AwareNow: Issue 59: 'The Renewal Edition' (US) by AwareNow™

AWARENOW

THE WORLD'S OFFICIAL MAGAZINE FOR CAUSES

DAVID LIM

THE RENEWAL EDITION

TURNING TRIALS INTO TRIUMPHS

‘STOLEN TO SACRED’

THE RENEWAL EDITION

ON THE COVER: DAVID LIM PHOTO

BY: JONATHAN DAVINO

AwareNow Magazine is a monthly publication produced by AwareNow Media™, a storytelling platform dedicated to creating and sustaining positive social change with content that inspires and informs, while raising awareness for causes one story at a time.

IN PRAISE OF CHILDISH THINGS

BURT KEMPNER

THE GENTLE RHYTHM OF THE NIGHT

PAUL ROGERS

STOLEN TO SACRED

DAVID LIM

FROM DIAGNOSIS TO DISCOVERY

ASHLEY PIKE, PH.D. 7

ADAM

HEARTCHARGED, ERIN MACAULEY

STROKE OF MADNESS

MICHAEL & MATT STICK, NSSC

MORE THAN MEETS THE CHAIR

EMILY LADAU, CHANGE FOR BALANCE

RENEWING THE LOVE OF LEARNING

DR. REBECCA WINTHROP, SONJA MONTIEL

LUCILE MOREHOUSE, TANITH HARDING

MUSIC & RESILIENCE

ALLISON CHENG, GABY MONTIEL

THE PAGES THAT HELD ME

JACKIE GATES

AUTISM ISN’T THE ENEMY

DR. TODD BROWN

HEATHER CHERVENY

MIKE BROWN

ALEX SEARLE

renewal: (n.) the act of restoring, reviving, or becoming new once

To renew is not simply to begin again—it is to begin differently. It is the quiet revolution that takes place in the soul after the storm has passed, when we sift through what’s broken to ﬁnd what still holds beauty, meaning, and truth. Renewal is born not in ease, but in aftermath. It is forged in ﬁre, shaped by loss, and powered by an unwillingness to stay down.

In this edition of AwareNow, we explore the alchemy of adversity—the way sorrow can shape strength, and how struggle, when embraced, can become the seed of something greater. Featuring the extraordinary David Lim, whose life is a living testament to the ascent from limitation to liberation, we turn our focus to the human capacity to rebuild, reimagine, and rise.

When the world feels heavy and uncertain, choosing to hold hope is not naïve—it is necessary. It is an act of quiet deﬁance. Positivity, in times of turmoil, becomes a tool of transformation. Not blind optimism, but a clear-eyed decision to seek the good, speak the truth, and move with heart.

This issue is not about forgetting what we’ve endured. It’s about honoring it—and using it. Because the hardest roads often lead to the most luminous destinations. And those brave enough to walk them carry something sacred: a story that might just light the way for someone else.

May this edition be a reminder: the hardest chapters can lead to the most powerful stories. And when written with intention, courage, and hope—those stories change the world.

ALLIÉ McGUIRE

CEO & Co-Founder of AwareNow Media

Allié McGuire began her career as a performance poet, transitioned into digital storytelling as a wine personality, and later produced the Hollywood Film Festival. Now, as co-founder of AwareNow Media, she uses her platform to elevate voices and champion causes, connecting audiences to stories that inspire change.

JACK McGUIRE

President & Co-Founder of AwareNow Media

Jack McGuire’s career spans the Navy, hospitality, and producing the Hollywood Film Festival. Now, he co-leads AwareNow Media with Allié, focusing on powerful storytelling for worthy causes. His commitment to service fuels AwareNow’s mission to connect and inspire audiences.

The views and opinions expressed in AwareNow are those of the authors and do not necessarily reflect the official Any content provided by our columnists or interviewees is of their opinion and not intended to malign any religion, ethnic group, political group, organization, company, or individual. Stories shared are not intended to vilify anyone or anything. Their intent is to make you think.

* Please note that you may find a spelling or punctuation error here or there, as our Editor-In-Chief has MS and lost vision in her right eye. That said, she still has perfect vision in her left and rocks it as best as she can.

It’s been lonely not being him.

BURT KEMPNER

WRITER & PRODUCER

IN PRAISE OF CHILDISH THINGS

“When I became a man, I put away childish things.” - 1 Corinthians

Why do so many of us abandon our playfulness as we grow older? Do the cares of the world grind us down? Is it the burden of responsibility and responsibility's frequent best friend: worry? Imagine taking the best aspects of our earlier years -- curiosity, daring, receptivity to the new -- and reintegrating them without the youthful baggage of impetuousness, self-centeredness and impatience. (Yes, sometimes my inner child could be an absolute brat.)

So how would this re-invigorated person act, think, feel, work, worship or, last but nowhere near least, play? I want to be that person. It’s been lonely not being him, I've been realizing how many good things from my youth I've let slip away and I'm trying to give them a loving welcome back. I may return to Never Never Land yet, even if I have to back in rather than ﬂy over. ∎

THINGS

Written and Narrated by Burt Kempner https://awarenow.us/podcast/in-praise-of-childish-things

BURT KEMPNER Writer & Producer www.awarenowmedia.com/burt-kempner

BURT KEMPNER is a writer-producer who has worked professionally in New York, Philadelphia, Washington, D.C., and Florida. His work has won numerous major awards, and has been seen by groups ranging in size from a national television audience in the United States to a half-dozen Maori chieftains in New Zealand. Spurred by his love for inspiring young people, he started writing children's books in 2015. Learn more about Burt and his books at his website: www.burtkempner.com.

Sometimes, beginning again is simply returning to the same place with more light, more love, and a little more of your true self.

PAUL S. ROGERS TRANSFORMATION

‘RELEASE

THE GENIE’ EXCLUSIVE COLUMN BY PAUL S. ROGERS

THE GENTLE RHYTHM OF GROWTH

FINDING GRACE IN

THE PACE

OF RENEWAL

Release

The Genie Fact: The Genie Knows

why

Tommy and

Gina are halfway there.

(Living on a Prayer - Bon Jovi)

Repetition is the heartbeat of life. An inaudible rhythm of eb and ﬂow. It is stable and how we measure our lives. If we are fortunate, we get to see a great number of these cycles during our lifetime. We practice things over and over; walking, speaking, loving, forgiving, until they become part of who we are. Even when we feel stuck, repetition is doing its quiet work beneath the surface.

Think of a small seed. It doesn’t bloom overnight. It takes water, sunlight, time and yes, repetition. A little nourishment each day. The same simple actions, again and again. And then one day, almost without notice, something shifts. A green shoot. A beginning. A small renewal, born from steady care.

We are often impatient and want to see big changes in the form of sweeping moments of clarity and breakthroughs. But more often, these moments come in the slow turning of repetition. In showing up, again and again, even when it’s hard. In choosing kindness, patience or hope, just one more time. Renewal isn’t always about starting over; it’s about coming alive like the small seed. In the same place, but with new eyes and perspectives.

Renewal is a shift in mindset, a healing of the heart, a return to joy. It’s not always dramatic. It can be subtle, quiet, almost imperceptible. Renewal is not erasing the past; it’s building something new on its foundation. Renewal often comes through repetition. A person might repeat a daily walk and suddenly realize they feel lighter, more present. A writer may show up to the same blank page every morning until one day, a new idea takes ﬂight. A relationship may go through the same conversations, the same struggles, until one day, there’s understanding. There is no speciﬁed time limit for renewal to happen.

In a very noisy world driven by the hunger of bigger and better, it takes the spaces between words, those silences, to appreciate the often underestimated power of small, repeated actions. It is the small things which actually are the big things. A quiet morning routine. A gratitude journal. A moment of mindfulness. A single kind word spoken every day. These aren’t grand gestures, but they accumulate and invite renewal.

Repetition gives us structure, and within that structure, we find space to grow. As a high school rugby coach, I use and run many drills to improve technique. This is done to build muscle memory, so when the time comes for action, the body already knows what to do and does not hesitate. In this case, repetition is deliberate and developmental. I constantly challenge our senior players to find some new nuances to the drill, which they can benefit from.

Similarly with our own lives. When we commit to a process or a practice, we often ﬁnd that we aren’t just repeating; we’re evolving and renewing.

One of the most uplifting truths is that you can come back to the same place and be a different person. You can walk the same path, have the same conversation, do the same thing but from a place of growth, wisdom, or healing. You can read a book or listen to a song many times and suddenly ﬁnd something new.

AwareNow Podcast

THE GENTLE RHYTHM OF GROWTH

Written and Narrated by Paul Rogers

https://awarenow.us/podcast/the-gentle-rhythm-of-growth

“Be encouraged that you don’t have to start over to begin again.”

That’s the magic of the overlap between renewal and repetition. It tells us that we don’t have to constantly reinvent ourselves or escape our lives to ﬁnd new meaning. Sometimes, what we need is already here. Sometimes, showing up again is the transformation.

Nature teaches us this truth. Trees lose their leaves each fall and grow them back in spring. Tides come in and go out. Birds migrate and return. And in these repeating patterns, there’s always renewal. Not one season is exactly the same. Not one sunrise is identical to the last.

We spend so much time resisting the flow of life. But if we just stop for a moment and allow ourselves to go with the flow, we will find new places we never even knew existed.

If your life feels repetitive, take heart. That repetition may be quietly preparing you for something new. And if you’re feeling the spark of renewal, nurture it with daily care, with small steps. Repetition isn’t the opposite of change; it’s the doorway to it. Renewal isn’t a complete restart, it’s a reawakening from within.

Be encouraged that you don’t have to start over to begin again. Sometimes, beginning again is simply returning to the same place with more light, more love, and a little more of your true self. ∎

PAUL S. ROGERS

Transformation Expert, Awareness Hellraiser & Public Speaker www.awarenowmedia.com/paul-rogers

PAUL S. ROGERS is a keynote public speaking coach, transformation expert, awareness hellraiser, life coach, Trauma TBI, CPTSD mentor, train crash and cancer survivor, public speaking coach, Podcast host “Release the Genie” & best-selling author. His journey has taken him from corporate leader to kitesurfer to teacher on a ﬁrst nations reserve to today. Paul’s goal is to inspire others to ﬁnd their true purpose and passion.

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I still feel like I’m in the beginning

DAVID LIM ACTOR AND DESIGNER

Photo Credit: Lucie Urban

EXCLUSIVE INTERVIEW WITH DAVID LIM

STOLEN TO SACRED FROM GRIEF TO

GRACE

Best known for his role as Ofﬁcer Victor Tan on CBS’s S.W.A.T., David Lim is no stranger to action and intensity. But behind the scenes, a deeply personal journey began when a home burglary left him and his wife, Marketa, without the sentimental pieces that once told their story. Instead of replacing what was lost, they chose to create something new—launching a handcrafted jewelry line, Maya David, born of grief, love, and a desire to make beauty out of pain.

ALLIÉ: Let’s get started at the beginning of what is a rather new chapter for you. You and Marketa turned something heartbreaking—a burglary that took more than just things—into something beautiful with Maya David. Can you take me back to that moment when it happened and what it was like to lose not just the jewelry, but the memories those pieces held?

DAVID: I think that was deﬁnitely the toughest part. Obviously, when you experience a burglary or a break-in, your

DAVID LIM ACTOR AND DESIGNER

Photo Credit: Lucie Urban

“This is going to tell my story… of resilience, of turning something heartbreaking into something beautiful.”

DAVID: (continued) that had so much sentimental value tied to them—family heirlooms, things we had gifted each other over the years for anniversaries, our wedding, things we had collected on our travels that reminded us of all the beautiful places we’d been.

So that was deﬁnitely the hardest part. It took us some time to process and grieve, but then it did shift. We just started asking ourselves, “Okay, what if we don’t replace these things—spend the money and just get new ones? What if we…”—and we started to get a little curious as well—“What if we don’t replace them? What if we teach ourselves how to make jewelry? What if we go down this path?”

That kind of curiosity, coupled with really wanting to turn this experience into something positive if we were able, led us to Maya David being born—hand-making our own jewelry. It was a way for us to heal. We enjoyed it, and we found meaning in it. That’s really how it all started.

ALLIÉ: Well, I think it's really beautiful because you took a situation where you were the victim and then became the victor. After that loss, to your point, instead of trying to replace what was stolen, you created something brand new. So, when did the shift happen from grief to creativity? Did you already know how to make jewelry? Or did this situation teach you something brand new?

DAVID: The latter—we had no idea how to make jewelry. We just knew that we loved it and had collected it over the years. Both my wife, Marketa, and I have always been creative. She’s been modeling and has lived all over the world practically her entire life. And me—being an actor—that’s another creative outlet, you know? Storytelling is artistic.

We had no clue—just as I had no clue when I became an actor, or before that, when I became a loan ofﬁcer and didn’t know anything about mortgages. I think it’s just creativity and curiosity and taking on new challenges.

It really just started with that thought—that curiosity—and me hopping down to the local arts and crafts store, the local bead store, bringing home some supplies and materials and saying, “Hey, I don’t want to just spend money and replace these things. I want to make them. I want them to carry meaning. I want them to be more personal and more beautiful because I created them myself. This is going to tell my story… of resilience, of turning something heartbreaking into something beautiful.”

That’s how it all started. But no, we didn’t know anything about it. Self-taught. Learn as you go. Similar to my acting journey—you learn as you go and use all your resources. There are so many resources today with the internet and books where you can teach yourself anything you want to learn. I’ve always been open to that sort of thing—learning new things. And when you ﬁnd something you’re passionate about and motivated by, you can really take it far.

ALLIÉ: I love that this is your theme. This is your through line, right? Like you said—when you started acting, you didn’t know. You just tried it. And you didn’t know anything about loans, but there you were—a loan ofﬁcer.

Photo Credit: Lucie Urban

DAVID LIM ACTOR AND DESIGNER

Photo Credit: Jonathan Davino

“It’s just about you and what you want to create… and how you want people to feel when they wear it.”

DAVID: Yeah. That’s the thing… We’ll see what’s next.

ALLIÉ: Well, I think it’s fantastic. Let’s talk more about this. Each piece in Maya David’s line is, as you said, handmade by you both, inspired by your travels and love for the natural world. Is there one piece, among the many, that holds the most meaning for you—something that tells a story that perhaps only the two of you know?

DAVID: That’s tough because, like I said, we want all of our pieces—everything we create that’s on our website—to carry some type of meaning or story. That’s why we made it. Either it reminded us of somewhere we’d visited, something that left a mark on us, a time in our lives, or just this journey of the burglary turning into a business.

But if I had to pick one, I’d probably say the very ﬁrst bracelets I made. They were probably not done perfectly, but they were just simple black onyx bracelets. I made a his and a hers—one for myself and one for Marketa. And to us, that symbolized new beginnings. It represented a fresh start, a way to heal from the traumatic experience. And if you know your stones, onyx symbolizes protection, courage, and strength. These are all things we try to really infuse into our pieces.

ALLIÉ: That is beautiful. Now, let’s talk about Victor. While most people know you as Victor Tan on S.W.A.T., this jewelry line reveals a different side of you, David. One that’s perhaps slower, more intentional, more personal. How do these two parts of your life—the action part and the artistic—inform one another?

DAVID: I think, surprisingly, they’re not that different. Because with acting and jewelry design at the core, you’re telling a story. One is for the screen, and one is through your design—something that’s a wearable piece of art.

Obviously, one is action-packed, fast-paced, just like you said. And then when we get in the jewelry studio, it slows down. It’s therapeutic. It’s just about you and what you want to create with these materials and how you want people to feel when they wear it.

So, not as different as you might think—even though, at surface value, they seem like two very different things.

ALLIÉ: Right, right. One and the same, kind of. So, the fact of the matter is that you’ve worn many hats—engineer, model, actor, now designer. Through all of these roles, what is the one thing you’ve carried with you, no matter where life has taken you?

DAVID: I think that curiosity I mentioned earlier, but also, I’ve always—ever since I can remember—dreamt very big. I’ve always believed that anything is possible.

When I think back on my journey—getting a degree in engineering, one of the most challenging degrees—I can’t tell you how much time I spent in the lab while my friends were out partying. Then going from that degree to becoming a

DAVID LIM ACTOR AND DESIGNER

Photo Credit: Jonathan Davino

Exclusive Interview with David Lim https://awarenow.us/podcast/stolen-to-sacred

DAVID: (continued) loan ofﬁcer, knowing nothing about mortgages, to deciding I wanted to become an actor—coming from a family with no artists or entertainers, being a shy kid—not knowing anything about getting into the entertainment industry. And now, to jewelry design.

But I always thought that if I worked hard and believed in myself, I could do it—or at least realize my potential in whatever outlet that was. Whether it was acting or jewelry design, something good would come of it. For me, it always came down to hard work, dedicating yourself, and making the necessary sacriﬁces to become successful at whatever you choose. That’s the common through line. So, when I give advice to other actors or friends, I say: you have to work hard, dedicate yourself to your craft—whatever that is—and believe in yourself.

ALLIÉ: I love that. And I love how, in all these different chapters of you, there’s that self-made, self-determined quality that carries through. So, I guess my ﬁnal question for you—back to all these chapters, the story of you—what is it that you want people to take away from the story of you, David? From all the different hats and roles—if you had a gift to give someone, what piece of advice or part of your story do you hope shines through?

DAVID: Wow, that’s a great question—deep. And I think I’m still very early on in my career. I just turned 41. I have a lot of career and a lot of story left to tell. I still feel like I’m in the beginning chapter. Once I get to the middle and toward the end, I could probably answer that a little better. But I just hope to inspire others to chase their own dreams and believe that things that maybe don’t seem possible actually can be done. That’s how I felt when I became an actor—I didn’t know if it was even possible. I didn’t really see anybody who looked like me having success in this industry. Maybe now, that young version of myself can have someone who looks like him and think—or she can think —that this might be possible. Whether it’s acting or anything else. You want to be an entrepreneur, an engineer, a loan ofﬁcer, a jewelry designer—whatever it is.

I heard something recently that really stuck with me: “You grow so that you can give.” And I’ve grown a lot—certainly over my eight-year journey on S.W.A.T., my 15 years in Los Angeles, and this shorter journey with Maya David. One day, I hope I can share the things I’ve learned—with my kids, with others, with people I don’t even know who may be watching or who are fans. ∎

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ASHLEY PIKE, PH.D. POSTDOCTORAL

Photo Courtesy: Ashley Pike

EXCLUSIVE INTERVIEW WITH ASHLEY PIKE, PH.D.

FROM DIAGNOSIS TO DISCOVERY

THE DUAL MS JOURNEY OF ASHLEY PIKE

When science meets lived experience, something extraordinary happens. Ashley Pike is both subject and scientist—living with multiple sclerosis while actively researching it. Diagnosed in 2008, her path has taken her from the exam room to the research lab, where her curiosity and compassion converge. As a postdoctoral fellow in the UAMS Helen L. Porter and James T. Dyke Brain Imaging Research Center, Ashley explores the brain’s white matter not only through the lens of data but through the heart of personal insight. In this interview, she shares her journey from veterinary technician to neuroscientist, opening up about the mental fatigue of graduate school, the beauty hidden in brain scans, and the need to redeﬁne what a “cure” for MS really means.

ALLIÉ: Let's just start at the beginning of you and your work with MS. Tell me about your relationship with MS.

ASHLEY: So, I live with MS. I was diagnosed in 2008—17 years ago now. I was working as a veterinary technician at the time. Even before my diagnosis, I was really into medicine. I’d spend time Googling, asking questions like, how can we stop pets from coming in for the same treatments over and over? How do we stop diabetes or kidney disease?

ASHLEY PIKE, PH.D.

POSTDOCTORAL FELLOW IN THE UAMS HELEN L. PORTER AND JAMES T. DYKE BRAIN IMAGING RESEARCH CENTER

Photo Courtesy: Ashley Pike

“My current research looks at how changes in the brain from MS affect cognition over time.”

ASHLEY: (continued) Eventually, I realized I wanted to get to the root of things—I call it being preemptive. That curiosity led me into research. My first research job was in cardiovascular science. I cared for 40 pigs, seven days a week. I loved them—they were like my little children. After that, I worked in breast cancer research. When I got into graduate school for biomedical research, I connected with a professor doing MS research. We had a great conversation, and I thought hard about it. In vet medicine, we didn’t do much neuro work. If something got too complicated, we referred out. I didn’t know much about the brain or spinal cord.

But I live with MS. I thought this could be cool. So, I got into MS research and haven’t looked back. It’s been fulfilling to come into research and take on a role in advocacy and activism, too. That’s where I am now.

ALLIÉ: I think it’s fascinating that you live with MS and you're working on it from both sides. I really appreciate that.

ASHLEY: Before I got into research, many of my coworkers didn’t even know what MS was. I was often shunted aside or treated like I was inferior. It was a tough time. I believed I’d end up in a wheelchair and that I didn’t deserve much because of how others perceived me.

When I started grad school, I had a conversation with my professor where I admitted I didn’t know if I wanted to pursue academia. I wasn’t a traditional student. I’d been working in a clinic for ten years. I wasn’t in my twenties anymore. Academia is a long road, and I didn’t know how MS might affect me—especially before I even knew what mental fatigue was. I limited myself. But during grad school, I met incredible people who supported me. The narrative shifted from "you’re nothing because you have this disease" to "I commend you for researching a disease you live with." That full 360 was powerful. It brought me to tears. Being seen as an inspiration is still surreal to me, especially considering the trauma I carried.

When I look at MS research, I’m not trying to cure myself. I’m not even trying to understand why I have MS. I focus on helping others living with MS who may not have access to information or may be going through what I did. Knowledge is power. If we can empower people with tools to improve their quality of life while living with MS, then I feel that’s my role.

ALLIÉ: Let’s talk about the visual representation of your research. It’s equal parts brilliant and beautiful. I know it’s the output of your work, but can you share the story behind that visualization?

ASHLEY: You’re seeing the pretty parts of science… Science is mostly boring and emotionless. But here at our teaching hospital, we have an "Art from the Heart" initiative, where you can take your research and express it through art—poetry, sculpture, any medium.

My current research looks at how changes in the brain from MS affect cognition over time. I’m studying how specific white matter tracts predict long-term cognitive behavior. There’s an open-source program we use that recently added a new feature I’d been hoping for. It allowed me to map out different white matter tracts that make up a brain’s connectome and show how the brain compensates for damage.

One of the participants in my cohort—who I’m now close friends with—also has MS and works where I do. She’s also active in advocacy, and we often travel together to D.C. to meet with legislators, which is where I met you. I was inspired to feature her in this visualization. I used her favorite color, purple, with some orange to represent MS awareness. Each strand represents an axon, and the colors show different tracts associated with the cingulum bundle.

I want to understand how MS-related changes in the brain—beyond what’s visible in clinical imaging—lead to cognitive impairments. There are no effective treatments for cognitive impairment in MS. And more than half of MS patients on disability are there because of cognitive issues, not physical ones. That’s a red flag. My goal is to develop more individualized clinical approaches. MS isn’t linear; symptoms vary dramatically. A high-functioning patient may still struggle significantly, but if their neurologist compares them to someone worse off, their issues may be dismissed. I want to change that. We use the term "cure cycle" to describe treatment approaches, even though MS has no cure at this time. The goal is to improve quality of life. If we can do that, we’re doing something right.

From left to right: Dr. Bass, Sisira Yadalla, Gwen Higgenbottom, Sarah Thomas, Nancy Archer, Dr. Archer, Ashley Pike, Ph.D & Guest

Photo Courtesy: Ashley Pike

ALLIÉ: I love this. As someone living with MS, I really feel the importance of what you’re doing. Let’s talk about that word —"compensatory." It’s fun to say, but it also holds a lot of meaning.

ASHLEY: Yes! Think of it like this: if you break your leg and need crutches, the crutches are compensatory. They’re not your legs, but they help you walk.

Or picture a road map. You’ve got three routes to work: the interstate, the highway, and the backroads. If the interstate is jammed and the backroads are flooded, you take the highway. If all three are blocked, you’re stuck. But if even one alternate route works, you can still get to work.

In MS, lesions block the brain’s "main roads." The brain reroutes signals through secondary pathways. These subservient tracks weren’t designed to take over, but they can fill in temporarily. That rerouting takes effort. So yes, it could explain mental fatigue. You’re using more of the brain to achieve the same function, and that requires more energy. More blood flow. More ATP. That’s something I’d love to study further.

ALLIÉ: That makes so much sense. Maybe that’s where fatigue kicks in—the brain is doing more work to compensate.

ASHLEY: Absolutely. Think of a new extension cord—tight, efficient wiring. Over time, if it gets bent or damaged, it has to use other wires. Less efficient. More energy is needed. That’s the brain on MS.

From left to right: Wendy Dann, Dawn, Allié McGuire, Ann Marie Johnson & Ashley Pike, Ph.D

Photo Courtesy: Ashley Pike

DIAGNOSIS TO DISCOVERY

Exclusive Interview with Ashley Pike, Ph. D. https://awarenow.us/podcast/from-diagnosis-to-discovery

ASHLEY: (continued) When I started grad school, I didn’t even know what mental fatigue was. Now I feel it deeply. I come home completely exhausted. And sure, my work in veterinary medicine was hard, but this—this is another level of mental strain. It’s constant problem-solving. There’s no ‘done’. It’s like an eternal book club my husband says. And yes, we know fatigue, depression, and mood can impact cognition. But I think the way the brain compensates could also be a contributing factor. It’s a question worth answering.

ALLIÉ: Definitely. You’re doing brilliant and beautiful work. For me, when I was first diagnosed, my neurologist, Dr. Robert Pace, helped shift my fear into fascination. Maybe it’s a coping mechanism, but being curious about MS helped me face it. Do you feel that way too?

ASHLEY: Honestly, my fascination started before my diagnosis. In vet tech school, I loved learning about white blood cells and the immune system. I geeked out over virology—like how the influenza virus changes to survive. That blew my mind. I think that fascination helped me separate emotion from science. In the clinic, I was compassionate, of course. But when a dog came in after being hit by a car, I focused on stabilizing vitals, not the trauma. That mindset helped me in research.

With MS, I don’t sit around thinking, "Wow, this is so cool." I see it every day. I focus on how we stop it. Friends often ask, "Are you working on the cure?" And I say, no. I used to feel bad about that, but I’ve made peace with it. There are brilliant people working on a cure. I focus on improving quality of life now. Because even if a cure comes tomorrow, it won’t give people back what they’ve lost.

Everyone’s path is different. For one person, a ‘cure’ might be returning to work. For another, it’s being seen and supported by their community. Reducing stress, feeling heard—these things matter. Less stress means less disease burden. It’s all connected.

ALLIÉ: Yes, interconnected—that’s the word. All these systems play off each other. I love that you’re redefining the concept of a cure. It’s not one-size-fits-all.

ASHLEY: Exactly. A global cure would be amazing—no one else getting diagnosed. But we still have millions living with MS now. And many are suffering. Healthcare has changed. Appointments are shorter. Patients with chronic illness need to be heard. Not just for emotional support, but to feel seen. People living with MS aren’t seeking attention—they’re seeking connection.

If one person can feel less alone because of what we share, that’s powerful. We’re not looking for sympathy. We’re looking for a path forward. Together. ∎

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Photo Courtesy: Gil Alter

PERSONAL STORY BY GIL ALTER

7 THING TO REMEMBER

ESPECIALLY ON THE HARD DAYS

1. Your presence gives others strength.

Someone feels stronger because they saw you out there - doing life your way.

2. You help people feel less alone.

You’ve been someone’s quiet comfort, even when you had no idea. in the way you listen. In the way your presence softens a room.

3. You inspire without trying.

Through your patience, your presence, your quiet power - you lift others. You’ve said things they still think about.

4. You prove it’s possible.

You think you’re just getting through the day. But to someone else, you’re proof that strength & dignity can look like this.

5. You shift perspectives.

Not because people feel lucky to walk when you can’t, but because seeing you move, live, smile, speak your mindmakes them question the limits they’ve placed on their own life.

6. Someone feels safer when you’re near.

7. You’re not a burden.

You are more special than you realize. There are others who think so much more of you than you think of yourself! People wish for your company more than you think they do. ∎

LAURA PAVLAKOVICH

FOUNDER OF YOU’RE JUST MY TYPE

Photo Courtesy: You’re Just My Type

EXCLUSIVE INTERVIEW WITH LAURA PAVLAKOVICH

JUST MY TYPE CHANGING THE TYPE 1 NARRATIVE

When it comes to living with Type 1 diabetes, Laura Pavlakovich knows the weight it carries—not just physically, but emotionally. A Southern California native diagnosed as a child, Laura spent years hiding her devices, her diagnosis, and parts of herself just to feel “normal.” But in the face of isolation, she created connection. As the founder of You’re Just My Type, Laura is redeﬁning what support looks like—leading with honesty, empathy, and a whole lot of heart.

ALLIÉ: Let's begin by your beginning. You grew up in Southern California, a beach girl diagnosed with type 1 diabetes as a kid. Can you take me back to that time? What do you remember most about the early days of navigating a diagnosis that I imagine would change your life?

LAURA: Yeah, it's so crazy, right? Because when you're ﬁve years old, you have no idea that what just happened to

Of course, I couldn’t grasp

LAURA PAVLAKOVICH FOUNDER OF YOU’RE JUST MY TYPE

Photo Courtesy: You’re Just My Type

“All of a sudden, I was that girl. Yeah, I was the ‘diabetic girl’. It was awful.”

LAURA: (continued) Everything I know has been told to me by my mom, but the symptoms of type 1 diabetes are all pretty textbook: frequent urination, rapid weight loss, and extreme thirst. My mom said we would walk to school together every day, and one day, she noticed that I could no longer walk up this small hill we always climbed—I was getting too weak. That was the ﬁrst thing that made her think, What is going on? This is so weird. Then I started wetting the bed, and she thought, This is also very strange. She knew something was wrong. She had no idea what it was, but she knew I was getting sick and got really scared.

She took me to my pediatrician—this was back in 1996, when things were so different. Thank God she took me when she did. The pediatrician said she would do a fasting blood test and told my mom to take me home, not give me any food or water for 12 hours, and bring me back the next day.

Most people don’t know this, but before you’re diagnosed with type 1, your blood sugar is extremely high because your body isn’t producing any insulin. That’s why you're so thirsty all the time. My mom told me I was screaming bloody murder because I needed something to drink, and I was starving. But the doctor had told her she couldn’t give me anything.

So she brought me back the next day. They did the blood test, and my pediatrician came out and said, “Your daughter has type 1 diabetes. Drive straight to Children’s Hospital. There’s a team of specialists waiting for you.”

Now, of course, we all know you can take a blood sugar reading with a meter in ﬁve seconds. Literally—ﬁve seconds. So, all of that felt very unnecessary. I feel worse for my mom, having to go through that. But I have this really distinct memory of being in the hospital, playing with a Hello Kitty toy, and looking up while my mom was on the phone with my dad, hysterical, telling him I had this diagnosis. I remember thinking, “Something really bad is happening.”

I was in kindergarten at the time, and everything changed. I went to a really small private school. We didn’t have a school nurse, but my mom would come to school every day at lunchtime to test my blood sugar and give me a shot. Suddenly, I had to bring a lunchbox packed with Post-it notes on every single food item listing how many carbohydrates each one had. I got to have snacks throughout the day that other kids didn’t get to have. And I knew I was different.

Of course, I couldn’t grasp the full scope of the disease, but I became ‘the different one’. I was the only kid with it. So, all of a sudden, I was that girl. Yeah, I was the ‘diabetic girl’. It was awful.

ALLIÉ: So every day, she would come and give you a shot at school. Every day from your diagnosis on, you've had to calculate everything that goes into your body. That's a lot of math to do constantly.

LAURA: And I hate math. But we lived really close by. And again, we were so fortunate because she had a job that allowed her to do this. Otherwise, I don't know what we would have done without having a nurse there.

I maybe would have had to switch schools, but she said she knew I learned pretty quickly what I needed to do. One day, my mom called the school and she's like, “I'm gonna be right around the corner, but just let's try something. When Laura comes in today for me to test her blood sugar, just tell her that I can't make it and see what she does.” And she said, “If you need me, I'll be right here. I just really wanna see.” And so I came in and they said, “Your mom can't make it.” And I was like, “Okay.” And I took the thing, tested my own blood sugar, got a shot and from probably around the same year I was diagnosed or the following, I kind of just took over with the physical stuff.

LAURA PAVLAKOVICH

FOUNDER OF YOU’RE JUST MY TYPE

Photo Courtesy: You’re Just My Type

“I don’t have the energy to explain it to all of these new faces.”

ALLIÉ: I just can't… back to that part of the story you shared about that terrible 12-hour fasting test, I cannot imagine my child screaming because they’re thirsty. And to think that things have changed for the better, but not probably enough.

LAURA: A lot of parents think their kids don’t have type 1 diabetes but rather symptoms that sound a lot like ﬂu symptoms. So, parents give their kids liquids like 7-Up or drinks with electrolytes like Gatorade, but these things that are raising their blood sugar so high and causing them to be in way worse shape by the time of diagnosis. It’s never easy for the parents.

ALLIÉ: Let's fast forward to a moment here. Because you've shared that in high school, someone actually ripped off your insulin pump, not knowing what it was?! I can only imagine that moment. I mean, some scars are visible, but this must be an invisible scar for you. Can you walk me through that experience? Bring me back to that moment.

LAURA: It's so interesting because that memory was blocked in my head for a long time, and it actually took a lot of therapy for me to remember that happening.

So, I was put on an insulin pump when I was really young, kindergarten or ﬁrst grade. That was like my life. I had my insulin pump on me at all times. Then when I went to high school, I switched from a really tiny private school where everyone knew me to a huge public high school with 2,200 kids. I think only four of us at that entire high school had diabetes. Back then, insulin pumps looked like pagers. This was still in the early 2000s. They had a long tube connected to a reservoir of insulin into an infusion set in your body. There you have a little cannula inside your body. Well, someone just came up thinking it was a pager and they're like what's that and they took the pump off my pocket and the site ripped out of me.

Again, I blocked it out of my memory because it was so traumatizing. When that happened, I honestly don't remember the exact moment, but I went home and I told my mom, “I'm getting off the pump right now.” I was 14-years-old, and I said, “I don't want this anymore. I don't want people to see it on me. I don't want them to ask me questions…” I'm getting emotional just talking about it. I was like, “I just don't want to be that girl. I've been that girl this whole time. I ﬁnally got to a good place at that school. I don't have the energy to explain it to all of these new faces.” And that just put this little sense of I guess we can say shame. I would hang out with new friends and unhook my insulin pump before we'd hang out, which is a very dangerous and terrible thing to do because that's what's giving you insulin throughout the day. I remember I would unhook it and then be like, “Okay, I'm normal right now.” I got to hang out with my friends, and I'd have nothing visible on me for them to know. Of course, I'd get really sick because my blood sugar would be so high without insulin.

ALLIÉ: But being sick was worth it to you at that age, just so you could ﬁt in. Yeah?

LAURA: A hundred percent.

ALLIÉ: Those are big things to deal with. So, you talk about the emotional toll of diabetes sometimes being even harder than the physical part. Can you just talk me through that?

LAURA: When people think of diabetes, ﬁrst of all, there's a lot of misinformation. There's a lot of stigma. There's type 1, there's type 2, and there's a million types in between that also people don't know about. And when people think of it, in my opinion, it's like, “Numbers, oh, you have to count your carbs. It's a lot of food counting, and it's shots.” And I wish that's all it was.

LAURA PAVLAKOVICH FOUNDER OF YOU’RE JUST MY TYPE

Photo Courtesy: You’re Just My Type

“Diabetes is one of the most expensive diseases to live with. Insulin is the eighth most expensive liquid in the world.”

LAURA: (continued) I have this new metaphor of how to describe what it's like having type one diabetes. And I'm sure this is similar for a lot of people with chronic illnesses. But when I was trying to process, I would get in these really depressive spirals when I would think about having diabetes for the rest of my life. And the way I could ﬁnally put it into words is that it felt like I was dropped into the deep end of an ocean. And the only way to survive is by treading water through your hands and legs the whole time, but there's no shore. So you're not swimming to somewhere you can ever rest. You're just treading so you don't die. And if you stop, you drown… You can't stop. And people can swim by you and think you're ﬁne because they think you're swimming (not treading). “Look at her! She’s having this great time.” But you can't rest, and you can't really explain. It's hard to understand unless you've lived it. It's so invisible. And people only think it's easy because us as a type one community, we make it look so easy as we walk around unintentionally hiding the actual burden.

So yes, I have to count every single carbohydrate that goes into my body. I have to test my blood sugar throughout the day. I have to take an insulin injection every single time I eat. Every time my blood sugar goes low, I have to eat sugar. If I exercise, I have to plan for that, too. It’s like a video game where the stakes are your life—too much insulin can kill you, not enough can kill you. And I’m the one who has to make that call. We’re not doctors. Kids aren’t doctors. It’s a wild disease.

And I don’t think people really understand the scope of it. It’s hard to ask for help. And it’s nearly impossible not to feel like a burden. I think every single type 1 I’ve met shares that same feeling. You’re on a hike with friends and suddenly have to say, “We need to stop right now—my blood sugar’s low.” Or you’re at work, in a meeting, and you’re seeing double because of your blood sugar. I went to a comedy show the other night where they made everyone lock up their phones, and I had to have a whole conversation with the staff explaining that I can’t be separated from mine—it tells me my blood sugar in real time.

On top of all that, we have to be our own advocates with insurance companies. Diabetes is one of the most expensive diseases to live with. Insulin is the eighth most expensive liquid in the world. So we’re already ﬁghting mentally, emotionally, physically—and then we have to ﬁght the doctors, the insurers, and big pharma just to afford the medication that keeps us alive. It’s a layered mental prison.

Over time, I think I got really good at dissociating. I’d tell myself: just don’t think about it. You can’t think about it. It’s day by day—get through today, then tomorrow. But my weak point is this thought I keep coming back to: I’ve already had this for 30 years… and there’s no end in sight.

You go to get a massage to relax, and you’re wondering if your phone’s going to beep during it—do you turn it off and risk not waking up if you go low? Massages can make your blood sugar drop. You go on vacation and it’s all new food —new carb counts you don’t know, possibly a new language, time zone shifts. You have to change settings.

It’s a disease you cannot escape. You don’t get a break. It’s relentless. And no one knows, because we’re walking around with these little devices on us—and to everyone else, we look fine. But it’s hard to understand what it really takes.

ALLIÉ: I hear you 100%. It’s different for me—because I don’t have diabetes—but I do have multiple sclerosis. And to your point, I loved the metaphor you used. People see you in the middle of the ocean swimming and think, “Oh, she’s having a great time.” But they don’t know you’re just trying to survive.

ALLIÉ: (continued) So, Laura—when was the moment that shifted things for you? When did you realize that the mental health side of this needs to be part of the conversation, and that you wanted to do something about it?

LAURA: After high school, I went to this photojournalism program that focused on injustice and poverty. It was volunteer work in developing countries, and I was really young—just 17. It was life-changing. I came home to Redondo Beach with this moral obligation to change the world. But I felt lost. I wanted to photograph something meaningful. People were like, “Take photos of the ocean or dolphins,” and I remember thinking, this isn't it. But nothing about diabetes crossed my mind at that point.

Then in 2016, I was at a wedding talking to the photographer, a mom who barely knew me. She started telling me about her four-year-old son who was just diagnosed with type 1. She said he cried himself to sleep at night because he felt like he was the only person in the world with it. She told me, “I can only show him computer statistics so many times before it stops meaning anything.”

And I swear, in that moment, it clicked: this is it. I’m going to take photos of people with type 1 and share their stories. I wanted to give that little boy a book of faces instead of stats. Real people, not just numbers. That’s how You’re Just My Type began.

It started small. I was nannying and working in restaurants, but I started calling up my friends from diabetes camp and asking if I could take their photos. My mom had created a support group called the South Bay Hot Shots, so I had connections to people with type 1. I always had these little glimpses of belonging, but they were fleeting. You’d see your camp friends for a week, then not again for another year.

We started interviewing people. We asked the same set of questions: “What mental health advice would you give?” “What’s something you thought you couldn’t do with type 1, but you proved yourself wrong?” It built this beautiful, healing community. Then COVID hit, and I couldn’t photograph people in person anymore, so I put out a Google Form: Send in your photo and your story from wherever you are. And we blew up. People from Finland, Bangladesh, India, China— stories from all over the world. Tens of thousands of followers.

“That’s what this community is… It’s a place to breathe.”

LAURA: (continued) In 2021, my nanny job ended and I was completely burnt out. Drowning, honestly. But I had this wild idea: what if we did an in-person event? Everyone said, “Laura, what are you thinking? It’s COVID, everything is canceled.” But I just knew. People needed this now more than ever. So we hosted our first event for young girls with type 1—ages 8 to 17. Every volunteer was a woman with type 1. We had a behavioral therapist, a social worker, a yoga instructor, a nutritionist, an artist… all with type 1. It was like a mini mental health summit.

It was beautiful. Afterward, I thought maybe this would just be for young girls. But the community said, “No, no. We all need this.” Adults, boys, older generations—everyone. So we kept going. Now, we call these gatherings “life rafts.” When you find someone who gets it—even just one person—it changes everything. You don’t have to attend a big event. You don’t need 40 other people in the room. One person who truly understands is enough to help you catch your breath.

That’s what this community is… It’s a place to breathe. A place to rest your limbs after all that treading water. And then start again, with just a little more strength than you had before.

ALLIÉ: And I love how you said a moment ago—how the project started with photos so people could actually see it. This is what it looks like. This is what I look like. For that little boy, it wasn’t about numbers. It was about seeing faces.

LAURA: Exactly. Not just statistics—we're real. And we're everywhere.

ALLIÉ: So, I guess my last question is this: you've created such an incredible space where people now truly feel seen and understood. Is there a single moment—or maybe a story—that makes you sit back and think, this is why I do this?

LAURA: My number one was during one of our toddler-specific events.

Exclusive Interview with Laura Pavlakovich https://awarenow.us/podcast/just-my-type

LAURA: (continued) We started hosting events for type 1 toddlers, but really, they were for the parents. These parents are suffering. They need to be around other parents who are going through the same thing to feel the same kind of relief we get. The kids? They’re just two, three, four years old—they don’t fully understand what’s going on yet. We’d rent out a little gym or play space so the kids could just run around. We’ve been doing them for a few years now, and I think it was in the second year that this moment happened. Two little girls were on the same monkey bars, and I noticed they had their devices in the same spots. I thought it was just too cute, so I started filming them. One of the girls is swinging, and mid-swing, she looks over and sees the other girl’s insulin pump. She just stops. She drops down, runs over to me and says, “That girl has diabetes—just like me.” She was emotional. I looked at her and said, “They all have diabetes. Just like you.” And in that moment, I realized: this is for them now. These kids are going to grow up in a world where they’ve never been the only one. They’ve never been “the different kid.” They’ve had 15 or 20 other kids who go to events with them every few months. They'll grow up never feeling alone. I can’t believe I got that moment on camera. It chokes me up every single time.

Another moment that stands out: we have adults who come to our events completely alone. They’ve never met another person with type 1 in real life. They show up bravely, all by themselves, not knowing anyone. At one of our events in downtown L.A., I saw this guy walk in—I’d never met him before. He walked into the room, looked around at everyone… and he saw. He saw the pumps, the CGMs, the sites. It’s L.A., so a lot of people are in tank tops and t-shirts. You can see everything. I walked up quietly, introduced myself, and he looked at me and said, “Everyone here has type 1?” I nodded. “Everyone here has type 1.” And I watched him exhale for the first time. Because until you experience that kind of community, it’s like you’ve been speaking a language no one else understands. Then, suddenly, you’re in a room where everyone speaks it. They get you. No explanation needed. And the relief that comes with that—it’s massive.

ALLIÉ: Yes. What you’re saying—it's just as true for adults as it is for kids. We all have this deep need to be seen and understood. I’ve had conversations like this within the MS community. When I’m with others who have it, I don’t have to explain anything. And that’s such a gift—because explaining is exhausting. To just be… in a space with people who get it… that’s everything. Community really is everything. Your people—your people—are everything.

LAURA: Exactly. Community is everything. We all just want to belong. Every human being is searching for that— somewhere we belong. That’s something we take really seriously at You’re Just My Type. Because even within the type 1 community, it can still feel hard to find your place. Some groups feel exclusive. You might not see yourself represented. So for us, it’s simple: your diagnosis is your ticket in. It doesn’t matter your age, your race, your gender, your sexuality— none of that matters. If you have type 1, you belong here. No questions asked. No explanations needed. That’s what we want to give people. A place where they don’t just feel seen—they are seen. Always. ∎

TAP/SCAN TO LISTEN

ADAM POWELL

MS WARRIOR & ADVOCATE

EXCLUSIVE INTERVIEW WITH ADAM POWELL

DEFYING ALL ODDS STRENGTH, STAMINA, AND LIVING LOUDLY WITH MS

Living with MS means carrying a weight most people can’t see—and ﬁnding the strength to move forward anyway. For Adam Powell, that strength isn’t just in surviving; it’s in creating a life that speaks louder than the diagnosis. As someone who shares this journey, I sat down with Adam for an honest conversation about what it means to live fully when every day brings new challenges. Together, we talk about adversity, advocacy, and the choice to stand tall when it would be easier to fall. As my sister says, “I’m not dying with MS. I’m living with it.” And Adam is living proof of what that can look like.

ALLIÉ: Because it’s a good place to start, let’s go back to the beginning of your life with MS. Please share the story of your diagnosis day.

ADAM: All right, so I officially got diagnosed on June 17, 2019. But the very first symptoms I had weren’t like most people who say, “I’ve had MS for 15, 20 years.” That wasn’t the case for me. My first symptoms showed up around October of 2018. I was working for UPS in Columbus, helping open a new building. I had just bought new boots, and

When I got diagnosed, I could still walk… but within ﬁve months I was in a wheelchair.

ADAM POWELL MS WARRIOR & ADVOCATE

“My ﬁrst MRI showed over 30 lesions in my brain and more than a dozen on my spine and neck.”

ADAM: (continued) Then came Christmas, which at UPS is absolutely insane, as I’m sure you know. I’d come home from work and feel like my legs were cold, numb, and just... off. But again, I told myself, “Of course they do. I’ve been outside in the cold for 12 hours.” So, I wrote that off too.

Then Christmas Eve comes along. I’m at my sister’s place, and suddenly I get this awful groin and lower back pain. I could barely walk for three days. I remember she gave me a TV, and it sat in my car for three days because I couldn’t carry it up the stairs to my apartment. That’s when I thought, “Something is wrong.”

I actually went to the doctor, which is rare for me—I’m not a big doctor guy. The doctor thought it was a hernia and referred me to a specialist. So I went. The specialist said it wasn’t a regular hernia, but a “sports hernia,” which to this day I still don’t fully understand. He sent me to physical therapy. The therapy helped—my groin and back pain got better. The therapist thought it might be a pinched nerve from all the physical labor I’d done over the years. That kind of made sense... except usually that kind of nerve pain only affects one leg. Mine was in both.

At work, I started noticing I needed to touch things more to keep my balance. My legs felt heavy. At therapy, I kept asking, “Why can’t I balance on this board anymore?” I could always do that. By April, the therapist said, “I think you should see a neurologist.” And I was like, “Why?” I didn’t know anything about MS. I didn’t know anyone with MS. She said she thought I might have it, and I was like, “Oh. Okay… What’s that?”

So I saw a neurologist. Within two months, I had a diagnosis: primary progressive MS. Just like that. It was fast. I was taken off work immediately. I had been with UPS for 12 years, and just like that—I was done.

ALLIÉ: That’s wild. I mean, me myself living with relapsing remitting MS, it started small. But for you, it was just all in —right away.

ADAM: It was a very hard pill to swallow, especially because I didn’t know anything about MS. I had to Google it just to figure out what it even was. But reading the definition online doesn’t really explain it—it’s different for all of us. My first MRI showed over 30 lesions in my brain and more than a dozen on my spine and neck.

ALLIÉ: Oh my gosh.

ADAM: Yeah. What I’ve since learned is that those lesions take months to form—so clearly I’d had MS for a while, but it had been dormant. Then in October, I lost my best friend—basically my brother. That stress just unlocked something. After that, it all went downhill.

ALLIÉ: And the fact that you had noticed things… but just kept writing them off…

ADAM: Exactly. That was October. By December, I was ﬁnally going to the doctor. So it wasn’t a long timeline. When I got diagnosed, I could still walk, just not for long distances. But within ﬁve months I was in a wheelchair. That quickly.

ADAM POWELL

MS WARRIOR & ADVOCATE

“I mean, I lost everything. My career, my ability to play sports, my independence. I couldn’t walk.”

ADAM: (continued) I’d never missed work before. That just wasn’t me. So I didn’t understand how disability worked. I was trying to ﬁgure out what to do with my time, but also—do I still have my beneﬁts? How am I going to get paid?

So in November, I tried logging into the UPS beneﬁts portal, and it wouldn’t let me in. I was using the same password. I didn’t get it. So I called and they said, “Oh yeah, you can’t access it because you don’t have insurance. You haven’t had insurance since October 11.”

So over a month before, I had lost my insurance—and I didn’t even know it.

ALLIÉ: What must have been going through your mind? Here you are, losing your ability to walk...

ADAM: Well, I hadn’t lost it yet. But that’s what made me lose it. I didn’t know what stress could do. I didn’t know anything about MS. I didn’t realize how bad stress could be. But I spent hours every day on the phone trying to ﬁx it. It took about a month. Between my employer, the insurance company, and my doctors, it was a mess.

It turned out my ﬁrst neurologist—who was terrible—had taken me off work, but he kept telling the insurance company I was ﬁne. So from their side, they were like, “Why isn’t he working then?” Meanwhile, I’m being told I can’t work. It was a mess. I lost my insurance, couldn’t get Ocrevus—which at the time was the only approved drug for primary progressive MS—and couldn’t get my next MRIs. Eventually, I switched doctors, but the old guy kept coming back to haunt me. By the time it all got sorted, I had gone from using a cane to needing a wheelchair. It all happened so fast.

ALLIÉ: You moved through those stages so quickly.

ADAM: Yeah.

ALLIÉ: You’ve said that MS has changed everything—but also, somehow, nothing. I love that. I want to hear more. What have you lost with MS—and what have you found?

ADAM: I mean, I lost everything. My career, my ability to play sports, my independence. I couldn’t walk. I was 37—in the prime of my life. I loved working, going to concerts, partying, playing sports… and suddenly it was all gone. Just disappeared. I had to cope with that. But over time, MS opened my eyes. It changed how I see the world. It forced me to slow down and really see things. I stopped taking life for granted.

Once I was ﬁnally able to drive again, I went on a cross-country road trip. I visited seven national parks. I met up with other people living with MS along the way. That’s something I never would have done when I was still working. I would’ve taken a week off, maybe gotten some tattoos, gone to a few concerts, then gone right back to work. But MS slowed me down—and gave me a new perspective.

ALLIÉ: The curse... and the blessing at the same time.

“I’d rather deal with pain and walk, than be pain-free and unable to move.”

ADAM: Exactly. But it was a tough road. After the insurance debacle, I ﬁnally got back into physical therapy. I had stopped driving because I didn’t trust my feet. Driving was my job—I knew I couldn’t do it anymore. So I tried getting hand controls put in my car. Things were going okay for a while…

Then March 2020 hit. COVID shut the world down. I couldn’t leave my house for four months. I couldn’t walk, couldn’t drive—and honestly, I was terriﬁed. I had this new disease. I was on an immunosuppressant drug. I didn’t know what would happen if I got COVID. So I stayed home.

Those four months were the darkest, most depressing time of my life. I was grieving what my life used to be, questioning if it could ever be anything again. And it’s messed up to say, but during that time, I had to consciously kill my old self—grieve the version of me that was gone—and start over. That’s what I did.

When things opened up again, I hit PT hard. I told myself, “I’m not the guy in the wheelchair. I will do everything I can to get out of it and stand on my own two feet again.” And I did. I still do. Every day.

ALLIÉ: That’s the constant reminder we give ourselves. It’s the MS warrior mantra. But there’s this part of your story that really struck me... you talked about pain—not just life being painful, but that pain for you is constant, and if it wasn’t there, you wouldn’t be able to walk. That blew my mind.

ADAM: Yeah, and it blows most people’s minds when I explain it. You know how doctors ask, “What’s your pain level, one to ten?” I’ve always hated that question. But now? My pain is never below a seven. It might go up, but it never goes down. It’s 24/7. Mostly in my lower legs—ankles, feet—and lessens a bit moving up to my knees and hips. I also have what they call the MS hug. I feel like I’m constantly wearing a corset, just being squeezed.

But I need that pain. My brain doesn’t know where my legs are anymore. Without that pain, I have no feedback. I’ve learned how to recognize the pain patterns—like if I bend my legs a certain way, I feel a certain kind of pain, and that tells me where my legs are in space. If I take painkillers, or even smoke weed to dull the pain, I lose that feedback— and then I can’t walk.

One of my friend's kids, she's 11 years old. They were talking about it and how crazy it is that my brain doesn't know where my legs are. And her theory was that my legs and my brain were in a relationship. Then they broke up and my legs ghosted my brain. And I was like, that is actually brilliant.

ALLIÉ: So the pain is like a messed-up compass for your body.

ADAM: Exactly. A terrible compass—but a necessary one. That’s how we adapt with MS. It’s not a normal way to live, but it’s still living. I’d rather deal with pain and walk, than be pain-free and unable to move.

ALLIÉ: My sister always says, “I’m not dying with MS. I’m living with it.” So Adam, what does living with MS mean to you—not just surviving, but really living?

ADAM: It means doing as much as I can while I can. With the aggressiveness of my MS, I know it’ll get worse. I’ll deal with that when the time comes. But right now? Every day, I just try to be a little better than the day before.

DEFYING ALL ODDS

Exclusive Interview with Adam Powell https://awarenow.us/podcast/defying-all-odds

ADAM: (continued) It’s turned me into an advocate, a fundraiser, a public speaker. All things I never imagined doing. I just spoke at Baker College, and I’ve been invited to speak at an MS conference in Missouri. I’ll be on a panel talking about how I got out of the wheelchair.

Really, it’s just stubbornness. That’s what got me through. And I want to be that person for someone else—so they don’t have to go through it alone like I did. I run a monthly support group for people newly diagnosed—three years or less. It’s a safe space to ask questions, vent, just be heard. I didn’t have that when I was ﬁrst diagnosed. I would’ve loved it. So now I create it for others.

ALLIÉ: Absolutely. Let’s talk about that. You do so much advocacy and create space for others to feel seen and supported. But when the crowd clears and it’s just you—what helps you feel supported and seen?

ADAM: Honestly, my parents. They’re incredible. When I couldn’t walk or drive, they did everything for me. They never complained, but I felt guilty. That guilt pushed me to get back on my feet—literally. My sister’s amazing too. And a lot of the people I’ve met online—on Facebook, TikTok, Instagram—they’ve become more like family than some of my old friends. I lost a lot of friends after my diagnosis. I get it—it’s a tough thing for people to process. It makes them question their own mortality.

But I found my tribe. And that keeps me going. I do a lot of Zoom calls, and I’ve met many of these folks in real life now during my travels. It’s a beautiful thing to meet someone in person after only knowing them as a little square on a screen.

ALLIÉ: It’s that connection. Especially with invisible illnesses, the isolation can be crushing. But when you ﬁnd your people… Adam, you’ve been handed something most people wouldn’t know how to carry. For a while, you didn’t. But you ﬁgured it out. Today, you not only carry this diagnosis—you carry others too. You support them. You give them hope. So, my last question is: What gives you the strength to carry on—not just for yourself, but for others?

ADAM: That’s tough. I think, honestly, it’s just stubbornness again. I’ve never let anyone tell me what to do—and I wasn’t about to let MS tell me either. I still ﬁght with it every day. I’m in pain all the time. Walking still sucks. But I don’t focus on that anymore. I focus on what’s next—my next talk, my next event, my next walk. I always give myself something to look forward to. Looking back doesn’t do anything for me now. So I keep looking forward. That’s what keeps me going. ∎

TAP/SCAN TO LISTEN

It’s not because I deny my realities but because I embrace them.

BETHANY KEIME CO-FOUNDER OF HEARTCHARGED

Photo Courtesy: HeartCharged

EXCLUSIVE INTERVIEW WITH HANNAH & BETHANY KEIME BY ERIN MACAULEY

FULL OF HEART THE SISTERS CHANGING THE PULSE OF HEART ADVOCACY

Hannah and Bethany Keime are a force to be reckoned with. I like to refer to them as the Bionic Sisters as they both have ICD’s, or defibrillators, fitted. Hannah was 16 and Bethany was 21 when they had them implanted for the deadly heart condition they were both diagnosed with (HCM or hypertrophic cardiomyopathy). Rather than sit and wallow, these girls are taking the world by storm, setting up a not for profit called HeartCharged, being massive advocates and changing the face of advocacy work. In this conversation I sit down with these incredible sisters to discuss their diagnosis, advocacy work they have done and what’s next.

ERIN: Hannah and Bethany thank you both so much for allowing me to interview you both, two of the most inspiring women I know! You were named as The Fresh New Faces of HCM Patient Leadership. How important is it to you to receive recognition like this as it shows what you’re doing is working?

HANNAH: Thank you for asking. Now that it’s happened, I think being the “Fresh Faces of HCM Patient Leadership” has been the goal all along with our work through our non-proﬁt organization, HeartCharged.

We were diagnosed with HCM, or hypertrophic cardiomyopathy, a deadly chronic heart condition, when we were teenagers. And that was somewhat by chance because no one even realized we had symptoms. So when we got that surprise diagnosis, we of course started googling HCM and all we could ﬁnd for people our age were children who had died. Honestly, just a little over a decade ago, most people with cardiomyopathies didn’t make it to adulthood. There was little information for us as young people. We came across maybe one Facebook group which was for much older people that we certainly couldn’t relate to and was a little depressing for us as teens. Then there were people who wanted to charge you a lot of money to get vital information and that didn’t sit right either. I guess right then we knew what we didn’t want to be and what didn’t help us.

BETHANY: After a few years of advocating in our city and state for better outcomes for young heart patients, I felt deeply impressed to go onto social media, specifically Instagram where young people go, with who we were. We had each other but that was the extent of our community. I knew there must be others out there. I said I’m going to take some pictures where people can see the defibrillator I had to get implanted bulging out. And pictures of the meds I had to take. And pictures showing my gratitude and life. And almost instantaneously the thousands who now make up our HeartCharged community started finding us. It started with another young girl afraid of what having an implanted defibrillator would do to her body. Seeing mine and talking with me, she accepted that life-saving treatment basically because of a hashtag that led her to us. Then came a young man in Scotland that never met anyone else with our shared condition. In fresh ways, we were connecting with the new generation of heart warriors. Helping people is our reward and we love getting feedback knowing we are doing just that.

HANNAH: True, but also it’s nice to come into your own and be acknowledged, especially since it helps expand the impact. Some people deﬁnitely just dismissed us at ﬁrst as two young girls doing very different types of posts. Other heart warriors, especially younger ones or their moms in particularly, were thrilled with our fresh approach.

We are being our authentic selves—young women who advocate and create.

HANNAH KEIME CO-FOUNDER OF HEARTCHARGED

Photo Courtesy: HeartCharged

“It’s as if we heard the words hypertrophic cardiomyopathy followed by a million doors closing around us and we were left searching for the doors still open to us.”

HANNAH: (continued) There were certainly some people who thought you had to stay in the box to reach people but that obviously wasn’t true. We deﬁnitely didn’t feel welcomed among people who should have been advocating besides us. Maybe we were being too real or having too much fun doing it. But since day one, we have been reaching people who had felt alienated and the general public by the millions, which isn’t easy when you are talking about a semi-depressing topic people would generally prefer to ignore.

Now, though, we have a seat at the table, a hard-earned and I’d say well-deserved seat. Our impact is vast and people embrace it. Then this last year, we received a huge recognition. We were short-listed by renowned judges and then selected by our peers from 150 global heart organizations to receive the Global Heart Hub Excellence Award. Wow. I was in Dublin for the annual meeting and when they called HeartCharged it was overwhelming and I could deﬁnitely feel it in my heart. We had already captured the attention of the public and now we felt the respect of others for what we were doing and acceptance of how we were doing it in a fresh way.

ERIN: Can you talk a little about your diagnosis and what it meant for you being diagnosed at such a young age?

HANNAH: Great question. It’s interesting the impact of a diagnosis in relation to what stage in life you’re at and how it comes about. As to the stage in life, if you’re a baby, the burden is on the parents and you know no other life. As an adult, you may have already realized your own mortality. But we were teenagers. I just started my freshman year of high school. Bethany was in her senior year. Our life before our diagnosis never hinted at a disabling condition. We were at a time in life where they tell you the future is yours and you are supposed to step out and grab hold. And then our condition took hold of our future, in a number of ways.

BETHANY: And I think there is a lot to be said about what precipitates the diagnosis. For some people, there is a large event, like a cardiac arrest or a car accident. And you are forced to acknowledge a trauma. But here we are, young girls, and we thought we were healthy and we didn’t have an event. Just our aunt got a diagnosis and said we should be checked. We get checked and suddenly our whole paradigm had to shift.

HANNAH: I had symptoms which I had told to my pediatrician but he kept telling me I was ﬁne. I fainted a few times and had abnormal heartbeats and chest pains. Then I go to a cardiologist, just to check, and she says she doesn’t know how I hadn’t dropped dead yet. I was playing varsity basketball and doing competitive dance. She told me I wasn’t going to do that any more.

BETHANY: There I was in my senior year of high school and I’ve just started a prestigious pre-professional ballet program. I had been training 5 to 6 days a week since Kindergarten. I was making my lifelong dream come true. And I was told I could ‘continue for now’ and then ‘dance at 60%’, as if that would keep me working. We seriously went from having a world of possibilities to stepping into the unknown. It’s as if we heard the words hypertrophic cardiomyopathy followed by a million doors closing around us and we were left searching for the doors still open to us.

HANNAH: So true, Bethany. And the childhood, or teens, we still had left, well, they kind of got ripped away from us. My diagnosis deﬁnitely matured me. I’m 14 and realizing I’m facing my mortality. Then I was taking medications and

CO-FOUNDER OF HEARTCHARGED

HANNAH KEIME

Photo Courtesy: HeartCharged

HANNAH: (continued) doing procedures for old people and seeing the cardiologist with old people and was told the only activities I could do were basically ones for old people. And on top of that, we didn’t know how to make plans for the future or really if we should.

BETHANY: So much unknown. And this at the time in life when people start ﬁguring out their future. And ours is now this great unknown. Then when Hannah was still in her teens, she goes into sudden cardiac arrest in her sleep and is only alive because they had implanted a deﬁbrillator in her which shocked her back to life. So she’s looking at life from the other side of death. Like she said, that will mature you and your outlook.

HANNAH: Plus we still looked the same, which was healthy. People around us don’t understand. This disease is now a big part of my identify and I’m needing to forge it into my new reality. But I didn’t have friends who could relate to that reality. I’m thankful they couldn’t, but that didn’t make it any less isolating.

BETHANY: And somewhat depressing. Even though I don’t think we realized it at the time. We’ve always maintained gratitude as a huge part of who we are and why we do what we do. But still, we have created some posts to show our journey and we compile these videos from back when we were ﬁrst diagnosed. We watch them and we cry. I cry thinking about it. I cry for those little girls and mourn the lives and futures that died when they got that diagnosis.

ERIN: Hannah, you wrote and directed a short ﬁlm about a young girl dealing with HCM that was accepted into the Disability Film Challenge. Was the story based on your own experiences to raise more awareness around this diagnosis?

HANNAH: I’m grateful for this question. It totally ties into where my life went after my diagnosis. I had been heavily involved in dance and sports and then told I couldn’t continue. When you’re on a team, you get together most every day. You spend hours and hours together each week. That’s what you do and who you are. Those are your friends. And, poof, they were all gone and I found myself with a lot of free time which I couldn’t ﬁll with the activities I used to.

I started watching more TV and ﬁlms and realized some important things. I realized the power of media and how powerful ﬁlm and television is. I realized there was a complete lack of representation, especially for young heart patients. I loved seeing the stories but none of the characters ever acted like me. Also hope wasn’t as apparent as I think it is in real life or that it should be. Anyway, I was simultaneously lured into the industry because of the power it held and determined to change the industry because of the power it had yet to capture for the patient community.

I eventually got my filmmaking degree from Full Sail University. One goal I had going in was to present heart patient life, not just to represent ‘my people’ but also to let the general public know that young people have, and too often die from, heart conditions so that more young people would get checked and everyone would know warning signs. I wanted people to be educated enough to take action, but not too scared to act. When I was able a few years ago to participate in the Disability Film Challenge, of course, I told the story of a young heart patient. Now the finished film has to be 5 minutes or less and finished from writing the script to filming and editing in five days. I had a $0 budget and a cast of 4, my best friend, her mom, my sister, and me. We had certain rules we had to follow and certain items we had to include. So definitely a ‘challenge’.

The story I wrote was inspired by my own experiences. Hey they say write what you know. But obviously there is more to my tale than a 5-minute film. Excitingly, I just won a grant to produce another short film which will be a bit longer and that makes me happy because there’s so much more to tell. The main character is a young girl dealing with HCM as well. The new film will delve into a different aspect of living with an invisible disability. However, the challenge film was about friendships. It also included a boyfriend which right there makes it not autobiographical.

I actually see myself in both characters. There is the friend who is loyal despite you having other interests or people in your life or a disability or diagnosis. And there’s the girl with the limitations who is being left behind by able-bodied friends. I loved bringing an invisible disability viewpoint to the challenge. Also out of the 150 ﬁlms submitted, no one else focused on heart disease and that deserve space. Heart defects are the leading birth defect. Also I wanted to show what true empathy and friendship would look like, and it is in no way the same as pity.

“I wanted optimism with a diagnosis.”

HANNAH: (continued) Since I released it, there have been a tremendous number of positive responses and even older white British men said they felt seen in this movie. The heart community definitely loved the representation and I realized I made a good decision going to film school. Now to find someone who made a good decision and became a venture capitalist…

Hearing so many people saying thank you for telling this story has inspired me. I wrote it where you had this ideal, great friend. And I could write it now because I do have some great friends now though from my experience in high school, my outlook then would have been less optimistic. Also I wanted optimism with a diagnosis. Too often if there is any type of heart patient story on TV, the person dies or goes into a coma. With HCM now, we can have the same chance of living, though we need treatments and care to do so. Part of that care requires standing up for ourselves in medical situations and part in personal situations. We deserve better than this girl had in her relationship with her boyfriend. We have value and add value to a relationship.

ERIN: You are big advocates for children to be screened for heart conditions. Have you found that through your work more children are able to be screened now?

BETHANY: We are huge advocates for that. And since day 1. And more children sure are getting screened now. Through our own local initiatives, tens of thousands of children have received free screenings in our area. It could be hundreds of thousands if the parents would opt in or, better yet, parents had to opt out, or, better yet, a heart screening was as routine and accepted as school vision, hearing, and weight checks. So we've made great strides. Our work is leading to legislation. But we’re not there yet and don’t plan to stop until the world realizes that heart conditions affect signiﬁcantly more children than childhood cancers and that the deaths they lead to are most often preventable.

We talk about this constantly. Get children screened and know. Many people tell us they now regularly screen their children because of our work. We know we have helped save many lives. The test does not hurt. There’s not a reason not to. But there is a reason not to only screen athletes. We cannot just screen children planning to play sports at school. Heart conditions and sudden cardiac arrest do not only affect athletes and do not only happen when someone is engaged in signiﬁcant physical activity. 40% of sudden cardiac arrests happen after hours, often when someone is sleeping. If a child had a pre-existing condition and didn’t know it, they may have never felt well enough to play sports. Are we leaving them to die? If a child chooses to play a cello instead of football, does their life have less value to society? This is ignorance at its worst. And beware of people doing sub-par screenings utilizing untrained people. Do it, but do it right.

ERIN: If someone is identiﬁed with a heart condition like HCM, what is included in the next steps?

HANNAH: Not always, but often, the condition can be genetic. Ours is. So get the blood-relatives tested. We know people where unfortunately someone passed away but then that led to testing which saved their siblings and even parents. Better yet when someone is identiﬁed before a horriﬁc event and the family is able to be cared for.

I must emphasize that it is when there is a lack of knowledge and treatment that mortality rates go up. There are so many new treatments, including genetic treatments and medications. Believe us, life does not end with a diagnosis. We have 7 siblings. A few have the gene but the condition is not presenting. Now we know whose children to test because the condition presents differently in different people.

BETHANY: I will say that it is an interesting conversation but for another day about having children when you have a known genetic condition. We’ve also had a doctor bring up to us the idea of ensuring offspring do not have the gene mutation. Just the word mutation is a bit offensive the way the world sometimes deﬁnes the word ‘mutant’. I’ll just say that we are grateful for all of who we are. Also I remember a group of young heart patients being asked if they would

BETHANY: (continued) want their children to also have a heart condition. All said no. Then when asked if they would change having a heart condition. All said no. You can be dealt a really hard hand from birth. Do you know people like that? There are so many extraordinarily magniﬁcent people who face hard things. I think we need to stop focusing just on how to get rid of a challenging condition and put more effort into helping people live with conditions. One or another will always exist. Let’s make sure they live the fullest life. Let’s make sure we are the truest friends.

ERIN: How long after your surgeries to put ICD’s in you did it take you to realise you wanted to do more and start HeartCharged - your not for proﬁt?

HANNAH: It was a while after mine. I got my ICD at age 16 and I was not thinking about social media. I was actually into trying to enact legislation to make sure everyone was screened at that age, alone with addressing school and community groups. It was all credit to Bethany that HeartCharged started. She really came up with the idea to use social media, particularly Instagram, to do more and that is where HeartCharged started, and it’s still our hub. So I’ll let her answer.

BETHANY: I felt impressed to post onto social media definitely within the first year of getting my first implanted defibrillator, which was an S-ICD, the difference being that the wires go around instead of into the heart and it doesn’t pace, only shocks. It was extremely noticeable especially since I am a petite person. I was a dance major in college at the time. Then it was another year until I had the courage and pictures and plan together to put out the first posts. It was the two-year anniversary of my getting Jolt (my name for my defibrillator). PS Jolt has now been explanted and rhinestoned and sits in a case in my office. I now have an ICD. I felt so strongly we really need to put our stories out there. Just five years ago, there was almost no teenage or twenty-something heart patients sharing their stories publicly. Remember, it’s an invisible or non-visible disability. So basically no one will know if you don’t tell them. So why tell them? I was like I am going to totally flaunt my Bionic Babe body and show the world. I do not care. In fact, I am proud and I embrace it. And now hundreds, if not thousands, of our friends are doing the same. Not just amongst protected groups either but for everyone to see and accept. My vision to use the power of social media and start connecting with others like us has worked since the beginning and is only ever growing. I wanted them to know, hey, I have this condition too, I get it, and I’m here for you. In reality, it started as a little page on Instagram just to see and connect. But it’s been incredible. We’ve reached people and have been blessed to help many people, especially to walk them through having ICD surgery.

HANNAH: And those same friends have helped us in a million ways as well. I had a horrible reaction to an iron infusion. One Instagram post and I had within hours the wisdom from about a hundred people with lived experience relating to me and giving me practical advice. And I had the love of hundreds more.

BETHANY: So true. And we’ve done projects, really life-saving and really fun projects, with friends from around the world we’ve met through HeartCharged, like our Sudden Cardiac Art Exhibition. Like our music videos to teach people what to do in case of a sudden cardiac arrest. The list goes on. Our work got amplified tremendously once we began HeartCharged and shortly thereafter made it a not for profit, which can receive tax deductible donations in case anyone is inclined to amplify our work even more.

ERIN: You girls do so much advocacy work - speaking at medical centres, conferences, colleges and many many more locations. How are you changing the face of advocacy?

HANNAH: Recently somebody told us we were making talking about CPR and AEDs cool. So that’s a change! Thinking outside of the box has made a difference. And with survival rates for sudden cardiac arrest remaining under 10%, when they could be 70-90%, well, obviously we need a new tactic. We are definitely known for our eclectic and entertaining style, even though we are talking about deep subjects including disability and death, well preventing death. So it’s really important people are informed. I mean, how are you going to get people to understand if you can’t get them to listen first. That’s one way we are changing the face of advocacy. For too long, messages about heart conditions have either been written in red letters on a white background or white letters on a red background. We prefer something that will capture everyone’s attention.

BETHANY: We also brought the conversation off of Facebook and onto Instagram where younger people are more likely to engage. And our intent is not to talk at you, in red and white, but to empower you to talk for yourself. We also work to address and engage the general public. But we’re talking about heart disease which few people even know affects young people. So we take care to make our content educational and engaging.

HANNAH: I constantly ask myself how do I make something that you would watch and keep watching and feel interested in and not scare you away. I think part of the reason we can do this is because we are passionate about the topic and we are being our authentic selves, young women who advocate and create. And we talk patient to patient, peer to peer, in understandable and relatable ways.

BETHANY: Recently we were asked again to address professionals working in cardiology and electrophysiology at a Medtronic (they make the ICDs we have) conference. We wanted to introduce ourselves in a different way. We did a rap! And from there we got more invitations and they wanted to hear our rap. We got our information out in such a digestible way. And we’re so glad to be young people out there doing this so people realize young people have heart conditions. And we might look ‘normal’ on the outside, but I am dealing with and even battling a deadly heart condition every day. Still I have a positive outlook and gratitude, but it’s not because I deny my realities but because I embrace them. We show the true reality and rawness of it all, but in a human way as opposed to a clinical and sterile approach. We are about the people.

HANNAH: I find it super important not to talk over people’s heads. One thing we do is to translate ‘doctor’ into ‘patient’. I super loved speaking before medical students recently. A long-time cardiologist was with me. He said to those students, if a patient like her comes in, listen to them. She knows more about her condition than you do. She is an expert.

BETHANY: We love that we are being treated with the respect we deserve as professionals, namely professional patients. We also collaborate with many healthcare professionals, again as respected partners with a shared mission. ∎

www.awarenowmedia.com/erin-macauley

ERIN MACAULEY is passionate about all things mental health and is a compassionate voice for those who are struggling with mental illness. Driven to help those most in need, through her vulnerable and open blogging about her own personal struggles, she lifts up others up and gives them hope.

That day, I lost my wife to death and lost my son to mental illness.

MICHAEL STICK AUTHOR & MENTAL HEALTH ADVOCATE

‘BEYOND STIGMA’ EXCLUSIVE COLUMN BY NATIONAL SHATTERING SILENCE COALITION

STROKE OF MADNESS

HEALING HEART WOUNDS WITH HOPE AND ART

Michael and Matt Stick share their story of the devastating effects of mental illness and the power of unconditional love. It is their hope that no family ever has to experience the unspeakable horror, fear, unimaginable pain and grief that their family has had to endure. Matt speaks openly of his recovery journey from serious mental illness; refusing to hide, refusing to allow stigma and judgment to silence him. As advocates, Michael and Matt talk about mental illness to help others to understand that these illnesses are brain disorders. They are just as real as any other and deserve early intervention and treatment. In sharing their stories, they believe that they can bring healing and understanding to this world .

In Michael’s Words

Art is a blessing to those of us who admire it as well as to those who create it. My name is Michael Stick. For my thirty-two-year-old son Matt, art is also therapeutic. It is his healing and life. My son has been diagnosed with a mental illness called bipolar one disorder with psychotic features. On October 5, 2012, Matt’s illness was undiagnosed, and he suffered a psychotic break. He entered a new reality in his mind, one ﬁlled with the voices and visions of demons. As a pastor’s son, he grew up in a church where he heard me preach about spiritual warfare. On that fateful day, Matt became fully psychotic and believed he was in that spiritual world.

Matt was home alone with his mother, my wife Veronica. He saw and heard demons possessing and hurting her. He knew he had to save her so, in an act of love, he destroyed the demons with a knife capable of slaying them. In reality, he stabbed his mother in the heart and killed her almost instantly. He spent two and one-half years in jail before his trial where he was found not guilty by reason of insanity. He was sent to the Oklahoma Forensic Center in Vinita, Oklahoma. In July 2024, he received conditional release and is now home.

Matt draws constantly, and the doctors believe that art is a major part of his healing process. He has been symptomfree for over nine years and is doing wonderfully. As his father, I have loved and supported him throughout this nightmare and continue to do so. Matt has an older brother and younger sister who also love and support him completely.

Nothing can ever prepare a person to lose two people they love, especially in this way. That day, I lost my wife to death and lost my son to mental illness. The psychotic blackouts that had been occurring, which we knew nothing about, were a prelude to the full-blown psychosis he experienced that day.

I can still see Matt come up behind Veronica as she sits on the couch. He would reach over it and wrap his arms around her. I can hear the inﬂection in his voice as he would say, “I love you mama” and kiss her on the cheek. My son would never intentionally harm his mother. They had a great relationship and he loved her more than anything. She knew that her mental illness had been passed to him and she understood what it was like to battle it each day. I struggle to understand the pain and sorrows of the daily war with depression but I’m trying. I love my son and I’ll spend the rest of my life taking care of him.

MATT STICK ARTIST, AUTHOR & MENTAL HEALTH ADVOCATE

Michael and Matt are the authors of the book, “A Father’s Love: A Story of the Devastating Effects of Mental Illness and the Power of Unconditional Love”. This story demonstrates the unconditional love of a father for his son and the faith that sustained them through the unthinkable circumstances of psychosis and loss. Art is Matt’s passion and his healing; his work can be found online: www.artbymattstick.com

EMILY LADAU

Photo Courtesy: Emily Ladau

MORE THAN MEETS THE CHAIR

REWRITING THE NARRATIVE ON DISABILITY

From Sesame Street to the streets of advocacy, Emily Ladau has been using her voice to shift perspectives and spark change since the age of ten. Born with Larsen syndrome and never one to shy away from the spotlight, she’s shown the world that disability is not a deﬁcit—it’s a story worth telling in full color and full volume. Whether through her editorial leadership, her bestselling book Demystifying Disability, or simply through conversations that crack open compassion, Emily leads with heart, humor, and honesty. In this conversation, we talk Big Bird, big myths, and even bigger truths—one question at a time.

ALLIÉ: Your words, Emily, “I was born with Larsen syndrome, a genetic physical disability. I ﬁrst ventured into disability advocacy at age 10 when I appeared on Sesame Street.” My ﬁrst question is what is Larsen syndrome? My second, did you actually get to meet Big Bird? If so, is he as cool as he seems?

EMILY: Larsen Syndrome is a genetic joint and muscle disorder that affects people differently and manifests in unique ways for each person. For me, I’m a full-time wheelchair user, and that’s how I navigate the world. My mom and my

Photo Courtesy: Emily Ladau

“I am a disabled person. I’m proud of that. It’s part of my identity. I’m not ashamed.”

EMILY: (continued) And now for the much cooler question—though I’ll back up and say this: one cool thing about Larsen Syndrome is that it affects about one in 100,000 people, so it’s fairly rare. It’s even more unique that three people in my family have it. I think that’s a pretty fun fact.

Now, about meeting Big Bird—yes! I met Big Bird, Elmo, Oscar the Grouch, and all the Muppets. And they were actually cooler than they seem. I was 10 years old, so the magic was deﬁnitely still alive for me. It was an amazing opportunity to be just another kid in the neighborhood, interacting with these characters who had such an impact on me growing up. And hopefully, I got to play even a tiny role in making an impact on other kids and their caregivers watching—showing the importance of disability representation and that a kid with a disability can just be part of the neighborhood.

ALLIÉ: As a child, then, you were already advocating for disability awareness. So my next question is this: Do you remember the moment you knew—without question—that this was what you were meant to do? That this was the line of work designed speciﬁcally for you?

EMILY: I’m sure my parents would joke that I came out of the womb doing this, because I’ve always been outspoken about disability. There’s a family video of me at around three years old, doing my own little speech for a group of medical students while my doctor was explaining things to them. I was just babbling away in the corner, like, “Here’s what I want you to know about disability.” At seven, I did a disability-related event at my cousin’s school with my mom —we were both speaking on stage. I have no idea what I said, but my mom likes to joke that I stole the show. Then came Sesame Street at age 10. So, yeah, it all felt very natural.

But I didn’t fully see the bigger purpose until later. I actually went to college planning to become a high school English teacher. Then, midway through college, I had what I call my quarter-life crisis and realized that wasn’t the direction I wanted to go in anymore. I wanted to become an advocate. I had no idea what that really meant—and neither did my family. They said, “Okay, but that’s probably not going to pay the bills.” Still, they supported me. So I shifted gears and began to explore a career in disability advocacy. That’s when I truly realized this is what I’m passionate about. This is what I’m meant to be doing.

ALLIÉ: English is great! But you can’t ignore a calling. And you heard yours. You felt it. There are people who grow up with invisible disabilities. You grew up with a visible one. And we live in a world that often tells us what we’re supposed to be before we get to decide for ourselves. What’s one moment from your earlier years that challenged or redeﬁned how you saw yourself?

EMILY: I wish I could say it happened in childhood, but I think it really came into focus during college—which still counts as early years, I suppose.

At the time, I was shifting from wanting to be a teacher to wanting to be an advocate. I attended a meeting for the Future Teachers Association, where a professor gave a guest lecture on teaching students with disabilities. He singled me out and said something like, “You should say ‘people with disabilities’ instead of ‘disabled person,’ right, Emily?”

In that moment, I thought: “Why?” I am a disabled person. I’m proud of that. It’s part of my identity. I’m not ashamed. I don’t need to separate myself from my disability.

Photo Courtesy: Emily Ladau

“As for the myth I’d most like to retire: the idea that disabled people are a burden on society.”

EMILY: (continued) Around the same time, the school hosted a drunk driving awareness week, followed by a disability awareness event. And something about that juxtaposition really stuck with me. Drunk driving is something harmful we want to prevent. Disability is not a problem to be solved. I didn’t want people to just be “aware” of my existence—I wanted them to accept and embrace it.

So, I wrote an op-ed for the school newspaper encouraging people to move beyond awareness and toward understanding and acceptance—to see the humanity of disability. That whole experience was a turning point for me. It wasn’t an all-at-once lightning bolt moment—but a gradual lightning bolt.

ALLIÉ: Yes, I love that. And I love the idea of “nothing for us without us.” We have to be part of the conversation. That was a powerful, beautiful, gradual moment.

Let’s talk about your work—your book Demystifying Disability, your talks, your editorial projects. They all share a common thread: clarity with compassion. When you think about the impact you’re trying to make, what’s one myth about disability that you wish we could retire for good?

EMILY: First, thank you for “clarity with compassion”—what a lovely and meaningful way to describe what I’m always aiming for. I want to welcome people into the conversation about disability. It can be uncomfortable or unfamiliar, but it’s necessary.

As for the myth I’d most like to retire: the idea that disabled people are a burden on society. It shows up everywhere— workforce, education, transportation, healthcare, voting, social spaces. Every issue is a disability issue because every issue affects the disability community.

Yet, we’re still seen as burdens. Accessibility is “too expensive.” Inclusion is “too hard.” But it’s not. Disability is part of the human experience—part of the fabric of society.

So I encourage people not to see disabled people as burdens, but as threads in the incredible tapestry of our world. Not to be too cliché—but it’s true. We’re human beings. Existing shouldn’t be viewed as burdensome.

And this idea of “special needs”? I always ask: What’s so special about my needs? I have human needs like anyone else. If you want to talk about special needs, let’s say: fan me, feed me grapes, treat me like a queen. That’s special. I’m kidding—mostly.

But truly, I’m not a burden. I’m not special. I’m human.

ALLIÉ: Right. Accessing a doorway isn’t a “special” need—it’s a human one. I love that reframing. Let’s talk about storytelling, clearly one of your superpowers. Was there ever a story—your own or someone else’s—that stopped you in your tracks and made you see the world differently?

EMILY: As a storyteller, I thrive on learning about others. My worldview is constantly evolving—not because of one story, but because I’m always listening to many.

That said, what consistently stops me in my tracks are the stories from people who fought for disability rights before I was even born. When they talk about crawling up the steps of the U.S. Capitol, or staging sit-ins for the 504 regulations, I’m just in awe.

We think of laws as static—just words on paper. But they exist because of people and their sacriﬁces. There are stories behind every piece of progress. And every time I hear those stories, I’m reminded: this isn’t just about me. I’m part of something much bigger.

ALLIÉ: Yes—bringing legislation to life by honoring the people who made it happen. It’s powerful. So between all your advocacy, your editing and writing—and just being human—what keeps you going when the work, especially these days, gets exhausting?

EMILY: I’m not as good as I’d like to be at maintaining balance between work and life—mostly because disability is both who I am and what I do. I can’t take off my identity at the end of the day and put it on a shelf.

Even when I try to switch off, advocacy is in the back of my mind. I’ll see something problematic on TV or encounter a barrier in real life—it’s always there.

But what refuels me most is being with others in the disability community. There’s something beautiful about connecting with people who get it. That ﬁlls my cup.

MORE THAN MEETS THE CHAIR

Exclusive Interview with Emily Ladau

https://awarenow.us/podcast/more-than-meets-the-chair

EMILY: (continued) Also, spending time with my family and my ﬁancé helps me unwind. I love the theater, museums, anything cultural. And sure, that can bleed into work too, since I do a lot with cultural accessibility. But sometimes, just losing myself in a really good show for a few hours? That’s healing.

ALLIÉ: Absolutely. Sometimes we need to step outside ourselves, even if only for a moment. One last question. If every person who hears you speak could carry just one message forward, what would you want that message to be?

EMILY: I’m not a motivational speaker—but here’s as close as I’ll get.

I think about advocacy like throwing stones into the ocean. One stone might not seem to do much. But every stone creates ripples. And those ripples do reach others.

None of us have to make the wave of change on our own. We each create ripples in our own way, at our own pace. And together—those ripples become waves.

We’re not in this alone. ∎

Follow Emily on Instagram: @emilyladau

Find her book online: https://awarenow.us/book/demystifying-disability

‘Hollywood Reimagined’ is an exclusive column produced in partnership with Change For Balance and AwareNow Media.

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REBECCA WINTHROP

‘PEQ

PERFORMANCE’

EXCLUSIVE COLUMN BY SONJA MONTIEL

RENEWING THE LOVE OF LEARNING A CONVERSATION WITH DR. REBECCA WINTHROP

Dr. Rebecca Winthrop grew up in rural Oregon, where debates about environmental conservation and social justice were common. She discovered her calling for advocacy at an early age, where her involvement in environmental activism and social justice became the foundation for her future endeavors. As a young student, Dr. Winthrop’s parents created a home where curiosity and independence were nurtured. When she faced challenges throughout her young life, she already developed skills to be able to identify the learning lessons within the discomfort.

One deﬁning moment for Dr. Winthrop was during an internship for the United Nations High Commissioner for Refugees in Costa Rica. She was working on a long-term project to develop a legal framework for women’s rights. The work was tedious and complicated, but she felt that the patience would be worth it towards making a sustainable difference. But, after spending time listening to input from refugee women she realized how important education was. The women appreciated the legal reform efforts but asked instead to be taught to read, so they could go the doctor alone and be able to navigate the world. With humility and discernment, this experience ignited her understanding and commitment for education, which led her to becoming the Director of the Center for Universal Education and Senior Fellow of Global Economy and Development at the Brookings Institute. She also coauthored a book.

"The Disengaged Teen: Helping Kids Learn Better, Feel Better, and Live Better" coauthored by Dr. Winthrop and Jenny Anderson explores the challenges of student disengagement in today’s world and offers strategies to rekindle their love for learning. The book highlights the importance of understanding the root causes of disengagement, such as lack of relevance in the curriculum and insufﬁcient support systems, and emphasizes the need for personalized learning approaches and fostering a sense of belonging in students.

One of the key ﬁndings from the authors’ research is that students engage in learning through four different modes: Passenger, Achiever, Resistor, and Explorer. These modes are dynamic and can change depending on the context. No student stays within one mode throughout their learning experiences, which creates opportunities for parents and educators to recognize symptoms of disengagement and apply strategies to help them return to more meaningful learning experiences.

For example, Dr. Winthrop explains that while Achiever mode is often seen as the pinnacle of engagement, it can lead to fragile learners who struggle with resilience. "We saw achievers avoid taking intellectual risks not because they weren’t interested but instead, they perceived a likelihood of failure for taking the risk,” she noted. Achievers who strived for perfection frequently struggled the most with mental health problems. Instead of parents and educators accepting the outcomes as they are, they are able to detect symptoms early on and apply approaches that would work best for their young learners.

Kids who are not deeply motivated and engaged in their learning will struggle to lead and thrive in a world of AI.

DR. REBECCA WINTHROP

COAUTHOR OF “THE DISENGAGED TEEN: HELPING KIDS LEARN BETTER, FEEL BETTER, AND LIVE BETTER”

SENIOR FELLOW AND DIRECTOR OF THE CENTER FOR UNIVERSAL EDUCATION

RENEWING THE LOVE OF LEARNING

Written and Narrated by Sonja Montiel

https://awarenow.us/podcast/renewing-the-love-of-learning

Through stories, the book suggests practical strategies for educators and parents to help students move towards Explorer mode, where curiosity meets drive, and students become unstoppable learners…for life. No matter where the student is in their learning journey, these strategies can re-engage students and transform their educational experiences, meeting them where they are at.

Dr. Winthrop envisions an education system that prioritizes student engagement and holistic development. She advocates for policies that support the diverse needs of students. "Kids who are not deeply motivated and engaged in their learning will struggle to lead and thrive in a world of AI," she warns. Dr. Winthrop urges parents and educators to take proactive steps in their own communities to create engaging and supportive learning environments. She hopes her book and the accompanying toolkit will provide adults with the tools and understanding they need to support their children's learning journey. ∎

About Dr. Rebecca Winthrop

Rebecca Winthrop is a globally recognized education expert and the director of the Center for Universal Education at the Brookings Institution, where she leads efforts to transform education systems so all children can thrive. An adjunct professor at Georgetown University, she advises organizations from the UN and the White House to school districts and Fortune 500 companies, championing inclusive, high-quality learning through evidence-based strategies. She founded the Global Family Engagement in Education Network, leads the Brookings Global Task Force on AI and Education, and serves on multiple inﬂuential boards and advisory committees worldwide. A proliﬁc author, her recent works address student disengagement, civic education, and systemic transformation. Her research has been widely featured across major global media platforms.

SONJA MONTIEL

Co-Founder of PEQ Performance Consulting www.awarenowmedia.com/sonja-montiel

SONJA MONTIEL (MA Education) is a cofounder of PEQ Performance Consulting LLC and cohost of “The DH Effect” podcast. She and her partner, Hilary Bilbrey, guide individuals, families, and teams to consistently reach successful outcomes through positive and emotional intelligence strategies. During Sonja’s 23 years working with thousands of teens and young adults worldwide, she began to witness many societies creating an unhealthy hyper-achieving culture that misguides our young people in their pursuit of living a life of fulﬁllment. Sonja is changing that narrative highlighting educators around the world who dare to think differently about education. (www.peq-performance.com)

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Photo Courtesy: Mike Brown

NO TIME TO WASTE TURNING A TERMINAL

DIAGNOSIS INTO AN URGENT MISSION

At 43, Mike Brown—an accomplished federal agent, husband, and father—was diagnosed with ALS. But instead of retreating, he stepped forward. Faced with a terminal diagnosis, Mike made a conscious choice: to live more, not less. In the time since, he has become a force of purpose, reminding the world that clarity often comes not in comfort, but in crisis. Through honesty, grit, and grace, Mike is teaching others not just how to survive—but how to truly live.

ALLIÉ: You were 43 when you were diagnosed with ALS—a moment that I can only imagine changed everything. Looking back, what did that diagnosis awaken in you, Mike? What did it awaken that had perhaps been dormant for the ﬁrst 42 years?

MIKE: That’s a phenomenal question. We go through life knowing—at least in the back of our minds—that we’re all going to die. That’s part of life. But in our minds, especially when we’re younger, that’s a “future problem,” right? So we don’t really take into consideration that, A) you can actually go at any time—tragedy can happen—and B) that

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BROWN

MIKE BROWN

COACH, FATHER & ALS WARRIOR

Photo Courtesy: Mike Brown

“Suddenly, I had an expiration date— and it was moved up signiﬁcantly.”

MIKE: (continued) So when I received a diagnosis of an incurable, terminal disease, it made everything that much more real. Suddenly, I had an expiration date—and it was moved up signiﬁcantly. You have life plans. You have a career, a family. The goal was to grow old with the spouse and watch the kids grow. Then all of a sudden, that future is seemingly going to be taken away. And while, yes, that’s true for anyone at any time, the difference is, I was forced to reckon with that reality immediately.

It opened my eyes. It made me understand that we can’t dwell on the past, and we can’t live too far into the future. We’re supposed to experience what’s happening right now.

Yes, this diagnosis is terrible—it’s a horrible thing to go through—but there’s a blessing in disguise. I enjoy each moment more. I appreciate each interaction more—not just with my family, but with everyone I come into contact with. We don’t tell our loved ones we love them enough, and when we do, we often do it out of habit. I make the joke, “Make it weird.” Say it so much that the other person’s like, “Yeah, I get it. You love me. I’ll see you tomorrow.” But the reality is… you might not.

There’s so much we let disturb our every day that really isn’t that important. I’m not perfect—my kids still drive me nuts, and I still drive them nuts—but I’m more aware. Let’s say I used to be aware 25% of the time. Now, it’s more like 85%. I’m on more. I cherish the moments more.

ALLIÉ: Absolutely. I love that you say your awareness shifted from here to here. Maybe we can’t ever get all the way “there,” but moving closer—that feels like the goal.

MIKE: Exactly. And I’d argue that’s what being human is about. We’re not perfect. But in my mindset—which has definitely shifted over the past year and a half—our imperfections are what make us perfect. If we were always “on,” we’d be robots. That’s boring. The fact that we’re flawed is what makes us flawless.

ALLIÉ: Yes, I love that mindset. Let’s talk about something powerful you’ve said: that your mission now is to ensure no one has to wait for a terminal diagnosis to start really living. So what does really living mean to you today? And how would you deﬁne it for someone who thinks they still have all the time in the world?

MIKE: Great question. My mission now is to help just one person. When I talk to different groups, that’s my goal— reach one person. If I do that, I’ve done my job. Because that domino effect can go on to help others.

We all hear the clichés—“live life to the fullest,” right? But living life to the fullest every day is impossible. What does that even mean—skydiving into Disney World and then launching to the moon? It’s unrealistic.

What I try to emphasize is: we have zero days to waste. That doesn’t mean you need to do something amazing every single day. It means don’t waste your days being angry or holding grudges. Yes, sadness and depression are real and complex, but we don’t have to stay in those places.

Not every day has to be physically productive. If you spend the day watching movies with your family, that’s not a wasted day. That’s a great day. The lawn will get mowed. The laundry will get done. I used to be so meticulous. But now? I let the small stuff go.

It’s everyone else around me. Their presence, their support—that’s what gets me out of bed.

MIKE BROWN COACH, FATHER & ALS WARRIOR

Photo Courtesy: Mike Brown

“In some ways, it’s harder on the people around me.”

MIKE: Do you have kids?

ALLIÉ: Oh yeah.

MIKE: Then you’ll laugh at this. Right after my diagnosis, my son—he was around 11 or 12—jumps on our bed to watch TV with the dirtiest socks ever. Before ALS, I would’ve ﬂipped out: “What are you doing?! Your socks are disgusting!” But in that moment, I stopped. I thought, What’s the big deal? They’re just socks.

And that shift in perspective applies to work, too. Your job doesn’t deﬁne you. It’s just a means to live your life. In law enforcement, that gun and badge often become someone’s identity. But when you leave the job, the machine keeps moving. We’re all just cogs—and that’s okay. But your identity should be rooted in who you are outside of work.

ALLIÉ: That’s such a good point. And speaking of work, let’s talk more about your career. As a federal agent, your job was to protect others. Now, you’re still protecting—only this time, it’s people’s perspectives you’re trying to save. How has your sense of duty and service evolved since your diagnosis?

MIKE: It’s deﬁnitely shifted. I spent 10 years as an air marshal, focused on making sure 9/11 never happened again on our watch. Then I served 5 years with the Secret Service, and now I’m a postal inspector. I love the job—being an investigator, protecting people.

But since the diagnosis, being in the ﬁeld has become harder. So I’ve pivoted. Now I travel and share our story. It’s not just about the disease—it’s about perspective. We all go through tough things. And yes, I have it pretty bad. But some people have it even worse. So if I can share a message that helps even one person shift their perspective, then it feels like an extension of my 17 years in service—just a different kind of mission. And I welcome it.

ALLIÉ: I love that you called it our story. It’s not just your journey—it’s everyone around you who’s been impacted and changed alongside you.

MIKE: Absolutely. In some ways, it’s harder on the people around me. I used to be built like a bodybuilder—25 years in the gym, every day. That was part of my identity. And now? That’s been stripped away. My wife and kids have only ever known me that way. Watching that deterioration is heartbreaking for them.

When you’re going through it, you just push forward. But they see it. They’ll remember the decline. That’s tough. And they carry that memory long after I’m gone.

ALLIÉ: It is tough. Let’s talk about resilience. It’s a word that’s often used but rarely lived the way you’re living it. What does resilience look like on your hardest days? How do you keep showing up with purpose, with passion—even when the pain is invisible to others?

MIKE: That’s a great question. I haven’t really said this before, but I’ll share it here. There’s a little bit of… deception. And what I mean is—it’s not just me digging deep. It’s everyone else around me. Their presence, their support—that’s what gets me out of bed.

MIKE: (continued) They don’t have to say anything. Just knowing they’re there pushes me forward. I coach several teams, and I use those kids and coaches as motivation. They give me two hours of freedom—freedom from thinking about the disease. I’m always aware of it, but for those couple of hours, it’s not in the foreground. So to answer your question: it’s the people around me. They don’t even realize the impact they’re having. But they’re everything.

ALLIÉ: That makes perfect sense. I love how you said that—you get to step outside yourself for a moment, to live through someone else’s joy.

MIKE: Exactly. And here’s the strange part—I’ve learned that we all have an impact on others that we may never realize. This journey, as awful as it is, is like a very long, slow goodbye. And during that time, people tell you things they normally wouldn’t. You ﬁnd out how much of a difference you made in their lives.

I tell people: I hope you never ﬁnd out how much impact you’ve had. Because that usually means you’re saying goodbye. It’s a strange but beautiful realization.

ALLIÉ: It really is. So, one ﬁnal question: If you could go back and whisper one thing to your 30-year-old self— knowing what you know now—what would you say, and why?

MIKE: Two words: Be patient. Some of us are wired to rush through life. But I’d tell myself to slow down. Don’t get too far ahead of yourself. Enjoy what’s right in front of you. The past is funny. We all wake up at 3 a.m. remembering something cringey from years ago, right?

ALLIÉ: Yes!

MIKE: But you can’t go back. And you can’t jump ahead. All you have is now. So be patient. As a husband and father, I’d say the same: be patient with them. Be patient with yourself. Yes, tomorrow isn’t guaranteed, and yes, we have zero days to waste—but that doesn’t mean we should rush through life either. It’s a bit counterintuitive, but that’s the balance—don’t waste time, but don’t speed past it either.

Photo Courtesy: Mike Brown

NO TIME TO WASTE

Exclusive Interview with Mike Brown https://awarenow.us/podcast/no-time-to-waste

ALLIÉ: Exactly. Enjoy the now. We’re always asking, what’s next, but the truth is: what’s next is what’s now.

MIKE: Right? And maybe I’m just archaic, but it literally took a terminal diagnosis to adopt that mindset. I’m sure there are people out there who already get it—who don’t need something like this to wake up to that truth. But for most of us, I think we get stuck looking backward or forward and forget to live right here.

ALLIÉ: It’s so strange, isn’t it? That we’re called human beings, but just being is the hardest thing to do.

MIKE: Totally. And not to go too far off-topic, but this journey has made me question everything.

Are you spiritual?

ALLIÉ: I am.

MIKE: I ﬁnd myself constantly wondering—Is this it? Is there more?

No one really knows. People have beliefs and hopes. But now I think about it all the time. Living is amazing. So it’s hard to imagine something better. But who knows… It’s a crazy mind game.

ALLIÉ: I think we’re all part of something bigger. Whatever it is, I try to stay curious—not scared. And for the now we’ve shared here today, Mike… thank you. Thank you for your wisdom, your vulnerability, and your purpose. Thank you for helping us all become a bit more aware… now.

MIKE: Thank you for saying that. You never know if you’re wasting people’s time. So to hear that? It means everything.

ALLIÉ: Not wasting my time. Not wasting anyone’s time, Mike… Thank you so much. ∎

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COLUMN BY TANITH HARDING

POLLINATING POSSIBILITY

PLANTING SEEDS OF AWARENESS THROUGH HER STORY & STRENGTH

Lucile Morehouse is a 14-year-old environmental activist from Choctaw County, Oklahoma who has created a 4-H environmental service project called ‘Lucile’s Pollinator Project’. As part of the project she writes and receives donations to create pollinator seed packets to give away for free. Her project has planted 100,188 square feet of pollinator seeds in 32 different states. She joins me today.

TANITH: Lucile, I love so much that you created Lucile’s Pollinator Project at the age of 11! What made you come up with the idea?

LUCILE: My mom was a beekeeper when I was growing up. She was really big into nature and everything. And we actually had a couple beehives and I'd always go with her to her beehive groups and their meetings. As we attended beekeeping classes, I learned how important bees were for the environment at a young age. I wanted to help since there seemed to be fewer pollinators. I started to think of what they needed to survive. The answer was a diverse diet to ward off starvation and disease. I then took it to the next level and created my project. I think that's where it really started my love for pollinators.

TANITH: You have already reached over 584,933 people through television, radio, newspaper, seed distribution, and workshops, and have started to do public speaking around the subject of pollinators. What are your plans to expand your reach?

LUCILE: I want to do more local projects, and I want to do more speaking as well. We actually were just at a a garden show, and I had such an amazing experience with everyone, and got to talk about my project. I really felt like I reached a couple people through thatA and so I just want to get out of my local area and try to go international even more.I am going to continue to do everything that I am doing now but through my new partnerships and new relationships, I have been expanding my reach to new groups. My goal is to get more seeds out to more people.

TANITH: In addition to your project you are also taking an online Pollinator Steward Certiﬁcation course. What does the course involve and how will it help you to grow?

LUCILE: The Pollinator Steward Certification course is held by the North American Pollinator Protection Campaign (NAPPC). They teach about the importance of pollinators and how to protect them. One thing that I have learned is that honeybees are domesticated. Meaning they are taken care of by humans. They are not as critically in danger as our native bees, that have no one to look after them. If we create habitat for them and give them food through native plants, they have a better chance of survival. I am learning about bats, ants, and birds that all have a hand in pollination. I am taking this information I am learning from The Pollinator Steward Certification course and educating children throughout Oklahoma on the importance of helping them and educating them on the critical role they play in natural resource conservation and agriculture. I even hosted Zooms to the Idaho School of the Deaf and Blind and STEM innovators in New Jersey. I love teaching the knowledge that I have and learning more from experts in the field.

TANITH: You were recently recognized as a ﬁnalist at the 2024 Global Youth Awards for the Environmental Change Category and have since become an ambassador for Legacy Project. How does it feel to be recognized by an international charity for the work you are doing?

LUCILE: I never, ever imagined that something like having a passion for pollinators, can become so big. It is humbling to be recognized for my efforts to conserve pollinators. I have been blessed to become a Global Change Ambassador and hope that another children can be inspired by my project and go and create something that they are passionate about.

TANITH: This year you will be giving away 2,000 pollinator seeds and 1,000 common milkweed seeds for Monarch Butterﬂies. What is the story behind the project, and how can people support it?

LUCILE: The reason the project started was because we're in the middle of the Monarch migration pattern, and we always see them here when it's their time to come by. We wondered why they never stopped by this time and then through the program, we found out it's because there's way less common milkweed in the Midwest. That was the reason and so we knew need to do something about that. That's where our idea for the milkweed came from. Our idea was to get donations, create pollinator seed packets, and give them out for free. I started with a grant and have since been able to grow my project every year to help through education, seed distribution, and connecting with other people. I created a Facebook page where you can follow my journey to help the pollinators: https:// www.facebook.com/proﬁle.php?id=100088769383393&mibextid=LQQJ4d

In addition, I also have on my Facebook “Pollinator Pledge” a donation link to PayPal. It takes .86 cents to create a seed packet. We are trying to get 5,000 people to sign for our pledges. My project has been made possible through donors who ﬁnd a need for pollinators in their future. Through the donations and grant writing, I can fund next year’s project. If you cannot donate, please share my Facebook page. This project has been through grassroots efforts, and I appreciate any support at any level.

“No matter how old you are, you can make a difference.”

LUCILE: (continued) I love whenever people do get their seed packets and plant them and send pictures of the ﬂowers. That is my absolute favorite thing. We had a woman in Alaska send us pictures. And even from so far away in the United States, the seeds were able to grow up there, so I know it's going to be able to grow down here. And It's absolutely amazing to see.

TANITH: You are clearly very passionate about the work that you are doing! What advice can you give to other young people that are also passionate and want to make a difference?

LUCILE: No matter how old you are, you can make a difference. For example in our local club, we have this little boy, and he helps out so much. His older siblings do 4H and so he comes to the meetings a lot. He's helped me do so many things, and it just goes to show that even though you're young, doesn't mean you can't make a difference by helping out.

Start with an idea and bounce it off a couple of adults. Then ﬁgure out how to fund it and execute it to completion. You do not have to do it every year. Start with something small, like planting a garden in a nursing home. See if someone can donate plants and get your friends together for the big event. These moments when you give back to your community are so fulﬁlling. Do not wait for someone to come to you, go out and make things happen and be the change you want to see in your future. Because we are the future and this is our earth that we need to help heal. ∎

TANITH HARDING

Director of International Development, The Legacy Project, RoundTable Global www.awarenowmedia.com/tanith-harding

Tanith is leading change management through commitment to the RoundTable Global Four Global Goals of: Educational Reform, Environmental Rejuvenation, Empowerment for All & Creativity. She delivers innovative and transformational leadership and development programmes in over 30 different countries and is also lead on the international development of philanthropic programmes and projects. This includes working with a growing team of extraordinary Global Change Ambassadors and putting together the Global Youth Awards which celebrate the amazing things our young people are doing to change the world.

ALLISON CHENG CHOIR TEACHER AT PALISADES CHARTER HIGH SCHOOL

FEATURE STORY BY GABRIELLA MONTIEL

MUSIC & RESILIENCE

A STORY ABOUT ALLISON CHENG

Allison Cheng is the Choir Teacher at Palisades Charter High School, who has spent her life immersed in the arts, dedicating herself to the community and her students. The arts have woven themselves throughout Cheng’s life. Her parents met through orchestra rehearsal, with her dad giving her mom a ride to their shared classes. She spent her earlier years dedicated to violin, guitar, piano, and choir, taking both private lessons and immersing herself in her school’s arts programs.

Throughout high school, Cheng participated in the school choir, orchestra, and jazz band. When she moved to college, she started to question the direction of her life, and what she would want to do when she graduated. Cheng knew she wanted to pursue music, but wasn’t sure where it would lead her in the future. She decided to major in vocal performance, and took a conducting class that changed her life. She fell in love with the art of conducting by volunteering at a local high school near her university starting in 2015 where the teacher let her take over the class. These high school classes would spark the joy and challenges of working with students at all ages.

During her time as USC, Cheng would travel around many school districts, exposing herself to multiple age groups of students from TK - 12th grade. Because of her experience from volunteering in schools, she gained skills she used during her choral conducting master’s degree programs at USC from 2016-2018 and her masters in Contemporary Teaching Practices K-12 in 2018-2019. After graduating in 2019, she worked with students with general music and choir from TK to 8th grade from 2019-2022; and in August of 2022, she began teaching at Palisades Charter High School.

Teaching at Palisades Charter High School would be the beginning of a time where Cheng would develop her own view on education, music, and community, inspiring and being inspired by many lessons within her time here. Naturally, when asked why she enjoyed conducting, Cheng immediately began talking about her students. She has always been dedicated to creating a comfortable and safe environment within her classroom. In the years prior to Cheng’s arrival, Palisades High School’s choir program was struggling. Cheng is the fourth choir teacher in five years, because the years prior to her arrival were filled with educators who were not the right fit, or not able to stay. This amount of change caused a large disconnect between the students and their environment at school. The directors preceding Cheng left the program feeling unstable, so that upon her arrival, the students would already be preparing to watch her leave within a few months. “If you want students to care, they need to feel cared about,” Cheng says. She understood that she would have to earn her students' trust, and she quickly started to transform the choir room. She opened the doors for everyone throughout the day, layed out snacks and fidget toys, and filled the air with the sweet cadence of choral music. Her students displayed signs of high stress and poor mental health, but Cheng knew that she would not be able to help them until their basic needs of belonging were met. “I knew something was going on, but until they had the snacks, until they had the fidgets, until they felt safe, they were going to say nothing to me. Why would they? Why would they bother?” For Cheng, she knew that fostering a sense of culture and belonging above anything else would be the driving factor in creating, not just beautiful music, but beautiful people. She believes that music offers ways for students to learn how to work with other people, and more importantly, to find their own voice in their surrounding society. As a recent student herself, Cheng is well aware of the questioning that occurs for her students surrounding the direction of their lives.

“At the credit recovery site, Pali Academy, all of the guitars and materials burned to the ground.”

The Palisades High School is only one account of the many cities that were affected by the LA fires. While there are many ways for people to help in sight of this disaster, such as performing and encouraging arts within their own communities, the funding for arts programs such as Cheng’s to get the resources they need to recover is severely low. Donations, no matter how small, are always treated with utmost gratitude. For Palisades High School, they lost access to rooms full of brand new MacBooks, collections of instruments, music libraries, and their entire arts center building. At the credit recovery site, Pali Academy, all of the guitars and materials burned to the ground. While it is unclear what will be able to be recovered after inspections, currently the VAPA program lacks a storage unit to place any retrievable items and to hand out what they have left to students. Consider visiting one of the links/websites on this page to give something back to these programs that are designed with no intent other than to provide a sense of belonging and passion for students, teachers, parents, and children alike. ∎

If you can and feel called, donate to Palisades Charter High School.

Pali Choir: https://givebutter.com/PCHSChoir

Pail Music Tech: https://givebutter.com/PCHSMusicTech

Pali Academy Guitar: https://givebutter.com/PCHSGuitar

GABRIELLA MONTIEL

Singer, Songwriter & Ofﬁcial AwareNow Ambassador for Music & Arts www.awarenowmedia.com/gaby-montiel

Gaby Montiel has been nationally recognized as a soulful singer songwriter. As a recording artist, Gaby performs throughout southern California and has been requested to write and record songs for social advocacy organizations like AwarenessTies and Fear of Return. In April 2023, she performed as the youngest female music artist for the national Chick Singer Night Showcase at the Ventura County chapter. She recently performed for 300 art and music high school students in the Oxnard School District for the Oxnard Performing Arts Center, leading a songwriting workshop for 89 music students. She was also selected as the youngest singer songwriter for the West Coast Songwriter Association's Winter Showcase in 2024 as well as the only youth to be selected amongst 20 globally for Successfully Magazine.

www.IamAwareNow.com

JACQUELINE GATES

AUTHOR

Photo Courtesy: Jacqueline Gates

THE PAGES THAT HELD ME

HOW ONE MOTHER TURNED GRIEF INTO GUIDANCE

Jacqueline Gates has lived through the unimaginable—the tragic loss of her daughter Joelle. In the wake of profound grief, Jackie found solace in journaling, ﬁlling page after page for 25 years as a way to heal, to hold on, and to honor Joelle’s legacy. A poet, author, and advocate, Jackie now uses her voice to help others ﬁnd their own path through loss. With faith as her compass and writing as her torch, she invites us to reimagine grief not as something to survive—but something to shape us.

ALLIÉ: I can’t imagine what it’s like to lose a child—but more than imagining it, Jackie, you had to experience it. If you would, let’s start from the beginning. Please take us back 38 years ago. What happened to your daughter, Joelle?

JACQUELINE: It was the worst day of my life… It was January 12, 1987. I was ill at the time, and my ex-husband had the children. They were coming home to go to school and were crossing the highway. The younger child, Heather, was in the car, and Keith, who was 12, was holding Joelle’s hand. She slipped from Keith’s ﬁngers. A gentleman

I journaled for 25 years.

JACQUELINE GATES

AUTHOR

“I’m sorry for crying, but you never forget. She was only 10.”

JACQUELINE: (continued) She ﬂew in front of our home. She was pronounced dead at the scene—but then brought back to life on life support. I ran outside in my pajamas.

The mind is a powerful tool, Allié. I immediately shifted—from physical illness to the shock of grief. They tore me away from Joelle, but I just wanted to surround her. Her body was limp… It was terrible. Truly the worst thing in my life. I’m sorry for crying, but you never forget. She was only 10.

It’s still a nightmare for Keith. The siblings suffer too. And it happened on Grandma Rose Bush’s birthday. It was terrible for everyone.

The ambulance took her to the hospital, and I remember screaming in the hallways. After three days, she was ﬂown by helicopter to Beaumont. She was in a persistent vegetative state. That means you have to be in that condition for more than a month with involuntary movements—like opening and closing eyes—but no awareness. It looked like she was awake, which made it even harder to understand.

I could hardly look at her... to see her that way… And still, I had to keep everyone together—my other two children. I was a single mom. Let me tell you, it rips your heart and soul apart. You’re just... not whole anymore. It was devastating, Allié.

ALLIÉ: I can’t imagine. And it wasn’t just your grief—you were carrying the grief of your children, your whole family. You had to show up for them, while somehow still taking care of yourself. After a loss like that, I don’t know where I would even begin. But you did begin—with a pen. You started journaling.

JACQUELINE: Yes, I did. I always loved to write. I started writing poetry young, and after Joelle, I started journaling. My faith kept me intact. I journaled for 25 years. It wasn’t always neat or organized—it was angry words, scattered thoughts. I was angry at God. I was angry at anyone who looked like Joelle.

I moved through the stages of grief—but not in order. Acceptance took a long time. I followed the model from Elisabeth Kübler-Ross. I loved her books. Over time, journaling helped me ﬁnd peace. And when I found that peace, I wanted to help others.

I asked for a sign. I said, “God, if Joelle is okay, send me a hummingbird.” I was sitting at my dining room table, and a little hummingbird ﬂew past the window. That was my sign… that Joelle was in heaven. That was my peace.

That moment told me I could help others. I believe our manifestations of love, faith, and creativity—through journaling, music, or any form of expression—can bring healing. Maybe not right away. But in time.

ALLIÉ: When it comes to music, was there a speciﬁc song Joelle loved?

JACQUELINE: Yes. She loved Cyndi Lauper.

ALLIÉ: Who doesn’t?

“It was about letting her go.”

JACQUELINE: Right? That was her era. She would’ve been 49 this May 20th. She loved “True Colors.” That was her song. And I still love it, too. I want to see Cyndi Lauper in concert this August with my daughter.

ALLIÉ: Back to the journaling—because it wasn’t just for yourself. You wrote books to help others, too—about grief, about the right to die, about death with dignity. Can we talk more about that? Because I’ll admit—I don’t know much about it. And Joelle made history, didn’t she?

JACQUELINE: Yes. Joelle’s case became Michigan’s first right-to-die minor case. After deep discussion and counseling with Dr. Kennedy—who was the first Black female neurosurgeon in the U.S.—we understood Joelle’s condition. Dr. Kennedy has now retired from Children’s Hospital in Detroit, but she helped us understand the gravity of Joelle’s state.

With guidance from the hospital social worker and Father McGrath, Fran (my ex-husband) and I decided to let Joelle go naturally. But it was election time, and the prosecutor caught wind of it. We were accused of trying to kill our daughter.

There was a seven-day trial. The story went national. There was a bioethics committee involved, and we fought to protect Joelle’s interests. After seven days, the judge asked me to take the stand. He asked what I wanted. Fran and I agreed—we wanted Joelle removed from life support.

My decision was rooted in the truth: Joelle had already died at the roadside. It wasn’t about assisted suicide. It wasn’t Kevorkian. It was about letting her go. The judge ruled that parents had the right to make that decision. I never changed my mind. Fran passed away three years ago. He gave an interview years back—he would be proud of me for continuing to speak out.

ALLIÉ: The fact that there was a seven-day trial… You were already facing the unthinkable—and then to have that legal burden too… I can’t imagine how much that added to the pain.

JACQUELINE: It was terrible. To this day, there is no national legal right to die in the U.S. There are death with dignity laws in 10 states. They apply to adults—18 or older—who are mentally competent and have less than six months to live. With a physician’s approval, they can take medication to end their life.

I couldn’t do that myself, but I understand why others might. People face unbearable pain. Sky-high healthcare costs. And some just don’t want to live through certain diagnoses. You never know what someone else is carrying. We have to lead with compassion.

ALLIÉ: Let’s talk more about you. In addition to the profound loss you’ve endured, you’ve also lived with nonHodgkin’s lymphoma for nearly a decade. Yet you continue to write—with faith and fire. So, on the days that feel heavy or hollow… Where do you go—to find the light again?

JACQUELINE: I take my golden retriever, Buddy, and my husband Richard—he’s my rock—and we go for walks. I love to walk. I pray. I meditate. I talk to God. And I talk to myself. I ground myself. This might sound strange to some, but not to you, I think.

THE PAGES THAT HELD ME

Exclusive Interview with Jacqueline Gates https://awarenow.us/podcast/the-pages-that-held-me

JACQUELINE: (continued) When you have a chronic illness, you have to engage parts of your brain that people often neglect. When I feel myself slipping into illness—mental or physical—I ground myself. I’ve dealt with mental illness for 42 years. I haven’t been hospitalized in over 25.

I walk barefoot—even in the winter sometimes. I look toward the sun, even through sunglasses. And I believe in healing. I’ve experienced healing. You need a support system. You need people who are positive—people who lift you up. Negativity? It’s toxic. I don’t allow it near me.

I love myself. And when you truly love yourself, you can love others more fully. That’s what journaling gave me— self-love, and the power to help others. I also cook for people. My mother was a great Irish cook. I use herbs and broths—healing food. I cook for people who are ill.

And helping others heal... helps me heal, too. ∎

Find Jacqueline’s book online: https://awarenow.us/book/joelles-cry-for-justice

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DR. TODD BROWN FOUNDER OF THE INSPIRE PROJECT & CO-FOUNDER OF OPERATION OUTBREAK

’ EXCLUSIVE COLUMN BY DR. TODD BROWN

AUTISM ISN’T THE ENEMY RFK JR IS WRONG

They say the scariest monsters wear suits. Smile too much. Talk like they’ve got secrets, not answers. That’s how Robert F. Kennedy Jr. has been talking about autism, like a man who thinks he’s discovered a horror no one else has noticed. He hasn’t. But he's doing damage in trying to simplify a story as layered and human as this one, and not the kind that can be undone with a headline correction or a clean apology.

Kennedy called autism a “tragedy.” He said it “destroys families.” He spoke about it with ﬁnality, like a man who’s never sat in a living room with a kid on the spectrum and actually listened. The real tragedy isn’t autism. It’s the way people like him talk about it, acting as if it’s a curse, a contamination, a ghost that came from nowhere and stole the child you were supposed to have. Autism is not new. The way we understand it is. Let’s get the facts straight.

Kennedy leaned hard on the myth of the “regressive” autistic child. The idea that everything is ﬁne until the second birthday, and then, suddenly, it’s not. But science has moved on. We now know that differences in brain development show up much earlier. As early as six months, researchers can sometimes see signs in eye contact, movement, and the subtle rhythms of early interaction. The change isn’t sudden. We were just too late in learning how to see it.

But Kennedy’s most dangerous claim, the one that lingers in headlines and backrooms, is that autism is an “epidemic.” He insists that something in the environment, something sinister and recent, must be behind it. It’s an idea designed to scare. It’s also false.

Autism is, by all credible estimates, between 60 and 90 percent heritable. Nearly half of diagnosed cases can be linked to specific, identifiable genetic differences. That doesn’t mean the environment plays no role. Things like air pollution, prenatal health, and premature birth can increase risk, but the rising numbers are not evidence of an invisible poison. They’re the echo of something simpler: better tools, broader definitions, and a system that’s finally catching up to what’s always been there.

Back in 2000, when the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM) ﬁrst started tracking data, one in 150 eight-year-olds was diagnosed as autistic. Today, it’s one in 31. The numbers are real. But so is the context.

Autism used to hide in plain sight. Misunderstood, mislabeled, or missed entirely. In the ﬁrst edition of the DSM, the clinical manual used to diagnose psychiatric conditions in the U.S., autism was described as a type of childhood schizophrenia. It wasn’t until 1980 that “infantile autism” became its own diagnosis, and even then, the criteria were narrow. Delayed speech, resistance to change, odd attachments. That was the picture.

In 1987, the picture changed. The criteria expanded, and as expected, more kids qualiﬁed. In 1994, Asperger’s disorder was introduced. In 2013, that, too, was folded into the broader category of “autism spectrum disorder” (ASD). For the ﬁrst time, a child could be diagnosed with both autism and ADHD. Before that, an ADHD diagnosis ruled out autism entirely, even though we now know that over half of autistic people likely have both.

These aren’t just academic changes. They changed lives. They made it possible for people to get help. To get answers. To get seen.

Kennedy waves all this away like it’s an excuse. But science tells a different story. A 2015 study out of Denmark found that diagnostic changes explained 60% of the increase in autism rates among kids born between 1980 and 1991. A U.S. study of special education programs from 2000 to 2010 showed something even more striking: as autism diagnoses tripled, diagnoses of “intellectual disability” fell sharply. Kids weren’t changing. The labels were.

Look at the map, and you’ll see another clue. Autism rates vary wildly from state to state. California has the highest, with 53.1 diagnoses per 1,000 eight-year-olds. Texas has the lowest, with 9.7. This isn’t about the environment. It’s about access, advocacy, and awareness. California pushes early screening. Texas doesn’t. That’s it.

In a recent interview, Annette Estes, who directs the University of Washington Autism Center, says it plainly: “There are beneﬁts to getting an autism diagnosis. So people seek it out.” The stigma is shrinking. The understanding is growing. And parents are no longer afraid to ask questions earlier.

That doesn’t mean every increase is just paperwork. People are having kids later. Older parents face a higher chance of having an autistic child. Medical advances are helping more premature babies survive, another known risk factor for autism. Some environmental elements are real: infections during pregnancy, or prolonged exposure to ﬁne particulate pollution, have been shown to raise the odds slightly. However, none of this supports the apocalyptic theories that Kennedy was selling. And still, he pushes on. He’s promised answers by September, now that he’s been named Secretary of Health and Human Services. He wants to “start from scratch.” He’s suggested investigating ultrasounds during pregnancy, even though a 2023 multisite study of more than 1,500 pregnancies found no link. He’s raised the vaccine question again, even though dozens of studies (including a major one in 2019) have closed that case for good.

The original MMR study, the one that started the ﬁre, was exposed as fraudulent. The lead author falsiﬁed data. Lost his license. But the damage stuck. Fear has a longer shelf life than truth. And now the CDC, under political pressure, has greenlit another study to “re-examine” vaccines and autism. It’s being led by a known vaccine skeptic who was previously disciplined for practicing medicine without a license.

Meanwhile, real science, quiet, complicated, and often underfunded, has been at work for years. Agencies like the National Institute of Environmental Health Sciences have built tools to make sense of vast datasets. They’re not chasing silver bullets. They’re asking the hard questions. The right way.

“There’s no one cause,” Estes says. “And it doesn’t need to be scary.” She wishes there were more ways to communicate that—to talk about the incredible progress made, the mountains moved by parents and scientists working together, the real beauty of understanding something complex, not to fear it, but to help.

But fear sells especially when it’s framed as clarity. The real story is harder. Autism is not a tragedy. It’s not a monster. It doesn’t steal children. It changes how they grow. And that difference, when seen with care instead of fear, can open doors instead of closing them. The story we tell about autism matters. Kennedy is telling the wrong one. And too many people are still listening. ∎

DR. TODD BROWN

Awareness Ties Columnist

www.awarenowmedia.com/todd-brown

Brown is a winner of multiple education awards, including the U.S. Congressional Teacher of the Year Award, U.S. Henry Ford Innovator Award, Education Foundation Innovator of the Year, and Air Force Association STEM Teacher of the Year. Dr. Brown is the creator and founder of the Inspire Project and cocreator of Operation Outbreak, which was named the Reimagine Education Award for Best Hybrid Program in the world. He is also an Education Ambassador for the United Nations and an Educational Ambassador of the Center for Disease Control (CDC). www.IamAwareNow.com

After a few years of bitterness, I took my life back and turned my pity into power. HEATHER CHERVENY ONCOLOGY ESTHETICIAN & LUPUS WARRIOR

Photo Courtesy: Heather Cherveny

UNDER MY SKIN

AN ESTHETICIAN’S STORY OF LIFE WITH LUPUS

Diagnosed with lupus after years of unanswered questions, Heather Cherveny knows what it means to live with uncertainty — and to fight for clarity. As an esthetician, she not only helps others feel confident in their skin, but also brings compassion shaped by her own experience with a chronic illness. Through chemotherapy, flare-ups, and monthly infusions, Heather continues to show up — with strength, grace, and a fierce sense of purpose.

ALLIÉ: You went undiagnosed for quite a while before ﬁnally learning it was lupus. Can you take me back to that time — the symptoms, the misdiagnoses, and how you ﬁnally got the answers you needed?

HEATHER: In February of 2018 I was very sick for 2 weeks with Type A flu, strep, and double ear infection. During that time, I ran a high fever on-and-off for five days. After getting well from the flu, my symptoms started to progress more-and-more each month, which led me down a battle of being undiagnosed for 18 months. After four different healthcare systems in Michigan as well as Mayo Clinic in Rochester, MN, nine different Rheumatologists, several monthly tests, three one-week long stays in the hospital, and $20,000 in debt; I was finally diagnosed with SLE Lupus in September of 2019 in Lansing, MI. The doctor and his team took their time and reviewed two-3-inch binders of test

Photo Courtesy: Heather Cherveny

“When ﬁrst diagnosed I pitied myself, as I no longer knew myself.”

HEATHER: (continued) with Adult-Onset Still's Disease (AOSD-Systemic Inﬂammatory Disorder), Mastocytosis, and Connective Tissue Disease. I was also made to feel like a female that was overstressed and burdened, which was causing anxiety and depression that was leading to weight gain.

I had an array of symptoms. Below are some symptoms that I dealt with daily: debilitating fatigue, weight gain-20+ pounds in 3 months (gave a bloat look), swelling/extreme edema, bloating, urinating visible blood, protein in urine, mouth & nasal sores, brian fog, hair loss, bone & joint pain, tenderness, and burning, low grade temps, felt like I had the body ﬂu daily, hives & rashes (malar rash once in 7 years), and photosensitivity. I had 9 of the 11 symptoms that the American College of Rheumatology use to help diagnose lupus. However, because my ANA was positive low and not consistently positive and my blood complements (part of the immune system) were high (C3 & C4), which are normally low with lupus, I keep being told I did not have lupus and was left untreated. At one point, a physician at a hospital in Royal Oak, MI told me after looking at my blood work that my, "blood results are not credible."

After three hours of waiting in the doctor's office for him to review my files, he walked in and said, "There is no doubt you have SLE lupus, and you were a "lab rat" for many of these hospitals. It's a shame all the testing you went through when it was so obvious that you were suffering from lupus (lupus nephritis)." When I received that answer that I had SLE Lupus, my mother and I cried as it was a relief of validation. I felt heard and that I was not crazy. It was bittersweet, finally knowing that I would get help. Many times, prior to this visit, I would leave physicians' offices crying and walk down their "hallway of shame" is what I would call it having no answers, feeling I wasted my breath, and hopeless.

In 2019, I was put on Hydroxycholoroquine (Plaquenil) that made me break out in horrible hives a month into it. These hives did not resolve for 2 months and were all over my body (see image). He then prescribed me Leflunomide (Arava) a month later and eventually in February 2020 I started monthly infusions specifically for lupus, Benlysta. Benlysta has not cured my lupus or taken away all my symptoms, but has made months more tolerable until summer of 2022 when I had another lupus flare that forced me to start low dose oral chemo for 7 months. Since being off chemo, and stopping April 2024, I am trying to find my way back to what makes sense for me and the rest of my life. After 7 years of being sick, I am now diagnosed with the following: SLE Lupus, Fibromyalgia, Neuropathy, POTS (Postural Orthostatic Tachycardia syndrome), MALS (Median Arcuate Ligament Syndrome), HATS (Hereditary Alpha Tryptasema Syndrome), and Raynaud's Syndrome.

ALLIÉ: Living with an autoimmune disease like lupus changes everything. How has it shifted the way you move through the world — physically, emotionally, and even spiritually?

HEATHER: Lupus has completely changed my outlook on life. I used to be a complete control freak of every situation in my life as I wanted to always know my outcome. Now, I realize I am not in complete control, and I realized that after laying helplessly in a hospital bed during one of my stays. I have lost a lot due to lupus: savings, career, home, friendships, health, social life, consistency, predictability, etc.... When first diagnosed I pitied myself, as I no longer knew myself. I grieved who I used to be and didn't like the new version of me. I was angry and took it out on my loved ones by lashing out and being short tempered. I was depressed and anxious not knowing what was to come for me in my future. Yes, my new doctor gave me relief with a diagnosis, but he did not prepare me for the mental stress that would follow. After a few years of bitterness, I took my life back and turned my pity into power. I did not want lupus to define me anymore! I got myself into counseling in 2021 to work on my mind and soul. I worked on my body by feeding it better nutrition, grounding myself with meditation and breathwork, walking in nature, yoga, reiki, prayer/faith, and anything that would feed my soul positivity. After being on chemo in 2022, my Rheumatologist told me it was probably best I now work part-time due to stress inducing my lupus flares. I no longer could mentally handle that stress of a "corporate world" position.

Photo Courtesy: Heather Cherveny

“I eventually found strength to become the best version of myself… Looking back, I am proud of myself for not giving up as the odds were against me.”

ALLIÉ: You recently went through seven months of oral chemo. That’s a lot for anyone to carry. What got you through the hardest days, and what surprised you about your own strength?

HEATHER: Losing my six-figure career devastated me and made me feel useless especially to my daughter. I have always defined myself by my status, career, success, and now I lost it due to lupus. While on chemo, I also lost my job. My family and closest friends are what keep my spirits up and get me through my hardest days. I focused on deep prayer seeking answers during a desperate time of what I should do with my life now that I had lost so much at one time. I eventually found strength to become the best version of myself. I became Reiki I & II certified during this time mainly for myself and in May of 2024 I started Esthetics school with the goal in mind to become an Oncology Trained Esthetician. All through school, I suffered with severe chemo brain fog and looking back I am shocked by my drive to not give up. I still got up every day and went to school sick, smiling, took weekly tests, and served the public while still being ill. It was so challenging, but I did it as I had a personal goal to meet and a daughter to provide for. Looking back, I am proud of myself for not giving up as the odds were against me.

ALLIÉ: As an esthetician, you're in the business of healing and helping others feel conﬁdent in their skin. How has your personal experience with lupus and skin sensitivity shaped the way you care for your clients?

HEATHER: My lupus life and now living through 7-months of oral chemo has allowed me the personal understanding of what others face that have skin sensitivity. I am now the only Oncology Trained Esthetician (OA & NCEA Accredited) in Mid-Michigan and in June I am doing additional esthetic training called Immunoesthetics with a well known doctor, Dr. Erin Madigan-Fleck, to assist my autoimmune compromised clients. In my spa room I use a clean all-natural skin line that is specifically for sensitive and compromised skin, Hale & Hush. It is formulated with botanical oils, flowers, and herbs. If there is a scent, it is natural to the product (oil/flower) in the product. They have specific products for oncology clients. I have a hospital grade air purifier in my room as I am immunocompromised, but to also keep all my clients safe. Many add-ons you have to pay for at other spas you will receive complementary with me such as the Infrared red light panel you'll receive during your facial. Any oncology client going through active chemo or radiation receives a $40 Revive & Thrive facial as the goal is to prep, hydrate and restore your skin during this challenging time. The bonus is my room is within a chemical sensitive salon, Accredo Collective, which is the only one in Mid-Michigan. The salon does not diffuse oils, burn candles, no traditional perms, no Brazilian blow-outs, no acrylics, and all products used are organic. The owner has created a safe environment for everyone to visit and have a pleasant experience. I have created affordable rates as I understand being on short-term disability with limited income and the effects medications specifically chemo has on the skin. I wanted to create a space for people dealing with these challenges that I have faced and had no one to turn to for help.

ALLIÉ: For someone out there still waiting for a diagnosis, feeling dismissed or defeated — what would you say to them? What do you wish someone had said to you when you were in that place?

Exclusive Interview with Heather Cherveny https://awarenow.us/podcast/under-my-skin

HEATHER: If you are feeling defeated, don't give up! This is from one warrior to another. I know it sounds cliche, but it is the honest truth. It will feel like the system is against you, but there is a doctor for everyone, and you just have to find your doctor AKA "medical tribe". It takes time and dedication to your health. I was told many times my case was "too complicated to take" or one doctor wrote down an exercise plan instead of reviewing that my inflammation blood markers were 8 times the normal limit or that my DSDNA was raising each visit. It is costly to find answers to your health: your time, money, and energy, but don't give up advocating for yourself. You can only count on yourself for answers. Do not waste your time on doctors that are not in your corner. You want a doctor who is going to think outside the box and willing to find answers. If they are pushing back, move on to the next doctor. Don't "park" yourself for a doctor that will not listen. Always network with other warriors by looking for Facebook sites or events that relate to your situation. Try to get involved so you don't feel alone. Find your tribe! Listen to a good Podcast or read a book to understand your new body. Do your research and try different treatments as everyone responds differently to medications. I also feel it is important to have a healthy balance between natural remedies and western medications. At this time, I take more supplements than western medications. Try to organize your documents: print all your tests that are abnormal and put them in a binder within clear sheets. Take pictures of your visible symptoms. Remember doctors see you once a month or once every three months. Keep a good health journal of your daily symptoms or when you are not feeling well. An involved doctor will want to review this information. Also, write down all failed medications, doctors you visited & outcome, major tests you have done (i.e. biopsy), have access to all patient portals, and a written history of yourself with your timeline and family medical history.

ALLIÉ: For sharing so much of your journey, thank you, Heather. Is there anything more you’d like to say?

HEATHER: I want to give special thanks to my mother, Jackie, and Richard, for being at several appointments with me that last 7 years. My daughter, Shealynn, for supporting me at Lupus Walks by volunteering and trying to understand my disease a little more each year. I know it has been hard on you, and I appreciate your love. My closest family and friends for checking on me and being there for me. My boyfriend, Jason. He’s been a rock the last 3 years.

May is Lupus Awareness month. Sharing my story is important to me as there are people in my shoes too timid to share their story, or for those that are ﬁghting for a diagnosis and feel in their soul they have lupus. ∎

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ALEX SEARLE FOUNDER OF HUMBLE MIND

Photo Credit: Vitor Diniz

‘THE

HUMBLE MIND’ EXCLUSIVE COLUMN BY ALEX SEARLE

UNLOCKING THE PAST CULTIVATING A HUMBLE MIND

I have long been captivated by the study of history… As a child, I devoured books about the great battles, legendary ﬁgures and grand civilisations that shaped our world. Ancient Greece, with its philosophers and foundational ideas about democracy and reason. Egypt, with its towering monuments and desert mysteries. Mesopotamia, where Uruk and Babylon ﬁrst laid the groundwork for urban life, and the enigmatic societies of Mesoamerica, whose achievements in astronomy, architecture and art still hold secrets we have yet to fully understand.

I'm often devouring great podcasts like The Rest is History or Dan Carlin's Hardcore History to keep my addiction to the topic alive and well. But beyond the allure of these ancient worlds, what has always intrigued me most about history is its ability to reveal the patterns of change. Wars, revolutions, golden ages and declines all tell a story far greater than individual events: they reveal the cycles and patterns of our human nature.

When studied curiously, history offers a mirror in which we can see ourselves, as part of a much longer, unfolding story. The past, as I once heard it described, is something that no longer is, but somehow always was. In that paradox, it holds a power unlike anything else: to teach, to warn, and to remind us of who we are now because of who we were.

THE PRESENCE OF THE PAST

If we take this same lens of historical inquiry and apply it inward - to ourselves as individuals- the journey naturally ends up back at the start of our own personal history: childhood, adolescence and the ﬁrst formative experiences that shaped us.

Here, an interesting contradiction emerges. Our earliest memories, our ﬁrst loves, the schools we attended, the teachers who inspired us, the moments that ﬁrst sparked a passion within us: these experiences feel deeply personal, uniquely ours. And yet, they are also entirely universal. The details differ from person to person, but the shape of the journey is one we all share. Across cultures and generations, the human experience carries common threads of joy, pain, loss and discovery.

Our pasts are both personal and collective, intimate and archetypal. And it is in this paradox that we ﬁnd one of the most valuable keys to understanding ourselves. Keeping the experience of our past alive are our memories. Memory is not just a function of the mind - it lives in the body. Our nervous system, the intricate network of electrical and chemical activity, carries not just nutrients and signals, but also physical imprints of our lived experiences.

We often think of memory as something stored solely in the factory behind our eyes, but neuroscience very clearly tells us otherwise: our bodies also remember. The way our shoulders tense in response to stress, the instinctive clenching of the jaw in moments of fear, the deep sense of comfort or dread when we walk into a familiar space - all of these are echoes of past experiences, as though we carry an emotional accounting record in our pockets.

Some memories are vivid, easy to recall. Others, especially those linked to deeper emotional wounds, operate beneath our conscious awareness. In fact, the stronger the emotion tied to an experience (joy, grief, fear) the more deeply that the body has stored it, shaping how we react to the present without us even realising it.

This is where the past becomes a quiet but persistent architect of our present self. The challenge then becomes ours to notice it.

THE LONG TAIL OF TRAUMA

The word trauma often conjures images of extreme suffering, of war, abuse and tragedy. While these are certainly forms of trauma, the reality is that trauma exists on a wider, more nuanced spectrum. Sometimes, it's dramatic. Other times, it is a quiet, gradual conditioning that shapes how we see the world and our place in it.

One of the most difﬁcult aspects of unresolved emotional wounds is that the deeper they run, the harder they can be to access. The mind, in its attempt to protect us, buries pain deep beneath layers of rationalisation, denial or numbness (or a combination of all three). But buried does not mean gone. These imprints still play out in our emotions, relationships and patterns of thinking, often without us realising why.

Take, for example, a child who grows up witnessing a painful divorce. Even if they process it intellectually and believe they have 'moved on', that early experience can unconsciously shape their approach to relationships for decades. They may struggle with trust, ﬁnd themselves repeating familiar dynamics, or self-sabotage when things feel too good (patterns rooted not in who they are today, but in what they once survived). The older they get, the harder it is to even spot these patterns, let alone change them.

This is true for so many aspects of life. We carry old narratives, beliefs and unexamined fears into our present without realising they were never meant to be permanent. The past, when unexamined, controls us more than we care to admit.

In this way, it can feel as though the past is never really in the past. It walks with us, inﬂuencing our choices, our selfperceptions and our ability to connect with others. The challenge, and the opportunity, is to make the unconscious conscious, so that we can heal, release and move forward.

WE CARRY BOTH THE MEDICINE AND THE POISON

To reﬂect on our past is to hold both light and shadow in our hands.

As my friend Michael Boyle put it, we each carry both the medicine and the poison. The past can be a teacher or a tyrant, a source of wisdom or a weight that holds us down. What determines which it will be is not the past itself, but how we engage with it - and engaging starts with noticing, becoming aware and curious about your own behaviour and beliefs (possibly even for the ﬁrst time ever). Like history itself, our past is neither purely good nor bad. It contains the potential for both, and yet none at all. The moment of consequence is that we can choose how to relate to it.

Once again, this presents another paradox of the past: things that happened are set in time and memory, yet they can also be re-examined, reshaped and moulded again. We are not prisoners of who we were, what we did or thought, and that needs to become a felt knowledge right down to the body level.

The truth is that this is not just an intellectual exercise, which is why you'll ﬁnd the opportunity within Humble Mind to study it from a number of angles, whether it's through reﬂection, dialogue with other members or mini-realisations you may have during our events. I'm deliberately using the word study as an indication of how to regard your own past and its tremendous power: at a safe distance, we can examine and learn from it, while not becoming consumed.

The invitation to explore as deeply as you'd like is yours for the taking. We welcome its lessons, honour its impact and, most importantly, ensure that it does not deﬁne who we are.

The past is not our identity. It is a part of you, but it's all of you. Once again, study is the key word. The past is a reference point to study and learn from, not an inevitable destination. When we hold it at the right distance - not too tightly, not too far - we create the space needed to fully engage with the present and move toward a more fulﬁlling present (and future).

TOOLS FOR UNLOCKING THE POWER OF THE PAST

Here are some ways to engage with your personal history in a meaningful way as we've discussed:

● Deep reﬂection: Journaling, meditating or simply taking quiet time to revisit your past experiences with an open curiosity rather than judgement

● Letting go: Identifying old narratives, limiting beliefs or studying past wounds that no longer serve you and actively choosing to release them

● Reading autobiographies: Learning from those who have reﬂected deeply on their own journeys can offer new, unexpectedly useful perspectives on your own

● Speaking to someone you trust: Whether a mentor, therapist, a close friend or a fellow community member here, sharing your story in a safe space can help bring clarity and understanding

● The value of vulnerability: Being open to exploring past wounds with honesty and courage. This begins with the act of asking for help when you need it, which has the wonderful additional beneﬁt of building trust with another person

I hope that this has been helpful.

AN INVITATION TO REFLECT WITH AN EXERCISE

Take a moment to do this… Imagine that your past (warts 'n all) is a small object you can hold in your hand, such as a tennis ball or apple. Hold it in your hand and look at it, imbuing it with all the energy of your past experiences. Sit with it for a while and notice your breathing. Now, ﬁnd an optimal distance to hold the object at. Is it close-up, right by your face? Is it further away at a full arm's length? Don't judge, just notice your comfortability level and how your body responds to it. Our pasts are not chains. They are maps to be studied. ∎

Join the Humble Mind community: https://awarenow.us/join/humble-mind

Find & follow Humble Mind on Instagram: @humblemindofﬁcial

www.awarenowmedia.com/alex-searle

ALEX SEARLE is a father of three, an avid road-tripper, and a passionate enthusiast of music, guitar playing, vintage books, nature adventures, yoga, and Indian cuisine. A proliﬁc entrepreneur, podcaster, writer, startup advisor, and community builder, Alex has spent over 12 years collaborating with ambitious startups, global brands, and diverse entrepreneurs and organizations worldwide. Over the course of his career, he has founded four businesses, crafted six- and seven-ﬁgure content campaigns in industries such as software, travel, and energy, advised boards and executive committees on international digital strategies, and developed milliondollar pitch decks for blockchain and healthtech startups. His expertise lies in building stronger businesses and communities through authentic connection, peer-to-peer skills development, and human-centric storytelling.

www.IamAwareNow.com

Miles to go before we sleep…