2023 ISSUE 5
2 Beneath Your Beautiful Magazine PUBLISHER | DESIGNER Hara Allison EDITORS Elin Adcock Anne Lunceford Capellen BeneathYourBeautiful.org FRONT COVER MODEL Nirvana Marie instagram.com/nirvanamarie facebook.com/themightyzebra PHOTOGRAPHER Hara Allison hara.photography instagram.com/hara_allison_photography See page 56 for story. Committed to improving lives through raw and compassionate storytelling. BACK COVER PHOTOGRAPHER Laura Froese paraphrasephoto.com instagram.com/paraphrasephoto Be a guest on Beneath Your Beautiful podcast Submit your art + stories to Beneath Your Beautiful magazine hara@BeneathYourBeautiful .org PHOTOGRAPHY hara.photography DESIGN studioh-creative.com
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my sister-in-law lost her second daughter in utero, at full term. The social worker helping her at the time suggested she might like to have photos of her daughter as mementos, so they called and asked me to come. At 68, I’ve had some difficult days, but that day was definitely one of the hardest days of my life.
nurse in charge of the room mishandled the entire situation, turning it into a deeply traumatic one, for everyone in the room.
My sister-in-law asked me to bring a little dress to the hospital, wanting to prepare her for the photos and for her cremation, so I went looking through the treasures in my basement
picked out one that
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Lynette Huffman Johnson is a Seattle area photographer whose passion is her nonprofit, Soulumination: a network of photographers that, free of charge, photograph families facing life-threatening illnesses.
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been mine as a baby. It was a beautiful, simple little dress, sewn in the Philippines, with silky, flowy material. As the nurse worked to dress Lainie in it, she callously described what was happening with her body as a result of her passing away in utero. She was so graphic, so insensitive as she explained what she was doing, Sally began to keen deeply, wailing in her grief. It was heartbreaking, and completely uncalled for. Counselors were called in, but the damage was done – we were all so traumatized we were scared even to hold her. If that nurse had only wrapped that beautiful baby up and handed her over, we could have, would have held her. But even that small gift was taken away from my sister-in-law.
After, as I stepped out on the sidewalk, trying to make sense of the experience, the thought just came into my head, “If I could do this for my niece, I could do it for anybody.” I did not think, “Oh, I wanna start an organization.” I just knew this was something I was supposed to do. Called to do.
Coming up with the idea and then offering the service didn’t mean that I was prepared, not at all. I knew I couldn’t think, I would just have to go. To volunteer is to step into what may be the hardest place you could imagine, and I think that feeling just shows us our own humanity. A mentor from Children’s Hospital, a man I highly admire, said to me, “You know, the reason you don’t sob, and cry is that it’s not your loss and it would be almost offensive to the family. You don’t know them, but you can appreciate their loss.” Tears will come to my eyes. And then when I’m alone, going there and coming back, the emotions are just running off of me.
Just last week I was finally able to go back to the hospital for the first time after COVID. I hadn’t been able to go for a few years because of my own diagnosis of lymphoma, with a really compromised immune system. My doctor finally told me I’m doing so well, I would be safe going again. I got a call in the middle of the night, and that same feeling came over me again, even after all the sessions I’ve done.
For the first few years, it was just me doing this. And then my own mom died, so we built up an organization around the work I was doing because my own grief would not let me go into those rooms right then.
You’re stepping into something that most people will never see in their lives. And to see that raw grief, and combined with the beauty of the situation at times, just how beautiful the children are, how beautiful the love is that surrounds them. It’s incredibly hard, but there is some gift in it so that we can move forward with our own lives, and realize, that network of love doesn’t go away.
When I started this organization, I didn’t have my diagnosis yet. I am one of the healthier, and still probably one of the physically stronger older women you’ll meet. I’m a go-getter. But then cancer came, and I screamed and yelled and hung up on my doctor when she told me. And that was in 2012. And I don’t wanna give cancer credit for anything, but I have a scar that I can show young cancer patients and they’ll connect with me in a second. We can talk about what it feels like to flush your line and, sometimes I’ve been bald on shoots as my treatment has continued over those years. It’s not stopped anything. That and the diagnosis of cancer certainly gives
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heightened that appreciation, but it also connected me strongly, especially to young people who have blood cancer.
In the beginning, when I was the only one doing it, there was a lot of PR about it on all the local TV stations - it was in People Magazine, I was on the Today Show - people would recognize me on the street and say, “Oh, well I couldn’t do what you do.” Which just tells me, Okay, boy, did somebody ever need to start this!” Because, you know what? You CAN do whatever is RIGHT to do, no matter how difficult. Anybody can do this. Do I want to see the losses? Do I want to see the hardships? No, but what we are
giving them is a profound beauty in every
After the 20 years of doing this, it brings you to a place of understanding and appreciating what you can do and what others throughout history always have done. I’ve been asked to speak to younger women about what I do, and I try to tell people you can do in life whatever you want to do. I mean, you have to have talent, and you have to do it well, but it is amazing what it shows you.
There’s so much that I have seen and done now for so many years and I keep thinking, “There’s no way I’m gonna like the next family as much. There’s no way it’s gonna move me.“ But it really teaches you
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the beauty of humanity. How broad that is. How it’s always there. There’s just so much to be learned in this situation and there’s so many ways to not let it destroy your peace. You know, we’re all gonna die.
I’ve been in a hospital in the middle of the night with young mothers and no one else is there. And then I’ve been, I’ll never forget this one, the couple had so much family there out in the waiting area at the hospital. I’ve never seen anything like it, and there was such a range of ages. They all wanted to hold her; to see her and be with this baby girl. It just went on and on. Everybody got a couple minutes. And I got photos for all the family members that wanted to be with her and hold her but there still was always that underlying agony.
I really do appreciate what I get to do. I have been with people from around the world because of the care at Seattle Children’s, and we have a pretty diverse population, and they’ll also fly in from other countries. And that has been unbelievably valuable to me in my own life.
As I’ve gotten older, I realize if I open myself up to all human processes of how others view religion, in my heart, I KNOW, the one is not better than the other. It’s odd, but I take a little offense when people wanna say, “Well I know you’re Christian…”
Another beautiful thing is I’ve been given a chance to see how individuals in different cultures and different religions deal with death, because it’s not particularly different. It’s just learning to respect every human life.
When you’re faced with your own mortality, regularly, with a condition that has never been cured, it opens you up to the world. I wanna be alive to be with my grandsons and my daughters.
It has changed my life: my appreciation is broader.
We make and sell wreaths that to benefit Soulumination at holiday time and last year I looked over and there is a mother of a twin who I had photographed when she lost her son, maybe 12 years ago, maybe more. And that immediate connection when I saw her… there is just this power that came between us.
She left me beautiful books by a local florist and I had never read or seen them. It moved me so much. Even after all these years, that she signed her name, her husband’s, her other two sons, and she signed his name.
In a shaky voice I told her how much it meant to me and she said, “I rarely do that. But for you, I would, because I knew you would honor it.”
Grief is being changed by the work of our volunteer photographers and by Soulumination. It’s opening our hearts to grief, not hiding away.
People have said to me, “Oh, I have a friend who lost a baby, but I never say their name ’cause I don’t wanna remind them.” And you know what? I’d get a little bold and say, “Oh really? You think are reminding them?” As if that grief isn’t always there for them.
It does change the face of grief. It allows the freedom to reminisce, to talk about their child or loved one and let it be part of their life instead of hiding it.
We hand-make these little accordion books and every single person that is photographed with the child, who loves that child, will get their own. Sometimes we make just 1. Once, I photographed a family where the adult was dying, and he had not only his own child and wife there,
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but all of his nieces and nephews, and so we probably made 20 of ’em.
We lovingly present the photos in something handmade and we have seen children take them and put ’em over their faces or over their hearts.
The families see and feel that many hands come together to support and understand the value of their loved one.
When I started it, I knew right away that I wanted it to go on after I died. And with a diagnosis of a cancer that’s never been cured, it was so important to me. And it will go on. I’m not a trained photographer: I just love photography and do it well. I’ve had a beautiful life in it. However my life ends, I know that the legacy of legacy photos that I will leave behind. To know that something will go on after, is a way of having kind of an eternal life. And I don’t need any more
For more info: soulumination.org
To learn more about Lynette, listen to Beneath Your Beautiful podcast Episode 92
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PHOTOGRAPHER Laura Froese paraphrasephoto.com instagram.com/paraphrasephoto
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Laura Froese is lifestyle family and wedding photographer living on the west coast of Canada. She also is part of the admin team and an instructor with Hello Storyteller covering a variety of topics from offcamera flash, to editing, to time management.
Photography started as a hobby for her back in 2012 but has grown into a full-time business over the years. Her husband also freelances in the arts as one of the creators, lead editors, and talents on the Youtube channel, Playon Tabletop, and they have three little boys ages 4, 5, and 6 who are the heart and soul of her photography.
Laura picked up a camera before she had children, but in the back of her mind, she knew she wanted to hone her skills to capture our family one day. She’d always been a minimalist and that transferred to her photography in that she would rather have one or two beautiful images to mark an occasion than a dozen mediocre ones. This naturally lent itself to more of a lifestyle approach where she found herself thinking, “How do I want to create a lasting image for this memory?” vs. documenting what unfolded before her.
For example, one evening she saw her son crawl down the dark hall and plop himself in a pocket of light from the bathroom to watch his older brothers brush their teeth. She immediately bookmarked that idea in her brain and recreated it the next day with a slightly cuter outfit and more controlled lighting. When they were moving, she knew she wanted to document her youngest in the tub that he was accidentally born in, so, again, she set up a light, cleared the scene of toys to really draw the focus on him, and called his name to get him to peek over the edge of the tub.
Potty training was literally the single-most horrific memory of those early years for Laura, and she remembers the day they started, catching a glimpse of the sunrise making a perfect rectangle on their wall. She woke her son a few minutes early and called him out to stand in the light thinking, “Here we go again. For real this time.”
So many of her photos have some core memory behind them while others are more opportunistic like seeing a pattern of light on the stairs and leaving a bit of donut right in the spot and hoping her son would stop.
She’s done a number of lazy “365 projects” where she aimed to assign a photo to every day of the year (with lots of cheating of course!). This motivated her to keep her camera out most of the time to create and capture her family’s growth over the years. She wants to make sure she prints an album once a year for her children to look through as well. She reminds herself “What will matter when you're 80?” She knows she’ll want these memories. She’ll want these books. So she keeps shooting.
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Magie Cook is a CEO, business coach, author and a world-renowned speaker. She was awarded “Woman of the Year” by the Hollywood Dreams International Film Festival, which plans to produce a feature film based on her life story. She was named Young Entrepreneur of the Year by the Small Business Administration. She has authored two books, Mindful Success – How To Use Your Mind To Transform Your Life and The 3 Rs of Highly Successful People – Resilience, Relentless, and Resourcefulness
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by Anne Lunceford Capellen
Magdalena De La Cruz Cook Garcia, also known as Magie, was raised in a Mexican orphanage with 68 “brothers and sisters” often to the point of starving and frequently neglected, abused, and receiving punishment as an example to the other children, she was determined to find a way out.
Referring to her parents as caregivers, Magie and her seven biological siblings didn’t feel they had a mom and dad. “I don’t know what it’s like,” Magie says. “They cared not only for us, but for everybody else. They were so afraid that if they paid too much attention to us that the other kids would escape or cause more problems.” And so Magie and her siblings took the brunt of the discipline and mistreatment. “We never really had one-on-one parental attention. We went through a lot of abuse and suffering. Even if we didn’t do anything in many, many, many cases, we were severely punished. And that was hard. I knew that we just had to endure.”
As a way to escape her circumstances, Magie, though only 5'2", found she excelled in basketball and was recruited by the Mexican National Team. She trained hard but one day was playing American football with the boys and one of her brothers threw a pass which she caught in the air. As she did, her body rotated and her shoulder hit the ground. “I got up and it felt like I’d
been punched in my gut.”
Magie’s caregiver, who was a doctor, pulled her shoulders back and said, “You just broke your collarbone. Your dreams are over.”
“I clenched my fists. ‘No, no! If this happened, that means there’s something’s better.’ That’s what I said to myself and refused to believe anything else.”
Months later, after her dream to play was dashed, the orphange went on a tour of the United States to raise funds. By invitation, their travels took them around the country, and one day, to St. Agnes Catholic School in West Virginia. Spotting a basketball court on the school grounds, Magie and her brother ran to play. It so happened that the coach from the University of Charleston was at the school and watched her play.
The coach offered Magie a scholarship. “That’s how I came here, immigrating into the U.S., some would say ‘by accident,’ at age 18.” But Magie believes there are no accidents. She explains, “If I had listened to my caregiver and not played that day,
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my story would be very different.” She has lived in the United States ever since.
Magie studied architecture in Mexico, and then graduated from the University of Charleston with a degree in interior design. There were only one or two firms in West Virginia and, as hard as Magie tried, she could not find work. She became homeless, sleeping in her station wagon until the engine blew up driving up a hill. At that point, she started carrying her bags from the mountains into the streets and was homeless for another two or three months, when someone from the University recognized her, and she was given a place to stay.
While in college, Magie made fresh pica de gallo salsa and shared it with classmates. They told her teachers and as a result, it became very well known.
It was so delicious that Magie was encouraged by friends to enter a salsa contest for the State of West Virginia. Out of 15 competitors Magie was the only one to enter a fresh pica de gallo and won by unanimous vote. “Someone at the competition saw me and gifted me 800 bucks to start this business. Someone I didn’t even know!
“I’d just come out of homelessness but everybody was asking, ‘Where do you sell this stuff?’ And I’m like, I don’t know.”
Magie compiled a list of stores to contact. The first 90 stores she called told her no. And one of her best friends
suggested she give up, quit, get a real job. With so many doubters, Magie was terrified. But still, she believed, and she moved forward.
“I turned that list upside down. And now, at the top, was the largest potential client: Whole Foods.” She nervously dialed the number. “Hey, my name is Magdalena De La Cruz Cook Garcia. I have an awesome fresh salsa. I think you guys would love it.” And then she hung up. “Oh my God! I’m so glad they didn’t answer!” Magie thought and breathed a huge sigh of relief.
The next day her phone rang and the person on the other end of the line was Eric, the main guy for the entire midAtlantic region of Whole Foods.
The meeting was set for 9am the next morning in Maryland so Magie headed to the kitchen, prepared her salsa, packed it up, and got on the road, just making it to the appointment on time.
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of men sitting at a U-shaped table. I have these salsa boxes with chips on top, wearing my little heels and my dress, and I’m like, OH MY GOD!
I put the product on the table and they opened it and started eating. At one point Eric stood up and said, ‘We love your products! When can we have them?’’
Eric asked for 10,000 pounds of salsa. Back then, Magie was only making 250 pounds a week and had just one person helping her. It took an entire week to cut the 10,000 pounds of product and then Magie had a week to deliver.
Resilient and resolute as always, she first got her truck driver’s license. And then, after much searching, at a junkyard she found a large truck with refrigeration the day before her deadline.
“I remember getting into this truck and, you know, testing everything. It had a clutch, a stick shift, but you couldn’t see the numbers for the gears. And the seat wouldn’t adjust because it was so rusty! When I drove over any kind of bump you heard: squeak, squeak, squeak!”
Magie loaded the truck from front to back, top to bottom. She climbed in and started driving. She was doing it! But at the very first light there was a hill and her butt slid all the way to the back of the seat. She tried pulling herself forward using the steering wheel and the stick shift, but she was too short to reach the pedals!
situation where something really impactful happens and you immediately start sweating. That was me at that moment. I was thinking, ‘I’m going to roll back and hit the car behind me’ because I couldn’t get the truck out of first!”
Finally able to pull to the side of the road, she got out, paced around and wondered what she could do. And there it was: a block of wood lying in the road.
Magie remembered the duct tape she’d used to secure the right mirror and so she ran to the truck, grabbed the tape and secured the piece of wood to her shoe. Now, she had just enough height to reach the pedals and engage the clutch.
Every time she had to get gas – and that was a lot because there was a leak in the tank – she had to walk with the wood block taped to her shoe. It made a clanking sound and she was also lopsided, with one foot taller than the other, and people were definitely staring. “At one point I just owned it.” Nothing could stop Magie.
“When I arrived at Whole Foods, I was so excited and so happy! I kept screaming, ‘YES! I MADE IT!’ It was one of the most exhilarating moments because I knew that,
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if I had accomplished this, everything else was just going to get easier.”
That year, Maggie’s Fresh Salsa exploded to 1.9 million dollars. Because her product was in Whole Foods, all of the supermarkets that had declined her salsa were now demanding it.
“I had hope. I knew it would happen. I just didn’t know how. I was just taking a step at a time, every single day. And I think that’s what we need to do when we have uncertainty. It was the same hope that I had coming out of the orphanage.
“I’m going to be very honest with you and vulnerable, too,” Magie admits. “I felt like quitting many times because it was just so hard. No one believed in me. But I had to pull everything within me to believe in
myself. I knew that I had something and I was just going to give it a go.”
In 2015, Maggie’s All-Natural Fresh Salsas & Dips sold to Campbell’s Soup for $231 million.
Armed with resources and a huge heart for helping others, Magie returned to Mexico and worked with her orphanage. She rescued 31 orphaned children from a drug cartel. She established a foundation to help kids who were being held captive in the world of human sex trafficking.
“I love what I do!” Magie beams. “I want everybody to remember to ask themselves this question every single morning: ‘Why am I here?’ When we do that, we are being of the greatest service, not only to ourselves, but to the world.” «
To learn more about Magie, listen to Beneath Your Beautiful podcast Episode 97
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PHOTOGRAPHER Gemma R.
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written + transcribed by Elin Adcock
Calvin Smith, 14, is the oldest of three children and one of only 100 people in the US living with Metatropic Dysplasia, a very rare form of dwarfism. He and his mother have spent much of his young life working to find treatments and manage the disease that not only challenge his mobility, but also causes a lot of foot, leg and back pain.
During his first major surgery in October 2019, Calvin underwent a correction for spinal stenosis that was compressing his spinal cord and threatening his future ability to walk.
An engaging, intelligent high school student in Spokane, Washington, Calvin enjoys science, video games and baseball. He is a member of the tech crew for Christian Youth Theatre at their church, plays the clarinet in his school band,
and is a member of both the Podcast Club and Future Business Leaders of America. Most recently, Calvin has discovered a talent and passion for doing voiceover work. With a rich and powerful tone, Calvin’s voice offers a versatile range of personality, from serious to playful. From his small home studio, Calvin hopes to build a lifelong business out of his new-found talent.
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My name is Calvin Smith. I’m 14 and I go to Ridgeline High School. And I do voiceover.
It started about two years ago when my mom came up to me said, “Hey, I found this class. Do you wanna take it?” It was a voiceover class and I did it and now we’re here. Really, though, I’m just flying by the seat of my pants.
About my dwarfism: achondroplasia is the most common form of dwarfism but there are over 200 unique diagnosis that include short stature. I have Metatropic Dysplasia, a rare disease that affects only about 100 people in the US. It affects a lot more than growth. Yes, I am shorter than average, but at the same time, I have bone and joint problems that cause a lot of pain.
It was in kindergarten or first grade that I realized I was different. I noticed I was a little shorter than my classmates. For the first twelve years of my life the disease was pretty well managed, but recently it’s starting to get a bit worse. But I mean, that’s kinda what is expected. Right now, my ability to walk, my legs and my joints are starting to get worse. My legs are harder to bend, it’s harder to bend over or use my arms. I mostly just wanna sit in bed all day.
A gradual decline is what is expected with my disease. There are some things that we can do to try and improve things, otherwise, it’s supposed to be a gradual decline. I mean, it’s not like I can change it, so I just deal with it. Sometimes I feel worse than other times, and don’t feel like doing anything, but at the same time it’s like, well, I guess I just might as well.
I haven’t had to deal with too much bullying. A lot of people have been really understanding. Right now, I am in 9th
grade, a freshman in high school, and everybody’s really nice to me. But at the same time, I think it was first or second grade when some kids were unkind. But now I have tons of friends. Even if I’m not like that close to people, they still greet me when they pass me in the hallway. Like, “Hey Calvin, how you doing?” I’m like, “I’m doing good.”
Some people automatically assume things about me, like, because I’m in a wheelchair I am mentally disabled. Sometimes you do find people with this disease are developmentally challenged. But, in my case, I am pretty intelligent, and taking AP classes. If I meet somebody new, they don’t know these things about me. And so yeah, it’s not cool that these assumptions are made.
If there was anything I could tell the public about dwarfism, it’s that every–bodys different.
This summer there was a national conference for Little People of America and a lot of us were leaving the hotel for activities off campus. I spent some time out in my wheelchair, and I don’t remember getting any weird looks from people, but I’m sure it happened because you don’t often see a 3-foot adult.
There’s been a lot on TV about little people that have made it more familiar to people so I think that’s really good. And also, I think when people look, it’s just because something’s different. Not necessarily because they’re thinking anything bad. So those are things that we just as humans do accidentally, you know?
That’s true of everything that’s different. We look, but nobody’s normal – whatever normal is anyway. «
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In this series, I share the daily life of Chuck Deely, a well-known American street musician who played in the city center and Central Station of The Hague until his death in January 2017.
The infinite memories of his daily life, his interactions with people, his expression and emotions and the passion for his music come alive in an endless stream. Deely sang and played guitar for hours, no matter the weather or season. This made him a recognizable figure for everyone who walked by in the shopping street Grote Marktstraat. His music style can be characterized as rock music from the 60s and 70s and his voice reminded many people of the musician Neil Young. A few times, he got the chance to play with the Residence Orchestra. He also published 22 music CDs which he sold for 10 euros to passers-by.
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SoNa Sahakian (1996) is a visual artist based in The Hague, the Netherlands. She graduated from the department of Fine Arts at the Royal Academy of the Arts, The Hague. Her works consist of paintings, drawings, collages, photographs, installations and film. In recent years she has participated in various group exhibitions and projects.
SoNa wants to inspire people to make an inner journey by feeling and discovering for themselves what the treasury of their existence is.
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PHOTOGRAPHER SoNa Sahakian sonasahakian.com instagram.com/sonyl_artartart7
by Marjorie Aunos rollfwd.com
In November 2021, I was crowned Inspirational Speaker of the Year by North America’s largest speaking competition. I had spent years wallowing in pain and sorrow, and the win came not only as a surprise but was welcomed. To me, the win reflected all my efforts and introspection of the previous year and was the culmination of a very long journey towards becoming more accepting of myself and my life as a disabled parent. Interestingly, it also came on the eve of the 10th anniversary of the car accident that rendered me paraplegic and turned me instantly into a Mom on Wheels.
I didn’t always want to be a mom, but as my 30th birthday approached, I felt the yearn to have a child of my own. As my mom had me at 30, and my aunt had my cousin at 30, thirty was quite symbolic. The combination of turning 30 and seeing my cousin fight to live to be with her children, against a cancer that had originally given her only six weeks to live, triggered my desire to be mom. Watching her, I knew motherhood would be the one human experience that would make me both ultra-vulnerable and super strong all at once, and I was inspired to experience that for myself.
But to enter the path to motherhood, I first needed to break my heart. I was in a relationship with a man I loved like no
other. He was my everything, the oxygen in the air I breathed, but he didn’t want to have another child. The choice was excruciating, but I understood I was choosing between him or me. I chose me.
Becoming a single-mom-by-choice was complex, with multiple reasons to that choice but one sticks out more: I didn’t want to live a lie. I didn’t want to pretend to love someone in order to have a child. If I was going to do this, I needed to stay honest with myself, and true to my intentions.
After researching fertility clinics and what the process would look like, I showed up to my first appointment with my cousin in tow. She knew what this meant to me and wanted to be part of it all. I then embarked on the roller coaster ride of
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insemination. Following a cancer scare of my own, and after seven unsuccessful tries I finally became pregnant. That Christmas in 2011 was filled with a possible future that looked brighter than it had in years: my cousin was as healthy as she could be and I was expecting a baby, making all the heartaches of the past three years somewhat less stinging.
If I had the ability to suspend time, I would probably choose to suspend it right at that blissful moment. The storm of the following year will forever be ingrained in my memory - starting with the news that my cousin’s brain tumors were taking over. We knew what was looming for her when my son was born, yet we celebrated life upon his arrival. I was happy he got to meet her, and she him, even if ever so brief. She died two and half months after he was born, and I found myself thrust into the broken-hearted reality of life without her.
Our first Christmas day together was spent at the Emergency Room of a local Children’s Hospital. My son and I had been sick for a few days, and I noticed he was not recuperating like he should have. During that visit I saw fireworks on a screen - my son’s heart was pumping harder than it should have. It turned out that he, too, had a broken heart, diagnosed with a septalventricular defect – a hole in the heart. He went through open heart surgery at only six months of age, and carries a long scar on his sternum as proof of his resilience and the skills and care of numerous
We spent a year of firsts after his operation: first time walking, first day in daycare, first tooth missing, first night away at Mamie & Papi’s, first broken leg, and first week with our family all together celebrating Christmas and welcoming the New Year! We spent a lovely, crazy week of fun and games with everyone, but I had to return to work for a couple of days. My parents and sister offered to care for Thomas until my return to finish out the holiday week. On a country road, on my way to work that fateful morning, I remember noticing how happy I was - life was good. I remember too, upon feeling my car sliding on black ice, my first thought was, “Today, is a good day to die.” The impact severed my spinal cord and shattered the life I knew and had worked so hard to build for myself and my son. I know I was meant to die that day, but my plea to stay - for my son – was answered. I hadn’t realised that asking to stay would mean starting over.
I tried to “fake it, until I made it.” I really did. For years. But I couldn’t shake the injustice, the unfairness of it all. I was the helper, the one who took care of everyone around her. I had become a psychologist, an advocate, a researcher and a case manager, becoming an expert in the field of “parenting while disabled” so I could
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help make the world around me a little better, a little brighter. And I felt that by rights, I should have been spared. Or at least, I felt I deserved the answer to the question, “Why me?” But those “Why?” questions are only a series of rabbit-holes: the answers always fleeting and never truly satisfying.
But as I myself became a person with a disability, I found myself losing my passion for the work, as well as my voice. I couldn’t
speak of all the injustices I knew were happening, because doing so meant I had to look at what could also happen to me. I had seen dozens of disabled mothers lose custody of their children, sometimes with very little to substantiate the allegations. Apparently, watching someone with a disability take care of a child is frightening to people. Harsh decisions are made out of fear, decisions that are not necessarily in the best interest of the family. I was
She is known as the Mom on Wheels and she tirelessly champions for parents with disabilities all the while raising others up, as she did when she invited 13 of us to co-author a book she had won as part of a prize package as the 2021 Grand Slam Inspirational Speaker of the Year.
The book came on the tails of her own book, Mom on Wheels, which so courageously chronicled her journey of becoming paralyzed and through recovery.
Marjorie is an incredible woman, advocate, and friend who is leaving a mark in the disability space.
NOMINATED BY MARIA-ELENA
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Marjorie Aunos is one of the most selfless changemakers I know.
To nominate someone who has made a difference in your life or your community, please send an email to: hara @ BeneathYourBeautiful org
desperately afraid of losing my son, as he was the one thing holding me together. The only one I would get up for, every morning. So, I stayed quiet. And that didn’t help.
I fell into an abyss five years after my accident. Or rather, I was there all along but had just pretended I wasn’t. I finally stopped pretending, as I just couldn’t hold it together any longer. Me, who had wanted to live by my truth, was lying to everyone around – smiling, participating, all the while knowing I didn’t have a place of my own in the world. Believing I was a burden to everyone else around. I had burned myself out and was ashamed by it.
To get back to my healthiest self, I quit work and went to therapy – every single week, sometimes twice per week. With Thomas in school, I would spend my days writing anecdotes of a mom on wheels. I would also revisit stories I had written while at the hospital or in rehab. When Thomas was home, my focus was on taking care of him. Able to do nothing else, this was all I did, day in and day out.
Struggling and stuck in a forever circling loop, my life felt scrapped. I couldn’t recover and I thought if only I could find a middle ground, a place where I could do a bit more than just survive. That glimmer of hope was lit by two things: I was introduced to positive psychology and I had the chance to share my accident story in one of Speaker Slam’s Inspirational Speaking Competitions. A
new spark was lit, and I began speaking more and more. For each new competition
I entered, I dove deeper into the stories I told about my life. Positive Psychology gave me the vocabulary and Speaker Slam the opportunity to share and be seen. In diving deeper, I got to reflect, refine, and recalibrate. Modifying ever-so-slightly my narrative about how I survived and lived through those challenges led me from a victim-focused stance to a survivorbad-ass stance. As I shared my stories, I also listened to my competitors’ stories of resilience. Finding this community of beautifully strong people made me realise I was not alone. x
Life is hard. And beautiful. There is space for both realities, and one makes you taste the other a little more. Nothing is permanent. Everything changes at one point or another, in some way or another. Only change is true. But in reflecting back on my cousin’s journey, I realised she had given me the blueprints to my own recovery. She had shown me to savor every little moment I could, to surround myself with people who lift me up and make the journey a funnier one! She taught me to savor the moments and hold them dear in your heart and mind. Those moments are where you will find the strength to live through your heartaches. «
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by Vanessa Rose-Juncaj, RN
As a traveling COVID ICU nurse, I’ve done three different waves in three different states. The first wave left me in shock; the second broke my heart; and the third offended me. Each wave was so drastically different than the previous one and brought about different challenges.
For the first, we didn’t have time to think or feel. We just had to make it all work, somehow, despite running low on PPE (personal protective equipment) and the most basic supplies. Our patients came to the unit so sick and required a tremendous amount of medical support. Many wouldn’t even make it to see the sun rise because they were already so unstable. It was like working in a pressure cooker for over a year. I had never experienced this level of intensity before, and I’ll never forget it. I was left in a a state of shock.
By the second wave, we had learned a lot about COVID and how to treat it, but that didn’t make this easier. Actually, this one was personally the worst for me. We tried everything we could to avoid intubating, because the
MODEL Vanessa Rose-Juncaj, RN instagram.com/musings_of_a_nightnurse
PHOTOGRAPHER Amanda Keeley instagram.com/dreamily.portraits
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Also, people knew. They knew they were sick and that death was a potential. They’d beg you to save them. They’d cry. They’d ask you to hold their hand while they died. They’d ask you to write letters on their behalf to their loved ones. They just knew they weren’t going to make it out of the ICU. The second wave still weighs the heaviest on me.
By the last wave, we had a significantly better grasp on how to treat COVID. But we still lost people – really, really young people, too.
Even though the outcomes were better, I still felt so distraught - offended even. We had done so much work and another wave meant more lives lost. I just couldn’t wrap my head around it.
There isn’t any aspect of my life that COVID hasn’t touched. I am forever changed by this pandemic. Several years in and I still haven’t found peace or reconciled with the loss of dozens of patients. The sorrow is something that’ll never leave me.
Though there’s nothing terribly unique about my story, I feel compelled to share because I fear for the future of nursing. I believe there’s a widely unseen epidemic within healthcare. Nurses are burned out and leaving the profession at an unprecedented rate. I’ve yet to step foot into a single facility where there isn’t traces of fatigue in my coworkers voices.
Depression, addiction, anxiety, and grief are rampant right now. PTSD can and does occur in healthcare. We need to acknowledge the trauma.
I wasn’t going to write this. Really. What’s there to even say anymore? Nobody wants to hear about COVID. They’re over it. But my fellow nurses said, “You’ve got to write it. People need to hear this and hear how it’s still affecting us. Give us a voice.” If anything, this pandemic showed us that we need our nurses. «
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by Nirvana Marie
I’ve been through a lot in my 37 years — a lot more than one would think looking at me. I have become a master at hiding my pain from the world. Modeling has always been a way for me to work through my emotions, fears and dreams. Creating images that alluded to my suffering was a way to help me process what I was going through, but has also been a way of describing who I am to the world, and to myself.
Growing up, I always felt that something was wrong with me. Like really wrong, physically, but it was incredibly difficult for others to understand when I described what I was experiencing. I appeared to be normal and healthy, but was experiencing chronic pain. When I tried to show my vulnerability, it was perceived as attention-seeking. There was even a point in my life where I convinced myself that I was making it up! I should be fine… Why didn’t I feel fine?!
I had headaches and stomach problems even before I started kindergarten. At 12, the symptoms went into hyperdrive. Chronic fatigue, muscular pain and some of my joints started to snap, crackle and pop. I wasn’t allowed to go to gym class because I was getting dizzy after strenuous activities and even passed out a few times. Carrying a backpack full of books was too much weight for my neck and shoulders, so I had to have a second set issued for my classes, keeping one set at home.
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MODEL Nirvana Marie instagram.com/nirvanamarie facebook.com/themightyzebra
PHOTOGRAPHER Hara Allison hara.photography instagram.com/hara_allison_photography
The social aspects of school were difficult. My symptoms couldn’t be explained, and some of my classmates were incredibly cruel. I once intercepted a note that said I was faking things to get attention. I felt like I couldn’t win. I became very depressed, even suicidal. I wanted so much to just be a normal kid.
I had a range of chronic symptoms that were unexplainable and often debilitating. At 15, when my body shut down, I was hospitalized. I remember walking out of math class after taking a test, and a friend catching me as I passed out. I woke up in the health room surrounded by EMT’s and was rushed to the hospital because my blood pressure had bottomed out. I was out of school for a month while I went to rehabilitation, relearning to walk and speak properly. I could barely walk and spoke like a toddler – a terrible feeling having been an honors student.
With “fibromyalgia” as my new diagnosis, I graduated high school and went on with my life, but continued to suffer debilitating symptoms. In my midtwenties, I had extreme difficulty getting my left hip to stay in place and could barely put weight on it. An x-ray was ordered and the doctors thought they found a cyst that required additional testing. An MRI instead revealed a tumor wrapped up in my spinal cord.
Things moved quickly and I met with a surgeon a few weeks after the tumor was found. There was compression on the spinal cord, risking permanent damage, and immediate surgery was recommended.
It was the day after my 26th birthday
when the 14-hour surgery took place. Surgeons were able to remove much of the tumor, but unfortunately could not remove all of it without completely paralyzing me.
I was on so much medication following the surgery that a solid week went by before I came back into full consciousness and realized I was unable to feel anything from my waist down. I really was unprepared – I had no idea that I would lose feeling in my legs, and be unable to drive or sit upright.
The healing process was exhausting and I was kept in inpatient rehab for a month. It took a year for me to regain feeling to my knees and another year for the feeling to reach my ankles. My feet continued to be stubbornly unresponsive. I thought I would incrementally get better, but I had additional complications for years after the surgery and continued to have severe and unexplainable symptoms that were not tumor-related.
As life went on and I continued to suffer, I could feel my dreams slowly slipping away.
A chance encounter, however, with someone I met at (of all places) a music festival gave me the answers I’d been seeking for 32 years and led me to a correct diagnosis. My little blue fairy godmother was my neighbor at the Shambhala Music Festival, where we met in the accessible camping area. Upon hearing my symptoms, she asked if she could pinch my skin, made some observations about how “bouncy” it was, and suggested I look into Ehler'sDanlos Syndrome.
Suddenly my reality made so much sense.
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Finally, I found symptoms that matched my lived experience! I had spent decades going to doctors and being told “some kids just have back pain,” “it's all in your head” or the catch-all “fibromyalgia” diagnosis.
There’s a saying in the medical community: “When you hear hoofbeats, think of horses, not zebras.” Think of common ailments, not uncommon. But zebras are real and like a zebra's stripes,
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no two people with EDS experience all the same symptoms – even within the same family. This makes it incredibly difficult for patients to get a diagnosis.
Only a geneticist can diagnose EDS, but there were none in my home state of Washington that had any experience. So I travelled to Oregon where a geneticist diagnosed me with Hypermobile Ehler'sDanlos Syndrome (a connective tissue disorder) and a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). Within minutes of arriving for my appointment, this doctor knew that I was experiencing dysautonomia based on how my pupils reacted to the lighting in his office, and my symptoms, coupled with the results of the Beighton hypermobility test, made HEDS an easy diagnosis for him.
Because of the EDS, my joints naturally hyperextend, and my muscles must work overtime just to keep my joints together. This has resulted in “dystonia” – uncontrollable muscle spasms and twitching. To counter this I get Botox injections in my neck, shoulders, down my spine, throughout my back, SI joints and through my legs every 3 months. These injections are truly life-changing for me, even though the recovery period is always a bit brutal. My joints and bones can shift easily, so I use a foam roller multiple times a day to adjust things back into place.
The POTS affects my autonomic nervous system – just standing can make my heart rate jump, blood pressure drop and blood to pool in my feet. I experience ridiculous brain fog at times, and it’s difficult for
my body to regulate temperature. My feet are often freezing while my upper body is overheating. Dizziness and nausea are frequent. Some days are more “normal” for me, and other times, symptoms flare up.
There is no cure for either of these conditions, but they can be managed with medications and a lot of self-care. I’m still working hard in physical therapy to strengthen and reconnect nerve pathways and I’m finally starting to get glimpses of feeling in my feet.
In addition to the physical work, it has taken a lot of mental work to get to a place of self-acceptance. I’ve grieved my past self and the life I thought I would have, and now I am able to reimagine my future.
I have good and bad days, but I do my best to push through and live life to the fullest. To help focus my own efforts, as well as to inform others with this disease, I’ve started a Facebook page called “The Mighty Zebra,” in honor of rare medical conditions.
I used to describe myself as “beautifully broken,” but I know now I’m not broken. I just have a little “cripple swag” and there is nothing wrong with that! I have accomplished so much, and now can even drive a car with hand controls! My experiences have given me strength and made me who I am today. I am an invisibleillness warrior, taking elements of who I once was and embracing the parts that I used to hide. Now, I am much kinder to myself. I keep moving forward. Baby steps. One day at a time.
And just so you know, a group of zebras is called a dazzle - shine on! «
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To learn more about Nirvana, listen to Beneath Your Beautiful podcast Episode 96
by Elin Adcock
Larry Adcock, 57, was diagnosed in February 2022 with Frontotemporal Degeneration, a form of dementia that can affect people as early as their twenties, or as late as their 80s. He received a secondary diagnosis of ALS, Lou Gehrig’s disease, in September 2022. His disease progressed quickly, with his family seeing physical and cognitive changes weekly, sometimes daily.
Larry passed away at his home on December 7, 2022. This is a story of enduring love, one that will transcend death.
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Photo by Kate Jenkins
We met as children – I was eight and he was ten – at Eglin Airforce Base. It was 1976, the bi-centennial, and I remember all the fire hydrants on base had been painted red, white and blue to celebrate. Our fathers worked together in the Munitions Squadron, and we lived in the same quad of townhomes. Our parents played Pinochle on the weekends, so us kids hung out together a lot, Larry’s older brother, Chuck, antagonizing Larry and us three girls, or maybe the other way around, I don’t know.
There was always this otherworldly quality to Larry. As a young boy, he was funny and fun-loving, gregarious, fearless and adventurous. But he also had this quiet intimacy about him – he had a way of tuning into a person, getting right up close to their soul, and before they even knew what hit them, they were opening their heart to his and calling him friend. I remember, too, his eyes always seemed to be a different color, sometimes gray, sometimes a deep, almost violet blue, sometimes a hazel green.
He asked me to be his girlfriend one day at school with a note, which made me blush the second I opened it:
Roses are red, violets are blue, sugar is sweet and so are you.
Will you be my girlfriend?
My 8-year-old brain really didn’t know what to do, so I blurted out “I don’t know, I have to think about it!” and then I ran for the bus as fast as I could.
Later that night, about the time my mom was making dinner, I picked up the
kitchen phone to call him. I was so scared, my heart pounding out of my chest. “Yes.” I said when he came to the phone. “Yes, what?” He asked. (My mom was staring at me with intense curiosity) “The NOTE…” “Oh, yeah! Super! Well, see you tomorrow in school!” The deal sealed, we were from that point on, “boyfriend and girlfriend.”
This sweet relationship lasted throughout our post at Eglin and beyond, after our fathers got new orders and our families went to different duty stations. Our families never lost touch, visiting when we could, sending Christmas cards and the like. Each time Larry and I saw each other was this new rediscovery, and we marveled at the way each of us was changing. One visit I would be taller, the next Larry would be taller, and our souls just fit right back together they way they always had.
As we got older, we both explored other relationships, one or the other always with a boyfriend or girlfriend, but never anything as close as what we felt for one another. But our timing was never right, and Larry and I grew apart. I eventually married another, and Larry continued his life as a bachelor, coming close to, but never going through with marriage.
When my first marriage eventually fell apart, serendipity – or rather, my sister –intervened. She was celebrating her 32nd birthday and knew I was having a difficult time with the pain that my marriage was over, so she invited me to get away for a weekend. She also invited Larry, hoping to make her husband a little jealous, because he just wasn’t being very attentive to her. It was the first time we’d seen each other in years - 24 years, to be exact. We all had a GREAT time together, clubbing, hanging
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out in the hot tub, catching up….
It was late, LATE, Saturday night, and everybody else had turned in for the night, but Larry and I weren’t ready to throw in the towel. We stayed up almost all night talking - honest, we were JUST talking - but at one point he stole a kiss - and what a kiss! He says he saw fireworks, I certainly did, but I put on the brakes pretty quickly, still officially married, divorce in progress. I told him I just couldn’t, wouldn’t. It wasn’t right, and I didn’t need to complicate an already complicated situation. So, we kept talking into the night, only giving up the ghost when we were absolutely exhausted. But the flame was ignited, nonetheless. It was four months later before we spoke again.
Unexpectedly, Larry sent me two dozen beautiful roses for Valentine’s Day. He knew it was going to be a lonely one for me and wanted me to feel loved. I called him that night, and the next, and the next, and soon we were talking every night, and sometimes a few times during the day, too. One night, deep into our conversation about my complicated life Larry said, “You know, I think I am just going to move to Texas and court you!” To which I replied, “Larry, if you think you are going to move here and DATE me, you’ve got another
thing coming. I’ve watched my girlfriends divorce and date and their kids went through the ringer. I’m not about to put MY KIDS through something like that. I don’t want you to move here just to DATE me. If you are going to move here, it’s because you want to BE WITH ME, for good.”
I must have fallen right into his trap, for Larry chuckled that particular Larry chuckle and said, “Why, Elin, that almost sounds like a marriage proposal!” I did a whole lot of backpedaling - “Whoa, whoa, whoa, wait a minute, no that’s not at ALL what I meant…” (splutter, splutter…)
Two weeks later, Larry had packed what he could, sold what he couldn’t and moved to Texas. I don’t think he even knew where he was going to be staying, but somehow, he figured it out and took a room with a friend. We were married a year later.
The next fifteen years were absolutely idyllic – Larry took my young sons under his wing as their stepfather, becoming a scout leader, soccer coach, and friend to them. Our own relationship bloomed in a way I had never experienced before – him putting us all first in his life, building us up, praying over us, leading our family on great adventures. The playful spirit of his boyhood remained, and he was so, so pleased to show us how to really enjoy our lives in a way we never had before. We had a son together, and he showered that boy with love and attention. They truly were best buds.
We had many, many close friendships, were active in church, and had a real sense of purpose in life that went beyond the confines of our own relationship. We were both of us greater than the sum of our individual parts, becoming better people than we ever had been before. Larry was
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We stayed up almost all night talking - honest, we were JUST talking - but at one point he stole a kissand what a kiss!
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the kind of guy that people loved and could depend on, helping to make home repairs, rescuing a friend whose car had broken down on the side of the road, being the consummate host at our many, many dinner parties. He was the type of person who made certain that, wherever he was, and whoever he met, he made sure to lift people up and make them feel important. Our lives were so full, and I was so proud to be his partner in life.
After my two oldest grew to adulthood and moved out of the house to start their own lives, Larry and I decided it was time for us to move back to Florida to be closer to family. It was difficult to say goodbye to the life we had built together in Texas, but we were excited to begin again in a new place, seeking out exactly the right home to build the next chapter. The move put us right where we needed to be to help our families through some difficult times – we soon lost my mom, then Larry’s mom, then my sister’s husband and finally, my dad. All those losses took a toll on us emotionally, each of us reeling a little from all the changes. I spent a lot of time traveling back and forth between Northwest Florida and Tampa to help support my family while Larry held down the fort with our son and his dad. Through it all, I felt Larry and I were growing closer and closer to one another, supporting each other through all the heartbreak. Until one day, about two years ago, I noticed something was different.
Larry wasn’t the playful, helpful, loving father and husband anymore. He wasn’t participating in daily life as he used to, no longer coming up with fun ideas for us to do as a family, instead spending more time alone, hanging out in the shop with one
of his cars, just biding his time between waking, working and sleeping. He was coming home at lunchtime to take a nap before slamming down a sandwich and returning to his delivery schedule. He fell asleep on the couch, too, before dinner, not coming to hang out with me in the kitchen as I cooked our evening meal, as he always had done before. He didn’t initiate conversations with us anymore, wasn’t smiling. He seemed depressed and very disconnected from us. I knew something wasn’t right, but didn’t know exactly what it was. I was so confused, this wasn’t the man I had married. He wouldn’t seek help from his doctor, insisting he was “just tired.”
Oct 11, 2021 is the day I was hit with the realization that Larry was ill. He had, over the course of 12-14 months, become almost unrecognizable to me, and in all honesty, I didn’t understand the reason for his emotional distance, the apathy, the lack of connection and the careless comments. Until that day, when came home at lunchtime and told me he had been fired from his new job as a bus driver, a job he had recently decided to take because the delivery job was just so exhausting. He had been telling his co-workers that he was carrying brass knuckles and a box-cutter in his backpack, that he would carry them with him on the bus in case “the kids tried to attack” him. It was at that very moment that I understood, with amazing clarity, “this is brain disease.”
The next few months were a blur of emotions and desperation as we researched the possibilities and sought out doctor’s appointments (everyone was backed up due to COVID). I couldn’t believe the difficulty in just getting to a diagnosis
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of Frontotemporal Degeneration, and once we finally got it, was so disheartened, knowing from my research there was absolutely NOTHING that could be done. No resources, no treatment, just sympathy and the instruction to “get your affairs in order” and “be sure to practice self-care.” As the months went on, we learned all could from our group of “redwood warriors”, a support group of FTD caregivers who hold each other up and lead each other through this most difficult journey. I soon learned, the love of my life was already gone, his personality irrevocably changed, his brain already actively dying. All that was left was to keep him safe, and ourselves sane.
I can’t tell you how heartbreaking it is to watch the light die in the eyes of the one who once had eyes only for you, but now has the ability only to look inward at himself and the memories that make him who he is. Larry showed symptoms of the behavioral variant of FTD, as well as growing aphasia, the loss of words that eventually render a dementia patient mute. In addition to extreme apathy, loss of executive function and a loss of semantic knowledge, Larry’s emotional affect was extremely flat. He was still so, so polite, but the passion that he had for us was gone. He always thanked me for dinner, and repeated “I love you” back while he still could, but his loving gaze
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and his careful touch had evaporated with his synapses. My friend, my partner, my love was here, but not here, and my world came to a standstill.
Most of 2022 was spent accommodating Larry’s illness, finding caretakers to assist him while I continued to work from home, seeking information and watching for changes. His progress was fast, too fast, for what I had learned about FTD, and I began to suspect we had a secondary illness. Larry was showing signs of respiratory distress, difficulty breathing and muscle weakness. I was hearing a strange noise when he swallowed, and he was beginning to choke when he ate or drank, he sometimes bit his tongue painfully while eating. I could see the muscles of his arms and legs jumping sporadically, a symptom known as fasciculations. We all have twitching muscles sometimes, when we have overworked a muscle group, or are overly stressed, but this was happening in all his muscle groups, in all four limbs as well as his face and tongue, all at the same time. My suspicions confirmed in September of 2022, Larry was also diagnosed with ALS – Lou Gehrig’s disease.
Both FTD and ALS are terminal diseases, but ALS is particularly ruthless. Breathing and swallowing issues often follow the limb weakness and paralysis, but when they appear first, and when they
accompany FTD, a patient just doesn’t have any time at all. We were forced to decide quickly if we would employ any of the usual interventions one does to preserve life with ALS – artificial ventilation, a feeding tube, medication to slow the progress. But Larry’s FTD, as well as his advance directives, put into writing as we “got our affairs in order” informed our decision. Not only would he not tolerate any devices – I couldn’t even keep an oxygen cannula on him – his original instructions were, “no ventilator, no feeding tube”. Even though the cognitive impairment was already beginning, he knew what the ramifications of both were, and he was decisive when we met with our lawyer. As well, his ability to speak was already gone by the time we received the ALS diagnosis, and I knew there would be no way for him to tell us if he was in pain, if the tubes were blocked, if he were nauseous…. And so, we did nothing.
Or rather, we did the only thing we could do, and that was to continue to love on him, ease his anxieties with CBD, tempt him with his favorite foods, take him on field trips to see his father, to Chick-Fil-A, to Culver’s and McDonald’s - his favorite restaurants - where he would hug on the lobby attendants and give knucklebumps to all the people he met there. He was always a sociable guy, but now was hyper-focused on meeting every person face-to-face, giving them a little piece of his kind heart everywhere he went. When I realized he was leaving the table to spit out the tiny amount of food and drink I was getting into him, I knew we had
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I can truly say “It is well with my soul,” for my soul is forever entwined with his…
limited time. Even with his confused mind, he knew that to swallow meant he would choke and not be able to breathe, because he no longer had the muscles to cough and clear his airway. He chose to breathe, rather than eat, instinctively knowing that without breath, he could not live. Devastated, but determined, I gathered friends and family for one, final family celebration, where we could all spend some final moments with him and tell him how much he meant to us. I don’t know if he really understood what people were saying, but he was happy to see them, and it was a healing time for all of us.
Alone, these two diseases are insidious; together, they are almost unbearable. Our son and I watched Larry lose his purpose, and his strength, and his joy, and his SELF. We watched him lose US, drawing more and more inward as his disease progressed, unable at the end to understand the words of comfort that we shared with him, the words of love, the encouragement to rest. And we watched him die, slowly, desperate to stay alive, refusing to close his eyes, somehow understanding even in the chaos that was left of his mind that if he did, he would never open them again.
Throughout this painful journey, we focused on relishing the little things, looked for the joy every day as we all battled this horrible illness together. Drinking in every precious moment, savoring every second. We have no regrets, having given him the most loving, gentle descent possible. And now that he is gone, now that he is once again WHOLE, we are grateful – for all the support and love that we received along the way, for the memory of his joyful presence, his love for us, his strength of character, his calm assurance
and bravery in the face of all the ills of the world. We remember all those things, and they are comforting us as we walk through our grief.
We will never, ever be the same again. But the hole left by his absence is filled with beautiful memories, and light and love and those things are sustaining us. As we heal from this, we remember his joyous face, hear the love in his voice and bask in it once again, those things having been gone from his daily affect long ago.
I can truly say “It is well with my soul,” for my soul is forever entwined with his, and will be forever encapsulated by the love that he poured over us every day of his life. And our son and I will continue this journey together, one step in front of the other every day, supporting one another as we go. «
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To learn more about Elin and Larry, listen to Beneath Your Beautiful podcast Episode 85
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PHOTOGRAPHER Shawn LaClair instagram.com/shawnslaclair MODEL Kayla Kinks
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by Dahveed Bullis
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Dahveed Bullis is a professional theatre artist and a Spokane, WA native of 34 years. He is also a Co-Founder of Spokane Playwrights Laboratory along with Scott Doughty, and he is the head of the Theatre Arts Program at Company Ballet School.
Dahveed seeks to support all artists as well as furthering the craft in unique ways. As a teacher, he is known for his approaches towards script analysis, character creation and the art of connecting with scene partners. He has been doing various forms of playwriting, directing, acting and producing for over 20 years.
To learn more about Dahveed , listen to Beneath Your Beautiful podcast Episode 21
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Photo by Young Kwak
MarthaOne in five children will be sexually abused before their 18th birthday which translates into nearly a million children this year alone in the United States. Many of these survivors live with the effects of this terrible trauma for years or even decades.
Martha is one such survivor. Martha had lost hope. She did not see a path through the trauma she had experienced as a child. She had written her suicide note and was preparing to take her own life.
Martha didn’t tell anyone she had been sexually abused at age seven. She didn’t start to deal with her trauma until years later as an adult. She went to therapy and things got harder. She tried for years to heal on her own, but she was discouraged and felt helpless. “I felt like I was floating through time and not making any progress. I knew I had to do something,” Martha says.
Suicide. Depression. Anxiety. Addiction. Mental health issues. Insomnia. Relationship challenges. Self-harm. These are all common symptoms of sexual abuse that survivors like Martha experience. Following encouragement from her father, Martha attended the Saprea Retreat. This is where her story of healing began to take shape as she became aware of the compassion of others and how she could take steps to move forward. “I learned that I am valued and worthy to attend retreat and accept the tools retreat offers.”
For much of her life, Martha was angry and blamed everyone else for her challenges. “Becoming a survivor meant
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I was able to take charge of my life and know I was responsible for its outcome. I learned that what happened to me at seven years old does not define me. I now understand my value as a person and to help and support others through sharing my story.”
Saprea offers retreat at no charge to adult female survivors of child sexual abuse, so that others like Martha can experience the same compassion and support.
The Saprea Retreat is held three weeks of each month and hosts survivors from Monday to Thursday. Participants gather in one of two locations (Utah or Georgia) for an immersive experience where they can learn about trauma, apply healing tools, and build a community. Following the retreat, survivors receive additional education and support through online materials and support groups.
“The survivor may be working, raising families, and contributing to their communities. Despite these successes, they are still affected, often deeply, by what happened in their past,” said Shelaine Maxfield, founder of Saprea.
“Two weeks after I came home, I got rid of my plan and shredded my suicide note,” Martha remembers. “The retreat had changed me that much. It literally saved my life!”
Martha now shares her hope with survivors: “Love yourself for a moment more. Take life minute by minute, day by day. Hold on. Find someone that can help you – there are people who want to help you.”
Martha acknowledges that struggles are not entirely gone, but the retreat has
helped her to progress in her healing and learn to manage triggers. “Hope has not left me from that day. I know that I will heal,” she says. Martha now uses her voice to help fellow survivors know they are not alone and that hope and healing is possible.
Saprea is a global nonprofit based in Utah that exists to liberate individuals and society from the lasting impacts of this silent epidemic. Since its first retreat in 2015, Saprea has served nearly 5,000 survivors at its locations in Utah and Georgia. “Each retreat experience has been carefully planned by a team of licensed clinical therapists to help survivors on their healing journey,” said Saprea’s Chief Clinical Officer Betsy Kanarowski.
In an effort to help survivors jumpstart their healing from home, Saprea has created a Healing Webinar. Offered twice a month, the Healing Webinar is a 4.5hour interactive and educational virtual experience. Saprea also recently held its first Kosher retreat for the Jewish community.
Saprea wants all survivors to find healing so they can begin to reach their full potential rather than be defined by events from their past. “Our retreat helps women find hope in themselves and in their future,” said Maxfield.
As Saprea continues its mission to liberate individuals and society from child sexual abuse, more survivors like Martha can find hope and healing.
To learn more, visit saprea.org.
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Photo by Joseph Gonzalez
I’m a 45 year old wife and mother from Ontario, Canada.
I had the opportunity to attend the Saprea Retreat in April 2022. I travelled to Utah not knowing what to expect. Spending 3 days/ nights with other female survivors of childhood sexual abuse was comforting and trying all at the same time. We all shared a common heartache that nobody understands unless they’ve been through it.
Attending the retreat has been a crucial part in my healing journey. I will be forever grateful for the friendships I formed during the retreat. There is no such thing as a childhood sexual abuse “victim” –we are survivors. ♥
My name is Hara.
I was 54 when I attended the Saprea Retreat and had only discussed my childhood sexual abuse for the first time 2 years earlier.
I'm so glad I heard about the retreat and trusted the process because it was a lovely experience, even though it was challenging as well.
I learned a lot about myself, found helpful new tools and made many beautiful friendships.
I especially appreciated that the entire retreat was FREE and the care we were given top notch.
I am truly grateful for the experience.
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Hara loves Phillip. Thank you, Phillip, for being the Yin to my Yang. Or the Yang to my Yin. I’m not sure who’s who. Ha ha. You are perfect for me and I am the luckiest girl
Also, I like your face.
Winston and I rescued each other… Winston was stuck in a firewood pile on day that reached 114° and he was biting everyone who was trying to help. I eventually was able to slide a slip leash over his head and slowly pull him out.
I took him to the Palm Springs Animal Shelter but before I left I asked to be put on the first right of refusal for adoption because when I went to hand him to the guy, Winston looked back at me with such a forlorn look, sad that I was dropping him off.
I couldn’t get that look out of my head for weeks. Finally the time came and I got to pick him up and take him home! The first thing I did was crawl in bed and hold him for an hour. He still comes to me and lays on me and loves to be held like a baby. I’m his everything and he is mine.
At first, he was afraid of everything. He hated men. No one could pet him. He was scared of rocks on the side of the road. He hated boots.
He bit everyone (even at the shelter) but I knew, deep down, he wasn’t an aggressive dog. He was just overwhelmed with the fear. He has never growled nor bit anyone since he has been with me.
It’s been a long haul over the last year, building trust, but he is a fairly well-adjusted loving puppy now. Actually, the most loving affectionate dog I’ve ever had.
Like many 15-year-olds in San Diego, my friends and I often spent our summers at the beach. On a summer day like all the others, a girlfriend and I planned to meet one of our guy friends at the lifeguard tower at La Jolla Shores beach. We didn’t have to wait long before we saw our friend walking toward us, a stranger in tow. That stranger turned out to be Joel, who arrived with a surfboard under his arm, wearing a beret hat, long shorts and a shirt with the collar cut off. Somewhere in the back of my mind I heard the words, “that’s your husband!” and thought, odd!
Joel and I hit it off immediately, from that day on spending each summer day together, swimming, hiking the cliffs, and exploring the beaches and surrounding areas. Our fling came to an end when summer was over and we parted ways but remained friends.
I ran into him again at 18, just after graduating high school. We struck up a conversation as easily as we always did. “Hey, are you going to college?” As we began to discuss our plans, we realized we would be going to the same school, and decided to go register together. We ended up signing up for and attending all the same classes for the next two years.
Joel eventually decided to join the military and was accepted into the Navy. The time we spent apart while he was in boot camp was difficult and his absence made me realize just how much I cared about him. I was so happy when he returned, but was crushed when I learned he’d been accepted into Navy Seal training and would soon be leaving again. It was Valentine’s Day when he came to tell me, and Cupid hit me hard when I opened the door to greet him. It was that night we shared our first kiss; we were 22.
The next day we went to the beach, eager to spend more time together before he had to leave again. “I need to talk to you about something,” he said. His look was so intense – I realized he had something important on his mind. As I held my breath he said, “Shawn, when we broke up (at 15) and I sat on the curb and cried. I prayed, ‘God, if you bring her back into my life, please let her be my wife.’ I’ve never had another girlfriend since you because there’s never been another Shawn! So, I need to know right now, right here, we’re either in this to get married or we need to just stay friends. I’m not going to be some guy you date. So, what do you say? Are we in this to get married?” I was completely shocked and blown away by his boldness, but after a 7-year friendship, I knew we made each other better and were a great team! I said the only thing that made sense: “Ok!”
For the next two years, Joel focused on his training and I focused on college in Seattle, but we married as soon as his training was over! Shortly thereafter, I was accepted into my doctoral program and Joel and I had 2 kids in succession.
We were both so busy, but Joel supported me by sharing parenting duties and being my biggest cheerleader. Our lives went on to be so fulfilling, filled with unexpected wonders and miracles, unexpected joys and positive life events that we never saw coming.
Over the past 38 years of friendship and 28 of marriage, we’ve had many ups and downs, traumas and victories, and our marriage has simultaneously been one of the greatest and most challenging experiences. But when everything is said and done, I continue to stand and dance with my best friend, my love, my Joel.
DR. SHAWN HORN
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Photo by Brittany Brenske
Belov lives in Belarus, an EasternEuropean country nestled between Russia, Ukraine, Poland, Lithuania and Latvia. His passion for photography began in his school days, although now that he is an adult and has a family of his own, the past three years of pursuing his childhood hobby has grown into a profession.
One of his greatest desires would be to share his past with his wife and daughter, looking through photo albums and remeniscing. This is impossible, as his house burned down with all of the family photos. This may be why he values photography and the creation of memories.
His goal is to give every person he views through his camera lens the opportunity to experience the joy of viewing, again and again, those very happy and intimate moments.
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PHOTOGRAPHER AND MODEL Belov Evgeny instagram.com/b_e_l_o_v____
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by Jessica Roberts Bonar
It’s not either/or… it’s both/and. I am a strong, independent woman. I am smart, capable, driven. I am clever: a problem solver. Successful in career. Strong in relationships. Passionately honest. Living purposefully. I am also…
Tired. Emotionally exhausted. Fearful of instability… of finances, of companionship, of professional opportunity. Dented and damaged from past misuse of my life and the carelessness of others that have entered it.
I am whole. Complete. Maybe with the help of some metaphorical duct tape and super glue. But I stand here whole. My soul lacks nothing. All things that come into my life accentuate it. Bless it. But there are no voids to fill by others. I stand here whole.
I am in need. I need meaningful connection to feel truly alive. Connection to my higher power. To people. To nature. To my soul. I am searching. For more. More understanding. More empathy. More compassion. More love.
I have hearty bootstraps and strong arms to pull myself up by them again and again. I can pivot like a pro… adapting and changing to new conditions on the daily. Constantly striving to ensure that not only will I survive each burdening
obstacle, but how will I thrive. I won’t quit. I will find a viable solution… every time.
I am done. Over it. Empty of Pollyanna positivity. I need to collapse. I just want to fall apart for a minute… an hour… a day… a weekend. I can’t take another step, not another step without crying. I need to actualize the magnitude of stress I have been accumulating and let the dam of emotions overflow. Sob, shake, scream.
I am at peace. I feel solid. In my core. Things come into my frame that disrupt and disarm… but I have an underlying
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matter what. And I know it. Deeply. Truly.
I am angry. I have venomous thoughts that attach to people as their actions cross my mind. I am mad at who they are, who they’re not, what they’ve done, and what they haven’t. My frustration festers into resentment. I am stirred up like a fish tank when the rocks have been disturbed. It clouds the waters… my fist clenching feelings make all things less clear.
Book Jessica for your upcoming corporate conference, leadership training, team building or motivational event and learn how to apply simple solutions to complex problems that will change your life!
jessica-bonar.com facebook.com/JessicaBonarSpeaker instagram.com/JessicaBonarSpeaker
I have grace and dignity. I take the high road as often as possible. It is a lonely place, but it feels right and good to shed pettiness. I respect myself with my behavior and silently demand that the dignity I have found, earned rather, will not be sacrificed. I respect who I am, and thus I am able to respect those I encounter.
I am a shit show. I am emotional. I am insecure. I question my value and worth. I assume you question my value and worth too. I doubt. I cry. I want to throw a fit like a toddler. I do not know what I am doing, and I will be the first to tell you.
I am with you and alone. I am here and not available. I am put together and falling apart. I am collected and scattered. I am healed and shattered. I am lost and found. I am desperate and hopeful. I am devastated and joyful. I am threatened and safe.
I am BOTH/AND. «
To learn more about Jessica , listen to Beneath Your Beautiful podcast Episode 53 Beneath Your Beautiful Magazine 91
Johan Oyugi has been studying 3D Animation at Shang Tao Media Arts College. He is a beauty and fashion photographer based in Nairobi, Kenya. He chose this niche because he loves visual storytelling.
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PHOTOGRAPHER Johan Oyugi instagram.com/_justflipphotography_ behance.net/justflipphb798 MODEL instagram.com/nyakuar_john_ MAKEUP-ARTIST Stellah instagram.com/the_stylah HAIR Ronald instagram.com/crownedbyronnie SALON instagram.com/lamorebeautyarts ASSISTANT Epicrafts instagram.com/epicrafts_studio
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Since 2005, I have been working on this travel and street photo-narrative project in the UK, mostly in London. Being connected emotionally and professionally with the English culture, I have tried to show this personal bond in a pop manner, my main artistic influence.
London offers me infinite and vibrant possibilities for my photography with its arty, young, and neverending energy, and the fact that all my fetishes such as shop windows, plastic people, street portraits, food, abandoned objects, and curious finds are always there waiting for my cam. Then, I just revisit my favorite urban spots, the busy streets, and the markets, and push the form with reflections, repetitions, and saturated colors. London inspires me like no other destination in the world. Carpe diem!
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PHOTOGRAPHER Seigar seigar.wordpress.com instagram.com/jseigar
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Seigar is a passionate travel, street, social-documentary, conceptual, and pop visual artist based in Tenerife, Spain. He feels obsessed with the pop culture that he shows in his works. He has explored photography, video art, writing, and collage. He writes for some media. His main inspirations are traveling and people. His aim as an artist is to tell tales with his camera, creating a continuous storyline from his trips and encounters. He is a philologist and works as a secondary school teacher. He is a self-taught visual artist, though he has done a two years course in advanced photography and one in cinema and television. He has participated in several international exhibitions, festivals, and cultural events. His works have been featured in numerous publications worldwide. His last interests are documenting identity and spreading the message of the Latin phrase: Carpe Diem. Recently, he received the Rafael Ramos García International Photography Award. He shares art and culture in his blog: Pop Sonality.
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Julia Kutyreva, a photographer from Sochi, Russia, loves taking pictures of people the way she sees them. Sometimes she wants to take a woman to the mirror and say “Look how beautiful you are!” Then she picks up the camera and starts shooting. She is inspired by her characters. Each person is a whole universe. And she’s happy that she can become a small part of this world.
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PHOTOGRAPHER: Yuliya Kutyreva instagram.com/julsineya_photo
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Svetlana Nesterova instagram.com/svetnes.pro
Olga Popova instagram.com/olgapopova_op_
MODEL Anna Popova
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Dream images fascinate us and provide bountiful stimuli for the artist. Though dream characters present with the appearance of logical reality, the absurd finds its way in magical expression, bringing into possibility the painter’s ideal.
When we look at the images of a dream when we wake, features turn into symbols, the forms or figures elaborated in the subconscious which merge with memories to show us forgotten characters who return in disguise, but are still familiar. Dreams bring to the present the ghosts of the past and remind us of our desires, becoming shadows that we accept or reject.
The representation of our dreams is the desire to give shape to those fleeting images that emerge. With the interpretation of the dream images, the structure of the form is dislocated and we descend to the bottom of repressed impulses, to unfulfilled desire. The opportunity arises to retain the elusive images frozen in the permanent camera of time, allowing the artista to leave on the canvas the fleeting mystery of those images.
The awareness of what is real urges us to look at what we dream and turn memories into metaphors, which parade before our eyes. When judging the facts from our perspective, we transform the images into stereotypes that will never correspond to our lived experiences.
Manuel Garcia Montero matriculated at the Faculty of Fine Arts in Madrid, where he earned a doctorate in Psychopedagogy of Art. His studies included drawing, painting, sculpture, pictorial procedures, psychology and educational techniques.
A professor of Drawing and Design in Secondary Education Centers and in the Faculty of Fine Arts where he teaches the
subject of Human Morphology, Manuel’s personal artworks are featured in numerous collections. He has also worked as an interior designer, built furniture, designed lighting schemes, and created more than 30 murals. A frequent contributor at art conferences, Manuel has produced artistic and scientific videos about the subjects of light and color, with more than 40 specialized publications to his credit.
ARTIST Manuel Garcia Montero instagram.com/monteromiguelmanuelgarcia
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MANUEL GARCIA MONTERO
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