Seen Book - Full Layout - v37 - Jodi Digital Pages-DESKTOP

TABLE of CONTENTS

Introduction 1 / UNFOR REVEAL 6 / Seeing W 5 Ways to Make Life Wit Insightful Tips & Tricks F ALLISON’S STORY 3 Woman Syndrome 50 / Th Clearing Things Up 60/ LO JOURNEY 64 / The V / Good Vibes Only 81 / G With Your BE 90 / THE CHOICE 94 / Only t About Self-Care 108 / Th Through the Bad Days

RESEEN CIRCUMSTANCES: JODI’S Who I Really Am 8 / Opening Up on O2 22 / th Oxygen Tolerable 28 / Staying Independent: From Jodi 30 / SEEING BOTH SIDES: 36 / What I Never Saw Coming 38 / Invisible he 10 BE Medical Terms You Need to Know 58 / OOKING FOR HARMONY: AMBER’S Voiceless Songbird 68 / The BE Rewind 80 Getting in the Groove 82 / Recipes in Tune E SECRET TO HAPPINESS: EDNA’S he Bright Spots 96 / The Unselfish Truth he Power of Sleep 116 / Mantras for Getting 118 / Speak Up In BE...and Be SEEN 121

Unforeseen circumstances JODI WAS DIAGNOSED WITH BE IN 2019

SEEING WHO I REALLY AM The daily struggle with breath, self-perception, and being truly seen by others Even with my eyes closed I can tell it’s the early morning and still dark.

I’m guessing it’s a good 30 minutes before my alarm sounds. As I lie in bed, I’m focused on 2 things: my nose cannula resting on my upper lip and my breathing. I inhale. It’s a quick, sputtering pant with a wet rattle beginning to end.

My system for monitoring my breath is quite simple. If I inhale and there’s no tightness, no hard-to-describe but distinct feeling like something is lacking, it’s a good breath.

That last breath was an iffy one.

6:00 AM It’s 6:00 and I have my doctor’s appointment at 10:00. Between nebulizing, nasal rinses, allergy sprays, getting cleaned up, and eating breakfast, I know I will have to hustle. I make my way downstairs into the family room, past the couch where my 2 dogs Bindi and Jasper are still sleeping, and over to my nebulizer. I keep it in the perfect place, a corner between the wall and my computer desk, still within easy reach but hidden away so my eyes can glaze over that area. I inhale again. Hmm, that breath was better.

With bronchiectasis (BE), it’s hard not to think about breathing every minute of every day.

But I don’t like thinking about it—in fact, I hate thinking about it. There’s nothing I can do about it, though, so I tuck those thoughts away, move my nose cannula, flip my nebulizer on, and inhale through the mask. Yes, better.

My breathing is better now.

It feels like a confession to say I kept BE a secret. But that’s what I did, especially in the beginning. I didn’t want people to know, because no one really understands the whole thing. Like when we went to restaurants and there was a short walk from the car to the door. The hostess would be the first to notice I couldn’t catch my breath, and as I huffed and puffed on the walk to the table, I could tell everyone’s eyes were on me. They were probably thinking, “Oh, she must have been a smoker.” And yes, I was. But whether that caused my BE or not, my doctor doesn’t know.

7:00 AM It’s 7:00. Nebulizer done, nasal rinse done, allergy spray done. I drink a cup of coffee at my computer and scroll through the internet.

More than an hour goes by as I sit there, catching my breath and waiting for everything to kick in before I take my pills and maneuver myself and my oxygen tank back upstairs.

I make it all the way to the bathroom before I realize I forgot to use my inhaler. I sigh—I’ll just have to do it later.

For bathing, I use a neat little black stool to sit down while I shower. I bring my oxygen in and have everything on the ledge in front of me, my terrycloth bathrobe hanging just outside the sliding glass door, ready and waiting.

Before I was on oxygen, I had a slew of tricks for making it seem like I wasn’t out of breath, and I used them all when I was going out. I picked restaurants with lots of parking spots close to the entrance and always arrived ahead of time so I could walk in nice and slow. And forget places in the city—I couldn’t do that.

8:04 AM I look at the clock. It’s already past 8:00 and I’m running behind.

I get dressed and head back downstairs for the second time this morning, toward the sound of Suzie, one of my cats, meowing for her breakfast. I have 6 pets, not counting the outdoor ones. I have this abnormal love of animals and must be surrounded by them constantly—so much so that I made a career out of it.

I used to go to people’s homes and play with their animals for an hour or so—it was just a dream come true. I couldn’t believe people paid me to come and love their animals. Then my health got bad, right before the pandemic.

The one unexpected silver lining of COVID-19 was I could bow out of my pet-sitter gig gracefully without saying I couldn’t breathe.

I still miss it, though. When I remember walking up to a client’s front door and knowing Roxy or Nilla was just on the other side, excitedly waiting to greet me, my heart aches just a little. It’s an ache that hits me at the strangest times, like now, as I pull a bowl of fruit out of the fridge and move one of my grandkids’ sippy cups over so I can sit down at the kitchen table and eat. I inhale. It’s a shallow, petty thing, and I need to do a few more in quick succession to get enough air.

COVID-19 happened right around the time of the stair incident. My husband and I were watching the grandkids and he went out to get some pizzas. Well, during that time my grandson woke up from his nap. I went upstairs to get him but didn’t have the breath to carry him back down.

I must have stared at those steps for a good 10 minutes, my grandson squirming and fussy in my arms, before I decided I was going to have to scoot down them on my butt. There was no other way. I held my grandson tight in my lap, and all these feelings swelled up as we went down,

down,

down.

That broke something inside of me. I realized I couldn’t do this. Any of this. I couldn’t get up and bring my grandkids downstairs after their nap. I couldn’t keep up, and to me that meant I wasn’t a good grandmother, and I should be a good grandmother.

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