Learning to live inside my body — from national TV at age 19 to nursing home at age 31
Content warning: Body image, weight, medical trauma, death, IVs, faith, Jesus, selling faceless body pictures, decapitation
Where I am now is not where I have always been with this question. But today, October 17, 2022, here is my answer.
In 2007—the year I was on the show Deal or No Deal hosted by Howie Mandel—a friend of the family was visiting NYC for Christmas and came home with an interesting story. Apparently, my picture was an option in one of the photo flip books of celebrities.
Not my entire picture exactly, but it was one of those late 2000’s era tourist type deals where you can take home a souvenir picture of a celebrity from the specific network, but personalized just for you! How personalized in 2007, you may ask?
According to this friend, some ladies picked out a souvenir picture with my mid-air, 19 year old body, and one of them paid to have their smiling face replace mine. This was an option on several famous people’s bodies. And then there was me. A very not famous person but clearly there because of my cute young athletic tennis outfit garbed body jumping on the stage in a moment of pure excitement. Y’all. It was 2007. All of us did not have access to photoshop and photo apps. Also, they made me wear the tennis outfit. But yes, I had been a serious-ish athlete, and had to quit because of heart problems.
So let’s talk about my young, athletic turned chronically ill, middle-aged body and how I’ve attempted to reconcile my internal self image with aging, growth, and chronic illness from uncontrollable rare diseases that hit full force at age 25, just six years after my Deal or No Deal appearance.
That girl on Deal or No Deal was suuuper cute. She was destined to stand suspended as a young adult, then young professional, then newlywed, jumping from all the excitement in her life. That’s not who I am simply because that’s your only snapshot of who I was. My brain knows I was always more complex than the snapshots of how the world saw me on national TV and online and on Twitter, and on that odd souvenir from the shop in NYC where you could pick out my body and put your face on it and take home the picture of decapitated me jumping for joy with your head in the space where mine once was. That’s fine. Take that body home with you and put her in your scrapbooks with your face instead of mine as a silly Christmas present because I, too, need to do that with my face and that young woman’s body. How much would it cost, specific network? Only joking. I can do it myself for free. But I’ve got the 35 year old original here, and she’s pretty awesome too.
Fast forward from Deal or No Deal age 19 to age 31. I was on TPN (total parenteral nutrition — vein food). I could hardly stand. I could barely shuffle with assistance. I couldn’t bathe or dress myself. But I was completely me inside. A former athlete and pharmacy manager. A perpetual newlywed married at age 23, sick by age 25. Then on our 8th wedding anniversary we had barreled past wishing for newlywed-dom because our marriage was no longer new. At age 31 I had to move away from my young husband and move into a nursing home because my body wasn’t working. It just wasn’t. There’s not a thing any of us could do about it. We’d tried everything. But like one of my doctors had told me the first night he met me in the hospital years earlier, “Of course you’re in uncontrollable pain. Your body is slowly dying system by system.” By that point everything in our lives seemed to be slowly dying system by system. Everything was in uncontrollable pain.
I moved in to the nursing home on our 8th wedding anniversary. The therapists there had to teach me everything to do with daily life again. I could definitely speak in the nursing home (I hadn’t always been able to), but I had speech therapy there to relearn eating. And my brain would outpace my abilities or speech. Who am I kidding, most of the time my brain outpaced everything else in this body. And what I was able to express or how I moved was clunky. My bones were stuck too often in a sticky thread of hot glue, both burning me inside and hardening so quickly my movements were useless because my nervous system wasn’t fast enough to move while my body was still malleable.
Sometimes it felt like the inside of my entire body was lined with the Gum Wall from Pike Place Market in Seattle, Washington. Like my brain was trying to wake up with coffee from the first Starbucks, but couldn’t always. Like my muscle memory thought I could both toss and catch the flying fish from the market easily, buuuuuuuut. Flop.
For the past 10 years I have been struggling with living stuck inside a gum-ball machine, but all the gum is chewed already and I’m stuck in it and there’s a toddler trying to operate the coin turn slot which is my only way out.
Welcome to chronic illness life. Lots of chewed gum analogies here. (None of the bad kind of chewed gum analogies. we’re scarred enough already, thanks bye.) So much gum, even though my jaw wasn’t strong enough to chew any for myself during the worst years.
By the end of my nursing home stay fifty-two days later, I had decorated my room in the nursing home with construction paper snowflakes. Like a preschool. Or a church. Or a classroom. Or a nursing home. Because I was able.
They removed my 3rd Hickman because we were all so hopeful again and we all did not fully understand my body could not hydrate itself without intravenous (IV) hydration.
Just three months later in February 2019 I had to have my fourth Hickman line surgically implanted in my chest. This is the same Hickman I used today, as I write this in October 2022. (If I’ve had 4 Hickman’s, you can guess I’ve had 8.5 PICC lines.) According to the vascular surgeon who implanted my 3rd Hickman, after the 3rd I only had one last remaining site for this type of access on my neck/chest due to my vascular scarring, vasculitis, and history, so my surgeon for my 4th Hickman in Feb 2019, was kind and made the IV catheter line itself as physically long as possible, wasting nothing, knowing the length of this tube hanging out of my chest may represent the length of my life as well.
Before, during, and in between my Hickmans I had to have PICC lines for several months to bridge and maintain access. PICC lines usually have the catheter exiting the body mid upper arm, or mid bicep, instead of sewn into the chest like a Hickman. This body has some scars. So do I.
At one point I had to be on IV steroids as my regular treatment for so long I gained around 200 pounds without eating. I literally was unable to eat. I was on basic TPN –vein food– for years. At my largest I weighed 322 pounds. The weight came on so fast I didn’t even recognize myself in the mirror for almost a year.
I’m less now. The weight loss also had nothing to do with food, or with my behavior or or or let’s just smash those clichés now because their sole purpose is shame and guilt and we already have enough of that mess from literally everywhere we turn. But let’s just say my skin has also been marked by ripping and stretching.
My journey has been long and difficult and is still ongoing (but I’m definitely in a better place than I have been in 10 years because I can post here!) Even though I don’t see many people, and I have to extremely limit my bubble, I still come into contact with a lot of people via the chronic illness and rare disease patient life.
Now, when I wear sleeveless shirts, some of my closer people have asked me if I’m thinking about skin removal surgery. Maybe one day for health, but not where most of them are referring. And not anytime soon.
See my arms will spur conversation. I can hold my arms up like Superman and flex my biceps now. There isn’t much muscle to flex but there is a lot of jiggly, floppy skin that hangs down beneath my arm muscles.
My reaction to the arm skin surgery question is currently this:
Now I flex my arms and say “I’ve always wanted wings. Why would I get rid of them when I’ve survived so hard to get them?”
This answer helped me begin to see my entire body in a more friendly way. Less like an enemy. I’m writing about the 10 year journey now and sharing on here my site. The writing and sharing has helped me establish anew and revisit my own strength. I’m thanking my body for surviving so hard through all these things.
And for finally earning my wings through it all.
Like some people say they “worked so hard.” Well. So did I. Our goals were just different. I survived so hard. And I earned these wings.
Me, 2022, with *wings* ❤️
I used to say life is like a bubbly crockpot and how you taste in the end is entirely up to you. In many ways time has proven this statement to be both entirely true and entirely false.
This body has fought so hard for me and against me and confused me and miraculously surprised me and terrified me and now I’m supposed to live in it—let alone love it.
I feel all mixed up, like the world expects all these juxtaposed things about my body and my health and my spirit and my mind and the way I love my husband and the way I learn are all supposed to be thrown together in a countertop mixer and then I’m supposed to emerge as the perfect cookie dough they thought I would become. Me as I once was, just older and with the slightly weathered beautiful look to my young face. Like the kind of skin that’s maybe it’s may-be easy breezy beautiful cover-ing a girl who never was going to be a woman.
See, that young woman was always going to change. Into what? Not the perfect cookie dough, I’ll tell you that much right now. Ha. But instead of putting all these ingredients collected from the span of a decade of desperate illness and survival, placing the assortment all together in a kitchen mixer in a perfectly adorable Jennifer Garner or Tabitha Brown or Selena Gomez tiktok or IG baking story (I wish! thank yall, just. THANKS YALL.?) *instead* of a perfect dough, I’m sitting here proud of being alive and once again recognizing my new face in the mirror and finding clothes that fit this new me and relearning how to balance and regaining strength to jump and regrowing hair for the third time and bathing every week again and being able to hug my husband who has taken such great care of me for TEN YEARS of his youngest adult decade.
I feel like all these random facts, life in a nursing home at age 31, gaining 200+ pounds but never eating a bite in the process, faith in the ultimate healer God, and His son Jesus Christ, through a decade of rare diseases, 8.5 PICC lines, 4 Hickmans (one still used everyday!) years of having an very strong image of me out in the world as the world’s picture of me, while I was living a time with my only interactive friend being Jesus (and healthcare angels). I couldn’t even interact with my husband on a consistent basis. All of this while surviving (barely living) in a world that seemingly valued everything I could no longer be. I felt like life had thrown all of these facts into my previously delicious bubbly crock pot. And then, the world–including my younger self–said to me, “how you taste in the end is entirely up to you.”
Sigh.
After all that stewing, with so many ingredients I had no control over, there are going to be certain flavors that will always arise in the tasting of my stew. But ultimately, how I taste in the end will be way, way, way more substantial and nutritious than a batch of perfectly sweet cookie dough. Not saying my young self wasn’t nutritious and substantial. I am a PharmD and have always been a writer and creative person. I had already died once, so by age 19, I was familiar with life lessons some of us don’t face until decades later. But I’m saying if I had *chosen* what went into my kitchen creation mixture, I wouldn’t have chosen everything I’ve been handed, and I know many of us would say the same.
Now I’m learning that my words I speak to myself, shape my words I speak to others, which then are mirrored back toward me. I set the tone and the space for which others around me can speak about me, my illness, and my health in my presence. And that’s all I care to know. Sure I hope you’ve got good things to say about me behind my back, but I’m only going to devote energy to those of you who lovingly HAVE my back, or are placed in front of my face by God’s Grace. Time is life. Energy allows us to access life.
I will not waste my life.
This is a new authority I have given to myself. And it’s the best present I could have ever received from myself this far into my journey. I haven’t always held the authority of my space well. Because honestly, there were many times I couldn’t even breathe or sit up, let alone hold anything. (In the future we will address things said around me by those in positions of authority while taking advantage of my weakness. Because I am strong now. And not all of us are. And abuse of power is wrong.)
Anyway, I survived hard for these wings, friends. And there’s so much more where that came from. This life is still not easy. Without a miracle, I am most likely never going to be close to what I once was physically. But I am also not even close to who I thought I’d become inside. And for all the ways I want to be in that old body, I also know that old body was how it was because it wasn’t able to be nourished and hydrated. I will actually be able to live now. In this body. With my wings. And not rush through life, but instead observe, absorb, and enjoy in growth.
Growing while Aging is a supreme privilege.
You can have aging without growth. But unchecked aging results in confusion, and ultimately pain.
You can have growth without aging. But unchecked growth results can be unhealthy or even risky. In both cases growth and aging (when present singularly) can result in disruptive physiological changes at the cellular level. And once again, more pain.
We are not meant to experience growth without aging or aging without growth. Sadly this is how many of us with chronic illness live. Stuck bouncing back and forth between growth and aging like Pong. This rubber band effect is not only exhausting, it is also painful and unsettling because our bodies are not meant to be bouncy balls. We are meant to be planted—to establish roots so we can grow at a reasonable pace while we age.
When you are able to experience both growing and aging simultaneously, there’s a supernatural appreciation that enters the equation bringing with it a synergistic effect. Both aging and growing become infinitely more enjoyable together than when they are experienced singularly. Amazingly, the exponential effect I’ve encountered from finally growing and aging side-by-side is that my outlook turned around. Had I been experiencing either growth or aging singularly there would be a loss of something and an overwhelming presence of pain. Even though my experience has been an extremely mismatched ratio, now the two together have changed me. What often was only painful, has now been overwhelmingly overshadowed by an unexpected cloud of thankfulness which led to joy within my circumstances.
The meeting of aging and growth is where I become appreciative of my continued existence.
The meeting of aging and growth is where I become thankful for my continued existence.
— @Hayfarris
I wish only the same for you. May you regard aging as a privilege and growth as an experience we do not all get.
And may you know your worth, no matter how much the television network sells your faceless body for in their souvenir shop.
———
Speaking of SYNERGY
There have been many wise voices leading me into and through very tangled spaces.
Kate C Bowler is one of the greatest.
(Please do not confuse my single post with complete resolution with everything in my life. Being human means I’m always a work in progress but I’m hopeful and so thankful to be interacting and present. ⚡️ Over here, the Victory is won. Thanks to Jesus.)
((Been meaning to call in to leave a voicemail for her podcast ever since I saw a story request re: loving this body. So, thank you Kate C. Bowler for the inspiration and wisdom and openness that led to this post.))