It’s Hard to Explain Why My Body is Covered In Scars

A detailed piece about pieces of my broken body and what it all means

Thank you for this special week together!

I’m going to warn you:

THIS is a super long piece I wrote about living with my current health circumstance and how it all breaks down to me.

I shared pieces of this on @catchingbreaths a couple of weeks ago as a way of staggering my Instagram writing from my Substack writing for Word Nerds here.

I want to make sure your support is rewarded (without you, this chronicle and archive wouldn’t exist!), and thus: It only seems fair that you get pieces at least a week ahead of the sometimes-chopped-up, word-limited versions on digital media.

Even though there is a chance you may have read chunks of this previously online a couple of weeks ago, I wanted to end a busy few writing weeks by archiving the full (not-chopped-up) version of the piece here, incase that’s helpful… or you prefer to read something without it being broken into parts… or because you like going back to read things later when it’s a good time for you.

So grateful for you!

xo

If we haven’t met before, sometimes it’s hard to explain why my body is covered in scars… Or why my vessel is like a lifeboat; Leaking ocean water, duct tape. But, it’s really not as complicated as it might seem.

In talking with an ovarian surgeon recently, for example, it’s discommoding to go over my medical chart with a new person for the first time, and feel the whiplash of how much has truly happened in the last few years.

If we haven’t met before, I’d say, “Everything I have falls under the umbrella of Cystic Fibrosis”…

And that’d be mostly true. It does. In fact, when a recent liver biopsy basically just showed my hepatologist what we already knew - “she has CF Liver Disease”- a part of me wanted to bathe in the compurgation of how bizarrely anticlimactically comforting it is to confirm what took years to diagnose.

Because I was diagnosed with atypical CF later in life by most medical standards (but not so delayed that it doesn’t align with the paths of some of my friends or many before me), I suffered some years of my late teens to mid twenties being twisted and woven like cotton candy crystals through various “could be” diagnose scenarios - taking years to realize that the spectrum of CF and CF related diseases were expanding as we were aging along with.

My generation is (essentially) the generation that changed in parallel to the proposed lifespan of CF; Watching our predecessors and even closest friends pass away as we drew the longer luck straw somehow, and kept living to see new treatments, gene modulators, and antibiotic options evolve.

I cannot take the gene modulator currently - but I have an amazing CF clinic, and organ inspection results as boring as “CF liver sh*t”, which feels avouching in light of how much I lived in the dark just a decade before this.

Sometimes it’s weird to think that hypothetical labels were slapped on me like Post It notes as we searched to understand (my first sweat test ever was borderline, for example), until erudition metamorphosed and our understanding of these types of illnesses did too. Now, my damn organs under microscope can confirm what once was doubted... And that’s still surreal but a settling salve of science, to say the least.

Thank goodness some of my doctors never gave up on me. I’m not sure I’d still be here otherwise.

My CF-ish variant umbrella disorder (that’s my new technical term) muddied the rainy day waters for years by impacting my digestive system much more than my respiratory - thank goodness for me; Presenting as atypical and confusing the thick, dusty binder type of doctors in the wings abound.

So even though I look like I got into a sword fight with Inigo and lost, the Zorro like autographs on my abdomen are actually a sign of how lucky I am (and how much I see my friends receiving lung transplants or losing lives) and I wonder how to uphold that love while wearing Unworthy Survivor all over my chest.

Due to its impact on my digestive system, I have lost most of my colon and my large intestine (best surgeries I’ve ever had), and continue to talk with my colon doc about an ostomy but can’t get up the guts (a pun) to do it.

I’ve had more embarrassing surgeries for hemorrhoids, and tears-down-stairs, and internal hernias than I’d ever want to list - beyond those vulnerable words there- and suffer from a salty, snarky GI full time (think things like frequent blockages, pain attacks, upwards of 6 intestinal ulcers once, and lots of Sunday-bloody-Sundays, all days of the week).

Prolapse is sometimes a sign that someone has CF (especially in young children), but I didn’t know I’d accidentally checked that box until many years ago when I underwent an unfortunate and unwanted full hysterectomy (and some other stuff), because I just can’t seem to keep innards in their place.

I have classic CF hallmarks that you’d see in a film with Cole Sprouse and Haley Lu; Things like feeding tubes for supplemental nutrition or when surgeries or blockages interrupt absorption. I recently asked my clinic if I could get them out and they said to leave well enough alone for now (with better wording). ‘Better safe than sorry’ sentiments, though I am illogically more the latter than the former.

I’ve had a Nissen Fundoplication and might need a revision to tighten the old- as an uptick of symptoms has caused some low key distress and lung scars. There are a ton of CF patients who’ve had this as an aim to keep GERD away (which roughly over half of CF patients have) to prevent lung damage, so… it’s under the category of Kinda Expected too.

I am thankful for life saving devices and all that, but (admittedly)… not as much as I should be. My Dad is a perfect example of how I WISH I was. He named his defibrillator “Hal”, after Kubrick’s Space Odyssey- and when he needed to get it replaced, he asked if he could bury or have Hal 1, since it kept him alive and was part of his life for so long.

I don’t have dystopian names for my Hal’s but I should. Even though I say “all my scars are from the CF umbrella” to explain something that’s often still fully mistook as a lung disease (as an example, it impacts my sinuses, stomach, liver, heart): My genetic heart illness is and could technically be seen as something all it’s own.

My Dad’s Dad had heart problems that sadly took him tragically young. My Dad almost died from his own and thanks every day he’s still here. And I have something called Brugada which is controlled well now by a machine that paces internally sometimes, has only defibbed twice, and stays chill with two clockwork heart medications. But… I definitely almost died from it years ago. And I definitely should remember that more often.

Sometimes I think I survive by NOT thinking about the “Hal’s” of my survival system, even if they’ve all have benefitted my life. My gastric pacemaker deserves a name for its hard work. My portacath is another cliché CF checkmark that’s annoyingly needed but under-appreciated by me. And half my neck and back are screws and bolts and ladders.

But heart problems can be a part of CF… it’s just not talked about a lot. My Deafness can be a part of CF (though mine also runs in the family)… it’s just not talked about enough. One of my CF journalism bosses has a cochlear implant, for example. It’s not new news or old news… it’s just misunderstood news with those with dusty textbooks; Ink running together from the umbrella-surfing rain.

I haven’t had an organ transplant yet and don’t see any in my future (if I did, it’d definitely be my liver). I haven’t had cancer yet - though we’ve had a lot of little things to keep our eye on- and that seems shocking at this rate, as SO many of my friends aging with CF are getting different forms of this f*cked up nonfiction- and I don’t know the science of why. (Someone does? I can research?)

There are two plot twists though, that I can’t go without saying. The first is the ovarian cysts I’ve been battling, along with unhealthy hormone levels, in the last few months.

Years ago, one of my male CF friends talked to me about how little education was done for hormone level dysfunction in those with CF, and how much it was actively hurting him. Another friend - a female with CF (relevant purely to show the variety of hormone occurrences)- has been open about her struggle with endometriosis, and I didn’t even know how common that could be for us until the ovarian oncologist said my cysts were positive for that at my last surgery. Befuddling to me.

But nothing beats what a nightmare my spine has been for the last 8 years or so. To be fair, it always has been (suffered vertebra fractures from a fall in my teens)- dancing through pain my entire high school years and never doing anything about it except herniating spiritually (and sometimes literally) for every unattainable arabesque.

Personally, I would take every organ malfunction in the world if it meant my spine degeneration could go away. It has single handedly been the largest medical nightmare of my life- leading to a dozen surgeries and constant pain. Some of it seems predestined (how can we control our own skeleton?) and some of it seems… like the thing that might be my end one day. It is unbearable at times (almost all of the time)- and I never saw this in my future.

Is that beneath the umbrella? I guess it depends on you. What do YOU think?

My sibling has back pain and problems - so we could blame dance and DNA. CF patients have to have annual Dexa scans to check bone density so… clearly we aren’t known to have great hydroxyapatite? Some have had joint replacements already. I have decreased bone in my left hip, for example. But for me? My back feels like the one deranged evil that I won’t accept as part of the packaged deal.

Hearts and hearing loss and deficient colons (and even the new ovary bullsh*t), sure. It all fits into some statistic. It’s all being experienced by another or could have maybe been predicted if I’d looked far enough ahead (behind?) to the medical tomes that we have now started to rewrite by our very existence.

The more we age and change with science, the more science changes for us.

Looking at my body and seeing all the operations and complications on one portal? Too much. But to anyone who feels genuine embarrassment like I do that their life hasn’t read like a procedural script about procedures as it’s evolved: I think we are living proof that stereotyping somatic matter (and data that’s only as good as the last person who changed it) is only for the small minded. The creepy stalker Reddit peeps of the Internet who need to get their own lives or volunteer for a charity or something, badly

I’ve heard of them from seeing others post about it but refuse to give it the time of day (unless I could potentially protect someone else), because I always imagine what my clinic doctors would say to someone like that in person. (It’s a hilarious scene.)

Yet, every time a doctor says, “When I read your chart before knowing who you are and how you function… I thought you wouldn’t be functioning when I saw you”- I’ll admit to a dark and not-so-pretty pride. If a doctor says it’s bad *ss I’m still dancing, or that my life isn’t all about my health (it only is here, where I compartmentalize by writing about it): I feel pride. But what does that say about how I see the hierarchy of how patients are perceived in healthcare and (worse yet) online, depending on how much or little they share?

Why do I allow myself to not just be apart of the judgmental problem… but actually BE the problem?

If I feel relieved that I have defied a doctor’s expectations with how little they’d imagine I’d be walking or working [from looking at my chart]…

Then what does that say about how I view my friends who aren’t as “fortunate”?

And is it even “fortunate”?

Or- if when I ruin family outings by refusing to sit down as my daughter begs me to, and cut fun days short by pushing too far past the pain… am I the one who’s idea of a successful life is deeply and bitingly wrong?

I’m getting back to work, slowly, these days - after taking almost a year “off” so that the bones in my pelvis and lower back could fuse properly - and every time I think I’m at the end of that yellow brick, my neurosurgeon says my bones are taking longer than expected and I need to give it even more time. But even though I’m “getting back to work” by outside standards (working in a sometimes snobby field in a snobby way again), I never really stopped.

I kept working as a journalist all this time, and I kept getting auditions as a performer (letting myself be proud I got a callback for a contract as a dancing Disney Princess on a cruise was the highlight, but I couldn’t travel to Toronto fast enough for the final phase. But why don’t I let the gift of being called back at all FEEL like a gift? This world has so few wins. Why does it have to be a “home run” to be celebrated?)

We live in a results driven universe.

We only think an actor is “successful” if we see them in movies… Yet, don’t seem to know or care they’re happily thriving in theatre on the West End.

We only think a patient is worth our patience if they have a triumphant finish line to cross. If their scans will never come back clear (thus they’re never going to actually shut up about what just IS part of living)… Do they deserve to be proud of being so unwell at living?

Or do they (I) only deserve to allow that pride when a doctor says, “Wow, I couldn’t tell you’re as sick as your scans when I look at you!”

“Wow, I didn’t know you were Deaf because you speak so clearly.”

If the outside vantage knew what it took to even appear to sometimes “blend in” - whether with hearing loss, sickness, mobility- Would it somehow cheapen the non existent end point? Does it… now?

If we realize our well intended compliments come only from the lens of those hearing and abled (“Alexa, please play Prince’s ‘Willing and Able’”), and that that doesn’t mean it’s the better view, it just means it’s the prevailing one: Can we begin to redefine what success looks like for the individual?

Medicine and our idea of disease is made by human minds.

Meaning… It’s subject to change. Our human subjects will change it.

We never know everything (not yet, anyways) and new parts of the umbrella are discovered in all areas, all the time. Yet, no one thinks they know more about every one than a human’s one mind.

We want facts and finites; Wins or flat-on-their-face-and-filmed losses. Anything in between has no place in most places for us… Least of all the antisocial annals of social media.

If we haven’t met before, sometimes it’s hard to explain why my body is covered in scars…

But maybe, even if I did and would and do, the problem isn’t what problems led to this…

It’s that so few of us will truly listen anyways.

Thank you for this week together.

Kindly consider booming a supportive Word Nerd if you’re able (every little bit counts and helps keep this ongoing memoir going, or…

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