Slaying (Inner) Dragons

Growing up With Ulcerative Colitis

I don’t talk about this very often. Mostly because it was so long ago that sometimes it feels like it happened to someone else.

I guess, in a way, it kind of did.

That’s what happens when a chronic disease sets up camp in your body at the age of 14.

It was the fall of my freshman year in high school. I’d felt generally cruddy for weeks, low grade fever, stomach issues and finally I passed out in biology class. This led to blood tests, which led to the discovery of acute anemia, which led to my being taken quickly to the hospital for emergency blood transfusions and a battery of tests.

Admitted to the pediatric wing of Hahnemann Hospital, my room fairly vibrated with intense primary colors, and on one wall a large chalkboard with a rainbow selection of chalk. The doctor wrote a long list of potential diseases on the board, turned to my family and said, “We don’t have any idea what’s wrong, so we’re just going to start at the top and eliminate them one by one.”

This might not have been quite so bad if the word cancer didn’t glow in neon yellow half way down the list.

It took them nearly three weeks and a seemingly endless series of tests in which I was poked, prodded, probed and otherwise invaded with needles, tubes and other machines.

Then there was the night that I had an internal bleed they couldn’t find and it took three orderlies to hold my then 100 pound body to the bed so they could get a tube through my sinuses and down my throat to my stomach.

That was fun.

So when my doctor and his teaching crew came in one morning looking triumphant, circled “ulcerative colitis” with a flourish and pronounced they had found the answer, I was relieved. In 1982, however, gastrointestinal diseases weren’t nearly as well understood as they are today. In fact, the studies in children were nearly non-existent, and the treatments were both extreme and debilitating. Little did I know how much my life was about to change, or perhaps more accurate to say, how my trajectory through adolescence would be halted.

It was my freshman year of high school. At least it was supposed to be. Instead, it turned into a year filled with extended hospital stays interspersed with home-bound tutoring and wondering whether I’d ever be normal, ever be like other kids. I was supposed to be going to football games and tailgates, parties and most of all dating and exploring my sexuality.

Instead it was about being trapped inside a body that had turned on me, a body that alternated between emaciated and stooped and swollen and distorted from massive amounts of corticosteroids.

For just about 10 years my life was not my own. During that time I rotated in and out of hospitals, oftentimes too weak to get out of bed, and then there were the horrific experiences when a desperate race to find a bathroom would take too long and I’d have to undergo the humiliating experience of not getting to one in time.

In light of sharing some other topics, this one came to light as I was recently going through some of my stuff that is in storage and came upon a box of old files. Cracking the seal I began poring through folders and notebooks from decades earlier — including a final essay I wrote for an English class my senior year of high school.

In the upper left corner:

“Cathy A. Brooks
Colitis
Final Essay”

It opens with “I have a disease…”

I stared at those words. Feeling so removed. My Colitis went into remission rather suddenly in my early 20s (mapped almost precisely to my moving 3000 miles away from home to California) so reliving this experience felt surreal.

The words swept me back to the despair that saturated so much of my teens. Reading these words, the words of a frightened child who believedshe’d never see her 20th birthday. The essay related the chronology of events and occasionally dipped into the painful emotions that lay roiling like fire just under the surface.

Sitting on the cool air of the storage unit, the yellowed pages began to blur. Reading the words from that much younger me, a version of myself pretending to be strong and unafraid. How untrue that was and how much of that bravado and false courage had I carried for years.

I had spent the greater part of those ten years terrified. Terrified at first I would die. Then terrified I wouldn’t and that I’d have to live the rest of my life in a body that was more like a prison, a body that was betraying me.

Teenage years are tough enough. Puberty, high school, dating, figuring out what you want to be when you grow up, or at least where you intend to go to college. Growing up in a solidly upper-middle-class home, the pressure to get into a good school, study something of importance and do something with my life was ever present.

Compound the run-of-the-mill teenage stressors with feeling cast out by peers, literally and figuratively uncomfortable in one’s own skin, and wishing desperately that perhaps one of the colitis relapses would just prove too much and I wouldn’t have to worry about dealing with the terror any more.

This all taking place around the time I was 14, none of my friends drove, which made my isolation all the more acute. Between their having their own activities and life plans to get underway, my friends were just unable to get to see me most of the time. A few of them tried, and a couple of them served as remarkable touchstones, but overall my sense of loneliness and fear were the most constant companions I had.

To talk with my family or those who knew me at the time, however, you’d think that I was something like a saint — generally cheery disposition, cracking jokes with doctors and nurses, and mostly focusing on not letting my family worry. I’d been masterful with LEGO and Tinker Toys as a kid, and constructing an emotional barricade proved to be similarly well suited to me.

It wasn’t until many years and quite a bit of personal work later that I was able to begin scraping off the layers of protective shell and find the true strength that lay underneath it all.

Because that’s the thing, below all that false bravado lay an actually courageous soul. Someone who, when faced with discomfort or fear, always opts to take a deep breath and move forward rather than retreat.

This has served marvelously in many aspects of my life — specifically around work. What? What’s that you say? You need someone to emcee your conference for 1200 people? Tomorrow? Okay, where do you need me to be? Excuse me? What’s that? You need someone to moderate a panel on gender discrimination in the tech industry this afternoon? Sure.

Thinking on my feet, seizing challenge with gusto and finding that moving forward and leaning in feels infinitely more comfortable than retreat — all these are great skills that have been enormously helpful. As I mentioned in this post there are times when that penchant for steaming ahead can be counter productive. Remembering that not everyone deals with fear the same way is important — regardless of the type of relationship one is considering.

All these years later, with the disease still in full remission I’ve spent more of my life without Ulcerative Colitis than I have spent with it. Even in remission, however, the specter of the illness never fully leaves, the images of myself from those days indelibly smudged into my self-awareness.

It’s a funny thing, how we see ourselves. So rarely do we have the clear view in the mirror that others have of us. That journey to clear the view and see what others see has been one of the greatest challenges and joys of my life.

That I now get to support others in their own journey to do the same, to find their voice and unleash it? That’s a whole lot of icing on the cake.