Roads Taken and Not Taken: Caitlin Caven '08
I was sitting in the exam room at my doctor's office alone, reading Final Gifts, a book by hospice nurses about caring for the dying. The book got particularly poignant, and I started to tear up; a voice in my head snapped,“Pull it together. He's going to come in, find you crying, and you'll have to explain yourself.”
That voice in my head is usually right, the bastard. I sniveled and started wiping my eyes (â€œJust allergies!”) as my doctor opened the door. He took one look at me, rolled his eyes, sighed, and left again. I burst out laughing. He came back in, grinning. This is precisely why I chose this doctor: Sure, anyone can do a colonoscopy, but I like my gastroenterologists to have a little vaudeville in 'em.
There is an element of truth to every joke, and here's one of them: I have no doubt that some part of him dreaded seeing me. I am what the medical establishment calls“a refractory case,” which makes me feel fun and pretty, like a prism. (I make rainbows!) Unfortunately, like prisms, we refractory cases are generally useless except as teaching tools.“Refractory” means that I fail every treatment, or it fails me. The beautiful constellation of my insides doesn't take too kindly to medications, so my caretakers may as well make jokes: I'm going to be a problem.
I'm currently on a road I never wanted to take: that of full-time, professional patient. I was diagnosed with Crohn's disease, an autoimmune attack on the digestive system, when I was 10. The medical understanding of Crohn's is still somewhat medieval, but the clumsy drugs that exist got me (mostly) through high school and (somewhat) through college. I was able to live in sweet, partial denial until late 2012, when, despite weekly doctor visits and monthly E.R. stays, my symptoms had gotten so severe that I was sobbing behind sunglasses on public transit and too weak to climb the stairs to my apartment. Caitlin the self-sufficient, ambitious 20-something died, and whatever I currently am rose from her ashes.
What followed was the hardest year I have ever endured. I rallied my dwindling energy to go to acupuncture, nutritionist, doctor, and massage appointments, then watched numb marathons of reality TV in between. The air was tense with my family's worry, though they did an admirable job of trusting me to make my own decisions. My weight dipped to a barely human 70 pounds, as my brain chemistry and personality flattened to cardboard. For months, I was technically alive but nothing more.
With life-threatening illness, I've learned, the first emotion to die is joy; the last one to die is rage. Rage is what got me to one doctor's office, and then another. The rage wasn't tied to self-preservationâ€”I was willing to die. It went beyond that. It was anger at the uselessness of the medical system, the way in which doctor after doctor made concerned faces at me, then patted me on the head and told me something akin to,“Good luck out there, tiger!” It was rage at the assembly-line feel of a hospital, at how often my humanity was discarded and bodily autonomy all but ignored. It was rage that my body was attacking other parts of my body, and all anyone could do was give me saltines and bill my insurance.
At my insistence, I was finally put on IV nutrition administered via a PICC line, a long-term IV in my upper arm. It's relatively subtle, as far as medical appendages go, and easy to hide. Ten months later, I'm back to my fighting weight, and my emotional spectrum has filled out nicely with other, less rage-y feelings. I'm doing an OK job of mimicking healthy, normal 20-somethinghood, and to a casual observer, I'm just another mouthy, hyper-literate pixie. (I live in Austin, Texas: We're a dime a dozen.) The future is uncertain, though. I'm out of options, and the idea of continuing to be fed like a houseplant with dropperfuls of Miracle-Gro is sobering.
It's hard, now that I've had to confront the extent to which my illness has impacted my life, to parse out the difference between“Caitlin” and“Crohn's.” For instance, in college I skipped or slept through classes regularly, rarely did all the readings, and chalked up my“Aim for a B!” ethos as garden-variety laziness. Looking back, I realize that“not feeling well” is not the same as“lazy.” And as someone who has fought her whole life NOT to be defined by her illness, it's strange to renegotiate my memories to accommodate this knowledge.
A residual side-effect of the last few years is that I no longer fear death. It is profoundly freeing: Being fine with your mortality is a real time-saver. It has set me on a totally different course, and put me in touch with some extremely interesting, wonderful people. It doesn't make the pain worth it, but it's a pretty good consolation prize.
Caitlin Caven '08 graduated with a degree in anthropology and currently lives in Austin, Texas. She writes the blog“Better Living Through Snark” for Psychology Today about being young and chronically ill. She is still fun at parties.
This essay originally appeared in the spring/summer 2014 issue of Haverford magazine.