yours, tiramisu

⭐ i can't help it if i'm lucky

I've been thinking about whether to switch doctors recently. I have a rare, incurable chronic illness that I see a specialist many states away for, and as far as I know, there are only two doctors in the whole country who know anything about my condition. Mine happens to be an egotistical asshole, so I'm looking to switch to the other. It seems like they might not be as knowledgeable but they're a heck of a lot nicer, and at this rate I'd prefer a shorter life with a kinder doctor to a longer one with my current one and all the stress it entails.

It's been more than two years since I've been properly diagnosed (which came after a long six month journey of figuring out What The Heck Is Wrong With Me), so I've had plenty of time to come face to face with reality. Still, it feels a little jarring to come across my odds of success spelled out like in these snippets I found in the new patient pamphlet for this new doctor. (Disease & organ redacted for obvious privacy reasons.)

yours, tiramisú

Up to 50% of patients will suffer end stage disease within 10 years of diagnosis. Recurrence of [said disease] post transplant happens in up to 90% of cases. 50% of transplant patients will develop clinical recurrence and lose their [organ] within 5 years.

It's not like I haven't been warned, either. One of my early specialists said that our goal was to "keep me alive until something else kills me first," which is a doozy of a motivational speech if I ever heard one. The Stoics advocated for memento mori, a type of meditation in which you imagine your own death to cultivate a better appreciation for life and the people around you. It's an exercise I come back to time after time; there's nothing like the reminder of how short our lives are to make you appreciate the things you might take for granted. In spite of my frequent meditation, the real prospect of my very own impending death still frightens me. It's one thing to imagine an abstract end to my life where I just one day cease to exist, but to think about the possibility of suffering a slow and painful death wasting away in the hospital while hooked up to bags is a bit harder to stomach.

To cope with the uncertainty and unpleasantness of it all I engage in an extreme form of medical avoidance, defined as a "patient disengagement that impedes an individual's health behaviors or causes them to delay obtaining health care." I take weeks to respond to simple messages from my healthcare providers, avoid checking test results, delay scheduling appointments, and go out of my way to not educate myself about my condition. I know these are self-destructive habits that are only likely to make my situation worse, and I've mentioned them to my therapist too, but I still don't know how to correct them. (Or even want to, for that matter?)

yours, tiramisú

People who receive news of stage 4 cancers or similar terminal illnesses often speak about enjoying life more after their diagnosis. I tasted this too at the outset of journey when my diagnosis was still a mystery; doctors feared the worst, like cancer or stroke or leukemia, and I remember savoring everything I did with the very real possibility that it could be my last time. Even driving to the hospital felt like a religious experience: what if I didn't come home afterwards? Ever?

Unfortunately, this altered state of mind didn't last, and now that I have a diagnosis all I know is that the years I have left could vary wildly. Some patients die within five years, while others live long lives before succumbing to unrelated causes. This uncertainty asks me lots of questions about how I want to live my life. Should I push my body to travel and do more now while I still can, at the risk of overexerting myself and worsening my condition? Is it foolish for me to save for retirement when I know I might not be around? And how can I in good conscience enter any relationships when I don't know if I can promise that I'll be there for them in the end? (I know nobody can really promise this, but I have extra cause to believe I'll leave them high and dry in advance.)

I don't know what to make of the answers to these questions. But I guess until then I'll heed the advice I saw in a bookstore yesterday: write hard and die free.

#english #journal #life