Buenos Friday, darlings.
Not too much to post today (kind of the story of the past few weeks, no?). I'm just ready for the weekend. I'm still on prednisone, which means I still have constant insomnia, which means I still am getting about 3 hours of sleep a night, which means I am still exhausted pretty much all the time. What's interesting is how adaptable humans are when it really counts. I was thinking yesterday that if you'd ever told me that I'd have to survive on 3 hours of sleep a night for months at a time, I'd have certainly pronounced it impossible. And yet here we are, making it work on 3 hours a night. As high maintenance creatures as humans are, we are also capable of making our minds and bodies do whatever needs to be done at a given time. The same holds true even retrospectively. When I was in graduate school I also worked full time, so my daily schedule was as follows:
5am: wake up
7am: start work
5pm: leave work
7pm: go to class
10:30pm: leave class/travel home
midnight: go to bed
As I look back on that, I simply cannot conceive of how I did that. I recall it being difficult and involving lots of eating things like ramen noodles or big soft pretzels while on the go. I remember drinking so much caffeine that for years after getting my degree I couldn't stand the smell of coffee. I remember having no real social life since weekends were when I did the homework from the week before. But I don't recall ever feeling as if it was unbearable; yet when I think back I can't imagine how it wasn't.
I think the same is true for health issues. I've recently been in touch with an old high school friend who has had terrible health problems since her early 20's. Each time she was getting better, something else would happen and leave her with damaged nerves, no ability to walk for a while, you name it. And yet here she was telling me about her job, her family and her life in the context of "but I'm otherwise so very lucky and blessed." At each stage of her illness, she has just adapted to whatever limitations became reality, and as a result has maintained the same sunny and forceful persona I always remember her having.
Same with the people on the GVHD listserv I joined. Man, you want to feel like your little diarrhea problem is nothing? Sign on to a GVHD listserv and start counting your damn blessings. Wow. These people are suffering. Their lives are a hassle with a capital ASS. I joined to get some group thoughts on how to perhaps eat something other than bananas, rice, apples and toast without spending a day and a half on the commode. And just to get some sense of when this all might end, what ongoing prednisone and cellcept side effects others are seeing, etc. I've yet to ask my question, however, because it feels so minor. Like, I'm so sorry your lungs are shutting down, your skin is peeling off in painful layers, or that your 12 year old kid's joints no longer function so he's paralyzed, but can we talk lunch menus for me?! And while we're at it, let's play Spot the Listserv Ingrate, shall we?!
I generally am anti-listserv, on the theory that I hate open mics (and the weirdos they attract) and a listserv is nothing more than an online open mic night. But I joined in a fit of despair that I am basically eating 4 food items all the time, mealtimes are depressing, I'm losing muscle mass because most protein sources don't "sit" right with my colon, and I'm just so effing over this whole transplant aftermath (as grateful as I am to be alive to be facing it). And then I read the other messages. I only had to read about three of the ones about kids and I got the message I needed: it all sucks, but sometimes you have the kind of suck for which people would gladly exchange theirs. So perhaps you should be a wee bit grateful that a colon-under-attack is your only concern. And here again, the people on this list are just showing so much adaptability. Can't move your legs? Now you take your grandkids out in your wheelchair. Can't read anymore because your tear ducts are destroyed? You amass a library of books on tape. All of these stories are testaments to the ability of humans to adapt, survive and--yes--even thrive under some pretty crazy circumstances. And I realized that I don't need to ask my questions to feel better about my GVH. I already do feel better. Not because it doesn't suck; it does, and mightily. But because I realize how lucky I am, and also how--no matter what happens--I'm a human (with all of the failings and fortitude the word implies), and we always find a way to make it work.