“The question is not how to get cured, but how to live.”
― Joseph Conrad
Once upon a time, I was somebody. I was strong, both physically and mentally, ambitious, successful, powerful, and no one in the world could stop me. Or so I thought. Turns out, the only one strong enough to kick my ass? Was me. Whodathunkit?
I still remember in December, 2011, having to leave work and rush to the hospital, in agony to the point of passing out. I’d had a rough weekend, sick and in pain, but I chalked it up to me being a wimp, and told myself the pain wasn’t really that bad, although it had kept me up the night before. I lasted less than an hour at work. Arriving at the hospital, I was immediately doped up on IV pain meds, and when my blood work and CT scan came back, it was determined that my gall bladder had burst. Yeah, pretty much blew up in my chest, sort of like that scene in Alien. You know the one. But it was all inside of me, instead of having a xenomorph baby rip out of me, permanently etching me into the medical annals.
Over the course of two weeks, I underwent multiple surgical procedures, was unable to eat or drink anything, had a litany of IV antibiotics flowing through my veins, and learned that multiple organs had been damaged when the gall bladder, full of lovely digestive juices, decided to go all suicide bomber on my guts.
Fast forward almost six years: my digestive system has never recovered, and never will. My pancreas, liver, biliary tree, and intestinal tract are damaged, function insufficiently, and will never be “normal” again. I’ve since had other problems come a-calling, things that were apparently lying dormant, but the bodily trauma of the ghastly gall bladder released the kraken. I have an autoimmune disorder (which has yet to be correctly identified); degenerative joint disease affecting my entire spine, knees, elbows, and shoulders; fibromyalgia; a few other fun things that aren’t as big a deal as what I’ve already listed. Basically, I’m in a lot of pain, all the time. I take a ton of pills (I did the math once; over 600, every month), use a lot of OTC topical ointments and creams, as well as other fun things like stretches, heat/ice therapies, rest when needed, etcetera.
It hasn’t really been a fun journey, but I feel like that’s an extraneous statement, at this juncture. I say all of this because sometimes, it needs to be said. And here’s the kicker: I don’t “look sick.” My days are spent determining whether my energy and bodily ability to keep moving should be spent showering, or washing dishes. Putting on some makeup, or running the vacuum cleaner. Every decision I make has to be weighed out, and something has to be sacrificed. Do I want to go hang out at a coffee shop with my best friend (by the way, what I’m doing right now), or do I want to wash two loads of laundry? Should I ignore the fact that my dogs need a bath, so that I can go to see a newly released movie? Impossible decisions are impossible. Hell, some days, my body makes that decision for me, and I’m stuck in bed. For a day, or two. Or three weeks. Yeah, that happens.
I’m 36, and have a permanent disabled parking plate, I walk with a cane. My doctor is on my ass to start using a walker, but vanity can be an ugly beast, and I refuse to do that. Yet. When people find out I’m sick and disabled, I usually get a reaction of pity, which elicits a response from me ranging from amusement to annoyance to just plain pissing me off.
I had a regular doctor’s appointment just the other day (I have multiple doctors), and I had to go to the lab to get my blood drawn, which happens every 2-3 months, to check all of my systems and see if we need to be paying attention to something else. I’m good with needles; I’ve had more IV’s than I can count, and enough blood draws to make any vampire happy. I’d left my cane leaned up against a table, and a lab tech brought it to me, “Is this yours?” I chuckled and claimed the cane, then proceeded to say that I don’t know how the heck I manage to still leave it places, when I’ve been using it for years. The phlebotomist drawing my blood looked at me, and her face fell. “You’re so young to be using a cane!” I explained why I used it, and I swear, this woman damn near cried. Luckily for me, it was amusing. This time. But being looked upon with pity sucks sometimes. Who wants people to pity them???
Most days, though, I feel something resembling normal, at least in my head. I’m stubborn, see, and I’ve had doctors tell me on multiple occasions that I was going to die soon. Psht. Shows what they know. I don’t just give up and die. Granted, some days, I give up and cry, but mostly, I’m stubborn. I ignore (as best I can) the aches and pains and muscle strains I’m feeling. I ignore when my skin is on fire, or when I can feel my vertebrae grinding. I have shit to do, man. Who has time to be sick and broken? Not I. And when I do finally have to rest, I’m angry at myself, and my body, for betraying me. For not knowing that I need to dust today, or that I wanted to go visit my mother, or that I’d committed myself to doing a favor for a friend. Some days, I hate my body.
Some days, I hate my body, true enough, but most days, I try to appreciate what my body can still do. I try to love my body when I gain 80+ pounds because of steroids, and forced inactivity. I try to love my body when I’m at a baseball game with the bestie, and I have to stop getting up because my leg is completely numb. I try to love my body when my little sister has to come over to my house every other week to help with some of the deep cleaning in my house. I try to love my body when I can’t move, and I’m sobbing, and I have to be half carried to the car, and then to the emergency room. I try to love my body when it’s really hard to do, because isn’t that what love is? Love happens even when it’s hard, right? Or, especially when it’s hard. And lord have mercy, sometimes, loving my body is really damn hard.
Some people in my life try to give me hope that one day, I’ll be better. Others try to ignore or pretend that I’m perfectly healthy, because they aren’t sure how to react, I’m sure. Honestly, the reactions of others aren’t really too important to me. I know who I am. Sure, it does affect me when people pity me, or don’t believe me, or what have you, but not too deeply, most days. The people who matter know, believe me, trust me, and support me. I’m good with that, and grateful to them. Not everyone is so lucky, sick, disabled, or not.
I had to leave a lot of dreams behind when I realized this wasn’t going away, and I’m not going to get better. Frankly, the things I’m dealing with are progressive, so I’m just going to get worse. I’ve had to relearn who the heck I am, as a person. I’ve had to reframe my goals and desires, and temper my expectations. I’ve had to comfort those around me, on multiple occasions, and remind them that I’m okay (even when I’m not). I’ve had to smile when I want to cry, walk when I want to collapse, do housework when I just want/need to sleep, go to the doctor/hospital when I want to go on a date with my husband, rest when I want to go to a bookstore with my bestie, cancel when my kids want to hang out and do something. I’m not always happy about it, and I don’t always want to accept this, but I do, because I don’t have a choice. I accept this, and I smile, and I refuse to not be happy. I’m stubborn, but I’m also a good person and I deserve happiness just as much as the next person; being sick and disabled shouldn’t negate my right to have happiness.
My perspective has forever been altered. I view the world through a broken lens, and while I can still see, things are fractured by that damn crack in the glass. I’m grateful for the proverbial sight, because some people don’t have that anymore, but sometimes, the crack in the lens is a hindrance. While I try not to complain about it, and recognize that others have it worse off than I do, it’s okay for me to be pissed about the cracked lens from time to time.