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this blog was is born out of my personal experiences as a young lefty professional and a sufferer of multiple chronic illnesses. i'll get to which particular illnesses i've endured later, since it's not the specifics that i'm most interested in. if you just want a blog about the life of someone with elephantitis or recurrent bowel obstructions, i'm sure the internet can provide you with all the medical porn you want to sate your need for schadenfreude.
i am most concerned with the ways in which chronic illness and disability can be really life-altering, disrupting, lonely, and alienating in any setting, be it amongst gun-wielding christian republicans or punk rock musicians. i started out on one end of that spectrum (when i was like, 11; yes, i was in the NRA at 11) and i'm more at the other end now, but i'm hoping this blog will have helpful advice for those at both ends and all the way in between. at the same time, my specific situation has given me a lot to think about.
first, being young and sick is very difficult. most young people are healthy. profoundly healthy. so healthy it can be maddening that you're so unhealthy compared to them. especially if you have life-long illnesses, it can seem like you're stuck on a totally different, pathetic trajectory than everyone else around you. some people seem to think that youth can cure anything, and don't understand how you can't just use your youthful energy to shake off your condition. the "chronic" part can be hard for people to understand. as in yes, it really isn't going to go away, regardless of what i do, and even when i do feel "pretty good," it's never like when you feel "pretty good." it's hard to convince people that you're really, really not in control. we sit and watch as friends speed their way through degrees the conventional way, while we spend a summer (or year, or two, or a life) in bed. they don't know what it's like to spend months working just to pay for a night in the ER that was "covered" by insurance. basically, young people haven't been around as long, and they're the least likely to have personally gone through what you're going through. i've met incredibly few people my age who have been through some medical shit, and when i do meet them, it always feels good to know i'm not the only one.
i was "closeted" as a sick person for ten years, and only started telling people about my illnesses very recently. for a long time, i felt like people shouldn't be burdened by the depressing or stressful knowledge of what my everyday life was like. i also didn't want to feel like i was holding anyone back by "my personal medical issues." i didn't want to be the person with special needs at the restaurant, or who needed an extra stop on the road trip, or who couldn't come to the show because she had an asthma attack earlier in the day. i didn't want to admit that half the reason i carried a messenger bag was for storage of my pills, inhalers, epi pens, and water to take pills with at a moment's notice. rather than letting people know exactly why i wasn't at band practice, i'd provide no excuse at all or a lame excuse like those of my peers. yeah, i was totally still hungover at 6 pm!
i always found clandestine ways to take care of myself, and that seemed "good enough" for me. then i took new steps to managing my health, and i started to get better. for the first time in my life, i had days where i felt pretty healthy, and a lot more days where i felt at least kind of healthy. i was so excited that it was hard not to tell people, but that involved some degree of revealing what had been wrong with me all along. nothing could have prepared me for the reactions others had to these revelations; it just wasn't the support i'd imagined. sickly life is radically different from regular life, and so healthy people are always surprised to hear the kinds of things i dealt with on a daily basis. some of the reactions seemed really negative, but it was usually just shock. occasionally i deal with disbelief, but most experienced sickos can easily recount the kind of gruesome details that can convince any non-believer. like revealing any other very personal, painful thing about yourself, people who haven't been through it often don't know how to make sense of it, or what to say. my comparison standard had always been my own life (e.g. "am i sicker, or healthier, than i used to be?") so putting myself in comparison with those around me confirmed that it's a difficult, stressful, and sometimes depressing life to lead. sometimes it's good to have that affirmation, but often the reactions others have to my illness are worse than the illness itself.
i was particularly thrown off by the reactions from some of my radical friends. i've always felt at home with radicals and indeed feel out of place outside of the political community. health issues have been a prime concern of activists for a long time, so i expected people to be interested, engaged, understanding, and to have a radical interpretation of chronic illness. in reality, they were every bit as shocked, confused, and unable to comprehend what i'd told them as anyone else. their reactions were even more painful than that of others when it was combined with political judgment. for example, some vegans and militant vegetarians get on me for eating meat. well, i'm allergic to milk, soy, and a large handful of other things, and i live in the south. my options for what to eat that won't make me sick for two weeks are limited, and i have to eat whatever is left over. this usually involves meat for protein.
a lot of my friends are bicycle punks, and i find this to be one of the hardest issues to negotiate. there's only a few slivers of the year when i can bike, due to my asthma. i can't bike when it's cold, when it's hot, when i have seasonal allergies, when i'm sick, or when i've recently had an asthma attack. my food allergies trigger my asthma, so i can't bike if someone's accidentally sneaked milk into my diet in the last two weeks. milk is in many prepared foods, from sliced bread to granola bars to fry batter , so it's hard to avoid any exposure. i think of my car as my asthmatic-privelege (not to mention my class-privelege) mobile, but that's not good enough for some people. i've had to make some amazingly strong arguments for why i wasn't capable of biking somewhere on a given day, and it does get to a person over time.
i understand their reasons for being militant about the environmental politics behind not driving, but what about being advocates for people who are less abled than you are? in much the same way that we're described as a "post-feminist" society (in that women aren't really equal but they've made enough gains that people aren't as agitated) i feel like we're becoming a post-disability society. we've got some ADA protections for people with visible, obvious physical limitations. we care about people with some conditions. the government, your school, your workplace, and your friends will make accommodations for some things that could be wrong for you, but not necessarily what's actually wrong with you. a lot of young leftists want national healthcare, but don't fully understand the need firsthand. when you bring up problems, it seems like they should be on board, like "oh, i can't believe how hard it is for people with your condition to take care of themselves in this society." but often, the connection between your everyday life and their politics isn't made, and there can be a startling lack of empathy. not always, for sure, and i've met many people who have really gotten me (as best they can), and who have been very supportive, but there are times when you feel like your conditions make you less politically viable, rather than more.
the internal conflict of being radical and professional could be addressed on any number of blogs, but being sickly and professional is something that definitely needs more attention. on the one hand, you're more tethered to your job than other people, because you really need the health care. even if it's a job you love, that sense of necessity and obligation can get in the way of your enjoyment of your work. though it's not the case for me, many sickly people have to do jobs that totally suck just for the money and insurance. if you're a radical sickly person working hard for the money and the insurance, expect to have to defend these professional decisions constantly to those more free to pick their vocation. second, if you're sickly and a professional sometimes you feel like a liability. while other people my age take just as many days off nursing hangovers, break-ups, and twenty-something angst as i usually take off to care for my sub-par lungs, there can still be guilt about sick days, or off-days. in busy workplaces where there's always more to do than staff to do it, it can be hard to take the time you need off when you know there are things to be done. also, living with chronic illnesses is really stressful, and can distract from work even on good days. it can feel like life would be much easier without the problems, like work would be perfect if it wasn't for the feeling that your head or stomach was going to explode. work probably wouldn't be perfect anyway, but we'll never know!
so what's the takeaway from all of this? it sounds like a pretty crappy life, right? well, my surprising revelation is that "coming out" as a sick person has been incredibly rewarding. i would have never expected that, but it has been. the biggest reason is that i've become so much healthier since then. i think it's a mix of living in good faith (for lack of a better term), and also giving people the information they needed to accommodate me, when i really needed it. it's better to let people know that you're allergic to milk than to let it eat a hole in your intestines later and throw your sinuses off balance for weeks. also, it's allowed me to get closer to the few sickly friends i have. it's a really difficult life, for sure, but having these connections has been essential to my wellbeing. for every 9 people who are shocked or judgmental, i get someone who has been through some version of this, or who knows someone who has. and finally, by telling these stories, we're increasing people's knowledge of this major life struggle that's actually faced by a lot of people (and that most people will face, sooner or later). it seems almost laughable to think about it in a similar way as coming out as queer or a sexual assault survivor, but in many ways its analogous, and in some ways it is more difficult. there's not a lot of understanding right now, so in many ways we have to blaze this path.
you might ask where the "love" comes to play in all of this, since illness is obviously an odious, hate-worthy thing. to me, the love is part of coming to terms with one's disorders. it's about finding some way to get by and love yourself when others make you feel like you're inferior due to some physical dis-ability. it's about respecting what you've learned from your experience as a sickly person. you may not know this if you're able-bodied, but sickly people are often incredibly bad-ass. and finally, it's also about seeking the love you need and deserve as a sickly person, which can be hard to do, but is totally worth it.
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