“I tramp a perpetual journey.” ― Walt Whitman, Song of Myself
The expected first entry after a long hiatus from blogging is usually an apology from the author. But you know what? I’m not here to apologize. In the past year, I took a full time administrative job, found a biologic medication that works for me, convinced my insurance company to pay for said biologic, served as a PCORI reviewer (twice), started dancing again, and completed my PhD in American Studies with a dissertation on memory, girlhood, and American literature for children and young adults. I’ll save the full story of how all I accomplished all that, while juggling the limitations and crises that come with chronic illness, for (multiple) upcoming posts.
As someone who is now officially in “remission” (which still boggles my mind), I sometimes forget how sick I was, and for how long. This blog forces me to remember, to keep the memories from fading into hazy approximation. My memories of the years I spent suffering (and the chance that I might suffer that way again) power my commitment to advocacy and scholarship on chronic illness and disability. There’s still so much work to be done, so many conversations to be had: about pain, about access to medications and healthcare, about how chronic illnesses are perceived in contemporary culture, and the impact this has on the lives of those who live with those illnesses and the medical research that might treat, or even cure them. I have a lot more to say, and I’m going to say it here.
Those of you who have been following this blog for a while may remember my post about not making New Years resolutions last year. While I haven’t really made any resolutions for this year, except to continue my (un-)resolution from last year of being kinder to myself, I have spent the past few months thinking a lot about food, and sugar in particular. I read Gary Taubes’ Why We Get Fat a few months ago, and it’s really changed my thinking about nutrition. I’m going on vacation next week, and plan to be as indulgent as I like because, hey, it’s vacation! But when I get back, I’m thinking about making some significant changes to my diet, though not for the reasons you might expect.
Those of us with systemic autoimmune arthritis often hear that we are “too young” for arthritis, though we know we are not. If we spoke openly about our health conditions, we would also probably hear frequently how we are “too young” to die. But the truth is that we’re not too young for that either.
In the past week I’ve seen several news stories about the death of 23-year old Sasha McHale, daughter of former Minnesota Timberwolves coach Tom McHale, from lupus-related complications. Then, just in the last few days, I found out that Laura, of the blog Still’s Life, has died of complications from Still’s disease (Juvenille Idiopathic Arthritis). I did not know Sasha, and I wasn’t close to Laura, though I knew her through the twitter #rheum community, so I don’t want to claim that I have any stake in grieving for these two women, except in the way that anyone must grieve for an individual whose life ends just as it should be beginning. And for that I do grieve, as I did for Simone Watson, an Atlanta college student who died from lupus complications just days before her graduation with a dual bachelors/masters degree last spring.
I find myself combing the news articles and memorial posts, trying to figure out what lies beneath the opaque phrase “complications from lupus” or “complications from autoimmune disease.” Did they know this was the end? Or did it come as a surprise to them, as it did to us? I wonder how hard I should be pushing myself, how much time I have left, whether pushing too hard—for my career, for my scholarship—means less time to be in this world that I love with the people I love. I wonder what it is I can offer in return, to make sense of such senseless loss. I’m not afraid of death, but I’m not ready to be done here. Not by far. And I can’t know, but I suspect Sasha, Simone, and Laura weren’t either.
When you spend a lot of time trying to talk your body out of being in pain—or ignoring the pain as best as you can—eventually you reach a point where you stop being able to distinguish your body’s basic pleas for attention. You start to get angry or frustrated or tearful and you can’t tell why. Some minor task goes awry and you become infuriated. You ask yourself, “Am I hungry?—because I don’t feel particularly hungry…” but you eat something anyway. Or “Am I thirsty? I don’t think I’m thirsty, but I guess I’ll drink some water.” And then “Am I tired? Because I don’t feel any more tired than usual. Do I need a nap?” And then you notice the throbbing in your hands—or your feet, or your knees, or your head—and realize, “Oh, right, I’m in pain. Still. Again.”
The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it’s my fault that the treatments don’t work instead of the other way around?