Shall we get all hopeful and starry-eyed for a second? It is my style, after all. Let’s talk about how my life has changed, in positive ways, since I have become….drumroll…disabled. Let’s save the definition of “disabled,” for a later post. I bring this up, because several weeks ago, someone in one of my groups, actually asked this, as a serious question; they wanted to know, what positive things had come from their “diagnosis?” Furthermore, they wanted to know what they were grateful for, about being diagnosed. This question still raises my hackles.
I mean, whoa!? Grateful!? I’m not fucking grateful to be diagnosed with a debilitating, degenerative condition that has robbed me of my career, countless moments with my family and friends, and has cost my loved ones more moments of joy than I can count. But wait, this person was looking for a Hallmark card response, like “It brought me closer to my loved ones,” or “it reaffirmed my faith,” or some bullshit answer like that, I assume.
The truth is, that Chiari has strengthened my marriage. My marriage was pretty solid to begin with, and if it weren’t, I don’t think it’d have survived. Having faced chronic illness, especially one that went through a brain surgery, I can pretty solidly say, that I doubt a rocky marriage would survive a similar situation. But, a loving and supportive couple cannot help but grow closer, when they are both scared, and lay awake nights, afraid to see the other for the last time. When you truly are afraid to blink, or close your eyes at night, because you are afraid it’s the last time you will see your loved one, it’s impossible to say that this experience hasn’t brought us closer; but I won’t say that I am grateful for it. I chose him because I loved him; I didn’t need this to remind me of it.
I also didn’t need to be sick, and to have my career essentially taken away, to know that I loved it, too. I missed my job when I was on summer vacation, for cripe’s sake! But I’m supposed to thank, or appreciate Chiari for teaching me that lesson? Ummm, okay, gee, thanks Chiari, you sure did teach me to “appreciate” my job.
Wait, no. I take that back. Instead, fuck you. You embarrassed me in the last weeks of it. You made me drop markers while I was writing on the board. You made me so dizzy that I had to steady myself on a podium for many of my lectures, instead of walking around the room, animatedly, like I normally do. You made me have to sit down to talk, SIT DOWN! How embarrassing. You made me have to call in sick. You made me have to stagger emergency room visits, so I wouldn’t be too high or hung-over on ER drugs to work. You made me sick, too sick to do the job I love, effectively.
Then, when it got really bad, you made me have to explain to a room full of eighteen year-old kids, what Chiari is. Humiliation: thy name is that moment. They were bewildered, and I was ashamed. They were worried and scared for me, but also didn’t know what to do. They were afraid I was not up to being a teacher, their teacher, and who could blame them? Maybe I should be grateful for that moment, the moment when after years of professionalism, a student said, “what will happen to my grade?” when I was worried about dying.
But, it’s not all bad. I concede. You did teach me new ways to be happy. A person can only wallow in the self-pity of what they’ve lost for so long, before they fall apart. It sucks to sit around and be sad that they aren’t at work. Or, they can only lay on the couch and be bummed about not being at the playground with their son, for so long, before they do something about it.
So, Chiari, you taught me to stop fucking around with what’s left of my current “life,” as it stands now (I refuse to believe that it is permanently going to stay this way). I may sit around in my pajamas many days, wearing an ass-groove in the couch. But, I do not just sit.
I blog. I paint. I read. I write. I work. I teach online now. I volunteer, and I work, via telecommute. I work harder now than I did when I worked. Chiari, you taught me that I’m not done, just because you made me sick. You taught me that a person is only done when they say they are done.
I may have days where I never get out of bed, and that’s fine. It just means that my to-do list is flexible. And, that’s okay. You didn’t win and you won’t. I may not put on my wardrobe of pretty clothes and makeup much anymore, but I still have a life; it’s just different now.
I sometimes feel a little foolish, because my husband will come home and I greet him at the door, like a child, brandishing a painting I’ve finished that day, excited to see how proud he is of my new project. “Look! Look! Do you like my project!” But, I made that. I’m creating. I’m doing. The ass print groove I’m wearing in the couch speaks for me, but it’s not just from sitting, it’s from doing things with my time, it’s just that it’s from my cozy little corner of the universe that happens to be situated on a very comfy couch.
So, am I grateful for Chiari? No. If I could give it back, I would in a heartbeat. I’d throw this stupid thing back to the hell it came from. I’d trade it for every “positive” experience, every happy memory, every wonderful thing I’ve learned about my friends, all of it. And anyone who tells you they are grateful for the stupid journey (gag!) that this has sent them on, for the lessons this has taught them, for any of that bullshit, they are lying to themselves, or they are hoping to get some kind of self-help book contract. No one wants to get sick; and even once they are well, no one is grateful for it. I’m not grateful for continuous pain meds and for the lingering, lifelong effects of being better, no one would be.
But, it’s the hand I’ve been given, and I’m making the best of it. Because I’ve seen the alternative, which is to wallow. Hundreds of comments a day on comment boards, complaints all day, convincing yourself that blinking too much is related to your condition, or that every doctor you see is out to get you. Instead, I chose to find a way to live that doesn’t revolve around having Chiari. I chose to find a way to live that revolves around things I love and enjoy, making room to accommodate being sick, so I can rest and be well. That doesn’t mean I don’t have days where I don’t shake my fist at the sky or gnash my teeth, but I’m figuring it out.