Arthritis blows, but you know what blows more? Complaining about it. Wallowing and the like. Perhaps, I am minimizing, but I am not. Should the disclaimer come now? I'm not a doctor, nor do I claim to be, but I know my body best (still learning, just like everything else). The rheumatoid arthritis I experience is exacerbated by fear, by not expressing, by taking care of everyone else and not myself, but if it must be narrowed (it mustn't), the best description of what it is—shrinking and bracing simultaneously. Shrinking and bracing come from narrowing my truth and carrying baggage (everyone else's without being asked explicitly) longer than any one person should.
Yes, I've had the, "Why me?" phase. It came shortly after being diagnosed. I was, after all, 17 almost 18 when it was confirmed by a doctor. Prior to the diagnosis, I danced. I ran. I worked out. I could do the splits. It hurt like hell to do any of that post diagnosis, but it hurt more because I was scared, preoccupied with what I couldn't do and what medical jargon and beliefs said with certainty I wouldn’t be able to do, rather than what I could do, which actually was more than I have ever given myself credit. I went out clubbing and dancing for dancing's sake at least 3 times a week in my early 20's—no small feat considering I was diseased, so one would have you think. I don't really believe that now, but you internalize what you're told when you don't know any better. Labels are just compartmentalizations and we are beginning to learn as a culture (it's about time!) how these categories in which we place ourselves just spill over into other parts of ourselves, no matter how much we try to separate. We are complete and everything is connected to everything in and around us, to think we are separate is just madness.
One of my rheumatologists told me that I shouldn't move to New York to study fashion and that I should essentially find a nice, rich husband to take care of me. Maybe he was joking. Maybe, it was his way of showing concern. I was angry for a long, long time. How dare he pigeonhole me as incapable. I had enough self-pity and doubt all on my own. Certainly, I didn't need any assistance from someone meant to help me get better. Maybe, I'm still angry.
The guilt and shame I've carried in my body for so many years, for living in an unpredictable, emotionally volatile environment, for being my own emotional caretaker, for just taking it, for not stating my needs, for following the directions of a scared parent projecting her own limitations on her children, for being her caretaker—I just didn't have anywhere to go with it. It settled in the hinges of this frame, swelling, flagellating. Too scared to speak or move, I continued to take it, never being able to give enough to her or anyone else to ensure safety. I stayed in her dysfunctional world far longer than I should have, but she was my mom and I wanted nothing more than to please her, as I had always done, but my body told me otherwise. You know the general thinking—someone else should be taking care of me, she should be taking care of me, finally. I waited. I waited for it to happen, demanded more and more of romantic partners, some friends, bosses—every and anywhere on the outside I demanded and waited without acknowledging my own needs. I kept giving without facing myself, withering away slowly.
Just a couple of weeks ago, I was photographed with some of my students and I looked at the pictures and said, "That's my body. Gross. Wow. When did that happen?" Then I look at my body and see what I have endured and I am here and that body is beautiful in all its mangledness and I say, "This is my body. Yeah!" I love it even in those moments of surprise and self-consciousness. I can do so much. I dance around the house often. I walk longer than those with regular ole bodies. Yes, there are times I want to throw a jar across the room, because it just should be simpler to open. The most difficult time was after I had my children and had to deal with child proofing and car seats—well, those are all crazy arthritis proof as well and it makes you feel like crap not being able to care for your babies just like everyone else (someone should invent a gripper thingie for unhooking all of a baby's contraptions. I will help you promote it in any way possible. Seriously!). There are modifications in my life, like having to sit next to a bar or a chair to use my upper body in order to pull myself up if I am sitting on the ground unassisted, or having to go down the stairs one at a time, or standing on a stool to reach up high (wait, I'm short. I would've had to do that anyway), but finally I have me, glorious and loving me, taking care of me first before I give to the world. I finally love myself just as much, if not more, than everyone else I love. I pretty much have great love for everyone and the ones I don't, I still find a way to love them too—so, I now extend the same courtesy to myself. Arthritis reminds me that taking care of and loving myself fully is the only way to live. It's like a tuning instrument. If I don't pay attention to my needs, this body knows immediately. And for this, arthritis f'ing rocks (I'd still rather not have it, but I will honor where I'm at)!