Arthritis Blows

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)!

Mom's Decay

We entered her house and the smell of ammonia that only occurs when litter boxes are so full that they're almost non-existent, when the entire house becomes a breeding ground of piss and shit for cats and kittens -- it hit and stung. Perhaps this should have induced tears, but it didn't. I just needed to cover my nose and mouth, take periodic breaks to go outside, inhale fresh air. Much of my life with mom was spent this way. I braced, covered, and ran to get something fresh. The slow permeation of her fuckedupness enshrouded every inch and molecule of your life. It was pervasive and hard to define in her presence -- never sure what was happening, but you knew it was all consuming and that it would take years or longer to unravel.

We walked in and there it was -- nothing but decay, chaos. I'd seen enough of those shows about hoarding to know that I had just walked into my mother's own version of it. Her bedroom most striking, awful. The clothes she wore dirty, cat pissed, shat and puked on, smelly, food caked, moldy. Piles of them scattered around the room in cardboard boxes, around the floor, on the shell of her bed. We walked in -- our intention to clean and prepare the house for sale, but it was apparent the house would not sell and if it did, there would be no way to make the original mortgage. The damage -- fire scorched walls and layers of filth placed it far below market value. The worst of it were the holes in her mattress -- food discarded or forgotten about and ignored in the room, never made it to a garbage can. The room was the garbage can. Food everywhere among the dirty clothes, shit stained bedpan, the mattress... The holes in the mattress and box spring gnawed at by mice and rats or maybe just many mice, holes that took time. There are things I did not want to believe could be possible. I imagined these mice eating through her flesh, engorging themselves on the open wound from surgery-number-infinity, her decaying body -- she unable to move. I cannot imagine how she could lie there and not be affected by what occurred day after day in wreckage and filth and the dead of continuous numbing, but then again, she never bathed and would lie in her own shit, surrounded by the droppings of cats and mice and rotten food. Everything created from waste -- a waste. How does this line get crossed? She killed herself by not living. She remained still. A stagnating avalanche.

Walking into her house in this condition was only the second time I'd ever seen it so bad. She did a good job concealing her inner pain, when the daughter who "made it" would return home for holidays, the mess was mostly cleaned up. There would still be signs that cleaning didn't occur often like a thick, dusty, no longer used cobweb in the upper recesses of the bathtub or a pile of dust and pet hair under one of Alex's stuffed animals. The most obvious sign would be a dog hair or more in the holiday dinner or fudge made only for special occasions. But this wasn't a return home for Christmas or Thanksgiving -- this was for the final stage of her death.


Doctors didn't expect a woman to suffer from a typical ailment common to men, probably why they diagnosed her with bursitis of the hip. Never mind the facts of her hard living, 40+ hours a week, 3 packs of cigarettes a day (in her defense, they were light 100's -- do they even make those anymore?), a weekend warrior of the disco lounge at the Pasadena Holiday Inn, conveniently located next to the ice rink behind the civic auditorium on Green Street where I spent much of my weekend skating, learning the foundation moves for more elaborate spins and jumps. During those hours and days, my sister would be somewhere else -- I still don't know where, and my mom at the bar, gin and tonic in hand, Winston Light 100 dangling from the other, the beginning stages or perhaps further along than I understood, of self-destruction in a woman who still had a spark and kindness in her heart, to the woman who died. Her death, a thirty plus year process of pretend living, of masks and smiles and booze and hospital visits, of life altering sickness, of becoming a walking corpse. Her visible decay began when I was ten, when nothing was sure and when the illusion unhinged. She began an innocuous canceling of plans and simple breaking of promises. She began to withdraw.