My dancing body. I pause at the barre, my stomach cramps and fondues are too much for me to handle. Close my eyes… gurgle, gurgle… relief. I can keep going. My weight fluctuates. One week I have no appetite. I drop five pounds. The next, I’m ravenous and gain it back plus some. I eat when I want to, because in an hour it could be a different story. Be careful though. Don’t want your rumblings to disturb the other students. Maybe just a light snack. Nope, bad idea. I get weird looks from the other students. I grimace and smile, always making light of it, got to keep other people comfortable. Internally, I curse Myrtle. That’s my colon. Yes, I’ve named her. Like Moaning Myrtle, the ghost from Harry Potter who lives in toilets? I got the idea from a book. Myrtle doesn’t care for tights and a leotard. Too constricting, puts pressure in all the wrong places. Grumble, grumble…
Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease. Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.
Coolio
ReplyDeleteHi Maggie - 'tis enuf to say I live in Bolivar and I know your mom.
ReplyDeleteThis is an amazing blog! I'm sending your url to a long-time friend who has a story very similar to yours - he doesn't have Crohn's (I can't remember) but something like your disease diagnosed at about the same time in his life. I hope he responds.
I'm just part of the local community who is very proud of you and your determination! Life is a process for all of us, you know? A friend in Christ. Carol Winans
Carol - Thank you so much. Life truly is a process, and everyone's processes are just so different! Thanks for thanking the time to read and respond! I really appreciate it.
ReplyDeletei have a very severe case of crohn's my current flare up it going on 6 months now is my most severe my whole small is inflamed. i want surgery. would be my 2nd surgery however they can not transplant a whole small so i got to wait on the meds to kick in. i have to go part time at my job and have given up my whole life. i am also a mother of a 13 year old son. so how do you do it?
ReplyDeleteI am so sorry to hear about all that you're going through. I have an amazing doctor who's slowly helped me find the right combination of medication. I would certainly not be in the shape I am right now without his help. I am currently taking Humira (twice a month by injection), Imuran (one pill daily), Apriso (four capsules daily), two antibiotics (I'm prone to infections and the medications I'm on lower my immune system to keep it from attacking me. They work great, but that also means that my body can't fight infections or viruses.) and iron/vitamin supplements made specifically for Crohn's patients which I take daily.
ReplyDeleteBeyond that, I have an incredible support system of friends and family, without whom my life would be unbearable at times. I take everything day by day, even minute by minute. Eventually, there will be times when you start to feel better, and slowly those periods will grow longer. It takes a long time and it is hard, but it does get better once you get through the truly frustrating process of finding the right meds.
I don't know if this helps. I hope it does in some small way. If there is any advice I could give it would be to never blame yourself for your disease. I distinctly remember the first time someone said that to me (it was my new doctor) and it completely altered my thinking about my body and my illness. Hang in there.