It’s a factor in my every day life. I woke up this morning and the first thing that happened was that my arm twitched; that is, it moved about six inches in a swift jerk and then returned to its prior position. I sat up and felt the muscles in my legs cry out in pain. I pulled myself up and out of bed and took very hesitant, slow steps to the bathroom, and my sense of balance was off. I woke up feeling tired and unfocused. My joints hurt and if someone called me up today and invited me to go for a walk or something I’d turn them down.
It’s also something that a lot of people know about me. I blog about my illness, I talk about it, I work it into my classes when it’s appropriate. For some people, it’s the one thing they know about me. They may not remember where I’m from, or who my partners are, but they remember that I suffer from significant health challenges. I have friends that I won’t hear from for ages, but when I post that I’m in the hospital again, they will send me well wishes. It makes me feel like I only exist in their world when I need their prayer. Like being sick is the only time I matter.
The concept of Del-as-sick-person is pervasive. This year, I’ve had to fight with two different employers to keep them from cutting back my commitments because of my challenges with wellness; these situations happened even though I wasn’t the one who introduced the idea that I may need someone else to limit me, to make sure I’m not overcommitting myself. I have friends who offer help in ways that makes me raise my eyebrows: there are plenty of things I am fully capable of doing on my own, and it’s of the utmost importance to me that I continue to do them as much as possible.
Now, this is as much my fault as anyone else’s. I’m the one who decided to write a blog focused on disability and chronic illness, and since most of my social contact happens online, it’s the only thing many of my friends hear about my life. They don’t hear the stuff that isn’t germane to this blog, unless maybe they read my Facebook statuses from time to time. In an odd way, I havebecome Dying for a Diagnosis, to some.
This experience is not mine alone. Many people who suffer from a chronic illness or disability find that their identity in other people’s minds (and maybe even their own!) starts to meld with the illness. We become “that aunt with fibro” or “the next door neighbor with MS”. As if we didn’t have an illness, we’d be a faceless member of the human mob that no one notices. This becomes much more prominent when you start using mobility assistance; I know I became “that guy in the wheelchair” pretty damn fast once I started using it in public; and I don’t even use it all the time!
There is so much about me that functions perfectly fine. Even though I have some cognitive challenges, I am still able to participate in heavy conversation. I am still able to write clearly and concisely. I have a wicked sense of humor. I am still able to discharge most of my shamanic duties/obligations. I can still get my freak on. I still attend rituals and participate as appropriate. There is a depth and breadth to human existence that I am still a full participant in. And I do my very best to make sure I dive into those human experiences with both feet and a whole body, not to surrender and hide and wait to die.
There are times, mind you, where this “diving” hurts like hell. But I live with a general refusal to allow my pain to dictate the sole terms of my life. In a similar fashion, I do not wish to be fully defined by the fact that my body doesn’t process “life” the same way someone who doesn’t suffer from chronic illness does. I don’t want my eulogy to be “Del was sick, Del suffered, and Del died.” I want there to be crazy stories of adventure – risks taken, challenges accepted, art created, words weaved, etc. I want to be known for all the things I pushed myself to do, all the wild and wonderful situations I created for myself. I want people to remember me as the person who was there for them, who walked next to them when they were scared, or alone, or confused, or seeking a new lot in life. I want people to think of me as being a good and whole Del, not a broken and mangled one.
I know it sounds all PC, but that to me is the difference between “disabled person” and “person with a disability”. One is a definition: “Del is a disabled person.” It attempts to sum up all of my embodied experience in a single descriptor. However, “Del is a person who happens to be disabled” states my personhood first and foremost. It’s like the sentence can go on from there, “…and who also plays the trumpet.” or ” and who gives the best advice” or “and also worships Loki”. There are lots of other details about who I am that have nothing to do with being sick.
It’s of vital importance that I set the precedent here. That I do not allow my illness to define me. I must remember to not lead with it, to add it as one more flavor in the Del stew. The fact that I struggle with my health is a pretty big proportional part of what I do with my time, but it is not a big part of who I am. There’s a world of difference.