Sick/Not Sick: Illness is Not Identity

May 30, 2012 at 8:03 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Uncategorized) (, , , , )

I am sick. 

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!

I am not sick.

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.

8 Comments

  1. tif said,

    I needed this reminder, I think you know why, thank you very much

    • Elizabeth said,

      In the diabetes community, people have started using “PWD” (for “person with diabetes”) rather than “diabetic” for similar reasons as you’ve detailed here.

      I won’t even go into how much I wish “people with mental illnesses” was used, rather than “the mentally ill” or worse, “crazies,” but you could probably put it more eloquently and coherently than I could, anyway.

      • Elizabeth said,

        Sorry, that reply was meant for Del, not tif!

  2. jaythevegan said,

    First, you play trumpet? How cool is that? Pretty damn cool in my book.

    When I think of you a few key things come to mind.

    I am thankful that you posted that you were developing a class for bigger folks in a group that I was a member of. I am so glad I was able to facilitate bringing you to Hartford and into my life. Upon meeting at the diner when you arrived I met a fascinating guy. How many people go to seminary and clown college? I mean seriously… AND now I find out you play the trumpet. Tell me MORE…

    The funniest thing that comes to mind is the introduction to the class list you emailed me to pick a second class for the weekend you were here in Hartford. “Del is an experience” will be forever seared in my brain. True awesomeness!!!

    The biggest part of my definition of who Del is… The awesome guy that really started me on my path to find myself. You saw something in me at a very deep level and you gave me some wonderful gifts that helped heal scars new and old. Upon our second meeting you changed my life by the light of the flames of the amazing fire.

    Your medical conditions are not tied to your identity for me. They just happen to be a fact of life. It’s the hand you got dealt and I am sorry you have to deal with it. You don’t let the medical shit dictate your life and your participation in the lives of others. Sometimes accommodations are needed, but EVERYONE needs accommodations in one way or another. People that have children need accommodations all the time, and no one (well almost no one), gives their needs a second thought. People need time off work because a child is sick, or because they are in charge of costumes for their child’s dance recital. Those accommodations are “normal.” WHATEVER!!! An accommodation is an accommodation. The are no such thing as good and bad. The simple definition of accommodation is: “The act of accommodating or the state of being accommodated; adjustment.” There is no judgement in that definition, an adjustment is an adjustment, plain and simple.

    Clearly I could go on and on about accommodations. My mother was instrumental in implementing the Americans with Disabilities Act for all state workers in CA. This has been a hot button issue for me for decades.

    You are not your illness, nor is your illness you. I have ableist bullshit!!!

    You will always be Awesome dot Del to me :-)

    JJ

  3. doesithurt said,

    Reblogged this on Does it Hurt? and commented:
    I thought that this was a wonderful way to define our reality and wanted to share!

  4. What about it? « Dying for a Diagnosis said,

    [...] it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave [...]

  5. The Three Sided Coin | Dying for a Diagnosis said,

    [...] because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have [...]

  6. Luther said,

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    me personally. It’s really useful and you’re clearly really knowledgeable in this region. You possess exposed my sight to various thoughts about this kind of subject matter together with interesting and sound content material.

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