Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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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.

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