4:32am June 24, 2013

I can’t sleep so I’ll write about why I hate medical ideas and language even though I need them.

I am tired of something I don’t even know how to name.

People are always demanding diagnoses. More specifically, they want more than just even a list of diagnoses, which is hard enough.

They want explanations of each and every thing I can’t do, broken down by diagnosis. Worse, they want everything to fit their ideas of what each diagnosis should behave like, even if their ideas aren’t the same as how the condition actually can work in real life.

And I’m getting tired of it all. All the damn explanations they want. Explanations that nobody could rightly give.

And then refusing to accept some explanations. Because they think for instance that there’s only one or two life paths for autism to take, rather than hundreds, and autistic catatonia (a progressive motor planning condition affecting only autistic people) isn’t even a thing in their world even though it’s a very dominant thing in mine, and I am reasonably classic for someone with a mild to moderate form.

And then they want to know what is autism and what is autistic catatonia, as far as how they affect my skills. Don’t you get it!? Autistic catatonia is not separated from autism. It is basically its own form of autism, as far as I can tell. One where perceptual and motor planning skills become more severely affected with time instead of less. You can’t separate it out and pretend it’s not autism, that is just a superficial add-on instead of something that goes down to the core just like the rest of autism does.

And it’s not just the descriptions that are starting to come out in the medical journals. Those may enable me to be diagnosed, but they do not speak to the full experience. People with autistic catatonia have gotten together and many of us have extremely similar experiences. It’s not just physical movement affected, but also the movement of thoughts and perceptions. Often our losses correlate with gains in areas nobody bothered to look into. The medical journals tell only the most superficial sketch of our stories, and they sure as hell don’t speak to our souls.

Worse they have their own agenda, such as a man who appears to only be into studying it because he will study anything that allows him to make a case for involuntary shock treatment and catatonia and depression are the main two things left that people are allowed to do that for. So he studied catatonia and depression, plays up the catatonic aspects, downplays the Parkinson connection. Even though catatonia and the Parkinson family have plenty of overlap, just one got claimed by neurology, the other by psychiatry, even though catatonia is primarily motor and not psychiatric.

And all of that is just a sidetrack, too show you how complicated it gets even in one diagnosis. I have over twenty, although some of them are just names for symptoms because one of my main conditions remains undiagnosed, another is diagnosed but the research on it is scant.

Oh also what I hate.

“So what is your one underlying condition?”

Which one?

“The main one.”

WHICH ONE?

And this from medical professionals who should know it’s more common to have many conditions than just one. That they are not necessarily all related. When I stay in the hospital, my roommates are usually other people with many conditions. Yet for each of us they insist on seeing only one at a time even if it’s life threatening to ignore, say, the interactions between pneumonia, gastroparesis, and possible hereditary myasthenia. Or whatever the hell it turns out to be. Because coughing from pneumonia and retching from antibiotics and gastroparesis, weaken muscles, people. Time and time again we are treated as if we only have one condition when it’s not even debated that we have several.

And all of what I just told you is just an introduction really. It doesn’t get you to the most important part.

Which is that I only have one body. I do not experience myself as a large number of conditions added together. I experience myself as one unified whole.

Taking about this condition and that condition and what they each do, that’s a sacrifice I make. A sacrifice to the realities of language and culture and medicine. But none of those realities are my reality.

In the reality I live in there is only life and how I experience it through my body. There is no chopping myself up into pieces for the sake of language or medical science. There’s just me and life and that’s all.

I feel pain in my back right now that’s distracting me from writing. I don’t give a shit what condition causes it, it’s there, I experience it, that’s all.

I am so sick of the medical profession claiming chunks of my body, of my life, without even asking my permission. Without thinking what it does to my mind to even attempt to think and communicate on their terms.

But I need them. I’d die without them. I don’t have the luxury of divorcing myself from medicine, or even from mainstream medicine, because there is no alternative that will allow me to live. I need surgeries and medications and equipment that only they can provide.

Like I wouldn’t be alive without the feeding tube and every nausea medication they could find, combined. I would be constantly throwing up, and I would be aspirating reflux if the stomach fluids that have nowhere to go so they just build up until they end up in my lungs. So blue I have one tube for feeding one tube for draining fluid.

And that means that I have to live with words like gastroparesis. Words that help me get meds and adaptive equipment. But words that hide the way I feel.

Gastroparesis is a tidy technical word. It doesn’t tell you what it feels like. It doesn’t tell you what it feels like to feel constant nausea.

Even the word nausea feels wrong in my hands. Nausea has twenty different sensations and experiences all wrapped up together just because they are linked to what it feels like when your food wants to escape in the wrong direction. They blend together and separate apart and do thing no doctor had ever come up with words for.

Pain is another word just like nausea.
Growing up with receptive language problems, my experience of the world is not as shaped by language as most people who understand it well (whether or not they speak, it worms it’s way into their brains until they forget many things about what experience feels like outside of it).

And that means that I never learned that those dozens of sensations are all referred to as pain no matter how different they are.

But pain, or rather all those sensations, is everything about how I relate to my body. There is no body part that ever doesn’t hurt. But they hurt in so many ways it’s taken so if my 32 years to figure it out and I’m still figuring it out that people call all these things one thing.

I can never answer when the doctor asks where does it hurt. I make things up. Or I get mad at them and they don’t understand.

My whole body is like a huge dynamic network of pain signals coming in from everywhere in dozens of little nuances and you want me to say where it hurts. I sometimes laugh at them. They look puzzled.

My body has always been like this. Pain is one of my first memories. Pain like a sunburn everywhere all the time, pain as light as my skin and as deep as my bones, until I think I ran from my body just to get away from it. My daydreams were of fading into a nothingness where the pain couldn’t get me. This was normal. I had no means of comprehending I should tell anyone, until a seizure medication made some of it go away. Maybe I babbled a few words about summer, meaning sunburn, meaning my only reference point for intense neuropathic pain, but nobody knew what I meant.

I’ve learned that I’m very connected to my body. More seemingly than most people. That’s on a deep level. On a surface level sometimes I look disconnected. But I’m not. I’m deeply physical.

So deeply physical that these abstract intellectual descriptions of my body hurt like a knife. Hurt the way surgery hurts without adequate anesthesia or post operative pain control. (Having them cut a hole into my stomach without the local anesthesia working was one of the low points of my life.)

How can anyone say that the delicate yet intense spiderweb mesh of burning on the surface of the back of my neck deserves the same word as the dull yet intense ache deep inside my back? How do people decide these things?

Medical terms are always putting together things that are different, or separating out things that are the same.

My life refuses to be held together or pulled apart by medical terms.

But who is going to hear it? All anyone wants are diagnoses and symptoms to explain everything. And endless explanations that in the end are about words, not experiences. Hoops to jump through. Either for medical treatment, or for people to accept that my experiences are real.

Because people believe in words and stories, not experiences or reality. If something fits into the stories they believe, they accept it as real. If it doesn’t, they dismiss it. Most people never in their lives drop it if their stories for one second to wonder about it. Some of them have even created whole philosophies based on the idea stories are all there is, however ridiculous that sounds. I have stories too but I can get out of them sometimes. I’m told that makes me unusual.

But the difference between stories and reality is its own kind of pain.