This Body isn’t ME

Do you feel like your body belongs to you? Like the bits and pieces that make it up, the various fluids, viscera, muscle, skin, and so forth are a part of you and who you are?

Do you feel like your body and you are the same thing?

I don’t know what that’s like.

My body, while being yes, something I inhabit and something that can be used to identify me, it doesn’t feel to me like necessarily a part of me. Though I suppose I am a part of it.

I’m not necessarily talking about dissociation, though yes that’s a part of it, and I recognize the description of your body as being a costume or some sort of vehicle that you operate is a part of the definition of dissociation. It’s rather that in a real sense my body has been my antagonist for most, if not all of my life, really in multiple ways.

I’m sitting here thinking about all this after finding myself unexpectedly triggered by a strange conversation with someone in which they described the idea that having your blood pumped through a machine that filtered out parts of it before returning it to you made the blood no longer theirs, but a foreign entity. This person doesn’t have religious beliefs that suggest this, this wasn’t informed by any ideology but their own thoughts and anxieties with regards to donating stem cells. It wasn’t even in reference to a procedure they were being forced to undergo such as say dialysis, but a voluntary one.

There was something about that statement that left me feeling like I had been jerked out of the moment violently so that while I was still technically standing there as a part of that conversation, I was also standing apart like in a glass box. I mumbled something barely coherent, a desperate attempt to try and put into words some vague idea of what it was I was feeling, which to be honest even I wasn’t sure in that moment. I mumbled “Ableds are weird.” Which was of course taken badly, and led to me being yelled at, at a moment where I can barely figure out what is currently happening around me.

I left the situation and was overwhelmed by thoughts screaming at me.

My body has never belonged to me.

Throughout the years, I have had litres of blood taken from me on a regular basis, not even to diagnose me but just to make sure my body isn’t quietly hurting me in some way.

Every six weeks, I have biological material flooded into my veins for the specific purpose of trying to stop my immune system from destroying my body. Of almost literally tearing it to shreds.

I have staples holding pieces of my guts closed shut from where they cut one of my organs out of my body, by their own admission without being sure that it would actually solve the problem.

They took out my gallbladder because it was the only course of action they could think of with the potential to stop my pancreas from on at least a yearly basis over the last several years, trying to digest itself in a painful condition known as pancreatitis. They did this, because despite finding no evidence of gallstones, gallbladder sludge, it was still the best explanation of why I kept getting it since I had come up negative for it being autoimmune, chronic, or caused by drinking (since I barely do), or my remicade since I had had it even before starting remicade. They told me it was sort of a Hail Mary before the surgery and frankly I agreed with it, because even I was that desperate. So far I haven’t had pancreatitis again so either it worked or it’s placebo and frankly I don’t care which.

I’ve been cut into more than once. It will happen again.

Whenever my crohn’s flares, I run the risk of needing surgery. Of having parts of my bowel die. Of fistulars and abscesses.

At any moment, I could find myself in need of blood transfusions, because too much of my own has left my body. Or I was unable to adequately get the iron I needed to sustain necessary levels.

At some point in the near future, they will cut into me and cut off pieces of my bones, and replace them with artificial ones.

I am kept alive by outside biologics that fight parts of my own body to keep it from killing me.

This body doesn’t belong to me. This body isn’t me. Its what causes me pain. It’s what is used to hurt me.

This one time, I was having a conversation with my dad about some peculiarity of being on prednisone and how it interacts with my anxiety and PTSD. Prednisone can cause a spike in heart rate, blood pressure, and so on. My brain however, interprets those spikes as being the result of a threat and this triggers anxiety and hypervigilance. Now the part of my brain that’s rationally in control realizes that I’m not currently in any danger or under attack in any way. However, there is another part of my brain however that still keeps repeating, somethings wrong, somethings wrong, somethings wrong. It’s almost a type of chemically induced cognitive dissonance.

I was trying to explain it by saying that it was like having a crying toddler in my brain. Now I could try to go to the toddler and explain to them that they actually have no reason to cry but in the same way that that likely wouldn’t work with a real kid, it doesn’t work like that with the crying kid in my brain. So I have to come up with a way to make the toddler feel safe and comfortable despite the thing that’s making it feel upset.

At which point my dad interrupted me saying that that didn’t really make sense because it’s still my own brain.

For a healthy abled person, it is probably difficult to understand.

With the exception of being sick, they have relative control over their body. If they exercise they get stronger and more fit, if they eat healthy they feel good. Even when they get sick, it’s the result of foreign invaders that are causing harm and which need to be fought off. There’s a relatively clear cause and effect. I’m simplifying of course but in a general sense it’s true. They can trust their body to react in predictable ways that can be explained relatively easily, it’s hard to understand the reality of someone for whom that’s the furthest thing from the truth. To most of the people around me, it’s my fault that I’m sick. I have to be doing something wrong, because if not, why wouldn’t I be better yet? I have to be doing something wrong.

Yet even doctors who are experts on these diseases admit that there is still a lot they can’t explain. Why two people with the same disease will have completely different food triggers. Why some people never go into remission, how some people still get severe symptoms and flares even when they seem to be responding to the medication.

My body doesn’t belong to me, or at least not only to me.

It belongs to Crohn’s, which will throw tantrums in response to stress – especially emotional based stress – random foods, medications, the weather, and sometimes for no reason whatsoever. It’s extremely picky and will sometimes completely change its mind about what it’s willing to tolerate and not and what it will agree to eat that day.

It belongs to my arthritis, which reminds me of its existence from time to time by making it painful to move, or to sit still. By shooting electric sparks of pain up through my nerves in spasms, sometimes unpredictably.

It belongs to my IBS, my fibro, my PTSD, my anxiety, my autism, all of which have their own individual quirks, and demands, and seemingly minds of their own.

My life becomes about figuring out a way to keep the peace not only for with each individual disorder or illness or difference, but between them as well, never knowing when something might throw a new wrench into the works.

Each of them have their own personality, and in some ways its like they’re physical entities that reside in this same body with me.

Over the last two years, I’ve made physical strides I honestly would have had a hard time believing would ever be possible for me. I went from having a body that couldn’t handle walking across the street or even standing for upwards of 5 minutes without being debilitated by severe pain, to being able to actually go for walks. Maybe not super long ones, and I might still need to take more breaks from time to time, but the difference is hard to believe.

Getting access to my wheelchair and gaining sudden access to the world in a way that I hadn’t experienced for years, started me on a path towards regaining strength I never thought I could possess. This summer, even while I still dealt with periods of increased pain, I still found myself physically stronger than I think I’ve ever been. I was able to do things I could barely believe myself.

I could lift surprisingly heavy things with relative ease, despite the fact that I have a bad back, a bad hip, and a hernia.

For the first time in I don’t know how long, I’ve felt strong.

Don’t get me wrong, I still have a lot of limitations and I am very aware of the need to be careful and not overdo it, but what I’m capable of now is so much more than I could have even imagined possible just a few short years ago. I even applied to a program at a university aimed at giving me a chance of finding a life path that I could find fulfilling and possibly even enough to support me without disability.

Then a couple of weeks ago I woke up with a sore throat. And within two short days, it was obvious that is was bacterial, likely strep. I had the classic white spots, swollen tonsils, the whole package. As is reasonable, I went to the doctor and I was prescribed antibiotics.

These antibiotics had a severe effect on me. While they did what they were supposed to in getting rid of my strep, they also pushed my crohn’s into a sort of overdrive. The whole time I was on them, I kept running to the washroom on an hourly basis. I could barely eat due to nausea. I was doing my best to deal with the possible loss of electrolytes, making sure to try and prevent sudden major drops in potassium, magnesium, and so on. I was counting down the days till I would be done with them in the hopes that I would feel better. Instead, though I was no longer taking them, I kept getting worse. I was unable to sleep, running to the washroom constantly, and my pain levels were constantly getting worse. I couldn’t eat or drink without feeling as though my entire digestive system was one raw wound. I even had to get checked out to make sure I hadn’t contracted C.Diff.

I hadn’t this time, which meant that the pain I was feeling, the inability to eat, to drink, to do anything without being curled up wanting to cry with every twitch of my gut, was all being cause by my own immune system. My own body was shredding me from the inside.

The combination of lack of sleep, dehydration, and an inability to take in food left me shaking with weakness. I felt like a day-old kitten. The effort of standing was enough to exhaust me to the point where my limbs were trembling.

It was such a harsh contrast to the strength I had felt just a few weeks before. A sharp reminder that at any moment my body could take every gain I had made and make it functionally meaningless. I have so little control over my own physical responses to even things that should be basic like food.

I have to rely on outside helps of medications and so on just to keep my own body from hurting me. I have to make bargains, further damage to my hip joints and bones in exchange for the ability to actually eat a meal. Having to take opiates in exchange for a few hours of sleep and a few moments without pain.

Meanwhile around me, other people get to decide the validity of my reality.

Bureaucracies that get to decide that because my symptoms appear every other day than every day that it somehow makes my condition less chronic and re-occurring. That get to decide to gamble my relative health for the possibility of saving a bit of money.  At the mercy of greedy politicians wanting to cut off access to life-saving medical care for the chance to line their own pockets.

Doctors who decide whether they believe me enough to treat what is happening to me or to even bother to verify what is happening. Doctors who can use my body to cause me pain by withholding treatment, or symptom management, or even access to basic care.

Even people on the street feel entitled to question me about why I need an accessibility device, or an accessibility pass.

A simple infection making the rounds among people, can land me in the hospital, not even because of the infection but because of the treatment.

My body isn’t a part of me, it’s what I have to placate to get the chance to be me.

My piercings, my tattoos, they’re ways of anchoring me to this flesh, or making it mine in some way because every other way has been denied me. They’re a way of staking a claim to this body, that has been claimed in so many ways by illness, by pain, denied any reasonable measure of control.

So much of my life is controlled by these parts of my own body. What I wear, what I do, it’s all in some way in deference to this reality that I don’t own my body. And I never got a choice in the matter. Not really.

For all that I recognize that with anxiety and things of that nature that it’s not the case, but the idea of actually feeling ownership of your own body, to actually feel like it and its various parts are a part of you feels to me, like an overwhelming privilege. To feel connected to your own physical form to the extent that the act of taking some of it out and putting it back in could alter it enough to feel foreign simply by virtue of the fact that it left… you.

I can’t understand that. I can’t process that. Because that would mean that it was me that was causing me to feel like this. It would mean that it’s me that’s trying it’s damnedest to destroy me. Me that’s doing all that, even as I tailor my whole life to it’s demands to prevent it from happening. It might be my own body attacking itself and causing me this pain, but it’s not me. Because this body, while I am a part of it, isn’t… me. I don’t know that I can explain it better than that. It can’t be me, because I spent too much of my life fighting it and trying to keep it from destroying me.





This Body isn’t ME

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