Jan 262016
 

As I mentioned last week, I went to see a movie: Concussion.

I couldn’t remember what it was about nor did I bother looking it up. So I had no idea what to expect when it began.

I liked it. The camera angles, the use of music, the juxtaposition of beauty hiding violence, the suspense in a microscope all made for a movie that should have gotten an Oscar nod. Will Smith did a passable Nigerian accent, but he inhabited so well this doctor, showed his character and confusion and drive and dreams.

But Concussion only just began to tell the story of concussions. It didn’t go backwards to show the story of concussion itself, only the final damage to our brains.

I came away wound up and angry and very, very sad.

Sad

Watching the football players, alone, afraid, not knowing themselves, not understanding what was going on, yet blamed, abandoned, attacked, sedated for acting like people with a brain injury and for seeking help and compassion. I know what that’s like. What separates me from them is the world doesn’t know me, I have the background to understand, and I have the background to challenge medical authority. I am capable of being my own advocate. They were not. Most are not. It’s not their fault – no one should need a fucking neuroscience degree to recover from a brain injury.

No one should be left alone after receiving concussions, after having their brain damaged.

It’s a disgrace that their only advocate was a pathologist.

Wound Up

A man who speaks for the dead was the only one advocating for these football players and, by extension, us. Kind of metaphorical because a brain injury does kill off who you were.

I hate it. As one person muttered, all our lives have been ruined. And we get blamed for it – and for not joining the blamers in denying it.

As I said, the movie wound me up.

Anger

What angered me is the labelling of their neuronal damage as a disease. It’s not a fucking disease.

Disease: “a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury

It is repetitive untreated brain injury.

Why is this so difficult for the medical profession to understand? Did they nap during anatomy and physiology courses and miss the pretty pictures of the inside of our skulls? Did they never think: a soft organ like the brain slamming into the sharp edges of the skull’s bony interior is going to lead to some pretty awful ripping and tearing? I did. I saw that and thought: what the fuck, God? That’s one terrible design flaw!

Who knew God would get me for that! Ahem.

Another thing: the medical doctors and surgeons all know that if you don’t cast or pin a bone, if you don’t repair damaged organs, the body will heal itself but the leg will be misshapen, the organ never quite right, and over time these warps will lead to pain and deteriorating function.

So what makes the brain so special that it will somehow avoid these problems, all on its own?

This when only recently the medical profession woke up to the fact that the brain can regenerate itself, albeit at frozen molasses speed. Yet they never thought: if it can’t heal itself, we should heal it?

I object to the term “chronic traumatic encephalopathy”. It is not a disease. It is repetitive, untreated, unhealed brain injury.

The former term lets the medical profession off the hook for not treating us. The latter term puts the onus firmly on where it belongs: doctors who will not actively treat a person with concussion in order to stimulate healing and a return to society.

The former term makes it sound like a mystery that needs investigating, so let’s put dollars toward studying what happens when you don’t treat a concussion. The latter term makes it plain what it is and would enforce putting research dollars into how to treat the injury and education dollars towards disseminating knowledge about the good diagnostic and treatment tools that already exist. But physicians need to use them, and OHIP and hospitals need to pay for them instead of requiring me to fight to get treatment every single effing month and to pay for it out of my own pocket.

Concussion: go see it.

The first part of the story it tells, the part it doesn’t talk about much, is why I’m updating my book Concussion Is Brain Injury. It’s why I’m putting my ego on the line and crowdfunding my book update through PubLaunch in concert with Iguana Books – I no longer have the funds to edit and market it (publishers rarely market books for authors now), but I’m angry enough about my situation, about the situation so many are in, quietly suffering and struggling through on their own that I feel somehow I need to update my book with the pieces I’ve kept hidden up till now. And to update it with new hope for recovery.

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