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Neurodiversity & Traumatic Brain Injuries: A Guest Post

"Brain injury survivors may require more time to think or speak, and it does not mean we have lost our intelligence.” ~ from Flint Rehab

I'm back to share with you another guest post from my one 'n' only, this time sharing his experience as a survivor of a life-changing traumatic brain injury suffered in the early 2000's. As the partner to someone who has had it as long as I've known him, I can tell you it's definitely a unique addition to our relationship, as I don't know what he was like before it, and have had to learn a LOT during our marriage about its impact on how he thinks, speaks, behaves, and relates to the world around him. Being from the HR world and worked with a number of candidates and employees with employees requiring accommodations for their disabilities, I've also watched closely how his employers have treated - and mistreated - him even when he's been fully transparent from Day One to his manager - and HR about why certain things take longer for him. As one of the most brilliant minds I've ever met, learning about how the brain changes after injury and how incredibly amazing his recovery has been - beyond what doctors even said he could do - I'm constantly impressed by survivors of a hell I cannot even imagine. Leaders and HR folks - get educated about TBIs and understand it has NOTHING to do with intelligence and EVERYTHING to do with the fact that we are all, beautifully, unique in how we interact with the world around us.

2003 maybe? I guess that sounds right, but the date itself is not that important and not what I really pay much attention to. It’s what happened early in that year that had and still has a profound impact upon my life. As much as I try and forget things (and as forgetful as I am (more on that soon), I am reminded annoyingly so on an almost daily basis.

Here’s what happened: I was found on the street in one of Melbourne’s less salubrious neighborhoods fairly much non compos mentis after sustaining an acute subdural hematoma, which in lay terms is having a lot of blood fill the space between my brain and skull. My memory of events is non-existent as is the few weeks in hospital afterwards. Something to do with the brain stripping down to basics and getting into survival mode. No time for solidifying memory, only time for keeping this poor fucker alive. It could have been a result of a blunt trauma or it could have spontaneously occurred. Either way cause doesn’t matter. I don’t give a shit. According to my medical records, I needed emergency surgery to relieve the pressure on my brain so two holes were drilled and I was bled out as such. Apparently I was kept in a comatose state over those few weeks, so nothing really stuck. I have vague recollections of relatives and friends coming to visit, but its all kinda hazy. After those few weeks I started to gain a little more clarity. There was no classic coming out of a coma “what happened? What year is it? Who is that old man in the mirror?” scene. That shit is for movies. Mine was more of a slow lifting of the veil or a focusing of the lens. I wasn’t out of the woods by a long shot as I was a non-functioning adult. I could do all the basic things like eat, sleep, piss and shit, but everything else was just a complete shemozzle. I found it hard to walk, put together a cohesive sentence, make any complex decisions (let alone comprehend complex ideas), read/write or function as a regular citizen. The decision was made to send me off to a rehab facility so I could begin to relearn a lot of the basics of what functioning members of society do. It was a very structured few months of physical therapy, exercise, visiting occupational therapists, social workers, neurologists, neuropsychiatrists, speech pathologists, psychologists and a host of other medical folk. I learned how to read again, without having my crazy eyes dart all over the page (put a ruler under each line to help focus, read in short spurts), how to walk without falling arse over tit, how to slowly understand how the decision-making process works, etc. Before I was released, I had a sit down with eight or so medical folk to discuss where to next. I just wanted to get back to the world. After I was released I went back to as normal life as possible. As I was pretty much homeless and the offer of government housing didn’t appeal, I camped out with my dad for a while. I slid back into my work in social services slowly (thank you strong union for stepping in for me and making sure I was treated respectfully!) and back into life. I remember doing a LOT of sleeping. The most basic of everyday things would wipe me out, but I was happy I was alive and could get back into life, albeit a different post injury one. I found a place to live in a cool part of Melbourne and muddled through the ups and downs of life, just like a regular person. The one thing I do remember is having a bunch of memory problems, especially short term memory. The longer term ones were generally okay, but encoding short term ones were a nightmare. One memory I do have (because I wrote it down) is my neuropsychiatrist telling me I had post-traumatic amnesia. It sucked, but I battled on and managed to survive. Fast forward to now nearly two decades years later, and I have found myself looking back into my past and how it is affecting my present. Some things are better brain-wise and physically I am okay. I can walk, talk, read, write, bike, drive a car (though one might stay off the roads if you know I am on them) and hold a fairly intelligent conversation with most people. But there are things which still annoy the fuck out of me. I have always taken pride in having a good grasp on language and the words and symbols, both written and spoken that that make it up. I find language is the net by which we capture and share experience and I love all ways in which it is delivered, whether it be prolix or verbose or crisp and curt. However, finding those words floating around in my brain pan has been and is still murderously difficult. When I write, as I am doing now, I can afford to stop, think and check within my head whether that is a suitable word to capture the moment, but when I am conversing, or even thinking, I find myself almost frozen in trying to come up with words that represent what ‘is’. I find that metaphor sometimes helps to explain: Our brains are like a giant hard drive that stores most things in life and within that drive is a vast vocabulary that we have acquired over the years. Except that where most folks have the latest software updates installed (and therefore have the best access to data within that system), my system doesn’t support updates and therefore doesn’t have optimum access to information. For reasons I’ve not yet fathomed, I find that I am increasingly defining myself by my limitations, rather than my already existing intelligence and potential for the future. I had a major brain trauma, I was told that I would never get back to full capacity, therefore I should not waste a hell of a lot of energy in doing so. A reductive fallacy but still one I sometimes actively believe in. At its most extreme, I go through the “I will never learn anything new – I am stupid – I would rather hide away from the world and hope it will hide away from me and let me be.” Scary and self defeating…and hardly a way to move forward in life. I still have memory problems, and more than enough cognitive issues. At times it does get to me in ways I would rather it didn’t. Either way, these feelings do pass. I try my best to work around these obstacles, which irks me, and to let people know about my TBI and what is happening to me when confusion sets in. And with that, accept my limitations with grace and aplomb, and remember what I AM capable of.

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