If you're interested in Peter Vaughn's LiquidDesert click the link above for "old LD". The only thing missing from that site is recent updates, including epilepsy surgery and an intro to brain injury. Unfortunately for me the world was still young in their knowledge and understanding of brain injuries, even though brain surgery is an ancient practice. I have a brain injury, the same as anyone who has suffered a stroke or Traumatic Brain Injury (TBI). Mine is referred to as an Acquired Brain Injury (ABI), just that instead of an accident that concussed my brain, my brain injuries were caused by illness and human intervention.
I have only recently discovered and begun treatment for my brain injuries. It has been a long road but I am so thankful I am finally where I am, with this knowledge of something called Brain Injury. For the longest time, no one could understand how my world was flipped upside down. I looked just fine and the cancer was in remission so what was my problem? No one, not even I could understand what was happening to me after the initial craniotomy to remove the tumor in 1994. Anger, depression, insomnia, random and constant muscle pain, confusion, learning disabilities, prosopagnosia, aphasia, apraxia, executive function disabilities, vertigo, seizures... The list goes on. I struggled to survive in what I can only describe as suffocation. From 1994 to 2009 I was on horrible anti-seizure medications that made me gain weight, caused high blood pressure, fatigue, kidney disease and so much more and never prevented a single seizure. It would take more than 20 years before I gained any insight into what happened to me, not that it mattered.
In 2009 I endured another ABI with epilepsy surgery fifteen years later. Naively, I hoped and believed that with the seizures gone I would return to myself - pre-cancer and pre-seizure but I never could. I could never understand why I wasn't me anymore. Everything in my life was difficult, I couldn't do anything like I could before. I struggled to get off disability, which I was on for seizures, but the surgery had taken my seizures and my quality of life as well. I wanted to go back to work but I couldn't do the same things I had always done and tried to go back to school. Initially I had some success, but it didn't work out. Later, when I went back again I really struggled and eventually dropped out. I couldn't understand why it was so difficut - I thought perhaps I just wasn't motivated or that maybe I was lazy. Most everyone else did too.
It wasn't until a documentary about an Olympic hopeful changed my life. It was called The Crash Reel about snowboarder, Kevin Pearce. It begins with his journey to the Winter Olympics and changes direction when he is injured while training and becomes a documentary about Traumatic Brain Injury. I identified with Kevin on so many levels, not just with the brain stuff. His being an athlete that was taken from him and then yes all the brain injury stuff. It really opened my eyes into the TBI world and what was happening in my own life. We knew I was struggling but didn't know what to call it and without a name or diagnosis I couldn't explain it to anyone. I don't know if it is still this way today but I was amazed that the medical community could understand how hitting your head and getting a concussion could cause brain injury, as in Kevin's case, but not in mine where my brain was cut into with a saw and surgeon's scalpel and eventually an entire lobe was removed. What? Bruise versus removal? But I was left to go back to life with no help, no rehab, no suggestion that there might be some lasting consequences to having parts of my brain removed. Afterall, I looked just fine! So I just kept trying, to be normal, to get a job and work, live and survive like you're supposed to. But I couldn't!
It's crazy for me to look back on my life, my jobs, my schooling, my relationships, and all the craziness since 1994. This is exactly what I have been trying to "figure out" all these years. Every year on the day of that first surgery, I have taken time for myself - get out - get away to think, ponder, pray, read, write and attempt to "figure it all out" but really what that meant was find myself, what happened to me... where had the Pete Vaughn, that I always was, gone? It wasn't the cancer or the lost friendships and other relationships I was trying to understand, it was, but I didn't know what really I was after or if something could be discovered or figured out. What happened to me, where did I go? When will I come back, where am I? And I never could figure any of it out until The Crash Reel! It's really only been a few months and I have learned so much about myself and made so much sense out of the events in my life that I may never have understood otherwise. I'm so grateful for that documentary and for my wife's friend that gave it to us to watch. It has absolutely changed my life forever. I'm grateful for those who have the courage to share their experiences, which is exactly why I keep these sites up (and occasioinally update them, sort of...)
It has, in a way, sort of thrust me into the next chapter of my life finally, and I am so glad that it was now. But this chapter comes with it's challenges too. Like accepting it. I have been operating on the chimera that one day - somehow - I would find my way back to myself. It was always that day when I was able to get off the AED's or when the seizures stopped. That day came and went and because of the surgeries I was actually worse off than I was before - (which was with one brain injury, now I have a worse injury on top of the first). Armed with this knowledge, (i.e. this thing called Brain Injury) which is a real thing, I can explain myself to people without much difficulty. But here comes the difficult part - something called acceptance. Somehow, please tell me how, I have to look at myself in the mirror and say 'OK, now what?' How do I accept that who I was is no more? That this is my new Modus Operandi? Does it mean I have to like it or perhaps convince myself that I love the new me? I suppose the ironic thing about the new me is that it's actually the 22 year old new me, going back to that first ABI of 1994. More like a newly discovered me. But, I don't know how to accept that I am gone. I think it's a nice thought and I see the peace in the lives of those I've met who have been able to say "so this is the new me, how do I proceed?", but I DO NOT WANT TO ACCEPT that this is who I am, that I am stuck with disabilities, that I will not change or go back to who I once was. I'm twice as old as I was at the time of my first injury, I suppose rationally, deep down somewhere, I know I'm long gone. So, now what?
I have been living my life this way for 22 years - saying to myself that I'm out there somewhere (perhaps more that I am in here somewhere rather) and waiting, expecting to someday return. I am convinced now that there's no return from Braininjuryville and there is a lot of peace just finally knowing that, instead of ever-wondering when I am coming back. It might be similar to how one feels about a lost love one that has disappeared and turns up dead. It's relief to know they've been found, but then again, that person is gone forever. I don't know if that's stretching it but that is how I feel. I'm glad to know what happened to Pete Vaughn, but I am sad he's gone. I suppose most people in my life now never really knew the old me from before, and if they can accept me perhaps I'm not all bad and can accept msyelf too? Perhaps...
On this, my 22nd D-day, my writings led me in a direction that I have struggled greatly with over the last year, namely something called 'Acceptance'. Over the past year I have unknowingly been going through the five stages of Grief: denial, anger, bargaining, depression and acceptance. These are a part of the framework that makes up our learning to live with the one we lost. The strange thing in my case is that the one I lost was myself. I am happy to finally be reaching this point of acceptance. I hope it takes and that my search for answers, the search for myself can finally be over and I can move on, or, at least, forget about the past and move forward. It's been hard to learn that I'll never get me back. That who I was is gone. I think in my case I have always been searching for me and now I have discovered that I have turned up dead. I even wrote an obituary for the old me. I know that may sound weird to you, dear reader, but it was very therapeutic for me in this journey called 'Acceptance'. It's hard to accept that I'm gone, but it is equally as difficult to accept that this new me is permanent, that this is who I am and will ever be, disabilities and all. Not cool.
I am grateful for today and the things I discovered. I hope they will allow me to accept, forgive, move forward, and allow and remind myself that it's ok to be happy. I have directed my life, for many years, afraid to allow myself to be happy. I was afraid, I suppose, that if I admitted to myself outloud that I was indeed happy, that the powers of the universe would combine against me, once more, and destroy me all over again. The fact is, it never happened that way before, even though I had a couple of years where it really seemed that despite my greatest efforts, I could achieve nothing but loss and frustration. Today, however, I have decided that it is 'OK to be Happy!' Don't worry, be happy...
I like how the video below describes perception after injury, it explains a lot.