Tonight Terry showed me an email from a list he belongs to, his Traumatic Brain Injury Support group. The man who wrote the entry posted this quote from a dear friend of his. I think it is so true and so telling and it speaks to the TBI survivors point of view, one that us “normal folk” may sometimes miss.
“Brain injury at best is one of the harshest most sinister life changing disabilities a person can experience. It is not fair how it strips pieces of who we once were to the point where we must recreate ourselves, leaving us many times trying to navigate this hell. All the time those who we need the most cannot even see it, and by the time people get this figured out we have caused so much damage to the infrastructure of our lives.
So here is this completely new person, with no support, no understanding. Many times they are labeled bi-polar, on drugs, crazy. All that is happening is this reformation, relearning of any of the skills we lost, and on many survivors’ minds is this unfairness of how people treated us along this journey. Resentment, anger and even hate and rage have come from this.
The time is now, that we the survivors of the world need to let new survivors know what could be in store, we need to connect our disability community to pose it in a position of power, not one of division and weakness. 65 million of us.
Together there is nothing we cannot achieve. Alone we get lost in the corners of society.” I believe a man named Peter Hoecherl wrote this and truer words were never spoken.
I am caught on one side of the chasm that is TBI, and being the one left to try to pick up the pieces and lend support to a survivor has been the hardest thing I have ever done. I don’t regret a minute of it and Terry and I are damned lucky and we know it. Lucky because Terry was a firefighter with truly excellent insurance that paid for his care in a rehab facility like the Centre for Neuroskills in Bakersfield.
Not very many Americans have access to that level of care. Without it, Terry could easily have lost the forward momentum he fought so hard for. He made it all the way back. Today he is about 95% of the man he was. Here’s the odd part, he’s a different man now. Its like being married to his twin. Brain trauma does some weird shit to people.
I saw the lost part, the angry part, the confused part for myself as Terry came back from the edge. Again, brain trauma is truly crazy-making because the victim can look completely normal outside and be lost in the woods inside. Marriages break up and families shatter because care givers are as lost and confused as the traumatic brain injury victims.
When Terry recovered and returned from his traumatic brain injury and returned to his job after less than a year of recovery and rehab, a miracle in itself, he was welcomed warmly. Yay..round of applause…and then a lot (not all) of his co-workers treated him like a crazy leper because he had been injured and they knew about it, they seemed afraid to give him back the work he had done before and avoided talking with or spending time with him. He felt like a charity case and it was maddening and frustrating.
My advice was to give it time and give his work his best because something would come along and eclipse his accident and it would be forgotten. Sure enough, it took over a year and he worked his arse off, but other things came along and the community memory faded. He is a fully-functioning team member and very much appreciated as one of the best in the business at what he does.
I still take a lot of the extra load off around here for him, I’m now the bill payer and the banker and the paper pusher because I can do it. Terry gets tired. That’s a side effect that will never go away. Rebuilding all those brain cells and neural pathways will take always take extra energy and I seem to have enough for both of us.
Just because I pick up the slack doesn’t mean I’m a saint, I get tired and cranky and resentful of the fiscal hole we’ve had to climb out of after a major accident like Terry’s. I could still kick him on a regular basis for getting on his motorcycle at night in deer country and doing this to us, but I think the price he has paid has been high enough.
That’s the thing to remember, the price TBI folks pay is never paid in full. I think that’s why I started to write this blog, to pay all the love and care we got forward. I thought of all the families lost in the dark without a candle or a match and wondering what is going to happen to us? What could happen? What comes next? How will I cope? What’s out there in the dark?
I remember right after Terry got back to Olympia, he was in medical rehab for a broken neck, broken ribs and broken wrist and his short term memory was gone. I was home by myself and I googled Traumatic Brain Injury Support in Washington State. I didn’t find much, but I did stumble into a chat room of traumatic brain injury survivors and friends. I will never forget one 20 something girl telling me not to take more than one day at a time, she assured me it would get better. She told me her dad had been brain injured and her parents were still together and happy ten years later. At Christmas her mom bought and wrapped a present for her dad to give her mom and the giving and opening of that gift was special to both of them every year. It does get better, nothing is static, everything changes.
She was right. It did get better. That’s the thing that a lot of people don’t realize about brain injury. If you keep challenging yourself you just keep getting better. There is no stopping point and you set your own speed limit. We made it. I’m not exactly sure how, but its Valentine’s Day now and Terry and I have a lot to celebrate. I’ll go back to the Chronicles and the Adventure of how we got from there to here tomorrow but right this minute, I’m celebrating us!