In your relationship with doctors, there is a fair chance you will hit rocky times, more so when you have a neurological condition. Doctors have good and bad days, but day in day out, they essentially remain the same person in the same job. Not so for the patient. After an Acquired Brain Injury, you may or may not be the same person as you were the day before you entered the hospital. More likely the latter.
In the early days after my stroke, in my mind I lumped together all my neurologists/specialists as brain doctors. And they certainly seemed the same to me. After a few anguished so-called conferences, I determined that all brain doctors are not to be trusted. And I am not alone with that. I have heard the same, again and again, from other victims of a stroke. Brain doctors are not to be trusted.
We may be cognitively challenged, but we are not stupid. We know that not trusting brain doctors is, in part, a projection of not trusting ourselves – but that is a mature perspective far beyond our capacity in the initial months of recovery. In those early days, I could only see the brain doctors as caricatures, whether a psychotic-like Dr. Lecter Hannibal or an inept-like Groucho Marx’s Dr. Hugo Z. Hackenbush in A Day at the Races, where Groucho plays a veterinarian who poses as a brain doctor.
I wish I had taken been able to challenge my prognosis. And to be fair, it is not so much that brain doctors are untruthful with their prognosis. In the short-term, a prognosis depends more on the location of the brain injury and the extent of the trauma, often from an analysis of a Magnetic Resonance Imaging (MRI). But it is the judgment of the brain doctor that informs a long-term ongoing treatment plan.
It is the latter long-term treatment I want to discuss.
A brain doctor – I had so many I cannot remember what his specialty was – was forthright about my prognosis. He did not expect me to reach an average level of reading, writing, or planning – the Big Three of a cognitive injury. Maybe he was trying to protect me from my unreasonable expectations; maybe it was the way I took it. But that prognosis plunged me into despair. It was a death-knell. An unchallengeable judgement.
You must understand, when we are in the early throes of an Acquired Brain Injury, we always think it will get better. Always. There is something within all of us that we believe we will get better, no matter how bad the situation. Not like the biblical miracles of the fish and loaves or the parting of the Red Sea. When my mother was clearly in decline at the end of her illness, at only sixty-four, I asked if she still believed in God’s help in her situation. “Of course,” she replied. Of course. I do not know why, but we simply trust in something that will protect us, no matter that logic argues the opposite. It gives us the confidence to persist with our work with therapies and focus on the things that matter.
I also reject what I have heard many times about having a brain injury (or any serious illness): When one door closes, another door opens. A friend, who had a stroke, put it in another way: When the door closes, open the window, get the fuck out of the room and get onto your own road. His version is what I believe: Follow the treatment, listen to your brain doctors, but get onto your own road as soon as you can.
The real question I was asking my brain doctors was: In the long-term, what are my chances of a meaningful recovery? For me, a meaningful recovery must include an ability to read, write, think and plan – no matter how long or winding the road. As it turned out, that brain doctor was mostly correct in his prognosis: Now I am a struggling reader; planning is a job I need to leave to others whom I trust; I cannot even follow a lot of television shows; and I trust too much in others’ analysis.
But he was plainly wrong about me. That assessment left the me out of the conversation. I desperately wanted to learn how to read, write and plan the future. I did not care about his low expectations – I wanted a method to attack the problem. I knew I very much wanted to get the fuck out of the room and get on my own road.
Get on my own road – that is exactly what happened when I started to learn how to use my brain through the Feuerstein Method – a perfectly suited method for a determined person with a cognitive deficit. It is a program about learning how to learn. And I certainly resolved to learn. And I was determined.