My specialists at rehab doubted that I would ever get anywhere near my pre-stroke level for writing, reading, planning and comprehension. And mostly they were right. But eventually, or in a way, I started to understand what had happened to me, though I could not process it. That was my comprehension deficit.
To comprehend the cause of my stroke was not the same as understanding the consequences of my stroke, or where I might be in a year or two or for the rest of my future – that is, my prognosis. A prognosis, understanding the future, is too abstract after a stroke. It would have been meaningless if you had given me a weather forecast. Weather today I might appreciate – but next week? No. I could not understand the concept. When one of the neuro-somethings spoke about my prognosis, I would just nod to get them to leave.
Finally, a psychologist was able to put the idea of abstract-thinking in a way that I could understand – by using the concept of humour. He said that comedians see the world through abstract-thinking, not through concrete-thinking, and that makes unexpected connections that drive the humour. Put simply, abstract thinking is thinking outside the box. Seinfeld is full of unexpected connections.
My therapist noticed that I had many funny stories about my experiences in hospitals before my stroke – I could find a lot of humour in the absurdity of hospitals, like being in an episode of General Hospital. He asked me, “Why are all those funny stories before you had your brain injury? Why haven’t you had similar stories about your last time in hospital and rehab?” He was right. I could not remember anything funny about the first year after my stroke. I just hated all parts of it. He explained that my brain injury meant no humour, because humour is an abstract concept.
But looking back, he was only partly correct. I had lost my humour and other abstract concepts – like the future – because I had lost my ability to imagine how things can turn out. When I was told how hard it would be for me to learn to read, the result was that I just stopped trying. Like facing a detour sign on a road without being able to imagine an alternative route – I would just stop in the middle of the road. Instead I focused on my speech because I had a speech therapist who drove me very hard.
But now I know that I lost what I desperately needed – hope. I could not imagine any hope.
I always thought they went together, imagination and hope, like Sinatra’s song, Love and marriage, they go together like a horse and carriage, you can’t have one without the other. Hope only exists if we can imagine a better future. And honestly, throughout my adult life, I have an unquestionably held a belief in hope, no matter how naïve it was or how hard things were. It drove me forward.
Lose my human imagination, lose my hope – you can’t have one without the other.
And I loathed the term realistic hopes, which really means lowering expectations. I was shocked when a new member of one of my therapy groups – a strategy group for outpatients to learn how to find shortcuts to deal with brain injuries in the real world – introduced herself to the group saying, “I was always hopeful for all my life, but not now. I cannot remember the last time I felt hopeful after my stroke.” She was a victim of lowered expectations, though she clearly did not appreciate that joining the group was by itself a hopeful step. But I saw myself in her mindset. There was a blank space where my innate sense of hope used to be.
But I had one thing going for me that kept my hopes alive, like a small charge in a car battery with just enough power to start a car. I am very patient. In fact, just a slight memory of hope was enough to keep it alive until my imagination kicked in. I kept a secret, from everyone, that I practised the mechanics of writing a couple of hours every day, only because my long-term patience and doggedness was so ingrained. Even though it often ended in tears. It got a little easier when later my son taught me to use a computer again, by itself a mammoth task.
Let’s be honest, I kept my writing a secret mainly because I was ashamed to expose my disability compared to what I used to be. To share my hopes was to expose that my hopes were built on nothing. One discouraging word would have been enough to take it away forever.
I preferred to cling to unrealistic hopes.