I met last month with the CCAC Clinical Director (I think that’s his title) and my new CCAC care co-ordinator, the one for Acquired Brain Injury (ABI) for the entire huge city of Toronto.
I’m gonna get help!
After my eye surgery, all my plans for updating my book Concussion Is Brain Injury flew out the window as my new vision, a reorganizing brain, and a seemingly extremely long but apparently normal-for-my-brain-injury recovery period began to make me feel that I had committed to an impossible task. No longer having support from CCAC only made it worse. In 2015 and 2016, my neurodoc had promised me he wouldn’t let me fall through the cracks. But he did.
Then last Fall he woke up to where the cracks had lead me, wrote a letter, and followed up all on his own sans me nagging until CCAC responded.
After my Cogmed training ended, the two from CCAC came to my place a second time to confirm that I would have six weeks with a behavioural therapist and behavioural assistant to help me get my manuscript to my editor and then another four weeks after I had received back my editor’s structural/developmental edits to help me get the manuscript polished.
It may seem strange that I need help writing my own story. But unfortunately, even though I lived it, I cannot see the “big picture” of my book, cannot see where the holes and repetitions are. I cannot organize nor do the background reading in the same way a person sans brain injury and vision changes can.
I am rereading Concussion Is Brain Injury with my neurodoc and mother as part of my reading rehab in order to refresh my memory. I had taken a break from that while I was reading a novel for review as part of my reading rehab. Unfortunately, when we returned to Concussion, I couldn’t recall its reading rehab routine. My rehab is scattered among several people, none of whom know what the other is doing and all rely on me to keep track of the big picture. Both of the logical health care professionals who could oversee my care won’t: my neurodoc refuses to lead in this area as it’s not his usual style and would require learning new information about the brain and treatments, and my GP has left me to my own devices. And so it’s up to me to remember the details of my entire rehab. What was that I was saying about my inability to see the big picture? Yeah. Sigh.
Anyway, naturally I forgot the method we were using for reading Concussion Is Brain Injury and, as well, how immediately after the reading session, I’d launch Scrivener in order to edit, delete, or update the sections we’d read.
How we read it slowly returned to memory; this past week I at last remembered the post-reading session routine and have managed to update my book a little bit. My neurodoc also decided to become more active in learning about my updating routine and reminding me to do so.
I’m hoping that as improvement continues after Cogmed, that my memory will work better and expand that big picture ability. Even if I can never improve enough to “see” my book in its entirety, in one conceptual image, hopefully I’ll be able to remember and hold together all the strands of my rehab.
Anyway . . . CCAC is sending me a behavioural therapist who’ll see me weekly and will organize my writing and editing schedule, will see the big picture of my book for me and help me organize what I need to write or delete, and will co-ordinate an assistant who will help me with all the tasks in writing and producing the updated version of Concussion Is Brain Injury. Maybe this person will also be able to read and summarize the research for me! That’d be cool!
In the early years after my brain injury, I had someone here and there to help me do my work or organize my space. But then that petered off. And I was left wishing and wishing I had enough money to hire an assistant, even a virtual assistant. And then I just gave up and accepted my functionality was always going to be less than. Less than what I desired, less than what I needed to be part of society so that I wouldn’t remain the rest of my life on the periphery like people with brain injury usually are.
Suddenly, I have an assistant for a maximum of 10 weeks, and I have so many needs, my mind went blank as to what he could do.
I’m writing a list as writing-related tasks come to mind so that I’ll be prepared for our first meeting. It’s a tight deadline, six weeks, but I’m a quick writer. My two fears: my poor reading ability and my fatigue. Can I keep up this intense cognitive work for the whole time? By the end of NaNoWriMo, which is four weeks, I’m kaput. There is something energy-giving and focus-sustaining about working in proximity to other humans as I discovered when I found reading out loud to a fellow human meant I could read more, read quicker, read easier than when doing it alone. And so maybe I can keep going for that extra two weeks because, unlike NaNoWriMo, I’ll have someone beside me two or three times a week.
My brain trainer and I have decided that I’ll begin to go weekly for brain biofeedback in order to facilitate my writing. But if fatigue gets too much, I’ll return to biweekly until I submit my manuscript to my editor and have recovered some of my energy. It’s such a balancing act to get the help you need without being exhausted by it!