I used to unwittingly tap at the keyboard and confidently assume that a story would materialize on the screen. My fingers coordinated and crafted sentences from letters that my brain accessed, their locations and succession effortlessly cached. I’d get frustrated if I had to backspace too many times; huffing if I waffled between adjectives for more than a few seconds. I wanted to get those words out. Now. And it was easy. I mean, physically, it was easy. There was this unspoken connection between that luscious grey matter and the tips of my fingers.
And then it all disappeared.
This past March after a stroke-like reaction to biologics we hoped would help my autoimmune diseases, my brain MRI came back abnormal.
I’d had brain fog and some cognitive symptoms with my flares but my MRI from the year before looked fine. This was different. There were some white matter hyperintensities showing up bilaterally on my occipital and temporal lobes.
“Chemical triggered brain disruption” is what one specialist called it. I worked tirelessly with Occupational Therapists, doing assessment tests and playing games that seemed so easy until I somehow couldn’t understand what I was supposed to do next.
“Working memory, reaction time…your brain just needs some extra time to process what it’s seeing. And sometimes it’s hard to hold new information that you need to apply. You also seem to have a bit of a disconnect between what you’re seeing in terms of words and their meaning…”
I already knew this of course. I had been having a very hard time knowing what stimulus to focus on, or in what order. Sounds and images jarred my mind, fighting for space and context.
“Johnny wants his orange shoes to be below his hat, and to the right of his coat.” Simple exercises like this where I had to place items in their proper places, would have me in tears. I couldn’t remember what ‘to the right of’ meant. I had to look at my hands and remember which one was right and left – but then I’d trip up again. Where would the shoes go? Or was it his hat? What was ‘below’? My words were failing me. I felt like I was perpetually trapped in a math problem.
The first time they gave me a simple weekly schedule in rehab, I didn’t understand what I was looking at. I saw squares and rows. I saw the names of the days of the week in one row. I saw some writing in some slots. And there were numbers down the side.
“It’s a schedule. You know this. You used to make insanely complicated project management and production charts for teams.” I tried to rally my abilities but they seemed to stall out. Everything seemed foreign and arbitrarily placed. “I don’t understand how to read it.” I wept bitterly. “How can I not understand how to read it?”
It is terrifying to be aware that you have somehow lost or are losing mental acuity. Why were some things so easy and some things so hard? Would it go back to normal? Was this the new normal? Why could I remember a high school paper that I’d written, but not be able to keep adding 7 to a specific number? Why did I feel consumed by total panic and sensory overload if too many people were speaking at the same time? Why couldn’t I focus on their words or understand what they were asking me?
And then of course the bigger questions rush in. What would happen to my job? My life?
Was I even still me?
“What if it doesn’t go away?” I sobbed to my Occupational Therapist.
“Well, what if it doesn’t?” Her eyes were soft and her voice gentle. “You are doing great. Your results are below average, but that doesn’t mean that you are less of a person than you were before. And it’s true. These issues may never go away, but you are already developing strategies to help you through, and we can keep doing exercises together. I know that you will find a way to do all the things you want to achieve.”
I am lucky.
Both my occupational and physio therapists pushed me to engage with every aspect of my weakness. Numb arm? That’s the one to use. Can’t walk? Time to push this walker like you mean it. Unable to find words? Talk. Issues with planning? Execute.
They tailored my recovery to me. I could play video games to work on my reaction time. I could draw to help my hand-eye coordination. Simple video posts and publishing to social media could help with planning and execution. And the best prescription I ever received? Write every day.
I’m not going to lie –since March the bad days are really bad. The new autoimmune ‘cog fog’ I sometimes experience is often completely debilitating. But no matter what I still do my cognitive fitness, post videos every week and write however I can – using my phone or micro-blogging on Instagram- because I know that as engulfed as I feel, the fog will slowly disperse and I will feel that thrill of limitlessness return.
On good days I can still cook, drive, and read. I can be there for my kids. I can problem-solve and plan, and I still love to listen and help as much as I can. I can travel and see friends and crack jokes. I can use scheduling software and make phone calls and delegate. My words are effortless again. My dreams of the future start to gently resurface. And I feel brave around my old friend the keyboard – my fingers move swiftly, and I can finally hear the plot of my own strange story being born through that comforting Morse code click clack.