As my disability progresses, I sometimes feel like my brain is fading; like the version of me that once thrived on problem-solving, creativity, and independence is being slowly replaced by someone who struggles just to get through the basics. I know deep down that it’s not that I’ve lost my intelligence but the sheer effort it takes to manage my stroke-related deficits makes it feel as though I have.
I read an article yesterday, skilfully written by photographer Chris Gampat who is a blind person. He writes about his surgery to rectify his blindness which left him feeling “dumber”. This was quite confronting and seemed so harsh but is a feeling that I resonated strongly with. Read his article here.
Tasks that used to be second nature, now demand all of my energy. Something as simple as getting ready for the day, preparing a meal, or navigating a crowded space can leave me mentally, emotionally, and physically drained. I pour everything into managing the mechanics of my day and that can drain me of energy for the things that I enjoy; writing, learning and big-picture thinking.
It’s frustrating for me. When I finally do have the time to engage in the things that I’m passionate about, my mind feels foggy. My writing feels half-hearted, words come slower and my ideas feel thin. It’s as though all the energy I used to invest in creating and connecting has been redirected into my day-to-day existing.
After my corneal graft, I can see more clearly and the world looks sharper, but that has come with new complications. The glare can be blinding at times, I have nystagmus (involuntary eye movement) which is exhausting, and the diplopia (double vision) is disorienting. Every adjustment requires more effort than it did before.
I also have to remain constantly vigilant in the protection of the graft because deterioration is a daily risk. The energy I expend simply to see the world now often means I have less left to actually enjoy and engage with it.
Still, I am surrounded by incredible supports who help me make my days possible. However, each new layer of assistance is also a quiet reminder that I’m more reliant and dependant than before. It’s a strange duality I experience of feeling gratitude mixed with grief. Intelligence to me always meant autonomy in the ways that I think, act and create. But now I’m learning that it can also be the intelligence to adaptation and acceptance.
I write in my book:
I loved this [advocacy] work but I could only do it occasionally, as retelling my story was emotionally and physically taxing.
At the same time I decided to begin a Masters Degree in OT at La Trobe University. It would enable me to one day teach OT students, and would give me the credibility to prove to people that there was an intelligent mind trapped inside my new disabled body. The decision boosted my confidence even more – I felt that I was beginning to shape a new identity for myself.
Reinventing Emma, pg. 205
I’m learning that I’m not getting “dumber”, but I live in a world where intelligence is only measured on able-bodied people and I need to rethink what I define as intelligence. Because I am so smart in the ways I constantly recalibrate and problem-solve.I manage systems everyday in my sensations and symptoms that most people never have to think about, and that requires a whole different level of intelligence.