I am a student at heart. I've always loved learning, and fortunately, it has always come naturally to me. My grades have always been high, i've always been a strong reader and writer, and i've never struggled with paying attention or memorizing material. I've consistently strived to be the perfect pupil since the day I started kindergarten (which was a year earlier than it was supposed to be, because I was just SO desperate to learn that I begged my parents to sign me up early). I spent most years of my life on an honour roll, received quite a few scholarships for my essays and my marks, and was so sure i'd stay in school forever, because I was just so darn good at it. It was my defining characteristic - the highlight of my resume and CV, and the only real skill I thought I had.
And then the lyme came in and set up camp in my brain, and slowly everything began to change. I lost my ability to focus. I lost my ability to remember things, even if i'd just read them moments ago. I developed dyslexia and started jumbling and confusing words. I began to lose my train of thought mid-sentence, and started to forget words for things that i'd talked about my entire life. I developed a stutter. I lost entire days of my life to brain fog, and started being unable to carry on long conversations without finding myself confused and lost.
All of these changes started occurring while I was writing my Masters thesis (which probably helps explain why it took me an extra year to write it). I began losing my mind, bit by bit. It was so subtle at first that I didn't even realize it was happening. I thought i was just having a "brain fart". And then, slowly but surely, the problem got worse. The brain farts got more aggressive and much more frequent. I started noticing it in my speech, first. Then in my reading abilities. And lastly, in my writing. I was, piece by piece, losing my intellect. And as someone who has been praised my whole life for my intelligence and my brain, I felt deeply lost and deeply ashamed. My brain was turning on me after a lifetime of defining me. And in all of the confusion and all of the fear, I just kept wondering who i'd be without my brain. These thought patters brought me to the edge of depression, and walking that line plunged me deep into a shame spiral. I felt anxious, fearful, and alone. And I was scared to tell anyone about it, because I didn't want people to think I was dumb. I know, it sounds ridiculous to say it out loud. It sounds conceited, even. But i'd always been called 'the smart one', and that was what i'd been praised for. What would i be praised for now? I was scared that letting go of my "smart" label would mean getting stuck with the "sick" label, and that was debilitating. I don't want to be sick. I don't want to lose my ability to converse, to write, to read, to think. I love learning. I need learning. But I found myself on this slow slip, with nothing to grip on to.
These past few months have been exceptionally challenging. My dyslexia is more frequent. My confusion is more debilitating. And all of these changes have made me an emotional rollercoaster of experiences. I find myself lost quite frequently, and the fear is something I sit with on a daily basis.
But its not all bad. Throughout all of this, i'm finding myself discovering new ways of learning and communicating and teaching that fit with this new version of me. I'm living at a much slower pace, but i'm also savouring and absorbing everything on a much deeper level. It really is astounding how much more intensely you focus, and how much more you notice, when you fear losing your memory all together. It took a chronic illness, and the slow slip of my brain, to pay attention to my life. Now, I take a lot more photos and write a lot more journal entries to help me remember my days. But if you get anything from this blog post, let it be this - please don't wait for a chronic illness to set in before you start noticing and documenting your life, too.
I'm also beginning a new treatment plan next month with a new doctor, and am hoping that it will help me regain some of those intellectual skills that defined me for so long. I want my brain back. But in the meantime, i'm developing new ways to get by with this brain. I'm developing new skills and new labels for myself. I may no longer be the smart one. But maybe I can be the courages one. Or the honest one. Or the one that is healing.
Each day is still challenging, and to be honest, i'm still plagued by fear that i'll never get my brain back. But all I can do is take it step by step, and reach out to my community for support. For right now, i'm taking a page out of Glennon Doyle's book, and just focusing on "the next right thing" at a time.
Thank you for holding enough space for me to share my story here. Thank you for being a part of the community that pulls me out of the lonely, dark and twisty moments of this illness.
All love,
Nicole