Today marks twelve years since my official MS diagnosis. I have taken a break from writing for a while now (I am going back to edit old posts), but this auspicious occasion called for something.
I want to give you all a sneak peek into the mind of the 'newly diagnosed'. The pages below are written in a fabric-covered journal with a Maya Angelou quote on the front that I purchased the evening of my diagnosis. When I grieve, or when I am just very melancholy, I often step outside of myself a bit. It lessons the pain of the moment. I may view myself and others with a bit of a hazy barrier...as though I am watching a movie. It allows me to show greater compassion to myself. To care for myself as I would care for another.
Rather than type this journal entry, I have scanned the original pages. It is interesting that I went to this appointment alone (though I did have a friend drop me off and pick me up, as I could not drive). The journal provides a great record of the disassociative posture that I took in the pharmacy waiting room...as a way to manage my grief in the moment. The level of detail that I could recall later that evening amazes me. I was so intent on stepping away from my personal experience that I hyper-focused on those around me. As I read these pages I can picture the waiting room perfectly, even beyond what I wrote. For those who know my terrible memory, this is another great mystery of the human brain.
But the main reason that I wanted to scan the actual pages is so that you can watch for my 'pauses'. Those spots on the page where my handwriting wobbles and becomes illegible- those are 'pauses'. These episodes lasted anywhere from 5-30 seconds. When the lesion in my brainstem put me on 'pause', things either slowed to a snail's pace or stopped entirely. This included my hand- whether writing or holding a cup of water, my speech, my right foot on the gas pedal, the leg that needed to move forward and join the other one, my ability to finish swallowing that bite of food that had just started down. That last one probably explains the pneumonia that I was diagnosed with 3 months later. The 'pauses' were terrifying for me. I don't know if I ever told anyone just how terrifying. I easily had over a hundred a day. The brainstem is not the place that you want a lesion. But here is another great mystery of the human brain, by 2009 my brainstem lesion was no longer visible and is still gone today. For me, this journal reminds me of how lucky I am to be where I am today. Incredibly, undeservedly, lucky. And grateful. For more than I can say.
Click on the first journal page to open them up into a readable size slide-show