I am still legally blind in my left eye, although it appears to be improving ever so slightly. I never thought I would still be in recovery mode after 4 months. Unbelievable.
Right now, I am so thankful to not have primary progressive MS (PPMS). PPMS is when the disease quickly progresses and gets worse without periods of remission. I have the most common form of MS known as relapse-remitting MS (RRMS) which is characterized by sudden attacks or relapses, followed by periods of remission which can last days, months, or even years. Everyone's MS is not only different, but unpredictable.
Just as frustrating as being diagnosed with multiple sclerosis is dealing with the paperwork and bureaucratic nightmare on a daily basis that has followed. I've stormed out of my "family" doctor's office and vowed never to return, and sent scathing emails to my insurance company. No one treats you like a person who just received life altering diagnosis, no one gives a shit. All you are to these people are a file and a fee. It pisses me off so much to think how many companies are profiting off of me now and there's not a thing I can do about it.
I saw a documentary today called "When I Walk" by Jason Da Silva who was diagnosed with primary progressive MS in 2006 when he was 25. While I've wanted to see the film for a while, I had a hard time watching it. The first scene is just Jason's face and before anything had even happened, I was already crying a steady stream of tears. Parts of it I actually had to turn away from and it wasn't at anything gory or sappy, but the words he used to describe how his body felt. They were exactly the same things I had said at some point and suddenly everything became so real, almost tangible. The way his hands would clamp up and become useless looked identical to mine, but fortunately for me, I recovered. When he mentioned people telling him he was brave and him having the same sentiment that I did: It's not bravery! It's not like we volunteered for this or had a fucking choice! I couldn't even muster up the courage to ask questions after the film when Jason was sitting there, on stage right in front of me in his super hip scooter which he now requires to get around.
Multiple Sclerosis is terrifying and it can happen to anyone, specifically Canadian women. For reasons not yet known, Canada has one of the highest rates of MS in the world, and women are 3x more likely to get it. It hits healthy individuals between the ages of 20 and 40 and there is no known cause or cure. And for being something that is increasingly common, it is shocking how much people don't know anything about the disease. There needs to be education about common symptoms so people aren't left in the dark for so long like I was, and the gaping holes in the medical system need to be addressed asap. I'm looking forward to starting a project with a friend to change that. Stay tuned.
Thanks for everything, everyone.
