I was in sixth grade when my mom was diagnosed with Multiple Sclerosis. These are words I have typed before and I will continue typing for the rest of my life. I will never type the words, “My mom was cured” and coming to accept that has been a challenge on its own. Having gone back and forth between deciding if I wanted to make my ePortfolio professional or personal – I realized that I will get so much more out of this course if I follow my heart and write honestly. I recently read a piece written by Maya Wileke, a MS warrior, that addressed the disease head-on. Needless to say, it was my jam. This open letter is something that I want to emulate. I also find it to be excellently written and crafted in such a powerfully artistic way. You can find her piece here.
Why did you choose me when there were so many other people you could have picked?
Wileke opens with the million dollar question that I have been asking for 8 years. Why my mom? What did she do to deserve this? The spatial arrangement of her words adds so much to the way I read the piece. I take a pause after each line and there is a purpose behind every word. There is something so powerful about having You’re here stand alone. Multiple Sclerosis takes over your life. It is never invited. MS is the pessimistic, mean, and life-sucking uncle that no one wants to come to Thanksgiving dinner. But he shows up every year. And every year he brings a worse side dish. You’re here.
I enjoy this piece because it reminds me of my mom. Here’s the truth about MS but here is also her truth: she is not MS. Wileke transitions from roasting MS to sticking up for herself and declaring her victory.
You don’t own me MS, you don’t get praise for having me. No matter how bad you treat me in the future, I will own you instead.
You’re you and I’m me. One thing I will never lose is the knowledge that I conquered you. Perhaps not physically, but mentally I am stronger than you.
You’re here to stay, but I won.
I won yesterday.
I win today.
And I will win tomorrow also.
Personalizing MS makes venting a little easier. Again, Wileke’s spatial arrangement has transformed her words into triumphs. She speaks to the past, the present, and the future. We cannot dwell on the fact that MS has no cure, we must instead continue fighting and continue living. That day in sixth grade was hard. Sixth grade was also when “ur mom” jokes were popular. Let’s just say it was poor timing for a fad. But you know what? MS has not destroyed me – it has given me a mother who continuously inspires me to live unapologetically and fearlessly. I won. I have her.
I can hear my mom when I read this piece and I think that’s what I admire so much about it. I plan to read more open letters addressing MS as I plan my first project. However, I do not want to write anything that has been written before. I want to spread awareness of this awful disease, but I also want to create a place where children of other MS warriors can come and feel understood. Let’s see what I can do.