It hasn't really changed her life

You know when you have an idea in your head of what you want to happen? That was me when I decided to make a video for my re-mediation project. I thought to myself, "This will be amazing. I'll share so many people's stories and really spread awareness for MS." Your girl was a little over-ambitious; what's new? Instead of finding a swarm of people who were dying to be filmed, I found one girl who grew up in the next town over from me. We had mutual friends through the theater community and I was ecstatic that she happened to have a parent with MS, too. That sounds odd, but you know what I mean.

We finally coordinated and met up to film. After me fumbling with the tech equipment for 20 minutes and cursing under my breath far too much - I gave her a rundown of what was going to happen. I wanted her to talk freely about her mom's diagnosis and anything related to it: how has it made her feel, her friends' reactions, awkward situations, etc..

What I got instead was a quick 5 minute clip of her telling me that her mom doesn't really talk about her MS and that the disease hasn't really changed her life. I was thrown off a bit, to say the least. I guess in my mind, I was so ready to have these emotional testimonials. At the end of the filming, I knew what I had footage of was not what I wanted. I thought about just scrapping it all together. But, I saved it to my flash drive and said "Thank you so much for doing this."

"It hasn't really changed her life," haunted me. I thought about those words on the bus ride back to campus, on the walk to the library, and as I spoke to my mom on the phone. It confused me. How could a disease that has so heavily impacted my mother's life not have the same brutality on someone else's? It was - it is - a selfish thought, but an honest one.

Multiple Sclerosis does not affect any two patients the same. It is obnoxiously unique. I have been aware of this since the day my mom was diagnosed. Whenever people ask me about her diagnosis, I preface with "MS is different for everyone. Some for better, some for worse." But I never understood it. I realize that now, even 8 years after her diagnosis, I do not understand it. I do not understand why my mom lost feeling in her feet. I do not understand why she has a hard time using her hands. I do not understand why there are others who are doing better than her. Most of all, I do not understand why there are others doing worse.

When I filmed those 5 minutes, I didn't think I had captured anything of use. I thought I had wasted my and the girl's time. I felt guilty for making her ride the bus with me to film for absolutely nothing. But, it occurred to me that this was the reality of MS. And I made this ePortfolio, this website, to document the reality of MS.