Thursday, August 16, 2018

SMA Awareness Month: Other Perspectives, Part 2

For the second guest post in my series for SMA Awareness Month, meet Alex. She and I met through Instagram, and I'm excited she agreed to share her SMA story with us!
SMA is a huge part of my daily life and affects almost every move I make, but hardly ever crosses my mind, except for very recently. Two major things have made me think about SMA in a meaningful way: I just started receiving Spinraza, and August being SMA Awareness Month.

I’ve been flooded with a sea of emotions as my first Spinraza injection date approached at the speed of lightning. The week preceding my first injection flew by faster than any week in my entire life. During that week, I thought about how my life is going to be forever changed due to this new shiny, very expensive drug that is saving other people who have my disease.


Growing up with SMA, I had a seemingly normal childhood. I was what they call a “strong” SMA Type II — meaning I was strong for the type of SMA that I was diagnosed with. My most joyful memories involved swimming. In the water, my body was free of my wheelchair and moved with ease in the weightlessness of the water. My friends and I would spend countless hours during the summertime being little fishies, having our parents drag us out of the pool as dusk would arrive after seeing our very pruny fingers.

I’ve always had a very headstrong and determined attitude, which translated into an angry, rebellious teenager. The administration of my high school made it a point to make sure I was treated like my disability was the only part of me they saw. The logical thing for a teenager to do in this type of suppressed environment is to rebel, and that’s exactly what I did. Rebelling revived my sense of autonomy that the school was so quick to take away, which is one of the most detrimental things you can do to someone with a disability. But, things got better.

I went away to college - five hours away from home to Southern Illinois University in Carbondale, Illinois. Many people praised my mom for my bravery for going so far from home all on my own, not knowing anyone. My thought process as my parents dropped me off that very muggy and humid hot August day: “I’m free and can do my own thing finally. Oh, there’s a cute boy, this is going to be fun.” I’m sure many other freshman had a very similar thought process. After all, we are the eager minds of tomorrow...

During college, I learned to manage my personal care, which was my biggest challenge and still is. Relying on people your age and younger to show up when you have to eat, use the bathroom, or get in bed poses its challenges. But I learned. I developed a system and mindset that worked. After failing 3/4 of my classes my first semester and going to a few dozen frat parties, to becoming a model student on the Dean’s list, winning a scholarship, and starting my own student organization, I graduated with a degree in Rehabilitation Services.

I then began a new post-college journey living in the city of Chicago a year ago. After applying to jobs in my field with no success and having one of those enlightening life changing moments, I became an Instagram blogger and business owner. I started sharing my life with the world through some photos and blog posts on Instagram which started gaining traction. I started developing “fans” and people who believed in me and were inspired by my life. Because of that support and social media traction, I was able to start WheelchairRapunzel & Co., which is my online shop where I sell my Love Your Genes merchandise. While Love Your Genes was conceptualized on the basis that I have a genetic disease, it has turned into an all inclusive movement of acceptance and empowerment. Genes are what makes your beautiful self, you.

Life never goes as planned, especially when you have SMA. But, I’m so thankful it has led me here, to SMA Awareness Month. To me receiving my second Spinraza injection. To my company that was created because of my disease, raising money for my disease. This month I’m donating a portion of every WheelchairRapunzel & Co. order to CureSMA, because a cure is within reach, and that is something we can plan for. You can go here to shop and support SMA research all month long

1 comment:

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