Thursday, September 19, 2019
Blog Posts

My Reaction to Finding out There Is a Treatment for My Disease

Fear.

Was I not exclaiming with joy? Well, a part of me was. Those of you who know me also know that Angie’s Hope, an organization that my friends and I co-founded back in 2007, is a huge part of my life. For the past decade, we’ve been devoting an incredible amount of time and energy into pulling off annual fundraisers to raise money and awareness for a cure for Spinal Muscular Atrophy, the disease I was born with. The organization is called Angie’s Hope for a reason – it was my great hope that some kind of treatment or cure would be developed for this rare disease. However, it wasn’t until the FDA approved the first ever treatment for SMA a few days ago that I realized I had been treating all of this work that I put into fundraising as some abstract concept. I knew it was for a great cause, and I loved the idea of helping other people and contributing to something larger than myself, yet deep down I had an infinite amount of doubt. I thought we were working towards something that would never happen or would happen very far in the future, but it happened. It happened a few days ago. Even when I heard that it had happened, I was happy for the organizations of Angie’s Hope and Cure SMA, for my friends and family who wanted this so badly for me, for the children and adults around the world affected by SMA, but not necessarily for myself. In fact, it took me a while to realize that this actually directly and profoundly affects me as an individual. And then I was filled with fear.

The treatment, called Spinraza, is a series of spinal injections that, in extremely simplified terms, works as therapy to potentially help gain patients some strength and/or prevent the disease from getting worse. Why wouldn’t I immediately cry of happiness and look for ways to get this treatment for myself? Besides the fact that “spinal injection” sounded terrifying to me, I was scared because this would mean I would have to stray away from my normal life. People always ask me what it’s like not to live a “normal” life, or if I sometimes get upset that I can’t do what other people can “normally” do. I believe that the word “normal” is subjective, not definitive. For me, not being able to walk, as well as everything else that comes along with having SMA, is normal. For me, not having a cure or treatment for SMA is normal. For me, not having to go get a spinal injection every four months is normal. Spinraza came and shook up my norm, and it scared me.

I was also scared because I didn’t want to get my hopes up. As soon as Spinraza came out, I inevitably began imagining things – I started by picturing what it would be like to open a marker for myself or lift my arm a little higher, then my thoughts escalated to imagining myself running over to my friends to hug them or jumping up and down. Gosh darn it. When there was no treatment for the disease, it had been no use imagining such things, but now that the possibility became a reality, I kept thinking, “What if?” I know that even with Spinraza, these visions would probably not become a complete reality, and I’m truly okay with that, as I always have been. However, as everyone has experienced at some point in different contexts, “what if” scenarios are terrifying, for the last thing we want to do it get our hopes up and get let down.

However, while I was reflecting on such thoughts and fears, it occurred to me that I was, in a sense, being extremely petty. Although I still believe my fears are absolutely valid and fair, I realized that the fact that I’m 100% comfortable living with this disease, the fact that I’m able to consider my life normal, the fact that I even have the ability to get my hopes up, are all amazing testaments to how incredibly blessed I am. I have amazing friends who love me and don’t even notice my disease at this point, an unbelievably wonderful family who allow me to live out my normal life, and an everlasting God who’s got my back. There are probably people out there with the same condition as me that would do anything to try out this new treatment. Upon recognizing this, my fear transformed into an overwhelming sense of gratitude. 

So, to all the people I mentioned above – my friends, family, supporters of Angie’s Hope, workers at Cure SMA, researchers who developed Spinraza, and anyone who else has impacted my life positively in any way, shape, or form – thank you.

This is some flippin’ great news.

For more information on Spinraza, visit http://www.curesma.org/news/spinraza-approved.html 

Leave a Reply

Your email address will not be published. Required fields are marked *

Back To Top