It’s easy to discuss and concentrate on the lack of experiences one misses out on while living with a rare disease such as spinal muscular atrophy (SMA). The evidence of what this disease does isn’t hard to find. It speaks for itself in the way it displays its harsh effects on the physical body. You couldn’t hide it, not even with the perfect piece of clothing.
The distinct characteristics of this disease are out in the open for the world to take notice of. And although I cannot speak for others, It can be discouraging to venture out into unfamiliar territories, such as dating, careers, socializing, and more.
When you’re constantly feeling compared to what’s “normal,” it’s difficult to shake the narrow mindset SMA forcefully taunts you with.
This is a path I’ve merged on and off of for years. I woke up one morning, and I had a fire burning inside me. I knew that if I wanted to be successful in life, or create meaningful relationships, I had to stop viewing my situation as if I was already dead. God gifted me with a healthy, creative brain, and although I couldn’t physically express my skills, I found other alternatives to get the jobs done. I’ve learned to never waste a gifted skill, despite any limitation.
Read about HCP resources for SMA
Nevertheless, I’ve learned how to appreciate what SMA has taught me. It’s taught me how to be more assertive, how to network, and, most importantly, how to have empathy for those who are suffering similar or worse conditions. It boils down to the patterns of my thinking. I kept seeing SMA as such a curse. Don’t get me wrong, it’s no walk in the park; however, there are many things I’ve gotten to experience that without SMA, I wouldn’t have.
For instance, I was recently asked to be a guest on a podcast named “Mature by Accident.” I was a little hesitant at first because the hosts were individuals I graduated with and hadn’t seen or spoken to in years. And, right away, I let a bit of insecurity creep in, but I didn’t let it fester. If I wanted to take the easy way out, I could’ve ignored their invitation. However, I accepted.
Without a doubt, I made the right choice. We connected in so many ways and had such a fulfilling, genuine, and relaxed conversation. I commend them for their hard work and diligence to help facilitate spreading more awareness of medical conditions. Their goal for this segment was to educate people about SMA, and how one may experience living well with a rare disease.
I got to share with them how SMA affected me in different ways, during different seasons in my life. And although it has mostly impaired me, physically, it affected me more mentally and emotionally during my teenage years. Nonetheless, they were grateful I shared those moments because they explained that most teenagers are ignorant and don’t understand the complexities of a disease such as SMA at that age.
That is so true. I wasn’t even aware. It wasn’t my focus during those hormonal, crazy years. Anyway, we were able to cover some good topics.
Sharing my story on the podcast increased my self-worth. It provided me a way to use my disease for the good. The hosts Shashwat and Gina were so inviting and encouraging. They helped me walk away knowing that a smile can inspire.
With all that said, I just wanted to bring to light that you can always find the good in something that is not so good. SMA might be a big pain in the butt sometimes, but it can also be a gift. It can inspire, educate, and connect individuals from all walks of life.
Meanwhile, I will continue to keep a smile on my face if that means I can touch a life. And not to forget, if there is a will, there is a way. Continue to advocate, network, educate, and share your story. It could end up opening doors you never once thought possible. Tell SMA to get behind you and dream big and shoot for the stars.