Actually, My Disease Does Define Me
Recently, someone I know commented, “Alyssa doesn’t let her disease define her.”
I absolutely understood where they were coming from. After all, I have always been determined. I have always been that girl who thrives in a challenge and loves nothing more than being told she can’t do something. (Spoiler alert: I can and will, and words like these only fuel me to work harder.)
The comment was harmless and well-intended. But the truth is that many aspects of my life, including my attitude and how I respond to challenges, are very much defined by living with SMA.
I know a disclaimer is always included at the end of my column, but I want to stress that my beliefs about SMA defining me are my own. Many have mixed feelings about this, and that’s OK. Personally, I see SMA as part of my identity, not my entire identity. The most beautiful thing about the human race is that we’re all multifaceted beings, which is what makes us so unique. My disease is just a part of my uniqueness, and I find that beautiful.
To me, saying my disease doesn’t define me feels as though I’m not living in my truth. Most of my day revolves around SMA. Whether it’s a doctor’s appointment, caregiver management, rest breaks during work, and so on, SMA influences most of my actions, whether I realize it or not.
At the same time, it has also influenced who I am as a person. My disease has taught me to be resilient. I’ve had many dark days in my life, but in choosing to fight instead of flee, I cultivated resilience. This helped to build character. My disease has taught me to be more compassionate and grateful toward others and myself. This helped to build kindness. My disease has taught me to be the kind of person who shows up for others after knowing the joy of others showing up for me. This helped to build community. The list of what SMA has shaped is truly endless.
Saying SMA doesn’t define me discounts all the hard work that has gone into creating this little life of mine that I love deeply. Instead, I’m proud of the influence SMA has had on me. I’m proud that it has defined my life.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
Hey Alyssa - Nice column. I understand where you're coming from. However, words and semantics matter. When someone says something defines you, they actually do mean it as your entire identity, not just part of it. Just the opposite of how you apply the definition. That's why people don't say "SMA doesn't define me". It's so limiting, even if you want to use your own interpretation of it. I believe you're being connotative, not denotative. So, "Actually" or literally, it doesn't define you; figuratively, it does. :-)
Mike Huddleston (from the forum)