SMA Strengthens the Heart
In a speech to hundreds of people at my nonprofit organization’s annual gala, my mother stood at the podium and delivered her words poignantly and eloquently. She has always had a way with words, knowing what to say at the right time while leaving the audience moved and inspired.
But this one particular time embedded itself into my heart and has echoed in my mind to this day. Years later, I still hear her up on that stage as she said, “SMA may weaken the muscles, but it strengthens the heart.”
It came out of left field, the feeling that someone unexpectedly served me a truth I never knew I so desperately needed to hear. I fought back tears in an attempt to avoid bruising my pride in front of hundreds of people. In reality, all I wanted to do was excuse myself and cry.
The year was 2016, and I was just four months shy of receiving my first dose of Spinraza (nusinersen). I didn’t know this at the time of the gala, of course. The possibility of ever receiving a treatment was still an intangible glimmer of hope and, quite frankly, one I was losing faith in.
I don’t enjoy recounting much of 2016, but the bottom line is simply this: I was fading. My body was declining at a rapid rate, I was losing what little function I had, and mentally, I had checked out.
The months leading up to receiving Spinraza were a blur of denial, anger, and resentment toward my disease. I was an enemy to my own body. SMA was weakening my muscles, and I was losing sight of the many blessings I had once known to be true, all byproducts of living with this disease. I was forgetting the many times it cultivated love and strengthened the heart.
The night of the gala, I glanced around the banquet room and saw people reach for tissues among the sounds of sniffling noses. Even though SMA tried to have the upper hand in life, that night was living proof of what happens when we choose to act out of love. My muscles may have been weakening at a haunting rate, but SMA would never rob me of the love that had been cultivated as a result.
My mother’s words are such an eloquent way of describing this disease. Being born with a disability means having to face many battles. But with every battle, I’m reminded that as long as I’m equipped with love, my disease will never win the war.
Life may not have come easily for me, but it also hasn’t stopped me from living to my truest potential. It hasn’t stopped me from strengthening my heart.
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