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This topic has 1 reply, 1 voice, and was last updated 1 month, 2 weeks ago by Nikki.

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    • #24683
      Alyssa Silva

      Hey everyone. I wrote my latest column about something my mother once said about SMA. She was speaking out to a crowd of hundreds at my nonprofit organization’s annual gala, and the love in that room was palpable that night. She said, “SMA may weaken the muscles but it strengthens the heart.”

      I’ve cherished those words greatly ever since as they came during a dark period of my life. My body had been slipping, and I was beginning to truly resent my disease. I wrote all about it here, but those words felt like I was coming up for air after almost drowning. So, they hold a special place in my heart.

      Ever felt that way? Like you just don’t have it in you to accept SMA and you begin to actually hate it? What has helped you keep your head above water?

    • #24744

      Hi Alyssa, I’ve been dying to get to this column. This a beautiful piece, and brave. I’ll have you know, I’ve been there. In the past 4 years I’ve watched my body, my small yet vital independence just fade, as if it never had relevance. It was almost impossible for me to wrap my head around the reality of ‘continuing’. But one night I heard a beautiful song that told about being evergreen. The tears just fell out right there at the live show I was at! As this song made its way to my heart, all I really kept feeling was ‘life in me’. I have life, I am life. I went to bed that night playing the song over and over again. And the bottom line is, I realized then that if I choose, my heart can leave behind legacies, yes I wrote it plural on purpose. In a particular part of the lyrics it said “what do you say to get yourself into the day”. We have a choice! Your Mom nailed it! I believe we with SMA get hard lessons on what’s important and what parts of life are not. That’s what makes our hearts invincibly strong and resilient to bitterness and depression or despair.

      That’s my experience anyway. Keep believing sweetie 🙂

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