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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 1 reply, 2 voices, and was last updated 1 year ago by Ryan Berhar.

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    • #19913
      Brianna Albers
      Keymaster

      Hi everyone!

      Check out Alyssa’s latest column, “Why I View My Life As a Deck of Cards.” She compares life with SMA as a delicate house of cards. You can spend all your energy trying to build the perfect house, but you’re limited to the hand you’re dealt. When disaster strikes, and your house of cards comes tumbling down, there’s nothing you can do except to rebuild.

      I really like this metaphor, because it’s so true. As Alyssa says, we need to strike a balance between acknowledging the hand we’ve been dealt — and grapple with all the resultant emotions — as well as continue to build the house we want. It may not look like everyone else’s house, but they’re drawing from their own deck. All we can do is focus on the cards in front of us.

      How do you feel about this metaphor? Do you find it echoes your own circumstances?

    • #19937
      Ryan Berhar
      Member

      I love Alyssa’s writing, but I’m a bit confused with this one. Two metaphors are referenced—a hand of cards in a poker game, and building a house of cards. These are two different metaphors, and they seem to run together here. There are certainly some good nuggets, however, like life being more about how one reacts to circumstances than circumstances themselves.

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