I get to meet my hero at last, and all she wants to talk about is me
How do you tell someone your story when she has been part of it all along?
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Last week, I had the opportunity to meet a woman who has influenced my life for as long as I can remember.
I was starstruck and a little overwhelmed at the thought of talking to her. But when we met, she acted as though she was the one privileged to get to know me. She gushed with joy and energy, and said she wanted to hear my whole story. I didn’t know where to begin. How do you tell someone your story when they have been a part of it all along?
In the 1970s, she had an accident and became a quadriplegic. By the time I was diagnosed with spinal muscular atrophy (SMA) at 18 months in 1984, she was a young adult, traveling around the world, sharing hope and serving others. She was making a real dent in the universe, and long before I could explain what her example meant to me, I was paying attention.
I listened to her albums, read her books, admired her paintings, and wrote letters to her. Somewhere along the way, her outlook on life became my own. Although our stories of disability are different (a tragic accident versus a rare genetic disease), I found a special kinship with this lady in a wheelchair, very much like my own. Her influence was not confined to something I listened to or read; it became part of how I imagined my own future, and what I might dare to do with it.
A shared gift
She may be the most optimistic, positive person I’ve ever known. For all the pain and hardship she has endured in her life, she genuinely smiles and sings and talks about hope with so much conviction that I am humbled and challenged every time.
So many people have wondered how her joy is possible, and I have seen that it has a lot to do with how her passion and message are not just for herself. Her first priority is giving glory to God in everything she says and does, and she is constantly thinking about other people and what she can do to help them. She doesn’t have time to think about herself and all her woes! Even during our recent conversation, her mind was quick and vibrant with fresh ideas about how to serve others, and share what is good and true with them.
My mom tells me that when I was very little, I met this woman in person, and my mom sat me in her lap in her wheelchair. When I shared that memory with her last week, she laughed. Neither of us could believe that nearly 40 years had passed since that encounter. I had been trying to find a way to explain a lifetime of influence, and there was my mother’s story: the two of us together.
What had her message meant to me during those 40 years? I loved my friends, shared my faith, went away to college, pursued jobs that would serve others, and dared to do brave things. Those decisions were mine, but I also know that her example helped me see those choices as possibilities.
And then, when I finally had the chance to tell her, she wanted to listen. The woman whose story had helped shape mine was eager to hear what I had done with my own. I hope my answer was as much a gift to her as she is to me.
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.
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