In A Child’s Garden of Verses, Robert Louis Stevenson imagines a child’s bed as a boat transporting him on endless nighttime adventures. Ainsley Glenn can relate.
Her bed is her vessel, and her wifi enables boundless global connectivity, beyond the confines of her dimly lit bedroom.
Ainsley’s life changed forever on 8.16.2000, the day an SUV slammed into her vehicle. The impact ripped her lumbar spine and dislodged bone chips into her spinal cord, causing extensive nerve damage. But this was not immediately known.
Instead, Ainsley began a five-year battle for proper medical attention and diagnosis. She endured six back surgeries over two years and lives in constant pain. Because her injury went unidentified and untreated for so long, it caused her nervous system to malfunction. Ainsley has dysautonomia, which, for her, affects all body systems: cardiovascular, digestive, neurological, endocrine, autoimmune, sensory, etc. She had to learn to start life over with a disability. Noise, light, textures—all pain.
“Either I live in pain and be miserable, or I decide to use my skills to make a contribution," she explains. “My life is spent lying in bed in this room. Human beings are not meant to be isolated. I spent the first three years hiding, embarrassed and not wanting to be sick. I made the choice to turn my affliction into a purpose.”
Dysautonomia is considered a rare syndrome, and the average time to diagnosis is six years, with two additional years of waiting to see a specialist that’s trained and actually knows what it is. That’s too long. So Ainsley taught herself social media strategies, and, using her research background as a medical engineer, she began stockpiling data.
In July 2014, she founded the Dysautonomia Advocacy Foundation. A facebook page started it off and a month later a thirteen-member board was in place.
Dismissing the notion that she’s a leader, Ainsley reiterates, “I’m truly only as strong as the people that are standing with me. Sharing the stories from the Foundation’s page has been an easy sell for me. This syndrome affects children and adults. It’s underfunded and under-identified.”
She’s funny, charming, gracious and upbeat. How does she stay positive? “Faith. I had to find my own hope. And now I have the stories of others who are suffering the same thing, and they inspire me. Who knew that being in bed with a pain level of 9 every day, I could contribute? Light can shine in a dark room.”