I’d like to say that I started this company because of my altruistic interest in helping the world.
That would be a lie.
I started this company because over six short months my son went from healthy to hiding under his covers, in the dark, wearing welding glasses. He would shudder with pain because his body interpreted the sound of a cat walking across a rug in another room as an assault. Dim light caused him the kind of pain you got when a spotlight hits you full in the face. And nothing – nothing – stopped that awful driving pain. Eventually, he lived with the equivalent of an ice cream headache that went on for days and, eventually weeks and months at a time.
The longer he stayed in bed and the longer he hid from sensation, the worse he got. My son was becoming Gollum – hiding in his cave from the light.
No meds worked. His doctors – great doctors! – told me if he stayed in bed or if I home schooled home, just BEING in bed would lead to a vicious cycle of progressive weakness, sensitivity, and pain.
I was . . . . there are no words to describe how I was. My beautiful son in ways I couldn’t imagine and I felt helpless before the pain’s onslaught. The first words I said to my husband each morning became “How is he?” instead of “I love you”. Phone calls and internet searches ate hours out of my time at work each day.
I found support groups on-line. I cannot thank the “desperate moms of Facebook” enough. They kept me sane, buoyed me up, helped me find ways to help my son and myself. They were the ones who understood what a triumph it was when your teen made it from the bed to the couch. Or ate with the family. Or SHOWERED!
I spent hours every day trying to coax, cajole, and push my son back towards a reasonable life. I spent more time researching every single source I could find to better understanding what could possibly be causing his pain. I spent hours with husband, doctors, physical therapists, acupuncturists, pain therapists and anyone else willing to help.
And, because I’m the kind of person who copes with stress with a flurry of activity, I took my research program on adolescent-parent relationships and turned it towards understanding how parents and kids cope with chronic pain. That work continues to move forward. The app we’re developing is one of its outcomes.