For some time we have been describing the history of the Life Raft Group as being built upon hundreds of love stories. Parents for their children. Husbands for their wives. Lovers for their soul mates.
And so it is.
Yes, we continue to push science to the brink, advocacy to the edge and caring to the boundaries of exhaustion to provide cover for our love stories to go on.
Many defining moments capture my memory of such love stories. Two will have to serve as examples.
There was Mike’s tale: Knowing he had very little time left Mike asked his friends to throw him a going away party at their community club in Nova Scotia. I arrive in late afternoon as their guest and as their surprise for Mike. The scene is surreal. Mike is sitting in an old large chair his friends have brought from his living room. His daughter is sitting at his feet rubbing his legs. And the music, that wonderful music from the sixties plays on for the dozens of dancers determined to make this a great party. And then, Mike gets up and with what little strength he has left asks his wife to dance. Everyone stops. Just the music goes on.
Later that evening Mike is in his hospital bed propped up by a picture window. We stay up late talking into the night, holding hands.
It is time to go. And as my plane descends into LaGuardia airport in NYC Mike dies. His last dance lingers in my memory on the ride back to my home.
My Anita had reached her 16th year on Gleevec and was struggling to overcome a relentless series of medical assaults on her frail body. Multiple infections, hypotension, a stroke precipitating trip after trip to the hospital, rehab. facility, and back. Finally home, she asks me to promise never to send her to a hospital again. She somehow remains cheerful, sometimes faking it so as not to worry me (we had an unwritten pact about such things: she pretended not to be depressed or in pain: I pretended not to notice; kind of like parents and children about the tooth fairy leaving a present under the pillow).
Life revolved around the hospital bed and equipment in our guest bedroom. Nurse’s aides stood watch 12 hours a day starting at eight in the morning. Sleep mercifully guarded her much of the evening and night. But at around two a.m. I would hear her voice calling out, “Norman, come change me.”
That was when I understood what the highest level of love and commitment really meant.
It’s been about fourteen months since Anita called out to me. What I would not give to hear that again.
I hate asking anyone to donate money to the work of the Life Raft Group, but we need your help to continue to provide gifts of time to those GIST patients struggling to stay alive and well. Each day does in fact bring us closer to better treatments and eventually to a cure.
Thanks for listening.
Thanks for helping. We have had enough last dances.
Norman Scherzer, Executive Director of the Life Raft Group
