I have spent forty years dancing with a disease that knows no hope. Doctors made that clear on diagnosis. As the start of my stem cell clinical trial draws near, I cannot let go of my wonder at what to expect. My mind is wide open. Sort of.
Stem cell therapy always had been about the future. When we participated in a large adult stem cell conference at the Vatican in April, it became clear that there are stem cell therapies being offered now. I am lucky to be part of a trial recently approved by the FDA.
But hope is a dangerous game. Bleak expectations have ruled my life. Faith in the future is fragile. But now it exists. If I allow it. The jury is out. Trust does not come easy. Ask Charlie Brown if he ever managed to kick that football.
Mine long has been a crisis of spirit. I had given up the fight against my status as a diminished man. Do not fight battles that cannot ne won.. The task has been to keep my spirits up and anxiety down. That was a slog. Every instinct in me has resisted playing victim. But what I would not put into words was clearly readable in my eyes.
The inevitability of physical decline has been a sad fact of life. There has been nothing anybody can do about it but endure the ride. With chronic conditions there is no necessary endpoint. It is not just MS. Many other horrible chronic illnesses are loose in the land. They are incurable, and the script of our lives has not yet been finished.
And so we learn to live with ambiguity. The ride is a descent of various angles and turns. My rate of decline most certainly will not match my neighbor’s. The speed varies. But we do not get better, or so we have been told. Until now.
Am I to believe my health will improve? I cannot go there. I am not ready. Maybe it will. Maybe not. My history has taught me well, that there only is disappointment and more disappointment. But somewhere inside, I do want to believe that all things are possible, and giving up hope leads to no answer, either.