When your abilities start getting stolen away from you, it’s a bit like the violation of a thief. One takes inventory of what is going, or has gone, missing. This then gets linked with the amount of effort and the amount of joy that one has put into the abilities that are being carried out the door. Mary and I have gotten pretty accustomed to dealing with the ongoing thievery, finding new ways to continue to enjoy life but now, we’re up against a more difficult wall.
Losing the ability to talk is difficult, but the biggest kicker so far, the elephant in the room, is that I am losing the ability to swallow my saliva. Such a seemingly small thing. Whoever gives it much thought? But it keeps coming. It’s nonstop. Makes me have to cough, which I can’t do. I try to ignore it but it makes me feel bad because something is in my lungs. On rare occasions, I’ve started to have choking fits where I’m gasping for air which sends my wife, Mary, into the stressful hurry of taking care of the problem. Of course it’s hard for me but it is actually harder on her as she is the one who must deal with and solve the emergency. There are medications to reduce saliva, and I am on some of them, but they seem to present a trade off. They turn down the volume of secretions but make them much thicker, making what you do have impossible to swallow. It’s a balancing act that has no clear solution.
The mental stress this creates has much to do with the feeling of winning and losing. We have worked very hard over the past five or six years to find a work around to whatever problem is now at hand, most of that falling on Mary lately. She has gotten very good at it. The notion that, at some point, we can’t keep winning forever is tough on the psyche.
Though we’ve had to deal with worrisome difficulties over the last number of days, we actually do feel like we are having joyful moments and that most of each day is good. Love, that’s winning.