How does it feel to have Parkinson’s Disease – Revisited

It seems like I always start from the place that having a chronic illness like PD “feels bad.” In fact it’s more complicated than that. There is some physical pain, and I suppose that this really does feel bad. But it’s more accurate to say that I feel clumsy and exhausted and shaky. Typing is difficult; writing with a pencil is impossible. I have to think consciously about swallowing, and about talking loud enough to be heard. I have to be careful about getting up from sitting at my desk. Buttoning a shirt is pretty difficult, offering a tender and loving touch to a friend is complicated.

Each of these symptoms has felt pretty terrible: realizing that I’m losing yet another increment of my ability to be independent, that there’s another thing I have to be conscious about. It feels especially awful that I can’t control any of these symptoms, that I am forced to be “out” about the whole process whether I like it or not (usually I don’t like it!) These feelings seem entirely reasonable to me, given that we live in a culture that does not value age, that is scared to see disability, and that values independence above all else.

But most of this distress is about my emotional reaction to my physical symptoms, rather than about the symptoms themselves. Difficulty typing, for example, is really neither a good nor a bad thing in itself. I can imagine – although I don’t feel – gratitude for the need to slow down. Even the physical pain is worse for the emotions it brings up.

This opens up the possibility of making peace with the situation: if not completely accepting each increment of loss, at least facing it with some degree of calmness. If the barriers to accepting my situation are all really about fear of diminishment, rejection and death, then it seems essential to do what I would do when a lover leaves me or when I lose a friend to disease. Grieve. Consciously. And then to the extent that I have done this and achieved some clarity around it, hold space for my friends to do the same.

Is conscious grieving a form of meditation? Or can it be? What has your experience been?

— Dale Bennett