A friend who gave a presentation at church on Sunday commented afterward that, as he was talking, he had been unable to read my reaction. At first I was surprised, for I was thoroughly engaged with what he had been saying. Then it dawned on me…Parkinsons.
One of the effects of Parkinsons is that you lose facial expression. So on the inside I might be smiling but on the outside I might appear dour. On the inside I might be totally engrossed but on the outside appear disinterested.
While it’s relatively mild at present it will grow worse. It might make me good at poker, but I’m not sure it’ll be much use otherwise. In fact, for someone who has spent a large part of my lifetime in public speaking it is rather disconcerting. As with other side effects of this disease I guess I’ll find a way to compensate.
One thing it does highlight to me is how thankful I am to have family, friends and colleagues who already know me and who won’t be fooled by my increasingly expert poker face. I always imagined it would be humiliating to deteriorate in front of others and become less independent. And maybe that time will come. But rather than humiliation, I am finding it is tremendously humbling, in the good sense of being genuinely enriched by the grace and love shown to me in a myriad of small ways: to have someone see the flicker of emotion that my face used to display ever so clearly and pause to ask how I am; to have a friend offer to open the chip packet that my feeble right hand struggles with; to have someone carry that second cup that I will only spill; to have a colleague bring me a fork and spoon because they know I can no longer eat with chopsticks. I am discovering that in my weakness I am privileged with the small acts of kindness that make life immeasurably rich and rewarding. To all those who have shown and continue to show me such grace, thankyou.
when I literally cannot open toothpaste or squeeze it out sometimes – with the severe rheumatoid arthritis, I shall think of your article and smile on your behalf and think of you giving your friendly greetings to me at BWAA long ago. Wendy.