As my oldest son Alex’s high school graduation day nears, I am stressing out over a day which, when I received my diagnosis of Parkinson’s disease (PD) nearly eleven years ago, I thought I might not live to see.
It has suddenly hit me that at 45, I have been diagnosed with PD for nearly one-quarter of my life. Neither Alex nor Bennett has known me without Parkinson’s. Together, we’ve gotten an education in living with PD.
Parkinson’s disease teaches lessons that aren’t typically taught at school. Sure, the “3 R’s” are part of the curriculum—“Reading” everything I can about the disease; “wRiting” articles and editorials to educate others about PD; and “’Rithmetic,” counting out the right number of pills and calculating times for medications.
My family and I have also learned about compassion. My sons have learned how to offer help to someone who is struggling to put on their coat or carry a plate of food across the room, and I am learning how to accept that help.
In the Little Prince, Antoine de Saint Exupery wrote, “What is essential is invisible to the eye.” We have learned that we should not judge others by their appearance. I may have a masked/blank expression, so please ask me how I feel, rather than using the conventional visual cues. The way a person looks or moves is not who they are. The real person is trapped inside a body that has been possessed by Parkinson’s.
The “what is essential is invisible” philosophy applies to housework, too. I used to get very stressed out, trying to make my house look like the perfect homes seen on TV. Now that I have mostly accepted the fact that Martha Stewart is never going to drop by for tea, I’ve let go of some of the more obsessive chores so that I can hang out with my kids or do something I enjoy.
We are learning a lot about independence and dependence. My husband and sons are finding that they can do many things for themselves, like doing laundry or making treats to bring to school; I am learning to ask for and accept help with chores, such as doing laundry.
The most important concept we’ve learned is gratitude. Despite having PD, I am blessed with an extraordinary family and group of friends. I have a home, health insurance, and my husband’s job seems relatively stable. There are so many people here in Minnesota and around the world, who have far fewer resources and much bigger problems. We really have a very good life, and we are trying to remember that each day.
All four of us are getting our degree in Parkinson’s Disease, a school that none of us would have chosen. But I like to think that we are earning another P.D. degree as well: Personal Dignity. I believe that this learning has been just as important, if not more so, than my son’s high school education.
"Speak the truth, even if your voice shakes." — Maggie Kuehn, Gray Panthers