Living Well With PD While Raising A Family
My family is small; it’s me, my 8 year old daughter, and our two cats, Mouse and Gigi. Having a small family while having Parkinson’s disease is hard, and harder during COVID. My strategies for getting by in the pre-COVID era have been strained, stretched, or just thrown out the window. I was used to relying on lots of help from my friends – cue the Beatles song here – and by outsourcing household chores like cleaning the house. It was a tenuous balance at best – or as I would say, a juggle where sometimes balls got dropped. But juggling is a practice, and I would pick up the balls and start again. COVID however, felt like juggling while traveling in an open-air train car during a hurricane. The balls were being blown out of my hands or carried away by the wind. It felt dangerous there for a while. Days rolled into weeks and dust bunnies turned into dust monsters. My temper was short, my on-times were shorter. To be honest, I’m not quite sure how we made it through those first few months with most things intact. In part, as I only half-jokingly said to my neighbor, I did it by cutting corners and lowering expectations. I wasn’t “working from home”, I was surviving a pandemic while trying to keep up with some work. I wasn’t “homeschooling”, I was supporting my daughter while we survived the pandemic together. Some sourdough bread was made in the process; some sourdough bread was also used for doorstops. Some hikes were taken, and those that were got well-documented for social media. Sometimes, those social media posts are as much to prove to oneself that things are going well as much as they are to share moments with others.
One thing that really helped though, was helping others. During the dark first days of the pandemic, I was at home, while colleagues were still at the community mental health center where I work, taking care of those who were on the inpatient unit. Friends who work in medicine were doing long shifts in the ER. I felt helpless and at loose ends, but finally rallied my small group of mom and dad friends to chip in and send a series of meals and cupcakes to those working so hard under such scary conditions as they were in Connecticut in March and April. After the cupcakes were delivered the baker -- who had seen me through my pregnancy and many a birthday with her sweet treats -- reported the ER staff had been so grateful for her goodies that she cried on the way home. II felt a shift in myself, a bit more hopeful. My daughter and I took on a project of creating 40 masks to hand out to patients at the mental health center. We had an assembly line going in our dining room; she ironed, I sewed, the sewing machine broke down, I tried not to curse too much, and we played rap music to keep us going. MC Hammer’s “Can’t Touch This” was met with my daughter asking, “Is he talking about Covid, Mom?” We managed to crank out the 40 masks over a week, and proudly delivered them. Doing something, a small thing, a big thing, made a difference.
We did make it through, and dare I say we feel more grateful on the other side of things? I don’t mean to completely Pollyanna the situation, but I will say I didn’t realize how good things were before COVID. And it has led me to realize how important my family and my friends, are to me, how lucky I am. There are more off times, there are daily challenges, the dust monsters still threaten, no doubt. But the motto of “keep moving”, doing something, just about anything, helps keep all kinds of monsters at bay.
Rebecca Miller, PhD, has attended the WPC as a participant and presenter and was part of the WPC 2016 Program Committee. She lives with Parkinson's disease. She is currently Assistant Professor of Psychiatry; Director, Peer Support & Family Initiatives, CMHC at Yale School of Medicine. She will be speaking on this topic at the WPC Virtual Congress.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®