by Teresa Swartz Roberts
Blog post 2. Copyright 2016
I’ll get back to normal next week.
I had that thought this morning. I was doing my physical therapy exercises between breakfast and shower, which is way out of my routine. I don’t climb back into bed after breakfast; there’s too much danger of staying there. So I do my exercises first thing. Then I make the bed. Then I pack my husband’s lunch. Then I prepare my breakfast and meds and watch the morning news. But not today. Today my husband is out of town for work, and I am recovering from an intestinal virus. He had it first and got sick over a week ago, and nothing has been normal since.
It was then that I realized I’ve embraced my new normal. Parkinson’s normal.
This normal is not the one I thought I would have less than three weeks after my 55th birthday. What is normal for a 55-year-old woman? Based on my Facebook news feed, it can be posting cat photos, riding a zipline, getting a hip replaced, starting a second marriage, becoming an empty-nester, waking up with shingles, falling in love with a grandchild. I remember being in college and engaged when my mother turned 55. She had lost both her parents and completed her master’s degree since turning 54. When I came home from college to student teach in my home county and plan my wedding, she was ready for me to be an adult. It was time for a new phase in her life.
I have entered a new phase in my life. It’s my Parkinson’s phase, but it’s more than that. One thing about Parkinson’s, a spouse’s cancer, a parent’s dementia, a sibling’s accident, a child’s illness–they don’t wait for you to have time for them. As cliché as it sounds, life goes on.
I crave routine, ritual. As much as I like adventure, as much as I like learning something new, I am an old dog when it comes to new tricks. If anything, Parkinson’s has made me more that way. As I figure out how I want to spend my energy and time, I find myself wanting to do things the way I’ve always done them. Sometimes that is just plain silly. Why am I re-sorting the laundry when my family can sort when they take off their clothes? I’ve almost made that transition now. At least the permanent press is separated from the regular cycle clothing so that I can choose when to deal with the tyranny of wrinkle-prone khakis and Oxford shirts. You might wonder why I am even doing the laundry when my family would gladly do it for me. I want to. It’s something I can still do, and it encourages me to perform the kinds of movements that keep my limbs and back supple and combat my tremors. Maybe I am also still defining myself by laundry.
Defining myself is not easy these days. I have an idea of who I am. That person is helpful, creative, hard-working, stubborn, strong, independent, and loving. When the Parkinson’s was at its worst, before diagnosis, I was slipping away. I could not live up to the identity I had set up for myself. The only quality on the above list that I could manage was loving. I had to settle for still being able to love. I thought a lot about what that meant. Being is more important than doing. My family does not love me for what I can do; they love me for who I am. Think about it: I bet there are people in your life who are important simply for being. There certainly are those people in my life. If I can think that about others, shouldn’t it follow that I can believe that about myself?
Women have a habit of judging themselves by how clean their houses are. These are women who are educated or not, who work in high-powered jobs or not. I once wrote a poem about being home all day that included the line, “Can you appreciate that I am a house?” A friend whose family pitched in to help her with jobs she normally did around the house as she recuperated from an injury said she was not satisfied with the way her husband and son did the work. “People will think I don’t know how to dust,” she worried. It never occurred to her that a visitor might assume she didn’t do the dusting–or that dust might not matter to anyone but her–or that she did enough every day and should not worry about dusting.
I don’t worry so much about dusting anymore. Did I before? I don’t remember. This is the new normal.