By Teresa Swartz Roberts
Blog post 11. Copyright 2016
*I feel a disturbance in the Force. I wrote this month’s blog about life through the lens of Parkinson’s Disease before Carrie Fisher and Debbie Reynolds passed away. I respect them and their work in entertainment and publishing. They were icons of feminine strength for multiple generations. They will be missed by everyone, not just geeks like me.*
I am such a geek. Look at the books I have checked out of the public library right now: a Doctor Who graphic novel, an art book about Steampunk, a British police procedural murder mystery, and a collection of award-winning science fiction stories. I also have an audiobook on my phone and a digital book on my iPad and phone Kindle apps. My favorite book right now is the third installment of a paperback trilogy about geeks, although they’re called ‘mancers in the book’s universe.
Today I unwound during the afternoon by watching The Empire Strikes Back, which I DVRed a while back. I don’t remember seeing it since it came out in 1980, but I seem to know so many of the lines. “Do. Or do not. There is no try.” I’m even more of a geek about Star Trek, which I still watch in its original form (except that I’ve noticed minutes are cut from episodes to make more room for commercials) every Saturday night before Svengoolie. I’m Netflixing Deep Space 9 and Voyager, too. My son gave me a pair of tribble slippers one Christmas, and this year I received a Star Trek coloring book and a Serenity coloring book to add to my collection of Doctor Who, Harry Potter, and Sherlock.
I am passionate about some things that don’t seem to matter. And I don’t need to apologize for that. In fact, it’s one of my defining qualities.
I’m a grammar nerd and a news nerd and a radio nerd, and I have been blessed to work at jobs dealing with all three. These days I retain the nerd-dom without the jobs. Which pretty much brings me to a point. (And yes, that was an intentional sentence fragment.) I am passionate about some things that don’t seem to matter. And I don’t need to apologize for that. In fact, it’s one of my defining qualities. I know what’s important, but after Loved Ones and God (who is Love itself) comes a different kind of love that boils down to loving life, loving myself.
My loves and how I celebrate them have changed. I love food, but food and I had an abusive relationship, so when I had had enough, I spent five years losing 100 pounds. I am an addict, and food is my drug, so I must not allow my trigger foods into my home. My husband has always been a better cook than I am, and he has done most of the cooking for more than half our marriage. Now I am taking over most of that chore and treating it sometimes as a creative challenge. I want to serve delicious and nutritious food that doesn’t break our bank account, so I peruse cookbooks for recipes that use the ingredients on sale at Kroger this week. Although I am still a foodie, I have changed my relationship with food. And that’s okay.
I love theatre. I spell it that archaic way because I love theatre in an old-fashioned way, deeply. Attending live performances now that I have Parkinson’s can be complicated. I need the right kind of seat to be comfortable. I need to be able to move in order to control my tremors. I need to get up and walk more often than intermissions usually happen, and I can’t afford to let an urge to go to the bathroom become an emergency. The old me acted (I even had a role written for me.) and directed and taught drama and served on community theatre boards. Now I support theatre in spirit and watch movies on Netflix and sometimes on the big screen. While I am a theatre geek from way back, I have changed my relationship with theatre. And that’s okay.
I love dance. When I was a little girl, I could not keep from moving when there was music. Once public television became available through UHF broadcast, I would play with the knobs on our old black-and-white TV for however long it took to be able to watch ballet. I begged to take dance lessons, and my mother finally caved and found a way to make it work. I graduated from the Lake School of Dance after seven years of study. I learned folk dancing in 4-H and attended dance camps just as my mother had when she was young. I welcomed disco because it got people up onto the dance floor. I still love dance. Can I move the way I did as a little girl or young woman? No, but two nights ago I smiled the whole time I wiggled and stomped around to the Temptations. I have changed my relationship with dance. And that’s okay.
Nowadays I put time and energy into staving off Parkinson’s Disease symptoms with physical and speech therapies and work out at a pool and a gym. I’m obsessive, kind of geeky, about my exercises and therapies. I’m constantly learning more about myself. I’m also learning at Bible study and Sunday School just how little I know about my religion. I am learning to paint and am part of a painting class/group, and I paint with a friend from time to time. I’m learning how important relationships are: My family is wonderful, and I value my friendships. I check Facebook daily to connect with faraway family and friends. Am I working? Yes, if you count scrubbing the toilet and folding laundry. Am I doing enough? No. Never in my whole life have I done enough.
Even if I’m lacking in doing what’s expected, whether that expectation is from society or from myself, I want to hold onto my sometimes trivial interests and passions. After I finish writing up this leg of my journey with Parkinson’s, maybe I’ll put in a load of laundry. After that, or maybe instead of that, I’m likely to pull out my Star Trek coloring book and look for the page that shows Ricardo Montalban as Khan so that I can use my new metallic pencils to color his shiny gold jacket. Coloring is good fine motor therapy, and I am a nerd. I am me. I have changed my relationship with life. And that’s okay.
Life through the Lens of Parkinson's 