By Teresa Swartz Roberts
Blog post 51. Copyright 2022
I was one of those people who always seem to be working. I would carry a briefcase and a stack of books home with me each night. As I got older, the books got heavier. By the time I was 40, I was carrying the load in a cross-body bag that seemed to spread out the weight. Then I wore sandals to a community theater rehearsal of A Christmas Carol, not realizing we’d be learning the Fezziwig choreography. I carried a good bit of extra weight on my body even without my stack of books. My feet complained loudly, screaming plantar fasciitis at me.
When I saw the orthopedist, he told me that my ankles were unusually stiff. I think that’s the first symptom of Parkinson’s Disease that I experienced. Almost 20 years later, I could tell when my PD meds were wearing off by the aches and stiffness in my ankles. I remember that when I was first injured, I had to make medical and physical therapy appointments around my work schedule. My job was serious to me. I would not miss work.
I remember moving to the futon in the living room at night because I couldn’t risk hitting my heel against the foot of the bed while kicking bad guys in my dreams. (Another symptom of Parkinson’s – acting out your dreams.) I missed sleeping with my husband, but I was able to fit in more paper grading while I dealt with pain-induced insomnia after he had gone to bed.
A few years later, my body began to feel different to me (Parkinson’s again, but I didn’t know it yet). I decided I wasn’t working hard enough on my fat but fit body. I made a plan to build a flagstone patio with stones we found in our back yard, where I think there had once been a New England stacked stone wall along a carriage path. Our lot was only about half an acre, but there were plenty of flat-ish stones. Enough stones for me to handle them in every wrong way and end up hurting myself. I tore the cartilage in my knee.
I remember that I had signed up for a conference in Massachusetts, and I realized that I would not be able to do all the walking between buildings the sessions would require. I called to talk to someone about accommodations, and then it dawned on me that I wouldn’t be able to drive there, anyway. I had to cancel. Five months later, after physical therapy did not alleviate the pain at all, it was time for surgery and my first time missing class. But not really, because I gave the students something to read and write about while I was gone.
Now, all this was going on while I was considering myself a full-time mother who happened to work full time. I was doing my share of the housework and other household management tasks, and I put priority on spending time with my son. My Honey and I supported The Boy by making sure we attended every concert, every play, every tee-ball game. My identity in our small western Maine town was often Jonah’s mom or Frank’s wife, and I didn’t mind. I love my family, and I enjoyed being part of it. However, I remember that it was always in the context of work.
When The Boy was eight years old, I was talking to him about how my paycheck allowed us to buy extras, in this case a special toy or science kit for him. He responded with “But you also get joy from teaching.” He was right. I did.
Now I look back (as people do when they slow down), and I think I might have worked too hard. But my work is still part of my identity. I write these blog posts because I am a writer. I try to take care of at least some of my family’s needs because I am Frank’s wife and Jonah’s mother. And now Courtney’s mother-in-law. And Grandpa Swartz’s daughter. And a sister and a cousin and–Well, you get the idea.
I clung to my job, my career, and I made accommodations for myself. I started using a luggage cart with a big tote bungee-corded to it. I could roll that cart all over campus with all of my papers and books inside. My laptop would fit in there, too. I had started using it with a projector to teach when it became too difficult to stand and write on the white board.
I bought extra copies of each of my textbooks to keep at home and arranged for a place to keep one in or near my classroom(s) and in my office/writing center. By the time I had my knee replaced, I had begun using online resources for pedagogical reasons. (It felt good to use the fancy academic word pedagogical just now. But it’s not very me.) My students seemed to be learning more when I sent them to solid online sources than when they had to use physical textbooks.
I remember practicing walking in a narrow hallway of my building at work when most people had gone home. I kept doing physical therapy exercises in the morning before work and at lunchtime. I kept working, but Parkinson’s was competing with my job for how much effort I could put in. By the time we moved to metro Atlanta and I was diagnosed, I wasn’t able to do the job well anymore. I had trouble multitasking, and it seemed that the only way I could get everything done was to do quite a bit at home. I still worked as hard as I could.
Then I didn’t work anymore. Not true. I didn’t have a job anymore.
I don’t like being asked “What do you do?” because my answer is pretty much that I spend my time having Parkinson’s. Perhaps you remember times in your life when you slowed down and wondered how you ever got everything done. I always found that I apparently expanded to fill whatever space was available. Now my Parkinson’s expands to fill my days.
My job is to keep myself myself. My pain specialist asks in his sign-in paperwork about how happy I am. My answer is always, “I work at being happy.” I exercise my body, face, voice, swallowing muscles, mind, and spirit. I figure out ways to connect with people. I love my family, and I show it.
I don’t do much. But I work at it.