(I originally wrote the following for an organization that was really interested, then lost it, then had a staffing change, and then passed my writing on to somebody else who never looked at it. I’ve claimed my story back.)
My mother, Kathy, doesn’t often arrive anywhere before I do, so I was happily surprised to see her car parked in front of the restaurant while I searched for a parking spot. She recommended talking over dinner when I shared with her I that wanted to write this story about how she manages work with Parkinson’s Disease. We agreed to meet here, half way between our homes. I order sushi, she orders shrimp tempura.
Mrs. D-J, as she is known, teaches sixth grade in Sedro-Woolley, a small town in Washington famous for its Loggerodeo. Both her and my retired friends assure us that there is plenty to do in retirement, but the truth is that toward the end of summer the days get shorter and Kathy begins to think about the growth her students make throughout the school year. This prompts a return to the classroom to arrange desks and a visit to Human Resources, along with a Union representative, to discuss progression of the disease and what support can be provided.
“The Association representative goes to your HR meeting with you?”
“Yes, she advises me on what to say and what not to say.”
“Have you had a problem with your HR?”
“No, I’ve never had a problem with HR.”
Our food arrives and our waitress asks Mom if she would like a fork, or if she’s happy with the chopsticks provided. “The chopsticks are fine.”
Kathy dives into her salad and explains to me that having a para-educator for a few hours a day was a decision made the first time she spoke to HR about the disease. My mother has been diagnosed with Parkinson’s for at least a decade. It took her a good year to tell me, longer to tell her friends and cousins. She hasn’t had a para-educator in her class for more than a couple of years, or at least not one to support her disability.
“I read one day that if you don’t tell HR about your disease, when you really need help they can claim ‘Well, you didn’t tell us.’ My co-workers are very supportive, nobody complains that I have extra help in the classroom.”
“Are you sure? How do you know that?”
“I’ve asked and they tell me that it is obvious I need help, they can see my disability. It might be different if I had MS.” We had attended a disability workshop for Multiple Sclerosis disability pay several years ago, and left if very thankful that MS hadn’t been my mother’s diagnosis. We now compare everything to MS. It gets us through hard times.
I thought about this for a moment. “I remember that your Neurologist suggested that you talk about your disease or people who know you might start to justify your problems and misdiagnose you as being alcoholic.”
“Yes, all of my co-workers know.”
My mother’s para-educators’ primary responsibility is to grade papers and complete paperwork, such as entering grades into the database. Handwriting, typing, and controlling the computer mouse are typical struggles with Parkinson’s. Teachers are responsible for writing their lesson plans, navigating state standards, writing out instructions for substitute teachers, responding to emails, writing self-evaluations, etc. Having the help frees up some extra time to balance out the extra time it takes to type out the simplest instructions. She lifts her hands to show me that the stiffness in her fingers has progressed, then returns to using her chopsticks.
“What do you do when you can’t work on the computer and your para isn’t around?”
“I do something else. One thing about education is there is always something to do.” The para-educator also watches in the morning and if it doesn’t look like she took her medication, she reminds her to take it. “I also don’t have to call the office if I need to use the restroom.” This last statement horrifies me.
“What about when she isn’t there?”
“I tell my companion teacher next door, we watch each other’s classrooms from the walkway outside, or I call the office.”
“How do you talk with your students about your disease? Do they have a lot of questions?”
“Oh, I discuss Parkinson’s on the first day of school. They usually do not have many questions. Sixth graders are thinking a lot about themselves, but they are consistent about reminding me to take my medication. They have experience watching me shake pretty bad. A few years ago, I had a student who watched me very intently while I presented a lesson and when I was done he said ‘When you’re teaching and moving around you don’t shake, but when you put your arms down you do. Why is that?’ and I said ‘I don’t know, maybe someday you’ll be a neuroscientist and you can figure that out.’”
“Do you tell their parents?”
“No, I don’t tell their parents but some of them tell their parents. One girl watched a show about Parkinson’s with her mom once and told her mom afterward that I had Parkinson’s. The mother came to me and told me that she had had a teacher with Parkinson’s.”
“Is there anything else? You’re still on committees in the district and you’re a Washington Science Fellow.”
“I do go to bed really early now.” We pay our bills and she suddenly sits up a little straighter and a smile breaks through. “Every year sixth graders go to Camp Orkila. I still climb the tree and walk across the log, I do the high ropes course. I can walk up and down the hill. We’re going again in a month.”
As we put on our coats I wonder about this log walking, tree climbing and high ropes. She was afraid to let me near heights when I was a girl and anxious that I raised my kids rock climbing, however I was always aloud to climb a tree. My mother is a determined woman and I am proud that she is setting an example to her students to not give in. Asking for help can be hard, but not asking could prevent you from doing something you want, or need, to do.
We walk out and I notice my taillight is barely on. “Hey Mom, can you help me jump my car?”