Good Days
In my younger years, I was well all the time. In the park across the street, at school, playing basketball, I was ready for whatever the day included.
Unless I was sick, of course, which I was for almost half of my first-grade year. I missed so many of Mrs. Gurley’s classes that my parents thought I might have to repeat first grade. All those days absent were due to recurrent tonsillitis and ear infections. They disappeared following a tonsillectomy that summer. With drip ether anesthesia in 1957!
I heard many years later in medical school that parents too frequently rush to tonsillectomy, but for me, it was almost as life-changing as deep brain stimulation, or DBS, would be for living with Parkinson’s.
Good Teachers
I missed one day in second grade, then a total of about five days in grades 3 through 7 (we had seven grades in elementary school in Dallas back then). I missed zero days of my 7th-grade year with Mrs. Bryan, probably my best teacher of all time.
Throughout high school, I had a bunch of good teachers. And the same was true for my time in college, medical school, and when completing graduate work, but none got the best out of me like Mrs. Bryan. She taught us to respect ourselves and each other, to carry ourselves properly, and she treated us all as young adults, not just kids.
She also expected a great deal. Expected us to stay committed to the right things, in school and outside of school.
I did not want to disappoint her.
Mrs. Bryan never had discipline problems; no one dared risk the disdain of Mrs. Bryan. “The glare” was enough to quieten a bar room. She never raised her voice, another memory. Twenty-eight rowdy, precocious twelve-year-olds in her class, and she never ranged above her regular voice.
She didn’t need to.
Good Todays
Some days are better than others.
No two days are the same in terms of how we feel—with what aches and hurts.
My lifelong sense of “wanting to get at it,” which, as a masterful teacher Mrs. Bryan was able to hone in on, has been distorted by Parkinson’s. Now, on the not-so-good days, I need to “want to get up.” It would be convenient to just stay in bed. I never did that as a kid, and I never felt that way as an adult unless I was ill.
But I am ill now. I’ve had this “animal” in me for 16 years. I can’t expect to wake up full of bully and bluster and no one can give me that again.
I suppose that I have not really accepted the chronicity of it, the degenerative continuing of it, that step that Kubler Ross talked about in the acceptance of dying. Health is a thing of the past and I need to accommodate the chronic and progressive nature of this illness. Not to knuckle under or to accept the symptoms, not to give up, but to understand all it means. I can resist as if I were taking chemo and radiation for cancer, but nothing is going to be like a tonsillectomy and penicillin for ear infections.
Parkinson’s magnifies the bad day-to-good day ratio, the percentage of time we regard as not-so-good days. As Allan Cole reminds us, today is the only day we have.
And that’s okay.
Good Patients (and Former Patience)
I was recently contacted by a former patient from San Angelo. I’ll call her Sally. She was born with cerebral palsy and was in arm crutches from the time I met her at church when she was about five. She developed Systemic Lupus Erythematosus (lupus) in her late twenties with inflammatory arthritis, and skin and systemic manifestations such as sluggishness and fatigue. Another uncommon of life’s many disease burdens for her to bear.
She lives independently in South Texas now, away from security. She wants a cure for Parkinson’s Disease and is supporting the MJF Foundation. She wrote to me to tell me to hang tough and to view each day as a new day and to do the most to make it conquerable. She didn’t use exactly those words, but that was the message. In fact, I’m not sure all she told me was any of my business, but I heard the everyday wake-up message that I needed to hear.
We all have good days and those that are not-so-good, at least with regard to living with illness, and some carry more disease burden than others. Sally started living with the burdens of illness at birth. I started at age 57, and my doctor friend’s PD started after he turned 80.
Sally helped me feel….fortunate with what I have.
It’s also the case that I am not going to wake up feeling great again.
I have to accept this and, first thing every morning, I have to get over that feeling that can keep me in bed.
Again.
Some days, Sally’s story and others like it, which I was invited into as a physician, are the motivation.
Good Reminders
If she can do it, I can do it.
Sort of.
I can at least try. Or want to try.
Another incentive for living with the Parkinson’s animal–for living with chronicity–is sort of like what Mrs. Bryan taught us.
Get at it! Go with what you have. Stay the course.
And, never underestimate the value of learning to diagram a complex sentence on paper.
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Photo by Dawid Zawiła on Unsplash
Dan Stultz, M.D., is a retired physician who was diagnosed with Parkinson’s disease 16 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007 to 2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.