I was diagnosed with early-onset Parkinson’s disease in 2009. Since then, I have struggled to come to grips with the reality of this progressive, degenerative, incurable disease – the knowledge that, on average, I will never again feel as good as I do right now.
There are variations, of course – some days are good, and some are not. Some days are actually good enough that I feel a little guilty. I retired from professional life in 2011, two years after my diagnosis and just a few months after my deep brain stimulation (DBS) system was installed. On my good days, I occasionally feel as if I’ve been playing hooky from school for the last six years.
I have a recurring nightmare, one that I understand is very common. I find myself in a huge classroom. I realize that I am late for a final examination, mostly because I couldn’t remember where to find the classroom. I recognize the classroom and the people in it, but I haven’t been there for a long time. With a sinking feeling, I realize that I haven’t studied for the most important test of my life. If I fail, I will never get another chance.
I am late enough that many of my fellow test takers are finished and some are gathering up their things and leaving. I find my seat, open my test booklet, and read the first question. It’s in French. I don’t speak French. Desperate, I flip through the booklet, trying to find a question I can answer. I finally find a math problem – with relief, I begin to work the problem. My pencil breaks in half. The alarm bell rings. The whole class begins to laugh and jeer. I discover I am naked. My teeth fall out, and the professor (who for some reason, is Las Vegas about-to-die-on-the-toilet Elvis, replete with rhinestones and high-collared jumpsuit stretched tight over a bulging belly), screams, “FAIL! Thank you very much,” and begins working his way through a soulful rendition of “Love Me Tender.” Pudgy Elvis, singing all the while, clips a huge rubber band to a hook on the harness I am suddenly wearing, and pulls a large wooden lever set into the floor. The rubber band slings me through the skylights in the ceiling (did I forget to mention the skylights?) and screaming, mostly naked, holding the stub end of a broken pencil, toothless, and panicked, I rocket up into a gray, stormy sky. After an eternity in ballistic flight, I crash down in an asphalt parking lot littered with broken glass, and roll into the door of a building. I look around – I find myself in a huge classroom.
And so on.
Perhaps the dream is not as common as I’ve heard – I think it’s much more normal for Elvis to be singing “Blue Suede Shoes.” What can I say – I’m a rebel.
At any rate, I spend most of my conscious effort trying to have a “good day.” Why, then, do I feel guilty when I do? All of us with chronic diseases that are sometimes not apparent have our own way of managing usually well-intended comments about our state of health.
“You look great! It’s almost as if you were normal!”
“You seem to be feeling much better – I’m glad you’re recovering.”
“Yes, I’m having a good day today.”
“Every time I see you, you look stronger. Are the doctors sure you have PD?”
“No, it’s all a giant hoax, designed to bilk society of valuable resources. You and a small number of other mouth-breathers are the only ones not in on the joke. I’m sorry, did I say that out loud?”
I don’t want to have this damned disease, and I also don’t want to whine about the fact that I have this damned disease. So, what do I do? I keep marching forward, and I work to be grateful for the good days. There are fewer than there used to be, but every one is a blessing.
I had a good day today. For the first time in about 25 years, I rode a bicycle. Amy and I rented bikes on the Mission Reach in San Antonio, and we rode from Mission Espada to Acequia Park and back. It took a while, my balance was terrible, and I had to stop several times, but the sun was out, it was cool and breezy, and I had the most knowledgeable (and beautiful) tour guide anyone could hope for. I’ll hurt tomorrow, but what a great day it was today.
Last week, I spoke at a support group and a meeting of federal government retirees about PD. My life-long friend Bob visited, and so did my daughter and son-in-law. I went to museums and 300-year old churches. I spent Easter with my family, and celebrated a birthday (not mine – we don’t do that anymore). I ate well, but didn’t overeat. I ate some things not strictly good for me, too, but am no worse for it. Tomorrow, I am going to Denver to participate in a project with the Davis Phinney Foundation.
I had bad days too – I don’t remember much about them. I think it’s supposed to be that way. I occasionally feel guilty that I’m “retired,” especially on the good days. I’ll work through it. As I told the groups I spoke to last week, I didn’t choose this life. But, every day I have a thousand choices I can make.
I won’t pass on the opportunity to choose.