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.
3 thoughts on “Good, Better, Best”
Glad you could get out on that new area of the Riverwalk! It’s all so great, and we had some beautiful days in April.
As always excellent as a fellow PD sufferer it helps to see what others are going thorough keep up the great work
Cory, You are an amazing man! Thank you for sharing your journey. I know many people are encouraged.