The Incurable Gift
How a deadly disease taught me to think and feel
I have been wondering lately whether I’m glad I have Parkinson’s disease. I realize many people who have the disease or watched a loved one wither and die from it will figure I’m crazy or I must have some lesser form of the disease, some sort of Parkinson’s lite.
While my version has progressed somewhat slowly, I’ve had it for 15 years and I can assure you there are only two versions of Parkinson’s: “horrible” and “I-wish-I-were-dead.”
It started with shaking, fatigue, poor balance, and later added curled toes and trouble walking. The feeling inside my arms — sort of as if the bones dissolved — is sometimes so intense and strange it seems to move beyond pain into some new realm of torture. I was slowly transformed from a senior editor who once helped writers find their voice to a person who couldn’t write his name, who now sometimes struggles to swallow and speak.
I fought back by having brain surgery, trying experimental treatment, and taking 12 pills a day. If you’re not terminally or mentally ill, the odds are I have suffered in ways you can’t imagine, so cancel the pity contest because I already won.
I retired on disability when my hands could no longer find the right keys during high pressure and highly competitive editing shifts. I had no choice, as I could no longer put in a full day. During commutes, my arms felt so heavy I had trouble keeping them on the steering wheel. At lunchtime, I didn’t have the energy to leave my desk for a drink of water, much less walk 50 steps to get a sandwich.
When I first got a handicapped parking permit, I feared people would see me hop out of my car and think I was cheating to park in the reserved spot. Now, if a stranger sees me struggle to crawl out of the car, there is only concern in their eyes.
So why am I beginning to think of Parkinson’s — which made me disabled, unemployable, and wracked with almost constant pain — as a gift. What benefit outweighs its horrible symptoms? Simply put: time.
When I was healthy, I earned very good pay as a senior editor at a company that is among the industry leaders in salary and benefits. But my money (at one point, I earned more than my supervisor) probably made me a target.
I used to have a saying: I spent half my time doing my job and half my time keeping my job.
So while in all modesty I was a very good editor and consistently came up with ideas the company pursued, I would have had to up my game even further to keep my job and I was already running at full speed.
The company’s disability plan provides about 60 percent of my salary, and about half is tax-free. After taxes, commuting, and dry cleaning costs, and a sandwich for lunch every day, I probably pocket almost as much doing nothing each day as I did for working. And because of a couple of delayed compensation payouts, one of the highest-earning years of my career was the year after my retirement. I retired at 56 and the benefits will last me about 10 years.
My wife has a good job and I’m on her excellent insurance, so we’ve managed to build a nest egg. I know most Parkinson’s patients aren’t as financially fortunate. But for me, Parkinson’s forced me into premature retirement, which turns out is pretty comfortable.
If I didn’t have Parkinson’s, the best-case scenario is I would have earned more by working very, very hard, until I could retire in about 5 years, or I’d have been let go and had to scramble for a job paying not much more than I earn now doing nothing.
When I worked, my wife and I were so busy on weekdays we often put off chores until the weekend, but that was also the time for fun, romance, and family time. So the weekends were busy too, not much time for friends or to prod our sons into meaningful conversations. So everything was rushed.
Now I have so much time, I often go meet the mailman on the street so they don’t have to climb the steep hill to my mailbox.
All that being said, I loved my job. Each day was a high wire act performed on the computer screens of thousands of clients around the world. It was a thrill, and I did my share of backflips that would have gotten 9.9 even from the Russian judge.
Yes, I fell a lot too and that was horrible, but at least I was up there, taking my shot in the spotlight. As Karl Wallenda said, “life is on the wire, the rest is just waiting.” I had 35 years on the wire and I miss it, but if you haven’t shown what you can do in 35 years, then maybe you have nothing to show.
When I retired on disability, I was often told I needed to find something to do or I’d go crazy. I was told I’m so accustomed to working that I’ll want to take up some new labor every day. Yes, I volunteer some. But I don’t understand what’s wrong with waking each day and doing whatever I want.
Now I can set aside the rat race, tweets, e-mails, and texts. I have time to reflect on the interactions I have with people. I can give better gifts. Last year, for Valentine’s Day, I went to five different restaurants to get my wife’s favorite appetizers, a significant step up from the last box of candy on the shelf at CVS she usually endured.
There are many things Parkinson’s has taken from me, such as bike riding and skiing, which might dislodge the implants in my head. I haven’t run or jogged in years (my balance is not good). But I’m too tired to do those anyway. I concede the benefits of Parkinson’s make a short list. In fact, I’m certain once I trade in my cane for a wheelchair, I’ll scoff at myself for having written this.
Still, as Alfred Lord Tennyson wrote:
“Though much is taken, much abides; and though
We are not now that strength which in old days
Moved Earth and heaven, that which we are, we are.”
I’m four years into paid retirement, and except for the virus, it has been good. I have time to think deeply about relationships and what my life is supposed to be about. And I have time to try to become the writer I always hoped was hiding somewhere inside me. So thank you, Parkinson’s, you bastard.
You have given me what everyone wants, a chance to step away from earning a living and learn just to live. I’d offer a salute but I can’t lift my arms right now.
