It’s been a month since I “retired” (it still feels strange to apply the term to myself), and I’m having some difficulty wrapping my head around the concept that this is real and permanent, barring an act of God or a miraculous cure. Although there’s plenty to do (and I do it slowly enough that it takes quite a while), I have not gotten used to the fact that this is not a vacation, and that my e-mail box at work is not filling up. There must be some sort of natural law related to conservation of e-mail, however, because my personal e-mail fills up just as fast as my business e-mail used to. The scientists say that nature abhors a vacuum, and I am certainly seeing evidence of that in these first weeks of retirement.
I’ve discovered that, while I’ve been focusing on work in the last few years, I have seriously neglected the things that I should have been doing around the house. I was surprised and dismayed to find out that my sprinkler system doesn’t work very well, and that my wife has known that for months if not years. So, with my customary lack of regard for limitations, I recently pitched into the project of repairing the sprinkler system. I didn’t think too deeply about the fact that we’re currently enduring a terrible drought in South Texas, with restrictions that keep us from watering the lawn more than once a week. Regardless of how well the sprinkler system works, the yard is going to be dead anyway, but to me that misses the point.
The last couple of weeks have been among the hottest in Texas history, also–a perfect time to spend hours in the sun doing manual labor that I’ve been completely unaccustomed to doing in recent years. The good thing about working on a sprinkler system is that you can pretend to be examining the function of the sprinkler heads and adjusting the spray pattern with a little screwdriver, when you’re actually letting the sprinkler spray you in the face and praying for a cloud to come by so that you don’t die from heat stroke.
Although I try not to dwell on it that much (my last blog tirade notwithstanding), I still occasionally find myself surprised by the way that Parkinson’s disease impacts the things that I used to take for granted. Most people probably know that a sprinkler system is actually underground, and I knew that, too. What I didn’t realize was that “underground” is a REALLY long way away for someone with PD. It takes quite a while to get there, and it takes even longer to get back after you’ve spent some time there. Digging up sprinkler heads and valves is bad enough when the Texas sun is about 30 feet away and the temperature in the shade is like a summer day on Venus. To add insult to injury, however, you actually have to sit on the ground to do any useful work on a sprinkler system, and I hadn’t done much of this kind of work in the last few years. Gravity is helpful on the way down, as long as you don’t make the trip so quickly that the impact causes discomfort. However, climbing back up out of the gravity well is an entirely different experience than I remember from just a few years ago. I now have a good understanding of how a box turtle must feel, laying on his back waving his claws in the air and slowly roasting on a Texas highway.
There’s a way to solve any problem, though, even mobility problems caused by Parkinson’s disease. I started carrying a small chair with me so the up and down motion was not quite as imposing, and to combat the heat, I soaked my Harley-Davidson do-rag in water from the hose, draped it over my nearly bald head, and covered it all with a baseball cap to protect my freshly healed DBS scars. I thought maybe I was even a little bit cool because I was wearing Harley logoware until I saw my neighbor laughing and shaking his head. Maybe it’s just that I was wearing the wrong color do-rag – I had no idea the neighborhood was Crip rather than Blood.
Everything takes longer with PD, so I had plenty of time to think as I spent 30 minutes screwing six screws into a sprinkler system valve cover (and that was with an electric screwdriver). Why is it important to me to do these things? This summer, I’ve risked heatstroke, rattlesnakes and Gila monsters, fatal sunburn, and the displeasure of my wife for falling through the bedroom ceiling while working in the attic pulling ethernet cable. Why?
The question was made doubly important by my recent retirement. Under different circumstances, I might’ve had another 15 to 20 years of useful work life left in me, doing work that, while not earthshaking, would’ve been important and valuable, and would have continued to give me a sense of fulfillment, mission, and purpose. That’s a partial answer to my question–the reason that I do these things is to continue to have a sense of value and purpose, even if my capacity is not what it used to be. Although my wife may tell a different story, I have always prided myself on my ability to make things work, to fix broken machinery, and to solve problems. Occasionally those problems were of my own making, but there is value in digging yourself out of a hole that you dug yourself into in the first place. Even if it takes 10 times longer than it used to, fixing the sprinkler system reminds me that I still have the ability to solve problems and to accomplish difficult tasks, even if in relative terms those tasks are different than they used to be.
Another equally important answer to the question, “why do I do these things?” is that it’s a way to fight back. Life with PD is a daily battle: against exhaustion, drug side effects, nausea, stiffness, slowness, tremor, pain (don’t believe the conventional wisdom–PD hurts) and all of the other characteristics of this gift that keeps on taking. I tend to think in military metaphors, and I once described Parkinson’s disease as a long battle against overwhelming odds from a succession of fallback positions. There are many ways to feel like a loser in this situation, but there are just as many ways to feel like a winner. For me, one of those ways is by just not giving in. I’m not successful at that every day, but every day is another opportunity. I fix the sprinkler system, and pull ethernet cable, and write software for our home automation system, and yes, I even fly those helicopters as a way to say to this disease, “Today, I win. Tomorrow may be different, but just for today, the battle goes to me.” That’s worth aching muscles, sunburn, blisters, losing 10 screws for every one I get into the right place, and even the occasional need to patch a hole in the ceiling. I’m not completely convinced it’s worth my wife’s displeasure, but we’re working on it.
© 2011, Corey D. King
4 thoughts on ““Do Not Go Gentle…””
I agree. Don’t go gentle into the night. Fight, fight, fight to have the best life possible. Be relieved your work email is not piling up. The coworkers are your friends, they want you to be stress free. I applaud your courage and determination.
Corey, thank you for saying it the way it is. I plagerize some of the ways you discribe our disease by sending bits & pieces to my family so they can understand some of what we go through in a way I can not say it to them. I appreciate you as they do. Love you my friend. Sheila
I applaud your unyielding courage, and I understand your need to feel victory over another day. For all of us, there will be days when we “don’t make that cut” and might feel that the day beat us out of usefulness and self-worth. However, one thing I do know, is that our value is not something that we accomplish…but who we are on the inside. You are a winner in every way…and every day!
I just became aware of the recent changes in your life (after a conversation with John D.). You and I haven’t been in contact for many years, but after reading through The Crooked Path posts, I can see that you’re approaching PD with the same “kick ass and take names” attitude that I remember from the past…nothing but 110% from Corey! Your drive and determination are an inspiration and I’m a little embarrassed to admit that reading your posts and seeing your pics/videos makes me feel guilty about kibbling over the small annoyances in my life. I’m also a little embarrassed to admit that every RC helo that my wife and daughters have bought for me (and there have been many) seems to end up in some far-away land (strong winds, too much altitude, etc.). I do have about a dozen remotes…just no helicopters.
Keep up your resolve and keep the pedal to the metal as you charge this train down the track. Thanks for the blogs, the updates, and just for making us all aware of everything involved with PD. Looking forward to your next post!