The Little Things
November 18, 2016
It is the little things that really matter. Not that the big things are not important, they are. Maybe it is the things that we lose that really become important. I have lots of big things to be grateful for. I am running, biking, doing some weight training at the Y, playing racquetball and even some yoga. I am even in the middle of a major home renovation. I got a lot of the big stuff. I am pretty functional. It is the little things that I find myself wishing for. The ability to write a simple sentence or my name. (granted my signature has been unreadable for decades.) But when I sign something now and it looks like it should, I now give myself a mental high five. The little thing of being able to shave with one hand, or shine a pair of shoes without making an afternoon project of it. Sometimes it is the ability to form words and speak without a little slur or swallow without effort. You know the little things. In life I think it is the little things that also mean the most. It is not the grandiose gesture but the small tender act of kindness that become great in its simplicity. Perhaps a small blessing of PD is a greater appreciation of the little things, both the ones I still have and the ones I’ve losing.
What is it like to have Parkinson’s?
No one asks but I think that the question is there. You look fine and sound fine so what is it like from your side? The description most often used is that it is like doing everything under water. It is slow and awkward. Small movements sometimes are almost impossible. Hand writing can be like being in first grade with a giant pencil and neither you nor the pencil can make the lines go where you want. I tell myself that just because I am going slow doesn’t mean I am not going somewhere, but that doesn’t make going slow any better.
Well at least it doesn’t hurt! Truth is it does. I am stiff most of the time, it hurts to get out of a chair, out of a car or out of bed. It hurts because the medications can make me nauseas, and I am forever tired and I seldom sleep great. It hurts when those close to you are watching you to make sure you are ok. It is embarrassing when words don’t form right and it is hard when swallowing is so hard that the joy of food is diminished. It hurts to know that those closest to you now have the label of “care giver”.
All that said, my faith teaches me that one of the gifts of mortality is to gain experience and that there must be opposition in all things. You cannot experience joy without understanding pain, good without bad. PD has made the sweetness of my life all the sweeter. The love of those around, me supporting me, all the more healing. Life can be hard but that doesn’t mean it is not good. Sometimes my whistle has a vibrato that just won’t go away.
“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he’s been robbed. The fact is that most putts don’t drop. Most beef is tough. Most children grow up to be just ordinary people. Most successful marriages require a high degree of mutual toleration. Most jobs are more often dull than otherwise. . . .
Life is like an old-time rail journey—delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride.”
– Jenkin Lloyd Jones
I thank the Lord everyday for the ride of a lifetime and the marvelous adventure it is.
Exercise – Push yourself
My neurologist commented that I should push myself and that exercise is the most important treatment to stave off PD. With that tasty bit of information I have been trying to do that, push myself. I had been biking 10 miles at a time. Is that pushing myself, I thought. Well I like to bike and I do sweat but I could ride farther, so I biked 15 miles. Then I started to think, where does it stop, 20 miles, 30 miles. I don’t have time to ride for 4 hours every day. It could make a person go crazy. I found this shirt design at shirtwoot.com that seemed to fit my situation.
I sometimes feel like I am being pursued by a monster and I have to stay ahead of it. Some days I am out in front maintaining my distance and other days I can feel the monster’s breath on the back of my tired stiff neck. I guess one of the small blessings of PD is the incentive factor to exercise and find the time to do it and enjoy the process. I will take all the small victories and positives I can get.
This section of my website is a very personal one. About 2 years ago I was diagnosed with Parkinson’s disease. It started out with a problem with my hand writing. I would start writing and then the letters would quickly begin to degrade getting smaller and smaller and finally just becoming an awkward scribble. Initially I thought it was something like carpel tunnel, an easy fix. But it wasn’t carpel tunnel. When the final diagnosis came down it seemed surreal. I thought wow, I did not see that coming. Now what do I do? What will the outcome be? Can I still draw? Will I still be able to make prints?
I have felt a need to write about my experience with this disease, why I am not sure. But even being somehow compelled to write about my Parkinson’s it is still hard. Writing it down and making it public somehow makes it more real, more acute.
It is strange that before you have something you feel like it is rather exclusive, like buying a red car. After you have the red car, it seems like there are many more than you ever expected. Now that I have Parkinson’s, the disease pops up seemingly all the time. Apparently there are a lot of us out there. Unfortunately that is not a good thing. Give me the red car instead.
This area of my website will give me the space to wax philosophical on Parkinson’s as well as other topics that may relate to my life, my art, my family, my spirituality and other matters of importance.