The Unexpected Lesson Parkinson's Disease Is Teaching Me
I have four kids, I worked in the tourism industry, and I spent three years as a para-professional supporting children with disabilities at an elementary school. I’ve never struggled to exhibit and extend patience to others. To others.
What is Parkinson’s Disease?
When the kids were little, patience was a necessity for us to successfully stumble our way through the days. Spilling juice on the floor while they poured themselves a cup at snack time? Well, first off, I could have poured it for them and the spill could have been avoided. And then, when the inevitable spill did happen, I could have gotten cross with them and shooed them out of the kitchen while I angrily cleaned it up myself. It would have been so much easier, and so much more efficient, but what would I have modeled for them? Instead, I chose to let them learn to pour the juice themselves and I taught them how to “just shake it off” and simply clean up a mess if one did happen. Patience.
During the years I had the privilege of serving as the Tour Director at Castle Farms, I know I shared the same stories and anecdotes hundreds of times over. I explained and re-explained the charter-tour catering menu several times every day. I walked miles within the same halls and gardens each week of each season with our guests. I definitely answered the same questions thousands of times. But I only needed to pause for the briefest of moments to be reminded that many of these guests were seeing this majestic place and hearing the fascinating stories for the first time. At those moments, I was magically transported back to my first visit. Patience.
For three years, from September through May, I got to spend my days tutoring and guiding amazing kiddos in their quests to master cutting and pasting, telling time and calculating change, fluid reading and engaging writing. Just as pouring the juice for my kids would have been easier and more efficient, pasting the shapes, counting the coins, and thumbing through the thesaurus for my students would have been the quicker, easier way out. But, again, what would that have modeled for them? Instead, success was achieved together, with glue-covered fingers, miscalculated elapsed time, and eraser-marked rough drafts. Patience.
Why not me…
While I seem to have wagonloads of patience for others, I often lack the ability to extend the same courtesy to myself. Enter Parkinson’s. Parkinson’s disease has introduced me to all kinds of lessons. Some of these lessons I am really ticked off about, but some of these lessons — the unexpected ones — I am learning to embrace. And, who knows? Maybe I’ll even do the homework.
Everything takes longer and is harder for me to do these days. Well, everything except scrambling eggs or putting sprinkles on the Christmas cookies. I can do these things better than anyone in my house. Because, you know, tremors. But the other things — the everyday things — those are often challenging on even my best days. These days, I’m the one spilling the juice when I pour myself a glass. Random facts and silly stories I’ve regaled people with for years randomly slip from my thoughts. Hallways and pathways I’ve walked on a regular basis are now scouted for tripping hazards or easier routes. And counting change? Forget about it. These days I just drop all the coins trying to get them into or out of my wallet.
I pick and choose my lunch options based on how steady my hands are that day. Soup and anything that requires chopping are saved for less shaky days. I’ve had to resort to mostly printing when writing by hand because my fingers and hand cannot consistently move smoothly enough for cursive.
I’ve relented to one of those ginormous pill organizer thingies, because opening 10 separate medication bottles first thing in the morning after spending all night off of my Parkinson’s meds, yeah… I may or may not have lost a pill or 73 to the bathroom floor and the sink drain.
On the days when I do feel strong enough to run errands, I need to anticipate twice the amount of time it “should” take. And for the impending icy parking lots of Northern Michigan winters, I will need to utilize the disability placard my neurologist recommended.
Until my Parkinson’s diagnosis, I would have had zero patience with myself for the kinds of obstacles I just shared with you. I would have had all the compassion, patience and understanding in the world for someone else struggling. Someone else — but not me. But these days, Parkinson’s disease is teaching me to practice patience. Patience with myself. But, dang, why is this lesson taking so long?
I will get there. I am getting there. I am slowly learning. Learning for me. Learning to show a little grace. To demand a little compassion. To practice a little patience.
Getty image by Fona2.