“You look great!” “Parkinson’s? You don’t look sick.” “Oh I am sorry. I will pray for you.” “I have heard that the oil of the Mongolian skunk cures Parkinson’s” …and other things well-meaning people say.
If you are living with Parkinson’s, you have heard these statements dozens of times. (Maybe not the Mongolian skunk oil but some type of cure.) These phrases are often the first words from the person who has just heard you have the disease. After a while, it can get old; and you start to think of snappy comebacks:
“Parkinson’s? You don’t look sick.”
“Well I am! I have an early onset idiomatic progressively degenerative neurological disease. It’s the pits and honey, let me tell you about it. I have constipation, frequent urination, stumbling exhalations, lack of relaxation due to shaking hands…” and so on.
Such retorts may get a person to never say that again. Yet with some good reasoning we can represent ourselves better. Lets go on…
Most people see only the surface of Parkinson’s iceberg. The following excerpt from my memoir, “The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease,” demonstrates the difference between how I might narrate my day and what actually happens.
Got up, took 7:00 a.m. meds, ate breakfast, took my kid to school, rode my bike three miles to the gym, worked out thirty minutes, rode bike home, put a load of laundry in the machine, showered, took meds, went for a massage, went to friend’s house, practiced styling my hair left-handed, drove to another friend’s house, practiced church music, drove home, took meds, ate dinner, got guitar and went to assisted living, played guitar in jam for two hours, went home, snacked, took meds, fell asleep on couch.
Here is what happened “behind the scenes.”
When I woke-up I was frozen to my bed. I could not move my body. I called for my husband to come and help me out. I leaned against the wall for support and just barely made it to the toilet without losing the contents of my bladder. After my son got out of the car at school, I sat in the parking lot trying to figure out where I was and how to get home. I couldn’t carry the full baskets of dirty laundry, so I split the dirty laundry into manageable loads. It took me three tries to get my bra on straight. It felt great to ride the bike, there was no pain in my hip or back, but to get on and off my bike I needed to lay it down softly on the road, so as not to scratch it, and step across the frame. My right foot froze, and so I had to lean on a telephone pole to pick it up and move it across the bike to step on the pedal. In the shower I held onto the bar for balance. Reaching the bottom of my feet without letting go was impossible! A sheet shielded my body from view as the massage therapist struggled to roll me over on the table. It was great fun to play the guitar and practice church music. Then, getting ready to go to the music jam, I couldn’t zip up the little side zippers on my boots. I wanted to put on a little eyeliner and mascara. What a joke! The eyeliner went on zigzagged, and the mascara applicator missed my eyelashes altogether.
My arrival at the assisted living center where the old-time fiddlers were performing was announced when I dropped my overstuffed guitar bag. Capo, tuner, picks were under my chair, under other musicians’ chairs, and some picks even escaped into the audience. I was so exhausted, I played only every other song. When my hand trembled badly, it was a good time to just tap along on my guitar like it was a drum. The stiffness from sitting made me feel the forces of gravity a hundredfold as I tried to get out of the chair. It took concerted effort to get everything packed up in my guitar case backpack, get the zippers closed on it, swing it on my back, and stand up straight. I had to move slowly from table to table, grabbing for balance, until I could walk and get out the door. At home I put my guitar bag down by the piano and collapsed on the couch, falling into a deep sleep.
That’s quite a bit of reality hidden in the water under that iceberg.
“You look good.” Instead of lashing back with a smart remark, I could be compassionate and use this situation as an educational experience. We need more comrades, and a well-educated comrade is much better, than one who says “you look good” every time they see you.
“You look good.”
“Thank you. I really have to work hard at being like this. Parkinson’s disease makes me have tremors. My walking freezes up on me. I have to take my medication on time and that I watch what and when I eat. I need to exercise intensely at least five times a week. This Parkinson’s is much harder than it seems”
“I’ll pray for you”? I am sure there have been changes in my quality of life because of prayers. Yet, I wonder if sometimes this is said by a person who does not really know what to say or do. I would love the pray-er to act also. Showing up at my house and making chocolate ships cookies so the place will smell great when the kids get home from school; doing the dishes while keeping up a continuous dialogue about the latest episode of Poldark; painting my toe nails between putting loads of laundry in the wash. I need the visitor’s time to lighten my loneliness and as a bonus maybe help with a few chores. I know it is much more of a commitment than the prayer alone, but truly needed just as much.
Skunk oil, snake oil, coconut oil. Have you received jars of unidentifiable substances smelling worse than rotted sauerkraut, books describing the use of mayonnaise for neuroprotective purposes, or bottles of special waters from a deep artesian well under San Diego meant to eliminate digestive issues? I almost spit my gum out with some of these things that are supposed to “help.” To the well-meaning “cure” giver I must be gracious and say, “I am following the directions of my doctor carefully so I can benefit from the research driven treatment plan she has designed.”
Parkinson’s is a rough road to tread. With careful thought to the words we choose, we can educate the world around us, and make our lives easier too.
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The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease is available from the author at www.ultreablog.org, or through Amazon and Kindle.
Photo by Burst