When people first meet me, they usually say something to the extent of, ‘”You have Parkinson’s? …But you look so normal.” This comment always makes me giggle inside a bit, because if they only knew… Muahahaha! What is “normal” anyways and who decides what qualifies as “normal”? I have always tried to blend into my environment. Laugh when it’s appropriate, smile when it’s not creepy and make eye contact while occasionally blinking. But I am pretty sure that not many people know just how much energy I am putting into appearing to be normal.
From the moment I wake up, I begin the process of normalification… And yes, I did just make that word up…. just roll with it. I begin by getting my medication in my body. So I line up my variation of medication that I will take in the morning, pour a bowl of cereal and get to poppin’ pills. Now for all those people who say, “I just get out of bed, grab a cup of coffee and go to work… You’re normal! But for me, I have to sit there and wait for my medications to kick in.
Then the grooming process begins… I know, as difficult as it may seem, I don’t wake up looking this stunning. I have to remember to take one task at a time or I will get lost in an activity. What this means is if I don’t focus on one thing such as taking a shower, I will get distract by something irrelevant… like noticing a sweater on a chair and then proceeding to do a load of laundry when all I really needed to do is to just get in the tub.
I finally get out of the door, showered and medicated. But now I am dyskinetic… this is when the fun really begins. When I arrive at work, I can feel myself dancing around like I’m doing the pee-pee dance. I try to focus on slowing down my movements while I talk to a co-worker, “They are seeing my dyskinesia, hold still for 10, 9, 8, … see I look normal… 7, 6, 5, … oh shoot they just looked down… 4, 3, 2, … cross your arms… 1… wait what did she just ask me?”
Then I see my first patient of the day (still dyskinetic) I bop around in my chair. A patient makes a comment about me appearing to be distracted and that they’re feeling rushed. I have to take time to explain that I am listening and I am present, it’s just my Parkinson’s is acting up. I sit on my hands in a poor attempt to slow the involuntary movements.
I go to lunch with a co-worker. As I walk up to the restaurant, a little voice in my head says, “Swing your arm, don’t clomp your foot down, smile… too much, don’t hunch forward and think about what you’re going to say as you approach.” Are you exhausted yet? I am just by writing this post.
Our food arrives at our table. I am now slow and rigid. I reach into my bag and pull out my pill case, which I must have with me at all times. I pick out my cocktail of lunchtime medications and start popping pills, again not normal. I have a difficult time cutting my food and my rigidity is causing a headache. I reach for the breadbasket and toss a piece in my mouth, which of course goes down the wrong pipe. Now I am turning bright red trying not to have a coughing attack… I fail… time to try to cough up the food I couldn’t swallow. I feel a wave of nausea rush over me. This means my medications are kicking. I feel like I am going to yak, I kindly excuse myself to powder my nose. Hit the bathroom door and begin to vomit. After washing my hands and rinsing my mouth, I return to my co-worker and smile as if nothing has happened.
I’m now dyskinetic again. I am speaking fast and sweating like I am high on crack. But I must attempt to look normal… once again, failing miserably. I am meeting a friend for dinner and order a filet. Staring at my plate focusing on swallow my food properly, I look like I am concentrating on solving world hunger. Now the protein I just ate in my delicious steak has wiped out my medications. I am slow and rigid again. I look uncomfortable, but making a valid attempt of getting my words out of my mouth in a coherent manner. I force myself to smile and raise my eyebrows, but all I get is this wide-eyed frozen look…. and I don’t mean like a Disney princess with an adorable snowman friend named Olaf.
I say good night to my friend and go home. Crash is waiting for me at the window when I arrive. Now I don’t have to put any energy into trying to look normal. He accepts me as I am and it doesn’t matter if I move slow, make weird faces, or have trouble getting my words out. I put on a pair of flannel pants and a t-shirt. No effort is needed to sit on the couch and binge watch Netflix with Crash. Tired from my day of expending so much energy just to blend in. I move to my bed, fall asleep and wake up the next morning just to start it all over again. But I look so normal?