One of the most frustrating things I have run into on my journey as a Parkie is people’s ignorance. We have all been guilty of speaking before we think. In fact, before I had Colon Cancer and Parkinson’s disease, I was not extremely aware of the impact my words might have on others, and often spurted out bold comments that were just floating around in my head. But I just experienced the deadly foot-tis-in-mouth disease on an epic scale… and bonus… it didn’t come from me!
A couple of days ago, I had to fast for 10 hours to get 14 tubes of blood drawn to check on my auto immune issues. Just as expected, the fasting and inability to take my medication as regularly scheduled, my symptoms were off the charts annoying. Luckily, I had planned to take the day off knowing that this could be a challenging morning. After completing my tests, I felt that I had rightfully earned myself a super yummy chocolate donut and a trip to the mall to engage in some retail therapy.
I knew that my symptoms were unmanageable and my dyskinesia was making me dance around like I had ants in my pants, but if I spent every arduous day avoiding being out in public, I would turn into a toad. So with specks of chocolate donut coating the corners of my mouth and my dancing shoes strapped on (one must always have a good pair of shoes when your symptoms are acting out… we have enough to worry about, don’t need to throw uncomfortable shoes in the mix) I proceed to the mall.
Now, I’m not an idiot. I know when my symptoms are bad, but I don’t focus my energy on making others feel comfortable with something that I can’t change. I won’t give up my precious time on earth trying to hide something that I have very little control of. Plus, retail therapy is work… I have to stay focused on the various “sale” or “buy one, get one free” signs and this all takes extreme concentration.
I have located an exciting 50% off cute sports bra sale at Victoria’s Secret… which by the way, cool kids call “Vicki’s”. So I am standing in line at Vicki’s, as you can see in my very detailed diagram… I felt a visual depiction of that day was necessary… don’t be jealous of my artistic skills, some people are just born this way.
I make my way up to the cash register and hand my loot to the model… I mean, sales person. At this point, I am clueless that I’m dyskinetic. Like I mentioned before, I don’t waste my time on making people feel at ease with the array of Parkinson’s symptoms I display. Well I guess I was really getting into my performance of the dyskinesia dance, because when I turned around to leave with my merchandise, the woman standing in line behind me says, “You move around a lot.” I was thrown off a bit. It took me awhile to respond with, “Yes, I do.” Thinking that should be the end of the conversation, but I was not so lucky. The woman (who I so kindly portrayed as Jabba the Hutt waiting in line to buy Spanx) continues with, “Do you move around all the time?” With leaving me no time to respond, she follows up with, “What’s wrong with you? Do you have ADD?”
Now I usually don’t get to experience this level of verbal diarrhea, so I was slightly stunned. And while I would have liked to make it a teachable moment for Jabba, I was very much aware of all the people surrounding me that could hear the conversation. I replied, “ I have Parkinson’s disease.” With shock on her face as, she almost dropped the Spanx in her hand. She exclaims, “I am so sorry!” I… not missing a beat, respond, “Don’t be. I’m not.” Then I drop the mic and walk away.
Now you can imagine I have been thinking about this conversation a lot and of course now think of all the things I should have said. I would like to share those thoughts with you now. Here are the ways I could have responded to Jabba’s comments:
- You didn’t hear about the big sale? They give you and extra 70% off your purchase today if you dance around at the cash register and say “I want in on that sexy sale”.
- I guess the crack is wearing off.
- I really have to pee… If I stop moving I will piss my pants.
- I have scabies…. *make sure to scratch your arms.
- I am trying to hit my daily 10,000 steps on my apple watch.
- Smile. You’re on “I’m an ass and will say whatever comes to mind” hidden camera show.
- I am practicing my Riverdance routine…
- I have a neurological disease that will end up disabling me, but there is a pretty good sale on sports bras today.