When you have Parkinson’s, sometimes if you’ve got to go, you’ve got to go!
The Gringotts Getaway
A few weeks earlier I found myself ‘running’ away from a celebration organised by one of my best friends. I’d been struggling for a while to get my meds working consistently. Just when I really needed them during the event, they had already worn off. I was starting to feel really stiff and uncomfortable, my confidence levels plummeted and I became very self-conscious.
I shuffled unsteadily to the restroom. I wanted to gather my thoughts away from the crowds, and found myself pondering an age old dilemma: to sit or to stand? Sitting means I have to fiddle with multiple fastenings and deal with the frustration of re-tucking my shirt neatly back into my trousers. Standing, on the other hand involves higher risks, but can deliver higher rewards: less fastening, less fiddling and less frustration, as long as my wind speed calculations were correct. Unusually I decide to gamble. Happily, impressed with my sniper’s accuracy, and as I am a responsible gambler, I decide to quit while I am ahead. Exiting the bathroom I locate my wife, who was waiting patiently for me having ridden ‘shotgun’ to the loo. I ask if she will quietly return to our seats, grab our things, and join me in a silent exit.
Unfortunately, our hosts had come over to be social just as she arrived back at our table. Cracking instantly under the pressure of their expert interrogation as soon as they asked “where’s Mark?”, Cathy was compelled to confess that I was in the middle of an escape attempt. This resulted in the entire table of guests trooping out to the foyer, where they discovered me recreating a scene from the Great Escape. Trying to look nonchalant, I was hunched over my trekking poles quietly depositing the sand from the tunnel I’d dug with a spoon from the dessert trolley. At last I’d found a use for my parky shuffle as I blended in the excavated material discretely released from the bottom of my trouser leg. If only ‘Schuey McFee’ had had Parkinson’s, he would never have been mowed down by the Gestapo in a final act of desperation, trying to escape over the barbed wire fence in broad daylight—he would have found himself frozen on reaching the first warning wire, unable to step over it!
At this point I was so preoccupied computing my escape path across the polished marble foyer floor toward the sliding doors and freedom, that it was too late, I’d been surrounded. My table-mates were busy arranging themselves “naturally” around me for a photograph before I could make my silent exit. Switching film genres completely, it reminded me of a family trip to Harry Potter World where we’d gathered around the waxwork banker in Gringotts for a holiday snap—only this time, I was the miserable and unfriendly character in the centre.
When our photographer suggested we all cross to the other side of the room for a better light, my friends, noticing the black clouds gathering above my head, shouted ‘NO!’ in unison. We took the picture, I clattered across the marble floor like a giant spider on roller skates, the doors automatically opening to receive me—dropping the mic as I exited the building.
Once in the car, the adrenaline faded and the guilt set in. Victor Meldrew or Harry Enfield’s “Old Gits” take your pick, I must seem like all of these characters rolled into one. I’d treated my friends rudely by rushing off without so much as a ‘see you later.’ Disappointed in myself, I realised I needed to understand why I felt so desperate to leave. Perhaps I could then deal with similar situations in future, if I ever get an invite that is.
Self Analysis: Fuss and Wet Noses
I am coming to terms with and I accept my diagnosis, but getting used to my “New Normal,” will always be an ongoing process. When I was younger I was very self conscious and lacked confidence in large social gatherings, but eventually I grew out of it. One of the benefits of having Parkinson’s though is time travel. It now transports me back to those days and uncertain feelings, with a whole new set of inputs to contend with. So, maybe I shouldn’t be too hard on myself when I find I’m once again struggling with my self-confidence, especially when I’m around friends that have known me for many years before Parkinson’s. I worry they will subconsciously be comparing my ‘old normal’ with this new version. For people with Parkinson’s, it’s the gift that keeps on giving. Just as we get used to one version of ourselves, old Parky extends an existing symptom or adds another to our portfolio. Surprised with a resulting “New, New Normal” every time we put ourselves out there, each social event means dealing with another cause for anxiety.
If I do manage to hurdle the anxiety of appearing “Parky” in public, the urge to flee can hit the moment the meds wear off. While my brain has enough dopamine, I’m fine—I look good (nothing new there). But as the level of this reservoir drops, the Great Escape committee starts gathering in ‘Hut 41’ which is located just behind the memory of my grand mother’s wedding cake which she served up one Saturday tea-time when I was 11 (having re-discovered it 40 years later at the bottom of her wardrobe). At this point, I feel old Parky’s shadow creeping over on me. It starts with sciatica—a toothache that connects my left hip to my ankle as muscles tighten. My feet get heavier, my legs disconnect from my brain, and the anxiety spikes: Will my legs lift me out of this seat, or am I heading for a face-plant in the chocolate fountain?
My onboard navigation system starts computing vectors: the number of tables between me and the exit, the entropy of the crowd, and the open spaces where I’ll be on display for all to see. I am in game of Frogger, trying to hop from one safe spot to the next before the “fuss” starts– the goodbyes, the photos, the “we must do this agains”… all the while I am standing there feeling painfully stiff, hunched over, and desperate for the anonymity of the car and a seat.
Underneath my rigid Gringott’s manager like exterior, there is a lot going on. My friends and loved ones say they “still see me as me,” but the issue is that I don’t see me as me when I feel like this. I could just grin and bear it. Or, I can hope that my friends understand that I don’t want to be rude—I’m just in a desperate need to retreat to my kitchen floor, lie face down, and let the dog stand on my back. Rocky does a mean version of a Thai massage and he gets how I’m feeling. When I look into his eyes, I know he understands the pain and with one wet nose in my ear, he makes everything better.
If You Love Someone Let Them Flee
So, I may have exaggerated my narrative somewhat for the purpose of your entertainment, but the next time you see me shuffling for the door without a word, please don’t be offended. And if you aren’t able to put a wet nose in my ear, just be a good friend and forgive the rudeness. One day soon, I’ll get over myself and join you for the fuss.
Balls to Parkinson’s 