Being cold and having Parkinson’s is not a harmonious relationship. A couple of degrees below comfortably warm and my body reacts as though I was in the Antarctic. It displays a shivering that is completely out of my control. It is not particularly uncomfortable but it is obvious to me and to others.
The fire station where I was queuing recently, to receive my Covid booster vaccine, was chilly and my shaking, disproportionate and uncontrollable. Coupled with an inexpressive face, I can only assume I was giving off an air of apprehension or quite possibly, terror. A kindly helper came towards me in the queue. I tried to smile to indicate all was well and she had no need to worry but my slightly wonky brain didn’t relay that information to my facial muscles in time for them to respond before she approached me.
All credit to her, for noticing something was not quite right. I assumed she was going to ask if I was alright. She didn’t. Instead she said in a very loud, slow voice, ‘don’t look so worried, it will all be over in a few minutes’, as she patted my arm and gave me a sympathetic smile. I wasn’t worried. I have given thousands of injections in my time as a nurse, received quite a few and not once has this ever caused me any concern. I was completely relaxed about the prospect of the jab. I was just a bit cold.
It was very obvious from her gesture that she had assumed I was scared. The volume of her voice meant that many others in the queue were now thinking the same thing. What I read from her excessively loud voice and deliberately slow speech was that she had also assumed I was of below normal intellect. I’d like to think not everyone in the queue had jumped to the same conclusion but I rather suspect, some already had.
My face, still refusing to smile, gave no indication that I was quite alright. I was just about to explain, when, taking me by my arm, she led me to a seat and indicated I should sit down. The seat was next to the open door where the even colder air exacerbated my symptoms further. I shook even more and as I did so, her voice became louder and slower. I can only assume that she thought if she explained the process to me, I might relax and stop shaking. She didn’t ask and I hadn’t the heart to tell her that I understood the vaccine process entirely and if she would just hurry up and let me have my jab, I could move away from the door and only then might I actually stop shaking. The more I shook, the louder and slower her voice became. I dutifully listened, aware that I was by now, attracting quite a few sympathetic glances. The helper assisted me in rolling up my sleeve in preparation. I was perfectly capable of doing this but again, can only assume my body language suggested otherwise.
I received my vaccine, uneventfully and sat dutifully for the requested 15 minutes, still shaking. During which time, the helper repeatedly gave me the ‘thumbs up’ signal to check if I was alright. My attempts to respond with a smile and a reciprocal ‘thumbs up’ were not easy to interpret and so before I knew it, my helper was again by my side shouting slowly at me again.
Frustrated and embarrassed but also somewhat amused by the experience, I reflected a little. It seems that my body can no longer be relied upon to accurately convey how I am physically, emotionally or cognitively. The symptoms I display can easily be misinterpreted and I’m beginning to realise that there are times when I need to take back some control and find a way to explain, that helps other people make sense of what they see.
I find that ‘I have Parkinson’s’ is often not a sufficient, stand alone explanation. It assumes that I’m comfortable with sharing this information with strangers, and also, that the recipient of such information has some understanding of what it means. Neither of these assumptions can be taken for granted but that’s for another blog. A simple “I shake a lot when I’m cold but I’m fine thank you’ would probably have sufficed on this occasion but I’m on a learning curve and other suggestions are welcome!