A voyage of discovery
There! Hopefully the title has grabbed your attention. My story does have a voyage that was excellent but the discovery wasn’t one of the stops on my cruise, instead it was finally meeting another person who has essential tremor.
My cruise was on the stunning Cunard Queen Elizabeth with the highlight being a two day visit to Saint Petersburg, Russia. It was spectacular and filled with amazing sights and experiences. However, as usual, my experience of everything I was taking in was ruled by my tremor. Avoiding certain drinks because they were served in wide rim glasses, choosing certain foods because my tremor is less visible when not eating soups etc and having my partner handle monies and using pen and paper. All of this had become part of my daily routine and simply accepted by myself. It wasn’t going to spoil my holiday, it would just limit the experience.
Queen Elizabeth itself is huge with thousands of holiday makers enjoying their holiday and the ship. I do recall seeing a lady onboard who had quite pronounced shaking. Knowing what limitations my essential tremor put me through I considered what it must be like for someone on board with Parkinson’s disease. To this point in my life I had never come across another person with essential tremor so I had not recognised the same condition as mine. Our paths parted and I carried on enjoying the ports of call.
It was then on the penultimate day of our cruise that whilst reading the daily bulletin I saw that there was a planned talk about essential tremor. I recognised this as being the condition my GP had explained I had when I was 14 years old. It really felt as though the structure of that day had been created to aid my awareness and to finally give me a chance to talk to someone who would understand.
That is how I met Jackie Farrell, NTF support groups coordinator and representative, who led a session explaining about ET and sharing awareness. Jackie was the lady I had seen earlier in the cruise, not a lady with Parkinson’s but a lady with ET. She was speaking openly about living with ET, not hiding it and being embarrassed about what others may think. During the talk Jackie talked about this being her first cruise and we shared the surprise of how chance meetings can lead further. Indeed it did as she explained that a new support group was being created nearby to where I live so I decided to get involved. By doing so I have met many inspirational individuals and gained much more of an insight into ET.
Throughout my life I had found ways of hiding or managing the tremor so that it was less visible. Now in my early 50’s it has dawned upon me that my primary goal was to hide the shaking from others, not to draw attention to myself and to ‘fit in’ whereas my real focus should have been to acknowledge them and develop strategies to live beyond them. This was my discovery and it was the voyage that led to self discovery.
I am now more open about my tremor and whilst still not yet comfortable asking for assistance or help when my tremor is particularly bad, I am strengthening my resolve to speak about it and share my understanding as I wish someone had spoken to me when I was in my youth.
There are a lot of us out there in the world that do have ET. If you have essential tremor you are not alone and by sharing our stories we may be helping others not to hide but to discover.