The event had been planned for a few months. Having travelled for around four or five hours to what was a very heavily flooded part of England, we had all finally settled into our hotel on the previous night. The hotel was comfortable. As a team of people who had also the bonds of family and/or friendship between us, we had enjoyed a lovely meal, a few drinks, a lot of banter and chuckling.
Two of us; Debbie and Tracy, had not met in person, before, and so it was just a beautiful moment when those two met. I had absolutely no doubt that they would get on well and I have no doubt that they will become great friends over time; a process that was already well under way, online. When we went to meet another one of our team, Brendan, in the restaurant beside the hotel, it was also the first time that Kevin, Debbie and I would be meeting Brendan in-person. Again, somehow strange for I feel very much that I already know Brendan and I consider him a very dear friend.
As a complete surprise to us all, my wonderful cousin, Debbie, arrived a couple of minutes after we had all arrived and were starting our first drinks of the night. From the corner of my eye, I saw a yellow blur whizz by the window, outside. I thought nothing much of it until, suddenly, a big yellow banana ran into the restaurant and threw her arms around Brendan and Tracy! Yes, it was Debbie and she was dressed as a banana! It was so funny and this is another reason why I adore my cousin, for she is just a crazy, vibrant and joyful human being.
Here are a few photos of these wonderful moments:
This is what made our feelings, the following morning, seem somehow out of place. To be anxious seemed somehow ridiculous and yet, we were! The corridor from our rooms suddenly appeared to stretch out before us, in the way one might expect to see in a horror movie. I was struck by the emptiness of the corridor. The deep mauve colour scheme of the carpet and lower walls seemed somehow sinister.
“I actually feel sick.” Tracy said. “I know it’s crazy, but I feel pretty anxious about doing this.”
“Well, that’s not good; especially since this was your idea! Is it too late to cancel?” I quipped, in reply; knowing full well that neither of us would have cancelled and knowing that my comment would set her chuckling. Laughter always helps.
“Well, we’ll be alright.” she mused. “This is just nervousness and that makes sense, given that we are meeting people for the very first time.
“Absolutely.” I responded with gusto. “We can do this. It’s going to be fun but, just so you know, I have stage fright, too, and I’m starting to feel a bit sick, myself!” Tracy and I laughed and pushed the door open, walking into the reception area and off into an adventure.
We made our way round to the restaurant. There are five of us in the United Kingdom branch of our global team of volunteers. One, Brendan, would be joining us a little later. The other two are my husband Kevin and my cousin Debbie and they would be along within around fifteen minutes. For now, it would be Tracy, our Team Leader and dear friend, and I who would be walking in to meet the members of Parkinson’s Road support group. Parkinson’s Road is a support community, worldwide, that is formed of four specialist groups on Facebook. This event was about offering members the opportunity to meet with us, the volunteer team; known as the Admin Team. Here is a caricature I made of the UK Admin Team and which I have since turned into a postcard that holds our Facebook group details on the reverse, for publicity:
I am a somewhat socially anxious person, though people usually respond with surprise when I reveal this. I am often told that I come across as confident and self-assured. Being at the event at all was already a step out of my comfort zone, but something that I felt was incredibly important and so I would not have remained at home. We approached the entrance doors, to the restaurant building.
Years ago, I worked at an incredibly posh hotel in London. Royalty were regular patrons of the venue. On the door of the staff office, facing in, was a wonderful poster that a member of staff had written. It read “Smile, you’re about to walk onto stage.” That little saying helped me back then and it helped me now; I smiled, took a deep breath and remembered my childhood training for acting in film, television and stage. I inhaled a deep breath, smiled to myself and relaxed my shoulders, as I stepped in through the doors and turned to greet the members.
The stage fright disappeared within seconds. I don’t know why, but it simply felt as though we were meeting with family. These were people, some of whom I had not even communicated with, before, and yet there was a safety, a trust and a sort of understanding between us. In my prior work as a psychotherapist, I would call this dynamic between us all ‘unconditional positive regard’, or simply ‘acceptance’. We were all accepting of each other and nothing was a barrier to that. It just felt peaceful, natural and like the coming together of friends.
Through the course of the day, we enjoyed a meal and this was followed by a beautiful cake that had been baked by the baker at Cafe Amelia in the nearby town of Arnold. Brendan owns the cafe and he had invited his baker to make the cake for the event. The beautiful design was actually the cover photo image from the group page on Facebook. Beneath the sumptuous and delicious icing was a decadent chocolate sponge and chocolate paste filling. It was just perfect.
If ever you head over to Nottingham, do head to Arnold and look out for Cafe Amelia which, by the way, serves the most wonderful English Breakfast and the service is so fast and efficient. Our morning, prior to meeting the group members, was spent there and it was impressive.
The purpose of this article is simply to encourage anyone who may be living with a chronic illness or disease, to join an online community. It is also to suggest that you seek to meet up with people either from an online community that you join or to join a support group in-person in your local area. The value of this day had meaning to all of us and we all came away with a strengthened sense of belonging, commonality and new/closer friendships.
Throughout the day, I spent time chatting with these members of Parkinson’s Road and learning about them. It was not all a discussion about Parkinson’s. We all just talked about life and we laughed, there were a few tears here and there as people shared aspects of their illness but above all there was chuckling and laughter as we all just got to know each other, shared anecdotes, messed around and had fun.
I think many of us came away with renewed insight and understanding about how there are different approaches to life and to living with Parkinson’s. We all learnt from each other and we all came from different places, different walks of life and faced different challenges and struggles in life. We learnt that there truly is a postcode lottery in terms of the type of care the NHS provides; with some geographical areas so desperately in need of funding. We had different life experiences and came from different parts of the country and yet not a single thing divided us. We were in complete union and acceptance of each other due to the one simple value that I hold dear and which, I suspect, the others hold dear too; kindness.
For the occasion, I had been to a crafting shop and I’d bought some little wooden hearts. I asked everyone to fill in messages on the hearts. These would be messages from those of us at this gathering, to all of the members of Parkinson’s Road around the world and I would create one or two artworks to display them. With a few funny comments and a couple of drawings thrown in, here are the heartfelt comments from us to all of our members, wherever they are in our beautiful world:
After our meal, a few people had to start making their journey home. Some of us were staying in the hotel while others had to trek back to their home areas to pick life up again. I was deeply touched that some people had travelled on public transport for hours just to attend. That meant so much to me, especially given the extraordinary weather conditions which had led to road and rail closures.
For those of us who remained, we set up in the bar and we sat around for several hours playing games, chatting, laughing, enjoying a few more drinks and just building on getting to know each other.
When, eventually, there were just the Admin Team and one group member left, I finally had to go and lay down for a while. My symptoms were kicking off and I just had to get some rest.
That said, the others carried on, with occasional rest breaks and I rejoined them later in the evening for a nightcap or three and we shared that lovely sense of the achievement of the event and, amid the ongoing banter, there was the reflection over a day that was truly a lovely experience and one that I will always treasure. It was not solely about that one day, but this was about acknowledging just what had been achieved by the small group of people that we are. We had created an online community that stretches across the world and which now has over 2,200 members.
The Admin Team is made of the five of us in the UK; the place where Parkinson’s Road started, as well as our dear friends and colleagues in the team who are in Canada, of which there are two, the USA, of which there are three and newly, Australia, where we now have one newly joined Admin Team member.
If you, or someone close to you is affected by Parkinson’s, come and visit us at Parkinson’s Road, on Facebook. We are more than a support group. We are a support community, worldwide.
(C) Dean G. Parsons. 2019.