I am going to celebrate the wonderful friends I have made since being diagnosed.
It’s almost seven years now, and seems like an age ago. Like everyone else, I had no idea that there could be a growing community of people living with dementia who were going to disrupt the established rules and behaviours around the disease.
Why was I unaware? Because no one in the establishment knew…or cared to find out. Because they did things how they did them. And after diagnosis there was really no hope.
They gave each of us a riskerectomy and told us to prepare for death.
But then, well, somehow, by chance, I found out about a ‘conference’ meet up in Llandudno, where I met some of the most wonderful people in my life. No names; they know who they are.
Actually, one name. Chris Roberts. It really was him that lured me into his den of friendship and disruption. And the DEEP network.
From that weekend flowed my stream of activity, meandering wherever it took me. London, Manchester, Birmingham, Sheffield, Cardiff, Nottingham. Every event brought a few of us together for a shared day or two. We often wound up near/in a Wetherspoon. Or a pizza restaurant. Remember that amazing tenor, Damian, drowning us all with his beautiful voice in Doncaster?
Conferences, training events, consultations, planning days. Speaking truth to the establishment, hoping to influence change. Often telling others starting their journeys what is possible, encouraging, mentoring…leading.
But we met only occasionally, and often by chance.
Our networks expanded. More people living with dementia became involved in the work. We shared the load, broadened our backgrounds and skills, developed trust and togetherness.
Then came Covid. All our travel and meetings stopped. Abruptly.
And thus erupted…ZOOM.
For a year many of us have had weekly zoom meetings. Chats, jokes, catch ups, sad moments.
We’ve done serious work on research and ethics, dementia pioneer projects, dementia diaries, and craftivism.
We’ve helped each other, led creative craft sessions, made films.
We’ve shared our blogs about our own lives and our work together.
Above all this though, we have grown wonderful friendships. We look forward to the sessions that mark our weeks. And God we have fun. Stupidities (and crudités) that might never happen face to face in a busy day.
We have sorted out into groups that mix well…naturally. Some leave, some join…just like any other friendship group system in normal times.
We have missed our families, and our hugs…Oh our HUGS. We’ll have to hire a secret venue in the summer so we can just hug, unseen. (20 seconds for trust…remember.)
When days are miserable, or pain is unbearable; when loneliness hurts and there seems no point…we can look into our diaries and…there…next Monday…there’s the next Monday Madness, or Tuesday Tonics. A DEEP group facilitators meeting, or the dementia diarists.
There’s always some crafting that we can do, painting or carving or taking fabulous photographs of barn owls or teal. The moon wins for popularity just now.
There’s the allotment or garden. The lanes and hedgerows. The park.
But as evening draws in, and for many a long sleepless night, we can always remember the next meeting to look forward to.
That, my friends, is what the last year has given me. Your friendship and trust and fun.
Thank you all.