What is your name and where do you live?
My name is Jay, and I live in a rural village on the edge of the Cambridgeshire Fens with my dog, Daisy.
Can you tell us a bit about yourself?
I’m a former events professional, working many orchestral concerts (when I was around 11-13 as a performer) and at festivals and gigs across the UK as a Stage/Area Manager, Compere/Host, and even as a club & dance DJ nationwide; I was volunteering at major events right up until a few months before my emergency surgery in 2021.
As a ‘perennial volunteer’ for most of my working life, some highlights include spending three years as a volunteer on community radio in Cambridge (2007-2010), where I secured us recognition for Innovation in the Community which was awarded to us at the House of Lords. With a small team, I helped launch the first ever five-days-a-week Breakfast Show on community radio in Cambridge, in addition to my evening show where I championed local music talent. I’ve even been involved in Community Development work in new-build towns!
Fighting for the underdog at a grassroots level is something that I always seem to be drawn to and so there are a lot of worthy campaigns I’ve been involved in over the decades. But, one I am very proud of was helping to raise £10,000 in one day for Syrian refugees. It’s that ‘fighting for the underdog’ spirit that first brought me to Myelopathy.org…
What is your role at Myelopathy.org?
‘Awareness Activist’ and a kind of unofficial spokesperson for the charity is probably the best way to describe my role. Making noise, generating creative ideas, and general campaigning on the grassroots level – helping make the everyday public aware of myelopathy…before it is too late!
Part of this role is my plan to take an ex-library bus on the road, to events, spreading awareness via a pop–up tea bar & exhibition display. I am currently fundraising for this project over at https://gofund.me/57823ed4
How did you hear about Myelopathy.org?
When recovering at home following my own myelopathy surgery in January 2021 (rapidly-progressive DCM resulting in emergency decompression to C4-C6) I sought to know more about my consultant surgeon because I had been told he held a special interest in my condition; I needed to know how and why in the space of 48 hours I’d gone from zero to 100mph, admitted to hospital for an emergency slot at the weekend and then operated on so quickly – in the middle of COVID too.
My surgeon was Dr Mark Kotter, whom I quickly found out was a co-founder of Myelopathy.org.
Why did you get involved with Myelopathy.org?
It was via the website and the Support Group on Facebook that I learned about what had just happened to me when I had emergency surgery. It’s also through the support community that I became friends with Iwan Sadler – another co-founder – and I began to realise that nobody knew what myelopathy was until they needed surgery and, not only that, but DCM affects around 1 in 50 adults. The real shocker, though, was realising that 70% of People with Myelopathy (PWMs) didn’t know until it was too late and they were mobility disabled or even worse, tetraplegic; that’s 35 out of every 50 PWMs!
So, in amongst my creative flow of ideas for raising awareness, I came up with #OnBorrowedSpine as a national campaign to make more people aware of the signs and symptoms of myelopathy.
What has your experience been like with Myelopathy.org?
It’s been positive. Ideas are regularly exchanged with Iwan – the better ones being filtered through where appropriate – and the support community are very welcoming and helpful to newly diagnosed PWMs and their carers; something which is always heartwarming to see.
The focus of the charity appears to target professionals primarily, so I’ve always seen that there is a gap I can fill by targeting potential PWMs or people who may know a PWM. I want people to have conversations that may spot warning signs earlier and signpost Myelopathy.org as the only specialist charity for this disease.
What do you do when you are not working at Myelopathy.org?
There is no ‘day job’ and I can no longer do what I used to do at festivals and events so a lot of my time is spent either researching or advocating. I’ve helped and am currently helping some people as they go through their own adult ADHD/ASD assessments and diagnoses because I know how unsettling and life-changing the journey is (I was diagnosed aged 46, just three-months before my surgery).
Likewise, with spinal conditions; through my activism and advocacy via my social media, friends have discovered stenosis without myelopathy, ankolysing spondylitis, and even stage IV metastatic thymic carcinoma – the latter diagnosis eventually led to helping me acquire the #OnBorrowedSpine bus.
What do you do during your spare time?
Because I am neurodivergent – ADHD with strong autistic traits – I go through periods of intense hyperfocus where I am either learning about something or being intensely creative. I’m also slowly, very slowly, refurbishing the bus by going back to bare bones and building upwards. It’s the physical ability to complete tasks that has been affected most by myelopathy, so I seriously underestimate the time ‘new me’ will take to complete a task, sadly. I’ve also been diagnosed with a multifactorial complex fatigue disorder post-surgery.
Tell us two truths and one lie about yourself.
- TRUTH: I have a purple/orange aura which has been captured on photos!
Apparently, the meaning of those colours is;
• Purple: intuitive and empathic, and
• Orange: creative, action-oriented, and positive;
… which pretty much sums me up, I think!
- TRUTH: I am so clumsy and accident-prone that I have my own hashtag amongst my friends of #CalamityJay
- LIE: Hmmm, morally I can’t lie unless it’s a statement of complete nonsense. Therefore, I’ll leave you wondering if I really do have a Unicorn in the Forests of Dartmoor, cared for by retired Gnomes… or not!
(Pssst, ps; don’t forget to donate at https://gofund.me/57823ed4 )