Everyone has a different approach when it comes to talking about their multiple sclerosis. We heard from Comedian, Jeanette and Poet, Lytisha, who found that creating their Multiple Shenanigans podcast, about life with MS, led to lots of laughs, feelings of empowerment and a sense of community.
In November 2019 I performed a 20 minute set in my show 'Jeanette and Friends' about life with MS. Despite having done stand-up spots locally and across the country over the past four years, and having had MS for 12 years, I had never previously mentioned it in my comedy because MS isn't funny, right?
Despite my worry that others would also be hesitant to find MS funny, it turned out that they did!
But, after a while of feeling awkward about not mentioning MS, I eventually thought it could be funny. Like the time a doctor at the NHS 'walk-in' centre told me to try Lucozade for a fairly destabilising case of vertigo, or the time a radiologist looked at me in disbelief when I absent-mindedly turned up for an MRI scan with about 40 metal hairgrips securing my ever so stylish up-do.
The show had been part of the Nottingham Comedy Festival for which I had been hosting a venue; booking acts, promoting the shows, and looking after the comedians. This also meant I had free reign to do my own stand up set about whatever I liked and if it failed... well, at least I tried. Despite my worry that others would also be hesitant to find MS funny, it turned out that they did! Not only did it work, I was told it was the best material I had ever done. A couple of people that I had known for quite a while through stand-up and improv approached me and said, “I didn't know you had MS!” Not many people did because I never knew how to tell people. For me, it turned out that making jokes about it was the easiest way.
I was diagnosed with relapsing remitting MS in 2008, after experiencing my first symptoms in 2007. The first two years were intense and I had quite a few big relapses. My neurologist said my MS was 'aggressive and highly active' and I experienced a lot of difficulties with walking, balance, bladder problems, vision, and cognition. After no luck with my first line treatment, my neurologist recommended enrolling onto a trial for the drug alemtuzumab (Lemtrada) at Sheffield's Hallamshire Hospital. When the trial began in August of 2009, everything changed for me. Although I still have significant symptoms mainly, I have not had a single major relapse since.
Encouraged by the success of my 20 minutes of MS stand-up, I decided to make my festival show the following year an hour long set expanding on this theme. But then, of course, Covid happened. As opportunities to perform dried up and festivals were cancelled, I decided it was time to go online. I would do a podcast, instead. This would discuss some of the things I had for the show, but also try to educate through sharing a lived experience and show that it is sometimes possible to laugh about the challenging things that happen in life.
But I didn't want to do a podcast alone. I had met Lytisha in 2016 at what we now call 'Memory Club'; a research study run by the University of Nottingham, where we both live. On the study, we would meet and discuss our experience of having memory difficulties due to MS and learn strategies to improve this. Ironically, I don't remember too much from Memory Club! However, I did remember having tea and biscuits, laughing, and thinking that Lytisha seemed to be an interesting and funny person. So, when I thought of doing this podcast, she instantly came to mind.
In the podcast we discuss our week, our outfits (we have a chosen colour to wear for each episode), and talk about a theme (often a word we have randomly chosen from a book). So far, we have discussed the sea, snow, interruptions, saucepans, and memories. It's surprising how often these will link to a funny anecdote to do with MS. Like trying to negotiate snowy paths gracefully whilst experiencing balance issues, or how I have ruined many meals by leaving food on the hob, forgetting and walking away! And of course interruptions brought many interpretations. From how MS interrupted our 'plans', to how brain fog can make you a terrible conversationalist.
I have found that us setting up the podcast has been really liberating.
One of the best things about doing the podcast, in addition to the positive responses we've had, is that we have such fun recording it. We laugh non-stop. And, although sometimes you see us struggle to remember things or process a thought, it doesn't matter - we just laugh about it. And with the extremely embarrassing or convoluted bits, we just edit them out!
I have found that us setting up the podcast has been really liberating. Getting to chat about MS with Lytisha, someone who understands, but is happy to laugh about it, makes it feel like we are part of a team. It's like we are taking ownership of the situation and we’re saying “We’ve got this!”
It has also connected us to a wider MS community and we've had some lovely feedback from fellow Msers who have enjoyed our videos and can related to what we are chatting about. If Multiple Shenanigans can help somebody who might feel like it is only them experiencing a particular 'MS problem', whilst at the same time entertaining them and making them laugh, then that is our mission accomplished!
I moved to Nottingham in 2000 determined to change my career path. This wasn’t quite the way I planned it. Previously I had a full-time job, went dancing, played badminton, ran salsa classes, socialised and was delighted to be finally free of the fatigue and cognition issues related to the ME I had suffered with since my late teens. Until the MS.
One day I awoke and I couldn’t feel anything from the neck down. I couldn’t make my legs go in the right directions, I was totally fatigued, again. My diagnosis followed swiftly in 2001. I figured I’d better find something other than dancing to occupy myself with. So, a few months after my diagnosis I went along to The Storytellers of Nottingham. I loved it, but there was no way I could keep a story in my head to retell. By 2014 the DIY Poets collective had encouraged me to perform and join them. Poetry is great and the audience don’t mind if you read from a page.
2016 was a pivotal year for me, I graduated with a Masters in Creative Writing, went to ‘Memory Club’ and met Jeanette; and joined the Social Model Writers poetry group. The Social Model Writers are a group of poets with various disabilities. Despite publicly performing my poetry since 2013, I had rarely mentioned my MS and how it affects me, until joining this group.
I had been curating and hosting poetry stages across the Midlands, and performing at festivals; until the pandemic changed all that. I was thinking about creating a podcast when Jeanette approached me about Multiple Shenanigans.
I hadn’t realised how little I talk about my MS, and the effect it has on my wellbeing.
I am thoroughly enjoying the experience of sharing stories and understanding together. The feedback from people with, and without MS has been really positive too. A good friend of 30 years recently surprised me by commenting, “You don’t talk about it much to non-MSers so it is really useful to get a better idea of what you are up against. I can be a better friend now.”
Jeanette and I laugh, a lot. We are sometimes vacant, vague, talk around the topic, but we do laugh and hopefully the audience do too. This podcast with Jeanette has felt empowering. I hadn’t realised how little I talk about my MS, and the effect it has on my wellbeing. I am really enjoying our discussions and finding the humour in the situations that perhaps other people don’t find themselves in. Unpacking some of those scenarios through discussion, finding that you are not the only one, leaves me feeling more positive.
Jeanette and Lytisha's podcast, Multiple Shenanigans can be found on YouTube.