On the evening of Valentine’s day 2010, me and my dear friend Steven stood in the courtyard of his halls of residence making madcap plans for our future. We are going to be artists with glittering careers, we will both win the Turner prize, we will leave a trail of broken hearts behind us as we travel the globe. I was 18 then, and I can’t remember all the ins and outs of our schemes, I think I was going to learn to drive and then go everywhere in a second-hand black cab, it’s possible silk scarves and oversized sunglasses would be involved. Matching Brogues were definitely mentioned. None of that is really what’s important, what’s important is this – on that moonlight night (it’s unlikely it was full moon but lets imagine it was for maximum impact) Steven and I made a solemn promise that whatever happened after we graduated from university we would stick together, we would live together and more importantly neither of us would ever be moving back to the tiny rural home towns we had worked so hard to get away from. Spoiler alert: That’s not how things worked out.
Fast forward to February 2012 and my plans for the future haven’t really changed. Steven,me and a few other friends have found this beautiful house we are planning to sign up for and rent the next year – the year after graduation. I am doing an insane amount of volunteering on top of my degree work, my plan is to get a job in the museum sector so I can at least work next to art until I can afford to live off making it. I’m seriously considering doing an MA next year in something related to curation or museum work. On the surface, it looks like I’m doing really well, but the truth is that I increasingly feel sure something is wrong with me in a way that I don’t know how to express. I’m always exhausted to the point I can’t think clearly, but I think that’s normal. I mention how tired I am to a few friends and everybody says the same thing, they are tired too, it’s normal, it’s everybody, we are all going out too much and working too hard, nobody is getting enough sleep. Still, I can’t help but feel like I’m falling behind somehow – I put it down to a personal failing, maybe I’m just lazy, maybe I’m too disorganized, maybe I’m a hypochondriac.
Then there’s this day and I’m volunteering to man the craft table at the Lunar New Year Event that this museum is putting on. I felt terrible that morning, I told myself it was nothing, I was being stupid and went in anyway. Then I stood up to go for my lunch and I had no feeling in my left leg. I ignored it for a week and then grudgingly went to the hospital to get it checked out on my Mum’s insistence. I went in convinced I had a trapped nerve. Spoiler alert: it wasn’t a trapped nerve.
I was given a provisional diagnosis of MS when the hospital discharged me a few days later. I was determined I wasn’t going to let my diagnosis change anything so I worked my arse off and graduated on time and signed up for a house with my friends. It was easier while I was still at uni – I had my degree to focus on, but once I’d finished it felt like everything was starting to unravel. The house we signed up for turned out to be completely grim – it smelt and it grew things and when it rained water ran down the inside of our Living room wall. To make matters worse my neurologist advised me not to work for three months after graduation so I was stuck in the house all day while my friends were out at work. I remember one particularly grim day when I started to feel like the mould on the inside of the house was somehow this perfect metaphor for the sclerosis on the inside of my brain, so I went out for a walk and got chased by a man who was convinced I’d stolen his drugs and almost immediately after that a seagull fell out of the sky and landed dead at my feet.
I got called back to the hospital for a second MRI scan, and when the results came back confirming my MS diagnosis my neurologist recommended I started taking drugs. I would need to self-inject I knew there was no way I could carry on living in Bath. It felt like a disaster like I was failing and admitting defeat on all the grand plans I’d made for my future that theoretically moonlit valentines day night, at the same time though, it was a huge relief.
I obviously have a very different perspective on that day and what I can see now is this – it’s possible that I did have to give up on the life I had imagined for myself once I was diagnosed. That’s okay because giving up on those plans (which probably wouldn’t of worked out anyway let’s be honest.) let me make new ones. I am so happy with the life I’m living today, I love my tiny house in the tiny village that I grew up in, I love being close to my family and my overweight cat. So much good came out of the decision I made to move home, none of what I have would have been possible if I’d stayed in Bath. That’s obviously not the whole story. Things are hard sometimes, I’m a person, I have person problems. But I’m happy with the choices I made. I didn’t give up on everything, even though that’s how it felt at the time. I still writing I’m still an artist (I spoke at the Tate Modern a few weeks ago.). Really when I look back I didn’t give up on anything. I just made some adjustments.
If you’ve just been diagnosed or you’ve had a particularly bad relapse, or your MS has progressed – if you are in a place where you feel like your whole life is falling apart, what I want to say to you is this, it’s okay if you need to let go of things in order to be kind to yourself, it’s okay if you have to change your life. I don’t know what your new life is going to look like, but I’m reasonably sure of this, there will still be joys.
Hi, I’m Letty McHugh an artist and writer living in Haworth, West Yorkshire.
My hobbies include falling off ill-advised clogs into oncoming traffic, an adventure sport I created and expect to sweep the nation soon.
I’ve been making jokes about my MS on the internet since I was first diagnosed with RRMS in 2012. You can read more posts from Letty at www.lettymchugh.co.uk