It isn’t really MS I want to write about. I want to write about my mind, rather than my brain. And about Jiu Jitsu (stick with me…it might make sense at the end).
Both my brain and my mind have been changed by MS. My brain has been physically damaged. But it is the effect on my mind I am interested in. My diagnosis has changed my mind. And it isn’t all bad.
I had to get better acquainted with my mind, to ask questions and explore. Am I in denial? Am I afraid, nihilistic? Can I cope with the worst MS may have to offer? Am I over dramatic? (Probably, yes). So many questions! I am not comfortable. My mind is restless. Time seems limited and I need to fill it up with life.
A month after my first discernible relapse in 2018 (optic neuritis- it didn’t get diagnosed) I started going to Brazilian Jiu Jitsu classes. I was shy, self-conscious and pretty unfit. Fighting is hard, as it turns out. You have to be content with being bad at it, for a long time. Lots of losses. It is hard to keep your ego in check at first.
I kept showing up to classes, through two further relapses, experiencing things I had no answer for. A nagging feeling in the back of my mind. Could it be MS? Surely not, just being dramatic again. Probably.
I quit smoking. I got injured, but I kept coming back. I started to become more confident, outside of the gym too. When I was later diagnosed with RRMS in June 2020, my MS and Jiu Jitsu became inextricably linked in my mind. I had started down both of these paths at the same time, I just didn’t know it for the first two years. When I was given my diagnosis, it was one of the first questions I asked my neurologist: ‘Can I still do Jiu Jitsu?’
I am a blue belt now, nearly four years later. It’s still early days for my Jiu Jitsu, and it’s still early days for my life with MS. My mind needs one to help fight the other. When I feel strong, when I am able to fight hard, improve my technique, when I learn, I feel confident that I can manage the mental consequences of MS. And I am not the only one. I have sought out others with a diagnosis who cope in the same way I do. With Jiu Jitsu and pushing themselves physically. By literally fighting. It works for me. But we are all different.
I am so grateful for my teammates at the gym. The support is unrelenting. It’s an incredible community. My teammates don’t patronise me, they push me to be my best. I need that. I don’t want the cotton wool.
MS has made me braver and this has also helped my Jiu Jitsu progression. My mind tells me, don’t wait, train while you can. Enter the competition. Spar another round. Do what scares you. If you don’t do it now, what if you can’t next year? Or next month, even next week. There are no guarantees now. Explore and find joy in things are easy to take for granted, or that might seem too tough.
I am literally an MS fighter. My mind needs this confirmation. Especially on the days when I am in pain. When my muscles are spasming. When my skin feels like it has electricity running through it. When Uhthoff's phenomenon makes it hard to see because I’m hot. When the insomnia kicks in. When I am lying in an MRI machine or hooked up to an IV of medication in a hospital. I will show up on the mats and train the same day, because my mind needs that contrast. I am always seeking that contrast.
My circumstances and disease progression allow me to do this right now. There are other ways to fight. None are more worthy than others. Find what makes you feel strong.
Overall, I am grateful MS has given me a new relationship with my mind, even if it is harming my brain. I am grateful it has driven me to push harder, to test my boundaries, to jump out of a plane, even. Things I wouldn’t have done before. I want to challenge myself, to understand who I am now with this disease nipping at my heels.
MS is something I have to find a space for in my mind. It isn’t an easy adjustment to make, there is limited space and it is overstaying it’s welcome. My relationship with MS isn’t settled, it will need to evolve over time, along with the disease.
But that’s not for my mind to linger on now.
Now is for Jiu Jitsu and joy.
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I was diagnosed with RRMS in June 2020, having experienced three relapses in the previous two years. My current treatment is Ocrevus. I am a Brazilian Jiu Jitsu blue belt, training out of Carlson Gracie Ashford. I am also a photography enthusiast and a full-time lawyer.