This is how I fight
I was talking with a fellow MS-er today about the lifestyle changes we have had to make to manage the disease. We both feel an instinct to rebel against the rules imposed upon us by this disease, especially the strict specific diets that purport to help. I told her that our rebellion against MS is a good thing, that it's how we have survived. She challenged my use of the term. To her, MS is a part of her and fighting it is akin to fighting a part of herself. She told me she rebels with MS, rather than against it. I totally understand this perspective, and I respect it, but I also find it abrasive.
MS is a part of me, literally. It is my own immune troops mistaking my nervous system infrastructure for enemy troop movement and opening fire. In that sense, my MS companion is right, fighting MS is really an example of fighting yourself.
I’ve heard people say to me before that I should maybe ‘make friends’ with my immune system, or with MS itself. That all we need is some level of collegiality, an uneasy alliance, negotiations, tea and cake in nomansland. And to this I say, kindly, and with great understanding…
Bollocks.
To me, MS is a monster. It prowls the edges of my defences, waiting for opportunity to strike. When it attacks, it takes whole chunks out of my nervous system, leaving me in pain, with limited vision, with spasms and numbness and spasticity and the total inability to control when and how much I pee. It makes swimming a battle with my own limbs as we fight between physical strength and absolutely drowning in defeat.
I get strong not so that I can lift a heavier muffin to the lips of my enemy, but so I can withstand its strikes. I work out, I eat right, I drink enough cranberry juice and prune juice and eat fibre and apricots and blueberries so that when this monster comes for me my body is ready. When I stumble around the kitchen to cook a home meal it isn’t to invite my enemy to dinner, it is to be better fuelled for when it lunges at me across the table.
This foe will strike me again. There is no doubt of that. And we don’t break bread with an enemy we know will forsake any truce we draw up. We ready for the inevitable betrayal.
The question for me isn’t about whether we fight, but how.
I do ready my body for the physical conflict. When this monster strikes again, and strike again it for sure shall, I will have the strength, the agility, to give myself the best chance I can that I will get out of that encounter alive and in one piece.
But I also fight on a totally different front. MS doesn’t just attack your nervous system. The constant threat, the loss, the symptoms themselves, the shrinking of your world, all represent an assault directly on your psychology. MS threatens your mental health at least as much as your physical health.
But mental fortitude cannot be strengthened with a barbell. This is essentially the premise of an outstanding film Everything Everywhere All At Once. Our protagonist, Evelyn (played by the incomparable Michelle Yeoh), is used to fighting. Her whole life has been one long battle. But despite her best efforts she is losing her daughter, both her relationship with her, and perhaps much worse, she can see that her daughter, Joy (played by the incredible Stephanie Hsu) is losing hope. She uses every skill she has to save her, but this is not an enemy she can fight with her fists. Luckily she has Waymon (played by the legendary Ke Huy Quan), whom she has considered weak, something of a pushover, a hopeless optimist. The story is told through the multiverse, wild martial arts, and a bagel with literally everything on it, but beneath the hood the story is deeply Human.
In the height of combat, Evelyn is ready to do ceaseless battle again with endless opponents to save her daughter. But knowing this enemy is not one that will fall to physical blows, Waymon reaches out to her. He says:
‘When I choose to see the good side of things, I'm not being naive. It is strategic and necessary. It's how I learned to survive through everything. I know you see yourself as a fighter. Well, I see myself as one too. This is how I fight.’
We need Evelyn’s strength. We cannot hope to defy such an imposing foe without the physical power we’ll need to stand against it, to literally push ourselves off the ground when we stumble, to rise up when we fall. But we also need Waymon’s optimism, his kindness. MS is going to take our heart as much as our skills. And fighting MS requires love as much as it does a sword.
So while that vigilant part of myself will always draw her sword. And while when our freedom and life is on the line, fighting is all there is, fighting is who we become. Maybe our sword isn’t our only weapon, and maybe we must also fight by seeing the good side of things, by laughing, wielding kindness like a shield, and connection like a spear.
Maybe my friend has a point. Maybe I am Evelyn, trying to strike an opponent that will not fall to physical blows, and she is my Waymon, telling me that there is more than one way to fight. I'm not ready to lower my sword quite yet, but I can be kind, I can laugh.