Originally published in Pala Press, Issue V: Subterrane
MULTIPLE SCLEROSIS is a sleeping giant, a titan, buried deep in the pit of the immune system. Its flesh is leaking spores beneath the cellular permafrost as it stirs; they burst through the weakest cracks in the ice, seeping into the blood-brain barrier. They march upwards and outwards and grab on to the fatty layers of myelin protecting nerves and munch and chew and gobble them up, biting great chunks out of the brain and the spine and spitting them back into the giant’s mouth – greedy and expectant and angry like a baby gull.
When the giant awakens inside of you it feels like you are being folded inside out. Your legs feel wet though they are dry to the touch and are filled with pins and needles so vicious it is as if they are being scraped with sandpaper whenever fabric meets the skin. Your breasts are numb but also wrapped in an insatiable itch that, whenever you try to appease it, rips open the nerves and sends a burning, searing pain through your ribs. Your toes – perpetually trapped in a spasm – feel swollen and sore and puffy, little blistered sausages, but look as angular and bony as they always have been. But all of this is internal, of course. On the outside, you look fine.
The aftermath of and recovery from the attacks are as unpredictable and variable as the attacks themselves. The permanency of symptoms resulting from demyelination is dependent on both placement and severity. Whilst the brain has a large surface area and immeasurable neural pathways, the spinal cord operates as a one-way system. One way in, one way out. If a hole has been dug, there is almost no way of getting past it. You just have to wait until the hole starts to fill itself in. When this period of rebuilding [renovation, restoration, conservation] goes well, signals can pass through the damaged area fluently. Normal functioning is restored. You have been rewired. Your sealant has been replenished. You have been given a second chance. Such a seamless recovery, however, is rare. These holes are as dense and deep and stubborn as an acne cyst you’ve squeezed and scratched as you try to push the pus to the surface but only succeed in pushing bacteria and debris further into the epidermis. You’ll always have a scar.
Imagine a plant. No, a tree. On the surface the bark is perfect: firm, smooth. But underneath, inside, it’s rotten, reduced to a black mass of mush and dust and mould, worms and termites are feeding off the flesh and you can’t see any of it unless you cut it open. It’s coming from the roots. Something’s got in there, something that shouldn’t be there, and it’s spread throughout the whole tree. Its limbs are weak and brittle – even the ones as thick as your thigh – one firm chop and it would come crashing down, all the worms inside it, spilling out and over the grass. You can glue that branch back on, tie it together with string, stitch it with wire, even, but it’ll never be the same: it’ll never fuse to the trunk. That break will always be there.
Or, imagine a village. It’s placed at the bottom of a valley. There are trees and houses all up the sides, a deep indentation of life. It’s peaceful, idyllic. But the soil slips and a tree starts to slide downward, uprooting houses and fences and pathways, one after another, until they land at the bottom of the valley on top of each other, a great blockage, a clot in the landscape. Nobody can get in or out of the village. Communication is cut, phone lines are down, water supplies are severed. It takes months for the village to rebuild itself. The buildings are reconstructed using the same bricks but they’re all in a different order and upside down. The roads are rerouted around the damage on the hillside, but they are long and meandering and bumpy. The villagers are exhausted from the labour, struck with an immovable fatigue that feels like a heavy curtain dropping upon their heads. The village is still the village, but everything feels a little bit off.
It is difficult to communicate the multiplicity of MS symptoms simply. Analogies are helpful. But the unfortunate truth of the matter is that no two cases of MS are the same; lesions vary in size, location, and severity. We are connected by this progressive, bodily invasion, yet we are entirely alone in our experience. I look into the eyes of others who have MS and am struck by the immediate understanding between us – we can sense each other’s broken branches.
All of these thoughts come and go just as frequently and unpredictably as the physical symptoms that accompany an autoimmune disease. You get used to them just as you get used to everything: all the old sensations, all the new ones, all the side effects of the handful of pills you swallow in one go every morning. It’s relentless and it’s cruel but it’s somehow manageable. Somehow you just keep going. You swing your legs over the side of the mattress in the morning and when your feet support your weight you think: yes, another day. And you stand up.
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