MS is invisible. You can’t see it by looking at me. But we can’t see the hidden pain a lot of people carry around.
We can’t see broken hearts from relationships that didn’t work out. We can’t see the pain of grief. Almost everyone has pain. Almost everyone has a significant challenge they have to face every day.
Multiple sclerosis is a deeply isolating experience. It’s painful at an existential level. Relapsing-Remitting Multiple Sclerosis (RRMS) doesn’t mean a big and sudden attack disappears quickly. Lesions take time to heal. Sometimes months. Sometimes years, or never quite.
Walking around the block, my morning ritual, a 10-minute affair, would suddenly take half an hour and I would have to lie down to recover. The exertion of movement. These heavy dead legs that had to be pushed through wet cement.
And the fact is that we are never truly sure if we’ll get better. Every attack brings doubt. What if I don’t this time. What if I don’t get better? What if I get worse and worse.
I’ve laid on my bed in the middle of the day covered in wet tears because my body has been paralysed on one side for the fifth, sixth, seventh day in a row.
Some people think MS is not painful, that when you can’t feel anything, it doesn’t hurt.
MS can be very painful. Nerve pain hurts. Nerve pain is a blowtorch. Absence hurts. Absence of sensation and ability. When your hand becomes a claw. Unable to write. Unable to hold a pen. Unable to type. There’s pain of loss.
Has this happened to you? I couldn’t feel blood flow in my arm. Like it had completely gone to sleep. A dead arm. I worried it would need to be amputated, but it was warm.
I’d hold my arm down straight. Swing it around to get the blood flowing . It was like an arm transplant that hadn’t taken. It wasn’t mine — this lump. It didn’t work. It didn’t feel. It had been stitched on by Frankenstein before modern surgery.
I’ve felt the same in my leg — both of them at different times. That they weren’t mine. but they weren’t connected very well to my brain. They were lumps of meat, not human legs with feelings. Replacements for blown-off legs. Inferior lookalikes.
One of the most saddening experiences many people with MS face is having close relationships with partners fall away. That’s when isolation is at its most profound.
MS is something you ultimately do alone.
No one else knows exactly what it feels like. Try as I might to put it into words, it’s ineffable. The experience is unable to be satisfactorily conveyed. MS is harrowing.
It’s a rocket ship into deep space you do alone. It’s the solo flight into the unknown.
Dr George Jelinek says at the end of the MS bible Overcoming Multiple Sclerosis, “MS can be a good excuse to begin a more profound inner exploration and journey.”
MS is the territory of Me, Myself and I. Conversations with God.
Is there a lesson in this? Why not me? Where do you go for answers when you are flung into the black? Do you go deeply within?