falling with style

My legs don’t work the way they used to. Every day, there’s a little reminder. Going down the stairs I need to concentrate. Something’s missing. Something that I didn’t even know was there until it went away. An unconscious ability, like a reflex, that I took for granted, unaware of its existence. I’m not even sure how best to describe it, except for perhaps as confidence in the next step. Walking, running, descending a stair case or a ladder; these things are sort of like touch typing, or the most basic aspects of hand-eye coordination. They should be like being able to close your eyes and touch your nose. It’s a simple awareness of oneself in relation to the world. 

And it’s disappearing. Every step down the stairs requires complete focus; balance doesn’t come naturally, it must be willed into existence. My legs are strong; I can run and walk long distances. But every step is a choice. There is no longer the inevitability of one foot simply following the other to propel me forward.

It’s frustrating, but I’m getting used to it. I can still run, so I do. I can still walk, so I do. I can still dance.

To look at me, I wouldn’t strike you as much as a dancer. It’s one of the reasons I like dancing so much. It’s like a nice little surprise that a stocky guy like me isn’t lost on the dance floor, that I can, should the situation require, bust a move.

I don’t do it very often. Weddings; big parties; that sort of thing. I’m not a clubber. I’ve never gone out just to go for a dance. In fact, the thought of that horrifies me - I’ll turn quite taciturn and grumpy should it ever be suggested. 

I never took a dance class. I just liked moving to the music. My legs seem to respond to the rhythm on their own. It was a rare treat; a release. I went where they took me. My inspiration, if I had one, was probably John Belushi as Jake Blues in The Blues Brothers. Similar build, unlikely dancer, but man, he just loses himself in it. There’s a freedom to it. No thinking, just dancing. 

I can’t remember which wedding it was that I realised a part of that was gone. I don’t know what song it was that my legs couldn’t move to the music. It’s a mystery what nerve pathway translates music to movement without a thought. All I remember is a collapse in my heart as I got on the dance floor and my legs wouldn’t move without me telling them to, and even then it was like two lead posts below my knees. I got scared that I’d twist an ankle as I couldn’t count on my balance or coordination. Every step to the beat was preceded by a 1,2 in my head. I had to keep track rather than listen to the music. It wore me out quicker. 

At a party a we while ago, there was a lot of dancing. I forced myself to join in. It was a good party, full of good people. The tunes were great. But my legs felt slower. Out of control again. They weren’t so much moving to the beat as they were responding to gravity. I remembered Woody in Toy Story’s outrage at Buzz thinking he could fly. That he wasn’t flying, he was just falling with style. It felt apt on the dance floor; I was flailing, and my legs were just falling with style. 

I’ve been trying to figure out why it bothers me so much. MS has far worse consequences than making you feel awkward on the dance floor. You’d think the chronic pain and constant exhaustion would be more upsetting, but nope, it’s the fear of losing the ability to dance with abandon only 5 or 6 times a year that brings unease. I'm still going to try, obviously. I will be dragged from the dance floor a sweaty mess until, quite literally, I can't dance anymore. But in the meantime, there's that feeling that something is missing. A sense of something taken away that I can't get back. And the touch of fear that it's just the beginning.

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I’m not the chatty guy in the hospital waiting room.

That’s someone else. I’m the guy with his nose in his book, reading and flipping pages and not being there. Aside from the nurses, it’s just me. Just me and the chatty guy. 

He arrives with volume. 

“I hate these things. Always scare me. They petrify me, in fact. When I was first diagnosed, they scared me to death.”

I look up enough from my book to see him gesturing towards one of those circular, wire-framed, rotating racks. Somewhere else it would be full of postcards, or ordinance survey maps. Here it is full of information pamphlets.

I manage a semi-nod and maybe even a grunt. He disappears to produce a urine sample and I continue to read. I hear a flush and he sits down again and it’s another paragraph before I realise my plight is hopeless. 

The chatty guy in the hospital waiting room will not be denied.

“So how long have you had MS?”

Everything stops. I see the sunrise through a large glass of whisky from my bedroom window in the summer of 2012. I swallow my first response that it’s none of his chatty fucking business when I got MS. This is a place of shared suffering. 

“Three years.” 

A couple of weeks ago I sat on a couch in an old wooden house with an old friend I’d not seen in half a decade and I told her about it and she smothered me with a hug so warm and full of love I didn’t know what to do.

Chatty guy pulls me back.

“How’re you doing?”

I’m tired and fucking sore, dude. But I’m fine. I’m managing.  “I’m fine.”

“Walking ok?”

That’s the fucking scariest question you can ask. “Balance is a bit tough.”

“You do yoga?”

Fuck off. “No.”

“Do yoga, man. It helps with the balance.”

Fuck off. “I run. As much as I can.”

“Wow. Running with MS?”

As long as I can. “Keeps the fatigue at bay.”

He’s going on to my medication. How am I finding it? Fine. Better than injections. So much better than injections. He mentions how scared he was. He points again at the rack of pamphlets about living with MS and tells me how they petrify him. He then tell the nurse that he’ll get all his info from the internet and I know why he’s scared and maybe why he’s so chatty. I’m called into the office and nod towards him and mumble some attempt at “nice chatting with you”.

My meeting turns out to be a meeting to arrange more meetings. I need blood tests and an MRI and some sort of schedule. I leave. Chatty guy is still chatting to the nurse. The MS ward is on the 4th floor. Quiet; away from the rush of the rest of the hospital. The elevator’s crowded but they make room for me and an old man with a cane. 

As I leave the hospital it occurs to me that the chatty guy in the hospital room is the only person with MS I’ve spoken to since I was diagnosed. And I have no idea what his name is.


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