Very Slow Olympics

I never thought that life could get this small,
that I would care so much about a cup,
the taste of tea, the texture of a shawl,
and whether or not I should get up.

I’m not unhappy. I have learnt to drift
and sip. The smallest things are gifts.

~ Julia Darling (from ‘Chemotherapy’)

All I can tell you is what I did; whether or not it is the thing that made me better is a question I can’t answer.

On 17 November 1999 I cut short my morning run. I walked back up the driveway. I blinked. I opened my eyes again and realized I had just fallen asleep. My world had changed. I sat at the table and considered the weight of my breakfast spoon. It was too heavy.

Myalgic Encephalomyelitis (ME) is a condition I still can’t properly pronounce, let alone understand. Apparently that’s what I had. Actually, I had severe glandular fever, but six months later, when I was still exhausted by the thought of assembling a full sentence at dinner parties, I was diagnosed with ME.

It’s different to being sleepy. Your very bones are tired. You are exhausted from lying down, from the weight of your limbs on the world. This may be hard to understand, that despite the complete absence of activity there is never any rest, and even bed is no escape.

Every moment feels late at night, like the vampire time when you’re stuck on the couch knowing if you don’t move soon you’ll never get to the bathroom to clean your teeth. It’s one long party, but always the day after.

Most people call it Chronic Fatigue Syndrome (CFS) which sounds a bit lazy to me, like an excuse rather than a reason. Fatigue has many causes, and sometimes the diagnosis of CFS is a convenient explanation. I prefer the grandiose specificity of Myalgic Encephalomyelitis.

Hardest for me was the fatigue in my brain, the collapse of my ability to think clearly. I lost random, ordinary words. I was unable to finish sentences. For example, I am looking at an object: it is yellow, rectangular, and I would like my wife to pass it to me so I can spread it onto my toast. I ask her to pass the… but it is gone. I can’t think of the word, and I can’t even describe what I want to do with it because I have also lost the words for ‘spread’ and for ‘toast’. So I point. Everything becomes ‘stuff’, ‘that’, or just a few frustrated clicks of my fingers.

Conversations become burdensome. I am fine for a few minutes until, wham, I hit the wall and the words flying around me become goobledegook. It is a concentrated effort to understand what someone is saying to me, and I struggle to reply.

I avoid the telephone. I can’t play the piano for more than a couple of minutes. I can’t concentrate enough to read. I certainly can’t write. All I have ever wanted is time to write my elusive novel; now I have all the time in the world but no energy to exploit it.

The greatest blessing during this time was my wife, Debbie, with whom I had the most topsy-turvy arguments:

“Go back to the couch.”

“No. I want to wash these dishes.”

“Marcel. Go back to the couch and watch TV.”

“But I just want to finish this plate.”

“No! Go and watch TV now!”

It sounds pleasant. It wasn’t. I had been struck down in my mid twenties. I felt robbed. All of our plans went on hold. I tiptoed around the edge of depression. I worked hard to develop my own theology of denial (‘God has far more important issues to deal with than to heal me, and besides, I don’t have it so bad compared to some people,’) Perhaps God did have something to do with my recovery. There are plenty of people who would suggest he did. Anyway, here’s what I did for my part.

After about two years I had a conversation with Debbie’s uncle, a medical consultant, who offered the view that one way to look at this condition was that my body had reset itself, was back to zero, in a sense like that of a baby. The idea was that I needed to build it up again, very slowly. It was a turning point for my perspective as it put me back in control rather than looking for the cure to arrive externally via therapies or whatever. (And I had a lot of them!) This view assumes that there is no magic bullet worth waiting for.

So I started training for my Very Slow Olympics. I chose a regular time to get up. Everyday I went for a five minute walk, usually at the same time of day for routine’s sake. I would walk a few lamp posts, come back home and sleep for at least half an hour. That was my programme for about a year.

After a year my walks turned into ten minute walks. I’d walk five minutes to my friend’s house, visit him for a while, then walk home. It worked well. I had Chronic Fatigue, Doug had Chronic Study. He’d been studying for four years and showed no sign of speeding up, which was great for me. Eventually I was doing ten minutes in one hit. Sometimes I overdid it; one time I got all excited and decided to jog for several lamp posts. I jogged, walked, jogged some more. Felt wonderful. Came home and crashed for three entire weeks. Debbie was mad.

After we moved to Tauranga I graduated to 15 minute walks. These were slow walks, and I was regularly passed by little old ladies and it still felt like I was wearing concrete boots. But I remember all the milestones: the day I first walked part of the way up the steep hill on our road or the day I first walked all the way to the supermarket and back. By this time five minute walks were a piece of cake. That doesn’t mean it was easy to get out of the house. I would get passed by a runner or cyclist and remember thinking ‘it doesn’t look like it to anyone else, but I am doing much more serious training than them.’

That’s basically all I did: very slow incremental walks. There was a lot of pushing and shoving of boundaries as I tried to find the right balance. It was a terrifying process for Debbie because she had to trust me and allow me to make mistakes. It was a very slow process with gradual peaks and troughs. I spent a lot of time grappling with the question: at what point do I know that the condition is gone? If I have done no exercise for ages how do I tell whether I am still actually sick or merely chronically unfit?

The time eventually arrived when I got right around the Mount base track. It took an hour and a half with several stops along the way but I did it and was even okay afterwards. Once I knew I could do it on my own I tried to go once a week, which after a few months turned into three times a week. And so on from there. This was perhaps the most frightening time for Debbie because we were dabbling with hope, which can be the cruelest game if it goes wrong. And of course it did go wrong for the odd month or two at times because it is impossible to find the right balance without swinging to one side or the other, like tuning a guitar. Once I walked to the end of the boardwalk that started near our house and had to ask someone for a ride home.

The most triumphant moment was when I climbed to the top of the Mount. The first two climbs I didn’t tell anyone, not even Debbie. I felt like a superhero with a secret identity.

Other parts of life ran tandem to this as my health improved, for example, I took on three music students per week for six months, which gradually increased to two or three students per day. Then one week I covered for another teacher to the effect that I worked nearly 20 hours, and to my surprise I came out smiling. Little steps getting bigger over time. Time is the key, none of this happened quickly.

That’s the very fast story of my Very Slow Olympics. I wouldn’t presume to claim that this is what fixed me, or that it is the automatic fix for everyone. Perhaps it was just my time to get better, or perhaps the condition had already left which paved the way for me to increase my fitness. But I am convinced that without the very gradual exercise I wouldn’t have made anywhere near as much progress.

 

See also Exercise versus illness

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