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A Quest to Make the Invisible, Visible

Invisible
How do you make visible something that’s invisible?

You could do the old trick of throwing paint or sand over it. Yep, that one works. Or look to see if it casts a shadow. Or if leaves footprints in the snow. Or get some of those cool night vision goggle things.

It’s actually pretty easy, as long as it’s a physical thing that has mass and shape.

But if it’s not a physical object, it’s a whole other deal.

CFS/ME is one of those illness’s that remains invisible. Only a few – numbering over 250,000 in the UK and over 1,000,000 in the USA – know all too well that it exists.

I’ve written before about how much CFS/ME means to me and how I want to do something to help others with the illness.

That time has come

So I’m planning on walking a marathon on June 9th.

Now, I know what you’re thinking.

Steve, people run marathons all the time. You’re just walking a marathon. What’s the deal?”

The deal is this.

There are times when walking 100 metres puts me out of action for days. There are stretches of time (days, weeks) when I need to concentrate with every step so that I don’t fall over. There are times when any kind of movement hurts so much that I want to throw up.

So please believe me when I say that walking a marathon – a friggin’ marathon – is just about the biggest challenge I can imagine.

I want to take this on for 3 reasons.

  1. I’m so fucking lucky to be able to get around and take care of myself. There are forgotten people with this illness who are bed-ridden, entirely dependent on others with no quality of life. This illness even kills people. I have a duty to do something.
  2. I want to raise funds to help people with the illness and to support research into it. Right now, there’s virtually no research into the cause of this chronic illness, let alone into treatment or a cure.
  3. I want to make the invisible visible. There’s a huge amount of work to be done to have people see what this illness does and how it destroys lives. I don’t need you to care and I don’t need you to understand; all I ask is that you see.

Honestly, I have no idea what my body is capable of supporting. I have no idea if I’m physically capable of walking a marathon.

Handing me my butt…

I’ve been training, and I can tell you that CFS/ME has already kicked my butt and handed it to me on a silver platter on a number of occasions. Over the last 6 weeks particularly, I’ve asked myself whether I should give this thing up and just pretend like I’d never decided to do it.

But I’ve known all along that this is not simply going to be tough; it’s going to challenge everything I’ve got and everything I’ve learned.

And while I have zero interest in being a martyr or doing myself lasting damage, I have abundant interest in putting a dent in this thing.

My vision for this is that hundreds of people take part, both with me in person on June 9th and right around the world; individuals and groups walking and running any distance to help raise funds and awareness, all under the banner RunforME.

Thinking bigger, I want all those miles that are walked and run to add up into a giant total. Then, when we get to 10,000 miles for example, a sponsor like Nike contribute $100,000 to the fund.

This kind of money could totally change things.

Step by step…

I wish I could tell you that this will happen as I want it to. But I honestly don’t know what’s going to happen.

I’m figuring this thing out step by step (literally), and my next step is to see whether my walk in June is a beta test to see how and if it can happen, or if it can be big enough to invite people from all around the world (people like you) to walk or run any distance to help support the cause.

I can’t do this alone

Which is difficult for me to say, given how fervently independent I am.

Here’s how you might be able to help.

  1. Stay up to date with my training and further developments at www.runfor.me, and share anything there that strikes a chord.
  2. Click here to tweet about my quest to make the invisible, visible
  3. Go ahead and share this post using the sharing buttons at the top.
  4. Add a comment or drop me a line if you think you might be be able to help, are interested in walking or running any distance on June 9th, or perhaps even to join me in London on the day. Plans are still forming, so I won’t hold you to anything!

This ain’t gonna be easy.

I hope you’ll stay with me to see what happens.

Comments

  1. In 1997 I injured my right knee and had to have surgery. Afterwards, the surgeon gave me a list of things I should probably never do again. Running and dancing were on that list. I was 33. Everything in me rebelled at that list and his certainty about what possible. 11 months later I ran a half marathon – something I’d never imagined in my wildest dreams. Your post and commitment reminded me of that year and what it took, and the thing that stands out the most in my memory is that I could never have done it alone.

    Thanks for inspiring and letting us in on your dream.

    • Steve Errey says:

      Great story Sandi – I love that you didn’t let him tell you what you could and couldn’t do :)

      Really appreciate your words.

  2. A very admirable goal Steve! I didn’t know it was so serious until I read your post. Training is a good idea. I’m interested in staying up to date with your progress and to hear your take on how much different you feel after all the training and the marathon. I don’t know if you will feel better or worse, but I’m interested to find out either way.

  3. Very inspiring Steve! We’re rooting for you!

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