How I ran a marathon, despite my disabilities, and why I’m running another…

“Great things never came from comfort zones” — Edinburgh Marathon 2018 Finisher’s Medal

Last weekend I did something I never thought I would. I ran a marathon. I even enjoyed it.

Yes, I know that they can be bad for your knees. Yes, everyone and their dog has already run an ultra. And yes I know it’s not likely to ‘bring about world peace for all children’ (despite the promise on one lad’s t-shirt). But in its own small way it was my Everest — once something I would have scoffed at, now a proud personal achievement more than 5 years in the making.

On one level I did it because the rebellious teenager in me didn’t like it when I was told that people with AS shouldn’t do this. On another level I did it because I’m the oldest of 5 children who’ve all won the same grim prize in the great DNA raffle — and it broke my heart to watch my younger siblings suffer. And whilst I’m not as proud to admit this, I also did it partly because it felt great to try to run away from my problems — including the terrifying monster that is an incurable chronic disease...

Having now run over 1000 miles I’m going to have to admit something though. Despite finishing my marathon at a pretty decent pace (3hr45), I haven’t gained a single meter on that scary monster — AS. But something else that I didn’t quite anticipate has started to happen. The monster has begun to become my friend.

My story isn’t a unique one, there are around 15 million people in the UK facing lifelong chronic illness. For all our supposed progress that number continues to rise every year. And I’m just one of many who have taken our fate into our own hands and tried do something about it. But there’s something I want to reflect on: the story of the single hero.

Since completing the race I’ve been overwhelmed with heartfelt messages — thanking me for inspiration, asking me for advice, celebrating my resilience. I won’t deny that I’ve enjoyed the kudos, and I actually love trying to help others thrive. But I am no hero. In fact, I’m not sure that there is any single hero in this story.

As a ex-theatre director I’m pretty familiar with the classic hero tale: all of a sudden your life is turned upside down. You’re forced to embark on some sort of a quest. Eventually, you’ll triumph over adversity with your abundant human spirit, monumental will power, and possibly even a small smattering of divine assistance…

I don’t mean to sound ungrateful. Running a marathon frankly takes anyone outside of their comfort zone — even those ultra runners. And trying to reconcile myself with a chronic disease has been bloody hard work too. But the truth of what’s happened is so much more than the story of the single hero admits.

For me, there is a dismissive father, a narrow minded ex-Doctor, a handful of more cynical AS sufferers I’ve met along the way —every one of these awoke that rebellious teenager inside me. There are friends who’ve cheered loudly when I was lacking in conviction. There’s those 4 younger siblings who seemed to ignore my words and left me desperate to set an example. Several pioneering physicians and some persevering patients who have refused to settle for the simple formula of prescription drugs or helplessness.

So I’ve never actually been just one man ‘raging, raging against the dying light’. There are in fact a whole cast of characters. There are multiple connections, unexpected contributions and the power of supportive community. But to stop the story here would still be incomplete — all these others are not a mere chorus to my solo.

The actual truth is that the kindness of others, especially women like my wife and mother, encouraged me to find more kindness within myself. Faced with their own fine examples, I had to admit I was miles off the mark when it came to gratitude, compassion, love — especially towards myself.

The actual truth is that there are countless storylines in which I’ve had the privilege to be a player — peace marching from London to Italy when I was just 6 months old, winning an assisted place to a boarding school that nurtured self belief, working with remarkable human rights defenders around the world who I’ve watched persevere despite the unimaginable. I’ve been gifted with a whole series of valuable lessons that I did very little to instigate.

The actual truth is that I’ve had some extraordinary teachers. Most recently in the domains of leadership and meditation, where I’ve begun to learn to look honestly at my own brain, heart and body. To let go of an attachment to outcomes and instead face what is. And to try to move beyond hope and fear.

Fear is the cheapest room in the house.

I would like to see you living

In better conditions

- Hafiz

And then there’s the truth of my disease itself — in actual fact my greatest teacher. At first an unwelcome guest in my body. I fought it violently. I struggled to ignore it. I tried passionately to expel it and demand divorce. Exhausting. Futile. Because the AS is still here in the small home that is my body. So I switched to respect. I’ve learned to try to see it as a dancing partner — and a loyal one at that! As I hit mile 10 of my marathon on Sunday and felt a familiar twinge shoot down my spine, for once I didn’t frown with frustration but instead found myself thinking ‘hello old friend’.

As I’ve said before, this story isn’t really about me. Now that I’ve crossed the finish line I want to amplify just how unhelpful I think the story of the single hero can be. I want to further explore our culture’s relationship with the taboos of illness and disease. And I want to ask if living in my failing body can teach me something valuable about how to handle the wider challenges I see across our society?

So I’ve signed up for another marathon that starts next month. It’s called #PowerLab and it doesn’t actually involve any running at all — unless you want it to… But it draws on some of the best elements of real marathon training: a supportive community, a commitment to going beyond our comfort zones, a learning experience that can fit in and around life and work.

“Multiply by twelve the resources, knowledge, experience and encouragement you would have by yourself.” — Clemence Tanzi, 2016 Enrol Yourself participant

Because of everything above, I’m truly excited about an opportunity to build some new learning relationships that might enable me and 11 other participants to get a little closer to unleashing our full potential. As per the African proverb: “if you want to go fast go alone, if you want to go far go together”.

Come check it out, I certainly can’t do this alone! www.enrolyourself.com/london-power-lab