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Ed meets the challenge of his life

"Multiple Sclerosis is a crippling condition which attacks the nervous system - it is a disease.

Laughter. For me that means everything I value is difficult... I love to walk, to ride a bike, and most of all to play with my two boys.

It's been twelve years since my legs stopped working... the M.S. dragged me down... a life of walking far and wide dissolved into a painful mess.

My children know me as quite slow... that hurts. The M.S. challenge offered me a chance to sail as how I've wanted to for years.

I've played with dinghies now and again but this was deep sea... proper. That week on board the 'Tonic' was the best week I have spent since childhood.

"This is Ed from planet Zorro..."

"Hello, I'm Ed"

To be thrown into a small space with five total strangers, four of us with M.S... and then to navigate 275 miles in a boat we didn't know would be daunting for any normal person but happily the group gelled from day one.

"We understand each other... if somebody cannot do something, we laugh!"

In the course of that week I laughed, cried - more than I have done for years. The relief was fantastic... we learned to share our common experiences which is so hard for others to understand.

When I think of our celebrations in Rick Stein's restaurant I know that although we are as wobbly and weak as ever... together we are kings of the sea."

Sound - wind

Please tell us about yourself?
I am a 48yr old crippled single parent and I have lived near Carmarthen for the last twenty years. I run my own business - renting property. Yeah, Ok, so I'm a landlord - someone's got to do it!
I grew up in Herefordshire and I led an active life - walking by the rivers, cycling everywhere and walking over as many mountains as I could get to. Then I moved to the Midlands to take a degree, worked there for a brief while and then off to Wales for an easy life! I have done more here than I could ever have hoped to do in the city.

When did you discover you had MS?
MS reared its ugly head in 1991 and it's nearly stopped me climbing mountains. Basically I can do most things I used to, but very slowly and with no trace of balance. I hate the disease and I am not going to stop my life because it's a bit tricky at times, that's how my life has always been.
My two sons are a never ending source of wonder and concern. They are men now, 19 and 20, but they will always be my little boys. When they win their Nobel prizes I'll remind them of that in my acceptance speech!

What's your story about?
I condensed the sense of enablement I and my three shipmates found after 5 days sailing with the MS Challenge. I wanted to illustrate the sheer joy, fun and power we all felt at the end of the voyage. What was so special is that no one talked about MS, we didn't need to. For once we were a bunch of free spirits alone at sea and our thoughts were only of the weather, mugs of tea and where we were going. People with elaborate drug regimes abandoned them on day two and just got on with sailing the boat - fantastic.

How did you find the workshop experience?
The idea of Digital Storytelling appealed to me greatly. I love picture editing and computers but what was I going to say? I have a stack of anecdotes but with very few photos to back them up. The MS Challenge trip was fully documented in 2 minutes!
The crew steered us gently through the whole process. By the end, our rather reluctant group had swelled to a very busy media machine in full production. I am proud to have been able to tell my story and now I can tell it to the rest of the WORLD.

Your comments

"It is so moving to see that even though you have multiple sclerosis you don't let it run your life. That you do what you wanted to do and you accomplish your dreams. That whole sailing thing looked like a lot of fun, I love to sail but I only do it at my cottage. It would be so cool to actually go out on the ocean and sail." Jon Benoit, Ontario, Canada.

"My youth, my mistakes, Eds luck, Eds love of my mam's Welsh cakes!! This is a man of incredible "something". His Tepi is a place of peace and tranquility and an appropriate place to unburn those miniscule woes we have." John Smith, Northampton.

"A superb story gives us all the encouragement to fight on against MS. Well Done Ed." R Stapley, Gravesend, Kent, UK.