“Dis...aaaaabbblleed,” Nigel Holland said out loud, elongating the last two syllables and putting on an artificially sympathetic voice.
Nigel hates when people say that word in that way.
Technically, he and his 10-year-old daughter Ellie are disabled. They have Charcot-Marie-Tooth, an inherited disease that means the nerves don’t tell the muscles what to do. But that does not mean they can be written-off from doing exciting things.
It was a little over a year ago when Wellingborough web developer Nigel Holland set out to prove to his daughter that anything is possible.
With his 50th birthday looming, he set himself the challenge of completing 50 tasks before he reached this milestone age.
And the story has now been told in book form as Nigel today publishes The 50 List: A father’s heartfelt message to his daughter.
Nigel said: “It was October 2011 when someone said to me, you are going to be 50 next year. I thought ‘I don’t mind getting old but I refuse to grow up’. I thought ‘I have to celebrate the 50th and decided to do 50 things to mark it’. I thought that would be a great way to inspire Ellie.”
Nigel, who is married to Lisa and also father to 13-year-old Amy and 15-year-old Matthew, said: “I was the first one in my family to have this condition, it was like a mutant gene and there was always the chance I could pass it on to one of my children. I was diagnosed at four years old.
“The nerves aren’t telling the muscles what to do and that results in weakness of the muscles in the extremities. In my case it affects my legs and below my knees I can’t move anything. It doesn’t affect my shoulders and chest muscles. My throat sounds like I have a bad cold, but only one of my vocal cords works.
“I hate the term disabled, especially when people say the second syllable in a sympathetic way. I like to think everyone has a disability in different forms. Mine is a wheelchair, my wife has to wear glasses. It is all about attitude.”
The challenges on The 50 List range from the everyday to the extraordinary, including such tasks as learning to make a creme brulee, and visiting the capital cities of Northern Ireland, Wales and Scotland, to indoor skydiving, dragster racing at Santa Pod, driving at Rockingham Race Circuit, hot air ballooning, zorbing, indoor skiing and completing a 1,000-piece jigsaw puzzle.
Nigel, who is also a press photographer at Santa Pod, said: “Ellie wouldn’t want to get into a dragster like I did, but I’m an adrenalin junkie. When people hear you are a wheelchair user and an adrenalin junkie, they can’t see the two going together. I love excitement but Ellie is not me and I do not expect any of my children to do the things I have done. But what I hope is that they will seize every opportunity that comes their way.”
Nigel explained: “Making a creme brulee, that is one of the best desserts you can eat and that was one of the things I wanted to do, but there are things on the list for everyone, things I wanted to do, things I wanted to try again.”
Out of all the items on his list, indoor skydiving in Milton Keynes was Nigel’s favourite. “It was liberating, it was just the air keeping me up and it was an experience.”
But, bearing in mind the physical nature of some challenges, how easy was the act of arranging the 50 tasks? Nigel said: “With some of the physical things I would have expected to hear the words ‘I’m not sure you will cope with that,’ but I did not come across any discrimination.
“The only problem I had was when I went to give blood as they wanted a letter from my doctor. I had a needle phobia and wanted to get rid of that. They did not want to take the blood from me so I scratched that one out and replaced it with wood turning.”
The book itself also ticks one of Nigel’s 50 challenge boxes. Nigel is happy to have achieved most of the tasks on the agenda and is impressed his daughter Ellie now wants to put together an ‘11 List’ of things she wants to do before her 11th birthday.
He said: “I hope it does inspire more people as life is too short, you only get one go at it so you need to make the best of it. Too many people just sit around thinking about things and what is the point? There is too much arguing, too many wars and battles. Life has to be enjoyed and appreciated.”
Extract from Nigel’s 50 List
1. Do an indoor skydive.
2. Go powerboarding.
3. Take a 4x4 off road.
4. Play the drums.
5. Teach someone to balance on two wheels in a wheelchair.
6. Take part in a half marathon.
7. Make a creme brulee.
8. Be a member of the audience for Top Gear.
9. Take part in the Waendel Walk.
10. Race a Volvo S60 around the Rockingham Race Circuit.
11. Pay a visit to London’s famous Ace Cafe.
12. Sell the Mustang.
13. Encourage someone else with a disability to do one of my extreme 50 List.
14. Swim in the sea after a gap of 30 years.
15. Go scuba diving.
Nigel’s adrenalin junkie side definitely comes out in one passage in his book in which he talks about his day spent driving a Volvo S60.
He wrote: “Being a motor racing fanatic, I could sit and watch most types of motorsport till there’s a winner, however long that takes, but I would always much rather take part.
“So when there was an opportunity to add driving a race car round a circuit to my list of challenges, I obviously jumped at the chance.
“Today was that day, and what a day it’s been! I am buzzing as I write this, and it’s not because I’m parked up close to the washing machine when it’s on a spin cycle. It’s because when I’m driving round a race circuit, I feel so alive.
“Best of all, I was able to forget all about my ‘disability,’ as the car I was lucky enough to drive, a Volvo S60 – courtesy of a great guy called Steve Collett – is one that can be adapted to suit the individual driver.
“In my case, this meant I could brake using the hand controls – something that made driving a great deal easier.
“I couldn’t race anyone else (this was a track day and as that meant members of the public would be involved, it has to be time trials only) but that didn’t mean I couldn’t race myself. In fact, in some ways, that was an even greater thrill because I was racing my own mind, fine-tuning my technique around the corners, improving both the entry and the exit, so that with each successive lap I could shave seconds off my time. And I like to think I did OK; that if I were racing another driver, I’d hold my own. With a little more practice, at any rate. Definitely doing it again.” For a video of the challenges, see www.northantstelegraph.co.uk.