January 2006 involved a lot of reflection for me.

As the disease twitched its way slowly down my body, I began an emotional roller-coaster ride of emotions.

I am living with something that will ultimately weaken the body to the extent that it will die.

Death is the only thing we are all certain of in life, the only thing we do not know is when.

I began the process of reflection in sadness over the situation and its effect on everyone closest to me.

Watching the boys growing into fine men would challenge the fundamental make-up of my psyche.

Being a father and coach meant I had been involved more closely in their development. Now, I had to help them without physically showing them anymore.

My mother, the one who made me the person I am, and I always talked openly and honestly.

The most important person was my beautiful wife, Sue.

Love sent a shiver coursing through my body whenever Sue was in the room. Holding Sue I got a tsunami-sized wave of emotion crashing through me.

My body, which I once used to comfort and hold Sue and keep her safe, had become a thing that hurt her.

How I missed holding my beautiful wife in my embrace, feeling the softness of her skin, the smell of her hair as I held her close.

I wished sometimes the pain of death had been swift for my family, like dying suddenly, rather than feeling a burden.

In several of the down times, as I lay next to Sue being just able to roll on my side I did feel like rolling face down and ending life.

Thankfully, the highs in life sent thoughts like this away never to return.

I was confused at times over where and what my life expectancy would be.

Assistant coaching at Hull Wyke rugby league had become difficult. The young players were patient as I showed angles of run with my wheelchair.

The year had incredibly funny moments and the love shown by my wife and boys was unbelievable, knowing I could not return it.

Jill Hewson entered our personal life after we made friends with her when picking our respective children up from school.

Jill had been a carer in residential homes for many years, so her offer to help look after me while Sue was at work was taken with thanks and some trepidation.

That first day was funny.

I have been naked in front of female physiotherapists at rugby, so I wasn’t embarrassed showering in front of Jill.

Having my privates washed did not bother me, what was odd was having my bum wiped.

No one can do these things better than yourself, I knew it would take time.

Most days I would sit watching the television and everyone elses problems on so-called morning entertainment. Or, normally, I watched recorded rugby.

My boys helped me everywhere we went.

Once there, Hullensians supporters would take me to the pitch in my manual chair over muddy grass areas, positioning me at the corner flag, never making me feel disabled and a burden.

The care shown was overwhelming.

A typical day for me at this time saw me get up at 7am.

I was helped to stand out of bed and walk slowly to the bathroom for a shower.

Getting dressed sitting on the bed, I had enough strength not to fall back, but pulling my socks on meant lifting the feet and over I went.

Negotiating stairs was much safer having the stairlift. I was able to activate it with my right middle finger that had become permanently clawed, I just used the rigidness as a hook.

Disabled is not how I saw myself, I was less able and would concentrate on being this way.

Often, I would be asked why I didn’t feel angry about my life expectancy, but the thing I wanted to do was move forward.

Who should I blame? Notice I don’t like to say I am a sufferer. I believe the respect people show me is because I want to live and that is reinforcing my life and expectancy.

My sister Sharon told me every time she does something that’s tough, she thinks about my situation.

I think my difficulty with disability is nothing compared with people that struggle alone to get through each day, maybe fearing today could be their last.

I am in no pain and there are many who are suffering a lot of pain with their illness. Families have to see loved ones suffer, unable to comfort or take away pain.

This is why I don’t believe in feeling anything, but positive attitude. Maybe I do make fun of my situation, but that’s how I’ve coped.

The doctor thought I wasn’t able to inhale and exhale sufficiently well enough and mentioned to me using non-invasive breathing assistance.

It helped take air in and out, ensuring a good lung full of air that the body needs.

I also had a feeding tube, or PEG, fitted as my swallowing had started to become difficult, especially while swallowing chunkier food.

I was still enjoying my food and I was assured the PEG was precautionary.

I knew it would be better having the procedure done early, but it was hard for me in there.

That night, my sister Sharon saw me sat there with this tube sticking out and cried. I must have looked like an inflatable Simon Smith with the stomach valve.

The next day a doctor examined my PEG. He mentioned feeding through it and I remember the look on his face as I told him that I would decide when it was going to be used, thank you.

As it stands, almost a year on, I only have fluid through it.

A physio brought a standing frame to try, it’s like a tall Zimmer frame having four wheels and armrests rather than handgrips.

It was great to walk and I surprised myself how far I went.

It gave me a lift afterfeeling down. I had plenty of visitors and the nurses bought me a birthday cake.

Sue brought some presents in, which cheered me up.

Having time to think in hospital made the decision in canceling my return to work seem the right one.

I would need a lot of help attending, let alone doing a worthwhile role.

BAE Systems and Julia in occupational health had been busy trying to get me working, I wanted it too. But how was I going to work? At home, I had been unable to control anything that was remote controlled and without use of my arms I couldn’t answer or use the phone.

I felt isolated, like a forced hermit, unable to interact with the world.

I was sitting down all day standing only to wee in a bottle, not even walking through to the kitchen for lunch, preferring to conserve energy for having dinner with Sue and the kids at the table.

Since having to physically stop coaching youngsters, I felt isolated.

You want to give something back to sport, encouraging my boys and their team-mates that sport is more than just about winning.

I, hopefully, would be able to pass on the experience and knowledge that I have had with the clubs and team-mates throughout my life.

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