‘Simply making a cup of tea can leave me pouring with sweat’
Despite the ordeals of motor neurone disease, ex-rugby player Doddie Weir is determined to enjoy his ‘living wake’
One of the great mysteries of motor neurone disease is why it acts so quickly in some and relatively slowly in others. Since I was diagnosed in 2016, I have heard of so many good people passing within a few months of their own diagnosis. Why am I here and they are not?
No one can answer that. There was a gentleman in Northumberland whom I had lunch with not that long ago. Last week I received an e-mail from his son with his funeral arrangements. That hit me quite hard. MND has taken another good one away. At the same time, it gave me an extra appreciation that I am still around, still functioning, still doing stupid things like taking the kids’ two-wheel-drive quad bike to feed the sheep.
It also gave me renewed determination to make the most of the extra time that I have been given, to spend it with my family, to raise as much money as I can to find a cure to MND, and to enjoy as many nights out as possible.
The deterioration in my condition has been gradual. It is not like you wake up one day and you can no longer use your hands. Say, you have about 10 muscles in your arms and shoulders, I probably have three or four active muscles. That means they have to work three or four times as hard.
Something as simple as making myself a cup of tea takes a lot of energy and can leave me pouring with sweat. With fewer muscles in your arm you have to work really hard just to lift the cup and put the sugar in. I am a stubborn sort so I try to do most things by myself, although I may need a helping hand from the good lady in putting certain clothes on.
The worst thing is when I see my kids throwing a rugby ball outside and knowing that I cannot really join in. The other activity I really miss is calving the cows. We have had cows on our farm for about 10 years and I have been calving for 25 years before that on my dad’s farm. We ended up selling the herd in March, which was a real wrench, but we still have sheep.
Like with the kids, I just have to take up a different role on the farm. I can observe and direct rather than doing everything myself. I would imagine it is rather like going from playing to coaching: you do not get quite the same thrill but you are as close as possible to the action.
Even though I count myself as lucky to still have as much independence as I do, I have to recognise that my life is changing. In December, I made another very difficult decision, to leave my job. While a job with a sewage company may not rank among the most glamorous, I loved it and the challenges it brought. I could have continued but we made the decision to cash in my shares with the company, which just gives us that extra bit of financial security.
We have put some of that money towards redesigning the house and adding a bathroom downstairs. It is an amazing project led by my mate Gary Armstrong and his brother Kevin. They have taken what was a steel storage container and transformed it into this all-singing, all-dancing bathroom especially designed for a big lummox like me. There is an automatic air dryer and I can operate most things just using my elbows. We have had the walls and ceiling reinforced in case we need lifts and hoists in the future. At the same time, it can detach from the house, so when I am no longer here, it can be taken to someone else who needs it, as a legacy project.
As painful as it is, you do have to consider the implications of what happens further down the line. Life is not going to be pleasant. That is why I want to stay as fresh and as independent as I can for as long as I can. If that means ignoring certain medical advice, then so be it. I have fallen out with one of my doctors because he wants me to have an operation where a feeding tube called a PEG is inserted into my stomach.My view is that once you give in to something like that, you are giving in to MND. It is like having bad eyes and you start wearing glasses. Once you do that, very seldom do you go back to having good eyes. You have to continuously wear glasses. Maybe that will affect me in the long run, but I think quality of life is even more important than quantity.That is why I am trying to make the most of every moment that I have. Essentially, I am enjoying a living wake. My eldest son and I were over in Hong Kong for the rugby sevens which was a fabulous experience. He was meant to be there as my carer but I think the roles reversed as drink was taken. We got to meet Billy Connolly, which was a huge personal thrill.
From Hong Kong, we went to another fabulous party town, Newcastle, last weekend for the Champions Cup final. What a place, what a night. That is what I keep reminding myself: that without MND I would not have had all these amazing experiences. For all the misery it has caused, it has also brought out so much kindness and generosity from the people I know and thousands more that I do not. To date, my foundation has invested £2.4m into MND research projects across the UK, with further awards in the pipeline. The fight continues.
– © Telegraph Media Group Limited (2019)