Sometimes I can't help but feel helpless

Long time no see.

The last time I wrote a blog was December 2022, and a lot has changed since then so I thought I would get back to it. When I first started writing it was to express what it was like to go to a football match and share that experience from an ambulant, disabled perspective and lots of people liked it, it gained me so much support and raised so much awareness for people like myself living with Muscular Dystrophy, muscle wasting and muscle weakening conditions. I am so lucky to have made so many friends over that time, and many reached out to help and raise funds and awareness too.

As a group of family and friends we have gone on to raise in excess of £300,000 and that is something we are extremely proud of.

I have been reading lots and listening to music as I always have done but as I get older my appreciation for this and life itself grows. It is not a secret that I live with a degenerative, life limiting condition and all of this has given me so much gratitude and appreciation for life, more so than others, I think. When you receive a diagnosis with a hazy prognosis you have a tendency to not take anything for granted and to enjoy all that you can do whilst you’re still clutching at it because all of this is so precious and so very short lived, I am 52 years old, I feel like I’m 92 years old and wish I was 22 years old.

I do my best. I have the perfect job to help myself and others, I am a natural fundraiser and I am motivated by that every day but never quite feel fulfilled, it’s as if all that I do is never enough for me because we still have no cure for this and all of my successes fill me with imposter syndrome, as if I haven’t done this and others would have done it regardless of my efforts but I am reassured by my wonderful wife and girls that I do go beyond others expectations and I should know that and appreciate that too but it’s like putting a medal on your own chest or around your own neck and it doesn’t feel right to me but even at my age I’m learning, learning about life and learning about myself, confidence comes from the willingness to try and I believe I’m constantly trying. If I’m a better person tomorrow than I am today and today I’m better than I was yesterday, then I’m on my way and I’m improving.

As for fundraising, we are still doing it, and we are not stopping any time soon. We have runners at events this year, we have a sponsored head shave, a pub quiz and we have plans for another comedy night at the Waterside Theatre, Aylesbury and this leads me nicely to talking about selfless people, the kind of people that have no association with these conditions apart from knowing me, they could easily raise funds for many different causes but they choose me and for this I will be forever grateful.

Since we started fundraising it was always about others, it was always to be selfless. It is a trait I look out for in people in the way they conduct themselves and the things they say. Selflessness lights up the soul, and it shows that others put humanity before self-interest and usually it doesn’t cost anything at all, it is free at the point of exchange, the best currency we could possibly trade with, and it fills my heart up.

I am very much in the Muscular Dystrophy community, I am all in. I live with the condition, my brother also my hero lives with the condition, I know children of friends living with the conditions and it is utterly heartbreaking and I work at Muscular dystrophy UK, the charity dedicated to supporting over 110,000 children and adults living with over 60 muscle wasting conditions like mine.

We started fundraising because of children receiving a diagnosis, knowing how hard it was for myself and my wife to deal with my diagnosis, we could not imagine having a child and being in that situation, so we started with one Just Giving page. Due to age and progression of the condition it now hits home hard as we see it with our own eyes and sometimes change happens overnight, one day you can lift your cup of tea to your mouth and the next you cannot, it can change that quickly. As I mentioned above, my older brother was also diagnosed on the same day as me but is two years older so we see what the road ahead looks like and also as mentioned, he is my hero. My brother would look out for me when we were teenagers, unfashionably he would invite me on long bike rides with his older pals much to their disagreement, he would make mix tapes for me, a priceless catalogue of education beyond the usual curriculum, a brain embedded with anything from Abba to Zappa, a plethora of emotions all laid out for me to pick from the jukebox in my brain. Let it be known we fundraise for everyone; we fundraise for our family, we fundraise for those that get diagnosed, we fundraise for those beside that person at that appointment, we fundraise for partners, sons, daughters, mums, dads and we fundraise in memory of others too.

Sometimes I can’t help but feel helpless. As hard as I try, I am affected by my physical disability and at times I find the physical side is manageable but mentally it’s so much harder. The weight of the world is flung over my already depleted, muscleless shoulders. Like everyone, I have the burden of a cost-of-living crisis as well as the cost of being disabled. Being disabled is exorbitantly expensive, I need to be kept warm, I need to make sure all my equipment is charged and ready to go because my wheelchair is my legs, is my independence, is my life. As helpless as this sounds and as pessimistic as this writing is you can still always count on me to try, and you can always count on me to be the optimist and to believe that hope is the answer because if we don’t have hope then we have nothing at all.

I would like to leave with a story I heard about a man, a friend.

On a recent Monday morning in March a man woke up. He stretched and welcomed the day, but the day didn’t welcome him, and he stumbled and fell to the floor, alone. Unable to gather any strength or momentum he was stuck on the dining room floor segregated from the world, isolated and exhausted at the very start of the day. His family had left and they had gone about their day, his phone was out of reach, his door was locked and his heating was off as he got colder and colder. Tears flowed from his cheeks, and he felt the warmth from them because that’s the warmest thing he knew in that moment. He once stood tall and with power beyond anything he recognised now as he contemplated what the future held for him with the cold floor as company. Eventually he did gather the ability to move once more as determination overcame every other overriding emotion and from somewhere he had enough, just enough, to move a blanket close by, a symbol of warmth and solace when he had nothing at all. Hours passed until he was helped and days after that until he moved once more and a week until he felt normality after thinking that could have been it.

The man who woke in March was me.

As is always the case I will always try my best to be the best version of me to show others, I need to lead by example for my girls to show them whatever life throws at you, we can always do our best to overcome it and sometimes we come round full circle. Now I am in a similar place to where I was upon receiving my diagnosis 25 years ago, I often ask, “why me” and then within a few minutes I’m stating “why not me” to receive the diagnosis that I have.

Then, like now, sometimes in the dark places it feels like you’ve been buried psychologically but I know now that I have not been buried at all but I have been planted, this is always where I was supposed to be, to raise this awareness, to share these experiences and to raise those much-needed funds for our charity.

With our help that man may not have fallen in his home due to equipment, grab rails etc being in place, if he did fall he may have been helped up by a rising cushion, he may have been funded a wheelchair in his home so there was no risk of a fall in the first place, he might have an alarm around his neck or a smart watch on his wrist to call for help and a smart watch could of also turned his heating on.

If you’re reading this and you are relatively healthy then you are one of the luckiest on earth because health is the real wealth and life is beautiful and should be enjoyed. I never did take anything for granted but now, after March, I feel it even more than ever and grasp every moment. Despite life’s hardships always remember it goes the other way too and we are here for a very short while but whilst we’re here, we should make it as good as can be and help others less fortunate than ourselves whenever that opportunity presents itself.

One Love

#MusclesMatter

In Sickness and Health, truly