I’ve been writing for about six years now and it all seems to have passed so fast. I started writing about a transition I was going through with my condition and I thought I would share this with people so they would become aware of Muscular Dystrophy; the condition I live with.
“One day I will need a wheelchair” I have always told people, because my legs and other muscles will begin to fail me. This is now happening in earnest, and that’s just fine. I was diagnosed with a life-limiting condition 22 years ago and had no expectations, I just knew that it was a huge fear of mine which brought on lots of anxiety, questions and self-doubt. What sort of husband, father, friend and employee would I become? If my body fails me, then how will it fail me? And yet nobody has the answers, so I’ve needed to write the script for myself the best way that I could.
We’ve taken on many challenges over the years to raise funds for research so others don’t have to have the same pain as we’ve endured; the falls, the weakness and the not knowing what the future holds. I truly believe that the money and awareness we have raised will help others and I am very glad and grateful for this.
About those challenges then… many of us have come together and taken on skydives, marathons, racing around Brands Hatch, swimming, LIVE music, organised a black and orange Ball, moved many miles and even moved mountains as well as many other events. What a team we have become and we started with one solitary mile.
This all comes from self-belief and trying to better myself and to help others believe the same about themselves too. It’s important to inspire others but not become anyone’s ‘Inspirational porn’. I’d like to think we’re all here to help but not to be poked and stared at, we’re just doing what we do because everything about it feels right.
Do you have some spare time? Get involved.
Are you fit and healthy in a position to help others? Get involved.
Got anything spare in the coffers you’d like to donate? Get Involved.
Do you have a large following and a voice on social media? Get Involved.
We’ve always been about being selfless, because it will cost you very little and the rewards are priceless and they usually end up on your lap without asking for anything.
My desire to be the best father, husband and friend has always been a passionate one. It’s important to me to be the best I can be, despite the challenges of my disability. My diagnosis is a horrible thing, but it’s what you do with the diagnosis that can define us and I always knew it would not be my weakness that defines who I am but my strengths, which is massively ironic.
Someone told me that I have a muscle-wasting disease so I became stronger and decided to fight it and, as I have mentioned, I took a lot of you with me on this journey because we can all do better than what we think we can. I remember climbing Mount Snowdon with family and friends and I took long breaks for air and water and I looked around and saw my girls, and thought that I don’t want my children to follow in my footsteps, I want them to take the path next to me and go further than I could have ever dreamt possible.
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| Gathering composure on Snowdon |
All of us have a responsibility to be the best we can be and let others see that and see if they can better what we do and who we are, and ultimately leave a lasting legacy. I’m glad we have pushed
ourselves to the edge, but now I have to reflect and think more about my care, because my mobility is getting worse.
2019 will be the year that I need to use a wheelchair and that’s absolutely fine, I’ve been in this transition period for a while now and it’s time to bite the bullet. Wheelchairs are expensive, so this is why I am raising funds for my own chair as well as research to find treatments for others. Don’t think for one minute that I’m here for your pity, I am not. I have had some great years on these legs of mine and will be going out with a bang. I will be taking on challenges this year to raise these funds and when my chair is paid for then I will continue to raise funds for others.
In 2018 I pretty much became a prisoner in my own home as this was not fit for purpose anymore, my life consisted of a life downstairs, living on my own sofa and feeling trapped. House sales have fallen through time and time again and this has also put a financial burden over my head, which also resulted in mental health issues coming to the fore. Again, I do not want pity, what I do want is change for others. I am so lucky to have family and friends around me that can help, but imagine if you were in my situation and didn’t have that support network? It doesn’t bear thinking about. This is why I think it’s important to look out for those around us that may be trapped in their own homes too.
I have a little list of challenges in 2019 and this list Is slowly getting bigger, as is the ‘Hywood’s Heroes’ team; a bunch of selfless people that are helping me to help others. On Sunday 10th February I will be walking an assisted mile with family and friends at the famous Iffley Road track in Oxford. This will launch the National ‘Move a Mile for Muscles’ campaign for Muscular Dystrophy UK (MD UK), of which I am the very proud ambassador. I certainly won’t be breaking any 4-minute mile records but I will be showing you that anything is possible if we put our minds to it.
22 years ago I was bitter. I thought that I didn’t deserve this disease, and I thought ‘why me?’ Now I think that this could have been a blessing and I should be grateful with all that I have. I live my life with a smile as much as possible, I never take anything for granted and I try my best to be selfless, as I like others to be.
Sometimes the only person that can help us is ourselves. It is too easy to look to others when really we should take an introspective look at what we’ve got. We all have the strength to make the sun shine, on us and our loved ones. So make sure you use it.
MD UK Family Fund - https://www.musculardystrophyuk.org/get-involved/family-funds/funds/hywoods-heroes/
Just Giving - https://www.justgiving.com/campaign/hywoodsheroes
#HywoodsHeroes
#MusclesMatter
