At the age of 23 my life changed. In the time it took to deliver a diagnosis my world was shaken up like a snow globe. I’m going to ask you now to spend that same amount of time just to read this blog, and I hope it will go some way to changing the lives of many, many people.
Some people reading this will already know my story but for
those that don't, here it is...
All my life I wanted to fix things and I loved motor vehicle
engineering, motorsport and everything to do with cars. I was living my dream
working on old fast Fords and other classic cars until one day I slipped in the
workshop and I couldn't get back up. I had dislocated my knee and my leg was
trapped under the car lift. After months of physio and hydrotherapy my doctor
noticed that it wasn't healing like it should, I wasn't moving my legs as
expected either and he referred me to a specialist at the John Radcliffe hospital,
Oxford. During that visit to Oxford I discovered my life would never be the
same again. At 23 years old I was diagnosed with a life-limiting,
muscle-wasting condition called muscular dystrophy.
With my head spinning and in an emotional maelstrom, I went
back to my own GP for the straight-talking truth. He said I would never be able
to lift another wheel in order to earn a living, but also, that I wouldn’t need
to. I could stop right there and then and receive social security forever. I
was lost. I was sad, angry and scared. After eight years of doing what I loved
I would have to give it all up; the dreams I had as a child were gone.
As a person, and as a Dad, I’ve always felt my behaviour is
infectious. I felt like giving up, and it would be easy to claim benefits for
the rest of my life. If I quit working and gave up, then so would those around
me, but if I fought to carry on then I could inspire those same people instead.
I had to be the best Dad I could be, and my girls had to see that you shouldn’t
be defined by the horrible things you encounter in life, you should be defined
by how you react to them.
My anger burnt out and slowly turned to focus and
determination. I transformed from feeling beaten to feeling a hunger. I felt a
desperate need to help myself and others, to try to find a treatment or cure
for my own condition, which was already having a physical effect. I knew I
needed to change my whole career and this was daunting, I faced a profound
crossroads where my life would change from workshop to office, with all the
language, cultural and behavioural change that entailed.
I closed my eyes and dived into the deep end. I took all my
motor vehicle engineering experience and applied for a job at Volkswagen UK in
the fleet car sales department, picking up sales experience and a whole new
level of communication skills. I then used this experience to gain a job
purchasing components at an IT company, and after a few years pushed on once
more to work in a pharmaceutical company working on clinical trials.
My journey had taken me to a position where I could see
progress of medicines and results of many clinical trials including trials for
stroke, cancer, epilepsy and indeed muscular dystrophy, right in front of my
own eyes. I felt that maybe I couldn’t control my own destiny, but I could
still affect change, not for me but for younger people with my condition who
hadn’t had the same chance to enjoy life like I had.
It was in this period that my wife started to see stories on
social media of children receiving diagnoses of different strains of muscular
dystrophy, and we looked at our three fantastic girls and felt so grateful that
they were so happy and healthy. But that wasn’t enough, we couldn't feel
content solely with our own lives, unless we did something and tried to help
others.
Our new lives as dedicated fundraisers started by walking
one solitary mile. My plan was to push myself and my muscles further than we
thought possible, because I was slowly losing the ability to walk altogether.
We raised £1000 by walking to my local pub, supported by family and friends. It
felt liberating, inspiring and invigorating, but also absolutely exhausting.
But then someone at Muscular Dystrophy UK told us the difference our £1000
would make to the community; it would fund a whole 22 hours of expert research.
Imagine what progress could be made in that time? It resonated with me because
when I was first diagnosed, I was told there was no treatment or cure. No magic
pill could be taken to make things better. Yet we had given ourselves and
others hope by walking one solitary mile, and seeing a tangible benefit from it
would be the catalyst for so much more!
Fundraising had well and truly begun in the Hywood household
and many other households, because my infectious positivity became an influence
to others, just like I hoped it would. One mile led to many others. We walked
individual miles to many famous events like the F1 at Silverstone, the tennis
at Wimbledon, the FA Cup final at Wembley, we even recreated the most famous
mile ever; Roger Bannister's at Iffley Road, Oxford and so much more. By now I
had become a very proud ambassador for the 'Move a Mile for Muscles' campaign
at Muscular Dystrophy UK, and our fundraising team – “Hywood’s Heroes” - was
getting bigger, as were our events.
Being selfless and infectious felt fantastic and rewarding
in a pure and natural way. This was never more evident than when I pulled off
one of our biggest events by organising a group climb up Mount Snowdon, Wales
in 2017. Initially the idea was that a few friends would help me climb to the
summit, but in the end I persuaded over 40 friends and members of our family to
do it. This was a physical and mental challenge for a lot of them, but seeing
people extend their limits and achieve demanding personal goals, because of me,
was emotional and incredibly stimulating. You cannot describe that feeling of
inspiring people to cast aside their doubts, fears and anxieties and just go
for it. Personally I was exhausted, but I couldn't sleep for days, I couldn't
believe that we just did that. Euphoria.
 |
| Snowdon - The only way is up! |
With the help of these people and many others, we have since
raised £185,000 (4111 hours of research) and set up our own family fund;
Hywood’s Heroes for Muscular Dystrophy UK.
Our house sale in January 2020 presented our family with an
opportunity; to take a break, press reset and for me to finally look for a
dream job to replace the one I had to give up all those years ago. My wife said
I should be fundraising full-time and the goal was set; to find a fundraising
job either helping a children's charity or a mental health charity.
Psychologically I was ready to give this my all, because realistically I would
only be working for another 10 years due to the deterioration of my muscles.
With a massive desire and hunger to help others, I set about updating my CV,
which looked a lot like what you're reading now!
However, fate had one more bad hand to deal, but this time
it didn’t just affect me, it put the whole world on hold. On the 23rd March
2020 the UK went into lockdown due to the pandemic. I had no idea what the next
12 months would bring as I was petrified of COVID-19. My immune system is
already under lots of pressure, it is working overtime to help my body and
having to fight this indiscriminate and totally unknown new virus filled me
with fear and made me feel exposed and vulnerable. With the jobs market thrown
into chaos by furloughs and redundancies, my plans had been scuppered.
Shielding and anxious, I started to apply for any jobs I could find, but
everything was up in the air. I didn’t know what the future held, but I also
knew my immediate future involved facing up to a stark reality I could no
longer push to the back of my mind.
With a muscle-wasting disease, if you don't use your muscles
then you lose your muscles, and during the first stages of the pandemic when I
was holed up inside, I discovered this myself with sadness and resignation.
During 2020 I finally lost the ability to walk. My legs were exhausted and they
irreversibly conceded defeat, saying 'so sorry, we've had enough pal'. And it's
fine, we've been on some amazing adventures together with some beautiful family
and friends. But at the same time I felt like I was fading away, stuck
permanently indoors wrestling with nagging feelings that I was letting my
family down, I was the person I never wanted to be, I felt hopeless and yet
blameless.
One thing the last year has taught me, however, is that
friendship and solidarity is critical for us all to function and survive.
Luckily, during this period of solitude, uncertainty and overwhelming physical
change, I was comforted by so many messages of support from all over the place.
We even received a couple of food hampers from people when we missed shopping
delivery slots. So many people, often strangers, wanted to help because they
realised that charities were experiencing sudden and unforeseen funding gaps,
and the humanity and generosity we have seen and experienced over this period
has been incredible.
We had to cancel a star-studded comedy night; our biggest
and most high profile fundraising event yet, but we tried to escape the
isolation and helplessness of COVID by virtually fundraising. I even ended up
on SKY ONE with Jon Richardson and Russell Howard explaining what lockdown was
like from a disabled person’s perspective and once again, as a team, we went on
to raise over £25,000 doing lots of increasingly daft physical challenges
without leaving the house.
In 2021 I carried on with the job hunt, but in February I
got an end-of-the-month report from a job site stating I had applied for 76
jobs and made no progress with any of my applications; none whatsoever. It was
utterly soul-destroying; the futility of it all laid out in black and white.
Furthermore, I looked at some statistics which showed that disabled people are
29% less likely to be in employment than non-disabled people. That was a
statistic I didn't want to be part of. Also, disabled people have to apply for
60% more jobs than non-disabled people before finding one. I was very much at
the sharp end of experiencing this level of hopelessness and being shunned by
society. I was one of these statistics.
After a whole year of insecurity, anxiety, dead-ends and
despair, on Friday 5th March 2021 I woke up to the usual barrage of emails from
job sites with their latest jobs to apply for. But this time there was one on
the Charity Jobs website - Regional Corporate New Business Officer at Muscular
Dystrophy UK - that really caught my eye and I swear, the clouds parted and the
sun came out right there and then. I immediately applied and got an interview
for the position on the 24th March. I had plenty of time to prepare but I was
nervous, this was the perfect position for me. Maybe I’d been kidding myself in
some of those fruitless 76 applications previously, but this time it really was
the perfect job.
You’ve probably guessed by the title of this article
but... I GOT THE JOB!!! I’m back in the game, back in control and back making
a difference.
So remember when I asked you to spare me the time to start
changing lives like mine did? I want to thank you for that, but I don’t want to
stop there. If this journey I’ve been on has taught me anything, it’s that,
together, we can move impossible miles, climb mountains and give hope to those
who have none. I’ve learnt that many people making a small contribution can
deliver real change and that out of the time it took me to receive a diagnosis
and you to read this, we can make a real difference in the battle to deliver a
more positive outlook for those facing the diagnosis in the future. That action
delivers hope if you set about making a difference.
All my life I wanted to fix things. And now I have the
potential to find a treatment or cure for my very own condition, and if that's
not trying to help yourself in life then I don't know what is!
Now I need your action to join me in helping others. Could
MDUK be your company’s charity of the year, would you like to form a wonderful partnership? Do you have a corporate social
responsibility manager and/or a Human Resources manager that I could meet and have a coffee with? Or are you indeed that person reading this right now?
You can join me and everyone else in making a world of
difference to many people like myself, because our muscles matter. Get in touch
and we can discuss everything from walking miles to moving mountains, but
importantly we can talk about giving people hope.
Please do not hesitate to get in touch for an initial informal chat or email, my details are m.hywood@musculardystrophyuk.org and mobile 07899917868
#MusclesMatter
