Bringing Positive Change - BGC

BRINGING POSITIVE CHANGE

BGC - “Every year on September 11th, in conjunction with the Cantor Fitzgerald Relief Fund, we remember our 658 friends and colleagues and the 61 Euro brokers employees who were tragically killed by distributing 100% of our global revenues to the Relief Fund and many other charities around the world.”

Yesterday I attended the annual BGC day. The day was fun filled with many different charities benefitting from many acts of kindness, the building was filling up with a broad range of celebrities and ambassadors to represent those charities on the trading floor with commissions being won and donated to help so many great causes.

Muscular Dystrophy UK invited some families along for a festival themed day of fun and I think everyone left with huge smiles on their faces and also left feeling quite tired, I know I was!

There are many pictures below to show you what the day looked like, but I just wanted to share a few personal highlights of my own.

Rosie Davies recently shared her story with Muscular Dystrophy UK, telling us how her son; Finley had been on a treatment journey, a journey they never thought they would be on. Yesterday Finley was on the trading floor and sold a huge amount of stock and made £10,000 in commission (to go to the charities benefitting), he was beaming, and Rosie (Mum) and Joel (Dad) were laughing out loud and full of pride, as Rosie explained to me later.

Our Skye had been invited along to represent ‘Young Carers’, those young people that go above and beyond and help relatives and loved ones that live with a disability like mine. Things that many people take for granted like putting shoes and socks on, helping me get my wheelchair in and out of the car boot, shopping, cleaning, tidying and generally doing lots of things that any other adult would do. Later in the afternoon Skye met former West Ham striker Carlton Cole and they got chatting and Skye told Carlton why she was there, and she was very shy about it. Carlton was so impressed, he explained how his mother had been a carer all her life and he called Skye and all the people like Skye “Societies Unsung Heroes” and hearing that from him made me so proud and Skye just shrugged her shoulders… “It’s just what I do because it’s my dad”

Later in the afternoon, about an hour before we were leaving, I met a lady called Edie Lutnick, Edie was asking me if I was ok, enjoying the day, anything she could do for me? We got talking and Edie explained to me that she was the co-founder of Cantor Fitzgerald relief fund, the reason why everyone was there yesterday and the many years before. Edie and her brother set up the fund after losing their brother in the world trade centre on 9/11. This was an opportunity for me to show some gratitude and explain from a charity and personal perspective how important yesterday was and what a world of difference the funds raised would make and that what they have done with the BGC day is the pinnacle of selflessness. We shared a huge hug and then Edie took Skye under her wing for photos and to guess what flavour the huge celebration cake was.

In so many respects, a proud and emotional day.

Carlton Cole appreciating carers in society

Edie Lutnick, Co-Founder talking cake with Skye

Tomorrow (03/09/22) I will descend on Wembley Stadium, London, England. The reason for this is so I can attend a tribute concert to Taylor Hawkins, who in case you didn’t know was the drummer for the Foo Fighters - and I bloody love the Foo Fighters! Sadly, Taylor passed away on 25th March 2022, but evidence of his legacy is why I’m here and writing this. I have mixed emotions as I’m getting ready for this super gig as yes, it’s a huge historical musical event, but it’ll be missing a crucial piece. The upcoming gig has also been a catalyst for me this week to ask myself questions about my devotion to music - such as why I love it so much - and trust me, I really, really love music!

Subjective; a definition of which is “based on or influenced by personal feelings, tastes, or opinions”. I think when talking about music is where I use this word the most, whenever you speak to anyone or read anything about music, opinions are always subjective, there is no good or bad music and therefore you can never be right or wrong when talking about it. There is a difference however between someone who listens to the music and someone who truly hears the music - and I think after all these years I hear the music; it really goes in and stays (If I want it to).

The origins of this are in growing up with parents who would play music on a Saturday or Sunday morning whilst doing housework. Everyone up, bed covers off, all windows open, hoover going, record player on. The record player in their house would play Boney M, The Beatles, Stevie Wonder (Songs in the Key of Life), Buddy Holly, Status Quo (I know right - but Dad went to school with Francis Rossi), Kraftwerk, Diana Ross, Jean-Michel Jarre and so much more.

In fact, the tradition of cleaning while playing music loudly has now been handed down to my very own family, albeit without the record player, instead it’s blasted out on a Yamaha soundbar using Bluetooth. After my parent’s influence next came that of my older brother, friends, and the estate on which we grew up and I just fell in love with so much, but my genres of choice were reggae and hip hop (The latter not just because of the tunes, but also the graffiti, trainers and breakdancing too!).

What I found fascinating about both these scenes were the opportunities artists took to spread a message. With reggae you had Bob Marley telling the world about the injustices people faced, singing selflessly for others. The same can be said for the likes of Public Enemy (For example on Fight the Power), a group feared by the authorities because they knew that they had the kind of influence which could overturn them. Other bands and movements like punk had a similar menace to the system, and rock bands with both shredding guitars and voices were too, Zack De La Rocha and Rage Against the Machine embodying people’s desire for rebellion (Sample lyrics “Fuck you, I won’t do what you tell me”). I embrace this, I love it when people tell us to stick it to the man!

I have been lucky enough over the years to be very vocal about my passion for music. During the height of Oasis Vs Blur fever in 1995, I was working at HMV and getting a 30% discount too! My back catalogue and library of compact discs grew massively and once again I was being influenced, this time by what I was hearing on the shop floor.

Now my earlier influences in Kraftwerk and Jean-Michel Jarre were transitioning to The Flaming Lips and even today it’s that love of embracing new things that makes me for instance the biggest Future Islands fan. That job genuinely made me feel like a kid in a sweet shop, with influencers around me every day, colleagues saying things like “If you like that Martin, you might like this.” I remember once getting a limited edition copy of an album called ‘Dookie’ by a band I’d never heard of called Green Day. Wow! I still play that album from track one to fourteen now and don’t ever skip a song. Whenever a customer asked me what my personal taste was my answer was always “Anything from Abba to Zappa” because it was and still is, plus it made complete, alphabetical sense working in a record shop that displayed everything that way.

It wasn’t just working in a record store that filled me with new possibilities, that made my musical knowledge and love broader, my older brother as I previously mentioned was also hugely influential in the development of my listening habits. I never remember receiving a mix tape from a girl as a sign of affection when I was younger - it was always from my brother, like clothes and toys too, times were hard! I did however learn how to compose the right mix tape myself and send them onto Michelle, my now wife, so cheers bro.

As times have changed, I have shared my views and tastes of music on social media and spoke to a lot of like-minded people and I bloody love it. The record collection in my brain is huge, it’s like a massive psychological flight case up there. One of the biggest influencers on me in recent years is my mate Mr Arctic Reviews; Andy P to most. I was lucky enough to be able to write a piece explaining my love of music whilst writing as guest blogger on Andy’s website and that article is here - Lively Up Yourselves . Andy is an amazing writer and I can only wish to be anywhere near his standards, to be able to wear your heart on your sleeve and express that passion in written paragraphs is extremely difficult, kudos to Andy and others just like him, we’re not worthy.

Back to the future, tomorrow we descend on Wembley stadium to pay tribute to a rock icon - but the day won’t simply be a commemoration of Taylor Hawkins work, it’s going to be a celebration of his life and seeing the extensive and diverse line-up I consider myself extremely lucky to be there.

Music has always been and will always a very important part of my life. It’s lifted me to my highest heights and picked me up when I have been at my lowest lows, it’s an energy that I thrive on. On days when I am suffering most with my life-limiting, muscles-wasting condition I can rely on music to keep me moving, for my mind to then go to a positive place, as there’s nothing at all that is negative about it, and it makes me quite ironically feel like I’m standing over 10 feet tall.

Thanks for reading – and whatever kind of music you love - get listening!

“One Good thing about music, when it hits you, you feel no pain!” – Bob Marley

To Be Inspired

I have been reflecting this week on one year in my job and lots to do with life in general and not to burden you with goo and gushy writing I just wanted to try and understand myself how I got here.

Reading and writing has helped me massively, and I never thought it would because it was always something I was told that I was no good at, I remember so well when the teacher in my middle school (Ashmead) told me how my writing looked like a spider has jumped in an inkwell and ran across the page “I don’t know why you bother doing my homework at all!”.

I think a light switched on for me when I was about 43 years old. I started to read which was a catalyst for me to write. I was reading about people like Dr Wayne Dyer, Inky Johnson and more recently Wim Hof and of course as you all know by now, I’ve been listening to Bob Marley all my life, so with all of that and TED talks too, I feel that my eyes and ears have been opened a lot.

It was Inky Johnson that said, “why not me?”, these three simple words helped me so much, to use your loss or disability to help others rather than say “Why me?”.

When you change the way you look at things, the things you look at change. Albert Einstein once observed that the most fundamental and major decision that you have to make in your life is this… “Do I live in a friendly or a hostile universe?” which is it? Is it a universe that is filled with hostility and anger and people wanting to hate each other, people wanting to kill each other, is that what you see because when you see the world that way that’s exactly what you will create for yourself in your life, this is from great scientific minds and the interesting thing is that this is not just a clever play on words that when you change the way you look at things, the things you look at change. Imagine the following scene… You’re in your house, you have your car keys in your hand, the lights go out, power failure. You can’t see a thing; you stumble around in your living room, and you drop your keys and you look around for a moment and you realise that you’re never going to find them in the dark but you look outside and you notice that the street lights are on. So, in your mind a light bulb goes off “I’m not going to sit around here in the dark and grope around looking for my keys when there’s a light on outside, I’m going to go out here under the streetlight and I’m going to look for my keys”. You may be laughing, this makes a lot of sense, so you’re out here groping around and you’re looking for your keys and you’re looking and looking and your neighbour comes along and says “What happened” and you say “well I dropped my keys” and the neighbour says “well I’ll help you look for them” so now there’s two of you on the ground looking for the keys and finally he says: “excuse me but where did you drop your keys?” well um… I dropped them in the house. He said, “you mean to tell me that you dropped your keys in the house and you’re looking for them out here in the streetlight, it doesn’t make sense” and you said well, it doesn’t make any sense to grope around in the dark when there’s light out here. So many laugh and think how silly that is but it is exactly what we do, when we have a problem, a difficulty, a struggle that is located INSIDE and we’re looking for the solution OUTSIDE. Some place outside of ourselves. It would be like going to the Doctor and telling him all of your symptoms and the doctor says: Oh boy, you’ve got a lot of symptoms and he starts writing our prescriptions. You need a prescription for this symptom, you need a prescription for that symptom and finally he gets 4 or 5 prescriptions, and you go to walk out and say well I’d like my prescriptions and he says “No, no, no, I’ll give this one to your mother-in-law, I’ll give this one to your neighbour, I’ll give this one to your boss…” and so on and so on. You’re the one with the struggles and with the difficulties expecting somebody else to change or something outside of you to get better in order for you to make your life work is something you really have to take a hard look at, it's inside of you.

It's not always been this way, I’ve not always been the inspirational one to look up to, far from it. I remember before Michelle came along and before I decided to go from negative to positive, I had nothing at all. I lived in arrears in a council house that I wasn’t worthy of and eventually, justifiably, got evicted from and had to live in a bedsit by myself with other people who I didn’t even know, and I felt the lowest of the low and everyone thought I was happy-go-lucky Martin, the life and soul. I had made massive mistakes and it wasn’t until I put it all on myself that I would be able to get back up again. It’s similar to trying to encourage an addict to give something up when they’re not in a place to do so, and then there was a light switch moment and I knew the only person that could help me, was me.

I heard this a while ago and it resonated with me so much that it still has some of my headspace today, I heard a story from Wayne Dyer who was visiting an addiction centre and the sign on the wall said “There are no justified resentments in this group” and what he said to the group that night was no matter what anybody says to you here, no matter what kind of anger comes directed towards you, no matter how much hate you may encounter showing up in your life, there are no justified resentments. Meaning, that if you carry around resentment inside of you, about anything or about anyone and I’m talking about the person that you lent money and hasn’t paid you back, I’m talking about the person in your life that you feel was abusive in your life, I’m talking about the person who walked out on you and left you for someone else, I’m talking about ALL of the things that you have justified in your heart and in your life that you have that right to be resentful about and I am suggesting to you that those resentments will always end up harming you and creating in you a sense of despair. No one ever dies from a snake bite. The snake bite will never kill you. You can not be un-bitten. Once you’re bitten, you’re bitten. But it’s the venom that continues to poor through your system AFTER the bite that will end up destroying you.

Occasionally all of us deserve a top up on good things, it is recommended in the third sector that we watch, read and listen for inspirational stories and inspirational people to keep the fire lit. I feel everyone in life should look out for positives and try to better ourselves as people, as I already said, it’s all on us and if we better ourselves from the learnings of other then so be it.

Lastly, gratitude is everything to me. I used to wish for so much and felt hard done by but now I have huge focus on what I have and not on what I do not have, I feel extremely lucky.

 

Be good, be nice and look out for others and not for others faults.  x

#MusclesMatter

One Year at MD UK - A very lucky and grateful man

The Importance of Good People

“It is a fair, even handed glorious adjustment of things that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good-humour”

I never thought I would be writing and indeed quoting Charles Dickens’ Scrooge in my little blog but here we are and although my condition is not infectious, sorrow and laughter equally can be. I was dragged up on the best of British comedy, it is constantly coursing through my veins, it’s a part of my DNA a lot like my muscles-wasting condition quite literally is. There is also a saying that some people can laugh in the face of adversity and I have no choice and I actually enjoy it, it’s my challenge to see who wins, every single day, my weakening muscles and body or my sense of humour that challenges it.

An example of this was a couple of years ago on Christmas day when after spending time at the in-laws we had packed the car ready to go home and I slipped trying to get in the driver’s seat. It was raining and I had parked on the grass and I simply could not get back up and my wife was laughing her head off trying to figure out how to get me up and in the car. I cried too, with laughter, “just leave me here in the mud, I’m too fat to move”, eventually after a good few minutes we got my muddied, weakened body into the car both with tears rolling down our cheeks, these were good tears, we had won, albeit we were both absolutely filthy and knackered!

So, comedy and humour, some might say dark or twisted humour, is ingrained in me, it has been since day one. I was brought up on Monty Python, The Goon show, Carry On, anything written by John Sullivan, Porridge, Morecambe and Wise, Victoria Wood, Julie Walters, The Young Ones, French & Saunders, Desmond's, Bottom, Dudley Moore & Peter Cook, along with a whole host of stand-ups like Bruce Forsyth & Norman Wisdom at the London Palladium, Billy Connolly, Peter Kaye, Lee Evans anything at the BBC Apollo and even some influence from the other side of the water like Robin Williams, Richard Pryor, Bill Hicks and the list goes on.

I’ve absorbed all of these like a sponge, some of this subconsciously as my dad always listened to the Goon shows on the wireless in the kitchen, as he would Dudley Moore and Peter Cook but I loved it and I’ve used it to my advantage too when I’ve needed it most. I remember shortly after my diagnosis in a hospital in Oxford, the doctor had told us that this was a life-limiting, muscles-wasting condition and not much could be done but I was asked to undergo some tests in my underwear, which was pretty undignified because my body doesn’t look the same as others. Before these tests were carried out he asked if I minded if some student nurses came in to observe my movements when carrying out these exercises and everything else that was asked of me. I thought for a while and then realised that if I didn’t let them observe then there wouldn’t be any other chances to do this for anyone because this is such a rare disease, so if I let them as they were the medics of the future and could help someone else going forward. The students came into the room, about 12 of them, and instead of shy away and be scared and worried I ensured them that would never see another body like mine, that what they were about to see would impress them so much and that made me smile inside and made some of them smile on the outside too!

20 odd years later and I went to a football match and just so happened to meet comedian Jon Richardson and he said something like “I’ve read your blog, it’s great, if you ever want me to help out in any way then let me know, here’s my number…”. What Jon didn’t realise was that he’s a hero of mine as in my humble opinion he made one of the best Apollo appearances ever and here we have Mr Clean shoes, Mr La Dee Daa offering to help me (Link to that Apollo gig - The Apollo ).

I called Jon less than 5 minutes later asking him for help with something I had just dreamt up - if we could pull it off it would be amazing and he agreed to call me back on Tuesday evening. I thought I’d blow my chance because I’d jumped at the chance too quickly, but it turns out Jon did ring me back but unfortunately, I was watching ‘Saving Lives at Sea’ on BBC2 on a Tuesday evening, and I asked Jon if I could ring him back later. Was that my chance gone? Not at all, I called Jon back and suggested a BBC Apollo style of event where he could host and bring some of his friends from the comedy circuit along to the show - and the answer was yes!

Mid 2019 and I had the opportunity to be part of a comedy show with the UK’s best talent, a dream could come true. I needed a venue, and I desperately wanted the show to be in my hometown of Aylesbury. The venue was important to me because it would give me the opportunity to give family & friends a small token of my appreciation and gratitude for all their fundraising efforts over the years at the cost-effective price of a ticket.

Sometimes, when it comes to fundraising, I have the Midas touch, I don’t know how it happens and I cannot explain it, but doors open for me, things happen beyond my expectations, and I feel extremely lucky and grateful for that.

Later on that year I had been invited to a party in a pub garden and one of my former colleagues, Phil Chamberlain introduced me to his wife “Hey Martin, this is my wife Steph, Steph works at the Waterside Theatre in Aylesbury”. LIGHTBULB! After I sat down with Steph and explained my idea, I imagine she couldn’t believe it, it sounded impossible but my thought was what a gift to the town if we could pull this off. Steph kindly arranged a meeting with her boss Julie Chitty, and it was at that meeting that I knew I had just made some friends for life. Every question I asked Julie and Steph the answer was “Yes, yes, and yes!”

26th September 2019 I announced on social media that we would host a comedy gig at the Waterside Theatre, Aylesbury, 9th April 2020. ‘Jon Richardson & Friends’ was actually going to happen!

And then it wasn’t.

On 23rd of March 2020 we were all asked to stay at home and I was supposed to shield away from the world because I am a clinically vulnerable person. This went on for at least 18 months and in that time we were met with a harsh reality of my condition, shielding had left me still and static and with that I had lost the ability to walk, my body just deteriorated and I couldn’t help myself, I had felt utterly useless at this time, I suffered from a side-effect of Covid-19. Like always though that was not where I set my concentration, we were still fundraising during lockdown and up and down the UK we had people doing just that, albeit indoors. People climbing the equivalent of Mount Snowdon on their stairs, our friends at The Square Ball were playing Football Manager for 24hrs non-stop, Jon put on a gig on Instagram LIVE with his pal Russell Howard and I even appeared on Sky One with Jon and Russell, which was unbelievably surreal.

Let’s fast forward a bit and after many, many rearrangements were made we eventually got a firm, new date for the gig; March 27th, 2022. Jon Richardson & Friends consisted of Jon, Suzi Ruffell, Harry Hill, Marlon Davis and Russel Kane. With the amazing help from all the staff at Muscular Dystrophy UK, all the staff at the Waterside theatre and our fantastic comedians, the gig was finally upon us.

I met Jon at the theatre with my family and it wasn’t long before the other comedians arrived, and they were all so humble and would not take any thanks or praise. I was speaking with my colleague Debbie, and we were just strolling along the corridors of the theatre and suddenly I was on stage doing a sound check with Jon, Harry and Suzi. This I thought was crazy!

Sound Check!

We had a charity raffle table in the foyer of the theatre, and I wanted to go and check on our volunteers before the curtain went up and I was overwhelmed, I was stunned, and then elated by what I saw. Here were our heroes, our volunteers, our marathon runners, our mountain climbers, cyclists, swimmers and all-round fundraisers in family and friends from all over the UK, I didn’t have time to speak with everyone but for myself and Michelle it was a spectacle. I had been indoors for the best part of two years and the first proper time I had been out was here and now.

Some Hywoods Heroes!

Some more Hywoods Heroes!

It was now so much more than just a charity fundraiser, this was a celebration of family and friendship, and I was bursting with so many emotions, but I had to contain myself as I had promised to go on stage after the show, announce the raffle winners and close the show and this petrified me.

I never expected to do that. I always thought I would bottle it and pass the numbers to Jon to read out or just curl up in a ball in a corner of the theatre somewhere, but I remembered a quote from a family favourite film of ours… “You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of embarrassing bravery. And I promise you, something great will come of it”. I cannot believe I did that, and I cannot thank my wife, Michelle, enough for being with me and giving me that courage.

20 seconds of courage

A huge thanks to everyone involved with what happened on March 27th, I’ll never forget it, it was sincerely one of the best things that has happened in my life. I actually took the stage with confidence and pride, and I always wanted to prove to my girls that we should not be defined by bad things that happen in our lives, our reaction to those things should be what defines us as a person and I got the opportunity to say that out loud, on stage, in front of 1200 people and my girls were in the crowd.

I just hope that I have made my family & friends proud of what we have all achieved and I am so grateful to everyone that helps us as a family. The importance of good people in our life is just like the importance of heartbeats. It’s not always visible but silently supports you. Myself and my family will be eternally grateful to you all.

A very special thanks to Mr Clean shoes, Mr La Dee Daa!

#MusclesMatter

#HywoodsHeroes

Get Involved - Here

That's All Folks!

Insert Coin to Continue

It took about 20 minutes and lots of cursing, but it came to life, Dad had just tuned the television into an arcade machine with a borrowed games console and the screen lit up with the word ‘Pong’ and from this day onward I would become a self-confessed addict to video games. It must have been 1978 when this machine turned up in our living room and as quick as it was here it was gone again, I had no idea where Dad got this technology but it was above our standard of living, I mean we were having to put 50 pence pieces into the back of the television to get it to work, there was no extra money in this house for a games machine.

We had one weekend with this machine from outer space and then it was returned to its owner, but it had left a lasting impression on me that would never leave. A simple game of bat and ball but in sprites on the family television, first to 21 points, it was as simple as that and now I’m going to take you on a potted history of my video game addiction, right up to today…

Shortly after that initial slither of home entertainment arcades were opening in the UK and game technology was moving fast, as was I, doing all I could to earn and gather 10 pence pieces for the arcade at the back of my local video shop. Ironically, I was 12 years old and started my paper round for the local newspaper and my local newsagents to fund my habit and the game of choice on a Friday pay day was ‘Paperboy’, launching newspapers at the coloured house and avoiding non-subscribers, their dogs and drain gates, hoping and trying my best to get to the end of ‘Easy Street’ as many others watched over my shoulder, waiting for failure and hoping for my demise, coins in hand, kids wouldn’t think twice to trample all over you to be next to grab those handlebars.

I was off school with tonsillitis one day and went to the shops with my Mum and persuaded her to let me go and have a look around the arcade behind the video shop whilst she shopped for food across the road. I walked in and two blokes were removing the Paperboy cabinet and replacing it with a new game, and I was first to see it, all alone as all the other kids were in school. I was beaming waiting for it to be plugged in and when it was the screen lit up ‘Bubble Bobble’ it said and one of the blokes put a 50 pence piece in it, 5 credits… “Go on then son, away you go!” FREE CREDITS! I got in trouble that day as mum had to ask the local policeman to help find me because she didn’t even know the arcade existed at the back of the video shop and therefore didn’t look in it to find me and 5 credits will get you a long way with a 100-level game like Bubble Bobble and this was my first experience of being a video game ‘completionist’, an obsessive who wouldn’t give up until I had beaten the machine, blasting bubbles at the enemies, hoping to burst them before they got out and chased me. The other thing about Bubble Bobble was that it had a soundtrack, something that would become so important to gaming, like the game it was repetitive and addictive but brought on huge anxiety as it sped up if you were running out of time on the level. Next to Bubble Bobble was R-type, my next love affair, encouraged to blast off and ‘Strike the Evil Bydo Empire’, a small space craft with a detachable gun taking on huge end of level bosses, one of my greatest achievements in life is leaving that arcade on a rainy Saturday morning having completed R-type and my name ‘MAD’, being at the top of the leader board.

Autumn 1986, It’s a Saturday and there is a school trip to Alton Towers, not the most popular kid I decided to go alone, no family, no mates, just me. It was easier that way anyway, I could go where I wanted and go on what rides I wanted but I was side-tracked, I spent all my money and most of my day in the arcade playing the new kid on the block… Out Run! Out Run was my first love when it came to the racing genre which would become my game of choice over any other.

Get Ready!

The object of Out Run is to speed across the map in your Ferrari Testarossa Spider with your beautiful lady sat beside you as you listen to the Magical Sound Shower, it was dreamy, the sound and graphics were incredible but it was difficult and I always ended up seeing the request ‘Insert Coin to Continue’ which was now a 20 pence piece, times they were a changing’, so I did what I was asked and zoned out in awe of the game in front of me, day dreaming “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

1987 was the year when the arcade truly came into the house, games consoles had made a huge leap and in 1987 the consumer had a choice of 8-bit systems, the Sega Master System, or the Nintendo Entertainment System. Luckily, my paper round had turned into a job in the newsagents during all holidays and weekends, so I was earning a wage at 14 years old and eventually got both the consoles mentioned above and my gaming stayed that way, always buying the latest, next generation system… Sega Master System, Nintendo, Sega Dreamcast, PlayStation 1, 2 and 3, Xbox, Xbox 360, Xbox One and now the Xbox Series X.

My first...

My last, my everything

Along the way I had some massive highlights like Tony Hawk Pro Skater (1999), Call of Duty 3, Eder Dam being my first ever truly immersive online experience (2006) and then there were the games that had those outstanding soundtracks that I touched on earlier. Fifa 10 (2009) rocked out The Enemy, Be Somebody, GTA V (2013) Damien Marley, Welcome to Jamrock was perfectly fitting, to me, music is a special part of the whole gaming experience.

I’ll try to conclude here but I really could go on forever writing about something I’m extremely passionate about like this. A recent blockbuster for me and many others was Rockstar’s fantastic prequel; Red Dead Redemption 2 (RDR2), a fictional recreation of the American Old West in 1899, RDR2 focuses on the life of Arthur Morgan and his position in the notorious Van Der Linde gang. The game follows the gang’s decline as they are pursued by lawmen, fellow gangs, and Pinkerton agents. This was the closest to being in an actual motion picture as it would get, an emotional roller-coaster of a game that blew me away.

Arthur Morgan - RDR2

5^th November 2021 00:01, 200mph in the Mercedes-AMG Project ONE as I launch the latest release from Playground Games; Forza Horizon 5 (FH5), now this game is incredible! Based in Mexico the latest instalment of the series is breath-taking, in my opinion this is the first true experience of next generation gaming, sure the Series X was released in the UK on 10^th November 2020, but I think it was waiting in the darkness until this moment. The scenery is mouth-watering, and the car selection is hugely extensive, the play list comes with a recommendation from me – ‘Midnight Kids, Everything You Are’ and the missions, well the missions are a plenty! In fact, to begin with, there’s too much to do, it’s slightly overwhelming in that respect. One thing I haven’t mentioned until now is what video games truly mean to me, why are they so important to me, well they mean the world, they are a leveller, my disability is non-existent in the gaming world, I am equal. With that said FH5 is the most accessible game ever made. Accessibility features include American Sign Language (ASL) and British Sign Language (BSL) support for cinematics; a game speed modification setting that allows gamers to play at a reduced rate; customisable subtitle options; High Contrast mode, Colour Blindness mode, personalised button configurations and more. It seems that the developers made inclusivity a priority and I love it!

I am 47 years old, and I am stunned by this game… “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

The Champion of the World!

To Be Someone Must Be a Wonderful Thing

The title here has been taken from a song originally by The Jam and then covered by Noel Gallagher. I was recently listening to this in the car on holiday with my family in South Devon and it sparked an internal conversation with myself; it was thought-provoking.

Essentially, the song alludes to fame, success and inclusion and finding acceptance only because of the fame and success. In reflection of recent events it made me feel that I would just like to be included, and that abled-bodied people were the ‘Someone’ that I wanted to be; I just want to be treated the same way as the rest of society, accepted at all costs rather than being frowned upon because I was a burden or an inconvenience. It’s unacceptable not to be accepted.

Imagine you’re with your children on holiday, by the beach and treats and sweets are small pleasures we take at this time of year; everyone loves an ice cream on the esplanade or promenade, right? They offer 90 different flavours. I love a mint-choc-chip myself.

But there’s a problem, a physical barrier in the way; I can’t get into the shop in my wheelchair.

This scene is played out perfectly in the fantastic new Paralympian film on Channel 4 (Super Human - seen here) where we see rugby player Kylie Grimes denied access into Larry’s Café because of the step outside. She turns and retires, swearing under her breath. That was me, is me and will now be me going forward, forever... unless things change.

Some things are changing though, quite literally. Changing Places toilets are now popping up all over the UK, and this is a big deal and needs to be shouted about like my colleague Kerry Thompson (Changing Places Support Officer) shouts with so much enthusiasm. It is a very taboo subject but one that needs to be brought to the forefront. I hold my hands up when I’m slow on the uptake of a campaign and Kerry is streets ahead of me, and I commend her for all her hard work and campaigning for others. The Changing Places consortium is a group of organisations working to support the rights of people with profound and multiple learning disabilities and/or other physical disabilities. Established in 2005, the consortium campaigns for Changing Places to be installed in all big public places so people can access their community.

So we’re now, slowly but surely, finding it easier to spend a penny. But what about going back to spending our pounds? Why am I not able to buy my girls an ice cream on holiday? Why is my money less acceptable than other people’s money?

I think it’s time we spoke about the ‘Purple Pound’. The Purple Pound refers to the spending power of disabled households. A disabled household is a household in which at least one of the members of the family has a disability. Organisations are missing out on the business of disabled consumers due to poor accessibility (both physical and digitally) and not being disability-confident in their customer services approach.

I’ll give you just three statistics to think about:

Business lost in the UK because disability considerations have not been made or met:

· High Street shops lose £267 million per year

· Supermarkets lose £501 million per year

· Banks and Building societies lose £935 million per year

So you can see that the Purple Pound is very big and powerful. The annual spending power of disabled people and their households continues to increase (14% each year), and is currently estimated to be worth £274 billion per year to UK businesses.

Why do businesses not want the Purple Pound, and as a society why do we accept this?

When we think of diversity and inclusion nowadays, we know that many conversations are being had and that people are learning so much, so fast and this is fantastic. But why is it considered acceptable that disabled people are not included in so much? This attitude simply would not be accepted if different demographics in our society where treated this way, and rightly so.

In November 2010 the food hygiene rating scheme (FHRS), which operates in England, Wales and Northern Ireland, was formally launched. This is a system that tells the public how hygienic an establishment is before you walk through the door. Most places have stickers on the doors or windows, and all can be found online too.

What if we carried out similar tests in businesses to see how accessible they were? What if there was a ratings system for disabled consumers?

We’ve seen with the FHRS that 5 star establishments get the most custom, so the same would happen with disability, surely? Or will this never happen because so many businesses would come in at a one or two star rating? The FHRS rating is a badge of honour for a business, and its standard of disabled accessibility should be too. Or are we just paying lip service to inclusivity?

I am writing from a personal standpoint of utter frustration here, but I’m now going to actively campaign more as I have been massively inspired by my colleague Kerry Thompson, the Changing Places network, my friend Rich Copson (co-founder Access Rating App) - who has been talking about these subjects for a while now - and the wonderfully powerful Paralympics advert on Channel 4.

Super Human - Comfortable, In my accessible Dojo

Nearly every day something changes for me, I am always learning and I need to adapt and adjust. With my muscle-wasting condition things change quickly; one day I can lift my mug of tea to my mouth and the next I have to have a smaller cup and not a large mug. Sadly, many of us could easily be affected by disability; in the blink of an eye our lives can change. As always, I like to think of others; if my experiences are negative ones then it is always going to be the same or worse for others, and I don’t want that. One thing I’ve learnt quite quickly is to never take anything for granted, and I see that as a very positive thing. I feel lucky to think that way.

To be someone must be a wonderful thing. But I don’t want the guitar-shaped swimming pool in the song, I don’t want to be a famous footballer or to be rich and have a lot of fans, have a lot of girls to prove that I’m a man...

All I want is to be able to go to the toilet when I need to when I’m out and about. All I want is to enjoy that mint-choc-chip ice cream on the prom with my girls. All I want is to go for an all-day breakfast in a café like Kylie Grimes. All I want is a fairer and equal world for others.

All I want is some small changes that could make a huge difference.

#ChangingPlaces

#SuperHuman

#Paralympics

I Got the Job

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