What's it Really Like?

My wife was recently asked by a colleague “What’s it really like?” referring to living with a muscles-wasting condition. She came home asked me and I tried to explain it. This isn’t the easiest of questions to answer but here is what I found my honest and raw answer to be. It’s all in here from diagnosis, depression, career change, determination, fundraising, fear, friendship, and a whole lot of love.

Moving Mountains

I left school at 15 years old, with a handful of GCSE’s. I remember it like it was yesterday, I had ‘Dub Be Good To Me’ by Beats International playing on my headphones as I walked through the front door until my mum quickly chaperoned me, back out the front door! My first ever interview had been arranged for me, I was on a bus to Princes Risborough to meet what would be my first boss in my first job as an apprentice motor vehicle engineer. There was no rest for the wicked, I started that job the very next Monday morning after having two days off. I had always wanted to fix things, I took pride in making things better from Walkman’s, BMX’s and even our bunk beds, and it turned out that I was good at it too! So much so that I was head hunted to work for a main dealership away from my first job after successfully completing my apprenticeship. I couldn’t have been 6 months into my new role when I slipped in the workshop, dislocated my right knee, and got trapped under a vehicle lift. This resulted in my first ever trip in an ambulance to hospital where my leg was very painfully put back into its correct position. Bandaged up with a bottle of pain killers and a set of crutches I was released to relax and recover, only I didn’t. My knee wasn’t healing in the time expected and at the same time my older Brother was having lower back problems. The next bit is a bit blurry but myself and my brother were pushed from pillar to post, around many medical professionals, hospitals, and clinics until we ended up at the Radcliffe Royal Infirmary. I remember very clearly, a professional man called Dr David Hilton-Jones, consultant neurologist, an expert in his field. “Just give me the medicine, the pill that I need, and I will be out of your hair”, I said, he replied, “There is nothing for you, we have no treatments or cures”.

We were surrounded by all our family, every single person that had ever loved us was in that room as we received a devastating diagnosis of a muscle-wasting disease called Muscular Dystrophy, it was clear that nothing would ever be the same again. We were all trying to take on so much information yet, despite being surrounded by the people I loved so dearly, I heard and felt nothing at all really, other than uncertainty everyone and trying to take on so much information, I heard and felt nothing at all really apart from uncertainty. All the comfort and support I usually felt from those sitting next to me just vanished. I felt like the loneliest man alive as I watched a rain drop gather pace on the window, swallowing up the other drops and as it got bigger and bigger. Words were coming into my head… “Why me, why has this happened to me?”

 With my diagnosis came so much self-doubt, after being in Oxford I went back to my GP and he said, “You’ll never lift a wheel again” I would have to think of a career change or he could simply sign me off sick, forever. I was so angry, I was venting every day, utterly frustrated - I simply wasn’t worthy of this life and certainly wasn’t worthy of my new girlfriend at the time, her name was Michelle. I tried my best to push Michelle away, to get her out of my life - I didn’t want anyone to share this pain, I felt like it wasn’t fair on me so I shouldn’t put anyone else through it with me. Luckily for me, Michelle is one of the most beautiful people that you’ll ever meet in your life who has a heart of gold and her love, loyalty, and dedication to me was relentless and unwavering as much then as it is now.

My Bell

With Michelle’s commitment and love I started to thaw out a bit, slowly but surely that anger, self-doubt and depression started to lift. I was starting to see through a fog, a mist had started to lift and I started to feel a fantastic sense of determination to try to make a difference for myself for the first time since I received my diagnosis, I started contemplating a change of occupation, to take the knowledge I had and somehow try to find something new, I had no idea about the journey I was about to go on but please do join me on it if you haven’t already, over the next couple of pages, trust me, it’s fantastic!

I grew up in the 80s, one of five children and times were hard. But I always remember that my parents worked, sometimes both having two jobs to make ends meet. Ships passing in the night, never out of a job, even if it meant going from one to another in quick succession, always grafting. I remember once and it stuck with me forever, it was two nights before payday and the house was freezing and the cupboards were bare apart from two tins of minestrone or vegetable soup. My parents watered it down and fed us, they had nothing. The next day our neighbours shared a casserole so we got through to pay day, but I will never, ever forget that. I never wanted to be in that situation in my life again and I took on my parents work ethic of grafting and doing all you can to keep the roof over your head and to have food in the cupboards, which stood me in good stead for life.

I took my motor vehicle engineering knowledge and found a job in my local newspaper as a ‘collection and delivery’ driver for Volkswagen. I loved it. It was just driving but it was great, and it also gave me an opportunity to work on the service desk. From there I went upstairs to the offices and eventually I climbed so high that I ended up in fleet car sales for Volkswagen UK. This job gave me lots of confidence and experience in talking to people, convincing people that this is the perfect product for them. I believed in the brand, and I believed in myself.

The 90s, Britpop, Definitely in the Oasis camp, no maybe about it.

Time for another career change. I noticed a job come up in the aforementioned local newspaper for an entry-level admin role at a local information technology (I.T.). I went for it and got it, If I’m honest, I was absolutely clueless, so much so that I spent the weekend at a friend’s house trying to learn everything you needed to know about I.T, software, hardware, operating systems and everything in-between. I was determined and I did learn everything I needed to. Once again, I stared to grow and climb, knowing I needed to get good and quickly as this industry was moving fast. We had this new thing called emails to deal with and everything! We were a solutions company, and we were building supercomputers for blue light services, education, and government departments. I eventually made it to peripheral buyer for the whole company but unfortunately for me the actual company was purchased by another, and I was let go.

Like me, the local newspaper was redundant, jobs were now on the worldwide interwebs!

2009, Black Eyed Peas top the charts with ‘I Gotta Feeling’ and boy oh boy did I have a feeling about the next job…

“Vacancy for position in pharmaceutical I.T., apply within” so I did, and I got it. I found myself working on clinical trial paperwork for Epilepsy, Stroke, Cancers and indeed Muscular Dystrophies. I felt like I had made it, I was at the top of the tree so much so that I spent 10 years at this place of work, and I loved it so much.

I’m getting there professionally; things are falling into place for me to be in the best position to help myself and others. But these things aren’t easy it requires dedication and determination and sometimes you need help, don’t know about you but I really don’t like asking for help from anyone. We are lucky to live in a society that looks after its own or you’d like to think we do. In 1948 Britain introduced a social security system that took care of those less fortunate. These were not handouts, and they are not handouts to this day, although the language has changed around them. The likes of channel 5 and the Daily Mail now call these ‘benefits’ and make the claimants like me feel riddled with guilt for applying for help that we may need. All of this didn’t sit well with me. I was made to feel awful for something I was entitled to, something my grandparents, my parents, my siblings, my partner and myself had contributed into all of our lives. Not everything is as positive as much as I would like it be. This still gets my back up to this day and has made me more conscious of unfair and unjust situations that disabled people face, activating the activist in me.

Another thing going on in our lives, outside of work, is the diagnosis of others and I wasn’t noticing this, Michelle was. Michelle had subscribed to the Muscular Dystrophy UK magazine called ‘Target MD’. Muscular Dystrophy UK is the charity bringing individuals, families, and professionals together to fight muscles-wasting conditions. Through Target MD Michelle was reading about young families receiving a diagnosis with a prognosis worse than my own. Michelle was also reading about the transformational funding and research that was happening and reached out for support from the advocacy service which she said was a godsend. However I still wasn’t in a place where I wanted to know more about the condition nor did I want to meet anyone else living with a muscle-wasting condition, but I did know this… One day I also read some of those stories that Michelle was reading and after seeing some pictures of those young families affected whilst looking at our three happy and healthy girls, I quickly realised that we could not keep going on being content with our own lives, we had to start to help and get involved with fundraising and raising some awareness about these rare diseases.

Cue a montage played to the theme of Vangelis – Chariots of Fire, as I ran the London Marathon with the wind in my hair, raising thousands of pounds for charity, cross the finish line and receive a beautiful gold medal around my neck, interviewed on the finish line by Gabby Logan on BBC TV, I wave to screen and mouth “Hi Mum”.

Not really, it wasn’t like that at all, fundraising is really, really hard work that takes a lot of time and dedication. I didn’t know that at the start, but I do now. We decided that we would see if I could walk one mile when I could hardly walk at all and get some sponsorship for that. I have always thought that Ludwig Guttmann was an unsung hero. Guttmann was a Jewish doctor who fled Nazi Germany just before the second world war. Guttmann insisted of the inclusion of sports exercise as part of a recovery and rehabilitation with the wounded soldiers from World War two, based in the Stoke Mandeville hospital spinal unit. Guttmann would go on to become the founder of the Paralympic movement at the Stoke Mandeville stadium. So that’s where I would walk my first and probably last mile. So, we know this prestigious venue that I would be walking from but where are we walking to? My local pub of course, surrounded by family, friends and loved ones to toast our victory! It was extremely painful and took about 40 minutes to walk one mile, but we did it and we raised £1000 that day. With the fundraiser, I started this blog and started to write about living with a rare disease, to try to gather some momentum and much-needed awareness. To date I have been lucky enough to have had over half a million hits on this blog and my story has been shared a lot on social media creating a crazy following of people that wanted to help me to help others and it has grown and grown.

The future is and always has been uncertain for me. This disease will one day affect my heart and diaphragm, but nobody knows when that might be, so with that, I live my best life every single day, and I always wake up grateful. My attitude changed as soon as we started fundraising and so did people’s attitudes towards me. Despite my health I consider myself a very lucky man. I have influenced a lot of people to get involved but lots of people have come forward on their own accord and so our events have got bigger and bigger, I seem to have the midas touch and I don’t know who or where that gift came from.

That one mile has led to us walking one mile to many events that we never got round to. Michelle always said every time Wimbledon was on the TV, “I would love to go to Wimbledon one year” and so we did, we did that and so much more! I always wanted to go to the Formula One at Silverstone, so we did. The FA cup final at Wembley, we did that, to walk around Roger Bannisters track, Iffley Road, Oxford, yeah we did that too, to walk one mile to Elland Road to watch Leeds United - completed it mate! The list goes on and on, proving that we can all do far more than we think we can. It was time to stop making excuses for myself like I used to.

Through social media I have met some of the best, friendliest, most loving, caring, and selfless people that you could ever wish to meet. Some have taught me how to write better through reading the work that they do. Communication is imperative if you want that message to go far. Some will send a direct message asking to help or some have sent a message telling me what they’re doing to raise funds without even being asked. Some are professional actors who got involved with my films to raise awareness, a Hollywood actor, no less. There are too many to mention but endorsements are fantastic things and if you can get them, USE THEM. One day a guy called Simon Rix, bassist from the Kaiser Chiefs sent me a message asking if he could help and I said yes, “could you climb Mount Snowdon with us?” He did and it was awesome, we’ve been friends ever since. Our supporters are not all famous though, we have marathon runners, tough mudders, walkers, mountain climbers, three peakers, abseilers, posh dinner dance ball organisers, space hoppers, skydivers you name it and we’ve raised funds doing it. All these fundraisers are the best of us, the selfless ones. But not everyone can fundraise, a childhood friend once came up to me during an event, he’s a physical training instructor. He said, “I can’t take part in an event for you, but I can keep you as fit as possible for as long as possible for free”. I didn’t know at the time, but I needed this more than anything else and I will never be able to thank you enough Gregg, you have saved me physically and psychologically, bless you, life itself is worth much more than gold.

I am a firm believer in the six degrees of separation and as I have mentioned already, we support a football club. Supporting the same club as other people has helped with forming many different contacts but the biggest fundraising event was just about to happen, and I nearly messed it up before it had even begun. I was dragged up on British comedy, I loved growing up listening to the Goon shows, watching Monty Python and stand-up comedy. Imagine my surprise when one day I got a message from Jon Richardson (8 out of 10 cats, Ultimate worrier, Meet the Richardson’s and on and on), Jon asked if we could meet at a Leeds game, and we did. He asked if he could get involved and I said yes, we exchanged numbers. I know my comedy; it would be my subject on Mastermind and Jon Richardson once performed one of the best pieces of comedy at the Hammersmith Apollo. If you haven’t seen it, it’s here – Jon Richardson - Apollo – Jon is a hero of mine, but he must never know this, it’ll go to his head as he doesn’t have many friends.   

Jon called me on a Tuesday night, but I asked if he could call back later as I was watching ‘Saving lives at Sea’ a programme about the fantastic work of the RNLI and I hung up the phone. The scorn from Michelle as I sat back told me everything, it was one of those moments where he (me!) knew he’d messed up, for want of a better, more graphic, word. Luckily for me Jon called back that night at 21:30 and asked how he could help. What could we do together. I just come out with it, as bold as brass… “I would like a BBC Apollo style event at my local theatre, Jon Richardson & Friends, you bring some comedy pals along, about four others, and we blow everyone away whilst raising funds for MDUK”. Silence for about 3 seconds, felt like hours, and he replied “You don’t want much, do you? Sure, I’ll start asking friends in the morning”. WOW! What I had to do next was speak to the amazing Julie Chitty, manager of the Waterside Theatre, Aylesbury. We had a meeting with Julie who was and has since been so accommodating and got us a slot in Q1, 2020. I cannot believe we were going to pull this off, my ultimate fundraising event, a dream come true!

Julie Chitty - Theatre manager and friend for life

Late in 2019, Michelle had suggested that fundraising is what I should be doing for a living, it should be my occupation. So in November 2019 I parted company with the safe Pharma job and went to chase my dream as a full-time fundraiser. We had made a decision between us that I should work for a children’s charity or a mental health charity but first I wanted a bit of a sabbatical, just to rest for a bit and to take time to organise and dedicate my time to the comedy night. In March 2020 the world was shut down due to Covid-19, I was to be shielded for about 18 months. The comedy night was cancelled, to be re-scheduled. Due to shielding and due to isolation in 2020 - I eventually lost the ability to walk, my legs had gone from me and had become too weak to carry me any distance. We had done some great things with these legs of mine but alas the power was gone and during this time I felt ever so sad. I thought I had grown used to muscle loss, living with the progression of my cruel condition but this was a proper punch in the guts. The job hunt wasn’t going well either, nothing in fact. With the loss of power in my legs, I felt powerless in my mind too. I had lost the ability to fundraise too at a time when the charity needed it most with its £2.6 million funding gap due to the pandemic. I felt utterly useless, no good to anyone.  

March 2021, I saw a job advertised on a Charity Job website – Corporate New Business Officer at MDUK. Imagine my surprise as I was a fundraiser for the charity, a volunteer, an advocacy ambassador, and I sat on the appeal board and indeed met the board the day before. Ok, so it’s on me to apply just like everyone else, and rightly so, I love challenge! I was so nervous; this would be the biggest interview on my life. Working for the charity had never crossed my mind before, I mean it’s bloody obvious, but I couldn’t see what was staring me right in the face. I got the job and in April 2021, I started working for MD UK, I really had made it now, I was in the ultimate position to help myself and others. All those years of hard work and graft had got me to where I need to be. I have a vested interest in the work I do daily, and I absolutely love it.

Working 9 to 5!

As the title poses that question, I suppose we had also got back to some of the stark realities of living with a muscles-wasting condition and the next couple of paragraphs will be difficult for me but please stick with me here, I’ll need you more than ever! As far back as I can remember I think I have been lucky enough to not experience any form of discrimination but in recent years I’ve experienced it a few times. The first time was after my family had volunteered at the London Marathon. I was absolutely shattered and Michelle was holding my arm on the escalator on the Tube in London, as we descended to the platform a guy was trying his best to get passed us. Michelle had apologised and explained I was disabled and she was basically being a walking stick and holding me up. As we reached the bottom of the escalator, he rushed passed us to jump on his train, as he did he turned and said, and I must put an emphasis on the quote here as I would never repeat this… “You should have moved, you fucking spastic!”. Initially it broke me, one of my weakest moments in my life. I learned from that though, I have gone on to learn so much more about discrimination and those affected by it. It has given me more strength, resilience, and education against ignorance. We should also never treat ignorance with Ignorance, Bob Marley once said it is a foolish dog that barks at a flying bird and for me that means I did the right thing not to react to that guy on the tube. Another one more recently was at the Natural History Museum, London. I was ahead of my family in my wheelchair, so I decided to stop and wait for them, minding my own business I just sat there, until I felt my chair moving. A guy had grabbed the driving joystick of my wheelchair and drove me out of the way, so his family could pass, for the first time in my life I was speechless, gobsmacked. I told Michelle about this, and she wanted to punch his lights out and insisted that I point him out if I saw him again, I did see him again, but I didn’t point him out for his own safety. Nobody should ever be treated like this, and we need to educate more, this is 2022 not the 1970s. So that’s what I’m trying to do too, to educate and eradicate that behaviour, to be the bigger man.

I have young carers in my life in my daughters Olivia and Skye, they help by putting my shoes and socks on, pull my shirt, jumper, hoody, or coat over my shoulders, help me get in and out of the car, help assemble my wheelchair amongst many other things. Young carers are societies unsung heroes and I’m forever grateful to them. Occasionally I reward those girls of mine and recently on holiday in Devon I wanted to buy them the biggest Ice Cream that I could find but the Ice Cream shop wasn’t accessible for wheelchairs, there were steps into the shop. Now I don’t want to sound ungrateful but this is where we also need education, as we turned to leave to find another shop the owner came and shouting “Don’t go we have a ramp I just need to set it up for you”. He was loud and he was over the top with the attention paid to myself and my wheelchair. The home made ramp was like getting square peg through a round hole, “We’ll get you in there matey” as he pats me on the head with other customers looking on. “Thanks so much but I’ll leave it” I said as we managed to get out of his clutches. Drawing too much attention to people with disabilities is annoying and frustrating. In this case I think silence would have been golden, please by all means try to help with the ramp but don’t bring the excess attention and volume.

Remember at the start of this I said that my older Brother was diagnosed at the same time as me? Well, it’s time to address that and the feelings I have about that now. My older Brother is my hero, my older brother has done so much for me in my life, when we were younger, I got all his hand-me-downs like clothes and toys, but the best things were records and mix tapes. Whenever he and his mates were going on bike rides during the long hot summers, he would always take me with him when other younger siblings got left behind. He bought my first pint in the Steeplechase pub, and I fell backwards off the bar stool. After that we had our first proper Indian meal, my brother and our mate Marc bought my first games console too, there were lots of firsts because of my brother. I witness his progression with Muscular Dystrophy with my own eyes, I’m watching my hero fade away. I’m often upset by this and take moments alone to let out those emotions, driving in the car, lying in bed at night, we all need a time to cry and let out those emotions. I often wonder if there will ever be a treatment or cure during our life and think when we’re fundraising will there be time to save us and then I think that this way of thinking is selfish and those aren’t the reasons why we do what we do when it comes to fundraising. We do it so other people don’t go through all that you’ve read above and more, we have become positive and selfless because of a horrible diagnosis and we shouldn’t think of ourselves. That’s not to say my brother is not always in my thoughts because he is, he gives me more inspiration and determination than anyone else and it’s important to me to recognise that society grows great when old men like me plant trees in whose shade we will never sit.

Back to the title then and the question asked of Michelle by her colleague referring to living with a muscles-wasting condition, “What’s it really like?” well it’s all the above and more. I’ll try to write this metaphorically so hopefully you can understand just slightly, hope this works… It’s like you’re walking down a canal towpath and it’s pouring with rain; I mean totally relentless, and your clothes are soaked through and so heavy. As you’re walking you notice a bicycle in the canal and have this urge to get it out of the canal, you must, it’s massively important. You grab the handlebars and the seat, but it’s stuck fast, with just little movement as your feet are slipping in the mud, it’s so heavy, the heaviest thing you’ve ever had to try to move but it is moving slightly and as your shoulders, arms and thighs are at burning point you get the bike onto the towpath. The bike is filthy and rusted stuck solid, you need to polish it and use WD40 to free up all the cogs and joints until eventually it starts to move again, and the wheels slowly start to rotate. That there is exactly what it feels like to get out of bed every morning, you are instantly exhausted at the very beginning of the day, that’s what it’s really like.

 

How then does a person with a life-limiting, degenerative condition get through all of this? It’s because I always wanted to be the best Dad that I possibly could be despite everything, if anything was to ever happen to me my girls would be able to see that I tried my best, to make sure others see me laughing in the face of adversity and loving life because I do, so sincerely. I’m so lucky to have so many people around me willing to help me help others Happiness and friendship can be found even in the darkest places, sometimes we just need to turn on the light. I really love and rely on music too and all that it brings me, I hear a lot of songs, I don’t just listen, they don’t just hit my ears and make no impression, educated and comforted by Bob Marley, Public Enemy and much more. It might sound soft and cliche but love will get you so far too, ‘in sickness and health’ has been the backbone of my relationship with Michelle, we go through a lot of shite together, but we also have the best of times too, I’m a very lucky man.

I’m just about to wrap things up now with a conclusive paragraph or two, we’re nearly there, well done for sticking with me.

On Sunday March 27^th 2022 Jon Richardson and friends; Marlon Davis, Suzi Ruffell and Harry Hill played the Waterside Theatre in Aylesbury to a sell-out 1,200 crowd. It was one of the best nights of my life and as a fundraising event we raised over £30,000 in one night. I was so proud of everyone and Jon has gone on to be a fantastic friend of mine and I am so grateful We had an opportunity to celebrate that night and be thankful for everyone who has ever done anything to help us. Bless you all, together we have now raised £246,800.00 and the comedy night was a dream of mine that came true.

Living the dream on stage

The uncertainty of a diagnosis, not knowing what the future holds gives me an opportunity to enjoy every single day as if it’s my last, some might say it’s an advantage that I have over other people and I sometimes wish that others had that too because so many of us just float through life. As we get older, we attend more funerals and less marriages or christenings, that’s just life but we must remember that tomorrow is never promised, it’s not a guarantee that we should take for granted.

I had always wanted to fix things, to make things better. Although I always wanted to be a motor vehicle engineer, I do believe I am on the right path in my life now and we don’t say “why me? Why has this happened to me?” anymore, I say, “why not me?”, we have the voice and ability to help others and who knows, maybe one day because of all the hard work of families and friends fundraising there might just be a way of fixing myself.

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!