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.