Life is a Roller Coaster - Part Two: That There London

Now then where was I? Ah yes, just got home from hospital and saw The Mighty Reds stuff Liverpool at Anfield. Just thought I’d drop that in again. I suppose most people in my position would have some time to relax at home and fully recover from a two week hospital stay. Not me unfortunately, I have less than 72 hours before I have to head down to London for the Go Cardless (Corporate partnerships and donations welcome) Just Giving Awards. 

From the early days of my diagnosis, if I’ve had a reason to head to the big smoke, I have tried to stay down and turn the trip into something of a city break. It would be fair to say that as time has passed this has become a more challenging endeavour, physically and logistically. 

This trip was planned for six days. Arrive in London on Tuesday, award show Wednesday, F1 Exhibition at the Excel on Friday, Brighton on Sunday for Forest, back home on Monday. Simples…

Packing for these trips has become something of a military operation. Of course it’s difficult for me to contribute, but I do my best with getting everything booked online and curating the packing list. I have found that apartment hotels work best, it means that my live-in carer and day carer can stay with me, and by hiring a hospital bed we can pretty accurately replicate my home set up when away. 

It’s really difficult to have completely controlled the organisation of something and then when it comes to the day of action, have to completely leave it in the hands of others. It’s one of the few times I feel genuinely limited and easily frustrated. I have to try and go into my own little world and ignore everything around me. I've done all I can to influence what happens, there are no more controllables to control. I have to thank triathlon for this skill, getting stressed about external stuff is a complete waste of energy during a race so I learned not to think about it over the years. If you have ever seen a film called ‘Bridge of Spies’ just think to yourself, “would it help?” 

The journey to London goes amazingly smoothly. I even get some sleep in the van which is very rare these days. We are staying somewhere new to us which has five star facilities (a couple of notable exceptions) and unfortunately as we are about to find out, a two star attitude.

We get checked in and face challenge number one: the lift. Quite often if staying somewhere new I will get in touch to confirm lift dimensions before I book, but this place is advertised as fully accessible throughout, and nobody in advertising ever massages the truth do they… 

I have gotten quite good at judging lift sizes by eye. As the doors to this disaster slide open I am genuinely concerned it isn’t going to work. You can cover the walls in mirrors to calm the claustrophobes and excite the vain, but it ain’t gonna stop my toes from getting crushed sunshine. The lift doors have the patience of an uncooperative jobsworth traffic warden with a superiority complex. You either get in within five seconds or you can do one mate. 

We eventually squeeze me in by removing my shoes and foot plates, taking the ventilator off the back of my chair and putting it on my knee, and pushing the backrest of the chair into its most up right position. Essentially squashing me into a decent physical impression of Tom Daley doing a reverse 4 ½ in tuck, except he doesn’t have to wedge his breathing apparatus under his chin. Welcome to Dignityville… 

The two star staff are spectacularly unhelpful in a trend that would continue for the next week, as you will hear. 

To be fair, lift issues aren’t uncommon, I can only recall using three lifts in the last five years that were actually big enough. Two at football stadiums and one at the most eye wateringly expensive NCP car park in the western hemisphere. Seriously I think if you’re planning on parking for more than 4 hours you have to leave your soul as a deposit. 

Anyway, tangent, sorry. We get some other issues sorted despite receiving almost zero assistance, I manage a really good night's sleep and before I know it it’s time to get me suited and booted for the awards. I’ve bought myself a beautiful suit and some banging blue suede shoes. The suit has been specially tailored for me by an amazing organisation called Dressability. I haven’t put an outfit like this on for years and it feels genuinely amazing. 

We head to the Roundhouse in Camden for the ceremony. I have been here once before. About six months before my diagnosis I was here to see Thom Yorke perform a stunning show with my incredible friend Richard. I see the bar where we drank with our fellow pretentious music fans and hipsters before that show. I remember telling him about all the strange symptoms I was experiencing and laughing it off as always. There is a poignancy in being back here. Mostly I think about how fortunate I am to have a mate like him, he’s been a powerful constant to me for thirty years. Thanks mate. 

The venue looks very different tonight, everyone looks amazing, far fewer people with their modern take on an Edwardian Cricketers beard than at my last visit. I’m here with Emma, my Mum and Dad, my Sisters, my other incredible lifelong friend Ally, our patron and my friend Chrissie Wellington OBE and of course my incredible carers. 

I see some famous faces around the room and some other nominees I recognise. Rylan Clark is hosting and does a brilliant job of energising the room. He also talks about the nominees, using very emotive and powerful words to describe us. It’s incredibly surreal to be talked about in that way. I have a bit of impostor syndrome. I know what I have done is unusual but it seems normal to me. Still, as ever I’m bloody loving the attention! 

The awards are staggered between the courses of the meal and my category is due to be announced after the main course. Without being presumptuous I make sure I’ve been to the loo. I also have a really good catch up with Chrissie. We have become genuine friends and it is lovely to see and talk to her, it’s incredible that our emotional experiences overlap in some ways. Just another crazy consequence of this journey.

Ed Slater pops over to say hello. He’s in his wheelchair and his speech is becoming slurred. It’s a dark and noisy room which makes conversation between the two of us difficult. He seems like a genuinely lovely person and I make a mental note to get to know him better. 

I’m not feeling brilliant and as the main course is served I let my carers know that I need to have a cough. We are led by a member of the extremely helpful (5 star) event staff into the backstage area for some privacy. It’s close to the medical staff and some performers who will be entertaining us later. As we arrive there is the general murmur of chatter and laughter. 

It’s not an easy cough. The secretions are thick, sticky and difficult to get moving. I need some pretty aggressive chest physio to get it out. When it does arrive it’s coloured and tastes foul which is not a good sign for the state of my chest.  It’s very quiet in our area all of a sudden… I have some paracetamol and get ready to go back into the ceremony. 

The main course is cleared away and Rylan introduces Sunetra Sarker to present the Outstanding Commitment award, my category. The nominees are announced and then our videos are played. It’s the first time I have seen mine and I am amazed with the piece the production company put together. It captures the story of me and Stand Against MND perfectly. See for yourself.

My fellow nominees are incredible people. They have very different motivations and causes, have raised different amounts, but share an incredible unshakable determination to make a difference. Please have a look at their nominee videos below.

After the video the moment of truth arrives and Sunetra steps forward to announce the winner. I have put a lot of work in to try my best to win and people around me have been really confident that I will. As this moment has approached I’ve become increasingly unsure and nervous, the other nominees are so deserving and I have no confidence. 

My name is announced as the winner and it feels like the entire room cheers and rises to its feet. I’m surrounded by my jubilant family and camera lenses. I’m in shock and my only focus is on not crying - for two reasons: firstly because crying on a ventilator gets messy quickly and secondly because I am one of the unfortunate MND sufferers whose illness has caused ‘acid tears.’ A side effect which causes my tear ducts to over produce Ammonia creating teardrops that literally burn my eyes and skin, thanks MND. 

Emma drives me to the stage where I am greeted by Sunetra and Rylan. They do an awesome job of welcoming me and congratulating me despite the fact that I cannot reply. It’s a frustrating feeling but one that I’m used to, more upsetting is my inability to facially express my joy and surprise. MND really does try and take everything from you, it will never get my thoughts though.  

I recorded an acceptance speech a few days in advance in case I won. I think it is the longest of the night (typical) and I think it conveys my personality. I give Rylan a little wink to let him know when it’s ended. 

I am taken off stage and go straight for official photos with Sunetra. She is incredibly nice, extremely helpful and amazed by my eye gaze tech, which I use for a few words while I am doing photos. I am then able to go and see the family and share some lovely moments with them, really special and incredible memories. 

The rest of the awards pass in a bit of a blur until we are all invited onto the stage for a final photo op. I pass and say hello to Charlotte Hawkins (MNDA patron) who I met after this year's London Marathon. She has just presented the special recognition award to Lindsay Burrow who is accepting it on Rob’s behalf. The last time I saw Lindsay was at the Leeds Marathon in 2023, we share a glance of acknowledgement and it's another stark reminder of the brutality of this disease. We have so much to thank Rob and his family for. 

After the ceremony closes a great band plays a few songs and I insist we all take to the floor for a boogie. I join in by twitching my shoulders and singing along with my eye gaze. Ally's moves have lost none of their mojo, it’s great to be amongst it all, Emma makes me laugh constantly. It’s the perfect close to a very special night. 

One more Tom Daley impression then sleep. Amazing day. 

It would be remiss of me to sign off without a few notable thank yous. Jonny Owen, Vicky McClure MBE, Chrissie Wellington OBE, Joe Worral and Nottingham Forest FC for their high profile support and encouraging their followers to vote. Thanks to you all. 

The biggest thank you of course has to go to everyone who voted, shared and pestered all of their friends and family to do the same. It is a momentous step in the Stand Against MND story and another moment that helps in the fight for MND awareness. 

Most importantly for me though is from myself and my family, you gave us an evening of pure joy and excitement. MND doesn’t leave many opportunities for nights like that, and I understand better than most how important they are. Thank you from the depths of my heart. 

As always, thanks for reading. Shares and comments hugely appreciated

Sam x