21/01/2024 - 'The Rockbiter' by David

The Rockbiter: (holding up his hands)

They look like big, good, strong hands, don't they? I always thought that was what they were. Oh, my little friends... the little man with his racing snail, the Nighthob, even the stupid bat. I couldn't hold on to them. The Nothing pulled them right out of my hands. I failed.

Atreyu: No, you didn't fail. I'm the one who failed. I'm the one who was chosen to stop the Nothing. But I lost the Auryn, I can't find my luckdragon, so I won't be able to get beyond the boundaries of Fantasia! (A crash is heard)

Rockbiter: Listen, the Nothing will be here in a minute, I will just sit here, and let it take me away too. (Holds up his hands again) They look like good strong hands don't they? (Atreyu nods sadly)

Along with one of the saddest moments in film history, when Atreyu loses his horse Artax in the swamp of sadness, and one the cutest moments when Falkor, the luckdragon asks Atreyu to scratch him behind his ear, maybe the most heart wrenchingly real moment in the fantasy film The Neverending Story, is when the Rockbiter realises he can no longer protect his friends and he sadly, resigns his fate to others to protect him.

My life isn't a film, or a fantasy, but it is still, no less sad or dramatic, and over the next few months, and years, I will have to sit on the bed, or at the dinner table, and even on the toilet, and let my Alice, assist me, look after me, and protect me. 

This week, like every week, was filled with all the emotions - smiles, tears, elation and abject sadness. 

After my percussive antics on stage last Saturday, my poor little paws have been the weakest they have felt so far and I struggled to even write my name on a form.  I can only hope that this progression is temporary, or slow, rather than permanent. I realise that I won't be playing music for much longer, and at the moment we only have one more gig planned. 

I spent Monday and Tuesday relaxing, reading, snoozing, playing records, soaking in the tub, and watching a bit of telly. Infact, I didn’t leave the house as my legs and hands were aching.

On Wednesday, we celebrated 6 months since my motor neurone disease diagnosis, and when I say we celebrated, I really do mean just that. Obviously, I wish MND didn't exist, but since being told on July 17th, that I'm going to die, I have appraised and assessed my life up until now, and have made a plan to do as much as I can in my time left. As such, I see beauty in everyone and everything and I love my life. 

Alice and I went out on a date night on a freezing night in Southampton, and after a meal at Wagamama, we went to Heartbreakers, the scene of my gig last week, to their midweek Psych Presents night. The 3 artists, Jimmy Herrity, Owen Vincent (featuring our friend Jacob), and the headliner from Australia, J Mahon, were all really good.

The day after, we travelled over to the island for one of the saddest days when my nephew Frankie was laid to rest. He died far too young, aged just 29, and the outpouring of grief and love from family and friends was palpable at the packed crematorium. The amount of good looking, stylish, supple skinned, twenty-somethings, was testament to how loved he was, but also, to how his life was cut so tragically short.

He was a gentle, kind, funny, troubled, sensitive soul, and the tributes, beautifully delivered by his friends and cousins, had us all laughing and crying. His many friends from school, swimming and music listened to his antics growing up, his love towards others, his poetry, and his bad jokes, interspersed with music from the Beatles, the Beach Boys, and two of the many bands that he played in, Frankily, and Xockha. His stage gear was a turtle neck jumper, black jeans, and a pair of Adidas trainers - a man after my own heart!

I wore one of my dad's ties, with an Xockha badge on my lapel. We've had two sad family bereavements recently, but whereas my dad's was in some ways, with his dementia, a blessing at 89, this passing was far too soon. I can only imagine my brother Rich's pain.  Fly high Frankie, and let your smile light up the sky x

We ended the week with a lovely weekend spa break in the New Forest. My work colleagues were very generous with my retirement gift, which meant that Alice and I could have 2 nights, with dinner, breakfast, spa passes and two treatments each! We have both been through too much in the last 6 months, and this was a much needed break from the real world. 

We had been looking forward to just switching off, relaxing and de-stressing for a few weeks now, but it didn't get off to a good start. We were shown into our room and I fancied a hot bath before dinner. With the bubbles and the water rising, I lay back with a cup of coffee in hand when suddenly there was a bang and water started spurting out from the shower housings, spraying water all over me, my coffee, and onto the bathroom floor! Alice heard my shouts, and came running, thinking I had slipped, to find water going everywhere. We phoned reception and as I dried myself, a guy and a lady came very promptly and immediately told us that a pipe had burst and we needed to move rooms. Half an hour later, we are in another room, I'm in another bath, and I'm finally relaxing with another coffee. 

The rest of the weekend was incident free, and was everything we wanted it to be. The bed was so comfy, the food was lovely, the spa was relaxing, and the treatments were amazing. 

We enjoyed a lovely vegan and gluten free cream tea in our room, which had arrived in the post before we left the house, courtesy of our fellow Vegan Runner Charlotte W, who I once ran the Southampton marathon with. It was a lovely gift, gratefully received and devoured. 

You won't be surprised to know that we nipped out early on Saturday morning to Lymington parkrun which was just 6 minutes away. We were back at the hotel in time for breakfast. We ran/walked the course in 46.12 and came last (apart from the volunteer tail walker), but we really enjoyed the fresh sunny air, the wonderful volunteers, and the many kind shout outs from runners as they overtook us on the 3 lap course. We actually said that we enjoyed coming last, as it proves just how difficult running with MND is, and it is our mission to promote awareness of the condition to everyone. I even got to meet and have my photo taken with the Mayor of Lymington & Pennington Jack Davies, who was a lovely chap. 

I went swimming in the pool, the first time since my diagnosis, and I have to tell you that I'm not going to make the Olympic team this Summer. I could swim a slow breast stroke, but my arms were so weak that doggy paddle was much easier. All very disappointing when I think about when I used to be able swim length after length, while in training for triathlons.

We returned to Southampton totally relaxed and refreshed to find the contracts for the house purchase were waiting for us on the doormat.  We signed everything so are hopeful of exchanging very soon.  And that's where this week's story ends but get ready for more scintillating spa talk soon as we have also been gifted a voucher for a hotel that is on my bucket list. 

In other MND news, it was heartwarming to see Rob Burrow and Kevin Sinfield receive their CBE's from Prince William at Headingley Stadium in Leeds, where they both used to play their rugby, in front of Rob's wife and children.

The pair have raised over £15 million since Rob's diagnosis in 2019. Just as important to people like me, is the awareness of MND that they have highlighted and help bring this disease into the mainstream media. Well done chaps.