Where's your head at?

Where's your head at?

Life goes on doesn't it? For a while anyway.

I think I feel compelled to write today following my counselling session a few days ago. It was the second session I've had since London. Whilst the first was full of euphoria about the achievement of the Marathon, and excitement about ideas for the future: last week was all about reflection. It's starting to properly sink in now and it really has brought up some unexpected emotions.

Listening to Elbow today by the way, because I'm going to see them on Friday. I guess that means you should expect my attempts at profound statements conveyed through flippant wordplay... we'll see how that works out I suppose. I've turned on blog comments so feel free to tell me to stop being a knob if it gets too much.

I've done things in my life before which have filled me with enormous pride. When I've set myself a challenge or goal which at first seems overwhelming but then found a way to achieve it. I've by no means always been successful, but dealing with those moments is a whole different matter.

The aftermath of the successes is quite predictable. Elation, pride, celebration, reflection, emptiness, now what? Of course I knew that before taking on London and had decided to focus much more on the pride this time. Not just my pride related to London but pride in all my achievements both before and after MND.

Pride has a bad reputation I think, it's both a precursor to falling and deadly apparently. I quite like feeling good about myself and giving myself the occasional pat on the back, so I'll take the chance and big myself up for a bit. Can't really fall anymore anyway, and I eat the threat of death for breakfast (through my RIG obviously).

MND presents some really specific challenges when it comes to my normal post-achievement process. How do you celebrate when you can't move, struggle to speak, can't eat or drink... what's left? I end up being surrounded by others celebrating my achievements, but feeling heartbreakingly unable to participate in the ways that I would like to.

It's very difficult for me to write like this because I always try to be so positive and take the most from life, but to deny the pain that MND causes would be wrong. The biggest challenge in my life is to accept that pain and get on with the things that bring me joy, and to realise how many joyful things remain. Lastly to remind myself how lucky I am to be here, and how lucky I am to have the people who help me to enjoy life, and the technology to extract every drop of joy available.

Another challenge I face is to know that I have done things for the final time.

I'm not going to list them here because that would be far too much sadness for us both, and if you've read my blogs you'll know I much prefer to spread a bit of joy. Just rest assured I don't focus on the finality, I think about how lucky I am that it happened, even if it was for the final time.

I'm so grateful that I have filled my life with so much purpose through the Charity. I don't think it's possible for me to feel emptiness of purpose anymore.

So what next? Ha! I've been asked that one a couple or three times in the last two weeks. Let's just say I'm not short of ideas, the chair is in the garage itching to be of use, I'm as positive as ever, and I still have the best support in the world.

In fact when I asked Chrissie about the most ambitious of my ideas she of course said YES! and then:

"I am here to facilitate you realising your dreams, and being the legs, heart, lungs and arms when you can no longer call on yours"

With support like that, how could I ever think about giving up my Stand Against MND. 

If you feel inspired to help us fund more vital research, you can donate here.

Thank you so much for reading.

Sam x


So genuine and honest. No matter how positive and determined you are, you are so right to be honest and remind people of the things MND takes away from you, you are allowed to have low feelings at times and you are allowed to tell people so, it’s part of your journey and your story. I love how honest you are and you are right to sit back and take pride in what you have achieved. I lost my cousin to MND in 2021, my Dad was diagnosed last July but it took 19 months to get a referral to a neurologist, so we know he has had it for over 2 years, that scares the hell out of me because he has lost 2 cousins and a nephew to it and they went within 3 years. Keep doing as much as you can with that determination and amazing support you have. You are awesome Sam!!! Xx

Caroline Cassidy

Sam, you will never give up it’s not in your ethos, however I also feel you’re not in a fight, or a battle. You are living, and taking each new day as it comes. You are wonderful and an inspiration to us all, keep blogging, you’re pretty good at it 😜 xxxx

Hayley Holroyd

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