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


An awesome read Sam- sending you lots of love
We find a cure- there will be no finish line 💙👍

Helen Barber

Sam I’ve got to know you in the last few years with your connection to our Greg. We travelled to London last year and we had a great day cheering you on. So pleased you made it to the finishing line this year. We love seeing you up the golf club for Quizgo and we try so hard to win so we can give the winnings to MND. Sadly its only happened a couple of times.
Your blogs are brilliant but at the same time very emotional. You are a natural writer and I think you empower not only yourself but your reader to count our blessings whatever they are.

Lyn Warren

Sam you are an inspiration to charities , Friends and families and the people around you. Your positivity in life is amazing and you keep going. I see you at Forest with your dad and you are always passionate about forest and always support them win loose or draw. Your charity work for MND should be commended and knighted. Keep going and keep blogging #Not All Hero Were Capes.

Adam Zurawliw

Sam, you are truly remarkable and an absolute kick up the arse to us all!
Your eloquence is to be absolutely admired and your positivity and strength a lesson we should all take dearly xx

Heather Tormey

Go Samantha!!! You truly are amazing. Don’t know how you do it… we all take life for granted, each time we wake up, to closing our eyes at night. It’s still so surreal that you have to cope with MND, but one things for sure, you definitely do not take life for granted. I’m so proud of you & all that you have achieved.
A hard read, but truly inspiring. Love you mate xx

Lindsay Wright

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