I don’t tend to jump on bandwagons, but this is a bit different. I am posting this for a rather different reason. It is a little longer than usual, but I hope you will bear with me… with us, my son and me.
It isn’t that I don’t own a TV. I just don’t watch it. Can’t, in fact, as it is not connected to anything that gets a signal. I don’t get the newspapers, just keep up with the main news online and I seldom listen to the radio either. So I missed all the initial hype about the ice-bucket challenge and the current interest in ALS (MND as it is known in the UK) that it was raising until an email landed in my inbox.
There was a link to a video and a single line from my son;
“I can REALLY relate to this guy, makes me SO grateful for what I have! x”
Let me show you why.
We talked about it next morning as we were making breakfast in his kitchen, at his home, where the progress Nick has made since that video was filmed by the local newspaper has been incredible. Nick still faces many physical problems with his sight, balance and mobility, but the difference between this film, made a year after the attack, and the laughing, articulate and talented young man today is unbelievable. You wouldn’t recognise him. Nor would you ever know how much sheer, bloody-minded, stubborn determination, how much effort, how much time or how many tears have gone into achieving that.
I asked Nick if I could write about our conversation and he agreed. I tentatively asked if I could include the video clip, knowing how it had made him feel to see himself like that, knowing the journalists had been gentle with their editing and not shown the worst by any means. He agreed to that too and told me why. Nick had felt nothing but horror and utter shame watching the video and that had motivated him to do something about it.
Discharged from hospital to my care he had taken over my bedroom and pretty much all of his time, ten, sixteen hours a day, was devoted to exercise. From struggling to see large print books from which he practiced the tongue twisting verse to try and improve his speech, to the weights, the balancing, the cardio and core exercises… and the ‘simple’ things we all take for granted every day that had to be relearned against all the odds and a lingering paralysis. It never, ever stopped. He spent 18 months living like that, confined by his self-consciousness, his shame at being, and I quote, so ‘fucked up’, while we slept on the floor downstairs.
It was as near to privacy, the closest to independence, as it seemed my son would ever get. There was so little he could do for himself, he relied on me for pretty much everything. Not through choice… he simply had no choice. It was no life for him. Not much of a life for any of those concerned by all normal standards, but it was life and it had come so very close to death.
He had seen the video of Michael Winston, a young man of 24 who had been diagnosed with ALS in 2008. He and my son were the same age. Nick was 25 in 2009 when he was stabbed through the brain. Mike’s story had moved Nick deeply and he and I were both emotional as we talked. Nick could empathise with Mike; in many ways he had been in his position, knowing for himself how it feels to be hoisted in and out of bed, to be dependent on nursing staff for every need, to be locked in a mind that could not make the body function; even communication had been taken from him until he got the alphabet board.
There was one crucial difference. There was a chance Nick could improve. At that point it was more than a chance, in his own mind at least, there could be no question… he had not accepted, would not accept that the damage might be permanent, and every day we found a minor improvement somewhere. Nick, you see, in spite of the dire prognosis we were given, had hope.
Mike says at one point in the video, “Other than my voice, there is not much left that can be taken away.”
I could see the pain in my son’s eyes… the compassion of genuine understanding, at least in part, as he spoke of Mike Winston and the torture he, and others fighting that disease, must have felt. I thought about one of the first things he had laboriously spelled out on the alphabet board with a shaky, imprecise hand, “For the first few nights I thought about dying, it was all too much. That’s why I said goodbye.”
How much worse, he said, must it be for someone whose mind is aware, trapped in a body that slowly ceases to function, when even the ability to communicate is taken from them and all the while there is the utter and certain knowledge that they will not get better. That their future will be a slow and inevitable descent into immobility and death. That there is no hope.
Michael Winston died on September 1, 2013 aged 29. My heart goes out to those who loved him as this date approaches once more.
I am not asking that anyone douses themselves in iced water, or even puts their hand in their wallet and donates to a charity. I am writing to raise awareness for not just ALS, but for all the individuals and their families who face these heart wrenching, gut-twisting situations.
I am writing to ask, as my son did, if you have stopped to take stock of all that you do have, all that you can do, or could do if you chose; of all the little things you take for granted every day… even something as small as scratching an itch or smiling at a loved one. There are many degenerative diseases, accidents, incidents that could take these things from any one of us at any moment. From me, from you, from our children. At the very best, old age, if we are lucky enough to reach it, will take away some of those things we can do as part of the natural process of life.
Nick wrote last year, “It is very easy to focus on what you’ve lost. I could say that I lost a highly paid job in which I excelled, a nice flat, nice car and was able bodied. Instead, I focus on what I’ve gained. This ordeal has completely realigned my priorities in life. Before I took everything for granted, so what I had I didn’t appreciate. They say “you don’t know what you’ve got until it’s gone”. How true that is. I kick myself for wasting the things that I had. So I urge you, go out for a walk and breathe in the air outside, appreciate the fact that you can. My ramblings will still be here when you get back, but tomorrow you may not physically be able to. Like my tattoo says, “possum ergo facit”, Latin for “I can therefore I do”. Please heed these words, I learned them the hard way.”
Sue Vincent's Daily Echo 
Dear Sue (and Nick!),
First I smiled because I sensed courage and possibility in your unfolding story. Then, as I read and learned more about you, Nick, I cried. I won’t elaborate but I twice said goodbye, once in December 1988 and again, in December 1998. I had lost hope. And then I read a glimpse into your life and story and I realize that it *is* hope and self-belief that have driven my will to live and to contribute to humankind in whatever small way I can. Each of us has both a burden to bear and a life purpose. And there exists an abundance in between — challenges, love, awareness, trust, possibilities, and so much more.
I am a physically fragile being. Yet what offsets my fragility is an (dare I say) enviable inner strength and desire to live, to live life as fully as I am able. I am blessed in other ways, as I sense both of you are.
I could write and share pages. I’ll simply conclude by sending and sharing endless love and light to and for both of you. Thank you for your strength, outlook, and openness to creating awareness, through your thoughts, for others.
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Thank you, Eric. I have passed your message along to my son also. These hard times have a lot to teach us and I agree with you, each of us has a purpose and something unique to bring to the world and no matter how small that may seem to us, it may make all the difference to someone, someday.
Everything has something to teach us, every part of the path holds gifts, even if they are hidden for a while.
Love and Light to you also.
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I know you are so proud of him, as a mother should be, and I have to admit I cried in parts of this because I know the trauma the poor mas has seen at the selfish act of another’s hands. You have built a strong son Sue, he is my hero. Where I would have been weak and needy he has the strength of giants. Thank you for sharing this with me, it was a great reminder about life but also a lesson on how to actually live a life. ❤ hug you so close.
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You can’t know how you would have been… we none of us can. It really is unimaginable until you get there… and you might just have surprised yourself 🙂
I’m pround of the pair of them. Both my sons handled this with strength and grace.
Thank you Cao.. I’ll pass this along to Nick too x
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Life can turn on a dime, a moment, a breath. We have lost friends to ALS, others to cancer, heart problems, accident, and violence. The horror of those diseases that gradually steal your humanity and offer no hope of getting better is the stuff of nightmares. While I know I’m never going to get a lot better, I at least know — with even a little bit of luck — I won’t get much worse. That’s no small thing.
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Sadly, so have we, including my late partner to a cancer that eventually affected his brain. To watch someone’s personality fade is a dreadful and heartbreaking thing when you know they too are aware of it.
My son knows his physical recovery may be limited now, but that isn’t going to stop him living.You are right, it is a big thing to know that worse is not on the cards.
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Reblogged this on theINFP and commented:
Nick’s story is an inspiration on so many levels
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Reblogged this on novaratorino and commented:
http://www.gigroup.it
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You both are AMAZING!! I can only imagine the frustration Nick faced and is facing. What an inspiration and what a reality check! Like someone above said, life can change or go out in a second. I will add you both to my list of prayers!! Big hugs to you both for what you do!!
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Thank you Ellen, I will pass that on to Nick. It certainly brought home how suddenly normality can change.x
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Sue, this is very moving, and I admire both Nick and yourself for producing it. I feel for you both, and I have some idea of the emotions involved as I lost a son. I wish you both, and your other son, all the best – and if Nick has any further thoughts about photography, I’ll be glad to hear from him if that’s what he would like to do.
I think that your final paragraph, Nick’s words, embody fundamental and vast truths: “you don’t know what you’ve got until it’s gone”. And, equally, what we can do today we may not be able to do tomorrow – a very wise and solid point. Adrian
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Thank you Adrian. I have great pride in and respect for both my sons.
Nick continues with the photography, though at present most of his time is spent in the kitchen.
That final paragraph from Nick says it all for me.
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Thank you, Sue, Nick, and Mike, for reminding me of so many important things. May life continue to get better for Nick and you, Sue.
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Thank you, Russ.
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Sue, this is so moving. None of us know what tomorrow will bring. Nick is an inspiration.
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A second can change the course of so many lives… and we take our normality for granted.
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Every second of every day, until something jars us into a new reality.
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Then you never take it for granted again.
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Nope. Never.
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Deeply moving tale Sue. Px
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Mike’s story touched us both deeply, Paul. x
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