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.”