Don’t forget about ALS

Over the past few weeks, I’ve seen an onslaught of people either dump some varied container of “ice water” over their head or they have had someone else do it for them. When I first saw it, my initial thought was “why?” I couldn’t understand what the significance of the ice water was and why you specifically had to douse yourself in it, but then I remembered that we live in an age where people are doing all kinds of nonsense – absolutely dumb shit in fact, like the fire challenge – and putting it online, all in the name of “fun”, devoid of common sense or direction, so it occurred to me that perhaps there wasn’t a significance to the specifics of how the act was carried out but that the important part quietly resided in the act itself. In spite of this belief, I began to research Amyotrophic lateral sclerosis (ALS) – or as we call it in the UK, Motor Neurone Disease (MND) – because, like many, I had never even heard of it before and a part of me still wondered if the act of ice water being poured over your head was basically a way of getting people to understand, even for a second, what it feels like to have MND. It turns out though, the actual ice bucket challenge has been floating around in the vast Internet ether for quite some time now and it wasn’t actually created for the cause of MND awareness, but it has cleverly been used for just that.

For those who are unaware, ALS (which is also known as Lou Gehrig’s disease in the US) is one of five motor neurone diseases and it is truly a horrific and debilitating illness that results in the active deterioration of the body’s natural functions through neurodegeneration. What this means, is that over a period of time one afflicted with this cruel condition will begin to walk, speak, swallow and breathe. Just, take that in for a moment. Things that we so naturally do every single day, gradually become foreign to us; and, quite possibly the worst part of all is, the fact that it is accompanied by a double-edged sword in the form of surviving brain functionality. While your body begins and continues to fail you, your mind remains in tact and completely aware of everything, which effectively leaves an individual suffering through this condition as prisoners of their own body.

Now, I don’t know anybody who has been a victim of this MND, but I do remember that shortly before the end of his life, my granddad had a second stroke. Here was a man I had known my whole life; a man who, even though he was in a wheelchair since I was roughly two-years-old, never, ever, had any shortage of zest for life. He was perfectly capable of doing everything for himself – with the obvious exception of walking – and he never complained, he was never reliant and he was never, at least as far as I could tell, trapped. Even as I write these words, I can still see the brightness of his smile and the joy in his eyes, as they remain emblazoned into the very fibres of my being and I hear the robust echo of his unmistakable laughter vibrate within my soul and as I begin to move towards the next part of the story, I feel the sting in my sinuses as tears begin to gather like old friends in the corners of my eyes. You see, after the first stroke, my grandfather had very little use of his right arm but aside from that he was still the same person. He needed help now, but he was still fairly capable. We would play card games and watch WWE, tell jokes or just sit in each other’s company as we had always done. But after the second one… everything had changed. I saw something I had never seen before when I looked into his eyes. Sorrow. Desolation. Helplessness. His mind was still alive, he was still completely aware of everything, but he could barely move and I don’t think he uttered any more than 5 words from then until his death. I don’t think I ever saw him smile again. For me, that was extremely painful to endure so I can only imagine what it felt like for him.

So, although it is not the same thing, I have an understanding and complete empathy for the sheer horror and plight of a person who is being betrayed by their body in such a soul dampening manner. But like I said, I had never heard of ALS and the sad truth is, without the emergence of this “ALS Ice Bucket Challenge” phenomenon that has stormed the Internet like wildfire, I may never have known.

It is for this reason, I am completely sick of hearing people complain about the challenge. Don’t get me wrong, I understand that there are a number of people who do the challenge simply for the sake of attention, momentary popularity or just because it is trending right now; I also have noticed that a number of people do the challenge and don’t actually mention what it’s for. I don’t know whether this is because they do not know, or because they are making the assumption that people already know but whatever the case may be, they’re taking some limited part in this cause and I can only hope that each and every person who has published a video of them doing the challenge has also donated. I know that, in just the past week, somewhere in the ball park of $41 million has been raised and that is all thanks to the ice bucket challenge.

As I mentioned, the challenge itself had already been online but – and feel free to correct me if I am wrong here – from my research it would appear as though Pete Frates, a former Boston College baseball player and sufferer of ALS played a major role in the challenge becoming what it is today. He had seen people doing the challenge online and began to encourage people to do it in favour of ALS. This lead to teammates, friends, family, supporters, other celebrities and more taking the challenge and pledging their donations in support of those dealing with ALS and, like a glorious wrecking ball, it has picked up such velocity that it is truly making a huge impact. Pete, although he cannot even move of his own volition, has even participated in the challenge himself with the help of his family.

Now, allow me to play devil’s advocate for a moment because one of the complaints I most frequently hear in regards to the ice bucket challenge, is that it is outshining more pressing and troubling world affairs, and is distracting from things like Israeli-Palestinian conflict and the situation in Ferguson. And I put it to you that, if this ALS ice bucket challenge is essentially a cleverly timed ploy put in place to distract us and avert our eyes from the issues being raised in regards to Mike Brown’s death and the socially accepted inferiority of black lives, does that give any of us the right to condemn a just cause in our own cries for justice? If the government, the powers-that-be, the illuminati or any of the other “big bads” in this world are actually giving us a big red lollipop to keep our attention averted from the needle they are forcing through our skin, does complaining about it change anything? Does disregarding this cause or refusing to participate change it? Of course not. If you think that this is all just somebodies attempt to make the vast majority of us stop paying attention, then instead of dismissively showing the middle finger to those who are affected by ALS, why not put your energies into making sure that people do not forget?

The fact is this; it should not take a viral challenge to make people donate. There are thousands of charities out there and there are millions of people who donate to one, or more, every single month. I donate to Cancer Research and that doesn’t mean that I think the other charities out there aren’t worth supporting, but the reality is we can’t all afford to donate to every single charity going. People have the tendency to pick the one(s) that mean the most to them because of how that particular condition, illness etc. has affected their lives in one way or another. So, in actual fact, the emergence of something like this is really valuable because it brings to light something that we may otherwise have never known about. And, sure, ideally it wouldn’t take that same challenge to be the cause of people’s awareness about something so terrible but the reality is, there are A LOT of things that go on in this world that many of us will never know about until it is brought to our attention because most of us are not in the habit of just going out in search of information and even those who are, will have a hard time finding anything if they don’t know what it is they’re looking for.

We live in a world where one must be present and active all the time if they want for anything to happen, because things are happening everywhere and the global attention span is something akin to a child who has just been introduced to a room full of toys. We see the new thing and we rally behind it… for all of five-minutes, until we catch sight of the new thing. Do you remember #BringBackOurGirls? Flight MH370? Where are those girls now? Are we still accepting that planes are just disappearing? A whole fucking plane? People are interested in things while they’re current but the moment something more exciting comes along, the focus is shifted and if you want to ensure something remains current then you as an individual have to take responsibility for that and guarantee you, that complaining about it if you’re not going to do anything about it means absolutely, nothing at all. So before you sit there and complain, just stop for a minute. Calm down. Stop condemning something that is actually doing a lot of good – because every time you complain about it and compare the Mike Brown/Ferguson situation to the ALS Ice Bucket Challenge, you are essentially suggestion that people should forget about ALS victims because, somehow, Mike Brown and/or black people are more important. Sorry to break it to you, but this just is not the case. Neither one is more or less important than the other and the attitude of many, seems to suggest that we cannot do something about both; as if there has to be a choice between the two.

Knowledge and education of a particular thing, alongside the initial awareness of that thing, are paramount first steps in making a resonating difference. You may feel as though your cause is going unheard, that your struggle, your charity is being overshadowed – if it is even being paid attention to at all – but if you are not going to do anything about that then that is how it will remain, and it would be wise if you spent your energy bringing your particular issue to light as opposed to chastising the efforts of those who are actually taking part in the active presence of life. If you want it, you must be prepared to – [quick fun fact, Gandhi didn’t say this] – “Be the change you wish to see in the world.” It begins and ends with you.

Jack