This is my Ice Bucket Challenge, where people post videos of themselves pouring ice cold water over themselves to raise awareness for ALS and then nominate friends to do the same. I nominate myself, and my challenge comes without the ice water and without a video. It still comes with a feeling of dread and my own kind of nomination. There is penance in it, too.
I was born with a motor neurone disease like ALS, and I often describe it to those who ask about my condition by saying “Do you know ALS? Well I have a very slow and weak version of it.” And while the medical profession might raise it’s disinfected and gloved hands at that description, for the curious layman this explains it well.
Since I came into my twenties I have spend many months in hospitals. There is no cure, but you do what you can with physical therapy. I am also a member of a self-help group of people with muscular diseases. It was in those places that I met many of the brave and gentle souls that lived with ALS.
I make it my Ice Bucket Challenge to tell their stories.
1) The Lovers
There was this tall and proud man who came with his wife to the restaurant where our self-help group met monthly. He was walking with a cane, and he smiled and laughed a lot. When they introduced themselves he said that he had just recently been diagnosed with ALS. The room instantly became quiet, because there is really nothing that you can say in a moment like this. He kept smiling and telling his story, all the while holding the hand of his wife. He spoke of how he came to accept his diagnosis and decided to enjoy his last years with the love of his life. Ah tear came to his eyes as he closed: his only pain is knowing that his wife will have to live through his loss, and that he’s the one who get’s off easy. Soon she will have to take care of him around the clock, and watch him wither away and die.
This was the only time that I saw this man. I was living too far away to attend those meetings regularly. The next time I met his wife there, maybe a year or two later, he was no longer able to leave his bed, needed constant care and was on a breathing apparatus. She said that he’s still able to talk a little bit at a time, and showed us a photo of him: he was leaning on a brick wall with an old metal fence, his cane next to him. It was taken shortly after I had met him, and they were travelling to all the places he wanted to see while he was still able to. And while she sat with us eating her meal, she mentioned how grateful she was for this short reprieve of getting out of the house for this brief dinner. For the past months she had done nothing else than care for him around the clock, and missed talking to other people. She had hired a nurse for the short hour that she was with us, and already felt guilty for leaving her loved one with a stranger for so long.
The last time I met her was when she came to tell of his death. It had been his birthday, and it took all his strength to blow out the candles on his cake. When his wife then asked what he wanted to do now, he put on an impish smile and said: “Now we dance.” At that time he was no more than bones and skin. He told her to put his arms around her neck for him, and then grab and lift him by the top of his pants. That way she held him, and they danced through the room to the sound of music one last time.
When she put him down again on his bed, they talked for a little while about the many blessings that they had in their life. After a while he looked at her and said that he wanted to go now and asked if this was ok for her. She leaned over him, kissed his cheek and whispered in his ear that it was ok, that he can go. He died a few breaths later.
2) The giant with the tote bag
I was often in hospital for intensive physiotherapy. Up to two months a year. All the patients there where given a simple brown tote bag with the hospitals logo printed on. Many of us used this to carry their towels, training plans and room keys from one session to the next. In a weird way – I guess being confined to a hospital for weeks makes you pay attention to such details – the way you carried your bag said a lot about your outlook in life. Wether it was carried over the shoulder like a fashion item, swung energetically from one hand as you walked through the long corridors, or crammed together in a tightly held fist clutched to the chest, as if the grim reaper would first have to go through the patients meagre belongings before he could get to them. Often it was attached to the back of electric wheelchairs, and waved like a flag as those raced around the corners.
During one of my stays, there was this one man, a veritable giant of middle age. His hair was short and just beginning to go grey, and his face carried this kind of stubble that made you wonder if he was trying to grow a beard or merely thought that shaving once a week was more than enough. What made him stand out even more than his towering height was his body language. It was as if the most extreme gradient of confidence went from the soles of his feet to the tip of his head. The higher up on this man you looked, the less confident he seemed. While he stomped through the hospital on wide strides that looked as if nothing short of a very determined brick wall could stop him, his back was bent and his shoulders hunched forward. His arms dangled limply down his sides and his head always looked down on his feet, his face almost parallel to the floor. If he was taking anti-depressants, then the dose was just strong enough to supply his legs, and then the effect petered off. On top of that, he always had the tote bag around his neck, hanging down his chest. He looked like a 6 foot tall kindergarden kid who was just bullied out of his lunch.
Here is the part of the story I still feel ashamed of even today: he drove me nuts. Whenever I saw him, I got angry. Don’t get me wrong – I stayed polite, I said hi, I chit-chatted with him when we were waiting outside the same therapy session. And it struck me as odd how smart, good natured and polite he was. From the way he held his body I had expected him to be the mental equivalent of a cucumber. But he was fully present and actually a pleasant person to talk to. No sign of depression at all.
And still he always irritated me to the point of fury. I wanted to grab him by the limb shoulders, shake him and yell in his face “Why are you so sad? You walk on your own pair of legs, and that’s more than most here can say of themselves! You are stronger than all of us, you don’t need help to get up from a chair, I even saw you take the stairs without having to use the damn handhold! How dare you be so sad! How DARE you! Everyone here tries to be strong and optimistic, and you are the strongest of us, and you DARE to be so sad? And for f****s sake, take off that tote bag and carry it like a grown up, you look like you are five!”
I never said anything however, and if this man remembered me later, I am sure he remembered a polite young man who would always chat with him if we had to wait for therapy. To be honest, in all those weeks we were at the same hospital, I wanted to say something. Not yell, but at least speak my mind. But I was just too much of a coward. For this I am eternally grateful because of what happened in the last week.
As one of my many physiotherapy sessions started, his ended. And as I came into the gym I saw him sit on a bench and his trainer – a young girl half his size – stand in front of him. They chatted amiably, and then he lowered his head and torso even more, so that she could reach up and put his tote bag around his neck before giving him a long hug. When she was walking past the area where I was standing with my trainer, she wiped a tear out of her eye with the sleeve of her shirt. At this point I must have looked very surprised or even shocked – caused not, however, by that young girls tears, but rather by the fact that not everyone in the world found him as annoying as I did. My trainer saw my look and felt a need to explain: “Michael, this was the last time she saw him. By next year, his condition will have worsened so much that there is no more use for therapy. He was here for 6 weeks, and with any luck we extended his life by 2 weeks. He has ALS.”
I felt like shit. No… if you made a creature out of shit.. and you fed that creature nothing but shit – and then that creature…well…shits: that’s how I felt. For weeks I had been angry at a person because he could still walk so easily, I envied the strength that he had in his legs – and all this time he knew, he KNEW that within weeks this ability would be taken from him.
Day by day he’d be less and less able to make long strides, save steps, and every day the distance he could walk would get shorter and shorter. The muscles in his body had all deteriorated to the point where he couldn’t keep his torso straight anymore, where he couldn’t lift his arms at all, his hands couldn’t even hold a simple tote bag with nothing but his keys in it. All his muscles except for his legs. And instead of pitying himself, instead of sitting at home and feeling sorry for himself, this man went into a hospital for 6 weeks to go through tiring physiotherapy. Not because he was sad or depressed or lacked confidence – but because despite his fate, he was a fighter.
This was many years ago and this man is no longer here to accept my apologies for what I thought of him. Let me make penance by telling the world this short story that I know of him. He was easily one of the strongest persons that I had the honour to meet in my lifetime. I am still angry at myself for wasting this time I had with him on idle chit chat, when there had been so much I could have asked him, so much I could have learned from this gentle soul. Instead I wanted to tell him that the tote bag made him look like a five year old, and that he should stop feeling sorry for himself. Some things are never forgotten. Please forgive me.
3) The lady we couldn’t help
The young woman came to our self-help group on a rainy tuesday. Maybe she read about our monthly meetings in that greek restaurant on the internet, or an organisation had pointed us out to her. We are a fun bunch when we are together, and if the many canes and wheelchairs are no giveaway, you probably wouldn’t think we’re a self-help group. We founded this group almost 20 years ago – all of us living with some sort of muscular disease, or the parent or spouse of one who is affected. The original idea was to pool knowledge and experience together, to help each other out with moral support, but also give hands-on support with tricky subjects like accessibility in schools and workplaces, hospital stays or getting a drivers license or a modified car. All that stuff that “normal” people (my term, not theirs) do not have to think twice about. But, you can only share knowledge for so long until everything is said and done, and then it’s time to eat well, have a beer and tell jokes about people with disabilities, and how we were all fighting for the two disability parking spots in front of the restaurant.
And every once in a while, a person gets diagnosed with a muscular disease, and the doctor or some organisation will give them a flyer. And some of them decide that they want to meet people who are in similar situations, and they come to us. Those are the brave ones. Many decide against it, too afraid to see what the future might make of them or their loved ones. Or they come once, and at first they brighten up when they hear that this beautiful girl on the other side of the table has the same motor neurone disease as their own kid. And then they are shocked when they see that she is in a wheelchair, and orders her coke with a straw in it because she can’t lift the glass anymore. And when she asks her neighbour to cut the steak for her before she clumsily eats, using both her hands to lift the fork. Then they come no more and (I am sure) regret coming in the first place because now they now what “horrible future” lies ahead for their child. Their loss I say because 1) no one laughs and tells jokes about the disabled like a group of disabled after a beer and 2) they never stayed long enough to hear that that beautiful girl is married and working as a successful lawyer. Just like everyone else on the table is living a happy and fulfilled life.
Then one evening this young woman came. She was a little late, and we were already laughing loudly as she stepped into the restaurant. I remember vividly how she asked us if we knew where in the self-help group for people with muscular diseases was meeting. Apparently a room full of people howling with laughter did not meet her expectation. I also remember how someone told her with a bright and friendly grin that she had found them. And how I pretended to lean back in shock and yelled: “This is WHAT? I thought this is Alcoholics Anonymous! And I’ve been coming for 6 months already!”
She put her jacket, wet from the rain, over an empty chair and sat down with us. The relief to find such a happy and carefree group was plainly visible on her smiling face. No doubt she expected something a lot darker. It is not polite behaviour to point a finger at someone and say “So, what’s with you? What muscular disease do you have?” So we curbed our curiosity and kept telling stories and kept laughing, knowing that if she felt welcome she would tell us of her own story of her accord. It’s probably not easy to find a time of silence in such a setting when ones own voice can be heard. But when the food arrived, this silence ensued. She took the chance to say what was on her mind: “I had felt very weak for months now, and I went to many doctors and specialists. Now a doctor has told me that I have something called ALS.” What was a hungry silence before was now an absolute silence. I doubt if anyone even breathed. Keep in mind that this was in the early 2000s – you didn’t look up a medical condition on google or wikipedia.
“The thing is, he didn’t tell me any more. He was so vague. I asked him what that means, and what will happen, but he kinda.. he didn’t tell me. What is this ALS? I know it is a muscular disease, and that’s how I found out about you guys. I am just lost – I finally have a diagnosis, but I still don’t know what that means.”
We all knew what it meant. We had lost a friend to ALS just before. But how do you explain this condition to someone who has it? She was feeling tired for months and knew that something was not right. Maybe she also knew that there is no cure, no medication to make it better. But can you explain to her that her muscles will deteriorate so fast that she will be dead in four or five years, because her lungs will be too exhausted to work any more? That she has to start looking for an electric wheelchair tomorrow, because it’s only a matter of months if not weeks that she is still able to walk? That she shouldn’t feel guilty about quitting her work the next day, because she has very little time left before she will need constant care?
How do you say this to a person who just laughed with you so heartily, who was relieved that this evening she dreaded so much, turned out to be so great?
I do not remember the end of this evening. I think my mind switched off its recording device. Like it sometimes does in an accident or trauma. At first I felt incredulous that the doctor would not tell her what the diagnosis meant. The last thing I remember of this evening is that I knew EXACTLY how he must have felt. And that I couldn’t blame him for chickening out, because I…we… were doing the same.
I don’t think that anyone told her that day. I think the silence and awkwardness felt ominous to her, a dark foreboding. I think that after she found out where her story would lead her, she knew where our silence came from.
I know that I never saw her again, and I know that she is no longer among us. With ALS, you just know.
4) The Businessman
I met “the businessman” in a hospital. He was a teenager, maybe 14 or 16 years old. He drove an electric wheelchair. One of those where you know, the guy means business. This is his ride, and if you wanted him to move to a different wheelchair, he’d put up a veritable fight. It had flags, bags and stickers everywhere. On the back was a sticker that said “I break for kids”. I didn’t even have to look for it. I knew it would be there.
These kinds of wheelchairs are always a good place to start a conversation. You could ask the owner what kind of magnet was used in the electrical motors, and they’d know. Then they’d tell you where they are manufactured. You could ask for a random tool (say, a coaxial cable cutter), and the guy would roll his eyes and ask which size. And while he hands them to you he’d proceed to explain how he plans to bypass the main-board so that he can run power tools with his wheelchair batteries. To ask if it wouldn’t be more useful to charge cellphones that way is superfluous. Rest assured, he figured that out 5 minutes after the first test drive. “The businessman” was one of these guys. But the question I had while we waited for our group therapy to begin, was another.
“Why the heck do you carry all these plastic bottles with you?” On every hook, every bar on that wheelchair where plastic bags with logos from discount supermarkets. And each one was filled with recycle-able bottles of all colours and sizes to the point where the top one would fall out at the next sharp turn. I was sure I already knew the answer – but I was also sure that this one question would allow me to lean back and listen to his explanations for the next 10 minutes without having to utter another word.
“This my friend, is pure money. People throw this away everywhere, and they don’t know that it’s money! How much money do you think I have in all these bags?” I blinked. “Ten, oh, fifteen Euros! Collected them just in the last two days.” His hand flew behind his back, and out came a plastic reacher tool. Demonstrations at the nearby trash bin ensued, where I was introduced in the clandestine art of plastic bottle salvation, and the businessman had another ten, oh, fifteen cents in the bag!
You couldn’t help but like this guy. Even though his plastic bags smelled funny. He was full of energy and ambition. In a few years, he’d have an army of bottle collectors working for him, making a fortune in recycle-able plastic containers. Maybe branching out into different fields like lost cellphones he’d fish out of drains or knocked out teeth with gold fillings that he’d salvage from the busy party areas of the big european cities. Maybe now was the time to invest in equity by buying him a better reacher tool or bigger bags? What he said next put an end to my dreams of becoming rich by selling my shares in the future.
“I have ALS. But I don’t care. It’s been six years, and I’m still going.” The defiance and a sense of victory was palpable in his expression. He had lasted longer than his doctors had expected of him. There was this sense of possibility in his voice. They had already been wrong about his life expectancy – maybe they had been wrong about the rest too. If he held on a few more years, then maybe he’d see a cure being found, tested and released? This is a hope that many of us living with a muscular disease hold on to, especially when the condition has taken a step forward and progressed further into weakness and less independence. When I was fourteen, my own motor neurone disease was diagnosed. Back then I asked doctor for a guess how far a cure is away. He guessed maybe four years. That has been twenty years ago. The hope for a cure is the light at the end of a tunnel that is not in reach for people living with ALS though. Even if a possible cure were found today, the testing and development cycles are so long that no one living with ALS today would live to see it released.
But maybe I am wrong, and The Businessmen is still out there in his own private Lear Jet by now, bags with plastic bottles hanging of every hook and wing tip of the plane, and a plastic reacher tool clacking happily in the cockpit. And already I regret not investing.
Afterword and nomination
I see videos pop up on social media every day, where people pour ice cold water over themselves to raise awareness for ALS. They mention this condition, nominate others to do the same and sometimes suggest a small donation towards a cure (and demand a big one if the challenge is not accepted). It is beautiful to see how this movement goes viral on the internet.
I hope that my own ice water challenge shed some more light on what living with ALS means for the people living with it, or those loving someone who is affected by it. If you have read this far, you know all that I know about Amyotrophic lateral sclerosis. It is not much, but maybe it helps.
I will not follow in the footsteps of the other ice water challenge heroes by nominating more people to do the same. Instead I would like to ask that you point those that already did it to these stories, so that they can learn for whom they did it. And maybe you can pass one of these stories on to your friends during a drink or a long walk so that the world learns about ALS – ice bucket by ice bucket, story by story. And if you have stories of your own, send them my way and I’ll be happy to keep sharing them.
Lastly, let me stress that I am not a doctor. To those that claim I wrote something that is factually wrong or unlikely, let me say that I recounted these stories as I remember them today. And if you have been there, if you recognise one of these good people and you were a part of their story too, forgive me if I didn’t get everything right in my retelling of their story.