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Dear ALS, I hate you!

Category:ALS,Bereavement,Death and Dying,Lifestyle,Writing Tags : 

Dear ALS…
blogger and writer, judith mallard

Several years ago – I remember sitting with a good friend and mentor as he shared with me his own personal wisdom of the many do’s and don’ts that exists within the business world. I was just about to launch my own Recruitment Agency and I figured I could use all the help I could get.

I knew if I ever need help with anything at all – I could go to him – he would know the answer. He always knew the answer. And he was never too busy for me. He just wanted to see me succeed and that’s just the way he was.

One day in particular stands out more vividly than others. We were sipping our Tim Horton’s coffee in downtown Toronto, right at the corner of John and King, my friend was telling me about an upcoming surgery he was going to have.

The doctors think I have carpal tunnel syndrome,” he said “they figure it should help.” I remember taking his hand in mine and running my fingers along the smoothness of his skin – I told him he had baby soft skin and we both started laughing.

I could see how the muscles on his hand seemed to cave in, “that doesn’t look like any carpal tunnel I’ve read about,” I mentioned to him. We both shrugged. Maybe because we didn’t want it to be anything else. Isn’t ignorance supposed to be bliss?

Needless to say it wasn’t carpal tunnel syndrome.

“ALS (Amyotrophic Lateral Sclerosis) is a rapidly progressive, neuromuscular disease. It attacks the motor neurons that transmit electrical impulses from the brain to the voluntary muscles in the body. When they fail to receive messages, the muscles lose strength, atrophy and die. ALS can strike anyone at any time, regardless of age, gender, or ethnic origin. It does not affect the senses, and only rarely does it affect the mind. The average life expectancy after diagnosis is 3 to 5 years. (Excerpt from © ALS SOCIETY OF BRITISH COLUMBIA)”

Why is it for such an intelligent species, we tend to put on blinders when it comes to illnesses and dying. Why do we believe that we have all the time in the world to do whatever it is we desire. And more importantly, why are we so afraid to even talk about it. But therein is the reason, isn’t it. We are afraid. And if we don’t talk about it – it won’t be real. How’s that for naiveté.

And while we all will vehemently state “everyone has to die one day”, it is with reckless abandonment – that we try to distance ourselves from actually feeling this and the weight that often comes with it. In some childlike way, we rationalize that even though we are aware of it – it just happens to everyone else around us.

Then one day it happens. The “around us” gets closer. And we’re shaken to our core. We get scared, we get angry and sometimes we even hate.

We feel insulted when we have to go about our regular day as if everything is the same or dare I say it, normal. We want to scream and yell at the injustices – something to mark the occasion – something that brings attention to the fact that, “this isn’t just another day.

We get up the next morning; go about reviewing our same daily tasks, perhaps in between booking doctor’s visits and some other mundane appointments. Most within our circles or network of connections are none the wiser. Because you see – it is just another day. And life does not stop when you are handed a death notice. In fact – in my opinion, you are never more alive, or aware of it.

I’ll be very honest, it was hard to see my friend. I was often at a loss. I didn’t have any magic words – I didn’t have anything that could make it better. And that made me so very angry and very scared.

We chatted, as best as we could – he would get frustrated sometimes – but dear god who wouldn’t, with the battle he had before him. I couldn’t always make out what he was trying to say, which also frustrated me, because I didn’t want him to get frustrated – but between the two of us, we did the best we could With each passing week – it was harder, and I was often unsure what to do. I wanted to fix it – and I knew I couldn’t. You just feel so damn helpless.

At times, I just wanted to rip this evil thing out of him. And that is the only way I can describe it. I wanted to take away his fear when he would tell me how afraid he is, especially when he knew what his future was going to be like. I listened to him when he would tell me how much he worried about his wife and how he was so amazed at how much she actually does. He was aware of this, every single day. I smile when I think of that. She’s such a tiny lass. Yet her strength in facing such devastating adversity was simply beautiful and inspiring and so filled with love. At times it did knock her down, and even though it was not easy to get back up, she always did.

And still our daily lives go on. Emails are answered, messages are texted and appointments are confirmed.

One thing that initially caused me a wee bit of confusion with my friend, was how persistent he was in wanting to make sure his business kept moving smoothly. I’ve had to wrestle with that one, and still do at times. My instinctive reaction was, “what the hell, forget about it, how can that be important now.” But for so many of us, it is. I know his motivation was also based on watching his wife. He had to look after her, he still saw that as his responsibility – I saw that in everything he pushed himself to do. And that’s just the way it is. Life goes on – for everyone. No meanness meant or cold heartedness. Regardless of what a doctor may tell us – there are still things that have to be done. And we have families that we will worry about until the day we take our last breath. That is who we are and that is life.

There were times when I thought there was such cruelness afoot, some bad cosmic influence. How can one be expected to go about their day when given such horrible news? But people are doing this every single day. They get up each morning – put one foot in front of the other – when possible, and they face their day. Because they know what the alternative is, and they choose to live first and foremost, as painful and as difficult as that can be. To me they are true heroes, they are the magical markers in our lives.

And the first thing that we should do, is applaud them – recognize them – and help whenever we can. And never, ever, dismiss the obvious elephant in the room. Some things cannot be hidden, nor should be.

I didn’t know how to tell my friend how much I hated his ALS and how it made me angry. It confused me in ways that I can’t really explain, even to myself. So I would tell him how much I love him – I would make him laugh, he would make me cry – and we would also make each other strong. I never say, it’s not fair. I understand – it just is. Once you realize this, it’s then that you can try to make a difference, no matter how big or how small. You help out, you listen and you try not to get caught up in thinking that you have to fix something that can’t be fixed.

I don’t see my work day like I use to. I don’t see any day like I use to. Is it my maturing age, or is it in the fact that too often I see my friends and family just not being there anymore. What we do each day, work or otherwise, is supposed to be a choice and not a chore. We can find joy and choose joy. Even amidst the pain, the trauma and the not so fun parts. It’s also a day where we should never forget to reach out and let others know they are being thought of. I try not to take anything for granted. I cannot reiterate enough, that life is so short, but you can do a lot with the one you have, you truly can. Just open your eyes.

“Understand your WORTH. Value your LIFE. Appreciate your BLESSINGS. Be GRATEFUL.”

As much as there is sadness afoot, there is also an abundance of love and joy around us. You have to believe this. No job placement or new business will ever replace that. And it is with that humility and gratitude that everything else just falls into place, and begins to make sense.

If I could wish anything for anyone – it would be to find that balance.

I sincerely believe we all do have a purpose and that we all can make a difference, no matter how big or how small. It is up to each and every one of us to choose to make that difference.

For myself, I find that I am no longer searching for those definitive answers to “why this or why that happens.” As corny as it may sound….”it just is.” I’m actually astonished that I find peace in such three simple words.

I remember an interesting passage I once read in a book, called Laws of Attraction, it makes more sense to me now.

” If contrast were to cease, so would expansion. We need expansion for eternity. Without it there wouldn’t be more. There wouldn’t be us.”

And I am so thankful for “us,” in whatever shape or form.

Even when I am angry and even when I hate.

© 2018 Judith Mallard


October 2019
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