Fuck ALS

This year, after the 2nd Annual Deanapolooza, friends and readers asked if I would write another article like An Evening with a Soul, written last year after the event. I laughed, and shrugged it off. The truth was, I couldn’t. I write to work through, inspire, and uplift, and I just felt so incredibly sad… That evening, after the concert, my husband and I sat talking about the night, the people we saw, and our friend Dean. While Pete had seen him since, I had not since last summer. Like so many others in attendance, I was overcome when Dean took to the stage, joined by his brother PJ, and wife Paula to say their thank yous, and hand out door prizes. The air went out of me, and it seemed like a while before I took another breath. I turned to the friends I’d been standing with, who stood looking serious despite the humour Dean’s brother tried to inject into his monologue. Our eyes wet, as though there was a communal lump building in our collective throat. Don’t cry, I told myself in vain as the tears rolled down my cheeks. We watched as Paula folded her arms around Dean, their bond like a separate entity in the room. Whether for balance, or emotional support, the two stood intertwined. I knew that look, I thought to myself. While I don’t know ALS the way that Dean and Paula, and their loved ones know it, I do know that look… The way her eyes tracked him, and watched his every move, her protectiveness, and the warmth in every touch. Dean is not the only one affected by the disease. She suffers right along with him, the way we do when someone we love is affected. The way I did with Dad. The way we all did.

Following the concert I did not write as I had last year just 24hrs after attending. I told myself, they don’t need my sadness. What right do I have to feel sad anyway, when they have shown such courage. They just need people to be. Be normal. Be supportive. Be themselves.

Last year, this time, I prepared to say goodbye to my father. It will be a year this Friday that he’s gone. I miss him so much, and in the weeks leading up to Deenapolooza I’d been a quiet mess, trying not to let my grief show. After all, how long can a person go on being sad, and why was I feeling like I was losing him all over again as the first anniversary drew near? After the concert that night I thought about Dean. I thought about Dad too… Why is it that we grieve even before someone has gone? I remember going through this with dad, and someone close to me saying, love now, grieve later. That night when I got home, I thought about feeling alive, and how much I had to be grateful for, “STOP whining, and live your life!”, I scolded myself. I had been so down thinking about Dad, so sad for Dean and Paula. I have a life to live. I am here, and so is Dean. Don’t grieve him, I thought. Don’t be sad for him. He is with us, in the land of the living, where his wife can still wrap her arms around him, and his children can still kiss his sweet face. Don’t be sad for yourself either, you wake up each day and get to live and love another 24hrs. You get to see your babies grow, and seasons change. Dad would want me to see the incredible gift that that is. He would want me to feel what I feel while never losing sight of the silver lining around every cloud. “All we ever have is today”, he’d say. I imagine Dean and Paula also understand this better than anybody. And so, I sat with my conclusions, but thought best still not to write. “Write when you are moved to write”, a little voice in my head nudged.

On July 1st there was another 2nd annual: The West Island Pond Hockey Tournament. The event brought together 100 hockey players, all connected to Dean in some way. Hot shots, superstars, and men who played the game in their youth, laced them up to raise money for a cause that has rocked a community. Having grown up a rink rat, with hockey still a huge part of my life, there is something unique about this day, and this tournament. A success, not just because of the money raised, or the scholarship that has now been born out of the tournament. Nor can the day’s success be solely attributed to generous sponsors, or the countless dedicated volunteers that made the day run seamlessly. No, the shining star last year, and this year, is the heartbeat of the arena as it fills with players, volunteers, supporters, parents, grandparents, wives, sisters, brothers, cousins, and friends to play a game, cheer on the teams, have a bite, raise a glass, and share a laugh. Not because we are sad for Dean, Paula or their families. But because of them. Because life is worth raising a glass to, and because making time to catch up with old friends is everything. The highlight for me was watching all of the children laughing, and chasing each other around, looking up at their fathers, uncles and brothers towering over them in skates. It was seeing my 8 year old daughter sending papa a text after we got home to tell him how very proud she was of what he, and the team of organizers had accomplished. The success of the concert, and the tournament lies in our coming together, and feeling together. It lies in connection.

Last year Dean played in the tournament. He walked around, and said his hellos, thanking people for participating. This year he did not play, nor could he speak, but his presence rang out over the laughter and banter that filled the noisy arena. He is still here, living, breathing, smiling and thanking people with warm embraces, and that twinkle in his eye. This year his son dressed in his place, bursting with pride as he took to the ice with the big boys.

As I left the arena, tired kids in tow, Dean attempted to blow me a kiss, locking eyes, exchanging words without uttering a sound. His message heard, mine too I believe, “Good to see you old friend. Take good care”. I did not leave the WIPHT sad. I left with a full heart. I left telling myself that events like these are important. Not just because of the money they raise, but because they bring us together, reminding us that we are never truly alone.

In the two and a half years my father lived with cancer, I hated when well meaning people would tell me not to give up, or let my dad give up, as though our opponent, the big C, could be outfought or outsmarted if we played the game right. It bothered me because I thought, what a message to send to someone fighting for their life. What a thing to say to a person who knows better than anyone else how precious each moment is, and who despite his tenacity, and positive attitude continued to decline. My father did not lose his battle with cancer. He was not beaten down by a more powerful adversary. His spirit won. He was more of a champion in his final days than any famous boxing champ he’d long since admired. And so, I didn’t want to write some syropy, fight the good fight article. No one needs to tell a person in the fight to fight. The more I thought about this, the angrier I became. Sometimes all we can do is feel, and I felt I had something I wanted to say about what I was feeling, I just couldn’t find the words. That is, until I sat looking through pictures posted on the tournament’s Facebook page. One photograph, out of over 200 struck a deep chord with me. I had yet to write a single word, but looking at this picture of Dean, and his father in-law I knew. Turning to Pete, I said, “I’m gonna write an article, and I’m gonna use this picture.” He looked over at me, interested in which picture I was referring to. “I’m gonna call it Fuck ALS.” He nodded a heavy nod. “Perfect”, he said, emotion quietly washing over his strong face. No disease will ever win over your spirit Dean. No disease will ever be the victor over the bond you share with your wife, children, family, and friends. Nothing will ever win out over the love you give, and receive. While the disease may be everything, it is also nothing, just like my father was so much more than his cancer. You are so much more than a man affected by ALS. So here it is, an article inspired by an image that made me laugh out loud, and cry at the same time of two men flipping the bird. Fuck ALS. It does not hold a candle to you Dean Stock.

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13 Comments

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13 responses to “Fuck ALS

  1. Sandra Brennan Lowson

    Wow! Love your article and certainly the picture. I have a small connection to the Stock’s as my daughter Alana Blouin is also a friend of theirs. I have a greater connection to the dreadful ALS as my Dad passed away almost 44 years ago after a diagnosis two years prior. I too watched a vibrant, hard working man, who never took a sick day all his working life, decline to the point where we were more than prepared to let him go. I constantly keep Dean and Paula and their family in my thoughts and prayers. Hopefully soon we will have answers to why and how, as I read in the Gazette this morning. But for now I agree….FUCK ALS!

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  2. Cindy

    Once again Shannon your writing comes at a time when I needed it.
    Last week my mother in law was told she had 6-12 months to live. She has been fighting cancer for 13 years now.
    I haven’t seen her yet, but you are right, when I do I need to remember to celebrate her. Not sit and dread the inevitable.
    I feel for what the Stock family is going through and my prayers are with his family and yours as well:)
    Love, Cindy

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  3. Emily Newell

    this article so perfectly described so many of the emotions and experiences I had through my husband’s battle with ALS. thank you for writing it and sharing it

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  4. Jackie

    I was stunned at how well written this was and how it captured so clearly how so many of us feel. Everything about it was so raw and true. It was filled with a roller coaster of emotion… from sadness, to happiness to anger, and to gratitude. Simply amazing. You are right – Fuck ALS.

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  5. I loved EVERY word Shannon!

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  6. Elizabeth Fahey

    Truly well written, inspirational and heart warming. Dean, Paula and family
    your are in my thoughts and prayers. Love and enjoy
    each day as they arrive. You
    are an inspiration who motivates many people in the ripple of life.

    Elizabeth Fahey

    Like

  7. Anonymous

    Thank you Shannon for these words at such an extremely sad and difficult time for my family as my mom battles ALS… My prayers go out to all those living with ALS and their caregivers.

    Like

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