Why I took the ALS Challenge

This afternoon I was checking facebook, and BLAM, there it was. A challenge to participate in the ALS Ice Bucket challenge from my sorta-kinda-sister in law/sister from another mister, Katie. I am sure everyone out there has heard of the challenge, but I will briefly explain just in case you’ve been away from the internet for the last couple weeks.

Basically, you get challenged by someone to participate. That means you have 24 hours to do so. Participation means either donating $100 to the cause, or pouring a bucket of ice water over your head. Most people, especially celebrities, have been doing both (dumping a bucket on their head and donating). The challenge has been HUGELY successful and has been raising millions of dollars for the cause as well as awareness about the disease.

Like with anything that garners that much attention, there has been some who speak against it. They have been saying that it’s just an attention seeking ridiculous act of slacktivism, it is a waste of fresh drinking water, it is a distraction from bigger problems (world issues, other diseases, etc…etc…). I have felt slightly torn on the subject (as I tend to me. I am a gemini through and through, I have no problem seeing both sides and often have a hard time cementing my own feelings on a subject).

This is my reaction: Is dumping a bucket of water on your head really that harmful? Is it that different from marathons or other fundraisers? I have participated in runs, walks, dinners, fundraisers, you name it. I worked in fundraising for both the Children’s Hospital of Eastern Ontario as well as the Cancer Society. If anything, I think it’s absolutely brilliant that this has taken off the way it has. That it has people talking. Yes, there are lots of causes out there, lots of places you can put your money. Lots of things you can do. So, if this one doesn’t tickle your fancy, don’t participate. It is that easy.

Amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease) is a fatal neurodegenerative disease. People living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord. Eighty per cent of people with ALS die within two to five years of diagnosis– unable to breathe or swallow. Ten per cent of those affected may live for 10 years or longer.

 

Other neurodegenerative diseases include Alzheimer’s disease, Huntington’s disease and Parkinson’s disease. According to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040.

ALS has no known cure or effective treatment yet. For every person diagnosed with ALS, a person living with ALS dies. Approximately 2,500 – 3,000 Canadians currently live with this fatal disease.

-From “What is ALS?”, ALS Canada website.

 

Why I am taking the challenge

When I was working at the little fabrication shop in my early 20s, I met this fantastic guy who worked in the shop. He was in his early 30s, had been married for a couple of years and was super sweet. I always looked forward to interacting with him because he was one of the few guys in the shop who not only treated me with respect, but was sweet and funny. He came into work one day, absolutely beaming. I asked him what was up, and he announced he was expecting his first child. When the baby was born, he brought the baby in so that I could meet him. While his wife was pregnant, he started having issues in the shop. He was a machinist, he worked detailed work with his hands. His left hand was giving him issues. He was experiencing weakness and shaking. Time passed and it slowly got worse until he couldn’t ignore it anymore. He had a newborn baby at this point. He knew he couldn’t afford to lose his job because of some stupid hand thing.

I remember the day he had his appointment with the doctor. Everything seemed to happen so fast. It with ALS. Within a month, the paralysis had spread all along his left side. He had to leave work. We got updates for a while, and a few of the guys ran a fundraiser for the family, but then we stopped hearing how he was doing. ALS was so incredibly swift in this case.

Fast forward a few years. My Mom had this best friend, a woman named Karin. Karin met and married this amazing guy, named Scott. He reminded me SO MUCH of my Dad. My parents got along extremely well with Karin and Scott. When my Dad died, Karin and Scott really grew close to my Mom. They went “camping” together in their decked out trailers at the fancy trailer park. In fact, it was Karin who knew before anyone that my Mom was dying. It was Karin who told me to bring Mom to the hospital and, eventually, to call family to come down. Karin and Scott were there, in the room with me, when Mom passed. Karin helped me with the arrangements and supported me, initially, through the horrible family stuff that happened with the estate. Unfortunately, she just couldn’t understand my unwillingness to keep my Dad’s kids in my life. She remains in contact with them, today. I haven’t seen her since my wedding day. Both she and Scott were there.

Around the time I was married, Scott started having serious back and neck issues. He was a guard with the Commissionaires in downtown Ottawa, It was having a major impact on his job and he could no longer ignore the issues it was causing in his life. It took his doctor a while to figure it out, because of where and how the symptoms were presenting. They were so sure it was severe and sudden arthritis…it was ALS. I didn’t find out until after Karin and I had stopped speaking, but I did reach out to her. I followed their story on facebook as much as I could. In October of 2011, Scott passed away and I was absolutely heart broken.

I watched as ALS took two wonderful men from families and friends who loved them, and depended on them. I saw how quickly it took their bodies from them.

If there is anything, big or small, that I can do to help raise awareness and a bit of money to help other ALS families, you bet I’m going to do it. So, here I am. I am taking the challenge.

I challenge my co-workers at Belly Laughs and the girls at LoveCraft Gallery.

 

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