My Personal Experience With ALS

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The irony in being a blogger is that I was such an emotionally closed young adult. Now that I’m well into adulthood, some would say I won’t STFU.

In the past few weeks, The ALS Ice Bucket Challenge has made me even more verbal. Lucky you!

My father died of ALS in 1997 at the age of 54. Often referred to as Lou Gehrig’s Disease, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Basically, it’s a death sentence. While many medical professionals call it one of the worst ways to die, ALS traps a person’s mind and soul into a motionless body.

I was only 18 when my dad was handed his fatal diagnosis.

My hopes of moving to Vancouver and attending UBC quickly faded —  I knew I had to stay home and help my mom and brother care for my dad. And I did just that for the following 4 years.

I barely talked about it with my close-knit group of friends. After all, what 20-year-old wants to talk about death, dying and terminal illness?

So I kept it all inside, only sharing the occasional cry with my besties after several rounds of Rockaberry Cooler. But ‘The Fab 4′ knew I was hurting, and they often tried to pry even the slightest painful emotion out of me. God bless those biatches! And thankfully, my boyfriend was able to occasionally crack my brick wall regardless of my best efforts to keep it all in.

I was barely out of high school when I first learned how to transfer my dad from his La-Z-Boy chair to his wheelchair. By the time I was in university (in my hometown), I was helping with his personal care needs, bathing him, feeding him and taking turns sleeping next to him to turn him during the night to avoid bed sores.

Not to mention the BiPAP – his ‘breathing machine.’ In, out, in, out — the apparatus was always strapped over his nose, and it caused us several moments of panic. Why isn’t he breathing in again? It’s been too long. Is he dead?

Although it was heartbreaking – and we all made a lot of sacrifices – my mom, brother and I rallied by his side until his death, which was in our home (he was never admitted to a hospital or care facility).

I was by his side when he finally slipped off into a peaceful death. I held his hand and encouraged him to go when he whispered, “I see my dad and brother.” I watched his skin tone go from pale white to death gray. It was finally over — four years of being trapped in his body, all the while his mind and spirit were fully intact.

He never saw me graduate from university. He never walked me down the aisle — he never even met my husband. He never met my three kids, and he never saw me grow into the woman I’ve become. To say I’ve felt ripped off is an understatement.

Through it all, my dad was the very epitome of strength, courage and faith. Although I felt hopeless and terrified to watch him die, he never complained and always looked for the positive moments in life.

Although no one should have to lose a parent to this ugly disease, my dad inspired me to be a better person because of his battle with ALS. I always say, “The whole family gets ALS,” because when a loved one lives with this terrifying disease, it is all-comsuming. But since my father faced ALS with unbridled courage, he inspired all of us to live full lives after his death.

Now fast-forward 17 years since his death and I won’t STFU about it. I have been very verbal about my support for the Ice Bucket Challenge, shutting down the critics who are trying to steal these 10 minutes of fame for one of the worst diseases out there.

In closing, I’d like to share the following video from a young man who was recently diagnosed with ALS. His grandmother died of ALS, and his mother has ALS. To see the fear in his eyes – knowing what he will be facing soon – absolutely breaks my heart.

I’m not the only one who is finding hope in the ALS Ice Bucket Challenge. Check out his touching story below….

If you would like to make a donation to ALS Canada in my father’s memory, please donate here.

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Filed under: Carousel,Emotional Health,Health,Inspiration,Personal Development,Spirit

Photo credit: Courtesy of the Schafer family

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  1. Anna

    I am so sorry for your loss. I lost my mother this past June 13 and my uncle in 2010. Id rather watch a million ice bucket videos a day than watch someone else I love suffer through that again. Its about time people are made aware of ALS and funds are raised. My family and I are also very vocal and raise money year long for ALS. I am thrilled at the attention this has received and how much money has been raised. A cure will be found!!!!!

  2. Andrea

    I am with you. I lost my father to this horrific disease in 2001. I cannot count the number of times since then that I have explained to people what it is. My dad was the most friendly, social guy you could imagine. In 4 short years he went from that to a shell of a man. You were lucky that your father could still communicate….that ability is one of the first things my dad lost. He spent his last 2 years unable to speak. He would just lie in bed sometimes with tears streaming out of his eyes. My father died at home as well, holding my moms hand after one deep breath and 4 years of agony. If every ice bucket challenge brings us closer to a cure I hope to watch millions more.

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