Suffering Connects Us All

Suffering Connects Us All

“So tell us your story,” we often ask people who come to help with Todd’s care.

Those who show particularly deep compassion tend to have their own story of suffering, or they’ve loved and cared for someone who suffered. A stage IV cancer survivor. A disabled parent. A sibling who died.

You don’t have to dig deep to find that the best charitable organizations were founded by people who’ve experienced loss.

A few years ago, a tragedy struck our community in the Upper Peninsula of Michigan. Two men and a boy never returned from fishing on Lake Superior.

On Sept. 17, 2016, Keith Karvonen, 61, Steven Chartre, 41, and Chartre’s 9-year-old son, Ethan, set out on the big lake on a 16-foot boat.

Their families reported them missing that evening.

The U.S. Coast Guard and Michigan State Police searched by land, water, and air. Local law enforcement joined the effort, along with the Canadian Coast Guard, the Keweenaw Bay Indian Community Tribal Police, and many individuals. Our community waited and prayed.

After four days and a search that covered 14,000 square miles, Keith, Steven, and Ethan were presumed drowned.

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But the families needed to know for sure, so Bruce’s Legacy came to help.

Bruce’s Legacy is a nonprofit search-and-recovery organization started by a man who lost his brother, Bruce Cormican.

Bruce was a firefighter who received a call about a drowning victim. A man and his daughters had been canoeing when they fell into a flooded river. The daughters survived, but their father perished. Bruce died in his attempt to recover the body.

His brother started Bruce’s Legacy in his honor. He purchased the best equipment he could find to help other families get closure.

Using advanced sonar equipment, volunteers from Bruce’s Legacy found Keith Karvonen’s boat in Lake Superior and recovered the bodies in 280 feet of water.

Years before, Bruce had compassion for a grieving family. Bruce’s death resulted in his brother having compassion for the families of the lost Lake Superior fishermen. And one of the people who has helped with Todd’s care is the sister of Keith Karvonen, one of the men who drowned.

Suffering connects us all.

When we suffer, our hearts are joined to other people who are suffering. When we suffer with someone, we develop compassion. That’s where the word compassion comes from — Latin for “with suffering.”

When life is going as planned, we can become arrogant and pin others’ misfortunes on poor choices. We can think that we’re healthy because of our diet or exercise routine. We can think we’re financially secure because we’re hardworking and intelligent.

However, life sometimes gets in the way. We get sick through no fault of our own. We lose a job in a down economy. We have an accident. In those times, we need people to come alongside us.

Shortly after Todd’s ALS diagnosis, when I was feeling overwhelmed by our future, I sought out my Aunt Phyllis’ advice.

Why her? Because she lived with my uncle for years after he became disabled by a stroke. I knew she would get it. She was one of my biggest emotional supports because of what she had been through.

Several years later, she was diagnosed with cancer. As I sat with her and sang hymns to her in her final days, she told me that my presence was comforting.

I’m thankful that I was able to be with her. I also recognize that my knowing how to be with and sit with her was born out of my own grief.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

3 comments

  1. SIM WORTHAM says:

    There is a cure for this decease but will all should understand that there is no money in curing it. I’m a veteran and this country doesn’t care about us. #95Bravo

    • Michelle Osuski says:

      When I was in Mayo clinic. They told me that I was to old for some of their studies. So I felt our lives don’t count.

  2. Dan D Montgomery says:

    ~Dreams Flame Out~

    Watchin’ my dreams flame out
    As clinical trial requests get turned down
    I’m so on fire this ALS hurts like hell
    And all hope just flames out

    Just watchin’ a river run
    Down this IV tube into my vein
    It’s almost like it’s cryin’ my tears
    I had the world on a string
    And then I lost everything
    That’s how I wound up here

    Watchin’ my dreams flame out
    As clinical trial requests get turned down
    There’s nothing left but an empty heart now
    It’s all memories now
    Smokin’ memories that ain’t nothin’ but ashes
    In these no cure low lights
    It’s done me wrong and I can’t get it right
    I’m so on fire this ALS hurts like hell
    As all my dreams just flame out

    If you put your hands into the ALS flame
    You’ve got no right to complain
    ‘Cause you know it’s gonna leave a mark
    When the glow comes to an end
    Like scattered embers in the wind
    Means you’re still lookin’ for a brand new spark

    Watchin’ my dreams flame out

    ♫♫♪♪ ♫♫♪♪♫♫♪♪ ♫♫♪♪ ♫♫♪♪

    Clinical trials I cant get
    I’m gonna quit
    But who am I kiddin’ I just can’t lay down
    So I keep hangin’ around

    Watchin’ my dreams flame out
    As clinical trial requests get turned down
    There’s nothing left but this empty heart now
    It’s all memories now
    Smokin’ memories that ain’t nothin’ but ashes
    In the no cure low lights
    It’s done me wrong and I can’t get it right
    I’m so on fire this ALS hurts like hell
    As all my dreams just flame out
    I’m so on fire this ALS hurts like hell
    As all my dreams just flame out

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