We Have No Guarantees with ALS, but We Do Have Choices

We Have No Guarantees with ALS, but We Do Have Choices

“What? But there’s a guarantee on your website,” I told the customer service representative for the herbal company. I had requested a refund of a digestive supplement because it didn’t work for me.

He repeated his scripted line: “That product is nonreturnable because it’s consumable.”

“Wow!” I couldn’t believe my ears. I appealed to his reason and asked him to look at his company’s website.

It was impressive, and so were the testimonials, but what sold me was the “180-day money-back guarantee.” I checked the FAQ page to see if there were any strings attached. “If it doesn’t work for you, call customer service and get your money refunded, no questions asked.”

“It doesn’t matter what the website says,” the rep told me.

I asked to talk to his supervisor. He put me on hold, but the supervisor didn’t pick up.

I was upset. I had been sold a lie. I was the victim of false advertising, a guarantee that the company wouldn’t back up.

It wasn’t the first time that I had been disappointed in a guarantee.

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Ten years ago, my husband, Todd, and I were in good health. Todd had a decent job, and we lived in a beautiful bungalow with our two young children. We were living the American dream.

I didn’t know it at the time, but I had unwittingly bought into the prosperity gospel. We weren’t perfect, but we were trying to do good in the world. We loved each other, our kids, and our neighbors. God was blessing our lives.

Then Todd was diagnosed with ALS at just 39 years old. He was told that he’d likely live only another two to five more years. There was no cure or treatment.

I was so disappointed in God.

I found a blog by a young youth pastor I had worked with in Chicago. He lost his wife to cancer. Like us, they had two small children. I read through tears about their journey and her eventual death.

“It’s so unfair,” I told Todd. “They were following God. Good marriage. Happy family.”

“So, you think it would be fairer if only drug dealers got sick?”

Yup. If only there were a correlation. If you break the law, you get ALS. Cheat on your spouse, get cancer.

It seems like that’s how life should work. You reap what you sow. Do what’s right, and blessings will come your way.

But that’s not how life works. God doesn’t guarantee wealth and health, but it’s so easy to fall into those belief patterns because it’s almost become part of the human psyche, a promise of the American dream.

Work hard, and you’ll succeed. Take care of your body, and you’ll be healthy.

Everybody at some level buys into a philosophy of self-determination. Life does work when we make good choices — until it doesn’t.

And then disappointment sets in. We are stuck in that gap between expectation and reality — the higher the expectation, the greater the disappointment.

Life happens, and the American dream turns into a nightmare. When tragedy strikes, life becomes too complicated for easy answers and banal sayings. We may find ourselves in a crisis of meaning. Some people want to give up, and that sense of nihilism can extend to others. Some people get mean. Couples divorce.

Where do we go from here?

We must fight and refuse to give up. We keep trying and doing what’s right. But we adjust our guiding philosophy to something more realistic than cheap slogans and worthless guarantees. We find something true that still demands our agency.

Here it is: Life is hard. It’s unfair. But we can make it better than it could be by the choices we make.

Try to improve your situation. Practice gratitude. Sacrifice yourself for others.

Find purpose and meaning by living with love for the sake of our fellow humans and our own hearts.

We know that we can make it better than it could be because we see the results when people make the wrong choices.

People can make choices. That’s my message of hope. Todd and I choose to be kind to each other and our kids. We have agency, even in the dire war zone of ALS.

By the way, I did get my refund, thanks to the power of social media and a comment I made on the company’s Facebook page. The company was apologetic and promised it would never happen again. If only I had that much influence with God as I pray for Todd’s healing.

***

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.

5 comments

  1. There are many out there that give false hope. My husband and I always believed that they would find a cure before it got too bad. Yes, we had hope and travelled to Ireland to find a miracle. He died of ALS/FTD on June 8,2011 as of this date, there is still no cure.Still holding out hope for others that are struggling with this disease.

  2. Dave Reckonin says:

    “So, you think it would be fairer if only drug dealers got sick?”

    Well ..call me Mr Choosy, but yes, I do.

    However, as illness is random it shows how an argument for there being no God is logical, reasonable and rational.

    If we imagine for just a few moments that there is no God then it is easy to conceive of a world where the Natural Sciences -in the case of pALS Bio-Chemistry – randomly destroys lives in a a brutal and murderous fashion. Nature is randomly beautiful and yet randomly merciless at the same time.

    Now let’s imagine there IS a God.
    You believe there is one, yet we all see the same cruel random brutal violence of Nature.
    That logically means that the God has given Nature a horrific license to kill whenever and wherever the mood takes it.
    God therefore cannot be lauded as All-Loving if he gives his hitman such violent destructive power.

    • Andy Straw says:

      I believe the description of God, mankind, and this world given in the Christian Bible does the best job of explaining what we see and experience. God created a universe that he called good, and created mankind in his image, and called us very good. But he also gave us free will, by which we brought sin and evil into the world. Not only are we a fallen people, which means we hurt each other, but the world itself is also fallen, which means there is decay and disease.

      If this world were all that there is, I would despair. But the book of Revelation tells us of a future new heaven and new earth where “[God] will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”
      And the gospel provides a way to overcome sin and evil.

      So, as other verses say:
      2 Corinthians 4:16-17 [16] Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. [17 ] For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

      It’s nice to know that we can be renewed inwardly – and daily – even though our bodies are wearing out. And while it’s hard to think of ALS as a “light and momentary trouble”, these verses give me hope that I have an awesome heaven to look forward to.

      Why did God set things up this way? I don’t know, but these verses remind us that God is bigger than we are:

      Isaiah 55:8-9 NIV [8] “For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. [9] “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

      Romans 11:33-34 NIV [33] Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! [34] “Who has known the mind of the Lord? Or who has been his counselor?”

  3. Creighton Rider says:

    Good timber does not grow with ease,
    The stronger wind, the stronger trees.
    The further sky, the greater length.
    The more the storm, the more the strength.
    By sun and cold, by rain and snow,
    In trees and men good timbers grow.

    -Douglas Malloch, “Good Timber”

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