I’m Always Wondering About the Emotional Impact of ALS

I’m Always Wondering About the Emotional Impact of ALS
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“Be nicer,” my daughter whispered to me when I was on the phone telling a restaurant employee my pizza takeout bill was $20 higher than it should be.

My tone was apparently sharper than I realized as I went through the math of half off the second pizzas with add-ons for gluten-free crust and extra toppings. “If I buy one specialty pizza, shouldn’t the second specialty pizza be included in the half-off deal?”

“Ma’am, I’m just a minimum-wage worker,” the employee said.

I took a deep breath and shut up while he figured out where the extra charges came from. He gave me the correct total, and I apologized for being a pain in the butt.

I felt sheepish when I picked up the pies, like when George Banks in “Father of the Bride” ends up in jail over an argument about hot dog buns.

Is that who I’ve become?

And then I gave myself a pass. It’s the constant stress I’m under, right? Living with my husband’s terminal illness for a decade has warped me.

I wonder, too, when one of our kids has a meltdown or an issue at school, is it because their dad has ALS?

I was amused by a social media post from another mom: “My teenager is annoyed by me when I say ‘hello.’”

I commented, “Or how about ‘good morning?’”

Another mom weighed in, “My teenager is annoyed by my breathing.”

I laughed with relief. Teenage moodiness is normal.

And maybe my occasional rudeness is normal. I’ve had to apologize at times for being overly assertive long before Todd had ALS.

In preparation for our honeymoon, I stopped to pick up an item I needed from a laundry that advertised “One-Hour Dry Cleaning.” The employee at the counter told me my clothing wasn’t ready.

“But your sign says ‘One-Hour.'” I had dropped off the item the day before.

The clerk explained that the machine only takes an hour once it starts, but my item was still in queue and wouldn’t be ready for a few days. An argument ensued, and I made the undeniable point that we expect to get our prints from one-hour photo shops in an hour. But it was of no use, and we had to leave, so I left with my unlaundered clothing.

When I got home, I called the business to apologize. “Remember me? I’m sorry I was rude.”

The stress of managing the disease has affected me so greatly that I view all of reality through lenses filtered by ALS.

When Todd forgets something or uses the wrong word, I wonder if it’s related to ALS. Is his brain foggy from lack of uninterrupted sleep? Is it because he’s not getting enough oxygen? Is he developing frontotemporal dementia?

I need to remind myself that 17 years ago, Todd mixed up the return date of our flight home from Maine after our honeymoon. He booked our bed-and-breakfast for one day too long, and we showed up to the airport the day after our flight had left.

He’s really smart, but he’s never been perfect. Still, I was relieved when Todd beat me by many points when we played Scrabble over the holidays. And more impressively, he beat my brother, which only happens once every couple years.

While ALS takes an obvious physical toll on Todd, it’s hard to know exactly what the impact has on him mentally and emotionally, and it’s even harder to know how our situation affects the kids and me.

In any case, we are humans in an imperfect world, so we do our best and ask forgiveness when we misstep.

***

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, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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8 comments

  1. Thaddeus Szczesny says:

    As a person with ALS ,I enjoy your articles. This disease has been a burden for all involved. With the grace of God we will get through this.

  2. John alvarez says:

    dear Kristen
    I continue to enjoy your inner feelings, you are quite inspirational, from someone who is not easily impressed. This easter I will enter my ninth year battling with the beast as we call it in Australia. Keep it up, there is hope.

  3. Anne says:

    The love of my life left me for heaven last April. I find myself waiting for your columns each Thursday. You have the talent and courage to say what so many of us feel. My thoughts? Lean in to the suffering and deposit each moment of love and hope and humor in the memory bank. ALS or not? As humans, the memory bank is our treasure trove. Grateful for you and your family.

  4. Kw says:

    My husband was diagnosed 4 months after we got married. We’re nearly 3 months in and I’m dying inside, along with him. He is losing his voice. And I am losing him, even though he isn’t actively dying. I look forward to your posts and read your blog. It’s nice to have someone put pen to paper to chronicle my emotional battle.

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