Discovering the World Is Broken

Kristin Neva avatar

by Kristin Neva |

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“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot.

I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time he had been out of the house since a doctor’s appointment two months earlier.

The children continued down the sidewalk, and the boy, about 4 years old, looked back and again called out, “What the heck happened to that guy?”

Todd and I laughed as I strapped the Q’Straints onto his wheelchair.

The boy was just saying what a lot of people probably think, if they even notice us.

I sometimes forget how unusual Todd’s setup looks. Not only is he in a power wheelchair, but he controls it with a head array, because he’s paralyzed due to ALS. Todd was diagnosed over a decade ago, and he’s had his chair for the past seven years. I’m used to it, but it’s not normal.

The boisterous child didn’t have the filter that most adults have, but I delighted in his honesty. It’s good that he noticed Todd, as he’s making sense of the world. I appreciated the indignation inherent in his emphatic question.

He was really saying, “There’s something wrong here. This should not be.”

“You’re right, kid.”

Life should not be this hard. Paralysis. Compromised breathing. The inability to cough independently. And living with the knowledge that the future will be even harder than today.

I don’t know that we can ever fully adjust to living on the edge of an eroding cliff.

I escape the hardness of our reality when I’m sleeping, but sometimes I wake up and disappointment washes over me. Ugh. ALS is our reality. I wish I could wake up and find out that ALS had been a nightmare and we’d get our life back.

It’s hard to let go of dreams that were anchored in beliefs about how life and the world is supposed to work. Now I’m adrift in uncertainty, grasping at bits of joy in a sea of sorrow.

Of course, many tragic things have happened long before my husband became “that guy,” but I distanced myself from the suffering in the world. I knew bad things happened to people — other people — every day, but I never imagined that this would be our life.

I suppose naïve optimism is a gift.

It would be paralyzing to assume that tragedy would strike every time we got into a vehicle and hurled ourselves down the highway at 60 miles per hour.

Instead, we make our marriage vows “for better or worse, in sickness and in health,” thinking that we’ll have “for better” and “in health” until far into the future. And then we bring children into this world, excited for their future.

Sometimes I reread my journals of yesteryear and I miss the person I used to be before grief got a hold on me. I miss the idealistic young woman who approached life as a great adventure.

What the heck happened to that girl?

When I was a few months old, my dad’s godmother, an elderly Finnish woman, came to visit my mom. Looking at me, she sighed and said, “Voi pieni raukka! Tämä maailma on niin kurja paikka.”

“Oh, poor little one! This world is such a miserable place.”

At the time, my mom thought, “What a thing to say to a new mother!” But now that my mom is nearly the same age, she says she understands. Life can be difficult. Her words merely expressed tender compassion, because that seasoned woman survived hardship, as many Finns of her day had. She fully expected life would be hard.

And yet we push onward in the shadows and watch for rays of light to break through.


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.


JOEY avatar


Thanks for sharing, just starting my journey recently Diagnosed ALS. Staying Healthy, slight difficulty mobility. Joey

Kristin Neva avatar

Kristin Neva

Thanks for commenting Joey.

Suzanna Smulligan avatar

Suzanna Smulligan

I would like more information on als. The changes the different
Of crap they go threw. I kmow everyone is different.
One of my friends Got als and in 9 months he dead. My twin sister has als and she can not speak or use her hands or walk but a few steps.Could you please help me.

Kristin Neva avatar

Kristin Neva

So hard. The MDA has a lot of information about the disease and management on their website:

Gail Albert avatar

Gail Albert

Bless you, Kristin for so poignantly and eloquently expressing the emotions and thoughts that I experience. So often it’s like you are reading my mind. As my husband and I travel on this strange journey and as his condition progresses, I am always anxious to read your columns, comforted by your words that you are so kind to share.
Thank you too, for the videos you and Todd have shared. We are finding them so helpful.

Kristin Neva avatar

Kristin Neva

Thanks for your encouraging words Gail!

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