On my birthday I had everything I wanted

Figuring out how to want less in life with ALS

Kristin Neva avatar

by Kristin Neva |

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A couple weeks ago, a friend asked me, “What are you going to do for your birthday?”

“We’ll just have a family dinner and play games,” I said. “That’s all I want.”

When my husband, Todd, and I were married, we might have gone on a weekend getaway or out for dinner at a nice restaurant. But since he’s had ALS, I’ve come to expect less.

Arthur C. Brooks writes in The Atlantic about wanting less: “The secret to satisfaction is not to increase our haves — that will never work (or at least, it will never last). That is the treadmill formula, not the satisfaction formula. The secret is to manage our wants. By managing what we want instead of what we have, we give ourselves a chance to lead more satisfied lives.”

After living with Todd’s ALS for more than 13 years, my baseline emotion is often sadness. I rise above that in intervals throughout the day: when watching a funny movie or show with my husband, laughing with my daughter as she tells a story, or mountain biking with my son. But then, when I’m left alone with my thoughts, I’m sad again.

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Grieving what we’ve lost

While I’m thankful that Todd is still here with us, I grieve what we’ve lost. I want more from life than is possible with ALS. I want to be able to travel with Todd and our kids. I want to be able to go on a walk and hold hands. I miss his hugs. I’d even be happy if we could just sit by the lake, but it’s too difficult for him to leave the house now.

I wish I could just be Todd’s wife and friend, without being his caregiver and nurse.

ALS has conditioned me to expect less. But on Sunday, I was happy. All day. It was my birthday. I went for a walk and picked thimbleberries and blueberries in the woods near our house. My daughter baked a cake, my son grilled barbecue chicken, and we had a couple of people join us for dinner.

A close-up photo of pink and red thimbleberries growing amid lush vegetation in northern Michigan. Just below the berries is a small, delicate white flower.

Thimbleberries. (Photo by Kristin Neva)

Todd and the kids gave me a new game called Blank Slate, in which one player draws a card with a prompting word, and everyone writes down a word to complete the card. For example, “Micro___” could become “micromanage,” “microwave,” or “microchip.” Players with matching answers get points.

While everyone else wrote down their word on a card, since Todd is paralyzed, he just thought of his word and was the first to say his answer when we went around the circle reading what we wrote.

We laughed a lot. It was a simple and happy day.

I’m not sure how to want less on a daily basis, but it was a nice respite to experience a day where I had everything I wanted.

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.


Karin Stitsinger avatar

Karin Stitsinger

I wish you the best


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