Reminiscing about our pre-ALS days brings joy

A trip down memory lane prompts lots of laughter and love

Kristin Neva avatar

by Kristin Neva |

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A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS.

My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories from two decades ago. All three of us were living in Milwaukee at the time and belonged to an early career group at the same church. We tried to recall the date of a kayaking trip we had taken.

“I’ll check ‘The Dating Report,’” I said, and went to retrieve it off a shelf in my office.

My daughter and her boyfriend took an interest in the conversation when I came back with a bound book that Todd had made chronicling our romance. We met in January 2002, started dating in April, and got engaged in December. As a Christmas gift, Todd compiled the emails we exchanged that year and included photos from some of our activities. I flipped through it, and there we were in our kayaking gear on June 14, 2002.

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A split-second decision

I read excerpts from the report, which reminded us of other stories. Five months after we started dating, Todd told me he loved me. “Thank you,” I replied, not yet ready to reciprocate the sentiment. I wasn’t ready to commit, which required at least a year of dating. Nonetheless, we began talking about getting married the following summer — hypothetically, if things worked out.

A month later, I was at a thrift store and saw a woman looking at a wedding dress. “That’s a Carolina Herrera — a $5,000 dress,” the shopper told her friend before moving on to the next aisle.

I took a look at the designer dress the woman had passed on. It was my size, so I took it to the fitting room and tried it on. It fit, but I was uncertain — not only about the dress, but also about marriage.

When I left the fitting room, the woman approached me. “I was going to take that dress,” she said. Well, that’s not how thrift store shopping works. My competitive nature came out, and I held on to the dress.

“Are you getting married?” the woman asked. I had to give her an answer, so I made a decision on the spot. “I’m getting married next summer,” I declared.

That evening, I met Todd at his condo. “I bought a wedding dress today,” I said. “And I love you.”

Upon hearing the story, my daughter laughed and her boyfriend shook his head.

It’s fun to remember those days, to relive them with Abby, and to share them with our daughter and her boyfriend. Our daughter was only 4 years old when Todd was diagnosed, so she has few memories before ALS. Her boyfriend has only known Todd since he has been paralyzed, on noninvasive ventilation, and homebound.

At this stage of the disease, our daily life is mundane. It takes a long time to accomplish basic tasks of daily living such as toileting, dressing, eating, and showering. The present is difficult. We don’t look forward to a future with disease progression and eventual death. But there is joy in remembering the past.

We reminisced about our engagement story and how Todd had gotten the return date wrong for our honeymoon and we showed up at the airport a day after our plane had left.

At one point, Abby started recording Todd and me with her phone, so now I have 10 minutes of footage of us laughing and telling stories from our early days. It was a time filled with joy and little sorrow.

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.


Dianne Knox avatar

Dianne Knox

Thank you so much for sharing this beautiful heartwarming story ……and thank you as well for your thoughtful sharing of your life with Todd in your many other posts . I was diagnosed withALS at the age of 59 years after my children were independent,so totally feel compassion for anyone dealing with this while still raising a young family . Your courage,positive outlook and honest conversation are very inspiring.Thank you and hope that you and Todd will continue to enjoy as much as you possibly can each day !


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