I am Deb Paust

a family member of someone we've lost to ALS,
someone who cared for a person we've lost to ALS


My ALS love story began when I met the man of my dreams in 1980.

My ALS love story began when I met the man of my dreams in 1980. He was a very young man at the time but, I knew he was special and definitely had potential! I was 16 and Tim was 17 and he wanted to take to me the Junior Prom but there was a slight problem…I was dating someone else. Always persistent and always a gentleman, Tim started showing up at my house and then starting coming to my dance shows and track meets, he even came to watch me scoop ice cream when I was working at Baskin Robbins. One night he came by to tell me that “he would be honored to escort me to the prom.” Well, his charming and persistent ways paid off because I broke up with the other guy and went to Prom with Tim. It was one of the happiest nights of my life, I fell in love for the first time but it wasn’t the last.

The first time you fall in love it’s unforgettable, you feel like you could burst from the abundance of joy and you’re just not sure your feet are still touching the ground because you feel so light and carefree. Sure, the first time I fell in love with Tim he was young, charming and so handsome. Even the cheesy brown Prom tux still looked hot on him, but I fell in love with my Tim many times over during our 34 years together. After Prom, Tim brought me a rose from his mother’s garden every date that summer until there were no more roses left and for my birthday he bought me a corsage with 17 sugar cubes to make it a sweet 17th birthday because he didn’t know me for my sweet 16. Falling in love was fun!

Love changes as relationships grow and so do the circumstances that make you fall in love again. There were still feelings of joy but there were new elements like feeling so safe and secure the times Tim reassured me I would be okay when I was certain I wouldn’t be. Elements of responsibility and pride that I’d fall in love again just by the way he looked at our babies when he held them or when he displayed the patience of a saint and the wisdom of a prophet for all his teachable moments with our kids. Times like Tim holding me tight right before a very predictable and dramatic dip at the end of a dance at his work Christmas parties. He always seemed sure I was surprised by his suave move AND that he was coolest guy on the dance floor. Although I pretended to be surprised each year he threw down his dramatic dip move, he was definitely the coolest guy on the dance floor with a move that made me fall in love AGAIN.

Falling in love with the same man over and over was a rare blessing and I knew it then as well as I know it now. Of course, we had our rough patches and plenty of times when we didn’t like each other very much but this is a love story… so I won’t share those chapters but I will share this. I truly believe there is a depth of love you only get when diagnosed with a terminal disease. As much as I wish we could have lived our lives with the level of love we had before ALS, I know we were blessed with 2 years and 2 months of that deeper love filled with new and very personal falling in love again moments.

As the unpredictable ALS clock ticked away, nothing else mattered but making the most of our time together and letting that deep love soothe our broken hearts, calm our fears and let us laugh at the cruelest adversities. What was true for us was the deep love we had for each other and the deep love of our children, family, friends and God lifted us on the darkest of days. Deep love empowered humor, compassion, comfort, respect, dignity and finally peace.

Sometime near the end of Tim’s life, he asked me to cue up our song, Love is the Answer by Todd Rundgren. That request was followed with several more in order to stand him up safely wedged between two beds so he could dance with me one more time. It was in the middle of the day, the sun was shining and my handsome husband swayed with me as I held his arms around me and I’m sure you guessed it, I fell in love again.

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