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My 14-year-old daughter woke me up at 4:45 a.m. “Do you hear that?” “Hear what?” I asked groggily. “You don’t hear anything?” Panic rose in Sara’s voice. “No.” I sat up. “You don’t hear that?” she said, just after I too heard a high-pitched chirp. “Yes,” I said. “It sounds…

“Baby, you can drive my car …” I was reminded of that Beatles lyric last Sunday while listening to my pastor’s sermon. Titled, “Taking the Back Seat,” the sermon’s theme was about subordinating our desire for control in favor of…

Spring — the kickoff for a multitude of ALS awareness events — is just around the corner! Many are already gearing up, and this is my signal to dial up my mental resilience. It helps me support their messages while keeping a firm hold on my sense of me.

After three weeks of my husband, Todd, being cloistered in our home with a cold, we ventured out Saturday for Michigan Tech’s last home hockey game of the season. Our Huskies took on their archrival, the Northern Michigan Wildcats. Games between the two teams usually sell out because…

Oh, how I wish living with ALS weren’t so murky: We don’t know its cause, we don’t have a cure, and we measure symptom progression by way of 12 questions. I can’t do anything about the cause or cure, but I’m up on my soapbox (the one with the…

I didn’t react when a spine care specialist mentioned ALS as a possible cause of my husband’s weak arm, because I didn’t know what ALS was. Todd and I talked about daily life during the drive home from the appointment, and it wasn’t until later that evening when the kids…

“I don’t want to belong to any club that would have me as a member.” That sentiment, expressed by comedian Groucho Marx in 1949 about his affiliation with a particular social organization, was exactly my reaction in learning of…

The other day, I was chatting with a friend about Rare Disease Day. Wait, what? You don’t know about Rare Disease Day? Well, don’t feel bad. Last year I missed it, thinking it was just another ho-hum awareness event. But I’ve learned the value of events such as this…

One of my biggest concerns is how my husband’s ALS will affect our children. They were both under 5 when Todd was diagnosed and while they are growing up, their father continues to lose strength. A couple of years into the disease, I was fastening Todd’s seat belt as our…

“Lately it occurs to me what a long, strange trip it’s been.” –Grateful Dead, “Truckin’“ Last month, I quietly acknowledged the 13th anniversary of my ALS diagnosis. As in years past, I mentioned the occasion’s passing to no one. Instead, the…