“All our times have come Here but now they’re gone Seasons don’t fear the reaper Nor do the wind, the sun, or the rain We can be like they are.” I was 18 years old when the band Blue Oyster Cult released the song “(Don’t Fear) The Reaper.” Coinciding…
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“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, and I’m like, ‘What’s this?’” Sara continued with increasing volume: “Oh, that’s my father’s foot! My father’s foot has…
“All the Bush League batters Are left to die on the diamond In the stands the home crowd scatters For the turnstiles.” Twice in my post-ALS life, Neil Young’s song “For the Turnstiles” has struck me smack dab in the center of my forehead. As the dust finally settled…
When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…
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When Fear Gives Way
“How are things going?” a friend asked. I explained that I have been concerned about my husband Todd’s breathing. He’s been waking up with headaches, which could be a sign that his breathing strength has declined due to ALS. He might benefit from noninvasive ventilation, but doesn’t want…
“Well I don’t know why I came here tonight, I’ve got the feeling that something ain’t right. I’m so scared in case I fall off my chair, And I’m wondering how I’ll get down the stairs. Clowns to the left of me! Jokers to the right! Here I am stuck…
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The Power of Puns
“Hurry! I’m having a pee-flex,” my husband said as I put on disposable gloves. I grabbed the urinal and held it for him. Todd invented the word pee-flex to describe the sudden urge to go once he drives his wheelchair into the bathroom. He is paralyzed from ALS, so…
“As I was walking down the street one dark and dreary day, I came upon a billboard, much to my dismay. The billboard was all tattered from the storm the night before. The wind and rain had done their work, and this is what it bore: ‘Drink Coca-Cola cigarettes, smoke…
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How I Socked It to ALS
Last week for me, the letters A-L-S stood for “A Lot of Socks.” I tackled a project that would make living with amyotrophic lateral sclerosis easier for me right now, for my future self, gave me peace of mind, and yes, it involved socks. It all began when I was…
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The Limits of Marriage
Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…
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