One morning last week, I turned on my phone, but it powered down almost right away. I turned it back on and checked the battery. It was at 0% after being plugged in all night. I just had the battery replaced the previous week, and now the phone wouldn’t charge…
Joyful Sorrow - a Column by Kristin Neva
I’m weary after 13 years with the ALS of my husband, Todd. I started therapy in hopes that I’d get some help. At our first session, I told my therapist that I’d like homework, such as a journaling prompt. A couple sessions in, she pulled out…
After my husband, Todd, was diagnosed with ALS, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with two small children? How would they cope with the loss of a parent? What would I do…
When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to…
A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could…
I’ve lived in the shadow of my husband Todd’s ALS for the past 13 years. My days have been clouded by the bitter reality of knowing that life will only get harder until it’s over. The daily stresses of my caregiving are intense: clearing his airway when he…
“Find your own Calcutta. Find the sick, the suffering, and the lonely, right where you are — in your own homes and in your own families, in your workplaces and in your schools. You can find Calcutta all over the world, if you have eyes to see.” — Mother…
Last week, I set my husband, Todd, up on his computer before heading out for my weekly ukulele group. It’s difficult to leave my husband for long, because he’s paralyzed by his ALS. But my class lasts only an hour and I’d be less than 10 minutes away. In…
While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago. It’s not because we don’t have a good…
We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…
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