The phrase “stay in your lane” is often posted on signs to help motorists drive through a construction zone. It’s also a basic rule when swimming side by side in a race with other competitors. In my life with ALS, I use one of the other meanings of the…
When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program, local families “adopted” midshipmen, offering a home away from home to the students, who could come…
“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.” Todd…
I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and…
It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive ventilation nearly all the time. To make matters worse, we live in a northern climate with…
Lines from a Shania Twain song have been running through my head the past few days: “You’re still the one I run to/ The one that I belong to/ You’re still the one I want for life.” The lyrics remind me of how my husband, Todd, and I…
Before ALS entered my life, I barely noticed how easily I completed simple, everyday tasks. But living with ALS can be tiring, and it makes everything — including the little things, our run-of-the-mill habits — feel difficult and tedious. I reached the point where I contemplated giving them up…
It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…
A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an accessible home. His ALS was advancing rapidly at the time, which prompted our move. He could…
“I’m not going to write a column this week,” I told my husband, Todd. “All I can think about is that you’re sick, and I don’t know how it’s going to turn out.” Todd came down with a bug a few days ago. He’s had body chills, aches, and congestion.
