When I met my late husband, Jeff, we lived exactly 7 miles apart by car, our respective homes separated by the Potomac River just south of Washington, D.C. The bridge that crossed it nearest to our places featured a wide and safe bike lane that separated cyclists and pedestrians from…
Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…
It takes courage to reach out to a complete stranger and ask for their help. I know, because I’m that stranger, and the ones seeking my help are people newly diagnosed with ALS. But the good thing is, we’re not strangers for long. That’s because I try to make…
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…
Among the many challenges I experienced during my early months with ALS was the eerie prophecy of a life expectancy of two to five years following diagnosis. Besides putting the brakes on all of my future hopes and dreams, it made my brain feel worthless. I’d ask myself,…
Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…
Were you able to watch the recent Paris Olympics? I did, and I’ll admit I tuned in nearly every day. But I wasn’t always such a die-hard fan. Oh, I used to look forward to watching them — until I was diagnosed with ALS in 2010. Abruptly, I felt…
I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and…
A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…
Those crazy, runaway thoughts. When I was young, I used to have them all the time. That’s because I didn’t know the whole story about certain things, so my mind would invent the answers. While growing up, I learned the value of having all the facts, and my crazy…
