This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he examines with vulnerability and insight his life with the disease. In Chapter 11, Jeansonne, a spiritual…
“What was I thinking?” The words boomeranged around my mind as I stood frozen in place under the hot Arizona sun. I was experiencing an ALS patient’s worst nightmare: being stuck with an expanse of sidewalk ahead of me, the same distance behind me, and absolutely zero energy in…
When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him during a transfer. I dreaded making a mistake with his feeding tube. I worried about his…
The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the…
I remember borrowing a coffee tumbler emblazoned with a Royal Caribbean cruise ship logo from my late husband, Jeff, while we were dating. I wanted to take my coffee home from a visit to his house, and he reluctantly handed it over, explaining that he and his brother Steve had…
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and…
Last week I visited my dermatologist for my annual skin exam and when it was over I left his office with a brand new perspective about my ALS. I’m quite diligent about my annual medical exams — eye exams, regular ALS clinic visits, dental care, and in this case,…
A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a boardwalk trail through the woods. My husband, Todd, was able to traverse this trail in McLain…
“Keep on moving!” That’s something I tell myself every day. Since I live with ALS, however, keeping myself moving is easier said than done — especially in the afternoon, when my energy drops and I slump deeper into my chair. Oh, my, it’d be so easy to just stay…
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…
