Here are a few more mileposts along Sid Hall’s journey with ALS. As of 2025, Sid is still surviving.
In the next several years, two great things came into Sid’s life: Linda and Bumblebee. Linda was Sid’s first caregiver and she was a remarkable one. She never told Sid that he couldn’t do something and they had a string of improbable adventures. Sid also graduated from his walking poles to a portable wheelchair he named Bumblebee. Often, Linda pushed Bumblebee as they walked, and Sid jumped on or drove Bumblebee when his legs began to give out.
For several years, Sid traveled to a hospital five days a week (with a few days off in between) to have infusions of Radicava, one of the few drugs for ALS. It was a life of needles and injections and finally a port in his chest. The drug may or may not have helped, but Sid became good friends with all of his nurses. One pretty nurse wearing a mask asked him if he had been weighed recently. Both Sid and his caregiver thought she said ‘laid’ instead of ‘weighed.’ The laugh got mileage for a year or so.
The next few years saw three grandchildren born and Sid remained very active with his family and friends, although he could not travel anymore and lost the use of his arms and legs. Still, he believes these were some of the most fulfilling years of his life because of the people around him. He moved from Bumblebee to a high-end motorized chair named Donkey, and a red van with a ramp to take him places.
Sid completed two books with the help of assistants. Caregivers also helped him sift through decades of poem drafts, documents from his publishing business, miscellaneous writing and memorabilia. He donated his “papers” to the library at New Hampshire’s Keene State University.
In 2024, Sid’s wife Margaret again organized a very successful fundraiser. Sid rode Donkey on an ALS walk through the streets of Concord, New Hampshire, with dozens of his family and friends. Sid got to talk shop with other ALS cronies and their families.
ALS concentrates the mind. Sid reasons that if he can’t control his body there is certainly no reason to give up control over his mind.“I like to pretend I am Stephen Hawkins,” says Sid, “and that I am likely to turn into a theoretical physicist at any moment. I am sorry to be winding down my days in a very dark time. The answer for me is ‘a life of mind.’ I think one should read the best books, worship Bach, watch strong movies, eat great food, and make mischief.
“Also, read Mark Twain at every opportunity. The writer had only one serious flaw—he could not write a bad sentence. I call my complete Mark Twain collection my Twain Set and I have traveled far on board.”
Sid’s World is now a concoction of caregivers, Hoyer lifts, washcloths, nose and mouth suction machines, respirators, cough-assist machines, vitamins and supplements and a parade of people to feed him. There are many difficult days, but there are also wonderful people—and they keep him going.
