OUR SON, JEREMY, loved all kinds of physical activities, like snowboarding, skiing, running, rock climbing, and especially sailing.
In the spring 2017, at age 37, he developed what he thought were painful shin splints after the Brooklyn Half Marathon. As time passed, he experienced foot drop (an inability to keep the foot from hanging down when stepping up a curb or stair), muscle cramps, weakness, and difficulty speaking and swallowing.
He ended up using crutches because he kept falling on the streets and sidewalks. No one knew what was wrong, so my wife, Ronnye, and I took him to the Mayo Clinic in January 2018. That week, he received the diagnosis of ALS (amyotrophic lateral sclerosis)—a death sentence. The usual cause of death is respiratory failure within two to five years after diagnosis. One of the doctors that week told him to get his affairs in order.
Jeremy’s decline
Jeremy was a very successful salesman for a number of big-name pharma companies, medical device companies, and software companies. His last place of employment was selling software platforms to the banking industry. He tried to go on business trips, but his illness made it increasingly difficult.
Because his wife didn’t want to take care of him, Jeremy moved out of his apartment and into our house in June 2018. Six months later, he went on disability, unable to function anymore.
At the same time, I retired from the chemical industry after working 40 years, so I was able to be a full-time caregiver, in addition to my wife and Jeremy’s girlfriend, plus a home health aide.
Jeremy went from crutches to a walker to a push wheelchair to a power wheelchair. Initially he could drive the power wheelchair himself, but after a short while he couldn’t, so we had to drive him with a joystick mounted at the back of his wheelchair.
He had bulbar-onset ALS, a form first affecting the muscles needed for speaking, swallowing, and breathing before progressing to the limbs. This type tends to progress more quickly than limb-onset ALS. As the disease progressed, he started dealing with spasticity and twitching, uncontrolled laughter or crying, paralysis, loss of speech and the ability to eat, and, later on, head drop. He also experienced depression and panic attacks.
Jeremy did everything he could to beat the disease. He and his girlfriend spent many hours researching anything that might halt or slow progression, including a variety of imported treatments, a number of clinical trials, stem cell procedures, and homeopathic remedies. Despite these efforts, he experienced no lasting changes.
In mid-October 2021, an ambulance took Jeremy to the hospital ER because of breathing difficulties. He had a tracheostomy, but he was miserable. One lung had collapsed. It was infected and filled with thick fluid. He needed at least 40% oxygen to function. He knew his time was up and begged to die.
On October 29, 2021, hospice was initiated: the doctors switched to regular air, and then they began heavy IV doses of morphine. He was gone in about an hour. We watched the blood drain from his face the moment his heart stopped.
Never Say Invisible
Six months after his diagnosis in 2018, Jeremy started writing his memoir, Never Say Invisible: A Memoir of Living and Being Seen with ALS. He relied on an eye-tracking device to write it, but lost the ability to use it in mid-2021 before he could completely finish the book. Sandra Jonas Publishing, a company that signed with Jeremy before his death, worked with us to finalize the book and release it.
His memoir is an account of his ALS journey, but more importantly, it shines a light on the many difficulties people with disabilities face because society overlooks them.
Jeremy advocated for the disabled and ALS community as much as he could, despite the progression of the disease. He was invited to attend the ALS Association Advocacy Conference in Washington, DC, in the summer of 2019. He and a delegation from several ALS Association chapters lobbied successfully for Congress to end a rule that forced people with ALS to wait five months before receiving Social Security Disability Insurance benefits.
Jeremy also testified in front of the New Jersey State Legislature and asked for more money to be allocated to ALS research. He believed that advocacy was so critical. “Advocate for yourself, advocate for your loved one, and advocate for what you feel is right,” he would say.
While facing numerous physical symptoms, he started a blog that shares his book’s name. Topics range from designing an accessible home to medical marijuana and creating a self-care plan.
When Jeremy could still travel, he went to Colorado to find marijuana that might ease his symptoms. We administered an extracted form of cannabis through his feeding tube several times a day to manage pain and anxiety. Jeremy and two partners received a patent for a device that automatically grinds, heats, and collects smoke for people with disabilities.
“He savored every minute,” his friend Julie Cohen said at his memorial service in November 2021 that we held in our home.
Jeremy’s perspective is evident throughout his memoir:
“We can’t live our lives as we would like, but it’s up to us to make our lives as fulfilling as we can,” he writes. “Don’t just accept what is—think about what you need, what you can do for yourself, but also what you need others to do for you. If we all do this together, we can make a change.”
