Amyotrophic lateral sclerosis (ALS) - a ruthless and certain killer

Whenever anyone in my synagogue community dies I get an email from the rabbi. I read today’s email at about five in the morning that Jill Cherneff Laverty died – probably yesterday. I had heard last week that it wouldn’t be long, but even so I definitely wasn’t ready for the news. Jill had ALS and she lived over six years with it, much longer than most ALS victims, but still, it’s hard to take.

Persons with ALS have a loss of muscle strength and coordination that eventually gets worse and makes it impossible to do routine tasks such as going up steps, getting out of a chair, swallowing and then, finally, breathing. ALS does not affect the senses (sight, smell, taste, hearing, touch), and only rarely affects bladder or bowel function, or a person's ability to think or reason. That’s why I've heard that it must be like being in prison or a coffin. There is no known cure for it. It is a ruthless and certain killer.

I understand that Jill’s first symptom was difficulty in speaking. Ironically, her voice is the very first thing I ever experienced about her. I was downstairs getting dressed and I heard her voice from upstairs at our dining room table talking to my husband, Bob. She had come to pick up her then fiancé’s son who was playing with our young son Ben – probably back in the early 1980s.

It breaks my heart for what she had to endure with that disease – the gradual but steady progression from a vibrant, active, and beautiful women to one who ended up not being able to move any part of her body.

It also breaks my heart that we were no longer friends. She decided to break our connection after her son Geoffrey was killed in an auto accident, probably because I brought along too much reminder baggage. I was told she severed relations with several people in the year after Geoffrey died.

But it still hurts. We went back a long way. We knew Jill and Rocky, her husband, before they were married. We were invited to their marriage dinner at the home of his parents. We went to the desert together, we had dinner at each other’s homes, and our families celebrated Hanukah together many times. We used to play tennis, take walks on the Strand in the early mornings, and when I worked in real estate I represented them in a purchase of a home. Plus, I make her recipe for potato pancakes every year at Hanukah time. Jill was a wonderful cook.

Jill, Geoffrey, and my mother, Hanukah, 1984

So, it also breaks my heart to know that I missed being with her during the most crucial time of her life, the progression of her illness. I’m glad to say that she had a group of friends who came by regularly to play scrabble, discuss books, and bring in meals. I’m just sorry I wasn’t one of them.

And now I wonder if I should attend her funeral. Perhaps it will bring closure for me – a chance to say a proper goodbye. Certainly, she can’t tell me to leave.