TO:  Family and Friends

Perhaps you have heard about the Governor of Massachusetts’ new COVID rules, but if not…. well, they seriously buggered up our plans for the ALS Walk-a-Thon scheduled for Saturday, October 3.  The new rule is a limit of no more than 50 people for an outdoor event.  We had more like 100 people hoping to attend this fundraiser, celebration, and walk for Phyl’s ALS team, Phyl-in-Tropics in October.  Frankly, I was getting nervous about this event and the new rules made our decision for us.  

August 15, 2020

TO:  My Family and Friends

FROM: John

I’ve decided to record my thinking from time to time as a way to both clarify my own thoughts and create a record of where I’m at now that Phyl is gone.  I recorded some thoughts “after two weeks” and this new one is “after two months.” I know that you all are grieving Phyl’s absence too, so I hope this isn’t just an unwanted reminder of something you’d prefer not to think about.  If so, stop reading…

August 15, 2020 – two months after Phyl’s death – how am I doing?

I know that I’m one of the lucky ones.  I had someone who loved me for more than 50 years.  It seems like a lifetime and it was (almost)… for Phyl.  We met when she was 15 years old and she died when she was 66.  She wasn’t ready to leave me.  She told me so.  The day we were driving home from our second neurology appointment, the one that confirmed she did indeed have ALS, she asked me to pull off the road.  She cried…. “I don’t want to leave you John.  I’m not ready.  We were supposed to get old together.”  We both cried for a while and then I drove home. 

Phyl transitioned to the spiritual realm on June 15, 2020, after dealing with the symptoms of ALS for about 5 years.  After two years of trying to figure out what was causing the symptoms of weakened muscles, she was diagnosed on March 15, 2017.  For the past three years, Phyl asked me to keep her friends and family informed about the progress of her disease and our efforts to “live well with ALS” as she called it.  The following is a record of my email messages and blog posts which were password protected up until now (Phyl didn’t want to read these posts).  I’ve  added some photographs.  The links below provide a record of her courage and her resilience in dealing with what is always Continue reading Our Journey with ALS →

Continue reading Obituary →

TO:  Friends and Family…

My wife of nearly 48 years, your mother, sister, daughter, cousin, or friend is dying of amyotrophic lateral sclerosis.  The person I have loved the most, hurt the most, and shared the most joy, the most challenges, and the most adventures with is leaving me – and I don’t want her to go.  Phyl has been the center of our family, the hub around which our holidays and family events all revolve – and we don’t want her to go.  She has been a good friend to many of you, some of you have known her for more than the 50+ years that I can claim – and you don’t want her to go.  But for Phyl who is suffering emotionally and physically, who has lost so much – I think it time that we to begin to let her go.

As some of you know, the air hunger caused by poor (no) lung function has increased to the point that she is getting small doses of morphine most of the day to treat or prevent air hunger.  While this reduces the anxiety of not being able to get enough air, it also makes her sleepy.  She is sleeping much of the day and night.  When she has visitors, she struggles to stay awake to listen to the conversation but after a while this makes her fidgety and anxious.  Since she can’t talk and her hand movements are limited, she has difficult time telling us what she needs.  We play a guessing game that seems exhausting to Phyl and sometimes she just quits trying to tell us what she needs.  Sometimes she moans quietly (a few nights ago it went on for 3 hours) and we can’t figure out what is wrong.

Continue reading Not much time left →