“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They will live forever in your broken heart that doesn’t seal back up. “

Anne Lamont

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TO:  Friends and Family

Every once in a while I look back in my journal to see what I was thinking and doing one year ago.  On my birthday last year, Phyl and I drove to a farm store in Westhampton where she said they made the best whoopie pies!  She had a hot dog and a whoopie pie and seemed to enjoy the day.  But that evening she broke down in tears, according to my journal, and cried “I hate my body.”  She had lost most of her physical abilities by that time and needed help with everything except eating, talking and driving her power chair (and these would all go within the next 6 months). I wrote that I felt helpless. The next day she was up and ready to go again.

Phyl was amazing the way she would continue to bounce back from regular and continuing struggles and defeats.  Every time she lost another ability, it hit her hard.  We cried together at night and the next morning she was smiling and ready to go again, trying to figure out how to adjust to the most recent loss.  She demonstrated a resilient attitude that I didn’t appreciate at the time because I was so worried about “what’s next?”  My job was to be prepared for whatever she needed.  

Thanksgiving was approaching and I asked her to write a letter to her network of friends and family.  It took her hours, since she had little control of her hands.  Nevertheless, she wrote in a letter we sent to you all…. “I am grateful for each and every one of you. I’m thankful for the walks around the neighborhood, the prayers, the outings, the problem solving to make situations work for me, the kisses and hugs, the food, the txt, the phone calls, my new bathroom (thanks Dad), the chats on the deck (some serious and some hysterically funny) and the shoulders to cry on.“

On Saturday, October 4, 2020, my family and I passed the urn holding Phyl’s ashes around and then placed it in the ground. We dropped flowers around the urn and said goodbye to her physical form but we hold her spirit in our minds and hearts.

Phyl and I had decided upon Wildwood Cemetery many years earlier as it is a beautiful location and right across the street from the school where Phyl worked for 10 years.

We invited 50 of our closest friends and family members who lived in New England or New York to join us. The state COVID regulations restricted outdoor events to no more than 50 and anyone from outside of our region had to quarantine for two weeks, so were prevented from joining us. While we were sad that we had to put limits on participation, we wanted to try to provide an environment where people were safe.

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.