Category Archives: Phyl’s Story

A Thanksgiving message from john

“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.

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Our celebration of Phyl’s life

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 my) grave site in Wildwood Cemetery on October 4, 2020 – Phyl made the lovely blue urn herself.

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.

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CHange in Plans for the Walk-a-thon

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.  

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After Two Months….

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. 

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Our Journey with ALS

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

Navigating those Big Transitions in Life

Phyllooks2Everything looks the same – and nothing feels the same.  My wife has died.  The center of our family has been ripped out leaving the rest of us to hold onto each other, still alive –  but without our heart.  Nothing makes much sense in my world without Phyl.  The searing pain appears unexpected from time to time, and then fades back into a dull ache.  And the worst part is that the world seems to look sort of normal.  But nothing feels normal.  Nothing feels right.  Everything has changed…

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The First Two Weeks

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Phyl’s spirit was more grand than the Grand Canyon….

I read somewhere that the first two weeks after the loss of a spouse was the “easy part” since there are so many things to do, visitors, cards, practical arrangements, and just plain “busyness.”  I’m not sure it was “easy” but I can attest to the “busy” part.  Family and friends have been keeping me company while I try to navigate the early days of grieving.  Here is a brief update….

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Obituary

Phyllis Ann Ebner Gerber passed peacefully on June 15 following a 5-year illness.  She was surrounded by flowers, her family, a rose scented candle and Beatles music.   Phyl, as she was known to everyone, spent her early years in West Haven, CT and at a young age moved to Great Neck, NY where she attended Saddle Rock Elementary School and Great Neck North Junior and Senior High Schools.  As a 10th grader, she met John Gerber who was a senior, and began a 50+ year relationship.  Phyl attended the University of Hartford for two years before marrying John in 1973.  They lived in Ithaca, NY for 5 years where Phyl learned to become a potter, often selling her wares at local craft fairs.  They moved to St. Croix in the U.S. Virgin Islands in 1978 where Jacob was born and then to Urbana, IL in 1979.  Phyl loved her life as a fulltime mom in Urbana, where Brian and Jeremy were born and her boys spent their early years.  The family moved to Amherst, MA in 1992, where Phyl worked as a potter and a teaching assistant for special needs children at the Wildwood Elementary School until she retired in 2013.

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The letter I never wanted to write

TO:  Family and Friends….

This is the letter I never wanted to write.  Your friend, family member, and my wife of almost 48 years passed away peacefully last night, surrounded by her children, lots of flowers, a rose scented candle, and Beetles music.   Phyl just ran out of time.  Her breathing has been getting worse for the past year and finally her lungs quit on her, even with the mask and respirator.

The past two weeks have been tough as she struggled to breathe and lost her ability to communicate.  When she experienced air hunger, we gave her morphine which gave her some relief.  Yesterday morning I helped her dress and took her into the dining room in her power wheelchair.  She had three doses of morphine before she got comfortable, but this also made her groggy.  We didn’t think she was aware of what was going on around her, but when she heard our grandchildren playing at the dining room table Phyl perked up and waived to them weakly.

We kept her comfortable all day with morphine.  She seemed to perk up when her brother Howard call, but she slept most of the day.  Her breathing became weaker and weaker all day and we knew she was transitioning when her oxygen level began to drop.  Jake, Brian, Jeremy and his wife Sam, and I held her hands, rubbed her legs, talked to her, and cried until her breathing stopped altogether at 2:45am.  It was a relief as she was suffering.  She passed very peacefully.

Phyl will be cremated and we are planning a celebration of life sometime in the fall, hopefully associated with the ALS Walk-a-Thon in Look Park.  More on that later.  We’ll also ask for donations in lieu of flowers etc. for the ALS Association of Massachusetts which has been very good to us.  Here is the link if you would like to help;

http://web.alsa.org/site/TR/Walks/Massachusetts?team_id=386635&pg=team&fr_id=14146

I’ll tell you more in another letter, as I’m exhausted and can’t think.

Love to you all…..

John


Click here for Phyl’s obituary


After her passing……  a few posts about John after….

June 28, 2020 – The first two weeks

July 4, 2020 – Navigating Transitions

August 15 – After Two Months

Not much time left

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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.

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