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. 

Three years after this moment, I tear up as I write these words.  I didn’t want her to leave me.  I was not ready.  I have spent the past 3 years focused entirely on her care.  My job was to know what she needed next and to have it ready when she needed it.   It began with a second handrail we put on the staircase to the second floor of our home – so she could use both arms to pull herself up when her legs weakened.  She didn’t want that handrail!  But she appreciated it when it was there.  This was her pattern for just about every accommodation we made to her illness.

Hiking sticks, step stools, a rollator-walker, a bed that inclined, the wheelchairs and ramps, an accessible van, meds, an experimental drug, more meds, various communication devices, a doorbell to ring when she needed me, and eventually hospice.  These were a few of the things I had to learn about and have ready when she needed them.  And she didn’t want to talk about them or know about them in advance.  This was how she coped.  I felt good when I was prepared, even though it meant Phyl had lost one more ability.  I was talking with my brother Dan recently about this when it struck me that the one thing I didn’t plan for was what would I need when she was gone.  I was not prepared for her death.

I thought my 12-Step Program would help and indeed it taught me to live one day at a time, pray and meditate, and practice acceptance.  I thought this would help me adjust to the time when she was gone.  And it did help.  But it wasn’t nearly enough.  I wrote in my first two weeks “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.”  And I was indeed busy. But what happens after everyone goes home, after the sympathy cards stop coming, after the meal deliveries slow down, after the phone stops ringing “just to say hello.”  What is that like?  How will I live alone – for the first time in my life? 

So, I’m okay alone (mostly).  I have Riley, photographs and memories, the home she created with mermaid statues all over the place, our family, and my work.  I don’t need a lot of people all the time – I just want Phyl.  For fifty years she was “my person”, the one who I told about my day, with whom we planned everything from a trip to the grocery store to a trip to a tropical island.  And for the past three years we were rarely apart.  We did everything together.  When she went off with her girlfriends or I was teaching on campus, we texted back and forth.  We always knew where the other one was.  We were connected by a tether that extended over the space between us.  When we sat side by side, she held my leg for security.  She said I was her hero.  And caring for her was the most important job of my life. But I couldn’t stop the ravages of her disease.  In the end, she had to go.  So, whats it feel like to be without “my person”?  I’ll try to tell you.

My day… each day…. is one long “without.”  No matter what I’m doing, I am aware that I’m doing it without Phyl. The loss of my best friend and the focus of my life is indescribably hard.  The world of grief is an unpleasant place to live, yet that is where I reside 24/7.  The feelings range from intense emotional pain to a dull ache. Grieving is disorderly.  It can’t be predicted or scheduled.  A period of a few days of relative calm and merely low level sadness can be disrupted suddenly by a freight train slamming into me.  I can be blindsided with pain at any time and I’m back on the couch sobbing uncontrollably.  Something is squeezing my heart and the pain in my chest creates a feeling of nausea in my stomach.  This intensity can’t last as it is just too exhausting.  Thank God.  But it is followed by an emotional hangover and a feeling of lethargy.  I just feel tired and unmotivated.  But eventually, because nothing is permanent, I emerge back into that feeling of merely low level sadness. 

Oh, but then there are the grandchildren.  I can get truly excited about the prospect of playing with these kids.  Part of it is my acute awareness that their GG can no longer play with them.  And the sense of loss that I feel over that awareness is itself painful.  I can’t replace her but I can do my best to do some of the things she loved to do – for both of us.  I believe Phyl loves to see me playing with our grandchildren.  She smiles at me from wherever she is and holds me in her heart with love. I can feel her gentle smile and the love between us that continues beyond death. Love doesn’t end.  That tether that was a physical feeling of connection extending over space seems to also extend over time – at least for now. 

But now that I’m not a full time caregiver, I’m not quite sure who I am much of the time. I know who I am when I’m texting with Noah, pulling weeds with Colin, swimming at the cove with Elena, or just holding our beautiful Lucia in my arms.  There is joy in the world when I can be Pop John for a few hours.  I love this job, but it’s not full time.  And I must return to my own home, my own kitchen, my own bed, and my own grief. 

And then there are the memories triggered by different places.  I’m writing this from the beach house we rented last year in Rhode Island.  There are so many memories of Phyl here in her power chair (chasing Elena around the yard), still able to communicate and enjoy eating.  Lobster!  She loved lobster!  So I go pick up lobsters at the same fish market we always go to in Galilee… and there it is, the memory of the fish market that Phyl and I always go to.  And the same beach.  And the same grocery store.  And the same (fill in the blank)….  and she is not here.  Sometimes I think it might have been a mistake to return to the same beach house, but there is something healing about facing my fears, feeling the pain, and getting through to the other side.  Everything seems to hurt more the first time I experience it without her.  Everything!

And then there is the future.  My future, our future got hijacked by ALS.  We were supposed to get old together.  That was our plan.  Now the future is uncertain (well, it always was but we can convince ourselves otherwise when things are going along “normally”). The dream of being together as we age is gone.  Any sense of anticipation for future events is dulled by the loss of the person who was supposed to share it with me. Nothing makes sense any longer.  At the moment of her death the world changed, my world changed, and the world of  “without” began. 

I can’t be a grandfather full time, although that is truly my favorite role right now.  And I love hanging out with my sons and their wives, and my brothers.  But none of that is a full time job.  I need to find something that engages me and makes me want to get out of bed in the morning.  Right now, its walking our dog Riley.  He truly won’t let me sleep!  And I do love my work, but it’s not really all that challenging.  I’ve been doing it for a long time, it pays well, and I’m good at it.  But it’s not as motivating as it once was.  Nothing is as motivating as the sense of purpose I had as caregiver for the most important person in my life.  I suspect nothing ever will again. And I will have to live with that. I will have to live “without”.  But I’m not sure I really want to.  There are times when I just don’t want to be here without her.

Truthfully I’m not afraid to die, especially now that she is not here and in fact, I’m kind of curious about it.  Jake said to me one day, “well it either is nothing and then it won’t matter or it is something really interesting.”  So I’m not afraid to die but I’m not planning on it anytime soon.  With my luck I’ll probably live to be a grumpy old man. But nobody really knows.

And of course we are planning a Celebration of Life for Phyl in October as well as another Walk-a-Thon in June. This sort of work keeps me connected to her and feeling useful. And as I wrote above, I really have a good life and a loving family. And I seem to be pretty healthy. So, yes I’m sad. But I find it is possible to be sad and grateful at the same time. I am surely grateful for the past 50+ years with Phyl.

So for now at least, the plan is to get up in the morning, walk Riley, do a little work on my classes, putter around the house (or the beach this week), make sure Phyl’s gardens are maintained, go grocery shopping, pray and meditate, ride my bike, and continue to wonder “what do I do next?”  I don’t’ expect the sadness to disappear, but I suspect it gets easier to carry over time.  I can live with this feeling of “without” and still survive.  Lots of people do. 

And maybe survival is good enough for now… 

John

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To read all of the chapters in Phyl’s three-year journey with ALS, see:

Phyl’s Story

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