One of my favorite authors…

newell-011215-300x300John Philip Newell, the author of Listening for the Heartbeat of God: A Celtic Spirituality, is one of the most prominent Christian teachers of spirituality in the Western world.

Formerly Warden of Iona Abbey in the Western Isles of Scotland, he now divides his time between Edinburgh, where he does most of his writing, and teaching on both sides of the Atlantic as well as leading international pilgrimage weeks on Iona. He is the co-founder of Heartbeat: A Journey Towards Earths Wellbeing (www.heartbeatjourney.org), established to expand sacred vision, deepen spiritual practice, nurture reflective community, and enable action for change.

The following is a talk he gave in Hartford, CT last year that I hoped to attend but could not while I was caring for Phyl.  Fortunately, it became available on You Tube.  I’ve linked a slightly edited (shorter) version here (click on the picture) as well as an audio-only file (since it is simply a “talking head” in video form).

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Audio Only –

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).  They are now public and I’ve edited them slightly and added some photographs to try to create a story.  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…

We all experience big and often sudden changes in life, like going to college, getting married, having children, children leaving home, changing jobs, retirement, or the death of someone we love.  These big changes in life, we call transitions.  The following is what I wrote about transitions when my family moved from Illinois to Massachusetts in 1992.  It all seemed much easier then, but I think there is still something to learn from this essay today.

John M. Gerber
July 4, 2020


life-change-ahead-sign

Navigating Life’s Transitions

Today there are revolutionary changes occurring in our society, our institutions, and for individuals that seem to come at us faster and faster.  Charles Handy’s book The Age of Unreason makes the case that “change is just not what it used to be.”  In the past, trends could be analyzed and future directions could be predicted.  This allowed for continuous, evolutionary transitions. Today’s world, on the other hand, is experiencing unpredictable, discontinuous, and revolutionary change.

While some people see this current period of rapid global transformation as an opportunity – for others it is a time of painful and reluctant adjustment to a seemingly confusing and chaotic world.  When faced with the possibility of change, most people choose the familiar – the status quo – perhaps due to fear of the unknown.

Letting go is frightening – its like jumping into a void. Henry David Thoreau seemed to be recommending the life of a change seeker when he wrote in his journal on March 11, 1859; “We must walk consciously only part way toward our goal, and then leap in the dark to our success.”

William Bridge’s book, Transitions, reminds us that all new stages of life begin with an ending.  Letting go of the familiar is the beginning of beginning and requires two things; ceremony and grieving.  We are not good at endings.  We are a future focused society always looking forward and moving on to the next thing.  When taken to the extreme, this “treadmill existence” can be pathological.  Some of us leave destruction in our wake – broken relationships, incomplete work or unfinished learning.  You may recognize this trait in friends – or perhaps yourself.

The first gift I’ll share with you is the knowledge that endings are important.  And saying the words “goodbye” is an important part of the process of moving on.  It is not an ending if you leave a situation with a “see you later.”  Use the words “good-bye” when you leave your friends at school, a job or a relationship.   Try it.

The Neutral Zone

The second gift I’ll give you is the knowledge that there is a little-discussed period of time in between endings and new beginnings called the neutral zone.  It is a period of time that may be no more than a weekend or may take years, in which you may feel lost, empty and frightened.  This is good.  The neutral zone is a real thing.  To avoid it, or to not notice that it is happening isn’t healthy.

To manage this transition period, Bridges suggests you find a regular time and place to be alone.  This doesn’t mean lying around in bed all day, but rather trying something that you might not ordinarily do – by yourself.  Some people get up early and read, meditate, walk, or just enjoy a cup of coffee in the presence of the early morning birds.  The point is to be as completely unproductive as possible and just notice how it feels.

The next recommendation is to keep a journal or perhaps to write an autobiography of your life.  The journal should be used to record feelings not to make “to do” lists.  The paradox of this recommendation of course is that the neutral zone might be a time when “nothing is happening.”  If so, write how you feel about that.

The final recommendation is to ponder the question “what would be unlived in your life if it ended today?”  What is it about you that feels to be core to how you think of yourself, that others don’t know about or you haven’t done yet.

Bridges recommends that you spend time alone in a  new environment where nobody knows you.  This may be the modern day version of a Native American vision quest.  Don’t bring a book, a radio or CD player.  No outside stimulation to distract you from just being you.   Pay attention to details.  Journal about your feelings and thoughts.  Don’t worry about being productive.  Just be.  Stay awake one entire night with the only activity keeping a fire going or counting the stars, try it.  And don’t tell anyone what you are doing.

If it feels right, plan your own symbolic acts of emptiness.  You might simply sit outside, draw a circle around yourself in the dust – and just sit.  You might write a list of all the things you wanted to accomplish in the past year  – and burn it.  You might talk to the moon or carve a walking stick.  Find a ritual that works for you.

New BeginningsLetting Go

The last stage of transition is a new beginning.  We generally celebrate beginnings as a time of opportunity – but we also recognize it as a time of uncertainty.  It is like the first step a trapeze artist makes onto a high wire crossing Niagara Falls.  The first step is the most difficult and requires letting go of both the patterns of the past and expectations for the future.

Remember the scene in the Disney movie “Finding Nemo’ when Dory and Marlin (Nemo’s dad – the clown fish) are inside the belly of a whale  – trying not to get sucked down the vortex of water that seems to lead to death?  Dory tells Marlin “its time to let go.”  Marlin struggles to hang on – afraid. When they finally can’t hold on any longer and let go, they both get sucked down into the belly of the whale  – and then shot right up through the whale’s spout  – to find themselves exactly where they wanted to be on their quest to find Nemo!  Sometimes life is just like that but you will never find out unless you let go!

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This all still seems like a really good idea!  Its much harder in practice…..

 

The First Two Weeks

grandcanyo
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….

Phyl’s ashes have returned home in an urn that she made and picked out for herself.  She made one for me too.   They have both been sitting in the basement for years with our names on them and we were not planning on using them for a long time.   Our plan was “to get old together.”  So much for our plans.  So her urn and ashes have come home and if you are a “local” you are welcome to come by to see the urn (its beautiful).  It is residing on our window sill looking out over Phyl’s beloved deck and gardens….

urb

I’m not making any plans or decisions regarding the future.  I’m trying to  live in “the neutral zone” which I’ve written about here.  Otherwise, I’ll be in Rhode Island from August 8 to 29 at the same house we rented near the beach last summer.  I have two online summer classes that run from July 6 to August 14 and our fall class schedule starts early this year, on August 24.   I’m able to do a bit of work on classes and then my stomach knots up and a sinking feeling rises as I realize that Phyl is really gone.  So I work a little bit at a time.   My most important job is keeping Phyl’s gardens weeded and walking our dog Riley.

Frankly, I’m just putting one foot in front of the other and trying to do “the next right thing.”  I learned this practice in my 12- Step kristenProgram, but our granddaughter, Elena, tells me that this particular saying, “when you are lost, just try to do he next right thing”, comes from the movie Frozen 2.  In any case, it seems to be all I can accomplish right now.

Our sons have been amazingly supportive in both holding me up and doing their own grieving.  Phyl built a robust and resilient network of family and friends that is a source of strength for us all.  Lots of people are bringing food and my brother Dan and family stop by often to make sure I’m eating.  Sleep is a bit elusive but getting better.  While the pain is beyond comprehension, I’m still walking through each day, one step at time, thanks to all of this support.  I hope you too are able to think about Phyl, talk about her with others, and cry.  I’m certainly doing a lot of all three.

I’ve read several books (actually I started but didn’t finish several books) on grieving the loss of a spouse and found them to be mostly crap.  They don’t tell you about the searing pain that feels like a knife entering my chest when I think about her.   They don’t tell you that everything you do again for the first time without her takes your breath away.  But I did find one book that I’m sharing with folks that seems mostly consistent with my own experience and feelings.  The title is “It’s Okay that You’re Not Okay” – and I’m a long way from being “okay”.   If you are curious and need some help grieving honestly yourself, you might want to listen to the introduction which I’ve linked below.  If you prefer denial and distraction (which are useful tools for dealing with unbearable pain) don’t listen to it.   The introduction chapter is about 9 minutes long. 

So, if you just listened to the audio recording, to finish her sentence, she said “here is what I most want you to know: this really is as bad as you think.”  You will need to get the book to learn more…. sorry. To continue…

Jake, Brian, Jeremy, and I are beginning to think about a memorial in the fall.  It is a bit tricky with COVID but we hope to build something around the Western Mass ALS Walk-a-Thon which has been moved from September 13 to Saturday, October 3, 2020.  We still hope to have it at Look Park in Northampton, but as of today, there are strict limitations on the number of people who can attend any event.  We’ll keep you posted but please don’t make travel plans as everything could change.

You are welcome to share your own thoughts in the “reply” box below.  For now, please join me in celebrating and grieving the life and spirit of the love of my life, my best friend, and the center of our family.  We knew this would be hard and miss her more than we ever could have imagined….

On day 15….

John

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.
Phyl loved to ride her bicycle long distances, read at the beach, tend her beautiful gardens, jog with her friends, hike mountains with John, and most of all she loved to get down on the floor to play with her grandchildren.  She lived for her family but also had many friends who loved her dearly from all stages of her life.  Phyl especially appreciated the support of friends who took her on many outings during her illness and joined her on her deck to talk, laugh and cry toward the end.
One of her friends wrote; “Phyl has fought a strong and courageous battle against each and every debilitating stage of ALS for nearly 5 years.  Last year she was the keynote speaker for the annual ALS Walkathon in Northampton, MA.  Phyl was never defined by the limitations of her challenges.  She lived each day to the full extent of her best ability.  Phyl loved her family and friends; and has taught us many life lessons through her daily acts of courage and resilience.”
Phyl will be missed terribly by her husband of 48 years, John Gerber, and their three sons and spouses, Jacob and Shannon, Brian and Belita, and Jeremy and Sam.  She is survived by her father, Milton Ebner and his spouse Florrie, brothers and wives, Stuart and Gretel, and Howard and Francine, her mother-in-law Peggy Gerber, and brothers-in-law and their spouses Dan and Jen, and Don and Roselle, and all of their children, and finally by her beloved grandchildren, Noah, Colin, Elena and Lucia.
Phyl’s family is planning a celebration of life sometime in the fall, associated with the ALS Walk-a-Thon in Look Park on Sunday, September 13.  They are requesting donations in lieu of flowers to the ALS Association Massachusetts Chapter.  Here is the link if you would like to donate:
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The obit appeared side by side with one of her closest friends on June 20….
obit
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After her passing……  a few more posts (about John):

June 28, 2020 – The first two weeks

July 4, 2020 – Navigating Transitions

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 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 on Sunday, September 13.  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 more posts about John:

June 28, 2020 – The first two weeks

July 4, 2020 – Navigating Transitions

 

 

Not much time left

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.

She is on all liquid nutrition through her belly port, which also allows us to administer meds.  We have a hospice nurse check on her twice a week and a hospice aide is coming in to give her a bed bath since she can’t sit up long enough in the shower chair for me to wash her without causing pain.  And of course, her respirator mask can not be taken off for more than 30 seconds at a time.  It is a miserable way to live.

As many of you know, I have been working for the past (almost) 5 years to help her live with this horrible disease.  We both feel grateful for this time as about 80% of the people who developed symptoms of ALS at the same time as Phyl have already passed.  During this time, I have searched for possible cures, gotten her involved in several experimental drug trials, acquired all of the adaptive equipment I could find to help her stay as active and comfortable as possible as she adjusted to her ever-increasing physical limitations.  We have traveled to Arizona, Costa Rica, Aruba, Florida, and rented beach houses in Rhode Island several times.  We have laughed and cried together, been frustrated and joyful together, and very often remarked about how lucky we have been to have such good friends and loving family.  And most of all we have so very often thought how proud we are of our three sons and the men they have become.  Phyl’s greatest pride and her legacy may be seen every day in how Jake, Brian and Jeremy interact in each other and within their own families.  One of her friends wrote in an email last week…

“Life is hard.  You just need to be so grateful that you have such a wonderful caring family.  You did that!  You should be so proud.”

I’ve read that quote to each of our sons and each time I teared up.  “You did that!” You did that Phyl.  You are the reason, our sons are the caring, thoughtful, and compassionate men that they are.  On Monday morning, Phyl was uncomfortable and agitated.  She had a really difficult night.  Her breathing was labored, and she had already had her third dose of morphine to try to control the air hunger.  I thought it was over and I texted Jake, Brian and Jeremy and asked them to come home.  I got almost the exact same text back from each of them within minutes saying “I’m on the road in about 5 minutes… be there soon.”  You did that Phyl….

I don’t want her to go….

But just as I have tried to help prepare her for each of her many loses, her legs, her arms and hands, and her ability to speak, I believe it is now time to help her prepare for next transition beyond this life.  Yes, I do believe in “life after death”.  I’m attracted to the term “devekut” from the Jewish mystical literature as the idea of “melting into the divine.”  I wrote about my thoughts on the afterlife, the melting into the divine,  in a recent blog post that you may have seen here: https://changingthestory.net/2020/05/26/the-afterlife/

John


Click here for the next email in Phyl’s story

Phyl is not doing well

TO;   Friends and family…..
My last note mentioned that we got hospice to come to the house and it seems that it was just in time.  I needed the help and Phyl needed the drugs!  The hospice nurse helped us treat her bed sores and the places where her mask straps were causing redness.  Hospice also took over ordering all the meds, saving me the hassle of keeping track and all the trips to the pharmacy.  The nurse visited 3 times the first week, 2 times the next and is now on a once a week plan.  I also text with her almost every day and get responses within minutes about care for Phyl.  This is working out….
But I’m writing now to tell you that Phyl is not doing well.  She has not been sleeping at night (but seems to be fine napping during the day).  Her communication ability has taken a down turn as those of you who have sent her messages surely noticed.  Her right hand has little movement any more and although she was getting better using the head mouse to direct a cursor on the iPad, at this point her neck is too weak to use it to type.  She is very frustrated.  She can use the head mouse to open messages but not respond.  This morning she asked me to read her texts and emails to her for the first time, as this was just easier.
Please do continue your texts and emails.  I will read them to her.  She can’t zoom or Facetime as it is too difficult.  If you want to visit, please feel free to contact Phyl but please also copy me so I can schedule.  I know the kids are thinking about a visit soon and you may get bumped for our grandchildren!  Sorry….
The bigger problem is with her breathing.  She has no lung capacity of her own.  We can’t take her respirator mask off for more than 30 seconds.  And for the first time, she experienced dyspnea (air hunger) with her respirator mask on.  Fortunately, hospice had provided me with liquid morphine which settles her quickly.  She had air hunger attacks about once a day last week but for the past few days they have been happening more often.
Morphine works quickly but makes her sleepy and coupled with the anti-anxiety drugs, she spends much of the day in a very unresponsive state.  Yesterday she was able to interact a bit with a group of friends and then with family for dinner but today she is lethargic and sleepy again.  Without the ability to communicate, it is a real guessing game to try to figure out what she needs; scratch an itch, reposition her legs or head, or rock her chair back etc.  So she is pretty uncomfortable much of the time.
Phyl wanted you to know why she has not responded to your emails and texts. She also wanted me to share the attached article about the experimental drug she has been on.  We really got lucky to get on the Amylxy trial because it is the first drug in 30 years to actually make a difference in the progress of the ALS symptoms and is far better than the one given previously.  The attached article (pdf file above)  is really about the two Brown University alumni that developed the drug but the “star” of the article is surely Phyl.  Be sure and read the first and last paragraph anyway!
Also, when it came out Phyl’s favorite doc at UMass Medical (who we have been seeing for several years) wrote the following to Phyl….
Such a great article!  We are all very proud to have been part of that study as I’m sure you two are as well.  When we all leave this earth, we’ll think about what we accomplished and the legacy we leave behind.   We’ll all have our children and grandchildren as part of our legacy and something to look back on with pride, but you two will have so much more as well.  Phyl was one of the very first people to join the study and has stuck with it for so long.  The amount of information you two have contributed to the study of this drug is phenomenal and will impact the lives of so many ALS patients and families.
That was nice…..
If anyone wants updates, please text me.  I’m also happy to chat on the phone but text ahead to make sure I’m free.
Love to all….
John
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Thoughts on life and the afterlife

I’m really not sure why anyone would be interested in my thoughts on the afterlife but it helps me to clarify my own thinking when I write.  So I did.  I’ve been thinking about death a lot as several close friends have died recently and the corona virus has surely put death in the news.  These sort of ponderings seem to happen to many people as they age.  I offer these ideas in a public forum in hopes that some readers might share their own thought/feelings about life and death (in the Comments box below). 

SO HERE GOES…

First, I’m not terribly fond of the word “afterlife” – even though I used it in the title.  Most people know what is meant by the term afterlife, so it is useful.  But the word “afterlife” feels too final as I have come to believe in the continuation of consciousness after the death of the physical body.  For me, the death experience appears to be more of a transition to another form of existence, a continuation – not an ending.  I need a better word to describe the “condition of being that follows once the spirit-self has left its bodily container.”  Perhaps you have a suggestion.

I surely don’t have a picture in mind of a heaven with “pearly white gates, hanging out with old friends playing harps in the clouds etc.”, I do understand why that description might be a useful story to tell children and I suspect it can be a comfort to those who believe.  But it’s just a bit too easy for me to accept what seems more like a fairy tale than a thoughtful depiction of the state of existence that continues following the demise of the body.  Nevertheless, I believe that we live forever, as suggested in Francis Hodgson Burnett’s classic book, The Secret Garden.

Continue reading Thoughts on life and the afterlife

A day in the life of Phyl (and John)

TO:  Friends and Family

Sound asleep… I feel, rather than hear a noise in the bed next to me as I awake abruptly to Phyl trying to get my attention.  I pop up quickly and see her from the light given off by her ventilator machine.   Phyl is pounding her chest…. the signal that she needs the cough machine.  Running down the hall to find the cough machine which is still in the living room from yesterday’s use, I’m confused.  She needs the cough machine so she is choking on her own saliva, but she has never woken up choking from sleep before.  A new first… in 4 years of firsts.  A new normal?

I must elevate her bed to a more upright position, remove her face mask from the ventilator, and hold the cough machine mask over her mouth and nose.  Pressing the button to activate the forced air, her cheeks blow out like a squirrel with a mouth full of nuts and her eyes open wide in a look of surprise.  Her chest heaves out as her lungs fill with air and then suddenly, the machine reverses and becomes a vacuum, drawing air out as she coughs to try to  clear her throat.  She nods and looks at me with expectation… do it again…. and once more I fill her lungs with air.

After a few of these violent breaths and coughs, there is a quick swallowing motion as she clears her throat of the remaining saliva, nods her head, and begins to relax.  She is breathing again in those short desperate, chest heaving motions that say it’s time to put her ventilator mask back on.  A smile of relief and her eyes get soft again.  The fear that surrounds us both whenever she cannot breathe is released.  Back to normal…..

That was this morning about 5:00 am…. a bit overly dramatic?  Perhaps.  Self-indulgent?  Yes, okay… maybe.  But at 6:00 am when I sat down at my laptop computer after breakfast to sip Earl Gray tea and start my day, I decided to share with you what “normal” is like in our household these days.  I’m not looking for sympathy… really.  I’m actually pretty grateful to be able to care for Phyl’s needs, whatever happens.   And she was never in any real danger.  If we did not have the cough machine at hand, she would have eventually cleared her throat of saliva… I’m pretty sure.   It’s all part of the new normal.

I can’t spend too much energy thinking about “what if” anyway.  My practice is to try to “live in the moment” or “one day at a time”.  Anything else is too difficult. So, at 6:00am today, Phyl is sleeping and breathing easily with help from her AVAP. That’s an Average Volume Assured Pressure unit that blows air into her lungs and pulls it back out again.  This portable ventilator keeps her breathing and she wears it all day and all night.  She can take it off for 15 to 20 minutes if she is sitting upright, allowing her to eat and get her hair washed.  But even this short time off the vent tires her diaphragm muscles so much that she is soon calling for “air now” with a weak voice and desperate look on her face.  The new normal.

I thought I’d tell you about a “normal” day in this email.  Yes, self-indulgent.  You can quit reading when you get bored.  This goes to a list of folks Phyl has chosen to share periodic updates.  Since there are no pictures this time it will just be an email message.  I think I need to do this for myself.  I need to get it out.  Lets see where it goes….

Most mornings begin in far less dramatic a fashion – with the whimpering of our dog, Riley.  If I don’t hear him, Phyl will bang on the bed near me with her left arm until I wake up, although this may not continue much longer as her left arm is getting much weaker and it is not easy to move.  While she is in her power chair, she has to ask me to position her left elbow on the armrest for her because she cannot lift it herself.  Her right hand which is used to type onto her iPad to send emails, comment on Facebook, and “speak” (if she types a sentence the voice in her iPad will say it out loud for her)… this right hand that allows her to be part of the world is getting weaker too.  She can no longer use it much after about 5:00pm as it gets tired.  This worries her a great deal.

Anyway, back to Riley.  He whimpers for his food each morning sometime around 6:00am.  I get up to feed him as he won’t quit if I don’t get up and this annoys Phyl – so Riley gets fed.  I’ll have my cereal too  and read the newspaper each morning at the dining room table.  The news is all bad.   How many people died yesterday?  More important for us, how many are being treated for COVID 19 at Cooley Dickinson Hospital in Northampton, and how many occupy ICU beds (the answer was 5 ICU beds are occupied this morning).  I assume if we need an ICU bed today it will be available.

It’s a hell of a way to start the day, but that’s the new normal.  Although I’m really not sure we want access to an ICU bed.  Phyl and I discussed what we will do if one of us gets sick.  If I need to go to the hospital, we are in trouble.  There is nobody to stay with Phyl because of the virus.    So, she will fake lack of breath (easy for her) at the same time as me and we’ll call 911 for an ambulance for both of us.  I know, it’s not much of a plan.

If she gets sick (which is more likely) then we have a decision.  We were on a video call with her support team at the Lahey Hospital ALS Clinic this week.  I asked her neurologist which does she think would be a better plan if Phyl got COVID 19, based on all that she knows about ALS.  Would it be better to be intubated (a tube down her throat into her lungs) and forced air ventilated in a hospital bed, breathing perhaps, but alone,… with nobody to help her get to the bathroom, or scratch her head, or reposition her left hand as needed?  Or would it be better to be at home on her current, less invasive ventilator and be cared for by someone who loves her more than life itself?  The neurologist could not answer.  I didn’t expect she would.  But when the news report says that 80% of the people intubated and vented in ICU beds in NY City have died, it seems to be an important question.  If aggressive hospital care results in a 20% survival rate in people with healthy lungs, what are the odds that someone with ALS will survive COVID 19?  And where would you want to die if that is the most likely outcome?  The poor neurologist didn’t answer.  I don’t think its overly dramatic to be asking these questions.  They keep me awake at night.  The new normal.

Phyl and I have not decided what to do really.  There is a strong pull to trust the medical people and the hospital care they provide.  But the thought of her being alone in an ICU bed haunts me.

Before COVID 19, I would not be counting ICU beds at our local hospital while reading the newspaper.  I would have my breakfast at the dining room table and read the latest gossip about the Red Sox.  I miss the Red Sox….

I often get an hour or so in the morning to do whatever I want before Phyl calls (she has a door bell she rings when she needs me) although it is getting more difficult for her to press the button on the door bell even with her good right hand.  When I tuck her in at night I put two door bells on the rolling cart next to her bed that holds her ventilator and remind her that all she has to do is knock one of the door bell buttons on the floor and I’ll hear it crash.  We both smile as this happens more often than not.

During “my time” in the morning, I sit in my office and often read something spiritual.  Lately I’m reading Tielhard de Chardin’s book, Hymn of the Universe.  I love his writing about the evolution of humankind as the emergence of a universal consciousness which he equates with a Christ (translated as that which was blessed by God) consciousness.  Long before Father Richard Rohr wrote about this in his more recent book, The Universal Christ, Tielhard de Chardin noted that Yeshua (Jesus) the man, was not the same as  the Christ consciousness which pre-dated the birth of Yeshua.  He contends that the “incarnation”, that is the divinization of the material world, has been happening since the beginning of the universe and continues today with the birth of every new baby (have you seen pictures of our new granddaughter Lucia – she would make you believe in the divine).  Anyway, the readings may be followed by a meditation or perhaps writing in my journal.  Today I’m typing this note to you…. waiting for the doorbell to ring.

When it rings, I jump up to see what Phyl needs.  Often it is just to remove some of her blankets.  Sometimes I need to take her left arm out from under the covers or move one of her feet to be more comfortable.  She lies in bed in the morning and watches the bird feeder outside our bedroom window.  And eventually she ring the bell and sticks her thumb out (her right hand of course) like she is hitch hiking and points to the bathroom.

The process of getting her out of bed is a bit awkward and I won’t describe it.  It’s not very graceful.  But once in her power chair, she has a bit of independence.  She drives herself to be  near the toilet, and I unhook her respirator tube from the mask, lift her onto the toilet, and reconnect her air tube.  She can still sit up on her own, but I have to lift her head off her chest, as her neck muscles are no longer strong enough to lift her head.  During our Clinic visit this week, they told me about a neck brace which I ordered on Amazon.  It should be here in a few days and will help hold her head up while on the toilet.  She is okay in the power chair because it tilts back enough for her head not to fall forward.  The new normal.

Next, we move into the kitchen for juice and suctioning.  As she can’t easily swallow any longer, saliva builds up in her mouth.  The choices are trying to swallow and perhaps choking, drooling down her chin, or suctioning. All three are part of normal for us.  But she prefers the suctioning.  She indicates with a motion of her right hand moving away from her mouth, which I recognize as “time to suction.”  The machine is kind of loud but is effective as a tube is put into her mouth and vacuums out the saliva.  We do this 10 to 15 times a day.  The good news is that she doesn’t need it at night!  Some folks with ALS need nighttime suctioning too.  We both are grateful to be able to sleep through the night most of the time but are aware that the new normal might include suctioning at night as well.

Back to the story of our day…. the next step is washing her face and chap stick for her lips and then I deliver her iPad so she can check to see what her friends (and especially our grandchildren) are up to.  Every morning she is greeted with messages from friends.  Sometimes it’s just a note saying that you are thinking of her.  About half the time she gets a video of Brian’s two girls, Elena and Lucia, since they have been up for several hours already.  A two-minute clip of Elena dancing around the house brightens up Phyl’s day immeasurably.  She lives for these messages, so please keep them coming (email, text, video… whatever works for you).  While she is “joining the world” online I make her breakfast and prepare her meds.

Damn… I’ve written three pages in MS Word and I’m only up to 9:00 am in the morning.  As I said, stop reading when you get bored.  Our lives are not really all that exciting.

Back to breakfast….  she loves bacon!  And for the past few days it has been matzah brie to mark Passover.   She will eat her meals in her power chair in the living room.  If it is something she can eat on her own (I have to feed her anything that requires a spoon or a fork as she can’t lift these to her mouth any longer) I’ll have another cup of tea while she eats, check into my class on my laptop (I’m only teaching one class this semester online so it’s pretty easy) and I watch her eat – in case she chokes.  She chokes on her food during about 50% of her meals.  There is really little I can do, but I will jump up and rest my hand on  shoulder to reassure her that I’m here while she tries to clear her throat.  She is not really in danger, but it is pretty scary nevertheless.  It may take 5 minutes of trying to cough, gaging, trying to breathe, cough, gag some more etc.  When it slows down a bit, she may pound her chest indicating that she wants the cough machine which does the final clear out of her throat.  Then a weak smile and a few more bites of food.

She is really not eating much but I try to make sure she has three meals a day.  I have a concentrated liquid “food” that I can put directly into her stomach with the feeding tube and a syringe.  I always feel better when I get a bit of Kates Farm Liquid Food into her once a day, but she prefers to try to eat real food.  She tells me that when she goes to bed at night, she dreams about eating a huge meal.  But a few bites of “real food” sometimes fills her up.  I know she is not eating enough but I’ve decided not to bug her about eating more.  She has enough problems.

So, our day goes on.  We have an aide that comes in three times a week to help with household chores in the morning.  She also stretches Phyl’s arms and legs, and massages her hands which are curled up into a claw.  She can no longer open her fingers, which makes typing difficult.  She uses the iPad pencil on the screen, but it is getting more difficult to hold.  I got her a head mouse which she is learning to use.  Movement of her head in any direction causes the mouse cursor on the screen to move.  I installed “dwell” software so if she holds the mouse over something on the screen it “clicks” for her.  She doesn’t like it but will need it soon as she loses use of her right hand and arm.  The new normal.

While her aide is here, I can go shopping, out for a short bike ride or perhaps work on my class.  I’m preparing my summer online classes now, which I’ve taught for quite a while so it’s pretty easy.  In the fall and spring semesters I have two classes each term and they are now fully online as I’m not going to campus any longer (well, nobody is thanks to COVID 19 but that has been my plan all along).  So, I’m getting my fall and spring classes ready now.  I love this creative part of teaching and yesterday I took two online workshops on how to do it better. I can’t be too far from Phyl in case she chokes so I sit on the couch in the living room and she is in her power chair.  If she needs me, she just signals.

Phyl often reads or listens to music in the afternoon.  If the weather is good, she will go out on the back deck to sit in the sun.  On nice days, we try to walk Riley around the block.  It is difficult for Phyl since when people meet us (at a distance of course) they want to greet Phyl and chat.  She is wearing her respirator mask and can’t respond, so I try to manage some small talk (I’m not very good at it) and interpret Phyl’s expressions as best I can.  It is awkward and I pray that nobody is out while we are walking the dog.  But Phyl’s eyes say that she is happy to see our neighbors while we go around.  She is a much better person than me… but you knew that.

Eventually she will have something light for lunch, soup or lately it has been matzoh with gefilte fish.  Perhaps more choking or maybe not… and the day goes on.  She is on her iPad most of the day communicating with friends and messing about on Facebook.  I have tried to provide some sort of shared activity, but it is hard.  We avoid television during the day.

Some afternoons a friend will stop by to sit on the deck, but this is rare as we are all social distancing and it’s a bit dangerous for Phyl.  We’ve had video meetings on the computer lately with both friends and doctors.  Last Saturday morning, Jeremy set up a video chat for us with his brother’s and their kids.  Phyl smiled through the whole thing!  She can’t participate much since the iPad talker takes time to type out a sentence and she is wearing her face mask, but she tries.

Most afternoons are for reading and napping.  She sleeps a lot during the day, as she is very tired most of the time.  This gives me a chance to work on my classes while watching her sleep.  I can’t go out and leave her alone as I did last summer so a neighbor comes by to walk Riley almost every day.  Lately, we have been going through our old photo albums selecting pictures of the two of us over the past 50 years.  There are a lot of pictures!  I take a picture of the old photograph she selects with my digital camera and load it into my computer.  I’m planning on putting them onto one of those revolving picture screens so we can look back over the years.  We talk about all of the events of our life together and how joyful it has been most of the time.  Yes, some ups (thanks to her and our kids) and downs (my fault for sure) but mostly 50 years of joy.  The highlights are the kids and grandchildren of course.  We both often note how lucky we have been.

Looking back over the years has given me some perspective.  Yes, it is true that we are struggling right now (Phyl much more than me of course).  She is frustrated that she can’t do anything useful around the house and she misses our grandchildren terribly.  She feels isolated, scared and frankly cheated.  For the past few years, there was always the hope of some miracle cure for ALS but nothing that is in the works now is designed to restore motor neurons.  The treatments in research are all about slowing down the progress of the disease not restoring capacity.  Phyl doesn’t admit (maybe she does but she won’t say it) that there is little hope that she will improve.  I suppose there is a possibility but not likely.

We both know how this ends but we are not talking about it much.  The big question is do we try to extend her life as long as possible with a tracheostomy and a permanent ventilator.  This may not even be a possibility if she gets sick from the virus.  So  I’ve been thinking about death a lot lately.  Even before COVID 19, I had 3 friends die this year who were my age and quite a few acquaintances pass on.  So, it is on my mind.

I’m not personally afraid of death, as I know it is both an end of something and a beginning of something new.  Consciousness continues even as the physical body is no longer functional and I’m kind of curious about what’s next.  But Phyl has always been afraid of the great unknown that is beyond this life.  We talk about it sometimes, but it is difficult for her to talk about.  I think it is possible to prepare for a good death.  I’ve read a lot about this lately and feel that I can accept whatever comes along for me… but who knows?  Maybe I’m kidding myself.  In any case, I need to stay healthy for now to take care of Phyl!

And before we know it, it is 5:30pm and we can watch the BBC followed by PBS news (all bad).  I make her dinner while she watches the news.  We are still getting two meal deliveries a week from her friends!  She eats first so I can feed her and then I eat.  This is followed by a few hours of some Netflix or Amazon Prime TV series.  Lately she’s enjoying Death in Paradise, a series about a stuffy British detective on a tropical island in the Caribbean.  We both like the scenery but I often take this time to work on my classes.  I can mostly fit my class work around her schedule.   We’ve been finishing the day with the old 1970’s series, All Creatures Great and Small, about a British veterinarian in a rural practice in the midlands region of England.  It is simple and sweet.  Just the kind of show to watch before bed!

Our days are quiet and pretty boring (for Phyl).  I’m fully occupied (unlike many people today) with my online teaching, being a full-time caregiver, keeping the house running, and taking care of my Mother’s finances (thank goodness my brothers do most of the work taking care of Mom). I am pretty much non-stop as soon as that first door bell rings!  It’s more difficult for Phyl as she doesn’t know what to do with herself during the day.  One day is much like the last….and (hopefully) the next – as we really don’t want any excitement.  We are ready for bed about 9:30 pm.  I make up her nighttime medications while she watches Rachel Madow.

Preparation for bed is another juggling act (not very graceful again).  I’m not very good at brushing her teeth or getting her into her pajamas, but eventually I’ll lift her into bed and get her legs and arms in a comfortable position for the night.  She can’t move so this takes a while to get right.  We use an adjustable bed and three different wedges and memory foam pillows to make her comfortable.  There are generally several adjustments before she falls asleep, so I am up and down a bit until she settles.  I’ll read for a while and then fall a sleep.  It isn’t a sound sleep much of the time  as I’m looking up to check on her regularly.  Oh well….

So, we are back to the beginning – morning again.  We are living 24 hours at a time, so I guess that’s the end of my story for today.  It is a long one…..  if you made it this far, thanks.

And please do keep texting, emailing and communicating in whatever way possible with Phyl.  She needs you more than ever…..

Love and peace….

John


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