Category Archives: Spirituality and Wholeness

When someone is grieving….

I wish I had written this myself…..

John Gerber


The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” ~Henri Nouwen

It’s hard to stand at the edge of someone else’s grief.

There’s the awkwardness. You always feel a little like an uninvited guest who arrived late and missed the first half of the conversation—a conversation that turns out to be a wrestle between another person and the deepest parts of their own soul.

What can you say when you realize you’ve barged in on an interaction so intimate, so personal that you just want to avert your eyes and slink quietly away?

Then there are the triggers. Continue reading When someone is grieving….

Why I bother with God….

In a recent episode of the TV series The Crown, Queen Elizabeth’s husband Prince Phillip, had a brief conversation with his mother Princess Alice of Battenberg, who asked him casually “so how is your faith?”  After a slight hesitation he replied, “dormant.”   The aging Princess told her middle aged son bluntly….  “That’s not good, let this be a mothers gift to her child … find yourself faith, it helps, no… not just helps … its everything.”

It is easy to imagine why the husband of the Queen of England might find himself too busy to worry about his faith… too busy to “bother with God.”  After all, there are all those royal ceremonies to attend!  But what about you and me?  Why and when did we let a sense of the divine, the spiritual or the sacred slip out of our lives?  Or maybe we are hard core materialists (if you can’t see it, then it doesn’t exist) and have never had any sense of the spiritual in the first place?  If so, you would not be all that unusual in the secular world in which we live today.  Most of us today don’t “bother with God.”

Continue reading Why I bother with God….

Beyond a Job: Doing The Great Work

Adapted from an Interview with Matthew Fox by Mary NurrieStearns

Much of our life is spent in the world of work. Our time, energy, and even identity are wrapped up in what we do and how much money we have. Therefore it is important to explore how work is associated with prosperity. At times, work is a job an exchange of effort for money. But work can also be vocation. When work is vocation, it is where we express our unique talents, find meaning, and contribute to what Matthew Fox calls “the great work,” the work of the universe.

To discuss this subject with Matthew Fox was like finding a gold mine. The author of many books, Fox describes in “The Reinvention of Work” a new vision of livelihood. In his envisioned world of work intellect, heart, and health come together to celebrate the whole person. He is a true teacher of what he espouses. He was dismissed by the Continue reading Beyond a Job: Doing The Great Work

Want to be a plant scientist? Look at a leaf…

FROM: Lab Girl (pp. 3-4) by Hope Jahren. Knopf Doubleday Publishing

labgirl
“People are like plants… they grow toward the light”

PEOPLE LOVE THE OCEAN. People are always asking me why I don’t study the ocean, because, after all, I live in Hawaii. I tell them that it’s because the ocean is a lonely, empty place. There is six hundred times more life on land than there is in the ocean, and this fact mostly comes down to plants. The average ocean plant is one cell that lives for about twenty days. The average land plant is a two-ton tree that lives for more than one hundred years. The mass ratio of plants to animals in the ocean is close to four, while the ratio on land is closer to a thousand. Plant numbers are staggering: there are eighty billion trees just within the protected forests of the western United States. The ratio of trees to people in America is well over two hundred. As a rule, people live among plants but they don’t really see them. Since I’ve discovered these numbers, I can see little else.

So humor me for a minute, and look out your window. Continue reading Want to be a plant scientist? Look at a leaf…

A Caregiver Perspective

caregiverContext:  my wife, Phyl Gerber, was diagnosed with Lou Gehrig’s Disease on March 15, 2017.  I was her primary caregiver while she experienced loss after loss until she died on June 15, 2020.  The ALS community has shorthand for a person who is a caregiver for someone living with ALS.  We are called CALS (caregiver for ALS) and the person with the disease is a PALS (person with ALS).

I was moved by an essay written by someone who served as a CALS for more than 10 years until her PALS passed.  She wrote on our Facebook Group… “I found myself over the years of caring for my PALS thinking of the phrase, ‘the two shall become one’ and sadly smiling.”  Her essay inspired me to share my own experience as a CALS for Phyl over 3-4 years on the same Facebook group which is exclusively for caregivers for people with ALS.  It was written without naming Phyl because the group members don’t know her…  so she is referred to as “my PALS”.

John M. Gerber

August 2019 (updated April 2021)


When first diagnosed, my PALS suffered anxiety, fear, a sense of loss, a feeling of being cheated out of a “normal” aging process, and deep, deep sadness.  As a CALS, Continue reading A Caregiver Perspective

A Friend in Deed…

pooh

It occurred to Pooh and Piglet that they hadn’t heard from Eeyore for several days, so they put on their hats and coats and trotted across the Hundred Acre Wood to Eeyore’s house. Inside the house was Eeyore.

“Hello Eeyore,” said Pooh.

“Hello Pooh. Hello Piglet” said Eeyore, in a Glum sounding voice.

“We just thought we’d check on you,” said Piglet, “because we hadn’t heard from you, and so we wanted to know if you were okay.”

Eeyore was silent for a moment. “Am I okay?” he asked, eventually. “Well, I don’t know, to be honest. Are any of us really okay? That’s what I ask myself. All I can tell you, Pooh and Piglet, is that right now I feel really rather Sad, and Alone, and Not Much Fun To Be Around At All.

Which is why I haven’t bothered you. Because you wouldn’t want to waste your time hanging out with someone who is Sad, and Alone, and Not Much Fun To Be Around At All, would you now.”

Pooh looked and Piglet, and Piglet looked at Pooh, and they both sat down, one on either side of Eeyore in his stick house.

Eeyore looked at them in surprise. “What are you doing?”

“We’re sitting here with you,” said Pooh, “because we are your friends. And true friends don’t care if someone is feeling Sad, or Alone, or Not Much Fun To Be Around At All. True friends are there for you anyway. And so here we are.”

“Oh,” said Eeyore. “Oh.” And the three of them sat there in silence, and while Pooh and Piglet said nothing at all; somehow, almost imperceptibly, Eeyore started to feel a very tiny little bit better.

Because Pooh and Piglet were There.

No more; no less.


Author – AA Milne

Illustration – EH Shepard

Non-duality and Cosmic/Christ/Unity Consciousness

QA_nonduality

 Ilia Delio

Ilia DelioNon-duality is the belief that entities do not exist in opposition to one another or separate from one another.  Non-dualism is another name for unity.  The concept of non-duality is ancient and arose with Eastern religions such as Buddhism and Hinduism and the primacy of pure consciousness. Quantum physics has opened up a new interest in non-duality in so far as consciousness plays an active role in measurement and thus in the description of reality.  The physicist David Bohm developed a theory of implicate order based on quantum physics to describe a wholeness in nature. He once said that if our eyes had no lenses, the entire universe would appear as a hologram. Even on the level of biology, we are beginning to realize that wholeness and non-duality comprise nature. Harold Bloom in his book The Global Brain describes the network of life on Earth as one that is a global brain in which each of us plays a sometimes conscious role.    Arthur Koestler proposed the word holon to describe the hybrid nature of sub-wholes and parts within in vivo systems. A holon is something that is simultaneously a whole and part.[i] From this perspective, holons exist simultaneously Continue reading Non-duality and Cosmic/Christ/Unity Consciousness

A Socratic Dialogue on Dying…


FROM Phaedo in Plato’s Dialogues

Just hours before Socrates drank the poison that resulted in his death, his friend Crito asked him;

 “…in what way would you have us bury you?

Socrates replied;

“…be of good cheer… my dear Crito;

and say that you are burying my body only,

and do with that as is usual, 

and as you think best.”  


Socrates was able to consume the hemlock that killed him in a calm and peaceful manner, while urging his students and friends to “be of good cheer”.  Socrates was ready for death to take his physical body and indeed he was an active participant in his own passing.  Most of us are not quite so well prepared.

This past year has been one in which several people I know well have died.  I’ve been Continue reading A Socratic Dialogue on Dying…

The Continuing Saga…

I’m posting this update on Phyl (and me too) to my blog page because I have a feeling it is going to be a long one and it will be easier to read this way.  This also lets me include a few photos.  Only those folks with the password will be able to see this post.

John


smile
For our 46th wedding anniversary, I gave her a Yellow Submarine (because she didn’t have one)!

It is the end of July and we are doing pretty well in spite of the challenges – and perhaps because of the blessings associated with ALS.  Yes… there are blessings.  The last time I wrote it was shortly after the Walk-a-thon fundraiser, where Phyl was the second highest fundraiser for the second year in a row (the top guy “went corporate” and got big donations – Phyl only went to family and friends)!  She felt pretty good about this!  Thanks to everyone who donated and/or walked with us!

Since then we have kept things pretty simple and established a daily routine of care, broken up by a few wonderful weekends with family visits.  To give you a sense of what its like at 123 Harlow Dr. here is an outline of a typical day.

I get up early and get my own breakfast, read the newspaper (mostly about the Red Sox), check in on my online classes (it helps pay the bills), and then sometime around 9:00am I hear a bell calling me (Phyl has a button she presses) and our day together begins.

We start with a bathroom visit, which is no longer easy as it requires a transfer to her power wheelchair and back again.  Some days there is a shower and thank goodness she can roll in using a specially designed shower chair.  She gets “stretched” on the bed to keep her muscles from tightening up.  I help her get dressed and we fight over what she will have for breakfast.  She has never been a big breakfast eater, but if we don’t get enough food in her she will continue to lose weight (this is a real problem as it makes the muscles she has working even weaker).  She will often have breakfast on our deck and read the paper… and then the fun begins.

Almost every day Phyl has some activity planned with friends.  They may go shopping, to the movies, or take her power wheelchair on an accessible nature walk.  Her friends may also be recruited to do some gardening (under Phyl’s direction, they will weed and water… and sometimes plant new flowers).  Phyl loves her gardens and they look great thanks to the gardening volunteers.  If she is not going out to lunch with a friend, we fight over lunch!  We’ve gone to a liquid meal substitute lately which can be fed through her feeding tube directly into her stomach.  Since she is rarely hungry in the middle of the day, this helps to get her calories and protein.  She had her feeding tube (which dangled for 14 inches hanging out of her stomach) replaced with a small button which is low-profile and much less of an aggravation.  It requires a bit of special care to keep clean but is worth it.  This lets me give her medications and extra nutrition.

cart
She is examining her backyard gardens up close from her golf cart!

On days when there is nothing special planned, we will often sit on the back deck and read together.  She and a friend might take Riley for a walk, either around the neighborhood in her power chair or in her golf cart in the fields near our house.  I will work on dinner and either serve her on the deck or perhaps in front of the TV if the Red Sox game is on.  She says I”m getting to be a good cook.  I’m learning but don’t feel very accomplished yet!  I am kind of enjoying the planning, shopping and cooking dinner since I”m not really working much now.  In the Fall when I go back to work, the Meal Train organized by friends kicks in again and her network of friends will be delivering dinner two nights a week.  This really helps!

The evenings are generally the Red Sox and a mini-series.  Lately we have been watching McLeod’s Daughters which is about a cattle ranch in Australia run by a bunch of women.  The good news is there were 8 seasons with 30+ episodes each.  The bad news is that we are on Season 8.  It keeps us occupied.  Getting Phyl ready for bed is a complicated set of tasks that takes a while between the meds, bathroom dance, etc.  She sleeps well all night with a respirator helping her to breathe evenly.   It took us a while to work out the right respirator mask but we are doing well with it now.


I knew this would be a longish post…..


I asked Phyl this morning what she wanted me to tell you.  The first thing that came to mind (because it is fresh in her mind) is that she has accepted being in the power wheelchair almost all day.  In the past, we could transfer her from her mobility scooter (which she loved and had more of a motorcycle feel than a handicap chair feel) to a chair at the table to eat, the couch, and to the van.  She is having difficulty holding herself up in a seated position and her legs are weak now so the power chair is getting a lot of use.  Once I get her into the wheelchair she can zip around the house, go out on the deck, or around the block with friends.  We recently got it set up so she can drive her chair right into the van and it locks in place while we travel.  This is both upsetting, because it is yet one more example of the progressive nature of the disease, as well as satisfying because she can go places and still be comfortable in her chair.  Everything we do seems to have both a challenge and a blessing.

Of course the disease continues to take things from her.  Each week there is something new that she notices she can’t do that she could do in the recent past.  So we adjust and accommodate.  The feelings are mixed between sadness for what she has lost and gratitude for what we are able to do.  Many people with ALS do not have the resources to do the things we can.  Not all caregivers have as much flexibility in their work as I do with summers off.  So we have a lot to be grateful for.

Speaking of work…. I told my department that I would retire next May.  I need to be home and available for Phyl even though we also have aides coming into the house to help out.  I’ll teach one class on campus in the fall and maybe one in the spring.  Phyl has organized her friends to be with her while I’m teaching on Tuesday and Thursday afternoons.  If you are local and want to sign up, check out Lotsa Helping Hands: https://my.lotsahelpinghands.com/community/phyls-helpers/home

As I said, this disease comes with challenges and blessings.  The greatest blessing for Phyl has been the incredible network of friends who have shown up.  Some garden, others go for lunch, and some just stop by to say hello on a regular basis.  Folks who are not local call regularly to check in and chat.  I told her recently that if we had to rely on my network of friends… we’d starve.  She on the other hand has friends from high school, college, our Illinois days, and of course locally that continue to amaze us with their generosity (of time) and their love.


I’ve really got to end this soon….


Yesterday, my Facebook page popped up this picture from a bicycle trip we took in Colorado, 6 years ago.

Colorado

We were really proud of ourselves that day!  It was an optional part of a 5 day bike trip in the mountains in which we biked over a pass that most of the other folks decided to skip.  Biking at 9000 feet was not easy but we were in great shape!  We trained for this trip to celebrate our 40th wedding anniversary.  Phyl was always up for a physical challenge (and I always struggled to keep up with her).

Today is no different.  She now struggles with a physical challenge of a different sort.  I am amazed each day how she gets up and pushes herself through the day.  Sometimes the effort results in complete exhaustion.  I can always tell because she gets really “heavy” on these days as I help transfer her from the chair to the toilet or bed.  In the morning, her legs have some ability to help but by the end of the day, there is nothing left.  And I won’t lie to you… sometimes there are tears.  But the truth is that there are more smiles than tears.

We have no idea what the future will bring.  She is on three experimental drugs and we will continue to have hope that a stem cell treatment will be approved that might stop the progression before her breathing becomes critical.  But we know that ALS is a terminal disease.  I feel fortunate that the progression has been slow.  I’m told that 70% of the people diagnosed with this disease about the same time as Phyl have died.  Perhaps the experimental drugs are making a difference.  We just don’t know.

For now, we try to live one day at a time.  And most days are pretty damn good – hard but good.  And the best days are surely when Phyl gets to be with our grandchildren (three in the picture below and another due in November)!  We are blessed to have all three sons and their families in New England.  They visit us as often as they can, since it is not easy for us to travel.  In fact, we hope to see them all in a few weeks as we have a house rented in Rhode Island near the beach again.  The public beaches have these cool beach wheel chairs that can go right into the water and she will have our strong sons to help her get in and out!

I hope this paints a picture of what’s going on at 123 Harlow Dr.  I know it isn’t easy to hear this stuff – but Phyl wants you to know – both the good and the bad.  As always, she won’t look at my post to you but she knows I sent it.  Please do continue to call and visit.  She is willing to answer any questions about her condition so please don’t be afraid to ask.  It actually helps her to talk about it but remember that some days she has difficulty talking due to lack of breath, so if you sense she is struggling please ask if she wants to continue.   But do call as she needs to hear from you!

We laugh about this often…. our plan is to “just keep swimmingwink

grandkids