I live in a food prison.. It’s all by design just like prisons are by designed. I just got tired of being an inmate. So I figured, let me change this paradigm, let me grown my own food. This is one thing I can do to escape this predestined life that I have unwillingly subscribed to. – Ron Finley
The most effective change-makers in our society aren’t waiting around for a new president to make their lives better, they’re planting seeds, quite literally, and through the revolutionary act of gardening, they’re rebuilding their communities while growing their own independence.
Elena is entertaining her Mom and her two Grandmothers with Jake and Brian in the background
Hello family and friends…. John again – reporting “from the beach.” We are spending two weeks in southern Rhode Island (we head home tomorrow) with family coming and going and most important spending time with our grandchildren! We are a few miles from East Matunuck beach, which is a state beach (cheap parking for us old people) and beach wheelchairs available which can be pushed on the sand, making the beach access possible for Phyl. Transfers from the power wheelchair to the beach chair take a bit of maneuvering (I haven’t dropped her yet) and then we push her down to the water and drop her into a chair in the sand where she can feel the sand on her toes and watch our grandchildren play. We’ve had at least one of my sons around most days to do the heavy lifting but I can do it if we are alone.
Jake digging holes with Elena, Noah and Colin
She loves the beach, even though it has been frustrating, since she can’t actively play with the kids. Her arms are too weak to dig holes in the sand this year and she is stuck sitting in her chair. Watching Noah on a boogy board both delighted and frustrated her as she always loved playing in the waves herself. Still, she can interact with the kids verbally (she has a microphone and amplifier to project her voice which is weak at times) and the kids often try to include her in their games. This is the third time we’ve rented a house in southern Rhode Island since Phyl was diagnosed and she notices the things she could do the last time and that she can’t do any longer. Last year she was walking slowly with a walker or hiking sticks but there is no more strength in her legs. She has an amazingly bright attitude and huge smiles especially when around Elena, Noah and Colin but then she may fall apart in tears when we are alone. It is heart breaking and wonderful all at the same time.
The beach wheel chair (in the background) made it possible to get Phyl’s feet in the sand
The house we rented has worked out – mostly. The ramps to get in and out are good but the bathroom is too narrow for us to get her to the toilet. We bought a bedside commode which works well and there is an outdoor shower that I’m able to get her in and out without too much trouble. As always, we make things work. Phyl has been accepting about all the accommodations and adjustments we have to make to get her from place to place but it is getting more difficult.
One night, we went to Providence with Jeremy, Sam, Belita, Brian and Elena to watch a Capoeira performance (a Brazilian martial art that Belita does – when she is not pregnant) and then Waterfire (a monthly event in which they light fires in the river). Lots of people, music, and celebration. We were having fun…. and then it rained – hard! Sam and Jeremy got Phyl to the pick-up spot in her power chair while I tried to get back to them with the van in a huge traffic jam. A kindhearted lady gave Phyl an umbrella, right out of the blue. It was a mess…. and we all got wet. But Phyl thought it was an adventure, even though she got soaked!
Sam, Phyl and Jeremy got wet in Providence!
One evening we were on the beach for dinner (Food Truck Night in Narragansett) with Belita, Brian, Jake and the kids. Brian and Jake got Phyl down to the beach in a full body sling since there was no beach chair and I got her some amazing blackened fish tacos from one of the trucks. The clam chowder was great although Elean ate most of mine!
Elena thought Pop’s clam chowda was pretty good!
It was a nice night until Jake spotted the lightning. Brian and Jake threw Phyl in the sling and hauled her back to the power chair. We just got her into the van just in time, but I think Brian and Jake got wet. Phyl and the kids thought it was all great fun!
Dan and Jen visited with our neice Corey
Last night Phyl took our sister-in-law Jen, our niece Corey, and our grandson Noah to a local summer theater to see Saturday Night Fever (nope, John Travolta was not playing Tony but it was a great performance). I took them to the theater in the van and helped Phyl navigate the accessibility ramp at the theater and get her into seat. Jen and Corey somehow got her out of the crowded theater after the show (without dropping her). They all had a blast, especially 7-year old Noah. When they got back, Jake, Brian, my brother Dan and I had prepared a lobster and sweet corn dinner for us all. Life on the seashore – Phyl loves lobster! I have to get the lobster meat out of the shell for her as she has little strength in her hands. Yet another small thing that she misses, but the lobster was wonderful.
Wasn’t easy but Brian and Jake got Phyl into the water!
Most days are less eventful. Before Jake, Noah and Colin arrived to spend a week with us (Shannon had to work) we were alone. We would have breakfast on our deck, plan our day together, often meditate, go to the beach to read (or meet up with Belita and Elena if Brian had to work), come home for dinner and hang out with a movie or reading at night. Some days would include a short trip to a farm stand or fish market. This is pretty much the same schedule we kept in Costa Rica and Aruba where we spent our last two vacations. After 46 years of marriage, we are happy just being together, reading and sitting on the beach but having the kids around was really special.
Noah and Elena playing catch with their GG in our back yard
I loved getting up early (to work on my online classes) while Phyl slept. I would be greeted by Noah and Colin who always arrived early to have breakfast with me. Phyl would get up and have breakfast in her chair out on our deck and we’d plan our day. Yesterday we had a big gang on the beach with Dan, Jen, Corey, Brian, Belita, Elena, Jake, Noah, Colin and Belita’s parents who were visiting from Colorado. Phyl is in her glory surrounded by family. The best part of the vacation was having our grandchildren so nearby! Phyl always has a huge grin on her face when the kids are around.
Today we are headed to the beach one last time before Jake and the kids need to leave. We’ll pack up tomorrow and head back to our regular lives. My classes start soon. I’ll be teaching one class on Tuesday and Thursday afternoons on campus. Phyl has organized for friends to be with her at those times. My other work is all online, so I can do it from home. I mentioned previously that I’ll retire in May so I can be home full time. I suspect there will be a post-retirement appointment organized for me so I can teach a few classes online but it will all be from home. We have a caregiver come in three mornings a week now and our Long Term Health Care Insurance will pay for more if we need it. Phyl will stay busy because she has an amazing group of friends who take her places in the van.
We removed the front passenger seat from the van so Phyl can roll her power chair right in place and sit next to the driver. She is pretty independent in her chair as long as there are no curbs or steps. The power wheelchair is not as “zippy” as her mobility scooter, but the chair is more comfortable and can be put in many positions to rest her back and bring her legs up. She spends most of the day in her power chair (thank God for Medicare as the damn thing was really expensive)! And while she is on a respirator all night, her breathing is still good enough that she can get through the day without it.
We don’t like to think to much about the future, so we’ll keep living one day at a time. We know that no one can predict the future. The prognosis for anyone living with ALS is not good, but we know that a prognosis is not a prediction. Everyone who has this disease experiences something different. Most have a much more rapid progression. A few are slower. But it is always steadily toward less and less ability to control your muscles and we have certainly experienced the constant loss of ability. At the same time, we have gained much from of a community of friends and of course family who show up and share their love and help. We both feel blessed and know that many people with ALS are not as fortunate as we are…
Context: 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→
This week, the United Nation’s Intergovernmental Panel on Climate Change (IPCC) released a long-awaited report on land, climate change and agriculture.* The report’s findings confirm that the agriculture and food systems on which we now depend are no longer viable.
Individual consumer choices in the global north, about what to eat, won’t be enough to get rid of a bad system, nor will they be enough to build a just transition to a better one.
While much of the media coverage of the new IPCC report on land and agriculture focus on diet, the report needs to be understood as saying this: we (in protein-rich countries, at the very least),must replace our current large-scale industrialized systems of agriculture and food production with those based on agroecological and regenerative practices. Food Continue reading Climate Change Report calls for a New Agricultural System→
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.
Non-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→
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.
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
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.
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.
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!
The stories we tell about the creation of the Earth and the origins of humankind show us how our culture views the world, our place in it, and our relationships with the other living things which inhabit it.
To change the world, we… need first to change ourselves – and then we need to change the stories we tell about who we are. The stories we’ve been living by for the past few centuries – the stories of male superiority, of progress and growth and domination – don’t serve women and they certainly don’t serve the planet. Stories matter, you see.
They’re not just entertainment – stories matter because humans are narrative creatures. It’s not simply that we like to tell stories, and to listen to them: it’s that narrative is hard – wired into us. It’s a function of our biology, and the way our brains have evolved over time. We make sense of the world and fashion our identities through the sharing and passing on of stories. And so the stories that we tell ourselves about the world and our place in it, and the stories that are told to us by others about the world and our place in it, shape not just our own lives, but the world around us.
Context: 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).
Non-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.
Changing the Story 