Soul wounds

 

A friend of mine recently lost her elderly father after several years of ill health and a battle with dementia. She wrote a beautiful tribute to him, praising him for his unconditional love, his development of her morals and empathy for others, and for always making her feel like she was a princess who was precious to him. It was a touching and eloquent homage, and when I finished reading it I thought, “How beautiful.” Then I thought, “I wonder what that feels like”.

The list of culturally acceptable parental behaviors has evolved a great deal since we baby boomers were raised.  What once was thought of as parental choice and no one else’s business could now result in serious jail time. My friend Brenda once told me “My father said if I got pregnant while I was in high school, he’d kill me, and I believed him.” Neither of us laughed.

This I have learned: the full consequences of childhood trauma may take years or decades to manifest. The delay itself is a consequence of the old family dynamic: one that taught the child that a simple expression one’s true thoughts or feelings could result in harsh punishment.  Children raised in this dynamic have no experience at honestly expressing what they need and want, nor do they believe that they are worthy of having their true needs met. Even a brilliant child can be so emotionally crippled that the remainder of their life becomes a daily struggle to set aside the heavy load of their past. 

The question of perspective is often raised. It has been said that if you have two children, you’ll get two different views of the family dynamic, if you have three you’ll get three views, et cetera. I have a friend whose children have all now reached middle age. During a family gathering, each of his children shared memories of their childhood interactions with their parents. What resulted were wildly, almost comically, divergent views of their upbringing. Acceptance of differing viewpoints is important, but it doesn't invalidate each individual's perceptions, nor should these be dismissed. A man I know who is a grandfather several times over likes to shrug his shoulders and say “Every family has problems” whenever someone brings up any type of childhood trauma. I agree, just as I agree that a rowboat tipping over in a shallow pond and the sinking of the Titanic are both shipwrecks.

The house that I was raised in is still there, a burned, empty shell with no roof, in a lower-middle-class neighborhood in a small town. Recently, I ran into a friend from high school who still lives nearby. “It’s such a shame what happened to your house after you all moved out, he said, “and it’s been standing there like that for years.” Yes, I said, it seems like none of us have felt like moving back and reliving the old memories. At least not some of them.

Every parent is surely a mixed bag, but parents need to remember that doing some things right doesn’t cancel out the other things they do to their kids. It all counts, and lifetime memories are always being created. Sweden banned all forms of corporal punishment for children in 1979. Here in the United States, parents can still teach their children that it’s acceptable to solve problems with threats, bullying, and violence. Then we wonder why we’re always at war.

The Three Kates

 

The Three Kates

9/7/23

 

In our old neighborhood lived the three Kates. They laughed at the coincidence of their names and became good friends. All retired, they went out to lunch often and went to one another’s homes and had cocktails. It went on this way for many years.

Kate-1 and Kate-2 were widows. I knew them when their husbands were alive, and I attended the funerals. They gave each other emotional support, and they both remained in the expansive homes they had purchased with their husbands many years previously. It always struck me that they wanted to hang on to those very large houses, but they each had enjoyed many years of happy memories in their homes. As for the third Kate, Kate-3 had been in her home even longer. It was a beautiful and unique home that she and her husband Bill had purchased when the neighborhood was just established. They had extensively remodeled it over the years, and they remained very happy there. All lived within two blocks of each other in the same small neighborhood. Kate-1 could see Kate-3’s house from her front yard. Kate-2 lived one street over.

Kate-1’s husband had died first. Greg suffered a long and tragic death from a progressive neurological problem. As a result of this experience and earlier experiences with medical treatment, Kate-1 had a morbid fear of any type of medical intervention, especially anything that included needles. She had no medical provider and never got checkups. She was a committed nonparticipant with any type of preventive healthcare whatsoever.

Kate-2’s husband died a few years later, after suffering a massive stroke while the family was at their vacation home on one of the many pretty rivers in north Florida. Guy lived only a few days after the stroke.  I remember going to his funeral and hearing a family friend play guitar and sing “I’ll Fly Away”. I’d never heard of their friend before the funeral, but it was clear from the performance that he was a professional musician. I went home and looked him up. He was a recording artist who had played with a band and recorded albums in the country music genre. He had been good friends with Kate-2 and Guy for many years.

We lived in our house in that neighborhood for 15 years, seeing the Kates and other neighbors at somewhat regular intervals at community events and homeowners’ meetings. Finally, we decided to downsize and move closer to the downtown area. A few months after the move, we held an open house at our new home and the three Kates came together to the party. By then, Kate-2 was experiencing more complications from her longstanding problems with rheumatoid arthritis . She got around with the help of a scooter and her friends. Kate-1 became her staunch supporter and protector and helped Kate-2 be much more active than she would have been had she not had her friend there to help and encourage her.

Finally, about six months ago, Kate-2’s mobility and manual dexterity had been so severely impacted by arthritis that she had to give up her house and seek an assisted living facility for help with her basic needs. Once again, Kate-1 was there to help in locating a suitable place, helping Kate-2 move a few favorite pieces of furniture, and making arrangements right down to hanging pictures on the walls. Kate-1 then visited Kate-2 several times a week, just as in the past, but after a 20-minute trip instead of a two minute trip.

 Sadly, the new arrangement for the friends did not last long. In June of this year, Kate-1 developed pneumonia. Due to her fear of anything related to medical care, she stayed home in her big house and put off going in for an evaluation when she became short of breath. As a result, her condition became grave and she required intensive care and ventilatory support. After several weeks in the hospital, she was finally discharged to a long-term care facility for pulmonary rehabilitation.  She did pretty well and finally went home, but she went downhill again soon afterward and was readmitted to the hospital in early August.

During this time, I visited Kate-2 a few times at her assisted living facility. It was a nice place. She was in good spirits, but worried about her friend, Kate-1. Aside from Kate-1, Kate-2 had only a few friends left, including Kate-3 and husband, who called and came by less frequently. Early in August, when I took lunch to the ALF, we talked about the possibilities. “I don’t think she’s going to make it”, said Kate-2 about Kate-1. She had a bad feeling about her friend. Kate-2 was a retired nurse and she knew that the signs weren’t good. Kate-2 was frustrated because her arthritis and immobility prevented her from visiting Kate-1 or helping her in any way. She told me that she was sad when she thought about how her life was turning out.

A couple of weeks later, I went back to the ALF, taking my husband and some more lunch for the visit. It was a Friday. As soon as we walked in, Kate-2 asked if we had heard the news. “Kate-1 died last night at about 8:00 pm” she said. Sad news for everyone, but especially Kate-2. She had lost someone that she considered a sister. After some remembrances of the old days, we started to talk about Kate-2’s goals. She was pretty immobile but hoping to start transferring without assistance soon. Other than her terrible arthritis, there really wasn’t anything physically wrong with her. Eventually we left and walked to our car. When we got inside I said “I’m really worried about Kate-2. Losing her friend leaves her with very little to connect her or give her a reason to go on”.

The next week, I went on a long-delayed vacation. I posted lots of photos to Facebook, and Kate-2 “liked” a number of them. I returned home the first of September. A few days later, I saw a notice in Facebook about a neighborhood celebration for Kate-1, who had died of respiratory failure in the hospital three weeks previously. I thought I’d like to attend the gathering, and I started to wonder about Kate-2. Was there some way that she could attend? Had she already made arrangements to go in a wheelchair in someone’s van? Maybe I could have some of the staff at the ALF help transfer her into my car.

I went to Kate-2’s Facebook page to message her, as that was how we usually set up our visits. That’s when I saw her death notice. She had passed away on August 30^th, outliving her friend by less than two weeks. I can’t help but believe that that’s how she wanted it.

The Manakalua Peninsula and Kalaupapa

 Here are some photos from our trip to the Manakalua peninsula on Molokai. It turns out that Blogger posts these in the reverse order that I selected, so you may want to scroll to the bottom and read your way up.

A view of the peninsula looking south, with the sea cliffs beyond.

The view from the visitors' quarters to the cliffs.

The detached kitchen.

 The Kalaupapa Care Home. Two patients live here and two live independently in houses on the site. Four more reside in Honolulu, with two in assisted living and two in the community. All patients are now in their 80s and 90s. I was allowed to interview a gentleman who has been here since the 1950s. the last patient was admitted in 1969.

The view from the kitchen window.

A typical house in the Kalaupapa settlement. Houses are provided for residents, National Park Service workers, and medical staff from the Department of Health.

A shot of the patient's crafts room, now abandoned.

Here Ronnie and I have climbed partway up the sea cliff. The settlement can be seen on the coast in the distance.

This is the terrain along the single pathway that can be used to go up and down the cliffs. It's very time consuming with lots of switchbacks.

A view of the Long House. Patients would enter one side and visitors the other. A table and screen separated the two so there was no contact.

St. Philomena Catholic Church is in the heart of the settlement and still active. There are two nuns in residence. While we were there, Father Pat had two guests: a priest from Anaheim, California and a nun from Portland, Oregon. The sister had a great deal of experience with Hansen's Disease patients in Vietnam, where there is scant access to medications. She told me there are three colonies in Vietnam for patients and showed me a number of photos of patients with severe consequences including missing digits and severe skin damage.

Near the visitors' quarters, on the flat peninsula with the sea cliffs beyond.

The lava covered coastline.

My room in the visitors' quarters. Cool air comes from the breeze. There is an electrical outlet and a ceiling light. The bathroom is at the end of the hall. Many of the buildings on the campus date from the 1940s to 1950s, with some going back to the 1800s. The National Park Service staff have their hands full maintaining the remaining buildings. Both termites and fires are a major threat. Some buildings have fallen into disrepair.

Hallway in the visitors' quarters. Jalousie windows are the standard here for letting in breezes. They are also quite common in Honolulu in the many homes that do not have air conditioning.

A pretty rainbow over the cliff. The staff living on Kaluapapa call the rest of Molokai "topside" because the entire island aside from their 2 x 2.5 mile peninsula lies above the cliffs.

The Kalaupapa lighthouse, located at the tip of the peninsula near the airport (actually a landing strip).

The spectacular views looking east from Kalawao. At one time, there were patients on both the Kalawao side, which is windward/east, and the Kalaupapa side, which is leeward/west. Many years ago, all patients were moved to Kalaupapa because the weather is less harsh on that side.

Enjoying the view.

Visiting one of the old churches on the Kalawao side of the peninsula.

The peninsula is notable for the many cemeteries where former patients and staff reside. There are said to be 1,000 known gravesites, and perhaps 8,000 burials in total. At its peak, the colony was home to 1,200 patients.

We snuck up on a monk seal lounging on the beach. We also saw lots of deer, mountain goats, wild pigs, and mongoose.

Entering the Kalaupapa National Historical Park.

Ronnie and Robin, our tour guides.

Many thanks to nurse supervisor Veronica "Ronnie" Mitchell (center) for sponsoring Jackie and me for this trip.

The Manakalua peninsula as seen from the air. The Kalaupapa settlement is on the water's edge in the foreground, and the sea cliffs that blocked escape are behind it.

The sea cliffs of Molokai are some of the tallest in the world and provided a natural barrier to keep patients on the Kalaupapa settlement.

We flew east from Honolulu, here were are passing Diamond Head crater and the east end of Oahu.

On the local Mokulele Airlines plane leaving Oahu, headed one island to the east: Molokai.

Hansen's disease in Florida

 

For those interested in Florida history, here's a link sent to me by my brother. This podcast includes discussion of the historic distribution of leprosy in Florida, including a concentration in Key West. 

https://www.youtube.com/watch?v=-Cm5PE9QV_s

A side story before the trip: Visiting a friend

 

I made another visit to see my friend Kate this weekend. When I arrived, she was dozing in her recliner, her lower legs wrapped in bandages to protect her very friable skin. She’s a retired nurse, so we always have things to talk about. Kate lost her husband to a stroke almost ten years ago. Earlier this year, she made the decision to part with their expansive family home. Her rheumatoid arthritis had become so crippling that she was no longer ambulatory. She moved, with the help of friends and family, to a nearby assisted living facility.

Kate shares that she is sad about how her life has turned out, but she accepts things as they come. Gary left her well provided for, so she is able to afford her own suite of rooms in the ALF. She brought several pieces of furniture with her, so she has some material comforts from home. After a medical tech brings in her noontime drugs, she comments “There is another one that I kind of have a crush on. I know I’m 84 years old, but he’s so handsome”.

We reminisced about her career. Kate graduated from a hospital school of nursing in Rochester, Minnesota. She then took a job in an intensive care unit in Michigan. While living there, she bought a VW bug on a day trip to Ypsilanti. She and her roommate decided to be adventurous and move to California. They shipped their belongings in trunks (those were the days), jumped in the Beetle and headed west.

After working in the city for a short time, she heard about a young man named Gary who was coming to town. A family member told him to pay a call on Kate, and told Kate she should meet him. Gary came to her apartment. Kate peered out the peephole in the door. “All I could see were these big blue eyes staring at me” she said. Of course, she opened the door. For their second date, Gary took her to Fisherman’s Wharf, then for a romantic drive to the hills above the city, where they could look down at the lights.

After their daughter and son were born, Kate stayed home for a few years. Gary’s job then brought him to Tampa. Kate mused about going back to work, and Gary told her it was time to consider whether she was going to keep her nursing license or not. She quickly decided to take one of the “RN refresher courses” that were popular at the time. She completed the course and started work at a local hospital.

Terry, a patient, was admitted to her unit one evening. His hygiene was poor, and several of the staff commented critically. Kate thought of him as a child of God and decided that the next day she’d take him a coffee and get to know him. Terry, as it turned out, was employed as a garbage collector but had no stable housing, so getting a bath was difficult. As they chatted, another visitor came in, wearing a shirt with the logo of a local them park and a red cross. Kate commented that it must be a fun place to work. “It is, and we are hiring” was the response. That is how Kate came to spend the last 21 years of her nursing career working in the medical facility at Busch Gardens.

Kate's full story bears many lessons about dealing with adversity, coping with loss in the later stages of life, and commitment to one's career. Perhaps the most striking to me is the message of the last part of this short summary. Extending courtesy and kindness may not always pay off, but in this case it did. It couldn't have happened to a nicer person.

Major references

 

Above is a photograph of the Kalaupapa peninsula on the north shore of Molokai. To the right is the mountain that isolates the peninsula from the rest of the island. To the left in the photo, at the tip of the peninsula, is the tiny airstrip where we'll be landing.

Here's a link from the National Park Service that provides some history on the Kalaupapa National Historical Park: http://npshistory.com/publications/kala/index.htm

Four books I'm using as major references for this work are:

The Colony: The Harrowing True Story of the Exiles of Molokai (John Tayman, 2006). This book is generally considered the definitive history of the colony at Kalaupapa.

Pilgrimage & Exile: Mother Marianne of Moloka'i (Sister Mary Laurence Hanley, OSF, and O. A. Bushnell, 2009). A biography of Mother Marianne Cope (Barbara Koob), a leader at the Kalaupapa settlement for many years. Her time there overlapped with Father Damien. She is buried at the settlement.

Shoal of Time: A History of the Hawaiian Islands (Gavan Daws, 1968). A thorough and readable history of the islands focusing on the time since the first White explorers arrived.

Unfamiliar Fishes (Sarah Vowell, 2011). This book focuses on the Americanization of Hawaii. 

Background reading

 

If you go way, way back in this blog to my entry of August 30, 2010, you’ll see a post about my first trip to Carville, Louisiana. Carville is the site of the only Hansen’s Disease treatment center in the continental United States. It resides in the “leprosy belt” that runs from Florida to Texas, including the states in between. Traditionally, these states have been the sites of the majority of leprosy cases in the contiguous states, but other states also had residents who had the infection. The states within the leprosy belt also happen to be the territory of the nine-banded armadillo, a main source of transmission to humans.

 

And now for some background reading:

Here's a systematic review in a Brazilian tropical medicine journal that is openly available and discusses armadillos as a vector and M. Leprae infection in these animals:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6746198/

 

Here is an article from the Minnesota Post about the prevalence of leprosy in that state in the 19^th century within the Norwegian immigrant population. The article also mentions Dr. Gerhard Armauer Hansen, the Norwegian physician who first identified that the disease might be bacterial in origin. Hansen is the eponym for Hansen’s Disease, the less stigmatizing way to refer to the condition.

https://www.minnpost.com/mnopedia/2018/11/how-minnesotans-handle-leprosy-around-the-turn-of-the-20th-century/?gad=1&gclid=Cj0KCQjwoeemBhCfARIsADR2QCtJvoexuRW8LN1hB8dlNbFej0MqHpjS2u7ozF6Ot3O1nxRiZGZF-1saApJdEALw_wcB

 

Here’s a link to the CDC site that addresses Hansen’s Disease in the United States.  Note there has been a recent resurgence in Florida.

https://wwwnc.cdc.gov/eid/article/29/8/22-0367_article

General information from the CDC: https://www.cdc.gov/leprosy/index.html

 

Here’s a link to the World Health Organization site: https://www.who.int/health-topics/leprosy#tab=tab_1

 

Finally, here’s a web page from the Health Resources and Services Administration (HRSA) about the history of the Carville program. It’s an easy read with lots of photos. I’ve now been to Carville three times and highly recommend it for those with an interest in public health history.

https://www.hrsa.gov/hansens-disease/history