ethics, healthcare, memories, Neighbors

Repost: Perpetuating the genetic nightmare…

I am reposting this piece from August 30, 2017, because it goes with the book review I reposted today. It appears as/is. Special thanks to Leevan Jackson who made the featured photo available through Creative Commons.

I have written a few times about my childhood neighbors, people who lived across the dirt road from us in Virginia.  In 1980, when we moved to Gloucester, they were a family of four.  There was a mother, father, brother and sister.  The father did not live at home.  He was in his early 30s and lived at the local psychiatric hospital in Williamsburg because he was suffering from Huntington’s Disease.   The mother was raising her children, twelve year old Michael and nine year old Leslie, by herself. 

In 1980, Michael was also suffering from Huntington’s Disease, having inherited the defective gene and developed the disease much earlier than most people with Huntington’s Disease do.  He died in 1982.  His and Leslie’s father died a couple of years after that.

I was eight in 1980.  I met all of these people when I was a child.  Leslie’s mother worked for my dad for several years until Leslie’s paternal grandmother died and Leslie’s mom inherited some money.  Leslie’s mom bought her own picture framing business and competed against my dad.  The business eventually failed.

Leslie and I weren’t close friends, but we did grow up together.  My parents included Leslie and her mom on a couple of family trips.  In 1985, I remember we all went to Kitty Hawk, North Carolina together.  I seem to remember Leslie and her mom coming with us to Natural Bridge, Virginia once, too.  I grew up waiting for the bus with Leslie and used to dog sit for her mom when they’d take trips to the Smoky Mountains.  Leslie was bright and talented and probably could have done some great things had she not been doomed to get Huntington’s Disease while still fairly young.

Leslie died in 2010, having battled the disease for several years.  She was 39 years old.  She’d given birth to three kids.  One of them died in a freak accident in 1995.  Leslie’s little daughter, just two years old, was accidentally run over by Leslie at the local Walmart.  For some reason, Leslie had allowed the little girl to stand up behind the driver’s seat.  If I recall correctly, she was just coasting forward to the drink machines and, for whatever reason, decided not to put the kid in a car seat.  Leslie had inexplicably left the car door open and the girl fell out and ended up under the car’s tires.  Her older child, then just three years old, was also there.  In 2012, when he was 21 years old, that child would also die in a car accident.  I have to wonder if the accident was really an accident or if the young man had started getting symptoms of Huntington’s Disease and decided to commit suicide. 

In 1996, Leslie had her third child, another son.  He is the only one of her children still living.  I have never met Leslie’s youngest child, but I know his family well.  I also know his dad, since he was in my class in school.  In the 80s, Gloucester was the kind of place where everyone knew each other.  I also knew of Leslie’s older son’s family, since his grandmother used to clean my parents’ house. 

Last night, I decided to look up Leslie’s sole surviving son.  I see that he recently became a father.  I have to wonder how much exposure he got to his mother when she was sick.  I didn’t see Leslie during those years because I left our hometown, but I do remember meeting her father and seeing her brother on a daily basis.  I remember what Huntington’s Disease looked like at an advanced stage.  It’s absolutely devastating.   

I just started reading a book about a woman who married into a family with the Huntington’s Disease gene.  The woman fell in love with her husband before he knew his mother had Huntington’s Disease.  She was dating him when he and his three older sisters found out why their mother wasn’t around when they were growing up.  She’d been in a psychiatric hospital.  The family patriarch wasn’t much of a father figure, so it was left up to the eldest daughter to take care of everyone.  Somehow, the four kids grew up not knowing that their mother had a genetic disorder.  I’m probably halfway through the book so far… The author decided to play the odds and have a son with her husband.

I learned in the book I’m reading that famed songwriter, Woody Guthrie, had Huntington’s Disease.  He had eight children, five of whom died young.  His second of three wives, Marjorie Guthrie, started what would eventually become the Huntington’s Disease Society of America.  Marjorie had four children with Woody, including famous singer-songwriter Arlo Guthrie.  Woody was married to his third wife for just a year before they split; he died in 1967 at age 55.  Woody was never really treated for his disease.  People thought he had schizophrenia or was an alcoholic, due to the extreme mood swings the disease caused.  Because he was famous, his death brought awareness to Huntington’s Disease.  It looks like Arlo and two siblings have escaped their father’s fate.  Today, I very much enjoy listening to music by Arlo’s daughter, Cathy, who plays ukulele in the duo, Folk Uke, with Amy Nelson (Willie Nelson’s daughter).

One of Woody Guthrie’s most famous songs…
Arlo Guthrie performs “Alice’s Restaurant”…
Cathy Guthrie and Amy Nelson performing as Folk Uke.

Every child who has a parent with Huntington’s Disease has a fifty percent chance of developing the disease.  Huntington’s Disease, although genetically perpetuated, is not like cystic fibrosis.  With CF, both parents must have the genetic defect.  Even then, a child born to parents carrying the CF gene has a one in four chance of getting cystic fibrosis, a one in four chance of being clear of the gene, and a two in four chance of being a carrier.  With Huntington’s Disease, it’s a one in two chance.  And if you have the gene, you will get the disease and likely die from it.  There is no treatment or cure for Huntington’s Disease.

A few months ago, I wrote a post about the ethics of knowingly passing along defective genes.  That post was inspired by Zach and Tori Roloff, stars of the TLC show Little People Big World.  They’d just had a baby and some people were saying that they shouldn’t have, since Zach has achondoplasia. Their son, Jackson, also has achondoplasia, which is a type of dwarfism.  For the record, I will say that dwarfism is not quite the same thing as something like CF or Huntington’s Disease.  A person who has achondoplasia can be basically healthy, though abnormally short.  CF and Huntington’s Disease are very serious and debilitating.

I think Huntington’s Disease, in some ways, is crueler than CF is.  Many people with CF are sick from babyhood.  They grow up sick, although some sufferers are much sicker than others.  They often know from a young age whether or not they will be affected by CF. 

A person with a family history of Huntington’s Disease can start life completely normal and not get sick until they’re approaching middle age.  They can develop lives, start families, have careers, and ultimately be stricken by a disease that makes them lose control of their bodies and their minds.  People with Huntington’s Disease grow up wondering if and when it will strike and whether or not they should get tested for the gene.  If they get tested, the news could be good.  They might not have the gene.  Or it can be bad; they have the gene and will eventually get very sick and probably die young.

Leslie’s family was devastated by Huntington’s Disease.  It seemed the gene in her family was worse than some others.  I remember hearing that her grandfather, whom I never met, had the disease.  He’d been adopted and never knew he had a genetic anomaly, so he and his wife, Vashti (whom I did meet), had a family.  I know that besides Leslie’s dad, at least one other sibling got the disease and died young.

I remember my mom telling me, quite emotionally, that Leslie’s mother should have had her daughter’s tubes tied when she was a baby.  I explained to my very practical mom that it would have been unethical to tie Leslie’s tubes.  What if she had been born clear of the gene?  There was a fifty percent chance that she had the defect, but there was also a fifty percent chance she didn’t.  She could have lived a completely normal life.  In 1971, when Leslie was born, I doubt the technology was there to know.  By the time genetic testing was available, I’m sure Leslie didn’t want to know.

I wish Leslie’s grandson much luck.  I truly hope he isn’t going to be afflicted by this terrible disease.  Life is a crap shoot.  He has an aunt and uncle who may or may not have had the genes for Huntington’s Disease and still died very young.  Not having the misfortune of being burdened by a genetically passed disease myself, I can’t even know what it’s like to live with the knowledge that I’m doomed.  Hopefully, Leslie’s son and grandson have escaped Huntington’s Disease.  That disease is a fate I would not wish on my worst enemy.  On the other hand, if Woody Guthrie hadn’t had children, we would be missing out on some great music.

I’ll write a review of the book when I’m finished with it.  It’s amazing what provides food for thought…  And it’s also crazy that I know so much about someone I’ve never met.  It’s not the first time this has happened, either. 

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Neighbors

HOAs can be heartless…

Fifteen year old Collin Clabaugh has had a rough time of things lately. In late December 2018, at 14 years old, he was forced to move from his home in California to his grandparents’ home in Prescott, Arizona. His mother was very ill and hospitalized and his father was busy trying to take care of her. Then, in February of 2019, Collin’s mom, Bonnie, succumbed to organ failure due to medications she was taking. Two weeks after that, Collin’s father, Clay, killed himself. He couldn’t bear to go on without his wife. Collin has been living with his grandmother, Melodie Passmore, and her husband, Randy, at The Gardens at Willow Creek ever since.

Now, Collin and his grandmother are the subject of worldwide news coverage because the members of the homeowner’s association at The Gardens at Willow Creek have demanded that Collin move out by June 30, 2020. Why? Because Collin is under 19, the minimum age to reside in the senior living community where his grandparents had bought their home four years ago. The Gardens at Willow Creek is an age restricted community for people over age 55. Someone complained about Collin’s presence, prompting the HOA board to send Mrs. Passmore a strongly worded legal letter.

I dunno… sometimes rules are meant to be broken.

I hosted a lively Facebook discussion about this situation yesterday. A couple of people pointed out that legal documents must have teeth, otherwise they can be violated. I fully appreciate that point, although I also think there are extraordinary situations in which rules should be bent. Personally, I think a teenager who has nowhere else to go other than foster care after losing both parents to early death is in an extraordinary situation. There’s no way the Passmores could have foreseen that their grandson would be orphaned when they purchased their home. According to Mrs. Passmore’s Facebook post about this incident, they bought there because they could afford the house and liked it, not because they necessarily cared about living in a childfree community.

I did read in an article yesterday, that thanks to all of the furore over this situation, the HOA seems to want to try to reach a workable solution with the Passmores. I hope they do come to a resolution, since moving would be a true hardship for this family. The Passmores are in their 70s and no doubt expected that this would be the last home they’d ever need to buy. They’ve also spent a lot of money fixing up their home to their liking. Unfortunately, I suspect they’ll end up having to move, but maybe they’ll find a better place with conditions they can live with. Sometimes moving to a new home can be a blessing. It certainly has been for us on multiple occasions.

I hope that when Bill and I finally end our global adventures, we are able to buy a home in a rural area without having to deal with a homeowner’s association full of busybodies. I do understand why some people like them. They want to make sure their neighbors have to respect their rights and can’t do things that affect property values. But why purchase a home if you have a group of people telling you who can live there, how many pets you can have, what you can grow in your yard, and what color you can paint the shutters? If you don’t obey the covenants, which are sometimes enforced in an arbitrary manner, you can end up getting fined, in legal trouble, or even find yourself in foreclosure. In that situation, I would rather rent. That way, if the HOA or the landlord get too uppity, intrusive, or controlling, moving is much easier to do.

Of course, there are downsides to not living with a HOA. You might have neighbors who have no respect for other people and tell you to fuck off when you ask them to turn down their music or quit putting their dilapidated cars on cinder blocks in the front yard. But then, a lot of times, you can call the police if the neighbors are violating the law. I think Bill and I were happiest with our living situations when we were in homes that were out in the country. Neighbors were some distance away, and we had lots of trees around us for privacy. In Georgia, we lived in a house way back in the woods. In the summer, we couldn’t even see our neighbors’ houses. The only people who ever rang our doorbell were Jehovah’s Witnesses. Our house in North Carolina was somewhat similar, in that it was rural and quiet, although the neighbors were closer. My idea of hell is living in a subdivision with zero lots… or in a condo or apartment where I have to share walls with three or four other families. I hope we never have to live that way again, although I would never say “never”.

I don’t know where we’ll be going after we’re done in Wiesbaden, but I hope it’s a place where people have hearts that still beat. Anyway, I wish Mrs. Passmore and her grandson, Collin, luck. Hopefully, they have a sharp lawyer who can help them out with this problem. Barring that, I hope their house sells quickly and they can move somewhere where people aren’t so compassion challenged.

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Neighbors, nostalgia

Repost: Hardcore Rednecks

Today’s featured picture is a screen grab from a news story about a guy who “car surfed” on an Interstate in Miami, Florida.

Merry Christmas Eve, everyone. I have decided to rerun this post from my original blog especially for my dear friend, Audra, who also grew up in Gloucester County. Bill and I are currently visiting Audra in France, and last night I was trying to tell her this story… I had forgotten the official term for this particular type of entertainment… This post made its debut on January 3, 2018. Enjoy!

This morning, I was reminded of a family I used to know.  They were what you’d call “hardcore rednecks”.  When I was growing up in Gloucester, Virginia in the 1980s, there were a whole lot of “hardcore rednecks” in my midst.  There are probably still a lot of them in that area, although I haven’t been to visit Gloucester in years.

I grew up in a house right next to U.S. Route 17, which was to the left of our home and ran through Gloucester on its way to its terminus in Florida.  Across the highway on the left, there was a big awesome looking house that I never knew anyone to live in.  I often wondered when someone would fix it up.  It was like a mansion.  There was another big estate to the right of our house, too. Gloucester has an interesting mix of beautiful old homes and sprawling plantations, as well as dilapidated trailer parks. The zoning was such, back in the day, that one was equally likely to encounter both types of homes in any given neighborhood.

Also to the right of our house was a dirt road.  Not far down that road was another, less developed dirt road.  Turn right and you could go all the way to the power lines, which was kind of the apex of the redneck world I lived in during the 80s.  When we moved to Gloucester in 1980, that dirt road sort of existed, but no one lived back that way.  The whole area was mostly woods with lots of copperhead snakes and such.  In the decades since then, the neighborhood has developed quite a lot.  It was still mostly undeveloped when I was a kid.  Around 1984 or so, people started buying land back there and building homes.  Most of the homes built back there in those days were of the mobile variety, although I think since then, more folks have built actual houses.

I knew most of the kids who lived back there because we all went to the same school and rode the same bus.  We also used the same bus stop. 

I played with some of those kids.  They appeared to be rather impoverished.  The family I’m thinking of this morning lived in a single wide mobile home all the way at the end of the dirt road.  One time, I went inside their trailer and noticed a huge hole in the floor.  The place was always a mess.  I remember politely declining one time when the oldest boy kindly offered me a piece of chicken.  Even in those days, I had a sense of self-preservation after having seen their kitchen.

There were three kids living in that trailer.  The eldest was in my grade.  He was very large… tall and kind of fat.  Most of his clothes didn’t fit him properly and his teeth were yellow, broken, and scuzzy looking.  I doubt he went to the dentist very often, likely because his parents couldn’t afford to take him. 

The second kid was another boy, one or two years younger than me.  I remember him being very funny and smaller than his brother, but also very unkempt and dirty with shaggy blond hair. 

The third kid was a daughter.  I don’t remember how much younger she was.  I didn’t hang out with her as much because she was several years younger.  What I remember most about her was that she was kind of witty, always had bare feet, and she had a lazy eye that made her look a little off kilter.  Like her brothers, she had missing, crooked, and scuzzy looking teeth.

All three of these kids were really dirty most of the time.  I noticed they were dirty, but didn’t really have too much of a problem with them.  I was friends with the two boys because they were my age.  The oldest kid was in some of my classes.  Despite being rather neglected looking, he did well in school and got good grades.  Last I heard, he was managing a supermarket near my house.  Unfortunately, the supermarket closed; it was a victim of the Walmart invasion of the 90s. His younger brother was hilarious. I remember he used to go around singing songs from The Best Little Whorehouse in Texas, which was a popular movie at the time.

One thing that I distinctly remember from those days was that these kids’ mother would drive them back and forth to the bus stop, which was right outside my house on Route 17.  It wasn’t a bad thing that she did this, since their trailer was pretty far back on that dirt road.  Although it probably would have done them some good to walk, it would have taken them a good twenty or thirty minutes to get to the bus stop from where they lived. 

In the afternoons, their mom would also meet the kids when they got off the bus and drive them home.  Oftentimes, she’d let them ride on the hood of her car.  They’d climb up on their mother’s hood– she drove a dirty old sedan that was a borderline land yacht.  It was silver with a burgundy interior.  She’d ferry them home on the hood as they laughed the whole way.  It looked like a lot of fun.

Obviously, these aren’t the kids from my neighborhood, but they’ve nicely captured the mood in their video…

In the 80s, people did this kind of shit all the time… especially in rural Gloucester County.  I was kind of jealous of those kids, because my parents would never let me ride on the hood of the car.  They would let me swing monkey like on a bar in my dad’s pop top VW van, though.  People were less safety conscious in those days.  We didn’t even have a seatbelt law in Virginia until 1988. 

I can’t even imagine what would happen today if a mother let her kids ride on the hood of a car, the way this woman did back in the day.  No one batted an eye back then.  It was just part of growing up in a redneck area… kind of like going to the landfill to play, not that I ever did that.  I remember Bill telling me his ex wife used to play at the landfill.  In her case, I’d totally believe it.

I mentioned these kids to some friends and one of them said, “Wow, that’s pretty hardcore redneck.”  It occurred to me that, yes, I was exposed to some very redneck people when I was growing up.  And given that this friend is from rural Alabama, I figure she’d know the type.

Looking at Google Earth, I see that old dirt road is still dirt, but there are more houses back there and the road is longer than it used to be.  It looks like that disaster of a trailer is still there, too.  Maybe it’s not the same trailer, but there is a mobile home still there.  The area looks much the same as it did last time I was visiting my old house.  It actually makes me a little sad to see how that neighborhood has developed since 1980.  I remember when that whole area was full of trees and completely unspoiled.  Walmart has brought an air of suburbia to a place that used to be very rural. 

But yeah… I grew up around a lot of hardcore rednecks.  They were pretty good folks for the most part, though a pretty far cry from the suburban kids I knew when we lived in Fairfax County in the two years before we moved to Gloucester.  Hell, they weren’t like the fellow Air Force brats I knew in England, either. 

Riding on the hood of a car is called “car surfing“.  A lot of people have been killed doing it.  Oh… and I see this was a thing in 1985 or so, which was around the time the kids in my neighborhood were doing it.  I guess they were more ahead of their time than I was. I wonder what those kids are doing today… and if they’ve ever car surfed since those days in 80s era Gloucester.

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Neighbors, psychology

The neighbor from HELL!

Yesterday, I was on Toytown Germany, an English speaking forum for expats. I used to read it all the time when we lived in Germany the first time. Those were the days before Facebook, and I found it had a wealth of information for English speaking non-Germans. I still like reading it sometimes, because a lot of the people who use that forum are from Europe and aren’t affiliated with the U.S. military. They offer interesting perspectives and insights that my countrymen can’t deliver.

A little mood music for this post…

So anyway, I came across an interesting thread from 2011. A woman calling herself Gutgenug was living in Hesse, in a town called Heppenheim. Her husband was in the Army and she worked for the Army herself, at an installation that has since closed. Gutgenug’s story was an amazing one… and she had a few skeptics in her midst. I must say, having lived in Germany for awhile, I believe what she writes. I especially believe that she works for the Army because she has mastered the Army writing style.

Back in November 2011, Gutgenug wrote that her next door neighbor was suing her because she used incense in her house. This man, who, along with his wife, was a chain smoker, claimed that the incense was “offensive” to him. He also didn’t like that she was using candles in her house. He called the police on her several times a week. The police would come over and talk to her. When she later called the police on him, they would hang up on her. She got so freaked out that she had anxiety attacks and didn’t even want to leave her house.

Now… this would be bad enough, but over the weeks of her very long thread, she described increasingly bizarre harassment from this man. She claimed he set up an industrial sized fan, which he aimed at her house and ran for hours. She even shared a picture of the fan, the kind of equipment one uses to quickly dry paint or carpeting. She wrote that he climbed their fence and took down her windchimes. According to Gutgenug, he would purposely block them in their driveway and surveil them as they went about their daily business.

I started thinking about all of the neighbors we’ve had over the years. Some of them were annoying. I’m sure we’ve annoyed people, too. I have never encountered anyone quite as psycho as this lady’s neighbor was. I kind of hope some of what she wrote is made up… because just reading about some of his tactics was raising my blood pressure. It’s hard to believe that the local police would do nothing to help her, either. According to her, she actually had to call someone at the Army installation in a position of high authority. That person had connections with the German police and they had to go jerk a knot in the people running her local police department.

As the matter continued to escalate, the neighbor brought criminal charges against Gutgenug for filming him. She was actually filming the fan he kept aiming at her house, but he was apparently in the film and evidently, that’s against the law. He allegedly told her she and her husband should go back to America, since Germans didn’t want us here. And he supposedly is “better” at using the law to harass people, so she should just give up and leave.

Later, it came out that her landlord used to be friends with the neighbor. They are both handymen and now compete for business. Some people speculated that perhaps the neighbor was getting back at the landlord by driving out his tenants. By the end of the thread, it was revealed that the guy had driven several other families out using the same tactics and the local police reportedly didn’t care.

As interesting as the story was, I was even more intrigued by the solutions people came up with, a lot of which included their own stories about Nachbarkrieg (neighbor wars). One lady wrote about how one of her neighbors had committed Ausländer Unfreundlichkeit by calling her “Ausländer Schwein” (foreign pig). It’s against the law to insult people in Germany. The neighbor also called the police on her for having people over on a Sunday. When she opened the door to the police, she wrote that she almost fainted, because she was afraid something had happened to her kids. Actually, it was just the neighbor harassing her for having company that was too “loud” on Sunday. When the woman’s German husband went to mediation, the insult was brought up and the neighbor was quickly shamed for resorting to personal attacks. In the end, everything was settled amicably, and the troublesome neighbor moved away.

ZZ Top also does a version… it’s a bit different. Bill went to the same high school Billy Gibbons did, though not at the same time.

Another person suggested screaming at the guy in English. As tempting as that sounds, it also sounds like the kind of tactic that only works if the other person is in their right mind. It sounded to me like this woman’s neighbor, if he was the way she described, was not quite sane. He seemed to have a lot of time on his hands, as well as the imagination on how to creatively drive someone up a wall. And one guy suggested finding a large person to beat the living fuck out of the guy. Of course, he also mentioned that taking that approach might make the legal issues even worse.

Complicating matters for Gutgenug is that she was raised in an abusive environment. Having been brought up by an abuser, she has issues with anxiety and is passive. I got the sense, having read her post, that she may have served in the military herself. I would imagine that if she was, in fact, a veteran, she probably had some trouble with the job. I don’t know this from personal experience, but I think it would be difficult for a woman to climb the ranks if assertiveness is an issue. Also, I was a little surprised that if she had all of these anxiety issues, the Army let her come to Germany in the first place. Before people in the military are assigned overseas and allowed to bring their families, they usually have to go through EFMP screening. EFMP stands for the Exceptional Family Member Program, and it’s intended to identify people with special healthcare or educational needs so that they don’t get sent someplace where their needs can’t be met.

I had to undergo that screening myself the first time we moved to Germany and, because I had been treated for depression and asthma, was forced to join the program. Fortunately, my husband’s command didn’t have a problem with it and it was a non-issue for us, but I know other people have had assignments cancelled over EFMP issues. It sounds to me like Gutgenug’s problems, if known to the Army, would definitely warrant being put in the EFMP. I ranted about my own experience with EFMP. But anyway… I have also learned that in the military, when it comes to things like EFMP, a lot comes down to who you know, who you are, and who can “unfuck” things for you.

A few weeks ago, I wrote a post about German passive aggressiveness. That post is mostly about a couple of recent legal cases within Germany that involved two different men who were covertly trying to kill people. One man was a handyman who had issues with his neighbor and booby trapped her firewood. Another was a guy who just wanted to see what would happen if he poisoned his co-worker’s lunch. Although there are not nearly as many weapons here as there are in the United States (where the harassing neighbor guy might have been shot for his shenanigans), it’s easy to see that pissing someone off in Germany can lead to repercussions that may be just as sinister as being blown away.

In any case, it looks like Gutgenug eventually went back to the States. Her landlord was placed on the “no-referral” blacklist, and the housing office was no longer allowed to refer Americans to his home. It made me kind of sad to read Gutgenug’s story. I really enjoy living in Germany, for the most part. Yes, I’ve run into some true assholes here, but none any worse than people I’ve met in my homeland. And among the assholes are many wonderful people who are helpful and kind. It’s hard to be so far from home and, I’m sure, being in a foreign country where you can’t speak the language fluently and the natives are doing their best to mess with you, is extremely stressful. Life is short and no one has the time for that. If it had been me, I probably would have just moved out, but if Gutgenug’s story is for real, then it does at least sound like the situation was dealt with at last. Kudos to her for that. Not everyone has the courage or ability to fight back in these situations.

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