Tag Archives: genetics

family, funny stories, LDS, Twitter

Turns out I have both knotty and nutty family ties…

I woke up at 5:41 am this morning, after having had a vivid dream about a southern town somewhere near where I came of age. I don’t remember much about the dream now. Sometimes, I wish I had Bill’s discipline, when it comes to recording dreams. He writes his down and sends them to his Jungian analyst. They talk about Bill’s dreams every week during their video chats.

I have vivid dreams, too, but I don’t remember most of them for long. Maybe I’m genetically less inclined to remember my rapid eye movements. It’s possible that this is a family trait.

Several years ago, I submitted samples to 23andMe and Ancestry.com. I started with 23andMe, because it seemed to be the more health focused of the two. It also had no ties to Mormonism. Some people may not know this, but the LDS church is big into genealogy. It’s so that members can “baptise” their dead family members who were around before Mormonism was. That way, those dead people can choose to be LDS in the afterlife.

Living members of the Church of Jesus Christ of Latter-day Saints go to temples and do proxy baptisms for dead members of their families. Some also do “temple work” for dead celebrities, too, although they’re not supposed to do baptisms for people who aren’t relatives.

I know that, historically, descendants of Holocaust victims got pretty angry with the Mormons for “dead dunking” their family members murdered during World War II. Frankly, I find that practice pretty offensive, especially for people who died in the Holocaust because they were Jewish. These were people who literally died horrible, gruesome deaths for their beliefs. It’s beyond tacky to do a proxy baptism to allow dead Jewish people to be Mormons, as if they were wrong all along.

Faithful church members who do proxy baptisms for non-related people will simply shrug off the thought that they’re being offensive. They say that if the church isn’t true, it doesn’t matter if they “dead dunk” Holocaust victims. The ceremony is meaningless.

If you’ve been following this blog, you may already know why I don’t like Mormonism. These days, I’m somewhat less vitriolic toward the church than I once was. I still don’t like the church’s doctrine because I think it’s harmful to some people. My husband’s ex wife used it as a “reason” to alienate Bill from his daughters. She got everyone to join the church. Then, when Bill realized he didn’t believe in Mormonism, she told his daughters that he wasn’t worthy to be their father. He wouldn’t be going to the Celestial Kingdom because, when he ultimately resigned his membership, he turned his back on the “one true church”. Never mind that she’s not going there, either.

Ex has now apparently given up on Mormonism. It doesn’t suit her purposes anymore. However, Bill’s daughters are still believers. Younger daughter is particularly faithful. I also know that the church, which Ex had once tried to weaponize, was very helpful in helping younger daughter escape her mother’s clutches. I’m grateful to church members for that… and I know there are good people in the church. Nowadays, I try to be less negative about the LDS church, even though I still don’t like the doctrine. In fairness, though, I’m not a very religious person, anyway.

Ancestry.com has no legal ties to Mormonism, but it was founded by church members who, no doubt, tithe. I know that church members can be very persistent in tracking down inactive members. I don’t like to support organizations that make pests of themselves, especially religious organizations. After some time, I changed my mind about Ancestry.com. It probably happened when Bill started talking to younger daughter again, and she proved that she isn’t completely brainwashed.

23andMe recently made me .2 percent less Brit… 😉

After I changed my mind about Ancestry.com, I finally did a DNA test with them. The results were very interesting. DNA wise, my results were very similar to what 23andMe found. Both tests have my DNA down as extremely British and Irish. There’s a slight discrepancy on some of the other DNA predictions. 23andMe has me down as having a little Finnish and Spanish ancestry. Ancestry has me with Norwegian, Swedish, and Welsh. However, on both tests, my DNA has me as well over 90% British and Irish. Ancestry.com breaks it down even further, indicating that my DNA is (at this writing) 56% Scottish. No wonder I feel so at home there!

My people were homebodies, I guess…

One of the other advantages to Ancestry.com is that there’s a ton of genealogical data there. Recently, a lot more data has become available for my own family origins. I’ve been updating my family tree accordingly, finding little historical twigs from people who came from Switzerland, Sweden, The Netherlands, Germany, and France. Earlier test results on the DNA tests had indicated that I had some origins in those countries, too. The results change as more DNA is added to the databases. For example, at one time, 23andMe indicated that I had Swiss DNA. Then it changed, and the Swiss connection went away. But based on my family tree on Ancestry.com, I do actually have some Swiss family members.

Neither test shows that I have much French DNA, but I’ve found French people in my family tree. Ditto for Germany… I actually know for sure that I have some German relatives. However, when it comes to my DNA, the connection isn’t as clear. Maybe that’s why I’m so short! I think it’s helpful to remember that the DNA analysis traces all the way back… not just within the past few hundred years.

So far, all branches of my family tree go back to about 1500 or so, which may be when people started keeping records. But the DNA goes back much further than that. It’s pretty mind boggling, if you think about it for too long. Bearing that in mind, it makes sense that my DNA would be overwhelmingly British and Irish, even though I can spot random other Europeans in my family tree. That French and Swiss DNA would be a tiny contribution, compared to the huge number of Brits who went into making me. 😉

And now, you may be wondering… what does all of this have to do with my post’s title? Well, now I’ll explain.

As I wrote further up post, I’ve recently been adding new people to my family tree. Some of it has been truly fascinating. I’ve mentioned many times that I was born and raised in Virginia. Indeed, the vast majority of my relatives were also born and raised in Virginia, starting from the 1600s, or so. My family was in Virginia from the very beginning of its existence.

I can see how they migrated from Scotland, England, and Ireland to Virginia, working their way down from Massachusetts or Pennsylvania, and settling in the Shenandoah Valley or further south, near the North Carolina border. Both sides of my dad’s side of the family are mostly from Rockbridge County. My mom’s dad came from Grayson County. Her mother came from Amherst. However, I did have at least one relative from way back who was born in Gloucester County, which is where I grew up.

All of these discoveries were fascinating to me. But then I stumbled across one that really gave me pause… Behold!

You will notice the name Fraser…

I was updating my tree yesterday, when I noticed that my great grandmother’s ancestry connects her to the Fraser family. The Frasers are a prominent Scottish clan. I know this, in part, because a few years ago, Bill and I were on a Hebridean whisky cruise, and there we met a very obnoxious fellow American. Her last name was Fraser. She wore the Fraser tartan at the two gala dinners. When I met this woman, I didn’t know much about my ancestry. I just knew that I liked the Scots. 😉 Anyway, the American Fraser woman on our cruise was very proud of her heritage and never ceased to let us know about it.

A few years later, I started to pay more attention to my husband’s ex wife’s online antics. Over the past year or so, she’s been claiming that she’s related to a certain aristocratic Scottish family. Now, I have no way of knowing if Ex is really related to this family or if this is another one of her fantasies… I do know she was adopted. I don’t know if she’s claiming ties based on her DNA or her adoptive family. But this is what she’s been posting lately…

Hmm…given that, I now have hope that my stories will make it to print. The method you enjoy…works! Please, just keep doing it; you create lives, no small feat! Remember me, though; it would be a delight to collaborate. I’m a Fraser du Lovat, by the way, & that’s fun!!

The above quote comes from a post I wrote May 16, 2022. Ex was trying to engage the actors on Outlander. I don’t watch the show myself. I just know it’s a Scottish historical romance. Ex is so swept up in it that she’s claiming to be related to a well known Highland Scottish clan, Fraser du Lovat, which has origins in Inverness. I don’t know much at all about the Frasers du Lovat, or any other Scottish clan, for that matter. I never claimed to be of particularly noble breeding myself. But, if I’m to believe Ancestry.com, I’ve also got ties to the Fraser clan… although my ancestor is Sir Alexander Fraser, 8th Earl of Philorth, which is a Lowland clan.

Apparently, I have a Fraser as a grandfather on my dad’s side…

I know from cruising on Hebridean Princess, that Highlands and Lowlands of Scotland run right into each other. We visited the Glengoyne Distillery, just north of Glasgow. The guide told us that the distillery is located on the Highland Line. Consequently, Glengoyne’s stills are in the Highlands, while the maturing casks of whisky are across the road in the Lowlands. It’s considered a Highland whisky, even though the Lowlands are literally just yards away.

I wonder if Ex would react like Blanche if she found out that we could be extremely distant relatives… Maybe she might even quit bragging about her Fraser connection.

Again, I don’t know how accurate Ancestry.com’s family tree suggestions are. I also don’t have any reason whatsoever to believe Ex’s own claims about her ancestry. She has a long history of stretching the truth. She also has a very active fantasy life. BUT… I can’t help but be amused that I apparently have ties to the same big Scottish clan that she’s so proud of… which clearly seems to make her feel “special”. She feels so special that she tweets Sam Heughan on Twitter and claims to be descended from the Fraser du Lovat clan. And I… the hated homewrecking whore (which I’m actually REALLY not)… am apparently related to the Frasers of Philorth. 😉

Of course, all of that was very long ago… and I have other family ties that are interesting for other, and frankly better, reasons. I wish I could look at the whole tree at one time. But now it’s gotten very big and unwieldy. My ancestors were very prolific babymakers. It’s a bit mind boggling to realize that when I die, so will my particular branch of the tree. Oh well. It’s probably fitting that my branch got pruned… I also blame that on Ex.

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book reviews, celebrities, mental health, psychology

My review of River of Time: My Descent into Depression and How I Emerged with Hope, by Naomi Judd

It’s hard to believe that a month ago, country music legend Naomi Judd, the maternal half of country music mother-daughter act, The Judds, was still among the living. I was in Italy at the time, enjoying an eagerly anticipated vacation. I was shocked, like so many others were, when I heard of her sudden death on April 30, 2022. Although they weren’t saying it at the time, it was pretty clear that she took her own life. It came out that Naomi Judd had suffered for many years with terrible, untreatable depression and anxiety. And, although she and her daughter, Wynonna, were to be honored for their musical achievements the very next day, Naomi simply couldn’t face life anymore.

Megyn Kelly interviews Naomi Judd about her depression, and her book, River of Time.

I was not a huge fan of The Judds, during their heyday. I do enjoy their music very much now, and I have a few of their greatest hits compilations. I read Naomi’s first book, Love Can Build A Bridge, which was published in the 90s, when Naomi was forced to temporarily retire due to her diagnosis of Hepatitis C. I also saw the made for TV movie based on that book. I also once saw Wynonna perform at a U.S. Army Birthday Ball. But, I am not a super fan of The Judds’ music, and wasn’t following news about them when Naomi died. I didn’t know about Naomi’s struggles with mental illness, and until my friend and fellow blogger, Alex, mentioned it in a comment, I also didn’t know that in 2016, Naomi published a book about her experiences with severe depression and anxiety. Although Naomi’s story clearly turned out to be less victorious than the book’s title, River of Time: My Descent into Depression and How I Emerged with Hope suggests, I decided to delve into it.

I read Naomi Judd’s book for several reasons. First off, I too, have suffered from clinical depression and anxiety myself, and I understand why it seemed so hard to beat it, because I remember how it made me feel. I was fortunate, in that my depression was treatable with talk therapy and Wellbutrin SR. It does, on occasion, rear its head again, but for the most part, I am much better than I once was. Secondly, I am a musician. No, I am not a “star”, and at this point in my life, I will probably never be a star… and frankly, I probably would not WANT to be a star, anyway. But I do make music, and I admire Naomi’s talents as a singer and songwriter. Thirdly, I come from similar, salt-of-the-earth, family stock. I didn’t know it when I started reading River of Time, but I could really relate to a lot of Naomi Judd’s comments about her family, and how people in her family made her feel. I’ll get more into that as this review progresses.

River of Time reads as if it comes straight from Naomi, but in fact, it was ghost written by author, Marcia Wilkie. I appreciated that this book really seemed to come from Naomi Judd’s heart, and I never noticed an intrusion by a professional writer. Some people felt that the book “jumped around a lot” and was “repetitive”. Personally, I didn’t find that an issue, but again, it did seem to me that this was a book coming from Naomi, rather than Marcia Wilkie. I see that at this writing, the book is offered on Kindle for $1.99, probably because ultimately, Naomi succumbed to her depression and committed suicide. I still think it’s well worth reading, for MANY reasons. So here goes…

Naomi Judd’s early years never suggested the great heights she would eventually reach…

Naomi Judd was born Diana Ellen Judd in Ashland, Kentucky on January 11, 1946. Naomi describes Ashland as a “grey”, ugly, industrial city. Her parents were poor, and not at all loving or demonstrative. Naomi made excellent grades in school and was a talented pianist, but her parents barely noticed. However, whenever she got any negative feedback from school officials, her father was quick to get out his belt and “whip” her. Naomi writes that she used to “borrow” her mother’s stiff rubber girdle when her father wanted to use the belt. She’d go to the bathroom, put on the girdle, and let him go to town, while she “hollered” like she was in pain. Apparently, he never caught on to Naomi’s ruse.

In this book, Naomi never refers to her original first name, or Wynonna’s. Wynonna was born Christina Claire Ciminella, although Naomi’s husband at the time of Wy’s birth was not her biological father. Wynonna was conceived when Naomi was seventeen years old, during Naomi’s very first sexual experience. She had a one night stand with a football player, she’d known in high school, a man named Charles Jordan. Naomi explains that she and Jordan got together for their tryst, because Naomi’s brother, Brian, was dying of leukemia. Naomi was very close to Brian, and she was feeling alone and vulnerable. As a lot of young girls do during their teen years, Naomi must have felt that connecting with a young man would make her feel loved and valued. Unfortunately, Charles Jordan abandoned Naomi, as soon as he found out about the pregnancy. Naomi quickly married Michael Ciminella, Ashley’s biological father, because Naomi’s mother, Polly, kicked her out of the family home.

Michael Ciminella’s family was sort of well off, and they lived a more comfortable lifestyle than Naomi’s family did. But Mrs. Ciminella was extremely obsessive about cleanliness and order. Naomi writes that when Wynonna was a baby, her mother-in-law had totally sanitized the whole house, and insisted that everyone wear masks and gloves before handling the baby. Even Naomi was expected to comply.

Naomi and Michael eventually moved to Los Angeles, California, where Ashley was born in April 1968. But the marriage didn’t last, and Naomi was soon raising her young girls by herself, with almost no help from Ciminella. After the divorce, Naomi reclaimed her maiden name and took the opportunity to change her first name, too. She enrolled in nursing school and eventually became a registered nurse. Unfortunately, when she was 22, Naomi was stalked by a violent, ex-con heroin addict, who beat and raped her. Still, somehow Naomi persevered and managed to launch her career in nursing. Meanwhile, she and Wynonna developed their musical chops, and eventually moved to Nashville, where they finally got their big break. Wynonna was eighteen years old when The Judds were on their way, but she and Ashley had still experienced a hardscrabble childhood, as their mother did everything she could to ensure their survival.

Naomi’s life heads south…

The Judds were wildly successful in the 1980s. They had fifteen #1 hit songs, and won dozens of music industry awards. Things seemed poised to continue in that direction, when Naomi started feeling ill. She went to a doctor, who told her that she had contracted Hepatitis C. She was told that her liver was “almost cirrhotic”, and that she had about three years to live. Fortunately, the medical establishment was wrong about her prognosis, but the diagnosis did force Naomi to retire in 1991. The Judds did a huge pay per view concert, which was a very successful event. Naomi eventually remarried in 1989, this time to Larry Strickland, a member of the Palmetto State Quartet, and former backup singer for Elvis Presley.

Although Naomi Judd had achieved great success in music, and also found the love of her life, she experienced extreme episodes of depression that left her feeling suicidal. So she did what wise people do when they feel sick. She saw a Nashville area psychiatrist. The psychiatrist did what a lot of psychiatrists do, when it comes to treating depression. He put her on antidepressants. She went through a huge list of them, and at times, she was never properly tapered off before the next drug was tried. Her doctor also prescribed the anti-anxiety medication, Klonopin. I took Klonopin myself at one time. Fortunately, it did nothing for me, and I quit taking it with ease. A lot of people get addicted to Klonopin, and other benzodiazepines. Naomi did, as did Stevie Nicks. Both women said that the drug destroys creativity and ambition.

The psychiatric drugs, and their lack of efficacy, along with the lack of talk therapy, made Naomi’s situation worse. She eventually landed in a psychiatric hospital at Vanderbilt University to be weaned off of the psychiatric drugs using IV phenobarbital. That was the first of several stays at mental health facilities, to include the psych ward at UCLA, as well as some posh rehab centers. She describes these experiences as if they were all horrifying– even the really plush, luxurious psych hospital was oppressive and terrifying. Eventually, she was able to get treatment from Dr. Jerrold Rosenbaum, a renowned psychiatrist at Mass General, in Boston. However, it was in Boston that she had electroconvulsive therapy (ECT), which used shock waves to improve. A lasting side effect from that treatment was the destruction of her ability to enjoy the taste of food. While ruining her sense of taste helped her lose weight, it also made one of her passions, cooking, a lot less enjoyable. She couldn’t even eat the treats she would make for others, because it all tasted “putrid”.

Still, Naomi Judd did find help when she discovered dialectical behavioral therapy (DBT), which is a technique discovered by psychologist, Marsha Linehan. Naomi explains how the technique helped to center her and improved her mental health. DBT is a technique that is often suggested for people who aren’t helped by Cognitive Behavioral Therapy (CBT), a well-known method for treating depression. As of 2016, Naomi did seem to be very edified by DBT. Unfortunately, we now know that the help she received from DBT was temporary. She never lost her urge to end her life.

Naomi also writes a lot about her family of origin. There was a lot of tragedy in her personal history, some of which came before she was even born. Some of her blood relatives were legitimately severely mentally ill, and more than a couple of folks were real criminals. Indeed, Naomi’s granddaughter, Grace Pauline Kelley, has done time in prison for drug offenses. As I read about Naomi’s grandmother, Edie Mae, who allegedly killed her husband, Howard (who had almost been killed by his own dad, when he was a child), I could definitely see a pattern.

Other people’s reactions to this book…

I took a look at the reviews on Amazon, to see what others thought of Naomi’s story about her mental illness. A lot of people wrote that they found River of Time “depressing”, and they described Naomi as engaging in a “pity party”. Some people wrote that they felt this book was a plea for attention.

Having now read River of Time, I guess I can understand why some people didn’t like the book. The truth is, Naomi’s life was depressing. She came from a family where there was a lot of mental illness and abuse. Naomi was sexually abused when she was very young, and she was not treated with love, consideration, or kindness when she was growing up. And so, it stands to reason that her true story is sad, and it should not be surprising to anyone that there are many depressing elements to Naomi’s life story. She had severe DEPRESSION, for God’s sake. What were people expecting? I do think that anyone who reads this book should NOT be expecting a chirpy book about how beautiful life is. That would be very disingenuous.

I mentioned earlier in this review that I can relate to Naomi’s story. My early years weren’t nearly as traumatic as hers were, by any stretch. But I grew up with an alcoholic father, as she did, and my father’s method of discipline was usually the corporal punishment kind. While I think my mom was more loving that Naomi’s was, she was somewhat cold and uninterested in me, especially when my dad was still alive. Mom is very different now, but when I was a kid, she was rather neglectful. And so, I could relate to Naomi’s yearning to have some acknowledgement from her parents, and other people in her family. I think that “pity party”, “whiny”, and “attention seeking” aspect of her writing that some people don’t like, was actually a facet of her illness. Her parents were, in part, responsible for the condition was was in… and make no mistake about it, it WAS a very real, physical, and mental illness that she couldn’t help. But at least she did TRY to get better, which is more than a lot of people can say. And she was fortunate enough to be able to consult some of the biggest and most successful people in the business. She was even friends with Maya Angelou.

I think the negative comments she got in Amazon reviews came from people who, bless their hearts, just don’t have a clue! They have not experienced depression themselves, so they don’t understand why Naomi, with all she had going for her in life, simply couldn’t snap out of it and be happy. They see her as selfish and self-indulgent, and don’t understand that she experienced real torment. Obviously, that torment was what led her to kill herself at age 76, even as she and Wynonna were about to be honored again. And no, she wasn’t the better singer in The Judds, but she was clearly a big part of the duo’s success. Wynonna was probably destined to be a star, but there’s no denying that her mom helped her on her way. I can understand why Naomi felt that she was left behind, and why that would be one of the many causes of her depression. On the other hand, she also accomplished a lot on her own, and somehow, those accomplishments evidently didn’t raise her opinion of herself, or her life.

Overall…

I’m glad I read River of Time. It is a sad book, and it does have the capability of being depressing, but to me, Naomi’s story felt authentic. I could relate so much to a lot of what she wrote. My heart went out to her, on more than a couple of occasions, and I even felt a little verklempt at times when I read this. I really wish that she could have conquered her demons, and enjoyed her life until its natural end. As we all know, that wasn’t to be. Depression CAN be deadly, though, and her story is a stark reminder of that verifiable fact. It’s easy for people to look at someone else’s life and think they have no reason to be sad, or to complain about anything. I would urge people not to make those kinds of judgments. When it comes down to it, you never know what kind of hell someone might be experiencing privately. Life is tough for most people… even famous, beautiful, talented, and rich people, like Naomi Judd was. I hope wherever her soul is now, she’s finally at peace.

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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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book reviews, family, healthcare

Repost: A review of Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s

I originally reviewed this book on September 2, 2017. It appears here “as/is”.

I have mentioned several times on this blog that I once had neighbors whose family was profoundly affected by Huntington’s Disease, a fatal genetic condition that robs the afflicted of their minds and bodies.  Last month, I purchased Therese Crutcher-Marin’s 2017 book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s.  I just finished reading the book today.

In the 1970s, author Therese Crutcher-Marin met her husband, John.  She fell in love with him and grew to love his three older sisters, Lora, Marcia, and Cindy.  John and his sisters had grown up without their mother; she was committed to a psychiatric hospital when they were young.  She later died, but it wasn’t until they were adults that they found out she’d had Huntington’s Disease.  Compounding the issue was the adult children’s father, Big John, who had never been much of a parent to his kids.  Big John had a second wife who was not particularly friendly to them, either. 

Every child born to a parent who has Huntington’s Disease has a fifty/fifty chance of inheriting the gene that causes the disease.  Every person who has the gene for Huntington’s Disease will eventually get the disease if he or she doesn’t die of something else.  It’s not possible to have the gene and simply be a carrier.

Therese loved John, but knowing that he may one day develop a very demanding disease that would eventually kill him at a young age was very difficult for her.  Eventually, the author decided that life is a crap shoot anyway.  She married John and they launched their careers and started a family, eventually having two children.  Meanwhile, each of John’s sisters developed Huntington’s Disease.

This book is mainly about Therese Crutcher-Marin’s experiences watching her beloved sisters-in-law getting sick and eventually dying.  The author’s husband opted not to be tested for the gene until after he was already past the age at which symptoms usually appear.  Fortunately, he did not have the gene, since he and the author had two children together.

For the most part, I found Watching Their Dance very informative and interesting.  It’s well-written and I admired how dedicated Therese Crutcher-Marin was to her husband’s family.  However, there were some parts of the book that I felt were a bit extraneous.  Sometimes the book read like a very newsy letter home; it included some information that didn’t necessarily seem relevant.  Therese does explain that she has problems with obsessive compulsive disorder.  She is a meticulous planner.  Perhaps that’s why this book seemed a little more detailed than it needed to be about things that weren’t pertinent.

I also feel that although Crutcher-Marin’s writing is mostly very functional and correct, her style isn’t particularly eloquent.  Some authors write effortlessly and colorfully.  Crutcher-Marin’s writing is serviceable, but not very artistic.  I got the sense that writing the story was hard work, although she did the work to high standards.

I did appreciate Crutcher-Marin’s candor about what it’s like to watch loved ones with Huntington’s Disease.  It’s a rare disease and a lot of people have never heard of it.  I happened to have seen it in person, so much of what she wrote about made sense to me.  Sadly, Huntington’s Disease has no treatment or cure.  The only thing that can be done is controlling the symptoms.  Moreover, it’s very difficult to find adequate care for people with Huntington’s Disease.  Those who have the disease do not die of it; instead, they die of complications arising from the disease process.  Many sufferers waste away because they can’t eat adequately or they develop an infection, like pneumonia.   

I can’t imagine how difficult it must have been for Therese, John, and their children to watch as Lora, Marcia, and Cindy each developed symptoms and eventually died.  Each of the sisters suffered in her own way.  One sister died quickly after developing a brain bleed after a blow to the head.  She had been taking Coumadin.  Another sister languished for years with Huntington’s Disease before she finally died.  The third sister developed the disease in her 40s, a late onset by most Huntington’s standards.  She managed to be independent and travel for some time before she, too, got very sick and died in her fifties.

I think Watching Their Dance is well worth reading, especially for those who know or love someone with Huntington’s Disease.  I am not aware of other books about what it’s like to be a caregiver to someone with HD, so this is a valuable book. 

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family

Polluted gene pools…

I’ve been watching with some dismay comments from people near and dear to me. I grew up among very politically conservative Christians in Virginia. My dad was a dyed in the wool Republican his whole life. As he got older, his views became more and more rigid. He’d listen to Rush Limbaugh religiously. He was also a fan of D. James Kennedy, a very conservative Presbyterian minister who had a very right wing religious program that aired every Sunday. I remember how D. James Kennedy railed against liberal politics, particularly anything having to do with abortion.

My dad was a believer.

And yet, as conservative as my dad was, and as racist as he sometimes was, he was probably among the least racist in our family. I think his years in the Air Force made him more open to people who weren’t just like him. Still, I remember a couple of very embarrassing incidents in restaurants in which my dad was egregiously racist toward the wait staff… the only excuse I can think of for him was that he was suffering from the beginnings of dementia.

I remember, on occasion, racist words used in my presence as I mingled with family members. I remember an aunt who told me about how she’d been accused of racism by a former student when she taught high school. At the time, I was surprised. Then, months later, I heard the same aunt casually drop the n bomb in front of me. I heard racist jokes from uncles and cousins, and we all laughed because they were “normal” in my family.

Then, in the mid 1990s, I joined the Peace Corps and left Virginia for Armenia, a country that was once part of the Soviet Union. I met different people from the United States and from other countries. I became exposed to people we used to collectively call “commies”, most of us not knowing the first thing about communism or socialism or the people who lived within those regimes.

Granted, the media and entertainment industries didn’t help. In the United States back in the 80s, Eastern Bloc and Soviet countries were routinely referred to as evil and oppressive. In fact, I specifically remember an episode of Fame, one of my favorite shows back in the day, about a pretty blonde Czech student who had come to New York to study for a month. The principal, Mr. Morloch, says “You’re in a free country now, little lady…” as if she should be thrilled to be in America, even though she’s followed by minders who make sure she doesn’t try to defect. Naturally, she falls in love with Chris Donlon, an American guy who tries to save her from communism.

My time in Armenia forever changed me. My world view was broadened significantly and it seemed like I couldn’t unring the bell. Now, when I am exposed to certain people in my family, I wonder how it is that we’re related. One of my cousins has been spewing some pretty offensive stuff lately. What’s shocking to me is that he’s still a young man. His father is my first cousin… and his grandfather was my uncle, a wonderful, kind, affectionate man. Yet somehow, I’m still sharing the same genes as a guy who seems to be trying desperately to minimize the horror of George Floyd’s public execution by cop last week and the ensuing protests…

Here are a few recent posts by him. He seems very much entrenched in the conservative mindset and despite his protests, is kind of subtly oozing racist proclivities:

He’s definitely not the only one in my family to display this attitude; he just happens to be the most recent one to do so publicly. In his defense, I know where it comes from. My family is from the Shenandoah Valley of Virginia, which is full of people who were steeped in old style values. Although most people in my family have either been in the military or went to college or both, I wouldn’t say most of them are travelers. They place a lot of stock on “family values” and protestantism. Most people in my family are Presbyterians, at least on my dad’s side. I don’t know nearly as much about my mom’s side, although I think they’re more liberal– that wouldn’t be hard, though. They’re good people, but they are very much stuck in this way of thinking, and they are not flexible.

I often wonder what they would be like if they spent time out of the southern United States among people who aren’t like them. Would they experience the same “awakening” I did? I’m not saying I’m the world’s most “woke” person, because I’m definitely not, but I can’t support Donald Trump as president. He’s inhumane, racist, and power hungry. I can’t blame George Floyd for being killed last week, even if he didn’t have a clean rap sheet. George Floyd allegedly tried to pass off a counterfeit twenty dollar bill. He didn’t deserve to be tortured and killed for that offense. I think the fact that he supposedly went to Minneapolis to “make a new start” is irrelevant. In fact, if anything, I think his decision to try to start anew is admirable.

There was a time when I had a similarly narrow view. I grew up in a small, conservative, predominantly white, southern town. Many of the people I knew when I was growing up are a lot like my relatives. They are good, decent, hardworking, salt of the earth type people. But they also steadfastly support Donald Trump and his ilk as world leaders. And when someone like George Floyd gets publicly executed by a cop, they try to excuse it.

I used to be much like that myself. What changed me was leaving that environment and being among other people with different perspectives. I’m glad I did this with my life, but now I can’t relate to my family anymore, because I am no longer with them politically or religiously. Some of my friends make me feel uncomfortable. I remember them as wonderful folks, but cringe as they proudly defend Trump and people like Derick Chauvin.

On the other hand, just last week, I defended Amy Cooper, and a lot of people would disagree with me about that. However, I don’t see that situation as the same as this one. I do think people should be able to call the police if they need help, even if other people don’t feel the call is justified. BUT– I feel even more strongly that the police should try their best to do their jobs without killing people. There is NO REASON George Floyd should be dead today. It doesn’t matter if he has a checkered past, and to be honest, I didn’t bother reading the link to see why Floyd needed a “new start” in Minneapolis. I don’t think it matters. What matters is the day he died. He was not a threat to anyone on that day, in that situation. He shouldn’t have been killed by a cop.

I have an uncle who, for years, used to send me racist spam in my email. He was always one of my favorite people. I love him very much, even today. But we haven’t spoken since early 2017, because he kept sending me racist/politically conservative Trump loving spam and I finally asked him to stop. I was relatively respectful at first, but then he called me a “liberal nutcase”. I proceeded to tell him off, including using the word “fuck”. He became enraged and sent me an angry response that was much like the spew I would hear from my dad when he was angry and drunk. It really brought back some horrible memories… and now, I don’t think I want to see my uncle again. I probably won’t see him, because he’s in his 80s and I have no plans to visit Virginia anytime soon. That makes me sad, because I still have some great memories of growing up with him as my uncle. But I can’t abide naked racism on display, especially since he’s not the kind of person with whom one can have a civilized discussion. He has a tendency to argue a point to the death and doesn’t consider the other side.

Fortunately for my family, I don’t think my empty seat at the Thanksgiving table is particularly missed anymore. Last year, when one of my beloved uncles had a stroke and later died, I found out about it on Facebook from a friend of my cousins. No one thought to tell me about it. Their excuse was that they told my sister to tell me. I used to feel very close to these people, but none of them thought enough of me to send me an email or a private message on Facebook. Maybe they see me as a defective member of the gene pool for turning out liberal…

I’m not the only one, by the way. I have another cousin who is a black sheep because he’s not only liberal, but gay. We often commiserate. Last time he went home to see his father– same guy who sent me racist videos and emails– he got into an argument with him about racism and homophobia and was turned out of the house in the middle of the night. This was in November in rural Virginia, so it wasn’t like he could go to a hotel with ease. So much for a loving and supportive family, right? Only if you think and act the way they do…

It occurs to me that this may be why I relate so well to ex Mormons. People who leave the LDS church, particularly when they are members of families with a long history and heritage in the church, are generally very brave individuals who can’t unring the bell. They can’t align with the church anymore, so they strike out on their own. They get ostracized and ridiculed and shunned… and they often turn out to be very interesting and empathetic people who can relate to others.

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