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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book reviews, celebrities

A review of Sorry Not Sorry: Dreams, Mistakes, and Growing Up, by Naya Rivera

A few months ago, I finally binge watched all of Glee. I was an early fan of the show, having watched the premiere for free on Apple iTunes in May 2009, when we lived in Germany the first time. I was quickly hooked on the quirky show about high school show choir and the musical theater geeks who are usually in them. I was not involved in music when I was in high school, but I did become musically active in college. I had lots of friends who were music and theater majors, and a couple who were Longwood’s first musical theater majors. Plus, both of my parents are/were musicians, as are a lot of my relatives. Add in my love of snarky, crude humor and you know I was a super fan… at least at first.

A series of life events caused me to quit being a regular viewer of Glee sometime around 2013. I think I quit watching around the time Cory Monteith overdosed and died. That was also about the time the show had kind of jumped the shark, as the original characters were obviously too old to be in high school and the jokes were getting a bit stale. The new people they brought in didn’t have the same chemistry, and to be honest, Lea Michele really annoys me, even though I know she’s extremely talented.

Naya Rivera’s death was tragic.

Anyway, I decided to watch Glee thanks to the pandemic and the fact that German Netflix has the whole series available… and I’m paying for Netflix and rarely watch it. Sometime during the period when I was watching Glee, I became aware of Naya Rivera’s 2016 book, Sorry Not Sorry: Dreams, Mistakes, and Growing Up. Naya Rivera, as you may know, tragically died last summer at the age of 33 when she and her then four-year-old son, Josey, went on an ill advised boating trip at Lake Piru, a manmade reservoir in Ventura County, California. Naya, who had been a good swimmer, evidently went swimming with Josey and, it’s theorized that she and her son got caught in a rip current. Josey wore a life jacket, but Naya did not, and evidently, the effort of saving her son by getting him back on their rented boat sapped all of Naya’s energy. She slipped under the water while her son looked on; he was found sleeping along on the boat. Naya was declared missing on July 8, 2020 and her dead body was found five days later.

Lately, Naya Rivera is back in the news, as her father, George Rivera, has publicly called out Glee creator Ryan Murphy for failing to set up a college fund for Josey, which Murphy had reportedly vowed to do when Naya suddenly passed away. She’s also in the news because she was left out of the “In Memoriam” segment at the recent Grammy Awards show, and many of her fans are reportedly outraged.

Naya tortured that poor M&M…

To be honest, I probably would not have read Sorry Not Sorry if I hadn’t recently binged on Glee episodes. Naya played Santana Lopez, who was originally a minor character who later took on a bigger role. Santana probably wasn’t my favorite character on Glee, but I did recognize her talent. And she got better as the show went on, while other characters became more irritating (ahem– Rachel Berry and Kurt Hummel). I hadn’t seen Naya’s other shows, either, so I wasn’t otherwise familiar with her work, except for on Glee and that creepy M&Ms ad she did in 2013. But as I watched her on Glee, I decided I liked her. She was a very talented woman and quite beautiful, with an interesting racial makeup that made her surprisingly versatile. And I guess I had a feeling her book would be a trip.

One of my favorite Santana scenes… next to the one where she comes out as a lesbian to her very conservative grandmother.
Heartbreaking… and definitely showed her talents as an actress.

I finally finished reading it this morning and I’m left with mixed feelings. Overall, I found Naya’s book entertaining and somewhat juicy. She comes off as a fun and loving person, who was both down to earth and earthy, like me. I enjoyed reading some of her anecdotes about being in show business, as well as some of the dishing she did on her Glee co-stars. Naya Rivera dated Mark Salling, who famously committed suicide in 2018 as he was facing sentencing for possession of child pornography. Apparently, he wasn’t a very good date, and she adds a snide quip or two about his legal issues, although the book was written before his suicide. She mentions Lea Michele a couple of times, as well as Cory Monteith, adding that filming his tribute on Glee was very difficult. She’s also candid about her upbringing and family life, as well as some of the people she dated and almost married. Being an old fart, I don’t know too much about Big Sean or Ariana Grande. But they’re both mentioned in the book with no shortage of sass and candor.

On the other hand, I wasn’t all that impressed with her writing, at least at first. At the beginning of the book, she repeatedly uses certain phrases, like “to this day”. I got the sense that she was writing the book as she spoke, which can make the writing seem personal, but can lead to overusing certain phrases and words to the point of annoyance. The writing seemed to get better as the book continued. I also wasn’t all that wild about the “sorry, not sorry” premise, as if she was offering life advice to her readers. Some of what she wrote was actually kind of wise, but then she’d add lists of things she was sorry, not sorry for. I guess I’m too old for that kind of a gimmick. On the other hand, I’m probably not in the target audience group for this book, anyway.

Wow… prophetic song. She did this for Cory Monteith’s memorial.

I found a lot of Naya Rivera’s comments very poignant. For example, at one point, she writes that she intends to live a very long time. This book was published in September 2016. No one could have known that Naya was going to be dead less than four years later. Given the way that she died– really through what seems to be negligence and overconfidence– it seems odd to be reading a book full of advice by her. But then, as I said, some of her advice is sound and makes sense, and there are times when she is surprisingly articulate and insightful. She did also pay her dues on her way up the showbiz ladder. She worked at Hooters for awhile, and when producers would praise her talent, she would occasionally mouth off at them, asking them why they never gave her the parts she wanted. Above all, she comes off as a good person with a lot of talent who worked very hard to get where she was. It really is a pity that she wasn’t able to enjoy the fruits of her hard work for longer than she did. I feel especially sad for her young son, who was the last person to see her alive. He’s going to have to live with that for the rest of his life.

Overall, I think Sorry Not Sorry is a fun read. In my younger days, I probably would have finished it in one or two sittings, but lately I tend to fall asleep when I read. Maybe it has to do with Arran making us take him outside in the middle of the night. And given that Naya Rivera is now deceased, maybe the book is less fun and more poignant than it was in 2016, but it’s a nice tribute to a young woman who was taken much too soon. I get a sense that this book is authentic and comes straight from Naya Rivera, rather than a ghost writer. It was not a bad thing to leave behind. Maybe I would have thought she was too young to write her life story in 2016– she repeatedly reminds readers that she’s almost thirty in the book. But as it turns out, her life wasn’t going to continue to the old age she expected. So I’m glad she wrote this book, and I’m pleased to have read it. I will recommend it to those who are similarly interested in Naya Rivera’s story.

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musings

Cancer claims so many special souls…

I’ve met a lot of people online that I’ve never seen face to face. For years, I wrote on product review site called Epinions.com. I met a lot of great people on that site and made about $12,000 reviewing stuff over the course of about eleven years. I was sad when Epinions crashed a few years ago, even though things had been going downhill for a long time and writing there was less fun than it once was. I had great memories of successful reviews, funny exchanges, great parties, and even the odd Internet drama.

In the wake of Epinions’ demise, I gained a bunch of Facebook friends in the form of ex Epinions writers. Several of those people have since died. Quite a few have had cancer, although I can think of one who died of extreme old age, like Granniemose (Virginia Kiraly). I still see her comments on old Facebook posts from years ago. They always make me smile, since she was in her 90s and still sharp as a tack.

The ones who have died of cancer have been quite young. The most recent death was that of Steve Murray, a gay academic who wrote wonderful reviews of books, movies, and music, and once gave me a hard time because I panned Shirley Jones’ sleazy life story. Steve was a fan of Ms. Jones’s and praised her acting and singing abilities. I have no doubt she is a very talented performer, but her book had excerpts about how she and her ex husband, Jack Cassidy, once went swinging with Joan Collins (I got an early copy that still had that bit in it– she was later court ordered to remove it). She also included commentary on the size of her sons’ and David Cassidy’s penises. Apparently, being well-endowed was a “gift” from Jack Cassidy. While I was kind of amused by the revelation, I still thought mentioning it in the book was kind of tacky and said so in my review. Steve thought I was too “hard” (heh heh) on Shirley for that and told me so in an annoying comment. Aside from that, we got along fine.

Steve died at the end of August. He had large B cell lymphoma. I read in his blog that he was going to exit by way of a physician assisted suicide. He’d had a last ditch bone marrow transplant and it failed, so there was nothing more to do than wait for the inevitable. He was gone at the end of August, like our sweet beagle, Zane was. Zane died of lymphoma, too.

Yesterday, I read the news that a much beloved Epinionator, Erin McCarty, is nearing the end of a long, arduous journey with ovarian cancer, which was discovered in November 2016. Erin was known as bilbopooh on Epinions. She’s a gifted writer who has a very sunny, sweet disposition, despite having a really rough time of things, especially in the past few years. A couple of years ago, she lost her friend, Beth (also on Epinions) to a brain tumor. She also lost her mother, Corinne, to ovarian cancer. Her husband, Will, died in July of this year, although I’m not sure what ended his life. I know he had a lot of health problems and spent a lot of time living in nursing homes. Erin had planned to have a memorial for Will, but was unable to make it happen before she was herself in the hospital.

Erin’s father, Ron, has been updating everyone on social media about his daughter’s situation. She’s only in her 30s, but has touched so many people. I’ve read so many heartfelt, loving tributes to her, even though she’s not yet gone. Yesterday, Erin’s dad wrote that they had planned to start chemotherapy, but she’s too ill to receive it now and likely would never again be well enough that chemo would do anything more than make her sicker. Erin’s dad says that she’s in the end stages of cancer, and may not be around for much longer. As difficult as this is for Erin, I can only imagine what her father is going through right now. That man has experienced so much loss in such a short amount of time. I’m offering prayers for Erin, but I’ve also said a few for Ron. He must be overwhelmed.

I remember I had a Facebook friend some time ago who knew Erin McCarty personally. His daughter had worked with me at a Presbyterian church camp in 1993. I hadn’t seen or communicated with his daughter, whose name is also Erin, since we finished working at the camp, but for awhile, her dad was Facebook friends with me, solely because Erin McCarty was a friend, too. He said I must be alright if I was friends with “wonderful” Erin McCarty. Of course, I don’t think Erin ever met an enemy. She seems to be a bright light in many people’s lives, which I know is a very rare quality in a person. I know Erin is a woman of strong Christian faith, which I’m sure is very comforting for her.

The capacity to touch people is so much greater now, since we have the Internet. I know I’ve affected people I don’t know and will never meet, simply due to things I’ve written. While I know not everyone is “blessed” by my writing, I also know some people have found value in it. When I’m feeling low or worthless, I remember those who have had good things to say about what I do. I remember people like Steve, Virginia, and Erin, who have healed, entertained, and educated so many people through writing. I don’t pretend to be nearly as special or talented as they are, or were… this is just my little corner of the Web. I know some people like coming here and return every day, even when I’m in a cranky mood. Of course, some come here because they want to trash me. Such is life. We’re all humans, and most of us aren’t as genuinely lovely, sunny, and awesome as Erin is. But when I find someone who is so genuinely wonderful, yet gets so sick with a horrible disease like cancer, it does tend to make me wonder if maybe there’s truth in the old saying, “only the good die young.”

Well… I don’t know what else I can write about this. Maybe reading the many tributes to Erin as she faces the end of her cancer journey is a valuable reminder to be a better person. And for those who don’t know her, I can help spread the light by writing about her on my blog. I don’t claim to be particularly enlightened or wise, but I do know something special when I see it. And I think Erin is extraordinarily special. I hope the time she has left is peaceful, serene, and as comfortable as possible.

Edited to add: Erin passed away on October 22, 2019 after one last Facebook post in which she encouraged those who wanted to meet her to make the trip “soon”. I am sure her loved ones are heartbroken, but I take some comfort in knowing that her pain and suffering is over… and maybe she is reunited with those who made the journey before her.

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