Category Archives: Books

Book Review: Cruel to Be Kind by Cathy Glass

A few weeks ago, I found out about a new Cathy Glass book on an E-mail list I’m part of. Most of the members of the list are big Cathy Glass fans, but I’d never read a book by her. I badly wanted to. Cruel to Be Kind is Glass’ latest foster care memoir. I finished reading it on Saturday. Here is my review. It contains slight spoilers.

Synopsis

Cruel To Be Kind is the true story of Max, aged 6. He is fostered by Cathy while his mother is in hospital with complications from type 2 diabetes. Fostering Max gets off to a bad start when his mother, Caz, complains and threatens Cathy even before Max has moved in. Cathy and her family are shocked when they first meet Max. But his social worker isn’t the only one in denial; his whole family are too.

My Review

It wasn’t clear to me from the synopsis what it is that shocks Cathy about Max. I need to disclose it to make this review at all meaningful, hence my spoiler alert. The shocking fact is that Max is morbidly obese. Whether childhood obesity is a form of child abuse, is a controversial issue at least in the Netherlands. As an obese person myself, I was at first a little like “What’s the problem?”. Clearly this is me still not being fully accepting of the health risks of my own obesity. Max though is not just obese – he weighs twice as much as he should at his young age.

As is said in the synopsis, Max’s family and social worker are in denial. His mother and sisters are all morbidly obese too and, even though Max’s mother Caz has type 2 diabetes, she at first refuses to admit Max needs to lose weight.

I at first thought this would be a rather boring story, but it isn’t. In fact, it has many layers. I really got to know Max, Caz and Max’s sisters as they struggle with the generational curse of child abuse and domestic violence. I loved how Cathy attempts to portray most people she interacted with as humans with their strengths and weaknesses. For example, at first Caz was portrayed like a demanding, hostile feeder. In the end, she warms up to Cathy and discloses the dark secrets behind her overeating.

Overall, I really liked this book and it totally has me hungry for similar books. The only thing I really didn’t like about the book, is its title. Max at the end uses the phrase that you have to be cruel to be kind sometimes as an expression of gratitude for Cathy’s having put him on a diet. This phrase and the use of the words “tough love” in the same statement, did trigger me a bit.

Book Details

Title: Cruel to Be Kind: Saying No Can Save a Child’s Life
Author: Cathy Glass
Publisher: HarperCollins Publishers
Publication Date: September 2017

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Book Review: A Boy Called Bat by Elana K. Arnold

Today, I was browsing Bookshare’s children’s book category. It used to be hard for me to browse books by category on the Bookshare website, because somehow my Internet browser would crash each time I tried. Today though, I succeeded. At first, books were automatically sorted by title and I didn’t know how to change the sort order. Eventually, I figured this out and sorted books by copyright date, because I like to read books that are relatively new. I found A Boy Called Bat by Elana K. Arnold on the first page, because the book was published in 2017 and the book title starts with a B according to Bookshare. Looking back, I must’ve come across this book a few times before when searching for the keyword “autism”. However, for whatever reason, I never decided to download, let alone read it. Now I did.

Synopsis

From acclaimed author Elana K. Arnold and with illustrations by Charles Santoso, A Boy Called Bat is the first book in a funny, heartfelt, and irresistible young middle grade series starring an unforgettable young boy on the autism spectrum.

For Bixby Alexander Tam (nicknamed Bat), life tends to be full of surprises—some of them good, some not so good. Today, though, is a good-surprise day. Bat’s mom, a veterinarian, has brought home a baby skunk, which she needs to take care of until she can hand him over to a wild-animal shelter.

But the minute Bat meets the kit, he knows they belong together. And he’s got one month to show his mom that a baby skunk might just make a pretty terrific pet.

Review

I adored Bat from almost the very beginning. He sounds a bit spoiled at first, but in a very relatable kind of way for me as an autistic person. For example, in the first chapter, Bat berates his sister Janie for having eaten the last vanilla yogurt, because it’s all he likes. I can tell though that Bat is really kind-hearted. Janie on the other hand sounds like a bossy big sister. I could see some things in her that reminded me of my own sister when we were growing up. Though she is my younger sister, she also had some “big sister complex” due to interacting with me. In the end though, I got to like Janie too. In fact, there are no mean characters in this book. The only negative about the characters I found is that all except for Bat are pretty flat. You get to see Bat’s perspecitve only.

I liked the way the story progresses. I must say here that I hadn’t read the summary before downloading the book so only knew the book is about a little boy with autism. Normally, I badly want to know what a book is about, but this time, I liked not knowing. The book follows a pretty predictable story line, but still there are some cool surprises in it too. It truly is a heartfelt little read. I liked the fact that the chapters are short, so even though there are 26 chapters, I, a slow reader, could finish the book within an afternoon.

As for the portrayal of Bat as an autistic character, some things are no doubt stereotypical. In this light, it’s a positive that we get to follow Bat’s perspective only. There is absolutely no judgment of Bat’s oddness except sometimes from Janie. Then again, Bat thinks Janie is weird too. Don’t all siblings? I definitely related to many of Bat’s idiosyncrasies.

This is not an inspirational read or even much of an informaitonal book about autism. In fact, I did not see the word “autism” in the book. This is mostly just a book about a boy who cares a lot about animals and wants to keep the baby skunk his mother found, because they bond so well. Of course, it’s a stereotype that autistic people are tuned into animals. However, I didn’t get the idea from this book that it was the author’s intention to perpetuate this stereotype. Don”t most kids love animals, after all?

Rating: five stars.

Book Details

Title: A Boy Called Bat
Author: Elana K. Arnold
Illustrator: Charles Santoso
Publisher: Walden Pond Press (an imprint of HarperCollins)
Publication Date: March 2017

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Book Review: Handle With Care by Jodi Picoult

Last June, I got a Bookshare membership after delaying it for years. The proof of disability form had literally been sitting in my drawer since like 2010. Granted, back then people who weren’t U.S. residents or citizens had only very limited access to books, so it was hardly worth it. Since the Marrakesh Treaty though, international distribution of books for the purposes of access for visually impaired people is much easier. Don’t ask me about the technicalities. I’m just happy that most books are now available to me.

I read My Sister’s Keeper by Jodi Picoult in like 2005, when I briefly used the UK’s National Library for the Blind. I was no longer able to use their services after some books were lost on the way back. Yes, they at least used to distribute Braille books to international members only. Anyway, since reading My Sister’s Keeper, I badly wanted to read more by Picoult. Partiuclarly, I wanted to read Handle With Care from the moment it came out. Now, with my Bookshare membership, I got a chance to read it. Because I started reading many other books too, I didn’t finish Handle With Care till yesterday. Here is my review of it. It contains spoilers!

Synopsis

When Willow is born with severe osteogenesis imperfecta, her parents are devastated–she will suffer hundreds of broken bones as she grows, a lifetime of pain. Every expectant parent will tell you that they don’t want a perfect baby, just a healthy one. Charlotte and Sean O’Keefe would have asked for a healthy baby, too, if they’d been given the choice. Instead, their lives are made up of sleepless nights, mounting bills, the pitying stares of “luckier” parents, and maybe worst of all, the what-ifs. What if their child had been born healthy? But it’s all worth it because Willow is, funny as it seems, perfect. She’s smart as a whip, on her way to being as pretty as her mother, kind, brave, and for a five-year-old an unexpectedly deep source of wisdom. Willow is Willow, in sickness and in health.

Everything changes, though, after a series of events forces Charlotte and her husband to confront the most serious what-ifs of all. What if Charlotte had known earlier of Willow’s illness? What if things could have been different? What if their beloved Willow had never been born? To do Willow justice, Charlotte must ask herself these questions and one more. What constitutes a valuable life?

Review

The book, like My Sister’s Keeper is written from every main character’s viewpoint alternatingly except for Willow’s. Throughout the book, the main characters tell the story as if addressed to Willow. In other words, she is referred to as “you” all the time. I like this. Even though Willow doesn’t get a voice till the near end of the book, the other main charactes do give the reader a great insight into her character.

All main characters are very well-formed. Because of this, a lot of other stories are interwoven with the main story of the wrongful birth lawsuit that Charlotte files against her obstetrician. For example, Piper, Charlotte’s obstetrician, is also her best friend. Marin, Charlotte’s lawyer, is dealing with the search for her birth mother. And Amelia, Willow’s sister, struggles with bulimia and self-injury.

Because each charater gives their own viewpoint, both sides of the wrongful birth lawsuit are equally described. Though I hoped most of the time that Charlotte would win, I also symapthized with the other party. I wasn’t sure of the outcome until it was spelled out in the book.

The fact that the book has a lot of twists and turns, so that you’re never sure of how it ends, is mostly a good thing. It ends up being a very bad thing though as I read the last few pages. The book ends with Willow dying, which in my opinion only spoiled the entire book. I mean, there was some point to Anna dying in My Sister’s Keeper. I didn’t see that this time. As such, the book definitely deserved a five-star rating before I’d completely finished it. Once I’d read those last few pages, not so.

Book Details

Title: Handle With Care
Author: Jodi Picoult
Publisher: Atria Books
Publication Date: March 2009

Book Review: Rules for 50/50 Chances by Kate McGovern

Last January, when I’d just finished a few other books, I decided to look around for another young adult novel to read that’s about a subject I’m interested in. I stumbled upon Rules for 50/50 Chances by Kate McGovern. The book sounded interesting enough, so I bought it and started reading. Due to some other interests demanding their time from me, I didn’t finish it till yesterday. This review may contain spoilers.

Synopsis

Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she’s going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington’s disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family’s genetic curse, Rose is skeptical about pursuing anything that presumes she’ll live to be a healthy adult-including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

Review

Pretty early in the book, I found out who the boy from the similarly flawed genetic pool mentioned in the synopsis is. His mother and sisters have sickle cell disease, but he doesn’t carry “the gene”. There’s where McGovern puts a glaringly obvious medical inaccuracy in the book, that is, that sickle cell is a dominantly inherited disease. There is no mention of the boy’s father being a carrier of the disease and sickle cell is compared to recessive diseases at least once. For those who don’t know, sickle cell is a recessive disease, meaning you need two copies of the gene to get the disease. I happen to know because I once read that people who carry one copy of the gene don’t get sickle cell disease and have the added luck of not getting sick when infected with malaria. That’s why sickle cell is more common among Black people than among Whites or other races. Yes, I did look it up to be sure. This huge medical inaccuracy spoils the entire book for me. That’s probably me though, being autistic and having a special interest in medicne.

Now that we got this out of the way, I have to say the book is otherwise quite good. It is a little predictable at times, but there are still enough twists and turns for the book to remain interesting. The author goes into detail sometimes, which I like – but which is also why said medical inaccuracy annoys me. I love getting to know the main character really well. Rose is not just a girl whose mother has Huntington’s. She’s a true round character. I also got a glimpse into the world of Huntington’s (obviously), sickle cell, ballet, and as a added bonus, the California zephyr train ride. Love trains.

Book Details

Title: Rules for 50/50 Chances
Author: Kate McGovern
Publisher: Farrar, Straus and Giroux (BYR)
Publication Date: November 2015

Book Review: Believarexic by J.J. Johnson

I have published a few posts that were inspired by my reading of the book Believarexic by J.J. Johnson already. I didn’t share many opinions on the book itself though. Early this morning, I finished the book, so I’d like to post a review. This review contains some spoilers.

Synopsis

Fifteen-year-old Jennifer has to force her family to admit she needs help for her eating disorder. But when her parents sign her into the Samuel Tuke Center,
she knows it’s a terrible mistake. The facility’s locked doors, cynical nurses, and punitive rules are a far cry from the peaceful, supportive environment
she’d imagined. In order to be discharged, Jennifer must make her way through the strict treatment program – as well as harrowing accusations, confusing half-truths, and startling insights. She is forced to examine her relationships, both inside and outside the hospital. She must relearn who to trust, and decide for herself
what “healthy” really means.

Punctuated by dark humor, gritty realism, and profound moments of self-discovery, Believarexic is a stereotype-defying exploration of belief and human connection.

Review

This book is an autobiographical novel. The author describes this quite poignantly at the end of the book as “true make-believe”. What this means is that the author did really get inpatient treatment for her eating disorder in 1988 and 1989, but the details and characters may’ve been changed or simplified. I haven’t yet checked the bonus material, so I cannot be sure whether some of the pretty intriguing events in the book did really happen. For instance, one of Jennifer’s fellow patients is signed out by her parents because they don’t believe the program is working. They decide instead to take her to an orthodontist to have her mouth wired shut. Even though this book takes place in the dark ages of the 1980s, I find it hard to believe such a procedure would be legal even then. I do still see the stark contrast between psychiatric treatment then versus now.

Sometimes, I find that characters have been oversimplified in terms of them being either good or bad. Dr. Prakash, Jennifer’s psychiatrist, is nice from the beginning to end, whereas nurse Sheryl aka Ratched is bitchy and controling throughout the book. Still, some characters make quite a transition through the book, and there are incredible twists and turns.

The book starts out a bit triggering with for example the hierarchy of eating disorders being quite extreme. Nonetheless, this book is clearly pro-recovery. At the end of the book, the author encourages people who even have an inkling of an idea that they might have an eating disorder to seek help. As may’ve become clear through some of my previous posts inspired by this book, Belieivarexic led me to some interesting insights.

Book Details

Title: Believarexic
Author: J.J. Johnson
PUlbisher: Peachtree Publishers (eBook by Open Road Media)
Publication Date: October 2015

For more information on the book and its author and for resources for people with eating disorders, go to Believarexic.com.

Book Review: Unspeakable by Abbie Rushton

Yay! I reached at least one of my goals for this month. I finished not just one, but two books I’d started reading earlier in the year. Already in January, before the book was published (or at least before the eBook was), I found out about Unspeakable by Abbie Rushton and decided I wanted to read it. Like with Girl in Glass, other things that seemed more interesting came in the way, so I didn’t finish the book till a few days ago.

Synopsis

Megan doesn’t speak. She hasn’t spoken in months. Pushing away the people she cares about is just a small price to pay. Because there are things locked inside Megan’s head – things that are screaming to
be heard – that she cannot, must not, let out. Then Jasmine starts at school: bubbly, beautiful, talkative Jasmine. And for reasons Megan can’t quite understand, life starts to look a bit brighter. Megan would love to speak again, and it seems like Jasmine might be the answer. But if she finds her voice, will she lose everything else?

My Review

This is a fascinating book and it doesn’t go as I’d expected it to go. When I first started reading this book, I thought it’d shed light on selective mutism, in which a peson (usually a child) is unable to speak because of severe social anxiety. Though technically Megan might meet the definition of selective mutism, much more is behind her silence than social anxiety. When reading the first few chapters, I was bored easily, because I had no way of making sense of the story. When I read on, however, this boredom turned into curiosity, then suspense and eventually I was completely captivated. The book has some fascinating twists and turns and some thrilling cliff-hanges, some almost literal. Once I got through the first few chapters, the story kept me thrilled until the very last page. That’s a rare occurrence with the type of fiction I usually read. With this book, Abbie Rushton tells a great story on friendship, love and crime. For those who, like me, are pretty faint-hearted, I’d like to disclose that the story ends on a good note. I can’t wait to read Rushton’s next book, which will be out in the spring of 2016.

Book Details

Title: Unspeakable
Author: Abbie Rushton
Publisher: Little, Brown Book Group
Publication Date: February 2015

Book Review: Girl in Glass by Deanna Fei

A few months ago, I read on a preemie parent blog about the book Girl in Glass by Deanna Fei. I bought the book, but bought a few others after that one that I thought would be more interesting. As a result, I only finished this book today.

Synopsis

Deanna Fei was just five-and-a-half months pregnant when she inexplicably went into labor. Minutes later, she met her tiny baby who clung to life support inside a glass box. Fei was forced to confront terrifying questions: How to be the mother of a child she could lose at any moment. Whether her daughter
would survive another day–and whether she should. But as she watched her daughter fight for her life, Fei discovered the power of the mother-child bond at its most elemental.

A year after she brought her daughter home from the hospital, the CEO of AOL – her husband’s employer – blamed the beautiful, miraculously healthy little
girl for a cut in employee benefits and attached a price tag to her life, using a phrase, “distressed babies,” that set off a national firestorm.

Girl in Glass is the riveting story of one child’s harrowing journey and a powerful distillation of parenthood. With incandescent prose and an unflinching eye, Fei explores the value of a human life: from the spreadsheets wielded by cost-cutting executives to the insidious notions of risk surrounding modern
pregnancy; from the wondrous history of medical innovation in the care of premature infants to contemporary analyses of what their lives are worth; and finally, to the depths of her own struggle to make sense of her daughter’s arrival in the world. Above all, Girl in Glass is a luminous testament to how love takes hold when a birth defies our fundamental beliefs about how life is supposed to begin.

Review

As regular readers of my blog know, I was a preemie. My parents were concerned with my quality of life, asking some of the same questions Fei asks the doctors and herself. I cringed sometimes as I read Fei’s repetitive worrying about her daughter Mila’s health issues and their possible consequences, which sometimes led her to question whether she should be alive. At one point, Fei tells the doctors that she and her husband are not religious and do not have ethical issues with letting their child go if she faces severe disability. At times, I had a hard time reading on, because I was reminded of some of my interpretations of my parents’ reasoning on quality of life. For example, when Mila has a brain bleed, Fei repeats this over and over again: “What about her brain?”

Once Tim Armstrong, the CEO of AOL, uses Fei’s daughter as an excuse to cut employee benefits, Fei seems still not entirely accustomed to the idea that Mila is not just “generally okay” (Armstrong’s words) but is a blessing. Now I personally don’t like such terms to describe human beings either, but it seems that Fei is still a bit uncertain whether Mila should have been kept alive. This could be her post-traumatic guilt though.

However, Fei stands up for her daughter’s right to medical care. She investigates the issues surrounding health insurance and the right to medical care in the United States. Fei claims that, in every other developed country, the question would not be raised whether Mila is worth the alleged $1 million. Of course, I was reminded of the guidelines restricting treatment of premature babies to those born past 25 weeks gestation in the Netherlands. No employer may decide that certain babies aren’t worth the cost of treatment, but that doesn’t mean no such decisions are made. Similarly, while in the Netherlands employers don’t have access to health information (although they might if you buy your mandatory health insurance through an employer collective), governments do.

Fei cites a few court cases in which quality of life and the right to medical care were at stake. Unfortunately, she concludes that “obviously”, Sidney Miller, who was a preemie and now has multiple severe disabilities and is unable to walk, talk or feed herself, crosses the line of good enough quality of life. I disagree, but that’s a topic for another post. Fei uses her and other cases to discuss the idea that Mila or any other preemie should have to prove their worth. This idea, which is central to Armstrong’s reasoning and to Mila’s care, evoked a lot of emotion in me.

In general, I found Girl in Glass evoked the full spectrum of emotions in me. Mostly though, it evoked sadness and anger. Reading this book was in a way therapeutic, because Fei articulates the sentiments so well that I’ve been feeling for a long time. She also does a great job of investigating all the issues surrounding the health care system when it comes to premature babies.

Bok Details

Title: Girl in Glass: How My “Distressed Baby” Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
Author: Deanna Fei
Publisher: Bloomsbury Publishing
Publication Date: July 2015

Book Review: Cook County ICU by Cory Franklin

I am a big lover of medical memoirs and stories from doctors and other health care workers. A few weeks ago, I was browsing an eBook store I don’t normally go to, because Kobo has become harder to search and browse. I discovered Cook County ICU by Cory Franklin in the medical biographies and memoirs section. Because that eBook store doesn’t accept PayPal, I bought the book at Kobo anyway. I knew I wouldn’t be able to review it till today, because of the #Write31Days series, and I really had to keep myself from speeding through it. Of course, if I’d finished the book earlier, I could’ve scheduled my review, but in a way I was trying to keep myself from finishing the book too soon and getting bored afterwards. I just finished the book tonight.

Synopsis

An inside look at one of the nation’s most famous public hospitals, Cook County, as seen through the eyes of its longtime Director of Intensive Care, Dr. Cory Franklin.

 

Filled with stories of strange medical cases and unforgettable patients culled from a thirty-year career in medicine, Cook County ICU offers readers a peek into the inner workings of a hospital. Author Dr. Cory Franklin, who headed the hospital’s intensive care unit from the 1970s through the 1990s, shares his most unique and bizarre experiences, including the deadly Chicago heat wave of 1995, treating some of the first AIDS patients in the country before
the disease was diagnosed, the nurse with rare Munchausen syndrome, the first surviving ricin victim, and the famous professor whose Parkinson’s disease hid the effects of the wrong medication. Surprising, darkly humorous, heartwarming, and sometimes tragic, these stories provide a big-picture look at how the practice of medicine has changed over the years, making it an enjoyable read for patients, doctors, and anyone with an interest in medicine.

Review

Like the synopsis says, the stories in the book are mostly fascinating. I loved learning about the first surviving ricin poisoning victim and the suicidal biochemist. These obviously have got to be the first stories I mention, because I’m fascinated with (and deathly afraid of) poison. I grinned at the duke of Spain being mistaken for an alcoholic and the resident calling for a stat (as soon as possible) dermatology consult because “the rash might be gone tomorrow”. I almost cried with pity for the medical student asking a “stupid” question in a conference with some of the area’s top doctors (which turned out to be a really smart question later on). Most times, I felt eager to find out how each story unfolded. Even if the title explained some things already, as in the chapter on the disease that turned out to be AIDS, I found there were fascinating turns in the stories.

Dr. Franklin seems to intend his book to be a testament to the old-fashioned doctor-patient relationship. He ends the book by recounting some recent changes in the practice of medicine, like the change from covenant to contract in the doctor-patient relatiosnhip and the increased part money plays. He sounds a bit bitter at this point, because he considers the changes mostly negative but says we cannot go back. I have to mostly agree with him here, even though I am mostly a 21st-century patient so don’t know the era in which Dr. Franklin practised. Some things have improved. Like, when AIDS wasn’t known yet, doctors and nurses didn’t wear gloves when drawing blood, and Dr. Franklin is terribly lucky that none of his team treating the early patients were infected. In this sense, protocols help. That being said, things can go too far, and they probably have.

Despite HIPAA and similar laws, I know even today there are practitioners of “romantic medicine”, as 20th-century neurologist A.R. Lurija originally called it and as continued in the English language by Oliver Sacks. What I mean is, there are still doctors who will listen to their patients’ stories rather than just their immediate health concerns. That doesn’t mean all will publish books on their patients, but I’m sure some will. In this sense, medicine as a human-centered profession is not doomed. Cook County ICU is a great example of a fascinating book of interesting medical cases brought to life.

Book Details

Title: Cook County ICU: 30 Years of Unforgettable Patients and Odd Cases
Author: Cory Franklin
Publisher: Chicago Review Press
Publication Date: September 2015

Mami 2 Five

Book Review: Suffering the Silence by Allie Cashel

Last week, I read in a Dutch women’s magazine about the website Suffering the Silence, created by Allie Cashel and her friend Erica. Allie also wrote a book by the same title, which was published just weeks before. I immediately felt an urge to buy the book and did so on Friday. I just finished it and wanted to share a review.

Suffering the Silence describes Cashel’s own and other people’s struggles with what they see as chronic Lyme disease, but what is deemed a “medically unexplained” syndrome by most mainstream physicians. Allie Cashel was first diagnosed with Lyme disease in 1998 and has been suffering on and off ever since. While she originally found Dr. Bernard Raxlen, a Lyme-literate doctor as they’re called within the chronic Lyme community, other world-renowned doctors denied her infectious disease.

The book consists of four parts. In the first part, Cashel describes her own struggles with Lyme disease, her symptoms and her fight for recogntiion, as well as her self-doubt after famous doctors in Boston deny she is physically ill. She also provides an overview of the Lyme controversy.

In the second part, Cashel broadens the reader’s perspective by allowing other chronic Lyme sufferers to speak out. Many had a hard time getting properly diagnosed and treated for Lyme and its almost inevitable co-infections. Some found relief from long-term antibiotic treatments, while others found they were helped with other, even more non-conventional treatmets, and some found they could not be helped at all.

In part three, Cashel interviews doctors and scientists on all sides of the chronic Lyme controversy. She interviews one of the contributors to the Infectious Disease Society of America (IDSA) guidelines on Lyme dsease, which deny that chronc Lyme disease exists. She also interviews two scientists working on the prvention of Lyme, as well as Dr. Richard Horowitz, a physician who uses an alternative, multi-systemic model of infectious disease. It was at this point that, for the first time, I cringed, because Dr. Horowitz linked Lyme to the autism “epidemic”. While I am not completely opposed to alternative views of autism, it seemd Dr. Horowitz’s reasoning was a bit off.

Part four describes the ways in which people strive to reduce the stigma of Lyme disease and chronic illness in general, as well as the effect these conditions have on a person’s identity. I recognized a lot here, as a person who firmly embraces her identity as a multiply-disabled person. For once, this was seen as understandable, necessary for advocacy even. I liked the affirmation Cashel designed for herself, embracing her status as a Lyme disease sufferer and affirming that other people believed her about this. As a person whose family does not believe in her autism and anything that cannot be seen, and opposes the identification with disabilities, I liked this.

The book is both a captivating memoir and collection of patient stories, and an intriguing work of research into the chronic Lyme disease controversy. I loved it.

Book Details

Title: Suffering the Silence: Chronic Lyme Disease in an Age of Denial
Author: Allie Cashel
Publisher: North Atlantic Books
Date Published: September 2015

Everyday Gyaan

Brilliant blog posts on HonestMum.com

Book Review: Beyond Magenta by Susan Kuklin

As I said when I wrote my summer reading list, I have been wanting to read Beyond Magenta by Susan Kuklin (2014) ever since I discovered it. I finally got down to finishing it this week.

Beyond Magenta is a series of interviews with transgender or genderqueer teens. There are interviews with two trans girls, two trans guys and two people who identify as something inbetween male and female (genderqueer, genderfluid or as one of them calls it, genderfuck). One of the genderqueer teens is also intersex. They have polycystic ovary syndrome, which I until reading their story didn’t know is an intersex condition, since most people with PCOS are thought of as female.

I think I know quite a bit about gender diversity for someone who is thought of as and identifies as female (cisgender). Even so, I learned some new things about trans and genderqueer issues, some of which I now see as quite basic. For example, as is apparent in many of the stories, gender identity has little to do with sexual orientation. It only has to do with it in that many trans people start out identifying as gay or lesbian before they realize they’re truly straight but trans. It is interesting in this sense that many of the people interviewd found that their parents or friends were okay with them being gay or lesbian, but not with them being trans.

The teens interviewed in this book faced a variety of reactions to their gender identity. Some were also totally cool with themselves from the start while others faced significant depression. Of course, in order to want to be interviewed for a book on trans issues, even anonymously, you need to have come to terms with your gender identity to an extent. For example, Mariah, who insisted on being pseudonymized, calls herself not a success story, but she still appears quite confident. This could of course be a façade.

Overall, I liked learning about teens’ trans and genderqueer experiences through Beyond Magenta. The book wasn’t written in some kind of inspirational, oh-look-at-that kind of way, or at least I didn’t perceive it as such. Kuklin did a nice job allowing each teen to express themselves as they wanted.