Category Archives: Books

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

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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.

On My Summer Reading List

As a child, I hated reading. I was required to read at school and sometimes at home, but at least during summer vacation, the reading required by my teachers was gone for a few months. I wasn’t one to join summer reading clubs and maybe finished my library’s reading program – five books in three months or so – once.

It was, however, during the summer of 2000 that my love for reading took off. I discovered Caja Cazemier, a Dutch juvenile fiction writer, and read many of her books during the next two years. Since I went to a high level high school, however, we were required to read real adult literature from ninth grade on. I hated it! Still in all honesty, I’ve not read many works of adult fiction. Give me non-fiction, memoris and juvenile fiction instead.

I didn’t read much during the years following my high school graduation in 2005. Few books at least – I obviously did read blogs and magazines. In 2014, however, I rediscovered a love of reading when I learned how to work eBooks. This summer, I’m going to really make time for reading.

Since summer reading is the topic on the Spin Cycle this week, I browsed Kobo for a few books I want to read. Here goes.

1. Tressa – The 12-Year-Old Mum: My True Story by Tressa Middleton and Katy Weitz. I admit it, I love inspirational books about people who overcame adversity. Some people see this as bad, and I understand why, but well, yeah. Tressa Middleton became Britain’s youngest mother in 2006 at the age of twelve. The truth is she was raped and made pregnant by her brother, but she hid this truth for years. This must have been an awful experience, but, according to the cover, Tressa overcame this trauma. I just found this book today and really look forward to reading Tressa’s true story.

2. Beyond Magenta by Susan Kuklin. Since finally favoring my own opinions over others’, I can now admit I support transgender people and their rights. On the blog I kept in like 2010, I often used to call out transphobia and homophobia, but this has gone on the backburner since I wanted to belong with the Christian community. Being cisgender and straight, privilege affords me this luxury. Beyond Magenta is a book of stories from transgender teens. It was published in early 2014 and I’ve wanted to read it ever since. I can’t promise it won’t have any inspirational qualities to me, but I mostly like to educate myself about trans people’s lives. (Of course, if you’ve read about one trans person, you’ve read about one trans person.) I won’t be able to see the photographs the cover mentions, so I hope I won’t be missing out on them.

3. The Beauty Myth by Naomi Wolf. This book is the June 2015 non-fiction read in the F-Word community on GoodReads. In this book, Wolf exposes the hidden body negativity and sexism of modern beauty ideals and the beauty industry. As a fat person who doesn’t conform to beauty norms (eg. I don’t usually wear make-u), I look forward to reading what Wolf has to say.

What will you be reading this summer? Any other recommendations for on my reading list?

Five Inspirational Books That I Love

This week, one of Mama’s Losin’ It’s writing prompts is “book review”. Also, a few days ago, the Blog Everyday in May prompt was “five books I love”. I don’t participate in Blog Eveyrday in May, since I only discovered it yesterday, but I love to find writing prompts. Therefore, I thought I’d combine the two and list five books I love. As it turns out, all are inspirational books.

1. Preemie Voices by Saroj Saigal (2014). This book is a collection of letters from former preemies, born between 1977 and 1982, that describe their lives now and give hope to parents of today’s premature babies and children. Many years ago, I believe Bill Silverman wrote a book of stories from former preemies titled Small Victories. I could unfortunately not get my hands on this book and am so glad I got my hands on Preemie Voices. It is so validating to know that I’m not alone on this preemie journey, even though it’s a bit annoying that the target audience is parents of today’s preemies.

2. Miracle Survivors by Tami Boehmer (2014). This is Boehmer’s second book of stories from long-term survivors who were said to have incurable cancer. I didn’t read her other book, but I think I’m going to. In Miracle Survivors Boehmer starts by listing characteristics she’s found long-term survivors of thought-to-be-incurable cancer have in common. Each contributor then tells his or her story and ends it with life lessons they’ve learned through their journey with or their overcoming of cancer. Though some people use alternative medicine and claim to have been cured by it, this is not prominently promoted. Above all, the survivors promote being on top of your own care and advocating for yourself. I feel this is an importnat message even to those who are in the healthcare system for other reasons.

3. Angels at Our Table, 2nd edition by Ann Breen (2012). This is a book of stories from parents of children (and some adults) with Williams Syndrome. People with Williams Syndrome usually have an intellectual disability and may have many health problems, but they also commonly have a very sociable personality and cute facial features. Though many families struggled with getting their children properly diagnosed and treated, particularly back when Ann Breen’s daughter was young in the 1980s, the message in the book is one of appreciation. The importance of support is also highlighted, as Ann Breen founded the Williams Syndrome Association of Ireland. I for one happen to actually like inspirational books about people wiht disabilities, so this one is a good one for me.

4. Real Families, Real Stories by Stephanie Sumulong (2014). This is a book of stories from family members of children (and again some adults) with Down Syndrome. The stories are very short, which is a bit disappointing, because i don’t get to get a deeper understanding of these families’ lives. The intention of the book is to celebrate people with Down Syndrome. For this reason, it is also sad that no adults with Down Syndrome were interviewed. However, the stories do cover many aspects of families’ lives with Down Syndrome, including prenatal diagnosis, adoption, the heart defects that commonly occur in Down Syndrome, and sibling perspectives.

5. Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries by Amy Newmark, Carolyn Roy-Bornstein and Lee Woodruff (2014). I have not yet finished this book, but so far, it seems wonderful. Having myself acquired possible brain damage shortly after birth, I find the stories of brain injury survivors somewhat relatable, though of course I did not have a life prior to brain damage. A few months ago, I read a Dutch book of stories from people who had invisible disabilities due to brain injury and I loved it. Being Chicken Soup for the Soul, the stories of course have been selected for being inspirational, but so far, it looks like many aspects of life with TBI are covered.

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Book Review: A Different Me by Deborah Blumenthal

A few weeks ago, I was given a promo code on Kobo for having been a customer for a year. I searched for interesting juvenile fiction, and came across A Different Me by Deborah Blumenthal (Albert Whitman & Company, 2014). The synopsis sounded interesting, so I decided to buy the book, and finished it within a week.

Synopsis

Allie Johnston’s secret wish since the day she was twelve is to have her nose done. But she hasn’t told anyone – not her parents, or even her best friend, Jen. But when she starts visiting a plastic surgery discussion board on the Web, she finds people who get her, for the first time in her life. Her new friends, including two girls her age with vastly different backgrounds who share her obsession with changing their faces—but for very different reasons. A sharply written, insightful book about learning to be happy with who we are.

My Review

For the most part, I liked this book. Most characters are really formed, though on the surface they may come across a bit superficial. That’s the whole point of the book I believe: even if a person may seem shallow, often you don’t see what’sinside of their minds unless you really attempt to get to know them. For example, Amber, the most goodlooking girl in the school, has a hidden life of pain that Allie doesn’t get to find out until she looks beyond Amber’s outward appearance.

The character of Allie herself seems to have deliberately been developed to seem a bit boring. Unlike Amber and some other characters, she doesn’t have much drama in her life. All she has is a screwed body image. This again serves the point of the book well: Allie may have a bump on her nose, but overall she has a pretty good life.

The book’s ending in terms of Allie’s nose surgery (which she ends up canceling at the last moment) is quite predictable. However, it’s not whether she has surgery that makes this book interesting, but the mental processes leading up to her decision. In this sense, I was more interested in learning about the other characters than I was in learning about Allie. After all, it’s the other characters who teach Allie that it’s not her looks that make her who she is.

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Book Review: For the Love of Babies by Sue Hall

A few days ago, I stumbled across For the Love of Babies by chance and immediately wanted to purchase it. I love medical stories, and I am a former neonatal intensive care patient, so this boook seemed perfect. And it’s not been disappointing.

Synopsis

What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.

Review

In this book, Dr. Hall talks about a variety of patients. Most people do know that premature infants will spend time in the neonatal intensive care unit (NICU), but that so will babies with severe birth defects and babies born addicted to drugs, is a lesser-known fact. Although a large number of Hall’s stories are about preemies, there are also stories about babies who need to be in the NICU for other reasons, and stories about preemies who happen to aso have severe birth defects or are born addicted. The babies Hall treats range from a baby born with trisomy 18, a formerly thought to be lethal birth defect, to a baby born with Down Syndrome to a fifteen-year-old mother, and from a relatively “normal” preemie to preemies experiencing the most devastating complications. Some of the babies die, but the majority survive.

Hall includes in her stories not just the medical aspects of caring for NICU patients, but also the social and emotional aspects influencing the families and babies. For example, she ponders a mother’s reasons for using cocaine during pregnancy, leading to her child’s premature birth and ultimately death. Hall describes with caring even the bleakest scenarios. For example, one mother delivers a baby with anencephaly, a birth defect causing the baby to have virtually no brain and die shortly after birth. This mother had previously lost a baby to stillbirth who was just whisked away from her by the obstetrician. In the case of her anencephalic baby, Hall makes sure the baby and family are all as comfortable as possible and have every opportunity to love the baby until her death and even care for her afterwards.

Hall shows us not only the families’ and babies’ struggles, but also her own. For example, it’s clear that she feels disappointment with the substance-abusing mother abandoning her child shortly after he can go home, and sadness for the baby she resuscitated in the delivery room but who died of sudden infant death syndrome several months after going home.

Lastly, it is clear that Hall is very much in favor of giving parents as much control over their babies’ care as possible. I remember hearing about my own situation in which my treating neonatologist told my parents that the staff were keeping me alive and not to interfere. Usually in Hall’s stories, parents want more aggressive treatment than she recommends, sometimes with good outcomes, such as in the case of the little girl who sings to Hall at her unusually late follow-up appointmnet at four years of age.

Hall ends her book with several appendices full of advice for parents of NICU patients. I only skimmed through these, but I’m sure many parents will find the advice extremely useful.

Book Details

Title: For the Love of Babies: One Doctor’s Stories About Life in the Neonatal ICU (SmashWords edition)
Author: Sue Hall
Publisher: WorldMaker Media
Publication Date: July 2011

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Book Review: Working the Double Shift by Christine Motokane

I bought Working the Double Shift on Kobo about a month ago, but didn’t read much of it because I hadn’t installed Adobe Digital Editions on my new computer so had to get out my old one to read. A few days ago, I decided to see if the Digital Editions file was small enough that I could download it on my mobile Internet connection, and it was. I finished the book within a few days and have been fascinated by it.

Synopsis

Working the Double Shift is a raw honest autobiography from a young woman with autism. Feeling that the current books on autism were not a fit for her, Christine decided to write a memoir covering different topics as well as the emotional process of a person with autism. The book covers her journey from birth to college and how she learned to find her voice and path in life as well as interventions and approaches that worked for her. This memoir also brings awareness to different social issues regarding autism and adulthood.

My Review

I’ve read a few books by adults with autism spectrum disorders, but all were diagnosed with Asperger’s Syndrome at an age I haven’t even reached yet. Christine Motokane was diagnosed with classic autism at age four. This does provide a different perspective, as she got intervention early on and didn’t have to go through life undiagnosed and unsupported. In this sense, I can to some extent relate, as I too got supports early on, albeit for my blindness.

Motokane describes her school life really well. She describes her difficulty with transitions from elementary school up until college. She also describes her anxiety about even the utterance of the word “independence”. When speaking at a conference as a young adult, Motokane meets a professional who speaks about interdependence being more important than independence. This resonates with her and it does with me, too.

Motokane’s anxiety about independence is shown through a variety of behaviors, such as her difficulty handling menstruation and her “immature” interests. I can relate to these. I find that finally this book clarifies that anxiety about independence is not necessarily about low self-esteem, but can also be related to fear of transitions.

Throughout the book, Motokane talks about her sometimes unhealthy attachments to and relationships with various support people in her life, and her issues with making friends particularly in middle and high school. Her high school is public, but like mine, it was populated by upper-class kids. In addition, Motokane faces the challenge of being one of only a few Asian-Americans in a predominately White school. Then again, her race doesn’t seem to play an important role in her experience of exclusion, since she mentions it in passing. Fortunately, by early adulthood, Motokane discovers a group of people she does fit in with.

A really important skill Motokane describes learning is self-advocacy. In childhood and most of adolescence, she simply goes with the goals set forth by her parents and support team, although she does show some resistance (for example, by vandalizing the communication diary between her aide and her parents). This is often seen as a “behavior”. As she grows up, however, she learns to stand up for what she believes in. Despite her mostly positive experience with behavioral intervention and her mother’s involvement in a pro-cure organization, Motokane is adamant that autistic people should not be “normalized”. She also feels that autistics should be able to find their own voice (and I assume she means this somewhat figuratively, also including non-verbal autistics). This is the main reason Motokane has written the book.

Book Details

Title: Working the Double Shift: A Young Woman’s Journey with Autism
Author: Chrisitne Motokane
Publisher: Xlibris US
Publication date: February 2014

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Book Review: Wosie the Blind Little Bunny by Rose King

Wosie the little bunny wanders away from the blueberry bush. Because she is blind, she cannot find her way back. She finds a stick to tap and feel her way around. At one point, she touches something soft with her stick, which turns out to be Bobo the bear, who’s sleeping. After Wosie explains that she is blind and what that means, Bobo agrees to bring her to the blueberry bush, and they end up being friends from that point on.

Wosie the Blind Little Bunny is suitable for ages three and up. It is written in a beautifully poetic way. I ended up smiling at the rhyming several times. While Wosie is not the most independent blind bunny, and therefore some self-proclaimed competent blind adults might find this story offensive, you have to remember that Wosie is a little bunny. The story does explain the fct that blind bunnies can hear and feel fine. Overall, I liked the story and found ii very suitable for toddlers. It emphasizes the importance of friendship over differences.

Book Details

Title: Wosie the Blind Little Bunny
Author: Rose King
Publisher: Xlibris
Publication date: January 2013

Book Review: Peter’s Asparagus by Angela Nicole Krause

When looking at Kobo for children’s books that I might like to read and review, I stumbled across Peter’s Asparagus by Angela Nicole Krause. This little book is the first in a series of short stories which are easy to read, sensitive and entertaining. Peter’s Asparagus is about a young boy with Asperger’s Syndrome. Peter has a hard time making friends and he doesn’t like changes. He is however really good at math, spelling and science. The story explains Asperger’s quite well for a children’s book. I got to really feel for Peter as he was getting upset because the other children in his class laughed at him, thinking he’d said that he had asparagus. In the end, Peter can even laugh at the misunderstanding himself.

This story is really good for class or family discussion on children’s differences and disabilities. As I said, it makes the reader quite aware of what Asperger’s Syndrome is. The story also teaches about the value of friendship and about the fact that children are good and not so good at different things and that it can be good to help each other. Besdies being a good book for teaching every child about accepting differences, this book is great for children with autism or Asperger’s to feel that they are not alone.

Book Details

Title: Peter’s Asparagus
Author: Angela Nicole Krause
Publisher: York Publishing Services, Ltd.
Publication date: January 2014

Book Review: The Girl Next Door by Selene Castrovilla

Since I discovered that Adobe Digital Editions 2.0 is accessible with screen readers, I’ve downloaded a number of ebooks. Most were scientific books, with a few being memoris, and to be honest I until now hadn’t ifnished any. I usually bought my ebooks at Bol.com, the largest online media store in the Netherlands. However, when they switched to an inaccessible bookshelf format for downloading ebooks, I decided to try out Kobo. I also wanted to spread my wings in the reading departmnet, so I decided to check out some juvenile fiction, because I always used to like that better than adult fiction. In fiction, my taste is similar to that in memoirs: the book has to cover medicl, social or psychological issues. The Girl Next Door by Selene Castrovilla seemed to meet that requirement. Besides, it cost only E3,-, so I wouldn’t have wasted a lot of money if it turned out to be crap. In the end, I’m not disappointed at all.

Synopsis

Two teens are forced to make some very grown-up decisions when one of them is diagnosed with terminal cancer, twisting them into an unpredictable nightmare. Best friends since toddlerhood, Samantha and Jesse grapple with the realization that they are actually in love. What now? Beautifully written while handling a very heavy topic, Castrovilla addresses the universal question: In a world where the worst can strike at any time, how can we ever feel safe?

Review

Reading the first page, I was not thrilled. Was middle grade fiction that simple, or was my English that advanced, it being my second language? Within pages, I had to change my mind on this, because it turned out I didn’t understand some of the more commonly used words – maybe my English isn’t that advanced after all. Even so, the book is quite readable.

The book isn’t too fast-paced, but it doesn’t ge tlong-winded either. I was able to guess pretty soon that Jesse wasn’t going to get a miracle cure fo rhis cancer, but other than that, the book was not predictable at all. I wondered at several points from halfway through the book on whether the end was coming up. I don’t mean this to say the book is boring, but there were several moments at which point Jesse could’ve died and the book would be over.

What I also liked about the book, was that I developed both sympathy for and disgust with almost all characters. For example, Gwen, Jesse’s mother, starts out as a bitch, and I genuinely thought that I’d hate her throughout the book. Gradually, however, I was led to understand her better and in the end, I liked her somewhat. The book is written from Samantha’s point of view, but I believe most characters in fact ar epretty formed.

The topic covered in this book is of course quite sad, but the book didn’t just make me feel sad. I alternated between feeling angry, sad, happy, surprised and a lot of other feelings. In the end, I was left with peace. That is exactly what this book aims to teach.

Book Details

Title: The Girl Next Door
Author: Selene Castrovilla
Publisher: ASD Publishing, Ltd.
Publication date: May 2013