India Morgan Phelps, Imp to her friends, is sure that there were two different Eva Cannings who came into her life and changed her world. And one of them was a mermaid (or perhaps a siren?) and the other was a werewolf. But Imp’s ex-girlfriend, Abalyn, insists that no, there was only ever one Eva Canning, and she definitely wasn’t a mermaid or a werewolf. Dr. Ogilvy wants Imp to figure out for herself what actually happened. But that’s awfully hard when you have schizophrenia.
I’d heard that this book was a chilling mystery featuring GLBTQ characters and mental illness. When I discovered it on Audible with an appealing-sounding narrator, I knew what I was listening to next. This book is an engaging mystery that also eloquently captures the experience of having a mental illness that makes you question yourself and what you know while simultaneously giving a realistic glance into the queer community.
Imp is an unreliable first person narrator, and she fully admits this from the beginning. She calls herself a madwoman who was the daughter of a madwoman who was a daughter of a madwoman too. Mental illness runs in her family. She states that she will try not to lie, but it’s hard to know for sure when she’s lying. This is due to her schizophrenia. Imp is writing down the story of what she remembers happening in journal style on her typewriter because she is trying to figure out the mystery of what exactly happened for herself. The reader is just along for this ride. And it’s a haunting, terrifying ride. Not because of what Imp remembers happening with Eva Canning but because of being inside the mind of a person suffering from such a difficult mental illness. Experiencing what it is to not be able to trust your own memories, to not be sure what is real and is not real, is simultaneously terrifying and heart-breaking.
Imp’s schizophrenia, plus some comorbid anxiety and OCD, and how she experiences and deals with them, lead to some stunningly beautiful passages. This is particularly well seen in one portion of the book where she is more symptomatic than usual (for reasons which are spoilers, so I will leave them out):
All our thoughts are mustard seeds. Oh many days now. Many days. Many days of mustard seeds, India Phelps, daughter of madwomen, granddaughter, who doesn’t want to say a word and ergo can’t stop talking. Here is a sad sad tale, woebegone story of the girl who stopped for the two strangers who would not could not could not would not stop for me. She. She who is me. And I creep around the edges of my own life. Afraid to screw off the mayonnaise lid and spill the mustard seeds. (Part 2, loc 55:35)
The thing that’s great about the writing in the book is that it shows both the beauty and pain of mental illness. Imp’s brain is simultaneously beautiful for its artistic abilities and insight and a horrible burden in the ways that her mental illness tortures her and makes it difficult for her to live a “normal” life. This is something many people with mental illness experience but find it hard to express. It’s why many people with mental illness struggle with drug adherence. They like the ability to function in day-to-day society and pass as normal but they miss being who they are in their own minds. Kiernan eloquently demonstrates this struggle and shows the beauty and pain of mental illness.
Dr. Ogilvy and the pills she prescribes are my beeswax and the ropes that hold me fast to the main mast, just as my insanity has always been my siren. (Part 1, loc 4:08:48)
There is a lot of GLBTQ representation in the book, largely because Kiernan is clearly not just writing in a token queer character. Imp is a lesbian, and her world is the world of a real-to-life lesbian. She is not the only lesbian surrounded by straight people. People who are part of the queer community, in multiple different aspects, are a part of Imp’s life. Her girlfriend for part of the book is Abalyn, who is transwoman and has slept with both men and women both before and after her transition. She never identifies her sexuality in the book, but she states she now prefers women because the men tend to not be as interested in her now that she has had bottom surgery. The conversation where she talks about this with Imp is so realistic that I was stunned. I’m not sure I’ve ever seen a conversation about both transitioning and the complicated aspects of dating for trans people that was this realistic outside of a memoir. Eva Canning is bisexual. It’s difficult to talk about Eva Canning in-depth without spoilers, so, suffice to say, Eva is out as bisexual and she is also promiscuous. However, her promiscuity is not presented in a biphobic way. Bisexual people exist on the full spectrum from abstinent to monogamous to poly to promiscuous. What makes writing a bisexual character as promiscuous biphobic is whether the promiscuity is presented as the direct result of being bi, and Kiernan definitely does not write Eva this way. Kiernan handles all of the queer characters in a realistic way that supports their three-dimensionality, as well as prevents any GLBTQphobia.
The plot is a difficult one to follow, largely due to Imp’s schizophrenia and her attempts at figuring out exactly what happened. The convoluted plot works to both develop Imp’s character and bring out the mystery in the first two-thirds of the book. The final third, though, takes an odd turn. Imp is trying to figure out what she herself believes actually happened, and it becomes clear that what she ultimately believes happened will be a mix of reality and her schizophrenic visions. That’s not just acceptable, it’s beautiful. However, it’s hard to follow what exactly Imp chooses to believe. I started to lose the thread of what Imp believes happens right around the chapter where multiple long siren songs are recounted. It doesn’t feel like Imp is slowly figuring things out for herself and has made a story that gives her some stability in her life. Instead it feels like she is still too symptomatic to truly function. I never expected clear answers to the mystery but I did at least expect that it would be clear what Imp herself believes happened. The lack of this removed the gut-wrenching power found in the first two-thirds of the book.
The audiobook narration by Suzy Jackson is truly stellar. There are parts of Imp’s journal that must truly have been exceedingly difficult to turn into audio form, but Jackson makes them easy to understand in audio form and also keeps the flow of the story going. Her voice is perfect for Imp. She is not infantilized nor aged beyond her years. She sounds like the 20-something woman she is. I’m honestly not sure the story would have the same power reading it in print. Hearing Imp’s voice through Jackson was so incredibly moving.
Overall, this book takes the traditional mystery and changes it from something external to something internal. The mystery of what really happened exists due to Imp’s schizophrenia, which makes it a unique read for any mystery fan. Further, Imp’s mental illness is presented eloquently through her beautiful first-person narration, and multiple GLBTQ characters are present and written realistically. Recommended to mystery fans looking for something different, those seeking to understand what it is like to have a mental illness, and those looking to read a powerful book featuring GLBTQ characters whose queerness is just an aspect of who they are and not the entire point of the story.
4 out of 5 stars
As you all know, the one reading challenge I host is the Mental Illlness Advocacy (MIA) Reading Challenge. Since we’re into the last week of the year, I’d like to post the 2012 wrap-up.
This year, I read 8 books that count for the challenge, successfully achieving the Aware level.
The books I read and reviewed for the challenge, along with what mental illness they covered, in 2012 were:
- The Sparrow by Mary Doria Russell
4 out of 5 stars
- The Story of Beautiful Girl by Rachel Simon
4 out of 5 stars
- Barefoot Season by Susan Mallery
4 out of 5 stars
- Abject Relations: Everyday Worlds of Anorexia by Megan Warin
4 out of 5 stars
- A Long Way Down by Nick Hornby
4 out of 5 stars
- Haunted by Glen Cadigan
3 out of 5 stars
- January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield
4 out of 5 stars
- Germline by T. C. McCarthy
4 out of 5 stars
The books I read covered genres from scifi to thriller to memoir to academic nonfiction to historic fiction. I’m also a bit surprised to note in retrospect that all but one of these books received four stars from me. Clearly the books I chose to read for the challenge were almost entirely a good match for me. It’s no surprise to me that I enjoy running this challenge so much then. :-)
The most unique book for the challenge was The Sparrow. The scifi plot of first contact with aliens was a very unique wrapping for a book dealing so strongly with mental illness. Most challenging was Abject Relations: Everyday Worlds of Anorexia, which was my first foray into university-level Anthropology. Something I’d like to see more of is more memoirs by parents of children with a mental illness, like January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her. That was an interesting, new perspective for me. I think I’d also like to read more schizophrenia books next year, as well as books that challenge the gender norms perceived of in certain mental illnesses, such as the idea that eating disorders are female or that alcoholism is male.
If you participated in the challenge this year, please feel free to either comment with your list of reads or a link to a wrap-up post. I’d love to see what we all successfully read this year!
And if the MIA Reading Challenge sounds like a good match for you, head on over to the challenge’s main page to sign up for the 2013 iteration!
Book Review: January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield
Michael and Susan thought their daughter, January’s, high energy levels and vivid imagination were the result of her high IQ, but when she turned five her imaginary friends started to tell her to do bad things like hit her baby brother or throw herself out of windows. Soon it became apparent that her imaginary friends were actually hallucinations. What followed was a harrowing struggle to get their daughter diagnosed and treated.
It’s rare to see a memoir by a father. There are a ton of memoirs by mothers but not a lot by fathers, particularly not by fathers of daughters. Put this together with the fact that Jani (her parents’ nickname for her) has childhood-onset schizophrenia, and you have one unique book.
This is an excellently told memoir. It opens with Michael speaking about having his daughter’s diagnosis now and struggling with all the barriers toward a normal life presented not just by her illness but by the world we live in. He talks about how some people argue that it’s impossible to diagnose a child with a mental illness, let alone schizophrenia, and of course some people even suggest that Jani is possessed by demons. He gets the denial. It’s scary to see a child consumed by an illness that is completely arbitrary in choosing its victims. But he says,
Denial is not going to help Jani or any of the other mentally ill and schizophrenic children I have come to know. What they need is acceptance. What they need is for us to be telling them “your illness does not define you.” We cannot go inside their minds and “fix” them. But we can fix the world so they can live in it. (location 90)
That speaks very strongly toward the whole reason I created the Mental Illness Advocacy Reading Challenge, and I knew then that this was going to be not just a unique read, but a challenging and good one.
After the introduction, Michael tells the story in a linear fashion. He does a good job remembering how he felt in the early days. His immense pride at his daughter’s high IQ and creative mind coupled with a determination to help her succeed and be herself. It’s fascinating to see, as an outsider, how early there were warning signs that something was not quite right with Jani but that Michael and Susan (her mother) attributed to a positive cause. I think that’s typical of parents and indeed of anyone who loves someone. They were looking for the best. Believing in the best for their daughter. They may be that moderately annoying couple on the play date who just insist their daughter with inappropriate behavior is gifted, but seeing it from Michael’s perspective makes that make sense. Most people (with the exception of parents with Munchausen by Proxy Syndrome) don’t want to believe that their child is sick. So of course you exhaust every other option first.
This of course makes Jani’s move toward violent behavior at the age of five that much more heart-breaking to read. I’ve heard and read stories and documentaries of how difficult it is for parents of young adults who become schizophrenic but at least they are adults. To have this happening to your five year old is completely terrifying. How do you control a child for whom no punishments seem to work? Who is more concerned with appeasing her hallucinations than with obeying her parents?
I certainly don’t agree with all the parenting choices the Schofields made in the first five years of her life (and for the record, neither do all of the psychiatrists), but none of their choices would create schizophrenia. Being overly lenient with your kids won’t make them hallucinate and become this violent at the age of five. This is one of those occasions where you don’t always agree with the choices the memoirist made, but you’re also not right in the heat of the battle. It’s far easier to say, “oh, you should have done this,” when it’s not your child who’s being lost to a mental illness right before your eyes.
That’s the thing about this memoir. Michael is so obviously completely honest. He tells things that happened that don’t present him in the best light. He is completely forthcoming in his own shortcomings, but he reiterates over and over how much he loves his daughter and wants to keep his family together. This combination does for this memoir what a lot of memoirs don’t have: it lends a complete sense of validity to the story as a whole. Michael is so honest about the emotional struggle of it all that even though you may not like him as a person, you respect him as a father.
This level of honesty combined with his writing ability make this memoir a strong call. A call to parents of children who are other-abled (whether mentally or physically) that they are not alone. It’s also a call to the rest of us who are not one of these parents to take a moment to think how difficult it must be and go easier on the parents and the child. I know I for one might think the next time I see a kid throwing an epic tantrum, “Maybe that child has an illness” instead of “Sheesh, do a better job, parents.”
Overall, this is a well-written memoir presenting the unique perspective of a father caring for a daughter with a mental illness. It also provides one of the few accounts of childhood-onset schizophrenia. Highly recommended to parents with special needs children, as well as to anyone who enjoys memoirs and the different perspectives reading them can bring.
4 out of 5 stars
The Neuroscience of Autism and Learning Disabilities (Science Librarian Boot Camp 2012 Tufts University)
Instead of inundating you with my notes from yet another professional development session, I decided to select out my favorite part to share with you all. Out of everything I did in the Science Librarian Boot Camp, I enjoyed the Neuroscience presentations the most. So, here they are. Enjoy!
“Genetics of Neurodevelopmental Disorders,” Dr. Anthony Moncao, Tufts University
- Genetics studies Genes. Neurodevelopment studies Proteins and Regulatory DNA. Imagining studies the Brain. Psychiatry studies Behavior.
- Genes aren’t determinative. They interact with the environment.
- There is very strong evidence that genetic factors increase risk.
- Susceptibility genes–genes that with environmental factors increase risk for these diseases
- How do we find susceptibility genes?
- Identify a chromosomal translocator and neurodevelopmental disorder.
- Copy number variants –> Deletion or addition/duplication of material. We all have these in some variation but in some instances they hit important areas. They are inherited or de novo (neither parent had it).
- What is “strict” Autism?
- Impairment in: verbal and nonverbal communication, reciprocal social interaction, repetitive and stereotyped patterns of interest (don’t ilke change)
- Onset before 3 years
- male to female ratio: 4 to 1
- Autism Spectrum includes Asperger Syndrome, PDD-NOS (removed from DSM5)
- Autism Spectrum has a combined incidence of about 1%
- 5% of Autism Spectrum disorders are comorbid with Fragile X, Tuberous Sclerosis, Down’s, muscular dystrophy, and other Mandelian disorders.
- What are the genetic factors in Autism?
- heritability is about 85 to 92%
- rate among siblings is 3 to 9%
- It is one of the most strongly genetic of childhood-onset psychiatric disorders.
- No evidence yet for genes with variants in all forms of Autism.
- Hardly any two autistic kids are gonna be the same (genetically).
- Many of these genes are important in synapses.
- Cadherin 8 (CDH8) is probably the culprit in these microdeletions.
- Variable expressivity –> a deleted gene can cause multiple different outcomes (autsim, learning disorder, etc…) so evidence is strong environment is a factor
- Future prospects include: Cohorts, sequencing, translation, use of rare CNVs diagnostically, genetic counseling, early intervention for sibs, CNVs may help us predict the outcome.
- Projected future difficulties include: CNVs are common, so we have to be sure the one we’re calling Autism really is. Ethical issues of testing children before they have any symptoms.
- Autism has very complex etiology.
- Collaboration is important to make progress.
- Specific Language Impairment.
- Just as frequent as dyslexia/autism.
- It is a difficulty acquiring expressive and/or receptive language despite adequate intelligence and no physical problems (ie deafness). Problems in producing and comprehending speech, problems reading, normal nonverbal IQs.
- It has an almost 100% heritability.
- Inheritance is simple but complex phenotype.
- The damaged gene –> FOXP2
- A transcription factor.
- Important in how the rest of the gene is regulated. Kind of like a master switch.
- Not the gene for speech (found in nonverbal species but important in vocalizations. Mice won’t squeak properly. Songbirds can’t learn songs if it is damaged.)
- FOXP2 inhibits CNTNAP2 from being expressed (Sitting on it and not letting it make RNA).
- Where is FOXP2 expressed in the brain? In the basal ganglia, phallus, cerebellum (motor centers).
- Chimps are more similar to mice than humans in this gene.
- FOXP2 is a regulatory gene. Its downstream targets offer entrypoints into neural pathways involved in speech and language.
- Developmental Dyslexia.
- It is a diagnosis of exclusion.
- 5% of schoolchildren have it.
- Males are 3 to 4 times more effected than females.
- Gene variant is two times as frequent in dyslexics as in controls.
- Variants in KIAA0319 repress the expression of the gene.
- These variants increase risk in reading problems in the general population.
- May inhibit migration of neurons to the right are of the cortex.
- ectopia–small bundles of neurons in the wrong area of the cortex
- 4 dyslexia susceptibility genes have been found so far.
- All 4 play a role in neuronal migration and/or axonal growth.
- DNA is not determinative. There are many other factors involved.
“Neuroimaging of Children’s Brains,” Dr. Jean Frazier, UMass Med
- Goal: To explore how neuroimaging techniques provide insight into potential biomarkers for childhood onset neuropsychiatric disorders.
- Basic principles of brain development: structures start small, get big, then get small again
- 8 to 14 is an important age range.
- They exuberate then prune, and it is the pruning that is important.
- The more complicated a process is the more potential it could go awry.
- Pruning is guided by “use it or lose it.”
- The exact timing varies by structure.
- birth to 3–time of rapid intellectual, emotional, and physical growth of brain and brain wiring
- by age 6–95% of brain development completed
- 8 to 13–2nd major brain growth spurt
- 13 to 20s–pruning to organizing, especially in frontal cortex.
- We can measure things that require energy using: PET, SPECT, fMRI, EEG, MEG
- What MRI can tell us: structure, metabolites, blood flow, connectivity
- MRS–noninvasive, analytic method to measure chemicals within body parts
- If we are going to fully appreciate what is going wrong in brains, we have to fully understand what is going right in brains.
- Whereas gray matter gets pruned, white matter increases.
- Less gray matter, brain becomes more efficient.
- But what happens in atypical development?
- More blood flow in amygdala of depressed and anxious.
- amygdala–governs ability to modulate our affect
- Bipolars have abnormal connectivity in brain, especially in areas dealing with affect regulation and attentional capacity.
- Application to Autism?
- Recommends “Localization of white matter volume increase in autism and developmental language disorder” in Annals of Neurology by Herbert et al
- Children with autism have more white matter.
- Tracks most severely affected in Autism are growing/changing just after birth.
- Biomarkers are a distinct characteristic that is an indicator of a particular biological condition or process.
- Maybe the genetic risk factors are indicators of the dysfunction not the disorder.
- Both schizophrenia and autism symptom is social withdrawal.
- 1 in 54 boys and 1 in 252 girls (1 in 88 children) have Autism Spectrum, according to study from 2008
- Inhibition of GABA and excitation of Glutamate are associated with autism.
- Tuberous make too little of a certain protein. Fragile X makes too much.
- Glutamate levels are higher in Autism.
- Biomarkers could be used as predictors for treatment response.
Connie, a 30-something Chicana of the 1970s who has led a rough life, enjoys the time she spends in 2137 at Mattapoisett with Luciente. She believes she is a catcher and Luciente a receiver, which allows her to time travel in her mind. Luciente tells her there are two possible futures, and they need her and all the downtrodden to fight and not give up or the utopian future of Mattapoisett will be lost. Connie’s family and friends, however, believe she is schizophrenic and in need of their help. Who is right?
I almost gave up on this in the first chapter when we discover that Connie’s daughter has been taken away from her due to child abuse. Connie blames everything bad in her life on other people–the police, social workers, white people, her brother, etc… She takes no responsibility for anything. I was concerned that Connie’s opinions were the author’s opinions as well–blame society for everything and take no individual responsibility. I was wrong about that, though, and I am very glad I didn’t stop reading.
Marge Piercy’s writing is astounding. She sets up a complex social situation and leaves it open-ended for the reader to decide who is right, what the problems really are, who is to blame, how things can be fixed. Unlike most books regarding time travel or mental illness, it is not obvious that Connie is actually time traveling or that she is schizophrenic. This fact makes this a book that actually makes you think and ponder big questions.
The future world of Mattapoisett is of course the reason this book is considered a classic of feminist literature. In this society it has been decided that all of the bad dualities of have and have not originate from the original division of male and female, so they have done everything they can to make gender a moot point. The pronouns he and she are not used, replaced with “per,” which is short for “person.” Women no longer bear children, instead they are scientifically made in a “breeder,” and then assigned three people to mother it. These people can be men or women; they are all called mother. In the future of Mattapoisett, women are allowed to be strong; men to be gentle, and that is just the tip of the iceberg of the interesting, thought-provoking elements of Mattapoisett.
At first I was concerned that this book is anti-psychiatry, but really it is just pro-compassion. The reader is forced to observe the world from multiple atypical perspectives that force a questioning of world view. More importantly though it helps the reader to put herself into another person’s perspective, which is something that it is easy to forget to do. To me the key scene in the book (which doesn’t give away any spoilers) is when two people in Mattapoisett dislike each other and are not getting along. The township gets them together and holds a council attempting to help each person see the situation from the other’s perspective, as well as to see the good in the other person.
What I’ve said barely touches the surface of the wonderful elements of this book. I absolutely loved it, and it is a book I will keep and re-read multiple times. I highly recommend it to all.
5 out of 5 stars