January 2011 TIOLI - Read a Book about a brain anomaly, emotional or physical

This is an offshoot of the main TIOLI Challenge for January: http://www.librarything.com/topic/105623&newpost=1#lastmsg

Once upon a time people with brain anomalies were thought of as cursed or as
suffering from a moral failing. Once upon a time psychoses and neuroses were thought of as emotional problems that could be treated only by conversation and support. Now brain manifestations are treated with a combination of psychopharmacology and psychology and variations of normal function are treated as malfunctions that need to be so treated. This month I hope to read books on topics from autism to schizophrenia, from Alzheimer's to low IQ. There's so much to learn about the brain, I'll just skim a little over the top.

My book for this TIOLI challenge, Darkness Visible by William Styron, was written in the late '80s so I was inspired to look up more current treatments for MDD. Styron seemed convinced of the chemical imbalance theory and tried Ativan, Halcion, Ludiomil, and Nardil before Dalmane (in the hospital) finally ended his suicidal thoughts.

The hospital chapter is still under my bookmark -- this is a super-short book, but I don't want to hurry it.

Hi Joyce, I don't know if I'll have time to actually read a book in this challenge but I want to follow this thread. I have a sister with untreated mental illness and I'm always looking for good books on the subject.

I saw that you were going to be reading The Center Cannot Hold: My Journey Through Madness by Elyn Saks. I read that last year after seeing it recommended on LT and thought it was excellent. What really struck me was how smart Saks is but how long it took her to realize the importance of taking her medication.

I've started my book for this challenge: Lottery, by Patricia Wood. It was also shortlisted for the Orange Prize in 2008. Liking it so far.

I'm listening to a book on CD's Madness by Marya Hornbacher. After being treated for much of her life for bulimia-anorexia (at one point she weighs 52 pounds) she finally has a very manic breakdown and is diagnosed with Type 1 bipolar disease, rapid cycling. After spending a while in a mental hospital her psychiatrist advises her that when she's released she has to sleep, eat, avoid alcohol, caffeine and stress and take her meds. So when she's released she works 24 hours a day when she's not either giving or going to parties, doesn't eat, drinks pots of coffee and gallons of alcohol and rarely takes her meds. She says, "You might be thinking, 'What are you thinking? Are you crazy?' Actually, yes I am." I think that's one of the hallmarks of mental illness, people don't want to take their meds. I can understand this to an extent. A degree of mania is wonderful. The person doesn't need to eat, has boundless energy, can accomplish any given task, is the life of the party, and doesn't waste time being fearful of consequences. I had a friend who was bipolar, and in her early manic phase she was great. She got herself a fine husband who adored her and even put up with all her mania-induced sleeping around. Finally he convinced her to go on medication. After years of trying to get her meds "just right" she slowed down to an almost zombie like state. The kicker was that when she was effectively medicated she realized how much her husband meant to her and began to fear he would leave her. He put up with hell when she was manic, but he left her zombie medicated self for someone more fun.

I think that's one of the hallmarks of mental illness, people don't want to take their meds.

There seems to be two big problems with the medications from what I've learned. One, the unpleasant side effects--mainly big weight gains and feeling lethargic. And two, the stigma attached to taking them--the feeling that there's something wrong with you if you have to take medication.

That was probably the most fascinating thing about reading The Center Cannot Hold: My Journey Through Madness. Saks is an exceptionally bright woman and accomplished many things while also fighting the fact that she had schizophrenia. It was only after repeated breakdowns following going off her medication that she finally accepted that the meds were necessary. A big part of her resistance to the meds was the stigma associated with having a mental illness.

phebj, the same is true of diabetes. It's so difficult to convince people that they need to take the correct amount of insulin for life. It's that
'for life" part that's difficult. Many people think "I've done what you said, I've taken my meds, now I'm tired of it and just want to be normal." It's difficult to define yourself as normal-only-when-medicatd.

#7 That's funny because one of the agruments for taking medication for mental illness is that it's just like diabetes--a physical problem that isn't your fault so there shouldn't be a stigma in taking medication for it.

I suppose some of it is just an individual's feeling about taking medication in general. Some people don't want to take it and others have no problem with it, no matter what it's for.

Before insulin was discovered people didn't live long after the diagnosis of diabetes. Insulin has been a genuine life saving treatment. The problem is that when medicated correctly people feel so healthy they might have a tendency to think the medication was just a stop gap measure to allow their bodies time to heal themselves. Before I got to know diabetics such an idea hadn't occurred to me, but now I realize the same kind of thinking can apply to those whose brain chemistry is regulated the same way.

Joyce, that's a very good and interesting point. Kind of scary how you can't necessarily rely on your own brain to make the right decisions for your own well-being.

But I also think the medical system over-medicates depression. I was on anti-depressants for twenty years. After news came out that they really only help the severest of depression, I came off them. I've been off them for a year except for a small dose of trazadone to help me sleep, and I've never felt better. How much of this is due to some excellent therapy (DBT rocks) and how much because I've been over-medicated is anyone's guess.

I finished my book for this category, Lottery by Patricia Wood. I enjoyed it. The ending had a surprising emotional impact on me. Mulling over my review.

#5 & #6 Don't forget also that for some forms of mental illness the person who is ill doesn't believe there's anything wrong with them. Therefore, in their mind, there is absolutely no reason for them to need to take any medication.

Re the side effects of medication, the side-effects of modern anti-depressants are not normally too bad - tiredness, weight gain and some bowel problems but the treatments given for other disorders (particularly bipolar medication rather than clinical depression) can give much worse side effects and it's worth remembering that medications have improved dramatically over the last few decades and whilst the side effects may be considered milder now, they most likely weren't 20-30 years ago.

#9 Yep, I think there's definitely a 'I'm feeling a bit better now so I can stop taking the meds' reaction with mental illnesses as well.

#11 I think in some cases that's true but medication can be a lifesaver for those whose severe/critical mental illnesses. For mild-moderate I'd rather see talking therapies offered more readily but I think it costs more.

And big congratulations for managing to come off the anti-depressants! I've managed to get mine down to half what I was originally taking. Slowly but surely...

Sorry if I got on my soapbox, I just wanted to try and explain a bit more why people with mental illnesses may not want to take their medication.

Don't forget also that for some forms of mental illness the person who is ill doesn't believe there's anything wrong with them. Therefore, in their mind, there is absolutely no reason for them to need to take any medication.

That's probably the biggest issue with my sister and why she sees no need to take medication. Unfortunately, it also precludes even having a conversation with her about it. She gets quite angry if you imply in any way that there might be something "wrong" with her. I remember reading somewhere that it would be just like someone coming up to you and telling you you needed to be medicated for something you didn't think you had. You'd think they were crazy.

it's worth remembering that medications have improved dramatically over the last few decades and whilst the side effects may be considered milder now, they most likely weren't 20-30 years ago.

That's another problem with talking to my sister about medication. When she was diagnosed with paranoid schizophrenia 35 years ago, she was given Thorazine (sp?) which made her sleep for 22 hours a day. She has never wanted to take anything since.

As far as antidepressants go, big pharma is pushing the idea that everyone should be on a low dose for life - think of the profits that could gain them. Sometimes it can be difficult to tell the difference between a normal reaction to events and mental illness. So, phebj, your sister thinks her reactions are normal and everyone is overreacting. From what I know about schizophrenia that's a little hard to relate to, but we do think that whatever we're living is normal. I went through one whole winter without a water heater in my young and stupid days, and it seemed pretty normal to me at the time.

Also psychiatrists, psychologists and mental therapists of all sorts can on occasion be extremely manipulative, have you seen the movie Nuts? When dealing with something intangible like ones thoughts it can be very difficult to know which reality is real. You know the term, "Just because you're paranoid doesn't mean they're not out to get you."

So, phebj, your sister thinks her reactions are normal and everyone is overreacting. From what I know about schizophrenia that's a little hard to relate to, but we do think that whatever we're living is normal.

I'm not really sure what my sister thinks--whether she sees her actions as normal or she suspects they're not but does not want to concede that. I do think she has her own "normal" just like we all do and doesn't see her behavior as the same cause for concern that I do.

In fact, if I remember correctly, that was one of the points that Elyn Saks made in her book. When she was young and first started having delusions, she thought maybe everybody was having them (and, alternately, she feared they weren't and didn't want to let on that she was experiencing them).

Here's a good interview with Elyn Saks from when the book came out:
http://www.npr.org/templates/story/story.php?storyId=12560033
and here's a program about mental illness that includes her:
http://www.mindsontheedge.com/watch/

There was a very good program about brain chemistry on PBS, but I can't find it right now.

#14 Oh Pat, that's hard, I'm sorry to hear that.

" I remember reading somewhere that it would be just like someone coming up to you and telling you you needed to be medicated for something you didn't think you had. You'd think they were crazy."

Yeah, I think that's what it would feel like.

#15 "As far as antidepressants go, big pharma is pushing the idea that everyone should be on a low dose for life"

That's a scary thought.

The Elyn Saks book sounds really interesting, I'm going to look out for that one.

And thank you all for the conversations in this thread. I haven't even listed any books under this challenge but I've found it really helpful and interesting to follow this thread.

I read Alice Sebold's The Almost Moon yesterday. I can't say I loved it, but it definitely dealt with the ways mental illness can affect a family.

That was the one about the mother, right? Hm, I remember so little of it. Want to give us a little more, krysbrezinski?

Sure! The Almost Moon opens with the narrator's explaining how she murdered her mother, the rest of the book being an exploration of her relationship with said mother and the strain her agoraphobia and depression put on the household. The novel was especially interesting for the flashbacks set in the past - 50s or 60s suburban America - when mental illness of this sort was not generally understood or accepted; the lack of compassion shown by the main characters, often, as well as their neighborhood, is disturbing.

Agoraphobia, how could I have forgotten all that? All I remember is her driving in the dark and some house in the woods, or something like that. Sometimes my brain is just pitiful.

exciting hope to read more

Thinking further about The Almost Moon which I still remember so little about, while listening to Madness this morning I thought of what you said, krysbrezinski, about the strain mental illness puts on the family. My brother died of lung cancer a year ago after having decided to put all his faith in alternative medicine and positive thinking. Even after he died his wife couldn't understand how it could have happened since they had worked so hard to stay positive and do all the things their quack doctor had told them to do. The whole 8 months of this regime I was just furious. I was as supportive as I could be but it was very difficult for me to control my anger at their obviously stupid, deadly choices. I think having a mentally ill person in the family would lead to some of those same feelings.

The whole 8 months of this regime I was just furious. I was as supportive as I could be but it was very difficult for me to control my anger at their obviously stupid, deadly choices. I think having a mentally ill person in the family would lead to some of those same feelings.

Joyce, I'm sorry to hear about your brother. I've spent alot of time being angry at both my sister and my parents, who I felt enabled her by letting her live with them with no condition that she get treatment. About 4 years ago, my parents moved into assisted living and my sister had to make it on her "own" (my father continued to send her money occassionally). She ended up meeting someone and getting married so for the moment things are relatively stable. My father passed away two years ago and left some money in a trust for her but it's not enough that she doesn't have to worry about basic living expenses. Because things have been relatively calm for awhile, I'm not spending alot of time worrying about what will happen to her but I know that things could change at any time. Anyway, just wanted to agree with your comment.

Also, thanks for those links re Elyn Saks. I need to go back and check those out.

I also wanted to mention a book called The Normal One: Life with a Difficult or Damaged Sibling by Jeanne Safer. From Amazon: "Drawing on concrete examples from her own life and also from her interviews with 60 other siblings, she identifies the key symptoms that no one escapes, including premature maturity, survivor guilt, compulsion to achieve, the fear of contagion, and jealousy."

I have to say I relate to all of that. Even though I know schizophrenia isn't contagious, I've had moments of worrying that I might go crazy some day. I've also been jealous of all the time my family has spent talking about my sister's problems and feeling guilty that my life has gone relatively well.

I finished Lottery about a man with an IQ of 76 which he says proves he's not retarded, just slow. Here's another family challenge. How do you raise such a child to lead a productive, independent life? Well, of course, how do you do that for any child, but a child with a strong disability makes it all the more difficult. Now I finally get to get to The Center Cannot Hold. I'm so looking forward to this.

I'm toward the end of Madness. There's nothing like reading about mania to make one breathless. Yes, I'm definitely too suggestible to be a mental health nurse. The sad thing about mental illness is that it's treatable but not always successfully. Hornbacher takes her meds, then takes new varieties of meds, then takes larger doses of new varieties of meds and still cycles between mania and depression and in and out of mental hospitals. It's a very challenging disease for the person, for her friends and family, for her employers and for anyone trying to care for her.

I'm about half way through The Center Cannot Hold and am impressed by how Saks (in a schizophrenic break) is treated in England with dignity and respect but no meds and in America with forced medication, no dignity, and no respect. The latter, so far at least, seems to exacerbate her condition, but is done for the safety of her health care providers and also, it seems, as a way to "get even" with her for being such a pain.

I finished The Center Cannot Hold and I would recommend it to anyone. What a strong woman, and how strongly she resisted taking anti psychotics. I think part of that was her 2 years in Synanon ( her father was such a control freak he sentenced her to 2 years of out patient rehab when she smoked pot a couple of times as a teenager). I checked out Synanon when I was in college in the 60's. They're pretty over reactive people, and I'm sure their 2 years work of indoctrination influenced her ideas that if she were strong enough she could force her brain out of its delusions without meds.

Glad you liked The Center Cannot Hold, Joyce. I also thought it was an excellent book and could be appreciated by anyone. Saks is a good writer and I thought her struggle to manage her illness was inspirational and applicable to alot of other problems people have, not just schizophrenia.

I had forgotten the part about the contrast between the help she got in England versus the help she got in the US. That was a scary difference.

The Center Cannot Hold sounds really interesting, Joyce. I'll have to check it out.

This is a quote posted elsewhere from the shooter of Representative Gabrielle Giffords in Tucson:
"Most people, who read this text, forget in the next 2 second!
The population of dreamers in the United States of America is less than 5%!
If 987,123,478,961,876,341,234,098,601,978,618 is the year in B.C.E. then the previous year is 987,123,478,961,876,341,234,098,601,978,619 B.C.E.
987,123,478,961,876,341,234,098,601,978,618 is the year in B.C.E.
Therefore, the previous year of 987,123,478,961,876,341,234,098,601,978,619 B.C.E.
If B.C.E. years are unable to start then A.D.E. years are unable to begin.
B.C.E. years are unable to start.
Thus, A.D.E. years are unable to begin.
If A.D.E. is endless in year then the years in A.D.E. don't cease.
A.D.E. is endless in year.
Therefore, the years in A.D.E. don't cease."

This could have come right out of Elyn Saks or Marya Hornbacher. Saks says restraints haven't been used in England in 200 years (I think that was the time frame). They seem to have less fear of the mentally ill than we do. And then you have something like this shooting that reminds us how much we have to fear. It's a difficult situation, to be sure.

THanks for the discussions on this thread, very interesting and an area I'd like to read more about, so I'm glad for a couple of suggestions here.

Madness ended with some interesting statistics. Hornbacher says that the suicide rate for those with bipolar is far above that for the normal population, also that they have very high incidences of substance abuse and divorce. She says that there is no magic pill that cures the disease and that the amount of money put into researching it is less than for diabetes, Alzheimer's or schizophrenia. She says that her medication costs her $300 weekly, of which she pays $100, and that her last hospitalization cost $45,000 of which she paid $10,000 and insurance covered the rest. She chronicles 7 hospitalizations in a row over a period of a few years. Insurances that limit mental health treatment to so much a year or so much over a life time can never handle the cost of effective treatment, because the disease isn't cured in a year. It's a chronic condition. Fortunately Hornbacher and Evlyn Saks both have family and friends to help with finances and emotional support. You can see why there are homeless "crazy" people standing on the corner yelling at cars. They didn't have the resources.

Just finished Left Neglected by Lisa Genova. I would definitely recommend this book as well as Genova's first book Still Alice, another book about a brain anomaly.

Brenpike, what is Left Neglected about? I hope I'll get to Still Alice next week.

I finished The Lives They Left Behind: Suitcases from a State Hospital Attic, a mighty powerful book. It fits in with so many books I've read recently in which it's shown how far people with no resources can fall. Darby Penney's theory is that state mental hospitals grew with the reform movement that encouraged more humane treatment of the mentally ill combined with the eugenics movement which encouraged the removal from society of those deemed unworthy to reproduce for the duration of their reproductive years. By examining the lives of the owners of some of the suitcases left after the closing of Willard State Hospital Penney showed how people who had what were perhaps just situational responses to devastating life circumstances: the deaths of loved ones, divorce, unemployment, dislocation from their country or their peers could be judged to be mentally defective and locked away from society for life, no matter what they did to regain their freedom. It's such a frightening idea. When psychopharmaceuticals were finally introduced they were given rather willy nilly to people even when they were shown to cause irreversible tardive dyskinesia. People were given round after round of electroconvulsive therapy as an attempt to control them. These living adult members of society were thrown into a state hospital and used as slave labor for life. Entire human lives were stolen.

Elyn Saks and Marya Hornbacher both comment on the chronic nature of some mental illnesses, and Saks agrees with Penney that peer interaction can be the most effective form of therapy, but that requires that we offer respect and dignity to those suffering emotional problems, and that concept is foreign to much of the health care industry.

I realized that my current read, No and Me, qualifies for this challenge in an unexpected way. The protagonist is a 13-year-old girl with an IQ of 160, and the book touches on some of the ways that she has trouble fitting in at school and understanding the world. This is a situation that I'd like to read more about; there tends to be a lot of focus on people who struggle because of low intellectual ability, while I've read very little about people who have trouble dealing with the world because they're so different from average in the other direction.

It seems life would be so much easier with such an IQ. I guess that's not true. Beautiful people aren't guaranteed happiness, so I guess those with high IQ aren't either, but it must help. Let us know.

You Don't Look Like Anyone I Know pretty much epitomizes this thread and also, I'd say, what it means to be human in the world today. Heather Sellers grew up with a paranoid schizophrenic mother, and alternately with a completely irresponsible father who both told her there was something wrong with her mind. Turns out they were right. It wasn't until she was 30 years old and trying to figure out what was wrong with her mother that she realized that she has the condition prosopagnosia or face blindness, and she has it in spades. She recognizes people by their clothing, hair, accessories, stance or gait but can't recognize their faces. She closes her eyes after looking right at her husband and find she cannot describe him or herself. Her vision is fine, her perception is completely off. People think she's stuck up or stand offish because she doesn't speak to them, when she tells her stepsons, finally, about her condition they don't believe her. She describes the condition as being like a normally perceptive person's looking at faces upside down. We can't recognize faces that way. Oliver Sacks has the condition, here's an interview with him http://www.newyorker.com/online/2010/08/30/100830on_audio_sacks

Jane Goodall also has the condition, though to a much lesser degree, here's an interview with her: http://www.achievement.org/autodoc/page/goo1int-5

With all the financial chaos right now this book talks about how to live with ambiguity. Sellers has figured it out, and I'm very impressed.

I also finished Still Alice which is a tear jerker of a novel about a Harvard professor who is diagnosed with early onset Alzheimer's disease. Aside from the gut-wrenching emotional part of the novel, there are some very pertinent descriptions of the various stages of the disease. Both suicide and abortion are obliquely mentioned, but I guess Lisa Genova didn't want to get sidetracked into talking about those issues. I remember that one of the people Jack Kevorkian assisted with suicide was a woman with Alzheimer's, and that people were horrified at that. They said that she was still functioning and they couldn't grasp the idea that she realized how much she was losing and that she knew she wouldn't be able to function well enough to make the suicide decision later.

Lots and lots of food for thought here, Joyce. My read this month was The Man Who Mistook His Wife for a Hat by Oliver Sacks. Nowhere in the book, which starts out with a patient sketch of one who has this disease (prosopagnosia), does Sacks mention that he suffers from it himself. I was struck by what I thought was an extremely unusual condition; perhaps not quite as unusual as I imagined.

Sacks's book demonstrates a tremendously caring attitude about the people who are afflicted with various disorders (my personal favorite is "Witty Ticcy Ray", a man who with Tourette's who gave himself that nickname). It's very moving and yet filled with wonder at the strange things that can happen inside the human brain. I highly recommend the book to anyone who is interested in these things.

Having grown up with a mother who was, um, perhaps not totally healthy, I understand about the dread of medicines, the denial of anything being "wrong", etc. That does make it terribly hectic for family members, bewildering and difficult sometimes for children involved. Back in the fifties it was terribly frightening to be a patient with a mental illness, as the horrors of shock treatment loomed menancingly in the background. I think that was why I was so impressed with Sacks's book: every patient was first a person, then a patient.

Oliver Sacks is quite the guy, isn't he. If I'd had time I would have liked to include a couple of his books, especially Musicophilia: Tales of Music and the Brain and the one referred to in the interview The Mind's Eye. I'd also like to have included a book that I think refers to him Great Philosophers Who Failed At Love. I think he's a philosopher too, don't you? Oh well, all things in time.

I'd love to read Musicophilia some day - first must get hold of a copy... It's sure to fit into another TIOLI category soon enough.

I have Musicophilia: Tales of Music and the Brain though haven't read it yet. I did hear him speak about it though and diagnosed my sister with the opposite (though I don't remember the word for it). She's married to a man who loves music and loves to sing yet she perceives music as cacophony, especially classical music, which is just as Sacks explains because it doesn't have a set rhythm. Until I heard him speak, I kind of thought she was making it up. Oh me of little faith, which is kind of the way people often respond to a brain anomaly.