Tag: Medical/Health

Stories of Life, Death, and Brain Surgery

by Henry Marsh

I have a friend who underwent brain surgery last year for a tumor. He had a fifty/fifty chance of recovering without complications, and thankfully that was the case. It could have very well been otherwise. I thought about that a lot as I read this book. It’s authored by a neurosurgeon who works in the NHS- so a lot of details about the system and management were a bit different than what I’m used to, but all the same in a way- frustrations caused by things out of his control, for example. Like sending away for a test while the patient is waiting for their operation and something happens so the test never comes so the procedure gets delayed to the next day- resulting in a very upset patient of course. The surgeon was usually kind and apologetic, but at the same time he often came across as arrogant or dismissive, as when he waved aside someone’s concerns that they woke up from surgery with huge bruises on the face (doctor knew it would go away quickly, patient was very alarmed). The book is full of individual stories about different cancers and injuries he treated- sometimes with descriptive details on how the procedures are performed, other times with more about the patients as people, or the circumstances surrounding the surgery, or how the surgeon felt himself about it all. The tricky balance he had to keep between caution and confidence, to do such delicate and dangerous things inside people’s heads. Some of the stories have good endings, some are terribly tragic, and occasionally there’s one where he never hears of the patient again. As many of the people seeking treatment (or their families) were elderly suffering from brain tumors, there’s also things about end-of-life care and decisions- brought to mind Being Mortal. And purely from the descriptions of the physical art and skill, I was reminded of Mortal Lessons. I also had in mind the few Oliver Sacks books I’ve read- when Marsh explained how specific damage to the brain would affect certain parts of the body or abilities. I think what struck me most about this account, is how acutely honest the surgeon was about his mistakes. It’s rather terrifying to think that if you need brain surgery done, it is, after all, another human performing the operation.

Rating: 4/5
291 pages, 2014

More opinions:  Ex Libris
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by Betty MacDonald

Author of the famed book The Egg and I wrote this memoir about her time in a sanatorium when she caught tuberculosis in her thirties. She had to quit her job and leave her young children at home with her mother, not knowing if she would even return. The place sounded very dismal. No talking, laughing, even reading in bed! Sponge baths only once a week, hair getting shampooed even less frequently. Her greatest complaint was simply being cold all the time, even when hot water bottles were brought to her bed, they were lukewarm at best. The main treatment at the time (1930’s) was very strict bed rest- and there were a number of unpleasant-sounding surgical procedures that were done to intentionally collapse the lung in order to make it rest completely. I can’t imagine having to lie absolutely still in a bed for weeks or months on end. She mentioned quite a few patients who had been in the sanatorium for years. Rumors abounded among the patients of who had died, what type of surgeries or treatment they’d had, etc. Sounded like nothing was ever explained to the patients- where they were going when a nurse arrived with a wheelchair, what the results of tests were, what the doctor thought after evaluating their condition, etc. Always kept in the dark- and then lectured to constantly about the rules.

Well, eventually she healed enough to be allowed to sit up in bed for a short period of time per day, which was gradually extended until she earned the privilege to walk to the bathroom, or down the hall, or have a bed outside on the porch, etc. She gives lively character sketches about her fellow patients, roommates, the nurses and staff- sometimes not very complimentary, of course. Oddly enough, what I found most interesting about this book was simply reading about treatment for a disease that doesn’t seem to be a huge problem anymore- how archaic and long-suffering it sounded. How dismal the outcome for so many. While I could tell the author was attempting to put a humorous spin on everything, I only chuckled a few times, I didn’t really find it funny even when I knew she was exaggerating. It just felt- kind of dull. Might be my mood. Of course she was relieved to finally be declared healthy enough to go home- but then had to face a difficult adjustment period, still finding more to relate to with her prior roommates from the sanatorium- she stayed in touch with a few- disgruntled that her family hadn’t cleaned out the room she was going to stay in, and alternately annoyed or embarrassed that many people shunned her presence in public, fearful she was still contagious. It’s interesting for a glimpse into the past, but I didn’t find it much more than that. I think I ought to read it again at another time.

Rating: 2/5
226 pages, 1948

More opinions: A Penguin a week
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by Sharon Draper

This middle-grade fiction is about a ten-year-old who has cerebral palsy. Melody is plenty smart and has a photographic memory, but she can’t walk, feed herself or speak- until she gets a new computer that gives her a voice. At school she’s been in a special education room for years, but is now excited to be “integrated” into music and a few other classes per day with the regular kids. Especially with a fancy new wheelchair she can drive by herself and then her talking computer. She just wants to fit in but it’s hard. More kids notice her now that she has a voice, but she still gets stared at or outright teased and insulted. Nobody seems to believe that she’s anything other than mentally deficient, even the teachers have this demeaning attitude. Several kids seem to think the computer is allowing her to cheat- and two girls in particular single her out to be mocked. Melody is determined to prove herself and joins the quiz team, but things turn disastrous right before a big competition. Some kids on the team seem determined to sabotage Melody’s ability to participate- but in the end, they’re only ruining their own chances.

I found this book at a library sale. Surprised to realize I must have read it before- but I only recalled things from the beginning and end. The whole thing about the fake snowman they decorated was really familiar, and so was the intensely dramatic scene at the end involving Melody’s little sister. I’m baffled why I had forgotten nearly all of the middle events- including everything about the quiz team- and why this book wasn’t already noted on my blog, when it was published after I started keeping a record. I must have read it with my oldest at a younger age, and maybe we only read parts together.

Regardless, certain aspects of the book didn’t work for me personally- some of the adult’s actions felt unrealistic, the way Melody was treated in school seemed rather atrocious (not the teasing, but the total lack of educational structure and advocacy) and often I felt like Melody’s mother was saying things a kid would want to hear their mother say, not very realistic either. But for what it is, a book written for middle-grade kids about a peer with a physical disability, I think it gives a pretty clear picture what that’s like. How so many ordinary things like putting on clothes or participating in conversations or navigating stairs to get into a building, become obstacles and struggles. And that kids with disabilities have thoughts and feelings and want to be included like everyone else.

The goldfish incident bothered me, though. Probably because I’m a fishkeeper. And why didn’t she explain it to anyone afterwards, when she finally had her talking computer? Sigh.

Similar read, a true story from adult perspective: I Raise My Eyes to Say Yes.

Rating: 3/5
295 pages, 2010

Medicine and What Matters in the End 

by Atul Gawande

     Traditionally, people used to live with their grown children or extended families when they grew old and became incapacitated. Now it\’s far more common (at least here) for the elderly to live in nursing homes or assisted living units. There\’s also the option of in-home hospice care, but I think what few would really want is where many end up in their final moments- holding on until the very end suffering from unpleasant procedures or unconscious, tethered in a hospital bed. This very thoughtful and sobering book looks at all those scenarios, describing the history of how nursing homes and assisted living became a thing, looking at how they\’ve changed over the years, and examining whether those options really are in the best interest of the elderly people they serve. The doctor (I must read more by him!) also looks carefully at what people actually want as the end of their lives draws near- what\’s most important to them, and how can it be achieved. It\’s not always seeking every last treatment that has the smallest chance of a positive outcome. It\’s usually the simple things that begin to matter most- being close to family and friends, maintaining some autonomy, feeling like their lives have had worth . . . There are a lot of poignant examples from people Dr. Gawande has known- his own acquaintances, patients, friends, and finally, in a very personal and moving account, his own father. It\’s difficult to read at times and makes you think about the hard things that nobody really wants to discuss, but points out how important those discussions are before they become crucial. I\’m very glad I read this.

Rating: 4/5             282 pages, 2014
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the Extraordinary Gift of an Ordinary Cat
by David Dosa, M.D.

In spite of it\’s serious subject matter, this book was a light read- I finished it in two days. The author is a doctor who works at a nursing home that provides end of life care, where many of the patients have dementia. This nursing home welcomes animals- there are six cats in residence (also a bird, I think but that didn\’t get much mention). The cats provide comfort and distraction to the residents. One of them, Oscar, caught the attention of visiting family members and staff- he\’s not a very social cat, but when a patient is within a few hours of death, Oscar enters the room and sits on the bed until the end. The doctor was skeptical about this at first, until he started asking details and opinions from those who had seen Oscar performing his vigils. He couldn\’t deny there was something unusual- and very comforting- in the cat\’s behavior. Most of the book is actually stories about patients and their families, especially how they come to terms with later stages of Alzheimer\’s, and make difficult decisions about care and treatment. The cat kind of feels like a side note for most of this. I found it all very thoughtful and compassionate, a good read even though it\’s not mainly about the cat, as the cover might lead you to expect. There is some speculation near the end about how Oscar could actually know when someone was near death- he never appeared to be wrong- and maybe it was from a scenting a chemical given off by cell death. Like how dogs can sniff cancer. There\’s also mention of cases where people have been ill, and their cat sits with them unusually close, for longer periods, sometimes never leaving the bed. Certainly seems like they can sense more than we often give them credit for.

Rating: 3/5              225 pages, 2010

More opinions:
Bookfool
Socrates Book Reviews
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Care\’s Books and Pie

Inside the Extraordinary Mind of an Autistic Savant
by Daniel Tammet

Daniel is a very high-functioning autistic person with savant syndrome- he has an extraordinary ability to recall and compute large numbers- due in large part to his unique way of visualizing them as distinct shapes and colors. He has synesthesia with both numbers and words. And he suffered from epilepsy as a child. This memoir describes how he grew up, isolated in many ways yet enjoying his own sensations and obsessions (especially collecting things) and only when he was older having a desire to interact with peers learning to navigate social interactions and tasks like shopping or finding his way on bus routes. He describes difficulties in school, living in a large family (nine siblings!) and how he calms himself in stressful situations. How he volunteered to work overseas teaching English as a second language, how his aptitude for learning languages works, how he once memorized and recited 22,000 digits of the number pi to break a world record! (It took five hours to make the recitation). And finally, how he discovered that he\’s gay, fell in love, and moved in with his partner, living independently and successfully started a business creating a website to help people learn foreign languages. It\’s astounding. Most of all to me, the very different way in which he visualizes and understands the world. Last year I watched a documentary made about him and I was just blown away. Even the mental games he tells of playing as a child, with numbers, I can\’t really comprehend. Although the writing style is a bit dry, he recalls incidents with a lot of detail- even from a young age. Some of them sad, to see how peers at first shunned him, and teachers misunderstood. His story of overcoming challenges living with autism and finding his way in the world, to living independently with someone he loves and even finding religion, is very inspiring.

Rating: 3/5               226 pages, 2006

more opinions:
Booklust

by Rebecca Skloot

Finished this one yesterday and had to organizing my thoughts around it. It\’s about a black woman from a small town in Virginia (now unincorporated) who died of cancer in the fifties. Samples of her tumor were taken and the cells continued to multiply in the lab indefinitely (usually cell samples loose vitality after a certain number of divisions have occurred). This was a huge thing for not only cancer research- enabling studies that had been difficult before- but also, it turns out, a mind-boggling amount of other types of research. Henrietta\’s cells became known as the HeLa cell line, and were involved in erradicating polio, mapping genes, testing effects of radiation, developing an HPV vaccine and much more. The doctor and researchers who first took and grew the cells in culture gave them away freely to any other researcher who wanted them- free dissemination of knowledge and materials helped science expand. But since then, the cell line has been produced in labs and sold to researchers in staggering quantities as a medical industry. 

During all this time, Henrietta\’s family knew nothing about what happened to their mother\’s cancer cells. Some of them barely knew what a cell was. It was twenty years after her death when they first heard that not only had a sample been taken of her tumor, but that it had been so widely used in medical research, with some huge profits (for some). Meanwhile her family and descendants couldn\’t even afford doctor visits. The author worked very hard to meet the family, hear their story, and educate them on what had happened. She took Henrietta\’s daughter -who had no memory of her own mother- with her on reporting trips to find out what had happened to her sister, Henrietta\’s oldest daughter who had been sent to an institution at a young age, for example. To the labs in John Hopkins where she saw her mother\’s living cells in a vial and under the microscope lens. They read articles that had been written about her mother\’s cancer cells, and found original medical records that finally revealed to the family how Henrietta had been treated during her cancer treatment (she suffered a lot). Needless to say, although it provided a lot of closure and answered tons of questions the daughter and other family members had about their mother\’s life, it also caused them much pain to learn some things. 
This book is so full. It\’s about Henrietta\’s life, and the lives of other poor black people in the forties and fifties, how deplorably they were sometimes treated by the medical community (often viewed as free research subjects). It\’s about how the family is doing fifty years later, their strengths and their struggles. It\’s about the efforts the author had to make to learn all that was put into this book, the personal journey and discoveries. It\’s about how medical research works, pointing out quite clearly that tissue samples are still taken from patients on a regular basis, often without their knowledge or consent, building an immense database of material for researchers to work with. And how it could all fall apart if suddenly the research community had to throw those samples away, or had a dearth of material if people were given the right to refuse their tissues being kept and used in that way. This hit home for me, because not so long ago one of my children was participating in an outpatient program via a hospital. Part of the consent form includes this: 

Use of Biological Samples. During your care at the facility, biological samples . . . might be collected from you for the purposes of your care. Sometimes, after your visit there might be excess or leftover biological samples no longer needed for your care. These samples are usually discarded. However, sometimes these samples might be used for research within our hospitals and occasionally made available to researchers. . . The research can help answer questions about the causes of diseases, how to prevent them, or even how to treat them. Please note that for this kind of research, (i) there might be no practical way to inform you about the details or results of the research…. (ii) generally, no results on tests performed on your samples during the research can be returned to you or entered into your health record. (iii) it is not likely that you will directly benefit from the research, and (iv) there are no plans to compensate or recognize you for use of your samples or any discoveries made during the research. When these samples are used in this manner, your privacy is safeguarded consistent with applicable federal and state privacy laws.

So I knew this, and I was okay with it, because what else am I going to do, refuse treatment? The huge thing here is, back when a sample was taken from Henrietta Lacks, there were no laws in place protecting her privacy- the samples were marked with an abbreviation of her name, and eventually someone leaked the name to a journalist. The terrible thing is the manner in which the family found out- it was literally a shock to them- and then there\’s the great disparity between how much money was generated by growth and sales of the HeLa cells, and the poverty Henrietta\’s family continued to live in. To many people, this doesn\’t seem right. I feel like a lot of these things never should have happened, but then what about all the great strides science made thanks to those very cells. When Henrietta\’s daughter and other family members realized what it meant, how greatly those immortal cancer cells had contributed to science, they were rightfully proud. 
I could say so much more, but really you should read the book. Highly recommended.

 
Rating: 4/5             2010

by Stephanie Brill and Lisa Kenney

The authors are the founder, and the executive director of an organization called Gender Spectrum, dedicated to helping us understand gender diversity. The book has fourteen pages of detailed references from studies, reports, documentaries and interviews. Subtitle: A Handbook for Parents and Professionals Supporting Transgender and Non-Binary Teens. I\’m a parent here. We are trying to be supportive but I have to be honest- it\’s difficult. I won\’t have a lot to say solid about this book because there\’s still many things I don\’t understand, and other things that are too personal to our family right now. When you\’re still learning about something- a very large and complicated something with a ton of pressure to get it right because your child\’s health and well-being is possibly at stake- it\’s hard to even see if the sources I have at hand are accurate or not. How can I judge the material when I don\’t have a lot of background information or experience with it? It took me a long time to get through this book- I read it in pieces over the past few months. Really, that should tell me something perhaps- the last book I struggled through had its own issues, which I\’m kinda blind to while I\’m reading. This one sounded great while I was in the pages- definitions explaining unfamiliar terminology, outlines of adolescent developmental stages, reassurances that you\’re not alone, explanations of the unique stressors gender diverse teens go through, ideas on how to foster resiliency and so on- but when I sit back and think about it all, I feel rather let down. Seems like it touched shallowly on many things but never gave answers to the hard questions or concrete enough details in the examples. Also quite a lot of the material is repetitive so that gets boring, frankly. I was still feeling good about it though until I start looking at other reviews on the big site that\’s swallowing the world, and Goodreads. Now some scrutiny throws doubts on how biased the book might be, how lacking in critical information or discussion of the negatives. I received this book from a facilitator at a parent support workshop I attended. I\’m going to pass it on to another parent- and continue looking for more material to read.

Rating: 3/5               336 pages, 2016

More Poetry and Prose by Nurses
edited by Cortney Davis and Judy Schaefer

This was among a box of books my sister once gave to me (she\’s a nurse). It\’s a collection of poetry, short stories and a few essays written from personal experiences. (There\’s a prior volume called Between the Heartbeats). As I\’m not terribly keen on poetry, and the book has more than twenty authors, this was a rather uneven read for me. Some pieces just didn\’t speak to me at all, or were difficult for me to connect to. Others were downright disturbing, or very very sad. Especially of innocent people suffering, stricken by illness or worse injured by outright cruelty. The stories and poems span a wide range of nursing experiences- from students practicing their technique to men or women years into the job, or others looking back after a long career. There are nurses in the usual hospital setting I would expect, but also many stories from remote areas in poor countries, from refugee camps, from the front lines in battle zones. There are stories of frustration and burnout, of exhaustion and misunderstandings. And also those of tenderness, of compassion and deep caring. Quite a few tell of a particular patient or experience that had a profound impact on an individual nurse. I skimmed over a few, puzzled over others, but found many resonating with sensitivity or tense with discomfort, letting me glimpse what it\’s like to do such work.

Several that really struck me: \”The Color of Blood\” by Victoria May Collett- how a scrub nurse experiences working alongside a renowned heart surgeon- the thrill and stress and strain. \”Water Story\” a poem by Cortney Davis. \”We Do Abortions Here\” by Sallie Tisdale- the subject is exactly that. And these lines from \”What Nurses Do: the Marriage of Suffering and Healing\”:  The rhythm of a heart repeats itself like vows / in a chapel full of light, but we are gathered / here because this man\’s heart choked after forty years /  . . . and now something as old as love / must be the pencil that helps the heart write / its good-byes across our screen.

Rating: 3/5                           269 pages, 2003

a PTSD Love Story
by Mac McClelland

The author is a human rights reporter who witnessed some terrible things. Many difficult assignments to disaster zones, culminating in travel to Haiti after the devastating 2010 earthquake where her particular focus was to investigate the prevalence of rape among survivors in tent camps. What she found was horrific. She went into shock, had a breakdown and upon returning home, found she could not escape flashbacks of things she\’d seen, panic attacks, outbursts of anger or self-loathing, and frightening dissociation- not being able to feel parts of her body at all. She had post traumatic stress disorder, and describes years of struggling to heal, with the help of a therapist, many different techniques to strengthen her mind and body (mindfulness, yoga, self-defense class etc, occasionally medication though she really shied away from that avenue). Through it all she was supported by the love of her boyfriend- a French soldier she had met briefly while on assignment, it became a long-distance relationship and eventually they tried living together. Wow, that that sounded difficult.

McClelland thankfully does not share details about the atrocities she witnessed that brought on her PTSD, but she is frank about the effects it had on her everyday life, in particular her sex life. Her methods of dealing with this are disturbing to read (or were for me) and honestly could be triggering for many – please be advised if you are interested in reading this book you might want to avoid it if you have suffered from sexual abuse or have thoughts of self harm. McClelland received a lot of criticism for what she wrote (initially as an article) but personally, I see her as an intelligent, sensitive and brave woman- she shared so honestly what it is like to live with her condition. Also shares some research she did into PTSD, especially among war veterans and how it affects their families as well (many spouses and children end up with PTSD themselves, from living alongside someone with severe symptoms). A lot of the book seems to drag on with her pain, confusion and exasperation that her symptoms never seem to let up, but in the final twenty pages there is some hope- the coping skills she has learned are becoming easier to employ, her episodes are becoming less frequent, she is more accepting of herself and of the love her husband gives her.

There\’s so much more to this book- things from her past, difficulties her partner also went through, strength of friendships, struggles with her work- but I can\’t possibly mention it all. I must say, it was a very difficult read. I had to put it down several times. It also clarified for me- I understand a little better some things I read in Hi, Anxiety that baffled me at first. Like the psychological need some people feel to face pain, fear and aggression, in order to heal.

I borrowed this book from the public library. Found it browsing the mental health section, it just caught my eye.

Rating: 4/5                          308 pages, 2015

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All books reviewed on this site are owned by me, or borrowed from the public library. Exceptions are a very occasional review copy sent to me by a publisher or author, as noted. Receiving a book does not influence my opinion or evaluation of it

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