A Long Story of Trauma, Good Luck and Suspense – Page 5

Model Patient

The Book of the Week is “Model Patient” by Karen Duffy, published in 2007. In this ebook, Duffy describes her mid to late 1990’s bout with sarcoidosis, a life-threatening illness that is difficult to diagnose.

A prolonged, severe headache was the first symptom. Numerous tests revealed that she had a growing lesion on her brain and spinal cord. This produced numbness and paralysis in various parts of her body, including her limbs. It took months before she saw a doctor who recommended treatment of steroids and chemotherapy. She writes, “I’d lost the playbook to my life. I had no idea what to do.”

Despite the psychological stress brought on by her inability to continue modeling and working as an on-camera reporter for MTV, she did her darndest to remain positive. Fittingly, she happens to have a facial feature known as “risorius of Santorini”– her cheek muscles form a natural smile, without her consciously trying to do so.

Prior to her entertainment career, Duffy had worked as a recreational therapist at a nursing home. Her job was to improve the psychological states of the residents. She continued to try to volunteer once a week there after she got sick.

Read the book to learn other strategies Duffy used to cope with her illness.

The Cure

The Book of the Week is “The Cure” by Geeta Anand, published in 2008. This ebook tells the emotional, suspenseful story of how a family coped with three disabled children, two of whom were suffering from a genetic disease for which a cure is yet to be found.

In the late 1990’s, John Crowley’s daughter and son were both diagnosed with Pompe disease, a muscle disorder. Patients, with varying severity, “have imperfectly produced acid alpha-glucosidase enzyme” which results in paralysis, obstructed breathing, and, if left untreated, death before the age of five.

Even though Crowley possessed the personality, talents, skills, education and privileged background that one would think would allow him access to a life-saving enzyme to save his children, he had to face numerous obstacles. The father naturally fell into the role of entrepreneur to do so. His wife provided invaluable emotional support and around-the-clock care of the children with the help of nurses; not to mention the running of the household.

Nevertheless, lots of genetic and environmental luck determines whether patients become fully cured and/or whether the quality of their lives improves significantly, or whether they die– even when they are sufficiently fortunate to take part in a trial of a new life-saving medicine. Death would be inevitable without the medicine.

Every patient is different. There are many different criteria the U.S. Food and Drug Administration considers when deciding whether to approve particular medical products for sale. Money plays a major part in whether a new product ever sees the light of day. A young medical research company raises funds through venture capitalists, and because the whole operation carries extremely high risks, if the company achieves success– the rewards, fittingly, are also extremely high.

Scientists must do years of preclinical testing on animals to make sure a new medicine works sufficiently well before even considering administering it to humans. In the United States, possible deadly consequences and possible future litigation motivate the scientists to act with integrity by performing tightly controlled experiments, so as not to have to fudge research results.

Another aspect of drug development, is avoiding a conflict of interest such as that in Crowley’s situation. He played a pivotal role in the race to bring a medicine to market; it appeared he was doing it to get the medicine for his own children.

The estimated annual expense of the enzyme for each child was $200,000, and $1 million for all future annual medical expenses, including the enzyme, plus wheelchairs, nurses, ventilators, catheters, etc.

Read the book to learn of the Crowley family’s experiences with American biotechnology.

Alive

The Book of the Week is “Alive: The Story of the Andes Survivors” by Piers Paul Read, published in 1974. This paperback tells the suspenseful true story of the aftermath of a plane crash in the Andes Mountains in Chile.

The small plane contained mostly strapping teenage boys who were members of a Uruguayan rugby team. Read the book to learn how the hardiest victims survived sub-freezing temperatures in the snow for a prolonged period– as they were trapped in the mountains– despite the fact that they had become chain-smokers.

To the Heart of the Nile

The Book of the Week is “To the Heart of the Nile” by Pat Shipman, published in 2004. In the 1840’s, when a little girl, later named Florence, was orphaned by revolution in the land that is now Hungary, she was sent to live in a harem.

By a strange twist of fate, Florence, with an Englishman, Sam, (with a retinue of servants) ended up going on expeditions in what is now Egypt and the Sudan to find the sources of the Nile, and stop the slave trade. They “made detailed observations on the climate, the terrain, the people, the animals and the plants,” all the while braving disease, near-starvation and tribal warfare. That last life-threatening condition required delicate negotiations with a tribal chief.

On one occasion, Sam gamed the situation correctly. He boldly “ordered his headman to raise the Union Jack… Sam asked these delegates [officials of the enemy tribes] how they dared to invade a country [the Sudan] under the protection of the British flag.” They obeyed his order to evacuate the area. The tribal chief who was allied with Sam “was awestruck by the power of Sam’s magical flag and… rewarded Sam with huge quantities of [smuggled] ivory.”

Sam refused to accept the ivory, as he was disinclined to tarnish his reputation with criminal and morally reprehensible pursuits. He was more interested in exploration and annexing the Sudan for the United Kingdom.

Read the book to the learn the outcomes of Sam’s and Florence’s adventures.

The Birthday Party

The Book of the Week is “The Birthday Party” by Stanley N. Alpert, published in 2008. This is the personal account of one man’s harrowing experience of being kidnapped off the streets of New York City by a group of dangerous criminals at their whim. On his birthday.

Alpert’s nerdy personality made him an easy target. Ironically, however, he had the street smarts that allowed him to maximize his chances of survival. Read the book to learn how this suspenseful, emotional cautionary tale played out.

Against Medical Advice

The Book of the Week is “Against Medical Advice” by James Patterson and Hal Friedman, published in 2008. This book discusses the struggle of a teenage boy (Friedman’s son) with various psychological disorders; obsessive-compulsive disorder and Tourette’s syndrome among them.

Cory tried to live a normal life, but by his teen years, he had fallen woefully behind socially and educationally. He had friends, but they were misfits like himself. At one point, he tried checking into an institution but found his life was not improving. However, the law required him to stay there a certain number of days, unless his parents signed a document stating he was refusing to accept the judgement of professionals about his treatment.

A last-ditch effort saw Cory enter an extremely radical program– a survival camp, of sorts– in which kids were forced to cooperate with each other in a harsh environment, or literally face death.

Read the book to learn how Cory fared.

Time on Fire

The Book of the Week is “Time On Fire” by Evan Handler, published in 1997. The author, a Broadway actor, tells his readers how he survived a five-year bout with myelogenous leukemia in the early 1990’s. His condition necessitated various extreme treatments from which, at that time, fewer than half of patients emerged alive. He details them, good and bad, he received from various medical facilities, whose names he mentions. One action he took, among others, was to get a private hospital room so as to minimize his stress level. One should spare no expense when one is fighting for one’s life. This intense survival story was inspiring, rather than depressing.

Asking for Trouble

The Book of the Week is “Asking for Trouble” by Donald Woods, published in 1981. This book’s author (miraculously) lived to tell of his experiences publishing an anti-apartheid newspaper in South Africa under apartheid in the 1960’s and 1970’s.

South Africa’s then-leader allowed Woods’ newspaper to remain in existence only to maintain the public relations charade, that the country allowed free speech on the subject of its treatment of certain of its citizens. Nevertheless, Woods lived under threat of death all the time, from his numerous enemies. His family was also in danger. He described one incident in which his children naively tried on T-shirts that had come in the mail from what appeared to be a politically friendly source. The shirts contained the acidic chemical ninhydrin, which burned their skin.

Read the book to learn what dire action Woods eventually had to take to save his own life.

Colors of the Mountain

The Book of the Week is “Colors of the Mountain” by Da Chen. This is the autobiography of someone growing up in China during the middle and later years of the Cultural Revolution under Communist dictator Mao Tse Tung. Since Da, born in 1962, was the youngest of several brothers and sisters at a time when Mao was reversing China’s education policy toward one of competitive college-entrance exams, Da became his family’s only hope for a better life.

The siblings unfortunately, were doomed to a life of backbreaking toil on the farm, under Mao’s reign. Da, on the other hand, was provided with the opportunity to take three days of the extremely extensive “regurgitation” exams. He rose to the occasion, studying with his friend for hours and hours every day for months on end.

His friend, who smoked big, fat cigars, was a nonchalant sort under much less pressure. He could afford to goof off. For, the friend’s family owned a lucrative tobacco farm, and failing his exam would mean merely entering the family business, which was not such a bad consequence. That is what happened to the friend.

Da’s hard work paid off. He achieved the highest test scores in his region, an exceptional triumph, since he was from a rural area where students received test preparation inferior to that in urban areas. He had heard that learning English was very important if one wanted to study abroad. However, it was rumored to be very difficult for Chinese people to learn to pronounce English with an accent that was comprehensible to people in English-speaking countries. But learning English was important for increasing one’s options for a better life. Da was treated to a tuition-free university education and learned English. Read the book to learn how he fared thereafter.

To Kill A Tiger

The Book of the Week is the memoir, “To Kill a Tiger” by Jid Lee, published in 2010. The author describes the extreme hardships (“tigers”) she endured growing up, due to the culture of her generation in South Korea.

After WWII, North Korean dictator Syngman Rhee and South Korean dictator Kim Il Sung both conducted witchhunts to root out political dissidents, torturing and killing them. Kim was aided by the U.S. in his oppressive endeavors. The author’s father engaged in anti-government, pro-socialist activities as a college student, and as a consequence, was: expelled from a prestigious university, tortured, imprisoned and forced to accept a lowly position teaching instead of “selling out” to become a high government official. Yes, this happened in South Korea.

The education system was based on rote learning. The author, born in 1955, unfortunately had trouble with memorization, and therefore did poorly in school. Her two older brothers tutored her extensively to help her pass the admissions test that allowed her to attend a decent high school. However, she failed her college admissions test– two eight-hour exam days– twice, and had to settle for a second-tier college a year later than her peers.

Since she was female, she was expected to help her mother with all the household chores in addition to attending school and studying, which meant she labored sixteen hours a day starting in middle school. In her male-dominated world, during her teenage years, stress and anger were relieved through abuse heaped upon her by her father, older brothers, grandmother and mother. She in turn rebelliously fought back against her mother and was mean to her younger sister.

There was extreme pressure for both genders to attend prestigious schools but the educational elitism for females merely served the purpose of “marrying well.” After college graduation, the daughters were supposed to enter into marriages arranged by their fathers, and be good wives and mothers. Read the book to learn what has become of the author.