Book: Sick Girl

Author: Amy Silverstein

Type of Book: Memoir

Why Did I Read This Book: I find stories of medical drama to be compelling reading, but to be honest, I bought this because I was distracted and reaching for a book about a Munchhausen by Proxy survivor and grabbed this instead and did not notice until later.

Availability: Published in 2007 by Grove Press, you can get a copy here:

Comments: I frequently buy books in error or in haste but this is a book I think I was supposed to read, in a mystical fate sort of way. I’ve had health issues before and have become miserably depressed because of them. I also, despite my time as a comparatively mildly sick girl, still neglect my health something fierce. Reading this book made me realize what a whining sack of crap I can be at times (relativism here – all suffering is relative, truly, but sometimes reading other people’s pain can really help you put your own into perspective). It also made me take some steps to take better care of myself and my spouse. I don’t like being that person, the one is who inspired. It seems cliched behavior, in a sense, to be that breathless and impressionable. I can go so far as to say that I resent being inspired. But this book did inspire me as it infuriated and upset me.

So strong was my reaction to Silverstein’s memoir of her heart transplant, I had a morbid need to make sure she is still alive. She is, but in discovering this, I found online jerkwaddery of the worst sort. Silverstein is beyond a doubt the model heart transplant patient. The average amount of time allotted to a heart transplant recipient is around a decade and Silverstein is, by the timeline in the book, looking at year 21. She is a difficult woman and patient, in that she questions doctors’ advice, knowledge, intent and demeanor, but she also never misses the numerous pills she must take, she eats an exemplary diet, does not drink, and keeps herself in good physical condition by running. But she also makes no apology for her anger and at times irrational outbursts. She speaks openly of her odd and visceral reactions to something as mild as taking Prednisone. She does not hide her bafflement, her sadness and her unreasoning fury and I loved her for it.

But some walked away angry after reading this memoir of a woman showing her reality and rising above some of the worst pain and misery a person can endure. They said that because Silverstein expressed the frustration and pain that comes from being a transplant recipient, she might in some way discourage people from donating their organs. They thought she seemed too unappreciative. Evidently to be worthy of a heart transplant, doing everything to stay alive is not enough. Evidently one must be slavishly grateful to the point that one never expresses a negative thought. Who knew? I tell you what. I’m a donor and I want my organs, should I die and they be worth a dime, to go to someone like Silverstein, someone who may be irascible at times but willing to do whatever she must to make the most of my sacrifice.

Silverstein, who was initially told she had a virus in her heart in her early 20s, documents her time in the bowels of the medical system, a system that is not wholly honest, is willing to shunt off a patient to another doctor when she asks questions and one that is not willing to be open about what a patient can expect. One doctor repeatedly refused to tell Silverstein if there was any way she could manage to give birth to a child. He told her the truth later, that she should not do it, and gave a patronizing excuse as to why he saw fit to deny her this opinion for years, as if she was a child and needed to be shielded from the truth of her life.

The worst parts are the medical mishaps she lived through. Her primary care physician missed the early signs of her condition and responded to her chronically low blood pressure by telling her to eat more salt. A year later, she was on the transplant list. Silverstein experienced a heart specialist who likely would have killed her had she continued listening to his advice. He told her to get up daily and move around while she was waiting for a heart so that she would be in better shape when she recovered. The problem with this advice is that any exertion led Silverstein to v-fib, requiring her to be shocked with a defibrillator in order to get her heart beat back under control. After a couple of days of being subject to the paddles on her chest every time she got out of bed and yet still being told she must continue getting up, Silverstein simply did what she had to do – she stayed in bed against doctors orders, sometimes not even changing her underwear or brushing her hair because the exertion was such a strain on her heart.

Though her family was close and good to her, though she had a loyal fiance who stood by her side through it all, Silverstein writes of the fear, the loneliness, and the sense of otherness that a sick person feels. Moreover, when she interacted with her fellow transplant patients, the sense of otherness was still acute. She followed the rules – she took her meds as required, immunosuppresive meds that made a pregnancy risky, so she adopteda little boy. She eschewed alcohol. She kept up with her health carefully while watching women in similar straits have children and require second hearts, drink wine with meals and die young. Even as stubborn and brave as she is, something many of us dream of doing – running with the bulls in Pamplona – became akin to a torture march for Silverstein. Even watching her adored child play soccer could evoke a sense of alienation and bitterness for what her body had dealt her.

But she still got up every day and did what she had to do. Even when she was so tired she wanted to lie down and just die.

There were moments in the book when I think perhaps Silverstein did not recognize her grace. Her husband is very deferential to doctors and can become disappointed when she becomes angry and rude with doctors who frustrate her. She also described at times too how once she had her transplant and seemed healthy, her husband and others tired of knowing about her condition and the impact it had on her. I don’t know how I would deal with that, the sense that no matter what, I may not have someone solidly in my psychological corner. But she sees her husband, who is actually mostly described in glowing terms in the book, as a counterbalance to her understandable anger and fatigue. In the end, she cuts people a lot more slack than she seems to give herself credit for.

The scene when Amy realized she could not have children and began to sob in a cab bothered me to no end. Her father and stepmother were in the cab with her and her father declared, perhaps under stress, that he did not have to listen to it all, and got out of the cab when it came to a light, his flight forcing her stepmother to leave the cab, too. Silverstein does not carry the anger and resentment such a scene would have imbued in me. When it is later revealed Silverstein had a genetic heart malfunction, a condition is looks like might be plaguing her sister, and not the virus she was initially told, she told her stepmother. Her stepmother’s response was to shut down, to refuse to hear it, to insist it was a virus and Amy was wrong. Again, I have no idea how I would have dealt with this but I suspect anger instead of retreat would have been my path.

I, like many others, thought that once a heart patient gets a transplant, their troubles are over if they don’t reject their heart. I had no idea the number of biopsies they must endure, the number of doctor appointments for the rest of their lives, the constant fear of conditions transplant patients develop. The description of how the severed cardiac nerves in a transplant patient results in delayed heart reaction stunned me in its obviousness and as something I doubt anyone without a heart transplant ever considers. For example, if someone startles you, you feel the cardiac reaction of increased heart beat and quickness of breath minutes later because all you have left to control such reactions is your adrenal system which does not respond as quickly as your cardiac nerves.

But the worst of all of Silverstein’s tale is that the baffled medical community seems to cloak ignorance, understandable though it is, as arrogance. I felt my own blood pressure rise as I read Silverstein’s attempts to maintain her sense of dignity while placing her life in the hands of men who hated admitting they did not have all the answers. When her condition baffled a doctor who had seen her many times, she watched as the curtain went down over his face when he was confronted with the inexplicable. Because her body did not respond as it should (actually, this was good – her body unexpectedly and without known cause reversed artery damage), the doctor’s friendly demeanor left him and Amy felt abandoned as she watched him leave the room.

This was a compelling, frank, naked book. It was not an easy read at times. But I am glad I read it, mistake though it initially seemed to be. This raw memoir of a woman who is happy to be alive but not always grateful for what life entails discusses deep issues of what it means to be sick, how constant pain and fear will affect even the strongest will and how we as a society need to ask ourselves why we are so sold on the cheap, easy inspiration of Hallmark Movies of the Week that we want the chronically ill to be mindlessly grateful for every moment of peace they achieve.