Books

7 Chronic Illness Memoirs That Everyone Should Read

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According to government data, forty percent of Americans struggle with a chronic disease. Most of those chronic illnesses are invisible to other people because the symptoms are internal. None of us walk around with a sign around our neck announcing that “I have diabetes,” or “I’m struggling with anxiety,” or “I have Lyme Disease.” Instead, people with chronic illness may sit at the desk next to us, or share the subway with us, or do their grocery shopping at the same time as we do. 

We have a tendency to separate ourselves from others’ suffering either by assuming that “it can’t happen to us,” or by assuming that one has to be some kind of heroic figure to live with illness. Both of those assumptions are myths, and in these works, readers have an opportunity to discover that, among other truths, people react to having chronic illness much the same as people do to any situation: as human beings. 

  • The cover of the book A Mind Unraveled

    A Mind Unraveled

    A Memoir

    I read A Mind Unraveled into the wee hours of the morning, compelled to keep going by a narrative that read like a horror story. I was terrified by Eichenwald’s story, which resembled those tales of mad scientists run amok. In his case, however, the out-of-control scientists were his doctors, whose slap-dash treatment for Eichenwald’s epilepsy nearly killed him. To call what happened to him “harrowing” feels inadequate in describing the abominable care he received. When very early in the narrative, Eichenwald’s first neurologist lectures the teenager that he should be grateful he has epilepsy because “there are children dying from cancer,” readers realize that he is not going to get the care that he needs. 

    Epilepsy is a general term used to describe a neurological set of conditions that lead to seizures, which themselves can be broken down into various types. The nature of the seizure may reveal information about which part of the brain is affected and what doctors need to treat. But the image that non-sufferers have of epileptic seizures — in which the body flails without control and patients are in danger of swallowing their tongues — is based as much on myth as fact. For instance, one cannot swallow one’s tongue; thus the “common knowledge” that one should jam something in a patient’s mouth as a precaution actually causes more injury than it prevents. Because epilepsy has been so poorly understood, many people are afraid of epileptic seizures and treat those who suffer from them as if they were social pariahs. When Eichenwald is first diagnosed, his first neurologist tells him to give up all hope of pursuing any of his life’s ambitions because he won’t be able to tolerate stress (and then tells him not to feel sorry for himself because he doesn’t have cancer). 

    Eichenwald details how other people’s fears of his condition had an impact on the level of care that he received. Reading about their reactions and the lengths to which some people went in an effort to remove him from the public led me to wonder how this could have happened in modern-day America. How could a young man with a neurological condition have been treated as such a threat by educated people who were driven by fear? 

    Reading A Mind Unraveled had a profound effect on me. I was reminded that people are most terrified of those things they cannot explain or understand, and that, in response to those fears, they will behave in reprehensible ways toward other human beings. Until Eichenwald finds the neurologist who is not afraid of epilepsy, he is treated by a series of charlatans and quacks who substituted claims to authority over scientific data. The fact that he received such care in the recent past is to be reminded that substituting fear for thought always produces disastrous results. 

     
  • The cover of the book My Age of Anxiety

    My Age of Anxiety

    Fear, Hope, Dread, and the Search for Peace of Mind

    I remember the first time I went through what would later be known as a “panic attack.” I was nine. Something had happened between a friend and me, and my fear was that once the story was spread, I wouldn’t have any friends left. I remember the anxiety lasting nearly two full weeks, each day punctuated by periods of panic attacks that would recede for a little while only to occur all over again. Scott Stossel opens his study of anxiety with an anecdote about his wedding day, where he stood at the altar in a full-blown panic attack, and details his mortification as his physical symptoms became apparent to the 300 guests in the church. 

    The symptoms of panic disorder as described by Stossel include flushing, sweating, tingling sensations, numbness, vertigo, nausea and vomiting, shaking limbs, and chest pain. Because its symptoms feel as if one might be having a heart attack or a stroke, many people are first diagnosed with panic disorder after they’ve gone to the emergency room to seek relief. It can get complicated from there. As Stossel delves deeper into panic disorder and its relationship to anxiety—for instance, is panic disorder a form of anxiety or a different malady—and then details the psychiatric debate around the condition of “anxiety,” readers realize that various types of anxiety, which include such conditions as Obsessive-Compulsive Disorder, PTSD, agoraphobia, and a host of others, can share many symptoms with depression, so a correct diagnosis may take a while when a person first seeks help. And depression and anxiety can share symptoms because both diseases are located in the brain’s production of neurotransmitters, including norepinephrine and serotonin. Brain imaging of those with anxiety reveal structural changes in the brain. 

    As anyone with anxiety can tell you, while some anxieties may of limited duration, many of them are chronic conditions that require any number of treatments. Some folks respond well to talk therapy, where they are taught techniques for aborting an incipient attack. For others, new classes of medications provide a suppression of symptoms of anxiety, but may also involve bothersome side effects. Some find relief in daily exercise, meditation, yoga, or other stress-relieving activities, although it is crucial to remember that anxiety and panic are not merely “stress.” For many sufferers, the best solution is prophylactic medications in combination with either therapy or participation in behavior change. A person with chronic anxiety suffers very real physical symptoms, which are best likened to the “fight or flight” instinct that protected us in prehistoric days. In “fight or flight,” which you might experience after narrowly avoiding a car accident or rescuing a child from a dangerous situation, adrenaline primes the body for response but also causes one to feel “weak in the knees” and the heart to race. For someone with chronic anxiety, fight or flight instincts may be triggered several times a day, with no apparent stimulus. Left untreated, it has led people to take their own lives. 

    While insurance companies have been slow to treat mental illness the same as physical illness (and some argue that mental illness is physical illness), President Obama’s Affordable Care Act mandated that insurance companies must pay for both mental health and substance abuse treatment. Despite this fact, many still regard mental health issues as some kind of “moral failing” on the part of the sufferer rather than recognizing that brain chemistry, just like the chemistry that activates our heart and lungs, is not subject to moral judgments. The Age of Anxiety is both a personal account of Stossel’s illness, but also an essential guide for anyone who is struggling with any form of anxiety. 

    If you need immediate help with anxiety or any other mental health concerns, 24-hour assistance is available at National Suicide Prevention Lifeline, 1-800-273-TALK (8255) or go to your nearest local Emergency Room. For more information, go to MentalHealth.gov.

     
  • The cover of the book The Twenty-Seventh Letter of the Alphabet

    The Twenty-Seventh Letter of the Alphabet

    Putting a story into the shape of a narrative gives it form, shifting memories or creative vignettes into an order that allows others to read it. But, as many writers have noted, certain stories resist narrative because the stories themselves don’t make sense. In Kim Adrian’s The Twenty-Seventh Letter of the Alphabet, she seeks to make sense of her childhood and beyond in which her mother’s chronic mental illness made alien any sense of normalcy. Adrian is also made aware that much of her mother’s struggles are related to her mother’s childhood, when her father raped her on a regular basis for years and no one intervened. 

    Adrian’s unique approach to narrating a story that resists order is to transform it into glossary entries. The story is told through an alphabetical list of terms—from Abecedarian to Zigzag—in which she jigsaws together the bits and pieces of her experiences in order to create this beautiful reckoning. Some of the entries are long and provide pages of narrative, others are brief like a punch. Here is the entry for “Guilt:” 

    I can feel it sometimes at the back of my neck or underneath my sternum. My mother’s unhappiness is inside me. It’s pain in my bones. Salt in my blood. 

     
  • The cover of the book Sick

    Sick

    A memoir

    One of the big mysteries that hangs over Sick is whether or not it can be established just when Porochista Khakpour was bitten by the tick that gave her Lyme Disease. While the disease was not identified by medical personnel until she was in her twenties, it is likely that she had suffered with the  symptoms since she was a small child. For a long time, therefore, Khakpour occupied nebulous territory. She exhibited symptoms of illness, but because the doctors who treated her could not identify what was ailing her, they either dismissed her or they prescribed drugs to treat her symptoms but which could do nothing to treat the underlying problem. 

    In certain parts of the country, Lyme Disease is epidemic due to the presence of Deer Ticks, its main carrier. But in those parts of the country where it doesn’t occur, doctors regard a patient identifying herself as having Lyme Disease as elaborate fakers who are seeking drugs. Reading about these encounters is infuriating. But in Sick, Khakpour also writes about how her understandable fatalism pushed her to self-destructive behavior, and how some of the drugs prescribed to treat her symptoms became problematic when her physical dependencies turned into addictions. 

    Sick is not a self-aggrandizing chronicle of noble suffering. Rather, it offers a very human response to the frustration Khakpour felt with her body and with medical personnel who made her defend her right to treatment. It is the story of a girl and a woman who used writing as a means of distracting herself from her pain. Her detailing of the ways that illness messes with one’s sense of self makes this an essential book about illness and the desire to find a way to heal all of the parts of the whole self that are affected by physical disease.  

     
  • The cover of the book Waiting for Eden

    Waiting for Eden

    A novel

    Elliot Ackerman has written two previous novels that take place in the countries where America is still at war. Ackerman served five tours as a Marine in Iraq and Afghanistan, and his fiction about the wars is harrowing and deeply humane. In Waiting for Eden, Ackerman gives readers a heartbreaking novel about the young men who go off to war, and their young wives who wait for them to return. 

    In previous wars, men who lost legs or suffered severe head injuries on the battlefield most often died. But in the most recent wars, these grave insults to a human body have become survivable due to techniques available to battlefield medics and life-saving surgeries performed at combat hospitals. Eden is one such injured man. He was riding in a Humvee in the Hamlin Valley in Iraq when it hit a pressure plate, setting off an explosion that killed all of the occupants, except for Eden. His story is narrated by the man who sat next to Eden, his best friend, whose ghostly presence makes him an omniscient narrator. 

    Doctors were able to save most of Eden’s body. The narrator won’t list his injuries, but the former 220-pound Marine now weighs 70 pounds due to various amputations. Despite the head injury that has locked Eden in a coma, his wife, Mary, shows up at his hospital bed every day in order to keep him company. Readers are privy to Eden’s thoughts, especially the fears and anger the war has imprinted upon him. But as the narration progresses, readers become aware that a huge secret exists between Mary and Eden. Its eventual revelation will make clear why Mary will make a fateful decision as Eden swims up toward consciousness. Ackerman challenges readers who feel certain that they would know what to do when faced with a loved one’s long-term illness and injury. 

     
  • The cover of the book A Really Good Day

    A Really Good Day

    How Microdosing Made a Mega Difference in My Mood, My Marriage, and My Life

    I’ll be honest: when I saw that Ayelet Waldman had written a book about her experiences with using microdoses of LSD, my first thought was that it takes a lot of white privilege to be able to write a book about using a Schedule 1 drug. Waldman acknowledges this issue right from the beginning. In further chapters, she reveals that she is a former attorney, and that she used to represent clients who faced long sentences for offenses involving tiny amounts of prohibited substances. She not only acknowledges her racial privilege, she presents a history of how the criminalization of drugs has resulted in the disproportional prosecution, imprisonment, and even execution of people of color. 

    A microdose, as she explains, is “a subtherapeutic dose of a drug administered at a quantity low enough to elicit no adverse side effects yet high enough for a measurable cellular response.” Waldman opts to try LSD in this way after years of dealing with the impact of Bipolar  Disorder, which she describes as akin to being “held hostage by the vagaries of mood.” In her introduction, she describes experiences with mental illness that extend back as far as she can remember. It wasn’t until law school that she first sought help, and thus began the long travail familiar to anyone who have lived with mental illness or love someone who has: trying to find a mental health professional who is able to provide the correct therapy. Whether relief comes from medication, talk therapy, or some combination of therapies, finding what works often requires a willingness to keep searching for the therapist who can help providethe correct drug at the correct dosage, which may need to be adjusted overtime. 

    So, Waldman’s decision to experience a month of following a protocol for LSD microdosing that she describes, makes sense. Many people with chronic physical illnesses have agreed to participate in drug trials to test medication that may be effective for them. Here, Waldman sets herself up as a one-woman trial, following the protocol described in the book and then writing a diary entry for each day that describes how she reacted. Along with her daily information, Waldman looks at a number of topics including racial disparities in drug sentencing and the history of drug enforcement. A great read. 

     
  • The cover of the book Let's Take the Long Way Home

    Let's Take the Long Way Home

    A Memoir of Friendship

    I read this book in one sitting, getting up only to fix a cup of tea or let the dogs out. Many times while reading, I wanted to call one of my closest friends to read her passages in which Gail and her best friend, writer Caroline Knapp, took their dogs out for long walks in the woods near their houses. Let’s Take the Long Way Home could be included on any number of “best of” lists: best books about illness, best books about grief, best books about the love of animals, best books about women’s friendships. 

    Readers know from the beginning that Caroline Knapp will die at the age of 42 from lung cancer, even more so if they are fans of her work, as I am, especially her brilliant Appetites, which is about the way addictions work in women’s lives. And while her impending loss is never hidden from readers, it is easy to forget that it is coming as Caldwell weaves a warm tale of what it’s like to love your best friend as much as your own life. She and Knapp were adventurers, women who rowed every morning on the Charles River in Cambridge, and took long walks with big, young dogs who needed lots of exercise, all while keeping each other company before retreating to their work spaces to write. Caldwell was the Boston Globe’s book critic, while Knapp wrote essays for the Boston Phoenix. 

    The stereotype of friendships between women is that we can’t really be friends. We’re too jealous of each other, too judgmental of each other’s lives, too wrapped up in our (heterosexual) love relationships to nurture a friendship. Caldwell demolishes all of those ridiculous ideas while also building a memoir in which the two friends did have moments of anger with one another. 

    Its inclusion on this list is about the light it shines on the friends and caretakers of those with chronic illness. While the person who is experiencing the life-changing events of illness may have a particular story to share, what of the person who provides comfort to the patient? How can a friend insert herself into such a story without making it all about “me?” In the capable hands of Caldwell, the story never descends to one of maudlin self-pity. Here, Caldwell never loses sight of Knapp and how their friendship built an indestructible bridge that both of them depended on to cross life’s dangerous waters.