"What did it feel like to be a different person?"
In the time following her diagnosis and start to her road to recovery, Susannah Cahalan explains that this question is one that is impossible to answer with conviction because, during that time, she "didn't have any real self-awareness that allowed [her] the luxury of contemplation" (176). Cahalan's first reintroduction to the world, namely Stephen's family, proves shocking to those who were not fully aware of what had happened while she was in the hospital. Stephen's sisters do their best not to gawk and try to hide their nervousness around her:
"My hair was unkempt, and the angry red bald spot from the biopsy was exposed, complete with metal staples still suturing my skin together. Yellow crust covered my eyelids. I walked unsteadily, like a sleepwalker with my arms outstretched and stiff and my eyes open but unfocused. At the time, I knew that I was not quite myself, but I had no clue how jolting my altered appearance must have been to those who had known me before" (177).
Cahalan explains that she often questioned if she would always remain in that state, mental and physical. She describes the homecoming of her younger brother, James, as an extremely emotional one. While Cahalan was in the hospital, her younger brother had was finishing his freshman year at the University of Pittsburgh. When James arrives home, he is not prepared for the state in which he finds his sister:
"For me, it was an equally powerful encounter. He had always been my kid brother, but now he had become a man overnight, complete with stubble and broad shoulders. He looked at me with such a devastating mixture of surprise and sympathy that I almost fell to my knees. It wasn't until I saw the look on his face that I realized how sick I still was. Perhaps it was the closeness between siblings that brought this realization to the fore, or maybe it was because I had always considered myself an older custodian to baby James, and now the roles were clearly reversed" (179).
While Cahalan does make significant progress during her time after her hospital discharge, she describes the difficulty of her recovery. Every week, her mother spends an hours sorting out the medication that Cahalan must take, which, she says, is complicated because the doses are complicated and always changing. She explains that her dependence on her medication indicates her inability to be independent, and so she often refuses to take her pills. The frustrating time she spends at her mother's house causes her to associate her feelings of anger and frustration with her mother, and their relationship suffers.
During the second of two professional mental and health assessments, Cahalan tells her doctor that she believes her most pressing problems to be "Problems with concentration. With my memory. Finding the right words" (193). Her doctor finds this reassuring because Cahalan had "defined exactly what was wrong with [her]. Often those with neurological issues cannot really identify what is the matter. They don't have the self-awareness to understand that they are ill" (193). Cahalan's ability to identify her "weaknesses was a strength" (193). Cahalan's doctor prescribes group cognitive rehabilitation, individual psychotherapy to address depression and anxiety, and a young adult group. Dr. Najjar instructs Cahalan to return to the hospital again for another round of IVIG treatment.
Cahalan explains that it is during this third hospital visit that her "true moment of awakening occurred" (197). She begins to keep a diary, starts reading again, and first expresses a true desire to understand what had happened to her (197). In her diary, Cahalan begins to write down accounts of what she remembers during her illness. She explains that this diary emphasizes the true extent of her memory loss because she does not write down any memories from her month in the hospital. With the help of her father, mother, and Stephen, however, she begins to put together a chronology of her lost month.
Four months after Cahalan's initial hospital stay, the lease to her apartment expires and she is forced to move in with her mother. This event emphasizes the harsh reality of her dependent state, and she experiences a major initiative to get her future in order. She begins studying for the GRE and reading David Wallace's thousand-page novel
Infinite Jest. She also becomes preoccupied with her physical appearance and later realizes that the shame she feels "emerged out of the precarious balancing act between fear of loss and acceptance of lost" (205).
Susannah and Stephen
As Cahalan recovers more and more, she begins to more fully reintegrate herself into the world. Her boss at the
New York Post contacts her to tell her he wants her to come back, and this reassures much of her confidence in her own abilities. She also begins to research her disease in order to better understand it for her own sake, as well as the sake of others to whom she tries to explain it.
Cahalan explains that although she will never fully know what caused the onset of her disease, doctors do believe it to have been a combination of external triggers:
"Other mysteries prevail. Experts don't even know why certain people have this type of autoantibody, or why it happened to strike during that exact time in my life. They can't say for certain how the antibody gets through the blood-brain barrier, or if it is synthesized in the brain, nor do they understand why some people recover fully while others die or continue to suffer long after the treatment is finished. But most do survive" (209).
Cahalan eventually returns to work and is asked to write an article on her illness, a challenge that she accepts wholeheartedly.
http://nypost.com/2009/10/04/my-mysterious-lost-month-of-madness/
Cahalan's research on anti-NMDA-receptor encephalitis leads her to discover the vast amount of cases of this disease that go undiscovered because of symptoms similar to other mental illnesses, such as schizophrenia. Treatment for autoimmune disease are also incredibly expensive- Cahalan's medical bills, including the cost of PET scans, CT scans, MRIs, IVIG treatment, and plasma therapies, cost a total of $1 million to treat. After treating Cahalan, Dr. Najjar begins major cutting-edge research that addresses the issue of numerous mental illnesses, such as schizophrenia, bipolar disorder, OCD, and depression, that are actually caused by brain inflammation. Cahalan, was the 217th person treated for her disorder, and, within the next year, that figure had doubled. She explains that doctors like Dr, Bailey are "a perfect example of what is wrong with medicine. [Cahalan] was just a number to him. . .He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line" (227).
Susannah is now, for the most part, completely recovered. She explains that though she does sometimes have experiences that cause her to question whether or not she is becoming sick again, she knows that she is lucky. She describes her biggest problem she must deal with as survivor's guilt- why she has fully recovered while others have not. She now makes it her mission to share her story and raise awareness, with the "ultimate goal that everyone receive the same quality of care that [she] did" (252). She has also started a nonprofit foundation called the Autoimmune Encephalitis Alliance.
"At the time I didn't know. Now I do. I wouldn't take that terrible experience back for anything in the world. Too much light has come out of my darkness" (252).
Dr. Najjar and Susannah
