During her week at college orientation at Columbia University in late August 2008, Annalisa Meier, an outgoing, self-reliant teenager, first noticed that she wasn't feeling well. She began having vivid nightmares and experienced an onslaught of headaches. In her first regular class, September 2, 2008, her jaw began twitching uncontrollably. After class, Annalisa made her way back to her dorm room and called her Mother, Pilar. While on the phone with her Mother, Annalisa fell to the floor and lost consciousness. When Annalisa regained consciousness, she called Pilar again, who "talked her" across campus to the Columbia University's Medical Center.
"There was an impressive collaboration between the doctors at Columbia Presbyterian and Dr. Dalmau." Pilar says, "Dr. Dalmau's lab confirmed the diagnosis of Annalisa's paraneoplastic disorder." Dr. Lee and Dr. Dalmau collaborated on how to attack the illness. By then, Annalisa's condition had deteriorated to the point that her very life was in danger. Annalisa received plasmapheresis and IVIG treatments for five days each. Additionally, two teratomas were successfully removed. (A second teratoma was found in a second sonogram, minutes before surgery, that had not shown up on the first sonogram.) The teratomas were removed without having to remove or damage Annalisa's ovaries.
From the time she arrived at Columbia Presbyterian to the time the surgery was performed, Annalisa Meier was in a six-week coma. After the operation, the doctors gradually reduced Annalisa's sedation. In other cases, some patients regained consciousness after the plasmapheresis. Some others regained consciousness after the gynecological surgery. However, Annalisa was slow to respond. She was somewhat responsive only for a day (three weeks after surgery), but then slipped back into a semi-conscious state. The doctors advised the Meiers that she was no longer formally "in" a coma, but that she was still in a semi-conscious, minimally responsive, state.
Recently, Annalisa returned to Columbia University, and began classes on Tuesday, September 7, 2010. She first began classes at Columbia on September 2, 2008, which will always be a sort of persnoal "9-11" date for our family. With continued hard work and dedication by Annalisa, and continued improvement for her short-term memory and executive function skills, we hope to be able to send another update in May 2014 – Annalisa's graduation date.
The last two years of Annalisa's rehabilitation have been challenging for her and the family. Annalisa progressed from (a) being an in-patient at National Rehabilitation Hospital to (b) a full-time, out-patient group therapy program (with persons of all ages and backgrounds, and all types of traumatic brain injuries), to (c) individual outpatient and neuropsychologist sessions and (d) auditing a course at George Washington University (Fall 2009), taking two courses at GW for credit (Spring 2010), and taking two creative writing seminars at Columbia for credit (Summer 2010).
As she improved, she became increasingly aware that mental activities that had been easy for her before the illness were now difficult. One of her biggest accomplishments has been her ability (most of the time) to balance the need to be patient with herslef, which is a realistic acceptance of her situation required (and still requires), against her unceasing efforts to "get to where she wants to go."
Early in this two-year process, Annalisa and we thought in terms of "getting back to where she was," instead of "getting to where she wants to go." With help from her neuropsychologist, therapists and family, Annalisa now realizes that understanding the difference is crucial. Whatever the negative effects, if any, of the illness prove to be, Annalisa is determined not to let them, or anything, stop her from being the person she wants to be, living the life she wants for herself, and accomplishing the things in the world that she wants to do.
For every issue that Annalisa now fights on a daily basis because of the illness (lapses in short-term memory, organizing lengthy and complex material), she benefits from a corresponding positive change to her personality because of the illness (a deeper and genuine self-confidence, a greater self-awareness of her own wants and needs, and a maturity and passion for life well beyond that of others her age). Besides meeting her academic goals over the next four years at Columbia, our hope and prayer for Annalisa is that she continues to cope with and compensate for lingering adverse effects (if any), and continues to develop her new-found strengths.
Reading it reminded us and Annalisa how far, against great odds, she has come. Annalisa speaks regularly these days with other recovering victims of the illness and other traumatic brain injuries, and their families, offering encouragement and sharing practical suggestions for dealing with the frustrations and challenges of rehabilitation. As Annalisa faces the challenges of Columbia's rigorous academic program, we know we can continue to count on the thoughts, good wishes and prayers of all of you – family friends, colleagues, and others who have come to know Annalisa. That support and Annalisa's own courage, determination and abilities make us confident that she will be able to make her dreams come true.