2012 M.D. Candidate, Florida State University College of Medicine and
José Rodríguez, M.D.
Florida State University College of Medicine
New freshly pressed clothes, new woodened desks, new unopened books, new kind teacher, new school, and a few new friends were all I was greeted with on my first day of third grade. A few days into this excitingly new environment, I contracted the chicken pox virus and was enjoying a few days at home, watching television and trying not to scratch. One night, while trying to walk to the bathroom, I stumbled and fell. The world was spinning and I did not know why. I called out to my parents for help. My father came quickly and carried me into my parents’ room. I had a fever of 101°F. My mother gave me Tylenol and drove me to the city hospital. Soon after I was admitted, I rapidly slipped into a coma.
I had herpes encephalitis – with brain swelling and coma. I was unable to talk, move, make facial expressions, or even use the restroom on my own. My exciting new school year rapidly disintegrated into confusion.
I could hear everything that was going on around me and tried countless times to speak to my mother, but nothing was traveling from my brain to my mouth. My mother stayed with me in the hospital from admission to discharge. My mother’s bed was to my left and the door to exit the room was to my right. Every day I would see her and desperately try to communicate with her—but my body would not respond. She later told me that she thought that I was unaware of her presence. I am very grateful that my mother stayed in spite of thinking that it made no difference to me. Her hope for me kept me going.
In the confusion, I remember receiving a stuffed Minnie Mouse doll from a family friend. I was thrilled, but I could not express my gratitude. I could not reach out to take the doll when she offered it to me. I felt like I was being rude. Every day my mother took me around the hospital in a wheelchair – the highlight to my day. I recall seeing room after room and nurses walking around with their charts. I even remember what I call the “strong hospital smell of the sick.” Once, a nurse tried to feed me chicken broth so I would not require a feeding tube. I recall the broth’s smell and brown color, but I could not open my mouth to eat. Hence, I was placed back on the feeding tube. It was terribly painful when the IV was placed back into my arm. I was screaming at the top of my lungs, but no one heard.
I did not quite know what was wrong with me at the time, but I felt safe, protected, and most importantly, loved. My physicians told my mother that there was nothing more that medicine could do for me. If I recovered, they said, then I would not be the same child I once was. They were right.
I appreciated the professionalism and care that I received from my physicians and their staff. Though I did not fully comprehend what was happening at the time, I knew that they were doing everything medically possible. However, it was my mom who made the difference. She was always there.
At the time of my discharge, I still was unable to talk, walk, or eat unassisted. I lost the majority of the memories of my life prior to my illness. The things that I now call memories are stories that were later told to me.
My grandmother, “Granny,” played my favorite movie, Disney’s The Little Mermaid, every day all day while I was at home recovering. After many days, I began starting to sing a few of the words and dance a bit. Granny was ecstatic! She said it was one of the happiest days of her life. It was also the beginning of my completely new life.
Prior to my illness, I was enrolled in an English-French bilingual school. When it was time to start school again, I did not speak either language very well and was constantly confused – mixing up English words, French pronunciations and vice-versa. I needed help to relearn the language, as well as the regular third grade curriculum. I was placed in special classes where I received much needed extra help. I learned letters as if I were back in kindergarten – but I knew that I was able to read before my illness. That was extraordinarily frustrating.
My grandfather, “Papa,” tutored me when he came home from work every day. He made learning fun. He taught me a card game where the object was to count the cards laid out on the table before your opponent. I think he was teaching me numbers and how to count. He was so proud when I finally beat him. At the time, I never thought that I could ever beat him, but looking back, he probably let me. Papa’s efforts helped me advance to the regular third grade class by January of that school year.
While I was catching up, I did not have time to participate in dance lessons, piano lessons, or Girl Scouts. I was taking longer than the other students to come up with the same answers. I was blessed with a gifted third grade teacher, who understood my situation and never allowed me to feel like an outcast. Her belief in me helped me to relearn much of what the encephalitis had taken from me. Over time, and with the help of generous teachers and mentors, I enrolled in honors courses and participated in the activities I once enjoyed.
I am now about to begin my first year of medical school. Because of this, my experience has taken on new meaning. I have learned new ways in listening and being attentive to others. I suppose I could use my illness as a crutch, but instead it has driven me toward a career in medicine. When I was awakened from my coma, I awakened to a new vision in life. I relearned many things, and experienced firsthand the loss of function. I felt what it was like to be in a room where no one thought that you were there – talking as if you were not present. Now I know that the patient is always listening, and we must have our words and actions reflect that fact. Because of this experience, I want to form a patient-centered practice, where what the patient (or the patient’s family) wants is used to make decisions.
As I reflect on my mother’s dedication and devotion to me while I was sick, I am grateful that she was allowed to stay. I also see now the difference that she made in my recovery. She gave me hope even though the doctors no longer had hope. Because of her profound influence on my illness and healing, I will make sure that I am sensitive to family visitors. Their work is, at least, if not more important than what I will do as a physician.
I have learned to believe in hope, devotion, and service even in hopeless situations. My mother’s example has taught me that. Having been in the hospital and hearing everything as if I were not present, I have learned that even when the doctors have given up hope, hope remains. It is this hope that I wish to instill in all of those who come through my office door. It was my mother’s hope for me that got me through the illness, and I hope that I can be as strong as she was in spreading hope to others.
This article first appeared in the Summer 2008 JSNMA, Volume 14, Number 3
Filed Under: Lifestyles
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