by Laudine Kuhl

I was born a “preemie,” 2 lbs. 2 oz., at St. Vincent’s Hospital in Manhattan. My skin was a reddish-grey color. My head fit into the palm of my mother’s hand and I was the length of my father’s hands put together. If I wanted my life so badly, I would have to fight for it.

Throughout my education, I have always struggled with my “disability.” If asked, I don’t deny that I have one, but at the same time, I don’t like to admit that I have one. I never wanted people’s perceptions to get in my way. My disability isn’t very noticeable anymore. I have gone to school with “normal” children, attended the same classes, and done the same things. None of them knew, none of them were supposed to know. I may have hinted at it when asked, but no one was ever told. It was my great secret.

In order to fully understand, one would have to go back to my life before I was born. You see, I was all too eager to leave the safety of my mother’s womb and see the world. So, instead of patiently waiting for my nine months to be up, I broke free and came into this world on March 6th, 1988, three months (24 weeks) before the “appointed” time.

I was born a “preemie,” 2 lbs. 2 oz., at St. Vincent’s Hospital in Manhattan. My skin was a reddish-grey color. My head fit into the palm of my mother’s hand and I was the length of my father’s hands put together. If I wanted my life so badly, I would have to fight for it. I was in the Neo-natal Intensive Care Unit (NICU) for the first three months after my birth. Initially, I was in an incubator and on a ventilator because I couldn’t breathe on my own. I couldn’t suckle either, so I was given my mother’s milk through a feeding tube. My parents would visit me every day. The nurses wrote entries on the form on the clipboard, at the foot of my incubator, announcing that I had lived through another eight or twelve-hour shift. In early June, around the date I should have been born, I was discharged.

Nineteen years later, I arranged a visit to my birthplace. In St. Vincent’s NICU, Doctor Fischer, the same doctor who took care of me, is still in charge. I walked to the NICU at the end of the hallway on one of the upper floors. I pushed through a pair of sky-blue double doors decorated with cut-out Easter bunnies. I cannot consciously remember my time as a patient in the NICU, but suddenly I was filled with amazement: This is where I spent the first three months of my life. The ward was full of incubators, isolettes, ventilators, respirators, and all kinds of monitors- monitors that bleeped, that ticked, and alarms that sounded; machines monitored the heartbeat, the oxygen in the blood, and the CO2 levels. All of life’s vital signs were closely watched.

I was welcomed “home” by nurse Kathy Egan, one of the very same nurses who had known me at birth! “The equipment is more or less the same today as it was in your day,” Nurse Egan told me. “We don’t use ventilators nowadays as much as we did then, and we use a different brand of IV and a different brand of C-Pap.” (The C-Pap is the little plastic system that feeds oxygen-enriched air to the nostrils.) “But the technology is basically the same.”

I asked Nurse Egan what changes she has noticed over the past twenty years. “Babies are sent home earlier and lighter in weight now than they used to be, in situations where mothers can care for them at home,” she said, adding “babies are fed a special mixture of sugars and fat which makes them grow faster. This wasn’t done so much twenty years ago.”

Nurse Egan said that smaller babies have a better chance of surviving now, thanks to better medication and fetal surgery. She also told me that follow-up programs have grown and are more popular now than twenty years ago. After leaving the hospital, more babies are going to clinics or being visited by therapists who help them with speech, physical, and occupational therapy. I also asked Nurse Egan about parents’ reaction to the birth of a premature infant. She said, “Parents are still in shock…[their] expectations are shattered. Nurses are there to help parents cope with the stress and to teach them the best ways of caring for their child.”

Because I was born so early, many of the muscles in my body were very weak, and I had a bleed in part of my brain that wouldn’t resolve itself by dissolving. There was a membrane that had become clogged by blood. Consequently, cerebral spinal fluid, which is supposed to pass through the membrane, accumulated. In medical terminology, this is called “posthemorrhagic hydrocephalus,” also known in plain English as “water on the brain.” Doctors couldn’t remove the blood clot without the risk of damaging my brain, so they had to develop another way to allow the cerebral spinal fluids to flow away, so a brain surgeon installed something called a VP Shunt, which is like a little tube that serves as a drain. The first shunt that was put in malfunctioned (the fluids weren’t draining properly) and I became very ill. Another was installed when I was about three-and-a-half years old. I still have this shunt today. Without it, I wouldn’t have survived. I was also put on seizure medication through my toddler years to prevent the possibility of seizures.

Statistically speaking, I was one of more than 400,000 premature infants born each year in the United States, nearly 12% of all live births. Infants delivered before 37 weeks of gestation are considered premature. The more premature the infant, the greater the risk of long-term disabilities. I was born at 24 weeks. I have learned that prematurity does not end at birth. Reports vary, but, according to the experts, anywhere from 11% to 45% of the preemie population have some degree of learning disabilities. While I was in the hospital, doctors predicted what my life was going to be like. They told my parents that I might go blind; I might not walk; I might not swim; I might not function normally in a regular class setting. Many parents would have believed them and felt helpless. Fortunately, my parents didn’t.

They never told me what the doctors said. They knew that everyday activities which people take for granted, like walking and climbing stairs, would not be easy for me, but they never gave up on me and they never discouraged me from doing anything. So I tried everything: swimming, horseback riding, the violin, ballet, riding a bike, and so on. I can do all of these things, with the exception of ballet. The art of balancing is something that I still struggle with.

When I was little, even before I went to school, I would go to the hospital for physical and occupational therapy as an outpatient, three or four times a week. I got tired and bored of having to going so often, and my parents figured out ways they could help me without traipsing all the way to hospital. A speech therapist would come to the house; my doctor thought I was having difficulties developing my speech. I learned to keep my balance walking along a beam across our living-room carpet. I practiced climbing up and down stairs in my own home. I learned to swim at the YMCA in Tarrytown. I learned to play the violin at school. Without my parents’ support, maybe the doctors’ negative predictions would have come true.

In 1992, my little sister was born and that same year, my family and I moved to Ossining, New York, and I began to attend the Ossining schools. I had to take a special speech class for a year (during kindergarten). The speech therapists came to the conclusion that I was slow in processing what I was being told, but, once I did process what I heard, I did not have any problem replying. When they finally decided that I didn’t need speech therapy, I thought I was free . . . but not quite.

My teachers realized that I needed more time to complete tasks than other children. When I was in second grade, an Individualized Education Program (I.E.P.) was put in place and I was classified as a Section 504 student, under the 1973 Rehabilitation Act.

An article in the American School Board Journal, entitled “The Issues of IDEA,” explains that Section 504 is part of the 1973 Rehabilitation Act. “This law,” it states, “protects qualified individuals from discrimination based on their disability. The law applies to employers and organizations, including schools, which receive financial assistance from any federal department or agency. All students identified as disabled have rights under this law.”

For me, my Individual Education Program meant that at the end of every year, my academic progress and placement for the next year had to be discussed by a committee made up of some of my teachers, my “special ed.” teacher, the school psychologist, a parent representative and my own parents. For certain periods during the week, I was put in what the school system calls “Resource Room.” It is very close to the top of the “Special Education” pyramid. It is for students who need some help, but not much. That described me and I did not really mind because, for the most part, it was helpful. In Resource Room, students do activities created by a special education teacher and get help with reading, writing, math and other subjects.

My parents fought so that I could get the help that I really needed, not more than was necessary and not any less. In order to get into any “special education” program, you need to have a really good medical reason. In my case, it was difficult to do this because my physical and mental “disabilities” were not obvious. I did not match up with anything that the system had in its books. Authorities in the system’s branch of Special Education suggested putting me down as mentally retarded, but my mother would not have it. In the end, I was classified as having an “orthopedic impairment” based on my diagnosis of Cerebral Palsy (a mild case) at birth.

Cerebral Palsy (CP) refers to a wide range of disabilities affecting a person’s ability to control bodily movement, resulting from some form of brain damage in infancy. My orthopedic impairment refers to my early difficulty with walking, balancing, and fine-motor skills, which are related to the Cerebral Palsy. Still when educators see me, what is on paper does not always make sense to them, based on their superficial observations. When a situation like that occurs, I have no choice but to tell them my life story.

Anyway, so there I was, in second grade, in Resource Room. Wait, before I continue, there is something you have to understand about me: when learning something new, I always need to find my own way, which might not be the same way as everyone else. One person who disliked this about me was my Resource Room teacher, Ms. M., a pale, white woman with short curly brown hair.

She was trying to teach me how to multiply—her way. She wrote everything down on a small index card. I was trying to follow along. “I don’t understand,” I kept repeating. Thinking that I was not looking at the card, Ms. M. said, “If you don’t look at the card, I’m going to call your mother!” But she did not understand that because the muscles in my eyes were weak, they would sometimes wander, especially my left eye (it happens mostly when I am tired). It is commonly known as a “lazy eye,” or strabismus. She did not understand that I could not control it. The session ended when I came up with my own process. All the time Ms. M. complained about how stubborn I was.

I have many visible scars (on my scalp and on my abdomen) that tell the story of my life from Day One. But, I also have invisible scars, scars that will never go away. This experience with Ms. M. will always be imprinted in my memory. I have to continually remind myself that my parents never gave up on me and I can’t give up on myself. I have to remind myself that I can do anything. I may do things differently and my brain may process information differently, but that is just part of what makes me unique.

I was in Resource Room from elementary school, to middle school, up until my second year of high school. I graduated to what is called a Consultant Teacher. This is at the very top of the Special Education pyramid. This program gave me more freedom and independence academically. I was not always supervised, as I was in the Resource Room. I would see my Consultant Teacher periodically to inform her of any problems that I was having academically, and also so that she could keep track of my progress. Whenever I had to take a state test, e.g. the New York State Regents Exam, my Consultant Teacher would arrange where I would take the test and for how long (based on the accommodations that were on my I.E.P.-directions read and rephrased, special location and extended time). I was completely responsible for my schoolwork, but if I ever needed help or support, there was someone that I could go to and who would advocate for me if and when necessary. I was not totally left on my own.

I am classified by society as “learning disabled,” so I have to ask myself, How does society view people with disabilities? What would it be like if, in an ideal world, I could tell anyone that I have a learning disability without being ashamed or worried about the consequences? Society seems to think that the only people who are disabled are the ones with an obvious physical disability or a noticeable intellectual disability such as Down Syndrome, severe mental retardation, or autism. What some don’t realize is that there is a wide spectrum of individuals in society, like myself, who have a mild disability which may not be noticeable at all unless that individual is put in particular situations. In my case, no one would know unless they asked me to walk a balance- beam or asked me to complete a task in the same amount of time as a “normal” person. People with disabilities need to be treated like human beings, not aliens from outer space. People need to continue to be sensitive and creative in accommodating people with disabilities. Signs in Braille and ramps for wheelchairs are just a beginning.

The barriers between the “disabled” and “non-disabled” need to be broken down so that people with disabilities will not be afraid of people’s reactions. I heard a disabled person refer to himself as “differently abled”- I like that. The term “differently abled” makes me question all the generally accepted assumptions that seem to surround the term “disabled”. I could say that I have defied the odds. Even though I am a little afraid to tell people that I have a disability, I have discovered that when I do tell people, they are often amazed. They say that they would never have known. This is encouraging. More importantly, I realize what a relief it is to write about this openly.

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Postscript: After writing this piece, I started to have severe headaches so I went to my neurosurgeon. After several MRIs in 2007 and 2008, finally I was diagnosed with hydromyelia. It is common in children who have been diagnosed with hydrocephalus, as I had. Basically it is a build-up of cerebral spinal fluid in the spinal cord. If left untreated, I could lose the use of my hands, and eventually my whole nervous system.

My father took me to see my neurosurgeon on a beautifully sunny day. When we got back in the car, I broke down in tears. Questions flooded my mind: Why was this happening to me? Why now? I thought that I was finished with operations. I hadn’t had an operation like this since I was three-and-a-half years old.

When my neurosurgeon explained what the operation would entail, it didn’t sound as scary as I imagined—just a tiny incision, the size of a pea. When I told my regular doctor, family, and friends, they all said that they were sorry that I had to go through this. From what my neurosurgeon said, I didn’t understand why everyone was making a big deal. I went from being afraid of what was going on inside of me to being fascinated by it. I had no control over it. I didn’t realize what a major an operation it would be.

After undergoing a number of pre-operation tests, finally on June 10th, 2008, I had surgery. Another shunt was inserted into my skull, this time in the fourth ventricle of my brain. After the operation, I was put in the recovery room under intensive care and given oxygen until I could breathe on my own. I was there until the next day and then moved to a regular room.

During my stay, I felt so vulnerable. In the hospital, a male nurse monitored me most of the time, and my neurosurgeon’s team was all men. I had been in a situation like this before in 2007, but I felt it even more exposed this time. Whenever the team of neurosurgeons visited me, they came in like a pack of wolves, surrounding their prey—me. They were hungry for medical knowledge, and my case was something they could sink their teeth into. They would ask me in a rather cold professional tone, how I was doing, then tell me what was happening, and what was going to happen. I wished they had paid more attention to me as a whole being rather than a case study.

Sometimes I felt like I was in an insane asylum. An old woman, staying in a room a few doors down from me, sobbed day and night. I could hear her crying out that she didn’t want anyone to touch her, that she wanted to leave. My hospital stay made me think about how healthcare has changed. Before healthcare was institutionalized, if you were sick, the doctor came to you. The home was the hospital, because it was hospitable. Now, even though the field of medicine has improved technologically, I feel that the human aspect is missing—people genuinely caring for each other as human beings, not specimens.

I wish there were more doctors and nurses who were empathetic to my healing on a holistic basis; who made sure that I had peace and quiet, and appropriate, nourishing food. After I was operated on, for two days, I was given morphine to numb the pain. Because the morphine made me nauseous, then I was given anti-nausea medication. The first thing they gave me to eat, once I had regained my appetite, was a chicken pot pie…I quickly lost my appetite! After two-and-a-half days of feeling helpless, depending on others for everything, being questioned, being heavily medicated, not eating, and going in and out of sleep, I was released on the afternoon of June 12th, 2008.

Now I have two shunts, and two more visible scars: one going across my back and one running down the back of the lower part of my head, and neck. When I came home, I was in a lot of pain where the neurosurgeons had inserted a tube in my back (where the cerebral spinal fluid would drain away) that was connected to the new shunt. I had to be extra careful so that the stitches in my back and head wouldn’t get infected. My legs were stiff after not moving for two-and-a-half days, so I had to take my time walking. My neck and the lower part of my head also felt really sore and restricted. I still have some difficulty moving my head from side to side and up and down. The new shunt makes me feel as if I have a heavy weight in the back of my neck. I suffer from severe headaches at night. Doctors told me that the headaches were probably due to the fact that my body was trying to heal inside and get used to this new, foreign device.

Psychologically, the hardest thing to deal with is being treated like an object, just another item on the conveyor belt of the health care industry. Of course, I have mixed feelings because I’m also extremely grateful to have been rescued from hydromyelia. The whole experience has been surreal. I feel as though I am reliving what happened to me 17 years ago. I have to relive the pain. It’s a little harder this time because I don’t know how long it’s going to take to fully recover.

At home, my mother took care of me and took me to have my stitches removed. Sometimes, I would become depressed, not just because of the pain on the inside, but because of the pain on the outside. I would think: People will see the scars; I have to keep them covered! I look like the bride of Frankenstein’s monster, cut up and stitched back together again! When will the hair (shaved during the operation) grow back? How long will it take? Will the pain in the back of my head ever go away? I still have these thoughts, but I cannot let them control my life. I cannot worry about what people will think of me. Right now I need to take each day and concentrate on healing all of myself.

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Laudine Kuhl was born in New York City to an English father and a Jamaican mother. She plays the violin and the piano. In her spare time, she loves to read, write poetry, and listen to music. She currently attends Lehman College in the Bronx and is majoring in speech pathology, although she hopes to pursue a career in acting in the future. She lives in Ossining, New York with her parents and sister.