Sick: A Story of Survival

*though this is a work of non-fiction, names have been changed.

Sick:
A Story of Survival.

March 14th, 1977. Beaumont Hospital. Royal Oak, Michigan. A Tuesday, around 10:30 am, I was born, my diabetic mother’s only child and a month early. My first experiences with the outside world included under developed lungs, IV’s in my head, and nurses poking my baby heels on an hourly basis. I spent the first few days of my life isolated in a plastic box while the Doctors encouraged my tiny lungs to develop. When I was finally discharged, despite my significant case of colic, I was deemed healthy. My parents gathered their newborn and retuned to our home. There I met my three eager half siblings. After a slight transition, we all settled into our assigned spots within our non-traditional family. Just over a year after my arrival, our modern day family began to crumble.

A woman’s intuition never fails and from the moment my mother confirmed his affair, that was the end of my parent’s relationship. It wasn’t filled with big dramatic scenes they both just simply knew it was over. My mother knew, for her, infidelity was not a forgivable action and my father knew his actions alone were responsible for the demise of our family unit. Shortly there after, the divorce papers were filed and proceedings had begun. My parents managed to remain good friends and they respected each other for the title that they each held in my life. When the divorce was final, my mother and I began our new lives as statistics; I the child of a broken home, and she a single parent.

After the divorce my mother and I took up residence in the only place I consider home, my grandparents house; in this house there was never a lack of laughter, or love. Whether it was dressing grandma up like a Christmas tree, or grandpa rocking my blanket and I off to sleep, the love was abundant. My grandma consistently smelled of Estee Lauder and Cover Girl make-up; always willing to give a lipsticky kiss and my grandpa in his white tee shirts and faded blue jeans, spending his days fixing this or that, spreading eerie warnings about toe-dadlers and snipe hunting. My days were spent in childhood leisure donned in grandma’s flashy necklaces and red lipped kisses. Life was as it should be, safe, fun, and hospital free. It wasn’t until a few months later that my lungs began to give out.

I was a year old. The clear plastic tent surrounded the large metal hospital crib that contained my tiny body. The yellow hoses were connected to the plastic spewing oxygen into my baby cell. My little arms housed needles that pumped clear fluids into my veins as the tears ran non stop down my flushed cheeks. It seemed like weeks went on with nothing but tests. Uncomfortable x-rays, blood work, new doctors and different nurses. There was always a new face to get used to and always a sense of urgency. After all the test’s concluded, the needles and tubes were removed. The hospital staff sent me home with a common diagnosis; Asthma, possibly allergies. After many months under the care of a standard pediatrician, and uncontrollable asthmatic symptoms, it was suggested to my mother that we seek treatment with an Allergist.

Dr. Peter Nichols MD. The engraved silver plaque cemented to the side of the small red bricked building, read the name of my new Doctor. I’m not sure I remember the first time I saw Dr. Nichols, however the years of treatment that would follow this initial meeting would become the cornerstone of my medical care. The doctor was a tall, thin, grey haired man with a big smile and gentle demeanor. His exam room was filled with brightly colored cartoon pictures of lungs and children taking breathing treatments. He had big black and white photographs of street signs from around Detroit and a whole section of canisters on the counter filled with everything from gauze to cotton balls to tongue depressors. His kindness set both my mother and I at ease, and gave us a certain amount of hope that soon my breathing troubles would be solved. After the conclusion of his routine exams we were sent on our way with 2 stickers, a lolly and a handful of prescriptions.

Even after being properly diagnosed, medicated appropriately and put on a steady regiment of allergy shots, the hospital visits continued to become more frequent. Neither I nor my mother were sleeping through the night due to my late night attacks and the asthma ward at St. Johns hospital became a home away from home. The nurses all knew my name and I knew theirs. I knew the Play dough lady came on Tuesday, and I knew Fridays were popcorn day. I knew that Dorita was my favorite nurse and I knew my monthly visits to the treatment room meant injections, intravenous therapies, and tears. The admission rituals became second nature to my mom and I. Everything always started with a call to Dr. Nichols. The drive to St. John would follow shortly there after. Once we arrive we were rushed away into the treatment room, where my mother and I would ritualistically count while the nurses scouted optimum placement for their medical instruments. After a couple years of this there were three things that became fact. Number one, a hospital visit usually meant 5-7 days, number two after the first infusion of medications I would always vomit, and number three I always got a new toy. Though our lives were hectic with Dr.’s, hospital stays and preventative allergy care we began to settle in and accept that this was our fate. It was mom and I against Asthma and the world and we were up for the challenge. Then he arrived.

I’m not really sure when or where my mother met Al, the only thing I do know is we both could have done without. I was about 5 or 6 when we moved in with him and even at that age I knew this was going to end badly. My asthma had been on a slow decline for quite a while and during that time I had been placed on a maintenance dose of Prednisone (a strong corticosteroid, used to decrease the inflammation in the lungs). Though prednisone is a fabulous drug for what it is used for, it would set the tone for considerable medical issues the rest of my life including weight, joint problems, and immune deficiencies. The side effects of these medications became part of living. Endocrine changes, severe mood swings, ravenous hunger, and many other undesirables. While my kid body was blowing up with steroid fatness my behavior became uncontrollable. Our move in with Al coincided with my first trip to a Psychologist. Nobody ever attributed my bad behavior to Al and no one would know until years later that he was molesting both me and more than likely, his own daughter (ironically, also named Jessica). I have never been able to speak with Jessica number 1, as she was affectionately referred, in my adult life to confirm my personal suspicions; however, there are times when ones gut feeling doesn’t lie.

While things began spiraling out of control at home, the hospital visits kept increasing. The attacks were coming on quicker and more severe and my behavioral issues continued to be a problem. There was a source of contention in the house between my mother and Al. By this time all I knew was that I hated him. I wanted desperately to go live with my father. I saw him weekly, on Thursdays and despite the fact I resented the hell out of “the other woman” he was living with, I was willing to put aside my dislike for a chance to take up residence with my Dad. I made my feelings clear and after my attempts to relocate, I realized my father was not going to be the one to save me. As fate would have it, Al turned out to be a misogynist of gigantic proportions thus making my mothers decision to leave pretty cut and dry. Finally after all the hoping, wishing, and praying to absent forces, it was just us again.

My mother, in her infinite strength, gathered both of us up, damaged and bewildered and began to repair the broken parts of our lives. We moved into a tiny duplex in Royal Oak. It had just enough room for my mother and me. She worked hard for both of us, never once putting herself first. As I grew and began to put our bad luck behind me, the asthma continued to worsen. I was now not able to play outside without having an attack. I wasn’t able to spend the night anywhere unless I had my breathing machine with me, and the nighttime attacks were becoming an all day thing. My mother was constantly leaving work to take me to either Dr. Nichols or to the hospital depending. The treatments were getting more severe; there were painful epinephrine injections now along with high dose infusions of Theophyline and high dose breathing treatments that left me shaky and confused. Over all, these rituals were becoming tiring and old for the both of us. Our strength was beginning to fail and our hope was beginning to dwindle.

It was during a routine visit to Dr. Nichols that it was first mentioned. He told us about a hospital in Colorado called The National Jewish Center for Immunology and Respiratory Medicine. “It’s the best in the country for treating uncontrollable asthmatics” he told us, “if you can make it happen I would recommend it.” So it began the investigations, the preparations and the final plan. Over the next year my mother would prepare both of us for a move more than halfway across the country.
Finally, in the summer of 1985, my mother loaded the both of us into her royal blue Dodge Aries, hooked the rented U-haul trailer to the back, kissed both my grandparents goodbye and off we went. Off into this massive unknown, 1,270 miles from home, knowing no one, all in the name of a healthier life.

We drove in the hot summer sun through many cities and states. We stayed in hotels in the middle of nowhere with chirping crickets in our room. We followed flat land for miles, tumble weeds and dust our only visual stimulus until we crossed the Colorado state line. We could not believe what we saw. They where the most massive things either one of us had ever seen. Far off in the skyline, they were peaked shapes so big we thought they where clouds. This was the first time I saw the Rocky Mountains. At that moment those mountains became symbolic of our strength together, of what we could accomplish and most of all hope. They welcomed us to this new land, this unknown place with kind and beautiful arms. Within a month after arriving in Denver, I had my first appointment at National Jewish.

My initial arrival at National Jewish involved every emotion one can go through. After I was initially evaluated in their triage area and I was taken to the critical care unit. This was unlike any hospital I had ever seen. This place was huge. There were machines, monitors, and breathing equipment that I was completely unfamiliar with. There seemed to be millions of people in white coats with welcoming smiles all concentrating on me. I was stabilized with their particular set of asthmatic algorithms and my first night there was filled with terror. I was alone with medical people I had never seen. Dorita and Dr. Nichols were a thousand miles away as I lay connected to tubes and wires that I had never experienced before. All the people in their clean hospital garb reassured me. Everyone was gentle and caring. They made every attempt at making me feel welcome and comfortable. Over the next few days I would be evaluated on every possible level, and eventually I would be placed in a dual diagnosis unit referred to as 2-may.

Specifically, 2-may was a behavioral and Respiratory medicine unit. My psychiatric evaluations revealed I would be best treated on this specialty unit due to my extensive history with behavioral problems. I was a rough kid to deal with. Behaviorally, I was uncontrollable. I had major issues with authority; I was hypersensitive, impulsive, and generally contrary. My mother had dealt with my many issues for 8 years and was not surprised when I was admitted to this unit. We were led down the large white hallway and entered 2-may through big grey doors. All around me were kids my age. They came from all over the United States; New York, Nevada, and even Hawaii. Most of our stories contained the same common denominators; long term, uncontrollable, respiratory illness and behavioral problems. After arriving on 2-may I was diagnosed and medicated for everything from reoccurring major depressive disorder; to Tourettes Syndrome (I still wonder where they came up with that one). I was able to wear out 3 psychiatrists during my year and a half stay on 2-May. I was prescribed countless medications that acted on various parts of my nervous system. Some made me crazier others made me comatose, eventually a happy medium would be achieved but not without a cost.

Life on 2-May was relatively normal considering its residents were sickly, hormonal, medicated kids. We had a school on campus that we attended 5 days a week for the usual 8:00 – 2:45. Our lives were pretty standard as long as we didn’t stop to think about it for too long. Outside school hours, we had movie nights and visiting days and outside of that we had therapy; Vast, intense amounts of therapy. There was art therapy, occupational therapy, physical therapy, group therapy, any kind of therapy one could imagine, we were receiving it. It was a constant stream of psychoanalysis along with our own personal respiratory programs. The people around us became our extended family. They watched over us and tried their best to be good disciplinarians, and to point us in the right direction. They read us bedtime stories and made us laugh when we were homesick, and when we cried there were hugs to comfort the tears. We all ate together, played together, and grew to love one another as siblings do. 2-may became our home.

During this time my mother was rebuilding her life. She found a decent paying job and moved into an apartment in Aurora, about 20 minutes away from Denver. I would go on “passes” with her to our home where I had my own room, stuffed with toys. Initially they were only for a few hours, but soon I would be spending entire weekends at with my mom. We would eat Domino’s Pizza and watch movies as we began to pick up the pieces together.

I was released from 2-may after a year and a half of continual treatment both physically and mentally. I continued outpatient therapy once a week, and remained enrolled in the on campus school. My asthma was controlled and I was finally able to enjoy my life as a normal child would. Now 10 years old, I was just beginning to live my life on the outside; in the real world. The adjustments were hard and at certain times impossible. We dealt with multiple obstacles; my behavioral problems, harsh side effects from various medications, and what seemed to be the never ending battle of whose will was stronger. The next few years would try us in every possible way but we remained strong together. By the time I was fourteen years old we’d left our homestead in Denver to relocate back in Michigan and closer to our family.

My time on 2-may was not the last time I was institutionalized nor would it be the end of my illnesses. Before I turned twenty one I would survive cancer, drugs, and another decline in my respiratory health. My life wasn’t easy, but it could have been worse. My mother and I were able to ride out the rocky roads and enjoy the smooth ones; the commonality was we did it together. My mother saved my life when I was eight years old by traveling half way across the country for medical treatment, and she still saves me on a daily basis, simply by being my mother and always offering up her unconditional love. Growing up sick and different gave me strength, but my mother showed me how to be strong.