What I learned about life, my friends and myself when I was hospitalized with a rare lung disease
My entire life has revolved around art. I have developed my artistic skills and improved my originality through years of hard work and perseverance. By the time I was a senior in high school, I received my acceptance letter to the School of the Art Institute of Chicago (SAIC). It’s one of the top art schools in the nation, and I aspired to go there and study animation and film, hoping one day I could become a director and head animator of a production company. In addition, I accepted the Distinguished Scholarship and through academics, portfolio, and writing, and I was ranked in the top 2% of SAIC, placing me in their First Years Scholar Program. I also received a grant to study abroad in Siena, Italy the following January. I was absolutely ecstatic; my future seemed bright.
My family and I left for Chicago at the end of summer. When we arrived, I noticed that my breathing felt a bit unusual; I was only able to inhale a third of my lungs, and as I exhaled, the small amount of air within my lungs would escape my mouth and I let out ghastly coughs. I told my family what was happening, but every time I said anything about it I would get the same kind of response: “You’re just nervous. It’s anxiety. Calm down.” I never knew what an anxiety attack felt like, nor have I ever been an anxious person. I agreed with my family, but things only became worse the next week.
Soon, my parents left Chicago and my classes began. I tried to ignore it, but my breathing made me very uneasy. I became so short of breath that my vision split in two and I ran out of breath while talking, making it difficult to have conversations with my new friends and teachers. I kept trying to convince myself that it was only nerves, telling myself: “Calm down! You’re fine, you’re fine, you’re fine…” I would attempt to inhale and exhale to calm myself down, but it left me coughing and choking.
Friday evening of that first week finally came. I climbed down from my loft and stumbled onto the ground and began coughing, and coughing, and coughing. I looked at my hand and saw spots of blood that had come out of my mouth. I sat in my chair and sipped at a leftover smoothie. My sister lived in the same dorm, so I texted her and asked her if she could bring me some food. A few minutes later she opened the door, caring crackers and grapes. “God Daphne, you can’t just live off of smoothies…” She stopped in mid sentence and looked at me saying, “Hey Daphne, do you want to go to the hospital?” I nodded, and she called 911.
Once the paramedics had arrived, two men escorted my sister and me down to the ambulance. They did not take my vitals, and the first thing they asked us was, “You guys do know its $1,000 to ride the ambulance, right?” We knew they weren’t taking us seriously, so we ditched the ambulance idea and took a taxi instead. My sister tried to calm me down by saying, “Don’t worry Daphne, people go to the hospital for anxiety attacks all the time.” At that point, I was fed up with the “anxiety crap.” I knew this had nothing to do with anxiety.
When we arrived at Northwestern Hospital, a nurse took my vitals immediately. When the numbers appeared on the screen, the nurse had a look of shock on her face, with her brows furled and an open mouth. “Hey,” she said, “Do you know your oxygen is at 50%? How are you able to walk?” I was so out it that I glanced at her and shrugged. After many MRI’s and X-Rays that night, the doctors could not figure out why my lungs were in such poor condition. They eventually came to the conclusion that a lung transplant may be necessary.
Around 6:00 a.m., a doctor came into the room and pulled up a chair next to my bed. “Hey I wanted to let you know what we are thinking about doing…” he continued to talk about procedures and medical things, most of which I don’t remember. After he was finished, I asked him, “Am I going to be alright?” He responded, “Umm…I think so.” That’s the best he could give me. I still wish I could have heard something more hopeful.
That same morning, my mother arrived in Chicago. She walked in along with my sister and a whole team of doctors and nurses. A lady said to me, “Hello Daphne, we need to talk. You’re in a bit of a situation here; your lungs aren’t doing very well. I will explain the procedures we have in mind.” The lady began to describe what a trachea collar and ECMO was to me. “Do we have your consent to do this?” I agreed, and that’s when I was put to sleep.
My dreams during the first week of my hospitalization were vivid and dark. I always dreamed of a black figure. We never spoke or made gestures, but we did stare at each other for long periods of time until I woke up the next morning. One night, during my dream, the black figure and I were glancing at each other as we always had, but something happened that I didn’t expect — like a statue that had been pushed over, the stiff figure fell to the ground. I woke up immediately, and it was then I had my first memory of sunlight.
I didn’t discover this until my discharge, but I had ARDS, Acute Respiratory Distress Syndrome, and AIP, Acute Interstitial Pneumonitis. I was taken off sedation the end of the first week. From my knowledge, patients on ECMO are generally sedated, but my doctor wanted me awake for reasons of his own. The next few weeks were utterly brutal. I couldn’t talk, eat, drink, or move. My main focus was my breathing. The trachea collar, being strapped around my neck, applied the pressure and pain you feel when someone hits you in the throat, except this hit never went away.
Crying was something that became natural to me. I cried everyday; I would wake up and find that I was crying in my sleep. I would start crying again, and soon after my tears and swollen eyes put me to sleep. It was an unbreakable cycle. Missing out on college tore my heart, but it that wasn’t the worst of it; I had no future, not anymore. No one had to tell me I was dying. I could see it in everyone’s eyes, especially in the eyes of the nurses. I felt pitiful, old, and lifeless. I could let go at any moment; my heart weighed heavy on my chest, my vision started to glaze over, and tears began spilling over on the corners of my swollen eyes, again.
In the midst of all my distress and sorrow, small amounts of hope and serendipity began to make their way into my life. The doctors started to see some improvement, so the lung transplant was held off for the time being. Just knowing that, my mentality began to shift little by little. I started to think about my future rather than the present. That same week my thoracic surgeon, Dr. Bharat, wanted me to attempt standing on ECMO. The following day, my nurses helped me out of the bed. As soon as I sat up, I felt a rush of blood pumping to my head and throughout my entire body. The nurses had little confidence that my legs were strong enough, however, I stood up without any trouble. I stood in place for a few minutes next to my bedside, wiggling my toes and glaring down at my feet. I picked my head up and turned towards my physical therapist. She asked me, “ Can you squat…?” And I did. And then I walked in place. And then I walked forwards and backwards. And then the next day, the staff wheeled in a treadmill. My doctor had me walk on that treadmill for 30 minutes. From my understanding, I am the first person to walk on ECMO in Illinois, and I can truthfully say I’m honored by that. I was taken off the ECMO, and soon after they took out my trachea collar.
While my body was improving rapidly, I was mentally losing it. I had my first anxiety attacks in the hospital, and every time I had one, the psychiatry team came in and asked me all sorts of questions. They asked me if I had any suicidal thoughts, what kept me from sleeping at night, and why I was sad. I was being prepared for discharge the last week of my hospitalization.
One day, I was leaning over my bed and I saw drips of blood dripping down from my face. One by one, spots of blood appeared on the white sheets, as I stood there stiff as a rock. A nurse rushed into my room as I was screaming bloody murder. It turns out I had a bloody nose from the oxygen cannula. I was losing it; the sight of my own blood scared me so badly I went into an anxiety attack. After taking an anxiety pill, I laid in my bed, staring at the white, empty ceiling. I was tired of being disturbed every two hours by the doctors, the nurses, and the psychiatry team. At that moment, I heard the door to my room open. I was so mad I thought I was going to lose it again; a moment of peace was all I wanted.
I was relieved to see it was only Dr. Bharat. I don’t know any other doctor who came in to check on me as frequently as he did. “Hello, Daphne! How are you?” I swallowed my tears and replied, “I’m doing alright. I had an anxiety attack last night and this morning.” Tears escaped my eyes and rolled down my face. He had a confused expression on his face. “But you’re an inspiration…Daphne, with the lung disease you had, 80% of people who have it don’t leave the hospital alive, and the other 20% are crippled for the rest of their life always in rehabilitation. You are neither of those. You defeated a disease in a month, and within a few months your life will go back to how it was before you got here. Don’t let anxiety beat you because it can.” And then he left. There was a point where I believed all my hopes and dreams were gone, where it seemed as if those many years of hard work were pointless, but he gave me a part of humanity that I had lost.
My family was always with me. My father and sister visited me often, but my mother was at my side from the moment I woke up until the time I would fall asleep. I know that she got tired of rubbing my feet for hours on end, but it was a good distraction from the pain in my chest and the throbbing in my neck. Her strength to hold back her tears while she was there comforted me. It helped me believe that everything was all right. Many of my high school friends sent me texts wishing me good health and telling me that I was in their prayers, but within a week of my hospitalization, my friends, including the best of my friends, became bored and distant, driving me into more grief.
Isaac is different story though. This is undoubtedly the most unlikely and unusual friendship of my life. In high school, Isaac was the kind of guy you’d describe as a “hot shot.” He had lots of close friends and girls loved him. He plays soccer at the Air Force Academy, which is far from my world of artists and misfits over at SAIC. We were family friends, but it wasn’t until I was in the hospital that we began to talk. I don’t think he could ever understand how much I appreciated his texts everyday. Isaac’s amount of condolence, consideration, and courteousness brought me back to sensibility. It was because of him that I was able to recall the memories of my life before the hospital. These long, yet simple conversations gave me the right amount of motivation and consciousness to believe that I was truly still alive and that I wasn’t forgotten. Some friendships happen in curious ways, and this one was significant to my survival.
Exceeding the doctors’ expectations, I was cured within a month, avoiding a lung transplant and other sacrifices. My story was also told on Chicago’s WGN Living Healthy. After only a few months of rest, I began my studies at SAIC. I was able to keep my scholarship, my placement in the First Years Scholars Program, and my trip to Italy. This experience affected me in many different ways, and I even lost a couple friends. I have a new life now, so perhaps I should start over in various ways. So many good things have come out of this experience, including many new friendships and amazing opportunities.
Difficulties happen in life, and you can’t avoid many of them, but you can choose how you approach these difficulties. I did not want to die; that, along with the help of my exceptional doctors, is what gave me a second chance at life. Every person has to come to terms with the cards they have been dealt, and we all have been challenged with personal misfortunes and obstacles. However, these things can be blessings in disguise. Success comes from using those negative bearings in a positive and enlightening way. Don’t let your misfortunes and obstacles go to waste; they have a purpose.
(Image via Flickr Creative Commons.)
Daphne Edgren was born in Greeley, Colorado. She is now a student at the School of the Art Institute of Chicago, where she is learning animation and film, aspiring to work in movie productions and directing.