It was May 25, 2021. I had just driven 5.5 hours the day prior from Chicago to Cincinnati to visit my friend Lindsey and to take part in her clinical trial on metabolism in Fanconi Anemia at Cincinnati Children’s Hospital. I was excited to be out and about after spending the last 2 years in isolation from most of my friends and family due to the pandemic. I woke up around 6 am feeling just as tired as anyone would waking up that early who doesn’t do so routinely. I stretched my arms, legs, and torso so my body could function just enough to get through the first part of the morning without coffee. As we’re getting ready to walk out the door, I start to feel my neck muscles cramp intermittently. It was a familiar feeling, seeing as how I live with chronic intermitted pain in my muscles and nerves due to the way my body is situated and the medical history it has endured. I gently massaged my neck muscles as I got in the passengers seat of the car and we started driving to the hospital. Slowly but surely, my muscles started heating up and getting more stressed. I began focussing on my breathe, slow and steady, and continued to massage my muscles with my hand thinking, “I’m use to this, it’ll be alright. If it gets worse, I’ll just ask for some Tyonol when I get to the hospital”.
Sure enough, the pain steadily escalated over the course of the 25 minute drive to the hospital. The pain started to radiate down my left arm, then further down to my chest area as my lungs squeezed with each breath. I was used to shortness of breath, given the already scarred and restricted nature of my lungs, but I could tell this was something a little different. I thought I was just having another mini episode of my lungs trying to catch up with the rest of my body. I had dealt with this familiar feeling before by simply taking some Tyonol and sleeping off the pain. As we approached the hospital, I decides I did in fact need some Tyonol. I did my best to continue breathing in and out, embracing the pain I was all too familiar with.
When we pulled up to the front of the hospital, Lindsey dropped me off at the front so I could check in for my clinical trial and she could park the car. But I knew something was wrong. I figured I just needed Tyonol and some rest, so I summoned the courage and the will to pick myself up and get to where I needed to be. As I hobbled myself out of the car, I clenched my right chest area with my right hand and a water bottle in my left. The first few steps I took, I continued to struggle to breath as if walking was the cause of my suffocation. Nevertheless, I was determined to push myself forward to get to where I was to check in. I took small steps slowly, pacing myself while I huffed and puffed with every step. My heart was running a marathon, though not it’s first. Sweat poured down my forehead and slithered down my body as it produced enough heat to start a small fire even though I was wearing shorts and short-sleeves. Halfway to the check-in desk, I stopped walking and leaned against a side railing, acting casually as I maintained smiles and friendliness to the people nodding their heads as they walked by despite feeling like I was on the edge of collapse. I wondered for a moment if I should keep going. Maybe I should ask someone for help getting to check in. No. I can do this. I know I can. I lifted my head, narrowed my eyes, and kept moving with the seemingly 100 pound weight dragging behind my body. I continued taking deep breaths as I pulled myself up with my left arm while my right still clenched my chest, using the railing as needed.
When I finally made it to the desk after what felt like an hour, I could barely talk enough to explain my situation while maintaining my usual sense of humor. Gasping for air after every word, I told the nurse, “hey there, I’m here to check in but I’m gonna need some help first. Could I just get some Tyonol?”. The nurse looked at me and could tell I was in pain. She offered to take me urgent care, which I initially resisted because I didn’t think I needed it. She took me there anyways after sitting me in a wheelchair, which surprisingly helped, and brought me to what seemed like an ordinary office room while paging a nurse to come help me. The wheelchair allowed me catch my breath a little while tears started slipping out of my eyes in response to the pain in my chest and the sadness that came with the phrase, “urgent care”.
Two nurses came in and started asking basic questions about what was happening while they took my blood pressure, temperature, and blood oxygen levels. Chills ran down my spine as a stretcher was promptly brought in. The nurses told me I was “loosing oxygen” and proceeded to put an oxygen mask on my face. Within about 2 minutes, a swarm of about 50 nurses, doctors, and staff gathered in and outside my room. I was scared. Frustrated. Sad. For something I was seemingly used to, I felt like it was made a bigger deal simply because I happened to be in a hospital already. The crowd of people made the situation more real. It was the largest crowd I’d seen seen in nearly a year. People kept talking over each other asking me questions about how I was feeling, what was happening, what my medical history was, who I was with, and giving me information while I fought against an IV for blood draws, x-ray machines, talks of potential surgery, and more. In my mind, an IV meant a longer-term stay which terrified me. I was afraid the radiologists wouldn’t know how to properly read my x-rays because my lungs are scared and restricted at my baseline. I fiercely advocated against potential surgery, explaining to the doctors that in my mind, given my medical history, “if you cut me open again, I might not come back the same”. This followed anxiety from the year prior after being told that orthopedic surgery to treat my severe cervicothoracic scoliosis would not be an option for me given my estimated lung function of 28% leading to an estimated 50% chance or greater. I would need to be on supplemental oxygen from the rest of my life if I were to survive surgery of that nature.
I’m not usually one to fight back against medical procedures and precautions. I just didn’t think anything was necessary beside a Tyonol, which they wouldn’t give me until other tests were completed and I give them a satisfactory pain rating. Somehow the apparent gravity of the situation triggered a new side of me. Memories from when I was about 2 years old in the hospital resurfaced. From the fear of the bright lights of an operating room to the chills of the hospital smells. The truth was, I didn’t know how I felt. I didn’t know how to “rate my pain” as I was asked a million times. I just wanted to freeze time. I just wanted to breathe.
I gave the nurses and staff my phone to access my medical ID listing my medical history and emergency contacts which really helped them and myself. I told them Lindsey, who was on the other side of the building, was the only one with me and suggested they also call my primary care physician if they had questions about my medical history. Lindsey was contacted and arrived within a few minutes. She came to my bedside on the stretcher and held my hand as tears streamed down my face out of pure joy and comfort from her being with me in the moment while my mind and body continued to process the emotions of all that had happened. I couldn’t get much of a word out except a “thank you” while I clenched her hands tightly. A doctor came in and told us the decision had been made to admit me into the PICU for further monitoring under the care of Dr. Davies, an incredible FA doctor who I’ve worked with professionally before and who quickly took over my case when I arrived. As I struggled to come to terms with going to the PICU, a nurse explained to me the advantage in that if something were to go sideways medically, they’d be able to care for me instantly if I was there. Reluctant but tired of fighting, I agreed. Lindsey quickly volunteered to come with me, and before we knew it we were on our way, hand in hand as I intermittently closed my eyes in joy and in pain.
Things were fairly quiet in the PICU, which gave me time to process, think, and recover. My body was immobilized, completely drained of strength and energy to even lift a muscle. I had been fasted for about 36 hours straight. The fruit snacks I had the night before passed right through me so the last time my body thought I had eaten was dinner the night before. I’m used to being in starvation mode, but this was beyond starvation. I was given some IV fluids to help with hydration, which was later followed by one goldfish at a time and slow sips of apple sauce.
A doctor came in with the results from my x-ray and explained, with images, what had happened and why I was still there. I wasn’t exactly “losing oxygen” as I had heard the nurses tell me. Instead my blood oxygen levels, the amount of oxygen that’s carried through the blood, dropped way below comfort level. My lower right lung partially collapsed, spewing air in to the left lung, creating an unwanted bridge between the lower parts of my lungs, causing its own collapse. They called it a spontaneous pneumothorax. Oh how I despise the word “spontaneous”, otherwise known as “without meaning or cause”. I had heard of the pneumothorax before on prior radiology reports over the years as a “partial” presence or “too small to cause any harm”. Maybe that should be the title of my autobiography.
As I lay motionless in my hospital bed, with a high flow of supplemental oxygen, I could feel my heart pounding out of my chest occasionally raising and lowering its rate. My body ached with each breath as my lungs slowly struggled to re-inflate. With absolutely no energy or strength, I felt completely helpless. It’s very difficult for an independent person to do nothing and rely on others for help. While this challenge remained, I found peace in knowing that someone was there to help me through it. No matter how I lay, my body was not comfortable. This time it wasn’t the setting or the amount of pillows I had. I was not comfortable in my body. I would constantly need to readjust myself, but I couldn’t. Lindsey would frequently sit me up and hold me in place, heart still pounding while dangling my arms around her as we slowly swayed back and forth to the ever present music no one else could hear.
With my body positioned at the edge of the bed, my head drooping over the shoulder of another, I stared down at the floor as if I were staring at my reflection in the water only I could see. I no longer felt immense pain, physically or emotionally. Just the shock of both as I began to recover from the trauma I had just experienced. I was on the edge of collapse. Not gone yet, but not really feeling alive. I took a good look at myself for a moment in the imaginary pool of water beneath me, then closed my eyes. All I felt, despite the physical and emotional trauma, was peace. I could feel in that moment that I really was alive. Still breathing, ever shortly. My heart still beating, ever pounding. Mind still active, ever stung with silence. I could no longer smell the all-too familiar hospital smell because in that moment I was no longer hanging over the edge of a hospital bed. I was in the arms of a presence much greater than myself, yet engulfing from within myself. Suddenly I could feel my lungs starting to breath a little easier. My heart rate slowed drastically, still pounding to the beat of a slow ballad. Tears dripped through my eyes like a gentle rainfall in the midst of a drought dried from rain.
Nurses continued to come in an out throughout the days and nights to check my vitals, ask me how I would rate my pain, and see if I or Lindsey needed anything. I felt it important to be patient and friendly with the nurses and other staff, to maintain the human connection in the midst of hardship. After all, they’re human too. Limited in our capacities yet bound for endless possibilities. At one point, a nurse came in and asked me, “if your heart were to stop, would you want us to bring you back?” I froze for a moment as I processed the gravity of what they had just asked me so casually. Their eyes were stung with the serious, yet genuine afterglow of someone who had witnessed such heartache firsthand. I closed my eyes and thought about what the question for a moment. Denial came first as I told myself, “c’mon, that’s not going to happen during this visit”. As I thought about it more, I knew I needed a better response. If anything, for myself. To my surprise, I didn’t think about the aftermath of what could have happened if I were to pass away at any time during this incident. Maybe because I wasn’t afraid. I have watched too many good people pass away already in my 23 years of living that I am stung with the grief of loss. It took the experiences of having been reborn by the selfless act of a stranger, the passing of loved ones, and finding a passion for living to help me summon the will to live despite nearly any circumstance. I wanted doctors to do everything they could to keep me alive. However, I also recognized there was only so much doctors could do in certain situations. For example, if restarting my heart or even surgery would save my life, then they should intervene. If the risks out-way the benefits, I would advise against it. I wanted the doctors to know that if restarting my heart would not bring me back, perhaps if other parts of my body were to start collapsing simultaneously, then there’s only so much medicine and technologies can do other than let me go. Tears streamed down my face again as I summoned the bravery to respond simply, yet with heavy heart, “do what you have to do to keep me alive”. Implying the tagline, “no more, no less”.
My Dad drove down to Cincinnati from Chicago. When he opened the door to my room, a cool rush of emotion flowed through both of our bodies as we wrapped our arms around each other. Tears in both our eyes. Nothing was said. Neither of us could. Neither of us had to. At this point, Lindsey left, and we were transferred out of the ICU and onto the main hospital floor. A sign of progress. I started to slowly increase my food intake and I entered the rehabilitation phase of my stay. The nurses brought me heart shaped pancakes, bacon, and eggs for a deluxe breakfast; my favorite meal of the day. Lindsey came back with Cincinnati’s famous Skyline Chili as the three of us theorized about how my metabolism could have played a role in what had just happened. As our theory went, my body was acting like that of a body-builder. Training the body to use muscle as a source of energy in the absence of subcutaneous fat, of which I had none. My muscles were breaking down the morning my lung collapsed. Alone, my metabolism and lung restrictions could not have caused this. The combination, however, was a possibility. Thus began my journey of a high protein ‘diet’ to maintain energy.
The pulmonologist came in and talked to us about the state of my lungs and ways to move forward. Once a documented spontaneous pneumothorax occurs, there’s about a 50% chance that it will happen again. When? Who knows. Where? My body will decide. Why? Could be a combination of factors. Increased pressure on my lungs is what I need to stay away from. For instance, no scuba or skydiving. No holding my breath when working out or sitting on the toilet trying to force something out. Maintaining my energy by eating the right kinds of foods each day. I was also told I should stay at least 5 feet away from open flames. To which I jokingly responded, “does that mean I have to stay away from my own farts due to the gas?” Humor is blessing in itself, but especially in these times. The good thing about knowing what I’m going to be dealing with is knowing that symptoms are treatable without any major interventions. I can develop habits that reduce my risk for lung collapse, despite not knowing when or where it may occur. That alone gives me some hope.
Day by day, I slowly started to restart my body. One step at a time. It meant relearning how to move myself. How to walk by myself. Each day I moved a new muscle for the first time in a week. As I grew stronger, I grew more confident in myself. More comfortable in my body. Pushing my body just enough to reawaken it but not enough to force it beyond its will. After 5 days in the hospital and hours of waiting, healing, and arguing with the nurses, we were released with 2 large cans of supplemental oxygen for the ride home and a few travel cans for when I need to be mobile. My Dad and I sped out of that hospital in his Camaro faster than the road runner, riding off into a beautiful sunset.
It felt like our victory lap, like the Earth was putting on a show just for us as we drove through the winding roads of Ohio into the strait aways of Indiana. It felt very peaceful, yet still with residual uneasy nerves from breathing mostly on my own with only a nasal cannula, dispensing a subtle flow of supplemental oxygen, to support me. As I stared out into the sunset I began to reflect again in the passenger seat. I was in the front seat seeing signs, distractions, other cars, and sometimes, when I looked, the driver. I could see the road ahead, the road behind us, and the car we were in all with a spectacular sunset view. I could give directions, make the choices, but I was ultimately not driving. It takes someone special to be a passenger in a vehicle. To recognize when to give the directions, when to trust the driver, when to sleep, and when to simply enjoy the ride in our own vehicle of life. Even in autonomous vehicles, despite being in the drivers seat, we still don’t have control. We can tell the car where to go, just as we would tell a driver, but we’re still not driving the vehicle. We may be ready to take over at anytime but can we really? Should we?
I wasn’t in control of my body or my surroundings when my lung collapsed, but maintaining a human connection was integral to helping me manage a time of medical crisis. The simple touch of a hand whether on the heart or in the palm of another physiologically soothes the body. When hands of another were placed on my heart as I hung in their arms on the side of my bed, my heart slowly stopped pounding as our heart rates began to sync in harmony. The touch of a hand possessed a healing effect I didn’t realize humans were capable of. Alongside physical touch, forming a human connection can be as easy as the daily interactions with others we may often take for granted. It’s showing kindness and respect to everyone around us despite the pain we or they may be facing. It’s the small-talk conversations we have with strangers that lets them know we care. It’s the smile we give to other patients and nurses as we walk slowly, but proudly, down the hospital halls. It’s the friends and family you call just to say hello or to help talk things through with. It’s the little things that can make the biggest difference.
Being at Cincinnati Children’s at the right time was truly the best case scenario for an event like this to occur. It got me thinking of the possibility of moving to Cincinnati at a time when endless possibilities were abound. The scary part of doing anything, even walking around on a sunny day, is knowing that my lungs could collapse again without control of when or where. However, the way I see it, medical anomalies can happen at any time to anybody regardless of probabilities. It’s a reminder of the nature of spontaneity, teaching us not to take anything for granted. Perhaps I shouldn’t let fear make major life decisions for me based on what could or could not happen. I’d rather just live my life one day at a time and see how far I make it. That’s a decision I could make despite the ambiguous situation. I made the choice to drive to Cincinnati, with plans of continuing east, without knowing exactly where I was going and when. Interesting how an originally ambiguous situation becomes clear with time, of which we often have little. Just as I made decisions during my lung collapse, I did not know what was to come next, or how to handle it, but I knew what my principles were.
In October 2021, I moved to Cincinnati. It was one of the best decisions I’ve made thus far.
