In Their Own Words: GreenHeart Hero James Baker Shares his TBI Journey

Introduction The value of a goal is immeasurable. In every aspect of life, a goal can push you to success – giving you that little ounce of motivation that you need to do one last rep, read one more page, or wake up one more morning. Big or small, everyone has a goal. Michael Phelps didn’t get twenty-three gold medals without wanting to be the best. Mother Teresa didn’t devote her entire life to the service of the poor without a clear intention. My father doesn’t show up to work every day for nothing – he has a goal in mind. People all have something they are reaching for, whether they really think about it or not. For me, goals mean everything – they keep my life going. Did I complete my goal? Awesome. On to the next one. The next test. The next lap. The next french-fry - you name it. In my life, I see the underlying goal in everything – a single step in getting myself to where I want to go, what I want to do, and who I want to be. In January, my goal was to hold up my 4.7 GPA while maintaining my spot on the varsity swim team. Little did I know, my next goal would be learning how to swallow again. This is the reality of a Traumatic Brain Injury (TBI). This was my reality. Even the most basic of human functions, the ones that are performed hundreds of times a day without the slightest thought, became vague and blurred. I had to put my brain back in order. I had to remember how to walk; slowly putting one foot in front of the other in the marathon of recovery. I had to find myself again in the foggy abyss that was my broken mind; reclaim the things that I once took for granted with a new regard. The journey was dark and treacherous, but I discovered that there is light at the end of the tunnel. And McDonald’s.

My name is James Baker, I am sixteen years old. I was in a ski accident on January 25th, 2019. I was inpatient at Nemours Pediatric Hospital with a Traumatic Brain Injury for two months. I am truly alive now – but I have my goals to thank. This is my story.

Awakening Suddenly, I was awake. Capable of creating memories. The veil protecting me from all of the misery and pain of my injuries had been torn off. I didn’t know what had happened, who I was, or where I was in that moment - but none of it really mattered. I was in a room standing still against the crushing waves of daily life and time itself; in a limbo where my hopes and dreams were suspended in air. The first weeks of my hospital stay that I remember were spent completely naïve to the world, in my own little box. But I wasn’t thinking about any of this when I saw that my dad was in front of me. “What happened? Where am I?” I asked my dad. Unbeknownst to me, this was the fifth time I had asked him - but the first time it registered in my head. “You were in a ski accident, James. You are in the hospital in Wilmington, Delaware.” This was the first conversation I remember having. The first action I remember doing, which I would later find out was two weeks after my accident. After ski patrol found me, I was life-flighted to Lehigh Valley hospital. The first week I had spent asleep and unaware, on a ventilator in the ICU. In this first week, I was given air through a tube and fed through another tube connected to my stomach. I was then moved to Nemours Hospital for Children. The second week I was off tubes, having started to move and complete simple tasks - but with no recollection, like someone had taken over my body and kicked me out. This second week I was

barely getting enough calories to survive, and I had lost over 20 pounds. By the middle of the second week, I was threatened with a feeding tube (NG tube), but my dad would not accept it. After trial and error, he found a formula called EleCare, a formula for rapid calories and protein. Armed with EleCare and a white board, my dad set out to increase my calorie intake exponentially. With this new nutrition, my brain was given that final extra push to get my memories going again. Day after day, and cup after cup of EleCare, memories started to pop into my head, solidifying my past and who I was. My name is James Baker. I am sixteen, not fifteen. I am injured. That was the start to my awakening.

New Life On that day, I woke up to a new, alien life. I could not eat solid food, having to eat purees and thickened liquids. I could not sleep freely, having to sleep in a bed enclosed by mesh. I could not even move around without restrictions; I had a clamshell brace that crushed my torso and could only be removed when in bed because of my back injuries sustained during the crash. Nurses came in the room during the morning and night to check my vital signs and woken up at five A.M. every morning to get my blood drawn, get blood thinner shots in my stomach, and to take countless pills and medicine. I would be ‘showered’ from my hospital bed using wipes, and I do not even remember going to the bathroom. My life had changed, but due to the situation I was in, I accepted the discomfort. There was also therapy. Consisting of several one hour sessions, I had Speech Therapy, Occupational Therapy, and Physical Therapy throughout the day, every day, in the hospital. In Speech Therapy, I was taught how to swallow again, and taught skills to help me remember and

order my thoughts. In Occupational Therapy, I relearned the basic tasks in my daily life: how to brush my teeth, how to shower, and how to take care of myself again. In Physical Therapy, I was taught how to walk again, and performed various exercises to help rehabilitate my body. Each therapy was difficult in its own regard, and the waves of fatigue caused by my healing brain and body would only accentuate the difficulty. Somehow, I would never complain, either because I didn’t know better or because I understood what I had to do. Going through these therapies every day would wear down on me harshly, but they ended up making the difference in my recovery. After two weeks or so of going through this schedule every day, seven days a week, I realized the atrociousness of my situation. I would slowly be walked/wheeled back to my room every day after therapy, spent and shattered. The purees became disgusting. After drinking EleCare I would feel like I had to puke. I just wanted everything to end. I realized that I wanted – no, needed – to get home, back to my old life, with all my strength. I wanted to recover, and I wanted to recover fast – to blow away everyone’s expectations for me. I was told I was going to be in the hospital for the next four months, but I refused to accept it. I had my next goal.

Progress With every day, I kept trudging on. One swallowing exercise after another. One shoulder exercise after the next. One more UNO game - I had my goal, and nothing was going to stop me from achieving it. The days were long, and I would awake just as tired as when I had fallen asleep the night before, but progress was being made. With every day I would feel better and better – even if I didn’t realize it.

Over the next couple weeks, my therapies would consist of very repetitive tasks: swallowing exercises and light brain exercises in Speech, daily-life duties and shoulder work in Occupational Therapy, cardio on the bike and balance work in Physical Therapy, and many, many games. The three-week mark in the hospital passed. But now the ball was rolling, picking up speed. My food was upgraded from purees to chopped mash. The blood thinner shots were stopped. My wheelchair was taken away. Then another forty-five-minute therapy was introduced, called School. School reintroduced me to classwork, stimulating my brain while trying to chip away at the immense amount of school I had missed. Although the classwork was sometimes difficult or mind-numbing, I happily accepted the schoolwork. Whether it was Biology or European History, it gave me a reminder of my life before the accident and what I wanted to return to. I believe that this therapy made me work much harder toward my goal and made me improve much faster. In my other therapies, I was starting to progress. In Occupational Therapy, I was slowly and hesitantly allowed to shower by myself, as long as I had close supervision and stayed in a shower chair. In Physical Therapy, equipped with my gate belt (more or less, a leash), I persuaded my physical therapist to put me on the treadmill. Additionally, getting my painful brace off was visible in the distance. But in Speech therapy, I was not able to eat fully solid food yet. Then came the holy day. My mom smuggled in a contraband McDonald’s hamburger and small fries. After eating purees and chopped mash for so long, this burger and fries was the greatest food I had ever eaten. Even as a swimmer, I never truly understood my love for food until that beautiful day. Second to starting EleCare, this day was one of my major turning points.

From this point on my calorie intake would skyrocket, eliminating the need for EleCare and boosting my progress. Fueled by McDonald’s, among other food, I would regain the 20 pounds I had lost over the course of the next month in the hospital. The whiteboard was no longer needed. Sorry, Dad.

Light at the End I. Had. Energy. I felt ready, ready for therapies, ready to complete my goal, and ready to eat! With real food, my progress skyrocketed. The extra calories gave me more energy throughout the day, which allowed my body and my brain to heal faster. Looking forward to the next delicious solid meal helped me push through my therapies even harder than before. Even breakfast foods, which normally are my least favorite, I would eagerly look forward to immediately after waking up – I had a newfound appreciation for all foods. After I started solid foods, I moved onto solely mental tasks in Speech. Among these tasks were categorization, memorization of lists, and note taking. I remember having to memorize lists until I could roll them off the top of my head with rapid speed and precision. I had to read articles one to four pages long, and then had to summarize them to two or three sentences. This was not enjoyable. The constant repetition wore on me, but it helped me greatly. New strategies such as note taking and executive functioning were taught so that I could succeed in school again with my newfound slowness and fatigue, to find new ways to make up for my previous effortless quick thinking. In School I continued classwork assignments, and even took my first test: French Revolution, a seventy-six percent. Normally, I would not accept a seventy-six, but given the circumstances I

was very happy. This was also the time when I got an overwhelming and legendary 11-win streak in Uno. That was when my talent really started to show. Finally, in Physical Therapy, I had much more energy, and I would push myself every day to get better and better. I increased my warm-up on the treadmill by one minute every day until I had reached my limit. The balance tasks would get harder and more obscure. We also started to use a different gym in the hospital, an outpatient sports gym for athletes recovering from minor injuries. I even got to go in the hospital’s therapy pool for the first time. Things were looking up; there was just one more barrier in the way - my brace. I hated it so much, for it held me back in my movement and it would hurt if I wore it for a long time. Whenever I was standing upright, I would have to wear it. Every day I would wake up, and just sit in my hospital bed until my mom or dad could help me put it on. Getting out of my bed, or even sitting straight, I would have to wear it. My physical therapist was anxious for the brace to come off, so that we could progress in exercises. On a Friday, six weeks post-accident (and my mom’s birthday) I had an MRI to gauge the healing of my back and the removal of my brace. It seemed like an eternity for the results to return. Then the hour finally came. I was in School, probably playing Uno, when my doctor walked in and told me five beautiful words, “James, give me the brace.” The brace was finally off. The pain and the restriction, my own personal moving jail cell, was finally released. I had so much freedom; being able to get in or out of my bed, moving around and twisting my upper body to reach things, even going to the bathroom! Now if I ate too much food, my belly would hurt for a different reason than being crushed. It was amazing. It

just so happened to be my mom’s birthday that day, and she said it was the greatest gift ever. I agreed. Before I got my brace off, my parents and I made an agreement, involving a fire pit. My brace is currently in our basement, waiting to be torched. With my brace off, physical therapy became much more grueling. Balance exercises became more difficult, from one-legged squats to heel-to-toe walking and counting backwards by eights. I wouldn’t have been surprised if my next exercise was standing on one leg with my eyes closed while picking my nose. I also began swimming laps every Tuesday and Thursday, to help regain my endurance. Additionally, I had Speech benchmark tests, and I got to see the results of my first test, just a week or so after my accident. I didn’t even know that I had taken the test then, and my scores reflected it. It sent a chill down my spine to see them – it was like a different person had taken the tests. Lastly, in occupational therapy, I received a survey of how my therapy experience went, indicating that it would be over soon. The doctor finally gave me the words I had wanted to hear; I would move into outpatient therapy, being able to return home for the first time in seven weeks. I was going home.

Outpatient Going home was odd, but very fulfilling – having been gone from the place I lived, ate, and slept for such a long time. Just eating at my dinner table again made me feel at peace. I also got to sleep in my own bed, in my own room, by myself again. The two days I spent at home passed much faster than I expected, and suddenly I was back at the hospital. Outpatient therapy was very similar to inpatient therapy in terms of time span and difficulty, but outpatient therapy was so much more... free. During time between therapies, I

could leave the hospital and get lunch or explore the hospital. During the week, my mom and I stayed at the Ronald McDonald House across from Nemours, housing for patients and families. My mom and I would go there for the week while my dad stayed at home with my brother. Therapy was “freer” too. I had officially “graduated” from occupational therapy, but continued speech, physical therapy, and school. In physical therapy, we continued working on balance and cardio, and swimming on Tuesdays and Thursdays. In Speech, I started to work on a research paper that my biology class was doing. I continued to do other classwork for Euro and Biology in school. My therapies were very focused on school for a reason: I had returned to school. My second week of outpatient therapy, I went to school on Monday and Tuesday and then went to therapies Wednesday through Friday. The first day of being back in school was nerve-wracking, for I had been out for so long. My friend in my first block class, evidently attempting to one-up me, had fractured his leg and was on crutches, so we drove to school together. That way, walking into school together and then into first period was not as daunting. Being in that first period class was extremely weird. No one really mentioned my accident, but I could tell people were looking at me. My teacher just taught like it was a normal class, but she was happy to have me back. Class was the same before my accident – same worksheets, same schedule - except we were covering topics about which I had no clue. I had four blocks throughout the day, but I ended up dropping my second and fourth block classes for resting in the nurses’ office. In hindsight, I wish I had stuck with my four classes each day, even if I got tired. After a month of outpatient, I began going to school three days a week and continued with two outpatient days until the end of the school year. In speech therapy we would stick with notetaking and essays. My executive functioning and organization skills were especially honed upon the last few weeks, and notetaking and essays

were a good way to improve them. Eventually, I worked in therapy to finish my biology paper. A week or two later, I handed the paper in on the due date, and would eventually end up getting a one hundred percent on it. I still had it in me. In physical therapy, time was closing. We went to an actual gym one day, so that I could be cleared to go to the gym on my own again. My PT made sure I was able to use the equipment and was cleared to use our gym at home. I also had many physical therapy benchmark tests to gauge my improvement. Over the course of a few days, I did many tests, including the shuttle run, standing long jump, and many, many balance tests. The days passed quickly and felt like blur, between days of school, driving to Nemours, and outpatient therapy. Then, suddenly, both school and my therapies at Nemours were ending. My care was going to be transferred closer to home. School was over, but I had new goals to accomplish.

Conclusion Currently, I am seven months post-accident. Even as I write the number “seven,” I cannot comprehend the speed in which I have gotten out of this situation; I feel like years have passed since that fateful day in January. I remember one time in the hospital, my mom said that this experience would be just a small blip in my life – but I didn’t believe her. I thought this experience would be a tear on my entire life – a stain on my college resume, a hole in my teenage years, and a time that I would come to look back on and despise. However, my mother’s comment has held up. This event still seems very big in my mind, but as the days go by it gets smaller and smaller, overtaken by the pesky problems of my daily life. It has never struck me

about how much I have accomplished this year until I started writing about it - you never notice how much you improve until you look back and really reflect. I have had my wins over the months after Nemours. I did a month or two of physical therapy and speech therapy close to home, but I was quickly discharged. I was done with therapy mid-July. In late July, I found out that I got a five on my AP Computer Science exam, which I had taken in May. With the help of a tutor, I also took French over the summer to help make up all the school I had missed. I passed the final with a ninety-four percent and got credit for the class in August. One week ago, in late August, I was cleared to swim on my high school team again. Some days I feel crushed, hopeless, and ask, “Why me?” but these wins give me hope again. I have also had my losses over the months after Nemours. I am not fully recovered, and some of my TBI symptoms remain. Most notably is the fatigue. I get extremely tired over the course of the day, and sometimes I get so tired it is hard to be productive. Some of my body systems have also been really shaken up after the accident. Finally, the sheer stress of making up all my schoolwork and dealing with the symptoms of my brain injury has worn on me heavily. I feel much older than sixteen. There are probably other subtle problems with my brain that I won’t notice until I recover fully, but I am thankful. For some, the recovery process is nowhere near the same as mine. TBI recovery is unique - some brain injuries can last much longer, leaving unhealable scars. However, everyone can have a goal – and everyone can improve, even if it is only a little bit. Goals helped me so much, from when I was immobile, in a hospital bed, to now, when I hope to leave my mark on the world. The value of a goal is immeasurable.

A few days ago, I was in the car going home from a benchmark Nemours checkup for my TBI, embarking on the same journey that my parents and I had traveled countless times. I thought over my brain injury, thought over this story that I was writing, and thought of my goals. It hit me then – how grateful I was to still cherish and reflect on the world with a functional brain. I passed sights that seemed familiar to me and brand new at the same time, a surreal reality covered with the dying sunlight of a Friday in August. As I went down the highway, the car rumbled on the uneven concrete, mimicking the joy and gratitude of my realization, and just returning to the place I call “home.” I thought of my home during my inpatient stay, when I was cut off from the outside world and its problems; I thought of my dinner table, with one chair empty, and I thought of my bedroom, soulless and solitary. I was alive. My reminisces were cut short when the car took a sharp turn into my neighborhood, the last traces of sunlight painting the houses. It rumbled to a stop. I looked up at the sky as I got out of the car, a single cloud standing out in the crimson sky. Could it mean something? I walked inside, dismissing the idea, and closed the door. The sun set, a close to the day, a close to the melancholy chapter of my life.