Most high school students painstakingly suffer through class after class all morning, awaiting the most prized possession of the school day — hanging out with friends during lunch. No one brought lunch. It was cool to buy lunch.
I brought lunch; this made it much easier for me to slip from period four to the cleanest bathroom furthest away from the cafeteria to eat in a stall and call my mom to cry.
Before Crohn’s disease, I had a place in the social order, mostly because over the summer before 6th grade I grew 34Cs. I played basketball, field hockey, track and field, and softball, and was a cheerleader for the school’s wrestling team, of which my dreamy middle school boyfriend was the star of.
Like any normal teenager, I thought all that stuff was really big and important. And in a way, it was, because though I was a typical-teenage-girl with typical-teenage-girl insecurities, there is a blossoming of confidence to be gained from belonging.
Yet, I’ve learned and grown so much more from not belonging than I ever would have otherwise.
When I got sick in September of 2002, I learned quickly how it felt to not belong. Crohn’s disease rapidly became the pilot of my teenage years.
To be chronically ill at this age is a rude-awakening — it thrusts the social hierarchy I’d been blind to into full view. Suddenly, I wasn’t just an outcast of my former group — but an outcast to my entire age group.
As the years progressed, I isolated myself more and more. Every social interaction began to have so many underlying factors; I observed body language and tones of voice in a new way, and my mind questioned every conversation. It became nearly impossible for me to identify with my same-aged peers, and I felt more comfortable with the older people in my life. My teachers, doctors, and nurses became much more interesting; they knew what I was going through, and I could relate to them. Their arthritic aches were mine too. The loss of identity they experienced as their body aged was familiar to mine. I began to feel safer at the hospital than I did at school.
In a high school cafeteria, there are no cliques for an elderly person wrapped in a teenage body.
I got really good at feeling comfortable alone. And really petrified to be in social situations.
In those social situations, I felt like my Crohn’s was on the outside of my body for the world to see. I’d feel my skin crawl, my nerves tingle, and my mind race, all the while noticing the eye movements, facial expressions, and energy fields of the people around me. If I was in a crowded place, I’d stumble over my words as I’d also hear the surrounding conversations, confusing me even more. And then I’d leave those situations feeling drained and overstimulated.
I missed months of school during ninth grade — a formative time for building friendships. Crohn’s symptoms made it impossible to endure a school day. My absences marked me as “the sick girl,” and I remember being asked if I had cancer or if I would die — because to other teenagers, that was the only possible reason for chronic absenteeism.
From diagnosis onward, I was often the recipient of ‘Home Instruction’ due to not being well enough to partake in a normal school day. Several days per week, a teacher or tutor would come to our house in the afternoon to go over the work I was missing in class. Most teachers were pretty good about sending work home; they knew my absence was reasonable and necessary, although I had one teacher who refused to send work home.
During 9th grade, I was receiving Home Instruction more than I was in school due to the circumstances. Early in the school year, I was out for nearly a month. My science teacher hadn’t sent any work home during that time. I knew he was an asshole, to begin with, but I thought he’d at least understand an illness beyond my control.
When my body calmed down somewhat, I wanted to go back to school — I wanted normalcy. I was so excited to return that morning; I hardly slept the night before in anticipation. I had the normal nerves of returning to routine after being out for so long, but it didn’t compare to the excitement of being able to feel like I was part of something normal. I had science during the first period of the day. I walked into class smiling and met my science teacher’s disapproving glare. He walked over, and without asking how I was feeling, (you know, like a human would normally do under the circumstances) immediately said, “So, you’re far behind.”
“Yes, I know. I’m sorry. I was wondering why my home tutor didn’t bring any work from your class though,” I responded, wanting to melt into the floor, away from his beady eyes.
“No, I didn’t send any work home. Science is something you do, and you’re never here. Sorry, but I don’t know how you’re going to catch up not only this semester but next as well. You’re toast.”
Immediately, like a switch turned off, I realized that I wasn’t good enough for science; not healthy enough to do; not intelligent enough to catch up.
As I’ve gotten older, I now know this teacher was just an asshole. Now, my husband laughs when we talk about this teacher and says, “If only you could time travel to that moment and look him in the eyes and say, ‘Bitch, I AM science.’”
Unfortunately, time travel doesn’t exist, but now this blog does, and maybe that guy is reading these words right now and can now pause to reflect on his behavior and take an opportunity to think about what the right thing to do would have been. Who knows, maybe he’ll have an epiphany about life and humility, or something like that.
I repeated freshman science the following year and was thrilled to not be referred to as burnt carbohydrates for the entirety of my sophomore year.
The teachers that came into my home during that time were so much more than human; I wanted to become a teacher because of the teachers they were, as well as because of the teacher he wasn’t.
We experienced significant loss that year. In January, my cousin committed suicide, and in April, uncle John died. When my cousin’s sister went to my uncle and shared with him her pain over that her brother had chosen to end his life when my uncle was fighting for his, my uncle said to her, “In life, we get a hand of cards. None of us can presume or judge someone as to why they would decide to fold their hand early.”
This became another one of my Crohn’s lessons — realizing that I didn’t get to use my pain as a pedestal to measure the validity of others’ pain and that we don’t get to cast judgment regarding anyone else’s suffering. Recently, when Anthony Bourdain left this world, someone said to me that it was a shame that he ended his life when people like me fight for ours, and I reminded this person that I, nor anyone else, gets a pat on the back for sticking it out; we don’t get to give ourselves some kind of sticker in the wake of someone else’s loss. We don’t get to tell anyone else (or their loved ones) after they passed that they should have done better. We cannot compare pain — physical or emotional — pain is pain.
Back in those days, a household could connect to the Internet OR have access to the landline, but not both at the same time. Somehow and someway, our Internet setup was such that if an incoming call was coming through, a pop-up box would appear on the screen to notify us.
One night at around 2 AM, I woke up to the computer screen in my room lighting up. It had “awoken” because of the incoming call pop-up box; apparently, I had forgotten to disconnect the Internet before I went to bed.
I knew it had to be for my uncle. By this point, he and my aunt Jenn sold the farm and moved to North Carolina. My aunt and uncle were the epitomai of soulmates; she came into our lives when I was four and I was attached to her hip immediately. Not long after they got married, he was diagnosed with brain cancer, and she was a warrior in the face of his battle. It seems somewhat divine to me that my uncle found a soulmate to venture through both life’s joys and terrors with, and years later, I did too. As I’ve gotten older, I’ve learned that soulmates aren’t quite so easy to come by, and I’m so glad my uncle found his.
When I woke up to find the pop-up box on the computer screen, I jumped out of bed and disconnected the Internet, and waited for the phone to ring again. As soon as it did, I went into my parents’ room to find my mom on the phone with my aunt. I remember standing there, seeing my reflection in the mirror from across the room, arms crossed, with this look of both terror and anger on my face. I remember thinking how my expression startled me.
When she ended that phone call, she shared that my uncle had a seizure in the shower that night and that he and my aunt were at the hospital in Winston-Salem. We would pack our bags and drive down that morning.
That week was a blur.
My Uncle John was mostly incoherent for that entire week. He was on morphine and other drugs to lessen the pain of his swelling brain. The surgeons found several tumors; too many to operate on. The end was near but none of us knew how close.
On April 10th, my uncle’s son Zachary, five years my junior, and I were called into the hallway where my mom, Zachary’s mother (my uncle’s ex), and my sister were sitting. I don’t remember which one broke the news to us but I remember the look on Zachary’s face as he looked at me with his little eyebrows raised and this look of bewilderment on his face, trying to figure out exactly how he should react to this, and wanting me to guide him in what that reaction should look like. We were told that my uncle had a pulmonary embolism, which is a blood clot that hits the lungs. Because he was on blood thinners, there was nothing the doctors could do. In the next 24 hours, my uncle’s lungs would fill up with fluid and he would essentially drown from the inside out.
That night was the most coherent he had been all week. We each took turns going into the room to say what we needed to. I went in and sat down next to him on his bed and I told him that I felt like I never truly told him how much I loved him; he looked up at me and said, “Kelloggs, I think you just did.” I hugged him and told him how much he meant to me. He told me he’d always be with me and that anytime I needed him I wouldn’t have to look very far. He told me to follow his light, and that I’d always find my way.
I didn’t want to leave him alone at the hospital that night, but we all had to go back to the hotel and sleep for a little while. We went back early the next morning. Oddly enough, a John Wayne marathon was playing on TV that day — his own personal hero. A week later, at his funeral, I read a tribute to my uncle, and included a quote by John Wayne that I felt my uncle lived by every day — and that I continue to aspire to: “Courage is being scared to death, but saddling up anyway.”
In the hours leading up to his death, he fought like hell. The fluid that filled up his lungs was coming out of his mouth and nose; we gently wiped it away all day. He was on oxygen. His eyes would open and close. He spoke to his dad who had been dead for eleven years at that point.
My mom knew that my Uncle was going to hang onto life as long as Zach was in the room. At approximately 6:05 PM, my mom leaned into my Uncle’s ear and said “I’m taking Zach down to the cafeteria, it’s ok for you to go Johnny. I love you.” She walked out of the room, with Zach, my sister, my grandmother, and Zach’s mother.
His breathing became even more labored than it was; his breath was fewer and farther between. My aunt Jenn sat quietly by his side. At fourteen, I decided that I didn’t want to believe in a God that splintered soulmates this way; it all felt so grossly unfair and unforgivable.
His last breath was a heavy gasp, and that was it. At 6:15 PM on April 11th, 2004, with True Grit on in the background, John Kenneth Douglas took his last breath. I had been holding his hand all day, and at that moment, felt his grip slip away from me.