How I Live Knowing I Should Have Died

Coping with illness and the feelings of anxiety, frustration, and fear birthed from it.
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The EMT shook his head. I caught the doubtful look in his eye, but I didn’t know what it meant. Only months later, when my mother was recalling those moments in conversation, would I learn that the ambulance was refusing to transfer me to another ICU because they were afraid I wouldn’t make it there.

“Why do bad things happen to good people?”

I was laying flat on the emergency room table with a temperature of 105.8 and the top number on my blood pressure cuff blinking 52. It was 2015, the day after Black Friday ― and I wasn’t surprised to be back in the hospital. In my sophomore year of high school, I’d been diagnosed with an alphabet soup of issues. When I moved, I cried. When I laughed, my body burned. I woke up in the morning dreaming about going to sleep. Pain was my life.

This moment was different, though. To be honest, I don’t think I knew how close I was to death, but I remember thinking to myself that once upon a time I had wondered what it felt like to be on one’s deathbed. Now I knew.

Today, we know for a fact that somewhere along the line in that emergency room, the doctor made a decision that saved my life. Along with antibiotics to treat the infection that wasn’t ravaging my system, she gave me steroids. Given that they thought I had a septic bacterial infection, they really shouldn’t have. Even to this day, I am haunted by that.

“When I looked in the mirror, I was dead."”

Over the course of the next four months, my world slid downhill. I lost 30 pounds. Every crevasse of my body was touched by a doctor’s hand and I had more track marks than a heroin addict. There are entire months I don’t remember, but the moments are vivid. I would sit in the shower and scream because I couldn’t move. I realized, for the first time, I couldn’t turn a doorknob. I hated myself for once thinking that if I didn’t wake up the next morning it wouldn’t be so bad. When I looked in the mirror, I was dead.

Then, in April, everything changed. I had my fourth major relapse, and during the hospital stay I was diagnosed with not one but three autoimmune disorders. It turns out that the macrophages in my body like to eat my internal organs in their free time and previous diagnoses had been slightly off. A month later, the day before high school graduation, I was given a new drug as a last hope. The next day, I woke up, put my feet on the ground, and got my diploma. The second I touched my it, I felt like I won. But I also felt conflicted. All of a sudden, I was faced with living life.

When you don’t think you’re going to make it to senior prom, how do you accept that you’re going to live on instead?

Chronic illness is the equivalent of taking a casual, Sunday stroll through the shadow of death forever. There is no magical light switch that allows me to take a break when I’m tired or emotionally drained, and even if there was, some days my hands are so bad that I’m not sure I could switch it off if I wanted. On top of that, the body I had for 18 years ceased to exist the second I got put on 60 milligrams of Prednisone. I felt ugly and embarrassed by my body. Suddenly, I wasn’t me. I didn’t know who this was.

The Monday after graduation, at 6:30 a.m., I put on my running shoes for the first time in three years and hopped on my bike. I watched my feet turn the wheels like it was magic and reminded myself that working out would never hurt like having an IV burst in my arm. I made a choice in that moment: That would be the summer I would somehow find my “okay.”

Part of me decided that the first thing I needed to do was mourn for a little while. In my mind, my childhood ended in that ICU room, but I had never gotten the chance to say goodbye. I needed an action to make it official, so I dyed my hair pink and took all of my old pictures of myself out of my room. I looked down at my hands, turned the knob to my bedroom door all by myself, and made a promise. Losing the war wasn’t an option.

Original Illustration by Katelyn Stewart

I sat down with myself and thought about what I wanted. There was so much I wanted to do. What did I even like? And what was I going to call this? Claiming my disease and my disability was a big milestone. The first time I told the story out loud, I sobbed. I looked at my giant, swollen face in the mirror and told myself that it was okay to be scared.

Somehow, it got better after that.

When I finally went to college in August, I wanted to try everything, and for the first time I could. I dyed my hair the shade I’d always dreamed and got in shape. I found makeup. For the first time, when I looked in the mirror, the person looking back was me. I found her. I fought for her.

Looking back, I understand now why bad things happen to good people. The truth is, I am who I am today because of the worst moment of my life. Good people are made from bad things. Every single needle stick is another reminder that my body is literally trying to eat me, and yet I know that because of it I’m going to get to watch my brother and sister graduate high school. I’m going to be at my best friends wedding and be home for Christmas this year instead of in the hospital.

I may have almost died, but I found my life.

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