Finding the meaning of life amidst an incurable disease

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Only six months ago, I was certain I wasn’t going to see the new year. As I stared at the ceiling of my hospital room for the fourth day in a row, I was only hoping I would leave the room alive. Today, I’ve never been more excited to enter 2024.

On July 6, I sat in the ER with two infectious disease doctors and another one on FaceTime, actively driving to the hospital I was at. Upon his arrival I received some of the worst news that a person can. I had tetanus — a blood disease that has no cure.

I was admitted into a care unit, with my life in the hands of hope and medical miracles. Every doctor and nurse was coming to visit me, to see the woman who is one of 30 people a year to get tetanus. No one had a definitive answer of what to do with tetanus — or what to do with me.

I was laying in a hospital bed, looking over at my mom trying to find the right words to say. To any person, you would look at my mom in that moment and see a strong woman — her face showed more bravery than I have had in my entire life, but I knew deep inside, she was worried and praying for me to make it through. I couldn’t say anything, because I needed her to continue having faith — for both of us.

On night two of being in the hospital, I had woken up in the middle of the night, pulling at my chest, unable to breathe. Tetanus attacks your muscles, causing painful contractions which can lead to the inability to breathe. My back was completely arched, I wasn’t breathing and as I looked at my mom, standing behind at least six doctors, I worried it would be the last time I would see her.

All of the words that I wanted to tell her earlier flooded my mind, and because I couldn’t breathe, I couldn’t talk. All I could do was look at her and feel my tears fall down my cheeks and along the edge of my oxygen mask. My eyes closed to the sight of a nurse pushing medicine into my IV line and everything went dark.

I relive the moment I got tetanus over and over. It replays in my head like a broken record. We were on the boat for Father’s Day, just as we were on any good summer day. Water is my happy place — it’s where all my worries fade out of existence. On a boat, I am at peace.

We had docked the boat at shore to swim in the lake. A while later when we were about to get back out on the water, my dad realized that the motor was stuck in the sand. I put my foot near the motor, trying to feel around, but just as I did, a huge wave lifted the boat, sucked my leg under and the motor came straight down on my foot.

I could see the panic on my father’s face. He was talking to me, but it didn’t sound like anything but mumbles. My eyes crossed and I went into survival mode. I had one option — wait. My dad backed up to the bow, attempting to take weight off my foot, but regardless, I had roughly two tons weighing down on my right foot.

Growing up, my dad was my rock. His name was written on every “who is your hero” assignment in grade school. Seeing that look on his face changed me. I never thought I would see such panic in the eyes of a man who is so put together. But, for every tear I shed that day, he had an “it’s going to be OK, kiddo,” to help me wipe away those tears.

The thought of someone having tetanus is mortifying, and it was to me, too, but now it fuels my every living moment. I am grateful for every single person and opportunity that has crossed my path and I am beyond happy to still be here today. I have been adventurous since I was born and if tetanus has taught me anything, it’s to go. Be who you want to be and do the things you love — you never know when you won’t be able to anymore.