So…I Had a Heart Transplant

Would you ever know if I didn’t say it out loud?

On October 16, 2001, I had a heart transplant. Ten days later I got to go home after 145 days in the hospital.

I remember being on the couch right after I got home. It was fall. I remember it being gloomy. And there I was, home. Finally. I was sitting on the couch playing video games and watching Harry Potter in clothes that I got to pick out for myself for the first time in so long. I was able to sit in whatever position I wanted without having to accommodate a machine and IVs hanging off of my body. It was as if nothing had even happened.

I remember visiting my school during the Fall open house. I had already been a student there for a year, but this was a good opportunity to meet my new teachers and see my new classroom. They had a desk all set up waiting for me. There was a teacher sitting on the windowsill with a guitar playing a song about a yellow submarine, Mr. Hagerty. I met my homeroom teacher Mrs. Sullivan. She had taught me the year before. It was nice to see a familiar face and one that was even happier to see me. I didn’t know it that day, but both of these teachers would help me discover parts of myself I didn’t know were there and both would help me find myself again.    

I remember going trick-or-treating for Halloween. I had only broken out of the big house 5 days before Halloween. That’s how it felt sometimes, like breaking out of jail. I wasn’t really ready for Halloween that year, none of us were, but I had all of the things I needed to be a mad scientist. Gloves for the dressings we had to change for my surgical wounds, my lab coat from school, and plenty of gauze. I was all set. My sister was a witch, a much more Halloweeny costume. I didn’t expect to be there. It didn’t matter what I was dressed up as, just that I got to go trick or treating.

I remember the rest of my time being plagued with weekly hospital visits and daily dressing changes. I had to go back 2-3 times per week for all kinds of painful tests. I hated it. I just wanted to be left alone. I wanted to be home, the place I fought so hard to get back to. I wanted to be in school. I wanted to see my friends. I wanted to be as far from that hospital as possible. That wasn’t possible. It didn’t seem like it would ever be possible. I couldn’t go back to school yet because they needed to make sure I was going to be ok. I never needed to be convinced. I fully believed that I would be just fine, but I had to let them do their tests so that they could believe it too.

I remember Christmas came and Dad couldn’t spend it with us. We didn’t know if we would get this Christmas at all. It could have easily been a hospital Christmas. Devastating. Dad couldn’t be home because he had contracted the shingles. As a newly immunocompromised heart transplant recipient, it would have been incredibly dangerous for me if Dad was home. He moved out just in time for Christmas. Terrible timing. It didn’t matter, we made sure to make it as Christmassy as possible. Just when it was time to open our presents, Dad showed up at the front door and stood outside to watch. We’ve still never had a Christmas apart.

Then the New Year came and that meant going back to school, finally, and turning 14 years old. An age I very possibly might not have made it to. The Fall went by so quick. The summer had been so long. Just six months before this, my parents were told to start planning my funeral as a way of coping with what they were told was inevitable. I was supposed to be a goner. Then suddenly there I was, sitting at my desk in class, turning 14 years old, with the Yellow Submarine song playing in my head as if none of it ever happened. It was as if it was all a dream.

That’s the reason I celebrate on this day. I celebrate because I made it. I celebrate because I persisted. I celebrate because I survived. I celebrate because I keep going. That’s what makes the gathering and the cake make sense. That’s what justifies the annual social media post and the celebratory feelings. That’s what made it all feel worthwhile.

What I didn’t understand sitting at my desk as a new 14-year-old, as if nothing had ever happened, is that it wasn’t entirely true. Something had happened. An event that would change my life forever. Something that would cause me to struggle for the rest of my life. Something that would at times be irritatingly invisible to others and so incredibly debilitating to me. That’s the reason I want to forget.

I often want to lean into looking normal and pretend that’s reality. It’s kind of a nice little fantasy of mine. Sometimes it’s hard for me to even believe I had a heart transplant. That’s a pretty crazy thing! I’m like a normal person and I had a heart transplant? That makes no sense.

I would often love to forget. I would love to forget that when the fall comes, so do those hospital visits and with them, the little voice in my head that wonders if they will find something terrible this time. The same voice that reminds me that I have not done it yet, I have not figured out my purpose. I have not done anything important. I have only just carried on living and maybe that’s not enough cause for celebration. There should be no cake for simply carrying on. This isn’t my birthday. This is just some day. Some day that created the before and the after in my life. Some day that made me not just Laura anymore, but Laura the transplant recipient. The Laura that, whether I like it or not, has some sort of new responsibility to being a heart transplant recipient.

I’m so happy I get to experience this life. So, I celebrate. I am also so bummed it had to be this way. So, I feel sad at the same time. I think it’s ok to be both. I constantly go between wanting to hide and feeling the responsibility to speak up about it and actually feeling proud and excited to share and advocate. I feel stuck between wanting to just keep to myself and wanting everyone to know.

I thought after so long it would be different. I was convinced that over time I would just become ok with all of this and that it wouldn’t be so confusing. It’s been 23 years. At this point, I’m pretty convinced that this is how it will always be. I will always want to hide one day and burst out into the world the other. I will want to celebrate and mourn at the same time. There’s nothing wrong with that. I no longer believe that I have to choose one and stick with it. I will have days when I feel brave and others when I won’t and that’s ok.

Well, today I feel brave. Today I will eat cake to celebrate and not to eat my feelings. Today I feel like it’s ok to burst out and say the craziest thing that I feel I could possibly say out loud “So… I had a heart transplant”.