This is a post from Laura from hearttransplantblog.com. I am really pleased to be sharing Laura’s experiences in this blog post.
I grew up as a fairly average kid. I was lucky enough to go to a good school, participate in great activities, and have a bunch of great friends. I remember us all racing home to watch our favourite shows together and having sleepovers and pool parties. I was quite shy but still managed to make friends with some great people who didn’t mind that I was quiet. My biggest problem in life was my clumsiness. I ruined more pants than my mom could keep me in. I’d fall running away from people who made eye contact or even just casually walking home from school. I’d fall on my face like those girls in the movies running from potential murderers except no one was ever chasing me and I was never actually running. I’m not sure why I was so gravitationally challenged. My skating teacher suggested I just needed to “grow into my long legs.” Like a baby giraffe, I guess. I was quite tall and was always placed at the back of the line in class, so it seemed to make sense. I’d put holes in my pants so frequently from falling that eventually, my mom started buying me multipacks of cheap leggings instead of real pants. This prepared me well for future legging trends, thanks mom!
It may sound like I’m leading up to a neurological diagnosis, but no. My diagnosis had nothing to do with my clumsiness. When I was thirteen, my heart failed. I went from healthy, clumsy, thirteen-year-old kid, to dying in a matter of days. I was placed on a machine to keep my sick heart pumping while waiting for a new heart. All I thought about while I waited was going back to my life. I couldn’t wait to go back to my school, my activities, and my great friends. Sadly, that didn’t happen.
One of the criteria for heart transplant eligibility that usually only people who have experienced it are aware of, is having a strong support system. One of the ways doctors assess whether your transplant will be successful is by looking at the people around you. Do you have someone that will help you and care for you? Do you have someone who can financially support you? Do you have someone who will help you remember your pills and take you to appointments? Do you have someone that will be able to handle you being immunocompromised? It’s pretty scary but the people who want to support you will show up. They did for me. I just wasn’t ready for the people who didn’t.
I wasn’t ready. I wasn’t ready for my friends to not visit me in the hospital. I wasn’t ready for them to be afraid of me. I wasn’t ready to be abandoned by the people I was closest to. When I got back to school, my friends wouldn’t talk to me. They’d make plans right in front of me and not give me any of the details. They had been my friends since I was 6 years old and suddenly, they no longer wanted me around. I knew I scared people. My parents would try to explain it to me and try to make me feel better, but I’ll never understand why. All I wanted was to go to the movies with them like we used to. I never could have imagined that not only would I lose my heart, but I would also lose so many people that I cared about too, just for getting sick.
I also wasn’t ready for the people who would show up. So many incredible people showed up for little ol’ me. And I have never forgotten any of them. The new friends I made when I got back to school, I’m still friends with now. I’m now part of a worldwide community of incredible transplant recipients. I lost my friends, but I gained so many more.
As I’m sure many people who have been through a major diagnosis will understand, it is incredibly lonely. Even surrounded by people, we always feel alone. I’m personally incredibly grateful for the people who want to be here with me. I love it when my friends try to protect me. I love it when they ask me if I’ve taken my pills. I love it when they ask me how I’ve been sleeping because I’m a notoriously bad sleeper. I love it when they ask me about my transplant. I love it when they want to hold my hand while I get a medical procedure done. I love it when they invite me to things even if I haven’t accepted their last five invitations because I wasn’t well. One of these days I will say yes, I promise. I love it when they help me up when I’ve fallen because I never actually grew out of my clumsiness. I especially love it when they know me so well that they help remind me of who I am when I get lost. I love the people who want to be my friends so much. I may have lost my heart but that’s the only thing I ever actually lost.
That’s the key, isn’t it? It’s not just people who have been through what I have that need a strong support system to live a long healthy and happy life. It’s everyone. So, let the people who want to go, go. Let them be afraid. Let them make plans without you. Let them give away their place in your life. Let them lose you. Let them lose the privilege of being your friend. Let them leave so there’s more space for the people who will love and support you, exactly as you are.