I wrote this a few months before I got really sick and needed a transplant. I figured I would share it now that I've had one. It was interesting for me to go back and read this after I had a transplant to see how I was feeling and now know the answer to most of the questions I asked in this piece. I hope you enjoy.
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“Transplant. What does it mean? What is it? How do I feel? When will it happen? What will I go through? How long will I live after? Will it hurt? Will it be worth it? What if someone deserves a transplant more than I do?”
Thoughts often flick through my head faster than I can comprehend them. One of those picture books that you shuffle through to tell a story but you don’t look at the individual pages? It’s often like that, thoughts run together to make me feel confused. Questions asked that I cannot answer make me feel anxiety. I have to go back to those individual questions and write them down so I can take them one by one and understand them. I have to take the time to slow down my mind so that I can understand it. Take that book and open up to each page. No one else can understand me as well as I do because they do not have all of my experiences, they do not have all of my memories. I am the one who can be the most honest and understanding with myself. However, there is a fine line between understanding and making excuses for yourself. We have to learn to change the behavior that can be modified and be understanding when something is beyond our control.
I never wanted a transplant, not when I was a kid. I never saw that as an ending, hoping for one to make me whole, I didn’t see it as an option at all. I can’t recall exactly why I didn’t want one, maybe because someone else deserved one more, maybe because I would always see the clock in the corner of my vision ticking down to the time of rejection, understanding if I survived the first year I probably wouldn’t survive the next ten? Statistically that’s what all the papers said. There were probably a million reasons I didn’t want one, a million excuses I could make to myself. One day that all changed, the day my son was born. How cliche, right? Maybe it happened before that day and definitely happened even more after that day. How can a child grow up without a parent? Sadly I know it happens often, but if all I have to do is take care of myself to make sure my son and I have more time together - how can I not do that?
Somedays I don’t know how I could be selfish enough to take lungs from someone else who is waiting. Maybe they could die without them. Somedays I don’t know how much lungs will help me because of how awful I feel overall. Somedays I don’t know how much longer someone else’s lungs will work in my body. I feel guilty, I feel sad, and I used to feel angry when I was younger. That emotion doesn’t come over me that often anymore. There is no reason I have this disease while someone else doesn’t. Maybe I could feel I’m a better person who is more deserving of a normal life than someone else, but more often I understand that if I had been born without a chronic, terminal-illness then I could be a completely different person. I probably wouldn’t be as humble or appreciative of life as I am now. I don’t think life did anything to me, I think I am just one of the ones who is not normal, if there even happens be such a thing as normal. There are millions of genetic abnormalities I could have, I just have one. Life is not punishing me, life is not doing anything to me because of who I am.. it just happened. Like some flowers are blue while others are pink. It was the way I was born, I have to live with it. I do not need to be jealous of anyone else because it gets me no where. I do not have to feel bad for myself because it gets me nowhere.
I have to live with the life I was given and figure out how to make it through, just as others have to navigate their own lives. No ones life is that much easier than others, we all have our troubles, we all have our problems. Mine have always just been sooner than many others. Smokers often have to deal with what I’m going through at a much later age. Experience gives you knowledge, knowledge gives you wisdom. I go to a pulmonary rehab classes with mostly men in there 60-70’s. They can’t breathe, often after a lifetime of smoking. They may need a transplant as they get older, but the statistics show I’m actually more likely to live longer after a transplant. I’m younger and I have spent my life in the hospital, taking meds, and doing things I need to do to get meds - deal with insurance issues, doctors, pharmacies, etc. It’s a lot of work, a lot of work someone who hasn’t had health issues often isn’t prepared for. Quitting smoking now would be most beneficial to your life at sixty.
I wouldn’t wish the lung transplant process on anyone, as many people as I can talk out of smoking and talk into exercises at a younger age, the better. I wouldn’t wish anyone to be sick either, but I do wish everyone the wisdom and understanding that comes with it. I have not hated my disease for many years now, I have been appreciative for all the life experiences it has given me and all of the lessons it has taught me at a younger age. People often tell me I have an “old soul”. I have an old soul because I have dealt with much in my short lifetime. I have learned from much in my short lifetime. I have taken the time to understand my flaws, change my ways, become a better person, understand the type of person I want to be, and work toward being that person. I’m lucky enough to have family around me that help push me be the person I want to be. I try to surround myself with people who push me to be a better person.
I said to my friend today that I don’t have the luxury to take the time to figure out the type of person I want to be, I have had to figure that out since the moment I understood I was dying. It was a defining moment in my life that I couldn’t exactly tell you about because I don’t remember it. There was no light switch moment, there was no huge event.. I just remember knowing death was a certainty. The irony is everyone is working toward their own death and no one knows when it will come. After understanding I will die, I’ve been fighting for understanding of myself since I can remember. I remember writing about how angry I was, how unfair life was, how my doctors didn’t understand me, my mother didn’t understand me, how no one understood me. I didn’t realize my unease in this world was pushing me toward being a person who understood herself better than most people. I wrote down my feelings as I thought them and I reread them later to try and figure out what was going on. What was pushing me to feel certain ways. That is an absolute blessing, one that I probably could only have gotten from living the life I’ve lived. Everyone has experiences that defines them and everyone has moments that will change their lives forever. Those moments can strengthen us like a piece of hot metal being forged into a sword, or they can collapse us by thinking back on the pain of that fire, the pain of that hammer on us, and not noticing the sleek new design we now hold. Our defining moment was the heat of that fire, the hammer was making us deal with our emotions, was bending us to the shape we were to become, making us strong and solid, the wet stone is our experiences keeping us sharp. If we use our experiences to forge us into this new person, we have to be willing to be thankful for those experiences that sharpened us into this new person. Thinking about the pain of the experiences does no good, instead we must use the knowledge we have gained to make us better people.
Taking the worst experiences of our lives and using them to help build us to be a better person is what life is all about. It’s the school of hard knocks, it’s street smarts, it’s becoming a wiser person, someone with life experience. I know I have been angry at the world, at my disease, at everyone and everything at times, but that’s not me anymore. I grit my teeth and I tell myself to keep going. I say tomorrow is a new day. I say one more hour, one more minute, even one more second. If I have to take life one second at a time, I will do it. I will take one second at a time because I know I can handle that amount of time. Once the pain is over - be it physical, mental, or emotional pain - we realize we can do more than we thought we could. We have become stronger, we have grown wiser.