“There’s no one else?” I said. I leaned back in my chair, looking at the powerpoint presentation on my genetic counselor’s Ipad. She seemed excited— I was too. I was also conflicted. How am I supposed to take this?
She nodded eagerly, “Seriously. It’s just you.”
I raised my eyebrows. It didn’t surprise me at all. I also didn’t know what to do with the information.
You see, I’m an X-Men. No, literally. I’m the only known person to have a certain genetic mutation on some weird part of my chromosomes. To the medical community, it might be a big deal. To me, it’s just another way that the universe has decided to single me out, against all odds, once again.
“I guess I have a new fun fact to tell at parties,” I mumbled. “As if the Edgar Allan Poe thing wasn’t enough.”
To know that there are literally seven billion people on the earth and that absolutely none of them are like you is kind of cool. It’s also incredibly lonely and compounds loneliness is a way that I don’t even know how to describe. There is the normal kind of human loneliness. The realization that everyone around you seems to have someone, perhaps. The realization that you’re alone in a big city. The feeling of sitting alone in a bar. But this is different. To know that, out of 7 billion people in the world, you are very much the only you— can be crushing. In fact, it’s not something I like to think about, because it just emphasizes what I already know.
Once, I saw this news article about the last great white rhino, sitting in the Africa, surrounded by guards day. The very last one in existence. The only one left. I think about that rhino a lot. Sometimes I think that rhino might be the only thing on this earth that actually gets it.
I am incredibly aware that there are very few people that can relate to my experiences and the way that I live my life. I am abnormal in every way possible, down to my genetics. Even people who have chronic illnesses don’t have the issues that I’ve had— most of them never will. I don’t fit into a category, even by medical standards. I don’t fit anywhere. In some cases, I am literally the category. There have been times the medical community just hasn’t known what to do with me— something that almost killed me when I was eighteen.
I will admit, sometimes it is kind of cool to think about. I once joked to an ex-boyfriend that I was unique— “most women just think that they are,” I said, “but I actually am one of a kind.” At the time he laughed it off. He also broke up with me two weeks later because the medical part of my life was too much. The truth is that being unique isn’t always a benefit. Sometimes it can make the world feel incredibly impossible. It can be both empowering and terrifying. Sometimes it gives me strength; other times it crushes me completely.
People don’t realize the amount of guidance that they get in life from seeing themselves represented in other people. I feel as though I am constantly looking for myself places, but can never find a face in the crowd that I recognize. While there are certain aspects of other people’s experiences I can relate to, there are lots that I do not. I relate to the experience of having leukemia because my disease is so similar— but I’ve also been sick for much longer than typical person with cancer. I also very much do not have cancer and have a much wider range of symptoms. As for the chronic illness community, I understand the complexities and challenges of living life in this way, but now I am considering a transplant option that is a cure. There’s a possibility that my illness is no longer chronic. There’s also the extreme rarity of not only my diagnosis, but also the extreme of my illness itself. Even for people who have my disease, I am on my own. I feel like a Frankenstein’s monster of experiences and medications. I’m everyone. I’m also no one. This is all just medically, of course. If you add on the rest of my life, then it becomes even more complicated. Feeling like this all the time can make you a recluse. I have always said that I like to be alone, because if I’m going to spend time with someone, then it should be someone who actually understands.
Nevertheless, I am incredibly grateful for my experiences. I recognize that I see the world in a way that no one else ever will and that gives me certain advantages in life that others don’t have, even though they are not always obvious. I want to get my masters in journalism with an accompanying J.D because I want to cover healthcare policy in a way that others cannot. I can relate to people in a special way— because I really do know what it’s like to struggle against all possibility. I can see the flaws in the system because I know the system well. I also hold my life incredibly dear. I think a lot about capturing moments; really appreciating them. I feel as though my life has given me a gift; the ability to let life really seep. I have been given the motivation to act against things when other people won’t. There is a very certain kind of fearlessness that comes with knowing death well. I value that. I also use it to my advantage. I have taken a lot of risks in my life because I am aware of what it really means. I have never regretted taking them. I also know myself incredibly well. I cherish my body even when it is awful. I have dealt with the absolute impossible— once in a life time situations more than once in a life time with grace and dignity. I have not only survived impossibility, but flourished. I might be the last great white rhino, but I am also the rose that grew from concrete.