Lucy Beall Lott tells us about a label that is very different to ones we usually talk about here at Label Press. This label is "terminal." Lucy tells us what it is like to be terminal and how knowing exactly how she will die has changed her life. Not only this, however; she tells us how surviving her terminal childhood illness so far has shaped her life and outlook.
How many of us know exactly how we are going to die?
At the time I was old enough to pronounce my condition without parental aid, a new word was introduced into my vocabulary: “Terminal”. I’d pipe up with this new word in accompaniment with the name for my condition when asked by strangers, when telling teachers, classmates, their parents. But soon, as I grew, these letters turned into something besides words. They turned into something that doctors spoke about in a hushed voice, something I was afraid of.
“Epidermolysis Bullosa is a terminal condition.”
The first time I felt the gravity of the word “terminal” was also the first time I understood that my condition was not just difficult to live with, but nearly impossible. It was my first time on the operating table when I was fourteen, my throat had closed and I couldn’t swallow and it needed to be fixed right away or I’d choke to death. I laid back and took deep gulps of anaesthetic, and, as I fell asleep, I could feel the weight of the word “terminal.”
And that was my life. A condition like this tends to get worse, not better, and until March of last year I was experiencing the fear of the future, the fear of those two words. We’re all terminal at some point, there is no way around it, but to be seventeen and dying is something else altogether; it is unnatural. I aged, while some childhood friends with my condition I knew died very young. My perception of that eight-letter word continued to evolve. I was pulled out of school to accommodate my surgeries and recovery. We moved to the city my specialists were in because “it was time” - I was severe enough. I just was not myself. I went in for a surgery that failed, leaving me sicker than ever and stubbornly refusing certain methods of treatment that would leave me alive, but not a version of alive I wanted to be. Until, after one last surgical intervention, I was okay. I improved. I regained the thirty pounds that I had lost and I finished high school. After a year in London I am now at university, studying, socialising, and hardly thinking about the burrowing scent of anaesthetic that still makes me choke when I imagine it; or the surgical mask against my nose; or the taste of metal after waking up from a long surgery.
I am here. And I am okay.
But, although I am very much alive and have no pressing medical situations to resolve, it does not change my condition. I cannot change the fact that I have this label on my file, or that I have a fairly good idea of how and when I’ll die. It does mean something, however. It means I am now an adult with what is referred to as a childhood illness. What next?
This is a tricky situation. It means many things. There are good days and bad days, and those bad days aren’t necessarily a sign of worse to come. Medically, it is a waiting game, as doctors will be learning with you if your condition is as rare as mine. There are very, very few adults. Sex? Kids? What else? And mentally, it’s odd as well. I am still going when I should be long gone. Sometimes I am referred to by doctors as “the girl who made it to college” and “the girl who lived” by my mother. What should I think about this concept? I am not dying, but it’s not as though I cheated death. It’s still in my future, hopefully not the near future, but it is there.
And, interestingly enough, there is no shortage of representation for those with terminal conditions in the media. But, those with an ongoing terminal condition, one the individual is living with and thriving despite of? Not so much, and this is an issue. It is part of the reason I hesitate to give my new friends the full details of what I have.
Becoming aware of this is vital and separating the patient from the disease is even more so. Who would want to be defined by their mortality? Or to be constantly reminded of it?
That is why the representation we do receive is precarious. For campaigns, we often leave out the adults who suffer from the conditions and while a condition may be featured on television, rarely do we go as in depth about treatment and possible cures as we should.
Why is this?
It is a game of awareness. In order for treatments and potential cures to be developed, there often needs to be this a negative condition so others can see why the treatment or cure is so desperately needed, which in turn dehumanises the patients. It is a frustrating cycle.
It would be easy to continue discussing the negative aspects of living whilst dying, or giving more shocking stories of what happens behind the OR doors, but that would be wrong, and exactly what I am trying to discourage. I am happy, learning, and so very alive and so are countless other patients like me; this needs to become more apparent. Because even though I know how I will die, and when, doesn’t mean I live every day afraid of the future.