Making & Choosing Life:
I am choosing at the age of twenty to live my life. In order to do that I must give up the ability to make it.
This upcoming July, I will be receiving a bone marrow transplant in order to treat my chronic illness. For the last four years, I’ve spent my life in and out of hospitals, never knowing when my disease will strike next. I’ve graduated high school and completed half of a college degree in the pockets of life between physical therapy and blood draws. I’ve grown up on plastic waiting room couches; doing my homework in exam rooms. I am no longer upset by it — it’s my life. After a particularly bad flare of my disease in December, I was given the option to continue the course of medical treatment that I have always had or try something different — a bone marrow transplant. For me, the choice was obvious.
My disability has made my experience of life different and intimately formed my identity as a person. I have always struggled to find a balance for myself when it comes to accepting my own femininity in the context of chronic illness. While other teenage girls were learning how to do make up, I was dealing with thinning hair and learning how to hide the bruises. I never felt pretty. Once I began to accept my own body within it’s own terms, I began to realize that obtaining an able bodied person’s perception of a woman was a damaging comparison. I needed to be a woman on my own terms — accept that I might never get rid of the bruises, but that I could wear them with pride.
Then there’s my biology. Of course, I acknowledge that not all women have vaginas. For the purpose of this piece, the word female refers to a person’s sex and woman to a person’s gender. As a young female, woman I’ve thought a lot about having children someday — something that I’ve felt conflicted about my whole life. I do not consider myself a motherly woman, although I am young. If I do have children, that would have to take place far into the future — I have things to do and places to be. However, getting a bone marrow transplant removes the possibility that I will ever have children that are biologically mine. Yes — I could freeze my eggs — yet, I don’t see that as a viable option. Freezing eggs is a massive undertaking that require an extensive amount of time and money. Considering my circumstances, having my own biological children is the least of my worries. It’s also incredibly devastating to know that I can’t.
I’ve had fluctuating reactions to the news; the mourning comes in waves. Realizations like that need time to seep and process. There are times where I can’t even speak about it without a voice crack and other days when I can talk about it with no problems like it’s a fun fact I learned on Twitter. At first, my initial reaction was one of heartache. I mourned my potential children. I wanted 30 year old me to have the option — to have a choice someday when I was ready. It felt like one more thing that was being taken away from me in my fight to have some control over my anatomy. Now, on top of everything else, my disease was taking my children. Literally.
Now my opinion has changed. From the beginning of this decision, I’ve deeply considered the effect that it may have on my life. It could kill me. I could die from a whole number of things or even get another disease. Even then, I have to be in isolation for months and undergo chemotherapy. There will be days when I will wonder what have done. There already have been those days. Yet, I have never regretted the choice. I don’t see myself regretting it. For the first time in my life, I have been given just that — a choice.
There is a certain power in welcoming in something terrifying and knowing full well that you want it to happen. There is also an incredible sense of empowerment that comes from choosing yourself, all while knowing the full meaning of that choice. That’s not something I’ve had — the ability to decide where I end up — real body anatomy. While I’m giving up the ability to have my own biological children someday, I’m gaining the rest of my life — whatever that is. It will be a life that I chose; not something that happened to me. Having a baby won’t be a part of that now, but that doesn’t make me any less of a woman. I am simply choosing myself.