Since becoming involved in the Odyssey community, I have read a handful of well-written, touching articles by students who choose notto be defined by a disability, a diagnosis, or a difference that they struggle to overcome. In reading their pieces, I understand completely. I commend them for opening up about that which makes them self-conscious and conquering their enemy through the therapeutic practice of writing.
Recognition is often the first step in coping with something like a lisp, or dyslexia, or a mental illness like depression. Some diagnoses or disabilities are more serious than others, but that is not to say that the less-serious ones deserve less strength to overcome or accept. Perspective is important, but over-rationalizing a diagnosis and discounting any emotion (i.e. anger, sadness, embarrassment, resentment) is far more dangerous than having no perspective with regards to "bigger problems" in the world. A lisp is not cancer, nor is dyslexia depression, but a personal journey is a personal journey.
Before I go further, I have to preface by saying this is not a pity story. I know everyone claims they aren't looking for pity when they reveal a certain sad circumstance via social media. Secretly we all judge them for using a social platform for attention and positive reinforcement via comments, but defined or not defined by x, I think those who write about x deserve to write without being accused of pity-seeking. Alas, I digress.
My journey began before I was born.
The doctors explained to my mother—pregnant with her third child—that her baby had a kidney complication. In August of 1998, my mother gave birth to me. The doctors were pleasantly surprised at my apparent health—despite the polycystic kidney bulging from my right side. Fourteen months later, doctors removed my kidney and gave me steroids to boost the strength of my left kidney.
As it turns out, the kidney develops in the same layer of the embryo as the reproductive system. My doctors suspected that further complications might arise, but there was nothing to do but just wait. I visited the hospital on an annual basis so radiologists could monitor my kidney as I grew older. At some point, a point which my innocent and young mind can’t distinguish, the hospital visits grew more tense. I remember one particularly challenging appointment that took several hours as the radiologists struggled to find that for which they were looking; painfully unaware that the missing piece was my entire reproductive system, I laid in the dark room with tears rolling back from the outer corners of my eyes. I understood that my kidneys were of concern, so I knew why I had to unbutton my pants a little while the nurse pressed on my abdomen. I had drunk so much water (as the nurses instructed me to do to make the images easier to identify in the ultrasound) that I desperately had to use the restroom, but I was too scared to cut the tension in the room. One of the technicians left to retrieve assistance, but she left my pants unbuttoned. The cold gel remained on my stomach. From that moment on I resented the feeling of vulnerability and innocence.
A few MRI’s, ultrasounds, and appointments with regional specialists later, I was diagnosed—at almost 18 years old. I have a genetic syndrome known as MRKH (the four letters just stand for the names of the four scientists who discovered it); essentially I was born without a reproductive system. This diagnosis, of course, was not a shock to me nor my parents. There had been discussion years ago (before I even knew what a uterus even was) that I might not be able to conceive a child. Somehow in my innocent mind, I could at least grasp that such a prognosis was something about which to cry. For several years leading up to my official diagnosis, I struggled to accept that as my reality. At points I convinced myself that I was depressed, that I was unworthy, that I was un-loveable by any man because I would never give my husband a son or daughter.
Being so young, how can I be so sure I knew I wanted kids when that discussion first arose? Why was I so upset if I didn’t even understand what it meant to never conceive or even what a uterus looked like? I knew I was supposed to be made uncomfortable by the discussion, because no one enjoys discussing their private parts with their mother and a wrinkly old doctor. When resident doctors joined my specialist in his visits with me, I’m not sure why I always nodded my head to grant them permission to inspect me, study me like a subject of science, and never see my face again. Maybe I knew that I was sacrificing my comfort in the name of discovery, so that maybe one less girl will struggle through years of uncertainty and shame. Slowly I felt defined by my complications, because they were all I knew to dwell upon.
During the period of confusion and pain leading to my diagnosis, I found solace in adoption; while my mother talked hopefully in the potential of science to change my future, I remained firm in my belief that I was just destined to adopt. I made it my identity, and so I was then lucky to travel to Honduras on a mission trip in spirit of my newfound global interest and compassion for others. I don’t want to claim that I was noble in my profound strength to turn my tragedy into a blessing, because I selfishly made the idea of adoption about me; I planned to adopt to fix my heart, not to better the life of a child.
My mission trip to Honduras ultimately changed my life and the way in which I let my syndrome define me. I met a girl named Jennifer, and her story is this: she had very poor vision and her family didn't think she was very smart or capable until another group of missionaries brought glasses to her village. As it turns out, Jennifer is very smart and very capable, and when I met her almost three years ago, she dreamed of being a doctor. My heart broke when I couldn't make her wish come true and bring her back to the States for a better education. Meeting Jennifer transformed my perspective on adoption and my (then unofficial) diagnosis; I suddenly understood that I lost the ability to conceive but gained an even greater gift: the chance to one day change the life of a very-deserving young child.
It’s hard to explain years of emotions and various trains of thought in an article like this, but I urge you to recognize that if I was not defined by my diagnosis, I’m not sure if I would know who I am in this world. Without the resentment I felt for doctors, I would not have the great appreciation I do now for those in the medical field—I certainly couldn’t imagine the pressure they feel in entering a room with bad news (or a lack of answers). Without the heartbreak I felt for my unborn children, I would not have the incredible love I do for children that presently gives me purpose. Without enduring that shame and embarrassment, I would not have the self-love and confidence that fills me now.
I’m okay being defined by MRKH, because I know that it’s possibly the best thing to have happened to me (however I promise you it doesn’t always feel this way). I have found comfort in the familiar faces of nurses who took the time to know me and my story. I have found a comical irony in my motherly-tendencies with friends and teammates despite my prognosis that I won’t have kids of my own. I also found a sort-of broken beauty in my own growth from a young girl to a young adult throughout my years of doctor visits; when I realized for the first time I was driving myself alone to the hospital, I cried at the absence of my mother who had guided me for so long. In that fact’s sadness, I found joy in my new independence. My journey is now entirely in my hands to direct, and I feel more confident to take control of my circumstances without feeling like a subject of science, moved around like a chess piece.
It’s okay to be defined by x. That doesn’t mean it consumes you—it just means you have let yourself be shaped by the struggle to reach acceptance, the transformations that took place in your mind and in your heart, and the journey that led you to where you are today. But if you choose not to be defined by your diagnosis, disability, or difference, promise yourself that you will not forget from where you came nor who you were that made you who you are today.
