1
THE ORIGIN
Binary opposition: a system of language in which two theoretical opposites are set off or defined against each other. Life, to me, is much the same. I know good because I have known bad. I embrace joy because I have been hugged (read: practically strangled) by despair. I believe that for you to know why I move forward, why I am propelled instead of stagnant, you must know what once held me back. So letâs get the dark, icky root of my story out of the way, shall we?!
Let me take you back a couple of decades.
Iâm just barely a teen, and for a long time Iâve been feeling truly and utterly sick. I am permanently nauseated and exhausted and the pain I am in seems to intensify daily. I donât understand whatâs going on with my body, and Iâm now terrified of it. Iâm actually terrified of my own body. Back when she let me dance (which I love) and act and do karate and play musical instruments and go to school uninterrupted, I really didnât pay her much attention. I just thought she was normal, and we had a good relationship. But now, she and I are at total loggerheads.
Iâve been poked and prodded for months. Iâve been spending time in doctorsâ offices pooping in cups (honestly, why are those cups so small?), giving blood, urinating in cups (can we please have larger cups, seriously?), having ultrasounds, participating in very awkward conversations about all my private body parts, and having doctors question me over and over and over again about my symptoms. They talk over me, at me, but never to me about whatâs going on with my body. In fact, scarily, they donât seem to know whatâs going on, and that worries me a lot. Theyâre supposed to be the experts.
But here I am, back in hospital again, sitting in a pair of loose shorts and a baggy burgundy T-shirt that has the Ripcurl logo on it because, like most Aussie kids, I think surf brands are the peak of sophistication. Like all teens, I am very concerned with how I look. I have always been petite, but I am starting to look exceptionally gaunt now. Unprepared for this hospital visit, I have checked in with hairy legs, and I feel very self-conscious about this. Probably because this time, as I check into the hospital ward, I notice that Iâm being watched like a hawk in a way that feels intrusive and judgmental. Every piece of food that goes down (and inevitably comes back up or out) is documented, and I am followed to and from the bathroom, down those long, sterile cream-colored hospital corridors with zero privacy. I pee and poop with the door slightly ajar and always with an adult nearby.
The âbed restâ I am told will be helpful for me seems elusive to obtain in the hospital. I am awakened every twenty minutes or so by a flashlight being shone into my eyes, so my blood pressure can be checked, and so that new bags of unidentifiable liquids can be attached to the tube and needle in my hand. Doctors and nurses come in and out in a steady stream and look at my body. They talk to each other about me, but they donât actually talk to me. Itâs as if Iâm transparent or a ghost.
This isnât the first medical trip like this Iâve encountered, and over the last year, throughout visits to hospitals, specialists, and doctorsâ offices, Iâve heard so many variations of what supposedly could be wrong with me. Everything from âItâs just a stomach bug,â to âIt could be an ulcer,â to âItâs reflux,â or âItâs just stress,â as well as the old classic âThereâs nothing wrong with you; itâs just in your head.â The last one has been said more times than I can count.
When I check into the ward, I am given a blue sheet of paper with questions on it to answer for the medical staff. It comes with a chart that shows little faces in circles to indicate levels of happiness or unhappiness. I am asked to match what I am feeling to the corresponding face I associate it with. I am bluntly honest on the form. I am not in a good place. I am deeply upset and scared that this is the peak of my life and things are never going to get any better. I figure the more I tell them, the easier it should be for them to help me. All I want is an answer. I want to know what is wrong with me.
Once I have handed this form in, I am visited by a couple of doctors who ask more probing questions about what I eat and when, and question me vigorously when I mention I am in pain all over my body as though they are looking for a kind of âproofâ I seem unable to provide. They look at each other as if they canât compute my answers. You see, I was expecting this honesty of mine to help them find the logical answer to what was happening to me, but as it turns out, it seems to have steered them the wrong way. Theyâve taken my sadness and fear and my inability to eat properly due to my pain and nausea to mean something entirely different from what I know it to be. The fun new label being thrown around, among others, is âeating disorder,â so when Iâm being watched by the medical team, itâs actually more like spying. They donât understand how much I have internalized my pain and sickness, how ânormalâ this abnormal situation has become for me. The more I have to defend myself, the warier I become of the medical staff. I feel betrayed by them, and I no longer trust them to help me. I donât even know if this potential new diagnosis of an eating disorder was mentioned to my parents, but for some reason, I now feel like I have done something wrong and donât mention it to them when they visit me. I donât feel like a human being anymore. I am now considered âsick.â I am an annoying puzzle with pieces missing, a burden, a bother, a number, a patient, but definitely not human.
The assumption is Iâm either doing something wrong or I am stressed. I donât ever recall feeling as though the medical professionals acknowledged that I was suffering, very scared, and in need of help. I offer up a range of suggestions of what my sickness could be, primarily because I donât feel I am being listened to, that I am not being taken seriously. But I am dismissed or questioned, and every insight I try to give about what is happening is overlooked. I am convinced that the medical professionals are missing the pointâthat I am the one living like this, and I know my body better than they do. I know what is happening is not normal and canât be explained away with a shrug. I know Iâm not making any of my symptoms up, but I also know that when I describe it, the list is so long that it does sound like a farcical script.
I know that when I rattle off the entirety of what I am feeling physically at times, the adults get this glazed look over their faces, their mouths seem to tighten up, and I can see that it bothers or frustrates them. When I say that my whole body hurts; that anything I eat causes me pain, vomiting, or diarrhea; that my skin sometimes hurts; that my eyes smart; that my mouth is constantly filled with ulcers; that my neck is so tight it feels like my head will snap off if I turn it; that the word tired doesnât come close to the fatigue I feel; that my head pounds relentlessly; that there are so many types of pain going on in my gut that are new to me, ranging from sharp and stabbing to dull and cramping, that it feels like there is liquid fire in my throat and huge bulges that form in my stomach and move around and then disappear again; that I feel like I am starting to lose my memory or my mind, as I forget things all the time and feel totally out of control; and so many other symptoms . . . Well, you, too, might have a glazed look just by reading that list.
I am also sick with colds, sinus infections, and other viruses repetitively, and I seem to go from one illness to the next without a gap. My life seems like a cycle of visits to doctorsâ offices where I am handed yet another prescription for antibiotics or told condescendingly that it âis not that bad.â However, all the standard tests theyâve run just donât seem to add up to anything that makes sense to them.
I have done what was suggestedâto press the button on the remote attached to my bed if I need helpâbecause my stomach is as hard as a rock, swollen to the point it hurts to breathe, and the pain and nausea are intolerable. I am in relentless agony, and each time I let them know something is wrong, I am told I am constipated, or too stressed, or too young to be having these symptoms. Furthermore, I am told that I should be drinking more water and trying harder not to let myself become upset. All of the other pains I report seem to be ignored as irrelevant. It seems that, no matter what symptoms I face, they are my fault or I am too young to be experiencing them, and apparently, I should know this already.
I am aware that I am a difficult puzzle that the doctors need to solve, and as my symptoms can vary from minute to minute, I know they think I am making it hard for them to do their job. In fact, this has been expressed to me many times in varying forms. âOh, you are a tricky one, arenât you?â âYou are not making our job easy,â and âIf you would just eat something, you would probably feel better and we might not be trying to work this out for you, young lady,â often delivered with a wry smile, are the kinds of comments physicians and nurses make when I vocalize anything I am feeling. As a r...