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There There

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Tommy Orange

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“Six horses died in a tractor-trailer fire. There. That's the hard part. I wanted to tell you straight away so we could grieve together. So many sad things, that's just one on a long recent list that loops and elongates in the chest, in the diaphragm, in the alveoli. What is it they say, heartsick or downhearted? I picture a heart lying down on the floor of the torso, pulling up the blankets over its head, thinking the pain will go on forever (even though it won't). The heart is watching Lifetime movies and wishing, and missing all the good parts of her that she has forgotten. The heart is so tired of beating herself up, she wants to stop it still, but also she wants the blood to return, wants to bring in the thrill and wind of the ride, the fast pull of life driving underneath her. What the heart wants? The heart wants her horses back.”

“I should have felt something—a pang of sadness, a twinge of nostalgia. I did feel a peculiar sensation, like oceanic despair that—if I were in a movie—would be depicted superficially as me shaking my head slowly and shedding a tear. Zoom in on my sad, pretty, orphan face. Smash cut to a montage of my life's most meaningful moments: my first steps; Dad pushing me on a swing at sunset; Mom bathing me in the tub; grainy, swirling home video of my sixth birthday in the backyard garden, me blindfolded and twirling to pin the tail on the donkey. But the nostalgia didn't hit. These weren't my memories. I just felt a tingling in my hands, an eerie tingle, like when you nearly drop something precious off a balcony, but don't. My heart bumped up a little. I could drop it, I told myself—the house, this feeling. I had nothing left to lose.”

“Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.” “Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it. Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it. But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone... A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.”

“Bellamy found simply living a task of amazing difficulty. It was as if ordinary human life were a mobile machine full of holes, crannies, spaces, apertures, fissures, cavities, lairs, into one of which Bellamy was required to (and indeed desired to) fit himself. The machine moved slowly, resembling a train, or sometimes a merry-go-round. But as soon as Bellamy got on (or got in), the machine would soon eject him, sending him spinning back to a place where he was once more forced to be a spectator. Perhaps, that was in some mysterious sense his place, his destiny. But Bellamy did not want to be a spectator, nor could he (having no money of his own) afford to be one. Moreover he had never really mastered the art, apparently so simple for others, of passing the time. His failure to find a métier, to find a task which was his task, caused him continuous anxiety, nor did it occur to him to emulate the majority of mankind who positively resigned themselves, seeing no alternative, to alien and unsatisfying work. At one time he had suffered from depression, and was nearer to despair than his friends realised.”