Saturday, 11 August 2012


A paraplegic writer * said, 
"I feel enormous inside.  The tremendous desire and longing I feel inside of me span oceans.  I am absolutely and heartbreakingly in love with life.  But this is not life."

Of all of the many faults I have, the traits about me that I am ashamed of, I am at least grateful for my own enormous capacity to be deeply in love with life.  I find pure joy in such simple things: human relationships and unconditional love; my evil and fascinating cats; my work which saves me; dropping a crumb of donut and watching the ants discover it; lying on my deck and watching the sun gild the leaves of the tree above me, or the deep stillness of space occasionally interrupted by the stunning ingenuity of humans in the form of a satellite, or the stunning vastness of the universe in the form of a shooting star; the beauty of the human form; learning about the insane realities of our physical world; going to the park with my husband last evening after a rain storm and simply letting the mist fold us into itself.

I feel such incredible satisfaction from the journey of life, an almost childlike fascination with the acts of/facts of existing, and the growing and re-evaulating and making sense of myself.  The tragedy of chronic illness, for me, is when I feel so sick for so long that my ability to enjoy these things I love so much is taken away from me.  I see them around me, I ache for them, but I can't have them.

I cannot find words to explain how completely my health has become entangled with who I am. Even if I tried, I myself would be unable to identify every thread, every nook of myself where it has settled.  I first became sick as a 13 year old; every single formative year of my life has been one more year that the constant disruption of the grinding, uncomfortable, distracting behaviors of my body have had the chance to more deeply twist their fingers into my psychology.  If I became completely well tomorrow, it would take years for me to learn to live as a person whose body doesn't require constant vigilance, attention, and accommodation.

At my worst I look into my future and wonder if I, like Clayton, the author I quote above, will also be forced to choose death (before it chooses me!), not because I want to die, not because I lack a miraculous love for life, but because the idea of enduring decades more of how I'm feeling is too much: caged in with only terrible options on every side.

Clayton felt inescapably imprisoned by the conditions his body forced him to live under, and the constant ache for what he wanted but couldn't have - he chose death because those conditions were unacceptable to him to an absolute degree and joy and happiness were not possible for him.

For myself, there are the two equally true parts of my reality.  Frequently I am still amongst the living; this is still life.  I don't live a truly "full" life, no; too many decisions have been made for me by my health and too much of myself is defined by it.  But for me the moments of genuine, euphoric joy and astonishment that I described come frequently amidst the grind of life, thus far at least, and I define my life as a good one, one never boring, constantly interesting, and well worth living.

How does one present that these opposing realities coexist to the world?  How does one authentically represent that Oscar Pistorious is fucking awesome, that triumphing over adversity is a true and genuine urge worth celebrating, without ignoring the grinding shit he might have to deal with in his daily life that he feels pressure not to discuss in interviews, maybe not to even dwell on himself?

I am both an explosively joyful person at heart who wants to triumph, and a person defined by suffering.


I am "fortunate" that in my case, unlike in Clayton's whose disability was permanent and absolute, the degree to which I am disabled waxes and wanes at least to an extent, and with it the level of sad hopelessness that I feel.  Still, because of the lowest lows I sometimes live through, I resonate with his sentiment, and despite that he seemed to find a wry acceptance of his solitary death, I wish that when he died I could have been there to tell him that he was dying with the dignity and autonomy that he - and we all - ultimately deserve.  I wish I, or someone, could've looked into his eyes so that he saw the soul of another human being and knew that there are others of us who also understand that he was caged, and who don't question that his reality did not allow otherwise, despite how we are currently experiencing our own lives.


For now, as if there aren't enough photos of flowers in the world, another something lovely I lingered to photograph today outside a store:

*Before you follow the link, know that the site contains a book written by a paraplegic whose disability caused unacceptable torture for him, and thus his words, though philosophical, coherent, interesting and deeply thoughtful, are also tragic, uncommonly intense and unflinchingly graphic, reflect the intolerability of his suffering, an absolute conviction that a happy life is impossible as a disabled person, and to some people are probably offensive.  The last few chapters also follow his journey to and through the final moments of, his own suicide.

No comments:

Post a Comment