learning to deal
my skin hurts, burning with a slow prickling heat like the nastiest sunburn ever, so that even my clothes (even the softest bamboo knits) and sheets (washed silk as cool to the touch as water) make me writhe in pain. my vision is limned with tiny swirling black and green pixelated patches, and my head aches with the same sick sloshing sensation as my belly. i dislocated my shoulder with my own purse a few days ago, and the joints in my feet feel like live coals are embedded in the marrow of my bones. my sleep is endless and unsatisfying, and i forget about a third of the words i want to use when i speak.
i live on ginger ale and narcotics.
the touch of my beloved's hands makes me whimper more often than not, and not in a good way; i can only walk for thirty minutes before my body fails me and whatever expedition we were on must end in bedrest. sometimes i fear that our life together will be more like patient and caretaker than lovers. i want more for him than i can ever give: the energy of a person in her prime, an outlook full of hope, the ability to be a happy and healthy mother to whatever children may come to us when we open our home to them.
my mind whispers to me that the long downward slope of sickness will take anyone i love with me on its slippery slide; that it is just as bad to be addicted to not being in pain, even for a few hours, as it is to be directly addicted to the meds (junkie, junkie, junkie: sometimes i tell the world to fuck itself and take my pills with a very fine scotch, just to have a moment of pure pleasure); that i do not have the courage to face this, and soon my mind and heart will begin to erode along with my body, losing the ability to think and feel even as i lose the ability to move or speak fully and correctly, leaving me with a range of emotion as limited as my range of motion: bitterness and a wheelchair. is that what i will be in ten years? five?
sometimes i think death would be a kind of mercy, but then something wild and ferocious rears up within me and snarls: i will have my life, such as it is and such as i can make it, i will have it to the last drop--but i fear that lupine voice too because i do not know what i would do (who i would become) to satisfy its hunger. the wanting burns deeper than my skin, deeper than my bones, to carve some kind of victory out of this. i want courage as much as i want healing, maybe more (because honestly, at this point i do not know who i would be if i were well, what i would do with a body that was something more than a junker transporting my mind from situation to situation). god, how i want to be brave. but mostly i am not. stoic is as close as i can usually manage. it could be worse: for most people on the planet, it is. i wish i could transmute my pain and struggle to bear it well into some kind of metaphysical currency to barter for the lives and liberty and happiness of others. offer it up to the baby jesus, they taught me in school. tom mcrae is my answer to that.
and this? somehow this crying in the wilderness of the ether soothes me. someone may hear, someone may know. and for now, just for now, bitching lances the pain, gives me the will to fight back the despair, and lets me see myself in all my ridiculousness. so for now i am ok, i am alive, i am learning to deal.
besides, the cherries are blooming.
i live on ginger ale and narcotics.
the touch of my beloved's hands makes me whimper more often than not, and not in a good way; i can only walk for thirty minutes before my body fails me and whatever expedition we were on must end in bedrest. sometimes i fear that our life together will be more like patient and caretaker than lovers. i want more for him than i can ever give: the energy of a person in her prime, an outlook full of hope, the ability to be a happy and healthy mother to whatever children may come to us when we open our home to them.
my mind whispers to me that the long downward slope of sickness will take anyone i love with me on its slippery slide; that it is just as bad to be addicted to not being in pain, even for a few hours, as it is to be directly addicted to the meds (junkie, junkie, junkie: sometimes i tell the world to fuck itself and take my pills with a very fine scotch, just to have a moment of pure pleasure); that i do not have the courage to face this, and soon my mind and heart will begin to erode along with my body, losing the ability to think and feel even as i lose the ability to move or speak fully and correctly, leaving me with a range of emotion as limited as my range of motion: bitterness and a wheelchair. is that what i will be in ten years? five?
sometimes i think death would be a kind of mercy, but then something wild and ferocious rears up within me and snarls: i will have my life, such as it is and such as i can make it, i will have it to the last drop--but i fear that lupine voice too because i do not know what i would do (who i would become) to satisfy its hunger. the wanting burns deeper than my skin, deeper than my bones, to carve some kind of victory out of this. i want courage as much as i want healing, maybe more (because honestly, at this point i do not know who i would be if i were well, what i would do with a body that was something more than a junker transporting my mind from situation to situation). god, how i want to be brave. but mostly i am not. stoic is as close as i can usually manage. it could be worse: for most people on the planet, it is. i wish i could transmute my pain and struggle to bear it well into some kind of metaphysical currency to barter for the lives and liberty and happiness of others. offer it up to the baby jesus, they taught me in school. tom mcrae is my answer to that.
and this? somehow this crying in the wilderness of the ether soothes me. someone may hear, someone may know. and for now, just for now, bitching lances the pain, gives me the will to fight back the despair, and lets me see myself in all my ridiculousness. so for now i am ok, i am alive, i am learning to deal.
besides, the cherries are blooming.