I want to unpack some of the common phrases we hear from disabled people about disability.
“Life goes on.”
What does that mean, really?
Most people know what it feels like to have your heart broken; I don’t just mean romantically, although that is certainly included. Heartbreak can also come from thing like losing a job, losing a loved one, losing some sense of yourself that you always depended on that is now suddenly, somehow, gone forever. Heartbreak can come to us in many ways.
What happens in the minutes, hours, and days that follow the first shock, the first state, of heartbreak? I want to be literal about this: what happens following that moment of heartbreak, a moment that can come from either an immediate loss or from the realization of that loss?
The first thing that happens is you go into shock. If your loss is physical, your body experiences certain symptoms; if your loss is emotional, many of the same things happen.
Your autonomic nervous system slows your heartbeat, which causes blood pressure to drop. Some people end up fainting from this. Sensors in your blood vessels tell your heartbeat to increase, and it does so weakly, to try and compensate for the loss of blood pressure. Oxygen intake in the lungs decreases, causing rapid breathing. And the sweating – God, the sweating – is also caused by the heightened activity of the autonomic nervous system. The phone call made to me by my mother out of the blue telling me that my father had died produced an immediate sheen of moisture all over my body. I am not someone who sweats easily; as I raced around my house throwing things together into an overnight bag, beads of sweat ran down my face and my back, and it felt like someone had stuck needles into my armpits. It felt as if my body temperature had gone up ten degrees in an instant.
The present moment is no more present in our lives than when something incredibly intense is happening to us. The bottom of the inner well of our soul seems to shoot downward, and everything that happens around us is charged with meaning. Our bodies release hormones called catecholamines, which include adrenaline and noradrenaline. These hormones can increase the availability of intuitive, instinctual and spontaneous actions. Having done many powerful drugs in my life, I can tell you that the shock of a large ingestion of a psychedelic is not dissimilar. And like a powerful psychedelic, while the chemicals that are released during shock may be the same in every body, different people may experience the effects in very different ways. Sometimes we may look down at our hands and find that they are doing something we’re not aware of, or it may be that everything our hands do seems to exist in a sort of superreality where our sense of touch is greatly magnified. Sometimes it can be both at once. The end result is that the way we normally do things, the way we normally experience things changes, and it can feel as if someone else has taken up residence inside of us. Our minds watch as our bodies and brains keep going even though the landscape around us, or inside of us, has completely changed. We become unmoored as the floor beneath us, the floor on top of which our identities are built, gives way.
Time marches on even as we are suspended from it. How is it that the rude sun still rises? When my father died suddenly from a heart attack at 55, my family and I sat in the hospital grieving room where the hours passed like minutes. When they finally let us into the room where his body lay, we were told we had an hour. An hour, a small nothing bit of time. My mother and I sat on either side of him, holding his hands, soaking in the feeling of being with him again. The time came when we had to leave him; that is, the time came when they had to start dealing with his body. My mother and I each said our private goodbyes in the room. When I had entered the room I was a daughter with two parents; I left with only one.
Who am I, we ask ourselves, now that all I know is changed, gone? If my child no longer lives; if I finally understand that the person I love most in the world is no longer standing next to me, and never will again; if pieces are blown away from my body? If I am no longer Dad; if I am no longer Wife; if I am no longer Whole?
This last one is what I experienced after the car accident that left me paralyzed. I could no longer feel half of my body, but wasn’t I still me? I remember laying in ICU and thinking: What part of my body is me? If I lose a fingertip am I still me, or am I someone else, if only slightly? No, it’s just a fingertip. What about a whole finger? A thumb? How much would I have to lose to cross over to being someone else? I can’t feel my hips, my legs, my ass, my feet. Where did they all go? I can see them, but where are they? Due to shock and heavy drugs, at this point I had not yet come to terms with the implications of my injury. It took me a while to begin to realize that not only had half my body apparently disappeared, but key parts of my identity that were so ingrained I didn’t know they were me had gone as well. I was a tree-climber, a swing-dancer, a floor-sitter, a ground-sleeper, a beach-walker, a forest-hiker. Wasn’t I?
After ICU I began to give half my lower body its own identity. I apologized to Legs when I dropped them; I told Legs to cooperate when I was trying to put my pants on; Legs was the one I yelled at and sometimes struck with my fists as they jumped, jolted and shook as I tried desperately to fall asleep.
Sleep. The last bastion of escape. The first silence in the scream of trauma. It was a blessing and a curse; sleep rested my exhausted soul that was working so hard to put things back together somehow, yet it set the stage for that coming waking moment, the one where I didn’t yet remember how things had changed, and then came realization like a cold, heavy, sopping wet curtain over my heart, like barbed wire wrapped around my brain.
That first waking moment is the beginning of “life goes on”.
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