I didn’t exactly have one first waking moment of realization. I kept alive for a few weeks the hope that my body, my spinal cord, would heal itself.
I still have the journal that I wrote in during this time, and one of the pages makes me so sad for the person I was. “I am healing my spinal cord. I am healing it in a normal, natural way. I am healing my spinal cord in a normal, natural, magickal way.” I was at a point in my life when I was surrounded by magical thinking: if you believe in it hard enough, if you are unfailing in your positive attitude, it will come true. Star-wishing for grown-ups. After going through more than a few periods of grief I’ve realized that denial is a powerful coping tool. Our minds cushion us against the rising tide of realization, desperately trying to ease us in to the cold water of our changing lives.
Eventually there comes a point when we can no longer hold the dam. For me, it was the first morning home. After two months of sealing myself tight, I woke up screaming. My boyfriend started awake and my mother ran in to the room, thinking that there was something horribly wrong. Which, of course, there was. Stark, blank, white terror had finally descended. I found myself anchorless, completely unmoored from who I was. There was nothing solid for my mind to hold on to.
The death of my father, however, brought a very different kind of fear, one that existed outside of myself because this time I was not center-stage; my mother was. I woke up each morning wanting to be by her side. I stayed with her during the first month he was gone, loathe to leave her alone for even a few hours, until our old patterns of animosity started to come back and I could no longer support her because I felt like she was digging out the ground beneath me. I had, after all, lost my father, but I hardly gave my side of it a second thought because I was so focused on supporting the one who had lost her husband. I held her more than once while she cried over becoming a widow, but I have never let myself cry in her arms over becoming a fatherless daughter. The closest I have come is lying in bed by myself while I imagined her holding me as I let out my own grief. Perhaps she would have done so if I had gone to her – then again, she might not have, and I have never had the courage to gamble on that one. We have a complicated relationship.
After my spinal cord injury, I fought moving forward as much as I could. Moving forward meant going through the pain of exposure; staying in my parent’s house was so much easier than setting out on my own. Besides, I didn’t know how to do anything. The two months of rehab were not nearly enough to prepare me for my new life, but, you know, insurance. I hid for nearly three years, isolation working on me like water works on stone: it slowly shaped me, imperceptible from day to day, until I became a shut-in, only leaving the house to go to the store and even that was almost too painful. The stares seared into my skin like lasers. Outside the house, I couldn’t concentrate, each stare pulling a thread of my attention until my mind became a spider web of unfocused thought; it is very difficult to ignore someone who is looking at you. I think we are hard-wired to respond to another human watching us.
Metaphor saved me during these times. I connected being watched all the time to being on stage. Once I had matched this new experience to an old one I discovered that I had a framework for dealing with it. Instead of addressing each stare as it came along I learned to merge them with one another and turn them into my audience; I could be aware of them without feeling as if I needed to pay attention to each member individually.
Loss changes the way we look at the world, and it changes the way the world looks at us. Perhaps a big component of moving on is learning how to deal with these new perspectives by sifting through our past experiences until we find something that runs parallel, and once that something is found we can apply to the new situation knowledge that we already have. Something that was once unrecognizable, and therefore impossible to deal with, becomes something more familiar, a shape we can finally begin to put our arms around.
Moving on is a learning process. You have to learn how to move through the world as your new self, whether that new self has a freshly broken heart because a romantic relationship has ended or that self now has an amputated arm from a war injury. You may feel frozen, but time keeps on going, and eventually it begins to drag you with it, whether you want it to or not.
When people who have acquired severe disabilities say, “Life goes on,” able-bodied people often react with disbelief, not because they think we are liars, but because they cannot – or, more accurately, choose not to -- imagine life going on. It’s my belief that this lack of imagination is part of what spurs some people to tell me that I’m an inspiration; they do not make the effort to imagine what it must be like to deal with the disability, so the process remains, to them, something magical and hidden, a unicorn of life, a mystery to wonder at, an “I don’t know how you do it” and a shake of the head, when the banal fact is that yes, actually, you do know how we do it, or you could at least come up with a reasonable idea of how it is done. But it is more fun to look at it the other way.
The mystery of “Life goes on” in regard to disability must be stripped away if we are to be seen as equal human beings instead of the paradoxical, pity-inducing yet inspiring and diaphanous creatures that society makes of us. Anyone who has been labeled “hero” knows how such a thing immediately separates you from everyone else. Have you ever noticed that everyone who becomes a hero almost always denies it? Is it simply pure modesty, or is it also a plea to not be singled out from those around you?
Life does go on, for all of us. When people deny the knowledge of how that is possible, they deny a person’s humanity. They sever the connection; they create the “us” and the “them”. We all go through difficult times and come out on the other side. Most of the time only our minds change, but sometimes our bodies do, too, leaving permanent, visible reminders. And that’s OK.