I awake, as usual, hungry and paralyzed.
My aides have carefully set out bits and pieces of a breakfast to assemble-a bowl of cereal on the counter; a two handled cup of milk in the refrigerator ready to pour; an empty coffee mug on the Keurig awaiting the perfectly sized, premeasured cup of coffee; a bowl of berries.
At first I feel too weary, probably because it is Friday, to roll out to the kitchen and put all of this together. Today I would rather meditate. I think to myself – I would rather do nothing.
I feel the hunger gnawing at me. Not the uncomfortable real hunger of the food deprived, but a gentle nudge reminding me that I haven’t eaten in hours.
And really what is the big deal about that?
For some reason I remember waking up one morning shortly after my accident. The family dog was draped around my lower body. I forgot that I was paralyzed. I told her to move so I could get out of bed. The dog, a mixed breed of Labrador and Beagle, looked at me with sad brown eyes and refused to move. She was in protective mode, as she had been since my accident. She knew better than I that I would not be “getting out of bed” in any conventional way. She wasn’t anticipating sudden moves.
Get off of me I insisted. I tried to push her with arms that were also paralyzed. She licked my face, then sighed and placed her paws on my stomach.
I looked down at my legs, appendages that weren’t moving even though I was willing movement. And I began to cry.
I cried because I was frightened of the unknown. Back then I couldn’t imagine waking up every day paralyzed. It was simply a phase that went away once I realized that waking up paralyzed was the same as waking up un-paralyzed.
This requires crafting new words, because our language doesn’t encompass the experience of disability. I suppose that’s why, when it happens to us later in life, we are so inept at first. Once we allow ourselves to adapt and let go of our preconceived notion that disability is a negative thing and living with it is a tragedy, our lives move on in good and positive ways. But it is moments like this-the fear behind waking up paralyzed-that come from assumptions, containing the pain of unnecessary ableist attitudes that are really unhelpful whether we are disabled or not.
Thinking back to that morning, I realized that I didn’t feel hungry. There was no thought in my mind as to what I would have for breakfast, whether it would be cereal, pancakes, or oatmeal. No smell of bacon would’ve lured me out of bed that morning. No, instead I laid back against the headrest, and breathed in unison with the family dog with tears in both of our eyes. That sad Beagle look reflected my own self-pity and misery. I was indeed paralyzed, but it wasn’t the physical paralysis that did it to me, that forced me to stay in bed. It was the ideas I had about being paralyzed that left me stuck.
Remembering that has made me hungry-not only for food, but for life. I want to move toward the kitchen, toward the morning,
I don’t feel paralyzed. I’ve rolled through the streets of more towns than I ever did when I walked. I’ve visited more places than before my accident, met more people, and tried more new things. Indeed my life was probably more paralyzed when I wasn’t paralyzed than it is now.
I’m certainly more in touch with my hunger now, a hunger for life. That happens when you almost die. Every day becomes a gift. And even when people around you don’t feel that way, it’s easy to ignore them. I can’t make them feel it, that hunger for life which propels me along faster than ever before. Ironically, they see the wheelchair, they watch me transfer slowly into it because I am a quadriplegic. Once deposited in my wheelchair, I move in my own way more quickly than them..
I move in my wheelchair like I am hungry. I am like a shark, never stopping. I caress my joystick. I move it in circles even when the power button is off my chair. I am always ready to move forward.
I’m not sure I want breakfast. I will drink the coffee. But that is all.
Feeling hungry is a good thing.