"The Pain of It All"

Questioning My Reality

By Avery Ray

Another year has gone by, as I sit and contemplate my life with disabilities. To be exact, November 9, 2005 made twenty-three years; filled with pain, disappointment, and yes, lonliness. How do I survive? Some would say faith, or stubborness, or perhaps, "too danged onery to lie down!" Whatever the case may be, I am still here and grateful for the abilities I still possess. Of course, I still miss all that I have lost over the years.

How do I describe the mind-numbing pain, let alone the struggle of accepting my life as I now know it? As I awaken each day, I wonder not ‘if’ I will have pain, but ‘how much’ pain. Each waking moment is another decision to make. Each chore I decide to accomplish brings about more pain. How much will be too much? Where does it all end?

As I pass each milestone, I wonder how I continue to deal with the consequences of one innocent, silly mistake. We all have our little tricks to survive the un-thinkable (‘we’ being people with chronic pain). I keep telling myself, ‘this is another lesson learned. This will make me a better person, able to help others along the way. ‘ But, who is there to help me?

When the screaming stops and I realize it has come from my lips, who is there to hear it and wipe the cold, clammy sweat from my brow? As I lay here in the fetal position, not daring to move, and God forbid I cough or sneeze, who hears my cry for help? My back has locked again, and I cannot move for the next three days. This may be the one. The episode which leaves me paralyzed from the waist down. Then what will become of me? How will I eat, or go to the bathroom? Who will attend to my personal needs? Will I ever be able to dance again?

This is only the beginning of my daily troubles. As I am typing this account, my right arm is being ripped apart with pain. You see, I have a disc in my neck which likes to slip out of place. Each time this happens, which is quite regular, at least one if not both my arms go numb, tingling, and screaming with pain. It matters not whether I attempt to accomplish anything, the pain will be there all day. Some times, the arm will curl up to my side, and I have to wait for it to pass, or force the arm back down to the proper position. Throw in a bit of carpal tunnel syndrome, and I wonder why it takes me so long to type anything.

Now, for the really fun part of my typical day. As if the above were not enough punishment, I also have photosensitive seizures, of unknown origins. Picture, if you will, a drunken man, staggering around, bumping into doorways and furniture. Picture headaches so bad you want to scream, and you often do. Watch as I hold my head so it won’t explode. Watch as I pass out from too much exposure to light. Isn’t light supposed to be a life-giver? Listen as I try to think and talk, only to forget what to say, let alone how to say it. As my slurred speech spills from lips out of control, or the drool leaks from the corner of my mouth, gaze upon what is left of a once vital young man. Maybe we can play the old game, ‘catch me if you can’, as I fall from my chair, and curl up in a ball. Maybe someone can catch my cigarette as it falls from useless hands. Or, perhaps, they could cut up my food after I keep dropping the eating utensils? Could I possibly ask someone to chew for me, when I keep biting my tongue or cheeks? Ah, but this is still not the worse part.

Imagine the feeling of total uselessness, added to the fear of being alone when all this happens. What of the embarrassment of not knowing what your body will do next? How soon will the seizures become so bad I lose control of my bodily functions? Will this happen within the confines of my home, or out in a public place, for all to witness? What if I fall and hit a coffee table, rendering myself unconsious, or worse, splitting my head open?

All this happens every day of my life. Over the years, I have become accustomed to the pain and inconvinience of my disabilities. This has become ‘normal.’ As the pain and seizures increase, so too does the worry and fear for my future.

As challenges go, mine may not even begin to compare to those of others. But, for me, they are very real. I have little to look forward to, physically. But, I will continue to survive and help others as much as humanly possible. I will use what gifts I have been given for the betterment of life for people with disabilities.

Just my thoughts,

Avery