When the tests were finally completed I was told that the doctor would be in shortly to talk to me about the results. I needed to use the restroom and on my own made my way to it by hanging on to the walls. On my way back to the examination room I met the doctor in the hallway. As I leaned against the wall with my hands fiercely gripping its rough and cold surface, it was there that I was told the most life changing news I would ever hear.
I remember with extreme vividness that exact moment. There in an unending confine of a hallway I was told that I would be living the rest of my life without a sense of balance, without knowing where I was in space and that I would never be able to see things clearly and stably again. I still recall the bouncing steel blue color of the doctor’s eyes as he told me the life I had come to know and relate to so well had ended. I still feel the texture of the wall I was clinging to, its roughness and cold demeanor. I can still sense the people that were passing by as I sobbed through the words the doctor was telling me. The sounds and smells of medicine were everywhere, mingled around words of permanent, you’ll get used to it, there’s therapy available to help you cope, it will improve as the years go by, usually within 20 years people get used to it… The word permanent was the worst for the moment it left the doctors mouth and formed its wound within my comprehension, it removed all that I had ever come to know and understand about my relationship with the world and replaced it with a fear I have never experienced before. In just one word, everything changed and with that change an indescribable sense of despair of not knowing what to do next swallowed me. I became paralyzed in fear and uncertainty. I became blind to the surroundings I had been put in, mute to questions and deaf to answers. The doctor kept speaking but all I could hear was “permanent”, all I could feel was “permanent”. I felt as if I was suffocating and everything seemed to disappear from my comprehension and I felt swallowed by that horrible nothingness. It was surreal, it was terrorizing, it was packed with physical, emotional, and perceptual noise.
When the doctor finished his presentation I was left standing there, still holding onto the wall with tears streaming down my cheeks. I was stunned and for a long time I couldn’t move. As patients, nurses and others passed by me, I felt my first feeling of being an oddity on display. Then I asked myself, “why didn’t the doctor have the decency to take me to his office to tell me this life changing news”? Finally, in a daze left to my own defenses I somehow found my way out of the clinic and back to my mother. All I wanted at that moment was my Mom….
It took forever to walk down the hallway from the spot the doctor handed me my life sentence. I found the railings in the next hallway and felt relieved when I saw them. I grabbed a strong hold in an attempt to not to let anyone in on my discovery. It didn’t work as from my perspective, the railings were just a prop and if I let go, I would fall. The railing was my only grounding to not falling over or sliding off my world like one would out of the side of a tilted plane. I came upon a hallway intersection and the handrails ran out… I recall standing there in sheer terror thinking how I was going to get from one side to the other without falling. That was the first of the never-ending series of noisy thoughts that I went through every time I attempted to move in my world. From that moment on prior to each time I set course to move I had to literally map out my route to find points of reference and things I could hang on to as I went from point A to point B. My life suddenly became a work of developing a continuous series of self made maps.
Exhausted, I made it out of the clinic and to the car where my Mother went to wait for me. I got in the car swallowed by a cloud of confusion, disbelief, and a longing for it to all just be a bad dream. I sat there looking straight ahead with tears streaming down and at a loss for words to describe what had just happened. Mom asked “well, what did they tell you?” I replied, “It’s permanent, there’s nothing that can be done, I have to live this way”… Mom replied, “there’s nothing, no medicine, no surgery?” … “No Mom, nothing….” This is when the noise began to roar…