I remember with extreme vividness the exact moment. In the confines of a hallway that ominous feeling I had from the start exploded: Ototoxicity, ear poisoning, permanent. I still see the steel blue color of the doctor’s eyes; I still feel the texture of the wall as I clung to its rough and cold demeanor. I still sense people that passed by, and taste my tears as I sobbed through words the doctor was saying. This was where the doctor told me the life I had come to know and related to so well had ended. There I was told the damage to my vestibular system was permanent. There I was told I would be living my life without a sense of balance, seeing things bounce and blur with movement, without a grounded feeling of where I was in space, and that “you’ll get used to it, there’s therapy available to help you cope, and I’ll improve as the years go by”. Then he said, “Most people show great improvement within 20 years”. 20 years…
From the moment the word permanent left the doctor’s mouth I felt stabbed by a sword that wounded my very existence. I was immediately separated from all I had ever come to know and understood about my relationship with the world. It smashed a fear directly into my soul, a fear I had never experienced before.
In that one word, I felt the permanency of a sudden physical, biological, emotional, and even cellular change to my very being. That change swallowed me into an indescribable sense of despair as I clung to that wall paralyzed in fear and uncertainty. I suddenly became blind to my surroundings, mute to questions and deaf to answers. The doctor kept speaking but all I heard was “permanent”, all I felt was “permanent”. I was suffocating as my complete self began to disappear. It was here that the sinkhole nothingness fully opened up sucked me down. It was surreal, frightening…dead.
When the doctor finished his presentation he left me standing there, still clinging to the wall with tears streaming down my cheeks. I was stunned and for a long time I couldn’t move. The nothing held me captive. Then I saw the doctor about to enter an exam room not far from where I was. I had just one thing to say to him; “How dare you tell me what you did in this hallway. How dare you change my life forever without at least taking me into a private area where I could feel some sense that I mattered.” He said “Sorry about that, I thought you’d want to know as soon as possible.” Then he walked away into another exam room and I returned to permanent.
It took forever to surface from where the doctor declared my life sentence. In a daze I found my way to a hallway where, thankfully, there was a railing to hang on to. I had my first sense of relief that there was something I could hold on to and experienced the first of many attempts not to let anyone in on the discovery. This was my first experience of trying to hide from disability.
The railings were just a prop and if I let go, the permanent would take over. They were my only sense of grounding to keep from falling over or sliding off my world as if falling out the door of an imbalanced airplane. Then, I reached an intersection of hallway where the handrail ran out… I recall standing there in terror thinking how I was going to get from one side to the other without falling. That was the beginning of a never-ending loop of intrusive thoughts each time I attempted to move in the world. It was the first of many mental maps I had to draw to locate blurry bouncing points of reference looking for what I could hang on to as I moved from point A to point B. It was the start of my movements becoming a constant assignment of starting life over in a new world as I tried to connect my brain, body, and every one of my senses to the environment around me.
I reached the waiting room where the receptionist let me know my Mom had stepped out to the car, she was a smoker. Instead of waiting for her to come back in, I worked my way out of the clinic to the car. I just needed to get out of there right then and now. I fell into the car cloaked in 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 Mom, 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….”