Questions, Confusion, Fear, Discovery
The ride home with Mom was spent in painful silence, but in my head were shouts of fear, anger, confusion and uncertainty. I sobbed most of the way home. It was new kind of sob, one that my diagnosis set fire to a grief and longing I’ve never felt before. I felt tangled and stuck in questions on a search for to what to do next. These questions were those I never had a reason to ask; after all I was once “normal” so how could my past life experience connect to any answers. I was stalled in an empty reserve of nothing.
With my diagnosis clear, I was discharged without a lot of instructions. However, I was referred to Dr. Mark Pyle, an Otolaryngologist, a renowned specialist of the ear, nose and throat at University of Wisconsin Hospital and Clinics. Dr. Pyle took over where my diagnosis left off becoming my permanent and long standing physician and the one who became my link to a remarkable man. Even so, with a newly authenticated diagnosis to what was wrong with me I became a fugitive on the run from the truth. I tried to run away from the scheme of never being me again and accomplishing the million things my body was never going let me do. The authenticated diagnosis completely changed my wondering what was wrong with me into a confirmation of what was wrong with me. This ignited a completely different progression of intensified emotions, fear, shock, anger, and blame.
I slipped into a frightened speculation of what my future held and what I would lose in the future. I accumulated a vivid comparison between what was stolen from me and what was infused in me. Obsessed by comparison, I set off a fist fight of dispute between the crazy mixed up bullshit world my life was sentenced to and a dire need for a guide to help me find my way to an unknown destination.
I spent the weeks that followed in a shocked daze. Everything about me was exhausted. Not just from dealing with changes in my physical and biological functioning, but from the emotional turmoil my mind was in. I was continually haunted by what my body used to be able to do and tortured by what it was reduced to.
I denied what was happening. I just couldn’t believe it was happening to me. I ignored the word permanent by putting on a false happy face that nothing was permanent at all. I was so damn angry for not standing up for myself and the care I needed. I was so damn angry feeling none of this would have happened if I would’ve had the care I needed for my unmistakable need to heal. I blamed my inadequate self worth for letting this happen to me and I blamed the medical system for overdosing me.
I was scared. Not just an uncertainty scared but a deep down feel it in my bones petrified scared. I was afraid of myself because I didn’t know who I was anymore. I saw the same person in the mirror but that reflection was as unstable as my walk and as blurry as my bouncing vision. The person looking back from the mirror wasn’t me, it was a total stranger.
I had this sense I was in two different places at the same time, like I was two different people. One who stayed behind in a world that was perfectly aligned to existence, the other floundering in a fog of bitter haziness. Each thought, step, and movement conflicted with my 39 years of learned behavior – the way it was when I didn’t have to think about it, I just did it. That disappeared by being overpowered with the overwhelming task of learning all over again. My whole world became foreign to me and I was an outsider.
Even before my diagnosis my home had morphed into an obstacle course. Amid my loss of balance and unstable vision I struggled my way up and down stairs, past furniture, through hallways and around corners. It was like training for a marathon! I stumbled; fell, bumped, and crashed into things and started over and over and over again.
My home was decorated with things meant to be pleasing to the eye and functional in their purpose. Now all I saw was a bouncing unrecognizable blur of shapes and color.
Then I had this sudden realization that within me was a vivid memory of the layout of my home and thought what would happen if I used those memories to reconnect with it. So, I tried it. I sat on the couch to get as I still as I could and used my memory to visualize how my home and contents were positioned together. This self devised approach lessened the exhausting efforts of maneuvering from one place to another, why hadn’t I thought of this before? I was too preoccupied… It was then that realized my home was the only safe place I could be, it was the only place familiar to me.
Then as I made my way around the house, I discovered how using touch made me feel a little bit more grounded. I touched everything I could. I leaned against the counters to do dishes, to prepare and cook meals. I touched something while doing everything. That’s when I first understood how important touch was to me. Without it, I literally felt as if pulled into outer space and dropped through the floor at the same time. Without touch I lacked a connection to anything. I wondered that if a simple touch could convey just a little bit of a connection to my surroundings, perhaps there was a way to feel just a little bit more connected to the stability that my new life forced me to leave behind.