The ride home with Mom was spent in painful silence. Neither of us could come up with anything to say. But in my head there were incredibly noisy screams of fear, anger, confusion and uncertainty. What the hell was I going to do? I had nothing to base any decisions on or for that matter, attempts to find information to help make decisions. I didn’t know what to do. I was sent out into a foreign world without directions, instructions, or resources. I had no place to feel grounded, and certainly no frame of reference to what to do next. I had no idea where to take a first step, albeit a very unstable one, to find help. There was only grief gripped noise filled thoughts of what will never be again, what I had just lost, what I was about to lose. Little did I realize how that noise was going to magnify as my days, weeks, months and even years, began to unfold.
I was consumed in a daze. I was so exhausted. Not just from dealing with the changes in my physical functioning but from the emotional turmoil my mind was in. I denied what was happening. I just could not believe it. I was really angry with myself for not standing up for myself, for asking for help and, for seeking resources that might have helped me. I was scared. Not just an uncertainty scared but a deep down feel it in my bones terrorizing 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. Not even my own reflection was still, it bounced and blurred just like everything else.
I felt separated, as if I were in two different places at one time, as if I were two different people. One remained in the place that always was and the other floundered in what was now. Each thought, step, plan and movement I attempted wanted to set out in a pre-disability manner – the way it was when I didn’t have to think about it, when I just did it. But now I had become swallowed in having to think about every single step needed to make my way from one place to another. My world was a stranger to me and I was a stranger to my world.
My home became an obstacle course, one that challenged me daily. Without any sense of balance I had to force my way up and down stairs, around furniture, through hallways and around corners. I felt as if I were in training for a marathon of obstacle courses! I stumbled, fell, bumped into and crashed over things that had been placed in a manner meant to be pleasing to the eye and functional for the soul. But now, everything stood out and presented itself to me as something that wanted to trick my soul.
I found my way through my home using touch points. Every pathway I worked out needed to include something to touch along the way, something that I could grab and hold on to. Without this mental mapping, I felt absolutely no sense of grounding. I literally felt as if I were being sucked out into space, without any sense of gravity, tumbling endlessly without a place to land.