Lately, I’ve been thinking about the beginning of this journey. When I go back, it gives more perspective to where I am now.
In the beginning, (and when I say “in the beginning” I mean several weeks to months) I teetered on the edge of disbelief alternating with facing stark reality. I knew the implications both short and long term, and I didn’t want to accept the possibility; yet something in me felt I had to “do something”, to intervene, to fix it. Angry, depressed, sad, paralyzed - these are a few of the words to describe how I felt.
Some days, I could barely stir myself from the pillow; other days I was focused on trying to figure out how to sell the house, how to get a job, how to keep our healthcare – trying to get a handle on how we would manage financially and prepare for an uncertain future. Everything seemed up in the air – and those earthly things I had depended on for security – spouse, health, job – were no longer stable; things had changed in a moment it seemed. And I knew deep inside me a burden unlike anything I had previously experienced. I often could not pray anything more than “why” and “help me”.
God seemed very silent, but maybe I just couldn’t hear because I drowned out His voice with my own cries for deliverance. Frankly, I was often very angry with God, even though I knew that I was utterly dependent on Him. Thankfully, He is a God who understands the human condition and is willing to extend His great mercy until we can fall on our faces in recognition of His love.
Our children were in their worlds trying to come to grips with what I’m sure felt unreal and impossible. How could something so potentially devastating be true for their father? How could this intelligent and loving man be destined to live out his days losing his reality?
We attempted to share the situation with family and friends, from time to time.
I didn’t feel anyone really “got it – and in fact, I think few, if any, did get it. Maybe they thought his memory was already gone, or the mental picture of the future was too grim. I felt a wall between myself and others . At the time, I wanted someone to allow me to express my feelings without possibly judging my lack of faith and without brushing the diagnosis off casually in an attempt to make me and them feel better. I suspect I wore my angst like a blanket, and probably not a very attractive blanket.