Four and one half years since the onset of encephlitis. So much has changed and so much has stayed the same. Even as you improve you deteriorate. Even as you stabilize you are in a constant state of flux. In so many ways you are more independent than you were and in other ways you are more needy. One thing that's constant in all this is we all "keep on keeping on." For that we can all be grateful and proud.
The fact that we can't find a stride is still disconcerting. It is obviously not an attainable goal, given that the effects of your brain damage keep you constantly dealing with a loud, wired, uncomfortable body. Strange to have to learn to live with a clamoring body that upstages almost anything and everything. In all this time it has never found a comfort zone. There is none. Who would have ever anticipated that the most disruptive aspect of this post-encephalitis stage is a screaming body.
One would have predicted that you would be dulled by all this and if anything, unresponsive. Instead, you hardly have a moment's peace. Quiet, down time with relaxation and comfort is rare and fleeting. Coupled with disconnection and disorientation that comes and goes at will, it is rare that peace and security are yours for any prolonged time.
I guess that leads me to ponder our relationship with time. To keep on keeping on, we must be able to handle the long haul, day after day, month after month, year after year.
Yet we must also deal with abrupt changes from attentive conversation to disconnected wanderings. Time is then broken into fragments. Continuity is not availlable. Snatched moments and quick changes run into each other.
Friends from the past intertwine with new friends even as they never meet and represent disjointed experiences. Memories are snatches from the distant past. Recent history erases itself as it occurs, leaving you lonely and alone much of the time. Our relationship to time is schizophrenic and yet as time continues to pass, we keep on keeping on.
It would seem that this constancy would bring relief, and on one hand it does. We can be depended on over the long haul. Yet, that is a strange relief. Not warm or nurturing, really.More factual and reassuring. Perhaps the greatest toll in all this is its harshness. Unrelenting demands of a loud body create a sharp environment with few rounded edges. Only our own attitude can actually soften the reality. Only our own willingness to care and attend as we keep on keeping on softens and soothes.
Rounded edges, soft tones, soothing gestures are all of our making. Luckily we continue to try to respond to the harsh reality with as much loving care as we can muster, because that's the only way we are able to "keep on keeping on" without falling into the abyss of harshness and despair. In the end, hope emerges because we have the right attitude, we care, we really care.