I find that I spend a great deal of my time in mindless activity. I have become addicted to online word and puzzle games–the ones I can play on my own for free. On any given day I seem to accomplish very little and the hours go by. Our life seems strangely normal–I go off to my studio–supposedly to work but more often than not I spend at least half the time playing Solitaire on the computer. Every day I am at the grocery store seemingly incapable of planning ahead for any meal. I meet friends for coffee a couple of days a week and a couple more hours go by. After supper L and I settle in to watch television ending with the Daily Show at ten at which time I go off to bed to read and he watches a bit of the Colbert Report and does some stretching exercises before settling in for the night with his breathing machine on the couch in the family room. The next day we get up and start again. When I try to consider why I seem incapable of accomplishing the basics it occurs to me that I begin and end each day in a state of waiting–will there be a change tomorrow? Where will things be a month from now? Three months from now? A year from now? And the most troubling question of all: if I can’t manage to get normal tasks done with any degree of organization now, how will I be after L is gone and I am alone?
We’ve switched to daylight saving time so at 5 am it is still dark but I woke up around 3 when I heard L’s breathing all the way from two rooms away and got up to check on him and be sure that the tubing for his oxygen wasn’t tangled or pinched. He was sleeping and the tubing was fine and I went back to bed but not to sleep. I lay there thinking about what lies ahead–the silence that will come once he’s gone and so is the constant hum of the oxygen compressor/condenser–whatever they call the thing that has become the background soundtrack of our lives. These days I liken our situation to that of sitting at a RR crossing–the gate is down, the warning lights are flashing, the warning bells are dinging and we can see the train–but it just sits there and so do we. We know that eventually it has to come but we can’t say when and in the meantime this waiting has become our routine. I was thinking back 2-3 years as I lay awake last night–remembering the almost imperceptible process of L’s decline. There was the time when I took over all the yard work–mowing the grass, shoveling the snow, raking the leaves, trimming the bushes–things he once did with me or for me. I thought then that this was a small price to pay for giving him more time (and energy reserves) to do the things he enjoyed–biking and walking with friends, fishing, going to basketball games and plays and art shows and movies and parks. It never occurred to me in those earlier days that eventually that slow process of letting go of all those things would lead us to this. But although our life has fallen into a routine now that I understand will become even more restricted as the days and weeks go by I am content. We are together with incredible support of a network of caring others and we talk and laugh together as we did when things were “normal” (whatever that is).
Yes, every day we get is like a gift–a feast of life to be savored–and I hope that train just keeps sitting there.
Most days are good.
L is still here–frail of body but healthy in mind and spirit–and that makes life easier.
Still as a person never good at living in the moment I will admit that there are days when I struggle against the bonds that currently hold my future prisoner. And the result of that is that I battle guilt and anger at myself and my selfish need to whine about “my life” when what L is facing is “no life.” The domino that falls after that is my lack of patience with anyone who isn’t dealing with a situation that I see as horrid as mine and L’s is bemoaning his or her lot in life. And the domino after that is my ingrained reaction to shut myself away from others–to crawl into my shell and feed on my own self-pity.
For several days now I have been very close to that need to shut myself away. But then today I went out to pick up some branches that had fallen over the winter and I saw the buds of spring’s flowers just beginning to risk breaking through the soil and I understood that in time I too will find my way–and now I can go on.