I see the world through a different lens, a lens with a short focal length, the near term in sharp edged detail, the immediate in brilliant clarity. The further out I go, the blurrier it gets. You might say this is normal, that all of us see the world this way. The only difference for me is that further out is not all that far, that the distant future lies within the next year or so.
These changes, these events that have overtaken me, have caused me to ponder more on the daily aspects of living, on the things I do in the moment. I don't worry so much about the longer term effects of my decision. I don't worry so much about what might happen next year, or the year after. I spend more time looking at the next 90 days; that is my time horizon.
There are people out there who tell me I focus too much on the fact that I am terminally ill. After all, they say, everyone is going to die. I wonder, when one of my thirty-something friends says something like that, if they are distinguishing between the practical reality of near term demise or the long term theoretical end to a life well lived.
Other changes drive my focal point as well, changes in my body. Last night I had a dream. In the dream I was standing up, walking. Then, right in my dream, I appeared to myself in some sort of quasi-waking way and said "Don't be silly. You should be in a wheelchair." I think I am finally adjusting to the loss of my legs. What comes next I don't know. I just know that it takes time for the mind to adjust to the body's changing reality.
So the subconscious within me rebels at the loss of ability and the idea of imminent death. My daily life cannot be lived this way; it would be far too overwhelming. My mind still sees me as hale and hearty and strong and living. Inside my thoughts, I cannot escape the patterns that would be here, my body not in a battle with ALS. My mental focus has astigmatized, the refraction of my life before ALS blurring the view of my life today.
It is an odd thing, my mind working one way and my body working another, the two in constant conflict, struggling with my mental image versus reality. I have to keep checking to be sure I pay attention to the right one.
My dream is that you don;t get any worse kind of like Syephen Hawkins who seems to have managed to stop the progress. If there are errore in this it is because I can barely see the screen.]love you my dearest.
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Unfortunately, Stephen Hawking actually is getting worse - a few years (8ish I think?) he lost the ability to control a subtle movement in his pinky (or was it eye?), and they had to design a special system for him that used a muscle in his cheek that is one of his few muscles he still has control over. Part of the reason he seems to have stopped declining is that most of his motor neurons are already dead now.
ReplyDeleteALS sounds like a terrible disease from what I've heard I am very glad that the ice bucket challenge happened because it seems to have done so much to raise awareness about it and hopefully some day to find a cure. Best of luck to you and Richard.
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