We were on vacation for the last half of June: Lake Champlain. For the first week, before the rain came in, my parents' house was filled with light by 5:30 a.m. The house is on the east shore of the island, and sunrise is the day's event. My theory is that the lake is so big, the water reflects the light back into the atmosphere and the world is twice as bright. Robert would be awake with the sun, but would be happy lying in bed and dozing until I told him I was willing to really get up at, say, 7:30.
Those mornings, getting up briefly at dawn to look through the big windows facing the lake, I would think: 'shook foil.' It took me a couple of days to remember from which poet the phrase originates--Gerard Manley Hopkins--and I had to review the anthology pieces to remember which one, "God's Grandeur":
The world is charged with the grandeur of God.
It will flame out, like shining from shook foil . . .
The lake, a giant basin, a huge container ("the shapes a bright container can contain!"--Roethke), a reservoir of instability, flickering surface light in moving facets, and beneath--'all dark, all spreading, unfathomably deep' (Woolf), 'and now and again, we rise to the surface, and that is what you see us by.'
The lake, another metaphor for Robert's brain.
The surface ever shifting, bright one day and dull as tin another. And, beneath, the giant sturgeon and perch alive, perhaps a bit blind from the dark of the depths, yet swimming their own course beneath and between strata of cold and warm and silt and clear.
We have been giving him the fabled mitochondrial cocktail, aptly named as it is meant to jitter that weird primitive resident of the cell's nucleus, the mitochondria, jitter it/them into a state of more highly animated energy production.
The prescribed dose was 5 ml t.i.d., or 3 times a day. This made him spastic and occasionally rigid. And still, sometimes immobile--at least in terms of his extremities.
For reasons I do not fully appreciate, I still have a wooden model I made of a human cell in which the parts are painted and on pegs that pull out from a board, also painted with the outline of a single cell. It is very colorful, although I do not know if the colors I chose are merely representative of the differentiation among parts of the cell, or are the colors one might find if one looked at a cell under a microscope. Undoubtedly, the colors are representative of my imaginative speculation on the subject. The nucleus is red, and the mitochondria, if I am certain I remember where they reside, are pink and black dots.
I feel certain I made this for an AP biology class, but I have a memory of the model not scoring particularly well, perhaps because I was more engaged by my artistic representation of the cell and not of the particulars of human biology. I find that memory entirely plausible as it fits in with how I would rather see facts as subject to the influence of imagination.
Perhaps I hold onto this, or, rather, it makes its way into my belongings as I move, because I have some odd and undeserved affection for its dubious artistic merits.
Which is the entire problem of observing Robert when he is given a new medication.
While it's difficult to take a really good picture of Robert, he is, in my opinion, exquisitely beautiful--or he can be. It just depends upon how the fractals of his muscles are working across the planes of his face on any given day.
What are we looking for when we give Robert a new medication? Reduction of, or balance to spasticity and rigidity. Increased function of some sort, no matter how small. His happiness level. Cognitive clarity.
But in my own hubris, I look for that balance in his face most often. I want to see the child I knew come through again--the child, the baby, with normal facial tone, before his basal ganglia started deteriorating and the muscles in his face were affected. The child who was so beautiful as an infant that people would stop me and tell me so.
Perhaps this is all related to what Williams says about the worlds of experience and existence. And when we leap the bounds of experience and enter the world of existence, then, and only then, are we living in the realm of art.