He's looking pretty good right now. He developed a cold while in Vermont, and has been recovering from that. His arm motion continues to be quite good, and today, he was sitting next to me on the couch and pushing on my shoulder with the flat of his hand, which is quite a feat. When he smiles right now, he's getting two creases at the corner of his lips, not just one as before.
I guess I feel that if we can get a diagnosis for him, we can start to make plans as a family--make decisions about where we could live or what we could do, not just feel as though we have to stay here because we've set up shop here. Right now, so much seems limited. It could be me limiting myself, I suppose, out of insecurity, but there are real barriers to us doing much: accessible housing, the right doctors to help us, good health insurance, affordable childcare, schools that will accommodate him.
If we know what we're dealing with and what we can or cannot do to make things better, we can actually feel out the invisible boundaries of this place we're in. At first, when you find yourself in this country, you don't want to know where the boundaries are. It's hard for some people to understand this, understand why I'd be comfortable for so long without a good diagnosis. But everything is so dire at first, everything in medicine initially seems so absolute, that you don't want to have boundaries set or limitations defined. First, it's frightening, and, second, you sense the possibility that these barriers that are put in your path are not necessarily as immutable as others would have you believe.
Often, it's other people that need to define you, need to categorize you, in order to see their relationship to you more clearly. But that's not necessarily what you need. Illness or disability seems to strip people of the right to live for themselves and to define themselves. You're constantly dealing with the boundaries other people set for you: benchmarks, labels, limits, impossibilities. If you resist these, you get the feeling that others think you're being naive or unrealistic. But that's often because they need to keep you as a fixed and defined point: you are sick, disabled, different--they are healthy, able-bodied, capable. Your difference and need serves to make them feel vaguely superior or entitled or lucky or charitable or generous. What you are is the hole they fill.