Turning back to the "blind" part of my blog title, I had one of those frustratingly typical "Madeline moments" on the way home last night. Hopped off the bus at my usual spot, only to find myself smack in front of an unfamiliar sign/structure of indeterminate proportions. I was confused, tired, and struggling to get my bearings in the dark. I turned right, and found my way blocked by the bus stop bench, then turned back left and figured I could step between the poles of the sign. Alas, this graceful move brought my head smack into a solid mass that I'd failed to notice was attached to the poles at precisely the level of my forehead (and thus just out of my field of vision, particularly in the dark).
The little crash was painful, but as I swore and rubbed my forehead the whole way home (having found my way safely onto the sidewalk at last), I wondered whether I was most upset about the incident itself, because a cute guy who gets off at my stop sometimes witnessed my klutziness, or because I was having trouble navigating in such familiar territory. Finally I decided that I was mostly just embarrassed, and pissed at the bus driver for not opening the doors in a safer spot.
But this stupid accident also dredged up some intense feelings of frustration and sadness about losing my sight that I tend to keep pretty far from my emotional surface, but have been experiencing more than usual of late. Last week, in my women's group, we discussed challenges each of us is facing in our lives and what we like about the way we're handling those challenges. When it was my turn, I meant to start out by saying that I wasn't going to talk about the omnipresent challenge of living with Usher Syndrome, but suddenly found myself choked up and unable to continue. A few tissues later, I managed to collect myself, and did end up talking about the vision loss a bit, particularly how it seems to have become more of a factor in many different aspects of my life. I talked a little, too, about how surprised I was at the swell of emotion that bubbled up simply at a joking mention of my disabilities. Perhaps, as I said to the group, this is because I've learned to live my life with a positive attitude by suppressing much of the stronger, more painful feelings about slowly going blind. I guess it doesn't take much to bring those emotions surging to the surface. Certain triggers I'm well aware of -- near-misses with bike messengers and small children have a tendency to bring me to the verge of tears -- but I crack wise about my "blind chick" ways so easily that I hadn't expected the act of joking that I wasn't going to talk about the issue to set me off.
Last night's incident also got me thinking about how I identify myself. While my self description would include a long list of adjectives beyond those related to my disabilities, I've realized that I identify myself more as a person with a hearing impairment than as a visually impaired person. My hearing loss is something I've lived with in a tangible way since I was a little girl; perhaps because my loss has been stable for so long, it has become simply a fact of my daily life and an integral part of who I am. Though the vision loss is much scarier and more frustrating, I've never felt much kinship with the blind community. Obviously, I'm not really blind (yet?), but I've been legally blind (due to a field of vision of less than 15 degrees) since I was in law school and can't really see all that much any more, relatively speaking. I wonder sometimes if my emotional response when allowing myself to focus on my vision loss stems in part from my inability to relate to blind people, whereas I'm quite comfortable identifying myself as hard-of-hearing and have a wonderful circle of deaf and hard-of-hearing friends.
Maybe all of this means I should allow myself to feel the sadness, fear, frustration, and uncertainty of my vision loss more often, or more completely. Perhaps I need to grieve now for my eyes, even though I am lucky enough to have a fair amount of central vision left, and while exciting research allows me to hope for treatments and cures in the foreseeable (pun intended) future. I've always avoided this type of "dwelling" on my disabilities, and try to move through life with a happy outlook and to make the most of every day (and the vision I still have). But if my tears are so quick to flow at so little provocation, I think I need to look a little deeper inside, and make sure I'm not hiding some important stuff from myself.
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