blind insight

The light at the end of the tunnel vision?

No real sense of when any of it will mean anything to me and my lousy degenerate retinas, but BOY DOES THIS STUFF GIVE ME HOPE!

What are you laughing at?

I've said before that my true mission in life is to entertain the masses. I mean, even when I'm writing about crappy depressing stuff like death and going blind and people rotting away in prison despite gross violations of their constitutional rights and shit, I really just want to make the whole world laugh.

So I think I should be pleased -- flattered, even -- to have brought so much joy to those I passed on my way to work today. Apparently, there is something deeply entertaining about the sight of a young (please!) woman dressed in a sunny-bright sweater set over a jaunty pair of capri pants and with freshly-painted toenails peeking out from a pair of not-too-strappy-for-work sandals going about the business of her morning commute. From the bus stop to the Sixteenth Street Mall to the Starbucks, and even to the very door of my very office, the laughter, the jokes, and the wise-cracks echoed in my wake.

What is so freakin' funny about my cute little Springtime ensemble, anyway? It's almost April, after all, and one of those glorious, no-clouds, mid-70s days that Colorado does oh-so-well.

Maybe it was the snowshoes?

Thought processes.

I'm finally heading home in a few minutes, after a long day spent banging away at the brief of the moment. The good news is that I'm finally (finally!) reaching that essential place in which I can think of nothing else, where I begin to eat, breath, and dream the words and concepts I'm attempting to convey to the court. The bad news is that there's no brain space or bodily function left over for brilliant blog ideas.

But the weather is gorgeous again, so I'm looking forward to a long, thought-condensing run tomorrow morning. Dating back to my college days, I've done some of my best "writing" while cruising along in my Nikes (back then they were Asics, but that's another story). In fact, I attribute the two papers I published during law school to the fact that I was training for a marathon while writing both of them.

I'm not quite sure what it is, but something about running, more than any of my other active pursuits, allows my mind to gel around whatever writing project I have pending. If I'm lucky, I can even remember the brilliant sentences I've crafted in my head when I'm sitting before my computer some hours later. I've thought about toting along a little notebook , but sweat just makes the ink run, and with my condition, I really need to keep my eyes on the road. . . .

Teach your children well.

I will be happy to see the tail end of March, as this month has brought one death after another within the six degrees of separation that delineate my world. Just in the past ten days, the grim reaper has claimed my father's cousin (leukemia), a colleague's brother (tragic accident), a friend's mother (MS), and my grandfather's sister (age, a broken hip, and assorted other ailments). Enough already.

Although my great aunt was old and her death expected, perhaps even merciful, her absence raises a serious question: What will her son do now? Or, more accurately, what will her son do after his father (who must be close to 90 years old now) also dies? Because my great aunt's son (my mother's cousin, and my first cousin once removed) has Usher Syndrome.

In fact, he's the only other relative whom we know has Usher. Through a research study in which my family participated, the gene that causes Usher in Ashkenazi Jewish families has been identified, and we know it must come from both parents to produce a child with the disease. But we know of no forbear on my father's side who landed this lucky genetic prize, and only this cousin, G., on my mother's.

I hardly know G., but from the time I was diagnosed with Usher over 20 years ago, he's served as a gut check for me -- sort of an anti-lodestar -- whenever I've slipped into self-pity. G. is older than my parents, perhaps in his mid-60s, but still lives in his parents' apartment. To my knowledge, he doesn't work, and I don't even know whether he went to college. At family events he keeps to himself or clings to his parents' side, and he appears to have no ability to function in a social setting.

My mother thinks his hearing is better than mine, though his vision may be worse. But whether he can see or hear more or less than I, he is far more disabled. G. was brought up to be handicapped. Perhaps his parents needed him to depend upon them, in that clinging, desperate way that parents of only children sometimes do. Maybe they were too afraid of what evils the world might inflict upon a young man with clouded vision and muffled hearing. G., after all, grew up before technology opened myriad new doors for people with all sorts of impairments. Or maybe the fear was his, and his parents were unwilling or unable to push him out of the nest so he could learn to fly on his own.

The family grapevine suggests that G.'s parents have made some "arrangement" for his care after his father's death, whenever that may be. I suppose he will live the remainder of his days in some type of institutional or group home. There's a part of me that hopes these new surroundings will force (or at least encourage) him to discover his abilities and to achieve some semblance of an independent life, though I have no reason to believe he desires such an existence.

But whenever I think about G., I feel an incredible rush of gratitude towards my parents, who raised me to know that neither hearing impairment nor vision loss could prevent me from making my own way in the world. I wonder, sometimes, who and what and how and where I would be, had I not hit the jackpot in the parental lottery. While I might not have wound up with the same genetic hand, I would surely have been dealt some kind of bupkes, as we all are. But with another set of parents, I might have grown up to see my limitations as brick walls in my path, instead of rickety hurdles that I can leap over with a little training and perseverance (or at least knock down trying).

Can you see the cabbages?*

Steve and I saw The Fog of War yesterday. It's a fascinating and somewhat disturbing series of interviews with Robert McNamara, interspersed with Oval Office tapes, newsreels, and other clips from the Kennedy and Johnson presidencies. While many aspects of the movie moved and surprised me, I found most interesting McNamara's unresolved ambivalence about Vietnam. He seems to believe that we were right to send troops to Vietnam during the Kennedy years, and that American forces were engaged in a "Cold War action" to prevent Southeast Asia from falling entirely to the Communists. But at the same time, he unequivocally blames Johnson for the disaster that the war became, and he makes no bones about his view that things would have ended differently in Vietnam (at least for America) had Kennedy not been shot.

More than anything, though, this movie got me thinking about the folly of the notion that any individual is capable of leading a whole country, and of making fair and wise and right decisions in times of international conflict or crisis. What kind of mad arrogance must someone own to believe he (or she) is capable of handling the awesome responsibility of heading a nation? Can -- or should -- we trust any individual who fancies himself qualified to be President? For that matter, what should we seek in our leaders, beyond the ambition and ego that any presidential pretender must possess? We speak of intelligence, integrity, and a host of other qualities we purport to demand of our presidents, but what should we really be looking for in the man (or woman) to whom we entrust the keys to the kingdom and the codes to the world's end?

The media has stripped any illusion we might once have entertained about our leaders' infallibility. We are spared no foible or indiscretion, however private or long-ago. But are the newsmongers giving us what we really need to evaluate our candidates? I count myself among those who would vote for just about anyone (except, perhaps, Al Sharpton) cloaked in the Democratic mantle and running against Bush fils. Yet I wonder what questions we should ask of Kerry, Dubya, and anyone else with designs on the Oval Office, to better gauge their ability to lead us. We claim to know their views on health care, jobs, reproductive freedom, the separation of church and state, and the death penalty -- all issues on which I cast my votes. But how can we know whether Kerry (or Bush) can salvage the debacle of Iraq, install there a stable and democratic government, and stop the steady flow of Old Glory-draped caskets from Basra and Baghdad? How can we know how our next President will react to the next terror attack that strikes the heart and soul of America? Can any of the programs and plans and platforms and predictions ensure that his response will be considered and just?

Obviously, I haven't a clue. So I'll close my eyes and vote, and hope that President Kerry proves himself worthy of my blind faith.
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* "Nobody has ever expected me to be president. In my poor, lean lank face nobody has ever seen that any cabbages were sprouting." Abraham Lincoln

Stinkin' thinkin'

This typepad gizmo is loads of fun, but boy, is it a giant oozing time-sucker! I think I've finally got everything where and how I want it, at least for now!
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In response to some of my recent writings about vision loss, a friend made an important observation (and one I've tried unsuccessfully to ignore myself). She framed it in her own words, but what it boils down to is that I'm terribly afraid that my disabilities jeopardize my chances for love and marriage. This fear has nothing to do with Steve (or any actual relationship in my admittedly checkered past). If anything, Steve has offered me a safety zone in which I can let down the Ms. Overachiever facade and admit that I'm sad, scared, and insecure about losing my vision.

Still, this fear lives deep inside me, where it gnaws at my gut and taunts me in a wheezy voice, intoning such niceties as "why would anyone want to marry a blind girl?" "who would possibly want to put your genes in his babies?" and "you're damaged goods, kiddo." No matter that my rational self sees through its huge and hoary exterior to the sniveling and pathetic core, the fear still chews up my confidence and goads me to inflict all sorts of tests on my poor unsuspecting boyfriend.

There are the obvious ones: As we walk through the dark restaurant, does he take my hand to prevent me from crashing into tables, chairs, and tray-toting waiters? In the crowded party, is he willing to repeat his own and others' conversations patiently until I understand, and to run interference to spare me embarrasment? Does he willingly navigate the logistics of dating a non-driver and accept unflinchingly the burden of schlepping me from place to place? And can he laugh with me -- never at me -- at the often amusing results of my failures to see or hear?

But I also engage in more subtle (and often subconscious) tests. While the outward form of these interrogations varies, they invariably ask: Can he handle the uncertainty of whether and when and to what extent my vision will continue to vanish? Will he stand by me as I reconcile my grief and fear at losing what's left of it? Does he have the ingenuity and desire to help me pursue my passions and develop new coping mechanisms? And above all, why in the world is he with me, when there are zillions of eligible, clear-eyed, sharp-eared women out there?

As I said, the rational part of me knows this is a load of hooey, and that I'm actually a totally kick-ass girlfriend (after all, I love sports and action movies, I can make the jeans-to-little-black-dress transition in fifteen minutes flat, and I'm relatively unfazed by farts, burps, and questionable housekeeping skills). Nevertheless, when I'm struggling with my own feelings about the slow fade going on behind my eyes, having the added worry of "will my boyfriend leave me if he knows I'm really just a scared little wuss and can't handle this blindness thing for sh*t" rear its nasty little head doesn't help.

Here I am!

I've finally made the leap from the Blogger kiddie pond into the deep end of the great big TypePad pool. So far, so good. Will be spending a bit of time re-dating and re-categorizing my imported posts, so hopefully this will look familiar enough, soon.

Welcome to my new digs. Perhaps a blog-warming party is in order?

Keep on the sunny side.

Per my (second) favorite song on the O Brother Where Art Thou disc, I'm filled with newfound resolve to keep on the sunny side of life. Here, then, is my list of the

Top Ten Reasons Why Usher Syndrome Can Be Fun!

10) Sleeping without hearing aids eliminates effects of bed partner's terrible snoring.

9) Enhanced olfactory experience created by sensory over-compensation offers endless entertainment of the "what's that smell?" variety.

8) Liberal guilt is assuaged because pan handlers and sleeping homeless people are outside field of vision.

7) Loss of peripheral vision ensures ability to ignore people to whom you'd rather not speak -- just walk on by and they'll never know if you saw them.

6) Lip-reading reliance coupled with extreme tunnel vision saves many a friend from an embarrassing teeth/lettuce incident.

5) When hearing aids screech with feedback during heavy makeout session, can alleviate awkwardness by informing co-participant, "oh, that's just my parents checking up on me."

4) Loss of night vision provides ready excuse to hold hands while walking with cute new guy.

3) Lenses implanted during cataract surgery reflect light, fascinating babies and drunk guys in bars.

2) Hearing loss plus lack of night vision provide ready excuse to ignore pick-up lines from drunk guys in bars.

And the Number One Reason Why Usher Syndrome Can Be Fun . . . . (drum roll, please):

1) Repeated bruising on hips and shins from walking into furniture dramatically raises pain threshold, making Brazilian bikini wax feel like a gentle massage.

I see!!

Early this morning, I laced up my running shoes and stepped out into a cool and earth-smelling morning for a little constitutional. A block down Emerson, I realized I'd forgotten to swap my "good" hearing aids for the latex-covered crappy set I wear for sweaty pursuits. Given the present state of my budget, I'm desperately trying to eke another year out of the current "good" set (I characterize them quotationally because they suck battery acid for breakfast and go AWOL in the slightest bit of background noise). So after another block spent smacking myself theoretically upside the head, I decided I couldn't risk sweating all over the "good" aids. Fortunately, I was wearing shorts with a secure pocket, so I pulled the aids off mid-stride, wrapped them in a handy-dandy kleenex, and pocketed them for the duration of my run.

As previously reported, I've been struggling with my vision in recent days, so I was a tad nervous about the prospect of running aid-less. While I hear pretty well with the aids, I'm almost totally deaf without them, and can hear only very loud noises such as the sound of an anvil hitting the pavement after being dropped from a 50-story building or the sound of a nuclear bomb exploding nearby.

But after a few uneasy minutes, I began to relax. Soon, I began to feel almost liberated, and to revel in the solitude of running in silence. Freed from the noise of passing cars, the wind whistling through my microphones, and even my own breathing, I felt almost disembodied, and began to experience my surroundings with unprecedented clarity. At one point, the smell of just-born cherry blossoms nearly knocked me over with its heady power, and I slowed to look around at the pink and white flowers that seem to have appeared overnight all over the neighborhood.

And by eliminating my hearing from the equation, I became far more aware than usual of seeing.

I can see. I can see houses and trees and streets and people and dogs and grass and flowers and cars and buildings and dirt and bugs and garbage and benches and signs and fences and gardens and colors and potholes and sidewalks.

I think it's time for me to stop whining now.

Collision course, the sequel.

I had a most excellent weekend in Crested Butte. The weather was perfect, the snow was slushy enough to overcome its sparseness, the house was beautiful, and the company was great. All in all, it was a blast. Except for the part where this guy from Texas and I collided in the middle of the ski run.

I've been wrestling with myself for the past couple of days, trying to decide whether to blog about this or not. I've finally stopped crying whenever I think about it, and I'd like to keep it that way. Plus, I had this horrible thought that the Texan in question might go googling around for information about me and decide to use these thoughts for his own litigious purposes. But this is my space in which to vent and process, so here it is.

The collision itself was neither high-speed nor particularly damaging to either party. As best I remember, I was skiing in a pretty straight line downhill. I remember thinking to myself, "damn, girl, you're finally getting the hang of this telemark thing." One of my friends was waiting by an orange "SLOW" sign just ahead of me, and I was getting ready to stop next to him. I know there was no one in front of me, or in my immediate fall line, because I do recall looking around to make sure no one was coming my way (those signs are popular stopping points, so I'm always extra careful when approaching them). Then something hit me hard from the left side, and I went flying to my right and landed hard on my right hip. I lay stunned for an indeterminate stretch of time before I realized that I was basically okay and managed to sit up.

By that time, the ski patrollers had arrived and were busy checking both of us over for injuries and had started taking statements from my friends and the other guy's family. According to my friends, the guy's wife raced over screaming "I SAW THE WHOLE THING!! I SAW THE WHOLE THING!!" But she didn't seem to have any better sense of what had happened than the rest of us did, and once she realized her husband was pretty much fine, she calmed down.

After perhaps fifteen minutes, we were both able to ski away from the scene of the accident. I continued skiing (shakily) for a few more runs, but started feeling dizzy and nauseous and decided to go to the clinic to make sure I hadn't sustained a concussion. Fortunately, the nice medical staff determined that I had not suffered any serious injuries other than a crippled psyche. They treated me with ice, oxygen, and Advil and sent me home.

Physically, I really was okay. And while I don't remember much of what happened, judging from what my friends told me later and from the location of my assorted bumps and bruises, it probably was not my "fault." Apparently, the Texan was taking huge, wide turns, and my friends think he was paying attention to his daughter skiing below him rather than to his surroundings. But all day Saturday (and even now) I kept replaying the scene over and over in my mind. I couldn't shake the feeling of responsibility. More than that, I couldn't rid myself of the frightening thought that I may be endangering myself and others by continuing to ski. Giving up driving was terribly hard, but giving up skiing (or climbing, or cycling, or running) would mean foregoing one of my great pleasures in life, and one of the things that helps me feel free and independent even as my vision shrinks.

I woke up Sunday morning feeling a bit brighter about the whole thing, albeit rather sore. Screwing up my courage, I decided to spend the morning skiing, figuring I needed to get back on the horse before it kicked me again. I'm glad I did. I was pretty nervous at first. I tried to pick a line close to the trees wherever possible, and slowed to a near stop whenever we encountered congestion. But it was a glorious day, with a perfect Colorado sky, warm sunshine, and almost no crowds. In less than three hours of slope time, we got in at least ten runs, and I felt like my tele turns were finally coming easy. Most important, I realized that my coping mechanisms do work, that I can see what I need to for skiing, and that what happened on Saturday was just one of those things that happen sometimes on crowded ski runs. True, someone with "normal" eyes might well have seen the Texan coming. Then again, folks who can see tend to ski a lot faster and more aggressively in a crowd than I ever do.

I'm still upset about this incident, and have some residual feelings I need to process. But I'm not quite ready to hang up my skis.