blind insight

Pro choice.

I have debated long and hard about whether or not to respond to the comments by Rob and Allison to my previous post. As some of you probably know, there is a divide among deaf and hard-of-hearing people about whether cochlear implants are an exciting innovation that can provide substantial benefit to those who obtain them, or are instead a greedy marketing ploy by evil drug companies who seek to inflict a "horrible, invasive" procedure on Deaf people who should not be forced into hearing.

As you can probably tell, I fall into the former category. Truth be told, I don’t fully understand the latter, because I’ve never lived as a Deaf person and have derived enormous satisfaction and pleasure from sound all my life.

I was first diagnosed with a hearing loss around the age of 6, and started wearing hearing aids at 9. I was already "oral" when my hearing started to deteriorate, and have remained so throughout my life. I don’t sign, and because of my tiny field of vision, it is very difficult for me to follow hand gestures. I read lips, but not nearly as well as other deaf people I know (the small "d" in the word there is deliberate, by the way, as is the "D" in the previous paragraph). I talk on the phone, I listen to music, I go to movies, and while I miss a lot in all those settings, I love being able to hear what I can in each of them. To hear more, and better, would be amazing!

Furthermore, as I mentioned in my previous post (and as you surely know, if you've been reading along here for a while), I’m going blind. Right now, I can’t hear much of anything in my right ear other than indeterminate environmental sound. With my current level of binaural hearing, it would be exceedingly difficult for me to hear and understand many of the auditory cues on which blind people rely in elevators, on street corners, and when using public transportation, just for example. If a cochlear implant can significantly improve my functional hearing, this may someday be the critical factor in my continued ability to live and function independently, as my vision deteriorates and I necessarily become more dependent on my hearing for communication and navigation.

Rob and Allison, I respect your personal decision not to choose CI surgery. But please don’t demonize this procedure, which in fact has a relatively low risk profile and a high rate of success for people in circumstances similar to mine. It is not the least bit helpful for you to attack me for choosing to hear -- something I have done all my life and enjoy greatly -- or for desiring to hear better. Your suggestion that I just want to hear in order to "fit in" is simply insulting, to me as well as to others who have chosen CI surgery to serve their own goals and needs.

Nor does it facilitate my decision-making process for you to warn me of the horrible, invasive nature of the surgery. My doctor and audiologist are presenting me with broad information, and my family and I are asking plenty of questions. Of course I’ve "done my research," as you question, and I’ve gotten quite a bit of feedback, both positive and negative, from other CI users. If, after the evaluation process is completed, I determine that the surgery is safe for me, and that the implant offers me a strong likelihood of improved hearing, then I will proceed, knowing full well the consequences of my decision.

Lindsay Wagner, eat your heart out.

Yesterday afternoon, Steve and I schlepped down to the suburban wilds of Aurora. We met with a lovely audiologist who answered our endless questions, tested my hearing (result: I can't hear for shit), and informed us that if I want, I can have a Bionic Ear. Otherwise known as a cochlear implant.

CIs have been around for a long time, but I had always thought they were for deaf people, people who couldn't benefit from hearing aids. A few years ago, my audiologist mentioned that doctors had started doing implants for people who do benefit from hearing aids, in appropriate circumstances. I looked through some materials, then set both the paper and the idea aside. I didn't see any real reason to go through surgery, and to have to learn a whole new way of hearing sound, when I was doing pretty well with the status quo.

In November, one of my close friends (hi Dawn!) received an implant. Her surgical recovery seemed to be fast and fairly easy, and she's hearing all kinds of new sounds. Our hearing situations are quite different - she's profoundly deaf and doesn't benefit from aids - but her rapid and exciting progress was enough to reignite my interest in the procedure.

We learned yesterday that CI candidates should have less than 60% speech discrimination success (with a hearing aid) in their "good" ear, which will not be implanted, and less than 50% in the bad ear. My left ear, the good one, put up an impressive 28% success rate, while my right ear posted a big fat zero. Interestingly enough, despite my right ear's utter failure to discern random sentences, I correctly heard 41% of them with both hearing aids on. According to the audiologist, this means that my right auditory nerve is being stimulated, giving me context, balance, and sound. And, apparently, this bodes well for my potential success with a CI.

The technology itself is fascinating (see that Bionic Ear link above). A thin device about the size of a quarter attached to a nickel is implanted inside your head, with little jiggly wire thingies extending down into the ear. The implant contains electrodes and a computer chip, which stimulate the auditory nerve (I think - Steve understands the science and engineering aspect of it much better than I do). Outside, you wear a speech processor (which looks much like my existing behind-the-ear hearing aids) connected by a thin cord to a little magnet. The magnet attaches to the implant on the other (in)side of your head and sends the electrical information to the processor. The processor can hold several different programs (e.g., for different situations with varying levels of background noise), each of which is individually mapped for the user's unique needs.

The post-surgery process of learning to hear with a CI is long and requires a substantial time and energy commitment to ensure success. The brain has to learn to hear a whole new way, and to recognize sounds it may never have processed before. But the audiologist thinks that if I put in the required time and effort, I have a very good chance of hearing much better in my right ear than I do now in the left, or with both aids. That's a pretty exciting prospect!

I would continue to wear the hearing aid in my left ear, and supposedly the brain is flexible enough to integrate the two different types of sound processing (my hearing aids are analog, the CI is essentially digital). Other than having to wear a helmet for helmet-worthy sports and not being able to have an MRI (CAT scan is fine), I would have no activity restrictions as a result of the surgery (no swimming or rock climbing for a week, she said, but I think I can handle that). I would also be able to entertain my friends by attaching kitchen magnets and other small metallic items to the side of my head.

I have to make another appointment for one more round of testing, and to meet with the surgeon. I also have some insurance uncertainties to resolve. Assuming neither of these steps produces an insurmountable obstacle, I think I'm going to go ahead with the surgery this spring.

I'm still in a bit of a daze about this decision. When I initially decided to visit the clinic for evaluation, I was very, very excited and couldn't wait to get things scheduled. As soon as I'd made the appointment, though, I was filled with anxiety, and by last week I was contemplating canceling it. Yesterday, when Steve picked me up at work, I was a huge ball of nerves. In the hospital parking lot, I nearly burst into tears, although I couldn't articulate precisely why I was so upset. Steve took me by the shoulders and reminded me that all I had to do was listen and learn, and that we wouldn't do a thing unless it felt right. I took a deep breath, and in we went.

Within a few minutes after meeting the audiologist, I knew I wanted to proceed (assuming I qualified). She put us both immediately at ease, answered our questions thoroughly, and helped me understand how much potential the CI offers for improved hearing. One of the most important considerations we discussed was my need for better hearing as my vision deteriorates. That, more than anything else, is motivating me to go forward with the surgery.

To love, honor, and pick up the glass shards.

When Steve married me, he signed on for a lifetime of picking up after me. Not that I'm a particularly messy person. To the contrary, I'm the one who usually declutters our house, and it's his closet that has the volcanic eruption of clothing spilling out of it. But I'm blind, and I move too fast, and our kitchen is tiny. So I break stuff, and spill things, and make impossible awful messes, a lot.

Saturday night, I sent a full glass of cranberry juice into a lethal red mess on the kitchen floor. I was reaching for a bottle of wine to deglaze my saucepan, and forgot I had put the glass on the counter. I was barefoot and afraid to move, because in our dim kitchen, all I could see were the bigger pieces of glass and the puddle of liquid. Steve came to the rescue.

A few weeks ago, I ruined our entire meal by colliding my hand into a pint glass sitting next to the sink. It sprayed shards all over the vegetables I was cutting and as far away as the pot of pasta boiling on the stove. Then, too, Steve took over, patiently combing the kitchen for every last speck of glass.

If the Green Bay Packers' 4-12 record this past season wasn't bad enough, I managed to shatter TWO of Steve's precious Packer memorabilia. I cracked one of his Packer glasses during my holiday cookiethon, and the only ornament I was clumsy enough to drop during the undecorating of our Christmas tree was, of course, a Packer orb. Steve swept up the mess with gritted teeth. I'm hoping he'll forgive me by next Christmas.

My mishaps extend beyond glass. Tonight, I knocked a full bag of flour out of the freezer (don't ask me why we keep flour in the freezer - that's Steve's habit). It landed neatly on its head on the floor, making the cleanup less than awful (and Steve managed to salvage most of the flour, too). I also crash into the corners of our tables and display pieces constantly, upending picture frames and sending tchotchkes to the floor.

I try to be careful. I try to remind myself when I've set a glass down somewhere, and to keep my hands up in my field of vision when I'm moving things around. I try to look first, then act, but I get caught up in what I'm doing. I relax into my bustling culinary routine, and I forget the hazards that are quick hands and dim eyes.

Poor Steve. I think he knew what he was getting into, but it won't surprise me if I come home someday to find the Riedel wine glasses replaced with these.

Memory Lane.

Now that my books are unboxed and shelved, the house feels more like home. I am a (slowly) recovering packrat in general, and particularly with respect to books. I knew I had a lot of books, but until now, I don’t think I’d quite acknowledged the extent of my hoarding habit. I had a few things dating back to high school, and virtually my entire college and law-school courseloads, all packed into boxes that have traveled with me cross-country and even over the Atlantic, lo these many years.

Taking them out, dusting them off, trying to decide whether to keep or eliminate them, I was flooded with memories. I filled almost a full shelf with French plays, representing a year-long course in which I found a life-long friend and cultivated a great love for Molière. I’d like to read these again, because they’re wonderful reads and because my French could use a brush-up. I'm also keeping all the human rights and geography books, because they and the classes for which I bought them played a significant role in my decision to go to law school (at the time, I intended to become an international environmental and/or human rights lawyer). Many of my beloved anthropology books are staying, too. They played a huge part in my then-budding travel obsession and helped me go out into the world with an open-minded and culturally sensitive approach.

On the other hand, I'm getting rid of more than half of my international economics and politics books, mostly because the international order has moved so far away from what it was in the early 1990s. I've shelved, and hope to reread, some of those, however. Like Looking Backward, and The Rise and Fall of the Great Powers.

I found (and am not keeping) a grammar book from the Russian class I took from a German professor in France. I didn’t learn a shred of Russian in that class - and forgot most of the two-years' worth I'd already learned - because the professor always spoke French with a German accent. Still, I met some of my closest French friends in that ridiculous class.

My law books still had the silly tape-flag tabs I plastered them with before exams, a system that was useful only for forcing me to work my way back through the casebooks and to triple-check my outlines. I'll keep them, for now. A lighter memento of my law school years was the complete Tales of the City series, by Armistead Maupin, and a big book of P.D. Wodehouse stories. Early in my first year, I mentioned to the professor who would become my mentor and research supervisor that I sorely missed having time for non-law reading. He suggested short stories, which turned out to be the perfect solution.

My favorite box was the one crammed full of stuff from my childhood bedroom, which I must have packed up in the mid-90s when my father took over my room as his home office (he left the James Dean poster on the ceiling and still has my blue-flowered wallpaper). In addition to my degree from the University of Strasbourg and my National Merit Scholar certificate, I found a Certificate of Award from Foothill Elementary School, honoring me as the Best Creative Writer in 1980. If I recall correctly, this award was based on a poem for which I also won a citywide writing award, and which my mother probably has tucked away in my baby book!

In the same box were several mounted photographs I’d taken as a high school sophomore. I loved my photography class and was convinced that I had Vision. Alas, I was a bit daunted by the workings of my father’s manual SLR camera and never quite launched my brilliant career as a photojournalist. I like these photos, though. They are black-and-white and a little bit artsy, and I think I’ll frame them and hang them in my office at home.

In addition to my own photos, there’s one my friend Lys (from whom I drifted away when she turned into a Marley-obsessed pothead) took of me. I don’t remember whether this was pre-mohawk or just after I’d regrown my hair, but it definitely reflects my early punker days. I believe the focus of the photo was my hearing aid, because that fit into whatever assignment Lys was completing. Somewhere in my parents’ house, I think I have another version that my friend used for her pastel-on-photo assignment. The colors she added were pretty consistent with what was actually in my hair at the time!

Last but not least were my high school yearbooks. My senior picture shows me in a modest blue button-down shirt, with neat chin-length hair and a nice big smile. Junior year is forgettable. But in the 1986 Odaroloc, there I am in all my mohawked glory. My class picture was pre-mohawk, but my outfit of paisley blouse under a peach Forenza v-neck sweater, enormous earrings, rhinestone neck brooch, and an armful of black rubber O-ring bracelets looks like something Mollie Ringwald might have worn in Pretty in Pink. In the front section of the book, though, is the million-dollar photo. Me, on Halloween, dressed in black, and having a lovely spider web painted on the shaved side of my head by an Art Club student. That night I was a vampire, wearing this fantastic long black cape that my (extremely cool) mommy made me for the occasion.

I fully intended to share these photos with you, but I can’t seem to make the scanner work right now. If Steve can get it all hooked up, I’ll update with pictures, promise.

Home Improvement

When we moved into our house last fall, Steve and I were quite delighted with the wealth of storage space it offered. We have lots of rooms, lots of closets, a basement, and a garage. Alas, what we don’t have - and what we hadn’t really focused on not-having when we picked the place - is bookshelves. Thus, for the past fifteen months, much of the aforementioned basement has been filled with 20 some-odd boxes of books.

Even before we moved, Steve promised to build me bookshelves. We picked out the ideal spot for our little library, in a hallway leading to the door on our "garden level." Then, for a while, we got distracted by wedding planning. Next, Steve realized that he didn’t have the proper tools to make "nice" shelves, something fancier than a few simple boards nailed together. So we registered at Home Depot. Friends and family came through with virtually all the desired tools, plus a great many gift cards for Steve to use for wood and other supplies.

But by that time, the front part of the basement bedroom was chock-full with furniture we were hoping to sell or donate (we’d acquired a dining room set dirt-cheap through a friend, and inherited beautiful bedroom stuff from my beloved grandmother), and with wedding presents and shower gifts we’d agreed not to use until we were legally wed. And so, the book boxes collected dust in the back of the room.

After we returned from our honeymoon, Steve outfitted his workshop with all of his cool new tools. Eventually, we filled our kitchen and dining room with beautiful new things, recycled mountains of boxes and packing material, and donated our old kitchen and the superfluous furniture to victims of Hurricane Katrina and refugees from Sudan. Suddenly, we could see - and reach - the boxes of books again. So Steve trooped off to Home Depot and discovered that making the kind of shelves he envisioned out of solid oak, maple, or cherry would cost roughly the GDP of Andorra.

Discouraged, he built me a wonderful pot rack, freeing precious cabinet space in our tiny kitchen and giving our lovely new pots a place of honor. After that quick success, flush with the pleasure of using his schmancy new router, he returned to Home Depot to explore alternative, more affordable shelving concepts. He came home with a gimongous stack of materials - wood-veneer particle board, real wood for routed edges, some sort of backing, and assorted other gadgets and pieces.

For the past couple of months, strange noises and smells have emanated from the basement (beyond the usual, ubiquitous husbandly noises and smells, that is). Whenever he’s had time, often working well into the wee hours, Steve has been sawing, routing, planing, and sanding the massive pile of woodstuffs. This weekend, he finally had time to stain and seal the various pieces. Around 10:00 on Sunday night, he began putting it all together.

I came downstairs at 10:30 or so, and found him cussing and stomping around, having the kind of explosion he typically reserves exclusively for Packers’ games (speaking of which, GO BRONCOS!). Home Depot had cut the backing wrong, his carefully designed shelving components weren’t fitting perfectly into his beautifully routed slots, and he was fuming about the whole project being a washout. I offered calmly to help, Steve calmed down and switched into structural-engineer-genius mode, and soon I was squeezing the uprights together with every ounce of strength in my hyperextended shoulders, closing my eyes and trying to ignore the power drill running perilously close to my right ear. I imagine we will look back on this as a beautiful example of the trust we enjoy in our marriage.

At some point, my presence became superfluous, so I scampered off to bed while Steve continued to wrestle with the bookshelves. Many hours later, he finally crawled into bed himself. When I awoke, I immediately ran downstairs. There, lining the walls in our little garden-level entry, were the most beautiful bookshelves imaginable!

Last night, we liberated our many many books from their boxed-up confines, giving them a semblance of organization, eliminating duplicates, and even (horrors!) deciding to sell or donate quite a few. I hadn’t realized it, but many of the book boxes had traveled with me for over a decade, from city to city and house to house, essentially unopened. In my next post, I’ll share with you some of the journey down memory lane their unpacking provided me. In fact, if I can reconnect our scanner, I might even post a photo of my mohawk, circa 1985.

Not Innocent.

Thanks to Dawn for passing on to me the news that the new DNA testing shows only a minuscule chance that someone other than Roger Coleman committed the crime for which he was executed. As one of the investigators is quoted as saying, the news feels like a kick to the gut. I'm still processing my reaction to this revelation, and would welcome comments about yours.

ABC: read AEDPA.

A few weeks ago, while watching my secret addiction, Gray's Anatomy (as opposed to my well-known addiction, Law & Order), I started seeing ads for the latest Kyle MacLachlan vehicle, InJustice. The trailers suggested an intriguing and relevant-to-me premise, a lawyer drama about wrongful convictions. I set the DVR to record the series, and eagerly awaited the pilot episodes.

Two shows into the season, I'm ready to write the whole thing off. Poor writing, marginal acting, and ridiculously improbable plot lines are usually more than enough to doom a television program to my blacklist (which is why about 75% of what I watch is Law & Order or L&O SVU, and another 15% is sports). Still, I feel compelled to keep watching. Because, in principle at least, this show is about my work.

The premise is fairly straightforward: Kyle MacLachlan is David Swain, a rich corporate lawyer with political yearnings who has funded the National Justice Project. While he dozes through meetings, billing $600 per hour, his team of gorgeous young lawyers and investigators runs around proving the innocence of convicted men and women while flirting and bickering with one another.

Setting aside the exceptional attractiveness of Swain's posse, the NJP bears some resemblance to the Innocence Project in which I participate. We receive dozens of inquiries, we screen them, we discuss them, and where we have serious concerns that the inmate may be factually innocent, we try to do something about it by getting lawyers and investigators on the case.

But what the InJustice writers either don't know or have chosen to ignore is that proving someone's innocence many years after he or she has been convicted is extraordinarily difficult. And even when that innocence can be proven, there is no guarantee that the courts or the government will accept that proof or grant the individual relief. The barriers to justice are particularly formidable in cases like the two the show has treated so far, which involve eyewitness testimony, police misconduct, or ineffective assistance of counsel, rather than physical evidence that may be subjected to new testing technologies.

The show certainly is engaging, and at times heartwrenching. But its treatment of the grave issue of wrongful convictions is grossly oversimplified. For example, in last week's episode, the National Justice Project takes a case, "files a habeas" (according to Swain), and almost immediately manages to obtain a hearing on the prisoner's innocence, despite the fact that the conviction is more than a decade old. Having accomplished that extraordinary feat - the stringent evidentiary hearing restrictions of the federal habeas statutes apparently having no bearing on them - the team has 9 days to prove the inmate's innocence. How do they do this? By adhering to their cardinal rule about public defenders: "Do the opposite."

Of course, the public defender was lazy and sloppy, the eyewitnesses revise their testimony, and it is only a matter of days before the NJP folks have uncovered a high-level law-enforcement conspiracy that led to the wrongful conviction. While we do not see the hearing, it appears that all of this new evidence is presented to and accepted by the court. And the very next day, the innocent man walks out the prison gates into the arms of his family.

I recognize that the concepts such as exhaustion, procedural default, the statute of limitations, and successive petition restrictions do not make for sexy television. I recognize also that this show has the potential to raise public awareness of the reality of wrongful convictions, at a time when support for the death penalty seems to be waning considerably. Still, the inaccuracy and oversimplification this show is presenting does an InJustice to those of us who, for real, seek to remedy and invalidate wrongful convictions.

An Innocent Man? (Redux)

This story from the morning's news sent chills down my spine. I posted some thoughts about Roger Coleman's case last year, and rereading them today rekindled the anger this case always stirs for me.

Will new DNA technology prove Coleman's innocence? Will it instead prove all of us wrong, who have long proclaimed that innocence, and show us up as bleeding-heart chumps for touting Coleman's case as a horrifying example of the death penalty's evils and the criminal justice system's failings? Or will it only build another layer of ambiguity onto the decades-old pile of confusion about who killed Wanda McCoy? And while proof of his innocence cannot save Coleman, who was executed in 1992, will it benefit others who seek to prove their wrongful convictions through advanced DNA-testing technology, and will it further undermine Americans' reportedly waning support for capital punishment?

I am waiting eagerly and anxiously for the results.

Signs?

Steve and I left the house at the same time this morning, and walked together the first part of the way to our respective bus stops. When we walked outside, we each took a double-take. The morning light was eerily matte and sepia-toned, so that we seemed to have stepped from our little SoBo house into a Sergio Leone western.

Just after we went our separate ways, a spectacular rainbow nearly smacked me in the face. It was wide and clear and bright, its ROYGBIV array impossibly vivid. As I stared at this amazing rainbow, I realized I could see its entire span. There it stood, a perfect arc of brilliant color stretching over Broadway, with one pot of gold hidden on the NCAR Mesa and the other in Martin Park. Continuing on my way, I noticed a second, more muted and pastel spectrum shining in the sky alongside the brighter bow.

The wind whipped my curls into a frenzy, my sunglasses shielded my eyes against the glaring January sunshine, and a light but steady rain dappled my head and shoulders. I couldn’t help grinning at Mother Nature’s early-morning antics, which felt like a happy omen gracing the new year.

(At least until I got to the office, and spilled my entire cup of coffee on the floor.)

6 hours left, mostly safe.

Like my blogger buddy Sherry, 2006 dawned for me with a sore throat and a head full of yuckiness. No hangover, this, unfortunately.

Last night's party was a success, methinks. After some initial schmoozing, we rallied the troops around the coffee table and spent the rest of the night playing party games. Trivial Pursuit was a study in generational differences. We played the original edition, issued in the early '80s; not surprisingly, my parents smoked the competition. Taboo, played women against men, was a more evenly matched contest. The men eventually won, but only after I somehow I got bumped onto their team.

When midnight chimed on the grandfather clock that Steve's grandfather built, we toasted the New Year with champagne and sparkling cider. No one seemed disappointed not to be at a more raging bash, and at least from my perspective, it looked like everyone left smiling (and mostly sober).

It was only after the house cleared out that I realized it was illness, not vino, crashing around in my temples and tickling my throat. With Nyquil's assistance, I was eventually able to put 2005 to rest.

I hate having yet another cold/flu/sore throat thing this season. But if this is the One Bad Thing that New Year's Day 2006 intends to inflict upon me, I can take it.