blind insight

Assorted.

Apologies for the continuing blog neglect. The past month or so has brought new resonance to the term "crazy busy." Start with three weekends in a row consumed by an unexpected trip to Wisconsin, an expected trip to New York, and houseguests. Throw in many hours of actual lawyer-type work, mostly in preparation for an oral argument I'm presenting tomorrow, and the day-to-day baby wrangling activities, plus a dash of sleep deprivation and colds all around, and you have yourself a recipe for chaos, or at least no time to blog.

But, chaos aside, things are going beautifully around here. Milo is growing and changing at an astounding pace, and daily amazes us with new expressions, sounds, and skills. (See his blog for more on this front.) I'm enjoying full-time mommying much more than I thought I would, too. Perhaps it's because I know this time is fleeting and temporary, but my days with Milo have become far more enjoyable and fun than boring and hard, and I can tell already that I'm going to miss him immeasurably when I return to work full-time on December 3.

On the other hand, I've really liked keeping my lawyer brain turned partially on during my leave, and I am very excited to argue tomorrow. With the help of both grandmas and Milo's newfound ability to ACTUALLY NAP! DURING THE DAY! I managed to get pretty well prepped. In fact, Milo proved to be a willing and supportive assistant in the process. He didn't ask the most probing questions, but he listened patiently while I practiced my argument over and over again. Perhaps his first sentence will be "May it please the Court."

The other day, a reporter who is also a friend-of-a-friend came by to chat with me. I have a feeling that I'm not quite news-worthy enough to serve her purposes, although it was lovely to meet her. We talked primarily about the intersection between my disabilities and my parenting. As I wrote a few weeks ago, my fears on this front have not materialized, at least at this stage of Milo's life. I feel pretty comfortable moving through the world with Milo, particularly when I'm wearing, rather than pushing him, and the cochlear implant has virtually eliminated the hearing loss as a factor in most parenting situations.

But what I hadn't focused on, until this conversation, was how much having Milo has intensified my fear of becoming completely blind. I've written much in this space over the years about that fear, which lurks always under the surface of my thoughts. When the reporter asked me why having Milo makes me even more afraid of going blind, I started to cry, thinking about how heartbreaking it will would be to miss seeing - truly seeing - him grow up. And then she started to cry, too, and then we laughed at ourselves, and sort of moved on from that painful moment. It does terrify me, though, and I'm not sure how to handle that fear, other than to memorize his face and his smile and his perfect little body, to soak up the memories of everything I see him doing now, and to continue to hope that some kind of cure/treatment/prosthetic device is on the horizon for my eyes.

VisionWalk 2007 - the belated recap

The second annual VisionWalk played out almost exactly like the first one. Gorgeous sunny day - check. Small but enthusiastic crowd of walkers - check. Cohen/Freiburger clan plus a couple of friends, including an adorable toddler - check (with the lovely addition of two adorable babies and a ceramic pig). Walking around in 1K circles until we got bored - check. Usher's Mushers running walking away with the Flying Pig award - great big, $17,000+ CHECK.

While the event itself doesn't carry the inspirational wallop of, say, the Race for the Cure, it is inspiring to see so many blind and visually impaired people, and their supporters, getting out and having a good time walking for a good cause. Even more inspiring is the overwhelming response from our support network - the money we raised came from nearly 200 separate contributors! As word-smithy as I fancy myself, I'm at a loss to describe adequately how much this widespread generosity means to me. I guess I will just sum it up with a simple, but hearty THANK YOU!

Here are a few images of the event:

The 2007 Usher's Mushers - back row, L-R: Bill, Mad, S-J, Steve, Milo (hiding under the blanket on his daddy's chest; front row, L-R: Monica, Natalie, Lucy, and Linda

Amelia Eyeheart, our Flying Pig, rolling along in the Snap & Go:

Milo, doing the 5-week-old's version of a charity walk:

Assorted non-walking diversions, including a surprisingly talented band of opthalmologists and a surprisingly entertaining Wall of Velcro at which the older kids flung themselves willingly:

VisionWalk 2007 - The Challenge Begins!

Once again, Steve, my parents, and I (together with Crusher, of course, who by then will have shed his or her hardnosed utero name for something more baby-appropriate) will be doing the VisionWalk pledge walk for the Foundation Fighting Blindness (FFB).  The FFB is an extraordinary tax-exempt organization that raises millions of dollars each year to fund research at leading universities, hospitals and other facilities around the world to find the causes and possible cures for many retinal diseases, including macular degeneration, Stargardt's disease, and the one that particularly grabs our attention, Retinitis Pigmentosa (RP).

If you've been reading along here, you probably know that I have Usher Syndrome, the particular form of RP that causes not only vision loss but also hearing loss (talk about a double whammy!). I've chronichled the dramatic improvement to my hearing as a result of my cochlear implant surgery last year, but my vision continues its slow but inexorable deterioration. I haven't written about it much lately, because there's not much to say right now other than "It sucks. It gets worse. Wish they'd find a treatment already."  I am still fortunate to lead a full and active life, but RP/Usher do have a massive - and increasingly challenging - impact on my life, and the lives of millions of others. We want to eliminate, or at least ameliorate, that impact for me and for everyone else suffering from retinal degenerative diseases.

Which brings me to my pitch:  I would very very much appreciate your help in this fight.  The second annual Colorado Visionwalk will take place on Saturday, September 29, 2007. Our team, Usher's Mushers, will be striving to surpass our astounding results from the inaugural 2006 event for which the generosity of our friends and family (including many blindinsight.com readers) helped us to raise over $11,000 and take home the "Flying Pig" award for the top-grossing team.  This year, we have set an ambitious team goal of $15,000, but we think that, with your help, we can reach this mark and help ensure that the FFB's sight-saving research continues to produce hope - and results - for me and for millions of others. 

You can contribute to our efforts by visiting http://www.fightblindness.org/site/TR?pg=personal&fr_id=1410&px=1079010. Your contribution of any size will make a tangible difference in furthering the FFB's crucial mission.

If you are local, we would also love to have you join our team, help the Usher's Mushers reach its fundraising goal, and walk with us on September 29. If you click the link above, you will find more information about how to sign up (let me know if you have any problems doing so). This will be Crusher's first foray into social activism, and we're very excited to show him or her how fun and satisfying it can be.

Thank you for your continued support. (And I promise a "real" blog post soon. If I get enough requests, I'll even post photos of The Belly, now 31 weeks and grooooooowing).

One year later.

The one-year anniversary of my cochlear implant surgery slipped by, almost unnoticed. But a couple of days later, when I realized it had passed, I felt a rush of emotion as I thought about just how dramatically the implant has improved my hearing, and with it, my quality of life. (Of course, at 27 weeks pregnant, it doesn't take much for me to feel a rush of emotion, but whatever.)

Earlier this month, I attended a full week of arguments and presentations at the Tenth Circuit. Because we were on vacation the preceding week, I had forgotten to make arrangements for the court to set up the amplification system. And because the arguments I wanted to hear were in several different courtrooms, sometimes on the same day, it would have been difficult, if not impossible, for the court staff to provide me with amplification for everything, anyway. So I decided to "fly solo," and to see just how much I could hear without any assistance beyond my CI and my hearing aid.

I heard everything, or almost. Even sitting a few rows back in the spectator gallery, I was able to hear and understand most of the judges' questions, and most of the attorneys' responses. There was a mumbler here and there who was difficult for me to follow, but for the most part, I heard and understood and followed along. I can't quite articulate how incredible it felt to know that I can now walk into the courtroom on a moment's notice to support a colleague or hear a particular argument. Rush of emotion, anyone?

I've also been doing prenatal yoga for the past couple of months. You may recall the last time I took an organized yoga class. That experience was so frustrating and demoralizing that for the past year or so, I've been doing yoga on my own, with videotaped instruction. But now, having finally figured out how to keep my CI from flopping around when I do inversions, and with my pregnant hips crying out for some serious stretching, I decided to venture back into the studio.

To my delight, I'm loving it. I can hear virtually everything the instructor says, even when she moves around the room, even when I'm in a position from which I can't see her or any of my classmates, and even during shavasana. For the first time in my life, I understand why it is actually relaxing to just lie there at the end of yoga practice, because I am no longer anxiously trying to figure out what the instructor is saying or listening for a cue that it's time to open my eyes and sit up again.

These are just two recent examples of how the CI has made my life easier, and opened new doors for me. In an unrelated context, Steve and I were talking today about health insurance, and recalling how much we had to pay out-of-pocket for the surgery. A year ago, this seemed like a great deal of money to shell out for something with such unknown benefits. Today, Steve called it the best $X,000 we could have possibly spent.

I'm pretty pleased with our new windows, which cost a bit more than that, but overall, I have to agree with him.

Reassurance.

My recent post detailing my fears about parenting with vision loss brought a great many readers out of lurkdom. I received many e-mails and comments from people with blindness who are happily and successfully parenting, from people better connected to disability resources than I am, from women dealing with similar vision loss issues who are not yet, but hope to be, moms, and from sighted parents offering tips and encouragement.

Thank you all so, so much. By the time I finished reading everything you sent me or linked me to, I was having trouble remembering why I was so freaked about this issue.

That reading, and considerable further obsessing musing on the subject of "parenting blindly" (as one correspondent so aptly put it), led me to a few conclusions. First, parenting is scary, and every parent has his or her own set of demons to confront and obstacles to overcome. Second, I've been adapting to the realities of my vision loss for decades, now, and have managed to make all sorts of different situations work just fine for me. There's no reason to think the same won't be true of parenthood, or that trial-and-error, creativity, and flexibility won't lead us to a successful system. And third, I'm not in this alone. I have a wonderful, supportive partner who not only has perfect hearing and vision, but also manages to stay much, much calmer than I do in all situations not involving Wisconsin sports teams. I also have my amazing parents just across town, ready, willing, and able to provide all sorts of much-needed assistance. In short, I'm feeling optimistic, and lucky.

I also anticipate that there will be some scary moments along the way, not just of the usual new-parent variety, but specifically associated with my vision and/or my hearing. I'm trying to make peace with them in advance, so that they don't undermine my confidence in my own parenting abilities at the most vulnerable (that is, uncertain and sleep-deprived) moments. I'll try to chronicle them here, for personal posterity and in case they might give comfort to some other visually impaired mom or dad down the road.

For now, Crusher continues to thrive. I'm still experiencing the Bizarro Pregnancy, in which my second trimester has brought continual nausea and fatigue, after an easy-peasy first tri. However, I'm still having a fairly easy time of it, and my doctor has diagnosed mild anemia that may be the source of the unpleasantness. We saw the critter again on Friday, jiving around and taking great big gulps of amniotic fluid.

Here are a couple of admittedly hard-to-see photos. I think the kid has my chin, but can't tell yet whether it has my (long, thin, crossed) toes.

My own *@%# fault.

I got to Kansas City on a Friday Sunday, for an appellate argument on Monday morning. The circuit staff, as usual, was totally on top of my accommodation needs, and had the FM amplification system all rigged up for me. We tested it, it worked, end of story.

Except that when the judges came out of the robing room and called my case, first on the docket, I realized that I had no amplification. I asked the presiding judge for a moment to figure out the problem, and he moved the microphones closer to the judges. At first, I thought this solved the problem. In fact, I could hear the judges, though not nearly as well as amplified-usual. Not wanting to delay the proceedings further, I began my argument.

What followed was not even close to my best performance, and may well have been my worst. Straining to hear always makes me tense and awkward, and my answers seemed rambly and unfocused to me, not sharp and directly responsive, which Is what I strive for. The judges were very kind about repeating themselves when I requested, and seemed to be smiling at me throughout the argument. Still, I sat down feeling awful about my presentation, and wishing I could call a mulligan.

As soon as my opponent began arguing, I realized the problem - somehow, I'd dislodged the headset ever-so-slightly from the receiver. I clicked them together tightly, and voila! I could hear. Kicking myself inside for the error, I at least was able to hear all of my opposing counsel's points, and to enjoy the mincemeat the judges of made of them. And during my brief rebuttal, I was able to give direct and focused answers to the judges' final few questions.

I learned two lessons from this stressful experience: One, always double-check the equipment; and two, I'm hearing dramatically better un-amplified than I ever could have imagined. Pre-cochlear implant, I would never have been able to hear even a fraction of what I did on Monday without FM or infrared amplification. The very fact that I wasn't sure, for much of the argument, whether the system was working, but not quite right, or wasn't on at all, was a testament to the CI's success.

On that note, I'm thrilled to report that at yesterday's 9-month appointment, I scored 100% on the sentence recognition tests both in quiet and with background noise. My biggest gain over the last few months has been in louder background-noise situations - in my last round of testing, I got 49% of the sentences right when the speaker's voice was only 5 decibels louder than the background noise, and yesterday, I got 76% correct. That's a significant improvement, and a spectacular result, according to my audiologist.

What's keeping me awake at night.

Progress in my uterus continues apace, as I remain exceedingly grateful for this relatively uneventful and comfortable pregnancy. Above the neck, however, things are anything but tranquil.

I've been spending a lot of time wondering how in the world we're going to make this work. I'm sure we can figure out the child-care situation and the work-family balance thing, although it will mean fewer impulsive gear purchases, exotic vacations, and nice restaurant dinners for a while. I'm also sure - or at least reasonably confident - that we will find ways to maintain our beloved athletic pursuits, spend time with our kid-less friends, and even relax on the couch from time to time. Perhaps I'm delusional, but this part of adapting to Life With Baby doesn't worry me so much.

But trying to figure out how we're going to manage all of this with only one parent who drives? And wondering how I'm going to avoid hurting my kid due to my vision loss (given how frequently I injure myself, however inconsequentially)? That has me scared shitless.

My hearing isn't troubling me. The CI has brought me almost to a normal level of hearing, and between that and the ready availability of lighted and vibrating alert systems, I don't expect my hearing loss to pose much of a hurdle in parenting. True, I can't understand much of what your average toddler says, but can anyone?

My vision, though? Hoo-boy. We're investigating nanny versus day-care options, and trying to weigh the dollar differences against the reality that only one of us will be able to do pick-ups and drop-offs in most circumstances. Not to mention transportation to doctor's appointments, play-dates, and kiddie activities. The bus system in Boulder is great, but it only goes so far, and I'm not entirely sure it's safe to take a newborn in a baby-bucket on the bus (anyone know?). Cabs will provide another option from time to time, but are available in these parts only on a slow, inconvenient, and expensive call-in basis (and, again, we have the safety issue).

And we haven't even begun to explore how we can protect the baby from any harm that might come to it because its mother walks into and trips over stuff a lot. I have no idea how I'm going to handle a stroller in crowded conditions, or how I'm going to walk home safely with the baby after dark, particularly given that I can only make it from the bike path to my front door by walking part-way in the street and doing my damndest not to trip over the branches, garbage cans, and other obstacles that frequently mar the sidewalk on our block. And how will I handle night-time feedings without having to turn on the lights to safely handle the baby, thereby waking the poor thing and probably destroying Steve's and my chances of getting a bit of sleep ourselves?

Part of me is sure we'll figure all of this out, through trial and (hopefully not too damaging) error. Part of me thinks I'm making too much of my disability's impact on parenting. But another part of me is filled with fear and uncertainty.

I guess I need to investigate resources for new parents with disabilities. I do hope that someone out there has not only dealt with the issues that worry me, but has memorialized their experiences and solutions in print or in cyberspace.

W(tf?!)

Chicago was lovely, thank you. It is such an engaging and interesting city, full of good food, neat neighborhoods, and unbridled Bears Fever. Alas, I returned to piles and chaos at work and am only just surfacing.

What was not so lovely, however, was the W Lakeshore Hotel. I've stayed at Ws a few times in the past, and have enjoyed them very much. Plush room decor, comfy beds, and lovely spa products in the bathrooms make for a delightful stay. This particular link in the chain promised lake views, a fully equipped exercise room, and superlative attention to detail.

Apparently, though, the details to which the W attended did not extend to such niceties as ensuring that guests might be able to see and hear and navigate during their stays at the hotel. I should pause here to state, for the record, that the staff was uniformly wonderful, and not one of my many complaints involved an interpersonal exchange. Nevertheless, the professional and courteous staff could do little to overcome the logistical hurdles the W has thrown in their - and our - paths.

I knew something was wrong the moment I arrived, when I couldn't figure out how to get from the cab to the lobby. The doors were set at an odd angle, in a wall of glass, and it was only after nearly walking into a pane or two that I found the ones that opened.

I passed through a second set of doors into . . . darkness. And Very Loud Music. I looked around for my colleague, who had proceeded to the elevators before he realized that I was lost in the dark and afraid to move. He backtracked to rescue me, and guided me to the elevator. Where we discovered . . . darkness. And Even Louder Music.

Upon disembarking from the elevator, we found ourselves in more darkness. A hallway, to be precise, illuminated only by dim, red lights mounted along the walls. Somehow, we found our meeting room, and stumbled into the blessed light. I did not make much of a first impression on my fellow faculty members, I'm afraid, given that I was blinking and shaking and doing my level best to reorient myself.

Eventually, I had to return to Satan's Hotel Lobby to check myself in. I mentioned to the receptionist that the loudness and darkness were rather extreme, and made it very challenging to navigate for a person with visual and hearing disabilities, such as myself. She was kind and apologetic. Whatever.

I found my way back into the Discovator, which took me to my red-lit floor. I felt my way along the hall to my room, fumbled with my key, and entered. More fumbling led me to a light switch, which provided barely enough useful light for me to move into the main portion of the room. The furnishings were quite nice, in typical W fashion, and the bathroom did, indeed, offer some lovely lemon-sage spa products. What the room lacked, however, was light. A condition exacerbated by the fact that three of the scant available fixtures had burnt-out bulbs.

I found the phone, and dialed the front desk. Nothing happened. I tried the room service line. Nothing. I listened again, and realized I had no dial tone. So there I was, stuck in a dark room, with a non-functional phone, and a tummy crying out for dinner (it was after 9:00 p.m., by the way).

Taking a deep breath and girding my loins for a challenge, I made my way back into the hall. It took me three tries to find the elevators, and then two elevators passed before I could figure out which one was open and descending. When I managed to get myself in the elevator, I was again bombarded by techno music. Not what my mood dictated, I assure you.

Back at the front desk, the ever-courteous clerk was hospitable and apologetic. She promised to have lights and phone fixed immediately, and placed my room service order for me. She also paid for my dinner, which I didn't realize until it came (upon which discovery, I promptly regretted ordering only the paltry cheese plate).

The next morning, I discovered that the light over the shower didn't work. I also realized that the light over the bathroom mirror worked, but created so much glare that I could barely see myself. Hoping for the best, makeup-wise, I stepped out into the hallway, which apparently remained dark and red-lit at all hours, to ensure that guests didn't miss the disco effect. (Later that day, the hotel staff fixed my shower light. It promptly died again, and required another fix. That one worked, just in time for me to check out. The promised additional room lighting never arrived.)

The elevators made no allowance for sleepiness. Even at 7:00 in the morning, they greeted me with an ear-splitting techno beat and lighting so dim that guests regularly bumped into one another as they entered what appeared to be an empty compartment.

The "upside" of these auditory and visual annoyances was that it irked everyone. At first, I felt like an uptight loser, who couldn't enjoy a hotel with a bit of a punk-rock attitude. It only took me a day to realize that none of the other guests were feeling it, either, and complaining about the hotel occupied quite a bit of our break time during the conference. Somehow, knowing that it wasn't just me, with my lousy eyes and ears, made it all easier to bear.

In addition to the lighting issues and the incessant music, we had to contend with meeting rooms that were either freezing cold or sauna hot, excessive charges for just about everything, and really crummy coffee. The fully equipped exercise room was nicely outfitted, but so dimly lit that I was afraid to move, for fear of tripping over a bench or machine.

But, again, the staff was delightful. Perhaps they stay chipper due to the sheer entertainment value of watching people flail around in their infernal hotel.

Another day older and. . .

Well, not exactly deeper in debt. Deeper in goodies, though, particularly a long-awaited little slice of musical wonderfulness! By the time my birthday rolled around, I'd been whining about the iPod for so long that Steve probably got it for me simply to earn some peace and quiet. But from the moment we learned, while selecting my CI device, that I could connect the processor directly to an iPod, I wanted one.

Back in the early '80s, when mobile music became ubiquitous, I had a Walkman. I used it a couple of times, but could hear at all only with my hearing aid switched to telecoil and cranked its loudest, which left the music nearly overpowered by a persistent buzzing. Later, I tried a portable CD player, with the same results. Plus, I couldn't use earbuds (because, um, my hearing aids were in there), and the regular headsets had to be perched on my microphones to allow me to hear - an awkward, and incredibly dorky-looking proposition.

So the personal portable musical device,  it just wasn't happening. Which meant that after I stopped driving, about 10 years ago, I also stopped regularly listening to music in any kind of purposeful way. I had a CD player in my kitchen for a while, and would play some tunes while I cooked or baked, but that was it.

I come from a family of music lovers. I've always been the odd woman out, with my toneless voice, inability to understand the words of the songs, and lack of opportunity for focused listening. But I, too, love music, and have long regretted my inability to listen more often, and hear better.

So when the audiologist showed me the special cord that links the CI to a personal audio device, I immediately started pushing for an iPod. After all, I told Steve, if I had to undergo surgery, recovery, and months of learning how to hear again, I should at least get some music out of it. I was sort of hoping it might appear in the form of an anniversary gift, but the extra months' wait only added to my enthusiasm when I finally unwrapped it.

My brother installed a few songs on it, I plugged in my special gizmo, and (after I figured out how to turn up the volume), it worked! Not only could I hear the music, I could understand the words. The sound quality was excellent, and the music sounded surprisingly "right" to me, since I keep hearing that CIs don't process music well. Because the music is going directly into the CI, there's no interference from environmental sound, yet with the special program my audiologist installed last week, I'm still able to hear external sound as well as the iPod. It's incredible.

Steve and I worked into the wee hours last night sorting our music collection and debating which discs were worthy of occupying the Nano's 8 gigs of memory. Hopefully, it won't take us too long to complete the process of moving all that music. We've acquired a car adaptor, too, ensuring an impressive soundtrack for our Christmas roadtrip to Wisconsin.

Normal (nearly).

My six-month testing appointment confirmed what I've known for a while now: I'm hearing GREAT.

I got all the sentences right in quiet (except for the one I spaced out on halfway through). I got a whopping 97% correct with background noise, and I even understood 50% of the sentences in which the speaker's voice was only 5 decibels louder than the background noise. This is, apparently, right around "normal." And considering that I understood exactly 0% of sentences with my right ear, pre-implant, it's pretty incredible.

I'm hearing so much, so well. I'm constantly amazed at how much more and better I'm able to hear and understand. Movies, television, the radio, my friends and family, judges, colleagues, and more. For the first time, I've discovered that people everywhere are having fascinating conversations about really personal stuff, oblivious to the people around them (like me!) who can hear it all. I've also learned that people have really annoying, loud conversations on their cell phones on the bus, in cafes, and on the streets. I had no idea there was so much free entertainment being offered!

Every once in a while, I find myself in a situation in which no sensitivity-setting reduction or other adjustment improves my ability to hear and understand. A recent happy hour fell into this category, as did a recent court function. The downside of expecting to hear so much better, even in background noise situations, is that when I can't, I'm even more frustrated and disappointed than I was before the surgery. I hope these circumstances remain few and far between, and that as I continue to progress, they will become ever rarer.

At Thursday's appointment, my audiologist gave me a program for the Ipod I'm hoping will be among my birthday gifts (hint hint). Listening to music regularly will be a fairly new experience for me, and a new test of the CI's capabilities. I expect to have more to say on this subject soon.