blind insight

A new friend, a new inspiration.

My mom and I threw a party for everyone who contributed to our winning VisionWalk effort. I was skeptical when mom floated the idea, but it turned out to be terrific. People were so thrilled to be thanked in this personal and festive way, and it provided us with a great opportunity to get a broad cross-section of friends and acquaintances together. We intend to make this an annual tradition, and would love to entice some of our far-away supporters to join us next year.

In addition to our contributors, my mother also invited a couple of folks from the Foundation Fighting Blindness. One of the local volunteers brought along Michael Stone, whose blindness is caused by a related, but somewhat different retinal degenerative disease from my own. Michael just completed his sixth Ironman in Hawaii. He lives here in Boulder, and we discovered that we've done many of the same training events and races over the years. He's much faster and more competitive than I am, of course, but we still found it rather amazing that we'd never met before.

Talking to Michael was a first for me. I know other deaf people who do the same activities that I do, and we've shared tips and tricks and laughs over our unique needs and experiences. But never before have I talked about climbing, skiing, and triathlons with a fellow blind person.

Michael and I commiserated about the incredible challenge of sighting (and swimming in the right direction) in open water. He has some adaptive techniques he's mastered, which he promised to share with me. We talked about cycling - how to train alone, safely, and how to ride in races, safely, and how we can't go downhill fast (at least not safely). We talked about climbing, his first love, and a sport he gave up when he was diagnosed with his visual impairment. I encouraged him to climb again, with Steve and me and our friends, since he indicated that he'd stopped climbing in part because his partners weren't able to accommodate his changing needs and abilities.

As those of you who've been reading for a while know, I'm terrified about losing more of my vision. Michael, I think, sees somewhat less than I do, at least as far as his central vision is concerned. And yet, he's doing the things I want to be doing (and at a much higher level than I am). He's living fully and independently and actively.  Meeting him has given me both hope and inspiration.

Plus, he's a great guy, and we're all looking forward to getting to know him better.

Five months: status report.

I've had little to say on the cochlear-implant front in recent weeks. Basically, it's great. I'm hearing so much, so clearly, and loving it. I can't think of a single complaint, other than wishing the processor was slightly smaller and didn't flop off my head during yoga.

I don't have a court appearance until next week, but I sat in on some Tenth Circuit arguments in September, and together with the FM system, the CI worked superbly. The sound was much crisper and cleaner than with my hearing aid. Also, I could hear all of the rabbi's stories, jokes, and sermons during High Holidays services, which made the experience far more interesting (and perhaps even more spiritually satisfying), and kept me awake throughout.

On the other hand, I'm finding that my left ear, with its low-tech hearing aid, less and less adequate for solo hearing. I've even taken to using the CI for the phone semi-regularly, although it works better with my home and cell phones than the one in my office. I don't think the left ear itself is performing worse, although I do want my audiologist to test it solo for comparative purposes, at my November appointment. Rather, I think the CI is just So. Much. Better. Now that my brain has almost completely adjusted to the device, I am hearing voices, music, environmental sounds, and background noises with more clarity and distinctness than I ever dreamed possible.

The other day, a panhandler muttered, "do you know what time it is?" as I walked past him. Pre-CI, I would have heard only a muffled voice, and would have either ignored him completely, or stopped to locate the speaker and asked him to repeat himself, before realizing the speaker wasn't someone with whom I wanted to engage. But now, I heard him perfectly, and rattled off the hour as I walked on by. It was a nothing moment, but I smiled as I continued walking, feeling proud to fit harmoniously into the background music of everyday urban life.

Pigs, flying.

VisionWalk 2006 was a roaring sucess. Thanks to the extraordinary generosity of our 160 supporters, the Usher's Mushers collected a grand total of $11,244 and walked our way to the Flying Pig award. The event as a whole raised nearly $100,000 - an impressive debut, and a LOT of much-needed research dollars.

The walk was . . . interesting. The organization was loose, at best, leaving an aura of chaos over the proceedings. The volunteers were super-nice and very enthusiastic, but didn't seem to have any actual information. And there was juice, but no coffee. I needed coffee.

Rather than a beginning-to-end 5K, as we'd expected we'd be walking, the route was a 1K loop that we were supposed to circle five times. It was a gorgeous kilometer, with trees and ponds and glorious fall foliage and stunning mountain views. It was also flat and smooth, easily navigable by wheelchairs, guide dogs, white canes, and strollers. But after two or three times around, it was boooooring. Also, we lost count. So we walked somewhere between 4K and 6K, give or take a couple of bathroom breaks.

There were something like 400 walkers, including quite a few blind people using canes or dogs. It was pretty cool to see so many blind people, although as usual it freaked me out to think that "real" blindness might be in my own foreseeable (hah!) future.

The event was also heavily family-oriented, with a Jumpy Castle and a giant inflatable slide and a cotton candy machine. There was also a terrific band, which we could hear playing from most points along the endless kilometer.

Eventually, people finished walking in circles and gathered by the bandstand for a disjointed awards presentation. My friend O., who had traveled all the way from Boston to join us, won the prize for the longest distance traveled to participate. Several teams won prizes for their excellent t-shirts (we'll come up with a design for next year). And we, the Usher's Mushers, won the team challenge by several thousand dollars.

Here we are with the sign proclaiming our accomplishment:

And here's our fabulous Flying Pig, Ms. Amelia Eyeheart:

Thank you all SO much! I hope you will support us again next year. (Well, actually, I hope that by next year, we don't need your support anymore because retinitis pigmentosa has been cured. A girl can dream.)

VisionWalk Update

I have been a negligent little blogger, for which I apologize. Hoping to have time soon for a meaty post or two, but between houseguests, holidays, and the bajillion pages of case record I'm trying to review and process, it'll probably be next week before I give you anything substantive.

But!! This Saturday is the inaugural Denver VisionWalk. Shattering our initial goal, my team has raised over $10,000 as of yesterday, and we are setting our sights on 11K. The response from our friends, family, and even internet strangers has been overwhelming. To say we are thrilled is a massive understatement.

Even as we collect these much-needed research dollars, the Foundation Fighting Blindness is announcing some very promising results. Last week, for example, the FFB announced results from a recent study in which transplanted stem cells showed a 100% rate of success in restoring some vision in rats with age-related macular degeneration. The next step for this research is testing in rats with other retinal diseases, including retinitis pigmentosa, which is what I have. Human trials are on the horizon (yet another reason to press for broader political support and protection for stem-cell research).

Of course, no update of this kind is complete without another request for money. If you would still like to contribute, just click here: http://www.visionwalk.org/site/TR?px=1079010&pg=personal&fr_id=1240.

Stay tuned for the walk recap - the Usher's Mushers are currently crushing the field for the Flying Pig award!

I forgot to tell you....

. . . that I took the CI to the movies on Saturday night. We saw the boundlessly charming Little Miss Sunshine, and I could hear EVERY WORD. Being able to hear and appreciate this hilarious, quirky, wonderfully written and acted movie made it all worthwhile.

Also, Steve was very impressed that I actually stayed awake for an entire movie. It's amazing how much longer my attention span is when I know what's happening!

A plea for help to save my sight.

On September 30, Steve, my parents, and I are participating in The Foundation Fighting Blindness' inaugural Visionwalk in Denver.

We're calling our team Usher's Mushers, because (as you probably know if you've been reading here) I suffer from Usher Syndrome. Usher is a particular form of retinitis pigmentosa (RP), characterized by moderate to profound hearing impairment, and progressive vision loss due to RP.

The FFB's mission is to drive the research that will provide preventions, treatments and cures for people affected by RP, macular degeneration, Usher syndrome, and the entire spectrum of retinal degenerative diseases.

For me, personally, the FFB's research gives me great hope that a cure or treatment will be available before I lose my sight completely.  As my vision worsens incrementally year by year, I know only too well how urgent the FFB's mission is for me and thousands of others.

I would very much appreciate your support for our walk.  We have set a team goal of $5,000.00. You can make a tax-deductible pledge online by clicking here.

Any amount you can give  - no matter how small (or large!) - will help the vital work of the FFB. With enough support from our family and friends, we may even win the "flying pig award," which will be given to the teams in the Family, Corporate, and Individual categories that raise the most money for this event. The award is so named because FFB will not wait until pigs fly to find a cure for blindness!

If you're local and would like to walk with us, we'd love to have you join our team! Please let me know if you'd like to become a fellow Musher; the sign-up information is provided on the website linked above. Thank you very, very much for your support!

UPDATE: As of the end of August, we've raised over $3300.00, including quite a bit of support from blog readers! We are leading the race for the flying pig award, and, more importantly, are raising a lot of sight-saving research dollars. Many, many thanks to all of you who have contributed so far.

An A.

The three-month results are in, and they are GOOD! I scored 94% in the sentence recognition test, 84% for sentences with background noise, and 68% on the rapid-fire, one-syllable words. All tests were conducted with both my CI and my hearing aid.

For comparison's sake, my one-month scores were 81%, 21%, and 20%, respectively, with just my CI, and 91%, 76%, and 44% with both ears.  So, some definite improvement. I am now testing in the normal-to-mild-loss range, which is very exciting.

We also tweaked the map, and things are sounding noticeably sharper now.  The CI/hearing aid sound blend is nearly complete, too. Barring any unforeseen problems, I won't see my audiologist again until mid-November.

It's almost mind-boggling to consider how significantly my hearing has improved in just three months. I can now say without the slightest reservation that getting this device was the right decision, and has improved my daily life.

PS: keep those battery-using ideas coming - they're great!

A contest!

My cochlear implant uses three batteries, compared to the single battery that powers my hearing aid. The CI burns through those batteries every two to three days, whereas the hearing aid goes at least a week between juice-ups.

Cochlear has released a rechargeable battery, but I am waiting until 2007 (when I will have more money available for pre-tax medical reimbursements) to purchase one. For now, I'm still popping batteries like breath mints.

A couple of months ago, Steve suggested that I save the dead batteries, rather than tossing them in the trash. He thought he might "do something" with them. What, he wasn't sure. As the weeks have passed, and the pile of batteries has grown, neither of us has come up with any brilliant ideas.

And so, I'm turning to you. If you are unfamiliar with standard size 675 hearing aid/CI batteries, they look like this: 

The photo is pretty close to actual size (ignore the blue thing, which is the plastic tab that protects the batteries before you use them).

What should we do with this little gizmos? Get those creative juices flowing!

The Merchant of What? Where?

I love Shakespeare, particularly his more raucous comedies. But I hadn't been to see live Shakespeare in years, due both to lack of time and to growing frustration with my inability to hear and understand the actors. When my mom suggested we attend the Colorado Shakespeare Festival's rave-reviewed Merchant of Venice, for my dad's birthday, I accepted with considerable enthusiasm, tinged with a bit of uncertainty as to how the CI would fare in this new setting.

And . . . it sucked. Not the play, which apparently was quite good, but the CI. I tried adjusting volume, sensitivity, and program, and nothing helped. I could tell that I was hearing more than I would have previously, because at one point I took the processor off and could barely hear a thing from the stage. But I couldn't understand much at all. There were one or two actors whose voices were particularly clear (Bassanio; the foiled suitors), and I could both hear and understand their words beautifully. The rest of them, though, might as well have been speaking Urdu (or Italian, for that matter), given how few of their lines I could comprehend.

The performance was lively and very physical, so I did my best to follow along without the benefit of the iambic pentameter to guide me. Unfortunately, the futile effort of trying to hear taxed my already fatigued brain, and I ended up dozing dozed through much of the first half, and nearly all of the second.

In short, the CI flunked the theatre test. Next up, the movies.

Uneventful.

Today's appointment did not bring any revelations, milestones, or other noteworthy happenings. My audiologist tweaked the map a little bit, giving me a bit more range in the soft sounds and adjusting the lower frequencies to, hopefully, facilitate the still-elusive blending with my hearing aid's sound. She also gave me a telephone program that I think I like better, bumped the volume up a little in my primary program, and gave me a slightly louder program, just in case I need it. All in all, the appointment was a non-event, although, as always, it was very gratifying to have Kristin note my continued progress.

Ridiculously late tonight, I'll be boarding a plane for Boston, returning just as ridiculously late on Sunday night. Race report to follow!