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Thursday, June 25, 2009

Colorado bound!

In a couple of days, I'm going to be one with nature. Mostly off the grid, so to speak. Where? In lovely, colorful Colorado, the Centennial State, home of the highest altitudes in the continential United States. Coincedentally, one of those peaks will be my group's destination - Mount Harvard, the 4th highest peak in the lower 48. I'm raring to go, can't wait until Saturday!

One of the issues I face is two-fold - 1) going off the power infrastructure for so long means I'm not likely to be CI equipped the entire time, and 2) incorporating a new friend into the fold - Mike, Tara's boyfriend, is still learning sign language. It'll be a challenge for him. I'll probably be free as a bird, unencumbered by the need to listen for conference calls and dance cues. It's a different side of the world than I face daily. So, once again, for at least a week during my summer, I'll be immersed in ASL/SEE/CASE.

I shan't leave without at least this promise - I'll journal and photo-document the journey, and post here upon my return. Until then!

Monday, June 22, 2009

HLAA - summing it all up

Now that I've had a day to reflect upon my adventure, I'm left with a sense of belonging... and a connection with a family. Truly, my trip to HLAA and meeting the wonderful, positive, supportive friends and acquaintances let me know that, yes, no matter your hearing loss, someone knows what you're going through and there's never a need to believe you're alone in your struggle.

I say that because while I felt like I fit in, and that many, many others at the conference did as well, there are still those who are afraid of their hearing loss, their disability, their need to "be hearing" overcoming their acceptance of themselves and who they are. I came to terms with my hearing loss at last when I chose to go to college at CSUN that had a sizeable student population with hearing loss, seeking a chance to meet others who were like me and to struggle through school together.

There are those I met at the conference whose single track mind was "will I ever get my hearing back?" Those were the low points of the conference to me -- how can I, who was able to get past my current limitations, break through to someone who wouldn't be satisfied with anything less than perfect hearing? There is still much work to be done to remove the stigma of being deaf and all the stereotypes associated with that.

The conference was very scientific - excellent for a nerd like me, not so great for those who haven't cracked a science book in 50 years. I'm hoping that we won't dumb down the conference, but instead seek out speakers who can deliver both a highly technical yet convey the information in an engaging and interesting manner.

In any case, I'm looking forward to the 2010 conference in Milwaukee, and will be playing some part in making the young adults an integral part of HLAA.

Sunday, June 21, 2009

I'm toast

Ugh, as I attempt to mentally rejoin the living, here I sit recapping on my 3rd day at the HLAA convention. You'll want to excuse my frazzled brain that's still recovering from being up until 3am!

1) Missed connections - where were you, oh St. Louis chapter ones? Apparently there was a miscommunication and the St. Louis chapter and the KC chapter meetup didn't go off as planned. Therefore, the KC chapter (myself, Shanna and Minda) held a breakfast pow-wow to address our own chapter issues. Looks like we're gonna have an interesting exec board meeting on Thursday then....

2) I hopped over to the "Social Networking" presentation and caught fellow blogger Jennifer Thorpe getting us all awake with a resounding "Ye-haw!" Covering a number of tools and methods that people can use to improve upon a common issue among the hearing loss community - how to connect with others instead of being isolated in our world without sound. Showcasing Facebook, Twitter, LinkedIn, MySpace, DeafVillage, and a few other sites, I got the impression that all those there definitely will be a lot more vocal about their place in the world!

3) An almost impromptu gathering of the "young adults" of HLAA snuck into a room during lunch and discussed the futue of 18-35 year olds at HLAA. What's our place in the organization? How can we have our voice heard? What can we do to truly fit in? We brought out our issues, and Chris Sutton was able to capture a number of ways we can move forward - a) Get representation on the HLAA board; b) Set up a virtual chapter online; c) one more item that I'm forgetting right now, but clearly people will need to step up and take the reins of these new initatives. Looks like I'm one of those people!

4) The rest of the afternoon is a bit of a blur - nothing really interesting pops out, the chapter development stuff wasn't holding my attention, the "Wireless Apps" panel was a rehash of stuff I knew, and retreading the exhibit hall was getting a tad old. So, I was quite glad when 4:30 rolled around and scooted off to my room to get some rest!

5) The best part of HLAA is making connections; this final evening together is no exception, and truly, I think you learn so much more about people when you're out together. My friend Lindsey from Vanderbilt and her friend Applonia joined the gang that set out for downtown and a night of kick-ass music. I somehow got roped into a bet that I failed miserably on, which, in the interest of time, I will get into later. All in all, some blues, some country, and some R&B really rounded out the evening.

I'm on my way out for lunch and then to the airport - Nashville, you were great! Stay classy!

Saturday, June 20, 2009

HLAA - Day 2

I can't seem to escape line dancing. It's everywhere here.... it beckons to me with its siren call. A hundred people, in scattered rows, crammed onto the tiniest dance floor, hootin' and hollerin' while spinning around, clapping, stomping their feet, and having a kickass time.

Yeah, but I bet you don't wanna hear about my two left feet. Day 2 at HLAA - take Day 1, and multiply by 2. That's the amount of information that got crammed into my brain and notes, then spent the evening making even more new connections and new friends. Let's see if can sum it up before I run off to my chapter development meeting....

1) Hair Cell Regeneration Symposium. This hugely important seminar generated quite the attendance numbers! 3 major panelists spoke at length about their research into bird and mice cochleas, what their results were, what their methods have been, what breakthroughs were generated, and what cells and genes they were manipulating. What struck me was that I did not anticipate the number of people who, when Q&A rolled around, were far, far, far more intent on "when's it gonna finally make me hearing again?!" than "wow, so when you did method X, how did result Y occur?" I think I'll have to write a whole 'nuther story on my Q&A observations. I did get to speak to two of the doctors post-lecture, both were extremely knowledgeable about their field and I got the sense that they were doing everything they could to want to meet the audience's desires - however, only luck and lots and lots of money will get us to where we have to go. I've got an extensive amount of notes from this 3-hour tour, so as soon as I parse through it I'll have something more to report.

2) Young Adults panel - 4 people I've recently became acquainted with spoke to a pretty full room of other 18-35 year olds, talking about things relevant to our age group - fitting in, surviving college, and getting jobs. They all had diverse perspectives on how they approached and handled challenging situations, and I believe the audience gained a tremendous amount of knowledge and wisdom from the panel.

3) I got pulled away from another presentation to help Shanna Groves of to host her book seller and sign copies of her book, "Lip Reader." Being assigned the duty of photographer, it became quickly apparent that while I've got an eye for flair, I'm too easily distracted by fellow conference go-ers to remain on task. I learned that I've got to stay alert and ready to snap!

4) Content with Shanna's success, I hit up Advanced Bionic's reception to meet fellow AB CIers - and I met my doppleganger! Well, more precisely, apparently someone from where I live now moved to my hometown of Valencia, CA at about the same time I moved out to the midwest. So we're swapping stories about exact locations around Six Flags and Sprint HQ, and now I've helped a fellow Los Angelino know how to beat the traffic. On top of that, we've got this gigantic AB picture of all AB CIs at HLAA - looked to be about 50 of us there. Nice!

5) Ah, the birthday dinner. Delicious buffet, not so crazy about the weird old guy who kept trying to shush my table while there were various speakers going on about the passed founder of HLAA, Rocky Stone. There was quite a bit of mingling going on around us, people eating, walking around talking, and still we got that one person fixated on our table. We were respectful to the presenters and to those around us, and we were out of his view of the speakers, but still, he got really upset even when we were signing to each other! Oh, well. Then came the line dancing with a live band.....

6) Not content to just chill on the dance floor, the remainder of the evening was spent at the after-party. A not-insignificant number of us crashed a suite and sampled wine, checked out the view from the balcony, talked with some of the college kids. I ran into an old friend from CSUN who's living in DC and is part of the committee going to Deaflympics in Taipei - Nice! To put it succinctly, it's not often that I go to a room party and still understand just about everyone there - everyone there had a hearing loss and either signed, or did everything they could to speak clearly. Definitely way better than any hearing parties I've been to, blasting music and slurring their words.

Now I've spent way too much time putting my thoughts into text. I'd better get ready for a grueling day 3!

Friday, June 19, 2009

HLAA - Day 1

I'm bushed. Holy moly, the Hearing Loss Association of America conference peeps know how to have fun! In an effort to be brief (and to get to the Hair Cell Regeneration symposium early enough to grab some good seats), I'll see if I can sum up yesterday:

1) Smooth flight into Nashville Int'l - couldn't have asked more from SWA. Window seat, Zune playing tunes all the way, and tailwinds shaving off 15 minutes of flight time. I'm recalling a movie scene: "From now on, Frank, that's the only way I fly - tailwinds all zee way!"

2) National Rental Car was out of just about everything, but because I've been such a long standing member, they bumped me up 2 car classes at no charge - getting to drive around a kickass Nissan Murano SUV. A pity I'll be inside most of the time, but then again, getting around town at night's gonna be no problem with this baby!

3) Had to make a special delivery for some co-workers at the Sprint booth who'll be tirelessly working the exhibit hall floor. Seems like we got most things worked out, and of course, who else shows up but our friendly Graceland neighbor, Elvis! So now I'm officially linked with the Hound Dog. Awwooooo!

4) Checked out some tech presentations and exhibits later. Met up with Mary Stodden from the St. Louis chapter, we're gonna plan some trips and meetings to get some mentoring going from her chapter to the KC chapter. We're badly in need of some guidance, and I'm absolutely thankful she's offering it.

5) Then we get treated to a phenomenal opening ceremony! My favorite VP from my CapTel vendor, Kevin Colwell, was the sponsoring speaker; several inspiring speeches from various HLAA members and affiliates tided us over until the man, Dr. Vinton Cerf, got on stage and totally made my night! Dr. Cerf made nerdy science look COOL! My gosh, talking about ARPANET, GoogleDocs, Twitter, Facebook, Google Wave, Google Earth, captioning on youtube, HDTV Captions, auto-captions and auto-translation, and an interplanetary communications network, just.... you're the man!

6) Capping off the evening - a karaoke and dance bar opened up for HLAA only. I couldn't really make sense of the singing but that's probably the idea! About halfway to midnight, a huge group of 15 of us "young'ns" took over the mics and belted out "Lean On Me." Got everybody in the house singing along with us, it was great! Not so much when we got called back for an encore with "Thriller...." We just couldn't channel Michael Jackson! :-p Then they took out the mics and started playing dance music - Cha Cha Slide, YMCA, and of course, line dancing. How'd I get roped into that, I'll never know. ;-)

Onward to Day 2!

Thursday, June 18, 2009

Off to honky-tonk land

Going to Nashville with LUV! ;-) I'm all set for everything, from car reservations to presentation notes printed out and dinner plans each night. Oy! Barely a moment to spare to go and see the town again!

A couple of years ago, I stole a chance to hit up the land of the Titans with some work I had to do for the great state gov't of Tennessee. I took a drive down from St. Louis, a winding 5 hour trek through parts of rural Illinois and foresty Kentucky. Western KY reminded me a lot of central NC, very green even in October, heavily wooded and very rolling hills. I spent a evening doing outreach at a pretty fun event, which I'm not recalling the name of at this time (and that I will stealth edit later to pretend like I do know ;-) ). I met quite a diverse group of people there, and most recall one signed song that I used to like a lot back in middle school - "Born to be my Baby" by Bon Jovi. It was really neat to finally see that song signed and dramatized in a way that got the true message of the song across, which wasn't apparent from just reading the lyrics to a 12-year old.

Aaaaand I'm off to where the Control Tower orders traffic around. See ya'll in the Volunteer state!

Tuesday, June 16, 2009

Heavy rain + Beach Volleyball = .....


Photo credit: Drake University

Hopefully, tonight's game won't end up leaving me looking like that pic....

Sunday, June 14, 2009

Hair Cell Regen Symposium @ HLAA Convention

I've got a circle of people who aren't able to go to HLAA but are really really really darn interested in the Hair Cell Regen symposium. I'm gonna see if I can submit questions early this week so that I can get answers for my group from the perspective of all the panelists. I figured I'd list the questions I have here and if you have any, feel free to add and I'll get 'em in. I don't want to monopolize the Q&A time, plus I think I'll get better answers if the docs have a chance to think about their answers beforehand.

1) What timeframe are we confident that we will begin human clinical trials on hair cell regen?
2) What trials are being done on animals or pre-human testing today?
3) How does one participate in such human clinical trials? What are the costs, requirements, and circumstances around such a trial?
4) Assuming human trials are concluded and approved, what kind of hearing improvement could one reasonably expect from such a procedure? What hearing level, post-procedure, is realistic?
5) What kind of candidacy requirements are expected for such a procedure?
6) How will one's existing hearing loss affect the expected improvement to one's hearing?
7) Will such improvements start in the low dBs, or to the highs, or across the board?
8) Is the procedure repeatable to continually improve one's hearing, or will it be a "one shot" deal?
9) What kind of costs are expected with this procedure? Will it be cheaper than getting a CI? Will it be affordable or only available to the rich?
10) What kind of insurance implications will take place with this procedure? Will it compare to what it is like today to get a CI?
11) What risks are expected for such a procedure?
12) Are there risks that may impact more than just the ear and hearing?
13) Is it expected to be safer than a CI, from both a surgery and lifestyle perspective?
14) In such a procedure, would someone with some existing residual hearing run the risk of losing such residual hearing, i.e. go completely deaf if the procedure is not successful? Or will that hearing be left intact and the procedure simply supplement one's hearing loss?
15) Will having a CI already implanted complicate the procedure? Is it better to have "virgin ears" with residual hearing and no CI to remove?
16) Would someone who has been deaf for a long time benefit from this procedure? Would it be better for someone to have a CI for a long time and have this procedure, or be deaf for a long time and have this procedure?
17) Will CIs become obsolete shortly after this becomes available?
18-NEW) Does it make a difference in the procedure's chances of success depending on whether the patient lost their hearing due to the environment, or due to their genes? I.e. what impact does this have on Connexion 26 patients?

The majority of questions originate from DeafDude @ Good questions, man.

Friday, June 12, 2009

Overland Park Arboretum

So I'm in the middle of this nature kick - prepping for my cornerstone event for the summer, camping in Colorado. The capstone will be reaching the summit of Mt. Harvard, some 14K+ feet above sea level. Apparently, such a hike is actually quite challenging and dangerous, as the air starts becoming hazardously thin above 10,000 feet. We're actually going to be STARTING just under that thin limit. Yikes!

Mt. Harvard. 3rd tallest mountain in Colorado. ~13 miles to hike, roundtrip. Almost a mile in elevation change! Sounds almost as hard as actually getting into Harvard! Some more stats can be found here:

Now, the more I read about conquering 14Kers, the more nervous I get. Weather plays a tremendous part in the success of the hike. So does being fit and mentally prepared for the long-ass trek from trailhead to peak and back. Will we have enough water? Will we be acclimated to the altitude? Will the packs be light enough with all that we need? What if an emergency occurs? Will I actually get a ride down in a helicopter, finally? ;-)

I can't worry about everything. But I can make sure I can shoulder my own load. So I loved the suggestion from Kel to hit up the OP Arboretum. It's gorgeous! Kelly, Tara and I started out taking the hilly and slick-from-rain southern most trails and it almost felt like I was back in Yosemite or in some South American rainforest. I could've done without the off-road vehicles making deep tracks in the trail, but the air felt clean, the trees vibrant, the woods silent, and the walk tranquil. There were little brooks and streams throughout the trail, yellow monarch butterflies and black dragonflies humming all around, and there were little signs of wildlife - no bears yet, though! ;-)

After Tara had to leave, Kelly and I hit up the more garden-y parts. There were quite some stunning displays of flowers, but what really got me were the, well, rather creative pieces of art. The most odd was some liberty taken on dressing up a crow with a purple pointed hat on some yellow box and just looked like the artist just dropped wayyyyy too much acid. And then there was the SPIDER!!!!!! Why people would want to glorify such a ignoble insect through art remains beyond me.

Overall, yesterday was a great day. I definitely do want to take another walk through the forest from the other direction, perhaps when it's a little drier. But I think that in all of KC, it's now my favorite place to take a walk.

Thursday, June 11, 2009

Godwin'd in one

60+ years after the conclusion of World War II, the Holocaust is still a touchy subject. We have Neo-Nazis, "Holocaust Deniers" (or "Revisionism," as they would like to call themselves), and people who just hate Jewish people continue to attack them in any way possible.

Holocaust Deniers astutely try to establish that either it never occurred, or that it didn't occur in the way we read about it in history books. I tend to put these people in the same category as those who believe we faked the moon landing, or that 9/11 was perpetuated by the Israeli government. Crackpots, the lot of 'em.

So it's incredibly disheartening to see some people will kill over this blind, misdirected hatred. I was talking last night with Tara about seeing the Holocaust museum in DC, which was an incredible experience for me nearly 10 years ago when I was enroute to the NAD conference in Norfolk, VA. That was a true treat for the history buff in me - from the first stop seeing the shoes of those who have left us, to the experiments and treatment of those incarcerated - it's left an indelible mark on my soul. I want to go back again and really spend time analyzing instead of memorizing key points for College Bowl.

My grandparents on my Dad's side are Jewish and had many relatives throughout Europe, mostly in Russia but quite a few in Poland and westward. It's not a subject my grandma Bubie ever likes to clarify, so I'm left with the understanding that them leaving Moscow in the '20s is the reason I'm even around today.

I'm a tad bit upset this morning - yesterday, there was a shooting at that very DC Holocaust Museum - a security guard was killed. All because some Neo-Nazi rationalized that Jewish people are the root of some conspiracy, and his lashing out has killed some random guy who just wanted a paycheck. *furious*

So what's that got to do with Godwin? Well, I'm a member of some discussion forums, and apparently there is a 'net meme that has to do with Nazism, called "Godwin's Law." To paraphrase, the law is "As a discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches 1."

Statistically speaking, it's true - the longer you discuss something, the likely you'll compare it to anything, even Nazism. ;-) What did fascinate me is that not too long ago, I went looking for who was the most written-about person in the history of books.

The answer: Jesus
Who is #2? Hitler.

Hitler's only been around for 100 years. Quite a feat to accomplish that level of notoriety!

Wednesday, June 10, 2009

Gathering momentum

I'd like to give a shout out to Seth (happy belated birfday, bud!) who's been infected with the joy of captioning music videos as well. Whenever possible, Seth and I do try to crash concerts together, though it's rather difficult when his week and weekends do NOT mesh with my free time anymore.

Check out his overstream feed as magus831, he's got two vids up already:

"Crawling" by Linkin Park (great song!):

And "Rehab" by Amy Winehouse:

I'd also like to plug Bill Creswell's blog - "Captioning the Internet one video at a time" - it's a great resource for other captioned videos, most notably movie trailers that aren't captioned.

Time to get going off for work. I'm looking forward to taking a couple of vacations and getting out of town for a while. HLAA (Hearing Loss Association of America, is having their annual convention in Nashville, which is a great town to visit and soak up the culture. I'll be in workshops and lectures on topics such as Hair Cell Regeneration, Wireless Technology, Advocacy for Accessibility, stuff like that. I'll be touching base with people I've talked to dozens of times online but have yet to meet in person since I've helped form the KC Chapter. And, of course, my camping trip to CO with Kel, Mike n' Tara. That'll be kickass. And smelly. But mostly kickass!

Monday, June 8, 2009

Ting Tings #2 - "That's Not My Name"

Taking yet another rockin' song and making it readable to all!

The Ting Tings - "That's Not My Name"

On a side note, if you like signing videos, you'll get... a creepy feeling.... from watching this Marilyn Manson signed vid.

Friday, June 5, 2009

Captioned video project

Captions on TV are a godsend. While I cannot clearly remember the first time I saw the printed word on a TV screen, I do remember the tremendous feeling of elation at being able to FINALLY understand the picture box. I used to get in arguments all the time with my older brother over what was said - it even escalated to the point of having bets that, after 2 losses (and being $10 poorer), I learned I clearly do not have any clue what they're saying. Saturday morning cartoons like the Teenage Mutant Ninja Turtles were an frustrating exercise at figuring out the general premise, let alone the subtleties or nuances of a joke or off-hand quip.

Now we're in the age of the internet - and captions are conveniently left behind. I get why - growing up, everyone except my mom complained the captions were "distracting" and took every opportunity to turn them off. Still at every gym, and nearly every bar I go to, the TVs have captions on - and it should continue to get more pervasive as the loudness war ( escalates.

The loudness war fascinates me. I would have thought that increasing one's loudness would not necessarily sound better, but less.... well, defined. I have friends who can pick out individual instruments among an orchestra, and if you simply made it louder, I imagine that the finer sounds would disappear. You'd no longer be able to appreciate the little noises. A loud "THUMP" on a bass drum totally drowns out a piccolo. But I'll save that discussion for later.

Anyway, I've started captioning music videos for myself and my friends. My first one is the kickass Ting Ting's "Shut Up and Let Me Go."

You can see it here:

It was actually pretty fun to work on. I'm stoked for more! I'm working with a few other people so this will be a group effort. Stay tuned for more to come!

Wednesday, June 3, 2009

Brotherly love

Family can be great. I mean, most people I know have good relationships with their parents and siblings. Not so much for me while growing up - it was pretty adversarial. My Dad divorced my Mom and his bossy "new family" strained our relationship; my step-Dad was certainly winning no "Father of the Year" awards. My older brother was away as often as he could be; band camp, volleyball, basketball, anything to get out of the house. Following in my older bro's footsteps, I also did my very best to distance myself from home as soon as possible - leaving my younger bro, Mike, behind to fend for himself.

Come earlier this year, and Mike is still living at home, stuck in a rut and not going anywhere. I'm given an opportunity to possibly make up for some of the, well, rift between me and the family. Don't get me wrong, I love my blood - but I never felt like I fit in, almost like being the black sheep. So Mike's moved out here to KC to live with me - time for bonding, right?

Eh, well - I'm learning things about him and his reasons for being stuck in a rut. He's extremely introverted, nervous around people, anxious in social settings, timid in making decisions, fearful of fire and knives, not willing to make mistakes, and not willing to go out.

But, being his big brother, y'know, maybe I can teach him a thing or two, get him to grow up, become his own person. So, right now, I'm playing the "10 rejections" game with him. He'll go out and ask for a job application. If they say they're not hiring - he gets 1 rejection. Otherwise, he fills out the app and moves on to the next job. 10 rejections means he'll get a prize from me. He's already up to 3 rejections today..... and 2 job apps filed.

From there, let's see if we can get him to cook a 5 course meal, eh? ;-)