Heart Racing

As the grandson of both WWII and Korean War veterans, Memorial Day weekend will always hold a special place in my heart. And after spending 20 years in Indy, the weekend wouldn't be complete without The Greatest Spectacle in Racing, The Indianapolis 500. Today marked my 12th straight trip to the 2.5 mile oval, but my 1st time with bi-lateral CIs. Sparks flew.

Having spent 4 of these 12 here as a member of the Purdue All-American Marching Band, I've come to appreciate the pre-race traditions and festivities as much as anything. One year as I was standing with the band under the pagoda waiting to play the National Anthem, I turn around and catch Chistopher McDonald snapping a picture with me. You may know him better as Shooter McGavin, the kind of guy who eats disgusting things for breakfast.

But back to the music...I always enjoy the Florence/Neighbors one-two punch of God Bless America and Back Home Again. Though they sound slightly flat and shaky to me now, they come through with plenty of volume. "Banner", performed by Seal and Kelly Clarkson with David Foster on Piano, sounded melodic though slightly off key to me, but I honestly don't remember the singing so much as I remember this:

Got to get me one of these

After waiting over 3 hours in the hot sun, the race start has got to be the coolest thing that happens all day. There's all this buildup, then 3 short pace laps, then they're off, screaming past at speeds I only wish I could get my Saturn up to (and I've tried). We sat near the entrance to Turn 2 today, and I'm telling you, there is nothing much more awesome than watching 11 rows of 3-wide come flying by at 220mph.

After the 1st pass at speed, I realized right away that my CIs were making this much more enjoyable. They do so much limiting and sound processing that I worry neither about volume adjustment nor distortion. I remember just last year on the end of my hearing aid life things sounded very distorted and it was nearly impossible to hear or understand the PA announcer. Today, as long as there weren't cars flying by, I could follow the PA relatively well and the cars sound like they always did just a little softer...less ear-deafening roar.

 "That's Focus"

I had to experiment a little, so I took my CIs off for a few laps and sure enough, I can't hear an Indycar passing 50 feet in front of me. I can feel the bleacher vibrations and the wind from the cars going past, but I don't hear anything, which is crazy considering all the years I've spent here knowing how loud these things are.

This also puts it into perspective for me what a great job my CIs are doing since the only thing I hear with them on is CI processed sound, and it's a dang good job of recreating what an Indycar sounds like; that Doppler effect as the cars approach and pass, it'll never get old to me. I also tried listening with one at a time, and since my Right CI is well ahead of my left I'm still hearing a clearer, more realistic sound over there, but the two together makes it SO much better then either one alone.

The race itself did not disappoint. Ganassi dominated much of the race as usual. The Danica-lovers got a 10 lap tease to make them think she actually stood a chance...and of course she whined about not having that chance post-race (axe the go-daddy commercials and I'll stop hating). My personal favorite driver Tony Kanaan had a shot but late pit strategy left him 4th at the finish. Then with the race in its final lap, a guy no one's heard of, J.R. Hildebrand looks to be the 1st rookie to win The 500 till he crashes out of turn 4 (the very last turn of 200 laps) and the win goes to Dan Weldon. Always a great time at the track, always exciting action.

Overall this was one of the best races I've been to. It's an added perk not having to worry about hearing protection ever again (if you show up to this thing and don't wear earplugs, you leave with hearing loss). I'm slowly falling in love with my CIs as I'm racking up one experience after another that are SO much different than what I'm used to. Even though it was a brutal 7 hrs in 90 degree heat, there's no place I'd rather be to close out May. God bless and protect all of our Armed Forces. Happy Memorial Day everyone!

What The Heck Is Osteogenesis Imperfecta?

Back in my first post I mentioned a condition called Osteogenesis Imperfecta. Many years back, one of my ENT doctors suggested I might have a mild case of this causing my hearing loss, frequent broken bones as a child, and explaining the blueish tint to my sclera. More recently, my CI surgeon recommended I meet with a doctor who diagnoses this condition. That appointment was today.

Just by looking at my major joints the doctor ruled out any chance of this being a serious case, in which babies can actually break bones at birth. My breaks were more sports related as a child, which is to be expected as the middle of 3 boys, though they were frequent fractures sometimes without much force. The doctor did note my blue sclera and commented that it would be great if some of the medical students at this hospital had a chance to see my case (always love being the anomaly).

So I had the always-joyous privilege of completing a blood-work order as well as a bone density test which I will get results from soon. I also scheduled a follow-up at which they will do some gene testing to see the possibility of this being passed on some day. To be honest, this is something that's been pressing in the back of my mind for some time now so it will be nice to know at least. With all of the emotions and experiences I've been through with my hearing loss, I can't imagine ever passing it on to a child. But if that day did come, at least I now know first hand the capabilities of CIs, and I tell you from the bottom of my heart: these suckers are awesome!

For now I'm waiting on some test results which at worst looks to be a very mild case of Osteo-Imp. Sometimes this condition can worsen later on as an adult which is why it's important for me to start looking into it now. Probably won't hurt to up my Calcium/Vitamin D intake in the meantime...that is, up it from zero.

Whenever I get consumed by this bone condition I appear to have, I'm always reminded of a verse in Proverbs:
Proverbs 3:8
"Then you will have healing for your body and strength for your bones."

I'll post updates on this as I receive them.

Hookup Pics

I'd like to start by thanking my good friend Justin Kirby for contacting me out of the blue after 10 years and offering to capture these amazing pics from my Left CI hookup. If you enjoy what you see below you should check out his other work here.

May 5th, 2011 was the date of my 2nd hookup. Enjoy the photos (along with my credulous captions), click to enlarge.

  

 

Lining up the transmitter with the magnetic receiver under my skin, wore plenty of deodorant. The new CI is connected to my audiologist's PC interface equipment.

 

Patiently awaiting the first sounds, admiring the coloring collage across the room. (low-quality photo by me, just clarifying)

 

 Creating my 1st "MAP", which is finding the upper and lower thresholds of electrical stimulation to my cochlea, allowing me to hear both soft and comfortably loud sounds. 

My always-helpful-audiologist, Katie, creating the MAP as I signal when I 1st hear the soft sounds and when the sounds become uncomfortably loud. (I like this pic because I hardly get to see the back of my head...impressive battle scar) 

"You mean I can pick up underwater CIA transmissions with these suckers?! Whoa, WHOAWAA, wait wait wait...Captain, I'm receiving an urgent distress signal!"

Today I had the privilege of driving home through a hail-infested-monsoon. 6 months ago it wouldn't have been much more to me than a faint crackling, if that. Today it's so loud and clear I turned my car stereo off just to listen to it. With only my Left CI (active for 2.5 weeks) it sounded like a deep waterfall in an echoing cave. To my Right CI (active for 4.5 months) it sounded much more short and crisp, like snapping bubble-wrap. Then when I put them together it sounds like giant, beautiful raindrops dancing around my car, as realistic as I could ever remember it sounding.

I can't tell you how great of an experience it has been regaining bi-lateral hearing. There is SO much information the brain receives when hearing from both sides, it makes things immeasurably more defined and completely changes the perceived sound into something clear and pleasant. I've told a few people that hearing from only one ear is a lot like waking up and having 1/2 of your nose stuffed, restricting your breathing on one side. Regaining hearing out of both sides feels just like that moment when both airways become clear and you can breathe freely again. It's improved my senses, my awareness and my perception of everything around me.

Thanks again to Justin for the awesome photos...now about that rain. 

It's always a good day when the sun's shinin'.

The Tables Are Turning

I've been in San Diego on vacation for the past 5 days and I sit here tonight refreshed, relaxed and wrapping things up before heading home tomorrow. Feeling grateful to have experienced so much this week, it's hard not to remember a time not too long ago when a week like this would have been marred by frustration.

The greatest thing about receiving bi-lateral Cochlear Implants, for me, has been coming to the realization that I am NOW on a journey upwards, forward, increasing in clarity. I've spent the last 4 years watching both of my ears drop out, first the right, then the left. It seemed like a slow, drawn out progression that I secretly hoped would either reverse itself or eventually stabilize. It didn't.

To be honest, losing my hearing has been the most difficult thing I've ever had to deal with. As the volume and clarity continued to decrease, I found myself disconnecting with the world around me and slipping silently into a secret depression.

How will I continue my career without communication?
How will I ever meet a girl if I can't ask her name?
How can I ever be a father if I can't hear the baby cry at night?
Will I ever be able to make a meaningful connection with another human being without touching their face?

It got to the point where I dreaded phone calls. I honestly hoped my friends would forget to invite me to dinners and gatherings. The pain of being around all this conversation with no effective way of joining it made the thought of my lonely room and a book a more appealing option. That said, I couldn't ask for more loving/caring friends and family. The support I've received through all of this was never lacking. There's just a short list of things that can erase the disconnect of hearing loss, if any.

But #1 on my list would be Cochlear Implants. Within a week of turning on my right CI, I never wore my left hearing aid again. In 4 short months I've already begun to see a drastic, rapid increase in volume, clarity and range of frequencies I receive. Having my left CI on for just over a week now, and realizing that I've yet to tap into the full capabilities these miracle devices provide has filled me with a joyous outlook on the direction my life is turning.

Earlier today I spent a few hours kayaking around San Diego Bay. It was an experience filled with brilliant sights and beautiful sounds. And I soaked it all in....along with some sun. The splashing was no match for my water-resistant processors. I simply leaned back and cast away my cares as I reflected on how much my life has changed and my abilities have broadened in the past 6 months. Vacations should always be this way. Refreshing. Relaxing. Encouraging. I head back tomorrow with a revived mindset of what I'm capable of. Thank you Dan, Penny, and Nathan for joining me in a week of experiences I feared no longer possible.

Good night San Diego. It's been real.

It's The Little Things

I've been vacationing in San Diego for 3 days now. One of the more relaxing things I've been able to do this week is spend a little time each morning on my buddy's back porch, doing a little reading, sipping coffee and enjoying the sounds.

Clearly San Diego is known for its sunsets, not early morning sky-art. This is due to low air pressure over the bay and ocean water being unable to push the clouds out until the air warms up at midday. It's kind of funny because each morning I wake up thinking, "man, another gloomy day in sunny San Diego", then by noon you can't find a cloud and I can't figure out what happened, or where I left my sunscreen.

But the best part of these early morning coffee/book sessions is just "hearing". The house I'm staying in is located a few blocks from any "main" road, so while I do hear the occasional car, most of the sound I hear is coming from birds. Not long ago I couldn't hear birds anymore. I thought maybe they all just flew away or decided to shut up for good. It's funny that once you can't hear something anymore and then you get it back, it can go from an annoyance to something symphonic. This morning my CI-enabled Symphony consisted of:

• Birds of at least 5 different varieties
• Cars
• Trucks
• Motorcycles
• Car Horns
• Car Alarms
• Trucks that need new mufflers
• Owls
• Whisping Winds
• and Airplanes

Screaming loud Airplanes. I live close to an airport at home, which helps make it a little less of an adaption, but THIS couldn't be much closer:

 And yes, it really does get sunny in San Diego. Can you spot the clouds?

So for a few more days I get to kick back and enjoy a multitude of sounds I thought were lost forever. 6 months ago my outlook on life was in line with the first picture, today, it's the latter.

Waging War In My Head

Now that my Left CI has been active for 5 days, the triangle that I mentioned in my last post has already faded away. What's still very present in its place takes me back to my college days when I was mixing tracks for a sound design class. One of the effects I used often in post-processing things like explosions and thunder was called "CATHEDRAL". If you can imagine the way sound reverberates and lingers in a ginormous Roman cathedral, that's similar to what I hear all the time...slightly exaggerating there, but it's the closest way to explain the drawn-out sound I'm hearing.

Of course that's only on my Left side. My Right CI, active for nearly 4 months to the day, is hearing sound very much like I remember it before I went completely deaf. These massively opposing signals to my brain have quite frankly been driving me nuts. If I hear a simple "tap, tap, tap" on a desk, it's staccato on my Right and Nuclear Warheads on my left, quietly in the distance of course (is there anything "quietly" about nukes? Heck, is there anything such as "distance" from nukes?).

Ok, back on track. To think I just got done preaching "patience" and "it takes time". I'm quickly realizing the hardest part of doing one side at a time is that the 2nd time around it's very easy to expect quicker progress. I know what it can sound like and I want it to BE THERE, now. And if it's not there, it's equally easy to suspect something must be wrong....while in reality I'm likely moving at a quicker pace this time than last. It's just impossible to see the progress when my brain is getting two completely different explanations of every sound that enters my head. Here's a good one: You know that old game "Telephone", right? Where somebody whispers a story to another person and it passes down the line until you see how JUMBLED it got by the end? I feel like I'm getting the original story and the final story at the same time...ALL THE TIME. MAKE IT STOP :)

In case you're wondering why I did the surgeries separately, it was because after the surgery you have to wait around 4 weeks while the ear structure heals before they hook up the CI. I didn't want to be completely deaf for this whole period so that I could still work and (attempt to) communicate. Since my Left hearing aid still worked, albeit dreadfully at the time, I decided to do my Right 1st and then the Left.

So today I'm working on wearing the new (Left) CI by itself as much as possible. Every time I turn off the Right side it sounds SO quiet at 1st, but the longer I spend with just the Left I gradually perceive more and more sound and volume. I know my new CI will come up to speed in a seemingly short period of time, but for now, it's like "LET'S GO ALREADY".

Finally, I must share with you my favorite New-CI-Crazy-Sound-Coping-Technique. Right now, and for about another month or two, I can produce sounds that, to me, sound JUST like I'm scratching records and dropping mad-skillz beats in a techno-beat-laboratory (yeah, I said it). Beatboxing is sometimes the only thing that helps me cope with these whacked-out sounds and gets me through the day, hopefully not at the expense of my co-workers (I try to keep it down, and hey, I can hear really great with these CI's so I don't have to be loud anymore...unless I just WANT to). I can distinctively ride a hi-hat open and closed, very accurately re-create one of those "inverse" sounding drum pad effect thingys, and then cook up and drop some sandpaper-scratching-snare beats. I would demonstrate for you, but of course you just wouldn't hear it like I do. Alternatively, I leave you with this:

Again, MAD skillz. Just silly sick. There is no debate.

Packing up and heading to San Diego for my first vacation on CI's...I hear it's sunny there this time of year, and, well, every time of year. Look for an update on my adventures to follow.