Putting my Money where My Mouth is

I’ve always loved technology.  I still have very fond memories of playing with the family’s TI-99 console back in the day with my dad and how much excitement I got out of going to the local Big Lots with my mom and sisters where she’d let me pick out a game for our Atari (and maybe a model airplane, if I was lucky), and endlessly fiddling with our various home PCs.  Way back when, we had a monochromatic monitor with a simple, cursor-based word processor.  I didn’t love writing, but I loved playing with the thing.  The power of these devices, of course,  is a complete joke compared to what most of us now carry around every day in out pockets.

As I got older, most of the money that I earned working at the local pizza joint was piped into upgrading the family computer to soup-up my video games, then later into buying my own computer that I pieced together.  I went to college and majored in Computer Science, and today my profession is that of a software engineer / architect.  Buying a new piece of tech still brings me that childlike joy.

Because of my love and experience with tech, I feel like I have a pretty good pulse on how quickly it moves and what’s coming down the pipe.  There’s a guy out there by the name of Ray Kurzweil.  He wrote a fantastic book called The Singularity is Near.  The basic premise of this book is that technology is advancing at such a rate that computers will eventually be able to build faster and smarter versions of themselves, which will then go on to build faster and smarter versions of themselves, etc.  Basically, there’s a tipping point where computers will flat-out be smarter than humanity, at which point we’ll generally see some serious shit as every complex problem that exists in the world gets solved by rapidly-improving AI.  I think the projection was that this will all go down in 2040 or so.  I happen to think that the premise is inevitable, though the timeline feels either too aggressive or too incredible to accept.  Pick one.

I bring all of this up because it colors my perception of Alex’s hearing loss and what the future will hold in the context (AND THIS IS IMPORTANT) of what sort of opportunities he will have to be able to hear this world if he wants.

At this point, we’re not sure if Alex is even going to be eligible for any sort of cochlear implant (which would be necessary given his 90db hearing loss).  It seems pretty sad to us that our biggest hope for him at this point is a pair of relatively invasive surgeries that, if successful, will still require him to wear a very conspicuous apparatus on both sides of his head, but I find it amazing that this technology exists and has helped as many people as it has who want to hear or restore some of their hearing NOW.  In five years or ten years… these things will not look the same, or sound the same.

I have little doubt that within ten years a fully-implantable implant will be available for Alex that will perform better than whatever he might be implanted with today (if we’re lucky enough to be eligible for that option).  I actually brought this up to the ENT at our first meeting, who rightly said “But if it’s working, why go through another surgery?”  A perfectly valid point.  My mind at that point, though, gravitated toward “He’s right.  At that point, we’d wait until he’s 17 or 18 years old to get the best out there prior to college and take advantage of less traumatic / invasive operation methods and make sure that he’s the driver of that choice.”

Before I get off the topic, a cool note that the ENT brought up – Cochlear (one of the big three manufacturers of cochlear implants) implanted a few users with a very interesting design.  The internal portion of the implant includes microphones, which means that even when the user takes off the external piece of the apparatus, they still have some trace hearing through the internal part.  Essentially, it’s completely invisible hearing.  This implant also allows the external apparatus (the part that looks like the hearing aid and wire that leads up to the head) to be used, which allows the user to hear much better than using the invisible hearing mode.  Though the invisible hearing isn’t nearly as good, it’s still amazing to me that users would have the option of being able to do things with SOME hearing such as sleep, go swimming, etc, all without the clunky visible pieces.  Even cooler –  these folks were implanted eight years ago.  God knows what they’re testing behind closed doors today.

A like-minded friend of mine made an astute observation that I hadn’t considered, and that’s that the baby boomer generation is greatly helping to push money and resources into development of hearing aids / implants as they age.  Alex’s condition is clearly not a blessing (at least to us, no offense to the Deaf community intended!), but the fact that it affects as many people as it does makes it a high-visibility issue that researchers from different fields as well as assistive-technology companies are racing to address in increasingly innovative ways.

My dad was recently over at the house – he’s worn hearing aids for years.  I appreciate the hell out of the man, and I love getting his perspective as a guy who’s worn hearing aids for years and is generally well-researched.  He’s re-iterated many times that his hearing aids have VASTLY improved since he first began with them.  It’s great to hear that reinforced from a guy who lives in that world and has actually seen (heard) the benefits.  It makes it all more real.

Getting my feet back on the ground – all of this could of course be a moot point for Alex’s immediate future.  We probably won’t know if Alex can take cochlear implants for months, and even if he can, we don’t know how well his body will react.  Even if his body reacts well to them, the implants are only part of the equation.  Therapy and hard work is the other, larger part.

Overall point… it’s been wonderful and comforting to see what these technology-driven implants are capable of affording the young and old alike and to think of how much they’ll improve in the coming years.

Shannon and I recently joined a Facebook group of about 2000 parents of children with implants.  The stories and videos they put up are mind-blowing.  Kids singing in tune.  Stories of mainstreaming children with little to no issues.  Playing in the school’s orchestra.  Speaking with no sort of affect.  Videos of kids saying their first words only a few months after implantation.  Stories of honor roll, wonderful social lives, sports, music… the list goes on.  It’s been great to look at the results as well as the support system that’s in place in that group, as well as the sheer number of folks posting within.  These aren’t isolated superstars, they’re a large segment of kids with loving parents who fought through the surgery, dealt with the processors falling off, and got through the therapy to get their kids over the mountain that Shannon and I are staring in the face right now.

It’s all both inspirational as well as terrifying.  If the tech gives us an opportunity, Shannon and I will do whatever it takes to get Alex the therapy he needs to get the best results possible for his brain to wire itself up for hearing / speaking.  If we get the miraculous results that some of these folks are getting, then as time goes, the implants will get smaller and better, perhaps to the point that they’re always on, invisible, don’t need to be charged, and are either as good or better than normal hearing one day.  Perhaps the enormous amount of stem cell therapy being researched for hearing loss will give Alex a purely-biological option.  It’s terrifying because this is all building up a great amount of hope that could be squashed and send us down the path of devastation again.

If there’s a greater power steering any of this, I’ve considered that perhaps it decided to put my faith and interest in technology to the test by taking Alex’s hearing from him.  Granted, that’s a bit jerk-y of said power to do, but the thought has crossed my mind.  Hence the title of this entry.  Though it’s true that if we’re lucky enough to be able to go down this road (and yes, I know how odd it is to call it “lucky”) that our family’s dedication to our new addition and elbow grease will be more important to his success than the implant, it can’t be denied that the implant is still necessary to allow Alex to hear our voices in the first place, and it WILL improve, just as braces lead to invisiline and thick coke glasses lead to lasik.  It’s a huge component of Alex’s potential hearing future.

If… IF we can get the implant early on, when language development is key, I see a future for Alex where his disability melts into the background of his life in all ways and that the combination of hard work, technology, and familial dedication will overcome that mountain that was put in front of him.

We just need the chance.

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