More random thoughts, this time while watching the Yankees and waiting, somewhat impatiently, for my first mapping session...

Sam and I are both healing up steadily, if slowly. Both of us can still only sleep on one side, and Sam occasionally reports feeling like he has a football in his ear, but we're definitely improving. Tuesday is turn-on day for me, which sounds sexual but actually refers to the day I enter a new world of sound -- the world where, as mentioned before, everyone sounds like Mickey Mouse.

Some more explanation of getting turned on: A cochlear implant processes over 80,000 pieces of information a second and sends that info to the hearing nerve via 16 to 22 electrodes. The hearing nerve sends it to the brain. When the brain first tries to understand this new, electrically generated information, it has trouble so everything sounds the same, like Mickey Mouse. The challenge of hearing with an implant is not to hear "loud enough" but to retrain the brain to interpret the electrode stimulation.

80,000 pieces of information a second sounds impressive, but is nothing compared to what a regular ear can do. In his book Rebuilt (which, as I mentioned, is THE book on Cochlear Implants), Michael Chorost explains this really well.

Meanwhile, can't wear an aid in either ear these days, so the world is pretty quiet. The right ear, the one that was operated on, is so silent and surreal with tinnitus sounds it's as if it is wired to listen in to a different planet. Tinnitus is hard to describe, as it always changes. I took some notes on it last night and came up with this:

8-9pm: Three Arias from Don Giovanni mixed with the song of the Southern Pacific blue whale.
9-9:30pm: Trucks downshift while warm rain falls.
9:30-10pm: A rainbow unfurls and flaps in the wind. Japanese geishas titter.
10-11pm: Sound of waves receding. A woman walks by in a dress made of string. Did I forget to turn off the dishwasher?
11-11:30pm: Music for giant space babies.

Off the topic, I noticed during a Yankee rain delay that you can look up Joe DiMaggio's nose all the way to his brain. Also, does anyone know what the difference is between a checking card and a debit card?

In a pleasant coincidence, my work placement for school this year will be at the League for the Hard of Hearing, which happens to be the best place in New York to do auditory rehabilitation following an implant.

On another note, hey uh Becky? It's kinda hard to make a movie without a director and a camera.

Finally, a few people asked, so here is the website of Michael Chorost (author of Rebuilt: THE book on Cochlear Implants). It's www.michaelchorost.com and you can read the first chapter there.

Have a great weekend. Back on Tuesday.

Sammy pics

Hey all. A quick note along with two pics of Sammy post op. Note the pen mark next to his eye -- it is part of an arrow pointing to his left ear to ensure that the doctor operated on the correct ear. I have another pic of him with the bandage off, but it is pretty gruesome, looks like he's smuggling a clump of moldy noodles under his skin, and will only post it by popular request.

Sam is happy to report that his operation successfully cut off the BMW voice that had been messing with his sanity. My first mapping (aka when the device will be turned on) will be Sept 1st, so be sure to check in around then. Meantime, no exciting news to report, other than the mess in potemia, the eejits in power and the regular slow deterioration of the planet. But the Yanks are pitching better so that balances out.

Expectations

Michael Chorost, who earlier this year wrote THE book on cochlear implants (It's called Michael Chorost: THE book on cochlear implants -- no I'm kidding, it's called Rebuilt) sent me an email a couple days ago, part of which I want to share with you.

First, about his book, Rebuilt. It is a memoir of his experiencegetting a CI, and does a remarkable job of explaining the technological wonderworking of the device in a clear and exciting prose. Though it doesn't have a little brother being picked on mercilessly, Rebuilt a great, fascinating read and you learn so much about hearing and technology. It gave Sam and I a ton of help as we moved forward towards our surgeries and I know that my parents, Becky the film director, and Ben have all found it interesting as well.

Chorost took note of something I wrote in my second blog entry, which was in response to a question I received --- "When do you know if it works?" I wrote that in around two months, I thought we'd have a good idea: Chorost's response:

"Careful. Three months post, I was a very, very frustrated camper and nowhere near my present performance levels…But, you know what? Nothing I say is going to sink in to you. You will just have to learn in your own way. A year from now you'll be saying to me, "Now I understand. I couldn't have understood before, but now I do."

Which leads to an old gripe: why does wisdom so often sound like bad news?

So, I'm going to try and remember to be patient. I think as a long term goal, to get back to where I was with hearing aids a couple years ago, and maybe even a step or two past that, would be plenty. But really, if I can hear anything without the headaches I've gotten from sound the last few years that would be enough. And if I can't that would be enough too, only quieter. This perspective comes from another bout of vertigo this afternoon while watching the Yanks blow a lead.

Sam, meanwhile, has had no side effects, and is back to casing chicken joints and chasing down the perfect BMW.

Turn on date is in a couple of weeks. Blog entries will be intermittent until then, but global warming will continue. Enjoy the summah.

The Waiting Room

I'm getting better. Ear healing up, headaches fading. Stopped by the doc's for a checkup and he said all's going well except I shouldn't wear my glasses for a while so the incision can heal better. As I am currently unable to wear a hearing aid in either ear, insert your own Helen Keller joke here… The question remains still, will the bugger work? I hope it does. Silence is aight and the longterm prognosis is, as I mentioned earlier, 100 percent fatality, but it gets boring not being able to flirt, shoot the breeze and make fun of people out loud. I can't wear an aid in my good (non-surgery) ear these days because of the headaches, the other (surgery) ear is now, sans implant, as permanently deaf as a Supreme Court justice and this leads to, among other things, overlong blog entries.

I'm curious – what will the world sound like through an implant? Every implantee I've met says the same thing: different. Different how? I ask. They all say: I can't describe it. You'll just have to see.

Will people sound like I remember? Will dogs and buses and wind and rustling leaves and pots in the sink? What the hell do people sound like anyway, other then like themselves – except, it must be noted, for my father on his outgoing office telephone message, in which he sounds like a gravelly voiced black gospel singer comforting a young groupie while slowly asphyxiating to death. Creepy, I know. But my point: if people no longer sound like themselves, what will they sound like? That "you've got mail" voice? That "please stand clear of the closing doors" voice?

They all sound like Mickey Mouse, a lot of implantees say, but that's just the first couple of days.

Another thought: several of the implantees say that they can make out voices on the TV. Not all the voices and not all the time, but some. I'm looking forward to seeing what that's like. I can honestly say, in my life, I have almost never understood a single word on television without captioning. I could pick Letterman's voice out of a line up maybe, by his pauses and inflections, and every now and then I'd pick out a "Paaaauul" because I'd be waiting for it, but other then that, I couldn't understand a thing. So it'll be interesting to see if I can hear voices on the TV. If I can hear punchlines before I read the captioning.

You know what, scratch that thought, I watch too much of that crap as it is. I'll think up new goals for another entry.

Samboni is at the John Hopkin's hospital as I write, probably coming out of the recovery room about now. He will soon learn the golden rule of modern nursing care: quality of service = frequency of pain meds. I don't know how the operation went yet, but I assume it went well because the night before, in what has to be considered a sign from that big Google in the sky, Sammy found a sweet deal on another BMW.

He told me this a few hours before going to sleep. On finding this new BMW, all fear and worry left him instantly and he was completely serene about today's operation.

"This car thing has served me well," he said. "Worrying about something completely irrelevant is much healthier."

I repeated back to him his last words to me two weekends ago in NYC, where he had been for a visit and we drank a glass of scotch to the two ears (one each) that had served us well and were now being disconnected forever. We were standing on West 94th street, saying goodbye. Becky was filming from the sidewalk.

"Good luck bro" I had said.
"Good luck to you," said Sammy.
"Don't fuck up my car."
"I won't. I'll see you on the other side."
"You'll see me on the what side? What? Where?"
"The other side."
"Oh. Gotcha."
I walked away down the street
"Josh?" he called after me.
I turned. "Yeah?"
"Dude…"
"Yeah?"
"Where's a good chicken place around here?"

The Big Sambino Strides to the Plate

AP: WASHINGTON DC, AUGUST 16, 2005

The Met’s strapping young left fielder, built solid as an oak tree, has stepped up to the plate.

“It’s time,” the Sambino said. “I’ve been going and back and forth on this, but its time to s--t or get off the pot. It’s time to take my cuts.”

As opposed to his brother, rightfielder Josh Jiminez, a singles hitter known for his meticulous preparation and studious observation of tendencies, opponents and teammates (as well as for his six drug suspensions), the slugging Sambino relies on what he calls a “feel” approach to hitting.

“If it ‘feels’ right, I do it” he said.

“Does this feel right?” he was asked.

He grabbed his bat. “It’s time. Speak softly and carry a big stick, that’s all I can say. Actually, better if you speak loud and enunciate clearly, and repeat yourself on occasion, but the stick part stays the same. The big stick part. What was the question?”

Mr. Sambino has hit forty-six home runs this year, all of them to left. He threw his bat at Roger Clemens during a series in June, but claims it was an accident.

“The bat slipped,” he says, “and flew sixty feet and hit Rocket in the head. Weird.”

Sambino has gone through some prolonged slumps, marked by strings of strikeouts, most recently when he whiffed on an easy BMW pitch with the bases loaded in the bottom of the ninth against Baltimore. But he always comes out of his slumps strong. Last year, for example, stuck in a rut, he engineered an ingenious trade from his corrupt New York team mired in the basement to a rising world economic power. (No one knows what I’m talking about, but that’s ok.)

“You never know what you’ll get from him,” said his manager, Willie Randolph. “But you know it will be exciting.”

“What did Willie say about me?” Sambino asked. "I didn't know she was his daughter."

When it was time to walk to the plate, he turned back to this reporter.

“Tell Alison I’m going to hit one out for her. Tell her, I’m going to hit it out of the park. Tell her: straight to the moon, Alison.” Sambino then walked by a mirror to check his hair.

Sambino’s brother Zevro Martinez has been showing his support for Sambino by wearing an orange suit, adopting lost dogs, and buying exotic cheeses from all over the world, which he then cuts.
------
Sam’s surgery is set for Thursday morning. Good luck to him. He is, honestly, a righteous man. This ear business hasn’t been easy for either of us -- though I wouldn’t wish it on anyone, there’s no one else I’d rather go through it with. Hope all goes well.

Random thoughts as the Codeine wears off

Five days post surgery: slowly recovering from the vertigo and pain. Getting used to the sensation of fullness in the right ear. Enjoying my new ability to take two-hour naps.

CI surgery has now been done on over 100,000 people worldwide.

The most famous person with CI, Rush Limbaugh, had bilateral implants done in 2003, after he successfully melted his inner ear hair cells doing massive amounts of hillbilly heroin.

Hard to say what the success rate of CI is, especially because it’s hard to determine what “success” is. Rush is still doing his radio show with his implants, but he’s still a prick…is that success?

I would guess about 80-90 percent of implantees hear as well, or better with their CI.

After CI, my ear will be wherever the implant microphone is located. This could be in the CD player, in the next room, in the bedroom down the hall. This could be very useful for spying. Do they need deaf spies at the CIA? They seem to have plenty.

Yes it’s hot. Noodles?

The recovery room should be called the weep and moan room. Really, that’s just false advertising.

Tinnitus is noise in the ears. It is actually much more common in deaf people who wear hearing aids then in the general population. The ears of deaf people hear less sound, but are much more sensitive to that sound. So too much noise and tinnitus starts.

Tinnitus is different for every deaf person. Mine sounds like waves or gurgling water. Sam’s sounds like a voice saying “shoulda bought the bmw, shoulda bought the bmw.”

Tinnitus comes and goes, except in Sam’s case. Hopefully, his surgery on Thursday will cure it. Otherwise, he may lose his mind.

I watched sweaty white men play golf for five hours yesterday, which leads to this point: television sucks. I watched 6hrs a day last weekend just to confirm this.

CI Movie notes: it is cathartic to share one’s struggles with disability on camera. Sam, Ben and I all agree on this. Making the movie has forced us to look at our struggles in an open and honest way, which has been emotionally wrenching and growth-inducing.

K, now where are the babes?

Hearing impaired deafness is a “hidden” disability. Blindness is an obvious disability, signing deafness, still obvious, though slightly less so. But the hearing impaired deaf person is alone with his or her disability every day in situations he or she is not properly equipped for. Two thoughts on that: search deep in yourself for solace and you’ll find it there, otherwise, hit the Scotch.

Idea for a bumper sticker: deaf people do it carefully, until their hearing aids are knocked out, then they do it quietly, afterwards they say “whaaa?”

Needs work.

Notes from the campaign speech of the first deaf candidate for president: My fellow Americans, I cannot believe what I have lipread these last four years…

Fact: the Inca of South America saw deaf people as holy men, and would always consult them before the start of a battle or of an important journey.

I made that up, in fact, they usually killed deaf people to spare the expense of feeding them.

I made that last fact up as well, I have no idea what the Inca did to deaf people. But you believed the second one didn’t you?

Fact: deaf people get in less traffic accidents then hearing people. I did not make that one up. This comes from our paying closer attention to what we are doing out of necessity. Closer attention to everything we do -- need to work this into the bumper sticker.

Question: if everything can be worked out with diet and exercise, why was it ok for Tom Cruise to wear braces?

You say woozay, i say woozee

Greetings all. Its been a while. Was hard to write through the haze of tylenol-codeine. For the first days after the surgery my thoughts were pretty much restricted to -- I will sleep, I will sleep some more, and now I will sleep on my side. I also have bouts of vertigo where the world spins like an old record and I can taste everything I've ever eaten in the back of my throat. Doc Roland says this is because I have a sensitive inner ear, he has no idea why that is. Well, duh doc, you stuck a butter knife in it. Didn't they teach you that in medical school?

The hospital was fine, slept through most of it. The anesthesiologist wasn't lying when he said, this sedative is really powerful and will put you to sleep really qui --- a low point was when i was moved to the recovery room to my regular bed by two frustrated and blind ex-nascar racers. I think we hit every wall on the 6th and 12th
floors. Then i slept, woken up every six hours or so by teams of residents who wanted to see my wound and ask questions. Our conversations mainly went like this:
"How you feeling?"
"Woozy. Really dizzy. Hurts."
"Great! Just great! Wow, looks great!"

Then to my folks house in the dale, where I used my injury to wheedle for willa's world renown chicken soup. She took one look at me anddecided to head down to DC for Sam's operation, so bro, remember that when you're spooning the good soup next week. My pain = your gain.

So by now you've seen the pics -- behind that nice little scar is abionic ear! First one in the neighborhood. No idea yet how well it will work -- won't know for a few weeks more, but this could be interesting...First, this damn record has to stop spinning.

Thanks again to everyone for all the support.

Pichas, worth at least 700 words each

Alive. Sorta.

Ugh. This is gonna be brief. Thanks to everyone for the messages of support. The Doc says the surgery went great but it still feels like my ear was operated on by Mike Tyson. With his teeth. Or as he would say, "wif ma teef." Lot of pain and they wouldn't let me take the good painkillers home with me. Did manage to sleep 23 hrs straight, just missing my college record by two hours.

Take care. More later.

Good times

Aight. It’s on. Finished three hours of pre-op today, operation is set for tomorrow morning. Everyone at the hospital is really nice, though the AC there is set for 47 degrees. Everyone also is in awe of the skull-drilling ability of Dr. Roland, who's performing the surgery. The surgery is almost too easy for him, so to keep it interesting he's going to try and do mine while escaping from handcuffs underwater. The resident who will help him looks like a model so I asked him to be in the movie. "What should I do?" he asked. I said, say "Stat" a lot than seduce one of the nurses.

He likes this plan. This is going to be a great movie.

What a strange world of miracles we live in. The anestheiologist can time my nod to the minute. On the television, grown men in pajamas run around in a field in front of thousands of people. I once saw two sparrows make love under a lemon tree in India. The tinnitus in my left ear sounds like a Caribbean beach. Beneath the desk lamp, a nice cold beer. No complaints.

Stay well. See you stat.

The rules and the stakes. The salad.

Filming on the eventual oscah winner (we’re still working on the title) began yesterday afternoon as Ben, Sam and I sat down and compared smiling-and-nodding techniques. Ben introduced the three time rule: if he, for some reason, doesn’t understand what someone is saying after the third time asking, then he’s just going to pretend he does. What if she’s cute? Sam wondered. Becky asked each of us how much has deafness affected us, and we all agreed between 42 and 63 percent, more if we have a cold. Ben shared that he never takes his aids out, even on the subway or the street. I professed surprise at this – for me, that much noise would be excruciatingly painful. For the last three years, I’ve never had my aids in unless I absolutely need to. Sam’s aids usage depends on whether she’s cute.

Then we raised a proverbial glass to the memory of the sainted Adele, our audiologist/speech teacher/auxiliary mother who taught us all to hear and to speak, the key tools to living the hearing impaired person’s blessed life of borderline isolation. Wait, that sounds kinda bitter. Had my parents not found Adele, there’s no doubt all of our lives would have been extremely different. That’s probably not a good thing as we’ve all had full and interesting lives and Ben has recently become engaged to a lovely woman and Sam has recently been enslaved by one. (Bro, my blog.)

This brings up the grass is greener rule: sometimes it seems like it would be nice to sign all the time and not to do the work of listening and lip-reading. Read a blog last night by a woman named Meryl, who got implanted two years ago and in it she talks eloquently of lipreading fatigue. (I also read about a Deaf Rock Band. The link is here - I love their name. Becky, they definitely have to score the movie). I also read a few articles about a deaf former Miss America who was implanted at John Hopkins (where Sam is going for his operation) a few years back. Both of them say the surgery is the easy part.

Getting a hole drilled in your skill is the easy part? Dang.

Two more days till surgery for me, ten for Sam, who had his operation postponed for a week. Feeling waves of pre-surgery jitters and it’s too hot to drink Scotch. I try and keep perspective by remembering my long-term prognosis. If the implant works great -- death. And if it fails – also death. So either way, I got that going for me. Though I guess if you do make enough money you could have your head cut off and stored upside down in a freezer in Phoenix. Then you could be brought back to life 200 years from now, into a cyborg body made from cochlear, muscular, and penile implants. But what if GW Bush is brought back to life at the same time? No one thinks these things through.

Pre-op is tomorrow at one. Mets have won three straight. They make really good salmon salad at Zabar’s.

Questions, Answers, Oscars

Hey. Man it’s hot.

Michelle has a good question – how long before we know if the implant works? I’ve asked this of many doctors, audiologists, and cochlear implant wearers/cyborgs and they all have the same answer – we dunno.

The implant is a gamble. Next week, when they put it into the ear they’ll test it to make sure that the hardware is working, but they can’t test whether the hardware is compatible with my brain until three weeks later. Those three weeks are for recovering from the surgery. Then the machine is turned on and that first week after being turned on is crucial. The biggest side effect of implants is headaches and vertigo. I already got those, so there’s a chance I might keep getting them. Which means I would not be able to use the implant or a hearing aid in that ear. In which case I will be signing a lot more and saying “what” and then nodding.

Hopefully the headaches stop. I think they should because my hearing will be going from a vibrational system to an electrical stimulation system (sorta like my sex life. Nope, no idea what that means.) But even if the headaches are gone, we’re not out of the woods. It will still take months of training and reprogramming to learn how to hear again and it’s hard to predict how well that process will go. Generally, within two-three months of the implant being turned on, you have a good idea of how well it works. That puts us in November.

If all goes well with no complications, Sam and I should hear better then we’ve ever had. The microphone in the implant will pick up more sounds then our hearing aid ever could. The question is how well our brains learn to understand those sounds. Again, if we can’t understand them, we’ll just nod like we do, no worries.

Actually, better not to let us do that. Stop us if we are.

So, in answer to Michelle’s question – not for a couple months will we know if it’s working. But that’s what this blog is for.

Wanted to quickly mention that my cousin, the lovely and talented Rebecca Haimowitz has started filming a documentary around the procedure Sam and I are having, and around her brother Ben’s hearing impairment. The movie will use the surgery and rehab as a jumping off point to discuss how our families have dealt with (or not dealt with) the challenges of three deaf individuals. This could be really, really interesting. We’ve done some filming already. Dante suggested the title “I See Deaf People” which is why it bears repeating that he sucks at tennis.

The title needs work, but I’m excited about the film. Can you say, Oscah? I can.

Welcome

Welcome to the first installment of the Cochlear Implant Blog, also known as the Cochbla. Many people have asked for updates on the implant process so I thought I'd try this. I will be updating this periodically to let you know how things are going, to let you know what it feels like to have a hole drilled in my head and a wire implanted in my ear; and what it feels like to hear through a computer sticking out of my skull. In case you were wondering about that. If not, www.nytimes.com is a good site, it's got news and stuff.

It is Tminus 6 days to surgery for me, minus 7 for Sam. Both of us are a bit nervous, but Sam has good perspective and is more upset that he missed out on a sweet deal to buy a classic BMW convertible and that the Mets can't string together a winning streak. My parents seem ok with the impending operations.

I've been considering an implant seriously for about 8 months now. I've had non-stop headaches for more than two years, which refused to go away even after I stopped working at the law firm. After being treated for concussions and migraines to no effect, I found out that it was my hearing aids that were causing the headaches. Thirty years of amplified sound wore out the membranes that hold the fluid in the inner ear. These membranes now move too much, which makes the fluid in the ear move to much which causes headaches similar to what you get from motion sickness.

Sam's situation is pretty similar. I will be having my right ear operated on, Sam, his left. Which ear is operated on is determined by which ear is worse off. The worse ear is chosen because the surgery is irreversible. Once donce, tht ear loses all its residual hearing for good. Might not seem like a big deal as the ear is already deaf, but it actually is a pretty big change -- the ear operated on can no longer pick up any vibrations whatsoever. It's pretty much just for looks then so I might get an earing or a small tattoo of a guy fishing for mackerel.

I worked closely with Dr. Andrew Fishman at NYU trying to get to the root of my ear problems. When we figured out what it was and set the date for the surgery, he promptly left for India for a year to do neurosurgery at a free hospital for street children, the dick. Dr. John Thomas Roland (he also owns a steakhouse) will now do my operation and he has probably done as many of these operations as anyone in the world. As he put it: "more than 750 and I haven't sliced through any facial nerves yet." I don't think I've put on a band-aid that many times. Many days he does three operations which leads to the obvious question -- who are all these people?

Leads to another issue -- all these cochlear implants are rapidly, massively, and irreversibly changing the deaf (signing) community. Wait, that's someone else's blog.

Nah, I'll get to that sometime.

Just want to quickly mention that this Saturday is a wedding party for my great friend Dante Paradiso. Dante, you may not know -- and I say this in absolute seriousness -- is a genuine hero. He, more than anyone (and he will deny this, but I have seen the classified state department evidence), is responsible for ending that terrible civil war in Liberia a few years ago. I am honored to be his friend and promise not to bring up his abysmal record in sporting competitions against yours truly at the party. One of my fondest memories of being a forest ranger with Dante is watching him scream in agony and storm off into the redwood forest after losing a third set tiebreaker in a tennis match late at night on the Northern Pacific Coast. Good times. D is the man.

If you have any specific questions, please drop a line any time. Otherwise, check back in a couple days. Thanks to all of you for your great support during this interesting time.