A Map and Shots for My First Road Trip with an Implant

I’m writing this from the Ronald Reagan airport in DC.  I just finished a trip to work on one of the grant projects for the Taishoff Center at Syracuse University, an amazing project forming a consortium of disability services providers working at Historically Black Colleges and Universities (www.hbcudisabilityconsortium.org).  This is my first trip since I got my cochlear implant, so it’s been interesting to see how it goes.

Last Thursday, I had another “mapping” session with my audiologist, where we tweak the implant to keep improving how it functions (and how I function with it).  I had been nervous before the appointment because we were going to be programming the three implant channels.  My audiologist told me to figure out which ones might be best for music, for the phone, and for everyday usage.  If I wanted to, we could program one of the channels for situations like meetings, noisy situations, or classrooms where I’m teaching.  For two weeks between appointments, I tried to figure out the best channel for each of these, but channels one and two sounded the same.  And channel three was my preferred channel for everything.  I was a musician in my previous life as a hearing person, so I felt like I should be able to figure out which channel would be good for music, but on channel three I was getting more of the singer’s voice and treble, and on channel two I was getting more of the layers of music, but less of the singers.  So which is better?  I had no idea what to ask my audiologist to do.  I thought about children getting cochlear implants.  How the heck do they (or their parents) decide which channel should be for classrooms?  Which one for everyday?  Which one for loud settings?  Or music?  Or…?   When I shared my angst with a friend, she suggested I ask for Showtime, HBO, and maybe one basic cable channel.  Ha ha.  Disability humor.

Well all my worrying was for naught.  Turns out that programming channels for specific environments is just an easy way for audiologists to get a grip on what people want their implants to do.  Another way to program it is by playing around with the functions built into the implant itself.  It’s like having a 4×4 off-road vehicle: you can decide what to do with its features based on the landscape (“Oh, I’m off-road in the mud, so let’s try this…”), or you can decide what to try based on what’s built into it (“Hey, let’s drive somewhere and try this positive traction thing…”).

So we programmed channel one to be the T-coil.  Most phones have a special telecoil built into the phone (although not my iPhone – shame on you, Apple).  So when I turn on channel one, I pick up what’s on the phone and no longer get sound from the environment around me.  Honestly, I haven’t tried this because I can’t find a phone that works, but I haven’t played around enough with it yet. Some auditoriums are equipped with a loop system, where they wire the whole place so whatever is going into microphones on stage is immediately bounced out to audience members who have turned on the t-switches in their hearing aids or implants.  Also haven’t tried this, since I have no idea where loop systems exist in Syracuse.

Picture of guy in chair listening to Maxell cassettes, which literally are blowing his hair back

From http://www.flickr.com/photos/26586285@N07/3973009220/

But channel two is now super cool and definitely my favorite, with the cochlear implant version of hi-def stereo (like the Maxell ad with Blow-Away Guy shown above).  Turns out there’s a second microphone on my implant, although I am not 100% sure of where it is (and for some reason Advanced Bionics literature doesn’t explain this well).  I have included a picture here that shows where I *think* it is in relation to the volume control, channel switches, etc.

Picture of cochlear implant with labels for magnet, microphones, volume control, channels, and battery

The cool thing about channel two is that I now get layers of sound like hearing people – so I can hear someone near me with the first microphone that hangs over my ear, but the omnidirectional smaller one on the back of the implant picks up environmental sounds, as well.  So for some reason everything sounds much clearer and more natural.  When the audiologist turned it on, my eyes opened wide and I felt like my brain and I both went “WHOAAAAAAA!  What is THAT?!” Some of the sounds that made my “Top 10 Worst Sounds” list no longer bother me if I’m using channel two now.

Channel three stayed the same, with sound only going in the microphone that hangs over my ear ( it’s on the tip of the piece that hooks over my ear – in the far left in the picture above). I use that when it’s a noisier environment, and layered sound isn’t a good idea.

I wanted to blog right away about the appointment, but I left feeling kind of mentally overwhelmed – it reminded me of how I felt as a high school exchange student landing in Japan, where my senses were on overload.

For example, after my mapping appointment on Thursday, I stepped into the parking lot with channel two on.  I heard a weird sound near my car.  Took me a few seconds to realize it wasn’t the wind – it was the leaves of the nearby tree blowing in the wind!  I had to check to be sure that’s what it was.  And then I realized I was in the parking lot with my head in a tree, moving leaves with my hands.  I’m lucky I wasn’t gently escorted by security to a totally different kind of clinic.

After extricating myself from the tree, got in the car and tried out the T-coil on channel one, but it didn’t work with my iPhone, so I tried channel two, knowing the microphone over my ear would pick up the phone while the other microphone continued getting environmental sounds.  First I called work, because I knew nobody would answer – I could hear the ringing and the voice mail pick up.  Hm.  Interesting.  So then I called home.  My parents are visiting, and I heard the phone ring, my mom pick up (although I thought it was my dad), and my mom saying “Sounds good! Bye!” after I told her I was heading home.  What a bizarre experience.  I tried it again later with my partner, Tracy, but all I heard was the weird robot sound I usually hear with women’s voices.  So it’s still hit-or-miss.

Traveling with this new set-up is great.  I noticed it was much easier lip-reading security, people at the ticket counter, folks manning counters when I buy food, etc.  I didn’t have to write with anyone back and forth to communicate.  So the implant is now exactly where I wanted it – I am back to having some residual hearing that can help me lip-read.  But I was also surprised by the fact I could hear the pilot making announcements on the plane, I could tell when the cab driver was trying to talk to me (WHY do they do that after I tell them I’m deaf???), and I heard someone knock on the door of my hotel room yesterday.  I was also surprised how little the implant helps me with people who have accents – that’s still too difficult.

Another interesting tidbit not related to sound – I am still not sure what to do about airport security.  My Advanced Bionics implant literature says it’s no problem for me to go through the metal detectors with the implant – I just have to be really careful the implant is not in any carry-on or checked luggage, because the x-rays will destroy the processor.  Nevertheless, TSA personnel in Syracuse and DC both suggested I get a pat-down search instead of even going through the metal detector.  That’s fine with me.  I’d rather be safe than sorry.  Only bummer is that I just got my flu shot and a vaccine for meningitis (people with implants are at higher risk of meningitis, and I work at a college, which is like a large-scale petri dish for meningitis).  My arm still has a big purplish red bruise, so being patted down was a real bummer.

But the map and the shots got me through my first road trip.  That said, I’m sitting here in the airport wearing my implant even though the battery is dead.  There’s a new battery in my bag, but I’m tired and the airport is loud, and I don’t want to be hearing anything right now.  The silence is just lovely.  It reminds me of Amy Mullins, who spoke at a TED conference about being able to change her height by changing her prosthetic legs  – some of her friends think this isn’t fair.  Well, maybe it’s not fair for me to change from being sort of deaf to completely deaf as I choose, but I’m not going to apologize for it.  You could say that it’s my journey, literally and figuratively, so I  choose how to get there.

P.S.  Thanks for all the advice about adding pictures – you’ll notice I’m giving it a try!  And I’ve added a whole page with more photos (so now I have my home page, my photo page, and my bio page on this blog).

 

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Top 10 List for Best and Worst Sounds with a Cochlear Implant

Keeping in mind that nothing sounds like hearing people’s hearing, and everything is still squeaky and robotic, I present “Wendy’s Top 10 Best and Worst Sounds with a Cochlear Implant.”

WORST SOUNDS:

10. Odd little noises from my computer.  (Who knew it was so noisy?  Good lord, the thing is beeping every two seconds at me…but we’ve always had a love/hate relationship.)

9. Cordless drills.  (The backhoe inventors need to talk to the drill manufacturers about improving the sounds of these tools.)

8. My keys.  (I have a big fat keyring and every time I pick them up I think “Aigh!  My tinnutus is back!  Oh wait!  It’s just my keys!”)

7. Coughs (sounds like something metal banging and slightly hollow, combined with robot sound…very strange and a little disturbing in a “What the hell did I just cough up?” sort of way).

6. Almost all popular music, especially anything sung by women (see #3 on this worst sounds list) – BUT today I asked my interpreter to interpret an uncaptioned YouTube video and she commented on the pretty Indian music at the beginning.  Since this sounded like a nursery rhyme childrens’ song being plunked out on a metal xylophone, I am perhaps not the best judge of music.

5. Toilets flushing. (Imagine a hurricane/tornado sound ala’ Wizard of Oz in the bathroom every time you flush.  I’m going to get really dehydrated trying to avoid the bathroom.  And FYI, several people have asked me, and no…I still cannot hear myself pee unless it’s really really really quiet and I focus…but why would I focus on that?)

4.  Water running. (I have to leave the room while running water for a bath because it’s like Niagra Falls in there, but showers are ok.)

3.  Women talking (Guys and kids are tolerable, but unfortunately, most female voices sound like high-pitched android robot monkeys with lisps holding a microphone too close to their face so it makes squeally feedback.  Really.  Could I make this stuff up?  And remember, too, what a bummer this is if you are a woman listening to your own voice…or your lesbian wife’s voice…I firmly believe God doesn’t hate lesbians, but cochlear implant inventors might.)

2. Paper being crunched up into a ball.  Noisy. Rude. Excessively loud crackling. Ugh.

1. The dinging of the car’s turn signal  – a clinking high-pitched nails-on-chalkboard sound so intolerable I take off my implant to drive (but it’s only bad on implant channels 1 and 2 – on channel 3, they make my “best sounds” list below).

 

BEST SOUNDS:

10. Flipping through pages of a book (a gentle sweet sound).

9. Dinging noise of the car’s turn signal (but only on my implant’s channel #3 – see above).

8. Scratching my head (for some reason this is a remarkably pleasant sound and FYI, I had no idea how often I do this – I don’t even have dandruff).

7. Sounds I didn’t know existed that I think are funny (like the fact that the university parking garage entry thing beeps when I swipe my entry pass – I chuckle every morning to think hearing people need to hear beeps – the gate opening isn’t enough for you folks to move your car forward into the garage?)

6. Any sound-based games with my five-year old, especially when he claps out rhythms and I try to hear them (this isn’t higher on the list because it gets old after a million and a half times playing the game).

5. “O Canada” recorded in 1908  (A friend with an implant clued me in that this is a good song for people with implants and yes, it is fun…and yes, it’s captioned…and yes, it’s hysterically funny watching how many hearing people come into my office to sing along when I play this on my computer.)

4. British people talking (Americans still sound terrible – especially women, as noted above – but Brits’ accent for some reason just cracks me up, adding a crispness to gobblygook that is TOO funny – I’m laughing just thinking about it.)

3. People knocking on my office door (annoying sound, but very useful).

2. Leaves crunching (sounds like what I remember from 20 years ago, and I LOVED that sound).

1. ALL TIME FAVORITE: Backhoes rolling back and forth on piles of dirt (see previous post on this blog – it’s a lovely sound that reminds me of the ocean and nothing has beaten it yet).

 

 

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I Want to Hear Like a Deaf Person (A Lengthy Clarification)

As evidenced by many comments and off-line reactions to my blog, hearing people automatically assume all Deaf people want to hear, of course.  In fact, hearing people often cry with joy to think I am hearing anything with my implant.  But I think a clarification may be helpful, explaining why I got an implant and what I want to do with it.  After all, most hearing people aren’t understanding what I’m trying to do.

I was born hearing and was way way way hearing.  Like 150% hearing.  In fact, I was so hearing that I wanted to make a career out of it as a musician.  If you look at comments by my old high school peers, you’ll see many of them remember me for all the piano playing I did – accompanying shows, performing, etc.  I even won music scholarships to college.  So when I realized I was becoming hard-of-hearing (in 8th grade, after years of faking and lying my way through hearing tests), it was difficult.  And when I realized I was becoming deaf (in my junior year of high school, just as college acceptance letters were arriving), it was a tragedy of Greek proportions.  It’s really hard to explain to people – just remember that many musicians say they would rather be dead than lose their hearing.

By the time I was a junior in college, I was not only deaf according to hearing tests, but deaf in terms of being able to talk with others, hear on the phone, attend class, etc.

When I started learning American Sign Language (ASL), I thought it was a joke.  I figured it would be an elaborate sort of mime that was pretty useless in the “real world.”  Instead it was like the Matrix, where I took a pill (or in this case, an ASL course), and discovered a parallel world that was vibrant and a language that rivaled English in its complexity.  All the doors that were shut opened up again.  I went back to college, got a job, learned how to use a TTY to make phone calls (now I use a much cooler Videophone), and started becoming involved in the Deaf world and all its history, arts, traditions, and so on (if you have Netflix, check out the movie “Through Deaf Eyes” to learn more).

Learning ASL also meant I got involved in the Disabled Student Cultural Center (the DSCC) at the University of Minnesota.  I started learning about the medical model and social model of disability that exist in society.  The medical model meant I was broken and needed to be fixed up or cured.  The social model meant society was set up for nondisabled people and they were all jerks for thinking I was stupid or incompetent if I was deaf.  This resonated with what Deaf people were teaching me about Deaf culture (notice the capital “D”) vs. deafness (lowercase “d”) as a medical condition.  Most Deaf people loved ASL and were proud to be Deaf.  I was starting to feel proud, too. The DSCC  introduced me to many people with different disabilities who felt  the same way, and my work at the DSCC convinced me we need to celebrate how disabled people add diversity to this world.  No matter how much medical technology advances, we will always have people with disabilities, and most ideas about disability are rooted in fear, shame, and misconceptions about what “disability” means.

So given all this Deaf pride and Deaf culture and community stuff, cochlear implants have a troubled history with Deaf people.  At first it was seen as a form of medical genocide, and a final attempt of doctors and audiologists to wipe out deafness once and for all.  Doctors didn’t help this by touting implants as a “cure” for deafness.

Most Deaf people I know are fine with adults getting them, shrugging with an attitude of “If you want to go through all that for no good reason – that’s up to you.”  Children with implants is a whole different story.  Most deaf children have hearing parents who have never met a Deaf person or learned any ASL.  Most of these parents want their children to hear and speak, and doctors are still insisting implants are a cure of sorts.  So Deaf people worry that children are getting surgery due to a lack of information for parents, and then the children are being encouraged to deny their deafness.  They are all still deaf.  So Deaf people worry that deaf children will grow up thinking there is something wrong with them, when all of us would tell them how beautiful they are and how they are joining generations of amazing Deaf people.

Doctors have wanted me to get an implant since I was 18 years old.  I resisted because I knew the technology was pretty basic and because I knew there were some serious side effects (like not being able to get an MRI, an increased risk of meningitis, all the risks of general anesthesia).  I also didn’t want one.  I liked being Deaf.  I was doing well.  I was learning and pursuing my education.  I was content.  Why bother?

In August, 2011, I worked with a grad student named Alex Umstead.  He helped me plan a national conference for students with disabilities – “Disabled and Proud.”  Then a few months later, I realized I couldn’t lip-read Alex.  My residual hearing was continuing to fade, and the quality of the sound was so bad that I couldn’t lipread familiar people in 1:1 situations.  Then my wife Tracy (who is an ASL interpreter) interpreted a conference about cochlear implants and came home impressed with the improvements in implant technology.  So we started talking about it.  Privately.  By Christmas time last year, we had pretty much decided to move forward.  We talked to a very dear Deaf friend who got an implant.  And we talked to my brother, who is always able to think calmly and coherently when facing complicated questions like “Should I get a cochlear implant?”.  Tracy and I both started warming up to the idea of me having an implant.

But here’s the kicker – I don’t want to be hearing.  That’s not even reasonable.  I will never be hearing.  When I take off my external processor, I’m deaf.  When my implant is on, I will hear noise, and hopefully that will help me lipread and get environmental cues.  I would love to be able to lipread Alex and others in a 1:1 situation.  But honestly, music will never sound the same again.  Even if I talk on the phone someday, I will always be functioning as a hard-of-hearing person who misses a lot of information (and would probably rather just use my good old Videophone).  But this isn’t sad for me – this is just a fact.  I do sometimes miss music dearly, but the beeps and sounds of my implant can’t give me back music like a hearing person would hear it.  I mourned for music a long time ago – it’s like an old friend who died, and sometimes I see glimpses of that friend in others, but that particular friend is gone.  So my implant might give me a ghost or shadow of music, rhythm, tone, loudness, etc. but I know it’s not the same and never will be.

So I’m hoping people understand that I’m trying to learn how to hear like a Deaf person.  I am trying to embrace what the implant is giving me and figure out how to use it.  It’s just a tool, like a hearing aid, e-text for people with dyslexia, braille, or a wheelchair.  Deaf people in Scandinavian countries think of implants this way, and it makes sense to me.  I get the tool and figure out how to use it in a way that meets my needs.  This involves a lot of experimentation as I figure out when I can rely on the implant, when I need to have interpreters, when I want sound from the implant combined with ASL, when I can take of the processor and enjoy the silence and ASL, and so on.  How I use it will be unique and suited to me alone, and will not be the same for any other person.  Even if I end up being one of the success stories who can suddenly understand 90 percent of spoken speech, I will still be Deaf and deaf.

So it’s awkward when hearing people get too excited about me being able to hear.  Please understand that the decision to do this was not an attempt to be hearing, and my hearing will never be like a hearing person’s hearing.  I will be experiencing a Deaf person’s hearing.  And that’s just fine, even if I still haven’t figured out exactly what that means.  If people get too enthusiastic about me being able to hear, then it’s like my whole experience in the amazing Deaf community has just been minimized or dismissed out of hand.  If you don’t know ASL, you don’t know anything about being Deaf.  And if you’ve never had a quiet world, you’re missing out – in my opinion, hearing people’s world is too full of sound, and hearing people are way too hung up on needing to talk to communicate. And I speak with some authority because I’ve been hearing, hard-of-hearing, deaf, Deaf, and now Deaf with an implant.  I’ve covered a lot of ground and now I’m on another part of the journey.  So wish me luck as I figure out how to hear like a Deaf person.

 

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Now I’m Not Getting Any Work Done…

This blogging thing is fun, but very distracting.  Fun to suddenly have an inbox full of old high school friends and Earlham professors wondering where the heck I’ve been for 20 years.

In response to my post, my colleague Steve Kuusisto wrote a bit on his blog about his experience deciding to have surgery to become less blind…err…more sighted…umm…more visually impaired?  Anyway, he explains it himself in his lovely writing voice at http://www.planet-of-the-blind.com/2012/10/disability-and-the-function-disjunction-department.html.  Thanks for the shout out, Steve!  Happy to return the favor.

Now I’m going to get work done.  Really.

 

 

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Week 3 – The Implant is Actually Starting to Work (and a Cool Link)

The last couple of weeks have been hell.  I had constant ringing and squealing in my ears that was almost unbearable.  I hardly slept, was constantly distracted at work, and was short-tempered almost all the time.  Last Thursday I ended up in the E.R. with excruciating ear pain, just to add insult to injury (it’s better now – was partly from my ear still recovering from surgery and partly from the way I hold tension in my jaw when I’m stressed, believe it or not).

This week I went into the audiologist for my first tune up, or “mapping” after having the implant turned on.  I got a standard hearing test, but could barely pick out the tones behind the constant barrage of noise in my ear.  After the test, the audiologist surprised me by saying he thought I needed to turn up the volume.  I actually cringed at the thought…I had already tried that during the first week, and it was excruciating.  So I braced myself (literally gripping the table and closing my eyes tightly) and he cranked up the volume.

Surprise! The tinnitus practically vanished!  And I could hear when he was talking!

I was shocked.  After the appointment, the interpreter and I were saying how counter-intuitive it was to make something loud and annoying even louder…and having that fix the problem.  It’s like telling people with ADHD to try stimulants, or suggesting people with arthritis get up and move more. The audiologist said some deaf people’s brains and ears actually struggle with quieter sounds, and do better with more noise and stimulation.  He said this happens sometimes – it’s just a quirky thing.

But who cares about the reasons it worked?  It seemed to do the trick. Now I’m at the point I thought I’d be on the first day of activation.  I can pick out when people are talking and hear environmental noises.  Of course, people sound like goofy high-pitched robots speaking gibberish, and noises aren’t recognizable.  But that should improve over time.  The tinnitus is still there when I take off my processor, but it’s very faint and tolerable.  When I have a lot of noise in my ear now, I know it’s because it’s noisy!

My five-year old son Zack is having a lot of fun helping me identify sounds, and I am constantly amused by what my ear is hearing, because I still remember what most sounds are supposed to sound like.  But there have been some admittedly cool moments, like when Zack was in the backseat with my iPhone and I suddenly heard a lot of noise – he told me I was hearing a movie he made with my iPhone!  I also was driving along at one point and clearly heard a “Mama” sound from the backseat when he was trying to get my attention (because he had noticed my gas gauge was on low).  Ironically, Zack’s voice is easier to hear than Tracy’s or most adults, so he’s taking his self-imposed teaching/auditory training duties quite seriously, and using a fun combination of talking and signing with me.

And yesterday I heard one of the most beautiful sounds I have heard since I became deaf – a soothing rhythmic sound like waves of the ocean.  It was so beautiful I just stopped and listened for a while.  It was a backhoe moving dirt at an SU construction site, going back and forth, and back and forth. 🙂  During a break between meetings, I asked my sign language interpreter Amy if she wanted to go listen to the backhoe for a while with me to relax, but she politely declined, believe it or not.  It’s hysterical to know how awful that sounds to hearing people, and then to think about me standing there with my iced tea from Starbucks, sort of rocking and enjoying the noise.  My co-worker suggested that some of our autistic students might be willing to go with me if I can’t find any hearing people to tag along – and she was serious.  I love my job.

I’m now feeling more confident that the implant will do what it’s supposed to do, and will support my lip-reading at some point.  I also like the idea of hearing more environmental noises.  And I’m learning how to work with an interpreter while getting some auditory input.  So I’m finding my groove.  In two weeks, I go back to the audiologist and he will adjust the three channels of the implant for three settings: the phone, everyday conversation and work, and for music.  My homework until then is to get a bunch of children’s books on CD and to listen to them over and over.  My brain is like a child’s – it needs to hear simple words first with lots of repetition, and then it will be able to learn more complicated speech.  I’m also supposed to continue turning up the volume as much as possible – the louder the better. Still seems weird that I would even want to do that!

I think we’re through the worst now, and I’m curious about what the next few months will bring.  I’m not gonna lie – the last two weeks have been tough on me, my wife Tracy, and my kid.  We’re all grateful for family, friends, and co-workers who have offered support.

On a final note, I just so happened to find a very cool video by a woman in the UK who is a lot like me – she uses whatever is at her disposal for communication and enjoys skipping around between Deaf/hearing worlds and mutations of both:
http://www.youtube.com/watch?feature=player_detailpage&v=icPsm9RnO2E
It looks like the video might simulate implant sounds for hearing people, too.  She’s a physiologist, so there’s also some technical info about the implant.  It’s also captioned!

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Why a Blog? Because There Aren’t Many Deaf Disability Studies Professors with Cochlear Implants

I’m a professor and I often have my students blog for courses, as a way of learning about technology they could use with their students, but also as a way to share their reflections about readings with each other instead of with me and my teaching assistants.  Makes more sense to know what peers think of your work, instead of just what a professor thinks of it.  When I read blogs, I also often think of Earlham, a Quaker college I attended.  At Earlham there was a public opinion board in the student center, but you couldn’t leave an opinion unless you also left your full name – no anonymous posting allowed!  It forced people to think about what they would say and to claim their opinions as their own.  But it also helped make the personal political when you knew who was saying something.

So I’m a disability studies professor who teaches about all different perspectives on disability and how disability doesn’t have to be a bad thing, how society affects the way people view disability, disability identity politics, how we can be more inclusive in schools and colleges, etc.  And I run a research center that’s trying to apply all this to higher ed.  I also happen to be Deaf.  And a lesbian.  Oh, and I have asthma that is now at the point where I think we can stick a “disability” label on it.  So I have grown to like the way my personal, political, academic, and work stuff all mixes together in a lovely messy way.

But this fall I also got a cochlear implant.  (Cue suspenseful and slightly ominous music and thunder crashing.)  None of my students knew quite what to say, because cochlear implants are supposed to mean deafness is a disability, a problem, and something to be fixed and eliminated, and implants are a form of cultural genocide trying to wipe sign language users off the face of the earth.  So they had a hard time knowing whether to say “Congratulations” to me when they heard the news.

Since I got the implant many students and faculty said I should start blogging about my experiences.  Today the Dean also suggested this.  I like my boss and was surprised he said this.  If he thinks it’s a good idea, maybe I should give it a try.

No promises, here, folks.  I have a lot of work on my desk, so this blog may languish in cyberspace.  But it’s a nice way to keep family, friends, students, and co-workers up to speed on what’s happening.  I’m just letting others listen in (pun intended).

Enjoy, and welcome to my world for a bit.

 

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