Saturday, August 31, 2013

Surviving. Sort of.

The first full week of school came to a close yesterday. I. Am. Exhausted.

It has been 18 years since I taught first grade. I had forgotten how utterly exhausting first graders can be. I have to teach them EVERYTHING. They don't know how to "do school." They can't do anything on their own. Except talk. And talk they did. Excessively and loudly.

Hearing-wise, I was more prepared for teaching a classroom full of excitable little ones than last year when I was reeling from the hearing loss that had occurred two days before school started. Being more prepared mentally (and having a set of good, if not perfect hearing aids) made the week more bearable than last year, but not without problems. I can hear my students with my hearing aids, almost too well at times, and had to continually tell them to remember to use their indoor voices. First graders are loud, and they don't have the typical filters that older students have that help them self-monitor their volume. The problem that continues to plague me is hearing them well enough to understand what they are saying -- which I don't do well at all.

In regards to my hearing loss, the good thing about having first graders is that they tell stories. Lots and lots and lots of stories. Most aren't really important for me to know, thank goodness. They just want acknowledgement. So nodding and smiling and saying, "Thank you for sharing that with me" is just fine for the majority of the time I can't make heads nor tails out of what they are saying to me.

I've noticed that I've changed the way I teach. I talk a lot more now than before, which is a super powerful feat given that I always talked a lot before I lost my hearing. It makes perfect sense, and I've read that it's a phenomena that occurs quite often in people with hearing loss. If I talk more, I don't have to listen as much, and the focus is off my deafness. Talking is easy. Hearing is hard. Listening is harder.

My new classroom is carpeted and quiet, and with the door closed, it is possible to be blissfully unaware of anything that happens outside my classroom walls. An unexpected fire drill that occurred mid week threw me for a loop. I didn't hear it. The alarms are in the hallways. Thankfully, there was a lull in the noisy din of children preparing for dismissal, and one student asked if that was the fire alarm. I shushed the class and sure enough, it was. (We found out later that a naughty kindergartener had pulled the alarm.) My principal offered to have a strobe installed inside my classroom and my team leader said she would be my fire alarm buddy from now on. "I won't let you burn!" she said. In my old school, I was told I was being demanding when I asked for help during fire drills.

And my school district's audiologist brought a desktop listening device to me. I can set the microphone in the middle of my reading table to amplify the voices of the students in my small groups above the children at their desks. The small, portable speaker can be set on the bookcase behind me so that my hearing aids can pick up the sound better. The system is wireless, so I can have my principal clip the microphone on his shirt during faculty meetings so I can hear him better, too. Technology is a wonderful thing.

I am surviving. Sort of. There are things that I will never regain. I will have to adapt and change and ask for help. But I have found myself in a new school with wonderful people who want me to be successful -- a place so different from the school I left. I am happy again. And that is making all the difference in the world.

Wednesday, August 21, 2013

I Have a Surgery Date!

Cochlear Nucleus 6



My road to cochlear implant accelerated forward today. I received notice that my CT scan was normal and we are ready to schedule the surgery. It will be November 20.

This timeline makes it possible for me to have the latest technology from Cochlear America -- the state-of-the-art Nucleus 6 (N6) processor -- which recently received FDA approval in the US. The company plans to begin marketing the N6 on September 30. My audiologist will receive and train on the new "mapping" software in October. The nurse also said that my doctor will be taking a vacation sometime in October. Having my surgery in November when he is rested and refreshed seemed a very good idea to me! I can also piggyback my recovery time with a school holiday and save on using sick days.

I'm both excited and nervous. Excited that I will be able to "hear" out of my deaf ear and hopefully improve my speech recognition. Nervous that it's a lot of rehabilitation and hard work. And worried that I won't have good success with it. I'm a worry wart.

The diagnosing ENT doctor (the same one who referred me to my otologist) offered me a piece of really good advice. "It (your ear) is deaf. You can't hear anything out of it anyway. It can't get any worse. But, a cochlear implant could make living better." He said he'd do it in a minute if his ear was deaf. Along with my otologist and audiologist, all three of my hearing experts have recommended an implant for me. I have to trust their expertise and experience.

So, here I go. I ordered a black one.

Saturday, August 17, 2013

Who's Amanda?

Learning to cope with my hearing loss has been grueling and depressing, I admit. But on occasion, it has provided moments that remind me not to take myself so seriously. Case in point:

My kitchen and family room are one great room, divided by a breakfast bar. My husband was chopping vegetables recently at the breakfast bar behind me -- I was in the family room where I sat watching television. (Now, he knows I'm not so good at understanding speech when there's a lot of background noise, like TV -- and knives -- especially when the speaker is behind me, but he persists on talking to me in that context quite a lot. It's hard to break a 30-year habit.)

"Is Amanda still mad at you?" he asked.
"Who's Amanda?" I asked back.
"What're you talking about?" he replied. "Amanda who?"
"That's what I asked. Who's Amanda and why would she be mad at me?"
"Amanda?! I wanted to know if you wanted a banana and a salad!" he laughed.

Oh. 

Usually, I'm pretty good at filling in meaning even when I don't hear or understand every spoken word.  But I must say, sometimes even I'm amused at my interpretation.

"He let his PANTS down?! What did you say?" I ask. *erupting laughter from my husband* He's laughing so hard he can't even remember what he was talking about, so I never find out what he really said.

Those of us with moderate to profound hearing loss have not only lost our hearing, we have also lost speech understanding. Our hearing aids amplify sounds, but they amplify all sounds equally. In the presence of background noise, determining words and understanding them becomes an exhausting and tedious undertaking. We can HEAR voices. It's the words that escape us.

This chart shows degrees of hearing loss, and the "speech banana" I have come to know so well. At 55 - 70 dB loss in my better ear, you can clearly see that nearly all speech evades me. 

My audie (this is what we call our audiologists) is wonderfully sympathetic and has adjusted my hearing aids a lot to try to compensate for background noise, bringing forward voice frequencies, and fine tuning my hearing aids for my needs. It helps some, but she reminds me that hearing aids can only do so much, and that speech recognition will always be difficult for me. On the up side, I'm getting much better at speech reading. That's why I prefer face-to-face conversations. I can look at your mouth. It's a little awkward, and I even had someone ask if she had spinach stuck in her teeth! When I explained that I use speech reading to help me hear better, she laughed off her embarrassment. But in the real world, face-to-face doesn't occur as often as I'd like, so I continue to err and ask people to repeat themselves. And sometimes I laugh, because what I think I hear can be really, really funny.

My husband recognizes my struggle, and we giggle about the times "I'm not part of this conversation anymore, am I?", but the frustration is real and often embarrassing.

I still don't know who Amanda is. But whatever I did to make her mad -- I'm sorry. ;)

Tuesday, August 13, 2013

Happy Anniversary to Me

It's been a year since I lost my hearing.

August 14, 2012. Just before 9 am.

One minute I was leading a group of teachers in a training for the common core curriculum. The next, the hearing in my left ear was gone. Just like that. No warning. No cause. Just gone.

I thought my ears had stopped up - a common side effect of my chronic sinus infections. Nope. It was far worse than that.

"Your ears are not 'stopped up'. You have sudden sensorineural hearing loss. Your left ear is profoundly deaf, and your right ear has sustained moderate-severe loss. They are completely normal except they cannot hear, " my ENT doctor told me as I sat speechless in that chair. "It is permanent. Your hearing will not come back." I'll never forget those words.

It's been a year of regrets and what-ifs and why me's -- a year of finding new ways to do things I had taken for granted; tears of deep anguish and determination; utter defeat and the stark realization that my life has forever changed. It's been a year of discovering how strong I can be through adversity...and how weak.

I am a new person, different than before. Stronger in many ways, I think, and yet I am weak. I still cry when that fragility surfaces unexpectedly and I find myself lost, frustrated, and confused. I'm learning not to be so vulnerable to what the hearing world throws at me. I am deaf in one ear. I am hard-of-hearing in the other. I am hearing-impaired. I can acknowledge that, if not accept it; a resignation that what I have lost will never be found again.

But I am not powerless. I will find my way in this, as I have found my way before. I continue to trod into unfamiliar territory.

I'm making sense of my hearing loss and I'm seeking peace with it. Happy anniversary to me.