Joining the Borg: Activation Day

The longest stretch of time seems to be from implantation to activation. Steve, Scott, and I headed over bright and early and actually had no traffic. We got to Dunwoody early, so we stopped at Einstein Brothers for a bagel....but who can eat at a time like this?

I knew Advanced Bionics was sending a rep to my activation. My audiologist is pretty new; she's still great and well trained, but AB will send a rep if you'd like, and I thought it would be a good idea. I walked into Dr. B's office to be greeted by three smiling members of the AB team. Susan, the senior clinical specialist, would be assisting Katie (my audi), and the other two (Apryl and Teresa) would be watching. They said watching activations never gets old...kind of like a LDR nurse never tires of seeing a birth.

AB reps at activation

In we went to Katie's office, where I was connected to the computer. First she checked the electrodes by seeing if I could hear a series of tones (more like zydeco drums). Even though I had implanted my good ear, it had been silent for 3 weeks. It felt great to hear something on that side! After the tones, Katie and Susan configured the comfortable loudness level. Then, it was time to activate!

Honestly, I have felt all along I would have a good activation. Often people who are late deafened do. I tried to temper these thoughts with reality. But inside, I thought: everything in this hearing journey had felt like the hand of God had been on it. I really didn't think He'd brought me to this point to only hear mush.

So, the proverbial switch was flipped. People talked. I heard what sounded like what I'd imagine in a low budget sci-fi flick. I imagined the dash of the cheap space ship flashing with unintelligible garble. Eek...is this what I'm going to get? Rats...it wasn't going to be a rock star activation. =(

Everyone kept talking, then something kind of clicked. Wait! I heard that...that was like a word. Then another...then another. I heard words!! Granted, the words sounded like everyone had waaaay too much helium before speaking, but they were words!!! Susan did a word test, and I got more than I missed (broccoli?? who threw that word in??). Then I repeated several sounds--and I wasn't lipreading because she covered her mouth. Steve said he couldn't even hear what she was saying, but I COULD! We all talked and laughed! Then someone on the other side of the room said something and I understood! I haven't understood someone 6 feet away in years! At this point, there wasn't a dry eye in the room--pass the kleenex, thank you very much. I am a rock star!! (Alvin and the Chipmunks and Mickey Mouse are both stars...and if voices sound like theirs for a while, that's ok!)

Scott, my videographer and love!

On the way home, I was able to talk to Steve and Scott without looking at them. Wow! This is so cool. Scott tormented me by crumpling a roll of paper towels (just to see if I could hear it)...what an annoying sound.

Back at the house, I experimented with a variety of sounds most take for granted. Water is really loud! The dog laps water really loud. Salt in a shaker makes noise. The doorbell isn't broken...

I wanted to let my friends know my results...but I wanted to tell my mom first. Mom doesn't do facebook, so I picked up the phone (most CI patients cannot hear on a phone for a long time, but I have a caption phone). I was able to talk to my mom...and I didn't need the captions for most of the call. Using the phone on activation day just is unheard of...I truly was a rock star! My mom was overjoyed that we could have a phone conversation again...and there might have been some tears involved!

I sent a text to my best friend, Amy. I wanted to see if I could hear her voice, so I asked her to come over. We went to do a few errands. On the way, we could talk...and I heard nearly every word without looking at her mouth!

Amy and I in the wind chime section

Last week I went to Hobby Lobby. I rang the wind chimes, hoping to find one I could hear. Only the one with the big pipes was a low enough tone that I heard it. So, Amy and I headed to the Hob Lob to give the chimes a ring. I closed my eyes and told Amy to ring something...and I heard it! In fact, I heard every chime in the store...because I rang every chime!!! A few women came around the corner and one said, "You seem to be enjoying yourself." (read: aren't you too old to be ringing the wind chimes like a little kid?) I said,"I am!! I got a cochlear implant and haven't heard wind chimes in years...today is my first time and I can hear them all!!" She got so emotional...she cried. (note to self: when someone is acting bizarre in public, there might be a good reason).

Next up: end of band camp show. I could hear some of what the band director said through the microphone--not all, not even most, but some. Before I would not have known someone was talking. The kids sounded great--and I was glad to have a volume control!

We went for a pizza afterwards. The restaurant was incredibly loud...miserably so. I put the volume as low as possible and ate fast. By the time I got home, I was on serious listening fatigue. I went to bed at 9:30.

Advanced Bionics has a forum for people to share info on cochlear implants. It's called Hearing Journey--because this is a journey. Activation day is just the start. Each day my hearing will improve and become more "normal," or at least, my new normal.

Thank you all for joining me on my journey!

I don't believe in coincidence

Five years ago I started a Facebook group for moms who have a cadet at West Point. It's grown a bit and now has 2000+ members. The information shared in the group led to Debbie and me writing The Mom's Guide to Surviving West Point. Old news, for many...but that leads to why I don't believe in coincidence. Over a year ago, Facebook came out with a new feature allowing you to "pin" a post to the top of a group page. You could make sure everyone saw an important notice. You could pin up to three posts. What they didn't tell you was that you must "unpin" the post before you delete it, or it counted against your three and you could not pin any new ones. You cannot unpin a deleted post. The last several months have been very frustrating as the admin team on the group (ok, it's grown, so now we have 15 moms who help with the group) tried unsuccessfully to contact facebook to fix this glitch. We wrote on the help page dozens of times. Nada. Last month, one of the moms in the group shared that her son's summer assignment was an internship at Facebook. We begged her to have him check into this...at least tell a real person in California our concerns and see if it could be addressed. The cadet started his internship last week and yesterday the problem was fixed. Yes, a West Point cadet fixed Facebook. Coincidence?

Why I can't understand you....

Thirty-two years ago I was at Step Sing at Samford University to see a current boyfriend's club perform. The group before his did a beautiful song in sign language. I thought that I would like to learn that. In fact, I thought it might be fun to teach deaf children. So, at the University of Montevallo I earned a degree in the Department of Communication Sciences and Disorders (aka deaf education). I list the other because it's a degree very heavy in the science of deafness. I studied hearing science, anatomy of hearing, audiology, sign language, etc. After graduating, I taught a few years then stayed home when the kiddies came along. When I went back to work in the early 2000s, I didn't re-enter the deaf ed field, as my sign language skills were pretty rough. Instead, I teach middle school language arts to fairly "regular" students. But then,  started to lose my hearing. At first it was only a smidge noticeable...no big deal. About five years ago, it became a real problem. I started wearing hearing aids and visiting the audiologist yearly....and read those audiograms that showed my hearing plummeting. Most people only learn to read an audiogram when hearing loss starts. I'd been doing it for years. My hearing loss was progressive and fast. By March of this year, I was profoundly deaf. My hearing aid gave me very little help. I was beyond frustrated trying to understand and communicate (and so were the people who had to repeat everything three times). On July 3 I was implanted with a bionic device known as a cochlear implant. It is a miracle of modern science and will allow me to hear again. It will not be the same as before--stayed tuned for a follow up blog to see just how well I am hearing. Activation is Friday! In the meantime, I've been studying sign language again and have been able to attend some events with an interpreter. What a joy to have that information stream flowing without struggling to lip read! I had no idea at 18 that this would be my life at 50. Coincidence?

Every day things happen in our lives....often things that we shake our fist at God and scream (or at least wonder), "Why???" And yet, here it is...stated clearly and succinctly: Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Now, here you are reading this today. Coincidence?

I wanna be a Rock Star!

I am five days away from activation of my cochlear implant. I am so excited and terrified at the same time. Are my expectations too high? Are they reasonable? In the cochlear implant (CI) community, we have terms for the different types of activations: (Actually, we just made some of these up.)

1. Rock star--voices are clear from the moment it's switched on
2. Country music star-- every thing sounds a little bit twangy.
3. Marching band-- big sound but with a lot of background noise.
4. Bar music-- loud but cant make out the music or conversation
5. Electronic mush--a jumbled mess of unintelligible sounds

Obviously, I want to be a rockstar!!!

 I've been thinking so much about sounds lately. Probably because post-surgery, I'm more deaf than ever. It's normal to lose residual hearing during surgery, so I am not surprised to be totally (I mean 0 sound) deaf in my left ear. Even with the new electrode, which should preserve some residual hearing, I have nothing. This is just a post op issue from swelling and blood accumulation. It should change when I am totally healed.

Here are some things I'm looking forward to hearing--after #1, no particular order:
1. Voices of my family & friends
2. Birds
3. Rain
4. Inquisitive students
5. Snarky students
6. Musical theater
7. The radio
8. The doorbell
9. Oven timer (no more deaf cookies--those are the ones I burn when I don't hear the timer)
10. Sermons
11. Tennis line calls
12. Cicadas and frogs

I've had several people tell me my journey could be the basis of a new book (my first book is linked here). For a while I thought, "No, there are too many CI stories out there." However, everyone's story is different. If my story makes a difference for someone and helps just a little, then it's worth telling. So, I guess this is me going public...that this fall, after activation, after starting school, after embracing the new common core curriculum, after starting sign language classes at GPC, after "helping" #3 son get his act together for college apps, after going to Rucker for Matt's pilot graduation, after...after...after...I will start my book! In the meantime, if you think about it and/or so inclined, please think happy thoughts and say a prayer for my activation on Friday. I wanna be a ROCKSTAR!

Five Minute Friday: Belong

On some Fridays, when I remember, I blog as part of a bigger group of women called "Five Minute Fridays." Do you blog? Consider joining us!

This week's topic is "belong." What does that mean? This blog is primarily focused on my life with a hearing loss; my hearing loss impacts how I view pretty much everything--especially my sense of belonging.

Where do I belong? First and foremost, I belong to My Creator. I am "fearfully and wonderfully made." (Psalm 139::14). That means even deaf...even someone who used to hear but now is deaf. Hopefully I will soon sing "I once was deaf but now I hear," just like (sort of) in Amazing Grace. I have peace because of the belongingness and the promises of God. He promised also that He has a plan for me: Jer. 29:11: For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope."

These are the four best humans I know. I belong with them!

Next, I belong with my family. During the whole hearing loss "thing," my family has been terrific. My boys, who are always great, have been more thoughtful and attentive. They are generally worried about their mom. I've muddled through the last several years with a progressive hearing loss, but when it just tanked in March, they were right there with me, being loving and encouraging. My husband (read prior entries to re-live his awesomeness) has been my rock. He has dealt with doctors, hospitals, insurance companies...everything he can to make this journey easier. He even drives slower on 285 on the way to the specialist so I don't freak out as much (Atlanta traffic=bleh!).  He never gave up on my getting the help I needed (in my case, a cochlear implant). My parents, who have dealt with my mom's hearing loss for 40+ years have been great. They are some of my biggest cheerleaders! I am so glad to belong to these people.

My friends are the best. Even when I cannot hear them, they have not abandoned me. They have checked on me, called (talked to hubs), sent texts, chatted on facebook...I know I belong with them. My friends committed to pray for my situation. When all signs said that there was no way the insurance would pay for the cochlear implant, my friends prayed harder...when the hospital statement for just over $88K arrived the other day I was so happy to belong to praying friends--that booger is just a statement, not my bill! I sooo look forward to hearing my friends' voices soon.

I even belong to my work. I'm a middle school English teacher. The best part of my job is being with the kids and building relationships with them...so they know they belong. The past two years, I really couldn't do that because of my hearing. This past week I had 4 days of workshops. Two days were required and two were optional. At the required workshop, I had work friends volunteer to take notes for me. They made sure I knew what was going on. They understand my need to belong and contribute. They get my feelings when I say, "I'm not stupid--I cans still think, talk, contribute; I just can't hear." Thank you Susan, Renee, and Gina. The optional workshop was an institute with keynote speakers. I love to go to these things...but am so surprised how many teachers don't go. I talked to the director of the department back in the spring about my attending and what that would mean. Under the American's with Disabilities Act (ADA), I asked for accommodations. I had a sign language interpreter. I loved feeling like I belonged to this group because we shared the learning. How awesome to take in information without the struggle of lipreading/guessing. Some people looked at me funny--like what I had was contagious. I wonder, how many times do we make people feel like they don't belong? My deafness is changing me; I'm going to be a better person on the other side of this journey.

Where do you belong? Do you make others feel as if they belong? I am very blessed. I have a cochlear implant now. I will be activated next week and then hopefully I will have useful hearing again. I will belong to a select group of bionic people (also called The Borg). I am very excited about this....I feel like I'm getting part of my life back. This is not all of my life, as my life is defined in my relationship, which don't change, because I am where I belong.

Becoming a cyborg (part 2)

Eventually, I began to feel almost human. My walks to the mailbox progressed to walks around the block (the shorter section). I ventured out shopping, because it's time for all the cool school supply sales (folders for 1 penny!). Then it was time to go to the doctor!

I had my appointment to have my staples removed about a week after the surgery. I was really looking forward to this. Have you ever had staples in your head and accidentally rolled over on them? Ouch. Just ouch. This is what they looked like:

Not for the squeamish...and what a bad haircut!

 They came out pretty easily and then we were able to discuss how I was doing. One of the reasons I selected the mid scala electrode was because it is supposed to preserve residual hearing. When I was at the beach in June, I could hear the waves (yay for low frequency sounds--and isn't it cool that sounds are produced by waves and I could hear waves???).  I didn't want to give that up. Unfortunately, I am hearing nothing--nada, zip, zilch--out of my implanted ear. The doctor said everything inside my inner ear is pretty swollen from the trauma of surgery, plus some people (read: me) have blood that accumulates there post op. The blood is keeping me from hearing. The blood should clear on its own in a couple of months. In the meantime, imagine the pressure of fluid in your ears...kind of like an ear infection but without the infected stuff. Sometimes it shifts around and it really hurts. The doctor said the blood would not be an impediment to hearing once activation day comes (July 26).

Dr. B: the Cyborg maker!

As you can see in the picture, I also received an oh-so-flattering (not) haircut. Since I don't remember the procedure, I asked Dr. B who was responsible for it. He said he was. I told him not to quit his day job. Now Dr. B has quite the reputation. Everyone says he's the best in Atlanta, but he has NO bedside manner, no humor, no personality...zip. He tries to be intimidating, they say. But, as I'm over 50, I'm so way past the "doctor as God" mentality that is so pervasive. So, when I go to see him, I try to be my typical witty self, regardless of whether or not I get a response. C'mon, he can't be that bad; he went to Wayne State, just like my dad. My mom went to him for a CI eval...she thinks he's cute. What do you think?  From the picture, you know he can smile. After my comment about his barber skills, he asked about any other issues. So I told him that my ear is numb. He looked at me funny, grabbed my chart, and flipped it open. He said, "Is this your signature?" I acknowledged it was. Then he flipped the paper over...it was the possible side effects disclosure form. What a riot...he does have a funny bone. I laughed the whole way home.

Cindy Winter-Hartley (proud Ranger Mom!!) and I

So at this writing, I have 11 days til I am a full-fledged member of the Cyborg Nation. I'm trying to stay busy so that activation will get here faster! Some things help: yesterday my dear sister-in-all-things-West Point-and-Army, Cindy, stopped by on her way through Atlanta. We had a brief visit and fortunately, she is very easy to lip read (because I'm really, really deaf now).  As a fellow Army mom, Cindy understands my heart...and my desire to hear so that one day when Matt calls home from some far corner of the world, I'll be able to understand what he says. Cindy is another dear friend whose been praying me through this journey. <3 her. 

You all sound like this to me...if I hear you at all.

But it's not all fun and games while waiting for activation. In Jawja, we start school ridiculously early...like in a few weeks. This week we are meeting to do some preliminary planning. How are you doing that, you ask? Aren't you deaf? Yes, yes I am. I came into the meeting this a.m. and explained to the teacher leading it just how deaf I now am. I can really hear like, well nothing. If someone has a deep voice, I can hear the prosody (rhythm, stress, and intonation of speech). Imagine Charlie Brown's teacher. That's what I hear if my eyes are closed (if that much). I am a decent lip reader if I am getting enough prosody. Soft talkers (i.e. many women teachers) do not have the prosody necessary for me to comprehend them. My friend Susan volunteered to be my "note taker" for the meeting. We set up our computers so that she typed into a program and it showed up on my screen. She kept me up to date with the "gist" of the meeting. Someone else took official minutes...this was off the record stuff like "now they're talking about organizing the lesson plans." Unfortunately, only a stenographer would have been able to keep up with the minutiae of a 6 hour long meeting. So, the chatter, the inside jokes, the banter...it was all lost to me. Don't get me wrong...it's not that I need all of that. Teacher meetings are often tedious at best. My friend did me a HUGE favor. However, trying to follow the conversation with lip reading was like a giant ping pong game. By the time I realized where the ball was, it was gone. Then there's the whole talking with hands over mouths thing...sigh. I came home utterly exhausted. I mean, I collapsed, fell on the couch, and slept a good while. I know...that sounds like torture. But wait...there's more! I get to go back and do it all again tomorrow.

The making of a cyborg (part 1)

It's been a while since I posted, and much has happened. I'm a cyborg! Yes, I've joined the Borg (you can call me 2 of 3). What is a cyborg? It's short for "cybernetic organism," which is a being with both organic and cybernetic parts
My surgery was originally scheduled for June, but I postponed two weeks so I could have the latest technology, the mid scala electrode. I'm one of the first in Atlanta to get this technology, which has been available in Europe for a while. Having "the latest" positions me for the best possible outcome with my cochlear implant. So, on July 3, I was implanted!
I started the day by checking in with admissions. This had me so discombobulated! Look at the grammar error on this sign:

Really? Go pass?

As a teacher, that was a toughie to get over. I am writing to Northside Hospital this week. Anyway...my preop nurses were wonderful. They gave me a relatively painless IV and a darling gown (with matching socks) to change into. When I've had surgery in the past, the gown didn't match the socks...but I was in Dunwoody, after all. After a bit, I was wheeled into the OR, asked to scootch over to the operating table, and take a deep breath. That's all I remember.
I awoke a bit later in a cozy room. The goal was for me to walk, pee, and eat before I could leave. After accomplishing all of this--plus throwing up  (yay me!), I dressed and was soon departing--just in time for rush hour Atlanta traffic (in.the.rain). Just a short 1.5 hrs later (to go 30 miles), I was home. But on the way home, Matt called--he was coming for the long weekend! I convinced myself it was just to see about me...what a swell kid!

Steve got me settled in my bed and then ran out to get my pain pills...the pain shot I got before leaving the hospital wouldn't be lasting long, so I encouraged him to hurry. He did. The man doesn't mess around with my pain pills. When he came back with them, he inadvertently left the dog gate opened...so Phoebe came to see about me. Did I mention it as raining? @wetdoginmybed!

There is a large wet dog in my bed.

The rest of the day was a blur; I remember chicken soup and drugs...and drug induced sleep. Steve made sure my phone was close at hand so I could text if I needed anything (funny story coming in a bit about that).

Festive for the 4th

The next day was the 4th. It's good to be deaf when crazy people all around you insist on shooting off firecrackers all day. Scott was at camp, but Stephen and Rose came over (with flowers), and Matt was there for dinner. I didn't do anything except look up a recipe for Matt. They fixed a feast! One side effect of CI surgery: your taste buds get all screwy. What I expected to be awesome was only awesome to the other people...to me it was pretty bleh.
The next day, my mom and dad came over to visit. They brought dinner-yay mom and dad! Over the course of the next few days, several neighbors and friends dropped in with food. I realized it's imperative that I do better at bringing people food when they are sick/recovering/whatever. Nothing says "I care about you" like food in the fridge! I am blessed!

Over the next few days, I pretty much stayed in the bed or on the couch. I still needed pain pills and wasn't really up to fixing my own food. On Sunday afternoon I was feeling pretty sorry for myself. Some of my friends on my hearing forum were feeling great at 4 days post op. Not me. I was puny. And on Sunday I was hungry. I texted Steve. Nothing. So, I picked up the phone and dialed. When I saw (remember, I can't hear the phone ringing) that the call had been picked up, I gave my poor, pitiful me message: "Hi...I hope you can hear me because I can't hear you....but there's a very hungry deaf person at the other end of the phone and I'd really like some food. Please. Ok, bye." As I hung up, I glanced at the phone and realized I'd dialed the wrong number.