Sunday, June 8, 2008

I am so scared now!

---Sorry this is so long. I hope you all read it anyway.---

I went to this annual "deaf picnic" on Friday which is something the Sertoma Club has been doing for at least as long as I've been in kindergarten- perhaps even before then. But essentially, that is around at least 13 years!! So these great folks gather money or solicit donations for the delicious burgers, plethora of chips, a signing clown that makes balloon animals, and face-painting. Deaf children are shuttled from their elementary schools from as far as 40 miles away to this picnic, so they can meet other deaf children and enjoy a day in which they can communicate with EVERYONE. I went pretty consistently in elementary and junior high since they were taking the deaf children on the buses anyway, and my best friend and I were ALWAYS eager for an excuse to miss school!

The real attraction is not the food (there's never much there, despite the deliciousness!) nor the blaring fire truck, or the playground, but the singular feeling of unity.


But as I got older and changed school districts, I stopped going as consistently, but would go if reminded about it and offered a ride. So, this year, someone from elementary school brought it up and as usual, I had forgotten completely about it. Then, my best friend offered to pick me up all the way from Seattle and bring me back to her home and then drive me to the picnic the next day, since she was going anyway. I hemmed and hawed- "Are you SURE? Gas is so expensive!" and "Who will be there??" but then jumped in the shower. 40 short minutes later, she picked me up.

We stopped at Starbucks for our usual obligatory caffeine fix for our drive home.

So the next day, we got up not-so-early (10am) and got ready. I got stuck with the short end because of being the last one to get up (as usual). The shower water was COMPLETELY cold, and chilled to the bone, I jumped out of the downstairs shower and ran to her mother's shower. It was warm for about, oh, 10 seconds, taunting me with the false hope of a not HOT shower, but at least warm. Strawberry conditioner blinding me, I ran across the hall, my only goal being getting the conditioner out.

With that start, you would've thought I would be grumpy. But nope! I was amused. It really woke me up too which was a bonus. We headed to the picnic, me being her trusty "road guide" with the Mapquest print-out. After several frantic signing RIGHT before the exit ("Tess! Listen to me! I HAVE THE PRINTOUT. I am right! Now go left at the next ramp." -"What? Left?" Me: "Yes." But she didn't think it was correct for whatever reason. (This always happens with us, haha.) Then finally I just resorted to gesturing wildly with my hands on her side of the car whenever we had to turn. There is nothing quite like giving directions to some deaf people. The fact they are looking at you means they are not looking completely at the road. *Gulp* And her driving, as much as I adore my wonderful best friend, already scares me!

We arrived at the picnic, Tess making a sharp turn to fit into an amazingly small parking space that we miraculously found and this being accompanied with my closed-mouthed shrieks (so she wouldn't know I was whimpering like a puppy separated from its mother). The car stopped and she brightly said, "Well! That was fun. We're here!" I stared at her. After a moment, I could only laugh and agree we were, indeed, here.

We got out and immediately stayed together, like magnets. We have been inseparable at every picnic and this was no different. If someone can't recognize one of us, they can usually always tell who the other one is and immediately deduct who the other one with her is!

I was surprised at how QUIET it seemed. It was still noisy- kids laughing but otherwise it was ridiculously quiet compared to what it would've sounded like with THAT many "talking" people. I was surprised I even thought about it. Would I have, before? Perhaps I am more deeply ingrained with my hearing aid and the sounds it brings me than I know. I liked the fact I could talk out loud and the majority would literally not hear me, and only see my lips move. I mouth pretty well, even though I still don't know how to pronounce many words or speak as fast as I sign! So I happily grabbed the chance to practice speaking out loud.

I saw many people from elementary school and a few from junior high, as well as the various teachers and interpreters, but it was definitely apparent that soon we might not go to the picnic in future years. I graduated in 2007 but still know some kids that haven't graduated yet. But we didn't recognize the majority of the people. Tess and I separated for a brief amount of time, in which it started raining. Hard! We all ducked for cover and lamented at the bizarre June weather.

Unlike past years, I kept my eyes peeled for any cochlear implant users. Tess and I were walking and I saw an adorable little girl with an implant, sitting by herself. I wondered if she knew sign and if the implant was a factor for her sitting by herself while most other kids were with someone else. Then, I saw a boy about 5 years old with an implant from what seemed like the Cochlear company. I immediately recognize their pieces because I greatly dislike the look of the processor. He was signing and without thinking, I looked at Tess and said, "That processor! I dislike it! I'm getting a CUTE one. I wonder why he isn't TALKING? I wonder if he can talk, I wonder how he feels about having an im-" before stopping. Tess was looking at me with a bemused expression. "Never mind," I sheepishly said. I only saw about 4 kids with implants out of the perhaps 100-200 people there.

Before I knew it, everyone except a group of about 15 people had left. The people remaining were friends from elementary school and many of them knew each other from high school. (Degrees of separation, anyone? If we didn't know someone in the group, we could easily make an connection with who we BOTH knew.) We decided to go to Red Robin's and we all crammed into a long table. We were told we were violating the fire code, so some of us split up into different tables.

We were all having fun. Finally, EASY communication in a crowd, in a noisy and busy environment. Hands were flying and LOTS of laughter was reigning. Fries were being consumed at an amazing rate and we kept the waitresses busy! So we decided to drive about 25 minutes north to a friend's house to keep it going.

So, long story made short. At one point I playfully turned over my friend Blaine's silver bracelet, very reminiscent of the "security" bracelets some kids had growing up. It said "Cochlear implant. No MRI/electromagnetic." I stared at him with sheer surprise. "WHAT? You have an IMPLANT? Why don't you use it?!" Everyone else stared at me because I was so out of the loop. I guess it was common knowledge he has one.

I said, "Did you know I'm getting one in about 2 weeks?!" He stared at me and opinions erupted. I was soon surrounded by people I've known since elementary school, all telling me "DON'T GET ONE, Tasha!! Don't do it." Blaine took my hand and told me to feel that familiar place just above and behind his ear. There was a BIG lump there and by big I mean big! Then someone interjected, "Doug, show her." Doug, who I hadn't known before that day, pulled off his hat and there was a wicked-looking white curved scar that was BIG too.

I stared stoically, trying to stay calm even though I felt an emerging sense of panic. I could feel myself blinking quicker, which is something I do unconsciously when I feel like I'm losing control.

"Look, you guys got those when you guys were like, 6 or 7 right? The procedure has gotten better!! There's probably a higher rate of success too. And you two were FORCED to, by your parents. I am making this decision on my own, which already automatically makes it better."

This guy, Travis, who until then had been sitting in a comfy big armchair calmly observing, interjected. "Hey, it's her choice." Directly addressing me, he asked how much I could hear. I felt tears threaten to well up but immediately pushed them away. "I can hear the music right now, and I can hear Phil over there talking, with my hearing aid." Travis looked back at the crowd and said, "Well. She already seems to hear more than most of us do with a hearing aid and likes it. Maybe it will work. Who knows. And like I said, it's her choice." The crowd paused, and then dissipated like a slow fog, back to what they were doing.

I had been sitting on the plush carpet, so I scooted over to the armchair. Kneeling by his knee and signing low so nobody could see me, I said, "Thanks for helping me out back there." Travis looked at me. "No problem. I just hope it all works out."

Feeling a bit lonely by this time- having just "outed" myself in a sense- I grabbed my notebook and began to sketch. But 40 minutes later, the pizza arrived and everyone seemed to have forgotten about it. So it all went well until WAY later that night. It was actually probably 9 or so hours later!

Someone else found out I was getting an implant and came up to me and said, "Honey, please don't do it. I got one too, when I was 21, and it didn't work. It doesn't work. I know how you feel- I wanted to hear too, and understand speech, and all of that." I finally lost it. Hot tears spilled out of my eyes, as Blaine, Stacia, Doug, and Phil gathered around me.

Tears kept running down my face, dripping down onto the comfy carpet. I said, "But I HAVE TO. I will NEVER know if I don't try! But you guys have seriously freaked me out! Look at Doug's scar! And Blaine... and now you too, Stacia? But I HAVE to try. I want this."

Realizing how scared they had made me, they gathered even closer and apologetically comforted me. Stacia hugged me and said, "I didn't try to learn, I don't think so. And I don't think Blaine did. He was only 7 and his parents forced him to. He did go to classes and all but I don't think it was quite as motivated as you were. It's okay. If anyone can do it, you can."

I started protesting- "But what about you guys? Maybe this is why I can't find much information on people who got this surgery when they were profoundly prelingually deaf, like us. What if this doesn't work for me...? But I HAVE to try. I'm not backing out."

Visions of a future danced in my head, of cruel scalpels, even crueler scars, and cruelest of them all- trauma.

Tears kept rolling down my face. I couldn't even care about how many people were seeing me cry, when I RARELY cry. (I have cried more since March than in YEARS.) I was just seriously terrified but still determined.

Blaine gathered me up in a hug and repeated the defenses I had given him earlier that day but using them as his genuine defenses. ("I was young. You're more motivated. It's your choice. You can hear with a hearing aid. You LIKE hearing with a hearing aid." Etc...)

Somewhat calmed down, because of their somewhat change of heart, AT LEAST REGARDING ME, I let it go. I was still shaken up though, but the rest of the night was really fun.

But where am I right now in my "journey?" Well, I have the pre-op appointment Wednesday- only 3 days. Then the SURGERY Monday.

I am utterly overwhelmed. I am FINALLY afraid. I don't know who to believe anymore, including myself. I don't know if I should believe in myself. I don't know what deaf people or ANY person would label "successful." Is hearing MORE.... enough to warrant getting a hole drilled in my head? I think so, if you truly want it. And I do. But for others, perhaps it is an extreme thing to do for more hearing.

I said before that deaf culture doesn't affect me. But maybe it does, more than I know. I don't want to look into the eyes of a deaf person and say, "I think you're wrong" or wonder at the many deaf children that don't have implants, even though I will say it to them kindly.

I wholeheartedly believe that sign language and hearing can co-exist in the same child and even profit them completely. I think that to keep your child deaf when you wouldn't deny an diabetic their insulin, or an amputee a new leg if they could get it- is totally unfair. I know diabetics don't have their own culture, but that to keep a child trapped in a world of silence- a world of communication barriers- just for "culture" is SO unfair. If I was a foreign immigrant, I wouldn't refuse to teach my child English just to preserve my culture. I would accept BOTH.


A "hearing person" at the get-together said "You should wait for better technology." I stared at her and thought, "So this is what it has come down to?" My parents WANTED to wait for better technology, so I understand the argument. But if there is NO better technology promised for the next 3 or so years, then you are condemning a child to a LIFETIME of silence, when they could have it NOW. But this brings up the issue of my parents- why didn't they choose to give me it "NOW" as opposed to waiting? Was it easier to NOT subject their baby to the knife? Or was technology not all that good back then? (Blaine's lump, Doug's scar, Stacia's failure- all about 6-12 years ago)....

Is 6-12 years THAT long, considering FDA regulations and how long it takes to get past them? Not counting getting funding, research, developing the software, developing the processor..... In my opinion, it isn't TOO long, which scares me.

Have implants come that far since I was born 19 years ago? Did they seem advanced back then, or merely a dangerous thing that doctors and parents HOPED for- and it happened to work? I have so many questions now, and even less answers. Was it a guarantee back then with as good prospects as it is now??

I don't know. But what I DO know is: I'm scared. And I really don't like it. I know I will assault my surgeon with more questions than I ever had before (lumps, scars, success, classes, anyone?) But ultimately? Still going with it. I'm just even more scared now, which doesn't help. I am, interestingly enough, even more motivated. All these people saying it won't work has made me even more determined to see that this surgery will not be in vain. It may be "too late" for me but I will NEVER know until I try.

9 comments:

David said...

My cochlear implant gave me my life back. It gave me life. I understood sentences in less than 2 weeks. The risks are minimal.
I went in at 8 in the morning. I was home from surgery before 4 that afternoon.
My activation was a month latter.
All I know is success.
All I know is my life is back filled with sound.
Filled with conversation.
There are not so good days when I don't understand the barista at Fourbucks, but some people speak lower than others.
I say excuse me or pardon me once or twice and then I get it.
The CI is controversial in the deaf community because it threatens the existence of ASL.
I stay out of the argument and thank God every day that there is this amazing technology that lets me hear my son, my wife, Speeder the worlds fastest dog go "clipity clip across the floor at night. I hear the birds chirp and I love it. Life goes on, but I can hear it now.
Listen to those who embrace the technology, and those who disdain it. But Tasha, fear is natural. I was afraid, but good people like Abbie, Tom and others walked me through the whole scenario. Getting wisdom teeth out was harder and more painful by a mile.
You will do amazing!

Jennifer said...

Awwwwwwwww, honey...I'm sorry...what a rough spot to be in!!
I'm with David...I was in and out of the surgical center in five hours. My surgeon made an incision behind my ear that didn't leave a visible scar...nobody can see it (kinda takes the fun out of wanting to show it off...no battle scars). I had 92% comprehension at two weeks. I know that everyone's success rates are VASTLY different...and that there are many factors that influence success...but I had no fear at all...I wanted to hear so badly that I had nothing to lose. It has to be your decision, for sure...and nobody can tell you with any degree of certainty what the future holds...but I would do it again in the blink of an eye. If you can hear with a hearing aid and that auditory nerve is in good shape, your brain mostly likely has the necessary wiring to process the adventure ahead. I personally think that you are going to do great!! (((HUGS)))

Tom Hannon said...

Tasha, I’m just a broke down rust bucket of a ol’ man whose hearing diminished over a few months, then I woke up the morning of 10.10.2006 to nothing; into a Deafening World of Silence. Since becoming profoundly deaf I have read much on the d/Deaf culture and I have absolutely no say in any of the controversies, good, bad or otherwise; I have no say in something I cannot even imagine.

Long story short, before I lost all hope of never hearing again I saw an ENT medical genius guru at Stanford to rule out any “inner-ear autoimmune disease process” and on 06.23.2007 my world as I had come to dislike sometimes with great anger was suddenly thrown into upheaval - I was a cochlear implant candidate! During that process two from the plethora of my questions had to do with how much hair needed to be cut and how big of a scar was I gonna have, perhaps silly as they were. In my search for answers I saw some really Frankenstein post CI images on the net and was willing to live with “that” if I could again hear a conversation, the songs of birds, the bark of my dog or the sweet sounds of my wife sleeping next to me.

And when I asked my CI surgeon these two questions he looked at me weirdly and showed me his thumb nail. I asked “That’s how much hair you cut?” He shook his head - Yes! “How big of a scar?” He still held his thumb nail up! In the end he cut no hair and my incision is a little bigger than his big thumb nail, and if I didn’t know it was there I’d never see the slight scar running along the curve where my ear is attached! And post in & out CI surgery had it not been for the doctor’s advice I would and could have simply gone about my usual business. My medical genius CI guru used the small incision CI implantation method, and made that micro surgery better!

It’s now been coming up on 9 months since I was implanted and I do not regret a second! The only “difficulties” I have are my changing expectations, wanting more than what can be had, wanting to perhaps again hear the echo of sea as I put a seashell to my now bionic ear! It is true that many sounds still allude me, maybe never to come back, but to be able to converse in normal tone, to hear the dictions & inflections in another’s voice, these are the nuggets of gold I find along my hearing journey. And I don’t regret a second of my decision, and I don’t regret having 16 electrodes instead of 22 cuz I long ago determined it isn’t how many, it what is done with them!

In the end it will be up to you to balance those failures with the successes, it will be yours to chose what you may give up to gain!

~Tom
:: DEAF 10.2006 : CI-BORG 09.2007 : LUMINOID 05.2008 ::

David said...

Go visit Val and read her post today!
She is "tales from a ci gal
http://talesfromacigal.blogspot.com/2008/06/what-have-cochlear-implants-given-me.html

Valerie said...

Tasha,
I had that fear too. I feel what you are saying. I took 5 years to make the choice. I slowly watched my life slip away. I lost all meaning because I was so depend on my hearing aids. 27 years of wearing them as well as 10 years of being unaided growing up. The last year of my life has been the best! Come visit my blog and anything I can to help let me know.

Abbie said...

This is certainly a tough position to be put in and I am sitting here trying to find the right words. There are people out there that can't understand anything with a CI but they hear noises and that is fine with them. I'm profoundly deaf pre-lingual just like you and I was stuck with one hearing aid for most of my life. It takes a lot patience and motivation and rehabilitation. I hear sometimes about the cochlear implant not working but no one ever seems to want to clarify *how* it doesn't work, at least to me they don't want to divulge.

mishkazena said...

It's hard to predict success with speech comprehension with the cochlear implant. If one already had speech comprehension in the past, then the higher the chances one will understand speech after getting a c.i., with excessive rehabilitation or not, depending how long the person has been deaf.

Some people do enjoy hearing environmental sounds with their c.i., though they cannot understand speech because they never had that ability in the past.

It is important that you get a realistic expectation. There is a good movie on HBO where two profoundly deaf adults got their c.i.s after being deaf all their lives. I am trying to remember the name of the movie.. One can hear? The husband had better results than his wife, but they both still cannot understand speech.

It depends on what you are looking for with your c.i.

billcreswell said...

The name of the movie is "Hear and Now"
http://billcreswell.wordpress.com/2008/05/08/hbo-hear-and-now-trailer-subtitled/

dog food said...

you'll do great! anything you can get out of the implants one way or another is wonderful...

the important thing is that you can still drink lots of beer, drive faster than the speed limit, break windows, scare cats, shoot bullets at the stars, tip cows, and be a crazy chaotic animal doing your own thing.

or you can bake cookies. yeah i love cookies too.