I need to preface my final post by stating that everyone’s experience with CI’s is unique. My experience certainly wasn’t cookie cutter since there aren’t very many bi-lateral recipients out there. Bottom line is that you need to make the right choice for your hearing loss. I believe I made the right choice by getting bi-lateral cochlear surgery. It’s just a different way of living from what I used to know, and I wouldn’t have a life without them.
When my cochlear devices were activated and I became accustomed to the devices hanging on my ears, it took about a month for my brain to realize that something was not quite right.
Still not being able to use the phone (it takes awhile to train your brain to get used to the devices let alone use another high tech device), Dave made a call to my surgeon and we paid him a visit.
“This is a common side affect from cochlear surgery,” He explained. “You’re encountering positional vertigo. You’ll need some rehabilitation in order to train your brain to re-balance itself.”
So, off I went for rehab. In about a month, I was feeling pretty good. Doing the daily exercises helped with the dizziness, and I was able to function like a normal person, if in fact, I am a normal person. One of the exercises had Dave throwing a tennis ball to me from behind where I would have to catch it from side to side, looking back at him while I caught the ball. We did this down our street, so you tell me how normal we are….
With the wonders of technology, my cochlear devices came equipped with all kinds of attachments and parts in order to make my life as normal as possible. One of these attachments was the ability to connect to my ipod thru a splitter. The only way I can understand music is thru my ipod. Music that I have grown up with and have known prior to surgery – the tunes my brain recognizes – were pretty easy to recapture. On the other hand…..
New songs that I would hear on the radio would sound like gibberish. If the bass was turned up enough, I could get the beat. But, unfortunately, the radio provided a very poor outlet for me to hear any new music. So, I retreated to my ipod and downloaded the popular songs like Lady Gaga’s “Poker Face”, which at first sounded to me like she was singing, “Cherry Pie.” Go figure. Yeah – it was a good laugh all around. You should hear some of the stuff I think people said when it turns out to be something completely different. Any, I digress…. I had to listen to the song about three or four times in order for my brain to understand the lyrics. After that – no problem!
Six months had passed, and I started having headaches. Not bad ones, but headaches that would make me feel a little “off”. Kind of dizzy, but enough to still function. However, each month got worse and worse, when one day while working on the computer, I had a deadly “spin”.
I stopped in my tracks, grabbed my head and said, “holy shit.” I couldn’t see straight. My eyes were shaking back and forth at a rapid pace. I immediately felt sick to my stomach. Luckily, I was on the second floor of my home. I crawled from my office to my bedroom and made it to the bed where I closed my eyes and tried to let the vertigo pass.
It took 6 hours with a bucket by my side.
A few days later, it happened again – this time, I was in bed for 8 hours. How am I supposed to function like a normal person? When these episodes happened, my husband was right there to help me, thank God. And, one day while out with my son, I had an episode which required him to escort me to the car and have him drive me home, and he’s only ten.
He’s 17 with a valid drivers license. I don’t know what I would have done without either of them throughout this entire journey.
Most of 2010 was spent in a spin. Doctor visits, numerous medications, and constantly sick. I finally came across a brilliant Neurologist, Dr. Timothy Hain out of Northwestern. He’s known as “The Dizzy Doctor“. If any of you reading my previous posts recognize you or someone who has the symptoms I’ve noted, I highly recommend making an appointment with Dr. Hain. One cautionary note though: You’ll wait about three months to see him, so plan accordingly.
The initial impressions and final diagnosis:
1. Bilateral Meniere’s disease
2. Migraines without headache.
By the way, and I quote from the doctor, “Nancy is certainly a fascinating patient. I think that the “loud attacks” which she experiences are reflective of her migraine. About 50% of persons with Meniere’s have migraine.”
The “loud attacks” happen often. Mostly toward the end of the day, things will all of a sudden get extremely loud, causing me to take out one device, or just shut off and go deaf until it passes.
So, I’ve tried topamax, propranolol, nortriptyline, valium and now effexor. The first three meds had fascinating side affects from low blood pressure to depression. And, although I always have fascinating dreams, one type of medication actually made me violent while I slept. At one point, I would literally sit up out of bed and punch in the air – I almost gave a left hook to Dave at 2 a.m. He started sleeping with body armor…..
Currently, the Effexor seems to be doing it’s job with a few minor set backs. It will take months to get weaned off the valium, and that starts in about three weeks.
But, that was just the physical part.
During my long and progressive journey of losing my hearing, I also lost both parents. Both of them died a year apart (My father on January 3, 2007, and my mother on January 3, 2008). Right after my mother passed away, that’s when the real serious issues with my hearing began.
After the implants were taken care of in March, I tried to get used to a new normal of hearing. It wasn’t easy. Along with the inability to hear music naturally again, I had to get used to the telephone and listening to people on the other end. If it’s a poor cell phone connection, or if someone talks too fast for my brain to process, I have to ask them to please slow down what they are saying. Most people often understand this. Others do not. Ever try to understand a fast talking helpdesk person from India on the phone? So, you can see where I’m going with this.
I also had to get used to loud settings like restaurants, bars and weddings. And, if I can’t understand what people say and have to ask them to keep repeating themselves, it gets old after awhile, and they just don’t really want to talk to you. I also didn’t want to become a “Close Talker”. Those familiar with Seinfeld would understand this. Loud noises are a major trigger for my migraines, so I either need to go into a noisy situation deaf and adjust one ear at a time, or just remain in silence so I don’t trigger a “spin”.
So, I lost my parents and my hearing within two years time. I realized in November of 2009 that I suffered from depression. I’m normally a happy person with a type A personality. I had begun to notice that I would cry before I even got out of bed in the morning, and I had absolutely no reason why. I was just plain sad. I would get anxious whenever I had to use the phone. I couldn’t sleep. I had thoughts of dreaming that if I died, I would feel relief and pleasure because I would be able to hear naturally again, not having to deal with all the sickness, feeling “left out”, and wearing hardware on my head. I didn’t care about anything except in realizing a profound sense of loss and knowing that I would never get these things back in my life again. Too much loss within a short period of time finally caught up with me……
So, after a long talk with Dave, and with the help of a friend on suggesting a good therapist (you know who you are and THANK YOU), it took me about six months to get back on track and realize that this is my NEW NORMAL. This is who I am. I can’t go back to what I had because it’s not possible. And, if people can’t accept my inability to hear and try to accomodate, or if they plain just don’t care, I then realized I can’t control them and had to let go of these poisonous relationships and resentful feelings. Who needs it? My concern became at that point to try to function as normally as I could based on the major life changes I just went thru.
From that point forward I took a new outlook on my life.
I am grateful for what I have and that I have the ability to hear. At least I can hear which I was not able to do before. I can hear birds again. I can hear my husband snore (if I want). I can watch tv without closed captioning and I can lead as normal a life as I possibly can with what God has handed me. I put things in perspective and think about people who suffer in other countries and what they have to endure without any medical treatment. I’ve listened to stories my husband has told me thru his experiences in the military and what he has encountered with regard to the treatment of human life.
When I stepped off my secluded island, I realized that my journey into silence is miniscule compared to what others’ endure every single day. I don’t want to belittle the fact that my journey to silence was easy, because it wasn’t, and it still isn’t. But, when you consider the big picture, I feel pretty damn fortunate.
Today, I can state that I am in a much better place physically as well as mentally. I may still have a few mountains to climb physically, but I’m used to that. Mentally, I’ve become a stronger person not only for what I’ve gone thru, but I’ve shown my son perserverance. Or perhaps he has shown ME perserverance – a trait he has taken on with wild abandon. He never gives up, so why should I?
Throughout my journey, I obtained a college degree. I started a business in web design. I take care of a home, and two dogs. I’ve raised a child single handedly with great success (so far), and I’m proud of myself that I can hear with my brain and not my ears like God has given most everyone else. If it takes me a little longer to understand what you say, please be patient. I’ve learned to slow down my pace in life (if anyone knows me well, they will understand this was not an easy task), but I just can’t go at a rapid fire pace like I used to. And, to this, I do not consider a bad thing.
Thanks for reading my journey to silence. If you know of someone who has a hearing problem, or recognize within these past posts that this may be you or someone you know, please send me an email at firstname.lastname@example.org, or visit the Cochlear website at http://www.cochlear.com for more information, or to share your experience.