Getting on soapbox.
I just read some difficult things on an online cochlear implant community. There are just so many myths about implants. Rather than feeding a fire and commenting on this community site, I am putting my two cents here.
A CI is a computer. Inside your head. With a processor outside your head. It's designed to send sound directly into your cochlea, bypassing the damaged part of your ear. Therefore, hearing through an implant is not the same thing as hearing naturally. Of course the sounds are going to be awful compared to natural hearing. It's a computer. It's sounds are mechanical, high pitched and distorted. Those sounds are hard to listen to and adjust to. But.......amazingly, most people adjust.
However, some do not. There are so many factors to consider. Your support network. Your degree and length of hearing loss. Your own speech skills. Your listening practice. Your emotional stability. Your physiology. Your motivation. Tinnitus. Etc, etc.
If I only based my success on the first couple of weeks, I would have thrown my processor away. A CI is not an instant cure. It's not a cure. It's a device designed to help you function when without it, you wouldn't function. Some people feel it's a success when after 6 months they hear environmental sounds. Some people feel it's a success when after 6 months, they can hear environmental sounds and speech. Some can clearly understand speech on activation day. Regardless of individual success levels, it's a hard process and it's an emotional process. And it's a noisy, unnatural process!
But if you can hear more with a CI than without it, isn't it worth it?? And if the chances are that you will become more successful after going through rehabilitation, wouldn't you put your efforts into auditory therapy? And if you are going to go under the knife to get an implant, wouldn't you actually do the research first to find out what an implant actually is?
For those who are struggling with how their CI sounds, they likely need support and validation. They likely need suggestions on how to improve the listening experience. Not judgment. For those who get amazing results quickly, good for you! But please, acknowledge the struggle that you also went through. I learned something from a very good friend. During the struggle, you suffer. When the struggle has subsided and the success has taken reign, you are able to assimilate the suffering as "worth it." You are able to put it in the proper place in your emotional experience. And you become happy, grateful, thrilled for your CI. And loyal to it. However, in the depths of the suffering, it's very difficult to see the light. You feel lonely. You feel betrayed. You feel darkness. And you are negative. That's a very normal, very human process. It doesn't mean that the success stories around you are false or overly optimistic. It means they are further ahead in their journey. Let them be.
To those considering an implant, do your research. Know what you are getting yourselves into. And set up a support system to help you through it.
To the professionals who install and program implants, stop saying "everyone is different" and tell people what to expect! Try empathy. Really. Nothing to be afraid of. I'll even practice with you- "It's difficult to hear unnatural sounds all day, you are showing great courage." Or "Feel free to vent about all the hard parts of this process because it's normal to have hard parts and then when you are done venting, we are going to try a new map."
To those who are in the depths of the suffering, know it's going to be okay. Measure your success in small ways, not in "normal hearing." Patience will be your daily trial. Ask people to help you notice what you are doing well.
I love my CI. But that love has not come without it's share of blood and sweat and tears. If it never got better than what it is today, I will still be happy with it. Because today, my CI combined with my hearing aid and my hardworking brain and my lipreading skills and my assistive listening devices, I am functioning well. And that's more than what I was doing a couple of months ago.
Getting off soapbox now. As one of my new hearing loss friends says..... blessings to you :)
4 comments:
You have always been amazingly optimistic. I have always been impressed with your ability to be positive when there are so many things raining down on you. I've often thought "if I could have your patience..."
Most people want a magic pill, a surgery, a quick anything that they don't have to work for. Therapy is work, HARD work, in most cases. Losing weight, paying your own bills, these things are work and a lot of society and new technology says, "we have found a way around work, it's as easy as_____" Many things are only worth the work you put into it!
I especially like what you said about 'telling it like it really is!' Amen! Yes, everyone is different, duh, but if it's going to be painful, say so!
I get so frustrated with what I call "the chapter 27 answers" 'this may be uncomfortable' - translation being this is going to be intensely painful! Or, 'some days will be harder than others' - translation - somedays you will feel like you're at a dead end, depressed and discouraged.
Nice soap box :)
You preform well on a soap box :)
the soap box suits you. blessings to you too....
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