Deafdude, I think I only scored 50% comprehension in trying to read your last quilt of a post, with all of the embedded quotes stitched together, it's almost schizophrenic in its cacophony of voices. But if I had to distill it, I'd say your point is that you think we who have CIs, have kids w/CIs, or who are considering CIs don't want to hear objective accounts from those who have had positive and negative experiences. I strongly disagree. If that were the case, we'd only read the first couple of pages of the brochures from CI companies. We wouldn't talk with surgeons, ENTs, audiologists, schools, speech therapists, those who've received CIs, their families, we wouldn't research scientific papers, review studies.
I do want to hear the reality -- warts and all: FROM THOSE WHO HAVE EXPERIENCED CIs. That's why I've joined endless groups of CI recipients where people point to real data sources and tell their own stories. You relentlessly proclaim that you are providing info, and when it comes to your HAs and how they affect you, I believe you and I care. But you don't know what you are talking about when it comes to CIs and your clips from who knows where are not useful, they are just noise. If you want to get the straight scoop in terms of real life experience with a CI -- good and bad -- ask the many, many CI recipients on this board, ask Faire Jour or me what it's like for a child.
What on earth makes you think that you have insight that trumps what we are experiencing in real life? These are our children being implanted, our spouses, ourselves. Do you think we're not researching the hell out of the possibilities, the probabilities, the outcomes and risks given what's at stake?
If something goes wrong with my daughter's CI, or I'm disappointed in the results, don't you think I'm going to be the biggest critic, the loudest advocate for improvement? I'll shout it from the rooftops: The CI is a pain in the bum: we have to maintain a lot of equipment, deal with insurance and upgrades, processor failures. We've gone through 6 processors, at least, in 2 years. Would you give an expensive iPhone to a 3 year old to carry around and play with all day? Now multiple the cost of that iPhone by 700, and then fish it out of the bath, the pool, the washing machine. Try making that processor stay in place while downhill skiiing in frigid weather, or see how fast you can get it off her head as she's about to leap out of the kayak. If somebodytouches her processor and gives her a static electric shock: poof, her map is gone and we have to visit the clinic for a new program. Want to know how I feel when she is doing music lessons, her setting is on high sensitivity so she detects pitch accurately and the dog walks in and barks loudly, bringing her to tears? When my child cries because she hears too much, too painfully, that's very bad. I'll tell all, I'm not hiding anything, and I don't gain a thing if someone else goes off and gets a CI. If anything, I don't want ANYONE to get a CI without knowing the good and the bad, because I never want to read that someone thought that with a CI in place a magic button would be pressed, he or she would have full hearing restored, all wishes granted, world peace, and shiny bouncy hair, to boot.
But I'll also tell you honestly that it's an absolutely amazing tool that has provided Li-Li with music, with song and the ability to talk with her grandparents on the phone, and if you heard her joyfully chattering away with her cousins, singing in the backseat of the car, playing piano, or reciting her alphabet and days of the week in school for 5 minutes you'd see why these annoyances and downsides are meaningless to us.
Very funny -- Such a great analogy!
