Helen Keller Quote

"I'm just as deaf as I am blind. The problems of deafness are deeper and more complex, if not more important than those of blindness. Deafness is a much worse misfortune for it means the loss of the most vital stimulus -- the sounds of voice that brings language, sets thoughts astir and keeps us in the intellectual company of man." - Helen Keller

"Am I my...WHAT?"

David, Joe and I were at a meeting with Kathie, the director of David's school. She wanted him to begin reading a book called Procrastination. Since she had recommended it earlier, I said I had already purchased it (but had also procrastinated on reading it...). So Kathie told him to borrow my copy.

I added (half-jokingly), "I'll get it to him...if I don't procrastinate and forget."

She turned to him and said, "You make sure your mother gets you this book."

David drew back, as if affronted: "Am I my mother's book-keeper??"

: )
Liz

PS the book is actually really good:
Procrastination: Why You Do It, What to Do About It
By: Burka and Yuen

"You know you go to Loyola when..."

David and John are seniors in high school this year. John is still at Loyola, and David was there for about three years. Yesterday at lunch, David told me there are a lot of people who know who he is but that he doesn't know them. To prove their point, David and John told me that there was a list circulating on MySpace a bit ago entitled, "You know you go to Loyola when..." Someone started it with a few entries, then people added stuff as it went along. They discovered it now includes a line that says, "...you know the Hupp twins and you have seen them dance." (David pointed out that he doesn't even attend Loyola Academy any more.)

My children are famous... (is this a good thing?!?)

:)

One of the Griefs of Hearing Loss

This past week has been a tough one. I’ve been very aware of the silence around me in the house. Ok, part of that is due to the fact my teenagers moved the stereo equipment to the basement. It is technically wired to play up in the living room, but I couldn’t figure it out. So I tried finding a portable CD player, to use with my neck loop. I haven’t had much success with that before, but I was growing desperate. No batteries in the house, and my rechargeable ones were dead. I gave up--partly since people would be home soon.

But I was puzzled by the desperation for sound. I think my hearing has gone down more, but not that much--the hearing tests done a week or so ago were almost within experimental error of the ones done 13-14 months before. My word and sentence comprehension level, however, is down. That, I think, is a significant factor in wanting to relieve the stifling silence: it has to do with the telephone.

I have gotten to the place where I am very hesitant to call people. I avoid business phone calls unless there’s a deadline. Some people I know I can understand ok, and some I know I can’t. When I know that ahead of time, I either have my husband or sons make the phone call for me, or wait to talk to them in person, or send an email.

My dear friend Sara is one I cannot understand on the phone. I can call her up, and with great effort between the two of us, we can set up a time to get together. Face to face, I can understand her quite well--when she is facing me. She is one of many friends whom I can understand face to face but, on the phone, I can't catch their articulation any more.

My sisters (two of my best friends!) are two more people I do not understand very well on the phone. We can manage a conversation, mostly, but it’s exhausting for me to work so hard to catch enough to make sense of a conversation. We don’t have lovely long rambling conversations any more. Repeating things, especially when I just don't get it, gets tiresome and makes it awkward. So I often end the conversation, saying (or thinking), "I'm sorry, I'm just not catching what you're saying. Maybe another time..."

My dad is fairly difficult to understand on the phone. The tonality of his voice comes through to me as mush. And he is one who tends to enunciate very clearly! On top of that, now he’s hard of hearing, too, so our conversations are more like a comedy of errors than a heartwarming catching up. I think my mom is more in the middle of my comprehension scale.

People who speak English as a second language are particularly challenging, because their pronunciation does not give me as many clues to be able to extrapolate between the sounds I am able to comprehend. This has cut me off from my former co-teacher, a dear woman from Pakistan whom I cannot understand on the phone to save my life. She moved out of state last year in an unexpected job change for her husband. I have not really been able to speak with her since then. She has called here twice, and I had to get my sons to relay her comments to me. That really put a damper on the spontaneity of the conversation. And she is not comfortable with her written English, so she never writes. We used to have wonderful long chats about a wide diversity of topics during lunch or at other moments during the day. It hurts to have lost her, not just suddenly, but so completely.

I’ve been training my sons to serve as “relay operators” for me, and they have done quite well. With their help, I’ve been able to rescue several business phone calls from total non-communication. They also help me out in stores, telling sales clerks, “My mom is hard of hearing and didn’t understand what you just said.” Then they turn to me. “She asked you…[whatever.]” They are gracious and charming as my knights on shining armor, rescuing the lady in distress. (They learned it from my husband, who does the same thing in restaurants or at his work social functions.)

It finally occurred to me a few days ago: I used to joke, “I live on the phone! I have 'cauliflower ear' all the time!” I talked on the phone while I washed dishes, I talked on the phone while I made dinner (“Excuse me for a minute, I have to take something out of the oven, and I need two hands…”), I talked on the phone while I folded laundry, I talked on the phone while I was doing clutter control. If I felt any sense of alone-ness, if the silence in my house was beginning to feel stifling, I would pick up the phone and call someone. Sometimes it felt like anyone would do! Usually I could find someone who had a few moments to chat.

BUT...now, the phone is a threatening thing to me. Now, I sometimes cringe when it rings, hoping I can understand whoever is calling. Now, I hog the conversation on the phone in order to avoid having to listen…because I can’t understand the words I hear. Now, I take care of my business, and I get off the phone. Now, I tell people, “just send me an email; it’s so much easier than me trying to understand over the phone.” Now, I often heave a sigh of relief after a particularly challenging comprehension experience on the phone. And, yes, sometimes I also burst into tears.

This, I believe, is a major factor in why I feel so isolated and alone lately. I love the Internet and email and instant messaging (and blogging). But it is just not the same as the warmth of someone’s voice on the other end of the phone line. I really, really, really miss that. It is really, really, really hard.

If you are reading this, and you are one of my beloved family members or friends: thank you, thank you so much for the effort you put into speaking slowly and clearly, the patience you show in repeating yourselves over and over for me, finding different ways to say the same thing so I can piece bits together and get the idea. I sense you work hard at not getting frustrated or annoyed. But the frustration and annoyance I feel inside myself anyway turns into embarrassment or even humiliation when I just cannot hear. So…I do not call.

But I miss you. And I really hope and pray this cochlear implant will open this door of communication again, at least a bit wider, so I can welcome you back into my life again; so I can come back into your lives more fully again. You are precious to me.

clear CI information, for the layman

This is my favorite site that explains hearing naturally versus hearing with the CI. So if you want more information on how the implant works, what goes inside my head and what is outside my head, go visit http://www.cochlearamericas.com/Experience/13.asp

Let me know what you think! :)

Liz

I have a CI surgery date!

I finally have an officially scheduled surgery date for my cochlear implant: March 16, 2006! I am very excited (and impatient). I set the date to be a week before my school goes on Spring break. That will give me about two and a half weeks before I have to be back in the saddle and ready to teach. Then I will be the "walking, talking show-and-tell" at my school for the rest of the school year! Our school mainstreams deaf and hard-of hearing students (using cued speech), and several students have implants. The teachers have also said I provide them a valuable point of view as I talk about what it is like to be hard of hearing. (FYI: my school is at www.agbms.org and cueing is at www.cued speech.com.)

My surgery will be at Northwestern University Hospital in downtown Chicago. The surgeon is Dr. Alan Micco and the CI audologist is Pam Fiebig. I have chosen the Advanced Bionics Auria for my implant.

I will get the staples out about 10 days after surgery. If the incision is sufficiently healed, I could have my hook-up the same day. That means to have the external portion of the device attached so I am actually getting electrical stimulation of the auditory nerve. Until the external microphone, speech processor, and transmitter are attached, I am completely and entirely deaf in that ear. Then begins the long process of auditory rehabilitation, where my brain re-learns how to hear, using the electrical stimulation rather than auditory stimulation. That usually takes 3-6 months. Or more. Or less. It all depends. There are so many variables, there's no real dependable way to tell how long it will take ME. I've heard tales that, at first, voices sound like dings, or a fax machine, or robots or Donald Duck! I suppose I will have my own way to describe things, too.

Thank you for your love and encouragement throughout this whole process. In a way, it began back in 2001, when my ENT first suggested I might become a candidate for an implant. Or you could go back as far as 1992, if you count when I got my first pair of hearing aids and began to deal with a progressive hearing loss.

Please feel free to ask any questions! I love answering them.

Stay tuned!