Dear Rachel

I loved your letter and the way you advocate for yourself.

For those who haven't seen it, go here--http://cochlearimplantonline.com/blog/?p=90

Dear Dr. ——————,
I’m looking forward to being in your 20th Century Art History course this quarter on Mondays and Wednesdays at 8AM - 10:30 AM. I was born profoundly deaf, but I hear with an extraordinary technology, cochlear implants, and I hear like an almost normal hearing person. Because my hearing is still not perfect, I will have a few accommodations which include an assistive listening device. I will have a speaker near my desk and you will wear a microphone so that I can hear you well. I would like to meet you at least 15 minutes before class starts this Monday so that I can give you my accommodation memo and show you how to use the assistive listening device. Please let me know if this will work; otherwise we can certainly arrange a different time.
Thank you in advance,
Rachel Chaikof

By and large, I've found the majority of people really do want to accommodate us, however they often feel confused because they don't know what to do. I'm sure telling them about your equipment and what you'll need from them ahead of time goes a long way toward relieving their stress over having a deaf student in class.

I myself do this at work when we have subs or new coworkers. I know when they first learn I'm deaf, they're frightened of many things, but mainly they're afraid they will do something wrong to offend me by not accommodating me properly. Once I go over my needs, and how my equipment works I can see the relief on their faces. I also crack a few jokes, so they understand I'm not at all sensitive about my deafness.

It seems strange that we have to go to such efforts to relieve OTHER PEOPLES' anxiety, but I have learned this from the experts-- disabled people in wheelchairs. You see, since I work with the public I also sometimes feel nervous dealing with people who have special needs. If they seem comfortable with themselves and tell me what they want/need, I feel so much more confident with them.

We can't expect hearing people to bend over backwards for us without first explaining our needs. We must realize sometimes we are the very first deaf people they've ever encountered. They've seen all the stereotypical deaf people on TV and they find the situation frightening. They are wondering weird things. What will if happen if she starts signing? What if I need her attention and she can't hear me? What if I can't understand her speech? Why does she frown at me when I speak? Her hearing aid is making a loud noise, should I say something? (I have a tendency to frown at people who are difficult to lip read. It's a frown of concentration, not anger.) So I answer all these questions up front. I often show them a sign or two for fun. Everyone at my branch knows the sign for bathroom, for example. I tell them ahead that I frown when I don't understand their lips, and to pat me on the shoulder when they ask a question that I haven't responded to. This goes a long way towards helping them accept me.

You are on the right track with your letter.

It's interesting reading about your photography. My daughter also loves photography and originally thought she might major in art, or English. She couldn't decide. Then she took a psychology class and was hooked. She's in her fourth year of psych. It's going to be a long haul.

Deb Ann asked--

"By the way, why did the doctors say such things like that? Did they really graduate from college?"

I'm going to write about about my medical history in greater detail later, but I did want to give a short answer to this. From my experience few doctors know much about hearing loss. I think they must gloss over it in med school, because most doctors I've encountered seem only slightly better informed than lay people. General Practitioners and specialists other than ENT's might occasionally screen for hearing and make a diagnosis, but after that they send you to a specialist because hearing loss is over their heads.

Sometimes even ENT's know very little about hearing loss. For example the one I currently see for my sinuses specializes in sinus problems only, and has admitted he sends his patients with hearing loss elsewhere.

The only doctors I've met who seem to really understand hearing loss are otolaryngologists, which are ENT's who only see patients with hearing problems. Over the past 30 some years, I have seen four different otolaryngologists and three different ENTs in the Seattle area. The otolaryngologists all agree with my "idiopathic" diagnosis-- though they have thrown out several theories. After testing everything, they always attach a great deal of importance to my measles experience as a young child. All of them have said it was "probably caused by the measles." So just to simplify things, I tell most people the hearing loss was caused by the measles. As I said before, most lay people freak out and start telling me about specialists and giving me advice when they learn my hearing loss is "idiopathic" meaning cause unknown. After seeing seven specialists, I am satisfied with the explanation that sometimes "we just don't know."

Still, I see an otolaryngologist every few years, just in case any new tests have been developed that might give us a clue about why my cochleas don't work. The reason I have moved around between doctors was to see if any of them could come up with an explanation. It's good to get a second or third opinion. The first otolaryngologist I saw retired. He was old when I was initially diagnosed. The second one I saw has an international reputation, but a strange bedside manner. My husband still sees him for his Menieres, but he's definitely an "odd duck" and we laugh about his weird behavior sometimes. The third one I saw used to be in the same office as the "odd duck" then she moved somewhere else. The fourth was for a CI consultation. The reason for the different ENT's was because we moved and I didn't like the first one. It was clear he didn't have a handle on it. The second one retired, and the third one is in the same office as the second retired ENT, but he specialized in sinuses. Still, I like sinus guy's bedside manner very much and he's local, so I have all my hearing records sent to him. He is happy to refer to the otolaryngolgoists, and he is also connected to the audiologists I see, so it's a convenient relationship.

All of the audiologists in my office have their doctorate degrees in audiology too, but supposedly they can't diagnose biological hearing problems. They can only make a recommendation to see a doctor. Yet because they see hundreds of patients with hearing loss on a regular basis I find them very well informed and trust their opinions and recommendations much more than my GP.

The doctor I saw last week was a neurologist, and he's got an excellent reputation. He is the second neurologist I've seen about my migraine headaches. The first one had me on too many drugs and didn't seem to be listening to me when I said I didn't like these drugs. So I decided to see this other guy who my husband has seen about his Menieres when they were first diagnosing it. Neurologist number two has already changed my prescriptions to two drugs I tolerate better. This is the reason I haven't been blogging as much. I'm just feeling better and I'm busier.

I have mentioned I wanted to get my headaches under control before even considering the hybrid CI. So that's where we're at with the doctor situation.

Like you DebAnn I think it's weird that specialists could know so little about hearing loss, but the ears are a complicated organ. Few doctors run into idiopathic hearing loss in the general population. The only ones who see it often are otolaryngologists who deal with deaf/hh people all the time.

DING! DONG! The Witch is Deaf!

Last week I blogged a little about my frustrations with bus drivers failing to notify me visually when we were about to approach my bus stop. If you missed that, I'll recap a little. I always tell bus drivers I'm "deaf "or "very, very hard-of-hearing" when I board. They always assure me they will let me know when my stop is approaching, then they don't. I had been dreading this bus ride to the neurologist ever since I made the appointment last month. Thought I would update you.

Several of you suggested writing a note, and I thought that was a great idea. I'm not really all that bus savvy because I don't ride the bus on a regular basis. Except for the opera and other special events, I avoid Seattle whenever possible, and usually someone else drives. BUT-- I had to write down all the stops, route numbers, streets, transfers, and alternative schedules on a piece of paper anyway. So I flashed this at the bus driver when boarding, while announcing I was deaf, or "practically deaf" at the same time.

Using the modifier 'practically' in front of the word 'deaf' helps hearing people to understand why I can speak even though I'm deaf. It's like saying, "I'm not really Deaf, I'm just merely deaf." A song from the Wizard of Oz, "Ding Dong the Witch is Dead" plays in the back of my mind whenever I utter these words -- the line the coroner sings when he pronounces the wicked witch deceased,

"As Coroner I must aver, I thoroughly examined her. And she is not just merely deaf, she's really most sincerely deaf!"

Then the Munchkins chime in with their chorus-- "Ding dong the witch is dead! Lalalalala- lalala- lalala lalalalala-la-LA!LA!" This is really true! That's how my mind works.

So I rode on the bus to the Emerald City with Oz songs playing in my head. Did y'all know that's Seattle's nickname? Emerald City!

I knew where I was getting off the first time. The second driver was great. He simply said it would be the second stop after we got downtown, so I didn't need anything further from him. The third bus driver said he would tell me when it was my stop, but it turned out to be a long drive and I began to get nervous after a time. I asked a woman next to me to let me know when my stop was coming up, then she had to get off. As more and more people got up to leave, I was able to move forward. Finally I found a seat close enough to the bus driver to see his lips. When he got to my stop, I saw him announce it. I was just getting my stuff together when he turned, pointed, and nodded at me. I was surprised he didn't forget. The ride back went about the same with me telling the drivers, pointing to my list of routes and streets, and trying to sit in a spot where I could read the drivers' lips. One time a passenger over heard me tell the driver I was practically deaf. When we got into the right part of town, he told me my stop was coming up before the driver announced it. So all went well.

NOW-- the OTHER thing I wanted to mention. . . I don't know if this happens to many of you, but whenever I see a new doctor he or she always wants to know about my idiopathic hearing loss of course. It seems whatever is wrong with me, they feel it might somehow be related to my loss of hearing. There have been times I've been visiting the gynecologist and had to explain the hearing loss in great detail, as if that might have something to do with my vagina. It doesn't!! My hearing loss also has nothing to do with my teeth, eyes or moles that need to be removed. But it doesn't matter. Every doctor always wants to know all the fascinating details, and then I can see the gears turning. . . Next they wonder if my hearing loss has something to do with the other aches and pains in my body. When I explain I have had a progressive hearing loss since childhood, they want to know WHY. The appointment ends up being about my hearing loss and not the thing I went there for.

No one knows for sure WHY. This is not all that uncommon with hearing loss. That's why there's a name for it -- "idiopathic" -- which means the cause is unknown. I have been to several specialists over the years who have come up theories-- the most common being that it was caused by the measles when I was young. "Measles" is only a theory, not fact, because the hearing loss could have been caused by some other auto-immune disease, or maybe even drugs given to me when I was sick. No one knows. While I realize most lay people might find the concept of "unknown cause" unsettling, I should think a doctor would understand. Yet, time after time I find myself explaining to doctors how it is that I have a hearing loss of unknown causes.

And even STILL-- after all that -- the doctor wants to know who is currently "treating" my hearing loss NOW-- as if there's something to treat. How can an otolaryngologist "treat" a hearing loss if there's no known cause? Also, last I heard there was no treatment for permanent hearing loss. Most doctors must know that, right? So what is there to treat????

This whole line of questioning leaves me baffled, and it's another reason I hate to see new doctors. Last week's visit to the neurologist was no different. Because, as usual, I explained all that, then he looked at me askance repeating skeptically, "So! You have a hearing loss, but no one knows why?"

Me-- "That's right." (Oz tunes beginning again. . .Lalalalala- lalala- lalala lalalalala-la-LA!LA!)

I mentioned names of otolaryngologists I've seen in the past, and that seemed to satisfy for the time being, but honestly I haven't seen a doctor specifically about my hearing loss in quite awhile--except for the one who tested me for the cochlear hybrid last November and that was no more than an audiology exam and consult. He isn't "treating me."

Here are the lyrics to the song playing through my head on the bus ride--


Munchkins: Ding Dong! The Witch is dead. Which old Witch? The Wicked Witch!

Ding Dong! The Wicked Witch is dead.

Wake up - sleepy head, rub your eyes, get out of bed.

Wake up, the Wicked Witch is dead.

She's gone where the goblins go, Below - below - below.

Yo-ho, let's open up and sing and ring the bells out.

Ding Dong' the merry-oh, sing it high, sing it low. Let them know The Wicked Witch is dead!

Mayor: As Mayor of the Munchkin City, In the County of the Land of Oz, I welcome you most regally.

Barrister: But we've got to verify it legally, to see

Mayor: To see?

Barrister: If she

Mayor: If she?

Barrister: Is morally, ethic'lly

Father No.1: Spiritually, physically

Father No. 2: Positively, absolutely

Munchkins: Undeniably and reliably Dead

Coroner: As Coroner I must aver, I thoroughly examined her. And she's not only merely dead, she's really most sincerely dead.

Mayor: Then this is a day of Independence For all the Munchkins and their descendants

Barrister: If any.

Mayor: Yes, let the joyous news be spread The wicked Old Witch at last id dead!

Coolin It In The Southwest

There's nothing that says Southwest quite like men with cowboy hats and hot sauce. I just had to take a picture.

Below are some real old time cowboys reenacting the gun fight at the OK Corral in Tombstone, AZ. The one on the right played Wyatt Earp. I thought he was HOT. The real Wyatt Earp was quite handsome just like this guy.

I had a hard time finding vegetarian food in the Southwest other than spicy beans. I'm not a big fan of beans. The two times I ordered "veggie burgers" they served patties made of out black beans and hot peppers. I prefer soy burgers without peppers. People in the Southwest like to cut the heads off bulls and other animals, then hang them up for decoration in their restaurants and other places of business. This reminds them never to eat beans combined with hot peppers. Black beans and hot peppers cause gas, diarrhea and indigestion. That is why people in the Southwest always eat meat.



We went for a short hike in the White Tanks to see wildflowers in bloom.

The tall cactus here is a saguaro, and the smaller pinkish one on the left is a barrel cactus, I think. The saguaro is smallish and may not be that old cuz it only has one nicely developed arm. Arizona had a lot of rain this past winter, so the desert started blooming earlier and was more spectacular than usual. I think the yellow flowers below might be Mexican poppies, and the blues could be some kind of blue sage. But I'm not an expert on wildflowers of the Southwest, so if you know the names, I would appreciate the correction. I loved the different colors against the pinkish rocks.

Waiting Forever At the Blinkin Doctor's Office

Today I had a follow-up appointment for last month's surgeries. The doctor wanted to know how I was doing, and to make sure all my incisions had healed. I had never been to his office before since both surgeries were emergencies.

After filling out all the paperwork I told the receptionist, "I am deaf. I will not hear the nurse when she calls my name. Please tell her to tap me when it's time to see the doctor."

"OK--I'll mark that here in your folder," the receptionist said.

I waited forty-five minutes, then went back up to the desk.

"You didn't come when we called," she said.

ARRGGGHH!

This has happened in other offices so many times I could scream. I have another doctor appointment on Thursday. Do you think anyone would notice if I wrote DEAF in big black letters on my forehead with a Sharpie? Not that I plan to mark up my face, but does anyone have an answer for this?

I have a pair of fun Halloween Jack-O-Lantern blinkers that I put on my head for our Trick-or-Treaters each year. I've been thinking maybe a pair of Deaf blinkers would help remind medical staff they have a deaf patient in the waiting room. The Deaf blinkers could also work on the bus to remind a bus driver he needs to wave at me when it's time to get off the bus. (See previous blog.)

I have never seen Deaf blinkers, but I'm thinkin two great big yellow ears on floppy springs with the words Deaf! written on top. Or maybe since Hearing people like the ILY sign so much, two floppy, blinking ILY signs with DEAF written across each hand. OR blinking red LIPs would be another great symbol of deafness, since many of us read lips. . .OR maybe instead of blinking things on the head, how about a beautiful blinking pendant?

Deaf people need something that's internationally recognized as a proud symbol of deafness, similar to what the blind have with their white canes.

It's just a thought.

Free Deaf Bus Fare

I live in the woods east of Seattle. (Yes-- that's my front yard.) When we first moved here, black bears used to wander into our yard sometimes. Then some acreage behind us got developed, and we only see deer or coyote now. We've recently been reclassified from rural to "suburban," but most the roads around here are still windy and have only two narrow lanes. One of the roads on my commute routinely floods during a good rain, so I have to brake for confused salmon flopping their way across blacktop.

I have lived in the woods most my life. I can dodge deer, flopping fish, and downed trees in the road with a logging truck on my tail no problem, but put me in heavy
traffic and I become a nervous ninny. So, if I have to go to Seattle-- which is sometimes necessary because all the best doctors are downtown-- I take a bus. Over the past couple decades, Seattle has steadily grown to the point it is now rated among the nations worst traffic cities for gridlock. Gridlock Alert: Five Cities With the Worst Traffic.

Public transportation is free for disabled people in King County (Seattle-metro). But here's the glitch. In order to get the "free" ride, I have to tell them in my perfect Hearing voice that I am deaf. I have to tell the driver anyway, because I won't hear him call out the stops where I need to get off. I go into Seattle so infrequently, I don't recognize street corners by looking out the window. Usually I get on the bus and tell the bus driver, "I am deaf and need to get off at 5th and Cherry (or wherever). Could you please wave at me when we get there? Because I won't hear you."

"Sure." he'll say.

It never fails. We hit 5th and Cherry (or wherever I need to get off) and he "forgets" to wave me down. He finally remembers a stop or two later.

"Oh NO, I am SO sorry!" he'll say. "I forgot!!! You don't seem like a deaf person. Fifth and Cherry is seven blocks back that way. . .I'm SOOOOO sorry!!!" (I wonder how a d/Deaf person is supposed to 'seem', but I know what he means. We are not supposed to talk, or we're supposed to talk "funny" and make wild gestures like d/Deaf people do on TV.)

This has happened at least. . . five times now, which is how I learned it's best NOT to talk when I get on a bus.

It's better to hand the driver a note. I feel like such a phoney. Worse, handing the driver a note reinforces the D/deaf stereotype that D/deaf people are all mute. But when I hand the driver a note, it helps him to remember he has a D/deaf person on board who needs to be flagged at a stop.



When we get to Fifth and Cherry, he smiles, waves and winks. The note has served its purpose. I sign 'thank you' as I leave, and say a silent prayer of gratitude that the bus driver wasn't a CODA, and that no one on the bus recognized me or started a conversation.

Wouldn't that be embarrassing? How would I explain that yes, I COULD talk and No-- I'm not fluent in ASL, but I really AM deaf, just not Deaf, but LATE-deaf. . .and I was faking being non-oral because the last five drivers forgot to flag me. . . Or maybe I could tell a little white lie-- I'm Late-deaf AND I have laryngitis! No-- this wasn't a ruse to get out of paying bus fare. . .

Or maybe I should carry copies of my audiogram to prove I can't hear, just in case someone catches on that I can really talk? That's assuming he could read an audiogram. It's an awkward position. I have to go downtown at the end of this month for an appointment at Swedish Hospital with a neurologist, and I'm already stressing over it. The ride is boring.



Two bus transfers between here and there. SIGH.



Maybe I should drive. . . But our traffic here in Seattle is horrid. . And I would have to pay for gas and parking. Not to mention finding a spot to park, which is a nightmare in itself.

Yes Mike, I get it.

Yes Mike, I understand.

I have this deaf friend I practice ASL with. Her name is Kate. We meet every so often for lunch at this shopping center where there are a bunch of different restaurants. Normally we go to an Indian place and sometimes we go to an Italian place, or a Thai place. Recently we found a deli we like.

Usually, Kate does all the "oral" talking to the wait staff to give me an opportunity to sign as much as possible. Additionally she does hear a little better than me-- or maybe she lipreads better-- I'm not really sure. Our audiograms are almost the same, but she was born deaf and I have had a progressive hearing loss for over thirty years. She grew up having oralism forced on her, then picked up sign later after she moved away from her parents. We're both part of the Hearing world now. We have Hearing families. We talk. But we're deaf too. Neither of us wear our hearing aids at home, and we enjoy not wearing them when we're out.

I was told by my audiologist when first diagnosed that if I had been born with deafness I would not have learned to talk well. Hearing aids just weren't that good in the late 50s/early 60s, so most people my age who were born deaf have some deaf speech. It has nothing to do with intelligence-- as YOU know. Newer hearing aids are much better and younger people have had better correction. Doctors who know anything about hearing loss can look at my audiogram and know I wasn't born this way because of the way I talk.

Anyone who knows anything about language acquisition knows it's the same when learning foreign languages. For example, I have a friend Iwona (pronounced Ivona) who grew up in Poland. When she moved to the US, she spoke five languages fluently, but not English. She said she will always have a foreign accent when speaking English because she learned English too late in life. (I've talked to others-- a friend from Yugoslavia and a few others who have said the same thing) In order to speak a language with no foreign accent, you have to learn it before age fourteen-- give or take a few years. There's a reason for this I won't go into here, but the same concept applies to deafness and speech. If you hear well when you're young, most likely you'll continue to speak like a hearing person all your life even after going deaf.

So, back to Kate and I on our outings-- it often goes like this. . . We'll walk into a place for lunch. Maybe there's a crowd of people. We will start signing and decide if we want to eat there. "Do you want to eat here? Looks crowded. Ask how long the wait is. . .." Finally, she'll go up to the desk and ask orally how long of a wait. At the same time she tells them we're deaf and we won't hear our names called. Then she comes back to explain in sign it's a fifteen minute wait or whatever, and we're third on the list. . .

The wait staff stare at "the two deaf signing women" and assume from this exchange that I'm non-oral because Kate has done all the talking. They only see me signing, never talking. Sometimes they seat us right away despite telling us there would be a wait. I'm not sure if it's because they feel sorry for us, or if they're feeling extra charitable or if they simply don't want signing women in the lobby.

Sometimes if we're standing outside on a street corner signing, cars will slam on their brakes so we can cross the street. This NEVER happens to two hearing women standing on a street corner chatting. I think maybe the flying hands gets driver's attentions. But also I believe when people see ASL and flying hands, maybe they fear we'll suddenly jump out in front of their cars.

The time that really made me burst out laughing was in the Thai restaurant. As usual, Kate did all the talking. She even ordered orally for both of us. When the waitress asked if I wanted my tofu fried or baked, Kate asked me in sign, I answered back in sign, then Kate relayed this information to the Thai waitress. I simply needed the practice, which is why I didn't speak. Also I couldn't understand the waitress's accent and Kate does hear a little better than me, or maybe she lipreads better. I'm still not sure. Kate also asked in sign what I wanted to drink in front of the waitress, and then told her I wanted water.

We spent the rest of our lunch happily signing away with the waitress coming by to ask if everything was OK a couple times and Kate assuring her we were fine. When it came time to leave, I mentioned to Kate in sign that I needed a box because I couldn't finish. Kate couldn't finish either. She eats like a bird. She probably had twice as much food left on her plate as me. In two HUGE heaping mounds. She waved the waitress over and asked orally for boxes for our food.

The waitress was so kind. She came back promptly with two boxes in hand and smiled benevolently at me first. Then she began dishing up my leftovers into the box. I felt just a little foolish. I am capable of placing my own leftovers into a box. But when I made a move to take the spoon, she pushed my hand away and smiled again. Maybe this was how they did it here at this Thai restaurant, I thought. Such GREAT service!! So I allowed her to spoon up the leftovers, and watched as she gently closed the lid, placed the box into a plastic bag, then tightly knotted it twice for safekeeping. Meanwhile Kate sat there, with her box and heaping plateful of food, waiting for the same special service--- that never came. As soon as the waitress finished with my box, she turned on her heel and left. The look on Kate's face was priceless. There she sat with two humongous mounds of food left on her plate and an empty box. No special treatment for her.

I guess the waitress decided Kate was capable of dishing up her own food. After all, Kate could speak. You have to wonder what they think sometimes-- Hearing people. That you need a voice in order to dish up food? I don't get it. But that's when it hit home how different the world is for culturally Deaf people.


We haven't been back to the Thai place, even though the food was good.

Yeah-- I get it.

Treasure Award/ Blogging for Beck

This is long overdue, but I wanted to explain about the Treasure Award that has been on my blog for the past few weeks. A friend awarded it to me. What a shock because I treasure her blog more than she knows! Her "Blahg" is listed in my favorites to the right under "Melissa."


The idea was to pass it on, so I passed it on to Abbie of Chronicles of a Bionic Woman. She blogs with such intelligence and wit about her life with a cochlear implant. I always learn something new. Go there-- learn and laugh.



Next I wanted to mention a third blog in my side bar, Beck's Blog. Beck struggles with NF2 -- a rare debilitating condition that causes late-deafness due to tumors forming around nerve tissue. She hears NOTHING, so she learned ASL as an adult-- not easy when you grew up hearing. NF2 also affects the eyes and spinal cord. Additionally, Beck is a survivor of Hodgekin's Lymphoma, a rare cancer. She is one of the most inspirational people I know. Like the energizer bunny, she just keeps going and going. Currently she's training to climb up the tallest skyscraper west of the Mississippi, the Columbia Tower in Seattle. This is no small feat given all her challenges. She's hoping to raise money for the Leukemia and Lymphoma Society. If you would like to donate to the cause, here's a link http://www.active.com/donate/2008bigclimb/bc08RDufek and there's another link below. Contributions are tax deductible.



Her sister wrote this beautiful message about her that I can't top so I won't:
Every morning, the ritual starts from the top. Eye drops first, then a moment to collect herself before getting out of bed. When she does, it’s slow going, reaching out for bookcases, furniture, and door frames to stay upright on the long trek to the bathroom. Constantly growing brain tumors have plucked many things Rebecca Dufek (DeGrand) once took for granted: her tears, her hearing, and her balance, just to name a few. But this story isn’t about what was taken. It’s about what Rebecca is giving to and getting back from life. Even though every day for her brings a new set of obstacles, she’s taking on challenges most people never dream of. In the process, she’s changing countless lives one step at a time.


An avid diver and hiker, Rebecca and her then-fiancé packed up their things in a small trailer and headed west in 1996. From Escanaba, MI to Seattle, WA, they moved to a land of mountains and water to quench Rebecca’s thirst for the outdoors, but her dreams were about to be scaled back.


“I had wanted to be a mountain climber but I waited too long and lost my balance function before ever having a chance to do those things,” Rebecca said.
Rebecca lives with Neurofibromatosis Type II, or NF2, a disease where brain tumors attach themselves to vital parts of the brain and are difficult or impossible to remove. They continue growing and causing more problems as they crowd out things like the auditory nerves, causing deafness, facial nerves, causing paralysis, and in Rebecca’s case pinching her brainstem, causing a myriad of problems including a loss of equilibrium that makes common daily tasks like descending stairs daunting. Multiple brain surgeries are inevitable. She underwent her first open brain operation in September.


“It took 8 years to accept that [I couldn’t get out of having brain surgery] and prepare for it while the tumors grew,” she said. The way she prepared was by forcing her body to stay active and in shape, even as the tumors were making those activities harder and harder.
“All surgeons say that it is most ideal to go in [physically] strong to better your chances of getting through the surgery and having a successful recovery,” Rebecca said, “So that is how I get the best quality of life available to me; I train to be a survivor.”
Now, only 5 months after that surgery, she’s on a mission to climb Seattle’s highest skyscraper.


The Columbia Tower stands at 69 floors (that’s 1,311 steps) and Rebecca’s two-person team will climb the building on March 16th for the Leukemia and Lymphoma Society. The event is called the Big Climb, and attracts thousands who climb the skyscraper each spring, raising money to fight blood cancers. For Rebecca, it’s also a personal journey to help others like her; other cancer survivors, that is. She has also been in remission from Hodgkin’s Lymphoma for 15 years this May. She is among only a handful of people in the world to survive cancer and then be diagnosed with NF2.


But none of that has stopped her from her quest to make a difference for others however she can. Rebecca has already done numerous running events to benefit NF2 research, the American Cancer Society’s Relay for Life, and she walked the 2006 Seattle Marathon with the group Team in Training, raising almost $3,000 for blood cancers. She also climbed the Columbia Tower for the LLS last year, not long after her grandfather, Clarence DeGrand, passed away from a blood cancer called Myeloma.


“When I reached 49 floors and there was a sign for 20 floors left to go I started hooting and hollering,” she said, remembering the experience, “When I reached the top and the sunlight poured in from the picture windows in the tower it was a heavenly feeling. I felt closer to Grandpa and was overwhelmed with happiness.”


This year’s climb is also dedicated to her grandfather, and in part because of his spirit, Rebecca plans to continue her athletic and charitable ways as long as she can. However, she knows better than most how quickly the abilities you take for granted can disappear.


“With NF2 you don't know how long it is going to last, so I like to grab opportunities when they come and not let them slip by,” she said, “I am addicted to the highs of life. In all the things I have been through, cancer and brain tumors, it makes me feel alive and that I am living [life] to the fullest by doing such activities [as climbing and hiking].”


“At the same time I am also doing them for an important purpose,” she added, wondering aloud why anyone with the ability to help wouldn’t put forth an effort, “We all have a personal responsibility to contribute to the common good and to society… It is basic humanity.”
The morning ritual is now over, but the day ahead brings many more. Today is training day. Rebecca tells me that living with NF2 makes every day a training day of sorts, but knowing she’s training for others makes her more eager to get up and do it all over again the next day. She finally makes her way carefully down the stairs. That’s when our eyes first meet on this chilly, Seattle morning. Since she is deaf, I’ve been standing outside peering into her living room window, waiting to catch her attention. She greets me with a wave and an enthusiastic grin. It’s time for us, two sisters, to train for the Big Climb.


So far, we are the only members of a team Rebecca aptly named “High on Life.” Her experiences dealing with everything life has to offer, good and bad, have given her an amazing appreciation for the complex journey that it is. That spirit has rubbed off on me, too. Although our team is small, we both know we are a part of a much larger team of people making the effort to save lives.


“Thankfully there are others who feel the same way that I do and that is why I am here,” she says of those who came before her and allowed research into Hodgkin’s Disease to save her life, and keep a sister in mine.


“Now it is my turn to pick up the torch and carry it for someone else,” Rebecca added matter-of-factly.


I’m proud to be Rebecca’s sister, and even more proud to know that our efforts could allow others to survive and understand that high on life feeling. Who knows, our little team could spur someone to make their own contribution. That may not mean climbing mountains, or even skyscrapers, but just making a difference where and how you can. My sister Rebecca holds a wonderful quote by writer Sydney Smith close to her heart:


"It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can."


In the end, it could mean everything. It has for my family.
If you’d like to donate to the 2008 Big Climb, the High on Life team page can be found at
www.active.com/donate/2008bigclimb/HighOnLife. Better yet, if you or someone you know lives in the Seattle area, feel free to join our team or create your own

Dealing With IT-- Part 2

I covered humor and standing tall, but I failed to mention WHY you need to stand tall when you are d/Deaf. There are times-- and we all know it happens very occasionally-- but it happens to all of us that people are rude for some reason. You might call them audists. I simply call them a**holes. These are the people who make discourteous remarks about your deafness, as if they think you purposely developed d/Deafness solely to annoy them. We've all been there from time to time.

Or perhaps you are NOT a d/Deaf person. Maybe you struggle with some other issue. Maybe you are Gay and other people feel awkward about that for some unknown reason. Or maybe you're a vegetarian, or a Wiccan just minding your own business. Some people can't handle others who do things differently, so they say mean things. They feel threatened that you live your life another way. Or maybe you are a deaf person who prefers to speak, and other Deaf people can't stand it that you like to use your voice. Or maybe you are a Deaf person who prefers NOT to speak, and other deaf people can't understand WHY you won't talk. Why can't people just let everyone else live their lives in peace?

The problem for many of us is we didn't grow up "different." Everyone knew where our boundaries were, so we never had to assert them before. When you develop a difference such as a disability, (or even change religions or discover you are Gay) it's a new thing to have to assert your boundaries, and it may be uncomfortable for those of us who dislike conflict. Other people assume things about us based on what they've read about others in our minority group or movies they've seen. They stereotype us because they may be afraid to ask personal questions. This is why I suggested the humor earlier, to help others feel comfortable with your situation. It helps them see you're open about it. Some people just can't accept differences though.

Ever since I became a vegetarian a cousin teases me about how carrots "scream when
they're ripped out of the ground." Then she mimics them screaming in pain while I'm trying to eat my dinner. Of course the other meat-eaters laugh hysterically. It's especially annoying to me since I never tell omnivores what I find so repulsive about cattle and chicken farming. Whenever anyone asks, I tell them they don't want to know. I figure anyone who really wants to know can google it themselves.

Whatever it is that's "different" about you, the reason you need to stand tall is so when someone becomes an a**hole about it, you can adopt your FU look. I'm speaking personally about being d/Deaf or vegetarian, but I think this should work for Gays or Wiccans or Buddhists or people who have toenail fungus even -- whoever gets picked on. You'll need to perfect this look in the mirror until you have it just right. My late-deafened friend Jan mentioned it. She has it down pat.

You already have your shoulders straight. You've been smiling and cracking jokes. Jokes are a great ice-breaker and they show you have a sense of humor and that you're an open person. After the a**hole makes his/her remark, you will need to lift your eyebrows in shock, then give the a**hole the beady eye. (Look at the kitty.) Purse your lips and flare your nostrils as if you smell something putrid at the same time. You've been waiting for this moment, so you've practiced the look. It's also nice to have a couple of sarcastic come-backs up your sleeve, but the look should be enough. Since it's a stare down, you will not look away first. At some point, the a**hole will ask, "What you lookin at?"

This is when I might ask my cousin if she's done with her carrot act. Perhaps she'd like to be a turnip next? If the issue is your deafness, sometimes a simple statement such as, "I'm deaf. Deal with it," is enough. Trust me, they won't mess with you again.

There is no shame in disability or being different. When you stand tall, you force people to respect your boundaries. They sense your confidence. You don't have to take crap off anyone.

Dealing With IT

Today while I was sitting at the my library desk, once again I had to ask a little girl with the softest voice to repeat her question three times. Then I asked her to write it down because I couldn't make out one thing she said. Her lips barely moved. When I told her I was very, very hard-of-hearing (I never use the word "deaf" at work) and then asked her to write, she exchanged unsure looks with her friend before she took up the pencil and paper. I felt badly about being a weird library lady who couldn't hear. But there was no other choice. Worse, I'm not even a librarian. It turned out she wanted information on the "Thirteen Colonies" She was at the wrong desk. I only help with computer or circulation problems. So I had to send her next door after all that. I could have pointed her in the general direction of 973 American History. I do know the Dewey decimal system. But that's not my job and I had a line. (SIGH!) If she only needed help with a computer!

This past week three blogs hit me. Mike's blog, Abbie's and SpeakUp Librarian's. While Mike isn't late-deafened, he discussed adversity. I like Mike because he walks to the beat of his own drum, and he's a fighter. I don't doubt these qualities have helped make him become the success he is today. The way I see it, there is only one way to deal with the hearing world when you become deaf -- and that's head on. You can't beat around the bush and pretend you're hearing. If you are going to deal with Hearing people, you can't hide in your own little community of non-hearing people. I have lived too long among the Hearing to do that. I can't run away from them now, though there are times I'd like to.

Then there is Abbie who lost her hearing young, and at a critical time for a young person-- at the beginning of her career. But she got right back up and kept going without hardly skipping a beat. I'm amazed at her resilience. What a strong person she is!

What about Sarah-- the SpeakUp Librarian? Losing your hearing during midlife-- ah-- that's rough. You can't start over with a new career. She's in public service, using the phone. Like me, she's up to her ears in the hearing world. I know how it is in libraries. People whisper their questions. Sometimes you just want to scream "SPEAK UP!" The questions they ask can be so random and off the wall-- "How do I make that salt solution my doctor wants me to sniff up my nose?. . . I saw someone make a pie on TV and I want the recipe. . .I need someone's phone number in Ireland. . .What are the prison conditions in China?" I am happy to send all those questions to a librarian. Please God, just give me a computer question. Computers are easy. When you don't know the answer, you can blame it on a. . . . "computer glitch." Librarians have to listen carefully. I know exactly what Sarah does. Talk about daily adversity.

During my last job interview my current managers asked, "What are you most proud of in your life?" A lot of accomplishments came to mind, but when I really thought about it everything paled in comparison to meeting the daily challenges of living with a hearing loss. That was my answer. "Every day I face communication challenges and yet I've been able to live a relatively normal life and function fairly well." I'm really proud that I just lead a normal life despite the fact I'm disabled. Later, I thought maybe I blew it. WHY of all things did I talk about my disability?? OH GOD! How could I be so STUPID?! But I guess they liked my answer or other answers, because they hired me. When Sarah blogs I see a lot of myself -- the honest appraisals of her situation. Maybe it's because we both have progressive hearing losses. When you're late-deafened with a progressive hearing loss your condition is constantly in flux. You can't help but always be aware of it, and therefore maybe more focused on how you're coping.

Being deaf requires inner strength and develops character. I'm emphasizing little d-deaf. As a late-deafened person, I consider deafness a disability. All disabilities require inner strength and develops character. I'm not speaking for Deaf people who don't think of their Deafness as a disability. (I won't debate whether Deafness is a disability, I'm not Deaf, I'm deaf.) Being Late-deafened IS a disability for so many, many reasons-- but mostly it's because you lose the ability to communicate in the language you grew up with. If you grew up Deaf using ASL, maybe it's not a Disability. I don't know. I don't care. I'm late-deafened.

So getting that out of the way-- I'm going to back up. Any time a person is part of a minority, they end up in the uncomfortable position of being stereotyped and judged by others, and sometimes having to speak up for their rights. Though it IS quite normal to be black, or Jewish, or blind, or Gay, or deaf, the rest of heterosexual white, Protestant people believe you are "abnormal" when they find out you are part of a minority group. I can say this with some authority because I am a WASP. Disabled (deaf) = abnormal to the "normal" people. Unless there's some outward sign of your abnormality, the information that you're different can either irritate or rock their worlds. As a deaf person, I never know what kind of response this information will elicit, but you can bet there WILL BE some kind of reaction. No one ever just says, "Oh?" The trick is to convince them that yes, I AM abnormal, but in a normal kind of way. . . sort of.

If you're a shy and private person who used to be "normal" like I used to be, telling people you are no longer "normal" can seem awkward. It takes practice. Timing is everything. I used to stand in front of the mirror practicing my posture while delivering this information. I thought it was more graceful to stand proud. Katherine Hepburn would have stood proud and I always admired her. Eventually I learned to joke about it. This is what I mean by character development. I have an entire slew of jokes now. It's a strange thing about disability, but I have learned that OTHERS are uncomfortable when I tell them, so it's better to put THEM at ease. So yeah-- it's good to stand tall and above all to look comfortable and even joke. You never, ever, ever want to look embarrassed, because the others will then feel really uncomfortable with your disability.

What I used to have the most trouble with when announcing my disability was sometimes I felt like maybe it looked like I wanted special treatment or sympathy. That couldn't be further from the truth. The LAST thing I want is sympathy or special treatment-- other than I really like everyone to treat me special. This is why jokes are so handy. It takes practice. When do you tell people? Right away? Not right away? How do you tell them? . . . It all depends on the situation. There's no pat answer. You have to wait for the right opening. But it must be done, and it must be done well. Because if you do it the wrong way, then you risk making the other person uncomfortable. You want them to laugh so they won't feel sorry. But you don't want them to feel uncomfortable about laughing. You can't just blurt it out.

I've been lucky. I've been blessed to know some special people. I keep a mental list of people who have changed my life. I was going to list several people I know in my community who have various disabilities. Three are in wheelchairs with limited movement of hands, legs and inability to talk well. Some are disfigured, some are mentally disabled. Then I realized if I started listing people, the blog would become way too long because there are too many people to list. These people have taught me things about managing disability, and life in general. Sometimes I think God set them right here for me to meet so a light would go on in my dim little brain. But mainly what I came to realize years ago is a lot of people live really hard lives and they live their lives far better than I do. And I'm in awe. The inner beauty that shines through. The poise, grace, courage and aplomb it takes just for some of them to get up out of bed --- and then they smile-- at me. I feel lucky to have known people like this.

Mike mentioned in his vlog that most of us will become disabled someday. And that's true. Statistically, 7 out of 10 disabled people weren't born that way. Being healthy is only temporary. One out of three people over sixty-five develops hearing loss. We're all on our way to disability. As one friend with MS put it, the only difference between us (those who are already disabled) and them (those who aren't) is we already know what we're dealing with. We're used to being "abnormal." For the rest of them, disability will come as a shock.

I truly don't mind being deaf. Sometimes I do miss hearing things. Especially music. But there are worse things. WAY worse things. Like having both your parents and your dog die, getting cancer for the second time, and your husband announcing he wants a divorce after 25 years of marriage all within six months of sending your youngest child off to college. That happened to my friend Dar four years ago, and her life couldn't be better. Yet, I do not mind being me and I'm sure she feels the same.

Lets Stop Bein Crabs

The only alternative to coexistence is codestruction.-- Jawaharlal Nehru

Yesterday I left this comment in John's blog, Children of the Eye. I've modified it somewhat.


"I would like to suggest that someone needs to clarify some rules of respect (within the d/Deaf/hh community.) I realize we can't have a d/Deaf/hh police. We'll have to take it on ourselves to monitor our own comments and maybe talk to our friends when they speak out of line.

1)NO deaf/Deaf/deaf-blind/HH person should ever criticize another deaf/Deaf/deaf-blind/HH if their English skills are lacking when that person makes an effort to subtitle his/her vlogs or writes a blog or transcribes a vlog. This is unproductive and only serves to divide our community.

2)Likewise, no deaf/Deaf/deaf-blind/HH person should criticize another for having poor ASL skills –especially if that person is late-deafened or oral deaf and grew up without the benefit of ASL — because criticism is unproductive and only serves to divide our community.

3) No one–deaf/Deaf/deaf-blind/HH/oral deaf should criticize anyone’s speech. Again this is unproductive and only serves to divide our community.

4) Let us recognize that people within our community may prefer to communicate differently. Some prefer ASL, some prefer to cue, some prefer to speak orally. Our preferences for how we communicate involve many factors. Often communication choices were made for us when we were small, or in the case of late-deafness, lack of exposure to the D/deaf/hh community made it difficult to become fluent in ASL. The preference or ability to speak has nothing to do with being “uppity.” Our reasons for speaking are personal and varied, just as our reasons for NOT speaking. It is simply how we have chosen to manage our d/Deafness or hearing losses within our own personal environments.

5) Let’s recognize that speech has nothing to do with intelligence. Writing has nothing to do with intelligence. The fact that someone grew up hearing does not mean that person thinks he or she is better than everyone who uses ASL or can’t speak and/or write well.

6) Let's realize that we DO share many common bonds. We need to make it our goal to build on what we have in common in order to strengthen the D/deaf/HH community.

Can we all just RESPECT each other??"

It's bad enough when Hearing people don't respect us. Personally I think it's despicable when we don't respect others within our own community. Hurtful behaviors such as should never be tolerated against our own.

To be honest I understand why some of you don't want to write, transcribe or caption your vlogs. I get it. People have laughed at your writing and made you feel like idiots. I understand this. You wanna know why? I'm scared to death to ever sign in front of any of you-- because I'm a beginner. I'm afraid people will laugh and think I'm an idiot. And guess what?? Some of you have criticized others whose signing skills weren't what you thought they should be, so my fear is not completely unfounded. How do you think that made me feel as a beginner when I saw some of you criticize another beginner? I felt sooooooooooo discouraged. I felt like I would NEVER be good enough at ASL to suit some of you, and maybe I should just throw in the towel now instead of making a fool of myself.

Respect goes two ways.



That old crab theory. . . Someday we'll all have to start acting smarter---as a group.

tunnel of deaf

Up in the Cascade mountains there is a bike path with a crumbling old two-mile tunnel called the Iron Horse Trail. Even on the most beautiful summer day, the tunnel is cold, dank and pitch-black. Once inside if you hold your hand in front of your face you can’t see it. After riding about the three-quarters of the way through, just when you lose all hope of ever seeing light again, a teeny bright pin-prick twinkles up ahead. As you ride towards it, blackness gives way to gray, the dimness of the tunnel fades, and soon you’re out in the warmth of daylight again. The views on the other side of the tunnel are glorious!! Much more magnificent than when you entered. Here, you’re on top of a mountain clearing looking out over miles and miles of the Cascade Range. Just you and the mountains. It seems like you‘ve gone through hell to get there.

Few people ever make that trip.

Many times I’ve thought of that Iron Horse Trail as a metaphor for my deaf journey. I haven’t been on it since my son was young enough to enjoy biking with me. The last time we were up there, we spent an afternoon riding down the mountainside with some friends, and it was one of those hot summer golden days of motherhood where everything seemed just right with the world. Before he became a rebellious teen. Before our friends were transferred across the country to Florida. Before my hearing took yet another nose-dive.

Late-deafness brings a lot of garbage and grief with it. Many of us spend years wandering around inside a dark tunnel. Few of us enter willingly. I say “few” because there actually are those who destroy their hearing on purpose, but that’s another story for another day. The rest of us end up in the deaf tunnel kicking and screaming. We’re never prepared. We don’t have flashlights or sweaters. We have no idea how we got there or what’s up ahead. We’re cut off from our daily activities, friends, and we feel lost. Trapped.

Eight years ago that’s where I was. And it was there, deep inside the “deaf” tunnel I made some of the best friends I’ve ever met through an on-line support group called the Say What Club. We leaned on each other for help until we made it out the other side. They taught me how to deal with my deafness, and eventually I was able to help others. I’m still learning. Life goes on and it’s good on this other side of the tunnel-- the deaf side.

These past few weeks I’ve been working on a blog so my deaf/ hard-of-hearing friends and I could share our late-deaf/hard-of-hearing experiences with others. I am hoping you will enjoy reading their entries and possibly learn something about late-deafness. Our hope at the Say What Club is to help those struggling with hearing loss. Those who are new to hearing loss or those just wanting some support. We hope to shed light on the everyday challenges people new to hearing loss face and maybe help with coping strategies so we all can get on with living full productive lives. We don’t have all the answers, but we listen. Please stop by.

Say What Club Blog

(Cascades by NateFish3000, Snoqualmie Tunnel above by Ray Fischer)

A Message to Deaf Vloggers

"If all vlogs created by hearing people have subtitles, then I will add them to my vlogs.I guess it is all depends on who you want to target with your vlogs. For me, Deaf community and ASL users. I guess it's matter of preference here." Unnamed Deaf V/blog Commenter


Five Things I Wish You Knew--

1) It bothers me that hearing people don’t caption their vlogs too.

2) I wish I knew ASL better, so I wouldn’t need to ask you to caption your vlogs.

3) You sign too fast for me, and I want to know you.

4) While I've been losing my hearing a long time, I haven't been at this level of silence very long. I'm still adjusting.

5) I want to learn from you.

Can the "Culture" Argument Be Applied Equally?

Today I came across a dvd I'm sure many of you have seen. Maybe some of you are even in it for all I know. . . haha! It's called The Sound and Fury. I watched it several years ago with mixed feelings. Seeing it again reminded me of a blog I read recently -- Cochlear Implant On-line. Rachel, a young woman who was implanted at age two said one reason her parents decided to go through with the cochlear implant, rather than teaching Rachel ASL was because her parents were not deaf and didn't know ASL themselves. If they had wanted to teach Rachel ASL, they would have had to learn it themselves first, and the ASL would have been a second language to them. She explained how ASL was not their culture. She then used an analogy of American parents who adopt a Chinese baby. Adoptive American parents of foreign children usually teach their babies English because they live in America, she said.

Rachel's mother Melissa then commented in Rachel's blog there were additional reasons. They HAD in fact explored the pros and cons thoroughly, then decided a cochlear implant would offer their daughter the most opportunities in life. You can read the entire blog here. I'm not judging. I might have done the very same thing myself 20 years ago if faced with the same options. I don't know. I'm not sure what I would do today. It's no longer my decision to make, since I'm past the age to have children.

I thought Rachel had a valid point. Parents normally raise their children in the culture they live, not the culture the child came from. In the case of Deaf children, the vast majority are born into hearing families.

However I saw some holes in her analogy. For example, adopted Korean children often go to Korean school or meet with other Koreans to learn about their culture and country. Also adopted children from other countries are hearing and can learn any language, where as Deaf children are Deaf whether they have a cochlear implant or not. They're still Deaf in many situations-- at night, while swimming, water-skiing, snorkeling, taking a shower, when the batteries die or the implant malfunctions. Even though a piece of technology helps them hear for awhile, they are still d/Deaf. No matter what country you live in, it doesn't change the fact you can't hear in those situations.

I had completely forgotten about Sound and Fury until I saw it in the check-in bin today, while working. For those few of you who don't know what it's about I've copied amazon.com's brief synopsis here--

Amazon.com
You might expect that the cochlear implant, a device that can give deaf people the gift of hearing, would be embraced by the deaf community. Josh Aronson's Sound and Fury, a compelling and often devastating documentary, tells a different story. Two brothers, one deaf and one hearing, grapple with a decision concerning their deaf children, and the debate that rages through the extended family turns less on technology and medical concerns than social politics and culture. The deaf parents of a school-age girl fear what the implant would do to her unique identity, while the hearing parents of a toddler see no question at all. Aronson gives all sides their say, but ultimately the increasingly angry arguments reveal prejudices and fears from both sides and split the once-harmonious family, much like they have split hearing and deaf communities across the country. --Sean Axmaker

The first time I saw it several years ago, I thought about it all night. When you're hearing, the argument that "Deaf isn't MY culture seems perfectly sane." Of course. It's hard to learn a second language. How can you teach a child ASL if you yourself don't use ASL?

But when the tables are turned and there are two Deaf parents with a Deaf child who say, "Hearing isn't MY culture, why should I implant MY child?" they have the same argument, don't they?

Worse, because success with an implant depends on AVT, it seems like a quite a hurdle for Deaf parents to cross with their child's oral progress. If a hearing parent with working hands can't learn ASL, I wonder how a Deaf parent with non-working ears could be expected to help a Deaf child learn to speak??

And still-- many Hearing people I've discussed this movie with don't quite understand. They think you can just implant a kid and then they're hearing. Praise the Lord! It was clear in the movie the grandparents of this family didn't understand. They put so much pressure on their Deaf son and his wife to implant their granddaughter.

All I can say is it's sad the way Deafness sometimes tears families apart so much. I see the definitions/labels tearing a community apart in here. I don't think there are any right or wrong answers to the cochlear implant issue. We all have choices to make and God knows we each have to live with those choices -- right or wrong. Hindsight is sometimes best. Let's try to be more gentle with each other as we move along into our own unknowns.

ASL Practice With My Husband

My husband and I took a couple beginning ASL sessions together two years ago, then he forgot nearly everything. He’s busy. We didn’t practice enough. I have deaf/HH friends who know a little sign, so I practiced with them and advanced more quickly, then he decided to drop out and I took more classes. To be fair, he isn’t a stupid man. He was fluent in German when we met, and he has taught himself French and Spanish since then. Normally he picks up languages quickly.

Now I’m taking ASL at the local community college, and finding I need to practice more often. So last weekend I asked him to help with my ASL vocabulary. Also, I thought maybe if he helped me practice he might pick up a few words. Sound like a good plan?

Breakfast seemed like the right time. I asked if he remembered the sign for bacon. We learned that before. He didn’t remember. I showed him.

“Really?” he asked in surprise, “Why are the fingers sizzling in an H instead of a B?”

“Whoa, great question!” I thought smiling. So I explained how the H looks more like a thin strip of bacon whereas the B- hand doesn’t.

Then I asked if he remembered the sign for coffee.
He made the sign for making out. I snickered and showed him the difference between “making out” and “coffee.”

Then I showed him “syrup.”

“Not to be confused with gas,” I said.

“Gas?” he piped up , “Which kind?”

“The kind you pump.” I showed him my fist. This is the tank, and here’s your spout. My right thumb became a spout.

“Oh!” he smiled mischievously, “How do you sign the other kind???” Men are just little boys in big pants, I thought to myself. Didn‘t my mom always say that?

I only just recently learned that “gas” sign. “Weellll,. . .” I made my hand into a fist again, “You see this fist can have another meaning. It looks like, er. . .an . . .something at the other end of your body. . .that can be offensive.“ He smiled broadly, as I traced around the index finger and thumb of my fist. He understood. Good, I thought.

“In fact,” I went on, “you don’t ever want to do the gasoline sign, stick your thumb ALL the way in, then pull it out with a jerk while frowning at someone or pointing at them. That’s bad. But the other kind of gas sign is. . .well, . . . you can make it look like air is coming out of your fist (which represents the other end) by filling up your cheeks with air, then pushing quick puffs out of your mouth while spreading your other hand out over the obscene part of the fist, OR you can just hold your nose.” I demonstrated. . .

“Why is it bad to. . .?”

“Nevermind,” I cut him off.

Next, it was time to practice. I’m terrible at lip-reading random words. Who isn’t?? There’s no context.

“mmmppfff” he says.

“What?”

Mmmmpppfff” he emphasized.

I still didn’t get it.

“MMMPPPPFFFF.” he said it louder, moving his lips in slow motion.

“Sorry, I’m NOT getting it.”

“You know--MPF!, MMPPFF!” He said in frustration.

“Can you fingerspell it?”

He thought and paused as he formed each letter carefully. I’ve been told by ASL teachers to be patient because man fingers aren’t as nimble as female fingers. I sat. . .waiting. . . patiently.


Then I was confused. “S-t-r-u-n-k?” I guessed.

“NO!” he gasped in frustration. “I forgot “tht-- what’s THT?!?”

“tht?. . .ummmm” I thought hard.

Moving on, we proceeded down my list of vocabulary words. Several chapters worth. Each time I didn’t sign something exactly as it showed in the book, he’d correct me.

“Shows here TWO hands.”

“Yeah, yeah. It’s OK to do it with one.” I would assure him.

“That’s not what it shows.” He'd argue.

“Well, I’m telling you it’s OK!”

“Look. YOU did THIS, and the picture shows THIS! He would hold up the book. “You did it WRONG.”

“NO. I. DIDN’T. Deaf people sometimes use one hand because the other hand is busy. They don’t ALWAYS sign everything exactly the way it shows in the book!”

“Well, I’m just telling you so you’ll know. . .And your other hand WASN’T busy! Do you NOT want me to say anything if you do it the wrong way? Because from now on, every time you make a mistake I just won‘t say anything. . .if that‘s what you want . . .”

(sigh)

Then he signed a sentence. “You, me, make-out.” Clear as day. His eyebrows moved up and down suggestively. And another sentence . . . “I horny.”

This was no accident. We learned “horny” a couple years ago in ASL after a German woman accidentally told the entire class how horny she was. “Horny” happens to be one of the few signs my husband has never forgotten. Why? He’s a man.

I adore him, but he’s a lousy study buddy. I don’t get much ASL practice at home. I need Deaf support.

Thank you Mishka

I realize your recent blogging has been to examine implants for children, but it has influenced my decision not to go through with an experimental cochlear surgery.

As many of you know, I went for a cochlear implant evaluation last November. Though I don’t hear speech well, I don’t qualify for a regular implant because I have good low tone frequencies. There’s a new, less invasive type of implant in trials called a hybrid, which only has a ten-inch long electrode instead of twenty-four. Because of the shorter electrode, the cochlea remains relatively in tact and residual hearing supposedly isn’t lost.

For those unfamiliar with this new technology, here’s an article explaining in more detail what it can mean to someone like me with good low tone frequencies.
http://www.hearingresearch.org/Dr.Ross/Implants.htm I’ve pasted a couple of relevant paragraphs here.

"Ski-slope" hearing losses are a common occurrence in our clinics, and they always present a hearing aid fitting challenge. Because the person may have relatively good low frequency hearing, it is necessary to ensure that over-amplification of the low frequencies does not occur. Because the hearing thresholds in the higher frequencies are so poor, it is difficult for a hearing aid to provide aided audibility without producing unacceptable distortion or discomfort. Furthermore, as some recent research has revealed, the cochlea hair cells that respond to the high frequencies may actually be missing (cochlea "dead spots"). Amplifying these areas may be more than useless; it may actually be counter productive. While some of these people may obtain some help from a hearing aid (at the lower and middle frequencies) significant hearing problems almost always remain.

Traditional cochlear implants have rarely been considered an option for people who fall in this category. Almost always, the insertion of a long electrode into the cochlea results in the destruction of the surviving hair cells. Perhaps some people who elect this route would wind up better off, even with the loss of their low frequency residual hearing, but then again perhaps not. It is not a chance that many people are willing to take.

I should add that testing phase two for this hybrid closed last fall in the US, and we’re currently waiting on the FDA to approve testing phase three, which may happen sometime this spring if all goes well. I met criteria for phases one and two. Because the FDA hasn’t yet approved test three, I was told there was no guarantee that I would qualify for phase three. The FDA had the prerogative to change test guidelines. However, at this point there is no reason to believe they would change criteria, so I am on a wait list.

I had some initial qualms when I learned I met the criteria. First of all, a small part of the approval process was based on whether one benefits from hearing aids. My hearing aids are nearly eight years old. Though my aids were state-of-the-art when I bought them, the audiologist who administered my test suggested I might be happier with new hearing aids because several advances have been made in the past decade.

Nevertheless, the audiological evaluation took two hours and was more thorough than many I’ve been through, however not the MOST thorough I’ve sat through. I’m not sure how to put this. I picked up on some vibes from the audiologist. I really didn’t think she wanted to add me to the wait list, but the surgeon was more than happy to. I might be wrong about that. I’m an intuitive person and wanted to talk to her some more, but there wasn‘t time. I have since found out that audiologist has left. Maybe I‘m reading more into this than I should. I don‘t know what to think.
Next, I had a consult with the surgeon who performs the experimental surgery. When I asked about risk the of the hybrid, he glossed over the usual risks of surgery, discussed risks of implant surgery, and finally got down to statistics on the hybrid. Fifteen percent lose their low tone residual hearing in the first year. Considering the whole point of this technology is to PRESERVE low tone hearing, I thought that was a rather HIGH rate of failure. Then he went on to say about five percent end up with WORSE hearing than they started with. I asked about newer hearing aids, and he said I would hear much better with the implant-- if it worked. No guarantees of course.

As we left I told my husband I wasn’t sure I wanted to go through with it. He agreed, though tried to remain upbeat. I had a few months to decide, he assured. Later I said the same thing to my dad. His reaction was immediate relief. I didn’t realize how much he had been stressing over the possibility of experimental surgery.

Still. . . I wasn’t sure I was making the right choice. I want to hear. My work is suffering because I deal with the public on a daily basis and I rely on lip-reading with my hearing aids. I hate my hearing aids. They‘re uncomfortable and I have a lot of sound distortion. My hearing is still declining. Anyone with an ongoing hearing loss understands the constant struggle. You’re always adjusting to new lows and readjusting. There’s fluctuation. Tinnitus comes and goes whenever you have a major drop, which also comes and goes. An implant would mean stable hearing on at least one side.

I want to say in NO WAY do I wish to sound as if I'm judging others for their decisions to get a cochlear implant. We're all different with different needs, different bodies, different life experiences. I'm looking at EXPERIMENTAL technology here. If you're a parent of a Deaf child, I can't judge you. I haven't walked in your shoes. My children are hearing. Because of my own deafness, I believe I would have enjoyed raising a Deaf child. Would I wish progressive hearing loss on any of my own children? NO!

For the past several years I’ve been treated by my family doctor, an ENT and a neurologist for excruciating migraines and sinus headaches. While several friends and relatives have suggested maybe the migraines are caused by stress of hearing loss, my neurologist believes the migraines are not psychological. That's OLD science, he says. Most migraines are caused by biological swelling within within the brain. In my case, they are possibly related to sinuses and allergy or an old neck injury.

After reading Mishka’s articles, I realize getting an experimental implant surgery would be adding more fuel to the headache fire. More than a few implantees admitted to Mishka that headache problems resulted from faulty mappings. I’ve seen examples of this first hand myself-- people I know with implants holding their heads in wincing pain. One person I know has had horrible electrical pain running down one side of her face from a faulty electrode. Another I know has been living with cochlear failure for months. I've heard horror stories of testing that rivaled childbirth.

The thing is-- if you read the article it all sounds pretty rosy, doesn’t it?
Then yesterday I went to see my sinus ENT for the first time in several months. Glancing over my chart, he saw the report from my visit to the Cochlear research center last November.

“What’s this all about?” he asked.

.
“Experimental Hybrid Cochlear Implant.” I said.

“EXPERIMENTAL? BE CAREFUL WITH THAT.” he warned.

"I'm not doing it." I told him. It wasn't until that moment I realized I had made up my mind.

I’ve always believed in fate and messages from angels. Someone’s trying to tell me something. Thanks Mishka. You're an angel.

SEX BUNNY ADVICE

After reading all this blogging hullabaloo about Deaf Sex Bunnies last Saturday night, I found myself reflecting on romance, sex, porn and the differences between men and women. I'll back up a little and confess I became hopelessly hooked on opera decades ago when my hearing wasn't as bad as it is now.

What a lot of people don't realize is how visually stimulating opera can be. The stage sets are always changing. Furniture moves, walls are added, floors are raised and lowered between scenes. A couple years ago, when I went to see Macbeth, the walls bled! Lights, shadows, colors convey a mood. The choreography is lively or graceful, and the costumes dazzling. The acting is way more dramatic than Hollywood acting. (Yes--I'm going to talk about sex-- I promise.)

Finally, because opera is usually (not always) sung in a foreign language most metropolitan productions are subtitled, so I don't have to ask for extra accommodations. It's the one time I can just be part of the crowd without feeling deaf. 95% of the audience doesn't understand the story line without reading it either. If you're used to watching captioned TV, it's a breeze-- especially since they take forever to say one simple line because they're singing it, and they repeat it fifteen times.


Sunday's production was Pagliacci by Ruggero Leoncavallo. An unusually short opera that began with a sweet erotic love scene, it included a rare circus performance in the second act, then ended with a sudden double homicide. All in all, a fairly typical story line, except the circus act. Neither composer or opera was well-known to me, which was a treat because I've seen most all the popular operas at least twice now. However, I learned a bit of dirt about Leoncavallo later-- that he had once been accused of plagiarizing, since he wrote an opera titled La Boheme that was basically the same story as Puccini's. It was never proven, but is rarely performed today. (The sex part is coming up! Be patient!!)


Opera was considered racy in its heyday. In earlier times, women weren't allowed to act or sing on stage, so males had to play the parts of women. Castrati (males castrated before puberty) with high voices dressed in female costumes, and sang all the soprano parts on stage. It was considered an honor to be chosen to be castrato, even though it meant painful sexual mutilation at age ten. Highly paid and valued, they were pampered, spoiled, demanding, fussy and difficult. Opera parts were written specifically for castrati, whose voices were unique in their range. The practice of castrating little boys for opera finally ceased in the early 19th C. No one alive today has ever heard a castrato sing. Ironically today's operas sometimes feature women dressed up as young males to play former castrati parts, which sometimes have been tweaked a bit to allow for soprano voices, since castrati no longer exist. It doesn't matter to me because I can't tell the difference anyway. (Obviously I don't attend the opera for the music, though I can hear a good share of the baritone singing and many of the base instruments because of my good low frequencies.)

You might think it affected their love lives, but going under "the knife" benefited the castrati in love. Because efficient birth control was lacking, castrated males were in demand. Upper-class married women whose husbands left town for extended periods enjoyed the services of castrati. Wealthy unmarried women -- perhaps "old maids" and widows-- also depended on castrati services. (Realize "old maids" and "widows" could be all of twenty-three in the mid- 18th century.) The use of Castrati ensured no messy unwanted pregnancy. Love affairs, rolling around in the sheets, enjoying a boy toy-- this is nothing new in the 21st C. Woman have always loved sex and and have been in touch with their sexual side since before Cleopatra. (No-- I would never, ever, ever WANT a castrato! Thank God for modern birth control!! The SEX TALK IS IN THE NEXT PARAGRAPH)

I had to laugh at the suggestion some men recently proposed in a blog about "Deaf Porn" -- that porn could actually be a "good thing" for women because it might "help" them enjoy their sexuality. What?! Could they be that clueless? If you are a guy reading this, I hate to tell you, but if your woman doesn't like sex, it's not HER, it's YOU. Get a clue! She LIKES sex, just not with YOU.

We aren't that complicated. Shakespeare got it right with Romeo and Juliette. Wooing a woman is all about romance and chivalry. That's why groups of us go to operas to salivate over Rodolfo in La Boheme. Put those porn flicks AWAY and pick up a chick flick for once! Practice what you see THOSE guys doing. Notice how tenderly Roldolfo treats Mimi. Act like Rodolfo or the Flying Dutchman, or even Superman. You might be surprised by how your woman starts expressing her sexuality. (No you don't have to fly!) What every woman loved about Superman was he cared enough about Lois Lane to be there when she needed him EVERY TIME. It was never about his super powers. Clark Kent simply missed the boat! He was always too busy in that phone booth when she needed a man. Two words. Foreplay = Romance. Trust me. I'm a woman. I know way more about it than a bunch of guys who make porn.