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)