Ageless Passions by Karen Putz

Author: Karen Putz

  • Deaf Writer Jumps Out of a Plane… And Survives!

    No, no, it wasn’t me.

    It was Meryl Evans.

    To celebrate her blog’s eighth birthday, Meryl vowed to jump out of a plane if readers donated $5,000 worth of stuff to give away.

    Five grand–she figured she wouldn’t get anywhere near that much stuff donated.  So she thought she was pretty safe.  After all, a mom of three kids shouldn’t be jumping out of planes, right?

    At first, it looked like Meryl would be able to keep her feet on the ground.  Then at the last minute, she received a donation that put her over the line.  She made an appointment with Skydive Dallas to jump on June 20th.

    She breathed a sigh of relief and dismay when the weather forced her to delay the jump.  “Oh great,” she told me, “More time to be nervous.”

    And then she got cold feet.

    Yesterday, she sent me an email. “I’m not sure I am going to do it now,” she wrote. “Technically, I didn’t get the $5k worth of prizes by June 1. And hearing some stories just made me want to stay on Earth.”

    That’s ok, I reassured her.  Your readers will understand.

    Hell, I understand– I’m a mom of three kids and the thought of jumping out of a perfectly good airplane gives me the willies.  It would be fun, yeah, but going splat–that would hurt.

    Well, what do you know, she jumped.

    And she survived to tell the tale.

    Meryl, girl, you rock!

     

  • The Importance of Deaf and Hard of Hearing Role Models

    Before you read on, I want you to go and take a look at Stephen Hopson’s blog post over at Adversity University:

    Aspire to Inspire a Kid Before You Expire

    From his blog:

    Around 11:30 am, the first batch of kids began to arrive.  My heart picked up a beat. While my signing skills had improved over the years, I was a late bloomer in that department (among other things) because I wasn’t exposed to it until I was well into my third year of college.  Over the years though, I slowly but steadily improved to the point where I was easily able to converse with just about anyone who used sign language as a primary  means of communication.  It made me feel bilingual.

    I also had a flashback to when I was a young boy.  While growing up, I never had deaf role models to look up to because there weren’t any.  So casting myself in that role was going to be one very interesting experience.

    Little did I know a pint-sized of a kid was going to make a huge impact on my life a few hours later.

    There’s an important message in there: Stephen didn’t have any role models while growing up deaf.

    Neither did I.

    I like to think that deaf and hard of hearing kids today are exposed to many more deaf and hard of hearing role models today than in the past, thanks to the access to many inspirational articles found on the internet and so many deaf and hard of hearing individuals in all kinds of jobs. 

    Programs like the Chicago Hearing Society’s Adult Role Model Program are valuable in connecting kids with deaf and hard of hearing adults.  The Chicago area kids have met chefs, vets, doctors and more.  You can read more about June Prusak, the Youth Manager behind the program here:  June Prusak, Youth Manager.

    While there have always been deaf and hard of hearing adults who have succeeded in areas where no one has gone before, I find that they have often had someone behind them–whether parents and/or teachers–someone— and the attitude of “I can do it!” and “I will do it!”

    That’s why it’s so important for deaf and hard of hearing adults to become role models for today’s deaf and hard of hearing youth.  Whenever a kid wonders, “Can I do that, even though I’m deaf/hard of hearing?” having a role model to look up to or be mentored by can make the path so much easier for that kid.  Even when a deaf/hard of hearing child is blazing a new path, the support of deaf and hard of hearing role models encouraging them along and saying “Go for it!” can make the difference in the life of a child.

    So parents, if you’re reading this and realizing that your child hasn’t had much exposure to deaf and hard of hearing adults, take a moment to show your deaf/hard of hearing child that the world is indeed, wide open for them and find them a role model today. 

  • Are You Living Your Dream Life?

    I asked a simple question:

    “Are you living your dream life?”

    The question just came to me one day and I was curious how other people would answer such a simple, yet loaded question. So I started asking around. Just that question, “Are you living your dream life?”

    When I asked it face-to-face, I got some startled looks. When I asked it via email, Twitter or IM, I sometimes had people asking me more questions.

    “What do you mean, dream life?”

    “Why are you asking this kind of question?”

     “Why do you want to know?”

    “Dream life, who has a dream life?”

    Whoa, baby.

    But others got right down to it.

    Ben Lachman, a friend from the Chicago area, was pretty open with his answer. “Nope,” was his answer. “Well, my dream life is basically pretty selfish,” he explained. “It has to do with massive financial success so that I can use that to support my hobbies and my family, as well as contributing money to causes that I support. Also, my dream life contains a loving wife and children, and those are yet to be attained.”

    Ben has encountered some stumbling blocks along the way to financial success, but he has no doubt that he’ll be able to achieve his dream life.

    Phyllis from Ima On (and Off) the Bima says that while her life may not seem interesting, she’s definitely living her dream life. “I have a wonderful family — husband, children, parents — we are all blessed with good health, I live in a nice home, with access to almost anything I could possibly want,” she said.  “I work in what is truly my dream job: I decided that I wanted to be a rabbi when I was 12 years old and here I am. And to be honest, very few obstacles stood in my path.  It all seems very charmed and I know it — and I can only appreciate it and be thankful for it, and know that blessings are here for us to accept and live and love and cherish…so even when things don’t seem quite right or I am annoyed with someone, or the kids wake me up all night or the laundry doesn’t get done, in the moment I might get cranky or annoyed (trust me, I do) but in the grand scheme of things I know how lucky I am.”

    Over at Crunchy Carpets (whose motto is, “Clean socks are a privilege, not a right”–my kind of Mom!) Kerry says she isn’t quite living her dream life, but she knows what it looks like: No hassles from the in-laws, no pain for her husband, his website taking off, a home big enough for them all–and money to enjoy it. 

    But she’s not done.  There’s also another baby and another home somewhere near the ocean or perhaps out in the country.  And to top it all off, her dream life includes having her blog take off and bring in the big bucks.

    Oooo, nice dream life.  I like it.

    If there’s anyone who I think is living a dream life, that would be Peter Shankman.   The guy skydives for fun.  I stumbled across his blog just a few weeks ago.  Peter is the CEO of the PR firm, Geek Factory, and he recently launched Help a Reporter, which is growing so fast (11,000 and counting) that he is connecting reporters with sources at lightning speed.  So when I asked Peter that dream question, he simply said, “I’m trying to!”  But he also had more to share: “I think anyone can [live a dream life]–it simply comes down to not being afraid.  If it doesn’t end with ‘time of death was…’ or ‘international incident,’ or ‘bail is set at…’ then why the hell not try it?  You can always get a job somewhere and make money if it doesn’t work.”

    Joanna Young, from Confident Writing, tells me that her dream life is in the process.  “I’m creating it, building it, writing it down to make it happen and grateful for the good bits I’ve got.”  Joanne recommends the book, Write it Down, Make it Happen to take steps towards a dream life.

    Some people shared emails and asked me not to include their answers in the blog.  No, they said, they weren’t living their dream life.  Life was hard, money was scarce, they were in jobs they didn’t like, some had no goals, and some were in the middle of life changes that could possibly lead them to their dream lives, but they weren’t ready to make those decisions public.

    If there’s anyone living a dream life, I knew it had to be my brother.  So I fired off the question to him.  “Yup!” he responded.  “Airplanes, islands and gas to get there, it doesn’t get any better.”  My brother and his wife are on Kelly’s Island up at Lake Erie and they’re heading over to New Jersey in his plane to visit her family tomorrow.  Ah yes, dream life, indeed.

    So I turned to my friend Sue.  Sue and I have known each other since college and we’ve shared a lot together.  Sue went through a divorce, went back to school to get another degree, and met her current husband at a Halloween party.  She’s happily married to a great guy, so of course, I emailed the question to her. 

    “As for the husband and kids, everything’s great!” she said.  “But I want a job where I can be mentally stimulated, use my mind and make tons of money!”  Her other desire for the dream life is to have someone come and clean her house on a regular basis.  Oh yeah, I have that dream too.

    And then Sue shot an email back to me: 

    “Are you living your dream life?” she asked me.

    So I had to sit back and think about that for a second.  And I came to the realization that,  yes I am living a dream life.  I’ve got a hubby and three great kids, my extended family,  a roof over my head, food in the fridge, and chocolate stashed in the desk drawer.  Toss in a great circle of friends,  a well-behaved dog (most of the time) and a place to escape to on the weekends.  I do have dreams yet to be lived, for that’s what makes the dream life so good– one can create more and more dreams to experience as life is lived.

    So tell me, are you living your dream life?

     

     

  • Proud Mommy Moment: My Baby Hit a Home Run!

    WSAD picnic 2008 037

    Public service announcement for the day:

    In the playoff game between the Phillies and the Cardinals, Phillies outfielder, Steven Putz, smashed the ball into center field and rounded all the bases for a home run.  The Phillies won, 12 to 5.

    That concludes this public service announcement.  You may go back to your daily scheduled activities.

  • A Mother’s Journey, And a Final Goodbye

    It was one of those evenings. 

    Ants had gotten into the kitchen and were serving themselves dinner on the crumbs of food that the kids had left on the counter earlier in the day.   I was filling out the school registration forms in triplicate and trying to figure out the best pay period to submit the check to cover the cost of the fees and still have enough money left over to cover the license plate fees.  The kids were complaining that they had nothing to do.  I sat there frustrated, because there was so much to do and I didn’t know which item to tackle first. 

    I went into the den to sit down and submit an article that was due and discovered that the computer wouldn’t turn on.  I unplugged it, fiddled with all the wires and plugged it back in. 

    Nothing. 

    Out of frustration, I slammed my hand down on the on/off switch.

    Nothing.

    I unplugged every wire, grabbed the computer and headed over to Geek Squad.  The technician plugged it in and it worked just fine over there.  I came home and hooked it back up– it worked.

    With a sigh, I signed into Twitter and decided to catch up with some conversations. I wasn’t ready to face the work that I needed to do.  I came across this Tweet by Guy Kawasaki:

    The link is to a slideshow of a mother and her son and a journey with cancer. Take a moment to experience it (it is captioned):

    A Mother’s Journey.

    I sat there and I cried.

    What I had been feeling tonight was little stuff; what this mother has gone through is huge.

    And sadly, this brought back memories of Tod Morris, a friend who passed away from cancer very suddenly. You can read Tod’s story here: In Memory of Tod Morris.

    So I’m taking a moment to feel that mother’s pain in losing her child and then I’m going to reach out and embrace my kids. 

    The little stuff can wait.

  • Welcome to my World, Deaf, Hard of Hearing, Hearing–Entwined

    On Saturday morning, we headed up to Busse Woods for the annual West Suburban Association of the Deaf picnic.  This year, the picnic was sponsored by CSDVRS Clear Blue, a program by the relay company that aims to give back to the Deaf Community.  They provided lunch and drinks for everyone.  Joe, my hubby, volunteered at the picnic to support the WSAD softball team and the upcoming NRAD racquetball tournament.

    WSAD has a special place in my heart.  I played volleyball for the WSAD team for many years.  I became the secretary and then the first woman president of the club back in the early ’90s.  Today, the club is run by another woman president, Julia Anderson, who is also featured on my other blog:  Jobs, Careers and Callings.
     

     

     There were hundreds of deaf and hard of hearing people at the picnic and hands were flying everywhere.  What I love most about these gatherings is that every conversation, everywhere we go, is accessible for me and my family.  There’s an ease that I can’t explain.  When I gather in a group with an interpreter or if I have to lipread– I’m usually exhausted after an event.  But when I gather with deaf and hard of hearing friends, my brain just seems to kick back and let all the conversations roll.  

    At the picnic, I was finally able to meet Teri-Lyn Calhoun from the Heartland Deaf Center.  Teri-Lyn and I had emailed each other for a long time, but had never had the opportunity to connect until now.

    The kids were having a blast.  David and Steven entered a bean bag contest and they were leading in the competition when I announced to Steven that it was time for us to leave and head to his baseball game.  He wasn’t happy about leaving, as he was having a good time chatting with everyone and tossing that bean bag.  There was no way we could have missed the game, as his team needed to win to get into the playoffs.

    Steven scored three runs, his team won by a large number of runs and the coach announced that he was going to treat everyone to ice cream at Dairy Queen.  Steven has been pretty comfortable with his team this year and I watched as he rough-housed with the other boys and cracked some jokes.  Sure, he fits in, up to a point.  The friendships on the team are mostly surface ones.  He does well with conversations that are one-on-one, but when the whole group is talking about something, he’s left out.  Bless those kids that “get it” and make the effort to communicate.  Ditto to the parents that take a moment to get to know us as well. 

    We headed home to throw brats in the oven and hot dogs on the stove.  Our grill was a goner–with two huge, rusted holes and an ignitor that wouldn’t spark.  A bunch of friends spent the rest of the evening with us, kicking back together, enjoying the meal and conversation. 

    Stephen Hopson, on his Adversity University blog asked his readers to name one situation that could have gone south, but didn’t, because of a changed perspective.  Here’s what I shared with him:

    “I became deaf just a short time before I transferred to a college that had several deaf and hard of hearing students on the same floor. I didn’t see it as a blessing at the time, because I was going through a “woe is me” period for several weeks and mourning the loss. But it did indeed, turn out to be a blessing, for I finally accepted myself as a deaf person and brought a new language into my life along with many, many new friends.”

    Here’s to the friends who fling the communication gates wide open! 

  • LaRonda Zupp–Client Support Specialist

    As a Client Support Specialist for DCARA, LaRonda provides a variety of services to deaf and hard of hearing senior citizens every day.  She meets with clients to provide peer counseling, advocacy, document translation and communication assistance.  She also coordinates interpreter services.  Her office is located at Fremont Oak Gardens, an apartment complex with 50 apartments.

    In addition to meeting with several clients each day, LaRonda provides classes in exercise and nutrition twice a week.  “I coordinate Community Education two or three times a month,” said LaRonda.  “These classes include topics that cover deaf issues, health issues and senior issues.  I teach a lot of independent living skills to help seniors stay connected to their world and live independently.”

    LaRonda holds a B.A. degree in Deaf Studies and an M.S. in Counseling.  In addition to her degrees, LaRonda holds certificates in Parent Education, Non-Profit Management and Adult Education.

    “I have a lot of paper to hang on my wall of fame,” LaRonda chuckled.

    Before coming to DCARA, LaRonda worked as a Parent Educator for deaf and hard of hearing parents for eight years.  She spent ten years as a School Counselor at the Washington School for the Deaf.  “I believe my jobs have chosen me,” LaRonda said. “I never went out looking for them.  Most often, they have fallen in my lap.  I have had a number of bosses come up to me and simply say ‘I want you to come work for me. Want a job?’  I lick my finger, hold it up to the wind and trust in the will of heaven.  I know that wherever I go, I’m supposed to be there.   The one thing I choose to do is remain serving the Deaf Community.”

    LaRonda has a piece of advice that she’d like to share with those who are exploring their life path:

    Listen with the ear of your heart. The path we choose is not always the path we think we want. Our paths often choose us. My advice is be true to what you know about yourself and follow your bliss. If you don’t know what your bliss is, take risks to find out. Live life outside of the box a bit and trust your journey will become you.

    Don’t be afraid to dance, just get out there and boogie!  Take risks.  Try new things.  Don’t limit yourself.  Burst forth.  You will discover how beautiful you are and how enriching life can be when you just get out there and give it your best!”

    For more on LaRonda, visit her blog:  The Ear of my Heart.

     

     

     

     

  • Leonard Hall, Attorney

    There’s no typical day of work for the City of Olathe Legal Department.  Leonard Hall, a deaf attorney who works for the city, takes care of land acquisition, eminent domain, zoning, and construction contracts.  Toss in a little bit of ADA, Tax Law and Development Standards, and you can see why the Assistant City Attorney is busy from eight in the morning to six at night.  On Tuesday nights, he is involved with City Council meetings.   

    “I like my job,” says Leonard.  “I usually see the ‘final products,’ such as commercial shopping centers, interchanges, road improvements or bridge projects completed by the city.” 

    Leonard has a background in business and he obtained his Bachelor’s degree in Business Administration and Social Sciences at Emporia State  University.  He attended Emporia on a scholarship for long distance running and participated in the World Games for the Deaf.  “I hold one world record for the deaf for the three-mile run and four American records in other events,” Leonard shared. 

    Leonard worked in his father’s business, Hall Truck Line, which gave him a solid background in business.  With a strong desire to help people and provide service to deaf people, Leonard decided to continue his schooling to become an attorney.  He obtained a Juris Doctor Degree in Law at Washburn University Law School in Kansas. 

    Leonard still finds time to write a weekly column for the Olathe News.  He became a columnist in 1993 and has produced over 700 articles for the newspaper.  He is also the coordinator of the Kansas City Coffee Chat– a social, monthly gathering of deaf and hard of hearing individuals. 

    Leonard’s newest challenge is learning to adjust to the new sounds produced by his cochlear implant.  He had surgery in July of this year and wears a hearing aid in the other ear.  “I am going through a world of changes with my hearing,” says Leonard.  “My ability to understand speech went down to 5% before the surgery.  Now I am back up to understanding 30% of speech with my implant and my hearing aid.  I hope to increase it to 50% with the implant.” 

    Leonard is enjoying the new sounds but explains that it is a lot of hard work.  “I like it, but it is a very difficult process — first the surgery, second, the mapping to increase the level of hearing and understanding, and third, the difficulty of adjusting to each level of hearing.   It has been a long four months of making a lot of adjustments and many more months to go.”

    Leonard is married to Charla, who is hard of hearing and has a vision impairment.  They have one pre-teen son, Daniel who has hearing in the normal range.

     

     

     

  • What I Learned From… My Dog

    Today’s post is a hat tip to Robert Hruzek, the guy who wears a twenty-gallon cowboy hat.  (Yeah, it isn’t ten-gallon anymore–have you seen the price of gas lately?)  Every week, Robert corrals a bunch of people to write about stuff and the current theme is:  What I Learned From Animals. 

    Instead of slaving away like the rest of us, Robert and his wife are lounging on vacation at Laity Lodge.  But to be fair, he did submit his entry before he left:

    The First Step to Effective Communication.  Go read it, he’s got some funny stuff about a deaf cat.

    I’ve decided to turn this blog post over to Kaycie, my West Highland White Terrier, whom my sister-in-law/dog-groomer affectionately calls a mutt, because she’s missing some AKC papers.   I had a long talk with Kaycie the other day and she taught me a few things.  So I’m letting her share it here.  Without further ado, here’s Kaycie:

    Woof, woof, arrh, arf, ARF, arroooooo.

    (Uh Kaycie, you need to use English here.  Not everyone is versed in doggie-speak.)

    Hi, my name is Kaycie.  Karen went upstairs to take a hot bath and read a book.  I’m going to share a few things that I’ve observed in my life that you can apply to yours.

    First of all, I see you people running around a lot, darting from one activity to the next.  The garage door keeps going up and down, up and down, several times a day.  It keeps interrupting my sleep.  And you know what happens when you don’t get enough sleep?  That’s right.  You end up with a cranky dog.  I’m more likely to snap at you when I don’t get my zzzz’s.

    But, while we’re on the subject of sleep–let’s talk about naps.  For some reason, I don’t see you people getting enough sleep, nor taking enough time out for naps.  Don’t you know that a nap does wonders?  When you’re tired, ya gotta slow down and take a nap.  Heck, when I take a little ten-minute power nap, then I’m up and ready to chase some rabbits.  I get a lot more speed on me that way.  Every day, I gotta get those varmits outta the yard for Karen.  She doesn’t like it when her pretty yellow flowers are chomped on.

    Speaking of being on top of my game, every now and then I like to take some time to zone out–or as you people call it– meditation.  Sometimes I get really stressed out when I can’t find my bones among the mess in the house.  I take a few minutes to calm my mind and then I fire up the nose again.  I can usually find my bones that way.

    I also find that it’s important to learn something new each day.  Not only can I follow commands by voice, but I know them in sign language too.  I get a little pissed at my master though, because in the winter time, she’s inside signing “go to the bathroom” and I’m outside in the cold trying to take a dump.   But anyway, I was talking about learning new stuff.  That’s how I keep my mind sharp– I like to try new things.  I tried taking up guitar, but discovered that I didn’t have any talent in that department. 

    Of course, Karen doesn’t like everything I try.  For instance, I once tried to chew the leg on a kitchen chair.  Karen got all cranky and there were a couple of “No’s!” hollered at me.  I learned to let that one go.

    I’ve learned that sometimes you gotta love your enemies.  Grandma has a big collie named Sonny.  I don’t like Sonny all that much–he likes those Milk Bones out of a box and I won’t have anything to do with those tastes-like-paper-fake-looking-bones stuff.  But somehow, we get along and every now and then, we’ll head to the yard and chase away the squirrels together.

    Everyone needs a friend or two to hang out with.  I hang out with my dog pals, Buddy and Pepper when they come over to visit.  Once in a while, we get on each other’s nerves and have a brawl–especially when one of them digs into the wrong supper bowl–but we find a way to get over it and buddy up again.

    But you know what’s important in life?  The ones you love.  I get all excited when the kids come home from school.  I jump all over and tell them I love them.  When Grandma Griffard comes to visit, even though she’s not crazy about dogs, I roll over and let her rub my belly and she finds a way to love me too.   Every night, I hop into bed with Karen and curl up at the nook in the back of her knees.  Once in a while, I go over and give Joe a nudge.

    Life is good.  Enjoy it.

     

     

     

     

     

  • Discovering the Deaf Gene in my Family

     

    From left to right: Thomas Friedman, Penny Friedman, Dr. Andrew Griffith, Karen Putz and Anne Madeo  

    For many years, my family was unique when it came to stories about hearing loss.   Everyone in my family, for five generations, was born with hearing in the normal range.  My Mom started losing her hearing as a teen.  She became deaf at the age of 27.  “I was at a family BBQ and all of a sudden, I realized I couldn’t hear anything,” Mom shared.  “I could see that lips were moving, but no sound was coming out.”  Just like that, my Mom became deaf.   Her five siblings also were deaf or hard of hearing.

    I have four older siblings.  My sister, Linda, was almost three years old when she fell off of a chair and hit her head on the corner of a baseboard.  Later that week, my Mom noticed that she wasn’t responding to people.   She began to stop talking.  She was diagnosed with a profound hearing loss.  My brother, Dennis, grew up with normal hearing and at the age of 36, he was hit on the head by a wooden beam at work and woke up in the hospital with severe hearing loss.  My sister, Jeanie, grew up with a unilateral hearing loss and around the same age as my mom, began losing more hearing.  In her mid-forties, she slipped on a rug and became profoundly deaf.   My brother, Kenny, developed a moderate hearing loss in his 40’s. 

    I became very sick with a high fever as a child and my parents believe it was that illness which triggered my hearing loss when I was in elementary school.  My first hearing aid was given to me when I was nine- but I only wore when at school.  I found that it caused headaches and tinnitus and I often took it off after school and never touched it during the summer.   When I was 19, I was waterskiing on my bare feet at a high speed and fell sideways into the water.  For weeks, I thought I just couldn’t get the water out of my ear.  I had become profoundly deaf.  From that point on, hearing aids were a constant thing in my life.  Years later, my brother Kenny also lost some hearing from barefooting.

    Whenever I would share my family’s story about how we all became deaf and hard of hearing, people would be incredulous at the events that lead to hearing loss.  “Y’all need to stop banging your heads,” one person remarked.

    I knew that genetics obviously played a part, as there were so many family members sporting hearing aids.  We went through the testing at Gallaudet for the Connexin gene and it came back negative.

    My friend, Tina Childress, an audiologist, said to me one day, “I think your family has Large Vestibular Aqueduct Syndrome (LVAS).”

    So off I went to the ENT to take a pretty picture of the inside of my head.  “No, you don’t have LVAS,” said the radiologist who read the scan.    

    I then sent the CT scan results to Anne Madeo, a genetic researcher at the National Institute on Deafness and other Communication Disorders, part of the National Institutes of Health, to have them take a look.   Anne asked some questions about our family history to construct a “pedigree”, a term that researchers use to describe a family in graph form.

    “Because the inheritance of the hearing loss looked as though it was coming from women through to all of their children, but from none of the men to their children, we thought there was a very good chance that it was due to a mutation in one of the mitochondrial genes,” said Anne.

    With our permission, Anne assembled a team (Andrew Griffith, Penny Friedman, and Thomas Friedman)  from NIH and we all gathered at my home.   The team spent the day collecting information from each family member and drew blood for the genetic testing.   

    We learned that we are the third family in the world identified with a mutation in the mitochondrial gene.  The specific mutation is called 7510T>C.  The most interesting thing to family members was learning that our specific mutation, like all mitochondrial genes, is passed through female family members. There is almost a 100% guarantee of passing the mutation from a female to the offspring, but not from the males. 

    What this means for my children is that my daughter will have children with this gene, but my sons will not.

    People have asked me why we pursued the genetic testing in our family.  There were two reasons for it.  One of my nieces was hard of hearing.  My other niece began to suspect that she might be losing her hearing.  However, tests showed that her hearing was within normal limits.  A nephew also had an episode where he thought he was losing his hearing as well.  So we wanted to figure out the genetic pattern and see how the gene moved through the family.  The other reason was simple:  after years of questions from other people, we wanted to see if we had a name for the gene.

    The results were surprising for my nieces and nephews.  The niece who thought she had the gene was relieved to find out she didn’t.  While she was happy to find out that she didn’t have the gene, she also felt a sense of “survivor guilt,” in knowing this information.   My other niece has it and will pass it on to her children should she have kids.  My nephews didn’t participate in the research, but from what we know about the gene, we know what we can conclude for each of them.  One nephew has the gene, the others do not.  The biggest shock came to me months later, when a cousin of mine obtained hearing aids and then mentioned that her kids were struggling in the classroom.   I suddenly realized that the gene was in their family as well.  Her grandmother and my mother were sisters.

    “I think sometimes, on a really fundamental level, it can make you wonder who you are when you learn something like this about a specific gene mutation” said Anne.  “Even though I know and try to tell people that we all carry gene mutations-they don’t define us.  Yet, suddenly you’ve learned something fundamental about yourself that you didn’t know before.”

    Sometimes learning about genetic results can shake up a family or cause individuals to blame one another.  “That probably happens most in families that weren’t doing well already,” explained Anne.  “Maybe it wasn’t a strong marriage, maybe the diagnosis in the family was really tough, maybe they’re going through an already stressful time.  Not every family (at all) starts pointing fingers.”

    For my own family, the information we learned was simply an interesting piece of the puzzle that has been unfolding over the years.   My only beef with the researchers is that they didn’t give this gene a cool name.  So in my family, we’re naming this gene in honor of my mother and grandmother:   the Valle gene.

    For more information on genetic research:

    http://www.nidcd.nih.gov/

    http://www.nidcd.nih.gov/research/scientists/griffith.asp

      Dr. Andrew Griffith with my Dad

     Penny Friedman and my brother, Kenny