Margaret Buth - A pioneer in the Hearing Loss World

Margaret is 94 years old and a member of our Hearing Loss group out here in Wales.  In a lot of ways, she is younger at heart than the rest of us are.  Our group ranges in age from 29 to 94. 

We recently learned that Margaret has Ovarian Cancer.  She is in the final stages of this terrible disease.  Back in August, we had her do a presentation at one of our meetings.  Below is the transcript from CART of her views as well as how she developed ways to live in the hearing world.

MARGARET:  I WAS NOT BORN DEAF.  MY HEARING LOSS IS DUE TO MEASLES AND SCARLET FEVER, WHICH I HAD AROUND THE AGES OF 5 AND 7.  MY LOSS WAS THEN ONLY IN THE HIGHER RANGE.  I FOUND I COULD NOT HEAR WHISPERS, BIRDS, WHISTLES, NOR HIGH MUSICAL NOTES.  I DID NOT TELL ANYONE AND SO BEGAN MY YEARS OF BLUFFING.  THAT MEANS PRETENDING TO HEAR AND UNDERSTAND WHEN YOU DON'T.  IT IS NOT GOOD TO DO THAT.

  IT DOESN'T HELP YOU IN ANY WAY.  IT ALSO MADE ME REALIZE I HAD TO HELP MYSELF IN ANY WAY I COULD, SO I WATCHED PEOPLE WHEN THEY TALKED AND GOT AS CLOSE TO THEM AS I COULD.

  IN SCHOOL IT MEANT GETTING A FRONT SEAT CLOSE TO THE TEACHER.

  AT HOME WHEN I DIDN'T HEAR SOMETHING, MY DAD WOULD SAY, YOU CAN HEAR IF YOU WANT TO.  THAT I HEARD MANY TIMES IN MY LIFE.  IT IS TRUE THAT SOMETIMES YOU DO HEAR SOMETHING, BUT YOU DON'T ALWAYS UNDERSTAND.

  FIRST I HAD A MINOR HEARING LOSS.  I WAS ABLE TO HEAR MOST SOUNDS AND IT DIDN'T SEEM TO AFFECT MY SPEECH TOO MUCH.

  IF YOU WONDER WHY MY HEARING LOSS WAS NOT DETECTED IN SCHOOL, IT WAS BECAUSE THEY DID NOT TEST HEARING AS THEY DO NOW OR NOT AT ALL.

  I REMEMBER AT THE SULLIVAN SCHOOL WHICH I ATTENDED AFTER WE MOVED OUT THERE, THEY WOULD HOLD SOMETHING UP AND ASK IF YOU CAN HEAR IT AND I WOULD SAY YES.

  AND THEY WOULD ASK YOU TO FACE THE BLACKBOARD AND I WOULD TRY TO CATCH MY EYE ON IT AND I WOULD CHEAT ALL THE TIME BECAUSE I DIDN'T WANT TO ADMIT THAT I HAD A HEARING LOSS.

  THROUGH THE YEARS I DEVELOPED MANY COPING STRATEGIES.  I BECAME A FAIRLY GOOD LIPREADER.  SOME HEARING IMPAIRED PEOPLE TELL ME THEY CANNOT LIPREAD.  IT IS NOT EASY.  YOU NEVER GET EVERYTHING THAT IS SAID.  EVERYONE TALKS DIFFERENTLY.

  I HAD SOMETHING THAT CAME THROUGH THE MAIL AND I WOULD LIKE TO READ IT TO YOU.  IT'S CALLED SUGGESTIONS FOR FAMILY AND FRIENDS.

  IT MAKES A BIG DIFFERENCE IF THE PEOPLE AROUND YOU KNOW HOW TO MAKE IT EASIER FOR YOU TO UNDERSTAND THEM.  HERE ARE SOME SUGGESTIONS YOU CAN GIVE THEM.

  GET MY ATTENTION BEFORE TALKING TO ME.

  IT ALLOWS ME TO GET READY TO LISTEN.

  PLEASE DON'T SPEAK TO ME FROM ANOTHER ROOM.  IT SIMPLY IS TOO DIFFICULT WHEN YOU'RE OUT OF SIGHT.  I WON'T UNDERSTAND YOU.

  DON'T TALK FAST.  I OFTEN HAVE TO FIGURE OUT WHAT SOMEONE SAID.  I SIMPLY CAN'T KEEP UP WITH A FAST TALKER.

  ONE OF MY MOST IMPORTANT TIPS:  DON'T TALK FAST.  YOU'LL TELL SOMEONE THAT AND THEY'LL SLOW DOWN AND THEN THEY START TALKING FAST AGAIN.  (LAUGHTER).  THAT'S OKAY.  THAT'S LIFE.

  FACE ME WHEN YOU TALK TO ME.  I UNDERSTAND MORE IF I CAN SEE YOUR FACE.

  WHEN PEOPLE WEAR SUNGLASSES, I SEEM TO HAVE A HARDER TIME UNDERSTANDING THEM.  IT SEEMS TO HELP WHEN YOU SEE THE WHOLE FACE AND THE EYES.

  ANOTHER THING.  BLACK PEOPLE ARE ARE VERY HARD FOR ME TO UNDERSTAND.  I THINK BECAUSE IT'S ALL BLACK COLORS.

  FACE ME WHEN YOU TALK TO ME.  I UNDERSTAND MORE IF I CAN SEE YOUR FACE.  PLEASE DON'T CHEW GUM, SMOKE, OR COVER YOUR MOUTH WHILE SPEAKING.

  COME CLOSER.  WHEN YOU STAND CLOSER, YOUR VOICE IS LOUDER AND IT'S EASIER.  SOMEONE THREE FEET AWAY IS TWICE AS EASY TO UNDERSTAND THAN EIGHT FEET AWAY.

  TURN DOWN THE NOISE.  TURN DOWN THE RADIO, AIR CONDITIONING AND RADIO.  IF YOU CAN'T, PLEASE UNDERSTAND THAT HEARING IN NOISE IS MUCH HARDER FOR ME THAN IT IS FOR YOU.

  JUST BECAUSE I HEARD YOU DOESN'T MEAN I UNDERSTOOD YOU.

  HEARING IS NOT THE SAME AS UNDERSTANDING.  THAT'S WHY PEOPLE WITH ACCENTS AND PEOPLE WHO MUMBLE OR TALK FAST ARE DIFFICULT.  I HEAR THEM.  I JUST MAY NOT UNDERSTAND THEM.

  IF I DON'T UNDERSTAND ANYTHING YOU SAY, PLEASE REMEMBER THAT I'M NOT BEING RUDE OR DIFFICULT.  I'M JUST HAVING TROUBLE WITH MY HEARING.

  IN DEALING WITH PEOPLE WHO ARE RUDE OR TEND TO IGNORE ME, I TRY TO BE AS NICE AS I CAN JUST BECAUSE THEY ARE RUDE, DOESN'T MEAN I HAVE TO BE.

  I'M SAYING IT WILL NOT BE FRUSTRATING AT TIMES, BUT WE CAN OVERCOME AND BENEFIT FROM THEM.

  WE ARE LIVING IN A HEARING WORLD AND HAVE TO ADJUST, LIKE IT OR NOT.  YOU WILL ALWAYS FIND PEOPLE WHO ARE IMPATIENT, NOT UNDERSTANDING, BUT YOU WILL ALSO MEET PEOPLE WHO ARE VERY HELPFUL, KIND, AND UNDERSTANDING.  BLESS THEM.

  THE BIBLE SAYS SOFT ANSWER TURNETH AWAY WRATH.

  WE WERE TOLD TO BE ASSERTIVE, NOT AGGRESSIVE.

  BEING ASSERTIVE IS BEING CONFIDENT, SELF-ASSURED AND TELLING OTHERS WHAT YOUR NEEDS ARE.

  DON'T LET RUDENESS MAKE YOU ANGRY OR UNPLEASANT.  SOMETIMES YOU CAN EVEN BRING HUMOR TO THE SITUATION.

  THE MORE PLEASANT I TRY TO BE, THE MORE I CAN DIFFUSE THE SITUATION.  WE CAN'T ALWAYS EXPECT PEOPLE TO ACCOMMODATE US BECAUSE WE'RE HEARING IMPAIRED.  LIFE IS WHAT YOU MAKE IT.  IT CAN BE GOOD.

  I HAVE FOUND THAT BEING MORE OPEN ABOUT MY HEARING LOSS HELPS ME TO GET ALONG BETTER WITH EVERYONE.  I SHOULD HAVE DONE THAT LONG AGO.  I THINK I'LL MENTION HERE THE FACT THAT WHEN I WAS YOUNGER, I WAS VERY INSECURE AND WITHDRAWN, ESPECIALLY IN GRADE SCHOOL AND HIGH SCHOOL.  WHO WOULD WANT A HEARING IMPAIRED FRIEND?  BUT I FOUND SOMEONE WHO DID.  (LAUGHTER).

  WHEN MEETING NEW PEOPLE, I INTRODUCE MYSELF AND TELL THEM I'M HEARING IMPAIRED.

  WHEN I JOIN A GROUP, I LOOK FOR AN OPENING OR A PAUSE IN THE CONVERSATION AND THEN ASK POLITELY WHAT THEY'RE TALKING ABOUT.  SO I CAN JOIN IN OR ADD A NEW SUBJECT.

  IF YOU SAY NOTHING, THEY WONDER IF YOU ARE ANTISOCIAL OR JUST STUPID.  HEARING LOSS NEEDS AN EXPLANATION BECAUSE IT IS AN INVISIBLE HANDICAP.

  I OFTEN WONDER WHAT A YOUNG MAN  WHO I HAD A DATE WITH THOUGHT WHEN I DIDN'T ANSWER OR ANSWERED INCORRECTLY.  YOU CAN'T LIPREAD IN THE CAR.

  THERE IS A COPING STRATEGY.  USE THE DOME LIGHT OR A FLASHLIGHT.  YOU CAN FLASH THE LIGHT TO THE TOP OF THE CAR AND YOU CAN SEE THE PERSON YOU'RE TALKING TO.

  I MET A MAN AND IT EVENTUALLY LED TO MARRIAGE.  I DIDN'T THINK ANYONE WOULD WANT ME.  AFTERALL, I CONSIDERED MYSELF DAMAGED GOODS.

I LEARNED HOW TO COPE IN PUBLIC PLACES AS I WENT ALONG.

  A TABLE OR BOOTH IN A RESTAURANT AGAINST THE WALL IS BETTER.  IT SEEMS TO DEADEN SOME OF THE SOUND AND IS HELPFUL.

  WHEN YOU'RE IN A ROOM WITH WINDOWS, SIT OR STAND WITH YOUR BACK TO THE WINDOW, SO THE LIGHT IS IN BACK OF YOU.  THE LIGHT SHOULD FALL ON THE SPEAKER'S FACE.  VERY HELPFUL WHEN READING LIPS.

  A MIRROR ON THE DASH OF YOUR CAR IS ALSO VERY HELPFUL.  MY DAUGHTER AND I, FRIENDS AND MYSELF USE THIS.  IT'S VERY, VERY HELPFUL.  THAT WAY THE DRIVER DOESN'T HAVE TO TAKE THEIR EYES OFF OF THE ROAD TO 'HEAR' WHAT A PASSENGER IS SAYING.  YOU JUST READ THEIR LIPS VIA THE MIRROR ON YOUR DASHBOARD.

  A SENSE OF HUMOR IS ALWAYS A LIFE SAVER, ESPECIALLY WHEN YOU HEARD -- WHEN WHAT YOU HEARD IS DIFFERENT THAN WHAT WAS SAID.

  IT IS GOOD TO HAVE A SUPPORTIVE SPOUSE, RELATIVE, OR FRIEND, BUT DON'T LET THEM DO TOO MUCH FOR YOU.  WHILE WORKING WITH HANDICAPPED AND DISABLED PEOPLE AT BETHESDA, I WAS TOLD LET THEM DO EVERYTHING THEY CAN FOR THEMSELVES.  THE SAME APPLIES TO THE HEARING HANDICAP.  BECOME MORE DEPENDENT UPON YOURSELF AND LESS UPON OTHERS.  TAKE ADVANTAGE OF ALL THE TECHNOLOGY AVAILABLE NOT JUST HEARING.  I LIVE ALONE AND GET AROUND WELL.

  I JUST USE A  TTY IN WHICH YOU CAN TYPE BACK AND FORTH WITH A DEAF PERSON.  IT IS SO MUCH BETTER THAN A REGULAR PHONE.

  I HAVE LIGHTS THAT FLASH WHEN THE DOORBELL RINGS AND I HAVE A SMOKE ALARM WITH THE STROBE LIGHT AND A SPECIAL ALARM CLOCK THAT AWAKENS ME WITH A FLASHING LIGHT.

  I HAVE REAL TIME CAPTIONING AND COMPUTERS, WHICH ARE A GOD SEND.

  IN MY LATE 40'S I NOTICED I WAS LOSING MORE HEARING AND STARTED WEARING HEARING AIDS.

  I AM NOW DEAF WITHOUT MY HEARING AIDS.  THEY GIVE ME SOME SOUND, BUT NOT UNDERSTANDING.

  IN CLOSING, I WOULD LIKE TO READ ONE OF MY FAVORITE VERSES, THE SERENITY PRAYER.

  GOD, GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE, THE COURAGE TO CHANGE THE THINGS I CAN, AND THE WISDOM TO KNOW THE DIFFERENCE.

  THEN THERE WAS SOMETHING IN THIS BOOK THAT I THOUGHT WAS WORTH REPEATING TOO.

  EACH AND EVERY ONE OF US HAS A PROBLEM OF ONE SORT OR ANOTHER.  IT IS HOW WE COPE WITH THAT PROBLEM THAT DETERMINES BOTH OUR OUTLOOK AND QUALITY OF OUR LIVES.

  AND I THINK THAT'S ALL.

  IF THERE'S ANY QUESTIONS, I'M GOING TO SIT DOWN AND READ THEM.  I THINK, AS I WAS TELLING TAMI, MAYBE THERE ARE OTHER PEOPLE WHO COULD SAY SOMETHING ABOUT THEMSELVES, HOW THEY COPE WITH THEIR HEARING LOSS AND SO FORTH.

Margaret went on to say that when her husband was still alive, she would have him answer the phone or make phone calls for her since she could not hear on the phone and they had not come out with the technology that we have now.  When she would ask them what they had to say, he would reply 'Nothing much'.  So much for trying to communicate via the phone for Margaret in those days...

I have learned more from this woman than from anyone else that I know.  She always arrived at our meetings (she drove herself from Sullivan, WI) in a jovial mood with the latest news on what she had learned on hearing loss that month.  She also attended the Lions Camp up in Resholt, WI every August for many years.  She was known for her 'last night at camp strip tease act'.  People are still talking about that lady in her 50's, 60's, 70's or 80's that would end up with only her long johns on and a feather boa. 

Imagine living for all of those years and only being able to communicate with others by lipreading.  This lady never got frustrated and is a true inspiration for all of us.

Margaret, we thank you for sharing with us all that you know so that we can also live a postive life and not let our 'invisible handicap' get the best of us.  You are in our thoughts and prayers.

Copyright 2009 Tami Klink

CART transcript provided by Margo Lucas, CART Provider for HLAA Lake Country Chapter (seeingtheword@wi.rr.com)

Used with permission from the HLAA Lake Country Group