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Vivie’s Story

April 5th, 2009 by | Tags: , , | Comments Off

Vivie and I’ve been corresponding to each other through e-mails and Facebook to share concerns regarding the medical coverage in Greece.  Vivie was born with hearing loss and used hearings aids throughout her life and learned to hear and to speak in her native language, Greek, and then received a cochlear implant later in her life.  Vivie was generous to write her story, in her second language, English.  Here is Vivie’s story:

I was born February, 1983 , in Greece , an healthy baby girl.  I already had an older 18 month brother who adored me right from the start..my mother thought , since maternity ward  that something was wrong with my hearing, and at that time nobody knew about infant screening programs.Everybody , my father , extended family , doctors , assured my mother that I just was a deep sleeper.and that probably I had fluid in my ears.but my mother was still suspicious – call it motherly gut instinct.  She used to tell my brother off for making noise when I was asleep , but she did saw that I NEVER startled , except when I was on the floor (backtracking to it now I probably felt the vibrations) and some door slammed.nothing else.

At that time there was not a hearing loss chapter ANYWHERE in Greece , so my parents decided to visit the Memorial Children hospital , the hearing loss unit in New York.  I received my diagnosis when I was just nine or ten months old, and also gotten bodyworn hearing aids and a leather ‘bra’ like contraption to wear it.  Nobody knew from where my deafness originated as my family was hearing.

My family decided to raise me oral , and I did learn to hear what I could from my hearing aids , and also have the aid from lipreading.I recall getting frustrated when someone covered his lips to tell a ‘secret’ as I couldn’t distinguish what they said.School was far harder that I could manage , and unlike US , it didn’t had any support services and I was sent to kindergarten a year late.My family was paying for a speech therapist , and also an teacher that private tutored to help me get through school. Sometime along that route I got BTE aids , and I loved them as they were not heavy as the bodyworn ones.School was a struggle though , so was college , and I never received support service through school or college.I never knew what a FM system was or interpreter , or a notetaker.But I persevered and tried to do my best.At high school I received an digital BTE HA , and it made much difference ( by that time my right ear had gone profoundly deaf ) so I was only unilateral by then.My parents had heard about the new hearing department at a near hospital and I was assigned there although it was 6 hour trip one way.They also heard about the CI program , but nobody trusted it , and anyway I was hearing pretty well with my aid.Then , two years ago , one prospect that I never thought it could happen , happened.I lost the hearing in my good ear , it happened so gradually, so that I didn’t got really aware of that until I was really struggling.My family was preparing to buy a better hearing aid as the one I had , I had it for 10 years.At that researching phase , a friend that had got implanted, told me about all these good things she was hearing with CI ( she had Freedom too ). I did  an initial research and found that my insurance , although it didn’t cover hearing aids , it DID cover CI , although only one per person.So I decided to go through the candidancy proccess , and if I was denied , I’d just buy the new hearing aid.By that time I lived alone in a city that had an excellent CI surgeon for Greece, and the CI team was willing to rush my proccess so if I was accepted , I would still be covered under my dad’s insurance.and on my birthday , the present from CI team was that I was approved and put in the wait for surgery.I couldn’t be happier.I celebrated that birthday with a BANG with my friends…I was to be implanted at summer holidays or  early fall.So I settled for the long wait , and in the meantime I started leisurely  reading blogs of implanted children and adults.I felt very hopeful.I started my own Greek CI blog , as nobody had done that yet.

Suddenly I was to be implanted on May 22nd , and I did.Since then I never look back.I could hear myself eating.LOL I was a loud eater, everybody told me.  Since then I’m trying to be quieter! I could hear the frogs one day in my walk.I could hear the pressure cooker whistling.  I could hear laughing.and that WAS infectious. I’ve embarked in the journey of a lifetime , and I’m loving it.Now I’d like to go bilateral , but sadly , that isn’t provided here…Maybe someday..This summer though , I plan to go to the beach and hear the waves , and the birds squaking for some thrown bread.To be able to locate my cell phone by hearing alone (my brother always hides it as a joke).  For me , the only loss is that my CI doctor said I can’t go snorkeling.Oh well , I don’t mind , the gain is SO much bigger.And everybody says that I’m talking almost perfectly.Since then I’m awaiting for my next step , next sound , next experience.

Rachel’s note: Not being able to snorkel as a cochlear implant user is a misinformation.  Cochlear implant users not only can swim and snorkel, but also scuba dive – just as long as they don’t go down further than 82 feet.  Here is the information enclosed on Cochlear’s website – CLICK HERE. Vivie said that she will ask her surgeon about this information.

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