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Susan’s Story

 

5/5/2008.  Today, I am celebrating my third anniversary of receiving my first Cochlear Implant. I am so grateful to God that technology has given those of us with hearing loss and are deaf the ability to hear again.  Please allow me to share my journey as I reflect on the last few years...

I was diagnosed with progressive sensorineural hearing loss when I was 36 yrs old.  I suspected I had a hearing loss noticing that I preferred one ear over the other using the telephone, constantly asking others to repeat what they said and having the television volume cranked up.  I had my hearing tested and it confirmed that I had asymmetrical hearing loss, meaning that one ear had more loss than the other.  It is still a mystery as to the cause of this hearing loss.  There was no way that the doctor could predict when or if I would go completely deaf.

After using hearing aids for years, my progressive loss got to where the aids were no longer helpful because I could only recognize 40% of speech.  I could still hear things like pots and pans clanking, the Air Force flying over the house and the garbage truck.  What I lost was my ability to have conversations over the phone and conversations with people in person unless they were three feet from me and facing me so I could read their lips.  This was very isolating and depressing not being able to chat at will with family, friends or clients.  After having another hearing test, the audiologist told me that I was a candidate for the cochlear implant.  I didn't realize at that time how bad my hearing was and that I was considered a deaf person.  There are no deaf people in my family!  I thought being deaf meant that you didn't hear anything at all.  I was extremely eager to have my hearing restored. A couple of months later, I had the day surgery and a month later my external speech processor was turned on. Each person that gets a cochlear implant has different experiences in their ability to rehabilitate their lost hearing.  It is a process that takes time for the brain to relearn sounds that in my case were stolen from me over the years.  The rehabilitation process is faster for those who have shorter time period of deafness.  Those people who were born deaf or lost hearing many years ago can expect to have longer rehabilitation.  Whichever the case, it is so worthwhile to get the cochlear implant.  My life and relationships are now restored since I could now understand speech.  I have so many favorite sounds.  I laughed aloud the first time I flushed the toilet, forgetting what it sounded like for the water to swirl around the bowl.  It was exciting to hear things again!

The first implant was so successful that after the hearing in my other ear took a rapid decline 18 months later, I inquired about getting another implant.  Within 20 minutes, my insurance had approved the surgery.  I received the second implant in December 2006. 

I am now known as a bilateral cochlear implant recipient.  Without working external speech processors and batteries, I am totally deaf.  Using both cochlear implants, I now hear very well in most environments.  I have four programs on each speech processor that I can change to adapt to different situations.  The most exciting thing for me is that my confidence has been restored to be able to have conversation with anyone anywhere without the struggle and strain to understand what they are saying.  Using the telephone is still a challenge for me.  I am experimenting with my different settings and also different phone units.

In an effort to help others like myself who suffered with hearing loss and didn't know where to turn for help, I am now a volunteer/advocate of the Cochlear Awareness Network.  If you or someone you know would like to receive more information about Cochlear Implants or would like someone to talk with about their hearing loss experience, I will be available to help.  My email address is:  SlipcoverSusan2@yahoo.com. Please feel free to forward this email onto others in your address book.

As you already know, this is just a nugget of a much bigger story.  In hindsight, I clearly can see how God's hand has been in every area of my life to prepare me for what He has next.  I thank the Lord for loving me and being faithful to provide for me.  One of my favorite verses is, "Trust in the Lord with all your heart, lean not to your own understanding.  In all your ways acknowledge Him and He will direct your paths".  Special thanks to my Ear Nose Throat Specialist, Dr. Stephanie Moody-Antonio, Audiologists Kate Berenguer and Ashley Wampler at Eastern Virginia Medical School in Norfolk, VA. 

Now you know I have another reason to celebrate Cinco de Mayo!!!

Susan



Dr. Juan Montero retires from his medical practice to focus his efforts on his family, his humanitarian service and CHEAR.  See the full Virginia Pilot article here:   http://content.hamptonroads.com/story.cfm?story=125071&ran=55090

 


Blair’s Story 

submitted by her mother                                           

Blair was born October 18, 2000 in DePaul Hospital in Norfolk, VA.  She was given the hearing test at birth and she did not pass the test.  We were directed to have her retested at CHKD once we were home.  At that test we were told that Blair was developing normally and there was no reason for concern.  However, there were signs that we had a unique child on our hands as early as age 2.  Blair did not come when called and when we entered her room to call her again, she would be startled.  She did not speak as clearly as her older brother, so we were constantly correcting her.  When she entered preschool, discipline began to be an issue.  Teachers reported that Blair did not pay attention or follow directions.  After several incidents where Blair upended tables and chairs and incidents of biting and tantrums, we knew something was definitely awry.  Blair had hearing screen in preschool and reported abnormal findings, among comments such as, “unintelligible speech” and “uncooperative subject.”  We were urged to seek further testing through her pediatrician’s recommendation.  In our ENT’s office, we were told that Blair definitely had hearing loss.  We underwent MRIs and other tests at CHKD to determine the extent of her disability and were told that Blair had been moderate to severely deaf since birth. 

 

When Blair’s prognosis was finalized I called the insurance company to determine how we would pay for the hearing aids that Blair would need in order to participate in a hearing world.  I was told that Optima would not cover the equipment as it was not “essential to life”.  The service person told me that I would need to contact a legislator if I wanted to change the policy.  I began calling every legislator I new.  I found that the only legislation to require coverage of hearing aids for minors expired the year and the month we found out about Blair’s need.  Freshman Delegate John Cosgrove was our greatest hope.  He vehemently supported our request to sponsor a bill mandating coverage for minors and he worked in the House of Delegates to that end.  Unfortunately, the bill was tabled in committee.  We have not seen action on the bill since that time.  With the budget constraints of the past two years, I understand the difficulty all state legislators have in garnering support for any bill that will potentially cause a rise in any money spent by their constituents, no matter how noble the cause.  I continued to contact and to pray for the opportunity to turn the opinions of the “powers that be”.

 

In January of 2006, Blair began attending the developmentally delayed preschool through Chesapeake Public Schools.  Since Blair began her educational career, she has blossomed!  Her ability to discern directions and make great strides in her language acquisition has pleased us tremendously.  She loves school and makes friends easily. 

 

The Little Miss Chesapeake pageant was held in April of 2007.  We never dreamed that Blair would actually win the pageant, but she did!  She is the first hearing impaired representative for the city to hold this honor.  We have never made light of Blair’s impairment, but we’ve always told her that she is a completely “normal” human being.  Evidence of her self-confidence can be seen in her willingness to share her “difference” with her classmates at school and in gymnastics, her brave display of “talent” when she performed two sign interpretations of songs at the Chesapeake Jubliee, and her exuberant attitude while attending Miss Virginia functions as a representative for our city. 

 

We are well aware of the fact that Blair is in great company within the hearing impaired community.  One of the nicest compliments Blair received, recently was how she reminded someone of the former Miss America, Heather Whitestone.  I have read Heather’s story and know that though her journey in life was far more cumbersome than Blair’s they share a love for reaching others and an undying spirit that no disability could dampen.  We look forward to the adventures still in store for Blair and the difference she will help to make for all hearing impaired people with the help of the CHEAR organization.


Last modified 5/17/2008 at 8:16PM