Friday, February 04, 2005

A mini-biography, so to speak...

On January 4th, I underwent surgery for the Nucleus® 24 Contour™ cochlear implant… and I am *sooo* excited and nervous and scared and curious and everything all at the same time! I'm not sure where to start, so I'll just get the basics out of the way…

I am 27 years old and have been hard of hearing my whole life. My parents first discovered my hearing loss when I was about 3 years old – and that's when I was fitted with hearing aids. Nobody has ever been able to tell me how/why I lost my hearing, although there are two theories: (1) my mother was exposed to Rubella (German Measles) when she was pregnant with me; (2) I had a violent reaction to a smallpox vaccine I received when I was still a baby (these were routinely given out until 1978 in the former Czechoslovakia, where I was born). Regardless of what the cause of my hearing loss is, it's irrelevant now.

My family immigrated to the United States in 1983 when I was 6 years old and that is when I was "officially" diagnosed with sensorineural hearing loss in both ears. As time went on, my hearing loss progressed, but fortunately, I was able to function pretty well with hearing aids. I was mainstreamed all through grammar, middle and high school. I used my HA's and an FM System to get by. I graduated college (The College of New Jersey) with a B.A. in psychology and finished graduate school (Montclair State University) with an M.A. in counseling. I received both degrees with an ‘A’ average! This is something I'm *very* proud of, considering the circumstances.

Now I work for a center for independent living helping people with disabilities obtain services through the ADA. It is a good agency to work for, but ironically, it is not something I want to spend the rest of my life doing. I was planning to go back to school to become licensed as a mental health counselor, but circumstances beyond my control put a damper on those plans… temporarily.

On October 2nd, while my husband and I were at a friend's wedding, I lost almost all the hearing in my left ear. First, I heard an awful ringing sound that would not go away (tinnitus) and then BAM! Nothing. This all happened in the span of a weekend… and to my "good" ear, no less. Initially, I believed that my hearing aid had malfunctioned and that it was fixable. Well, that was not the case. An otolaryngologist's check-up confirmed the worst: I had suffered sudden onset hearing loss in my left ear for no known reason -- from 95db to 105db (my right ear remains at about 100db).

Naturally, I was DEVASTATED... and not prepared to hear the doctor say the words, "Have you ever considered getting a cochlear implant?" First, I barely heard him, but thanks to my speechreading skills (which I have relied on my whole life), I understood what he was saying. Second, I am ashamed to admit that the idea of a cochlear implant had never occurred to me. I couldn't even imagine being "one of those CI people." It was a narrow-minded way of thinking, I realize that now, but that was my attitude up until that point.

Fast-forward 3 months later -- after much research and studying -- I am proud and excited to be a Nucleus® 24 Contour cochlear implant recipient. My surgery was performed at Saint Barnabas Medical Center in Livingston, New Jersey by Dr. Laura Downey -- a *WONDERFUL* woman. The hospital stay was something else, to say the least. My staples were removed less than a week later (8 of them), but it wasn't too bad. The worst part of the surgery's after-effects was the dizziness -- imagine feeling drunk without any alcohol. Also, the left side of my tongue went numb. Food has a “slimy” feel to it because I can’t really taste with half my tongue, but that is supposed to go away eventually. The aching, throbbing pain at the incision site was no fun, either. Tylenol with Codeine was my best friend for about a week after surgery. Now that a scab has formed, the incision site really itches, so I’m anxious for it to fall off and finally heal.

Fortunately, my whole family (mother, father, younger brother) and husband of 2 years (the day of the surgery was our anniversary!) have been extremely supportive. Even my friends surprised me with their well wishes and enthusiasm - both during and after the whole ordeal. While I was home recuperating, I took the time to put together a web site with pictures and informative links so that everyone could see what I was going through. It is located here: Linda's Cochlear Implant

Now I am anxiously waiting for my hook-up date -- February 7th!!! I have so many questions and so many fears and so many hopes, I don't even know how to put them to words. On February 2nd, I met with my audiologist (Judy, another wonderful woman), who gave me the "CI orientation" and even allowed me to take my SPRint™ processor home (not turned on, of course) so I can get used to wearing it. I've had it on every day since then and think it is SOOO cool! The magnet does not feel weird at all (like I thought it would), but the body-worn "box" is a bit cumbersome. Although I am getting used to it, I can't wait to start wearing the ESPrit 3G BTE processor (I’ll get that 2 days after my initial hook-up).

I have not met anyone in person with a cochlear implant (yet), but have been reading a wonderful book to help me become better acquainted with the new journey I am about to embark on. This book is called Bridge to Sound with a 'Bionic' Ear by Cynthia Farley. I highly recommend it to *anyone* who has any questions whatsoever about cochlear implants.

I guess that is my story. I hope I didn't babble too much, or sound too wimpy, but I know everyone's experience is different. Allowing myself to be a little more dramatic than usual is helping me deal with everything in a better way. It also feels good to be able to share this story with others in hopes that they will be able to make a better decision about whether or not to get a CI themselves. For those that still aren't sure, I say, "GO FOR IT!"

1 comment:

  1. Anonymous10:57 AM

    What a fabulous story!!! :o)