Monday, April 11, 2011

Live What's Given

While looking at blogs today, I read a post from our friends over at
<"Ruled By Paws">

She wrote about some of the positive ways blindness has impacted her life. She had read another person's blog talking about these same things and this inspired her to write her own post. The original blogger ended their post with the words "Live What's Given." The posts I have read have encouraged me to write about my own disability.

I was born blind. I went to public school, and my family treated me like any of my other four sisters. Ever since I could remember, my goal was to be a musician. I played many instruments-- guitar, drums, and piano but my true love was singing. I took private voice lessons, sang in choirs, and when I graduated high-school, I packed my bags and went to music school. During the third year of music school I went to bed one night, and woke up the next morning profoundly deaf.

It would not at all a melodramatic statement for me to say that I felt like my world was over. I didn't read braille fluently, all of my books were on tape. I couldn't listen to music, I couldn't read, I was afraid to leave my house. The doctors didn't know what was wrong with me. They tried antibiotics, steroids, ear drops, nose drops, and nothing worked.
Eventually I was diagnosed with
<"Meniere's Disease">
This is a progressive inner ear disease which causes hearing loss, vertigo and tinnitus or ringing in the ear. Most people have it in one ear, but I number among the 5% who has it bilaterally.

This disease caused my hearing to fluctuate from day to day. I'd be profoundly deaf for a while, and then gradually my hearing would come back. However not to the level it was before. One doctor told me I'd have about ten to twenty years before I became profoundly deaf, while another doctor told me that I may not lose all of my hearing. Meniere's disease is the great unknown.

Obviously I couldn't be a music student any more. I was devastated by this because I had never wanted to be anything else. Life, however doesn't stop just because you think it should. I moved on and eventually went to school for a marketing degree (which I hated but I hated everything so...)
In 2003, I packed up my life and move to New Orleans. In 2005, our city was devastated by hurricane Katrina and the subsequent failure of the federal levees and we lost everything. I spent seven months in Memphis, aka Elvisland, and hated every moment of what I saw as forced exile. Eventually I was able to come back home to New Orleans.

On March 26, 2006, I arrived in my new (to us) home in the big stinky. By the middle of May of that same year I was irreversibly, profoundly deaf. Doctors were puzzled but eventually they decided that allergies to the great amount of mold in the city at this time, had triggered my Meniere's disease, and caused such severe damage that the hearing wasn't coming back.

I could no longer use the phone, have conversations with people, hear the fire alarm, read traffic on the street or teach large classes at work. I was too deaf in my right ear to benefit from a hearing aid, but could use one in my left, so I began the long process to try and persuade the government that they needed to buy me one, since my insurance would not.

People had all kinds of ideas about how I should live my new life. Stay home, they said. "You might get hit by a car, let us go to the store for you."
"Get a cochlear implant, then you can be normal again."
"Go home and let your family take care of you."

I was not having any of that. I made up my mind that I was going to learn American Sign Language (ASL) and that I was not going to live the rest of my life being afraid to leave my house, and that I was not going to get some surgery just so that I could be "normal."
Many people told me that I shouldn't bother learning ASL.
"You're blind, you can't see it! Deaf people won't like you, they won't talk to you because you are blind. You aren't going to find anyone who will teach you, or who will talk to you. Just get a cochlear implant!"
I refused to listen, and began work to advocate for ASL lessons from the Department of Vocational Rehabilitation.

In October of 2008, I met my ASL teacher and began learning. Earlier, in April of 2007, I met a deaf woman here in New Orleans and she began taking me to Deaf and Deafblind events all around the city and the state.

The people at these events didn't live their lives in fear, they didn't live them apologizing to the world for their deafness or their deafblindness. They signed, they had friends and families and had rich, active lives full of love and fun and personal growth. At first, when I went to these events I was terrified. I felt awkward and like a huge fumbling moron. I was just sure that everyone was staring at the weird deafblind lady with the dog who was trying to sign. But I never met with a word of unkindness or cruelty. People were patient, and they taught me by their example to be proud of who I am, to live what's given and to do it loud!

In September of last year I was accepted to the Seabeck Deafblind retreat in Seattle, Washington. Not only was I accepted but I was asked to teach a tea making class. I was so nervous. I'd been studying ASL for two years by then, but I was just so afraid of making a mistake. That week in Seattle was unforgettable. I met Deafblind people from all over the world. I participated in activities like tandem biking, boating and even dancing. People came to my tea making class, and I did not make an ass out of myself, and what is more, people said that they liked it! They liked me! When I made signing mistakes, people patiently corrected me, and I learned so much from their kindness.

In June of last year I got an SSP who helps me go shopping, takes me to the doctor and helps me fill out forms, and does many other things with me. The SSP makes my life so much easier.

I use interpreters now for large meetings at work and it is a huge reduction in my stress level.

My deafblindness has changed my life, it has brought me into contact with so many wonderful people who have given of themselves with no thought of what "they'd get out of it." What is more, I have found strength inside myself that I didn't even know I had.

I remember those first weeks after I came back to New Orleans. The distinctive post-levee-failure aroma, the sidewalks crowded with the sodden, moldy remnants of what had been, someone's life. The stories I heard day in and day out of waiting of roof tops for rescue, of floating in filth-infested waters on kitchen appliances, of the ones who didn't make it. Then I lost my hearing, after losing everything I owned, or nearly.

Deciding to live what you are given is not a choice you make once and then move off into the "great happy ever after." When you decide to live what's given, it's a choice you make every morning. You can choose to stay in bed, to bury your head in the pillow and hope it goes away. Or you can decide to get up and get on with life. There are days I took the bed and pillow rout, I won't lie. But at the end of those days, I wasn't a better person for having done it.

People ask me, would I have still moved back to New Orleans if I had known that the mold in this city would leave me deaf in six weeks. My answer is yes. I would rather be deaf in New Orleans than hearing anywhere else in the world.
The novelist, and New Orleans native Poppy Z. Brite said:
"If you belong somewhere, if a place takes you in, and you take it into yourself, you don't desert it just because it can kill you. There are some things more valuable than life."
Hurricane Katrina and the failure of the levees was a dark and horrible time. We all lost so much. However, as I look at my life today, living in a place I love, surrounded by people I love, with services which allow me to live a free and independent life, I would say that I am luckier than I have any right to be.


  1. Thank you so much for sharing. I think it's hard for people to understand why we choose to do the things we do and when it causes us hardship, then people question our motives even further. I am often asked if I'd rather see or be visually impaired and I just say I like the way I am. It can be frustrating at times, but then there are so many things that have come into my life since losing my sight and I am not sure it would have happened if I had seen fully.

    I also look back at the woman I used to be and wonder if that person would have had as many great friends and experiences if she were still here now...I've been told by friends that I was more of a snob lol!