1. Please tell me a little about your background with hearing loss. Were you born deaf or lose your hearing?
I was born in Kuwait in 1976 and moved to the USA when I was very young. While in kindergarten I was diagnosed as having “bilateral sensorineural hearing loss”. At first, my hearing loss ranged from mild to moderate. But later on I steadily lost more until I suddenly went severe – profound in 2005 – eventually going completely profound late 2010.
2. Did you wear hearing aids growing up?
I still have my very first hearing aids! They were made by Danavox and are quite bulky! I started wearing hearing aids since 1st grade or so. I also had a wireless FM setup with my kindergarten teacher so I could hear her better. At one point in my life I went without hearing aids for several years due to the fact they simply weren’t easily available in Kuwait and were too expensive to purchase.
3. What kind of services did you have as a child for hearing loss?Did you attend a public school or a special school?
I attended a public school and the only special treatment I had was using whatever technology was available back then. I’ve always attended public schools throughout my life in the US: Millbrook Elementary in Raleigh, NC. Uni Hill Elementary in Boulder, CO. Shambaugh Elementary in Ft. Wayne, IN.
When we flew back home, I attended private American schools until graduation. So honestly, I can say that I never received any special treatment due to my hearing loss. I was considered ‘normal’ by everyone.
Although, according to my family I have taken a few speech therapy classes during my 1st grade year. (I really don’t remember much except those big headphones and tape recorders!)
4. Did you ever learn sign language?
I never did, but I do know a few words and letters in ASL, BSL and KSL (Kuwaiti Sign Language).
5. What made you decide to get a cochlear implant as a man?
It took me a long time to convince myself to go for it. I had to be prepared for it mentally and emotionally. A lot of “what if’s” went on and on in my head. After meeting and seeing for myself other people with cochlear implants, I decided to go for it. They’re simply doing way too well for deaf people!
6. Can you please walk us through your last year's journey? Was it as expected?
At first, I was disoriented. I kept asking, “What’s that sound?”. I roamed around the country a lot simply sitting in cafes and listening to everything around me trying to figure out what I heard. People I knew my entire life sounded different to me and it took me awhile to get used to it! I still have trouble identifying sounds but according to many, I’ve leaped beyond their expectations.
I can hold multi-way conversations easily now. In loud environments such as a party, I can easily hear and respond to people around me.
What tickles me is that because I hear myself as very loud, I started to speak in a low voice to the point where others can’t hear me! I sometimes jokingly ask, “Do you want my CI so you can hear me better?”
I didn’t have any expectations at all, but I can tell you that it sure is a whole lot more than anyone expected!
7. What was it like the first time you were mapped and turned on?Did you recognize speech sounds(if you had hearing before). Was it scary and loud?
I have a video on YouTube and wrote a blog post about how I felt. No matter what I say or show on my face – nothing will ever compare to how I really felt. I simply cannot find the right words to describe it. Yes, I was scared. Yes, I did cry a little (I admit that!). I was overwhelmed when I heard my doctor’s voice. I was in denial - I CAN hear and recognize these sounds!
In the beginning, everything was loud to me but not scary…more like fascinating. Here’s a secret: I spent the better part of an hour rubbing my hands and listening to the sound of skin on skin. Funny, huh?
8. What kind of therapy have you had to help with your listening and speaking skills?
None whatsoever. Movies, TV, phone calls, conversations with friends and family. All that helps a lot more than having someone with a funny accent trying to teach me how to listen and speak. Especially since I’m bilingual and we tend to speak with a pidgin mix of English – Arabic which may be nearly impossible for anyone not used to it to follow!
9. What made you start to tweet about hearing loss?
I noticed that nobody is really aware of deaf and hearing loss in Kuwait. Several times I’ve been frustrated by the lack of respect and/or services for us. Also education for the deaf is in such a sad state, that the deaf in Kuwait are unable to go further and go to university! In short, we have nothing here that makes life for us easier. The only answer I got was, “Go learn sign language, you can’t live without it.”
So I decided to use what I do best – write about issues locally using the social media and being a long-time blogger; blog about it. I also attend conferences, joined up with a non-profit organization whose main mission is to fight for disability rights in Kuwait.
Twitter is one of many mediums I use for my fight to gain deaf rights. And it sure is quite effective!
10. What is your job ? Has your hearing loss gotten in the way at all?
I currently am a training and development coordinator for a company contracted to the Council of Ministers in Kuwait. At first yes, I couldn’t handle trainees and couldn’t attend meetings. They were patient with me until after the surgery. My transformation impressed my team so much that they asked me to lead and start on a project to transform the company into a ‘deaf & disabled friendly’ environment. In turn, I’ve been asked to give a talk on best practices in employing the disabled in general.
So you can say that my hearing loss has definitely attracted the attention of my employers and others.
Please share anything else you would like to about your journey with hearing loss. I appreciate connecting with you and sharing information about hearing loss with you.
My journey has been bittersweet as with any journey in life tends to be. There are days when I have my ups – enjoying music, participating in conversations with friends. While there are days where I have my downs – I couldn’t understand someone on the phone, people mumble and aren’t clear when speaking to me even when I ask them to speak clearly.
Excuse such a crude term, but I’ve ‘trashed’ many people who simply do not accept the fact that I am really deaf and I have a hard time understanding them.
As I said in a speech I gave at a conference last December, “Folks, my hearing may be great, but that doesn’t necessarily mean I understand everything you say.”
To hear again is comparable to hiking up a hill that steadily goes steeper as I come closer to the top. I’m loving the challenge. :)