My Esteem Story: Covered by the Oprah Winfrey Network (OWN)

As many of you know, the Oprah Winfrey Network (OWN) did a story on me over a year ago for a show called Lost and Found. My story is about how I lost my hearing and was able to find it again after having been implanted with the Esteem. They interviewed my parents, Fraser, and I and also filmed my Esteem activation when I heard for the first time in years without hearing aids! 

After waiting patiently for over a year, I was notified that my episode would be airing on Saturday, March 16th at 7:00 PM EST (see the attached picture for a little sneak peak - I am pictured in the lower left hand corner).  The show runs 60 minutes and there are 3 segments. Mine will be the middle segment of the episode called "Life Changers".  The time is subject to change (it has already in the last 2 days) so you may want to check the schedule on the OWN website (http://www.oprah.com/own) on Saturday morning just to be sure. 

Hope you are able to tune in! :)

Sounds of the Mall

Today at work I had to attend another Webinar training. I had such high hopes that attending meetings at work would be easier for me, but the last training I attended left me feeling hopeless. I am happy to report that the quality of the sound ended up being much clearer than the first time which made the training much easier to follow. However, I was probably only understanding about 50% of what was being said. Learning to hear again is not a simple task. It is frustrating and overwhelming. It takes A LOT of patience. Patience that I am losing every time a situation is this difficult for me.

One of the most important things that Fraser has taught me is to speak up and be my own advocate about my hearing loss. However, sometimes I wish that I didn't have anything to speak up about. I wish I could have a normal life and be a normal employee. I hate, more than anything, that accommodations have to be made for me. Oh, everyone has to move so Alex can sit at the front of the room. People also have to communicate with me in different ways in order for me to hear.

As I left work, I felt so many negative emotions so decided to stop at the Mall on my way home. "Retail Therapy" is the cure to everything. I also knew I just needed to walk around and let go of the negative feelings that were surrounding me.

When I walked into the mall, my heart started to race because I was hearing SO many noises and all at once. 

• The sound of heels tapping across the floor
• The sound of people talking in the distance
• Music exploding from the ceiling
• Kids screaming as they sprinted past me to get to the play area

I honest to God felt like my head was going to explode. As I was walking, I kept cringing and looking over my shoulder to see what was going on around me. I felt a little paranoid. I do not think I passed more than 1 or 2 shops before I made a mad dash into Forever 21 to escape the madness. But this was much much worse! The music in this store was so loud and overbearing. The beat of the music soon matched the beat of my heart rapidly thudding underneath my shirt. As I got deeper and deeper into the store, my anxiety worsened. I couldn’t take it. I had to get the heck out of there. I honestly cannot remember what happened next but next thing I know I have my hands over my ears and I am running out of the store, out of the mall, into the garage, and into the safety of my car. Wow. That was the most overwhelming 7 minutes of my life. I think that this has to be some type of world record for the least amount of time spent in a mall.

While this week has been a bit discouraging for me in my ability to hear and understand people, as well as in my attempts to be “happily social”, I now understand why the Envoy Technician sets the devise at minimal gain for the first couple of months and only allows you to hear and get used a small range of sound. While my experience at the mall was overwhelming, it did give me more confidence in Envoy’s process. I feel like I have the strength to be patient and that everything will fall into place soon enough. If it doesn't then it is not the end. In very small increments, my life changes everyday and I have faith that things will get easier for me.

First Day with my Envoy Esteem Implant Activated

Today, my Envoy Esteem implant was activated and it was probably the most emotional day of my entire life. I didn’t know it was possible to experience so many emotions in just one day. I want to capture all of my pure emotions so that I never forget how incredible today was. Wow. I do not even know where to start, so I will just start here.

I have a remote to turn my device on and off and it has to be placed directly over the device, which is right behind my ear (you can feel it if you touch it).  The Envoy Technician said that sometime it takes a couple of tries to get it to turn on, but I got it on my first try. When it was turned on, the first thing that I heard was my own voice and it was super loud. I never really knew what my voice sounded like until today. I sound a lot more nasally than I ever realized. I couldn’t believe how loud everything was. The sound I heard was a lot more natural than I expected it to be but still very different than what I am used to hearing through my hearing aid. Everything sounded so loud that it almost sounded a bit echoy, like I was in a tunnel or something where every single sound in the room was bouncing back and forth. I started to cry because I haven’t heard anything this loud and clear in a LONG time. I started to hyperventilate a little bit and could barely catch my breath! That’s when I heard myself breath for the first time. Wow. I didn’t realize how loud this sounds. Just the thought of how amazing this moment is made me laugh, which was REALLY overwhelmingly loud. This made me cringe a bit! Then I started to talk again and realized again how nasally I sounded. I decided I needed a tissue to blow my nose. Again… WOW that’s loud! Was all of this really happening to me? I couldn't believe it!

When I finally came back to reality, I realized I heard crying and sniffling but this time it wasn’t me… I looked over at Fras, Mom, and Dad and they were crying and sniffling.  I not only was hearing myself, I was hearing them too without even having to look at them! I got up and hugged and kissed Fraser. KISSING IS SO LOUD AND GROSS AND WEIRD. Still having a little bit of trouble with this... Once I sat back down, I took a sip of water and I heard the water swishing around in the bottle, I heard the bottle crinkle as I was holding it, I heard myself swallow. Gosh, I am a loud drinker. I wonder if all of these things I was hearing bother other people and are loud to them too. Fraser started asking me what I could hear, and I was able to answer him without even looking at him. This was all so overwhelming for me and my brain started to freak out.

So, the first part of my appointment was having the device turned on. After this, they have to run some test on the device to make sure that everything is working properly. While they were doing this and adjusting the settings, I started to hear a "wooshing" noise in the room. I started to panic because I thought this was feedback from the device. After testing this, we soon realized that what I was hearing was actually the heat blowing! I had actually heard this and noticed when it turned on! I can't remember the last time I took notice of this! As part of the testing and reprogramming, they have to turn off the device and then reprogram it to "minimal gain" because, well, everything is just so overwhelmingly loud at first. When they turned it to "minimal gain", things started to sound a bit hallow and distorted so they had to reprogram it a couple of times to make this go away. The best way I can explain my sound distortion is that whenever a sound is "too loud" for my device, it sounds like what you would hear if you were talking on speaker phone and it was too loud. So the Envoy Technician basically had to turn down the volume as well as eliminate certain tones and ranges of sound so that I am not getting this type of distortion. Once my brain adjusts to the device, I will be able to hear at these levels without this distortion.

During the reprogramming, I found that voices and noises were not as loud as they were at first and I was having a difficult time hearing conversations going on across the room. This made me very upset and I started crying again. I went into this process thinking that my life would change drastically after the device was activated, and while I am still hearing so many new sounds, why was I still having this much trouble understanding and comprehending what people were saying? During the activation appointment you go from hearing all of these new noises so loud and clear when they first turn it on, to being reprogramed to "minimal gain" where you are back to wishing your hearing were better. 

All of the cameras were on me and I was starting to feel overwhelmed. [On a side note, I should mention that the Oprah Network filmed my activation and did a segment on me for a show called "Found" premiering in February 2012. Essentially, it is about me "finding" my hearing again.] I wanted to ask questions and express my concerns to the Envoy Technician but since it was being filmed, the producer was also butting in and trying to get the "shot" that she needed (e.g., close up of me holding up the device to my ear). I took one look at Fraser and he already knew what I was thinking so he politely asked the producer and film crew to leave so that I could focus on talking to the Envoy Technician  oppose to helping the producer “get the shot” that she needed. I felt absolutely awful about this, but I just couldn't handle the pressure anymore!

Once everyone started to clear out of the room, I felt like I was a volcano about to erupt so I asked mom to go to the bathroom with me. Before I even made it to the bathroom, I began to cry hysterically. My mom just held me, comforted me, and wiped my tears until I calmed down. I went to the bathroom and heard myself pee. As gross as this is, the sound was just so loud and different than I remember that I actually flinched and stopped peeing for a second. When I flushed the toilet, it scared the heck out of me! No wonder I was scared of the toilet flushing at nighttime when I was a child! Hearing these new sounds so loud and clear in the bathroom lifted my spirits and gave the emotional energy to get through the rest of the appointment.

I was able to finish my appointment without the distraction of the producer and film crew. The Envoy Technician made some more program adjustments and everything started to sound a bit more natural but I was still having a difficult time understanding people at a distance from me. The Envoy Technician assured me that what I experienced today is completely normal (emotional breakdown and all!) and that it will take some time for my brain to adjust to the Esteem and learn how to hear again. This is a gradual process that takes time; it will take about 6 months and multiple re-adjustments until my hearing is optimal. 

Before I left, I learned how to use the remote control (see picture below). 

There are 3 different programs: a, b, and c. Each program has 5 volume settings. While there is some overlap across the programs, each volume setting is a 3 decibel increase. I was told that 3-5 decibels is the average sound the human brain can “take” in one day without producing feedback and completely overwhelming me. They started me at A3 and told me to adjust the device every 3-5 days, which I will do until I reach C5. During my re-adjustment appointment, they will re-program my device and remote for different settings (i.e., quiet settings, loud settings, etc.) based on my experience over the next two months. Part of the reason they start everyone at "minimal gain" is so our brain can learn to "hear" again. It is important for me to get used to hearing the sounds directly around me, such as my voice, chewing, swallowing, etc., before they open up new ranges and tones.  

After my appointment ended, I spoke with the producer to see if I could reschedule my post-interview with them once I was able to emotionally compose myself and get through the emotions of today. Everyone was (surprisingly) very understanding and so grateful that I shared this special moment with them. They told me that what I did today was very brave and will touch and change the lives of many people living with hearing loss. Thinking about this right now, I honestly cannot believe that I had the courage to share my story and let complete strangers film such an emotional and personal moment in my life. I have always been very secretive and private about my hearing loss (some people don't even know that I am hearing impaired!) and I will be sharing this with the whole freaking world!!

I left the appointment in a very overwhelmed and emotional state, especially since I felt so terrible about not finishing my day with the film crew. My appointment was held in a very large and confusing building in downtown Denver with multiple parking garages so it took us about an hour to find our parking place. Once we got to the car, I went to grab my phone and couldn't find it! After endless searching, we found it in a puddle of water under the car (go figure!). We started driving and my navigator was sending us to dead ends and AHHH I just wanted to get the heck home at this point!!  My appointment ended at 3:30 and we did not arrive home until almost 6:00 pm! DINNER TIME! Fras and I picked up some burger from one of my favorite places on the way home. While I was waiting in the car for Fras to run in and get the food, I called mom. It was weird, because when she started talking I actually had to turn down the volume so I could hear her. With my hearing aids, I would keep pressing the volume up button throughout the entire conversation even when it was on the highest volume! I was always trying to find a way to make it louder! I did still have some trouble understanding her but it was much better than I ever did with my normal ear or hearing aids.

I was so nervous before my activation appointment that I couldn't eat so when we finally got home I was starving! This is when I heard myself chew for the first time in as long as I can remember. As I was chewing, all I could think about was how weird and gross this noise was. I felt self-consious and kept looking around to Fraser and my parents to see if they could hear the smacking of my lips. When I took a bite of a crunchy french fry, all other noises around me became invisible and my ears flooded with crunching. Fraser was talking to me and I had NO idea what he was saying. He assured me that when he is eating something crunchy the same thing happens to him.

While hanging out after dinner, I heard stomping. It was Rufus coming up the stairs of the basement! When he approached the living room, I could hear the tags of his collar clinking together and his tail "tap, tap, tap" against the coffee table in excitement! Dad, of course, was making a cocktail and dumping the ice into his glass and I heard him loud and clear across the HOUSE!! Everywhere I walked in my house I heard the creaking of the hard wood floors. 

Before bed I decided to clean up and take a shower. I have severe to profound hearing loss, so without my hearing aids, cannot hear much of anything in the shower. With my esteem, I heard EVERYTHING... the "pitter-patter" of the water hitting the tub, the sound of water filling and emptying in my ear, the "whack" of soapy water hitting the shower door as I lather my body in soap. I cupped my hands together and heard the water splashing into my hands. I heard some squeaky noise as I rubbed the water on my face and lathered my hair with conditioner. Then all of a sudden I heard someone talking. I couldn't understand what was being said so I called out, "Fraser? Are you talking to me?" A few seconds later he popped his head in. "Could you hear me talking in the bedroom?” I replied, “Yes, were you talking to me?". He said, "No, I was talking to my mom on the phone. I can't believe you actually just heard that!". Please note that we had this conversation while I was rinsing my hair (not reading lips). I heard him and actually understood him. I also was able to hear Fraser whistling and running around the house with Rufus. I never EVER would have been able to hear ANY of this before my my implant! SO COOL! [Totally off topic, but I just sighed as I am writing this and I heard myself breath. What a wonderful sound.]. I spent a good hour in the shower just soaking up all of the new noises I was experiencing. I think water trickling is one of the most beautiful and peaceful noises in the entire world. I never wanted this moment to end.

What I am hearing at home tonight is completely different than what I heard at my activation appointment earlier today. Every second is different and a learning experience for my brain. My hearing aid and Esteem also sound different and are picking up on different types of noises. Right now my hearing aided ear (right) is picking up on more distant noises than my Esteem is set to hear. My Esteem ear is picking up on what is going on directly around me (my voice, my breathing, my swallowing, etc.).

I went into this experience expecting that my hearing would be back to "normal" today and I was, at first, very disappointed to realize that it is going to take time to be able to hear again. However, experiencing all of these new noises has been absolutely amazing and has already changed my outlook on life in so many ways! I have all the confidence in the world that this is my miracle and that this is the beginning of my new life.