Black or Red Ear "Friday"

The beginning of my week was really terrible. My youngest daughter was sick and I had to take her to the hospital because she was having problems breathing.  I had to sit in the emergency room for several hours early in the morning listening to a very loud breathing machine, alarms and intercoms.  I actually read an article this week that some hospitals can get up to 80-90 dBs, which is counterproductive for patients trying to heal.  I have problems with loud noises because of hearing recruitment.  You are welcome to read more about it on my main blog at http://www.myworldofsilence.blogspot.com/ -- just search for the keyword “hearing recruitment”.  My mastoid is still healing from a massive infection I had in June, and as a result my ears get irritated quickly - at least the left ear does.  On Wednesday, the day before Thanksgiving, I was still recovering from both work and the hospital visit, but at least I had the day off work and could wear my earplugs.  But I also had rush to get things organized for Thanksgiving to serve dinner for my family and my in-laws.  

 For the most of Thanksgiving I didn’t wear my hearing aids.  I didn’t wear them for a few reasons. We had music in the background and my kids and wife have high pitched voices, which sometimes bother my ears.  I had to rely mostly on lipreading, although wearing hearing aids has made me lazy.  We had a friend of the family over who is from a different country. He speaks English very well but his dialect made it difficult for me to follow the conversation.  I also  wanted to wear my earplugs because my oldest daughter decided we were going to do something new that night. . . .

YEP!  We were going to experience Black Friday.  We already did our Christmas shopping but wanted to be a spectator and see what other people do during the mad rush.  We chose to go to a mall rather than an individual store, in the hope of avoiding the worst of the insanity.  I have never seen so many people in one place at one time.  It is sort of like going to Disneyland and waiting in line for every ride for at least an hour.  I couldn’t even get any coffee.  We only went to two stores and then came home.  Elizabeth, my daughter, got a good deal on a Harry Potter shirt and I got a nice dress shirt at Macy’s.  The mall was really loud but it was a good thing my ears were in the BLACK for BLACK FRIDAY.

More Than Just Shoes

My 10 year old daughter, Abby, needed some shoes this weekend, and I thought I would give her the royal treatment. It turned out to be that I got the royal treatment.  We woke up around 11AM. Abby and I got dressed and went to the mall near our house.  My older daughter and wife were going to spend the day together, and we were going to meet up later for dinner.  I was going to have some fun with my little munchkin. 

Since her older sister wasn't with us, I let Abby have the front seat in the car and right off the bat she had to ask what this button was for and what that one does, like she had never been in my car before.  It was cool because we were able to talk about things she was interested in.  We got to the mall and went to Champs, an adult shoes store, to replace the the cheap shoes she has been wearing, which I can't stand.  She tried on some shoes, and I explained to her that these shoes would be more expensive, but they would be better on her feet, so she would need to take care of them. I told her, "We have to make sure when you buy shoes, you get good quality because think about how much time you spend on your feet - a lot".  We both had another place in mind to compare, so she turns to me and says, "Dad, before we decide on these shoes, let's go check on the other place to see if they are better and then decide."  Well, of course, the first choice was better so we went back.  Shoes purchased!  Next stop was to find a winter jacket.  I had a place in mind, so we got into the car and went on the freeway toward our destination.  On the way to a different mall we were talking about so many things, like about my childhood experiences, my cats when I was little, the cats we have now, bad dreams I use to have when I was little, and why Abby has bad dreams so often, etc.  Actually, we talked so much, I missed my exit two times.  We laughed.  We finally got to the mall but didn't have any luck in finding the jacket, but I did discover she liked Subway.  Abby is intelligent but slow to speak because of her learning disability from having Tuberous Sclerosis Complex.  She is quite aware of how people are feeling and amazing at making you feel comforted when not at peace.  But then she got really quiet and asked a question?

Abby asking in an innocent soft voice, "Dad, are you trying to bond with me?"

My mind just froze.  I didn't want to rush to an answer.  I knew what I wanted to say back.  In my mind, I was thinking to myself today was not about buying shoes, trying to find a jacket, riding in the front seat. It was about bonding with my daughter.

My response back to Abby was, "Abby, for the past several months I have missed not being able to bond with you because of my hearing loss.  I miss you.  I am so happy we can spend time together.  I love having time you."

At the end of the day, I think our relationship got a little bit closer since I have been so grumpy for the past several months being in pain from my hearing recruitment.

Who Is This Guy With Two Pillows Between His Ears?

My name is Jeff Swartz. I was born and raised in Los Angeles, California.  I have three younger brothers.  I would say my temperament is intuitive, giving, and choleric.  I struggled in middle and high school with learning disabilities.  I didn’t excel in school until I entered college.  I completed degrees in theology, business, and instructional design with high honors in each one.  I am the only one in my family who is deaf.

I began my professional life as a pastor for five years, from age 20 to 25.  My training in seminary focused on crisis counseling, marriage counseling, and counseling individuals suffering from depression.  I always believed I was more mature than my peers and more knowledgeable about how to handle difficult situations.  In my five years as pastor I learned a lot and helped many people.  Still, I was young and didn’t want to do ministry for a lifetime. I decided to follow my interests in education and helping people develop their cognitive skills. For the past ten years I have worked for Universities. I decided to complete an undergraduate degree in business and then a graduate degree in instructional design, an area I feel passionate about.  Instructional designers often use technology and multimedia as tools to enhance instruction.  Instructional designers help teachers create and analyze best practices to support student learning.

I now live in Atlanta, Georgia, with my wife and two incredibly beautiful girls (12 and 10).  I was brave in taking a big leap from the West Coast to Southern comfort.  I have to say it was a good move.  My wife was born and raised in Georgia so she was familiar with the culture.

One morning in April 2012, I woke up and my hearing was gone completely in my left ear and almost gone in my right ear. I had to rely on lipreading for two months at work and at home.   I thought it was just a cold, but after an emergency hospital visit in June I found out it is permanent.  I have had many sinus and ear infections over my 41 years that may have led to my hearing loss.  I spent countless hours on the Internet searching for reasons why I lost my hearing since the doctors couldn’t figure it out.  At one point the pain was so severe  I would pass out. The pain has not gone away, though I am better able to cope with it now.

The pain happens whether I wear my hearing aids or not.  I have to remove my hearing aids if noise gets too loud, even though my audiologist has carefully tweaked the settings.  I have seen several specialists looking for relief but to no avail. Not everyone with hearing loss has recruitment or hyperacusis, so little information is available, and  I am having to discover my own self-help techniques.  I find the the only remedy is to go to my room, close the door, turn off the lights, and  wait several hours in silence until the pain subsides to a bearable level. 

My website, “World of Silence” chronicles my experience with sudden hearing loss, pain, and recruitment.  “A person with recruitment will hear a relatively soft sound (loud enough for them to hear, of course), as “soft” but as the loudness level increases, then suddenly, just a few decibels above a level where the sound was comfortable, the sound is perceived as uncomfortably loud.”*. Sometimes it can cause the range of useable hearing to be very narrow and can complicate hearing aid fitting. Recruitment differs from hyperacusis in two ways: first, hearing loss is present with recruitment but not with hyperacusis, and second, generally only loud sounds are uncomfortable for persons with recruitment; persons with hyperacusis tend to experience soft or moderately-loud sounds as painfully loud, as well as truly loud sounds. If you do not have a sensorineural hearing loss, you cannot have recruitment. The way I explain it to people is it is like taking a mug (representing me) and water (loud sound) and each loud sound I hear, you pour a little bit of water into the mug until the water spill over, and I faint or scream.  The thing is, the water never dries up but always remains at that level for the day.  I try to monitor my sound level daily and have to visit my audiologist frequently to adjust my hearing aid settings.

Losing my hearing has given me a new perspective on life and has led me to build new relationships on Facebook, become a better writer, start a  blog “World of Silence”, and start to learn ASL. I have seen my family grow closer, and I have been able to share my experiences with friends and tell them about he necessity for ear protection and proper ear health.In just the past 8 months I have learned so much about the deaf culture and love the beauty each person has shared with me and helped me learn.  I believe I am at a point where I can give back and help others  find hope and healing and peace in silence.  The social web has given me a connection to both help and find help in the deaf culture.  Some of my favorite places such as DeafandHOH.com, Deaf-Insight.com, and SayWhatClub have let me share my stories and share in weekly online discussions.  Sometimes when I have felt bad about my ears I would jump online and read other people’s stories and leave comments, and that is how I have developed rewarding new connections in the deaf and hard of hearing world.  

I blog weekly every Tuesday at http://www.deaf-insight.com/world-of-silence.html as well as here.  Please come and visit as often as you would like.

 

Footnote

*This abnormal growth in loudness perception is a fairly common accompaniment to sensorineural hearing loss and is caused by the same inner ear sensory cell dysfunction (damaged or missing hair cells) that caused the hearing loss. It can be present in varying degrees in people with sensorineural loss. It does not always present a problem but in some cases it can be just as bothersome as hyperacusis.” (Acenta, 2003)

Reference

Acenta (2003).  Sensitivity to Loud Sounds. Retrieved October 24, 2012 from , Arkansas Center For Ear Nose Throat And Allergy Website: http://www.acenta.com/audiology.soundsensitivity.asp