My Thank You's

 

Saying the words, “Thank You,” is probably the best gift you can give to someone - sometimes even better than the gift itself.  I believe there is something magical in those two words.  But, of course, you have to have good intentions when saying it and not because your parents or someone else told you to say it.  In ending 2012, I was thinking about adding previous blog links from World of Silence where I would talk about how far I have come from being suddenly deaf to learning how to be at peace with deafness.  In this blog, I am going to recognize individuals in my life I want to say, “Thank You,” to. There are so many out there who have helped me accept my deafness, but these people really made a difference.






Monica Hood - Owner of Deaf-Insight.  Monica saw my blog on World of Silence, and I think I also found her website through searching information about deaf culture when I became deaf.  I submitted one of my stories to see if she would post it on her Deaf-Insight, not thinking she would, but she did.  Actually, she approached me and asked if I wanted to be a weekly blogger on her website.  When Monica invited me to write I didn’t believe her at first being new to the deaf world.  I still today have to take a step back and say, “Boy, I am such a novice at this deaf thing.  The other bloggers have been deaf forever compared to me.  How can I compete?”  Monica, keeps reassuring me I hold my own. Monica, “THANK YOU.”




Cynthia Dixon - owner of 4 Ears, 4 Eyes.  Cynthia makes me laugh.  She is the one person I feel very comfortable going to and asking questions about deafness.  I met her on Facebook when I became deaf.  Cynthia, I love your writing. You are amazing.  THANK YOU for being there for me when I needed someone to listen.




Judy Swartz (a.k.a “Mom”) - Sorry she doesn’t have a blog nor a website.  Oh well!  Parents never wish their kids to have to have any illnesses or disabilities, but my mom’s son did - deafness.  She was stressed out 3000 miles away in Arizona when I ended up in the hospital for 10 days.  I couldn’t talk to her on the phone for a long time because of my hearing recruitment or the cool technology I have today like my CaptionCall phone or ReSound Alera 962TSG hearing aids.  The only way she could speak with me was through my wife and even that was difficult because the sound of the cellphone was loud.  But, when I started my blog, my mom read my post and sought to understand. She understood that hearing aids were not going to create the perfect picture but just an aid.  Mom, THANK YOU for being there from the beginning of my hearing loss adventure.






Karen Swartz (a.k.a. Wife) - Should I have mentioned my wife first or saved the best for last?  August 28, 1999, we said to each other, “I do,” regardless of what happens.  But nobody anticipates waking up one morning to find your husband can’t hear your voice.  I know there are many out there that lose their hearing suddenly like me and some who lose it progressively.  If I had a choice I would not chose it to occur suddenly,so it would allow Karen time to adjust to my hearing loss until it was completely gone.  We have been married for 13 years and have been through too much over this period of time and to add a deaf husband.  Karen has been so brave, taken care of me and the kids while I couldn’t since I was in the hospital, and being sensitive when I needed quiet time.  Karen, with all my heart and soul, and not just because you are my wife - THANK YOU!
 

Lizzie's Story About Dad's Hearing Loss

My daughter, Elizabeth at a very young age started writing some amazing stories.  Elizabeth has seen her family go through a lot of health issues and has used these moments of crisis in writing about them.  Her teachers since 4th grade have commented about how amazing her writing is.  She is not only a great writer, but she is also beautiful, smart, witty, and hilarious.
Elizabeth recently had to write a story about an obstacle someone in her family had to face and how they overcame it, called a wall.  She doesn't have a Facebook page so please leave comments here so I can read them.  Here is her short wall story of me:
 
Dad's Wall
Imagine awaking one morning to discover that you cannot hear anything. This occurred to my father this past April. In June, he had to go to the hospital because he had a really awful ear infection. Fortunately, my dad’s ear infection cleared up, but he was left with permanent hearing loss. This was a very stressful time for all of us because it was difficult to communicate with him. Before he was able to obtain hearing aids, he depended on reading people’s lips. Our family even learned a little ASL, American Sign Language, to make it easier for him. The hearing aids he did purchase are highly sophisticated and can be adjusted for various environments. They have assisted him a lot, but he can’t wear them all the time because of ear pain. Even though this wall may perhaps never be completely overcome, some positive things have come out of this troublesome situation. New connections have been formed. Our family has come closer together, and my dad is writing a blog about his daily struggles with being deaf. He has in addition made many friends in the deaf community and has been coping better with losing his hearing.

I'm A Dreamer!

As December begins, the year draws to a close .  During this time I tend to think about what has happened and what I want to happen in the coming year.  I know there are some people who sit down each year and write out their goals and aspirations while others just go with the flow.  I am a planner.  My wife is a non-planner.  God put us together for a reason -   to learn when to plan and when to let things be.  I have learned from her that sometimes it’s okay to not plan.  But in this blog I want to share with you my future plans - or should I say dreams.

My dream is to be a highly recognized blogger.  I want to share with the world the story of how I lost my hearing and the struggle I went through coming to terms with it.  I know ReSound and some other deaf community websites (Deaf-Insight.com, SayWhatClub, DeafandHOH, etc) have recognized me and I am thankful for them, but I want to reach out to the hearing world and share my stories.  I have too many hearing friends and family who need to hear my story, because it could make a difference in someones life down the road, especially with the rise in hearing loss around the world.

So, I have a question for everyone.  Please go back and read some of my posts, critique my writing, and give me some ideas for what I should do next year to become a better writer and a better known blogger.

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

Sleeping on The Couch Tonight

This will more than likely be me tonight once my wife reads the blog I wrote over on this website.

You can read the blog here:  http://www.deaf-insight.com/15/post/2012/10/my-wife-is-going-to-kill-me.html

T-Minus 7 Days

In 7 Days, I return back to work.  I work at a University, and my responsibility is students' academic history all the way until they graduate from school.  If the student has issues with professors, study concerns, family problems, or anything else, they come to me for assistance.  I am their main point of contact, and the person to give them hope to finish their education.
 
I am looking forward to returning; I have been out since June 2012.  My ears are healing still,  but I feel it is time to go back to work.  If you are not familiar with my story, I woke up one morning with no hearing at all and thought I was sick with ear infection, which turned out to be permanent hearing loss.  Well, at least this is what the doctors think the reasoning is to be for the sudden hearing loss.

So, what am I doing this week?  This week is last minute doctor appointments.  I am going to see my audiologist to get another hearing aid adjustment now that I have my earmolds.  I am also going to see my ENT, and my headache doctor.  I have a busy week but no worries. I have a special treat in store for Jeff on Friday.  See picture below:

 

Deaf Buddy

My buddy "4Ears,4Eyes" is one cool girl.  She actually got up the courage to post my story when I created a "ASL T-Shirt".  She also included a special picture but I don't want to say too much.

 Just click on the icon and leave a comment on her page. 

Add caption

Talking About Street Art

"Switched at Birth" a show that comes on Monday nights. Sixteen years ago, one mistake changed two families forever when two newborns were switched at birth. Bay grew up in a wealthy family while Daphne, who lost her hearing as a child, was raised by a single mom in a working class neighborhood. 

My wonderful wife had a great idea we should talk about Bay and Bay's dad relationship in the last episode during our Sunday home conversation meeting which we call Grace Happens. 

Some of the questions we asked:

1.  Is street art wrong? Why do people do street art? Do you think it's creative expression or vandalism?

2. Why does Bay tell her parents that Zara is who she would be if she hadn't been switched?

3.  What do you think will happen to Bay in the end?

4.  The "my way or highway" response Bay's Dad gave Bay in the episode I attached seems pretty harsh.  Is another way Mr. Kennish could have handled the situation?  Why didn't Bay's mom speak up during the conversation?  Is there another way to handle Bay since they have already tried playing to her good nature?

5.  If your child had a friend you didn't like, how would you handle it?

My wife and I feel that when you watch a show like "Switched at Birth" a family should reflect on its quality and important of what the director is trying to share.  It also makes for good conversation piece with friends. When we get together with our kids with topic or shows like this we really don't have an agenda or parents take ownership.  We believe kids sometimes have better ways of saying things than adults.  It was a good discussion.  I highly recommend the show and you can watch season one on Netflix and Hulu.

Mentoring Deaf Newbies

I was thinking today there are a lot of deaf resources and information you can find in the internet.  You can search things like how to learn ASL to medical information and assisted technology for the deaf and hard of hearing. 

Do you know other than Facebook groups (most of the people being outside of your location) and some organizations that meet once maybe once a month (and maybe not on a "newbie" level) or so there are not many mentoring programs.  What I mean by mentoring is having one person assigned to a newbie for 6 months making sure they are encouraged, supported, giving good quality information about deaf products and culture, and working through healing process.  It would have to be someone who has been through the experience themselves.  Here are some of the things the mentor would share:

• Captioning - Captioning on phone, TV, computer, etc
• Facebook Groups to join
• Daily Thought Journal - help them express their feelings
• Referrals - to doctors or audiologist (if need be)
• Teach Sign Language

I believe we need to start something.  I remember when I woke up one morning and my hearing was completely gone and I was scared.  I thought it was a cold but to find out it was more than that.  I received help from a few good people during my time of sadness and now educated to assist others in need.  

Social Web

Spiders I can live without but spider webs I can look at all day long.  Spiders are such wonderful artists, the way they spin such impressive designs.  It takes about one hour for a spider to construct an elaborate web of silk thread, called an orb web. An orb web consists of a series of roughly circular, concentric outlines, with spokes extending from a hub. Orb webs, which are most noticeable in the morning dew, are constructed by many species of spiders.

About ten years ago I started spinning my web - the social web.  I started with stories about my daughters being born, my religious experiences, how I met my wife,  and stories about the personal struggles we all face.  Social media like Facebook, Blogger, Twitter, and other platforms gives us a way to be connected in a web as intricate  as any spider web.

We really are creatures of habit and we like being around one type of people until something forces us to move further out.  In April 2012,  I lost my hearing.  My social web changed that day from a network of people who were only in the hearing world to those in the deaf and hard of hearing world.  I believe the social web is about being part of a design, like a spider web, and seeing what a truly unique pattern we create together.  

Mucusland

For the past few days I have been in Mucusland. No, I did not mean to say Disneyland.  The rides are really sticky and really expensive given you can't use your flex spending account to buy Tylenol or Mucinex D to kill thick monster rolling around in my head.  And worse of all I can't wear my hearing aids because my ears are so irriated, red, itchy, and probably infected.  I am deaf without them.  I know this will pass but right now I am not thinking about how tomorrow is going to feel.

Okay I so do not like this guy.  "Mucus is incredibly important for our bodies," explains Michael M. Johns, III, MD, director of the Emory Voice Center and assistant professor of otolaryngology -- head and neck surgery at Emory University. "It is the oil in the engine. Without mucus, the engine seizes." (http://www.webmd.com/allergies/features/the-truth-about-mucus) Do you agree with what he says?  Trust me I can live without the ugly green dude above.

Oh, by the way, be very careful where you walk because I accidentally lost my ear tubes prematurely.  Yeah, I have a call into the ENT to see if he want to put new ones back in.  Yeah, there is always exciting at my house.

The good new is I am almost done with the Vampire Diaries and it is probably one is the best vampire series out there I have ever watched. 

How Did You Come Up With That Title?

Some people have asked me what “World of Silence” means.

We live in a world of noise.  There are several cities around the world that never slow down, like New York, Miami, Los Angeles, and Atlanta.  When you go on a cruise ship you can dance the night away and never be without noise.   You would think churches would value silence but not so.  There are some noisy churches out there that play music before, during, and after service, sometimes really loud Christian rock.  In movie theaters, you not only have the movie running but also people texting, chatting, unwrapping and munching food, and kids bouncing around in their seats.  Where can you go to have silence?  

Numerous studies have linked unwanted sound to increased levels of stress. Even low-level noise has been associated with increased aggression and other mental health problems, as well as poor sleep, high blood pressure, and heart disease.

“World of Silence” is about me suddenly going deaf several months ago.  I wasn’t a loud person when I was able to hear but I sure wasn’t a quiet person either.  “World of Silence” is about helping others appreciate a moment of silence, whether you can hear or not.  You don’t need to be deaf to learn silence so I challenge you to spend 5-10 minutes a day with no noise or sound.  I know it is going to be difficult but 5-10 minutes is not too long and you might just see how much you learn about yourself.

SHHH!  Quiet.  I am practicing silence now.  Are you?

48 Hours

My brother Jason came in from out of state to visit me and the family.  I love to be silly but especially when he comes out I get weird and have lots of fun.  Here we are walking through the mall stopping at Claire's.

My brother is so much fun to be with.  He has read all my blogs and Facebook messages.  It really meant a lot to me for him to come down from New York to Atlanta this weekend to visit.

I knew before he came I had to get a good hearing aid adjustment because he was going to take me places and test these puppies out.  So this is what we did:

DAY 1 - Atlanta Zoo - animals, screaming kids, more animals, loud.  Then we went out to noisy pizza place were pizza plates were dropped on the floor and TV's were pretty loud, and kids screaming.  RESULTS:  EARS NOT TOO BAD.  EARS SURVIVED

DAY 2 - COSTUME SHOPPING - Went to the Mall (see picture above).  We were there for awhile.  Really loud in mall.  Went to eat Chinese food somewhere else more quitE but still loud with TV's going on with stupid football playing (sorry I hate football).  Night time, I am doing okay and we decide to go to AMC movie.  We all buy tickets.  I was a little bit nervous about going to see a movie, especially since AMC's do not offer any captioning.  I go in and the previews come on and I jump out of my seat and say, "HELL NO".  My ears are just not ready for movies yet.  Maybe if I didn't go to the mall the movie would be tolerable.  I wonder how many decibel a movie is?

Brother Jason, thank you for visiting and cheering me up.  My family loves you and we look forward to see you again soon.

SLOW DOWN THERE HORSE

You see me in this picture.

Yeah, that's me, the dark one trying to find a way to run away.  The other horse is you - my wonderful Facebook friends, my wife, and Audiologist saying, "Jeff, slow down, go slow with those hearing aids.  For heaven sakes you just got them.  Give yourself time to get use to them." 

I am so stubborn and want to quickly get to point B and move passed this ear pain or even the sounds I haven't heard in a long time with my hearing aids on.   I think I finally learned I need to take a break and rest my ears for a few hours a day, especially before my wife and kids get home.  I am pushing myself too much and need to rest.

My plan is before my kids come home is to put my earplugs in for two hours so when they are home my ears will be refreshed.  Maybe in a month or so my tolerance level will be better with high pitched noises.

Massage Helped A LITTLE

I didn't do much today other than visit the ENT for post-operative surgery.  I was home and all of sudden my ears started hurting me.  It is not easy at all getting people to believe the pain in my ear is really severe.  Most of the time it ends up being a horrible migraine, which doesn't go away until the next day. 

I found a really informative website to help novices understand hearing test.  If you   Please click on Demystifying Hearing Test and if you scroll down to #7 you will see what my audiologist and I struggle with when programming my hearing aids.

Today I decided to do something a little bit different.  Instead of going upstairs and crying until the next morning I tried a 30 minute deep tissue massage.  I got some relief.  I am not 100 percent out of pain lane but got some relief.

Has anyone ever tried acupuncture before?  What is it like?

A Parent’s Favorite Word

This is the ASL sign for NO!




Everyone knows the first word out of a baby’s is usually “Mama” or, if you have a smart child, “Dada.”  My  children said “Mama” first.  Now can you guess what a parent’s favorite word is?  Right, we use “no” a lot when it comes to our children because we want to keep them safe and teach them boundaries. “No” is also a toddler’s favorite word, because they are learning that they can impose boundaries, and they are really excited by this new-found power. My blog today is about rediscovering boundaries and the power of “no” for ourselves.

What do I mean by “boundaries”?  How do we determine if our boundaries are healthy?  Think of yourself as a farm with a fence around your property.  Boundaries determine what you allow past your fence and what you bar.  Boundaries keep the wolves out and the livestock safe.  But sometimes we forget to say “no” and things go crazy. The wolves get in and the cattle scatter. We waste a lot of time and energy putting things back in order.  Each of us has our own boundaries and it’s up to us to make sure we keep our fence maintained. One way to tell if you have healthy boundaries is see how many times you say “no.” I make it a daily activity to remind myself that I have limitations.  Here are some of my recent “no’s”:

1. No, I will not go to places that are noisy, because it hurts my ears. If I go I will use ear protection.
2. No, I will not drink coffee because it keeps me up late at night and it makes my tinnitus worse.
3. No, I will not buy into the cult of “busy.” I will always make time to be still and reflect - enjoy the World of Silence.
4. No, I am not disabled because I am deaf or hard of hearing.  I just “hear “with other senses (taste, sight, touch).
5. No, I won’t go it alone. When I am stuck in a situation where I need help I will ask for it.

These are just a few examples.  What would you add to this boundary list for yourself?

I highly recommend a book called Boundaries, by Henry Cloud.

Full Day with Hearing Aids with Family

Sound overload - that is how I feel.  I know I just got my hearing aids (HA) and I am really happy to hear sounds and words.  I had really bad hearing in both ears and my speech discrimination is poor.  I was severely deaf in both ears and now with my HA's I am about mildly deaf in both ears, which is amazing. 

I am trying to get a good idea of what I can handle with my hearing aids and what limitations I have with each hearing aids.  The premium HA's I have can be programmed various ways depending on the environment I am in.  The hearing aids will immediately adjust to different environments and cut down on uncomfortable sound levels that might hurt my ears.  The problem is my hearing level and my uncomfortable sound level are very close so I don't have much room to play with.

Let see I went to bank today (that was really loud), Starbucks (hate when they use their blenders), lunch at Chi k-fila with family, then finally the Mall of GA.  If you remember a month or so ago I posted a blog about my bad experience at the Mall - http://myworldofsilence.blogspot.com/2012/07/not-cool-anymore.html I think I should still stay away from the mall on the weekends.  I am surprised I am the only one having sensitivity issues with these noises and it does even bother people with normal hearing.  Maybe people just don't care until they lose their hearing. 

I am know upstairs in my room in silence so I can rest my ears and my head.  I actually took off my HA's so there would be silence.  WOW!  What a difference having them on one moment and then off.  I didn't even realize how deaf I am.

Technology is amazing but I sure how this technology will work for me.

Sound with ReSound

Meet "Bionic Jeff"











Actually with all my gadgets in my body I feel more like this:

Everyone loves C3PO from "Star Wars"












I spent almost 4 hours last night with my audiologist.  I didn't even know I was taking home my hearing aids until she pulled them out started putting them together with temporary domes.  I got the ReSound Alera 9000TSG series but will eventually get the ReSound Verso.  I am waiting for them to add the TSG (tinnitus program) to the product.  If you are not familiar with tinnitus you can read about it here.  I needed top of line hearing aids because of my complicated hearing issue. I am definitely an atypical patient when it comes to medical concerns.  That was true for my "gluten intolerance", "interstitial cystitis", "migraine-lite headaches", and "loudness recruitment with sudden hearing loss". 

I am very fortunate to only be without hearing words for seven months.  I know way too many people out there that have struggled since birth or even several years.  I hold a very special place ion my heart for each of my new deaf and hard of hearing friends. 

Going back to last night and what happened.  I left audiologist office and rushed to my car to recharge my phone.  I then called the most important person in my life, which of course is my wife, on my cellphone.  She thought I was in danger because I haven't used the cellphone other than text for 7 month now.  I had to tell her I am okay but guess what,"I am talking to you on my cell phone and I can hear you clearly."  I started to cry.  I don't think my wife actually believed me.  I had to pull over because when my wife put my kids on the phone that was it for me.  I couldn't hold back the joy of hearing them talk.  I was crying so much my head started hurting.  I have missed hearing the words my special Abby (10 years old) and my witty older daughter Elizabeth (12 years old).  I called the rest of my family after that to share the good news with them.

NOW!  PLEASE keep in mind, hearing aids is not a solution to normal hearing.  I will never hear as a normal person again.  Once you loss your hearing and damage your ears - its gone.  But with technology today some are able to use devices to help or at least communicate using texting or American Sign Language on a videophone.  

My brain needs to hear new sounds I have not heard in awhile.  I have suspicion my hearing has never really been okay and when I got sick in April with mastroiditis that was the end.  My brain has to get use to hearing my own voice and others called a learning curve.  ALSO, hearing aids may not be the best option for me.  My ears are progressively getting worse and one day might need cochlear implants but for now I will enjoy my ASSISTED HEARING DEVICE.

Finally, even though I can hear with my hearing aids, there is still a special place in my heart for silence and helping the world understand silence is golden.

Hello. May I Take Your Order?

I was starving after seeing the audiologist today and had to make a quick stop to get something.  I drove up and went through the drive-thru because I didn't want to go inside and had to get home to watch the kids.  I was just sitting their waiting to tell the person my order and then it hit me . . .

I CAN'T HEAR THEM.

It turned out they were asking me for my order a few times.  I ended up going inside and explained I am deaf just wasn't thinking much about my ears and hearing with them.  .

Habits can build you up or tear you down.  Bad habits are easy to find and learn and when you want to break them it takes forever.  Good habits are like diamonds you have to polish them daily.

My habit today was thinking I could hear with my ears again while going through drive-thru.  But you know what, given this week is Deaf Awareness Week,  I was able to use this experience to share that not all hear the same way but we all hear one way or another.