Tuesday, November 26, 2013

Jeff Implant Activation



YEP! That is me hearing sounds for the first time in two years.  My cochlear implant surgery was November 1, 2013.  The surgery was a big success with really no issues at all.  I had to wait for three weeks to get activated, which is when the audiologist turned on the electrode inside my head.  Here is a quick video to explain:



I had high expectations of hearing something on November 22 when my cochlear implant was activated.  Everyone told me, "Keep your expectations low but hope for the best."  I knew that many people don't hear anything DAY 1.  The brain needs to learn sounds that one might not have heard at all or for some time.  I am lucky that I have only been without sound for two years, but never did I expect to hear words and sound so quickly. 

DAY 4 - My hearing of sounds was tested at normal hearing person level.  People still sound like robots and monotone but I know that will improve over time and with practice. 

I am so thankful for Edie Gibson who referred me to an amazing doctor in South Carolina.  It's funny, you don't need to go to the number one place to have surgery. Just find a doctor who takes you seriously and has done a lot of successful implants.  I want to give thanks to Dr. Erin at the Auditory-Verbal Center in Atlanta, GA, who has worked patiently with me answering all my questions;  and to my mom, who travelled from Arizona to Atlanta to take care of me during recovery so my wife could continue to work.  My mom didn't have too difficult a time since I slept a lot.  Finally, thank you Advanced Bionics for having the technology available.  I can't imagine going with another brand, having experienced all the support I have received just days after activation. 

I hope to be an inspiration to others who have reached the point of considering an implant.  I am still deaf because I can take off my device and the world is silence, but now I can choose to enter the world of sound.

Tuesday, November 12, 2013

New Adventure


 
November 1st, 2013 - Cochlear Implant






















I have been deaf for two years.  I lost my hearing suddenly as the result of a massive infection following years of sporadic ear infections.  I never got my hearing back and after using hearing aids for a short time they became useless.  


Nobody plans to go deaf but things happen.  I accepted my deafness and decided to be positive.  I did whatever I could to learn about my deafness and welcomed new ways to communicate.  When I lost my job and had to consider the prospects of new employment with a severe hearing loss while my hearing aids became less and less usable, I decided it was time for cochlear implant.  I wanted to hear my family’s voices, listen to music, and be more employable.  I am friends with many deaf people and they live happy lives without cochlear implants.  I have to say that its available but not for everyone. Getting a cochlear implant is a big step and a personal one.  Even though I have a cochlear implant now, I am still deaf.  I can switch off my device anytime I want and have the world go silent or turn it on and listen to everything.  


It is DAY 4 after surgery and as you can tell I am feeling better.  But here are my thoughts:


1.  “It feels weird having metal in my head.”
2.  “This tinnitus is driving me crazy.”
3.  “Nobody told me about drainage.” BTW, I don’t like fluids.
4.  “I thought it would hurt more”
5.  “I am so tired.  I feel like sleeping all day.”  I am glad I didn’t plan school or other activities during this recovery time.
6.  “I am so ugly.”  Yes, I am vain.  I didn’t expect my head to be shaved quite so extensively so that  my 8-10 stitches are highly visible.  I want my body back together like before.  My daughter thinks I look like the characters in the movie Coraline who’ve had new eyes stitched on with thread.
 

 
 I think she was being kind in calling me a stitched-up person.  I feel more like a:
 
 Dalek from "Dr. Who" TV series.
 
As you can see I am in good spirits.  I am glad to have my mom here from Arizona to help out while my wife goes to work and takes care of the kids.  I go back to see the doctor on November 15th to have these stitches removed.  The exciting day will be November 22nd at 3pm (EST).

Friday, October 25, 2013

Recovery - What Should I Watch


 
 
 
 
I will be home from cochlear implant surgery November 2nd.  My surgery is November 1st but I am staying the night at the hospital.  The surgery is in South Carolina, which is four hours away so instead of sitting in the car for four hours after surgery the doctor wants me to stay. 
 
Cochlear Implant recipients say it's about one week recovery but everyone is different.  Right now, I am done with my two graduate courses and it will not start again until 2nd week of November.  I need suggestions on what to watch on Netflix or Hulu.
 
 
Recent favorites
Teen Wolf
Dr. Who
Walking Dead
Revenge(y)
Arrow
Masterchef Junior
 
I need some ideas.  Tell me what are you watching.  I'll try it.
 
 
 

 



Monday, October 21, 2013

T-Minus 9 Days


MORE DAYS




Anticipating Great Things, Anxious at times, and Amazed!
It is going to be an amazing experience - get my hearing back.  The days are flying by and soon I will be in the car driving to South Carolina getting ready for surgery.  You can read about it here why I have to go out of state for surgery - http://www.deaf-insight.com/15/post/2013/08/ci.html.  I have read some amazing stories of Facebook friends who received their cochlear implant and they are hearing words.

Two of my friends have been encouraging during this time period.  Lisa J. and Rick S.

 

Tuesday, October 15, 2013

Cochlear Implant - Family Thoughts

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
KAREN'S THOUGHTS ON JEFF GETTING A CI
"From the moment he went deaf, Jeff has been researching cochlear implants. By now
he’s an expert. He’s done a great job without them. For a while the hearing aids worked well, and it took some of the stress off at his job. But then his hearing started going downhill again. We learned sign language together, and we can communicate to a certain extent. But I will never be that fluent - not enough to share my deepest thoughts and concerns. I can ask what he wants to eat, if he’s tired, what he wants to do. It’s utilitarian. But it is not my first language of emotional and intellectual communication. I will be very glad to be able to just talk.

Before he went deaf, we had been to a few music concerts, something we had not done before. We were listening to new music together. I’ve missed that, and I know he has, too. Recently I started listening to a podcast and I though, oh, Jeff would enjoy this. But of course he can’t listen to it.

There are many small things that come up - trying to talk on the phone, making sure that I fill in if someone asks him a question he doesn’t notice, remembering to not turn away when speaking or call out from another part of the house. And I really hate that in the dark both sign language and speech is useless. Lately I’m the only one who hears the ominous sound of the cats throwing up at night. That won’t change, of course, since he will always be able to switch off whenever he likes.

My greatest hope, though, is that the CI will allow him to pursue the career he wants - teaching. I also hope that he will continue to sign and be part of Deaf culture, because I know that’s important to him, and I think he has a lot to offer both hearing and Deaf cultures."

---------------------------------------------------------------------------------------------------------------------------
Lizzie (13 year old daughter) writes:
"I am extremely excited for my dad getting a cochlear implant. I’m worried that something might go wrong, but other than that, I’m thrilled. Once he’s able to hear, he can’t just turn away when he doesn’t want to listen. I won’t have to tap on his arm every time I want to speak. I think this will bring our family closer since it will be easier to communicate. I hope the cochlear implant will live up to his expectations, since I know it won’t be the same as before."
---------------------------------------------------------------------------------------------------------------
Abby (11 year old daughter) writes:
"I want Dad to hear me laugh and I also want him to be able to hear Dito (our cat) say
“meow” all the time, because it’s very annoying and I wish he could make it stop. I want him to hear me play the clarinet. And also so he can watch a movie without captioning. I will be able to talk to him without having to repeat myself all the time."

Cochlear Implant

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
I want to hear!


I can’t stand my hearing aids. I have reached the point where I can’t hear anything but static even with the multiple adjustments I have received.  My wife and I went out to dinner the other night and I wore my hearing aids so she wouldn’t have to sign all night long.  She gets tired signing and at times I do too. But I had to keep asking her to repeat what she said.  I was so pissed that I ripped my hearing aids out and put them in my pocket.  It is so much easier for me to lipread with no hearing aids or sound at all.    


My ENT said it is time to consider a CI (cochlear implant).  By the time this gets posted I will have had my CI evaluation, which is the determining factor.  I didn’t qualify at the last evaluation because the audiologist wasn’t thorough and the doctor simply didn’t want me as a patient.  I just learned a new hearing term called auditory fatigue. My hearing gets really bad as the day progresses, so having a CI evaluation at 3 pm rather than in the morning makes more sense.  


Even after I get a CI,  I will still consider myself deaf.  Please understand that a CI doesn’t fix me. I will not hear the way a hearing person does. I want to continue signing and participating in Deaf culture.  But the CI is a better device than my hearing aids if I want to participate in hearing culture. Here are the reasons I want a CI:


1.  I want to hear my daughters’ voices, especially before they graduate. Fine! - my wife’s voice, too.
2.  Having a CI will open up more options as I change careers.  (BTW, my next blog post will be about my career move and hearing).
3.  I miss music.


There is some contentious conversation in deaf cyberchat about whether deaf people should have CI’s.  I have had mixed feelings, but with the progressive deterioration of my hearing over the past six months and my recent layoff, I’ve had time to reflect on my future. Getting a CI is a personal choice based on what each person needs to follow his or her particular path. The deaf community should not look down on or shun a CI recipient. People with CI’s should in turn be accepting of those who don’t want to wear anything at all. Keep signing and learning about Deaf culture.  We all have to remember that once you lose your hearing it is gone.  You are deaf. The only difference is that some people - for any number of reasons - want to use devices that will help them hear sounds.   


We are all on the same boat.
 
 

Tuesday, October 8, 2013

CI on Saint's Day

  



















After visiting all the doctors and several audiologists here in Georgia and not being pleased with most of them I decided to go out of state to visit a doctor that came highly recommended.  I made a good choice.  The doctor was knowledgeable, experienced, and answered all my questions. The good thing is I can keep the CI audiologist here in Georgia, which was really important to me.  My audiologist, Dr. Erin Rellinger from Auditory-Verbal Center, has been so patient and helpful.  It was important to me to have the right device from Advanced Bionics, and my new friend Edie Gibson, from Advanced Bionics, helped me find an out of state physician.  I am pleased to say my surgery is scheduled for ALL SAINTS DAY.  I hope I am blessed, that God looks down from Heaven and there are no issues with surgery.  Now that I have the hospital, the doctor, and the audiologist on board I can rest and wait.

I miss the ability to understand what people are saying. Reading lips is hard work.  My wife and kids are probably tired of me saying, “Please repeat”.  I don’t make them sign enough but with the cochlear implant technology and ClearVoice to improve my poor speech recognition I will be able to hold a conversation with anyone in the hearing community.  But,  there is something my family and friends (offline and online) need to understand. A cochlear implant is an assistive device; it doesn’t make me a hearing person.  When I put on my device each morning it will help me enter the hearing world, but that is not the same thing as being a hearing person.  I will be deaf the rest of my life and I accepted that a long time ago.  But, here are some of the things I am looking forward to when I get activated, meaning when my device gets turned on by the audiologist:


1.  Understanding what people are saying around me or one-on-one.
2.  Music - I still listen to music now with my hearing aids but I miss the words.  
3.  Cellphone - to hear a phone call on my cellphone and stop telling people to call my Caption Call phone.  Texting on my cellphone is great but I want to dial and hit the send button.
4.  Hear my family.  I hear sounds but I really struggle with my daughters’ voices.  
5.  My cats - to hear them meow when I walk into the house.

Look at what cool color I picked for my CI.
 


Please stay tune to my next BLOG.  I have 3 special guests posting and you don’t want to miss their message.




Thursday, October 3, 2013

DEFINE: EXPECT

Expectations, we all have them.  We may not like knowing we have them but we do.  We expect our alarm clock to go off at a certain hour so we can jump into the shower.  We expect our children to behave a certain way during dinner when you have guests. We expect our pets to not bark or bite visitors.  We expect our bed to be comfortable with big fluffy pillows so we can drift into dreamland in under five.


ex·pect
ikˈspekt/
verb
verb: expect; 3rd person present: expects; past tense: expected; past participle: expected; gerund or present participle: expecting
1.regard (something) as likely to happen.
2."we expect the best"


My expectations on September 16, 2013, walking into the CI surgeon’s office were that my surgery would be scheduled and I would be out of the office in less than 45 minutes flat.  I added the extra 15 minutes since it was on the 9th floor.  No, my expectations got the best of me and I ended up snared in hospital politics with an audiologist that didn’t know much other than why I should not like the product I was wanting to implant.  I thought the position of an audiologist was to help a deaf person restore hearing using the best technology to meet his or her needs, not to have a product debate.  I had to pull in more powerful people than me to help me get what I want.  Now I have expectations of Advanced Bionics. If they don’t come through for me here in Georgia or I will have to go somewhere out of state for surgery.  I made my phone calls to Advanced Bionics and I will find out next week what happens over at Emory Hospital Midtown.  


My final thought is this - hope more, expect less.

Sunday, August 18, 2013

Choices

"It is our choices... that show what we truly are, far more than our abilities."
J. K. Rowling




“Choices”, a powerful word.  When I was working at my previous employer I saw many paths but ignored them.  I made a choice not to go - to play it safe.  Maybe there are voices in your head or there are some people out there saying “you are crazy to think of doing XYZ,” but in your heart you see a path.  We all have this amazing gift called “choice”.  

When I lost my hearing I made the choice not to panic and investigate how to cope, how to get support, and how to find the best technology to get some sound back.  I am not really talking about the small choices we make daily (though I don’t minimize those because for some getting out of bed is not easy), but the big ones like changing career paths or getting married. When we face an important decision, we need supportive friends to help us make the right choice.  In the popular film and book series, Harry Potter had to make some difficult choices.  Did he make those choices alone?  Do you think it was easier for him to chose which path to take having his supportive friends there with him?  

Last Thursday morning I received a text message from my manager asking when I would be coming into work.  I thought it an odd message since she knows my schedule. Moments after I arrived at work my position was terminated.  I was one of many laid off that day.  Now, I could get really upset and put up a fight. I could say they didn’t give me sufficient accommodations.  But when I look at the whole picture my company gave me a lot, and I am thankful for that.  When we chose to see more than one path we gain so much more clarity about our present state of mind and sometimes our future.  I feel sad when I hear people bad mouthing past companies or even relationships - just move on.


My challenge to you this coming week or month is to seek paths - more than one.

Tuesday, May 7, 2013

Karen, My Wife



























Hi, I’m Karen Swartz, Jeff’s wife. He asked me to write about my experiences living with a suddenly deaf person.

Jeff and I have been married for nearly 14 years and we have experienced many health challenges over the course of our marriage, including the preterm delivery of our second child and her diagnosis with an incurable genetic condition, my brush with breast cancer, his interstitial cystitis, our late diagnosis with celiac disease. We have a lot of experience in dealing with the unexpected.  When Jeff became increasingly ill last spring and finally ended up in the hospital with a bone infection and sudden deafness, I did what I usually do in the midst of crisis - focus on getting from point A to point B. I tell myself I can always fall apart later, and sometimes when later arrives, I’m past the point of falling apart.

I’m amazed and impressed by how quickly Jeff has adjusted to being deaf. There were hard days in the hospital, when nurses would try to speak to him over the intercom, despite my repeated instructions that he would not be able to hear them to respond. And in the first months deafness sometimes came with the additional cost of severe pain and noise sensitivity. That was a terrible time, because there was nothing that helped - no pain medication gave relief and no matter how quiet the girls and I tried to be, sometimes we would drop a dish or accidentally slam a door and bring on a new crisis.  

In the beginning the most frustrating part for me was not knowing the source of this sudden catastrophe. No doctor, no specialist knew why he developed such a severe infection, why that resulted in deafness, and why there was such unrelenting pain.  I was more concerned that he might have to endure life-long pain than that he was deaf. Deafness seemed far preferable to me.

Jeff is not the sort of person to give in to despair or hopelessness. When he was sufficiently well enough to focus, he started doing research and found online support groups. I went with him to visit doctors, specialists, and audiologists. I was greatly relieved when he found out that hearing aids would help, at least in the short-term. Otherwise I wasn’t sure how he would keep his job or how we would support ourselves financially if he had to take time off to get a cochlear implant. The potential financial impact was always at the back of my mind, and it continues to this day. If his hearing deteriorates further, he will almost certainly have to get a cochlear implant if he wants to continue in his current or a similar job.

But I’ve been part of so many positive developments as well. I love seeing Jeff immersed in anything that interests him, and he is very interested in deaf issues and deaf culture.  I love that he wants to help others in similar situations. His blog has given him an avenue to express himself through writing, which he has always wanted to do. Before we found ourselves in this situation, I had never given a moment’s thought the deaf world, had never met anyone deaf, really, or thought about the sorts of challenges deaf people would face. I had no idea there was a deaf culture, or that there were so many sensitive issues related to what it means to be deaf, or that you could view deafness as something besides a disability.
There are some daily challenges. No more chats as we drift off to sleep, not even via sign language. I often forget to make sure I’m looking at him when I speak if he isn’t wearing his aides, and sometimes I forget that I don’t have to face my kids for them to hear me. I worry about him not being able to hear alarms, sirens, oven timers, or calls for help. I worry about job security and discrimination. I worry that I will never master sign language.

But for the most part, I feel good about things.
 
 
 
 

 

Tuesday, April 23, 2013

SOUND Relationships



ASL "Marriage"




 
 
 
 
 
 
 
 
 
 
 
 
 
Relationships, we need them.  Our lives depend on these connections.  We help each other grow physically, emotionally, and spiritually.  Without relationships we eventually break and fall apart. One of the most important parts of developing a SOUND RELATIONSHIP is communication. But what if one or both of you or both have hearing loss?


I want to first talk about personality, which is also called temperament. Knowing your temperament will give you a better understand of yourself, what you want, and need, and it will give you insight into how you related to others. Knowing your communication style as well as that of your partner will improve your communication.  There is a scientific approach to analyzing temperament but for now I will give you a general understanding.


Temperaments
What are the four temperaments?


Sanguine
The sanguine temperament is fundamentally sociable and pleasure-seeking; sanguine people are impulsive and charismatic. They tend to enjoy social gatherings, making new friends and tend to be boisterous. They are usually quite creative and often daydream. However, some alone time is crucial for those of this temperament. Sanguine can also mean sensitive, compassionate and romantic. Sanguine personalities generally struggle with following tasks all the way through, are chronically late, and tend to be forgetful and sometimes a little sarcastic. Often, when they pursue a new hobby, they lose interest as soon as it ceases to be engaging or fun. They are very much people persons. They are talkative and not shy. Sanguines generally have an almost shameless nature, certain that what they are doing is right. They have no lack of confidence. Sanguine people are warm-hearted, pleasant, lively and optimistic.


Choleric
The choleric temperament is fundamentally ambiguous and leader-like. They have a lot of aggression, energy, and/or passion, and try to instill that in others. They are task oriented people and are focused on getting a job done efficiently; their motto is usually "do it now." They can dominate people of other temperaments with their strong wills, especially phlegmatic types, and can become dictatorial or tyrannical. Many great charismatic military and political figures were cholerics. They like to be in charge of everything and are good at planning, as they often can immediately see a practical solution to a problem. However, they can quickly fall into deep depression or moodiness when failures or setbacks befall them.


Melancholic
The melancholic temperament is fundamentally introverted and is given to thought. Melancholic people often are perceived as very (or overly) pondering and are both considerate and very cautious. They are organized and schedule oriented, often planning extensively. Melancholics can be highly creative in activities such as poetry, art, and invention - and are sensitive to others. Because of this sensitivity and their thoughtfulness they can become preoccupied with the tragedy and cruelty in the world and are susceptible to depression and moodiness. Often they are perfectionists. Their desire for perfection often results in a high degree of personal excellence but also causes them to be highly conscientious and difficult to relate to because others often cannot please them. They are self-reliant and independent, preferring to do things themselves in order to meet their standards. One negative part of being a melancholic is that they can get so involved in what they are doing they forget to think of other issues. Their caution enables them to prevent problems that the more impulsive sanguine runs into, but can also cause them to procrastinate and remain in the planning stage of a project for very long periods.


Phlegmatic
The phlegmatic temperament is fundamentally relaxed and quiet, ranging from warmly attentive to lazily sluggish. Phlegmatics tend to be content with themselves and are kind. Phlegmatics are consistent, they can be relied upon to be steady and faithful friends. They are accepting and affectionate, making friends easily. They tend to be good diplomats because their tendency not to judge and affable nature makes reconciling differing groups easy for them. Phlegmatics prefer to observe and to think on the world around them while not getting involved. They may try to inspire others to do the things which they themselves think about doing. They may be shy and often prefer stability to uncertainty and change. Their fear of change (and of work) can make them susceptible to stagnation or laziness, or even stubbornness. They are consistent, relaxed, calm, rational, curious, and observant, qualities that make them good administrators. They can also be passive-aggressive.


Now you might be asking yourself, “What am I” or “I can see myself being a melancholic at times but not all the time.”  Please remember we tend to conceal our true nature from another person until we trust him, and sometimes not at all.  You might be melancholic in social relationships but really desire to be sanguine but can’t because of hurt and distrust.


Now let’s look at these four temperaments in the context of hearing.  Here is an example of a possible mess:


EXAMPLE 1:
WIFE - SANGUINE - Hearing
HUSBAND - melancholic - Deaf


EXAMPLE 2:
WIFE - Phlegmatic - Hearing
Husband - Choleric - Deaf


EXAMPLE 3:
WIFE - SANGUINE - DEAF
HUSBAND - Phlegmatic - Hard of Hearing



Relationships at any stage have challenges but hearing loss can add additional stress.  I believe once we understand how we communicate -- our temperament -- we have a better chance of making a relationship last.  Here are some ideas to think about:


1.  What temperament am I?  If you want to read more about temperament, I recommend reading a book called Please Understand Me.  You can also contact me and I will send you a test booklet for a fee that will also include marital counseling session with me.  WARNING:  Do not assume your partner is a particular temperament based upon situation.  A true temperament is a personality you are born with - your true self - the self that is sometimes scared to come out.


2.  How can I explain to my partner how I best communicate and when?  And how does my partner best communicate with me?  Note: a melancholic person may need time to think so don’t rush the conversation.  


3.  Communication takes practice.  Practice means you will make mistakes.  We hope our partners will forgive us and that we will not repeat our mistakes.  Take time to love and forgive.


 


This is my wife Karen Swartz.  We have been married for almost 14 years.  She is amazing.  I guess any old dude would say that still being married that long.  But, we have been through a lot as a family with many illnesses, deaths, job loss, and much more than one family should go through.  Here are our results:


Jeff - Choleric/Sanguine - Deaf
Karen - Phlegmatic - Hearing


I guess you can say we have an interesting household.   Making sure both parties are understood is important.  I have had to learn to silence myself and let Karen talk, but being deaf I don’t always know when she is done talking, and because she is Phlegmatic, she isn’t likely to be insistent. I am so fortunate to have learned lipreading, otherwise our marriage would be in trouble.  We are now taking ASL classes to learn how to speak with our hands, another way for Karen to express herself and for me to know when she needs to speak.  The Sanguine in me wants her to communicate because the sanguine wants to feel connected.  Interesting!


What temperaments are at play in your relationships, whether romantic or platonic?


SPECIAL BLOG NEXT TIME - STAY TUNED