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.

 

 

 

 

 

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

1 Year Anniversary - Diving in Deep

“Two feet in and full speed ahead” with my deafness.  I am not sure if my family is ready to handle me embracing ASL and deaf culture and my acceptance of progressive hearing loss.  NO, I don’t want to rush into surgery and plug another device (a cochlear implant) into my head.

This month will mark my one-year anniversary of going deaf.  I didn’t have a difficult experience until severe ear pain landed me in a hospital bed for 10 days.  I had mastoiditis - a bone infection - which doesn’t necessarily cause deafness but can be quite dangerous.  I did not get my hearing back.  The doctors are still not sure why. You can read more about my experience in my blog post Guy With Two Pillows Between His Ears.  I have accomplished a lot in the past year:

1.  My Facebook friends went from 300 to 500.

2.  I started  my “World of Silence” blog.  I wrote 62 blogs and received 50K pageviews.  

3.  ReSound has used two of my “World of Silence” blogs to help others in need.

4.  I was invited to start a weekly blog at Deaf-Insight.  I guess Monica Hood fell in love with my writing.  

5.  I’ve never missed a Deaf Chat

6.  I am learning ASL so I can communicate with others.

7.  I was finally able to see a movie using the SONY captioning glasses.

8.  I got a CaptionCall phone to communicate with my family.

9.  I got the ReSound Technology  Alera 962TSG, PhoneClip+, and MIniMic (a.k.a Wife Mic).

10. I’ve met some amazing people online - Dan Schwartz, Monica Hood, Shanna Bartlett Groves, Cynthia Dixon, SayWhatClub, DeafandHoH.com, and many others.

11.  On my blog I ran a fun deaf-insight contest; 10 people won Dave Ramsey Total Money Makeover books and 1 person won a Deaf-Insight T-Shirt.  You can read the story here: Hearing Aids Are Expensive

As you can see my list is long.  In fact, I have a separate thank you list here: Thank You. I am not poetic nor a research writer but I write with my heart.  I write with the intention to bring people into my world so they can learn to appreciate silence and know deafness is not the end of the world.  I get so upset when I tell people I am deaf or becoming deafer and they say, “I’m sorry.”  My response is usually, “I’m sorry you hear.  I’m sorry you can’t experience a moment of silence in a world where there is so much noise and nowhere you can go to find quiet.”  

Question and Answer Time:

1. What is going on with Jeff - I Year Later

My hearing is getting worse.  I go for another hearing test in a week and hopefully the audiologist will be able to make some adjustment.  My last hearing test showed that my hearing loss is severe and now I have difficulty hearing even with my hearing aids. Although hearing aids are a wonderful resource and I’m thankful ReSound has amazing technology, there are not a perfect solution. It can be annoying to stick something in my ear just to hear annoying people and sounds.  I am finally able to function at work with my hearing aids and devices and listen to conversations on telephone, but it took a long time to get to that point.

2.  Where do you feel at peace?

I feel at peace when I am writing my blog, when I can pull out my hearing aids, when I am with my family, and being myself.  I am at peace being deaf.  I don’t like when people say, “I am sorry for your loss”.  I don’t see my deafness as a loss but more of a gain where I can chose to block out noise just by pulling out these two little things in my ears.  But, I also believe God and my wife gave me strength to work through my fear and find peace.

3.  What will Jeff do next?

It was my goal at the end of 2012 to find offline deaf people and connect with them.  It’s not easy to find people in my area who sign or admit they are deaf - I DON’T KNOW WHY.  For me, I wear my deaf t-shirt everywhere I am not ashamed to tell the whole world I am deaf.  Most of the time people don’t care.  Well, I am meeting deaf people offline.  I joined an ASL Meetup.  I am taking an ASL course at the University of Georgia so I can properly communicate with my family in the evening and weekend when my hearing aids come out.  Finally, I want to start a support group for married couples struggling with hearing loss.  I know there are organizations but with my professional background as a marriage counselor and growing knowledge of deaf culture, I can help others in need.

“In conclusion” . . . Sorry but conclusions only happen when you die, and I have only just started living in this wonderful World of Silence.

SuperJeff

LOOK VERY CLOSELY.  DO YOU SEE ME IN HERE?


RIGHT . . .  YOU WON’T!


I have had my hearing aids almost seven months now. I’m happy with them most of the time.  When I bought them seven months ago, I was really excited to be able to hear sounds like my kids playing, my wife’s kiss, my cats meowing, and the phone ringing.  But, even with hearing aids, I still struggle. It feels like it takes me 100 times more effort than a hearing person to get through a day.


The people I speak with have no idea how much effort it takes me to listen to them, to concentrate on each word and make sure I understand what they are saying before I respond.  I find myself either putting my foot in my mouth or asking a lot of questions, which can be frustrating to everyone.  I have high quality ReSound hearing aids and assistive technology but even they have their limitations. I don’t regret having hearing aids, but  people seem to think that with them my hearing is back to normal.  My first method of understanding what people are saying is lipreading and watching body language, then I call upon my hearing aids. It doesn’t work the other  way around - most hearing people don’t understand that. I have to read lips, use my hearing aids to listen to sound, and draw upon all my learned skills during the day, whereas a hearing person just has to listen.  Hearing aids are not like corrective lenses -  you don’t get “20/20” hearing. Sorry, but the technology is not there yet.


There are some nights after working an eight to nine hour day taking multiple phone calls, that I can’t wait to get in the the car and pull out my hearing aids so that I can enjoy the  World of Silence the rest of the evening.  I guess I need to lower my own expectations.  I want to make my wife, my kids, myself, my company, and parents proud, but given how new I am at being deaf I need to re-examine my  expectations and clearly communicate my  boundaries. It will take time to adjust to being deaf after 41 years of hearing, and it will take time to adjust not only to using hearing aids and communication devices, but also to compensating for their limitations.

AND THE WINNERS ARE . . .

Drum Roll please . . . . . !

After several sleepless nights and numerous instant messages back and forth between Monica Hood and me, we finally came to a decision.  But before I announce the winner let me first say a few works in review of your comments on my post Hearing Aids Are Expensive.

In my post I mention how expensive hearing aids can be, and for many of you having to pay out of pocket can make it impossible to buy what you want or get the type of service your ears deserve.

We are fortunate to live in a country that offers hearing aids, organizations that help people with hearing loss, ASL classes, educational access for the deaf, and the internet to keep us connected.  There are so many countries that have so much less.  I believe we can agree that we are blessed.

Our personal debt did not accumulate overnight and my wife and I both knew that it would take time to to dig ourselves out of our mess.  Once we received the Dave Ramsey book Total Money Makeover, my wife and I got on the same page and our relationship changed - it got better.  We started working together and developed a plan to get out of debt and stay out of debt.  My prayer is that you also will develop a plan, not just for saving up for hearing aid devices, but for peace of mind.

I want to thank Monica Hood for allowing me to host this contest on Deaf-Insight. I look forward to hosting others in the future.

Now I have to admit I had to bend the rules a little bit because the entries were really, really good.  So the book winners are:

Michelle Trzecinski, Britt Hastings, Chazz Griffith, Pearl Feder, Jessica Congdon, Kathy Patrick, Kristina Bow, Amanda Donaldson, Tracy Downs, Cynthia Dixon

Congratulations!  You all really put forth a lot of effort in writing your responses, and I appreciate your honesty.  You will receive an email shortly requesting a mailing address so that I can ship you your book.

There is one story that really stood out above the rest and she will receive a Deaf-Insight T-Shirt.  And that person is:

Drum Roll please . . .



Kathy Patrick


One of Kathy’s comments was, “Hearing aids bring back a special ‘quality of life’, with being able to hear what you couldn't, but the price is just too expensive for many people.”

Again, thank you for everyone who read my blog and participated in the contest.  I had so much fun

Ears Infections - Tinnitus - Stomach Acid - Drugs

What do ear infections, tinnitus, stomach acid, and drugs all have in common?  First you have to read my tinnitus story here My Wife is Going to Kill Me.  As you can see, I have had tinnitus most of my life and it got worse when I became deaf. Also I have always been plagued with ear and sinus infections as far back as I can remember, which I think played a role in me going deaf. You can read more about my story at  World of Silence to get an idea of what I have been through.

Within the last three months I have had two sinus infections..  I get really scared when I start taking antibiotics and steroids, not because I am against them, but because I don’t want to end up with my body getting so used to them that they become ineffective.  Several months ago I had to use a PICC line because oral antibiotics were not sufficient to get rid of my infection. For the past few weeks my  tinnitus has been so bad it has disturbed my sleep.  I tried everything I knew: nasal washes, cutting out caffeine, resting, and so forth.  No improvement.  This week I went to the ENT and he told me that I have a sinus infection again and when I lie down the mucus is going up into my ears, aggravating my  tinnitus.  He suspects I have acid reflux, and I will have to undergo a test to confirm that.

I am mentioning this in a blog because if you have had similar symptoms of sinusitis and tinnitus, you may want to ask your doctor about acid reflux. These are are some of the symptoms of acid reflux::

1.  Hoarseness, especially in the morning
2.  Chronic throat clearing or persistent cough
3.  Chronic sore throat
4.  A feeling of something caught in the throat
5.  Excessive mucous/post nasal drip
6.  Difficulty swallowing
7.  Restless sleep

Can you answer “YES” to any of these?  I know I can.  The diagnostic test for acid reflux  is the Dx-pH Test .  Now comes the interesting part:I did some research online and found that most of the common over-the-counter medications for acid reflux are ototoxic.  I have read different opinions regarding what ototoxic class acid reducers should be in, but I think each person will need to evaluate this for him or herself.  For example, I had to stop one of the medications I took prior to my deafness because it was ototoxic, and eliminating it  helped reduce my tinnitus.  But, if the possibly ototoxic acid blocker prevents future sinus infections, that could also reduce my tinnitus, and it would definitely improve my overall health. I have to weigh the costs and benefits

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!