The Odyssey of Hearing Loss: Tales of Triumph for Families Hearing Loss Association of America June 23, 2012 Michael A. Harvey, Ph.D. 508-872-9442 [email protected]

Artwork by Nick Curtin, a 15-year old deaf boy.

“The two towers are weeping and hugging as they collapse.”

“I’m not saying I don’t have intimacy issues. I’m just saying that I prefer to work on them myself.”

My background

Our Agenda  Common couples dynamics  Adolescent hearing loss issues  Externalizing hearing loss

 Family tales

Couples Issues

“Me and your granddad have been married for sixty years, but he still whispers sweet nothings into my hearing aid.”

Challenges for HOH couples

Minimizing effects of HL Communication mishaps: falsely assuming understanding. For most common configuration of HL (high freq) beware of consonants: /s/, /sh/, /t/, /th/, /ch/, /p/, /k/, /h/, /g/.

Can you guess what this says??? Only vowels:

I __i__ __a_ a _.

i_ ___ _o__ _o_

Only consonants:

_ th_nk th_t _ y.

_t m_y sn_w t_d

I think that it

m a y s no w t o d a y.

Aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, the olny iprmoetnt tihng is taht the frist and lsat ltteer be at the rghit pclae. The rset can be a total mses and you can sitll raed it wouthit porbelms. Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe.

Challenges of “hoh” couples cont.

Managing betrayal for being misunderstood/left out

Balancing HOH and H: both spouses have needs

H spouse self-care

The shadow spouse "It is the rare individual who looks at me and asks me how I am doing; almost everyone wants to know, and it's understandable, how my wife is. Occasionally though, I need some attention. When I do ask for attention, it is always tinged with guilt as though I do not have the right to complain. People almost always look at the person in the wheelchair, seldom at the person pushing it.”

David Luterman

Challenges of “hoh” couples cont.

The good-enough hearing partner Hoh spouse displacing anger on the H spouse H spouse bearing witness to oppression

The importance of relationships Finding the right balance

Similar others

Dissimilar others

"Denial ain't just a river in Egypt." Mark Twain

You must first understand your own feelings before you can effectively relate to your hoh spouse Common thoughts & feelings of hearing spouses re hoh’s denial •

I feel so bad for him. He’s going through a rough time..

•

Don’t you see you need help? You’re in denial!

•

Go get hearing aids! You’re being selfish

•

If you really loved me, you would…

•

I feel sooooo alone

Beware of Co-dependence

This is NOT merely reaching out to help your loved one hear better. “If you habitually become the ears for your hearing spouse, giving into his demands against your better judgment, repeating what he misses, interpreting messages, making him feel he’s okay as he is without the need to seek any remedy for his hearing problem – you are in a co-dependent relationship.”

Richard Carmen

Tips to reduce codependent behavior  Stop supporting a system of communication that doesn’t work. The illusion that one’s hearing is normal is reinforced when others do not identify “the misses.”

 Need to understand psychological reasons why your loved one is resisting help What stage of change  Don’t be his ears  Accept that he will fail in communication; it’s part of a process toward treatment

 Control your fear of conflict with him

Tips to reduce codependent behavior continued

 Accept that if he doesn’t change, it’s not your fault. Horse/water theory  Give him choices, options and helpful alternatives, but do not give him demands, threats and consequences.  Stop repeating yourself & raising your voice  Don’t be his interpreter on the telephone  Find a code for pointing out that he needs help with hearing

Marital Policies and Procedures

“Marriage isn’t just a spiritual communion, it’s also negotiating who takes out the trash.”

Every day except May 19th

May 19th!!!!!

2 by 3

The three most important words:  Communication,  Communication, &  Communication

Need for policies & procedures for

COMMUNICATION

Communication Policies

Be proactive, not reactive Be patient, relaxed, non-accusatory and look for the humor H: don’t yell from other room; HOH: don’t start communication from other room Instead of asking “Do you understand?” work out way to verify communication. ie hoh spouse to repeat what hrng spouse said. Agree on ways to distinguish whether hoh spouse is withdrawing verses not understanding. ie Ask.

Communication Policies cont

Agree on finite expectations for H interpreting Reduce background noise -- e.g., preferential seating in restaurants, request music be turned down Maximize visual cues – e.g., Move closer with face to face visual contact, keep things away from mouth, reduce background lighting, ensure ample light Maximize gestures Context: Help hoh anticipate what you say Beware of prosody (speed at which you speak) Vary how you repeat something hoh has missed. Rephrase with different words.

Story submitted by Dr. Richard Byrnes “At the beginning of my shift, I placed a stethoscope on an elderly and slightly deaf female patient's anterior chest wall. 'Big breaths,' I instructed. 'Yes, they used to be,' replied the patient.”

Adolescence

Adolescence begins when children stop asking questions, because they know all the answers.

Importance of collaboration

Reconciling one’s identity crisis

“What would you like to be called?”

Are you

deaf? Deaf? Hard-of-hearing? Hearing impaired? Person with a hearing loss?

Reconciling one’s identity crisis

Attempting to collaborate with Paul (15 y/o, hoh male) First 5 minutes of session #1 Paul shouted, “I don’t need hearing aids! And tell my mom I don’t need to be dragged in here for counseling.”

“Why don’t you need hearing aids?” I asked. “They don’t help me understand anything better.” “How much do you think you understand at school without them?”

“It doesn’t matter,” Paul replied. “School’s boring. I’m gonna be a fisherman like my dad. You don’t need hearing aids to fish.”

My proposal to Paul: “You’ll wear your hearing aids every day at school for the next month. Every morning before you wake up, your father will remove your HA battery or leave it in, according to a coin flip. He’ll then give the HA to your mother who will give it to you. Neither you, your mother nor your teachers at school will know if the batteries are in or not. Every day, you and your teachers will estimate what percentage of classroom conversation you’re able to understand. At the end of the month, we’ll correlate when your HA were working with your and your teacher’s estimations of how much you understood.”

Paul’s data 80 70 60

% understood

50 40

On Off

30 20 10 0 Self

Teacher

Rater

Attempting to collaborate with Bob (16 y/o, hoh male) “You don’t wanna be here, do you?” He shook his head. “Neither do I. What would you rather be doing?” “Hanging out” he grunted. “Me too. Looks like we’re stuck with each other for a while.” No response. “How would you hang out if you didn’t have to be here?” I asked. “I hang out in my bedroom, but my mom’s always badgering me to clean it up.” “Like what I don’t do when I’m cooking, you don’t make a mess, right?” “You got that right” he agreed. “I’ll convince your mother if you convince my wife?” First a smirk, then a nod!

family

Roots and wings: Receiving family support for gaining autonomy:

The hearing sibling:

Pam’s letter

“Externalizing Hearing Loss

Narrative therapy

Michael White

Extern ques

What do you notice about these questions? • “What has the Guilt tried to talk you into about yourself?” • “How has the Fear tried to convince you that it’s unsafe to go out of your house?” • “How long has the Jealousy been trying to get between you and your friends?” • “What does the Blame have you doing with each other?” • “How much does the Bickering get in the way of your conversations?”

We have a relationship with our problems

Not “I am depressed.” Depression

Depression

Rather, “I am affected by the depression.”

One has a relationship with a Hearing Loss

Not “I have a HL.” Hearing Loss

Hearing loss

Not “I am hearing impaired.”

Rather, “I am affected by the hearing loss.”

The person is not the problem; the problem is the problem. Patient “I am unmotivated” =

Therapist “The problem has affected your energy level.”

“I am depressed” =

“The depression makes it hard for you to go out.”

“I am a worrier” =

“The worry tries to stop you for trying new things.

” “I am hearing impaired” = “The HL tries to isolate you from people.”

Example 1: 67 y/o Fred: “I came here to get my wife off my back.” First minute; first session “What’s your wife on your back about?” I asked.

“What?” Fred asked. “What’s your wife on your back about?” “Oh, she wants me to get hearing aids.” “It sounds like a battle between you and your wife,” I said. “What about my wife?” Fred asked.

“Bear with me, would you? Imagine, please, that the hearing loss is sitting in the empty seat in front of you. It’s so smart that it can even sit! What does it look like? How big is it? What color? What’s it wearing? Is it friendly or mean? What’s its name?” “It’s dark and heavy, real strong, over 6 feet tall, has bulging muscles and is wearing an Army uniform. And it’s mean, real mean. His name is Joker [Batman’s nemesis].”

We Externalized the Hearing Loss

The HL

Therapist

Fred

“The inability to understand the enemy was ‘the basic error’ in the conduct of the war in Vietnam.”

General William Westmoreland

Exploring the history and current effects of the problem (e.g., HL) 1) Eliciting a particular description of problem [eg., the Joker] 2) Mapping the effect of the problem [conflicts w spouse] 3) Eliciting one’s position or sentiments re the effects of problem’s activities [don’t like it] 4) Eliciting the why??? The person’s personal explanation or justification for that position/sentiments [I value my marriage]

1) Eliciting an experience-near description of the problem

What form(s) does the it take?

What do you call it? What is its name? What do you imagine it looks like? Big, small, heavy, light? What is its personality? Mean, friendly? What is its strength, weakness? If it had a voice, what would it say?

Example 2: Sue

Audiologist

The Eternal Eclipse

Pt “My HL is like a shadow, like when the moon eclipses the sun. It’s an eclipse that leaves me in the dark and cold. It’s an eternal eclipse because it’s not temporary like others. It’s huge, very heavy and very dark. An eternal eclipse.”

Example 3

9 y/o Jason’s drawing of “The Hearing Loss”

“The HL is a mean, green, strong, pointy-eared monster. . . I’m not sure what he wants. . . He wants me to hear worse.”

Impt announcement: New Names for Hearing Loss

2) Mapping the effect of the problem Investigating how the HL has succeeded in disrupting and has failed to disrupt one’s life.

Audiologist

The Joker

The Eternal Eclipse

Pt

pointy-eared monster

An inquiry into the HL’s successes:  The HL’s influence in the different areas of one’s life (e.g., its effects on the one’s relationships with others, on one’s feelings, on one’s thoughts, on one’s story about who s/he is a person)  The strategies, the techniques, deceits, and tricks that the HL has resorted to in its efforts to get the upper-hand in one’s life.  The special qualities possessed by the HL that it depends upon to undermine the one’s knowledge and skills and to impose its authority on the one’s life.

Examples of investigative reporter questions re HL’s successes, continued:

An inquiry into:

 The purposes that guide the HL’s attempts to dominate one’s life, and the dreams and hopes that the HL has for one’s life.  Who helps with the HL achieve its goals?  The plans that the HL has ready to put into action should its dominance be threatened.

Ext. Conv. Exercise cont.

An inquiry into the HL’s failures:  What aspects of one’s life that s/he still has some influence despite the HL’s influences.

 The counter-techniques, counter-strategies, and the tricks that have been developed by the person that have at times been effective in preventing the HL to get the upper hand and impose its authority on one’s life.  The special qualities, knowledge, and skills possessed by the person that have proven difficult for the HL to undermine and to disqualify – including the "self-talk" that one has developed .

Ext. Conv. Exercise cont.

An inquiry into:

 The purposes and commitments that have frustrated the dreams and the hopes of the HL.  Who stands with the person (relatives, friends, acquaintances, teachers, therapists, and so on), and the part they have played in denying the HL’s desires and wishes.  The options that are available to a person for taking advantage of the HL’s vulnerabilities and for reclaiming his/her own life.

Re Fred: For the next several sessions, I would investigate: 

The hearing loss’s influence in the different areas of the Fred’s life;



The strategies, the techniques, the deceits, and the tricks that the hearing loss has resorted to in its efforts to get the upperhand in Fred’s life;



The special qualities possessed by the hearing loss that it depends upon to undermine Fred’s knowledge and skills;



Who helps the hearing loss achieve its goals; and



The plans that the hearing loss has ready to put into action should its dominance be threatened.

Fred’s summary of the effects of the HL “It [HL]turns my wife into a nag, shuts me out from family gatherings, makes me feel lousy and depressed and angry . . . Maybe one of the hearing loss’s tricks is that it makes me think that other people are mumbling. The hearing loss is very smart and real tricky. The hearing loss wants control of me, probably because it has nothing better to do. He screws up my relationships so even my wife makes me come here to play this stupid game – no offense, doc.” “No offense taken,” I smiled.

3. Eliciting the person’s position or sentiments re the effects of the problem

“Why do you think the problem is a problem?”

“Are these (the problem’s) activities okay with you?” “Where do you stand on these outcomes?”

“What’s it like for you?”

Invitations to pause and reflect on the effects of the problem is often a novel experience. Frequently, this sort of evaluation is undertaken by others: parents, doctors, therapists, etc.

4. Explaining one’s justification for his/her position/sentiment Persons articulate what they value about their lives and identities; their longings, values, hopes, dreams, commitments; what is precious to them

e.g., “Why do you think you’re taking this stand/position re the problems?”; “Why is this not okay (or okay)?” e.g., “Would you tell me a story about your life that would help me to understand why you would take this position re your problems?”

Eliciting Fred’s position re the effects of the problem and his justification for his position: T: “Do you like the fact that the Joker is beating your ass?”

C: “Of course not. That’s a stupid question!” T: “It may seem obvious to you, but some people are more resigned and aren’t up for a fight.” C: “Well, I’m a fighter. I’m a fighter from way back!” T: “Who taught you to fight?”

Fred said his long decreased grandfather was a Second Lieutenant in World War II. I asked Fred several questions about his grandfather’s life, about why he joined the Armed Forces, about his bravery, what his fears might have been, how he might have felt going to battle.

T: “You aspire to be like him, you admire his bravery?” C: “Yeah.”

T: “What advice do you think the Second Lieutenant would have for how you can prevent the hearing loss from getting the upper hand in your life?” C: “He would advise me to learn as much as you can about its weaknesses, its vulnerabilities. And he’d make my wife stop calling me from the other room.” T: “A good start, but speaking of your wife, help me understand something. You came to therapy to get Wilma off your back about hearing aids, but wouldn’t getting hearing aids be an effective weapon against the hearing loss?”

C: “Yeah, probably,” he said, somewhat hesitantly. T: “So why won’t you listen to her?” C: “I’ve always been stubborn. I never want to lose a battle.” T: “But the enemy is the hearing loss [motions to the hearing loss chair], not Wilma! I bet that one of hearing loss’s tricks is to get you to fire artillery at your own forces! In fact, the war is you and Wilma against the hearing loss!” C: “The hearing loss is very cunning,” while now nodding his head. T: “Astute observation, Lieutenant! How do you think Fred could maneuver around these forces of the hearing loss to get hearing aids?”

C: “Shock and awe!” he yelled, now enjoying this discussion. “Regime change! I can blow hearing loss out of the water!” the Lieutenant proclaimed. T: “The hearing loss is a formidable enemy. Simple sanctions obviously aren’t going to work. You, Wilma and the Lieutenant need to join forces and launch a full scale military campaign with covert and overt special combat operations against the hearing loss! Maximize your fire power with air, naval, land invasions to strategic targets . . . Can the three of you [Fred, Wilma, & the Lieutenant] be ready to present a comprehensive battle plan in my office tomorrow at 18hundred hours?” C: “Aye aye sir!”, Fred saluted.

At 18-hundred hours, we formulated the battle plan

 An audiological evaluation to learn more about the hearing loss (“ reconnaissance mission”);

 Putting aside monies to purchase hearing aids (“weaponry”) and batteries (“ammunition”);  Taking speech reading classes (“combat training”);  Taking an introductory sign class (“more combat training”);  Negotiating communication rules (“code of conduct”).

Example 2: Sue

Audiologist

The Eternal Eclipse

Pt “My HL is like a shadow, like when the moon eclipses the sun. It’s an eclipse that leaves me in the dark and cold. It’s an eternal eclipse because it’s not temporary like others. It’s huge, very heavy and very dark. An eternal eclipse.”

Example 2: Sue

MH: “What does the eclipse shadow get you to think, to feel? Sue: “I feel cold, lonely, sad, away from people, and worthless”. MH: “What relationships does the shadow mostly affect?” Sue: “It shuts me out from my grandchildren cuz I can’t understand what they’re saying. Same with my boss at work and I’m afraid of losing my job. It makes me feel hopeless, that’s there’s nothing I can do. It cuts me off from everybody!”

MH: “What do you envision for your life if the shadow doesn’t go away?” Sue remained silent, slumped in her chair and shook her head. “It darkens everything.”

Example 2: Sue 3. Eliciting Sue’s sentiments about the effects of the eternal eclipse shadow MH: “Do you like, do you approve of what the shadow takes away from your life?” Sue: “What do you think, doc,” Sue retorted. MH: “You’ve told me you don’t like it at all, that it makes you very depressed and lonely, but I want to make sure I don’t make assumptions.” Sue: “I hate it. It’s destroying any career aspirations I may have. It’s causing other people to think of me as a snob, since they think I’m ignoring them.” She continued for several minutes.

Example 2: Sue 4. Eliciting Sue’s justification for her sentiments about the effects of the eternal eclipse shadow MH: “Sue, would you say more about why the shadow is a problem for you? What values do you cherish that are being taken away by the shadow? Do you have a story you’d tell me that can shed some light on this?” Sue: “Connecting with people is important to me.

Finding potential benefits in adversity Crisis = Danger and Opportunity

Wisdom is from

Enlightenment & Endarkenment

e.g., 9 y/o Jason Jason

The HL

“The HL is a mean, green, strong, pointy-eared monster. . . I’m not sure what he wants. . . He wants me to hear worse.”

The tactics of the HL toward Jason

“It’s strong, real mean and will take over my ears.” “What would you like to do to it?”

“Walk away.” “Then what will happen?” “It’ll chase me.” “When the HL sees your HA, what do you think it’ll do?” “He (HL) gets mad at the HA, cuz it’s supposed to make me hear better. He’ll probably go bother someone else.”

“Ann’s” story