The 8th Nerve

The other day I caught a segment on NPR where someone shared his experiences with severe stuttering.  We didn’t turn on the radio until partway through however and I didn’t catch his name or the name of the segment.  He shared about his childhood experiences in school, where he went through several painful years of  being unable to connect with others or express himself to others.  Even though his handicap was different, I completely identified with his experience in so many ways.

I think he was in his late teens or early 20s (I’m not sure) when he tried a new intensive treatment approach that worked.  His stuttering went away, even though he has to always focus especially hard while speaking.  He believed everything would change after this.  He could be who he wanted to be, be the way he had always wanted to be with others.

I wish I could quote directly what he said at this point but I don’t remember it verbatim.  He said that it was not what he expected.  Essentially he had been so shaped by his early experiences that he still felt like the outsider, the boy with the stutter, regardless of his new ability to speak.   This hit me as a fundamentally true insight and suddenly I was made conscious of an underlying belief I’ve always had.  If there was a miracle operation or new technology that could actually restore hearing (or if I became fluent in ASL and joined others who use ASL),  I believed I would automatically have the ability and comfort level to freely join in conversations and express myself, not to mention feel an overall new level of confidence and contentment.

I had never considered that, even if I could easily hear and overhear others or communicate in general without extra effort,   something would still get in the way.  For better or worse, I am profoundly shaped by growing up with hearing loss that resulted in experiences where I frequently felt left out and inadequate as a person.

This makes me think of how powerful those childhood and adolescent experiences really are.  In fact, so many of us spend our adulthood trying to recover or compensate.  We create the appearances we want, we strive for the degrees and career successes that we want to define us. We do this to the point where how we appear to others is very different from how we still feel on the inside.  A great example is the woman with a perfect body who still feels like the overweight girl she was in junior high and so she obsessively diets, exercises,  etc and no one can understand why she’s so preoccupied with it.

Inside, many of us still feel like the lost child, the outsider, the child made deeply insecure by critical parents or traumatized by a dysfunctional family or a host of other potential factors that defined our experience when we were growing up.     Even if there is no one experience we could identify as the culprit, many of us have an internal critic that undermines us.

Essentially what this man on NPR proved is that at a certain point even fixing the original problem or source isn’t going to change one’s internal experience.  Instead we have to change those ingrained beliefs and thought processes that developed during the most formative years of our lives.  No matter how much we focus on outside appearances and props, we may fool others or be temporarily gratified but we would continue to go through life feeling all too easily threatened by certain triggers, overly focused on appearance and/or awfully anxious in general. Internal work must be done for us to truly feel at peace.

I suppose it is important to not only change our thoughts and beliefs but also recognize that WE are not our thoughts.  Or our job or our hairdo or our kids.  Our thoughts and beliefs are ingrained internal chatter that we can step back from and observe and transcend.  The more we practice, the better we will get.  Each moment- right now this very second!- is an opportunity to do it.

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Oct 15th 2009Hearing loss & Introspection

In his book, Dreams from my Father, Barack Obama writes about identity and finding his way as a young man who was half white and half black.   I could never go as far as to say that I could remotely know what it is like to be biracial in America, but I do feel like there are some parallels to the experience of being not hearing, not Deaf.  The experience of being in between, where one is not completely at home in either identity or culture.

Obama’s experience is grounded in appearance, and the assumptions, attitudes and expectations that are created because of how he looks.  In that sense, my experience is more invisible.  It is created in social spheres, and the invisible ways that hearing loss creates personal anxiety, isolation and disconnect which may typically get confused with my personality, if it is noticed at all.  Both experiences, however, even with many different outer layers of experience, ultimately result in a grappling with self-expression and anger at being confined, unable to freely express or be one’s self.

Obama writes about getting a sense, just for a moment, of what it is like to be free of confinement while in a marketplace in Africa:

...all of this while a steady procession of black faces passed before your eyes, the round faces of babies and the chipped, worn faces of the old; beautiful faces that made me understand the transformation that Asante and other black Americans claimed to have undergone after their first visit to Africa.  For a span of weeks or months, you could experience the freedom that comes from not feeling watched, the freedom of believing that your hair grows as it’s supposed to grow.. You could see a man talking to himself as just plain crazy, or read about the criminal on the front page of the daily paper and ponder the corruption of the human heart, without having to think about whether the criminal or lunatic said something about your own fate.  Here the world was black, and so you were just you; you could discover all those things that were unique to your life without living a lie or committing betrayal.

How tempting, I thought, to fly away with this moment intact.  But of course that wasn’t possible…  The moment slipped away. [pp 311]

I identified with his yearning to have and to keep that moment.  In my situation, however, how would I find such a moment?  I would have to study American Sign Language for several years to the point where I could freely use and comprehend without a second thought, then find a group of people who use sign language, then perhaps I will have that amazing moment where my energy is freed up for spontaneous self-expression and full involvement in all aspects of socializing.

I try to imagine a moment no longer invested in exerting the extra effort and energy to follow conversation threads, fill in gaps, and counter the anxiety often at the base of it all- the self-critical inner dialogue that tells me I must hear everything if I try as hard as I can, avoid awkward embarrassing moments as much as I can and I must find ways to join in based on the snippets of conversation that I may nor may not have obtained.  When I don’t succeed the way I want to, all I can think is how boringquietuncomfortable and left out I was, once again stuck in an experience that was not me, but was terribly me all the same.

I know much of this is self-driven and based on a lifetime of painful experiences that self-perpetuate and automatically set me on a certain track of ingrained thoughts and feelings each time I encounter a new social situation.  The more comfortable and open and forgiving I become with my hearing loss, the easier these situations will be.

In that moment meant for me though, I imagine I would be fundamentally relaxed, at a level taken for granted by the majority hearing population.  I would be confident that I would understand everything everyone says at any point in time regardless of background noise or accents or facial hair or lighting or lips that barely move when one speaks.   I would miss nothing.  I would entertain, I would freely join in and reach out to others.  My receptivity would induce others to reach out to me.  Comfort level and confidence would be automatic, and I would be free.

But it would just be a moment.

Obama, Barack.  Dreams from My Father: A Story of Race and Inheritance. Three Rivers Press; New York.  1995.

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May 28th 2009Hearing loss

The weather this March has been amazing!  Usually March tends to be blustery and slushy and gross, but this time there are sunny, warm days.  I’m still a bit skeptical, Vermont spring likes to fake you out a few times before it is really here.

So I have been trying to think of what to write about other than the five inch human in my abdomen.  I’ll go with what has been bugging me lately.  I was really bothered the other day by the fact that a friend lied to us.  Not even about anything significant, just stupid, avoidance-type lies.  I recognize that I shouldn’t take it personally because he lies about stupid little stuff all the time. The thing that irks me the most is the fact that I KNEW he was lying but I just kept nodding and smiling and keeping up the social niceties. Really, the question that bothers me is WHY?

I feel like lies (all those silly white ones and big ones too) and pretense make up way too much of the fabric of social interaction.  People pretend, they wear masks, they cover up, they say things they don’t mean, they act all chummy with people they don’t even like.  People misunderstand things and make assumptions and misinterpret things others say and do, but no one directly confronts it.  No one dares to be honest and real.  They avoid confrontation and spare feelings.

People worry about sparing the feelings of others, but what drives them even more is sparing feelings altogether.  Anything other than social chatter and joking around is too threatening.  Not to say that anything is wrong with social chatter and joking around, I absolutely love it.  But then there’s the hypocrisy and the avoidance and the lies that seem to be required to maintain it.

This baffles and wounds me in ways that are hard to explain.  Maybe the exclusion that comes with hearing loss gives me a different angle on all of this, due to watching from sidelines. I spent too many years watching and wanting more than anything to be a part of it.  When I began to become part of it more (once no longer confined by the roar of hallways and cafeterias), I discovered the difference was very baffling and painful.  When it comes to socializing, appearance and reality are not the same.

I love to get down to the roots of perceptions and assumptions and reactions, making sense of where they came from and why.  Comparing and realizing the origins of misunderstandings and hurt feelings.  Insight, healing and reconciliation.  Not this pretense and distance “everything is great!” b.s.  Yet, more often than not, I go along with the surface stuff.  I play along and keep the confusion and intuitions to myself.  If I want things to be more real, I should initiate it more.

Steve and I have a couple friends that we’ve actually started doing this with, it has been really cool and a fascinating process.  Even though we have all expressed our intention to do this, almost as an experiment of sorts, it is amazing what a hard habit it is to break.  The social niceties and the pretense.  Keeping internal reactions, confusion and surges of annoyance to one’s self.  Rationalizing and explaining away thoughts and feelings in one’s head without even checking with the other person.

With these friends we tend to go back and analyze what happened and share our reactions and compare perspectives (and it is incredible how often it leads to dramatic realizations about one’s blind spots, past trauma, negative or outdated beliefs, among other things).  We’re still trying to get to a point where we can do it right in the moment.  Where we can experience our feeling in the moment (sometimes that’s a tough one right there), then say directly  “Wait, what did you mean when you said that?”  and explain how we experienced it.  In this process, no one tries to cover up feelings, ignore them, state platitudes or make jokes so that it goes away.  In those moments, everyone can truly express and truly hear each other.

When this happen,  angry outbursts and emergence of hurt or negative feelings that are so feared and avoided in the regular social get togethers do not occur.  Instead there are revelations and genuine closeness, safety and trust.  There is deeper understanding and my perpetual state of turmoil in regular social situations goes away.  This is the way friendships should be.

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Mar 17th 2009Everyday life & Friends & Hearing loss & Introspection

As someone who had internalized hearing culture and values growing up, I was pretty definite about what was a compliment (”I couldn’t tell you had a hearing loss”) and what felt insulting (I now feel ashamed to say that once upon a time, calling me ‘deaf’ or asking me if I used sign language felt insulting.) Now I feel uprooted, in a limbo of sorts. What is oppressive? What should I be proud of? What is politically correct? What isn’t?

The other day, someone who oversees my position at work (in a marginal way, I don’t see or meet with him regularly) noticed my hearing aids for the first time. He asked about them (interestingly, as soon as he started asking about my hearing loss, he took a step backwards and lowered his voice) and I answered his questions (while taking a step forward and straining to understand.) He said he used to work with the Deaf at a school for many years, then stated “I could tell something was different about your voice, and I thought you had some hearing loss.” He is the second person I’ve ever met who said that my voice sounded different.

Whenever I am caught off guard, I respond with a smile, protecting the other person’s feelings rather than my own. My immediate inner reaction, however, is to feel indignant and defensive. But I have no idea how to respond and properly show that to someone. This time I thought about it again and thought maybe I should consider it a compliment of sorts! I am NOT hearing so why should I expect to come across as 100% hearing when I am not? I should take pride in the fact that my voice is different! Right?

I told Steve about it and he was pissed. He felt it was rude and we joked about how it would come across if it was said about any other handicap or condition. “You’re blind? Oh, I could tell because you have a cane and bump into things.” “You’re fat? Oh, I could tell because I saw you eat a huge buffet.” “You’re crippled? Oh, I could tell because you have a wheelchair.”

Today I was in the living room. I heard Steve in the kitchen groan and say “Oh no!” A couple seconds later, two Mormon types were at the door. It was too late for me to hide, I had to answer the door because they could see me in the living room. One woman immediately started signing, “you’re deaf?” Taken by surprise, I responded automatically, verbally “I’m hearing impaired.” Then in the back of my mind, I remember that the deaf community considers ‘hearing impaired’ as a politically incorrect term. Wasn’t I going to start saying that I was deaf anyway? Clearly it is not a word that comes to me easily even now.

Now we’re all confused. What does it mean if I’m hearing impaired? They don’t know. I don’t really know. The woman plunges on, tentatively using signs and then eventually signing less and talking more. She looks increasingly uncomfortable. I try to make them feel better with smiles, even though I think religious people who go door to door trying to convert people are insane.

Apparently, someone told the Mormons I had hearing loss and recommended me as someone to go to their services that will be in ASL on a certain date. I politely took their pamphlets and they left after that. Then I thought about how weird the whole thing was and should I take offense? I had been named and tracked down to my home purely based on my hearing loss. On the other hand, perhaps it was considerate to inform me of an event in the community that had accommodations and would have benefited from if I was fluent in ASL. Oh, and also if I was an insane religious person.

Either way. The confusion is a part of a cultural lens and identity shift and it is interesting to see how it changes my experience.

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Mar 16th 2008Hearing loss

This is the weirdest, most perplexing topic I’ve ever read about.  Ever. I had no idea this existed.

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Mar 7th 2008Hearing loss

“Many theorists have observed that members of ethnic and cultural minority groups, including deaf and hard of hearing persons, adjust to cultural oppression in similar ways that profoundly influence their identity development.” (p26). Sue and Sue’s (2003a) five stage model of Identity Development is cited:

1. conformity
2. dissonance
3. resistance and immersion
4. introspection
5. integrative awareness.

Until I read Alone in the Mainstream by Gina Oliva, I was very much still in conformity (”ignorance about and denial of cultural differences”). Intellectually, I reflected on my hearing loss quite a bit- but deep down I believed I was hearing and minimized my experience. I believed that I was performing well enough to pass. Having someone say “I didn’t even know you had a hearing loss, I had to be told” and other similar comments was considered a compliment.

Durity et al, 2006, write “upon entering school, hard of hearing children may initially recognize that they are different than their hearing peers but may be praised for their ability to appear “hearing” (Harvey, 2003). As a result, these children may see their hearing loss as an unacceptable part of themselves that must be hidden. These children can frequently feel that they do not fully fit within their hearing school or social settings. They find themselves trying to function in both worlds. The hearing world praises them for not appearing to have a disability, while the Deaf world rejects them for not being sufficiently deaf. (p28)

By adolescence, hard of hearing youth may not have a peer group with which to identify, and they often feel alienated from any group. While communication may be relatively easy with hearing persons in one-to-one situations, it is typically more difficult if not impossible with groups of hearing peers. Similarly, the HOH adolescent will not find it easy to engage with deaf peers because she or he does not share a common language and tends to not want to identify with a group seen to be more obviously “disabled.” It is not unusual for HOH adolescents to feel anger and rage about their hearing loss and to project this anger onto hearing peers and family. (p28)

If, deep down, one does not experience themselves as deaf because they have no context and no reference point for it, one comes to believe there must be other reasons for inability to express one’s self freely and such social isolation. I internalized this in many ways. It is eye opening to read:

“many deaf children experience trauma due to communicative isolation. Evidence for this can be drawn from the clinical experience of Harvey (1996), who observes that his adult deaf clients report childhood-based post-trauma responses triggered by more recent communication situations. Following a particularly difficult communicative interaction, deaf clients may report a number of common trauma responses identified in the Diagnostic and Statistical Manual IV. During communication situations with hearing people in adulthood, deaf individuals will re-experience:

-the feelings of isolation and being misunderstood they had as children
-thoughts of being socially isolated or actually withdrawing from contact with hearing persons in order to avoid stimuli associated with the trauma of communicative isolation.
-hyperarousal and hypervigilance as they become aware of the inadequacy of their communication, resulting in reactions that may be overly assertive or resigned and passive.” (p32)

Redefining this as trauma really helps me to understand the swift, kicked in the stomach pain I experience whenever I feel left out or excluded and the rapid resignation and withdrawal that I go into when it happens. I try to remind myself of how minor that particular situation was or not to take it personally, but regardless I am flooded, stricken, my stomach churning. Often, addressing the current situation would not be helpful because it is so out of proportion. I am re-experiencing old scenarios or I am hypervigilant, easily and painfully triggered by ordinary socialization among hearing people.

All of these quotes are very significant to me, although I struggle to tie it all together in one coherent entry. I know that I have shifted from conformity to dissonance (the discovery of oppression). I am beginning to realize in my heart that I am deaf (though I have yet to say those words out loud in any form of disclosure). At least deafness as it is defined in audiology as “severe hearing loss” and “inability to hear conversation without hearing aids.”

I once fervently believed that some day, in the right situation with the right people, my inexplicable personality paralysis, the repeated situations of exclusion or being “too quiet” would fall away permanently. Now I am beginning to realize that this will never happen, because I am deaf in a hearing world. I will be most “myself” on a 1:1 basis or in small groups or in writing, but I will not be liberated like I once believed.

I used to have a buffer that protected me from being fully aware of how much I miss out on, how much I am pretending, and the unbelievable amount of energy I am putting into “passing” as hearing. This buffer is breaking down before new awareness of oppression, of unrealistic expectations I have internalized in a hearing culture.

Then I begin to wonder. WHY am I working so hard? Why am I hiding and pretending and owning such an unrealistic burden? Why am I here? I begin to catch glimpses of hope for other scenarios where I do not have to work so hard, freeing up boundless, anxiety-free energy for self-expression. Then just as quickly, I am discouraged by not knowing fluent ASL, by knowing that this culture would not consider me a part of it either. I feel overwhelmed and stuck in dissonance.

The next step is resistance and immersion- where one becomes immersed within the minority community and rejects larger society. Is that realistic for me? I must do something, I can’t stay stuck in dissonance forever. I guess I wish I could just skip this step go straight to comfortable biculturalism. The fear is of how much I might have to give up of the known world. How much would have to change?

National Child Traumatic Stress Network (2006). White paper on addressing the trauma treatment needs of children who are deaf or hard of hearing and the hearing children of deaf parents. Revised. Los Angeles, Calif., and Durham, NC: National Child Traumatic Stress Network, 2006, www.NCTSN.org.

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Feb 16th 2008Hearing loss

20- Fell in love with my future husband. Went across the ocean.

21- Turned 21 in Scotland. Traveled Europe.

22- Graduated college. Moved to Vermont.

23- Got engaged. Started graduate school.

24- Bought a condo. Got married.

25- Started this blog. Went into therapy.  Ran a marathon.

26- Started my internship. Got up at 4 am every day.

27- Bought a house.

28- Finished graduate school. Got a dog.

29- Ended therapy. Got the job I wanted doing therapy.

Lately my mind has been entertaining possibilities for the future in ways that I have never dared to fully consider before. A couple days ago I was walking Lucky and began to ponder possibilities for ways to realize “my calling.” At that moment, to my utter astonishment, a large gray owl swooped in front of us. The owl landed on a branch a few yards away and turned its head and watched us. I have never before seen an owl in nature, let alone my neighborhood.

Hello thirties.

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Feb 6th 2008Everyday life & Hearing loss

I just have three.

-When people express surprise that I heard something. How did YOU hear that? You HEARD that? You heard me?? Yes. I hear nearly all sounds (with hearing aids in). I hear people’s voices. Understanding what they are saying is another matter altogether. Sometimes I understand the garble and sometimes I don’t.

-People who can never let themselves (AND directly or indirectly, me and everyone around them) ever forget that I have a hearing loss. Admittedly, this is rare. Most people forget or they just incorporate it into a general picture of me as a person. But there are some people who see my hearing loss FIRST, or just mostly my hearing loss. They are always accommodating, always worrying, always prepping themselves or others in advance, trying to talk and be just right. I believe their conscious motivations are usually good and that they are really trying to be helpful.  Unconsciously, however, they belabor my loss as an inferiority, a weakness that is important to keep in the forefront of everyone’s awareness. Their unconscious motivations are another matter and I don’t trust it for a second.

-People who start nearly yelling or use the “kindergarten teacher voice” if I ask them to repeat themselves again. It makes all the blood in my body drain away in mortification. This one hasn’t happened in a long time.

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Dec 14th 2007Hearing loss & Peeves

A couple weeks ago I met with Gina Oliva, the author of Alone in the Mainstream, for dinner. Her book was the catalyst for my much-needed shift, a shift that occurred on intellectual, physical, and emotional levels (also known as “the fetal position on the bathroom floor”). I had begun my shift from a self-concept of a hearing person who kept having deeply painful, inexplicable experiences to that of a nearly deaf person whose experiences now made perfect sense.

As I continue to process the impact of this book, I realize it has likely become part of the reason the number of entries have dramatically declined on this blog. For the past four years (actually, more technically since I was 12) I was driven by the question of “Why? Why can’t I be myself? What IS IT?” This question was the driving force behind blogging, a medium where I didn’t need to hear to express myself. I wanted to figure it out. Intellectually I had many of the answers, but in my heart I did not know it yet.

I believed if I tried hard enough, I would have a hearing person’s experience. I believed I was OWED a hearing person’s experience. I believed someday, in the right time with the right people, I would HAVE a hearing experience. Otherwise known as “being able to be and express myself” in social situations- just like everyone else I knew. With these beliefs so firmly a part of me, the recurring patterns that happened in every social experience I encountered became inexplicable, torturous and full of injustice.

Inevitably it was either:
- I am a silent outside observer, stuck and unable to speak or join in.
or
- I make a friend. Then a third (or more) person(s) joins in and start talking. I drop out of the conversation like a boulder, no longer able to participate like I want to.
- Then, I watch helplessly as the friend and newcomer seem to, in a matter of minutes, become much closer to each other than they ever will to me. Their easy access to communication rapidly creates social experiences and bonds that will surely surpass and replace me.
- Helplessness, resentment, jealousy, despair creates even greater distance from the hard-won friend.
- Nobody seems to notice.

Not to say that this was reality, but it was definitely my perception and my reality. Since I didn’t believe that it is an inevitable side effect of hearing loss, I took it personally. I didn’t understand the experience and I didn’t have the words. Anger and resentment became misdirected. I wasn’t even in touch with how much I was pretending, how much I was mimicking the body language and facial expressions of others to appear like I was actually following the conversation.

With acceptance- I will NEVER have a hearing person’s experience- comes words. Now I have choices. I can make disclaimers. I can say outright that I have a dichotomous life. I may appear a certain way in most social situations, but it is not who I really am. Get to know me one on one, or you won’t know me at all. I AM NOT QUIET.

More than once I have heard that it is actually “easier” to be completely deaf than it is to be hard of hearing. With deafness comes a culture whose language gives you complete 100% ease of communication and socialization without strain or stress or getting left out. During dinner, Gina encouraged me to try the ASL language camps or the Phd Psychology program at Gallaudet. Similarly, a week earlier a colleague tells me about the astonishing lack of services for those with hearing loss in Vermont. There are no therapists who know sign language and certainly none who truly know what it is like to not hear in a hearing world.

I begin to see where my life is headed.

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Oct 31st 2007Hearing loss

(I forgot to close the battery compartment on the middle and last aids but whatever)

The hearing aid on the left is the analog behind the ear. I wore this kind from age 2 to age 23. This type of aid amplified all sound to the same level. Everything was just… loud. Just about every situation that was not face to face in a quiet room was a struggle.

The aid in the middle is one of the first generation digital aids. These aids could be plugged into a computer and programmed with the results of my audiogram. In a sense, the aids were custom made for my specific hearing loss. Plus, this aid had a switch specifically for situations with background noise, like a party or restaurant. When I put it on the switch, the aids turned the direction forward and reduced the sounds behind it. Instead of 360 sound, I got 180 sound. The aids were also able to pick up certain unnecessary, non-verbal sounds and mute them, like the drone of the car or a fan.

All of this was a huge help. I was able to follow conversations in environments where I never could before. I wore these for six years. Hearing aids are like a car, after about six years they start to break down and there is no telling how expensive it will be or how long it will take to fix. The technology is amazingly consistent though. I’ve never had to send these away to get fixed. They worked every single day of my life without fail.

The aid on the right I just got today! Of course, health insurance did not cover the cost whatsoever which is fucking appalling. I still have to read the booklet that came with it, but based on what the audiologist told me this thing has a mind of its own. There are no buttons or switches. The aids are programmed by the computer based on my audiogram and constantly working to adapt to the environment and have specific settings for the phone, background noise, and music. The aids sense and switch modes automatically.

Things sound different. I still have to try them out in a variety of situations. It is a big mental and physical adjustment, but it’s exciting too.

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May 7th 2007Hearing loss