For What I’m Worth
In day-to-day life you do what it takes, put one foot in front of the other. We understand each other with empathy and not sympathy; it is this empathy that is seldom talked about. The dark side to deafness/hard of hearing (HOH). There are wounds that go deeper than the depths of faulty nerves hiding deep in our ear canals. We rightly focus on being positively proactive, developing coping skills, finding a circle of support, seeking advice from competent professionals and keeping up to date on the latest technology, but the pain is there, pain I try to hide from myself by ducking behind an optimist’s denial, pain I want to shield my children from. If we acknowledge the negative then we can move through it, help ourselves and each other. You get rid of the monster in the closet by turning on the light. Our hearing loss may not be physically painful but it injures the psyche. It sometimes hurts who we are as people.
As our hearing gets more tenuous, our skin must grow thicker. Even in 2009, insensitivity and ignorance are everyday obstacles for the most part. When I had to give up the telephone and become dependent on texting, my heart broke daily, hurt over friends and family who could not overcome their own discomfort and learn how to communicate with me. The excuses stung – “Texting takes too much time,” “I hate having to always repeat myself,” “It feels awkward,” “I feel self-conscious with sign language.” What I heard was, “You are not worth a little extra time,” “You are not worth the effort to think of a different word that would be easier to lip-read,” “Talking to you is not worth my own awkwardness and discomfort.” Trying to order pizza and getting hung up on would leave me feeling easily discarded.
I have gained such an understanding and profound sense of respect for what it is to be Deaf/HOH. I am a culturally hearing person who can no longer hear. I was told once “you still have your eye sight, learn sign language and continue with your texting” , “it’s almost like the real thing anyway; It’s not a big deal really” . “You’re not missing a whole lot”; “thicken that skin girl”! I remember thinking to myself that very second “what an insensitive, heartless, callous thing to say”! This hearing thing is not like losing my favorite pair of earrings or a boyfriend in high school. ARGH! Does anyone get it?
I wish to clarify the misconception some may believe that sign and text are equivalent to speech and hearing — be careful. Yes, a very main purpose of sound is communication. But it doesn’t stop there, any more than the purpose for sight stops at communication. There is beauty and art that is the best part of seeing and hearing. Not being able to enjoy the rich, complicated, soul-stirring chords produced when an orchestra causes the air to vibrate at so many different Hertz at the same time and ears pick that up (in other words, plays music) it would be the same thing as a once seeing person would no longer be able to see that perfect shade of blue the sky turns at sunset, or the heavens on a clear, black night, or whatever your favorite image is. Now, imagine your image being described to you, your favorite images. It’s right there in front of you, you can touch it but you can’t see it. You have to go by your imagination or rely on someone else to describe it for you. When I heard certain passages of music, even for the thousandth time, it produced an involuntary response of pleasure in me. I would get goose bumps. I get the same thing when I look at sunsets. Had I been born deaf and wouldn’t know what I was missing, then that would be that and I wouldn’t be here talking to you about this today. What appears as true to me is that sight and hearing are no replacements for one another. They are both priceless in their own way. Yes, we can live without either or even both of them. But how much does either or both of them add to a life when they are present? That intimacy my friend, you can’t know unless one or both are taken away. Each sense is irreplaceable in its own unique way.
Before we go further, I would like to shed light on the types of variations of HOH. The term HOH I find somewhat perplexing because it confuses the “hearing” world and “cold” deaf that “oh, your just hard of hearing”, “wear your hearing aids and life is normal”. This is true depending on the severity of that particular person’s HOH.
For the hard of hearing the degree of hearing loss refers to the severity of the loss. The degree of hearing loss is determined by measuring hearing threshold. Hearing threshold refers to the levels in decibels (dB) at which a signal is just barely heard. A mild hearing loss is characterized as loss at 26-40 dB. Mild hearing loss may result in difficulty hearing soft voices, speakers at a distance, or understanding conversation in noisy environments. A moderate hearing loss is characterized as loss at 41-55 dB and moderate to severe at 56-70 dB. In this range, conversation even in quiet environments can be difficult and speech may need to be loud. A severe hearing loss is characterized as loss at 71-90 dB. At this level, hearing is difficult in all situations. An individual with profound hearing loss, loss at 91+ dB, may not hear even loud speech or sounds. In this instance, hearing would not be used as a primary method for processing information and communicating (House Ear Institute, 2008).
My loss is profound at 105 dB. In a nutshell; when the hearing aid battery fails, I am Deaf. When I shower, bathe, or swim, I am Deaf. When I am in bed ready to sleep, I am Deaf. When I play contact sports, I am Deaf. However, because I do have noise that my brain registers I am medically considered HOH whether or not my brain registers what it is hearing. Go figure!
My diagnosis is profound Sensorineural hearing loss bilateral; resulting from inner ear or auditory nerve dysfunction. Often, the cause cannot be determined. It is typically irreversible and permanent. It reduces the intensity of sound and for me it is a lack of clarity even when sounds, particularly speech, are loud enough. With that said, I still wear my hearing aids not so much for my surrounding sounds anymore, but so that I may be able to continue to somewhat hear my own voice. My hope is that I keep my own ability of speech longer. This may sound selfish, but I want to hear what ever I can as long as I can whether or not I hear it the way it was intended to be heard. For right now, for today, what ever noise that pierces through my hearing aids will be a noise celebrated.
I have been asked quite often, “what’s it like going deaf after you have spent almost 40 years of hearing”? Thankfully, I didn’t just wake up one day deaf. It progressed slowly, the first that went was the background noise, it was pretty subtle because I remember one day saying hmmm? Do birds chirp anymore? Are the leaves making that rustling noise as the wind is blowing through them? You forget the noise your car engine makes, windshield wipers, kids voices shouting while playing in the distance, sounds you just become use to slowly fade. Eventually I began having a hard time understanding voices on the TV and telephone, to people in a busy room or vehicle because of radio or others talking in background. This was the hardest growing pangs for me because it began to rob me of my very social being. I didn’t fit into the deaf world because I had not learned enough sign language and didn’t fit into the hearing world because I couldn’t hear enough to carry on a conversation. I started avoiding the telephone; I found myself laughing at jokes I didn’t even hear or pretending I had heard a friends comment about something and didn’t ; to save myself from the humiliation of asking them to constantly repeat themselves I would leave it alone. Why? Because I most likely would still not hear it and it would save them the frustration. This proved to be more dangerous then just a nuisance; I realized at this point how a situation can go bad without proper communication. It took me sometime to realize if friends or co-workers wanted to continue to communicate via speech then they would have to deal with having to repeat them selves or write it down and even better learn ASL, I just could no longer allow myself to feel responsible for their discomfort or awkwardness. At this stage, the sounds I heard were as if I was submerged in 4 feet of water and everyone is above me talking while standing on pool side. During this season, lip-reading was still manageable with the hearing aids. This stage took the longest and was preparation for what still waited for me.
Finally my current stage, that water I was talking about, now it is as if I am in the far deep end under 6 feet of water and everyone is trying to talk to me from the parking lot meanwhile, many people next to me are jumping in and out of the pool yelling and making noise. I hear sounds and noise but they are muffled to the degree that they are very much distorted. I could tell you I hear a noise but cannot tell you what the sound was. Lip-reading is barely attainable unless it’s a quiet room with no other noise, the other person looking directly at me and I have my hearing aids on. With this stage came a lot of loneliness and I had many feelings of desertion from friends and co-workers. I find myself always observing things going on, People talking all the time, a lot of times it’s feeling of being an outsider among them even if it was not their intention. This stage I would say was my most bitter sweet stage and the most humbling. “It is what it is”; I cannot hold them accountable for my feelings anymore then they can hold me accountable for theirs. It was a rough road, a long road getting here, but “my how sweet it is that I’ve finally made it”. I have the hang of this ASL thing and most people associated with me are aware of my new me.
I called these stages, my grieving stages. This is because each stage there was a huge loss and with each loss came more change, more desertion or so I thought. Each stage became harder and harder. It was a process that overtime almost broke me, until a good friend helped me see how I was self destructing. I finally stopped and asked God what in the world do you want me to do with this? It wasn’t until I finally got out of my own way and allowed God to show me his way. I had made this going deaf thing so much harder then it had to be. Had I just had faith all the un-necessary heartache could have been avoided. This I know to be true; I wasn’t alone; I hadn’t been alone; not even for one second. Heart ache and fear is not what God wanted for me. It was this walk that brought me closer to God and had all of this grief and turmoil been simply for just this purpose, I would do it all over again.
I am grateful to have the opportunity to be a part of such a wonderful culture. I have come to see this event in my life as a gift. With this gift, I am learning a new language; with this new language comes another circle of friends and an opportunity in this inimitable way of life many others before me have lived and have lived it quite successfully. I can tell you today, 10 months later, I have grown into this new person with this new language while keeping a grasp on my own speech. Those friends that found themselves easily frustrated with me because it was too much work to talk with me have slowly faded to my past. I have accepted this as simply another season. While I am thankful I had their time as long as I did, I do still know I have their friendship even though it has settled to mere acquaintances. Today, I love my life. I have the stability of my family and closest friends that chose to stay with me and to grow with me. How much luckier can a girl get!
yes, being deaf or HOH is still similar to that swimming pool, however; with God beside me and leading me every step of the way, I can say “I have completed my grieving stages” and I have embraced this dis-(ABILITY) because it’s who I am, and because it’s For what I’m worth
