Fatigue, Fear and COPING!

Hearing Loss and Fatigue

I go to bed most nights with nothing left. It takes so much energy to participate in conversations all day, that I’m often asleep within minutes. I have learned to actually schedule a full 8 hours of sleep each night. If I’m feeling particularly fatigued because of “extra” busy-ness… I even try to get 9 or 10 hours of sleep!

There are days that I remove my cochlear implant early… sometimes as early as 5 or 6 PM. I always let my family know that “I’m going deaf”, so that they will know I can’t hear them talking from another room. These days that I “go deaf” early, allow me to unwind from the mental and emotional pressures of “listening” all day. Sometimes I need this extra time in order to get a good night’s sleep. Sometimes I need these “no CI” times in order to keep from killing someone! Some days, I just need the quiet time in order to think.

Background noise isn’t “background” when you are deaf with an implant. I haven’t yet learned to “tune things out”, and wonder if I ever will. It has taken so much energy and effort to learn to “listen”, I’m not sure I can get my brain to learn to “not hear” when I have my cochlear implant on my head!

Listening and communicating takes effort. When you are late-deafened, listening is not a passive activity. The concentration it takes to understand and comprehend are not the same as someone with normal hearing. Certainly, I have re-learned how to do things like… have a conversation in a busy restaurant, talk to a family member while walking along side of them instead of staring at their face, etc.

However, I still have to stop everything and fully concentrate when talking on the phone. I have to turn my cochlear implant off to pray. (You wouldn’t believe the amount of distractions that come through as noise when trying to pray!) If I’m in the BACK of the van with my assistance dog, Chloe, I cannot hear my husband in the driver’s seat. I have to ask him to turn the secondary mirror to where I can see his face. (If my son is driving… the one who still has a Learner’s permit… NONE of us talk!)

If I’m alone in the van, I can listen to the radio as long as it is “talk radio”, or music that I already knew and have a memory of how the tune goes. However, I cannot have any kind of music playing if I’m trying to talk to someone else. It takes a lot of energy to “hear”.

Hearing Loss and Fear

Even though I am “hearing again”, I need to “fight fear” on a daily basis. The first thing I do in the morning after I run Chloe outside to “hurry up” and start my coffee, is to put on my cochlear implant. (I guess that actually means it’s the third thing I do in the morning…) I have been activated for 3 years now. To some I am a “veteran” of the Nucleus Freedom as I am one of the first to be implanted with it in April of 2005. However, even today… right before the magnet takes hold and I “hear”… there is a moment’s panic. There is an invading fear that for some reason it will not work. I’ve never put it on and not been able to hear… and yet, I am almost paralyzed with the fear it will not!

I’ve often wondered if I had opted to not have surgery, to NOT be implanted with a CI… had I chosen to remain deaf and rely solely on reading lips, writing notes, and signing to those who could… if I had chosen to remain deaf, would I fear NOT HEARING? But I made a choice… I chose to be implanted with a cochlear implant. Everyone I know and love are oral communicators. They “hear”. I chose the implant to stay connected to THEM. I chose to do the rehab, and do all that was required to learn to “hear again” through this amazing technology. With that choice, there are fears. I think all of us fear a “device failure”, or our processor falling off into the garbage disposal while leaning over the sink! (grin)

I fear a breakdown in communication with someone I don’t know very well. The look in the eyes of someone who realizes you misunderstood their question or comment is scary… that FEAR is contagious. I fear my family’s frustration in communicating with me on “bad days”, and they choose to stop trying.

I fear who my children may date, fall in love with and eventually marry. I’ll be their mother-in-law, and I’m not easy to talk too. One must learn how to best communicate with me. No gum chewing, no beards, no mumbling… no saying, “never mind it wasn’t important”. All of these things cause me to throw things, and I have a great aim. (Thankfully my daughter’s boyfriend is very understanding. So far he has learned to duck! Just kidding…)

My fears keep me from things I long to do. Our church does a “Respite” once a quarter for parents in our area who have children with special needs. For 4 hours, they reserve a gym and large center in order to “baby-sit” the kids so that the parents can go and do whatever they want. It’s a madhouse. Those who work the Respite are never the same… it’s exhausting, exciting, and life-changing volunteer work. Although I’ve been asked to help, I would never do so. I could never accept the responsibility and livelihood of a precious kid who might need to depend on my being able to hear. The fear of causing someone else harm due to my NOT hearing is almost debilitating if I allow myself to dwell on it. As it is, I avoid things like Respite with a stubborn determination.

Hearing Loss and Coping

My hearing loss has grown me, but growing usually is accompanied by “growing pains”. Growing isn’t easy.

I’ve learned to insist that my students follow up with every question, every explanation, and every conversation with an email. I teach one class after another on Thursdays. When I get home, I am so fatigued and “wiped”, I hardly know who I am. Many of them have learned the hard way! If they don’t follow through with an email, chances are I simply will not remember we even had a conversation. I likely receive more emails than any other teacher at Chieftain Institute. It’s not because I am well-liked and popular – grin! My students have learned that “this” is how I communicate the best. They are great at following through and communicating with me.

I’ve learned to allow myself to “grieve” once in awhile. Trying to be brave all the time is not easy. I learned that it makes more sense to allow myself “a good cry” occasionally… to be SAD about being deaf as an adult. I always feel better afterwards, and I think it’s therapeutic. I suppose being married to a psychologist has it’s advantages, too.

I’ve learned to anticipate challenges and problems when going into a new situation. I plan, I pray, and I do my best to figure out the best way to handle “hearing” at a meeting, dinner, or appointment. I’ve learned to ask for advice, and I have people in my life who are glad to give it. (Grin!)

I have learned to have cochlear implant batteries in my bedroom, my pocketbook, Chloe’s bag, and my van. I have them on my desk, and in the “fanny pack” that I take walks with when exercising Chloe. I have learned to order batteries in bulk to save money, and try very hard to not ever run out of batteries or “dry bricks” for my Dry ‘N Store. I schedule time to clean and replace microphone covers for my processor, and I’m still mapped at Johns Hopkins at least once a year.

I wear cochlear implant bling. Heck! I practically glow in the dark! I have learned that making my “invisible disability” very visible HELPS ME. I wear my hair up so that even the bright orange/red ear mold on the hearing aid in my “still deaf” ear shows! I have a hearing assistance dog whose vest and certification are clearly visible. (Although, this doesn’t always keep people from petting her in spite of the “Do Not Pet” instructions!) Having a canine partner assist me with my disability makes me very OBVIOUS to most people. Being visible about my disability helps me in the end.

When needed, I take my VIVID Acoustics clipboard (an assistive listening device) with me to meetings in which I know I’ll have trouble hearing. I’ll bring my pocket-talker along if I know I will need the extra help to hear in a noisy environment. I always charge my Sennheiser assistive listening device, so that when I want to listen to music through my computer, I can.

My life takes preparation. I’m willing to take that “extra effort”.

I have embraced my deafness with what I hope is a realistic acceptance of my own limitations. I am excited about successes and I grieve failures when communication breaks down. I have good days and bad days! I believe I am an enthusiastic advocate. I write about hearing loss, and I enjoy speaking to audiences of “my peers”. I correspond with others who are late-deafened because I want to make a difference. Others who “live what I live” have made a difference to ME, so I strive to make a difference TO THEM.

I spend a great deal of time educating myself about new technologies, coping mechanisms, and learn all I can about the experiences of others with hearing loss. I am a member of numerous hearing loss organizations, actively participate in hearing loss forums and message boards, and am supportive of many that I’m not a member of yet. (HLAA, ALDA, SWC, ATA, Hearing Loss Web, bhNews, HOH-LD News, CIHear, Meniere’s, and many more!)

I have been involved in national awareness endeavors like the Walk4Hearing, (this link shows a short video clip prior to the 2007 walk…) and am excited about participating this year with a team.

Denise Portis
©2008 Hearing Loss Diary

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One thought on “Fatigue, Fear and COPING!

  1. just wanted to thank you for sharing exactly what i fell….i have had a cochlear implant for 11 years…and was born hearing so good to know somebody out there knows exactly what i go through

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