Coffee Sign

As I was running errands this morning, I stopped for a coffee at the local Quik Trip. Without even thinking about it, I signed "thank you" to the young man who made my skinny vanilla latte. To my surprise, he signed back. I've no idea what he signed, so I smiled my doofus smile and nodded, grabbed my coffee, and made a quick exit.

Coffee

Shortly after I got my cochlear implant, I took a beginning sign language class given by a friend of mine. Learning sign language isn't much different cognitively than learning any language. You have to use and practice it often or you'll forget. Having no one to practice with, I forgot much of the things I learned shortly after the class ended. I used the ASL alphabet in my classroom with my students, finger spelling sight words for spelling practice. I also used a few other signs with them to cut down the noise in my room -- notably the help, restroom, and thank you signs. Those I remember, but other words come slower -- if anyone is willing to wait while I attempt to communicate letter by letter.

I rarely see signing being used in public. Once at a restaurant and another time at the mall. And today by the young latte maker. My daughter is quick to elbow me when we are out together and point out signers when she sees them, as if I am a part of their secret club.

But I'm not much like them at all. We are both deaf, yes. But I don't know their language. And spelling all my words would be woefully tedious for both of us. 

My tradition is oral and hearing. I am a hearing person who cannot hear. I have a foot in both worlds.

I wonder how the young man came to sign. Did he learn it because a family member or friend is deaf? Or did he just want to learn it as a second language?

I'll never know because I nearly ran myself over exiting the place. Next time I'll be more prepared.

It's Just Not True

I have been asked to speak to a college class of student speech-language pathologists again this year. It has again set my mind thinking about what I can tell these future professionals who will most certainly be working with children and adults who have hearing aids and cochlear implants. I'd like to tell them that the CI is a miracle in hearing technology. I'd like to tell them that hearing with a CI is an amazing experience. But it's just not true.

Sometimes I've been asked by friends to talk to people who are considering implantation. People who want to talk to someone with a CI and ask questions of someone with real-life experience -- not just a hearing doctor or audiologist who's told them they need a CI. Even though implantation is becoming more common, it's still a relatively rare thing, and most people don't know anyone with one. Talking to someone who's gone through it is comforting. I remember how scary and frustrating it was for me. I don't mind doing that. It's always a little weird at first because I'm not like a lot of recipients who sing the praises of the cochlear implant. It just hasn't been as marvelous for me as it seems to be for others. But the people I've met have been appreciative of my candor.

My hard-of-hearing life has become mundanely routine. It begins each morning with me reaching for my hearing aid. I cannot hear well enough without it to function well, so after my eyeglasses, my hearing aid is the 2nd thing I don. But the CI processor often sits in the Zephyr dryer unless I need to go somewhere or hear well while I'm in the house. Like when the hearing hubs wants to have a conversation without me asking him to repeat himself repeatedly. The truth is that I really do hear better with both devices. But it's hardly comfortable, often causing the skin under the magnet to ache, and occasionally leading to headaches, so unless it's necessary for me to hear well, it sits in the dryer until I need it. On days that I do wear it all day, there is a moment each evening where I just can't stand it any longer and I have to take it off.

And all those accessories that go with it? They sit in a box, too. I occasionally charge the remote so I can change my volume if I'm going into an unknown hearing setting. Just in case. But it usually just sits in my purse until the charge runs out and I return it to it's storage box, too. When I use accessories, it's to stream the sound to my hearing aid, not my CI. I hear MUCH better with my hearing aid than my CI.

I'd like to say that after four years with my cochlear implant, that my hearing is so much better now. But I honestly can't say that the quality of sound I perceive is any better than when I first began. I've just gotten used to it. It's still as tinny and mechanical as it's ever been. I don't hold any false hopes that it will improve with listening practice because I've been listening for four years. I still struggle with comprehension. Closed captioning has become a necessity when I watch TV, even when I stream the sound to my hearing aid. Actors have terrible enunciation. They aren't the only ones either. It's difficult to understand a lot of people because of poor and/or lazy speaking habits that blur sounds and words. And there are no closed captions to read during live conversation! I still miss a lot. I have anxiety that if I lose my other ear, the CI won't be sufficient for me to hear or understand well at all.

Cochlear implants are often touted by hearing professionals and recipients as miracle devices full of wonder and awe. It's just not true. It will help you hear. But it will be limited by your own physiology and by it's technological parameters. The struggle is real. And it's continual. And it's exhausting.

This is what you should know.

I Didn't Forget

August 14 came and went again this year.

I didn't forget that it was the anniversary of my sudden hearing loss.

I didn't forget to make a blog post marking the day that thrust me into muffled silence.

I didn't forget the moment my life changed forever.

I didn't forget the audiogram that determined my level of sound perception in my damaged cochlea.

I didn't forget the doctor's words when he told me my hearing loss was profound. And permanent.

I didn't forget the feeling of panic as I drove home. Fearing the impact deafness would make on my life. The desperation. And the dread.

I didn't forget the confusion and frustration as I tried to come to grips with a life where I couldn't understand conversation, television, radio, or take a simple phone call.

I didn't forget the challenges of learning about speech bananas, audiograms, decibels, hearing aids, batteries, dome tips, volume, wind noise, static, reverberation, feedback, vibrating alarms, strobe notifications, FM assistive listening devices, euro adapters, amplification, closed captioning, hearing impaired settings, ADA, and ear wax. Or cochlear implants.

I didn't forget the missed conversations, the "whats?",  and the "never minds."

I didn't forget appointments for CTs and MRIs and balance tests and audiograms and evaluations.

I didn't forget the misunderstanding, impatience, and cruel words of coworkers and administrators - spoken behind my back, but revealed to me by true friends -- as I struggled to cope and adapt.

I didn't forget the friends and family who offered support and empathy -- who lent an ear, directed me to places for help, cried along with me as I grieved.

I didn't forget the doctors and audiologists who expertly and patiently eased me into hearing aids, assistive listening devices, and cochlear implant programs that help me make the best of an imperfect situation.

I didn't forget the ones who repeat their words over and over, make the effort to speak clearly when addressing me,  or clip my microphone to their shirt so that I am included in their conversations. And their lives.

I didn't forget the children whose hearing loss I noticed -- and helped. Likely more aware because of my own hearing loss.

I didn't forget the people I've friended who've experienced sudden hearing loss, as well, and the encouraging word I can now offer to them because I know what it's like.

I didn't forget the resilience that hearing loss would force upon me. From utter devastation to coping to surviving to encouraging. To living.

I didn't forget.

Time

Time.

It's a strange, abstract perception of our being. Both finite and infinite at the same time.

We mark our days by time. Life events. Successes. Failures. Embarrassments. Accomplishments. Our hopes.

Clocks. Calendars. Days, weeks, and minutes. Years. Our remembrances of time.

Current events remind us that we've learned little from our time here. History repeats itself. And wise elders are reminding us to mark this time; to closely pay attention so that our recollections may provide stories and insight for future generations. If they care to know. Or care to heed.

It's a regular handmaid's tale...

This week I am reminded that time affects many things. There's never quite enough of it to do what I've planned, but there's an incredible amount of it to waste.

I retired 67 days ago. 2.2 months. 9 1/2 weeks. 1608 hours. 96,480 minutes. And I've spent 30 minutes of that time ruminating the concept of time to write this blog.

I've been deaf for 5 years. I do not want to know how many months or minutes have passed since then.

Five years is fleeting for growing children and towering trees But it is a very long time to not hear.

Five Years is a Long Time

I answered a survey about hearing loss today. It was sent to my email inbox by a hearing loss association. I'm pretty sure it was in response to the bill proposed in Washington that will make over-the-counter hearing aids available to anyone who wants them -- those without a doctor's prescription, diagnosis, audiogram, or exam.

While I know there are a great many people in the world with undiagnosed hearing loss -- and many with diagnosed hearing loss who simply cannot afford a hearing aid -- who could benefit from the expected lower cost of over-the-counter hearing aids, I have mixed feelings as to whether this policy is a good idea or not. Selecting, wearing, and benefitting from a hearing aid is complex. Much different than purchasing reading glasses -- a simplistic analogy of the impetus behind the OTC hearing aid movement.

In the five years since I lost my hearing, I've learned a great deal about hearing loss and hearing aids. They can be really great. And they can be really awful, too. Working through an audiologist is surely more beneficial than walking into a Walgreens and selecting a factory pre-programmed hearing aid that may or may not fit comfortably, amplify sounds appropriately, or achieve desirable results.

Five years is a long time to learn about optimizing programs and settings, choosing generic canal tips or custom ear molds, selecting a receiver-in-the-ear vs. behind-the-ear model, consideration of T-coils and Bluetooth, finding and using compatible assistive listening devices, learning to care for and maintain your devices, seeking adjustments and reprogramming to meet ongoing hearing changes and needs...

Five years is a long time to learn that you get what you pay for. I've upgraded my hearing aids twice to improve the quality of hearing. My first "basic" pair was terrible, at best. Hardly worth using. I worry that these mass-produced hearing aids will be of such poor quality that people's experiences with them will discourage them from seeking audiological evaluations and more advanced devices when and if their hearing warrants it. And with the availability of these "cheaper" hearing aids, will insurance companies like mine discontinue coverage of more sophisticated devices necessary for those of us who have more profound hearing loss and send us to the corner drugstore for help, too?

Five years is a long time to work with an audiologist to maximize my hearing success through initial diagnosis, routine monitoring and adjustments, counseling, and guidance towards success. My audiologist can be credited with the majority of my success with my hearing devices. I am dependent on her expertise. I don't think a drugstore clerk could hold a candle to her.

It's far more complex than selecting a cute red or blue one to help you hear better. And like myself, I seriously doubt most people will have any idea about what hearing aids would be best for their unique hearing needs or how to use them properly without an exam and diagnosis.

It will be interesting to see how this pans out.

Thank You, Thank You, A Thousand Times Thank You

Some days, I go without my cochlear implant processor, especially on days when I'm staying around the house and there's no real need for me to hear anything. Days like today. It gives my skin a chance to rest from being pulled by the magnet and gives me a semblance of peace and quiet for a little while.

I'd planned on working in the house, cleaning and de-cluttering years of neglect (and a little bit of laziness) after exhausting days of teaching little ones. So the CI remained in the dry and store box this morning.

I thought of retrieving it for a quick run to the store to get more vinegar for the window cleaning solution, but decided it probably wasn't necessary for such a quick errand -- in and out. Get the vinegar and go. You know, just a few minutes in the store. And I had my hearing aid in, so I wasn't completely deaf.

What I failed to take into consideration was that this particular store was a Target. And there is no such thing as a quick run to Target. (You know I'm right!)

The first problem I encountered was being unable to locate the vinegar. Though I'd walked up the condiments aisle a couple of times, my eyes seemed locked at eye-level, and I didn't see the vinegar nestled on the bottom shelf. I had to ask a young man who was stocking shelves.

Now, I 'm only a fair lip reader, and after the second (maybe third), "Where?", the young man proceeded to walk me to the same aisle from whence I'd come and helped me find the vinegar. I politely thanked him for helping and he went back to work.

But I wasn't done yet. I decided to get a new microfiber cloth.

I headed to the automotive aisle and found the cloths among the car washing supplies. But as each cloth has a specific purpose, I had to read several labels to determine which one was a general purpose cloth for my purpose. I must have dallied in the aisle a little too long. I was greeted by not one or two, but THREE salespeople. I've no idea what they said, but I replied with a generic, "Thank you, I'm fine" to each one. I'm pretty certain that stupid "doofus smile" crossed my face at least once.

And since I was in the area, I browsed the towels. I was thinking of getting another hand towel for my powder room. I was greeted by a young lady restocking the aisle and just as another "Thank you" was rolling across my lips, I turned to see she was actually helping another customer. So I picked up my towel and hurried away before she could talk to me, too.

At the checkout, the young lady engaged me in some kind of conversation, smiling and pleasantly talking as she rang my items -- mostly looking away at the register. She may or may not have asked if I wanted to apply for a red card, as they always do. I decided against speaking and just smiled pleasantly back. I think I thanked her several times, too.

Then on my way out, of course, I had to have a Starbucks. I ordered my drink and could hear the cheerful barista talking as she prepared my frappuccino -- blender and all. I busied myself with counting enough quarters to pay for my drink. It seemed she didn't need a response from me, but I thanked her, anyway.

It seemed appropriate.

Today's excursion was a glaring reminder that no matter what I wish, my hearing aid alone is grossly inefficient. I need to have both of my hearing devices to navigate the hearing world successfully. And without embarrassment. One is not as good as both.

I am extremely fortunate to have a cochlear implant and my decision to be implanted was a good one. Together with my hearing aid, the CI helps me to live a relatively "normal" life. And I am reminded today to be grateful, even when I struggle. And that, friends, is worth a thousand "Thanks".

I'm Mad, too, Eddie!

Today I am straying from my deaf life and posting about a different concern.

Three weeks ago, I began to have significant chest pain and shortness of breath. It began suddenly in the night and continued to worsen the next morning. I didn't feel like it was a major concern and went to work the next day. However, by mid-morning, my breathing worsened and I began to feel faint and dizzy. Since both my primary care physician and my cardiologist offices were closed, I had no other option but to go to the ER where I was admitted for observation and tests.

Having a history of dysrhythmia and pulmonary embolism, I was given the standard course of tests -- x-ray, echogram, and stress test, all of which came back normal. It wasn't my heart. Yet the chest pain and shortness of breath continued. At the end of the 2nd day, I was conferring with the hospitalist's PA about my orders to follow up with my primary care physician.

"So, what should I do about the pain and breathlessness until then?" I asked.
"I can give you something for anxiety," she said.
"Why anxiety?" I asked. "Do you think this a panic attack or something?"
"Well, it can relieve your stress and make you feel better," she said.
"I'm stressed because I can't breathe, and you want to give me a pill for anxiety?"
"No. That's not what I'm saying. But maybe it will make you feel better," she went on.
"Because it will...?" I was leading...
"Let me talk to the doctor about what we should do," she said and left my room.

As I lay there in the bed, waiting for someone -- anyone -- to give me answers and relieve my symptoms, I tried to quell the anger that was rising in me. And I remembered.

A gastrointerologist once suggested I see a psychiatrist after I'd been vomiting for 35 days and he deemed there was nothing physically wrong with me. It must be in my head. My private doctor looked at my test results and found that my gallbladder was infected and full of sludge and stones. He overrode the GI's orders and sent a surgeon to my hospital room. Surgery was performed the next morning and I haven't vomited since. The delay in treatment, however, left me with a resulting hiatal hernia from the vomiting and subsequent gastrointestinal problems that will plague me for the rest of my life.

The ire. The gall. The incompetence. The insinuation. I am not a crazy, hysterical, hypochondriac woman. Sometimes I have pain. And when I seek medical attention for it, it's because it's real. It is not in my head.

Yep. You know what? My name is Bonnie, and I'm mad as hell.

I'm mad because too many doctors' go-to diagnosis for women is "anxiety". I'm mad because it's not just me. I'm mad because I hear the same story from other women. Often. I'm mad because we are not hysterical. We are not crazy. I'm mad because anxiety and hysterics still play into the medical treatment for women in this day and age. I'm mad because women deserve better than "I can give you a pill for anxiety."

Would this have happened to a man, I wonder?

"Sir, maybe you should take this pill for anxiety and calm down. This pain is in your head."

 I think not. This is the archaic misogyny that is still present in medical practice today. And that makes me mad, too, Eddie.

The conclusion to this drama is that I refused to be told that the pain was in my head. I continued to press my own doctor until I got an answer. Pleurisy and resulting costochondritis. He's now treating me for both the pleurisy and the arthritic pain in the joints connecting the rib cage to the sternum caused by the pleurisy. I thanked him for treating me with respect and dignity. For persisting until he found the correct cause of my pain. For not insinuating that I am just a hysterical woman.

I feel a little better now that I have a treatment plan for my symptoms. Symptoms that can be treated and relieved. Symptoms that are real.

But I'm still mad. Oh yeah. Is there a pill for that?