It's a Good Thing

I didn't start this blog because I thought I'd gather a lot of readers. It was mostly a way for me to cope with my sudden hearing loss and find my way in this almost deaf life I've found myself in. Today is the 6th anniversary of that dreadful day canyoubelieveit? Some friends have read my posts from time to time and left kind and supportive comments here and on my Facebook page. Occasionally a stranger makes a comment that lets me know that it is read at times beyond my little place in this world.

Recently, such a person contacted me to let me know that she herself has had hearing loss. She is a teacher and will begin teaching this year. Understandably, she is nervous about what to anticipate as she begins this step in her own almost deaf life. Finding someone who has walked that path before her, she wanted advice on things she could do to make the transition easier and less stressful.

Honestly, it's going to give her a lot of stress, I know. It's not easy. And she will find herself in many situations that she couldn't possibly anticipate. And she will have to find her way. Like I did. Like I still do today.

The thing is, hearing loss is tough. And many of the things one encounters day to day cannot be anticipated until they happen and you find yourself side-stepping, shuffling, fumbling, and adapting. And you do so because you really don't have any other choice if you want to continue living in this world. A sense of humor helps. So does honesty -- and a bit of frankness. If you're having trouble hearing or understanding, you have to speak up and let people know. Or you'll find yourself nodding and smiling that doofus smile. You have to be your own advocate.

I'm better about that now than I used to be. I still get a lot of "never mind" and "it's not that important" and those dismissals still hurt my feelings. But I confess that I've ignored people on occasion and blamed it on my hearing loss. No one is a saint.

I've committed to a long term sub position for several weeks. I'm a little nervous about returning to the classroom. And this one is an open classroom, so the fear of extraneous environmental noise is giving me a little anxiety. But I've learned the fear in the anticipation is usually greater than the reality. So I'll enter this assignment prepared to side-step, shuffle, fumble, and adapt as I have before. I've become resilient that way.

And it's a good thing.

Life

This world is an amazing place. No matter how sorrowful the living may become, life can be found pretty much everywhere we look. One only has to look. It's there. In the cracks of the sidewalk. Buried in the soil. Nesting in a tree. Carried in a womb. The sunrise. A tide. Large and minute. Life pervades. Permeating the darkness and grief with aspiration. Light. And peace.

It's a boy. A son. A grandson. The present. The future. News of hope and anticipation of new life. Parents' pride. Grandparents' joy. A family's progeny.

Life and death. Death, then life. It's a miraculous circle. 

Death

My husband and I made the difficult decision to have our German Shepherd euthanized yesterday. Though we felt a great amount of turmoil about doing it, we knew in our hearts that it was the best thing for him. He had been diagnosed with degenerative myelopathy last October, an insidious disease that slowly left his hind quarters paralyzed. While his mind was alert, his body had failed. And as the paralysis gripped him, we knew the decision to have him humanely euthanized loomed every day. In his final days, he relied on us to help lift his back and help him move from place to place. We could see his frustration when he wanted to play, but chose to lay instead. It had become too hard.

Having a beloved pet euthanized is traumatic for its humans. We personify our feelings of grief onto them. Our vet was kind and gentle in those last minutes, and Bear passed peacefully in our arms as if going to sleep. The hurt is deep and our love for him carries us through the days that follow.

I also lost my father five days ago. He had lived and suffered the effects of heart disease and failing health for much of my adult life. I watched him wither from vitality to weakness. Unlike our boy Bear, Dad's failing health took its toll on him for decades. We lived in the knowledge that one day the medical technology and medications would not be enough, and he would succumb to death. That time came in the form of hospice care and daily caregiving from my sister. He wanted to die at home with his wife and children surrounding him, and we honored his request by keeping our phones near and going each time we were called. The last time I saw him alive, I sang a special hymn in his ear, assuring him that all is well and the peace of the Holy Spirit is attending our souls. It was one of the few times I'd sung since losing my hearing. He died peacefully in his sleep a few days later.

A parent's death follows the natural order we anticipate. Grief is magnified when we see our parents' fear. But the sweetness of our memories balances the loss we feel. Our faith in God assures us that death is only the end of our time on Earth, and we will live again with those who've passed. The hurt is quiet, and we are calmed. He walks with Jesus.

I have noticed that death often visits us in clusters, as if it helps to grieve that way, too. But this I know: God is good. And in this time I will hold those I love and those I've lost near to my heart and mind.

#MillionEar Challenge

Hearing is something that most people take for granted. Humans are quite noisy. And much of the noise we've created can cause permanent damage to our ears and our hearing. According to the World Health Organization, 1.1 billion young people aged 12-35 are at risk for hearing loss due to recreational exposure to loud sounds. Blasting sounds into our ears for even a short amount of time can potentially lead to noise-induced hearing loss, the fastest growing cause of hearing loss and deafness. Rock musicians  and athletes are coming forward with news of their own hearing loss, and even deafness, caused by the volume of their own music and sports arenas, extolling the dangers of exposure to loud sounds. And once the damage is done, it is permanent. According to the WHO, hearing loss is one of the greatest health threats of our time. If left untreated, hearing loss can lead to mental illness, dementia, and other health problems.

Everywhere we go, we are exposed to sound, much of it at deafening levels. Jet engines. Motorcycles. Sirens. Traffic noise. Radio. TV. Video games. Restaurant chatter (and music). Concerts. Sporting Events. Movies. Ear buds. Headphones. Lawn mowers. Leaf blowers. School assemblies. Pep rallies. Trains. Subways, industrial work places..... And the time spent hearing these things before we damage our ears is surprisingly short. This video shows how much time exposure is allowable before hearing loss can occur with some of these everyday sounds. 

https://www.facebook.com/Cochlear/videos/10160180737795005/ 

My sudden sensorineural hearing loss is idiopathic, possibly caused by a virus or genetics. I will never know for sure. But after my hearing loss, my husband decided to have his own hearing checked and found that he is one of those billions whose hearing was affected by exposure to loud sound. Repeated exposure to jet engine noise at his workplace (even with ear plugs) has left him with tinnitus and moderate hearing loss in the middle decibel range.

On May 1, Better Speech and Hearing Month kicks off with “See Sound Differently" campaign. Please join me by taking the #MillionEar Challenge to raise awareness of the dangers of environmental sound and learn to "See Sound Differently". By sharing the news on social media, you will be helping to fund research by the Hearing Health Foundation that helps millions of ears every year.

Learn more about this year’s campaign: https://bit.ly/2KeZ8nF.

While and Work

This afternoon, I donned a hat and went outside to weed my garden beds. A much younger me had put in a too-big-for-me-now garden bed at the back side of the swimming pool. Weeding each spring is a monumental task.

On a normal year, I'd weed like a maniac. My goal was to get it done as fast as I could so I could get to other tasks that also needed done. But this year, I'm retired. And I'm learning that things that once were urgent are not so anymore. I can weed today and tomorrow and next week if I choose.

I took up my hand rake and garden gloves and trash bag and sat on the back of the retaining wall. The sun had warmed the blocks comfortably enough that I could have sat there all day just to warm my bum. I raked and dug and pulled the weeds that had grown nearly knee high after a week of rains. I'd learned long ago that the best time to weed is a few days after rains had loosened the soil, but the sun had dried it just enough to keep it from being muddy. Today, the soil was perfect. Damp and cool and easy to turn.

As I worked the soil gently in my fingers, kneading old mulch and dried leaves deep into the bed where nutrients of old can nurture new plants, my mind became engrossed in the wonders of our Earth -- the simple sights and gentle sounds of nature that soothe my soul. The robins twittering in the massive oak trees above me. The starlings drinking from the remnants of rain puddles in the pool cover. The katydid disturbed by my hand chittering as it flew to find new shelter in a shrub. The ants scurrying to hide their uncovered eggs. A lone earthworm reburied. The wind in the leaves. The sun on my skin. The dirt on my hands. And shirt. I could relish this task this year. And find joy in the things I see and the things I can hear because of my hearing instruments.

I'm not even close to being done. There's much left to finish, my older self sighs, knowing there's more to treasure in this calmer life I am making for myself.

I can work. I can while. The decision is mine.

Checkups and Ice Cream and Stuff

It's not that I've been neglecting this blog, but oftentimes life just plugs along in an uneventful litany of days and weeks and months. You sleep. You rise. You eat. You wash the laundry. You pet the dog. Notoriously boring stuff to blog about.

Then you visit your otologist for your yearly checkup.

Living with hearing loss, and the potential of future losses, the annual audiogram and doctor visit is the reminder of how easily something you have can be suddenly lost. Again.

"So, tell me how you're doing?" he begins.

"I'm good," I reply. "How 'bout that audiogram?"

"It's stable," he says. I already knew that. My audiologist already told me so. Then he goes on about missing the Meniere's conference this year as he checks my ears.

I inject that the coil on my CI has been giving me headaches and that the coil spacer the audiologist gave me has only made it slightly better. He checks my scalp for bumps and sores. He checks my mandibular joint for TMJ, and taps on the occipital nerve for soreness. Finding none, he tells me I should turn the coil magnet out as far as it will go.

"I've done that already," I tell him. He turns it anyway. Then he tells me a story about how watching my salt intake will reduce my risk of losing more hearing in my better ear and quotes some kind of research he learned about at the Meniere's conference last year. I think he's deflecting.

"I bought a cabin in Colorado and plan to move in a year or so. I'm looking for a CI clinic there," I tell him. He asks where and tells me I should go to a clinic in Denver where Cochlear has their headquarters. It's too far, so he recommends a CI doctor a few hours closer.

"You are doing really well with your CI," he says, inspecting my audiogram carefully. "One of my best successes."

"I complain a lot about the quality of the sound," I say, "but I know I'm really successful with it."

"I want to see you again in 6 months," he says.

"Not a year this time?" I ask.

"I want to see if turning the magnet out helps the headache," he says. I remind him that I've already tried that. "You could try a Tylenol," he advises.

Then I ask for a copy of my audiogram and leave.

I inspect my new audiogram and compare it with a past one from 4 years ago, after my sudden hearing loss episodes stabilized. I've saved photos of each report in my phone. I find that most of the levels are indeed stable, only moving down by 10dB in most of the frequencies, ranging from mild loss in the low frequencies to severe loss in the mid to high frequencies. What I didn't expect was the change in the presentation level of the word test. The previous audiogram presented words at 60dB. I scored 100% word recognition on the new audiogram but the volume now presented at 85dB. An indication that though my pure tones are somewhat stable, I now need much more volume to understand words.

It is the first time I have seen my CI results printed on the record sheet. My tones test was straight across at 30 dB, with the words "near full CI access" written across the grid. My words test was 88% at a presentation level of 65dB. I remember missing one word completely when I thought my audi said, "n'glif" and just shook my head. I don't know why missing words still embarrasses me. Understanding words without context is hard. I can clearly see from this audiogram how I can hear better with my CI than my other ear when unaided.

These visits always leave me a little depressed. This one was no different. Hearing loss really sucks.

But I heard a mother tell her young son at the appointment desk how proud she was of him for playing the games so well with the audiologist and she asked him if he wanted to get an ice cream on the way home. Yes. Ice cream. I would treat myself, too.

It was a cup of low-fat chocolate peanut butter cup yogurt with brownie sprinkles. And it made me feel a lot better emotionally. But my head still hurts.

Don't Read the Comments

Social media. Gaaaahhhhh.

I say it all the time: "Don't read the comments. Don't read the comments. Don't read the comments."

Then what do I do? I read the comments.

I also tell myself to ignore posts I know are click bait and move on. "Don't comment. Don't comment. Don't comment."

Then what do I do? I make a comment.

I'm bad like that. (You are, too. Admit it.)

Social media can be fun and amazing. And awfully aggravating. The ignorance displayed and shared in well-meaning or not-so-well-mearning comments is incredible.

Take one of those well-meaning social media groups where people with cochlear implants can ask questions and hear about other's experiences. I've learned a lot about my CI from them.

And then -- there are the people chiming in with their opinions, half-knowledge, or bits of "I heard..." or "I read..." and exhorting them as fact. There's usually one or two overlooked comments advising people to call their audi, but more often than no,t there are bunches of comments offering all kinds of absolute advice. And then there's you --knowing that your doctors and/or audiologists have completely advised you MUCH differently. Don't comment. Don't comment... DON'T COMMENT.

But you do. And your notifications blow up.

I've asked my audiologists about some of the posts and comments on the page. They chuckle most of the time and advise me to call them if I need help. They have doctorates, after all, and decades of experience treating patients with cochlear implants.

The convenience of seeking help online seems to be replacing our willingness to ask the ones who are educated to know how to help us -- our medical experts.

The fact is that having a cochlear implant doesn't make one a medical expert on cochlear implants. And one cochlear implant experience may be completely different from another. There's a fine line between sharing our experience and touting our own medical expertise. We should be careful not to cross it. Telling another recipient that their symptoms and/or problems can or cannot be caused by their implant may prevent them from seeking the medical help from the experts that can resolve their problems, anxiety, or needs.

It's probably time for me to leave that group.