On January 4th, my nephew’s wife called to say my brother Bob was not eating and was declining. I hadn’t seen him since last June, and in December was told he could no longer participate in the phone conversations I had just had a month prior. I knew I needed to visit him. I remembered August of 2014, when my sister-in-law called, saying my brother Paul was riddled with cancer and was expected to die within the week. I waited three days, and while driving to Omaha to see him, my sister-in-law called again to say he had died. I regretted waiting. I wanted to avoid more regrets, so on January 6th, my husband and I made the two hundred mile one-way trip to see him. When I walked into his dining room, he saw me, lifted his shoulders in a happy shrug just like our mother, smiled and said, “Sister”. We hugged and spent time together, being joined by his son and daughter-in-law and another brother and his wife. His pastor even joined us, making an eighty-mile trip to do so. We had had as satisfying a visit as allowed by the narrow scope of topics with his dementia and the Parkinson’s limiting his speech.
The round trip was easy as the weather was mild, the roads were clear. It met my needs to talk with him, hug him, and once again to tell him I loved him.
On Friday, January 11th, I went to bed with the knowledge my brother Bob was not expected to live through the weekend. I informed my siblings through our private Facebook group and email. My urge to immediately drive the two hundred miles to his nursing home again, to hold his hand, was tempered by inclement winter weather. On Saturday at 3:30 am, I startled awake from a dream: I was following a leader through an outdoor amphitheater, with the goal of going to the woods beyond. The leader was already out, motioning me to join him when I reached the top of the seating and the sloping of a roof. As I started to pass through this narrow opening, I realized I was walking into a maze of spider webs. All kinds of sizes and types of spiders fell on me, with spider webs and spiders entangling in my long hair. I quickly backed up, looking for other openings, but they were too small. I awoke, without finding a passage.
After a few more restless hours of sleep, my nephew’s wife called to tell me Bob had died. And my dream made sense; my brother had moved on and I could not follow.
I made a list of my siblings, to not have to trust my memory to remember which of the seven I had called. I added his oldest son on the east coast and our cousin in Nebraska. I was attentive to the time zones they each resided in and called accordingly. To tell them our brother had died was difficult enough, but to tell my other brother that Bob died on his birthday and his granddaughter’s first birthday was a difficulty of its own. I actually found it wonderful to talk to each of my siblings, even for the occasion of delivering our sad news. I am not a regular phone call person and rely on Facebook and gatherings to communicate. After I had completed the list, I found I was exhausted. My adult children were sympathetic and assured me they would attend Bob’s funeral service. My son would travel east from Wyoming; my daughter lives in the same town as I do, but planned to travel later, so she could take less time off, and see her young children before she leaves them for two days.
The service was set for January 23rd, which left time for long-distance travel plans and returning to the regular tasks of life. I made lists to help me focus. I found myself inattentive, ending up with a broken fingernail, an unexplained scratch, and a blistered finger doing a task I had safely done for a decade. I remembered the time I slammed the trunk of the car on my finger, almost twenty years ago as I grappled with the news of my father’s terminal illness. I realized I needed to pay attention if I wanted no further injuries. Or car accidents. I have been involved in three car accidents, none of which were deemed as my fault. I was rear-ended twice in the months after grappling with the pain of divorce and the death of what I had hoped to be a marriage for life. The third car accident was after my mom died. Again, technically not my fault, but these happening in times of grief are notable.
On Monday, January 14th, a friend visited us, and I calmly told her the stories. She listened and shared her stories. I was fine. I joined my book club for breakfast the next morning and found myself interrupting, bringing any topic back to my brother’s passing. When I got in my car, the tears flowed. I texted some friends, who answered with compassionate wisdom. I had coffee with them on Friday, realizing I had once again monopolized the conversation, but they are close friends and wanting to be with me in my grief. I ran to Natural Grocers and discovered a massage therapist was giving free, 20-minute massages. I passed her by as I usually do, then realized this was a gift. I turned around and took her up on her gift. I explained I was grieving, may cry, and that I knew I was carrying grief in my body. In those sweet twenty minutes, she was able to put a dent in the boards usually referred to as shoulders. While massaging my back, I realized I was carrying old griefs as well as this recent grief. I knew I could let the old griefs go. She was as skilled of a listener as she was as a masseuse. I left somewhat lighter than I had come.
I knew I was improving when I could actually complete a couple of tasks on the list in the next days. I started a list of tasks to do after we returned from the funeral service, as the business of life continues on.
I consulted with my sisters about what they were wearing. I grieved that my oldest sister would not be attending. And I decided to continue a project of making sister bracelets for our sisters-in-law. I had made bracelets for my sisters last April, using our mother’s necklace as a base. It was therapeutic to focus on creating for my family while facing our loss. My daughter and I had manicures together; something we do for important occasions.
The day prior to the funeral, my husband and I set out. We drove west, starting with mist, which turned to rain, then freezing rain. When we turned north, the rain changed to blinding snow swirling around us. We wondered why we hadn’t left a day earlier and were relieved to arrive at the motel where we joining my extended family. During the storm, I tearfully told my daughter she should not start her drive that evening, meaning she would not be coming to gather with us. When the interstate closed due to ice and accidents, we both knew she would stay home. She is a great comfort to me, and I knew I would miss her presence.
The funeral was still an eighty-mile drive away from our motel, with the remnants of packed snow on the road continuing to slow our travel and keep us focused in the moment. The sun was shining and the weather predicted above-freezing temperatures.
The pastor gathered us prior to the funeral, reading scripture, telling us some stories, and giving us directions. When she asked if any of us wanted to share stories about our brother Bob, I drew a blank. Bob was twelve years older than me; our childhoods barely intersected. He left for college and only returned a few times a year after that. It didn’t seem the time to tell that when I was a young adult he insisted we no longer keep our childhood abuse a secret, to ensure the next generation did not experience abuse as well. That we became close as adults around this process and later sharing our journeys of recovery from alcoholism. Our talks were from the heart, about how we were living day to day. When our conversations were no longer mutual sharing, and his behavior became self-serving and weird, my interest in communicating with him was squelched. When I found out a couple of years later he had Parkinson’s and dementia, his behavior had a context. I then looked for opportunities to visit him at his assisted living facility. Every time I saw him, his functioning had changed, had declined. Since his diagnosis in 2011, I have been slowly losing our former connection. There were vestiges. We could still talk about the tools of recovery together and how we were using them today.
So no, I had no quick stories to tell. His grandsons were able to tell a couple of stories; ones I had not heard before. One of my brothers told the pastor we had time that evening to share more stories. The moment passed. My emptiness did not. During the funeral service, I find myself in tears. My son put his arm around me to comfort me. I leaned into him, appreciating his comforting. We drove back to the motel on sun-dried, clear roads, enjoying the rural scenery sparkling in the snow.
Back home, and a week later, I was preparing for a short stay of my son. As I converted my craft room back into his guest room, the sadness returned. Sam was going stay to briefly with us, bringing us his car and his cat to care for while he is gone for a year-long overseas assignment.
As we moved on to grocery shopping. I realized I was in an active grief space. I couldn’t face the analytical decisions of choosing produce. I tell my husband I will pick up the yogurt and the tahini; the easy tasks. As I held the quart of yogurt, I imagine I drop it and hear the sound as it hits the floor. The stunted sound of plastic making impact on a cement floor. I see the yogurt splatting, then oozing out. I consider letting go of the yogurt and actualizing this sight and sound. It seems like it would be a relief, that it might help break the tension of my sadness. I resist, knowing it is not really a reality I want right now. But I can’t locate the tahini. What I am locating is my new source of grief: I am now facing my son going overseas for six months, to a military base I am not allowed to visit. We will be able to communicate, but I won’t be able to be in the same space as him. It seems too soon to face this, with the recent passing of my brother. I also realize my son is not dying, and that I may be getting this all mixed together. I return to my husband, who has made all of the produce-purchasing decisions and ask for his help in finding the tahini. He takes me to the correct aisle. He also picks out some chocolate peanut clusters. I resist inhaling them all on the way home and eat one when we get home, remembering overeating does not assuage grief. I looked at the list of tasks I want to complete before Sam comes home and realize I am done with the list for the day. And grateful I still have tomorrow.
When Sam arrives, his nervous excitement about his new adventure helps me feel happy for him. We spend a day together with his sister and her family. The next day I drive him to the airport through winter mist at 4:30 am. I plan to walk in with him, to see him through the security process, but he chooses to tell me goodbye at the curb. Surprised we are parting, the tears flow. I gather myself for the still-winter-dark, overcast drive home, knowing I will be home before it’s without-a-sunrise daylight. Unexpectedly, I find myself relieved that his twelve months have now started. I had had eight months of anticipating this assignment. As it turned out, the anticipation was worse than the actual event. Similarly, I realize I had been dreading my brother’s death since I found out he had Parkinson’s and Dementia. Knowing both of these conditions could go on indefinitely, I now marveled my brother had been able to be released from them in less than a decade from his diagnosis. I find some momentary peace, knowing I will have more grief moments to experience. I take pictures of Sam’s cat, so I can send them to him. And know I will be ready to face my list of tasks tomorrow.
It actually took a while to have the experts settle on the type of storm we had. They initially said we had straight-line winds, and later said it was a wet microburst. Our neighbors quickly named it a microburst, and they were spot on.
What also seemed to take a while was getting the house repaired. I have no idea what is typical, as I hadn’t experienced working with a homeowners insurance claim of this proportion. The tree was removed in less than a week and the insurance adjuster cut us a check to pay the tree service while sitting in his truck. That’s a nice use of technology! I didn’t know our mortgage company would also be involved in the repair process, but it made sense since they own it as well. It just added another layer to get the house repaired.
But the house repair was a seven-months-long process. Fortunately, after the tree was removed we were able to return to live in it.
Although the restoration of the house took over half a year, we have an improved house! Some repairs we were needing to attend to were swept up in the restoration. The tree falling onto our house left ripples in most of our ceilings in our house. Some of our ceilings had decades of patching, but are now ripple and patch free. Walls were impacted as well, so they are repaired and have new paint. It’s quite the facelift inside! We now have a new roof, half of the house has new siding and guttering, and two badly needed new windows. I quickly named our tree “The Giving Tree”.
Prior to the tree falling, I would comment to Ken I wanted a truckload of mulch for our yard. I asked the company who removed our tree to give us some mulch from our tree, and they delivered! I wondered if we could find a place for all of this, but that was not a problem. It did take us several weeks to disperse it, but it was fun! A year later I am ready for more mulch, but not ready for another storm.
We both are now “jumpy” when we have storms with high winds. About an hour prior to the storm I had taken a walk. There was thunder in the distance while I was walking, and I was aware a rainstorm was predicted. I don’t take walks when there’s thunder within my hearing. The strength of a storm is no longer theoretical to me.
Ironically, when this storm was beginning last year, I said how much I enjoyed the wind. In minutes, the wind was blowing so fast the leaves were flying past our front window. That was when we decided to move away from the windows. It has taken a while to not go to a fight, fight or freeze kind of place when having high winds now.
This incident gave me the opportunity to take stock about where my security lies. When the tree was resting on our house, being inside of it felt risky, and unsure if it was safe to be inside the house. When the tree was removed and the insurance adjuster said our house was safe to stay in again, we didn’t stay in our bedroom right away. It had a nonfunctioning chimney for a long-ago wood stove that was cracked when the tree hit our house, with mortar falling out in places. The plaster ceiling around it just fell off. We discovered the chimney on the roof was totally loosened and was easily dismantled. Subsequently, we had no idea if the chimney was stable and didn’t want to find out while sleeping. After a month of no movement of the chimney and internal repairs not happening soon, we returned to our bedroom. (When repairs did happen, we requested they remove the chimney. Our bedroom is small, and this gave us more space. The masons did a wonderful job of preserving the bricks so we now have bricks to use for other projects.)
I realized I had assumed our house was my safe haven. I have preferred to live in homes with a basement to have a safe(r) place to go for a tornado. But I didn’t have a plan for a tree uprooting and landing on the house. It made safety feel like an illusion, which indeed it is. My feeling of security really rests within me and my version of God. Ken and I were unscathed and in fact, benefited from the demise of our tree. But the potential the tree could have landed on us was not lost on us. Our wonderment and gratitude were, and are, vast. Now, when I find myself worrying about the small stuff (it’s all small stuff, in the end) I remind myself about the tree, what a great outcome we had and where my trust truly lies.
The next day I got my hearing aids. I kept a journal for in my initial days of wearing hearing aids, which is following. I have worn them for ten weeks now, and am committed to continuing to wearing them. They have improved my interactions with other people immensely. I am not straining to hear now. I didn’t realize I was straining, but I was. They give me some ease. And have diminished the tinnitus. I am grateful. I am also getting closer to a place of accepting this permanent condition of tinnitus. The despair is greatly lessened.
Day 1: Krysta [Dr. Green, audiologist] fitted me for hearing aids this morning. She somehow calibrated them to my hearing loss. Looked pretty complicated to me; she rattled off stuff to her intern about how she set it. She showed me how to take care of it. She gave me a pack of batteries; evidently, I will need to change the batteries every 7-10 days. Kinda surprised how quickly the batteries run out. I need to remember to open the hearing aids every evening, so the batteries are not working. The hearing aid case is kinda cute.
So, my brain will now get signals my cochlea has lost. With the amplification from the hearing aids, I will hear things I haven’t heard for a while from my mild hearing loss and will hear things my brain has learned to screen. My brain will evidently learn to screen them again, but until my brain learns this, I will hear a lot.
She calibrated both the same, but I asked her to turn up my left ear. Now I am wondering if I was right.
So, my first reaction to the hearing aids working is that it sounded like there’s a microphone inside my head. Kinda weird. That was this morning; it still sounds like that this evening.
When I scratch my head above my ear, or move my hair away from my ear, it sounds like amplified sandpaper scraping. That’s a bit intense.
When I sniffed, it’s like I am in a tin building, with the feedback, echoey sound of tin. That’s a bit much too.
When I drove home from the appointment, I heard the turn signals in a clear, amplified way. I kinda like how crisp they sounded. I turned on a CD in the car and really enjoyed the music. I think I wasn’t hearing the treble very well. In recent years I found myself really tuning in to the bass line of songs, which I had not done previously. I wonder now if I did that because I had lost hearing the upper notes. I used to comment to Ken that the stereo wasn’t balanced. Now I think it was my hearing loss that was contributing to that perceived imbalance.
I started the day as a cicada day. That has varied, but now, in the evening, the cicadas are back. A couple of times I felt like my ears were itching and wanted to take the hearing aids out. But I got through it. I am motivated to wear them so my brain will quit sending these signals, giving me the ringing in my ears.
I asked Krysta if the tinnitus would return when I took the hearing aids off at night. She said that varies for people.
After I left the fitting appointment today, I teared up, thinking there may be hope of not hearing the ringing in my ears anymore. I felt very grateful Krysta is serving people in need like this. She’s a very intelligent person and could do anything she wanted. I am glad she wants to help people with their hearing issues.
But, I am tired from this very new experience. Hearing aids and still having the tinnitus sounds. Tomorrow the repair of our house begins. He’s starting in the attic and there is no place in the house I won’t hear it. I may have to leave. When Ken was moving the furniture in the attic tonight, it sounded very loud. Hard to tolerate sounding loud.
Ken observed I had improved mood today. That there is hope is encouraging, I’m thinking.
Day 2: It is amazing that I hear more clearly. It does feel like the inside of my head becomes a microphone. Just kinda weird.
Woke up with cicadas. I’ve had my hearing aids on for forty-five minutes and the cicadas are greatly diminished. Cool.
I don’t have any running around scheduled today, and am attending to business: writing out a bill, making phone calls, etc. I think it’s cus I am less tired with the cicadas being in the distance.
Took a walk in the wind today. I was concerned I would hear wind against a microphone effect, but not at all! What a relief.
Didn’t have to leave with construction sounds. That was a relief. The hearing aids definitely amplify the sound, but it isn’t grating.
Day 3: When I woke up this morning the cicadas were active! I was very motivated to get my contacts in so I could put on my hearing aids. (my regular glasses’ bows are too fat with my hearing aids) I have had them on for an hour and a half and they are starting to diminish, but still present. C’mon, brain!
It’s 12:30 pm and the cicadas have not subsided so far. Bummed.
When I drove my car this afternoon, I didn’t have heat or the CD on, and I heard creaks and groans I hadn’t heard before. Krysta said she had a client who told her he arrived to his appointment with a Rolls Royce and left with a jalopy.
Evening: I have been discouraged, teary today with the cicadas not diminished. I am exhausted, which I get on the days I am discouraged. The backs of my ears hurt, where the glasses and the hearing aids meet. Ken suggested that I’ve worn the hearing aids three days, and two of the three days have been less tinnitus. A good point. If it was good before, it can be good again. Today is hard.
8:30 pm: I just checked my left hearing aid; the battery case was not closed all of the way. I don’t know if it was that way all day, or when I took them out at the dentist’s office. But it gives me hope this was the reason I had more cicadas today. Ken was super relieved to hear it too. I was so touched by his investment in these hearing aids and his concern about my despair with living with the tinnitus. I just so want to not have to live the sound 24/7.
Day 4: Started reading the hearing aid manual today. There’s dots on the inside of the battery red for right, blue for left. Good! I thought there should be a system.
Put on my hearing aids right away, to make up for yesterday’s “brain training loss”. I can still hear the cicadas, but it’s way in the background. Turning into the ringing sound, which is less.
I was with Becca and Teddy today. I felt free to lay on the floor and wiggle around with Teddy. I took my glasses off, but the hearing aids were fine.
Becca asked me if I can now handle the sound of crunching chips. I forgot I had said that, on day 1, when we ate at the Jimmy John’s by IKEA. Yes, I can. However, I am still choosing to eat applesauce instead of an apple. Odd.
Today I am hearing an airy sound in my left ear. I had Krysta turn up the left one more than the right. I am questioning that decision.
Ken and I went to Menards, Natural Grocers, and Sprouts. I am not getting too much sound in the stores. Besides Jimmy Johns, I haven’t been to a noisy restaurant yet. Will see how that goes.
In thinking about hearing the turn signal, I realize it’s a more crisp sound. I formerly heard the turn signal, just not all of the tones. I like how the hearing aids crisp up what I’m hearing. This mild hearing loss is so fascinating. I had no idea I had lost any hearing. Once I adjust to them, I anticipate enjoying hearing conversations better. Makes for an improved quality of life.
Day 5, 11 am: I went to sleep and woke up with the cicadas today. I was motivated to put my hearing aids on this morning. The cicadas haven’t gone away, but they are definitely in the background.
My full prescription glasses have big bows, and I haven’t found a comfortable way to wear them and my hearing aids. So, to put my hearing aids on, I need to put my contacts on first. (I wear glasses with my contacts, to correct my farsightedness.) I am starting to feel like a bionic woman: I have all kinds of devices for daily living: glasses, contacts, retainer to keep my teeth straight (spent money and pain getting them straight; not gonna do that again!), hearing aids, and my four crowns are imminent to increase to six crowns.
I am telling my brain it doesn’t need to search for sounds when I am going to sleep. It hasn’t got the message yet…..
9 pm: Cicadas most of the day. Was helpful when Sue and Lisa were here, cuz I didn’t think about it. And it wasn’t quiet.
Day 6: So yea, I was disappointed about the cicadas yesterday. Then I took off my hearing aids and realized the hearing aids helped them not be so loud. Cus they were VERY present without the hearing aids. I can say with confidence the hearing aids are lessening the tinnitus sound. Cool.
I did take a Benadryl to get to sleep last night. Two nights ago my VivoFit3 said I got a little over 3 hours of deep sleep. I stayed in bed until 8:30 am today and got over 6 hours of deep sleep. It seems a good night’s sleep aids in my ability to tolerate the tinnitus.
I feel like I have made progress today in coming to terms with my hearing loss/tinnitus. I don’t feel like resisting so much, as just leaning into it and even playing with it. Kind of a relief.
Day 7: I didn’t take a Benadryl last night. Took a little bit to get to sleep, but I had a good night’s sleep: over 6 hours of deep sleep again. This is such a mental feat; if I can approach bedtime with a positive outlook about the tinnitus, I can get to sleep. When I feel defeated, despair, the tinnitus is all-consuming. Here’s hoping I can continue to have a positive outlook!
11:30 am: Hearing the tinnitus this morning, but it’s background. So struck by the clean, crisp sounds I am getting with the hearing aids. The sound quality is improved.
Last night we were babysitting Teddy and after he was in bed we were sitting in the quiet living room. I heard a chirping sound that I thought was an electronic sound, from the kitchen area. But it was the chirping of an actual bird at twilight. Such a crisp sound!
Day 8: I took a Benadryl last night. The cicada noise was present and I was worried I wouldn’t fall asleep easily. I think a bigger factor in getting asleep is not using electronics right before going to bed.
BUT, this morning I woke up to only the faint, high-pitched ringing. If this is all the sound I would have from tinnitus, I probably would not have sought help. I put my hearing aids on right away, in case the reason for this lessened sound IS the hearing aid use. Don’t know, but am eager to test this theory.
6:30 pm: The left hearing aid needed a new battery today. Just changed it. Looked at the manual to be sure. Easy peasy.
The tinnitus sound is minimal today. Such a relief.
Ate in a restaurant today. Couldn’t hear Lisa any better, but it didn’t catch unwanted noise. I am thinking my hearing aids are not my grandparents’ hearing aids!
AND, the right hearing aid battery now needs to be changed.
At knitting group tonight, I shared my tinnitus, hearing loss, hearing aid tale. And gave 3 of Krysta’s business cards to three people. Cus we all know someone who has tinnitus or may have a hearing loss.
It’s after 10 pm, and I am hearing ringing. Not a bad day though. Fairly encouraging.
Day 8: Woke up to faint cicadas. Now just have the faint ringing. I think the reduction in tinnitus may be due to the hearing aids. How to know?
I had lunch with Kathy yesterday at a small, not-busy grill. I found when I was listening to her, I was watching her mouth (to lip-read). I told myself I may not need to watch her mouth and looked at her eyes instead. I was right! I could hear her just fine!
While we were there, Kathie from knitting group was there with her husband, who has tinnitus. I love to show people my hearing aids, cus I have to make an effort to do so. Since I have long hair, it really covers them up. But even if I had short hair, I think they would not be very noticeable. He said he would make an appointment after they returned from their travels. If I can usher folks with tinnitus to help, I will do it!
Day 9: Woke up to active cicadas this morning. It’s almost noon, and they are still present, but in the background. I want to make the connection with tinnitus and sinus issues (I have a sinus headache this morning) but neither the audiologist nor the literature supports this.
We are having a lovely Spring day and I have a positive attitude today. I am realizing I was low energy with the advent of the tinnitus and the diagnosis. A bit depressed. And it happened in winter when I don’t get outside as much. Probably not linked. I probably would have been sad to get this life-long condition any time of the year. Just thinking. Glad my mood is picked up today! Yard work is happening this afternoon!
Day 10: Last night I took a Benadryl. I told myself it would help with the poison ivy spots I have on my arms. But I was mainly motivated to have it help me be drowsy enough to fall asleep with the cicada sounds. It does work. But I would rather fall asleep without that drug; feeling psychologically dependent.
At the end of the day yesterday, I was aware of the hearing aids in my ears. I think I am always aware; haven’t tuned that out yet. And when I’m tired, anything is harder to deal with.
Here’s something that is happening: when I wake up, in the middle of the night, in the morning, I don’t hear the tinnitus as the very first thing. It is not my first thought anymore. Progress!
I was out of sorts late morning, early afternoon. Ken and I ate lunch at a restaurant as Arnold, who is repairing our house, was turning on a compressor to work on a ceiling. Arnold suggested we leave, and I was all for it. The amplification with my hearing aids makes an inside noise like that a challenge for me.
I told Ken at lunch I could hear the cicadas over the din of the restaurant. He said he didn’t hear them…
I am realizing it’s harder to tolerate music playing while I am listening to someone talk. I hope I get over that.
Day 11: I put my hearing aids in (is that the correct preposition, term?) the latest in the morning I have yet; 10 am. I heard the cicadas in the night, but this morning it was just the ringing sound. I put them on/in, before we meditated, as I figure they help screen out the tinnitus. I think it helped. We hadn’t meditated for several days. When that happens, it sometimes takes me a little while to get in the meditation groove. So I did intentional breathing. Which also distracted me from the tinnitus.
I went to a small party tonight. I did fine with hearing and conversing. I think these hearing aids are helping!
Day 12: I heard cicadas all day. I am getting used to it; doesn’t super bother me. But, took a Benadryl, to help me sleep through the cicadas and the poison ivy.
I tried on tops today at Kohls. I am impressed by how well the hearing aids stay in place.
We went to a Pokemon Go! community event. I thought later I might have been the only one playing Pokemon Go! wearing hearing aids. I could be wrong. Can’t see them, so don’t know!
It’s official: Ken is tired of me saying, “Did you hear that?” I’m not.
Day 14: Didn’t write anything yesterday. I think it’s an indication I am getting used to these hearing aids.
This morning I tipped the battery out of my hearing aid before I closed the compartment. After getting on the floor, using a flashlight, I did not locate the battery. They are so little!
I took a Benadryl last night. I am telling myself I will use them while I have the poison ivy. I woke up at 3 a.m. and had trouble falling asleep again. But it wasn’t due to the tinnitus.
Day 15: Yesterday, all I had was the faint, high-pitched ringing. It’s easier for me to ignore. I did NOT take a Benadryl and fell asleep just fine. Today I have had cicadas all day. So discouraging. I have been off-kilter emotionally, but I don’t think the two things are related.
I made up a new term of one of my hearing-aid-wearing issues. I call it ear canal fatigue. I think my sensory issues come into play. I just need them out of my ears sometimes. But I haven’t allowed myself to do that, as I want the most brain training I can get.
Going to call Krysta tomorrow, with these questions:
Anything I can do about this ear canal fatigue?
How long do I need to wear them each day for brain training?
How long does brain training take? Am I making too much of brain training?
How far in my ear should I be placing the probes?
They stink! Any suggestions?
Is it okay to use earbuds and take my hearing aids off?
Day 16: Had cicadas all day again. Maybe not as loud. My ears just ached, so I took the hearing aids off a little after 8 pm. I wore them for 12 hours today.
Day 17: Had some tinnitus sounds this morning, but I have not had much, or any, cicadas. Such a relief!
Day 18: What can I say? Active cicada sounds all day. I don’t get this. I’ll be okay, but it’s hard when one day it’s so minimal, then back.
Day 19: Started the day with loud cicadas. At Women’s Group, Jane said tinnitus worsens with stress. Great. Well, I guess it’s a great time to be retired and have less stress.
Day 20: Travelling, flying with hearing aids for the first time!! Made it through security; didn’t need to take the hearing aids off.
When my ears popped, I had a moment of panic that it would affect my hearing aids. Not so much. Nothing affects those things!
Cicadas all day. Ugh.
Day 31: Last week I had times of only the high-pitched noise, which is so far in the background I don’t notice. I have been using Benadryl more times than not using it, and don’t care for my dependence on it. Yesterday was a high-pitched day, not a cicada day. I took the hearing aid off an hour or so before bedtime and the cicadas returned. (Or did they return because I was tired? I don’t know.) I was tired, like I-had-already-taken-a-Benadryl tired, so I decided to not take it. And I fell asleep through the cicada noise just fine.
I think I have a new phenom happening: I think the hearing loss was screening out sounds (I first wrote noises, cus my audio sensory issues take sounds and make them noises.) so my sensory issues were less. I have had times when music is on and someone is talking, and I will have to turn off the music to be able to concentrate.
Day 33: Yesterday was another cicada day, for sure. I hadn’t slept my usual 9 hours and worked at ACT testing. The tinnitus was relentless. I still got to sleep. I am able to tell myself I can get to sleep through this, and then I do. I feel like the anxiousness about having this condition is lessening.
April 30th: Saw Krysta today and asked my questions. She thought my right ear canal had some redness and looked irritated. Her solution is smaller earpieces. So far I think they are a great improvement. I don’t feel the urge to itch my ear. Which isn’t easy, by the way.
I asked her to recalibrate the left hearing aid, so now both hearing aids are the same. My initial reaction is that it is helping tone down the sensitivity to sounds.
She said she didn’t think using the hearing aids would make the tinnitus go away, but definitely lessen it. And that is what I am experiencing. So nice to have relief. I am motivated to wear my hearing aids all of the time, to reduce the tinnitus and now also, to hear people better.
I have quit taking Benadryl and am getting to sleep just fine. I hear the tinnitus sounds, and tell myself they will be less in the morning when I wear my hearing aids. And I go to sleep.
I realize now I have had to work hard to hear what people have to say. What a relief, to put some ease in having conversations!
Last July I pulled a back muscle and was taking muscle relaxants. I thought the constant sounds of cicadas in my head was just one funky side effect of that unpleasant medicine. Because the cicadas in my head left before the ones in nature made their annual entrance, I didn’t think more about it.
This January I laid around when I was coaxing a nondescript virus to go away. And heard the cicadas again. I concluded this happened when I was sick, or sedentary. I mentioned it to the doctor and she volunteered to refer me to an ENT. We threw the term “tinnitus” around. I declined the ENT referral, deciding the cicadas were a part of being sick and would fade away. The virus did its eventual exit, but the cicadas remained. They weren’t always present; they traded off with a ringing sound that was softer. I realized I probably had tinnitus and told my children about it. My daughter has a friend from high school who is an audiologist. She suggested I contact her for an ENT recommendation. I texted her and she recommended I see an audiologist first. I made an appointment with her.
Prior to the appointment, I allowed myself one look on that bain of medical folks’ existence, the World Wide Web. I chose the Mayo Clinic’s site to read up on tinnitus. Here’s the Mayo Clinic site.
I know several men who have tinnitus and all of them said there is no treatment for it. They said they learn to tune it out. I felt some despair because I knew it was a permanent condition. I also thought people got it who were around loud machinery, shot firearms, and/or went to loud concerts. I did none of those activities. At first, I couldn’t imagine living with this ever-present sound. I love the quiet; my favorite conditions for sleeping are pitch dark and no sound. When I was growing up on the farm, we didn’t have air conditioning so we slept with the windows open. I remember having trouble sleeping when the irrigation pump ran at night. I could sleep through intermittent or pitch-varying sounds, but a consistent sound was a challenge. When I was a teen I stayed at my aunt’s house for a couple of weeks so my cousin and I could catch the early morning bus together to do corn detasseling. There were four people in the house, in four separate bedrooms and they all played different radio stations while they slept. I struggled to fall asleep the entire time I was there.
I came to understand I probably have sensory integration issues, with auditory being an impacted sense. When I briefly owned a Harley, one of the first things I requested was to remove the unique Harley pipes because I couldn’t tolerate the noise. I knew it was sacrilege, but that patented, loud sound was wearing to me. I learned to wear ear plugs when I took longer motorcycle rides.
I find white noise distracting instead of soothing. When I am home alone, I rarely have the TV or any music playing. I love quiet space.
So, to face the potential of permanently having sound INSIDE MY OWN HEAD that I couldn’t regulate/control was a sad prospect for me. I have noticed when I am busy, I don’t notice it so much. When I am tired, it is more noticeable, and in general, I get irritated more easily. When I have an active cicadas-in-the-head all day, I tire faster. The days of the ringing sound are less challenging. Always, in the evening, when winding down and tiring, the sound is ever-present. Some nights I have difficulty getting to sleep.
One statement in the Mayo Clinic’s explanation of tinnitus is that its onset often happens at age 60 and up. I am just now 61 years old and was shocked that I was getting an age-related condition. It occurred to me I may continue to face age-related conditions. I know, I am sixty-one; and yes, this had occurred to me before. But it was theoretical; this is getting real. When I felt fearful I coached myself, that I could make it at that moment, and could make it until I had my appointment with the audiologist.
Ken went with me, which the audiologist welcomed, to get his input as well. The first part of the appointment was the interview. The audiologist was clear the ringing in my ears is tinnitus, but the intent was to find out why I have it. I said I had read it could be anything from wax build up to a brain tumor. She asked the appropriate questions to rule out a medical referral. She confirmed that I already have audiological issues of auditory sensory integration and trouble with persistent sounds. Both of these have technical names, which I promptly forgot. I said I had had a hearing test with the school district’s audiologist around ten years ago, as my daughter encouraged it. I thought she mumbled; she thought I had difficulty with my hearing. At that test, I found out I experience hearing loss with ambient sounds: sixty percent loss of hearing in one ear and forty percent in the other. At that time I realized I read lips to compensate for hearing in noisy conditions.
The next portion of the appointment was an ear exam. I was disappointed to find out I did not have wax build up, as that would have been such an easy fix! After that, an intern did the actual hearing tests. She was in another room, speaking to me through a microphone, while I wore hearing devices of some sort. She was behind a double paned, tinted window so I could see her, though not clearly. For the first test, I was to indicate hearing a tone by pressing a clicker. We were clicking right along, at fairly regular intervals, then I heard no tone. A little bit of time would pass and I would finally hear a faint sound again. I would click, and the intern would write something down. I found myself leaning toward the direction of the sound, as though that would help me hear it. When I couldn’t hear the tone, I could hear the cicadas in my head and felt sure that was the cause of missing those soft tones. I knew I was missing tones, and I became sad and teared up. Most of the sadness was the realization I was not acing this test. I am chagrined to admit this, but it was not because I was missing sounds, but because I take pride in performing well on tests. At the end of this test, the intern asked if I was doing okay, and I lied and said I was. I immediately thought of the students I had worked with for a couple of decades who struggle with test-taking. It wasn’t a case of not knowing the material, but attempting to demonstrate their knowledge in the method given would run into their learning disabilities. They knew they should be able to answer the questions, that their classmates could, and they couldn’t. Their own kind of hell that they had to face in their whole school experience. I have been a fairly good test-taker and am not used to struggling. That day, I got a small taste of what they showed up for all of the time.
The next test was the intern saying a word at a time, and me repeating it back. As the volume diminished, so did my ability to repeat the word back to her. It was an illuminating process. I found myself guessing at some of the words, and quipped, “This is a great example of how miscommunication happens.” or “Could you say the word in context?” I finally gave up when I couldn’t make an intelligent guess at the word. I realized quickly though, there have been a lot of times I have strained to hear a word, or sentence, for a while now. And that I have been working pretty hard to hear people speaking.
The audiologist explained their findings: I have a mild hearing loss. This news did not hit me too hard; it was actually a valid explanation of my experience I had just had with the testing, and in recent times, trying to hear all of the words in conversations. She did tell me I have every right to advocate for people to talk to me face to face and explain I have a mild hearing loss. I also have permission to ask people to turn down the volume of TV’s, etc in restaurants. If not for me, she asked me to do this for all of the people who struggle with hearing and other unseen conditions. My husband recalled a time I had already asked a restaurant to turn off a TV, so he didn’t think I needed much encouragement to advocate for myself. I agree, but it is useful to know why I have felt the need for this. Having a mild hearing loss is much better than that I am persnickety.
I was most interested in the audiologist’s recommendation for the tinnitus. She said something like this: the tinnitus is my ears’ attempts to hear as they are aware they are missing sounds. Or something like that. I will have to ask her again, because I was absorbing a fair amount of information and emotions at the time, and didn’t get it all. She believes hearing aids could actually help this type of tinnitus. I am getting fitted for them, and am too scared to hope they will really work.
I told my siblings my results, finding out one of my sisters and one brother-in-law have this condition as well. They have not been offered any treatment options.
In the meantime, I recognize I am going through the stages of grief, in living with this new condition. The day after seeing the audiologist, I had coffee with two former co-workers, now co-retirees. One was sharing about the next step in her cancer treatments. She has a type of cancer that is challenging to treat and she was going to have an appointment the next day to find out if a tumor was responding to treatment. I asked how she was feeling about it and she said: “It is what it is.” Whatever she found out, she would then do what was indicated. I hesitantly told my friends my new-to-me condition. I acknowledged it wasn’t a huge medical challenge and a lot of people have it. My friend said, “Yes, you still have your ear.” She is so right! I have every confidence I will get to that matter-of-fact acceptance, but I am not there yet. I am experiencing all of the other stages of grief, in varying ways and in varying degrees. Sadness and shock are my most prevalent places right now. A success is when I haven’t thought about it for a period of time.
I have told myself I will face this with grace and dignity. Then I remembered who I was. Ha! I am not grace-ful OR dignified! No, I am facing this a day at a time, feeling whatever I am feeling at the moment, finding bits of humor here and there, stumbling along looking for a new equilibrium. It ain’t always pretty, but I am certain I will land on my feet once again. In the meantime, look at me when you’re talking to me, and have patience with me if I ask you to repeat yourself.
I lost my mother’s wedding band. It was a Thursday night, and I was cleaning out my purse as I was preparing to attend an all-day conference on Friday when I realized I had lost it. The last time I had been aware of the ring was three weeks prior. That was the afternoon we had an unexpected mighty wind and rain storm. While sitting in the living room on that warm October day, we had a front-row view of the swirling rain, the leaves flying by, and our neighbor’s house across the street disappearing from view. We weren’t immediately aware the thud we heard and felt was the tree resting on our house.
Our neighbor called me, asking if we were okay. Because of the tree on our house. That’s when we knew. The storm was short-lived, and we went outside to see what our neighbor was talking about. It was a grand old tree,
living about six feet from our house. The wind uprooted it and it was on the edge of the roof, having made its own divot for its new resting place. The top of the tree draped most of our roof and extended over the opposite side of the house. When we went back inside, we saw we had cracked walls and ceilings in our bedrooms, and the ceiling in the attic now contoured to its new resident.
I was giddy with relief knowing the tree did not crush us. But we had no idea if it was stable, or if it could still fall further. We made calls: to our insurance, to the police, and to my daughter to say we were safe and could we spend the night? We started packing our bags. I wondered, what was in our house I would regret losing if the house was crushed? I thought about pictures, but suddenly they didn’t feel as important as being alive. I did realize the value of my mother’s rings. The stone portion is a custom setting holding my grandmother’s faux ruby engagement stone and my mother’s petite engagement diamond. After her mother died, my mother inherited the ring. My mother joined it with her engagement ring and kept the matching wedding band separate, to be able to wear it alone in the ordinary days.
The last picture of my mother wearing it was at our 2008 Christmas gathering. My niece orchestrated the photo, which was a hands-only picture of all of the women in my extended family. During the photo shoot, her youngest great-granddaughter, a toddler, was captured reaching her plump finger for that pretty ring on my mother’s hand. It’s a precious memory.
When my mother died my middle sister became the ring’s new keeper. My extended family gathered last summer and the women wanted to replicate the picture of our hands. We were aware of the absence of my mother in this picture and was a bittersweet occasion. The ring was now on my sister’s hand, and her toddler granddaughter reached for my ring on my hand. The tears welled up at the innocent repeat of this touching scene. After the photo, my sister asked if I would want to borrow the ring until we saw each other again, in nine months. I was touched by her gesture and accepted. The ring easily fit my finger, as opposed to my sister’s slender, honed piano-playing fingers.
My daughter and I had our hands’ picture taken, and I wore my newly entrusted, borrowed treasure. When our family saw the pictures back at our separate homes, there were comments that my hand was mistaken for my mother’s by several people.
It was fun to bring the ring home and show it to my women friends, but I only wore it on dressing up occasions. It hung on the trunk of my little porcelain elephant ring holder; also from my mother.
On that October afternoon, when the firefighters came to our house and said we should leave soon, as the house and the tree may not be stable, I grabbed my mother’s rings and put them in the pocket in my purse where I keep my keys. And didn’t give them much thought. When we returned to a home with no tree resting on it five days later, it did not occur to me to place my mother’s rings on the waiting elephant ring holder. And when I realized my mother’s wedding band was not in the purse anymore, three weeks had passed since I had hastily stuffed them in my purse.
After carefully searching the pockets and lining of the purse to no avail, I had many thoughts. One was of relief, of not losing the unique stone portion of the set. Another thought was one of wonderment, that even though I thought I had recovered from the recent uprooting of our lives, evidently I was not functioning at the level I needed. I didn’t realize keeping those precious rings in a pocket with my keys was a recipe for disaster. I thought of the times I quickly wrangled my keys out, in a race with my husband to use my remote door opener before he could. And of the times I was talking or laughing, in conversation with someone, at the same time, I was fishing for my keys. I strained for a memory of the sound of a ring falling on the floor or pavement but didn’t find one. I mostly thought about the fact I would need to tell my sister of my poor decision and that it now was her loss as well.
When I went to bed that night, I refused to go to the place of despair and shame to which I am a familiar traveler. I decided to be open to the gifts of this experience I had given myself, even when no gifts seemed apparent. I also decided those feelings were not productive and I wanted to sleep. I was impressed I was able to sleep. And do the next indicated thing, which was to attend the conference on Friday.
On Saturday, I started the morning feeling teary and sad. I made myself focus on looking for the ring. I made a list of all of the places I had frequented in the last three weeks, a total of twenty-three. I called my daughter first and was disheartened when she said the street sweeper had recently come through their neighborhood. We had parked on the street when we stayed there, and one of my theories was that I dropped the ring by the car door. If that was the case, the ring was gone.
My husband and I visited eight places that day, with no one having the ring. Sunday we visited several places, with no luck. I had little hope of finding it and was going to also check pawn shops, and talk to the police. But first, I intended to personally retrace my steps to all twenty-three places. Monday we set out again. By this time I had my spiel down pat, so when I went to the thirteenth place, the restaurant I had been to last Thursday, I recited my information about a lost gold wedding band. When the manager said, ”Yes, we found it in the booth and the other manager has it”, I was taken aback. I gasped and cried with relief. We were not immediately reunited, as the other manager had left it in her pocket and lived eighty miles away. But she would be back to the local restaurant on Wednesday; in two days, at five pm.
In the interim, I found I was still mentally in the search mode; I had difficulty turning it off. One of the places I was sure had a high potential of losing the ring was a local walking path we frequent. We had been parking on the edge of a gravel road. When we visited it again, I found myself thinking about going down the gravel road to look for the ring. I reminded myself the search was off; the ring was found. My husband shared that he too still thought of looking for the ring there. I continued to mentally compose the email I intended to send my sister, delivering the news of the lost ring with which she had entrusted me. I told myself I now had a different ending to report.
When I returned to the restaurant on Wednesday and was reunited with the ring, I was surprised how small it was. I knew it was wider than a typical woman’s wedding band, but it had expanded with my imagination and fears. The manager who had it was concerned I would be upset she had inadvertently taken it home. I wasn’t, but for penance, I made her listen to the story of the ring. She was sweet and indulged me.
With the ring back in my possession, I considered sending it back to my sister immediately so I wouldn’t have the chance to lose it again. I decided I wanted to trust myself and keep it as originally planned. The ring now has its own jewelry box and stays in the box or on my finger. I decided to wear it again because that’s why I have it.
I learned several things:
I would have saved some time if I had looked for the ring in the places I had been most recently. I lost it the day I noticed it was gone. I didn’t give myself credit for at least unconsciously noticing its continued presence in my purse those three weeks.
Losing the ring did not feel like disappointing my mother, or losing a connection to my mother. I have other things of my mother’s which I treasure, but they are not my connecting point to her. I am connected to her via my heart and soul, not her stuff. My sorrow was that I had lost something valuable to my sister. I so hated making a mistake that involved her. I had every confidence our relationship would stay intact; that she loves me. But I don’t easily let myself off the hook when I make a mistake that impacts others.
I remembered the phrase: I made a mistake, but I am not a mistake. It was tempting to go there, to feel like I was a mistake, but I didn’t allow myself this time.
I did lose some self-confidence. When a woman-friend lent me something, I almost cautioned her I might lose it. I stopped myself from saying it and did some self-talk about how few times I have actually lost anything of value. And that I can learn to trust myself again.
If I had not found the ring, I was confident there would still be blessings in this experience. Even though I was saddened, there could be cool things that could occur because of the loss. One nice thing that did happen was the kindness of the people when I inquired about the ring. They did what they could to locate it at their establishment. Some gave suggestions, such as checking pawn shops and calling the police. They all sent me off with “I hope you find it!”.
To have hope the seemingly impossible can be possible. Naw, let’s just go with there are miracles in our lives. I will continue to stay open to those miracles.