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Finding comfort in what remains the same

As I've noted in previous blog entries, it often seems as if everything has changed and that nothing is the same. Today I was reminded that many things have not changed. I took Cassie, our 11 year old rescued Cocker Spaniel mix, to the doggy ophthalmologist who is only in town for 2 days every 2 weeks. Cassie has had an ulcer in her eye for several weeks and despite the wonderful treatment our local vet gave her, the ulcer kept returning. When I took her to the specialist today, I was not seen until an hour after my appointment was scheduled. Although irritated by this, it was also a reminder that not everything is affected by my hearing loss and that some things have absolutely nothing to do with it such as being forced to wait at the vet's office to have my dog seen. I am fortunate in that the vet knew exactly what was wrong with her eye as he sees several cases it every visit and we should be able to treat it. Moreover, it was nice to focus on something else: talking to others in the waiting area (and doing so with little back ground noise with the result that I had no difficulty hearing) and being concerned about and comforting my dog. Little else mattered, certainly not my hearing loss, and that was nice. 

Eating out: Where do we go, where do we all sit?

One of the more challenging things with sudden hearing loss is noisy environments, especially restaurants. Over the summer, while first coming to terms with my hearing loss, it was easier to simply not eat out with other people and instead to invite them to my home. More recently, my wife and I have begun to eat out with others again and doing so presents some challenges. I have realized that eating now involves three major decisions.

The first consideration is invariably where to eat. This decision is now largely influenced by how loud or noisy the restaurant will be. Well before my SHL, I knew that certain environments were louder than others. These include places with "hard surfaces" where sound bounces off the walls and floor instead of being absorbed by it. Other factors that influence this are hard chairs (wooden/metal chairs) which cause sound to bounce off them rather than being absorbed by them. Places that have walls or dividers to separate groups of tables into small groups in the restaurant are optimal. If I could design the perfect restaurant environment in which I could eat at, it would be a restaurant with many small rooms of tables, none of which could accommodate more than 4 or 6 people, with carpeted floors and chairs/booths with cushions to absorb the sound.

After figuring out where to eat, the second challenge becomes getting a quiet table in the restaurant which often means eating out early, around 5 or 6 pm for dinner, before the restaurant has a lot of people and is noisy. I have found that quiet tables are often those in the back or near a wall and in a corner without tables on all sides of us.

The third decision involves where I sit. When eating out with another couple, the optimal place for me to sit is such that one of them is to my left and one of them is immediately in front of me while my wife is to my right. This is because most of my hearing loss is in my right ear. With one of the couple to my left and the other facing me, I am able to hear what they say and often extrapolate from body language and other cues what I can't hear. With my wife sitting to my right, I don't mind asking her to repeat things she says. She is also able to hear and sometimes repeat what others have said.

In the midst of these challenges, I am blessed with friends who are very sensitive to me and willing to work with me on this. Every time I've eaten out with friends since disclosing the SHL, my friends have been kind about all this. They are open to discussions about where to eat that will be quiet and enjoyable for ALL of us and if they get there before me, they indicated they have often requested a table in a quiet area of the restaurant. They also offer to switch seats if they are sitting in one that would be better for me and my hearing. I've read of others with less sensitive friends and family who, for some inexplicable reason, think hearing loss is something one simply needs to "get over." In the midst of much loss, I have much to be grateful for.

Everything is has changed; nothing is the same.

I woke up today and was immediately aware of the pressure in my ear and on the right side of my head. I have so much to do that I wanted to get out of bed at 5:00 am when I woke up but instead stayed in bed until 6:00 am. I really hate this and today I hate it even more. I read my blog post from August 18, 2016, just a few days ago and I'm still in that place. My life has changed in very dramatic ways. Many days are a struggle and it's a struggle few people understand. Hearing loss fatigue is real. By the end of the day, I am exhausted. My tigher (female tigger) is absolutely exhausted. I'm tired of this, tired of managing my energy. I want my life to be like it was. I don't want to be reading about sudden hearing loss, I don't want to be in groups for it on FB, I don't want to say to myself "You're grieving, Catherine, and that's ok." I don't want to have this thing to grieve. Every freaking thing in my life has changed. Nothing is the same. How I spend my time is different; relationships are different; my job is different; my sleep pattern is different; my thoughts about what I eat are different as I now consider eating more foods that will increase my energy. My mood is different; gone is the happy tigher who bounced into the classroom, filled with energy and passion for teaching. Everything has changed and I hate it. Meditation has taught me several things. One of the most important things is to acknowledge what I'm feeling and to be with those feelings. Another thing I've learned is that that everything is impermanent and so is my suffering. What I'm feeling now will change but for this moment, I chose to be with it, to recognize it, and to write about it.

It's been a rough day and that's ok.

Today has been a rough day. I worked at home all morning before going to campus for the faculty assembly meeting. The microphone in the room was very loud and the sounds hurt my ears. I have learned to get to venues like this early and sit on the right aisle seat so that people can sit to my left and I can hear them. I sat next to two colleagues who were very kind and asked which ear was the better ear to hear from. The experience was still difficult. It was difficult to converse with them before the meeting started and that frustrated me and added to my sense of loss with the semester starting. I am tired and my tinnitus is louder and more persistent, begging for attention, and that's frustrating. I found myself looking in the mirror this morning and wondering "Who is that woman and how did she get to be 51?" Sometimes this stuff sucks, it just flat out sucks, and I hate it. I hate how my life has changed and I hate that I can't hear the way I used to. Meditation has taught me that rather than denying these feelings and pushing them away, I need to sit with them and cradle them as I would a crying baby. My feelings are important and I need to honor them and be with them. Sometimes life sucks and that's all there is to it.

"Your greatest fear is that you will be changed by your hearing loss."

This is what my therapist said to me several weeks ago, shortly after I learned that my sudden hearing loss was likely permanent. I have thought about her words several times since then with different reactions. Most recently, I find myself thinking "Of course it is. EVERYTHING has changed. Every single thing in my life has changed and is affected by my hearing loss! Nothing is the same. Everything is different."

Every day, when I wake up, I now lay in bed for a bit longer. As soon as I sit up in the bed, the pressure in my right ear hits. When I go to sleep and lay in the bed, I now do so on my side with my right ear on the pillow. If my right ear is facing towards the ceiling, I can't hear very well. I have frequent headaches and must often make decisions between suffering through the headaches and taking meds. If the headache is bad, I have trouble concentrating but if I take enough meds to address the headache, they make me sleepy. Social events are now affected. Friends who know about now ask "Where can we go that will be good for you?" While I appreciate their kindness, it is another reminder of how my life has changed. When I walk down the hall with people, it is hard to have conversations with them as we walk. A student recently asked me how my summer was. My response to her was delayed as it took me a few seconds to figure out that 1) she'd asked me a question and 2) what the question was. I am teaching everything online, something I never expected to do, especially given my love of being in the classroom. When I type and write, I make mistakes I never used to make. I confuse words like there and their in writing; I type "it" instead of "is". I am quieter and crave quiet. I have to manage my energy differently: if I have an evening event, I may adjust my schedule so I have less going on in the morning so I have enough energy left at night for the event. Family interactions are different. I don't enjoy talking on the phone so I limit my conversations to ~15 minutes or so. When there are a lot of family members around and the noise gets too loud, I begin cleaning up so I can still be a part of the interaction but not disappear entirely. I don't want to tell everyone else to be quiet; it's my problem, not their's and I don't want to be "that person" who telling everyone to quiet down. I love my dogs but the sound of one their barks drives me up the wall in ways it never used to. Tennis is different. I will probably ask my opponents to use hand signals when they make the call so I know if the ball is in or out. I have wanted to blog for years but never knew what to write about and yet here I am, blogging about sudden hearing loss. I lost my hearing but I have lost so much more than that. There are so many secondary losses to sudden hearing loss and while I have much to be grateful for, today I am sitting in the sadness and the grief associated with losing my hearing and so much more.

Hearing loss fatigue is real

I used to be able to work 12 - 16 hours several days in a row. Now, after a long day like yesterday, I'm exhausted. I used to be able to work all day and then play a long tennis match, go to bed, and wake up rested. Now I'm exhausted after the tennis match and have to manage my day before I play to make sure I have the energy to play. It's unlikely I'll be able to play very many 7:30 pm matches in the future. Hearing loss fatigue is real and I hate it. One of the things I was concerned about is whether my hearing loss would steal my Tigher (tigger) personality. I'm the one who bounces into the room, filled with energy and passion, and ready to take things on. In fact, I almost called this blog "Tigher lost her hearing". As time goes on, I think my fear is real. Tigher is tired; hearing loss fatigue is real and it sucks.

Back to school with a beginner's mind (part 2)

Cooper Fountain at University of Arkansas at Little Rock

Yesterday (August 15, 2016) was my first day back at school after the summer off. My summer was dominated by my sudden hearing loss in many ways so it was nice to return to school. Classes start tomorrow (August 17, 2016) so yesterday was filled with meetings: a new student orientation, our college meeting, and our first social work faculty meeting of the year. During my lunch hour, I emailed the Hearing Loss Association to question them about a comment their executive director made in a story that was published by the Washington Post. To their credit, the ED emailed me back within a few hours and told me that her comment had been taken out of context and that she was in touch with the Washington Post and they would be posting an update/correction to the story as soon as possible. After leaving campus after a very long day, I came home and had a few minutes to decompress before my wife and I went to a fundraiser for Hillary Clinton.

I tried to approach things with a beginner's mind and in the process discovered a few things:

1. In two of my meetings, we were asked to do small group discussions. These conversations are pure hell for me. Trying to have a conversation with a group of people while other groups of people are also having conversations is difficult and stressful. I can't hear most of what is being said. I am sorry for my lack of sensitivity to students with hearing challenges when I have done this as a teacher in my own classes. 
2. People in our audiology and speech program are open to the idea of creating a hearing loss support group and may be open to it much sooner than I expected. I am excited by the opportunities this may bring.
3. When I disclosed about my hearing loss to my colleagues in social work, some people were very kind and sensitive to my hearing loss and others don't really care. This is not so much new information as confirmation of what I thought would be the case. I work with some really caring people and with others who are pretty self-absorbed and indifferent to many of their colleagues, me included. I will focus on those who care. 
4. I was touched, literally, by a colleague who had heard about my hearing loss through the grapevine and asked me about it. She and I were sitting side by side, waiting for a meeting to start. As the conversation had some starts and stops and we weren't facing each other, she made a point of touching me before speaking to me. This was very helpful and though a small gesture, one I appreciated. 
5. Much to my surprise, I seem to remember how different places are furnished. I knew I'd be able to attend the Hillary fund raiser with less difficulty because, even though I'd only been there a few times, I remembered that the venue had carpet on the floor that would absorb much of the sound in the room. 
6. When I'm at my office for long periods of time, it will be important for me to close my office door and simply sit in quiet and silence to recharge a bit. My extroverted self now needs silence for brief periods to be an extrovert. 
7. Finally, after a day in which I'd been surrounded by non-stop sound, I came home exhausted and craved silence. Sound, for long periods of time, is exhausting and acknowledging my need for silence and getting it is an important self-care activity that I must engage in. 

Back to school with a beginner's mind

Today, I head back to school after having the summer off. While classes don't start for two days, meetings start today. I have new student orientation, a college wide meeting, and our first faculty meeting of the year. Jekyll ate my hearing about 10 days after graduation in the spring and I've spent the whole summer dealing with my hearing loss and consequences of it: pressure, increased tinnitus, fatigue, headaches, and the emotional roller coaster of grief that comes with losing my hearing at age 50.  

In meditation, there is a concept called "beginners mind." For me, this means that one should approach each experience as if it is a new experience and as if I have no preconceived ideas of what it should be like. I try to approach things with a sense of curiosity and openness instead of resistance. I will try to use this today. What will the new student orientation be like for me? Will I be able to hear students and speakers? What about the college wide meeting? What will that be like? As for my faculty meeting, about half my colleagues know but others do not and I plan to tell them in the faculty meeting? What will their response be like? What will telling them feel like? Today, it will be important to stay with the feelings and be present. This evening, I have a political fundraiser, the first event of this nature that I will attend following my hearing loss. I know the setting so I have some sense of the acoustics in the room. Again, I will try to approach it with "beginner's mind" and not a sense of anxiety. I am a bit concerned about managing my energy level, especially since I woke up with a headache, but I have identified times during my day when I can take a break and have some quiet time, something that has become critical for me in responding to this in a sane and healthy way. 

"What's the score?" "Was the ball out or in?"

For the past few years, I have been playing doubles tennis. I play almost year round but less in the summer when the heat is high. During the spring and summer, I play with my wife; during the fall, I play with someone else. Playing tennis with hearing loss presents new challenges. I often can't hear the score being called by my opponents and when the call is questionable (is the ball in or out?), I often can't hear what my opponents say. It is worse with indoor courts as the sounds are bouncing off the walls. My wife has encouraged me to let my opponents know I have a hearing loss, to ask them call the score loudly, and to use hand signals to indicate if the ball is in or out but frankly, I'm tired of the disclosure process. SHL affects things as simple as playing tennis, something I love doing . In addition, the sound of the ball when my racquet makes contact with it is also different and affects how I play tennis. Nothing seems easy with my hearing loss, even something like tennis.

Treatment for ear; therapy for my soul

The standard course of treatment for SHL is a high dose of steroids followed by steroid shots in the affected ear if the oral steroids are not effective. As each individual is different, I not intentionally not posting specific info about my treatment. However, I am confident that my ENT followed the protocol discussed the in Clinical guidelines for treating SHL. I have completed all possible treatment and am now in the holding period for a hearing aid. I have been told that I must wait 3 - 4 months from the onset of the hearing loss to get a hearing aid. Why? My ENT said that the brain actually remembers how to hear and that my brain must lose its memory regarding how to hear in order to get the maximum effectiveness out of the hearing aid.

While the medical treatment is important, what seems to be neglected from the conversation and work with ENTs and audiologists is the impact of hearing loss, especially sudden hearing loss, on one's life. Like many others, I was not given much information about my diagnosis. In fact, much to my frustration, I was not actually told what my diagnosis was but instead read it in the information in my electronic chart online. As a social work professor, I have access to therapists in my community and I am not ashamed to admit that I reached out to one I'd seen previously in response to a student issue I'd been dealing with. Two days after seeing the ENT and hearing the fateful and distressing words "good candidate for a hearing aid," while still in shock, I was in the therapist's office telling her what was going on with my hearing. It was among the best decisions I have made in this process. Following that visit, I have continued to see her to address issues with this and the roller coaster of emotions that comes with it.

Despite this, I remain mixed about seeing her. As I told her, if there were resources in the community for this, I'd be using them instead of seeing her. I found myself both angry at having SHL and angry at the lack of resources in the community to help me deal with this. The role of social support is critical in helping people respond effectively to a variety of issues. Hearing loss can increase social isolation. Given these two things, social support in responding to hearing loss seems key to helping people cope with it but there is little for us. People who know me know that I will soon make plans to address this deficit and I hope others will join me in doing so. Most of the resources seem to be online; what did people do before social media? There is a lot of support on Facebook. I have found these to be helpful and there may be other groups as well: https://www.facebook.com/groups/1732163127062917/ and https://www.facebook.com/groups/284820492631/

Jekyll ate my hearing in my right ear

In May 2016, shortly after classes ended, I was traveling on Jekyll Island, GA, a small and quiet island south of Savannah, GA. I have had tinnitus for 12 years and hear one louder high pitched and persistent sound in my right ear and one quieter but still persistent high pitched sound in my left ear. On May 23rd, I realized I was hearing 3 different sounds in my right ear. I also had a sense of fullness (clogged) in my right ear, something I've had off and on with the tinnitus but which usually dissipates after a day or two. The next day, I noticed I was having trouble hearing out of my right ear but attributed it to the sense of it being logged. A day later, as we were driving back to our home, while listening to music on the drive home, I notice that there was an echo in my right ear. The hearing loss, fullness, and tinnitus were also accompanied by headaches which were severe at times. As we were driving, I kept thinking "My brain isn't processing sound the way it usually does. Something has changed." When I got home and had some time, I began my researching my symptoms and kept returning to sudden hearing loss. After the Memorial Day weekend, I got into see my PCP who was perplexed, especially I did not have any dizziness or problems with balance. She encouraged me to continue taking flonaise and to keep the appointment I'd already made to see an ear, nose, and throat (ENT) doctor in a few weeks. I have often been asked if I blame her and I don't. What I now know is that PCPs are not trained to assess for and identify sudden hearing loss. As an educator, I am now on a mission to change that.

After seeing my PCP, I did what I often do in situations like this: I continued on with my plans as usual. My wife and I played in a Memorial Day tennis tourney but I found my first match hard to play. I heard what I can only describe as static in my right ear and was easily distracted by this. I was sufficiently concerned about my inability to hear while on the court that I also told my opponents, two women I'd played against previously and liked a lot, that my ears were clogged and I was having trouble hearing so that if I asked them or my wife to repeat the score, they'd know what was going on. After the match, one we lost in a tie break and which was the third longest match you can play in tennis, one of my opponents told me she'd had tinnitus and hearing loss for many years and had just started wearing a hearing aid a couple of years ago. She talked about the joys and challenges of wearing one. Still without a diagnosis, I now believe that this conversation was the first of many I have had with people with hearing loss who I did not know had it. The universe continues to send people like my opponent into my life to offer their wisdom, strength, and hope as I move through this journey.

Four weeks later, on June 21, 2016, I saw my ENT. By then, I had read enough to know what the likely diagnosis was but I still retained hope. Hope that I would go into this office, be given a hearing test which would tell me my hearing loss was not as bad as I believed it to be, and walk out the door with a prescription and a lot of hope that all would return to the way it was before I went to Jekyll Island. Hope that my own diagnosis was dead wrong. Hope that these sensations in my ear would soon end. Instead, he confirmed my fears and said that I was a "good candidate for a hearing aid" if the steroid treatment was not effective. My heart sunk and I was in shock. I had been scheduled to attend another event after my ENT appointment that day before going to a memorial service for the adult son of cherished friends. I skipped the other event, went home and told my wife about this, and began to compartmentalize my feelings of shock about "my new reality" so I could support my friends in their grief for their son as I dealt with my own and thus begin my journey of dealing with sudden hearing loss and all that comes with it.