This is not how I’m feeling today, but I still want to write about the things I’ve experienced as they happened and the next thing that stands out in my mind is the grieving part.  I don’t dwell on what I have lost.  It does creep up on me once in a while.  I have a sweet new little grandson (my first grandchild!) and at the time this hearing loss episode happened he was 3 weeks old.  It occurred to me that I will never hear what his natural voice sounds like.  I only teared up for a second because I also realized that he and I will be able to communicate somehow and I envisioned some grand adventure or game between the two of us where we might talk in “secret code” with each other (sign language?) or something else that makes it fun.  Lord willing, I will be able to watch him grow up and be a part of his life, however that takes place.

What I am feeling the most sadness about is communicating with my husband.  We generally touch base by phone during the day at some point.  Sometimes it’s only a few minutes, sometimes longer when he has a break, but it’s one of the highlights of my day.  It is so difficult to understand him on the phone now and his voice doesn’t sound the same.  I can’t even tell it’s him unless I see the caller ID.  The CapTel (captioning telephone) helps.  At least we can communicate.  But I am finding that it is not the perfect solution.  There is a significant delay between what the caller says and what appears on my screen in captions, which takes some getting used to and often there are places where it just says (speaker breaking up) or (indistinguishable).  Better than nothing, of course, but I still miss talking to him the way we used to.   It’s not just the phone.  Think about how many times you communicate with your spouse.  There are so many just general practical every day things to say (“What do you want in your lunch?”  “The phone’s for you”.  “Where’s Cody?”).  Then there’s the  talking about things that matter, like what’s going on with the kids, or what can we do for this christian who is struggling,  or just sharing what’s on your minds ….even in your most intimate moments together as husband and wife there are words to speak and it’s so hard not to be able to do that.  That loss does make me cry when I think about it.

I mentioned in my last post that I really have only had 2 days that were “bad” or especially tough.  I talked about the first one.  The second one  happened last Sunday.  The high dose of prednisone that I am on keeps me awake at night.  (I’m averaging about 4.5 hours of sleep these days.)  That morning, I arrived at church feeling fine.  I was trying to talk to someone a few rows ahead of me right before things got started and was “talking over the crowd” (ie being  louder than I needed to) when suddenly Chet shushed me very firmly and told me I was being really loud!  My perception at that time was that he was annoyed with me….it felt like I had done something “wrong” and he was irritated about it.  It turned out that he was actually saving me from a very embarrassing situation.  What I perceived as irritation was urgency on his part…the speaker had stepped up to the microphone and the audience was quieting down.  I had no idea.  I was mid-conversation and clearly going to continue at a very loud volume.  I was moments away from everyone else being totally quiet and me continuing to speak at a high volume!  He was saving me!  (My hero!)  I didn’t know that at the time, though, and that was the thing that started me on a weepy meltdown.  I’m sure if it hadn’t been  that, something else  would have been the catalyst.   I couldn’t keep myself together and had to leave for a few minutes and try to get my tears under control.  After church, someone was speaking with me, and joked  “You don’t have to yell, you know.”  They were just trying to help and let me know in a joking way (I often handle things with laughter, too) but I was hanging on by a thread so I couldn’t really laugh about it at that moment. The rest of the day I felt weepy.  We had what our church calls Flock Groups that night (a small group gathering) and it is set up differently (no microphone, lots of group participation, fewer people to sing so individuals are heard more) and it was very difficult.  I couldn’t hear anything spoken and while I could understand some of the songs, I didn’t try to sing at all.  I knew that I was only one wrong look or comment away from a total and very public meltdown.  I have to say, encouragement is everything during those moments.  I chose to isolate myself a bit from the group during the fellowship portion and a friend basically came and got me and told me to come sit down with her.  She let me talk some of my feelings out and it really helped.  Another friend visited with me, and  even though we didn’t talk about any of this,  she walked over to me later and just out of the blue gave me an extra hug. (I’m guessing she noticed along with everyone else my “barely holding it together face” during flocks!)  Those things make such a difference.  I think sometimes we feel that we might say the wrong thing so we are hesitant to talk to someone who is hurting or sometimes we think we need to have some kind of special wise words to share.  Really, a hug or a squeeze or an “I love you” or a listening ear is all that’s necessary.

I imagined that the grief part of this would be similar to grieving a death and that has been true.  The day I had a good cry over it all, it really surprised me just how painful it was.  They were deep, hurting tears.  More painful than I expected.  When I lost my dad in a traffic accident a few years ago, I knew he was a christian and I knew that the scriptures say that for a christian the day of your death is better than the day of your birth.  I knew that in the big picture this was actually a good thing for my dad.  It still hurt to lose him, even with the right perspective on things.  I know that in the big picture, losing my hearing is not really a bad thing.  I think I have a good sense of perspective about that, but  the loss does still hurt.  I remember when my dad first died how much love and support there was, and I also remember that after a couple of weeks there was a distinct feeling that everyone else was getting on with their lives and back to normal (which they were and should have been) but for me it was as if it all just happened and nothing felt normal at all.  I felt very disconnected from “normal.”  I feel that way again here.  It feels like the initial acknowledgment that something has happened is past and most people have moved on with normal life.  Of course that makes perfect sense and is exactly how it should be.  I still feel like something huge just happened to me and I don’t feel like life is normal yet at all.  This is still something I’m thinking about and dealing with almost constantly.  I believe this, too, is probably the way I should expect to feel at this point and I think that I need to allow myself a period of grieving the loss and that ultimately it will help me move forward in the positive way I want to.

Today has actually been a very good day.  I’m feeling much better able to cope than on the days I described above.  I’m thankful for the encouragement I have received and am receiving from all of you.  I think most of us know it’s good to encourage others, but I don’t think we always realize just how much difference it can make for someone.  Your words are making a very big difference for me.  Thank you.

Did you know that when you turn the key in the ignition to start your car, you rely on sound to know when the engine starts and it’s time to stop turning the key?  I never would have thought of that, but now I have to estimate when to stop turning the key and try to figure out if I got it right and the engine is actually running.  I pretty much have that down now, but it’s one example of the many ways that not hearing well affects your daily life. 

I’m a person that prefers to record things chronologically, so today I want to share some of the moments over these first weeks that stand out in my mind in the order that they happened.  The first weekend after this recent episode, we had a family dinner at home.  We all were sitting around the table and, as always, there was much laughter.  I couldn’t follow much of the conversation, and I realized that it just isn’t practical for every word to be repeated for me.  When it was obvious that something was particularly funny or notable, I’d ask someone to tell me what happened, but mostly I had to be content with watching everyone else interact and accept the fact that I’m not going to know everything that happens anymore.   I’ve been at that table many times with our family and I know the kind of laughter and banter that goes on.  While it’s true that I was left out of the fun of what was specifically being said, I was able to mentally take a step back and truly just enjoy watching them interact and have fun.  My joy came from their joy.  It was one of many mental shifts I would have to make, but I realized that I was still a part of the family circle and there is still much joy to be found, I’d just have to find it in new ways.

I’ve only had a couple of “bad” days so far.  The first was at the end of the first week.  There was someone that had been having a rough day and I wanted to talk to them about things.  When someone is talking about things that matter to them or things on their minds or hearts, you really don’t want to stop them and make them repeat things over and over again or “shout” them loudly enough for you to hear.  You certainly can’t nod along in agreement if you are only getting the gist of the conversation – you don’t know what you are agreeing with!  It was frustrating for me to have to try so hard…I wanted to be there for that person.   We made it work, but it was discouraging for me.  That evening was also a church night.  I love being with my church family and right now it is my most challenging environment.  When everyone is visiting before things start or afterwards there is a lot of background noise.  My hearing aids amplify that along with the sounds I want to hear, so for me it is very loud.  Combine that with the fact that my own voice is very soft and the natural instinct is to speak very loudly over the noise.  Unfortunately, when I think I am making a point of keeping my volume lower to counteract that, I still apparently am being much louder than I realize.  When a speaker is at the microphone, I can follow it with a great deal of effort if they are speaking directly into the mike.  I don’t understand anything spoken in the audience.  Singing is quite the experience.  I’ve had to relearn singing several times over the years and have always relied on friends and family to help let me know when I’m getting it right and then once I get it, I’m ok.  That’s proving to be much more difficult this time.  I can hear the audience singing, but it doesn’t sound the way it used to.  Have you ever been to a Vacation Bible School session where all the kids are together and singing songs at the top of their lungs?  It sounds like shouting more than singing, (but it’s still wonderful to hear! ) That’s similar to how the singing sounds to me now.  Sometimes being able to hear the song leader helps and sometimes it makes it harder for me to get the melody (remember, what I do hear sounds very monotone and mechanical).  It sounds strange, because I know most of the songs we sing very well and I know most of the tunes very well, but it takes me a line or two before I quite get it in my head what the melody actually is now.  I guess too many conflicting sounds that “muddy the waters” a bit before I find it.  Add to that the fact that my own voice is so quiet and different and it’s challenging to find the right notes as well as the volume…..it’s tough.  What also is hard about singing is that when I am singing at a volume that Chet tells me is normal for me, it feels like I’m not making an effort.  I know that sounds strange, but we all know people that sort of go through the motions when they sing – their mouths are moving but there’s no real effort behind it and not much sound coming out.  I have always been one to sing out and when I sing at the volume I should, even the amount of breath coming out of my mouth doesn’t feel like enough to me.  I feel like I’m being one of those people who is only half- heartedly participating and I HATE that feeling.  I know it’s not true (I’m actually probably make the most effort of anyone there), and I also know that ultimately I might just have to learn to “make a joyful noise” whatever it turns out to be, but I’m still hoping to find my way to being able to sing in the assembly in a more normal way.  By the time class is over and I’ve worked intensely to follow as much of the lesson as possible, I’m truly wiped out mentally.  It’s still good to be with everyone and I’m hoping this will get easier with time.

One real blessing in my life right now is my new CapTel (captioning telephone).  We have it up and running now and it takes some getting used to, but it enables me to use the phone again and that is HUGE!  There is an operator that captions everything that is being said (including the background noises….I got a caption that said (toilet flushing) on one call!!!!  Still laughing about that.  I never would have known… lol)  There is a slight delay between the speaker’s words and what I see on my screen so it takes some getting used to but I am so thankful the technology is there! 

I could keep going, but I’m afraid if I write too much at once no one will want to take the time to read, so I’m going to stop for now.  I appreciate so much the encouraging words you have for me and the continued love a prayers.  It makes a difference.

May 24:  Late that night I walked in the door after a wonderful overnight getaway with my hubby, and hugged my 20-year-old son.  I realized that I couldn’t hear what he was saying and that I couldn’t hear what my husband was saying either.  I could tell there was talking, but it was faint and unintelligible.  I’ve had issues with my hearing for a number of years, but I’ve always been able to hear my husband, Chet, and my son, Cody, fairly well even without my hearing aids .  This was not good.  I went to bed hoping it would be fine by morning.  I’ve had “weirdness” with my hearing before and had it clear up.  Hopefully that would be all it was.  The next morning Chet and I sat down to have coffee and I couldn’t follow a single sentence of what he was saying…not even up close, watching his mouth and with him speaking very loudly and repeating things.  I had that feeling you get when something serious has happened – not panic or upset. The eerily calm feeling you get when you know it’s serious. I realized that my life had just been changed in the blink of an eye.   Chet called the doctor for me (my very specialized specialist!) and I was seen on an emergency basis.  Sometimes when you have an episode of SSHL (please see my story page for an explanation of what this is) if you get treatment fast enough some hearing can be saved.  I’ve never recovered any hearing once it has been lost even with aggressive treatment, but it’s always worth a try.  I had a steroid injection directly into my eardrum and was put on a high dose of oral steroids, plus a controversial treatment of an anti-viral drug.  The doctor wanted to “pull out all the stops” since this loss was so dramatic and clearly life changing.  After the injection, I had to wait 24 hours to wear my hearing aids again.  Without them, I am close to deaf.  I hear some sound, but there is very little that I am able to decipher and make sense of.  At that point, I honestly didn’t know if I would be able to hear anything even with my hearing aids in.  The audiologist tried to adjust them to my new hearing levels at the clinic, but only as a stop-gap until the doctor decided to stop treatment and my hearing was considered stable.  No fine tuning was done, just a basic “turn it up as loud as you can”  adjustment.  That first day I remained calm and I think mostly I just had to wrap my brain around the concept that this really did happen.  I’ve known it was in the realm of possibility for a while now, but in the past I’ve had other symptoms that I’ve come to associate with these episodes of hearing loss and this time there was no warning at all.  One moment I was fine, then next I was nearly deaf.  I began to realize the implications of this change.  I couldn’t hear the phone ring.  I couldn’t hear my kids walk in the door.  I couldn’t really understand anything, even up close and face to face.  I couldn’t hear my own voice – it was very faint.  The next morning we had a planned ladies’ activity at church.  The time coincided with the window of time when I could try my hearing aids.  One of my friends texted me and asked if I’d like to have lunch after the activity.  I agreed, not knowing if I’d be able to have a conversation or not.  I felt nervous about trying to interact with people, but I’ve always had a sense of adventure and that was the feeling I had on that morning, too.  I’ll dive in and see what happens!  If I’m too loud, we’ll have a laugh and someone will help me figure it out!  We’ll play charades if necessary!  Once I arrived at the church building, I put the hearing aids in.  I could follow some conversation!!!!  It was difficult and even when I could understand the words, the voices were very distorted.  Have you ever seen a tv program where a kidnapper calls with his ransom demands and uses a voice scrambler of some kind?  That’s what it reminds me of.  The human qualities of the voice are mostly gone for me now.  I feel like I’m speaking to a computer or machine all of the time.  Occasionally, when I’m one on one with someone, I can distinguish a characteristic that would allow me to recognize whose voice it is, but mostly it’s very monotone, very distorted, and very mechanical.  Surprisingly, initially there was no sadness or upset at all.  I honestly felt a tremendous sense of gratitude!  I really did.  I was unbelievably grateful to God that I was able to follow some conversation and that the hearing aids did help, even though it was still very difficult to hear.  I felt gratitude for the wonderful support system I have.  I knew that my family and friends would do whatever was necessary to show me love and support during this time.  I would not be alone and I was incredibly grateful for that.  I found it easy to look at this as just a new path on the road of my life.  I was put on this path and there was no decision to be made.  I trust that God is in control and I have no qualms or anxiety about following the path I’ve been put on.  It will be a good path full of blessings that I probably can’t even imagine right now.  I’ve always prayed that God would use me however He saw fit, and I believe this is how He chose to answer that prayer.  I don’t know yet how I will go about my work in the kingdom, but I know that I will go about it.  I know that there will be a big adjustment time for me and my entire family.  I know that there will be good days and difficult ones.  I have no problem looking at the big picture and knowing that this is not a tragedy, only a change.  I imagine that there will be a grieving period for what has been lost, but that will pass.    I’ll figure out what technology is out there to help me function as well as I possibly can.  I’ll learn sign language or do some formal training in speech-reading (formerly called lip-reading) or whatever it takes.  I love to research things online and there is a vast amount of information and technology to acquaint myself with.  It’s overwhelming at times to deal with so many new things at once, and it’s truly exhausting, but I will pace myself as needed (maybe even allow a nap or two!) and I will figure this out.