I had perfect hearing until about 2 1/2 years ago when I suddenly began to show symptoms of Autoimmune Inner Ear Disease (no one in my family has had this; I have a healthy lifestyle; the origin of this disease is still a mystery.) Over the course of 10 weeks, I lost most of the hearing in my left ear and some high and mid-range frequencies in my right ear. I finally found appropriate treatment from a specialist and with long-term use of an immunosuppressant medication stopped the progress of the disease and regained normal abilility to hear mid-range frequencies in my right ear.
I am currently functionally deaf in my left ear and very mildly impaired in my right. What this means in practice is that I have no problem at all understanding someone who is speaking to me in an optimal auditory environment but do have significant problems in non-optimal environments (whenever there is background noise, multiple people speaking at once, someone speaking to me from another room).
I wear hearing aids in both ears ($5000, not covered by insurance), but they don’t help very much. My left ear is so bad that it is officially “unaidable,” although there seems to be some marginal benefit with the hearing aids. My right ear is so good that HAs don’t really add that much. Together both HAs give me about a 5-10% boost in listening comprehension in ideal environments. They are also equipped with technology that supposedly helps in challenging environments, that channels the sound in such a way that I get more of whomever is speaking directly to me and less of the background noise.
I feel like I have fully grieved my loss and moved on with life. However, I feel like my husband has still not emotionally come to terms with it ... and I am trying not to feel hurt and resentful. I am trying to find the best way of handling the situation, although I think we may have made some good progress recently.
A couple of days ago, we went on an all-day pelagic birding expedition (cruise for bird nerds). I opted to leave my hearing aids at home because there was a high likelihood of rain and/or getting doused with sea spray (water immersion is a great way to destroy your hearing aids). I communicated this to my husband ahead of time and told him that we were going to have to try extra hard to communicate with the lack of aids plus all the noise from the boat, wind, waves, other people etc. I think we did really well on the trip. We were both patient and I felt like I understood almost everything. However, after we were back on shore, my husband got really pretty upset and snarky with me because I hadn’t brought the HAs and left them in the car. (I left them at home.) So, we’d have to have dinner without the aids.
Since he didn’t seem to be getting out of sulk/snark mode, I decided that we needed to have a little talk.
My points:
*He forgot an entire knapsack worth of stuff for the trip and we just laughed it off, whereas my leaving my hearing aids at home was a conscious, wise decision which we discussed ahead of time.
*Whether or not I wear my hearings aids doesn’t really make that much difference in terms of comprehension. He seems to think that it’s night and day, but it’s not. Again and again, when I can’t hear what he is saying, he will ask me if I have my hearing aids in. I almost always say the same thing: “Yes, I almost always wearing the hearing aids when we are together, but they don’t help that much — 10% more max. It’s not like they make my hearing that much better.”
*I dislike the fact that he has been speaking to me as if I have no problems at all (not getting my attention first, not looking at me, talking at me from some other room, not positioning himself on my good side, etc.), then if I don’t understand, just YELLING the same thing again. I told him that I don’t like to be YELLED at frequently, that it doesn’t make it fun to be around him (it feels abusive, although I didn’t use that term).
I also asked him if he could tell me what kind of hearing loss I had (as in, i’ve struggled with this for 2 1/2 years, do you remember anything we talked about) and he could not. He started to guess, but then gave up and asked me.
He was upset, but the next day, I noticed that he really tried to be different. He would get my attention before speaking by saying my name or by tapping me on the shoulder. He would come into the room where I was when he wanted to ask me a question. He seemed a little self-conscious and awkward doing it, but he was doing it.
Then, this morning he seems to have forgotten again. I was in the kitchen cooking (exhaust fan, boiling water, my bad ear facing him in the dining room) when he started going on about something. He did come into the kitchen about 1/2 way through his observation (of which I understood not a single word). I said: “I’m sorry, I didn’t get that. Could you say that again?” He repeated the whole thing looking at md and I understood every single word. Then, he left for work seeming slightly upset.
I am thinking and hoping that he is just upset at himself for falling down on the job and am trying not to take it personally.
He really is a very special person and wonderful husband. We will be celebrating our 30th anniversary in a month or so and have been through so much together. I know this situation is frustrating for both of us and, like I said, am trying to find the best way through it.
I am wondering to what extent he is in denial about the situation. I am wondering if there is some magical thinking going on of the variety — “if I just pretend everything is normal, everything will be normal.” Also, I now know that he is worried about my potentially getting worse since he asked me about this for the first time when we had our little talk a couple of days ago. (Answer: the disease is still in remission. My specialist ENT thinks there is a good possibilty that it will stay in remission for the rest of my life, although there is no guarantee. However, the more damage there is from the disease, the more susceptible one is to accelerated age-related hearing loss. Over the last 2 years, there has been a small down-tick in my bad ear, but the good one is holding steady). I also know that at least up until recently he has repeatedly asked me about possible improvements in my hearing when I have told him again and again that after the first six months there have been zero documented cases of hearing improving in this condition. I mean, we are talking about the inner ear. In fact, it is semi-miraculous that there was any improvement at all. Autoimmune Inner Ear Disease is the only disease of the inner ear that shows any improvement at all (and, like I just said, that is limited).
Ideas?