0 and 40: The big unknown – Speech intelligibility

After consulting with my hearing aid acoustician yesterday and my ENT specialist in Cologne (see pictures above) today, it is obvious that my ear still is slightly infected. It still needs lots of hearing-aid-free time, and I was given an ointment to use every night. A really stubborn thing, but quite common among hearing aid wearers.

My hearing aid acoustician mentioned a very interesting subject yesterday: Speech intelligibility. Hearing is one thing, understanding is someting completely different. Understanding takes place in the brain, and it does not come naturally. It can be learned and unlearned, so a hearing aid should be used as soon as possible when necessary. But: The brain has to get used to it. Everything sounds different with a hearing aid, louder, maybe just unpleasantly artificial. This is why an elderly person, whose hearing got worse over the last years, does object to wearing a hearing aid at first. Of course, a younger person has the same problem, but will adapt quicker. Training is the only solution to this problem. And: Wearing the hearing aid often and for as long as possible will shorten the process. The hearing aid acoustician will help by adjusting the settings of the hearing aid. Hearing is a very individual thing, it is absolutely normal that the settings has to be changed in the beginning. So do not hesistate to ask your acoustician for help, they are used to it and like to help!

One thing is important to me. People, who are profoundly or almost deaf often are pressured into getting cochlear hearing implants by doctors or authorities, so they can join the hearing community. I think this is a double-edged sword. Deaf people, espeacially those who are used to this from infancy, often don’t miss hearing and are quite happy. Normal hearing people may not be able to understand this, but this is the way it is. Even I, who lives with hearing people around me all the time, am absolutely convinced that there are many crueler things that could happen to me, than becoming deaf. And the most important reason not to have an CI in my left, deaf ear is: There is no guarantee that I will understand speech after this. There is the possibility that getting a CI results in hearing lots of noise, without recognizing speech. In every case, getting used to living with CI takes months, if not years – without knowing how it will turn out. So if you meet a person who decided for/against CI, be aware of the fact that this no easy decision to make.

Troubleshooting

So I gladly put my hearing aid in my ear today after two days of healing, and was disappointed when my hearing still wasn’t as good as I remembered it to be. Of course it’s the weekend, and I can’t reach my ENT or hearing-aid acoustician *deep sigh*.

So next week I will first

1.) pay my hearing-aid acoustician a visit, to find out ifa) my hearing aid is working properly,
b) earwax was pushed into the hearing aid, and
c) the hearing aid still fits my ear canal (the ear changes its shape even in adults).

When everything is alright as the hearing aid is concerned, I will return to
2.) the ENT specialist to check
a) if the inflammation has healed completely,
b) if my hearing got worse. An audiogram takes maybe 15 minutes and can easily be compared with earlier tests.

So far, so good. But I have to admit I feel frustrated, because I really thought everything would be back to normal today.

0 and 40: Risks and side-effects, Part 2

In my post 0 and 40: Risks and side-effects, Part 1 I described a situation that causes additional stress, but hopefully it will be over in a few days. Some side effects of hearing loss, however, are permanent.

• Tinnitus. In my case it’s a constant rushing, that becomes louder when I am stressed or in a quiet enviroment. But I learnt to deal with it when I was a little girl and turn it into music, then it isn’t so bad. I know other people have a hard time finding out how to live with it. However, this continuous noise in the back of my head can be a problem when I really try to focus on something (e.g. what another person is saying).
• Psychological problems.
  1.) As every other person, I am expected to reach certain standards, but my limitations often are ignored or belittled. This is, of course, especially a problem were work is concerned, but this will be another post. Long story short: Be beware of burnout and depressive exhaustion.
  2.) Poor hearing means to be cut off from most people, because they communicate through speaking. Whisper in my ear? Sorry, I can’t understand. Loud music, like concerts or discotheque? I’ll have to pass, I don’t want to jeopardize what is left of my hearing. Go swimming? I got nasty fungal infection in my right ear after my last try, so I am reluctant about that. Meeting at a restaurant or a bar to talk? I hope there’s not to much background noise, because otherwise understanding you is really hard for me. Going to the movies? Depends. Too loud is as stressful for me as too low. And when the movie has been translated, so the language I hear differs from the language the actors speak, I can’t even help myself with lip reading. Many social gatherings are a real challenge for me. And if you can’t participate in such events, you become an outcast. I am more mindful of my abilities today, but after three hours of talking in a grop (e.g. family), I am just drained and need rest. I would like to stay longer, I would like to enjoy it more often. Sometimes I can’t help feeling bitter. It is a fine line between what I can do and “Damn, that was too much!”.
  3.) Invisible disabilities like deafness often are overlooked by society. This is understandable, but pointing it out to those around you again and again is a permanent struggle. Bystanders often can’t judge if a situation is easy to handle (in my case: a dialogue in a quiet setting without disturbing noises) or too much (when I try to follow a presentation and everybody around me is talking).

This explanation is a personal one and by no means representative. What I want to say is, that living with a disability is a hurdle race, where others run on a nice, even running track: You just can’t compare those two.

See also:
0 and 40 Part 1: Hearing the alarm clock without hearing
0 and 40 Part 2: Demand and and encourage
0 and 40: Risks and side-effects, Part 1

0 and 40: Risks and side-effects, Part 1

Everybody living with a disability knows these bad times when your disability causes extra trouble. In my case this means infections of the ear canal and/or middle ear. A hearing aid brings bacteria in the ear and irritates the skin. The skin inside the ear doesn’t get thicker with time, like the skin on the feet does when it reacts to ill-fitting shoes. It remains sensitive.

The reason why I went to the ENT doctor today was, that I have had trouble hearing the days prior. What he found was another bad infection. My doctor has a very strict method of dealing with this: A strip of gauze that is soaked with antibiotic ear drops is put deeply into the ear canal and stays there for two days. I had to learn it the hard way, that this is the only possibility to completely get rid of a really nasty infection. In the past I tried antibiotic ointments that allowed me to continue wearing my hearing aid, because I am really dependent on it!

I got to know my ENT in the year 2000. It was pure luck, he was the locum doctor during the summer vacation of my regular ENT. Back then, I suffered from a very persistent ear infection that wouldn’t go away. We tried every fungal and antibiotic ointment, nothing helped (a few weeks later I was diagnosed with Melanoma, maybe my body wasn’t strong enough to deal with this at that point). What I really like about this doctor is his honesty. So he told me straight away, that my ear wouldn’t heal if I didn’t stop putting the hearing aid in it for a few days. I didn’t like this, because not being able to use my hearing aid meant not being able to work.

Finally I agreed, and voila: The infection was gone a few days later and never came back. As Paracelsus said: “He who heals is right.” Years later, this doctor helped me to get my severly disabled ID card, what was overdue at this point. And he never tried to push me into having an cochlea implant in my left ear. He mentioned it, I told him why this isn’t for me, and this was it. I rarely have to go see him, one or twice a year, so it’s worth the long way.

So I won’t use my hearing aid until Saturday morning. For this time, I will be completely deaf, because the gauze in my ear absorbs all residual hearing. First, I let all the important people know what happened, so they don’t try to call me. Mobile phones and smartphones are really helpful! The normal hearing people pitied me a lot. They think I can’t do anything right now, and that I am not able to participate in life.

They’re wrong. Many years of poor hearing made my brain find other ways of orientation. I am able to find my way in traffic by watching everything around me very closely. Of course I don’t hear cars honking, or the siren of fire trucks. But what about the people who deliberately chose to ignore these sounds by hearing loud music from their car radios? I am not allowed to drive a car without a hearing aid, though, it’s stated in my driving licence. Before I got on the train back home, I bought a coffee to go. I managed fairly well, even without hearing anything. My speach will not suffer in this short time without hearing, and I am capable of lip reading. When the barista asked for my name (she wrote it on the paper cup), I was surprised but I got it right on the first try. I know I can’t do lip reading for hours right now, it’s too stressful because I am not used to it being my only way of listening, but it is enough for the moment. For instance, I would be fine with travelling by bus and doing the grocery shopping. It doesn’t add to my anxiety, because I am very aware of the many things I don’t notice even using my hearing aid.

Of course I am looking forward to Saturday and taking advantage of my hearing aid again. Communication with my loved ones will be easy, as will be watching TV and listening to music. As long it’s temporary, I can tolerate this situation. If deafness becomes a permanent condition, this will be hard to adjust to. But even then, my world will not end.