English is not my first language, so please be patient with me and forgive my mistakes. I love the english language and follow english blogs from all over the world, the purpose of this blog is to keep in touch with non-german bloggers. Constructive criticism and feedback are always welcome of course!
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).
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.
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.
Today Seasonal Affective Disorder teamed up with my depression. Great. I really could have done without that.
I really thought nothing nice would be happen today. Cloudy sky, temperatures at 5 degrees Celsius maximum, sleet and bitingly cold wind while I waited for the bus. A few minutes before arriving at my destination, it started hailing so hard that the streets were slippery for a short time – this is really fun when your gait is so unsteady that you use a walker. Then I put my foot in my mouth when I asked my podiatrist about her holidays. Since her husband died of cancer two years ago, she feels very lonely at this time of the year. Bought a few groceries and walked to the bus stop in icy rain. During the ride home I had to keep my walker from rolling through the bus. Got off the bus and was greeted by drizzle and gusts of cold wind. Stopped at the front door and fumbled in my backpack for the keys. Looked down to the right and saw – that the quince bush started to put forth buds!
Wow. I hope the worst of winter is over and the buds hold on until spring.
I really needed this today, a sign that spring will come. Maybe this will not happen tomorrow, but spring will come and I will be fine. The quince bush was given to us by my grandma-in-law, who really had a green thumb. Thank you, Cläre, you are still remembered.
I read a german post yesterday in which a foster mother tells about her struggle finding a place in kindergarten for a child with special needs. It reminds me of the challenges my family faced in the 1970s.
Today, children in Germany are monitored closely to detect problems as early as possible. Back then, we saw our pediatrician for vaccinations and when we were ill. In my case, nobody noticed that I was dear on the left ear. Delayed speech development was explained with my premature birth.
After a infection of my right middle ear in my last year of kindergarten, my mother noticed that something was seriously wrong with my hearing, and that I didn’t react when she called me. This started an odyssey.
I remember the following tests very clearly. Doctors and hearing aids technicans were not prepared to deal with children. My mother was not allowed to be in the same room with me during the tests, even though I made it clear through crying and screaming that I didn’t want her to leave. Nobody even tried to tell me what was going on. I was a clever child, I would have understood an explanation suitable for children. I was expected to behave compliant and calm, as an adult would do. Of course I couldn’t do that, and many unpleasant experiences piled up. I became anxious and shy and regressed. My mother had to be near me all the time. It was a hard time for my mother, too. She just could stand there and watch everything.
Finally the results came in. Not only had the middle ear infection affected the hearing in the right ear, but I apparently was completely deaf in the right ear, too. This, too, was explained with my premature birth. A hearing aid was adjusted for my right ear, and we were sent our way. A hearing aid technican told me a few years ago, that some of her colleagues now have special training to treat children. I hope there are many of them.
Then I was tested for school readiness. I refused to participate. I knew the answer to all of the questions, but I was way too nervous. I kept squirming around on the chair and wanted to leave the room, because I knew my mother waited outside. At this time, children were given the oppurtunity to have a special year of preschool between kindergarten and school. This really saved me. We were a small group of ten children, all with special needs. We had a teacher and an assistant teacher. It was a lot like school, we learned to sit at our desk and started writing and counting. I slowly got used to my hearing aid.
Then I started “really” going to school, at a special school for deaf children. Teachers used sign language and spoken language simultaneously. All of my classmates were using sign language. I didn’t know anything about sign language, so I wasn’t able to really talk to them.
At this point, I could read fluently and was well into learning how to write. The classes bored me. What I didn’t know then, pupils at this school were given two years to learn what was thaught in one year at the normal primary schools. The teachers quickly noticed I was bored, and told my parents I would be better off at a regular primary school. And my parents somehow made it happen.
I was very glad because many of my new classmates were living in my neighborhood, and I knew them. It took me some time to catch up with them, but that was easy. To orient myself in a large group of 25 people was hard, especially during the breaks or physical education with lots of noise.
Meanwhile, my speach had been affected by my poor hearing. I slurred words and it was difficult to understand what I said. I started logotherapy. Hopefully it is more fun for children today. We were shown posters with many objects drawn on them, the therapist pointed at one of those objects and we had to say what it was. Once again, no explanations what we were doing, or why. This training was continued at home, we had a book with pictures in it and I had to say what was in those pictures. The practice payed off, though, I learned to speak quite well. I still slurr the “S”-sounds, my husbands says it sounds like lisping. But apart from that, my pronounciation is similar to that of a person with normal hearing.
So far, so good? I am aware of the fact that I was very lucky.
1.) My mother fought like a lioness that I get adequate therapies and help. She tirelessly worked with me, so
a) what I didn’t hear in class, I would learn later at home, so I didn’t fall behind,
b) my pronounciation was good, and I wasn’t picked on by classmates.
2.) My father was a high school teacher. So
a) money wasn’t an issue. I always got the therapies and expensive hearing aids I needed,
b) my mother could be a stay-at-home-mum and had the time to work with me,
c) being a techer himself, he was able to talk with other teachers and principals eye to eye. This gave me opportunities others don’t have.
My parents motto was: Demand and encourage. I was expected to adapt completely to the hearing world. This was no problem as my intelligence was concerned, but it took years for me to admit that some things are, and always will be, impossible for me. This is not my fault, and I can’t change it, either. Period.
What made our situation even more difficult was the fact that we didn’t know any families facing the same problems, or advice centres. And we didn’t have something like the internet back then. We fought this battle on our own, as well as we could.
Sometimes it seems all of you are busy going to concerts, visiting art exhibitions or hanging around at a new fancy restaurant. I am happy for you, but this lifestyle contains too much stress for me.
Don’t get me wrong, I am no hermit and I enjoy spending time with you, the people I love. And I enjoy going out, but not that often. But I need lots of quiet time, too, or I feel overstimulated, become hectic and start losing sleep. It is a good thing we moved to the countryside, about 15 kilometers away from the next small town and about 20 kilometers away from the next really big town. So I have a choice: I can easily participate in all kind of cultural activities, or I can relax in a peaceful atmosphere at home.
I grew up in a big town. When I decided to move to this sleepy place, you, my parents and friends, wondered if I would end up feeling bored. You worried that I could miss the many ways a city can entertain its inhabitants. The truth is, this didn’t happen. I found a new inner peace instead. And if I look around, many neighbors say the same. If we would have chosen the urban lifestyle, there wouldn’t have been room for our beloved furry companions, two rescue dogs and a cat that loves to roam outside.
You see, there is no reason to pity me. And you all love the peaceful atmosphere here, when you visit us in the summer for our local barbecue. We just talk and eat, but everybody is happy, without any additional entertainment. It’s true, less can be more, even entertainment.
Another issue that needs more than one blog entry. Animal protection became a very important part of our lives in the last years.
Janet introduced us to the world of animal shelters. Our cats came from families (Sammy was born at a local farm, Micky at my parents-in-law house). Most important: They came to us at a very young age. Sammy may have had a hard time following her birth, but this were weeks – not months or years.
The animal shelter that introduced us to Janet and Sam tries to help shelters or animal rescue organisations that bring dogs from Southern Europe to Germany. That’s how we became owners of romanian dogs.
In Germany “adopt don’t shop” became very popular. That’s a good thing. Animals suffer, too, and it is up to us humans to solve this, because we are the reason behind this suffering. But I think many people underestimate the problems that can follow adopting an animal from a shelter. This is the only reason I can think of why several dogs were returned to the shelter in the last weeks after having been succesfully adopted, because “things just didn’t work out”.
Shelter animals have been through hard times. Maybe they have been rehomed several times and don’t understand what is going on. They have every reason not to trust in humans. Maybe humans meant beating, or they just came and went. So the animal learned not to trust anyone but itself. Shelters often don’t have enough staff to really work on these issues. If they are lucky, they are supported by experienced volunteers, but this is not always the case.
Often the new owners expect shelter animals to adjust to their new enviroment from the very beginning, and maybe they expect thankfulness, too. But how is the animal supposed to know everything is better now? Changing your mind takes time, not only for humans, but for animals as well. Throwing in the towel after a few weeks is too early, I think. Many problems can be solved by the right setting and consequent education. But it takes time, patience and getting through setbacks. Every pet owner needs to work on this, owners of a shelter animal even more!
Of course there never are guarantees how things work out. But often shelter animals surprise everyone with their ability to love again. Janet, very shy and anxious at the beginning, changed completely in the first year with us and is very carefree and high-spirited now. Sam, even though he was brought to Germany when he was a puppy, needs a lot more time to leave the past behind. But he shows us he is willing to try.
It’s important to keep in mind that shelter animals often have lots of potential. They are so worth every effort!
This is the first part of a series dealing with my hearing impairment. “0 and 40” refers to my residual hearing, 0% on the left, 40% on the right ear.
I have been called “stupid” (not true) and “deaf” (not completely, thanks) by people with normal hearing. I think, many facts about living with impaired hearing are not as well-known as they should be. Poor hearing often is associated with old age, that’s not the whole truth either.
It’s important to keep in mind that there is not ONE, but MANY ways to deal with deafness. Everybody has to find his/her own.
In my case, the hearing of high frequencies is drastically impaired. That affects comprehension of speech and noticing high sounds as ringing telephones, doorbells or alarm clocks.
When I was a child, my parents tried every kind of alarm clock. Everybody would be wide awake, except me. So for the next years I was dependent on somebody waking me in the morning. Then we found out accidentally, that music (music contains more deep frequencies than the beeping sound of a normal alarm clock) from a radio alarm clock would wake me. I was so thrilled, because that meant a piece more of independence!
That worked well until a few years ago my hearing worsened (that can happen in your mid forties). I do not respond well to light alarm clocks, so I had to look for something that works with shocks. And it had to be portable, in case I don’t sleep in my bed.
Our first try was a dual radio alarm clock with an alarm shock bracelet. Both alarms could be set to beeping, beeping and activating the bracelet, or just activating the bracelet. The bracelet had three settings. It worked well for me, and my husband still uses this alarm clock in beeping mode. But there was one problem: The bracelet had no charging indicator, so I couldn’t be sure if there was enough power left to wake me in the morning. That led to unnecessary charging and/or worrying if the bracelet would go of in the morning.
For me, a cheap smartwatch works best. It’s silent vibration-based alarm clock is strong enough to wake me, and it has a charging indicator. This is not for everyone, i.e. when light impulses work better or no smartphone is around. But I was pleasantly surprised how many alternatives to the classic alarm clock can be found.
Until recently, I didn’t know OT is also offered as group therapy and was used to my one-on-one therapy sessions. Then my therapist asked if I wanted to join a craft group that was about to start. Being in groups is a difficult situation for me because of my poor hearing (I am deaf on my left ear from birth, an infection of the middle ear when I was five left me with 40% residual hearing on the right ear). Hearing aids do not compensate this completely. Especially when several people around me are talking at the same time, I struggle to follow the conversation and tire easily.
I was told the group would be rather small, so I decided to give it a go. We are five participants and our therapist. Every member has her/his own issues, but we all are very supportive and try to understand the other’s problems. The 1,5 hours on Wednesday really fly, and everybody feels at ease. We talk a lot, but it never turns into whiny why-me-monologues. Quite often, one of the group members offers very good advice – peer support can be so helpful and compliment the therapist’s point of view.
Speaking of our therapist: She sits with us, joining the conversation sometimes, but there is not much for her to do. The group runs itself most of the time. I never thought I could enjoy this so much. Even if don’t like the things that I create, the calming atmosphere and being with those guys lift my mood a lot. And maybe, I will overcome my overly supercritical attitude one day and get to like my artwork.