Journey into Silence (Part One)

By Asa Backlund

It was a beautiful summer day my husband; my daughter and I were on the ferry from Stockholm, Sweden, to Mariehamn on the Island of Aaland. Along the way, I bought one of those wristwatches with an alarm. I thought it was kind of low in tone, but I suspected this was intentional so that others were not disturbed if my watch started ringing all of the sudden.

We had spent a wonderful week on a small island in the archipelago with my sister, her husband and kids. Never did I think that wonderful summer trip was the beginning of a long, hard trip into one of the darkest rooms of my soul. 

This journey into silence proved to be just that.

At the end of the week my husband told me that my alarm on the clock went off at all hours yet, I seemed unaware. We decided to set the alarm to test my awareness of it.

I didn't hear it.

Not until I put the clock right up against my left ear --then I heard a faint sound.

When I held it to my right ear I could hear absolutely nothing.

We all thought that I might have wax in my ear and that I should go to the doctor when I got home.  I never thought that I had a hearing problem. I thought I heard everything just fine.

Once we were home, I went to the local health clinic for a hearing test. They tested not once, but twice, and then a third time. The results were always the same. I had almost no hearing in my right ear, but some hearing in my left ear.

I got an emergency referral to the Ear Clinic at the hospital the same day and they did the same kind of tests but more thorough. The doctor came and talked to me. She told me that I was loosing my hearing for some reason that was unclear at the moment… but that I was already deaf in one ear and didn't have more than a bit left on the other ear.

I was to get fitted with a hearing aid as soon as possible.

This was the start of a long series of tests (and waiting for tests) for me. Sigh.  I had to wait for the hearing aid fitting since they had a shortage of audiologists and a long line of folks waiting to be fitted.  Summer gave way to winter and in my waiting, I developed more and more Tinnitus. It was pure hell!

During the months of October, November and December it was as if I was living in a water bubble. I could hear less and less but the noises and ringing in my ear had gotten worse and worse.

I thought the doorbell rang every night and I used to wake up my husband and tell him to open the door… of course there was nobody there.

I remember going Christmas shopping in a beautiful, snowy white city center; the shops all lit up with Christmas lights, beautiful colours and decorations everywhere. I heard almost nothing but noise.  Oh and I heard the snowplows, and I heard a helicopter. I ducked into a doorway more than once trying to escape the snowplows that where not there!  My tinnitus had taken a life all it’s own, I thought the sounds I had been hearing where snow plows.

I had a very hard time looking over my shoulder all the time. Trying to understand where the sounds were coming from. I never really got it right cause the tinnitus played such tricks on me and I was not familiar to this hearing loss yet.

That Christmas was not much fun. I remember not being able to sleep much at all; sitting crying in the office of the Psychologist that the doctor had referred me to. This was the day before Christmas Eve, in Sweden we celebrate Christmas on the 24th so I was looking forward to Christmas Eve with my heart frayed and hanging outside of my body.

Feeling lost in a familiar world-- that was suddenly new and filled with unknowns.

So vulnerable, so sad and so confused I didn't know if a hearing aid would help me.  I was to get one the first week of January. I could only get one, since the doctor decided it was no use fitting me with two since I had lost everything already in one ear.

I remember the male psychologist trying to console me, trying to make me feel that there would be a tomorrow that was worth waiting for, But at the time, I could not see that.

Prior to my hearing loss, I had applied for and gotten a counsellor job, but everyone in Sweden people usually get hired with a six month trail basis first and during that time the employer can choose to end the employment with a lot less grounds than they can after these 6 months. I had just got a letter from my employer stating that they would not permanently hire me because of my hearing loss.

So, I lost my job too.

I lost everything it seemed.

I was so truly alone that Christmas.

My family tried to be there for me, but they could not really understand. My daughter had turned 4 years old that Christmas and I could remember us having more and more difficulty communicating. Since I could not sleep very well because of the tinnitus I used to sit up in the living room, listening to music through my earphones so not to disturb the others.

I remember one long night when my husband worked and my mother in law was with me instead…  it was one long night when I had more whiskey than I should have had and almost drowned in my own pity.

Life continues outside our isolation, and so, Christmas came and went, not a fun one but I still managed.

In the beginning of January I got my hearing aid and I was so happy cause I could hear again. I thought it was heaven and that things would now be ok.

We were building a new home at this time now I wonder how I could have started such a project in the middle of the physical and emotional mess I was in.  But we did start it and we had to finish. We were due to move into our new home in the end of March of 1998.

We had to sell our apartment, we had to get it cleaned up and arrange for the moving of all our stuff. We quickly realized that since my husband was rarely home and I was not feeling to good, we could not move all the stuff ourselves, which of course would have been the cheapest way, but my sister and her husband offered to pay for the movers and we gratefully accepted that offer, although it felt like we were nagging our prides.

Moving in the north of Sweden in March can be a hassle since the snow is still around, and more often than not, in large amounts too!

The day we were moving I had slept only 3 hours or less and I was feeling really down. We had been up late, doing all the packing we could. At 7 am the movers came and around 12 we left the apartment with the last lot. So much for pride, we were so grateful that they helped us!

The snow was coming down really bad and the movers truck could barely come up on our non-existent drive way. It was a snowstorm and the weather was awful. Hubby and a friend of ours had to begin snow shovelling to make sure that the truck could come as near of the front entrance as possible. My mother and father were there along with my best friend and her husband.

I felt kind of weak and my legs started to shake. All of a sudden I knew I was going to faint. I told my husband that I had to go to the hospital because something was not right. He, being a doctor could see that something was wrong and he and mother got me into the car.

Five minutes later I started having convulsions, biting my tongue, having some kind of seizure. I ended up having to stay in the hospital for a couple of days. I had an epileptic attack, a grand mal attack. Now the doctors began to look kind of worried. I could see this in their faces.

I was loosing my hearing fast, and I was having epileptic attacks. I had to have a MRI and a CT -scan. Both were negative for any brain cancer or other kinds of problems. To this day the reason for my hearing-loss and deafness is unknown. Some kind of autoimmune disorder is likely though.

I had to start taking medication for the epilepsy. I could no longer drive. I also had to change my hearing aid to a much stronger one. My hearing was now in the 80 dB range and it was going down fast.

By the time summer rolled around again it was 90 db. I became more and more isolated. I could still hear music through the earphones and when I had it on almost maximum volume. I had trouble though talking on the phone. I became more and more isolated. The whole spring and summer went and I cannot really remember anything of it. Except how tired and sad I was.

How I had to force myself to even get up in the morning.

How I would send my daughter to kindergarten in the morning and then get back into bed set the alarm at maximum volume, so that I could get up in time to walk to her school and get her. It was awful, awful and more awful.

The epileptic medication made me tired, it made me drowsy; we tried another kind of medication, that didn't work either. I got another attack and bit through my tongue really bad and I had to change medication again. This time I got something that stopped the attacks but I was even more tired in the beginning of taking this medication.  I thought that I would get over this.  I thought that soon the pain would end and things would get back to normal soon.  Normal?

(To be continued next issue.)

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