My daughter Hellen was nine years old when she was diagnosed with NF2. By the age of thirteen, over a few months she became completely deaf, partly due to operations and treatment necessary to stop the tumors from growing.
A hearing person believes being deaf is all about not being able to hear music, nature, or voices.
That’s a frightening prospect, but what’s worse is not being able to communicate any more without a little help from your friends.
Communication, effortlessly and thus taken for granted by the hearing ( including myself once) became a terrible struggle and a huge problem to overcome.
Hellen explained that since she lost her hearing it was as if every morning she woke up in a giant sound proof glass bell that prevented her from keeping in touch with the outside world.
But after a year and several sign language courses we, as a family, were able to communicate again without pen and paper. Not that we knew all the words, but for the unknown words we used fingerspelling.
That first year we learned a lot more than only a new language. The difficulty wasn’t a new vocabulary or a different grammar, no, it meant stepping out of our comfort zone. We had to learn to tell and show at the same time so the conversation would be easier to follow and become richer.
But most important was to showing we were listening, by nodding and maintaining eye contact.
Communication this way means giving the person your undivided and devoted attention. You can’t do the washing up, sweep the floor, look at television, be in another room, or talk with several people at the same time.
We also learned this “showing, time taking, moving your hands” language, isn’t very popular among hearing people and Hellen lost a lot of friends.
At the end of that first year Hellen and I passed our last sign language course and we intended to celebrate this by shopping for some new clothes, having a nice lunch and of course eating ice cream.
But the noise on the streets of the city and the loud music in the shops prevented me from hearing her properly. Over and over I had to ask her if she could repeat what she just had said. She spoke with a soft voice, because she couldn’t hear herself and she was always afraid she was talking to loud.
And I, at some point, sighed.
Hellen noticed my sighing immediately.
“Exhausting isn’t it? Not being able to hear?” she said.
The next ten minutes or so we continued our mission in complete silence.
She was trying on some new things in a small changing room and then:
“Mam, will you please have a look and help me with this brassiere?”
I was pleased that we were on speaking terms again. I stepped behind the curtain to join her in the little dressing cabin but an overeager shop assistant pulled the curtain to one side saying:
“It’s strictly forbidden to use this changing room with two people.”
I felt sorry for my daughter, she must have felt most uncomfortable standing there, getting disciplined in her underwear.
I explained the situation while closing the curtain again but it only made things worse. The assistant now threatened to call for the manager. Her voice got louder and louder… People stopped and stared at us.
Meanwhile I was still trying to convince this lady, that although my daughter speaks like a hearing person she was deaf.
Hellen opens the curtain, fully dressed. She raised her eyebrows asking ‘what??’
I fingerspelled an offensive term for the shop assistant, and I saw a little twinkle in Hellen’s eyes.
She knew I’d never usually use this word.
She grabbed my arm, (due to NF2 she had some balance problems), and said with her most lovely smile to the assistant:
“Have a nice day!”
Then Hellen straightened her back, held her head up high and with the grace of a princess she left the shop.
It took us some time to find out the best shops with understanding employees, who never got tired of helping my daughter to get her the perfect outfit.
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