Thursday 29 September 2011

Cause of my hearing loss.

Today I went to see my ENT doctor to discuss my cochlear implant surgery and get the results from the MRI and CAT scans. I have been diagnosed with vestibular aqueduct syndrome, a genetic syndrome that causes sudden deafness. This explains my profound deafness in my right ear when I was four years old and the sudden loss of hearing in my left ear at 39 years old. This syndrome is passed on from both parents who carry the recessive gene and the hearing loss occurs after birth, usually due to trauma to the head.
Next step is to have the cochlear implant surgery in order to restore some hearing in the left ear so I can participate in family, social and work life as normal. The surgery is three weeks from now at a private hospital in Perth. I've chosen my implant, Cochlear Nucleus and have chosen some groovy zebra stripe covers for it.
Waiting for the MRI

Sunday 25 September 2011

"How are the kids doing?"

The question I'm most asked since I went deaf is "how are the kids going?"
My children are 6 years old and 11 years old, both boys. The youngest responded quickly to my deafness by learing some signs from AUSLAN (Australian sign language) using an app I found on itunes. He is a very expressive child and while I can't lip read him (he is missing three top teeth) I can usually work out what he is communicating just by his signs, facial expression and body language. He is also very affectionate and gives me many kisses and cuddles. He has, however, started to bite his nails. I assume this is a symptom of stress and it concerns me.
The eldest has withdrawn from me. He is a quiet child at the best of times! He doesn't sign (only one: food) and will only write things down when he REALLY needs to communicate with me. He hates to go out in public with me as he hates it when I don't hear people and he thinks they think I'm rude.
I can't help him as much with his homework so he has had to manage this on his own, this is a little stressful as he is in his last year of primary school.
I understand now how difficult it is for deaf people to maintain relationships with people who are hearing, even family members.
So, the kids are OK, but they would be better if mum could hear them.

Friday 23 September 2011

Where to from here?

I received a letter in the mail yesterday from my audiologist advising that I meet the criteria for a cochlear implant in my left ear (my right ear didn't meet the criteria and it's feeling rejected). I've since done a bit of research on the success rate of cochlear implants and it seems that this could be a good option for me. I'm not keen on having a device put in my head and wearing the processor behind my ear for the rest of my life, but I'm also keen to hear my kids laugh again and my husband say "I love you".
I still have my speech and I still have a "sound memory", so the sooner I can have the implant, the sooner my brain can start adjusting. I have appointments next week to determine my surgery date and which implant I'll get but at this stage it looks like I'm getting the Freedom from Cochlear as the Nucleus has been recalled.
I know I'll never get my hearing back but I'm looking forward to being a part of the hearing community again.

Wednesday 21 September 2011

Returning to Work

Today was my first day back at work at West Coast Institute of Training (tertiary).  I'm not able to drive until my vertigo clears (and I have at least 40% hearing according to WA law) so I rode my bike to work. It's a 45 minute trip and it was windy and wild and a bit rainy too. I can't say I enjoyed the ride! 
My first task after returning to work after six weeks on sick leave, was to turn my desk around to face the office. This allows me to see who is coming and going and stops people sneaking up on me. Then I said goodbye to my phone, I've had that phone for fifteen years, and hope one day I'll be able to use it again. I have an amazing work team, seven intelligent, dynamic women who I love and adore. They seem unfazed by the changes they have had to make for my hearing loss and happily type meeting conversations on my Ipad (using a wireless keyboard) or face me to aid lipreading. Life would be so much more difficult without them. They even made me a 'welcome back' to work sign and had fresh flowers on my desk for when I arrived!

The Easy Parts: reading emails, working on documents, researching the internet, getting on with my work and not being distracted by office noise. Having my workplace happily accommodate my needs.

The Hard Parts: talking to more than one person at a time, saying hello to someone and then having to explain why I can't understand anything else they say. Not knowing why people are laughing. Even if they tell me afterwards, the moment has passed. Not knowing when I can speak and not talk over someone or interrupt. Not hearing the office chatter that I loved so much in my past life!

Sunday 18 September 2011

Party Hard!

I'm writing a bit bleary-eyed today because I went to my first "post hearing loss" party last night. It was a friend's 50th birthday party and wow, did he and his wife put on a great party. Food, wine, music, open fire and plenty of people to enjoy it. Luckily, I only knew a few people there and they were close friends, all aware of my hearing impairment. This meant I didn't have to make small talk and pretend I had any idea what people were talking about on too many occasions. The girlfriends I hung around with were easy to lip-read. Their husbands on the other hand both had heavy Irish accents and I couldn't lip-read them to save my life. Does that make sense? No, not really. The difficult part of the night was when they got the music going and everybody was dancing. I could hear a muffled base beat but I had no idea what the song was and wasn't really inspired to dance. I tried, but felt awkward. I really miss music.

Friday 16 September 2011

The Frustrating Bits

I have only just joined the world of the profoundly deaf. Up to this point I had enough hearing in my left ear to get by in the hearing world, most of the time without people even knowing I had a hearing impairment. Now, things are different. I'm not part of the hearing world but I'm not part of the deaf world either, I don't know any deaf people who live in Perth. That is the most frustrating bit, trying to establish a new identity, a sense of belonging.

This is what I've had to do to connect with my family and friends: I've had to learn to lipread very quickly, this is easy if I know the person well and I know the topic we are talking about. I've got notepads all over the house, my eldest son (11 years) and husband (can't mention his age) use these but it can be frustrating for them writing everything down. My youngest son (6 years) uses a combination of AUSLAN signs and his own made up signs. He also writes things down when the situation requires it. He knows I'm deaf but that doesn't stop him from chatting away, I have no idea what he is talking about but I love that he does that. Being a mum I know how to pretend I'm listening when I'm really not, this skill has come in very handy but doesn't work on the eldest, he's on to me. I use my phone to text my friends. Most people have a mobile phone these days so that part is easy.
My all-time favourite communication tool? The Ipad (free plug for Apple). I carry it around with me everywhere (with a wireless keyboard) and use a number of different apps like notebook and whiteboard. This has been great in cafes, when friends come over to visit, and during medical appointments. The other good thing is I can read over the conversation later if needed (my memory is not that good since my hearing went). Saving up for the iphone next!!

The Day it All Happened

10th August 2011: I'd taken the day off work as I didn't feel well and I had been having dizzy spells for a few days. I'd complained to my husband that when he talked to me he sounded like he was under the water. The kids went off to school, my husband left for work, and I took some time to relax. I took a few phone calls on my mobile but it was getting hard to hear people talking. Just after lunch I sat down to watch TV but couldn't hear speech clearly so I had to turn it off. The dizzy spells were getting worse and I was feeling really unwell so I went to bed. When the kids arrived home at 3pm I couldn't hear them talking and the dizziness was so severe I couldn't move from my bed. That's when we went to the hospital. I was first diagnosed with labyrinthitis but after several weeks I saw a specialist who informed me that my hearing loss was permanent, possibly due to hereditary factors (my uncle and cousin were born with complete hearing loss). At this point, I leave the doctor's surgery and go shopping.