Back from the brink!

I was living in Sydney, worked full time, and was adjusting to the empty nest syndrome after my son had recently moved out of home. For the last three years I had spent alternate weekends doing the mad Friday afternoon dash up and down the freeway between Sydney and Wagga to visit my partner who lived and worked in that area.

I ached all over, my tummy was unsettled and I had a massive headache but headed off anyway arriving around 10pm and went to bed shortly after hoping to catch a good night’s sleep and feel better in the morning. As the day progressed my headache got worse, my neck was stiff and light hurt my eyes & I was unable to lift my head off the pillow or get out of bed. I simply went to sleep before lunch on Sunday and woke up 10 days later in the Hospital’s Intensive Care Unit and life as I knew it, had gone.

After speaking to my Neurologist my family prepared themselves for possible loss of life, brain damage or at best, loss of limbs or digits, and/or hearing and sight loss due to the excessive pressure building up around the brain and spinal cord. Finally, the disease was recognized, I had meningitis. Antibiotics were started and my condition improved and I woke up 10 days later to find I was now deaf and I had lost the sight in my left eye. I thought the hospital staff were over reacting when I asked to get out of bed only to discover I couldn’t stand or walk without assistance & I spent the next few weeks learning how to stand with the support of a frame and walk all over again. I moved into rehab two weeks later, but begged my family to take me home, I wanted the clock to wind back and my life to go back to normal. After 5 weeks in hospital I was eager to be discharged and thought nothing of lying to my doctors so they would let me go home. My doctors told me I would need rehab for some time and were reluctant to let me return to my former life as it was too risky so I stayed in Wagga with my partner Pete where I slowly regained my strength and mobility and learnt how to walk and adjust to my condition.

After a lifetime of living in a normal hearing and sight-seeing world this was scary, isolating and very lonely and I was angry and depressed and cried at the drop of a hat. I couldn’t have a conversation with my children or partner, couldn’t hear or see the TV, use a telephone, hear the doorbell or read a book or magazine as the writing was too small. I was desperate to communicate with people again and until I could figure out a way to do this easily I found a whiteboard a quick and effective way to communicate with family, friends and medical staff and carried it with me everywhere.

My partner and wonderful children have been my staunch supporters over the last year and I couldn’t have done this without them. My family & friends called regularly and my work colleagues sent flowers and cards with photos carrying messages of support often and funny emails keeping me up to date with all the office gossip.

Gradually I learned to source out and utilize several tools to combat my lack of vision such as a large magnifying cube, a Kindle, a large computer monitor, and an iPad where I could increase the font and see clearly without straining, these wonderful tools became a great source of comfort to me and my only form of communication.

I can’t begin to tell you how hard it was to work through the everyday hearing things we take for granted like hearing the alarm or doorbell ring, making a phone call, watching TV or hearing the microwave and although I’d learnt how to cope with most things around the house I was scared to go out & deal with these issues outside of home and began to isolate myself feeling safer in my own environment, only going out if Pete was with me.

Being deaf affects every area of your life and people often talk around you telling you tidbits of the conversation to be polite and leave you to piece the rest together. I found it upsetting and rude that people would talk about me and my health issues in front of me but to my partner & not to me.

I met a Professor in Sydney to discuss a Cochlear implant for my left ear. The nerves to my ear drum had been severed and I had no hearing in my left ear and less than 30% of natural hearing in my right. I had to undergo many tests to see where my current balance was coming from and thankfully all signals were coming from my right ear so inserting a Cochlear to my left was not going to affect nor reduce what balance I had learnt up to now. My operation was performed in Hornsby Hospital on September 26th 2012.

The day of my ‘switch on’ was nerve-racking and very emotional. I had been told not to expect much so when I heard Pete’s voice for the first time in many months it was a magical moment.

I concentrated every day and practiced every exercise I was given until I could hear well enough to hold a conversation, define accents and male/female voices and locate the direction of sound. I joined a local lip reading class and practiced repeating extracts from newspapers and children’s books and listened to the car radio until I could hear strong, speech sounds and pick up music beats.

My employer has been a great support since the day I took sick and late last year I returned to work part time and have been granted the privilege of working remotely between home and our local store and with the assistance of Job Access who visited my work site and suggested, assisted and funded many pieces of assistive listening and visionary equipment I was able to return to return to work on a full time basis with ease.

I am able to mix socially, read, swim, work and use a telephone. I can watch TV, participate in class events and go to the movies or listen to music, which in short means I can do almost everything I used to do. My cochlear has changed my life and I often co-ordinate the covers to match my outfits as my newest fashion accessory.

If you have been moved by Karen’s story, you can help make a difference by donating to Meningitis Centre Australia, to make people more aware of this disease. Go to Meningitis Centre Australia

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