“What’s wrong?” asked my customer as I covered one eye, then the other, and stared at her in disbelief.
“Your head is missing,” I said anxiously. I slumped on the stool behind the counter of my fashion boutique and placed my palm over my left eye. Sure enough, there was a large black area at the top of my vision in my right eye.
A phone call to an ophthalmologist’s office started the ball rolling and a dye test to look at the retina was performed that afternoon. That night I couldn’t sleep with worry, petrified that I might go blind. The eye specialist confirmed that there was damage to the retina and he wasn’t sure exactly what the cause was – a virus, perhaps? He stressed that it could happen again and cautioned me to keep my immune system strong. I was given a dose of antibiotics and told to rest.
That was in 1986. I was 36 years old, married with three children and working full time. While it didn’t take long for me to grow accustomed to my vision impairment, the shock of partially losing my sight made me rethink my life, and I left my marriageMother-In-Law! Couple Kept Grudges And He Died!. Read more ... » of 19 years. Moving to northern New South Wales in 1990 gave me the chance to experience living in a small community. Perhaps it was the pressure of a new job, a new relationship, and raising a family that took their toll, but by 1993 the vision in my right eye had become more cloudy and blurry. The specialist asked me if I’d ever been to the Wheat Belt in America, as the scars in my retina were similar to a disease from that area. I hadn’t, and so we remained in the dark about what was causing my loss of vision. But I did notice that I was often tired and found it an effort to keep my head upright. I wanted to sleep all the time.
Time passed. In 1995 my new husband and I bought a small yacht and were preparing it to become our permanent home when I realised the vision in my left eye had changed.
I’d been cat sitting and the owner’s relatives were ophthalmologists who had recently been to a conference on the disease toxoplasmosis. They thought I could have it. A trip to a Brisbane eye specialist revealed that toxoplasmosis was almost a certainty and, moreover, that I had lost half the visual field in my left eye.
What did it all mean? I was asked if I’d had contact with cats, which, of course, I had – I always had a cat draped around my neck as a kid.
Cats, as it turns out, are one of the carriers of the Toxoplasma gondii parasite, which they spread through their faeces. When the parasite becomes active it causes inflammation in muscles or tissue. In my case, the parasite settled in the retina, where it was damaging cells and slowly eroding my vision. I digested this information and discovered there was little I could do while the toxoplasmosis was latent but keep healthy and strong.
I knew I wasn’t 100% fit as we cruised up the Queensland coast in 1995. I felt really low on energy, but I put this down to the emotional upheaval of leaving my teenage children and learning new life skills.
At the southern end of the Whitsundays lies the idyllic hideaway of Goldsmith Island. As we traversed the golden sandy bay, I bent down to pick up shells. Each time I thought I was about to clasp one it would disappear. With a sense of dread, I placed my palm over my right eye. I had no vision in my left eye. Panicking, I tried again and again to look at the yacht bobbing on anchor, but could only see black blobs through my left eye.
That day, we contacted my eye specialist in Brisbane by sea phone and made an appointment for me to see a specialist in Mackay a week later. The unstable weather delayed us, but finally we arrived at Airlie Beach, where it seemed the entire yachting community knew about my plight. As we walked down the street I kept bumping into letter boxes and phone booths, apologising profusely as I tripped and stumbled. Deep down, I knew that this was a really serious situation. Instead of colour, I was seeing everything in black-and-white; glare caused unbearable sharp pains in my eyes.
When the specialist informed me that I’d lost the central sight in my left eye and that it was unlikely to return, I burst into tears and returned to Airlie Beach traumatised. A friend had to crew for me on our journey back to Brisbane. I could still handle the head sail but had to relinquish cutting the vegetables, as my husband and our friend were convinced I would spear one of my fingers or take out their eyes.
A few months later, my husband and I built a house on an island in Moreton Bay, where I hoped to put my vision problems to rest forever. However, my disease became active again that year, and again in 2000, 2003 and 2004 – at which point my eye specialist firmly encouraged me to “sit under a palm tree and learn floral arrangement”.
I’ve taken his words seriously and have learnt not only to relax more, but also to monitor and manage my eye health. I regularly use the Amsler recording graph to monitor my areas of lost sight and to check on the good vision in each eye.
The damaged areas show up as black blobs on the graph; if these change shape, I know the disease is active and immediately visit my ophthalmic physician and surgeon. These recurring episodes can leave a sufferer feeling depleted for up to six weeks. I tend to recover by sleeping as much as possible, as the only available treatment is a prescription of triple antibiotics to minimise the damage.
These days, I occasionally suffer migraines, a result from straining my eyes when reading and writing, but I feel very lucky to still be able to read and drive. And, after all these years, I’ve realised my dream of living by the sea and writing.
I know now that it’s up to me to manage my eye disease. I’m the only one who puts pressure on myself and I’ve learnt that life is richer if I just take each day as it comes.
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