It started before I was born. While pregnant with me in 1970, Mum visited a friend and later found out she had been exposed to Rubella or German measles. Immunisation was available but it was new and Mum wasn’t immunised — I don’t know why.
My birth and postnatal period were uneventful. However, when I was six months old, my dad noticed one of my eyes wasn’t tracking properly. At the age of two I had my first eye surgery. This was the first manifestation of congenital rubella syndrome, passed on to me from my mother in utero.
I have never had the sight in my left eye. It’s not been too much of an issue — I don’t know any different and I’ve adjusted. When I was young and learning about my sight, I thought people with two eyes could see two of everything. I was relieved to find that wasn’t true — how confusing would that be! But I looked, and still look, different. As a kid I was teased and bullied. I hated being different. But that’s kids for you, huh?
I tried to wear a prosthetic eye. When I was a young toddler, Dad would try to bribe me with icecream to wear it. It was hard, made of some sort of plastic or glass — uncomfortable to say the least! When I was four years old it popped out and I accidently ran over it with my yellow and red plastic bike. Much to my delight, hehe.
My mum passed away unexpectedly when I was eight years old. For years I felt so lost. At 17 I walked into a church and asked whoever was listening, why was my mum taken? Why do I look like I do? It’s not fair! Damn those bullies! Why wasn’t Mum around to protect me? Would she have anyway? She didn’t protect me from getting this damn virus! I have more memories of my eye, the optometrists and specialists’ appointments and running away from nurses in the hospital as well as the bullies, then I do of my mum.
I hated how I looked. I wanted to hide it, hide myself. The prosthetic eye helped, up to a point. But all the past surgeries had caused a lot of scarring so I had to have more surgery, in order to comfortably wear the prosthetic. But that failed too.
Finally, in my early 20s, I decided to have the eye removed. It was in the second year of my nursing training, during mid-term break. Crazy I know! Like I didn’t have enough on my plate. But after so many failed surgeries and constant pain, I decided enough was enough. Dad had to pay for my surgery because Accident Compensation Corporation (ACC) does not cover anything related to viruses. I’m so grateful to everything my dad has done for me over the years. He’s my hero.
‘The question has recently crossed my mind, why wasn’t Mum vaccinated? Was she afraid of what the vaccine would do to her? Was there not enough research? Had she heard horror stories about the vaccine? Or did she just simply think it wouldn’t happen to her? Sound familiar?’
I couldn’t wear a prosthesis for a while, so I wore tinted prescription glasses in my nursing lectures. I felt lost and broken. It didn’t make a lot of sense why I felt this way, after losing an eye that was useless to me. I was hiding myself again and feeling like I had somehow given up my last connection to my mum. Time moved on though. I processed it and slowly built up my confidence. I loved becoming a nurse. I knew all too well what being a patient felt like and having experienced such profound grief at an early age, I finally felt OK. I put all this life experience into my nursing, and I love what I do.
Now, 28 eye surgeries later, I’m in my 50s and the virus is still plaguing me. I have profound hearing loss in my left ear. It started about five years ago. Hearing aids don’t work anymore and it’s starting to affect my ability to communicate. Just ask my kids! It’s not just me who has to constantly repeat themselves in our household! A cochlear implant is out of the question as I don’t meet the criteria. So eventually I’ll have to give up my career. Well, retirement isn’t too far away. It’s scary stuff, though, to think I might one day be completely deaf and/or blind.
Why am I sharing my story? I mean let’s face it, as far as viruses go I got off pretty damn lightly! Blind and deaf on one side, a few annoying osteochondromas (benign bone tumours), early-onset arthritis and a lifetime of migraines. That’s not that bad, is it? They’re the cards I was dealt and I’ve adapted. It’s even got a fancy name — congenital rubella syndrome. And, yes, at some stage I might lose the rest of my vision or hearing. There’s not a lot I can do if that happens. It’s just what a virus does. It attacks your body, your immune system, your development. Hell, it changes your whole existence!
The question has recently crossed my mind, why wasn’t Mum vaccinated? Was she afraid of what the vaccine would do to her? Was there not enough research? Had she heard horror stories about the vaccine? Or did she just simply think it wouldn’t happen to her? Sound familiar?
It really doesn’t bother me anymore why Mum wasn’t vaccinated. She had her reasons and I respect that. But without sounding ungrateful, I suffered the consequences of Mum’s decision, as did my family. And that’s OK. She did what she thought was best at the time. But 50 years later, and people are still facing that same decision.
There will always be people who suffer side effects, adverse reactions, or even severe anaphylaxis from drugs, vaccines or food — even from one’s own immune system. No one can give a guarantee that vaccines are 100 per cent safe. I wish to take nothing away from those who have suffered as a result of a drug interaction. I guess what I am saying is there are two side to every story. This is my story.