On 16 September 2009 I had a Nanna nap and woke up blind.
I had been experiencing excrutiating headaches (and vomiting) for about a week,which my GP at the time couldn’t identify the cause of. When my eyesight suddenly disappeared, he thankfully took me seriously and referred me to an eye specialist who sent me to the ED that very afternoon.
Turns out the shunt I had inserted when I was six-months old to treat my Hydrocephalus, (a constant build up of fluid in the head) had blocked, causing too much pressure and squashing my optic nerve. Hence the headaches, vomiting and eyesight loss.
Luckily the problem was easily fixed with a simple operation to replace the shunt and remove the pressure. Unluckily, they botched it, so I had a mini-stroke (not a fun way to spend a Saturday
night), which took the tiny amount of eyesight I had regained, with the added bonus of my hearing. Bugger!
I don’t have much memory of that night now. I do however remember being totally conscious, but not in pain and being able (initially) to hear the questions “do you know where you are?” and “who is the Prime Minister?” I knew the answers, but I just couldn’t convert the thoughts to speech. Instead, I had bouts of maniacal laughter. It wore off after approximately eight quite frightning and extremely frustrating hours.
Having to endure the same operation twice in a month was hard, did I mention I had a fear of surgery then? By now my body had been through the wringer and I was physically and emotionally exhausted. The going blind ordeal, and the subsequent treatment for it’s side effects, went on for 18 months.
Looking back, the worst thingabout it wasn’t the physical aspect (although that sucked), I was no stranger to hospitals and body malfunctions. Rather my mental health. I was NEVER, EVER left alone to process my thoughts and feelings, or rest for that matter. For the record;I don’t care how much you insist that you don’t mind if I nod off, I don’t want you watching me sleep, its wierdp! I realise people mean well, but is visiting someone in hospital, the right time to introduce them to randoms or your new beau for the first time? I think not. Also FYI, my sick bed is not a crèche. I felt like a sideshow attraction. Nowadays I have a strictly no visitors policy and I don’t usually tell anyone a procedure is looming.
Ittook awhile to adjust to my sudden loss of sight. After the stroke there was a period where I had no vision at all, which is very disorientating. At this time I couldn’t do much for myself, even get dressed or locate my food on a plate. I relied completely on others. This is when my sense of self-worth was at its lowest and my depression began. There were a lot of tantrums behind closed doors, but in company I was the life of the party. I remember telling my friend Peter about my stroke as if I was re-telling an amusing story I’d heard on the radio. He accused me of not taking it seriously. What?!
I started seeing a counsellor for the first time not long after that.
Basically I was pissed that after everything I already had(overall muscle weakness, wobbly legs and a Picasso-esque visage), I was getting even more. I began mourning the life I assumed I had lost. Plus, the healing process was slow, and the prospect of starting again was daunting.
Ten years on, things look quite different. I am still legally blind, hearing impaired (I wear both a hearing-aid and cochlear implant), and now I walk with a walking frame. Occasionally I do still have down periods and when that happens, I check-in with my psychologist to talk it out. But life is a million times better these days.
I now have a much better and more fulfilling job, I live independently in an inner-city apartment I bought myself and I have the world’s best boyfriend, who lives with me. Never dated at all before going blind. Generally, life has never been busier or more fun. There’s no inspiring or ground-breaking story as to how I got here though, most of it is just luck and lots of trial and error. That and the fact that I finally realised the perks that go with embracing/accepting my disability, thus I now gladly ask for and accept help when I need it without feeling inferior. This is possibly the biggest lesson learned.
Sure, there are some things such as using technology, socialising and watching stuff which is harder/less enjoyable now and my lack of eyesight makes commuting from A to B alone, difficult at times. When I reflect on how easy/more fulfilling some things were then and how many things I could have done but didn’t, it irritates me no end. So I have adopted a ‘now or never’ philosophy. This could explain attempting activities such as skydiving and abseiling skyscrapers, which never interested me before.
I honestly can’t think of a way to end this ramble without it venturing into the realms of inspiration porn. So in conclusion, here are some of the most frequently asked questions I get when people find out I haven’t always been blind. Enjoy!
Do you still dream in colour?
Yes, when the dream warrants it.
What’s the most annoying thing about your blindness?
Loosing things that are right in front of me. Not being able to access information I need because it doesn’t come in digital format or because a website is not compatible with my screen reader. Never being quite sure if my outfit really does make me look stylish or just tragic. Not being able to recognise people or see them approaching.
What’s the best thing about being blind?
It’s easier to feign bravery when you can’t see what you are doing. I don’t notice when people stare/point at me. I can pretend I look like a supermodel, and everyone else looks like one to me too.
How much can you see?
I can only see what I am directly facing and this is like looking through EXTREMELY dirty sun glasses. I have no peripheral vision so my field of vision is limited. I.E. if you are standing beside me and you want me to notice you, tell me you are there, or you could be there for ages.
Can you still have sex?
Yes. Why, are you offering?