I’ve been blind for10 years, here’s what I’ve learnt

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?

XOXO

 

Arrivederci Nonna, sorry i’m emotionally stunted!

On Monday 12 August 2019 my Nonna (Mum’s Mum) died aged 96. We knew it was coming, she’d been going “downhill” for some time. This really irritated her, she hated not having control (remind you of anyone?).Frankly, I think she couldn’t wait to go.

Perhaps this is why Iam able to keep it together. Actually, the fact that I have, is astonishing. Not only to me, but seemingly my friends and family too. I’m being watched like a time bomb about to go off.

You see, I am Nonna’s namesake an until I moved out of home in 2016 I lived next door to her every day of my life. I am also (I think) the only one of her 9 grandchildren who speaks fluent (ish) Sicilian. This is not exactly my choice, I’m just the only one who couldn’t run away when she tried to make us learn. When I was about 11 she taught me a poem which is something about chestnuts and extortion. From that day on, literally everytime she saw me she asked if I still remembered it, and demanded a recital as proof. Nonna had a wicked sense of humour and I suspect she liked seeing me squirm. One of the last things I think I said to her was this friggin poem. Plus, as much as I hate to admit it,Nonna and I are frighteningly alike.

Long story short, everyone assumed we had a bond.

Ironically, assuming I’d be sad annoys me because to me it implies that I lack bravery. Ordinarily this implication would be warmly welcomed, such is my aversion to that word, which is used to describe disabled people just for existing. How curious.

If I’m honest, I am quite emotionally stunted. I really struggle with expressing my feelings about pretty much anything real. And if I do accidently share, I’ll hate myself for weeks afterward.

Mainly I think this is because I hate appearing vulnerable. In my experience it leads to pity (coupled with society’s feeling of vindication pertaining to the quality of my life), judgement, or worst of all it often invites the fixers and/or devil’s Advocates. For the record, I think I’m one of these and it’s a habit I’m trying to break.

I can’t understand why, just this once I can’t let my guard down. She was the last grandparent standing for god sake! Am I a bitch?

At the funeral, a worried onlooker asked me how I was, adding that she’d been concerned for me for ages. Ever at the ready to deflect a possible show of emotion I replied (way too loudly), “I’m totally fine, I’m not the one in the coffin.” Possibly I could have chosen my words a bit more tactfully.

Conversely, every time I read Harry Potter and The Deathly Hallows or watch the movie, I cry hysterically when SPOILER ALERT, Dobby the House Elf is murdered, and I don’t care who sees me. He’s a fictional character who isn’t even human.

Last week I gave a guest lecture on blogging at Curtin University. During the Q&A someone asked me if there was anything I would never blog about. I answered by telling them exactly what it was, knowing full well I was wearing a recording device and sitting in a theatre full of people. It’s something that pretty much everyone knows (or has guessed) about me and its actually not very interesting. I’ll happily tell you over coffee, but I can’t commit it to paper…err screen. What does that say about me?

Shit! I had originally intended to write an ode to Nonna. Told you I am emotionally stunted.

Arrivederci Nonna. Thanks for the memories. Please excuse me if I never speak  of this post again though, I may have said too much.

XOXO

 

 

An open letter to Medical Professionals everywhere

What’s up Doc/other?

 

I get that you studied for many years to get your degree, and its super annoying when unqualified “experts” tell you how to do your job. Hell, I’ve only got a Certificate III in Business and a half-completed Diploma of Marketing from TAFE and I hate being told I’m wrong. But when it comes to my body, trust me, I know what I’m talking about.

I have a fabulous GP. She’s thorough, open-minded and she always complements me on my outfit so clearly, she’s switched on. but unfortunately, I don’t get to choose when symptoms hit, and although I often hang on for longer than I should, she is unavailable. Sometimes I can’t get an appointment at my regular surgery at all. This is where you come in,

It’s hard enough visiting a new/different practitioner as it is. There’s the indignity of having to sit there while questions                                   about me are asked to whoever I’m with about how I’m feeling, or whether it hurts me if he/she does this or that. Because, the expectation is I don’t understand basic speech.

Then the humiliation of having to answer intrusive and unrelated questions about everything under the sun, because you’ve just discovered I have a rare condition you’ve never come across before. I’m here for an ear infection, its fairly run of the mill, no extra information required. stop asking me about reproduction. If you have questions, ask Doctor Google, that’s what everyone else does!

As you are in somewhat of a position of power, I feel I must endure the interrogation, lest I come off as difficult, rude or as you suspected earlier, completely clueless. I am none of the above by the way.

It reminds me of the many times as a child I was duped into being the live specimen (often in various stages of undress) paraded before groups of student doctors all in the name of education. While being completely ignored as a person I might add.

All you need to know is that my ear hurts, I am very prone to infection, and this is not my first rodeo.

Therefore (and especially if you don’t know about my condition), try listening to me when I tell you how things have been treated in the past. When I tell you, I need the super strong stuff, don’t tell me I’m wrong. Its antibiotics I’m after not Meth, and I’m not taking it for fun.

I understand you have a duty of care, and my body freaks you out. But, please give me the benefit of your doubt, it’ll save me doing this all over again next week. Plus, you might learn something.

Either that, or you can pay the bills!

 

XOXO

 

Eye roll please: I went to the Polo

So, this happened months ago, but somehow, I won tickets to the Polo in the Valley at Duncraig Stud. Polo as in men with sticks riding horses on a field, not wrestling each other in the water (thankfully for the horses).

I imagined this to be a very swanky affair, I mean, Lady Kitty Spencer was to be in attendance (she’s a model and the niece of Princess Di in case you don’t know), AND a former Channel Seven Weather Girl for goodness sake!

At first, I wasn’t going to go, assuming that I would never fit in among all the beautiful people.  It was a throwback to my high school days when I never dared interact with the “popular” girls, women who I have since learned are not so intimidating after all. Oh, and I had no knowledge of/ particular interest in the game of polo whatsoever. Spoiler alert, I still don’t.

Plus, I knew Damion wouldn’t be in it, “I don’t do posh, he reminded me. For the record, this is one of my favorite things about him.

In the end I did decide to go, and I’m glad I did. It’s awesome rolling up to a swish event and having your name on the VIP list or whatever list I was on). Especially being with the world’s best polo companion/my friend, the fabulous Annie. Day made right there!

We got into the marquee and I was nervous as usual., I expected raised pinkies attached to people drinking tea and eating cucumber sandwiches while calling each other “darling”, as far as the eye can see. What I got though, was a bunch of well-dressed bogans attempting to be seen while drinking copious amounts of alcohol and eating hot chips and sliders. This was much more my style. So clear was it that this was not your usual polo crowd, that they had a polo rules and etiquette book on the bar.  We were not in the marquee with Lady Kitty by the way.

Speaking of the bar, I am not usually a drinker, but I managed to drink so many champagnes and glasses of my new favourite drink, Pimms that although I was fine while there, I spent the entire night afterward throwing up. In my defence, I only weigh 45kg, so it was not like I really had to drink a lot. Secretly I am quite proud of that effort though, but only because it gave me the chance to slur the phrase “I am never drinking again,” which seems to be a rite of passage that I missed as an adolescent. For the record, I have not had a sip of alcohol since.

As for the actual game, I am sorry to say I didn’t see very much of it, and not just because I a legally blind. However, I did enjoy what I did see. That game is fast and mighty impressive. I did learn that for some reason every match is preceded by a Pipe band (I do love the bagpipes) and begins with someone throwing the ball into the field. In the game I watched, that honour was given to (you guessed it), Lady Kitty Spencer. Also, although the game is played on horseback, the horses are known as ponies. I wish I could have looked so elegant the one time I’ve ever been on a pony.

As we waited for the taxi to take us home, Annie and I commented to each other how surprisingly unpretentious the day had been. Then we heard a random woman say to her companion, “OMG the lighting in there was terrible. I haven’t been able to get a good shot for Facebook all day.” My eyes rolled so far back in my head that for a minute, I worried they might drop out of my bottom.

XOXO

 

 

Nope, still no maternal instinct!

At the age of 11, I saw the movie Charlotte’s Web (the one where Debbie Reynolds is the voice of Charlotte) for the very first time. Not long after that, I saw the movie Babe and from there on in, I wanted a piglet to love and cherish. Preferably one with the gift of speech.

I have lived in suburbia my entire 34 years of existence and because of this, and various other practical (yet deeply unfair) reasons, the longing for my very own piggy chum has hither to, remained unrequited. Or has it?

As you might remember from previous blog posts, I have been eagerly awaiting the arrival of my nephew. For the record, no one actually new he would be a boy, except me. I have been saying it all along.   I am very excited to report that six weeks ago (at time of writing) the esteemed David Geoffrey was born. Lucky for him he bears no resemblance to his Aunty Nina, although (at least for the time being) we are almost the same height.

Anyway a few weeks ago, ironically whilst tucking into Mum’s roast pork (what can I say? I really love pigs) the family and I began a conversation about Chinese Star Signs. I was born in 1984, which makes me a rat. 2019 is the year of the pig. My darling nephew is the piglet I have always wanted! Using Charlotte’s Web as the metaphor, does that make me Templeton? Not sure how I feel about that.

I can now admit that David’s impending arrival did fill me with a slight sense of fear. I was afraid that being in such close contact with him so often would result in an overwhelming urge for me to have children of my own, an urge I have never really had to date. It did not, thank goodness.

It is not that I do not like kids. On the contrary, I love David and I will never pass up the opportunity for a cuddle with him. I am just not maternal.

This gives me mixed feelings. On the one hand, guilt because I will not make Damion a Daddy, provide my parents with extra grandchildren or cousins for David. On the other hand resentment because I am vindicating those who feel (and are not shy in telling me), that as a disabled woman I have no business being a mother.    If I am honest this is the stronger of the two feelings, but I am not about to get pregnant out of spite!

As it turns out, one of my personal inspirations, Jane Austen was herself, a proud (and childless) Aunty who (from what I have read) chose to be so in spite of or perhaps because of societal opinions. I suspect the criticism she received was the opposite to mine though.

PerhapsJane and I have more in common than just a birthdate and a love of writing.

XOXO

No, you can not see my tits!

So here I am, outside work waiting for my taxi when a woman who happened to be going past, stopped to ask if I needed any help. I thanked her, said I was all-good and wished her a good evening. But she did not move.

 

“I wish I could get away with one of those,” she said, pointing to my walking frame. I just smiled. She obviously took this as a good sign and went on, “what’s wrong with your legs?” She asked. “They’re wonky,” I replied. “I can see that,” she said. “What about the feet?” She enquired. “They’re wonky too,” I answered.

 

Now I really wanted her to go away, but of course she did not. Instead she stood there staring at my bare legs (I was wearing a skirt), then down to my boot-clad feet. “Can I see them?” She asked. I said no. Apparently, this was unacceptable, as she seemed very affronted as she marched off.

 

Astoundingly, that was not the first time I have been asked to remove my shoes and socks in public so a curious person can inspect my feet. It happened at work once years ago too. When I declined to go barefoot in the middle of the office, the reaction was much the same.

 

To some, the request to remove shoes may not be a big one, but to me it is. We all have aspects of our bodies that we would prefer not to flaunt, and this is mine. In addition, really, why should I?  My disability, no matter how visible does not make me a public spectacle.

 

What you are asking, (especially when no one else is doing it, or I do not know you) is the equivalent of “show us your tits,” and I am not about to do that either.

 

While I am on the subject, keep your hands off the goods. It might surprise you but I am not a fan of curiosity Fuelled poking and feeling or patronising high fives. Head pats or pinches of the cheek. If you think my calves are skinny, head is huge, hair is fake, my bra stuffed or whatever else, show some decorum and keep it to yourself!

 

I am only human. Would you just cop it on the chin?

If I am expected to use my manners, so should you!

XOXO

Not as young as I used to be

I am vertically challenged, standing a hulking 4 foot nine inches to be exact.   I never really had any hope of being tall, my genes and the IP saw to that.

When I had my shunt inserted at six months old the surgeons inserted tubing so long that it would have served me well if I had grown to be a giant, so not everyone thought all hope was lost. Obviously, I am not a giant though, (in fact, I am technically a dwarf. I was reminded recently (by people not expecting to see it in a CT scan) that said tubing still floats in my abdomen in a big coil. Just in case my growth spirt ever comes.

My small frame has often caused others to warn me to “always carry ID Nina; No one is ever going to believe you are over 18.”

I took this on-board. To this day, I still carry my 18 plus card (I am 34) just in case. To my dismay, it has been a very, very long time since I have been “carded”. Despite drinking cocktails in various pubs and clubs while speaking very loudly about my upcoming year twelve exams. Damn it!

Until recently, this fact has perplexed me; such was my belief of my youthful visage.

I was hanging out with Miss 6 who asked me how old I am. I stupidly invited her to guess and to my horror, she guessed forty. I managed to convince myself that this is the only number she knew (it is not) and posed the question to her twin brother. He guessed that I was eight, because I am only slightly taller than he is. I can live with that, although if true it could raise a few questions for Damion.

Feeling full of youthful exuberance, I found myself seated next to a little boy I did not know at a lunch. We got to chatting and I asked him how old he is. He is five. He then asked me how old I am and I invited him to guess.

He gave me an appraisal and after asking, “are you younger than Grandpa?” pronounced that I am forty-five. Convinced that he had misunderstood the purpose of the game, I asked him again. This time he said fifty. I stopped playing.

Often, a kid will age you based on your height in comparison to others. For instance, pre-primary kids are usually the littlest at school.

I have often assumed that the reason I get on so well with kids, is that as a short arse they think I am one of them and can relate. Apparently not.

So funny how oftentimes only the kids recognise that I am a grown up.