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

 

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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.

33, The Year That Was

Tomorrow, the sixteenth of December 2018 is my thirty-fourth birthday and unlike most adults I know, I am really looking forward to it.

Being the constant self-evaluator that I am, I find myself in a reflective mood. I feel the need to look back on the past year, see what I have learned and set some goals for the year ahead, (most of which I know I will not keep).

This year, I gained a Sister. No, Mum and Dad have not had another baby , my brother finally put a ring on it and he and Amy got married. Do not ask me how the wedding was though because I could not tell you. For the first and to date only time ever, my Cochlear Implant and my Hearing Aid both died at the exact same (and most inconvenient) time, so although I was there, I missed everything. Having hearing loss is definitely worse than impaired vision.

The worst thing is, i look terrible when I cry…Like way worse than normal.

Once I realized I would not be able to communicate, hear the speeches or participate at all, naturally I burst into tears. at that exact time the photographer chose to take one of the only photographs of me from the day. It is not pretty.

Damion and I went on our first holiday together. We had a whirlwind visit to Melbourne, where somehow I found myself at the Melbourne Cricket Ground watching  what would turn out to be a Grand Final prebiew, between the West Coast Eagles and The Collingwood Magpies. Damion is still trying to convert me to the dark side (AKA WCE) but I am sticking with my Fremantle Dockers thank you very much!

To Be Honest, I was a bit apprehensive about this trip because I was not sure how we would be, not being able to escape each other for four entire days. Turns out, despite the various bouts of taxi drama and getting lost constantly, it was the most relaxing holiday I have ever been on.

A good thing too, as not long after arriving home, we found out that Damion has Melenoma on his lung, meaning he would need to start chemo in ernest. Up until then, I had been managing my depression/anxiety quite well. But this tipped me over the edge (not literally though thank goodness). Obviously, I was devastated by the prospect of loosing Damion, but with added bonus guilt about (again) making it all about me. I decided to tackle it head on and have been seeing my psychologist again regularly. It has really helped, as has the constant support from our friends and family. Not to mention my trusty meds.

I am a person who talks a lot. But, not really about my feelings or anything that might make me feel or appear vulnerable. With all this going on, I had to break this rule. Talking actually does help sort things out and put things in perspective. It does depend on who you choose to confide in though.

Damion has taken it all in his stride and as always, has been a pillar of strength for us all.

For the record, he has just had his three-month review and his cancer (which was covering both of his lungs), is already 60 per cent gone. It seems there is a God afterall.

On a side note. It is official, this one is a keeper!

This year I also tried indoor skydiving and frankly, I will not be doing it again, it scared the shit out of me. Jumping out of a plane at 14,000 feet is way better. It also has the added bonus of giving you a bit more privacy in which to panic. I got a notification this week that the Urban Descent registrations open soon. I am very seriously considering signing up, in the hope I will get to Zipline the 160 metres down the QV1 building in the Perth CBD. I have abseiled it twice before but I would love to compare the two experiences.

I have recently become involved in various initiatives to promote disabled people in the workforce, educate people on the benefits of employing us, and how to go about it. I absolutely love doing this. It is, at last a real opportunity to make an actual difference as opposed to just talking about making one.

Turns out, job searching is far more difficult than I thought. Especially when you are disabled. Makes me super grateful for the more than fourteen years (and counting) I have had where I am. Speaking of which, it sounds like I am sucking up (I am not. I do not think they read my blog), but the team I work with is amazing. They go above and beyond to ensure I can fully participate/meaningfully contribute to everything, and they do it without alterior motives. This is very rare, both in and out of the workforce.

It has guilted me into realising that I seriously need to do something about my daffiness and my lack of spacial/environmental awareness. Improving this is resolution number one for the new year.

As far as writing/blogging goes, this year has been a good one. I have been published by a few new publications (including MANAMIA, which I have been trying to get into for ages). I have had a couple of invitations from publications to submit work, which I am still working on and one of my rants is due to feature in an upcoming edition of The Big Issue Australia. I still have no idea why people want to read my waffle, but I will take it while I can get it.

Like sands through the hourglass, so was the year in my life.

XOXO

My Book Pitch

I am due to become an aunty soon, and upon hearing the news, I started to reflect on what it is that I want to be able to teach my new niece or nephew. After thinking about it long and hard, I have come up with absolutely nothing.

There is the old chestnut, “you can be/do anything you dream of,” but that’s been done, and let’s be honest, most children already think that anyway.

If you ask an average kid what they want to be when they grow up, chances are they’ll tell you they want to be a firefighter, an astronaut and a wizard all at once. In fact, I posed this very question to a 3 year-old I know recently and he told me he wanted to be a dinosaur. Children see nothing as impossible.

As a small child I thought this too. I expected I could climb mountains. Not literally of course, but as a littlie the prospect of climbing a set of stairs seemed almost the same.

 

However, as a disabled child, I found this to be impossible. Not because it was, but because I was never allowed to attempt it by myself. So, I “learned” that this, and many tasks like it were simply not something I could do. Until blissful adulthood, when as master of my own destiny, I gave it a go and surprised myself.

Granted, there are indeed things I can’t do, and I found that out the hard way. But I survived the attempts (albeit with a few bumps and bruises in some cases), and now I know. This means I have more scope to make decisions on how to tackle other things. It is empowering.

I guess the conclusion I have come to then, is that its not the new baby who I need to impart my wisdom on. It’s their parents.

Along with about 99% of the population (I’m assuming) I have a long-held desire to write a book. The problem is, that takes time that I just don’t have. Plus, I am only an expert on myself (which isn’t very interesting), and I don’t have enough expertise on anything else (or the motivation to get some), to be able to write a book about it. Except for Harry Potter that is. But I think JK Rowling has already got that covered.

I do have an idea for a children’s book though.

Its about Molly. She’s not like the other helicopters who live on the airfield. In fact, She’s a clever forklift (who picks things up easily). Molly has a best friend, Freddie the go-cart, who dreams of being a muscle car when he grows up.

Molly’s parents, Mister and Missus Coddled (a pair of middle-aged helicopters) love their daughter very much and recognise her superior intellect, but despite this they can’t seem to be able to let her experience life for herself.

Now, fiction and writing for children is usually not my forte (some might say it still isn’t). So, I have no idea what my characters should do, or how to make them do it.

Although, there was this one time when my brother and I were playing “too near” to a pond and the adult who was supervising us spent so much energy reminding us to be careful and shielding us from the possibility of falling in. That they weren’t watching where they were walking and fell in themselves. Would that work?

I am hoping that my book, which I envisage as a picture book, (even though I’m blind and can’t draw) becomes a regular fixture in the bedtime rotation of children across the country, (I have no ambition for world domination). That way, parents, like my brother might pick up on a few hints. You are welcome little ones.

So, who wants to publish me?

XOXO