I’m blessed.

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If I had a dollar…

What a gorgeous day! Both gorgeous weather-wise, and how I got to spend it. As I lay in bed that morning with the sun shining though my massive brunswick window while the breeze blew gently on my face, I felt excited to get out of bed, into my gym attire and to meet friends for coffee- my friend was waiting for me at the end of the drive! There, I had my first delicious mince tart of the season,and enjoyed a yum flat white whilst cuddling with an adorably chubby baby, before being chauffeured to gym (whilst sipping on an iced latte on the way) where I put those endorphins to work. I finished off my strenuous morning with a long and leisurely swim at the baths-where I got to soak up some warm vitamin D. Then I got to spend MORE time with MORE friends, doing some feel-good volunteering, eating sausages with too much (or the perfect amount?) sauce, and a modest selection of Aussie bikkies. All in all, I’d say that was a pretty good day, amIright?

All was well until I went to board my train home and was stopped by a well meaning officer saying he noticed I was wobbly as I was walking to the platform, and proceeded to ask me if I’d been drinking. It was at this point I had to tell him, “nope. I’ve a neurological disability” followed by a suitably awkward pause, some purposeful looking at the glorious scenery of said train station, after which he kindly offered his help if I needed. After he walked off, my nose started to sting- the way it always does before the tears start welling. How’s that? Such lovely day- friends, coffee, exercise, chocolate- ending up in tears in the train.

It got me thinking; I was so offended- as I always am- that I was presumed drunk and not disabled. But more than that, I had to admit to the fact I am disabled. This in conjunction with the fact that something so seemingly small, had the power to bring me from contented happiness to tears within seconds, made me so angry. I now realise, and not in a woe-is-me kind of way, but in a very academic sense, I don’t think I can really start to like myself-non circumstantially, nor based on anyone or anything around me, until I can proudly answer the inevitable question “Have you had a few?” with “nope. I have a neurological disability”, without any sense of offence or anger. Because no matter how hard I try to avoid it, when people see me in action, that question is bound to be asked. And when it is,  not if but when, I don’t want it to end in tears. Again.

Run Down

I’ve been looking through my notes on my computer, and came across my speech from back in January this year when I spoke at a meeting for a Neuromuscular Support Group I’m involved in. Thought it’d be a bit of a waste not to share further! I mean, it’s not completely up to date,  as I am now 26 and not 25, and have since moved out of home- thank God! But it’s a pretty good summary, if I do say so myself….  Continue reading

Alex Mac

New year- new computer. Ohhh but the year began t minus 9 months ago… I’m just anticipating 2017 with my new friend, Mac-Alex Mac (reference to circa 1990’s program, Alex Mack-what a babe, like my sexy new computer.)

alex mack

I’m super duper keen for 2017- I’m done with 2016. Premature, perhaps? I think this year has had quite a lot packed in, in a very different way to the five years or so prior- now I just want to relax and listen to some LPs in my new pad whilst writing on Alex (that may or may not have been the most wanky sentence ever to be uttered out of my fingers.)  I can’t wait to write; more than that, I can’t wait to be critiqued and to become better. See, with my art, it’s different. I didn’t like opening up such a personal part of me- made vulnerable and to be judged; I like that it’s mine, and it’s not made solely for an audience. With writing, I welcome that judgement- it is made to be read, and I think that comes hand in hand with judgement. Of course, all this is riding on a university acceptance…. I’ve set my sights rather high, so my confidence in that wavers frequently. Right now I’d say I’m at about an 8 out of 10… Glass Animals on the radio is helping though, as, obviously, is Alex. Dear, dear Alex.

UPDATE: a favourite friend of mine and has just left the country… sadface. On the bright side though, he has ever so generously gifted me (apart from the several hundred dollars spent on drinks, twas a bargain… but I’m starting to feel he got the better end of the deal, financially speaking) his entire bedroom suite! I desperately needed a bigger bed- have slept last few weeks soon a single, and every night, without fail, would fall into the adjacent wall, and wake up every morning with a new bruise. So his generosity has come at a rather perfect time.

 

Momentous

The last year has been pretty tough… It might be up there as one of the toughest of my life thus far. Hence, the pregnant gap in blog posts. I’ve been struggling with my diagnosis pretty hard for the past 18 months or so, and probably will be for the next several years… Slash, the rest of my life… short of a miraculous healing. Any who,  this last year has been full of ups and downs, but mostly downs. Which has sucked.

Aside from the massive physical impact this is turning out to have, it’s also been quite the whirlwind emotionally. And the struggle has definitely been tipping over into the emotional side of the spectrum recently- to the point where I had cried myself empty of tears and left numb to feeling any emotional extremities- whether happy or sad. This has been where the majority of my energy has been spent over these last few months.  So I’ve not been able to invest enough time or effort in much else. All in all, this left me feeling hopeless, directionless, and like a failure.

Notice the use of my past-tense form there? Something happened recently which has transformed my outlook on life. See, spiritually, I have a knowledge and a hope in God and His constant provision for me. But, to me, that is very separate from my feelings- which are at the mercy of the whims of this world, which inevitably will change.

However, this was all academic to me, and I was fed up with not enjoying anything at all- so I made an executive decision to change that. At this point, I knew it wasn’t what I was “supposed” to do, but as I said, I was just so numb I couldn’t care- I thought a really bad feeling was better than no feeling at all. Now, this wasn’t a rash decision either, I had thought and prayed about this a lot leading up to the execution. However, nothing had happened to deter me from my plans, so I started to carry them out.

This is the awesome part. Things started to go wrong… Unpredictably so- but I kept pushing though, ignoring. Evidently, this wasn’t what I was supposed to do- and at the very last minute, God physically and  practically moved in me. I know this is the case because it wasn’t just me. “Something in my stomach’s telling me so” was what it was put down to- but I knew what it really was. I then was flooded with, what I now know was, feelings… it must have been a while since I’d experienced that, because I didn’t recognise them! I couldn’t stop smiling. It turned out God was always there with me, but because my feelings were so messed up, I just forgot. But I now know that He’s here with me. No matter my circumstances, and when my feelngs inevitably change, this knowledge isn’t going anywhere. So good.

But I want to remember EXACTLY what I’ve got now. So that, if things go downhill for me again, I’ll have a little reminder. I’ve told a few friends about my ordeal already, and each time, was told to write it down. But, yet another hurdle has come my way, and I’m now unable to handwrite words in succession…. which comes in handy when writing a sentence…. or, like, 30. So, typing’s become my bag. Beside, it’s fun to blog, and perhaps I can encourage other people who are going through shit too.

New… girls?

New Years. It’s always such an anticlimax. Every year I put so much emphasis on the fact that how I spend my new years eve will have a bearing on the next 365 days… I didn’t realise I was so superstitious. But, in actual fact, new years is just marking or celebration that the earth did actually complete it’s circle around the sun this year, and NOTHING else. It’s just a day that turns into night with fireworks, and then it happens ALL over again (sans fireworks) 365 more times, until we celebrate the earth doing its round thing all over again. However, this doesn’t mean I’m against New Years Eve celebrations what-so-ever, I’m all for dressing in sequins, drinking for 12 hours straight, then snogging the closet boy to you on the stroke of midnight. But all I’m saying is, that I’ve FINALLY realised that a personal marking of the New Year isn’t completely necessary to guarantee happiness and health for the next year.

Hmmm, I’m a bit late for the new years eve rant, I’ll grant you. But, I think I can count on one hand the amount of well days I’ve had this month, so I haven’t particularly been in the mood to show my massive internet following just how awesome this year has been thus far.

On a lighter note, I watched Mean Girls for the 100-and-nth time yesterday, and forgot how extremely similar my life back in 2006-09 was to the protagonist’s, Cady Herron. She had just moved from Africa and started at a new school for the first time in her life (previously, she was home schooled.) The movie was released a year prior to my landing in California, and having to attend school there. So, as a 16 year-old girl, you can imagine how eager I was to experience a whole new culture right in the middle of high school (man, it is so difficult to portray sarcasm over text.) But I did enjoy being able to relate to Cady’s first encounter with mean girls.

Just replace the “Africa” with “Australia,” and the “white” with “not tan.”

The Disguise

Ergh, got another headache and am stricken to bed for the THIRD day in a row… but when life gives you lemons, make a poster! (… that’s a blog post in the digital age, I think it’s appropriate.) So I’ve decided to just blog on a sick day…. whenever one crops up (which seems to be a frequent occurrence these days…)

Hmmm what to write about? I could diverge on the awesome cat ears I made for halloween. I know; a cat- not too original on all-hallows-eve. But, since I made the ears myself I reckon there’d be a spark of uniqueness in there somewhere. However, costumes were about the only interesting thing on my halloween. That, and dancing babies 🙂 (oh, and mignons) So, that’s about it on the fab and furry (yes, FURRY) cat ears. How about my brilliant Helga costume I wore to a birthday party last week? You know, from Hey Arnold! That cool cartoon we used to watch, with the jazz music and the football-head. Anywho, Helga’s in love with Arnold, and funnily enough there was an Arnold in attendance.

Actually, now I think about it, it appears that I essentially put a mask over my quirky lil self at social occasions. (when I typed that I said it in my head as occ-as-y-ons, tis how it should be read.) That judgement being made from several of said occasions (well, two… but, artistic license FTW!) Hmmm one might assume I have terribly low self-esteem, considering the many times I don’t want to be myself. However, Helga legitimately is my favourite cartoon character from the 90’s. Hell, of all time. Her, and Arnold- I just happened to own a pink dress. So, I consider dressing as Helga as a massive honour. Go Helga. And to being a cat- who doesn’t want to be one?! 9 lives AND they give off a spooky vibe. The costume’s a pretty simple one too- all black. like the NZ rugby team. You could say I’m just as intimidating?

So there you have it. I’m spooky, intimidating and have a uni-brow. Well, sans-uni-brow. That’s just Helga. Good ‘ol Helga.