2016

Once again we find ourselves at the close of another year. It’s been a crazy one in so many ways. So many incredible, talented, and beloved artists gone, and so many suddenly. I won’t talk about the overgrown Oompa Loompa about to move into the big shack on Pennsylvania Ave!

As I did last year, I’m going to try to find 16 things I’m grateful for in 2016.

I’m no particular order. Except Number 1!
1. Of course this spot had to belong to my Poppy dog. She’s weird, funny, silly, daft, loving, beautiful and incredibly special. She’s challenging at times, but what loving soul isn’t?! I truly am blessed to be guardian to this wonderful little soul.

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Some snuggles with Poppy! ☺

2. While it’s a bit odd to be grateful for this next one, I’m grateful nonetheless. I’m grateful to have access to a knowledgable, and honest surgeon. While my shoulders are a long way from perfect, and a bloody long way from pain free, they at least aren’t dislocating now.

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My left shoulder. What two open shoulder reconstructions look like. They’re good sized scars that are hard to hide!

3. Kind of a follow on from the previous one. I’m grateful to finally have real answers as to why my body is as batshit crazy as it is! Thirty five years to find I’m not weird, weak, a bit soft, a sook, just clumsy, accident prone, and on and on. No, I’m “just” made with really shit connective tissues. As my surgeon put it, really cramp and dodgy scaffold. So technical! It sucks, but, I can’t change it, and it’s pointless being angry about it. I just do my best, as I always have, to make the most of life.
4. My friends. You’re a mad and motley crew sometimes. But you’re MY mad and motley crew!
5. My Mum. Through four major Ortho surgeries, several minor ones, thirty five years of my bat shit crazy body and all it’s thrown at us!
6. Music. Music is part of my soul, and I don’t know how I’d have survived this year without its uplifting, soul cleansing beauty.
7. Another follow on. Ronan Keating. My blondie boy. Over twenty years of love for this Dublin lad! The ticket to his Adelaide concert kept me going at times this year. I truly had the time of my life that night. And, as always, was left hanging out for more! I got closer than ever before. Next time, I’ll tick an item off the bucket list, and meet him!

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Ronan Keating @ the AEC 30/10/16 “Time Of My Life Tour” and oh boy was it the time of MY life! ❤

8. More music! The sodden, drowned rat crowd, including me, at the Rob Thomas gig at the Clipsal 500! Pouring rain, thunder and even ridiculously close lightning didn’t spoil that night!
9. Books! I’m a much slower reader than I used to be, but I still loves my books! I’ve just finished The Dressmaker. So funny, so dark. But so good.
10. Outlander, books and show! *nods*
11. Oh come on, you know this next one has to be Sam Heughan! If there’s a finer example of Scots Man, I’m happy to be redirected!
12. My Crows. God you boys put us through the ringer a few times this year! And despite falling a bit short at the end, I’m still proud of what you’ve achieved in the last two seasons. A special mention to my unofficial favourite player of the last ten years or so, Nathan Van Berlo. A tireless contributor to our club, a fantastic captain, and a good bloke to boot!

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Brodie Smith kicking in from the southern boundary in the first Showdown of 2016!

13. Being able to cuddle my friends kids! With a special mention to baby Zoe who made her much anticipated entrance into this world in March! Also that I’m Aunty Jac/Dac to them! ❤
14. Bridget Jones Baby. Laughed until I cried! My favourite of the three films I think!
15. That I (ME, Myself, I!!!) had the magnificent Adelaide Oval lit blue for International M.E./C.F.S. Awareness Day in May! For the second year running. And I have the ball rolling for the event again in 2017! fullsizerender

16. That I’m still kicking and screaming my way into another New Year!

And a bonus one –
17. Hogmanay! My Scots genes dictate I must use the Scots term for New Years! Happy Hogmanay folks. See you in 2017! img_4328

An Open Letter To My Body.

Dear Body,

We’ve been through a lot, you and I. You’re temperamental, bitchy, and downright abusive, but I continue to treat you as well as I can, including painful surgeries to fix what you see fit to destroy, including three major shoulder surgeries in five years, and a major knee surgery when I was only 15.

I do the physiotherapy to try to get you working the way you should, but you still crack the shits, and spontaneously dislocate, partially dislocate (sublux), twist, hyperextend, and generally treat our joints in a very poor manner.

The exhaustion you inflict upon me, on top of the joints and muscle issues, is crippling. It’s not tired. Or just tired. It’s absolute exhaustion.

The migraines, and all their absolutely delightful effects.

And let’s not even talk about sleep. You never let me sleep for more than about an hour at time before waking me to roll over, or as often as not, waking me with pain.

Today is no different. I’m stuffed. I’ve had to have a lie down after a shower, and another after doing my hair. Because tonight, I’m going to have fun, whether you like it or not. I’m kind to you all of the time, and tonight will be no different, but I’m going to have some fun in spite of you.

I know, from years of experience, that you’ll make me pay for this fun. But I’m going out just the same. Because sometimes, I need to win.

I’m going to a concert, one of my favourite things. I’ll be kind to you, and won’t dance all night, not least of all because I just don’t have it in me. But I will dance. And sing. And probably cry. But tonight, just for a few hours, I’m going to win.

Thirty Fabulous Five

And so it is. Today I’m officially half way through my 30’s. Thirty five. Thirty. Fucking. Five. Am I where I imagined I’d be when I daydreamed about being a “grown up” a quarter of a century, and more, back? No. Nowhere near it.

Am I the person I would have been had I not fallen ill so many years ago? I doubt it. But, maybe I’m more compassionate, and empathetic because I’ve had struggle.

But, in spite of living with chronic illness for way too many years, I’m still me. I am, and always will be Jac first.

I laugh at silly things.

I find farts way more funny than they should be.

I love dogs. I think my world is brighter for having such loving souls in it.

I love animals. Except snakes. I just can’t. Sorry.

I think children are amazing, the way they see the world, and their rationing processes. Not to mention the humour they develop so staggeringly early in life!

I’m ridiculously good at putting Ikea flat packs together.

I love The X Files. Grey’s Anatomy. Offspring. Sex and the City. Friends. Buffy. Outlander. Oh Sam Heughan, you beautiful, mesmerising man!

When I hear Uptown Funk, I have to dance, even if it means I’ll hurt for days afterwards.

I love sitting with my “sisters”, even if we have nothing to say, just being with my circle of amazing women is enriching.

I’d love to meet an amazing man to share my life with. Maybe we’ve already crossed paths but timing or whatever was off, or I was too shy to talk to him more. Maybe he’s still to show up.

I love music, and live music makes me feel like there really is a bit of magic in the world.

I have an uncanny ability to get my head around sciencey stuff that I really shouldn’t be able to comprehend.

I love reading. Charlaine Harris is one of my favourites; I’m reading Night Shift at the moment.

I’ve read the Twilight saga books, and, yup, I enjoyed them! Don’t judge me.

Fake people make me want to shake them.

I love broccoli. Yup.

i don’t care who dies in a movie or tv show, so long as it’s not an animal.

I still have hopes and dreams, they’re just a bit modified from what they used to be.

I love my Adelaide Crows. I’ve sat through the very best, and painful worst of their games, and in 18 seasons, left a game early only twice, and once was due to torrential rain, and was the night after my Gran died! And even then, it was in to time on in the 4th quarter!

I’m still me. Not the me I might have been, but is anyone exactly who they thought they’d be when they were a kid? I doubt it. And that’s probably a good thing.

Have a dance for me today!

2015

With 2015 drawing to a close, I thought while this year has been a massive challenge for me health wise, and all the difficulties that entails, I’m still grateful for a lot of things. So, here’s a list of 15 things I’m grateful for in 2015! In no particular order they are:

1) My Poppy. My dearest little dog. She’s not “just a dog”. She’s my kid with fur. My dearest friend. My closest confidant. And my ever present love.

2) For being able to be a part of Human Nature’s 25th Anniversary Tour, by recording a video for it, and having it included in the intro to their sell out shows across Australia in April and May! Not to mention being able to see the show live too! And yeah, it meant I finally had to make it entirely public how I broke my collarbone the very first time I saw them live!

Human Nature on their 25th Anniversary Tour

Human Nature on their 25th Anniversary Tour

3) That while my body has struggled monumentally this year, with eneeds (really shitty) joint issues, an upswing in the number of migraines again, and worsening fatigue issues (which is like saying you’re a bit forgetful when you have Alzheimer’s!), I’m still here. I’m still alive and kicking, and enjoying what I can, when I can.

4) For people fighting for recognition, treatment, and hopefully one day a cure for ME/CFS!

5) For my 5yr old cousin declaring that “you can’t be that old, you don’t have any wrinkles!” Made. My. Year. Delightful!

6) For the loving, affectionate nature of my 4yr old cousin, and her amazing gentle and kind nature.

7) That my football club, the footballing and sporting community can come together in times of absolute crisis and disaster, and really band together. It made me believe humanity isn’t entirely spent.

8) For my friends. When you’re made unreliable by illness, a lot of people just think you can’t be bothered with them, when really, nothing could be further from the truth. The ones that have stuck around, or better still, stuck close, know the me that’s often flattened by illness, and can see when I’m going downhill. Despite its name, invisible illnesses are actually rarely entirely invisible. What was it Dumbledore said about one being able to see if they’d just turn on the light?

9) That several of my friends have had beautiful healthy bubs this year, and that there’s another few baking more buns for the first half of 2016!

10) For my spoonie friends. Spread all over the world, you guys are freaking amazing!!!

11) That after years of crazy curly frizzy hair, it’s now almost straight. Definitely makes it easier to style! And for my hairdresser Hannah, who can still get a bloody great style happening with it!

12) For being able to go to a concert with my bestie for the first time since 2003! We saw Robbie Williams this year! The last one before that was Matchbox 20 in 2003! Waaaaaaayyy too long between drinks. So to speak!

We let him entertain us! Robbie Williams on his "let me entertain you" tour!

We let him entertain us! Robbie Williams on his “let me entertain you” tour!

13) For music. Music makes my soul come alive. I believe some songs make your being feel complete. (My song for 2015 is Uptown Funk by Mark Ronson feat. Bruno Mars! YouTube – Uptown Funk

14) That I live in a country, while far from perfect, is still a democracy, and where I am free.

15) For a really cute grocery delivery guy!! (who I sadly haven’t seen for a few weeks!)

And I have one thing I’m really proud of myself for achieving this year. May 12th is international ME/CFS Awareness Day, a date chosen for it being Florence Nightingale’s birthday, as its believed she suffered from M.E. or an M.E.-like illness  this year, with little prodding, I managed to get the amazing staff at the world famous Adelaide Oval to light the stadium up blue, (the awareness colour for ME/CFS) for the night of May 12th! I was overwhelmed beyond words and am still so very grateful to them for doing it to help raise some awareness.

Me and Poppy doing my little pose in front of the Adelaide Oval's "Light up the night for May 12th".

Me and Poppy doing my little pose in front of the Adelaide Oval’s “Light up the night for May 12th”.

The world famous Adelaide Oval lit blue for May 12th International M.E./C.F.S. Awareness Day.

The world famous Adelaide Oval lit blue for May 12th International M.E./C.F.S. Awareness Day.

There we go! It wasn’t that hard. I’m grateful for way more things than I’ve listed here. I just wanted to make a mostly lighthearted reflection on the year that was.

Have a Happy and Safe New Year folks. Stay safe, watch your mates if you’re out for the night, and get a cab or public transport home, please, please don’t drink and drive. xx

Idiots …

It seems everywhere I’ve turned in the last twenty four hours, someone is struggling with an idiot. They are everywhere.

My incident involved a family member who felt the best way to get their point across was to yell at me. That climate change doesn’t exist, all because we had ONE day of semi decent rain in ten weeks. Really. This is not the first time that this has happened with this individual. I TRY very hard to make allowances, though not excuses, for this person, due to head injuries from a car accident, and severe alcoholism. But everyone has their limits. In the past, I have told this person that if they declared they were a climate change skeptic in my presence again, they would get a size ten skeptic up their backside. It silenced them. For a time.

This morning, a girl I went to school with was subjected to a racist tirade, and her very existence questioned, because apparently you can’t be an Indigenous Australian, Chinese Australian, and Muslim, and a woman living in Melbourne. Umm. What the fuck? I know there’s some really genuinely stupid, willfully ignorant arseholes around, but I am genuinely lost for words at how anyone thinks it’s their right to say the sort of shit said to this woman. Who by the way, is every bit as real as me, and doing a bloody awesome job at life! One comment even suggested she should throw in one legged lesbian, just to really cover all bases.

What on earth makes people think they can spew this sort of abuse?

The idiot I had to deal with was by no means anything remotely approaching the level of idiot my school mate had to endure. But, its an interesting observation that my idiot also once declared Australian Indigenous people wouldn’t have advanced without white colonisation (they used the word settlement, but I feel colonised is more appropriate.). This person actually used the old chestnut “they didn’t even have the wheel”. Umm, 40,000 years on the most inhospitable, inhabited continent in the world, not just surviving, but thriving. They didn’t need the bloody wheel.

It seems like the world is becoming ruder and it’s getting more and more in your face every day.  I think, as much as I love social media, that it has a fair portion of blame to take. Keyboard warriors feel very safe behind their computers, tucked away in their safe homes and offices.

It costs nothing to be a nice person. It also costs nothing to realise that everyone is entitled to an opinion, but that often, that is all that it is, an opinion. That does not make it a fact.

As to my idiot, climate change, according to the vast, indeed overwhelming proportion of expert scientists on the subject is fact. His skepticism is rooted in reading newspapers with overwhelming bias due to interests in fossil fuels, and on shock jock talkback bullshit that appeals to the lowest common denominator.

Sometimes, though, we have to pick our battles. Usually, I make my point, argue to a certain point, and then, often as not, either hang up if it’s a phone call, walk out if it’s in person, or block if it’s on social media.

Idiots are everywhere. Hell, you’ve got more chance of being accosted by an idiot than you do of being shat on by a bird, or stepping in gum or dog shit while you’re enjoying a stroll in the park. There’s no avoiding them. But you can choose to be the bigger person and walk away. In fact, for your sanity, and health, I strongly advise walking away! I’ve had way more to do with idiots than anyone my age should have! Especially for someone who’s not in any of the usual discriminated against minorities (or any minorities for that matter).

What most of these idiots are, is bullies. Inadequate personalities who feel they have to bring others down to pump themselves up and big note themselves. The big noting really tests my pacifism. And my temper. But then, if I bitch slapped them into next week the way I’d like to, I’d would be as bad as them. And, at the heart of that, I’m not that person. Im a person who believes in peace. A person who believes, despite everything, people can be good. A person who believes that the good, will, eventually win. And, I’m a person who believes in facts. Sure, I have my opinions on those facts, but I try hard to make sure I make, hold and even change where appropriate those opinions. Facts can be verified. Opinions can not.

Be kind to each other. Every other person out there is fighting a battle.

Jac

Hair!!!

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Hair. Most of us have it. Few of us are always happy with it. And disasters, yup, we’ve all been there. Heading to the salon with magazine perfect images of what we’ll look like in our heads. Sometimes we get what we were after. Sometimes, we REALLY don’t.

Right now, I’m really happy with my hair. Having worn it long to very long for most of the last decade, with one short spell of shoulder length-ish to get rid of some crappy over coloured split ends. Right now, I’m wearing my hair in a pretty short bob, just a little longer than jaw length. After my curls spontaneously went limp about two and a half year ago, I’m able to wear my hair shorter, and manage it too! Short and curls were not things that went together for me. They work fantastically well for some, but not for me.

I’m also at the point where, thanks to my genes, my once almost black hair is now somewhat mousey and nudging 50% white. More in some patches. Hair doesn’t tend to go white in a uniform manner. So there’s careful parting, regular colouring, and in the week or two before I have regrowth done, brown/dark brown hair mascara, which mostly conceals my hard line of white regrowth. I’m considering options on the best way to hide that regrowth, and still look good. I’m very pale, and honestly, I’m not well enough, and don’t have the budget to be running to the salon every four weeks. Six weekly for cuts is draining enough as it stands for me. So taking everything into account, I’m still working out what’s my best option. Loads of foils to bring the colour to a lighter look, then go from there, is, at present, my best option. But, when you’ve been dark to very dark since toddlerhood, going to a lighter point is going to be a big change. So it is going to require some good hard thought.

So, onto hair disasters. A blogger I follow recently asked about them. What’s your worst? So, here’s mine.

Firstly, my mistake was to go to one of those no appointment necessary “salons” in a shopping centre. Fail. So I asked for a long bob, just shoulder grazing perfection. So. She cut it. Pretty much what I asked. But didn’t show me the back. Which she had. Not. Cut. Yup. So my sides were lovely lob cuteness, while the back was still halfway down my back. Yup. So. I had to go to my regular hairdresser, tail between legs, and have it fixed. Lesson learned. If you’ve got a hairdresser you get along with, that can manage what at the time was crazy corkscrew spiral curls (natural), stay with them! Hang onto them like your life depends on it!

My very worst haircut was one of my own doing when I was ten. Fringe. Ended up about 3/4 of a centimetre long. Yup. Three weeks before my first communion. So there’s the hair, immortalised in all its photographic glory. Oh and while that was growing out, I copped a cricket bat to the (super round, cortisone moon face) face, and had a black-eye that took six weeks to fully heal. 1991 was an eventful year for my head!

Less of a disaster, though definitely an adventure was having to learn to style barely wavy hair after all my curls went straight. Took me months to work out what had happened, thinking it was one of those thirty day keratin treatments, and it was lasting really well! It was just a coincidence as it turned out. I currently have five different hairbrushes in my kit, two different combs, and a vast array of products to add a little volume when it’s flatter than a pancake, and to smooth what can still be a little bit of a frizz ball!

Yeah, my hair and I have had some “adventures”. We’ve all had them. When you look at hair in magazines, or online, remember, most of those pictures have had a LOT of photoshopping, and what could be hours of professional styling before even getting in front of a camera. And, when looking for styles, please, take hair type and texture, as well as face shape into account before begging your stylist to give you a do there’s no way you can manage at home. My hairdresser did a little skip when I showed her what I’d like. Because, being a “do your homework” type of gal, when I’d gone looking for a short choppy bob, I’d searched “fine short hair round face”. If you’ve got a round ol’ face like I do at the moment (thanks to my cortisone battles, minus cortisone, my face is a good deal more oval), and fine hair, you go in begging for a pixie cut like Emma Watson had a few years back, there’s a fair chance you’ll be disappointed. Michelle Williams pixie cut on the other hand, was styled a bit more carefully around the face, and rocked/rocks on her! But, again, not going to be ideal if you’ve got curls. I read Emma Watson had her hair permanently straightened prior to her pixie cut, so that’s something to consider too. Talk to your stylist. If they’re worth their salt, they’ll walk you through what’s going to work, and what won’t.

Family Violence

There’s been so much written in the last week about the horrific death of Phil Walsh. I’m not going to go into the details of the event. There’s already too much being written, given the crime is already before the courts, and whatever we think about the alleged perpetrator, under our laws, he has the right to a fair trial, and the professional media, and bloggers like myself need to remember that when we write about this case.

What I am going to write about is family violence. Yes, Mr Walsh was a man with a moderately high profile in his adopted home of Adelaide. As the coach of the Adelaide Crows, one of the two Australian Football League teams, the spotlight shone on him pretty brightly, at least by the local media. But, in the last three months especially, the national sports media had developed a little more interest in this somewhat enigmatic man. I’ll be honest, I had no idea how to read him, but, what I felt was way more important than my totally unimportant opinions, was how his players spoke of him. I’m not just talking about how they’ve talked since that shocking news on Friday morning, but since he was appointed senior coach in September of last year.

What’s bothered me since Friday is the simmering tension from certain people that we shouldn’t be even talking about this mans death, because “he was only a sportsperson”. Yeah, that’s true. But. And here’s what’s going to be really bloody difficult for his wife, daughter and extended family are going to have to cope with, Phil Walsh is the very public face of family violence. Regardless of what he did for a crust, his life was ended in an horrific act of violence in his home in the early hours of Friday the 3rd of July, allegedly, by a member of his family. That makes him no different to the scores of other Australians who’ve been murdered by a member of their family, or an intimate partner.

Had it been Mrs Walsh, and not Mr Walsh, or along with Mr Walsh, would these people still be asking the question? My guess is yes and no. Yes, there’s been over forty women killed in Australia, just this year, most of them by a member of their family, or a partner or former partner. That’s more than one a week. It’s nearer to two a week. But, does that diminish the fact that Mr Walsh too had his life ended by a member of his family? I don think it does.

We have an epidemic of family violence. Rosie Batty has been the most amazing face of family violence. Her son Luke was murdered by his father in February 2014, on a public cricket pitch, in full view of Luke’s team mates, friends, and of Rosie herself. In the eighteen months since that horrific night, I’ve asked multiple times per week how does she do it. I think it’s the thing keeping her going. The hope that by speaking out, about Luke, about the violence she experienced at the hands of Luke’s father, about the failings of the system to protect her and Luke, that maybe she can save another family from the agony she’s experiencing, and will continue to live for the rest of her life. She’s spoken of how she thought she was doing the right thing, allowing Luke to see his father in that cricket practice setting. How she thought that public setting would make it if not safe entirely, then at least less likely that Luke’s father would do anything dangerous. I’m sure there’s tens of thousands of women in Australia and around the world who would have made similar choices.

Statistically, one in three women in Australia will experience domestic violence in their lifetime. Most of the time, that’s from a partner. It’s not at all unusual for a violent ex partner to continue their harassment and violence long after the relationship has ended.

Soon after Luke Batty’s murder, two little girls, sisters, were murdered by their father on Easter Sunday.

And, last Friday, a man who valued his families privacy, having not even wanted to have his kids names printed a few months ago, became another statistic. He became a case of extreme family violence.

So yeah, we’re talking about it because “he was a sportsperson”, but he was also a husband, a father, a son, a brother, a loved mentor, a friend, a colleague, and a teacher. His death should not be diminished because of his career. His wife and daughter have lost one of the most important people in their lives. Gone in an instant. Their grief should not be diminished. They have to cope with the news outlets still talking about this at the top of every bulletin. They are no different to any other family who has had a member ripped from their lives by violence, or family violence.

For those complaining, would you be saying anything had Mrs Walsh too been killed in the event? Or had she alone been killed? Yes, way more women are killed or harmed in family violence every single day, but we must not diminish the fact that this event is another example of family violence. As it happens, Mrs Walsh was injured in the event. I’m not going to even speculate how, or how severe her injuries are. Point is, she too was harmed, and could easily have been a second fatality Friday morning. But, as it is, she will likely experience post traumatic stress symptoms for years to come, along with the overwhelming grief at the loss of her husband of nearly three decades. She too is a victim of family violence.

The same must be said of their daughter, Ms Walsh. Had she been at home that night, she too may have been injured or killed. And despite having been overseas at the time, the likelihood of her experiencing post traumatic stress as a direct result of this event is high. As with the other more anonymous family violence victims we see reported every week.

We must continue to maintain women only shelters to allow women and children escaping family violence to feel safe when they do make their escape. I have been one of those children. I witnessed domestic violence, towards my mother, bullying of my step mother (I never witnessed violence towards her, but I know it happened), and violence against my elder step sister. I know the damage family violence causes first hand.

Every day, families are trying to deal with all sorts of things, usually behind closed doors. Often because no one wants to interfere, as its “not their business”. I call bullshit. It’s every bodies business. But, it’s a fine line for those family and friends of those in abusive situations. Say something to the victim, and you run the risk of alienating them from you, due to embarrassment, or even denial. Make yourself available to them just to talk. As awful and hard as it is essentially doing nothing, sometimes that’s a safer option, so that the victim of the family violence knows they have you to count on you when the time comes and they’ve had enough of the abuse.

We need to keep talking about family violence. About how we can help. And that it happens not just in lower socioeconomic demographics, but in every suburb, in every income bracket, all around the world. No one is immune.

Footnote: I have chosen not to refer to Mrs and Ms Walsh by their first or full names, but by this respectful address.

Equality in the U.S.A.!!!

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So, hot on the heels of my last post, overnight (Australian time), the Supreme Court of the United States ruled that marriage equality is legal, constitutional, for EVERYONE! In all fifty states.

I never thought that a country with a large a Christian lobby as the U.S. would achieve marriage equality before Australia. But, it’s happened. Other countries with marriage equality laws include Ireland, Spain, Argentina, Brazil, Canada, New Zealand, the Pitcairn Islands, Sweden and South Africa, just to name a few. England, Scotland and Wales also have marriage equality laws.

I’ve always taken it pretty much for granted that I can marry, should I wish to. It’s something that, until recently, I think most straight people probably haven’t given much thought to. But, as marriage equality laws have changed around the world, I have thought about it. A lot. As I wrote previously, it’s a no brainer to me. It shouldn’t matter whatsoever who has what bits and bobs. Love is love, whether or not there’s a guy and a gal, a couple of guys, or a couple of gals. If those two people love each other, and want to be married to each other, and, as Justice Anthony King wrote in the ruling “They ask for equal dignity in the eyes of the law,” and “The Constitution grants them that right.” it’s that simple. Equal dignity. That’s it. It’s clear, and beautiful.

Once again I say come on Australia, it’s time! Let’s give all our citizens that same equal dignity.

Equality

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This has taken me quite a long time to write, due to its sensitive nature and due to many peoples very strong views for and against.

I’ve been following the campaign for marriage equality in Ireland with great interest. I have duel citizenship, as my father was born and raised in the Irish Republic. I’m staunchly pro equality. I have yet to hear any valid argument for No.

“Gay Marriage” isn’t going to damage the children some same sex couples have had, currently have, or will have in the future, whether by giving birth to, having via surrogate, adoption, fostering or even by mentoring. If the couple parenting the child loves them, as most parents love their children, then what the hell is wrong with that? There’s millions of children around the world being raised in “non-traditional” homes. Single parents, through marriage or relationship breakdown. Where one parent has died. Where both parents have moved on and have new partners. Whether a kid grows up to be a decent person has absolutely nothing to do with their parents sexuality, and everything to do with whether their parent or parents are good people, or not.

Back to the Irish referendum. I can’t think of anything more special than witnessing a loving couple celebrate their love for one another by declaring it before their friends and family. and being able to make that public declaration complete with legal rights et cetera.

My Irish Aunty told me several years ago that she believed, through her own observations, and from conversations with another of her aunts, that her Aunty Terry was gay. Born in the early 1920’s Ireland, it’s hard to imagine how difficult that must have been for Terry. I struggle to get my head around how it must have been for her. As I understand it, she never spoke directly to any of her family about it. In my father and aunts generation, it would have been impossible to come out and live their life without fear or restriction. Even into my own generation, I think it’s been very difficult for LGBTI Irish folks. Stephen Gately hid his sexuality, because he feared the backlash and hate. For a lot of years, and even after his death, it was obviously causing heartache for those closest to him, for various terribly sad reasons.

In Australia, we seem no closer to reaching marriage equality. When even my father, a self confessed homophobe, can say “why not, who’s it hurting?” (Seriously, genuine case of could have knocked me down with a feather moment), then I think most reasonable people should be able to see that marriage equality will hurt precisely no one, and will in fact give tens, if not hundreds of thousands of Australians something the straight populace often take for granted.

For all those “marriage is between a man and a woman” folks, how good a job have straight folks done at marriage? Hmm. What’s the divorce rate in most western countries? Around 50%, or higher in certain age brackets or demographics. Between a man and woman? Or women, plural, in those ultra conservative religions where polygamy is the norm? Yeah, straight people have done a bang up job at marriage. Shit happens. It’s not restricted to gay or straight couples. People mess up. People grow apart. Sometimes the couple should never have married in the first place but did due to family pressures, or for the wrong reasons. Religion, “because it’s time”, because everyone else is, not the right reasons. There’s only one reason to get married in my book. And that’s a really simple one. If neither of you can imagine life without that person, and you both want to make that public declaration, then that’s the reason.

Polling suggests that a majority of Australians are in favour of marriage equality. I see it as my generations chance to do what happened in my Mums generation, when interracial marriage was legalised. That really made the sky fall, didn’t it? Oh wait! NO, it didn’t!!!

Someone I know recently posted on their Facebook a snippet of a conversation he’d overheard his neighbours having. He-neighbour informed she-neighbour “There’s GAYS next door!” Seriously. In 2015. This guy and his partner are just one of tens of thousands of examples of gay couples who are just like tens of thousands of straight couples. Who has what bits and bobs is thoroughly irrelevant. They love each other. It’s that simple. Apparently not to the fuckwits they live next door to, but it’s a pretty simple equation to me. Who the hell do these bigots who will so shamelessly declare “there’s GAYS next door!” think they are? Really. Days after reading M’s post, I’m still wondering what the fuck it mattered to their neighbours. One of my neighbours is gay. How does that affect me? Umm. It doesn’t. It makes no difference whatsoever to me. Nor to any of the other neighbours.

So why is marriage equality so important? Well, in part, it’s about spousal protection. About making decisions for each other without having what could be a disapproving family butting in and pushing out the partner should one become gravely ill. It’s about property and keeping legal challenges to that to a minimum, again by family. It’s about having their children say my Dads/Mums are married just like yours. There’s umpteen reasons. And, it’s about the couple being able to wave that piece of paper around excitedly the same way so many straight couples have over the years.

Marriage was not originally a religious institution. It was about property. It’s why women had to have a dowry. Basically paying the groom/grooms family to take her on. Usually with no say from the bride. There’s plenty of places in the world where a dowry is still demanded.

Politicians need to to stop putting their own “moral judgments” on this issue, and start listening to their electorates. They are employed by us, the voters. Their job in parliament is to do the things best for their electorate, not for their own personal moral feelings. I use the word moral to show its uselessness in this issue. The only “moral” thing we should be worried about is, basically, do no harm. Way too many people don’t view morals in this simple way. But that’s really what it boils down to. Marriage equality does no harm to anyone, so really shouldn’t be a “moral” issue to anyone.

I hope, one day in the near future, I can stand (or sit as is more practical in my personal situation), and watch some of my gay friends stand up and legally pledge themselves to each other.  I hope I can dance the night away with them in celebration!

Come on Australia! It’s time!

So what’s it all about?

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So I’ve talked recently about respect, and thinking about how you’d like to be treated. These posts both came about because of discussions happening within the disabled communities.

There’s a lot of disability discrimination in this world. By employers. By businesses who don’t have accessible entries or bathrooms. What’s the point of having an accessible restaurant, what the bathroom isn’t accessible? Or, if there is a disabled loo, but it’s being used as a box room? The late, great Stella Young was so passionate about these things. I wish I had her way with words, and frankly, her balls to confront these issues with businesses etc.

I’m going to talk a bit about me now. But it’s still on the disability topic.

I’m 33, and have battled Myalgic Encephalomyelitis, or more commonly, (and stupidly) known as Chronic Fatigue Syndrome, for 24 years. Oh and don’t forget that Syndrome part. That is what pulls all the crazy and horrible things my body does together under the one banner. Chronic Fatigue. WITHOUT the syndrome part is just one symptom of a large number of other debilitating diseases and conditions.

I got sick in 1991, following what my doctors thought was Glandular Fever (Mono in the U.S.). I continued with my schooling and reduced extra curricular sports and music. But I rapidly got more sick, and was referred to a Paediatric Immunologist. After a year, or more, I struggle to remember how long exactly, and after pretty much every test known to mankind, my doctor diagnosed me with C.F.S. At the time, Myalgic Encephalomyelitis was only rarely used in Australia in those days, mostly, as I understand it, due to following the U.S.’s lead in moving away from M.E., to the pretty crap, diminishing of the severity name, C.F.S.

The usual process for diagnosis of M.E./C.F.S. in the early 90’s was essentially a process of elimination. All the usual suspects are tested for and removed from the list of possibilities. An odd criteria was that symptoms had to have been present for a minimum of six months.

At the time of my diagnosis, my antibodies for upper respiratory tract, and gastrointestinal tract were all but non existent. I had no ability to fight almost any sort of infection in those areas. My cortisol production, which is a bloody important hormone, was shot. Instead of a fluctuating redding throughout the day, my readings were flat. As in like a pancake. My joints were already showing moderate problems with stability, causing pretty nasty pain for a child.

My diagnosing doctor took somewhere around a year to put a name on it. In hindsight, she initially ruled out abuse (a sad factor that any doctor has to rule in or out all too regularly.). Then with blood tests, she ruled out cancers and most autoimmune diseases. As she dug deeper into my blood work, it because all too clear my system was not doing what it should. I suspect she also ruled out depression via observing me. Although the I have some bloody hellish moments where I’m in a really bad headspace, it’s by no means anything like a clinical depression.

I gave so much blood, and peed in so many cups in that one year!

I don’t remember there being any big emotional “oh no” moment when I was finally diagnosed. As a nearly 11yr old, the blind optimism of childhood kept me believing that I would get better.

Months passed. They turned to years. My great diagnosing doctor was moved to the children’s oncology department, and I struck two of the most useless, stupid, arrogant fuckers anyone will ever have the misfortune to meet. I was lucky I had a strong advocate in my Mum. One phone call to my diagnosing doctor and I was back seeing her.

My health became somewhere stable, in that I wasn’t getting any sicker, but I certainly wasn’t getting any better either. All sorts of treatment ideas were floated. But most were dismissed as too risky. The two regular treatments I had at the time were vitamin B12 injections (into muscle!), and low dose long term use of antibiotics to hold back the endless infections I’d been getting. I know antibiotics can weaken the immune system too, but I was under close supervision, and it seemed to slow the rate of contracting infections.

I saw alternative medicine providers too. Quacks. All of them. I look back and shudder at the amount of money mum spent on trying to find answers and cures. Snake oil salesmen taking advantage of desperate patients and their families, who want nothing more than their lives back. The same type that insist they can cure cancer with potions, and prayer. Load of shit.

When I was 15, I had major surgery on my knee/kneecap to stabilise a VERY mobile kneecap. My shin was cut, lengthways, and moved to a better position, then bolted in place with a 50mm surgical screw. I mention this, because despite the mind numbing pain, I had a brief partial remission period. No one has ever been able to explain it really. It lasted about 3months. I had an accident, breaking my collarbone and dislocating my shoulder, along with bruising to my unoperated on knee. On top of that, I had the worst case of bronchitis and laryngitis I’ve ever had. Maybe the remission had run its course, which was why I got the bronchitis. Maybe the bronchitis made my system shit itself again. Who knows. But what I do know for sure is, that’s the last nearly normal period of you life.

School became impossible. A massive blow. I missed the social and intellectual factors. I missed out on the stupid crushes on completely unattainable boys. On learning how to speak to boys. Don’t get me wrong, my genes dictate that I’m a bloody verbal creature! But I’ve never found my comfort zone in those situations. I believe that missing those usual rites of passage is the main reason for this.

A handful of old friends stuck by. And I made a few new friends along the way. Mostly though, the new ones couldn’t really grasp just how debilitating this fucking disease is, and fell away in time.

There’s been a boy or two along the way. One particularly lovely one. He, as much as anyone can, understood me and my situation. Mostly. But the tyranny of distance, and the frivolity of youth meant that it ended abruptly. Not being able to go far, or have the energy to expend on meeting new people, meeting first boys, and now men, is next to impossible. And, even if I do meet someone, it’s rare to find someone who can comprehend that this disease is here to stay, and to accept, and even embrace me and and all I entail. I still hope. But it’s like hoping to win the lottery, it’s a 1:8,000,000 chance.

Acceptance is a big thing for me. Over the years, it’s sent me to the brink, and back again, trying to learn to accept my situation for what it is. In 2007, my specialist, an endocrinologist, told me “after this amount of time, it will never go away. There will be good years and bad years, with no way to predict which will be which.” I was silent in his office. But as soon as I was out the door I spat out something like “well I didn’t need twelve fucking years of medical training to work that out”. It was the first time I’d admitted to myself, or anyone else, that I wasn’t going to ever be complete healthy. It hurt. More than I will ever be able to put into words. It felt like defeat. Like if this was all there was, what was the point. I was already being made be the government to feel like I was a waste, and a burden.

I’ve been left feeling that way repeatedly by various agencies and by people who should have my back, but are all too happy to jump on the “you could if you wanted to” bandwagon.

Imagine how it feels to have someone ask “what do you want in life?”, you answer honestly, health. With health, anything is possible. But then be attacked and bullied because it doesn’t suit their image of you. Myalgic Encephalomyelitis can not be overcome by wanting things more. I was a good student. I loved sport. I played piano and violin, although not especially well. I had my heart set on first medicine, then when that looked too out of reach as my schooling suffered, I wavered over other things that appealed. Without limitations now, I’d be an anthropologist, happily working in a museum, or the like. My ambitious nature is still there. But now, it’s mostly used to keep from drowning in what is a never ending cycle of doctors, viruses, joint problems, gastrointestinal upsets, trying to have the odd outing with my friends, and crashing after each and every one of those things.

Last year, my Mum had to undergo a knee replacement. Which left her unable to do her usual helping me with day to day tasks. Mostly it’s things like cleaning, and food prep. But in recent years, I’ve needed help with bathing and driving. But with Mum out of commission, I tried my best to manage. With no help, from anywhere, things got bad. I’ve deteriorated to a level I’ve not been at for a lot of years. I was already struggling, but that was, as they say, the last straw. It really didn’t occur to anyone that help may be needed.

Myalgic Encephalomyelitis is a disease that can strike anyone down, at any time. A virus your body doesn’t handle and recover from. Trauma. Accidents. Anything that traumatises the system. Studies have repeatedly shown serious abnormalities in the brain, most specifically the Basal Ganglia, situated just above the brain stem. Abnormalities in Cerebrospinal Fluid. Inflammatory markers. Immune dysfunction. And on and on. But without more real scientific research, ie looking at the pathogenesis of the illness, via real biomedical research, we will be left languishing for more years. People die from this disease. Often due to massive systems failures due to Myalgic Encephalomyelitis weakening every system in their bodies. Our bodies can be miraculous things. But, they can also be fragile, where after so much strain on it, they just stop. Cardiac abnormalities are somewhat common within the M.E. patient base. Co-morbid diseases aren’t uncommon. Autoimmune diseases seem to crop up often.

Research is the key. Real research. Not faux bullshit psych stuff. You wouldn’t tell a cancer patient to do graded exercise therapy, nor a lupus or multiple sclerosis patient. M.E. is no different to them. It is no more “in our heads” with a psychological basis than any of hose other diseases. And we no more want it than those with those diseases.

M.E./C.F.S. patients are banned from donation blood around the world, due to the unknown pathophysiology and transmission possibilities of the disease, and because patients are likely to be negatively impacted by the donation process. We are also often rejected as organ donors for the same reasons, and because our organs often aren’t in good enough shape to risk putting into someone who’s already at deaths door. These bans are permanent. Even for the small number of patients who recover, the ban remains. It’s almost ironic on the blood donation side. We’ve usually become so good with blood draws that we are able to tell the tech the best arm, and often even the best vein to go for. Me? I’d happily give blood, so long as I don’t have to look at it! But, I can’t.

Back to me specifically for a moment, and my one wish. Health. While I accept this is what it is, it doesn’t mean I’ve given up. Far from it. I’m fighting more than ever now. But now, my fight is for research, to find a simple test so others don’t go through the hateful, endless merry go round that millions of us have been on. I fight for research for a treatment and preferably for a cure! I fight for those providing advocacy and support services. I fight to retain small amounts of independence, and to have a few outings that allow me to have some enjoyment, even if it means crushing fatigue, mind numbing headaches, and horrendous muscle and joint pain afterwards.

I’d love to travel, to see the world, not just see photos. To meet new people. To see where my ancestors came from. To meet the distant relatives I’ve come across while slowly (painfully slowly) piecing my family tree together. I’d love to feel the cold of the northern hemisphere winter on my face! To meet my Irish Aunty! I’d love to study. To feed my always curious mind. I’d love to have children. That’s a huge one. But none of these things are likely to happen. I’m learning to accept them. It’s an ongoing thing. A work in progress. It’s personal and difficult.

Having M.E./C.F.S. has been described all sorts of ways. I usually ask whoever I’m talking to if they’ve ever had glandular fever (Mononucleosis), and if they have say it’s like that, and being hungover, and having just completed a marathon a day for weeks, with no rest. If they haven’t had GF/Mono, I ask if they remember the worst flu of their lives. And then add the hangover and marathon bits. It still doesn’t really cover it. It’s hard to get your head around feeling like that day in and day out, for years. I’ve learned to pace myself. But it still pretty much only gives me so much time. I have to rest, be careful what and how I eat, plan my bathing, my clothes with almost military precision, and even then, I’m usually pretty well spent before I get out of the house. But I fight on, because I have missed and lost so much already, I need to have a little fun occasionally. So that when I’m stuck in bed for days on end, I’ve got fun to remember. To smile about. Because all too often, there’s not a lot to smile about.

Today is May 12th, which is International M.E./C.F.S. Awareness Day. Around the world, patients and those who know and love them most are doing the best the can to raise awareness of this invisible, misunderstood, and much maligned disease. Me? I’ll be dressing as a princess as part of my fundraising efforts. And, I will be visiting the world famous Adelaide Oval in the evening to take some photos of the venue, which has, very awesomely, agreed to light up Blue for Awareness day. When I got the confirmation email, I cried. Rather a lot. And there were squeals. Arranging it with them wasn’t hard. And it’s tremendous recognition of a so very poorly treated and ignored disease.

My fundraising this year is for Change for ME Australia, who provide advocacy and support for those with M.E./C.F.S., Fibromyalgia (an often co-morbid illness), and Lyme Disease. It’s hard raising money for a disease that is all too often put down to being lazy, or lacking motivation. There’s a link to my Just Giving page at the bottom.

I do my best to be a good advocate for M.E., although it’s often not easy when faced with negativity, bullying and ignorance. I hope this helps even one person understand just a little more what it’s like.

Everyday Hero https://give.everydayhero.com/au/jac159

Jac