I am not okay today.

by frogpondsrock on September 13, 2011

in Aspergers,Autism,David,Ehlers Danlos Syndrome,Grief,headfuck

I am far from okay but there isn’t a whole lot than anyone can do to make me better.

I also don’t see that anyone other than my very closest friend, asking me if I am okay are going to get a straight answer.

I will just lie and grin and say of course I am okay and then change the subject.

I am a brilliant actress.

RUOK is a wonderful concept but today it is giving me the shits.

Now before you start to get all upset with me and decide to lecture me about the ideas behing RUOK  and all that jazz.

This post is about me. Not about you.

If you are going to get upset with me, just piss off quickly and don’t give me the shits ok.

I am stabby enough as it is.

I am not okay today.

Tomorow I will be better, maybe.

The day my mother told me she had a black spot in her lung was one of those defining points in my life.

Everything now is measured in befores and afters.

The day my daughter was diagnosed with Ehlers Danlos Syndrome was another defining point

As was the diagnosis of her two chilfdren with EDS and their subsequent diagnosis of Aspergers and Autism.

My husband has Ehlers Danlos Syndrome.

My son has Ehlers Danlos Syndrome and suffers from anxiety.

These things are not okay.

These diagnosis dont bring sunshine and fucking roses into my life.

They bring despair.

Great fucking bucket loads of despair.

I am grieving.

I am grieving hard.

Lung cancer shouldnt have killed my Mother she was a non fucking smoker for fucksakes

My daughter shouldn’t have to struggle to brush her own hair.

She is 22 years old and can barely walk from one room to another.

Simply taking her children to the park exhausts her.

This sucks.

My son is 17 and is proving he is  grown up by rebelling against everthing we have taught him.

He has moved out of home.

He has dropped out of year eleven.

He was stabbed behind the ear in a brawl. The wound was superficial. My fear manifested as anger.

And I gave my son another reason to push me away.

He has unfriended me on facebook because I pulled him up privately on a thuggish racist status update.

I am desperately afraid that his anxiety will get the better of him.

I watched a police car driving up my quiet country road the other day and I was convinced it was coming here to deliver me bad news.

I started to cry with relief when it drove on by.

I know that this stage will pass but it doesnt make it any easier.

I share snippets of my life here on this blog.

Tiny slices.

I was told that I should have a professional ceramics blog and leave all the personal rubbish out of it if I wanted to be taken seriously as an artist.

But I cant be bothered starting a new blog  full of art wank and words and ideas that belong in a dusty book somewhere.

I use this blog to think out loud, to order my thoughts, my ceramics and my life are intertwined, as is the blog.

They all are a part of who I am.

Maybe RUOK has worked anyway

As I have cried and written my way through the shit that is in my head.

I am not okay today.

But I am feeling a tiny bit better, thank you for listening to me internet.

I will be okay tomorrow.

Because really what else is there to do but

Just keep swimming.

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Thank Goodness for Dory

by frogpondsrock on May 17, 2011

in blogging,David,headfuck,Love and Loss,Sadness

Because if it wasn’t for her I would have stopped swimming long ago.

This blog is only a slice of my life, it is a tiny snippet of how things are. I use the blog to get the words out of my head. I write out the sad, press publish and then walk away. The simple act of writing out how I feel, helps me to make sense of my emotions so that my head doesn’t explode with the weight of the words circling like so many hungry buzzards inside my mind.

I think hungry buzzards as a metaphor was a bit over the top but the image  of words with wings flying in lazy circles is making me smile.

I like this internet connection I have with you. I like the fact that Jess can hear the stones whisper, that Achelois completely gets where I am coming from, Janet sends me dragonfly notebooks and youtube clips, April sends me chocolate and Christmas ornaments that remind her of dragon eggs.

There are far too many of you to list but you all help me and I am grateful.

But there is a dark side to the internet community as well. A darker side that is giving me the shits. Trolls are not uncommon, plagiarism is rife, a holier than thou attitude is starting to come to the fore, cronyism is becoming more obvious and mini dicatorships are springing up left right and centre.

And now the Australian mummybloggers have a manifesto.  I will not be signing the bloggers manifesto. I will not be told what to do. I will especially not be told what to do in such simplistic terms, as if I am a child tottering about within the interwebs being told to “play nicely now.”

I like my manifestos to have a little more substance, to be a little heavier in weight, I like a manifesto that makes me think. My personal favourite is A Humanist Manifesto. Then there is the Dada manifesto, or the Communist manifesto or even the SCUM manifesto to give my brain an early morning work out.

But this post isn’t about blogging this post is about Dory whispering to me, to just keep swimming.

I took my teenage son to the doctor yesterday with the sole intention of getting him a prescription for anti depressants.

No mother wants to hear their child tell them that there isn’t any point in living because life is just too fucking hard.

The pressures of a new school environment where every bogan bully wants to fight the big guy in order to prove they don’t have small dicks. The constant pain from his Ehlers Danlos syndrome. The ongoing grief and loss from the death of his confidante and main support person, his Nan. All these things combined with the normal adolescent pressures were enough to send my son hurtling into a well of darkness and despair.

Our family GP could tell I meant business and he wrote out a prescription for David. He talked to David about lifestyle choices and the need for exercise and sunshine.

He also in one sentence totally dismissed David’s Ehlers Danlos Syndrome as being a contributing factor towards his depression.

For Fucks Sake.

This is the reality of living with a rare genetic condition in Tasmania.

Sometimes it is all just too hard for me as well.

But I am an adult, with 45 years of life experience behind me. I know that nothing is ever as hopeless as it first looks and I also have the clay which grounds me and gives me an outlet for my rage.

Dear internet, here are the words that are in my head.

I give them to you, so that they stop flying around my mind.

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There is too much silence

by frogpondsrock on February 1, 2011

in David,headfuck,Mona,Sadness

I wonder if one of the reasons for the reluctance to talk to our young people about suicide is the mistaken belief that we might give them ideas. As if by starting a conversation about suicide we might inadvertently plant the seed of death in their heads.

On Monday evening I went to bed early as it had been a long week and I was knackered but there is never any true rest in my house whilst my teenager is awake as he bangs doors, clatters dishes and clomps about the house late at night in an eternal quest for food and facebook.

There wasn’t to be any rest for me that evening either as one of David’s friends had put a suicidal status update on his facebook page. I lay awake in bed listening to my son trying to contact his friend, X on the telephone, hearing my sons voice rising in fear as he demanded that X pick up the god damn phone.

After about 15 minutes of distraught phone calls and frantic inboxing with no response from X, I ended up in the car in my nightie driving David down the road to X’s house.

I was so tired I was a bit trippy and the memory of my son frantically ringing and ringing X’s mobile has become less real now. Eventually when we were about half way there X’s brother answered the phone telling Dave he had come home from work and found the boy passed out in his bed covered in blood from multiple slashes to his arm and wrist.


Luckily the cuts were only superficial and didn’t require stitches.

David stayed with X that night and the next and on Australia day I picked them up and drove them down to the Mona museum.

I don’t know what I was hoping to achieve by taking the boys to Mona. I know that I was hoping that the museum would work her magic on X. That he would see that there is a whole other world of beauty and art and expression out there.

That there is never only one path.

That it is okay to be different.

That we are all different.

Maybe I was also a little bit starstruck by the sheer amazingness of the Mona museum and I know I wanted the boys to share my joy because in hindsight Mona really isn’t the place to take a confused and sensitive 16 year old. X was totally freaked out by the place. The darkness of the rooms made him jumpy and video art works that my eyes had only skipped over because they weren’t my cup of tea drew the boys in and they were repulsed by them. X was horrified by the wall of  porcelain vaginas and declared Mona to be totally creepy.The boys didn’t even glance at Snake as I took them to see the fat car hoping that the sensual curves of the car and the brightness of the red bodywork would at least  be a positive experience for them and it was.

As we drove away from the museum towards the city park where they like to hang out with their friends, we had a brief discussion about what is art and what isn’t. I had forgotten the black and white certainty of being sixteen, of a sixteen year old perspective that art has to be beautiful in order to be called art and I worried if I had done more harm than good.

On the Thursday morning I took X into a youth counselling place, I had previously spoken to them about X and they had prepared a packet of pamphletts and such for him. I waited in the car whilst Dave and X walked into the building and I knew that I had done all I could for this boy.

It is never easy when it is someone elses child.

Years ago an old woman held my toddlers hands in hers and told me, this boy is going to be a healer. Over a decade and a half  later I watch as my child gathers the broken to him, as the broken are drawn to him and I worry.

It is never easy when it is your own child either.

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by frogpondsrock on December 15, 2010

in David,potential insanity

I remember when I was a surly teenager whining at my mother about the cruel injustice of having to dry up the dishes or clean my room. Whine, whine, whinge, whinge, when  my mother finally lost her temper and snarled at me that she hoped that one day I would have a daughter  just like me.

Her words always stayed with me, probably because it was also one of the few times that my Mother slapped me. I was an incredibly self centred and selfish teenager who then veered off the rails into extreme misbehaviour once I had escaped from school.

It isn’t my daughter who is like me, though Veronica and I are very alike.

It is my son David that reminds me so very very much of my teenage self.

We even had similar haircuts at the same age.

Shoot me now.

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That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.

I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.

I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.

The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.

Because that is all we can do, just keep on plodding along.

The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.

So there is grief on top of grief.

Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.

Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.

There is also Anger, frustration and  a good serving of stress to top it all off.

I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.

I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.

I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.

Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and  try to educate other people about EDS.

I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.

The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.

For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.

The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.

Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.

As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.

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