Grief

So far from okay

by Veronica on September 14, 2011

in Cancer,Ehlers Danlos Syndrome,Grief,Headfuck,My body is broken.

My last few years have been … eventful. Starting with a pregnancy that didn’t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn’t exactly been the time frame that I would hold up to the light and dissect, more the time frame that you force to the bottom of your closet, stomping on it as you go, so that you don’t have to deal with it anymore.

I signed up to participate in RUOK Day and then promptly decided that I would be better off stabbing myself in the eyes.

I am not okay. I am so far from okay, that okay is the distant shore that I left some years ago, before doctors told me that things were “all in my head” and tossed around words like anorexia and problems at home to explain why I was sick and exhausted, why I threw up every day and why my joints hurt so badly.

You tell me, how are you meant to trust the medical professionals to help out with mental issues, when mental issues are what they thought your major, genetic, connective tissue disorder was? I don’t trust them to help anymore.

I watched my grandmother die. I dealt with the fallout that rewriting a eulogy caused. I read long winded rants about myself on the Internet, written by a family member. I dealt with the trolls. I helped clean out her house, knowing that it was never going to be okay that she was dead and we were parcelling up her belongings.

I went to a doctor to discuss anxiety medication, only to be told that it would be better to sort out WHY I was anxious, rather than just medicating. You can’t cure grief by wanting it to hurt less, any more than you can make a broken bone heal faster than it does. I left with medication, that didn’t work anyway.

My son was diagnosed with autism and while it wasn’t the worst thing to happen, it was the straw that broke the camels back. Really universe? Autism and Aspergers ON TOP OF EVERYTHING ELSE? REALLY?

Fuck you.

I would like to be okay, in the same way that I would like my joints to stop dislocating and to stop vomiting all of the time. To stop having to deal with meltdowns and the assumption that I am okay, because I tell everyone I am. I would like people to notice, without having to be told, just how far from okay this whole mess is and to stop assuming that they know how they would handle it.

I would LIKE for the Pain Olympics on the Internet to stop and for people to stop negating what I am dealing with, because it could be so much worse. Sure it could be worse, but stop trying to fucking jinx me. Last time I thought that nothing else could go wrong, everything else went wrong.

And you know what? I DON’T want to talk about this. I don’t want to cry anymore, or have to talk about this, or try to explain. Writing it is hard enough. The last psych I talked to about my anxiety and grief, seemed to think that it was nothing to worry about. Obviously I downplay things, really well.

RUOK?

No. No I am not.

Now excuse me, while I get off the Internet, before I am tempted to swear anymore.

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I watched The Cove and I cried. You should watch it too. #thecove

by Veronica on August 28, 2011

in Grief,Headfuck,Soapbox

It’s like poking at a sore tooth, wanting to flip the world upside down and peer at the dark underbelly of humanity and our arrogance.

I make myself do these things because I feel I need to bear witness, and then in turn, ask other people to bear witness with me.

I watched The Cove tonight on ABC and I cried. The slaughter of dolphins in a cove in Japan, when the water turned red with blood.. Images of dolphins trying to escape and the screams of the babies as they were stabbed to death will make me cry for while yet.

Dolphins are possibly, more intelligent than humans. They are self aware and yet, we insist on killing them. Most dolphin meat isn’t sold as dolphin meat, but sold as whale meat (which: whole other issue, humans should not be killing whales either).

The dolphins that are killed are the ones rejected by the dolphin trainers. Deemed not pretty enough, or perfect enough to be sold to places like Seaworld, they are herded into the cove and slaughtered. Every single one.

If we didn’t have a market for captive dolphins, would the slaughter still continue? I don’t know.

I can’t do anything to help, except throw a little money the way of the campaign and add my voice to theirs.

I am standing up to say that this isn’t right and more steps should be taken to stop it.

You can watch The Cove on iView if you missed it. It’s available for 13 days, after that you’ll need to buy the DVD.

Have tissues handy.

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Sunday Selections, sort of. With lots of talking. Because I CAN.

by Veronica on August 28, 2011

in Grief,Headfuck,Life,My body is broken.

My children have been screaming at each other for hours. Amy has done something to Isaac, but Isaac has touched something of Amy’s and it’s just this big convoluted mess of screaming and sibling angst and apparently I’m not paying enough attention to either of them, despite ending up with both of them in my lap at every opportunity.

We’re all sick, with some sort of fluey cold thing, and I’m due for my period, which means my joints keep falling out of place. Exhaustion levels are high, as are levels of snot soaked tissues (and shoulders and knees – thanks Isaac) and PMS.

I spent some time looking back through old photos, like I always do on Sunday and now I’m sad. I’ve got PMS and I miss my grandmother and the week of slightly warm weather has decided to disappear and nothing is working how it should, least of all my body. Shoulders are not meant to go crunch when you roll over in bed.

Some days, I would like to just go back to bed and stay there. Some days, it all just feels like too much and I’d like to trade back the dead grandmothers and autism and Ehlers Danlos for a door that isn’t quite so tough.

Please.

My children before they got all angry with each other:

Our sunset the other day:

And these, that make me miss Summer so terribly.

MONA FOMA:

My garden – before the frost killed everything.

See more Sunday Selections here.

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Soap and memories

by Veronica on August 8, 2011

in Amy,Grief,Headfuck,My body is broken.

When I was at the Queen Victoria Markets a week ago, I bought some soap. Carefully chosen scents, some to wake me up of a morning and some chosen because they reminded me of other things.

One of them is a lemon verbena scented soap and smelling it for the first time properly tonight, as I showered, I was overwhelmed with a rush of memories. Which sounds silly, but scent and music will for me, always hold more memory than most other things.

In the weeks before Amy was born, when I was heavy and slow and waiting on her birth, my mothers friend gave me a gift basket. Just for me, it contained a loofah and some lovely soap, scented like lemon verbena. For after the birth, she said. Every woman needs a little bit of luxury, because the first shower you have after giving birth, feels like the best shower ever.

I carefully packed it into my hospital bag when I was 38 weeks pregnant, amongst my tooth brush and face washers, the tiny baby clothes and the smallest socks you could ever imagine. It was mine, all mine in a bag full of maternity pads and underwear, nipple cream and nursing bras.

After Amy was born, in a rush of blood and screaming (the doctors, not mine) and trauma, oh so much trauma, I forgot about the soap. I had a baby you see and there isn’t anyone quite as proud as a new mother. I held her, skin to skin before she was removed to be checked for breathing difficulties and then, thankfully, returned. Her eyes blotted out the terror and trauma that birthing her had caused and it wasn’t until years later that I was even able to think about how she got here.

Before they put the hat on her, to cover up the giant swelling on the back of her head. Forced extraction is not fun.

My family arrived, while I concentrated on Amy’s face and lay with my legs in stirrups, being sown up three times over. Even then, it wasn’t easy, my skin not holding up like it should and preferring to tear. A sign of things to come.

Photos were taken and a very proud (and very tired – having just come off night shift as I went into labour) father got to hold his daughter, while I showered.

Lemon verbena soap smells about as good as anything you can imagine, when you are covered in blood from your breasts to your knees. I sat on a chair and showered, while my grandmother talked to me, before washing the blood off my legs. It was a hard birth and I was still shaky as she helped me get dressed. I knew exactly what my mothers friend meant when she said that the first shower after a baby is luxurious.

I used that soap for the first few weeks of Amy’s life, before everything got the best of her and she decided that sleep was for the weak and silence was for fools.

When she was four months old, we moved into a new rental property, with a lemon verbena bush growing next to the path gate. Amy used to escape from that house and crawl down the path and together, we would pick sprigs of lemon scented leaves and crush them.

On the long days, when I would walk for miles in the hope of getting Amy to sleep, or stop screaming, it would be the lemon verbena bush I would brush past as I took the pram in and out of the gate.

I wasn’t blogging then and had scant comfort, living in the middle of nowhere with a sleepless screaming baby. It was a hard year.

The soap I used this evening brought all of this back to me sharply. The pride I felt in myself and my newborn daughter, coupled with the intense loneliness and isolation a small, screaming baby and rural life can bring.

Five years have passed since I was given that soap, but tonight it feels like no time has passed.

I could call myself stronger for all of the things that have happened since, but I don’t feel stronger. I just feel more tired – tonight more so than anything.

But I will continue to use the soap, because memories – they aren’t a bad thing. Even if they sting and take me somewhere I wasn’t sure I was ready to go yet.

What holds strong memories for you?

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Getting out of the habit

by Veronica on July 13, 2011

in Autism,Blogging,Cancer,Grief,Headfuck

It’s easy to fall out of the habit of blogging and harder to get back into it.

When I first started blogging, I would write every day. I read back through my early archives and cringe; the writing is terrible and did anyone really want a play by play of how Amy wouldn’t sleep through the night? I wouldn’t think so, but apparently they did and eventually, readers and subscribers came.

I kept writing, every day, even when I was tired, fighting the guilt when I would miss a day. I managed NaBloPoMo in my first November of blogging and after 30 straight days (of drivel, no doubt) I was in the habit and I continued to write something, every day.

Someone even convinced me to sign up for Blog365 and there I was, committed to blogging every single day for a year. I knew I was insane and this was proved by my incredibly crappy writing early on in the piece and my increasing panic, as we completely failed at trying to get pregnant, bought a house and moved into it.

But you see, the thing with moving house is that you end up with no Internet for a while and there I was, three months into Blog365 and 5 months into my blogging every single day adventure (idiocy) and suddenly left without Internet for 10 days.

After the first three days of freaking out and chewing my fingernails, I realised that I was probably every so slightly addicted. Which, maybe, isn’t a bad thing, when you think of all the other things I could be addicted to instead. I spent the next week unpacking, laying in the beanbag, reading and playing with Amy, who was a toddler terror.

Of course, the world didn’t implode and I started blogging again, as often as I wanted to and about whatever I liked. My stats rose, my subscribers slowly came up and I gave myself permission to not blog as often.

Time passed, as it does. We managed to conceive Isaac and a hellish pregnancy later, we had a healthy baby. Considering I had been certain my pregnancy was going to end in disaster, it took a little while to come to terms with the nature of Isaac being entirely healthy (barring EDS – which we didn’t know we had at that point, and autism).

As that time passed though, I dialled back on what I would and wouldn’t blog about. Constantly reassessing my privacy, as my blog became more well known within my circle of friends. Nan was dying of cancer at that point and I didn’t blog the first day after the diagnosis, instead posting a video of REM “Bad Day”. It was too raw and I didn’t want to be forced to share the raw with anyone.

Between a newborn baby and traipsing backwards and forwards to the hospital, blogging dropped off my list of top priorities. I couldn’t give up this space, but I also wasn’t giving it the time I had in the early days.

I guess that’s one of the good parts of blogging in the early days, everything is so full of fire and excitement that it’s easy to keep up.

Between then and now, I guess I fell out of the habit of writing as much as I used to. Which was great, for my sanity and also, terrible for my sanity. A double edged sword.

I look around at how blogging has changed in the last 2 years particularly and I know that I’m not keeping up. I also know that I don’t have to be keeping up to be happy with what I’m doing and I can’t deny I am entirely happy doing what I’m doing.

I just feel like sometimes, this whole thing, this writing gig, is getting lost amongst the noise. With the PR pitches and stuff, I’m wondering what happened to networking, to community, to friendship building and my habit of writing every day.

Change is not a bad thing. There are things coming out of the last two years of change that have been particularly spectacular for me and I’ll hopefully get to announce them publicly this week.

I’m just wondering when I changed. When I stopped writing a post because I was worried about traffic, or stats, or how it would be received. When all of my posts ended up going to drafts for weeks before publishing, rather than a quick edit and sending it out into the world.

Of course, some posts should not be written raw and some people should not be allowed to read my blog. These are things I know now.

I also know that I need to write more, even if it doesn’t end up here.

If I don’t, I run the very real risk of going mad.

And that’s probably not a good thing.

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