Cancer

The juxtaposition of both happy and sad

by Veronica on October 27, 2011

I got some amazing news today. Throw your hat in the air and shout kind of news, run around the house squealing, tell everyone in sight kind of news.

(No, I am not pregnant.)

It was amazing news. I poked Nathan until he woke up – lazy bones was napping on the couch – and told him. I rang my parents, and spoke to my father and told him the great news. Mum wasn’t home.

I was so over the moon that I caught myself for a split second starting to dial the number for my grandmother.

And then I burst into tears because she is dead and I can’t ring and tell her. Suddenly I wasn’t so excited, I was just bone crushingly sad.

Death is hard. Death hits you at the strangest of times, when things are going well. You’ll be travelling along, and things will be just fucking perfect and then your brain will collapse in on itself and you’ll be left sobbing. Death is so final and I think that is the hardest part to live with.

I cried for an hour and then I rang my mother and we celebrated and cried together, because that is what you do.

Knowing that Nan would be excited and proud isn’t the same as ringing and speaking to her. Knowing that she would be cheering me on from the sidelines is nothing like sitting down and telling her about it. It’s just not the same.

Things are going well for me. They’re going really really well. I got another couple of businesses to sign on to Showcase Tasmania, I’ve got a few more interested and in the process of confirming and deciding and (the biggest thing I suspect) it’s finally Not Winter anymore.

I am happy. I am truly truly happy. And in the same breath, I am so terribly sad, because I am getting married in a month, my blog is doing well, things are happening for me and my grandmother is still too dead to share this with.

And that is the problem right now.

***

Ghosts and the possibility thereof aside, death is death. It’s final and I can’t change that.

I should hopefully be able to share my news with you in the next week or so. I am really excited about this, but you know, pass the tissues. I’ll cry and dance at the same time.

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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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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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A mish mash of things, also, Happy Birthday to my brother.

by Veronica on June 30, 2011

in Blogging,Cancer,Gotta Laugh,Grief

It’s dark and cold when Isaac comes stumbling into my room, bleary eyed. He’s too asleep to say anything yet, so I throw back the doona and welcome him into the warmest part of the bed. Sighing contentedly, he snuggles in and I watch his eyes close, praying that we’ll both get more sleep.

Two minutes later, he is poking me in the eyes.

“Hi Mummy.”

“Hiiiiiiiiii Mummy!”

“HIIIIIIIIIIIIIII MUMMY!”

I struggle to get my eyes open long enough to look at him, before tucking the blankets in tighter around him and asking him to please, fortheloveofeverything, sleep.

It’s not long after this that Amy joins us and jumps into bed as well. Her morning breath threatens to knock me dead and I make her roll away from me and breathe somewhere else, on pain of being kicked out of bed. The room is icy, despite the underfloor heating and I suspect the world is frozen.

Eventually, the sun rises and I am forced to be awake. No one says anything about getting up, however, so I stay in bed with a book for a little longer, while everything defrosts. The children come and go, alternately snuggling me, or tucking their cold feet under my legs.

Good morning.

***

So, I’ve had this problem. I’ve been caring too much about what you think and not enough about what I want. Not changing themes, not redesigning, writing on a schedule, not posting because I only posted yesterday, or this morning. And honestly, I think doing it for someone else is doing it wrong.

Somewhere in there, I stopped telling stories and started just talking about stuff and maybe there isn’t a difference, but caring so much is killing me.

I’ve been more caught up in branding and social media and working the system, that I lost the bit I loved, which was sharing stories and snippets. I’m not saying there are changes afoot, but there are changes afoot. Sort of. I’m going to write what I like, when I like, regardless of when I posted last.

And if I start to worry about cluttering up people’s readers and writing too much, or not writing enough, well then. We’ll all just deal with that then.

***

When I was 5 years and 7 months old, my baby brother was born. I remember my father picking me up from school one day, so that we could go and see Mum and David in the hospital. Some details are fuzzy, but I remember being absolutely positive that I needed to wear my white shoes to the hospital and spending long enough trying to find them that that my father was frustrated with me.

In the mess under my bed, I eventually found my shoes and squeezed into them, before discovering that they were too small anyway. I didn’t care, I was five and I wanted to wear white shoes to the hospital to see my mother.

That was 17 years ago now.

Today my brother turns 17 and he’s had a rough time the last two years. We buried our grandmother on this day two years ago and so it’s bittersweet. Life and death, all tied up together. The timing could have been better, but birth waits for no one and neither do funeral directors.

I would really appreciate if you could send him birthday wishes here, if you’d like.

Happy Birthday David! I do love you, even if you’re annoying sometimes.

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The days are long, but the years are short

by Veronica on May 27, 2011

in Cancer,Grief,Headfuck

I stepped back and took stock of everything. It’s nearly June and the dread of the month is probably far worse than the actuality of it. I remember not writing about a lot of things, for fear of upsetting Nan and now, I look back and wish I had a record of each day as it passed, of the emails sent and received, of doctors visits and prognosis and finally, inevitably, the downhill slide to death and grief.

I wish I had every word, every memory, saved for posterity, rather than relying on the memories of a stressed and sleep deprived mind.

Someone said to me once, about life with children: The days are long, but the years are short. That fact slapped me in the face as I realised that it’s been nearly two years.

I’m not sure where that time went, except it’s gone now and wishing it back again isn’t going to change a thing. Would that it could.

Two years ago my son was small and placid, content to lie on the floor by himself. He was smiley and he attended every appointment with us, while I wondered how much time she had left and whether she would see my children grow up.

Life is hard. When you’re the one having to move through life after death, when it feels like the world should just stop and allow you time to process your grief and learn to live again, that’s hard.

***

Stop. Move around and remember to breathe. In and out, out and in. Don’t think, don’t remember, just get through the day.

Make it through until bedtime, then go to bed. Sleep, dream and wake, to do it all again, over and over.

If you haven’t torn your hair out by now, what’s stopping you?

We get caught up in the drudgery of the days and fail to see the years passing by, faster and faster. Like a river, speeding up as you head towards the waterfall (a hurtling death), you can’t seem to slow it down.

One day, you’ll turn around and look at the river of years behind you.

***

The years are short, but the days are long and I need to just keep moving.

Everything will be okay.