Ache

I am tired.

Not a sleepy, sore-eyed tiredness that can be shrugged off after a few hours' kip. This is different. I can feel this, in my bones. A dull ache that won't subside. Perhaps it's the stress, the worry or the three hour shift that soon became 10.

I made a serious decision last month. I don't like those life-changing, adult decisions but I was up against a wall and time was a scarce luxury. In order to properly care for a sick child I sacrificed a year to his care and my family's well-being. At the end of the day family is all you have. Families are there, and families endure. So yeh, if that means watching a monitor for 5 hours, looking for a fit, then so be it. If it means cleaning a man's stomach contents from a piss-filled urinal, then so be it. I don't regret my choice, or begrudge being left in this position. I only wish I could do more.

It's interesting what people go through in times like this. When the wolves howl and the world comes down, all we can find to wear is a brave face. But the acne scars and the vacant eyes on the surface don't do justice to the haemorrhaging hell beneath.

In other news, it snowed tonight. I was reminded earlier of the saying "worse things happen at sea" - it doesn't help when the world around you is blanketed in a frozen ocean. In this winter trees become wraiths and the world is swallowed up. Lest I be swallowed and drowned too, I am retreating to bed. As a child I would hide under my covers from bumps and creaks in the dark.

Perhaps that solution can be applied to my current circumstances

Image Owner: Donna St. Pierre

To Distant Friends

I was bound to have to tell you sooner or later. But it's difficult. It isn't the sort of thing you send in a text, and it's not something I feel comfortable sitting down and discussing when we all get back together.

You've all met my youngest brother, James, I think. And you all know he has a disability - CFC syndrome. I won't bore you with the symptoms, I've probably told you them before, but one is severe eczema. At the start of February he picked up a herpes infection. For the rest of us it would manifest as a coldsore, but for him it's a systemic viral infection. He was admitted to hospital where the virus spread from his skin to his blood, and then on to the rest of him. It took a weak of aggressive antivirals and antibiotics to clear the infection and by all accounts he should be dead. Anyway, we responded quite quickly and had a lucky escape.

He was released from hospital after 7 days and life carried on as it always had. Fast-forward about two weeks, he's still home and all's well. While I was watching him he came into my room and complained about feeling sick. I asked if he had a sick-bowl and he pottered off to get it. But he didn't come back. After a few minutes I went to check on him and found him in the living room, collapsed on the floor, metres from his sick-bowl. We called an ambulance and I managed to get him conscious again but he soon drifted off again and began fitting. His fit lasted for several hours before they got sedated at the hospital. Fearing he had relapsed, doctors started his antivirals again and kept him for another week. They also did a CT scan to check for clots and haemorrhages - there were none. They also performed an MRI just to rule any eventualities out. On this MRI there is a marble-sized mass at the rear of his brain. A follow-up MRI with dye confirmed the mass was not a mistake on the scan or a remnant of his herpes infection. At this time we were told the mass could be anything from a bit of scar tissue to a brain tumour. The plan was to send him home to recover and get fit for a month before passing him off to a neurology team to treat the brain anomaly.

You can probably guess the next bit. He comes home and he's ok for a week. We're now at the start of March. Once again he comes to me and isn't himself - lethargic, dizzy, unresponsive, morose. He's taken back to hospital to get checked out and begins fitting again. They admit him again and his fits become more frequent, from every few days to every few hours. He's still in hospital now and will be for the next few days or weeks at least. Yesterday he forgot who our middle brother and extended family are - remembering only Mum, Dad, Sam and his grandmother.

With the month I've had, I didn't have much time for uni. I spent my time visiting the hospital, working my parents' shifts so they could be with him, and generally picking up the slack at home. As a result I'm not finishing university this year. I decided to interrupt and will hopefully go back and finish my last semester in 2014. My choice was either this, or ignore everything at home and focus solely on my degree. Obviously with the state my brother's in I'm not prepared to forget everyone to pursue a bit of paper with my name on it. Besides, I haven't slept properly or had time to look after myself since seeing him collapsed and fitting a few weeks ago.

I'm not quite sure how to wrap up, other than to say that this made more sense than dropping you a brief text like "lol guess what, not finishing uni, brother's got a tumour" or to wait til we're all together and ruin everyone's night with a whole host of shit. So yeh, you're my friends - you should probably be in the loop.