Everyday is an epic battle to the death and everyday I win


So ends another epic hospital day. Panic attacking, blood clotting, epic hospital day. Hopefully everything will be back to normal on Friday. I feel like a warrior after these epic days, like I’ve fought long and hard to earn this blood splatter on my track pants. But I haven’t. The blood is mine and I barely even remember how it got there. It seems like weeks ago, but it’s really only been four hours. Is it really still today?


Underneath the Ant Hill

It’s insidious how it starts.

Tiny slivers of doubt worm their way inside, leaving pinpoint holes in my carefully crafted exterior, giving way to massive tunnels deep inside. Have you ever seen what lies beneath an ant hill? There’s a whole city under that little mound of sand.

That’s what it’s been like for me. I try to be an ant, carrying a hundred times my body weight and trying to believe it won’t crush me. But I’m not an ant, I am the sand. I am the earth displaced, carved into tunnels and underground malls. I’ve become unrecognizable, even to myself. All beneath an innocuous little pile of sand.

Here’s the thing: I see two very different versions of myself. One is very sick and spends her time at the hospital and thinking about life, the universe and everything. The other is me. Just me. We’re both just trying to survive.

Happy birthday and other words I’ll never say to you.

The first person I ever met with Reynolds syndrome was named Kitty. I met her at a meeting at the arthritis society in 2005. There were only four of us and six weeks set aside for support group meetings, so we continued to meet at each other’s houses. We called ourselves the butterflies because it was nice to think that beauty would emerge from our pain.

Kitty was already on oxygen when I met her. She’d been living with scleroderma at least twenty years. And she had lived. Despite the challenges of sclero-hands, she worked as a psychiatric nurse. When I met her, she was transitioning to ODSP. Her pulmonary fibrosis took a long time to build up, but it was now past the point of letting her breathe on her own. She was on oxygen and she scared the living fuck out of me.

I thought I saw my future, but I didn’t. I only saw a dying friend.

Lung damage is nearly universal in systemic scleroderma, but it doesn’t become severe in most patients. Chances are, I will never need a lung transplant myself. Chances are, my scarring won’t get critical. I am not Kitty. We may have shared the same diseases, but we didn’t share all our symptoms. Her liver was barely affected by PBC, whereas that’s my main concern right now. But that’s not what I thought back then, before I knew much about how this whole autoimmunity business works.

Back then, my new friend was dying the lack of future was all I saw.

For both of us.

It’s hard to have sick friends. It’s a double-edged sword, because you can help by relating to each other, but by the same token, when things go bad, you can relate all the more. You see the struggles and the losses and they all feel so personal. “That could easily be me.” And none of it is fucking fair.

Kitty got her first transplant after about a couple of years. It was amazing how much better she looked afterward. It was terrifying how
sick she looked by the end. She rejected the first transplant and kept fighting through another. Even as her her body rejected her new lungs again.

I knew her for seven years. I only saw seven years worth, but it was a much longer struggle for her. She was diagnosed at 17.

Today is Kitty’s birthday. It’s the third that’s passed since she left this life. I don’t know what the point of this post is, beyond trying to honour her memory and relieve some of my survivor’s guilt.

I guess, in the end, I just want to say, “Happy birthday. Kitty.” You are not forgotten.