Everything - A Re-Post
On Monday, in the Health Council of Canada video I talked about the consequences of not being able to get the medication you need because of cost. Yesterday, I posted my guest blog for the Help Council of Canada about the cost of chronic illness. Today, I'd like to shares something I posted back in the beginning of The Seated View. This piece is about what can happen before and after getting the medication you need and the importance of timely access to financial assistance:
In December of 2004, I looked into the abyss and the abyss looked back.
It’s hard to write about this – doing so with any emotional truth means going back to a place I’d rather never feel again – but there’s something I’ve wanted to say for a long time and it needs a bit of a back story.
Pain is an oddly isolating thing. It can’t be shared with other people, can’t be described in any way that comes close to communicating what it feels like. It isolates geographically and socially – it hurts too much to go out, spending time with friends takes too much energy and when touching hurts, displays of affection do also. When it gets loud enough, you lose your ability to think and focus.
Early on in 2004, when my arthritis was flaring, my rheumatologist and I decided it was time for the big guns. The biggest, in fact. Enbrel is new and expensive and costs about $23,000 a year, so I needed help from the Trillium Drug Program. When the government gives you tax payers’ money, they’re careful. So as my application slowly meandered its way through the bureaucracy, my life gradually went belly-up.
Things were getting steadily worse and in September, Vioxx – the only anti-inflammatory that I could tolerate and which kept things somewhat tamped down – was recalled. My arthritis flared stronger, blazing unchecked through my body, destroying my joints even further. Painkillers only masked the symptoms and only partly, without preventing the damage.
I’ve struggled with finding a way to describe my life at that time and I don’t have the words for it. There’s no way of talking about it that doesn’t sound like melodramatic hyperbole. I felt like my body was disintegrating, shutting down. It was every kind of pain I’ve ever had and all at once. Pain wrapped me in a sheath of flexible, frosted glass, muting the words of loved ones, a foggy barrier between the world and I, slowly closing in, narrowing my world until I felt shrink-wrapped by it. I felt as if I was a prisoner in my body, held in a far-away place, tortured around the clock, screaming, screaming, screaming, too far away for anyone to hear me and even if they did, they could do nothing to help me.
Christmas is my favourite holiday. Throughout my life, it has been magical, each year feeling like somehow, my family and I enter a parallel reality, one where love is palpable and radiant. Last December, I knew it could be my last Christmas, that my life, as it was, could very soon not be there anymore. I knew that if I didn’t start Enbrel very soon and if it didn’t work very quickly, my life was over. I knew that at in tops 6 months, I’d either be hopped up on morphine in a nursinghome or perhaps my body was indeed shutting down. I felt as if I had terminal arthritis.
I have never been so aware, so fully conscious of everything as I was on Christmas Eve. I opened up as far as I could and absorbed the laughter, the love, the joy in the room and put the memory in a special place in my soul, for comfort, for remembering, to be a safe place to go if I had to leave.
By New Year’s Eve, I felt erased, stripped, burned to a cinder. The pain had taken everything.
Shortly after New Year’s, I was approved for Trillium and on January 7, 2005 at 3:35pm, I received my first shot of Enbrel, went back home for a rest and at 6pm, I woke up a different person.
It’s as simple as that. And as complicated.
Enbrel worked quickly and changed everything. Within a few weeks, the pain levels had subsided drastically, the swelling went down and I became stronger and stronger. Every day, I realized a new thing that I could do and I would laugh and laugh with the joy of it.
Then it spread. As much of the pain left, there was enough room in my head that I could think again, remember things again. I was hungry, starving – for knowledge and for food. I could eat again, things I hadn’t been able to eat for ages. As time passed, my body developed an almost aggressive quest for health, wanting only real food, craving protein and rejecting sugar (I haven’t had a cookie in six months). Strangest of all, how I see things have changed. The world went from black-and-white to technicolour and everything seems a miracle of perfection. Once, when shopping, I was nearly brought to tears by a pepper, such a perfect blend of yellow and orange that it looked like late afternoon summer sunshine in a February pepper. I regularly get lost for hours looking at blade of grass or a feather or the sun glinting off water.
It’s overwhelming. I feel reborn, new, vulnerable, raw, open, intense. Everything’s so intense. I don't know how to be this aware of the beauty of the world and still be a well-functioning human being and so sometimes, I hide in the old me for a few weeks while I catch my breath, then jump back in and fly.
Last year aged me. I feel older, look older – my face is marked by lines that didn’t come from smiling. I feel fragile still. It scares me how long it is taking to get my body back to where I want it to be, it makes me realize that I didn’t just feel like I was very sick. I was very sick.
At times, I get besieged by abject terror at the thought of losing it all – I am not yet done with this gift. At times, I want only to hide from it – it’s too much, too strong, too deep a mystery. I feel as if I’ve been razed, burned to the ground, had nothing left but ashes and then… then someone gave me back my life and a second chance. I take my second life seriously. I see myself as under construction, body and soul, becoming the person I’ve always wanted to be. I work hard to become healthy on all levels, to change and grow every day, to be mindful of the glory of it all and to not resist change, but embrace it.
Mostly, I am madly in love with being alive, delirious with the ability to think and communicate ideas and truth be told, probably a bit unbearable. I feel drunk with it and as most drunks, I have a lot to say.
Every time I get a shot of Enbrel, I send out a silent thank-you to the taxpayers of Ontario.
I am your tax dollars at work.
Thank you for my life.
December, 2011 note: it has been seven years almost to the day since I got my life back and I am still living inside the miracle. I still receive funding financed by taxes to pay for the $40,000 Humira costs every year. Without it, I would be dead. All these years later, I am still grateful every week and sometimes every day. I would like to say again to all of you who pay taxes in this wonderful province of ours: thank you for my life.