One night a couple of weeks ago, I got a call from a hyperventilating mor, telling me to turn on the news rightnowthisveryinstant! Which I naturally did, as I always do what my mother tells me. Well, when it suits me, anyway. The women in my family are very much like cats that way.
The reason for the maternal order was a news report about TNF blockers, like Remicade and Enbrel. It talked about how drugs like these apparently triple the risk of certain types of cancer. I knew there was an increased risk, but I hadn’t known it was that high – even allowing for several grains of salt due to standard media fear-mongering and half-reporting, it felt a smidge beyond my comfort zone.
For a while now, I’ve been struggling with finding joy again. The winter was hard on me – my pain levels increase with the cold - and after months and months of dark and dreary, I’d misplaced my optimism. I’d remember last year, before the fall’s neverending whiplash took over and wouldn’t be able to connect to that sense of wonder, of being madly in love with life. My dream had became a reality and once past the honeymoon period, I had to find a way to live with the reality bit – in the fantasy, there never is any crap, is there?
At first, I regretted watching the report – after all, I’ve worked really hard to repress that knowledge. Then, fairly quickly – within minutes, actually – that changed. Talking about it with my poor, freaked-out mother, I told her, very bluntly, why I am taking that risk and in so doing, reminded myself of something I’d almost forgotten.
Because I believe that without Enbrel, I would likely be dead. Because if Enbrel hadn’t stopped the progress of the arthritis and the pain, I believe that either my body would have shut down or I would have exited by choice because it had finally become too much.
I may bitch about my pain or struggle with finding acceptance of new limitations, I may resent having to rest for a couple of hours every day, I may be furious that I can’t dance anymore, that I’ve become sort of fragile, that I won’t be able to hold the Tinks, my lovies, for much longer because they – as babies tend to do - keep gaining weight, that I have to spend a good 5-6 hours a day just maintaining my disability, pain levels and new and interesting crap. That I likely won’t get back to where I would like to be, that maybe this is it.
But here’s the thing. In between all the things I have to do and despite all the things I miss, I am alive. More alive than I’ve ever been. I’m writing, making new friends and present with old ones, kissing my lovies, taking pictures, seeing the world and my place in it differently than I ever have before. I am becoming who I’ve always wanted to be.
For years – decades, really - I’ve been saying that I wanted to live, not merely exist, yet mainly just… existed. These days, I am living. And grateful every day – even the days where I’m angry or feeling low. I choose life. Life. With all its messiness, pain and joy. With all its risks.
I choose life.