There are times when the memory of the pain, the exhaustion, the all consuming list of symptoms, haunts me. It starts like a whisper in my ear, and then feels a bit like falling down a long hole. I don’t really like to remember. This site is something that I dreamed of making since 2008 when the feeling of being a Rebel first hit. It’s so much easier to remember only back to that point. To the point when I knew that I was getting better. To the point when I knew that I was going to be okay, somehow.
So, there are years, and years, and years of pain and illness memories, that I keep stacked up, tucked away… with a nice heavy cloth to hide them in the corner of my garage. They feel like people from the past that turn up, uninvited and want to drag you back to a place you don’t want to go. It’s been a process of uncovering to get back to them. To remember the fear and the anger, the hopelessness and the powerlessness. It’s been a process that had to start with establishing a willingness to go back to them.
The memories seem to bubble up at the funniest of times… when I was almost done with a day of heavy digging in rocky, compacted soil. It was the kind of huge job that I still can’t believe that I can do. Standing in darkening, newly dug beds, feeling hot despite the cold dusk air, and flinging my sweater over to the nearby patio. I wiped my forehead and realized that I had done all this. In one day. All by myself. My first thought was, “oh, no. you’re going to regret this tomorrow, and the next day, and the days after that!” It was a scary feeling full of regret that came just before a flood of memories that left haunting ghosts of pain and fatigue flood my body. A different reality. The old reality. The one where my life consisted of moving from sitting in one place to sitting in another. Of never doing too much, of never knowing when the pain was going to flare.
But it wasn’t my reality. In my new reality I get to spend 6 hours digging, weeding, scraping, planting. In my new reality there is no punishment for such freedoms. In my new reality I wake up the next morning, roll over to see how high the sun is and think about what I most want to do today. In my new reality I get to take yoga classes and keep up with the teacher, straining deeper and deeper into poses, holding out and refusing to let my muscles tell me that it’s enough before the teacher does. In my new reality I get to take friends on a hike up the mountain so that they can see the vast beauty of where I get to live, even when the snow blocks the more reasonable path and our hike qualifies more as rock climbing for an hour. I like my new reality so much more and would like to leave the old one buried somewhere. But I also want to unearth it for you.
I want to dust it off, say things like, “Oh, I forgot all about that!” and show you that it’s possible. That I’m certain that Fibromyalgia isn’t a life sentence.
I want to pull out all the old memories where I’m fumbling forward, blindly, reaching for a health that may never be there for me. I want to share with you all the moments when I was sure that I was getting worse instead of better, where I wanted to give up, where I just wanted to take a fat pill to make it go away for a little while so that I could think about something other than getting better. To crack open those days when I crumbled, and cried, cursed and gave up. I had no road map, no guide, to promise to go on. Just a gut feeling that I would not give up my life to this thing. That I would fight for it. That if necessary I would chase, and rip and pull my life back to me. It was, ultimately that Rebel spirit that carried me through everything that I would have to do.
I’ve had the great pleasure of talking to some of you over the years. Sharing phone conversations, fears, miseries. It makes me immensely happy to know that I am not there anymore, but that I am here for those who need a hand or a shoulder. It opens up that compression that lived on my chest for most of my life and spills out knowing that I would befriend every one of you, hold your hands, help you to bed, tell you that it’s going to be okay… just keep going.
I have dreams that Fibromyalgia is a blip on the map of our past. That we learn not just how to heal from it, but how to prevent it for our children and theirs. I dream that this swell of diagnosis is near the breaking point and that I will not be a rare case for long.
I’m trying to start a rebellion. wink wink nudge nudge
To our health!