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A couple of weeks ago, I watched a documentary called 65_RedRoses about a young woman with cystic fibrosis who was waiting for a double lung transplant. It’s a nailbiter and you need Kleenex and in the end, when you see her on the Dragon boat team of people who’ve had transplants, paddling furiously, you are as happy as if she were a friend. It’s the best argument for signing your donor card I’ve seen in a long time. At the end before the credits, there is some text, information telling us that Eva was living on own and planning to finish her university degree.

And what struck me about that was the plans. That instead of being static, of living through each day, of the disease being your life, now there are plans. The difference between living inward and living outward. The difference between constant struggle and laughing in the sun.

I’ve been frustrated lately, frustrated that I’m not where I want to be, that it’s going to take me a long time to reach that next goal, that I feel I could get there if only I didn’t have to work so slowly because of my pain and energy levels and after I watched that documentary, it hit me that I’ve forgotten something.

I’ve forgotten that I am exactly where I’m supposed to be, I’ve forgotten that having plans is the miracle, that this lightness there is to life (when my head isn’t firmly stuck up my arse) is what it’s about. That ultimately, it doesn’t matter what I accomplish, it doesn’t matter how long it takes me, what matters is the journey. What matters is that I’m working on it.

And it hit me even stronger this past week. I’ve had to skip a couple doses of Humira, once because the side effects were piling up and another because I had a sinus infection and by last weekend, I was “enjoying” the beginnings of a flare. It always starts in tendons and ligaments, creaking, pain, a pain deeper, stronger, so much more than the regular pain that I’m used to, that can still be pretty intense, but not like this. And it accompanies every movement, as well as no movement at all and not even a double dose of painkillers will make it go away, only mask it, while you’re somehow very aware that it’s just under that mask, ready to roar into attack again. And then the swelling in my feet starts and I begin to count the hours until I can go to my doctor and tell her I don’t care if I’m sick, don’t care about anything, justgivemethedrugnow. And on Monday she did and an hour later, I was busy doing something when I realized I hadn’t noticed when the pain went away. Instead, I’d just moved seamlessly from it blaring as loud as a jackhammer outside your window to receding into the background, largely ignorable, clicking back into my life being at the front, the pain pushed back. And I cannot tell you how weird it is to realize that you got back on track without noticing the moment when you did.

My life is so full – some, including myself, might argue that it’s a little too full – but in amongst the busy and the drive to do more, go further, fly higher, I lost sight of the fact that I am doing, am going, am flying. In this sense that I am now so well and have been well for long enough that I forget for days, weeks, not just one or two, but four or six that hey, take a look around – it’s all rainbows and unicorns and floating on a cloud of bubbles that rise up into the sky towards the sun while I get lost in the laughing.

I forget. And it takes stronger and stronger reminders to remember the miracle, because the miracle has become my everyday. It’s getting up in the morning, going to work (luckily, not far, right there in my bedroom/office) and losing track of time because I’m immersed in a task, waking up usually when my shoulder screams loud enough to penetrate the focus. And then I do my grocery shopping, feed the cat, have endless meetings because I volunteer too much, make plans for the next place to go in my career, make plans to go out – me! Going out! To things that happen in the evening and require tickets! – and spend time with my family and friends, laughing with the kids and hang out with my love.

And can we just take a moment while my world rocks with what has happened in the past year? Where instead of looking at what I don’t have (yet – my god, there’s a yet!), I look at what I do and marveling, boggling are not strong enough words to convey how I feel when I look at this change. Who I was then and who I am now. How my life was and how it is now. And it occurs to me that perhaps I need to not run so fast I can’t see what is right in front of my face.

That perhaps I need to slow down and look and giggle with the joy.