Curiouser and Curiouser

Woo two posts in two weeks what is this madness?


I suppose I’m taking a page from Susan Thorson’s book and blogging out the move feels. There are as many of them as she told me there would be. I wrote last week about the wonderful reduction in my pain levels and how tentatively exciting it is to find myself a little freer and a little lighter.

And at the same time, since arriving in California I’ve been irritable, easily frustrated, and a bit testy with Colin (how could I be testy with Colin, you say, he’s so nice. I know, geez, what’s wrong with me). Sitting down and taking a break is nearly impossible. I find myself always needing to stay busy, always rushing to complete the next task. As long as I have energy, I have to be expending it on something useful and perfectly-executed. I have very little patience for myself right now, which is saying something because I cut myself very little slack even on the best of days.

It’s odd now, how paralyzing it can be to have the world open up around me. I’ve always been the sick girl. I’m known for it, especially in the year since that I put this blog post out in the world. It’s the only thing a lot of people know about me. There are some people in my life who only show genuine care for that part of my life and don’t even inquire about anything else. Still, despite accepting it and slowly settling into it as a constant state, I’ve tried not to let it be my whole identity.

Writing that blog post last summer was a big deal. It represented a moment in time where I accepted what I have always been and wrestled my peace from it. Last winter was one of the worst and most terrifying winters of my health history and that moment continued throughout it. I accepted my identity as a sick person.

But now I’m feeling better. And I  might be feeling better for a long time. And I think I don’t know who I am anymore. Like Alice down the rabbit hole, I thought I knew what croquet and tea parties were before, but I don’t think any of those words mean what they used to mean anymore.

In that blog post I wrote: “acceptance is stronger than denial”. Then, I was accepting the broken body I inhabit as part of my identity. Now, exactly a year later, I have to figure out how to accept a somewhat-less-broken body. It’s much harder than I thought.

Being sick gave me leave to rest and relax occasionally. Being sick helped me be calm and patient with others because I knew how patient they had to continually be with me. Being sick boosted my self-confidence because every simple thing I did was against great odds and felt heroic. Being sick forced me to let go of low-priority tasks, embrace a messy life, make peace with unfinished projects, and loosen my grip on my pressing need for perfection.

So how do I keep that peace with a healthier body? Well, so far I’m not doing very well. I can’t sit down until the house is perfect (if any of you have houses, you know they’re never perfect) because my knees don’t hurt enough to force me to let the clutter lie. I get teary-eyed and panicked every time I make a mistake, because my brain isn’t foggy enough to take the blame. I find myself almost relieved that my gut still hurts because at least my diet is one area in which I don’t have to shift my standards. I’ve never been healthy. Daily pain under 5 is so weird to me. It has cranked my perfectionism up to 11 and that shit is exhausting, man.

I thought getting better would be easy. I thought my life would burst into rainbows and butterflies and I’d sing Kum-Ba-Ya around the glowing campfire of a whole soul in a healthy body, roast some marshmallows and never have another care. But my soul doesn’t know its way around this body yet, and we keep fighting over the directions at crossroads.

Don’t get me wrong though, it’s a good journey. I’m so, so grateful I get to do this hard thing of learning how to live with a healthier body, but I clearly have a lot to learn about life from my healthy friends. I’ve had 22 years to learn how to live well in a sick body, and who knows how long this season of better health will last. Every season has its lessons, and I’m eager to learn these on stronger knees.

5 thoughts on “Curiouser and Curiouser”

  1. Wow. Its so ironic reading this when this entire issue has been on my mind as of late. I was literally JUST thinking last night about what will happen when I do feel better in terms of my identity. Just to say the word “when” instead of “if” is so crazy. I oscillate between believing I will find remission with CRPS and gastroparesis like I have found with the lyme…and then feeling like I will be in a wheelchair/homebound forever. It took me awhile to just adjust to being “sick” and now it is weird to think about adjusting again. Glad to hear someone else speaking the words in my head. You are a marvelous writer and I look forward to reading more ❤


    1. I am sending some hope and some good juju for your full remission! While I’m not sure that this is really a long-term remission, I have reason to believe it will be and the adjustment is so much more than I anticipated but it’s such a good adjustment, one I’m grateful for. Thanks for reading. ❤


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