Category Archives: On Life

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.


LEVELS -levels- (levels)

This blog post is supposed to be about my shifting pain levels post-move to Southern California, but the only title I could think of was a line from the Nick Jonas song “Levels.” Which is just the word levels three times.

I’ll admit, I have a small Nick Jonas problem. But then, aren’t all of us male-attracted humans having a little Nick Jonas problem? I mean, look:


The man has smolder down to a science. He does not play.

Now, let’s talk about pain. I know I write about pain a lot, but they say to write what you know, and this is my area of expertise.

From the tender age of 4 I have been dealing with chronic pain. Over the years, I’ve developed all kinds of pain-management techniques including breathing heavily out through the mouth, taking handfuls of pills, thinking very hard about parts of my body that do not hurt, and binge-watching Scrubs.  The pain is worse when’s cold, or rainy, or humid, better when it’s dry or warm outside. Getting treated for Lyme helped some, cutting meat out of my diet helped some (although I do miss those tasty dead animals), but ultimately I lived every day somewhere between 6 and 7 on the pain scale of 1-10. Winters, I’d spike up past 8, summers, dip to the 5 range.

Pain is exhausting. It saps your patience, drains your umph. Long-term chronic pain begins to feel like depression after a while. You live in a fog, lose your appetite for food and for life, and spend a lot of time curled up in a blanket thinking about nothing. My pain has kept me on a short leash. It prevents me from being the kind of person I want to be: the one who’s always there when you need her, who always says yes. It prevents me from working full-time, from keeping my house clean, sometimes even from being able to make it back to the couch after using the bathroom.

It sucks.

My pain responds pretty sharply to the weather. You know how old people can tell when it’s going to rain by the ache in their knees? I’ve been able to do that since my early teens. I used to compete with a 60-something coworker at my high school job to see which of us could predict the rain more accurately. He usually won, but I was pretty close.

I’ve lived in San Diego for almost a month now. It’s dry here. To give my east coast friends a picture: if you straighten your hair on a summer morning in San Diego it will still be straight in the afternoon. Astounding.

It’s also warm. I mean, it’s summer right now, but, as I understand it, even winters don’t get much below the 50s.

And my pain level has been averaging about 3-4.

It’s only been a month but already my house is staying clean. No dishes piling up in the sink or clutter everywhere. There are stairs in this house and I find myself climbing them all day long to make sure things get put away where they belong, instead of letting them pile up around my nest on the couch as I did before. I unpacked all of our moving boxes in about 10 days. My daily 2-hour nap has been reduced to a 20-30 minute power snooze, and I don’t even need that every day. I’ve been out running a few times and it doesn’t hurt.

I haven’t fainted once.

It’s hard to express what this feels like. It’s hard to put words to the sensation of freedom that comes with pain reduction. I’ve long described my joint pain as feeling like nails driven into the joint, grating back and forth with movement, throbbing when they have to bear weight. The other night, we went for a long walk (Pokemon Go, anyone?) and I didn’t feel the nails. My knees felt like they were stuffed with down. It was like stepping on a moving walkway in the airport: all the effort is gone, and you float.

I guess this is what the Tin Man felt like when Dorothy oiled him.

I’m trying not to get too excited. I’m trying not to wake up expecting my feet to hold me. My cane still lives by the front door, and I keep my early afternoons open in case I need to rest. Instinctively, I lean on the railing when I descend the stairs, and I still always put my feet up when I sit down.

After 22 years on the roller coaster of improvement and deterioration, I don’t want to let myself take any of this for granted. But damn it I’m going to enjoy every second of this season, and I’m going to get a lot of stuff done.

Because that’s all we can do, right? Take what you’ve got, and work your ass off. This past winter my pain was at a record high, with all kinds of neurological symptoms to boot. Yet, still, I wrote, edited, and began querying a novel. Just think what I’ll be able to do with less pain! Maybe write two novels! Maybe four!

Speaking of which, I’ve begun writing book two of the series I started last fall. I’m still working on finding representation for the first book, but that’s no excuse to slack off. Maybe, if things keep going well, I’ll have a teaser excerpt to share with you all soon.

Thank you, everyone who supported and loved me through this move. I think it might truly be everything I had hoped it would. Come on, everybody, get tentatively happy with me!