a crack in a happy face reveals a sad face underneath

A Confession: Things Are Hard

When I get dark, I get really dark — but I don’t think there’s anything wrong with confessing it. In fact, why keep it in — why let the engine of emotions whir and whir, getting us nowhere? I chose to believe that when we speak the words that burden us, we release the valve a bit. It’s like a bloodlet, sort of.

If it sucks, say it. If it’s terrible, admit it. If it’s lonely, sing it.

The past few weeks I’ve been in a dark place with ankylosing spondylitis. I mean, it’s a relationship; it ebbs and flows. I still turn to my daily management techniques — dedicated movement (I try for daily movement of some sort). I still manage my stress. I still try to get sunlight and seek joy. But like I’ve said before, you can do everything right and still suffer.

That’s a tough pill to swallow, especially for me — someone who believes I have some control, someone who wants some control. Someone who thinks, “if there’s something broken, there’s got to be a cure.” I know this isn’t always true. I know suffering and loss occur, and sometimes we just stand by and watch. Existentially, this keeps me up at night, but I’ve not figured out the solution, yet, so…here we are. In the proverbial confession booth: Things are hard and I hate it.

I’ve been feeling like my body is betraying me

Sleep has become elusive, terrible, unattainable, dreaded. I toss and turn and wake up.

The pain is sometimes pretty bad and then all of sudden awful and I can’t predict it all the time.

The discomfort in simple activities is maybe what gets me down the most. Walking through the park, getting coffee with a friend, having a day with my partner Ben — it’s all great until suddenly I feel like I can’t really walk and I’m hobbling. Then I hide the pain and just sort of “deal,” which sucks. I want to scream, “Hello! I’m here with you, but so is my shadow friend, AS.” It’s like just a small part of me is held back in some shadowy vortex of pain wherever I go.

How could I have ever taken the pain-free days for granted?

Then there’s the fact that very few people do get it, and by talking about it I worry that I’m boring them, or seeming histrionic, or seeming like I want special treatment or pity. I don’t. I don’t really know what I want or need — but it’s somewhere between “I hear you and believe you,” and “that totally sucks.”

Sometimes I find myself literally thinking, “I’m only 35. Life is going to only get worse and my entire life will suck.” I think, “How did I get this disease? Why was I genetically chosen to bear this?”

It’s some flabbergasted denial and aggravation that I thought I’d gotten past. But it’s a roller coaster. The grief ebbs and flows, back and forth, and that’s okay.

Sometimes admitting it, acknowledging it, and sitting in it is the key.

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