I Have Psoriasis and Why You Should Care

July 15, 2014 at 2:15 pm (Community) (, )

I received an unpleasant diagnosis yesterday. Not a terrible one, and not a particularly scary one, but a real, uncurable, and frankly, kind of icky one. I have psoriasis, which is thought to be an auto-immune disorder of the skin. A real, live disease – golly! (You know that expression “God only gives you as much as you can handle?” I’ve often thought how lucky I am that God knows I am a serious wimp).

I’ve only been googling “psoriasis” nonstop for the past 24 hours, so I’m far from an expert, but here’s what I do know. I have raised red patches all over my torso, with some on my arms and legs. Some of them are scaly and sort of grayish. Some are blob-like and some are more dot-like. They don’t hurt or itch and the vast majority are covered up by my clothes, so I’d say I’m pretty lucky. I’m trying not to be too down about it, as in the grand scheme of things – brain cancer, starvation, war – this is pretty minor, but I’m terribly vain, and I have an ugly rash. So that sucks.

I’m still figuring out what my plan of action is for treating it. There are drugs I can take and creams I can use, and maybe I will eventually, but I don’t want to yet. There are other options, crunchier, alternative type things, and those are more my speed, so I’ll explore those first. (At first I told Sam that if this mystery rash didn’t go away I was going to connect the dots and tattoo constellations on my torso…at this point it would be more of a supernova, but who knows, maybe I’ll still do it).

Anyway, here’s why I’m writing about what would otherwise be a pretty private and kind of embarrassing subject. It dovetails with something I’ve been thinking about for a while now.

The Internet is awesome. Look how much I learned about psoriasis in one afternoon! Social media can be too. I’m in touch with family and friends all over the world on Facebook. Hundreds of people wished me a happy birthday on May 29. I play Scrabble every day with my brother who lives five hours away. I hear about new jobs, new puppies and new babies almost instantly. I can feed my real estate/decorating addiction endlessly on Pinterest, scroll through beautiful pictures on Instagram and get a quick laugh at my favorite celebrities’ Twitter feeds. I’m fairly plugged in, and I’m fine with that.

But it’s only part of the story. It occurred to me the other day that you rarely see someone posting, “Told my eleven-year-old to shut up today” as their status update. No one tweets “Man, hemorrhoids suck!”*** So picturesque vacation pictures, yes. Lousy parenting moments, not so much. Selfies with celebrities, for sure. Gross medical conditions, no way. I scroll through my news feed, and it’s like that Lego movie song: “Everything is awesome!” which is great, but not true. Not for anyone. I am lucky beyond belief…in my family, in my friends, in where and how I get to live and in what I get to do, but you know what? The most perfect-seeming life has darkness in it. Everyone, everywhere, is battling something. Like fucking psoriasis.

What’s my point? I dunno. I don’t want to tell anyone what to do, unless it’s my kids, and I mostly want them to figure it out on their own too. But for me, I need to hear about people’s triumphs AND their struggles. I ordered a print that says “I will not compare myself to strangers on the Internet” because it’s insidious, comparing yourself to people’s carefully presented public personas. I don’t want to envy other people, I want to be grateful for what I have. But sometimes when all you’re seeing is the highlight reel, it’s hard. My sports nut son likes to watch the highlights of last night’s game when his team wins. And when his team loses, he’ll tell me that he’s watching the lowlights. I think it’s important to talk about both. So, you know, now you know.

***Those are totally hypothetical examples. Unless they aren’t.

 

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Ujjayi Breath and the Burden of Being Human

July 8, 2014 at 12:50 am (Community, Faith, Yoga) (, , , )

My breath is ragged and uneven, here a grunt and there a gasp. My mind wanders, to grocery lists and carpools, to doctors’ appointments and dinner plans, but I reign it back in, and try, for the umpteenth time, to smooth out my exhalation, to lengthen my inhalation…to yoke my breath to my movement to my brain. I’m at yoga, and I can hear the ujjayi breath of the men and women around me. Breath with sound…it is even, ineluctable. It washes over me like the waves of the ocean. I close my eyes, even though I’m not supposed to, and bathe in the sound. I can’t add to it. If the combined breath of the men and women in that room is the Atlantic Ocean, mine is a little creek, so insignificant it dries up in the summer, so unimportant it’s short i, not long e.

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My mind wanders again, but this time to the words of the gospel I heard yesterday at mass.

“Come to me, all you who labor and are burdened,
and I will give you rest.
Take my yoke upon you and learn from me,
for I am meek and humble of heart;
and you will find rest for yourselves.
For my yoke is easy, and my burden light.”

I heard the same gospel at a funeral a few weeks ago. “The yoke doesn’t seem easy or light,” said the priest. “It only becomes that way because we share the burden together.” I held onto that thought as I choked my way through the familiar prayers and hymns, adding my voice thick with tears to the rest of the congregation’s. “There is nothing I can say or do,” I thought. “But I am here, with these people, saying these words and singing these songs. It is nothing, but it is all I can do. Maybe it is enough.”

And so I join my little creek to the ocean of sound as I move through my yoga practice. In and out, labored and burdened, but shared. What I have, I will add to the room. What I can, I will give.

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