Settling In

My Crohn’s diagnosis is fairly new, just a couple of months so far even though I’ve had symptoms for over a year. Some of the symptoms have gotten worse, some have gotten better, some are new. So I’m still learning how the disease is going to manifest for me. I don’t know yet if I’ll be one of those people who goes into remission or one whose condition doesn’t respond to medication. I don’t know if my symptoms will get worse or go away or come and go. I don’t know yet if the adjustments I’m making now to my diet and lifestyle are temporary or lifelong. I don’t know what my patterns are yet. But I’m learning! Everyday I feel like I learn more about what my body needs and what it doesn’t need, I learn more about what feels good and how to maximize those feelings. I’m learning how to really, deeply care for my body in a way that just never occurred to me before. I’m becoming gentler and more forgiving of myself. Mainly because even though the disease is unpredictable and destructive, I kind of understand now that my body’s natural inclination is toward wellness. Even the destructive inflammation is my body’s (overzealous) attempt to be well. And knowing that helps me be a little calmer about the whole thing.

I didn’t know anything about my body’s drive toward healing until last year when I was run over by a motorcycle, suffered multiple fractures and got to watch them heal. In fact I resented all kinds of thing about my body, always wanted to change my weight or my height or the thickness of my legs, and even while I watched my bones heal, I still thought that the process was something I could and had to control. In my mind I couldn’t figure out how to make the bones fuse, make the swelling to down. I couldn’t even conceive of what a normal body would feel like again or how I could make it happen but I tried! I actively and enthusiastically iced and elevated and flexed and did everything I could to help the process along. And in the end I realized that while that stuff may have helped, my body had it under control the whole time. It knew which cells to send where, what to add and take away, and in its own time it righted itself. Knowing that gives me tremendous faith that it’ll work this out too, as long as I do my part and be gentle and keep faith.

One of the things that’s helping me adjust and settle in is meditation. I practice mindfulness daily, really just by quieting down and experiencing the present moment. Meditation has made a tremendous difference for me already!  I’m learning to spend more time in the spaces between the pain, and that makes the spaces feel bigger and the pain smaller. I’m actually less scared of the future now than I was before I got sick in the first place. And I try to approach my symptoms with a sense of curiosity rather than dread. This is all helping it feel less cataclysmic, and more manageable.

Book Review: Vampires in the Lemon Grove

I’m reading Karen Russell’s new collection of short stories and so far this one is hitting me right where I like it. “Reeling for the Empire”, a story about young women in Japan during the Meiji empire who are conscripted to spin silk in a factory and find themselves permanently altered by the commitment, stands out as a potent example of why I fell in love with this collection so quickly.

The story touches on all my sweet spots- magical fantasy, introspective and fascinating female protagonists, and my favorite pet fascination with Russell in particular – the female protagonist who believes herself to be the agent of her own undoing. Russell has written this type of character before in Swamplandia and in St. Lucy’s Home for Girls Raised by Wolves, a character who is struggling to understand the cause of her great transformative trauma, and to devise a way to transcend it. The meditation on regret in this iteration is especially captivating, and the narrator distills her understanding of it beautifully when she explains “Regret is a pilgrimage back to the place where I was free to choose.”  How lovely and apt to think of regret, or any internal processing of memory or imagination as a journey, and especially to view the kind that you must repeat and revisit as pilgrimages. For gems like this it’s been a joy to watch the author develop over time, and as with all my favorite authors I derive as much pleasure watching them negotiate and construct recurring themes over the course of their careers. In this way, Russell joins the likes of Elissa Schappell, Don Delillo, and Jonathan Lethem, contemporary authors whose new works will always have a spot reserved on my “To Read” shelf.

20 Best Rock Clubs in America

Rolling Stone has posted a list of the 20 Best Rock Clubs in America.

I’ve been fortunate to have worked for 10 years (collectively) at the Troubadour & the Great American Musical Hall, and they’re both in the top 10! I personally think they’re some of the best rock clubs in the country, but it’s always a thrill to see them honored this way.

Check out the full list!

You Could Find Me In the (Autoimmune) Club, Bottle Full of Bud

I always sort of knew I might develop an autoimmune disease at some point. The women in my family are riddled with them, and they get them fast and hard. My mom died of lupus 3 weeks after her 52nd birthday. My grandmother developed rheumatoid arthritis in her mid thirties and was wheelchair bound for most of her life thereafter. All of my aunts and many of my cousins have some form of thyroid disease, rheumatoid arthritis, lupus, or some combination of them. So I had a good sense that something might come up for me eventually. I got tested every few years for lupus and R.A. and all my tests were good – my blood pressure is low, cholesterol too, my diet’s clean, I’m physically active, no joint pain and I could run three or four miles without passing out, so I thought I still had a long way to go before I developed problems. But, like I say, everything happens, especially change.

About a year ago I started having digestive problems. It came on slowly at first, just discomfort after eating, but more and more I started noticing that food, in general, was making me sick. As my symptoms got worse, I tried various elimination diets, trying to identify what was causing so much grief – gluten? dairy? alcohol? caffeine? sugar? But no matter what I took out or put into my diet, I kept getting sicker… and sicker. I got to a point where food wouldn’t stay in my body long enough to digest anything. I was bloated, and pale, and in so much pain that I basically trembled constantly, and I’d gotten so used to it that I didn’t even notice I was going through my life like a beat-down robot. Then my boyfriend and one of my best friends teamed up and made me finally go to the doctor. It took about 6 weeks of increasingly unpleasant tests for the doctor’s to identify what I have as Crohn’s disease and confirm that yes, in fact it was all food that was making me sick, or rather it was my immune system that was making me sick in such a way that no food could possibly feel good. Crohn’s is an autoimmune disease where your body sends too many white blood cells to parts of your digestive system causing inflammation, ulcers and erosion of various membranes, so that when you eat, it’s kinda like shoving food into an open wound. When I saw the scopes of my insides it looked like I’d been eating shards of glass and battery acid for days.

Then, just as my doctor was coming up with a treatment plan,, my immune system continued to get hopped up like a college girl on Cuervo and sugar-free GoGirl, and got all ratchet on the hardware in my (formerly broken) leg. After almost six months of steady healing, my leg started doing a historical reenactment of what it looked and felt like when it was first broken (swollen to twice its normal size, impossible to put any weight on it.) And it kept getting worse! Red, blotchy, firey hot, it looked like I had dunked my leg from the knee down in boiling water, I assumed I had reinjured it, but when I mentioned it to my trusty GI doctor, she identified it as an extension of the Crohn’s disease. So now we know that what’s going on is a more general inflammatory condition and whenever my body feels stress, it starts ramping up and goes off to fight The Great War somewhere in my body, and if there’s no war to fight, it damn sure starts one.At least now we have a diagnois(ish) and a plan.

Knowing that autoimmune disease is triggered and aggravated by stress, it made perfect sense that this had started when it did, 6 months after I was run over by a motorcycle, amid all the stress of balancing an intense physical therapy schedule, full-time work, a 10 mile commute on public transportation on crutches, fighting daily with hospital accountants and my insurance company, and learning that my boyfriend and I were on our own because the dirtbag who ran me over had no insurance. Stress-wise, I was fully primed for my immune system to overreact.The good news about that, from my perspective, is that because it responds so dramatically to stress, it’ll probably respond well to stress-reduction.

So while we convince my white blood cells to go home and sleep it off, I’m on steroids, anti-inflammatories and a super limited diet of basically white starchy food and meat. I’ll write more about the details of the diet and the creative solutions my boyfriend and I are coming up with to accommodate the new restrictions and challenges. If you have a similar situation, or a blog with recipes or tips, please feel free to share them! (and good luck with your healing!)

 

The Grass Is Greener

So I was doing my daily hate-read of Refinery29 this morning.

This usually involves me clicking through some of their fashion slideshows and thinking “Are you fucking kidding me with this shit? What are they even selling here? Are they encouraging me to wrap myself in that hangover blanket of depression and sit in a cold miserable garden of mildew? Is that fashion?” Then I email any articles that particularly stick in my craw to the friend who introduced me to R29 in the first place. We have a back and forth thing now where we send each other the most obnoxious thing we’ve read on any given day. It’s like playing “What’s Grosser than Gross” but with ugly clothes.

Occasionally they do a profile series showing the “coolest” or “hottest” or “most awesome” bachelors a town has to offer. The San Francisco one was priceless and made it seem like San Francisco was just full of assholes. I shared the link with a male friend who said the article made him want to vomit on his own dick and marry his girlfriend, and while I thought his response was vulgar and gross, I totally saw his point.

So when I saw the profile on New York’s single guys this morning, I had to click through just to see if it’s as bad on the east coast as it is here (“It” in this case meaning both the dating scene and R29s journalistic talent).

And would you believe what I found was not a hateread at all! Instead I found, in a line from one of the guys they profiled, a quote that actually resonated with me! Here goes:

“The grass is greener when you water it, not on the other side”

It was a sweet reminder to spend energy on what’s around you instead of always looking for something else.  Nourish the life you have. Nourish the relationships you have. Nourish the community you live in. Of course this doesn’t always work and sometimes you do have to move on from things, but it’s a good starting point, and if the lawn goes to seed anyway, at least you can move away with a clear conscience, knowing you did the best you could.

That’s my Friday motivation, and I’m damn glad I got it from such an unexpected source! Now I have proof that all my hours of hatereading have not been in vain.

Have a great weekend everyone!

George Saunders on Jangly Sentences and the Intentional Fallacy

Well, this made my morning. I love George Saunders!

Biblioklept

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Positive Ain’t Where I Live

This is my first blog post in a very long time, and I’ve been meditating on how to open back up to writing, to sharing publicly, to engaging after a tremendously difficult year. Should I go with something funny to break the ice? Should I start with the story of the really hard year and get that out of the way? Should I begin with something boring and quotidian and slowly build up to the big stuff? But I realized that whatever I write is going to be confusing until I make one thing clear: Life is hard.  And all the good and fun and fascinating and transcendentally joyful things that come along with it ride on that foundation, and everything I write and think and know and do in the world rides on that foundation. In this world of wild of wisdom, that’s our starting point.

Sure, I say a lot of positive shit, and I do a lot of positive shit, and I can even put a positive spin on some really negative shit, but I’m never going to forget where I came from or what brought me here. And readers will stand a better chance of understanding me if they’re aware of that.

The one thing that most baffles me is how many people there are who don’t know that life is hard. I struggle, daily, to make sense of it, and it always comes back to startle me. There are many, many people in the world who simply do not know. And when you mention truly difficult experiences to them, you’re met with anything from bemused oblivion to outright contempt. They either don’t believe you, or they resent you for being negative. But worse than the people who have no clue, are the people who think they’ve suffered and survived hard times and give themselves an awful lot of credit for it, but when you look deeper what you find out is that their “struggle” was a basic quarterlife crisis, and that their daddy was the one who actually swooped in to fix it all with sound advice and financial support. These are not my people. I have neither time nor tolerance for them. I don’t wish them harm or suffering, but I don’t wish to give them audience either.

I believe in the hard times, I believe in the gifts they bring. But what I believe most is that it’s the serious work you do to turn suffering around that shows you the sincerest beauty of life. The wisdom comes to you through suffering, not at the threshold of suffering, and certainly not from mere proximity to suffering.

I don’t believe that what doesn’t kill you makes you stronger. You are already more than strong enough. The things that nearly kill you are simply opportunities to flex. But let’s be frank about the fact that there are things out there that might nearly kill you, and the trick isn’t in pretending those things aren’t there, it’s figuring out how to deal with them.

So that’s where I’m coming from. It’s not a popular perspective, but it’s mine and I’m going with it.