Can’t Touch That

I write this from the floor. My knees are scrunched up in front of me and my caps serve as wrist stands. I’d write at my desk–it’s literally called a writing desk–but I can’t sit there long before my neck goes out which causes a headache which causes a sad face. Like this :( That’s exactly how I look when I’m feeling bad, if you were wondering.

Today I woke up feeling rough. Rougher than usual. Still, this is nothing new, and I’ve learned how to let go of plans and make myself useful in other ways from bed. But I was impatient today. I had things on the to-do list that I wanted to tackle and I couldn’t. I confront this a lot, but today it made me mad.

I’ve been trying to make some changes in my life: health-wise and beyond. I’ve been proactive about eating better and since some recent lab work detected gluten anti-bodies in my gut, I’ve cut that out. I don’t miss it that much, in fact it’s high time to go without it. Gluten free is so trendy right now! It’s just that I’ve never liked when people are picky at restaurants. And now I’m that girl, ordering the burger without the bun and asking the ingredients of sauces. Oh well.

Besides the diet, which I’m still configuring, I’ve begun organizing closets and getting rid of excess anything and attempting to follow some type of schedule. There’s catharsis in things like this, but they can prove to be difficult and today is the perfect example of why.

Yesterday I cleaned out this closet in the living room, which has somehow collected my nieces baby clothes, my ex-boyfriends computer, a guitar with a missing string, and THREE brooms among other miscellaneous clutter. Throwing junk away can be a holy experience, and I was beaming throwing excesses out. After that I went to the bookstore to check out a few recommendations from a friend. I found them and then walked around a while. I like the atmosphere there and the quiet way people speak. Then I went to the grocery store for a few things that turned out to be a lot of things. My legs were burning by the time I got home and I knew I’d probably overdone it. (Wuss) But I was in my Martha Stewart zone, or something. When I began to put away groceries I noticed that the fridge could use some cleaning. I took everything out, pitched half of it, washed the drawers in the hot soapy water, wiped everything down well, then stocked it. Admittedly I sat there and opened and closed the door a few times just to relive the magic of my newly pristine fridge. I was done around 10:30.

The truth is I didn’t do that much. And that’s the ticket! You don’t have to do that much in order to feel this bad the next morning. It feels like you ran a marathon on a whim and at the end a bunch of people gathered around and kicked you for no reason. Dicks. When I sat down I realized my whole body hurt and my mild migraine I had all day had turned into a full-blown one. I took some of my 25 pills, then my nighttime pills, read a little and went to sleep. I slept pretty rough, but nothing too out of the ordinary.

When I awoke the next morning to the pool guy knocking on the glass door I felt the way Gary Busey looks.

Good Morning!

Good Morning!

I could barely get my eyes to open fully by the time I got to the door. I’m sure I looked like a zombie in pink pajamas. Anyway, all the “overdid it” symptoms were back. Achy, dizzy, heavy and the worst of them all: weakness. Because there’s nothing to do for that except wait it out. And that’s especially hard to do when looking at the list I’d optimistically made yesterday of all these tasks that needed crossing off. I really wanted to clean out my clothing closet, and sort through medical bills. You know, fun stuff! They would have to wait.

The thing is, it’s OK. This is how the illness works and I overdid it, just as I’ve done hundreds of times before. I’ve learned plenty of ways to make the day count from the couch. I’ll rest and improve over the next few days and remember that compared to the past, this is truly small potatoes. I don’t write the details of my day to whine or seek pity, but to show what a huge disruption the illness can be. It feels like I am always playing catch up with the rest of the world, and this is probably why. I just tried to plan two days and it went off track. There is such a huge variable to consider and it’s often anyones guess, so sticking to things is a guessing game. Beyond that, I write because I’m still trying to figure out how to do this. How to have a fulfilling life, one that I am proud of, without upsetting the sleeping sick dragon inside me. It feels like a continual conundrum, and maybe it always will be.

Life keeps changing and I constantly have to re-mold how to live it. I am in a new relationship which is great. But it’s also a new challenge. Introducing him into my weird sick life has been difficult on both ends. The illness is confusing, my life lacks structure and the circumstances just aren’t normal. I forget that my life requires explanation, even defense sometimes. In the beginning, I loved the escape I felt meeting someone new who didn’t know me as a sick person. It’s like visiting a place you’ve never been before and feeling like you can be anyone because no one knows your past. I thought we could keep going without having to confront it seriously. That was stupid. But it felt good to me, good I hadn’t felt in a while, and I went with it. Obviously that approach dissolved and at some point we both had to face the music.

I don’t always consider that to outsiders, my life isn’t normal. I forget that most people aren’t sick. They don’t have to take a bunch of pills in order for their bodies to do what they’re supposed to. They can go to work, attend social outings, fall asleep on their own at night, and wake up and do it again. Something I did once but now I am in awe of. I forget that being sick effects other people, not just me. I realized that being continuously ill and taking pills all the time can make other people uncomfortable. But the truth is it does, and that’s OK too.

I think the hard part for partners of sick people is that they feel helpless. They are constantly reminded that we’re sick, but there’s not a lot they can do, or say, that will make it better. And that can wear on a person, as much as it wears on us to be sick. In my case, the healing doesn’t come from words. Nothing they can say will fix it. It’s more a matter of being there– sometimes a hug, holding my hand, or just laying together, feeling the warmth of someone else’s humanness, and yelling LIFE IS HARD BUT IT’S OK! Figuring it out and adapting to what life with chronic illness means isn’t very easy, but it continues to provide me a lesson in surrender, for those around me, too. Sitting with the pain and accepting circumstance and just allowing the moment.

I think the thing to remember is that even though illness interrupts plans and SQUASHES OUR FUN SOMETIMES, it really can’t take away the ethereal, elusive thing that makes each of us specifically human. We are still who we are underneath all that moaning (I find I sigh a lot) and illness can’t touch that. In fact I think if we try really hard and lean in deep to our experience, we’ll find it can make us an even better version of ourselves. I forget it sometimes during dark days, but somewhere in my depths I know it to be true.

Health, Happiness, and Ultra Clean Closets

One Month and the Buzz

So, I took a month off. I’ve missed you.

Health-wise I’ve been up and down, but more ups I think. I’ve been out of the house doing things; normal people things, 29-year-old things. Living like a normal person doesn’t always fair well on my body and a few times I pushed it too far and paid the price, but somehow it felt worth it. My soul needed to get out in the world and roll around in the dirt. I felt like Monty when he sees a squirrel and I unhook the leash–caution to the wind, full force ahead. Maybe 50%. I’m often battling this fear that if I’m sick for too long I’ll go to sleep one night and when I wake up thirty years will have gone by and I’ll have barely moved. It’s not always easy but I know it’s important for my soul and my psyche to get out there and try a little. So I do. I did. And I experienced these moments where I felt so intensely alive I could feel it buzzing in my fingertips. And that’s the stuff of life people! The best kind of little reminders.

A while ago I was invited by a friend to attend a three-day meditation retreat in Magnolia, Mississippi. I’d never been on a retreat before and I felt apprehensive at first. For starters, I felt angst about whether my body would hold up through the weekend. Secondly, I had this cliché vision of long-haired hippies dancing naked around a fire, sharing their “truths” or something. But when I learned it was a silent retreat, I knew I had to do it. I don’t know if I’ve made this apparent, but I sort of hate meeting people. I cringe at smalltalk and I find strangers questions difficult and exhausting to answer. I know it’s just part of conventional social norms, but this question of “What do you do?” causes me an intense five-second panic attack, and introductions almost always go there. To give an honest answer comes with this pressure to provide a back-story, which is long and convoluted. I expect strangers have as much interest in hearing these details as I do telling them, and sometimes I feel like rolling my eyes at my own reality. But I haven’t yet figured out a way to give a succinct honest answer that leaves everybody comfortable. I think I’ll start answering ‘waitress’ and save everyone five whole minutes.

So this the idea that we wouldn’t have to talk to other people, including our assigned roommates, totally sold me. But I still felt angst about my health hovering in the background. This is nothing new. I confront this fear all the time making decisions because my health has failed me so many times before when I’ve really counted on it. So I don’t anymore. It’s hard always having to maneuver around this invisible thing in your life that you don’t even like. But this is my reality and hating or fearing it does me no good. So I considered the worse-case scenario; I crash. Even if that were the case and I spent the weekend in bed, what were they going to do? Strap me to a chair and force me to meditate? I figured I’d be OK. So I said yes. And there’s something pretty revitalizing about saying yes to something new, especially when for so long these kinds of opportunities were an automatic no.

I wrote an essay about the weekend and I’ll post that next. I’ll say now my favorite part was eating lunch next to my friend in total silence, only making eye contact every now and then. There’s a lot of space and freedom that opens up when no one feels the need to talk. They call it “noble silence” and I think we could all use a little more of it. It rocked!

After that I was invited on a weekend trip to the beach where I would share a house with 12 other girls. So basically the opposite of the silent retreat. I am a total beach bum and don’t feel I get enough of it, so I went. And it turned out to be a really awesome and fun weekend. I was feeling pretty sick the day we left, but I was also really craving the sand and the air and warm gulf water. (I’m a pansy about water temp) I knew I’d feel better once I got there, so Emily and I drove the three and half hours there and watched the sun set while crossing the Louisiana/Mississippi border. I felt really happy in that moment. The sunset was the kind that changed colors every 10 seconds and was remarkably beautiful over the Louisiana marsh. I tried to capture the spectacle made by all the intense colors, but a picture never does a great sunset justice. It’s like holding a rookie drawing next to a Monet. Maybe it’s better to just pause and enjoy the splendor of a disappearing sun. It’s such a short-lived pleasure anyway. Watching them always make me feel grateful.  We finally arrived and learned that our house was next door to the classiest bar in the South: Florabama. So naturally, we went. Never heard of it? Here’s a peek.

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No Pets

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Every time I visit this bar I am overwhelmed and baffled by it. It’s three stories (possibly more, I don’t know, I’ve gotten lost in it twice), hosts multiple bands on different levels, and is jam-packed with drunk people of every age. Every surface is a proverbial guest book where people under the influence leave their mark for the world to see. I’m always riveted and only sometimes horrified reading the graffiti that adorns literally every surface. I started photographing the funny ones so I could laugh later and have some weird photographic keepsake of the trip. So I took a photo of the surface of the bar we were ordering from.

Damn you, Laken

Damn you, Laken

We couldn’t stop laughing at the idea of some angry person pulling out a marker and deciding to write that Laken Franks sucks Donkey Penis. A while later I entered the Florabama bathroom, where I confronted many, so many more messages, in every color, on every surface, including the toilet seat. I took some more photos because so far no one I met was as interesting as this graffiti of the world. I liked the idea of one picture having the mark of so many strangers, many of whom likely have no memory of the literary gems they left. And now I’d have a piece of it and they’d have no idea about that, either. So what did I find while looking through those photos later? Another sentiment for Laken in the bathroom stall.

Damn you again Laken

Damn you again Laken

Only this time Laken’s a baby murdering whore. I couldn’t believe the name showed up in two photos. Pretty crazy odds given the volume of surface area in that place and the amount of angry messages. I wonder who Laken Franks is and what she (he?) did that left someone upset enough to get creative with their insults and tattoo them on two of the walls of the worlds classiest bar. I shall never know. I’m just glad I was alive enough to be there and capture it. My fingertips were buzzing at little moments like this all weekend. But mostly when I watched the sun rise on the beach at 6 am. There’s something almost holy about a sunrise. It feels like a sneak-peek at reality unfolding–a backstage pass to the universe or something. Anyway, I’ll leave you with that photo, because I was feeling very alive when I took it, and my fingertips still buzz when I look it now. Maybe yours will too.

6 am, alive and well

6 am, alive and well

Health, Happiness, Buzzing

Jumping Off.

I’m never up at this hour. But at roughly 6:40 am as I drove across Lake Ponchartrain, one of only a few lonely cars on the 24 mile bridge, it struck me just how sacred the early mornings are. Of course over water, there are no distinct markers of distance traveled besides mile markers on land, but somehow over uninterrupted waves there were these distinct and momentary glimpses into the context of my life where all the working pieces fit together. The sense, however fleeting, had me second guessing my entire history as a bona-fide night person. Maybe there’s something to these early morning hours where people are drifting into the routine of their day or into the hangover of their night, and in the middle is me, not exactly doing either, but finding my place still–stumbling on a whole in lieu of constant and incompatible parts.

Yesterday I attended JazzFest and I remember walking around in no known direction, attempting to find a group of my friends, which is almost a miracle if achieved in such a clusterfuck of a public arena, and this thought kept trying to get a hold of me. “What am I doing? I have no business being here.” Over and over that thought, with every wrong turn and mistaken identity. What a sad thought! I couldn’t pinpoint the origin of it, but it probably had roots in my mostly confined and solitary past over a few years. And now sticking my head out, landing clumsily in the middle of the public world that not only didn’t stop while I was “out sick”, it also didn’t slow down at all either. And that continued, irreverent, incessant flow of time in one direction only all of the sudden felt very real and a little unnerving too. But I walked on. It’d be a lie to say I felt any confidence at all then, taking in every type of person of every age and origin.And even though none of them looked truly happy to me, none of them had a life that I felt cheated by not having, I was still odd man out.  I started to wonder if I had real friends at all that I’d find. Maybe I had imagined them up in a fantasy of my mind, and I’d walk tirelessly never bumping into them because there was no them to bump into. But I walked on. I pretended some of those thoughts didn’t exist. Maybe more, I just didn’t take them very seriously. I’d feel the sun burning my shoulders and I’d affirm that more likely than not I’d find my friends, I’d engage in young adult behavior, and feel a little better about my place in reality.

After 45 minutes of circles and flags and strangers, I watched a really drunk boy hoisted up by his friends, being dragged with his lifeless converse trailing under him leaving shallow lines in the dirt, the unfamiliar sights were piling up, and even I started to feel like a stranger there. But then– something familiar. Emily’s ponytail. Someone. People. Friends. They existed, and I was not yet proven insane. In that moment those thoughts I had didn’t carry any weight at all. Whether I found my friends or not had nothing to do with belonging in all honesty. Separateness is just a construct of ego and I know that, but it can stab you anyway. I knew that afternoon I could’ve really used some friends. And there they were and there I was. I belonged. I knew those thoughts were shit. Time to keep on living. Time to have fun now. Time to participate in the onward direction of time, and  attach to some other thought that experience will most likely prove wrong.

Maybe I should’ve mentioned it earlier, but I’ve never really been a live music person. Which makes me feel incredibly lame mostly. Just like I’m also not really into The Lord of the Rings. True “outsider” feelings emerge in me when this is brought up in public, and I feel like there’s some joke I’m just not getting. What is there to say about it? To each his own. Anyway, at every live music event I’ve attended, I find myself gazing off lost in observational mode of the people enjoying the music, instead of intrinsically enjoying the music myself. I can’t help it. There’s always some woman on the borderline of being “too old to be there” on some drug that’s a little too young for her to be doing, and I can’t help but watch her, dance carelessly, body parts hanging out, not giving a shit about what etiquette she’s breaking. Then I at once sympathize for her but also want to be her, because she is losing herself in something enjoyable, and she’s alone, and I’m the creeper at the concert not dancing but staring wide-eyed and blinking very slowly. I dated one of those music junkie type of guys for two years. He had an impressive collection of bands that you never heard of on his ipod and was always discovering music years before it became popular. (I on the other hand got my music from Apple Product commercials) He flew all over the country to catch his favorite bands at different venues. Sometimes with friends and sometimes alone and it was this small gap between us because this passion he fell off his seat for was somewhere that I just didn’t fit. And this schism in us always interested me, because at concerts we’d share a joint and then even more I’d separate from the setting and lose myself in the detach-and-detect humanity mode. He was good about keeping me down to earth and assuring me that dancing like an idiot was fine and encouraged, and that no, that guy next to me was not about to die from sensory overload regardless of what his face and body movements suggested. But there was always some wall with me at those shindigs. I could never really figure it out. Ultimately the relationship ended, and I wondered how much, if any, this disconnect had to do with it. Maybe nothing at all. Maybe a whole lot.

It’s funny how discovering clarity leaves with you so much to know still. My goal this year has been to find clarity of any kind, certainty of any measure. Because both of these things lack hugely in my personal life and it wares on me daily. It’d be nice to make a decision and know it to be right, or know anything at all for that matter and trust it to be true. But even with this goal in the forefront of my consciousness, it has still been incredibly hard, and so far, I’m yet to find either. I’m guessing the more things I pursue where the end is uncertain and there are no guarantees will help me to eventually get there, or in the general ball park. On the bridge this morning, the unceasing rhythm of a road bump every 1.5 seconds, I glimpsed certainty. I glimpsed knowing something at all, and it felt very good. But I don’t know if it’s possible to exist in this dimension full-time. At least half of life seems to rely on not knowing but jumping off anyway. Maybe love, happiness, success, peace..are all the outcomes of great risk and great faith. All anyone can do is make their best bet and go for it. Maybe once we let go of knowing anything for sure, the way I walked in endless circles yesterday, the way those waves went in no direction this morning, is how we find the happy end, whether we knew we would or could or not.

Health, Happiness, Walking On, Jumping Off.

Colby's Apartment

Colby’s Apartment