Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

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#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

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She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

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Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

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You Can’t Unring the Bell

Short Story:
Fiction/Non-Fiction/Alternative Rock

I can tell you that indoors the weather is just fine. Perfect even. Outside though, it’s a soppy, dingy dish rag that sporadically drips into a mop bucket full of beetle-colored water. The yard a soupy mess. Rain becomes so droopy without wind to accompany it, so forgetful without the boom of thunder to remind the constant tick tock of water to slow or quicken or mix things up. No punctuation. No gusts or light shows. Despite the vertical, straight march of precipitation, a stillness encapsulates my little world into one whole thimble, and I find it hard to believe it’s not raining in China. Or somewhere across the world that apparently exists.

The flat, cheerless sky has hardly faded from two or three shades of a trendy-kitchen grey since morning to now, night. Almost night. The humanity!  Do you know what unchanging, murky tones can do to a life like mine! But the sky isn’t listening. It doesn’t want to fight. Or talk right now. It’s too busy emptying a stream of many forms of consciousness, of prayer and disruption and quiet and mirrors, most of all, so we can see. So we can see each other, the sky finally relents. I wore her down. So we can see what we’re doing to one another, and this aquatic ritual to restore balance, maybe it might help us look. No dummy, not at yourself. (I had tried to find my reflection in a dim puddle, a reflective twin of its sky) At the others. At what your lack of looking has cost these “others.” I forget a mirror is a plane, a device, where I can see other things besides myself. Other, dare I say, dimensions?! I dare not say. Not because I don’t love a good dare, but because I didn’t look. I don’t look yet. I know that once I look, I won’t be able to un-see. Once I know, the bell will be rung. You can’t squeeze the toothpaste back in the tube. So I continue not to look and my ego agrees with this decision, but my innards do not. 

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Monty, the dog, he never even hesitated whether to look. He’s the reason I’m outside at all. He’d seen all along and it wouldn’t take a smoky sky and day of dirty dishwater drizzling filled with absolutely stupid feelings of nostalgia about an ex-boyfriend who no longer exists on this plane, for Monty to even consider the choice to see. He would never even have dithered or delayed. Think of people who are kind but who don’t have to try hard. They simply breathe and even their breath is kind. As opposed to those who put forth a lot of effort, noticeable effort, who are being good because they know it’s right to be good, but it doesn’t come easy to them. And they enjoy (prefer) a lot of accolade for it. I fear I can have this tendency too often. How else would I know this person exists, if he weren’t inside me somehow? Too different from Monty, from my dad, who never seemed to try so hard but had to saddle with the same choices we all do. They just didn’t grapple with what to do and they were happy when given the chance to do something kind and valuable. Me, I have to get all existential about doing the damn dishes. Eye roll. A person made of genuine good converses on the street, smiles when they see trash in the gutter, pick it up, and dispose of it while continuing their joke about where cows go on dates. To the moooooooovies. 

A person made of too much ego would first, never tell this joke. Secondly, they’re absolutely disgusted at the sight of this same trash. They pick it up with a crab face and a secret pride that they’ve braved touching and holding le garbage, even if they are carrying it eight inches away with an angry stiff arm like a strangers dirty underwear. Then they angrily stuff it in a can while interrupting their own story, but of course their own story is about why the youth are a disaster as well as weather, frogs and politics, don’t get him started, and throwing away this trash is just proof that a disaster is just what the world is. Unlike an earlier time when there was simple decency that just doesn’t exist anymore. I fear a lot about living like this latter person. I guess the most I can say is I’m trying, and my insides tell me Hey, that’s something. The result is the same, right? The trash finds its way to the proper receptacle, but one of those people is clearly sad about getting old. I want to get happier that older I become and the more I know, which is very little now. 

Watching Monty in those puddles makes me want to be good but keep quiet about it. Never have I seen even a moment of blurred consciousness in him. Or questionable kindness. Where is his ego? I wonder this as he splashes into a huge puddle and flecks of overjoyed water bullets burst out from under him and rise and fall, absorb into the earth. He saw every color reflected in that puddle, in every tiny droplet that exploded out from under the soft but protected pads of his feet, and still nothing but glee emits from his every move. How could he exist in such an effortless joy of Being? Did he forget to remember that we used to do this with someone else? Someone no longer around? How could he behold both truths and still be at such ease with the knowledge? That dog is roaring to go, bursting at the seams, to go anywhere—the mailbox—do anything, awake at all times, and yet he can count. He can remember. Still, every day is the best day of his life.

He knew about the way things once were. Who used to be here. How many days he has left, if you were to demand those kinds of numbers and answers from him. But once you knew, once you’d looked, as I was still certainly not doing, it would be absolutely silly, and stupid, not unlike the nostalgia over an ex-boyfriend, to calculate days left. To play the mental movie over and over of people gone and being wronged and things lost all along the way. The questions would hardly even compute, actually. Those kinds of calculations lose meaning in the way we interpret them—they lose their heaviness, their value, as does “losing” the people and things we love. Once you’ve looked, you would never use the word lost or lose. The whole metric changes. It would be like asking, “How much purple is in the sunset?” 

I close my eyes a moment and listen to the sky busied at her nearly impossible task, pouring love that has to consist of a main ingredient truth, and thus pain, because this is how we’ve decided to handle truth: insulting instead of informational. It pelts the glass at my window and the lights on inside seem to inhabit the living room as though someone were in there. But we’re outside, not looking, and the dog seeing it all. 

A sadness comes over me, knowing what the sky has to do. Wake all of us up, in a defiantly chosen, solid sleep with our fingers in our ears and our devices producing nature sounds. The pettiest of things distracting us even from idle, filler dinner conversation. If only zombies weren’t so trendy! Not looking. Not listening. Crossing the street anyway. And yet we curse her when we do harm to one another. Manipulate, kill, lie, take advantage. Deny a person their humanity. What do we do? Where do we look? Up. We look to the sky, angry, demanding answers to our violent curiosity: Why?How could you? This is why she offers the rain. And the rain offers a reflection. A way in. To see. Will any of us feel the fear stirring and jump anyway? Never go back to sleep again? Most of us only glimpse this possibility, and most of us won’t take the leap. It would mean never able to tell a lie again, not without knowing the untruth within us, and relying on ignorance is often very helpful. 

She has many tasks, and waking the unconscious from their dream, their million year-maze of thoughts, is no cakewalk, I can assume. She can only try to show us what’s already there, but ultimately the dreamer has to want to aim his sight higher, at least want to wade through the stickiness of his psyche and open even one eye and see, if not awaken altogether. So many are too afraid of what they’ll lose, and in this instant of stillness, space—the gap— I see that I am one of them. I harm myself, and others sometimes, then I ask the sky how it could be so cruel.

Some part of me that I don’t very much like, doesn’t want to know, no matter how much in a conscious manner I can claim to want all the answers with a ferocity I don’t come across much in myself. That part of me that’s always there, the gatekeeper that doesn’t know the difference between stories and reality, no doubt finds the option to see as an ultimately punitive experience. Think what is means, it whispers in my forehead, where a mental playground of emotions, mundane observations, good and bad assumptions, real and false interpretations of reality all flow in and out like a river, all water of the same source, indiscernible when it comes to water that matters and water that’s muddied and wrong. We can agree this makes him a pretty bad gatekeeper. It means that our choices may be all our own, and not the intricate plans of an angry sky. That there may mean no answer for pain and struggle, even if we might actually be able to harness value from it. A good reality wouldn’t require us suffering to see or act. The voice becomes entangled in a web of sounds and rushing water and it’s hard to make it out anymore. It’s just so easy to hear the rain as a lullaby instead of some alarm. 

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I open my eyes and temporarily, the heaviness lifts. The tasks disappear. My to-do list seems strangely laughable. It melts as if held over a flame, the edges darkening and curling. Monty is still jumping in puddles of rain and mud. In the puddles, the flecks of flying water in various shapes, I see myself from the outside. I see just how many choices were mine that I’d somehow attributed to unfairness or plain chance. In my night terrors I know when I am dreaming but I can’t wake up, and I wonder if ever I’ll be able to use the power that’s been given to get myself out. But I only get glimpses. Things around me dissolve like they’ve spontaneously turned to fine sand and dropped as a choreographed fall to a bottomless ground.  Then they return in nearly the same moment. Reality becomes a solid. Things are regaining their importance. My to-do list resumes it’s urgency, reassembles in perfect form. The phone beeps at me, prying, crying for attention to matters of total inconsequence. What will you do, Mary? Pretend you never signed up for this stumbling of life? Ignore that moment you knew and signed the contract anyway? I chose to come here, some time ago. What am I doing crying about the end, an end I seemed to comprehend with that flick of my pen, but now feels like a puzzle that can easily turn pain worthless, and that’s the problem with forgetting. So the sky, she tried. 

Sleep. Wake up. Jump. See. The space, the still, calm waters in the back of my head, the reflection to the foreground of my consciousness, whispers that the leaves of the tallest tree rustling at me every night are in fact my dad saying hello, and it’s OK to sound crazy when you write that out loud. And the crumbled dead leaves shaped like hearts on the dirty ground, that when I came across as a kid made me smile and cry because I knew they were him reaching back at me. Little tiny reminders, all of them. They go far far back to a dream I cannot remember, nor do I have the words to get right.  The conscious waters splash and say it’s OK to take my time.  “But we could really use you. No pressure.” That place is the gap—the space between thoughts—just like Tolle taught. But the gap is low in numbers. Too many sleepers.  

The sky grumbles with thunder, like a disgruntled old man picking up a mess that isn’t his. The wind picks up. The drizzle elevates into a downpour and I sense the greatness of the sky, separate from my body and yet capable of removing its weight, able to reckon the things we always thought of as separate. Monty jumps in another puddle but I call him in, weary and limp-limbed, head pounding, words swirling in my forehead I still can’t make out. He trots, tail wagging, nearly a prance. He is so happy to be here; alive and at peace. The fact that he has never caused harm, that he wouldn’t know how to makes me feel like crying, which I feel pretty stupid about and so I cry some more. These thoughts do no good and worst of all lack total creativity. The gatekeeper fails. When will I believe the obvious whispers? The glimpses I catch. Something illuminates then leaves with barely any time to remember, and my memory of it is so far from the form it took while it was here. Like a dream there is no language for. But the clarity while you had it, stiff as the second you drive under a bridge in the rain and the quiet gets in. Then I lose the grip. 

I have not been there but peeked in on that place of truth just on the other side of this one. Wakefulness animates everything residing there. People tell jokes and look each other in the eye. All their brothers keeper. No devices in the way of our eyes. Egos can try, but when they get even close to too large they pop like a balloon. At the bottom level it sounds like popcorn at one minute 20 seconds. I cannot wait for the grand relief of being there again. Of having the courage to see and stay there. Falling asleep here and choosing the illuminated reality there, where nothing hides, nothing lies. The folly of all our burdens gone. The great weight lifted. 

*This “short story” or whatever it is probably belongs in the poetry section of this blog even though it’s far from poetry either, but I couldn’t figure out how to post there, so here it is. It’d been blinking at me on my screen for too long, so it was time to set it free like a dead persons ashes in the ocean. Sorry, morbid. Health and happiness :)

 

Looking Up

If you’ve ever looked at that iconic photograph of earth sent back from space by the Apollo 17 crew in 1972, chances are you may have felt very small. The things you do can seem insultingly unimportant, useless, or a total waste of energy—the effort, our pain, the whole point becoming lost in the incomprehensible hugeness of it all. In one snapshot is a glimpse of our existence within the context of an entire planet: billions of people.

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There we are, floating, in orbit, rotating at some figure I could never pretend to compute or understand. A sphere of blue and green, dusted with blurs of white clouds we learned the names of in fourth grade. Cumulonimbus. Stratus. But it expands even further. A planet, within a galaxy, within a solar system, within a boundless universe for which we can only account for a relatively small portion. Why am I worried about the U2 album that came pre-programmed on my iPhone? I didn’t ask for that album Bono, I didn’t ask! But you look at our planet like that, and sometimes it helps spot spilled milk when we’re unable to discern it ourselves.

Snapshots just like this are every where in all types of forms– landscapes like the ocean, trees hundreds of years old, music that hits us somewhere deep or a night sky full of stars. They stir inside us some sacred moment demanding our attention. Attention beyond the five senses. These are the stirrings of Consciousness, I think. Or becoming aware of it. That divine desert in our depths, dormant and shy, but reliable like a sleeping dog, waiting on us to wake up and snap our fingers, let him lead the way. Always that calm sits in the background of our thoughts—that sturdy part that never leaves. The gap between breaths, but we forget. Last week I sensed it watching the wind rustle the leaves of the bamboo in our yard for I don’t know how long. I don’t get out a lot.
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I know this is Consciousness I’m confronting, because a stillness envelops me, time melts like a clock in a Dahli painting, and the typical limits and boundaries fade. A noise that usually dominates the atmosphere diminishes to silence. I haven’t arrived or gotten anything, I’ve simply met the present moment and there the forms, my thoughts and the sounds seem to run out of ink. A space is required for Consciousness to awaken, but it’s usually drowned out by the incessant noise of our lives. Opinions and drama and auto-pilot tasks and Snapchat. Trump. Chatter. Twitter! 

We are bombarded by distraction, no doubt, and there will never be a shortage to keep us looking the other way. Because consciousness doesn’t operate according to the limits of space or time, we are glimpsing eternity in that instance. A non-quantity! It’s no wonder we can’t hold the reality of this perspective in the forefront of our minds for very long. It almost operates on a separate plain. Size without a producable sum total– time beyond a unit of measurement: this is not how we learned to understand the world. It’s like trying to remember what words looked like before we learned to read. Then going out in the world and being told not to interpret the thousands of messages we’re assaulted by. Even Monty knows this is basically impossible. It will take some time to unlearn the default.

So we can only live in that space for so long before it vanishes out from under us, like a dream that dissipates as we slowly awake. The sky then fades back to a ceiling, a black ceiling with white dots. The ocean returns to an aquatic location where we swim and fish and take family pictures at sunset. And why not? Sunset by the ocean is the perfect backdrop for photos.

d62e90913370966f6d5efa7a2e878b0b.jpgThis Consciousness is hard to reconcile with the world we live in though, because it veritably negates the way we’ve been taught to perceive the world for centuries. At the same time it also perfectly encapsulates  Tolle’s explanation of our life here, which he emphasizes is not according to time, but to being awake in the now–the closest thing to time that actually exists. The Eternal Moment, he calls it, which works out in every scenario where you try and deconstruct it. I’ve tried. Still, when you’re down here in the dirt, when you’re in pain, it seems far too simple a way for things to operate.

So when the window opens, we can expect it to be small, but we should hold on as long as we can. I know that’s where a much more permanent and truthful dimension in us lies, it just hardly gets time out of the box. So I try not to be afraid of the quiet, of being alone, of having nothing “to do”. In these uncommon, custom moments, forces larger than us might be at work, awakening something that the whole world, not just us, is in great need of.

Most nights, I walk home from my parents house with Monty. They lock the door behind me and sometimes my mom yells Watch for snakes! Marc flips the switch and the Christmas lights in our trees illuminate a path to my house, a whole 15 steps away. Monty bolts off feigning a hunt of a squirrel or raccoon or some other Southern vermin. Midway between our houses is a small wooden path over the ditch that connects their yard to my driveway. Every time I reach that bridge, I stop, almost reflexively. I look up. Every time.

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Sometimes I’m holding a laundry basket full of clean laundry with my head pointed upward at the sky and mouth agape like an idiot. I often don’t even remember making the decision to stop or look up, I just find myself with my head directed that way. For whatever reason I think, I’ll remember this when I’m older. I see these constellations of stars and whatever shape the moon takes and if I’m lucky, rarely, a shooting star. I remember then too: the sky is not a ceiling. The sky is not a ceiling. Then I try to reconcile that truth without my mind exploding, and consider that what I’m looking at goes on. Then I try to humbly just appreciate the beauty of this magnanimous thing and think  think how I have absolutely no idea what the hell I’m looking at.

I just know I’m mesmerized by what I see and some part of me is drawn to look there, every night. I wonder a hundred things. A part of me thinks maybe it’s the soul making a nod toward its source. The same way we’re drawn to look out at the ocean or up at trees the height of sky scrapers.  Maybe it’s just a bunch of burning gas with no intrinsic meaning and this is a crap romanticists idea of the cosmos. But that notion feels too simple when held up to the backdrop of the universe’s complexity.  Just like staring out at the ocean. These stars, this water: all here before us. All to go on after we’re gone.

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I think when we capture these hiccups in time, it’s not meant meant to make us feel small or meaningless; That none of this matters.  But I do think it helps us remember that our time here is temporary. We don’t exist on earth forever, which the human being practically takes as an insult. How dare there comes a point when I die! So we don’t talk about it, fine. We don’t have to talk about it. But we have to deflect the thought that just because we live in a boundless world with a kazillion people that we’re somehow replaceable and we don’t play a very needed and unique part in the production. It takes a trust that’s very hard to reach for, let alone find. I don’t know what the answer is, but I can assume one is that we’re not meant to torture ourselves over not knowing it. Maybe living with the mystery while trusting our path is answer enough, for now.

I’ve been writing about this for a while because one, my brain has run the speed of sap. And two, I’ve been sick every day this week and stuck in a half conscious state in bed. The last 4 months haven’t been much better besides an occasional ‘OK’ day. I realize compared to some of my sick counterparts, thats nothing. But still, it’s hard. It’s like you’re tethered to the world, and you slowly start to drift outward, losing your connection to people, your passions, a reason that makes sense. The further away you float, the more convinced you become that cutting the chord would be no big deal. That couldn’t be further from the truth, and I don’t say that flippantly. I say it as a testament to the power of the mind and our thoughts. They can actually make us believe we don’t matter, which is a dangerously powerful indictment that can be incredibly hard to fight off. I’ve been there, and I’ve had people help dig me out of the hole. I’ve been lucky, and I know that.

During trying times like this when my body feels like it fails me repeatedly, I’ve lost my belief that there is worth in a life spent sick this way. But that stillness, that other plain that awakens under night skies or oceans that you can’t see the edge of, it is so much more powerful if we only give it space to grow. Even just recalling that I’ve felt it before can help me remember that these periods in the dark will be “burned up by the light of consciousness” (Tolle), as they have before. I am still learning. Part of that lesson is to accept the mystery of pain, to even yell at the sky about it if that’s what has to happen, but to keep going, nonetheless. Even if you don’t trust where you are, keep going. At least allow yourself the relief of eventually finding a place you do trust. Like Churchill said, If you’re going through hell, keep going.tumblr_n18wf3teth1r7wnmko1_r2_1280

Life is working in pieces, one day at a time, like always. It doesn’t have to make sense in order for us to be happy. I wish it would– I feel violently curious for answers sometimes, knowing good and well that no answer will bring back the things I’ve lost.  But here we are, who we are, with the hand we’ve been dealt. It matters now how we play our hand in the game. With carefulness, attention, and reverence that you’ve got a hand at the table at all. Be still, make space. And look up once in a while.

I’m talking to myself again. It doesn’t matter. I still I believe there are answers everywhere. We don’t have to know them to awaken the space where they might be easier to find.

Health, Happiness, Looking Up

 

Airports.

I am somewhere between supine and upright on my couch where I have taken residence the entire week. My postcards read Greetings From the Couch! Most the movement taking place is in a continual rearrangement of pillows, positions and blankets in a futile effort to achieve positional comfort one way or another. No success yet. There must be an ergonomic texting/reading chair somewhere out there.

Outside it thunders, as it has every afternoon this week. It’s hinting at another storm, but has yet to produce rain. Monty is in mental disarray, gyrating off and on in these vibrational fits, all due to thunder. I’m still surprised he exhibits such outward fear this way, mostly due to the frequency of thunder in Louisiana–like fearing snow in Colorado. It’s instinct, apparently, that guides him to squeeze his awkward, girthy body into the narrowest nooks of his own making around the house, which right now is between the sofa and coffee table beneath my outstretched legs. When I go to the bathroom, he follows close behind and then wedges himself between the toilet and the wall. Another round of gyrating. Every time it cracks suddenly or it grumbles in that deep rocky tenor, he stares up at me suspiciously with visceral worry in the whites of his eyes. It’s like he’s saying “See, I told you” as though the sound of thunder was proof that it were dangerous. Maybe it is and we’re in harm ways;  I’m just too dense to know it.

My petting and reassuring him with extremely human explanations, my instinct, apparently, does nothing to quell his fear. A boyfriend once told me, as is distinctly male instinct, that it’s my own cushioning and coddling him in my high-pitched, soothing voice that makes him nervous because it communicates that there’s something to be nervous about. If you only acted normal, so would he. But I am beyond certain now that this is an incorrect hypothesis, not just because of the many instances of thunder and attached panic I’ve witnessed, but because once, a year or so ago, I came home from the grocery store in the middle of an aggressively loud storm. Unable to find Monty, I finally discovered him not only in the bathroom, but in the bathtub, quivering. This is still both one of the saddest and funniest discoveries I think I’ve ever made. Being righteous as I am I noted right away that this fear of his is no the result of my coddling, but from some primive instinct to get the hell under something, squeeze into a tiny space and quiver till it’s over. Interestingly enough, they say the bathtub is the safest spot to seek during a tornado etc. That’s what my mom says anyway, to which her husband cackles As if there’s a safe place to go during a tornado. 

I’m supposed to be on a 4:00 plane to Miami tomorrow. I’m visiting my Brother & Company for a week and then attending my best friends Miami Bachelorette Party at the week’s end through labor day, braving ourselves amid the Zika hysteria. I’m in no shape physically to travel right now, but I’m hoping and praying for some kind of divine help. For more than a week, I’ve been, what’s the phrase…Out of Service. Technical difficulties. Shit For Brains. The usual Crash buffet. I’ve rested pretty continuously, changing couch to chair one day, trying a different room the next, mixing it up as much as is possible right now. Among the physical shiftiness  I find myself really grateful that I have the time and space to actually rest. I always recall my last few months of working full-time, when I felt this way daily. The added angst of knowing that on top of being that sick I had to show up somewhere and be a functioning human being was enough for a nervous breakdown. Those were incredibly tough days, but I’m glad I had them. It swells my gratitude now that I don’t have to push through the pain, fake a smile, tell people I’m fine when I’m half certain I’m about to croak. It’s a gift that I don’t have to live like that now, and I try to stay aware of it. I know that traveling to Miami and sleeping somewhere that isn’t home is going to take a lot out of me, annoyingly, because I always prided myself on being a low-maintenance traveler. I’m still able to sleep almost anywhere and don’t require a lot of amenities, except water for pills and sometimes an emergency room. But I don’t think I qualify as low-mainenance anymore. And there’s a price to pay in leaving home now, and that’s just part of the deal. “Vacations” are not relaxing things really. They are usually a lot of fun, but they are always costly. It’s one of many things that, due to physical restraint, has become depressingly large– mundane things are no longer right-sized.  Laundry. Packing. Putting bags into smaller bags. Remembering. Prescription refills. Pharmacy lines. Doctor authorizations. Insurance Authorization. Pharmacy on-hold music. Monty’s sad face when I get out the suitcase. Lifting and carrying and dragging a portable box of crap on wheels around.The normal stuff everyone endures. When you think of all the steps you’ve gone through by the time you’re sitting on an airplane seat, it’s a lot! It’s the same except for the burden it will bear later. An ongoing debt you have to pay, for a bunch of crap you don’t even want! Hah. Am I done complaining yet? Maybe.

I’m thinking of one of the largest culprits of exertional consumption: Airports. Like Vegas, it’s a surprising amount of walking. Standing. Waiting. Discerning boarding announcments. Taking off and putting on shoes and jackets and giving the laptop its own bin and PLEASE MOVE OUT OF THE WAY MA’AM. It’s the meanest display of manners one will ever encounter. A harsh environment in many respects, the airport is like entering this fluorescently lit void where nothing is permanent and you’ll live a little while–but only as a stop on your way somewhere else. Not so different from the no-name town interstate exit you take on a road-trip at 3 am, strictly to use the bathroom and gas the car. It’s a blurred cross-section of time zones cultures and classes that feels like one wavelength just outside reality. The normal rules don’t apply. What time is it? It could be so many different o’clocks at once!

It’s a funny place. It does things to perspective, to experience, even physiologically. You walk but somehow it feels like you’re running. Down a transient track you go, walkrunning to your gate, (your  3 am exit) as bits of conversation and commerce and commotion fly past you in quick succession, one second glances in the eyes of strangers, some of them feeling oddly familiar. Snapshots of children having tantrums among bulky luggage in a news store inline. So many incremental, rapid snapshots of all the others in the world. You forget they’re out there. They flash by at such a rapid pace, and just as quickly they’re gone. I always feel incredibly slow, unable to keep up with a pace that is either insanely hurried or intolerably slow. I feel standstill among it, even when I’m walk-running. There’s a certain nervousness I detect; most people aren’t really reading their books. I know because I’m creepy and I watch while they wait. They’re always looking up and around, just making a general visual sweep, assuring their psyches that no one in the vicinity has lost their mind yet or look like they’re going to. The people watching went down a few notches with the introduction of cell phones. Now people are actually entrenched in what they’re doing–looking at Facebook or Twitter or any of it on their phones, and probably someone could lose their shit really loudly and they’d hardly notice at all. Anyway, inevitably, there’s the well dressed business man running full speed with his expensive roller suitcase in toe and his jacket flapping behind him. Excuse me!! He yells with importance and people seem to respond. Yes move please thank you! Some people give him a dirty look, but they’ve forgotten solidarity! We have all been that man running like an idiot to our gate. I must say the image always makes me smile. It’s the quintessential reminder that yes, you’ve arrived to the airport. Buy something trashy and take a seat. Read, don’t read, you’ll enjoy yourself regardless because there’s something pervertedly entertaining about watching people dressed nicely and running at high speeds. I know I know, solidarity. But it’s just too easy. Thousands of people you’ll never see again.

airport-ronald-haber
Hi your flight has been delayed six days
A mighty few are novelty travelers, for whom the airport is filled with opportunity and new adventure, and the unique sights and sounds are an exciting reminder of going somewhere new! But sadly many more represent the disgruntled traveler, the jaded one, the one with 3 million frequent flyer miles that he’ll never use–for a vacation anyway. Like the teacher who has been teaching far too long, he’s too familiar with the height of inefficiency he’s about to face, the hoards of human stupidity he’ll have to wait on and wade through just so he can board a vessel where all the pieces and parts of utility and supposed comfort are screaming “I’M TOO SMALL!” Inevitably he’ll be seated by a yelling toddler being spoken to as though he were 40, all so he can experience the miracle of flying at 40,000 feet, a height repeated by the captain 2 too many times along with others “uhhhs” and stutters and unnecessary bits of information. Then the final descent, a wobbly landing to applauding passengers for God knows why, in Cincinnati freaking Ohio.

Personally, I love flying.

The sky has finally opened its mouth to a downpour. Monty has calmed, but he sees the open suitcase in the corner and we’re both a little weary.

Health, Happiness, Seats Forward and Tray Tables up

 

Authors note: This was written ten days ago. Not that you care. 

This Is Still a Life

Oh hi world, I didn’t see you there. I haven’t seen you in weeks in fact! I’ve been in involuntary hibernation since Thanksgiving. Pardon me, I was knocked out.

This crash has been intense and I’ve been writing my way through like always, trying to understand it better. But this time I tried much harder to accept and approach it without the need to fix or change it. Without “fighting back.” I want to be clear that I’m not writing to answer the question of Why me? I’m not in that stage anymore. So I’ve tried to create a surrendered space to talk about it, where it’s regarded as part of the plan, where there’s no sense of unfairness or despair about it. It’s simply a fleeting, physical state that I’m meant to endure and examine closely among probably many other physical states I might encounter in my lifetime. I’ve tried to adjust my whole response to it, which has been more of a lack of response, or reaction, and more objective observation. Life between stimulus and response. Being sick and being OK with it, not attaching the personal, the story, the woe-is-me. I applied this approach to both my writing and my perception of the illness in real time, which has been interesting and challenging and often extremely helpful.

But I’ve sort of been a tortured artist with the writing–I keep editing and condensing and re-writing. I feel the angst that it’s never quite right, that there’s a concept just on the edge of being conveyed, like a mathematical equation I’m on the verge of solving. So I’ve once again ended up with 7000 words scattered across 3 notebooks, my iPhone, my computer, and one business card. Most of it has been exploring the same topic at different depths, and while some of it is good, I realized it’s just not meant for this space right now. Not to mention, my brain feels inside out lately–I’m a little fuzzy cognitively and I can’t gauge it. I’m either buzzing or stunted. But I’ve continued trying to make my words achieve what I feel inside and what I want to convey, staying very conscious about my intentions,  which are that I don’t just want to write about being sick and my experiences simply because they’re true and they happened. I don’t want to start and stop at pain. I’m well aware of the danger in that. So I’ve been tinkering with these concepts, some of them seemingly contradictory: diving in deep into the experience where I can feel it completely, while also regarding it from a distance where I can see it inside of a larger context–which keeps the illness right-sized. I can recognize it as a part, and not a whole. I’ve gotten pretty close to finishing it, I think. But it’s been arduous and probably redundant and my mind is still spinning, even as I write this now.

Anyway,  I’m going to start from scratch today and try to relax about the outcome. A good friend said not to worry about lengthiness, just to keep writing and trust that if people don’t want to read it, they won’t. That’s so true, duh. Thank you friend, I’m just going to write some broad things out, and whether good or bad, hopefully open up some space in mind for some fun topics, like my exploration of Hallmark and Lifetime Made-For-TV Holiday movies, and also a note about my 12-foot real Christmas tree that refuses to drink water. But it lives on!! Tiny miracles.

My health was already on pretty shaky ground leading up to the Holiday. Thanksgiving  Day was great, ate good food and had some fun reunions with old friends, but it was long and cumbersome. I could feel myself subtly hitting physical limits along the way, but I pushed on anyway. (I include the socializing that happens as part of the exertional strain, even though it’s enjoyable, it always costs me something physically the next day.) It was a Holiday after all, and I could sleep it off tomorrow, I thought. Unfortunately, I was flattened–handed over fully to the illness overnight while I slept. I woke up to the dreary and unfamiliar light of 3:30 pm pouring into my room on Friday. It disoriented me further as I felt an overwhelming weakness blanketing every part of my body, down to my fingertips. I laid there an hour before making a move, and once I did I felt keenly the severity of my condition. Moving was not easy and wouldn’t be for a while. I knew this wouldn’t be something that I could sleep off in a day or two. Shit.

Since then, I’ve been on a roller coaster of physical states, mostly at the mercy of this crash, and life here at the farm has been chaos. For a few weeks I’ve been enduring a symptom I find the hardest to cope with–bone crushing weakness. Spiritually, emotionally, physically, this one challenges me way more than the others. It leaves me the most powerless. There’s nothing to do for this symptom. When it has you, it has you. Its’ demands come in this perverted form of requiring that you do nothing–which is basically the reverse of our instinct in response to a ‘problem.’ It requires that you lay still, it means you’ll need a lot of extra help for things you’d normally do yourself and never think twice about. It means playing the waiting game and not knowing how long you’ll play it, without allowing impatience or succumbing to anger or despair while living through the thick of it. (Those reactions only makes me weaker.) There aren’t pills for weakness like this, not exercise regimens or quick fix solutions. There’s a lot of being stationary, quiet, often remaining in one place or one room for a solid chunk of time. Sometimes it’s a messy room, and you have to let that go. You have to let the dishes go. Truthfully, the whole thing is a crap ton of letting go. You have to achieve cleanliness mentally, because there ain’t no way you can vacuum right now. It means putting off the long list of things you’d thought you’d do, and finding ways to achieve a surrendered state of mind despite the external world around you appearing to unravel at nearly every seam. It touches everything, seeps into every corner, means nearly anything that isn’t necessary in the moment must be put on hold or go in the ‘burn pile’. You have to find a way to remember that despite all the can’ts and don’ts and no’s, somehow you still have everything you need in the moment you think to ask.

The only times I get overwhelmed is when I try to conceive everything at once, or I think of the future, as proximal as the one five minutes away. And the root of this is fear mostly, fear of ways the illness will hinder the things I have to do. Yet the future always comes and I always survive it, the essential is always achieved one way or the other. The non-essentials fade and soon you hardly notice they’re gone. When I stay extremely mindful of right now, tending to exactly and only the task right in front of me, I truly feel fine. I feel positive and at ease instead of buried, powerless. I think, all I have to do is drink this glass of water. I don’t even have to consider what will come after. It will come and go despite my concern. That’s where my navigation of this crash has felt like a small miracle. Maybe for the first time, my spirit has succeeded and carried me through the really difficult times. I’ve often been able to observe what’s happening to me at a distance, without becoming crushed by what I see. Or angry at how I feel. I feel really crappy, really weak, and so I find a good reason to be really weak today. They exist! They just require an adjusted perspective. In this way I’ve had the crash more than it has had me, and that has made a huge difference.

To whom or what do I owe this miraculous capability? Well for one thing, my mom. I should mention it’s not just my spirit that’s carried me, because it’s my mom who has physically carried me. She has tended to my needs when I’ve been incapable. Not to mention that she has a prayer chain halfway around the world dedicated my wellbeing. Just knowing so many people have dedicated even a moment toward healing intentions and thoughts for me is both humbling and energizing. It makes me feel hopeful, and that hope gives way to optimism, grace, surrender..they’re all there, and this situation constantly brings to light the choice I have in how I’m going to receive my circumstances. Whether or not I will accept and recognize all the treasures that lie beneath the hard stuff on the surface.

I believe there are always incredible gifts waiting at the heart of our struggles–and this time I was able to find them at clutch times. They don’t come from me, but somewhere else more eternal. I suppose the gifts materialize when we open ourselves enough to receive them– to the vulnerability that comes with accepting help in the first place. Our silly human egos could easily interpret the reality as I’m not enough. I should be able to do this alone. Blah blah blah. But to simply acknowledge the truth that yeah, I could really use some help right now if I’m able to emerge through this in one piece, the disappointment of need or felt inadequacy melts and grows into a ginormous humbling gratitude in acknowledging that I have help at all. What a reassuring reminder to know that I don’t have to do this alone. So why would I? I have help! It’s sortof like staying in a miserable marriage for 20 years all so you can say with pride that you’ve been married for 20 years. It may momentarily impress people, but you’re the one who has to share a life and go to bed every night with a person you may not even love or like! Sometimes we go after things because we like the sound of them, or the image they create. But the real meat of life is on the inside, in the everydayness of how we live. Not a 20 year anniversary, but how you love and treat someone through the mundane parts of life together. Talking about dentist appointments or discussing an article in the newspaper–how did you speak to one another? Not that you beat or survived illness, but how you treated it day to day and through the challenging times, how you treated those around you, and what you made out of your experience. Make it count? Or just get through it so it you could quickly forget and attach to something else. I don’t know. I’m rambling again.

The realization of some of these things  makes me smile and cry at the same time. I am so encouraged and fulfilled by all the love and help I’ve received, and it’s come in so many different forms, all of them special. I’ve had incredibly healing and inspiring conversations with people I’m very close to, and each one of those talks builds me up higher than before. What a hushed relief surrender is–and a gateway emotion at that. It opens the door to a surge of mindfulness that illuminates grace, friendship, love, thankfulness, all the good in my life that I’m blinded to when I’m distracted fighting something I most likely can’t control.

It’s difficult to articulate, but sometimes I zoom out from my life, like a camera zooming out into space with earth at the center, becoming smaller and smaller. When I do, lately I see a small figurine of myself living inside the palm of two big porcelain hands cupped together, like that of a statue. I see that I’m being held, and in the image, I feel watched over and protected, both from a far off place and a space deep inside. What an amazing treasure it is, to reach out your hands in a time of real need, and to have someone/something grasp them on the other end. For the most part, it’s my moms hands which have reached back. It’s she who provides. Her help, love, and attentiveness is immeasurable. As equally as my spirit, she has done the labor of care that being sick this way requires. And it’s not an easy job, though she’d never let you know that.

No doubt this has been painful and overwhelming for her. She has said that seeing her child in pain is far worse than having it herself. I’m very aware of this, and it’s even more reason that I feel the need to voice out loud what has been burning true through all of this– That it’s all OK. I am OK. I’ve felt strangely at peace through the tough stuff, and I know it’s on account of her and other loved ones in my life who’ve given so much of themselves just to try and lighten the burden. I am continuously strengthened by these acts. I want to assure her, because I feel it in my weak little bones, that this is all leading up to somewhere great. I’m certain that I am just where I am supposed to be. I don’t feel like any of this is random or cruel, but that it’s the work I am meant to do right now, and I accept it with fullness and eagerness. I know there is greater reason and payoff that we can’t see yet. But knowing it’s there waiting helps to greet all these “stresses” with an assured openness. Getting there requires work, but it’s work that I’m capable of; important work that doesn’t require a physically fit body in order to happen. It will be beyond worthwhile, if we can only get through this moment. Then the next one and the next one.

And the good news is we can! I can, I have. And I will continue to. Her enormous and powerful love has helped put my inner self on a plain where I am capable of moving forward and growing from this. For that I owe her…well, everything. But I know the only payment she would want is the certainty that I’m not only OK, but that I’m happy and that I haven’t forgotten the novelty of what it is to be alive. And if you’re reading mom, I haven’t. I experienced  incredible moments, inspirtations, and laughter, often alone with Monty in my messy living room! This is it right now, and I’ve found immense joy in it anyway. Like you said, This is a life, too.

I know this doesn’t solve the many problems we have right now. There are so many other things that haven’t gotten the attention they need, important tasks that had to go un-done, financial burdens that we have to figure out. And most of this is on account of this all-encompassing illness that touches everyone around me, especially her. But I do feel that soon things will change for the better, that we’ll get help where we need it, we’ll complete everything that’s gone undone. I know one day we will smile with relief at the memory of trying, chaotic times like these, where everything was falling apart. And yet I know these are what will become the foundation for some amazing things to come. When they do, incredible things are going to start happening. I can feel it!

For now though, a breath. A glass of water. Rest. Feed the dog. Rest. Send a text. Pills. A breath. Rest. Small tiny moments. One foot in front of the other. I feel really weak today and I can’t do a lot physically, so I’m going to find a good reason to be weak today. Writing, reading, listening compassionately to someone. Photographing my dog because I love him so much I smile just watching him sleep. So many amazing things require so little of us physically. Navigating each moment with quiet consciousness, I know not that everything will be OK, but that it is OK now. And I revel at the momentary freedom in that. I’m grateful just to glimpse such a powerful truth. Today is heavy and rainy outside, there are dishes in my sink and I’m too weak to do them. But I’m listening to Christmas music, I’m admiring my ridiculously huge Christmas tree and the soft nostalgic light it casts on my living room. And I’m reassuring Monty who is staying unnaturally close to me (following me into the bathroom and squeezing between the toilet and the wall) because it’s thundering outside and for him this equals imminent threat of death. This is my life today, and many days, and I’m living anyway! I’m enjoying it. I like the rain. I like quiet days. I also like singing obnoxiously loud to Mariah Carry Christmas songs. Monty and I, we’re fine over here. A sick life, but still a life. Regardless of physical outcomes, All will be well. But even better, all is well now.

Thank you, all of you, who have kept my spirit so alive! What all of you have contributed in your own small ways matter immensely to me. I feel extremely connected to the world and am humbled by the love I’ve received. I’m excited for the ways I plan to pay it forward. 

Health, Happiness, and This Life, Too.

 

An Open Letter to Myself, To Be Read 10 Years From Now

Dear future self,

Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.

For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.

Greetings From 2015
Greetings From 2015

But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK.  I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.

Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue. That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.

It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment options as an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.

Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.

And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.

But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.

Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.

Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.

There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.

This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.

See you in ten years,

Mary
And Monty

Haikus From A Crash

Spent Saturday night
Forgetting. Acting my age.
I’m young, I can dance.

For four nights, five days,
Never left my best friends bed.
(Hospitality.)

This tin-can music
On hold with the pharmacist
Tries to get me down.

Robot voice thanks me,
Your call is importan–Click.
Avoid urge to die.

Doc: Where is the pain?
Head, Muscles, Joints, Skin. Constant.
Doc: Are you depressed?

Congratulations!
Didn’t go to med school but,
I’m my own doctor.

The universe yawns-
Striving for life I don’t have,
I’ve become Facebook.

I cried when the maid
Killed the spider in my room.
Alone, things get weird.

Can’t forget him now–
Broke up just in time to find
Ringworm on my thigh.

A measure of will:
No one needs you anymore
Do you feel alive?

Monty at my side
Asks for nothing the whole day
Meet visceral love.

Tail wags in his sleep,
Watch his belly rise and fall
Love, you make me weep.

If Haiku rules were
Seven-Five-Seven instead,
Would I still be sick?

Bzzz. Thud. Bzzz thud bzzzz
Angry bee against the door
None of us get out.

Sad signing the forms
Which say I’m incapable.
BUT IM SEXY YALL!!!

Day 6, I’m alive.
Under water asking if
Dancing was worth it.

I should know better,
But I remember dancing,
Don’t remember price.

Health, Happiness, and Haikus.

Under the Water.
Under the Water.

*Shout out to Newman for haiku inspirations and continued decency in a perverted world.* 

The Cusp

You know in those movies where the main character is down and out after shit hits the fan and they’re nearing rock bottom but then comes this pivotal moment, a complete momentum change where usually an offbeat sidekick character busts out the tough love and tells them only they can change the course of their lives and no one else can do it for them? Suddenly this head-boppy motivational song chimes in and so begins the montage where down-and-out becomes up and coming and bad choices are replaced with healthy ones followed by inspiring shots of her showing kindness to strangers and looking bright and happy and you know, you know, that everything is going to work out for her. Her life trajectory rockets into the stars where her potential is limitless.  And all the shit that hit the fan has settled and disappeared. It’s all going to be OK. It’s going to be good.

I find myself on the cusp of my own Hollywood game-change montage. In the movie of Mary, it’d start with me rolling out of bed… onto the floor.Then Monty enters, pulling me by my shirt collar into the kitchen, and scoots me a plate of pills with his nose across the floor. Then begins my momentum shift song, potentially this one by The Killers

…followed by shots of me lifting three-pound weights and flexing my “muscles” in the mirror. I’m drinking green frothy stuff and throwing away prescription bottle after bottle, high-fiving doctors and crossing off lifelong goals. Suddenly I’m the one waking Monty up to play, and I’m helping sick people and giving speeches in front of the president demanding  healthcare change for the chronically ill. Then the camera slowly fades in to me typing at the computer in the hazy blue of night; a question appears across the screen: Are you sure you want to change this URL? It asks. I click YES, only to reveal my new web address word by word: Zero.Pills.A.Day.Com BABY! (Scene) For some reason this hasn’t happened yet. So weird.

OK so yes this is more Hollywood than reality and there are a lot of flaws to the fantasy, like me “exercising” for one. And vitamins curing me, for two. But the other half contains actual hopes I have for my life. There are real changes that I can feel waking from dormancy, and ambitions I know I can achieve, all that’s required is that I jump off. Dig in. But when it comes time to leap, I feel hijacked by my own dumb brain. Maybe it’s more of a lump; a dense rock in my depths that thinks of a million other things to do besides the one thing that matters. Sometimes it’s a total jerk of a rock and suggests I’m incapable or unworthy, or that someone else could do it better. And the worst part is, I listen! I think yeah, I should definitely attack my nails and cuticles until they bleed instead of trying to change my life and others for the better and for forever. Smart, real smart.

When it comes to writing, I encounter the same consensus among writers, which is painfully simple: That writing every day is obnoxiously hard and often achingly lonely, but you just make yourself do it.   The writer Anne Patchett writes in The Getaway Car that the key to completing artistic endeavors is forgiveness. Before she begins, “I grieve for my own lack of talent and intelligence. …Forgiveness is key. I can’t write the book I want to write, but I can and will write the book I am capable of writing. Again and again I will forgive myself.” I’m working to keep this in mind, since so many words and pages I write on this computer end up in the trash bin. It’s hard to know whether I have a discerning eye for quality work, or if I just don’t trust myself enough. It’s beginning to feel like the constant editing is just another guise I’ve unconsciously created to keep me from the jump. Amy Poehler advised in her recent memoir that in order to write you have to symbolically remove your brain and put it in a drawer, then listen to it throw a tantrum until it wears itself out–meanwhile you get going on the real stuff. “The doing is the thing. Talking and worrying and thinking is not the thing. Writing the book is about writing the book.” See? Basically to achieve what you want, you just have to do it. Brilliant. When I’m not in denial and I’ve let go of excuses, I am well aware that the only thing in my way, holding me back, is me; and knowing that almost paralyzes me even more. But I also know that change starts with awareness, so I think it’s time I take out a hit on myself. At least on the part that’s so lost in thought it leads to stagnancy. I can’t believe the trouble thinking causes. Has Tolle taught me NOTHING!?

So many days I have no idea what I’m doing or where I’m going or what’s going to happen to me and it results in either laughter or becoming totally overwhelmed. Where I used to fear change in life, I guess when things were stable and I was happy, I’ll sense an aching fear that things won’t change. That I’ll live and die in my parents pool house, an unpaid blogger with 37 chronic conditions. I can’t grasp where my place is among the world. Furthermore I can’t decide whether our place is made or reserved. Do we discover it or carve it out all our own? I don’t know. I only know that most days I feel far from either. Other days I feel close to a major turn-around; like something huge is about to sweep me up and change all of this for the better. But by the next morning we’re back to the ordinary. I’m taking my pills and moaning and Monty is doing his best to get me out of bed. Often my life feels like a raft drifting in the ocean in no particular direction, and the wind in all its thoughtless surprise is steering the boat, not really taking me anywhere at all.

Guess we're going South. Cool.
Guess we’re going South. Cool.

Monty and I roam around this town I’ve historically hated more like tourists than anything else. No one knows us by name, besides the pharmacist of course. We spend a lot of time at this coffee shop with the angry barista where I’m writing from now.There are girls here wearing the same uniform I wore in high school. They look so young and cute in their plaid skirts and Mary Janes. They seem happy and untainted and I like the way they burst out laughing at hardly anything. I can’t remember looking that young, a sure sign I’m getting older. Since turning 30 last year, I wonder a lot whether I’m really growing up or just getting older every year. I am surprised to have found the first grey hairs on Monty’s snout this year and I feel like a mother watching her kid go to the prom.Where did the time go?! There’s all kinds of proof that time has moved forward and carried me with it.  And yet my life could easily fit the bill of a 17-year-old in many ways. Some days that’s exactly how it feels. As my friends are advancing their careers and getting married and having babies, I still bring my mom to doctors appointments and often shop at American Eagle.

I understand the circumstances of my life are different and I have to make peace with that every day. But I also want to make sure I’m growing through all of this and not just surviving it. I guess I thought there would be a day when I reached adulthood, as though it were some test you passed, like the BAR, and then were a certifiable adult. I definitely figured as a child that by age 30 I’d have it all figured it out. Of course, I was young and blissfully stupid then. I couldn’t know how obscenely larger and deeper reality would become. I feel like I know less than ever before. Every answer springs up ten more questions. I’m uncertain of mostly everything except for the aggressive love I have for my dog. In short I have no idea if I’m getting it right. And I can’t imagine the day when I’ll feel like an adult.

V413782_RC093
Didn’t You Hear?!

However, I did notice something of note at Victoria’s Secret last week. It was a routine underwear buying trip and my spirits were high because there’s something weirdly exciting about getting new underwear. There I was at the 5 for $25 wrack; my go-to section for cute and economical briefs. But I found myself all disgruntled making frowney faces as I browsed the huge selection. They were all Lisa Frank colors or animal prints. But worse, there was writing across the butt. Things like “No Peaking” and “Shopping Burns Calories!” adorned their backsides. Dear. God. The colors were blinding and I felt out of my element. I then spotted the sophisticated 3 for $33 wrack out of the corner of my eye, where the colors are muted bronzy tones and the designs are laced in floral maturity. More expensive yes, but, as I held a silky pair in my hands, modest, pretty and free of TEXT on the ass, I felt at home. This is where I need to be. I bought my favorites and left smiling. So that counts for something. I think.

Forward!
Forward!

All these thoughts weigh heavy in my mind; stupidly, uselessly. But they can be thick and hard to control. So I take Monty to the river, where he is immediately in his element and I can catch my breath. Monty finds the largest stick in the vicinity and makes me throw it in the water again and again and again. His enthusiasm is contagious and I laugh out loud watching him put his whole head underwater to find the waterlogged sticks. Something about returning to the spot and seeing the river flow in the same direction it did last time we were here quiets my head. Watching Monty run full speed and splash clumsily reminds me to chill out. That life is supposed to be fun, and it only moves in one direction.( See above) Collapsing under the weight of those thoughts makes me feel dragged by the current instead of floating downstream. I don’t know exactly who I am, and maybe it’s something that grows and changes until the day you die. I only know that life and happiness aren’t somewhere over there, and I need to stop assigning them to a future I can’t know. Times will be hard and times will be easy, but there is peace to be found in all of it if I can just trust myself and forgive the experience. More than that there are dreams to be made! I just need to move out of my own way so I can finally jump off. Over the cliff–that’s where the magic happens. That’s where the Hollywood montage begins.

Health, Happiness, the Edge.

Living Masters

Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.

I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.

40 pounder
Unfortunately I think my brother later used this fish as bait.

Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.

It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I  had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.

By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.

Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.

The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.

I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,

We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” 

I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder. 

In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.

Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.

Health, Happiness, Masters

How To Come Home

I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege.  And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow,  the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion. And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am.  But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense.  I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

Stay tuned.

Health, Happiness, Home.