Tension of the Opposites

I often forget that my life is somewhat unconventional– That it requires further explanation to obvious meet-and-greet questions. I forget that answering the typical questions that arise with meeting someone new or catching up with someone old will often start a domino conversation effect that can go any number of ways. Sometimes it’s unintentionally critical questions, sometimes it’s the strangest of medical advice, and other times it’s this awful but easy-to-spot look that no matter what words they’re saying, it’s only the word doubt that’s written all over their face. Of course they’re not all this way, and sometimes when I let down my guard and am honest about my circumstances, it opens the door to friendships and closeness I would never have expected. There’s something about sharing a hardship (without being overly needy) and being heard openly, that evokes a certain trust between two people. It says I have seen the darkness too, and the space between them lessens.

There’s a whole spectrum of reactions, and even though I forget temporarily, for the most part I’ve grown used to and so prepare myself for the array of conversational tones and and twists and turns our exchange may take. It took a while but by now I can usually see where things are going fairly quickly and attempt to steer a conversation going nowhere either back to the other persons life or to an entirely new subject altogether. It’s for the best. Outside of the new and complicated, sometimes awkward anecdotes that come with simply talking to a person, my life feels very normal. On a personal, day-to-day level, I’ve grown used to the terms by which I live, and it’s usually when I share these terms with someone else, my large set of footnotes, that I remember how not normal my situation is. I long for the day when I can complain about my jerk boss, commiserate about the insane landlord of my apartment, (which in my fantasy always has big windows) and when my roommates are no longer my parents. No offense to them–they no doubt long for that day, too.

Living life with a chronic illness means a few things for me: It means being 32 and not working a real job. It means taking 25ish pills a day and still living under my parents wing. It means a lot of solitude and a lot of talking to the dog–probably more than to humans. It means I typically smell like BenGay or peppermint oil, and wear an ice pack on my head almost always. These things have aligned themselves under my own heading of conventional. They are my normal. But I forget that they’re not and require an often long, boring story that explains “my normal” that I’ve grown to cringe whenever I have to tell it. Reciting how and why you arrived at here and now, over and over and over out loud, you almost start to feel like a phony. I don’t know what it is, except that maybe after so long of recounting a story, one that could easily be labeled as unfortunate, in such a casual tone of voice that’s inarguably bored with itself, you begin to question how it is that you’re happy. How it is that you consider such ridiculous conditions as if they were commonplace and acceptable. You start to wonder why you aren’t more up in arms about the whole thing.

I don’t know when it became such a frequent place to end up, but lately I always find myself hanging in the tension between two opposites, struggling to find the fragile balance in the middle. Feeling bide between two of anything is usually unsettling at best, but can often (for me) be exhaustive torture. The two forces aren’t necessarily always polar opposites. Sometimes they’re merely dissimilar, but operate on the same plane. Think surrender and giving up. Gone unchecked, one can quietly ooze into the other, and suddenly you’re nowhere you ever meant to be. Sometimes they’re contradictory forces: maybe your heart wants something that the head doesn’t like. Other times it’s reconciling two truths at odds, choosing between two options and stuck in the messy mud of the middle. Since I consider myself pathologically plagued by indecisiveness, I seem to find myself living in this “tension between two” all the time. It’s trickled its way down from me flailing between two important choices, to agonizing over things as inconsequential as toothpaste. I’ve spent way too many hours of my life struggling in that aisle.

Currently, I find myself in the center of multiple conundrums, questions, opportunities, examinations.. Not all of them are quantifiable, and many of them seem to be ongoing or recurring. I lay in bed at night and the questions fly around the room like some kind of adult mobile made of cosmic curiosities and pitiful choices. Here’s an example of the things my brain has been tangled up with lately:

*How do I surrender to my circumstances and accept my reality without giving up on trying to make things better?

*How do I talk about being sick without getting caught up in my story?

*How do I write bearing the reader in mind without compromising authenticity?

*How do I maintain a sense of autonomy and identity knowing full well I am reliant on the help of others.

*How do I engage in advocacy that is proactive and realistic without losing myself and my worth in every day outcomes?

How do I satisfy this sweet craving without overdosing on gummy vitamins?

Welcome to what Carl Jung called “The Tension Between the Opposites.”

Jung taught that if you can withstand the tension between two opposites, if you can sustain the angst of being suspended in the middle for longer than what is typically comfortable, often possibilities and solutions will arise you wouldn’t have considered before. It can be an enlightening experience, but not easy, and often painful while in the thick of it. The waiting is tough. But if you can hold that tension, you’ll usually encounter what he referred to as ‘The Transcendent Third’. This new ‘third’ solution can involve both or neither of the two pieces you’re between, but in the wait, you can reach deeper into consciousness, and often that’s where the wisest answers can be found. “There will be two opposite approaches for solving it. Neither solution will be correct, but must undergo the tension that will result in a third approach.”

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“There will be two opposite approaches to solving a problem. Neither will be correct, but must undergo the tension that will result in a third approach.”

The world is so fast now. We rarely take the time to be still, to even allow a silence, mistaking it for boredom, or a space that must be filled. If you’d like to experience the discovery of the Transcendent Third, you have to answer the question that Lao Tzu posed on the matter: Do you have the patience to wait until your mud settles? I’d say most of us don’t. Or we do but fail to realize it, living among a pace that’s fast and noisy and nearly impossible to keep up with.

Lately I’ve given a lot of thought to the concept of surrender; something I continue to learn and accept almost every day it seems. Among everything that being sick has taught me, surrender seems to stand out the most. Difficult beyond words, but once allowed in, it can feel like you’ve been given a glimpse of the divine. It can be a beautiful thing, but for me, learning it didn’t come easily. Or all at once.

For years before 2011, my body spoke to me in a language called pain. Fatigue. It said slow down, stop, you’re not getting any better. And for years I downplayed, dismissed, and sometimes outright denied to myself that there was a real problem. As things were falling apart inside, I strived to hang on to all the attachments that the illness slowly started to take.  I thought as long as I could keep my job, it lessened somehow the reality of having a disease. It diminished it to an anecdote. I had it, but it didn’t have me. As such, surrender came in pieces. Determined as I was, I couldn’t bare the tension of working, being sick and trying to get better. Convincing myself I could multi-task, I was actually just failing at three at once. Hah. Something had to give. I

will never forget that conversation in Andrews office, me holding back the tears as best as I could, saying I didn’t want to go. I had done my best, but my body just couldn’t take it anymore. Neither of us wanted me to worsen. We hugged and said that thing people say even when they know it’s not true. “I’ll see you again soon!”  Don’t worry, I told him. But he did look worried, something in his eyes. I punched my time card for the last time–yes the 100-year-old gallery still used time cards. On that drive home across the bridge to my parents house, I cried the whole way. I felt more lost and afraid than I ever had.

That was the end and the beginning. The next two years would be the hardest–the most brutal on every level. I resisted. Lied to myself. Conceived of ways I could return to the path I was on before getting sick. It felt like someone had sat on the remote control of my life and accidentally pressed the pause button. There was an incessant feeling that wherever I was, there was somewhere else I should be. Not this. Not here. I was sick when I should be well. In California when I should be home. At home on a weekday when I should be at work. I never had an inkling that Yep, this is right where I’m supposed to be. I thought if only I could survive this “wrinkle in time” I could resume the life I’d had before. Just like that. As if time moved in any direction but forward.

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Bye Old Life

I’ve had six years to adapt to the life I would feel proud to call my own again, but it certainly wasn’t  the one designed by my hand. I think the final straw that led to surrender was simply a matter of being too tired to fight. Somewhere after year 2, I let go of the last of my life plans–fed them into a shredder and watched as little paper ribbons emerged. Surrender. One part complete fear, one part total release. In hindsight it’s clear that the fear was mostly ego-driven. If I wasn’t designing my own outcomes, who or what was? And by the way, who could know the path I should take better than me? (Laughable now)  But the release had one up on the fear. It meant making room for the life that was waiting for me to finally begin. In fact I was the hindrance. I was the one sitting on the remote.

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My Life: Mid Rise Skinnies

After six years in the game, my life doesn’t feel foreign or as though it should be another way. It feels more like a perfectly worn-in pair of jeans. The ones where the denim is at that awesome level of soft and is tight and skinny in all the right places. I think jeans are one of the most personable clothing items. Have you ever tried someone else’s jeans on before? It feels like trying on clown pants. In the beginning, that’s what being home on a Tuesday at 2 pm felt like. Now that’s just business as usual.

I now struggle with the idea that if I surrender too much, if the circumstances of my life simply feel normal, I’ll become complacent. I’ll forget that it shouldn’t be this way. I’m not supposed to be sick all the time and spend vacations half conscious on the couch. But it’s become the norm. I don’t want to become so desensitized that a bookshelf filled entirely of my prescription bottles doesn’t shock me at all. And I don’t want to lose the fire in me to change the things we need to change, as a community that fought long and hard before I ever came around. I want to embrace and be happy where I am, but I want to be proactive. And so I’m trying to find the balance between enjoying the present while also remembering that there’s an injustice at play here, something that needs fixing. And I know that I have to try and help fix it.

I could easily be the one too sick to fight, just like millions of others with MECFS are, but I’d have no doubt that the warriors in the community would continue to work until it’s done. The baton might change hands but the balance remains. And just because I’ve tapped into joy and surrender and gratitude where I am, doesn’t change the fact that I am part of a community, one that has fought for this cause for decades. I owe it to them to do what I can. I am constantly seeking a way to advocate for what I know is right, but remain distant enough that my ego doesn’t get drawn in to the wrong efforts. It happens all too easily.

A very strange thing that might be hard to believe– I don’t actually love talking about being sick. Gasp. And I feel that I’m kind of terrible at the whole advocacy thing. Luckily online my awkwardness doesn’t shine through as much, but it’s still a struggle for me to solicit people to help, even though I believe 101% in the cause and am certain I’ll continue petitioning and fighting for it until the deed is done. But how can that be?How can it be true that I don’t like talking about being sick and yet I have an entire blog devoted to very subject: “Life through the sick lens”?

I’ve toyed a lot with these opposing truths and tried to understand how I could want both. And I think the answer is somewhere near this: By speaking honestly about the experience, particularly the chronic illness experience, which I found to be largely misunderstood, and by foregoing the typical polite response or social etiquette and supplementing it instead with what is true, I open up a space for us to move closer together instead of further apart. By writing about a topic that can be very isolating, I’m attempting to give people a chance to understand, instead of blindsiding them with “Well I live in mismatched pjs and I haven’t showered for a week because I’m too weak to shampoo my own hair and oh, you’ll never understand!” (Runs out of coffee shop. Trips. Continues running.)

Contrary to what I hear people say all the time, the world is actually full of good people, and most of them aren’t trying to hurt you. 99% of the ones I know are exceptional, and they are sympathetic and helpful about my situation when given the chance to be. But you have to be willing to reach out, which means you have to expose a need, and sometimes that’s the hardest part of all. I only know if I keep too tight a lid on my own unusual experience, hellbent that the world will just never get it, I will most likely be right, but it won’t be the worlds fault.

So, life continues, seeking out the peace in the middle. Waiting patiently for the right answer to arise in so many scenarios. And holding the tension between opposites long enough to tap into something deeper and wiser than I ever could be. It’s not the easiest thing, but it sure beats pulling my hair out between Crest Multi Care and Colgate Total at midnight in Walgreens. The point is to be still and patient, wait for the mud to settle, and allow enough time for my own transcendent third to arise.

Health, Happiness, Settling Mud

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What Makes An Illness Invisible? I do I do!

There is a certain hesitation that comes with being sick with a disease they refer to as “invisible.” Who are they? And why do they call it invisible? The they is simple; it’s not so much a reference as it is a perspective. People and doctors don’t tell us our ailment is invisible. They simply don’t see it. And when you’re sick, especially for a long period of time, you become keenly intuitive about who sees it and  who doesn’t. With someone who does, a certain ease settles in, as though you could wink at one another and understand it completely, even if you’d met minutes ago. Your guard goes down. Shoulders relax. That apologetic tone leaves from your voice. Those who don’t see it, or don’t fully “accept” it, and it makes sense that some wouldn’t, by the way, given this disease is not visible and is rife with evidence that it’s psychiatric or something else, we can sense that just as quickly. There’s an immediate undertone of tension, it makes my cheeks hurt while talking, the way eating a lemon does. I can feel my defenses go up. No matter how strong I’ve become at sloughing it off, doubt or judgment, it still stings. ‘Rubs salt on the wound’ as they say.  It makes me want to explain everything, from the start, “No wait, if you just listen to how it all went down, if you knew how I was before this, what it’s like most days…” but it’s useless. For them but more importantly for me. For us. I have to cease needing the validation from others and just trust my inner self. ‘Choose your battles wisely’ they say. Turns out they say a lot don’t they.

I think about The Truth, the eternal one that we’ve gotten wrong so many times, absolutely certain with documentation and everything that we were right and that was that. And yet the world remained round and the sun chilled with black sunnies on in the middle of the earth revolving like dude, yall are way off. The truth has never required us to imagesbelieve in it in order for it to remain, and that often brings me comfort. It’s my ego that seeks the validation. Still, I’d call it’s pretty reasonable that you’d rather not be seen as crazy or a malingering pansy particularly in a vulnerable time of your life when you’re sick and need support. But this is another “invisibility factor” of the illness. And it matters because not being believed is a psychological kick in the brain. Or face. And that’s just it. We don’t look the part on the outside. People can’t see pain. Or a headache. Full body weakness. Mental spaghetti. Vertigo. The hit-by-the-truck feeling. Yada yada yada. All there is for “outsiders” is our word, and some take us up on it, others don’t. I’ve been surprised observing the fluctuation of strength in my own word, depending on who it’s being exchanged with. I’ve been struck that a doubter could make me doubt myself.

Besides not seeing it “on” us, most doctors aren’t going to see it “in” us either. Invisibility factor number 2. We’ll give gallons of blood and urine samples and get x-rays and MRI’s and whatever other procedures they can think of that insurance doesn’t really wanna pay for :). They may find little things, but for the most part it will all come back normal. Yaaay! Normal. But let me intervene quickly that the American medical term for “normal” is a bit flawed if you read how the numbers are configured, but that’s another issue. But the point is: invisible. Again. Even in our blood and our brains and our tickers! Sometimes they find little things off here and there, but in no way would consider this a part of ME/CFS, they’re all isolated symptoms. And so there you are either in an ER bed or sitting on the crinkly white paper of a doctors’ office being told you’re in fine health and that this is good news. But it’s also important to point out here, often these tests are ‘normal’ because most doctors aren’t trained on what to look for in regards to this illness. This isn’t taught in most med schools. There’s no standard diagnostic test yet which make makes things harder. Invisibility Factor Number 3: no research. The things a specialist test for are far more in-depth (and expensive) than a regular doctors work up: like NK cells, cytokines, CMV, HHV6 and many more. Right now, due to the lack of these specialists, it’s basically like having cancer and visiting the foot doctor. Welp, everything looks great to me! 

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I mean this is just a great picture

Still, a large man in a white coat, his degrees framed behind him, scanning through your labs and telling you you’re fine, to get outside, drink more water and eat more protein, (my experience) well, it encourages doubt. Even though I knew otherwise. I know what I feel inside, and it does not align with what I’m being told. And yet, when someone challenges your thinking, someone bigger and smarter and who you’re supposed to trust, you can’t help but consider that they might be right–thus, you might be crazy. Woohoo! But it’s important to recognize the reality of the situation right now, and also that this it’s changing. More doctors are being educated about the illness and presumably in the next ten years, you won’t have to travel to other states in order to find one who knows more than you about it. Not to mention, doctors make mistakes. They are humans after all, and they don’t know it all. So often after a bad experience with a doctor, or anyone for that matter, I have to remember, (or my mom has to remind me) that this is vastly misunderstood right now, and people aren’t acting out of malice but from misunderstanding. That lack of understanding is just beginning to change. Slowly. And you know what? I think the petition may end up helping with that. That’s my hope, anyway.

A friend of my mine asked a while back “Have you ever considered that they might be right, that this might be more of a psychological thing, and you could actually be cured by pacing your exercise and receiving cognitive behavioral therapy? Or do you feel totally positive that it’s a physical disease?” This is all under the umbrella that I fully accept and believe that mind and body are connected and the health of the mind is intrinsically tied to the health of the body. Still, this topic is not being brought up so much in the same way with other diseases. The intention is different. I admit didn’t know exactly how to answer. I felt like “techinically” the right answer was, yes, they might be right and this might have a major psychological component that could be an intrinsic part of it and a part of curing it. I should have to consider that these psychiatrists might be right. But I couldn’t do it. Even though I have looked at myself in the mirror and asked that question, considered this  many times Could I be crazy? Could this all be a front, could I be a mildly insane hypochondriac? Or could this all be ignited by something psychological from my childhood that I never worked out?” These doubts have run through my mind more than a few times. But in that moment, despite by own past consideration of other possibilities, I truly felt like a monkey being asked, Are you open to the idea that the others might be right, and you might be a giraffe? I answered in solid faith even though I felt myself nervous to do it. “No, I’m sure that’s not the answer to this.” I was in that moment, a total  monkey.

I am an indecisive, uncertain person by nature. It takes me twenty minutes to pick out what to wear, including pajamas. (Ahem, that’s what I wear)  I doubt and question myself a lot. I feel like I’m still learning how to be who I am. But, I’ve had twenty years of this invisible illness and gone through the ringer of its effects, felt deeply the losses it has caused. I’ve watched what it does to my mom, who I trust. I’ve read the stories and comments of thousands of others with experiences uncannily similar to mine. High functioning, happy people, (SANE PEOPLE) who had a rug swiped out from under them and were never the same. I think of the extremely current research and that of the last five years. I think of Lauren Hillenbrand. Of Whitney Dafoe. Of my doctor, Nancy Klimas. And I just can’t imagine at this point, that all of this comes back to some psychological trauma that just needs to be worked out with behavioral therapy and physical conditioning. This is what is being touted as a legit cure in many countries, including ours, but particularly England, Australia and a lot of Europe. This illness can be triggered by a psychologically traumatic event, but this only points to another pathway in which, whatever this disease is categorically, (presumably a virus that takes advantage of a vulnerable immune system) that it has varying opportunities in which to intervene. This doesn’t make it a mental illness. And even if it were, it still doesn’t justify the way it’s been treated up to now.

I wish I could say that I’ve never doubted myself or the disease again. But I have moments where I do question myself. But I think that’s normal. Enough people question your your point of view, inevitably you’ll question it yourself. I know that there are many more invisible diseases besides M.E., and that a lot of people have felt isolated by the facade it produces. I hope if they’re reading they know they’re not alone, and they’re not crazy. They’re just sick, with whatever: ME/CFS, Depression, Fibromyalgia, Arthritis, Lupus. I have moments where I forget what it’s capable of and crash myself for days. My mom always tells me, don’t play ball with this disease, it will always win. That’s typically how I’m reminded of reality when I doubt it– the state of my own body. It’s hard to doubt your own illness when you’re struggling to walk. And if that somehow isn’t enough, I close my eyes and go back to my inner, inner self, where the truth lives in stillness, without interruption. Where the world is flat. Where the earth orbits the sun. Where an invisible disease simply hasn’t found the cause or cure, but one day soon will be seen, will be believed, but most importantly, will be cured.

Health, Happiness, (In)Visible

P.S. The petition is still live and running! The new goal is to get to 50,000 signatures before I formally present it to Collins and Burwell which should be in July. I promise this is the last high goal. We stop at 50. And if we get there, I will sing a song on camera that I wrote called “Chronic Fatigue Syndrome and Other Associated Conditions” and post it to the blog. It’s two chords, and worth seeing. Mostly to watch me make a completely humiliating knucklehead out of myself. So sign!   Good night.

Hangers On a Ledge 

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become   bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers 

Love Letter To My Valentine

My love,

I’m well aware of your rare but genuine lack of sentimentality, and me addressing you on Valentines Day, one of those Holidays that makes all the whites of your eyes show when you roll them, is at least a little funny to me. I didn’t buy you one of those trinkets we often laugh at together. A “Blessed” keychain or one of those wooden picture frames with the non sequitur adjectives sketched in, meant to communicate love I guess. Love. Family. Hope. Frying Pan. Coffee Beans! Maybe we’re too young to be such skeptics. Maybe it’s our hiding ego, projecting superiority that we don’t need kitschy picture frames to allude to what’s real and shared inside of us. I’m in the card aisle at the pharmacy looking at a criminally large sized teddy bear holding a heart. It says I wuv you on it. It’s similarly tacky, but I consider purchasing it just for the laughs I know we’d have due to the scale alone; I actually don’t think I could carry it on my own. Then we’d feed it to Monty and watch him go straight for the eyes, as always, and fill the room with the cotton candy innards of a fifty dollar bear. But I hear your words play out in my mind “Don’t ever waste a dime on crap like that for me.”

I could lament about the commercialization of Valentines Day, but I think it’s all been said before, and I already know you’d agree. In fact I’d bet the farm you wouldn’t even bat an eye were the whole thing eradicated. You might not even notice! You’re funny. It’s not that you’re distracted, unaware. I’d suggest it’s the near extreme dedication to living a life of unwavering, powerful love, that is a fireworks display of a spectacle to watch. But for a lucky few, myself included, it’s a humbling miracle to be the recipient of. It sounds so dramatic to say, but I stand by that belief. It’s not hard to do. There have been plenty of reasons for your heart to have closed shop by now. To crack and break and crumble; call the whole thing off. And yet I’ve witnessed it come to the edge and never truly break. Instead I watch it explode like our day lilies in the spring, I watch it grow, astonished, in times that might normally make a person very small. And still yours expands, stretches, finds strength somewhere far in the depths and suits up for another day, knowing well the many things at stake when we agree to live a life. When we agree to love deeply. I don’t know exactly how one attains the capacity to love like this. I can only speak to the immense gifts of wisdom and friendship and compassion it has provided so many lucky ones, and me, knowing too well that ‘thank you’ isn’t large enough a phrase. I think how redeeming and salvational some of its outcomes have been. We’ve all experienced the pang of loneliness, and these last few years have shown me with unbridled truth just how far off and away we can feel, whether in a crowded room or a self-made island. Illness lends itself to its own kind of solitude, that can swallow you up whole if you aren’t prudent. Never have you let me drift too far down the rabbit hole. Sometimes sitting in a room with you, watching The Voice or Scandal or something I have no particular interest in, I feel wrapped in a sanctuary at the center of cupped hands, protected by the thick walls of a steadfast love that I know can never die. For two stoics like us, I can’t help but think ours is a Fairy Tale love, without an ending. We both know there won’t be one. Maybe I’ll submit it to Disney.

I keep thinking of this moment. A grey morning in December not long ago, I was more sick than usual. My central nervous system inflamed to a point that I could hardly tolerate sound or speak. My skin was buzzing, my hearing hurt, my thoughts and words felt and emerged mangled, and I couldn’t exactly articulate what was wrong. I felt like a shaken up liter of coke, hardened and about to fizz out everywhere, but there was no outlet. No where for the ‘fizz’ to go. My nerves felt inside out. When you came in the room, I tried to express what was happening but had trouble; honestly I hardly understood it myself. You didn’t look away, or demand answers or try to immediately “fix” the enigmatic pain I was in. You only said a couple words to me as you sat down on the couch and cupped your hand on the back of my head. “It’s going to be OK Mary,” and your voice cracked when you said it. My body felt as if it collapsed inside, calmed with this soundbite of peace, and the pressure slowly eased from that liter coke bottle. Tears came streaming down my face. I wasn’t that sad, truthfully. Certainly, all of this has been a trying time, for all of us, but there was a lot happening at once, my mind and body both being pulled and torn in different directions, and your very simple words allowed me the outlet. Permission. It’s pretty common for the tears to come when I feel so overwhelmed, overtaken physically. But it wasn’t your words exactly that moved me and conveyed your love with such depth. It was that your voice trembled when you said them. Just barely, and you’re not a crier, I know. I believed you, too, that it would be OK, but in that moment, you saw me. Accepting there was no quick answer here, no advice or platitude that could lift my heavy burden, you did the bravest and most beautiful thing a love can do: You sat down next to me, you put my hand in yours, and you shared what would normally just be my burden, my pain. You didn’t take the pain on, but you faced it with me. If only the world knew they didn’t need perfect words or answers to comfort and relieve us when we’re in the thick of pain. If only they knew that Love listens far more than it talks. A shoulder can mean more than a mouth. Love shares, it communes and confides. In joy and in pain. This is love. Our love. You helped carry the parts that I could not, and turned on its head what felt like momentary hell into saving grace. Just the memory of it strengthens me now.

This made me think of Nepo’s definition of Love. One I come to again and again, the most eloquent I’ve ever heard, and I often find myself reciting the words in my head: talking with friends, watching birds, kissing Monty. Somehow through your small action made with great braveness, your love materialized in a way I could not only feel inside with warm intensity, but could touch and see it, feel it in your hands. His definition for love is only this: Sudden Oneness. How perfect these two words capture what We shared that mangey morning. I warred with my same broken body, but I was also slipping into the outskirts of doubt and hopelessness; a place you know but helped lead me out of. His words so perfectly explain why when you love someone deeply and true, that when they cry you cry. When they’re happy you’re happy. Their joy is yours and vice versa. This is the beauty and brilliance of the oneness from love: lightening burdens and multiplying grateness. My tears continued but something about your unconditional nature made them begin to carry new truth in their waters. Hope, I think. Surrender. Reassurance.  But it was this small gesture that mattered most; allowing me as the mess I was, seeing and hearing me and not turning away or trying to quell it with empty phrases. I know how hard it must have been for you– the only other soul in that dark room, while mine laid strewn on the floor like a discarded garment. It’s not that you saved me, necessarily, but you saw me through the darkness. You stayed. So many fear that stillness of pain, enduring the murkiness of life when there aren’t easy answers to offer someone. You helped see me through it, bring my tired heart back into the light, ready to try once again. But first you let me die a little. Shed a skin I didn’t need anymore. Another testament to what brave love can do. Little deaths prevent big deaths. That was Nepo too.

It’s interesting, but when I recall this whole ‘event’ now, we seem to be alive inside a pocket of timelessness. There we are, the two of us, enduring what we did, frozen in an exchange that felt unearthly, and I can’t for the life of me feel or remember the passing of time. The moment is still alive. The lessons are wide awake, and they pour through so much of me: My fingers when I write. My soul when I’m discouraged. My intellect when my respect for the novelty of life drifts– I think of you and our moment and I know that there is meaning behind the pain, but it requires seeking. And luckily we don’t always have to do this alone. The Oneness that enveloped me, I think in fact may have been my first real glimpse of Forever. Or Eternity. Whatever the word for that otherwise incomprehensible concept is, for a fleeting moment I caught it, like a fast grab of a buzzing fly, followed by thick silence. In this excessively brief lapse in spacetime, I glimpsed the two of us–we were not just not apart, we were the same. We were one another. And the comfort was greater than a reunion you’d imagine would bring great joy. It comforted me. Humbled me. A powerful experience no doubt, but mostly mom I’m just plain grateful to know and learn from you this way. You’ve mastered a difficult and necessary art, and expressed and given it the way that you do, it’s something that will last far after you. And me. And my children too. Perhaps like Einsteins theory come to life one hundred years after the fact, that little ‘blip’ on a device recording an explosion a million years old, your love ripples will be felt long after you’ve gone. This is the miracle of true love. It’s so huge and yet it can be easy to miss. Like looking for mustard in the fridge tirelessly and finally coming upon it on the middle shelf in plain view, right in front of your eyes.

For me, this is incredible news! I half-knew already this was true. Losing and still knowing dad, our love somehow still growing, I knew it had to be real and not just the stuff of voodoo or fairytales. So I rest more assured now. One day you’ll die, and if life is good to us, it will be before me. But I don’t fear this occasion the way I once did. I know it will hard. The pain will be deep, as loss is not a one-way street. You lose more than a person, you miss a piece of who you were with that person. But like my clearly favorite Nepo says, Grief is a sign we loved them well. It’s in living this life, that when we give and receive love in its pure form like this, unconditionally, that it sustains and lives on. It works miracles! And it removes the sting and surprise of death, a thing we treat with pretty odd behavior in my opinion. But anyway, I can’t lie. I’ll be a mess. A sobbing heap on the floor. A shaken up bottle of coke. And where will I go? How will I recover? As I was taught of course–I’ll remember that moment of your bravery, to see your kid in pain once again and have to surrender; to be at peace with the mystery of these things. Just as you saw me through that, I learned that these moments actually do pass. That life does go on, the pain isn’t forever, and we wipe up our mess and keep going. I learned that because you lived through it with me, not because you sent a card with a bow that said “This too shall pass! Call if you need anything!” You are living love, in a beautiful form, and you are doing incredible work in the world because of it.

Perhaps by now it’s become apparent that I’m single. (Haha) But I can’t think of a more deserving Valentine, a bigger barer of gifts who never seeks out recognition or accolade for loving this well. You seem to perform the duties of love effortlessly, and I’m not only grateful to have you around and receive them, but I’m happy and feel lucky to learn what love is through you, how to give it and accept it from such a master as yourself. You’ve been through enough pain for 10 lifetimes, but I’ve never see you throw in the towel or give way to bitterness. Sure, you’re still a human being and a mother and you’ve made your mistakes. We all have. But you’ve never faltered on love and it seems to grow larger and more powerful in happy and hard times. Perhaps this is what the pain of experience does for us. I don’t know. I’m still learning. But watching your resilience and continued faith in life, in things bigger than you and me, in good things, in eternity, I know I’ll never stop seeking the answers. I’ll never stop trying to find the good, the value, the meaning in every kind of experience. Including the dark ones. Perhaps especially those. Thank you. For all you’ve done and continue to do. I don’t know how you’ve not collapsed yet of exhaustion, but maybe all that loving you do is an energizing force. It certainly is for me. Thank you. Keep going.

Oh yeah, Be Mine?

I love you.

Health, Happiness, Modern Romance

7caojdadi

P.S. I extend this letter to Marc, Doug, Nick, Amelie and their significant others for pitching in in all kinds of ways, helping carry me through the crap times, and loving me so well. You are all my angels. Thank you.

Adjusting the Perspective on Pain

What is it about Winter?

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider.  And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here)  They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

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The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS. 

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Health, Happiness, Perspective

P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/