Brain Not Work So Good

I feel this modern artwork both describes what it feels like in my brain recently and also represents the clustershit that my writing has been. At least spaghetti brain can look pretty. The writing is a mess.

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I say the as if it’s someone else’s. My writing. Me. I’m doing that thing where I start out simple, on course, paving a promising path toward something that makes me think but that I can also wrap up and understand in the end. There’s never a lull for words or ideas. They pour out–I have a lot of time to think them up. When I’m not writing them in my notebook or typing them on my phone I’m usually just thinking of nice sentences in my head. I’m mind-writing. Just watching sentences fall into place mentally, perfectly, and I actually feel relief when these sentences are formed. The kind of relief you feel when you  get in your car the first time after you’ve cleaned it, and it was dirty for a long time before. It happened on the way home from the pharmacy yesterday. Sadly, I remember the relief more than the sentences or ideas. I tell myself I’ll remember this later, but I hardly ever do. On rare and momentous occasions, if I just sit down and start to work it will pop out like a wine cork. Ah! There it is. But I hesitate to think how much has gone un written because I wasn’t near a pen or a computer, or that I actually was but just didn’t put the effort into getting it down. Owell. That’s kind of a self-important thought. And, I guess we have to assume the work we never made, lost now somewhere between sleep and consciousness, was probably crap.

The words pour out not because I’m FULL of words and ideas, but because I have no requirements. Few expectations, no deadlines. No assigned topics. And no financial incentive. It’s just a hobby that I treat like a job.  Except that I’d be fired by now and there’s no 401K. Maybe I have too much freedom, so the meandering and circling is just too easy to do. I struggle because it starts off clean, on track with a promising topic and flows naturally in one direction. Then somehow it turns into the literary version of a flying cockroach, darting around clumsily in different directions and you don’t know where it’s gonna land next and you know when it gets killed it will make a crunchy sound. Sorry scratch the last part. I don’t know what it is. I like the words and concepts emerging,they’re just not always in order. Or they’re crap.

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Me Writing Crap

I know this will sound incredulous to some, but when I’m in a crash my brain starts to stutter and cloud way more than usual. In the past I’ve mostly been able to avoid the cognitive effects at least when it came to my writing. But I’ve been working on this post since Thursday. I know I know, easy to blame shortcomings on the illness. But the only reason I feel it is effecting me this time is because that reading stutter returned on Friday too, having to reread sentences over and over, and then just not remembering an entire page and having to start over. Luckily I rested mostly on the couch while Monty quivered near me at the sound of America’s birth, and two friends brought me food! It was nice. Yesterday I was more clear headed reading wise, and able to finish my latest read, The Invention of Wings, which was really great. There’s a lot of good little nuggets in there. And I was surprised and inspired to learn in the authors note, the two main characters were real–born into money and a large plantation in South Carolina around 1830. They would eventually became devout abolitionists and publicly denounce slavery and fight for its end, sharing the cruelty they’d witnessed with their families own slaves publicly, and the world didn’t quite know what to do with them. I enjoy characters like that. It was enthralling and I recommend it.  I need a book club.I just feel like I’d never show up after the first meeting. Anyway my mom says she’ll read it so that’s cool.

Where were we? My writing going in circles, right. I wrote for three hours on Thursday and three hours on Friday and collapsed like a whale on to my couch after both “sessions” and sortof spent the weekend that way. Yesterday when I revisited the words,  I realized I’d written over 4,000 of them, and some made sense and others were in the wrong places and would just require a re-organization of things. But I don’t think my brain can handle it right now. I’m leaning towards spaghetti brain. Noooo. Here, I’ll find another pretty picture.

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Nice, no? That Jaime Rovenstein is really good at creating non-crap. Check out more on her website.

Also, I think this is why agents exist. Why good writers have agents. Proofreading! There’s a word I haven’t heard since college. Maybe that’s what this blog is, one long proof-reading session and one day it will turn into something else that actually pays dollars and cents and I can get an agent or whatever. Or maybe I just need a small person to stand beside me and ring a bell when I’ve written and rambled more than 10 minutes. Now I’m doing that thing where I write about writing. So dumb. I should just write and post. I’m too cautious. I just want it right and I know when it’s not. DING, the bell rings.

I’m going to condense and summarize the absurd amount of words resting on a white page behind this screen. Because I Believe in Brevity!! That sounds like something..a campaign slogan? Specificity is important too. I accomplished neither, so I’m just going to sum it all up. OK. It starts with this sentence.

“I think the time for a typewriter has come.”

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How fun is this dudes art? Check him out.

 

Simple enough right? Then it drops off the edge. I find myself wondering if technology is aiding or prohibiting these things–writing, art, creativity and whatnot. Which somehow brings up the woes of scanning Facebook in the middle of the afternoon, and what those photos are actually capturing. I ask what it is about these photos that leaves me and others sad and yearning as we keep scrolling. (Authenticity, I think is the answer) Then I compare Facebook photos with those JC Penny photos a lot of us took in the 90’s, (dudes, the hair)  and explore physical momentos verses digital ones. Is my generation more or less authentic than the last one? Next I defend Millenials after continual insistence and wagging of the finger I encounter that says Millenials are all lazy, don’t know the value of hard work, we were given too much, have no accountability, and don’t appreciate what we have. This article is a great example which went viral a while ago and a few people posted it on Facebook like “Oh my God, so true.” Uhh, agree to disagree I guess. I agree that your point is false. Then, I deliver a personal conviction that it may not look like it, but I think as humans we actually are progressing, despite a lot of people my parents age saying the world is going to hell in a handbasket. I wonder if their parents said that too. And their parents parents. The fact is we’re still living among the good and evil that has always existed, which leads me to an exploration of that provocatively awesome question David Foster Wallace asked, which is, If we have all the things our parents never had and more, why aren’t we happy?

Let that simmer.

Then I wonder if is this a theme that has repeated itself throughout every generation. Always thinking the next one would surely have it easier. Each one working hard so the  generations after them might have what they never had, and do things they never did, and avoid the hardships that they had to endure. Maybe it’s hard to see that the world is still what it is, and human beings are still who they are, imperfect, after you’ve worked so hard to make it better. Especially if you worked your whole life to do it.

Maybe our notion of happy is off. Or maybe it’s not about happiness. It’s moving forward.

Then the neighbors fireworks got really loud and Monty was quivering below the desk and the writing turned weirdly patriotic. Fast forward from notions of happy and the formulas that work or don’t work, and also the American Dream. Achieving what we’ve historically called the American Dream does not mean achieving happiness. It means achievement. The happiness part is on us. The Dream is living in a country where we’re free to pursue that happiness pretty much any way we want. And I know it’s cheesy, but when you compare this country and our opportunities and freedoms compared to so many other places, we are danged lucky to be born into this one, with autonomy, opportunity and Chronic Fatigue Syndrome! Kidding. I think I have a very good life. I think a lot of people have very good lives and don’t even see it. Anyway this is the part of America that I’ll always be grateful for and humbled by, knowing the generations before me and the blood and sweat and tears that went into creating it, and I guess our job is to make their work and sacrifices worth it. I’m trying! I can’t say whether we’re a happier generation, I don’t know. But I think maybe the more important question is, Are we a more conscious generation? And to that I say, yes.

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

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 

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.

 

I Have a Time Machine

Here’s a poem I really like. It’s by Brenda Shaughness.

I Have a Time Machine

But unfortunately it can only travel into the future
at a rate of one second per second,

which seems slow to the physicists and to the grant
committees and even to me.

But I manage to get there, time after time, to the next
moment and to the next.

Thing is, I can’t turn it off. I keep zipping ahead—
well, not zipping—And if I try

to get out of this time machine, open the latch,
I’ll fall into space, unconscious,

then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.

There’s a window, though. It shows the past.
It’s like a television or fish tank

but it’s never live, it’s always over. The fish swim
in backward circles.

Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,

and sometimes like blackout, all that time
wasted sleeping.

Myself age eight, whole head burnt with embarrassment
at having lost a library book.

Myself lurking in a candled corner expecting
to be found charming.

Me holding a rose though I want to put it down
so I can smoke.

Me exploding at my mother who explodes at me
because the explosion

of some dark star all the way back struck hard
at mother’s mother’s mother.

I turn away from the window, anticipating a blow.
I thought I’d find myself

an old woman by now, travelling so light in time.
But I haven’t gotten far at all.

Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.

Pretty great no? It’s funny how some poems feel like they were written just for us, as if the author knew exactly where we’d find it and what it would do to us, hitting us in the gut in a coffee shop! Or heart. Our insides somewhere. I love this part of poetry. How fast it is. How in just a minute or two you can cosmically connect with a total stranger, dead or alive, and feel more seen or heard than you have by actual people. That’s powerful stuff!

I’ve recently been reading Anne Sexton–her history and her poems–and both are intense and curious and heartbreaking, but deeply resonant and I’m eager to read more. I plan to order someones cheap, used copy off of Amazon, and hopefully I’ll find parts that are underlined or circled with little notes in the margin. This is one of my favorite perks of reading (used) tangible books as opposed to electronic, kindle types; the human mark on the pages. They’re like little visceral clues of other life, but exceptionally personal. More confidential than say, finding someones grocery list, although there are treasures to find in that too. Maybe I am just an alien from another planet seeking signs of life and getting way too caught up in casual life leftovers. But somehow I feel less alone when I see a persons scribbles to the side of a page. Their unique handwriting next to that flat text against the page– It heightens the effects of the words. It brings the whole thing to life. It always makes me think that someone else sat alone somewhere, reading these same words and they were compelled enough to write themselves. Maybe it was there way of writing back, hoping someone somewhere along the way would read what they wrote and feel something. I don’t know, but there’s just something…nice, about that.  Anyway, I think I will start with The Awful Rowing Towards God. Or maybe Live or Die and go from there. Did you know that Anne Sexton had two sisters, and one was named Elizabeth Jane, and the other one was named Blanche Dingley? BLANCHE DINGLEY?! I wonder if Elizabeth Jane gave Dingley shit about that.

Health, Happiness, and Poetry. Pure Poetry. 

Under Water.

I need to spend more time under water.

Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem.  At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.

unnamed-2 unnamed

Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.

Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.

On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.

I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of.  The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.

So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?

Health, Happiness, Thirty One.