The Catch-Up

A suitcase lies open in my hallway still. Anyone care to guess how long it will stay there? Mine is a week and a half, but who knows. Maybe I’ll get energized this afternoon and lug it to my closet, where I’ll continue wearing clothes out of it as though it were a portable dresser. That’s basically what it’s become. And hey, that’s OK!

Returning home from travel has it’s perks—like climbing into your own bed, returning to a dog a like Monty (who, if I’m being honest, exhibited roughly 5 seconds of excitement and then acted as if I’d never left at all). Walking into your own place of familiarity and taking a deep breath. Ah, so this is what my place smells like. Not bad! Even if you’re sad to have said goodbye to the people visited, a grand relief always seems to accompany coming home. Unexciting, mediocre, quiet, deer-less home. What’s tough about it is the game of catch-up you’re about to play.

As soon as I enter the front door, all the projects that have been mentally stacking up, making their way onto various to-do lists over the years seem to glow brightly, asking to be next. I feel a wave of inspiration- paint the sunroom! Organize my closet! FINISH PART 1 OF THE PETITION PROJECT. (More on that later) Paint the armoire! Return my 10,000 plastic bags to the grocery store. And these are just simple tasks, even if some are bigger, more time-consuming than others. I bought the paint for my armoire, Parisian Grey, two years ago. It’s been perched on top of it as though it were real decoration. And none of these include the creative endeavors I’ve been dreaming of starting or working on or finishing the last few years. They’re just things, most of them. And yet they take years to do. Years! Again, ridiculous.

There is so much I feel I have to do. I have to finish. And ever since entering the world of advocacy, those tasks take an obvious precedence and a new urgency over the rest. But traveling means you not only ‘check out’ of your little world a while, it also means you don’t get to return to it just because you’re back living in it again. You have to recover first. I always feel a small sense of guilt when I travel, because I know it will be a hindrance to finishing the important things. I always fear a loss in momentum, so I go over my plans in my head like a song on loop before falling asleep. Until they melt and I can’t remember what I’m even thinking about anymore. But I’ve written about plans before—they’re about as solid as jello. Anyway, the plans are a basic timeline of the things I’ll do when I get home, but that means about as much as saying “one day.” Still, you know how making a list makes you feel organized, even if you do nothing on the list? I guess it’s like that.

Because where do things lie, actually? For starters, my suitcase lies open with clothes spilling out like the innards of a science class frog. I couldn’t even be bothered to wheel the thing to my closet or bedroom. We arrived home just after midnight- Marc wheeled the suitcase to the hallway and that’s where I laid it down, put on my pajamas, and immediately climbed into bed. From there I spent three days. Poor Monty, a boring few days for him I imagine.

I was out of juice. Is this a poor excuse for leaving a suitcase in the middle of the hallway? Sure, fine, an excuse. I don’t care what you call it, it’s simply the case that when you’re physically weak, in pain, running on empty, your priorities become very compressed. They almost become easier to sort and identify, because your options are reduced. A lot of people seem to be under the impression that more choices are a good thing. But when I stand in front of the toothpaste aisle and there are 40 different tubes to choose from, I sort of just wish there was one or two. If there’s only two to choose from, or if one costs 5 bucks and I’ve only got $3, well then there’s not a whole lot to think about. That kind of thing.

You know what else is on my list? Laundry. Nothing but a regular old chore that I, like my mom, happen to enjoy for some reason. (I also love ironing, if I can sit…) However, the washer and dryer are at my parents house. That means walking the approximate 20 steps there and back and there and back holding a basket of heavy clothes. Darks, whites, delicates. Are you bored yet? Me too. Is laundry a hard task? Of course not! If you have the energy to do it. But when you’re playing catch-up, calculating every move as if it were dollar bills you had according to a daily stipend (or see the spoon theory) then there just isn’t enough money for tasks like this. At least in the beginning. And I was considering painting an armoire! Hah. Hah.

I realize that people with a shallow knowledge of MECFS might roll their eyes at this ‘predicament’ if either of us would even call it that. (I wouldn’t actually, I’d call it the simple and unfortunate state of things) Yeah, laundry is a pain in the ass. So is unpacking. 20 steps to your parents? Get. Over. It. In fact sometimes I think these thoughts myself! But, they don’t really help, so I let them go. The point is, I can see why this thought pervades so many people’s minds, which is to say, I can see how much work still remains on our plate when it comes to this disease. The Post-Exertional-Malaise part of this—the hallmark symptom and also another name doing zero justice—is also the part that no one sees.

I realize I’ve written about this before, and it’s not my intention to be redundant, but it’s not as if this is a publicly, well-understood or moot point. It’s one of the biggest features of MECFS that people have the hardest time making sense out of. That includes people with the condition! Both are understandable. Unless you live with someone who has this, you don’t truly witness the price attached to attempting to live in the real world a while—which if you’re moderately functional, or can play that way at least a little while, you’re always going to try. The soul needs what the soul needs. But the body pays a price.

This doesn’t even mention that you could be one of the hundreds of thousands, or more likely millions of people who return from some normal life event and pay a price in the form of a crash; weak, heavy, dizzy, pain, brain-slow-as-sap—and they do live with people who see it. Does this mean they believe it? No, it does not. In possibly more cases than its’ opposite, the sick person is assumed a malingerer, lazy, aloof, or hysterical. (Ah, if only I had the energy to be hysterical. Wait I’m hilarious, I take that back) I can’t imagine the crushing doubt from people I love, stacked on top of a crash I’m earnestly trying to climb out of. And the fastest way to regain your strength is honest-to-goodness rest. And guess what laziness looks like? You see the problemo there. In this way, I’ve been extraordinarily lucky. It doesn’t mean people ‘out there’ always smell what I’m cooking, but how could I care? I’m hardly out there. The people closest to me are helpful, supportive, encouraging and compassionate. You know, the things you crave when you’re sick. Imagine being eight months pregnant and no one believing you. On top of it they’re suggesting lots of herbs and yoghurt or something. Wouldn’t that be weird? YES IT WOULD.

Anyway, I’m writing about this not because I face it in my own family, but because I’ve become so aware of the staggering amount of people who do. The emails I get and the stories left on the petition page are crushing, heartbreaking and keep me up at night sometimes. I’ve got insomnia anyway so, what gives? This isn’t about me, it’s about doubt, and the incredible amount of damage it has done to people’s lives. Vulnerable people who need help and encouragement, where they’re getting skepticism, judgment, and advice. This is why we have to get it right. And like 40 other reasons, but you feel me.

The nice part about the suitcase in my hallway is that I laundered the clothes before I came home, so they smell like Colorado! With a touch of Southwest Airline Zest. The advocacy has to come before the painting and the laundry and the bath I really would like to give Monty because he’s beginning to smell like a dog. I don’t have the energy for all of it at once, but I can do a little at a time. People have emailed to tell me the petition is a waste of time and won’t do any good. They might be right, but even if they are, it’s a little too easy to shout from the sidelines, isn’t it? Also, is that maybe a waste of time? We can at least say, if you’re not trying, your chance of changing anything at all is zero. And I sincerely don’t believe that. Maybe this project won’t work, but I don’t think it will hurt. So, I’m going to keep trying. If it doesn’t work, I’ll try something else.

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BONUS: We’ve surpassed 48,000 signatures on the petition. Boo Yah!

Unfortunately, it takes a very long time to scratch out all the personal information on over 300 prescription bottles. And since I’m sending the 2500 pages to Mr. Collins in this box with these “packing peanuts”, the process is taking longer than I thought. At least I can scratch out info on a bottle even from bed. I promise I’m working on it, and will deliver on what I said I’d do, which is to attempt a genuine disruption. Emails are a little too easy to delete. Tweets are easy to ignore, if they’re read at all. It doesn’t mean we stop those things, but I’m trying to think outside the box. Hardy har. This, I’m hoping, will take a moment of consideration before it’s thrown in a dumpster or lit on fire. Either one. That’s the hope, and at least when you’re trying, there is some hope to hang onto.

There are so many of us in the M.E. world looking for something to grab onto, particularly through those dark times of despair. I’m hoping to add at least one hand that will reach back when they are searching for a way out. We’re going to get there, so hang on.

Health, Happiness, and Catching Up

P.S. The petition has been gaining signatures and is now over 48,000. My reliable calculator says we have only 1,643 before reaching 50,000. I say we make that happen! If you haven’t yet, please sign and/or share the petition. Every name, story, comment helps. Thank you, all of you.

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Home Somewhere

Having the chance to travel anywhere is always a gift no matter how large a cluster it usually is, and I try to remind myself of this no matter where I go. The process of going anywhere can so often be grueling in just the exhaustive process of preparation before you even leave the ground. But I’m lucky I’m able to do it at all, so I pinch myself when I catch those curmudgeon-y thoughts pop up about the unconscionable sound of airport bathrooms and the logistical nightmare of planning around 7 different doctors. But you prepare well and you try to go with the flow and be grateful you’re making it out anywhere into the big chancy world. A change of place can do wanders. 

I’m back in my half-hometown of where most of my moms family lives and it’s always feels good to be back. Sometimes it feels like a dream that we ever lived here, like it was so incredibly long ago when it really wasn’t. It even smells the same, and I’m not being poetic. Grand Junction has a dessert flower, pre-rain, stony smell to it, recognizable as soon as you step foot off the plane. Like all smells it brings back a lot of memories, most of them good, rose-colored childhood memories. It’s also a reminder that even though the South always comes to mind when I think go that word, home, New Orleans in particular, having a huge family in one place feels rivals that same feeling. I’m here for my cousins wedding, a girl who’s diapers I really did used to change. As much as time can feel like it’s hardly moving at all, a wedding always does the trick. Hard to believe, fun to see, good to be back. 

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Here’s 1/20th of us, Attempt #37

The scenery is so different here and the weather is exceptionally preferable to that of Louisiana in the summer. I mostly mean that in the sense that the humidity factor lingers under 30% here, and going in the shade will actually dry you off if you were to break a sweat, and the nights—they do this thing where they cool down! Considerably. I’ve probably become a pansy since living in a tropical climate, but I actually require a sweatshirt at night. Ridiculous. 

I feel happy I was able to make this trip. Of course, I am a sucker, over-protective and absurd companion to Monty, so traveling without him actually means I miss and worry about him. It’s a dog, Mary. How many times I’ve heard that phrase! And it’s understandable; I admit to being obnoxious about the dog, but hey, we’ve been through 10 years of hard boiled life together, and that decade has been a roller coaster of triumph and tragedy that has challenged me more than any other time in my life. But all the while there’s been one constant, one love that’s stood by and treated life as though all of this were supposed to happen–as though nothing really happened at all. There’s a strong bond that this kind of constant forms, and Momo and I have it. Friends, boys, family, have all drifted in and out, because that’s just how life works, but the dog has been there every morning, sick or well, and every night at my feet or by the side of the bed.

The fact that he’s adjusted to my life changing the way it has, has always held an underlying encouragement for me, I think. Some contagious perseverance, that while circumstances change in big and small ways, there is still always a path back to your self, and it doesn’t have to revolve around anything external. Before getting sick, my thinking was more along the lines of the latter. I’m still learning how to do it of course, but at least I see it’s possible, and I’ve discovered myself in places I would never have thought to look before. Monty has adapted to all the ways I’ve changed, and so I take pages out of the Life and Times of Monty all the time. Dogs are so good for people, and Monty has been a huge gift of grace for me. Just loving him makes me happy. I know I won’t have him forever, but I’ll always have what this decade of he and I has brought to me. It’s a love and an experience that has actually become a part of me. It will always be there, and I hope I’ll always use what I’ve learned. From a dog. What I’m getting at is I miss my dog OK!? He’s in good hands though so what I am babbling on about? Jeesh.

Colorado. Right. It’s nice here. When you’re sitting on a bench outside and it’s a dry 75 degrees and you’re surrounded by mountains you think Wait, why don’t I live here again? I always wonder if my family will all end up back in Colorado some day, one by one. It’s not totally out of the realm of possibility. But there’s just some part of me that lives and breathes in the South, in all its ridiculousness and crappy weather and cock roaches the size of your hand, I find it easy to call home. I guess you can have multiple homes and they all live inside you instead of the other way around. 

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My grandma tells me how often her and my grandpa moved while raising my mom and her five siblings. She loved it. She always said it was adventure, they made new friends easily and by now in the later stage of her life, she has friends and family all over the country. She never sounds sadly nostalgic or mentions the awfulness of goodbyes when talking about leaving a place behind—which is where we differ. That idea scares me to a somewhat dumb degree. I don’t remember always being this way. I studied abroad for a semester in college, and it was the happiest time of my life. I get nostalgic about it a lot, but I should be more grateful than anything that I was able to do it at all. I’ll always have a little town in France I can tell stories about. Besancon—a somewhat unexceptional place, perfectly provincial and French with little English spoken. I loved it there. I was slightly afraid to go and yet I made some of my best friends within the first two weeks. I fell in love. I wrote and became more of who I’d always been but never completely let materialize. I learned how to be happy again after The Year the Universe Shit On My Family. It’s funny how just a change of place can change everything, and for me, that year, it really did. I’ll always hold those memories as if they were tangible items in a lockbox. Maybe one day I’ll go back, maybe I won’t. But maybe because those memories are so alive inside me, so much so that I dream of the place and the people all the time, that it doesn’t matter ultimately. In my own way, I’m still there. And it’s still here in me. I expect it will always be that way. 

Right now I’m writing from a house in Vail Colorado, at roughly 10,000 ft above sea level. In Grand Junction the altitude wasn’t an issue at all, but since we arrived here a few days ago, I can feel a marked difference. The air feels too thin to adequately inflate my lungs, making me perpetually catch and take a deep breath. It’s like there’s a good sized monkey sitting on my chest at all times. All that would be no big deal, but the dreaded weakness crept up the first morning here and hasn’t left since. I’ve been pushing it so maybe it was a crash just waiting to happen. But it feels more like an altitude thing. So I’ve surrendered to going out and doing things, which hasn’t been hard because the view from the house and seeing the wildlife (in the wild!) and spending time with family and has been more than enough and worth feeling like a useless limp noodle.

Every morning and night the deer come right up to the house to eat. Yesterday I saw a mom and her babes, a young buck and a doe. The buck was the last to leave, but first he looked straight up at me on the balcony and we stared at each other for what felt like forever. At the end of that long, quiet gaze, a sports car that looked like the bat mobile and was loud as a jet engine revved its gas as it drove down the mountain road not far below us. I swear the deer simultaneously rolled its eyes with me. I had this recurring thought of What a moron! as the sound of the bat mobile echoed off the canyon down the weaving road. I don’t even know why really, I guess because I hate noise. But I also couldn’t help thinking the young buck was thinking the same thing. Who knows, maybe he’s into sports car by now. 

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Goodbye lil Deer. It’s been real.

At any rate, it’s incredible to be in the middle of the wild. It’s too bad I’m a slow moving wet blanket taking up space and hogging all the oxygen. But the family doesn’t seem to mind, and the surrounding beauty makes up for any physical discomfort. Waking up to mountains is something that I’ll always hope is at least an intermittent part of my life. I think returning to sea level tomorrow, to the crushing heat and weighted humidity, I’ll take a big wet breath of air, maybe finally catch my breath, and I will definitely know I’m home. At least, at one home. 

Maybe for now, home is wherever Monty is.

Health, Happiness, Doe! A Deer. 

Airports.

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

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

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

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

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

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

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

Personally, I love flying.

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

Health, Happiness, Seats Forward and Tray Tables up

 

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

How To Come Home

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

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

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

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

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

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

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

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

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

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

Stay tuned.

Health, Happiness, Home.

The Plague.

I feel the need to begin here by expressing my deep gratitude for the response to my last post. As usual, my decision to publish a raw and somewhat sad update was not without hesitation on my part. My preference is always to write in a happy and funny and optimistic tone, even if the words I am writing are happier, funnier and more positive than I actually am. In some ways it’s therapeutic, and in others it’s a challenge in creativity and authenticity. As much as I’d like my writing to point towards the fun and the funny, life is not always that way, is it? Sometimes it’s overwhelming and can feel too heavy to bear. I resist putting words out there like that for maybe the same reason I never liked to cry in public or ask for help when I needed it. It means, gasp, I’m not perfect. And that’s what the ego fears a lot. 

Over these last few years, the pride that held tears back and forced a facade that was untrue began to crumble. This writing project entered the picture when those superficial layers were starting to shed, and consequently this blog has some really vulnerable things in it, which can leave me uneasy. At the same time, I can feel that my most honest posts are the ones that connect most with strangers. (Duh) And that doesn’t mean they have to be in the tone of “True Life: I’m Sick All the Time.” Humor can be just as much genuine and communal. It’s the one I prefer, it’s just not the one that always is.

Anyway, it’s a battle inwardly and materially, but I just really need to extend my thank you to everyone who received my words and reciprocated with such loving support and encouragement. How can we lose faith in humanity when across the world, people sit down at a desk to uplift and strengthen a stranger with words? It’s a two-way street yall! I’ve been reflecting on so many responses from people I will never know, and that alone is healing. On a form level, it makes me trust in the direction that the blog is taking–one I did not design. On the formless level, it had me feeling so much better despite being so sick. That transaction served such a greater purpose than “You should try eating more JuJu Beans!” And I attribute that to all of us. This doesn’t feel like a solitary project anymore. So thank you. That’s all I’m saying, THANK YA VERY MUCH.

Now, onto the plague. I’ve been puking my guts out. But that’s not the plague I’m talking about.

My siblings with their partners and children rented a beach house in the Florida Keys last week. It happened to be the same weekend as the wedding of a long-time good friend. For two months I went back and forth. Beach house or wedding weekend? (Assuming I could move) I could always go to the beach and fly home for Saturday night and make it to the wedding just in time for the festivities, right!? But with the way I’ve been feeling, my unsteady ability to sustain, my mom didn’t even have to tell me with her eyes this time. I knew I couldn’t do both. Or maybe I could, but the price would be big, and these days the price of choices like that are not just gargantuan but scarily long lasting. Crash days have turned into crash months, and the basic goal is, Don’t do things that could set you back so far. 

Back and forth I went, and it was tortuous. It always is; I do this all the time.  Both choices seemed correct and incorrect simultaneously. My indecisiveness is one of my largest sources of anxiety. I won’t get into the details of why one choice was better than another, there were many pros and cons to both. But often when it comes to my immediate family, they’re the default decision. I don’t get to see them a lot and they’re my lifesavers after all. They’re my blood bro! After my brother called me a few days before the trip, started describing the waves and the weather and a hammock outside, I booked the ticket and felt confident momentarily that now I didn’t have to suffer. The decision was made and now I could relax. I guess.

“Indecisive Girl” by Carli Ihde

…Until I saw my friend who’s wedding I would miss and then saw all my old friends who I rarely see that would be there. And all the shit they gave me, it was more torture. What have I done?! I blew it! At the same time the trip was booked- let it go. You get to hang with your family on the beach. That rocks. That’s true. I got to the beach. I held my nieces and laughed with family around the dinner table eating fish my brothers caught that day. And then on day 2, I awoke at 5 am and had that feeling in my gut that something wasn’t right. And then at 5:30 I started puking up all those “not rights” I was feeling.  I had caught the stomach bug that half of my family had experienced the week before. My sister was up with the baby conveniently and she held my hair and that was nice. An hour later with my face pressed against the cold tile in between cycles of puke bursts, I moaned and tossed: “Shoulda gone to the wedding. Shoulda gone to the wedding. BLLLLURGGGH”  (puke sound)

I’m still recovering from that evil stomach bug and it’s a bummer. But the bug isn’t the issue here and I know that. I’m the problem. Shit happens that you can’t foresee or plan for. Regret and hesitation are such hinderers of the present. And we all know that the present is where peace lies. Happy is in the here and now. A lot of my unhappiness, and perhaps unhappiness in general, is being here and wishing to be there. I could easily have gone to the wedding and convinced myself I was missing a beach trip of a lifetime. I could have tried to breakdance and broken my butt. (That almost happened once) So while I lie here sick on an air mattress, in the living room, on vacation, (once again) I’m trying simply to just be here. I’m looking for the lesson. I’m trying to focus and trust in the experience I’m having instead of the one I did not. Thoughts like that are like swimming up-current–they consume and exhaust me even more. It’s just another battle that’s no use fighting.

I don’t know how long I’ve been plagued with indecisiveness like this. Though I remember even in middle school spending far too long picking out deodorant at Target, never certain I would choose the right scent. It’s been a long time. As always the first step to breaking a habit is awareness–creating a space between the routine reaction and a healthier one. Maybe it starts with knowing myself more. Trusting myself more. But maybe it’s simpler than that. In stillness the answer points to this idea; be where you are. Wherever that is.

I be sick in Miami! And it’s fine! Whatever!

Here’s something Tolle says: If you resist what happens, you are at the mercy of what happens, and the world will determine your happiness and unhappiness. …To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally as good or bad, but to let it be.

Pretty good no? I’m marinading on that one. Ew, marinade. I’m still queazy.

Health, Happiness, Plagues.

Artwork: Indecisive Girl from Carli Ihde

The Paris Promise.

Have you ever promised yourself a gift? Something unnecessary, something perhaps even excessive, but something just for you, from you?

When I was 22, I left America to study a spring semester in France. I had always been drawn to Paris– the French, the language, the lifestyle–but I could never pinpoint why. I just felt I needed to go one day. I became so philosophical about wanting to go there and not understanding what was fueling my desire that finally I called my brother Nick in a strange self-induced panic. “I want to study a semester in France.” “Great!” he responded. “But I have no idea why!” A pause. “Who cares?”

It was my freshman year, and I often called Nick with my college-born troubles. I remember him telling me with such sincerity, “Mary, don’t think to hard about it. You want to study in France, so study in France! You’ll know why once you get there.” He was correct. Three and a half years and a crap-ton of paperwork later, I packed two ridiculously sized suitcases and prepared for life abroad.

Technically, the timing couldn’t have been worse. I felt very troubled leaving. It had been one of the hardest years of my mom and I’s life. Just less than a year earlier my step-dad died suddenly, and everything sort of stopped. None of us were prepared for that. As if that wasn’t hard enough, a few months later my black lab Brusky, who had just turned one year old, developed an infection and also died suddenly. Brusky was one of the only positive things my mom and I could count on that year. When things became intense or overwhelming or sad, he’d always do something to make us laugh. He was truly a wonderful dog. He was my sunshine. And when he died that morning, I really felt forgotten. There was an empty feeling of chaos inside. I watched the world spin on but I felt stuck standing still. I was jealous of happy people. I was doubtful for our future. And I was losing faith that we could ever be happy again. It was partially the reason I went to France. At that point it felt like I didn’t have a lot to lose.

But I was the last kid left in Louisiana. Most weekends I drove home from school to be with my mom. There are so many logistical things to tend to after someone dies. Just cancelling his cell phone with AT&T took months and months. My mom always told me to stay at school. That I didn’t need to come home and that she’d be fine. But when you see a parent lose someone they love, you see a piece of them go too. She’s tough, and she rarely reaches out for help. And that was mostly the reason I went– so she wouldn’t have to. When I received the acceptance letter to a university in a small town in France called Besançon, I was immediately excited and then immediately distraught. How could I leave my mom at such a pivotal time? She insisted I go. Insisted she’d be fine. The last thing she wanted was for Roger’s death to hinder us. I grappled with the idea of staying and the idea of going.  Finally it felt like I had to go. If I stopped exploring, learning, living, loving, trying, then I’d have let fear and doubt and melancholy take over. We had to keep living, both of us, and maybe while I was gone, something wonderful could happen to her too. It didn’t make our goodbye at the airport any less sad. I held it together as best as I could, but still I felt the fear and the doubt and sadness right there on the surface. We hugged goodbye and I prayed all the way to Paris. It was the only thing I could do to keep my confidence alive in a decision that I wasn’t outwardly sure about.

Once in France, my brothers words rang true. Meeting amazing people who are still incredibly close friends. Watching the first snow fall. Cafe au lait and croissants and vin chaud and ridiculous business hours and cafes and little French children. It was perfect. All of it. I fell in love. With the country, with a boy, with my friends, and my life there. “This is why,” I thought. I’d found my answer. Something in my soul must have known I’d find happiness there, at a time where I’d forgotten what happiness even looked like. I lived in a space maybe half the size of my bedroom now with a twin bed and a desk, and I have never been happier. Best of all, I felt vibrantly alive for the first time in a long time.

Happy, oui.
Happy, oui.

Not only that, but while I was gone, my mom said yes to a coffee date, with extreme hesitance.  A friend convinced her it was only coffee and so she went. The coffee date turned into a dinner date. Which turned into an every meal date, and falling in love and happily ever after. Would that have happened if I would’ve stayed? We’ll never know, but I’ll always wonder.

When leaving after an adventure like that, you make a lot of promises. You think you’ll go back. You think you’ll stay in touch with everyone. You’ll carry on traditions. But these are more optimistic than realistic. The real world resumes on when you return. (It’s awful!) Although I made two best friends there, one of which is My Stupid Friend Jess, very few of us stay in real touch. We reminisce. We get sad when we think about the fact that if we all went back now, it wouldn’t be the same. Our experience was wonderful, carefree, spontaneous– but impossible to repeat. It was five and a half months of not living in the real world as we know it. School was very easy, teachers were lax. They encouraged you to immerse yourself in any and everything, and if that meant missing class, pas de probleme! I loved it. It was truly perfect.

But I did make one promise that I have always intended to keep. I promised myself that I’d return to Paris and celebrate my 30th birthday there. I’ve thought about this promise throughout the years, and I think over the last two years I’d sort of lost hope and resorted to the idea that Paris wouldn’t happen. But when I turned 29 this year, that promise seemed to reignite inside me. I realized it’s only impossible if I say it is. I have a year to make this wish come true. I have no idea why I made the promise for my 30th birthday. I probably assumed I’d be wealthy and successful by then. Hahaha!!! Life is funny.

So I’m not exactly wealthy and successful (yet) but I still have 10 1/2 months until my 30th. A lot can happen in that amount of time. I know that work is required of me. I know there is a way for me to have this illness but still contribute in a meaningful way and support myself and Monty and pay back all the debts I’ve incurred along the way! I truly think it’s possible. I constantly see items on TV or in magazines and think ah, when I’m a millionaire, I’ll totally have a temperpedic mattress and my own jet for travel so I’m not subjected to modern commercial air travel. They are fantasies, sure, but something tells me they could really happen. It’s not like this type of success doesn’t exist. It’s not impossible! It’s just going to require getting creative. Most people don’t make millions from bed, but it’s not that far off the radar. I mean the Kardashians did it!

Anyway, I don’t have the money yet but I haven’t aggressively tried to get it. I’ll need to strategize. And maybe I won’t be in great health, and it will be different than last time and I won’t be able to walk the city as freely. But I’m going to turn 30 no matter what. Here or there. And if I’m sick here, why not be sick there? I don’t mind being sick in Paris! And if it’s just me, alone on a terrace, watching the Eiffel from afar, that’s great too. As long as I am choosing life, and honoring my passions and keeping my dreams alive and not stifled, I don’t think I can really go wrong. I don’t know how this is all going to fall in place, but somewhere deep, someplace where I once felt that initial drive to go and didn’t know why, I feel that it will happen. And if I keep letting the illness infringe on every dream, I’ll never get anywhere. Things will stay the same. And  once you stop dreaming, what is the point really? This was a promise I made to myself. Not for a boy, not to prove anything, just a gift I promised to my soul. Last time I left, it was a troubling time and I was uncertain, but once I arrived it all made sense. It appears to be that way again.

The only question left to ask? WHO’S WITH ME?!   :)

La Santé, Le Bonheur, et La Promesse

 

Love and Let Live.

I’ve neglected my writing routine for a solid few weeks and I attribute that solely to distraction. One particular thing. A person. It’s a person.

That person is Rob Lowe. Just kidding, it’s not Rob Lowe. But that’d be a funny anecdote wouldn’t it.

Unfortunately or fortunately, I have to be alone to write. (Duh) Very alone. And by that I don’t mean lonely, although it can get that way. But even someone in the next room, doing something else, watching some movie, talking on the phone–it all feels exponentially more important that I be a part of their experience in the other room, even if it is just watching Robinhood Men In Tights which for the record, I’ve seen. But someone being over there and me being over here smells something like missing out, and as a full-fledged youngest child, I’ve lived 29 years trying to avoid just that. I think all youngest children do.

I’ve been spending time with my unofficially official ex-boyfriend/boyfriend/best friend/comrade/casual dating kissing partner. And we spoon too. It’s all very simple. We’ve known each other ten years and been through a lot including tumultuous breakups and taking turns carrying one another. We’ve been through things that either harden you or strengthen you and somehow rounded out in the middle. It seems to me we’re on the same learning curve. It’s the only way I can explain how after so many ups and downs we still seem to find one another, each wiser from their mistakes, and seeing in each other something that has always been there. Of course maybe all this is way too analytical. Maybe simply he was my first love and I was his and some part of that just never goes away. Regardless, he went away this morning on an adventure. The kind people talk about but rarely actually embark on.

photo-79
Life in a Bag.

He packed his life in a green hiking backpack and is starting out in Nicaragua– and that is about as far as his plans go. One of his plans involves staying and working at a hostel near Leon, where he will lead expeditions to the top of a volcano and then get down by surfing down it. I remember I was eating yogurt in my pajamas, exhausted after doing something undoubtedly small and stupid, when he told me that plan. I laughed a little as I envisioned his day versus mine while taking another bite. “Our lives are so different.”

In that way he’s kind of my hero. For one thing, he’s been blessed with a body that works and he is using it to his advantage. Pushing it, training it, challenging it and paying very little. He is strong and coordinated and a fast learner. This is of course something I’ve been unable to keep up with him on. And that’s OK. I’m learning to be content from the passenger side. I’ve actually come to enjoy and take pleasure out of watching people do what they want and go on adventures and seek what makes them happy. You don’t need to be strong to do that. At a fundamental and simple level, this is where human beings can be very wonderful additions in each others lives. If we merely nudge our friends in the direction of happiness, we’ve at least done something.

It’s funny such a thrill-seeking adventurous soul would ever have any attraction to the sick bag of bones called me. I guess I wasn’t always this sick, but still, life with a chronically ill person can be slow-paced and sedentary and a downright pain in the ass. But I guess all of life isn’t a thrill. At the end of the day whether you surfed down a volcano or not, you need a good snuggle partner and I am a pretty DANK SPOONER YALL.

hehe
hehe

He doesn’t know how long he’ll be gone. At least six months, or until the money runs out. We made no real plan of contact or correspondence. I know that this is an adventure he’s going on truly with himself, and he should be free to explore everything along his path. No ties or obligations to the homeland. Clean slate. But on the way to the airport I felt myself squeezing his hand tighter than normal. I guess that’s to be expected when facing the unknown.

Then I had that all too-human experience of returning to a house after an airport-goodbye with that hush all over and the remnants of someone in all the rooms. It’s all a little quieter and things feel hollowed out; you know it’s the start of something new whether you wanted it or not. At the same time, my own adventure is beginning here. Now that I have my solitude back, I have to get to writing. And reading. And arts and crafts And following my own glimpses of joy. It may not lead me to volcano surfing but it could get me somewhere close. Like healing yoga or gluten-free breakfast cookies!

Anyway I never much write about my love life, or lack thereof, but it all feels sticky in my brain and I am hoping that by releasing this feeling I can continue on with other endeavors. I am happy for my friend who is following his bliss– and Gator if you’re reading, be careful out there! If you died out there I’d be really annoyed. I know I have to let go and I need not to lose myself in someone else’s tales. For a while there I was getting so caught up in his life I was forgetting to tend to my own. Marianne Williamson says most of our problems stem from forgetting who we are, and that rings so true to me now. Time to move onward. Time to live and let live.

Health, Happiness, Forward.

Snow, Christmas, Crash, Repeat.

I’ve attempted to sit down and write multiple times this week but my eyes continue to grow heavy and I fall asleep with the light of the monitor on my face and an incomplete sentence waiting. Most of the family left to their respective homes on Sunday and it appears my body waited for them to leave to go ahead and crash–which is nice of it actually. I made it through Christmas Eve and Day with adequate enough energy and I was really grateful for that. If being sick now is payment for what I experienced with family this Christmas, then it was well worth it. I just love those crazy animals!

Christmas is by far my favorite Holiday. The lights, the soundtrack, a reason to be kind, the eggnog, the food and the family. I treasure it all. Since we spent this Christmas in Colorado, I began praying weeks in advance for a White Christmas; something I haven’t had in many years. It just makes everything that much more “Christmasy.” When I awoke on Christmas Eve, I saw that my prayers were heard. We had every type of snow that day. In the morning it came down softly. By the afternoon it was big, slow flakes. On the way to Mass it was small gusty snow, fast and twirling. I felt like a kid again. And being that we’re Southerners who are rusty in the art of driving in snow, we went about 15 miles per hour on the way to Church, leaving an impromptu parade of backed up traffic behind us. But you can’t get mad about traffic on Christmas Eve– Not in your Sunday Best while the sky is falling. I received more than I asked for; 6 inches to be exact, which is pretty substantial for this town. It continued to snow into the night, revealing a very real White Christmas the next morning.  My favorite part was taking Monty on a walk that evening. The night sky orange from the clouds reflecting lights, the atmosphere hollowed; a padded cave where your steps crunching the snow is all you really hear. It almost demands that you stand still, that you look up. There is a tangible quietness to snow and it was a real gift to experience it again.

Monty in the Snow, Night.
Monty in the Snow, Night.
Yum.
Yum.

I also really like this time of year because there’s such a sense of hope and possibility with the New Year. On a technical basis, it’s minor. It’s just a change in numbers. A 2 becomes a 3. But for human beings, where space and time matter, it marks an end and a beginning. As the numerical date changes, it’s wise to reflect on the past 365 days and think of what you want the next 365 to look like. Of course, as the mystics would remind us, there is no past or future. A New Years Resolution can only begin and mean something right now. Right now is all there is.

I didn’t make a New Years Resolution specifically, though I love the idea. I reflected on New Years Eve 2010, which I spent at my parents house, and it was Monty who I kissed at midnight. The next few days would involve a heavy crash and a hospital visit and some major contemplation about what to do with my life that I was slowly losing control of to health. I remember that last New Years Eve I thought well, at least the worst year of my life is over. I thought 2011 would be my sickest year, and that I could stuff it far away somewhere. Bury it. Burn it. Just put it out of sight and move on. And then I met 2012. In many ways 2012 ended up being my toughest year. Health-wise it was one of the worst. Emotionally it drained me. Personally it humbled me. You’d think after years of being sick I’d have it all figured it out by now. But I’m still learning. Feeling my way through the dark parts to find meaning, treasuring the good days, and holding out hope that this won’t be my life forever. 2012 was deeply hard, but another way to look at it is this: I survived. I made it. It’s over, but I’m still here. Like Caroline Myss says, “As long as you’re still here, you’ve got purpose.” I may be sickley and often seemingly useless, but I am still here, and I do feel underneath my lifeless body that I still have a lot of work to do. And if most of it comes from bed, so be it.

There’s a few other lessons I’ve learned in 2012 that I’ll take with me into 2013 on my way. Wherever that is.

I’ve learned how to be a house guest: That most people consider themselves clean and organized, and that every person’s definition of those two traits are absolutely different. All in all, people appreciate when you make your bed, so do it whether your hosts do or not.

I’ve learned that old ladies don’t like dogs without leashes.

I’ve learned that violence is not the answer and instead of trying to punch a fly in the face you may benefit from pausing and reflecting instead.

I’ve learned that even if my body is worthless, my mind is not, and it’s still possible to achieve things from a couch, or a bed…in pajamas.

I’ve learned that even if they’re the right thing, breakups hurt. They’re hard. Sometimes it really is time that heals those wounds best.

I’ve learned that every person is fighting a battle. I used to never talk about my issues, or even write in the first person for that matter. Now I have a public blog with everything out on the table and a lot of I, I, I. But most people do not. They keep problems and pain inside, protecting a sore spot somewhere, which is important to remember when they’re flipping you off in traffic or cursing your name from across the street. We all have issues, and it’s all OK. In my darkest times I’ve found reassurance that no one is alone in their pain.

I’ve learned that the best doctor is Dr. Mom.

I’ve begun to learn to swallow my pride. To accept help with grace. To admit when I can’t do it on my own. And that there is much more freedom than pain in those moments. There is real ease in surrender.

I’ve learned that regardless of the question, the answer is protein.

And that out of all 25 pills, nothing makes me feel better than laughter. Mine and others. For real.

I’ll take all of these with me. Into the future, to a galaxy far far away. Or to whatever state I end up in next. I don’t know what 2013 has in store for me. So far, I’ve basically spent it in bed. But that’s OK too. Because regardless of what 2013 brings to the table, I promise to keep on laughing, to keep on joking, and to keep making fun of the tragedy that can be life. In almost every punch life throws, we can laugh or we can cry, and in my experience, it’s just way more fun to laugh at it all. In short, I’ll keep taking 25 pills and making lemonade…or something like that. Happy 2013 yall.

Health, Happiness, 2013

Dude. Solitude.

Sound the bells. I survived the Colorado Crash of 2012. I’m alive. Woohoo!

Yesterday I finally started feeling back to my normal sickley self, not my deadly sickley self. And it feels good to be able to be out of bed for more than an hour a day. That tends to wear on a girl…at least a little. I can’t believe what a disaster my Colorado vacation was. It’s funny I’m still referring to it as a vacation. That’s like taking someone to the DMV and calling it a date. It was really hard for me to enjoy my time there because I was in constant recovery, catch up, and crash mode and the cycle didn’t break the whole time I was there. I had to say no to things and miss out on things which I’m typically “OK” with but this time I felt real sadness and anger about it. I wanted to blame someone, I wanted a reason, I wanted to “talk to the manager” about this. I wanted it to be somebody’s fault and somebody to fix it. But, that’s not how it works. These are the things that teach us grace and surrender and sometimes getting the lesson is the most painful part. By the last night I had broken down in tears just exhausted from being exhausted and feeling like the Debbie of all Downers. This illness tends to turn its victims into high maintenance fun suckers when it’s at its worst, and nobody likes to be around that. By the end I was tired of who I was on that trip and what I required. But my brothers talked me through it and we decided that next vacation we take, we aren’t making an itinerary. We’re not overcommitting to engagements and we’ll try to just take each day as it comes. We’re going to try to effectively do nothing–something I’m pretty spectacular at and most people are still getting the hang of. I’m happy to teach my ways. I’m doing nothing right now!

 

As hard as the last two weeks have been, I feel like it is all starting to pay off because now I find myself in Paradise. My sisters in-laws left yesterday morning for a three-week trip to Africa. When they told me about their voyage months ago my first question was what they were going to do with Mikey–an enormous yellow lab and king of the household. When they threw around options I casually mentioned that Hey, I have nothing to do in August (or any month ever for that matter) and I could watch Mikey for them if they preferred he had a dogsitter. A few days later they took me up on the offer and even allowed me to bring Monty here too. So now, after all the exhaustion, noise, chaos, itineraries, plans and breaking of plans, I find myself in a beautiful California home with two loveable drooling teddy bears, and I could not feel more at peace having arrived. When I wake up in the morning, there is silence, and there is no itinerary to follow. DO YOU KNOW HOW GREAT THAT IS!?!?

 

Truthfully I have always treasured my solitude. If I were a Country Singer, I would write a song called “Solitude Has Always Been a Friend of Mine.” Anyway, it happens at least a few times a year that I require almost total isolation and dream of being locked up in a cabin somewhere and cut off for a little while. It’s like my souls version of food cravings. I have always enjoyed small endeavors on my own. Sometimes I like to eat at restaurants alone, or see movies or go to the bookstore. I love not having to keep up a conversation and going at my own pace, which is usually pretty slow. There isn’t anything so commonplace and exhausting to me as small talk. I have no patience or energy for idle conversations anymore. I don’t like having the “What’s new with you?” conversation. I don’t like to hear how your job is going or how your brothers band got a new drummer. And I don’t like to share news from my neck of the woods either–obviously because I don’t have any. “Yep, still sleeping on peoples couches. Well bye!” I realize this probably makes me sound like an old curmudgeon, and maybe I’m starting down that path at the ripe old age of 27, but there is something about those forced conversations that sometimes even the mere thought of them drains me. They just feel so inauthentic on both ends and since my time out of bed is so precious anyway, it’s hard for me to spend it on a conversation that we’re having to fulfill some duty–or because we feel like we should. This is why having a dog as a best friend works out great for me. No elevator talk.

I don’t care about your job.
Me either!

The other part is, while writing is my passion, it’s kind of  a lonely practice. You can’t do it well with people around. And you kind of have to “strike while the iron is hot” which is typically for me sometime around 3 in the morning. The act of writing is not nearly as satisfactory as the result, and many times the process is grueling. Anyway, the only living thing that can hang out but not disturb me is a dog. Two dogs even. So Monty and Mikey have been great companions. We eat, sleep, swim and write and there’s no itineraries or talking about our jobs. Wanda left me a note welcoming me to help myself to any and everything and to write a book while I’m here. Think I’ll take her advice.

Health, Happiness, Solitude.

Help and Thank You

It’s been almost 7 days and 12 hours that I’ve gone without internet and I am gently reminded just how much a product of the multi-tasking, turned-on tech generation I am. I think going this long without wi-fi is my generations equivalent to camping. I’m pretty sure they call this roughing it. And I’m pretty sure my parents would call me a pansy.

This is an easy problem to fix, as most public restaurants and coffee shops have free wi-fi these days but since I’ve basically spent the last seven days IN BED or using some other piece of furniture as though it is one, I haven’t been able to take my little coffee shop trips like I’d planned.

I’m not exactly sure what’s going on, but since the day after I arrived here, I’ve been crashing about an hour after I wake up. Apparently my adrenal glands aren’t functioning properly and I’m bottoming out after I wake up. And not just “Gee I’m sleepy I think I’ll lay down for a bit” kind of crash. (Since becoming sick I have no idea how a power nap works. I just know 15 minutes could never ever ever ever be enough when I’m in a crash.) It’s more like hitting a brick wall where the only thing to do is go back to bed. If that sounds depressing, well, yeah, it is a bit. But there is no such thing as faking it. I made it to dinner at my cousins Shawns house after three days in bed but didn’t feel like I could keep my head up to play cards after dinner. And we ALWAYS play cards after dinner. That’s what you do in Colorado. That’s what you do when grandma is around. And that was just one of many things I’ve had to miss out on since arriving, which is very challenging emotionally for me. I’m the youngest of four, so basically since birth it’s been my prerogative to just not miss out on anything. But that affect right there is one of the hardest parts of this illness, many times even harder than the physical pain itself.

A few nights ago after spending the last two days straight in bed, I felt like I started to lose my mental strength. My siblings had left to go visit with old family friends who I’d really like to have seen but I just couldn’t make it happen. When I’m sick like that I’ve always felt it’s best to be alone since I’m not a ton of fun to be around and basic “sounds” really bother me. But then after everyone left, I got sad and wanted them to come back again. All of my siblings are here and we have taken over my grandmas little house. My brother has been sleeping on an air mattress in the middle of the living room–and this has really worked out for me, because I basically get to be in bed while simultaneously hearing to the conversations and sounds and chaos that ensues when more than one Gelpi is in a room together.

The truth is, I find myself looking for an answer to all of this and there often isn’t one. There are a lot of questions I have about my life that most of the time I am able to let go unanswered. But during those times like a few nights ago, I can’t escape the questions so easily, and I feel anger about them because it simply doesn’t make sense to me. I was angry that most of my vacation has been spent lying down. Angry that I was missing out on my favorite activities. Jealous of other people’s health. Angry that I rarely get to see all my siblings at the same time, and now here we are all together but I can barely get out of bed. Marc Nepo says it’s our job to make sense out of our pain. So that is what I tried to do the other night as I did the only thing I promised I would do that day–take a bath. Big day for Mary!

During dark times like that, I don’t often have big revelations or hear the voice of God. I just let myself feel the pain and then remind myself that tomorrow is another day and say some prayers. There are two prayers I say when I’m all out of juice and all together they make up three words. And here they are: “Help” and “Thank You.” When I’m too tired to spell it out for the universe, (and let’s get real, I shouldn’t have to spell it out for the universe) those are the prayers I say, and honestly it feels like enough. The help prayer is for strength and the thank you prayer is for my family, particularly my siblings. They have taken phenomenal care of me since arriving, and my sister Amelie has been force feeding me protein every two hours. Even when I’m cranky and don’t feel like moving, talking, or eating. They bring me home leftovers and pick up my prescriptions and lie to me when I ask them if the party I missed out on was any fun. Each of them is an invaluable gift to me. Sometimes I think about my life and think maybe I’ll never get married. Maybe I won’t find “The One” or my soul mate or whatever they talk about on Sex and the City. And then I watch us at work together and it hits me that maybe I don’t need that. Sometimes my mom and siblings feel like all the soul mates I could need. (Monty too of course) That being said, I’m sure they’re all hoping that one day I’ll be able to sustain myself and won’t require an air mattress in the middle of their respective living room floors and I am hoping for that day too. But there is just a lot of love between us and often I feel like my glass is overflowing with the stuff that matters. And pain and exhaustion aside, that feels pretty good. At the end of the day, you ask yourself; do I have what I need? And I do. I have modern medicine and the smell of my grandmas house, 10 more minutes of free wi-fi and unconditional love and the answer is clear. Today was hard, but I had enough.

Health, Happiness, Enough.