A Good Show

There’s this really good show on Netflix called Michael, Tuesday and Thursdays and I can’t recommend it enough. If you want, you can stop reading there and go ahead and watch it. For any other reason, I’ll write a little more.

It’s been a particularly rough Saturday. I’ve cried hard twice, not to mention that crying gives me migraines. So once I finally get it under control, if I just so happen to make the very human error and have the audacity to cry twice in one day, I get the beautiful gift of two migraines. Cool!!!! Ah, that’s just self pity at work. I’ll ignore it if you will. The point is, I’ve had better Saturdays.

It probably doesn’t matter a lot why I was crying. Although, given the over-arching topic of this blog, I guess it does seem pertinent. Mostly it has to do with the exhaustive, skin-crawling, seemingly unattainable task of accurately describing this illness to other people—the people you care enough about to sit through all the expected questions, and probably a good three or four you haven’t heard before. It should be such an easy dialogue. A simple back and forth of mostly yes or no questions with neutral answers that would fulfill every facet of a humans curiosity. That’s how it should go.

For me, it rarely does go such a way. I can’t help but wonder, if the disease were different, would the discussion be different? And you can’t help but be me and hear an obvious, resounding, validating y e s as an answer. But that’s engaging a reality that doesn’t exist. And for the most part that rarely goes well for me.

I know

Another side of the coin to consider, is what it feels like to be relatively healthy, and be on the other side of a persons life with M.E.. A life that can so easily look the part of ordinary, but can’t produce the tangible value of a “normal” life. It’s not to say the other person sees it that way or doesn’t, but I’m trying to imagine my own personality, character, and basic psyche from before I was sick (another mostly impossible task, by the way). How would I feel about a person, “presenting” as I do? Maybe I would have no problem as seeing them as a product of their own choosing. Maybe I would see them as simply not trying hard enough. I would probably, which is how it goes most of the time, assume I had answers and capabilities that would keep “hypothetical me” from turning into this sick, human-wasteland “me.” It’s a common response, and I believe it’s actually a defense mechanism, by the way, not at all a mal-intended one.

In this circumstance, seeing someone who looks like you and mirrors your life in any number of ways, simply “succumb” to some disease that stripped them of nearly everything, you need an out. You need a reason why it could happen to me but not to you. I’m talking about livelihood, and the loss of it. What’s to keep you safe from knowing it couldn’t happen to you? The mind has its methods.

It makes sense. In thinking of my own mind and ego, I’m presuming that that wouldn’t be a too-far-off possibility of how might I react. I could naturally assume my will power would be stronger, my body would fight it off, I wouldn’t let myself sink that low to a state of non-productivity and lack of social interaction. Or perhaps, I might see it as a simple lapse in mental state—and I’d want to trust mine enough that I’d never let it be that vulnerable. These are all just chance reactions that I’m considering I could have—as well of course, reactions I’ve witnessed over and over and over again. In either case, the mental default of the person on the other side makes sense.

It does however, strain the sick person, to the fault of no one (except the NIH ahem ahem). Psychologically, it’s a struggle, which puts more pressure on the brain, and so usually means a poor physical response too. With M.E., emotional stresses are just as causal for a crash as exertional ones. So every time you’re having to re-explain something, or explain it from the beginning (which feels at times, impossible), it can come off as an ongoing battle that you’ll never quite win. It sounds like a blatantly negative attitude, but it’s because we know it’s impossible to convey an illness to a person, when that illness isn’t even well defined in a book. Or among researchers or doctors. Or google. If med school hardly touches it, where do we start?

We’re literally learning in real time how to live a meaningful life, when it can’t deduce meaning in all the conventional ways. That struggle is enough to make anyone…dare I say it, fatigued. But then to *feel* like you’re constantly having to convince people that you are in deed, trying is another struggle to join the mix. So at times, for me anyway, it can feel crazily overwhelming. And either rationally or irrationally, sad. A real hurt. I guess it could easily feel that way for the person who loves you on the other side, hating to have to watch this illness wreck a person in real time.

I probably fail to consider that side as much as it deserves.

From watching this show, I’ve realized a lot of people, particularly those struggling with depression and anxiety disorders, never arrive at the road called “Cured.” It’s one reason why they’re in therapy. Some can be cured, certainly. But some are simply learning to live and survive through the extreme discomforts they feel daily, hourly, moment to moment, whatever it is. And that is something so many of us within these blurrily defined categories of “lacking conventional health” share.

None of us have to try very hard before we feel alone floating on our individual islands. But there’s also the truth that we’re enduring these things, these lacks or voids, together. And it’s good to remember that, for whatever potentially sadistic reason. Maybe not in an “Oh others are in pain too, thank God” kind of way. But that we’re all up against certain things, and our collective seeing them through to the other side, brings us closer together in a human sense. At least the possibility of it exists there.

The more one person defies their mental or physical limits, the more likely for another to do it, and so on and so on. It’s not about beating the disease, but finding a path where not everything in life feels predetermined by it.

Maybe that’s the hushed solidarity we feel in sometimes hearing about the hardship of someone else. Maybe it’s a quiet, subtle reminder, that in each of our respective battles we’re individually aginst, we’re not alone. And that reminder, it seems, can never be bad.

In any case, I’m speaking in specifics and generalities. The specifics are why I cried, but the generalities are the bigger take away. This will always be hard for me. It may be for a lot of people. But the best I know is that by continuing to talk about, explain, and defend mecfs if you have to, the closer we will come to a time where we won’t have to. I wish we could be there now, but there’s no speeding up society with one press of a button. It’s up to all of us now. Keep talking. Keep listening. Don’t be afraid.

Yay!

Last thing: The song introducing the show is so good. I’ve put it here now so you can plug your earphones in and listen. It’s worth it.

Health, Happiness, Another Wild Saturday Night

A Little Older Now

A little while ago I was haphazardly complaining that I couldn’t believe how old, number-wise, I was. I didn’t really feel older. I still feel like an idiot kid figuring it out litrally (said with accent) every day. My cousin Brenda piped in with something that should have been obvious. “We’re all getting older Mary. You’re not suddenly older than us!”

What a self-evident, seemingly obvious take on things. I had it somehow in my mind that only I was getting older, while everyone else stayed the same age. She was right, we were all looking the same, while somehow kids were growing and seasons continued to change and evidence of time past surrounded us wherever we looked. I guess that’s all to say, It’s been a while. I’ve missed you. How’s things?

I had no idea how to re-enter this little world I created so long ago and then took a sudden hiatus from for what, two years? Was I doing other important things? You could say that. (I wasn’t.) I was just living, plain and simple. The way people in picture frames and advertisements live. In some sacred moment— without a history of the last 10 years. No memory of being consumed by illness. Nothing lost. All I could ever need, I have. I’m just a smiling girl in a picture, no past—inhabiting ‘the eternal present’ as Tolle calls it. I erase it all.

The taking. Of friendships, relationships, autonomy and money and time. The leaking. Into every corner of my foolish little life. The waiting. In line at the pharmacy. In the first room at the doctor. The exam room at the doctor. On hold with the pharmacy. On hold with the insurance. On hold with the doctors office. And the loss, naturally. The loss of self to something I thought stronger than me. Of livelihood. Of growing into something impressive. Of opportunity. Of ways to make a mother proud.

There had to be a reconciliation with all of all that. And in truth, I might say that every day is exactly that. An eternal letting go, surrendering to what was and is real, all the while continuing to move forward. Embracing what is real and true by the ever changing second. Not to grieve the same things twice. In order for Life to overcome loss. To give what used to be taken. To have gratitude while I wait, because hey, at least I’m able to be here in the supermarket and wait on two feet. Not for long before it hurts, but I am somewhere. I am not a living couch.

This all points to my life now and how things have changed. When I look back at the move to Colorado, I see just how much of an insane shit show it was. We left with high hopes that Rocky Mountain air and crisp clear Colorado water could do nothing but help me. I’d have to feel better here, right? Wrong. It’s all too hilarious that I moved back into my childhood home, but moved into the basement. (It’s a finished walk-out OK!?) Every 36-year-olds dream. I did my best.

Looking back now from a stage of much higher functionality and a new, certain “availability” of health, I see how bad it was. My memory fills with images of me crawling up the stairs to the kitchen, on four legs like a monkey, because I was too weak to walk on two feet. Dizzily stumbling to the bathroom every morning, squinting in pain. Clothes all over the floor and Monty’s chew toys, because there was no energy in me available to do unnecessary things. Multiple Zooms with multiple doctors—zero real answers or treatments. A constant shortness of breath. A darkness under the eyes.

I rarely, ever left the house. People thought it was because of Covid. For me it was just life. For so many with chronic illness, quarantine was simply life as they already knew it. Covid was nothing but an interesting reminder that other people were also at home on a Tuesday afternoon. (Plus a whole lot more. We’ll get there.)

The truth is, I am very, very lucky. I write that with a strong knowing that it’s not even fair, what I’ve been given, because it’s what everyone should be given: a knowing, caring doctor. An MECFS specialist who treats exactly and only that. Proper healthcare. I can hardly convey how stark the contrast—visiting 6 different doctors in New Orleans to address eight different issues and dispense twenty medications, compared to one, bright, excessively knowledgable doctor, in charge of all my medicine, who knows so much more than me about this disease—which, it should be said, is how it should be. The patient shouldn’t have to wonder if the doctor has ever heard of her disease, let alone whether she says its name out loud. That is, if she even mentions it out loud at all. It’s always a gamble. Tell them or don’t tell them? Don’t. Unless they say it first.

Imagine. This will be a time in history, one day, when we look back and say “It was a gamble to even say out loud the name of your disease in the presence of a doctor. It meant they likely wouldn’t believe you. Which meant they couldn’t or wouldn’t help you. Which meant, well, here’s the number to a therapist, in the end. One day in the future, we will look back at this reality in awe. Shock. Shame.

With a lot of luck, but mostly hard work and some gambling on the part of my sister, she was able to arrange an appointment with Dr. Yellman, of the Bateman Horne Center in Salt Lake City. It’s only four hours from here, so even when I have to go, it’s a beautiful drive. I think most ME patients would be eager, health-willing, to drive for days to see this kind of doctor. Like I said, I’m lucky as hell that I got in, and I am far from the most deserving. I’m constantly grateful to have him on board and also a bit woefully heartbroken that so many sick people don’t have this access. To those I say, please hang in there. We will get there. There’s work to do. There’s so much work to do. But we can do it.

I should perhaps clarify that no, I am nowhere near perfect health. What changed is that my specialist is treating all kinds of things that a regular PC doc wouldn’t. Medicine like Cromolyn for Mast Cell Activation Syndrome, Pyrodistigmine for POTS, electrolytes and compression leggings for all parts dysautonomia. (That last bit is the easiest change you can make right now. I’ll post the leggings I use. That and at least one liquid IV a day.)

I still crash. Push and crash as though I haven’t learned this lesson a thousand times. But my crashes are less extreme, and a lot less long. This last month reminded me I am very very far from invincible, and it still doesn’t take so much for me to overdo it. I still need to be cautious with myself, but it’s difficult when I feel energy not to want to run outside and jump on the roof of my Toyota Camry and, I don’t know, sing Taylor Swift at the top of my lungs. Why? Because I can is all. That’s it really.

There is plenty more to say, about everything. We’ve got two years to account for! But mostly, I’m still me.

I hate to say it, don’t know how to say it, except to say it. I finally lost Monty, which I came close to thinking would never really happen. It was exactly a year ago next weekend. I’ve so much still to write about it, and him, and the whole thing. But the most I can say for now is that yes, it was very hard. But I realized that my fear of losing him was actually worse than the loss itself. When the time comes, you know. When you’re close with another soul like that, you know. Monty chose when and where, and I was simply there to pet his velvet ears and take in his smell one last time. OK, so I’m crying now. That happens sometimes and it’s OK. I think how wasteful all that fear of losing him was, when he was panting directly in my face!

Dogs are incredible teachers. Monty was next-level, and what he gave to me, in nearly every category of life, was precious. I really cannot believe how lucky I was to have such a dog as my own. It was a gift and a privilege to have him. I will never forget it.

It’s been a crazy two years. But I’m still here. Still Surviving. And Monty? Well, he’ll live forever ;)

Love You Buddy

Health, Happiness, Hellos & Goodbyes

Exshoes Me?

Someone explain to me why these shoes exist.

Why are they 400 dollars.

Why are they award winning.

Why is 300 dollars considered on sale. But they’re on sale you guys! SALE! 

I’ve got a lot more writing to do, and mindfulness to be mindful of and reading of things that warrant being read. But all I can think about is these loud pom pom shoes (their words not mine.) I keep picturing if a clown/magician hybrid was at a birthday party and said “Hey, wanna see what kind of footwear I can produce, merely by farting?” THESE would be the shoes. And they’re not even that bad. In fact, they’re kind of funny. And I appreciate a sense of humor in fashion. Not to mention, in the marketplace of women’s footwear, (namebrand anyway) $400 is almost nothing, which is insane in its own right.

But these aren’t Louboutins or any of those other fancy hard-to-pronouce brands that warrant their price by brand alone and also merely sounding expensive. This is just the world we live in. Why can’t I get them out of my mind? That red color? They’re not that bad. Could I actually like these shoes? And then not like myself because I actually like these shoes? No. This is getting too existential and there are wars going on. This never happened.

BUT FOUR HUNDRED DOLLARS FOR CLOWN BUTT EXPLOSION SHOES? OK stopping. I’m now thinking it’s possible I might like the shoes. Also, I made this blog about shoes a long time ago with an oppressive amount of indoor time on my hands. I never released it into the wild because it’s not actually ready or done or whatever. But I guess now is as good a time as any. I’ll work on it. It’s called Is This A Shoe? Inspired by an ad for something that I think was supposed to be a shoe but I truly could not distinguish if this was something to wear on your foot or a childs toy from Ikea. (See second shoe from the bottom) Attributed also to the amount of inside time you have when you’re sick and in bed and have run out of cracks to stare at crawling along the ceiling. Click to see shoe blog. 

Oh yeah, and now some vastly more important matters before I go. Good God I should be ashamed of myself. This should be at the top. Anyway, pay attention:

Unrest the documentary is on Netflix, so you ain’t even gotta pay. Just watch it. You know you were just gonna watch The Office or Parks and Rec again, or feel sad that Stranger Things is over for a depressingly long time, so do yourself a favor and watch a really good, real life, movie. If you don’t have an account, email me, I’ll give you my password so you can watch.

SIGN/SHARE the petition. I abandoned it a while. It was a sickly and bad year, yada yada yada. Lots of excuses. But if I can advocate other’s work, why am I not advocating this one? It’s dumb, I’m dumb sometimes. So please, just know the petition is still UP AND RUNNING, and yesterday, we hit 44,000 signatures!! Still really, really incredible it’s acquired those kinds of numbers. All the more ways to DISRUPT and get the world to see. Power in numbers. Yada yada, you know all this. It would be really sweet to get to 50,000 by Spring, and then one million by summer, don’t ya think? Me too. I think we can do it. So let’s do it.

Until next time I come across something banal and obvious that I don’t understand…

Health, Happiness, Fight On

My Super Duper Serious Farewell Video to 2017

I worked super cereally hard on this video you guys! I’m seriously cereal! Sorry, link was broken before– youtube couldn’t handle the serious complexity of this super serious farewell video.

 

Here’s a picture of a rain dropped sloth, because, why not?

Health, Happiness, and 2018 Bring. It. On. Like Donkey Kong. Yeah I said it.

***Artwork of sloth, plus so much other great art, by Sonia Kretschmar, and you can look and enjoy all of it! Here or soniak.com. Keep goin Sonia, your art makes me happy.

Getting Clean

I really, really need to bathe. Let’s start there.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you  have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that  when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think.  And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

Health, Happiness, Hygiene

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.

 

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.

You Don’t Have to Understand It (I Don’t)

About a month ago, my dad appeared at the doorway to my bedroom. He was smiling like usual, wearing his favorite striped terry-cloth robe. It’s still hanging in my closet. I was happy to see him; I’d been struggling with something and whether it was with words or a hug, his presence is always a help to me. He entered the room quietly and sat on the edge of my bed. I began speaking and started to cry. The grin he was wearing didn’t waver at all, he he waited and listened with total attentiveness, the kind you rarely find. His calm demeanor and ease despite my tears comforted me, as though he knew something that I could not. When I paused he said “Be strong Mary,” like some kind of Indian warrior, but less warrior-like. He continued to smile as he spoke and reminded me, “You want to make sure you’re loved for the right reasons.” This felt like both a question and an answer. It sounds a little vague, but I could feel distinctly that I was heard and he understood me. His words were minimal but powerful; they gave me what I needed. I felt lucky to have him. Then, it was over.

The brash sunlight in my bedroom bursted in through my blinking eyes as I left one world and awoke firmly in this one. It’s bizarre but it usually happens the same way: In the first moments of consciousness, the dream plays out in its entirety in reverse, in maybe one or two seconds. But this recollection doesn’t seem to happen in my mind. It’s as though it comes from the center; my gut or chest. Then, it arrives in non sequitur bits and pieces and my mind immediately begins to reassemble them in order. In those first moments of wakefulness, the experience feels so entirely tangible and fresh, so within reach, I’m convinced if I close my eyes tight enough it will all come back to me. But most of the time there’s no going back. While the dream itself is sacred, there is something Holy in waking from it too. I have felt God there. It’s as though dreams give access into the eternal, and in those first blinking moments, the human mind hasn’t caught up yet. In this little pocket is where we can sit with the phenomenal before our thoughts flood in and diminish it into something digestible; something that makes sense.

The dream visit is like the Cadillac of post-death interaction. It’s a chance to see and hear and feel someone that you don’t have physical access to anymore. I feel extremely grateful when I have dreams with my dad. Beyond the refresher for my senses, there is power in them. I was given advice and comforted yes, but I felt actual love through that dream. I drew strength from it and I’ll treasure it among the other great memories I have of my dad. And that had me thinking. I’m always hearing people say that dreams “aren’t real” or shouldn’t be examined because they’re just imagination or a meaningless summation of random events and mostly just aren’t true. Of course, this has roots in pragmatism. A dream that your best friend is living in your refridgerator doesn’t mean that they are, hopefully. But I’ve been thinking a lot lately of dreams I’ve had with my dad, especially this most recent one. I’ve been recalling it, as though it were a real memory. And I’ve been trying to discern what the difference is between an actual conversation like this and the one we had in my dream. Didn’t it really happen? Isn’t it now a real memory? When you read the first paragraph, did you have reason to think it wasn’t real? It did happen. Not in our dimension but in some dimension. However unorthodox, there is still meaningful interaction between us. I don’t pretend to understand how it all works, but I know it is true. It feels as real as a phone call with my brother last week, or the heat of the sun burning on my neck.

Two weeks ago, we celebrated his 67th birthday. We always cook his favorite meal and group-text photos of the food like a bunch of nerds. We caption them with the funny things and phrases he always said. It’s happy. It’s a chance to remember him and hear his stories and the awesome things he did or the weird songs he sang on his guitar. It’s all an opportunity not just to celebrate but to know him better, which I’m perpetually trying to do. For a long time I didn’t allow that to happen. Since I didn’t truly grieve him until college, I entered my twenties still knowing and remembering him as my 12-year-old self. There was a chunk of time when I shied away from talking or hearing about him, afraid it would make me cry which I hated to do in front of other people. It pained me to see other people cry over him too. Grief was something I had to learn, it didn’t come naturally. And whether I had cut myself off intentionally or was just too young to process it all, I had also cut myself off from getting to know him further. I unknowingly stunted our relationship, which I assumed was something that couldn’t grow once he was gone anyway. I was wrong, as it were, and so occasions and stories were just reminders he was gone.

It wasn’t until after facing and enduring the big parts of grief that things changed in a big way. I could finally begin to know my dad as my older self, not as a 12-year-old. I began understanding and appreciating him in new ways, and my love for him grew. It was then that our relationship began to evolve past sentiment and allowed for interaction. He existed as more than just memory, which was so fulfilling in my life. I found myself looking forward to any occasion regarding my dad. I love(d) to hear peoples stories about him and the wide open way he loved and lived. New stories and photographs all offer another glimpse into his life and who he was. I’m still putting the pieces together. Even the stories I’d heard before took on new meaning, because unsurprisingly, you process a story or memory much differently as an adult. I allowed other peoples sadness and I allowed my own because I knew it meant we loved him well, and that was in itself a comfort. A connection. All of it, including the dream, reminded me that he was still my dad and some part of him wasn’t gone, he or it was still there somewhere, maybe in that pocket between life and the dream.

I know that enduring the pain of losing him and reaching out to him again as though he could still hear me is what opened up our “line” where things like the dream happen. But truthfully the contact is not always so blatant.  Most of the time I have to look in the minute, the subtle, in things that are easy to dismiss. And I find him there. In heart shaped leaves. In a fly that won’t leave. In being so unconditionally loved and taken in by my family, including my stepdad, who my mom says my dad helped arrange. I find him in my nieces and seeing my brothers as fathers. In the morning. In rain. He loved the rain and was always reminding us that it was a sign of balance. Since his death he has continually shown up to special occasions with rain, if even a two minute shower. It’s raining now.

Getting to know my dad so many years after his death is a surprisingly positive and treasured experience for me. It’s been a privilege, really. Death is mostly talked about in hushed tones and at the risk of sounding morbid, which I’ve been accused of once or twice. But my dad has made death feel less serious, somehow.  When someone dies we label it as “bad” and when someone young dies we call it unfair. And while losing someone you love is one the hardest experiences in life, grief is not stagnant. Nothing stays the same, including the pain. And when you endure it, you also open the door for incredible things to happen. You’re brought intimately close to the lifecycle and there’s a sacredness there too. I don’t think it’s over when it’s over. I also don’t think people die and stick around to play with light switches. But I do think the line of communication is still there. It just involves reaching for it and experiencing someone using a new kind of language. It means being open to things you don’t completely understand.

I’ve always been aggressively curious and sometimes the weight of life and the worlds mysteries become too heavy and I get discouraged. Even mad sometimes. But getting to know my dad after his death and developing our relationship and talking with him while he sits on the edge of my bed…it superseded the comprehensible a while ago. It left me with far more questions. It’s made me an implicit part of something I don’t fully understand and for that I am so grateful. Because that’s most of life, anyway. We don’t actually know why we’re here or what happens to us when we’re not, but we go after it and love people and try to have a good time anyway. Knowing him has been a humble reminder that life and love and the infinite universe unfold despite our human comprehension. It reminds me that we don’t always need the answers in order to experience the fullness of life. Sometimes we get so caught up with thought, intent on answers and knowing that we limit ourselves from the phenomenal. Some things are beyond the realm of understanding, beyond words and category, and these are all but reasons not to embrace and cherish them as the miraculous treasures they turn out to be. I am looking forward to more. The rain has stopped now.

Happy Birthday to my Dad: THE ORIGINAL HIPSTER

This post is many weeks late. Chronic tardiness was my beloved dads only vice and he passed that on to me. So I’m sorry dad, but also I blame you. -Love, Rudy

Health, Happiness, Happy Birthday!

The Cusp

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

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

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

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

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

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

Guess we’re going South. Cool.

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

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

Didn’t You Hear?!

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

Forward!

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

Health, Happiness, the Edge.

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.

Can’t Touch That

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

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

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

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

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

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

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

Good Morning!

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

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

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

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

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

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

Health, Happiness, and Ultra Clean Closets

Thirty Year Old Girl.

Next Sunday, I will turn thirty years old.

I have no idea what this means really, only that it feels sort of big and at least a little disconcerting. Sometimes I get nervous thinking about it and when I hear the countdown clock ticking, I feel like I’m about to make some commitment I’m not ready for–like I’m marrying into adulthood and I’ve got cold feet. Other times, like yesterday while jamming to Kanye in my car, I think Dude, whatever. Thirty is just a number, and when I wake up on Monday nothing will have really changed.

My disoriented feelings about turning 30 are hard to articulate, but when I came across this artwork by Rafael Verona I thought dude, that’s how I feel.

Just a twenty nine-year-old in the red snowy jungle of life, hanging off branches and…Oh God nevermind.

Anyway, this belief that ‘I don’t really feel thirty’ resurfaces in my mind again and again–looking in the mirror, playing hide and seek with my dog, or while playing Taylor Swift songs loudly on guitar, alone in my living room. But I’m thinking now that sentiment is more an excuse, a denial maybe, of what I’m entering in to. How do I know what 30 feels like? I’ve never been 30 before. Here I am, a week shy of it, and so it follows that for me and my life, this is what 30 feels like. It’s only off because what I anticipated about 30 when I was younger and dumber is far off from the experience I am having now. There’s a lot of ways for a person to be thirty years old, and one is no more essentially 30 than the other.

Maybe it feels off-putting too because I’m growing up in the American culture of avoiding looking our age, of never growing old. This sort of ethos is the basis, I think, behind these campaigns I’m always confronting that say “50 is the new 40” and “30 is new the 20” and there’s no reason we should look like we’re getting older, even though we’re all getting older. Americans, more than other cultures it seems, don’t like the idea of growing old. And so assigning a lesser number to our actual age promotes this mentality that we’re only as old as we look (or feel). And looking less than our age is not difficult to do. We’re surrounded by options, like facelifts and chin implants and chemical peels that burn all our skin off! Not to mention the newer business of Supplemental Testosterone, which is geared toward aging men and is a $2 billion dollar industry now. Even I, feeling angst at the number 30, am trying to excuse it by reassuring myself that I don’t look thirty, as if that really means anything. It’s pretty stupid.

I should be happy to be one year older. I should be especially happy to have survived and officially move past my twenties. A lot of them were exceptionally fun, but there were a lot of mistakes and pain too, often the result of being young and not knowing better. I know that the more I understand and know myself, the easier my life becomes. When I reflect on some of the hardest parts of my life, they were often during periods that I didn’t understand or had forgotten who I was, and being lost like that causes its own type of pain. As cheesy as it sounds, every year I grow older has meant a year of knowing myself better. And being in touch with who I am means understanding my strengths, recognizing my purpose more clearly, and grasping the meaning of my small life in the context of a larger whole. Carving out where and how I fit into reality is one sure way to feel happy and fulfilled. And every birthday means I get a little closer.

….

….

….

ON THE OTHER HAND I’M STILL KIND OF FREAKING OUT AND BITING MY CUTICLES A LOT AND I FEEL SORTOF CONFUSED LIKE IS MY YOUTH OVER? AND DO I HAVE TO REFER TO MYSELF AS A WOMAN NOW OR CAN I STILL BE MARY THE ‘GIRL’? IS THIS WHERE THINGS BEGIN OR IS IT ALL DOWNHILL FROM HERE? ANY ADVICE IS APPRECIATED I’LL JUST BE HERE TALKING TO MY DOG. THANKS.

Health, Happiness, Thirty.

(Ew)

One Month and the Buzz

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

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

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

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

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

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

No Pets

…

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

Damn you, Laken

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

Damn you again Laken

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

6 am, alive and well

Health, Happiness, Buzzing

The Opposite of Boredom

A few noteworthy things of late.

I’m completely lost in Walker Percy’s The Moviegoer. I began reading it Sunday and now I find myself attempting to read only small bits at a time because I’m already dreading it being over. It’s such a good read. The protagonist Jack really resonates with me but also Percy is such a creative and dead-on writer of things large and small. I admit reading his words make me feel like I could never write anything of worth if I tried for it my entire life. But on other pages his complex ideas play out so simply, his writing so accessible that it gives the assuring impression that anyone could do it. The story takes place in New Orleans mostly, among other Louisiana Parishes and the Mississippi coast. I love stories set here, not for reasons of pride but for how perfectly the landscape plays into the story, picking up where plot leaves off. Something huge would inevitably be lost were it to be told from Ohio…or Michigan. All parts of it from the dress, to the houses, to the unnerving racial tension are all intrinsically Southern, and you find yourself loving it whether you hate it or not. Also of note, Percy lived in Covington. He used to drive the bridge to New Orleans. I guess it’s encouraging to know something so inspiring came out of this little town that for so long I hated. Speaking of the bridge..

I had another moment of coherence. This time around mile marker 11. Monty and I were driving home once again, New Orleans to the Northshore, last Monday evening. It was a pretty nondescript Monday, cloudless with little traffic. But my thoughts were floating through me with the rhythm of the bumps per usual. Then I did this thing which I do a lot. A small amount of congested traffic formed from some kind of road repair, and as I slowed my car to a near-halt, I felt myself bracing for impact. Not from me but from a car behind. (No car in particular, I do this no matter who’s behind me) Then I imagined the loud crashing sound it would make and my airbags inflating. Then the last part which is usually the most unnerving for me, I saw my car crashing through the concrete barrier to my right,  and my feeble Toyota corolla with Monty and me inside it, falling slow motion into the water. Down, down we’d go.

Like this. But less black and whiteness.

And usually the thought doesn’t end with a rescue. Usually it ends with me shuttering at the idea of the lights going out on my life so fast, and then me being jerked back to reality, convincing myself someway that death is nothing to think about. As though I’ll never die! But last Monday was different. I had the thought, I braced for impact, I saw the vision of my falling car. And then out of nowhere…tranquility. My mind felt placid. I may have even smiled. I thought how weightless that moment must be when you finally let go. The grand transition. Finally releasing something you’ve held so tightly onto, whether it was good to you or not. The surrender. The relief! It finally occurred to me that only being lost so deeply in the world garners that sort of fear about death. If we could interview those who have “passed on” (as I hear older religious folk say) I think they’d say it wasn’t that scary. Nothing compared to the rest of their life on earth scared to death imagining it! I’d love to get just one interview. It’s like I know all these dead people and none of them will give me the dirt.

Anyway, I can’t explain how reassuring that moment was on the bridge. I remember in California over a year ago, I was sicker than I’d ever been to the point I actually thought I might be dying. And I hated the idea. I was so overwhelmed by that possibility that often it brought me to tears and I’d have to excuse myself and physically catch my breath. In theory it should have been almost a relief to think about–an end to suffering. But I didn’t want to die. And I certainly didn’t want my last days on earth to be like the ones I was having there. Closed up indoors, lifeless, feeling very alone. It’s just interesting to me that now that I’ve really been living these last few months, and dare I say it, even–happy–my fear of death has lessened. I’ve enjoyed the park and the pool with Monty in the sun. I’ve gone to dinner parties. I’ve said yes to things that in my sick past were a big fat no. I’ve spent quality time with people I love, not doing a whole lot of anything at all but talking about life and people and laughing really, really hard. And there on the bridge, for maybe no more than a second, I didn’t fear death. I felt curious and interested. But I wasn’t tense bracing for impact. I was smiling at how much fun I’ve been having and how at ease with life I feel. You’d think that would make the idea of death more unnerving than ever, because it means an end to happy times. But the opposite occurred. From my perspective over the water, death was just another thing that happens. Maybe after all, it’s not that big a deal? Hah. That moment was the first I’ve had that it didn’t feel like this overwhelming weight baring that comes with the knowledge that one day we’re all going to die. And even though my normal angst about it has at least half returned, that moment has really stuck and it feels readily accessible still. There was something very casual about it, which made me trust it even more. Sometimes I find myself looking for grand answers, spectacles, formal explanations of life and existence..and this was not really that. It was a simple and tranquil instant of acceptance, and those are the moments that persist. I pet Monty’s velvet ears, turned up the music and into the distance we drove. That indistinct Monday turned out to be quite the evening as it were.

Besides my newfound excitement for death! (jk)… the Day Lily’s are back in bloom. I looked at all the colors sprouting up yesterday, noting that by nature’s calendar I’ve officially been in this house for one year. I remember writing about these flowers last year, excited for how life in the pool house might unfold. Funny I hardly remember what’s happened in the time since then. In some way the fact that nothing terrible stands out makes it safe to say it’s been a pretty decent year. I only know that being given the gift of “relative health” the last few months has truly been remarkable for me. I’ve been enjoying the hell out of so many moments– of friends and boys and late nights immensely–and I feel gratefulness overflowing in me. I don’t remember the last time I was bored. I’ve read and written and played Taylor Swift on my guitar ridiculously loud. When I’m sick I rest. When I have energy I go. But most notably is this gratitude and the awareness of this gratitude. It occurred to me recently that this is the opposite of boredom. When I feel gratitude I feel like I’m living with my eyes open. I’m often noticing things that were already there that I’d simply skipped over before. I like this feeling of being in touch with my aliveness, seeing the realm of possibility beyond personal limits, recognizing the awe-inspiring nature of everything alive. Maybe it’s why I love saving the frogs from the pool, or why I don’t get rid of the spider living in the corner of my bathroom. I don’t think you can be in tune to these truths and be also bored. Boredom uses a narrow vision, it sees life as something to happen for us and not from us. Even yesterday, which turned out to be a crash day spent in bed, I lost myself in the enjoyment of a book, completely grateful for the existence of novels and good authors. Then completely grateful for a nice house to read them in. I never got out of my pajamas or brushed my teeth. I didn’t exactly contribute to the world. And all the same, it was really a wonderful day. I know there was a recent time in my life when I wouldn’t have thought that to be so.

Health, Happiness, Opposites.

 

 

Time and Space Jam.

Look at me, up at 6 am again. I’ll stop pointing this out soon as I realize this is how most of the world does it and it’s not a very special anecdote. It’s just that after two years of intense night life where my room light is on and the world is dark, I’m only used to seeing sunsets at the tail end of a bender, not at the beginning of a day. Truly I like them both, but there’s something a little less lonely about being awake during the day time, fitting into the pulse of conventional circadian rhythms. I’m awake because my burning legs woke me up. When my eyes opened there remained the haze of a dream where I understood time not linearly but in every direction; not just forward and backward but up and down, and naturally my brain almost exploded. As I looked through my junk drawer of pills, I tried to recall it perfectly, which of course I could not do. I could only remember it in some internal way, not with my mind but with something else. Some other part of our bodies that makes sense out of things. Of course trying to remember a dream where time isn’t linear in a cosmos where time is understood linearly is a contradiction. I can only vaguely remember that I glimpsed its possibility. But there’s something comforting about even the memory, because if it was possible in a dream, how could it not be possible? All of time is conceptual, so I’m feeling assured by the unfamiliar but certain memory of it. It reminded me of something I read in Tolle’s The Power of Now: “The inner equivalent of time is presence, awareness of the eternal Now.” That phrase The eternal now is exactly how I perceived time in the dream. It makes sense that the eternal now would flow in every direction.

I know that as the day proceeds, my mom will be right and the dream will fade like cotton candy. But in my room where it’s still dark from early morning, I feel it, and something about it makes me glimpse more possibility. I wish I could revisit it. As if it were an actual place I toured. But Inception is just a movie and Leonardo DiCaprio is just a man. What? Anyway before the crumbling of conventional time dream, I was watching otters swim in a very wide, muddy river. And we all know what THAT means. I’ll have to have a dream sesh with my mom later. Totes.

Beyond time/space dreams, I’ve been listening to a lot of Lorde lately. Like a lot. Like all Lorde all the time. I shared my obsession with the Pure Heroine album with a friend and now he binge listens to a lot of Lorde too. And sometimes we call each other and try to have some normal conversation like we haven’t been listening to Lorde for hours and watching videos of her and reading about her on Wikipedia. “Hey what’s up?” “Nothing whats up?” “Nothing.” “You’re listening to Lorde again aren’t you?” “Only for the last 6 hours, you?” Only all night last night, but anyway.” It’s addicting. It’s really hard to believe she’s seventeen and that when she produced this album she had just only turned 16. My friend says he feels pervy sometimes because she’s so young. But her voice sounds so incredibly loaded with experience; like she’s been through some shit that extends far beyond high school. Maybe this is what sets apart true artists, or what we call prodigies. They’ve got this ability to tap into time and experience in a different way. They can access the past, the vastness, the depth of all our existence. It seems to have little to do with time or age. Maybe they’re mining into that slow breathing, collective consciousness underneath all humanity. I imagine it’s how Mozart was composing sophisticated music by age 5 and Beethoven was orchestrating his most famous work after he went deaf. They were tapping into something deep and alive that isn’t usually accessible by most. Maybe it’s not so much that they were proactively seeking this “dimension” or energy, but rather that they were allowing it to move through them. Anyone who’s found themselves practicing their passion in a pure form can attest to feeling a powerful energy moving through and guiding their hand. Maybe that’s what Flannery O’Connor meant when she said “I write to discover what I know.” The best part of it all is that their finished products give the rest of us vision into that intangible force, which is maybe the best part, the real appeal of art in the first place. It’s a connection among separateness.

It bothers me that I do this, but I’ll probably continue to listen to this album until the sound of it makes me sick, because that’s what I do. Listen over and over and over until I can hardly stomach it. Because that’s my approach to finding music I like and it’s stupid but I don’t feel I can help it. Go me. Anyway since I’ve broached time and space and all that, I’ll share a passage from The Power of Now that I have underlined and that gives me some peace when I read it. It reminds me of the dream among other things, and mostly I just like it a lot. Here goes.

Go out on a clear night and look up at the sky. The thousands of stars you can see with the naked eye are no more than an infini-tesimal fraction of what is there. Over 100 billion galaxies can already be detected with the most powerful telescopes, each galaxy an “island universe” with billions of stars. Yet what is even more awe-inspiring is the infinity of space itself, the depth and stillness that allows all of that magnificence to be. ..What appears to us as space in our universe perceived through the mind and the senses is the Unmanifested itself, externalized. ..The greatest miracle is this: that stillness and vastness that enables the universe to be, is not just out there in space–it is also within you. When you are utterly and totally present, you encounter it as the still inner space of no-mind. Within you, it is vast in-depth, not in extension. Spacial extension is ultimately a misperception of infinite depth–an attribute of the one transcendental reality.

What you perceive externally as space and time are ultimately illusory, but they contain a core of truth. There are the two essential attribute of God, infinity and eternity, perceived as if they had an external existence outside you. ..You are here to enable the divine purpose of the universe to unfold. That is how important you are.

Letting that one marinate.

Health, Happiness, Space.

 

The “M5” Globular Star Cluster of 100,00 stars, about 25,000 light years away

 

 

Jumping Off.

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

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

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

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

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

Health, Happiness, Walking On, Jumping Off.

Colby’s Apartment

Questions Answered.

Everything is weird. I’m still healthy. And that makes things weird. And also pretty great.

I’m enjoying the three-dimensionality of things. The multitudes of personalities I’m confronting. The sounds that one simply doesn’t here in a bed in Southern Louisiana. Everything is distinctly colorful. Of course the onslaught of spring and the prolific products of hers help. It’s a been a long time since my health has maintained in this way. I’m walking a thin internal line, trying not to delve too hard into the why but not altogether ignoring the possibility of its fleeting nature, just like the season. I’m simultaneously happy at this new disposition and also keeping a dark fear at bay. It could all end quickly– a few things. And being entirely reckless hasn’t served me in the past. So I’m keeping these things in mind of course. But trying not to fall down completely into the rabbit hole where incessant introspective thoughts about it all could trap you just as easy as any sickness could.

For the most part, it’s been fucking great. Sorry. F word only every now and then. But it really is nice being able to stand and walk without the typical interruptions and be social and see comedy and do what other young people are doing. I can’t deny I am simply just enjoying the hell out of all of it. Things feel carefree and almost weightless. Life outside of a window at my house, a window on my phone, is really pretty great. When I get worried about the future or have fear of losing it, my mom tells me the same thing; detach from the outcome. And it’s so, so true.

I’m thinking of so many things these days. I’m still trying to put it together. What purpose will I serve with this newfound health? What did I fulfill in sickness? How to matter and find meaning in all of it– the big stuff and the little stuff and the small bits in-between. I’ve been thinking in questions today. I’m going to write them out with my best shot at answers because it’s just the current of my thoughts lately and I’m not going to swim upstream.

What do you contribute the newfound health to?

It could be the physical therapy for my neck which has lessened that pain load considerably. Could be the prescription switch to Trazadone that has me actually sleeping through the night–never mind the night sweats. Another prescription switch from Neurontin to Lyrica seems to help with pain management in general and maybe the increase in energy. Also it’s Spring and I swear to God I’m always at least a little improved in nice weather and my migraines are less frequent. Also divine intervention. I don’t know. Maybe a little of it all.

What happened to sewing, weren’t you into sewing for a while?

Yeah, I was. And I got really excited about some sewing projects. I sat at the Singer Simple 3116 for hours and taught myself the ins and outs of it. I got carried away and excited with ideas. Then I began, and I jammed the bobbin. THAT DAMN BOBBIN. I took the bobbin apart, unjammed it, and put it back together. And now the bobbin is failing me hardcore. I need bobbin help. Anyone? Still, I’d like to get back to some sewing projects. I find it relaxing and I like learning skills that seem to be fading from my generation.

What’s Monty up to?

You know, same ol…

This.

And this.

…This

Always this.

Followed by this.

Let’s talk about tea now.

Drinking this new acai/blueberry/pomegranate mix on the reg. It’s really good. Has there yet been a decision on the universal pronunciation of acai berry? I hear a mix around town. Let a sister know.

How’s the writing going?

I find a lot of reasons not to, but when I sit down and do it I like what comes out. Most of it’s been happening pen-to-page so I’ve been using up my notebooks, which is good because I have a lot. I’ve been on the lookout for a typewriter, but maybe that’s just another fantasy in the works. This thought that some instrument will encourage more writing instead of the truth which is that real writing just requires sitting down and doing that shit. I’m working on that.

Anything else while you’re out here in Neverland typing to yourself?

Yeah I’m reading like 4 books right now and 1 book of poetry. I don’t think this is how optimal reading was designed, but I find my head a little scattered lately. I’m almost finished with The Rosie Project–really funny, really good. Trying to push through Dance Dance Dance (slower than expected). One Dead in Attic is an easy quick read but dismal of course, you know, post-Katrina stuff. The Four Agreements is sometimes rudimentary in comparison to Tolle and Zukav and Nepo, but almost identical in the message. It’s got good stuff. New American Poetry which is proving what I feared–that I don’t really understand how to read poetry. Do you keep reading until you get it? I guess that’s all in the way of books.

And everything else.

For now the goal is to truly enjoy this time of health, appreciating every second where taking a deep breath is easy and sitting isn’t my only option. I’ve held the door for people these last few weeks. I held the door! These very normal things…they’re feeling very good. Clearly I’ve had a lot of doors held for me in my small life, and it feels nice to return the favor.

One last thing:

I saw The Grand Budapest Hotel. I really liked it. Monsieur Gustave..he sticks with you. I’m still stuck on Moonrise Kingdom though. See them both. Make a whole night of it.

Health, Happiness, HEALTH, HAPPINESS!

 

 

Push the Boys Into the Ditch; My Grandma’s Perfect Love Advice.

Do you ever go through something that is both presumably necessary but incredibly hard and subsequently feel the weight of the world baring down on you as if the gravitational pull changed and it was all on account of you doing something possibly stupid but possibly necessary? Me either, life is easy and fun!

While my health has to continued to sustain for reasons I can’t entirely know for sure, I’ve had some personal experiences which are difficult and painful and every time these things wash over me I examine why life has to be hard (as if I actually expected it to only be easy) and then I wonder does life actually have to be this hard or am I just doing it wrong?  I don’t know the answer to that one. I guess we can only learn as we go. I find myself telling Monty to never fall in love because it leaves a mark on every part of your life and ultimately it changes you, whether you wanted to or not. But then I watched the neighbor dog humping his owners leg and considered that obviously the alternative isn’t so much more grand. Though there’s an appeal to that leg–it’s not going to keep you up at night with heartache and strife. Or maybe I’m too quickly assuming here, maybe I should ask the dog.

Yeeeeah Legs!

Of course this fantasy that life would be easier and less painful without this or that is just that: a fantasy, a slight rejection of reality. But maybe more detrimentally, it presumes that somehow as humans we know better, and we know the answer to what would make life easier or more tolerable. As if life isn’t some ridiculous, complex mystery that has an infinite amount of working parts we as finite humans can only momentarily grasp, if ever at all. And I’m not struggling with an idea that every human for thousands of years hasn’t experienced pain from and questioned the value of. We’ve all been through it. Wondered if the pain in the end was worth the utopia in the beginning. I like this quote about it: “Love is the voice under all silences, the hope which has no opposite in fear.” by e.e. cummings. Would I really choose an option where falling in love wasn’t part of the equation? Duh, no. That’d be insane and cowardly and boring. Love is a remarkable gift, with perhaps its best quality being that of illumination. I like how sometimes it picks us, even when we’ve turned our backs on it or given up on the idea. I like that it takes us places we wouldn’t go on our own. I like that it makes even a worn-down curmudgeon feel giddy and silly and do things he thought he’d never do. I’m thinking of my grandma now, who at 86, has a man named Harold (a few years her senior) who is madly in love with her. I saw it with my own eyes. They would marry if only she’d accept.

Harold had been living at her facility for a few years when she moved in. He has a military haircut I imagine he’s had for 50 years. He speaks concisely and says what he means. There is density to both his physique and his words but a subtle softness you pick up on behind it. Harold had been sitting at the same table in the cafeteria for years, often alone, seeming annoyed by even the thought of socializing and especially at watching others partake in it. Sometimes he looks like he wants to press mute or fast forward on the whole charade; a sentiment I’m familiar with. He eats and drinks the same thing at his meals every day in a very particular order–part of the routine involving peeling his fruit and sharing half of it with my grandma. The ending involves hot tea with a lemon at a very high temperature that if not fulfilled, as sometimes happens with new employees or forgetful old ones, gets sent back. He waits. Sometimes he scoffs, others he sits in silence. I ate with them a few times last summer and couldn’t help but think of Jack Nicholson ala As Good As It Gets, with a little less show but just as much intensity.

Harold would be the last guy you’d expect to get all doughy-eyed and follow a girl around like a love-sick puppy. And yet, here he is. Three years in to my grandma’s stay at The Atrium, Grand Junction’s finest assisted living home, and Harold has fallen over in love with her. I’d like to say I’m exaggerating for literary purpose but truly I am not. I saw it with my own eyes. It started as a joke in the family– OOooooh Grandma! Hanging out with Harold again?! Grandma has a boyfriend! Hehehehe! And then slowly it was revealed to all of us that for him it wasn’t some crush, he’d truly fallen for her. He switched tables to sit with her. Even thought that meant there’d be a certain amount of socializing. He comes over all the time to watch Westerns at her apartment. He on the couch, she on the recliner. Of course half the time they fall asleep 10 minutes in, but no matter. The man has it bad. And something about it completely excites and inspires me. It turned the tables on rules I had stupidly self-made on love and life and age. Very stupidly. I am constantly discovering how much I don’t know. But I love this story. I love that the employees there asked my grandma what she had done to Harold. What happened to the old crotchety man rolling his eyes in the corner? Now he was partaking in group activities? Calling her on the phone? Feeding the ducks? Switching tables?!! While my grandma tries to insist they’re only friends, (oh my God life never changes) and that she finished that phase of her life after my grandpa died, it’s clear she’s enjoying the time with him as she should.  Albeit rejecting his proposals and insisting he partake in more bridge games. I love it all. They’re is something truly hopeful in all of it. Anything that flips our predefined notions on their head can only be a good. It’s illuminating. I imagine it’s that way for Harold, too.

Harold, My Grandma, and her best friend Myrtle, playing cards on a wild Friday night last summer.

Maybe it’s different for her. She clearly likes him being her friend and enjoys the companionship. Perhaps in this last stage of their lives, my grandma’s old stoic German ways will prevail and she’ll reject the romantic advances and they truly will be just friends. At 90. And that’s fine too. Of course I’m secretly hoping that one day she’ll weaken, she’ll let him sneak a kiss. Maybe she already has. I don’t know. But watching this all unfold fills my heart up with something good. Something hopeful. My grandma’s advice to me has always been that boys like girls who are mean to them; that she hardly ever let a boy get too close or too much from her. To work on your own life and don’t design it around some boy. And I knew as a young woman she had a lot of interested suitors and broke her share of hearts. In fact she pushed her first boyfriend into a ditch when he tried to kiss her, which she said of course, only made him try harder. And that’s been her advice to me; to push the boys into the ditch and watch what happens. Honestly I take her advice to heart. I love listening to her old stories. Her simplicity about life. She is a very happy person who loves her life, and so for me her advice carries a lot of water. I know they don’t have the internet at the Atrium, but Grandma, if you’re reading, give Harold a kiss for me. (I mean you can’t push the man into the ditch–he’s 90!!) For whatever reason watching the two of you, and specifically him, has been a very good thing for me, and I’ll probably always carry it with me.

Health, Happiness, and Boys In the Ditch

Grandma Selfie Yeah!

Don’t Forget to Do Nothing.

Two things happen when I start feeling better: My house gets really, down-to-the-baseboards clean, and my writing takes a hiatus.

For whatever reason, the last two weeks have been comparatively healthy ones. My energy is up and my pain level medium and manageable. Like most people with the illness, I couldn’t tell you exactly what’s changed. And if the past is any indicator, I could just as easily land on my ass tomorrow and be in a bed for a week. Of course, I’m not expecting that, and I’m enjoying the hell out of the newfound energy. My mom says it’s obvious when you start feeling better because suddenly you see all these little things that need tending too that you hadn’t noticed before. I’m sure it’s a defense mechanism of the body. You can’t exactly worry about dusty baseboards when your arms are too weak for teeth-brushing.

As I’ve enjoyed this accelerated momentum and stamina, I noticed I was forgetting to write. It’s easy to see why–often the trigger for me to write is either some sort of pain (physical or mental) that leads to enlightenment or offers some lesson, or it’s diverted attention to some very small detail that I usually notice when the pace of my life is slow, ie when I’m sick. It’s not that the requirement for noticing these deeper observations is sickness, it’s that when I am in fact sick, everything slows down. Out of necessity, I don’t really have a choice. The tasks on a to-do list, the chores, the logistics of physical life are put on hold while whatever broken part of me is on the mend. When I’m in this state, it’s almost as if some parts of my brain are turned up while others turn down. Like the static and noise of everyday life are quieted, and in that absence come the more powerful details and ideas. In other words, I’m tuned in to a different frequency. I’m looking for and sometimes finding answers and meaning maybe because it’s a way to feel alive and happy while waiting on my physical body to “catch up”. But I’ve discovered something in the last two weeks that now I’ll be paying attention to:

I shouldn’t have to be sick in order to be tuned in to that frequency.

The modern world is fast. The to-do lists are bottomless. And even when we die there will be unread emails in our in-boxes. This is why that conscious awareness I have while I am sick, the kind that the mystics speak of,  will have to be a choice on my part. (If I am to be well) If the last three years have shown me anything, it’s been the importance of that tuned in consciousness. Of living my life awake, not numbed or on autopilot. These things are easy to forget. Hell, I’ve been healthy a week and half and seemed to have forgotten just as quickly. But it certainly makes me examine the thought that all sick people have– could this be the reason I was sick at all? It’s not a theory anymore, I know with absolute certainty that without illness me and my life would be very, very different. I was a type-A personality; A competitive gymnast to whom school and other things came easy. Would I have ever slowed down? Would I ever have found Wisdom in the Day Lillies or saved the all those baby frogs from the pool everyday while examining the largeness and smallness of life that surrounds me? Would I stop to photograph plants like this just because it struck me as beautiful and that was reason enough for pause?

The Pink!

Well, probably not. And it’s not to say that me noticing the beauty of flowers or the fragility of life is so important or better than what I’d be doing otherwise. But I have to trust in the specific experience I’m having. Things could have been different, but of course, we can’t re-write our pasts. I’ll never know who I would’ve been. On bad days (on unconscious moments)  I fantasize that I would have been better. That my life would be a glamorous one and there would be little suffering and I would be the president blah blah blah. But that kind of thinking is mostly ego of course, and all fantasy. Projecting that all my happiness lies somewhere over there, if only things were different is textbook ego. And all that contributes to is a lack of attention to the present. It takes away my power and ability to see and navigate where I am with what I have. If our power is in the present and it’s indeed all we have like Tolle and his peers suggest, then the “if only” thought doesn’t get us very far. It’s rare that we stop to consider that without illness or without our painful experience, we might have been someone worse. Someone very unlike who we are today. Now when I consider why maybe this illness is a part of my path, it makes a little more sense. It’s what I needed to become awake. And clearly I’m still trying to get there.

Of course maybe you’re a student of the chaos theory, in which case all of this is just randomness unraveling in a one-time deal called life on earth. Some people are sick and other people aren’t. Life is good or life is bad and then you die.  I’ve considered this hypothesis but it just doesn’t work for me. It doesn’t further my vision or deepen my understanding of life and its complexity. In fact it seems to cut off at the very best part–the why. That’s a question I wonder if I’ll ever stop asking. Most of this experience only begins to make sense when I get down to details like a scientist would, and so that’s where my understanding is. Or where it begins. I am still searching for more answers, for more mentors and schools of thought to point me toward them. But I find it hard to accept a conclusion that appears to stop at the tip of the iceberg in terms of depth and understanding of all the elements of life that we cannot see. Love. Suffering. Belief. Surrender. Grief. Grace. Of course maybe I’m wrong in which case we’re all going to die anyway and I’ll never see you again. So, ya know, whateva.

There was only one day in the last week where I felt bad enough to spend the afternoon horizontal. As I write that I’m containing my excitement at how “good” I’ve felt that only one day this week I was on supine. Anyway, that morning I’d caught the eye of a tree frog on my kitchen door. For whatever reason I watched him a while and then took a picture. On my downtime that afternoon I kept thinking of that frog and the surplus of details on his little tiny body. So I wrote- a poem- for the next two hours. I don’t know whether it was good or not and maybe that doesn’t matter. But I do know for whatever reason, it had me feeling good to write it. I noticed then too, I’ve got to slow down. Even when I feel good, let some tasks lie. Let some calls go unanswered. Sit in stillness and quiet and let the questions come. Even if for ten minutes, I always feel better. Lately I’ve caught myself stuck on the guide channel of my TV, incessantly searching for a show that I feel will entertain or gratify me. I play one show in the window but continue to seek the magic program, while ads about Lipitor blare at unconscionable volumes. Suddenly, I’ll hit the power button, and the subsequent silence feels so. incredibly. good. That was the program I was looking for; silence! Life is noisy, and fast, and always non-stop. Sometimes it’s OK to stop and do nothing. Notice what happens in the stillness. It’s as if a whole other world exists right beyond the busy.

Health, Happiness, and Something Beyond the Nothing.

details.

 

Word of the Day.

Keepin It Real.

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