Fuel to the Fire

It’s been so long since I’ve typed at a computer, I think my typing speed may have dropped to under 60 WPM. Dangit. I should probably quit writing everything by hand in notebooks, if I want the words to appear anywhere else but in a stack on my bookshelf, that is. Also my handwriting is pretty indecipherable so I guess it makes sense to stick to the computer. It’s just that writing by hand has always felt easier, more accessible and immediate. There’s something more rousing about putting actual pen to page. I hesitate less. My ‘thinking’ mind turns quieter, and the space that must open in order for the good writing to come through stays that way, without distraction. Especially when I’m scratching away with a really great pen. Right now it’s a black Pilot G-2 07. Sounds like a damned air o’plane, and I’d even describe it as a “smooth glider.”. So, I guess I’ll just be transcribing from page to machine for a while. I need an intern. Any takers? I will pay in doughnuts. Why is doughnuts spelled like that?

This last month has been filled with a few major milestones. Most of them aren’t mine, but in the absence of personal excitement, the achievements of those in my inner circle are close enough–plus it’s something to tell other people. Like someone will say Whats new Mary? And instead of saying Um, nothing. I say Not much, but my childhood best friend had a baby! See how that works?

My childhood best friend had a baby. For real! It’s still hard for me to wrap my head around it, not because she’s the first of my friends to start a family. But because we’ve just been friends for so long, since we were babies in fact. We still laugh at jokes from when we were five! Sometimes I feel so young around her–I guess the kid in me comes out. Now she has one! A beautiful, alert, amazing little daughter. It’s all very exciting. I’ve decided that I’d like her to call me “Ont Viv” (what Will called his aunt in the Fresh Prince of Bel-Aire) I find it fitting, and if she has half the sense of humor of her mom, she will appreciate the spirit of this name. Of course, just like a milestone birthday, this big thing happened, and yet it’s not that different. Kaitlin and I are still the laughing, weird, sister-friends we’ve always been, except now there is a tiny little girl sleeping in the corner while we talk. Funny how everything changes, but the middle stays the same. Welcome to the world Bernadette Jane! Love, Ont Viv.

My other best friend, Dr. Emils, got married a week later. I was a bridesmaid: score! A Southern girl and a guy from Amsterdam equaled a classic New Orleans wedding with a dash of Dutch. Nice. Two days of wedding festivities and a crawfish boil led up to the ceremony at sunset, on probably the best day of weather New Orleans has had all year. Everything was perfect and she made such a beaming, beautiful bride. It was a happy, lively experience to be a part of and filled with a lot of love. All topped off with a long second-line led by a classic Nola brass band singing all the greats, including When the Saints Go Marching In. Weddings are the best. No, New Orleans weddings are the best. If you ever get the chance, go! I’m really happy for my friend, mostly because I could tell how incredibly happy they were together.

I’m also the last single girl on the planet. Sweet.

Engaging in a two day wedding weekend is a rare chance for me to see old friends, to be around people my age, to have a reason to dress up–or get dressed at all, for that matter. It’s not often that I get to do things like this. Not often I get to be 32. My life consists of a lot of solitude, which I like, but it’s always nice to get a glimpse of life outside the farm. If anything I live more like a 90-year-old dog lady, so I try to soak up every moment of acting 32. It’s tricky too, because I know that participating in things like this are not without consequence. Acting my own age comes with a price tag, so every time I decide to do it, I’m making a silent agreement. No one really knows the gravity of decisions like this. Or what’s involved in just showing up, or how  I’ll pay for it all later. The choice is so much more encompassing than just deciding to attend a party. I swear I don’t write this out of some martyr, woe-is-me mentality. It just struck me as I was swiping through photos of the big day, which was a really fun day–that it makes perfect sense why so many people misunderstand the illness. They don’t know the weight and preparation and consequence of partaking in something normal, like being a bridesmaid in a wedding. How could they? All they see is this:

unnamed
I did.

They couldn’t know how much time and tedious planning went on beforehand, including scheduling when I would bathe, to ensure there’d be enough time for rest between that and the next event. They couldn’t feel the certain amount of pain you just have to bare through things like this. They don’t see the plethora of medicine necessary to endure standing and socializing and lasting through a night. And they’d probably never consider such things, like a bath, or socializing, as exertion in the first place–As something that counts against you in your fight to keep strain at an absolute minimum. And that is almost always the goal. It’s obnoxious even to me, as I write it now. The strange reality of living with this thing. The exhaustive necessities involved in even small things. You’re always calculating how much every little thing will cost you, always trying to save up if you’ve got somewhere to be. But what really struck me is that nobody sees what the pricetag actually looks like. That’s because the pricetag comes later. They don’t see the subsequent week or weeks of recovery that follows at home. Which can look a little like this…

waiting
Poor Monty

When I thought about the outward appearance of illness, the timeline of how it plays out, what I show to people when I’m out and what goes on at home–I realized not only how easy it would be to get the wrong idea about the disease, but also how I might play a part in misrepresenting its reality.

For one thing, I want to emphasize that the reason I am able to even show up and participate in a wedding is because I’m currently at a functional-enough level to pull it off. There is a spectrum to the disease, there is waxing and waning, and there have certainly been times throughout the last 6 years when I wouldn’t have been able to stand at the alter. Even so, being “functional-enough” still means tedious logistical preparation, and a two-week long crash as a result. So, I’m still miles from where I once was, or should be. But many others are bound to their homes, many are bound to their beds, and we are all suffering with the same disease. I realize that people may see me when I’m in public and just not “buy” that I could be sick. And I see why this misperception persists.

But I also think that often we assign too much power to labels, and we attach our personal version or image of what “sick” should look like, and those who don’t fit the bill are either doubted, ignored, or assumed sick “in their heads.” We should all consider the many forms that ‘sick’ takes, and acknowledge that even terminally or chronically sick people don’t look sick at all times. No one would’ve guessed my dad had cancer, and that guy was dying! Looks are deceiving, and this immediate tendency to mistrust what we don’t immediately see or understand results in a basic lack of humanity. I am probably at my most functional that I’ve been since 2012, but I still walk a very fine line. It can and does go south easily, and it still requires help from my parents, a lot of rest and recovery time, a ton of medicine and doctors, and a lot of supine time on my own. (With Monty) And I am a lucky one, for sure. I know that people who suffer with anxiety/depression, bipolar disorder, OCD, Lyme, MS, Lupus and other chronic diseases suffer with similar outer doubt and confusion because their illnesses are not always easily seen from the outside. Labels, symbols, projections; they’re all powerful things, and they’re something we should consider and adjust on the whole before we make up our minds about something we may know zilch about.

I think I feel the need to write about this because ever since I entered the world of MECFS advocacy last year, I came face-to-face with just how poorly understood the disease is, how much misinformation/pure fallacy is out there and dominating the conversation, and how many people are getting it wrong because of the name alone. (Another thing I understand, it’s a stupid stupid stupid name.) I also have to consider whether I am helping to change and fix these misperceptions or if I’m at all contributing to them; and if I am, what I can do to fix it. I thought a lot about that after the wedding while looking through such beautiful pictures from the day, from the confines of my bed, knowing I wouldn’t leave home for a while. I didn’t think critically about this before last year, but I’ve learned up-close how much these things matter. The problem of disbelief is so much larger than gossip or personal dramas. This is literally public opinion shaping policy. It’s allowing the lack of intervention on a disease affecting millions of our own and many millions more around the world. How long will we allow people to suffer? How long will we let the accountable people look the other way? The world is looking at us and our treatment of this disease, and we are totally blowing it.

As soon as we show serious interest, I know other countries will follow suit. I know we will also make important new discoveries and possible cures. For now, we are at a stalemate that is costing millions of lives and billions of dollars. It’s almost hard to believe it’s true or possible after so long. And yet, here we are…

In the last year there has been awesome and much needed support from the public. The many signatures on the petition was surprising and still continues to humble me. I should say, it was that petition with such a substantial amount of sigantures that scored me the local news spot, a meeting with the Louisiana State Director (whom I spoke with for more than two hours about mecfs) and the reason I had a follow-up with our Senator Bill Cassidy. There’s more on the horizon. I’ll write more of that later. But our fight to be recognized, pursued and funded for biomedical research has come closer than ever in the past year, and we have to keep up the momentum. To quote my mom, “The timing could not be worse.” Hah, she is right. Politically things are somewhat of a shit-storm right now, and the potential for a slashed NIH budget on the whole obviously doesn’t work in our favor. But with the recent diagnosis of my sister, the possibility of backtracking our earned success, I have a renewed fire to fight and faith in myself, the advocates, the public, and the system, and an unrelenting hope that we can and will fix this. The timing might be terrible, and yet the truth is, there’s no better time for change than right now.

There are so many people in the advocacy arena who are doing big things–as for me I will continue to campaign for awareness in all ways I can think of, and restart petitioning for signatures. But I think possibly the most powerful voice is that of the public– not from those who are sick, but from those simply who see the injustice that’s happening. That’s who we need to hear more from, and seeing the amount of healthy people who have signed the petition already restores my faith in people all over the world will come together and make this happen. Thank you all again. Here’s to the next 40,000…

Health, Happiness, Fire

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

The Cusp

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

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

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

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

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

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

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

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

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

V413782_RC093
Didn’t You Hear?!

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

Forward!
Forward!

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

Health, Happiness, the Edge.

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.

I Spy Something Monty

Think Where’s Waldo. Meets Dr. Seuss. Meets I Spy. Something Like That.

In the Bushes!
In Some Bushes
At the Beach!
At the beach!
On Some Stairs!
On Some Stairs
Fast Asleep
In the Ocean
In the Ocean
At the Park
At the Park
In the Light
In the Light
In the Dark
In the Dark
Waiting in Line
Waiting in Line
In a Ditch
In a Ditch
In the Bayou
Swimming the Bayou
smellingafish
Smelling a Fish!
On the Edge
On the Edge
In the Hedge
In a Hedge
In the Snow
In the Snow
WIth Eyes Aglow
With Eyes Aglow
In the Hills
In Creepy Hills :/
In Lake Ponchartrain
In Lake Ponchartrain
At the Table
At the Table
Playing a Game
Playing a Game!
In the Reflection
In the Reflection
Taking a Leak
Taking a Leak
In the Pond
In a Pond
Taking a Peak
Having a Peak

Health, Happiness, Monty the Great

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.
This.
And this.
And this.
This...
…This
Always this.
Always this.
Ending with 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!
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.
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!
Grandma Selfie Yeah!