Boots On the Ground 

Well yall, I made it. 

I made it to Washington DC for our big advocacy day on the hill tomorrow. I made it through the last 6 weeks which were all kinds of difficult for all kinds of reasons. I made out with a guy, like high school style. Life is crazy! But I made it. 

I will get into the last six weeks another time, but it feels more important to document what’s happening now– which is that a sick little Gelpi made her way to D.C. to play with the big boys. I can barely keep my eyes open writing this, but I’m ready. Anything, everything– I am finally where the magic happens and I know I need to make this a high impact and memorable trip–for them, not me. 

Tomorrow is a big day. I can’t believe I’m in D.C. If you would’ve caught a glimpse of what was happening two hours before my flight was set to go, all odds would fall in favor of “Yeah there’s no way she’s making that flight.” Long story–another time. But here I am. And the process of arriving was not made any easier by my body, that reliable piece of shiznit, which fought me pretty hard the whole time I tried to make this happen. There was serious contemplation on backing out, and considering I bought the ticket to come here yesterday, this all happened fast, and felt like it could unravel just as quickly. But I knew, the way you seldom but with pure certainty know you have to do something– even if you don’t know exactly what that thing is, you just know you need to be there. Show up. Something in me knew I needed to show up — even if it resulted in nothing tangible or in “successful Numbers.” I needed to see and talk  to our politicians as the humans they are and not the dopes I see portrayed on tv. It’s easy to lose faith in our system, especially given the media coverage of Washington and the shitshow that it is. But I need to believe in all of this, because I know deep down there are actually good people out there– out here– working really hard to make things happen. These are the people we need on our team. 

Despite Social media bringing public figures “closer” to us, and in some ways more accessible, there’s still a disconnect that just can’t be filled in except for that good ol fashioned thing known as actually talking to someone. I think I’m all tweeted out, as far as tweeting at strangers asking them to care about something they mostly don’t care about is concerned. So it’s already somewhat of a victory: just being in the battlefield, and seeing the whole system at work. Double checking they aren’t robots– that kind of stuff. 

Getting here was a last minute near disaster. I was that last person jerkoff to board the airplane, out of breath from running. Then …I apologetically made the entire airplane smell like bengay because it was the only thing helping with my head and face pain which have been on fire all day. After the second application and an onslaught of coughing from a few rows back, I was nearly certain that this sort of coughing hadn’t occurred prior to Ben Ben time, so I knew I had to slow my roll. That stuff can be intense. Anyway, here I am. So tired and heavy I could collapse. And I did. I did that thing where you open the door and drop all of your things and small items like lipstick and pens go rolling out of your purse and you just lay there in a hard, thudded silence, face down in a bath of white linen. Also, the fact that it was a big king sized bed, which is totally unnecessary for me but awaiting my laying in it, made it feel all so luxurious. 

King Size.
I’m still in that phase where hotels are a novelty and every part of them is fun. I imagine this is how flying on airplanes started out for most of us. But now it’s like this exhaustive, painstaking process. Gotta work on that. Anyway I was almost too tired to put on Jammie’s. But I did of course; I’m not an animal. 

You just have to love hotel room culture, right? I just called the front desk and requested a wake up call. They said it was their pleasure. How nice are they! The cab driver asked me why I was here as we zipped around new territory and I took it all in through the backseat windows– beautiful place from what I could see. I decided to go for it, figured I need the practice anyway and the world needs to know. I said I was here to advocate for disease awareness and funding because it not only costs the country billions of dollars every year, it causes immeasurable suffering to millions around the world and right here in the US of A. After thirty years of inaction, its just time to make it right, ya know? (He didn’t say anything, but I went on. He at least pretended to listen) It’s been ignored and desperately needs adequate funding for research so we can treat and eventually cure it. And that’s basically it. There was a pause, then the rhythmic click of his blinker and a lane change, and another small pause. 

“I pray for you. All of you who sick and all of you fighting!” 

I wanted to hug him right then, but restrained myself and told him I really appreciated that, and I really did. We would take all we could get, I told him. And he said he’d pray hard. When he dropped me at the hotel, he told the bellhop “Hey! You take care of this young lady!!” The dude smiled and said “got it.” It all feels like some Netflix tv drama. Hard to explain. But really, really good to be here. It feels right. 

It’s a long time coming having the chance to converse with people face to face, not through 140 word count snarky tweets with every kind of hashtag. I want to meet people involved in the system, shake their hand and look them in the eye. It will be nice to offer a name and a face with the disease, and tell the stories of people who are in desperate need but have been ignored for decades. For months I’ve craved a tactical human interaction where I could explore this subject, a connection where I could share the multitude of issues and see a reaction within another human being. And maybe, just maybe, we actually start achieving the solutions– which are just lying in wait for us, like some leftover suit at the dry cleaner. We don’t even have to brainstorm the solution, we know it! We just have to convince them we’re worth it. 

I’ve longed to tell our stories out loud, beyond online. I am exhausted of twitter, I get down about Facebook, and clearly, I even abandoned this space a while. That’s another story. But the point is, Boots are on the ground, I’m ready to rumble and do what lobbyists do and talk about the multifaceted issues around mecfs preceded about talk of the weather and how crazy it must be to work in politics right now! (Cause like seriously, it must be crazy) 

ORRRRRRRRRR I just lay down on the steps of the NIH all day because I’m too “malaised” to move.  

The questions is, I think most personally for me, is WHAT ARE WE WAITING FOR? We know better now, so we should do better.  Oh shit, it’s 2 am. But I’m not worried, I got that wake up call all worked out. 

I miss land lines.

In my mind I’m here for a simple reason–to help remind policy makers that this disease and those sick with it aren’t going anywhere. This will only get bigger, it will only get worse. The cost will become outrageous. Our options are basically zero in finding and treating this properly, so we’re leaving our fellow Americans in the dirt. Like my Uncle Tom says: “That don’t be right.”  There are so many things that need addressing and fixing, and if I consider them all I become easily defeated. But all of this has been a meditation in simply doing one thing at a time and doing it well. Doing exactly what’s in front of you. 

So that’s how I’ll go about this trip. As clueless as I am, I trust in something deeper that helped bring me here, and I believe fully that we CAN fix this. We CAN do better. It’s just time to.. you know, pick up the pace. We’ve been in line at the DMV for thirty years– I think it’s time our number was called. 

Will keep yall posted. Thank you for…..everything. 

Health, Happiness, Battleground 

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

Let the Spider Live

When the phone rang I was in the kitchen, boiling a potful of spaghetti and whistling along with an FM broadcast of the overture to Rossini’s The Thieving Magpie, which has to be the perfect music for cooking pasta.

wind-up-bird-chronicleIs this not the most perfect first sentence for a novel you’ve ever read? It reads to me like poetry. It’s the first line from The Wind Up Bird Chronicle by Haruki Murikami, a novel I’ve been hypnotized by for over a month now. I finished it yesterday and I have that accomplished but sad void inside where the book used to live. It was a colossal novel and could have gone on for a thousand more pages, and I’d be happy to read them. The Wind Up Bird came after a similarly mesmerizing experience reading two of his other novels: A Wild Sheep Chase and Kafka of the Shore. I couldn’t say which I love the most–they’re all my favorite. Suffice it to say, Murikami is my favorite new author, and I’m a little late to the game. Luckily for me, he is a such a prolific writer with a large repertoire to choose from, and I just can’t see transitioning to a new authors work right now. I’m glued to his clean, composed writing, rock solid metaphors, and uncharted territory in terms of subject matter, truly. Read any one of the aforementioned and you’ll know what I mean. Transitioning to a new author now would be like shopping at Armani your whole life and then being thrust into a jam-packed Forever 21 store with flashing lights and blaring electronic house music. I just have to stick with him for now.

I can’t sleep again. It’s 4 am and I’ve been up and down all night. Actually it’s been more back and forth: bedroom kitchen, bedroom kitchen, microwave heat pad, kitchen bedroom. My bones are achy all over, the flu-type of aches, except that it’s explicitly in my bones and not muscles. Don’t ask how I know that for sure, but I do. There’s nerve pain, muscle pain, and bone pain. This time it’s the bones. When I rustle the sheets to get out of bed, Monty’s head jerks up to watch me, calculating whether he should get up to follow. But when I hold up the heat pack in my hands, he knows I’ll be back in one minute and thirty seconds, or something close to it. His heavy head plops down, he stretches all four legs and takes a deep breath, then drifts away. There’s something calming about Monty sleep on the edge of my bed, his belly rising and falling. It’s also nice knowing he’ll save me from my nightmares when I’m stuck in one and can’t wake myself up. I envy how perfectly in sync his body is with nature. The rhythms are so obvious. Always asleep by 10:00 pm, awake around 8 to go outside, and pawing at the pantry door at 6:30, ready for dinner. My body’s internal clock has been broken for years, so it’s nice to see one that actually works. I wonder what he’s dreaming of now. He’s chasing something fast because his legs are kicking away and he’s making small whines and growls. Probably a squirrel.

Sometimes I take insomnia as not a symptom or interruption, but a sign that I should probably just wake up. So here I am, here it is.

There is a large black spider that I noticed out of the corner of my eye when I was reading earlier.  In my peripheral I noticed something dark making those jagged, stop-go movements along the wall. By it’s jerky advance I figured it was a spider, but I was not expecting the huge size of the thing. The circumference a tad bigger than a mardi-gras debloon. It’s not long legs that get to me, but when they have a thick body- forgetaboutit. This one did, and every time I looked his way he stopped dead in his tracks. I tried to catch him anyway to let him outside, but to no avail, so we’re just hanging out I guess. He can’t make up his mind about staying or leaving my room, but when I intervene and herd him like a sheep in the direction of the door, he splits and goes the other way. Owell. I’ve become pretty desensitized to arachnids, insects and even vermin since moving back to “the farm.” We get a lot of Wolf Spiders here, which look exactly how they sound–frighteningly huge with thick hairy legs. They are abundant but not poisonous. Sometimes I see Monty pounce to a corner of the room and I know that’s what he’s after. For whatever reason, maybe it’s the statue of St. Francis in the garden, I feel the need to save every animal I come across in this house. Same goes for the pool. Sometimes this means taking a substantial amount of time just to save some critter, which I’d imagine many people would call a damned waste of time. And maybe they’d be right. But the mouse would beg to differ.

Once, I was trying to save a small frog in the pool who was being a real jerk about it. He kept jutting to opposite corners every time I went to swoop him up. Finally he was sucked into one of the skimmers on the side and I was able to scoop him out. When I looked in at all the other debris and leaves swirling around in the basket, I saw a large spider struggling to stick to the side. If I put the lid back on top he would obviously die in there. I squatted there in the sun watching a while, and it occurred to me Why the frog but not the spider? I reached in and scooped him out too. Ever since, I save all the animals around here that I’m able, and there are a lot and of every variety. Last summer it was a rather large blue skink–not easy. But I just can’t see where we should draw a line on who stays and who goes. I find it funny when I hear that bears or deer are “encroaching on our land!” Wasn’t it always their land, or just land where they hung out, until we decided to develop and build on it, driving them further and further out until there was no place left to go? I don’t mean to be some PETA extremist throwing paint on our growth. It just seems like the earth is a large enough place that we should be able to live in tandem with creatures who came far before we did without pushing them to the edge. “Population control” means lots of dead animals. And I understand the premise, the intention. I don’t know, maybe I’m too romantic and that’s a Utopia that just isn’t possible.

One morning while brushing my teeth, I kept hearing strange high pitched squeaks. At first I thought it was the AC unit or some indoor appliance. But then I saw Monty heard it too, and was sniffing all around with his tail and ears rigid and alert. He sniffed the ground until he got to the bathtub and stopped. I heard the squeaks again, and like a scene out of a Hitchcock movie, I slooowly peeled back the shower curtain, when suddenly a mouse squeaked and bolted, running for his life in circles around the tub. Like any civil woman, I shouted loudly and needlessly, while Monty tried to lunge inside the tub to capture it, I guess. Once I collected myself, pulled Monty away, I saw that it was just a baby mouse. We all came to a hault, and I could see his poor tiny heart thumping. Finally I found a gladware container, that’s basically all they’re used for at this house, slowly ushered him in and let him free outside. He quickly disappeared underneath the leaves and Monty sniffed at the spot for a while. I have so much uninterrupted time for these kinds of things, and I think that’s why they happen. If I were a busy woman late to work, maybe I’d have a husband and maybe he’d have killed the mouse and we’d have gone on with our lives. Funny how differently things can turn out.

Now I cannot see the spider, which I think is actually scarier than seeing the spider, because who knows? I keep jerking around suddenly when I feel an itch or some movement, but it’s mostly just my mind freaking me out. Hopefully he’s gone to the hallway bathroom–that’s where most of them end up.

Anyway, nights like these are not infrequent for me. I am often up at strange hours, and years ago I realized how sacred the night had become to my life. It felt like this whole other private world. No questions, no explanations and defenses, no phone. The walls come down, and a lot of ideas come to me then, sometimes annoyingly when I’m really tired, but they’re incessant and poke at me, so I keep a notebook next to the bed. After I write them down my mind settles. Sometimes they’re poems, dreams, letters, randomly long essays, and sometimes they’re just a one line sentence that is begging to be written. Recently they’re rhyming poems, which normally I hate. But strike when the irons hot, I guess. I think that most of my poems are crappy, but I find when I keep at a few of them for long enough, sometimes weeks– a little work everyday– I might end up with two or three stanzas that I would call decent bordering on good. I’m not sure, there’s really no way to gauge your own work.

You’re doing it again
You’re talking to yourself
I said that I wouldn’t
But there is no one else
Whom else could I speak
Without opening my mouth?

You’re wise enough to know now
there’s two of us inside
a sick one who is fading
and a strong one that won’t die
the reflection in the mirror
is a face, and not a mind
don’t let that pretty shadow you,
think that’s where to find
the one that wakes you from the dream
the one that comes out alive
one of us lives by numbers
one of us doesn’t tell time

There’s something you said,
And you weren’t wrong.
Things get weird
Alone too long

the question is
who’s writing this
the writer or the wrong

That’s a snidbit from my “No I’m Not Talking to Myself” series. Don’t worry, it’s not meant to be sad and I hope it doesn’t come off that way. But maybe it does, like I said, I need a teacher. I know they’re just basic rhymes and they lack some of the mystery and depth that great poetry contains. But I’ll keep at it and add the rest to my poetry page. Haters can leave comments there. It’s cool, I can take it.

I should try to sleep now. I’ve written way too much and I just transferred half of this post to a document on my computer that will probably never get read. My mind is so scattered lately, I have to get organized, but it’s been unusually hard. I guess I’ll start with sleep. That’s an OK place to start.

I’ll leave you with my favorite lines from The Wind Up Bird Chronicles. I can’t recommend Murakami enough, and I’ll write more on him next time. It has been a supernatural experience reading his books. Really.

“What gave money its true meaning was its dark-night namelessness, its breathtaking interchangeability.” 

“Once he got a taste of the world of mass media, though, you could almost see him licking his chops. He was good. If anything, he seemed more relaxed in front of the cameras than in the real world.” 

“..We never saw each other again. The relief this gave me bordered on ecstasy. Nothing so consumes a person as meaningless exertion.” 

“When your hair starts to thin, it must feel as if your life is being worn away..as if you’ve taken a giant step in the direction of death, the last Big Consumption.”

“Everything was intertwined, with the complexity of a three-dimensional puzzle- a puzzle in which truth was not necessarily fact and fact not necessarily true.” 

“I guess time doesn’t flow in order does it–A, B, C, D? It just sort of goes where it feels like going.”

Oh, I see the spider. He’s in the corner and positioned on his way out. Maybe I’ll save him in a glad-ware container tomorrow. For now I feel like I’m going to ralph. Good night.

Health, Happiness, Arachnisomnia

Cheers To a Slowly Dying Christmas Tree and the Start of Something New

My Christmas tree is still up. We might start there..

Two Fun Facts. Even when your Christmas tree begins to shrivel and sadly die in the corner of your living room:
1. The decorative lights still emit that magical glow when turned on at night and you’d never know their was death lurking behind them.
2. It still smells like Christmas! Even while dying, that one of a kind sap-infused, woodsy, cinnamon smell still infuses the room from the corner where the tree sits, but looks more like it’s floating.

I still catch random whiffs of Christmas when walking by or while reading on the couch. It’s like the original air-freshener, and since the scent is so sporadic and only comes around once a year, like Girl Scout cookies, encountering it feels uniquely special. Like glimpsing a shooting star or seeing a bald eagle. Sometime its feels like a nice gift the tree is sending my way. I think, Hey thanks tree, you have a good day too! What I’m saying is, you begin to talk to things that are not human when you live alone, and that’s OK. It’s bound to happen. I think. I’ll ask Monty.

I tried deciding whether a Christmas tree still hanging around on January 22nd that also happens to be dying is depressing conceptually or not. I say conceptually because I can say from an actual standpoint, it most definitely is not. It still brings all the joy it did from day one. I am a Christmas enthusiast and my fervor has always extended to the art of holiday decor and the unmistakable enchantment of a Real Live Christmas Tree. Everything about them makes me happy. Until I start seeing them on the corner of peoples driveways laying on their side next to the trash can– what a tragically depressing image to encounter. Or it always was for me, growing up. I feel that keeping the tree around this long and seeing it to its final days, I’m squeezing every ounce of wander out of what Christmas trees have to offer. It’s like The Giving Tree! Except in this case at the end, we burn it in a large pile of leaves and miscellaneous dead foliage and branches out in the prairie. But I find this to be a far less sad ending to the tree than awaiting its demise on a driveway and being tossed in a trash truck full of rotting food and discarded junk. I wonder if it freshens up the smell of the garbage truck? Probably not. Anyway burning the tree returns it to where it came, and whether that works out scientifically or not, for me it feels like a much kinder fate. And symbolically more appropriate.

As for outsiders, seeing a dying Christmas tree still lit up in my living room might look like a lapse in civility or domestication on my part– some kind of improper etiquette. Like having dishes in the sink or a mess of a house when company shows up. It’s always a little shameful when people visit, especially unexpectedly, and your place isnt tidy. Somehow it feels like a reflection of you– whether clean or dirty, we’ve come to see dishes in the sink as a little pitiful and a perfectly sanitary house as the height of a life in order! But order doesn’t imply anything moral or productive. Then again, a really dirty house does start to make you wonder about the direction someones life is going. If you haven’t done laundry to dishes in over three months, it might be time to talk to someone. It’s funny how having a clean house gives us a sense of pride and sends the message of “I’ve got my shit together and things are great!” Somewhere deep down, don’t we all secretly wish our homes smelled faintly of Pier One Imports? THAT is a fresh, successful smell if there ever were one. Unfortunately you can’t detect what your own house smells like, you can’t discern your own smell, so you kindof just have to keep up with the cleaning, pray that your pheromones mix well with your dish soap and the wood of your cabinetry and whatever else is informing the air of your house, and hope for the best. Many houses I can think of from growing up have distinct smells to them, that are still there when I visit today. It always elicits memories of certain times way back when. Funny how just a smell can be so tightly tied to a person or experience. I can still remember the exact smell of my grandma baking homemade bread. It takes me right back to childhood, to punching down the raised dough in those huge seventies-colored bowls, and to that first piece warm out of the oven. Son of a nutcracker I am hungry now.

Anyway, I imagine somewhere in a book of manners and proper social behavior, there is a responsible cutoff date for the Christmas tree, and if yours is up past that date, forget it. You might as well quit your job and stop tying. For me I don’t have a real job so there’s a personal loophole–if in fact, Jan. 23rd is past the cutoff date for tossing out the tree. Anything after that is an obvious decay of domestication. Or maybe just poor manners.  Maybe I’m still in the clear because it’s still within 30 days of Christmas, and if I can still technically return a gift to Target, then I should be squared away with the tree. Either way, none of this actually matters and obviously you should keep your tree up as long as it makes you happy and does not accrue mold. Isn’t that how we justify killing them for the purpose of holiday decoration in the first place? By enjoying and appreciating their beauty and assorted pleasures for as long as possible, we sort of redeem cutting them down. Sort of. I don’t know, what is the environmentalist take on real Christmas trees? Is real or fake the greener choice? Probably fake, right? Let me check.

Well that was a hellstorm. I’ll save you some googling time and just say the conclusion to ten articles on this very subject is that the science is still out on conclusively naming one or the other as better (or worse) environmentally. Worth noting is that artificial trees are created using this special ingredient calling PVC (polyvinyl chloride) which is not recyclable nor completely biodegradable. Also vinyl-chloride is listed as a human carcinogen. You have to use the artificial tree anywhere from 7-20 years (there are multiple conflicting studies)  in order to make it less harmful to the environment than using a real Christmas tree. Also at least 90% of real Christmas trees are farmed, which keeps the natural population healthily sustained. Hmm, one can emit hazardous fumes in too high a dose, and one provides magical Christmas dust that enlivens the senses and makes miracles. So I am biased clearly, but I still say down with artificial arbor. Go real. Go green. And inhale that magical smell until March if you want to.

Its funny, but even though Christmas is well over, I’m still recovering from the festivities I partook in. Some of it is my fault; I have a hard time doing what’s best for myself in terms of the illness, and doing what is fun and adventurous and happy in the moment. This disease is so insidious, it doesn’t let you know how much you’ll have to pay until you’ve already done the damage. Its like going swimming today, but not having to hold your breath until tomorrow. Say you swim in the ocean and get distracted by the tropical fish. You go under water following them around, and all the while you think “I haven’t been under that long, I’ll definitely be able to hold my breath this long tomorrow when the time comes.” You think that because you’re stupid and you didn’t learn your lesson from last time. The next day comes and you have to hold your breath for all the times you went under water, but on some of your sub-surface excursions, you were distracted by awesome sea life and stayed under like 3 minutes. Now you’re trying to hold your breath for three minute stints and you’re blue in the face and passing out and thinking, why did I go under the water. Why Mary WHY. So, that’s one way to explain it. Anyway, Christmas is happiness and this year it was a great one. Sometimes the dive is worth turning blue.

I’m not sure what it is exactly, but I’ve had the feeling for a while now that 2017 is going to be a very special year. I can’t say how specifically, but I sense that big changes are in store. Important changes. Great changes. And that the start of something new and big has already begun its course. It’s only an intuition so what do I know. Maybe anything compared to the dismal 2016 will seem auspicious by default. But something tells me it will be more than that.

I never saw myself in the world of advocacy or politics, but tomorrow is the first day of a very important journey that I suppose will include both. It’s the first time I will meet with a politician to talk about me/cfs and address the funding issue, in person. I’m meeting with the Louisiana state director, Brian McNabb, who works in the office of Senator Bill Cassidy. I have no idea how the meeting will go. Of course, I have my talking points prepared and there is only so much my brain can store. My main is goal is to tell the truth and leave a lasting impact. In my imagination the scenario goes like this:

We start with some charming banter yada yada yada, he pours two glasses of whiskey, and as the ice clinks in our glasses I say “Look McNabb, we need $100 million from the NIH for this disease. Minimum. And we need it yesterday.” He thinks a moment, sips his drink img_6334and says “You know, after reading the riveting history of this disease, the outright neglect, and the heartbreaking stories of so many who’ve been devastated by it, I’d like to offer $200 million toward biomedical research. It’s actually the more appropriate and fair amount.” I walk over, raise my glass to toast to this proposal and say “Wonderful Brian. You’re doing a really incredible thing.” Clink!

“How soon will the funding come through to the NIH?” He thinks a moment, “I’ll have to get a few documents in order, but I’d say by tomorrow around 4. Does that sound alright?” I begin to put on my jacket to leave. “Sounds fine.” He opens the door, “I’ll let Mr. Collins know about the funding change. Anything else?” Walking out I hesitate, stop, then turn around. “Actually, I have these parking tickets in New Orleans I never paid-” “Ms. Gelpi! Don’t be ridiculous! I’m not a genie I can’t just say ‘poof!’ and fix everything!” I blush from assuming something so stupid. “You’re right, I’m sorry. It was foolish to ask. Forgive me.” I turn my head away a little embarrassed. He nods affirmatively and ushers  me out. Before he closes the door I yell inside just to be sure “But we’re still on, $200 mil to the NIH tomorrow by 4? Right?” He already has a phone to his ear and looks distracted by some new matter. “Right. 200 mil. 4 o clock. G’bye now.” The door shuts and I turn to walk out, grabbing a handful of Worthers Original candies from the crystal bowl on the secretaries desk. She doesn’t mind. Outside it’s chilly as I walk to my car and my legs are already aching, but I don’t mind, it’s too happy an occasion. I arrive at my car and immediately notice a boot on the front tire because my meter expired while I was inside. There’s also a notice that says I have dozens of unpaid parking tickets and my car has been seized. I turn around and march back toward the tall marbly building. I dial my mom, walking up the steps. “Well?” she answers with anticipation. “Mom! I’ve got good and bad news, which would you like to hear first?”

The End

That sounds like a reasonable scenario, right? I’ve heard that’s how Washington works so, I’ll keep you posted. :)

Health, happiness, GREEN.

All I Want For Christmas is $100 Million Dollars

100 million dollars. I’ve never lived in a world where that figure represented an actual amount of money. I don’t think I’ve ever used it for anything more than hyperbolic effect in conversation. As in, Anthropologie is so expensive even a scarf there is like, 100 million dollars. I’m not even sure I could write out that number with confidence about how many zeros follow the number one. Unacquainted as I am, I’m learning to write and say it with total conviction, because now it does represent an actual amount of money, and I am seeking it with earnestness. Within the strange world of politics-meets-medicine, it’s no longer an absurd number. In this new context it’s become completely reasonable. In fact, some would say given the facts, it’s an exceptionally modest amount. Go figure.

As many of you are probably tired of reading about, I began a campaign earlier this year requesting that the NIH allocate this amount of funding toward the research of a mostly neglected, orphaned disease. Over the year, this has become the most important pursuit of my life. And I believe the cause to be one of the most important in anyones life: our health. Like many things, you don’t realize how important it is until you don’t have it anymore.  Stepping foot into the advocacy world provided me with a new, unexpected perspective–to see the community I’m a part of, from the outside in. This adjusted outlook has fueled my insistence for change to a degree I’ve never felt before. Interestingly enough, this outside viewpoint began within my own family, but not from my own experience with the disease.

I rarely talk or write about it, but my mom has lived with ME/CFS for two and a half decades. Most people with this disease will tell you there is a pre-sick version of themselves that couldn’t quite  survive once the illness took hold. I was only 2 when my mom became sick, so I don’t remember or know her as any other way than how she is. I’ve been reflecting on the reality that there is a whole side to her I’ve never really known. Prior to getting sick, she might better be described as a type-A personality. She was fast-moving, organized, sharp–an ER nurse. She and my dad had a large social circle and were both involved in the community and church. But no one would ever know about this past part of her, how could they? She left work tentatively to devote herself full-time to motherhood and raising four children under the age of five. In pictures she looks happy and privileged to be a mom and wife. In old videos she is lively and beaming, her voice animated, giggly at times.

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Real nice, Doug.

Christmas morning, 1984. 4:30 am. Grainy video footage taken mostly by my dad (a tech geek elated by new video recording technology) reveals this other side to my mom that many people besides me have never known. In the classic reddish-brown hue that tints all memorabilia from the 70‘s and the early 80’s, three kids under the age of five are glowing in wait in our sunken living room. The fourth kid, me, is five months old sitting in a car seat on the sofa. (Thanks guys) My siblings frantic excitement is palpable–the kind that only comes on Christmas from children who still believe. They remind me of shaken up cans of cola, overflowing with joy. In contrast my mom and dad aren’t entirely awake yet given the hour, and early video footage provides evidence of a boisterous Christmas Eve party late into the night before. They speak in soft tones of voices and have glazed over look on their faces. Despite the lack of sleep, my mom still looks beautiful in a long white robe, rubbing her eyes intermittently to try and pep up. The kids grow more intoxicated with each new gift, and both my parents take turns reacting to 3 individual shouts of “Look at my new toy! Look! Can you open this?” Crumpled up wrapping paper begins to litter the room like discarded wads of kleenex. Outside, it’s still dark.

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Toy assembly line, 4:45 am
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My brother Nick is crying because he can’t find his legos.

I love this footage for many reasons. For one thing, it captures such an iconic display of Christmas morning during such a happy time as if out of a Rockwell painting. You can sense the love between my parents, and observe childhood traits in my siblings that still exist today. Nick is methodical and organized with his unwrapping, and with everything. At one point my sister Amelie opens a gift and says “Wowwww!!!”as her eyes grow huge with excitement. When she shows it to my mom she laughs and says “Amelie, this is just the box.” My brother Doug still receives high-tech gadgets for Christmas and maintains the same enthusiasm. And me, I am still perfectly content to lie on the couch surrounded by my siblings–listen to them tell stories, laugh, bicker, cook, play games, and pine for my mothers attention. Even as a baby, I was comfortable and entertained just watching and listening to them live around me.

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Christmas Eve, 1984

The footage is also deeply nostalgic of course. It’s both wonderful and emotional to hear my dads voice again, to see him alive and in his element. Happy, goofy, making corny jokes. But it’s also a snapshot of the woman my mom was before she got sick. It’s not that this part of her is totally gone, but the illness simply changes your capacity for regular things, even socializing. As such you’re forced to make adjustments. She appears so spirited and vivid in these videos, so unweighed down. Maybe it’s because I so often see how the illness has effected my own appearance every time I look in the mirror, my posture, my facial expression even, that I can easily spot how it’s changed her physically, her whole body language, the inflections of her voice. Even sleepy and in the early hours of morning, there’s an underlying, unrestricted vigor in her–something that lies dormant now. There is a heaviness to this disease, like an invisible ton of bricks you carry with you at all times. Look hard enough and it’s not so hard to see.

My mom was never able to go back to ER nursing as planned. “I couldn’t trust my brain anymore” she says, and the stakes in that line of work were just too high. While she still calls so many people friends and loves them the same, her social life took an extremely hard hit. Given the insidious nature of this disease, I imagine it’s difficult for those who knew her before she was sick to adjust to this comparatively different, limited person–who by most accounts appears so much the same. As a result, relationships struggle to sustain the blow dealt by all the change, and to continuously explain the illness and your newfound incapabilities is exhausting, especially because you have such little energy to begin with. As a result, many people tire out and turn inward, ending up more like hermits or monks. My mom has always been strong and independent, never one to feel sorry for herself or even reach out for help, perhaps sometimes when she could use it. As much as she’s made the best of it and adapted to a less social life, I know a place in her aches not just for the friendships she had, but for the friend she was once capable of being. This is one of the hardest adjustments to the illness, particularly painful because it happens during a time when you need friends and support the most.

Since the birth of her second child, my sisters health has been steadily declining. For the past year and half she has slowly worsened with classic MECFS symptoms. Ruling out many other diseases that mimic this one, she will see a specialist soon for an official diagnosis. But many tests are showing the same abnormalities as those with ME. She is the same age that my mom was when she got sick.  Fortunately because we know now the best course of action, she has a better chance of recovery by addressing it early and aggressively. In March, she left her job tentatively to attend to her health full-time and attempt to get her symptoms under control. She has seen what pushing it has done to both my mom and me, and I don’t think any of us could stand it if it happened to her too. I know leaving her job was not easy for her. She loved her career as an interior designer, began a successful start-up firm with a partner and worked extremely hard. But as her symptoms became more frequent, more severe, longer and harder to recover from, she knew she had a decision to make: Cut her losses now or risk losing a lot more later on. She chose to act now, which was no doubt the right way to go, but I doubt that made the decision any easier on her.

For so long, my whole family, especially my sister and my mom have been my champions who carried me when I was weak and encouraged me when I felt hopeless. I’m so eternally grateful to them for all they’ve done and continue to do, and I’ve always wondered how I will ever repay them and my whole family for their kindness. I believe now it’s my turn to be their champions. Maybe this is my chance to finally return the favor.

I don’t have money to pay back the expenses, and I don’t have the strength to reimburse them by “working off” my debt. What I do have is a voice. A small platform. And a petition with 40,000 signatures. I’ve watched what this illness has done to my family. I’ve read the hundreds of heartbreaking stories that sick people have left on the petition page or emailed to me. I’ve become friends with Jamison Hill, the first person I’ve met who’s close to my age and has MECFS. He was a former personal trainer, and has now been bedridden since January of 2015. He lives in a dark room, able to tolerate exceptionally little light and sound; most days he is barely able to talk. Seeing this widespread devastation was upsetting but also opened my eyes to the urgency and dire need of this issue. It lit a fire within me that’s stronger and different than before. I think sometimes it’s easier to fight for other people than it is yourself.

My mom and sister never gave up on me, and so I promise that I won’t give up on this. It’s a black and white petition with a very specific ask. I won’t settle for the gray bureaucracy of political red-tape that is slow moving, inefficient and has failed this community for the last 30 years. I am hoping Santa, or the right senator, can bypass all that.

What an amazing Christmas it could be for millions of people with this disease around the world, to finally have real hope knowing that change is happening now, and the kind of research we’ve all been waiting on will finally be possible. It’s not a change that would normally happen quickly. And I don’t expect this fight to be easy or painless. But, it is Christmas. And even at 32, I still believe in something powerful around this time of year that makes anything possible. I know that this is, but it will require the right kind of help. Here’s hoping, for all of us, that we get it.

Health, Happiness, Believe

If you’d like to add your voice or help circulate the petition to more people, that would be amazing and please click here.

To donate to Jamison Hill’s medical fund click the link!

Yall Rock, Thank you to all.

Tension of the Opposites

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Bye Old Life

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

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My Life: Mid Rise Skinnies

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

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

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

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

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

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

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

Health, Happiness, Settling Mud

The Chronic Fatigue Syndrome Song. Hot Off the Street.

Since I have a large amount of free time, I started writing a song about ME/CFS. I called it “The Myalgic Encephalomyelitis But For Our Purposes the Chronic Fatigue Syndrome Song.” Slides right off the tongue right? I told myself if we hit 40,000 signatures, I’d post the song and lighten things up a bit. There’s not much humor in chronic disease talk or advocacy, but I think we could all use some. So, 40,000 signatures later..here we are. A few things.

But first, sign the danged petition. Did you sign it? Just sign it. Did you? Click on the link and type your name. Did you do that? OK, well then do it now. I’ll wait. Sign it. You’ve signed it now? Great! I don’t have to keep saying it? I’ll stop. Cool. OK but so just to be clear you signed it right?  Thank you. I love you. https://www.change.org/p/increase-research-funding-for-me-cfs

1. I don’t claim to know how to play guitar. I learned six chords on it a few years ago and can fumble through a few songs, most of them by Taylor Swift as her songs consist of the same four chords. I love it. Anyway this is why my song is only two chords. Sorry.

2. Monty makes some background noise now and then that I was too tired to edit out. He was chewing on some toy the whole time I played. Then in the middle of verse 3 decides he wants to play tug of war. He’s never had great timing, and we’re working on that.

3. This is more of a philosophical thought in general that I had while writing the song–maybe all diseases should come with their own jingle? That way tragic news might be a tad easier to take. Like “hey hey hey, you’ve got cancer in you brain!” Or “Looks like you’ve got a case of GOUT, hey! But we can fix that, no DOUBT, hey!” More creative lyrically, but you get the idea.

4. I’m sure someone will comment that I don’t look sick. Understandable, and truthfully I have improved from how I was last November when it was challenging just to walk. But looks are deceiving and they call this disease invisible for a reason. All those pill bottles behind me are my own, that I’ve been haphazardly saving for the last 9 months or so. I’m wearing my pajamas but threw on a bra and some lipstick– you know, to be professional.

5. This song is for anyone who is sick, including those with chronic illness, and especially ME/CFS. I hope it makes you laugh or smile, because I know that being sick is a weight you carry around all the time, and it’s heavy and intense to deal with daily. Sometimes you just have to step back and laugh. So let’s have some fun.

But make no mistake, this took work and has a specific goal. Rhyming with adrenal insufficiency is no easy task!  I crashed week after week just trying to record it (I know, and it’s still poor quality) but I wanted it to be decent enough to make the rounds, maybe inform some people, make others laugh, and perhaps land on the desk of someone who can help us. You never know if you never try. I’m ready to fight for this as long as it takes, sick or well. So until we get the adequate funding, prepare for more creative/ridiculous forms of advocacy, and please help spread the word. Yall have been a huge help, keep it goin! Thanks again, and enjoy :)

Health, Happiness, and Disease Jingles