How to Write About Pain

For a few days now, I’ve been writing about the experience of chronic pain, in a descriptive way that might convey the experience to someone who’s never lived with it before, and also as a comparison against acute/short-term pain, beyond their obvious difference in duration. I think I finally came up with a good analogy to depict the experience of daily pain, the internal battle it becomes, the consuming and exhaustive nature it takes on. But I’m not going to write about that yet. Because also for the last few days, I’ve been questioning why I’ve taken the time to try and get this very unique experience across anyway. I’ve wondered whether it’s futile in the first place, but more I’ve been reflecting on whether the point in it is genuine; if I’m doing a service of any kind, or if my ego has found a formal way to complain. Like Tolle says, that is the ego’s favorite thing to do.

As an FYI, I’ll post about chronic pain next time, because I do actually think it’s important to explore for many reasons, especially if you’ve not been through it. And I’ll write more about why when I come there. But first I had to type out loud, because I question the morality of what I do—writing about my broken body and the battles that accompany it—or if there is any in it, all the time. I constantly ask whether I’m evolving, learning anything, or passing good things along, important things. Or if I’ve sunk to the lowest common denominator of the human experience, something literally everyone goes through in his life, and if it’s just too easy to make that a goal and have it blinded by ego.

I always worry about going too far into how “bad” things can feel. Sometimes, there is truly no point in bemoaning something you can’t control, and it doesn’t help anyone to go on and on about any matter of it. In fact it can easily make things worse, redirecting the mind to focus on negative aspects and intensifying the size of something that you are trying to keep small, in check. Not to mention, you’ll bore everyone to tears. No one likes a whiner, and I try to be cautious about keeping the line drawn, bold and underlined between the two pathways the narrative can take:

One describes an experience so that people on the outside might have a better idea of what his fellow humans are dealing with. It can help expand “common ground”, I think. If it’s done a very good job, it might help replace judgment with compassion, or prevent misunderstanding or a lack of empathy due to disbelief that it’s even real. It helps close the gap between the experiences of two people who have not lived in the others world.

lifejustisntfairnowisit_d9c0a33f9be96e6ce36748350b45b573
Guilty
The other path, takes pain and gives it too much of a stage. It exploits something that all humans go through in some capacity and disguises itself as some kind of cursed reward. It gains momentum by reliving the same woes with new words, and by getting others indulge in their own without reflection. It’s not adding anything new or valuable to the conversation. If it isn’t honest or asking for help, if it isn’t uplifting people, but just reinforcing old wounds, it’s fair to say it’s gone south. Ever notice how someone complaining can rub off on you and lead you to do the same, or simply leave you feeling depressed? I’ve experienced it in person, and I know writing and reading accounts can be just as powerful.

Similarly, a positive person, who still acknowledges reality but seems to see through their moment of pain, can leave you feeling hopeful and inspired. The difference is not that these people haven’t endured pain, but what they’ve done with it. How they chose to let it shape them.

I know I’ve crossed over into the negative side way more than I’d like to admit, and probably even fooled myself into thinking it was necessary. Talking about hardship will always draw people in, because we’re all being challenged in our own ways, carrying our unique burdens. But that’s why I scratch half these posts or become too afraid to write about things. It’s a necessary and good thing to talk about the realities we face, because so often it provides people reinforcement, encouragement, reminders they are not alone and the vital belief that they can endure their hardship, just as many before them have, and emerge on the other side. Reading other peoples stories has always inspired and comforted me. Sometimes I distrust myself and skip out on telling certain stories or of certain experiences, but I think maybe it takes practice in reading enough good stories, and knowing the difference between which one will do good, and which one is the ego getting his fill.

I pray constantly to be a source of optimism through honesty, not to exploit a reality that’s in comparison to some, very very lucky. I think you write about pain the same way you live with it, which is to keep in checked moderation and right sized, and attempt to keep eternity in view, somehow. I don’t know how to do this, but I know some good ways not to. So what can I do but try and hope that I’m on the right side of sharing a personal account. Usually if I become too whiny, my mother hits me. Kidding– but you have a big enough family and they don’t let you complain too long or past a certain point, so I’ve relied on them often to keep me in check. A good friend will do the same.

What I’ve learned so far is how easy it can be to start expecting things to go bad, because so many things go bad. But we do ourselves a disservice in becoming convinced the world has conspired against us and we’re doomed to draw the short end of the stick for the rest of our lives. The trouble with that kind of thinking, besides it having no intrinsic value, is that it assumes the rest of the world is riding the easy train to party-town, never confronting a hardship, enduring pain, or drawing their own crappy short sticks. No one has a monopoly on pain. It’s part of all our respective contracts here. So having the idea that your life is hard and everyone else is clueless and has it easy will only make your own pain worse by punctuating it with something that isn’t true, first. And second, that idea undermines the lives of others who do know pain good and well, but whose experience you are now denying, because you can’t see past your own. I cringe to consider how many times I’ve done this, being stuck in my own dark hole.

Pain can be blinding or clarifying, depending on how well it’s kept in check. It can be overwhelming in the moment but when held against the larger backdrop of our lives, it usually highlights what is good, it makes gratitude grow and can help you see with new eyes. If pain is held up only in its moment in the dark, and seen as punishment, bad luck, or some kind of payment you got stuck with and others are getting for free as though its some kind of tax, then you will pay continually, and your relief will be rare. Pain shouldn’t make us proud, it should show us humility. Acting well and grateful and good in the face of pain is what should make us proud.

Sometimes I think of my life from a birds eye view, looking at it plotted out on paper like a map, where I can trace with my finger through the course, beginning to end. When I get discouraged, I think that what I fear is living a life I can’t say that I’m proud of in the end, when I’m tracing my line and seeing how I behaved. I know what will make me proud is having loved fiercely, being steadfast, humble, trying, listening well, finding humor in every stupid day, and being grateful for the lucky life I was given, the family of love I was born into. In the meantime, it feels good to put your head down and work. Sometimes you endure the pain quietly, and know that you’ll be OK whether you tell someone about it or not. I think moderation plays a role, and a discernment in what is worth sharing and what will only exhaust us to speak about. In some way it comes down to self-awareness and restraint.

I’ll end with this passage I read in The Road to Character this morning, a book I’d highly recommend by David Brooks. The first quote is Brooks summarizing George Marshalls training at VMI, followed by a quote from Cicero, which Brooks used to explain the composed, revered manner of Marshall throughout his life.

“The whole object of VMI training was to teach Marshall how to exercise controlled power. The idea was that power exaggerates the dispositions–making a rude person ruder and controlling person more controlling. The higher you go in life, the fewer people there are to offer honest feedback or restrain your unpleasant traits. So it is best to learn those habits of self-restraint, including emotional self-restraint, at an early age…

That person then, whoever it may be, whose mind is quiet through consistency and self-control, who finds contentment in himself, who neither breaks down in adversity nor crumbles in fight, nor burns with any thirsty need nor dissolves into wild and futile excitement, that person in the wise one we are seeking, and that person is happy.” -Cicero

Health, Happiness, Restraint

P.S. This is dedicated to Varney Prejean, the eternal optimist in the face of pain and such a happy, loving, groovy person. If you’ve got an extra prayer, send one out for him. Hang tough Varn-dog, we’re rooting for you!

Apathy, Advocacy, Jumping In

I remember a conversation I had with my mom, roughly six years ago. It was not long after the Great Crash of 2011. I was slumped at a bar stool in my parents kitchen. I’d been crashed a while and not doing very well, physically or mentally. It was a grey, wet Winter, perfectly depressing, and I remember looking out our office window and thinking “I feel exactly like the weather.” I’d been caged up too long, among other side effects. Everything was a reminder of what I’d lost, what I believed the disease took. I knew I should be grateful I had somewhere to go, and I had people to take care of me at all. Not everyone has that, no doubt I was lucky. But I didn’t want help. That kind of surrender is never really easy, but when you’re in need, it’s really the only way to go. Resistance just ends up making you mean to the people who are trying to help you.

My mom was folding laundry, explaining to me the details of a promising new study going on, something involving the gut; I wouldn’t know because I was barely listening. She told me that I should follow the research and recommended I read a blog called Phoenix Rising, a veritable A-Z of everything MECFS. It might help me feel better if I at least understood more about the disease, on many levels.

But I could almost feel a visceral resistance to this idea. Ironically, I didn’t like reading books or blogs or stories about this disease. They only reinforced what I already knew, and they all ended the same—no one got better. I can remember holding back tears, angry tears I guess, that I didn’t want to read anything about this disease again unless it was an article touting that they found a cure.

They?

(Insert really awkward DC photo)

DC
So terrible.
6 years later, I found myself frozen in the doorway of room 129 in the Rayburn Building in Washington D.C. I was attending an event called “The Storm on Washington“–an event I felt a strong pull toward for a few months.

This room would be our “MECFS Command Center” throughout the long day–a place to commune in between meetings and rest, eat, talk, or collapse. (Really, there were beds) I hadn’t even entered and already I could feel the warmth of the room from so many bodies insides, at least 10 degrees hotter than the icy hallway. It was 9 am and a low, indecipherable murmur pervaded the room from multiple conversations–introductions and instructions and attempts to achieve order among a really huge, logistical effort. I stood there like a lost puppy, watching the quiet chaos unfold. I knew not one person. What the hell am I doing here?

Doctor
Meeting the MAN, Dr. Nahle
I was doing what I’d done many times before–jumping in without a clue. But I was among smart and determined people. The principal reason for being there was pretty easy anyway–to share my story, to try and humanize this disease and convey the experience with decision-makers. I’d told my story plenty of times before, I’d become pretty practiced.  That day 52 advocates would meet with over 70 congressional offices and representatives. A success in just making that happen, in my book.  (Thank you MEAction and SolveMECFS!)

It feels like there have been many beginnings to my entrance into the advocacy world. A place I never thought I’d enter, for reasons I’m still unsure of now. Bitterness maybe. Fear probably. I still feel like I’m hardly making a dent, but I am trying, finally. Bitterness, self-pity, doubt–all of those feelings depleted me, when I was already emptied of energy. They still come around. But finding small glimmers of faith that you might be where you’re supposed to be, even if the circumstances are crap, feel energizing. Any time I’ve come across hope, it’s like a flashlight turning on in a cave. It’s somehow always led me out, even if very slowly. But it usually means some kind of surrender; giving it a chance. I don’t write this as though finding purpose in a painful situation is easy. It’s not. Particularly chronic illness, which is long-term. It took a long time to figure out that I could still even have one, as I was. I still lose my way from time to time, and wait for a flashlight to flick on that I can follow.

I didn’t know when I published the petition last year that I was entering the world of they. Nor did I really know what I was doing then either, surprise surprise. I was following intuition and telling the truth, that’s it. But the same energy that brought me to DC encouraged me to write it. Call it the universe, or God, the collective unconscious, or soul–something outside the 5 senses was helping me out. I just sort of followed the scent.

Admittedly, I’m bad at campaigning. Gary Zukav says that when our soul and our intentions are lined up, the universe backs us in big ways. Maybe that’s what happened when it gained something like 20,000 signatures in a day. I was also lucky that my sister does know how to campaign, and my enormous family, circle of friends and other advocacy groups pitched in, all in huge ways, and now that petition has 42,000 signatures. When I wrote it I had my fingers crossed it would reach 1000.

Did 42,000 signatures fix the problem? No. But it did something else important. It connected me to so many people through the feedback page, where people can leave comments. People shared their personal stories, their loved ones stories, gratitude and words of encouragement. Total strangers said they’d pray for this effort. Every time I read one of those comments it made me want to work harder. It showed me how far-reaching and devastating this disease can be.

I thought had it bad? Talk about small potatoes. The petition did two things: 1. Showed me I could have it a lot worse, so easy on the self-pity, chief. 2. Stopped me from looking the other direction. Coincidentally, that’s exactly what we’re asking the government to stop doing now.

It was the petition that led me to connecting with an MECFS advocate online, who knew the D.C. Aide for Bill Cassidy, a Louisiana State Senator. I contacted him, which led me to a meeting with Cassidy’s number 2 guy and the Louisiana State Director, Brian McNabb. Meeting with McNabb for 2.5 hours, discussing everything MECFS was an incredible experience. Did it change anything? Maybe not. But it encouraged me big time. And in the end it scored me a meeting with Senator Cassidy. McNabb warned, it would be in between two events so it’d have to be quick, maybe 5 minutes. I said I’d take it.

So, I met Bill Cassidy in a parking lot on his walk to his car with a group of staffers surrounding us.

Cass
Parking Lot Office
I had to talk fast as he was late to his next meeting and his assistant kept saying “Sir, you’re very late, we need to go.” I spat all the vital things out as fast as I could. Knowing I didn’t have long, I left him with a folder where I’d printed out 25 pages of peoples comments and stories that they’s shared on the petition page. Did he read them? I’ll never know. But he looked me in the eye, he shook my hand, and he told me out loud “I really care about this issue.” I told him thank you, I couldn’t express how much we needed people to care. He said he wanted to continue the conversation when he had more time. We were being herded like cattle to his waiting car. A cynic might say he probably says that to everyone, but it didn’t matter. Here was one more person who had now at least heard of this disease and the issues, and also had some decision making power. His assistant who had hurried us both while listening to our conversation, started to get in her car, but stopped, got out, and gave me a hug first. Good stuff.

Later, my uncle who is a mutual friend of Representative Steve Scalise, had seen my “Chronic Fatigue Syndrome Song” on the petition page–a mostly embarrassing but celebratory song I wrote after hitting 40,000 signatures. He thought it was pretty funny, and asked if I was interested in a sit down

Scalise
Obligatory Photo, Thanks Mr. Scalise
with Steve Scalise, a Louisiana Representative and the Majority Whip. Umm, yes. So not long ago, my Uncle Paul and political mentor, Rep Steve Scalise and I all sat down for a while to talk MECFS. He was another kind and engaged listener. He asked good questions and was generous with his time. I told him my story, I attempted to tell the story of MECFS among my hiccuping brain, and Paul helped me convey some things when my words turned to spaghetti mid-sentence.

Would this meeting solve it? No, but it was one more person who now at least knew of the disease. Someone with decision making power. Count it.

It was exactly one week after that meeting that Scalise and others were shot in a baseball field in the middle of the morning. What?! I am as clumsy with thoughts as I am words when it comes to events like that. It’s so hard to understand, it happens way too often, and I still feel far away from it somehow. As cliche as is, I’m praying and sending healthy thoughts his direction and the others injured that day. How this all plays out in history, we can’t know yet. Maybe someone is reading this in the year 2045, and it will all make sense.

Why am I writing this now? Because I need the reminder, which is very obvious but I want in words anyway, which is just to try. A reminder of how much happier I feel when I go for it, even when I don’t know what I’m doing. A reminder that writing 15 versions of this one stupid blog post over the course of a month is mostly a waste of time. Just jump in. It’s not always complicated. It will never be perfect, but it’s almost irresponsible not to try at this point, and to keep trying, over and over.

I continue to walk the thin line between fighting for a cause I whole-heartedly believe in, and surrendering to circumstance and the things I can’t control. I’m always learning , that a sick life can be a good life too–and I hope can still become a person I can say I’m proud of in the end. It’s easy to cross over too far one way or another, but if I stop trying, I’m a gonner. Sometimes I fail. There are many (funny) stories where I blow it. But it feels so much better to get out there and blow it, then to act like a bitter teenager on the sidelines, thinking pain was never a part of the deal. This is the reminder; try. You always feel better when you do, so do.

Health, Happiness, Tryin

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:

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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

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

Brain Not Work So Good

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

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

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

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Me Writing Crap

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

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

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

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

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

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

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How fun is this dudes art? Check him out.

 

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

Let that simmer.

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

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

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

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July