Restlessness, Unrest, Doin Your Best, Zombies

For nearly  a month now, I’ve been writing a blog that would normally take me a few 3-4 hours to write and a few days to edit, if I were in “regular” enough health and other things were ordinary. I catch myself in a strange predicament, so I’ve abandoned that last post, which may have been THE BEST THING YOU EVER READ because I can’t damn well get more than a paragraph written on a good day, and the editing has become arduous for numerous reasons outside the one I’m about to describe, but to the point where writing, my one constant among chaos has taken a further hit. And since I’ve learned, for me, writing a simple status of things in my own life is easier than trying to put some thesis about technology together (one day) I’ll just bring you up to speed, because I’m not sure how long it will be like this. 

If you read in my past blog, you saw I’ve been fighting some switcht that seemed to turn on a charged degree of restless body syndrome and skin crawling, which have been part of my symptoms for years. With a switch of pain medicine that didn’t seem to improve anything and cause the hugely uncomfortable side effect of skin crawling and an insatiable necessity to move my limbs ,Unfortunately, when we stopped the medicine and returned to the regular regimen, for some reason, the RLS (or restless body syndrome + skin crawling) did not, which turned up a conundrum. 

We’ve yet been unable to find out what “fliped the switch” that made these symptoms turn on with the cherry on top of skin crawling, and why stopping the med that seemingly caused it to start wouldn’t naturally cause it to turn off. If anything the symptom has stayed the same and many, many restless days and nights become worse, and well, hellish. Waking up to squirming legs and little charges running through your body with your skin crawling on top, Is Foldiers in your cup! Kidding, its awful. I think I’d prefer pain. And since the pain has continued, now I get both, yeah! But if i had to pick between the two, I’d choose pain. It’s discomfort is different from that of squirming limbs, electrical bolts and your skin feeling like the audio equivalent of nails on a chalkboard, if that makes any sense. Besides all that, for whatever reason, the medicine I’ve been taking for nearly a decade that has controlled the symptoms 90% of the time, seemed to just suddenly stop being effective. It’s as if this clinically same symptom is originating or set off by something else in the body, and that has rendered my old meds useless. 

Where I am lucky, is that we found a medication that has been effective in controlling these symptoms, which truly, at times, feel more tortuous than pain. Where I’m a little unfortunate is that the medicine which calms down the lightning/snow/hail storm going on inside me, is the same medicine I’ve been taking for sleep for the last 2.5 years. At night it has done me wonders, since for years, even with the help of a sleep aid, I rarely made it through a full night a of sleep, saw a lot of sunrises, and often had tangible nightmares and at times became trapped in night terrors. (NO fun) Luckily this RX has not only worked best for my quality of sleep out of all the meds I’ve tried in the last decade, but it also seemed to reduce my nightmares, or at least made me sleep so well, I don’t remember them, which is, you know, fine by me. The obvious problem is that when you’re taking a pill so incredibly effective at helping you sleep, but you’re now taking it at 10 AM…you’re going to run into some issues. Like, um, what’s that word? Functioning, that’s right, you’re going to have problems functioning in daylinght. But without the meds, life is even less functional with misery stirred in. I wish I could say I were stronger and I could do it without the meds, but believe me, when you feel like you’re being tickled from the inside of your skin and your legs wanna kick and squirm and flex outta control when you just want to sit or lay and some strange shock or charge is making its way from head to toe frequently, it’s just not doable. You’re fighting the whole day. 

So, I went from misery and fighting, to z o m b I f i e d and tired and unbalanced (pysically) because that’s some of the med’s effects, which I”ll add, are HUGELY more tolerable than life without them. But, taking a sleep med during daylight, as I’ve explained, is draining me. I move slower than before. My cognitive ability feels like it’s being run by a fat hamster with heart disease. I can feel the effects that I know are from the meds, but it takes just the thought of one morning in January to make the “pick your poison” choice easy.

At a bitterly coincidental time, I was told to ween off that pill by my doctor because the FDA had been coming down hard on physisicians and who they prescribe to and how many doctors are prescribing to one patient could compromise their license. Sweet. I’d have to wait to find another doctor to prescribe it before I could refill it (I’ll write more when I’m not so z o m b i f i e d)  I found myself stuck between a few pills left and a hard place. The only thing relieving me from the misery was this med, but because of new regulations, only certain doctors were allowed or were choosing to prescribe it out of caution. I was prescribed some other conventional prescriptions to control RLS (Miripex, Bacloven and others) which did nothing, and my Lyrica and then Gabapentin had for whatever reason ceased to worked. Now I was stuck. 

I tried to talk myself into the belief that slowly weening off the Central Nervous Depressant and changing to the Bacloven that I could rid myself of this new, annoying, persisting symptom if I just believed hard enough the new meds would. But by the time I had taken the last pill and it was all up to the bacloven, I went 1.5 days and did what I guess we could call, ” possibly acceptable” but not at all “controlled” on the symtome scale. The morning I woke when I knew the last of the weening med had left my body, I was in hell. Really. I thought if I couldn’t get rid of this feeling, which was the truly inescapable task of needing to crawl out of your skin and also throwing all your limps off, I could see how and why people ended it. I know, that sounds extremely dark, because it is. But when you’re in that much extreme discomfort, you finally see why people could have it in them to do something that seems so far away and impossible in your own world. I wasn’t in hell, I had help and luckily one doctor to prescribe a partial dose until my appointment with the neurologist. Saved. 

But that morning for those hours where I tried everything I could think of and could not find relief, I thought of the many who came before me and those now who experience similar symptoms to a much higher degree and do not have the safety net of their health systems or family to fight for them and find them relief of their pain or quell their discomfort. This letter from a past advocate, one I never knew until I read her letter, who experienced unspeakable greater pain and hell than I did, and lacked the help of her countries support of MECFS more or maybe as much as the US had me thinking how in fact fortunate I was. At the least, I had a family that would step in and demand or find a solution I wouldn’ve have been capable of myself.

Another thing stuck with me. When leaving one of my 14,000 doctors, one who is actually very good and informed particularly in the filed of dysnautonomia (a huge aspect of ME/CFS for most) he said something. “You need to be getting as ltitle medicine as possible from as few doctors as possible, otherwise, you and I will be flagged.” I felt such anger on that ride home. This is where so many MECFS patients are stuck. It’s suspicious of us to have too many doctors all prescribing different meds, and yet, there’s no one doctor for us to go….This disease multi-systemic, and most patients, if they can make it there, have at least 5 different doctors monitoring different parts of their malfucntionng bodies. How on earth would we break this puzzle without research and education to show these medical entities the truth about a disease it simply does not undestand, and who some are plainwright just choosing not to look at.

I always try to take as little of the meds as I can because I know they will wipe me, which would make a lot of people, then find a way to withstand it or another solution. We’ve tried magnesium, checked iron levels, yes I have lyme disease, I take multiple supplements and I’m pretty sure I can’t The Shape of Water-it and just live in a bathtub for eternity, so for the time, this is my limited option to escape the suffering of this strange, insidious symptom that we just can’t figure out. Last month I saw Dr. Klimas, (my hero!) who is running a whole scope of tests, and all our fingers are crossed that we may find answers.  Not everyday is spent zombified, but my mom recently told me she was worried because every time she came over I sounded like a zombie and not myself and I said “maybe that’s just cause you come over at zombie hour” and she said that couldn’t be ruled out. But we both knew.

So, I try to get rid of the guilt that there is so much more I could be doing but that I am held back by from the very medicine that makes life bearable, but that can also make it very a slow moving, zombie-esque and unproductive experience. We can only do what we can do. When you’re already fighting “fatigue” (a really shitty word to describe a symptom of a really shittily named “chronic fatigue syndrome”, hmmm) a med like this is like 4,000 cherries on top. I definitely believe that either my body will very slowly adjust from whatever through it out of whack in October, or that I actually will be able to ween from these meds and get back to the thing I love more often—writing, advocating, and creating. 

And by the way, check this out! If you live in Colorado, please come to this advocacy event; it’ll be a good time with a good cause. The Gelpi’s will be there, Grandma Bell (you’ll know soon enough) and lots of others. Not Monty, sorry to disappoint 90% of readers :(

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Read more here about the event. And read more HERE for the write-up on our stories in The Daily Sentinel. Thank you Anne Wright for the article and for everyone who has helped make this event possible, which has been many, but especially Jordanna, (her dad) and my Uncle Mike who thought he was retired. Haha, sucker! Love ya.

Health, Happiness, Keep On Zombie-ing On

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Miami, Migraines, Diners, Doctors

I am sitting at a booth in one of those themed diners in a shopping center, adjacent to the clinic where I saw the specialist on Monday and had what looked like hundreds of vials of blood taken today for more testing. I figure I should eat even though I’ve no appetite. I never trust a menu this long, so I play it safe and order the soup and salad, which is neither good or bad. I guess that’s what you’re really asking for, a meal to quickly forget.

mp,550x550,gloss,ffffff,t-3.3u2.jpgThe music is too loud in here and I find myself strangely annoyed with the gimmicky decor. License plate style plaques fill every inch of wall space boasting phrases like “Stressed is Dessert spelled backwards!” and “Soup of the Day: Whiskey.” I stop. I just close my eyes a minute. Adjust. The problem is not the restaurant. It’s me and this body I have to animate—it doesn’t fit in the world in comfortable or easy ways. It’s like dropping a wild tiger in suburbia, except maybe the opposite. It’s like trying to build suburbia in the middle of a jungle, then complaining the tigers are noisy and sometimes scare the kids. No one else seems bothered by the music.

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“Hey, you don’t belong here.”
“I might say the same thing about you.”

I don’t want to be this young and think like a curmudgeon. Better to let go. It’s because it’s 11:30 and I’m on day 9 of a migraine cycle and I’m wearing real pants. I had to get blood drawn and I don’t normally exist before noon. Mornings are just constantly, reliably painful and tough.

Everyone has days where life feels so tired, so repetitive, that you want to hit snooze and wake up under some alternate sky where there is no weight to carry. No gravity, no effort required to move. Where everyone looks each other in the eyes. We listen. We don’t say the words “Sorry” followed by the word “but…” or “if”. Our hearts resonate with each other, and our heavy bodies have shed like snake skin, like the useless, heavy weight they’d become. There is a lightness in every capacity.

Tolle says this alternate side of the sky I am referring to is possible here on this side. And I believe he is right. But it takes so much practice and learning and presence. Presence. How easy it is to walk into a cheap diner and complain about decor. ap,550x550,12x16,1,transparent,t.u2.pngThat kind of observation lacks creativity. Not to mention, it’s very counterproductive to complain about these things when you’re already feeling down. So I’ll tell you what I like about this costumed diner. All four booths in my vicinity are filled with at least parties of two people eating, and all of them are talking to one another. None of them have their phones out. A phenomenon! Particularly this couple across from me.

They are in their 60’s, and somehow it seems obvious they’ve known each other a long time. I could be wrong of course. They could be divorcees who met on ourtime.com and newly in love. But it’s not the sense I get. In my mind they’re in their Act III of their marriage with grandchildren they have pictures of on their phones to their friends at Bridge. I like that they haven’t run out of things to say or lost some kind of delight in the simple pleasure of each others laugh. They seem to laugh a lot, casually, throughout their light hearted conversation and this feels so good to watch. I always used to fear I’d marry a man and eventually he’d lose interest in me and I’d find his stories boring and then we’d be at a restaurant eating one day with nothing to say to one another. As though there was nothing new to discover about the other, or that we’d lose curiosity in the way each of us experienced the world.

But I know that only happens when we’ve decided we know a person completely and with total certainty. And if we’ve decided that, the issue is not the other person.”The human mind mistakes its opinions and viewpoints for truth…but it is no more than a viewpoint, one of many possible perspectives. Reality is a unified whole. Thinking fragments it into pieces.” Tolle says a lot about the “thinking” mind, and that it’s very useful in our world. But it’s also “very limiting when it takes over your life completely. It’s only a small aspect of the consciousness you are.”

Sometimes I seek the daily, thoughtless things about a person with such aggressive interest I think I might be dumb. Their calendars, notebooks, what they keep in their cars. One of my favorite hobbies is to take apart a guys wallet, piece by piece. All the useless receipts he saves. The frequent customer cards. An old crumbly picture, maybe. Movie stubs. Concert stubs. Their license—are they smiling in the picture or does it look like a mug shot? What made the cut for making it into the billfold and what didn’t. All tiny stamps of a person and his non-sequitor, paper trail of places he’s been. You can have the same fun or more going through a woman’s’ purse. Many clues in there. But these are little traces so few people see. Instead we go to dinner and say “Uh huh and what do you do? Oh interesting, tell me more about your boss. What a jerk!” I think first dates should be silent a exchange of wallet for wallet, or purse for purse, or wallet for purse, whatever. You get the picture.

My last boyfriends wallet, unless I’m remembering incorrectly, was a basic brown leather wallet that seemed to old for him and contained some concert stubs, because he was a music guy and not a whole lot else because he had a straightforward way of being in the world. A wallet was a thing to hold money and his license. But maybe more memorable was the night we went to dinner and left Monty and his dog Gracie home. When we returned, his wallet that he’d left on the coffee table had been chewed. His license, a credit card, social security card, and a one dollar bill perfectly torn in half littered the living room floor. We both loyally defended our own, claiming that “100%, my dog would never do that.” I thought it was kind of funny—a mystery we’d never know the answer to. Maybe it was Monty (it wasn’t), telling me Run! This thing isn’t gonna work! Mayday! Owell. Fun while it lasted. I still have the half chewed dollar.

I could say that the two buzzing gnats flying around my side salad are concerning, but you can basically always reduce these impulses to complain or feel disturbed by something or “talk to the manager” to nothing, because when you start to break them down, they just don’t mean all that much. We forget that so much of our devoted focus, particularly when it’s negative, is essentially meaningless. I am one person, and I chose to eat at a diner where children under the age of 12 eat for free between noon and 3. There may as well be a sign that says FREE BUGS. This isn’t the RITZ. The meal costs $10 and the waitress is nice.  If you’re always making noise about your tiny discontent, you just become a human gnat. We should ask ourselves what our questions or actions or statements are intended to do for five minutes before we go running to every manager. It’s so often just a thoughtless impulse. Gnats! We could just as easily forget about it and move on with the day.

I take an Uber home, and I find myself alone in the back of Ubers quite often. ‘Often’ is a relative term. I’m appreciating that the driver isn’t trying to engage in conversation. “It’s hot out!” “Yes, it is hot out! Also, I have a doggy!” I’ll tip him more for that.

Miami is a picturesque place, and I like the sidewalk traffic. Watching the world through 179389-3908867d8a204eebbcef4215613a5da0.jpeg  the window feels so much better than TV–and no commercials. Bonus! I see a couple kiss while they wait at the crosswalk. Then they smile and she says something that makes them laugh. I love seeing people kiss. Creepy? Maybe. I just like that kissing exists in general. There’s traffic, which is another easy thing to complain about. Tolle says complaining is one of the ego’s favorite hobbies. (Also being right.) But I’m in a quiet car. All I have to do is sit here, one of a few things where I’m actually quite skilled. Many beautiful things pass us by at a stop and go pace. I try to imprint the sights on my brain to take home with me.

I try presence. Just being aware of all my senses. I am grateful to be out in the world at all, when so often I am indoors. I try to remember how lucky I am that I was able to come here. What a gift it is to see a doctor who understands, who listens and looks you in the eye, who can help me find answers. (Thank you Dr. Klimas!) That I have my brother and his beautiful family to stay with and help care for me. That it’s time together we wouldn’t have had were I well. Yes, I have a body that feels like a decomposing pumpkin at times. And I actually feel I may look like a decomposing pumpkin at times. (See video below) But so many moments to be grateful for. So many gifts. Count them. Keep counting. They add up faster the more awake you are.

Keep fighting. Last year was hard. I believe somewhere in my depths, this one will be better, no matter the directional trend my health takes. I know we’re getting close. I tip the Uber driver and leave feedback. “Thank you for the quiet.”

Health, Happiness, Counting

All awesome artwork by Eugenia Loli

*Bonus*: I’m on Day 9 of my migraine cycle! Here is a clip of yesterday morning. It was kind funny in that tragically comical way.

Teach Me Somethin, Tolle! Today: The Stories We Tell Ourselves

“The primary cause of your unhappiness is never the situation but your thoughts about it.

Be aware of the thoughts you are thinking. Separate them from the situation, which is always neutral, which always is at it is. There is the situation or the fact, and here are my thoughts about it. Instead of making up stories, stay with the facts. For example, “I am ruined” is a story. It limits you and presents you from taking effective action. “I have fifty cents left in my bank account” is a fact. Facing facts is always empowering. Be aware that what you think, to a large extent, creates the emotions that you feel. See the link between your thinking and your emotions. Rather than being your thoughts and emotions, be the awareness behind them.” (pg 5)

This is a small passage but it’s pretty rife with depth and possibility that I feel I could discuss it for hours over coffee and a crumpet, whatever a crumpet is. But it’s an interesting premise. Given that this is a blog mostly about life through the lens of being sick, I have to relate these things to my own experience. Sometimes I think, this is such an eye-roll. A bore. I want to tell others stories and look at these things through their lens, but I not only don’t have that access, I don’t have that right. I only know truly what it’s like to be in this world as me, Mary, and so I use what I read and try to apply it to my own life experience. Surprisingly, it helps. It’s funny how reading passages like this, you can think of other people and be spot on by saying “Yep, Dianna totally does that.” But the more conscious approach is to look at it and become aware of the ways in which you’ve “missed the boat” this same way at times, or catch yourself doing exactly what he’s (Tolle) talking about.

The part about making up stories is perfect, because it is surprising how often and how quickly our minds resort to this tactic, I guess as a mechanism of just not looking in or at ourselves in any meaningful way, (because that is both difficult and sometimes painful) but always pointing the finger outwards. It evades personal accountability. But telling stories has long been something we all do, and I can think of so many times I’ve done it, then facepalmed myself in the forehead later thinking, What was I thinking? I literally just made up some scenario in my head, and believed it, and was absolutely completely wrong. Someone doesn’t call back in a timely manner. You don’t like their response to something. Your jeans are missing and you’re convinced maybe they accidentally took them and GOD DIANA WOULD SO DO SOMETHING LIKE ACCIDENTALLY TAKE MY JEA…..oh here they are… in my closet…”

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It’s crazy how fast down the rabbit hole we go, convinced that Diana didn’t call us because she just doesn’t care about our friendship anymore, and you know what, maybe she NEVER did?! Maybe I should send her a mean text! “Oh, her grandma is in the hospital and she’s been away from her phone…”Oh, oh Diana, I’m so sorry to hear that. What can I do?” How stupid our egos can be! And what good story-tellers! They are always looking to be wronged, which is why they can start a fight about anything, literally anything. Frozen Yogurt? OH I’LL TELL YOU ABOUT FROZEN YOGURT! Um OK Diana, calm down. DON’T TELL ME TO CALM DOWN!!! *turns into the hulk, flies away*

It doesn’t mean we aren’t sometimes wronged. Or we don’t sometimes deserve to feel hurt. All of that will happen. It’s more about response to painful stimuli that human behavior just seems to get wrong. We are clearly, still learning.

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Hey, this water is pink!
OK, so we’re really good at blaming. And great at creating scenarios in our head that aren’t actually true except in our own self-made ego reality. (Which isn’t actual reality) And we’re really bad at self-reflection. I say “we” because I’ve seen this actually happen in action. To me, to others. It’s crazy! Never seen it? Open your eyes and wait for the Holidays to come around or wait in line at Walgreens or get stuck in traffic, you’ll find plenty of it. Passive aggressiveness. Blaming. Gossip. Anger. Insensitivity. All the yucky stuff that makes things which are supposed to be fun, not so fun. And we’re all guilty. It’s easy to want to point a finger at one person, but if you’re offended or participate, even in tiny ways, you’re part of the dance too, my friend. And I have done plenty of dancing.

The other part of this passage that I think is so important is the difference between facts and stories. Saying “I’m totally screwed” is a story, like he said. But so often we get ourselves so upset, so anxious, so depressed about things that are going to unfold one way or another, and in that present moment, you’ll address them. But if you’re too far away from this present moment, always stressing about the future, you will never enjoy life in its natural form–which is always happening in the now. It doesn’t mean you just mosey around until “the future arrives.” If you’re truly present in the moment we call Now, you’ll be ready for whatever happens, which you have absolutely no way of knowing how it will unfold. He also says this:

“To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally good or bad, but to let it be. Does this mean you can no longer take action to bring about change in you life? On the contrary. When the basis for your actions is inner alignment with the present moment, your actions become empowered by the intelligence of life itself.”

Duuuude, deep stuff. It’s easy to be sick and tell myself stories like “This isn’t fair.” “I can’t catch a break.” “It wasn’t supposed to be like this.” But all according to what? According to my version of what I thought my life should look like–none of it based in the reality that my life is. When I am in true stillness, and I’ll reiterate this time and time again– if there is something crucial missing from my generation, and the baby boomers will tell you we don’t know what hard work is and we’re ultra sensitive and have all kinds of nice things to say–what my generation is truly missing is stillness.

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It is very hard to self-reflect in a noisy, demanding office, a loud home, when you’re constantly with people, when you refuse to be alone, or as soon as you have solitude or quiet, you turn to your mobile device as some kind of virtual company. So few look at time alone as an advantage to reflect. Or do whatever you want. Pray. Meditate. Read. Just try to be still. Try not to get on social media and see if you can be comfortable, alone with only you. People think “being busy” means being important, but it really doesn’t. Try doing nothing. See how long you can do it without outside stimulation. Then tell me you wish you were sick and didn’t have to go to work. Hah. I always loved that line.

I don’t think you have to be absolutely quiet or alone in order to obtain what Tolle is talking about. If you are awake in these crucial moments–at work, with your kids, at the dinner table, then you’re effectively reaching consciousness. Take time to acknowledge what you have and the good in your life. It’s all there; it’s up to us to open our eyes and see it.

Health, Happiness, Reflection :) (:

*Awesome, awesome artwork by Sonia Pulido

Teacher Tolle Tuesday

johnholcomb-1I’ve been meaning to create a segment for a very long time where I take passages from Eckhart Tolle’s books and put them here for the world, all thirteen readers of you, to see. ;)

There are certain passages from all of his books that I have underlined, highlighted, circled, starred, tabbed…you get it. And they all come from separate times I’ve read the book. The passage I’m about to transcribe here comes from a book of his called Oneness With All Life. I fear even writing that because it’s an easy way to turn someone off to it–there’s so much “new agey” crap about solving the mystery of life and “finding happiness” that the more details I give I’m afraid the more you’ll be resistant to reading it. I can understand that, there’s a lot of people claiming to have LISTS and PROGRAMS and FIVE EASY STEPS promising you happiness that it’s almost depressing. Happiness is not some trophy you come upon and clench when you’ve truly done it. Don’t we know that by now? How can we not be blindingly aware that no, money doesn’t buy you happiness. Duh. Look at your rich friends or family…do they seem insanely happy? No. Of course they don’t. They’re just often unhappy living with SUPER awesome amenities. But they do get to fly first class and I always tell myself if I’m ever rich, THAT’S where my extravagant purchases will go to…traveling first class. I’ll remember with a shudder the horrors of the main cabin. See? Already spoiled. Complaining about the incredible GIFT OF FLIGHT.

I remember in an airport once, I saw a book called the Happiness Project….which was all about following these set of rules, because as many do, this woman had found herself married, two kids, a job and loving husband, and yet not really happy. So she began the voyage. And developed some program to follow to be happy. And guess what? She seemed to find happiness! And maybe she really did. But reading it I couldn’t help but think that it just felt a little obvious and maybe a little gimmicky. I believed she was truly trying to find happiness, I just couldn’t buy that these were the ways to “get there.”  There aren’t rules to being happy, people love knowing what to do, it helps them feel in control, and that alone assists with “happiness”. Which is why when things come up unexpected, we just lose our minds because WE DIDN’T PLAN FOR THIS DEBORAH! There’s a lot of people who will promise you can be happy, and live an entirely great life, if you just tweak a few things. And sometimes they’re right. But that self-help section is bursting at the seams with many more who don’t seem to know, and we’re gobbling it up for a reason: because we all want to know. TELL ME!!! I’ll do anything to escape my misery!!! Wait what? No I won’t do that.

The truth is, according to the modern mystics,  in order to achieve our own inner level of peace, we have to look deeply at ourselves, not others. We have to change ourselves, we have to see ourselves, become conscious of our life and our way of seeing things, our patterns we’ve been taught–to react and stress and yell, when really none of that is necessary. If it rains when it’s supposed to be sunny, it’s going to happen whether you lose your mind and freak out or say, oh well, what should we do now? And if there’s one thing I’ve witnessed time and again, it’s that when someone is freaking out because things didn’t go “right”, and other people are not freaking out and casually just moving along because um, hi, we don’t control the sun, THAT. PISSES. THEM. OFF. Interesting, isn’t it. That’s the ego, clinging for life, and now not just angry that its raining but that OTHER people aren’t angry it’s raining. It’s ridiculous. But it’s the way it bees, and it doesn’t have to bees that way. I just know that we should be incredibly leery of promises that your life and your happiness can be changed and attained all in five easy steps! I’m no Einstein, (REALLY!) but I know when it comes to happiness, more importantly, when it comes to true inner peace and joy, there are no shortcuts. Life is really hard, and you can’t evade the pain. But you don’t have to create extra pain for yourself. The “extra arrow” as my friend Daniel always talked about. The story we tell ourselves about the facts. You’re going to experience pain, but you’ve got to do your work to figure it out, find the hidden seed of grace, and find how to grow bigger from it bot let it swallow it you whole.  But a lot of our pain is self-created, and I do it to myself all the time. Convince myself of some madness or offense, only to find out later I was TOTALLY wrong and an idiot for believing what I did. That’s how we can help ourselves. Ignore ourselves. Haha. Ignore our thoughts, pay attention to our inner self–two very different things.  There’s no “List of “10 things to follow and you’re all set!” So burn that book, if it exists, and I”m sure it does.

Tolle and a few other mystics are very upfront about truth and about how to go absorbing what they’re putting out there. But they are of such a different breed–they’re not writing about how to “get happy.” Which is what people want. 5 steps to get happy! They’re writing about how to be conscious. How to save yourself from causing undue harm or pain to yourself or others. And when you’re conscious in the world, you’re honest, with yourself and others–you’re honest when you’ve messed up, when you’re lucky, in pain, grateful, loved, sorry, and when you love. When you’re conscious and honest, you can’t lie to yourself about what the true source of pain is. You may not be able to know what it is, but you can definitely know what is isn’t.

SO, every morning, I read from Tolle’s repertoire of wisdom—books I have read over and over and over and I will continue to do so. Because all of them elicit further consciousness every time you read them. I feel similarly about Michael Singer, Marianne Williamson, and especially Gary Zukav’s Seat of the Soul. I’m sure there are more I’m forgetting. But I have long days. I don’t leave the house a lot. I have to learn how to harness the normally spent mental and psychological energy that would go outward into the world, into tasks and work and conventional effort, at home, in silence a lot, in solitude a lot, with no plans, no control. The biggy. This is not easy and can be a great source of pain, more than the illness itself. So, on Tuesdays, we’re gonna take Tolle’s words that really stick, with a cup of tea. And I’ll just write them here. Maybe they’ll stick with you too. But please don’t give up on this post because I’m rambling. I’m gonna stop. Here’s Teacher Tuesday’s Lesson One, and it’s one of the more profound and lasting passages I’ve read. SO here it goes. Also I just jumped right in to the center of his stuff so we’ll have some preliminary terms to go over. We’ll do that next Tuesday. I’m still learning. See you then.

People believe themselves to be dependent on what happens for their happiness, that is to say, dependent on form. They don’t realize that what happens is the most unstable thing in the universe. It changes constantly. They look upon the present moment as either marred by something that has happened and shouldn’t or as deficient because of something that has not happened but should. And so they miss the deeper perfection that is inherent in life itself, a perfection that is always already here, that lies beyond what is happening or not happening, beyond form. 

Accept the present moment and find the perfection that is deeper than any form and untouched by time. 

The most important, the primordial relationship in your life is your relationship with the Now, or rather with whatever form the Now takes–what is or what happens. If your relationship with the Now is dysfunctional, that dysfunction will be reflected in every relationship and every situation you encounter. The ego could be defined simply this way: a dysfunctional relationship with the present moment. It is at this moment that you can decide what kind of relationship you want to have with the present moment. Friend or enemy?

The present moment is inseparable from life, so you are really deciding what kind of relationship you want to have with life. Once you have decided you want the present moment to be your friend, it is up to you to make the first move: Become friendly toward it, welcome it no matter in what disguise it comes and soon you will see results. Life becomes friendly toward you; people become helpful, circumstances cooperative. One decision changes your entire reality. But that one decision you have to make again and again and again–until it becomes natural to live in such a way. 

Health, Happiness, Tolle Teachin

**Awesome artwork by Sarah Elise Abramson

Exshoes Me?

Someone explain to me why these shoes exist.

Why are they 400 dollars.

Why are they award winning.

Why is 300 dollars considered on sale. But they’re on sale you guys! SALE! 
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I’ve got a lot more writing to do, and mindfulness to be mindful of and reading of things that warrant being read. But all I can think about is these loud pom pom shoes (their words not mine.) I keep picturing if a clown/magician hybrid was at a birthday party and said “Hey, wanna see what kind of footwear I can produce, merely by farting?” THESE would be the shoes. And they’re not even that bad. In fact, they’re kind of funny. And I appreciate a sense of humor in fashion. Not to mention, in the marketplace of women’s footwear, (namebrand anyway) $400 is almost nothing, which is insane in its own right.

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

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

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

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

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

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

Health, Happiness, Fight On

My Super Duper Serious Farewell Video to 2017

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

 

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

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

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

Spanksgiving

Sometimes it’s not easy to recognize the things in life that deserve gratitude. When life is smooth sailing, everything can become so repetitive, so routine, that you almost operate on autopilot. You come to expect things will be a certain way and forget that nothing is actually promised or guaranteed. The bottom can fall out at any time. Most of us have experienced or seen that happen to someone, and it doesn’t always make sense why. It doesn’t have to I guess.

On the flip side, when you’re going through a particularly tough time, it’s unsurprisingly hard to find reasons to be appreciative. Most people have endured a “When it rains it pours” time in their life, and usually during the rain, it feels like some kind of cosmic punishment. It’s not exactly easy to take a few minutes of stillness and consider the things and people you’re grateful for when life is kicking your proverbial ass. And yet there are always things, always people, rare moments or a single act of kindness that if you think long enough, will start to emerge. If nothing pops up, keep thinking. It will come.

I wouldn’t count this year as one of my easier ones or best in health. There’s been a lot of learning and experiences that I wouldn’t write on my “List of Pleasantries” if I had a “List of Pleasantries.” There has been pain and heartache and a lot of feeling lost. But I know that even among all that, when I take even a minute, once a day, and write down the things I’m thankful for, I am less likely to get pulled in or lost in my ‘story’. I have to continually remind myself of the good things in my life and the people I am lucky enough to love and be loved by. Some days it’s easier to remember than others.

It’s not a denial of pain, which requires its own outlet. It’s just a deeper look beyond the surface of larger things at work. It’s seeing things and people in the spaces, the gaps, the small pocket of happiness you might have missed before. My more challenging experiences this year have actually illuminated the ways I’m fortunate and I have felt more gratitude now than at any other time of my life. It’s almost counterintuitive, I wouldn’t have expected that. But pain can do all kinds of things, it’s a shame it has to hurt so much. Jeesh.

Expressing gratitude has surprised me in how it shapes my outlook when I keep it in mind. I’m always trying to at least identify one thing to be thankful for. Even if its “I’m grateful this crappy day is over,” it’s still acknowledging something that encourages growth, momentum, that phrase I’m always repeating in my head: Keep going. Keep going. 

I don’t write this as though these things are easy. It doesn’t take much for me to slip down the rabbit hole of feeling bitter about where I am in my life, about being the age I am and still requiring help, at not getting the life back that I had before. I miss my friends. I miss wearing real clothes. And I become afraid at what my future will be.

Every year that goes by I become more scared that I’ll never be an actual adult. I’ll be in a permanent state of need. I’ll be 80 and my 120 year old mother will be feeding me cream of wheat and we’ll fight over which show to watch.  But I don’t like the idea of anger or bitterness being the last things I think of before I fall asleep or when I wake up. So I work hard to see past the outer experience and at what it might be allowing to happen underneath. Being bitter about needing help from your parents can just as easily be gratitude for having parents that are willing to help you. It’s all about perspective, and taking the time to see and acknowledge things on the other side, and there’s always another side.

I think sometimes my mind tries to process my whole existence at once, which is mentally overwhelming. Duh.

It’s OK to acknowledge when things suck, and being sick all the time sucks, we can say it. But it’s really only when I jump into a future I can’t know, when I try to gain control over something that isn’t possible that I get into trouble. Sometimes I find myself stressing about things that may not even happen, or things 20 years down the line. What? I don’t even know what I’m doing in an hour! Here in the present moment, there is space for things like gratitude to exist. When you’re panicking, there’s hardly room to breathe, let alone be thankful that there are montages of people falling on youtube and it made you laugh till you cried.

If I my mind gets too carried away, goes too far down the rabbit hole, I give it a slap on the wrist, a mental spanking. And I tell myself to look. It’s not hard to see that I have the things that matter. If I can just stay present, take things one at a time, which oddly enough is sort of required when you’re sick, I can stay awake. I can still see the things I missed before and treasure simple times. There will be chaos and wreckage and things will fall apart, but it seems like the vital things are always somewhere in the quiet aftermath when you take time for stillness and look. The things that matter are there. I guess they never left in the first place.

My favorite author, Haruki Murikami wrote something pretty incredible that I play over in my mind a lot:
                                              Pain is inevitable. Suffering is optional.

A pretty simple and beautiful way of considering life, yeah? I think so too. I’m working on not suffering on top of pain. And I have a small but incredible circle of people in my life who help me see what needs seeing or remember what I’ve forgotten in a moment of madness. I am grateful for so much, even when things are hard. It helps to remember.

Health, Happiness, Spank You

Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations

 

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.

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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!

The Campaign

OK, so I can’t actually link the above image that says CLICK HERE TO SIGN to the page where you would actually CLICK SOMEWHERE TO SIGN. Blogging problems amiright? In other news, you can click here to sign.

If you haven’t heard, I’ve begun a campaign on change.org. I’m petitioning the head of the National Institute of Health (Francis Collins) and the Secretary of Health and Human Services (Sylvia Burwell). If you have heard, and you probably have because I posted it everywhere for a while there, I do apologize for the redundancy. But for the first time, it seems like the right people are at the helm of the organizations that can immensely influence the potential for way more research (funds) for ME/CFS. I’ve written previously about the shaky if not scandalous history of this weird disease and the mishandling of it (i.e. neglect) on a federal level. As a result of being dismissed and grossly underfunded for so long, treatment-wise we are exactly where we were back in 1987. That was the year my mom got sick, when the disease was hardly even heard of. But it’s a new age, and there are a lot of people fighting out there, and this is just one more way of attempting to be heard, influence important change, and help increase awareness. Plus Monty pressured me to do it.

I’ve never thought of myself as an activist, and I still don’t really, but for the first time I’m feeling the strange pressure to make something happen. Anything. I wrote the campaign on a day when I was feeling really sick but also really hopeless and discouraged. I thought, I can’t sit here and feel bad about this anymore. I had to try. It’s interesting because on one hand, I can’t rely solely on the discovery of a cure to make me happy or my life complete. I forget that even healthy people have a hard time. Life, as discussed and agreed upon with most friends and family, is just really effing hard. It just is. Even if by all accounts you have everything one would require to be “happy” or feel whole. It’s so easy to just assume that everyone else has all their shit together–that they’re drinking champagne on a yacht somewhere with good looking friends and laughing, or having family day in the park with their soul mate and three perfect children. Is that a thing? I don’t know.

32336913-vacation-travel-sea-friendship-and-people-concept-smiling-friends-sitting-on-yacht-deck-Stock-Photo
“Isn’t life easy?” “Oh my God I was just thinking how easy life is!!”

But I’m guilty of this. Many times when I’ve felt deeply the challenges of my experience, I’ve felt even more wounded by the idea that the rest of the world is at a party that I’m too sick to attend. And that is fantasy. Sure, there are definitely people out there who have it way more together than me and are probably experiencing more joy than I am in the current era I’m going through. Even so, health, marriage, children, careers–these don’t necessarily equal happiness or fulfillment. Everyone is carving out their own unique path through this chaos, discovering who they are and hoping to live a good life they can be proud of in the process. I’m not positive, but I think “happiness”, or maybe I should call it “inner peace” or contentedness, develops when you are operating out of your true self, that inner person that we catch glimpses of when creating or carrying out our passion or holding the hand of someone we love. It can be anything, but I think there is person within all of us, a 100% unique super-person made of ultimate consciousness that we’re all striving to become. And when we follow the whispers of that super-person, it feels right. It feels stable among a lot of instability.

As I grow older, I think the biggest revelation I’ve come across is that everyone is figuring this thing out as they go. They’re putting on their pants in the morning and going to their job or raising their children or poaching an egg and some part of them has their fingers crossed that they’re doing it right. That they’re doing what they’re meant to. And somehow it can easily seem as though everyone else knows absolutely what they’re doing, where they’re going, and how they’re getting there. But even these people can’t be completely certain. There’s no real way to know, no standard form of measurement that says yep! you’re doing it right! We’re all living this particular round of life as each of our weird selves for the first and time. All we can do is our best, and follow that invisible thing that usually presents in the gut, telling us to turn left or right or that you’re talking to a crazy person or to get the hell out of some place. There’s an inner compass there, and we probably don’t listen to it enough.

My “path” the last five years, which continues now, has been finding a balance; finding a way to manage and tend to this illness and still construct a life that I like; one where I can sustain loving relationships and do some good and make a meaningful life I can be proud of. The balance is also about not letting my life or identity revolve around the illness. This is hard because truthfully, it effects everything. It just does, it should be called Pain-In-the-Ass Syndrome because that’s what it is and you kind of become one out of necessity.  But I know there is a way to use it to become someone better without letting it define me or my life. I know in order to grow and become the most conscious, full version of myself means experiencing every last drop of what is thrown in my path, including the insanely hard stuff, like life-altering illness. My mom reminds me of this when I get really down. Try to take everything you can from this, because these are the unique teachers that help shape who we ultimately become. And it matters that we grow into ourselves, that we become who we’re meant to. Otherwise we’d all be born with the same talents and passions and personalities. We are so awesomely diverse just to begin with, innately, and our experiences through life are even more unique, and this is what informs our distinctive selves for the better, if we engage it whole-heartedly as an opportunity to grow into who we’re meant to be. I don’t write that as though it were something easy. It’s one of the hardest things in life: to accept pain and struggle with open arms and surrender to it as a pathway to being better, more conscious, to living a more fulfilling life. Maybe that’s how to know if you’ve done it right..if you ring out the rag of your life at the end and not a drop comes out.

This post was meant to simply re-post the campaign, but it’s been a tough few weeks mentally and physically. What am I saying? It’s been a tough year. And there’s always words that need letting out. Otherwise cobwebs gather up there. Anyway, last week there was such an amazing response from family and friends, (and total strangers), to signing and sharing the petition, and that was truly humbling. I cried. Like a lot. I don’t know if this will work. I don’t know if it will get enough signatures to get the attention of important people. I just know I felt an ache on a particularly hard day that craved a bigger change and I had felt it for a while. So this was a place to start. I also wanted to remind people suffering out there that there is a lot of action being taken toward working with these agencies and finally getting the support and attention that the disease has needed for so long. Don’t lose hope. We WILL get there. Wherever there is. The good news? We surpassed 1,000 signatures! What does that mean? Technically nothing, except that 1000 people took the time to sign it and comment and share, and that is an awesome feat in itself, and I hope we can keep it going. I will post the campaign again here, and maybe find a better spot somewhere on the homepage where people can sign. I’ll figure something out. In the meantime, let’s all put on our pants, (or PJ’s if you’re sick) and pretend we know what we’re doing. In other words, let’s try. I have to remember to try. And you do too.

And then sign the campaign.  Pants not required.

Thank you, thank you, thank you so much to everyone who has signed and donated to help circulate this campaign. I think my sister is responsible for half the signatures herself that she reached out for. She’s a better campaigner than me, maybe I should hand it over. Thanks Amelie! And thank you to all of you. It truly means so so much, every single signature.  I will of course keep everyone updated. Mostly, I’m filled with humility and gratitude for all the support my family and I have received. Keep it going guys, I can’t tell you how thankful I am, except I just did and I’ve said it 10 times now so I’ll stop. But it’s really nice for people to feel that their voices have been heard, especially sick people who can’t get out there and fight, and I think this campaign is a way to facilitate that. OK ENOUGH TALKING GOD. Here it is. Sign it for Pete’s sake!

Health, Happiness, Pants

Below is the link if you’d like to copy and paste the campaign to send in an email. Otherwise, just click here and sign it. Thank you. I love you. A lot.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure?recruiter=12447733&utm_source=share_petition&utm_medium=copylink