The Reward and the Wake of ME/CFS Advocacy

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation?  She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

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The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

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Yours truly, My Sister Amelie, Linda Tenanbaum, Mama Gelpi, and my Aunt Amy. You probably know her.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

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I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

Health, Happiness, In Solidarity–Happy May 12th

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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

2017 and Falling Off the Edge of the Earth

*I’m making a concerted effort to keep these blogs shorter and “more digestible.” This is not that blog. Last year was a book all on its own and  I feel the need to fill some gaps where I was unable to write during certain parts, so I’ll do it now so I can move on to the present. Apologies it’s not shorter and sweeter. Next time.

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The beginning of 2017 had begun so auspiciously. My health was in the “good enough” category. Not great, but not terrible. I don’t even know if the word ‘good’ fits with any precision here, but looking back at the beginning of the year, it was so much better than how the year was to end.

The hopefulness, the call to act, the feeling that I could help change things related to a health crisis all felt visceral and achievable. Whenever I felt down about something, disappointed, or discouraged, I constantly asked the same question: Why not me? I’d waited on others for so long, expecting there to be a happy ending soon enough. But you grow older and you see that things don’t happen unless people believe in the possibility of things changing, and if those same people don’t believe they can contribute to this change, in whatever way small or large, things remain the same. When we stop waiting on others, and decide no matter where we are in life, there is always something we can do, we will add light to a place of darkness. We can try. And I can tell you from personal experience, many failures, some successes, that trying, regardless of outcome, feels a whole hell of a lot better than waiting. 

I think it’s why we may sometimes take the longer route home, even though we know there’s an objectively quicker way to get there—but that shorter way involves stop and go traffic the whole time. Most of us would prefer to just drive, on a road that feels open, than sit in a tense car and yell OH COME ON and beep our horns (as if this does anything in congested traffic).

I hadn’t expected the outcome that came out of writing the petition. Yes once again, I”m talking about the petition. But this stuff matters— to me, and to millions, and I need to quit pretending this is a blog that will always (or ever) be extremely exciting or cover my super fun travels to Brazil! I am after-all, documenting life and a chronic disease and a hopefully changing political landscape that I am attempting to contribute to. I try to keep things light-hearted and fun when I can, and highlight the sometimes tragic hilarity that comes from this weird, unconventional life I live. That’s the creative challenge. But the aim of truth telling is tied for 1st in what’s primary, because there has been so much, well, non-truth telling. (I’m looking at you, psychiatric club of England!) I also try not to make it so much about me, but that’s a joke, because this is me, writing about me, and also M.E. (Myalgic Encephalomyelitis— you get it.)

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In early January I met with the LA State Director who works directly under Senator Bill Cassidy. I sat with him for two and a half hours, giving him the whole spiel. At the end, I showed him the petition, which had amassed roughly 35,000 signatures at the time, and it seemed to surprise him. That led to him arranging an extremely brief “meeting” with Bill Cassidy, (literally a 3 minute talk in the parking lot between meetings, where I said as much as I could, and handed him a printout of twenty pages of comments where sick people had told their stories in condensed bursts trying out for help. Some of them were heartbreakingly short and to the point. “I have lost everything. I am bed bound. I’m not living anymore.’ As he was being ushered into his car to his next meeting and his team shouting that he was late and to please hurry, he shook my hand and looked me in the eye saying “I really would like to know more about this.” But politically things were a mess at that time. Is that a redundant thing to say? No longer even necessary? I was told he would be in our state (Louisiana) for roughly 30% of the year or less because his help with the Healthcare Bill in DC was very much needed. So I met with the State Director, but it just inherently felt like such a good thing. Any politician empathizing with you, listening to you and looking you in in eye feels successful all on its own. I realized we were all looking for that. We just want to be seen and heard, and I want to continue that mission.

Attending the “Storm on DC” in May where a large group of us-advocates, advocacy group leaders, those sick with MECFS and those who loved them— met with representatives of more that 150 congressional offices, which felt like movement in the right direction. Besides that, the catharsis I found in meeting other people who were living my kind of life was invaluable. It was the human reminder that I’m always trying to tell myself, that I’m always replying to others when they reach out. We really aren’t alone, even if we’re by ourselves. There are many of us, and yet isolation dominates. This sentiment is perhaps the hardest to remember, the most difficult to convince your heart is true.

A good family friend arranged for me to meet the Majority Leader, Steve Scalise, where we all sat down, and I attempted a summarized spiel of MECFS and the train wreck it is. More importantly I introduced this disease to a man who’d never heard of it, which is typically how these things go. Then I told my story in fast forward, as something he could connect to. Maybe something he might remember. The three of us did a little trouble shooting of ideas. We didn’t have two and a half hours, bur he too wanted more time to learn about and think on this. I left him with short and digestible literature. When we left he shook my hand and I looked him in the eye, hoping he would remember me. That somehow in the future, he’d have some faint memory of a girl he talked to—explaining a crisis underneath everyones nose that needed immediate addressing. A continuation of being seen, being heard, asking people pointedly,”Can’t we do better?” 

We tried. I tried. And regardless of what obvious or immediate changes were made (not many, but a few important ones), this all felt very good. To try. You know when you’re doing your best and when you’re slacking. Nobody really has to tell you.

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Unfortunately after my bump of health in the spring, I seemed to start on a downward spiral to crap town. I fell in love, which was energizing, but the burst of it didn’t last very long. In late summer we tried ketamine infusions to try and get a hold on my chronic pain—in my legs and my head/face. It was basically insane. And sort of a Catch 22, because I think if I didn’t have ME, I would’ve been able to handle the 3 infusions per week for two weeks. But the physical demand of doing anything 3 times a week at that point was extremely difficult. Strangely, it improved the pain in my legs, but made my head worse. I’d get a horrible migraine after each treatment and woke up the next day like it was back for vengeance. I’d have a day to recover before we’d go in for another treatment and do it all again. For someone with this illness, this kind of protocol just isn’t all that possible or as it easy it might be for others. At any rate, we went through with it, because if I was going to endure the physical hardship and psychological insanity, I wanted to really go for it. I wanted to know explicitly if this would work or not, and not do some half-ass attempt. Apparently the first 6 treatments and the time in which they’re given is crucial to their effectiveness. I would try anything that might help the pain, get me off meds.

It was an intense two weeks, and I’ll go into much further detail on another post because there is a LOT about that course of treatment, physically and spiritually, and not a lot of personal experiences written about it out there.  I believe it could have worked for the nerve pain in my legs if my mysterious stupid head didn’t explode at anything new we tried. I crashed from the exertion, the migraines became a given, and it just became clear it wasn’t working. Wasn’t going to be possible or given a real chance to work. So we paid a hefty financial and physical price, but at least we tried, and we always will attempt things that promise at least a good possibility of lessening my pain and eliminate the need for prescription drugs that are harder to fill than buying a machine gun.

This was toward the beginning of August, where afterward my functionality was already in decline but it continued and seemed to increase its rate of downward spin. Particularly in October, where I seemed to fall off the earth.

The pain doctor changed one of my long acting pain meds to see if we might get a better hold on the leg and face pain. I had an extreme reaction to it. On day 3 the “skin crawling” I had felt at first turned up to a 10. I’d wake up at 3 am to my legs and arms squirming, kicking, flexing— feeling like a kinked hose with full blast water trying to flow through it, impossible to keep still. My muscles would be flexed without my telling them to. My fists would be clenched and my toes curled under my feet, then pointed, back and forth on repeat. Moving felt “good” in a weird way, only because remaining still felt impossible. But I was so exhausted anyway, all this muscular strain helped nothing and only worsened.

On day 4 came an episode that we can’t really explain. I was at the vet with Monty when I was already feeling rough but pretty suddenly felt I like would faint and as though my insides were melting. Luckily it’s across the street from our house, so I cut appointment short, trying in spurts and sputters to explain what dysautonomia was to the vet techs as I sat on a bench before the 60 second ride home. Have you ever heard of POTS? “Like frying pans?” I came straight home, laid down on the couch, drank peppermint water for the intense nausea and iced my aching head. Suddenly I needed to vomit. I wrapped myself around my moms toilet where the bathroom spun but I could only spit. I prayed to puke because the nausea was so immediate, making my face hot and the saliva in my mouth swirl, collect at my lips and pour out like a faucet, but nothing.

I laid on the floor of her bathroom, stuttering and having major issues speaking. My muscles kept clenching, all of them, would become rigid, and my teeth chattered. If I diverted my attention away from breathing it became hard to breath normally. It felt similar to the symptoms of SVT but I was not in active SVT, or I’d taken an atenolol just in case I was, and it would’ve worked by the time I lying on the tile. Something else was happening. I had to focus on just taking normal, deep breaths, trying to stay calm. I was twitching and my muscles were doing whatever they wanted. When I finally stood, unstable on my feet, my parents each held an arm and tried to guide me to the bed—but every time I moved I felt insane vertigo and urgent nausea. Even looking too quickly with my eyes to the left or right caused a flash of the same symptoms unless I lay still on the cold tile floor. I laid around the toilet again and tried to be as still as possible, ignoring whatever my body was doing on its own. My parents brought in a pillow and blanket and Monty laid next to the bathtub.

My body took turns twitching and shaking and going rigid, and I stuttered horribly when my mom asked me questions. The lights were too bright, so I laid there just as the last of the sun was setting. I knew she was conflicted—do we take her to the ER? But we’ve both had enough experience there—no one has heard of my disease. They would look at my prescription list and long, convoluted history and none of it would add up to anything, understandably. (We hardly mention ME/CFS in med school text books, and the printed “treatments” are so outdated, some still state “hysteria” as a cause. If anything, going to a bright, loud, crowded ER would make it worse. She used to be a nurse and was monitoring my vitals the whole time anyway. I told her “Please, no hospital.” But I think she knew I was in better hands at home anyway. I felt awful. Not just physically, but that it had come to this. That my mom had to see me like that. That the place you’re supposed to go for medical help is not a place we can go. All of it felt so backwards, so wrong. And it was just beginning,

It took four hours for the episode to finally dissipate and for me to turn back into normal Mary. Clearly I couldn’t stay on that med, which was incredibly disheartening, because it was the first one that provided relief for both the nerve pain in my legs that I’ve had for eight years, and the mysterious head/face pain that we’ve been trying to figure out for the last 5. No luck. But that med, that pile of gold in a bottle that finally eased the pain for both, was also a med violently rejected by my body, so I was forced to quit it. I cried and cried. I felt angry at my own body. Why wouldn’t it accept something that was finally helping it? It’s hard to hold out hope during times like that.

I was horribly crashed the day after the episode, but we had to go back to the doctor the next day and get my medicine sorted out. Another hour car ride, (thank you Mom and Marc) and we weren’t really told why I would have that kind of reaction—which seemed to fit the bill for serotonin syndrome, something I have had at least one episode of before. But they shrugged it off and agreed it was best to just return to my old regimen. The “good enough” regimen. There was only one huge problem that remained:

The side effects of that new drug I tried didn’t go away when we stopped it. It was as thought a switch was flipped. It began in October. I am still dealing with extreme restless legs and arms and toes and hands (which for eight years prior were 90% under control with lyrica), and my skin crawls as if I’m being tickled from the inside if I don’t take a different med to calm my whole nervous system down. The symptoms are insane without this new med.. SO, just to fill yall in, that was the last quarter of 2017, and I can say objectively, IT ROCKED.

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I am telling this story because it’s just one example of how messed up this situation is, in so many capacities. I have had to see four doctors in order to get the medicine needed to calm down the symptoms caused by a medicine I tried for a short while in October. The DEA is coming down explicitly hard not just on patients but on doctors too and if they’re prescribing any kind of controlled substance. Their licenses are threatened, and they aren’t allowed to treat their patient the way they might normally choose— because an entity that knows nothing about medicine is interfering with their medicinal plan. But more importantly, I’ll never forget what my primary care physician said to me in a recent visit while we continued to try and sort all of this out, as I squirmed like a a worm on the examination table, about to run out of the medicine that was helping keep things ‘calm’ but I was forced at the time to try and ween off of. He’s a very good doctor and extremely educated in Dysautonomia, which is a huge part of MECFS. He said “It’s better for one or two doctors to be prescribing all your meds, not six or seven.” I agree with him. And how nice that would be, if only it were possible.

This is what MECFS patients mean when they say there’s no place to turn, no safety net. A person with cancer goes to the oncologist. A person with diabetes goes to the endocrinologist. Someone with heart disease, the cardiologist. Where does the person with MECFS go? The literal handful of specialists, if they can afford it? And where it’s difficult to fill any prescriptions because the specialist is out of state? Local doctors have often heard of Chronic Fatigue Syndrome, which they often conflate with Fibromylagia—an illness one of my male doctors actually used AIR QUOTES when he said it aloud, as well as “Intersticial Cysitus”. I wanted to laugh high pitched and say with my own air quotes “Yeah, you’re a “really good doctor.” It’s such a joke. We are so misinformed. So uneducated when it comes to such a debilitating disease that is not new and is not rare. I’ll leave the numbers out of it, I’ve said them so many times before I believe they’ve begun to lose any real meaning at all.

By Christmas, as you may guess, I was not doing well at all. It was my favorite time of year and it all felt so tainted— the normal seasonal colors were drab and as I looked out the window of my moms car as she drove me home from yet another doctor appointment, I couldn’t help but cry. It was drizzling and ugly out, and nothing felt balanced or fixable. Just let it out Mary, it’s OK to be upset, my mom comforted me. But I was upset at even being upset. I wanted to be cheerful and play Christmas songs, but everything felt covered in the haze of this disease, the amount of time it took not just from me but from my parents who have lives of their own, and my lack of ability to advocate or do anything I wanted—it was all waring on me. On us. Everything felt like it was falling away.

I was extremely depressed and hadn’t seen friends or felt like I’d done something truly social or fun or meaningful for too long. Everything revolved around finding waking up to and finding physical relief, and then being fought back on every effort we made. I can’t count the hours we’ve spent at Walgreens, arguing that insurance should cover a medicine, or being told that they didn’t have this or that medicine in stock, so we could wait three days or drive an hour to another Walgreens that does. Once we were told they had 19 pills, of my prescribed 120. “I can give you the 19 now, but you’ll have to go back your doctor (an hour away) and get a new prescription written in order for me to fill the rest when we have it back in stock.” Someone. Please. Explain. Everything was a battle. I grew so tired of fighting, for everything. The disease is hard enough, but the logistics of the disease is often just as hard or harder. It is truly, I say this with total conviction, a full-time job. That phrase It shouldn’t be like this would play itself in my head a lot and it was hard to disagree. But what can you do? Keep going. Always keep going.

We had a good Christmas, and thus far I’ve been able to get the treatments I need in order to remain mostly comfortable. Thank you, Dr. Patel, and thank you Dr. Klimas. You truly are heroes to someone like me. I wish the government would leave you alone—-unless it meant funding for research, then come on in yall!

It’s a new year, and for now, I have what I need. (Thank you MOM, and Marc.) How I wouldv’t survived the last part of 2017 without you, I honestly don’t know. I feel decently functional right now and for that I am incredibly grateful. I just felt I needed to write out a bit of what happened last year, because behind it all, I hated that I wasn’t able to devote more of my time to advocating. I was in bed or my house somewhere, thinking of grand ideas that I was too weak to carry out. But enough of that, it’s in the past. I believe this year will be different as I’ve said before and we’ve already hit some major goals, which I will spill soon. So be on the lookout yall and hang on. I know how discouraging it gets, how isolating. I know how hard it is to hear “You’re not alone” when you’re by yourself. But it is the truth. We are getting there, we’re not alone, and we still need outsiders help.

Mom, Marc, Monty, Family: thank you.

Health, Happiness, & Good Things To Come

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

Me Write Now

So, it’s been… an interesting month. The viewing event of Unrest in California was really incredible. I have so much to write about all of it, but given that my brain has a time limit of functionality lately, I’ll just say quickly the most important part now: watch this movie. It’s a really, really well done documentary and surprised me in ways my mashed-potato brain can’t convey at the moment. But when my mind is more functional I’ll get further into it. But watch it–iTunes, Amazon, Google play. Find it, rent it, learn a lot– but also see some incredible stories. I strongly recommend it. It will not disappoint.

Here’s the trailer.

I think my brain is still in recovery mode. After the flight home, it wasn’t just a body crash but a brain crash.  For whatever reason, air travel has become increasingly overwhelming for me–mostly due to the noise. There is such a wide range of stimuli you’re constantly exposed to when you fly. Visibly, audibly, socially, physically. But for me it’s sound. I seem to have lost the “buffer” we were born with that smooths things out for us to hear, and the typical noises–converging gate announcements, people on their cell phones, the sound of the plane engine, the automatic flushing toilets, the sound of the captains “status update”–they all feel like an assault to my head. I know it these seems like small and petty things to bring up. And when I was well I never would’ve noticed or been bothered by things like that. But now they are actually painful. By the time I make it home…I’m wiped. I haven’t mentally really felt the same since we returned. I’ve been in an either hyper-sensitive mode of everything at once, or a hazy, sap-paced state where trying to complete a thought is as arduous as an old man trying to get out of a hammock.

The fact that I’m dealing with some major emotional whacks (a breakup, for one) has only made things go more haywire. In fact I think it was a lot of emotion mixed with regular cognitive overload that sort of took things over the edge. That and the insanely loud cacophony of those damn automatic toilets. It feels like my brain is going to shatter and shoot out of my ears when they flush. If I end up in hell, those flushing toilets will be the soundtrack. Just so we’re all clear.

When I think about my cranium I picture that delicate glass slipper being forced on the ugly step-sisters far-too-large foot. There just isn’t enough room in there for everything to find it’s place and get processed normally or in order.  It will suddenly enter an erratic state and my thoughts start flying from every direction dealing with any and every topic, related or not, and instigating every kind of emotion in a matter of seconds. It’s like a hail storm of mental calamities flying at high speeds up there, and I’m just trying not to be get hit. Orrr, it moves so slowly and stuttered I can hardly say my full name out loud without pausing to remember like, my middle name. Soo, cognitively…still in recovery. Please stand by.

Trying to avoid your own fast-paced thoughts and emotions, or extremely slow ones, isn’t really possible. Like Tolle says, you don’t evade them, you learn to watch them, and remember you’re the one observing them, but you aren’t the thoughts themselves. He’s right, but dang, it ain’t easy. Peasy. In fact it’s crazy hard. But, we try.

Yesterday, I realized I had spent 2 hours writing and rewriting the same paragraph. One! Who knows what that paragraph was even about, I had to quit when I realized I took a break and was looking for my phone charger in the refrigerator. I truly could not think straight–and that led to a whole cascade of things happening and a really fun couple of hours on the floor of my moms bedroom where she brought me back to reality. Thanks mom. I don’t know what that paragraph was about,  probably about feeling lost on top of feeling like butt. BUT, no matter the finished outcome, I can say with a good amount of certainty that it wasn’t good enough to warrant two hours of work. I was just stuck. It would be funny if after two hours the end product was like:

Me Mary. Me sick. Times hard. Heartache hurts. Time heals wounds. Time moves forward only. Time is taking a very long time. Hurry up time! God! My mom is hero. Head and face feel like human punching bag getting lots of use. Monty is therapy walking on four legs. Friends matter. Life tough but onward we march. Keep going. It gets better. Keep going. Keep going. Wait stop! OK keep going.

That’s basically it in a nutshell. Anybody want the 5,000 word version? Yeah, didn’t think so. Maybe I’ll talk in cave-woman all the time. It’s pretty efficient I must admit. I think I just have to rest my brain for now, but I didn’t want to feel totally defeated. Writing has always been an outlet, and I’m not letting the disease that shall not be named take it away. So I figured I’d write this post, not read back over it, and just let the world know: Yes, you are kicking my ass right now. But I’m still here. Still going. Bring it.

Health, Happiness, Me Try Hard

*Small note to the world, I was kidding when I said “bring it.” Please don’t bring anything else, we’re all full over here. OK? I was joking and I just wanted to make that clear to the universe. That was a joke. No more shit, K? For real. Cool. Peace.

 

 

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!