Cutting Down Trees Won’t Stop the Wind

77969e290ad545088eeb06c11ef0ce88When I was little, I thought wind was created by trees. I watched the branches bend and break sometimes, as I felt the currents move over and past me, blowing my hair around like I was a passenger in a convertible. A very strong force, what those trees could do. It wasn’t so long before I learned that wind existed in the desert. Whoopse. Naturally I then learned about currents and the true science of wind. Trees were indicators that it was windy, but were themselves were not creators of the wind. Duh.

So, how does this tie into the thinking around a disease I have? And secondly, why am I always writing about this damn disease?! So boring, Mary. But hey, this is my notebook after all. But mostly because there remains a lot of thinking to be done around this subject. The public’s view in this case matters, particularly the medical establishments. *Inconsequential anecdote, it’s very windy out here! It’s also really hot and I’d rather write indoors, but Monty made me come outside. In this case, the wind helps.

So, imagine for a moment that wind is a disease. It’s not so hard to do—sometimes you can feel it wholly, you can watch the effects of its existence in past and present form, you can even predict it to an extent, but is of course itself, invisible. That’s the start.

A powerful and controlling school of thought pervades many minds surrounding this disease; it confuses the behavior of trees as the cause of wind. Or it says that the reaction of trees to this wind is maintaining the wind itself. In other words, doctors—mostly psychiatrists, a lot of them British—are thinking the way I did when I was four. OK six. You get the idea. 

This dominant school of thought looks at the symptoms of this wind, some of which can be quantified through tests, some of which are subjective (self-reported) in the absence of diagnostic material and a lack of conventional biomarkers, and a lot of it hiding in plain sight somewhere, yet to be found. We’re getting closer, but that’s beside the point. 

Instead of seeing tree branches swaying violently as an effect of wind moving through them, this school of thought sees the behavior of trees as having something to do with the cause or sustaining of it. A common case of conflating cause and effect. Hence, their idea is to cut off the branches. Or in other cases, to just chop the tree down. So they do it. They take a chainsaw and remove the branches, one by one, and then stand outside next to the stripped down, naked tree, or in more unfortunate cases, the mere stump that remains. Outside, what happens? A blustery wind snakes up through the air, kicking up the leaves around their feet then letting them settle, blows their hair around the way a roller coaster does. Sometimes it makes a haunting, high-pitched howl. Still unseen, there’s no disagreement that the wind is making a nearly aggressive presence. In spite of all that chopping! Other times it arrives as a gentle breeze. In any case, they witness the wind despite their efforts. And for the little value it’s worth, the tree stumps says “Just an FYI, I um, I can still feel the wind.” The tree stump is generally ignored and a bird then craps on it. 

But they try other versions. They tell the tree stump to quiet his thoughts, imagine no wind is blowing. Or accept the wind, and live life as he always did as a tree…with branches…and leaves, despite not having those things anymore. He’s been reduced to a tumbleeed and being asked to live as a 30-year-old flourishing Live Oak. In spite of feeling like a tumbleweed, he attempts to live outside in the wind. He’s told to go slow, be cautious. But it doesn’t go well.

The wind blows on, the psychiatrists scratch their heads. They go back to the drawing board. Cutting off the branches, chopping down the tree, and still these powerful gusts of wind! It’s hard for them to wrap their heads around, and they’re not the only ones. This is a complex wind with a lot of strange behavior and variables. Particularly, standing in the middle of the desert where a wild wind blows, so forceful it’s difficult just to walk, none of it seems to add up.

Frustrating as a disproven hypothesis can be, it doesn’t have to be that way. It’s still an answer. A real scientist knows you go back to the drawing board despite you’re hypothesis being “wrong” or “right”, or more accurately, true or not true. You don’t throw it out, but by ruling out one idea, you make more room for the true one to emerge, right? It’s all useful information. Knowing what works and what doesn’t. For instance, Well my humble colleagues, it would appear the behavior of wind is not based on the behavior of trees. Let’s look into one of a thousand other ideas we have. It would seem that’s how progressive science would go. 

But…

Alas…

No.

Back at the drawing board, they can’t give up the ghost. They’re stuck on the idea that trees either make the wind or maintain it somehow. They’re convinced that stripping the trees, changing the trees thoughts, encouraging the tree to do things he’s hardly capable of, even if just slowly at first, will eventually make the wind stop. In the meantime, forrest are demolished, the wind blows on.

Hopefully, one day, this school of thought will be carried away like a fine dust caught up in a large gust of wind and patients with MECFS won’t be subjected to it again. Like in Aladdin when he drop kicks the magic lamp containing the evil genie into some other universe. It’s not that what they’ve found can’t help the people with this disease. Every finding is useful in it’s own way. But something like psychotherapy being touted as a treatment for this disease is as effective as cutting down forests in expectation of the wind to stop. It won’t. The studies that say they have are chock-full of issues, and the patients speak for themselves, if we’ll listen. Typically ruling out one theory means pursuit of another. It also means letting go, if you’re really seeking answers and aren’t attached to outcome. 

This BPS model has dominated the whole scene: the narrative helped shape the media coverage (and vice versa) that CBT (cognitive behavioral therapy) and GET (Graduated Exercise Therapy) were helpful treatments for those with MECFS.  It informed policies and advocated for “treatments” that don’t work, for a disease causing immeasurable harm to millions of people. And yet, they can’t let it go, convinced somehow, if we trim the branches like this or hack off the top like that, eventually this will work! If we continue to pursue this idea some perfect way, eliminating the tree will eradicate this wind. It won’t. They have worked this idea to death.

Specialists of this specific wind will tell you, will show you, that’s not going to work, because the wind is due to underlying geological processes. The people, the TREES, having their lives destroyed will tell you the same thing, but their voices won’t be heard as loud or clearly. Doubt has muffled their voices for decades. As such, there has been a lot of loss.

Like Peter Paul and Mary Sang:

The aaaanswer my friend,
Is blowin’ in the wind,
So pleeeease stop
Decapitating treeeeees

Very slowly, this historically dominant narrative is finally starting to change, despite opposition, which has doubled down on their bet that CBT and GET are actual treatments and helpful for sufferers. They will disagree with what I’ve written here, but that is nothing new. The BPS model, (biopsychosocial model) has reigned long past what it’s warranted, but in an historical absence of biomedical research and answers, it’s been easy for that to happen. We know better now, we know so much more, thus it’s far time we let that model go concerning MECFS. And for the sake of sufferers everywhere, we definitely don’t tout it as a treatment, when we know that this “treatment” can and has made patients worse. For many the damage has been irreparable. 

We are getting closer and closer to real answers, thanks in particular to organizations like the Open Medicine Foundation and the handful of specialists who’ve dived deep into the heart of this disease. But this organization runs off the charity of the public. I’ve said it time and again, but real scientists and doctors working as hard as they are, shouldn’t have to protest on the weekend so they can get their work done throughout the week. This is the whole reason for institutes like the NIH, which the public already pays for. 

The paradigm is shifting and I’m grateful for that. But charity alone is not going to pay for what is needed in the way of biomedical science. When you continue to pursue a model that’s collapsing in on itself, that’s half of how you’re harming sick people—by taking away already scarce resources that could be allocated toward research that has an actual chance of providing answers, and putting them toward a method that’s already yielded results. Those results aren’t the answer here, but there is one. There many be many. Answers lead to treatments, and hopefully, eventually, one day a cure. We need resources to go there.

I believe that will happen. I can only hope in the meantime that we hear and validate patient voices, recognize more humbly what hasn’t worked, and that we use past research to lead us in a new direction of what will.

Health, Happiness, Save the Trees 

 

**Please add your voice to the petition if you haven’t, especially if you’re an MECFS patient. Your story is important. We’re very close to 49,000 signatures …Good stuff yall, good stuff. THANK YOU.

https://www.change.org/p/increase-research-funding-for-me-cfs

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

Homeopathic Migraine Fix

When you don’t have your medicine, or your medicine isn’t working, and you’re caught in the throes of the diabolical, all-encompassing shitstorm known as a migraine, this could help save you from the depths. It has relieved my mom (fellow migraine sufferer) and I on many occasions. This was a trick she learned from a neurologist in the 80’s when she first became ill and suffered lights-out migraines, for which there were no prescription migraine drugs at the time. (I cringe) Sometimes she would have to endure the pain for days at a time in a dark room or end up in the ER when it could not be controlled. It was a rocky road no doubt, but this trick she learned helped rescue her from some bad ones, and when she shared it with me I was surprised to find it alleviated my terriblest horribliest vomitiest of migraines. And it’s pretty easy to do. I just figured I would share it with yall and if it helps even one person out of the fiery pits of migraine Hell, well then, we’re all winners really.

Here's what a bathtub looks like, in case you're too sick to remember.
Here’s what a bathtub looks like, in case you’re too sick to remember.

1. Get in a hot bath. The hot water helps draw the blood down and away from your head. If you can’t get in a bath, try using a heat pack around your feet or soaking them in hot water, but I find baths best. Try to sit upright even though all you wanna do is lay down and die. I get it, but sitting up will redirect the blood flow faster. And when you’re under attack, speed counts.

2. Wrap an ice pack around your neck. If you don’t have one, use whatever you can find in your freezer– frozen peas or strawberries or deer meat from your uncles hunt last year. All is fair in love and migraines. Wrap the ice in whatever form around your neck at the base of your head. The ice helps restrict the blood flow to the head, which is where your blood vessels are spasming, and redirect it downward. Think South. You want to send everything South.

3. Drink hot black coffee. Not some frappuchino crap either. You don’t want the sugar. If you can’t do coffee, I imagine a strong black or green tea could offer the same result, but I have only ever used coffee, so I can’t really endorse that one. If you’re like me you get crazy nauseous and often vomit during a migraine, so eating or drinking anything is the last thing you want to do. But just start with one sip. This is your way out. Keep taking small sips, and soon you’ll feel the first tinge of relief and find your stomach has begun to settle. I am unsure what mechanism exactly is responsible for this relief, but it’s there. Perhaps it’s stimulation of digestion plays a part–not sure. But more importantly, it’s a major help in quelling those haywire blood vessels in your brain-effectively serving the purpose of an OTC or RX migraine drug.

Caffeine works in an interesting way. There is a molecule called adenosine that is responsible for dilating the blood vessels in the brain. Caffeine mimics this molecule and competes with it at the receptor site. Once displacing the adenosine, it gets in like a ninja and constricts the dilating blood vessels– the ones causing that UnGodly pain that no one should feel. But we do. Welcome to life homies! Not to mention, caffeine has long been used in conjuncture with pain medicines as it aids in their absorption, particularly acetametaphine. So in the least, it can give some your pain relievers a boost if you take them. There. Now you’re cured.

It’s all about the power of three here; one alone won’t cut it. The triple threat is your best bet. I am of course not a doctor clearly, and everyone is different; it may not work for all. And obviously miracle drugs like Maxalt  and the like are more convenient and don’t require a bathtub. But when you’re desperate for relief, try this. In my experience the the proof is in the pudding. It has without a doubt saved me from immense suffering on a few occasions and my mom on many more, even when the strongest meds have failed.

The sooner you react to one the better, so act quick. Get naked, get ice, drink coffee. And once you’re able, drink a lot of fluid. Dehydration is found to play a big role in migraines, so replenish your electrolytes and restore your fluids asap. Especially because you probably puked them all up. On that note…

Good Night and Good Luck,

Mary

Thanks mom!

Living Masters

Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.

I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.

40 pounder
Unfortunately I think my brother later used this fish as bait.

Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.

It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I  had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.

By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.

Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.

The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.

I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,

We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” 

I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder. 

In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.

Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.

Health, Happiness, Masters

How To Come Home

I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege.  And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow,  the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion. And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am.  But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense.  I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

Stay tuned.

Health, Happiness, Home.

The Plague.

I feel the need to begin here by expressing my deep gratitude for the response to my last post. As usual, my decision to publish a raw and somewhat sad update was not without hesitation on my part. My preference is always to write in a happy and funny and optimistic tone, even if the words I am writing are happier, funnier and more positive than I actually am. In some ways it’s therapeutic, and in others it’s a challenge in creativity and authenticity. As much as I’d like my writing to point towards the fun and the funny, life is not always that way, is it? Sometimes it’s overwhelming and can feel too heavy to bear. I resist putting words out there like that for maybe the same reason I never liked to cry in public or ask for help when I needed it. It means, gasp, I’m not perfect. And that’s what the ego fears a lot. 

Over these last few years, the pride that held tears back and forced a facade that was untrue began to crumble. This writing project entered the picture when those superficial layers were starting to shed, and consequently this blog has some really vulnerable things in it, which can leave me uneasy. At the same time, I can feel that my most honest posts are the ones that connect most with strangers. (Duh) And that doesn’t mean they have to be in the tone of “True Life: I’m Sick All the Time.” Humor can be just as much genuine and communal. It’s the one I prefer, it’s just not the one that always is.

Anyway, it’s a battle inwardly and materially, but I just really need to extend my thank you to everyone who received my words and reciprocated with such loving support and encouragement. How can we lose faith in humanity when across the world, people sit down at a desk to uplift and strengthen a stranger with words? It’s a two-way street yall! I’ve been reflecting on so many responses from people I will never know, and that alone is healing. On a form level, it makes me trust in the direction that the blog is taking–one I did not design. On the formless level, it had me feeling so much better despite being so sick. That transaction served such a greater purpose than “You should try eating more JuJu Beans!” And I attribute that to all of us. This doesn’t feel like a solitary project anymore. So thank you. That’s all I’m saying, THANK YA VERY MUCH.

Now, onto the plague. I’ve been puking my guts out. But that’s not the plague I’m talking about.

My siblings with their partners and children rented a beach house in the Florida Keys last week. It happened to be the same weekend as the wedding of a long-time good friend. For two months I went back and forth. Beach house or wedding weekend? (Assuming I could move) I could always go to the beach and fly home for Saturday night and make it to the wedding just in time for the festivities, right!? But with the way I’ve been feeling, my unsteady ability to sustain, my mom didn’t even have to tell me with her eyes this time. I knew I couldn’t do both. Or maybe I could, but the price would be big, and these days the price of choices like that are not just gargantuan but scarily long lasting. Crash days have turned into crash months, and the basic goal is, Don’t do things that could set you back so far. 

Back and forth I went, and it was tortuous. It always is; I do this all the time.  Both choices seemed correct and incorrect simultaneously. My indecisiveness is one of my largest sources of anxiety. I won’t get into the details of why one choice was better than another, there were many pros and cons to both. But often when it comes to my immediate family, they’re the default decision. I don’t get to see them a lot and they’re my lifesavers after all. They’re my blood bro! After my brother called me a few days before the trip, started describing the waves and the weather and a hammock outside, I booked the ticket and felt confident momentarily that now I didn’t have to suffer. The decision was made and now I could relax. I guess.

“Indecisive Girl” by Carli Ihde

…Until I saw my friend who’s wedding I would miss and then saw all my old friends who I rarely see that would be there. And all the shit they gave me, it was more torture. What have I done?! I blew it! At the same time the trip was booked- let it go. You get to hang with your family on the beach. That rocks. That’s true. I got to the beach. I held my nieces and laughed with family around the dinner table eating fish my brothers caught that day. And then on day 2, I awoke at 5 am and had that feeling in my gut that something wasn’t right. And then at 5:30 I started puking up all those “not rights” I was feeling.  I had caught the stomach bug that half of my family had experienced the week before. My sister was up with the baby conveniently and she held my hair and that was nice. An hour later with my face pressed against the cold tile in between cycles of puke bursts, I moaned and tossed: “Shoulda gone to the wedding. Shoulda gone to the wedding. BLLLLURGGGH”  (puke sound)

I’m still recovering from that evil stomach bug and it’s a bummer. But the bug isn’t the issue here and I know that. I’m the problem. Shit happens that you can’t foresee or plan for. Regret and hesitation are such hinderers of the present. And we all know that the present is where peace lies. Happy is in the here and now. A lot of my unhappiness, and perhaps unhappiness in general, is being here and wishing to be there. I could easily have gone to the wedding and convinced myself I was missing a beach trip of a lifetime. I could have tried to breakdance and broken my butt. (That almost happened once) So while I lie here sick on an air mattress, in the living room, on vacation, (once again) I’m trying simply to just be here. I’m looking for the lesson. I’m trying to focus and trust in the experience I’m having instead of the one I did not. Thoughts like that are like swimming up-current–they consume and exhaust me even more. It’s just another battle that’s no use fighting.

I don’t know how long I’ve been plagued with indecisiveness like this. Though I remember even in middle school spending far too long picking out deodorant at Target, never certain I would choose the right scent. It’s been a long time. As always the first step to breaking a habit is awareness–creating a space between the routine reaction and a healthier one. Maybe it starts with knowing myself more. Trusting myself more. But maybe it’s simpler than that. In stillness the answer points to this idea; be where you are. Wherever that is.

I be sick in Miami! And it’s fine! Whatever!

Here’s something Tolle says: If you resist what happens, you are at the mercy of what happens, and the world will determine your happiness and unhappiness. …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 as good or bad, but to let it be.

Pretty good no? I’m marinading on that one. Ew, marinade. I’m still queazy.

Health, Happiness, Plagues.

Artwork: Indecisive Girl from Carli Ihde

I Wanna Get Better

This strange thing keeps happening. This clear salty liquid keeps filling up in my eyes and overflowing down my face. I’ll feel a little overwhelmed and then a sense of loss, like I’m mourning someone. The liquid is an endless spring. I imagine I’ll run out, but I don’t. I have to drink more just to supplement all that salt I’m losing! It’s pretty annoying. I’d like it to stop.

The truth is I become a fragile emotional feather when I’m sick without relief. Gradually, after day and night and day of unrelenting sickness, it just gets to you. It starts to feel like dying more than living. I know that’s a heavy statement, and I use the verb feel very specifically. I am very much alive. Although it does beg the question. At what point do we say someone is “dying?” When their suffering outweighs their relief? That’s another question another day. I am for whatever reason, very alive, although I feel very dead. But dead people don’t cry so I think I can rule that out.

The real reason it’s been so hard recently is that being sick is absolutely and utterly exhausting. It’s overwhelming. And you know what I fantasize about? Being one of the people in my life right now that gets to offer help and suggest improvements and do random kind things. I dream of just being an average person in the functioning world. If you are that person, in anyones life, treasure it. It’s truly a privilege to be able to give to others. I might not have understood that had I never gotten sick. I want to give instead of take take take all the time. I’m tired of relying on help from others and constantly showing gratitude or kissing ass because I’m often helpless, unreliable, or burdensome. I’m tired of being high maintenance. I’m tired of all the pills I take, that work about half the time. Sometimes my stomach turns at the thought of them. I’m tired of being a bad friend in terms of what I am able to offer. I’m tired of what I am made to consider my “social life.” I’m tired of calling in sick to doctor appointments. Of seeing one or two hours of sunlight on bad days. I’m tired of my nightmares and high anxiety dreams every night. You’d think such a weighed down life would find respite in the dreamworld, but nope!! I’m tired of being 29 and relying on my parents as much as I do. Tired of feeling like I have things to offer the world but am too sick and small to carry them out. I couldn’t even hold a part-time job right now. And I’d actually love to. I’m tired of the answer being that there is no answer–there is no cure. I’m tired of being tired. And I know that those I rely on get tired of it too. The effects of all this go beyond me.

I don’t believe in whining and complaining and lamenting about life. Going on that way doesn’t really move us forward. But at the same time, there is pain here, underneath the pain, and if I don’t let it out I fear it will grow and take over my already sick insides. So I have to release it. I thought maybe if I write about it, these episodes of fluid filling up my eyes and clouding my vision and streaming down my face will cease. In other words, I want to stop crying at dog food commercials.

I am someone who loves solitude, thrives off of it even. But lately it feels more like loneliness, which is the third cousin twice removed from solitude. It’s a bad feeling. The difference between the two is that one is chosen and the other feels like the forced, only option. It’s hard to swallow when you’re constantly canceling on plans. And what you’re doing instead of being with friends, is being sick and alone at home. That’s not a fun thing to go through all the time. It wears on you.

I also laugh and cry at myself because I still want to see new places and try new things, meet new people and kiss cute boys. It’s like my heart doesn’t know I’m sick. It never gives up on the idea of new adventures. And then I wonder who would want to date me that has read this blog? I sort of leave my bleeding heart in the words here, and it’s a lot. It probably looks heavy. It can be, like anyones life. I feel vulnerable sometimes knowing that people have read such personal things about me without actually knowing me at all, but it’s part of the project. I told myself I’d always be honest, including when it got ugly. And I feel like it’d be dishonorable to discontinue that just for the sake of vanity. Still though, I worry and wonder if I’m cutting myself off from potential personal relationships by laying it all out there for the world to chew up. I worry where my life will go and how in Gods name I will move forward from here when some days I can’t leave the bed. But our boy Tolle is right: all we have is the present moment. All anyone can do is here and now. And if the present moment has me weak and in bed, (like it does right now) I can’t judge it or myself. This is where I am. I am doing what I’m capable of. Some days are going to look like this:

Not tired of this yet.
Not tired of this part.

I see where I’ve gone wrong. I’ve been judging the circumstances of my life which are beyond my control. I’ve been equating my broken body with who I am and my past as the teller of what my whole life will look like. Neither are true. But my circular thoughts would say otherwise, and sometimes we have to observe ourselves beyond our thoughts and feelings–as they are often flat-out wrong. At the same time, this life is just painful and hard sometimes, and I guess it’s OK to type that out loud. Just like I will type out loud when things change and life is better. Everything is temporary.

I also know that goals never hurt anybody. And I plan to make some more specific ones and at least feel  like I am playing a part in my health and happiness. There are small things that I can do and/or avoid that can help. Well, that’s what my mom says, and she is usually right. She’s also planning to give up TV for Lent which sounds great to me. I have a few projects in mind in lieu of the crap we would’ve been watching. Creativity never hurt either. In fact, it’s often where we find relief we didn’t even know we needed.

Also, listen to this song. It’s called I Wanna Get Better by Bleachers and I know the title is almost annoyingly appropriate but it’s a really fun and happy jam. And you can’t have enough of those.

Health and Happiness and Sickness and Sadness :)

10 Books You Should Read With Me

Going to the bookstore is one of my favorite mid-day activities. I’ve been under the weather lately so it was nice to get out and see real life. I felt like Bell from Beauty and the Beast in that library singing. Sadly there’s no ladders at Barnes and Noble but it was enjoyable nonetheless. I left with my next TEN books to submerge in for however long it takes. I’m watching ice-skating and that Olympic music they play when they cut to the commercials is so inspiring it makes me feel like I could become the president. Which is even more reason to read. So here’s the list! Cue the music.

1. Where’d You Go, Bernadette? -Maria Semple

I remember picking this book up and flipping through it at my last bookstore outing and for some reason didn’t end up buying it. When I spotted those big black fly-type eyes on the cover I grabbed it immediately before I could back out. Shameful fact: I really love this books cover and that played a big part. I know the cardinal rule, but it’s also sustained positive reviews for a very long while, and Jonathan Franzen loved it and so in the pile it went. Mostly though, I loved the cover.

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Ding Ding

2. Dance Dance Dance -Haruki Murakami

So the Wind-Up Bird Chronicles was one of my favorite and most adventurous reads last year and discovering the many other “Masterpiece Novels” he’s authored I was way excited to dive into another one. I like that his books keep your imagination and consciousness running. I’ve got high hopes. I know it will be good.

3. Why Sh*t Happens (The Science of a Really Bad Day) -Peter J Bentley

I liked the title. And the subtitle. Also it was on the bargain rack. It’s probably stupid.

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Ugh, birdshit

4.Oneness With All Life -Eckhart Tolle

This is a bite-sized version of A New Earth, which I’ve read and re-read and loved. But I forget the teachings often. I go back and reread passages that I’ve felt I’ve never read before. I think it’s one of those that stay on your bed stand for life and by the time you die the entire book is highlighted. Anyway this smaller dosed version is made of “inspirational selections” to be read maybe one or two pages per day and to reflect on. Think of it more as a daily meditation. Since it’s so easy to forget the big stuff, I like to have something in the morning or before sleep that gets my head right. It’ll go on the nightstand.

 

5. The Illuminaries -Eleanor Catton

Do you ever feel like the Universe is talking to you? Well this book came up three times in three days and I took it as a sign that I gotta get in on it. It’s also a gargantuan read (over 800 pages) so it will be my friend for a long time. Or enemy.

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Also I have no idea what it’s about.

6. Proof of Heaven -Mary Curran Hackett

I’m unfamiliar with this author but crudely, I fell for the optimism implied in the title. Even though it’s a novel among hundreds of actual accounts of Heaven, the back summary drew me in as well as the first two pages and I was like “Cool, I’m IN!” and now that I’m reflecting on that I really hope I didn’t say it out loud because that happens sometimes. Anyway, this is not to be confused with Proof of Heaven the memoir by a neurologist who died, went to heaven, and returned. I’ve heard really good things and watched his account in interviews. Pretty amazing stuff. That read is next in this Heavenly genre. (Mom, you said you have it. Give it to me!) But this one was on the bargain rack. Girls gotta eat.

7. Born Under a Lucky Moon -Dana Precious

Complete blind buy. Liked the cover. Like the summary. And the price. It’s Olympic Season so I’m really going for things.

8. The Almost Moon -Alice Sebold

Moons are so #trendy! I hadn’t heard of this one either but it was a #1 National Bestseller and the author also wrote The Lovely Bones which I read long ago and really loved. And it was on the bargain rack. OK you know what? I’ll just tell you when it wasn’t. 

...

9. The Four Agreements -Don Miguel Ruiz

I have been hearing about this book for a long time now. It was published in 1997 but stayed on The New York Times Bestseller list for 7 years and sold 4 million copies. The premise of the book is simple but beautiful– in lieu of agreements and rigid beliefs we try to adhere to but often end up limiting our happiness, Ruiz suggests a personal code of conduct he calls The Four Agreements. Wanna hear em? Sure you do.

  1. Be Impeccable With Your Word.
  2. Don’t Take Anything Personally.
  3. Don’t Make Assumptions.
  4. Always Do Your Best.

I don’t really love “gimmicks” for life type of books, but this one seems much deeper and substantial while sustaining its worth for years. Furthermore, it just sounds like a refreshing and happy way to live. Can you imagine never taking anything personally? Sounds awesome. I want to know more, so it’s going on the night stand. And it was FULL PRICE!

10. The Leftovers -Tom Perrotta

OK yes it was on the bargain rack again and no I’ve never heard of it or the author. But it’s a post-apocalyptic thriller type of novel which I don’t read often (like never) and I wanted to mix it up. I threw it in the bag because while the subject matter is dark, it’s also wrough with dark humor (my other best friend). It follows the survivors in the wake of the “Sudden Departure” as they try to go on with life keeping normalcy in mind but, you know, people are missing and the world is all messy. In my small confined life, it felt good to take a risk.

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artwork via NYT book review

Health, Happiness, and 10 New Friends.

Join me won’t you?

How To Escape a Nightmare?

It is 2:31 in the morning on Thursday, December 12th. I am wide awake, besides being restless in the legs, antsy in my mind, and strangely very hungry. I basically just ate dinner in bed. Monty temporarily lifts his head up from sleep at the foot of my bed and sniffs the air to identify what I’m eating should he decide he wants some. He does not. He plops down his head with an exhausted exhale and his belly falls. It doesn’t take him long to re-enter dream world. Me, I am stuck on this side. Reality in the middle of the night. The same as last night and two nights before that. The last few hours have looked a little like this:

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But lately my problem is not as much my difficulty in sleeping as much as what happens once I finally do fall asleep. I think it might be starting to be a problem. Here’s an except from my notebook from a few weeks ago.

Recently, I took a trip to spend Thanksgiving with my Brother and Company in Miami. I slept in baby Olives room, my one-year old niece. The second night I was there, I had a horrible nightmare. Something I’ve been having more and more of these days. This one wasn’t so much plot based as it was more a series of disturbing images, like those old home movies that play a little choppy from slides. From the start the dream was filled with eerie-ness and unease. I was in a dark place (literally)- similar to a cave but not entirely enclosed. There is nothing pleasant about my surroundings. The aesthetic is dull and drab. I’m walking forward but don’t know where I’m going. I see a full skeleton positioned against a wall, sitting as though it were an alive body, reading or relaxing. As I’m staring at it, suddenly the skull whips its head to turn and look straight at me, and its mouth jolts open. Quickly, harshly, intensely. In a word, it was terrifying. Almost at this same moment,  I realize I am dreaming. I find myself trapped in this nightmare, which has happened before and is now happening frequently. I try to scream in order to wake up my brother or sister-in-law, knowing that if I scream they’ll come to the room and subsequently I’ll wake up, escaping the dream. But when I try to yell, nothing comes out. Not only that, my mouth feels glued shut, as though my upper and lower lip were molded together. Consequently I am voiceless. My next attempt to escape is to physically kick and flail my limbs with such gust that the movements shake me out of it- my equivalent of pinching myself awake. But when I try to kick my legs, they’re stuck. They don’t move. They feel as though I’m standing waist deep in thick, dense mud. When I try to move my arms it feels like I’m in a straight jacket. So there I am; trapped in a scene which appears terrifying to me, and unable to speak or move. The strangest part of it all is knowing that it’s not real. Once I have this realization, the fear should fall away shouldn’t it? At any rate, it’s just a stupid skull head with its mouth open. It’s not the first thing I’d like to see in the morning but still, it could be worse. I try and try to scream and move and kick and flail but I can feel all my attempts failing. Silence, stillness, stuck. It’s stressful. The fear is tiresome. Finally, something from the other side makes a peep into my dream. I hear it once. I hear it again. It’s reality calling. Gradually it grows louder and louder, and I dissolve slowly from the dream. It turns to ash as I slowly wake to the bedroom. The reality calling is baby Olive crying. Finally, my eyes open. I can move my legs. I have a voice. I relish the sound of the baby crying. Never have I been so relieved and so happy to hear that sound. I feel bad because it was probably me squirming and making noise that woke her up–trying to escape the cave with the evil skull! But this is how it goes now. I realize I’m dreaming, often it’s a nightmare, and I can’t get out of it without something from the other side, some external force intervening. My mom saying my name, Monty pawing at me or the bedside, my phone ringing enough times to finally rattle me out of it. But never on my own can I get out. My sister-in-law sneaks through the cracked door stepping lightly, hands Olive a bottle and immediately her crying stops. She lays back down in her crib and soon I can tell by her breathing that she is back to sleep. Me, my heart is still beating fast, and I’m thanking God that Olive cried and got me out of the dream.                                    

                                                                                                                                          11-27-13

So there it is. I went a whole week without a computer! Sometimes you just need to feel a pen glide on paper. Anyway, that’s what happening lately. It’s making my nights quite..adventurous.  I remember learning in a Psych class once that in our dream phase of sleep, the brain temporarily “paralyzes” the body, so that we don’t jump out of windows or act out the weird things we do in our dreams. So there seems to be a miscommunication somewhere, a mis-firing of neurons between my brain and my body. One says I’m awake, the other says I’m asleep, and I’m caught voiceless in the mud, somewhere in the middle.

As dependent and exaggerated as it may sound, Monty has been my life saver lately. Or dream saver I should say. In my last few nightmares, I’ve called out to him (or attempted to) knowing if he made noise in the room I could get out of the dream. Two nights ago was another very scary one where I couldn’t move or scream, but I remember trying so hard to yell Monty’s name. All I could get out was “Mmmmmmm” because once again, my mouth was glued shut. Even without fully saying his name, he came in my room and pawed at my bed, until I woke up and my voice came back. I hugged him really really tight then, and he slept the rest of the night in my room. (Not on the couch, which he apparently finds preferable) Because the dreams are so real, the fear is so tangible and the images so lucid, even after waking up I feel in an eerie haze. Floating in some in-between world. I often need to look at something mindless to get my head out of whatever nightmare I was just trapped in. (Helloooo Facebook at 3 am) There are plenty of distractions to lift the post-nightmare haze, but in the meantime, I’ve got to figure this out. There must be a way for me to get myself out of these dreams once I’m made aware of where I am. And while I admit there are unpleasant and scary moments in all this, it is very interesting. I’ve always been a heavy dreamer, waking every morning  often with detailed streams of dreams playing through my mind. Sometimes I write them down, other times I tell myself I’ll remember and I put it off. But the more I immerse into real life, the faster the dream fades. “Like cotton candy” my mom always says. “Write them down right away!” My mom happens to be a student of Jungian psychology and well versed in the symbols and library of dreams, so since living with her again, she’s been a live in dream-interpreter for me, which is nice. Think about it– there is no clearer or more accessible portal into your subconscious than dreaming. It is hours of our existence that is not interrupted by thought, so I know there are profound answers to be found there. I am her I.T. person and she is my dream analyst. Fair trade.

I’ve learned quite a lot in breaking down the symbols in our dreams. And there is universal meaning to be found there. Do you think it’s a coincidence that many people dream their teeth are falling out? Or that they show up to an event completely naked? Or arrive to take a final for a class they haven’t gone to all semester? Of course each one relates more individually to each person and their life, but this is the human experience. We aren’t so different. I think it’s fair to say there is some objectivity in examining the subconscious without subscribing to some hokey pokey psycho crap. Admitting there is meaning in our dreams isn’t subscribing to witchcraft, as I’ve heard people react when hearing of dream interpretation. We shouldn’t be afraid to go deep for answers. That’s where most of them lie.

I’m going to attempt sleep once again. Monty is here and has been made aware of his duties. “When I start freaking out, you paw at the bed. Got it?” On the next post I’ll have my mom break down some universal dream symbols and go further into these nightmares if they’re still occurring. If anything, it’s another adventure. The riddle now is how to get out.

Accepting any/all suggestions!

Health, Happiness, Dreamworld

Some Posthumous Advice

A friend sent this to me recently and I really loved it.  There’s something relieving and freeing about it and I think we could all use a laugh. Read it, you’ll smile.

Written by Caitlin Moran,
Published in The Times of London

My Posthumous Advice For My Daughter

My daughter is about to turn 13 and I’ve been smoking a lot recently, and so – in the wee small hours, when my lungs feel like there’s a small mouse inside them, scratching to get out – I’ve thought about writing her one of those “Now I’m Dead, Here’s My Letter Of Advice For You To Consult As You Continue Your Now Motherless Life” letters. Here’s the first draft. Might tweak it a bit later. When I’ve had another fag.

“Dear Lizzie. Hello, it’s Mummy. I’m dead. Sorry about that. I hope the funeral was good – did Daddy play Don’t Stop Me Now by Queen when my coffin went into the cremator? I hope everyone sang along and did air guitar, as I stipulated. And wore the stick-on Freddie Mercury moustaches, as I ordered in the ‘My Funeral Plan’ document that’s been pinned on the fridge since 2008, when I had that extremely self-pitying cold.

“Look – here are a couple of things I’ve learnt on the way that you might find useful in the coming years. It’s not an exhaustive list, but it’s a good start. Also, I’ve left you loads of life-insurance money – so go hog wild on eBay on those second-hand vintage dresses you like. You have always looked beautiful in them. You have always looked beautiful.

“The main thing is just to try to be nice. You already are – so lovely I burst, darling – and so I want you to hang on to that and never let it go. Keep slowly turning it up, like a dimmer switch, whenever you can. Just resolve to shine, constantly and steadily, like a warm lamp in the corner, and people will want to move towards you in order to feel happy, and to read things more clearly. You will be bright and constant in a world of dark and flux, and this will save you the anxiety of other, ultimately less satisfying things like ‘being cool’, ‘being more successful than everyone else’ and ‘being very thin’.

“Second, always remember that, nine times out of ten, you probably aren’t having a full-on nervous breakdown – you just need a cup of tea and a biscuit. You’d be amazed how easily and repeatedly you can confuse the two. Get a big biscuit tin.

“Three – always pick up worms off the pavement and put them on the grass. They’re having a bad day, and they’re good for… the earth or something (ask Daddy more about this; am a bit sketchy).

“Four: choose your friends because you feel most like yourself around them, because the jokes are easy and you feel like you’re in your best outfit when you’re with them, even though you’re just in a T-shirt. Never love someone whom you think you need to mend – or who makes you feel like you should be mended. There are boys out there who look for shining girls; they will stand next to you and say quiet things in your ear that only you can hear and that will slowly drain the joy out of your heart. The books about vampires are true, baby. Drive a stake through their hearts and run away.

“Stay at peace with your body. While it’s healthy, never think of it as a problem or a failure. Pat your legs occasionally and thank them for being able to run. Put your hands on your belly and enjoy how soft and warm you are – marvel over the world turning over within, the brilliant meat clockwork, as I did when you were inside me and I dreamt of you every night.

“Whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.

“This segues into the next tip: life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES. However awful, you can get through any experience if you imagine yourself, in the future, telling your friends about it as they scream, with increasing disbelief, ‘NO! NO!’ Even when Jesus was on the cross, I bet He was thinking, ‘When I rise in three days, the disciples aren’t going to believe this when I tell them about it.’

“Babyiest, see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes, talk to Daddy and Nancy about me every day and never, ever start smoking. It’s like buying a fun baby dragon that will grow and eventually burn down your f***ing house.

“Love, Mummy.”

You can see the original post on Caitlin’s blog at Brouhaha

Thank you Giselle for the read! And congrats to my sister Amelie, who is a new mother today. It’s a good day.

Health Happiness Moms

The Eighty Year Old Twenty Year Old

How come no one ever warned me about how hard your twenties are?

Well first, let me say hi. I returned last week from a medicinal tour of America. Yeah! I had to see my doctors in Colorado and Miami–Which means I had to take part in modern American air travel which means I felt like crap a lot. I went to Colorado and felt absolutely terrible the whole time I was there. The funny thing is, despite feeling awful, I had a really great trip. I stayed with my grandma at her assisted living residence. But judging what my days were like and what her days were like, you’d guess I was the 83-year-old and she was 28. She lives a very active, involved, and social life. She wakes up by 5 and it seems like she doesn’t stop until she sits in her recliner chair at night. She can hardly keep her eyes open through the news. Me, I slept mostly. She brought my food at normal food hours and finally after being completely fatigued and short of breath for 3 days, my uncle Mike hooked me up to her oxygen tank she uses at night.  So I looked like this most of the time.

 

Air please thank you.
Air please thank you.

The extra oxygen helped, but I was still out of sorts the whole time. Weak, Dizzy, Fatigued Yada Yada Yada. Luckily my grandma is one of the easiest people to be around. We talked a lot while I was there. I love hearing her stories. I love how happy she is at her age. I love that grandmas exist. I used to fear growing old, but watching her, I don’t anymore. In fact, I’m ready to stop being young and stupid.

I ask about a warning I never got because this Saturday I will turn 29. The last year of my twenties. It seems typical to freak out a little when the big three-oh approaches on the horizon. I sense that a bit. But at the same time, my twenties have been really hard. And nobody warned me! Though I don’t know who would, and it wouldn’t really make a difference would it. There’s been tragedy and heartache and some things I didn’t think I’d find my way out of. But, alas, I survived. I laugh because the more people I ask about their twenties , the more I hear people say that those were some of their toughest years. In fact most people said their 30′s were great and my grandma insists your 40’s are the best. Hers were anyway. I don’t know what makes them so, tortured, your twenties. Mine have felt mostly uphill. You know how babies go through the “terrible twos”? Well maybe your twenties are the adult version of that. I think it’s an odd time. You’re no longer an adolescent at all, but the college experience isn’t quite a real-world experience. I went to a University of 30,000 people, but still, it felt like a bubble. After leaving, it felt a little, anti-climatic? It’s like you’ve got all these credentials to prove that you’re an adult now, and the world expects that from you. But there’s still so much to figure out. Then again, I guess everyone is still trying to figure it out. The most important thing is to figure yourself out. I guess by your 30’s you’ve got a pretty good grasp on who you are, and that makes things easier in general. Have you ever hung out with someone who is unsure of themselves, who needs approval for everything? It’s exhausting, and it stems from not having a good hold of themselves. Sadly, we’ve probably all been there. I have to say that not really having my own home or my own money sort of stripped down my identity. I had to start over in a way. It was humbling but it also helped me get to know myself better. When you lose all these external things, it forces you to go within.

Then again, I can’t deny that my twenties had some amazing parts to it. I fell in love for the first time. I lived in France. I published my first article. I traveled and I made incredible, life long friends. I wrote a blog that became bigger than me. It’s had its perks. But I must admit, a part of me is banking on it getting a little easier in my 30’s. Like I’ll really get to enjoy all the wonderful things I’ve gathered with me along the way. A girl can dream.

A few days ago, I found a journal that my dad kept. It feels like I found lost treasure. Of course it’s always extra special when you’re reading someones written words after they’re gone. I read it with such a sense of wonderment. I was only 12 when he died, so I wasn’t really able to experience who my dad was an adult. I feel sad to have missed out on it, but at the same time, reading this journal has helped me to know the man I wasn’t able to know as a kid. I admit I completely idolize my father. It’s easy to do–he was a wonderful person and anyone who knew him would tell you that. He was a lot of people’s best friend. I’ve only ever heard of the wonderful things he did and the amazing person he was. I remember him yelling only once, and that was at my sister for not eating the disgusting buckwheat pancakes he cooked for breakfast. That night he bought her yellow roses, apologizing for having gotten upset.

In other words, he was Mother Theresa. And I often wonder if I am living up to how good he was or how generous he was. Furthermore, I compare other people to who he was, setting a really high bar particularly for the men in my life. Which is for the most part, good. It’s fine to have high standards. But sometimes I wonder if the bar is set so high that no one could live up to it. I need to remember that my dad was still human. He got upset sometimes. He judged people sometimes. He even cursed at our dog Bacchus while throwing rocks and chasing him down the street in his suit and tie. He slipped up like we all do, and I need to remember that. Reading the journal has brought to light the very human nature of my dad that I sometimes forget was there. The best part was, in the journal he describes each of my siblings and me and what makes us each unique. There on the last page were his words about me. Reading them was such a gift. It felt like I was sent an early birthday present, from somewhere over there. :)

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Anyway, I’ve become a little distracted. I try to write but I just feel more an urge to read.  Which is OK so long as this doesn’t turn into a writing breakup. I need to stay focused. But it’s been gloomy and grey and rainy out–so it’s perfect read and nap weather. Know what I mean jellybean? Anyway, all this reading and napping jazz has me worn out. I’m off to dream world.

Health, Happiness, Twenties.

What To Say When Someone Has Died.

It’s been one of those weeks. I realize the title of this post is a little dry, emotionless, business-like even. But I don’t mean it that way. It’s been something I’ve thought and written about before, and in the wake of tragedy the words have been busying my brain. (Hence me writing now, at 3:30 am)

A good friend of mine lost her love suddenly and tragically this week. I hardly knew him at all, but of course in the hazy aftermath of the realization that he’s gone, and the strong sadness I feel for my friend who lost him, we all can’t help that feeling that so often comes in death, sudden or not. He was too young. This wasn’t supposed to happen. Things like this happen to other people. Death is always a knock at someone else’s door. Rarely do we feel accepting when it knocks at our own. Or comes into our neighborhood anyway.

The worst of it is, there truly isn’t much to say in these situations. And as humans, as fixers and problem solvers, it leaves us all a little stumped. A little quiet. There are few words I can think to say to my friend who lost him. Accept to hold on. That we as friends will hold her hand through it. That it will be OK. But first it will be hard and trying and she already knows that. One day at a time I would tell her. Some days, one hour.

As having lost a dad to cancer–a slower death, and a step dad to heart attack- an abrupt and unforseen death, I can say that both are difficult in different ways. At least in cancer  you have time to prepare your affairs to some extent. I remember my father in his bathrobe, stick thin except for his swollen legs, on our back patio in the sun picking out music for his funeral. Laughing. Having a wonderful time. And that memory really sticks with me. It made me for once, unafraid of death. With my step-father it was different. No preparation, no time to really process it. He was here and then he wasn’t. Alive then in the ground. And what do you say to a mother who loses the second love of her life? How do you convince her there is design in all this? In the depth and solitude of grief, it’s hard to find reason in any of it. I know that feeling very well. And vague phrases about life and God and a reason for things, often fall flat. In the moment of pain, you just have to feel it and grieve it and keep on going. This is life after all. Peaks and valleys. And here I go with the vague phrases about our temporary existence. I’ll stop.

What I really want to say, is that I feel a real duty in being there for humankind when they lose someone they love. Mostly because I remember what helped and what didn’t in past times of tragedy. And also because there is no education in all this. No preparation in school for what to say and how to act when someone we know has died. And for anyone reading this, it may seem abundantly clear how lacking we are in this culture of behavior in death. There is, or maybe there should be etiquette in it. And so many lack it. I remember a family friend calling after we lost Roger. “What are you guys going to do?!?!” She pleaded to me on the phone. “And your sister is getting married next week!! In the same place your mother was married?! What will she do? Will your mother keep the house?!” I sat on the phone quiet, with tears running down my face. “I don’t know” is all I could say. And then, silence. Because I didn’t know. There was no way to know what to do next. Like I said, one day at a time. I just remember thinking that asking so many questions at that time wasn’t very helpful. In fact, it was the opposite. It’s not at all a time to start changing major life plans or rearranging things. Mourning is a process, and we have to be patient. The most helpful people in that time of crisis, were those who made small decisions for my mother, and didn’t bombard her with questions. A house in a time of grief is filled with flowers and food sent and relatives and friends. There are logistical things to take care of. There is damage control to do. And that’s what we all did for my mom, attempting not to bother her with details. I know this sounds perverted, but in some ways it can be a really beautiful time. It is when we truly acknowledge what it is to be human. We show our love without hesitation. We hold each other in tears and cry with them or let them cry on us. With this embrace we communicate that their pain is our pain too. In death we’re all the same.

I am a severe lover of animals and what they can teach human beings. (Far more than we give them credit for, I think) In grief I am reminded of elephants, one of the only other animals that are noted to grieve physically. They allow themselves to cry. They can be seen caressing the body after the animal has died, and different, distinct behavior can be observed of a matriarch even years after she loses a baby. Surviving elephants are known to stand together in their herd by the body of a fallen one in silence and stillness. Undoubtedly, they exude sorrow and seem to have some sort of formal grieving process, even beyond physical tears. Whenever I think of someone who will need help in their grief, I think of the elephants, standing by one another. They seem to convey to us, it’s not something to do alone.

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I remember at the time of Rogers death, some of the most poignant times and helpful moments were those with no words at all. As each of my mothers four children and two step children made their way to our house, each hugged my mom, and both simply cried. I remember her weak voice, but her warm body when we hugged for a while. I live closest to home so I was the first kid to get there. Walking up our porch steps I thought “What will I say?” When we met eyes all she said was my name and then we hugged and cried together for what felt like a long time. But truly, that seemed the mose appropriate thing to do. The only thing to do. There were no words to say then. Helping someone grieve and truly being there for a fellow family member or friend is not so much a matter of having the right words to say but more a matter of simply being there. A warm body to embrace when the reality is too much. A literal shoulder to cry on. Someone who allows us our sadness.

For many people, the crying makes them uncomfortable, or the silence does. But crying is just a part of our grief and something we have to do. It’s a sign of us coming to terms with death. It will come out some way or another. We’re so quick to hush the griever and tell them its OK. But I think it’s acceptable to admit that things suck right now and the creator seems like an idiot and even crack jokes when the timing is right. I never cried or laughed so much as the week that Roger died. Which may sound morbid but it really wasn’t. Someone’s death brings on too the celebration of their life. It’s a time to tell stories and toast to their quarks and remember their beauty. Crying and laughter will ensue, sometimes in the same breath. And maybe even drunken debauchery. At any rate, I want to tell my friend, and anyone in the throes of grief, that it’s OK to cry and it’s OK to laugh and it’s OK to throw plates at the wall. Anything you feel is OK honestly, and you just need to do what feels right to you. There’s no right way to do it.

I didn’t have an answer for the woman on the phone with so many questions before. I couldn’t have known that a year later my mother would fall in love with the brother of my dads best friend and that even a tragic story like this would have its own happy ending. And maybe that was one of the biggest things Rogers death showed me; it was an end, but not the end. The story would go on. And that’s what I want my friend and anyone in the depths of despair to know. The only adage that gave me hope was remembering that This too shall pass. And it did.

Health, Happiness, Grief.

Today Is Wednesday.

Today it is hard to wake up. It is hard to move my fingers and hold this pen. Everything is heavy as though my insides are all made out of lead. If you’ve ever tried running underwater in the deep end of the pool, then you’ve had a glimpse of it. It’s hard to say why my body has backtracked these few days. Last week felt like a good one, more solid than the past, and this week things fell apart. Did I get too sucked in? Did I overindulge in the tasks of the busy world? The fast work. The chattery world. The one that I used to think didn’t have room or time for the sick?  (I’ve changed my mind on that one.)This is often the culprit–engaging in too many things that in the end don’t really matter.

So now I will rest. I will sit in the room with the big windows and let the light in. The dishes will wait. Paperwork will wait. Even Monty will wait. Every once in a while he’ll get a burst. He’ll paw at my chair- but behind his brown eyes, sometimes so deep and intense I wonder where his mind is- but he knows that today will have to be one of rest. He curls into the half moon shape at the base of the chair, back to doggy-chasing rabbits-gratuitous bacon-dream world. I apologize and I don’t know if he understands or cares, but he is a creature of the present and for that fact alone he doesn’t seem to mind. It isn’t in his DNA to mind. When we rest we rest and when we play we play and there’s no good reason to cry or complain when we’re doing one and not the other.

Even though it’s a sick day, a string of sick days that always has the grim potential to turn into months of sicks days, I want the world to know that it doesn’t feel like suffering. It just feels like something the day brought- as though it were sunshine or rain or an LL Bean catalog in the mail. It doesn’t feel personal. I know people who take offense to the rain. How dare it rain on my wedding day! Who cares? Nature is balance, nothing more. I’ve been practicing putting the sickness in the same category as the behavior of nature. It takes the sting of it away. Today is Wednesday. It’s humid and raining off and on. My limbs are heavy and stiff and my fingers don’t fold so easily into my palm. The invisible wet blanket of the illness I carry is extra wet–maybe from the rain! But none of this has anything to do with how happy I can be. How much joy I can find.

The things that thrill me still exist. Monty’s tail still wags when he sleeps. The smell of the magnolia tree outside is heightened from the rain. I have a house for Monty and me. A home base that isn’t impatient at all when my life has to slow down. I don’t have to run from sick days. I can let them come and let them leave and not get upset in the meantime. Simple pleasures still exist. My eyes can still take them in. And even if my eyes give out on me, my heart will still know the joy of it. My soul is learning to open slowly, much like the magnolia I picked that is now wide open at my windowsill. I am hanging on to life’s little treasures and remembering and emphasizing and reminding my busy brain that all of these things exist no matter what condition my body is in or what kind of outlook I have. I can stay closed until I think life is going my way or I can open up wide to the world and the sun and every person and animal I meet. It is in fact, up to me. If it’s left up to anything else, then happiness will be a constant, conditional pursuit and never actually attainable. I think when you’re around happy things enough, you start to see where they have it right. Today is Wednesday. It’s muggy and hot. I am heavy and dragging. It will be a good day.

Mastery of Life is the Opposite of Control. -Tolle

Health, Happiness, Wednesday.

You’ll Forget. And So Will They.

There is one component of this illness and autoimmune diseases in general which exacerbates the whole experience. The invisibility factor. You can’t see it. Many times when it shows its ugly head, no one is around to bear witness. People see us when we’re out and about and well, or faking it. I’ve lost count of the number of times I hear “But you don’t look sick!” People have a notion of what sick looks like, and this doesn’t fit the bill. One day you’re normal and the next day your plagued with something worse than a flu, or a hangover, but you didn’t do any drinking. It’s just such an enigma on so many levels, besides keeping up appearances, that it’s no surprise people just plain forget you’re sick. And it’s understandable. Because honestly, you forget too.

To this day I find myself committing to things as though I am normal, as though I have boundless energy, as though I don’t spend days in bed sometimes for no real reason at all. My circumstances aren’t normal. And some days I have to remind myself by the hour of my limits. Many times I fail to recognize them and I pay the price. So it’s no surprise that the people we love, the people we’re closest to-friends, lovers, family- they’ll forget too. And it’s easy to see why, but it will make you defensive. You’ll tell yourself they just don’t get it and they’ll never understand! And you’re right, they don’t. It’s impossible to know unless you’ve got it yourself. But don’t let that separate and isolate you more. You’ve got enough boundaries. When someone doesn’t believe you, when someone criticizes you, judges you, or doesn’t give the sympathy you’re looking for, let it go. Meet their disbelief with love and understanding. Because the truth is, if you weren’t sick with this, would you understand it? I know it’d be hard for me. I was young when I became ill but I remember distinctly things coming easy to me. Being a good gymnast. Getting good grades. Good family and friends. A 9-year-old with everything! I had no real reason for pause. I often consider what my life would be like had I not gotten sick and in general it’s with the notion that I’d be a better person living a better life. I really wonder about that now. Being sick and at the mercy of others help and kindness, I’ve learned remarkable lessons in humility and compassion, and those are just scratching the surface. I can’t say who I’d be without illness. But like my mom said once “Who knows? Maybe we if we hadn’t gotten sick we’d just be two capable assholes.”

The point is, when I still my mind and consider all the parts of this, I can understand the doubt, the skepticism, the misunderstanding from others. This is not a well understood disease, even for us sick ones. (But I know that one day it will be. I know that.) I remember once last year, I woke up with a pounding migraine. I was in one of my awful cycles. The first dose of medicine didn’t work so I took two, among my other cocktail of meds. I got out of bed around 1:30, hazy, tired, and the hint of my migraine still masquerading around my head. My boyfriend at the time saw me and said “You’re up! Hey, do you want to go shoot guns today?” At that moment I thought of 647 other things I would rather do than shoot a gun. The mere thought of shooting a gun made my headache perk up like what? huh? guns? Here I come!!! Even the suggestion of that activity made me mad. I felt really misunderstood and alone and thinking what I so often think: if they could only feel what I am feeling, they would understand. And it’s true. I think if most people felt the symptoms of CFS even for ten minutes, they’d have such a better grasp of what we are dealing with on a day-to-day basis. But that’s not possible. So it is up to us to communicate with love to those who don’t know. What we’re dealing with is basically invisible, and getting defensive and trying to prove it will exhaust us even more.

Besides my mom, who is also sick with this, I think about the one person who has been by my side throughout all of this, and has required the least amount of explaining. The answer is Monty. I realize that sounds juvenile. Oh Mary, you crazy dog lady..maybe you should talk to some PEOPLE. And truthfully I probably should. But I think about the number of beds Monty has slept at the foot of. Patiently he waits until I get up. Some days it’s only a minute..we don’t play and he doesn’t seem to mind. He follows me into the bathroom, he follows me out. When I go back to bed, he does to. And this is a very energetic and active dog. He could go all day, literally. But it truly feels like he picks up on sick days. When I wake up in the morning, he always takes some deep breaths really close to my face. It’s like he can tell by smell whether I’m going to get up or not. Sometimes he sniffs and hops out of bed ready to go. Other times he sniffs and goes back to bed. It really is like he knows.

The thing is, Monty doesn’t understand all the weird components to the illness. He doesn’t know what chronic fatigue syndrome is. He doesn’t understand why some days we play and other days we don’t leave the bed. Sometimes for a few days at a time. But he doesn’t even require an explanation or a defense, because what he is exemplifying so beautifully is living in the present. When it’s time to play, we play hard. When it’s time to sleep, we sleep like it’s nobody’s business. Whatever he does, he does fully. He shows up wholly to every moment. And it’s a truly impressive thing to witness. One of my favorite things is to watch Monty when he gets up in the morning. I open the door for him and he walks outside, stops, and sniffs the air for about 15 seconds. It’s like he’s taking in everything from the night and everything that the day will bring. I like watching it because it’s reflective, and we live such busy, fast lives, we constantly neglect reflection. I think it’s fair to say that it’s required for a happy life. We have to stop sometimes. We have to take things in. We have to feel our feelings. (Smell the roses, if you will.)And we don’t need to say it all on Facebook. Some things we should hold inside near our heart. Or whisper it to someone we love.

I am reading a book called Everyday Grace by Marianne Williamson which is incredibly poignant and really well-written. I find myself underlining entire pages. It’s always been a goal of mine to have a book club but of course I’ve never gotten it together and am bad at keeping commitments. So for now the blog will be it. And I invite all of you to read and share your thoughts on these books. I have about twenty more pages and will have a review/summary/dialogue next time. But if you’re looking for a book as a companion..this is a good one. It’s been seeing me through sleepless nights and reading it when I wake up in the morning gives me a happy way to begin the day. One of my favorite lines near the beginning is “We don’t need to push life so much as we need to experience it more elegantly, to be motivated more by inspiration than by ambition.” I like that idea. When I’m not in bed I let my instincts and inspiration guide me…even it’s just sitting on the porch swing and looking at the flowers, which I do a lot. Monty makes me throw a ball and swims laps in the pool. See?

Please just throw the ball.
Please just throw the ball.

 

Anyway, I am working on living a reflective life. I try to take in every moment truly, and feel it genuinely. Even if the moment is sad or fearful. I know that not feeling things through leads to trouble later on. I’ve been there before. For now, I feel happy. The sun is out and the porch swing is calling.

Health, Happiness, Smelling the Roses

Baby Talk.

Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.

My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.

I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.

They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.

It's so easy!
It’s so easy!
mag
It really is quite easy. Cheerio!
Oh God.
Someone make it stop.

I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?

After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!

Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.

Health, Happiness, Babies.

Back To New Orleans.

Excuse the drabness of this post, I’m on day 10 of a headache and sometimes it makes the words come out funny. Or boring. But the show must go on! Anyway, I have some news. I’m pregnant. Just kidding. I just keep dreaming that I am. It’s pretty stressful. Because in the dreams I’m like wait, I take waaay too many pills to effectively grow a fetus inside of me. The rest of the dream is spent in panic mode wondering how to be this sick and how also to care for a child. Sick girl fairy tales! So, the real news.

First, I’m back in New Orleans. Monty and I both are. In fact I’m writing from a courtyard at a friend’s apartment in the French Quarter now. It’s weird to think I’ve been gone for nearly nine months. I don’t know if that’s a thing about the South or a thing about Home, but it never truly feels you’ve been away for as long as you have. As soon as the humidity grabs you at Louis Armstrong Airport, you pick up right wherever you left off. Changed or unchanged.

My original plan was to just spend the spring here. New Orleans has about the shittiest climate of any American city, but April and October are magic. It’s perfect. And when you’re here on a day like today, you wonder why anyone would ever ever leave the place. Plenty of artists have depicted the perfection of this city a million ways better than and before me, so I hesitate to try. I can only describe it as magic on days like this. Of course outside those couple of months, is a city ill-equipped for a few weeks of penetrating cold, followed by relentlessly rainy or relentlessly hot or relentlessly both. In those times it’s easy to see why people would leave. And yet few seem to. The roots here are deep, and I love how many love stories there are between person and place. I’ve lived in different cities over the years and have more than one place to call home, but there is reserved a very special spot for New Orleans. It’s like that boyfriend you never quite get over.

The original plan was to come for my friend’s wedding and spend a month reacquainting myself with the city I’ve been missing. But in February my parents made me an offer. They knew how hard it had been for me to give up having my own place two years ago. Beyond not having the money to afford my own place, I don’t really have the health to live on my own either. It’s a chunk out of the ego to come to terms with things like that. My mom was constantly driving over to pick me up and bring me home. It’s long been a difficult truth for me to accept that I can’t live on my own. I have always loved solitude, and basically since moving out of my apartment that March a few years ago, I haven’t been able to really find it. That all changed in February when my parents told me they were willing to let me and Monty move into their pool house. Because that’s what all mature 28 year olds do; they live in their parents pool house. My mom explained that this way, at times when I’m too sick to be on my own, they’ll be on the property to help. And for the rest of the time, I’ll have a place to call all mine. 

Since that morning, even the thought of their offer has brought me ease. One of the hardest feelings in the world is, in a word: stuck. Stuck with somebody. With something. In someones house. Stuck in a crap situation. One where you don’t see an out. I have confronted this feeling many times and it can feel crushing. It’s often just the wrong set of eyes to be looking at a situation. Many times when we feel stuck we’re not always seeing the whole picture, or the truth of what we’re surrounded with. But I must admit, the feeling has pervaded over and over and I think it stems from a lack of options and a lack of power on my part. When you don’t have health and you don’t have money, you’re not left with much to offer the world. You’re sort of just relying on the pure heart of people around you, because if I’m honest, for everything they do for me, I have little to offer in return. And that has been the truth of my situation for a few years now. So many times–relying on the goodness of people to do things for me, knowing full well I most likely won’t be able to pay back the favor, or the funds, or a house. It’s been a lesson in humility to say the least. How does that quote go? The true character of a man can be measured by how he treats someone who can do him no good. Something like that. I think of those words all the time. I watch people endlessly help to make sure my needs are met, and all I can do is go to bed at night with an immense sense of gratitude and no certainty that I’ll ever be capable of repaying the favor. I promise myself and the universe, if I’m ever well again and if I ever have money, I will use them both graciously for good.

Tomorrow I’ll start the move into my new place and fantasize about all the wonderful things that may happen to me and my life when I’m in it. Maybe it’s the house where I get better. Where all my wildest dreams come true. Where I find my happy ending. Maybe it’ll just be a nice place to write and lay around and be sick. Go my own pace. Either way, it has a pool, so Monty will be happy, and that will make me happy. I also really enjoy being under water, so there’s that too. I’ve got some projects in mind to begin working on now that I have some space to carry them out in, so at least there will be time and room for all the ideas I’ve been scribbling around in my library of notebooks. Before I go, I’ll leave you with a few photographs of the magic city in Springtime. Everyone needs a pretty day in New Orleans. It does the soul some good.

Health, Happiness, Home.

Nothing beats a New Orleans Wedding.
New Orleans Wedding.
Nola Windows. They're the best.
Nola Windows. They’re the best.
photo-68
Life In Color.
Eating crawfish. Once you know, you know.
Eating crawfish. Once you know, you know.

Girl Without Pills

I ran out of pain pills last night. I took my last one at 2 am, with fingers crossed and divine pleadings for what lied ahead. I knew full well that if something were to go wrong tomorrow between the doctor or the pharmacist or something logistically silly that I have no control over, then it was going to be a very bad day. All it takes is a pharmacist who decides that it’s too early for your prescription to be filled, or decides they need the prescription in writing or says that only if it rains tomorrow will you be able to get your pills. Every time I pick up the phone to talk to a pharmacist, check on a prescription, call something in…my heart pounds. It’s a true battle. Seriously. If I didn’t get the pills by tomorrow I’d be positively out. Dry. And I’m years beyond the point of something like tylenol or advil being any kind of effective. The sad truth is that if a 200 pound man took the pill cocktail that I do everyday, he’d have a hard time functioning. If it sounds like I’m bragging I’m not. It’s just the truth. I’ve been trying to get my pills since last Friday. If I don’t get them tomorrow, on top of the pain there would be  bad withdrawal effects. Icing on the cake.

Bright and early this morning I called the doctors office to make sure they received the authorization form. They informed me that they received it and authorized it on Friday. Last Friday. Bad news. That means a pharmacist decided not to fill it for whatever reason. And now the state of my well being, my comfort, my ability to function and sleep, is resting on the shoulders of someone I don’t know at all, and whatever he or she decides is the appropriate day to give a sick girl her pills. But I am just one of many. I’m sure they’ve heard a lot of stories. A lot of abusers. Addicts. Maybe to the pharmacists we’re all addicts until proven sick. “Your pain medicine will be available to pick up tomorrow.” I can tell by the stern urgency in her voice, there is no talking her into giving them to me a day early. A day earlier than the arbitrary Thursday that someone decided was the absolute appropriate day for Mary to get her pills. I tell her thank you. I talk to her like she’s a cop. Make her feel powerful and thank her graciously. I hang up the phone and know that the next 24 hours are going to be tough. I’m not going to sleep tonight. It’s 10 am. The pharmacy opens at 8 tomorrow. 22 hours to go.

Oh you want these pills? TOO BAD!!!
Oh you want these pills? TOO BAD!!!

I often try to calculate how many hours I’ve spent in line at Walgreens. On the phone with Walgreens. On hold for my doctor. On the phone with insurance. (Back in the day when I had insurance.) Acting as a mediator between two institutions which seem to often…miss one another. It’s probably better I don’t know. I don’t count the thousands of dollars out of my moms savings that go towards prescriptions. Inevitably the numbers would be high and sad and dissapointing. What I really need to do is be thankful that for now, there are pills out there to help me and for now, we have the money to buy them. Except today. Today was different.

Today was an insane reminder of what my body feels like in its natural state- which is fucking terrible. I’m sorry about the F word, but I really desired emphasis there. It’s been awful. Of course part of the feeling is withdrawal..but mostly it was just that widespread pain and awful, burning, firey legs. Under my fingernails hurt. My gums and teeth hurt. My body felt like a high voltage electric fence–exuding pain frequencies. It was pretty terrible. At the same time there was light at the end of the tunnel; I knew that by tomorrow I’d get relief. So it was only a day and I looked in the mirror and said for God’s sake Mary, I can go a day without! 24 little hours. And of course I could..it wasn’t going to kill me.Mostly it was a huge reminder of what life without pain medicine would be like, and it was really, really terrible. I know I sound like an addict- but I don’t get high off of my pain medicine. I take one at a time, and I don’t feel euphoric after. I just feel relief. But to outsiders I know what it looks like. And I can understand.

I fully prepared myself for another night up by myself, counting down the hours until I’d get my hands on something to take away the pain. A bath provides about 20 minutes of relief. But once you step out, it’s over. It all comes back. I wish I knew what was going on in my body. It’s like it’s being held hostage by an invisible monster. I realize that pain is not the natural state of the body. It wasn’t built to exist this way. I constantly think of a line in Mark Nepo’s book where he says “Pain is just a sign that something needs to change.” I wonder what needs changing in my life. I try to pay attention. I try to find the meaning in all of it. I do a lot of examining. I know examination is one of the benefits of my situation. It’s hard to truly examine life with all of our distractions and obligations- it’s hard to unplug from our devices. There is rarely quiet in the world. It’s up to us to find it.

I must have a pain killer guardian angel, because when my brother-in-law came home from work close to midnight I told him about my all-nighter plan and the insane state of my body. He happily informed me he had some leftover pain medicine from his knee surgery in his truck. HALLELUJAH!  The pain was going to go away now. I was going to get some sleep afterall. He saved me.

Sadly I know that it won’t be long before I run into this problem again. This logistical, bureaucratic, prescription nightmare is basically constant and I know that all you chronic sickleys out there have to deal with it too. And it’s not the pharmacists fault. It’s not the doctors fault. It’s partially a broken system, it’s partially the fact that drug addicts have tightened the reigns so much on oversight of certain drugs that it’s become hell for people who actually are just trying to feel better.  Last week it took countless phone calls and ten days to get my anti-biotics filled. Ten. I could bore you with the details but I won’t because we all deserve better!

It’s 2:30 am but I’m awake because 1. This is my quiet time. 2. It’s really nice to be alive and not feel the pain that I’ve been feeling all day. 3. When your soul wants to write, your soul wants to write. I have to be honest; all of this scares the shit out of me. I don’t want to have to take pills the rest of my life. I don’t like that I am dependent on medicine to be functional. But the hard truth is that the alternative is just not doable, or worth it to me. I couldn’t endure that type of pain everyday and be a solid human being. I think, eventually, it would just break me. It scares me because while I feel like I’m getting old, in the grand scheme of things I am only 28. I want to get married one day. I want to have kids. I don’t want my liver to explode. But there’s not really a way those things are possible for me right now and I trust that I am where I’m supposed to be. I really do. Being on my own has been immensely educational. In a way it’s made me stronger. Smarter. More self reliant. You sort of learn how to make yourself happy, and there is real value in that. I heard somewhere that 40 is the new 30, so maybe I don’t need to worry about these things just yet. I know the focus needs to be on getting well. It also needs to be on acceptance and finding my heart of joy, and writing, even when things are grey. I want to feel completely whole before I bring in anyone else to my life, and there are still a few pieces I’m looking for.

Anyway, now that the pain has subsided, I should try to find my way into the world of sleep. I day dream all the time about a life without sickness, without pills, without entitled pharmacists dictating a life. But the truth is, even in my dreams at night, I am looking for pills. Taking pills. Spilling pills. Pleading with pharmacists. When I wake up, its because of  pain. I take a pill of almost every color, and then I sit and wait. Every day the same. The life of a sick kid.

It’s better than it sounds.

Party On Wayne!!!

Health, Happiness, Pills

Believe in Miracles? Believe This.

Good News! I woke up yesterday totally healed. I have loads of energy and no pain at all. I threw out all my pills and I’ve signed up for a marathon and begin full-time work next week! Haha. Just kidding. But that would be cool wouldn’t it? I’d write my final blog post: “Well, I’m all better now. Peace suckers!!!!”

Last week I put out a call to the master of the Universe with a very modern hope that he reads blogs, and specifically mine. Well it appears, he does. Or he did. After a really tough couple of weeks with bone crushing fatigue and other relentless symptoms, I woke up on Monday…lighter. My weakness seemed to have lifted overnight and I felt energy that I hadn’t felt in a long time. It was bizarre. I didn’t think too hard about it fearing if I did it would somehow leave. On good days you just count your blessings and then you get a few things done that have gone undone and overdue while you were busy sleeping, living under a rock. Or covers. You get it.

I was surprised and deeply moved when I looked at the blog on Monday to see so many people had rallied in my corner, sending positive thoughts and prayers. Many of them perfect strangers. My mom had also written an email to family and friends asking for some divine help, as nothing on “this side” was really working. I was again taken back when I signed onto Facebook to see people gathering troops in prayer groups and the like to pray for me…a sick girl who asked for a little relief. My cousin Cindy asked her “prayer warriors” to come together and see if they couldn’t “lighten her load.” On Monday that is exactly what it felt like physically; like my load had been lightened. That heaviness I had been carrying around, gone. Once again, perfect strangers wrote to say they had been praying for me, many of them offering beautiful and supportive encouragement, assuring me I would get through this. People emailed my mom back all with truly inspiring and beautiful things to say, some as succinct as “Hang on, you’ll get through it.”  As I read I cried, overcome by gratitude. But more importantly I believed what people said. I was assured I’d see the other side. With each message I felt a swelling warmth in my chest. Suddenly it struck me that the miracle was not that I woke up basically symptom free on Monday. It was how quickly humanity had come together-friends, family and strangers–with powerful intentions, love, support, and healing thoughts for a girl who some had never even met. It reminded me that we are in this together. We are not each one life, but an interconnected string of lives, and that when we assemble for good cause we are capable of incredible things. When one of us is pain, we all feel it somehow. When one of us overcomes, we all win. And maybe most importantly, when one of us strengthens and expands her consciousness, all the worlds consciousness is raised. We all evolve.

I laugh because in my blog I asked God for one day. Just one day of relief. Well, I was given two. By Tuesday night I felt the heaviness start to come back. My  muscles weakened and my familiar sick disposition descended on me. I know that on the outside it seems unfair. Why give her two days? Why not give her the rest of her life? And if God were a genie and life were a two-hour movie, that’s probably how it would work. But we are living in the midst of eternity here–our lifetimes in that context are a flash, but each one brings an invaluable meaning to the whole. The lessons we learn often take a whole lifetime to get perfect, but each contributes a small piece to the universal puzzle. Anyway, in my blog I sadly theorized that maybe I was forgotten about. My symtom-free two days reminded me ever so gently that no, I was not forgotten. This is just the work I have to do right now. A lot of it from bed. Seemingly on the outskirts of the high-paced world, the 9-5 jobs, security or fortune or fame. But just because you live a lot of your life in solitude does not mean you’re alone. Just because you don’t wear fancy dresses and attend important events doesn’t make your life’s work or contribution any less important. We all have very individual paths and under closer examination the design reveals itself as perfect. When I consider that my passion is and has always been writing, something that was absolutely untouched by the illness except that it gave me my platform to begin, there’s no question that there is a higher intelligence who’s job isn’t easy either. I doubt the creator likes to see his masterpieces suffer, but that’s the difference between us and him; he can see the finish line and we can’t.

To keep living takes a massive amount of trust on our part, especially in the midst of pain and hardship. But it’s that solid trust inside me that tells me to keep going. That’s what the voice is grounded in; trust in the grand design. That this is the work I have to do right now in order to become whole, to evolve, and to find inner peace. I often fantasize about a life that I don’t have. One where I wear pretty dresses and attend charity dinners and I charm people with gracefully told jokes and stories. “Tell us another one Mary! You’re the greatest story-teller ever!” they all yell.

That Mary Is One Hell of a Story Teller!!
That Mary Is One Hell of a Story Teller!!

Haha. I have no idea why that’s what I fantasize about, but it is. And maybe one day I will dress up and I will do those things at a party–but for now I need to be where I am and remember it won’t always be this way. Remind myself that I still have access to life’s greatest treasures whether I’m in my grandpa’s pajamas or in a dress at a fancy party: Love, passion, friendship, community, creativity and hope–they’re all still there. I am still young relatively and I’m still figuring it all out. I don’t know exactly what I believe in, I just know that after last week, I believe.

And I hope you do too, because you were very much a part of it.

Health, Happiness, Miracles.

Dog Spelled Backwards

 

Help. I’ve fallen. And I can’t get up.

I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.

 

Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.

It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.

I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.

 

All my classy PJ's were in the wash.
Thanks for the clothes Grandpa!

Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.

 

When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.

Health and Happiness and Keep On Keepin On.