An Extremely Obvious Revelation

Captains Log: Day Four Million and Six. Still crashed, I guess. At what point do you stop considering yourself crashed and just accept that this new garbage state is just.…your new normal? Everything is acting up, like normal. But it’s been the challenge with my heart, wanting something it cannot have, which I’ve struggled hardest with. I don’t typically spend too much time in the “greener grass over the fence” world,  but something in me is willing hard for a life I don’t have. It’s also being imaginatively precise in the world it wants that cannot exist.

I’m in a rut, if that wasn’t clear. 

I’m reflecting on how it all began. I can at least say what helped inspire it: Ignoring what I knew I needed to do, which is one of those human behaviors I will never understand. My morale was low, which was linked to my motivation. It was still there, but it dissipated a little every day I went  on deflecting from the thing that would do me some good: writing. It was like a shooting star that burst in a short lived flash of light. But it would fade just as quickly if I didn’t act while it was illuminated. Then the sky would go back to black, and having failed to act, the brightness dwindled, as did the likelihood of me writing all the things pleading to be let out. 

That’s why they say strike while the iron’s hot, I suppose. Again and again and again I’d have the spark and ignore it. Or put it off. Or write in my notebook, which is something better than nothing, but I knew it’d little good there. It didn’t risk anything or challenge me in a way that makes me try harder whether the quality is better or not. Saying “tomorrow is just as good as today” became a dangerous motto I obeyed and it’s not even true. I was kidding myself and knew it inside, but I still couldn’t pull it together. 

Instead I worked on three sudoku puzzles from a Southwest magazine I snagged on my flight home from Miami. I made some dumb deal with myself if I could finish all three than I could trust my brain. I finished the Easy, then worked on the Medium for what probably took far too long, but finished, and then spent over a week on the Difficult until I messed up somewhere and it was impossible to fix. So I threw it out finally, assuming OK, now it’s time for writing. But then I studied Sudoku strategies online instead, which I’d never done before. Interesting stuff.

I went to Miami in the first place to see my real life hero, Dr. Nancy Klimas. I honestly feel little a star struck when I see her and I just want to run up and wrap my arms around her bear hug style and lift her off the ground. Do a twirl with her raised in the air! Hah, what a sight. She ordered a lot of blood work and neurotransmitter tests. One interesting thing she suggested was the use of a tens machine as means to stimulate the Vagus Nerve, which has gotten a lot of press in the MECFS world and has helped people with varying symptoms. One of those is headaches, and since I’ve had one of those for the last decade, I’m really hoping it will help provide some relief. 3 times a day for 15 minutes. I’ll report back. 

image
Real Life 🦸‍♀️ Super Hero

It’s always hopeful to see a doctor who specializes in your disease, particularly when the other seven that you see have never heard of it. They’re doing your best, for obvious reasons, there limits to their help. Seeing Klimas was cathartic in that regard and other levels as I’m hopeful some of her ideas will help with multiple issues I’m having resolve, or at least improve. Particularly crashing almost every day about an hour after I awake. Also the cystitis and peeing every 10 minutes. And the daily migraines. And five months between periods. So, all of it, basically.

As for the rut, I think an envy began sprouting in me that at first I wasn’t so aware of. It started in a very dormant way, even though I was really enjoying my trip in Miami. I probably had more fun than I’d had in all of 2019 combined, which could fit in a thimble. It began with a very attentive observation of my surroundings, of simple things actually, and seeing up close how people who have their health are able to live and operate, day after day. I don’t know why this time I was so conscious of it and in such awe. On a general level at all times, I am amazed what man in a state of homeostasis can do. Maybe because 2019 had been such a burning trashcan of illness and life that I forgot what real health looked like. I was so amazed on one hand, and on the other, the envy for their ease of capability grew in me like a weed. 

IMG_0965
Singing the Beastie Boys

The logistics of family life, especially with four young children, is extremely difficult and doesn’t look easy. But it does look fun, too. I came from a family of six, so maybe some part of me naturally feels at home with that number. But to watch reliable bodies and all they could do became compelling and incredible. I’d listen to my brother and sister-in-law talk about plans, and I think I literally forgot about the concept of planning as a real thing. It’s not impossible and I still attempt it in my own life, but it is always tentative. Always. I am never, ever, a sure thing.  

Not a second thought about showers, grocery shopping, cooking big meals every night, meeting friends for dinner. How involved their social life was! I mean, they had one. How at ease everyday chores and tasks and errands (Or even just delegating them) were— not that they didn’t require work, but that no one was forced by potential physical repercussions to choose whether they would shower or grocery shop. They were solid people. They accomplished so much each day and were dead tired by the end of it, just when I’d start to feel a little more awake, strangely. They went to sleep with warranted exhaustion, and the sleep actually recharged them.

My sister-in-law was so alive in the mornings, which is incomprehensible to me. Both feeling alive at all, and being functional before 2 pm. When she wore workout clothes, it’s because she actually worked out. Not because she was a poser like me who wore leggings because sometimes just the thought of denim against my skin makes me cringe. 

I had truly forgotten what the privilege of health affords you across a day, a week, in all your many roles and expectations. I was amazed and then maybe progressively envious? Can’t say, but typically I’m overwhelmed watching the pace and the volume and the largeness of healthy peoples lives unfold. But for whatever reason, I finally felt it deeply in my bones, as though it’d been welling up there for years and I’d just never said it out loud despite it being glaringly obvious. To the point of it being useless to even repeat here. But it’s still flapping around in my brain, and I want to release it.  I’m warning you, it’s stupidly obvious: I am so, fucking, tired, of living life with this illness. 

How’s that for a Ted Talk?

It’s still there for some reason. It’s obvious, I get it, everyone in the world gets it– why it continues to circulate in my psyche like some grande revelation is beyond me. Maybe it just begged to be said plainly, without a “But” behind it or any justification for why having it has made me better in other regards! No, plain and simple. Just say it and leave out the decorum.

Pardon the F bomb, that’s just how the thought plays out. I write about hope and working with the hand you’re dealt and discerning ways to find meaning in the parts of life you don’t control. And suddenly it all faded quietly into the background. I felt like a hack. I looked around and could feel viscerally how much I wanted what I could not have. What was not mine to take. 

I can’t stay in that space long, even though I’ve still felt way a while now, though maybe not with such fervor. Zukav says that “The splintered personality must always choose between opposing parts of itself. The backbone of evolution.” I doubt it grows me any to want for what isn’t real. To live in a dimension where bad things happen without timely ways to always understand them. I am constantly walking the line between hope and despair. It is far easier to despair, I admit easily. I have to choose hope, consciously, with the intention that even if I can’t see the meaning in all of this yet, it will be revealed. Or at least if I’ll find salvation and treasure in it, the way I would try to in a life with my health. I can’t accept it’s all for nothing. I won’t.

Still, some days, some periods of time: So. Fucking. Tired. OK, won’t say it anymore. My mom will wag her finger.

Interestingly, I still had a great time in Miami. It wasn’t that I felt better there–I was crashed most the time. It was more of a simple enlightenment that being sick around people you love and like is better than being sick on your own. Obvious, I know. I  stayed in bed, sleeping on and off until around 3:30 pm. That’s when Olive and Miles (7 and 4) typically came home from school, and I’d reach down far for some strength and get up to greet them as they walked up the driveway smiling or skipping or holding art they made as though it were a proud flag.

img_0978
And the Tony Goes To….

It was nice being around them. I really do treasure my role as an aunt, even if I can’t do more and play longer without tiring out. I was able to see Olive’s first performance in a play: School Daze. It was about school, and how school is hard. Can’t disagree with that. It felt so fun to go and cheer her on.

I’d meet them at the beach, but it’d be four hours after they’d already been there. But that’s the great part about kids (and dogs.) No questions. No backstory required. They’re just glad you’re there.

A beautiful part of children is how adaptable they are. They don’t seem to mind that I’m supine 80% of the time we’re together. Kids can tire you out, but they can rejuvenate you too, much like the ocean. Luckily there, I had both. And those two made me feel more alive than I’d felt in a while.

I like these pictures because they fit in my fantasy world where things are normal and that’s fun to pretend sometimes.

I guess being around the whole family helped re-tether me to the world. Seemed I had floated away from it, or maybe it was the world that had floated on without me. Either way, once I was home, I didn’t bask in the solitude or the quiet, like usual. Reuniting with Monty always makes me happy, and is the symbol of “home” to me. Otherwise a harsh reality settled around me that suddenly I was sick with no one around during the day. But it didn’t feel like respite.

In Miami I would often just listen to Estee on the phone, or working on some project, prepping food for dinner that night, caring for the twins. As my grandma would say “She’s a busy body.” I got used to the background sounds of people living, and despite not participating in it, it was comfortable to me hearing it go on. Comforting. A reminder that life moves continues on, no matter what you’re wearing or what room you’re in. Of course that same fact when you’re in the same four walls for months can feel worse than unfair. It’s a pitiful thought, but it feels very real that the world doesn’t need you at all. (That is NOT true and I don’t believe that in any form at all. It’s your ego messing with you, and it’s dishonest. All of it)

I guess the drastic change, whether it was the lack of kids to make me laugh or of late-night life talks after the kids went to bed, they all made my life at home feel disconnected. My mom had left for a trip to Colorado the day after I returned and I suppose what I normally call solitude began to feel more like isolation. I had this feeling that I’d probably had enough solitude to last me thru another decade.

I surpassed my wordcount by about 5,000 words. I have too much to say because I put this off too long too long and that’s what happens. I’ll let this fly and hope things lighten up inside me, then I’ll do a little better by saying more with fewer words next time. That’s the ticket. Between now and then, Stella is working on getting her groove back. I’ll get there. I always do. 

Health, Happiness, Grooves

Adjusting the Perspective on Pain

What is it about Winter?

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider.  And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here)  They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

6.jpg

The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS. 

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Health, Happiness, Perspective

P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/

Push the Boys Into the Ditch; My Grandma’s Perfect Love Advice.

Do you ever go through something that is both presumably necessary but incredibly hard and subsequently feel the weight of the world baring down on you as if the gravitational pull changed and it was all on account of you doing something possibly stupid but possibly necessary? Me either, life is easy and fun!

While my health has to continued to sustain for reasons I can’t entirely know for sure, I’ve had some personal experiences which are difficult and painful and every time these things wash over me I examine why life has to be hard (as if I actually expected it to only be easy) and then I wonder does life actually have to be this hard or am I just doing it wrong?  I don’t know the answer to that one. I guess we can only learn as we go. I find myself telling Monty to never fall in love because it leaves a mark on every part of your life and ultimately it changes you, whether you wanted to or not. But then I watched the neighbor dog humping his owners leg and considered that obviously the alternative isn’t so much more grand. Though there’s an appeal to that leg–it’s not going to keep you up at night with heartache and strife. Or maybe I’m too quickly assuming here, maybe I should ask the dog.

Yeeeeah Legs!
Yeeeeah Legs!

Of course this fantasy that life would be easier and less painful without this or that is just that: a fantasy, a slight rejection of reality. But maybe more detrimentally, it presumes that somehow as humans we know better, and we know the answer to what would make life easier or more tolerable. As if life isn’t some ridiculous, complex mystery that has an infinite amount of working parts we as finite humans can only momentarily grasp, if ever at all. And I’m not struggling with an idea that every human for thousands of years hasn’t experienced pain from and questioned the value of. We’ve all been through it. Wondered if the pain in the end was worth the utopia in the beginning. I like this quote about it: “Love is the voice under all silences, the hope which has no opposite in fear.” by e.e. cummings. Would I really choose an option where falling in love wasn’t part of the equation? Duh, no. That’d be insane and cowardly and boring. Love is a remarkable gift, with perhaps its best quality being that of illumination. I like how sometimes it picks us, even when we’ve turned our backs on it or given up on the idea. I like that it takes us places we wouldn’t go on our own. I like that it makes even a worn-down curmudgeon feel giddy and silly and do things he thought he’d never do. I’m thinking of my grandma now, who at 86, has a man named Harold (a few years her senior) who is madly in love with her. I saw it with my own eyes. They would marry if only she’d accept.

Harold had been living at her facility for a few years when she moved in. He has a military haircut I imagine he’s had for 50 years. He speaks concisely and says what he means. There is density to both his physique and his words but a subtle softness you pick up on behind it. Harold had been sitting at the same table in the cafeteria for years, often alone, seeming annoyed by even the thought of socializing and especially at watching others partake in it. Sometimes he looks like he wants to press mute or fast forward on the whole charade; a sentiment I’m familiar with. He eats and drinks the same thing at his meals every day in a very particular order–part of the routine involving peeling his fruit and sharing half of it with my grandma. The ending involves hot tea with a lemon at a very high temperature that if not fulfilled, as sometimes happens with new employees or forgetful old ones, gets sent back. He waits. Sometimes he scoffs, others he sits in silence. I ate with them a few times last summer and couldn’t help but think of Jack Nicholson ala As Good As It Gets, with a little less show but just as much intensity.

Harold would be the last guy you’d expect to get all doughy-eyed and follow a girl around like a love-sick puppy. And yet, here he is. Three years in to my grandma’s stay at The Atrium, Grand Junction’s finest assisted living home, and Harold has fallen over in love with her. I’d like to say I’m exaggerating for literary purpose but truly I am not. I saw it with my own eyes. It started as a joke in the family– OOooooh Grandma! Hanging out with Harold again?! Grandma has a boyfriend! Hehehehe! And then slowly it was revealed to all of us that for him it wasn’t some crush, he’d truly fallen for her. He switched tables to sit with her. Even thought that meant there’d be a certain amount of socializing. He comes over all the time to watch Westerns at her apartment. He on the couch, she on the recliner. Of course half the time they fall asleep 10 minutes in, but no matter. The man has it bad. And something about it completely excites and inspires me. It turned the tables on rules I had stupidly self-made on love and life and age. Very stupidly. I am constantly discovering how much I don’t know. But I love this story. I love that the employees there asked my grandma what she had done to Harold. What happened to the old crotchety man rolling his eyes in the corner? Now he was partaking in group activities? Calling her on the phone? Feeding the ducks? Switching tables?!! While my grandma tries to insist they’re only friends, (oh my God life never changes) and that she finished that phase of her life after my grandpa died, it’s clear she’s enjoying the time with him as she should.  Albeit rejecting his proposals and insisting he partake in more bridge games. I love it all. They’re is something truly hopeful in all of it. Anything that flips our predefined notions on their head can only be a good. It’s illuminating. I imagine it’s that way for Harold, too.

Harold, My Grandma, and her best friend Myrtle, playing cards on a wild Friday night last summer.
Harold, My Grandma, and her best friend Myrtle, playing cards on a wild Friday night last summer.

Maybe it’s different for her. She clearly likes him being her friend and enjoys the companionship. Perhaps in this last stage of their lives, my grandma’s old stoic German ways will prevail and she’ll reject the romantic advances and they truly will be just friends. At 90. And that’s fine too. Of course I’m secretly hoping that one day she’ll weaken, she’ll let him sneak a kiss. Maybe she already has. I don’t know. But watching this all unfold fills my heart up with something good. Something hopeful. My grandma’s advice to me has always been that boys like girls who are mean to them; that she hardly ever let a boy get too close or too much from her. To work on your own life and don’t design it around some boy. And I knew as a young woman she had a lot of interested suitors and broke her share of hearts. In fact she pushed her first boyfriend into a ditch when he tried to kiss her, which she said of course, only made him try harder. And that’s been her advice to me; to push the boys into the ditch and watch what happens. Honestly I take her advice to heart. I love listening to her old stories. Her simplicity about life. She is a very happy person who loves her life, and so for me her advice carries a lot of water. I know they don’t have the internet at the Atrium, but Grandma, if you’re reading, give Harold a kiss for me. (I mean you can’t push the man into the ditch–he’s 90!!) For whatever reason watching the two of you, and specifically him, has been a very good thing for me, and I’ll probably always carry it with me.

Health, Happiness, and Boys In the Ditch

Grandma Selfie Yeah!
Grandma Selfie Yeah!

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

To Be a Girl.

I must admit, I really love being a girl. I’m not sure most people would know that considering a few things. I’m not overwhelmingly feminine. I don’t officially dress the part that often. And my manners slip up a lot. Maybe I’m thinking more about what it is to be a Southern Girl, but I love being that too, even though I know I don’t always do the South proud. Still, it’s in me. And I like that it is.

A disappointing factor in being sick is that my wardrobe has taken quite a hit. I used to work 5 or 6 days a week, and I enjoyed putting together my little corporate outfits each day. It always felt like a part I was playing anyway, so I took time for the appropriate costume. There’s pride in getting dressed for work each day. Even if it was a crappy day– bad weather or crappy co-workers–whatever it was, there was still some amusement in dressing each day. Looking my best. It was some part of the job that I could control. And I indulged in looking good and smelling good and hearing my heels click on the gallery floor. There was some identity, among pride, in the ritual of all of that.

Now I don’t have somewhere to be 5 out of the 7 days a week. I don’t have to wake up at some ridiculous hour–which let me be clear, I don’t miss in the least. And while I don’t miss hitting the snooze button 6 times before forcing myself out of bed and dragging myself to the shower, I do miss the ritual of working. The wardrobe it required. The pride in looking good and knowing your purpose and getting a paycheck every two weeks. Clear parameters. Certain expectations. Consistent and adequate wages. I realize that while you’re working it’s not uncommon to be fantasizing about not working, because that grind–it’s a lot. Every day. All day. The same people. The same setting. It can be overwhelming in its sameness.

While I did enjoy the ritual of working, I knew I couldn’t stay there forever, mostly because it didn’t do a lot for my soul. The work was not a challenge creatively in the least. I told myself that I could work full-time and do my creative work on the side. I could write and draw at night or on the weekends, but I was so dead at the end of each day, so spent by the weekends, I always spent them half-conscious in sweats watching mindless television or attempting to write but tiring out quickly. Maybe some could do it, but it was certain I could not. One day I would have to leave that job if I wanted to explore the more creative life, but I never thought it would be involuntary. It was–due to my health. I wonder how long I would have stayed there had it not been.

Anyway, now I am sort of living the creative life. I follow my inner-self a lot which is a privilege, I admit. I’ve learned songs on my dads guitar. I paint watercolors when I’m bored. I watch French movies to brush up on my French. I write. I read. I rest. Repeat. I think it would be easy to look at my life from the outside and say it looks easy. And to an extent it’s certainly easier than my scheduled life I used to lead. There’s no calling in sick or feeling guilty about not performing well. But also, there’s no paycheck. No official schedule to follow or tasks to complete. But I have a feeling those things will come again.

It’d be easy to fall down the black hole of daytime TV or something more depressing. I work hard to keep things moving. To strike when the creativity is hot. To find newness in each day. I consciously work to keep my life from going to stagnant–that’s where a girl could get into trouble.

Since my new life doesn’t require any certain wardrobe, I often joke about the clothes I wear and my general appearance. Not to mention, the whole showering and routine that follows deal totally exhausts me, so it’s often a matter of energy reserves. I used to be so polished. Now I leave my hair curly and wild and am wearing a stretch cotton tank top with a cat wearing sunglasses on it. This of course is acceptable, as I don’t really have visitors or male suitors. Haha. But still, as much as I have to strive to keep my life moving, I think I need to remember that I am a girl and I can look pretty when I try. And I really enjoy smelling good. I don’t have official reasons to make those things happen anymore, but maybe just being a girl is reason enough.

Like last night, I painted my nails this bright red. And it really thrilled me. Red nails! The thrills of being a girl!

Glamour on a Tuesday.
Glamour on a Tuesday.

Laughably I take pride in being able to give myself a manicure comparable to the professional ones. Since I’m broke I can’t afford those things, but I can do them myself and so I do. I also bought this knock-off gold watch for $20 dollars which I really enjoy wearing. The best part is it fit perfectly, I didn’t have to remove any links. It makes me feel glamorous, with these red nails and lipstick too. Sometimes when I’m feeling good, I take really long bubble baths, I spend a long time doing my hair, I put on full makeup, and I spray myself in perfume. And then I go nowhere. I strut around my house like an idiot, just like it used to be–a girl playing dress up. Or I pretend to go somewhere and take photos like these:

Here's Monty and Me and the Eiffle!
Here’s Monty and Me at the Eiffle!
And here we are at the Aquarium!
And here we are at the Aquarium!

Monty gets nervous because it’s gotten to the point where if I put on pants he knows I am probably leaving. But I don’t leave. I clean the house. I indulge in the mirror. And still, even though I have nowhere to go or no one to see– I revel in being a girl. If even just to remind myself that when I try, I can still be one. One day I will have places to be and people to meet and parties to attend, so I’m just making sure I still know how. How to be polished. How to walk with poise in heels. How to look the part. How to be a girl.

Health, Happiness, Remembering.

Cutest Passport Photo in the History of Time?

...
The Mona Lisa of Passport Photos.

Sometimes when I’m sad or frustrated or just looking for something to make smile, I look at this picture: It’s the passport photo of my 1-year-old niece, Olive. It’s funny how just an image can cheer us up or change our energy. Any photo of my nieces tend to brighten me up, but this one in particular makes me happy. Cutest passport in the history of time? I think so.  Some things are too cute, words will only spoil them. So I’ll leave this one alone.

Health, Happiness, and Indecently Cute Passport Photos

The Only Gift to Give

(me)
(me)

For as long as I can remember, my mother has never been one for presents. Specifically cutesy presents like mugs that say # 1 Mom! or trinket-type gifts like the kind from the Hallmark store. I guess at her age and after four children, she’s accumulated enough “stuff” to last until her end. She gets it. She’s the worlds greatest mom. Enough with the mugs already! It’s not that she isn’t sentimental, because she is. It’s more that now, those $20 items from the mall just seem gratuitous. She will always say “Thank You” to a gift but I know she’d rather we save our money or donated it to someone or something that really needs it. It seems like free, homemade gifts have always been her favorite. Since I’m living under her roof and on her dime, it wouldn’t make sense to buy her a gift anyway. It’d be with her money! I’m like the little drummer boy but all I have to give are words. “I have no gift to bring Pa Rum Pum Pum Pum!” Anyway, I guess every mom just likes to know they were thought of in a meaningful way. I’m not a parent so I couldn’t know, but I’ve heard it’s both the hardest and the most rewarding job on the planet. Most of the time your efforts go unnoticed, or under-appreciated, or unrealized until decades later, and it’s good to set aside a day to let them know: We noticed the work you did– and thank them for it because it’s a job well done. Here is my totally affordable thank you to a mom very deserving.

I want to say that whether you knew it or not, I’ve been taking notes from you. Because more than someone who performs countless motherly duties each day, a mother is also simply a model human being for her children. Everything you were doing as an adult, were things I observed and learned from.  Watching you navigate through dark times. Noticing your courage and grace when things fell to pieces. Watching you keep going when it would have been easier to give up. Those are all things I will carry with me–forever. I never felt too young to take on the lessons you were learning yourself. If I am ever a mother I will hope to pass those things down to my own kids. But as a singular human being, I will keep them with me and they will guide me long after you’re gone.

Perhaps the best thing a kid can tell their mom is that they’re happy. The last few years have been extremely difficult for me. And I know that as a mom, having to watch your child suffer is even more painful. So often she told me she wished she could go through the experience for me, and save me from the pain. I think most parents would agree. They’d prefer to take on the hardships themselves then have to watch their child go through it. But as much as parents want to protect their children, hide them from the pain and perversions of the world, they also have to trust that they have instilled enough love, value, self-esteem, and wisdom in us so that we may not run from the hardships, but that we may find our way through them, and come out of the other side intact–wiser and stronger, not bitter and broken. I want to tell my mom that even though life has been at difficult, sometimes unbearably difficult, and I’ve wondered how I’d get through, that I would reflect on her life and remember all of the hardships that she had emerged from. The memory would remind me that I could do the same. I’ve always known that at the root of everything, I am loved. Unquestionably. Unconditionally. Consistently. I have always known that. And that knowledge makes a difference to a kid. Whether we’re 3 or 30. I wonder what the world would be like if every child knew that. In times where I didn’t feel like I could keep going for me, I knew that I was loved enough that I would keep going for her, for them. And that guided me. That kept me going.

I know that  watching a child in pain is almost unbearable for a parent. I could see it in her eyes when I was sick and incapable of many things last year. It hurt her too. But I also know that there are few greater feelings than a parent watching their child experience joy, find happiness, emerging out of the other side of darkness. I want to tell my mom that I am happy. That I’m OK. And no matter how hard my life gets, I will always be OK. Because look what we’ve already made it through! It used to frighten me, remembering how hard life can get. But now it strengthens me. It’s a choice; I can think of either the rough times and be afraid or remember that we made it out of them and be reassured. I know that being a mother and worrying go hand-in-hand, but I want to tell you not to worry. I am OK and I will always be OK.

I think in the end it doesn’t come down to how many shirts or mugs or magnets you have in your drawer of trinket gifts. Those are things and things are temporary. The love and the lessons you handed down are what is forever. The love you gave through happy times and sad times. The wisdom you exuded when it felt like the world had turned its back on us. Crying when you need to. Laughing when you need to. But never turning bitter, never giving up. All of these learned responses are what you handed down. They are what we will hand down. And the next generation will hand down. And that’s the thread of life being sewn across the world. Nothing temporary about it.

I guess all of this is to say, job well done. Your work will live beyond your life.

Love,

Mary (and Monty)

P.S. Since your other children are out of state, they each wanted to draw you a picture for today. In case you forgot their age judging by the quality of their art, I’ve included them for you.

Health and Happiness and Happy Mothers Day!

This is from your oldest son Doug. He is 35 years old.
This is from your oldest son Doug. He is 35 years old.
This is from your son Nick. He is IV league educated.
This is from your son Nick. He is IV league educated.
This is from your daughter Amelie. She's a designer. (Age 32)
This is from your daughter Amelie. She’s a designer. (Age 32)

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

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.

 

An Animated Version of My Sick Week.

I’ve finally reemerged out of my latest crash. I’m kind of tired of dedicating words to what being sick is like, so instead I’ll do it with GIF animations. Here’s how it went.

Monday: I tried to get out of bed, but it went something like this.

By Tuesday I was still lifeless and sick, so my mom brought  food to me in bed, which went something like this:

By Wednesday I’m  like this is crap! I’m going outside to play! Which went like this:

So back to bed I went, like this

Then I woke up like 20 hours later like this:

And then someone with enthusiasm calls and says “Hows it going Mary?!?!” and I respond “Great!!!”

Then after a long day of exhaustion, I try to go to sleep, which goes something like this:

Then alas I get to bed, and when I wake up, my body feels like it’s done this to itself all night…

Being awake feels crappy so I go back  to bed, like BYE WORLD!!!

Then I wake up to Bill O’Reilly playing from the living room…

Meanwhile Monty is bored to death with his owner so he decides to go out in the world on his own…

Then finally I wake up with enough energy to get out of bed and be a functional human being!

Which means it’s a PLAY DAY FOR MONTY!!

Woohoo!!

Health, Happiness, Sick Weeks.

White Girls on Facebook: Part 2.

1. Write the name of an alcoholic beverage and a question mark followed by “Don’t Mind If I Do!”

Ahhh much needed.
Ahhh much needed.

2. Talk about how INSANELY busy they are and the massive amount of things they have to do! So much so they spend the next two hours on Facebook talking about it!!

3. Use “LOL” questionably and in an overabundance. “I have cancer lol” “Me too lol”

4. Some version of this picture, allll up in your biz.

My legs enjoying the beach.
The bottom half of my body enjoying the beach.

4. Talk about preparation for tomorrows workout, take a picture of today’s workout, or reflect on the burn from yesterdays workout.

5. Delve into the recent cold they caught, list all the corresponding symptoms of said cold, then tag a photo of Dayquil and Hot Tea. Potential Caption: Yucky sniffles AND a sore throat! :(

6. Take a picture of herself scandalously dressed and tag it with this caption: “Hey you.”

And by you I mean me.
And by you I mean me.

7. “Today I am thankful for gratitude lists.”

8. Attempt a really inspiring, self-written life quote. “Never take advantage of anyone. Life is short but regret is forever. Always thank your lucky stars and never forget to dance. Even in hard times, the sun will shine through the night.”

9. Talk some major smack about football and/or their fantasy team. Then talk some major smack about The Bachelor.

10. Take a picture of basically anything and caption with: LOVE. <3 <3 <3

LOVE.

12. Girls Night Out!! Prepare for pictures, captions and a play-by-play before the night is halfway over.

11. Something borderline horribly offensive followed by “Just Sayin.”

13. Picture of the hubs taking a nap with the baby!

LOVE.
LOVE.

14. Vent a frustration beginning with WOW. “Wow, I was under the impression that a STOP SIGN MEANS STOP.”

15. Duckface. Forever and Ever and Always.

Yall come to the party I'm having by myself in the bathroom!
Yall come to the party I’m having by myself in the bathroom!

Health. Happiness. Facebook. GIRLS.  <3

Snow, Christmas, Crash, Repeat.

I’ve attempted to sit down and write multiple times this week but my eyes continue to grow heavy and I fall asleep with the light of the monitor on my face and an incomplete sentence waiting. Most of the family left to their respective homes on Sunday and it appears my body waited for them to leave to go ahead and crash–which is nice of it actually. I made it through Christmas Eve and Day with adequate enough energy and I was really grateful for that. If being sick now is payment for what I experienced with family this Christmas, then it was well worth it. I just love those crazy animals!

Christmas is by far my favorite Holiday. The lights, the soundtrack, a reason to be kind, the eggnog, the food and the family. I treasure it all. Since we spent this Christmas in Colorado, I began praying weeks in advance for a White Christmas; something I haven’t had in many years. It just makes everything that much more “Christmasy.” When I awoke on Christmas Eve, I saw that my prayers were heard. We had every type of snow that day. In the morning it came down softly. By the afternoon it was big, slow flakes. On the way to Mass it was small gusty snow, fast and twirling. I felt like a kid again. And being that we’re Southerners who are rusty in the art of driving in snow, we went about 15 miles per hour on the way to Church, leaving an impromptu parade of backed up traffic behind us. But you can’t get mad about traffic on Christmas Eve– Not in your Sunday Best while the sky is falling. I received more than I asked for; 6 inches to be exact, which is pretty substantial for this town. It continued to snow into the night, revealing a very real White Christmas the next morning.  My favorite part was taking Monty on a walk that evening. The night sky orange from the clouds reflecting lights, the atmosphere hollowed; a padded cave where your steps crunching the snow is all you really hear. It almost demands that you stand still, that you look up. There is a tangible quietness to snow and it was a real gift to experience it again.

Monty in the Snow, Night.
Monty in the Snow, Night.
Yum.
Yum.

I also really like this time of year because there’s such a sense of hope and possibility with the New Year. On a technical basis, it’s minor. It’s just a change in numbers. A 2 becomes a 3. But for human beings, where space and time matter, it marks an end and a beginning. As the numerical date changes, it’s wise to reflect on the past 365 days and think of what you want the next 365 to look like. Of course, as the mystics would remind us, there is no past or future. A New Years Resolution can only begin and mean something right now. Right now is all there is.

I didn’t make a New Years Resolution specifically, though I love the idea. I reflected on New Years Eve 2010, which I spent at my parents house, and it was Monty who I kissed at midnight. The next few days would involve a heavy crash and a hospital visit and some major contemplation about what to do with my life that I was slowly losing control of to health. I remember that last New Years Eve I thought well, at least the worst year of my life is over. I thought 2011 would be my sickest year, and that I could stuff it far away somewhere. Bury it. Burn it. Just put it out of sight and move on. And then I met 2012. In many ways 2012 ended up being my toughest year. Health-wise it was one of the worst. Emotionally it drained me. Personally it humbled me. You’d think after years of being sick I’d have it all figured it out by now. But I’m still learning. Feeling my way through the dark parts to find meaning, treasuring the good days, and holding out hope that this won’t be my life forever. 2012 was deeply hard, but another way to look at it is this: I survived. I made it. It’s over, but I’m still here. Like Caroline Myss says, “As long as you’re still here, you’ve got purpose.” I may be sickley and often seemingly useless, but I am still here, and I do feel underneath my lifeless body that I still have a lot of work to do. And if most of it comes from bed, so be it.

There’s a few other lessons I’ve learned in 2012 that I’ll take with me into 2013 on my way. Wherever that is.

I’ve learned how to be a house guest: That most people consider themselves clean and organized, and that every person’s definition of those two traits are absolutely different. All in all, people appreciate when you make your bed, so do it whether your hosts do or not.

I’ve learned that old ladies don’t like dogs without leashes.

I’ve learned that violence is not the answer and instead of trying to punch a fly in the face you may benefit from pausing and reflecting instead.

I’ve learned that even if my body is worthless, my mind is not, and it’s still possible to achieve things from a couch, or a bed…in pajamas.

I’ve learned that even if they’re the right thing, breakups hurt. They’re hard. Sometimes it really is time that heals those wounds best.

I’ve learned that every person is fighting a battle. I used to never talk about my issues, or even write in the first person for that matter. Now I have a public blog with everything out on the table and a lot of I, I, I. But most people do not. They keep problems and pain inside, protecting a sore spot somewhere, which is important to remember when they’re flipping you off in traffic or cursing your name from across the street. We all have issues, and it’s all OK. In my darkest times I’ve found reassurance that no one is alone in their pain.

I’ve learned that the best doctor is Dr. Mom.

I’ve begun to learn to swallow my pride. To accept help with grace. To admit when I can’t do it on my own. And that there is much more freedom than pain in those moments. There is real ease in surrender.

I’ve learned that regardless of the question, the answer is protein.

And that out of all 25 pills, nothing makes me feel better than laughter. Mine and others. For real.

I’ll take all of these with me. Into the future, to a galaxy far far away. Or to whatever state I end up in next. I don’t know what 2013 has in store for me. So far, I’ve basically spent it in bed. But that’s OK too. Because regardless of what 2013 brings to the table, I promise to keep on laughing, to keep on joking, and to keep making fun of the tragedy that can be life. In almost every punch life throws, we can laugh or we can cry, and in my experience, it’s just way more fun to laugh at it all. In short, I’ll keep taking 25 pills and making lemonade…or something like that. Happy 2013 yall.

Health, Happiness, 2013

You’re Doing It Right.

At one time, each and every human being on the planet was a tiny baby in a mothers arms. In front of him lay a pristine and untouched future, where anything was possible. One thing will shape the direction and vibrancy of that future more than any of other thing; love. From whom he learns it, from whom he does not, how he is taught it, and that he experiences it in its most authentic and pure form- unconditionally. Money is no matter, health is no matter, religion, beauty or brains. Without the message that love sends- the gentle reminder that who you are matters- all of these things are fine but rendered useless if they are anything but anecdotes to a love-filled life.  There are many ways to measure a life, and many definitions to the word success. You don’t have to go far to find the richest people, the famous people, or the ones deemed very important. And they will often gladly share their secrets to what we call success. But behind numbers and cameras and curtains is a very basic human need- not desire- that we all share no matter what characteristics separate us. We have to have love to evolve. And we have to give it to surrender. And we have to lose it, at least once, to really know who we are. And when we find and learn to love ourselves wholly, then might we love others the best possible way. If we haven’t used it to fill holes, if we haven’t given it to get control, then what we’ve done with love, we’ve probably done it right. 

Dude, I love elephants.
Who Doesn’t Love a Tea Party?
The young lovers of Moonrise Kingdom. Have you seen it yet? It’s good.
Bears Love Each Other TOO.
Walrus loves birthday cake.
Monty and Mikey may or may not love when I dress them in towels.

Health, Happiness, Love the Right Way.

The Day I Tried to Punch a Fly in the Face.

I could tell you a lot of things about my life right now. That once again it’s 4 am and I can’t sleep. That once again Monty has gas but I love him too much to kick him out of the room. That the Chinese doctor told me not to take my pills today and so I haven’t. I feel the effects of it. I have some fear about it. Some hesitation. But I have the same fear of a life dependent on pills, so either way it’s fighting demons. I don’t mind being awake when the world is sleeping. So many days I’ve missed out. Slept through. Called in sick. Night is my time to take life back. I could tell you my music of choice at night when I can’t sleep–lately it’s Tchaikovsky (Swan Lake) but tonight it is Radiohead (In Rainbows) and I’m deciding whether to keep squinting hard and trying to force sleep or to give up. Give in. But since the only cure for insomnia I have found is waking up, I give in.

When I open my computer to begin, a fly immediately lands on the screen, undoubtedly drawn to the light of the monitor. When I scroll the little mouse arrow under him, he jumps. Flies away a second. Then he comes back. I play “tag” with my computer mouse and a fly for probably way too long and smile at this activity. What makes me smile more is that we have this big joke in my family that my dad would be reincarnated as a fly. He used to do this hilarious impression (often at fancy dinners, with no shame) of a fly, rubbing it’s little legs together the way they do. Half of the people laughed because it was funny and the other half probably laughed out of discomfort or something. He was such a nerd. This was his dinner entertainment. I wonder if this fly I am playing computer mouse tag with is my dad. Then it starts rubbing its spidery little legs together the way my dad used to when impersonating them and I smile bigger. Because these are strange anecdotes at 4:14 in the morning and I’d prefer to be getting sleep. But then again I would have missed the fly. The fly and all its mystery.

The Fly.

There are a lot of fly stories concerning my deceased father. Like at his funeral when my sister started crying and one landed on her shoulder. Most people would call these things silly, coincidental, random or meaningless. And that for sure is the easier belief. Faith requires energy. But it almost seems like doubt steals it. Sometimes it appears more attractive to trust nothing and be skeptical of it all. But there are incredibly real moments in my life, where explanation just doesn’t work. It’s beyond science. It’s beyond religion. It’s more along the lines of intuition, instinct, and of course, an awakened state of consciousness. It is really amazing what we can see and access when we are awake. But I think we’re mostly sleeping.

In early September I was  beginning to really resent my situation. I was physically feeling worse and worse. Everyday activities were becoming harder and I was having to rely on people more than ever. I was beginning to resent the fact that I needed help, which is, insane. I should have been thanking every star in the sky that I had help, but I was too busy being upset that my life didn’t look like what I wanted it to. I was really irritable one day. I was short with everyone. I felt angry, sad, and misunderstood. I needed help but I didn’t want to ask for it, so I resented those who tried. Fed up over something stupid, I took Monty on a walk. We walked up “the hill” that presumably was what put me over the edge after walking up it once a day for a week and then facing a monumental crash. Anyway, at the top of the hill was wide open space for Monty to run and for me to think or yell or curse. On that day I let Monty run while I unloaded some words at the universe. I cursed and yelled because no one could hear me. Except maybe some cars that drove by slowly, and at least they had a story to tell later. (Yeah this girl was flipping off the sky and cursing about fibro-vagina or something?) Pretty soon, this fly landed on my face. I swatted it away and it immediately landed back on my nose. Again I swatted. Again, it returned. I was in such an aggravated state, I wanted to punch the fly in the face. I remember thinking those exact words: I want to punch this fly in the face. When I say the fly would not leave me alone, I mean it. For at least five minutes I let Monty run, let my tears fall, and relentlessly swatted away this fly while also trying to punch it in the face. As if that’s even possible. Fed up, I told Monty that due to a CERTAIN INSECT THAT WILL NOT LEAVE ME ALONE, we had to walk home. Monty looked at me like the psycho that I was, and then we started back down the hill. The fly followed.

I started to cry. All I wanted was peace. I was so upset and felt so alone. My life felt out of my hands and I had become completely reliant on others. I’m always the guest on someone else’s couch. When will I sleep on my own couch? I’m always going to be sick and helpless. These were the thoughts that were circulating. As you can see, they are pretty negative. They weren’t helping me. They were the cyclical mental thoughts that dig you deeper in the hole. The fly continued to dart at my face and I continued to flail my arms in what I think were actual attempts at punching it in the face or more simply, just killing it altogether. But to passers-bye, dear God, I must have looked insane. Finally, near our complex I began to calm down. It finally occurred to me; our little joke about my dad returning to earth as a fly. As I remembered I yelled “Seriously dad this is NOT the time!” So now I was punching the air and talking to a fly which I was beginning to believe was my dead father. Want to be friends?

The truth is, that was the time that I needed to be bombarded. The most effective thing that fly did was make me stop. And examine. And get to the truth of my experience. I had been feeling so alone. But the truth was I had love from all sides. I had family to carry me when I couldn’t do it on my own. It was just time for me to humbly accept that not everything was going to be on my terms, and that’s OK. You can still be happy down another path. Once you stop fighting it. That fly relentlessly flew at my face for at least 10 minutes, while I relentlessly tried to kill it. But by the end it had gotten through. Something told me, something from inside, that fly was a reminder. That life wasn’t over. That I wasn’t alone. That I shouldn’t be so irreverent about living. I was still here. Still breathing. And so I still had purpose.

I approached our front door, now smiling at the events of the last 15 minutes. I had tapped into a different energy. A better energy. All thanks to that really, persistent,  annoying fly. Whoever he may be.

Health, Happiness, The Fly.

Meanwhile, on Facebook…

A few of my close friends have taken the plunge off of Facebook. I’d like to show those friends what they’ve been missing. You’re welcome!

At first I was like Woah, too much information. But then I was like what, no pictures?
Thank God!!!!!!!
Yeah!! Wait, I never signed anything.
Thank God for hard hitting local news.
Let’s talk about the definition of ‘literally’…
Totally agree.
Like this status or the kitten gets it!!!!
Thanks!!!
Kids, don’t eat the peeps.
He’ll appreciate this when he’s 20.
I don’t trust this, bro.
Totally. Wait what?
Talking about milk is fun!!!
Something happened to my friend Noah.
This sounds serious.
Health and Happiness.

The Importance of Catching Balls.

The other day I didn’t have a lot of energy (shocker) but Monty did (shocker).  I was throwing the ball for him inside the living room and noting what an expert catcher he is. Like the dude jumps crazy high and catches basically every ball I throw. So I started recording him. Because I have time to do crap like that. Then it was such a beautiful day outside I said screw it, if I can throw a ball in here I can do it outside too. So I brought him outside and recorded all the different ways in which Monty catches a ball. Then I made a movie out of it and put it to some fun music because video editing is another one of those things you can do from bed, and again, I have time to do crap like that. Woo woo. So, below is the result. I guess I realize that Monty makes me happy in so many ways and even watching him jump to catch a ball makes me laugh. Now we all get to watch him. And the angels rejoiced.

Health, Happiness, Monty

*Note, you can’t currently watch this video on a mobile device like your phone because of a third-party licensing issue with youtube…Booo, I know. I’m working on it.

The Story You Tell Yourself

It is sunrise again in California and I am reflecting on the last few months of my life. I just dropped my mom off at the airport to fly home to tend to other business. Newsflash, she has a life outside of nursing Mary back to health! I’m really lucky she was able to come. She did an incredible job as most Dr. Moms do alongside my sister and I am much more functional than when she arrived a few weeks ago. I can climb the stairs easy peasy this week–that is something new.

I feel a lot more at ease since she arrived and helped me to process some pretty heavy thoughts I was having. For one thing, I kind of thought I was dying, because I’d never felt that bad before and I imagine death must feel like something close to that. It’s pretty unsettling feeling like you can’t walk or hold a brush to your head or take a shower. Forget climbing stairs, I was scoring my days on whether I could walk to the bathroom or not. Since then my strength has slowly inched its way back. I still do very little physically throughout the day as to not overdo it, but I can feel some energy where there was none before, and for that I am really grateful. I’ve been drinking protein shakes from the naturopath doctor three times a day along with 12 other supplements alongside my normal pill cocktail. I’ve been drinking Chinese tea from Dr. Xu that tastes like ground up birds nest and getting acupuncture twice a week. My B12 was low so I even learned how to give myself a shot…in the butt. It’s impressive. But anyway, it’s helping. All of it, I think, is working in different ways and putting Humpty Dumpty back together again.

I notice that every day has it challenges. Mine has different uncertainties and struggles. Will I be strong enough to climb the stairs, will I get to shower, will Monty and me save the world?! And the truth is I just don’t know. None of us do. There is no certainty about what will or won’t happen tomorrow. There is just here and now. And I notice that when I examine my life with clear hindsight and an open-minded eye, I see that it’s not bad. Like at all. It’s actually kind of enjoyable! I’ve gotten to spend time with my sister and brother-in-law that I never would have had otherwise. I’m lucky to have a mom who was able to fly out at the drop of a hat and give me some much-needed help. I get to read and write as I please. (Even though it’s mostly from bed.) I get to spend ample time with my favorite person, Monty, and I get to put my very little energy towards something positive–writing, humor, optimism, and good news. There are a lot of outcomes of this seemingly crappy situation that are not themselves crappy. They’re more like great. And that always gives pause for reflection. But trust me, it’s easy to go the other direction. The slightest tip of the scale and I could see things very differently. Darker. And I have those days sometimes. I could say it isn’t fair. I could say this isn’t the life I wanted or signed up for. I could look at all the healthy people with their functional lives and long for that to be mine. But, like Iyanla Vanzant says, that’s a life path that doesn’t belong to me. So it’s important to let it go. As long as I try to get back something that was never mine, I will suffer. As long as I tell myself a sad story, I’ll pay.

What’s your story morning glory?

We tend to think we know best for ourselves. And many times that’s true. But the problem with the human experience is that we are stuck in the mental limitations of space and time, so it’s hard for us to see our lives in the context of eternity. But that’s the truth of existence. We’re just a small part of something much larger, and we aren’t meant to see all of it at one time. I think we’re meant to just hold on and enjoy the ride, and when it’s a shit show, like my life the past year, you hold on tighter. You pull in people to help. You acknowledge there is something bigger than you, and focus your energy on balance. On acceptance. On inner peace.

The thing is, you can’t just tell yourself a happy story about your life and you’ll be happy. You have to believe the story you tell yourself. For some reason it’s like we’re conditioned to believe the sad story more than the happy one. And through the dark times especially, it’s not as easy to find the pretty things, but they are so valuable when you take time to find them. That’s why acceptance is so important. Once I stopped focusing on the happy life I would have once I got better, and instead focused on how to be happy with the life I have now, I found much more success. And it takes work. I have to remind myself everyday of the things that I am lucky for, and most of the time it’s a no-brainer. It’s family. But it’s easy to forget. To slip up. To fall into the humdrum of life and feel like you’re not where you’re supposed to be. And maybe you’re not. But most of the time, life just requires us to be present where we are.  We already have everything we need, we just have to be aware of it. In The Untethered Soul, Singer wrote that “Life is surrounding you with people and situations that stimulate growth.”So before you judge your life and your hardships, try to acknowledge that this is what you need in order to become whole. In order to become who you are– the best possible version of yourself. It sucks sometimes. It’s hard. Don’t I know it. But if in the end it forced you to grow and become awesome and happy, well then, it’s worth it isn’t it? Maybe it isn’t such a sad story after all.

I’m learning I have to be careful about the story I tell myself. Because if it’s a happy one, that will be my life. But if it’s a sad one, that will be my life, too.

Health, Happiness, Stories.

It’s OK To Ask For Help. Help!

It has taken me a long time, a very long time, to admit what I am about to. It’s not a very big deal at all, but I’ve spent a long time fighting the very notion of it, and in the end it’s completely true; I am totally reliant on the help of other people right now. I need help. I can’t do life on my own. It’s been this way for a while and though many times I’ve picked myself up by my own bootstraps as they say, and I’ve done all I could to live a life that is mine and have a struggle that I conquered, it just isn’t the case. And why that would be so hard to admit or accept for me, I have no idea. It must be the ego in me. It doesn’t want to admit I need help, but the simple truth is, I do! A lot of it. It’s all so silly. Sometimes life is hard and sometimes you need help. It’s OK to ask for it. And if someone offers it to you, you should accept. The world is full of good people and many of them are happy to help someone out in need. We’re in this together people! Independence is important. Solitude is a gift. But there are 6 billion people on the planet and I don’t think we were put here to suffer alone. This is where and why love exists, and I am seeing now that I need to channel my old fire for autonomy into pure grace and gratitude that I have people who are willing to help me when I’m down. Even when sometimes I don’t deserve it. When I have nothing to offer back. When I resist it. They give it anyway, and I am incredibly lucky for that, for them. It’s really time for me to let go of the anger that I can’t do it on my own. (I think they call this surrender.) Little by little, I feel my pride give way to acceptance. It hurts. It’s hard. It doesn’t always present me in a very pretty light. But there is freedom in admitting you need others, and I’m getting there; slowly letting go of a life path I had in mind that didn’t work out the way I wanted it to. Well boo hoo. It happens. The universe had other plans and here I sit in California listening to coyote puppies howl outside and trying to understand grace. I know it won’t always be like this. Things don’t stay the same. And the truth is it doesn’t matter whose couch I’m on or which family member I’m bumming off of. The key to my happiness is just being where I am. I really need to let what was, go. Let what could have been, go. There is just this, just where I am now.

The model citizen in this whole experience is easy; It’s Monty. Two years ago he happily rode in the backseat with me after the day at the hospital–let me use him as a pillow on the hour drive home to my parents house. It was a gradual move-in, but Monty seemed like he knew we were there for the long haul and quickly embraced our new house. (He was right.) I remember waking up one morning to find my mom feeding him cantaloupe off of a fork and laughing. Marc took him to the prairies with him and they quickly became partners. When I was too weak to play he slept. When I was sad he would fart or do something equally meaningless but would somehow lighten the mood. When I decided to go to Colorado, he got on a plane with me and we went, and he didn’t lose his temper when we were delayed for 6 hours in the Houston airport. He played fetch with a rubber band and then he waited patiently. When I came to California he came too, swam everyday and had a really good time. When we moved into an apartment with my sister and brother-in-law with not a lot of space, he made himself at home. I’ve always wondered what Monty in a bad mood would be like. I’ve never seen it. Every day is literally the best day of his life. He wakes up so excited. Could I be like that? It seems worth it to try. I’ve never seen Monty stub his toe and then yell “mother fuckerrrr!!!!” like I did the other day. Or complain about the agenda or the situation or his crappy pebbly food. It’s like all he does is love and embrace everything. His energy is really good to be around and I don’t take it lightly. I know I’m a little obsessed with him and people say “It’s just a dog, Mary.” But what does that really mean? I’m just a human. Monty seems to have something figured out that I don’t and I don’t see the problem with learning from another species. Some things, they just get. Anyway, it’s fun having him along.

Model Citizen.

He is just another part of the “Help” I’m receiving. The best part about dog help is that you don’t really have to ask for it, they kind of just know. So whether it’s Monty keeping me company in bed, my sister carrying me up the stairs, my mom counseling me through dark stuff, or a million other ways in which I am being helped by other people, I am finally comfortable admitting that I need it and I need them, and that’s OK! We have a tendency to want to do it on our own, but I promise it will be easier when you don’t go at life alone. Especially through the rough times. Maybe one day I’ll be able to return the favors to my friends and family. Pay it back. Or forward. Technically I’m in debt to a few family members like a jillion dollars but one day I tell them, I’ll pay our bills and take us all to Hawaii. Or I’ll do the house chores for them when I’m on two feet again. Or I’ll just keep being the lifeless girl on the couch who tells jokes every now and then. At any rate, I’ll keep trying, and I’ll continue accepting the help from the troops who were called in.  As hard as things get, it’s nice to recognize that I’m not in it all alone. Dare I quote the Beatles “I get by with a little help from my friends?” Oopse, I just did. Well there you have it.

Health, Happiness, Help!

You Can Make Your Own Cheese?

Good morning world! Guess who’s up at 7 am?! I haven’t been up this early and actually felt alive in a long time. I woke up in pain but I wasn’t weak like I’ve been and the best part was this; I woke up just in time for the sunrise. It’s funny that such a phenomenal event like that happens every, single, day, and how seldom we actually see it. Or stop to watch it. My immobility in the last few weeks has left me observing the worlds tiny gifts that I didn’t used to see before. Like yesterday I watched a spider web glisten in the sun and was like whoa, that’s beautiful dude! Because my life has become so contained, I’ve been seeing the small things surrounding me, and suddenly they seem just as big as the things I used to strive for- independence, health, conquering the world. Those kinds of things. It reminded me of something Mark Nepo said in an interview that I wrote in my notebook. He was talking about finding “the special” in everyday life and how important that is to happiness. “Become easily pleased. Find what’s special in everything. Everything glows. There are more distractions and distortions now than ever. The challenge is how do we balance–how do we hold at bay all the voices that are forever crowding in, and hear the voice of own soul.” The answer, he said, lies in stillness, reflection, and “spiritual aerobics.” I liked hearing that. And I find the special little things often outside when I’m on a walk with Monty. A fallen birds nest or a bright red door or marshmallow clouds, a little kid with a suitcase or an old man with grocery bags. Whatever it is, it’s easy to miss. But I notice that when I’m quiet I am surrounded by extraordinary things. You don’t have to travel across the world to see incredible things. It’s more about a change in perception than location. We have a tendency to think happiness is “just over there,” beyond the next hurdle, over the fence. I keep hearing that happiness is something already within you and I see now, it’s just about accessing it, activating it. It’s gettin deep in here yall!

This week marked the beginning of a new project: GOOD NEWS IN PLAID! Woo woo. This project started pretty unorganized and is still coming together. But I have to say, I feel better after I report good news. I like hearing other people’s good news. And I enjoy avoiding politics, terrorism, disease, and murder. Who knew? In the beginning I was like why am I doing this? I don’t even feel like moving! But then I was like, wait, I have nothing else to do. I might as well report good news. And it’s something I can do from bed, or the floor, or the couch. So I’ve been recording myself (and Monty) everyday reporting a few pieces of positive news from my own life and other people’s. Yesterday, 32 people left comments reporting their good news on Facebook, so I recorded myself reading everyone’s little bits of good news..without reading through them first. Then I showed it to my sister and realized it was a 10 minute long video and one of the more awkward things you’ve ever seen in your life. So she recommended I edit it down to like 5 bits of good news instead which is probably a better idea. I try to disregard the ridiculous parts of the video where I look and sound like a moron–like when I ask “You can make your own cheese??” (You’ll see) My sister laughed for a good ten minutes at me for that one. But it’s just about positive energy and good news, so I’m sticking with it. It’s also really hard to find the music you want on YouTube, so this video ends super cheesy and the music sounds like something that would come at the end of that movie Precious or on a Cadillac commercial. But anyway, Keep the good news coming…I love hearing it and reporting it, and I think everyone agrees that the world could always use more good news. Below is segment 2 and 4. You can see all the videos at goodnewsinplaid.wordpress.com. I’ll continue to post 1 a day.

In other news, I started seeing two new doctors. One is a Chinese doctor who practices traditional Chinese medicine and is the most delightful man you’ve ever met in your life. Doctor Xu (pronounced Sue)It’s a whole different approach to health, but a lot of it makes sense to me. It seems to work with your body instead of just supplementing pills for symptomatic relief. And since this illness manifests itself in entire body system malfunctions, it feels like a good approach to take. After looking at my tongue and nails and asking a few questions he said “OK, I fix you. Two or three months. I fix you.” He makes his own chinese herbs and creates a tea out of them based on getting your body back in balance and “lighting your internal flame.” Haha. Whatever that means, I’m up for it. He also helped my sister out a lot when she was experiencing chronic migraines and often sick after college. So now he gets to try to heal her sister. His Chinese herb teas taste like what I imagine a bird’s nest ground up in a blender with some carrots thrown in would taste like. But if it means getting better, I’ll try anything. He also does acupuncture which I really like and cupping which feels awesome. But it leaves you looking like you’ve been attacked by a circle monster. See?

I know, it looks gross. 

The other doctor I am seeing is a Russian woman who practices naturpathic medicine. She believes that I didn’t get rid of the lyme disease on the first go-round and so I am still fighting that with “co-infections” and that’s most likely why I feel like I’m dying. :) Anyway, she has a plan, and Dr. Xu has a plan, and I’m trying it all. Open to anything. Maybe with a combination of Western, Eastern, and Russian Naturpathic medicine, I will get to feeling like a human being again. As my mom says, “All the kings horses and all the kings men will put Humptey Dumptey back together again.” It all sounds good to me.

Health, Happiness, Humpty Dumpty

Good News.

I never write on Sundays, but I have a little energy today and after a sick and cloudy week, I’m taking advantage of some mental clarity. The truth is I don’t have a lot of news physically. I have been the weakest I’ve been in my life. It’s a little nuts. It feels like trying to move through maple syrup. So life has been in slow motion, literally. But as always, I have help and constantly remind myself how lucky I am for it.

The real challenge with this latest crash has been maintaining emotional resilience. I remind myself of the same idea each time it gets overwhelming; this is only temporary. And when times are golden and everything is going perfectly, that will be only temporary too. The point is to find inner peace and joy that is resilient through circumstance. So just look at the bad times as intense training. Training isn’t forever. At some point you go out into the game and test your skills. And no doubt, the world will always provide you with situations in which to test yourself and what you’ve learned. This year has had a lot of training and a lot of tests, but a part me feels that I am only just beginning to understand any of it.

Since I have a lot of down time, not moving and all, I do a lot of weird things. Like look at nothing out of a window for a long period of time, not really knowing how long has passed when I snap back to present. Sometimes I listen to Debussey’s Claire de Lune over and over and over and just feel the aliveness of a song like that, even though I feel like only a half-alive body. I watch French movies on Fridays because verbally, it sounds nice. French Movie Fridays. Also I love French movies. I write down things in my notebook that I don’t immediately understand or know from where they come; sometimes I just feel like the person holding the pen, channeling something else altogether, something separate from me. Deepak Chopra would say there is no separate, there is no you and no me. Each person manifests the entire universe, all of the people, and the source itself, within themselves– thus separation is just a human illusion. This is why when you hurt someone else, you hurt yourself. This is the oneness found in “waking up.” This is how he explains the part of you that isn’t born and won’t die. It embodies it all, and it is eternal. So I guess some of the things I write down are being pulled from an all-access consciousness that has always existed. I don’t know. Maybe getting sick is what it would take for me to stop and pay attention, to finally write down dormant words, to know what it is to be alive. I just know sometimes I write things that are far more intelligent than I am and I don’t even feel right taking credit for them. Except the White Girls on Facebook post, that was me. :)

There’s a funny phenomena that happens when I’m sick: Once I start to feel better and recover, I can never remember how sick I was or how bad it felt. I can imagine it but I can’t feel it. It’s like my brain deletes the sense memory of it. I have read that this happens to women after childbirth, and I guess it’s an evolutionary survival mechanism. If women remembered how bad it hurt, they’d never have more babies! It’s like the worst hangover you’ve ever had. You swear you won’t do it again, but then the beer tastes so good and the buzz is so nice! I don’t know what the meaning is behind not being able to recall precisely the physical feelings, but being this weak and incapable feels pretty burned in my mind by now. I may not be able to access these feelings again once I’m better, but what I need to remember is that shit, life is fragile. One day you wake up and you’re too weak to walk and your mom and sister have to feed you. It’s not all pretty, but I know there is meaning in it. It’s easy to throw up your arms and scream WELL WOE IS ME,  life is unfair and none of this matters. And I’ve done that some days. The problem in doing this is that the very conclusion leaves your experience meaningless. The suffering is the hard part, but if you can hold on, if you learn to live anyway, then you’ve transcended the pain and evolved and it wasn’t for nothing; growth can never be bad. Following the pain always comes pleasure, even if it’s a simple change in perspective. Plenty of people have experienced far greater tragedies than me and come out on the other side– happy and wise. Like my mom for instance, who survived the death of two husbands, but didn’t succumb to darkness and managed to emerge happy and loving.

The goal in all of this for me is not just to stay positive and hopeful, but also to keep my perspective wide and my problems right-sized. This is just a moment in the context of eternity. It’s still really hard but it’s not forever and I’m not on my own. It’s easy to feel like the world is really big and you are really small and your little problems are terrible but that they don’t really matter. But they do, and you do. The way to make them matter most is to conquer them– with humility, grace, whatever you got. Everyone has their battles and each leads to their own lessons and outcomes, all necessary for the evolution of the world. But we all have to do our part. I don’t pretend to know how it all works, and I don’t think we’re meant to know the whole truth in this limited dimension we live in. That may explain why I had a dream last night that TRANSCENDED TIME AND SPACE and I have no idea how to put it into words. I probably sound like a kid during his first experience of dropping acid, but some things we just can’t fathom on earth. And that’s fine. We just need to do our best.

So I’m going to keep trying. Keep hanging on. Keep reading what the Greats have to say and try to make sense of it all. It’s been a challenge to stay optimistic and happy, but I know it’s necessary and I will work just as hard at that as getting better physically. In that light, I’ll introduce a new project that begins tomorrow. I’m going to report a few minutes of only good news every day for 30 days. I’ll begin with personal good news (like, I had enough energy to take a shower today!) then report national good news and then worldly good news. The idea is simple- I’m too young to be cynical. My situation is depressing enough and I don’t want to keep watching the news to see how crappy the world is and how bad people are. It’s important to stay informed on events, but I think it’s just as important to see the good things people are doing and the positive stories too. So that is the newest project and I will post the first video tomorrow around 6–that seems like a newsy time doesn’t it? I will always wear a plaid shirt because plaid makes me happy and I have a lot of them and we’re striving for good vibes here. To give you an idea of things I won’t be talking about, here is the backdrop to my very high tech news desk.

Watch the good news at goodnewsinplaid.wordpress.com.

**Addendum! I jumped the gun on my 6 o clock timeline. I’m a little behind. But the good news is now up at goodnewsinplaid@wordpress.com. If you have good news you’d like me to read on air, send it to goodnewsinplaid@gmail.com. It can be anything from your little league team won to you’ve been constipated for a week and maybe you finally had a bowel movement. If it’s good, it’s good.

Health, Happiness, Plaid.