Colorado, Crashed, Covid, Catastrophe

It’s hard to know where to start. 

I kept thinking things would get better. I would get better, then I’d write. I’d take a shower first. I’d wait until this migraine subsided. I’d pack a box. I’d unpack a box. And then and then and then. And now…

Now, things are worse than ever! So much has happened since I wrote here last. Now I’m sitting in our living room in Colorado, soaking my infected toe in an Epsom salt bath. I’m icing my head because I’m still stuck in the migraine cycle. I’ve only eaten an apple with peanut butter for dinner because my stomach ulcer went from mild to angry in the last month and I don’t want to upset it. I am weak, heavy, and ridiculously short of breath. We having fun yet?!

I knew the move would be tough. Moving is hard, regardless. Moving when you’re sick is really hard. Moving followed by a severe crash and a world-wide, viral pandemic? Well, that’s just good ol’ fashioned fun.

Remember when we all thought 2019 was such a crap year? HAHAHA.

Matt and I packed up my moms Hyundai in March and drove from Louisiana to Colorado with Monty in the backseat and lots of road trip food. We took three days getting here and it was a pretty fun voyage, except for that part when we almost died on Red Mountain Pass because it’s an insane pass. Four days after arriving, the world turned upside down. 

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That Red Arrow is the Part Where You DIE

 

But things are such a mess on top of that, I barely even think of the damn Covid! No, that’s a total lie. I worry like hell about it, it’s just that the list of worries is extremely long right now. 

For starters, I am a walking catastrophe, it’s almost hilarious. Except that it’s pitiful. In fact I’m more of a sedentary disaster, a truly rare breed of human catastrophe usually only found in the state of Florida. Kidding. You get the idea, I’m about as useful as a trashcan lit on fire right now. A waste of oxygen! And there’s already so little of it in Colorado, as my Uncle Tom says, ‘It just don’t be right.’ 

On top of that there’s a lot of stress and exhaustion in trying to find doctors who will continue treating me, (so far a disaster), praying my toe doesn’t fall off (another day, another story), praying Monty’s toe doesn’t fall off (another day) regaining some functionality (I Just. Want. To SHOWER.) and finding a way to adjust to all this change without blowing a gasket. The move. The covid. The lack of rain in Colorado (Boohoo) I’m trying hard to trust it will all work out. I know so many people are trying to do the same. It ain’t easy.

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Twinjuries

I wish I could remember the last time it was this bad, that way I might recall some pointers on how in the hell to get through it. You always forget how debilitating this thing can get. But I know the answer, even if I can’t feel it intuitively. One foot in front of the other. Such a simple idea, so hard to implement. It’s *litrally* all I’m capable of for now. So it has to be enough, even if it feels insanely insufficient.

Suvival Mode–that’s how a crash goes. Feeling guilty about what I’m not capable of is no help. Just survive the day. Or the moment. And keep moving forward.

Lately much of my life has been reduced to one breath at a time, especially because so often I feel like I can’t even take a full one. The mind tease has been that all the worries condense and implode on my psyche and it’s too much. Too heavy. Feels impossible. This all becomes elevated when you’re too weak to brush your damn teeth. Inevitably, I lose it.

So I have to slow my brain down. Do something to break up the hardened cement of reality in my brain. Sometimes I say some Hail Mary’s, just to interrupt the cycle of overwhelming thoughts. I remind myself, I don’t have to solve every problem in this moment. In fact, that’s not even possible. 

I lift my weary head, and make the next move. This is where having a dog is truly therapeutic. Just going outside and throwing a ball for Monty can help dry up my mind when it’s under water like that. Sometimes it’s just a few steps to the sink to wipe my face. Other times to a book, or sudoku, or funny videos of animals or people falling down. Yesterday it was yelling at Covidiots on Instagram. Real helpful for everyone! Or I reach out for help when I can’t do it on my own. And I’m lucky as anything I have help to reach for.

As I was doing this the other night, (trying to calm my spinning brain) (and crying) I saw Eckhart Tolle on my nightstand. I remembered he would say that’s all there is anyway—this one breath, this very moment. I was stuck, anxiety-ridden, about a future I feared but didn’t exist yet. I opened up to a bookmarked page that said this:

There is always only this one step, and you give it your fullest attention. This doesn’t mean you don’t know where you’re going, it just means this step is primary, the destination secondary. 

Admittedly, I have no idea where I’m going, or how I’ll get there. But I know the only accessible piece of life is right now; the only place we have any power. So maybe all of this is just a supersized lesson in expanding my consciousness! Just great. But sometimes I think I could go on less conscious and that would be fine too. God? That would be fine.

Keep moving Mary. That’s what I tell myself. Even in the depths of despair or discouragement, I try to remember that I’ve been through insanely hard times before (Basically the whole year of 2006 comes to mind) and I can do it again. I remember that others have endured way more than me and emerged. I have to believe that all of this will unfold into something larger, better, and something that makes sense.

Most of all, I try to reassure myself that no matter how painful or difficult things may become, they’re still possible somehow. Frequently solutions arise I couldn’t have planned on or thought of. That’s the beauty of having been through such painful times in the past. They don’t become easier, you just know, by some means, you’ll find a way through this one too.

I mean that or you die–either way. JK. Do I have to keep saying JK? Probably not. 

Just keep moving forward. Every night before bed, I hug my mom goodnight, then Monty and I clunk down the stairs to my room and I think Another day down, we made it. One more shit-show crossed off the calendar with a Red X. It’s very hard to stay “present” during a time when there are so many unknowns. I realize we’re all facing our own personal uncertainties, anxieties and issues right now, within this larger…catastrophe. Yet all we can take is one step at a time.  

For me the quarantine hasn’t been so rough, because I’ve been living what feels like a quarantined life for a long time now. I’m a pro! Being stuck at home is nothing new for me (or most chronically ill people) except now I’m in a different state, and I live in my parents basement and there’s a lot more hand-washing. I realize just how excessively pathetic that sounds, and that’s because it is. But it’s also kind of funny, I think.   

LIVE! From My Parents Basement! That’s a show I plan on ‘producing’ soon. Soon, soon…

Anyway, it’s taken too long to write this. And there’s still so much more to say and catch up on. Stories about the move and the ridiculous drive Matt and I made here and quarantining with my 90-year old grandma! All in due time. There’s plenty of it, and we’ll get there. 

Besides, I know who you’re most curious about anyway. And I can assure you, he seems to be adjusting just fine…

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Hang tough yall. We may all be in different kinds of hardship soup right now, but we are in it together. 

Health, Happiness, Humanity  

*P.S. I dedicate this to my mom, my hero, a little late for Mothers Day, who has seen me through some of my toughest moments and hardest days lately. (Weak gift, I realize) You are a rock, and I know we’ll make it through this the way we’ve made it through everything else– One shit show at a time. Thank you for making me shower. Thank you for everything. Love you a LOT.

We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

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“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

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A bit too wispy…
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A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

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Who. Dat!
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This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

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Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

Spanksgiving

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

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

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

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

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

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

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

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

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

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

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

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

Health, Happiness, Spank You

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/

Living Masters

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

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

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

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

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

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

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

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

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

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

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

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

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

Health, Happiness, Masters

One Month and the Buzz

So, I took a month off. I’ve missed you.

Health-wise I’ve been up and down, but more ups I think. I’ve been out of the house doing things; normal people things, 29-year-old things. Living like a normal person doesn’t always fair well on my body and a few times I pushed it too far and paid the price, but somehow it felt worth it. My soul needed to get out in the world and roll around in the dirt. I felt like Monty when he sees a squirrel and I unhook the leash–caution to the wind, full force ahead. Maybe 50%. I’m often battling this fear that if I’m sick for too long I’ll go to sleep one night and when I wake up thirty years will have gone by and I’ll have barely moved. It’s not always easy but I know it’s important for my soul and my psyche to get out there and try a little. So I do. I did. And I experienced these moments where I felt so intensely alive I could feel it buzzing in my fingertips. And that’s the stuff of life people! The best kind of little reminders.

A while ago I was invited by a friend to attend a three-day meditation retreat in Magnolia, Mississippi. I’d never been on a retreat before and I felt apprehensive at first. For starters, I felt angst about whether my body would hold up through the weekend. Secondly, I had this cliché vision of long-haired hippies dancing naked around a fire, sharing their “truths” or something. But when I learned it was a silent retreat, I knew I had to do it. I don’t know if I’ve made this apparent, but I sort of hate meeting people. I cringe at smalltalk and I find strangers questions difficult and exhausting to answer. I know it’s just part of conventional social norms, but this question of “What do you do?” causes me an intense five-second panic attack, and introductions almost always go there. To give an honest answer comes with this pressure to provide a back-story, which is long and convoluted. I expect strangers have as much interest in hearing these details as I do telling them, and sometimes I feel like rolling my eyes at my own reality. But I haven’t yet figured out a way to give a succinct honest answer that leaves everybody comfortable. I think I’ll start answering ‘waitress’ and save everyone five whole minutes.

So this the idea that we wouldn’t have to talk to other people, including our assigned roommates, totally sold me. But I still felt angst about my health hovering in the background. This is nothing new. I confront this fear all the time making decisions because my health has failed me so many times before when I’ve really counted on it. So I don’t anymore. It’s hard always having to maneuver around this invisible thing in your life that you don’t even like. But this is my reality and hating or fearing it does me no good. So I considered the worse-case scenario; I crash. Even if that were the case and I spent the weekend in bed, what were they going to do? Strap me to a chair and force me to meditate? I figured I’d be OK. So I said yes. And there’s something pretty revitalizing about saying yes to something new, especially when for so long these kinds of opportunities were an automatic no.

I wrote an essay about the weekend and I’ll post that next. I’ll say now my favorite part was eating lunch next to my friend in total silence, only making eye contact every now and then. There’s a lot of space and freedom that opens up when no one feels the need to talk. They call it “noble silence” and I think we could all use a little more of it. It rocked!

After that I was invited on a weekend trip to the beach where I would share a house with 12 other girls. So basically the opposite of the silent retreat. I am a total beach bum and don’t feel I get enough of it, so I went. And it turned out to be a really awesome and fun weekend. I was feeling pretty sick the day we left, but I was also really craving the sand and the air and warm gulf water. (I’m a pansy about water temp) I knew I’d feel better once I got there, so Emily and I drove the three and half hours there and watched the sun set while crossing the Louisiana/Mississippi border. I felt really happy in that moment. The sunset was the kind that changed colors every 10 seconds and was remarkably beautiful over the Louisiana marsh. I tried to capture the spectacle made by all the intense colors, but a picture never does a great sunset justice. It’s like holding a rookie drawing next to a Monet. Maybe it’s better to just pause and enjoy the splendor of a disappearing sun. It’s such a short-lived pleasure anyway. Watching them always make me feel grateful.  We finally arrived and learned that our house was next door to the classiest bar in the South: Florabama. So naturally, we went. Never heard of it? Here’s a peek.

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No Pets
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Every time I visit this bar I am overwhelmed and baffled by it. It’s three stories (possibly more, I don’t know, I’ve gotten lost in it twice), hosts multiple bands on different levels, and is jam-packed with drunk people of every age. Every surface is a proverbial guest book where people under the influence leave their mark for the world to see. I’m always riveted and only sometimes horrified reading the graffiti that adorns literally every surface. I started photographing the funny ones so I could laugh later and have some weird photographic keepsake of the trip. So I took a photo of the surface of the bar we were ordering from.

Damn you, Laken
Damn you, Laken

We couldn’t stop laughing at the idea of some angry person pulling out a marker and deciding to write that Laken Franks sucks Donkey Penis. A while later I entered the Florabama bathroom, where I confronted many, so many more messages, in every color, on every surface, including the toilet seat. I took some more photos because so far no one I met was as interesting as this graffiti of the world. I liked the idea of one picture having the mark of so many strangers, many of whom likely have no memory of the literary gems they left. And now I’d have a piece of it and they’d have no idea about that, either. So what did I find while looking through those photos later? Another sentiment for Laken in the bathroom stall.

Damn you again Laken
Damn you again Laken

Only this time Laken’s a baby murdering whore. I couldn’t believe the name showed up in two photos. Pretty crazy odds given the volume of surface area in that place and the amount of angry messages. I wonder who Laken Franks is and what she (he?) did that left someone upset enough to get creative with their insults and tattoo them on two of the walls of the worlds classiest bar. I shall never know. I’m just glad I was alive enough to be there and capture it. My fingertips were buzzing at little moments like this all weekend. But mostly when I watched the sun rise on the beach at 6 am. There’s something almost holy about a sunrise. It feels like a sneak-peek at reality unfolding–a backstage pass to the universe or something. Anyway, I’ll leave you with that photo, because I was feeling very alive when I took it, and my fingertips still buzz when I look it now. Maybe yours will too.

6 am, alive and well
6 am, alive and well

Health, Happiness, Buzzing

The Opposite of Boredom

A few noteworthy things of late.

I’m completely lost in Walker Percy’s The Moviegoer. I began reading it Sunday and now I find myself attempting to read only small bits at a time because I’m already dreading it being over. It’s such a good read. The protagonist Jack really resonates with me but also Percy is such a creative and dead-on writer of things large and small. I admit reading his words make me feel like I could never write anything of worth if I tried for it my entire life. But on other pages his complex ideas play out so simply, his writing so accessible that it gives the assuring impression that anyone could do it. The story takes place in New Orleans mostly, among other Louisiana Parishes and the Mississippi coast. I love stories set here, not for reasons of pride but for how perfectly the landscape plays into the story, picking up where plot leaves off. Something huge would inevitably be lost were it to be told from Ohio…or Michigan. All parts of it from the dress, to the houses, to the unnerving racial tension are all intrinsically Southern, and you find yourself loving it whether you hate it or not. Also of note, Percy lived in Covington. He used to drive the bridge to New Orleans. I guess it’s encouraging to know something so inspiring came out of this little town that for so long I hated. Speaking of the bridge..

I had another moment of coherence. This time around mile marker 11. Monty and I were driving home once again, New Orleans to the Northshore, last Monday evening. It was a pretty nondescript Monday, cloudless with little traffic. But my thoughts were floating through me with the rhythm of the bumps per usual. Then I did this thing which I do a lot. A small amount of congested traffic formed from some kind of road repair, and as I slowed my car to a near-halt, I felt myself bracing for impact. Not from me but from a car behind. (No car in particular, I do this no matter who’s behind me) Then I imagined the loud crashing sound it would make and my airbags inflating. Then the last part which is usually the most unnerving for me, I saw my car crashing through the concrete barrier to my right,  and my feeble Toyota corolla with Monty and me inside it, falling slow motion into the water. Down, down we’d go.

like this. but less black and whiteness.
Like this. But less black and whiteness.

And usually the thought doesn’t end with a rescue. Usually it ends with me shuttering at the idea of the lights going out on my life so fast, and then me being jerked back to reality, convincing myself someway that death is nothing to think about. As though I’ll never die! But last Monday was different. I had the thought, I braced for impact, I saw the vision of my falling car. And then out of nowhere…tranquility. My mind felt placid. I may have even smiled. I thought how weightless that moment must be when you finally let go. The grand transition. Finally releasing something you’ve held so tightly onto, whether it was good to you or not. The surrender. The relief! It finally occurred to me that only being lost so deeply in the world garners that sort of fear about death. If we could interview those who have “passed on” (as I hear older religious folk say) I think they’d say it wasn’t that scary. Nothing compared to the rest of their life on earth scared to death imagining it! I’d love to get just one interview. It’s like I know all these dead people and none of them will give me the dirt.

Anyway, I can’t explain how reassuring that moment was on the bridge. I remember in California over a year ago, I was sicker than I’d ever been to the point I actually thought I might be dying. And I hated the idea. I was so overwhelmed by that possibility that often it brought me to tears and I’d have to excuse myself and physically catch my breath. In theory it should have been almost a relief to think about–an end to suffering. But I didn’t want to die. And I certainly didn’t want my last days on earth to be like the ones I was having there. Closed up indoors, lifeless, feeling very alone. It’s just interesting to me that now that I’ve really been living these last few months, and dare I say it, even–happy–my fear of death has lessened. I’ve enjoyed the park and the pool with Monty in the sun. I’ve gone to dinner parties. I’ve said yes to things that in my sick past were a big fat no. I’ve spent quality time with people I love, not doing a whole lot of anything at all but talking about life and people and laughing really, really hard. And there on the bridge, for maybe no more than a second, I didn’t fear death. I felt curious and interested. But I wasn’t tense bracing for impact. I was smiling at how much fun I’ve been having and how at ease with life I feel. You’d think that would make the idea of death more unnerving than ever, because it means an end to happy times. But the opposite occurred. From my perspective over the water, death was just another thing that happens. Maybe after all, it’s not that big a deal? Hah. That moment was the first I’ve had that it didn’t feel like this overwhelming weight baring that comes with the knowledge that one day we’re all going to die. And even though my normal angst about it has at least half returned, that moment has really stuck and it feels readily accessible still. There was something very casual about it, which made me trust it even more. Sometimes I find myself looking for grand answers, spectacles, formal explanations of life and existence..and this was not really that. It was a simple and tranquil instant of acceptance, and those are the moments that persist. I pet Monty’s velvet ears, turned up the music and into the distance we drove. That indistinct Monday turned out to be quite the evening as it were.

Besides my newfound excitement for death! (jk)… the Day Lily’s are back in bloom. I looked at all the colors sprouting up yesterday, noting that by nature’s calendar I’ve officially been in this house for one year. I remember writing about these flowers last year, excited for how life in the pool house might unfold. Funny I hardly remember what’s happened in the time since then. In some way the fact that nothing terrible stands out makes it safe to say it’s been a pretty decent year. I only know that being given the gift of “relative health” the last few months has truly been remarkable for me. I’ve been enjoying the hell out of so many moments– of friends and boys and late nights immensely–and I feel gratefulness overflowing in me. I don’t remember the last time I was bored. I’ve read and written and played Taylor Swift on my guitar ridiculously loud. When I’m sick I rest. When I have energy I go. But most notably is this gratitude and the awareness of this gratitude. It occurred to me recently that this is the opposite of boredom. When I feel gratitude I feel like I’m living with my eyes open. I’m often noticing things that were already there that I’d simply skipped over before. I like this feeling of being in touch with my aliveness, seeing the realm of possibility beyond personal limits, recognizing the awe-inspiring nature of everything alive. Maybe it’s why I love saving the frogs from the pool, or why I don’t get rid of the spider living in the corner of my bathroom. I don’t think you can be in tune to these truths and be also bored. Boredom uses a narrow vision, it sees life as something to happen for us and not from us. Even yesterday, which turned out to be a crash day spent in bed, I lost myself in the enjoyment of a book, completely grateful for the existence of novels and good authors. Then completely grateful for a nice house to read them in. I never got out of my pajamas or brushed my teeth. I didn’t exactly contribute to the world. And all the same, it was really a wonderful day. I know there was a recent time in my life when I wouldn’t have thought that to be so.

Health, Happiness, Opposites.

 

 

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!

The Plague.

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

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

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

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

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

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

“Indecisive Girl” by Carli Ihde

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

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

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

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

Here’s something Tolle says: If you resist what happens, you are at the mercy of what happens, and the world will determine your happiness and unhappiness. …To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally as good or bad, but to let it be.

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

Health, Happiness, Plagues.

Artwork: Indecisive Girl from Carli Ihde

I Wanna Get Better

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

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

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

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

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

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

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

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

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

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

Health and Happiness and Sickness and Sadness :)

My Best Friends Wedding

It is a grey, rainy morning in New Orleans. It looks like it’s recovering from my weekend. I am staying at a friend’s house Uptown and have taken up residence in their sunroom for a couple of days. Like many Uptown homes here, the sunroom is filled wall-to-wall with windows– perfect little glimpses of the diverse lives of old and young people going about their days. It isn’t as action packed as say a window room looking down on the streets of New York City. It’s quieter, more stationary. But just as perfect as it gets to lay and read or write or think about things both heavy and light. I love days like this, in rooms like these. It’s a perfect do-nothing day. And I know what you’re thinking, aren’t most days of your sick, sedentary, jobless life do-nothing days? And yes, many are. Incidentally, do nothing days make for the best writing days. As though both were designed specifically for the other.

I’m surrounded by three animals; a black cat named Elvis that if I’m being honest strikes me more as a Stanley or a Todd. A domesticated wolfdog named Jax, and Monty of course. The cat has stayed near me all morning, and Monty is curious about the cat and Jax is curious about Monty, so we’re an entourage in every room I go including the bathroom. Undoubtedly the sporadic rumblings of thunder worry the dogs and they shuffle nervously when it comes, then drift back to their dog naps. The cat doesn’t move at all. This is the kind of weather I love and New Orleans I love. Maybe it’s that it reinforces the idea that it’s OK to stay inside all day. Doesn’t make you feel bad about never putting real pants on. And I always like things that slow us down. Life is fast. People move so quickly. I often feel like I can’t keep up and I’ll never have the energy to. Today is my pace and I am soaking it in.

I like staying at friends houses and perusing their bookshelves. I’m ever on the hunt for my next good read and right now I can’t decide between two: Merrick by Anne Rice–a New Orleans author I’ve been recommended for years now or In Cold Blood by Truman Capote. I saw the movie which I did love but the book is always something different altogether and so I’ve been going back and forth between both all morning. Dare I try reading two at once. Isn’t there some rule against it? I’ve never done it before but life is crazy and maybe I’ll do something super daring and go for two at once! Woah!

My life-long best friend Kaitlin (aka Matt Damon) was married this weekend and I was the maid-of-honor. Turns out that’s a helluva job! The official festivities started Thursday evening and I had to pace myself to ensure I’d survive until Saturday night, and store some energy for dancing late. With a lot of protein, drinking a lot of electrolytes, and the help of my respective 25 pills, I survived. Not only that, I had a blast. It was a beautiful wedding, and the reception had the three necessary components for a success: Open Bar, Amazing band, Awesome people. I must say dancing to “I’m Sexy and I Know It” with my parents, the brides parents, and the entire entourage was one of my favorite parts. It was a long day. The ceremony didn’t begin until 7 but hair and makeup people showed up at 9 am. Men will never know what we go through or how long it actually takes for women to prepare for events. Well maybe they do know, but they’ll probably never understand. At times it became stressful or overwhelming because it’s just such a huge day in so many ways and a strict schedule a million little logistical things to work out. Also doing anything in large groups is quite literally like herding cattle but harder. And it required some stealthy maneuvering taking photos at the hotel beforehand so that the groom wouldn’t run into the bride before seeing her walk down the aisle at Church. Things went quickly and the two hours before the ceremony became a little stressful just due to the number of things to do and timing and zippers that wouldn’t zip yada yada yada. (Not to mention that sad little Saints game we glanced between things)

One of my favorite moments of the night was when Kaitlin, her dad, and I snuck away and took five minutes to relax in the hotel suite before leaving for the ceremony. I forced food on Kaitlin because I’ve seen enough brides faint and I was not about to let that happen. We also watched a few minutes of the very unfortunate Saints game. Mostly we all just sort of caught our breath–Took in everything with some ease and some calm. There’s not a lot of calm on the day. I remember thinking I’d want to remember these five minutes we got to share. I knew it’d be the last of the night, not to mention, our last few moments with Kaitlin Pastorek the girl and not Kaitlin Pastorek Gambino the woman, the wife!

Bridal Selfie!
Bridal Selfie!

To me we are still kids playing mermaids in the pool. But in writing my speech the night before, I had to acknowledge that we were in fact growing up. And that doesn’t have to be sad. I love that our friendship has lasted and grown. I guess that’s a beautiful part of having a best friend–life is constant change, but together things feel solid, impervious to time. Maybe when we’re 80 I’ll still feel like we’re girls in our twenties jumping on the bed in our bath robes. Speaking of which..this was us in the hotel suite the night before the wedding.

See? Kids. But alas, kids get married too. And maybe just because people start referring to you as an adult and you start partaking in adult activities doesn’t mean you necessarily feel like one. Maybe that’s what everyone’s doing and just not talking about–playing the part, going through the motions. Or maybe some people actually feel like adults and I’m just really struggling to grow up here. Who knows. Life is funny. Weddings are fun. Best friends weddings are really fun. And as I’ve always said, New Orleans weddings are the best.

Health, Happiness, and Supposed Adulthood

Even When It’s Bad It’s Good

The Holidays rock. They just do. I feel worlds away when I talk to someone who doesn’t like Christmas. Or Christmas music. Or trees. Or gift-giving. Or ELF. (On repeat!)

Is it excessive? Sometimes. I can admit that. And has Christmas in our country become overly commercialized and sensationalized with the meaning lost in mall crowds, and could we have a long discussion about that over the dinner table? Yeah, we could. But I don’t like going there. I’ve never engaged in the War On Christmas propaganda that inevitably resurfaces each year. And it’s not in the name of denial, but because every year, for a small fleeting time, regardless of my health or where I am personally, the Holidays are a small but hopeful light at the end of a year–where I see more good in the world than bad. Often it’s a reason to become softer, reflective, and thankful. Or do something kind you wouldn’t normally do. If for no other reason than “Well, since it’s Christmas.” I love hearing those words. And I love the simple reasoning behind them.

For my immediate family, Christmas is always the time we give to ourselves to be a family. There are four kids in four states. There are grand-children and extended family and friends who might as well be. But I like that it’s been our staple. Usually it’s not a question of who will be attending Gelpi Christmas but where we’ll be making the noise. And we do, make a hell of a lot of noise. When it’s not me making it, I sometimes plug my ears. :) Life is busy. The work for all of us is different but tiring in its own way. It’s easy to get distracted and let time go by without realizing how many months have passed since we’ve had any genuine interaction. It’s easy for face time to turn into FaceTime and phone calls into text messages and those to turn into Facebook and Facebook to turn into emojis. I mean really, instead of writing this blog post I basically could have just put…photo-7

But emojis can’t replace real emotion in writing, just like emails aren’t as personal as phone calls and text messages will never compare to feeling the weight of a hug from someone you love. Admittedly, as the technology advances, it does help increase the amount of contact time between all of us.  And thank God for it, because as secluded as my life sometimes gets, sometimes my iphone feels like my only window into the outside world. Technically I met my youngest niece Harlow over FaceTime and spent some virtual “feedings” with her. And I’m extremely impressed and grateful by what can be accomplished over a 2 x3 screen on my phone. It truly is, extraordinary. But still, holding her for the first time beat out those “virtual hangouts” by a long shot. Nothing like the smell of an infant, or getting her to smile.  Or watching my niece Olive dance in circles to music or watching my parents enjoy grandchildren or playing cards with my grandma or my siblings annoy the hell out of each other. In a good way, of course! This year my 87-year-old grandma surprised us and came to California for A Very Gelpi Christmas. Show an old woman the capabilities of the iphone and try not to marvel at how far we’ve come and what we’re capable of. It’s a new world, and it’s changing all the time.

Every year at Christmas I always reflect on the previous Christmas. Where was I at this time last year? What has changed? Are things better or worse? And where can I do better? That’s the novelty of an upcoming new year. As they say, It’s never too late to live the life you want to live, and I am always striving to live better. To be a better me. Last year at this time, I was struggling immensely in my health. I had improved from the bed-ridden state but was still feeling awful day-to-day. It was a struggle not to be permanently supine. I found socializing exhausting and far from any fun. It was not one of my better Christmases, but I still enjoyed the tradition of it all, like always. Right after Christmas I relapsed again. I was stuck in Colorado, in and out of bed and freezing my ass off in their record Winter. I remember thinking in my darkest hours and sleepless nights, when the weight and relentlessness of my situation felt too heavy to bare, that this, like all things, would end. One way or another. It was a matter of physics. Time is one of the constants of the world, and it would keep going and eventually things would change. Winter would turn to Spring and at some point I’d lift my head with ease. I wouldn’t be bedridden in Colorado for the rest of my life, even if it felt like it. I remember reciting Winston Churchill’s quote: “If you’re going through hell, keep going.” That’s what I did, and at last, the physics of the world did what it always does. Winter passed. I was given the opportunity to live in a happy house with a lot of windows; just Monty and me. And my health very slowly improved from what it was. And I have truly never felt luckier or more grateful to be where I am. Things aren’t perfect. I’ve still a ways to go. And it’s never far away in my mind that this illness can hibernate and reemerge as if on its own agenda. Sometimes for no reason I can think of. But for now, I’m so improved from this time last year. And it feels good to know, that the reassurance I felt at night but could not see was real. The hardship wasn’t forever–the sun came out and I survived. It’s easy to be disillusioned and overwhelmed by our thoughts in hard times. But how important it’s been for me to remember, to everything, there is a season.

And for me, the best will always be this time of year.

Happy Holidays Yall. Hope it was a good one.

Health and Happiness and photo-7

The Allure of Alone

I’ll admit, I’ve spent a certain amount of time, perhaps too much, fantasizing about the life I’ll have once I settle down with someone. How nice it will be to call a man my husband. To introduce my “better half” at parties, to have a “plus 1” at weddings and someone to sit around and do nothing with. I’ve even set aside a certain amount of happiness as something that will come once I am married, once I’m with my “soul mate.” Whenever I feel very alone or uneasy, I convince myself that those feelings won’t come once I’m with my Mr. Right. I think now though, having a very large amount of alone time- some of it lonely, but more of it not– I realize that the certain loneliness/angst/unease is something I have felt even when in loving relationships. It’s finally occurring to me that just because you’re in love or committed to life with someone, doesn’t mean all the intimate problems of being human go away. I admit there is at least a small amount of fantasy in my thoughts about what my life will be like once I’m given away and married. Instead now, I am learning to really treasure my solitude. Just like anything else, it won’t last.

I was speaking with a friend recently and we were calculating how much of our lives are spent with another person. Which is wonderful for the most part. Science tells us that those married and with families usually live longer and are often happier than those who are alone. But at the end of our lives, it’s often a very window that we actually have just to ourselves. For most people, the first 18 years are under the rule of parents or parental figures. College years are usually spent living with roommates. In the past most young adults were married or on their way to married by the time college was over. More and more however, it’s becoming common to have a new amount of time in our mid to late twenties where it’s just us. We’ve entered the professional world, but not taken on the role of husband or wife yet. Maybe enough of us saw how detrimental marrying too young could be. Or we witnessed the pain and exhaustion of divorce. We’ve seen or were the products of marriages that didn’t look happy and fun– instead they looked like a lot of work and not much else. Increasingly, I see young adults holding off on rushing down the aisle, which I think is a good sign. Till death do you part is a pretty big line regardless of your faith, age, or morals. Probably now more than ever is a young demographic of people living on their own. It certainly can be lonely at times, but I’ve begun to cherish this time where it’s “me” and not “we.”

It seemed my grand-parents and parents generation married relatively young. (My mom was married with two of her four kids by my age, and my grandmother had 4 of her 6 by now) I couldn’t help comparing my age and progress to theirs for most of my mid to late 20’s– but I’m making a conscious effort to stop doing that. And I’m also beginning to see the value in a young adult life that is spent without a husband or partner. I also realize that finding and being with your “soul mate” or partner doesn’t mean an end to loneliness or angst all together. In fact, in many of my loneliest moments, I’ve actually been in a relationship, but felt completely unseen or misunderstood. One might say that being in a relationship that you want out of is one of the worst versions of angst there is. This is why it’s silly to put all my ‘happiness eggs’ in one marriage basket. A ring and a contract doesn’t equal an end-all to personal struggle, challenges or pain.

I have to remind myself there is no timeline. Some women and men find lasting love at 18. Some at 38. All it takes is a few minutes on Facebook to see that many girls my age have married already and started families of their own. I used to look on with some amount of jealousy– some feeling to rush this chapter of my life so I could start the married one. But I also know you can’t really force falling in love. Or meeting your dream person. I have been in love a few times and met really wonderful people. But I’m not married yet because it hasn’t been right yet. Some say it’s a matter of timing. Some say it’s fate. Some say you’ll meet Mr. or Mrs. Right as soon as you stop looking. (I can testify that it is often when I’m happy and fulfilled on my own that I end up meeting someone who adds significance to my life that I didn’t know I wanted or needed.) At any rate, the goal should always be to find happiness, wholeness, and fulfillment on your own. Putting off your total happiness until someone you’ve deemed the answer to your prayers, i.e. someone you haven’t even met yet, is not only reckless but dangerous. Someone else won’t be able to fill you up if you haven’t learned to do so on your own. I think the healthiest and most romantic of love comes from two people who don’t desperately need each other, but just genuinely love and like each other so much they just want the other around–forever. I know too that knowing yourself well is a huge prerequisite in finding someone to love well. We can’t expect other people to fill up holes within us. When you get down to business, that is up to us.

Looking back at relationships in my life, and also looking at recent time spent alone, I see that sometimes I lose myself in love. I don’t write as much. I don’t seek creative outlets as much. I fall into comfortable habits instead of seeking newness. To specify, there’s nothing wrong with that. I can’t wait until my Saturday nights are spent with my husband in bed, asleep by 11:00 pm. But I also have begun to see the advantage in being alone. I’m more productive in the arts, which is an important realm of my life. For instance, I’ve spent the last few days drawing and making water colors. (Also listening to jazz–my brother Nick’s suggestion) I know that were I in a relationship right now, I wouldn’t have done these. Not that they’re great pieces of art, not that I can’t do them when I’m with someone, but for whatever reason I usually don’t. And I like just allowing my soul to let out whatever it needs to without the interruption or expectations that come when in a relationship.

"headache"
“headache”
"politics"
“politics”
"birds"
“birds”
"dick cheney"
“dick cheney”

Besides setting apart time for art, I spend more time with my parents. I read more. I don’t have to compromise on TV shows I want to watch. (Watching Say Yes to the Dress as speak) I see my brothers and sisters and nieces more often. There’s no argument about where I’m spending Christmas. For the most part, I spend time how I want with who I want and there is a freedom and casual thrill in that. Ultimately, I think human beings are meant to find our counterparts, and still I look forward to meeting my person. Life feels incredible when you find someone who shares your intimate perspective. No one can argue with the pure and ridiculous happiness and high that comes with falling in love. But on the other hand, it’s important to examine the time you have with yourself and you alone. I think of the time I spend daydreaming about marriage and babies and family life. Maybe I’ll always do that. But the other day I had this image: me, married, a house noisy with children, reminiscing about that time I lived in my parents pool house, the days mine to spend how I wanted with my dog Monty. Staying up late, sleeping in, writing, reading, drawing, and creating. I remind myself to be grateful for this time in my young adult life; alone but not really lonely, preparing for what’s next, whatever that might be, whoever it might be with. Time to treasure what I have now– a whole lot of me and Monty time. :)

Health, Happiness, Solitude

Prepare Yourself, This Might Get Sappy.

There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.

I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.

I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.

Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless.  So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.

As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!

So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.

momo
Monty was very excited to take this photo.

Health, Happiness, Merci.

*P.S. On September 26th, this blog turned two years old. Yaaay.