Time To Kill

A little while ago, I was swinging on our porch swing while Monty did acrobatics with a stick and ran laps in the yard. I had been down for some time, but I couldn’t place exactly the source of the sadness. All I knew was that I could feel something missing and the result was not a loneliness but a “looked over” kind of feeling. It’s not uncommon for me to feel lost and uncertain about the direction and usefulness of my life, especially when I’m in a crash period. This feeling felt like it had roots in that. As I let my thoughts wander and my mind clear, these words entered my head and seemed to quiet the residual buzz: “I just want to make myself proud again.” It didn’t repeat itself like an incessant thought, rather the words just stood still in bold print, front and center in my mind. And then all at once I knew what that void I’d been feeling was. It wasn’t just a lack of pride, but the lack of pride and purpose that usually comes from working. Uselessness is a terrible feeling, and I know it arises sometimes from the fact that I don’t have a real job anymore. I haven’t in some time. And yet through this whole ordeal, that loss continues to cuts deep. It has me constantly wondering what I’m doing here and where I’m going and how I’m ever going to get there. As a working girl my path felt so clear-cut. I catch myself daydreaming of my desk and my business cards and the “importance” they implied.  But once the crutch of a job was gone, everything inside me felt upside down. Who am I if I don’t “do” anything?

Sitting in my bosses office and having to admit with a quivering voice that I “just physically couldn’t do it anymore” was one of the hardest moments of my life. My whole goal up until then besides getting better, was to find a way to hold onto that job. I knew if I was forced to leave it, it meant everything was irreversibly real. It meant despite what I planned or wanted, the illness was making decisions that I couldn’t change. It meant the scales had tipped and I was no longer in control. (Maybe I never actually was, but the illusion felt good) But now here I had come face to face with the truth that clinging onto the job was only causing me more suffering, besides largely effecting the quality of my work. Were I smarter I would have given in earlier and dedicated myself more seriously to getting well. But I was in a sort of denial up till then. I kept expecting to get better. I didn’t want to believe that this was truly going to be the new state my body. No one really wants to accept something like that, I think out of an inborn fear that doing so means you’re giving into something crappy and letting it take over–That you’re giving up on the possibility of getting well. But it was more just coming to terms with a reality and giving my health the attention it needed. Everyone around me seemed to know the time had come and were just waiting on me to call it, so I finally did.

I can remember solidly a few things from that conversation. I can still see his big sappy eyes as Andrew listened to me speak, and the honest calmness in his voice when he said  “It’s been hard to watch. I just can’t understand why this would happen to you.” I tried very hard not to cry but the tears fell anyway, much like they are now just remembering the whole interaction. We hugged goodbye and I tried to compose myself. I remember, I think in an attempt to lighten the sadness of that goodbye, him saying to please stay in touch and to come back and visit often. I said I would, knowing I probably wouldn’t. Knowing that life at the gallery would go on without me, while my own life was drifting into scary, uncharted waters. I punched out for the last time and felt totally numb. The French Quarter had just turned dark, freezing and damp, but I didn’t feel the cold at all. I paid the nice parking attendant with whom I normally joked around without even looking him in the eye. He made some comment about cheering up or smiling but I couldn’t bring myself to respond. I moved on autopilot like a robot. Once in the car all the terrible questions made their rounds. What would become of my life now? Who would I be now, sick and unemployed? What if I never get better? I tried to drown them out but the noise of the radio bothered me. That 40 minute drive home over the bridge felt like a dream. Once home, Monty ran up to me and my mom was sitting in her chair in the living room. Our eyes met and I lost it. “Well, I guess I don’t have a job anymore.” And that, as they say, was that.

Even though I fought it, leaving work was the right thing to do and in my condition, was just a matter of when and not if.  In the beginning it was a relief– not to have to fake well, to call in sick, to let down coworkers, and to constantly apologize. But not so long after, I began to feel this noticeable hole, like the gap your tongue slides through after you’ve lost a tooth. I had all this new time to kill but couldn’t spend it how I’d like. The adjustment was extremely difficult. Besides giving me purpose and pride, my job had contributed to my identity and livelihood. There was a little space carved out in the world called Mary, and I was useful there; I fit. I did what was expected of me and was paid every two weeks. But now I no longer occupied that space and I couldn’t make sense of what place I held in the world. Without the distraction of work, I also had to learn to just “be” and accept these new circumstances, which was also hard. When you’re sick like that you can’t just leave and go for a drive, or go get drinks with friends to feel better about it. It makes you confront your life head on since there aren’t the typical escapes. I had to begin accepting my experience and not thinking of my days sick in bed as total wastes. I’m still learning to do this, but it is possible. It began with adjusting the expectations I held for myself, and redefining what my definitions of “work” and “purpose” really meant. For so long work was something you did 40 hours a week and got paid for. And our culture nearly defines who we are by what we do. I no longer had a satisfying answer to that question. “Uh, Unpaid blogger I guess?” It took adapting to where I was at that point and not in the past. I was always going to feel shitty comparing my life sick to someone’s who was well. I had to get real about my truth. Still, those adjustments were hard and I am still learning them.

Life with illness means a lot of time on your hands and a lot of solitude. You have to learn how to be still, which I’ve learned very few people know how to do. You’re away from the typical distractions and noise and chaos often, so there is a lot of “being” and not “doing.” It also means getting to know yourself really well. Luckily, I like myself. We seem to get along. But all of this new vast time without a lot of outside expectation took a long time to really understand and warm up to at all. I had to remind myself that being sick is a part of me but not who I am. That took time too. As time went on I would grow more worried that I hadn’t re-entered the workforce. Or I’d feel these waves of inadequacy like I did recently. But sometimes I wonder if it isn’t the purpose of my soul that’s getting carried out because I have a body that doesn’t allow me to be busy and caught up in the regular tasks of life.

This experience has taught me big things and continues to now. It continues to teach me to let go of things, to be still and not be restless, to be OK being alone, and to accept myself as worthy even if I’m not doing anything impressive or achieving BIG things. Most of these were learned because my body wouldn’t let me achieve all I wanted to, and the lesson in humility has actually made me happier in some ways. All of it has made me come to terms with things that I truly find important, things outside of a job where the ultimate goal was money. If I look at this time away from work another way, it feels more like a gift. It’s allowed me to find and develop my voice for writing, which was my passion all along. It’s let me explore many other parts of myself that were not a part of my life when working. Even small things like learning to play my dads guitar and spending more time with my family that I wouldn’t have otherwise. It’s forced me to find the same joy and fulfillment from the small things that I used to require in the bigger or louder stuff. Today it was just being outside in the sun with monty and appreciating the moment.

I think it’s easy to look back on my life with a “real job” through rose-colored glasses.  I was “bringing home the bacon”and dressing in nice clothes and looked and sounded like someone who had it together. But I can still remember sitting at my desk sometimes and thinking is this it? This is what I do the next 60 years and then I retire? I’d be naive to say things were perfect and always made sense then, too. They didn’t. But it looked better on paper and gave me stuff to talk about when people asked what I was up to. Those conversations are funny now ;)  I was still wondering about my purpose and the meaning of things then too. I was still asking those same questions. The only difference is, I don’t have the disguise anymore. I am clearly not headed in any predictable direction and I truly don’t know what the plan for my life is. But, at least I’ve got some time to figure it out. All kinds of time.

Still I wonder, were I to be better tomorrow, totally healed and ready to emerge back into the quick-paced world, is that what I would do? Go back to work at some job, have office birthday parties again and two-week vacations, and then all my problems would end? I doubt it. What I mean is, I don’t think that’s what this experience is about. There is something more to it than a temporary roadblock for my life. I know it has more to give me than suffering, and my work is to try and bring light to what has felt very dark. I think by learning to navigate any experience the right way, it’s never a total loss. Sometimes it’s the very thing that propels us or makes us better. There is always more meaning and a path to discover if we stay devoted to following the thing that makes us feel alive– this usually leads to finding our purpose, our spot where we fit. I guess it’s the days when I know that who I am is bigger than the things that have happened, that I still have things to offer the world, and I accept the course of my day even in its smallness, that I make myself proud again. It’s often not in what I do anymore, but in how I receive each day and whether I live it out as a gift or not.

Even if all I do is try, that is truly enough.

Health, Happiness, #SickPride

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.

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

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

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

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

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

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

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

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

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

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

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

Health, Happiness, Masters

How To Come Home

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

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

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

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

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

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

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

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

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

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

Stay tuned.

Health, Happiness, Home.

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.

No Pets

…

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

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

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

Health, Happiness, Buzzing

Questions Answered.

Everything is weird. I’m still healthy. And that makes things weird. And also pretty great.

I’m enjoying the three-dimensionality of things. The multitudes of personalities I’m confronting. The sounds that one simply doesn’t here in a bed in Southern Louisiana. Everything is distinctly colorful. Of course the onslaught of spring and the prolific products of hers help. It’s a been a long time since my health has maintained in this way. I’m walking a thin internal line, trying not to delve too hard into the why but not altogether ignoring the possibility of its fleeting nature, just like the season. I’m simultaneously happy at this new disposition and also keeping a dark fear at bay. It could all end quickly– a few things. And being entirely reckless hasn’t served me in the past. So I’m keeping these things in mind of course. But trying not to fall down completely into the rabbit hole where incessant introspective thoughts about it all could trap you just as easy as any sickness could.

For the most part, it’s been fucking great. Sorry. F word only every now and then. But it really is nice being able to stand and walk without the typical interruptions and be social and see comedy and do what other young people are doing. I can’t deny I am simply just enjoying the hell out of all of it. Things feel carefree and almost weightless. Life outside of a window at my house, a window on my phone, is really pretty great. When I get worried about the future or have fear of losing it, my mom tells me the same thing; detach from the outcome. And it’s so, so true.

I’m thinking of so many things these days. I’m still trying to put it together. What purpose will I serve with this newfound health? What did I fulfill in sickness? How to matter and find meaning in all of it– the big stuff and the little stuff and the small bits in-between. I’ve been thinking in questions today. I’m going to write them out with my best shot at answers because it’s just the current of my thoughts lately and I’m not going to swim upstream.

What do you contribute the newfound health to?

It could be the physical therapy for my neck which has lessened that pain load considerably. Could be the prescription switch to Trazadone that has me actually sleeping through the night–never mind the night sweats. Another prescription switch from Neurontin to Lyrica seems to help with pain management in general and maybe the increase in energy. Also it’s Spring and I swear to God I’m always at least a little improved in nice weather and my migraines are less frequent. Also divine intervention. I don’t know. Maybe a little of it all.

What happened to sewing, weren’t you into sewing for a while?

Yeah, I was. And I got really excited about some sewing projects. I sat at the Singer Simple 3116 for hours and taught myself the ins and outs of it. I got carried away and excited with ideas. Then I began, and I jammed the bobbin. THAT DAMN BOBBIN. I took the bobbin apart, unjammed it, and put it back together. And now the bobbin is failing me hardcore. I need bobbin help. Anyone? Still, I’d like to get back to some sewing projects. I find it relaxing and I like learning skills that seem to be fading from my generation.

What’s Monty up to?

You know, same ol…

This.

And this.

…This

Always this.

Followed by this.

Let’s talk about tea now.

Drinking this new acai/blueberry/pomegranate mix on the reg. It’s really good. Has there yet been a decision on the universal pronunciation of acai berry? I hear a mix around town. Let a sister know.

How’s the writing going?

I find a lot of reasons not to, but when I sit down and do it I like what comes out. Most of it’s been happening pen-to-page so I’ve been using up my notebooks, which is good because I have a lot. I’ve been on the lookout for a typewriter, but maybe that’s just another fantasy in the works. This thought that some instrument will encourage more writing instead of the truth which is that real writing just requires sitting down and doing that shit. I’m working on that.

Anything else while you’re out here in Neverland typing to yourself?

Yeah I’m reading like 4 books right now and 1 book of poetry. I don’t think this is how optimal reading was designed, but I find my head a little scattered lately. I’m almost finished with The Rosie Project–really funny, really good. Trying to push through Dance Dance Dance (slower than expected). One Dead in Attic is an easy quick read but dismal of course, you know, post-Katrina stuff. The Four Agreements is sometimes rudimentary in comparison to Tolle and Zukav and Nepo, but almost identical in the message. It’s got good stuff. New American Poetry which is proving what I feared–that I don’t really understand how to read poetry. Do you keep reading until you get it? I guess that’s all in the way of books.

And everything else.

For now the goal is to truly enjoy this time of health, appreciating every second where taking a deep breath is easy and sitting isn’t my only option. I’ve held the door for people these last few weeks. I held the door! These very normal things…they’re feeling very good. Clearly I’ve had a lot of doors held for me in my small life, and it feels nice to return the favor.

One last thing:

I saw The Grand Budapest Hotel. I really liked it. Monsieur Gustave..he sticks with you. I’m still stuck on Moonrise Kingdom though. See them both. Make a whole night of it.

Health, Happiness, HEALTH, HAPPINESS!

 

 

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!

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.

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!

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 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 :)

Unwell, Unafraid

I know this feeling all too well.

A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it. It’s the best kind of fitting in. Someone asking you how you are is nothing more than a pleasantry and that’s how I like it. No reason to sugarcoat or think twice about the answer. I’ve yet to figure out a response that feels right, so mostly I lie, and I’m a bad liar. I cave easy. But this is one I get away with. I suppose it’s why anyone lies; it’s just easier. It feels good to give an answer that people want to hear. It keeps a hard reality in the blurry background, and that’s how I like that, too.

On day 4 of my crash, I’m laying on my moms couch in the office. My mom comes in and asks if I am still as weak as I’ve been. I quickly reply ‘no’ and that I’m feeling at least a small bit better. It’s a lie. I can tell because saying it out loud causes some kind of turning in my gut; where the truth would’ve provided solace maybe. I feel just as bad if not worse than yesterday. I’m short of breath for no reason and I’m weak down to my finger tips–peeling my banana earlier was way harder than it should have been. I’m dizzy every time I move. I get waves of nausea that are as close to puking without actually puking as it gets. But I lied. I said I was better. I’m left wondering why I did that. I’ve got some ideas.

Not having to think for very long, the answer came. It’s so easy: I’m afraid. I’m afraid that it could mean what it’s meant before. That it won’t go away. That I could be stuck this way the rest of my life. That I’ll never be able to fulfill all the dreams I have or achieve my notebook full of plans and ideas. I’ve had a one day crash turn into a week turn into 6 months. I’ve watched my life turn inside out and be emptied of the good parts. So often it feels like I’m watching it all happen from the outside. At 26 it felt as though the narrative of my life shifted from 1st person to 3rd, and that’s been hard to get used to. I said goodbye to things I wasn’t ready to. The illness took me over and then swallowed everything in my vicinity too. It was hard. It is hard. Some days, some weeks, some months better than others. It’s just been so “good” the last few months. It seems every time I crash I have to confront everything all over again. I think it will be that way until I fully accept and surrender to what my life might be. I already know the challenges I face, I also know it could be a lot worse. That in the end I have everything I really need. And while my life could be bad like I fear sometimes, it could also be good. great even. And the reason I need to let go of that fear is because what my life can be is up to me. Sick or healthy.

I have to remind myself often that a lot of this is out of my hands, which I have to be very careful with. That kind of acknowledgment requires perspective and reflection and it should never be an excuse. This is surrender, it is not giving up. They are two different animals and mixing them up can heavy the suffering. It doesn’t mean you call it quits and accept that life is shit. I’ve had to draw a lot lines between surrender and giving up and so often I’ve gotten it wrong. I’m ready to start getting it right. Apart from what we’re doing in our lives, the way in which we examine them makes all the difference in its joy or sadness. You’ll know whether you’re surrendering or giving up the same way you’ll know whether you’re telling the truth or not: one feels like relief, the other like defeat. One has roots in reality, the other in fear of it.

I have to stay aware. I have to remain conscious about the choices I am still free to make, and remember that I do still play a part in all this. Of course there are many parts of my life I would change were I able. But how I go about living the rest of my days is in fact up to me. Actually, it is only up to me. Will I choose to react? Will I choose to be a victim? Will I make excuses for myself to justify poor decisions? All of these are possible. And every day I wake up I can think of 100 reasons to choose a darker path. To stew in my own sorrow, to stop trying, to be defeated by something difficult, as if no one else alive is faced with their own challenges. Some that make mine look like a splinter in my pinky. The opportunity to go another route will always be there. You’ll get in trouble thinking that if you choose one good thing, you won’t be tempted by so many other bad ones. You will be. Everyone is, in their own way. Every person has demons to manage and a truth that isn’t easy to sit with in silence, but truthfully this is half of being alive. It’s why you’re a human being and not a turtle in the mud or an insect reacting to stimuli; flying toward whatever is bright.

The funny thing is, what most humans want is control. We like to think we make our own lives and everything is up to us. I disagree with that notion on a few levels and agree with it on others. I know for certain we play a huge hand in our own happiness. But when we get dealt things we didn’t plan for or wouldn’t have picked we feel like we’ve been royally screwed. Robbed. So often I fail to realize it’s not about choosing my hand but how I play the one I got. That has been and always will be up to us.We get to choose how we talk to people and who we surround ourselves with and what we’re going to give our precious energy to each day. What mark will we leave? What will we contribute to the world we’ve been given? Scientists and theologians continue to debate whether we chose to come here or not. Regardless of whether we’re the product of an all-knowing creator or consciousness or the random assimilation of atoms and space, we know for certain our time here is temporary. Loving or hating our life won’t change whether it ends or not. It will end. We don’t get to stay forever. We don’t get a say so in some of the things that were done to us. Every adult has a childhood. Every child had parts that weren’t fair or right. At one time or another, we’ll question every truth we’ve held onto and every drop of optimism we’ve carried. At times we’ll have to fight for our purpose, even if it’s just to get out of bed and make yourself eggs. (That was mine today. Yeah!) We get to choose what we do next with what we have. Will I find a reason to be happy or a reason to be mad? Because I will find both. I can always find both.

I have plenty of reasons to be both. But the last thing I need is to be afraid of what is real. Even if what is real is scary. Life is scary stuff dude. Have you been outside lately?! Even in small doses. Sometimes I have to chop it up smaller and smaller and smaller until it’s digestible enough for me to get out of bed and face the world and find my path and keep going. Doesn’t matter that I know where, so long as it’s forward. The truth moves us forward where lies keep us in the past. Surrender smooths the road for us to navigate with eyes anew, where giving up halts us, traps us in static pause.

I have no idea why even small truths are important, maybe for the reason that even small lies can cause damage. My small truth is that today is the 5th day in a row I feel terrible, and I live in fear that I won’t emerge from it. That the illness has the steering wheel and I’m passenger side. I fear what all the pills I take is doing to my insides. I fear I’ll live with my parents forever. (Sometimes I think they fear it too :) And all of these things are O.K. There’s no need for me to sugarcoat it, lie about it, or fall dramatically somber in acknowledging it. In fact admitting the fear almost instantaneously makes it smaller. Takes away a little of its power.  Today I’m unwell, but I’m also unafraid. I expect to get better. Being quiet and afraid won’t rid me of what I fear. So perhaps better to be loud and honest. Life will go on regardless. What I want to be assured of, and what I imagine so many of us want to be assured of, is that we tried. That we didn’t take being alive lightly. I know I don’t live all of my days like that, and that’s a change I’m working on. Imagine if we could all live in our truth, whatever it is, and embrace each day as though we’d never lost. What might our world look like then? Our lives? Our Facebook Statuses?!

This has all stemmed from one small lie I told one afternoon that followed me around all night and morning. Funny that me confronting a grand truth began with a dumb little lie. But something about it makes me feel in my bones that these things matter. Sometimes I see and feel in myself and others that we’re starving for things that matter but are constantly being fed things that don’t. I don’t know how to begin a shift, but I know to make changes on a big scale, we must first begin with ourselves and live honestly. It’s our job to dig deep within, listen to our intuition, and be human for one another, not at one another.

I’m still tying all of my thoughts together. Still looking for answers and often coming up short. Sometimes I can feel the strings of my reality ever so slowly weaving together and making something whole from many mismatched parts. That’s what so many days feel like. Raking through the muck and finding the good parts. Then making sense out of the bad stuff left behind. The fear and pain and anger, there’s a lot of answers in them.

I’m sharing this beginning with anyone reading. (All six of you)  Maybe somehow, it’s something we all work towards together. And whether this is just a stepping stone or a small premise for something bigger, it doesn’t matter. This can be the start of something new, even if it’s very very small. And I can look back at this oddly cold day in January, where besides the frozen leaves outside, it would have been business as usual. But it wasn’t. It isn’t. Where a small lie would have left me afraid, a tiny truth burrowed out instead. And in my repetitive life, maybe this is the start of something new.

Health, Happiness, and I Ain’t Scurred

Just Kidding I’m Still Scared