I’ll Take ‘New Years Eve From Bed’ for $1000, Alex

Sometimes life is so tragically hilarious that you could laugh or you could cry, but when you’ve shed enough tears to fill a pool, laughter is nearly the preferable way to go. If you can swing it.

I’m laughing because it’s New Years Eve, I’m in 5 day old pajamas and have only left the house by being driven by my parents to urgent care over the weekend and for x-rays, blood work and an ultra sound at the clinic today. Now I’m at home, listening to the coonass neighbors set off what sound like homemade bombs, Monty is never more than a foot away from me as he’s afraid of what I can only assume he must assume are the end times out there…

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This is basically the funniest picture of Monty I’ve ever seen. It’s like he’s trying to play it cool like he’s not scared, but it’s all gone horribly wrong 

OK so then on top of this somewhat sad, funny setup, there I was watching The Antique Roadshow with my parents. Marc was already half-asleep in his chair. Well, I’m 34, I’m going to kiss Monty for NYE, and it’s anyones guess how late I’ll stay up. Then around 10ish my mom told me she was exhausted and going to bed. I’m at home now, attempting to write, which I’m deathly afraid I’ve forgotten how to do so excuse the caca that may emerge through the next few posts while Stella gets her groove back. The point is, I’m 34 and peeing every 20 minutes and I doubt I’ll make it to midnight. Unknown  Now that’s comedy! At least we’re not watching My 600 Pound Life…that show can really get you down.

Anyway, I wonder how many other asses were kicked besides mine due to the intrinsic chaos attached to the Holidays. Because you can considered mine booted. Crashed and burned. And it’s raining outside! Some easy reasons to be blue, but rain is actually a huge part of why I love living in the south. My dad always said rain was a sign of balance–and on every occasion some small shower falls from the sky and comforts us all in some way that he’s still there…still looking out for things, even when they’re a catastrophe. Maybe this year it means the scales will tip a little further in the direction of help for the MECFS demographic–help even the ‘playing field’ when it comes to our efforts for change. Maybe I’m just a hopeless romantic. But hey, he’s helped out before.

The biggest bummer besides my body failing is that cognitively it’s been spaghetti brain all over the place a lot of this year. Especially the last 6 months. And it seems like the brain needs rest the same way a physical crash requires one. But writing is my outlet. I feel angst when I don’t write here. Doing it forces me to remember, be patient and grateful and most of all, to help restore my hope. It’s aways been something I can do despite being sick. So to not feel like I can creates a void among voids I’m already fighting. It’s hard to know when to just stop and take a break, or when to just keep writing through it, even when it seems to kind of…suck.

I write through a lot of it and post very little. I tell myself I’ll stop doing that because that fear of bad writing can really tailspin into no writing, and that’s the worst you can do. Inspiration can hit you in the middle of doing what feels like crappy, worthless work. And it seems less likely to be struck by anything meaningful when you’ve turned your back on trying because you’re afraid it will be bad. Sometimes it will be…I think you just write through it. Or you become a lowly loser blogger whose only readers consist of your sister and your aunt Amy. They were the first followers of this blog :)

Writing and thinking and speaking coherently have become so much harder this year. Half of it do to the meds I have to take to control the RLS and skin crawling, where life is just not possible without the treatment. When I picture my brain I see a six lane highway with bumper to bumper traffic that spans for miles with no way to exit besides getting out and walking. It’s so cluttered up there, forgetful and all out-of-order. Luckily it is the pace of writing, its’ patient ability to wait for me to think of words, that allows me to continue. Unluckily, it takes me so much longer to write than before, and by the end I can’t gouge if it makes any sense so I skip it and say I’ll come back to post later. Guess who doesn’t post later? So there’s about six….thousand… of those suckers just open on my computer, waiting to go somewhere. I just need to stop being a pansy and post. What’s with this damned hesitation? Good grief.

It hit me this year how hard it is to be around people who aren’t sick simply because it brought me up close to what a typical life looks like. I tend to forget how dysfunctional mine is. I watched as they would make breakfast and listen to loud music in the morning and carry babies and take showers like it was nothing. Of course it’s nothing. That’s what a healthy life permits you, and so it can be a bitter reminder of the things that are marathons for you, when you see just how easy they could be thoughtless tasks. But this is why sickness is always encouraging consciousness if you’re to live with it and find peace at the same time.

If you kept a list of “can no longer do’s’, you’d run out of paper and possibly lose your mind. In day-to-day life, you have this *creative challenge* we’ll call it, to just hang tightly on to what you can do, what you have, and squeeze the hell out of that lemon for all the juice inside it. Years ago I had to learn to start counting up, not down, in my everyday life in order to keep going. To find momentum, purpose, laughter, creativity–all that cheesy crap they write on picture frames at TJ Maxx–you’ve got to find your small pieces of joy and feed them until they start to return the favor tenfold.

It would be easy enough to be depressed on a day like today. It’s New Years Eve, and I know my friends are picking out fancy outfits for the night. They’ll drink and dance and party. Since we spent most of today at the doctor getting x-rays and ultra sounds and blood work after a bladder infection seemed to move to my kidneys, I think it’s safe to say there’s no partying for my NYE. But that’s OK. I mean it sucks, it’s OK to say it sucks, but it’s OK too. I mean here I am talking about my bladder to strangers on the internet! Should I get into my bowels? I won’t, they’re fine.

I really wanted to write tonight because I was thinking of all the people in similar situations as me–particularly all the sickley’s out there. I just wanted them to know that if you’re feeling low, well 1, that’s understandable. But 2. try hard to remember you’re not alone in all this, even if you’re by yourself. I know it’s difficult  to take that seriously. But I also know how isolated it can feel when you turn on the TV and see two million people partying in Time Square while your miles away in PJ’s, in bed, etc. I hope you remember how many others of us there are, going through the same or similar experience, missing out on overhyped parties and whatever else is happening out there.

We’re still connected to each other in some way, and I don’t know how to convey it exactly in a way that really eases the loneliness that nights like these tend to reinforce–but the numbers don’t lie. There are millions of us, all in similar boats. And we don’t have to know each other deeply to know we’re out here. I’m one right here!

Let’s also not forget, we tend to imagine these elaborate parties with tigers on leashes and super models serving champagne on a rooftop with views of NYC, but they’re never as good in reality as they are in our minds. Tonight is just a change of numbers. Tomorrow will be back to normal.

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The difference is that it’s 2019, and I plan on working so hard and creatively with my efforts in getting the NIH to see what they don’t appear capable of seeing. -We’ve already made a breakthrough, (more on that next time) and established an important connection. Was their response satisfactory? Haha, NO. Not by a long shot. But this was just one of the first steps, and there will be many more to come.

I would ask anyone at midnight to just stop and focus their attention for even a few seconds on major change for MECFS. Think about the things you want to happen, even if it seems obvious, and send it out into the world. Maybe the desperate changes we need will converge somewhere in the universe, meet over some remote place above the Atlantic Ocean and help make things work in our favor. I believe we can do what we’ve set out for. We just have to continue to help each other, support and carry one another through when the work is too heavy, and never lose hope that we will get through to the right people and that the work we’re doing is crucial.  We will attain the change we need, I know it. At midnight that’s what I’ll be thinking of, and I hope you’ll join me.

I truly hope everyone had a happy holiday, sick, well, or in-between. I’ll see you tonight in the stars somewhere. I wish you all the best, and if you’re like me and you’re going to kiss your dog at midnight, maybe also make your wish, kiss your fingertips, and blow it out into the cosmos. I believe in the power of energy if nothing else. Whatever you do, don’t lose hope, as impossible as that can feel. Try to imagine how amazing it will feel when our efforts come to fruition. The advocacy world has made some major progress this year. Now, we just need to get the government to follow our lead :) easy peasy! I think 2019 will have much bigger things to come, so hang in there with me. I need ya.

Health, Happiness and HapPEE New Years!

**I promise this is the last blog that’s so long. I’m fixing it, ok? My brain is thinking in non-sequiturs. I’ll fix it.

Home Somewhere

Having the chance to travel anywhere is always a gift no matter how large a cluster it usually is, and I try to remind myself of this no matter where I go. The process of going anywhere can so often be grueling in just the exhaustive process of preparation before you even leave the ground. But I’m lucky I’m able to do it at all, so I pinch myself when I catch those curmudgeon-y thoughts pop up about the unconscionable sound of airport bathrooms and the logistical nightmare of planning around 7 different doctors. But you prepare well and you try to go with the flow and be grateful you’re making it out anywhere into the big chancy world. A change of place can do wanders. 

I’m back in my half-hometown of where most of my moms family lives and it’s always feels good to be back. Sometimes it feels like a dream that we ever lived here, like it was so incredibly long ago when it really wasn’t. It even smells the same, and I’m not being poetic. Grand Junction has a dessert flower, pre-rain, stony smell to it, recognizable as soon as you step foot off the plane. Like all smells it brings back a lot of memories, most of them good, rose-colored childhood memories. It’s also a reminder that even though the South always comes to mind when I think go that word, home, New Orleans in particular, having a huge family in one place feels rivals that same feeling. I’m here for my cousins wedding, a girl who’s diapers I really did used to change. As much as time can feel like it’s hardly moving at all, a wedding always does the trick. Hard to believe, fun to see, good to be back. 

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Here’s 1/20th of us, Attempt #37

The scenery is so different here and the weather is exceptionally preferable to that of Louisiana in the summer. I mostly mean that in the sense that the humidity factor lingers under 30% here, and going in the shade will actually dry you off if you were to break a sweat, and the nights—they do this thing where they cool down! Considerably. I’ve probably become a pansy since living in a tropical climate, but I actually require a sweatshirt at night. Ridiculous. 

I feel happy I was able to make this trip. Of course, I am a sucker, over-protective and absurd companion to Monty, so traveling without him actually means I miss and worry about him. It’s a dog, Mary. How many times I’ve heard that phrase! And it’s understandable; I admit to being obnoxious about the dog, but hey, we’ve been through 10 years of hard boiled life together, and that decade has been a roller coaster of triumph and tragedy that has challenged me more than any other time in my life. But all the while there’s been one constant, one love that’s stood by and treated life as though all of this were supposed to happen–as though nothing really happened at all. There’s a strong bond that this kind of constant forms, and Momo and I have it. Friends, boys, family, have all drifted in and out, because that’s just how life works, but the dog has been there every morning, sick or well, and every night at my feet or by the side of the bed.

The fact that he’s adjusted to my life changing the way it has, has always held an underlying encouragement for me, I think. Some contagious perseverance, that while circumstances change in big and small ways, there is still always a path back to your self, and it doesn’t have to revolve around anything external. Before getting sick, my thinking was more along the lines of the latter. I’m still learning how to do it of course, but at least I see it’s possible, and I’ve discovered myself in places I would never have thought to look before. Monty has adapted to all the ways I’ve changed, and so I take pages out of the Life and Times of Monty all the time. Dogs are so good for people, and Monty has been a huge gift of grace for me. Just loving him makes me happy. I know I won’t have him forever, but I’ll always have what this decade of he and I has brought to me. It’s a love and an experience that has actually become a part of me. It will always be there, and I hope I’ll always use what I’ve learned. From a dog. What I’m getting at is I miss my dog OK!? He’s in good hands though so what I am babbling on about? Jeesh.

Colorado. Right. It’s nice here. When you’re sitting on a bench outside and it’s a dry 75 degrees and you’re surrounded by mountains you think Wait, why don’t I live here again? I always wonder if my family will all end up back in Colorado some day, one by one. It’s not totally out of the realm of possibility. But there’s just some part of me that lives and breathes in the South, in all its ridiculousness and crappy weather and cock roaches the size of your hand, I find it easy to call home. I guess you can have multiple homes and they all live inside you instead of the other way around. 

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My grandma tells me how often her and my grandpa moved while raising my mom and her five siblings. She loved it. She always said it was adventure, they made new friends easily and by now in the later stage of her life, she has friends and family all over the country. She never sounds sadly nostalgic or mentions the awfulness of goodbyes when talking about leaving a place behind—which is where we differ. That idea scares me to a somewhat dumb degree. I don’t remember always being this way. I studied abroad for a semester in college, and it was the happiest time of my life. I get nostalgic about it a lot, but I should be more grateful than anything that I was able to do it at all. I’ll always have a little town in France I can tell stories about. Besancon—a somewhat unexceptional place, perfectly provincial and French with little English spoken. I loved it there. I was slightly afraid to go and yet I made some of my best friends within the first two weeks. I fell in love. I wrote and became more of who I’d always been but never completely let materialize. I learned how to be happy again after The Year the Universe Shit On My Family. It’s funny how just a change of place can change everything, and for me, that year, it really did. I’ll always hold those memories as if they were tangible items in a lockbox. Maybe one day I’ll go back, maybe I won’t. But maybe because those memories are so alive inside me, so much so that I dream of the place and the people all the time, that it doesn’t matter ultimately. In my own way, I’m still there. And it’s still here in me. I expect it will always be that way. 

Right now I’m writing from a house in Vail Colorado, at roughly 10,000 ft above sea level. In Grand Junction the altitude wasn’t an issue at all, but since we arrived here a few days ago, I can feel a marked difference. The air feels too thin to adequately inflate my lungs, making me perpetually catch and take a deep breath. It’s like there’s a good sized monkey sitting on my chest at all times. All that would be no big deal, but the dreaded weakness crept up the first morning here and hasn’t left since. I’ve been pushing it so maybe it was a crash just waiting to happen. But it feels more like an altitude thing. So I’ve surrendered to going out and doing things, which hasn’t been hard because the view from the house and seeing the wildlife (in the wild!) and spending time with family and has been more than enough and worth feeling like a useless limp noodle.

Every morning and night the deer come right up to the house to eat. Yesterday I saw a mom and her babes, a young buck and a doe. The buck was the last to leave, but first he looked straight up at me on the balcony and we stared at each other for what felt like forever. At the end of that long, quiet gaze, a sports car that looked like the bat mobile and was loud as a jet engine revved its gas as it drove down the mountain road not far below us. I swear the deer simultaneously rolled its eyes with me. I had this recurring thought of What a moron! as the sound of the bat mobile echoed off the canyon down the weaving road. I don’t even know why really, I guess because I hate noise. But I also couldn’t help thinking the young buck was thinking the same thing. Who knows, maybe he’s into sports car by now. 

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Goodbye lil Deer. It’s been real.

At any rate, it’s incredible to be in the middle of the wild. It’s too bad I’m a slow moving wet blanket taking up space and hogging all the oxygen. But the family doesn’t seem to mind, and the surrounding beauty makes up for any physical discomfort. Waking up to mountains is something that I’ll always hope is at least an intermittent part of my life. I think returning to sea level tomorrow, to the crushing heat and weighted humidity, I’ll take a big wet breath of air, maybe finally catch my breath, and I will definitely know I’m home. At least, at one home. 

Maybe for now, home is wherever Monty is.

Health, Happiness, Doe! A Deer. 

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.

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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.

Blasts From the Pasts

Most people have at least one box filled with kept remnants from their past. A lot of mine is in a brown moving box that says “Mary’s Stuff” on it, and for whatever reason my mom gave it to me out of the blue the other day. Maybe she was spring cleaning, or maybe just trying to downsize on 4 kids worth of crap in her house, especially considering that we’re all fully grown. Anyway, the box was in my hands now and last week during the indoor weather, I started rummaging.

I don’t consider myself a pack rat at all, but I also don’t know any actual pack-rats who do… But for whatever reason, starting in 6th grade…I started saving notes passed between me and friends, boyfriends, siblings, all of it. I kept them in a K-swiss shoebox. And this ridiculously faded, clumsily folded note that said “Mary” in terrible handwriting was one of the first I saw in the box, and as I started unfolding it immediately I knew what it was: A note from my 6th grade love, Kyle B.

Dear Mary...

Dear Mary,

Hi!! This is the “big surprise.” Well all I wanted to know is will you go out with me? Don’t worry about saying no, I don’t care. Well I do care, but, well uuhhmmmm You know what I mean. 

Ms. Snifferjohn is a loser.

I like The Land Before Time it is like my favorite movie. Besides about a million others but that’s not the point.

Love,
Kyle B (Baseball Cursive signature)

*To begin, Ms. Snifferjohn was our substitute teacher and her actual name was Ms. Schneiderjohn but Kyle had nicknames for all the teachers. Especially subs.

The truth is Kyle had been my on-again off-again boyfriend since Kindergarten. It was all completely a matter of semantics. We were best friends and every now and then the title would change, and that was it. I liked him because he was weird and hilarious and made fun of everything. In 6th grade we finally hit first base and held hands at the roller rink. As we skated hand in hand to the cascading neon lights and what I can only imagine to be Jewel or Sarah Mclachlan or Chumbawamba playing, my best friend Brittny skated up to us with urgency. “You’re doing it wrong! Your fingers are so supposed to cross!” We were holding hands the old school way; the way you do when walking a child across the street. We fixed our technique and skated a few laps and then I don’t know what–got a sugar high from sour straws and Dr. Pepper probably.

The next thing I found was my retainer box from 7th grade with my retainer still in it. And yes, I tried it on. You have to!  It only half fit. I never wore that thing, and lied to the orthodontist at every appointment. “Wearing it day and night?” “All the time!” Altogether I probably wore it 10 solid hours. But I didn’t get bad feedback from the doc so I felt OK about it. The best part? It’s a translucent baby blue retainer with a little earth icon in the middle and two little rainbows. I make terrible decisions under pressure.

One of my favorite finds? These pictures of my mom. I never see myself in my family even though people tell me we look alike. But when I saw one of these pictures, for a split second I glimpsed my face in my moms. Finally I could see it–I have her exact chin, the shape of her mouth, her nose and her “good-sized” head and big thick hair. Of course she is incredibly more glamorous and I love how youthful and in love she looks in these. (She was, this was a few months before marrying my dad) But it finally clicked. I am that woman’s daughter.

IMG_8731 IMG_8730

IMG_8732 IMG_8733

Next is a signed post-card from Dominique Moceanu. She was my second favorite gymnast after Shannon Miller. But I’m pretty sure she divorced her parents after they tried to take her money or something, right? Anyway, still got the card.

Then came a lot of stuff from high school, which only solidified my memory of how excessively terrible high school actually was. For example, take this note from my friend Meghan.

My grandma died. So how's things with Tyler?
My grandma died two days ago. So how are things with Tyler?

Can you believe it? This poor girls grandma died and all we talk about is my going to lunch with Tyler. I found about 6 other notes on this very topic. Then came notes about whether we had gone on a date yet and then whether or not we’d kissed. Reading the notes brought back my exact feelings from those four years; that I took none of it seriously. The boys..the scene..class..any of it. I tried. I wanted to be cool and sometimes I succeeded, but mostly I felt lost and everything felt really forced. I was so glad when it was over. That’s the best part about high school. There’s a true end to it. Soon it all fits in a box that you get to make fun of later.

Next is an essay test from my AP Literature class where we had to use  principles from Machiavelli’s The Prince to analyze characters and events from Shakespeare’s Richard III. I remember nothing from either of these, but I scored a high B on the test which for me and for the class, was very good. This must have been my last empirical display of effort on my part that year, because by the end I’d basically given up. I actually ended up failing Literature! And really for no good reason. I stopped caring and also I just sort of hated school. I guess that’s why I kept the test. To prove I was literate. (All evidence to the contrary given the content of some of these notes)

It’s funny that I write about these little treasures from the past today, because I also just found out that today is my dads birthday. He would have been…old, I don’t know. But I found old pictures of him and us together and it’s always good to see those and to remember. So many years go by and your life changes in so many ways. New memories stack on top of old ones and pretty soon you’re having to struggle to remember the sound of their voice and the things that used to be fresh. I don’t feel sad looking at them– I like to see proof of our happiness when he was around. I ache more out of a fear that I’m forgetting him. But maybe by him just being a dad, I’ll never really forget. He’s in me, and in all of us. Each member of the family carries a part of him with their own memories and I guess that’s the stuff that lives on longer than the person.

It also had me wondering if I’ll have a daughter one day who will look through her box of childhood leftovers. Maybe she’ll too see a photo of me and realize our connection. Maybe she’ll read this blog and wonder about my sanity. More likely? I’ll read this blog in 15 years and think OMG I was so stupid! Maybe that’s just how it works. You get older and grow and laugh at your old ways. Life has been hard but it’s been incredible too, and I guess I’m glad I’ll have these words to look back on–remember these years I was sick with nothing to do, but document my days of doing a lot of nothing.

Health, Happiness, Childhood in a Box

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

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.

The Eighty Year Old Twenty Year Old

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

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

 

Air please thank you.
Air please thank you.

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

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

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

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

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

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

Health, Happiness, Twenties.

Tiny Little Worlds

Most mornings start out the same for me. My eyes peel open slowly like velcro. My insides feel like they want out. Everything feels out of balance. I throw pills in my mouth, make my pot of coffee, let Monty out, and wait to feel human again. It isn’t the best…mornings have always been the hardest. But roughly an hour later, I start to feel better. The pain subsides. The disoriented, dizzy haze fades, and I sip coffee slowly and let my thoughts organize themselves. Once I’m human again, Monty starts making noises that imply if we don’t go outside and play in the pool soon he is going to explode or implode or something of that nature, so we go. He jumps in immediately, I sit in the water on the first step, and the day really starts. I’ve come to love our routine. It feels good spending so much time outside. Especially after a year of feeling  so imprisoned to the indoors. Lately, the last step of morning involves saving frogs from the pool. They are really tiny; cute actually. Usually there are at least 5 of them. I try to keep them together, like they are some kind of family I’m rescuing and I don’t want the children to get separated. I have no idea why I feel this obligation to save them, but I do, and so I do.

small friends.
small friends.

They are such incredibly small animals, sometimes I just watch them. I feel bad when I find a floater who didn’t make it. I scan the sides of the pool twice where there are usually one or two and then the two round filters that catch the extra debris. I then usually carry them to the nearby ditch so they can hangout in natural water. Last night, Monty was muddy so I walked him out to the pool to clean him off, (this is now what we consider bath time) and when we approached I heard a loud splash of something that jumped in. When I looked in the filter, a huge frog was in there, spinning from the pump circulation. Certainly he would have died in there. The steps are too deep for them to jump back out. I took him from the filter and released him in the garden, and told Monty to be gentle as he sniffed up close after every hop he took. Then I played “Folsom Prison Blues” to him on my guitar because I learned that song recently and it’s really fun to play. And what’s the frog going to do? Walk out on my concert? Come to think of it that is what happened, but you see my point.

Anyway, it’s interesting to look at such physically tiny life that we normally never see. There’s plenty around here. Including wolf spiders that are INSANELY large and terrifying-looking, but ultimately harmless. So when they’re inside I catch them in plastic cups and throw them outside, basically screeching the whole time because if it escaped the cup and crawled on my hand I’m pretty sure I would pee myself.

Dear God.
Dear God.

There is a huge variety of birds; there are mice and turtles, spiders and lizards, and even these tiny bunnies that Monty chases away. I like watching their world. Something about it makes my problems feel smaller, and I don’t know what the explanation is for that.

Snapper?!
Snapper?!

Anyway, I really don’t like killing anything alive. Especially because I don’t feel like they are in my territory but that I am in theirs…and it seems so pointless to kill them. There was a time I wouldn’t mind killing tiny things, I think. But now the idea doesn’t sit right with me. (Except mosquitoes, screw them.) So I catch them and release them. Save them from the filters. If anything, it helps me feel like I’ve done something. There are many stationary days. Sleep filled and cloudy. It makes sense to save something from drowning if only because I haven’t done anything else that day. I don’t have to, but I can. Might as well save a frog or five.

Health and Happiness and Little Tiny Worlds

Frog on Shades.
Frog on Shades.
new frenz.
new frenz.
finger frenz.
finger frenz.

Today Is Wednesday.

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

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

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

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

Mastery of Life is the Opposite of Control. -Tolle

Health, Happiness, Wednesday.

The Only Gift to Give

(me)
(me)

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

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

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

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

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

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

Love,

Mary (and Monty)

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

Health and Happiness and Happy Mothers Day!

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

Life In My Parents Pool House

So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.

What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.

Woo!
Evil Polaris EVIL POLARIS

Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!

Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:

  1. No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
  2. Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.
  3. No guns.
  4. All dogs allowed! In fact, no humans without dogs.
  5. What happens at the pool house stays at the pool house. Like swimming. And scrabble.

So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.

Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:

“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”

It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.

Health, Happiness, Pants.

Back To New Orleans.

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

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

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

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

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

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

Health, Happiness, Home.

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

That New House Smell.

I’m sitting upstairs in my new bedroom in our new house. After eight months in an apartment complex I called the “California Projects” for many reasons, most recently a murder in the apartment above us, it feels good to be in a house. A real house. There’s a yard and a small playground. My room has a bay window; something I fantasized about having as a child, and now at 28, my window dreams came true. There are men downstairs installing the floors and speaking in Spanish. In typical white girl fashion, I say Hola! and ¿Cómo estás? and that is all I know so that is the end of the conversation. They are nice. I wish I could creep on their conversations, but I chose French in college which, outside of my semester in France, I never ever speak. Except for my dreams and a French dude I sat next to on the plane last time I flew.

The people who lived here before us hadn’t paid their house note in two years. They are one of thousands among Southern California and America whose eyes were bigger than their wallets. Their inability to pay made for a steal on the house but an insane amount of paperwork and complicated buying contingencies. After a lot of back and forthing, Amelie and Keegan got the house, and then tore out all the ugly stuff. Right now we don’t really have a downstairs with floors, or a kitchen or a living room. So I hang out in the yard with Monty and notice that when the old tenants kids were younger they carved their names into the cement on the side of the house. I feel a little bad. I’m sure when they moved in however long ago they figured this would be their house for life. But I guess it’s a lesson thousands of Americans learned these past few years. It makes me afraid of money. Which is fine because I don’t have any.

I mark this move as a symbol of better things to come. The last apartment was both literally and figuratively dark. There was definitely not enough windows and the light that shown  in my bedroom came from fluorescent bulbs that burned in the corridor outside my room. Yellow and artificial. I spent my sickest days ever there. On the couch or in my bed. And those steep stairs you had to walk down to get to our place–my God I hated those stairs. Each one I cursed when I walked them and my legs were shaking with weakness. Screw you screw you screw you screw you screw you. All the way to the bottom. Or the top. Didn’t matter, I hated those stairs, and Sunday was the last day I had to walk them. I flipped them off from the car as I drove away from that apartment. In my mind that song “Movin’ On Up” played in my head and I hoped that this literal upgrade would also be the symbolic mark of how all of our lives turned around. How once we moved, everyone got everything they ever wanted. But even I know that’s not how it looks. Still, a girl can dream. Only good things here. Leave all the crappy stuff at the bottom of the stairs or in my old closet with the broken door.

Now we’re in real Suburbia. A three car garage and neighbors that say “Welcome to the Neighborhood!” You can hear kids playing outside and there are minivans and such. It’s a nice street in a nice neighborhood and you don’t have to go down any stairs to get in. Now when my large and loud family visits, there will be room for us- presuming we don’t all spit out a baby in the next nine months. But hey, you never know. Although last time I checked you have to have sex in order to have a kid, so, you know, I’M GOOD THERE. Monty is my one and only, and he’s happy to sleep on the floor. Here’s some pictures from the heart of the burbs. Enjoy.

Health, Happiness, Suburbia

Monty enjoying the new view.
Monty enjoying the new view.
Someone loves Taylor.
Someone loves Taylor.
Tiny furniture left behind in our sand box.
Tiny furniture left behind in our sand box.
A neighbors astroturf af lawn.
A neighbors astroturf lawn.

Dog Spelled Backwards

 

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

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

 

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

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

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

 

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

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

 

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

Health and Happiness and Keep On Keepin On.

 

Home Is Where the Holiday Is

A funny thing happens after you leave your parents house and go off to college or out into the world to find whatever needs finding. You start making connections with people and places that aren’t familiar, that aren’t necessarily where you grew up and learned how to be you. Most people go through some sort of transition, often in their twenties, where home base may turn out to be far away from the original. Now more than ever, I don’t have a short answer for where home base is. When people ask me where I’m from, I have no idea where to start. “Well I was born in New Orleans, but I grew up in Colorado until we moved back to Louisiana when I was 16.” “Why did you move back?” “Oh well, my dad died when we were living in Colorado. But then my mom met and fell in love with someone in Louisiana so we moved back. But then THAT GUY died too. *Pause for uncomfortable silence and obligatory “Sorry to hear that.” “Oh my gosh I’m sorry to hear that!” “It’s cool. She ended up falling in love a third time and has remarried again! But lately they’ve been in Colorado, where my moms family is.” “So why are you in California?” “Oh, well I came out here to dog-sit for my sisters in-laws but then I became increasingly ill and have kinda just been living on their couch since September.” “Sick with what?” “How much time do you have?”

My life has never really had a lot of stability. Moving in the middle of high school from Colorado to Louisiana kind of threw everything off. I attended three different high schools and once in college, like most kids, we moved every year. I studied abroad one semester in France where my home was the tiniest room I’d ever lived in, but it was completely comfortable and adequate. I loved it. I spent summers in New York where my brother’s apartment on Lexington was home. After college I moved to New Orleans and got a grown-up job. I finally had an apartment I loved (huge windows) and I lived alone, which I really treasured. But I only had it for 6 months. Getting sick in January, riding in the backseat of my parents car after that day in the hospital, something told me I wouldn’t be in my own home for a long time. And that certainly turned out to be true. Since that night, nearly two years ago, I’ve been living in other people’s houses. I’m lucky I have so many people willing to host me. But truthfully, I dream of the day when I can have home base back. When I can have things the way I want them. When I’m not stepping on anyones toes or breaking whatever house guidelines there are. Living with people is tough at best. And that’s the case with most everyone. If I want the comfort of “home” I have to go inward. Feel who I am, believe in what I’m doing, and trust that I am where I’m supposed to be. Isn’t that the comfort of “home” after all? A place that knows and understands you, a constant among change, a softness where the world is hard.

I remember thinking the universe was playing a cruel joke on me. Finally after years of bouncing around, dealing with the work of roommates and compromise and “Who ate my burrito?!” texts, I had my own place. I was settled. Just me and Monty. I hung curtains and picked out an area rug and was finally living in a space I totally identified with. I remember picking out decorative pillows thinking, “Only an adult buys decorative pillows!” Maybe it’s a desire among the youngest in families, to finally feel like an adult. I don’t know, but I was on my own and that felt really really good. And then, it was gone. As much as I loved the independence, I had to let it go, because being sick didn’t allow me that self-sufficiency I had earned anymore. I would have to learn to rely on others, to ask for help, and to be appreciative even if I felt bitter. It’s been one of the harder lessons to learn among all this–Humbling at best. Turning bitterness into gratitude is like trying to fold a fitted sheet- I’ve heard it’s possible, but I’m rarely able to do it. They’re both art-forms I am still trying to master.

So now here I sit in Colorado, in the town I grew up in, at my grandmas house. It still has the familiar smells (somewhere between a library and church) and familiar sights (the picture of me from kindergarten on the great wall of grand children.) and the same rules (Everyone write your name on your cup and drink out of the same one!) Is this home? Or is it California? Or New Orleans? Well, for the next week or two, it’s here. Where my siblings and nieces will shuffle in from all over America and make lots of noise and pull lots of pranks and inevitably play a game of monopoly that may or may not turn ugly. Where we’ll eat big meals and fight over who my moms favorite is and sing songs off-key around my brother Doug playing piano. There will be dogs and babies and gifts that nobody needs. But the best part about love is, it doesn’t need a certain city or house to flourish. It can grow anywhere. I suppose that’s another art-form I’m attempting to master. And I guess where love grows, is where I’ll call home. This Christmas, it’s Colorado.

Health, Happiness, and Happy Holidays– Wherever Home Is.

For Some Reason, This Gem Is Still on the Wall.
I’m going to use this pose in all my pictures. .

“Home is where you can say whatever you want, because nobody listens to you anyway.” :)

-Joe Moore