Getting Clean

I really, really need to bathe. Let’s start there.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you  have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that  when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think.  And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

Health, Happiness, Hygiene

Under Water.

I need to spend more time under water.

Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem.  At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.

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Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.

Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.

On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.

I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of.  The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.

So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?

Health, Happiness, Thirty One.

You Don’t Have to Understand It (I Don’t)

About a month ago, my dad appeared at the doorway to my bedroom. He was smiling like usual, wearing his favorite striped terry-cloth robe. It’s still hanging in my closet. I was happy to see him; I’d been struggling with something and whether it was with words or a hug, his presence is always a help to me. He entered the room quietly and sat on the edge of my bed. I began speaking and started to cry. The grin he was wearing didn’t waver at all, he he waited and listened with total attentiveness, the kind you rarely find. His calm demeanor and ease despite my tears comforted me, as though he knew something that I could not. When I paused he said “Be strong Mary,” like some kind of Indian warrior, but less warrior-like. He continued to smile as he spoke and reminded me, “You want to make sure you’re loved for the right reasons.” This felt like both a question and an answer. It sounds a little vague, but I could feel distinctly that I was heard and he understood me. His words were minimal but powerful; they gave me what I needed. I felt lucky to have him. Then, it was over.

The brash sunlight in my bedroom bursted in through my blinking eyes as I left one world and awoke firmly in this one. It’s bizarre but it usually happens the same way: In the first moments of consciousness, the dream plays out in its entirety in reverse, in maybe one or two seconds. But this recollection doesn’t seem to happen in my mind. It’s as though it comes from the center; my gut or chest. Then, it arrives in non sequitur bits and pieces and my mind immediately begins to reassemble them in order. In those first moments of wakefulness, the experience feels so entirely tangible and fresh, so within reach, I’m convinced if I close my eyes tight enough it will all come back to me. But most of the time there’s no going back. While the dream itself is sacred, there is something Holy in waking from it too. I have felt God there. It’s as though dreams give access into the eternal, and in those first blinking moments, the human mind hasn’t caught up yet. In this little pocket is where we can sit with the phenomenal before our thoughts flood in and diminish it into something digestible; something that makes sense.

The dream visit is like the Cadillac of post-death interaction. It’s a chance to see and hear and feel someone that you don’t have physical access to anymore. I feel extremely grateful when I have dreams with my dad. Beyond the refresher for my senses, there is power in them. I was given advice and comforted yes, but I felt actual love through that dream. I drew strength from it and I’ll treasure it among the other great memories I have of my dad. And that had me thinking. I’m always hearing people say that dreams “aren’t real” or shouldn’t be examined because they’re just imagination or a meaningless summation of random events and mostly just aren’t true. Of course, this has roots in pragmatism. A dream that your best friend is living in your refridgerator doesn’t mean that they are, hopefully. But I’ve been thinking a lot lately of dreams I’ve had with my dad, especially this most recent one. I’ve been recalling it, as though it were a real memory. And I’ve been trying to discern what the difference is between an actual conversation like this and the one we had in my dream. Didn’t it really happen? Isn’t it now a real memory? When you read the first paragraph, did you have reason to think it wasn’t real? It did happen. Not in our dimension but in some dimension. However unorthodox, there is still meaningful interaction between us. I don’t pretend to understand how it all works, but I know it is true. It feels as real as a phone call with my brother last week, or the heat of the sun burning on my neck.

Two weeks ago, we celebrated his 67th birthday. We always cook his favorite meal and group-text photos of the food like a bunch of nerds. We caption them with the funny things and phrases he always said. It’s happy. It’s a chance to remember him and hear his stories and the awesome things he did or the weird songs he sang on his guitar. It’s all an opportunity not just to celebrate but to know him better, which I’m perpetually trying to do. For a long time I didn’t allow that to happen. Since I didn’t truly grieve him until college, I entered my twenties still knowing and remembering him as my 12-year-old self. There was a chunk of time when I shied away from talking or hearing about him, afraid it would make me cry which I hated to do in front of other people. It pained me to see other people cry over him too. Grief was something I had to learn, it didn’t come naturally. And whether I had cut myself off intentionally or was just too young to process it all, I had also cut myself off from getting to know him further. I unknowingly stunted our relationship, which I assumed was something that couldn’t grow once he was gone anyway. I was wrong, as it were, and so occasions and stories were just reminders he was gone.

It wasn’t until after facing and enduring the big parts of grief that things changed in a big way. I could finally begin to know my dad as my older self, not as a 12-year-old. I began understanding and appreciating him in new ways, and my love for him grew. It was then that our relationship began to evolve past sentiment and allowed for interaction. He existed as more than just memory, which was so fulfilling in my life. I found myself looking forward to any occasion regarding my dad. I love(d) to hear peoples stories about him and the wide open way he loved and lived. New stories and photographs all offer another glimpse into his life and who he was. I’m still putting the pieces together. Even the stories I’d heard before took on new meaning, because unsurprisingly, you process a story or memory much differently as an adult. I allowed other peoples sadness and I allowed my own because I knew it meant we loved him well, and that was in itself a comfort. A connection. All of it, including the dream, reminded me that he was still my dad and some part of him wasn’t gone, he or it was still there somewhere, maybe in that pocket between life and the dream.

I know that enduring the pain of losing him and reaching out to him again as though he could still hear me is what opened up our “line” where things like the dream happen. But truthfully the contact is not always so blatant.  Most of the time I have to look in the minute, the subtle, in things that are easy to dismiss. And I find him there. In heart shaped leaves. In a fly that won’t leave. In being so unconditionally loved and taken in by my family, including my stepdad, who my mom says my dad helped arrange. I find him in my nieces and seeing my brothers as fathers. In the morning. In rain. He loved the rain and was always reminding us that it was a sign of balance. Since his death he has continually shown up to special occasions with rain, if even a two minute shower. It’s raining now.

Getting to know my dad so many years after his death is a surprisingly positive and treasured experience for me. It’s been a privilege, really. Death is mostly talked about in hushed tones and at the risk of sounding morbid, which I’ve been accused of once or twice. But my dad has made death feel less serious, somehow.  When someone dies we label it as “bad” and when someone young dies we call it unfair. And while losing someone you love is one the hardest experiences in life, grief is not stagnant. Nothing stays the same, including the pain. And when you endure it, you also open the door for incredible things to happen. You’re brought intimately close to the lifecycle and there’s a sacredness there too. I don’t think it’s over when it’s over. I also don’t think people die and stick around to play with light switches. But I do think the line of communication is still there. It just involves reaching for it and experiencing someone using a new kind of language. It means being open to things you don’t completely understand.

I’ve always been aggressively curious and sometimes the weight of life and the worlds mysteries become too heavy and I get discouraged. Even mad sometimes. But getting to know my dad after his death and developing our relationship and talking with him while he sits on the edge of my bed…it superseded the comprehensible a while ago. It left me with far more questions. It’s made me an implicit part of something I don’t fully understand and for that I am so grateful. Because that’s most of life, anyway. We don’t actually know why we’re here or what happens to us when we’re not, but we go after it and love people and try to have a good time anyway. Knowing him has been a humble reminder that life and love and the infinite universe unfold despite our human comprehension. It reminds me that we don’t always need the answers in order to experience the fullness of life. Sometimes we get so caught up with thought, intent on answers and knowing that we limit ourselves from the phenomenal. Some things are beyond the realm of understanding, beyond words and category, and these are all but reasons not to embrace and cherish them as the miraculous treasures they turn out to be. I am looking forward to more. The rain has stopped now.

Happy Birthday to my Dad: THE ORIGINAL HIPSTER!

Happy Birthday to my Dad: THE ORIGINAL HIPSTER

This post is many weeks late. Chronic tardiness was my beloved dads only vice and he passed that on to me. So I’m sorry dad, but also I blame you. -Love, Rudy

Health, Happiness, Happy Birthday!

The Cusp

You know in those movies where the main character is down and out after shit hits the fan and they’re nearing rock bottom but then comes this pivotal moment, a complete momentum change where usually an offbeat sidekick character busts out the tough love and tells them only they can change the course of their lives and no one else can do it for them? Suddenly this head-boppy motivational song chimes in and so begins the montage where down-and-out becomes up and coming and bad choices are replaced with healthy ones followed by inspiring shots of her showing kindness to strangers and looking bright and happy and you know, you know, that everything is going to work out for her. Her life trajectory rockets into the stars where her potential is limitless.  And all the shit that hit the fan has settled and disappeared. It’s all going to be OK. It’s going to be good.

I find myself on the cusp of my own Hollywood game-change montage. In the movie of Mary, it’d start with me rolling out of bed… onto the floor.Then Monty enters, pulling me by my shirt collar into the kitchen, and scoots me a plate of pills with his nose across the floor. Then begins my momentum shift song, potentially this one by The Killers

…followed by shots of me lifting three-pound weights and flexing my “muscles” in the mirror. I’m drinking green frothy stuff and throwing away prescription bottle after bottle, high-fiving doctors and crossing off lifelong goals. Suddenly I’m the one waking Monty up to play, and I’m helping sick people and giving speeches in front of the president demanding  healthcare change for the chronically ill. Then the camera slowly fades in to me typing at the computer in the hazy blue of night; a question appears across the screen: Are you sure you want to change this URL? It asks. I click YES, only to reveal my new web address word by word: Zero.Pills.A.Day.Com BABY! (Scene) For some reason this hasn’t happened yet. So weird.

OK so yes this is more Hollywood than reality and there are a lot of flaws to the fantasy, like me “exercising” for one. And vitamins curing me, for two. But the other half contains actual hopes I have for my life. There are real changes that I can feel waking from dormancy, and ambitions I know I can achieve, all that’s required is that I jump off. Dig in. But when it comes time to leap, I feel hijacked by my own dumb brain. Maybe it’s more of a lump; a dense rock in my depths that thinks of a million other things to do besides the one thing that matters. Sometimes it’s a total jerk of a rock and suggests I’m incapable or unworthy, or that someone else could do it better. And the worst part is, I listen! I think yeah, I should definitely attack my nails and cuticles until they bleed instead of trying to change my life and others for the better and for forever. Smart, real smart.

When it comes to writing, I encounter the same consensus among writers, which is painfully simple: That writing every day is obnoxiously hard and often achingly lonely, but you just make yourself do it.   The writer Anne Patchett writes in The Getaway Car that the key to completing artistic endeavors is forgiveness. Before she begins, “I grieve for my own lack of talent and intelligence. …Forgiveness is key. I can’t write the book I want to write, but I can and will write the book I am capable of writing. Again and again I will forgive myself.” I’m working to keep this in mind, since so many words and pages I write on this computer end up in the trash bin. It’s hard to know whether I have a discerning eye for quality work, or if I just don’t trust myself enough. It’s beginning to feel like the constant editing is just another guise I’ve unconsciously created to keep me from the jump. Amy Poehler advised in her recent memoir that in order to write you have to symbolically remove your brain and put it in a drawer, then listen to it throw a tantrum until it wears itself out–meanwhile you get going on the real stuff. “The doing is the thing. Talking and worrying and thinking is not the thing. Writing the book is about writing the book.” See? Basically to achieve what you want, you just have to do it. Brilliant. When I’m not in denial and I’ve let go of excuses, I am well aware that the only thing in my way, holding me back, is me; and knowing that almost paralyzes me even more. But I also know that change starts with awareness, so I think it’s time I take out a hit on myself. At least on the part that’s so lost in thought it leads to stagnancy. I can’t believe the trouble thinking causes. Has Tolle taught me NOTHING!?

So many days I have no idea what I’m doing or where I’m going or what’s going to happen to me and it results in either laughter or becoming totally overwhelmed. Where I used to fear change in life, I guess when things were stable and I was happy, I’ll sense an aching fear that things won’t change. That I’ll live and die in my parents pool house, an unpaid blogger with 37 chronic conditions. I can’t grasp where my place is among the world. Furthermore I can’t decide whether our place is made or reserved. Do we discover it or carve it out all our own? I don’t know. I only know that most days I feel far from either. Other days I feel close to a major turn-around; like something huge is about to sweep me up and change all of this for the better. But by the next morning we’re back to the ordinary. I’m taking my pills and moaning and Monty is doing his best to get me out of bed. Often my life feels like a raft drifting in the ocean in no particular direction, and the wind in all its thoughtless surprise is steering the boat, not really taking me anywhere at all.

Guess we're going South. Cool.

Guess we’re going South. Cool.

Monty and I roam around this town I’ve historically hated more like tourists than anything else. No one knows us by name, besides the pharmacist of course. We spend a lot of time at this coffee shop with the angry barista where I’m writing from now.There are girls here wearing the same uniform I wore in high school. They look so young and cute in their plaid skirts and Mary Janes. They seem happy and untainted and I like the way they burst out laughing at hardly anything. I can’t remember looking that young, a sure sign I’m getting older. Since turning 30 last year, I wonder a lot whether I’m really growing up or just getting older every year. I am surprised to have found the first grey hairs on Monty’s snout this year and I feel like a mother watching her kid go to the prom.Where did the time go?! There’s all kinds of proof that time has moved forward and carried me with it.  And yet my life could easily fit the bill of a 17-year-old in many ways. Some days that’s exactly how it feels. As my friends are advancing their careers and getting married and having babies, I still bring my mom to doctors appointments and often shop at American Eagle.

I understand the circumstances of my life are different and I have to make peace with that every day. But I also want to make sure I’m growing through all of this and not just surviving it. I guess I thought there would be a day when I reached adulthood, as though it were some test you passed, like the BAR, and then were a certifiable adult. I definitely figured as a child that by age 30 I’d have it all figured it out. Of course, I was young and blissfully stupid then. I couldn’t know how obscenely larger and deeper reality would become. I feel like I know less than ever before. Every answer springs up ten more questions. I’m uncertain of mostly everything except for the aggressive love I have for my dog. In short I have no idea if I’m getting it right. And I can’t imagine the day when I’ll feel like an adult.

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Didn’t You Hear?!

However, I did notice something of note at Victoria’s Secret last week. It was a routine underwear buying trip and my spirits were high because there’s something weirdly exciting about getting new underwear. There I was at the 5 for $25 wrack; my go-to section for cute and economical briefs. But I found myself all disgruntled making frowney faces as I browsed the huge selection. They were all Lisa Frank colors or animal prints. But worse, there was writing across the butt. Things like “No Peaking” and “Shopping Burns Calories!” adorned their backsides. Dear. God. The colors were blinding and I felt out of my element. I then spotted the sophisticated 3 for $33 wrack out of the corner of my eye, where the colors are muted bronzy tones and the designs are laced in floral maturity. More expensive yes, but, as I held a silky pair in my hands, modest, pretty and free of TEXT on the ass, I felt at home. This is where I need to be. I bought my favorites and left smiling. So that counts for something. I think.

Forward!

Forward!

All these thoughts weigh heavy in my mind; stupidly, uselessly. But they can be thick and hard to control. So I take Monty to the river, where he is immediately in his element and I can catch my breath. Monty finds the largest stick in the vicinity and makes me throw it in the water again and again and again. His enthusiasm is contagious and I laugh out loud watching him put his whole head underwater to find the waterlogged sticks. Something about returning to the spot and seeing the river flow in the same direction it did last time we were here quiets my head. Watching Monty run full speed and splash clumsily reminds me to chill out. That life is supposed to be fun, and it only moves in one direction.( See above) Collapsing under the weight of those thoughts makes me feel dragged by the current instead of floating downstream. I don’t know exactly who I am, and maybe it’s something that grows and changes until the day you die. I only know that life and happiness aren’t somewhere over there, and I need to stop assigning them to a future I can’t know. Times will be hard and times will be easy, but there is peace to be found in all of it if I can just trust myself and forgive the experience. More than that there are dreams to be made! I just need to move out of my own way so I can finally jump off. Over the cliff–that’s where the magic happens. That’s where the Hollywood montage begins.

Health, Happiness, the Edge.

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.