happiness – FibroM.E.-Awesome

A Creative Pull

Published on December 10, 2025December 10, 2025 by Mary GelpiLeave a comment

Someone, I think it was Picasso, said that you cannot conjure up inspiration yourself, you can only hope that it finds you working. This says to me that in the arts, no matter what field you’re enjoying or pursuing, for money or no money, you have to be tuned in to a certain frequency so that when creative, organic ideas come buzzing around, they have a place to land. So many times I sit down to write one thing, and an entirely other subject reveals itself, at which point I start seeking out a whole different answer than the one I’d planned. Probably because the one I planned was trash, and this new idea found someone with a pen to paper, fingers to keys—then the magic happens.

I don’t call it “magic” in reference to the work produced—it actually feels like a magical process that a person can tune in to some vibrational frequency where pure, untethered creativity abounds and can attach and stick- if you stick with it. I often feel more confident about the new paths that reveal themselves while I’m onto something entirely different, because it’s almost something that can be viscerally felt, in the chest maybe: this idea, or shift.

Lately I’ve felt real “movememnt” inside of me; I have no idea what else to call it. It feels like this excess, internal energy, but it doesn’t have a way out. SO sometimes it’s angst, which is just absurd. It is however the reason I organized the spice cabinet recently, which was fine, but I know it wasn’t “it”. Duh. When I started this blog more than ten years ago, I was trying to make it easier, funnier, and with optimism to convey everyday life with ME/CFS. For whatever reason when I go to write now, sure I can do the same thing, but some other pull brings me out of it, maybe because I’ve beaten to death the quotidian life with illness topic. Maybe I let this blog be what it’s always been, and follow this magnetic pull, or push, to move onto some other creative endeavor.

It doesn’t mean I would stop writing—it’s my true life love and companion and I don’t mind sounding like a loser in saying so. But in so many ways it’s saved me from my very own stupid mind. I am best mentally when I’m creating, thinking and spitballing new ideas. And the thing is, there is still so much left to do, reveal, and chase in the mecfs realm, I don’t at all feel finished with the subject matter, trust me. But there is this internal draw to elevate this topic somehow. Maybe that means a new home to explore the ideas I’ve done here, a new means of getting it out to the masses, or even a few people, as long as it’s accessible by all. I only know I’ve really fallen off the wagon in this little corner that always felt like home, no matter who’s home I was living in! There’s been many, let me say.

The other confusing part is that there is SO much left unsaid, so many rocks to overturn and so much fight left to fight. I don’t at all want to turn my back on any of that. But why do I keep coming back here to write, only to turn to my notebooks where I write pen to paper and not a person can see? For one thing, I happen to like hand writing. There’s always the possibility of writing and taking a photo of it? But is that going backwards? I don’t know. Maybe I just fell off the horse for too long and it’s too late to get back on. I’m still writing to myself in my head all the time. But it ends up as scattered ideas in one of my three notebooks floating around the house and nothing is sequential or tied up with a bow and that, my friends, is one way to write, but I don’t think it’s any way to “be” a writer.

Why am I putting these self-conscious, disoriented thoughts out on the blog? Because my smaller self would have me write them in a notebook, where I’d likely reach no better resolution, and no one would know what’s happening on the other side of this thing. Is it me or do blogs feel outdated? I actually like hand-writing things because SO FEW THINGS are hand written anymore! I wrote a check the other day and felt straight out of the late 90’s. It was great! I’m a romantic, and nostalgic, what can I say. I’d love a real land line.

I’m not against technology although of course I fear how fast it moves and whether I can keep up in a viable, important way. I know I want to continue to reach sick people in an easy, honest way—I want to provide a departure from the horrors of a new doctor, the unsolicited advice, the online hold music at Walgreens, and anything that comes in an envelope from insurance and you can be sure it’s not good news. I think it’s important this community always be moving, be talking, making space and making noise for our very existence to be known. I have no intention of abandoning purpose there.

I’m just wondering if this blog should be left alone as a relic of its own time, and the next “creative spark”, whatever it may be, might find a spot in its place—a more modern place that is just as far-reaching.

Let me emphasize, this is not a good bye letter, not at all. Not that anyone is reading because I’ve abandoned this thing way too many times. If anything, it’s hello, because I thought I would get into a routine this summer and write write write all the way home. Maybe I will do that. But I have to mention this inexplicable tugging from I don’t know where, asking still to pursue these ideas, but possibly change up the form, escalate the medium. It doesn’t help that WordPress is completely updated and new and CONFUSING AF. And I’m tech savvy, for a girl and all. (Ha.Ha.)

Anyway this has always felt like a place to tell the truth, and if I didn’t have it, than to write things out and find it. It’s sort of amazing how writing can get you to answers. Mostly I think, it slows things down, and when we are still enough, we do get to our sought after answers. Or at least think to rephrase the initial question differently. No, no, for now this is just a hello and here’s what’s what letter, which of course, I don’t know yet what the what is. Why would anyone read this? My God.

For anyone who’s felt a little lost in their own life, aimless with where they thought their skill set might bring them, you know the constant hesitation and uncertainty that follows you like a shadow. I’m continuously letting myself down by letting this site get dusty and only once in a blue moon filling it in with what’s new. That’s not what a good blog does, and I like to do things well! If anything, I can do better. And that can easily start here, and maybe even stay here— who knows where it will end. Hopefully in a place that feels meaningful, enthusiastic, and mostly, like this blog, like home.

I posted a few of the drawings I’ve been working on when I decide to distract myself from writing instead. I’ll say, putting pen to paper for any intention feels good. If you’re in bed, I suggest this book, which teaches you in 6-10 steps how to draw hundreds of different flowers. (Shop around online, you should be able to get it for around $20) I’ve been enjoying it a lot. I also think it would make a great gift for anyone stuck in bed, stuck in life, whatever they are. There’s a real enjoyment that comes simply from drawing a flower, and I highly recommend it.

Well, until next time, which I hope is very soon….Signing off. Happy Holidays :)

Health, Happiness, Movement

What’s River Doing?

Published on August 14, 2025September 4, 2025 by Mary Gelpi1 Comment

OK, once again I’ve abandoned this platform for far too long and confided most of my writing to notebooks, again. But how could I resist this? A few weeks ago, I found this Victorian looking, hard-canvas notebook with The Very Tired Woman, A Series engraved on the front. As you’ll see, I had sufficient reason to spend the $14.99 on it in a novelty gift store.

How could I resist it? I felt like Ariel discovering treasure like the snarfblat and the dinglehopper. I had my eyes on some earrings, which immediately felt frivolous and useless after spotting this gem one shelf over. It sounds ridiculous, and it’s difficult to convey how much I love a new notebook, but I feel something akin to hope when I find one. I wonder what words will fill it, and if they’ll be happy or meaningful or amount to revealing some greater truth I’d otherwise never stumble into. Maybe I’m a little too romantic about the whole thing, but the feeling is so palpable, it’s almost paranormal. A future will unfold on these smooth white pages, and it’s as if the notebook already knows what words will fill them. I know, I know, it’s just paper for the love of Pete.

To top it off, I bought a Signo Uni-ball pen, micro 207—which writes with thick ink and a smooooth application. It’s therapeutic writing or drawing or doodling anything with it. The cherry on top.

In any case, if I die and people, or A person wonders where the writing from 2021 to 2025 is, it’s in a scarce series of notebooks in no particular order or categorized system so, let’s assume nothing too exciting has happened. UNTIL NOW.

What’s insane is that I started this off with a damn photo of a notebook, when SOMETHING TRULY AMAZING HAS HAPPENED.

We got a cat!!!! Kidding. Yes, it’s true. Finally, after three and a half very long years without a wagging tail or enthusiastic greeting every time you walk through the door, WE. GOT. A DOG! A puppy. And she’s, well, you guessed it: Perfect.

If you aren’t new here, you know that Monty, my black lab of 15 years, was an incredibly intrinsic part of my life. Intuitive, adaptive, forgiving, unconditionally loving, and a source of constant, tangible joy. Not even just for me. That dog made a lot of people smile and laugh, and I felt within the space of my heart some kind of warmth when other people pet him, threw him the ball, or my brother Nick sarcastically asked “Can you tell Monty to stop breathing on me?” He was such an incredible gift and teacher for me, even in losing him. I learned and grew through the grief. I felt immense joy and pain, but I didn’t suffer the way I feared I would when he was still alive. Mostly, I think, because of the wealth of gratitude I felt for ever having him at all, I could not be too far gone over his departure. He added so much life to my own, I’d do it all over and over again without question. I still think of him quite a lot, and I still smile at our memories and time together. If you’re not a dog person, this will all sound insane, and that’s OK. You’ll get there.

ANYWAY…

This is little River, at 8.5 weeks old. She’s a mini golden doodle, the only black girl of the litter, and I’ve no doubt she landed in exactly the right hands. Even though somehow when it came time to make the 4 hour drive to meet and purchase her, I actually worried. (Idiot) What if we don’t like her? What if she’s not as cute as the photos? (We’d only seen three.) I’ve never had a small dog, and I admit with a ginormous amount of shame that I used to be prejudiced against them! (Like I said, Idiot!) I’ve always been a black lab girl and drawn to large retriever types. I have no idea why I panicked really. I’ve only been wanting another dog for the last THREE AND A HALF YEARS.

Keegan and I packed a bowl for water, a towel, and nothing else. We woke up early and completely neglected to puppy proof the house at all. There were still ant traps on the floor when we returned! We mostly just…went for it. A long, anticipatory four hours later, we pulled up to a park, somewhere near Roosevelt, Utah and there she was, laying in the shade under a tree— a woman waving at us. This was it. I was in a daze. I’d wanted this for so long and now it was hard for my brain to wrap itself around the reality.

We were out of the car quick, me immediately picking her up like Simba from the Lion King. I couldn’t believe how small she was. Keegan asked questions to the breeder as I examined this new creature like a foreign object. I kept noticing how tiny her little needle teeth were when she yawned. I thought What if I step on this dog? Did that happen sometimes? But I thought better of it and didn’t ask. Keegan paid cash, and 10 minutes later, we were on our way home—a 3.8 pound puppy immediately asleep on the towel between the center console and Keegans leg. She slept the whole way home. That was that. Life would never be the same. And it isn’t. It’s better. The best.

A puppy is an amazing presence to be around. It’s such a fast and fleeting time, but full of happiness watching them grow and run into things. A puppies clumsiness must be one of my favorite things. Dogs in general have always supplied me with a certain sense of joy and love in a cove of my heart reserved for K9’s and K9’s only. I thought all the love I had for Monty might magically transfer onto another person, but no. I am a dog lover through and through, and an actual piece of me is made just for them. As soon as I held her, that small but immensely charged space began to slowly fill. There’s just nothing like it.

In case you’re wondering, no, we did not pay $3,500 for her, which appears to be the average going rate for golden doodles these days. It’s insane. I kept thinking “Monty was $100!” Times have changed, I’m older now, life flies by when you’re sick and surviving. We did get a hell of a deal on her. And I found her in the classifieds just like Monty. Now that I’ve gotten to know her, I’d pay a million bucks for her! If I HAD a million, I mean, or even a thousand at that. But she’s priceless of course. She is a hilarious puppy. Watches TV, approaches any dog despite their size or general vibe of hate towards her as though they’d be immediate friends. She does that head tilt thing a lot when hearing a noise she doesn’t recognize or you ask anything with an inquisitve tone. I eat it up. It’s hilarious and fun and wholesome. The whole energy of the house has changed.

There’s so much I want to say about the whole experience, but I think I’m well beyond the recommended word count and who cares what I think, puppy pictures are better! So enjoy some cuteness. For now it’s safe to say, I’m tired (she’s an early riser) and re-learning how to do life with a puppy, but I am so incredibly grateful for this new gift, and that nook in my heart reserved only for dogs has filled up again. It’s an incredible feeling. Until next time…

Health, Happiness, and Here’s What River’s Doing…

Forgiving February

Published on February 27, 2025July 30, 2025 by Mary Gelpi2 Comments

In the morning, usually just before nine, the sense of purpose with a small but visceral urgency can be felt. Take your medicine. Go to the bathroom. Start the coffee. On the coffee pot that hates me. Or at least I hate it. Now we’re talkin.

It has spit coffee grounds into my coffee every day for the last 1000 years. Other options exist, and I’ve had the time to pursue them, but never the spirit. I keep hoping it will change on its own without explanation. Then Keegan offers a simple, rational one. “You’re putting too many grounds in the filter contraption.” He must be right, because when he makes it— the coffee is smooth and without sludge on the bottom and sides of the mug. But it’s also too diluted for my taste. Can’t a girl have rich coffee?! Absurd it can’t handle my amount of grounds. Absolutely absurd.

I open the refrigerator to reach for cream, then remember we don’t have any. We have not had cream for three days. Another “problem” that is self-induced. Who would have bought more cream? I’m the only one who drinks it. That’s the absurd part Mary. Mind-made problems. Also, why do I care? I do not mind my coffee black. I’d take it sans the sandy grit, though! I actually left the mostly empty bottle of cream in the fridge! Facepalm.This is how off things are. February stains the whole morning. I take my spot on the couch, sip my cream-less, sludgy beverage. At least it’s hot. Drink it down. Deep breaths.

I stare out our windows, relieved by the vastness of this view. The massive size of the field, the strength and solidity of the Boockliff mountain range seemingly right behind it. The proximity of this ginormous rocky range lends me a grounded-ness I find hard to come by. I soak it in as much as I can. I already feel the stirrings about what will happen after I finish my second cup, but close my eyes and let it go. Come back.

I stare at the mountain again, remember that it was here far before me and will outlast my life and all its problems. Then my body and all its problems, by Centuries. Eons. Epochs. Eras? I forgot the order, but this thought is freeing to me because it evokes a stillness, a relief. It reminds me, in a comforting way, of mortality—that all of this will pass. Not just my restless state of mind and broken body, but this house and this current role I’m in and then, eventually, even the mountain too. I am temporary. In this life. Everything is temporary. Everything in the present is as it should be, because it cannot be otherwise. I remember the mentors words and try to quiet the mental chatter. It’s loud today, despite the specific breed of quiet that February brings on. Always hinting at things in the future, spring probably, but, you know, not warm enough to wear shorts now.

I kiss Keegan goodbye and can feel it in my bones that for a moment, each of us wishes we were the other. Not personally, but situationally. No doubt he’d like the idea of having a wide open day. No office, no clients, no endless list of tasks expanding across this week and the next and then into a black hole. And yet I wish I were him—going out into the world, even if that world is an office baring a heavy psychological load. He’s doing something, isn’t he? His time is meaningful, or at least, it seems to matter in a way that mine does not. If even on the toughest days it’s to be reduced to the crudest of meaning—a paycheck, say. That’s something! A pay stub—tangible, real, proof of contribution! What have I done, feed the birds?! Who cares?! I mean, besides the birds. But this type of thinking is all wrong. It will get me nowhere fast.

My perception that a paying job automatically qualifies as meaningful isn’t right. Certainly a job can provide that. But plenty of people have jobs, and what are they fantasizing about? Not having to work. Everything can contain purpose, or be totally devoid it, depending on how awake we are in the doing. Washing your hands. Spotting the cat hunting in the field. (A favorite) Folding laundry. Am I awake? Or is every task a means to an end? When you do anything and you’re truly awake, the meaning is implicit in the doing itself. Not the outcome. Not whether you’ve achieved something. How much wakefulness is brought to each moment, encounter, situation (problematic or not) determines how we live our life as a whole. Job or no job. Healthy or sick. Kids or no kids. Smooth waters/stormy seas etc. Are we conscious in the repetitive undertakings of life, or asleep at the wheel? Dreaming of some far off timeline that is not now? Not this reality? My mind loves to dabble in “What if’s” and “If only’s,” but all it does is untether me further from the life I was given. The one I’m living now.

Ready or not, February or not, here and now is where I am. The mind can tell me that February is awful—(it totally is!) But in truth what is it? The name of a set of twenty eight days, (is that all?!) an intrinsic piece of a Seasonal whole that I’ve decided is wrecking me. That’s just a perspective, though, among millions the mind has. So I can let it go, send it down the river of useless thoughts and opinions. Tolle describes it like this: You wake up, open the curtains, and it’s grey and raining out. Everything is covered in grey and you think “what a dismal morning this is” etc etc. Already you feel it’s not going to be a good day. You’ll get wet walking to your car. And what has ‘actually’ happened? Moisture is falling from the sky. That’s it.

The inner me knows whether it’s sunny or raining, February or July, the stillness inside me does not change. It does not react to atmospheric pressure. In fact, it doesn’t react at all. It sits, undisturbed, always ready to be accessed. If we can only be still and silent long enough to hear and feel and animate it. Tolle also says that if your thoughts are dominating or consuming you, All it takes is one conscious breath. You can’t take a conscious breath and be thinking at the same time. Accessing this inner part is finding wholeness. Connectedness. It’s also where problem solving and creativity and the alive sense of being reside. More permanent than even that Rocky Mountain. And far more steadfast than a February that feels like it will truly never end. (But seriously, will it?!)

February always seems to suspend my mind in something resembling stagnancy. Gross. It’s like a perpetual 3 o’clock in the afternoon—too late to start anything and too early to pack it all up. From where this mental hindrance emerges I don’t really know. It was always easy enough to blame it on February. (Seriously, the worst!) As though this month were a person, stopping me from living life more meaningfully and surrendered. A restlessness all my own I suppose. One that I can either turn in to something good, or let dictate erratic moods for an entire month straight!

The truth is simple. I am a very lucky person and I have to remember this. Inside I am more grateful than I’ve ever been in my life. I’ve been given so much and such incredible people. They, and the challenges I’ve moved through, even just the restless days where it felt like nothing matter, have all brought me to now. If I’m alive now, I am supposed to be here. I can do small things with great purpose and great love, and that can be enough, too.

All of this reminds me of Mary Oliver’s poem, “The Summer Day.” You’ll likely recognize the last two lines, but enjoy the rest. I only came across the whole thing recently, and I think it hits right at what this mess of words are pointing to.

Health, Happiness, And Not That It Matters, But There’s Only Two More Days :)

The Belly of the Beast: Chronicle of a Crash

Published on July 6, 2020April 20, 2023 by Mary Gelpi9 Comments

My aunt is dancing in circles around me. She’s cleaning and organizing any and everything around the house. She just brought oatmeal and medicine to me in bed for the ulcer that’s upset again. Now she’s painting the dark spots on the baseboard in the bathroom, and she’s humming while she does it. She’s like a little home-improvement fairy. Last week, it was my oldest brother Doug in similar shoes.

He talks and makes jokes while cleaning the kitchen— wiping down the counter the way a good bartender would. He makes coffee, cooks breakfast, fixes the broken technology around here, then asks what’s for lunch an hour after breakfast. My mom and I groan. Neither of us think much about food, nor about life past the next five minutes. He volunteers to run out for groceries and pick up prescriptions. When he returns, he’s still armed with energy to cook the food he just expended himself on buying. Incredible.

Each of them work so fast and seamlessly between small jobs. I just watch and listen to them in total awe. I am pathetically stagnant, in one of the worst crashes I can remember. I feel like the still, unmoving eye of a hurricane, and people like Doug and Amy are the winds and rain and sheer forces of life blowing up all around me.

Meanwhile, I’m reeeeally helpful…

Hi would like yall like help doing the dishes? Just kidding I can’t stand hehe.

Their ability to complete tasks, one after the other, without having to stop in-between astounds me. Simple things requiring any iota of strength—running down the stairs for instance, which my brother does without a second thought—appear miraculous. I might as well be watching Doug walk on water.

Those stairs. They nearly haunt me. I crawl up them in the morning on all fours. I have to catch my breath at the top. I have to catch my breath all the time.

I’ve never had shortness of breath this severe or last this long. We can’t figure it out. My o2 level is typically fine, though it drops in the 80’s when I’m upright. I cannot sustain a normal blood pressure. Every time we take it it’s somewhere around 80/50. My mom unwraps the velcro cuff and says Well, that would explain you feeling half dead.

So often these last few months, I hardly feel like a person. I’m more like a spirit dragging around a clunky, metal, ginormous body that doesn’t work. It won’t go. It’s broke. But my mind is alive and wild as ever. I’m living mostly within the confines of that mind. The body cannot carry out what the soul craves, so nearly everything experiential is internal.

Anything requiring an outer effort is reduced to absolute necessity. Bathroom and back. Feed dog and lay down. Fill water glass, lean against the sink waiting, trudge back to bed. There is no room for recreation.

I spend 95% of my time supine. Never stand when I can sit. Never sit when I can lay. That’s basically always the crash mantra, but it’s so especially true now. I find myself craving soft surfaces and soft clothes. I have no idea why I love looking at dresses and runway shows online. I can’t imagine wearing them–No, I can only imagine wearing them. But I actually never would. Fantasy I guess. Still gives a dopamine kick.

I hear my aunts phone ring and she answers it, while working! My brother does this too—which is again, unbelievable. How can they talk and listen and continue their task? I forget about socializing because I’m so busy trying to, you know, breathe. I forget that we need it; we’re humans and we crave connection. I need it too, and yet the sound of my phone ringing almost makes me angry. Why? Who would call me? I’m a moron!

Mostly I’m just irritable; exhausted from continuously wearing out so easily. I have nothing left to give on the phone. I am a pretty clutch texter, though. I feel a lot like this kitten I saw on Instagram…>>>>

Only the people who I love and love me would call. (Pharmacies too, and a few scammers, too.) But talking takes energy. Even laughing takes it. Sometimes I take the plunge and pay the price. It’s worth it. For the sake of my soul it’s worth it. But right now, if my phone rings, I silence it and roll over.

This is how and why chronically sick life becomes so isolating. Relationships take maintenance. It’s why I’m so often a bad friend, sibling, aunt etc. etc. in terms of ‘staying in touch.’ And yet…

I’m lucky. I have understanding friends. An extremely supportive family. Most have learned my limits, or at least witnessed them and know what to expect. Even if they don’t understand it, the closest ones accept it and stick with me. I’m lucky as anything for all of them.

I keep promising Monty a walk, but we never go. Just to the backyard where I clumsily throw a tennis ball and he’s as excited and focused as the first time he learned he could drop a ball in front of me, whereupon I would throw it, and repeat this action to infinity. His cheerful, eagerness for every day of his life brings me incredible joy.

He eases my burden so often, in a way only dogs can. Just watching his tail wag and touching his velvet ears lightens me. Softens things. He follows me everywhere, even the bathroom, which I read is an instinctual protective measure, and now it kind of makes my heart melt.

I notice the healthy people never calculate cost. Physical cost. It never seems to be whether they have the energy to do something, only if they have the time. We all pay with different currencies. I cannot remember it. I cannot remember what that ‘energy-on-tap’ feels like anymore. I only know I had it once.

I dream all the time about the day it comes back. I still believe I will have a life one day where a lack of health won’t be so consuming, so dominant. For now I feel like I’m standing in the same spot in the sand, the ocean of sickness coming in and out with the tide. The water crashes over me in waves again and again. Sometimes it relents, I will feel OK, (an extremely relative term) attend a family gathering. I appear ‘well enough’—healthy enough. Other times the waves wash over me and I nearly drown in them. I can barely see.

I’m in that place now. I broke my own record for how long I could go without a shower/bath. The answer is way too long, mkay?! But this crash has been so powerful. So persistent. A shower just feels like a joke of an idea. My aunt keeps offering to wash my hair in the sink, but even that idea exhausts me, and I’d still feel dirty anyway. Poor Amy, I must really look rough.

Sometimes it all becomes too heavy. Last week I lost it and the tears came out streaming hard and fast. I could barely speak—-couldn’t convey what was wrong. But because my mom is who she is, I didn’t have to. She patted my disgusting, unclean hair, not minding what an insane mess I was. “It’s OK Mary, just let yourself cry.” Her voice was shaky too and I thought how hard this must be to have to watch her kid like this and I hate that aspect so much. Love like hers is strong and remarkable and brings me back on solid ground.

It’s easy to forget she has this disease too. And so does my sister. Watching her children suffer is worse than anything, including her own physical suffering, she says. I believe her. I also believe I’ll be well again. I’ll at least be better than the human disaster I am now. One day, the roles will finally reverse. I’ll be healthy and able to care for her. Take her blood pressure. I joke that as reimbursement for their long-term care, I’ll change her and Marcs diapers when they’re absurdly old. It makes all of us laugh, but I really do mean it.

Even in a crash as devastating as this one, I have to believe I will come out of it, despite not remembering what I felt like before. Once I’m better, I won’t remember how bad this feels. It’s such a strange phenomenon. I can’t wait to not remember.

1-3 — Note to self, this blows really hard.

Things will change, they always do. This will pass and things will improve. I don’t know how it will happen, though a few ideas float to the top each time. Must keep writing. Must keep trying. Must keep believing.

For now, the challenge remains the same: finding the balance between surrendering to what my body needs, while pushing back on the things that I can change. That need changing. I won’t give up on pursuing health and trying to accept that my definition of ‘well’ will be different from others. I’ll contunue to try and recognize joy, meaning, and gratitude among the muck. Cry when I need to cry, but try to laugh more.

I’ll continue to pursue a version of myself that I can be proud of, even when I’m swallowed whole by this miserable beast. That part is the hardest, but most worthwhile.

I won’t give up on fighting for the NIH to see us.

My eyes are heavy again and my head is clouding up. Time to drift away to some tinkered version of here. I can hear my aunt in the kitchen, sweeping, chatting. My brother shuffling up and down both flights of stairs. My moms hand stroking my hair. Thank God for help. It will be OK. Keep trying. Keep going.

Health, Happiness, The Belly

***PSA!!!***

I am happy to report that after three extremely hard, very sick months, I have finally emerged out of the rock-bottom part of this crash. I can breathe again! I’m on two feet, thanks to prescription, altitude, and stress adjustments. I was finally cognitively capable of pulling some writing from the last few months together. Anyway, if you’re going through hell right now, in whatever capacity, I feel you. Keep going. It gets better.

2020 Hear Me Roar! Or Meow, Just Depending on Things

Published on January 3, 2020January 3, 2020 by Mary Gelpi1 Comment

Even if the Holidays are officially over, (although Mardi Gras is just around the corner) there’s nothing like the mood set by a lit Christmas tree in a dim living room. Monty is sleeping beneath it, his long breaths almost in sync with the fade on-off feature of the lights–it all sets quite a scene. Like a Norman Rockwell painting in here.

There’s something about quiet nights like this—just the dog, me, and the glow of the tree, that I feel I’ll remember for a long time to come. Maybe it’s this hidden fear that it’s all about to change, which is true, it is. You always end up missing the ordinary things.

I’m trying to ignore this headache and concentrate on the smell of the fern. It’s not really working, the headache tends to win out a lot. But I’m enjoying the atmosphere nonetheless. This has been quite the Giving Tree. I only watered it once!

I say it every year, I know, but the Holidays still thrill me because people do nice things for no other reason than “Hey, it’s Christmas” and it’s always been one of my favorite things, ever. I’d been attempting to get a Christmas tree since Thanksgiving weekend but my health wouldn’t cooperate. Two weeks before Christmas my stepdad Marc showed up out of the blue at 2 pm, knocked and swung open the door jokingly singing some Christmas tune. He had a 10 footer in his truck just for me. What a gesture!

I named her Carol and we put her in the corner and she has been a real treasure. It was all the gift I needed really. Kidding—it’s about having family and friends to share Carol with, and having them here was great. Of course, it came at great risk.

A week before my brother and his family of five in tow were to arrive, their oldest came down with a stomach bug. Then the youngest. And on and on. One by one, each day, another would vomit. Another bit the dust. My mom and I would dart our eyes back and forth with news of the next man down, calculating their arrival date in our heads. Then on Friday, my brother Nick finally succumbed to it–they were arriving Monday. The ominous question no one wanted to entertain entered the conversation. Was one dang Holiday worth the rest of us barfing all night? Of course it was! It’s Christmas for Gosh sake!

Who could do without these cotton headed ninny muggins?

We justified it. We convinced ourselves. No, they wouldn’t be contagious by Monday. Couldn’t be. We’d wash our hands. We’d drink hand sanitizer and bathe in vinegar. Many people convinced me with enough handwashing we’d be in the clear. My mom was more skeptical, but eventually she said a bit defeated What can ya do? If we get it, we get it.

Well, at 1:30 am on December 28th, we got it. Or, I got it. Snuck right up on me. I puked so much tinsel I thought I’d puke again. And I did! It wasn’t tinsel, it was kale, I just thought tinsel painted a more festive image. I cursed Christmas, just for a moment, but then thought eh, what the heck. They’re worth it.

Luckily the same fam who gave it to me, took care of me just as well. I thought Jeesh, being sick is so much easier with people around! That thing knocked me out. Since everyone left three days ago, I’ve spent every day in bed with a weighted exhaustion and deep ache in my bones. BUT, today was the first day I woke up migraine free and my old lady bones had calmed down at least a little. Progress!

I was thinking how it’s difficult to be in a position of needing help. Chronically that is. A stomach bug leaves, but this chronic illness stuff, it will ware you and your loved ones out. The idea of being a burden is a constant fear I fight. It’s so reassuring to know your own autonomy and be able to rely on yourself. Losing those capabilities through illness is hard to know what to do with. Asking for and accepting help was more difficult than I expected, especially when you were once so independent. One of the tougher lessons in all of this, I think. But, it becomes easier when you stop resisting it. What you resist, persists, as they say.

Once you start to release the idea of your self that doesn’t quite exist (healthy, reliable), you ease into the reality of being just the human you are. (A wasteland) The best way to handle this is with humility and gratitude. No one likes to help an ungrateful pain in the ass. But someone who is aware of what they require, can reach out for it with grace and acknowledge those who help them with humbleness, is more likely to receive kindness. People are more apt to tolerate and even enjoy your pain in the assness. That’s where being sick surprises me. It can bring out incredible things and open the door for doing good– not just in yourself but in others too.

Speaking of doing good, I wanted to end on a note about advocacy. Namely, what an absent advocate I’ve been this last year. I was sort of on a role, going to D.C., circulating the petition, begging for signatures like a desperate vacuum-cleaner salesmen. Do those still exist? Sending thousands of pages of names and stories to the NIH. Then what?

Besides spending the first three quarters of 2019 in the physical state of a trashcan lit on fire, it was more than a lack of physical health. I lost my footing. You have to find a very particular headspace with ME advocacy, and I sort of lost myself. I became discouraged at the federal responses, the intolerably slow pace of things, and increasingly saddened hearing the repeated stories of such insanely debilitated people being dismissed, doubted, and deserted by the medical world. Shamefully I admit, it was just easier not to fight. At times I thought What am I doing? Is this going to achieve anything?

You can’t unring the bell, is the thing. Once you see how bad it is, how desperate this situation is, it feels negligent not to fight to try and change it. There are no guarantees in advocacy. But like always, I know inside it’s better to try. Maybe it won’t make a difference today, but our collective efforts are going to change things eventually. All a matter of when.

In the meantime, the fight is infuriating. You have to remain hopeful despite receiving responses from the NIH, like the one below, that tried very hard to list all the ways they were getting serious about MECFS, and even included a Press Release from 2015 to prove they meant business! Effectively their letter said this: We. Still. Don’t. Get It! Orrr, maybe they do get it, in which case their letter said this: We. Still. Don’t. Care! But thanks for writing us, and sending that cute box, haha! What a crock. You can (click) and read the letter below, or someone can make a fart sound and that would effectively be the same thing.

This letter can suck it.

Best be summed up

With a fart sound.

Their response wasn’t infuriating because it didn’t include a promise to immediately allocate $100 million bucks. (Although, that really would help us out GUYS) It was immensely tonedeaf but most of all it just didn’t hold true. I read the words over and over, grasping at vague promises and past “efforts” trying to convince me that they really do care. OK, great. But you can’t just take their word for it, so when you do your due diligence and learn things like NIH funding dropped 25% since 2017 for MECFS research— it’s easy to think OH What in the name of SAM HILL HELL ARE YALL THINKING? Ahem, excuse me. Like I was saying, proper headspace.

So, you get it. It’s tough. But the work is too important. I’ve seen what this disease has done to countless strangers, I’ve lived what it’s done to me, and I continue to watch what it’s done to my mom and most recently my sister. I just wanted to remind myself here at the beginning of the new year, and the twelve or so readers, that this fight is desperately still in need of all our help. It’s absolutely clear the NIH won’t act without a lot of outside pressure and heat and noise; I believe we can bring it.

I’ll do my best to stick with it and continue to try and be creative and positive throughout this fight. As always, I’m open to ideas! The petition is still live and well, but I’ll work on new ideas of how best to work with it.

Being shown and gifted so much kindness in my life, I think the best possible way I can pay it forward is to remain dedicated to this campaign, regardless of how little I think it may matter on one day or hopeless I may momentarily feel. At heart I believe the change we seek is possible. And Monty does too.

Health, Happiness, and the Roaring 2020’s

The In-Between

Published on December 9, 2019 by Mary Gelpi2 Comments

I’ve been writing at my typewriter way too long. Something about that bright red device with such mechanical three-dimensional features allures me to the window. It also helps that it produces something tangible at the end. Something I can read and underline and scratch out afterward. But it’s made me abandon my place over here! I’m pretending you care. At any rate…

It’s the mooooooost wonderful tiiiiiiiiime of the yeeeeeeear. I sing that around my house when I get a burst of energy. It makes Monty all feisty.

Christmas, finally! No wait, this year flew by. I think. Yeah, it did. It’s funny how most conversations are like “Something about time.” “Yeah, and something else about time!” “Not to mention the weather…” “Oh yeah, and the WEATHER!” Weather and Time, making conversations since the beginning of…well you KNOW!

Today my friend Matt and I are going to get a Christmas tree. And Monty too, if we can fit him in the trunk. Whoa, I meant to write truck. He’d never fit in the trunk. Anyway it’s really not a great Christmas-getting-tree day. It’s warm and soupy outside.

I should try and embrace it. I don’t think Colorado sees humid, soupy days in December.

Meantime I’m prepping myself for Christmas week. I so forward to this week where most the family reunites and we cram as much doing and going and seeing and visiting into one week and make a bunch of magical memories. Then at the end of the week everyone goes home and back to life as usual and I’m left with a body that feels like it’s been bulldozed for the next three months, at least. Sometimes I fear I’m becoming a human Kathy cartoon.

The point is, I know there’s a better middle ground where I can plant my feet. The problem is it involves more saying no. Saying no means missing out, and missing out is really depressing when your family is finally in town but an arms length away. I’m the youngest, so I especially never want to miss out. It comes with the territory.

I think when you’re sick this long you forget what this need to Go and see and do and lunch and dinner and friends! and the zoo! and the park! what’s next?Let’s go!What’s next?Let’s go!– feels like. Wait no, that’s wrong. You do remember the feeling, psychologically–you still have it in fact. You just can’t deliver on it and you haven’t in a long time. That pace of life becomes slowly unfamiliar. And unsustainable. Suddenly you’re surrounded by people who wake up in the morning and put on their pants and go and go and go, and it’s a stunning reminder of what physical health allows. But you just can’t go at that pace, at least not very long. And not without paying.

As a person so physically limited, I live in a fantasy-land where everyone meets up and says “Hey do yall want to just hang around here and play cards and watch movies and throw the ball for that dog who we all love and adore so much and also discuss and agree about the direction the world is taking? Sounds good, I’ll get the hot chocolate going. Elf starts in ten.”

NEVER

GETS

OLD

A fantasy, of course. Healthy people want to go and see and do, and they should be allowed to do as they want and not feel like they’re leaving a soldier behind. But it’s just tough when you have sick family members and big groups of people. Each person needs what they need, and we have to learn to compromise where we can. The truth is, well, it sucks. I want to be able to do all of it. But then nobody, really, can do it all.

Ah wonderful, now it’s raining. Real great Louisiana! Wait, last Louisiana Christmas for a good while. Soak it in. Soak all that soupiness in. One moment, I need to turn the AC on.

It always helps me to break up the time I have with my family around Christmas into really small pieces. I try to recognize the specialness of moments (within the moment) and almost freeze-dry them in my head. Take a detailed note of everything and put them in my pocket for later. I have a few of those “nuggets” in my mind from the past that I’ll always hold onto. But it’s not easy. I’m constantly fighting between what the heart wants and what my crap body can handle.

Sometimes we concentrate too hard on making big plans and doing big things, one thing followed by the next and the next. We could probably stand to slow down and smell the poinsettias now and then. But too, it’s nice remembering some of the best parts are in the prepping of the big thing, or the resting afterward, or story time before bed. All the little in-betweens.

Since I can’t keep up with it all, as my body proves to me year after year, I will try and be highly awake for all the smaller, do-nothing moments. Take little snapshots along the way of enjoyable times, even the quick ones, give them a name and collect them like pebbles. It helps to write, of course. Then when your memory fails you, you can read a list of the happy moments you had. It’s about the little things, so they say, so it helps to capture and really treasure those as much as you do the big ones. You don’t always have to make it to the zoo to make a memory that lasts.

Then again, going to the zoo is really freaking fun.

What do I know? I’m still working this out. But it’s on my to-do list this year: Keep it simple. Let people do what they want. Enjoy the time I have with whoever’s around me. It’s obvious and yet, none of these things are done easily in practice. I challenge us all.

You know last year it was my goal to write shorter blogs but more frequently? I totally failed! That’s the nice thing about years, a *new year* always shows up. But usually I’m too weak to move by then. KATHY CARTOON! Ack!

Health, Happiness, Keeping up

Woah Is Me

Published on November 12, 2019 by Mary Gelpi4 Comments

The setting is a little funny right now. I’m outside on the porch swing, it’s only 6:30 but very dark. It’s warm and damp, on the cusp of a light drizzle. It might as well be July. Monty insisted we come out of course, without a care that it’s almost completely dark or mosquitoey or that it’s now in fact raining. The dog is such a happy distraction. My head is pounding.

I’m tired of even saying that or thinking about it, but it’s hard to escape. A change of setting always helps, at least psychologically. But Monty helps the most. He cracks me up. He’s playing fetch with an old sock right now. Really. The dog will retrieve anything.

I remember once when he was a puppy, we lived in these stupid college apartments, and we played fetch with a rock in a concrete parking lot. I remember thinking My God, the idea of this is so depressing. And yet there was Monty, flopping and running back and forth, proudly prancing after he’d pick up the golf-ball sized rock and spit it out to bounce back to me. Monty turned 12 last month. 12! He doesn’t look or act that age at all. You should see him fetching this sock. We might as well be back in that barren cement lot.

Time to go in Monty. Time to ice my head and wait for things to calm down up there. It’s like a storm is brewing in my brain, just like the real one setting in outside. It will rain tonight and be freezing tomorrow. All the small talk will change from how miserably hot it is to how insanely cold.

***

It happened just like they said. Winter showed up overnight. Monty doesn’t seem to mind at all. My head was pounding when I woke up and I didn’t want to move.

I’m not in great form today. This happens sometimes. I’m already missing the scenery here. What I see out each window. I’m already missing Monty. I know it’s stupid to think that way and I try not to entertain those types of thoughts for long. But it’s hard to pretend otherwise. I’m just afraid of the changes I know are coming. I am very afraid of moving.

I’ve been in a sort of denial about it, because I haven’t had reason to face it head on yet. And when you’re in physical pain, you don’t really have the capacity to think so far ahead anyway. That can be a good thing. But the times when the reality of it does seep in, I feel so overwhelmed I can hardly move. They say pain stems from spending too much time in the past or too much in the future. It makes perfect sense, but alas, I am imperfect. I already know how certain things will hurt. I’ve been through them before.

We haven’t even sold the house(s) yet, but I know we soon will. For what could’ve been an easily “tragic situation”, this all turned out OK. No, I never planned on living in my parents pool house and wouldn’t have chosen it. And yet it turned out to be ideal, given the reality. Help is 15 steps away, as is my independence and autonomy. Monty and I have really grown up here, a second childhood of sorts. Adjusting to a new normal—a lack of health— has meant learning to be soft where I used to be stubborn. You just don’t have the energy to fight against things, to be so particular. And the relief comes in realizing 95% of the things you fought and fussed over were useless—petty or temporary or out of your control anyway. It’s been a hard but good and practical lesson. It can only go two ways when you lose physical reliability.

Monty is the master adjuster. All 12 years he’s wagged his tail and followed wherever we were to go. Whatever he does he plunges into with openness and playfulness and I need to lean in to this kind of thinking. But fear takes me over at the idea of upcoming change. It’s not just one thing, like the fear of what will be. What could be. It’s all this I’ll have to leave behind, too.

Even the painful parts. This house is so filled with receipts of life and pain and revelation and hope. It’s strange that even leaving something painful behind is painful itself.

When I think of the fact that we are moving back into the house I grew up in, in the town I grew up in and hated at the time, I feel sick. But that’s putting it all pretty crudely, isn’t it? As I’ve learned over and over, it’s crucial that we write the story and not allow a fleeting feeling like fear to take over the script. It’s all in how you frame things, I know it. And of course I can do a better job than reduced, negative summaries like that. It’s almost tragically hilarious, which seems to be the theme of my life. I’m 35 and moving North into my parents basement! Who could write this stuff?

I know, I know. I am lucky for so many reasons. I could always stay behind and see what living alone without any help from my parents would be like—then I’d see! Maybe I wouldn’t complain about moving once I saw how terribly worse this could all be. I’m fortunate to belong to a family who cares. To have family/friends who care one way or another. But I think that’s where the deeper sadness stems from here; The lack of choice that naturally exists from a lack of health.

You really can’t complain when so many people are helping you. And as backwards as it is, sometimes you resent the help. Resent needing the help. You’re so grateful it makes you cry, and yet you’re tired of saying thank you. This is a feeling, not the truth, and I know the difference. Gratitude has saved me over and over. Maybe I shouldn’t give these feelings a voice. But they’re there, like a lump in my throat, and I thought maybe writing out the fear would help disempower it a bit.

I fantasize all the time about being on the other end of this. Of being the healthy person offering the sick person (or anyone) my home, my energy, my ability, my ear. I’ve played out multiple versions of a possible future. I am wearing coherent, trendy outfits in all of them, and my house is very clean. But who knows what the real one holds. Maybe I end up a success in dirty PJ’S?

I don’t mean to be whiny, I’m not so sure why this premature nostalgia and angst is hitting me hard today. I guess life catches up with all of us now and then. It’s OK to cry about it, although it makes my stupid pounding head worse. I should take it as a sign I’ve cried enough. I called Monty over and he yawned. Real nice Monty!

Sniff sniff, wipe wipe.

Tomorrow I see the neurosurgeon. We’re trying to find out if I have CCI, Stenosis, or other structural issues in my cranio-cervical junction. I have no idea what’s wrong, only that I probably shouldn’t be in so much pain all the time or have to take migraine medicine as much as I do and the idea that having an ice pack glued to my head has become normal is just absurd. We have entered the absurd, people! So, maybe we’ll find out something more tomorrow. I have zero expectations, as I tell most doctors I feel like I’m dying and they then tell me that my lab work reveals I’m the specimen of health! Perfect, if only I felt that way.

I don’t want to get my hopes up but then, why not let her fly? If nothing comes from tomorrow I’ll not really have lost anything. Just another box checked. In it’s own way, that’s progress. I think. I don’t know, my head is throbbing and my thinking is starting to fragment again.

Maybe tomorrow will be the start of change that I’ve been fearing but will actually mark the start of something new and great. We’re crazy to ever think we know how it will all unfold. I only know that hot or cold, New Orleans or Colorado, Monty is happy to be alive and play–with a sock or a rock. And that kind of adaptability is something I strive for. Oh Monty, will you ever know how insane and complete my love for you is? I hope.

Wish me luck.

Health, Happiness, I’m Not Crying You’re Crying

Turning It Off

Published on October 29, 2019 by Mary Gelpi

Summer Part 1: The Bill Always Comes

Published on August 5, 2019 by Mary Gelpi4 Comments

**The Summer of The Winter of Our Discontent**

There’s this key moment in Sudoku, when you find a clutch number that gives way to the others and begin to just fall into place like a waterfall. Much like the card you play in solitaire where you know you’re about to crack it. I had just written in a 6 I’d been trying to find for way too long. So began the waterfall, and I filled in the other boxes proudly– possibly smugly because this puzzle felt like it was out to trick me personally and now I had it in my hands! Until I didn’t, and in slow motion realized I had two number 7’s in the bottom row, and I just wanted to hit myself.

I tried to work backwards to fix it, but it was irreparably blown. I blew it. So, there went the last two weeks.

Of course, I’ve been up to other things. It’d be funny if after a month break all I had to show for it was a failed puzzle. Can’t all be winners.

For starters, summer reading. In July I was booklets after finishing Killing Commendatore, and sad I didn’t have more Murikami to lose myself in. Finally I scanned my own bookshelf for unread potential treasures and picked up Steinbeck’s The Winter of Our Discontent, which doesn’t sound like much of an apropos Summer read, but it’s just that. It’d sat idle on my shelf for years, even though that white house on the cover had caught my eye a thousand times. I had no idea the brilliance I was missing! It’s like suddenly realizing an old painting in your closet is worth some absurd amount of money. Once I dove in I didn’t want out, which surprised me when it shouldn’t have. It’s a classic, what did I expect?

The book was written in 1961, and given the passage of time I expected a natural disconnect. I’ve been so wrapped up in modern fiction– for too long probably. Yet somehow the America and the People and Assumed Human Decency that Steinbeck depicted 60 years ago were all completely recognizable today. You wouldn’t have to drive long before finding a sister town to “New Baytown”or look very hard before confronting modern replicas of his primary characters. Ultimately he tapped into the problems, desires, personal demons and moral choices most all of us face at some point– it’s just astounding to me that Steinbeck unearthed such deep, quiet struggles and could discern which ones were engrained in us and would stand the test of time.

Maybe that’s a litmus test for what makes a book a classic; if the suppositions and ideas can weather the decades and remain solidly true, unbothered by time, then you’ve got yourself a winner. I guess that’s pretty obvious, but it felt remarkable to come across.

The book reads a lot like a memoir of protagonist Ethan Crawley, who is so likable, in the first place, it’s hard to put down. I felt a relief knowing there was someone else who felt these ways –about money and politics and social hierarchies and expectations. He makes a joke out of probably 85% of his replies, and rarely does anyone get it, or choose to acknowledge it with a laugh anyway. That felt… familiar.

I feel similarly when I watch SNL sketches that crack me up. It’s not in the scene itself, but in the imagining of the writers who wrote the sketch, and knowing that real people out there recognized absurdity the way that I do. It’s easy not to feel seen in the world, but knowing other people see things the same way you do, even perfect strangers, feels like the twin brother to feeling understood. One scene in the book hammered this feeling in…

Crawley and his wife have been invited to another couples house to discuss “business”, i.e. money, but they have to go through the obligatory song and dance first. That means a formal serving of tea and then petty small talk. Everyone sipped tea and each delivered some anecdote on the subject of tea. He’s bored to tears. When it became Ethan’s turn to chime in, he brought up Danny, the town drunk, and a terrible nightmare he’d had about him. I laughed as he described feeling his wife’s quiet anger that he didn’t keep up the supposedly pleasant tea talk, and now everyone had to comment about a despairing subject. I wonder how many pleasant bouts of small talk I’ve Debbie Downer’ed with an some morbid comment that I found funny? Probably too many. Anyway, it’s a perfect scene.

A few of my favorite passages:

“So many old and lovely things are stored in the worlds attic, because we don’t want them around us and we don’t dare throw them out.”

I don’t suppose there’s a man in the world who doesn’t love to give advice.”

(Ethan)”Is Marullo part of the group?”

(Wealthy friend) “Certainly not. He goes his own way with his own crowd.” (The Italians. Marullo is an immigrant)

(Ethan)“They do pretty well, don’t they?”

(Friend) “Better than I think is healthy. I don’t like to see these foreigners creeping in.”

Sounds familiar eh?

“There is no such thing as just enough money. Only two measures: No Money and Not Enough Money.”

“No one wants advice–only corroboration.”

“I always put it down to fact that a wife never likes her husband’s boss or his secretary.” “All men are moral. Only their neighbors are not.” “Not only the brave get killed, but the brave have a better chance at it.” “For the most part people are not curious, except about themselves.”

I must have underlined half the book.

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Next I read Hemingways The Sun Also Rises, another of the greats that’d been collecting dust not far from Steinbeck. When finishing it I wondered why I haven’t read more of the classics, because this was a damn great book too. There’s no good reason I don’t have more of them under my belt, except that I didn’t take enough literature classes in college I guess, and I hardly know what the real classics are. So, I’ve begun a list. Who cares. Anyway I won’t go so far into this one. As tribute to Hemingway and his distinguished, succinct style I’ll say this: The book is rather great and you should read it. You’ll have a swell time.

Especially if you love Paris, Spain, the Pamplona Fiesta, fishing, Bullfighting, and forbidden love. Hemingway was clearly a romantic. Did you know he was married four times? Only a true romantic gives marriage that many goes.

The passage that stuck:

“I had been getting something for nothing. That only delayed the presentation of the bill. The bill always came. That was one of the swell things you could count on. …You paid some way for everything that was any good.”

If that’s not the truth I don’t know what is.

I kept thinking about it’s application to health. That very often, when you have your health, it’s free. They say your health is like your breath–you don’t pay attention to it until you lose it. I think back on life before the relapse, and how I’d done nothing to earn my state of ‘decent’ state of health. I’d also done nothing to earn the relapse that eventually followed. It felt like someone at my door, come to collect a bill every day, when I hadn’t purchased anything. When well, I was getting something for nothing, without even knowing it. Once sick I had to begin paying for those somethings, and surrender what I couldn’t afford.

My hope, and I think my belief, is that it doesn’t have to mean the surrender of those things that matter most. When you’re forced to give things up, it feels just that way. But learning to live without them has been an ongoing lesson in letting go of what I thought I needed in order to live a life I liked. You end up finding a whole other you behind those old roles. It offered a strange opportunity to see my own self without these external identifiers. That allowed me to see the world differently too. I’m (still) learning it’s up to me, more often than not, how I choose to see both.

But, as the man said, you paid for anything that was any good. Many things that allow me to feel alive and good come at a cost. It’s like a tax on fun, in the currency of health. Actually I also pay the tax when I haven’t had fun. REAL COOL BODY THANKS. At any rate, I feel fortunate I still have people and places and experiences to (sometimes) overindulge in at all.

0-3 0-5

Like him. He’s worth it.

I imagine everyone has their respective “things” or indulgences for which a bill reliably comes. And maybe depending on what point we’re asked, during the playing or the paying, would we consider whether or not the juice was worth the squeeze. For me, mostly, paying the bill feels worth it when I’ve decided to splurge. Girls gotta live sometimes.

Health, Happiness, Paying the Tab

The List of Broken Things

Published on April 12, 2019April 12, 2019 by Mary Gelpi2 Comments

Everything has been breaking lately. The dryer, the tractor, my phone, the pressure washer, leaks in the ceiling, moisture stuck in the windowpane. (I could go on.) And for the last I don’t know how many months: me. Just add my body to the list of broken things. That was the thought I had while my mom listed everything going ka-putz on us.

I am getting in to bed and once again praying for the normal things, that we can find the right people to fix what’s broken, expressing gratitude for all I have, all I’ve been given, and a special intention that tomorrow will be better than it was today. A prayer I’ve been saying basically since Christmas.

2019 has been such an immense challenge. I feel like there’s some secret virus within trying to take me down, then I remember that Oh right, this is what a bad crash feels like, I’m just not used to them lasting so long. The last few weeks have been really trying.

I haven’t been getting out of bed until after 3–not really waking up I mean. As soon as I feed Monty then feed myself, I’ve reached my limit. The first ‘mini’ crash of extreme tiredness and weakness rolls in like a heavy fog, and I feel like I can do nothing but collapse under the weight of my newly dense body and immediately fall asleep. This isn’t so typical of my crashes. I rarely actually sleep that much at all. I’m horizontal, but not dead asleep. This feels new and I just can’t figure out what’s going on.

I’m writing this on my phone because trying to type on my computer from this position just doesn’t work. I have so much I’ve been writing and wanting to write and post, but finishing anything has been nearly impossible. I feel so angsty leaving the blog blank, so I figured I’d let it be known that I’m alive, I’m just probably asleep as you read this now.

It’s been hard accepting the strict terms of this crash, which has been very little upright time, and littler awake time, so it feels anyway. The weather has been beautiful, and this being my last Spring in this house, I’d prefer to enjoy more of it before I go. But for whatever reason I have really been taken down by such a “late blooming” crash. Typically by this time, the inevitable “Christmas Crash” has faded, and the good weather usually gives me a health boost. I don’t remember ever being so debilitated in the Springtime, but me no likey.

My parents are busy trying to prep the house to go on the market and cleaning and fixing things, yada yada yada, but I’ve been more of a useless flesh tube than ever! It’s crappy timing because I know they could use the extra man power, but luckily people like the amazing Matt has donated so much of his time to help any way he can. And I know friends like that are something to stay grateful for during all this.

And Miss B, the woman who cleans my house and literally makes it a sunnier place as soon as she walks in. She calls me “sugar” and “baby” and when she leaves she hugs me big and says “I’m prayin for ya Mary.” I tell her the same and she says “I love you, you’ll be better one of these days.” I tell her thanks. That I love her too. And that I believe her. And for whatever reason, I do. Cleaning lady? No, she’s like some angel who happens to clean up while she’s around.

She was here this morning and I slept through 3 of the hours she worked. The sound of the vacuum tracing lines in and out of my dreams. I never sleep while she’s here. We normally talk and laugh and even cry sometimes, covering all the bases while I drink coffee and she cleans in circles around me. I watch her energy in amazement.

Then Matt came around 2 and has been pressure washing all the cement around the house outside. Talk about back breaking work. I tried it for 10 minutes yesterday and had to come inside to take a breather. (Pathetic, I know) As soon as the machine started, I laid my head down and fell immediately asleep, not waking up until well after 5, feeling terrible. Matt was still working and I watched him outside as he worked, his headphones in and in his own little world as he managed to clean so much surface area. It feels like a miracle when I watch capable people do hard work. But these things that seem like miracles maybe actually aren’t–it’s just what you’re able to do when your body knows how to be a functioning human body. The miracle is the kindness of people who are so willing to help. I guess it’s just been so long, I can’t remember anymore what that physical capability must feel like. But let’s just say I fantasize about it more than ever.

I believe I’ll get there one day. That all of us will. I can’t explain it, but there is this solidity in my gut, magic ball that shows me living a life where I’m well, usually I’m outside pushing a kid on a swing. My kid? Don’t know, I hope. But I just have to believe this will happen in my lifetime. If I’m 60 well then, I’m 60. But my gut shows it far earlier than that. So just hang on yall. I know we will get there, we just have to make it through this ridiculous, tough middle part. It’s only like the 3rd hardest thing in the world! But we can do it. Our time of health is waiting for us. In the meantime, I’m lucky for people like Matt and Miss B, more grateful than ever.

So it’s back to my usual routine– getting in bed, saying my prayers and asking God to please, PLEASE (just to make sure she’s paying attention) give me some energy tomorrow and let my rest actually refuel me. There is so much I want and need to do. Like take a shower– it’s not asking so much! I know I will break from this crash soon, or I am hopeful and expect that outcome. I also know the toughest part of the game (for me) is surrendering while you’re in it. Remembering this too shall pass. Right? Right.

I feel I’ve been doing too much surrendering, and I wish there was a way to successfully fight back against this thing. But I’m out of ideas. And I’ve been sick long enough to know what happens when I do push against it. Might as well run my head into a wall. I can’t afford to pay anymore. I’m broke! Body broke. I know I just have to wait it out, and I will emerge eventually.

At any rate, maybe God reads blogs in all that spare time she must have. So maybe she can check this one out and throw me (and a few million others) a bone. Oh and Monty too, not because he likes bones but because he injured his leg yesterday and now he’s out of commission too. When I say everything is breaking, I mean it. Just great.

Anyway, I’m laying my trust in the universe, in an intelligence that knows more and better than me. But I am hopeful too, always hopeful, that tomorrow might be the day things start to turn around. And if it’s not, well, maybe I need to send a package of pill bottles and a petition to Heaven and get their attention up there.

A final thing- next to my bed is a medicine stick that was given to my dad by a traditional Indian medicine woman, back when we lived in Colorado. It’s made with a coyote skull on it and has a bunch of different symbolic items painted all over it, with feathers hanging down and other things I don’t know the meaning of. Of course my dad was sick and dying from cancer when she gave it to him. But I remember him in his compression stockings walking laps through the kitchen, living room and dining room, carrying that stick with him, with a smile on his face. Obviously it didn’t cure him, but maybe it made his struggle less. Maybe it gave him courage in the face of pain and fear. Maybe it gave him strength to fight for just the right amount of time before he knew his work here was done. At any rate, I look at that coyote face and ask my dad for my own kind of help, whatever kind I need the most. Hah, I don’t even know anymore. But it gives me hope anyway, having it here, having seen me through some very sick times and also seen me emerge through them as well. Not breaking. That’s about as much as I can hope for, for now.

OK, time to sleep for the seventh time today. I have many more happy things to write about, once I’m able to stay awake long enough to put them together and edit them properly. My mind of course has struggled too lately and been a bit scattered. It can hardly distinguish between dream life and reality anymore. Which makes sense considering how much time I spend on the other side of things. But I don’t think it will be much longer now. Hoping this coyote skull will bring some healing this way. Or at least the strength to smile through it, just like my dad did, who was up against far more than I am. Now that’s remaining unbroken. I’m so happy he showed me that was possible.

All the best to everyone, and I expect to be back on the up and up soon.

Health, Happiness, & Unbroken Things

Confronting Change You Can’t Control (Part 1)

Published on March 21, 2019 by Mary Gelpi15 Comments

It could always be Great.

My mom told me to write that on every wall and mirror around the house. I was on the phone with her, basically in a downward spiral of apprehension about a major change happening this year that is mostly out of my hands. Allow me to rip off the band-aid: My parents made the decision to move to Colorado this year, back to my hometown. Pause for dramatic effect.

Many reasons played into that decision, a big one being that a majority of my moms family lives there and we will have a tighter community of support. Given that 2/3rds of our fam is sick and one family member is a dog, the move makes sense. It can be a tad isolating out here on the ol ‘farm’.

My moms casual reminder that it could always be great was a nice departure from the supposedly optimistic adage “Hey, It could always be worse!” I’m not sure that phrase has ever really made me feel better while in the midst of a struggle. It’s like “Well hey, both of your legs could be blown off!” “Riight. That’s true. I could have zero legs right now. Cool, thanks. I feel better.”

So yes, I have both legs, but I am still pretty afraid of the whole thing and I guess that makes sense given the scale of this. It’s a big change, and since I don’t have the health to live on my own yet, it’s one that’s out of my hands, which always adds a pinch of frenzy. I’ve sort of tortured myself thinking of ways to stay here, but I just don’t have the physical stability to do it. This last crash that’s held me down since Christmas just reinforces how mercurial my *health* is and how unreliable I am as a result. A few weeks ago the crash finally let up for roughly a week, then returned angrier than before, and I’ve been essentially a half-living disaster since then. Yeaaaah wooooo!

You can see how thoughts like that (I’m sick, my life is chaos, I don’t have jurisdiction over my own life) can play with your mind the way a cat bobbles a feathery toy around. It can take your whole outlook and shape it in many variations.

One of the hardest parts the last few months has been maintaining an open mind that this might actually be a good thing. It’s meant a lot of reigning in of my thoughts, which tend to go default mode into armageddon type thinking. It’s as though some small part of me decided early on that since I didn’t choose this, it wasn’t a good idea and it would end in disaster for my life. And it’s pretty crazy how easy and quickly those thoughts can assemble, pile on one another, and leave me completely convinced that I’m going to melt away and die in my parents basement…or some other absurdity. I don’t know where that fear stems from—I mean I’m pretty sure they have internet in Colorado.

I’ve had to work to clean up the useless, unhelpful thoughts that tend to mess with my mind and sense of wellbeing. By that I don’t mean I dismiss all the thoughts or feelings I have about this—which are of course, a lot. Certainly there is a legitimate sadness and type of grief that comes from leaving what’s been home the last 18 years. Those feelings deserve their own validation and processing because, damn, it’s sad to leave the people and place you’ve come to know and love so much. Louisiana has felt familiar and comfortable for a long time, and it will be tough to leave, even if I do plan to come back. ;)

What I am referring to are the haunting thoughts, the ones that make you feel bad about things that are not within your control.

This kind of thinking totally blurs and limits my perspective about the life I have. It dismisses all the good and incredible parts of it, doesn’t see possibility or feel hopefulness or gratitude. It downsizes the significance and value of people and things just because they aren’t in line with what I had planned. (I think humanity might have an addiction to plans but that’s another day) These are just hypothetical scenarios based mostly on fear and a future no one can actually know. Like Tolle says, it is always more empowering to face facts. Even when the facts are scary or we wish they were different, it’s in acknowledging the real and being present in the now that we have access to our innermost power and strength.

I realized early on how incredibly contrasting the outcomes are that emerge just from framing things in my head one way vs. another. This is something I do have control over, and it’s become pretty important that I put this ability to use, otherwise the ugly thoughts take over and down the rabbit hole I go.

It’s been a good but difficult exercise to step back and try to just watch the way my mind can interpret the same reality in two completely different lights. The modern mystics would advise to consider the circumstance from the point of view of an objective observer. Watch your thoughts, but don’t become entangled in them. Allow them to appear, then let them go. Easier said than done, of course. But at any rate, the mind astounds me in its duality. For instance..

Here is one side of my mind thinking about the move: Reiterate the story that my life is out of control, that the disease makes all the choices, that I have no say so about things and thus can’t really be happy because it’s not up to me. My personal growth and goals and contentment will all be stunted or I’ll cease to pursue them because my lack of health and other people have the wheel and I’m just a passenger to my own life. What’s the point in trying? As a passenger I don’t decide where I go and thus my happiness isn’t my option but one left up to others or whatever new circumstances materialize without my consent. I don’t want to go. It’s not fair I have to leave what feels like home. What about my family and friends here? What about my dream to live in uptown New Orleans one day? Now it will never happen. I guess I’ll go eat worms.

I can’t tell you how easy it was for each of those negative thoughts to formulate, one after the other, building on each other like a lego tower turning into a whole city…

Now here is my mind consciously thinking about the move: Colorado? That’s cool, I guess I’ll get packing.

Could the differences be that dramatic? And is it actually possible to participate in your own life that way? In The Untethered Soul, Singer makes the point over and over that of course it’s possible! We don’t always decide what happens, but we always the ultimate say so in how we react toward the circumstances of our life. And it’s those decisions, not what happens, that leave us either content, at ease, joyful, whole, or bitter, angry, jealous and depressed.

All it took was a few negative thoughts to quickly unravel into my making the choice to play no part in my own autonomy or the trajectory of my life. Just because I’d be living somewhere else, I removed myself from having any accountability in manifesting a life I wanted or that I could be proud of. That’s a crazy conclusion to make! But when you’re present and you actually break down your thoughts, you see what a huge majority of them are insane and simply need to be let go of. That’s not so easy when you’re hit with an onslaught of frenzy and angst, like a whirlpool that takes you down, where there’s no clarity.

So I have to practice at disarming the egoic force from taking over in my head, which I do by sword fighting the air with a Star Wars lightsaber. Just kidding. Like Tolle teaches, whenever I have a future based thought made mostly of fear, I replace it in my mind with facts that are actually true. I try to repeat positive reminders instead of playing a record of apprehension on repeat with a sad ending.

In other words, I do the thing basically all chronically sick people must learn to do at some point: surrender.

As always by ‘surrender’ I don’t mean give up–ever. I mean to leave a neutral space open in your heart and your head where good things can happen because you allow a new path to be paved even though you didn’t design it. If I had understood earlier on in my relapse that reality doesn’t really care about your plans, I might’ve saved myself a good deal of pain from what was already such a hardship. I thought I could fight things that were already in place and moving quickly forward. Life was just waiting on me to catch up to what was real, instead of trying so hard to hang on to the way things were.

All I know is that there is a pulse to life, a certain beat that resonates deep within us as individuals and as a collective. We can typically feel through that pulse a general sense of what direction life is moving in. We can resist. Be the fish swimming upstream. Or we can lean in and greet life with an open and adventurous spirit, despite limits and changes and things beyond our control. It’s true I am afraid and I’m sad to leave what I thought would always be home. But I have been shown over and over the miracle of surrender, of allowing life to ‘move me’ and the amazing outcomes that can result when we feel fear but move forward anyway. It always comes down to following that thumping compass we hear deep within and far beneath us.

Here’s hoping that it just might be great.

Health, Happiness, Hello Colorado

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Why Is It So Hard to Pee Into Those Urine Sample Cups?

Published on February 20, 2019 by Mary Gelpi8 Comments

Is it just me?

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

Is it just women?

It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys?

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all. Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling. Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee. It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?! GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Health, Happiness, A Clean Catch

Lost: Life Force. Answers to ‘Mary’

Published on February 11, 2019 by Mary Gelpi1 Comment

*I Wrote this last week. I’m feeling better now ;)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point.

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else.

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things.

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried.

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up.

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do.

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route)

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now.

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day! I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all.

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris.

brasserie_restaurant_paris_france_cafe_table_dinner_seat-807694.jpg!d.jpeg

I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

I think for now that has to be enough.

Health, Happiness, Surviving

Day 7: The Final Day

Published on February 4, 2019 by Mary GelpiLeave a comment

Day 2

Published on January 30, 2019January 30, 2019 by Mary Gelpi1 Comment

Day One

Published on January 29, 2019 by Mary GelpiLeave a comment

Seven Days at a Type Writer

Published on January 28, 2019 by Mary Gelpi1 Comment

A Few Things Happened

Published on January 20, 2019January 21, 2019 by Mary Gelpi8 Comments

Let’s talk. I’m just going to write in list form. It’s easier on my brain for whatever reason right now.

I SHOWERED.

I can’t explain how good it feels to be clean to such a degree as an hour shower will get you. But even better is the smell of my shampoo emanating from me now. I have so little to brag about, but I have to convey how good it feels to smell this FRESH people. It needed to happen, I was too sick for a while, and now finally it has. I sat on a geriatric shower chair instead of taking my typical bath. My wobbly, cinderblock legs are smooth. My skin is clean and feels almost cottony. I spent more than 30 minutes picking out Shampoo at Walgreens a while ago, searching for the perfect scent and I seemed to have found it. It’s left my hair emanating the scent of some subtle, tropical, white flower with tiny pink buds (and no nitrates!) Whatever that means. The scent is what Jennifer Anniston’s scarf closet would smell like. A shower is nothing, I realize. But in my bite-size, do-nothing world, a shower and this residual perfume of the Gods makes headlines. “Local Girl Smells Good!”

2. Secondly, in insanity news, the SAINTS JUST LOST. (Pause. Pour some beer out.) It was no one’s fault, it’s just that sometimes a defender leads with his helmet and interferes with a receiver in order to prevent a reception and somehow he doesn’t get called on it and essentially the whole outcome of the game changes. The non-call smelled like the opposite of J Anniston’s scarf closet. It smelled like what an old Southern man with leathery skin would say as he put down his beer with his eyes glared at the TV: AH HORSE SHIT!

3. Oh good LORD, my hair. This foresty, soapy, new car yet feminine fragrance…How is it even possible?!

4. OK. It’s not like the Saints losing was any one persons fault. These things happen. I mean just like sports writer Jack Baer wrote “If it wasn’t pass interference, the helmet to helmet hit almost certainly should have been called a personal foul. Either way the Saints should have received a 15 yard penalty and a fresh set of downs with a minute 45 remaining, which almost certainly would have effectively ended the game.” See? These things just happen.

5. Idea. Maybe I could charge money for people to smell my hair up close. This is how I can pay for the research that the NIH will not. $100,000 per whiff. It’s also how I can earn some kind of money if my Sofia-Dorothy relationship with my mother goes South or she dies in her sleep and I need to make money to keep the farm afloat. Either one. (Kidding mom, you know you’re my hero and you can never die)

“Hey Can I Smell Your Hair?” “Yeah, it’ll be $100,00. Make it quick.”

6. I can’t believe that non-call just happened. I still feel so shocked and bummed about it. At the same time I feel so hashtag blessed to smell like flowery beechwood that it diffusses the sadness a decent amount. What if I smelled bad and the Saints had a playoff game that was STOLEN right out from under them? Talk about feeling crappy and smelling like craigs-list. I mean I wouldn’t say the game was stolen from us…it’s just that

The New Orleans Causeway Tonight. We’re subtle with our emotions.

8. Monty has gas. I realize Monty always has gas, but this seems specific and particular gas. It’s smells sad. It feels like especially offended gas that could only be expelled for a special occasion. He’s looking more sad than guilty, as though farts are the only way he can physically grieve. They are the tears of a game getting blown. The gas makes me sad, but then I smell my hair and feel glad. It’s funny that smells can make us temporally happy or sad. The realm and cause of human emotions is really pretty extraordinary.

9. Were we really supposed to lose that game or was it a comic hiccup? Some existential mistake? Tolle would say it was no mistake that we lost, because it’s the experience we endured. “The fire of suffering becomes the light of consciousness,” he says. But I fear tonight the light will burst from cars lit on fire and a ref that requires a 24/7 security detail. I joke I joke. I believe

10. I wonder if my shampoo truly comes from Maui. Something tells me it doesn’t. But due to the beautiful potency of its scent how could I care from where it emerged?

11. Cleanliness is Godliness.

12. Monty’s gas has begun to transition into “It will be OK. But that call was true and authentic stinky bull-dung.”

13. Like my mom says, at least we don’t have to be tense next week.

14. BUT MOM I WANNA BE TENSE I JUST WANNA BE TENSE WITH REFS THAT MAKE SURE THE PLAYERS DON’T BREAK EACH OTHERS HEADS!!!!!! Fine I’ll go to my room. No, YOU’RE being obnoxious! …Yeah I have some darks I need washed.

15. Saints, I’ll be your forever fan. Next years is ours. But on a personal note, you’ve given so many of my Sundays a happy distraction from what hasn’t been an easy year or years. Watching you play has energized me to a happy place, and I’ll always BELIEVE DAT you’re a team of good men, win or lose. I’m grateful you’ve made it as far as you have. You’ve been the joy of Sunday’s for much of my family and I, and I hope you feel the pride of the whole city behind you, my dog Monty, and me. See you next season.

Health, Happiness, Who Dat

Meaning in the Mud

Published on November 11, 2018April 23, 2023 by Mary Gelpi6 Comments

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter.

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

Need Some Funny In Your Life?

Published on August 2, 2018 by Mary Gelpi4 Comments

I have not seen this film, and I don’t think I actually need to. This trailer is so extraordinary, I think it might ruin how much laughter it brings me if I were to cross the line and actually watch it. If you need a good laugh, please watch this trailer, from a real movie made in the 80’s. (Not ironic) GYMKATA promises to bring a lot of things to the table. I don’t know what all of them are, but fighting from a pommel horse in the middle of a village and laugher are foremost.

Just knowing this film exists brings me comfort and is somehow a reminder that everything will be OK, even in times when it feels far from it. I don’t know how, this is just the power of humor people! And I believe in it, wholly. So, here it is, the film trailer that will save us all. Or at least make us laugh, which counts for something.

Health, Happiness, the 80’s

*Thanks to Matt, for showing me this glorious trailer one boring afternoon. It has brought me so much joy.

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