Humor – FibroM.E.-Awesome

A Good Show

Published on April 22, 2023April 23, 2023 by Mary Gelpi7 Comments

There’s this really good show on Netflix called Michael, Tuesday and Thursdays and I can’t recommend it enough. If you want, you can stop reading there and go ahead and watch it. For any other reason, I’ll write a little more.

It’s been a particularly rough Saturday. I’ve cried hard twice, not to mention that crying gives me migraines. So once I finally get it under control, if I just so happen to make the very human error and have the audacity to cry twice in one day, I get the beautiful gift of two migraines. Cool!!!! Ah, that’s just self pity at work. I’ll ignore it if you will. The point is, I’ve had better Saturdays.

It probably doesn’t matter a lot why I was crying. Although, given the over-arching topic of this blog, I guess it does seem pertinent. Mostly it has to do with the exhaustive, skin-crawling, seemingly unattainable task of accurately describing this illness to other people—the people you care enough about to sit through all the expected questions, and probably a good three or four you haven’t heard before. It should be such an easy dialogue. A simple back and forth of mostly yes or no questions with neutral answers that would fulfill every facet of a humans curiosity. That’s how it should go.

For me, it rarely does go such a way. I can’t help but wonder, if the disease were different, would the discussion be different? And you can’t help but be me and hear an obvious, resounding, validating y e s as an answer. But that’s engaging a reality that doesn’t exist. And for the most part that rarely goes well for me.

Another side of the coin to consider, is what it feels like to be relatively healthy, and be on the other side of a persons life with M.E.. A life that can so easily look the part of ordinary, but can’t produce the tangible value of a “normal” life. It’s not to say the other person sees it that way or doesn’t, but I’m trying to imagine my own personality, character, and basic psyche from before I was sick (another mostly impossible task, by the way). How would I feel about a person, “presenting” as I do? Maybe I would have no problem as seeing them as a product of their own choosing. Maybe I would see them as simply not trying hard enough. I would probably, which is how it goes most of the time, assume I had answers and capabilities that would keep “hypothetical me” from turning into this sick, human-wasteland “me.” It’s a common response, and I believe it’s actually a defense mechanism, by the way, not at all a mal-intended one.

In this circumstance, seeing someone who looks like you and mirrors your life in any number of ways, simply “succumb” to some disease that stripped them of nearly everything, you need an out. You need a reason why it could happen to me but not to you. I’m talking about livelihood, and the loss of it. What’s to keep you safe from knowing it couldn’t happen to you? The mind has its methods.

It makes sense. In thinking of my own mind and ego, I’m presuming that that wouldn’t be a too-far-off possibility of how might I react. I could naturally assume my will power would be stronger, my body would fight it off, I wouldn’t let myself sink that low to a state of non-productivity and lack of social interaction. Or perhaps, I might see it as a simple lapse in mental state—and I’d want to trust mine enough that I’d never let it be that vulnerable. These are all just chance reactions that I’m considering I could have—as well of course, reactions I’ve witnessed over and over and over again. In either case, the mental default of the person on the other side makes sense.

It does however, strain the sick person, to the fault of no one (except the NIH ahem ahem). Psychologically, it’s a struggle, which puts more pressure on the brain, and so usually means a poor physical response too. With M.E., emotional stresses are just as causal for a crash as exertional ones. So every time you’re having to re-explain something, or explain it from the beginning (which feels at times, impossible), it can come off as an ongoing battle that you’ll never quite win. It sounds like a blatantly negative attitude, but it’s because we know it’s impossible to convey an illness to a person, when that illness isn’t even well defined in a book. Or among researchers or doctors. Or google. If med school hardly touches it, where do we start?

We’re literally learning in real time how to live a meaningful life, when it can’t deduce meaning in all the conventional ways. That struggle is enough to make anyone…dare I say it, fatigued. But then to *feel* like you’re constantly having to convince people that you are in deed, trying is another struggle to join the mix. So at times, for me anyway, it can feel crazily overwhelming. And either rationally or irrationally, sad. A real hurt. I guess it could easily feel that way for the person who loves you on the other side, hating to have to watch this illness wreck a person in real time.

I probably fail to consider that side as much as it deserves.

From watching this show, I’ve realized a lot of people, particularly those struggling with depression and anxiety disorders, never arrive at the road called “Cured.” It’s one reason why they’re in therapy. Some can be cured, certainly. But some are simply learning to live and survive through the extreme discomforts they feel daily, hourly, moment to moment, whatever it is. And that is something so many of us within these blurrily defined categories of “lacking conventional health” share.

None of us have to try very hard before we feel alone floating on our individual islands. But there’s also the truth that we’re enduring these things, these lacks or voids, together. And it’s good to remember that, for whatever potentially sadistic reason. Maybe not in an “Oh others are in pain too, thank God” kind of way. But that we’re all up against certain things, and our collective seeing them through to the other side, brings us closer together in a human sense. At least the possibility of it exists there.

The more one person defies their mental or physical limits, the more likely for another to do it, and so on and so on. It’s not about beating the disease, but finding a path where not everything in life feels predetermined by it.

Maybe that’s the hushed solidarity we feel in sometimes hearing about the hardship of someone else. Maybe it’s a quiet, subtle reminder, that in each of our respective battles we’re individually aginst, we’re not alone. And that reminder, it seems, can never be bad.

In any case, I’m speaking in specifics and generalities. The specifics are why I cried, but the generalities are the bigger take away. This will always be hard for me. It may be for a lot of people. But the best I know is that by continuing to talk about, explain, and defend mecfs if you have to, the closer we will come to a time where we won’t have to. I wish we could be there now, but there’s no speeding up society with one press of a button. It’s up to all of us now. Keep talking. Keep listening. Don’t be afraid.

Last thing: The song introducing the show is so good. I’ve put it here now so you can plug your earphones in and listen. It’s worth it.

Health, Happiness, Another Wild Saturday Night

Strega

Published on April 17, 2023April 23, 2023 by Mary GelpiLeave a comment

I’ve just finished reading the most beautiful novel, Strega, by Johanne Lykke Holm. I am stuck in it. And on it.

I finished it days ago but my mind still feels trapped in the delicately told domain—A fantastical, once celebrated Hotel secluded in the mountains above the mysterious town of Strega. It’s called The Olympic, where nine 19-year-olds will supposedly be taught how to be turned into proper maids, women, eventual wives and mothers. Three older women mentor the nine, but the story is told through the perspective of Raphaela, a girls whose voice is haunting and lonesome but immediate, succinct, and deeply resonant. I read it in two and a half days, and I’m not exactly a fast reader.

Of course, the ostensible “plot” of the novel is not exactly what pulls you in, although even on its own, with only average prose it would have this capability. Truthfully it’s the one-of-a-kind style in which it’s written, translated from Swedish in fact, that makes it compulsively readable.

The story is told with incredibly ornate, impossible detail. It’s as if muted dead flowers mixed with a tray of metals and crystal diminutives and fragrant oils, inside a strange, old and deviant hotel came alive to hint at its past and warn of the future. Nearly every sentence feels like it took everything from the writers fastidious mind to form itself, and then it took more. And that’s how it reads too—as though the words via some supernatural force possessed someone into airing them out, refusing to be ignored before materializing through bleeding ink on a fresh white page.

The fragility and uniformity and meticulous measure with which each sentence offers itself becomes a quieted mediation, edging toward prayer and mercy, on lonliness, on the unbound love of female relationship. On autonomy and community. But the text isn’t lonely itself, it’s merely strange and dark and unflinching. It reaches out and resonates with the readers own memory, reminders of ones own loves and losses, and maybe most of all, on that undefinable nature of meeting someone and knowing them before they even open their mouths to speak.

Like most books I finish, I felt a total void afterward, because the author pulls you in deep, with mysterious descriptions that somehow poke at something in the depths of you. Places in the body you hardly knew were there. And the dream-like writing, which sometimes snakes into the “everyday descriptive” sort, is done so seamlessly—It’s as if a Murikami novel and a Wes Anderson film had a baby. Of course I had to restrain myself from underlining every other passage of words because they’re so immediate, I swear I smelled rose water the whole time. You’ll get what I mean when you read it. And you WILL read it! You simply must.

Even the cover, smooth matte black with beautiful gothic flowers…it makes you want to go back. The book itself feels like some secret treasure. I keep it in my bag, and I don’t really know why.

Here were a few of my favorite passages…don’t worry, no spoilers.

“I longed for my own room, the locked door, my little cell. I was a lonely person, I had been alone all my life. One is alone even in the company of ones mother. One speaks, and it echoes inside her.”

“The sky laid itself over me like a horse blanket.”

“We came from various places, but were of the same age and mind. None of us wanted to become a housekeeper, and none of us wanted to become a wife. We had been sent here to earn our keep, to become people of society. We were daughters of hardworking mothers and invisible fathers who slunk along the walls.”

“But I did as they had asked of me. I liked being an obedient daughter. It felt like being held by a beautiful patent leather collar.”

“Across the street from my sisters apartment is some student housing. I used to hang out there, by the main entrance, staring at anyone who walked by. They were all carrying bundles of books and wearing those sand-colored wool sweaters, you know, the ones one imagines smell like horsehair or a run ruined by damp. When I saw them, I wanted to spit, but I didn’t, out of self respect. …From my seat on the living room floor, I could see my mother walk u. She had cut out an ad from the newspaper. She called to me, as if I were on the other side of a frozen lake.”

“The tar burned into my lungs and into my fingertips. If you can’t give your body the good stuff, give it the bad stuff.”

“I called them the ghost rooms, not because they were haunted, but because rooms unvisited by humans simply begin to attract evil.”

My favorite one…

“Our parents were all deluded about the fact that the the world had changed and would not go back to being what it once was. They did not believe in a future without the good woman and her duties. They wanted to prepare us for a life where we would care for child and home, where we would stay with one man, no matter who he was, where our hands would repeat the same movements. At the hotel, our hands always repeated the same movements, but this was no place for a good woman.”

“There was something serious and industrious about her forehead.”

“Did you see him, she said during intermission, the murderers face?” I shrugged and bowed my head to hide my blush. I had an urge to put a curse on him or stab him with my knife.”

“I sat up with a jerk, suddenly wide awake. It was as if my body knew something that the brain hadn’t registered. I took out my lighter and quickly crossed the room. Held up the little flame above the beds and counted.. [all eight girls] Cassie was gone. I rushed over to her bed and tore the covers off, my hands searching the sheets, as if she might appear there, doll-size, hidden under the pillow.

…The bed was otherwise untouched, as it had stood since early morning, when the sun billowed in through the window like flames. I crawled across the bed and pressed my my hands to the wallpaper above the headboard, convinced for a moment she had been swallowed by the wall. I walked over and shook Alba. I whispered I can’t find Cassie.

…Her bed stood in the middle of the room, perfectly arranged, like a crime scene.”

Flipping through the book now I simply want to write out chapters so you can swallow them whole. In actuality, the chapters swallowed me whole. But I was ripe for it. I love when books take you that far away from a weekday afternoon.

In other news, this is the third day in a row where I have felt crashed, weak and heavy, and I have to consciously work hard not to fall victim to the fear that my entire health is going down. Crashes happen. I probably pushed it too hard last week. I have to believe that one more day of rest will be enough to pull my out of it. I also have to believe if I still feel this way tomorrow, that’s OK too. I just have to take it easy. So why not wax poetic about a book I love so much it feels like I’m holding a secret treasure, just flipping through the pages.

All will be well, and worrying, as they say, is like a rocking chair: It gives you something to do but get’s you nowhere. I guess that’s the things about to-do lists, they always wait for you until tomorrow. But it’s my sisters birthday, and birthdays don’t wait! I’ll plan for the best. Until then.

Health, Happiness, Stregaaaaa

Thank You Merric, My Eternal, Reliable, Recommender of Incredible Books ;)

A Little Older Now

Published on April 6, 2023April 13, 2023 by Mary Gelpi13 Comments

A little while ago I was haphazardly complaining that I couldn’t believe how old, number-wise, I was. I didn’t really feel older. I still feel like an idiot kid figuring it out litrally (said with accent) every day. My cousin Brenda piped in with something that should have been obvious. “We’re all getting older Mary. You’re not suddenly older than us!”

What a self-evident, seemingly obvious take on things. I had it somehow in my mind that only I was getting older, while everyone else stayed the same age. She was right, we were all looking the same, while somehow kids were growing and seasons continued to change and evidence of time past surrounded us wherever we looked. I guess that’s all to say, It’s been a while. I’ve missed you. How’s things?

I had no idea how to re-enter this little world I created so long ago and then took a sudden hiatus from for what, two years? Was I doing other important things? You could say that. (I wasn’t.) I was just living, plain and simple. The way people in picture frames and advertisements live. In some sacred moment— without a history of the last 10 years. No memory of being consumed by illness. Nothing lost. All I could ever need, I have. I’m just a smiling girl in a picture, no past—inhabiting ‘the eternal present’ as Tolle calls it. I erase it all.

The taking. Of friendships, relationships, autonomy and money and time. The leaking. Into every corner of my foolish little life. The waiting. In line at the pharmacy. In the first room at the doctor. The exam room at the doctor. On hold with the pharmacy. On hold with the insurance. On hold with the doctors office. And the loss, naturally. The loss of self to something I thought stronger than me. Of livelihood. Of growing into something impressive. Of opportunity. Of ways to make a mother proud.

There had to be a reconciliation with all of all that. And in truth, I might say that every day is exactly that. An eternal letting go, surrendering to what was and is real, all the while continuing to move forward. Embracing what is real and true by the ever changing second. Not to grieve the same things twice. In order for Life to overcome loss. To give what used to be taken. To have gratitude while I wait, because hey, at least I’m able to be here in the supermarket and wait on two feet. Not for long before it hurts, but I am somewhere. I am not a living couch.

This all points to my life now and how things have changed. When I look back at the move to Colorado, I see just how much of an insane shit show it was. We left with high hopes that Rocky Mountain air and crisp clear Colorado water could do nothing but help me. I’d have to feel better here, right? Wrong. It’s all too hilarious that I moved back into my childhood home, but moved into the basement. (It’s a finished walk-out OK!?) Every 36-year-olds dream. I did my best.

Looking back now from a stage of much higher functionality and a new, certain “availability” of health, I see how bad it was. My memory fills with images of me crawling up the stairs to the kitchen, on four legs like a monkey, because I was too weak to walk on two feet. Dizzily stumbling to the bathroom every morning, squinting in pain. Clothes all over the floor and Monty’s chew toys, because there was no energy in me available to do unnecessary things. Multiple Zooms with multiple doctors—zero real answers or treatments. A constant shortness of breath. A darkness under the eyes.

I rarely, ever left the house. People thought it was because of Covid. For me it was just life. For so many with chronic illness, quarantine was simply life as they already knew it. Covid was nothing but an interesting reminder that other people were also at home on a Tuesday afternoon. (Plus a whole lot more. We’ll get there.)

The truth is, I am very, very lucky. I write that with a strong knowing that it’s not even fair, what I’ve been given, because it’s what everyone should be given: a knowing, caring doctor. An MECFS specialist who treats exactly and only that. Proper healthcare. I can hardly convey how stark the contrast—visiting 6 different doctors in New Orleans to address eight different issues and dispense twenty medications, compared to one, bright, excessively knowledgable doctor, in charge of all my medicine, who knows so much more than me about this disease—which, it should be said, is how it should be. The patient shouldn’t have to wonder if the doctor has ever heard of her disease, let alone whether she says its name out loud. That is, if she even mentions it out loud at all. It’s always a gamble. Tell them or don’t tell them? Don’t. Unless they say it first.

Imagine. This will be a time in history, one day, when we look back and say “It was a gamble to even say out loud the name of your disease in the presence of a doctor. It meant they likely wouldn’t believe you. Which meant they couldn’t or wouldn’t help you. Which meant, well, here’s the number to a therapist, in the end. One day in the future, we will look back at this reality in awe. Shock. Shame.

With a lot of luck, but mostly hard work and some gambling on the part of my sister, she was able to arrange an appointment with Dr. Yellman, of the Bateman Horne Center in Salt Lake City. It’s only four hours from here, so even when I have to go, it’s a beautiful drive. I think most ME patients would be eager, health-willing, to drive for days to see this kind of doctor. Like I said, I’m lucky as hell that I got in, and I am far from the most deserving. I’m constantly grateful to have him on board and also a bit woefully heartbroken that so many sick people don’t have this access. To those I say, please hang in there. We will get there. There’s work to do. There’s so much work to do. But we can do it.

I should perhaps clarify that no, I am nowhere near perfect health. What changed is that my specialist is treating all kinds of things that a regular PC doc wouldn’t. Medicine like Cromolyn for Mast Cell Activation Syndrome, Pyrodistigmine for POTS, electrolytes and compression leggings for all parts dysautonomia. (That last bit is the easiest change you can make right now. I’ll post the leggings I use. That and at least one liquid IV a day.)

I still crash. Push and crash as though I haven’t learned this lesson a thousand times. But my crashes are less extreme, and a lot less long. This last month reminded me I am very very far from invincible, and it still doesn’t take so much for me to overdo it. I still need to be cautious with myself, but it’s difficult when I feel energy not to want to run outside and jump on the roof of my Toyota Camry and, I don’t know, sing Taylor Swift at the top of my lungs. Why? Because I can is all. That’s it really.

There is plenty more to say, about everything. We’ve got two years to account for! But mostly, I’m still me.

I hate to say it, don’t know how to say it, except to say it. I finally lost Monty, which I came close to thinking would never really happen. It was exactly a year ago next weekend. I’ve so much still to write about it, and him, and the whole thing. But the most I can say for now is that yes, it was very hard. But I realized that my fear of losing him was actually worse than the loss itself. When the time comes, you know. When you’re close with another soul like that, you know. Monty chose when and where, and I was simply there to pet his velvet ears and take in his smell one last time. OK, so I’m crying now. That happens sometimes and it’s OK. I think how wasteful all that fear of losing him was, when he was panting directly in my face!

Dogs are incredible teachers. Monty was next-level, and what he gave to me, in nearly every category of life, was precious. I really cannot believe how lucky I was to have such a dog as my own. It was a gift and a privilege to have him. I will never forget it.

It’s been a crazy two years. But I’m still here. Still Surviving. And Monty? Well, he’ll live forever ;)

Health, Happiness, Hellos & Goodbyes

Lost & Found

Published on June 23, 2021June 23, 2021 by Mary Gelpi8 Comments

But First.. Lost

I don’t remember what I did for Fathers Day 2020. Or Memorial Day or Cinco De Mayo or my brothers birthday. Much of the first half of 2020 feels like one long blur. Like a panoramic photo taken with the camera in motion. This is mostly because I was living what felt like the same day, every day, over and over. Each morning and the fallout that followed felt like an impossibly perfect cutout of the day before.

I can remember specifically the day before Mother’s Day, because my mom, who insists every year that we buy her absolutely nothing (a request that, every year, we reliably ignore) actually asked for a present this time: that I take a shower. Not because you stink, she assured me, I just know how badly you want one.

We both had to laugh at the request. Despite it being a painstakingly long shower that required way more effort than it warranted, and left me out of breath, I delivered. I owed the poor woman at least that much.

For all I cannot remember, the discouraged, scary and exhaustive moments stick out like thorns in my mind. I remember just how much I wasn’t doing–which was a lot. I practically memorized the lines on the ceiling. I remember how much help I required and how much I hated asking for it. I remember the enormity of things to figure out on my plate, and how impossible it felt to get any of it done.

Every morning, I remember dizzily staggering to the door to let Monty out, just so I could turn around and clumsily zig-zag back to bed and collapse like lead onto my bed. That was about as much as I could muster that first hour of waking. Summoning the strength for the crawl I’d have to make up the stairs for a coveted cup of coffee required a mental and physical preparation that you’d give yourself before running a marathon. Every morning was a marathon.

Once upstairs, I’d sit with my coffee, look at a sudoku puzzle in the paper and haphazardly scribble in a few numbers. Then the post morning crash would settle in like a fog. It seemed like I woke up just to begin a slow decline back to where I started.

Monty would loyally follow me back down the stairs. Back to bed, back to life from inside a window. He’d lay beside me and sleep, but was on all fours as soon as I started to gently kick the sheets off. I felt terrible for the life he wasn’t living, on account of me. I felt terrible in general, for all the things I wasn’t doing. But mostly, in a word, I was simply<em>lost. I felt as though I were floating in the middle of the ocean without a speck of land or answers in any direction. I can’t remember ever feeling so lost.

An exacerbated number of symptoms seemed to swallow me whole, and a new set emerged that we couldn’t completely explain: A strange and unprecedented struggle to take a full breath. To breathe without having to think about breathing. An ulcer that would cause extremely painful episodes— where I’d lay on my left side, eat a handful of Tums and say the Hail Mary until it’d finally subside. I’ve never eaten so many Tums in my life.

I felt so far away from actually living. I rarely knew what day it was, or cared. Tuesday, Saturday, Memorial Day, it all felt like the same stretch of time. It didn’t matter. Time lost its urgency and importance. Sometimes it felt like it hardly passed at all.

Other times I felt I could watch it fly right past me. As humans, of course, we can witness the literal time pass. I’d watch neighbors go for walks and mow their lawns, usually in awe. I watched family bolt up or down the stairs to retrieve something, without a second thought. My aunt Amy’s energy seemed supernatural. Holidays and birthdays would come and go, but I remained stagnant. I did my best to keep up with friends back home, but talking on the phone really exhausted me. There were signs and sounds of life all around me, but so little of it left inside. It’s hard to believe that was just one year ago.

On top of my excessively depleted state, we had moved to a new place–meaning I would require new, local doctors to continue treating me. It meant starting over, and having no idea where to begin when the doctor inevitably asked “So, what brings you here today?” That *task* alone was one of the most psychologically exhaustive and traumatic events in recent memory.

Every part of it was problematic, of course, because ME/CFS is a <em>multi-system </em>disease, meaning it requires a multitude of doctors to address the various issues it causes. It felt like failure, again and again, being rejected by doctors who wouldn’t even agree to see me. Can I blame them? Maybe not. One look at my health records and it’s understandable why the average doctor would scare off easy.

A few of them, including an overly-confident son-of-a-nutcracker, yelled at me. He said the doctors who had put me on pain medicine had actually put me in a Prison. I remember him pointing his finger accusingly straight at me, chastising me as though I were a child who’d done something terribly wrong. I walked to my car shamefully and lost it in the drivers seat for a good twenty minutes after that appointment. I was never going to convince these people to continue to regimen I was on. If that were the case, I was about to begin suffering a lot more than I already was. I felt so afraid of how much worse things could get without the appropriate care. The ulcer flared in response. A wind pushed me out further into the sea. Directionless.

The night after that appointment, I laid awake and replayed his words in my head. It struck me that the guy had it completely backwards. The pain was the prison. The pain caused immense suffering, left me at times incapacitated and unable to do simple things. It kept me indoors. The medicine is what freed me from some of that extremely restrictive pain. It allowed me some functionality and a semblance of livelihood.Some of my energy could restore itself once my body (and mind) weren’t consumed with fighting pain 24 hours a day. How could a pain doctor have such a concept so blatantly reversed?

The worst part was knowing that it didn’t matter. Whether I was right or the doctor was wrong, the battle wasn’t one I could win. He had the power, and my disagreeing with his professional opinion wouldn’t change the outcome. That’s a lot on a patients shoulders. If you’re unable to convince people of the help you need, most detrimentally doctors, you’re not going to get any. I was stuck. Lost again.

That doctor was adamant that a spinal chord stimulator was absolutely my best option—something that both of my doctors at home completely disagreed with. Wasn’t a piece of machinery inserted into my spine just as much of a prison, in the context of his metaphor, as oral medicine? It surprised me that someone who called himself a specialist couldn’t see any of this.

More and more the conditions of my life felt further out of control. I saw life around me, and I felt the tiny seed of my life that once was, but it was all totally buried by layers of circumstance beyond my fixing. The psychological damage was hardest to address, and I struggled to summon the energy it takes to keep your mental health in check.

This is where a little thing called support made such an immense difference in my life. While people around me helped in my search for answers–which on it’s own is encouraging itself–I was constantly offered a hand, a shoulder to cry on, an ear to listen, and extremely positive words. Not out of touch words, but reminders that I was not alone, and in the meantime while I tried to find my way out of the hole, family and friends and extended family were looking out for me. Even if I couldn’t see a way out, people like my mom would gently remind me that we’d always come through in the past, we’d always found our way out of the hole and we would do it again. Even if that meant one day at a time–which is basically the only way to go when you’re in survival mode.

I clung to those small whispers of hope and reminded myself I had emerged out of these hole before. I had to work hard to mentally process each day and not become buried by the story I told myself. It’s very easy to see the world as conspiring against you. I remembered the words of Paulo Coelho: “We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.” Despite the strong tendency to mentally unravel, I had to believe those words and sentiments like them. I would see the other side of this, I just had entirely no clue how.

Then again, we rarely ever do.

It was sometime in early June when extremely promising news arrived, thanks to a gargantuan effort on my sisters part that finally materialized. She’d managed to get me an appointment at the Bateman/Horne Clinic in Salt Lake City. This clinic specializes in ME/CFS, meaning I was finally going to see a doctor who I didn’t have to prove myself to as though I were fighting for my life in front of a judge and jury. It meant getting the care I so desperately needed. “July 13th!” my sister enthusiastically beamed over the phone. “You’re in.”

And just like that, I was found. I could see land again.

Could it be that simple? Well, It should come as no surprise, but it’s pretty incredible what a a doctor who specializes in the disease you have can do for a person. Imagine being diagnosed with breast cancer and being sent to dentist after dentist, each with conflicting advice but all sharing one thing in common: they simply don’t know how to help you. You’re in the wrong territory, and you can almost feel it as soon as you walk in the door.

Securing that appointment with Dr. Yellman of Bateman/Horne is ultimately what and who is responsible for me being where I am now physically–alive and actually feeling alive. I cannot believe what the quality of my life was just a year ago, and how much progress I’ve been able to make. It only reinforced to me that so much of the suffering caused by ME/CFS is completely unnecessary, because a lot of it comes down simply to access to the right kind of help. Most people don’t have it, and the fact that I can count the number of ME specialists in America on one and a half hands is one big reason why. If the remaining doctors haven’t even heard of ME/CFS, or worse, have drawn the wrong conclusions about it, you might as well be a cancer patient seeing a dentist.

It’s no wonder millions of people are struggling, mentally as much as they are physically, because we’re simply lacking appropriate and accessible resources.

It doesn’t have to be that way, and it’s something I plan to work hard on fixing. To conclude, for now, I should emphasize I am not cured, by any means. It still takes a lot of medicine and methods and monitoring to keep Humpty Dumpty together again. I still crash, battle migraines and pain, and my energy envelope is still not in large supply. But a lot of my health feels like it’s in my hands again, and the rest of it lies in the hands of a doctor who I trust implicitly– not in the guessing-disguised-as certainty from doctors who simply don’t know better.

I will write more on the major things that helped bring me back to life in the follow up. But I just want anyone out there to know who is severely struggling right now, you may be by yourself, but you are not alone. You may be 36 and living in your parents basement (ahem) but your life can still be meaningful and happy. Sometimes it can be hard to keep up your willpower to live when you have to fight so hard for it, and ‘living’ isn’t giving you a whole lot to hang on to. I’m just here to say, hang on. Not only can things change, the way we see ourselves and what’s achievable in our lives can change. All of these things matter. I don’t pretend to cIaim they’re easy, only that they’re possible.

Keep on keepin’ on. We’ll get there.

Health, Happiness, Alive Again

P.S. This young old man says hi…

Colorado, Crashed, Covid, Catastrophe

Published on May 12, 2020 by Mary Gelpi1 Comment

It’s hard to know where to start.

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

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

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

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

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

1-3 — That Red Arrow is the Part Where You DIE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1-1 1-2

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

Health, Happiness, Humanity

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

Hangers On a Ledge

Published on March 23, 2016March 25, 2016 by Mary Gelpi3 Comments

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers

Adjusting the Perspective on Pain

Published on February 7, 2016March 20, 2016 by Mary Gelpi10 Comments

What is it about Winter?

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider. And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here) They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS.

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Health, Happiness, Perspective

P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/

This Is Still a Life

Published on December 21, 2015December 22, 2015 by Mary Gelpi5 Comments

Oh hi world, I didn’t see you there. I haven’t seen you in weeks in fact! I’ve been in involuntary hibernation since Thanksgiving. Pardon me, I was knocked out.

This crash has been intense and I’ve been writing my way through like always, trying to understand it better. But this time I tried much harder to accept and approach it without the need to fix or change it. Without “fighting back.” I want to be clear that I’m not writing to answer the question of Why me? I’m not in that stage anymore. So I’ve tried to create a surrendered space to talk about it, where it’s regarded as part of the plan, where there’s no sense of unfairness or despair about it. It’s simply a fleeting, physical state that I’m meant to endure and examine closely among probably many other physical states I might encounter in my lifetime. I’ve tried to adjust my whole response to it, which has been more of a lack of response, or reaction, and more objective observation. Life between stimulus and response. Being sick and being OK with it, not attaching the personal, the story, the woe-is-me. I applied this approach to both my writing and my perception of the illness in real time, which has been interesting and challenging and often extremely helpful.

But I’ve sort of been a tortured artist with the writing–I keep editing and condensing and re-writing. I feel the angst that it’s never quite right, that there’s a concept just on the edge of being conveyed, like a mathematical equation I’m on the verge of solving. So I’ve once again ended up with 7000 words scattered across 3 notebooks, my iPhone, my computer, and one business card. Most of it has been exploring the same topic at different depths, and while some of it is good, I realized it’s just not meant for this space right now. Not to mention, my brain feels inside out lately–I’m a little fuzzy cognitively and I can’t gauge it. I’m either buzzing or stunted. But I’ve continued trying to make my words achieve what I feel inside and what I want to convey, staying very conscious about my intentions, which are that I don’t just want to write about being sick and my experiences simply because they’re true and they happened. I don’t want to start and stop at pain. I’m well aware of the danger in that. So I’ve been tinkering with these concepts, some of them seemingly contradictory: diving in deep into the experience where I can feel it completely, while also regarding it from a distance where I can see it inside of a larger context–which keeps the illness right-sized. I can recognize it as a part, and not a whole. I’ve gotten pretty close to finishing it, I think. But it’s been arduous and probably redundant and my mind is still spinning, even as I write this now.

Anyway, I’m going to start from scratch today and try to relax about the outcome. A good friend said not to worry about lengthiness, just to keep writing and trust that if people don’t want to read it, they won’t. That’s so true, duh. Thank you friend, I’m just going to write some broad things out, and whether good or bad, hopefully open up some space in mind for some fun topics, like my exploration of Hallmark and Lifetime Made-For-TV Holiday movies, and also a note about my 12-foot real Christmas tree that refuses to drink water. But it lives on!! Tiny miracles.

My health was already on pretty shaky ground leading up to the Holiday. Thanksgiving Day was great, ate good food and had some fun reunions with old friends, but it was long and cumbersome. I could feel myself subtly hitting physical limits along the way, but I pushed on anyway. (I include the socializing that happens as part of the exertional strain, even though it’s enjoyable, it always costs me something physically the next day.) It was a Holiday after all, and I could sleep it off tomorrow, I thought. Unfortunately, I was flattened–handed over fully to the illness overnight while I slept. I woke up to the dreary and unfamiliar light of 3:30 pm pouring into my room on Friday. It disoriented me further as I felt an overwhelming weakness blanketing every part of my body, down to my fingertips. I laid there an hour before making a move, and once I did I felt keenly the severity of my condition. Moving was not easy and wouldn’t be for a while. I knew this wouldn’t be something that I could sleep off in a day or two. Shit.

Since then, I’ve been on a roller coaster of physical states, mostly at the mercy of this crash, and life here at the farm has been chaos. For a few weeks I’ve been enduring a symptom I find the hardest to cope with–bone crushing weakness. Spiritually, emotionally, physically, this one challenges me way more than the others. It leaves me the most powerless. There’s nothing to do for this symptom. When it has you, it has you. Its’ demands come in this perverted form of requiring that you do nothing–which is basically the reverse of our instinct in response to a ‘problem.’ It requires that you lay still, it means you’ll need a lot of extra help for things you’d normally do yourself and never think twice about. It means playing the waiting game and not knowing how long you’ll play it, without allowing impatience or succumbing to anger or despair while living through the thick of it. (Those reactions only makes me weaker.) There aren’t pills for weakness like this, not exercise regimens or quick fix solutions. There’s a lot of being stationary, quiet, often remaining in one place or one room for a solid chunk of time. Sometimes it’s a messy room, and you have to let that go. You have to let the dishes go. Truthfully, the whole thing is a crap ton of letting go. You have to achieve cleanliness mentally, because there ain’t no way you can vacuum right now. It means putting off the long list of things you’d thought you’d do, and finding ways to achieve a surrendered state of mind despite the external world around you appearing to unravel at nearly every seam. It touches everything, seeps into every corner, means nearly anything that isn’t necessary in the moment must be put on hold or go in the ‘burn pile’. You have to find a way to remember that despite all the can’ts and don’ts and no’s, somehow you still have everything you need in the moment you think to ask.

The only times I get overwhelmed is when I try to conceive everything at once, or I think of the future, as proximal as the one five minutes away. And the root of this is fear mostly, fear of ways the illness will hinder the things I have to do. Yet the future always comes and I always survive it, the essential is always achieved one way or the other. The non-essentials fade and soon you hardly notice they’re gone. When I stay extremely mindful of right now, tending to exactly and only the task right in front of me, I truly feel fine. I feel positive and at ease instead of buried, powerless. I think, all I have to do is drink this glass of water. I don’t even have to consider what will come after. It will come and go despite my concern. That’s where my navigation of this crash has felt like a small miracle. Maybe for the first time, my spirit has succeeded and carried me through the really difficult times. I’ve often been able to observe what’s happening to me at a distance, without becoming crushed by what I see. Or angry at how I feel. I feel really crappy, really weak, and so I find a good reason to be really weak today. They exist! They just require an adjusted perspective. In this way I’ve had the crash more than it has had me, and that has made a huge difference.

To whom or what do I owe this miraculous capability? Well for one thing, my mom. I should mention it’s not just my spirit that’s carried me, because it’s my mom who has physically carried me. She has tended to my needs when I’ve been incapable. Not to mention that she has a prayer chain halfway around the world dedicated my wellbeing. Just knowing so many people have dedicated even a moment toward healing intentions and thoughts for me is both humbling and energizing. It makes me feel hopeful, and that hope gives way to optimism, grace, surrender..they’re all there, and this situation constantly brings to light the choice I have in how I’m going to receive my circumstances. Whether or not I will accept and recognize all the treasures that lie beneath the hard stuff on the surface.

I believe there are always incredible gifts waiting at the heart of our struggles–and this time I was able to find them at clutch times. They don’t come from me, but somewhere else more eternal. I suppose the gifts materialize when we open ourselves enough to receive them– to the vulnerability that comes with accepting help in the first place. Our silly human egos could easily interpret the reality as I’m not enough. I should be able to do this alone. Blah blah blah. But to simply acknowledge the truth that yeah, I could really use some help right now if I’m able to emerge through this in one piece, the disappointment of need or felt inadequacy melts and grows into a ginormous humbling gratitude in acknowledging that I have help at all. What a reassuring reminder to know that I don’t have to do this alone. So why would I? I have help! It’s sortof like staying in a miserable marriage for 20 years all so you can say with pride that you’ve been married for 20 years. It may momentarily impress people, but you’re the one who has to share a life and go to bed every night with a person you may not even love or like! Sometimes we go after things because we like the sound of them, or the image they create. But the real meat of life is on the inside, in the everydayness of how we live. Not a 20 year anniversary, but how you love and treat someone through the mundane parts of life together. Talking about dentist appointments or discussing an article in the newspaper–how did you speak to one another? Not that you beat or survived illness, but how you treated it day to day and through the challenging times, how you treated those around you, and what you made out of your experience. Make it count? Or just get through it so it you could quickly forget and attach to something else. I don’t know. I’m rambling again.

The realization of some of these things makes me smile and cry at the same time. I am so encouraged and fulfilled by all the love and help I’ve received, and it’s come in so many different forms, all of them special. I’ve had incredibly healing and inspiring conversations with people I’m very close to, and each one of those talks builds me up higher than before. What a hushed relief surrender is–and a gateway emotion at that. It opens the door to a surge of mindfulness that illuminates grace, friendship, love, thankfulness, all the good in my life that I’m blinded to when I’m distracted fighting something I most likely can’t control.

It’s difficult to articulate, but sometimes I zoom out from my life, like a camera zooming out into space with earth at the center, becoming smaller and smaller. When I do, lately I see a small figurine of myself living inside the palm of two big porcelain hands cupped together, like that of a statue. I see that I’m being held, and in the image, I feel watched over and protected, both from a far off place and a space deep inside. What an amazing treasure it is, to reach out your hands in a time of real need, and to have someone/something grasp them on the other end. For the most part, it’s my moms hands which have reached back. It’s she who provides. Her help, love, and attentiveness is immeasurable. As equally as my spirit, she has done the labor of care that being sick this way requires. And it’s not an easy job, though she’d never let you know that.

No doubt this has been painful and overwhelming for her. She has said that seeing her child in pain is far worse than having it herself. I’m very aware of this, and it’s even more reason that I feel the need to voice out loud what has been burning true through all of this– That it’s all OK. I am OK. I’ve felt strangely at peace through the tough stuff, and I know it’s on account of her and other loved ones in my life who’ve given so much of themselves just to try and lighten the burden. I am continuously strengthened by these acts. I want to assure her, because I feel it in my weak little bones, that this is all leading up to somewhere great. I’m certain that I am just where I am supposed to be. I don’t feel like any of this is random or cruel, but that it’s the work I am meant to do right now, and I accept it with fullness and eagerness. I know there is greater reason and payoff that we can’t see yet. But knowing it’s there waiting helps to greet all these “stresses” with an assured openness. Getting there requires work, but it’s work that I’m capable of; important work that doesn’t require a physically fit body in order to happen. It will be beyond worthwhile, if we can only get through this moment. Then the next one and the next one.

And the good news is we can! I can, I have. And I will continue to. Her enormous and powerful love has helped put my inner self on a plain where I am capable of moving forward and growing from this. For that I owe her…well, everything. But I know the only payment she would want is the certainty that I’m not only OK, but that I’m happy and that I haven’t forgotten the novelty of what it is to be alive. And if you’re reading mom, I haven’t. I experienced incredible moments, inspirtations, and laughter, often alone with Monty in my messy living room! This is it right now, and I’ve found immense joy in it anyway. Like you said, This is a life, too.

I know this doesn’t solve the many problems we have right now. There are so many other things that haven’t gotten the attention they need, important tasks that had to go un-done, financial burdens that we have to figure out. And most of this is on account of this all-encompassing illness that touches everyone around me, especially her. But I do feel that soon things will change for the better, that we’ll get help where we need it, we’ll complete everything that’s gone undone. I know one day we will smile with relief at the memory of trying, chaotic times like these, where everything was falling apart. And yet I know these are what will become the foundation for some amazing things to come. When they do, incredible things are going to start happening. I can feel it!

For now though, a breath. A glass of water. Rest. Feed the dog. Rest. Send a text. Pills. A breath. Rest. Small tiny moments. One foot in front of the other. I feel really weak today and I can’t do a lot physically, so I’m going to find a good reason to be weak today. Writing, reading, listening compassionately to someone. Photographing my dog because I love him so much I smile just watching him sleep. So many amazing things require so little of us physically. Navigating each moment with quiet consciousness, I know not that everything will be OK, but that it is OK now. And I revel at the momentary freedom in that. I’m grateful just to glimpse such a powerful truth. Today is heavy and rainy outside, there are dishes in my sink and I’m too weak to do them. But I’m listening to Christmas music, I’m admiring my ridiculously huge Christmas tree and the soft nostalgic light it casts on my living room. And I’m reassuring Monty who is staying unnaturally close to me (following me into the bathroom and squeezing between the toilet and the wall) because it’s thundering outside and for him this equals imminent threat of death. This is my life today, and many days, and I’m living anyway! I’m enjoying it. I like the rain. I like quiet days. I also like singing obnoxiously loud to Mariah Carry Christmas songs. Monty and I, we’re fine over here. A sick life, but still a life. Regardless of physical outcomes, All will be well. But even better, all is well now.

Thank you, all of you, who have kept my spirit so alive! What all of you have contributed in your own small ways matter immensely to me. I feel extremely connected to the world and am humbled by the love I’ve received. I’m excited for the ways I plan to pay it forward.

Health, Happiness, and This Life, Too.

The Grays

Published on December 7, 2015December 9, 2015 by Mary Gelpi3 Comments

The Grays: As in, A Case of ‘The Grays’ is an amorphous cousin of The Blues, less concrete and more insidious. Where The Blues are a despondency with traceable roots, a break-up say, the source of The Grays is less clear, confusing the host and lengthening the distance he feels between himself and the world around him. It’s a removal of sorts. It doesn’t make everything feel bad as much as it makes everything feel the same–it removes ‘specialness’ casting all things in the same ordinary light. It becomes hard to see yourself clearly, to feel what direction you should go in. A person with The Grays can’t point to a particular occurrence and say Aha! This is the source of my sunless nature! All he can say is that a colorless film has covered his eyes, rendering all choices, all feelings, all consequences the same. It makes trying and not trying essentially the same–it dissolves meaning, in other words. Love, apathy. Good, bad. Going, staying. Same, same. Does he want an apple? Sure, he’ll take an apple. But it would be just the same if he didn’t take the apple. Eating it won’t bring him any satisfaction, and not eating it won’t make him wish that he did. Take it or leave it. Take anything or leave it. Same, same.

Correct, This is what I got when I googled the word Gray. You’re welcome.

I can’t say exactly what kicked me into the slump I have named The Grays. I suspect it had a little to do with the crash I’ve been in for a few weeks now and from which I am still not recovered. I know that often when my body gets overwhelmed for a long period of time, eventually ‘it’ seeps into my mind, my emotions, and I feel psychologically overwhelmed as well. I’ve been short of breath on my feet lately. Dizzy, heavy, and extremely weak, particularly when I try to stand or walk or move around. My legs feel like cemented blocks that are so heavy to pick up and put one in front of the other when I try to move, that I mostly haven’t. It’s been that way for weeks now, and staying sedentary too long would make anyone restless I’d guess. It gets old having to put off things until tomorrow that you already put off until today, over and over and over. Your surroundings start to grow stale, and wanting to change them but being too sick to get out of the house becomes a whole other challenge. Of course, this isn’t my first rodeo. I’ve been through crashes much longer and worse than this, and I’ve become pretty good at riding out sick times without giving in to despair. But that’s the thing– this isn’t really despair. It’s not heartbreak or grief or anger. It’s more like a hole where my feelings are supposed to be. A lack of feedback, a lack of identity, an inability to see myself in the world and where I fit in it. It’s this dimming effect on my surroundings and myself, blanketing the normally vibrant world in the same, colorless hue. Gross! This will not do.

Another entirely meaningless photo that came from googling gray.

The worst part about the Grays is not being able to easily or immediately pinpoint their cause, making it much more difficult to navigate and fix. It also usually means feeling bad about the fact that you feel bad, because you feel like there’s no real reason, or maybe no good reason, that would explain the source of your gloom. So you feel more bad. Have you ever cried and not really known why? It’s the worst! You start crying more because you’re like “Why am I even crying right now?!” Which results in a louder eruption of wailing, sometimes causing you to snort and sniffle, which might lead to a weird outburst of laughter, highlighting the absurdity of it all but then segueing back into loud sobs and a near certainty that you must be insane. It’s an emotional disco party! The funny thing is how absolutely lost I can feel in the midst of crying, buried and convinced there is no way out of the state I’m in. But almost immediately afterwards, in those moments of recovery where you’re sniffling with a tissue and taking those shaky, post-sob deep breaths, I always feel relief. I feel incredibly lighter and way more capable of finding resolve. There is always a rejuvenating sense of clarity–even if I’m still uncertain about the cause of my feelings. I can see myself again. I can see the other side.

I think sometimes the Grays emerge because I endure pain and I’m not always conscious that it hurts. Sometimes things make me sad unconsciously and I’m not so aware of them of them, or I just don’t understand why it’s painful, so I end up not giving it enough attention. I brush it off or just move on the next thing. But you can only do that for so long. There is always a breaking point. The pressure builds, the feelings need an outlet, and so there you are crying your eyes out for an hour after finding a dead mouse in a mouse trap. (True story)

But couldn’t it be said that I’m just a huge animal person and given that even dog food commercials make me cry it wouldn’t be unreasonable for me to cry at the sight of a dead mouse? Maybe. But I don’t think it’s that, completely. All things convey life and death in their own way, and they’re all reminders of the strange contract we had to sign. But I think it’s simpler than that and I’ve been sort of dense about it. I think the truer source is that sometimes, being sick for so long really just gets old some days, and I don’t feel strong enough to smile about it and say that I haven’t given up hope. (I haven’t, and I really never will.) But some days, maybe it’s OK to just admit that things are really hard right now, that life is getting you down, that you wish you could change the things you know you cannot change. That you’re blowing it with the Serenity Prayer! Perhaps the Grays are a result of not giving our inner selves and feelings enough examination. A voice. It’s not that we should complain and whine. It’s more about acknowledging what is true despite the vulnerability it will highlight. Maybe sometimes you just say it out loud and look it in the eye and admit hey, this hurts. This is hard. I need some help. I think voicing the feelings and allowing yourself to be sad without immediately trying to fix it, helps open up a space between you and the pain, and within that space is where you can start to understand and move through it. Awareness helps bring even the smallest amount of light to whatever hole you find yourself in, and that light illuminates what’s on the other side. Finally, you start to see a pathway out. But it means going through first.

The challenge is always to express and validate the feelings without succumbing to them, getting stuck in your story. The opposite of dismissing the pain is letting it take over, using things that have happened as a crutch for negativity or allowing them to defeat your hope and enthusiasm. This is what encourages the victim mentality, something I work consciously to stay away from because it seems unsettlingly easy to go there and stay. It takes hard work to locate and live in the middle of these two roads–and I’ve found myself lost many times, too far down one or the other. Saying it and feeling it too much, letting it dictate too much of me. Or convincing myself it’s not worth talking about, to deal with it alone, not asking for help when I actually need it. Finding my way to the middle is where I see things the best. I can see my life from a distance there, unencumbered by feelings about it. I can see my true self without my opinions distorting it. I can reconcile who I am with the kind of life I want to live. I think so often the source of my pain is that I’ve convinced myself I can’t do or achieve the things I want or am meant to because certain things, like being sick, are inhibiting me from achieving them. But when I reflect deeper about this I think the opposite is true. I think what I am meant to do and be is actually born out of and possible at all because of these very unique conditions–the ones I didn’t choose. The ones that were not a part of the plan. Perhaps they are in fact what’s allowing my real purpose to unfold, and not hindering it at all. Maybe all of this comes down to a simple shift in perspective: stop seeing things as road blocks that are actually opportunities.

Of course, it’s always easier to write and say these things than it is to practice them. I know that words only have so much power, and just writing them down doesn’t make them any easier to live by. But writing has always been a relentless reminder of what is true and good in my life. It helps sort out the real from the meaningless. It seems to function as a mechanism of discernment for me; a sifter of stories from truth. Thomas Keating wrote that “Discernment is a process of letting go of what we are not.” Sometimes I find peace in sitting down to write, because it forces me to come to terms with the truth without feeling defeated by it. Like Nepo says, The instant fish accept that they will never have arms, they grow fins. Sometimes it helps me remember that despite being sick, I can still become who I am meant to and do the things I find most important.

I find that opening myself to the vulnerability of what might be revealed, I usually unlock some truth when writing that I’ve forgotten along the way. It forces me to look past the petty things that sometimes I lean on too heavily on. It encourages me to examine the deeper meaning of things that on the surface can seem painful without a purpose or value. I am often surprised by what emerges when I sit down to write–it’s rarely what I intended or consciously planned to address. I know it sounds a little pie in the sky, but often the words don’t feel like they’re coming from me exactly. Sometimes I don’t even totally understand them. I feel more like a medium thru which other sources are using to reveal more important things than whatever crap I planned on. This is when I understand our passions being called “gifts.” The words are not mine– More than writing well, my job feels like listening well, and then very carefully relaying whatever’s coming through. It’s a sort of prayer, therapy, and mediation in one.

I think the connections and truth and awakening that writing provides might be what all our passions do for us (and the world) on a deeper level. Gardening, physics, furniture making, piano, whatever–they’re all devices that help us see the world more clearly and to feel distinctly our unique “spot” within it. They’re a way to figure ourselves into the cosmic equation and have it equal One. They are reminders of our humanness. All I know is that the longer I go without writing, the further I feel from myself, and the more distant I feel from the world. Lost this way, it becomes much harder to find that path to the perfect middle where I can myself and the world with the right set of eyes.

It might seem surprising since I tend to do it a lot, but I am always extremely cautious to write about the dark stuff. I always hesitate to post during the hard days, not out of fear really, but more because I know that what I give my attention to is extremely important both in my physical and mental health. I have to be careful about where I direct my focus. My hope and my experience is that writing things out helps to reveal things bigger than the pain. It brings a level of consciousness to wherever I am, and that helps see my reality better. My goal is always to find something good to take away even from the crappy times, because for some annoying reason, pain is extremely educational. But in order to grow from it means we cannot stop at the pain. That’s where we start–the reaching out, sharing, crying, and writing all provide a way to feel and understand it, and also to keep moving forward. I’ve basically done all of those things in the hours I’ve spent writing this. So thank you for letting me go on for so long. Whoever you are. Because you know what? I don’t feel so buried by these Grays anymore. I haven’t succumbed to stagnancy and I feel a space between the pain and me. I feel more connected to the world, and I’m starting to see it in color again.

Health, Happiness, Away from The Grays

An Open Letter to Myself, To Be Read 10 Years From Now

Published on November 5, 2015November 5, 2015 by Mary Gelpi15 Comments

Dear future self,

Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.

For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.

But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK. I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.

Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue. That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.

It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment options as an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.

Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.

And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.

But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.

Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.

Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.

There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.

This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.

See you in ten years,

Mary
And Monty

I Have a Time Machine

Published on September 18, 2015September 19, 2015 by Mary Gelpi2 Comments

Here’s a poem I really like. It’s by Brenda Shaughness.

I Have a Time Machine

But unfortunately it can only travel into the future
at a rate of one second per second,

which seems slow to the physicists and to the grant
committees and even to me.

But I manage to get there, time after time, to the next
moment and to the next.

Thing is, I can’t turn it off. I keep zipping ahead—
well, not zipping—And if I try

to get out of this time machine, open the latch,
I’ll fall into space, unconscious,

then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.

There’s a window, though. It shows the past.
It’s like a television or fish tank

but it’s never live, it’s always over. The fish swim
in backward circles.

Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,

and sometimes like blackout, all that time
wasted sleeping.

Myself age eight, whole head burnt with embarrassment
at having lost a library book.

Myself lurking in a candled corner expecting
to be found charming.

Me holding a rose though I want to put it down
so I can smoke.

Me exploding at my mother who explodes at me
because the explosion

of some dark star all the way back struck hard
at mother’s mother’s mother.

I turn away from the window, anticipating a blow.
I thought I’d find myself

an old woman by now, travelling so light in time.
But I haven’t gotten far at all.

Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.

Pretty great no? It’s funny how some poems feel like they were written just for us, as if the author knew exactly where we’d find it and what it would do to us, hitting us in the gut in a coffee shop! Or heart. Our insides somewhere. I love this part of poetry. How fast it is. How in just a minute or two you can cosmically connect with a total stranger, dead or alive, and feel more seen or heard than you have by actual people. That’s powerful stuff!

I’ve recently been reading Anne Sexton–her history and her poems–and both are intense and curious and heartbreaking, but deeply resonant and I’m eager to read more. I plan to order someones cheap, used copy off of Amazon, and hopefully I’ll find parts that are underlined or circled with little notes in the margin. This is one of my favorite perks of reading (used) tangible books as opposed to electronic, kindle types; the human mark on the pages. They’re like little visceral clues of other life, but exceptionally personal. More confidential than say, finding someones grocery list, although there are treasures to find in that too. Maybe I am just an alien from another planet seeking signs of life and getting way too caught up in casual life leftovers. But somehow I feel less alone when I see a persons scribbles to the side of a page. Their unique handwriting next to that flat text against the page– It heightens the effects of the words. It brings the whole thing to life. It always makes me think that someone else sat alone somewhere, reading these same words and they were compelled enough to write themselves. Maybe it was there way of writing back, hoping someone somewhere along the way would read what they wrote and feel something. I don’t know, but there’s just something…nice, about that. Anyway, I think I will start with The Awful Rowing Towards God. Or maybe Live or Die and go from there. Did you know that Anne Sexton had two sisters, and one was named Elizabeth Jane, and the other one was named Blanche Dingley? BLANCHE DINGLEY?! I wonder if Elizabeth Jane gave Dingley shit about that.

Health, Happiness, and Poetry. Pure Poetry.

Under Water.

Published on August 31, 2015August 31, 2015 by Mary Gelpi16 Comments

I need to spend more time under water.

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

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

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

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

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

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

Health, Happiness, Thirty One.

Haikus From A Crash

Published on July 30, 2015July 31, 2015 by Mary Gelpi4 Comments

Spent Saturday night
Forgetting. Acting my age.
I’m young, I can dance.

For four nights, five days,
Never left my best friends bed.
(Hospitality.)

This tin-can music
On hold with the pharmacist
Tries to get me down.

Robot voice thanks me,
Your call is importan–Click.
Avoid urge to die.

Doc: Where is the pain?
Head, Muscles, Joints, Skin. Constant.
Doc: Are you depressed?

Congratulations!
Didn’t go to med school but,
I’m my own doctor.

The universe yawns-
Striving for life I don’t have,
I’ve become Facebook.

I cried when the maid
Killed the spider in my room.
Alone, things get weird.

Can’t forget him now–
Broke up just in time to find
Ringworm on my thigh.

A measure of will:
No one needs you anymore
Do you feel alive?

Monty at my side
Asks for nothing the whole day
Meet visceral love.

Tail wags in his sleep,
Watch his belly rise and fall
Love, you make me weep.

If Haiku rules were
Seven-Five-Seven instead,
Would I still be sick?

Bzzz. Thud. Bzzz thud bzzzz
Angry bee against the door
None of us get out.

Sad signing the forms
Which say I’m incapable.
BUT IM SEXY YALL!!!

Day 6, I’m alive.
Under water asking if
Dancing was worth it.

I should know better,
But I remember dancing,
Don’t remember price.

Health, Happiness, and Haikus.

*Shout out to Newman for haiku inspirations and continued decency in a perverted world.*

A Baby Was Born

Published on July 24, 2015 by Mary Gelpi4 Comments

I really didn’t think we were going to make it. Amelie’s due date was June 18, and my mom and I were scheduled to arrive on the 16th which, in hindsight, was cutting it rather close. She started having contractions on the 14th and by the next day I was convinced we’d never get in there in time. I prayed that he’d wait for us but it was pretty clear by then that the baby would arrive before we would.

Somehow, despite multiple airplane delays and three days of threatening labor, my mom and I arrive to California, pea still in the pod. He waited for us after all. We arrived late, and everyone was tired, mostly Amelie. As we all turn in for bed, I tell Amelie and Keegan to wake me up if anything happens during the night. I don’t want to miss a thing. I am weirdly excited getting into bed, the way you are on Christmas Eve as kid. I finally get to witness the miracle of life. Score.

Roughly 5 hours later, still very dark outside, I wake to Keegan whispering in a firm voice at my door. Mary. Mary! I am still half asleep, Wha? I mumble. Her water broke. We’re going to the hospital. Yes!! This is what I had waited for. I knew something would happen tonight! I dressed quickly but hesitate a moment about what to wear. Are jeans appropriate labor attire? In my peripheral I spot Amelie, walking ever so cautiously down the hallway toward the stairs. She’s in a bathrobe, moving like a ghost, groaning in pain. Are you OK? I ask, dumb question probably. Hurry, she says. We need to go. I quickly put her arm over my shoulder and we walk gently in unison, a conjoined ball of sisterhood floating down the stairs. Where’s Keegan? She asks. I assure her he’s coming. I lie, I have no idea where Keegan is, but I assume he didn’t run out on us.

We walk out onto the driveway, the tiniest bit of dawn peaking at the horizon. Amelie is barefoot. I help her into the front seat of Keegan’s man van. I climb in the back but notice there are car seats on both chairs. Obstacle! I wedge my large butt into the bigger one, which doesn’t really work, so I sit perched up on top of it with half of me hanging off the side. Just as she’s about to ask where Keegan is again, we both see him, a spectacle headed our way; Keegan, running out of the garage as the door descends on him, holding a giant blue rubber ball in the air with both hands, as though it’s a trophy. What is THAT? I ask. Amelie tells me it’s some kind of birthing bouncy ball thingy that helped progress her first labor. But I don’t need it this time! she says, but Keegan is already stuffing the large balloon ball in the backseat, trying to wedge it between me and the two carseats. It’s making the rubbery noise that balloon animals make when being configured. I am laughing but only to myself. I don’t know if laughing is appropriate yet. You never know! he says, and gets into the driver seat. As he starts to shift the car into drive, Amelie stops him with a request: OK, I need you to go slow over the bumps and turns and stuff. But seriously go fast because I don’t think we have a lot of time. I hear Keegans signature cackle. OK, he says, hitting the gas, but easing down the curb of the driveway like a champ.

Now we’re driving fast on the California highway and the roads are all ours. Amelie tells Keegan to call the doctor on the way. I am rubbing her back like a boxing coach, but she says it feels good so I stick with it. Keegan talks to a woman on the phone, which then Amelie takes from him. She tells the woman she’s “In full blown labor”– A phrase both her and Keegan will use numerously in the next hour. This also makes me laugh. Please make sure he knows I’m in full blown labor this time. Keegan has been running the red lights, but now we approach one and there’s a state trooper in the lane next to us. Planning to run the light and then continue speeding, Amelie tells Keegan to let the guy know so he doesn’t pursue us. Keegan rolls down his window and the trooper does the same. Keegan: My wife is full blown labor. Cop: OK. Keegan: I’m going to run this light and then speed. Cop: OK. The light turns green and we speed off in the van. Dude couldn’t have cared less.

I notice Amelie is taking really short breaths from the pain. I remind her to slow them down and try to exhale through her nose. It actually works, she begins taking good breaths. I don’t totally know what I’m doing, but I know deep breaths are better than shallow ones. And they say it in all the Hollywood labor flicks. I rub her shoulders and the big blue ball drifts over to my side again, crowding me back there. I laugh to myself again. I know I will remember this car ride forever.

At the hospital we get Amelie into a wheelchair outside and Keegan throws me the keys to go park the van. In the wheelchair Amelie informs the nurse that she’s in full blown labor and instructs the nurse to run. The nurse reminds Amelie that she is going to be OK but that they aren’t going to run. By the time I get the car parked and up to the room, she is being hooked up to IV lines and monitors with all kinds of wires emerging in every direction. There is a surprisingly large number of staff hurrying in and out of the room, performing respective tasks. Amelie has one concern; the epidural. I’m ready for the epidural as soon as possible. Can you make sure they know that? That I’m ready as soon as they are? They are asking her a ton of questions and typing in answers or writing them on a chart. I imagine that she wishes the questions would stop. I’m familiar with this position; being in pain, needing help that only someone else can provide, but first having to answer question after question–none of them seeming more important than the pain. The nurse tells her as soon as she’s checked into the system, she can have the epidural. The Holiest of Holy’s.

I am standing to the right of the bed, watching a machine hooked up to her which monitors the contractions. It looks like a seismograph. It strikes me what an interesting device this is. A qualitative way to witness someone else’s pain, to measure it even. This part sticks with me. I try to talk her through the bad ones. Since I can see them peak and descend on the monitor, I’m able to tell her when the worst part is over. I remind her to breathe deep. There’s not much else to do now besides refill cups of ice, which Keegan and I take turns with. It’s just like the movies. Amelie informs another nurse that she IS ready for that epidural, just so she knows.

Finally, the last of the questions are answered, and the man with the miracle appears in the doorway. He is glowing yellow and angels sing in harmony as he makes his entrance. Amelie perks up. Absurdly afraid of needles normally, she couldn’t wait for this one. It only takes a few minutes, and then the magic starts to work. You can tell because Amelie has color back in her face and relief in her eyes, as though she can suddenly breathe again. Not to mention she’s smiling, and much more chatty.

Now everything slows down. Keegan and I take a nap. I guess numbed up Amelie continued to labor. When I wake up a bit later, my mom has arrived with coffee and food. We eat and re-energize and prepare for the big show. Just a couple hours later, to the nurses surprise, Amelie is eight centimeters and the time has come. This is it! Yeah! The only problem is that the doctor is not here yet. He’s on his way from another hospital, but he is in traffic. Note: California traffic is different than Louisiana traffic. My mom and I sit at the bay window, on the lookout for Doctor James as the nurses quickly turn the room into a saran wrapped tent. There’s another doctor there in case hers doesn’t make it, but Amelie likes sticking to plans. It’s kind of her thing.

The nurse tells us he drives a gun-metal grey sports car. Of course. No sign of him yet, so my mom and I start singing Amazing Grace aloud in a two part harmony. She taught us this years ago– something about the vibrational energy of that song. We have sung it ever since when we’re in a bind, and somehow it always comes through. There we are, Amelie trying to hold off pushing, the nurses preparing the room like busy birds, and two women at the window singing in decent enough harmony, (I may have been a bit flat). By the third verse, a small silver sports car pulls up and a tall doctor rushes out. He’s here!! We all cheer. Amelie looks like she’s about to have a baby.

The doctor can barely get his blazer off and the scrubs on before she’s on her second push. I stand to the side between the doctor and Keegan. I even hold a leg! It all happens really fast. On the third push we can see his head. It is crazy. Amazing. Five pushes later, he is out. He doesn’t cry right away and the silence is paralyzing. I am worried but don’t say a word because neither the doctor or nurses seem concerned. It feels like forever but was probably four seconds. As Amelie gets both hands around him and brings him to her chest, he finally cries out. That weak, pathetic, entry level cry. The cry of alive. As soon as I hear it, I start to cry too. I never used to be emotional like this. But it feels good. Happy tears. He doesn’t even cry long. He gets swaddled and passed around to everyone like a perfect soft package. I watch his parents hold and love him, both grandparents, and then it is my turn. I can almost feel the love he’s been given already radiating from him. I think about his entrance to the world–how every baby should be this lucky. He’s alert, blinking slowly as he takes it all in. How he can already smell so good, I have no idea. I hold him and cannot fathom that any of us were ever this small, this helpless. Why do we ever convince ourselves we are meant to do this alone? Holding him I feel solid relief. Not just that he’s OK, but that the world is OK. In this moment, he embodies the world. Everything will be fine. He’s here. It’s perfect.

Health, Happiness, Happy Birthday James.

We Can Do Better.

Published on June 4, 2015June 4, 2015 by Mary Gelpi14 Comments

I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”

Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.

I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.

Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.

I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:

Totally! It’s like I’ve never met anyone with Diabetes who can eat copious amounts of sugar. It’s obviously bullshit!

Em, you don't have this. -Mary — Em, you don’t have this.
-Mary

This person actually doesn’t believe in Carpal Tunnel so I don’t know where to go from here.

I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.

So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?

The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless, by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.

I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.

The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.

It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.

Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.

The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings. To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.

Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.

Health, Happiness, Better.

Time To Kill

Published on April 29, 2015April 30, 2015 by Mary Gelpi17 Comments

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

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

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

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

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

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

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

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

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

Health, Happiness, #SickPride

Who’s In?

Published on March 31, 2015 by Mary Gelpi5 Comments

Sometimes I think of posting this at my local coffee shop. You know, to mix things up.

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

Published on March 10, 2015March 11, 2015 by Mary Gelpi6 Comments

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

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

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

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

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

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

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

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

Happy Birthday to my Dad: THE ORIGINAL HIPSTER! — Happy Birthday to my Dad: THE ORIGINAL HIPSTER

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

Health, Happiness, Happy Birthday!

The Cusp

Published on February 4, 2015February 5, 2015 by Mary Gelpi15 Comments

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

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

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

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

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

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

Guess we're going South. Cool. — Guess we’re going South. Cool.

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

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

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

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

Health, Happiness, the Edge.

Holiday Hangover

Published on January 5, 2015January 5, 2015 by Mary Gelpi3 Comments

January 5th! That means I survived. And you survived. Now it’s 2015 and the recovery begins. A lot of things begin.

I’ve always been an annoyingly enthusiastic Holiday person, and I begin playing Christmas music and watching Elf on repeat the day after Thanksgiving basically until someone stops me. When I was a kid it meant presents and a much-needed break from school. In my OLD AGE it means reuniting with a family that live across four different states the whole year, save for one week in December. A week where we all fight for my moms attention with either boasts or ailments and both seem to do the trick: Mom did you see this article I was mentioned in? Hey mom does this mole look cancerous to you? Should I see a doctor? Is this scabies? We always engage in some sort of game whether it’s cards or Scrabble or Monopoly, and typically it ends in either a tiresome debate about rules until someone gives in or an all-out wrestling match if it’s late and there’s drinking involved. Usually one Gelpi ends up in the hospital– not because of wrestling but because we are a weak, weak gene pool of humanity and besides our humor we all share malfunctioning bodies, respectively. I’m not the only one! This year it was Nick, but he’s OK for the most part.

Making and carrying out a plan with our family during the Holidays is like a hybrid game of Guess? and Sorry! We aren’t on time, we aren’t organized, and worst of all, we laugh when things go wrong. It’s just our nature. I think once you witness enough tragedies in life you to learn to laugh, even during stressful times. Maybe especially during stressful times; a defense mechanism of sorts. My brother Doug is best at this. Any time things get tense, Doug is usually laughing or doing something so ridiculous that few of us can keep a straight face. Like subjecting someone to a Dutch Oven while laughing hysterically loud even though it’s TOTALLY INAPPROPRIATE. Or in this case, playing the original Tetrus music by ear on Harlow’s cat piano.

He's single ladies... — He’s single ladies…

Anyway, a major exception should be mentioned here, and that is my sister, Amelie. Amelie is structured, on-time, and enjoys making plans and sticking to them. Was this a gene she was awarded that the rest of us missed out on? Maybe. Unfortunately her orderly ways and reliability only go so far. Trying to gather the lot of us in one location in a timely fashion is like herding cats, high on gasoline. But she does her best. Let’s just say the phrase “You guys are seriously ruining Christmas!!!!” is uttered more than once during our stay. But eventually we all arrive, end up at one table, and celebrate the way we always have; with food, drink, laughter and gratitude.

Correction, Christmas has NOT been ruined.

We’re lucky to have the hosts we do. They treat and feed us very well despite our chronic tardiness and lack of organization. Experiencing the Gelpi crew back together under one roof is a recurring novelty for me, and I never expect it to get old. Not unlike those baby dolls I used to ask Santa for every year as a kid; the ones that pissed in their pants and could digest plastic food.

Given how loud this year was, it’s hard to imagine that there will be two new babies added to the mix by the next one. But the more the merrier I say. Can’t have enough kids at Christmas.

Harlow, slightly overwhelmed — Harlow, only slightly overwhelmed Christmas morning.

I promised myself this year I would not stay home for New Years Eve. For too many years I’ve either celebrated with my parents or gone to bed at 10:30 and woken up groggy to a new year without anything to commemorate it. I’m well aware that NYE is often overhyped and ends up in broken plans and separating from the group and yada yada yada. I guess since getting sick and falling off the social grid, I’ve craved dressing up and celebrating in some way at least with people of a similar generation. So this year I made it happen. My friend Merric and I wore pretty dresses, attended random venues and saw fireworks at midnight. I had zero expectations for the night, which quickly reminded me what a total recipe for fun that equals. No expectations means no letdowns, and it made all the incidental places we ended up in feel perfect: an uptown house party, a hole in the wall bar in the Marigny, fireworks on the river, and reuniting with an old friend on Royal Street at 2:30 am.

Walking down Canal street at that hour, I felt totally alive. I walked a zig-zag path having to cross the street to dodge what looked like trouble or some drunken leftover heading my way that I had no intention of interacting with. Still, I enjoyed the hell out of it. Among the noise and strangers yelling about a better year to come, I felt my ‘place’, like I fit somehow. I felt on the inside. I don’t know if it was them, or me, or the French Quarter at night, but in that moment I felt real optimism for the upcoming year. I felt complete gratitude to be alive and forgot about whatever circumstances I’d deemed crappy before. I guess for the first time in a long time, I felt my own age, and realized how nice it is to feel that way. I made friends, I made a fool of myself, and I probably made some mistakes. But they were mine. I was out in the world that I’m often only looking out at through a window. And that, for me, made for a perfect New Years Eve.

Now, back to recovery. And no regrets!

Health, Happiness, Holidays.

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