Christmas – FibroM.E.-Awesome

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

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

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

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

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

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

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

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

Who could do without these cotton headed ninny muggins?

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

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

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

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

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

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

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

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

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

This letter can suck it.

Best be summed up

With a fart sound.

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

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

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

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

Health, Happiness, and the Roaring 2020’s

The In-Between

Published on December 9, 2019 by Mary Gelpi2 Comments

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

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

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

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

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

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

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

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

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

NEVER

GETS

OLD

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

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

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

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

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

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

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

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

Health, Happiness, Keeping up

Cheers To a Slowly Dying Christmas Tree and the Start of Something New

Published on January 23, 2017January 23, 2017 by Mary Gelpi8 Comments

My Christmas tree is still up. We might start there..

Two Fun Facts. Even when your Christmas tree begins to shrivel and sadly die in the corner of your living room:
1. The decorative lights still emit that magical glow when turned on at night and you’d never know their was death lurking behind them.
2. It still smells like Christmas! Even while dying, that one of a kind sap-infused, woodsy, cinnamon smell still infuses the room from the corner where the tree sits, but looks more like it’s floating.

I still catch random whiffs of Christmas when walking by or while reading on the couch. It’s like the original air-freshener, and since the scent is so sporadic and only comes around once a year, like Girl Scout cookies, encountering it feels uniquely special. Like glimpsing a shooting star or seeing a bald eagle. Sometime its feels like a nice gift the tree is sending my way. I think, Hey thanks tree, you have a good day too! What I’m saying is, you begin to talk to things that are not human when you live alone, and that’s OK. It’s bound to happen. I think. I’ll ask Monty.

I tried deciding whether a Christmas tree still hanging around on January 22nd that also happens to be dying is depressing conceptually or not. I say conceptually because I can say from an actual standpoint, it most definitely is not. It still brings all the joy it did from day one. I am a Christmas enthusiast and my fervor has always extended to the art of holiday decor and the unmistakable enchantment of a Real Live Christmas Tree. Everything about them makes me happy. Until I start seeing them on the corner of peoples driveways laying on their side next to the trash can– what a tragically depressing image to encounter. Or it always was for me, growing up. I feel that keeping the tree around this long and seeing it to its final days, I’m squeezing every ounce of wander out of what Christmas trees have to offer. It’s like The Giving Tree! Except in this case at the end, we burn it in a large pile of leaves and miscellaneous dead foliage and branches out in the prairie. But I find this to be a far less sad ending to the tree than awaiting its demise on a driveway and being tossed in a trash truck full of rotting food and discarded junk. I wonder if it freshens up the smell of the garbage truck? Probably not. Anyway burning the tree returns it to where it came, and whether that works out scientifically or not, for me it feels like a much kinder fate. And symbolically more appropriate.

As for outsiders, seeing a dying Christmas tree still lit up in my living room might look like a lapse in civility or domestication on my part– some kind of improper etiquette. Like having dishes in the sink or a mess of a house when company shows up. It’s always a little shameful when people visit, especially unexpectedly, and your place isnt tidy. Somehow it feels like a reflection of you– whether clean or dirty, we’ve come to see dishes in the sink as a little pitiful and a perfectly sanitary house as the height of a life in order! But order doesn’t imply anything moral or productive. Then again, a really dirty house does start to make you wonder about the direction someones life is going. If you haven’t done laundry to dishes in over three months, it might be time to talk to someone. It’s funny how having a clean house gives us a sense of pride and sends the message of “I’ve got my shit together and things are great!” Somewhere deep down, don’t we all secretly wish our homes smelled faintly of Pier One Imports? THAT is a fresh, successful smell if there ever were one. Unfortunately you can’t detect what your own house smells like, you can’t discern your own smell, so you kindof just have to keep up with the cleaning, pray that your pheromones mix well with your dish soap and the wood of your cabinetry and whatever else is informing the air of your house, and hope for the best. Many houses I can think of from growing up have distinct smells to them, that are still there when I visit today. It always elicits memories of certain times way back when. Funny how just a smell can be so tightly tied to a person or experience. I can still remember the exact smell of my grandma baking homemade bread. It takes me right back to childhood, to punching down the raised dough in those huge seventies-colored bowls, and to that first piece warm out of the oven. Son of a nutcracker I am hungry now.

Anyway, I imagine somewhere in a book of manners and proper social behavior, there is a responsible cutoff date for the Christmas tree, and if yours is up past that date, forget it. You might as well quit your job and stop tying. For me I don’t have a real job so there’s a personal loophole–if in fact, Jan. 23rd is past the cutoff date for tossing out the tree. Anything after that is an obvious decay of domestication. Or maybe just poor manners. Maybe I’m still in the clear because it’s still within 30 days of Christmas, and if I can still technically return a gift to Target, then I should be squared away with the tree. Either way, none of this actually matters and obviously you should keep your tree up as long as it makes you happy and does not accrue mold. Isn’t that how we justify killing them for the purpose of holiday decoration in the first place? By enjoying and appreciating their beauty and assorted pleasures for as long as possible, we sort of redeem cutting them down. Sort of. I don’t know, what is the environmentalist take on real Christmas trees? Is real or fake the greener choice? Probably fake, right? Let me check.

Well that was a hellstorm. I’ll save you some googling time and just say the conclusion to ten articles on this very subject is that the science is still out on conclusively naming one or the other as better (or worse) environmentally. Worth noting is that artificial trees are created using this special ingredient calling PVC (polyvinyl chloride) which is not recyclable nor completely biodegradable. Also vinyl-chloride is listed as a human carcinogen. You have to use the artificial tree anywhere from 7-20 years (there are multiple conflicting studies) in order to make it less harmful to the environment than using a real Christmas tree. Also at least 90% of real Christmas trees are farmed, which keeps the natural population healthily sustained. Hmm, one can emit hazardous fumes in too high a dose, and one provides magical Christmas dust that enlivens the senses and makes miracles. So I am biased clearly, but I still say down with artificial arbor. Go real. Go green. And inhale that magical smell until March if you want to.

Its funny, but even though Christmas is well over, I’m still recovering from the festivities I partook in. Some of it is my fault; I have a hard time doing what’s best for myself in terms of the illness, and doing what is fun and adventurous and happy in the moment. This disease is so insidious, it doesn’t let you know how much you’ll have to pay until you’ve already done the damage. Its like going swimming today, but not having to hold your breath until tomorrow. Say you swim in the ocean and get distracted by the tropical fish. You go under water following them around, and all the while you think “I haven’t been under that long, I’ll definitely be able to hold my breath this long tomorrow when the time comes.” You think that because you’re stupid and you didn’t learn your lesson from last time. The next day comes and you have to hold your breath for all the times you went under water, but on some of your sub-surface excursions, you were distracted by awesome sea life and stayed under like 3 minutes. Now you’re trying to hold your breath for three minute stints and you’re blue in the face and passing out and thinking, why did I go under the water. Why Mary WHY. So, that’s one way to explain it. Anyway, Christmas is happiness and this year it was a great one. Sometimes the dive is worth turning blue.

I’m not sure what it is exactly, but I’ve had the feeling for a while now that 2017 is going to be a very special year. I can’t say how specifically, but I sense that big changes are in store. Important changes. Great changes. And that the start of something new and big has already begun its course. It’s only an intuition so what do I know. Maybe anything compared to the dismal 2016 will seem auspicious by default. But something tells me it will be more than that.

I never saw myself in the world of advocacy or politics, but tomorrow is the first day of a very important journey that I suppose will include both. It’s the first time I will meet with a politician to talk about me/cfs and address the funding issue, in person. I’m meeting with the Louisiana state director, Brian McNabb, who works in the office of Senator Bill Cassidy. I have no idea how the meeting will go. Of course, I have my talking points prepared and there is only so much my brain can store. My main is goal is to tell the truth and leave a lasting impact. In my imagination the scenario goes like this:

We start with some charming banter yada yada yada, he pours two glasses of whiskey, and as the ice clinks in our glasses I say “Look McNabb, we need $100 million from the NIH for this disease. Minimum. And we need it yesterday.” He thinks a moment, sips his drink and says “You know, after reading the riveting history of this disease, the outright neglect, and the heartbreaking stories of so many who’ve been devastated by it, I’d like to offer $200 million toward biomedical research. It’s actually the more appropriate and fair amount.” I walk over, raise my glass to toast to this proposal and say “Wonderful Brian. You’re doing a really incredible thing.” Clink!

“How soon will the funding come through to the NIH?” He thinks a moment, “I’ll have to get a few documents in order, but I’d say by tomorrow around 4. Does that sound alright?” I begin to put on my jacket to leave. “Sounds fine.” He opens the door, “I’ll let Mr. Collins know about the funding change. Anything else?” Walking out I hesitate, stop, then turn around. “Actually, I have these parking tickets in New Orleans I never paid-” “Ms. Gelpi! Don’t be ridiculous! I’m not a genie I can’t just say ‘poof!’ and fix everything!” I blush from assuming something so stupid. “You’re right, I’m sorry. It was foolish to ask. Forgive me.” I turn my head away a little embarrassed. He nods affirmatively and ushers me out. Before he closes the door I yell inside just to be sure “But we’re still on, $200 mil to the NIH tomorrow by 4? Right?” He already has a phone to his ear and looks distracted by some new matter. “Right. 200 mil. 4 o clock. G’bye now.” The door shuts and I turn to walk out, grabbing a handful of Worthers Original candies from the crystal bowl on the secretaries desk. She doesn’t mind. Outside it’s chilly as I walk to my car and my legs are already aching, but I don’t mind, it’s too happy an occasion. I arrive at my car and immediately notice a boot on the front tire because my meter expired while I was inside. There’s also a notice that says I have dozens of unpaid parking tickets and my car has been seized. I turn around and march back toward the tall marbly building. I dial my mom, walking up the steps. “Well?” she answers with anticipation. “Mom! I’ve got good and bad news, which would you like to hear first?”

The End

That sounds like a reasonable scenario, right? I’ve heard that’s how Washington works so, I’ll keep you posted. :)

Health, happiness, GREEN.

All I Want For Christmas is $100 Million Dollars

Published on December 20, 2016December 20, 2016 by Mary GelpiLeave a comment

100 million dollars. I’ve never lived in a world where that figure represented an actual amount of money. I don’t think I’ve ever used it for anything more than hyperbolic effect in conversation. As in, Anthropologie is so expensive even a scarf there is like, 100 million dollars. I’m not even sure I could write out that number with confidence about how many zeros follow the number one. Unacquainted as I am, I’m learning to write and say it with total conviction, because now it does represent an actual amount of money, and I am seeking it with earnestness. Within the strange world of politics-meets-medicine, it’s no longer an absurd number. In this new context it’s become completely reasonable. In fact, some would say given the facts, it’s an exceptionally modest amount. Go figure.

As many of you are probably tired of reading about, I began a campaign earlier this year requesting that the NIH allocate this amount of funding toward the research of a mostly neglected, orphaned disease. Over the year, this has become the most important pursuit of my life. And I believe the cause to be one of the most important in anyones life: our health. Like many things, you don’t realize how important it is until you don’t have it anymore. Stepping foot into the advocacy world provided me with a new, unexpected perspective–to see the community I’m a part of, from the outside in. This adjusted outlook has fueled my insistence for change to a degree I’ve never felt before. Interestingly enough, this outside viewpoint began within my own family, but not from my own experience with the disease.

I rarely talk or write about it, but my mom has lived with ME/CFS for two and a half decades. Most people with this disease will tell you there is a pre-sick version of themselves that couldn’t quite survive once the illness took hold. I was only 2 when my mom became sick, so I don’t remember or know her as any other way than how she is. I’ve been reflecting on the reality that there is a whole side to her I’ve never really known. Prior to getting sick, she might better be described as a type-A personality. She was fast-moving, organized, sharp–an ER nurse. She and my dad had a large social circle and were both involved in the community and church. But no one would ever know about this past part of her, how could they? She left work tentatively to devote herself full-time to motherhood and raising four children under the age of five. In pictures she looks happy and privileged to be a mom and wife. In old videos she is lively and beaming, her voice animated, giggly at times.

Christmas morning, 1984. 4:30 am. Grainy video footage taken mostly by my dad (a tech geek elated by new video recording technology) reveals this other side to my mom that many people besides me have never known. In the classic reddish-brown hue that tints all memorabilia from the 70‘s and the early 80’s, three kids under the age of five are glowing in wait in our sunken living room. The fourth kid, me, is five months old sitting in a car seat on the sofa. (Thanks guys) My siblings frantic excitement is palpable–the kind that only comes on Christmas from children who still believe. They remind me of shaken up cans of cola, overflowing with joy. In contrast my mom and dad aren’t entirely awake yet given the hour, and early video footage provides evidence of a boisterous Christmas Eve party late into the night before. They speak in soft tones of voices and have glazed over look on their faces. Despite the lack of sleep, my mom still looks beautiful in a long white robe, rubbing her eyes intermittently to try and pep up. The kids grow more intoxicated with each new gift, and both my parents take turns reacting to 3 individual shouts of “Look at my new toy! Look! Can you open this?” Crumpled up wrapping paper begins to litter the room like discarded wads of kleenex. Outside, it’s still dark.

unnamed-1 — My brother Nick is crying because he can’t find his legos.

I love this footage for many reasons. For one thing, it captures such an iconic display of Christmas morning during such a happy time as if out of a Rockwell painting. You can sense the love between my parents, and observe childhood traits in my siblings that still exist today. Nick is methodical and organized with his unwrapping, and with everything. At one point my sister Amelie opens a gift and says “Wowwww!!!”as her eyes grow huge with excitement. When she shows it to my mom she laughs and says “Amelie, this is just the box.” My brother Doug still receives high-tech gadgets for Christmas and maintains the same enthusiasm. And me, I am still perfectly content to lie on the couch surrounded by my siblings–listen to them tell stories, laugh, bicker, cook, play games, and pine for my mothers attention. Even as a baby, I was comfortable and entertained just watching and listening to them live around me.

The footage is also deeply nostalgic of course. It’s both wonderful and emotional to hear my dads voice again, to see him alive and in his element. Happy, goofy, making corny jokes. But it’s also a snapshot of the woman my mom was before she got sick. It’s not that this part of her is totally gone, but the illness simply changes your capacity for regular things, even socializing. As such you’re forced to make adjustments. She appears so spirited and vivid in these videos, so unweighed down. Maybe it’s because I so often see how the illness has effected my own appearance every time I look in the mirror, my posture, my facial expression even, that I can easily spot how it’s changed her physically, her whole body language, the inflections of her voice. Even sleepy and in the early hours of morning, there’s an underlying, unrestricted vigor in her–something that lies dormant now. There is a heaviness to this disease, like an invisible ton of bricks you carry with you at all times. Look hard enough and it’s not so hard to see.

My mom was never able to go back to ER nursing as planned. “I couldn’t trust my brain anymore” she says, and the stakes in that line of work were just too high. While she still calls so many people friends and loves them the same, her social life took an extremely hard hit. Given the insidious nature of this disease, I imagine it’s difficult for those who knew her before she was sick to adjust to this comparatively different, limited person–who by most accounts appears so much the same. As a result, relationships struggle to sustain the blow dealt by all the change, and to continuously explain the illness and your newfound incapabilities is exhausting, especially because you have such little energy to begin with. As a result, many people tire out and turn inward, ending up more like hermits or monks. My mom has always been strong and independent, never one to feel sorry for herself or even reach out for help, perhaps sometimes when she could use it. As much as she’s made the best of it and adapted to a less social life, I know a place in her aches not just for the friendships she had, but for the friend she was once capable of being. This is one of the hardest adjustments to the illness, particularly painful because it happens during a time when you need friends and support the most.

Since the birth of her second child, my sisters health has been steadily declining. For the past year and half she has slowly worsened with classic MECFS symptoms. Ruling out many other diseases that mimic this one, she will see a specialist soon for an official diagnosis. But many tests are showing the same abnormalities as those with ME. She is the same age that my mom was when she got sick. Fortunately because we know now the best course of action, she has a better chance of recovery by addressing it early and aggressively. In March, she left her job tentatively to attend to her health full-time and attempt to get her symptoms under control. She has seen what pushing it has done to both my mom and me, and I don’t think any of us could stand it if it happened to her too. I know leaving her job was not easy for her. She loved her career as an interior designer, began a successful start-up firm with a partner and worked extremely hard. But as her symptoms became more frequent, more severe, longer and harder to recover from, she knew she had a decision to make: Cut her losses now or risk losing a lot more later on. She chose to act now, which was no doubt the right way to go, but I doubt that made the decision any easier on her.

For so long, my whole family, especially my sister and my mom have been my champions who carried me when I was weak and encouraged me when I felt hopeless. I’m so eternally grateful to them for all they’ve done and continue to do, and I’ve always wondered how I will ever repay them and my whole family for their kindness. I believe now it’s my turn to be their champions. Maybe this is my chance to finally return the favor.

I don’t have money to pay back the expenses, and I don’t have the strength to reimburse them by “working off” my debt. What I do have is a voice. A small platform. And a petition with 40,000 signatures. I’ve watched what this illness has done to my family. I’ve read the hundreds of heartbreaking stories that sick people have left on the petition page or emailed to me. I’ve become friends with Jamison Hill, the first person I’ve met who’s close to my age and has MECFS. He was a former personal trainer, and has now been bedridden since January of 2015. He lives in a dark room, able to tolerate exceptionally little light and sound; most days he is barely able to talk. Seeing this widespread devastation was upsetting but also opened my eyes to the urgency and dire need of this issue. It lit a fire within me that’s stronger and different than before. I think sometimes it’s easier to fight for other people than it is yourself.

My mom and sister never gave up on me, and so I promise that I won’t give up on this. It’s a black and white petition with a very specific ask. I won’t settle for the gray bureaucracy of political red-tape that is slow moving, inefficient and has failed this community for the last 30 years. I am hoping Santa, or the right senator, can bypass all that.

What an amazing Christmas it could be for millions of people with this disease around the world, to finally have real hope knowing that change is happening now, and the kind of research we’ve all been waiting on will finally be possible. It’s not a change that would normally happen quickly. And I don’t expect this fight to be easy or painless. But, it is Christmas. And even at 32, I still believe in something powerful around this time of year that makes anything possible. I know that this is, but it will require the right kind of help. Here’s hoping, for all of us, that we get it.

Health, Happiness, Believe

If you’d like to add your voice or help circulate the petition to more people, that would be amazing and please click here.

To donate to Jamison Hill’s medical fund click the link!

Yall Rock, Thank you to all.

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.

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.

Even When It’s Bad It’s Good

Published on December 28, 2013 by Mary Gelpi8 Comments

The Holidays rock. They just do. I feel worlds away when I talk to someone who doesn’t like Christmas. Or Christmas music. Or trees. Or gift-giving. Or ELF. (On repeat!)

Is it excessive? Sometimes. I can admit that. And has Christmas in our country become overly commercialized and sensationalized with the meaning lost in mall crowds, and could we have a long discussion about that over the dinner table? Yeah, we could. But I don’t like going there. I’ve never engaged in the War On Christmas propaganda that inevitably resurfaces each year. And it’s not in the name of denial, but because every year, for a small fleeting time, regardless of my health or where I am personally, the Holidays are a small but hopeful light at the end of a year–where I see more good in the world than bad. Often it’s a reason to become softer, reflective, and thankful. Or do something kind you wouldn’t normally do. If for no other reason than “Well, since it’s Christmas.” I love hearing those words. And I love the simple reasoning behind them.

For my immediate family, Christmas is always the time we give to ourselves to be a family. There are four kids in four states. There are grand-children and extended family and friends who might as well be. But I like that it’s been our staple. Usually it’s not a question of who will be attending Gelpi Christmas but where we’ll be making the noise. And we do, make a hell of a lot of noise. When it’s not me making it, I sometimes plug my ears. :) Life is busy. The work for all of us is different but tiring in its own way. It’s easy to get distracted and let time go by without realizing how many months have passed since we’ve had any genuine interaction. It’s easy for face time to turn into FaceTime and phone calls into text messages and those to turn into Facebook and Facebook to turn into emojis. I mean really, instead of writing this blog post I basically could have just put…

But emojis can’t replace real emotion in writing, just like emails aren’t as personal as phone calls and text messages will never compare to feeling the weight of a hug from someone you love. Admittedly, as the technology advances, it does help increase the amount of contact time between all of us. And thank God for it, because as secluded as my life sometimes gets, sometimes my iphone feels like my only window into the outside world. Technically I met my youngest niece Harlow over FaceTime and spent some virtual “feedings” with her. And I’m extremely impressed and grateful by what can be accomplished over a 2 x3 screen on my phone. It truly is, extraordinary. But still, holding her for the first time beat out those “virtual hangouts” by a long shot. Nothing like the smell of an infant, or getting her to smile. Or watching my niece Olive dance in circles to music or watching my parents enjoy grandchildren or playing cards with my grandma or my siblings annoy the hell out of each other. In a good way, of course! This year my 87-year-old grandma surprised us and came to California for A Very Gelpi Christmas. Show an old woman the capabilities of the iphone and try not to marvel at how far we’ve come and what we’re capable of. It’s a new world, and it’s changing all the time.

Every year at Christmas I always reflect on the previous Christmas. Where was I at this time last year? What has changed? Are things better or worse? And where can I do better? That’s the novelty of an upcoming new year. As they say, It’s never too late to live the life you want to live, and I am always striving to live better. To be a better me. Last year at this time, I was struggling immensely in my health. I had improved from the bed-ridden state but was still feeling awful day-to-day. It was a struggle not to be permanently supine. I found socializing exhausting and far from any fun. It was not one of my better Christmases, but I still enjoyed the tradition of it all, like always. Right after Christmas I relapsed again. I was stuck in Colorado, in and out of bed and freezing my ass off in their record Winter. I remember thinking in my darkest hours and sleepless nights, when the weight and relentlessness of my situation felt too heavy to bare, that this, like all things, would end. One way or another. It was a matter of physics. Time is one of the constants of the world, and it would keep going and eventually things would change. Winter would turn to Spring and at some point I’d lift my head with ease. I wouldn’t be bedridden in Colorado for the rest of my life, even if it felt like it. I remember reciting Winston Churchill’s quote: “If you’re going through hell, keep going.” That’s what I did, and at last, the physics of the world did what it always does. Winter passed. I was given the opportunity to live in a happy house with a lot of windows; just Monty and me. And my health very slowly improved from what it was. And I have truly never felt luckier or more grateful to be where I am. Things aren’t perfect. I’ve still a ways to go. And it’s never far away in my mind that this illness can hibernate and reemerge as if on its own agenda. Sometimes for no reason I can think of. But for now, I’m so improved from this time last year. And it feels good to know, that the reassurance I felt at night but could not see was real. The hardship wasn’t forever–the sun came out and I survived. It’s easy to be disillusioned and overwhelmed by our thoughts in hard times. But how important it’s been for me to remember, to everything, there is a season.

And for me, the best will always be this time of year.

Happy Holidays Yall. Hope it was a good one.

Health and Happiness and

Fall Yall.

Published on October 24, 2013 by Mary Gelpi10 Comments

They say the only thing constant is change itself. And when seasons change, particularly Summer into Fall, I always seem to feel a change on the inside as I watch the atmosphere play out it’s own changes. As if my circadian rhythms, my organs, my soul knows that things are going to change. I’ve always liked the feeling. The transition from Summer into Fall and Fall into Winter has always been the happiest time for me. That first gust of cold air. Pulling out old sweaters and cardigans. Cuddling in close to whoever you’re with. (I’m talking to you mom!) And there’s that slight reminder that the Holiday’s aren’t so far away and if you’re like me and ridiculously elated by Christmas, then it’s a good feeling to pick up on. I’d say if I could choose a season to fall in love, as if you could ever choose these things, I’d pick Fall. It also seems most likely to happen then in my eyes. A girl can dream. I say that a lot.

New Orleans weather is really weird. And by weird I mostly mean crappy. Our summers are long. Just too long really. And unrelentingly hot and humid. It takes your breath sometimes. Every time I fly into Louis Armstrong and exit baggage claim, my lungs get coated with a Southern sheet of bayou film and I have to remind myself how to breathe. It’s all part of the fun of calling Nola home. And I mean that. Our Fall is very short, much like the Spring. And Winter is fickle. A cold day comes. Everyone dresses as if the blizzard of the century is approaching and the cold due to the moisture in our air is penetrating and bitter. And then two days later it’s 70’s degrees and uncomfortably wet. If I could present our seasons through words arrangements it’s like this:

S U M M E R R R R Fall W I N TER Spring S U M M E RRRRR

So maybe the climate isn’t our major selling point, but I also don’t hate it. Cold days are such a novelty here, and the excitement brought on by temperatures allowing boots and a chunky sweater is contagious. Nothing gets a Southern girl excited like Sweater Weather. Just say those two words to one and watch the magic unfold. It’s true we don’t have four equal and distinct seasons; we have summer with a side of spring or winter sometimes. But we still get a taste of everything it could be much worse. We also get extreme thunderstorms, and I truly love rain. And not just the grey drizzly days. I’m talking intense thunder and lights flickering and those storm clouds that somehow turn up in shades in green. I love those days. Monty prefers to spend thunderstorm time in the bathtub, and I say whatever floats your boat homie.

Anyway I’ve been cleaning the leaves out of the pool with a net as Monty swims despite the water temperature having dropped majorly. To me, this is the quintessential image of Fall at home. Brown leaves floating in an empty pool. It’s perfect. I drag the net through the water and I get these bursts–an urge, an inspiration–I’m not sure exactly what it is. But I think maybe if I were a tree, I’d feel like shedding my leaves. And then suddenly, for one brief clear moment, nature makes sense. I continue to sweep the pool for miscellaneous debris including a Gatorade water bottle that monty dropped in and has sunk to the bottom. Since I don’t have leaves to shed, I went with the next best thing. My hair.

I chopped it. And got blonde added to it too. Mostly because, I felt that thing, that very internal tinge of electricity. The thing I think trees might feel. And I had to do something with it. I didn’t even care so much about the outcome once I made my decision. I just had to go for it. And leaves grow back in the spring–my hair grows fast. I’m 29 and I’ve never colored it. I’ve had long hair for so long that it was starting to look sad to me–sick even. It was reminding me of being sick. Suddenly I wanted the weight gone. Something lighter. Something new. As the hairdresser snipped my first 6 inches off, I remember my ex-boyfriend telling me he didn’t like my hair short. I shut my eyes and listen to it all come off. It felt good. It felt great. It rejuvenated me somehow. No more sick hair. Sick thoughts. Time to be happy and try new things. Time to act on positive impulses. Time to finish things I started and stick to things that I know are important. The leaves have fallen and my hair has lightened. (See what I did there?) I feel good about things. Good things are in the works. I encourage yall to make a change too. Do it for me. Do it for you. For Fall. Why not?

Report back. And rock on.

Health, Happiness, Fall.

Home Is Where the Holiday Is

Published on December 21, 2012December 21, 2012 by Mary Gelpi18 Comments

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

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

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

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

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

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

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

-Joe Moore

Sixteen Clementines

Published on November 30, 2012December 9, 2012 by Mary Gelpi15 Comments

It is a dreary, rainy day in California today. I love it! It was this way yesterday too. I had been feeling a little home sick lately and now suddenly I have damp Louisiana weather–the in between cold, lonely drizzle outside. It’s superb. It’s so anti-California. Feels like home to me.

When I stepped out into the rain for our morning walk, I was expecting to make it quick since that what’s you do on days like this-stay indoors. But Monty seemed so happy frolicking around and it felt pretty good hanging around out there, that I just let him get wet and play in the mud and people laughed as they walked by. I’ve always let Monty get messy if he really wants to. There’s no real problem with it..dirt washes off! So we got dirty.

Health-wise I have been improving since the whole too weak to move crash, slowly but surely. My naturpath doctor received some blood work two weeks ago that confirmed I still have lyme disease, as well as two co-infections (one is Bartonella, aka as cat scratch fever..what the hay?!) and one parasite in my gut. All right!! This is good news though because they were definitive results and allowed us to move forward with a treatment plan. Since she is a naturpath she doesn’t use antibiotics to treat things, so combating the lyme this go around will be a little more complex. I could go into the details but I don’t even understand them entirely and it’s pretty boring anyway. It’s a crazy coincidence that my doctor studied a while with one of the top lyme specialists in Northern California, so we’ve got that working for us. If we can’t get it under control with her care, she’ll send me to him.

I forgot to mention that part of seeing the naturpath is going on a major detox where you avoid gluten, dairy, corn and you drink this protein shake all the time which actually tastes decent! After 6 years of convincing me to go gluten-free, my sister can now rest easy knowing I’ve made the step. For now anyway :) The diet actually isn’t so difficult to adhere to but that’s because my sister keeps the house stocked with stuff I can eat and pretty much brings me dinner every night. You may ask yourself, what do you eat? The answer is yams. I eat a lot of yams. Kidding. Well, I did eat a lot of yams in the beginning. But the point is to mostly eat fruits, vegetables, and a lot of protein. So that’s what I’ve been doing. Yesterday I ate sixteen clementines. For real. I can only eat at least four at a time. They’re just so small and addicting. I don’t know that I’ve been able to tell exactly what difference the diet is making since there are so many variables right now, but I do know it’s nice to feel good about what goes into your body. I admit I never felt great mentally after stuffing my face with fudge sickles at 2 am. Mmmm fudge sickles. That sounds so good right now.

Since I’m pretty obsessed with the Holidays and Christmas in particular, I told Amelie and Keegan that since I’m a sick kid they have to grant me a wish like the Make-A-Wish-Foundation advertises in the commercials. (On top of housing, feeding, and caring for me, of course.) My wish was for a real Christmas tree and the day after Thanksgiving, we did it! She’s a real beauty. If she had a name it would be Anastasia. We’ll hang small milk bones on the bottom so that Monty will tug at those and not the real ornaments. There’s nothing like the smell of a real Christmas tree. It’s like Winter, Happiness, Warmth and Love all wrapped up in a smell. On top of that I’ll be blaring Christmas jams and watching Elf on repeat which my brother-in-law is really excited about. What can I say, I’ve always loved Christmas.

Apart from yuletide, I’ve been watching Woody Allen movies, taking pictures of people’s windows, and writing things late night I still don’t entirely understand. I still need to watch Crimes and Misdemeanors which I hear is one of the best..but Annie Hall is so ridiculously lovable it’s been hard to forget. I loved Manhattan too but it made me nostalgic for Annie Hall. I liked Melinda and Melinda a lot and also Alice. Husbands and Wives may have been a little too neurotic, and Midnight in Paris was the best! I really loved that one, and Owen Wilson’s character. Too good. Tonight I’ll watch Play It Again, Sam and then maybe I’ll get back into reading. Somehow I kind of stopped. Anyhow, I keep taking Monty on walks around our complex and I love seeing people’s windows from the outside. The blinds are always closed but people put little decorative pieces to view from the outside, and I like seeing them. I don’t really know why. So I started photographing them. I also realize it ups my “creeper” level a few notches, but I can’t help it.