All I Want For Christmas is $100 Million Dollars

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.

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Real nice, Doug.

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.

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Toy assembly line, 4:45 am
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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.

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Christmas Eve, 1984

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.

Holiday Hangover

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.
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.

party.
party.
Hole in the Wall
Hole in the Wall
Living Room.
New Orleans Living Room.
Lilly.
Lilly.

Now, back to recovery. And no regrets!

Health, Happiness, Holidays.

Even When It’s Bad It’s Good

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…photo-7

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 photo-7

Home Is Where the Holiday Is

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

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

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

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

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

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

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

-Joe Moore