The Day After…

I am laying on my couch with an ice pack on my head, going through a mental checklist of things I need to do. I need to take a bath. I need to do the dishes. I need to finish my proposal. I need to re-ignite the petition. I need to eat. I’m shaky and my heart keeps beating fast and I don’t have an appetite. It’s interesting how hard it is to eat when you don’t have an appetite–just in the sense that like, you need food to survive and to maintain health and that sort of thing. I need something substantial like a sandwich, but that would involve going to the grocery store and hah.. hah..that’s funny, nope. Not happening today unfortunately. Oh look, a stray almond! I’ll eat that.

This day, my head, my house–all of it feels extremely dense to even process and insurmountable in the department of all the work I’m behind on. All the things I said I’d pick back up or start or finish. They’re just sitting there waiting for me, and I’m laying on the couch waiting for my brain to calm down. I probably need to sleep but I can’t, so I just picked up my phone and figured I might as well write these out of sequence, inconsequential thoughts down as I definitely do not do the things I need to do on my to-do list.

It’s a rough day physically but that was to be expected. We returned home from a trip to Salt Lake for my cousins wedding. I knew that I’d probably overdo it on the trip, but I so rarely get to see my family, sometimes you just have to live a little. But that almost always means you’ll have to pay a lot, with money you don’t have. (Sometimes you get lucky) Don’t ask me how this metaphor ends because I really don’t know. Traveling home yesterday was another clusterf*ck of overwhelming noise and sounds and airport personnel yelling things and security guards barking orders and that strangely depressing wait in line without your shoes or belt–so vulnerable! Laptop out of the bag? Fine, fine, whatever you want. There is also the very particular physical discomfort of flying– that pressure in your head, particularly taking off and landing, the loudness of the motor and that background, high-pitched white noise that makes everyone’s voice sound like it’s coming from a crappy radio. It felt like my brain was swelling, and hey, maybe it was.

By the time we reached our gate for the first leg of the flight I was so cognitively overloaded I was holding back tears. Cry baby! I actually wasn’t sad, I mean I may have been sad to look at, but it seems now when I get cognitive overload that’s what happens. Tears. So.. that’s cool. Then we stopped in Las Vegas– now THAT is a soothing, nice quiet airport where you can really decompress. OK but seriously they should warn you when you get off the plane that all of your senses are about to ignite and possibly implode from the inside and so here are some free ear plugs and a helmet so you don’t die from… I don’t know, too many sounds? I can hear the coroner now say it in a British accent: “Twas death from too many sounds.” It felt like a few tiny deaths. We had time to eat in that airport and even the wallpaper in the food court was overwhelming to look at. It dizzied me. It had diamonds, clubs, spades and hearts, which is very appropro for the destination, but it all just felt like.. a lot. By the time we came home I wasn’t even tired– I was somehow a little wired but enjoyed some silence for a while before more Parks and Rec on Netflix because that show feels like home. OK, this is getting boring.

The good news was how well I felt for at least 3 days of the trip–and they were the important days, too. Of course, I take enough pills to knock out a linebacker, so that always helps keep me somewhat functional. But in general I’ve improved functionally since August, which was a hot disaster with a lot of time being useless in bed. About a month ago, I began taking an anti-viral (Valtrex) for HHV6, Cytelomegalovirus, and possibly a virus that hides in the dorsal root ganglion and can cause a lot of head and face pain. (I’ve basically had a headache for seven years and it spread to my face roughly three years ago. Woo Woo!) So far the pain isn’t noticeably different but I’m moving with more ease, and in general, the right direction. Maybe it was the mountain air. It actually snowed while we were there. It was a nice, balmy 93 here today.

Maybe it was seeing a whole side of my family that I never get to see. And as much as I wish we saw each other more often, it really does make each visit we have together feel pretty special and end up epic in some funny, legacy-leaving way. Like that Christmas when my mom got mad at us for having a bonfire and said we were being reckless and stupid and someone was going to catch their clothes on fire. We laughed her off when she went inside, and then ten minutes later my brother-in-laws pants totally caught on fire. Pretty stupid to be waving lit palm tree branches around as they rained down fiery leaves, but, also hilarious.

My sister arranged for roughly 20 of us to stay in this ginormous house that I am convinced was used for a family of Sister Wives. There were just far too many weirdly placed exit doors with locks. Three too many kitchens. And living rooms. Too many odd rooms where it didn’t all make conventional sense. Hard to explain. Wait should I be a sister-wife? Then I would have help with my wifely duties! Need to think on that…

Anyway, all the love and laughter and piano playing actually energized me and I did better than expected. Major bonus: there was a piano in the house. Second major bonus: my brother Doug, professional jazz pianist and teacher, at your service. Add them together and you’ve got yourself a strange rendition of the song “What If God Was One of Us?” because apparently my brother Nick has really weird taste in music. Doug serenaded us intermittently with some improvisational  jazz, and like always, took requests. So of course, when everyone stumbled inside the house after the wedding, feeling nice and toasty from the matrimonial alcohol, it was only right that we all belted out “Piano Man” at probably an obnoxious volume, with some periodic hugs and a few sloppy cheersing of glasses. We toasted to the dead people and then played all the games they had downstairs, including ping pong, which I think I might actually be decent at. I’m not certain, I may have just played people who were really bad at ping pong. I do curse a lot when I play for some reason. Tisk tisk.

It felt good to be surrounded by people again, and experience the love and noise and general “togetherness”,  whatever that means. I just know it’s rare and fast and doesn’t happen very often, so I soaked it all up before returning to real-life, which is much quieter, and less cool. Waking up Monday was the first day my body said “OK no more though. Like really, I’m out.” And that was OK because there was nothing left on the agenda but to fly home which, was in fact the toughest part of the trip. (“First world problems” I know I know.) So now in the aftermath I lay like a pile of laundry, running through the things I need to do but will still most likely not get done. Dishes. No, eat first. But, no appetite. No real food. What a train wreck: get it together!

There is so much more to say but this is starting to feel like a bore and I still need to eat. How many times have I said that? Anyway, the search continues–how to be sick and alive in the loud, fast world– also how to let things go that you’re unable to do the moment you want to do them, without like, giving up on life. It’s only the day after, I guess the dishes can wait. They aren’t going anywhere.

Here’s a gem of a photo that my cousin Brittany took of at least most of us. It feels like an oddly accurate representation of us all. If anyone in the family doesn’t want to be on the blog…sorry…but you are. I was going to say I’d fix it, but we all know I wouldn’t fix it. I still haven’t eaten! I must eat. Can you spot me? I’m the idiot.

Health, Happiness, Recovery

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Duck Sauce

Congrats Ryan and Wendy! We love ya.

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Fuel to the Fire

It’s been so long since I’ve typed at a computer, I think my typing speed may have dropped to under 60 WPM. Dangit. I should probably quit writing everything by hand in notebooks, if I want the words to appear anywhere else but in a stack on my bookshelf, that is. Also my handwriting is pretty indecipherable so I guess it makes sense to stick to the computer. It’s just that writing by hand has always felt easier, more accessible and immediate. There’s something more rousing about putting actual pen to page. I hesitate less. My ‘thinking’ mind turns quieter, and the space that must open in order for the good writing to come through stays that way, without distraction. Especially when I’m scratching away with a really great pen. Right now it’s a black Pilot G-2 07. Sounds like a damned air o’plane, and I’d even describe it as a “smooth glider.”. So, I guess I’ll just be transcribing from page to machine for a while. I need an intern. Any takers? I will pay in doughnuts. Why is doughnuts spelled like that?

This last month has been filled with a few major milestones. Most of them aren’t mine, but in the absence of personal excitement, the achievements of those in my inner circle are close enough–plus it’s something to tell other people. Like someone will say Whats new Mary? And instead of saying Um, nothing. I say Not much, but my childhood best friend had a baby! See how that works?

My childhood best friend had a baby. For real! It’s still hard for me to wrap my head around it, not because she’s the first of my friends to start a family. But because we’ve just been friends for so long, since we were babies in fact. We still laugh at jokes from when we were five! Sometimes I feel so young around her–I guess the kid in me comes out. Now she has one! A beautiful, alert, amazing little daughter. It’s all very exciting. I’ve decided that I’d like her to call me “Ont Viv” (what Will called his aunt in the Fresh Prince of Bel-Aire) I find it fitting, and if she has half the sense of humor of her mom, she will appreciate the spirit of this name. Of course, just like a milestone birthday, this big thing happened, and yet it’s not that different. Kaitlin and I are still the laughing, weird, sister-friends we’ve always been, except now there is a tiny little girl sleeping in the corner while we talk. Funny how everything changes, but the middle stays the same. Welcome to the world Bernadette Jane! Love, Ont Viv.

My other best friend, Dr. Emils, got married a week later. I was a bridesmaid: score! A Southern girl and a guy from Amsterdam equaled a classic New Orleans wedding with a dash of Dutch. Nice. Two days of wedding festivities and a crawfish boil led up to the ceremony at sunset, on probably the best day of weather New Orleans has had all year. Everything was perfect and she made such a beaming, beautiful bride. It was a happy, lively experience to be a part of and filled with a lot of love. All topped off with a long second-line led by a classic Nola brass band singing all the greats, including When the Saints Go Marching In. Weddings are the best. No, New Orleans weddings are the best. If you ever get the chance, go! I’m really happy for my friend, mostly because I could tell how incredibly happy they were together.

I’m also the last single girl on the planet. Sweet.

Engaging in a two day wedding weekend is a rare chance for me to see old friends, to be around people my age, to have a reason to dress up–or get dressed at all, for that matter. It’s not often that I get to do things like this. Not often I get to be 32. My life consists of a lot of solitude, which I like, but it’s always nice to get a glimpse of life outside the farm. If anything I live more like a 90-year-old dog lady, so I try to soak up every moment of acting 32. It’s tricky too, because I know that participating in things like this are not without consequence. Acting my own age comes with a price tag, so every time I decide to do it, I’m making a silent agreement. No one really knows the gravity of decisions like this. Or what’s involved in just showing up, or how  I’ll pay for it all later. The choice is so much more encompassing than just deciding to attend a party. I swear I don’t write this out of some martyr, woe-is-me mentality. It just struck me as I was swiping through photos of the big day, which was a really fun day–that it makes perfect sense why so many people misunderstand the illness. They don’t know the weight and preparation and consequence of partaking in something normal, like being a bridesmaid in a wedding. How could they? All they see is this:

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I did.

They couldn’t know how much time and tedious planning went on beforehand, including scheduling when I would bathe, to ensure there’d be enough time for rest between that and the next event. They couldn’t feel the certain amount of pain you just have to bare through things like this. They don’t see the plethora of medicine necessary to endure standing and socializing and lasting through a night. And they’d probably never consider such things, like a bath, or socializing, as exertion in the first place–As something that counts against you in your fight to keep strain at an absolute minimum. And that is almost always the goal. It’s obnoxious even to me, as I write it now. The strange reality of living with this thing. The exhaustive necessities involved in even small things. You’re always calculating how much every little thing will cost you, always trying to save up if you’ve got somewhere to be. But what really struck me is that nobody sees what the pricetag actually looks like. That’s because the pricetag comes later. They don’t see the subsequent week or weeks of recovery that follows at home. Which can look a little like this…

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Poor Monty

When I thought about the outward appearance of illness, the timeline of how it plays out, what I show to people when I’m out and what goes on at home–I realized not only how easy it would be to get the wrong idea about the disease, but also how I might play a part in misrepresenting its reality.

For one thing, I want to emphasize that the reason I am able to even show up and participate in a wedding is because I’m currently at a functional-enough level to pull it off. There is a spectrum to the disease, there is waxing and waning, and there have certainly been times throughout the last 6 years when I wouldn’t have been able to stand at the alter. Even so, being “functional-enough” still means tedious logistical preparation, and a two-week long crash as a result. So, I’m still miles from where I once was, or should be. But many others are bound to their homes, many are bound to their beds, and we are all suffering with the same disease. I realize that people may see me when I’m in public and just not “buy” that I could be sick. And I see why this misperception persists.

But I also think that often we assign too much power to labels, and we attach our personal version or image of what “sick” should look like, and those who don’t fit the bill are either doubted, ignored, or assumed sick “in their heads.” We should all consider the many forms that ‘sick’ takes, and acknowledge that even terminally or chronically sick people don’t look sick at all times. No one would’ve guessed my dad had cancer, and that guy was dying! Looks are deceiving, and this immediate tendency to mistrust what we don’t immediately see or understand results in a basic lack of humanity. I am probably at my most functional that I’ve been since 2012, but I still walk a very fine line. It can and does go south easily, and it still requires help from my parents, a lot of rest and recovery time, a ton of medicine and doctors, and a lot of supine time on my own. (With Monty) And I am a lucky one, for sure. I know that people who suffer with anxiety/depression, bipolar disorder, OCD, Lyme, MS, Lupus and other chronic diseases suffer with similar outer doubt and confusion because their illnesses are not always easily seen from the outside. Labels, symbols, projections; they’re all powerful things, and they’re something we should consider and adjust on the whole before we make up our minds about something we may know zilch about.

I think I feel the need to write about this because ever since I entered the world of MECFS advocacy last year, I came face-to-face with just how poorly understood the disease is, how much misinformation/pure fallacy is out there and dominating the conversation, and how many people are getting it wrong because of the name alone. (Another thing I understand, it’s a stupid stupid stupid name.) I also have to consider whether I am helping to change and fix these misperceptions or if I’m at all contributing to them; and if I am, what I can do to fix it. I thought a lot about that after the wedding while looking through such beautiful pictures from the day, from the confines of my bed, knowing I wouldn’t leave home for a while. I didn’t think critically about this before last year, but I’ve learned up-close how much these things matter. The problem of disbelief is so much larger than gossip or personal dramas. This is literally public opinion shaping policy. It’s allowing the lack of intervention on a disease affecting millions of our own and many millions more around the world. How long will we allow people to suffer? How long will we let the accountable people look the other way? The world is looking at us and our treatment of this disease, and we are totally blowing it.

As soon as we show serious interest, I know other countries will follow suit. I know we will also make important new discoveries and possible cures. For now, we are at a stalemate that is costing millions of lives and billions of dollars. It’s almost hard to believe it’s true or possible after so long. And yet, here we are…

In the last year there has been awesome and much needed support from the public. The many signatures on the petition was surprising and still continues to humble me. I should say, it was that petition with such a substantial amount of sigantures that scored me the local news spot, a meeting with the Louisiana State Director (whom I spoke with for more than two hours about mecfs) and the reason I had a follow-up with our Senator Bill Cassidy. There’s more on the horizon. I’ll write more of that later. But our fight to be recognized, pursued and funded for biomedical research has come closer than ever in the past year, and we have to keep up the momentum. To quote my mom, “The timing could not be worse.” Hah, she is right. Politically things are somewhat of a shit-storm right now, and the potential for a slashed NIH budget on the whole obviously doesn’t work in our favor. But with the recent diagnosis of my sister, the possibility of backtracking our earned success, I have a renewed fire to fight and faith in myself, the advocates, the public, and the system, and an unrelenting hope that we can and will fix this. The timing might be terrible, and yet the truth is, there’s no better time for change than right now.

There are so many people in the advocacy arena who are doing big things–as for me I will continue to campaign for awareness in all ways I can think of, and restart petitioning for signatures. But I think possibly the most powerful voice is that of the public– not from those who are sick, but from those simply who see the injustice that’s happening. That’s who we need to hear more from, and seeing the amount of healthy people who have signed the petition already restores my faith in people all over the world will come together and make this happen. Thank you all again. Here’s to the next 40,000…

Health, Happiness, Fire

That Year the Universe Sh*t On My Family: A Six Part Series

Part 1: No Big Deal

There is no shortage of platitudes and sayings, bumper stickers or posters inside of cutesy frames meant to remind us how fragile life is. How fleeting. How fast it can all go upside down. How fast it can all go, altogether. Live Life to the Fullest, You Never Know How Many Tomorrows You Have Left. I hate this phrase, and I can’t totally say why. A cliché, true, but I can deal with clichés. I even love them sometimes. It might be that I see this and similar phrases on decorative pillows in Stein Mart, on picture frames holding happy photos, etched onto a wooden clock piece in my doctors waiting room, but I rarely confront people who actually seem to live this way. Except Monty of course- he does everything to the fullest. At that doctors’ office with the clock, for instance, the women at the front desk are really mean. All 3 of them, mean. True story. It seems like people who are conscious of how devastatingly short our time is here wouldn’t be so mean, particularly to sick people. But hey, maybe their boss is a jerk. Or they’re having a hard day. Or how about Hey, there are a lot of good excuses to be really mean. Doesn’t mean you have to be. 

I know, I’m writing as though I live this way and sadly I don’t. I forget all the time. I let petty things get to me, forget to be appreciative, or simply fail to treasure the life I’ve been given. Nobody gets away with a pain-free life. It wasn’t a part of the contract that we’d come here and it would be easy. That it wouldn’t hurt sometimes. But you know what other phrase I like? Don’t waste pain. What an auspicious, novel idea it is, to see pain not as a punishment but simply as part of the program. A piece to the puzzle, the plan. It doesn’t mean it won’t hurt, but maybe it doesn’t have to be so bad. In hindsight, it’s been the more painful and tough experiences that have taught me the most, made me dig deeper for purpose, made me kinder, more aware, grateful, better. It’s not that they aren’t terrible experiences sometimes, because damn, sometimes When It Rains It Pours. But what can you do other than pick up the pieces and keep going? If you’ve suffered a long time, you might as well redeem the coupon and see what’s on the other side of it. If it’s more suffering well, maybe you’re missing something. Or maybe you’re cursed. Either way, at least you have experience, so you’ll know how to do it. “I’m really good at suffering.” I should put that on my resume.

It’s easy to feel sometimes like you’re getting an unfair deal. And you probably are. I confront stories and realities everyday that are gut wrenching, heartbreaking, and nearly impossible to explain. Watch five minutes of the news, explain that. But I’ve also encountered stories and people who have suffered immensely, endured incredible pain,  and emerged as better people for it. They didn’t just survive their experience, their loss, but actually came out happier than they were before-not bitter. Fair or unfair, they kept going. And it’s almost a miracle to observe what some people have faced in one lifetime and not given up in the process. These people are generally pretty awesome, and hearing their stories are encouraging and important. Maybe their stories should make the news more often.

Anyway, this one year, two thousand and shit, I mean six, 2006, was a really tough one. For every member of my family, life roared its ugly head, respectively. But we survived it and it’s encouraging to remember that, particularly when it’s pouring. I also find it hilariously tragic, if that’s an acceptable phrase. Our lives did turn upside down, but we emerged standing. OK I emerged sitting but the rest of them, standing strong. So, here is our story, in six parts, of the year the Gelpi’s were shit on collectively. Just remember, it all ended up OK, even though at times it felt definitely not OK. Maybe that’s the cliché platitude to take away from that year. Everything is OK, even when it isn’t.

***

On a Tuesday morning in 2006, I can recall certain details with complete clarity; each of my senses awakens and remembers with a concrete ease. I am brushing my teeth in my college apartment surrounded by beige everything: carpet, walls, countertop. My boyfriend is watching TV on the couch waiting to give me a ride to class. Media Law 2030— my favorite course, taught by one of the best professors I’d ever have at LSU. Professor Freeman, the Man. On the first day he passed out a syllabus and guided us broadly through the timeline we’d follow through the semester. In bolded font halfway down page 1 it read: If you are going to miss any day of class this semester, make sure it’s NOT February 6th. It was February 6th.

I can taste the mintiness of that toothpaste still– I’m tapping the toothbrush on the rim of the sink, releasing the excess water. When my phone buzzes in my back pocket, I see “home” on the screen and think twice about answering. I know that conversations with my mom were often pretty long, so I consider waiting to answer it; call her back after class when you’ll have more time. But that thought quickly vanished and I pick up instead. On the other end, a very weak, unfamiliar voice emits from the phone–a voice that I know belongs to my mom yet sounds nothing like her. Mary? Shit. She could barely get my name out. I was standing by the bed now, looking at the ridiculously bright orange of my duvet; I’d bought it at Target because it seemed like happy bedding. Mom? I couldn’t know what she would say next, but hearing just one word in that crushed voice, I brace myself for the verbal equivalent of a car accident– that moment after the screeching breaks, just before the collision. Through palpable pain and shock, the words emerge just above a whisper. Roger died last night. …Crash…

Roger was my stepdad, my moms second husband. My dad had died of cancer when I was 12, and despite whole heartedly believing she would never marry again, in walked Roger. Her second chance at love. Something called grace, I think, seeing her happy that way again. Roger was the reassuring ending I could give people when they asked where my dad lived and then grew visibly uncomfortable hearing the answer. I’m sorry they would say, and I knew that they meant it and this was the standard response, but somehow its never quite felt right to me. Unfitting. Square peg in a round hole kind of thing. It’s OK, I’d comfort them. She fell in love and is remarried. She’s really happy. They’d loosen up, their shoulders would relax. I’d make some joke to break the tension. Better. It was OK.

What my mom was telling me didn’t completely register– it didn’t feel possible. That exceptionally human thought circulated: This was not supposed to happen. And yet in the same instant, something deep within, the intuitive part that knows things but not through cognition, knew with an aching certainty that it was true. Of course it was possible. These things happen everyday, except that they happened to other people, not to us. Four little words, nothing the same.

Goodbye It’s OK. Hellooooo cruel world!

I can’t remember if I sat on the bed or stayed standing, but I remember that orange of my duvet suddenly taking on a very harsh shade. A ridiculous color. I momentarily gasped for air and caught my breath. What? But I heard her, I knew what. You just figure, we already lost a husband/father, we should be safe with this next guy, right? All at once the universe revealed its impartial nature, the lawless reality of our life here. Fair, unfair, it didn’t matter. No one got a free pass. After shock, losing it, then regaining composure all in a breath, I tell her I’m on my way. I’ll be there in an hour. I hear her lose it again. Her weak voice, now with a noticeable outer concern. Your sister is getting married in a week! The cherry on top: one week until Amelie’s wedding–the already postponed wedding thanks to Katrina–at the same venue where Roger and my mom were married less than 5 years ago. Awesome. Cool. No big deal. I’m frantically throwing random clothes into a bag that will later turn out to be socks, a sweatshirt, pajama bottoms, and zero shirts. But I try to stay steady on the phone. Don’t worry about that. Who’s with you? She tells me our neighbor and two family friends are there. Still, in the midst of basic horror, she is heartbreakingly maternal. Are you alone? Don’t drive here by yourself. I tell her I’m fine. I’ve got the dog. I’ll be there in an hour.

We havin’ fun yet? :)

By midnight I was shuttling the last of my siblings from Louis Armstrong, across that long bridge, back to our house. They came from every direction, Amelie with a wedding dress packed in her suitcase. And what did we do? What the Gelpi’s do best: weddings and funerals. Oddly enough, it’s not just logistics. Although the fact that Roger died in another state complicated things only slightly. He was in Florida on business. When he didn’t show up for work the second day, they found him in his hotel bed. Something heart-related. Tragic to say the least, although not a bad way to peace out if you’re not into long goodbyes. With my dad there was time. This sudden-death thing was a whole new ballgame. What else can you do but step up and play the best you know how.

We planned a funeral. Prepared for a wedding. And in between we crowded around my mom protectively like a pack of elephants. We would cry a lot. Give a shoulder for others to cry on. We’d allow the silence when there was nothing to say. And we’d make ridiculous and morbid jokes when we needed to laugh, which we needed a lot of. People who attempted to explain the pain away or fill the silences with quips like “Everything happens for a reason!” or “God has a plan!” weren’t invited to our epic dinners. Not because these phrases weren’t true or even inappropriate really, but because it wasn’t about fixing it. Something tragic happened and it was going to hurt. We’d have to allow that. More than anything, that week was just about being there, being together, picking up the pieces and doing what we had to. I remember my boyfriend Gabe being nervous about coming over. “I know I’m going to cry when I see your mom.” I could sense his angst. But I laughed and reassured him, “So what? That’s what we’re all doing!” And that’s just what happened; when he saw her he cried and she did too. They hugged and felt it. And it was OK. We all took turns.

Friends and family would trickle in and out, and at night we’d have these big, loud dinners. Eat, drink, and tell stories about Roger late into the night. There was crying and hugging and crying and kleenex and relived shock every time we had to tell someone. But there was also a crazy amount of joy and laughter. My brother Doug laughed so hard he cried. So many people showed up for us in many different ways–food, room and board, help with funeral, help with wedding, never asking for a dime. It was truly an intimate and precious time, and we saw how lucky we were, how much love we were surrounded by. Roger was extremely particular so we’d have to make this funeral right. And I know he would’ve approved. The service was outside in the garden that he created, around the pond he’d dug himself. Lot’s of people spoke, including my mom. I can’t remember all of what she said, but I do remember her saying “To love is to be vulnerable to loss. And I’d still do it over again.” What a badass! We grieved. We rested. Then three days later, we had a wedding.

Correction; we had an epic wedding. Once again, the same people showed up plus a bunch of Californians from Keegan’s side. They said “I Do” and the celebration of love and life continued. A beginning after an end. Conceptually these ceremonies seem opposite, but they aren’t so far apart when you drink whiskey and get philosophical. OK there are many differences, but the biggest was the insane amount of dancing we did. And that would’ve been inappropriate at the funeral. I think. ‘Appropriate’ is a hard word for the Gelpi’s to understand, but I like it that way. It means throwing out the rules and embracing the moment, doing what you have to. Talk about a cliché. That week was an intensive life course in The Show Must Go On. And I have to say, I think we aced it. You might say we Danced Like No One Was Watching. That night when I looked over and saw my mom dancing among everyone, a week after tragedy and unspeakable loss (for the second time), I knew anything was possible. A lot of people might say we had really terrible luck, and they might be right, but celebrating that night, seeing my mom dance anyway? I felt really, really lucky.

I also had this strange feeling that big things were in store for her, good things. Turns out when I have strange feelings, I’m usually right. Stay tuned! .

Health, Happiness, No Big Deal

My Best Friends Wedding

It is a grey, rainy morning in New Orleans. It looks like it’s recovering from my weekend. I am staying at a friend’s house Uptown and have taken up residence in their sunroom for a couple of days. Like many Uptown homes here, the sunroom is filled wall-to-wall with windows– perfect little glimpses of the diverse lives of old and young people going about their days. It isn’t as action packed as say a window room looking down on the streets of New York City. It’s quieter, more stationary. But just as perfect as it gets to lay and read or write or think about things both heavy and light. I love days like this, in rooms like these. It’s a perfect do-nothing day. And I know what you’re thinking, aren’t most days of your sick, sedentary, jobless life do-nothing days? And yes, many are. Incidentally, do nothing days make for the best writing days. As though both were designed specifically for the other.

I’m surrounded by three animals; a black cat named Elvis that if I’m being honest strikes me more as a Stanley or a Todd. A domesticated wolfdog named Jax, and Monty of course. The cat has stayed near me all morning, and Monty is curious about the cat and Jax is curious about Monty, so we’re an entourage in every room I go including the bathroom. Undoubtedly the sporadic rumblings of thunder worry the dogs and they shuffle nervously when it comes, then drift back to their dog naps. The cat doesn’t move at all. This is the kind of weather I love and New Orleans I love. Maybe it’s that it reinforces the idea that it’s OK to stay inside all day. Doesn’t make you feel bad about never putting real pants on. And I always like things that slow us down. Life is fast. People move so quickly. I often feel like I can’t keep up and I’ll never have the energy to. Today is my pace and I am soaking it in.

I like staying at friends houses and perusing their bookshelves. I’m ever on the hunt for my next good read and right now I can’t decide between two: Merrick by Anne Rice–a New Orleans author I’ve been recommended for years now or In Cold Blood by Truman Capote. I saw the movie which I did love but the book is always something different altogether and so I’ve been going back and forth between both all morning. Dare I try reading two at once. Isn’t there some rule against it? I’ve never done it before but life is crazy and maybe I’ll do something super daring and go for two at once! Woah!

My life-long best friend Kaitlin (aka Matt Damon) was married this weekend and I was the maid-of-honor. Turns out that’s a helluva job! The official festivities started Thursday evening and I had to pace myself to ensure I’d survive until Saturday night, and store some energy for dancing late. With a lot of protein, drinking a lot of electrolytes, and the help of my respective 25 pills, I survived. Not only that, I had a blast. It was a beautiful wedding, and the reception had the three necessary components for a success: Open Bar, Amazing band, Awesome people. I must say dancing to “I’m Sexy and I Know It” with my parents, the brides parents, and the entire entourage was one of my favorite parts. It was a long day. The ceremony didn’t begin until 7 but hair and makeup people showed up at 9 am. Men will never know what we go through or how long it actually takes for women to prepare for events. Well maybe they do know, but they’ll probably never understand. At times it became stressful or overwhelming because it’s just such a huge day in so many ways and a strict schedule a million little logistical things to work out. Also doing anything in large groups is quite literally like herding cattle but harder. And it required some stealthy maneuvering taking photos at the hotel beforehand so that the groom wouldn’t run into the bride before seeing her walk down the aisle at Church. Things went quickly and the two hours before the ceremony became a little stressful just due to the number of things to do and timing and zippers that wouldn’t zip yada yada yada. (Not to mention that sad little Saints game we glanced between things)

One of my favorite moments of the night was when Kaitlin, her dad, and I snuck away and took five minutes to relax in the hotel suite before leaving for the ceremony. I forced food on Kaitlin because I’ve seen enough brides faint and I was not about to let that happen. We also watched a few minutes of the very unfortunate Saints game. Mostly we all just sort of caught our breath–Took in everything with some ease and some calm. There’s not a lot of calm on the day. I remember thinking I’d want to remember these five minutes we got to share. I knew it’d be the last of the night, not to mention, our last few moments with Kaitlin Pastorek the girl and not Kaitlin Pastorek Gambino the woman, the wife!

Bridal Selfie!
Bridal Selfie!

To me we are still kids playing mermaids in the pool. But in writing my speech the night before, I had to acknowledge that we were in fact growing up. And that doesn’t have to be sad. I love that our friendship has lasted and grown. I guess that’s a beautiful part of having a best friend–life is constant change, but together things feel solid, impervious to time. Maybe when we’re 80 I’ll still feel like we’re girls in our twenties jumping on the bed in our bath robes. Speaking of which..this was us in the hotel suite the night before the wedding.

See? Kids. But alas, kids get married too. And maybe just because people start referring to you as an adult and you start partaking in adult activities doesn’t mean you necessarily feel like one. Maybe that’s what everyone’s doing and just not talking about–playing the part, going through the motions. Or maybe some people actually feel like adults and I’m just really struggling to grow up here. Who knows. Life is funny. Weddings are fun. Best friends weddings are really fun. And as I’ve always said, New Orleans weddings are the best.

Health, Happiness, and Supposed Adulthood