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.”
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!
Captains Log: Day Four Million and Six. Still crashed, I guess. At what point do you stop considering yourself crashed and just accept that this new garbage state is just.…your new normal? Everything is acting up, like normal. But it’s been the challenge with my heart, wanting something it cannot have, which I’ve struggled hardest with. I don’t typically spend too much time in the “greener grass over the fence” world, but something in me is willing hard for a life I don’t have. It’s also being imaginatively precise in the world it wants that cannot exist.
I’m in a rut, if that wasn’t clear.
I’m reflecting on how it all began. I can at least say what helped inspire it: Ignoring what I knew I needed to do, which is one of those human behaviors I will never understand. My morale was low, which was linked to my motivation. It was still there, but it dissipated a little every day I wenton deflecting from the thing that would do me some good: writing. It was like a shooting star that burst in a short lived flash of light. But it would fade just as quickly if I didn’t act while it was illuminated. Then the sky would go back to black, and having failed to act, the brightness dwindled, as did the likelihood of me writing all the things pleading to be let out.
That’s why they say strike while the iron’s hot, I suppose. Again and again and again I’d have the spark and ignore it. Or put it off. Or write in my notebook, which is something better than nothing, but I knew it’d little good there. It didn’t risk anything or challenge me in a way that makes me try harder whether the quality is better or not. Saying “tomorrow is just as good as today” became a dangerous motto I obeyed and it’s not even true. I was kidding myself and knew it inside, but I still couldn’t pull it together.
Instead I worked on three sudoku puzzles from a Southwest magazine I snagged on my flight home from Miami. I made some dumb deal with myself if I could finish all three than I could trust my brain. I finished the Easy, then worked on the Medium for what probably took far too long, but finished, and then spent over a week on the Difficult until I messed up somewhere and it was impossible to fix. So I threw it out finally, assuming OK, now it’s time for writing. But then I studied Sudoku strategies online instead, which I’d never done before. Interesting stuff.
I went to Miami in the first place to see my real life hero, Dr. Nancy Klimas. I honestly feel little a star struck when I see her and I just want to run up and wrap my arms around her bear hug style and lift her off the ground. Do a twirl with her raised in the air! Hah, what a sight. She ordered a lot of blood work and neurotransmitter tests. One interesting thing she suggested was the use of a tens machine as means to stimulate the Vagus Nerve, which has gotten a lot of press in the MECFS world and has helped people with varying symptoms. One of those is headaches, and since I’ve had one of those for the last decade, I’m really hoping it will help provide some relief. 3 times a day for 15 minutes. I’ll report back.
It’s always hopeful to see a doctor who specializes in your disease, particularly when the other seven that you see have never heard of it. They’re doing your best, for obvious reasons, there limits to their help. Seeing Klimas was cathartic in that regard and other levels as I’m hopeful some of her ideas will help with multiple issues I’m having resolve, or at least improve. Particularly crashing almost every day about an hour after I awake. Also the cystitis and peeing every 10 minutes. And the daily migraines. And five months between periods. So, all of it, basically.
As for the rut, I think an envy began sprouting in me that at first I wasn’t so aware of. It started in a very dormant way, even though I was really enjoying my trip in Miami. I probably had more fun than I’d had in all of 2019 combined, which could fit in a thimble. It began with a very attentive observation of my surroundings, of simple things actually, and seeing up close how people who have their health are able to live and operate, day after day. I don’t know why this time I was so conscious of it and in such awe. On a general level at all times, I am amazed what man in a state of homeostasis can do. Maybe because 2019 had been such a burning trashcan of illness and life that I forgot what real health looked like. I was so amazed on one hand, and on the other, the envy for their ease of capability grew in me like a weed.
The logistics of family life, especially with four young children, is extremely difficult and doesn’t look easy. But it does look fun, too. I came from a family of six, so maybe some part of me naturally feels at home with that number. But to watch reliable bodies and all they could do became compelling and incredible. I’d listen to my brother and sister-in-law talk about plans, and I think I literally forgot about the concept of planning as a real thing.It’s not impossible and I still attempt it in my own life, but it is always tentative. Always. I am never, ever, a sure thing.
Not a second thought about showers, grocery shopping, cooking big meals every night, meeting friends for dinner. How involved their social life was! I mean, they had one. How at ease everyday chores and tasks and errands (Or even just delegating them) were— not that they didn’t require work, but that no one was forced by potential physical repercussions to choose whether they would shower or grocery shop. They were solid people. They accomplished so much each day and were dead tired by the end of it, just when I’d start to feel a little more awake, strangely. They went to sleep with warranted exhaustion, and the sleep actually recharged them.
My sister-in-law was so alive in the mornings, which is incomprehensible to me. Both feeling alive at all, and being functional before 2 pm. When she wore workout clothes, it’s because she actually worked out. Not because she was a poser like me who wore leggings because sometimes just the thought of denim against my skin makes me cringe.
I had truly forgotten what the privilege of health affords you across a day, a week, in all your many roles and expectations. I was amazed and then maybe progressively envious? Can’t say, but typically I’m overwhelmed watching the pace and the volume and the largeness of healthy peoples lives unfold. But for whatever reason, I finally felt it deeply in my bones, as though it’d been welling up there for years and I’d just never said it out loud despite it being glaringly obvious. To the point of it being useless to even repeat here. But it’s still flapping around in my brain, and I want to release it. I’m warning you, it’s stupidly obvious: I am so, fucking, tired, of living life with this illness.
How’s that for a Ted Talk?
It’s still there for some reason. It’s obvious, I get it, everyone in the world gets it– why it continues to circulate in my psyche like some grande revelation is beyond me. Maybe it just begged to be said plainly, without a “But” behind it or any justification for why having it has made me better in other regards! No, plain and simple. Just say it and leave out the decorum.
Pardon the F bomb, that’s just how the thought plays out. I write about hope and working with the hand you’re dealt and discerning ways to find meaning in the parts of life you don’t control. And suddenly it all faded quietly into the background. I felt like a hack. I looked around and could feel viscerally how much I wanted what I could not have. What was not mine to take.
I can’t stay in that space long, even though I’ve still felt way a while now, though maybe not with such fervor. Zukav says that “The splintered personality must always choose between opposing parts of itself. The backbone of evolution.” I doubt it grows me any to want for what isn’t real. To live in a dimension where bad things happen without timely ways to always understand them. I am constantly walking the line between hope and despair. It is far easier to despair, I admit easily. I have to choose hope, consciously, with the intention that even if I can’t see the meaning in all of this yet, it will be revealed. Or at least if I’ll find salvation and treasure in it, the way I would try to in a life with my health. I can’t accept it’s all for nothing. I won’t.
Still, some days, some periods of time: So. Fucking. Tired.OK, won’t say it anymore. My mom will wag her finger.
Interestingly, I still had a great time in Miami. It wasn’t that I felt better there–I was crashed most the time. It was more of a simple enlightenment that being sick around people you love and like is better than being sick on your own. Obvious, I know. I stayed in bed, sleeping on and off until around 3:30 pm. That’s when Olive and Miles (7 and 4) typically came home from school, and I’d reach down far for some strength and get up to greet them as they walked up the driveway smiling or skipping or holding art they made as though it were a proud flag.
It was nice being around them. I really do treasure my role as an aunt, even if I can’t do more and play longer without tiring out. I was able to see Olive’s first performance in a play: School Daze. It was about school, and how school is hard. Can’t disagree with that. It felt so fun to go and cheer her on.
I’d meet them at the beach, but it’d be four hours after they’d already been there. But that’s the great part about kids (and dogs.) No questions. No backstory required. They’re just glad you’re there.
A beautiful part of children is how adaptable they are. They don’t seem to mind that I’m supine 80% of the time we’re together. Kids can tire you out, but they can rejuvenate you too, much like the ocean. Luckily there, I had both. And those two made me feel more alive than I’d felt in a while.
I like these pictures because they fit in my fantasy world where things are normal and that’s fun to pretend sometimes.
I guess being around the whole family helped re-tether me to the world. Seemed I had floated away from it, or maybe it was the world that had floated on without me. Either way, once I was home, I didn’t bask in the solitude or the quiet, like usual. Reuniting with Monty always makes me happy, and is the symbol of “home” to me. Otherwise a harsh reality settled around me that suddenly I was sick with no one around during the day. But it didn’t feel like respite.
In Miami I would often just listen to Estee on the phone, or working on some project, prepping food for dinner that night, caring for the twins. As my grandma would say “She’s a busy body.” I got used to the background sounds of people living, and despite not participating in it, it was comfortable to me hearing it go on. Comforting. A reminder that life moves continues on, no matter what you’re wearing or what room you’re in. Of course that same fact when you’re in the same four walls for months can feel worse than unfair. It’s a pitiful thought, but it feelsvery real that the worlddoesn’t need you at all. (That isNOT true and Idon’t believe that in any format all. It’s your egomessing with you, and it’sdishonest. All of it)
I guess the drastic change, whether it was the lack of kids to make me laugh or of late-night life talks after the kids went to bed, they all made my life at home feel disconnected. My mom had left for a trip to Colorado the day after I returned and I suppose what I normally call solitude began to feel more like isolation. I had this feeling that I’d probably had enough solitude to last me thru another decade.
I surpassed my wordcount by about 5,000 words. I have too much to say because I put this off too long too long and that’s what happens. I’ll let this fly and hope things lighten up inside me, then I’ll do a little better by saying more with fewer words next time. That’s the ticket. Between now and then, Stella is working on getting her groove back. I’ll get there. I always do.
Having the chance to travel anywhere is always a gift no matter how large a cluster it usually is, and I try to remind myself of this no matter where I go. The process of going anywhere can so often be grueling in just the exhaustive process of preparation before you even leave the ground. But I’m lucky I’m able to do it at all, so I pinch myself when I catch those curmudgeon-y thoughts pop up about the unconscionable sound of airport bathrooms and the logistical nightmare of planning around 7 different doctors. But you prepare well and you try to go with the flow and be grateful you’re making it out anywhere into the big chancy world. A change of place can do wanders.
I’m back in my half-hometown of where most of my moms family lives and it’s always feels good to be back. Sometimes it feels like a dream that we ever lived here, like it was so incredibly long ago when it really wasn’t. It even smells the same, and I’m not being poetic. Grand Junction has a dessert flower, pre-rain, stony smell to it, recognizable as soon as you step foot off the plane. Like all smells it brings back a lot of memories, most of them good, rose-colored childhood memories. It’s also a reminder that even though the South always comes to mind when I think go that word, home, New Orleans in particular, having a huge family in one place feels rivals that same feeling. I’m here for my cousins wedding, a girl who’s diapers I really did used to change. As much as time can feel like it’s hardly moving at all, a wedding always does the trick. Hard to believe, fun to see, good to be back.
The scenery is so different here and the weather is exceptionally preferable to that of Louisiana in the summer. I mostly mean that in the sense that the humidity factor lingers under 30% here, and going in the shade will actually dry you off if you were to break a sweat, and the nights—they do this thing where they cool down! Considerably. I’ve probably become a pansy since living in a tropical climate, but I actually require a sweatshirt at night. Ridiculous.
I feel happy I was able to make this trip. Of course, I am a sucker, over-protective and absurd companion to Monty, so traveling without him actually means I miss and worry about him. It’s a dog, Mary. How many times I’ve heard that phrase! And it’s understandable; I admit to being obnoxious about the dog, but hey, we’ve been through 10 years of hard boiled life together, and that decade has been a roller coaster of triumph and tragedy that has challenged me more than any other time in my life. But all the while there’s been one constant, one love that’s stood by and treated life as though all of this were supposed to happen–as though nothing really happened at all. There’s a strong bond that this kind of constant forms, and Momo and I have it. Friends, boys, family, have all drifted in and out, because that’s just how life works, but the dog has been there every morning, sick or well, and every night at my feet or by the side of the bed.
The fact that he’s adjusted to my life changing the way it has, has always held an underlying encouragement for me, I think. Some contagious perseverance, that while circumstances change in big and small ways, there is still always a path back to your self, and it doesn’t have to revolve around anything external. Before getting sick, my thinking was more along the lines of the latter. I’m still learning how to do it of course, but at least I see it’s possible, and I’ve discovered myself in places I would never have thought to look before. Monty has adapted to all the ways I’ve changed, and so I take pages out of the Life and Times of Monty all the time. Dogs are so good for people, and Monty has been a huge gift of grace for me. Just loving him makes me happy. I know I won’t have him forever, but I’ll always have what this decade of he and I has brought to me. It’s a love and an experience that has actually become a part of me. It will always be there, and I hope I’ll always use what I’ve learned. From a dog. What I’m getting at is I miss my dog OK!? He’s in good hands though so what I am babbling on about? Jeesh.
Colorado. Right. It’s nice here. When you’re sitting on a bench outside and it’s a dry 75 degrees and you’re surrounded by mountains you think Wait, why don’t I live here again? I always wonder if my family will all end up back in Colorado some day, one by one. It’s not totally out of the realm of possibility. But there’s just some part of me that lives and breathes in the South, in all its ridiculousness and crappy weather and cock roaches the size of your hand, I find it easy to call home. I guess you can have multiple homes and they all live inside you instead of the other way around.
My grandma tells me how often her and my grandpa moved while raising my mom and her five siblings. She loved it. She always said it was adventure, they made new friends easily and by now in the later stage of her life, she has friends and family all over the country. She never sounds sadly nostalgic or mentions the awfulness of goodbyes when talking about leaving a place behind—which is where we differ. That idea scares me to a somewhat dumb degree. I don’t remember always being this way. I studied abroad for a semester in college, and it was the happiest time of my life. I get nostalgic about it a lot, but I should be more grateful than anything that I was able to do it at all. I’ll always have a little town in France I can tell stories about. Besancon—a somewhat unexceptional place, perfectly provincial and French with little English spoken. I loved it there. I was slightly afraid to go and yet I made some of my best friends within the first two weeks. I fell in love. I wrote and became more of who I’d always been but never completely let materialize. I learned how to be happy again after The Year the Universe Shit On My Family. It’s funny how just a change of place can change everything, and for me, that year, it really did. I’ll always hold those memories as if they were tangible items in a lockbox. Maybe one day I’ll go back, maybe I won’t. But maybe because those memories are so alive inside me, so much so that I dream of the place and the people all the time, that it doesn’t matter ultimately. In my own way, I’m still there. And it’s still here in me. I expect it will always be that way.
Right now I’m writing from a house in Vail Colorado, at roughly 10,000 ft above sea level. In Grand Junction the altitude wasn’t an issue at all, but since we arrived here a few days ago, I can feel a marked difference. The air feels too thin to adequately inflate my lungs, making me perpetually catch and take a deep breath. It’s like there’s a good sized monkey sitting on my chest at all times. All that would be no big deal, but the dreaded weakness crept up the first morning here and hasn’t left since. I’ve been pushing it so maybe it was a crash just waiting to happen. But it feels more like an altitude thing. So I’ve surrendered to going out and doing things, which hasn’t been hard because the view from the house and seeing the wildlife (in the wild!) and spending time with family and has been more than enough and worth feeling like a useless limp noodle.
Every morning and night the deer come right up to the house to eat. Yesterday I saw a mom and her babes, a young buck and a doe. The buck was the last to leave, but first he looked straight up at me on the balcony and we stared at each other for what felt like forever. At the end of that long, quiet gaze, a sports car that looked like the bat mobile and was loud as a jet engine revved its gas as it drove down the mountain road not far below us. I swear the deer simultaneously rolled its eyes with me. I had this recurring thought of What a moron! as the sound of the bat mobile echoed off the canyon down the weaving road. I don’t even know why really, I guess because I hate noise. But I also couldn’t help thinking the young buck was thinking the same thing. Who knows, maybe he’s into sports car by now.
At any rate, it’s incredible to be in the middle of the wild. It’s too bad I’m a slow moving wet blanket taking up space and hogging all the oxygen. But the family doesn’t seem to mind, and the surrounding beauty makes up for any physical discomfort. Waking up to mountains is something that I’ll always hope is at least an intermittent part of my life. I think returning to sea level tomorrow, to the crushing heat and weighted humidity, I’ll take a big wet breath of air, maybe finally catch my breath, and I will definitely know I’m home. At least, at one home.
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.
100 million dollars. I’ve never lived in a world where that figure represented an actual amountof 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.
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.
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’msorry 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! .
I’m well aware of your rare but genuine lack of sentimentality, and me addressing you on Valentines Day, one of those Holidays that makes all the whites of your eyes show when you roll them, is at least a little funny to me. I didn’t buy you one of those trinkets we often laugh at together. A “Blessed” keychain or one of those wooden picture frames with the non sequitur adjectives sketched in, meant to communicate love I guess. Love. Family. Hope. Frying Pan. Coffee Beans! Maybe we’re too young to be such skeptics. Maybe it’s our hiding ego, projecting superiority that we don’t need kitschy picture frames to allude to what’s real and shared inside of us. I’m in the card aisle at the pharmacy looking at a criminally large sized teddy bear holding a heart. It says I wuv you on it. It’s similarly tacky, but I consider purchasing it just for the laughs I know we’d have due to the scale alone; I actually don’t think I could carry it on my own. Then we’d feed it to Monty and watch him go straight for the eyes, as always, and fill the room with the cotton candy innards of a fifty dollar bear. But I hear your words play out in my mind “Don’t ever waste a dime on crap like that for me.”
I could lament about the commercialization of Valentines Day, but I think it’s all been said before, and I already know you’d agree. In fact I’d bet the farm you wouldn’t even bat an eye were the whole thing eradicated. You might not even notice! You’re funny. It’s not that you’re distracted, unaware. I’d suggest it’s the near extreme dedication to living a life of unwavering, powerful love, that is a fireworks display of a spectacle to watch. But for a lucky few, myself included, it’s a humbling miracle to be the recipient of. It sounds so dramatic to say, but I stand by that belief. It’s not hard to do. There have been plenty of reasons for your heart to have closed shop by now. To crack and break and crumble; call the whole thing off. And yet I’ve witnessed it come to the edge and never truly break. Instead I watch it explode like our day lilies in the spring, I watch it grow, astonished, in times that might normally make a person very small. And still yours expands, stretches, finds strength somewhere far in the depths and suits up for another day, knowing well the many things at stake when we agree to live a life. When we agree to love deeply. I don’t know exactly how one attains the capacity to love like this. I can only speak to the immense gifts of wisdom and friendship and compassion it has provided so many lucky ones, and me, knowing too well that ‘thank you’ isn’t large enough a phrase. I think how redeeming and salvational some of its outcomes have been. We’ve all experienced the pang of loneliness, and these last few years have shown me with unbridled truth just how far off and away we can feel, whether in a crowded room or a self-made island. Illness lends itself to its own kind of solitude, that can swallow you up whole if you aren’t prudent. Never have you let me drift too far down the rabbit hole. Sometimes sitting in a room with you, watching The Voice or Scandal or something I have no particular interest in, I feel wrapped in a sanctuary at the center of cupped hands, protected by the thick walls of a steadfast love that I know can never die. For two stoics like us, I can’t help but think ours is a Fairy Tale love, without an ending. We both know there won’t be one. Maybe I’ll submit it to Disney.
I keep thinking of this moment. A grey morning in December not long ago, I was more sick than usual. My central nervous system inflamed to a point that I could hardly tolerate sound or speak. My skin was buzzing, my hearing hurt, my thoughts and words felt and emerged mangled, and I couldn’t exactly articulate what was wrong. I felt like a shaken up liter of coke, hardened and about to fizz out everywhere, but there was no outlet. No where for the ‘fizz’ to go. My nerves felt inside out. When you came in the room, I tried to express what was happening but had trouble; honestly I hardly understood it myself. You didn’t look away, or demand answers or try to immediately “fix” the enigmatic pain I was in. You only said a couple words to me as you sat down on the couch and cupped your hand on the back of my head. “It’s going to be OK Mary,” and your voice cracked when you said it. My body felt as if it collapsed inside, calmed with this soundbite of peace, and the pressure slowly eased from that liter coke bottle. Tears came streaming down my face. I wasn’t that sad, truthfully. Certainly, all of this has been a trying time, for all of us, but there was a lot happening at once, my mind and body both being pulled and torn in different directions, and your very simple words allowed me the outlet. Permission. It’s pretty common for the tears to come when I feel so overwhelmed, overtaken physically. But it wasn’t your words exactly that moved me and conveyed your love with such depth. It was that your voice trembled when you said them. Just barely, and you’re not a crier, I know. I believed you, too, that it would be OK, but in that moment, you saw me. Accepting there was no quick answer here, no advice or platitude that could lift my heavy burden, you did the bravest and most beautiful thing a love can do: You sat down next to me, you put my hand in yours, and you shared what would normally just be my burden, my pain. You didn’t take the pain on, but you faced it with me. If only the world knew they didn’t need perfect words or answers to comfort and relieve us when we’re in the thick of pain. If only they knew that Love listens far more than it talks. A shoulder can mean more than a mouth. Love shares, it communes and confides. In joy and in pain. This is love. Our love. You helped carry the parts that I could not, and turned on its head what felt like momentary hell into saving grace. Just the memory of it strengthens me now.
This made me think of Nepo’s definition of Love. One I come to again and again, the most eloquent I’ve ever heard, and I often find myself reciting the words in my head: talking with friends, watching birds, kissing Monty. Somehow through your small action made with great braveness, your love materialized in a way I could not only feel inside with warm intensity, but could touch and see it, feel it in your hands. His definition for love is only this: Sudden Oneness. How perfect these two words capture what We shared that mangey morning. I warred with my same broken body, but I was also slipping into the outskirts of doubt and hopelessness; a place you know but helped lead me out of. His words so perfectly explain why when you love someone deeply and true, that when they cry you cry. When they’re happy you’re happy. Their joy is yours and vice versa. This is the beauty and brilliance of the oneness from love: lightening burdens and multiplying grateness. My tears continued but something about your unconditional nature made them begin to carry new truth in their waters. Hope, I think. Surrender. Reassurance. But it was this small gesture that mattered most; allowing me as the mess I was, seeing and hearing me and not turning away or trying to quell it with empty phrases. I know how hard it must have been for you– the only other soul in that dark room, while mine laid strewn on the floor like a discarded garment. It’s not that you saved me, necessarily, but you saw me through the darkness. You stayed. So many fear that stillness of pain, enduring the murkiness of life when there aren’t easy answers to offer someone. You helped see me through it, bring my tired heart back into the light, ready to try once again. But first you let me die a little. Shed a skin I didn’t need anymore. Another testament to what brave love can do. Little deaths prevent big deaths. That was Nepo too.
It’s interesting, but when I recall this whole ‘event’ now, we seem to be alive inside a pocket of timelessness. There we are, the two of us, enduring what we did, frozen in an exchange that felt unearthly, and I can’t for the life of me feel or remember the passing of time. The moment is still alive. The lessons are wide awake, and they pour through so much of me: My fingers when I write. My soul when I’m discouraged. My intellect when my respect for the novelty of life drifts– I think of you and our moment and I know that there is meaning behind the pain, but it requires seeking. And luckily we don’t always have to do this alone. The Oneness that enveloped me, I think in fact may have been my first real glimpse of Forever. Or Eternity. Whatever the word for that otherwise incomprehensible concept is, for a fleeting moment I caught it, like a fast grab of a buzzing fly, followed by thick silence. In this excessively brief lapse in spacetime, I glimpsed the two of us–we were not just not apart, we were the same. We were one another. And the comfort was greater than a reunion you’d imagine would bring great joy. It comforted me. Humbled me. A powerful experience no doubt, but mostly mom I’m just plain grateful to know and learn from you this way. You’ve mastered a difficult and necessary art, and expressed and given it the way that you do, it’s something that will last far after you. And me. And my children too. Perhaps like Einsteins theory come to life one hundred years after the fact, that little ‘blip’ on a device recording an explosion a million years old, your love ripples will be felt long after you’ve gone. This is the miracle of true love. It’s so huge and yet it can be easy to miss. Like looking for mustard in the fridge tirelessly and finally coming upon it on the middle shelf in plain view, right in front of your eyes.
For me, this is incredible news! I half-knew already this was true. Losing and still knowing dad, our love somehow still growing, I knew it had to be real and not just the stuff of voodoo or fairytales. So I rest more assured now. One day you’ll die, and if life is good to us, it will be before me. But I don’t fear this occasion the way I once did. I know it will hard. The pain will be deep, as loss is not a one-way street. You lose more than a person, you miss a piece of who you were with that person. But like my clearly favorite Nepo says, Grief is a sign we loved them well. It’s in living this life, that when we give and receive love in its pure form like this, unconditionally, that it sustains and lives on. It works miracles! And it removes the sting and surprise of death, a thing we treat with pretty odd behavior in my opinion. But anyway, I can’t lie. I’ll be a mess. A sobbing heap on the floor. A shaken up bottle of coke. And where will I go? How will I recover? As I was taught of course–I’ll remember that moment of your bravery, to see your kid in pain once again and have to surrender; to be at peace with the mystery of these things. Just as you saw me through that, I learned that these moments actually do pass. That life does go on, the pain isn’t forever, and we wipe up our mess and keep going. I learned that because you lived through it with me, not because you sent a card with a bow that said “This too shall pass! Call if you need anything!” You are living love, in a beautiful form, and you are doing incredible work in the world because of it.
Perhaps by now it’s become apparent that I’m single. (Haha) But I can’t think of a more deserving Valentine, a bigger barer of gifts who never seeks out recognition or accolade for loving this well. You seem to perform the duties of love effortlessly, and I’m not only grateful to have you around and receive them, but I’m happy and feel lucky to learn what love is through you, how to give it and accept it from such a master as yourself. You’ve been through enough pain for 10 lifetimes, but I’ve never see you throw in the towel or give way to bitterness. Sure, you’re still a human being and a mother and you’ve made your mistakes. We all have. But you’ve never faltered on love and it seems to grow larger and more powerful in happy and hard times. Perhaps this is what the pain of experience does for us. I don’t know. I’m still learning. But watching your resilience and continued faith in life, in things bigger than you and me, in good things, in eternity, I know I’ll never stop seeking the answers. I’ll never stop trying to find the good, the value, the meaning in every kind of experience. Including the dark ones. Perhaps especially those. Thank you. For all you’ve done and continue to do. I don’t know how you’ve not collapsed yet of exhaustion, but maybe all that loving you do is an energizing force. It certainly is for me. Thank you. Keep going.
Oh yeah, Be Mine?
I love you.
Health, Happiness, Modern Romance
P.S. I extend this letter to Marc, Doug, Nick, Amelie and their significant others for pitching in in all kinds of ways, helping carry me through the crap times, and loving me so well. You are all my angels. Thank you.
Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem. At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.
Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.
Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.
On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.
I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of. The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.
So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?
Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.
I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.
Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.
It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.
By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.
Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.
The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.
I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,
“We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.”
I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder.
In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.
Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.
I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.
It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.
Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege. And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow, the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion.And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.
But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.
Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am. But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.
I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.
It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.
It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.
But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense. I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.
Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.
On Thursday I awoke to the faint scent of change in the air, not unlike the first brisk breeze you feel in late September. But this was not Fall. This was something called ‘thirty’ and it awaited me, ready or not. I didn’t know how it would go down or exactly how I felt about it, only that behind mundane tasks and in the corners of rooms, there it was; stirring, growing, counting down. It caused nervousness, yes, as change often does, but it also caused excitement and irregular bursts of recklessness. At the Circle K I always frequent, I ignored regular intuition when I saw a snickers bar and desired it, but had not yet eaten dinner. I watched myself grab it as though it had always been mine and Circle K had taken it from me. I plop it on the counter feeling proud and dangerous. I’m turning 30 soon, I don’t give a shit.
On Friday, the upcoming change is no longer a scent in the air, but a big red X on the Calendar. I only have a few more days of my twenties and I need to make it count. I have an outdoor lunch with college friends. I keep the conversation fresh. When it hints at boring I steer it another way. We can’t be talking about strangers I don’t know or things I don’t care about at my birthday lunch! It’s so self-involved but I don’t care, I’m trying to get to the root of something. I ask my friends a lot of questions about the states of their lives, all of which appear far more together and grown up than mine. (Jobs, marriage, etc.) But beyond that I’m trying to gather information. Something within me is trying to assess whether we’re happier now than we were five years ago. I guess I need to know that life gets better with age– a concept I’ve heard but don’t wholeheartedly buy yet. The conclusion is nearly impossible; there are too many variables. When one friend suggests mani/pedi’s I think YES. I need my nails to be in shape for this milestone. I struggle choosing a nail color that complements my mature new age but also suggests my daring nature. (Snickers) I pick a bright, corally orange color. It’s a risk. It’s no ‘soft rose’. But I’m turning 30 soon. Let’s do this ‘cajun shrimp’!
On Saturday, the softest sound of a ticking clock can be heard everywhere I go. Is it my ovaries? Is it the countdown of my ending youth? Hard to say. My body is tired from the muted angst of the last few days and the poor diet choices I’ve made on account of feeling ‘risky.’ I rest a few hours while second-guessing my nail color and making a mental list of people 30+ that are still rocking it. Oprah..Rob Lowe..Kanye.. Next I head to Magazine Street to find the outfit I wish to turn thirty in. I visit my favorite places, and when the sales girls hear I’m turning thirty tonight they say “Awwwwwww” as though I were a wet, lost puppy. They also become exceptionally helpful. Like Don’t you worry girl, we’re gonna get you through this. As I accrue a large ‘no’ pile in the fitting room, finally I’m brought a navy blue floral romper. In the mirror I think This is it. This is the one. Sophisticated print but youthful as a romper. Also my butt looks really good.
Tonight I will have drinks with a couple of friends at Cure, a snazzy bar where our close friend works. I shouldn’t drink. My body straight up rejects alcohol in the form of migraine and then general disintegration of entire body systems, but the cocktails here are good and of high quality. They’re made by mixologists! And at midnight I’ll leave my twenties forever, so gosh darn it, I’ll have a drink or two. A few friends retire early leaving behind my BFF Kaitlin (aka Matt Damon) and the progressive boy I’m dating. He doesn’t like this ‘ritzy’ bar. Something about everyone having on the same outfit. Our friend brings “shots” for the stroke of 12. When the iPhone flashes midnight, we yell and cheers and drink the shot, which tastes like youth mixed with jolly rancher. Kaitlin snags this gem of a photo which at least half conveys the mixed feelings I had.
I am technically thirty now and I feel the burst of recklessness. Should we get forties and go to the park? Light some fireworks maybe? But the progressive boy I’m dating suggests I take it easy. We still have my actual birthday tomorrow. He’s right. We go home.
On Sunday the big day has arrived. I’m getting phone calls and texts while I lay in bed and I’m like God, I love birthdays so much. I didn’t even have to do anything and look at all this positive attention I’m getting! Thanks mom!I soaked in all that love pouring in. Then I realize the small get-together at my pool is supposedly starting in an hour. I am crazy late, it is raining, and the pool turned green overnight. With the help of friends we pull it together. The group trickles in and three different people give me flowers, which shoots me up higher over the moon than I already was. A few of the people at the party I’ve never even met before, and yet somehow almost immediately, a fun and comfortable dynamic forms. One of those perfectly random social events that could never emerge through planning. We swim and philosophize and do birthday things, including passing around my cake in a circle and taking large bites out of it face first. (Kind of what one-year-olds do on their first birthday) We play a very loud game of Scattergories and things turn competitive, quick. There was erratic dancing and a four-part belting of It’s All Coming Back to Me Now by Celine Dion. At one point we were gathered around watching Blue Planet in awe of the earth like Whoooooooa and Woooooooooow! Looking around in that moment I thought Dude, this is perfect. We stayed up late. I guess adults still do that.
On Monday I awake to the haze of a good-time had and party remnants littering the floor. My body hurts. The pool looks hungover. Even Monty is lethargic. I briefly assess the damage and ignore it, then eat a ginormous bowl of Kashi cereal and fall back asleep. When I re-awake, I attempt to “tidy up” but it’s useless. I’m moving like a true geriatric. There is that Sunday type of melancholy lingering that comes after you’ve had a really amazing time with people and now you’re alone in the aftermath, remembering the fun. I plop on the couch trying to evade it and spot a large vase holding all the different flowers I was given. It’s cliche and sappy, but staring at it I feel a tinge of gratitude and then it explodes exponentially. I don’t feel old, I feel lucky to be alive and to know the people I do. I feel grateful that the people I like actually like me back. So many showed their love to me–In person, people from the past, strangers on the internet, my best friend from kindergarten on FB. It all just overwhelmed me for a minute. I’ve got a family that’s solid and friends who are true and a dog that jumps high and loves me endlessly. If I were a sap on Twitter I’d be like Feeling #blessed.
But I am not.
Turning thirty didn’t change much about me. I feel the same, my battles remain and I’ll continue to do my best. But unlike other birthdays, it finally took me outside of myself, even though it began the opposite. Among the cups and pizza boxes, I felt weirdly inspired thinking of the people in my life. It’s not that they love me, it’s that they love at all. That they’re out there with their own battles and they’re trying too. There’s no one way to do it and we’re all just learning as we go. But thinking of them made me want to try harder. And do better. Not because I’m 30 but because I’ve been shown such incredible ways to go about living and loving– It’d be a waste not to learn from such awesome people. And that’s why it was silly relying on others to prove to me that life gets better with age. Surround yourself by the right kind of people and they are the proof. Life gets better because we get better. We know ourselves more and just that knowing by itself makes so many things easier. For me I’m realizing it’s not about trying to know and understand everything but accepting that I can’t know it all. There will always be mystery to life and part of the deal is living here in the in-between. I think there’s a good time to be had in the middle. There certainly was last night. Anyway, it’s a simple concept I guess. It just took me twenty-nine years to make some sense out of it! Twenty nine years and five days, that is.
Thank you to everyone who helped me ring in 30. It was truly righteous.
Do you ever go through something that is both presumably necessary but incredibly hard and subsequently feel the weight of the world baring down on you as if the gravitational pull changed and it was all on account of you doing something possibly stupid but possibly necessary? Me either, life is easy and fun!
While my health has to continued to sustain for reasons I can’t entirely know for sure, I’ve had some personal experiences which are difficult and painful and every time these things wash over me I examine why life has to be hard (as if I actually expected it to only be easy) and then I wonder does life actually have to be this hard or am I just doing it wrong? I don’t know the answer to that one. I guess we can only learn as we go. I find myself telling Monty to never fall in love because it leaves a mark on every part of your life and ultimately it changes you, whether you wanted to or not. But then I watched the neighbor dog humping his owners leg and considered that obviously the alternative isn’t so much more grand. Though there’s an appeal to that leg–it’s not going to keep you up at night with heartache and strife. Or maybe I’m too quickly assuming here, maybe I should ask the dog.
Of course this fantasy that life would be easier and less painful without this or that is just that: a fantasy, a slight rejection of reality. But maybe more detrimentally, it presumes that somehow as humans we know better, and we know the answer to what would make life easier or more tolerable. As if life isn’t some ridiculous, complex mystery that has an infinite amount of working parts we as finite humans can only momentarily grasp, if ever at all. And I’m not struggling with an idea that every human for thousands of years hasn’t experienced pain from and questioned the value of. We’ve all been through it. Wondered if the pain in the end was worth the utopia in the beginning. I like this quote about it: “Love is the voice under all silences, the hope which has no opposite in fear.” by e.e. cummings. Would I really choose an option where falling in love wasn’t part of the equation? Duh, no. That’d be insane and cowardly and boring. Love is a remarkable gift, with perhaps its best quality being that of illumination. I like how sometimes it picks us, even when we’ve turned our backs on it or given up on the idea. I like that it takes us places we wouldn’t go on our own. I like that it makes even a worn-down curmudgeon feel giddy and silly and do things he thought he’d never do. I’m thinking of my grandma now, who at 86, has a man named Harold (a few years her senior) who is madly in love with her. I saw it with my own eyes. They would marry if only she’d accept.
Harold had been living at her facility for a few years when she moved in. He has a military haircut I imagine he’s had for 50 years. He speaks concisely and says what he means. There is density to both his physique and his words but a subtle softness you pick up on behind it. Harold had been sitting at the same table in the cafeteria for years, often alone, seeming annoyed by even the thought of socializing and especially at watching others partake in it. Sometimes he looks like he wants to press mute or fast forward on the whole charade; a sentiment I’m familiar with. He eats and drinks the same thing at his meals every day in a very particular order–part of the routine involving peeling his fruit and sharing half of it with my grandma. The ending involves hot tea with a lemon at a very high temperature that if not fulfilled, as sometimes happens with new employees or forgetful old ones, gets sent back. He waits. Sometimes he scoffs, others he sits in silence. I ate with them a few times last summer and couldn’t help but think of Jack Nicholson ala As Good As It Gets, with a little less show but just as much intensity.
Harold would be the last guy you’d expect to get all doughy-eyed and follow a girl around like a love-sick puppy. And yet, here he is. Three years in to my grandma’s stay at The Atrium, Grand Junction’s finest assisted living home, and Harold has fallen over in love with her. I’d like to say I’m exaggerating for literary purpose but truly I am not. I saw it with my own eyes. It started as a joke in the family– OOooooh Grandma! Hanging out with Harold again?! Grandma has a boyfriend! Hehehehe! And then slowly it was revealed to all of us that for him it wasn’t some crush, he’d truly fallen for her. He switched tables to sit with her. Even thought that meant there’d be a certain amount of socializing. He comes over all the time to watch Westerns at her apartment. He on the couch, she on the recliner. Of course half the time they fall asleep 10 minutes in, but no matter. The man has it bad. And something about it completely excites and inspires me. It turned the tables on rules I had stupidly self-made on love and life and age. Very stupidly. I am constantly discovering how much I don’t know. But I love this story. I love that the employees there asked my grandma what she had done to Harold. What happened to the old crotchety man rolling his eyes in the corner? Now he was partaking in group activities? Calling her on the phone? Feeding the ducks? Switching tables?!! While my grandma tries to insist they’re only friends, (oh my God life never changes) and that she finished that phase of her life after my grandpa died, it’s clear she’s enjoying the time with him as she should. Albeit rejecting his proposals and insisting he partake in more bridge games. I love it all. They’re is something truly hopeful in all of it. Anything that flips our predefined notions on their head can only be a good. It’s illuminating. I imagine it’s that way for Harold, too.
Maybe it’s different for her. She clearly likes him being her friend and enjoys the companionship. Perhaps in this last stage of their lives, my grandma’s old stoic German ways will prevail and she’ll reject the romantic advances and they truly will be just friends. At 90. And that’s fine too. Of course I’m secretly hoping that one day she’ll weaken, she’ll let him sneak a kiss. Maybe she already has. I don’t know. But watching this all unfold fills my heart up with something good. Something hopeful. My grandma’s advice to me has always been that boys like girls who are mean to them; that she hardly ever let a boy get too close or too much from her. To work on your own life and don’t design it around some boy. And I knew as a young woman she had a lot of interested suitors and broke her share of hearts. In fact she pushed her first boyfriend into a ditch when he tried to kiss her, which she said of course, only made him try harder. And that’s been her advice to me; to push the boys into the ditch and watch what happens. Honestly I take her advice to heart. I love listening to her old stories. Her simplicity about life. She is a very happy person who loves her life, and so for me her advice carries a lot of water. I know they don’t have the internet at the Atrium, but Grandma, if you’re reading, give Harold a kiss for me. (I mean you can’t push the man into the ditch–he’s 90!!) For whatever reason watching the two of you, and specifically him, has been a very good thing for me, and I’ll probably always carry it with me.
I feel the need to begin here by expressing my deep gratitude for the response to my last post. As usual, my decision to publish a raw and somewhat sad update was not without hesitation on my part. My preference is always to write in a happy and funny and optimistic tone, even if the words I am writing are happier, funnier and more positive than I actually am. In some ways it’s therapeutic, and in others it’s a challenge in creativity and authenticity. As much as I’d like my writing to point towards the fun and the funny, life is not always that way, is it? Sometimes it’s overwhelming and can feel too heavy to bear. I resist putting words out there like that for maybe the same reason I never liked to cry in public or ask for help when I needed it. It means, gasp, I’m not perfect. And that’s what the ego fears a lot.
Over these last few years, the pride that held tears back and forced a facade that was untrue began to crumble. This writing project entered the picture when those superficial layers were starting to shed, and consequently this blog has some really vulnerable things in it, which can leave me uneasy. At the same time, I can feel that my most honest posts are the ones that connect most with strangers. (Duh) And that doesn’t mean they have to be in the tone of “True Life: I’m Sick All the Time.” Humor can be just as much genuine and communal. It’s the one I prefer, it’s just not the one that always is.
Anyway, it’s a battle inwardly and materially, but I just really need to extend my thank you to everyone who received my words and reciprocated with such loving support and encouragement. How can we lose faith in humanity when across the world, people sit down at a desk to uplift and strengthen a stranger with words? It’s a two-way street yall! I’ve been reflecting on so many responses from people I will never know, and that alone is healing. On a form level, it makes me trust in the direction that the blog is taking–one I did not design. On the formless level, it had me feeling so much better despite being so sick. That transaction served such a greater purpose than “You should try eating more JuJu Beans!” And I attribute that to all of us. This doesn’t feel like a solitary project anymore. So thank you. That’s all I’m saying, THANK YA VERY MUCH.
Now, onto the plague. I’ve been puking my guts out. But that’s not the plague I’m talking about.
My siblings with their partners and children rented a beach house in the Florida Keys last week. It happened to be the same weekend as the wedding of a long-time good friend. For two months I went back and forth. Beach house or wedding weekend? (Assuming I could move) I could always go to the beach and fly home for Saturday night and make it to the wedding just in time for the festivities, right!? But with the way I’ve been feeling, my unsteady ability to sustain, my mom didn’t even have to tell me with her eyes this time. I knew I couldn’t do both. Or maybe I could, but the price would be big, and these days the price of choices like that are not just gargantuan but scarily long lasting. Crash days have turned into crash months, and the basic goal is, Don’t do things that could set you back so far.
Back and forth I went, and it was tortuous. It always is; I do this all the time. Both choices seemed correct and incorrect simultaneously. My indecisiveness is one of my largest sources of anxiety. I won’t get into the details of why one choice was better than another, there were many pros and cons to both. But often when it comes to my immediate family, they’re the default decision. I don’t get to see them a lot and they’re my lifesavers after all. They’re my blood bro! After my brother called me a few days before the trip, started describing the waves and the weather and a hammock outside, I booked the ticket and felt confident momentarily that now I didn’t have to suffer. The decision was made and now I could relax. I guess.
…Until I saw my friend who’s wedding I would miss and then saw all my old friends who I rarely see that would be there. And all the shit they gave me, it was more torture. What have I done?! I blew it! At the same time the trip was booked- let it go. You get to hang with your family on the beach. That rocks. That’s true. I got to the beach. I held my nieces and laughed with family around the dinner table eating fish my brothers caught that day. And then on day 2, I awoke at 5 am and had that feeling in my gut that something wasn’t right. And then at 5:30 I started puking up all those “not rights” I was feeling. I had caught the stomach bug that half of my family had experienced the week before. My sister was up with the baby conveniently and she held my hair and that was nice. An hour later with my face pressed against the cold tile in between cycles of puke bursts, I moaned and tossed: “Shoulda gone to the wedding. Shoulda gone to the wedding. BLLLLURGGGH” (puke sound)
I’m still recovering from that evil stomach bug and it’s a bummer. But the bug isn’t the issue here and I know that. I’m the problem. Shit happens that you can’t foresee or plan for. Regret and hesitation are such hinderers of the present. And we all know that the present is where peace lies. Happy is in the here and now. A lot of my unhappiness, and perhaps unhappiness in general, is being here and wishing to be there. I could easily have gone to the wedding and convinced myself I was missing a beach trip of a lifetime. I could have tried to breakdance and broken my butt. (That almost happened once) So while I lie here sick on an air mattress, in the living room, on vacation, (once again) I’m trying simply to just be here. I’m looking for the lesson. I’m trying to focus and trust in the experience I’m having instead of the one I did not. Thoughts like that are like swimming up-current–they consume and exhaust me even more. It’s just another battle that’s no use fighting.
I don’t know how long I’ve been plagued with indecisiveness like this. Though I remember even in middle school spending far too long picking out deodorant at Target, never certain I would choose the right scent. It’s been a long time. As always the first step to breaking a habit is awareness–creating a space between the routine reaction and a healthier one. Maybe it starts with knowing myself more. Trusting myself more. But maybe it’s simpler than that. In stillness the answer points to this idea; be where you are. Wherever that is.
I be sick in Miami! And it’s fine! Whatever!
Here’s something Tolle says: If you resist what happens, you are at the mercy of what happens, and the world will determine your happiness and unhappiness. …To be in alignment with what is means to be in a relationship of inner nonresistance with what happens. It means not to label it mentally as good or bad, but to let it be.
Pretty good no? I’m marinading on that one. Ew, marinade. I’m still queazy.
Most people have at least one box filled with kept remnants from their past. A lot of mine is in a brown moving box that says “Mary’s Stuff” on it, and for whatever reason my mom gave it to me out of the blue the other day. Maybe she was spring cleaning, or maybe just trying to downsize on 4 kids worth of crap in her house, especially considering that we’re all fully grown. Anyway, the box was in my hands now and last week during the indoor weather, I started rummaging.
I don’t consider myself a pack rat at all, but I also don’t know any actual pack-rats who do… But for whatever reason, starting in 6th grade…I started saving notes passed between me and friends, boyfriends, siblings, all of it. I kept them in a K-swiss shoebox. And this ridiculously faded, clumsily folded note that said “Mary” in terrible handwriting was one of the first I saw in the box, and as I started unfolding it immediately I knew what it was: A note from my 6th grade love, Kyle B.
Hi!! This is the “big surprise.” Well all I wanted to know is will you go out with me? Don’t worry about saying no, I don’t care. Well I do care, but, well uuhhmmmm You know what I mean.
Ms. Snifferjohn is a loser.
I like The Land Before Time it is like my favorite movie. Besides about a million others but that’s not the point.
Kyle B (Baseball Cursive signature)
*To begin, Ms. Snifferjohn was our substitute teacher and her actual name was Ms. Schneiderjohn but Kyle had nicknames for all the teachers. Especially subs.
The truth is Kyle had been my on-again off-again boyfriend since Kindergarten. It was all completely a matter of semantics. We were best friends and every now and then the title would change, and that was it. I liked him because he was weird and hilarious and made fun of everything. In 6th grade we finally hit first base and held hands at the roller rink. As we skated hand in hand to the cascading neon lights and what I can only imagine to be Jewel or Sarah Mclachlan or Chumbawamba playing, my best friend Brittny skated up to us with urgency. “You’re doing it wrong! Your fingers are so supposed to cross!” We were holding hands the old school way; the way you do when walking a child across the street. We fixed our technique and skated a few laps and then I don’t know what–got a sugar high from sour straws and Dr. Pepper probably.
The next thing I found was my retainer box from 7th grade with my retainer still in it. And yes, I tried it on. You have to! It only half fit. I never wore that thing, and lied to the orthodontist at every appointment. “Wearing it day and night?” “All the time!” Altogether I probably wore it 10 solid hours. But I didn’t get bad feedback from the doc so I felt OK about it. The best part? It’s a translucent baby blue retainer with a little earth icon in the middle and two little rainbows. I make terrible decisions under pressure.
One of my favorite finds? These pictures of my mom. I never see myself in my family even though people tell me we look alike. But when I saw one of these pictures, for a split second I glimpsed my face in my moms. Finally I could see it–I have her exact chin, the shape of her mouth, her nose and her “good-sized” head and big thick hair. Of course she is incredibly more glamorous and I love how youthful and in love she looks in these. (She was, this was a few months before marrying my dad) But it finally clicked. I am that woman’s daughter.
Next is a signed post-card from Dominique Moceanu. She was my second favorite gymnast after Shannon Miller. But I’m pretty sure she divorced her parents after they tried to take her money or something, right? Anyway, still got the card.
Then came a lot of stuff from high school, which only solidified my memory of how excessively terrible high school actually was. For example, take this note from my friend Meghan.
Can you believe it? This poor girls grandma died and all we talk about is my going to lunch with Tyler. I found about 6 other notes on this very topic. Then came notes about whether we had gone on a date yet and then whether or not we’d kissed. Reading the notes brought back my exact feelings from those four years; that I took none of it seriously. The boys..the scene..class..any of it. I tried. I wanted to be cool and sometimes I succeeded, but mostly I felt lost and everything felt really forced. I was so glad when it was over. That’s the best part about high school. There’s a true end to it. Soon it all fits in a box that you get to make fun of later.
Next is an essay test from my AP Literature class where we had to use principles from Machiavelli’s The Prince to analyze characters and events from Shakespeare’s RichardIII. I remember nothing from either of these, but I scored a high B on the test which for me and for the class, was very good. This must have been my last empirical display of effort on my part that year, because by the end I’d basically given up. I actually ended up failing Literature! And really for no good reason. I stopped caring and also I just sort of hated school. I guess that’s why I kept the test. To prove I was literate. (All evidence to the contrary given the content of some of these notes)
It’s funny that I write about these little treasures from the past today, because I also just found out that today is my dads birthday. He would have been…old, I don’t know. But I found old pictures of him and us together and it’s always good to see those and to remember. So many years go by and your life changes in so many ways. New memories stack on top of old ones and pretty soon you’re having to struggle to remember the sound of their voice and the things that used to be fresh. I don’t feel sad looking at them– I like to see proof of our happiness when he was around. I ache more out of a fear that I’m forgetting him. But maybe by him just being a dad, I’ll never really forget. He’s in me, and in all of us. Each member of the family carries a part of him with their own memories and I guess that’s the stuff that lives on longer than the person.
It also had me wondering if I’ll have a daughter one day who will look through her box of childhood leftovers. Maybe she’ll too see a photo of me and realize our connection. Maybe she’ll read this blog and wonder about my sanity. More likely? I’ll read this blog in 15 years and think OMG I was so stupid! Maybe that’s just how it works. You get older and grow and laugh at your old ways. Life has been hard but it’s been incredible too, and I guess I’m glad I’ll have these words to look back on–remember these years I was sick with nothing to do, but document my days of doing a lot of nothing.
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!
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.
There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.
I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.
I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.
Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless. So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.
As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!
So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.
Health, Happiness, Merci.
*P.S. On September 26th, this blog turned two years old. Yaaay.
My daughter is about to turn 13 and I’ve been smoking a lot recently, and so – in the wee small hours, when my lungs feel like there’s a small mouse inside them, scratching to get out – I’ve thought about writing her one of those “Now I’m Dead, Here’s My Letter Of Advice For You To Consult As You Continue Your Now Motherless Life” letters. Here’s the first draft. Might tweak it a bit later. When I’ve had another fag.
“Dear Lizzie. Hello, it’s Mummy. I’m dead. Sorry about that. I hope the funeral was good – did Daddy play Don’t Stop Me Now by Queen when my coffin went into the cremator? I hope everyone sang along and did air guitar, as I stipulated. And wore the stick-on Freddie Mercury moustaches, as I ordered in the ‘My Funeral Plan’ document that’s been pinned on the fridge since 2008, when I had that extremely self-pitying cold.
“Look – here are a couple of things I’ve learnt on the way that you might find useful in the coming years. It’s not an exhaustive list, but it’s a good start. Also, I’ve left you loads of life-insurance money – so go hog wild on eBay on those second-hand vintage dresses you like. You have always looked beautiful in them. You have always looked beautiful.
“The main thing is just to try to be nice. You already are – so lovely I burst, darling – and so I want you to hang on to that and never let it go. Keep slowly turning it up, like a dimmer switch, whenever you can. Just resolve to shine, constantly and steadily, like a warm lamp in the corner, and people will want to move towards you in order to feel happy, and to read things more clearly. You will be bright and constant in a world of dark and flux, and this will save you the anxiety of other, ultimately less satisfying things like ‘being cool’, ‘being more successful than everyone else’ and ‘being very thin’.
“Second, always remember that, nine times out of ten, you probably aren’t having a full-on nervous breakdown – you just need a cup of tea and a biscuit. You’d be amazed how easily and repeatedly you can confuse the two. Get a big biscuit tin.
“Three – always pick up worms off the pavement and put them on the grass. They’re having a bad day, and they’re good for… the earth or something (ask Daddy more about this; am a bit sketchy).
“Four: choose your friends because you feel most like yourself around them, because the jokes are easy and you feel like you’re in your best outfit when you’re with them, even though you’re just in a T-shirt. Never love someone whom you think you need to mend – or who makes you feel like you should be mended. There are boys out there who look for shining girls; they will stand next to you and say quiet things in your ear that only you can hear and that will slowly drain the joy out of your heart. The books about vampires are true, baby. Drive a stake through their hearts and run away.
“Stay at peace with your body. While it’s healthy, never think of it as a problem or a failure. Pat your legs occasionally and thank them for being able to run. Put your hands on your belly and enjoy how soft and warm you are – marvel over the world turning over within, the brilliant meat clockwork, as I did when you were inside me and I dreamt of you every night.
“Whenever you can’t think of something to say in a conversation, ask people questions instead. Even if you’re next to a man who collects pre-Seventies screws and bolts, you will probably never have another opportunity to find out so much about pre-Seventies screws and bolts, and you never know when it will be useful.
“This segues into the next tip: life divides into AMAZING ENJOYABLE TIMES and APPALLING EXPERIENCES THAT WILL MAKE FUTURE AMAZING ANECDOTES. However awful, you can get through any experience if you imagine yourself, in the future, telling your friends about it as they scream, with increasing disbelief, ‘NO! NO!’ Even when Jesus was on the cross, I bet He was thinking, ‘When I rise in three days, the disciples aren’t going to believe this when I tell them about it.’
“Babyiest, see as many sunrises and sunsets as you can. Run across roads to smell fat roses. Always believe you can change the world – even if it’s only a tiny bit, because every tiny bit needed someone who changed it. Think of yourself as a silver rocket – use loud music as your fuel; books like maps and co-ordinates for how to get there. Host extravagantly, love constantly, dance in comfortable shoes, talk to Daddy and Nancy about me every day and never, ever start smoking. It’s like buying a fun baby dragon that will grow and eventually burn down your f***ing house.
You can see the original post on Caitlin’s blog at Brouhaha
Thank you Giselle for the read! And congrats to my sister Amelie, who is a new mother today. It’s a good day.
I’ve neglected my writing routine for a solid few weeks and I attribute that solely to distraction. One particular thing. A person. It’s a person.
That person is Rob Lowe. Just kidding, it’s not Rob Lowe. But that’d be a funny anecdote wouldn’t it.
Unfortunately or fortunately, I have to be alone to write. (Duh) Very alone. And by that I don’t mean lonely, although it can get that way. But even someone in the next room, doing something else, watching some movie, talking on the phone–it all feels exponentially more important that I be a part of their experience in the other room, even if it is just watching Robinhood Men In Tights which for the record, I’ve seen. But someone being over there and me being over here smells something like missing out, and as a full-fledged youngest child, I’ve lived 29 years trying to avoid just that. I think all youngest children do.
I’ve been spending time with my unofficially official ex-boyfriend/boyfriend/best friend/comrade/casual dating kissing partner. And we spoon too. It’s all very simple. We’ve known each other ten years and been through a lot including tumultuous breakups and taking turns carrying one another. We’ve been through things that either harden you or strengthen you and somehow rounded out in the middle. It seems to me we’re on the same learning curve. It’s the only way I can explain how after so many ups and downs we still seem to find one another, each wiser from their mistakes, and seeing in each other something that has always been there. Of course maybe all this is way too analytical. Maybe simply he was my first love and I was his and some part of that just never goes away. Regardless, he went away this morning on an adventure. The kind people talk about but rarely actually embark on.
He packed his life in a green hiking backpack and is starting out in Nicaragua– and that is about as far as his plans go. One of his plans involves staying and working at a hostel near Leon, where he will lead expeditions to the top of a volcano and then get down by surfing down it. I remember I was eating yogurt in my pajamas, exhausted after doing something undoubtedly small and stupid, when he told me that plan. I laughed a little as I envisioned his day versus mine while taking another bite. “Our lives are so different.”
In that way he’s kind of my hero. For one thing, he’s been blessed with a body that works and he is using it to his advantage. Pushing it, training it, challenging it and paying very little. He is strong and coordinated and a fast learner. This is of course something I’ve been unable to keep up with him on. And that’s OK. I’m learning to be content from the passenger side. I’ve actually come to enjoy and take pleasure out of watching people do what they want and go on adventures and seek what makes them happy. You don’t need to be strong to do that. At a fundamental and simple level, this is where human beings can be very wonderful additions in each others lives. If we merely nudge our friends in the direction of happiness, we’ve at least done something.
It’s funny such a thrill-seeking adventurous soul would ever have any attraction to the sick bag of bones called me. I guess I wasn’t always this sick, but still, life with a chronically ill person can be slow-paced and sedentary and a downright pain in the ass. But I guess all of life isn’t a thrill. At the end of the day whether you surfed down a volcano or not, you need a good snuggle partner and I am a pretty DANK SPOONER YALL.
He doesn’t know how long he’ll be gone. At least six months, or until the money runs out. We made no real plan of contact or correspondence. I know that this is an adventure he’s going on truly with himself, and he should be free to explore everything along his path. No ties or obligations to the homeland. Clean slate. But on the way to the airport I felt myself squeezing his hand tighter than normal. I guess that’s to be expected when facing the unknown.
Then I had that all too-human experience of returning to a house after an airport-goodbye with that hush all over and the remnants of someone in all the rooms. It’s all a little quieter and things feel hollowed out; you know it’s the start of something new whether you wanted it or not. At the same time, my own adventure is beginning here. Now that I have my solitude back, I have to get to writing. And reading. And arts and crafts And following my own glimpses of joy. It may not lead me to volcano surfing but it could get me somewhere close. Like healing yoga or gluten-free breakfast cookies!
Anyway I never much write about my love life, or lack thereof, but it all feels sticky in my brain and I am hoping that by releasing this feeling I can continue on with other endeavors. I am happy for my friend who is following his bliss– and Gator if you’re reading, be careful out there! If you died out there I’d be really annoyed. I know I have to let go and I need not to lose myself in someone else’s tales. For a while there I was getting so caught up in his life I was forgetting to tend to my own. Marianne Williamson says most of our problems stem from forgetting who we are, and that rings so true to me now. Time to move onward. Time to live and let live.
How come no one ever warned me about how hard your twenties are?
Well first, let me say hi. I returned last week from a medicinal tour of America. Yeah! I had to see my doctors in Colorado and Miami–Which means I had to take part in modern American air travel which means I felt like crap a lot. I went to Colorado and felt absolutely terrible the whole time I was there. The funny thing is, despite feeling awful, I had a really great trip. I stayed with my grandma at her assisted living residence. But judging what my days were like and what her days were like, you’d guess I was the 83-year-old and she was 28. She lives a very active, involved, and social life. She wakes up by 5 and it seems like she doesn’t stop until she sits in her recliner chair at night. She can hardly keep her eyes open through the news. Me, I slept mostly. She brought my food at normal food hours and finally after being completely fatigued and short of breath for 3 days, my uncle Mike hooked me up to her oxygen tank she uses at night. So I looked like this most of the time.
The extra oxygen helped, but I was still out of sorts the whole time. Weak, Dizzy, Fatigued Yada Yada Yada. Luckily my grandma is one of the easiest people to be around. We talked a lot while I was there. I love hearing her stories. I love how happy she is at her age. I love that grandmas exist. I used to fear growing old, but watching her, I don’t anymore. In fact, I’m ready to stop being young and stupid.
I ask about a warning I never got because this Saturday I will turn 29. The last year of my twenties. It seems typical to freak out a little when the big three-oh approaches on the horizon. I sense that a bit. But at the same time, my twenties have been really hard. And nobody warned me! Though I don’t know who would, and it wouldn’t really make a difference would it. There’s been tragedy and heartache and some things I didn’t think I’d find my way out of. But, alas, I survived. I laugh because the more people I ask about their twenties , the more I hear people say that those were some of their toughest years. In fact most people said their 30′s were great and my grandma insists your 40’s are the best. Hers were anyway. I don’t know what makes them so, tortured, your twenties. Mine have felt mostly uphill. You know how babies go through the “terrible twos”? Well maybe your twenties are the adult version of that. I think it’s an odd time. You’re no longer an adolescent at all, but the college experience isn’t quite a real-world experience. I went to a University of 30,000 people, but still, it felt like a bubble. After leaving, it felt a little, anti-climatic? It’s like you’ve got all these credentials to prove that you’re an adult now, and the world expects that from you. But there’s still so much to figure out. Then again, I guess everyone is still trying to figure it out. The most important thing is to figure yourself out. I guess by your 30’s you’ve got a pretty good grasp on who you are, and that makes things easier in general. Have you ever hung out with someone who is unsure of themselves, who needs approval for everything? It’s exhausting, and it stems from not having a good hold of themselves. Sadly, we’ve probably all been there. I have to say that not really having my own home or my own money sort of stripped down my identity. I had to start over in a way. It was humbling but it also helped me get to know myself better. When you lose all these external things, it forces you to go within.
Then again, I can’t deny that my twenties had some amazing parts to it. I fell in love for the first time. I lived in France. I published my first article. I traveled and I made incredible, life long friends. I wrote a blog that became bigger than me. It’s had its perks. But I must admit, a part of me is banking on it getting a little easier in my 30’s. Like I’ll really get to enjoy all the wonderful things I’ve gathered with me along the way. A girl can dream.
A few days ago, I found a journal that my dad kept. It feels like I found lost treasure. Of course it’s always extra special when you’re reading someones written words after they’re gone. I read it with such a sense of wonderment. I was only 12 when he died, so I wasn’t really able to experience who my dad was an adult. I feel sad to have missed out on it, but at the same time, reading this journal has helped me to know the man I wasn’t able to know as a kid. I admit I completely idolize my father. It’s easy to do–he was a wonderful person and anyone who knew him would tell you that. He was a lot of people’s best friend. I’ve only ever heard of the wonderful things he did and the amazing person he was. I remember him yelling only once, and that was at my sister for not eating the disgusting buckwheat pancakes he cooked for breakfast. That night he bought her yellow roses, apologizing for having gotten upset.
In other words, he was Mother Theresa. And I often wonder if I am living up to how good he was or how generous he was. Furthermore, I compare other people to who he was, setting a really high bar particularly for the men in my life. Which is for the most part, good. It’s fine to have high standards. But sometimes I wonder if the bar is set so high that no one could live up to it. I need to remember that my dad was still human. He got upset sometimes. He judged people sometimes. He even cursed at our dog Bacchus while throwing rocks and chasing him down the street in his suit and tie. He slipped up like we all do, and I need to remember that. Reading the journal has brought to light the very human nature of my dad that I sometimes forget was there. The best part was, in the journal he describes each of my siblings and me and what makes us each unique. There on the last page were his words about me. Reading them was such a gift. It felt like I was sent an early birthday present, from somewhere over there. :)
Anyway, I’ve become a little distracted. I try to write but I just feel more an urge to read. Which is OK so long as this doesn’t turn into a writing breakup. I need to stay focused. But it’s been gloomy and grey and rainy out–so it’s perfect read and nap weather. Know what I mean jellybean? Anyway, all this reading and napping jazz has me worn out. I’m off to dream world.