Tension of the Opposites

I often forget that my life is somewhat unconventional– That it requires further explanation to obvious meet-and-greet questions. It means funny looks, unintentionally critical questions, and sometimes blatant doubt written all across someones face. The reaction, I’ve grown somewhat used to. But I’ve also grown used to the terms by which I live, and I forget that I come with a large set of footnotes. I long for the day when I can complain about my jerk boss, and talk about an apartment with big windows where I live and my roommates are not my parents. They probably long for that day, too.

Living life with a chronic illness means a few things for me: It means being 32 and not working a real job. It means taking 25ish pills a day and still living under my parents wing. It means a lot of solitude and a lot of talking to the dog–probably more than humans. It means I typically smell like BenGay or peppermint oil, and wear an ice pack on my head almost always. These things have become *my normal. But I forget that they’re not and requires an often long, boring story that I’ve grown to cringe when I have to tell it. Retelling your story, your background, how you arrived at now over and over and over out loud, you start to feel a little phony.

I don’t know when it became such a frequent place to end up, but lately I always find myself hanging in the tension between two opposites, struggling to find the fragile balance in the middle. Feeling bined between two of anything is usually unsettling at best, but can often be torture. The two forces aren’t necessarily always polar opposites. Sometimes they’re merely dissimilar, but operate on the same plane. Think surrender and giving up. Gone unchecked, one can quietly ooze into the other, and suddenly you’re nowhere you thought you’d be. Sometimes they’re contradictory forces: maybe your heart wants something that the head doesn’t like. Other times it’s reconciling two truths at odds, choosing between two options and stuck in the messy mud of the middle. Since I consider myself pathologically plagued by indecisiveness, this tension has left me agonizing in the toothpaste aisle for way, way too long.

Currently, I find myself in the center of multiple conundrums, questions, opportunities, examinations.. Not all of them are quantifiable, and many of them seem to be ongoing. I lay in bed at night and the questions fly around the room like some kind of adult mobile made of cosmic questions and pitiful choices. My brain has been tangled with these questions lately:
*How do I surrender to my circumstances and accept my reality without giving up on trying to make things better?

*How do I talk about being sick without getting caught up in my story?

*How do I write bearing the reader in mind without compromising authenticity?

*How do I maintain a sense of autonomy and identity knowing full well I am reliant on the help of others.

*How do I engage in advocacy that is proactive and realistic without losing myself and my worth in every day outcomes?

How do I satisfy this sweet craving without overdosing on gummy vitamins?

Carl Jung calls this “The Tension Between the Opposites.”

He taught that if you can withstand the tension between two opposites, if you can hold it for longer than what is typically comfortable, often possibilities and solutions will arise you wouldn’t have considered before. It can be an enlightening experience, and also very painful. The waiting is tough. But if you can sustain that tension, you’ll usually encounter what he referred to as ‘The Transcendent Third’. This new ‘third’ can involve both or neither of the two pieces you’re between, but in the wait, you can reach deeper into consciousness, and often that’s where the wisest answers are. “There will be two opposite approaches for solving it.Neither solution will be correct, but must undergo the tension that will result in a third approach.”

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“There will be two opposite approaches to solving a problem. Neither will be correct, but must undergo the tension that will result in a third approach.”

The world is so fast now. We rarely take the time to be still, to listen even in silence. If you’d like to experience the discovery of the Transcendent Third, you have to answer this question the Lao Tzu posed on the matter: Do you have the patience to wait until your mud settles? I’d say most of us don’t. Or we do but fail to realize it, living among a pace that’s fast and growing ever faster.
Lately I’ve given a lot of thought to the concept of surrender; something I continue to learn and accept every day it seems.  Among everything that being sick has taught me, surrender seems to stand out the most. Difficult beyond words, but once allowed in, it felt like I’d been given a glimpse of the divine. It can be a beautiful thing, but I didn’t learn it easily, at all, nor did I learn it all at once.

For years before 2011, my body spoke to me in a language called pain. Fatigue. It said slow down, stop, you’re not getting any better. And for years I downplayed, dismissed, and sometimes outright denied to myself that there was a real problem. As things were falling apart inside, I strived to hang on to all the attachments that the illness slowly started to take.  I thought as long as I could keep my job, it lessened somehow the reality of having a disease. It diminished it to an anecdote. I had it, it didn’t have me. As such, surrender came in pieces. Determined as I was, I couldn’t bare the tension of working, being sick and trying to get better. I was basically failing at all three. Something had to give. I will never forget that conversation in Andrews office, me holding back the tears as best as I could, saying I didn’t want to go. I had done my best, but my body just couldn’t take it anymore. Neither of us wanted me to worsen. We hugged and said that thing people say even when they know it’s not true. “I’ll see you again soon! Don’t worry.” But he did look worried, something in his eyes. I punched my time card for the last time–yes the 100-year-old gallery still used time cards. On that drive home I felt more lost and afraid than I’d ever had.

That was the end and the beginning. The next two years would the hardest–the most brutal on every level. I resisted. Lied to myself. Conceived of ways I could return to the path I was on before getting sick. It felt like someone had sat on the remote control of my life and accidentally pressed the pause button. There was an incessant feeling that wherever I was, there was somewhere else that I should be. Not this. Not here. I was sick when I should be well. In California when I should be home. At home on a weekday when I should be at work. I never had an inkling that Yep, this is right where I’m supposed to be. I thought if only I could survive this “wrinkle in time” I could resume the life I’d had before. Just like that. As if time moved in any direction but forward.

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Bye Old Life

I’ve had six years to adapt to the life I would feel proud to call my own again, but it certainly wasn’t  the one designed by my hand. I think the final straw that led to surrender was simply a matter of being too tired to fight. Somewhere after year 2, I let go of the last of my life plans–fed them into a shredder and watched as little paper ribbons emerged. Surrender. One part complete fear, one part total release. In hindsight it’s clear that the fear was mostly ego-driven. If I wasn’t designing my own outcomes, who or what was? And by the way, who could know the path I should take better than me? (Laughable now)  But the release had one up on the fear. It meant making room for the life that was waiting for me to finally begin. In fact I was the hindrance. I was the one sitting on the remote.

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My Life: Mid Rise Skinnies

After six years in the game, my life doesn’t feel foreign or as though it should be another way. It feels more like a perfectly worn-in pair of jeans. The ones where the denim is at that awesome level of soft and is tight and skinny in all the right places. I think jeans are one of the most personable clothing items. Have you ever tried someone else’s jeans on before? It feels like trying on clown pants. In the beginning, that’s what being home on a Tuesday at 2 pm felt like. Now that’s just business as usual.

I now struggle with the idea that if I surrender too much, if the circumstances of my life simply feel normal, I’ll become complacent. I’ll forget that it shouldn’t be this way. I’m not supposed to be sick all the time and spend vacations half conscious on the couch. But it’s become the norm. I don’t want to become so desensitized that a bookshelf filled entirely of my prescription bottles doesn’t shock me at all. And I don’t want to lose the fire in me to change the things we need to change, as a community that fought long and hard before I ever came around. I want to embrace and be happy where I am, but I want to be proactive. And so I’m trying to find the balance between enjoying the present while also remembering that there’s an injustice at play here, something that needs fixing.

I could easily be the one too sick to fight, but I’d have no doubt the warriors in the community would continue to work until it’s done. The baton might change hands but the balance remains. And just because I’ve tapped into joy and surrender and gratitude where I am, doesn’t change the fact that I am part of a community, one that has fought for this cause for decades. I owe it to them to do what I can. I am constantly seeking a way to advocate for what I know is right, but remain distant enough that my ego doesn’t get drawn in to the wrong efforts. It happens all too easily.

A very strange thing that might be hard to believe– I don’t actually like talking about being sick. And I feel that I’m kind of terrible at the whole advocacy thing. Luckily online my awkwardness doesn’t shine through as much, but it’s still a struggle for me to solicit people to help, even though I believe 101% in this cause and am certain I’ll continue petitioning until the deed is done. But how can that be?

How can it be true that I don’t like talking about being sick and yet I have an entire blog devoted to very subject: “Life through the sick lens”? I’ve toyed a lot with these opposing truths and tried to understand how I could want both. And I think the answer is somewhere near this: By speaking honestly about the experience, particularly the chronic illness experience which I found to be largely misunderstood, and by foregoing the typical polite response or social etiquette and supplementing instead with what is true, I open up a space for us to move closer together instead of further apart. By writing about a topic that can be very isolating, people are given a chance to understand, instead of blindsiding them with “Well I live in mismatched pjs and I haven’t showered for a week because I’m too weak to shampoo my own hair and oh, you’ll never understand!” (Runs out of coffee shop. Trips. Continues running.)

Contrary to what I hear people say all the time, the world is actually full of good people, and most of them aren’t trying to hurt you. 99% of the ones I know are exceptional, and they are sympathetic and helpful about my situation when given the chance to be. But you have to be willing to reach out, which means you have to expose a need, and sometimes that’s the hardest part of all. I only know if I keep too tight a lid on my own unusual experience, hellbent that the world will just never get it, I will most likely be right, but it won’t be the worlds fault.

So, life continues, seeking out the peace in the middle. Waiting patiently for the right answer to arise in so many scenarios. And holding the tension between opposites long enough to tap into something deeper and wiser than I ever could be. It’s not the easiest thing, but it sure beats pulling my hair out between Crest Multi Care and Colgate Total at midnight in Walgreens. The point is to be still, patient, and wait for the mud to settle.

Health, Happiness, Settling Mud

The Chronic Fatigue Syndrome Song. Hot Off the Street.

Since I have a large amount of free time, I started writing a song about ME/CFS. I called it “The Myalgic Encephalomyelitis But For Our Purposes the Chronic Fatigue Syndrome Song.” Slides right off the tongue right? I told myself if we hit 40,000 signatures, I’d post the song and lighten things up a bit. There’s not much humor in chronic disease talk or advocacy, but I think we could all use some. So, 40,000 signatures later..here we are. A few things.

But first, sign the danged petition. Did you sign it? Just sign it. Did you? Click on the link and type your name. Did you do that? OK, well then do it now. I’ll wait. Sign it. You’ve signed it now? Great! I don’t have to keep saying it? I’ll stop. Cool. OK but so just to be clear you signed it right?  Thank you. I love you. https://www.change.org/p/increase-research-funding-for-me-cfs

1. I don’t claim to know how to play guitar. I learned six chords on it a few years ago and can fumble through a few songs, most of them by Taylor Swift as her songs consist of the same four chords. I love it. Anyway this is why my song is only two chords. Sorry.

2. Monty makes some background noise now and then that I was too tired to edit out. He was chewing on some toy the whole time I played. Then in the middle of verse 3 decides he wants to play tug of war. He’s never had great timing, and we’re working on that.

3. This is more of a philosophical thought in general that I had while writing the song–maybe all diseases should come with their own jingle? That way tragic news might be a tad easier to take. Like “hey hey hey, you’ve got cancer in you brain!” Or “Looks like you’ve got a case of GOUT, hey! But we can fix that, no DOUBT, hey!” More creative lyrically, but you get the idea.

4. I’m sure someone will comment that I don’t look sick. Understandable, and truthfully I have improved from how I was last November when it was challenging just to walk. But looks are deceiving and they call this disease invisible for a reason. All those pill bottles behind me are my own, that I’ve been haphazardly saving for the last 9 months or so. I’m wearing my pajamas but threw on a bra and some lipstick– you know, to be professional.

5. This song is for anyone who is sick, including those with chronic illness, and especially ME/CFS. I hope it makes you laugh or smile, because I know that being sick is a weight you carry around all the time, and it’s heavy and intense to deal with daily. Sometimes you just have to step back and laugh. So let’s have some fun.

But make no mistake, this took work and has a specific goal. Rhyming with adrenal insufficiency is no easy task!  I crashed week after week just trying to record it (I know, and it’s still poor quality) but I wanted it to be decent enough to make the rounds, maybe inform some people, make others laugh, and perhaps land on the desk of someone who can help us. You never know if you never try. I’m ready to fight for this as long as it takes, sick or well. So until we get the adequate funding, prepare for more creative/ridiculous forms of advocacy, and please help spread the word. Yall have been a huge help, keep it goin! Thanks again, and enjoy :)

Health, Happiness, and Disease Jingles

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

Part 1: No Big Deal

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

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

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

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

***

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

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

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

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

Goodbye It’s OK. Hellooooo cruel world!

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

We havin’ fun yet? :)

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

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

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

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

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

Health, Happiness, No Big Deal

Airports.

I am somewhere between supine and upright on my couch where I have taken residence the entire week. My postcards read Greetings From the Couch! Most the movement taking place is in a continual rearrangement of pillows, positions and blankets in a futile effort to achieve positional comfort one way or another. No success yet. There must be an ergonomic texting/reading chair somewhere out there.

Outside it thunders, as it has every afternoon this week. It’s hinting at another storm, but has yet to produce rain. Monty is in mental disarray, gyrating off and on in these vibrational fits, all due to thunder. I’m still surprised he exhibits such outward fear this way, mostly due to the frequency of thunder in Louisiana–like fearing snow in Colorado. It’s instinct, apparently, that guides him to squeeze his awkward, girthy body into the narrowest nooks of his own making around the house, which right now is between the sofa and coffee table beneath my outstretched legs. When I go to the bathroom, he follows close behind and then wedges himself between the toilet and the wall. Another round of gyrating. Every time it cracks suddenly or it grumbles in that deep rocky tenor, he stares up at me suspiciously with visceral worry in the whites of his eyes. It’s like he’s saying “See, I told you” as though the sound of thunder was proof that it were dangerous. Maybe it is and we’re in harm ways;  I’m just too dense to know it.

My petting and reassuring him with extremely human explanations, my instinct, apparently, does nothing to quell his fear. A boyfriend once told me, as is distinctly male instinct, that it’s my own cushioning and coddling him in my high-pitched, soothing voice that makes him nervous because it communicates that there’s something to be nervous about. If you only acted normal, so would he. But I am beyond certain now that this is an incorrect hypothesis, not just because of the many instances of thunder and attached panic I’ve witnessed, but because once, a year or so ago, I came home from the grocery store in the middle of an aggressively loud storm. Unable to find Monty, I finally discovered him not only in the bathroom, but in the bathtub, quivering. This is still both one of the saddest and funniest discoveries I think I’ve ever made. Being righteous as I am I noted right away that this fear of his is no the result of my coddling, but from some primive instinct to get the hell under something, squeeze into a tiny space and quiver till it’s over. Interestingly enough, they say the bathtub is the safest spot to seek during a tornado etc. That’s what my mom says anyway, to which her husband cackles As if there’s a safe place to go during a tornado. 

I’m supposed to be on a 4:00 plane to Miami tomorrow. I’m visiting my Brother & Company for a week and then attending my best friends Miami Bachelorette Party at the week’s end through labor day, braving ourselves amid the Zika hysteria. I’m in no shape physically to travel right now, but I’m hoping and praying for some kind of divine help. For more than a week, I’ve been, what’s the phrase…Out of Service. Technical difficulties. Shit For Brains. The usual Crash buffet. I’ve rested pretty continuously, changing couch to chair one day, trying a different room the next, mixing it up as much as is possible right now. Among the physical shiftiness  I find myself really grateful that I have the time and space to actually rest. I always recall my last few months of working full-time, when I felt this way daily. The added angst of knowing that on top of being that sick I had to show up somewhere and be a functioning human being was enough for a nervous breakdown. Those were incredibly tough days, but I’m glad I had them. It swells my gratitude now that I don’t have to push through the pain, fake a smile, tell people I’m fine when I’m half certain I’m about to croak. It’s a gift that I don’t have to live like that now, and I try to stay aware of it. I know that traveling to Miami and sleeping somewhere that isn’t home is going to take a lot out of me, annoyingly, because I always prided myself on being a low-maintenance traveler. I’m still able to sleep almost anywhere and don’t require a lot of amenities, except water for pills and sometimes an emergency room. But I don’t think I qualify as low-mainenance anymore. And there’s a price to pay in leaving home now, and that’s just part of the deal. “Vacations” are not relaxing things really. They are usually a lot of fun, but they are always costly. It’s one of many things that, due to physical restraint, has become depressingly large– mundane things are no longer right-sized.  Laundry. Packing. Putting bags into smaller bags. Remembering. Prescription refills. Pharmacy lines. Doctor authorizations. Insurance Authorization. Pharmacy on-hold music. Monty’s sad face when I get out the suitcase. Lifting and carrying and dragging a portable box of crap on wheels around.The normal stuff everyone endures. When you think of all the steps you’ve gone through by the time you’re sitting on an airplane seat, it’s a lot! It’s the same except for the burden it will bear later. An ongoing debt you have to pay, for a bunch of crap you don’t even want! Hah. Am I done complaining yet? Maybe.

I’m thinking of one of the largest culprits of exertional consumption: Airports. Like Vegas, it’s a surprising amount of walking. Standing. Waiting. Discerning boarding announcments. Taking off and putting on shoes and jackets and giving the laptop its own bin and PLEASE MOVE OUT OF THE WAY MA’AM. It’s the meanest display of manners one will ever encounter. A harsh environment in many respects, the airport is like entering this fluorescently lit void where nothing is permanent and you’ll live a little while–but only as a stop on your way somewhere else. Not so different from the no-name town interstate exit you take on a road-trip at 3 am, strictly to use the bathroom and gas the car. It’s a blurred cross-section of time zones cultures and classes that feels like one wavelength just outside reality. The normal rules don’t apply. What time is it? It could be so many different o’clocks at once!

It’s a funny place. It does things to perspective, to experience, even physiologically. You walk but somehow it feels like you’re running. Down a transient track you go, walkrunning to your gate, (your  3 am exit) as bits of conversation and commerce and commotion fly past you in quick succession, one second glances in the eyes of strangers, some of them feeling oddly familiar. Snapshots of children having tantrums among bulky luggage in a news store inline. So many incremental, rapid snapshots of all the others in the world. You forget they’re out there. They flash by at such a rapid pace, and just as quickly they’re gone. I always feel incredibly slow, unable to keep up with a pace that is either insanely hurried or intolerably slow. I feel standstill among it, even when I’m walk-running. There’s a certain nervousness I detect; most people aren’t really reading their books. I know because I’m creepy and I watch while they wait. They’re always looking up and around, just making a general visual sweep, assuring their psyches that no one in the vicinity has lost their mind yet or look like they’re going to. The people watching went down a few notches with the introduction of cell phones. Now people are actually entrenched in what they’re doing–looking at Facebook or Twitter or any of it on their phones, and probably someone could lose their shit really loudly and they’d hardly notice at all. Anyway, inevitably, there’s the well dressed business man running full speed with his expensive roller suitcase in toe and his jacket flapping behind him. Excuse me!! He yells with importance and people seem to respond. Yes move please thank you! Some people give him a dirty look, but they’ve forgotten solidarity! We have all been that man running like an idiot to our gate. I must say the image always makes me smile. It’s the quintessential reminder that yes, you’ve arrived to the airport. Buy something trashy and take a seat. Read, don’t read, you’ll enjoy yourself regardless because there’s something pervertedly entertaining about watching people dressed nicely and running at high speeds. I know I know, solidarity. But it’s just too easy. Thousands of people you’ll never see again.

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Hi your flight has been delayed six days
A mighty few are novelty travelers, for whom the airport is filled with opportunity and new adventure, and the unique sights and sounds are an exciting reminder of going somewhere new! But sadly many more represent the disgruntled traveler, the jaded one, the one with 3 million frequent flyer miles that he’ll never use–for a vacation anyway. Like the teacher who has been teaching far too long, he’s too familiar with the height of inefficiency he’s about to face, the hoards of human stupidity he’ll have to wait on and wade through just so he can board a vessel where all the pieces and parts of utility and supposed comfort are screaming “I’M TOO SMALL!” Inevitably he’ll be seated by a yelling toddler being spoken to as though he were 40, all so he can experience the miracle of flying at 40,000 feet, a height repeated by the captain 2 too many times along with others “uhhhs” and stutters and unnecessary bits of information. Then the final descent, a wobbly landing to applauding passengers for God knows why, in Cincinnati freaking Ohio.

Personally, I love flying.

The sky has finally opened its mouth to a downpour. Monty has calmed, but he sees the open suitcase in the corner and we’re both a little weary.

Health, Happiness, Seats Forward and Tray Tables up

 

Authors note: This was written ten days ago. Not that you care. 

Brain Not Work So Good

I feel this modern artwork both describes what it feels like in my brain recently and also represents the clustershit that my writing has been. At least spaghetti brain can look pretty. The writing is a mess.

Jellyfish-in-a-Trifle-WEB

I say the as if it’s someone else’s. My writing. Me. I’m doing that thing where I start out simple, on course, paving a promising path toward something that makes me think but that I can also wrap up and understand in the end. There’s never a lull for words or ideas. They pour out–I have a lot of time to think them up. When I’m not writing them in my notebook or typing them on my phone I’m usually just thinking of nice sentences in my head. I’m mind-writing. Just watching sentences fall into place mentally, perfectly, and I actually feel relief when these sentences are formed. The kind of relief you feel when you  get in your car the first time after you’ve cleaned it, and it was dirty for a long time before. It happened on the way home from the pharmacy yesterday. Sadly, I remember the relief more than the sentences or ideas. I tell myself I’ll remember this later, but I hardly ever do. On rare and momentous occasions, if I just sit down and start to work it will pop out like a wine cork. Ah! There it is. But I hesitate to think how much has gone un written because I wasn’t near a pen or a computer, or that I actually was but just didn’t put the effort into getting it down. Owell. That’s kind of a self-important thought. And, I guess we have to assume the work we never made, lost now somewhere between sleep and consciousness, was probably crap.

The words pour out not because I’m FULL of words and ideas, but because I have no requirements. Few expectations, no deadlines. No assigned topics. And no financial incentive. It’s just a hobby that I treat like a job.  Except that I’d be fired by now and there’s no 401K. Maybe I have too much freedom, so the meandering and circling is just too easy to do. I struggle because it starts off clean, on track with a promising topic and flows naturally in one direction. Then somehow it turns into the literary version of a flying cockroach, darting around clumsily in different directions and you don’t know where it’s gonna land next and you know when it gets killed it will make a crunchy sound. Sorry scratch the last part. I don’t know what it is. I like the words and concepts emerging,they’re just not always in order. Or they’re crap.

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Me Writing Crap

I know this will sound incredulous to some, but when I’m in a crash my brain starts to stutter and cloud way more than usual. In the past I’ve mostly been able to avoid the cognitive effects at least when it came to my writing. But I’ve been working on this post since Thursday. I know I know, easy to blame shortcomings on the illness. But the only reason I feel it is effecting me this time is because that reading stutter returned on Friday too, having to reread sentences over and over, and then just not remembering an entire page and having to start over. Luckily I rested mostly on the couch while Monty quivered near me at the sound of America’s birth, and two friends brought me food! It was nice. Yesterday I was more clear headed reading wise, and able to finish my latest read, The Invention of Wings, which was really great. There’s a lot of good little nuggets in there. And I was surprised and inspired to learn in the authors note, the two main characters were real–born into money and a large plantation in South Carolina around 1830. They would eventually became devout abolitionists and publicly denounce slavery and fight for its end, sharing the cruelty they’d witnessed with their families own slaves publicly, and the world didn’t quite know what to do with them. I enjoy characters like that. It was enthralling and I recommend it.  I need a book club.I just feel like I’d never show up after the first meeting. Anyway my mom says she’ll read it so that’s cool.

Where were we? My writing going in circles, right. I wrote for three hours on Thursday and three hours on Friday and collapsed like a whale on to my couch after both “sessions” and sortof spent the weekend that way. Yesterday when I revisited the words,  I realized I’d written over 4,000 of them, and some made sense and others were in the wrong places and would just require a re-organization of things. But I don’t think my brain can handle it right now. I’m leaning towards spaghetti brain. Noooo. Here, I’ll find another pretty picture.

parsonspaintingsmall
Nice, no? That Jaime Rovenstein is really good at creating non-crap. Check out more on her website.

Also, I think this is why agents exist. Why good writers have agents. Proofreading! There’s a word I haven’t heard since college. Maybe that’s what this blog is, one long proof-reading session and one day it will turn into something else that actually pays dollars and cents and I can get an agent or whatever. Or maybe I just need a small person to stand beside me and ring a bell when I’ve written and rambled more than 10 minutes. Now I’m doing that thing where I write about writing. So dumb. I should just write and post. I’m too cautious. I just want it right and I know when it’s not. DING, the bell rings.

I’m going to condense and summarize the absurd amount of words resting on a white page behind this screen. Because I Believe in Brevity!! That sounds like something..a campaign slogan? Specificity is important too. I accomplished neither, so I’m just going to sum it all up. OK. It starts with this sentence.

“I think the time for a typewriter has come.”

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How fun is this dudes art? Check him out.

 

Simple enough right? Then it drops off the edge. I find myself wondering if technology is aiding or prohibiting these things–writing, art, creativity and whatnot. Which somehow brings up the woes of scanning Facebook in the middle of the afternoon, and what those photos are actually capturing. I ask what it is about these photos that leaves me and others sad and yearning as we keep scrolling. (Authenticity, I think is the answer) Then I compare Facebook photos with those JC Penny photos a lot of us took in the 90’s, (dudes, the hair)  and explore physical momentos verses digital ones. Is my generation more or less authentic than the last one? Next I defend Millenials after continual insistence and wagging of the finger I encounter that says Millenials are all lazy, don’t know the value of hard work, we were given too much, have no accountability, and don’t appreciate what we have. This article is a great example which went viral a while ago and a few people posted it on Facebook like “Oh my God, so true.” Uhh, agree to disagree I guess. I agree that your point is false. Then, I deliver a personal conviction that it may not look like it, but I think as humans we actually are progressing, despite a lot of people my parents age saying the world is going to hell in a handbasket. I wonder if their parents said that too. And their parents parents. The fact is we’re still living among the good and evil that has always existed, which leads me to an exploration of that provocatively awesome question David Foster Wallace asked, which is, If we have all the things our parents never had and more, why aren’t we happy?

Let that simmer.

Then I wonder if is this a theme that has repeated itself throughout every generation. Always thinking the next one would surely have it easier. Each one working hard so the  generations after them might have what they never had, and do things they never did, and avoid the hardships that they had to endure. Maybe it’s hard to see that the world is still what it is, and human beings are still who they are, imperfect, after you’ve worked so hard to make it better. Especially if you worked your whole life to do it.

Maybe our notion of happy is off. Or maybe it’s not about happiness. It’s moving forward.

Then the neighbors fireworks got really loud and Monty was quivering below the desk and the writing turned weirdly patriotic. Fast forward from notions of happy and the formulas that work or don’t work, and also the American Dream. Achieving what we’ve historically called the American Dream does not mean achieving happiness. It means achievement. The happiness part is on us. The Dream is living in a country where we’re free to pursue that happiness pretty much any way we want. And I know it’s cheesy, but when you compare this country and our opportunities and freedoms compared to so many other places, we are danged lucky to be born into this one, with autonomy, opportunity and Chronic Fatigue Syndrome! Kidding. I think I have a very good life. I think a lot of people have very good lives and don’t even see it. Anyway this is the part of America that I’ll always be grateful for and humbled by, knowing the generations before me and the blood and sweat and tears that went into creating it, and I guess our job is to make their work and sacrifices worth it. I’m trying! I can’t say whether we’re a happier generation, I don’t know. But I think maybe the more important question is, Are we a more conscious generation? And to that I say, yes.

Now lets go blow stuff up.

Health, Happiness, Happy 6th of July

What Makes An Illness Invisible? I do I do!

There is a certain hesitation that comes with being sick with a disease they refer to as “invisible.” Who are they? And why do they call it invisible? The they is simple; it’s not so much a reference as it is a perspective. People and doctors don’t tell us our ailment is invisible. They simply don’t see it. And when you’re sick, especially for a long period of time, you become keenly intuitive about who sees it and  who doesn’t. With someone who does, a certain ease settles in, as though you could wink at one another and understand it completely, even if you’d met minutes ago. Your guard goes down. Shoulders relax. That apologetic tone leaves from your voice. Those who don’t see it, or don’t fully “accept” it, and it makes sense that some wouldn’t, by the way, given this disease is not visible and is rife with evidence that it’s psychiatric or something else, we can sense that just as quickly. There’s an immediate undertone of tension, it makes my cheeks hurt while talking, the way eating a lemon does. I can feel my defenses go up. No matter how strong I’ve become at sloughing it off, doubt or judgment, it still stings. ‘Rubs salt on the wound’ as they say.  It makes me want to explain everything, from the start, “No wait, if you just listen to how it all went down, if you knew how I was before this, what it’s like most days…” but it’s useless. For them but more importantly for me. For us. I have to cease needing the validation from others and just trust my inner self. ‘Choose your battles wisely’ they say. Turns out they say a lot don’t they.

I think about The Truth, the eternal one that we’ve gotten wrong so many times, absolutely certain with documentation and everything that we were right and that was that. And yet the world remained round and the sun chilled with black sunnies on in the middle of the earth revolving like dude, yall are way off. The truth has never required us to imagesbelieve in it in order for it to remain, and that often brings me comfort. It’s my ego that seeks the validation. Still, I’d call it’s pretty reasonable that you’d rather not be seen as crazy or a malingering pansy particularly in a vulnerable time of your life when you’re sick and need support. But this is another “invisibility factor” of the illness. And it matters because not being believed is a psychological kick in the brain. Or face. And that’s just it. We don’t look the part on the outside. People can’t see pain. Or a headache. Full body weakness. Mental spaghetti. Vertigo. The hit-by-the-truck feeling. Yada yada yada. All there is for “outsiders” is our word, and some take us up on it, others don’t. I’ve been surprised observing the fluctuation of strength in my own word, depending on who it’s being exchanged with. I’ve been struck that a doubter could make me doubt myself.

Besides not seeing it “on” us, most doctors aren’t going to see it “in” us either. Invisibility factor number 2. We’ll give gallons of blood and urine samples and get x-rays and MRI’s and whatever other procedures they can think of that insurance doesn’t really wanna pay for :). They may find little things, but for the most part it will all come back normal. Yaaay! Normal. But let me intervene quickly that the American medical term for “normal” is a bit flawed if you read how the numbers are configured, but that’s another issue. But the point is: invisible. Again. Even in our blood and our brains and our tickers! Sometimes they find little things off here and there, but in no way would consider this a part of ME/CFS, they’re all isolated symptoms. And so there you are either in an ER bed or sitting on the crinkly white paper of a doctors’ office being told you’re in fine health and that this is good news. But it’s also important to point out here, often these tests are ‘normal’ because most doctors aren’t trained on what to look for in regards to this illness. This isn’t taught in most med schools. There’s no standard diagnostic test yet which make makes things harder. Invisibility Factor Number 3: no research. The things a specialist test for are far more in-depth (and expensive) than a regular doctors work up: like NK cells, cytokines, CMV, HHV6 and many more. Right now, due to the lack of these specialists, it’s basically like having cancer and visiting the foot doctor. Welp, everything looks great to me! 

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I mean this is just a great picture

Still, a large man in a white coat, his degrees framed behind him, scanning through your labs and telling you you’re fine, to get outside, drink more water and eat more protein, (my experience) well, it encourages doubt. Even though I knew otherwise. I know what I feel inside, and it does not align with what I’m being told. And yet, when someone challenges your thinking, someone bigger and smarter and who you’re supposed to trust, you can’t help but consider that they might be right–thus, you might be crazy. Woohoo! But it’s important to recognize the reality of the situation right now, and also that this it’s changing. More doctors are being educated about the illness and presumably in the next ten years, you won’t have to travel to other states in order to find one who knows more than you about it. Not to mention, doctors make mistakes. They are humans after all, and they don’t know it all. So often after a bad experience with a doctor, or anyone for that matter, I have to remember, (or my mom has to remind me) that this is vastly misunderstood right now, and people aren’t acting out of malice but from misunderstanding. That lack of understanding is just beginning to change. Slowly. And you know what? I think the petition may end up helping with that. That’s my hope, anyway.

A friend of my mine asked a while back “Have you ever considered that they might be right, that this might be more of a psychological thing, and you could actually be cured by pacing your exercise and receiving cognitive behavioral therapy? Or do you feel totally positive that it’s a physical disease?” This is all under the umbrella that I fully accept and believe that mind and body are connected and the health of the mind is intrinsically tied to the health of the body. Still, this topic is not being brought up so much in the same way with other diseases. The intention is different. I admit didn’t know exactly how to answer. I felt like “techinically” the right answer was, yes, they might be right and this might have a major psychological component that could be an intrinsic part of it and a part of curing it. I should have to consider that these psychiatrists might be right. But I couldn’t do it. Even though I have looked at myself in the mirror and asked that question, considered this  many times Could I be crazy? Could this all be a front, could I be a mildly insane hypochondriac? Or could this all be ignited by something psychological from my childhood that I never worked out?” These doubts have run through my mind more than a few times. But in that moment, despite by own past consideration of other possibilities, I truly felt like a monkey being asked, Are you open to the idea that the others might be right, and you might be a giraffe? I answered in solid faith even though I felt myself nervous to do it. “No, I’m sure that’s not the answer to this.” I was in that moment, a total  monkey.

I am an indecisive, uncertain person by nature. It takes me twenty minutes to pick out what to wear, including pajamas. (Ahem, that’s what I wear)  I doubt and question myself a lot. I feel like I’m still learning how to be who I am. But, I’ve had twenty years of this invisible illness and gone through the ringer of its effects, felt deeply the losses it has caused. I’ve watched what it does to my mom, who I trust. I’ve read the stories and comments of thousands of others with experiences uncannily similar to mine. High functioning, happy people, (SANE PEOPLE) who had a rug swiped out from under them and were never the same. I think of the extremely current research and that of the last five years. I think of Lauren Hillenbrand. Of Whitney Dafoe. Of my doctor, Nancy Klimas. And I just can’t imagine at this point, that all of this comes back to some psychological trauma that just needs to be worked out with behavioral therapy and physical conditioning. This is what is being touted as a legit cure in many countries, including ours, but particularly England, Australia and a lot of Europe. This illness can be triggered by a psychologically traumatic event, but this only points to another pathway in which, whatever this disease is categorically, (presumably a virus that takes advantage of a vulnerable immune system) that it has varying opportunities in which to intervene. This doesn’t make it a mental illness. And even if it were, it still doesn’t justify the way it’s been treated up to now.

I wish I could say that I’ve never doubted myself or the disease again. But I have moments where I do question myself. But I think that’s normal. Enough people question your your point of view, inevitably you’ll question it yourself. I know that there are many more invisible diseases besides M.E., and that a lot of people have felt isolated by the facade it produces. I hope if they’re reading they know they’re not alone, and they’re not crazy. They’re just sick, with whatever: ME/CFS, Depression, Fibromyalgia, Arthritis, Lupus. I have moments where I forget what it’s capable of and crash myself for days. My mom always tells me, don’t play ball with this disease, it will always win. That’s typically how I’m reminded of reality when I doubt it– the state of my own body. It’s hard to doubt your own illness when you’re struggling to walk. And if that somehow isn’t enough, I close my eyes and go back to my inner, inner self, where the truth lives in stillness, without interruption. Where the world is flat. Where the earth orbits the sun. Where an invisible disease simply hasn’t found the cause or cure, but one day soon will be seen, will be believed, but most importantly, will be cured.

Health, Happiness, (In)Visible

P.S. The petition is still live and running! The new goal is to get to 50,000 signatures before I formally present it to Collins and Burwell which should be in July. I promise this is the last high goal. We stop at 50. And if we get there, I will sing a song on camera that I wrote called “Chronic Fatigue Syndrome and Other Associated Conditions” and post it to the blog. It’s two chords, and worth seeing. Mostly to watch me make a completely humiliating knucklehead out of myself. So sign!   Good night.

Me Vs. Myself In My Own Campaign

I have to admit something that feels a little shameful, and since this blog seems to inspire little dignity in me and zero reverence I’ll go ahead and do it.

Lately I’ve felt a schism crack inside of me. I don’t know what it is, a Campaigner and a Skeptic. I’ve been advocating these last two months since I began the petition asking the NIH for an increase in funding for M.E. I can’t tell you how tired I am of just writing that sentence, and probably if you’ve kept up reading this, your eyes just glazed over. And then I feel bad about feeling exhausted by it. I believe deeply in the campaign and I want more than anything for it to do what it set out to, which is actually to change things in a quantifiable way. This whole thing has been fronted by social media, so I’ve spent hours posting it on every forum, every ME/CFS Facebook page, (of which it turns out there are like 4,000), tweeting to the same groups and other organizations I’d only just discovered,  and any and everyone involved in the CFS community, including celebrities who I’d read had the disease. This includes Sinead O’Connor and Olympic Soccer Athlete Michele Akers, but I didn’t hear back from either. I thought about singing a version of “Nothing Compares” to Sinead but rewriting it with lyrics that explained the issue and pleaded for higher funding. But I never did it. I head Glen Beck has ME, but I’m just not going there. I just…I can’t.

I did actually write a song, a two chord song on the guitar, so far titled “Chronic Fatigue Syndrome” but we’ll get to that later. Similarly I’ve been sending emails to both friends and strangers, asking them to do something. But doing this day after day can start to feel..a little desperate. Sometimes I didn’t like myself. It feels like I’m asking all these people to do something for me, people I don’t even know. But I’ve had to constantly remind myself, when I start to feel like some kind of annoying car salesmen with poor boundaries, this isn’t really for me, but for something so much greater. It always has been. One look at the comments page of the petition and it’s so clear that we need help, and we’ve needed it for a long time. So if I’m gonna go for it, I need to go for it. STOP BEING A PANSY, in other words.

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Pansies are quite beautiful it’s a shame they’re synonymous with WIMP

Despite many people and organizations reading my story for the first time, I find myself rolling my eyes at my own account. And I think God, what’s wrong with me? Where’s my pride for this fight? I have to remind myself that this has been a 30 year injustice that started before me, and I am just trying to help fix it. And then I find myself even struggling with that word. Is this really an injustice? And I realize when I ask that, it’s coming from a failure of perspective. The insecurity considering my own experience with this illness, and my sense of normal, which is inside out and backwards. Even though being sick has been the hardest battle of my life, I still look around at things and think “But I’m OK.” Sick or not, I can find ways to make it all work. I have so many people and so much love behind me that I know I’ll be OK. But there are 2 obvious flaws in that thinking. To begin with, when I really break it down, I think

Mary, you’re living in your parents pool house. You aren’t able to work anymore. Sometimes weeks go by without leaving the house or seeing anyone even close to your age. You live in a town you have no connection to except for the pharmacy and three doctors. You hang out with your parents A LOT. Last week your own mother washed your hair for you in the bath because you were too weak to do it. And showers, let’s not even talk about showers. The point isn’t that my life not being normal is the problem, it’s that I’ve become so accustomed to what the illness has done with my version of normal. I forget, this is actually kind of a huge mess that I’m just living out as best I can, one day at a time. I don’t plan things, I can’t keep them. Somewhere, I sense a clock is ticking. It can’t last this way for long, right? And if it does, would I be OK with a life like that?

So is this an injustice? Yes. Read everything that’s happened with this illness pertaining to the CDC, HHS, and the NIH over the last thirty years, and it would be hard to call it anything else. Just because I’m surviving and ‘OK’ doesn’t say anything about the millions who aren’t.

And that brings up the second flaw in my perspective: I am not nearly as sick as so many others who have this disease. There is a scale to the illness in terms of intensity. A portion can function partially, but it’s hard to call those who are at the other end of the scale “sick.” Their bodies are shutting down. Confined to one room, unable to talk or tolerate sound, eating through a tube. Would we call that living? So many people have been sick for decades, their husbands or wives gone because life with this disease hugely impacts relationships. Some can’t understand it or even really believe it. One woman told me her husband divorced her because, he said, “I can’t watch you slowly die anymore.” People, especially husbands, hate feeling like there’s nothing to do for it, no way to help. And at this point, that’s basically where we are. You’re lucky to find a doctor who knows much about it. All of this reminds me; sure, you can make lemonade out of lemons, but there is a far deeper issue at play here, and it’s been slowly building into what is now a health crisis. It’s like the equivalent of the Velvet Revolution- a calm, quiet crisis. It’s gone on gently behind the scenes, behind the noise of other major news, of more important health issues, diseases with names that don’t make a person stop and hesitate whether it’s “real” or not. So I have to remind myself, this is beyond lemonade, and this fight reaches for things far beyond me. This is for the thousands of people who are far and away worse than me, who can’t fight for the change that has long been needed. “Sick” is such an understated way to describe them. “Slowly dying” is more accurate, just like the woman said.

So, I need to stop feeling apologetic for fighting for this change. Yeah, it’s probably annoying on Facebook News Feeds, but I’ve seen my share of weird engagement albums of couples in urban settings, and political rants and pictures of peoples lives that are awesome that make me feel incredibly small and boring. So, I guess it’s OK to annoy with a petition for a while. It doesn’t mean I have to become a full-time advocate, but I need to see this thing through to the end, and getting petition signatures is really only phase 1. I need to participate (at least virtually) in the protests this week, because it matters to me, and I don’t know why I feel like I should keep it a secret that it does. The real work might just be beginning–getting the big dogs on the phone, and in person, and making the case. I will say, I feel more far more confident reaching out to these people with 33,000 signatures behind the request. Printed out, that’s over 1,500 hundred pages of names. That’s impact! And that’s what I was looking for. So Thank You, all of you. A petition doesn’t work unless the people sign. The next phase will be interesting and could take a while. But, as always, I will keep you posted.

I see big change up ahead. Monty too.

Health, Happiness, Justice

“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.”            -The man, Barack