Me Write Now

So, it’s been… an interesting month. The viewing event of Unrest in California was really incredible. I have so much to write about all of it, but given that my brain has a time limit of functionality lately, I’ll just say quickly the most important part now: watch this movie. It’s a really, really well done documentary and surprised me in ways my mashed-potato brain can’t convey at the moment. But when my mind is more functional I’ll get further into it. But watch it–iTunes, Amazon, Google play. Find it, rent it, learn a lot– but also see some incredible stories. I strongly recommend it. It will not disappoint.

Here’s the trailer.

I think my brain is still in recovery mode. After the flight home, it wasn’t just a body crash but a brain crash.  For whatever reason, air travel has become increasingly overwhelming for me–mostly due to the noise. There is such a wide range of stimuli you’re constantly exposed to when you fly. Visibly, audibly, socially, physically. But for me it’s sound. I seem to have lost the “buffer” we were born with that smooths things out for us to hear, and the typical noises–converging gate announcements, people on their cell phones, the sound of the plane engine, the automatic flushing toilets, the sound of the captains “status update”–they all feel like an assault to my head. I know it these seems like small and petty things to bring up. And when I was well I never would’ve noticed or been bothered by things like that. But now they are actually painful. By the time I make it home…I’m wiped. I haven’t mentally really felt the same since we returned. I’ve been in an either hyper-sensitive mode of everything at once, or a hazy, sap-paced state where trying to complete a thought is as arduous as an old man trying to get out of a hammock.

The fact that I’m dealing with some major emotional whacks (a breakup, for one) has only made things go more haywire. In fact I think it was a lot of emotion mixed with regular cognitive overload that sort of took things over the edge. That and the insanely loud cacophony of those damn automatic toilets. It feels like my brain is going to shatter and shoot out of my ears when they flush. If I end up in hell, those flushing toilets will be the soundtrack. Just so we’re all clear.

When I think about my cranium I picture that delicate glass slipper being forced on the ugly step-sisters far-too-large foot. There just isn’t enough room in there for everything to find it’s place and get processed normally or in order.  It will suddenly enter an erratic state and my thoughts start flying from every direction dealing with any and every topic, related or not, and instigating every kind of emotion in a matter of seconds. It’s like a hail storm of mental calamities flying at high speeds up there, and I’m just trying not to be get hit. Orrr, it moves so slowly and stuttered I can hardly say my full name out loud without pausing to remember like, my middle name. Soo, cognitively…still in recovery. Please stand by.

Trying to avoid your own fast-paced thoughts and emotions, or extremely slow ones, isn’t really possible. Like Tolle says, you don’t evade them, you learn to watch them, and remember you’re the one observing them, but you aren’t the thoughts themselves. He’s right, but dang, it ain’t easy. Peasy. In fact it’s crazy hard. But, we try.

Yesterday, I realized I had spent 2 hours writing and rewriting the same paragraph. One! Who knows what that paragraph was even about, I had to quit when I realized I took a break and was looking for my phone charger in the refrigerator. I truly could not think straight–and that led to a whole cascade of things happening and a really fun couple of hours on the floor of my moms bedroom where she brought me back to reality. Thanks mom. I don’t know what that paragraph was about,  probably about feeling lost on top of feeling like butt. BUT, no matter the finished outcome, I can say with a good amount of certainty that it wasn’t good enough to warrant two hours of work. I was just stuck. It would be funny if after two hours the end product was like:

Me Mary. Me sick. Times hard. Heartache hurts. Time heals wounds. Time moves forward only. Time is taking a very long time. Hurry up time! God! My mom is hero. Head and face feel like human punching bag getting lots of use. Monty is therapy walking on four legs. Friends matter. Life tough but onward we march. Keep going. It gets better. Keep going. Keep going. Wait stop! OK keep going.

That’s basically it in a nutshell. Anybody want the 5,000 word version? Yeah, didn’t think so. Maybe I’ll talk in cave-woman all the time. It’s pretty efficient I must admit. I think I just have to rest my brain for now, but I didn’t want to feel totally defeated. Writing has always been an outlet, and I’m not letting the disease that shall not be named take it away. So I figured I’d write this post, not read back over it, and just let the world know: Yes, you are kicking my ass right now. But I’m still here. Still going. Bring it.

Health, Happiness, Me Try Hard

*Small note to the world, I was kidding when I said “bring it.” Please don’t bring anything else, we’re all full over here. OK? I was joking and I just wanted to make that clear to the universe. That was a joke. No more shit, K? For real. Cool. Peace.

 

 

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Bananas

 

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Cheer Up Lil Banana

It’s crazy how paralyzing a depressed mood can be, isn’t it? Technically it’s just a crappy
state of mind—and here it is pinning you to the bed, with a few cement blocks thrown on top just for fun. You have to get mechanical. Some practical robotic part of you has to step in start calling shots and you have to let it, or you’ll spoil like a banana in your bed. Nobody likes a spoiled banana. I’m going to get out of bed and let out the dog. I’m going to make a cup of coffee and watch the cream creep around the cup. I’m going to feed the dog and give him water and when I pet him at the door I’ll say something possibly sarcastic out loud like “Monty, your owner might be insane.” Then he’ll wag his tail as though I just told him we’re going to Disney World and it’s made purely of tennis balls that throw themselves automatically. Or maybe he’ll think ‘Jesus, my owner really is insane.’ But already, it’s dissipating. Just seeing his tale wag, it stirs something happy in me and moving becomes a little easier. Get back in bed, put the heat pack on your feet, take the morning dose of those 25 pills and let the blood and serotonin pump and swirl and bring you back to life. 

And now here you are. I don’t know why I’m writing about rotting human fruit, there are so many other worthwhile things I could be writing about or I could be doing despite feeling like a bucket of a-holes. But I guess I can’t handle being on hold with Walgreens anymore, and I also find it interesting that physical movement actually does help fade those thoughts on repeat: the ones that usually aren’t very positive in nature. Movement or change of scene seems to change the channel in your brain somehow, and now the sun is coming in through the windows and you’re sipping coffee and your sentient self starts thinking You know, it’s probably all going to be fine and you’re kind of freaking out over nothing. Duh. Of course it will be OK. I mean, it’s going to hurt, but hurting never killed you before. Let yourself cry, feel the pain—you’re well aware now that it’s all part of the deal. But remember too the ammo you carry; the knowledge of painful times you’ve survived before, where everything was crashing down, things were in pieces, but life went on somehow. It reassembled. It kept going, just like you will today, and tomorrow, and the day after that. None of this is permanent. Just do what’s in front of you. Do the dishes while you have energy. Save the little frogs who can’t get out of the pool. Draw or play guitar or write a letter.  Done and done. It’s going to be OK. Don’t listen to Taylor Swift right now. Or maybe ever. Just kidding Tay Tay. But for real what’s with that new song?

Days like these, where just moving is hard, and it’s not (completely) because I’m sick but because I’m just sad, it makes me think of all the people who have this disease and literally can’t move. They are bedridden, and every morning is waking up to the reality that they can’t just walk it off or change the channel in their brain by changing up their environment or going for a hike. They can’t listen to music they find therapeutic because this disease lives in the brain too—It cuts off sensory pleasure. I have sound sensitivity, I have some days where I don’t get out of bed because I’m heavy and weak and dizzy yada yada, days where the light from the windows is painful and all I want to do is sleep, praying that the next day will be better. Sometimes it is and sometimes it isn’t. But having met the people I have, and learning about those who suffer with severe MECFS, literally living in dark bedrooms—meanwhile people, actual doctors, are still under the impression that gentle exercise will fix this, that cognitive behavioral therapy will most likely help it…It’s discouraging. It makes me mad for them, and I’m not even dealing with a fraction of the suffering that they are. I know that getting mad won’t do anything, except make me physically worse actually, so I just have to do what I can to help fix this thing. It can feel overwhelming when I try to gauge the whole deal and all of the things we have to correct and change, meanwhile I can hardly do my stupid dishes. But I remember: one thing at a time, one project, one idea, one moment. Don’t get ahead of yourself—you don’t even have the energy to do that. I can thank for the disease for that!

I never wrote about it, probably because I didn’t want to jinx it, and also because it’s an extremely vulnerable thing to me, but I fell in love this summer. Like every time I’ve fallen in love, it’s been out of nowhere, fast, consuming, and… a gift. Things are kind of up in the air right now, which is never, you know, the most fun place to be. But I guess if it’s over, there’s really nothing to lose in writing about it now. It’s just hard, either way. Even loving someone like hell, this disease makes every part of it harder. Every breakup I’ve had since getting sick has had a whole hell of a lot to do with the fact that I am often a human wasteland and it’s probably not very fun watching someone be sick all the time. Especially when there’s nothing you can do. You can’t fix it. I don’t know how to be sick and date someone. I don’t really know how to do any of this.

The thing is, I think people assume we’re expecting more than we are. There is something you can do. I think this is where so much of our approach and ideas around being sick go wrong. It’s true you can’t fix the disease. It’s true there will be some very tough days. I don’t expect a dude to swoop in and save me. I don’t think it’s supposed to work that way anyway. The thing to do is just to be there. To make your concern and encouragement known when things are crashing like an airplane. It’s just like people’s awkward reaction to the bereaved who nervously admit “Oh I wouldn’t even know what to say,”  when in comes to being around someone after they’ve suffered a loss. I’ve written it here before but I”ll write it over and over, There is nothing to say. You can’t fix many problems in the world, and it’s such a human flaw to think that if we can’t fix it we have no role to play. 

I get it, it’s really uncomfortable when somebody dies. Trust me, I would know. Nobody likes a crying woman or knows what to say to a crying man, but crying is just what you do, man. It’s the natural way to deal with things. But we get all fidgety about it, we want it to stop. Let the people cry! There, that’s my protest of the day.

Sometimes being sick, on really bad days, I cry. It’s not helpful in the least, and it probably doesn’t make a lot of sense. I don’t even know what I’m saying at times. But when I’m crashing, my mind just feels like it’s melting. And often I’m alone, and the thought always likes to come in and play a starring role in my mind that “You’re gonna die here dude, all alone. Bummer.” Thank you brain, that is really helpful right now. Maybe you could tell me about the worlds water shortage and then also show me some pictures of my friends on vacation. It’s not a true thought in the least, I never seem to die. Hah. And a crash will not kill me. I’m just mentally and emotionally wobbly when my body starts going down sometimes, and there’s not a lot to do. Often if I just sit and breathe and hear something reassuring, like “It’s going to be OK. Take it easy. This will pass.” …The most basic lines ever, I’ll usually be back to my normal crazy self in no time. But it’s difficult to convey what you need sometimes. I can only imagine how hard it is from the outside and I can’t pretend that dating me and my whole….situation…is easy. But what can you do but give it a go. Sometimes it works and sometimes it doesn’t. The important thing always to remember, is it will be OK. And sometimes I just have to repeat that phrase to myself so I remember it and I get a hold of all the useless thoughts floating around up there, like “You’re gonna die man!!!!” No brain, I’m not gonna die. I’m gonna be OK.

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Stupid brain, I will listen to a banana instead!

In the meantime, things can become really hard. They can suck a whole lot. But then it stops sucking, and you keep your eyes open and you keep truckin and life will surprise you. I’ve learned over the long haul: nothing in the last 6 years has been a plan of mine or the result of careful design on my part. I just have to stay open to the possibility of good things, and truthfully, they always seem to find a way in.

If you’re having a rough…whatever, hang in there. It happens. But it doesn’t stay.

Health, Happiness, Bananas

Great Expectations…OK Zero Expectations

Something funny happens when you become chronically ill. Ready? You become totally shitty at fulfilling the roles that probably came easy and natural to you before The Grand Interruption. Parent, kid, sibling, husband, wife, friend–all of those roles are going to suffer, because you’re simply unable to do the things you could before. Your capabilities become limited, your time becomes precious and cornered, and your ability to meet your and other peoples expectations will fall short, again and again. I admit it fully, I’m in general an unreliable source of help, or maybe just unreliable period. And if you don’t think that stabs me straight in the ego, then try saying out loud “I’m a human wasteland” and see how it feels. Because that’s about how it feels.

But we have to be fair, to ourselves and others. We can’t hold ourselves to the same standards as before, especially when we don’t have the same working parts. And we have to remember that the adjustments we make are not adaptations that we alone have to get used to. All those people for whom we provided some kind of role, they’re going to be affected too. They’re going to get exhausted, be disappointed, feel the pain of you not being who you used to be, just as you, the sick person will. I don’t know what it’s like to be a friend or a family member of Mary Gelpi, but I know that I begin 90% of my texts, emails, and conversations with an apology–because I couldn’t make it, I’m responding so late, I won’t be able to attend (insert anything important) I’m sure they become as tired of hearing it as I become of saying it. It’s exhaustive, saying sorry all the time. It’s probably tiresome to be on the other end of it too. But you are sorry, you don’t want to be this crappy of a friend or sister or girlfriend–and while being sick is nobody’s fault, it is the reality and it’s going to be painful. Learning to redefine our roles must be a lifelong process, I’m not sure. I just know I’m still learning.

Maybe a part of being proactive in that transition is becoming more honest and realistic with myself about what I’m able to do. I don’t deny that I suffer from wishful thinking, and probably make commitments I shouldn’t. Letting people know that I can’t be counted on, which is still hard to say, would probably let fewer people down less often. They have to know what to expect, which is unfortunately very little, but it’s up to us to fill them in.  Sometimes you get so busy being sick, you forget to communicate. You forget that people don’t know, or remember. Or you give up on telling them because it can feel repetitive and pointless, but I don’t think that’s true in reality. If I’m not honest about what I can do, out of fear or pride or whatever it is, I will let people down because they won’t know where the line is

I’ve had to face the reality in the last few years that there is no such thing as “solid plans” for me, or relying on myself 100% to be able to follow through with them. Every plan basically has an invisible “tentatively” written behind it. Last month I rescheduled 3 doctors appointments because I was too sick to make it. I have no idea how I’ll feel one day to the next, and that takes constant adjustment. I remember my whole family coming to visit last summer, they were sitting around my living room trying to figure out who could babysit the kids while they went to the French Quarter for the day. I remember sitting in the room saying Guys, I’m right here, I’ll watch them. I was actually, momentarily, offended that they didn’t consider me. Then someone said Mary, you can’t even do your dishes right now. Oh yeah, whoops. I forgot my own unreliability! As Louis C. K. would put it, I’m a non-contributing zero. Hah, yes. That sounds right. I had to laugh that even I couldn’t remember that I just can’t be counted on right now, and as much as that can be a kick in the gut to admit, it’s sort of silly to take it personally. If you’re sick, you’re sick–just admit it and keep moving.

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“Sweetie, can you do the dishes?” “No dad, I’m a non-contributing zero.” “Oh, right. Well, we love you anyway!” “Thanks guys.” “OK now get out of the way so we can do the dishes.”

 

I said in the beginning that being sick makes us crappy at fulfilling our roles, and in the traditional sense that may be true. But it also remains that when you’re sick, you just can’t do what you can’t do. If you don’t have legs, you can’t walk. It’s toxic to compare yourself to an old life where all your faculties were in place, to a new one where half your parts aren’t working. But being sick forces you to redefine your role, and I think there are ways to use your new way of “being” in the world and still be functioning in your respective roles. It’s not as is being sick effects your ability to love. If anything it’s made me love deeper, made me more grateful, and made the friendships that have lasted grow in certain ways. Still, I fail a lot, and many times it’s because I’m a flawed human being, not a chronically sick person. So I try to be extra cautious of both. Like most things being sick teaches, awareness seems to be key.

I’m always asking the questions that I think everyone is asking; am I doing the right thing, am I good person, what am I meant to do with my life? My circumstances? We all have our different sets of assets and vices, and it’s a balancing act trying to find the middle part where your feet are solid on the ground. Becoming chronically sick picks up your lifeless body and throws it upside down and backwards so that when you land you hardly know which way “up” is. It’s a puzzle, a maze, finding your way, but not impossible. The guru’s are always asking “How are you going to use what’s been given to you?” I always looked at that question as asking how I’d use the gifts I was given–the positive things in my life. Now I realize the question is far deeper than that…I think more often they mean, What will you do with your pain? How will you use this Extreme Disturbance to do better? Well hell, I don’t know. I just know that all we can do is try. Many times that means living with the mystery and not the answer. Also not easy to do.

I think it’s possible to use the condition of being sick in positive ways and to also maintain your roles by newly defining them. It seems to require incredible creativity and ingenuity, and I’ve certainly suffered from a lack of those many times. But I know there are ways to transform your old ways into new ones that are equally rewarding but not costly or impossible. I wouldn’t have confronted these conundrums if I hadn’t become sick and lost control of all the things I used to think of as mine. It has at least opened me up to the possibility of higher consciousness, and compared to who I was, I know the Mary without control has a better grasp on reality, is more compassionate, a better listener, less proud and more forgiving. I hope that doesn’t sound like bragging, I just think it’s good to examine the gifts that our so-called shitty circumstances can uncover. I obviously have a long way to go, but I know being sick has opened up deeper channels for me, and transformed the way I see the world and being in it.  Maybe it’s selfish, but I learned forgiveness by having to forgive myself first–for being where I was, for the things I could not do, for always thinking I should be doing better or further along. I had to let the unrealistic expectations go, and forgive myself for not reaching them.

I remember in my first serious relationship, which wasn’t until college, he frequently complained that I never apologized. My response was always “But that’s because I’m not the one who did anything wrong.” Holy cow, I’m the worst! It took years of learning humility and grace that being and saying sorry is a virtuous thing. It means recognizing your wrongdoing and at least becoming temporarily conscious of things you can do better. When you have a fight with someone, sometimes it’s because one person flat-out messed up. But many times, it takes two to tango, and talking things out, forgiving, letting go…all of it is stuff that moves both people forward. I don’t say this pretending as though I’ve mastered the art–I only know it’s there, it’s a choice. And it’s a good thing to know. I don’t know what or who I’d be like, were I still in my structured world, independent, living my life. But I know I enjoy the view from where I am now much more. I almost don’t look at life as mine anymore–I’m not sure whose it is. I’m still the driver, but it’s definitely a borrowed car.

Anyway, I guess this is your healthy reminder to keep those expectations low! And be grateful for the people who love you despite your human-wastelandednesss. They obviously see that you’re still cool despite being sick. And when people ask you to do something you’re incapable of, remind them with a smile: “I’m a non-contributing zero!” Then find new ways to contribute. :)

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“Son, you’re a non-contributing zero, and that’s OK.”     “…Thanks Dad.”

Health, Happiness, New Expectations

 

How to Write About Pain

For a few days now, I’ve been writing about the experience of chronic pain, in a descriptive way that might convey the experience to someone who’s never lived with it before, and also as a comparison against acute/short-term pain, beyond their obvious difference in duration. I think I finally came up with a good analogy to depict the experience of daily pain, the internal battle it becomes, the consuming and exhaustive nature it takes on. But I’m not going to write about that yet. Because also for the last few days, I’ve been questioning why I’ve taken the time to try and get this very unique experience across anyway. I’ve wondered whether it’s futile in the first place, but more I’ve been reflecting on whether the point in it is genuine; if I’m doing a service of any kind, or if my ego has found a formal way to complain. Like Tolle says, that is the ego’s favorite thing to do.

As an FYI, I’ll post about chronic pain next time, because I do actually think it’s important to explore for many reasons, especially if you’ve not been through it. And I’ll write more about why when I come there. But first I had to type out loud, because I question the morality of what I do—writing about my broken body and the battles that accompany it—or if there is any in it, all the time. I constantly ask whether I’m evolving, learning anything, or passing good things along, important things. Or if I’ve sunk to the lowest common denominator of the human experience, something literally everyone goes through in his life, and if it’s just too easy to make that a goal and have it blinded by ego.

I always worry about going too far into how “bad” things can feel. Sometimes, there is truly no point in bemoaning something you can’t control, and it doesn’t help anyone to go on and on about any matter of it. In fact it can easily make things worse, redirecting the mind to focus on negative aspects and intensifying the size of something that you are trying to keep small, in check. Not to mention, you’ll bore everyone to tears. No one likes a whiner, and I try to be cautious about keeping the line drawn, bold and underlined between the two pathways the narrative can take:

One describes an experience so that people on the outside might have a better idea of what his fellow humans are dealing with. It can help expand “common ground”, I think. If it’s done a very good job, it might help replace judgment with compassion, or prevent misunderstanding or a lack of empathy due to disbelief that it’s even real. It helps close the gap between the experiences of two people who have not lived in the others world.

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Guilty
The other path, takes pain and gives it too much of a stage. It exploits something that all humans go through in some capacity and disguises itself as some kind of cursed reward. It gains momentum by reliving the same woes with new words, and by getting others indulge in their own without reflection. It’s not adding anything new or valuable to the conversation. If it isn’t honest or asking for help, if it isn’t uplifting people, but just reinforcing old wounds, it’s fair to say it’s gone south. Ever notice how someone complaining can rub off on you and lead you to do the same, or simply leave you feeling depressed? I’ve experienced it in person, and I know writing and reading accounts can be just as powerful.

Similarly, a positive person, who still acknowledges reality but seems to see through their moment of pain, can leave you feeling hopeful and inspired. The difference is not that these people haven’t endured pain, but what they’ve done with it. How they chose to let it shape them.

I know I’ve crossed over into the negative side way more than I’d like to admit, and probably even fooled myself into thinking it was necessary. Talking about hardship will always draw people in, because we’re all being challenged in our own ways, carrying our unique burdens. But that’s why I scratch half these posts or become too afraid to write about things. It’s a necessary and good thing to talk about the realities we face, because so often it provides people reinforcement, encouragement, reminders they are not alone and the vital belief that they can endure their hardship, just as many before them have, and emerge on the other side. Reading other peoples stories has always inspired and comforted me. Sometimes I distrust myself and skip out on telling certain stories or of certain experiences, but I think maybe it takes practice in reading enough good stories, and knowing the difference between which one will do good, and which one is the ego getting his fill.

I pray constantly to be a source of optimism through honesty, not to exploit a reality that’s in comparison to some, very very lucky. I think you write about pain the same way you live with it, which is to keep in checked moderation and right sized, and attempt to keep eternity in view, somehow. I don’t know how to do this, but I know some good ways not to. So what can I do but try and hope that I’m on the right side of sharing a personal account. Usually if I become too whiny, my mother hits me. Kidding– but you have a big enough family and they don’t let you complain too long or past a certain point, so I’ve relied on them often to keep me in check. A good friend will do the same.

What I’ve learned so far is how easy it can be to start expecting things to go bad, because so many things go bad. But we do ourselves a disservice in becoming convinced the world has conspired against us and we’re doomed to draw the short end of the stick for the rest of our lives. The trouble with that kind of thinking, besides it having no intrinsic value, is that it assumes the rest of the world is riding the easy train to party-town, never confronting a hardship, enduring pain, or drawing their own crappy short sticks. No one has a monopoly on pain. It’s part of all our respective contracts here. So having the idea that your life is hard and everyone else is clueless and has it easy will only make your own pain worse by punctuating it with something that isn’t true, first. And second, that idea undermines the lives of others who do know pain good and well, but whose experience you are now denying, because you can’t see past your own. I cringe to consider how many times I’ve done this, being stuck in my own dark hole.

Pain can be blinding or clarifying, depending on how well it’s kept in check. It can be overwhelming in the moment but when held against the larger backdrop of our lives, it usually highlights what is good, it makes gratitude grow and can help you see with new eyes. If pain is held up only in its moment in the dark, and seen as punishment, bad luck, or some kind of payment you got stuck with and others are getting for free as though its some kind of tax, then you will pay continually, and your relief will be rare. Pain shouldn’t make us proud, it should show us humility. Acting well and grateful and good in the face of pain is what should make us proud.

Sometimes I think of my life from a birds eye view, looking at it plotted out on paper like a map, where I can trace with my finger through the course, beginning to end. When I get discouraged, I think that what I fear is living a life I can’t say that I’m proud of in the end, when I’m tracing my line and seeing how I behaved. I know what will make me proud is having loved fiercely, being steadfast, humble, trying, listening well, finding humor in every stupid day, and being grateful for the lucky life I was given, the family of love I was born into. In the meantime, it feels good to put your head down and work. Sometimes you endure the pain quietly, and know that you’ll be OK whether you tell someone about it or not. I think moderation plays a role, and a discernment in what is worth sharing and what will only exhaust us to speak about. In some way it comes down to self-awareness and restraint.

I’ll end with this passage I read in The Road to Character this morning, a book I’d highly recommend by David Brooks. The first quote is Brooks summarizing George Marshalls training at VMI, followed by a quote from Cicero, which Brooks used to explain the composed, revered manner of Marshall throughout his life.

“The whole object of VMI training was to teach Marshall how to exercise controlled power. The idea was that power exaggerates the dispositions–making a rude person ruder and controlling person more controlling. The higher you go in life, the fewer people there are to offer honest feedback or restrain your unpleasant traits. So it is best to learn those habits of self-restraint, including emotional self-restraint, at an early age…

That person then, whoever it may be, whose mind is quiet through consistency and self-control, who finds contentment in himself, who neither breaks down in adversity nor crumbles in fight, nor burns with any thirsty need nor dissolves into wild and futile excitement, that person in the wise one we are seeking, and that person is happy.” -Cicero

Health, Happiness, Restraint

P.S. This is dedicated to Varney Prejean, the eternal optimist in the face of pain and such a happy, loving, groovy person. If you’ve got an extra prayer, send one out for him. Hang tough Varn-dog, we’re rooting for you!

Apathy, Advocacy, Jumping In

I remember a conversation I had with my mom, roughly six years ago. It was not long after the Great Crash of 2011. I was slumped at a bar stool in my parents kitchen. I’d been crashed a while and not doing very well, physically or mentally. It was a grey, wet Winter, perfectly depressing, and I remember looking out our office window and thinking “I feel exactly like the weather.” I’d been caged up too long, among other side effects. Everything was a reminder of what I’d lost, what I believed the disease took. I knew I should be grateful I had somewhere to go, and I had people to take care of me at all. Not everyone has that, no doubt I was lucky. But I didn’t want help. That kind of surrender is never really easy, but when you’re in need, it’s really the only way to go. Resistance just ends up making you mean to the people who are trying to help you.

My mom was folding laundry, explaining to me the details of a promising new study going on, something involving the gut; I wouldn’t know because I was barely listening. She told me that I should follow the research and recommended I read a blog called Phoenix Rising, a veritable A-Z of everything MECFS. It might help me feel better if I at least understood more about the disease, on many levels.

But I could almost feel a visceral resistance to this idea. Ironically, I didn’t like reading books or blogs or stories about this disease. They only reinforced what I already knew, and they all ended the same—no one got better. I can remember holding back tears, angry tears I guess, that I didn’t want to read anything about this disease again unless it was an article touting that they found a cure.

They?

(Insert really awkward DC photo)

DC
So terrible.
6 years later, I found myself frozen in the doorway of room 129 in the Rayburn Building in Washington D.C. I was attending an event called “The Storm on Washington“–an event I felt a strong pull toward for a few months.

This room would be our “MECFS Command Center” throughout the long day–a place to commune in between meetings and rest, eat, talk, or collapse. (Really, there were beds) I hadn’t even entered and already I could feel the warmth of the room from so many bodies insides, at least 10 degrees hotter than the icy hallway. It was 9 am and a low, indecipherable murmur pervaded the room from multiple conversations–introductions and instructions and attempts to achieve order among a really huge, logistical effort. I stood there like a lost puppy, watching the quiet chaos unfold. I knew not one person. What the hell am I doing here?

Doctor
Meeting the MAN, Dr. Nahle
I was doing what I’d done many times before–jumping in without a clue. But I was among smart and determined people. The principal reason for being there was pretty easy anyway–to share my story, to try and humanize this disease and convey the experience with decision-makers. I’d told my story plenty of times before, I’d become pretty practiced.  That day 52 advocates would meet with over 70 congressional offices and representatives. A success in just making that happen, in my book.  (Thank you MEAction and SolveMECFS!)

It feels like there have been many beginnings to my entrance into the advocacy world. A place I never thought I’d enter, for reasons I’m still unsure of now. Bitterness maybe. Fear probably. I still feel like I’m hardly making a dent, but I am trying, finally. Bitterness, self-pity, doubt–all of those feelings depleted me, when I was already emptied of energy. They still come around. But finding small glimmers of faith that you might be where you’re supposed to be, even if the circumstances are crap, feel energizing. Any time I’ve come across hope, it’s like a flashlight turning on in a cave. It’s somehow always led me out, even if very slowly. But it usually means some kind of surrender; giving it a chance. I don’t write this as though finding purpose in a painful situation is easy. It’s not. Particularly chronic illness, which is long-term. It took a long time to figure out that I could still even have one, as I was. I still lose my way from time to time, and wait for a flashlight to flick on that I can follow.

I didn’t know when I published the petition last year that I was entering the world of they. Nor did I really know what I was doing then either, surprise surprise. I was following intuition and telling the truth, that’s it. But the same energy that brought me to DC encouraged me to write it. Call it the universe, or God, the collective unconscious, or soul–something outside the 5 senses was helping me out. I just sort of followed the scent.

Admittedly, I’m bad at campaigning. Gary Zukav says that when our soul and our intentions are lined up, the universe backs us in big ways. Maybe that’s what happened when it gained something like 20,000 signatures in a day. I was also lucky that my sister does know how to campaign, and my enormous family, circle of friends and other advocacy groups pitched in, all in huge ways, and now that petition has 42,000 signatures. When I wrote it I had my fingers crossed it would reach 1000.

Did 42,000 signatures fix the problem? No. But it did something else important. It connected me to so many people through the feedback page, where people can leave comments. People shared their personal stories, their loved ones stories, gratitude and words of encouragement. Total strangers said they’d pray for this effort. Every time I read one of those comments it made me want to work harder. It showed me how far-reaching and devastating this disease can be.

I thought had it bad? Talk about small potatoes. The petition did two things: 1. Showed me I could have it a lot worse, so easy on the self-pity, chief. 2. Stopped me from looking the other direction. Coincidentally, that’s exactly what we’re asking the government to stop doing now.

It was the petition that led me to connecting with an MECFS advocate online, who knew the D.C. Aide for Bill Cassidy, a Louisiana State Senator. I contacted him, which led me to a meeting with Cassidy’s number 2 guy and the Louisiana State Director, Brian McNabb. Meeting with McNabb for 2.5 hours, discussing everything MECFS was an incredible experience. Did it change anything? Maybe not. But it encouraged me big time. And in the end it scored me a meeting with Senator Cassidy. McNabb warned, it would be in between two events so it’d have to be quick, maybe 5 minutes. I said I’d take it.

So, I met Bill Cassidy in a parking lot on his walk to his car with a group of staffers surrounding us.

Cass
Parking Lot Office
I had to talk fast as he was late to his next meeting and his assistant kept saying “Sir, you’re very late, we need to go.” I spat all the vital things out as fast as I could. Knowing I didn’t have long, I left him with a folder where I’d printed out 25 pages of peoples comments and stories that they’s shared on the petition page. Did he read them? I’ll never know. But he looked me in the eye, he shook my hand, and he told me out loud “I really care about this issue.” I told him thank you, I couldn’t express how much we needed people to care. He said he wanted to continue the conversation when he had more time. We were being herded like cattle to his waiting car. A cynic might say he probably says that to everyone, but it didn’t matter. Here was one more person who had now at least heard of this disease and the issues, and also had some decision making power. His assistant who had hurried us both while listening to our conversation, started to get in her car, but stopped, got out, and gave me a hug first. Good stuff.

Later, my uncle who is a mutual friend of Representative Steve Scalise, had seen my “Chronic Fatigue Syndrome Song” on the petition page–a mostly embarrassing but celebratory song I wrote after hitting 40,000 signatures. He thought it was pretty funny, and asked if I was interested in a sit down

Scalise
Obligatory Photo, Thanks Mr. Scalise
with Steve Scalise, a Louisiana Representative and the Majority Whip. Umm, yes. So not long ago, my Uncle Paul and political mentor, Rep Steve Scalise and I all sat down for a while to talk MECFS. He was another kind and engaged listener. He asked good questions and was generous with his time. I told him my story, I attempted to tell the story of MECFS among my hiccuping brain, and Paul helped me convey some things when my words turned to spaghetti mid-sentence.

Would this meeting solve it? No, but it was one more person who now at least knew of the disease. Someone with decision making power. Count it.

It was exactly one week after that meeting that Scalise and others were shot in a baseball field in the middle of the morning. What?! I am as clumsy with thoughts as I am words when it comes to events like that. It’s so hard to understand, it happens way too often, and I still feel far away from it somehow. As cliche as is, I’m praying and sending healthy thoughts his direction and the others injured that day. How this all plays out in history, we can’t know yet. Maybe someone is reading this in the year 2045, and it will all make sense.

Why am I writing this now? Because I need the reminder, which is very obvious but I want in words anyway, which is just to try. A reminder of how much happier I feel when I go for it, even when I don’t know what I’m doing. A reminder that writing 15 versions of this one stupid blog post over the course of a month is mostly a waste of time. Just jump in. It’s not always complicated. It will never be perfect, but it’s almost irresponsible not to try at this point, and to keep trying, over and over.

I continue to walk the thin line between fighting for a cause I whole-heartedly believe in, and surrendering to circumstance and the things I can’t control. I’m always learning , that a sick life can be a good life too–and I hope can still become a person I can say I’m proud of in the end. It’s easy to cross over too far one way or another, but if I stop trying, I’m a gonner. Sometimes I fail. There are many (funny) stories where I blow it. But it feels so much better to get out there and blow it, then to act like a bitter teenager on the sidelines, thinking pain was never a part of the deal. This is the reminder; try. You always feel better when you do, so do.

Health, Happiness, Tryin