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

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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

Breaking News

(Not Really)

Toward the end of this winter, I sat in a bathtub, tears coming down my face, and prayed for change. Things had been stationary and repetitive for too long. All my parts, body and mind, were beginning to go stir-crazy, and I’d given it a solid go. I think in modern times, being confined to the same two rooms for long periods of time without real socialization and not going totally insane is a kind of victory on its own. Things went from stationary to stagnant, and I’m pretty diligent about avoiding that disposition. Undoubtedly, it started to wear on me. I closed my eyes and envisioned the “path” of my life like a black dotted line on a treasure map–obviously th line had been very straight for a while. But I visualized that in the spring the dotted line would take a sharp turn, still progressing, still moving in the right direction or whatever, but that there would be a marked change. It would stir things up, it would springboard the stagnancy of sickness and the same two rooms and same faces at the pharmacy and pop them into the air like popcorn. I wanted an interruption I guess. And I felt tired waiting for one.

The thing about change, I was beginning to realize, is that it has a lot to do with you (me) and less to do with crossing your fingers and waiting around for it. I admit, for a long time in terms of the illness, I did that in a certain capacity. I’ve hoped and prayed for a cure ever since I became sick, but I was never involved or deeply curious in the process of how that could happen. I wasn’t a part of online support groups for ME/CFS. I was never really involved with advocacy, and I didn’t follow the latest research or science. Sometimes people would send me articles from The New York Times or some Magazine that would tell the story of someone sick, usually summarize the history of CFS mostly on the surface, and then reveal the prognosis, which was that there was still no cure and no approved treatments. Once, I was sent a New York Times article called “Chronic Fatigue Syndrome No Longer Seen As ‘Yuppie Flu’” You’d think in some way, a major and respected newspaper validating your disease would be a comfort, but to someone who’s been suffering for years from it, it was more like Yeah, no shit. It’d be like seeing an article titled “Water Found to be Necessary for Survival.” My mom, who follows every study, reads up on trials and new findings, would update me often in an optimistic tone. But I can remember, in the first year after the crash that I’d stopped working and was living in their house, I felt angry and remember telling her I didn’t want to know about any more studies until there was one that found the cure. I was clearly still in the “acceptance” phase of this whole thing, and that was a prissy reaction to say the least, but I just never wanted to get pulled too far into the “community” of the illness. I felt if I entered in too far, which would be easy to do, it’d take me over, consume my identity. And I battle myself a lot in avoiding that transition–I don’t want to turn into the ‘sick girl.’  There are just so many other things I want to do and express, and sometimes the illness feels like it controls too much of my outer life, after already having control of my insides. It’s a strange, duplicitous struggle to face. And some days I feel like the illness wins–not in terms of my body, but my mind. That’s what I try to avoid.

Last week, a news crew was at my house. I say crew, but it was really just two people. An interviewer and a cameraman from Fox8 News New Orleans. It’s funny how it all came to happen, but stars aligned in certain ways, and now news-anchor Rob Masson was interviewing me in our living room. We talked about the petition, about getting sick with this weird, elusive, invisible, strange disease. He was a great interviewer and he understood the illness well. You can tell when someone gets it by the questions they ask. For instance, a person who doesn’t get it asks questions like “Do you think if you did more during the day, you might sleep better at night?” And a more intuitive person might ask “So how do you prepare for an event you know is coming up? And how long do you pay for it physically?” Rob and I had talked already on the phone about the disease, the NIH, the history and the campaign for nearly an hour a week before. Then the day of the interview they ended up staying two and a half hours at our house. (It will probably be a two minute spot) They spoke with me, my mom, and shot footage of Monty, of course. . Normally, the idea of “being on the news” even local news, would stress me out. Mainly because internally I’d think “Why do I have any business being on the news? I’m just a sick person living with my parents?!” But the reassuring and truthful answer was that this really wasn’t about me. I’m an example of one among millions of people living with the disease, and I felt I could speak up for it in that way, provide an example of what it “looks like”–which is nothing. You couldn’t pick a person with ME out of a crowd, but it’d probably be the one lying down using some odd piece of furniture as as a bed. I was/am exceedingly grateful this petition made the news, mostly because I think any press that shows what this disease looks like and is told from the angle of someone who is actually sick, not a psychiatrist speculating about it, is always a good thing.

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(Not Rob Masson)

But the real angle was the campaign, which is also not about me, but about the NIH, and how their lack of funding and research has left millions of sick people without a place to go. You can count the number of CFS specialists with one and a half hands. The reason I felt optimistic writing this petition is that this is a problem with a very clear solution. It has always had a solution, and in every article, blog, comment debate, news story, I see the same desperately needed solution being pointed out, which is funding. The disease is complex, the research and studies and science is complex, but some of the top virologists and infectious disease specialists in the world are signed on to study this, say they can solve it, they are simply lacking the funds. It just seems so simple in that regard. It’s obvious this can’t be ignored anymore. This is an epidemic, and I know that word is overused a lot, but when millions of people are out of commission, and the country is paying billions a year in lost productivity and medical expenses, I would call that somewhat of a health crisis. So, it’s time. And Mr. Collins and Secretary Burwell can make it happen. I know they can.

I’m still learning how to be an advocate. I don’t know if it’s really my calling. My sister on the other hand should consider this as a career option, she’s really good. :) I’m still trying hard to attain more signatures because I’d like to get as many as possible for the protest on May 25th in DC. The power in this method of “protest” is in numbers, so I’m still thinking “Hey, we can make it to 35. And if we can make it to 35 we can make it to 40!” 40,000 has a nice ring to it, a more sturdy number. Anyway, I trust we’ll get the number we need. And I still have the hesitancy of not letting this fight, win or lose, enter too deep into my identity. In my attempt to share the campaign with every CFS organization, I’ve sort of leaped into the Chronic Illness Community…and everything there makes sense. I see myself in all the stories. I recognize the descriptions. I understand completely what people mean in their emotions and discouragements. But sometimes I have to just dip a toe in..share the petition and then get out. If I spend too much time there, I don’t know, I feel too consumed by it. And those are my brothers and sisters! It’s not that I’m turning my back on them, I just live it and write it enough as it is. I guess I don’t need reminders right now. I’m more hungry for change.

This petition I hope can speak for us all. Maybe I will just always be fighting to remember who I am, to hold on to some remnant of myself that was there before I ever became ill or ever started “fighting for a cure.” In one part of me, a flame has been lit and I feel ready to take on the world and achieve this change. Halfway because I’m bored of it. It’s so obvious what we need to do, and I know it will happen eventually, I’d just like it to happen sooner so we can all get on with other things. The other part of me thinks I can write through the filter of being sick till the cows come home, but there’s so much other subject matter out there. There’s so much else to do. And I want to explore it all. There are so many other stories I want to tell. And I think I will. I’m just a little in between worlds for now. Fighting for this cause and also trying to stay conscious of who I am without all of this. Dive too deep into anything and you can get stuck there. Maybe dive is the wrong word. Attach. I don’t want to become attached to this. I want things to change. And then I want to travel to Japan.

So, that’s what’s happening in my neck of the woods. Physically I feel like absolute crap, which is the most efficient and motivating reminder to keep fighting for this change :)  I don’t know when the news segment will come out, though I can already anticipate my self-consciousness about it. I don’t like seeing myself on camera or hearing my own voice. I am fat from the steroids and hardly even feel like I’m in my own body anymore. And it’s a vulnerable thing–I never imagined I’d be interviewed by someone and talk about being sick, 31 and living with my parents on TV. I mean, this could really ruin things for me on Tinder. But the TRUTH is, none of that matters. It’s not about me or my story or whatever I’ve lost along the way. This is about the campaign and what’s next. It’s about what we’re asking for, which is a very specific thing: $100 million bucks. It’s not that much money, come on! But, if the segment goes online I will try to post it here. So, once again, I will shamelessly post the petition, and if you feel like signing or sharing because you haven’t yet, I recommend you do so I can stop writing about this stuff and my sister can stop pestering every person she knows to sign it. Amelie, I love you. Thank you again everyone for the love and support and signing. I guess that dotted line I envisioned making a sharp turn ended up happening in a very strange way. Life is funny.

https://www.change.org/p/increase-funding-so-we-can-find-a-cure

Health, Happiness, HEY MOM IM ON THE NEWS!

You Know What To Do

(Or if you don’t, it’s Signing this petition..that’s what you’re supposed to do..just in case there is any misunderstanding there. OK then..)

Friends, Families, Duders,

This is one of the most important posts I’ve published here, and I need your help. It’s been a very sick winter/spring for me and I’ve worked hard to try and stay positive, maintain hope, and keep from getting overly discouraged. I don’t always succeed in this, but I try my hardest and I have a lot of reinforcements: my dog, family, loving friends, and funny internet videos that truly sometimes help shift me into a lighter shade of blues. I found that one another way for me to maintain hope and stay positive about my life is to at least try and influence change in regards to how this disease is treated, both socially and federally. Things have already begun to change in a few ways in just the last few years, and I have always held onto the hope that I will see a cure within my lifetime.

Yesterday was particularly hard for some reason. Physically things have been roigh, but emotionally I was really feeling it– all of it. Sad, mad, hopeless and discouraged. My phone rang and it was my sister calling, but I didn’t feel I could even get it together enough to pick up the phone and say that sinply, I was a mess. So I texted it instead and after going back and forth a while, I decided there Was this one thing I could, something I’d been putting off for various reasons, none very good, that could help pull myself out of that dark hole, and that was to invest myself into a cause that may have the possibility of producing real change, of making a vital impact on CFS/ME. I think and pray often that other people will do things and enact change and that I will eventually reap the benefits from them. But that’s a somewhat limited hope. And it leaves all the possibility and power out of my hands, when the truth is we all have the means to effect change (even be it extremely small) if we believe in it and work hard enough. That’s what inspired the campaign I wrote using the platform change.org, which helps deliver our message in a very efficient way. I like that it gives a chance for all our voices to be heard, bed-ridden or not, and only requires a few seconds and click of your mouse t have it be heard.  It’s a great alternative in lieu of a “March for CFS Awareness and Funding!” I think we all know how that would turn out…

We’d start out like “Yeah!!! Race for the Cure!! Screw CFS!!!

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Let’s Run and Raise Some Money People!
But then in a matter of, oh I don’t know, 5 minutes..the scene would inevitably change.

So, since a “Race for the Cure” is not exactly in the realm of possibility for a lot of us, but access to the power of the Internet is, I know that this is a great option for us. We’ve just got to acquire as many signatures as possible. Signing this campaign, which asks the NIH for a larger chunk of money to be allocated toward CFS/ME research, is a way to get this message across quickly and with bigger impact. I also like this methodology, because each time someone signs the petition, an email will be sent to the Head of the NIH and the Secretary of Health and Human Resources, and these are the people who have huge influence on how this disease is treated at the CDC–in particular how much money is dedicated to its research. This is our chance guys, so please please please, sign the petition and share it if you’re feeling extra awesome. I have copy and pasted the campaign here so you can read it, but you’ll need to click the link at the bottom of the page in order to sign it. That’s all it takes, the click of a button.

I thank you all in advance for taking part in this, and I truly believe if we circulate it in a wide enough circle, we can influence some major, desperately needed change. But we have to act. So sign it! Then get back to dicking around on the internet. I mean working, or whatever you’re up to. OK, here it is.

Petitioning Director of NIH Francis Collins and 1 other

Demand Increase Of Research Funding To Help Cure “Invisible Disease”

All I want to do is take a bath.

Before I became sick, that wouldn’t be so hard. Now walking is hard. Standing is hard. Some days, I don’t leave the bed and weeks can go by without my leaving the house. I call in sick to doctors appointments and take between 25 to 30 pills a day just to manage my symptoms, but they do not help the disease. I am 31, and I wasn’t always this way.

My heart is heavy knowing that roughly 3 million other people in our country are suffering from this same disease: Myalgic Encephalomyelitis. ME/CFS is a complex, multi-systemic illness that causes a lot of pain and disabling symptoms, specifically severe weakness and crippling fatigue brought on by even minor exertions–taking a shower, walking to the mailbox, or vacuuming the living room can land you in bed for days. There are currently no FDA-approved treatments and no cure, so we are left fighting this crippling disease in the dark. I was diagnosed with this illness at age 9, a happy gymnast at the time, at which point very little was understood about it and we were left with few options. I slowly regained much of my strength but at age 26 I suffered a severe relapse, could no longer work or take care of myself and had to move in with my parents. Despite twenty years having passed since my initial diagnosis, there are still no FDA-approved treatments and no cure. How could that be?

In a word: interest. In a bigger word: money. For more than a decade, ME/CFS has lingered near the bottom of the Allocated Funds list at the Center for Disease Control, never acquiring more than $6 million annually for research. This may sound like a substantial amount, but to provide some context, Male Pattern Baldness receives $12 million a year, so it’s easy to see that our meek amount is on account of low priority, not the result of insufficient funds. This is why I am asking the director of the NIH and the Secretary of Health and Human Resources to increase the funding allotted to the CDC to $100 million per year to research this devastating disease, so that the millions of people afflicted by it who’ve lost their jobs, families, and overall livelihood might finally have a chance at a healthy life again. Whether the lack of action originated from the stigma of the inaccurate, alternate name it was given in the 80’s, (Chronic Fatigue Syndrome) or the fact that it effects mostly women, I don’t know or care anymore. All I know is that we’ve waited and suffered long enough. It’s a time to come together and solve this health crisis, and I know that we are capable.

There is no better time for these agencies to step in and deliver on what’s been promised. The NIH received a $2 billion dollar budget increase this year, and two independent reports from the Institute of Medicine and the Pathways to Prevention have emerged recently calling for An urgent increase in research funding for ME/CFS, both noting how dire and overdue this situation is.

Governing agencies have always played a huge role in how diseases find treatments and cures. Similar illnesses like MS and Lupus are allotted $100 million each, per year, and collectively they effect less people. Due to these higher funding amounts, both illnesses have diverse and far more effective treatment options under their belt. This is how it’s supposed to work, and I know the current SHHR and director of the NIH are the right people to step in and change the game. We can do better, and so we should start now.

I used to have a pretty outgoing life. I was able to travel in college, fall in love, live in France, enjoy SEC Football, and graduate. Now most of my days are sedentary,  spending a lot of my time in bed with my dog and best friend Monty (see photo)– reading, writing, or sleeping. Sometimes it feels like life is passing me by right outside the window. Truthfully I am lucky when compared to the many people who are sick with ME/CFS and don’t have the help or resources that I do. I especially write this campaign with those extremely ill people in mind–too sick to have their voices heard and suffering alone. The point in all this is that it doesn’t have to be this way. This is something we can change. The country loses billions every year in lost productivity due to this illness alone, and so many of us would want nothing more than to enter the workforce again, if we could only take a shower without having to spend the next whole day in bed recovering.

Please help keep the promise of bringing this invisible disease into the light and dedicating the much deserved attention and funding to it that it’s lacked for all these decades. By signing you will help give millions of sick people hope that they are not forgotten, and show our governing institutions that we trust in them to step in and follow through with improving the health of millions of people, many who are desperately sick. I know with the proper resources, this is something we can treat and ultimately solve. Please sign and share this petition. We can do better, and the time to start is right now.

Thank you.

Mary C Gelpi (and Monty)

#WeCanDoBetter

Click Here to Sign

 

This petition will be delivered to:
  • Director of NIH
    Francis Collins
  • Secretary of Health and Human Services
    Sylvia Burwell

Click here to sign the petition, and copy and paste the address below to share it any way you want.

https://www.change.org/p/ask-nih-for-increase-in-funding-to-help-cure-invisible-disease

Again, thank you. #WeCanDoBetter. So let’s do it.

Health, Happiness, CHANGE

Hangers On a Ledge 

I run these ideas through my head, trying to piece it together. I try to make sense of a history that began before me and most likely, I’ll never really be able to figure out. Whenever you’re trying to find where things went wrong and how you can make them right again, it can all feel too big, too long ago to find solutions that make sense now. But still, the red part inside of me that stirs as though it has a body that can do anything, tells me this is something we can fix. We can do better–those words, they play over and over.

I travel back in time, the early 80‘s I guess. That’s when it started showing up in different places and on unexpected people, and the powers at large weren’t able to connect the dots. It’s understandable of course–the thing is literally invisible. Maybe the lack of pressure, lack of genuine concern about the disease began there–at a moment in time where it couldn’t be ‘seen’ under microscopes and wasn’t ‘believed’ often by the people who were suddenly sick and then never better. Maybe it was that the thing wasn’t killing anybody. Nothing fatal. Just a flu. “A yuppie flu” they called it. Not only are the sufferers alive, but they don’t even look the part! They aren’t sick on the outside. And rearranging my position in all this, putting myself on the outside looking in at this “movement” of unexplained sick people, I understand how this notion worked against us–how it continues to today. I think of the old adage “What doesn’t kill you makes you stronger.” That may be true in many cases, but I can’t say it applies aptly here. Not in regards to our bodies anyway, which upon the slightest push can fall and not again get up.

What isn’t killing me is not making my body stronger. I am the least strong I’ve ever been. The medicine has caused weight gain that at times has me and my face looking like a bloated pumpkin. It’s hard not to feel at battle with the thing that is intrinsically connected to me, and between us exists a fine line of fighting it and not fighting it at the same time. The whole thing is an honors class in balance. Some days are better than others, and I wonder, am I stronger, or am I just less sick today? There remains a difference. But I’m probably focusing on the wrong area here. No doubt that in our minds, the adage applies. When every day is a battle, beginning with waking up, with sitting up in bed and planting your feet on the ground and taking those first few painful steps to the bathroom, and doing this day after day after day, for some of us years and decades, well then no doubt your mind will grow stronger. It can also grow cynical, it can become   bitter–but many times you’ll surprise yourself with the strength you find and the moments you find it in. If you can keep trying, if you can manage a smile and a laugh, to be happy for other people, to still believe in something good, then certainly you haven’t been killed, and the battle has made you stronger. But that is our mind. Or the soul maybe– An almost contradiction that is both a connected but separate faculty from the body. Refer to the ancient philosphers and you’ll find some disagreement on the subject. I think in either case, for the mind the body is only temporary. And this brings a relief to me. Whatever happens to me physically, I won’t be carrying it forever.

I think of all the others, sick like me, dreaming and hoping and feeling desires like the rest. It’s strange how our indignant heads are alive and full, swirling with ideas and goals just as though we had a body that could serve them all–make them all come to light. But at present time we don’t. So call us “alive” and say we “look well,” but know there is only a very small surface of which most the world sees. And the majority of life with this illness falls far below it, in a darkness underneath that very few see. Some can’t see it. Some don’t want to. Others just haven’t had the access.

It’s funny thinking about that word “alive.” Sure, we’re alive. But there’s an important difference between living and surviving. “Just getting by” physically, is hard to equate with living. And worlds away from thriving, which might be called a pretty commonly desired endgame. We, however, are hanging on by a thread, and it’s hard to call an existence like that “life” with any real conviction. It’s similar to hanging at the edge of a cliff and grasping it by one hand– would we really call that hiking?

That is the point where many ME/CFS patients are: hanging on with a half-steady grip, still breathing, still a beating heart inside, but stuck; Left with few options but, you know, to go on hanging there. It’s hard to have a social life or work a job or vacuum your living room when all of your mighty, tiny strength is being poured into hanging on to this cliff. It’s no wonder why so many people have it let go. There is just not enough hands at the top, not enough people offering help to pull you up, and no safety net at the bottom. And similarly, just as pulling a dangling body up off the edge of a cliff is a difficult but achievable task, a “problem” with more than one possible solution, curing the disease that has millions of people hanging by their own one or two threads is equally obtainable. It’s just to a larger degree. But it’s far from Impossible. And it would involve a few similar tactics: some people at the top, those say, for whom walking and standing is not a great feat, and who themselves are not also hanging off the edge of a cliff, combining their efforts and resources and intelligence and getting to work; finding a solution, in this case a cure.

Never having the experience of rescuing a person dangling off the side of a high-up something or other, I imagine that a rescue is within the realm of human capability. There are many ways to go about it, and maybe I’m being sort of dense here, but I’d venture it basically comes down to people lowering themselves to the ground, extending their arms to the dangling human, and with a great amount of strength pulling the person up until he’s back on his feet. And while maybe the tactic is basic, the act itself requires a solid effort. Lifting a person from this particular state is like trying to maneuver deadweight– Much easier to carry a body which is alive even if incapacitated, than one that’s dead and stiff. I’d like to emphasize that I’ve never hauled a dead body around but I’ve tended to my share of drunk friends who had 6 too many, and it would take 3 of us just to get the person, alive with a LOT to say about the world and true friendship, into a car. The very obvious point is, saving the person who’s still hanging there off the edge while I write this, is a very doable thing. And I know I’m comparing apples to oranges, or apples to bowling balls, but I believe with every part of me that this issue of solving or at least better managing this disease has never been on account of inability. This is something we can do, we’ve simply chosen not to based on some very obtuse, very lacking scattered pieces of information that cannot be labeled as facts.

Me, I can’t rescue the hangers on the ledge. Of course I can’t, I am one. But therein lies the kind of rescue I can provide. I can hang off the ledge next to you. Because there is something undeniably comforting in knowing that whatever struggle you find yourself facing, that you’re not in it alone, and that others are in the same boat. Or off the same ledge as it were. Like I mentioned, you can’t do a lot while devoting all your energy into grasping your spot on the mountain and not letting go. I can’t march in front of congress demanding to be seen, nor can I carry out the hundreds of other ideas I have that I think could make a difference, could help change the state of things in a positive and progressive way. But I can do a little. And thanks to modern times, maybe my little could turn into a lot. As I write this, I am laying down in a dim room in my moms bed. I have a frozen ice pack on my forehead and around my neck, with a hot pack at my feet under the covers to help draw away the blood from my head, which is throbbing like always. And yet I am still able to write, thank you very much Steve Jobs, on this rectangular dense brick otherwise known as my phone. It’s often hard to sit up comfortably with the computer in my lap and so being able to jot everything down from just a small device is kind of a miracle. Very often, while either FaceTiming with my niece or buying dog food from my phone that will be at my door tomorrow, I this is it-we’ve arrived at the future. And yet, I don’t even know how a calculator works.

The point is, healthy or functioning or bedridden or whatever, there are little things we can all do, in our own way, that can help change things. And yes I hear how corny that phrase played out. Recently I watched an interview with an author and Benedictine Nun named Sister Joan D. Chittister. She was really inspiring to watch. An author of over fifty books, she writes about about many topics including spirituality, women in the church, and social justice. She is clearly leaving an amazing footprint on the world through her written and continued community work and is firing up others to do the same. She said she is often asked by people “What can I do to help change things.. To fulfill humanity or to better the world?” Her answer is very stripped down. “Something.” And her brilliance was immediately illuminated in her acknowledgment that speaking up for a friend is as big as a March on Washington. “Just do something. Wherever you are with whatever you’ve got. When you see an injustice or see something that needs changing, do something. It doesn’t matter how small, just do something.” Of course this answer resonated with me. I often get discouraged about the state of things concerning the disease and the state of my life and all the change I wish I could make happen but physically I am unable to. But I forget that small changes, small acts can have huge impacts when carried out diligently. I have so many big ideas, big dreams that I hope to achieve one day. But I also have to remember that one day is now, and it’s probably better to focus on what I can do today, as I am and with the resources I have now. And I think putting in the work that might feel small, that isn’t NY Times worthy, doesn’t mean it lacks the chance to make a difference. There’s a feeling you get when you pour yourself into something you care about, that seems to carry out a mission from deep inside you, even if you don’t know what that is exactly. I get that feeling every time I sit (or lay) down to write. I may not know for a long time what the role of all this is or how it will play out in the larger context of things later on down the line. I just know it’s what I can do now. It’s my something, so I’ve got to keep at it.

It’s been a pretty sick and trying few weeks for me, and I feel often that accessible moment of how easy it would be to just throw in the towel, or to become hardened by the relentlessness of the experience, but I want to remind the other hangers on the edge out there to hold tight, because not only are there rare gifts to find within all this, things will change. They have already begun to. Today will become tomorrow. And one day soon enough, this will all be a memory of something that yes, didn’t kill us and made us stronger. Hang in there. Hang on. It is going to get better.

Health, Happiness, Cliffhangers 

Love Letter To My Valentine

My love,

I’m well aware of your rare but genuine lack of sentimentality, and me addressing you on Valentines Day, one of those Holidays that makes all the whites of your eyes show when you roll them, is at least a little funny to me. I didn’t buy you one of those trinkets we often laugh at together. A “Blessed” keychain or one of those wooden picture frames with the non sequitur adjectives sketched in, meant to communicate love I guess. Love. Family. Hope. Frying Pan. Coffee Beans! Maybe we’re too young to be such skeptics. Maybe it’s our hiding ego, projecting superiority that we don’t need kitschy picture frames to allude to what’s real and shared inside of us. I’m in the card aisle at the pharmacy looking at a criminally large sized teddy bear holding a heart. It says I wuv you on it. It’s similarly tacky, but I consider purchasing it just for the laughs I know we’d have due to the scale alone; I actually don’t think I could carry it on my own. Then we’d feed it to Monty and watch him go straight for the eyes, as always, and fill the room with the cotton candy innards of a fifty dollar bear. But I hear your words play out in my mind “Don’t ever waste a dime on crap like that for me.”

I could lament about the commercialization of Valentines Day, but I think it’s all been said before, and I already know you’d agree. In fact I’d bet the farm you wouldn’t even bat an eye were the whole thing eradicated. You might not even notice! You’re funny. It’s not that you’re distracted, unaware. I’d suggest it’s the near extreme dedication to living a life of unwavering, powerful love, that is a fireworks display of a spectacle to watch. But for a lucky few, myself included, it’s a humbling miracle to be the recipient of. It sounds so dramatic to say, but I stand by that belief. It’s not hard to do. There have been plenty of reasons for your heart to have closed shop by now. To crack and break and crumble; call the whole thing off. And yet I’ve witnessed it come to the edge and never truly break. Instead I watch it explode like our day lilies in the spring, I watch it grow, astonished, in times that might normally make a person very small. And still yours expands, stretches, finds strength somewhere far in the depths and suits up for another day, knowing well the many things at stake when we agree to live a life. When we agree to love deeply. I don’t know exactly how one attains the capacity to love like this. I can only speak to the immense gifts of wisdom and friendship and compassion it has provided so many lucky ones, and me, knowing too well that ‘thank you’ isn’t large enough a phrase. I think how redeeming and salvational some of its outcomes have been. We’ve all experienced the pang of loneliness, and these last few years have shown me with unbridled truth just how far off and away we can feel, whether in a crowded room or a self-made island. Illness lends itself to its own kind of solitude, that can swallow you up whole if you aren’t prudent. Never have you let me drift too far down the rabbit hole. Sometimes sitting in a room with you, watching The Voice or Scandal or something I have no particular interest in, I feel wrapped in a sanctuary at the center of cupped hands, protected by the thick walls of a steadfast love that I know can never die. For two stoics like us, I can’t help but think ours is a Fairy Tale love, without an ending. We both know there won’t be one. Maybe I’ll submit it to Disney.

I keep thinking of this moment. A grey morning in December not long ago, I was more sick than usual. My central nervous system inflamed to a point that I could hardly tolerate sound or speak. My skin was buzzing, my hearing hurt, my thoughts and words felt and emerged mangled, and I couldn’t exactly articulate what was wrong. I felt like a shaken up liter of coke, hardened and about to fizz out everywhere, but there was no outlet. No where for the ‘fizz’ to go. My nerves felt inside out. When you came in the room, I tried to express what was happening but had trouble; honestly I hardly understood it myself. You didn’t look away, or demand answers or try to immediately “fix” the enigmatic pain I was in. You only said a couple words to me as you sat down on the couch and cupped your hand on the back of my head. “It’s going to be OK Mary,” and your voice cracked when you said it. My body felt as if it collapsed inside, calmed with this soundbite of peace, and the pressure slowly eased from that liter coke bottle. Tears came streaming down my face. I wasn’t that sad, truthfully. Certainly, all of this has been a trying time, for all of us, but there was a lot happening at once, my mind and body both being pulled and torn in different directions, and your very simple words allowed me the outlet. Permission. It’s pretty common for the tears to come when I feel so overwhelmed, overtaken physically. But it wasn’t your words exactly that moved me and conveyed your love with such depth. It was that your voice trembled when you said them. Just barely, and you’re not a crier, I know. I believed you, too, that it would be OK, but in that moment, you saw me. Accepting there was no quick answer here, no advice or platitude that could lift my heavy burden, you did the bravest and most beautiful thing a love can do: You sat down next to me, you put my hand in yours, and you shared what would normally just be my burden, my pain. You didn’t take the pain on, but you faced it with me. If only the world knew they didn’t need perfect words or answers to comfort and relieve us when we’re in the thick of pain. If only they knew that Love listens far more than it talks. A shoulder can mean more than a mouth. Love shares, it communes and confides. In joy and in pain. This is love. Our love. You helped carry the parts that I could not, and turned on its head what felt like momentary hell into saving grace. Just the memory of it strengthens me now.

This made me think of Nepo’s definition of Love. One I come to again and again, the most eloquent I’ve ever heard, and I often find myself reciting the words in my head: talking with friends, watching birds, kissing Monty. Somehow through your small action made with great braveness, your love materialized in a way I could not only feel inside with warm intensity, but could touch and see it, feel it in your hands. His definition for love is only this: Sudden Oneness. How perfect these two words capture what We shared that mangey morning. I warred with my same broken body, but I was also slipping into the outskirts of doubt and hopelessness; a place you know but helped lead me out of. His words so perfectly explain why when you love someone deeply and true, that when they cry you cry. When they’re happy you’re happy. Their joy is yours and vice versa. This is the beauty and brilliance of the oneness from love: lightening burdens and multiplying grateness. My tears continued but something about your unconditional nature made them begin to carry new truth in their waters. Hope, I think. Surrender. Reassurance.  But it was this small gesture that mattered most; allowing me as the mess I was, seeing and hearing me and not turning away or trying to quell it with empty phrases. I know how hard it must have been for you– the only other soul in that dark room, while mine laid strewn on the floor like a discarded garment. It’s not that you saved me, necessarily, but you saw me through the darkness. You stayed. So many fear that stillness of pain, enduring the murkiness of life when there aren’t easy answers to offer someone. You helped see me through it, bring my tired heart back into the light, ready to try once again. But first you let me die a little. Shed a skin I didn’t need anymore. Another testament to what brave love can do. Little deaths prevent big deaths. That was Nepo too.

It’s interesting, but when I recall this whole ‘event’ now, we seem to be alive inside a pocket of timelessness. There we are, the two of us, enduring what we did, frozen in an exchange that felt unearthly, and I can’t for the life of me feel or remember the passing of time. The moment is still alive. The lessons are wide awake, and they pour through so much of me: My fingers when I write. My soul when I’m discouraged. My intellect when my respect for the novelty of life drifts– I think of you and our moment and I know that there is meaning behind the pain, but it requires seeking. And luckily we don’t always have to do this alone. The Oneness that enveloped me, I think in fact may have been my first real glimpse of Forever. Or Eternity. Whatever the word for that otherwise incomprehensible concept is, for a fleeting moment I caught it, like a fast grab of a buzzing fly, followed by thick silence. In this excessively brief lapse in spacetime, I glimpsed the two of us–we were not just not apart, we were the same. We were one another. And the comfort was greater than a reunion you’d imagine would bring great joy. It comforted me. Humbled me. A powerful experience no doubt, but mostly mom I’m just plain grateful to know and learn from you this way. You’ve mastered a difficult and necessary art, and expressed and given it the way that you do, it’s something that will last far after you. And me. And my children too. Perhaps like Einsteins theory come to life one hundred years after the fact, that little ‘blip’ on a device recording an explosion a million years old, your love ripples will be felt long after you’ve gone. This is the miracle of true love. It’s so huge and yet it can be easy to miss. Like looking for mustard in the fridge tirelessly and finally coming upon it on the middle shelf in plain view, right in front of your eyes.

For me, this is incredible news! I half-knew already this was true. Losing and still knowing dad, our love somehow still growing, I knew it had to be real and not just the stuff of voodoo or fairytales. So I rest more assured now. One day you’ll die, and if life is good to us, it will be before me. But I don’t fear this occasion the way I once did. I know it will hard. The pain will be deep, as loss is not a one-way street. You lose more than a person, you miss a piece of who you were with that person. But like my clearly favorite Nepo says, Grief is a sign we loved them well. It’s in living this life, that when we give and receive love in its pure form like this, unconditionally, that it sustains and lives on. It works miracles! And it removes the sting and surprise of death, a thing we treat with pretty odd behavior in my opinion. But anyway, I can’t lie. I’ll be a mess. A sobbing heap on the floor. A shaken up bottle of coke. And where will I go? How will I recover? As I was taught of course–I’ll remember that moment of your bravery, to see your kid in pain once again and have to surrender; to be at peace with the mystery of these things. Just as you saw me through that, I learned that these moments actually do pass. That life does go on, the pain isn’t forever, and we wipe up our mess and keep going. I learned that because you lived through it with me, not because you sent a card with a bow that said “This too shall pass! Call if you need anything!” You are living love, in a beautiful form, and you are doing incredible work in the world because of it.

Perhaps by now it’s become apparent that I’m single. (Haha) But I can’t think of a more deserving Valentine, a bigger barer of gifts who never seeks out recognition or accolade for loving this well. You seem to perform the duties of love effortlessly, and I’m not only grateful to have you around and receive them, but I’m happy and feel lucky to learn what love is through you, how to give it and accept it from such a master as yourself. You’ve been through enough pain for 10 lifetimes, but I’ve never see you throw in the towel or give way to bitterness. Sure, you’re still a human being and a mother and you’ve made your mistakes. We all have. But you’ve never faltered on love and it seems to grow larger and more powerful in happy and hard times. Perhaps this is what the pain of experience does for us. I don’t know. I’m still learning. But watching your resilience and continued faith in life, in things bigger than you and me, in good things, in eternity, I know I’ll never stop seeking the answers. I’ll never stop trying to find the good, the value, the meaning in every kind of experience. Including the dark ones. Perhaps especially those. Thank you. For all you’ve done and continue to do. I don’t know how you’ve not collapsed yet of exhaustion, but maybe all that loving you do is an energizing force. It certainly is for me. Thank you. Keep going.

Oh yeah, Be Mine?

I love you.

Health, Happiness, Modern Romance

7caojdadi

P.S. I extend this letter to Marc, Doug, Nick, Amelie and their significant others for pitching in in all kinds of ways, helping carry me through the crap times, and loving me so well. You are all my angels. Thank you.

Adjusting the Perspective on Pain

What is it about Winter?

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider.  And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, those who appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here)  They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

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The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS. 

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Health, Happiness, Perspective

P.S. If you want to see one incredible example of taking tragedy and hardship and turning it into Greatness, watch Mayou Angelou share her life story on Master Class. It’s one of the most inspiring things I’ve seen, ever. http://cms.springboardplatform.com/previews/3405/video/937187/sfta001/

Getting Clean

I really, really need to bathe. Let’s start there.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you  have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that  when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think.  And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

Health, Happiness, Hygiene

The Grays

The Grays: As in, A Case of ‘The Grays’ is an amorphous cousin of The Blues, less concrete and more insidious. Where The Blues are a despondency with traceable roots, a break-up say, the source of The Grays is less clear, confusing the host and lengthening the distance he feels between himself and the world around him. It’s a removal of sorts. It doesn’t make everything feel bad as much as it makes everything feel the same–it removes ‘specialness’ casting all things in the same ordinary light. It becomes hard to see yourself clearly, to feel what direction you should go in. A person with The Grays can’t point to a particular occurrence and say Aha! This is the source of my sunless nature! All he can say is that a colorless film has covered his eyes, rendering all choices, all feelings, all consequences the same. It makes trying and not trying essentially the same–it dissolves meaning, in other words. Love, apathy. Good, bad. Going, staying. Same, same. Does he want an apple? Sure, he’ll take an apple. But it would be just the same if he didn’t take the apple. Eating it won’t bring him any satisfaction, and not eating it won’t make him wish that he did. Take it or leave it. Take anything or leave it. Same, same.
Correct, This is what I got when I googled the word Gray.
Correct, This is what I got when I googled the word Gray. You’re welcome.

I can’t say exactly what kicked me into the slump I have named The Grays. I suspect it had a little to do with the crash I’ve been in for a few weeks now and from which I am still not recovered. I know that often when my body gets overwhelmed for a long period of time, eventually ‘it’ seeps into my mind, my emotions, and I feel psychologically overwhelmed as well. I’ve been short of breath on my feet lately. Dizzy, heavy, and extremely weak, particularly when I try to stand or walk or move around. My legs feel like cemented blocks that are so heavy to pick up and put one in front of the other when I try to move, that I mostly haven’t. It’s been that way for weeks now, and staying sedentary too long would make anyone restless I’d guess. It gets old having to put off things until tomorrow that you already put off until today, over and over and over. Your surroundings start to grow stale, and wanting to change them but being too sick to get out of the house becomes a whole other challenge. Of course, this isn’t my first rodeo. I’ve been through crashes much longer and worse than this, and I’ve become pretty good at riding out sick times without giving in to despair. But that’s the thing– this isn’t really despair. It’s not heartbreak or grief or anger. It’s more like a hole where my feelings are supposed to be. A lack of feedback, a lack of identity, an inability to see myself in the world and where I fit in it. It’s this dimming effect on my surroundings and myself, blanketing the normally vibrant world in the same, colorless hue. Gross! This will not do.

Another entirely meaningless photo that came from googling gray.
Another entirely meaningless photo that came from googling gray.

The worst part about the Grays is not being able to easily or immediately pinpoint their cause, making it much more difficult to navigate and fix. It also usually means feeling bad about the fact that you feel bad, because you feel like there’s no real reason, or maybe no good reason, that would explain the source of your gloom. So you feel more bad. Have you ever cried and not really known why? It’s the worst! You start crying more because you’re like “Why am I even crying right now?!” Which results in a louder eruption of wailing, sometimes causing you to snort and sniffle, which might lead to a weird outburst of laughter, highlighting the absurdity of it all but then segueing back into loud sobs and a near certainty that you must be insane. It’s an emotional disco party! The funny thing is how absolutely lost I can feel in the midst of crying, buried and convinced there is no way out of the state I’m in. But almost immediately afterwards, in those moments of recovery where you’re sniffling with a tissue and taking those shaky, post-sob deep breaths, I always feel relief. I feel incredibly lighter and way more capable of finding resolve. There is always a rejuvenating sense of clarity–even if I’m still uncertain about the cause of my feelings. I can see myself again. I can see the other side.

One more just for funsies.
One more just for funsies.

I think sometimes the Grays emerge because I endure pain and I’m not always conscious that it hurts. Sometimes things make me sad unconsciously and I’m not so aware of them of them, or I just don’t understand why it’s painful, so I end up not giving it enough attention. I brush it off or just move on the next thing. But you can only do that for so long. There is always a breaking point. The pressure builds, the feelings need an outlet, and so there you are crying your eyes out for an hour after finding a dead mouse in a mouse trap. (True story)

But couldn’t it be said that I’m just a huge animal person and given that even dog food commercials make me cry it wouldn’t be unreasonable for me to cry at the sight of a dead mouse? Maybe. But I don’t think it’s that, completely. All things convey life and death in their own way, and they’re all reminders of the strange contract we had to sign. But I think it’s simpler than that and I’ve been sort of dense about it. I think the truer source is that sometimes, being sick for so long really just gets old some days, and I don’t feel strong enough to smile about it and say that I haven’t given up hope. (I haven’t, and I really never will.) But some days, maybe it’s OK to just admit that things are really hard right now, that life is getting you down, that you wish you could change the things you know you cannot change. That you’re blowing it with the Serenity Prayer! Perhaps the Grays are a result of not giving our inner selves and feelings enough examination. A voice. It’s not that we should complain and whine. It’s more about acknowledging what is true despite the vulnerability it will highlight. Maybe sometimes you just say it out loud and look it in the eye and admit hey, this hurts. This is hard. I need some help. I think voicing the feelings and allowing yourself to be sad without immediately trying to fix it, helps open up a space between you and the pain, and within that space is where you can start to understand and move through it. Awareness helps bring even the smallest amount of light to whatever hole you find yourself in, and that light illuminates what’s on the other side. Finally, you start to see a pathway out. But it means going through first.

The challenge is always to express and validate the feelings without succumbing to them, getting stuck in your story. The opposite of dismissing the pain is letting it take over, using things that have happened as a crutch for negativity or allowing them to defeat your hope and enthusiasm. This is what encourages the victim mentality, something I work consciously to stay away from because it seems unsettlingly easy to go there and stay. It takes hard work to locate and live in the middle of these two roads–and I’ve found myself lost many times, too far down one or the other. Saying it and feeling it too much, letting it dictate too much of me. Or convincing myself it’s not worth talking about, to deal with it alone, not asking for help when I actually need it. Finding my way to the middle is where I see things the best. I can see my life from a distance there, unencumbered by feelings about it. I can see my true self without my opinions distorting it. I can reconcile who I am with the kind of life I want to live. I think so often the source of my pain is that I’ve convinced myself I can’t do or achieve the things I want or am meant to because certain things, like being sick, are inhibiting me from achieving them.  But when I reflect deeper about this I think the opposite is true. I think what I am meant to do and be is actually born out of and possible at all because of these very unique conditions–the ones I didn’t choose. The ones that were not a part of the plan. Perhaps they are in fact what’s allowing my real purpose to unfold, and not hindering it at all. Maybe all of this comes down to a simple shift in perspective: stop seeing things as road blocks that are actually opportunities.

Of course, it’s always easier to write and say these things than it is to practice them. I know that words only have so much power, and just writing them down doesn’t make them any easier to live by.  But writing has always been a relentless reminder of what is true and good in my life.  It helps sort out the real from the meaningless. It seems to function as a mechanism of discernment for me; a sifter of stories from truth. Thomas Keating wrote that “Discernment is a process of letting go of what we are not.” Sometimes I find peace in sitting down to write, because it forces me  to come to terms with the truth without feeling defeated by it. Like Nepo says, The instant fish accept that they will never have arms, they grow fins. Sometimes it helps me remember that despite being sick, I can still become who I am meant to and do the things I find most important.

I find that opening myself to the vulnerability of what might be revealed, I usually unlock some truth when writing that I’ve forgotten along the way. It forces me to look past the petty things that sometimes I lean on too heavily on. It encourages me to examine the deeper meaning of things that on the surface can seem painful without a purpose or value. I am often surprised by what emerges when I sit down to write–it’s rarely what I intended or consciously planned to address. I know it sounds a little pie in the sky, but often the words don’t feel like they’re coming from me exactly. Sometimes I don’t even totally understand them. I feel more like a medium thru which other sources are using to reveal more important things than whatever crap I planned on. This is when I understand our passions being called “gifts.” The words are not mine– More than writing well, my job feels like listening well, and then very carefully relaying whatever’s coming through. It’s a sort of prayer, therapy, and mediation in one.

I think the connections and truth and awakening that writing provides might be what all our passions do for us (and the world) on a deeper level. Gardening, physics, furniture making, piano, whatever–they’re all devices that help us see the world more clearly and to feel distinctly our unique “spot” within it. They’re a way to figure ourselves into the cosmic equation and have it equal One. They are reminders of our humanness. All I know is that the longer I go without writing, the further I feel from myself, and the more distant I feel from the world. Lost this way, it becomes much harder to find that path to the perfect middle where I can myself and the world with the right set of eyes.

It might seem surprising since I tend to do it a lot, but I am always extremely cautious to write about the dark stuff. I always hesitate to post during the hard days, not out of fear really, but more because I know that what I give my attention to is extremely important both in my physical and mental health. I have to be careful about where I direct my focus. My hope and my experience is that writing things out helps to reveal things bigger than the pain. It brings a level of consciousness to wherever I am, and that helps see my reality better. My goal is always to find something good to take away even from the crappy times, because for some annoying reason, pain is extremely educational. But in order to grow from it means we cannot stop at the pain. That’s where we start–the reaching out, sharing, crying, and writing all provide a way to feel and understand it, and also to keep moving forward. I’ve basically done all of those things in the hours I’ve spent writing this. So thank you for letting me go on for so long. Whoever you are. Because you know what? I don’t feel so buried by these Grays anymore. I haven’t succumbed to stagnancy and I feel a space between the pain and me. I feel more connected to the world, and I’m starting to see it in color again.

Health, Happiness, Away from The Grays