How To Make It Matter

Today I was thinking about these petty things I struggle with. They’re a joke.

I’m in the midst of another virtual game of jenga with my trashcan. I stuff it as much as it can hold and then some, and then some. I have to stomp it down with my foot sometimes. I stack cups and cardboard things on top over and over until small towers emerge and a fragile city of trash balances on top. I avoid the alternative, which is to just take out the stupid trash, stupid. It’s a small walk–probably 45 seconds all in all. It’s funny how devastatingly huge the task becomes in my mind. I spend more time arranging the trash inside than just taking it out. 

Netflix has become a problem and the reason is very simple: I would always rather pay a dollar than have to go somewhere. Thus, I end up buying virtually every movie that was only supposed to be a buck. Also, I’ve made a few questionable decisions in my movie selections. This is because when someone gets in line behind me I kind of unravel. I begin to sweat and all the movie titles start to blur together. I panic and get Coneheads and naturally never return it. Now I own Coneheads.

 

I won’t get into correspondence and sending letters in the mail, but I definitely have a couple of letters in stamped envelopes over a year old that have never made it to the mailbox. Disgraceful. Anyway, I was considering these petty struggles which are just a few among many. Life is full of small and mediocre “things to do” that I often dread or put off until I can’t anymore. I realize that the only reasons these tasks are anything more than tasks is that my mind has labeled them bad, annoying, a pain in the ass. When really they are just a few things in a string of a million things we will all do and then cross off our list. They’re all the same, it’s only our attitude that redefines them. A Zen Master described the essence of Zen as Doing one thing at a time. Tolle explains this as “Being total in what you do, to give it your complete attention. This is surrendered action- empowered action.” So I’m working on what I let take up space in my mind, on being conscious before I complain about something that is necessary and also just not that bad–Especially when I pay attention to the world beyond me, where actual struggles exist.

Like many people, I’ve been watching the events unfold in countries that feel very far off to me. I realize my life is somewhat sheltered here, and when I confront the news I feel a distant hopelessness. I remember hearing about the 300 kidnapped Nigerian school girls taken in the night. I felt angry and sad and followed the story for a while. But exposure to the story faded, and it seems my regard for it did too. A few months later, 219 of the girls are still missing, with low probability for their return. I haven’t thought about them in a while. Now there are other tragedies unfolding. I see the destabilizing of Ukraine at the hand of Pootie Poots (what my brother calls Putin) and the rising emergence and activity of terrorist groups over there. I feel awful watching it. But also I feel removed from it. I watch the news then eat spaghetti. Something feels off about that. In a few months I’ll see new tragedies, and maybe Ukraine like the Nigerian girls will fade. Or the world will end. Either way, I wonder what someone like me and my small life can do for the darkness unfolding. How can I bring any sort of light there? Especially when I’m trying to carve out time to return a Netflix movie here? That is a joke.

I’m reminded of a continual theme in Tolle’s teachings, which is that separateness is an illusion. We are all made up of the same billion-year-old stardust. We operate under the “Same in-dwelling consciousness.” So while our bodies and geography separate us, our lives unfold to one pulse. I imagine this is why we feel concern when we see a stranger cry, or why we’re happy for the good fortune of another. Somewhere in the depth of our unconsciousness, we’re feeling it too. Otherwise, why would we care? Technically it’s just strangers, and their pain or death won’t interfere with our afternoon in any way. But these teachings that connect the human spirit have always resonated with me. Many of the “dark” things I’ve witnessed in my own life seem to stem from people not recognizing themselves in another. I’ve done this plenty. When witnessing the sufferings and tragedies over there, first I must remind myself that their sufferings are mine too. Whether their effects are immediate or obvious doesn’t change their imprint on us.

That being said, I am not a soldier. I can’t help fight the good fight. Today I’m too weak to take a shower for instance, so the military is out. I’m not a war correspondent or a politician who can influence change. I am who I am, having a small sickly experience here in Louisiana with my dog. But I refuse to think I’m useless in all this–mostly because that take on life truly lacks creativity. My life is different from those I witness, here and there. But I think the way to have any positive influence on the world is through growing my own consciousness. It sounds selfish but at the root it is not. It means being honest with myself and making good of the strengths I do have; they exist for a reason. It means loving more, showing more compassion, opening up more, writing more, seeking truth more. Tolle’s teaching along with Joseph Campbell’s and a slew of others is that if my life can become more conscious, it adds to the collective consciousness of the world. That is how we can make our experience matter. Because I have to remember that my experience is theirs too, just the same. So if I seek and obtain light in my life, it can spread far beyond me. I continue to think and pray about the darkness in the world and how I can help it. Most answers say to begin with inner-me. So that is the start. And it’s aligned with something I’ve felt for a while– that there is no life too small to matter.

The same stream of life
that runs through the world
runs through my veins

-Tagore

Health, Happiness, Coneheads

Fall Yall.

They say the only thing constant is change itself. And when seasons change, particularly Summer into Fall, I always seem to feel a change on the inside as I watch the atmosphere play out it’s own changes. As if my circadian rhythms, my organs, my soul knows that things are going to change. I’ve always liked the feeling. The transition from Summer into Fall and Fall into Winter has always been the happiest time for me. That first gust of cold air. Pulling out old sweaters and cardigans. Cuddling in close to whoever you’re with. (I’m talking to you mom!) And there’s that slight reminder that the Holiday’s aren’t so far away and if you’re like me and ridiculously elated by Christmas, then it’s a good feeling to pick up on. I’d say if I could choose a season to fall in love, as if you could ever choose these things, I’d pick Fall. It also seems most likely to happen then in my eyes. A girl can dream. I say that a lot.

New Orleans weather is really weird. And by weird I mostly mean crappy. Our summers are long. Just too long really. And unrelentingly hot and humid. It takes your breath sometimes. Every time I fly into Louis Armstrong and exit baggage claim, my lungs get coated with a Southern sheet of bayou film and I have to remind myself how to breathe. It’s all part of the fun of calling Nola home. And I mean that. Our Fall is very short, much like the Spring. And Winter is fickle. A cold day comes. Everyone dresses as if the blizzard of the century is approaching and the cold due to the moisture in our air is penetrating and bitter. And then two days later it’s 70’s degrees and uncomfortably wet. If I could present our seasons through words arrangements it’s like this:

 

S   U   M   M   E   R R R R Fall W I N TER Spring S U M M E RRRRR

 

So maybe the climate isn’t our major selling point, but I also don’t hate it. Cold days are such a novelty here, and the excitement brought on by temperatures allowing boots and a chunky sweater is contagious. Nothing gets a Southern girl excited like Sweater Weather. Just say those two words to one and watch the magic unfold. It’s true we don’t have four equal and distinct seasons; we have summer with a side of spring or winter sometimes. But we still get a taste of everything it could be much worse. We also get extreme thunderstorms, and I truly love rain. And not just the grey drizzly days. I’m talking intense thunder and lights flickering and those storm clouds that somehow turn up in shades in green. I love those days. Monty prefers to spend thunderstorm time in the bathtub, and I say whatever floats your boat homie.

Anyway I’ve been cleaning the leaves out of the pool with a net as Monty swims despite the water temperature having dropped majorly. To me, this is the quintessential image of Fall at home. Brown leaves floating in an empty pool. It’s perfect. I drag the net through the water and I get these bursts–an urge, an inspiration–I’m not sure exactly what it is. But I think maybe if I were a tree, I’d feel like shedding my leaves. And then suddenly, for one brief clear moment, nature makes sense. I continue to sweep the pool for miscellaneous debris including a Gatorade water bottle that monty dropped in and has sunk to the bottom. Since I don’t have leaves to shed, I went with the next best thing. My hair.

Pardon my selfie skillz.
Pardon my selfie skillz.

I chopped it. And got blonde added to it too. Mostly because, I felt that thing, that very internal tinge of electricity. The thing I think trees might feel. And I had to do something with it. I didn’t even care so much about the outcome once I made my decision. I just had to go for it. And leaves grow back in the spring–my hair grows fast. I’m 29 and I’ve never colored it. I’ve had long hair for so long that it was starting to look sad to me–sick even. It was reminding me of being sick. Suddenly I wanted the weight gone. Something lighter. Something new. As the hairdresser snipped my first 6 inches off, I remember my ex-boyfriend telling me he didn’t like my hair short. I shut my eyes and listen to it all come off. It felt good. It felt great. It rejuvenated me somehow. No more sick hair. Sick thoughts. Time to be happy and try new things. Time to act on positive impulses. Time to finish things I started and stick to things that I know are important. The leaves have fallen and my hair has lightened. (See what I did there?) I feel good about things. Good things are in the works. I encourage yall to make a change too. Do it for me. Do it for you. For Fall. Why not?

Report back. And rock on.

 

Health, Happiness, Fall.

10 Campaign Slogans Up For Grabs in 2014

1. Rape is bad and I am against it and that is my opinion on rape.

2. I’ve never sent a dick pic in my life. Ever!

nodickpics!

3. Let’s Go Green in 2014!

You
You May Lighten Your Stance On Pot Once I Tax the Shit Out of It and Save Our Economy in About 3 Days Time.

4. Remember Books? I’M BRINGING BOOKS BACK!

5. I Love Black People!

6. Let ALL the Gays Marry Already!

Because Every American Should Have the Right to Be Miserable!
Because Every American Deserves the Right to Be Miserable If They So Choose.

7. When I Smoked In College, I Inhaled. AND I LIKED IT.

8. OUT With ObamaCare and IN With *AWESOMECARE!

9. A Gun In Every Closet!

Kill Baby Kill!
Kill Baby Kill!

10. I Believe In An America WITHOUT Yellow Starbursts. WE DESERVE BETTER!

Any interested politicians, shoot me an email. There’s no way these could fail! 

Love and Politics,

Mary

**Truthfully they’re the same thing, but it sounds a lot better doesn’t it?

Love and Let Live.

I’ve neglected my writing routine for a solid few weeks and I attribute that solely to distraction. One particular thing. A person. It’s a person.

That person is Rob Lowe. Just kidding, it’s not Rob Lowe. But that’d be a funny anecdote wouldn’t it.

Unfortunately or fortunately, I have to be alone to write. (Duh) Very alone. And by that I don’t mean lonely, although it can get that way. But even someone in the next room, doing something else, watching some movie, talking on the phone–it all feels exponentially more important that I be a part of their experience in the other room, even if it is just watching Robinhood Men In Tights which for the record, I’ve seen. But someone being over there and me being over here smells something like missing out, and as a full-fledged youngest child, I’ve lived 29 years trying to avoid just that. I think all youngest children do.

I’ve been spending time with my unofficially official ex-boyfriend/boyfriend/best friend/comrade/casual dating kissing partner. And we spoon too. It’s all very simple. We’ve known each other ten years and been through a lot including tumultuous breakups and taking turns carrying one another. We’ve been through things that either harden you or strengthen you and somehow rounded out in the middle. It seems to me we’re on the same learning curve. It’s the only way I can explain how after so many ups and downs we still seem to find one another, each wiser from their mistakes, and seeing in each other something that has always been there. Of course maybe all this is way too analytical. Maybe simply he was my first love and I was his and some part of that just never goes away. Regardless, he went away this morning on an adventure. The kind people talk about but rarely actually embark on.

photo-79
Life in a Bag.

He packed his life in a green hiking backpack and is starting out in Nicaragua– and that is about as far as his plans go. One of his plans involves staying and working at a hostel near Leon, where he will lead expeditions to the top of a volcano and then get down by surfing down it. I remember I was eating yogurt in my pajamas, exhausted after doing something undoubtedly small and stupid, when he told me that plan. I laughed a little as I envisioned his day versus mine while taking another bite. “Our lives are so different.”

In that way he’s kind of my hero. For one thing, he’s been blessed with a body that works and he is using it to his advantage. Pushing it, training it, challenging it and paying very little. He is strong and coordinated and a fast learner. This is of course something I’ve been unable to keep up with him on. And that’s OK. I’m learning to be content from the passenger side. I’ve actually come to enjoy and take pleasure out of watching people do what they want and go on adventures and seek what makes them happy. You don’t need to be strong to do that. At a fundamental and simple level, this is where human beings can be very wonderful additions in each others lives. If we merely nudge our friends in the direction of happiness, we’ve at least done something.

It’s funny such a thrill-seeking adventurous soul would ever have any attraction to the sick bag of bones called me. I guess I wasn’t always this sick, but still, life with a chronically ill person can be slow-paced and sedentary and a downright pain in the ass. But I guess all of life isn’t a thrill. At the end of the day whether you surfed down a volcano or not, you need a good snuggle partner and I am a pretty DANK SPOONER YALL.

hehe
hehe

He doesn’t know how long he’ll be gone. At least six months, or until the money runs out. We made no real plan of contact or correspondence. I know that this is an adventure he’s going on truly with himself, and he should be free to explore everything along his path. No ties or obligations to the homeland. Clean slate. But on the way to the airport I felt myself squeezing his hand tighter than normal. I guess that’s to be expected when facing the unknown.

Then I had that all too-human experience of returning to a house after an airport-goodbye with that hush all over and the remnants of someone in all the rooms. It’s all a little quieter and things feel hollowed out; you know it’s the start of something new whether you wanted it or not. At the same time, my own adventure is beginning here. Now that I have my solitude back, I have to get to writing. And reading. And arts and crafts And following my own glimpses of joy. It may not lead me to volcano surfing but it could get me somewhere close. Like healing yoga or gluten-free breakfast cookies!

Anyway I never much write about my love life, or lack thereof, but it all feels sticky in my brain and I am hoping that by releasing this feeling I can continue on with other endeavors. I am happy for my friend who is following his bliss– and Gator if you’re reading, be careful out there! If you died out there I’d be really annoyed. I know I have to let go and I need not to lose myself in someone else’s tales. For a while there I was getting so caught up in his life I was forgetting to tend to my own. Marianne Williamson says most of our problems stem from forgetting who we are, and that rings so true to me now. Time to move onward. Time to live and let live.

Health, Happiness, Forward.

A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.

I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)

I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.

I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS.  For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) and Hay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.

It takes money honey.

I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.

I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.

This isn’t just about me or just about other sick people with this illness.  Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day.  I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.

I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.

I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.

Health, Happiness, Change.