Here’s a poem I really like. It’s by Brenda Shaughness.
I Have a Time Machine
But unfortunately it can only travel into the future
at a rate of one second per second,
which seems slow to the physicists and to the grant
committees and even to me.
But I manage to get there, time after time, to the next
moment and to the next.
Thing is, I can’t turn it off. I keep zipping ahead—
well, not zipping—And if I try
to get out of this time machine, open the latch,
I’ll fall into space, unconscious,
then desiccated! And I’m pretty sure I’m afraid of that.
So I stay inside.
There’s a window, though. It shows the past.
It’s like a television or fish tank
but it’s never live, it’s always over. The fish swim
in backward circles.
Sometimes it’s like a rearview mirror, another chance
to see what I’m leaving behind,
and sometimes like blackout, all that time
Myself age eight, whole head burnt with embarrassment
at having lost a library book.
Myself lurking in a candled corner expecting
to be found charming.
Me holding a rose though I want to put it down
so I can smoke.
Me exploding at my mother who explodes at me
because the explosion
of some dark star all the way back struck hard
at mother’s mother’s mother.
I turn away from the window, anticipating a blow.
I thought I’d find myself
an old woman by now, travelling so light in time.
But I haven’t gotten far at all.
Strange not to be able to pick up the pace as I’d like;
the past is so horribly fast.
Pretty great no? It’s funny how some poems feel like they were written just for us, as if the author knew exactly where we’d find it and what it would do to us, hitting us in the gut in a coffee shop! Or heart. Our insides somewhere. I love this part of poetry. How fast it is. How in just a minute or two you can cosmically connect with a total stranger, dead or alive, and feel more seen or heard than you have by actual people. That’s powerful stuff!
I’ve recently been reading Anne Sexton–her history and her poems–and both are intense and curious and heartbreaking, but deeply resonant and I’m eager to read more. I plan to order someones cheap, used copy off of Amazon, and hopefully I’ll find parts that are underlined or circled with little notes in the margin. This is one of my favorite perks of reading (used) tangible books as opposed to electronic, kindle types; the human mark on the pages. They’re like little visceral clues of other life, but exceptionally personal. More confidential than say, finding someones grocery list, although there are treasures to find in that too. Maybe I am just an alien from another planet seeking signs of life and getting way too caught up in casual life leftovers. But somehow I feel less alone when I see a persons scribbles to the side of a page. Their unique handwriting next to that flat text against the page– It heightens the effects of the words. It brings the whole thing to life. It always makes me think that someone else sat alone somewhere, reading these same words and they were compelled enough to write themselves. Maybe it was there way of writing back, hoping someone somewhere along the way would read what they wrote and feel something. I don’t know, but there’s just something…nice, about that. Anyway, I think I will start with The Awful Rowing Towards God. Or maybe Live or Die and go from there. Did you know that Anne Sexton had two sisters, and one was named Elizabeth Jane, and the other one was named Blanche Dingley? BLANCHE DINGLEY?! I wonder if Elizabeth Jane gave Dingley shit about that.
I’m completely lost in Walker Percy’s The Moviegoer. I began reading it Sunday and now I find myself attempting to read only small bits at a time because I’m already dreading it being over. It’s such a good read. The protagonist Jack really resonates with me but also Percy is such a creative and dead-on writer of things large and small. I admit reading his words make me feel like I could never write anything of worth if I tried for it my entire life. But on other pages his complex ideas play out so simply, his writing so accessible that it gives the assuring impression that anyone could do it. The story takes place in New Orleans mostly, among other Louisiana Parishes and the Mississippi coast. I love stories set here, not for reasons of pride but for how perfectly the landscape plays into the story, picking up where plot leaves off. Something huge would inevitably be lost were it to be told from Ohio…or Michigan. All parts of it from the dress, to the houses, to the unnerving racial tension are all intrinsically Southern, and you find yourself loving it whether you hate it or not. Also of note, Percy lived in Covington. He used to drive the bridge to New Orleans. I guess it’s encouraging to know something so inspiring came out of this little town that for so long I hated. Speaking of the bridge..
I had another moment of coherence. This time around mile marker 11. Monty and I were driving home once again, New Orleans to the Northshore, last Monday evening. It was a pretty nondescript Monday, cloudless with little traffic. But my thoughts were floating through me with the rhythm of the bumps per usual. Then I did this thing which I do a lot. A small amount of congested traffic formed from some kind of road repair, and as I slowed my car to a near-halt, I felt myself bracing for impact. Not from me but from a car behind. (No car in particular, I do this no matter who’s behind me) Then I imagined the loud crashing sound it would make and my airbags inflating. Then the last part which is usually the most unnerving for me, I saw my car crashing through the concrete barrier to my right, and my feeble Toyota corolla with Monty and me inside it, falling slow motion into the water. Down, down we’d go.
And usually the thought doesn’t end with a rescue. Usually it ends with me shuttering at the idea of the lights going out on my life so fast, and then me being jerked back to reality, convincing myself someway that death is nothing to think about. As though I’ll never die! But last Monday was different. I had the thought, I braced for impact, I saw the vision of my falling car. And then out of nowhere…tranquility. My mind felt placid. I may have even smiled. I thought how weightless that moment must be when you finally let go. The grand transition. Finally releasing something you’ve held so tightly onto, whether it was good to you or not. The surrender. The relief! It finally occurred to me that only being lost so deeply in the world garners that sort of fear about death. If we could interview those who have “passed on” (as I hear older religious folk say) I think they’d say it wasn’t that scary. Nothing compared to the rest of their life on earth scared to death imagining it! I’d love to get just one interview. It’s like I know all these dead people and none of them will give me the dirt.
Anyway, I can’t explain how reassuring that moment was on the bridge. I remember in California over a year ago, I was sicker than I’d ever been to the point I actually thought I might be dying. And I hated the idea. I was so overwhelmed by that possibility that often it brought me to tears and I’d have to excuse myself and physically catch my breath. In theory it should have been almost a relief to think about–an end to suffering. But I didn’t want to die. And I certainly didn’t want my last days on earth to be like the ones I was having there. Closed up indoors, lifeless, feeling very alone. It’s just interesting to me that now that I’ve really been living these last few months, and dare I say it, even–happy–my fear of death has lessened. I’ve enjoyed the park and the pool with Monty in the sun. I’ve gone to dinner parties. I’ve said yes to things that in my sick past were a big fat no. I’ve spent quality time with people I love, not doing a whole lot of anything at all but talking about life and people and laughing really, really hard. And there on the bridge, for maybe no more than a second, I didn’t fear death. I felt curious and interested. But I wasn’t tense bracing for impact. I was smiling at how much fun I’ve been having and how at ease with life I feel. You’d think that would make the idea of death more unnerving than ever, because it means an end to happy times. But the opposite occurred. From my perspective over the water, death was just another thing that happens. Maybe after all, it’s not that big a deal? Hah. That moment was the first I’ve had that it didn’t feel like this overwhelming weight baring that comes with the knowledge that one day we’re all going to die. And even though my normal angst about it has at least half returned, that moment has really stuck and it feels readily accessible still. There was something very casual about it, which made me trust it even more. Sometimes I find myself looking for grand answers, spectacles, formal explanations of life and existence..and this was not really that. It was a simple and tranquil instant of acceptance, and those are the moments that persist. I pet Monty’s velvet ears, turned up the music and into the distance we drove. That indistinct Monday turned out to be quite the evening as it were.
Besides my newfound excitement for death! (jk)… the Day Lily’s are back in bloom. I looked at all the colors sprouting up yesterday, noting that by nature’s calendar I’ve officially been in this house for one year. I remember writing about these flowers last year, excited for how life in the pool house might unfold. Funny I hardly remember what’s happened in the time since then. In some way the fact that nothing terrible stands out makes it safe to say it’s been a pretty decent year. I only know that being given the gift of “relative health” the last few months has truly been remarkable for me. I’ve been enjoying the hell out of so many moments– of friends and boys and late nights immensely–and I feel gratefulness overflowing in me. I don’t remember the last time I was bored. I’ve read and written and played Taylor Swift on my guitar ridiculously loud. When I’m sick I rest. When I have energy I go. But most notably is this gratitude and the awareness of this gratitude. It occurred to me recently that this is the opposite of boredom. When I feel gratitude I feel like I’m living with my eyes open. I’m often noticing things that were already there that I’d simply skipped over before. I like this feeling of being in touch with my aliveness, seeing the realm of possibility beyond personal limits, recognizing the awe-inspiring nature of everything alive. Maybe it’s why I love saving the frogs from the pool, or why I don’t get rid of the spider living in the corner of my bathroom. I don’t think you can be in tune to these truths and be also bored. Boredom uses a narrow vision, it sees life as something to happen for us and not from us. Even yesterday, which turned out to be a crash day spent in bed, I lost myself in the enjoyment of a book, completely grateful for the existence of novels and good authors. Then completely grateful for a nice house to read them in. I never got out of my pajamas or brushed my teeth. I didn’t exactly contribute to the world. And all the same, it was really a wonderful day. I know there was a recent time in my life when I wouldn’t have thought that to be so.
Everything is weird. I’m still healthy. And that makes things weird. And also pretty great.
I’m enjoying the three-dimensionality of things. The multitudes of personalities I’m confronting. The sounds that one simply doesn’t here in a bed in Southern Louisiana. Everything is distinctly colorful. Of course the onslaught of spring and the prolific products of hers help. It’s a been a long time since my health has maintained in this way. I’m walking a thin internal line, trying not to delve too hard into the why but not altogether ignoring the possibility of its fleeting nature, just like the season. I’m simultaneously happy at this new disposition and also keeping a dark fear at bay. It could all end quickly– a few things. And being entirely reckless hasn’t served me in the past. So I’m keeping these things in mind of course. But trying not to fall down completely into the rabbit hole where incessant introspective thoughts about it all could trap you just as easy as any sickness could.
For the most part, it’s been fucking great. Sorry. F word only every now and then. But it really is nice being able to stand and walk without the typical interruptions and be social and see comedy and do what other young people are doing. I can’t deny I am simply just enjoying the hell out of all of it. Things feel carefree and almost weightless. Life outside of a window at my house, a window on my phone, is really pretty great. When I get worried about the future or have fear of losing it, my mom tells me the same thing; detach from the outcome. And it’s so, so true.
I’m thinking of so many things these days. I’m still trying to put it together. What purpose will I serve with this newfound health? What did I fulfill in sickness? How to matter and find meaning in all of it– the big stuff and the little stuff and the small bits in-between. I’ve been thinking in questions today. I’m going to write them out with my best shot at answers because it’s just the current of my thoughts lately and I’m not going to swim upstream.
What do you contribute the newfound health to?
It could be the physical therapy for my neck which has lessened that pain load considerably. Could be the prescription switch to Trazadone that has me actually sleeping through the night–never mind the night sweats. Another prescription switch from Neurontin to Lyrica seems to help with pain management in general and maybe the increase in energy. Also it’s Spring and I swear to God I’m always at least a little improved in nice weather and my migraines are less frequent. Also divine intervention. I don’t know. Maybe a little of it all.
What happened to sewing, weren’t you into sewing for a while?
Yeah, I was. And I got really excited about some sewing projects. I sat at the Singer Simple 3116 for hours and taught myself the ins and outs of it. I got carried away and excited with ideas. Then I began, and I jammed the bobbin. THAT DAMN BOBBIN. I took the bobbin apart, unjammed it, and put it back together. And now the bobbin is failing me hardcore. I need bobbin help. Anyone? Still, I’d like to get back to some sewing projects. I find it relaxing and I like learning skills that seem to be fading from my generation.
What’s Monty up to?
You know, same ol…
Let’s talk about tea now.
Drinking this new acai/blueberry/pomegranate mix on the reg. It’s really good. Has there yet been a decision on the universal pronunciation of acai berry? I hear a mix around town. Let a sister know.
How’s the writing going?
I find a lot of reasons not to, but when I sit down and do it I like what comes out. Most of it’s been happening pen-to-page so I’ve been using up my notebooks, which is good because I have a lot. I’ve been on the lookout for a typewriter, but maybe that’s just another fantasy in the works. This thought that some instrument will encourage more writing instead of the truth which is that real writing just requires sitting down and doing that shit. I’m working on that.
Anything else while you’re out here in Neverland typing to yourself?
Yeah I’m reading like 4 books right now and 1 book of poetry. I don’t think this is how optimal reading was designed, but I find my head a little scattered lately. I’m almost finished with The Rosie Project–really funny, really good. Trying to push through Dance Dance Dance (slower than expected). One Dead in Attic is an easy quick read but dismal of course, you know, post-Katrina stuff. The Four Agreements is sometimes rudimentary in comparison to Tolle and Zukav and Nepo, but almost identical in the message. It’s got good stuff. New American Poetry which is proving what I feared–that I don’t really understand how to read poetry. Do you keep reading until you get it? I guess that’s all in the way of books.
And everything else.
For now the goal is to truly enjoy this time of health, appreciating every second where taking a deep breath is easy and sitting isn’t my only option. I’ve held the door for people these last few weeks. I held the door! These very normal things…they’re feeling very good. Clearly I’ve had a lot of doors held for me in my small life, and it feels nice to return the favor.
One last thing:
I saw The Grand Budapest Hotel. I really liked it. Monsieur Gustave..he sticks with you. I’m still stuck on Moonrise Kingdom though. See them both. Make a whole night of it.
Going to the bookstore is one of my favorite mid-day activities. I’ve been under the weather lately so it was nice to get out and see real life. I felt like Bell from Beauty and the Beast in that library singing. Sadly there’s no ladders at Barnes and Noble but it was enjoyable nonetheless. I left with my next TEN books to submerge in for however long it takes. I’m watching ice-skating and that Olympic music they play when they cut to the commercials is so inspiring it makes me feel like I could become the president. Which is even more reason to read. So here’s the list! Cue the music.
1. Where’d You Go, Bernadette? -Maria Semple
I remember picking this book up and flipping through it at my last bookstore outing and for some reason didn’t end up buying it. When I spotted those big black fly-type eyes on the cover I grabbed it immediately before I could back out. Shameful fact: I really love this books cover and that played a big part. I know the cardinal rule, but it’s also sustained positive reviews for a very long while, and Jonathan Franzen loved it and so in the pile it went. Mostly though, I loved the cover.
2. Dance Dance Dance -Haruki Murakami
So the Wind-Up Bird Chronicles was one of my favorite and most adventurous reads last year and discovering the many other “Masterpiece Novels” he’s authored I was way excited to dive into another one. I like that his books keep your imagination and consciousness running. I’ve got high hopes. I know it will be good.
3. Why Sh*t Happens (The Science of a Really Bad Day) -Peter J Bentley
I liked the title. And the subtitle. Also it was on the bargain rack. It’s probably stupid.
4.Oneness With All Life -Eckhart Tolle
This is a bite-sized version of A New Earth, which I’ve read and re-read and loved. But I forget the teachings often. I go back and reread passages that I’ve felt I’ve never read before. I think it’s one of those that stay on your bed stand for life and by the time you die the entire book is highlighted. Anyway this smaller dosed version is made of “inspirational selections” to be read maybe one or two pages per day and to reflect on. Think of it more as a daily meditation. Since it’s so easy to forget the big stuff, I like to have something in the morning or before sleep that gets my head right. It’ll go on the nightstand.
5. The Illuminaries -Eleanor Catton
Do you ever feel like the Universe is talking to you? Well this book came up three times in three days and I took it as a sign that I gotta get in on it. It’s also a gargantuan read (over 800 pages) so it will be my friend for a long time. Or enemy.
6. Proof of Heaven -Mary Curran Hackett
I’m unfamiliar with this author but crudely, I fell for the optimism implied in the title. Even though it’s a novel among hundreds of actual accounts of Heaven, the back summary drew me in as well as the first two pages and I was like “Cool, I’m IN!” and now that I’m reflecting on that I really hope I didn’t say it out loud because that happens sometimes. Anyway, this is not to be confused with Proof of Heaventhe memoir by a neurologist who died, went to heaven, and returned. I’ve heard really good things and watched his account in interviews. Pretty amazing stuff. That read is next in this Heavenly genre. (Mom, you said you have it. Give it to me!) But this one was on the bargain rack. Girls gotta eat.
7. Born Under a Lucky Moon -Dana Precious
Complete blind buy. Liked the cover. Like the summary. And the price. It’s Olympic Season so I’m really going for things.
8. The Almost Moon -Alice Sebold
Moons are so #trendy! I hadn’t heard of this one either but it was a #1 National Bestseller and the author also wrote The Lovely Bones which I read long ago and really loved. And it was on the bargain rack. OK you know what? I’ll just tell you when it wasn’t.
9. The Four Agreements -Don Miguel Ruiz
I have been hearing about this book for a long time now. It was published in 1997 but stayed on The New York Times Bestseller list for 7 years and sold 4 million copies. The premise of the book is simple but beautiful– in lieu of agreements and rigid beliefs we try to adhere to but often end up limiting our happiness, Ruiz suggests a personal code of conduct he calls The Four Agreements. Wanna hear em? Sure you do.
Be Impeccable With Your Word.
Don’t Take Anything Personally.
Don’t Make Assumptions.
Always Do Your Best.
I don’t really love “gimmicks” for life type of books, but this one seems much deeper and substantial while sustaining its worth for years. Furthermore, it just sounds like a refreshing and happy way to live. Can you imagine never taking anything personally? Sounds awesome. I want to know more, so it’s going on the night stand. And it was FULL PRICE!
10. The Leftovers -Tom Perrotta
OK yes it was on the bargain rack again and no I’ve never heard of it or the author. But it’s a post-apocalyptic thriller type of novel which I don’t read often (like never) and I wanted to mix it up. I threw it in the bag because while the subject matter is dark, it’s also wrough with dark humor (my other best friend). It follows the survivors in the wake of the “Sudden Departure” as they try to go on with life keeping normalcy in mind but, you know, people are missing and the world is all messy. In my small confined life, it felt good to take a risk.
I’ve spent most of this last week in bed, or in and out of sleep on respective furniture that I turn into a bed. But mostly in bed. During crash periods I have a lot of time to sit around and think and do nothing. And while “doing nothing” sounds a little worthless and at least a little depressing, I’ve gotten pretty good at feeling bad. That is, I’ve found ways not to succumb to complete boredom while spending my days and nights in the supine position. But I have to be decisive and proactive when it comes to mental stimulation. It’s easy to do nothing and think nothing and waste away hours watching cats on the internet. I’ve done a lot of that too.
Currently I’m reading “Further Away”– a book of essays by author Jonathan Franzen. It was given to me by my brother Nick, who wrote on the note inside to add it to our virtual book club. Nick and I don’t live in the same city and considering how poorly I keep in social contact even with people I care most about, we don’t talk so often. But we have similar taste in things and it’s true that I trust any literature from him will be enjoyable. Like the others this one doesn’t disappoint. I gave him the book “Why Does the Universe Exist?” and said it might be a good starter for the club. Nick is a full-time professor of architecture with multiple side projects and is a husband and father. I’ll be impressed if he has the time to finish it. I have nothing but time but in retrospect, I can think of at least three books in the last year I’ve simply left unfinished with less than 100 pages left. For whatever reason– It might be a commitment problem on my end. Because oddly enough I enjoyed the books I left undone. (Except 50 Shades of Grey. I just couldn’t do that one, even from a humorous standpoint. It was just so bad.) At any rate, I like that we’re trying. I know I need to read more and it is truly one thing, a gift even, that I can do whether or not I’m sick. I could read for hours and feel somehow refreshed at the end. TV and the internet are bottomless. I could be dead tired but watch more, click more, disengage more. It’s far too easy to fall in and at the end I never feel great. I’m like where am I? What time is it? How long have I been watching Tosh.0? I don’t know how many times I’ve watched the Kardashians and rolled my eyes thinking to myself that it’s the stupidest show on TV. And yet when it shows up on the guide, I almost unconsciously go straight to the channel. It’s like mindless auto-pilot in the way of my brain. I think it’s their hair that keeps me coming back. It’s just so pretty.
Speaking of the Kardashians, did you see the photo of baby North West? I think she’s cute. Wait, why do I know what their baby looks like? Because if you watched TV or were on the internet yesterday, it was everywhere. As well as mass hysteria about Ben Affleck becoming Batman. Maybe that says something about the places where I get information. But it also says something about the things that gain momentum and attention and a dialogue. Meanwhile, my state is sinking.I don’t totally understand the nature of a sinkhole. Except that I’m pretty sure it’s unnatural. And it’s a problem when entire trees are being swallowed whole. Something about salt domes? But why take the more effort-requiring time to find out when I could just look at a tumblr that makes fun of what Kanye’s baby looks like? It’s so easy to just lay back and look at what’s easy to look at and make fun of what’s easy to make fun of. But it’s not very wise for someone like me to do too much of that. I constantly have to remind myself to be careful with how I spend my time. I truly have a lot of it.
Anyway, maybe by the next post I’ll be much more knowledgeable about sinkholes. Or I’ll have a lot more photos of baby Nori. Anyway, I’ll continue my quest to be at least a half-way informed citizen and spend my horizontal time wisely. I love being outside but on weeks like this one, I’ve mostly been inside which can be wearing too. But don’t get me wrong, I’ll still watch internet cat videos because come on, that stuff is funny. And laughter is important. And if we spent all our days indulging in bad news we could succumb to despondency and boredom just as much as if we watched TV and internet videos nonstop. It’s all a balance and I’m always in search of the middle. So far, 29 has been just fine.
Health, Happiness, and Wouldn’t You Think Sinkhole Would Be Two Words? Me too.
I’ve read this excerpt of Marc Nepo’s book at least a couple of times. I know this because I’ve underlined some things in blue and starred others in black–And even this morning while reading it for what is evidently the third time, I still felt inclined to mark parts of it. So I thought I’d share the whole excerpt here, because it really speaks to me, and I think it will to you too. Here it is. Have a beautiful day.
Rather the flying bird, leaving no trace,
than the going beast, marking the earth
Much of our anxiety and inner turmoil comes from living in a global culture whose values drive us from the essence of what matters. At the heart of this is the conflict between the outer definition of success and the inner value of peace.
Unfortunately, we are encouraged, even trained to get attention when the renewing secret of life is to give attention. From performing well on tests to positioning ourselves for promotions, we are schooled to believe that to succeed we must get attention and be recognized as special, when the threshold to all that is extraordinary in life opens only when we devote ourselves to giving attention, not getting it. Things come alive for us only when we dare to see and recognize everything as special.
The longer we try to get attention instead of giving it, the deeper our unhappiness. It leads us to move through the world dreaming of greatness, needing to be verified at every turn, when feelings of oneness grace us only when we verify the life around us. It makes us desperate to be loved, when we sorely need the medicine of being loving.
One reason so many of us are lonely in our dream of success is that instead of looking for what is clear and true, we learn to covet what is great and powerful. One reason we live so far from peace is that instead of loving our way into the nameless joy of spirit, we think fame will soothe us. And while we are busy dreaming of being a celebrity, we stifle our need to see and give and love, all of which opens us to the true health of celebration.
It leaves us with these choices: fame or peace, be a celebrity or celebrate being, work all our days to be seen or devote ourselves to seeing, build our identity on the attention we can get or find our place in the beauty of things by the attention we can give.
There is one component of this illness and autoimmune diseases in general which exacerbates the whole experience. The invisibility factor. You can’t see it. Many times when it shows its ugly head, no one is around to bear witness. People see us when we’re out and about and well, or faking it. I’ve lost count of the number of times I hear “But you don’t look sick!” People have a notion of what sick looks like, and this doesn’t fit the bill. One day you’re normal and the next day your plagued with something worse than a flu, or a hangover, but you didn’t do any drinking. It’s just such an enigma on so many levels, besides keeping up appearances, that it’s no surprise people just plain forget you’re sick. And it’s understandable. Because honestly, you forget too.
To this day I find myself committing to things as though I am normal, as though I have boundless energy, as though I don’t spend days in bed sometimes for no real reason at all. My circumstances aren’t normal. And some days I have to remind myself by the hour of my limits. Many times I fail to recognize them and I pay the price. So it’s no surprise that the people we love, the people we’re closest to-friends, lovers, family- they’ll forget too. And it’s easy to see why, but it will make you defensive. You’ll tell yourself they just don’t get it and they’ll never understand! And you’re right, they don’t. It’s impossible to know unless you’ve got it yourself. But don’t let that separate and isolate you more. You’ve got enough boundaries. When someone doesn’t believe you, when someone criticizes you, judges you, or doesn’t give the sympathy you’re looking for, let it go. Meet their disbelief with love and understanding. Because the truth is, if you weren’t sick with this, would you understand it? I know it’d be hard for me. I was young when I became ill but I remember distinctly things coming easy to me. Being a good gymnast. Getting good grades. Good family and friends. A 9-year-old with everything! I had no real reason for pause. I often consider what my life would be like had I not gotten sick and in general it’s with the notion that I’d be a better person living a better life. I really wonder about that now. Being sick and at the mercy of others help and kindness, I’ve learned remarkable lessons in humility and compassion, and those are just scratching the surface. I can’t say who I’d be without illness. But like my mom said once “Who knows? Maybe we if we hadn’t gotten sick we’d just be two capable assholes.”
The point is, when I still my mind and consider all the parts of this, I can understand the doubt, the skepticism, the misunderstanding from others. This is not a well understood disease, even for us sick ones. (But I know that one day it will be. I know that.) I remember once last year, I woke up with a pounding migraine. I was in one of my awful cycles. The first dose of medicine didn’t work so I took two, among my other cocktail of meds. I got out of bed around 1:30, hazy, tired, and the hint of my migraine still masquerading around my head. My boyfriend at the time saw me and said “You’re up! Hey, do you want to go shoot guns today?” At that moment I thought of 647 other things I would rather do than shoot a gun. The mere thought of shooting a gun made my headache perk up like what? huh? guns? Here I come!!! Even the suggestion of that activity made me mad. I felt really misunderstood and alone and thinking what I so often think: if they could only feel what I am feeling, they would understand. And it’s true. I think if most people felt the symptoms of CFS even for ten minutes, they’d have such a better grasp of what we are dealing with on a day-to-day basis. But that’s not possible. So it is up to us to communicate with love to those who don’t know. What we’re dealing with is basically invisible, and getting defensive and trying to prove it will exhaust us even more.
Besides my mom, who is also sick with this, I think about the one person who has been by my side throughout all of this, and has required the least amount of explaining. The answer is Monty. I realize that sounds juvenile. Oh Mary, you crazy dog lady..maybe you should talk to some PEOPLE. And truthfully I probably should. But I think about the number of beds Monty has slept at the foot of. Patiently he waits until I get up. Some days it’s only a minute..we don’t play and he doesn’t seem to mind. He follows me into the bathroom, he follows me out. When I go back to bed, he does to. And this is a very energetic and active dog. He could go all day, literally. But it truly feels like he picks up on sick days. When I wake up in the morning, he always takes some deep breaths really close to my face. It’s like he can tell by smell whether I’m going to get up or not. Sometimes he sniffs and hops out of bed ready to go. Other times he sniffs and goes back to bed. It really is like he knows.
The thing is, Monty doesn’t understand all the weird components to the illness. He doesn’t know what chronic fatigue syndrome is. He doesn’t understand why some days we play and other days we don’t leave the bed. Sometimes for a few days at a time. But he doesn’t even require an explanation or a defense, because what he is exemplifying so beautifully is living in the present. When it’s time to play, we play hard. When it’s time to sleep, we sleep like it’s nobody’s business. Whatever he does, he does fully. He shows up wholly to every moment. And it’s a truly impressive thing to witness. One of my favorite things is to watch Monty when he gets up in the morning. I open the door for him and he walks outside, stops, and sniffs the air for about 15 seconds. It’s like he’s taking in everything from the night and everything that the day will bring. I like watching it because it’s reflective, and we live such busy, fast lives, we constantly neglect reflection. I think it’s fair to say that it’s required for a happy life. We have to stop sometimes. We have to take things in. We have to feel our feelings. (Smell the roses, if you will.)And we don’t need to say it all on Facebook. Some things we should hold inside near our heart. Or whisper it to someone we love.
I am reading a book called Everyday Grace by Marianne Williamson which is incredibly poignant and really well-written. I find myself underlining entire pages. It’s always been a goal of mine to have a book club but of course I’ve never gotten it together and am bad at keeping commitments. So for now the blog will be it. And I invite all of you to read and share your thoughts on these books. I have about twenty more pages and will have a review/summary/dialogue next time. But if you’re looking for a book as a companion..this is a good one. It’s been seeing me through sleepless nights and reading it when I wake up in the morning gives me a happy way to begin the day. One of my favorite lines near the beginning is “We don’t need to push life so much as we need to experience it more elegantly, to be motivated more by inspiration than by ambition.” I like that idea. When I’m not in bed I let my instincts and inspiration guide me…even it’s just sitting on the porch swing and looking at the flowers, which I do a lot. Monty makes me throw a ball and swims laps in the pool. See?
Anyway, I am working on living a reflective life. I try to take in every moment truly, and feel it genuinely. Even if the moment is sad or fearful. I know that not feeling things through leads to trouble later on. I’ve been there before. For now, I feel happy. The sun is out and the porch swing is calling.
I spent last Spring in a playground called New York City. My brother and sister-in-law had this great apartment in TriBeCa with huge windows and a doorman. As newly jobless, apartment-less, boyfriend-less- New York City felt like the perfect place to spend some time and get to know myself again. I had lost all of my “identifiers ” and it was time to get in touch and adapt. It was truly a treat staying there while I reconfigured what my life was going to look like. My brother spent most the week in Boston teaching at MIT and Estee worked full-time, so I had this great little cube in the city to myself a lot.
My only responsibility as a guest there was to walk the dog, Lilly. Lilly was cool. Sweet and low maintenance, she was happy to spend day after day sitting on top of the heater with me and looking out the window to life below. I wrote, read, and occasionally played music super loud and danced alone in the living room. (One day I danced “the Dougie” too hard and exhausted myself for a week) If anyone were watching from the building across the street, it would have been quite a show. Lilly sometimes barked at a dog below or a UPS man unloading boxes, but mostly we just watched. It was a perfect, small existence for me at that window. New York City had a way of making me feel intricately connected to the pulse of life, even though I was sick and on the outskirts, and my only participation was mostly observation from the 4th floor. I never felt isolated in New York. Sometimes I ended the day feeling like I had interacted with so many people and in fact I hadn’t actually talked to anyone. There’s something so involved there, that even as a spectator I felt implicitly a part. I would watch the people walking their dogs or babies in strollers, laughing or yelling on their cell phones, entering restaurants and hugging friends hello, and it all made me feel incredibly human again. I could watch life from that window all day and never get tired of the sights. And most days, that’s all I did.
I really had to get used to the “free time.” I know that sounds like an illegitimate complaint, but going from working to not was hard to navigate. To strangers it sounds fun..”You’re so lucky! You don’t have to work.!” But that’s kind of like telling someone in a wheelchair “You’re so lucky, you don’t have to walk!” Truthfully it can be extremely lonely and isolating having absolutely nothing but time on your hands, but possessing none of the means in which to do the things you used to. It took me a long time to adjust to not having a typical day schedule to follow. Such is life. We notice things more once they go missing.
It was surprising how responsible I had to be with my free time. You can’t just do nothing. Nothing is the gift you give yourself after you’ve done something. But if you’re not actually doing anything, the nothing part becomes completely sad. You have to be responsible. It occurs to me now how much security and diligence there was in my fulltime job. A schedule is basically simple. Follow the rules 5 days a week, get paid, go home. There are things you say in an office and things you don’t say. Wear and don’t wear. I worked at that gallery because that was the progressive step after college. It was safe there. I knew exactly what was expected of me and I was good at what I did. And on the 1st and 15th of every month I was paid 1,060 dollars for following the rules and doing my work dutifully. There was a time work began and ended. And there were two entire days a week you had to yourself. It didn’t matter what you did on those days. It only mattered that you showed up on the right days and were on time if not early. Then all that was left was following the rules. Performing tasks. I do miss the stability of that old life. The one where at least I felt like I knew what I was doing and where I was headed and what was coming my way. Now there is none of that routine or structure. There isn’t really anything expected of me now. No tasks to check off, no paycheck twice a month. There’s no real order, and it’s a strange thing to very quickly lose something like that. There is ease in order.
As easy as it is to complain about work, to dislike your boss or co-workers, there is something very essential in human beings that gets fulfilled in just getting dressed and going to work every day; contributing to the “whole” some way and getting paid to do it. Even if the work is mundane or repetitive. Even if your co-workers are punks or your boss is a turd-sandwich, there’s something gratifying about good old fashioned compensated labor. Life becomes pretty different without it.
Part of my biggest adjustment in getting sick has been surrendering to a schedule that I can’t control. I don’t know how I’ll feel one day to the next, what I’ll be capable of. I don’t know if Ill sleep at night for 12 hours or 10 minutes. (Or if I’ll be up at 2 am writing this blog like I am now) So in a very bizarre way, the illness has literally forced me to live one day at a time. One moment at a time. What am I capable of right now? OK, I’ll do that. It has become that specific. And I think after nearly two years of no “real” job and crashing my siblings couches, I am finally understanding and accepting life without schedule, rules, tasks, and order. Or what I was perceiving to be order. The funny thing is now I see that even in my highly organized, scheduled life, I still wasn’t in total control. It only felt that way. It looked that way. I still got sick. Life still “got to me.” My life is no more or less in control now than two years ago. It is truly, just perspective.
My brother Nick encouraged me to read while I had so much downtime, and that was good advice. Here I was writing all the time, but never reading what was done before me. And you need context in everything, especially literature. I still have a ton of reading to do, but I’m really glad I discovered the real joy of it. Growing up it always felt like labor– a requirement that didn’t interest me. Now I find real freedom in it. There is nothing like getting lost in a story. I admit it’s more fun to read than to write. There is anxiety in me sitting down to write. But there is total surrender in sitting down and investing in a story.
Anyway now that I didn’t have a schedule to adhere to or specific tasks to perform every day, I was now up to my own devices. I realize that sounds like a really spicy thing to say. But mostly it was me in and out of dreamworld on the couch or sitting on the heater, looking out that window, and drinking coffee with Lilly. Every once in a while we mixed it up. Like when I dressed her up in my hat.
Or put her in my laundry basket.
Or if it was a healthy day we’d walk to the piers and watch the joggers and boats.
As nice as our walks were, I think I was most content at that window. In general, I am happiest by windows. I gravitate in every house to the room with the most light. I like to see outside. Hopefully one day, I won’t be the girl at the window, but the participant outside. The subject of someone else’s observation. But truly, I ‘ve become happy with this spectator form of my life. I don’t think it will always be this way, but it has granted me a unique perspective. It has made me step back and examine. It’s given me stillness in a very fast world. Even sick in bed, I can still examine life, ask my questions, read and write for the answers. None of this could happen in my old busy life. There was simply no time for it. There was work during the week, and sick recovery on the weekends. Now I have a new kind of work. It doesn’t pay well (as in, it doesn’t pay) but my boss is cool (that’s me) and every day is “Bring Your Dog to Work” day. Maybe the best part is, I am never too far from a window. For me, for now, that is enough.
“Participate with joy in the sorrows of the world.” -J Campbell
Health, Happiness, Windows
My friend Gabe took this picture of me at the NY window at night. Thanks Gabe!
I love getting late birthday presents in the mail. Wait, I love getting mail period. For one thing, I think the art of letter writing is becoming extinct, so it’s always pretty special to get something written in one of a kind hand-writing, written just for you. Dear Mary… Anyway, late birthday presents are like those blooper scenes they show during the credits of a movie you liked. Just when you thought it was over–bam! My brother Nick and his wife Estee sent me two new shirts and a skirt and a necklace with a hand-written card, the best! And my sister brought me shopping at Nordstrom. Her and Keegan have kind of adopted me as their 28-year-old child. Keegan even sent me to my room yesterday. I also unpacked my suitcase at their house two weeks ago, the first time I’ve really not lived out of my suitcase since February. All my siblings are like extra parents, each pitching in to help in their own ways and I am really thankful for that. It’s easy for me to forget that my situation could be a lot worse. They have all encouraged me to visit them, and that is a real gift. Anyway, I love shopping and I love new clothes, but it has turned into such a silly thing for me to love, mostly because I never wear normal clothes anymore. I never really go anywhere and I hardly see people besides Monty and my family. My uniform has evolved into leggings and t-shirts–every guys fantasy.
Last week and all weekend was a sick week. Like a sick day, but you know, times 7. I once wrote that I was the mayor of Migraine City, but I am upgrading myself this week to Governor because my head is super angry about something and apparently wants the world to know. Here’s your shot head, let it all out! Every day I keep telling myself I will get dressed in my new clothes and I will go somewhere and I’ll do my hair and makeup and look like someone who has her shit together. But, that has yet to happen. “Tomorrow” I tell myself. Then the song from Annie starts playing in my mind and I bet my bottom dollar that tomorrow there’ll be sun, and I will go out in it! Since I’m in Cali, there is always sun, but when you have a migraine, it feels like if you were to go outside under that bright sun you’d start melting like the witch from the Wizard of Oz. Anyway, the migraine cycle continues, but why am I talking about migraine cycles? I’m even boring myself.
When I’m in the throes of a sick week, I can start to get down. And also start to go stir crazy. So there are a few things I do and a few things I don’t do. Maybe most importantly, I do not watch TV during the day. There is just something undeniably sad about daytime television, and sunlight coming in through the blinds..maybe reflecting off the TV screen? Yuck. The only time I don’t find a sunlights’ reflection on a TV screen depressing is on the weekends when we’re watching football. Exceptions to every rule.
First, I keep a book on hand and I read. I swear it’s like I’ve discovered the joy of reading only last year..at age 27. Pretty ridiculous since I discovered the joy of writing at around age 9. I feel like I’m catching up on all the years that I began books and never finished them. I always associated reading a book with homework, something I had to do. It never felt like I had a choice in the matter. As soon as book reports became part of my schooling in 6th grade, it became my goal to see how little of the book I could read and how high a grade on the report I could get. Unfortunately, I work really well under pressure–so the night before it was due I’d skim through the book, find the important parts, and write a flowery report. I almost always received A’s on them. I was actually proud of myself for being able to complete the work this way! What an idiot. Anyway, now that I have really experienced what getting lost in a book is like, I feel like I have years of catching up to do. So that’s partly what I’m doing. Especially because it’s not sad at all to read while sunlight is coming through the window. In fact it’s the most fun to go outside and read. Monty and I had been going to the park daily, but I crashed mid-week and we haven’t been back yet. Anyway, right now I’m reading Wild by Cheryl Strayed. A true story about a woman who lost her way and decided to hike the Pacific Crest Trail by herself, with no experience. Truthfully, it’s a little difficult to read because she is in a lot of physical and emotional pain so far, and I like reading to carry me away from real life, so in that light it’s not been as fun to read as Gone Girl but I’m just about 1/3 in, so I’ll see how the next 50 pages go.
The second thing I do is create something. It can be anything from a four line poem to a line drawing. The goal is not to create a masterpiece work of art. The goal is to let your soul do some talking. Sometimes what you make will be crappy and sometimes you’ll surprise yourself. But the thing is, now no matter how sick or worthless I felt today or the fact that I never got dressed in real clothes, at least when someone asks me what I did today I can say “I wrote a poem,” or “I drew a picture of a stupid cat.” So now today was not a complete waste. Here are some simple rhyming poems.
*I am tired
But do not sleep
I am sad
But do not weep
I close my eyes
And count to 10
If I still feel it
I’ll do it again
Until the clouds part
And the dark clears
I’ll think of my loves
And not of my fears.
*In the corners of my mind
In the absence of a dime
I think about home
In a house that isn’t mine.
*At night I roam
through consciousness alone
Would I have chosen this
If I would have known!
*At least at the end of day
Where I never got dressed
I can say I wrote a poem
And that’s something I guess.
Normally I hate rhyming poems, and I don’t necessarily love these. But, they’re what came out. So I let them. Because that’s what my soul had to say today, and it doesn’t really matter whether it’s good or bad. It’s the fear of making something good or bad that is dangerous. Once I let that fear go, I kind of free myself. The worst that can happen is you write a shitty poem or you draw a shitty picture. Certainly there are worse things! Either way, you’ve got something to look back on or laugh at or talk about, and you weren’t completely at the mercy of illness.
I drew the above drawing a few days ago. It turned out to be one of my favorites…drawn on a sick day where I never got dressed. It started with a very simple shape; a leaf. Then I repeated the pattern and this is what turned up. I had no idea what I was sitting down to draw that day, but it’s another example of letting your soul speak. Or stillness speak. I just know that when I designate time to letting things come through me, I am usually surprised. I end up creating something I never could have thought of myself. It’s strange, the way sometimes your dreams can be insanely more creative or smarter than you are in real life. I guess it’s the subconscious at work. This one is titled “I Don’t Normally Look Like This” and is for sale for $10.
Anyway, that’s been the last 7 days. Fingers crossed that tomorrow is migraine free and filled with more energy and I get to wear some happy clothes and run errands like humans do. If not, well then…it’s back to the drawing board.
I’ve been on a non-fiction kick for a while now. But in Barnes and Noble the other day, I saw this black book..a simple cover with what appeared to be loose lines across the dust cover. On closer examination I saw that it was hair, wrapped around the book spine with wisps across the front. I don’t know what made me pick it up other than the fact that I am completely guilty of judging a book by its cover and I do it all the time. (Books. I’m talking books.) Like usual, I read the back, then I read the flap, and then the first few sentences of chapter 1. It was enough. I went for it. I didn’t let my typical indecisive nature get the best of me even though I’ve never been one for murder mysteries or suspense thrillers. It also then struck me I’ve never actually read a murder mystery or suspense thriller–they’ve just never really appealed to me. But I’m trying to challenge my uniformed notions about things. Something about this one grabbed me, so I grabbed it back.
I don’t know exactly how to do a review of literary suspense without giving things away, and there are so many things I could give away. Muah hah hah. But don’t worry I won’t. That’d be irresponsible so I won’t go far into detail. All I know is I took Monty to the park, sat on a towel in the sun and began reading. And even though I’m in sunny California, I could feel some kind of anxiousness growing in me, a glimmer of discomfort. It felt like it had gotten cloudy, like it was about to storm and I should go indoors. But reading the book indoors didn’t make me feel any more secure. It also didn’t stop me from reading every chance I had. I couldn’t put it down. Half of this book was read at 2 am with one eye open, because I was so tired that when both eyes were open I saw double. With one eye closed I could keep reading without double vision and without falling asleep. I was so exhausted night after night and I love sleep. I’m really good at it. But I needed to know what happened to Amy Dunne. She went missing on her and her husbands 5th wedding anniversary; not quite a “poof, gone” type of thing, but close. A strange trail of evidence and clues leftover, leaving me and most of the book characters scratching their heads. All but one.
The story is told through two voices; Nick Dunne, the husband, and via the missing Amy Dunne’s journal entries where we learn about their life together: how they met, their losses, and their recent move from New York City to the midwest along the Mississippi River. Both characters resonated quickly with me. I’ve had similar conversations and conflicts in my relationships, and I knew a lot of the feelings Amy Dunne was describing. But I also knew I was going to be thrown off simply because I was barely half way through the book and yet Amy had been missing 7 days, the cops had their killer, and something about Nick Dunne’s story felt wrong, and yet I wanted to believe him. Sometimes. And then I’d change my mind. It’s pretty classic in the “Crime rocks a small town” type of setup; the community gathering for support, the good cop/bad cop routine, press conferences with Amy’s parents in tears, and t-shirts and flyers with a pretty, missing wife on them. It’s all reminiscent of those stories we see on the news; Lacy Peterson, Natalie Holloway. The ones that sort of dominate our TV’s for a while, make Nancy Grace’s vains pop out, and then, kind of like Amy Dunne…leave, unresolved. Come to think of it, I need to google what happened in the cases of those women, because I only remember the sudden onslaught of news and anger and finger pointing, but I don’t actually remember hearing how it ends. America loves a pretty, missing woman. And the book touches on this phenomena too.
The most interesting part of the story for me is that the reader is no longer what we normally are in cases like this; the spectators. The jury. We’re used to seeing the stories on TV, seeing the pictures, hearing the accusations, and we often makes up our minds quickly about who’s at fault and who to feel sorry for. This time, we’re on the other end. We get to hear how police go about business like this. How reporters and the media can shift the people’s minds over night, if not faster. (It’s like being on the inside of a presidential campaign, I imagine.) We also get to hear the advice and rules a lawyer will give you when a country of strangers has their minds made up. The lawyer was my favorite character. I could see and hear him perfectly. I’ve seen commercials with this man, to a T. You probably have, too.
I finished the book about an hour ago. I have to say, I’m glad it’s over. I was getting tired. Not tired of the book, but tired from staying up so late every night trying to finish it. And a little tired from the unnerving nature of the story. I’d been talking about the book to my sister since I was only a few pages in. I tried to finish it before she left on a business trip this morning so she’d have something to read, and I really tried. I almost made it. But I didn’t. I told her to just buy her own copy at the airport. “It’s worth it.” I don’t know how I feel about the ending. I just know I’m ready to go back to the park with Monty and actually enjoy the sun this time. There was something about reading that story amid green grass and perfect weather that didn’t add up. It’s like playing Radiohead at brunch. It just doesn’t match. I wouldn’t call getting lost in this book particularly pleasurable in the normal sense. It was uncomfortable at times, upsetting, unsettling. But so good, so well written, utterly surprising and disturbingly real. I don’t know how author Gillian Flynn did it, but props to her, because it rocked me, and a few million other readers. It got under my skin and stayed there, and probably will for a while. As uncomfortable as it could be, it was really fun to read, fun to think about it even when I was doing other things. It kept me coming back for more more more and I kept wondering how how HOW in the hell it would end. I’d assembled at least 10 potential conclusions; none of them were right. I admit though I rarely get these things right. I only know it made me fear women and it made me fear men. It is a work of fiction, but the parts that stick have delivered something very true, very real. I get the feeling that even when I sleep tonight, finally able to shut both of my eyes at a normal hour, this book will still be swirling around in there. (Amy Dunne is also a restless sleeper!) It’s that good. It sticks. Even after it’s…gone. Get it? Yeah, you get it.
Health, Happiness, Gone Girl.
*P.S. Rumor has it Hollywood bought the rights to this story. Read it before they kill it!