Today Is Wednesday.

Today it is hard to wake up. It is hard to move my fingers and hold this pen. Everything is heavy as though my insides are all made out of lead. If you’ve ever tried running underwater in the deep end of the pool, then you’ve had a glimpse of it. It’s hard to say why my body has backtracked these few days. Last week felt like a good one, more solid than the past, and this week things fell apart. Did I get too sucked in? Did I overindulge in the tasks of the busy world? The fast work. The chattery world. The one that I used to think didn’t have room or time for the sick?  (I’ve changed my mind on that one.)This is often the culprit–engaging in too many things that in the end don’t really matter.

So now I will rest. I will sit in the room with the big windows and let the light in. The dishes will wait. Paperwork will wait. Even Monty will wait. Every once in a while he’ll get a burst. He’ll paw at my chair- but behind his brown eyes, sometimes so deep and intense I wonder where his mind is- but he knows that today will have to be one of rest. He curls into the half moon shape at the base of the chair, back to doggy-chasing rabbits-gratuitous bacon-dream world. I apologize and I don’t know if he understands or cares, but he is a creature of the present and for that fact alone he doesn’t seem to mind. It isn’t in his DNA to mind. When we rest we rest and when we play we play and there’s no good reason to cry or complain when we’re doing one and not the other.

Even though it’s a sick day, a string of sick days that always has the grim potential to turn into months of sicks days, I want the world to know that it doesn’t feel like suffering. It just feels like something the day brought- as though it were sunshine or rain or an LL Bean catalog in the mail. It doesn’t feel personal. I know people who take offense to the rain. How dare it rain on my wedding day! Who cares? Nature is balance, nothing more. I’ve been practicing putting the sickness in the same category as the behavior of nature. It takes the sting of it away. Today is Wednesday. It’s humid and raining off and on. My limbs are heavy and stiff and my fingers don’t fold so easily into my palm. The invisible wet blanket of the illness I carry is extra wet–maybe from the rain! But none of this has anything to do with how happy I can be. How much joy I can find.

The things that thrill me still exist. Monty’s tail still wags when he sleeps. The smell of the magnolia tree outside is heightened from the rain. I have a house for Monty and me. A home base that isn’t impatient at all when my life has to slow down. I don’t have to run from sick days. I can let them come and let them leave and not get upset in the meantime. Simple pleasures still exist. My eyes can still take them in. And even if my eyes give out on me, my heart will still know the joy of it. My soul is learning to open slowly, much like the magnolia I picked that is now wide open at my windowsill. I am hanging on to life’s little treasures and remembering and emphasizing and reminding my busy brain that all of these things exist no matter what condition my body is in or what kind of outlook I have. I can stay closed until I think life is going my way or I can open up wide to the world and the sun and every person and animal I meet. It is in fact, up to me. If it’s left up to anything else, then happiness will be a constant, conditional pursuit and never actually attainable. I think when you’re around happy things enough, you start to see where they have it right. Today is Wednesday. It’s muggy and hot. I am heavy and dragging. It will be a good day.

Mastery of Life is the Opposite of Control. -Tolle

Health, Happiness, Wednesday.

The Only Gift to Give

(me)

For as long as I can remember, my mother has never been one for presents. Specifically cutesy presents like mugs that say # 1 Mom! or trinket-type gifts like the kind from the Hallmark store. I guess at her age and after four children, she’s accumulated enough “stuff” to last until her end. She gets it. She’s the worlds greatest mom. Enough with the mugs already! It’s not that she isn’t sentimental, because she is. It’s more that now, those $20 items from the mall just seem gratuitous. She will always say “Thank You” to a gift but I know she’d rather we save our money or donated it to someone or something that really needs it. It seems like free, homemade gifts have always been her favorite. Since I’m living under her roof and on her dime, it wouldn’t make sense to buy her a gift anyway. It’d be with her money! I’m like the little drummer boy but all I have to give are words. “I have no gift to bring Pa Rum Pum Pum Pum!” Anyway, I guess every mom just likes to know they were thought of in a meaningful way. I’m not a parent so I couldn’t know, but I’ve heard it’s both the hardest and the most rewarding job on the planet. Most of the time your efforts go unnoticed, or under-appreciated, or unrealized until decades later, and it’s good to set aside a day to let them know: We noticed the work you did– and thank them for it because it’s a job well done. Here is my totally affordable thank you to a mom very deserving.

I want to say that whether you knew it or not, I’ve been taking notes from you. Because more than someone who performs countless motherly duties each day, a mother is also simply a model human being for her children. Everything you were doing as an adult, were things I observed and learned from.  Watching you navigate through dark times. Noticing your courage and grace when things fell to pieces. Watching you keep going when it would have been easier to give up. Those are all things I will carry with me–forever. I never felt too young to take on the lessons you were learning yourself. If I am ever a mother I will hope to pass those things down to my own kids. But as a singular human being, I will keep them with me and they will guide me long after you’re gone.

Perhaps the best thing a kid can tell their mom is that they’re happy. The last few years have been extremely difficult for me. And I know that as a mom, having to watch your child suffer is even more painful. So often she told me she wished she could go through the experience for me, and save me from the pain. I think most parents would agree. They’d prefer to take on the hardships themselves then have to watch their child go through it. But as much as parents want to protect their children, hide them from the pain and perversions of the world, they also have to trust that they have instilled enough love, value, self-esteem, and wisdom in us so that we may not run from the hardships, but that we may find our way through them, and come out of the other side intact–wiser and stronger, not bitter and broken. I want to tell my mom that even though life has been at difficult, sometimes unbearably difficult, and I’ve wondered how I’d get through, that I would reflect on her life and remember all of the hardships that she had emerged from. The memory would remind me that I could do the same. I’ve always known that at the root of everything, I am loved. Unquestionably. Unconditionally. Consistently. I have always known that. And that knowledge makes a difference to a kid. Whether we’re 3 or 30. I wonder what the world would be like if every child knew that. In times where I didn’t feel like I could keep going for me, I knew that I was loved enough that I would keep going for her, for them. And that guided me. That kept me going.

I know that  watching a child in pain is almost unbearable for a parent. I could see it in her eyes when I was sick and incapable of many things last year. It hurt her too. But I also know that there are few greater feelings than a parent watching their child experience joy, find happiness, emerging out of the other side of darkness. I want to tell my mom that I am happy. That I’m OK. And no matter how hard my life gets, I will always be OK. Because look what we’ve already made it through! It used to frighten me, remembering how hard life can get. But now it strengthens me. It’s a choice; I can think of either the rough times and be afraid or remember that we made it out of them and be reassured. I know that being a mother and worrying go hand-in-hand, but I want to tell you not to worry. I am OK and I will always be OK.

I think in the end it doesn’t come down to how many shirts or mugs or magnets you have in your drawer of trinket gifts. Those are things and things are temporary. The love and the lessons you handed down are what is forever. The love you gave through happy times and sad times. The wisdom you exuded when it felt like the world had turned its back on us. Crying when you need to. Laughing when you need to. But never turning bitter, never giving up. All of these learned responses are what you handed down. They are what we will hand down. And the next generation will hand down. And that’s the thread of life being sewn across the world. Nothing temporary about it.

I guess all of this is to say, job well done. Your work will live beyond your life.

Love,

Mary (and Monty)

P.S. Since your other children are out of state, they each wanted to draw you a picture for today. In case you forgot their age judging by the quality of their art, I’ve included them for you.

Health and Happiness and Happy Mothers Day!

This is from your oldest son Doug. He is 35 years old.

This is from your son Nick. He is IV league educated.

This is from your daughter Amelie. She’s a designer. (Age 32)

You’ll Forget. And So Will They.

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?

Please just throw the ball.

 

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.

Health, Happiness, Smelling the Roses

Baby Talk.

Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.

My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.

I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.

They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.

It’s so easy!

It really is quite easy. Cheerio!

Someone make it stop.

I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?

After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!

Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.

Health, Happiness, Babies.

A List of Mildly Pleasing Things.

The sound a rotary phone makes
When you hang up the receiver.

The smell of tires
And how you know before you walk in
the door of the auto shop
that the computer will be old,
and the colors will be red and black.

The sound of ice in a glass
And a something liquid gold
pouring slowly in.

When Monty’s Tail Wags While He’s Sleeping.

Riding in a cab
In New York City,
going anywhere.
The urban slideshow
through a square cracked window
slows down the fast city.
and the driver mumbling
in a quiet language an American girl
who’s pretty
will never need to know.

The way Gwyneth Paltrow smokes cigarettes in The Talented Mr. Ripley.

.

The second of stillness
When you drive under a bridge in the rain.

New showering products.

A woman tying a man’s tie.

The crinkling of a newspaper
When a man eats his breakfast
With one leg crossed over the other.

Being a woman
Wearing a dress
Smelling romantic
and the clicking of heels
on the old wooden floor
toward whoever spent the time waiting.

A fresh piece of chalk
on school chalkboards.
And the slowness and fragility
of that 90 year old librarian
Who stamps the due date in my book
with her veiny tissue hands.

That feeling you get
When you kiss someone new.
Like everything is different
Though everything’s the same.

Health, Happiness, and Tiny Little Pleasures.

Home Is Where the Holiday Is

A funny thing happens after you leave your parents house and go off to college or out into the world to find whatever needs finding. You start making connections with people and places that aren’t familiar, that aren’t necessarily where you grew up and learned how to be you. Most people go through some sort of transition, often in their twenties, where home base may turn out to be far away from the original. Now more than ever, I don’t have a short answer for where home base is. When people ask me where I’m from, I have no idea where to start. “Well I was born in New Orleans, but I grew up in Colorado until we moved back to Louisiana when I was 16.” “Why did you move back?” “Oh well, my dad died when we were living in Colorado. But then my mom met and fell in love with someone in Louisiana so we moved back. But then THAT GUY died too. *Pause for uncomfortable silence and obligatory “Sorry to hear that.” “Oh my gosh I’m sorry to hear that!” “It’s cool. She ended up falling in love a third time and has remarried again! But lately they’ve been in Colorado, where my moms family is.” “So why are you in California?” “Oh, well I came out here to dog-sit for my sisters in-laws but then I became increasingly ill and have kinda just been living on their couch since September.” “Sick with what?” “How much time do you have?”

My life has never really had a lot of stability. Moving in the middle of high school from Colorado to Louisiana kind of threw everything off. I attended three different high schools and once in college, like most kids, we moved every year. I studied abroad one semester in France where my home was the tiniest room I’d ever lived in, but it was completely comfortable and adequate. I loved it. I spent summers in New York where my brother’s apartment on Lexington was home. After college I moved to New Orleans and got a grown-up job. I finally had an apartment I loved (huge windows) and I lived alone, which I really treasured. But I only had it for 6 months. Getting sick in January, riding in the backseat of my parents car after that day in the hospital, something told me I wouldn’t be in my own home for a long time. And that certainly turned out to be true. Since that night, nearly two years ago, I’ve been living in other people’s houses. I’m lucky I have so many people willing to host me. But truthfully, I dream of the day when I can have home base back. When I can have things the way I want them. When I’m not stepping on anyones toes or breaking whatever house guidelines there are. Living with people is tough at best. And that’s the case with most everyone. If I want the comfort of “home” I have to go inward. Feel who I am, believe in what I’m doing, and trust that I am where I’m supposed to be. Isn’t that the comfort of “home” after all? A place that knows and understands you, a constant among change, a softness where the world is hard.

I remember thinking the universe was playing a cruel joke on me. Finally after years of bouncing around, dealing with the work of roommates and compromise and “Who ate my burrito?!” texts, I had my own place. I was settled. Just me and Monty. I hung curtains and picked out an area rug and was finally living in a space I totally identified with. I remember picking out decorative pillows thinking, “Only an adult buys decorative pillows!” Maybe it’s a desire among the youngest in families, to finally feel like an adult. I don’t know, but I was on my own and that felt really really good. And then, it was gone. As much as I loved the independence, I had to let it go, because being sick didn’t allow me that self-sufficiency I had earned anymore. I would have to learn to rely on others, to ask for help, and to be appreciative even if I felt bitter. It’s been one of the harder lessons to learn among all this–Humbling at best. Turning bitterness into gratitude is like trying to fold a fitted sheet- I’ve heard it’s possible, but I’m rarely able to do it. They’re both art-forms I am still trying to master.

So now here I sit in Colorado, in the town I grew up in, at my grandmas house. It still has the familiar smells (somewhere between a library and church) and familiar sights (the picture of me from kindergarten on the great wall of grand children.) and the same rules (Everyone write your name on your cup and drink out of the same one!) Is this home? Or is it California? Or New Orleans? Well, for the next week or two, it’s here. Where my siblings and nieces will shuffle in from all over America and make lots of noise and pull lots of pranks and inevitably play a game of monopoly that may or may not turn ugly. Where we’ll eat big meals and fight over who my moms favorite is and sing songs off-key around my brother Doug playing piano. There will be dogs and babies and gifts that nobody needs. But the best part about love is, it doesn’t need a certain city or house to flourish. It can grow anywhere. I suppose that’s another art-form I’m attempting to master. And I guess where love grows, is where I’ll call home. This Christmas, it’s Colorado.

Health, Happiness, and Happy Holidays– Wherever Home Is.

I’m going to use this pose in all my pictures. .

“Home is where you can say whatever you want, because nobody listens to you anyway.”

-Joe Moore

Life at the Window.

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.

Our cube with the light on.

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.

Life at the window.

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.

Lilly wearing my hat with attached scarf.

Or put her in my laundry basket.

Why are you doing this.

Or if it was a healthy day we’d walk to the piers and watch the joggers and boats.

Contemplation.

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!

Night.