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

Life In My Parents Pool House

So if I die I want that to be the name of my memoir. Isn’t is perfect? It’s funny yet sadly true. A sick girl-turned-woman living in her parents pool house and on their dime. With a dog. Wait am I a girl or a woman? Now I know how Britney Spears felt when she sang that song. In any case, it sounds like a Fairytale to me. I wonder how this one ends.

What I’m really getting at is that life in my parent’s pool house is great and I recommend that all 28 year olds or young adults in general try it. I had my first night in my new place three days ago. Waking up the next morning in my bed, in my own house was basically spectacular. You have to understand it’s been 2.3 years since I’ve been able to wake up under those parameters and having to wait so long and go through what I did has made the moment even sweeter. If felt like finally exhaling after a ridiculously long tunnel. I laid in bed for the next hour with a pure feeling of gratitude, and that’s all I can really do in these instances. Breath, reflect, take it in and give thanks. If you don’t they pass you by, and you find yourself years later realizing how good you had it only in retrospect. I realize how lucky I am to live in a beautiful house, to call it my own, to have a pool, and to be given help and time to heal, when my givers know I can’t really pay it back. I guess that’s what you call love isn’t it. Did I mention Monty loves it too? He’s also deathly afraid of the polaris but not enough to stay out of the pool.

Evil Polaris EVIL POLARIS

Moving into a house when you’re a sickly takes a very long time. Also having this month-long headache still isn’t helping, but who’s counting? I was overeager in the beginning. I wanted to set up every room and unpack every box and start painting walls all on the first day. It took a little overdoing and paying the price later to realize OK, this needs to happen one room at a time. Sometimes one piece of furniture at a time. And mostly one drawer at a time. It’s ridiculous to me how many times I have to learn that lesson. That overdoing it will be costly and painful, and yet I continue to overdo it and pay the price. And the funny thing is, most people I speak to with this illness (like my mom and everyone at the support group) say they do it constantly. You’d think we’d learn after all these years. We’re a bunch of stubborn dum dums!

Anyway I think the most exceptional part about living by yourself is the amount of time you can spend without pants. Like that first day, after I spent the hour of gratitude in bed, I got dressed and began unpacking and organizing and having these grand fantasies in my head like “And in this room I’ll have scrabble tournaments and in this room I’ll serve afternoon tea.” All of which will probably never happen. After a while my pants were really beginning to bother me. Don’t ask why–sometimes it’s noises and sometimes it’s clothing. And then it struck me that I could take my pants off and keep unpacking because THIS WAS MY HOUSE and at my house PANTS ARE NOT REQUIRED. So I took them off and unpacked in my underwear and soaked up the amazing feeling of being able to do what I want in my own place because I make the rules now. Yeah! Other rules include:

1. No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
2. Peeing in the Pool Is Actually Allowed. I know you’re going to do it anyway and come on, we use strong chemicals in there.
3. No guns.
4. All dogs allowed! In fact, no humans without dogs.
5. What happens at the pool house stays at the pool house. Like swimming. And scrabble.

So basically, there are no rules. I just want it to be a happy place and an open door to the people I love. I can’t guarantee I’ll be wearing pants, but hey the world has bigger fish to fry. This other cool thing happened while I was touching up paint the first day. I found my ipod from like 5 years ago and thought I’d play songs on random and be entertained from my 5-year-old playlists. The first song that came on was “Let It Be” by The Beatles and I totally stopped what I was doing and belted that song as loud as I could. I’ve heard it so many times before, but suddenly all the words felt like they were being sung just to me and my life. The lyric that really spoke to me was There Will Be An Answer. Because there will be. One day. Maybe not for many many years, maybe not even in this life on earth, but we will see what our lives mean in the grander scheme of things and we will get an answer to our pain and sorrow. I dream about that moment of clarity and revelation all the time. In the meantime, we just have to hang on. Pick up the pieces. Keep going.

Anyway, I played that song about 6 more times really really loudly and sang it really really loudly because that’s another rule: You can sing as loud as you want. Standing in the kitchen. In your underwear. In fact I recommend that’s how you do it. So below is the song Let It Be and I suggest you play it and belt it and let those words remind you that everything is OK. Even though, I know it’s not. My life is a mess. The world is a mess. I watch the news and I see it. I see war and poverty and violence and corruption and it all makes me feel very small. Very powerless. All I am is a sick kid who calls it a success if I take a shower frequently enough. But it reminds me of a quote from Joseph Campbell. He says:

“When we talk about settling the world’s problems, we’re barking up the wrong tree. The world is perfect. It’s a mess. It has always been a mess. We are not going to change it. Our job is to straighten out our own lives.”

It’s not the most romantic theory about life, but it can be reassuring. When I think about what the world has evolved from, (think even from the Civil Rights Movement to present day) it gives me hope that we will continue to grow. It’s all going to be OK. We’re here. We’re awakening. We’ve survived this much, and that’s what we’ll continue to do.

Health, Happiness, Pants.

Art!!!!!!!

Since my genuine exposure to the “old times” has been either black and white photos or black and white film, these color photographs that have emerged of life in the 30′s and 40′s have found their way into every corner of the intweb and are a real gem. Every time I look at them I feel like I am glimpsing a reality that I’ve never truly felt connected with. The olden days have been described to me by my grandparents and in magazine articles and I’ve laughed at the way actors speak in old movies and their gay, wordy advertisements– but for some reason it’s just always seemed like a story. It never quite felt personal. I know it was real, because my grandpa used to tell me war stories and I’ve sat through history class since 3rd grade, never truly appreciating that there really was life before me. So it’s funny to me that something as simple as color could bring something so distant to life for me, but these really do that. It’s like looking at thousands of paintings of Jesus and then being handed a headshot.

A Man Named Jack and His Family, October 1940

Basically, the disconnect between then and now was broken, and I dove right in. The prints were taken on Kodachrome by the Farm Security Administration and Office of War Information throughout the 30′s and 40′s respectively. They were then released by the Library of Congress in 2006 for an exhibition called Bound For Glory; America in Color. I don’t know why the element of color has upped the real factor to such a high degree, but I never get tired of looking at them. I have to remind myself constantly that they aren’t actors and  they aren’t in costume.

Homesteaders “Faro and Doris” Pie Town, New Mexico 1940

Woman Aircraft Worker- Burbank, California 1942

Bayou Borbeau Plantation- Natchitoches, Louisiana 1940

For as long ago as the “old days” have always felt to me, something about these color prints remind me it really wasn’t that long ago. Can you imagine showing the people in these photos an iphone? Or trying to explain the premise of Facebook? (Kind of makes me feel disdain for the times we’re living in) So much has changed and yet inside, I don’t feel we’re as far apart as we think. Then again when I looked at Facebook a few minutes ago, I may have changed my mind.

I think a lot about the “records” we’re leaving behind for the generations who will come after us. Looking for clues as to what life was like in our day, for the strands of humanity that tie us all together no matter how many years have passed. Will there be Facebook 100 years? How will our grandchildren study us? It hit me a few days ago that this blog is somewhat of a record itself- a sick girls life and her dog and yada yada. It then occurred to me that if I die tomorrow..the blog would live on. It has its own shelf life now. Unless I leave someone in charge to disassemble it once I’ve gone on. But I think I’m fine with it living without me. It’s turned into a community of sorts and that’s something I hope will live…forever? But my Facebook page– Maybe somebody should kill that.

So it was cloudy and California’s version of cold today and since it was one of those days that a normal person might go to a gallery..I brought the gallery to me and started looking at art online and some of this stuff was just too good not to share. It made me wish I was an artist. But the only art I’ve made lately is this drawing of Mario Lopez  from December.

Pen on Paper. $50,000 “Or best offer”

Maybe I should stick to writing. Or sharing actual artists work in this case. Here’s what really stuck with me today.

Price Tags

So this conceptual artist Rachel Perry Welty uses everyday items in sequence or on repeat per se to construe American “middle class minertia” as she puts it. In her show “Lost in My Life” she uses the byproducts of her domestic life to make for some unusual and beautiful prints. I couldn’t get over the stunning visuals and patterns brought on by tiny objects I see all the time.

Bread Tags

Twisty Ties

I love how she never shows her face and how the small pieces become part of her apparel. Awesome stuff! You can read more about her and her exhibition here or here. For me the most inspiring part to hear was that she didn’t even enter the world of art until she was 36, and her work and ideas emerged out of lack of materials and time as she was a full-time working mother when she began. Word.

OK and then there’s this:

Chairs, Istanbul 2003

How effing cool is this? Artist Doris Salcedo filled a gap between two buildings in Central Istanbul with roughly 1,550 chairs and her intent was to create a “topography of war” embedded in everyday life. Whatever you deduce from it, you can’t deny that visually it’s just spectacular and the simplicity of materials with such a complex and poignant result is surprising, not to mention its impressive scale.

Lower view

You can read more about the artist here or here.

OK last and not least I discovered a poem today that I found so incredibly enjoyable that I realized poetry can be fun and good modern poetry does exist. My friend Giselle, a ceramic artist, hates poetry mostly and I understand why, and a lot of the time I hate it too. (It doesn’t stop me from writing it or reading others) But this poem today, well it just really stuck with me and reminded me how much fun an often sad art form can be. It’s a little lengthy so click here to read it. It’s called Tap Water and is written by Mathew Yaeger. Job well done dude! A few favorite lines are:

What good is it
polishing to a shine the pile of dimes on which your life
has turned. You feel blessed or you feel regrets.

and also

When a woman has entered your life and then
left it you are changed and while you may change
forward into something resembling what you once were
you most certainly do not change back.

So, I guess that’s enough art for our cloudy cold Tuesday. Monty is bored. I’ll see you next time.

Health, Happiness, Art Gallery Day

What Happens In Vegas Goes On the Blog

What’s up party people? I took my first week vacation away from the blog and I really missed it like it was some kind of boyfriend I took space from. I’d have moments observing something or participating in a conversation and think “Aww, the blog would really love this.” Then I’d try to store things in my brain to access later but most of it drifted away like cotton candy. Anyway,  I have some items on the agenda to address beginning with something that might seem a little hard to believe, but believe it baby. I just returned from a bachelorette party in LAS VEGAS and I had the time of my life. Let it be known that I had no intention of attending this party weekend for obvious reasons. I have no money and no health. And yet it happened anyway.

Movie Poster for “Sick Girl at the Window”

I had three roommates throughout my tenure at LSU and we were kind of just our own family. We all studied abroad the same semester so we could meet up in Europe together. We tackled the angst of our early twenties together. When one of us went through a breakup we all felt it in a weird way, as sappy as that sounds. We were tight knit, and those years in college were the best of my life. Inevitably, it became difficult to maintain such closeness after college, as much as we all wanted to think it would never change. Geography, jobs, marriages, and ailing health took their toll on the crew and slowly those days of casual conversations on the porch about nothing became fewer and further between. Admittedly, I am absolutely terrible at maintaining and keeping up friendships in the sense that I rarely answer my phone or fill people in on “What’s new in your life?” I am for sure the worst in our crew. But with those girls it always felt like I could go a long time without seeing them and pick up where we left off. That’s the way to define a best friend isn’t it? Very, little, maintenance.

I remember after getting my full-time job at the gallery after college thinking “Hmm, how does one go about making friends after college?” I was the youngest person at the gallery but aside from age, I felt a real void not having that crew along for the ride. I wasn’t proactive about making friends, especially since most of my weekends were spent in bed recuperating my body anyway. I was nostalgic for the ease in which those three girls and I were friends together.

The first one in our crew was married in 2011 and in true female form, we all screamed and freaked out about it for a while. It really drove home the point that college was over and we were getting older. Last year we got a similar photo text of Tiffany wearing an engagement ring and now the second one of us was “biting the dust.” Once again in true female form, we all screamed and freaked out about it as we begged for details and said all those incredibly female things like Oh my god!! How cute!!! So romantic!! When it came to my attention that Tiffany’s bachelorette  party was going to be held in Las Vegas, I felt a pit in my stomach. I’ve become pretty accustomed to missing out on things due to my lack of health and funds. But this one stung more. I have desperately missed my friends over the last two years. Especially the last few months. I feel like I’ve been a third wheel to other couples and their respective social groups for a while now, and I’ve missed the comfort and lack of effort being with your own great friends affords. I was sad to see the party would be in Las Vegas because there was just no way I was going to be able to make it and I resigned myself to the fact that it would be just one more thing I would have to miss.

But a month ago they informed me that whether I wanted to or not, I was coming on this bachelorette party. “We’re buying you your plane ticket and you’re coming,” Emily told me. Of course my ego and pride always protest a little when people volunteer to buy things for me or help me out, because a part of it just feels wrong. I want to be able to pay my own way. I don’t want to be a burden. But they insisted and I once again learned a lesson in gratitude and humility.  Sometimes you need to rest that “Oh I couldn’t possibly!” reaction, and just accept with grace the gifts that are offered to you. But there was still another problem; even if they bought my plane ticket, how in the hell would I survive Las Vegas? A month ago I was barely walking! My mom and sister insisted that for my flight out there I use a wheelchair in the airport and then get a wheelchair at our hotel and let my friends take turns wheeling me around. This was once again, going to stir up things in my pride. I don’t want to use a wheelchair, I want to use my own two legs to walk. But I also know that every time I fly, I crash the next day, sometimes for like a week. I know if I walk for more than 10 minutes some days, I pay for it for days at a time. So we were proactive early on. We made a plan.

I would use a wheelchair the day I travelled, and I would also use one at the hotel and try to stay horizontal or sitting as much as possible. I had been reading that some people with CFS have found relief using adderall so I brought some with me to take at night so I could stay awake for dinner and everything after. I began praying constantly, whenever I thought of it, for strength and energy and for things to go smoothly while I was there. I had nightmares of me sleeping the entire trip away in a dark hotel room. But honestly, I thought, even if I don’t make it out after, it would be worth it me to go there and have dinner with my friends. It had just been so long since I had done something purely recreational like this. I knew my soul needed it. So we prepared as much as we could and I left the rest up to the Gods of partying and drunken debauchery.

As I stood in the crowded lobby of Caesars Palace on Friday night, over stimulated by the sounds and sights of Las Vegas, I saw out of the corner of my eye two girls pushing a wheelchair with huge smiles on their faces, headed in my direction. My heart wanted to explode. I was so unbelievably excited to be with them again, and to know that just like in the college, they were in my corner again and I was in theres. They would push me the entire weekend, even when I would say “Nah why don’t I just walk..” My friend Emily would put her foot down and insist I “wheel it.” I quickly got a small glimpse into the life of someone who is physically or mentally disabled because people stared at me in that chair. I thought of those who are physically handicapped or disfigured and how many of those stares they have to deal with on a daily basis. I wonder if they get used to it or if after years it still gets to them.

Besides being with friends again, one of the best parts of going on that trip was feeling like a WOMAN again. I wore dresses and high heels. I had my nails painted red, did my hair like celebrities and smelled sexy, because I could. I’ve been sick and wearing the respective sick costume so long, I needed to remind myself that if I really wanted or needed to, I could still take the time and emerge out of a hotel room with my heels clicking on the glossy floor, and make a man look twice. It’s just plain fun to play dress up. And even at age 28, I don’t feel any different than when I was five and I would clumsily walk around our kitchen in my moms high heels 6 sizes too big. All of life just feels like theatre to me now. Two years ago I was wearing the corporate girls costume in pinstriped skirts and last year I wore a sick girls costume and this weekend I was all dolled up at a club and no one knew the difference. I think I really needed to give my mind a rest from thinking about being sick all the time. It can be extremely consuming and I am always cautious not to let my “story” dictate who I am. It’s always been a fine line. But this weekend, for the most part, I was just Mary. A girl with her friends celebrating the upcoming marriage of one. I danced my heart out to terrible music in the VIP section at clubs. I drank gin and tonic and flirted with boys. I even kissed one, just to make sure I still knew how. Turns out I do. I had the time of my life and I think I needed it more than ever. How am I feeling now? Well, kind of crummy. It’s catching up to me. But at least this time, I’m paying for a great time I had, and it was well worth the price.

We Are Women Hear Us Roar

Thank you to my friends for insisting I go and helping pay the way. I needed it. I’ll pay you back when I’m a millionaire one day.

Health, Happiness, VEGAS

White Girls on Facebook: Part 2.

1. Write the name of an alcoholic beverage and a question mark followed by “Don’t Mind If I Do!”

Ahhh much needed.

2. Talk about how INSANELY busy they are and the massive amount of things they have to do! So much so they spend the next two hours on Facebook talking about it!!

3. Use “LOL” questionably and in an overabundance. “I have cancer lol” “Me too lol”

4. Some version of this picture, allll up in your biz.

The bottom half of my body enjoying the beach.

4. Talk about preparation for tomorrows workout, take a picture of today’s workout, or reflect on the burn from yesterdays workout.

5. Delve into the recent cold they caught, list all the corresponding symptoms of said cold, then tag a photo of Dayquil and Hot Tea. Potential Caption: Yucky sniffles AND a sore throat!

6. Take a picture of herself scandalously dressed and tag it with this caption: “Hey you.”

And by you I mean me.

7. “Today I am thankful for gratitude lists.”

8. Attempt a really inspiring, self-written life quote. “Never take advantage of anyone. Life is short but regret is forever. Always thank your lucky stars and never forget to dance. Even in hard times, the sun will shine through the night.”

9. Talk some major smack about football and/or their fantasy team. Then talk some major smack about The Bachelor.

10. Take a picture of basically anything and caption with: LOVE. <3 <3 <3

LOVE.

12. Girls Night Out!! Prepare for pictures, captions and a play-by-play before the night is halfway over.

11. Something borderline horribly offensive followed by “Just Sayin.”

13. Picture of the hubs taking a nap with the baby!

LOVE.

14. Vent a frustration beginning with WOW. “Wow, I was under the impression that a STOP SIGN MEANS STOP.”

15. Duckface. Forever and Ever and Always.

Yall come to the party I’m having by myself in the bathroom!

Health. Happiness. Facebook. GIRLS.  <3

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.

Sixteen Clementines

It is a dreary, rainy day in California today. I love it! It was this way yesterday too. I had been feeling a little home sick lately and now suddenly I have damp Louisiana weather–the in between cold, lonely drizzle outside. It’s superb. It’s so anti-California. Feels like home to me.

When I stepped out into the rain for our morning walk, I was expecting to make it quick since that what’s you do on days like this-stay indoors. But Monty seemed so happy frolicking around and it felt pretty good hanging around out there, that I just let him get wet and play in the mud and people laughed as they walked by. I’ve always let Monty get messy if he really wants to. There’s no real problem with it..dirt washes off! So we got dirty.

Mud.

Health-wise I have been improving since the whole too weak to move crash, slowly but surely. My naturpath doctor received some blood work two weeks ago that confirmed I still have lyme disease, as well as two co-infections (one is Bartonella, aka as cat scratch fever..what the hay?!) and one parasite in my gut. All right!! This is good news though because they were definitive results and allowed us to move forward with a treatment plan. Since she is a naturpath she doesn’t use antibiotics to treat things, so combating the lyme this go around will be a little more complex. I could go into the details but I don’t even understand them entirely and it’s pretty boring anyway. It’s a crazy coincidence that my doctor studied a while with one of the top lyme specialists in Northern California, so we’ve got that working for us. If we can’t get it under control with her care, she’ll send me to him.

I forgot to mention that part of seeing the naturpath is going on a major detox where you avoid gluten, dairy, corn and you drink this protein shake all the time which actually tastes decent! After 6 years of convincing me to go gluten-free, my sister can now rest easy knowing I’ve made the step. For now anyway The diet actually isn’t so difficult to adhere to but that’s because my sister keeps the house stocked with stuff I can eat and pretty much brings me dinner every night. You may ask yourself, what do you eat? The answer is yams. I eat a lot of yams. Kidding. Well, I did eat a lot of yams in the beginning. But the point is to mostly eat fruits, vegetables, and a lot of protein. So that’s what I’ve been doing. Yesterday I ate sixteen clementines. For real. I can only eat at least four at a time. They’re just so small and addicting. I don’t know that I’ve been able to tell exactly what difference the diet is making since there are so many variables right now, but I do know it’s nice to feel good about what goes into your body. I admit I never felt great mentally after stuffing my face with fudge sickles at 2 am. Mmmm fudge sickles. That sounds so good right now.

Since I’m pretty obsessed with the Holidays and Christmas in particular, I told Amelie and Keegan that since I’m a sick kid they have to grant me a wish like the Make-A-Wish-Foundation advertises in the commercials. (On top of housing, feeding, and caring for me, of course.) My wish was for a real Christmas tree and the day after Thanksgiving, we did it! She’s a real beauty. If she had a name it would be Anastasia. We’ll hang small milk bones on the bottom so that Monty will tug at those and not the real ornaments. There’s nothing like the smell of a real Christmas tree. It’s like Winter, Happiness, Warmth and Love all wrapped up in a smell. On top of that I’ll be blaring Christmas jams and watching Elf on repeat which my brother-in-law is really excited about. What can I say, I’ve always loved Christmas.

Apart from yuletide, I’ve been watching Woody Allen movies, taking pictures of people’s windows, and writing things late night I still don’t entirely understand. I still need to watch Crimes and Misdemeanors which I hear is one of the best..but Annie Hall is so ridiculously lovable it’s been hard to forget.  I loved Manhattan too but it made me nostalgic for Annie Hall. I liked Melinda and Melinda a lot and also Alice. Husbands and Wives may have been a little too neurotic, and Midnight in Paris was the best! I really loved that one, and Owen Wilson’s character. Too good. Tonight I’ll watch Play It Again, Sam and then maybe I’ll get back into reading. Somehow I kind of stopped. Anyhow, I keep taking Monty on walks around our complex and I love seeing people’s windows from the outside. The blinds are always closed but people put little decorative pieces to view from the outside, and I like seeing them. I don’t really know why. So I started photographing them. I also realize it ups my “creeper” level a few notches, but I can’t help it.

Dog. In a Sweater. YES.

Batman. He lives.

Cups.

That cat.

 

 

 

 

 

 

 

 

 

 

 

Health, Happiness, Window Shopping.