It’s raining. And whenever it rains it feels easier to write. So I’m forcing myself to sit down, because lately, the words haven’t come as easy. I have this recurring nightmare type of thing, although it doesn’t come at night–it’s more a dull anxiety beyond the curtain in my brain- that one day I’ll wake up, and have nothing left to say. Nothing left to write. None of my ideas will be new. Whatever creative juices that used to run through me will have all run dry and I’ll be sitting there, blank pages in front of me, and have nothing. left. to say. Luckily, that day is not today. I have some stuff to say I guess.
The funny thing about my little recurring nightmare, is that ironically, the only way to avoid it is to keep on writing. The longer I go without doing it, the harder it becomes. Sometimes I cringe at what I’ve written, and I’ve deleted entire pages of text that just didn’t seem to “do it” for me. But this is my art form and I care about it. It isn’t really a hobby I do on the side anymore. It is my principal work for now and once you’ve come to care this much about what you do, you really have to nurture it or it will fade. Like a marriage of sorts, or any relationship at that. The interesting part of it is that continuing to produce only gives way to more creativity and newer ideas. Not the other way around. It’s not some finite jar you reach the bottom of. My nightmare is possible I suppose, but more likely from me having abandoned the work, not from literally running out of ideas. If the universe is infinite than it’s true, our ideas can’t run dry.
I have to remind myself pretty regularly that whether the words come easy or hard, to just keep going. If you give in, well then what kind of a writer are you? I think beyond your final product, being an artist is in the way you live and in how much you give of yourself. Not just when inspiration comes but also when it doesn’t. There is debate in the literary world on whether or not writers block actually exists. I can say that without a doubt, there are times when it’s easy and times when it’s alarmingly difficult, but I think the point is that you just keep plugging away. It was Picasso who said that inspiration exists, but it has to find you working first. You can reject entire pages later if you need to, and there’s no harm in discerning good work from bad work even if a great majority of it is bad. It’s nothing you can hurry or fake or force. You just have to keep working humbly and the right words always find their way out. Think of Michelangelo sculpting his masterpieces like David. He said it was his job to carve away the excess, chip away at everything that wasn’t David until David emerged.
I know that the worst I can do now is let a gift pass me by. In stillness I know that being capable of writing is not something I own but something that was given to me. And I feel that by not putting it to use is letting someone down somewhere. I fight lethargy. I fight distraction. I fight excuses. It’s been a while since I’ve really sat down and put my words to use. And I have to remind myself everyday that very easily I can let all this slip by me. It takes commitment and participation on my end and sometimes I actually have to talk to myself out loud and force myself to move things through me. I do this because it’s not about me. It’s about something bigger and longer-lasting than me. And I don’t know what that is yet. But I know I have to keep at it. And I guess on this rainy Thursday, I am being reminded in more ways than one to keep going. Keep writing. And someday the pieces of it all will begin to make sense. Carl Jung said the details of his life would only make sense in the context of the centuries. Maybe that’s the ticket.
Most mornings start out the same for me. My eyes peel open slowly like velcro. My insides feel like they want out. Everything feels out of balance. I throw pills in my mouth, make my pot of coffee, let Monty out, and wait to feel human again. It isn’t the best…mornings have always been the hardest. But roughly an hour later, I start to feel better. The pain subsides. The disoriented, dizzy haze fades, and I sip coffee slowly and let my thoughts organize themselves. Once I’m human again, Monty starts making noises that imply if we don’t go outside and play in the pool soon he is going to explode or implode or something of that nature, so we go. He jumps in immediately, I sit in the water on the first step, and the day really starts. I’ve come to love our routine. It feels good spending so much time outside. Especially after a year of feeling so imprisoned to the indoors. Lately, the last step of morning involves saving frogs from the pool. They are really tiny; cute actually. Usually there are at least 5 of them. I try to keep them together, like they are some kind of family I’m rescuing and I don’t want the children to get separated. I have no idea why I feel this obligation to save them, but I do, and so I do.
They are such incredibly small animals, sometimes I just watch them. I feel bad when I find a floater who didn’t make it. I scan the sides of the pool twice where there are usually one or two and then the two round filters that catch the extra debris. I then usually carry them to the nearby ditch so they can hangout in natural water. Last night, Monty was muddy so I walked him out to the pool to clean him off, (this is now what we consider bath time) and when we approached I heard a loud splash of something that jumped in. When I looked in the filter, a huge frog was in there, spinning from the pump circulation. Certainly he would have died in there. The steps are too deep for them to jump back out. I took him from the filter and released him in the garden, and told Monty to be gentle as he sniffed up close after every hop he took. Then I played “Folsom Prison Blues” to him on my guitar because I learned that song recently and it’s really fun to play. And what’s the frog going to do? Walk out on my concert? Come to think of it that is what happened, but you see my point.
Anyway, it’s interesting to look at such physically tiny life that we normally never see. There’s plenty around here. Including wolf spiders that are INSANELY large and terrifying-looking, but ultimately harmless. So when they’re inside I catch them in plastic cups and throw them outside, basically screeching the whole time because if it escaped the cup and crawled on my hand I’m pretty sure I would pee myself.
There is a huge variety of birds; there are mice and turtles, spiders and lizards, and even these tiny bunnies that Monty chases away. I like watching their world. Something about it makes my problems feel smaller, and I don’t know what the explanation is for that.
Anyway, I really don’t like killing anything alive. Especially because I don’t feel like they are in my territory but that I am in theirs…and it seems so pointless to kill them. There was a time I wouldn’t mind killing tiny things, I think. But now the idea doesn’t sit right with me. (Except mosquitoes, screw them.) So I catch them and release them. Save them from the filters. If anything, it helps me feel like I’ve done something. There are many stationary days. Sleep filled and cloudy. It makes sense to save something from drowning if only because I haven’t done anything else that day. I don’t have to, but I can. Might as well save a frog or five.
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.
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.
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.
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.
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:
No Bill O’Reilly (Not even an option because I’m poor and don’t have cable but still)
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.
All dogs allowed! In fact, no humans without dogs.
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.
Good News! I woke up yesterday totally healed. I have loads of energy and no pain at all. I threw out all my pills and I’ve signed up for a marathon and begin full-time work next week! Haha. Just kidding. But that would be cool wouldn’t it? I’d write my final blog post: “Well, I’m all better now. Peace suckers!!!!”
Last week I put out a call to the master of the Universe with a very modern hope that he reads blogs, and specifically mine. Well it appears, he does. Or he did. After a really tough couple of weeks with bone crushing fatigue and other relentless symptoms, I woke up on Monday…lighter. My weakness seemed to have lifted overnight and I felt energy that I hadn’t felt in a long time. It was bizarre. I didn’t think too hard about it fearing if I did it would somehow leave. On good days you just count your blessings and then you get a few things done that have gone undone andoverduewhile you were busy sleeping, living under a rock. Or covers. You get it.
I was surprised and deeply moved when I looked at the blog on Monday to see so many people had rallied in my corner, sending positive thoughts and prayers. Many of them perfect strangers. My mom had also written an email to family and friends asking for some divine help, as nothing on “this side” was really working. I was again taken back when I signed onto Facebook to see people gathering troops in prayer groups and the like to pray for me…a sick girl who asked for a little relief. My cousin Cindy asked her “prayer warriors” to come together and see if they couldn’t “lighten her load.” On Monday that is exactly what it felt like physically; like my load had been lightened. That heaviness I had been carrying around, gone. Once again, perfect strangers wrote to say they had been praying for me, many of them offering beautiful and supportive encouragement, assuring me I would get through this. People emailed my mom back all with truly inspiring and beautiful things to say, some as succinct as “Hang on, you’ll get through it.” As I read I cried, overcome by gratitude. But more importantly I believed what people said. I was assured I’d see the other side. With each message I felt a swelling warmth in my chest. Suddenly it struck me that the miracle was not that I woke up basically symptom free on Monday. It was how quickly humanity had come together-friends, family and strangers–with powerful intentions, love, support, and healing thoughts for a girl who some had never even met. It reminded me that we are in this together. We are not each one life, but an interconnected string of lives, and that when we assemble for good cause we are capable of incredible things. When one of us is pain, we all feel it somehow. When one of us overcomes, we all win. And maybe most importantly, when one of us strengthens and expands her consciousness, all the worlds consciousness is raised. We all evolve.
I laugh because in my blog I asked God for one day. Just one day of relief. Well, I was given two. By Tuesday night I felt the heaviness start to come back. My muscles weakened and my familiar sick disposition descended on me. I know that on the outside it seems unfair. Why give her two days? Why not give her the rest of her life? And if God were a genie and life were a two-hour movie, that’s probably how it would work. But we are living in the midst of eternity here–our lifetimes in that context are a flash, but each one brings an invaluable meaning to the whole. The lessons we learn often take a whole lifetime to get perfect, but each contributes a small piece to the universal puzzle. Anyway, in my blog I sadly theorized that maybe I was forgotten about. My symtom-free two days reminded me ever so gently that no, I was not forgotten. This is just the work I have to do right now. A lot of it from bed. Seemingly on the outskirts of the high-paced world, the 9-5 jobs, security or fortune or fame. But just because you live a lot of your life in solitude does not mean you’re alone. Just because you don’t wear fancy dresses and attend important events doesn’t make your life’s work or contribution any less important. We all have very individual paths and under closer examination the design reveals itself as perfect. When I consider that my passion is and has always been writing, something that was absolutely untouched by the illness except that it gave me my platform to begin, there’s no question that there is a higher intelligence who’s job isn’t easy either. I doubt the creator likes to see his masterpieces suffer, but that’s the difference between us and him; he can see the finish line and we can’t.
To keep living takes a massive amount of trust on our part, especially in the midst of pain and hardship. But it’s that solid trust inside me that tells me to keep going. That’s what the voice is grounded in; trust in the grand design. That this is the work I have to do right now in order to become whole, to evolve, and to find inner peace. I often fantasize about a life that I don’t have. One where I wear pretty dresses and attend charity dinners and I charm people with gracefully told jokes and stories. “Tell us another one Mary! You’re the greatest story-teller ever!” they all yell.
Haha. I have no idea why that’s what I fantasize about, but it is. And maybe one day I will dress up and I will do those things at a party–but for now I need to be where I am and remember it won’t always be this way. Remind myself that I still have access to life’s greatest treasures whether I’m in my grandpa’s pajamas or in a dress at a fancy party: Love, passion, friendship, community, creativity and hope–they’re all still there. I am still young relatively and I’m still figuring it all out. I don’t know exactly what I believe in, I just know that after last week, I believe.
And I hope you do too, because you were very much a part of it.
I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.
Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.
It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.
I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.
Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.
When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.
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’ve been hanging out with a lot of trees lately. I take Monty on walks in the hills behind our apartment. It’s where we hear the coyotes howl at night. I don’t know where they go during the day. The more I’m around the trees the more picturesque they become. Suddenly I find myself staring at one tree for a really long time. It’s just standing there, its leaves making gentle sounds, and I feel captivated like I’m watching some kind of brilliant theatre. It’s just a tree! But hang out long enough with them, and they share a little wisdom. I started photographing them on my phone because…I felt like it. And my phone is more like a camera with phone capabilities.
When I was a kid I used to think that wind was caused by trees. In fact I may have thought that up to an unforgivable age, but science was never my strong suit. But in my simple brain, since when it was windy I would hear the rustling of branches and leaves, I equated wind with tress. Finally during a dead, wintery day in Colorado, the cold blew against my face and I looked around at the dried up trees around me. There were no leaves rustling, the dried skeletal branches cracked, and it was clear that wind came from somewhere else. Currents cause wind, which in turn rustles the leaves. The real culprit was something invisible yet immensely powerful. So yesterday I sat in the sun and listened to the leaves rustle while Monty chewed a tennis ball to bits. I watched as an invisible current moved through everything and it struck me why I thought the way I did about wind as a kid. It also had me thinking about human beings and our respective passions and purposes. When you’re really excited about something, whether its writing or painting or singing or chemistry…it doesn’t really matter what…there’s something greater moving through you and guiding the art form. In fact I think that’s one way to define genius, or greatness or expertise– opening oneself enough to allow something invisible and quiet to move through you, leaving either art or authenticity in its path, and each time raising the bar. I don’t see being creative as only limited to the arts. I think there are creative ways to do math, and practice politics, and learn history. There are also creative ways to love someone, dress yourself, and give gifts. It hit me there under the sun, that we human beings are the trees. The creative and appeasing truth is the current, and individuals are just the rustling leaves making the noise.
“Art is the lie that enables us to realize the truth.” -Picasso
Good morning world! Guess who’s up at 7 am?! I haven’t been up this early and actually felt alive in a long time. I woke up in pain but I wasn’t weak like I’ve been and the best part was this; I woke up just in time for the sunrise. It’s funny that such a phenomenal event like that happens every, single, day, and how seldom we actually see it. Or stop to watch it. My immobility in the last few weeks has left me observing the worlds tiny gifts that I didn’t used to see before. Like yesterday I watched a spider web glisten in the sun and was like whoa, that’s beautiful dude! Because my life has become so contained, I’ve been seeing the small things surrounding me, and suddenly they seem just as big as the things I used to strive for- independence, health, conquering the world. Those kinds of things. It reminded me of something Mark Nepo said in an interview that I wrote in my notebook. He was talking about finding “the special” in everyday life and how important that is to happiness. “Become easily pleased. Find what’s special in everything. Everything glows. There are more distractions and distortions now than ever. The challenge is how do we balance–how do we hold at bay all the voices that are forever crowding in, and hear the voice of own soul.” The answer, he said, lies in stillness, reflection, and “spiritual aerobics.” I liked hearing that. And I find the special little things often outside when I’m on a walk with Monty. A fallen birds nest or a bright red door or marshmallow clouds, a little kid with a suitcase or an old man with grocery bags. Whatever it is, it’s easy to miss. But I notice that when I’m quiet I am surrounded by extraordinary things. You don’t have to travel across the world to see incredible things. It’s more about a change in perception than location. We have a tendency to think happiness is “just over there,” beyond the next hurdle, over the fence. I keep hearing that happiness is something already within you and I see now, it’s just about accessing it, activating it. It’s gettin deep in here yall!
This week marked the beginning of a new project: GOOD NEWS IN PLAID! Woo woo. This project started pretty unorganized and is still coming together. But I have to say, I feel better after I report good news. I like hearing other people’s good news. And I enjoy avoiding politics, terrorism, disease, and murder. Who knew? In the beginning I was like why am I doing this? I don’t even feel like moving! But then I was like, wait, I have nothing else to do. I might as well report good news. And it’s something I can do from bed, or the floor, or the couch. So I’ve been recording myself (and Monty) everyday reporting a few pieces of positive news from my own life and other people’s. Yesterday, 32 people left comments reporting their good news on Facebook, so I recorded myself reading everyone’s little bits of good news..without reading through them first. Then I showed it to my sister and realized it was a 10 minute long video and one of the more awkward things you’ve ever seen in your life. So she recommended I edit it down to like 5 bits of good news instead which is probably a better idea. I try to disregard the ridiculous parts of the video where I look and sound like a moron–like when I ask “You can make your own cheese??” (You’ll see) My sister laughed for a good ten minutes at me for that one. But it’s just about positive energy and good news, so I’m sticking with it. It’s also really hard to find the music you want on YouTube, so this video ends super cheesy and the music sounds like something that would come at the end of that movie Precious or on a Cadillac commercial. But anyway, Keep the good news coming…I love hearing it and reporting it, and I think everyone agrees that the world could always use more good news. Below is segment 2 and 4. You can see all the videos at goodnewsinplaid.wordpress.com. I’ll continue to post 1 a day.
In other news, I started seeing two new doctors. One is a Chinese doctor who practices traditional Chinese medicine and is the most delightful man you’ve ever met in your life. Doctor Xu (pronounced Sue)It’s a whole different approach to health, but a lot of it makes sense to me. It seems to work with your body instead of just supplementing pills for symptomatic relief. And since this illness manifests itself in entire body system malfunctions, it feels like a good approach to take. After looking at my tongue and nails and asking a few questions he said “OK, I fix you. Two or three months. I fix you.” He makes his own chinese herbs and creates a tea out of them based on getting your body back in balance and “lighting your internal flame.” Haha. Whatever that means, I’m up for it. He also helped my sister out a lot when she was experiencing chronic migraines and often sick after college. So now he gets to try to heal her sister. His Chinese herb teas taste like what I imagine a bird’s nest ground up in a blender with some carrots thrown in would taste like. But if it means getting better, I’ll try anything. He also does acupuncture which I really like and cupping which feels awesome. But it leaves you looking like you’ve been attacked by a circle monster. See?
The other doctor I am seeing is a Russian woman who practices naturpathic medicine. She believes that I didn’t get rid of the lyme disease on the first go-round and so I am still fighting that with “co-infections” and that’s most likely why I feel like I’m dying. :) Anyway, she has a plan, and Dr. Xu has a plan, and I’m trying it all. Open to anything. Maybe with a combination of Western, Eastern, and Russian Naturpathic medicine, I will get to feeling like a human being again. As my mom says, “All the kings horses and all the kings men will put Humptey Dumptey back together again.” It all sounds good to me.
I came across these words in the middle of the night last week when I was really sick and couldn’t sleep. I was feeling scared and anxious–of what I wasn’t exactly sure, but there was some sort of doom over my head and I didn’t know how to relieve it. This passage helped. Today my mom read to me the same excerpt out loud while discussing life and love and hardship. I figure twice in seven days is enough of a sign for me to pay attention to the words, so I thought I would share them here as well. They are written by the mystic Joseph Cambpell.
The loss of a love and the pain of a broken relationship is an overload of projection. That’s all it is. In youth, your whole life is this wonderful dream that “This is It”: this relationship is the fulfillment of my fantasy and I can’t imagine life otherwise. No argument can quell this feeling of total projection, of everything in the other one. I guess we can all recall an episode of an adolescent relationship that seemed to be the all-in-all and then went to pieces for some reason.
When a relationship breaks off, it takes a person a little while to settle and find a new commitment. It’s after the breakoff, when there is no new commitment and life has been divested of all of its potentials, that this painful reaction takes place. For some people this is a dangerous period.
The psyche knows how to heal, but it hurts. Sometimes the healing hurts more than the initial injury, but if you can survive it, you’ll be stronger, because you’ve found a larger base. Every commitment is a narrowing and when that commitment fails, you have to get back to a larger base and have the strength to hold to it.
Nietzsche was the one who did the job for me. At a certain moment in his life, the idea came to him of what he called “the love of your fate.” Whatever your fate is, whatever the hell happens you say, “This is what I need.” It may look like a wreck, but go at it as though it were an opportunity, a challenge. If you bring love to that moment – not discouragement – you will find the strength is there. Any disaster you can survive is an improvement in your character, your stature, and your life. What a privilege! This is when the spontaneity of your own nature will have a chance to flow.
Then, when looking back at your life, you will see that the moments which seemed to be great failures followed by wreckage were the incidents that shaped the life you have now. You’ll see that this is really true. Nothing that can happen to you is not positive. Even though it looks and feels at the moment like a negative crisis, it is not. The crisis throws you back, and when you are required to exhibit strength, it comes.
The dark night of the soul
comes just before revelation.
When everything is lost,
and all seems darkness,
then comes the new life
and all that is needed.
Even when you don’t feel like it. Even when it hurts. When it would be not just easier or more convenient to say no, but less painful, less exhausting, perhaps even, the healthier option– even then, sometimes, you gotta say yes.
As my role as the “sick girl” has slowly developed over the past few years, I’ve noticed how often and how easily I’ve begun to say no to things. And that’s mostly for the sake of my livelihood. I don’t have the endurance to do the things I once did, nor do I have the resilience to bounce back if I overstep the boundary. There’s an invisible line with illnesses like this; one that not even the sick person can see, and it doesn’t make a sound when you overstep. Not until later, when it’s too late to take anything back. So, you pay for it. And you start to feel your way through it, constantly guessing whether you’ve gone too far or done too much. It’s about as easy as pin the tail on the donkey in the dark, with booze. But this solid body of mine, as broken as it is, it always lets me know if I’ve infringed on that boundary. Always.
The last few days have been crappy. Not Colorado crash crappy, but, crappy. There have been a few 26 and 27 pills a day, days. Which I’m learning how to be OK with. Even sick days, where the most you do is brush your teeth, are OK too. They have to be. It’s interesting what this illness turns you into; a spectator where you once a participant. I often feel the quick pace of the world spinning and everyone rushing by with their busy lives, and then there’s me…just kind of, standing lying there. I miss being busy. There’s something comfortable about always having something to do, someone to see; there’s an importance about it. I notice now how different my to-do lists are verses my to-do lists a few years ago. 1. Wash clothes. 2. Pick up prescriptions. 3. Buy new notebook!
I’ve begun examining my life a little closer lately, and am putting a lot of thought into how I spend my time. It’s really crazy to think that I can sort of do what I want given that I don’t have a full-time job or any REAL responsibility besides my health and my dog Monty. (Although I don’t know, one might call my constant correspondence with the Walgreens pharmacy a full-time job in and of itself. For real though.) The thing is, since I can’t hold a full-time job right now, I don’t have any income. So that’s the first damper on “Doing what I want.” The second damper is, duh, I’m incapacitated most of the time. If I had my way, I’d be going, and doing, and meeting, luncheoning, and painting and creating and…you get it. Saying YES a lot. I’d be one of those busy people with alphabetized spice racks and really organized DVD collections. And I’d run half marathons for fun! BLECH. Scuse me, I just puked thinking about running a half marathon. Anyway, that’s not my life. Most of the time I feel too exhausted for showers and everything I buy at this point is on someone else’s dime…so it’s really teaching me a lesson in humility, appreciation, and grace. Every night I pray that I will be able to pay back everyone who has been so gracious in taking care of me. And I solemnly believe that day will come. One day.
In the meantime, I have a lot of something that many people don’t: free time. And whether I’m sick or not, it’s up to me how I spend my time. I find myself feeling bad a lot about not having a full-time job and not being able to support myself. I was used to having a job and independence define me. But, I think that’s pride and the ego getting the best of me and I constantly have to remind myself that if I could, I would. But right now, it’s not where I am. So how about instead of feeling shitty on top of feeling shitty, I try to make better use of my time. I decided I’m going to read as much as I can, write as much as I can, and start looking at this free time as a gift instead of something that “happened to me.” A lot of people would love time off from work, to be a spectator, to read for the sake of reading. To be honest, not having something to do is harder than you’d think. We’re kind of a culture that tends to define ourselves by our work. I guess I’m redefining both my purpose and the definition of that word. Is it still considered work if you’re not getting paid?
This week has been rough health wise, but today I was sick and tired of being sick and tired more than I was actually sick and tired. SO, I said, screw it. I took a bath, got dressed, and went to the park with Monty. Not because I felt like it, not because it felt good even, but because I needed to get out. Sometimes I do the things I would do if I weren’t sick, just for a little while. I can go outside. I can throw a ball for Monty and finish reading my book. I felt shitty the whole time, but mentally I needed it. Chances are, I’ll pay for it tomorrow. But it’s one of those weeks where I felt like I would be paying for something tomorrow whether or not I did anything today, so I went for it. Every once in a while, it’s nice to feel like things are on my terms. It’s my way of giving the illness the middle finger. And you know what? It felt good! Screw you sickness. Today, Mary Gelpi SAID YES.
OK so maybe I am really over-glorifying my little trip to the park. But, I have to keep myself in check. It would be really easy for me to say no to anything that required leaving the house or socializing with people. I can feel the crotchety 80-year-old inside of me getting way too comfortable. I remind myself that I am 28. I need to stop being so opposed to meeting new people. (Dude, I hate meeting people. Also, I’m terrible at it.) I have to be OK with going places sometimes, because I think our souls like a change of scenery. I need to not automatically say no, even though my experience gives me that tendency. Sometimes I will pay for it, yes. But there’s a price to be paid for constantly saying no, too. So I’ve got to find the middle. I’m still young, and I need to start acting my age. Before I know it I’ll be drinking Ensure and wearing Oopse I Crapped My Pants. And then meeting people will be REALLY hard!
You know what else I did today? Bought a new notebook. That’s my favorite thing to buy. I’m very particular when it comes to notebooks. It takes me a while to pick one out and I sit there in front of the shelf of books running my fingers over pages, opening and closing it, taking measurements and looking like a crazy all the while, but I like to take my time. I can’t have things like paper texture or wide rule lines interfering with my writing. Anyway, I found a good one after going back and forth between two for 10 minutes. This is typically what I do when I buy anything. I’m very indecisive. So I’ll buy one, and then go home and think about the other. It’s terrible. Anyway, I’m trying to work on that. So I’m going to do some writing. And then some reading. And then I’ll do it again tomorrow I guess, in a park, and throw the stick for Monty. Because that’s what my life is right now, and it won’t always be that way. Maybe it’s not about being important. Maybe it’s just about being.
Health, Happiness, Yes.
*To all my family and homies in New Orleans, my thoughts are with yall. Although I’m pretty sure most of you are drunk and having an OK time. Stay safe.
I think my favorite present to both give and receive is a book. And not an e-book, not a kindle or a tablet thingamajiggy. A real, tangible book with pages to flip through and words that you underline and notes in the margin that you come back to later. There is something necessarily palpable about a book for me. Maybe I just really like turning pages, but I don’t think I’ll ever make the switch to electronic literature. I know it costs us trees, but I kind of feel like a tree would be happy to be a book. If only trees could talk. OK, anyway, I received a book from my mom for my birthday, and I’ve been lost in it for the last 4 days. I kept telling myself I needed to write, but my urge to read was stronger. I had to finish it before I could do anything else. I think it may be one of the most important books I’ve read as of yet.
“The Untethered Soul” is written by Michael Singer and I’d never heard of it or him until I began reading. The book is 181 pages but is densely written and covers everything from consciousness to identity to happiness to God to death to Christianity to the Tao. I really don’t know how he combined all of these topics so succinctly and covered them with such perfect simplicity, but he did, and it all made perfect sense. Every word. Sometimes I’d read a paragraph over and over, not because I didn’t understand, but because it felt so good to read the words. It was like light would suddenly pour in the room, and with each page (each TANGIBLE page) I felt more clarity, maybe even more happiness. At least more awareness of it. There is such a wide variety of topics he covers and methods associated with them, but he ties them all together seamlessly to teach one huge and vital lesson; to know yourself, and to find bliss. It will be difficult to summarize the whole thing up on just one page..this may need to be a two parter. So I’ll just cover a few topics that really captured me.To begin with, you can’t fix the world. You can’t fix other people, and you shouldn’t try. But you can become the purist and most open version of your Self, and that is your gift to the world. You will be the most successful and biggest help to humanity by knowing yourself truly, and waking up–becoming conscious. So long as you are unconscious, reacting to external factors, hiding behind fears and anxieties, letting that voice in your head dictate important matters, you cannot be of help to the world. You are stuck in your mind, and so you can’t go any further or higher up than that. Not until you wake up.
Like Tolle, Singer writes pretty extensively about how to answer the question “Who am I?” …a question I constantly ponder but feel my answer always comes up short. I am Mary Gelpi. Well no, that’s a label given to me by my parents. Take it away and I’m still here. Who am I? Who is the Self? It was more poignant and enlightening to hear him explain who we are not. Some we’ve been over before.Ready? You are not your thoughts. You are not your emotions. You are not the things that happened to you. You are not a gender role. You’re not even your personality. And here’s the big one: You are not that voice in your head. In fact the journey to discovering your self (which is who you are) involves the attempt to eliminate that voice. In other words: telling it to SHUT. UP. And in the meantime if you can’t get it to, DON’T LISTEN TO IT. For the love of GOD don’t listen to it. Think how many times that voice in your head has been wrong…a lot. But we continue to reach out to it for advice and guidance as though it were an intelligent shrink. It’s not, it’s noise. Just so we’re clear, I’m not talking about voices plural in your head. That’s another disorder altogether and we don’t have time for it. I’m talking about the voice in your head that is constantly chattering. If you stop reading this right now and look around the room, just wait a few seconds and listen. It will begin talking. About anything. Stupid things. Funny things. Memories. To -Do lists. It’s noise. It’s a lot of noise that isn’t really propelling you in any direction on your mission. This attempt was among the original purposes of things like meditation and yoga. It wasn’t to pray or to exercise–it was to find inner stillness, the center. The center is where “You” reside. Behind the chatter, judgments, and noise is your soul or spirit, or whatever you’re comfortable calling it. It’s quiet there. It’s the part that doesn’t die. It’s the center of your consciousness, or what Zukav called The Seat of the Soul. (Also, another awesome book) So this is how the book begins; with the search for the self and a map of where to go to find it. Once you’re able to pull back the curtains on all the things that don’t define you, you begin to feel and hear the real you. Your higher self. Perhaps he puts it most accurately with this definition: the simple awareness of being aware. Or..You are not the thinking mid; you are aware of the thinking mind.
“When you contemplate the nature of Self, you are meditating. That is why meditation is the highest state. It is the return to the root of your being, the simple awareness of being aware. Once you become conscious of the consciousness itself, you attain a totally different state. You are now aware of who you are. You have become an awakened being. It’s really just the most natural thing in the world. Here I am. Here I always was. It’s like you have been on the couch watching TV, but you were so totally immersed in the show that you forgot where you were. Someone shook you, and now you’re back to the awareness that you’re sitting on the couch watching TV. Nothing else changed. You simply stopped projecting your sense of self onto that particular object of consciousness. You woke up. That is spirituality. That is the nature of Self. That is who you are.”
There was one chapter that I re-read a few times, because it really challenged my notion of happiness. It asked this question, which I find myself constantly asking: Is happiness a choice? I have always believed that we are susceptible to our circumstances, therefore happiness isn’t really a choice because we aren’t in control. We can’t help it when bad things happen. But Singer absolutely disagreed with that, and I’m pretty sure he beat me. Just because we aren’t in total control doesn’t mean our happiness isn’t in our hands. If our happiness isn’t up to us, who is it up to? Other people? Circumstance? Conditions? No wonder we’re not happy! You can’t rely on anything or anyone else to cause your experience of happiness. It is entirely up to you. If you make the commitment to be happy, it is to be unconditionally happy. But, that means acceptance of the present. That means erasing your version of what you think your life needs to look like in order for you to be happy. That’s something a lot of people don’t want to give up.
I know what you’re thinking: What if my family dies in a plane crash? What if a bird shits on my head on the way to work? I can’t help that! Of course there will be challenging events in your life, you already know that or may have already experienced them. It doesn’t mean you don’t grieve appropriately and process the hard times. But it also doesn’t mean that you stop, that you can’t be happy again and continue to live a beautiful life. (Just ask my mom, she was widowed twice, but has once again found happiness.) That’s part of the commitment. You have to accept what happens in the present, deal with it accordingly, and release. Keep going. There’s no hanging on to the past allowed. It will never change by you clinging. There’s no cringing about tomorrow allowed either. You’ll deal with tomorrow when tomorrow comes. And think about it. Does you reacting and getting upset and yelling change the fact that a bird shit on your head? No, it doesn’t. Clearly our reactions are not only silly, they’re unintelligent. They serve no purpose. They’re just noise.
Your definitions of desirable and undesirable, good and bad, all come about because you have defined how things need to be in order for you to be okay. We all know we’re doing this, but nobody questions it. We think we’re supposed to figure out how life should be, and then make it that way. Only someone who looks deeper, and questions why we need the events of life to be a particular way, will question this assumption. How did we come up with the notion that life is not okay just the way it is, or that it won’t be okay the way it will be? Who said that the way life naturally unfolds is not all right?
This is still a challenging notion for me to process, but I know it’s right. This is not to say that making unconditional happiness your mission is easy–it isn’t. It’s probably the hardest work you’ll do. But I’ve decided to take this mission on. I certainly have the time, don’t I? Maybe we all do. But we fill it up with a lot of stuff. A lot of Kardashians and O’Reilly Factor and arguments and anger and work and chaos and noise. I think it’s time to slow down. Time to go IN, not out, and find that little nook where our soul is, and try to please it. What more important work could there be? Chopra says that this is a recreational universe and that we were meant to have fun here. We weren’t meant to suffer! So I think it’s time to play. Today is August 22nd. It’s my dad’s death day. Death birthday? I wonder if they celebrate the day you die in Heaven the way we celebrate birthdays here. Anyway, my dad was one of the happiest people I knew, and that’s what everyone else had to say about him–How positive and kind he was. This book reminded me of him and his constant disposition of joy, happiness, and love. I’m going to start my work toward consciousness and inner peace with him in mind and this book as a guide, or at least a solid starting place. I highly recommend The Untethered Soul if you’ve been searching for a deeper purpose or listening for a higher calling and need a little help getting started. This is a really good road map to begin with.
My favorite line from the book: It is actually possible to never have another problem for the rest of your life.
Health, Happiness, and Real, Tangible Books.
*My favorite underlined phrases from the book. :)
What it means to live spiritually is to not participate in this struggle. It means that the events that happen in the moment belong to the moment. They don’t belong to you.
The only way to inner freedom is through the one that watches the self.
It’s bad enough that your happiness is conditional upon your own behavior. When you start making it conditional upon other people’s behavior, you’re in serious trouble.
It is not life’s events that are causing problems or stress. It is your resistance to life’s events that are causing problems or stress.
If you want to understand stress, begin by realizing that you carry around with you your own set of preconceived notions of how things should be.
Imagine if you used relationships to get to know other people, rather than to satisfy what is blocked inside of you.
When a person is dealing with their own fears, anxieties, and desires, how much energy is left for dealing with what’s actually happening?
The truth is, everything will be okay as soon as you are okay with everything. And that’s the only time everything will be okay.