Today Is Wednesday.

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

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

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

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

Mastery of Life is the Opposite of Control. -Tolle

Health, Happiness, Wednesday.

The Only Gift to Give

(me)

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

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

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

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

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

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

Love,

Mary (and Monty)

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

Health and Happiness and Happy Mothers Day!

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

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

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

Baby Talk.

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

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

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

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

It’s so easy!

It really is quite easy. Cheerio!

Someone make it stop.

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

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

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

Health, Happiness, Babies.

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.

Back To New Orleans.

Excuse the drabness of this post, I’m on day 10 of a headache and sometimes it makes the words come out funny. Or boring. But the show must go on! Anyway, I have some news. I’m pregnant. Just kidding. I just keep dreaming that I am. It’s pretty stressful. Because in the dreams I’m like wait, I take waaay too many pills to effectively grow a fetus inside of me. The rest of the dream is spent in panic mode wondering how to be this sick and how also to care for a child. Sick girl fairy tales! So, the real news.

First, I’m back in New Orleans. Monty and I both are. In fact I’m writing from a courtyard at a friend’s apartment in the French Quarter now. It’s weird to think I’ve been gone for nearly nine months. I don’t know if that’s a thing about the South or a thing about Home, but it never truly feels you’ve been away for as long as you have. As soon as the humidity grabs you at Louis Armstrong Airport, you pick up right wherever you left off. Changed or unchanged.

My original plan was to just spend the spring here. New Orleans has about the shittiest climate of any American city, but April and October are magic. It’s perfect. And when you’re here on a day like today, you wonder why anyone would ever ever leave the place. Plenty of artists have depicted the perfection of this city a million ways better than and before me, so I hesitate to try. I can only describe it as magic on days like this. Of course outside those couple of months, is a city ill-equipped for a few weeks of penetrating cold, followed by relentlessly rainy or relentlessly hot or relentlessly both. In those times it’s easy to see why people would leave. And yet few seem to. The roots here are deep, and I love how many love stories there are between person and place. I’ve lived in different cities over the years and have more than one place to call home, but there is reserved a very special spot for New Orleans. It’s like that boyfriend you never quite get over.

The original plan was to come for my friend’s wedding and spend a month reacquainting myself with the city I’ve been missing. But in February my parents made me an offer. They knew how hard it had been for me to give up having my own place two years ago. Beyond not having the money to afford my own place, I don’t really have the health to live on my own either. It’s a chunk out of the ego to come to terms with things like that. My mom was constantly driving over to pick me up and bring me home. It’s long been a difficult truth for me to accept that I can’t live on my own. I have always loved solitude, and basically since moving out of my apartment that March a few years ago, I haven’t been able to really find it. That all changed in February when my parents told me they were willing to let me and Monty move into their pool house. Because that’s what all mature 28 year olds do; they live in their parents pool house. My mom explained that this way, at times when I’m too sick to be on my own, they’ll be on the property to help. And for the rest of the time, I’ll have a place to call all mine. 

Since that morning, even the thought of their offer has brought me ease. One of the hardest feelings in the world is, in a word: stuck. Stuck with somebody. With something. In someones house. Stuck in a crap situation. One where you don’t see an out. I have confronted this feeling many times and it can feel crushing. It’s often just the wrong set of eyes to be looking at a situation. Many times when we feel stuck we’re not always seeing the whole picture, or the truth of what we’re surrounded with. But I must admit, the feeling has pervaded over and over and I think it stems from a lack of options and a lack of power on my part. When you don’t have health and you don’t have money, you’re not left with much to offer the world. You’re sort of just relying on the pure heart of people around you, because if I’m honest, for everything they do for me, I have little to offer in return. And that has been the truth of my situation for a few years now. So many times–relying on the goodness of people to do things for me, knowing full well I most likely won’t be able to pay back the favor, or the funds, or a house. It’s been a lesson in humility to say the least. How does that quote go? The true character of a man can be measured by how he treats someone who can do him no good. Something like that. I think of those words all the time. I watch people endlessly help to make sure my needs are met, and all I can do is go to bed at night with an immense sense of gratitude and no certainty that I’ll ever be capable of repaying the favor. I promise myself and the universe, if I’m ever well again and if I ever have money, I will use them both graciously for good.

Tomorrow I’ll start the move into my new place and fantasize about all the wonderful things that may happen to me and my life when I’m in it. Maybe it’s the house where I get better. Where all my wildest dreams come true. Where I find my happy ending. Maybe it’ll just be a nice place to write and lay around and be sick. Go my own pace. Either way, it has a pool, so Monty will be happy, and that will make me happy. I also really enjoy being under water, so there’s that too. I’ve got some projects in mind to begin working on now that I have some space to carry them out in, so at least there will be time and room for all the ideas I’ve been scribbling around in my library of notebooks. Before I go, I’ll leave you with a few photographs of the magic city in Springtime. Everyone needs a pretty day in New Orleans. It does the soul some good.

Health, Happiness, Home.

New Orleans Wedding.

Nola Windows. They’re the best.

Life In Color.

Eating crawfish. Once you know, you know.

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

Believe in Miracles? Believe This.

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 and overdue while 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.

That Mary Is One Hell of a Story Teller!!

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.

Health, Happiness, Miracles.