I’m sitting upstairs in my new bedroom in our new house. After eight months in an apartment complex I called the “California Projects” for many reasons, most recently a murder in the apartment above us, it feels good to be in a house. A real house. There’s a yard and a small playground. My room has a bay window; something I fantasized about having as a child, and now at 28, my window dreams came true. There are men downstairs installing the floors and speaking in Spanish. In typical white girl fashion, I say Hola! and ¿Cómo estás?and that is all I know so that is the end of the conversation. They are nice. I wish I could creep on their conversations, but I chose French in college which, outside of my semester in France, I never ever speak. Except for my dreams and a French dude I sat next to on the plane last time I flew.
The people who lived here before us hadn’t paid their house note in two years. They are one of thousands among Southern California and America whose eyes were bigger than their wallets. Their inability to pay made for a steal on the house but an insane amount of paperwork and complicated buying contingencies. After a lot of back and forthing, Amelie and Keegan got the house, and then tore out all the ugly stuff. Right now we don’t really have a downstairs with floors, or a kitchen or a living room. So I hang out in the yard with Monty and notice that when the old tenants kids were younger they carved their names into the cement on the side of the house. I feel a little bad. I’m sure when they moved in however long ago they figured this would be their house for life. But I guess it’s a lesson thousands of Americans learned these past few years. It makes me afraid of money. Which is fine because I don’t have any.
I mark this move as a symbol of better things to come. The last apartment was both literally and figuratively dark. There was definitely not enough windows and the light that shown in my bedroom came from fluorescent bulbs that burned in the corridor outside my room. Yellow and artificial. I spent my sickest days ever there. On the couch or in my bed. And those steep stairs you had to walk down to get to our place–my God I hated those stairs. Each one I cursed when I walked them and my legs were shaking with weakness. Screw you screw you screw you screw you screw you. All the way to the bottom. Or the top. Didn’t matter, I hated those stairs, and Sunday was the last day I had to walk them. I flipped them off from the car as I drove away from that apartment. In my mind that song “Movin’ On Up” played in my head and I hoped that this literal upgrade would also be the symbolic mark of how all of our lives turned around. How once we moved, everyone got everything they ever wanted. But even I know that’s not how it looks. Still, a girl can dream. Only good things here. Leave all the crappy stuff at the bottom of the stairs or in my old closet with the broken door.
Now we’re in real Suburbia. A three car garage and neighbors that say “Welcome to the Neighborhood!” You can hear kids playing outside and there are minivans and such. It’s a nice street in a nice neighborhood and you don’t have to go down any stairs to get in. Now when my large and loud family visits, there will be room for us- presuming we don’t all spit out a baby in the next nine months. But hey, you never know. Although last time I checked you have to have sex in order to have a kid, so, you know, I’M GOOD THERE. Monty is my one and only, and he’s happy to sleep on the floor. Here’s some pictures from the heart of the burbs. Enjoy.
Health, Happiness, Suburbia
Monty enjoying the new view.Someone loves Taylor.Tiny furniture left behind in our sand box.A neighbors astroturf lawn.
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.
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.
Thanks for the clothes Grandpa!
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’ve finally reemerged out of my latest crash. I’m kind of tired of dedicating words to what being sick is like, so instead I’ll do it with GIF animations. Here’s how it went.
Monday: I tried to get out of bed, but it went something like this.
By Tuesday I was still lifeless and sick, so my mom brought food to me in bed, which went something like this:
By Wednesday I’m like this is crap! I’m going outside to play! Which went like this:
So back to bed I went, like this
Then I woke up like 20 hours later like this:
And then someone with enthusiasm calls and says “Hows it going Mary?!?!” and I respond “Great!!!”
Then after a long day of exhaustion, I try to go to sleep, which goes something like this:
Then alas I get to bed, and when I wake up, my body feels like it’s done this to itself all night…
Being awake feels crappy so I go back to bed, like BYE WORLD!!!
Then I wake up to Bill O’Reilly playing from the living room…
Meanwhile Monty is bored to death with his owner so he decides to go out in the world on his own…
Then finally I wake up with enough energy to get out of bed and be a functional human being!
I’ve attempted to sit down and write multiple times this week but my eyes continue to grow heavy and I fall asleep with the light of the monitor on my face and an incomplete sentence waiting. Most of the family left to their respective homes on Sunday and it appears my body waited for them to leave to go ahead and crash–which is nice of it actually. I made it through Christmas Eve and Day with adequate enough energy and I was really grateful for that. If being sick now is payment for what I experienced with family this Christmas, then it was well worth it. I just love those crazy animals!
Christmas is by far my favorite Holiday. The lights, the soundtrack, a reason to be kind, the eggnog, the food and the family. I treasure it all. Since we spent this Christmas in Colorado, I began praying weeks in advance for a White Christmas; something I haven’t had in many years. It just makes everything that much more “Christmasy.” When I awoke on Christmas Eve, I saw that my prayers were heard. We had every type of snow that day. In the morning it came down softly. By the afternoon it was big, slow flakes. On the way to Mass it was small gusty snow, fast and twirling. I felt like a kid again. And being that we’re Southerners who are rusty in the art of driving in snow, we went about 15 miles per hour on the way to Church, leaving an impromptu parade of backed up traffic behind us. But you can’t get mad about traffic on Christmas Eve– Not in your Sunday Best while the sky is falling. I received more than I asked for; 6 inches to be exact, which is pretty substantial for this town. It continued to snow into the night, revealing a very real White Christmas the next morning. My favorite part was taking Monty on a walk that evening. The night sky orange from the clouds reflecting lights, the atmosphere hollowed; a padded cave where your steps crunching the snow is all you really hear. It almost demands that you stand still, that you look up. There is a tangible quietness to snow and it was a real gift to experience it again.
Monty in the Snow, Night.Yum.
I also really like this time of year because there’s such a sense of hope and possibility with the New Year. On a technical basis, it’s minor. It’s just a change in numbers. A 2 becomes a 3. But for human beings, where space and time matter, it marks an end and a beginning. As the numerical date changes, it’s wise to reflect on the past 365 days and think of what you want the next 365 to look like. Of course, as the mystics would remind us, there is no past or future. A New Years Resolution can only begin and mean something right now. Right now is all there is.
I didn’t make a New Years Resolution specifically, though I love the idea. I reflected on New Years Eve 2010, which I spent at my parents house, and it was Monty who I kissed at midnight. The next few days would involve a heavy crash and a hospital visit and some major contemplation about what to do with my life that I was slowly losing control of to health. I remember that last New Years Eve I thought well, at least the worst year of my life is over. I thought 2011 would be my sickest year, and that I could stuff it far away somewhere. Bury it. Burn it. Just put it out of sight and move on. And then I met 2012. In many ways 2012 ended up being my toughest year. Health-wise it was one of the worst. Emotionally it drained me. Personally it humbled me. You’d think after years of being sick I’d have it all figured it out by now. But I’m still learning. Feeling my way through the dark parts to find meaning, treasuring the good days, and holding out hope that this won’t be my life forever. 2012 was deeply hard, but another way to look at it is this: I survived. I made it. It’s over, but I’m still here. Like Caroline Myss says, “As long as you’re still here, you’ve got purpose.” I may be sickley and often seemingly useless, but I am still here, and I do feel underneath my lifeless body that I still have a lot of work to do. And if most of it comes from bed, so be it.
There’s a few other lessons I’ve learned in 2012 that I’ll take with me into 2013 on my way. Wherever that is.
I’ve learned how to be a house guest: That most people consider themselves clean and organized, and that every person’s definition of those two traits are absolutely different. All in all, people appreciate when you make your bed, so do it whether your hosts do or not.
I’ve learned that old ladies don’t like dogs without leashes.
I’ve learned that violence is not the answer and instead of trying to punch a fly in the face you may benefit from pausing and reflecting instead.
I’ve learned that even if my body is worthless, my mind is not, and it’s still possible to achieve things from a couch, or a bed…in pajamas.
I’ve learned that even if they’re the right thing, breakups hurt. They’re hard. Sometimes it really is time that heals those wounds best.
I’ve learned that every person is fighting a battle. I used to never talk about my issues, or even write in the first person for that matter. Now I have a public blog with everything out on the table and a lot of I, I, I. But most people do not. They keep problems and pain inside, protecting a sore spot somewhere, which is important to remember when they’re flipping you off in traffic or cursing your name from across the street. We all have issues, and it’s all OK. In my darkest times I’ve found reassurance that no one is alone in their pain.
I’ve learned that the best doctor is Dr. Mom.
I’ve begun to learn to swallow my pride. To accept help with grace. To admit when I can’t do it on my own. And that there is much more freedom than pain in those moments. There is real ease in surrender.
I’ve learned that regardless of the question, the answer is protein.
And that out of all 25 pills, nothing makes me feel better than laughter. Mine and others. For real.
I’ll take all of these with me. Into the future, to a galaxy far far away. Or to whatever state I end up in next. I don’t know what 2013 has in store for me. So far, I’ve basically spent it in bed. But that’s OK too. Because regardless of what 2013 brings to the table, I promise to keep on laughing, to keep on joking, and to keep making fun of the tragedy that can be life. In almost every punch life throws, we can laugh or we can cry, and in my experience, it’s just way more fun to laugh at it all. In short, I’ll keep taking 25 pills and making lemonade…or something like that. Happy 2013 yall.
It is a dreary, rainy day in California today. I love it! It was this way yesterday too. I had been feeling a little home sick lately and now suddenly I have damp Louisiana weather–the in between cold, lonely drizzle outside. It’s superb. It’s so anti-California. Feels like home to me.
When I stepped out into the rain for our morning walk, I was expecting to make it quick since that what’s you do on days like this-stay indoors. But Monty seemed so happy frolicking around and it felt pretty good hanging around out there, that I just let him get wet and play in the mud and people laughed as they walked by. I’ve always let Monty get messy if he really wants to. There’s no real problem with it..dirt washes off! So we got dirty.
Mud.
Health-wise I have been improving since the whole too weak to move crash, slowly but surely. My naturpath doctor received some blood work two weeks ago that confirmed I still have lyme disease, as well as two co-infections (one is Bartonella, aka as cat scratch fever..what the hay?!) and one parasite in my gut. All right!! This is good news though because they were definitive results and allowed us to move forward with a treatment plan. Since she is a naturpath she doesn’t use antibiotics to treat things, so combating the lyme this go around will be a little more complex. I could go into the details but I don’t even understand them entirely and it’s pretty boring anyway. It’s a crazy coincidence that my doctor studied a while with one of the top lyme specialists in Northern California, so we’ve got that working for us. If we can’t get it under control with her care, she’ll send me to him.
I forgot to mention that part of seeing the naturpath is going on a major detox where you avoid gluten, dairy, corn and you drink this protein shake all the time which actually tastes decent! After 6 years of convincing me to go gluten-free, my sister can now rest easy knowing I’ve made the step. For now anyway :) The diet actually isn’t so difficult to adhere to but that’s because my sister keeps the house stocked with stuff I can eat and pretty much brings me dinner every night. You may ask yourself, what do you eat? The answer is yams. I eat a lot of yams. Kidding. Well, I did eat a lot of yams in the beginning. But the point is to mostly eat fruits, vegetables, and a lot of protein. So that’s what I’ve been doing. Yesterday I ate sixteen clementines. For real. I can only eat at least four at a time. They’re just so small and addicting. I don’t know that I’ve been able to tell exactly what difference the diet is making since there are so many variables right now, but I do know it’s nice to feel good about what goes into your body. I admit I never felt great mentally after stuffing my face with fudge sickles at 2 am. Mmmm fudge sickles. That sounds so good right now.
Since I’m pretty obsessed with the Holidays and Christmas in particular, I told Amelie and Keegan that since I’m a sick kid they have to grant me a wish like the Make-A-Wish-Foundation advertises in the commercials. (On top of housing, feeding, and caring for me, of course.) My wish was for a real Christmas tree and the day after Thanksgiving, we did it! She’s a real beauty. If she had a name it would be Anastasia. We’ll hang small milk bones on the bottom so that Monty will tug at those and not the real ornaments. There’s nothing like the smell of a real Christmas tree. It’s like Winter, Happiness, Warmth and Love all wrapped up in a smell. On top of that I’ll be blaring Christmas jams and watching Elf on repeat which my brother-in-law is really excited about. What can I say, I’ve always loved Christmas.
Apart from yuletide, I’ve been watching Woody Allen movies, taking pictures of people’s windows, and writing things late night I still don’t entirely understand. I still need to watch Crimes and Misdemeanors which I hear is one of the best..but Annie Hall is so ridiculously lovable it’s been hard to forget. I loved Manhattan too but it made me nostalgic for Annie Hall. I liked Melinda and Melinda a lot and also Alice. Husbands and Wives may have been a little too neurotic, and Midnight in Paris was the best! I really loved that one, and Owen Wilson’s character. Too good. Tonight I’ll watch Play It Again, Sam and then maybe I’ll get back into reading. Somehow I kind of stopped. Anyhow, I keep taking Monty on walks around our complex and I love seeing people’s windows from the outside. The blinds are always closed but people put little decorative pieces to view from the outside, and I like seeing them. I don’t really know why. So I started photographing them. I also realize it ups my “creeper” level a few notches, but I can’t help it.
Dog. In a Sweater. YES.Batman. He lives.Cups.That cat.
At one time, each and every human being on the planet was a tiny baby in a mothers arms. In front of him lay a pristine and untouched future, where anything was possible. One thing will shape the direction and vibrancy of that future more than any of other thing; love. From whom he learns it, from whom he does not, how he is taught it, and that he experiences it in its most authentic and pure form- unconditionally. Money is no matter, health is no matter, religion, beauty or brains. Without the message that love sends- the gentle reminder that who you are matters- all of these things are fine but rendered useless if they are anything but anecdotes to a love-filled life. There are many ways to measure a life, and many definitions to the word success. You don’t have to go far to find the richest people, the famous people, or the ones deemed very important. And they will often gladly share their secrets to what we call success. But behind numbers and cameras and curtains is a very basic human need- not desire- that we all share no matter what characteristics separate us. We have to have love to evolve. And we have to give it to surrender. And we have to lose it, at least once, to really know who we are. And when we find and learn to love ourselves wholly, then might we love others the best possible way. If we haven’t used it to fill holes, if we haven’t given it to get control, then what we’ve done with love, we’ve probably done it right.
Dude, I love elephants.Who Doesn’t Love a Tea Party?The young lovers of Moonrise Kingdom. Have you seen it yet? It’s good.Bears Love Each Other TOO.Walrus loves birthday cake.Monty and Mikey may or may not love when I dress them in towels.
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
I could tell you a lot of things about my life right now. That once again it’s 4 am and I can’t sleep. That once again Monty has gas but I love him too much to kick him out of the room. That the Chinese doctor told me not to take my pills today and so I haven’t. I feel the effects of it. I have some fear about it. Some hesitation. But I have the same fear of a life dependent on pills, so either way it’s fighting demons. I don’t mind being awake when the world is sleeping. So many days I’ve missed out. Slept through. Called in sick. Night is my time to take life back. I could tell you my music of choice at night when I can’t sleep–lately it’s Tchaikovsky (Swan Lake) but tonight it is Radiohead (In Rainbows) and I’m deciding whether to keep squinting hard and trying to force sleep or to give up. Give in. But since the only cure for insomnia I have found is waking up, I give in.
When I open my computer to begin, a fly immediately lands on the screen, undoubtedly drawn to the light of the monitor. When I scroll the little mouse arrow under him, he jumps. Flies away a second. Then he comes back. I play “tag” with my computer mouse and a fly for probably way too long and smile at this activity. What makes me smile more is that we have this big joke in my family that my dad would be reincarnated as a fly. He used to do this hilarious impression (often at fancy dinners, with no shame) of a fly, rubbing it’s little legs together the way they do. Half of the people laughed because it was funny and the other half probably laughed out of discomfort or something. He was such a nerd. This was his dinner entertainment. I wonder if this fly I am playing computer mouse tag with is my dad. Then it starts rubbing its spidery little legs together the way my dad used to when impersonating them and I smile bigger. Because these are strange anecdotes at 4:14 in the morning and I’d prefer to be getting sleep. But then again I would have missed the fly. The fly and all its mystery.
The Fly.
There are a lot of fly stories concerning my deceased father. Like at his funeral when my sister started crying and one landed on her shoulder. Most people would call these things silly, coincidental, random or meaningless. And that for sure is the easier belief. Faith requires energy. But it almost seems like doubt steals it. Sometimes it appears more attractive to trust nothing and be skeptical of it all. But there are incredibly real moments in my life, where explanation just doesn’t work. It’s beyond science. It’s beyond religion. It’s more along the lines of intuition, instinct, and of course, an awakened state of consciousness. It is really amazing what we can see and access when we are awake. But I think we’re mostly sleeping.
In early September I was beginning to really resent my situation. I was physically feeling worse and worse. Everyday activities were becoming harder and I was having to rely on people more than ever. I was beginning to resent the fact that I needed help, which is, insane. I should have been thanking every star in the sky that I had help, but I was too busy being upset that my life didn’t look like what I wanted it to. I was really irritable one day. I was short with everyone. I felt angry, sad, and misunderstood. I needed help but I didn’t want to ask for it, so I resented those who tried. Fed up over something stupid, I took Monty on a walk. We walked up “the hill” that presumably was what put me over the edge after walking up it once a day for a week and then facing a monumental crash. Anyway, at the top of the hill was wide open space for Monty to run and for me to think or yell or curse. On that day I let Monty run while I unloaded some words at the universe. I cursed and yelled because no one could hear me. Except maybe some cars that drove by slowly, and at least they had a story to tell later. (Yeah this girl was flipping off the sky and cursing about fibro-vagina or something?) Pretty soon, this fly landed on my face. I swatted it away and it immediately landed back on my nose. Again I swatted. Again, it returned. I was in such an aggravated state, I wanted to punch the fly in the face. I remember thinking those exact words: I want to punch this fly in the face. When I say the fly would not leave me alone, I mean it. For at least five minutes I let Monty run, let my tears fall, and relentlessly swatted away this fly while also trying to punch it in the face. As if that’s even possible. Fed up, I told Monty that due to a CERTAIN INSECT THAT WILL NOT LEAVE ME ALONE, we had to walk home. Monty looked at me like the psycho that I was, and then we started back down the hill. The fly followed.
I started to cry. All I wanted was peace. I was so upset and felt so alone. My life felt out of my hands and I had become completely reliant on others. I’m always the guest on someone else’s couch. When will I sleep on my own couch? I’m always going to be sick and helpless. These were the thoughts that were circulating. As you can see, they are pretty negative. They weren’t helping me. They were the cyclical mental thoughts that dig you deeper in the hole. The fly continued to dart at my face and I continued to flail my arms in what I think were actual attempts at punching it in the face or more simply, just killing it altogether. But to passers-bye, dear God, I must have looked insane. Finally, near our complex I began to calm down. It finally occurred to me; our little joke about my dad returning to earth as a fly. As I remembered I yelled “Seriously dad this is NOT the time!” So now I was punching the air and talking to a fly which I was beginning to believe was my dead father. Want to be friends?
The truth is, that was the time that I needed to be bombarded. The most effective thing that fly did was make me stop. And examine. And get to the truth of my experience. I had been feeling so alone. But the truth was I had love from all sides. I had family to carry me when I couldn’t do it on my own. It was just time for me to humbly accept that not everything was going to be on my terms, and that’s OK. You can still be happy down another path. Once you stop fighting it. That fly relentlessly flew at my face for at least 10 minutes, while I relentlessly tried to kill it. But by the end it had gotten through. Something told me, something from inside, that fly was a reminder. That life wasn’t over. That I wasn’t alone. That I shouldn’t be so irreverent about living. I was still here. Still breathing. And so I still had purpose.
I approached our front door, now smiling at the events of the last 15 minutes. I had tapped into a different energy. A better energy. All thanks to that really, persistent, annoying fly. Whoever he may be.
The other day I didn’t have a lot of energy (shocker) but Monty did (shocker). I was throwing the ball for him inside the living room and noting what an expert catcher he is. Like the dude jumps crazy high and catches basically every ball I throw. So I started recording him. Because I have time to do crap like that. Then it was such a beautiful day outside I said screw it, if I can throw a ball in here I can do it outside too. So I brought him outside and recorded all the different ways in which Monty catches a ball. Then I made a movie out of it and put it to some fun music because video editing is another one of those things you can do from bed, and again, I have time to do crap like that. Woo woo. So, below is the result. I guess I realize that Monty makes me happy in so many ways and even watching him jump to catch a ball makes me laugh. Now we all get to watch him. And the angels rejoiced.
Health, Happiness, Monty
*Note, you can’t currently watch this video on a mobile device like your phone because of a third-party licensing issue with youtube…Booo, I know. I’m working on it.
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.
So confident.
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.
When I wake up
Everything is just how I left it
In between tossing and sheets
sweating and dream world,
the killers wore off
And it’s as though nothing has changed
I still feel everything.
Because the hour is inappropriate
To start a day now,
I re-dose and wait
And this is admittedly exciting for me
That’s what they call
The thrill of relief.
When the killers go to work
I will struggle but win eventually
I’ll go back to dreaming
Where everything is the same.
I heard once
That you don’t feel pain in your dreams
Which makes me wonder
Where I’ve been going every night.
Last night I dreamt of money
And big powerful bankers.
I counted my money repeatedly
And my fingers throbbed
Until I dropped it all
watched it scatter
When I awoke I couldn’t recall the amount
Something had changed
But my fingers ached the same.
When I awake a final time
It will be inappropriately late
To start a day
Everything that once was numbed
Will have seeped back in,
alive and noisy.
The jury is out
On the purpose of pain
But each night it comes
Then the killers kill it
And I return to dream world
Until it comes again.
When I awake,
Everything the same.
Sound the bells. I survived the Colorado Crash of 2012. I’m alive. Woohoo!
Yesterday I finally started feeling back to my normal sickley self, not my deadly sickley self. And it feels good to be able to be out of bed for more than an hour a day. That tends to wear on a girl…at least a little. I can’t believe what a disaster my Colorado vacation was. It’s funny I’m still referring to it as a vacation. That’s like taking someone to the DMV and calling it a date. It was really hard for me to enjoy my time there because I was in constant recovery, catch up, and crash mode and the cycle didn’t break the whole time I was there. I had to say no to things and miss out on things which I’m typically “OK” with but this time I felt real sadness and anger about it. I wanted to blame someone, I wanted a reason, I wanted to “talk to the manager” about this. I wanted it to be somebody’s fault and somebody to fix it. But, that’s not how it works. These are the things that teach us grace and surrender and sometimes getting the lesson is the most painful part. By the last night I had broken down in tears just exhausted from being exhausted and feeling like the Debbie of all Downers. This illness tends to turn its victims into high maintenance fun suckers when it’s at its worst, and nobody likes to be around that. By the end I was tired of who I was on that trip and what I required. But my brothers talked me through it and we decided that next vacation we take, we aren’t making an itinerary. We’re not overcommitting to engagements and we’ll try to just take each day as it comes. We’re going to try to effectively do nothing–something I’m pretty spectacular at and most people are still getting the hang of. I’m happy to teach my ways. I’m doing nothing right now!
As hard as the last two weeks have been, I feel like it is all starting to pay off because now I find myself in Paradise. My sisters in-laws left yesterday morning for a three-week trip to Africa. When they told me about their voyage months ago my first question was what they were going to do with Mikey–an enormous yellow lab and king of the household. When they threw around options I casually mentioned that Hey, I have nothing to do in August (or any month ever for that matter) and I could watch Mikey for them if they preferred he had a dogsitter. A few days later they took me up on the offer and even allowed me to bring Monty here too. So now, after all the exhaustion, noise, chaos, itineraries, plans and breaking of plans, I find myself in a beautiful California home with two loveable drooling teddy bears, and I could not feel more at peace having arrived. When I wake up in the morning, there is silence, and there is no itinerary to follow. DO YOU KNOW HOW GREAT THAT IS!?!?
Truthfully I have always treasured my solitude. If I were a Country Singer, I would write a song called “Solitude Has Always Been a Friend of Mine.” Anyway, it happens at least a few times a year that I require almost total isolation and dream of being locked up in a cabin somewhere and cut off for a little while. It’s like my souls version of food cravings. I have always enjoyed small endeavors on my own. Sometimes I like to eat at restaurants alone, or see movies or go to the bookstore. I love not having to keep up a conversation and going at my own pace, which is usually pretty slow. There isn’t anything so commonplace and exhausting to me as small talk. I have no patience or energy for idle conversations anymore. I don’t like having the “What’s new with you?” conversation. I don’t like to hear how your job is going or how your brothers band got a new drummer. And I don’t like to share news from my neck of the woods either–obviously because I don’t have any. “Yep, still sleeping on peoples couches. Well bye!” I realize this probably makes me sound like an old curmudgeon, and maybe I’m starting down that path at the ripe old age of 27, but there is something about those forced conversations that sometimes even the mere thought of them drains me. They just feel so inauthentic on both ends and since my time out of bed is so precious anyway, it’s hard for me to spend it on a conversation that we’re having to fulfill some duty–or because we feel like we should. This is why having a dog as a best friend works out great for me. No elevator talk.
I don’t care about your job.Me either!
The other part is, while writing is my passion, it’s kind of a lonely practice. You can’t do it well with people around. And you kind of have to “strike while the iron is hot” which is typically for me sometime around 3 in the morning. The act of writing is not nearly as satisfactory as the result, and many times the process is grueling. Anyway, the only living thing that can hang out but not disturb me is a dog. Two dogs even. So Monty and Mikey have been great companions. We eat, sleep, swim and write and there’s no itineraries or talking about our jobs. Wanda left me a note welcoming me to help myself to any and everything and to write a book while I’m here. Think I’ll take her advice.
I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.
Not Too Shabby a View
I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.
Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!
The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)
On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone itso many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.
Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.
In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.
I arrived in Miami on Friday to spend a few days here. This is partially the reason I’ve been so crashed. I never do exceptionally well when I travel, and this time was no exception. But it’s nice to be sick in a beautiful place. I mean if you’re gonna be a human waste-land, might as well be a human waste-land on a beautiful beach. My brother and sister-in-law had a baby shower this Saturday (she’s due in March)and we decided to make a Gelpi Power Hour weekend out of it. I am staying at a hotel on South Beach and I dreamt all night of heavy base techno music. Wait, that was not a dream. I was actually up all night listening to heavy base techno music ricocheting off the walls. At around 2 am I kid you not, Club Mango played that song “What is love? Baby don’thurt me…” and it was like a real-life Night at the Roxbury!
Mm hmm.
Truthfully it wasn’t the music keeping me up, though it didn’t help. My legs were on fire, cramped up and emitting heat like they do. So I read more of my book as the base and noise of drunk people bounced around below. At first I was agitated but then I grew to like the sounds. It added to the authenticity of my Miami stay. It reminded me of what the noise of being alive is like. Also they played a lot of Rihanna so, you know. That was cool.
Every now and then they’d play a song I liked and out of the corner of my eye I’d find my foot tapping to the beat of the song without knowing I was doing it. The interesting part of it was that as I noticed this, I started reading a chapter in Marc Nepo’s book called Questions Put to the Sick: When was the last time you danced? I think this is what Carl Jung would refer to as Synchronicity. But that’s another story.
Allow me to say some things about dancing. 1. I love to do it. 2. I’m kind of terrible at it. 3. I don’t care. 4. OK I kind of care. 5. After a few beers I don’t care anymore. And I’ve been told my skills have improved. Anyway, I love dancing. I actually crave dancing. If there is a span of time where I don’t dance, I get the dancing itch, and the only cure is to rock out somewhere with loud music and move my body in any deformed way it feels that communicates physically the fun I’m having in my brain. It can be alone in my car, or at a bar, in the shower, or a wedding. Ooooh weddings. Those are the best. I think that’s why Dane Cook’s standup about girls saying “I just need to dance,” rings so hilariously true to so many people. Sometimes I’ll feel ansy and I know it’s because I need to just dance it out. I swear I’ll wake up the next morning after dancing and feel better, as though it was a bug I had to get out of my system. I’d argue it’s just as important as your dentist appointment or annual colonoscopy. You just have to do it. You’ll feel better once you do.
I may or may not have been compared to Elaine in the past.
Or you’ll feel worse. Wah Wah. (Debbie Downer tone) Being sick and constantly walking a fine line between functioning and non-functioning, there’s always the possibility of over-doing it and paying a price. Like last year in March, I danced the Dougie way too hard one night and I was crashed the next day. All because of the Dougie. But I need to say this: it was worth it. Sometimes you pay a price, and sometimes it’s worth your while. “What happened to Mary?” “She Dougie’d too hard last night.” “Poor thing. I’ll make us some sandwiches.”
Here’s what Nepo writes about dancing:
The ongoing effort to dance, to give gesture to what we feel and experience, is ultimately healing because, as riverbeds are continually shaped by the water that moves through them, living beings are continually shaped by the feelings and experiences that move through them. If there is no water moving through, the riverbed dries up and crumbles. Likewise, if there is no feeling moving through the body, the being at the center of that body will crumble.
More often though, there is too much to give gesture to, and we fail to move these feelings through our bodies. In truth, much of our inner sickness comes from the buildup and pressure of all that is kept in. The ongoing act of releasing that inner buildup is what spiritual practices call embodiment. …Once unblocked, giving gesture to our inwardness not only frees us from becoming pressurized, but the gestures, once allowed out, teach us how to dance further into our own lives.”
Pretty cool right? I know some people think it’s just psycho-babel and the idea of someone shaking their ass in the club to Lil Wayne and calling it spiritual embodiment is just a joke. Understandable. But pay attention to the music you hear and the subconscious urge you feel to move. It’s not a calculated choice we make. Even babies and toddlers begin to dance (sometimes better than me) when music is played for them. Sometimes, we should be still, but sometimes we should MOVE BABY. And don’t let your thoughts get the best of you. Don’t try to analyze it or over think it. The best kind of dancing is unrestrained, uninhibited, belting at the top of your lungs-holding a pretend microphone-singing to a pretend audience, unrepressed, uncontrolled dancing. It doesn’t matter if you’re bad. If you’re having that much fun, you’re far from bad. You’re the best!
So the next time you’re out, or in, and you feel the hunger, satisfy it. It is actually good for you, for your body and your soul. If someone asks you why you’re dancing alone in the kitchen, tell them you’re moving your life experiences through your body so you can dance further into your existence. They’ll like that. Here’s one last anecdote about dancing. After my step-dad died in 2006 the house was oddly empty and the family was pretty down. My mom told me later she would turn on Ellen in the afternoons and dance along with her, by herself in the living room. Sometimes it was the only thing she achieved that day. But guess what? It made a difference. It changed the energy of the room. It changed her energy–Made her smile, even for 30 seconds. And in times like that, you’ll grab hold of anything to get you past the moment of pain. So I love that part of Ellen’s job is to get up every day and dance, and to get other people to dance along with her. I love that my mom got up and did it, even when she felt devastated and lost. These are small, small things that in the end can shape large parts of our lives. I haven’t danced in a while, so maybe I’ll give the Dougie another go tomorrow and just cut myself off a little earlier. For now, my legs are cramped and I’ll do some research on fatigue-friendly dance. Perhaps I’ll head down to the nursing home and see if there are any classes there. They’ll be more on my pace. Maybe I’ll even meet somebody special.
FibroM.E.-Awesome 
