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.
It is sunrise again in California and I am reflecting on the last few months of my life. I just dropped my mom off at the airport to fly home to tend to other business. Newsflash, she has a life outside of nursing Mary back to health! I’m really lucky she was able to come. She did an incredible job as most Dr. Moms do alongside my sister and I am much more functional than when she arrived a few weeks ago. I can climb the stairs easy peasy this week–that is something new.
I feel a lot more at ease since she arrived and helped me to process some pretty heavy thoughts I was having. For one thing, I kind of thought I was dying, because I’d never felt that bad before and I imagine death must feel like something close to that. It’s pretty unsettling feeling like you can’t walk or hold a brush to your head or take a shower. Forget climbing stairs, I was scoring my days on whether I could walk to the bathroom or not. Since then my strength has slowly inched its way back. I still do very little physically throughout the day as to not overdo it, but I can feel some energy where there was none before, and for that I am really grateful. I’ve been drinking protein shakes from the naturopath doctor three times a day along with 12 other supplements alongside my normal pill cocktail. I’ve been drinking Chinese tea from Dr. Xu that tastes like ground up birds nest and getting acupuncture twice a week. My B12 was low so I even learned how to give myself a shot…in the butt. It’s impressive. But anyway, it’s helping. All of it, I think, is working in different ways and putting Humpty Dumpty back together again.
I notice that every day has it challenges. Mine has different uncertainties and struggles. Will I be strong enough to climb the stairs, will I get to shower, will Monty and me save the world?! And the truth is I just don’t know. None of us do. There is no certainty about what will or won’t happen tomorrow. There is just here and now. And I notice that when I examine my life with clear hindsight and an open-minded eye, I see that it’s not bad. Like at all. It’s actually kind of enjoyable! I’ve gotten to spend time with my sister and brother-in-law that I never would have had otherwise. I’m lucky to have a mom who was able to fly out at the drop of a hat and give me some much-needed help. I get to read and write as I please. (Even though it’s mostly from bed.) I get to spend ample time with my favorite person, Monty, and I get to put my very little energy towards something positive–writing, humor, optimism, and good news. There are a lot of outcomes of this seemingly crappy situation that are not themselves crappy. They’re more like great. And that always gives pause for reflection. But trust me, it’s easy to go the other direction. The slightest tip of the scale and I could see things very differently. Darker. And I have those days sometimes. I could say it isn’t fair. I could say this isn’t the life I wanted or signed up for. I could look at all the healthy people with their functional lives and long for that to be mine. But, like Iyanla Vanzant says, that’s a life path that doesn’t belong to me. So it’s important to let it go. As long as I try to get back something that was never mine, I will suffer. As long as I tell myself a sad story, I’ll pay.
What’s your story morning glory?
We tend to think we know best for ourselves. And many times that’s true. But the problem with the human experience is that we are stuck in the mental limitations of space and time, so it’s hard for us to see our lives in the context of eternity. But that’s the truth of existence. We’re just a small part of something much larger, and we aren’t meant to see all of it at one time. I think we’re meant to just hold on and enjoy the ride, and when it’s a shit show, like my life the past year, you hold on tighter. You pull in people to help. You acknowledge there is something bigger than you, and focus your energy on balance. On acceptance. On inner peace.
The thing is, you can’t just tell yourself a happy story about your life and you’ll be happy. You have to believe the story you tell yourself. For some reason it’s like we’re conditioned to believe the sad story more than the happy one. And through the dark times especially, it’s not as easy to find the pretty things, but they are so valuable when you take time to find them. That’s why acceptance is so important. Once I stopped focusing on the happy life I would have once I got better, and instead focused on how to be happy with the life I have now, I found much more success. And it takes work. I have to remind myself everyday of the things that I am lucky for, and most of the time it’s a no-brainer. It’s family. But it’s easy to forget. To slip up. To fall into the humdrum of life and feel like you’re not where you’re supposed to be. And maybe you’re not. But most of the time, life just requires us to be present where we are. We already have everything we need, we just have to be aware of it. In The Untethered Soul, Singer wrote that “Life is surrounding you with people and situations that stimulate growth.”So before you judge your life and your hardships, try to acknowledge that this is what you need in order to become whole. In order to become who you are– the best possible version of yourself. It sucks sometimes. It’s hard. Don’t I know it. But if in the end it forced you to grow and become awesome and happy, well then, it’s worth it isn’t it? Maybe it isn’t such a sad story after all.
I’m learning I have to be careful about the story I tell myself. Because if it’s a happy one, that will be my life. But if it’s a sad one, that will be my life, too.
It has taken me a long time, a very long time, to admit what I am about to. It’s not a very big deal at all, but I’ve spent a long time fighting the very notion of it, and in the end it’s completely true; I am totally reliant on the help of other people right now. I need help. I can’t do life on my own. It’s been this way for a while and though many times I’ve picked myself up by my own bootstraps as they say, and I’ve done all I could to live a life that is mine and have a struggle that I conquered, it just isn’t the case. And why that would be so hard to admit or accept for me, I have no idea. It must be the ego in me. It doesn’t want to admit I need help, but the simple truth is, I do! A lot of it. It’s all so silly. Sometimes life is hard and sometimes you need help. It’s OK to ask for it. And if someone offers it to you, you should accept. The world is full of good people and many of them are happy to help someone out in need. We’re in this together people! Independence is important. Solitude is a gift. But there are 6 billion people on the planet and I don’t think we were put here to suffer alone. This is where and why love exists, and I am seeing now that I need to channel my old fire for autonomy into pure grace and gratitude that I have people who are willing to help me when I’m down. Even when sometimes I don’t deserve it. When I have nothing to offer back. When I resist it. They give it anyway, and I am incredibly lucky for that, for them. It’s really time for me to let go of the anger that I can’t do it on my own. (I think they call this surrender.) Little by little, I feel my pride give way to acceptance. It hurts. It’s hard. It doesn’t always present me in a very pretty light. But there is freedom in admitting you need others, and I’m getting there; slowly letting go of a life path I had in mind that didn’t work out the way I wanted it to. Well boo hoo. It happens. The universe had other plans and here I sit in California listening to coyote puppies howl outside and trying to understand grace. I know it won’t always be like this. Things don’t stay the same. And the truth is it doesn’t matter whose couch I’m on or which family member I’m bumming off of. The key to my happiness is just being where I am. I really need to let what was, go. Let what could have been, go. There is just this, just where I am now.
The model citizen in this whole experience is easy; It’s Monty. Two years ago he happily rode in the backseat with me after the day at the hospital–let me use him as a pillow on the hour drive home to my parents house. It was a gradual move-in, but Monty seemed like he knew we were there for the long haul and quickly embraced our new house. (He was right.) I remember waking up one morning to find my mom feeding him cantaloupe off of a fork and laughing. Marc took him to the prairies with him and they quickly became partners. When I was too weak to play he slept. When I was sad he would fart or do something equally meaningless but would somehow lighten the mood. When I decided to go to Colorado, he got on a plane with me and we went, and he didn’t lose his temper when we were delayed for 6 hours in the Houston airport. He played fetch with a rubber band and then he waited patiently. When I came to California he came too, swam everyday and had a really good time. When we moved into an apartment with my sister and brother-in-law with not a lot of space, he made himself at home. I’ve always wondered what Monty in a bad mood would be like. I’ve never seen it. Every day is literally the best day of his life. He wakes up so excited. Could I be like that? It seems worth it to try. I’ve never seen Monty stub his toe and then yell “mother fuckerrrr!!!!” like I did the other day. Or complain about the agenda or the situation or his crappy pebbly food. It’s like all he does is love and embrace everything. His energy is really good to be around and I don’t take it lightly. I know I’m a little obsessed with him and people say “It’s just a dog, Mary.” But what does that really mean? I’m just a human. Monty seems to have something figured out that I don’t and I don’t see the problem with learning from another species. Some things, they just get. Anyway, it’s fun having him along.
Model Citizen.
He is just another part of the “Help” I’m receiving. The best part about dog help is that you don’t really have to ask for it, they kind of just know. So whether it’s Monty keeping me company in bed, my sister carrying me up the stairs, my mom counseling me through dark stuff, or a million other ways in which I am being helped by other people, I am finally comfortable admitting that I need it and I need them, and that’s OK! We have a tendency to want to do it on our own, but I promise it will be easier when you don’t go at life alone. Especially through the rough times. Maybe one day I’ll be able to return the favors to my friends and family. Pay it back. Or forward. Technically I’m in debt to a few family members like a jillion dollars but one day I tell them, I’ll pay our bills and take us all to Hawaii. Or I’ll do the house chores for them when I’m on two feet again. Or I’ll just keep being the lifeless girl on the couch who tells jokes every now and then. At any rate, I’ll keep trying, and I’ll continue accepting the help from the troops who were called in. As hard as things get, it’s nice to recognize that I’m not in it all alone. Dare I quote the Beatles “I get by with a little help from my friends?” Oopse, I just did. Well there you have it.
Good morning world! Guess who’s up at 7 am?! I haven’t been up this early and actually felt alive in a long time. I woke up in pain but I wasn’t weak like I’ve been and the best part was this; I woke up just in time for the sunrise. It’s funny that such a phenomenal event like that happens every, single, day, and how seldom we actually see it. Or stop to watch it. My immobility in the last few weeks has left me observing the worlds tiny gifts that I didn’t used to see before. Like yesterday I watched a spider web glisten in the sun and was like whoa, that’s beautiful dude! Because my life has become so contained, I’ve been seeing the small things surrounding me, and suddenly they seem just as big as the things I used to strive for- independence, health, conquering the world. Those kinds of things. It reminded me of something Mark Nepo said in an interview that I wrote in my notebook. He was talking about finding “the special” in everyday life and how important that is to happiness. “Become easily pleased. Find what’s special in everything. Everything glows. There are more distractions and distortions now than ever. The challenge is how do we balance–how do we hold at bay all the voices that are forever crowding in, and hear the voice of own soul.” The answer, he said, lies in stillness, reflection, and “spiritual aerobics.” I liked hearing that. And I find the special little things often outside when I’m on a walk with Monty. A fallen birds nest or a bright red door or marshmallow clouds, a little kid with a suitcase or an old man with grocery bags. Whatever it is, it’s easy to miss. But I notice that when I’m quiet I am surrounded by extraordinary things. You don’t have to travel across the world to see incredible things. It’s more about a change in perception than location. We have a tendency to think happiness is “just over there,” beyond the next hurdle, over the fence. I keep hearing that happiness is something already within you and I see now, it’s just about accessing it, activating it. It’s gettin deep in here yall!
This week marked the beginning of a new project: GOOD NEWS IN PLAID! Woo woo. This project started pretty unorganized and is still coming together. But I have to say, I feel better after I report good news. I like hearing other people’s good news. And I enjoy avoiding politics, terrorism, disease, and murder. Who knew? In the beginning I was like why am I doing this? I don’t even feel like moving! But then I was like, wait, I have nothing else to do. I might as well report good news. And it’s something I can do from bed, or the floor, or the couch. So I’ve been recording myself (and Monty) everyday reporting a few pieces of positive news from my own life and other people’s. Yesterday, 32 people left comments reporting their good news on Facebook, so I recorded myself reading everyone’s little bits of good news..without reading through them first. Then I showed it to my sister and realized it was a 10 minute long video and one of the more awkward things you’ve ever seen in your life. So she recommended I edit it down to like 5 bits of good news instead which is probably a better idea. I try to disregard the ridiculous parts of the video where I look and sound like a moron–like when I ask “You can make your own cheese??” (You’ll see) My sister laughed for a good ten minutes at me for that one. But it’s just about positive energy and good news, so I’m sticking with it. It’s also really hard to find the music you want on YouTube, so this video ends super cheesy and the music sounds like something that would come at the end of that movie Precious or on a Cadillac commercial. But anyway, Keep the good news coming…I love hearing it and reporting it, and I think everyone agrees that the world could always use more good news. Below is segment 2 and 4. You can see all the videos at goodnewsinplaid.wordpress.com. I’ll continue to post 1 a day.
In other news, I started seeing two new doctors. One is a Chinese doctor who practices traditional Chinese medicine and is the most delightful man you’ve ever met in your life. Doctor Xu (pronounced Sue)It’s a whole different approach to health, but a lot of it makes sense to me. It seems to work with your body instead of just supplementing pills for symptomatic relief. And since this illness manifests itself in entire body system malfunctions, it feels like a good approach to take. After looking at my tongue and nails and asking a few questions he said “OK, I fix you. Two or three months. I fix you.” He makes his own chinese herbs and creates a tea out of them based on getting your body back in balance and “lighting your internal flame.” Haha. Whatever that means, I’m up for it. He also helped my sister out a lot when she was experiencing chronic migraines and often sick after college. So now he gets to try to heal her sister. His Chinese herb teas taste like what I imagine a bird’s nest ground up in a blender with some carrots thrown in would taste like. But if it means getting better, I’ll try anything. He also does acupuncture which I really like and cupping which feels awesome. But it leaves you looking like you’ve been attacked by a circle monster. See?
I know, it looks gross.
The other doctor I am seeing is a Russian woman who practices naturpathic medicine. She believes that I didn’t get rid of the lyme disease on the first go-round and so I am still fighting that with “co-infections” and that’s most likely why I feel like I’m dying. :) Anyway, she has a plan, and Dr. Xu has a plan, and I’m trying it all. Open to anything. Maybe with a combination of Western, Eastern, and Russian Naturpathic medicine, I will get to feeling like a human being again. As my mom says, “All the kings horses and all the kings men will put Humptey Dumptey back together again.” It all sounds good to me.
I never write on Sundays, but I have a little energy today and after a sick and cloudy week, I’m taking advantage of some mental clarity. The truth is I don’t have a lot of news physically. I have been the weakest I’ve been in my life. It’s a little nuts. It feels like trying to move through maple syrup. So life has been in slow motion, literally. But as always, I have help and constantly remind myself how lucky I am for it.
The real challenge with this latest crash has been maintaining emotional resilience. I remind myself of the same idea each time it gets overwhelming; this is only temporary. And when times are golden and everything is going perfectly, that will be only temporary too. The point is to find inner peace and joy that is resilient through circumstance. So just look at the bad times as intense training. Training isn’t forever. At some point you go out into the game and test your skills. And no doubt, the world will always provide you with situations in which to test yourself and what you’ve learned. This year has had a lot of training and a lot of tests, but a part me feels that I am only just beginning to understand any of it.
Since I have a lot of down time, not moving and all, I do a lot of weird things. Like look at nothing out of a window for a long period of time, not really knowing how long has passed when I snap back to present. Sometimes I listen to Debussey’s Claire de Lune over and over and over and just feel the aliveness of a song like that, even though I feel like only a half-alive body. I watch French movies on Fridays because verbally, it sounds nice. French Movie Fridays. Also I love French movies. I write down things in my notebook that I don’t immediately understand or know from where they come; sometimes I just feel like the person holding the pen, channeling something else altogether, something separate from me. Deepak Chopra would say there is no separate, there is no you and no me. Each person manifests the entire universe, all of the people, and the source itself, within themselves– thus separation is just a human illusion. This is why when you hurt someone else, you hurt yourself. This is the oneness found in “waking up.” This is how he explains the part of you that isn’t born and won’t die. It embodies it all, and it is eternal. So I guess some of the things I write down are being pulled from an all-access consciousness that has always existed. I don’t know. Maybe getting sick is what it would take for me to stop and pay attention, to finally write down dormant words, to know what it is to be alive. I just know sometimes I write things that are far more intelligent than I am and I don’t even feel right taking credit for them. Except the White Girls on Facebook post, that was me. :)
There’s a funny phenomena that happens when I’m sick: Once I start to feel better and recover, I can never remember how sick I was or how bad it felt. I can imagine it but I can’t feel it. It’s like my brain deletes the sense memory of it. I have read that this happens to women after childbirth, and I guess it’s an evolutionary survival mechanism. If women remembered how bad it hurt, they’d never have more babies! It’s like the worst hangover you’ve ever had. You swear you won’t do it again, but then the beer tastes so good and the buzz is so nice! I don’t know what the meaning is behind not being able to recall precisely the physical feelings, but being this weak and incapable feels pretty burned in my mind by now. I may not be able to access these feelings again once I’m better, but what I need to remember is that shit, life is fragile. One day you wake up and you’re too weak to walk and your mom and sister have to feed you. It’s not all pretty, but I know there is meaning in it. It’s easy to throw up your arms and scream WELL WOE IS ME, life is unfair and none of this matters. And I’ve done that some days. The problem in doing this is that the very conclusion leaves your experience meaningless. The suffering is the hard part, but if you can hold on, if you learn to live anyway, then you’ve transcended the pain and evolved and it wasn’t for nothing; growth can never be bad. Following the pain always comes pleasure, even if it’s a simple change in perspective. Plenty of people have experienced far greater tragedies than me and come out on the other side– happy and wise. Like my mom for instance, who survived the death of two husbands, but didn’t succumb to darkness and managed to emerge happy and loving.
The goal in all of this for me is not just to stay positive and hopeful, but also to keep my perspective wide and my problems right-sized. This is just a moment in the context of eternity. It’s still really hard but it’s not forever and I’m not on my own. It’s easy to feel like the world is really big and you are really small and your little problems are terrible but that they don’t really matter. But they do, and you do. The way to make them matter most is to conquer them– with humility, grace, whatever you got. Everyone has their battles and each leads to their own lessons and outcomes, all necessary for the evolution of the world. But we all have to do our part. I don’t pretend to know how it all works, and I don’t think we’re meant to know the whole truth in this limited dimension we live in. That may explain why I had a dream last night that TRANSCENDED TIME AND SPACE and I have no idea how to put it into words. I probably sound like a kid during his first experience of dropping acid, but some things we just can’t fathom on earth. And that’s fine. We just need to do our best.
So I’m going to keep trying. Keep hanging on. Keep reading what the Greats have to say and try to make sense of it all. It’s been a challenge to stay optimistic and happy, but I know it’s necessary and I will work just as hard at that as getting better physically. In that light, I’ll introduce a new project that begins tomorrow. I’m going to report a few minutes of only good news every day for 30 days. I’ll begin with personal good news (like, I had enough energy to take a shower today!) then report national good news and then worldly good news. The idea is simple- I’m too young to be cynical. My situation is depressing enough and I don’t want to keep watching the news to see how crappy the world is and how bad people are. It’s important to stay informed on events, but I think it’s just as important to see the good things people are doing and the positive stories too. So that is the newest project and I will post the first video tomorrow around 6–that seems like a newsy time doesn’t it? I will always wear a plaid shirt because plaid makes me happy and I have a lot of them and we’re striving for good vibes here. To give you an idea of things I won’t betalking about, here is the backdrop to my very high tech news desk.
**Addendum! I jumped the gun on my 6 o clock timeline. I’m a little behind. But the good news is now up at goodnewsinplaid@wordpress.com. If you have good news you’d like me to read on air, send it to goodnewsinplaid@gmail.com. It can be anything from your little league team won to you’ve been constipated for a week and maybe you finally had a bowel movement. If it’s good, it’s good.
Good morning world, it’s been a little while. It’s 4 am in California and I have to say I’m OK feeling wide awake despite the indecent hour. I feel like I’ve been in a sedated state, in and out of consciousness for the last week–more out than in– and it feels good to finally feel alert enough to touch base with myself again. I have never been this sick before, at least not for this long. It’s beginning to make my other sick days feel more like mere child’s play. They’re nearly laughable when I think of them now.
I move when I can, which isn’t very often. It’s difficult to do basic things for myself these days and it sucks to have to ask, but that’s where I am, so I’m trying to make peace with it. Walking is really difficult and the weakness gets overwhelming. It sort of feels like trying to walk underwater–like someone smothered all of my joints in honey. Anyway, being stationary for such a long period of time isn’t super fun (for me or for Monty) and sometimes the mental housekeeping can be harder than the physical. It’d be nice to lose myself in the distraction of anything physical…tennis, shopping, drinking with friends, a road trip or camping! But it’s all out of the question, so I am left to my consciousness and the quiet of days as the world around me spins on without pause. I know it’s vital that I stay positive; that I don’t succumb to the fear and despair lingering between wakefulness and sleep, and that I surrender to where my life has me for now, and that I remain precisely clear about the difference between that and giving up. I am always going to pursue the healthiest routes and happiest choices, but I also need to just exist where I am- which right now, is immobilized in my sisters apartment. When I try to move around I am worse the next day, so it’s bed rest for me. Not much of a choice anymore.
The good news is, I have help. My sister has been doctor for a while now, while my brother-in-law insists on eating when I don’t want to. My mom flew in on Thursday so now the help has help and I am lucky for all of it. And Monty too of course. He’s a mental help to us all, and when things get sad or heavy somehow he finds a way to make us all laugh. I think he’s anxious for me to be back on two feet but he’s patient as always. He’s taken to my sister and brother-in-law, like he knows they’re the ones with the energy. They’re the ones who will throw him the ball. So he plays fetch with them and my mom and when he comes back in he trots straight over to whatever piece of furniture I am using as a bed and curls up next to me; content until the next time he needs to go out. He is a constant reminder to be in the present moment. That is something that dogs just get and humans mostly miss.
I am going to be very honest and say that emotionally I’ve been kind of a wreck. I’m not a huge crier but for some reason when I fall into these weak, dizzy crashes, tears just roll down my face. I don’t even necessarily feel sad when it happens. It’s like this strange cause and effect I don’t feel I can control. So, I let the tears come. I try not to harp long on any negative thoughts or fearful worries; they are not only useless, but detrimental at this point if I give them too much pause. My mom told me “You can’t afford the privilege of a negative thought right now,” so I try to stay away from them. If they come, I let them, and then I let them leave. I am beginning to learn the art of detachment. Or I’m getting a crash course in it. I don’t know that I have another choice, and I must say I’m getting pretty good! I’m writing about this because I know that so many people have felt what I am feeling now, and many of them have not had support systems behind them. I want anyone to know who’s sick or troubled and reading this that it’s OK to want to punch the wall, scream really loud, curse the car door and earth, the universe, or God. I have done all of these things in darker moments, and sometimes a good scream or cry is necessary. It’s OK. Sometimes if I’m too tired to yell, I just flip off the sky. As if the clouds brought me to this point. It’s like the most passive aggressive protest I can demonstrate, but since my arms down to my fingers are weak, I don’t leave it up there very long, which usually leads to cursing. Haha. But what I also know is that anger and screaming and crying and cursing…it just doesn’t get me anywhere in the right direction. It doesn’t move me along. It’s really easy to be mad at a situation; to be pissed off or sad or claim unfairness. But where that gets you is stuck further in the predicament you were already in, just now you’re a miserable person in a shitty situation. It’s just plain more interesting to be a happy person in a shitty situation. Try it! When people ask how I am I say “Terrible! And it’s the best day of my life!”
My goal now is to stay as happy and positive as I can, which so far has been extremely hard. But I’m going to keep at it. I’m letting negative thoughts come and go and I follow them up with something better. Something true. I constantly remind myself of what I have; love, a family that gives a shit, good doctors, good friends, and the best dog in the world. A few examples; my friend Kaitlin aka Matt Damon texts me our inside jokes throughout the day, often consisting of lines from Billy Madison, Orange County, or philosophical thoughts on the Golden Girls. Sometimes a one word text can make me laugh, and that feels like a step in the right direction. My brother Nick sends me interesting and positive reading material or funny pictures of the baby. My Stupid Friend Jess sends me her favorite facebook statuses of the day, which are always terrible. And hilarious. My mom and sister let me cry when I need to but are always encouraging, reminding me of the truth, and that is so necessary at times like these. And me, I’m kind of just hanging on. I don’t really feel like I’m driving the car to my life right now, but, I can at least control the music. Is this metaphor too much? Anyway, instead of playing like, Coldplay and Radiohead, I’m trying to play happier and motivating things. The Black Keys, Vampire Weekend, The Rolling Stones, and Ke$sha. Come on, that Tic Toc song can make anyone dance. We’re out of the metaphor now, I actually like listening to that song.
So, that’s where I am. It’s a really rough time, but I know it isn’t forever. And I know the answer to it all is not in anger or sadness or self pity, even though these reactions and dispositions are often the easier, default choices. It’s funny how conditioned humans are to respond this way to stress in life–and how absolutely worthless it remains. You’d think after 2000 years of civilization we’d have gotten it by now. Even the dogs get it! Anyway, as I sit immobilized, a heat pack on my muscles and the smell of BenGay circulating in the air, I’m beginning to retrain myself. My body is crazy weak, so I’m going to work on a stronger mind. I know that every situation is an opportunity to grow, and I guess it comes down to whether you want the experience to leave you larger or smaller than you were before. My hope, of course, is to walk away wiser and stronger. And while it’s the harder path to take, I know it’s not impossible, and so many others have endured far worse and done just fine. In the meantime, I gotta stay positive. So send me funny stuff! Among the 25 pills, laughter is still my best and favorite medicine.
I don’t know of any other way to describe the past week except as a shit show. And maybe that points to how juvenile I am, but I honestly can’t think of a more sophisticated word. If you read my last post, you can see that I was in a bit of a bad way last week. I crashed really hard last Monday and was feeling pretty deadly. We did the normal protocol and quadrupled my hyrdrocortisone and I mostly stayed lying on the couch or in bed, researching the little amount of money spent on this illness and writing somewhat of an angry blog about it. I don’t usually like to succumb to moments of mental negativity like that. I think anger has its reasons for existing, but I have always wanted this to be a place of optimism, humor, and hope. So I hope I didn’t put too bitter a taste into the community here. I also need to remember that more research than ever is being done, and while we do have a ways to go, we’ve already come along ways. I’m not going anywhere, and no matter how far agencies like the NIH and CDC take the research, the goal is always to be as happy as possible, with whatever you got. The other goal of this blog is to promote awareness, and so maybe my little moment of anger can help do that in the long run. I think the best thing it did was inspire many of you to comment or email with your stories. Many people say it helps them to read this blog, and the truth is, it is just as helpful for me to hear from you. It’s easy to get so lost in your own story that you only see yourself in the world. The truth is no matter how poignantly real it can feel sometimes, we aren’t alone in this, and that’s maybe the most important thing to remember.
On Sunday morning I had started to bounce back from my week-long crash. I thought. Part of the “Shit Show” of last week was that on Monday, our kitchen flooded due to a leak in the wall. It was going to involve some major reconstruction (basically knocking out every wall in the kitchen) but they assured us it would only take a week. My sister thoughts were that we should move apartments. She’s all too familiar with how long a “week” takes in contractor time. But the idea of even packing my bags in a suitcase felt devastating to me, and luckily my brother-in-law was in no mood either to up and move overnight. So we decided to stay. But a few days later as I was walking through the hall, water seeped up through the carpet onto my feet. Never really a good sign. The workers came back and found the leak had begun to flood the master bed and bath and the front closet. By Friday morning, I was still pretty crashed and somehow there were 5 workers in the kitchen beginning demolition and making a shit ton of noise. The noise permeated my dreams but I stayed sleeping. If you can call it that. Keegan came in my room a few times asking if I wanted to go to his parents house to sleep, but the idea of getting in a car and going felt like too much. I said no, rolled over, and went back to exhaustive sleep. The demolition went on.
By the afternoon Keegan and his friend were moving the big stuff out to an apartment across the street. I packed in the laziest sick person way possible. I honestly didn’t have a lot of stuff, but what I did have I threw in two boxes Keegan gave me, and left all my clothes on hangers. Keegan and his friend moved my bed first and the couch so that I could literally go from my bed in the current apartment to my bed in next one. As they moved it on the first load, I laid on the floor in my empty room with Monty and fell asleep staring at the ceiling. I watched Keegan and his friend carry heavy things and sweat and noted how interesting faces look when you’re looking at them upside down. Here are some pictures of me during the move.
Day 1. Day 2.
As you can see I’m a big help. Anyway in two days, Amelie and Keegan had everything packed, moved and unpacked, and I laid there watching life walk back and forth carrying boxes over my head. It was a new perspective though and I’m always down for new perspectives. My favorite line from the whole moving experience came from my sister as she was unpacking in her new bathroom and I was laying on the couch counting ceiling popcorn. “Our fucking toilet is leaking!!!!!!” This was after three cabinets fell completely off of their hinges in the kitchen and the sink pipes leaked underneath when you turned the water on. When it leaks, it pours. If I could consume alcohol, I would have played a drinking game called “Drink Every Time Something Breaks” and had a gay old time. Instead I slept or played DJ for Amelie and Keegan while they packed and unpacked–which mostly consisted of me playing Carlae Rae Jenson’s “Call Me Maybe” on repeat. God that song is good.
By Sunday we still didn’t have cable which meant we WERE WITHOUT OUR SUNDAY FOOTBALL and my sister was WITHOUT THE RED ZONE ON ESPN which meant she COULDN”T TRACK HER FANTASY TEAMS ON A PLAY BY PLAY BASIS which was a problem, you can imagine. So we went to a bar with 4,000 TV’s and I felt sad as I watched the Saints lose in overtime and was the only Saints fan in the joint. I still yelled ‘Who Dat’ if ever so quietly. Unfortunately my body felt like it was slowly slipping away from me. An hour later when sitting upright felt near impossible and I felt a migraine coming on, I went home and fell straight asleep. Whatever momentum I had felt that morning was long gone and when I woke up a few hours later I had the migraine of the century, which lasted until yesterday. I didn’t fall asleep until 4 on Monday morning and when I woke up, I was more weak than I’d ever felt. I took Monty outside, but with this new apartment comes a flight of steps to get to ground level. I hate those steps, and I cursed every last one as I climbed them one by one, the way old people do. I threw the ball for Monty a few times, then apologized to him for being a human wasteland and came back inside. I set up camp on the couch and wondered what had happened to my limbs over night. It was like the cement fairy came over night and filled my whole body up. Thanks cement fairy!!
Yesterday morning I didn’t think I felt any worse until I tried to get out of bed. It was really hard to move. Nearly impossible to walk. I didn’t feel like I could make a fist. I wasn’t sad but I kept breaking down in tears, I think because I was scared. This felt different; worse than it’s felt before and I was nervous this time I might actually croak. Usually I just curse the illness, roll back over and go to sleep. Anyway, going to the ER is always a last-case scenario but after talking to Dr. Emils (one of my best friends in her last year of med school), my mom and my sister, we decided it was the best option. At least we could eliminate the possibility of eminent death since I had been getting worse over the week and the iv fluid and steroid would help with the weakness and get the migraine to go down. So Amelie left work early, helped me up the stairs and I cried as I said goodbye to Monty because I really didn’t want to leave him and I was also scared I’d get bad news at the hospital. It was the first time I found myself praying they wouldn’t find anything, because usually I’m looking for an answer. This time I just wanted the normal “We don’t know exactly what’s wrong, but here’s something for your discomfort.” Luckily, that’s what I got. As well as kind nurses and doctors and basically no wait time. A whole other world compared to the New Orleans hospital last January.
Hospital gowns, like mullets, are business in the front and party in the back.
So, that brings us to the present. The good news is I’m not dying. I only feel like I’m dying. Haha. But, that I can handle. For some reason I woke up with swollen joints this morning, so it’s just another reason to take it slow. It’s also a creative challenge to see how many fun things I can do from the supine position. I don’t know what this crash is about, but it’s just going to take some waiting out. The best part through all of it is I realized just how much I didn’t want my sometimes shitty life to be over. I had been pretty down the last week being sick. I felt myself saying “Owell” as a speeding car raced past Monty and me on our walk and I entertained the thought of it taking me out. It was just my dark sense of humor of course, but now I say “No way JOSE!” to that car, and I live to see another day. Even if from the couch. Sorry for the length of this one. Like I said, it’s been a shit show of a week
It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.
I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)
I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.
I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS. For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) andHay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.
It takes money honey.
I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.
I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.
This isn’t just about me or just about other sick people with this illness. Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day. I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.
I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.
I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.
1.The Advice Seeker of things that seem relatively obvious. Does anyone know where I can find groceries? I’m looking for things like broccoli, milk, poultry, cereal and juice. Looking for good prices but also quality food. Any suggestions?
Message me with any info. Thanks!
2. The incredibly angry but mostly uninformed Political Posting Tyrant.Taxes are such bullshit!! Why can’t everything just be free? I wish the morons running this country would ask themselves that. Now I’m going to quote the constitution for you.
3. The Horrifically Offensive Facebooker that doesn’t seem to know it. Is it just me or are pregnant people gross and disgusting?
4. The ball-busting Debbie Downer. (AKA, the person that ends every status with UGH!!!!) Wow, after being stuck in traffic for 2 hours, I come home and step in dog shit. No, I don’t have a dog, my neighbors do. So I wrote them a letter explaining that I’d really appreciate it if they picked up after their dog, that is part of YOUR responsibility as a dog owner, not MINE as your neighbor. UGH!!!!!
5. The Emo Kid Facebooker, dense with cryptic statuses. Yes, I can forgive you, but that doesn’t mean I’ll forget.
6. The Check In Everywhere You Go Facebooker. Mary was at Albertson’s with Who Gives a Shit.
7. The Stay on FacebookMom. Yep, Tommy just shit in the toilet all on his own. Then he asked me to wipe his butt for him. I have never had so much fun wiping someones ass or been more proud to do it!! Just love him!!!!
8. The judgmental Passive Spectator: Has very little facebook activity– mostly just sits back and watches the horror of facebook unfold while worrying about the state of the world.
We’re fucked.
9. The Workout Obsessed Facebooker. Feelin the burn!!! Gonna be so sore tomorrow!! Will write a status about it at that time!
10. The over-eager Bearer of Bad News Facebooker. Just saw a car that was filled with puppies tumble off the road and burst into flames. Will be thinking about them tonight.
I love getting late birthday presents in the mail. Wait, I love getting mail period. For one thing, I think the art of letter writing is becoming extinct, so it’s always pretty special to get something written in one of a kind hand-writing, written just for you. Dear Mary… Anyway, late birthday presents are like those blooper scenes they show during the credits of a movie you liked. Just when you thought it was over–bam! My brother Nick and his wife Estee sent me two new shirts and a skirt and a necklace with a hand-written card, the best! And my sister brought me shopping at Nordstrom. Her and Keegan have kind of adopted me as their 28-year-old child. Keegan even sent me to my room yesterday. I also unpacked my suitcase at their house two weeks ago, the first time I’ve really not lived out of my suitcase since February. All my siblings are like extra parents, each pitching in to help in their own ways and I am really thankful for that. It’s easy for me to forget that my situation could be a lot worse. They have all encouraged me to visit them, and that is a real gift. Anyway, I love shopping and I love new clothes, but it has turned into such a silly thing for me to love, mostly because I never wear normal clothes anymore. I never really go anywhere and I hardly see people besides Monty and my family. My uniform has evolved into leggings and t-shirts–every guys fantasy.
Last week and all weekend was a sick week. Like a sick day, but you know, times 7. I once wrote that I was the mayor of Migraine City, but I am upgrading myself this week to Governor because my head is super angry about something and apparently wants the world to know. Here’s your shot head, let it all out! Every day I keep telling myself I will get dressed in my new clothes and I will go somewhere and I’ll do my hair and makeup and look like someone who has her shit together. But, that has yet to happen. “Tomorrow” I tell myself. Then the song from Annie starts playing in my mind and I bet my bottom dollar that tomorrow there’ll be sun, and I will go out in it! Since I’m in Cali, there is always sun, but when you have a migraine, it feels like if you were to go outside under that bright sun you’d start melting like the witch from the Wizard of Oz. Anyway, the migraine cycle continues, but why am I talking about migraine cycles? I’m even boring myself.
When I’m in the throes of a sick week, I can start to get down. And also start to go stir crazy. So there are a few things I do and a few things I don’t do. Maybe most importantly, I do not watch TV during the day. There is just something undeniably sad about daytime television, and sunlight coming in through the blinds..maybe reflecting off the TV screen? Yuck. The only time I don’t find a sunlights’ reflection on a TV screen depressing is on the weekends when we’re watching football. Exceptions to every rule.
First, I keep a book on hand and I read. I swear it’s like I’ve discovered the joy of reading only last year..at age 27. Pretty ridiculous since I discovered the joy of writing at around age 9. I feel like I’m catching up on all the years that I began books and never finished them. I always associated reading a book with homework, something I had to do. It never felt like I had a choice in the matter. As soon as book reports became part of my schooling in 6th grade, it became my goal to see how little of the book I could read and how high a grade on the report I could get. Unfortunately, I work really well under pressure–so the night before it was due I’d skim through the book, find the important parts, and write a flowery report. I almost always received A’s on them. I was actually proud of myself for being able to complete the work this way! What an idiot. Anyway, now that I have really experienced what getting lost in a book is like, I feel like I have years of catching up to do. So that’s partly what I’m doing. Especially because it’s not sad at all to read while sunlight is coming through the window. In fact it’s the most fun to go outside and read. Monty and I had been going to the park daily, but I crashed mid-week and we haven’t been back yet. Anyway, right now I’m reading Wild by Cheryl Strayed. A true story about a woman who lost her way and decided to hike the Pacific Crest Trail by herself, with no experience. Truthfully, it’s a little difficult to read because she is in a lot of physical and emotional pain so far, and I like reading to carry me away from real life, so in that light it’s not been as fun to read as Gone Girl but I’m just about 1/3 in, so I’ll see how the next 50 pages go.
The second thing I do is create something. It can be anything from a four line poem to a line drawing. The goal is not to create a masterpiece work of art. The goal is to let your soul do some talking. Sometimes what you make will be crappy and sometimes you’ll surprise yourself. But the thing is, now no matter how sick or worthless I felt today or the fact that I never got dressed in real clothes, at least when someone asks me what I did today I can say “I wrote a poem,” or “I drew a picture of a stupid cat.” So now today was not a complete waste. Here are some simple rhyming poems.
*I am tired
But do not sleep
I am sad
But do not weep
I close my eyes
And count to 10
If I still feel it
I’ll do it again
Until the clouds part
And the dark clears
I’ll think of my loves
And not of my fears.
*In the corners of my mind
In the absence of a dime
I think about home
In a house that isn’t mine.
*At night I roam
through consciousness alone
Would I have chosen this
If I would have known!
*At least at the end of day
Where I never got dressed
I can say I wrote a poem
And that’s something I guess.
Normally I hate rhyming poems, and I don’t necessarily love these. But, they’re what came out. So I let them. Because that’s what my soul had to say today, and it doesn’t really matter whether it’s good or bad. It’s the fear of making something good or bad that is dangerous. Once I let that fear go, I kind of free myself. The worst that can happen is you write a shitty poem or you draw a shitty picture. Certainly there are worse things! Either way, you’ve got something to look back on or laugh at or talk about, and you weren’t completely at the mercy of illness.
.
I drew the above drawing a few days ago. It turned out to be one of my favorites…drawn on a sick day where I never got dressed. It started with a very simple shape; a leaf. Then I repeated the pattern and this is what turned up. I had no idea what I was sitting down to draw that day, but it’s another example of letting your soul speak. Or stillness speak. I just know that when I designate time to letting things come through me, I am usually surprised. I end up creating something I never could have thought of myself. It’s strange, the way sometimes your dreams can be insanely more creative or smarter than you are in real life. I guess it’s the subconscious at work. This one is titled “I Don’t Normally Look Like This” and is for sale for $10.
Anyway, that’s been the last 7 days. Fingers crossed that tomorrow is migraine free and filled with more energy and I get to wear some happy clothes and run errands like humans do. If not, well then…it’s back to the drawing board.
I’ve been on a non-fiction kick for a while now. But in Barnes and Noble the other day, I saw this black book..a simple cover with what appeared to be loose lines across the dust cover. On closer examination I saw that it was hair, wrapped around the book spine with wisps across the front. I don’t know what made me pick it up other than the fact that I am completely guilty of judging a book by its cover and I do it all the time. (Books. I’m talking books.) Like usual, I read the back, then I read the flap, and then the first few sentences of chapter 1. It was enough. I went for it. I didn’t let my typical indecisive nature get the best of me even though I’ve never been one for murder mysteries or suspense thrillers. It also then struck me I’ve never actually read a murder mystery or suspense thriller–they’ve just never really appealed to me. But I’m trying to challenge my uniformed notions about things. Something about this one grabbed me, so I grabbed it back.
.
I don’t know exactly how to do a review of literary suspense without giving things away, and there are so many things I could give away. Muah hah hah. But don’t worry I won’t. That’d be irresponsible so I won’t go far into detail. All I know is I took Monty to the park, sat on a towel in the sun and began reading. And even though I’m in sunny California, I could feel some kind of anxiousness growing in me, a glimmer of discomfort. It felt like it had gotten cloudy, like it was about to storm and I should go indoors. But reading the book indoors didn’t make me feel any more secure. It also didn’t stop me from reading every chance I had. I couldn’t put it down. Half of this book was read at 2 am with one eye open, because I was so tired that when both eyes were open I saw double. With one eye closed I could keep reading without double vision and without falling asleep. I was so exhausted night after night and I love sleep. I’m really good at it. But I needed to know what happened to Amy Dunne. She went missing on her and her husbands 5th wedding anniversary; not quite a “poof, gone” type of thing, but close. A strange trail of evidence and clues leftover, leaving me and most of the book characters scratching their heads. All but one.
The story is told through two voices; Nick Dunne, the husband, and via the missing Amy Dunne’s journal entries where we learn about their life together: how they met, their losses, and their recent move from New York City to the midwest along the Mississippi River. Both characters resonated quickly with me. I’ve had similar conversations and conflicts in my relationships, and I knew a lot of the feelings Amy Dunne was describing. But I also knew I was going to be thrown off simply because I was barely half way through the book and yet Amy had been missing 7 days, the cops had their killer, and something about Nick Dunne’s story felt wrong, and yet I wanted to believe him. Sometimes. And then I’d change my mind. It’s pretty classic in the “Crime rocks a small town” type of setup; the community gathering for support, the good cop/bad cop routine, press conferences with Amy’s parents in tears, and t-shirts and flyers with a pretty, missing wife on them. It’s all reminiscent of those stories we see on the news; Lacy Peterson, Natalie Holloway. The ones that sort of dominate our TV’s for a while, make Nancy Grace’s vains pop out, and then, kind of like Amy Dunne…leave, unresolved. Come to think of it, I need to google what happened in the cases of those women, because I only remember the sudden onslaught of news and anger and finger pointing, but I don’t actually remember hearing how it ends. America loves a pretty, missing woman. And the book touches on this phenomena too.
The most interesting part of the story for me is that the reader is no longer what we normally are in cases like this; the spectators. The jury. We’re used to seeing the stories on TV, seeing the pictures, hearing the accusations, and we often makes up our minds quickly about who’s at fault and who to feel sorry for. This time, we’re on the other end. We get to hear how police go about business like this. How reporters and the media can shift the people’s minds over night, if not faster. (It’s like being on the inside of a presidential campaign, I imagine.) We also get to hear the advice and rules a lawyer will give you when a country of strangers has their minds made up. The lawyer was my favorite character. I could see and hear him perfectly. I’ve seen commercials with this man, to a T. You probably have, too.
I finished the book about an hour ago. I have to say, I’m glad it’s over. I was getting tired. Not tired of the book, but tired from staying up so late every night trying to finish it. And a little tired from the unnerving nature of the story. I’d been talking about the book to my sister since I was only a few pages in. I tried to finish it before she left on a business trip this morning so she’d have something to read, and I really tried. I almost made it. But I didn’t. I told her to just buy her own copy at the airport. “It’s worth it.” I don’t know how I feel about the ending. I just know I’m ready to go back to the park with Monty and actually enjoy the sun this time. There was something about reading that story amid green grass and perfect weather that didn’t add up. It’s like playing Radiohead at brunch. It just doesn’t match. I wouldn’t call getting lost in this book particularly pleasurable in the normal sense. It was uncomfortable at times, upsetting, unsettling. But so good, so well written, utterly surprising and disturbingly real. I don’t know how author Gillian Flynn did it, but props to her, because it rocked me, and a few million other readers. It got under my skin and stayed there, and probably will for a while. As uncomfortable as it could be, it was really fun to read, fun to think about it even when I was doing other things. It kept me coming back for more more more and I kept wondering how how HOW in the hell it would end. I’d assembled at least 10 potential conclusions; none of them were right. I admit though I rarely get these things right. I only know it made me fear women and it made me fear men. It is a work of fiction, but the parts that stick have delivered something very true, very real. I get the feeling that even when I sleep tonight, finally able to shut both of my eyes at a normal hour, this book will still be swirling around in there. (Amy Dunne is also a restless sleeper!) It’s that good. It sticks. Even after it’s…gone. Get it? Yeah, you get it.
Health, Happiness, Gone Girl.
*P.S. Rumor has it Hollywood bought the rights to this story. Read it before they kill 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.
I think my favorite present to both give and receive is a book. And not an e-book, not a kindle or a tablet thingamajiggy. A real, tangible book with pages to flip through and words that you underline and notes in the margin that you come back to later. There is something necessarily palpable about a book for me. Maybe I just really like turning pages, but I don’t think I’ll ever make the switch to electronic literature. I know it costs us trees, but I kind of feel like a tree would be happy to be a book. If only trees could talk. OK, anyway, I received a book from my mom for my birthday, and I’ve been lost in it for the last 4 days. I kept telling myself I needed to write, but my urge to read was stronger. I had to finish it before I could do anything else. I think it may be one of the most important books I’ve read as of yet.
.
“The Untethered Soul” is written by Michael Singer and I’d never heard of it or him until I began reading. The book is 181 pages but is densely written and covers everything from consciousness to identity to happiness to God to death to Christianity to the Tao. I really don’t know how he combined all of these topics so succinctly and covered them with such perfect simplicity, but he did, and it all made perfect sense. Every word. Sometimes I’d read a paragraph over and over, not because I didn’t understand, but because it felt so good to read the words. It was like light would suddenly pour in the room, and with each page (each TANGIBLE page) I felt more clarity, maybe even more happiness. At least more awareness of it. There is such a wide variety of topics he covers and methods associated with them, but he ties them all together seamlessly to teach one huge and vital lesson; to know yourself, and to find bliss. It will be difficult to summarize the whole thing up on just one page..this may need to be a two parter. So I’ll just cover a few topics that really captured me.To begin with, you can’t fix the world. You can’t fix other people, and you shouldn’t try. But you can become the purist and most open version of your Self, and that is your gift to the world. You will be the most successful and biggest help to humanity by knowing yourself truly, and waking up–becoming conscious. So long as you are unconscious, reacting to external factors, hiding behind fears and anxieties, letting that voice in your head dictate important matters, you cannot be of help to the world. You are stuck in your mind, and so you can’t go any further or higher up than that. Not until you wake up.
Like Tolle, Singer writes pretty extensively about how to answer the question “Who am I?” …a question I constantly ponder but feel my answer always comes up short. I am Mary Gelpi. Well no, that’s a label given to me by my parents. Take it away and I’m still here. Who am I? Who is the Self? It was more poignant and enlightening to hear him explain who we are not. Some we’ve been over before.Ready? You are not your thoughts. You are not your emotions. You are not the things that happened to you. You are not a gender role. You’re not even your personality. And here’s the big one: You are not that voice in your head. In fact the journey to discovering your self (which is who you are) involves the attempt to eliminate that voice. In other words: telling it to SHUT. UP. And in the meantime if you can’t get it to, DON’T LISTEN TO IT. For the love of GOD don’t listen to it. Think how many times that voice in your head has been wrong…a lot. But we continue to reach out to it for advice and guidance as though it were an intelligent shrink. It’s not, it’s noise. Just so we’re clear, I’m not talking about voices plural in your head. That’s another disorder altogether and we don’t have time for it. I’m talking about the voice in your head that is constantly chattering. If you stop reading this right now and look around the room, just wait a few seconds and listen. It will begin talking. About anything. Stupid things. Funny things. Memories. To -Do lists. It’s noise. It’s a lot of noise that isn’t really propelling you in any direction on your mission. This attempt was among the original purposes of things like meditation and yoga. It wasn’t to pray or to exercise–it was to find inner stillness, the center. The center is where “You” reside. Behind the chatter, judgments, and noise is your soul or spirit, or whatever you’re comfortable calling it. It’s quiet there. It’s the part that doesn’t die. It’s the center of your consciousness, or what Zukav called The Seat of the Soul. (Also, another awesome book) So this is how the book begins; with the search for the self and a map of where to go to find it. Once you’re able to pull back the curtains on all the things that don’t define you, you begin to feel and hear the real you. Your higher self. Perhaps he puts it most accurately with this definition: the simple awareness of being aware. Or..You are not the thinking mid; you are aware of the thinking mind.
“When you contemplate the nature of Self, you are meditating. That is why meditation is the highest state. It is the return to the root of your being, the simple awareness of being aware. Once you become conscious of the consciousness itself, you attain a totally different state. You are now aware of who you are. You have become an awakened being. It’s really just the most natural thing in the world. Here I am. Here I always was. It’s like you have been on the couch watching TV, but you were so totally immersed in the show that you forgot where you were. Someone shook you, and now you’re back to the awareness that you’re sitting on the couch watching TV. Nothing else changed. You simply stopped projecting your sense of self onto that particular object of consciousness. You woke up. That is spirituality. That is the nature of Self. That is who you are.”
There was one chapter that I re-read a few times, because it really challenged my notion of happiness. It asked this question, which I find myself constantly asking: Is happiness a choice? I have always believed that we are susceptible to our circumstances, therefore happiness isn’t really a choice because we aren’t in control. We can’t help it when bad things happen. But Singer absolutely disagreed with that, and I’m pretty sure he beat me. Just because we aren’t in total control doesn’t mean our happiness isn’t in our hands. If our happiness isn’t up to us, who is it up to? Other people? Circumstance? Conditions? No wonder we’re not happy! You can’t rely on anything or anyone else to cause your experience of happiness. It is entirely up to you. If you make the commitment to be happy, it is to be unconditionally happy. But, that means acceptance of the present. That means erasing your version of what you think your life needs to look like in order for you to be happy. That’s something a lot of people don’t want to give up.
I know what you’re thinking: What if my family dies in a plane crash? What if a bird shits on my head on the way to work? I can’t help that! Of course there will be challenging events in your life, you already know that or may have already experienced them. It doesn’t mean you don’t grieve appropriately and process the hard times. But it also doesn’t mean that you stop, that you can’t be happy again and continue to live a beautiful life. (Just ask my mom, she was widowed twice, but has once again found happiness.) That’s part of the commitment. You have to accept what happens in the present, deal with it accordingly, and release. Keep going. There’s no hanging on to the past allowed. It will never change by you clinging. There’s no cringing about tomorrow allowed either. You’ll deal with tomorrow when tomorrow comes. And think about it. Does you reacting and getting upset and yelling change the fact that a bird shit on your head? No, it doesn’t. Clearly our reactions are not only silly, they’re unintelligent. They serve no purpose. They’re just noise.
Your definitions of desirable and undesirable, good and bad, all come about because you have defined how things need to be in order for you to be okay. We all know we’re doing this, but nobody questions it. We think we’re supposed to figure out how life should be, and then make it that way. Only someone who looks deeper, and questions why we need the events of life to be a particular way, will question this assumption. How did we come up with the notion that life is not okay just the way it is, or that it won’t be okay the way it will be? Who said that the way life naturally unfolds is not all right?
This is still a challenging notion for me to process, but I know it’s right. This is not to say that making unconditional happiness your mission is easy–it isn’t. It’s probably the hardest work you’ll do. But I’ve decided to take this mission on. I certainly have the time, don’t I? Maybe we all do. But we fill it up with a lot of stuff. A lot of Kardashians and O’Reilly Factor and arguments and anger and work and chaos and noise. I think it’s time to slow down. Time to go IN, not out, and find that little nook where our soul is, and try to please it. What more important work could there be? Chopra says that this is a recreational universe and that we were meant to have fun here. We weren’t meant to suffer! So I think it’s time to play. Today is August 22nd. It’s my dad’s death day. Death birthday? I wonder if they celebrate the day you die in Heaven the way we celebrate birthdays here. Anyway, my dad was one of the happiest people I knew, and that’s what everyone else had to say about him–How positive and kind he was. This book reminded me of him and his constant disposition of joy, happiness, and love. I’m going to start my work toward consciousness and inner peace with him in mind and this book as a guide, or at least a solid starting place. I highly recommend The Untethered Soul if you’ve been searching for a deeper purpose or listening for a higher calling and need a little help getting started. This is a really good road map to begin with.
My favorite line from the book: It is actually possible to never have another problem for the rest of your life.
Health, Happiness, and Real, Tangible Books.
*My favorite underlined phrases from the book. :)
What it means to live spiritually is to not participate in this struggle. It means that the events that happen in the moment belong to the moment. They don’t belong to you.
The only way to inner freedom is through the one that watches the self.
It’s bad enough that your happiness is conditional upon your own behavior. When you start making it conditional upon other people’s behavior, you’re in serious trouble.
It is not life’s events that are causing problems or stress. It is your resistance to life’s events that are causing problems or stress.
If you want to understand stress, begin by realizing that you carry around with you your own set of preconceived notions of how things should be.
Imagine if you used relationships to get to know other people, rather than to satisfy what is blocked inside of you.
When a person is dealing with their own fears, anxieties, and desires, how much energy is left for dealing with what’s actually happening?
The truth is, everything will be okay as soon as you are okay with everything. And that’s the only time everything will be okay.
I’m thinking about that number 28. I’m thinking about the word “adulthood” and whether or not I’ve reached it. The number sounds like it belongs in that category, but my life doesn’t really feel that way. I don’t recall exactly what I thought life would be like at 28, but I know for sure, this is not what I expected. I always thought I’d be married with kids by now. (HAHAHA.) I expected adulthood to be so organized and grown-up and filled with smart people who had the answers and knew exactly what they were doing. But I see now, adults are often lost and they don’t have it all figured out yet either. They still get shit-faced and throw up sometimes. There are still social hierarchies and corresponding dramas. They still make mistakes and are learning their way through it. My mom still encourages me to eat vegetables. And I still fantasize about my wedding day and love Disney movies. There are a lot of things that I thought would be different, that aren’t. And there are a lot of things I didn’t expect to still be doing, that I am…
I didn’t still think I’d be…
*Eating at the kids table at Thanksgiving and other family events. I am wondering at what age I will graduate to the adult table. I’m going to celebrate so hard on that day.
*Sitting on a bathroom counter in my pajamas popping zits in the mirror, or what I think could be a possible zit one day and subsequently wrecking my face.
*Calling my mom with questions when I catch a cold…(which is now just me walking into her room, you know, cause I live with my parents now…)
“Wait do I need a decongestant or an expectorant?”
*…Living with my parents.
*Taking bubble baths. Still prefer them to showers…any day.
*Borrowing all my sisters clothes.
*Still getting excited as hell when Christmas comes around.
Yes.
*Turning off my bedroom light, running lightning fast and jumping into bed so the man underneath it can’t cut my feet.
*Getting questioned about my outfits by my mom. “You’re sure you want to wear that to dinner?”
*Talking to girls about boys and boys about girls. It’s been the same conversation since high school: girls are kind of crazy, boys are kind of dumb.
*Watching The Little Mermaid and singing “Part of Your World” really loudly. Every time.
Part of your WORRLLD!
*Giggle when any of my friends say the word penis or talk about one. It’s shameful. I know.
*Be thoroughly entertained by bubbles. (Especially if Monty is around)
Did someone say bubbles?
*Having my grandma play with my hair.
*Wondering the meaning of my life. Thought I’d have it figured it out by now..
…None of these things did I expect to be still be partaking in and/or enjoying at 28. When I was in middle school, I remember telling a friend that I wanted to be married by age 22 and having my first child at 24…basically because it just sounded good. I was 12, and stupid. But truthfully, it was an arbitrary goal anyway. When I was young, I thought that was the meaning of life: To grow up, find a husband, and have babies. And maybe it is. Those are still things I want. I hope to marry a best friend and not blow it and I’ve always dreamed of becoming a mother. But now I see there is more to life than that. I think. I actually have no idea. I just know that right now, in this moment, it’s not my time to be a wife and mother. It’s a time for me to get healthy and stronger, to find some certainty, get to know myself a little better, trust myself a little more, and become who I am meant to be. Joseph Campbell says that “The privilege of a lifetime is being who you are” and I think so many things in the last year really threw my identity around and left me slowly piecing it back together, which I will continue to do. I trust that the things I want will happen in time, but I am careful not to put aside happiness while I get where I’m going. I am right here, so right here is where I should be happy. I have high hopes for 28. I never expected that at this juncture of my life I would be where I am, and in truth, this is not what I would have chosen. But the fact that I didn’t choose this, I didn’t seek it out–makes me trust it more. I was headed in a completely opposite direction, and yet here I am. It tells me something else was at work. I am done questioning it. I am done being mad at it. I’m ready for the next chapter. Bring it on, 28!
Remember your first perfume? Mine was Malibu Musk, age 10. It came in a can the color of wildberry pop tarts and looked like it could emit either aerosol liquid or cheese. The smell was exactly as it was named; tropical and musky. Something that would probably make me nauseous if I smelled now. But when I was 10, I doused myself in the stuff. I loved it.
Musky.
But, this isn’t a post about perfume. It’s about perfume commercials.
It’s happened more than once. I’m watching some intellectually stimulating show like The Housewives of Orange County or 16 and Pregnant when it starts; the television advertisement for the latest perfume I’ve got to try. Or smell. I get that ad execs must have to really rack their brains for these commercials, because they are trying to effectively sell a product based purely off your preference and sense of smell; a sense that as of yet, we haven’t figured out how to transcend through television. So I guess in some attempt to compensate for the void in technology, they decided to just confuse the shit out of everyone. The commercial will typically involve prancing A list actors, trench coats, flashes of light, weird indie music, and sex. Lots and lots of sex. OK so it’s not confusing. Sex sells. I get it. But every time one of these commercials comes on, it doesn’t leave me thinking of sex. Instead I kind of feel an intense urge to giggle. And not like a sexy laugh either–That nervous, Michael Scott giggle, and something tells me that is not the reaction they were going for. It’s not even just the production, it’s the names of the perfumes themselves. Angel. Guilty. Covet. The whole shebang. It’s kind of how I feel about the underwear I buy from Victorias Secret–Where one day I’m folding laundry and I realize I have underpants that say “University of Pink” on the butt. (True story) I get what they were going for, I just don’t think they got it right. What would Donald Draper say if he saw these? Who would he hit?! Here is the most recent one I saw that had me super weirded out. Exhibit A:
OK so the takeaways here:
Mediocre actors make even more mediocre singers.
Eva Mendez lives in the future where subways look like aerodynamic toaster boats.
Something about circles?
This Angel Perfume stuff apparently gives you an orgasm when you smell it. WIN!
Remember when Sarah Jessica Parker released her own scent? It was called Covet. And the commercial was really bad.
The Takeaways:
Did she really think she could get away with stealing that big ass bottle of perfume? That thing is GINORMOUS.
Those eyes at the end?–Those are what you call Crazy Eyes. (See also, Ramona from NY Housewives)
That last scene reminded me to lock the doors.
The Takeways:
Someone is definitely guilty here..of LIGHTING MY CAR WHEELS ON FIRE.
I think we just found Ghost Riders wife.
Did you see that? She broke like, 15 common street laws.
This is Prada’s commercial for “Candy”. I actually appreciate this one. I’ll just go ahead and tell you the takeaway for it now: Big. Pink. Panties. Watch:
Here’s Nicole Kidman’s famous commercial for Channel #5, though it looks more like a movie trailer for Moulin Rouge. The budget for this little production was $42 million and funded exclusively by Channel. That’s right. FORTY TWO MILL.
The Takeaway: It would have been cooler if they just lit $42 million dollars on fire :)
I just threw this one in the mix because..dude..FORTY TWO MIL!
The 80’s know what’s up. THIS is a how a perfume commercial is done. I heard that Charlie is actually a pretty stinky perfume.
OK last one. This is pretty scandalous, especially for the 90’s. It’s for Calvin Klein’s Obsession. And um, is that you Justin Bieber? http://www.youtube.com/watch?v=PjH9YsKZTp0
Health, Happiness, and I just watched perfume commercials for the last two hours and now I’m really contemplating the meaning of my life.
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.
It’s been almost 7 days and 12 hours that I’ve gone without internet and I am gently reminded just how much a product of the multi-tasking, turned-on tech generation I am. I think going this long without wi-fi is my generations equivalent to camping. I’m pretty sure they call this roughing it. And I’m pretty sure my parents would call me a pansy.
This is an easy problem to fix, as most public restaurants and coffee shops have free wi-fi these days but since I’ve basically spent the last seven days IN BED or using some other piece of furniture as though it is one, I haven’t been able to take my little coffee shop trips like I’d planned.
I’m not exactly sure what’s going on, but since the day after I arrived here, I’ve been crashing about an hour after I wake up. Apparently my adrenal glands aren’t functioning properly and I’m bottoming out after I wake up. And not just “Gee I’m sleepy I think I’ll lay down for a bit” kind of crash. (Since becoming sick I have no idea how a power nap works. I just know 15 minutes could never ever ever ever be enough when I’m in a crash.) It’s more like hitting a brick wall where the only thing to do is go back to bed. If that sounds depressing, well, yeah, it is a bit. But there is no such thing as faking it. I made it to dinner at my cousins Shawns house after three days in bed but didn’t feel like I could keep my head up to play cards after dinner. And we ALWAYS play cards after dinner. That’s what you do in Colorado. That’s what you do when grandma is around. And that was just one of many things I’ve had to miss out on since arriving, which is very challenging emotionally for me. I’m the youngest of four, so basically since birth it’s been my prerogative to just not miss out on anything. But that affect right there is one of the hardest parts of this illness, many times even harder than the physical pain itself.
A few nights ago after spending the last two days straight in bed, I felt like I started to lose my mental strength. My siblings had left to go visit with old family friends who I’d really like to have seen but I just couldn’t make it happen. When I’m sick like that I’ve always felt it’s best to be alone since I’m not a ton of fun to be around and basic “sounds” really bother me. But then after everyone left, I got sad and wanted them to come back again. All of my siblings are here and we have taken over my grandmas little house. My brother has been sleeping on an air mattress in the middle of the living room–and this has really worked out for me, because I basically get to be in bed while simultaneously hearing to the conversations and sounds and chaos that ensues when more than one Gelpi is in a room together.
The truth is, I find myself looking for an answer to all of this and there often isn’t one. There are a lot of questions I have about my life that most of the time I am able to let go unanswered. But during those times like a few nights ago, I can’t escape the questions so easily, and I feel anger about them because it simply doesn’t make sense to me. I was angry that most of my vacation has been spent lying down. Angry that I was missing out on my favorite activities. Jealous of other people’s health. Angry that I rarely get to see all my siblings at the same time, and now here we are all together but I can barely get out of bed. Marc Nepo says it’s our job to make sense out of our pain. So that is what I tried to do the other night as I did the only thing I promised I would do that day–take a bath. Big day for Mary!
During dark times like that, I don’t often have big revelations or hear the voice of God. I just let myself feel the pain and then remind myself that tomorrow is another day and say some prayers. There are two prayers I say when I’m all out of juice and all together they make up three words. And here they are: “Help” and “Thank You.” When I’m too tired to spell it out for the universe, (and let’s get real, I shouldn’t have to spell it out for the universe) those are the prayers I say, and honestly it feels like enough. The help prayer is for strength and the thank you prayer is for my family, particularly my siblings. They have taken phenomenal care of me since arriving, and my sister Amelie has been force feeding me protein every two hours. Even when I’m cranky and don’t feel like moving, talking, or eating. They bring me home leftovers and pick up my prescriptions and lie to me when I ask them if the party I missed out on was any fun. Each of them is an invaluable gift to me. Sometimes I think about my life and think maybe I’ll never get married. Maybe I won’t find “The One” or my soul mate or whatever they talk about on Sex and the City. And then I watch us at work together and it hits me that maybe I don’t need that. Sometimes my mom and siblings feel like all the soul mates I could need. (Monty too of course) That being said, I’m sure they’re all hoping that one day I’ll be able to sustain myself and won’t require an air mattress in the middle of their respective living room floors and I am hoping for that day too. But there is just a lot of love between us and often I feel like my glass is overflowing with the stuff that matters. And pain and exhaustion aside, that feels pretty good. At the end of the day, you ask yourself; do I have what I need? And I do. I have modern medicine and the smell of my grandmas house, 10 more minutes of free wi-fi and unconditional love and the answer is clear. Today was hard, but I had enough.
Monty and I have arrived in my other hometown- Grand Junction, Colorado. Never heard of it? Don’t feel bad. I remember in my seventh grade geography class everyone feeling a little defeated when we opened our books and saw that Grand Junction wasn’t even marked on the map. It’s grown a lot since then, but it still feels much like the small town it felt like as I grew up here. It’s hard to explain but there is a certain look to Grand Junction. It’s almost distinctly indistinct. But when you wait at the gate in the airport to come here, it becomes slowly evident just where you’re going. Suddenly there are a lot of teva sandals and drawstring cargo Capri pants–on women and men. I’d call the fashion here “Mountain Casual” with a few embellishments here and there. The thing is, it’s a very genuine town. There’s nothing really excessive or fancy about it and that’s how they like it. If Fisher Island is a red Ferrari, Grand Junction is a light tan, mid-sized sedan. A Ford Taurus maybe. I love coming here because while there are new additions every time I arrive, (like The Olive Garden or Lane Bryant) it always feels the same. It has this smell that has never changed–a mix of cut grass and wet clothes in the washer machine. In a word; clean. Even the water has a certain taste to it-also very clean. For comparative purposes, New Orleans water has a particular taste from the tap too- something like garden hose mixed with chlorine and mud. And that is one reason you don’t drink water from the tap in New Orleans. Not unless you’re a real risk taker.
Growing up here I kind of despised the place. I dreamed of big cities with bright lights and tall buildings that stayed open past 10 pm. Cities that had stores like the Gap and Abercrombie and Fitch. In my young mind, what made a city cool and important was whether or not they had tall buildings. Grand Junction has one tall building; Alpine Bank. It’s ten stories. I’ve gathered that most youth have a love/hate relationship with the place they grow up, especially if that place is particularly marketed as “A great place to raise a family.” And Grand Junction is just that. Very little crime. Quality, free public education. Beautiful scenery and four distinct seasons- none of them extreme. No earthquakes, hurricanes, tornadoes or blizzards. It snows roughly 5 times throughout the winter, just enough to make it a novelty and exciting. I recently heard that Grand Junction made the top 10 list of US cities in which to retire, which may help explain why being a teenager here is less than exciting. But I look at it now with fondness. It may not be the cultural capital of America or boast the best cuisine, but it’s a beautiful, clean place with really good people. By this point in New Orleans, the heat achieves a whole new set of adjectives. In June it’s terrible and unrelenting. In July it’s suffocating and oppressive, unfair even. It will stay that way until late September. So we’re in a mountain town now that actually cools off at night, and it feels good to be back.
Monty and I are staying at my grandmas house. I love staying here because much like the town, it always looks, feels and smells the same when I walk in the door, and there’s some kind of comfort in that. It’s the most organized and clean house and it’s always been that way. Everything has a place and often a label; your toothbrush, playing cards, scrap paper and “hand cream.”
See?
Also nothing is wasted. Nothing. (I’ll expand on that next time) I gave her my word that Monty would stay off of the furniture, so when he pawed at the bed last night with the look on his face like “Are you going to scoot over or am I just going to have to slowly push you off like normal?” I told him “Sorry buddy, not at Grandmas’s house.” He seemed to understand that sentiment because he grunted and then laid down in the hall under the swamp cooler. Oh, that’s another thing. Swamp coolers. The whole goal of keeping a house cool in Louisiana is to keep the moisture out of the air since most days are boasting at least 90% humidity. Here, it’s a desert climate, and you’ll notice large boxes on the tops of all the houses. Those are the swamp coolers. They keep the air cool by actually pumping moisture into it, the exact opposite mechanism of the south. And there’s our science lesson for the day.
On an another note, I’ve basically been crashed every day since arriving here. We flew through Dallas and a huge storm kind of threw flight schedules out of whack resulting in a lot of cancelled flights and a whole lot of angry people. At first I was stressing because I was worried about Monty getting impatient. Then as we sat there I realized, impatience and irritability are much more human traits than dog. Monty had no idea that our flight was leaving hours later than scheduled, or didn’t seem to mind anyway. He laid there like a champ, like this.
.
And he brightened the moods of a lot of other delayed and restless passengers. As one lady noted, “He’s therapy for us!” and then she scratched his belly for the next ten minutes. We didn’t end up arriving until midnight that night and overall travel time ended up taking nearly 12 hours. So my body has been angry at me for the last 3 days and I’ve done very little but rest and eat hearty dinners with my large extended family. Today is the first day I haven’t crashed immediately after waking up, so here’s hoping. I went to bed at 8:30 last night. It was still light outside. What a crazy life I lead.
1. The “You Spend Too Much Time With Your Friends and Not Enough Time With Me” Fight. It’s not that I hate your friends, I just think they’re stupid and don’t really want them around.
2. The “You’re Terrible With Money” Fight. Did we really need these $20,000 life-size Rock ‘Em Sock ‘Em robots?
Yes, yes we did.
3. The “I’m Allowed to Talk Shit About My Family but YOU BETTER NOT” Fight. Excuse me, nobody calls my sister a slut but me.
4. The “You Drink Too Much/Smoke Too Much/Work Too Much/Play Video Games Too Much/Sleep Too Much” Fight. You do all the wrong stuff, too too much.
5. The “ANYTHING Regarding Facebook” Fight.
Who’s that slut who wrote on your wall?
Why haven’t you changed your relationship status?
Why aren’t I in your profile picture?
Why are you still friends with that person?
Why won’t your dad accept my friend request?
Who is Brittny and why did she poke you 2 years ago? Defriend her. NOW.
6. The “You’re Always Tired When It’s Time for Sex But Wide Awake When the Kardashians Come On” Fight. Come on, you know you love Scott.
Nuff said.
7. The “You Give Terrible Presents” Fight. Awesome. Another candle. Thanks babe.
8. The Failure to Agree on a Show You Both Like So You End Up Watching Stuff Neither of You Really Likes Fight. Oh look, No Reservations is on again.
9. The “I Shouldn’t Have to Ask You To” Fight. Because you should be able to read my mind by now.
10. The “You Have Terrible Phone Etiquette” Fight. There’s this thing. Called a phone. Try it out…
11. The “If You Like It You Better Put a Ring On It” Fight. Because nothing sets the mood for an engagement like the threat of a breakup. Or physical harm.
Whoa Oh Oh Uh Oh Oh Oh
12. The “I Was Lying When I Told You I Didn’t Want Anything for My Birthday and You Should Have Known That” Fight. You could have at least gotten me a card. God.
13. The “You’re Nicer to the Dog Than You Are To Me” Fight. Well he’s a better listener!
Tell me. Everything.
14. The “I Went Through All Your Shit and Found Something That Makes Me Not Trust You Anymore” Fight. You never told me you ran track in high school.
15. The “If I Didn’t Pick Up After You, Our Apartment Would End Up on Hoarders” Fight. Why do you put your clothes next to the laundry hamper?
FibroM.E.-Awesome 