I’ve been hanging out with a lot of trees lately. I take Monty on walks in the hills behind our apartment. It’s where we hear the coyotes howl at night. I don’t know where they go during the day. The more I’m around the trees the more picturesque they become. Suddenly I find myself staring at one tree for a really long time. It’s just standing there, its leaves making gentle sounds, and I feel captivated like I’m watching some kind of brilliant theatre. It’s just a tree! But hang out long enough with them, and they share a little wisdom. I started photographing them on my phone because…I felt like it. And my phone is more like a camera with phone capabilities.
When I was a kid I used to think that wind was caused by trees. In fact I may have thought that up to an unforgivable age, but science was never my strong suit. But in my simple brain, since when it was windy I would hear the rustling of branches and leaves, I equated wind with tress. Finally during a dead, wintery day in Colorado, the cold blew against my face and I looked around at the dried up trees around me. There were no leaves rustling, the dried skeletal branches cracked, and it was clear that wind came from somewhere else. Currents cause wind, which in turn rustles the leaves. The real culprit was something invisible yet immensely powerful. So yesterday I sat in the sun and listened to the leaves rustle while Monty chewed a tennis ball to bits. I watched as an invisible current moved through everything and it struck me why I thought the way I did about wind as a kid. It also had me thinking about human beings and our respective passions and purposes. When you’re really excited about something, whether its writing or painting or singing or chemistry…it doesn’t really matter what…there’s something greater moving through you and guiding the art form. In fact I think that’s one way to define genius, or greatness or expertise– opening oneself enough to allow something invisible and quiet to move through you, leaving either art or authenticity in its path, and each time raising the bar. I don’t see being creative as only limited to the arts. I think there are creative ways to do math, and practice politics, and learn history. There are also creative ways to love someone, dress yourself, and give gifts. It hit me there under the sun, that we human beings are the trees. The creative and appeasing truth is the current, and individuals are just the rustling leaves making the noise.
“Art is the lie that enables us to realize the truth.” -Picasso
I could tell you a lot of things about my life right now. That once again it’s 4 am and I can’t sleep. That once again Monty has gas but I love him too much to kick him out of the room. That the Chinese doctor told me not to take my pills today and so I haven’t. I feel the effects of it. I have some fear about it. Some hesitation. But I have the same fear of a life dependent on pills, so either way it’s fighting demons. I don’t mind being awake when the world is sleeping. So many days I’ve missed out. Slept through. Called in sick. Night is my time to take life back. I could tell you my music of choice at night when I can’t sleep–lately it’s Tchaikovsky (Swan Lake) but tonight it is Radiohead (In Rainbows) and I’m deciding whether to keep squinting hard and trying to force sleep or to give up. Give in. But since the only cure for insomnia I have found is waking up, I give in.
When I open my computer to begin, a fly immediately lands on the screen, undoubtedly drawn to the light of the monitor. When I scroll the little mouse arrow under him, he jumps. Flies away a second. Then he comes back. I play “tag” with my computer mouse and a fly for probably way too long and smile at this activity. What makes me smile more is that we have this big joke in my family that my dad would be reincarnated as a fly. He used to do this hilarious impression (often at fancy dinners, with no shame) of a fly, rubbing it’s little legs together the way they do. Half of the people laughed because it was funny and the other half probably laughed out of discomfort or something. He was such a nerd. This was his dinner entertainment. I wonder if this fly I am playing computer mouse tag with is my dad. Then it starts rubbing its spidery little legs together the way my dad used to when impersonating them and I smile bigger. Because these are strange anecdotes at 4:14 in the morning and I’d prefer to be getting sleep. But then again I would have missed the fly. The fly and all its mystery.
The Fly.
There are a lot of fly stories concerning my deceased father. Like at his funeral when my sister started crying and one landed on her shoulder. Most people would call these things silly, coincidental, random or meaningless. And that for sure is the easier belief. Faith requires energy. But it almost seems like doubt steals it. Sometimes it appears more attractive to trust nothing and be skeptical of it all. But there are incredibly real moments in my life, where explanation just doesn’t work. It’s beyond science. It’s beyond religion. It’s more along the lines of intuition, instinct, and of course, an awakened state of consciousness. It is really amazing what we can see and access when we are awake. But I think we’re mostly sleeping.
In early September I was beginning to really resent my situation. I was physically feeling worse and worse. Everyday activities were becoming harder and I was having to rely on people more than ever. I was beginning to resent the fact that I needed help, which is, insane. I should have been thanking every star in the sky that I had help, but I was too busy being upset that my life didn’t look like what I wanted it to. I was really irritable one day. I was short with everyone. I felt angry, sad, and misunderstood. I needed help but I didn’t want to ask for it, so I resented those who tried. Fed up over something stupid, I took Monty on a walk. We walked up “the hill” that presumably was what put me over the edge after walking up it once a day for a week and then facing a monumental crash. Anyway, at the top of the hill was wide open space for Monty to run and for me to think or yell or curse. On that day I let Monty run while I unloaded some words at the universe. I cursed and yelled because no one could hear me. Except maybe some cars that drove by slowly, and at least they had a story to tell later. (Yeah this girl was flipping off the sky and cursing about fibro-vagina or something?) Pretty soon, this fly landed on my face. I swatted it away and it immediately landed back on my nose. Again I swatted. Again, it returned. I was in such an aggravated state, I wanted to punch the fly in the face. I remember thinking those exact words: I want to punch this fly in the face. When I say the fly would not leave me alone, I mean it. For at least five minutes I let Monty run, let my tears fall, and relentlessly swatted away this fly while also trying to punch it in the face. As if that’s even possible. Fed up, I told Monty that due to a CERTAIN INSECT THAT WILL NOT LEAVE ME ALONE, we had to walk home. Monty looked at me like the psycho that I was, and then we started back down the hill. The fly followed.
I started to cry. All I wanted was peace. I was so upset and felt so alone. My life felt out of my hands and I had become completely reliant on others. I’m always the guest on someone else’s couch. When will I sleep on my own couch? I’m always going to be sick and helpless. These were the thoughts that were circulating. As you can see, they are pretty negative. They weren’t helping me. They were the cyclical mental thoughts that dig you deeper in the hole. The fly continued to dart at my face and I continued to flail my arms in what I think were actual attempts at punching it in the face or more simply, just killing it altogether. But to passers-bye, dear God, I must have looked insane. Finally, near our complex I began to calm down. It finally occurred to me; our little joke about my dad returning to earth as a fly. As I remembered I yelled “Seriously dad this is NOT the time!” So now I was punching the air and talking to a fly which I was beginning to believe was my dead father. Want to be friends?
The truth is, that was the time that I needed to be bombarded. The most effective thing that fly did was make me stop. And examine. And get to the truth of my experience. I had been feeling so alone. But the truth was I had love from all sides. I had family to carry me when I couldn’t do it on my own. It was just time for me to humbly accept that not everything was going to be on my terms, and that’s OK. You can still be happy down another path. Once you stop fighting it. That fly relentlessly flew at my face for at least 10 minutes, while I relentlessly tried to kill it. But by the end it had gotten through. Something told me, something from inside, that fly was a reminder. That life wasn’t over. That I wasn’t alone. That I shouldn’t be so irreverent about living. I was still here. Still breathing. And so I still had purpose.
I approached our front door, now smiling at the events of the last 15 minutes. I had tapped into a different energy. A better energy. All thanks to that really, persistent, annoying fly. Whoever he may be.
A few of my close friends have taken the plunge off of Facebook. I’d like to show those friends what they’ve been missing. You’re welcome!
At first I was like Woah, too much information. But then I was like what, no pictures?Thank God!!!!!!!Yeah!! Wait, I never signed anything.Thank God for hard hitting local news.Let’s talk about the definition of ‘literally’…Totally agree.Like this status or the kitten gets it!!!!Thanks!!!Kids, don’t eat the peeps.He’ll appreciate this when he’s 20.I don’t trust this, bro.Totally. Wait what?Talking about milk is fun!!!Something happened to my friend Noah.This sounds serious.Health and Happiness.
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.
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 came across these words in the middle of the night last week when I was really sick and couldn’t sleep. I was feeling scared and anxious–of what I wasn’t exactly sure, but there was some sort of doom over my head and I didn’t know how to relieve it. This passage helped. Today my mom read to me the same excerpt out loud while discussing life and love and hardship. I figure twice in seven days is enough of a sign for me to pay attention to the words, so I thought I would share them here as well. They are written by the mystic Joseph Cambpell.
The loss of a love and the pain of a broken relationship is an overload of projection. That’s all it is. In youth, your whole life is this wonderful dream that “This is It”: this relationship is the fulfillment of my fantasy and I can’t imagine life otherwise. No argument can quell this feeling of total projection, of everything in the other one. I guess we can all recall an episode of an adolescent relationship that seemed to be the all-in-all and then went to pieces for some reason.
When a relationship breaks off, it takes a person a little while to settle and find a new commitment. It’s after the breakoff, when there is no new commitment and life has been divested of all of its potentials, that this painful reaction takes place. For some people this is a dangerous period.
The psyche knows how to heal, but it hurts. Sometimes the healing hurts more than the initial injury, but if you can survive it, you’ll be stronger, because you’ve found a larger base. Every commitment is a narrowing and when that commitment fails, you have to get back to a larger base and have the strength to hold to it.
Nietzsche was the one who did the job for me. At a certain moment in his life, the idea came to him of what he called “the love of your fate.” Whatever your fate is, whatever the hell happens you say, “This is what I need.” It may look like a wreck, but go at it as though it were an opportunity, a challenge. If you bring love to that moment – not discouragement – you will find the strength is there. Any disaster you can survive is an improvement in your character, your stature, and your life. What a privilege! This is when the spontaneity of your own nature will have a chance to flow.
Then, when looking back at your life, you will see that the moments which seemed to be great failures followed by wreckage were the incidents that shaped the life you have now. You’ll see that this is really true. Nothing that can happen to you is not positive. Even though it looks and feels at the moment like a negative crisis, it is not. The crisis throws you back, and when you are required to exhibit strength, it comes.
The dark night of the soul
comes just before revelation.
When everything is lost,
and all seems darkness,
then comes the new life
and all that is needed.
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.
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!
Sound the bells. I survived the Colorado Crash of 2012. I’m alive. Woohoo!
Yesterday I finally started feeling back to my normal sickley self, not my deadly sickley self. And it feels good to be able to be out of bed for more than an hour a day. That tends to wear on a girl…at least a little. I can’t believe what a disaster my Colorado vacation was. It’s funny I’m still referring to it as a vacation. That’s like taking someone to the DMV and calling it a date. It was really hard for me to enjoy my time there because I was in constant recovery, catch up, and crash mode and the cycle didn’t break the whole time I was there. I had to say no to things and miss out on things which I’m typically “OK” with but this time I felt real sadness and anger about it. I wanted to blame someone, I wanted a reason, I wanted to “talk to the manager” about this. I wanted it to be somebody’s fault and somebody to fix it. But, that’s not how it works. These are the things that teach us grace and surrender and sometimes getting the lesson is the most painful part. By the last night I had broken down in tears just exhausted from being exhausted and feeling like the Debbie of all Downers. This illness tends to turn its victims into high maintenance fun suckers when it’s at its worst, and nobody likes to be around that. By the end I was tired of who I was on that trip and what I required. But my brothers talked me through it and we decided that next vacation we take, we aren’t making an itinerary. We’re not overcommitting to engagements and we’ll try to just take each day as it comes. We’re going to try to effectively do nothing–something I’m pretty spectacular at and most people are still getting the hang of. I’m happy to teach my ways. I’m doing nothing right now!
As hard as the last two weeks have been, I feel like it is all starting to pay off because now I find myself in Paradise. My sisters in-laws left yesterday morning for a three-week trip to Africa. When they told me about their voyage months ago my first question was what they were going to do with Mikey–an enormous yellow lab and king of the household. When they threw around options I casually mentioned that Hey, I have nothing to do in August (or any month ever for that matter) and I could watch Mikey for them if they preferred he had a dogsitter. A few days later they took me up on the offer and even allowed me to bring Monty here too. So now, after all the exhaustion, noise, chaos, itineraries, plans and breaking of plans, I find myself in a beautiful California home with two loveable drooling teddy bears, and I could not feel more at peace having arrived. When I wake up in the morning, there is silence, and there is no itinerary to follow. DO YOU KNOW HOW GREAT THAT IS!?!?
Truthfully I have always treasured my solitude. If I were a Country Singer, I would write a song called “Solitude Has Always Been a Friend of Mine.” Anyway, it happens at least a few times a year that I require almost total isolation and dream of being locked up in a cabin somewhere and cut off for a little while. It’s like my souls version of food cravings. I have always enjoyed small endeavors on my own. Sometimes I like to eat at restaurants alone, or see movies or go to the bookstore. I love not having to keep up a conversation and going at my own pace, which is usually pretty slow. There isn’t anything so commonplace and exhausting to me as small talk. I have no patience or energy for idle conversations anymore. I don’t like having the “What’s new with you?” conversation. I don’t like to hear how your job is going or how your brothers band got a new drummer. And I don’t like to share news from my neck of the woods either–obviously because I don’t have any. “Yep, still sleeping on peoples couches. Well bye!” I realize this probably makes me sound like an old curmudgeon, and maybe I’m starting down that path at the ripe old age of 27, but there is something about those forced conversations that sometimes even the mere thought of them drains me. They just feel so inauthentic on both ends and since my time out of bed is so precious anyway, it’s hard for me to spend it on a conversation that we’re having to fulfill some duty–or because we feel like we should. This is why having a dog as a best friend works out great for me. No elevator talk.
I don’t care about your job.Me either!
The other part is, while writing is my passion, it’s kind of a lonely practice. You can’t do it well with people around. And you kind of have to “strike while the iron is hot” which is typically for me sometime around 3 in the morning. The act of writing is not nearly as satisfactory as the result, and many times the process is grueling. Anyway, the only living thing that can hang out but not disturb me is a dog. Two dogs even. So Monty and Mikey have been great companions. We eat, sleep, swim and write and there’s no itineraries or talking about our jobs. Wanda left me a note welcoming me to help myself to any and everything and to write a book while I’m here. Think I’ll take her advice.
I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.
Not Too Shabby a View
I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.
Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!
The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)
On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone itso many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.
Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.
In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.
After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.
There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.
The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help?
And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.
There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:
No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “
So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and justbe exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.
I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.
FibroM.E.-Awesome 