Dog Spelled Backwards

 

Help. I’ve fallen. And I can’t get up.

I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.

 

Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.

It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.

I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.

 

Thanks for the clothes Grandpa!

Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.

 

When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.

Health and Happiness and Keep On Keepin On.

 

The Day I Tried to Punch a Fly in the Face.

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.

Health, Happiness, The Fly.

Good News.

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 be talking about, here is the backdrop to my very high tech news desk.

Watch the good news at goodnewsinplaid.wordpress.com.

**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.

Health, Happiness, Plaid.

A Shit Show.

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

 

Health, Happiness, Shit Shows.

 

 

A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

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) and Hay 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.

Health, Happiness, Change.

One Thing, Once a Day.

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.

Health, Happiness, One Thing a Day.

Dude. Solitude.

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.

Health, Happiness, Solitude.