Back To New Orleans.

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

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

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

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

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

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

Health, Happiness, Home.

Nothing beats a New Orleans Wedding.
New Orleans Wedding.
Nola Windows. They're the best.
Nola Windows. They’re the best.
photo-68
Life In Color.
Eating crawfish. Once you know, you know.
Eating crawfish. Once you know, you know.

Girl Without Pills

I ran out of pain pills last night. I took my last one at 2 am, with fingers crossed and divine pleadings for what lied ahead. I knew full well that if something were to go wrong tomorrow between the doctor or the pharmacist or something logistically silly that I have no control over, then it was going to be a very bad day. All it takes is a pharmacist who decides that it’s too early for your prescription to be filled, or decides they need the prescription in writing or says that only if it rains tomorrow will you be able to get your pills. Every time I pick up the phone to talk to a pharmacist, check on a prescription, call something in…my heart pounds. It’s a true battle. Seriously. If I didn’t get the pills by tomorrow I’d be positively out. Dry. And I’m years beyond the point of something like tylenol or advil being any kind of effective. The sad truth is that if a 200 pound man took the pill cocktail that I do everyday, he’d have a hard time functioning. If it sounds like I’m bragging I’m not. It’s just the truth. I’ve been trying to get my pills since last Friday. If I don’t get them tomorrow, on top of the pain there would be  bad withdrawal effects. Icing on the cake.

Bright and early this morning I called the doctors office to make sure they received the authorization form. They informed me that they received it and authorized it on Friday. Last Friday. Bad news. That means a pharmacist decided not to fill it for whatever reason. And now the state of my well being, my comfort, my ability to function and sleep, is resting on the shoulders of someone I don’t know at all, and whatever he or she decides is the appropriate day to give a sick girl her pills. But I am just one of many. I’m sure they’ve heard a lot of stories. A lot of abusers. Addicts. Maybe to the pharmacists we’re all addicts until proven sick. “Your pain medicine will be available to pick up tomorrow.” I can tell by the stern urgency in her voice, there is no talking her into giving them to me a day early. A day earlier than the arbitrary Thursday that someone decided was the absolute appropriate day for Mary to get her pills. I tell her thank you. I talk to her like she’s a cop. Make her feel powerful and thank her graciously. I hang up the phone and know that the next 24 hours are going to be tough. I’m not going to sleep tonight. It’s 10 am. The pharmacy opens at 8 tomorrow. 22 hours to go.

Oh you want these pills? TOO BAD!!!
Oh you want these pills? TOO BAD!!!

I often try to calculate how many hours I’ve spent in line at Walgreens. On the phone with Walgreens. On hold for my doctor. On the phone with insurance. (Back in the day when I had insurance.) Acting as a mediator between two institutions which seem to often…miss one another. It’s probably better I don’t know. I don’t count the thousands of dollars out of my moms savings that go towards prescriptions. Inevitably the numbers would be high and sad and dissapointing. What I really need to do is be thankful that for now, there are pills out there to help me and for now, we have the money to buy them. Except today. Today was different.

Today was an insane reminder of what my body feels like in its natural state- which is fucking terrible. I’m sorry about the F word, but I really desired emphasis there. It’s been awful. Of course part of the feeling is withdrawal..but mostly it was just that widespread pain and awful, burning, firey legs. Under my fingernails hurt. My gums and teeth hurt. My body felt like a high voltage electric fence–exuding pain frequencies. It was pretty terrible. At the same time there was light at the end of the tunnel; I knew that by tomorrow I’d get relief. So it was only a day and I looked in the mirror and said for God’s sake Mary, I can go a day without! 24 little hours. And of course I could..it wasn’t going to kill me.Mostly it was a huge reminder of what life without pain medicine would be like, and it was really, really terrible. I know I sound like an addict- but I don’t get high off of my pain medicine. I take one at a time, and I don’t feel euphoric after. I just feel relief. But to outsiders I know what it looks like. And I can understand.

I fully prepared myself for another night up by myself, counting down the hours until I’d get my hands on something to take away the pain. A bath provides about 20 minutes of relief. But once you step out, it’s over. It all comes back. I wish I knew what was going on in my body. It’s like it’s being held hostage by an invisible monster. I realize that pain is not the natural state of the body. It wasn’t built to exist this way. I constantly think of a line in Mark Nepo’s book where he says “Pain is just a sign that something needs to change.” I wonder what needs changing in my life. I try to pay attention. I try to find the meaning in all of it. I do a lot of examining. I know examination is one of the benefits of my situation. It’s hard to truly examine life with all of our distractions and obligations- it’s hard to unplug from our devices. There is rarely quiet in the world. It’s up to us to find it.

I must have a pain killer guardian angel, because when my brother-in-law came home from work close to midnight I told him about my all-nighter plan and the insane state of my body. He happily informed me he had some leftover pain medicine from his knee surgery in his truck. HALLELUJAH!  The pain was going to go away now. I was going to get some sleep afterall. He saved me.

Sadly I know that it won’t be long before I run into this problem again. This logistical, bureaucratic, prescription nightmare is basically constant and I know that all you chronic sickleys out there have to deal with it too. And it’s not the pharmacists fault. It’s not the doctors fault. It’s partially a broken system, it’s partially the fact that drug addicts have tightened the reigns so much on oversight of certain drugs that it’s become hell for people who actually are just trying to feel better.  Last week it took countless phone calls and ten days to get my anti-biotics filled. Ten. I could bore you with the details but I won’t because we all deserve better!

It’s 2:30 am but I’m awake because 1. This is my quiet time. 2. It’s really nice to be alive and not feel the pain that I’ve been feeling all day. 3. When your soul wants to write, your soul wants to write. I have to be honest; all of this scares the shit out of me. I don’t want to have to take pills the rest of my life. I don’t like that I am dependent on medicine to be functional. But the hard truth is that the alternative is just not doable, or worth it to me. I couldn’t endure that type of pain everyday and be a solid human being. I think, eventually, it would just break me. It scares me because while I feel like I’m getting old, in the grand scheme of things I am only 28. I want to get married one day. I want to have kids. I don’t want my liver to explode. But there’s not really a way those things are possible for me right now and I trust that I am where I’m supposed to be. I really do. Being on my own has been immensely educational. In a way it’s made me stronger. Smarter. More self reliant. You sort of learn how to make yourself happy, and there is real value in that. I heard somewhere that 40 is the new 30, so maybe I don’t need to worry about these things just yet. I know the focus needs to be on getting well. It also needs to be on acceptance and finding my heart of joy, and writing, even when things are grey. I want to feel completely whole before I bring in anyone else to my life, and there are still a few pieces I’m looking for.

Anyway, now that the pain has subsided, I should try to find my way into the world of sleep. I day dream all the time about a life without sickness, without pills, without entitled pharmacists dictating a life. But the truth is, even in my dreams at night, I am looking for pills. Taking pills. Spilling pills. Pleading with pharmacists. When I wake up, its because of  pain. I take a pill of almost every color, and then I sit and wait. Every day the same. The life of a sick kid.

It’s better than it sounds.

Party On Wayne!!!

Health, Happiness, Pills

That New House Smell.

I’m sitting upstairs in my new bedroom in our new house. After eight months in an apartment complex I called the “California Projects” for many reasons, most recently a murder in the apartment above us, it feels good to be in a house. A real house. There’s a yard and a small playground. My room has a bay window; something I fantasized about having as a child, and now at 28, my window dreams came true. There are men downstairs installing the floors and speaking in Spanish. In typical white girl fashion, I say Hola! and ¿Cómo estás? and that is all I know so that is the end of the conversation. They are nice. I wish I could creep on their conversations, but I chose French in college which, outside of my semester in France, I never ever speak. Except for my dreams and a French dude I sat next to on the plane last time I flew.

The people who lived here before us hadn’t paid their house note in two years. They are one of thousands among Southern California and America whose eyes were bigger than their wallets. Their inability to pay made for a steal on the house but an insane amount of paperwork and complicated buying contingencies. After a lot of back and forthing, Amelie and Keegan got the house, and then tore out all the ugly stuff. Right now we don’t really have a downstairs with floors, or a kitchen or a living room. So I hang out in the yard with Monty and notice that when the old tenants kids were younger they carved their names into the cement on the side of the house. I feel a little bad. I’m sure when they moved in however long ago they figured this would be their house for life. But I guess it’s a lesson thousands of Americans learned these past few years. It makes me afraid of money. Which is fine because I don’t have any.

I mark this move as a symbol of better things to come. The last apartment was both literally and figuratively dark. There was definitely not enough windows and the light that shown  in my bedroom came from fluorescent bulbs that burned in the corridor outside my room. Yellow and artificial. I spent my sickest days ever there. On the couch or in my bed. And those steep stairs you had to walk down to get to our place–my God I hated those stairs. Each one I cursed when I walked them and my legs were shaking with weakness. Screw you screw you screw you screw you screw you. All the way to the bottom. Or the top. Didn’t matter, I hated those stairs, and Sunday was the last day I had to walk them. I flipped them off from the car as I drove away from that apartment. In my mind that song “Movin’ On Up” played in my head and I hoped that this literal upgrade would also be the symbolic mark of how all of our lives turned around. How once we moved, everyone got everything they ever wanted. But even I know that’s not how it looks. Still, a girl can dream. Only good things here. Leave all the crappy stuff at the bottom of the stairs or in my old closet with the broken door.

Now we’re in real Suburbia. A three car garage and neighbors that say “Welcome to the Neighborhood!” You can hear kids playing outside and there are minivans and such. It’s a nice street in a nice neighborhood and you don’t have to go down any stairs to get in. Now when my large and loud family visits, there will be room for us- presuming we don’t all spit out a baby in the next nine months. But hey, you never know. Although last time I checked you have to have sex in order to have a kid, so, you know, I’M GOOD THERE. Monty is my one and only, and he’s happy to sleep on the floor. Here’s some pictures from the heart of the burbs. Enjoy.

Health, Happiness, Suburbia

Monty enjoying the new view.
Monty enjoying the new view.
Someone loves Taylor.
Someone loves Taylor.
Tiny furniture left behind in our sand box.
Tiny furniture left behind in our sand box.
A neighbors astroturf af lawn.
A neighbors astroturf lawn.

Believe in Miracles? Believe This.

Good News! I woke up yesterday totally healed. I have loads of energy and no pain at all. I threw out all my pills and I’ve signed up for a marathon and begin full-time work next week! Haha. Just kidding. But that would be cool wouldn’t it? I’d write my final blog post: “Well, I’m all better now. Peace suckers!!!!”

Last week I put out a call to the master of the Universe with a very modern hope that he reads blogs, and specifically mine. Well it appears, he does. Or he did. After a really tough couple of weeks with bone crushing fatigue and other relentless symptoms, I woke up on Monday…lighter. My weakness seemed to have lifted overnight and I felt energy that I hadn’t felt in a long time. It was bizarre. I didn’t think too hard about it fearing if I did it would somehow leave. On good days you just count your blessings and then you get a few things done that have gone undone and overdue while you were busy sleeping, living under a rock. Or covers. You get it.

I was surprised and deeply moved when I looked at the blog on Monday to see so many people had rallied in my corner, sending positive thoughts and prayers. Many of them perfect strangers. My mom had also written an email to family and friends asking for some divine help, as nothing on “this side” was really working. I was again taken back when I signed onto Facebook to see people gathering troops in prayer groups and the like to pray for me…a sick girl who asked for a little relief. My cousin Cindy asked her “prayer warriors” to come together and see if they couldn’t “lighten her load.” On Monday that is exactly what it felt like physically; like my load had been lightened. That heaviness I had been carrying around, gone. Once again, perfect strangers wrote to say they had been praying for me, many of them offering beautiful and supportive encouragement, assuring me I would get through this. People emailed my mom back all with truly inspiring and beautiful things to say, some as succinct as “Hang on, you’ll get through it.”  As I read I cried, overcome by gratitude. But more importantly I believed what people said. I was assured I’d see the other side. With each message I felt a swelling warmth in my chest. Suddenly it struck me that the miracle was not that I woke up basically symptom free on Monday. It was how quickly humanity had come together-friends, family and strangers–with powerful intentions, love, support, and healing thoughts for a girl who some had never even met. It reminded me that we are in this together. We are not each one life, but an interconnected string of lives, and that when we assemble for good cause we are capable of incredible things. When one of us is pain, we all feel it somehow. When one of us overcomes, we all win. And maybe most importantly, when one of us strengthens and expands her consciousness, all the worlds consciousness is raised. We all evolve.

I laugh because in my blog I asked God for one day. Just one day of relief. Well, I was given two. By Tuesday night I felt the heaviness start to come back. My  muscles weakened and my familiar sick disposition descended on me. I know that on the outside it seems unfair. Why give her two days? Why not give her the rest of her life? And if God were a genie and life were a two-hour movie, that’s probably how it would work. But we are living in the midst of eternity here–our lifetimes in that context are a flash, but each one brings an invaluable meaning to the whole. The lessons we learn often take a whole lifetime to get perfect, but each contributes a small piece to the universal puzzle. Anyway, in my blog I sadly theorized that maybe I was forgotten about. My symtom-free two days reminded me ever so gently that no, I was not forgotten. This is just the work I have to do right now. A lot of it from bed. Seemingly on the outskirts of the high-paced world, the 9-5 jobs, security or fortune or fame. But just because you live a lot of your life in solitude does not mean you’re alone. Just because you don’t wear fancy dresses and attend important events doesn’t make your life’s work or contribution any less important. We all have very individual paths and under closer examination the design reveals itself as perfect. When I consider that my passion is and has always been writing, something that was absolutely untouched by the illness except that it gave me my platform to begin, there’s no question that there is a higher intelligence who’s job isn’t easy either. I doubt the creator likes to see his masterpieces suffer, but that’s the difference between us and him; he can see the finish line and we can’t.

To keep living takes a massive amount of trust on our part, especially in the midst of pain and hardship. But it’s that solid trust inside me that tells me to keep going. That’s what the voice is grounded in; trust in the grand design. That this is the work I have to do right now in order to become whole, to evolve, and to find inner peace. I often fantasize about a life that I don’t have. One where I wear pretty dresses and attend charity dinners and I charm people with gracefully told jokes and stories. “Tell us another one Mary! You’re the greatest story-teller ever!” they all yell.

That Mary Is One Hell of a Story Teller!!
That Mary Is One Hell of a Story Teller!!

Haha. I have no idea why that’s what I fantasize about, but it is. And maybe one day I will dress up and I will do those things at a party–but for now I need to be where I am and remember it won’t always be this way. Remind myself that I still have access to life’s greatest treasures whether I’m in my grandpa’s pajamas or in a dress at a fancy party: Love, passion, friendship, community, creativity and hope–they’re all still there. I am still young relatively and I’m still figuring it all out. I don’t know exactly what I believe in, I just know that after last week, I believe.

And I hope you do too, because you were very much a part of it.

Health, Happiness, Miracles.

An Animated Version of My Sick Week.

I’ve finally reemerged out of my latest crash. I’m kind of tired of dedicating words to what being sick is like, so instead I’ll do it with GIF animations. Here’s how it went.

Monday: I tried to get out of bed, but it went something like this.

By Tuesday I was still lifeless and sick, so my mom brought  food to me in bed, which went something like this:

By Wednesday I’m  like this is crap! I’m going outside to play! Which went like this:

So back to bed I went, like this

Then I woke up like 20 hours later like this:

And then someone with enthusiasm calls and says “Hows it going Mary?!?!” and I respond “Great!!!”

Then after a long day of exhaustion, I try to go to sleep, which goes something like this:

Then alas I get to bed, and when I wake up, my body feels like it’s done this to itself all night…

Being awake feels crappy so I go back  to bed, like BYE WORLD!!!

Then I wake up to Bill O’Reilly playing from the living room…

Meanwhile Monty is bored to death with his owner so he decides to go out in the world on his own…

Then finally I wake up with enough energy to get out of bed and be a functional human being!

Which means it’s a PLAY DAY FOR MONTY!!

Woohoo!!

Health, Happiness, Sick Weeks.

White Girls on Facebook: Part 2.

1. Write the name of an alcoholic beverage and a question mark followed by “Don’t Mind If I Do!”

Ahhh much needed.
Ahhh much needed.

2. Talk about how INSANELY busy they are and the massive amount of things they have to do! So much so they spend the next two hours on Facebook talking about it!!

3. Use “LOL” questionably and in an overabundance. “I have cancer lol” “Me too lol”

4. Some version of this picture, allll up in your biz.

My legs enjoying the beach.
The bottom half of my body enjoying the beach.

4. Talk about preparation for tomorrows workout, take a picture of today’s workout, or reflect on the burn from yesterdays workout.

5. Delve into the recent cold they caught, list all the corresponding symptoms of said cold, then tag a photo of Dayquil and Hot Tea. Potential Caption: Yucky sniffles AND a sore throat! :(

6. Take a picture of herself scandalously dressed and tag it with this caption: “Hey you.”

And by you I mean me.
And by you I mean me.

7. “Today I am thankful for gratitude lists.”

8. Attempt a really inspiring, self-written life quote. “Never take advantage of anyone. Life is short but regret is forever. Always thank your lucky stars and never forget to dance. Even in hard times, the sun will shine through the night.”

9. Talk some major smack about football and/or their fantasy team. Then talk some major smack about The Bachelor.

10. Take a picture of basically anything and caption with: LOVE. <3 <3 <3

LOVE.

12. Girls Night Out!! Prepare for pictures, captions and a play-by-play before the night is halfway over.

11. Something borderline horribly offensive followed by “Just Sayin.”

13. Picture of the hubs taking a nap with the baby!

LOVE.
LOVE.

14. Vent a frustration beginning with WOW. “Wow, I was under the impression that a STOP SIGN MEANS STOP.”

15. Duckface. Forever and Ever and Always.

Yall come to the party I'm having by myself in the bathroom!
Yall come to the party I’m having by myself in the bathroom!

Health. Happiness. Facebook. GIRLS.  <3

Snow, Christmas, Crash, Repeat.

I’ve attempted to sit down and write multiple times this week but my eyes continue to grow heavy and I fall asleep with the light of the monitor on my face and an incomplete sentence waiting. Most of the family left to their respective homes on Sunday and it appears my body waited for them to leave to go ahead and crash–which is nice of it actually. I made it through Christmas Eve and Day with adequate enough energy and I was really grateful for that. If being sick now is payment for what I experienced with family this Christmas, then it was well worth it. I just love those crazy animals!

Christmas is by far my favorite Holiday. The lights, the soundtrack, a reason to be kind, the eggnog, the food and the family. I treasure it all. Since we spent this Christmas in Colorado, I began praying weeks in advance for a White Christmas; something I haven’t had in many years. It just makes everything that much more “Christmasy.” When I awoke on Christmas Eve, I saw that my prayers were heard. We had every type of snow that day. In the morning it came down softly. By the afternoon it was big, slow flakes. On the way to Mass it was small gusty snow, fast and twirling. I felt like a kid again. And being that we’re Southerners who are rusty in the art of driving in snow, we went about 15 miles per hour on the way to Church, leaving an impromptu parade of backed up traffic behind us. But you can’t get mad about traffic on Christmas Eve– Not in your Sunday Best while the sky is falling. I received more than I asked for; 6 inches to be exact, which is pretty substantial for this town. It continued to snow into the night, revealing a very real White Christmas the next morning.  My favorite part was taking Monty on a walk that evening. The night sky orange from the clouds reflecting lights, the atmosphere hollowed; a padded cave where your steps crunching the snow is all you really hear. It almost demands that you stand still, that you look up. There is a tangible quietness to snow and it was a real gift to experience it again.

Monty in the Snow, Night.
Monty in the Snow, Night.
Yum.
Yum.

I also really like this time of year because there’s such a sense of hope and possibility with the New Year. On a technical basis, it’s minor. It’s just a change in numbers. A 2 becomes a 3. But for human beings, where space and time matter, it marks an end and a beginning. As the numerical date changes, it’s wise to reflect on the past 365 days and think of what you want the next 365 to look like. Of course, as the mystics would remind us, there is no past or future. A New Years Resolution can only begin and mean something right now. Right now is all there is.

I didn’t make a New Years Resolution specifically, though I love the idea. I reflected on New Years Eve 2010, which I spent at my parents house, and it was Monty who I kissed at midnight. The next few days would involve a heavy crash and a hospital visit and some major contemplation about what to do with my life that I was slowly losing control of to health. I remember that last New Years Eve I thought well, at least the worst year of my life is over. I thought 2011 would be my sickest year, and that I could stuff it far away somewhere. Bury it. Burn it. Just put it out of sight and move on. And then I met 2012. In many ways 2012 ended up being my toughest year. Health-wise it was one of the worst. Emotionally it drained me. Personally it humbled me. You’d think after years of being sick I’d have it all figured it out by now. But I’m still learning. Feeling my way through the dark parts to find meaning, treasuring the good days, and holding out hope that this won’t be my life forever. 2012 was deeply hard, but another way to look at it is this: I survived. I made it. It’s over, but I’m still here. Like Caroline Myss says, “As long as you’re still here, you’ve got purpose.” I may be sickley and often seemingly useless, but I am still here, and I do feel underneath my lifeless body that I still have a lot of work to do. And if most of it comes from bed, so be it.

There’s a few other lessons I’ve learned in 2012 that I’ll take with me into 2013 on my way. Wherever that is.

I’ve learned how to be a house guest: That most people consider themselves clean and organized, and that every person’s definition of those two traits are absolutely different. All in all, people appreciate when you make your bed, so do it whether your hosts do or not.

I’ve learned that old ladies don’t like dogs without leashes.

I’ve learned that violence is not the answer and instead of trying to punch a fly in the face you may benefit from pausing and reflecting instead.

I’ve learned that even if my body is worthless, my mind is not, and it’s still possible to achieve things from a couch, or a bed…in pajamas.

I’ve learned that even if they’re the right thing, breakups hurt. They’re hard. Sometimes it really is time that heals those wounds best.

I’ve learned that every person is fighting a battle. I used to never talk about my issues, or even write in the first person for that matter. Now I have a public blog with everything out on the table and a lot of I, I, I. But most people do not. They keep problems and pain inside, protecting a sore spot somewhere, which is important to remember when they’re flipping you off in traffic or cursing your name from across the street. We all have issues, and it’s all OK. In my darkest times I’ve found reassurance that no one is alone in their pain.

I’ve learned that the best doctor is Dr. Mom.

I’ve begun to learn to swallow my pride. To accept help with grace. To admit when I can’t do it on my own. And that there is much more freedom than pain in those moments. There is real ease in surrender.

I’ve learned that regardless of the question, the answer is protein.

And that out of all 25 pills, nothing makes me feel better than laughter. Mine and others. For real.

I’ll take all of these with me. Into the future, to a galaxy far far away. Or to whatever state I end up in next. I don’t know what 2013 has in store for me. So far, I’ve basically spent it in bed. But that’s OK too. Because regardless of what 2013 brings to the table, I promise to keep on laughing, to keep on joking, and to keep making fun of the tragedy that can be life. In almost every punch life throws, we can laugh or we can cry, and in my experience, it’s just way more fun to laugh at it all. In short, I’ll keep taking 25 pills and making lemonade…or something like that. Happy 2013 yall.

Health, Happiness, 2013

Life at the Window.

I spent last Spring in a playground called New York City. My brother and sister-in-law had this great apartment in TriBeCa with huge windows and a doorman. As newly jobless, apartment-less, boyfriend-less- New York City felt like the perfect place to spend some time and  get to know myself again. I had lost all of my “identifiers ” and it was time to get in touch and adapt.  It was truly a treat  staying there while I reconfigured what my life was going to look like. My brother spent most the week in Boston teaching at MIT and Estee worked full-time, so I had this great little cube in the city to myself a lot.

Our cube with the light on.
Our cube with the light on.

My only responsibility as a guest there was to walk the dog, Lilly. Lilly was cool. Sweet and low maintenance, she was happy to spend day after day sitting on top of the heater with me and looking out the window to life below. I wrote, read, and occasionally played music super loud and danced alone in the living room. (One day I danced “the Dougie” too hard and exhausted myself for a week) If anyone were watching from the building across the street, it would have been quite a show. Lilly sometimes barked at a dog below or a UPS man unloading boxes, but mostly we just watched. It was a perfect, small existence for me at that window. New York City had a way of making me feel intricately connected to the pulse of life, even though I was sick and on the outskirts, and my only participation was mostly observation from the 4th floor. I never felt isolated in New York. Sometimes I ended the day feeling like I had interacted with so many people and in fact I hadn’t actually talked to anyone. There’s something so involved there, that even as a spectator I felt implicitly a part. I would watch the people walking their dogs or babies in strollers, laughing or yelling on their cell phones, entering restaurants and hugging friends hello, and it all made me feel incredibly human again. I could watch life from that window all day and never get tired of the sights. And most days, that’s all I did.

Life at the window.
Life at the window.

I really had to get used to the “free time.” I know that sounds like an illegitimate complaint, but going from working to not was hard to navigate. To strangers it sounds fun..”You’re so lucky! You don’t have to work.!”  But that’s kind of like telling someone in a wheelchair “You’re so lucky, you don’t have to walk!” Truthfully it can be extremely lonely and isolating having absolutely nothing but time on your hands, but possessing none of the means in which to do the things you used to. It took me a long time to adjust to not having a typical day schedule to follow. Such is life. We notice things more once they go missing.

It was surprising how responsible I had to be with my free time. You can’t just do nothing. Nothing is the gift you give yourself after you’ve done something. But if you’re not actually doing anything, the nothing part becomes completely sad. You have to be responsible. It occurs to me now how much security and diligence there was in my fulltime job. A schedule is basically simple. Follow the rules 5 days a week, get paid, go home. There are things you say in an office and things you don’t say. Wear and don’t wear. I worked at that gallery because that was the progressive step after college. It was safe there. I knew exactly what was expected of me and I was good at what I did. And on the 1st and 15th of every month I was paid 1,060 dollars for following the rules and doing my work dutifully. There was a time work began and ended. And there were two entire days a week you had to yourself. It didn’t matter what you did on those days. It only mattered that you showed up on the right days and were on time if not early.  Then all that was left was following the rules. Performing tasks. I do miss the stability of that old life. The one where at least I felt  like I knew what I was doing and where I was headed and what was coming my way. Now there is none of that routine or structure. There isn’t really anything expected of me now.  No tasks to check off, no paycheck twice a month. There’s no real order, and it’s a strange thing to very quickly lose something like that. There is ease in order.

As easy as it is to complain about work, to dislike your boss or co-workers, there is something very essential in human beings that gets fulfilled in just getting dressed and going to work every day; contributing  to the “whole” some way and getting paid to do it. Even if the work is  mundane or repetitive. Even if your co-workers are punks or your boss is a turd-sandwich, there’s something gratifying about good old fashioned compensated  labor. Life becomes pretty different without it.

Part of my biggest adjustment in getting sick has been surrendering to a schedule that I can’t control. I don’t know how I’ll feel one day to the next, what I’ll be capable of. I don’t know if Ill sleep at night for 12 hours or 10 minutes. (Or if I’ll be up at 2 am writing this blog like I am now)  So in a very bizarre way, the illness has literally forced me to live one day at a time. One moment at a time. What am I capable of right now? OK, I’ll do that. It has become that specific.  And I think after nearly two years of no “real” job and crashing my siblings couches, I am finally understanding and accepting life without schedule, rules, tasks, and order. Or what I was perceiving to be order. The funny thing is  now I see that even in my highly organized, scheduled life, I still wasn’t in total control. It only felt that way. It looked that way. I still got sick. Life still “got to me.” My life is no more or less in control now than two years ago. It is truly, just perspective.

My brother Nick encouraged me to read while I had so much downtime, and that was good advice.  Here I was writing all the time, but never reading what was done before me. And you need context in everything, especially literature. I still have a ton of reading to do, but I’m really glad I discovered the real joy of it. Growing up it always felt like labor– a requirement that didn’t interest me. Now I find real freedom in it. There is nothing like getting lost in a story. I admit it’s more fun to read than to write. There is anxiety in me sitting down to write. But there is total surrender in sitting down and investing in a story.

Anyway now that I didn’t have a schedule to adhere to or  specific tasks to perform every day,  I was now up to my own devices. I realize that sounds like a really spicy thing to say. But mostly it was  me in and out of dreamworld on the couch or sitting on the heater, looking out that window, and drinking coffee with Lilly.  Every once in a while we mixed it up. Like when I dressed her up in my hat.

Lilly wearing my hat with attached scarf.
Lilly wearing my hat with attached scarf.

Or put her in my laundry basket.

Say cheese!
Why are you doing this.

Or if it was a healthy day we’d walk to the piers and watch the joggers and boats.

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Contemplation.

As nice as our walks were, I think I was most content at that window. In general, I am happiest by windows. I gravitate in every house to the room with the most light. I like to see outside. Hopefully one day, I won’t be the girl at the window, but the participant outside. The subject of someone else’s observation. But truly, I ‘ve become happy with this spectator form of my life. I don’t think it will always be this way, but it has granted me a unique perspective. It has made me step back and examine. It’s given me stillness in a very fast world. Even sick in bed, I can still examine life, ask my questions, read and write for the answers. None of this could happen in my old busy life. There was simply no time for it. There was work during the week, and sick recovery on the weekends. Now I have a new kind of work. It doesn’t pay well (as in, it doesn’t pay) but my boss is cool (that’s me) and every day is “Bring Your Dog to Work” day. Maybe the best part is, I am never too far from a window. For me, for now, that is enough.

“Participate with joy in the sorrows of the world.” -J Campbell

Health, Happiness, Windows

My friend Gabe took this picture of me at the NY window at night. Thanks Gabe!

Night.
Night.

We Are the Leaves

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

Health, Happiness, Trees

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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.

Meanwhile, on Facebook…

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.

A Call For Positivity.

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.

Health, Happiness, Hanging On.

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.

 

 

What Type of Facebooker Are You?

1.The Advice Seeker of things that seem relatively obvious. Does anyone know where I can find groceries? I’m looking for things like broccoli, milk, poultry, cereal and juice. Looking for good prices but also quality food. Any suggestions?

Message me with any info. Thanks!

2. The incredibly angry but mostly uninformed Political Posting Tyrant. Taxes are such bullshit!! Why can’t everything just be free? I wish the morons running this country would ask themselves that. Now I’m going to quote the constitution for you. 

3. The Horrifically Offensive Facebooker that doesn’t seem to know it. Is it just me or are pregnant people gross and disgusting? 

4. The ball-busting Debbie Downer. (AKA, the person that ends every status with UGH!!!!)  Wow, after being stuck in traffic for 2 hours, I come home and step in dog shit. No, I don’t have a dog, my neighbors do. So I wrote them a letter explaining that I’d really appreciate it if they picked up after their dog, that is part of YOUR responsibility as a dog owner, not MINE as your neighbor. UGH!!!!!

5. The Emo Kid Facebooker, dense with cryptic statuses. Yes, I can forgive you, but that doesn’t mean I’ll forget. 

6.  The Check In Everywhere You Go Facebooker. Mary was at Albertson’s with Who Gives a Shit

7. The Stay on Facebook MomYep, Tommy just shit in the toilet all on his own. Then he asked me to wipe his butt for him. I have never had so much fun wiping someones ass or been more proud to do it!! Just love him!!!! 

8. The judgmental Passive Spectator: Has very little facebook activity– mostly just sits back and watches the horror of facebook unfold while worrying about the state of the world.

We’re fucked.

9. The Workout Obsessed Facebooker. Feelin the burn!!! Gonna be so sore tomorrow!! Will write a status about it at that time!

10. The over-eager Bearer of Bad News Facebooker. Just saw a car that was filled with puppies tumble off the road and burst into flames. Will be thinking about them tonight. 

.

Health, Happiness, Facebooooooook.

Sometimes You Gotta Say Yes.

.

Even when you don’t feel like it. Even when it hurts. When it would be not just easier or more convenient to say no, but less painful, less exhausting, perhaps even, the healthier option– even then, sometimes, you gotta say yes.

As my role as the “sick girl” has slowly developed over the past few years, I’ve noticed how often and how easily I’ve begun to say no to things. And that’s mostly for the sake of my livelihood. I don’t have the endurance to do the things I once did, nor do I have the resilience to bounce back if I overstep the boundary. There’s an invisible line with illnesses like this; one that not even the sick person can see, and it doesn’t make a sound when you overstep. Not until later, when it’s too late to take anything back. So, you pay for it. And you start to feel your way through it, constantly guessing whether you’ve gone too far or done too much. It’s about as easy as pin the tail on the donkey in the dark, with booze. But this solid body of mine, as broken as it is, it always lets me know if I’ve infringed on that boundary. Always.

The last few days have been crappy. Not Colorado crash crappy, but, crappy. There have been a few 26 and 27 pills a day, days. Which I’m learning how to be OK with. Even sick days, where the most you do is brush your teeth, are OK too. They have to be. It’s interesting what this illness turns you into; a spectator where you once a participant. I often feel the quick pace of the world spinning and everyone rushing by with their busy lives, and then there’s me…just kind of, standing lying there. I miss being busy. There’s something comfortable about always having something to do, someone to see; there’s an importance about it. I notice now how different my to-do lists are verses my to-do lists a few years ago. 1. Wash clothes. 2. Pick up prescriptions. 3. Buy new notebook!

I’ve begun examining my life a little closer lately, and am putting a lot of thought into how I spend my time. It’s really crazy to think that I can sort of do what I want given that I don’t have a full-time job or any REAL responsibility besides my health and my dog Monty. (Although I don’t know, one might call my constant correspondence with the Walgreens pharmacy a full-time job in and of itself. For real though.) The thing is, since I can’t hold a full-time job right now, I don’t have any income. So that’s the first damper on “Doing what I want.” The second damper is, duh, I’m incapacitated most of the time. If I had my way, I’d be going, and doing, and meeting, luncheoning, and painting and creating and…you get it. Saying YES a lot. I’d be one of those busy people with alphabetized spice racks and really organized DVD collections. And I’d run half marathons for fun! BLECH. Scuse me, I just puked thinking about running a half marathon. Anyway, that’s not my life. Most of the time I feel too exhausted for showers and everything I buy at this point is on someone else’s dime…so it’s really teaching me a lesson in humility, appreciation, and grace. Every night I pray that I will be able to pay back everyone who has been so gracious in taking care of me. And I solemnly believe that day will come. One day.

In the meantime, I have a lot of something that many people don’t: free time. And whether I’m sick or not, it’s up to me how I spend my time. I find myself feeling bad a lot about not having a full-time job and not being able to support myself. I was used to having  a job and independence define me. But, I think that’s pride and the ego getting the best of me and I constantly have to remind myself that if I could, I would. But right now, it’s not where I am. So how about instead of feeling shitty on top of feeling shitty, I try to make better use of my time. I decided I’m going to read as much as I can, write as much as I can, and start looking at this free time as a gift instead of something that “happened to me.” A lot of people would love time off from work, to be a spectator, to read for the sake of reading. To be honest, not having something to do is harder than you’d think. We’re kind of a culture that tends to define ourselves by our work. I guess I’m redefining both my purpose and the definition of that word. Is it still considered work if you’re not getting paid?

This week has been rough health wise, but today I was sick and tired of being sick and tired more than I was actually sick and tired. SO, I said, screw it. I took a bath, got dressed, and went to the park with Monty. Not because I felt like it, not because it felt good even, but because I needed to get out. Sometimes I do the things I would do if I weren’t sick, just for a little while. I can go outside. I can throw a ball for Monty and finish reading my book. I felt shitty the whole time, but mentally I needed it. Chances are, I’ll pay for it tomorrow. But it’s one of those weeks where I felt like I would be paying for something tomorrow whether or not I did anything today, so I went for it. Every once in a while, it’s nice to feel like things are on my terms. It’s my way of giving the illness the middle finger. And you know what? It felt good! Screw you sickness. Today, Mary Gelpi SAID YES.

So confident.

OK so maybe I am really over-glorifying my little trip to the park. But, I have to keep myself in check. It would be really easy for me to say no to anything that required leaving the house or socializing with people. I can feel the crotchety 80-year-old inside of me getting way too comfortable. I remind myself that I am 28. I need to stop being so opposed to meeting new people. (Dude, I hate meeting people. Also, I’m terrible at it.) I have to be OK with going places sometimes, because I think our souls like a change of scenery. I need to not automatically say no, even though my experience gives me that tendency. Sometimes I will pay for it, yes. But there’s a price to be paid for constantly saying no, too. So I’ve got to find the middle. I’m still young, and I need to start acting my age. Before I know it I’ll be drinking Ensure and wearing Oopse I Crapped My Pants. And then meeting people will be REALLY hard!

You know what else I did today? Bought a new notebook. That’s my favorite thing to buy. I’m very particular when it comes to notebooks. It takes me a while to pick one out and I sit there in front of the shelf of books running my fingers over pages, opening and closing it, taking measurements and looking like a crazy all the while, but I like to take my time. I can’t have things like paper texture or wide rule lines interfering with my writing. Anyway, I found a good one after going back and forth between two for 10 minutes. This is typically what I do when I buy anything. I’m very indecisive. So I’ll buy one, and then go home and think about the other. It’s terrible. Anyway, I’m trying to work on that. So I’m going to do some writing. And then some reading. And then I’ll do it again tomorrow I guess, in a park, and throw the stick for Monty. Because that’s what my life is right now, and it won’t always be that way. Maybe it’s not about  being important. Maybe it’s just about being.

Health, Happiness, Yes.

*To all my family and homies in New Orleans, my thoughts are with yall. Although I’m pretty sure most of you are drunk and having an OK time. Stay safe.

When I Thought About Adulthood, This Is Not What I Expected

In two days I turn 28 years old.

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!

Health, Happiness, Twenty Eight.

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.

15 Fights Every Couple Has

1. The “You Spend Too Much Time With Your Friends and Not Enough Time With Me” Fight. It’s not that I hate your friends, I just think they’re stupid and don’t really want them around. 

2. The “You’re Terrible With Money” Fight. Did we really need these $20,000 life-size Rock ‘Em Sock ‘Em robots?

Yes, yes we did.

3. The “I’m Allowed to Talk Shit About My Family but YOU BETTER NOT” Fight. Excuse me, nobody calls my sister a slut but me.

4. The “You Drink Too Much/Smoke Too Much/Work Too Much/Play Video Games Too Much/Sleep Too Much” Fight. You do all the wrong stuff, too too much.

5. The “ANYTHING Regarding Facebook” Fight.

Who’s that slut who wrote on your wall?

Why haven’t you changed your relationship status?

Why aren’t I in your profile picture?

Why are you still friends with that person?

Why won’t your dad accept my friend request?

Who is Brittny and why did she poke you 2 years ago? Defriend her. NOW. 

6. The “You’re Always Tired When It’s Time for Sex But Wide Awake When the Kardashians Come On” Fight. Come on, you know you love Scott.

Nuff said.

7. The “You Give Terrible Presents” Fight.  Awesome. Another candle. Thanks babe. 

8. The Failure to Agree on a Show You Both Like So You End Up Watching Stuff Neither of You Really Likes Fight. Oh look, No Reservations is on again. 

9. The “I Shouldn’t Have to Ask You To” Fight. Because you should be able to read my mind by now. 

10. The “You Have Terrible Phone Etiquette” Fight. There’s this thing. Called a phone. Try it out…

11. The “If You Like It You Better Put a Ring On It” Fight. Because nothing sets the mood for an engagement like the threat of a breakup. Or physical harm. 

Whoa Oh Oh Uh Oh Oh Oh

12. The “I Was Lying When I Told You I Didn’t Want Anything for My Birthday and You Should Have Known That” Fight. You could have at least gotten me a card. God. 

13. The “You’re Nicer to the Dog Than You Are To Me” Fight. Well he’s a better listener!

Tell me. Everything.

14. The “I Went Through All Your Shit and Found Something That Makes Me Not Trust You Anymore” Fight.  You never told me you ran track in high school.

15. The “If I Didn’t Pick Up After You, Our Apartment Would End Up on Hoarders” Fight.  Why do you put your clothes next to the laundry hamper?

Health, Happiness, Coupledom

10 Things to Avoid (and Embrace) When You’re Depressed.

10 Things to Avoid…

1. F

2. A

3. C

4. E

5. B

6. O

7. O

8. K

9. Ok 8 things.

10. Oh yeah, and Wal-Mart.

Here is the truth; you’re not missing out on anything if you don’t get on Facebook today. I’ll fill you in: Someone got engaged. Someone had a baby. Someone is angry at Obama. Someone cooked spaghetti. And someone is hung-over after going out big last night. But if you spend the day on Facebook, you’re missing out on all the rest. You know, like on life. So now here’s 10 things you can do instead of get on Facebook, that might actually make you feel better.

1. Forgive somebody. There is probably someone or something from your past that needs to be let go of, moved on from, and it might even be you. Letting go of things in the past opens up room for good stuff in the future. Go!

2. Appreciate who and what ya got. Having a gratitude journal sounds super cheesy I know, but once you start writing down everything you’re thankful for everyday, you’ll see very subtly your whole perception change for the better.

3. Create. Make art! Or a sweater! Or music.Or dinner! You’ll be surprised at what you end up making. And have someone in mind when you create. The best gifts are home-made.

I made you this sweater for your dog!

4.Exercise. Even if it’s just a walk outside or 15 minutes of yoga… exercise releases serotonin and adds years to your life. Imagine if you did 10 sit-ups/push-ups for every 10 minutes you spent on Facebook. Everyone would be all muscley and stuff.

5. Bake a cake for someone. Anyone. Just because you love em. It’ll make their day! Let us eat cake.

Because You’re You and I’m Me

6.Organize your closet, dresser, room, or junk drawer. Cleaning things out just feels good, it’s free, and the end result will make you breathe easier.

Aaah.

7. Occupy Wal-Street. Just kidding. Couldn’t think of a good O verb. Uh, organize your second closet!

8. Kidnap someone and bring them on an awesome adventure. Dont actually blindfold them and throw them in the backseat of your car or anything..just bring them to lunch or something. And then maybe antiquing.

9. Read a book. Remember books? Instead of getting lost in an anonymous persons wedding album on Facebook, (ahem, yeah that’s me) get lost  in a book. It’s such an awesome feeling. And you don’t feel like a creeper by the end.

10. Write and send a letter. Not an email, not a text. A real letter, written in your own special handwriting. Old school mail dude, it’s the best! (May take 2 weeks to arrive though. The post office has had a rough year.)

Health, Happiness, Lifebook. (See what I did there?)

Greetings From Bed on Hard Knocks Island

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 it so 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.

Health, Happiness, Crash and Burns