Baby Talk.

Around New Years this year, while I was half dead in a record-setting cold and dreary Colorado, my sister and I were texting. She said that 2013 would be The Year of the Gelpi, as though it were a new hybrid car that ran on water. Among other things, She was going to get pregnant, and I was going to get better; things we’d both been after for a while, but neither one conquered. It’s hard to keep up hope when day after day you feel exquisitely the reality of your circumstance. I often wished I could just take all my sleeping pills, hibernate like a bear, and wake up in the Springtime. All better. But I was also well aware that taking all my sleeping pills meant dying, like for real, like dead dying. Not the day-to-day I feel like I’m dying dying. And I wasn’t ready to call it quits either. I knew there was more to the battle, so I just held on, because that’s all there was to do.

My sister’s situation was a little different. She and her husband decided a few years ago they’d start trying for a baby. Which really meant, they’d just stop trying not to get pregnant. After a year went by with no “success,” my organized, take-control and conquer side of my sister started to monitor every part of the process. Was his stuff OK? Was her stuff OK? Can teeth whitener lessen your chance of pregnancy? Everything checked out OK. We’re just so used to seeing people sneeze and get pregnant that the word “trying” began to take on real meaning. Finally, on her 30th birthday, on a whim she took a pregnancy test, and to her excitement it was positive. I knew that was the best present she could have gotten that year. Yes she was only 4 weeks along but it’s true–she glowed. It was extremely early so they told very few people, even though I remember thinking it was silly. “Let’s tell everyone!” I didn’t understand the need to be so precautionary. I happened to be staying on their couch 2 years ago because, hello, it’s me, that’s what I do. One morning she woke up and said she felt “different.” She had some strange symptoms, and all of her “pregnant” symptoms seemed to have vanished. I told her not to google them because it would only scare her and it’s best to stay calm. Before she could get in to see the doctor, I looked online and cringed as I read many people’s accounts of an early miscarriage–most described her symptoms exactly. I didn’t tell her what I read. I said everybody and every pregnancy is different and we shouldn’t assume anything until she sees the doctor. I prayed for a better outcome, but when he called the house that night, the results weren’t good. The fetus had stopped developing. He was sorry for the news.

I knew it was really hard for her. I don’t know what it feels like to be pregnant, but I know that after you’ve tried and tried and you finally get it, it must be that much harder to lose. It seemed like an unfair teaser. I’ll never forget my sister, brother-in-law, and me standing in their bedroom when she got the news. She hung up and cried a few tears and Keegan and I hugged her. Then she wiped them away and said “I think I want a glass of champagne please.” Keegan was quick to grab a high quality bottle from the kitchen and three glasses. We also ordered sushi, something she’d given up for the pregnancy, and gorged ourselves. Staying true to our morbid sense of humor, we made terrible jokes and tried to have as much fun as we could while we grieved something we couldn’t see.

They would spend the next year and a half meeting with fertility specialists and exploring all their options when it came to having a child. “Who knew it was this hard?” I remember her asking me one day, and admittedly I did not. For one thing, I’m ashamed to admit I watch that show 16 and Pregnant, and those kids make getting knocked up look easy. Not to mention, we’re in the time of everyone and their mother (haha) getting pregnant.

It’s so easy!

It really is quite easy. Cheerio!

Someone make it stop.

I mean, if Snooki can accidentally make a baby, certainly this healthy, loving married couple with financial stability should have a solid shot at it. It threw us all off that you couldn’t just shoot some tequila and let the magic happen. Could you?

After two doctors, a few rounds of fertility drugs and one procedure, there was still no baby. The next step was going to be very invasive and very expensive. In late Fall, they decided to hit the pause button on the whole charade. No more fertility drugs. A break from the doctors. They were going to let the rest of 2012 finish with as little stress as possible, and pick up where they left off in 2013. The Holiday’s came. We ate gourmet food and drank good wine. 2013 approached and the funny thing is, that night my sister was texting me that this was going to be our year, she didn’t realize that half of the dream had already come true. Inside, a tiny miracle was beginning. And after learning what all is required to take place in order for life to begin, there really is no other way to put it. It is a miracle. I don’t really mind how cheesy it sounds. I also don’t understand how so many people don’t intend to get pregnant but do, because A LOT HAS TO HAPPEN FOR IT TO WORK. But wouldn’t you know it, they got liquored up on Christmas, and well..you know the rest. Apparently the Snooki method works!

Today is my sister’s birthday and I know that it’s a special one. I haven’t given up that my dream will come true too. She’ll have a baby and I’ll get better. But I’m realistic. I know I won’t just wake up one day healed. The key to getting healthy for me is to be at a point where I can manage it effectively. Where I can function and not spend multiple days or weeks in bed. Where I can be proactive and not reactive with treating my symptoms. And where I can remain hopeful, enthused and optimistic even when I feel the worst of it. I have to learn how to find happiness and peace, regardless of my physical state. And I don’t think it’s impossible. It will take dedication and determination and support, but hey, it’s only April. I’m going to be an aunt again in September, so that gives me five months to get in shape. No matter the state of my health, we’re all looking forward to new life in the Fall. We’ve long awaited that little miracle.

Health, Happiness, Babies.

A List of Mildly Pleasing Things.

The sound a rotary phone makes
When you hang up the receiver.

The smell of tires
And how you know before you walk in
the door of the auto shop
that the computer will be old,
and the colors will be red and black.

The sound of ice in a glass
And a something liquid gold
pouring slowly in.

When Monty’s Tail Wags While He’s Sleeping.

Riding in a cab
In New York City,
going anywhere.
The urban slideshow
through a square cracked window
slows down the fast city.
and the driver mumbling
in a quiet language an American girl
who’s pretty
will never need to know.

The way Gwyneth Paltrow smokes cigarettes in The Talented Mr. Ripley.

.

The second of stillness
When you drive under a bridge in the rain.

New showering products.

A woman tying a man’s tie.

The crinkling of a newspaper
When a man eats his breakfast
With one leg crossed over the other.

Being a woman
Wearing a dress
Smelling romantic
and the clicking of heels
on the old wooden floor
toward whoever spent the time waiting.

A fresh piece of chalk
on school chalkboards.
And the slowness and fragility
of that 90 year old librarian
Who stamps the due date in my book
with her veiny tissue hands.

That feeling you get
When you kiss someone new.
Like everything is different
Though everything’s the same.

Health, Happiness, and Tiny Little Pleasures.

Good News.

I never write on Sundays, but I have a little energy today and after a sick and cloudy week, I’m taking advantage of some mental clarity. The truth is I don’t have a lot of news physically. I have been the weakest I’ve been in my life. It’s a little nuts. It feels like trying to move through maple syrup. So life has been in slow motion, literally. But as always, I have help and constantly remind myself how lucky I am for it.

The real challenge with this latest crash has been maintaining emotional resilience. I remind myself of the same idea each time it gets overwhelming; this is only temporary. And when times are golden and everything is going perfectly, that will be only temporary too. The point is to find inner peace and joy that is resilient through circumstance. So just look at the bad times as intense training. Training isn’t forever. At some point you go out into the game and test your skills. And no doubt, the world will always provide you with situations in which to test yourself and what you’ve learned. This year has had a lot of training and a lot of tests, but a part me feels that I am only just beginning to understand any of it.

Since I have a lot of down time, not moving and all, I do a lot of weird things. Like look at nothing out of a window for a long period of time, not really knowing how long has passed when I snap back to present. Sometimes I listen to Debussey’s Claire de Lune over and over and over and just feel the aliveness of a song like that, even though I feel like only a half-alive body. I watch French movies on Fridays because verbally, it sounds nice. French Movie Fridays. Also I love French movies. I write down things in my notebook that I don’t immediately understand or know from where they come; sometimes I just feel like the person holding the pen, channeling something else altogether, something separate from me. Deepak Chopra would say there is no separate, there is no you and no me. Each person manifests the entire universe, all of the people, and the source itself, within themselves– thus separation is just a human illusion. This is why when you hurt someone else, you hurt yourself. This is the oneness found in “waking up.” This is how he explains the part of you that isn’t born and won’t die. It embodies it all, and it is eternal. So I guess some of the things I write down are being pulled from an all-access consciousness that has always existed. I don’t know. Maybe getting sick is what it would take for me to stop and pay attention, to finally write down dormant words, to know what it is to be alive. I just know sometimes I write things that are far more intelligent than I am and I don’t even feel right taking credit for them. Except the White Girls on Facebook post, that was me.

There’s a funny phenomena that happens when I’m sick: Once I start to feel better and recover, I can never remember how sick I was or how bad it felt. I can imagine it but I can’t feel it. It’s like my brain deletes the sense memory of it. I have read that this happens to women after childbirth, and I guess it’s an evolutionary survival mechanism. If women remembered how bad it hurt, they’d never have more babies! It’s like the worst hangover you’ve ever had. You swear you won’t do it again, but then the beer tastes so good and the buzz is so nice! I don’t know what the meaning is behind not being able to recall precisely the physical feelings, but being this weak and incapable feels pretty burned in my mind by now. I may not be able to access these feelings again once I’m better, but what I need to remember is that shit, life is fragile. One day you wake up and you’re too weak to walk and your mom and sister have to feed you. It’s not all pretty, but I know there is meaning in it. It’s easy to throw up your arms and scream WELL WOE IS ME,  life is unfair and none of this matters. And I’ve done that some days. The problem in doing this is that the very conclusion leaves your experience meaningless. The suffering is the hard part, but if you can hold on, if you learn to live anyway, then you’ve transcended the pain and evolved and it wasn’t for nothing; growth can never be bad. Following the pain always comes pleasure, even if it’s a simple change in perspective. Plenty of people have experienced far greater tragedies than me and come out on the other side– happy and wise. Like my mom for instance, who survived the death of two husbands, but didn’t succumb to darkness and managed to emerge happy and loving.

The goal in all of this for me is not just to stay positive and hopeful, but also to keep my perspective wide and my problems right-sized. This is just a moment in the context of eternity. It’s still really hard but it’s not forever and I’m not on my own. It’s easy to feel like the world is really big and you are really small and your little problems are terrible but that they don’t really matter. But they do, and you do. The way to make them matter most is to conquer them– with humility, grace, whatever you got. Everyone has their battles and each leads to their own lessons and outcomes, all necessary for the evolution of the world. But we all have to do our part. I don’t pretend to know how it all works, and I don’t think we’re meant to know the whole truth in this limited dimension we live in. That may explain why I had a dream last night that TRANSCENDED TIME AND SPACE and I have no idea how to put it into words. I probably sound like a kid during his first experience of dropping acid, but some things we just can’t fathom on earth. And that’s fine. We just need to do our best.

So I’m going to keep trying. Keep hanging on. Keep reading what the Greats have to say and try to make sense of it all. It’s been a challenge to stay optimistic and happy, but I know it’s necessary and I will work just as hard at that as getting better physically. In that light, I’ll introduce a new project that begins tomorrow. I’m going to report a few minutes of only good news every day for 30 days. I’ll begin with personal good news (like, I had enough energy to take a shower today!) then report national good news and then worldly good news. The idea is simple- I’m too young to be cynical. My situation is depressing enough and I don’t want to keep watching the news to see how crappy the world is and how bad people are. It’s important to stay informed on events, but I think it’s just as important to see the good things people are doing and the positive stories too. So that is the newest project and I will post the first video tomorrow around 6–that seems like a newsy time doesn’t it? I will always wear a plaid shirt because plaid makes me happy and I have a lot of them and we’re striving for good vibes here. To give you an idea of things I won’t be talking about, here is the backdrop to my very high tech news desk.

Watch the good news at goodnewsinplaid.wordpress.com.

**Addendum! I jumped the gun on my 6 o clock timeline. I’m a little behind. But the good news is now up at goodnewsinplaid@wordpress.com. If you have good news you’d like me to read on air, send it to goodnewsinplaid@gmail.com. It can be anything from your little league team won to you’ve been constipated for a week and maybe you finally had a bowel movement. If it’s good, it’s good.

Health, Happiness, Plaid.

One Thing, Once a Day.

I love getting late birthday presents in the mail. Wait, I love getting mail period. For one thing, I think the art of letter writing is becoming extinct, so it’s always pretty special to get something written in one of a kind hand-writing, written just for you. Dear Mary… Anyway, late birthday presents are like those blooper scenes they show during the credits of a movie you liked. Just when you thought it was over–bam! My brother Nick and his wife Estee sent me two new shirts and a skirt and a necklace with a hand-written card, the best! And my sister brought me shopping at Nordstrom. Her and Keegan have kind of adopted me as their 28-year-old child. Keegan even sent me to my room yesterday. I also unpacked my suitcase at their house two weeks ago, the first time I’ve really not lived out of my suitcase since February. All my siblings are like extra parents, each pitching in to help in their own ways and I am really thankful for that. It’s easy for me to forget that my situation could be a lot worse. They have all encouraged me to visit them, and that is a real gift. Anyway, I love shopping and I love new clothes, but it has turned into such a silly thing for me to love, mostly because I never wear normal clothes anymore. I never really go anywhere and I hardly see people besides Monty and my family. My uniform has evolved into leggings and t-shirts–every guys fantasy.

Last week and all weekend was a sick week. Like a sick day, but you know, times 7. I once wrote that I was the mayor of Migraine City, but I am upgrading myself this week to Governor because my head is super angry about something and apparently wants the world to know. Here’s your shot head, let it all out! Every day I keep telling myself I will get dressed in my new clothes and I will go somewhere and I’ll do my hair and makeup and look like someone who has her shit together. But, that has yet to happen. “Tomorrow” I tell myself. Then the song from Annie starts playing in my mind and I bet my bottom dollar that tomorrow there’ll be sun, and I will go out in it! Since I’m in Cali, there is always sun, but when you have a migraine, it feels like if you were to go outside under that bright sun you’d start melting like the witch from the Wizard of Oz. Anyway, the migraine cycle continues, but why am I talking about migraine cycles? I’m even boring myself.

When I’m in the throes of a sick week, I can start to get down. And also start to go stir crazy. So there are a few things I do and a few things I don’t do. Maybe most importantly, I do not watch TV during the day. There is just something undeniably sad about daytime television, and sunlight coming in through the blinds..maybe reflecting off the TV screen? Yuck. The only time I don’t find a sunlights’ reflection on a TV screen depressing is on the weekends when we’re watching football. Exceptions to every rule.

First, I keep a book on hand and I read. I swear it’s like I’ve discovered the joy of reading only last year..at age 27. Pretty ridiculous since I discovered the joy of writing at around age 9. I feel like I’m catching up on all the years that I began books and never finished them. I always associated reading a book with homework, something I had to do. It never felt like I had a choice in the matter. As soon as book reports became part of my schooling in 6th grade, it became my goal to see how little of the book I could read and how high a grade on the report I could get. Unfortunately, I work really well under pressure–so the night before it was due I’d skim through the book, find the important parts, and write a flowery report. I almost always received A’s on them. I was actually proud of myself for being able to complete the work this way! What an idiot. Anyway, now that I have really experienced what getting lost in a book is like, I feel like I have years of catching up to do. So that’s partly what I’m doing. Especially because it’s not sad at all to read while sunlight is coming through the window. In fact it’s the most fun to go outside and read. Monty and I had been going to the park daily, but I crashed mid-week and we haven’t been back yet. Anyway, right now I’m reading Wild by Cheryl Strayed. A true story about a woman who lost her way and decided to hike the Pacific Crest Trail by herself, with no experience. Truthfully, it’s a little difficult to read because she is in a lot of physical and emotional pain so far, and I like reading to carry me away from real life, so in that light it’s not been as fun to read as Gone Girl but I’m just about 1/3 in, so I’ll see how the next 50 pages go.

The second thing I do is create something. It can be anything from a four line poem to a line drawing. The goal is not to create a masterpiece work of art. The goal is to let your soul do some talking. Sometimes what you make will be crappy and sometimes you’ll surprise yourself. But the thing is, now no matter how sick or worthless I felt today or the fact that I never got dressed in real clothes, at least when someone asks me what I did today I can say “I wrote a poem,” or “I drew a picture of a stupid cat.” So now today was not a complete waste. Here are some simple rhyming poems.

*I am tired
But do not sleep
I am sad
But do not weep
I close my eyes
And count to 10
If I still feel it
I’ll do it again
Until the clouds part
And the dark clears
I’ll think of my loves
And not of my fears.

*In the corners of my mind
In the absence of a dime
I think about home
In a house that isn’t mine.

*At night I roam
through consciousness alone
Would I have chosen this
If I would have known!

*At least at the end of day
Where I never got dressed
I can say I wrote a poem
And that’s something I guess.

Normally I hate rhyming poems, and I don’t necessarily love these. But, they’re what came out. So I let them. Because that’s what my soul had to say today, and it doesn’t really matter whether it’s good or bad. It’s the fear of making something good or bad that is dangerous. Once I let that fear go, I kind of free myself. The worst that can happen is you write a shitty poem or you draw a shitty picture. Certainly there are worse things! Either way, you’ve got something to look back on or laugh at or talk about, and you weren’t completely at the mercy of illness.

.

I drew the above drawing a few days ago. It turned out to be one of my favorites…drawn on a sick day where I never got dressed. It started with a very simple shape; a leaf. Then I repeated the pattern and this is what turned up. I had no idea what I was sitting down to draw that day, but it’s another example of letting your soul speak. Or stillness speak. I just know that when I designate time to letting things come through me, I am usually surprised. I end up creating something I never could have thought of myself. It’s strange, the way sometimes your dreams can be insanely more creative or smarter than you are in real life. I guess it’s the subconscious at work. This one is titled “I Don’t Normally Look Like This” and is for sale for $10.

Anyway, that’s been the last 7 days. Fingers crossed that tomorrow is migraine free and filled with more energy and I get to wear some happy clothes and run errands like humans do. If not, well then…it’s back to the drawing board.

Health, Happiness, One Thing a Day.

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.

The Killers Relief

When I wake up
Everything is just how I left it
In between tossing and sheets
sweating and dream world,
the killers wore off
And it’s as though nothing has changed
I still feel everything.

Because the hour is inappropriate
To start a day now,
I re-dose and wait
And this is admittedly exciting for me
That’s what they call
The thrill of relief.
When the killers go to work
I will struggle but win eventually
I’ll go back to dreaming
Where everything is the same.

I heard once
That you don’t feel pain in your dreams
Which makes me wonder
Where I’ve been going every night.

Last night I dreamt of money
And big powerful bankers.
I counted my money repeatedly
And my fingers throbbed
Until I dropped it all
watched it scatter
When I awoke I couldn’t recall the amount
Something had changed
But my fingers ached the same.

When I awake a final time
It will be inappropriately late
To start a day
Everything that once was numbed
Will have seeped back in,
alive and noisy.
The jury is out
On the purpose of pain
But each night it comes
Then the killers kill it
And I return to dream world
Until it comes again.
When I awake,
Everything the same.

Hard Knocks Island

If you’re like me, you’ve never heard of a place called Fisher Island. That was true until last January, when my mom found a CFIDS specialist with a clinic in Miami, and my brother happened to be engaged to someone who was from there. Without ever having met my mom or me, the soon-to-be in-laws invited us to stay with them when we came to the clinic for the first time. We would soon learn that they didn’t live in Miami exactly, they lived on Fisher Island; a private, man-made island only accessible by ferry or boat once your name has been added to a list and cleared by the guard. It’s like an exclusive night club but bigger and islandier and your money’s no good here. You buy everything through an account number. Your cash might as well be monopoly money.

It’s a real testament to my brother’s future in-laws that we were welcomed with such open arms. We could have been a bunch of crazies for all they knew. Hadn’t they met my brother? It was pretty immediately a Mi Casa Su Casa situation, accept it was more like My Island Your Island. It is exquisitely clean, beautiful and pristine here. There are pools galore though I never see anybody swimming in them. There is a private beach with a restaurant a few feet away. Theoretically you could effectively choose your own sushi menu right out of the ocean. That tuna there! I want that one! It’s something like Disney World meets the South of France. I’ve never seen or experienced anything like it. Whatever it is, of all the places to be sick, this one ranks in my top 3.

Before my first trip out here in 2011, I had spent most of the month of January in a horizontal position at my mom’s house. I was horribly depressed. I was watching everything familiar to me, all the things I defined myself by, slip slowly away with my health. It wasn’t easy watching or letting any of those things go. But I remember feeling the tiniest bit hopeful when my brother Nick called me the night before I was due to depart. “Dude are you ready for Miami?!” Sometimes even hearing the energy in someone elses voice could exhaust me in its own way. I groaned and said something about needing to pack but not having the energy to do the laundry. I remember he was so cheerful and said “All you need is a bathing suit. There’s a lot of sitting around and doing nothing on Fisher Island.”  I closed my eyes and let those words hang in the air. “Sounds perfect.”

As promised, we were welcomed with enthusiasm as soon as the ferry docked. I remember entering their home and feeling like Little Orphan Annie entering Daddy Warbucks house–which is funny because Estee’s dad slightly resembles Daddy Warbucks.  Every room was beautiful and had what I consider to be the most important detail in any room; large and bright windows–most with a view of the ocean. I suddenly felt really lucky to exist, and that glimmer of hope I had on the phone with Nick came back as I hugged the new members of our family and they insisted we eat dinner even though it was past 10. I remember my doctor’s appointment wasn’t until two days after we arrived, and thank God it wasn’t because most of the next day was spent in bed with a killer migraine and that ever so seductive hit-by-a-truck feeling. The only difference was, this time I woke up in a beautiful room with a breathtaking view. And to some extent, that did make a difference. It at least softened the blow of it all. I remember taking migraine medicine and going back to sleep. And when I did, something happened something that continues to happen. I fell asleep but could hear real life happening outside the door. I would try to yell or move to wake up but felt paralyzed and voiceless. This happens to me often when I take naps and I don’t know if it’s a part of the illness or something separate entirely, but it is unsettling. I finally escaped dream world to find that Nick and Estee brought lunch into my room on a tray and sat with me while I ate. Looking back on that time now, I can’t believe what a fog it was and how bad I felt. I remember Nick trying to convince me to read the book “Freedom” by Jonathan Franzen but any time I would try to begin reading, the words would fall out of chronological order and I’d have to keep re-reading them, or I’d start to feel car sick and put it down after just a few sentences. (Luckily that symptom has mostly passed and 2012 has been filled with books!) I went to bed that night wondering what Dr. Klimas would be like. I prayed hard for two things. I prayed that we would get answers, (real answers) and I prayed that I wouldn’t find out I was crazy. By that time, I really started to question my sanity. If enough people look at you sceptically, express disbelief, or tell you you’re experiencing something psychosomatic and not actual illness, you’re going to start to question yourself, no matter how bad you feel.

To make a long story short, my prayers seemed to have been heard. For one thing, only after Dr. Klimas ran extensive tests and blood work (my initial visit at the clinic lasted seven hours) did we finally get some answers that made sense. Finally, it was explained why I always felt like I was about to faint any time I stood up or any time I had to stay standing. I had Postural Orthostatic Hypotension due to low blood volume. This diagnosis was made in under 30 minutes using a tilt-table test. (You can request this from your doctor.) The best part is, it’s totally fixable. There’s a word we love. I take atenolol in the morning and try to consume 12 ounces of fluid containing electrolytes. Atenolol prevents your heart from jumping up to 140 bpm when standing upright and controls the severe fluctuation of blood pressure. This is what I mean about answers. When these symptoms were told to one of my other doctors he told me to drink more water. She also explained how the chronic migraines are typically a result of brain inflammation (a primary condition of CFS) and how dehydration is one of the biggest triggers for migraines. (And also that prescription migraine medicine tends to dehydrate you) So especially on travel days, you should double your liquids. And you can’t just drink water. You need electrolytes. Probably the biggest diagnosis that came from that first round of tests was news that I had Lyme Disease and we would start aggressive antibiotics to get it under control. But beyond the interview, the tests, the drawing of blood, the explanations in scientific and layman’s terms, stands out one particular moment between Dr. Klimas and me. She had just finished drawing blood when I admitted to her that I had been really worried that I was going to come to the clinic and be told that I was crazy. Then we both kind of laughed and she told me that in all her time working with this illness, there has been one patient who was certifiably crazy, and that was an extreme case. “People who come here aren’t crazy, they mostly just want their lives back.” I exhaled. Finally. Validation. I had never wanted to hug a doctor so much in my life.

I’m going back to Dr. Klimas on Friday, and in the meantime am enjoying Fisher Island with family and as always, working on staying present. You know what helps me stay present? Views like this:

And golf carts like this…

And this…

And babies that pose like this…

And smile like this…

All of those things help, at least a little. I’ll report on the doctors visit next. Until then…

Health, Happiness, and Cadillac Golf Carts.