I do not have big plans for the weekend.

But thank you for asking!

5 months ago, the day before Easter, and in the middle of inhaling a piece of ice cream cake, my phone rang. I ignored it, because it was my doctor’s office and I thought it was weird they’d call on a Saturday. Then they called again.

“Ugh,” I thought, excusing myself to the other room. I answered with a bit a tone.

“Caira, your labs are back. Can you come in first thing Monday morning?”

Now, I’m not sure if you’ve ever received this kind of phone call, but nothing desirous ever results from this line of questioning. The reason you’d be asked to come in right away is never because you’re so great and they just miss you, or they accidentally overcharged you a thousand dollars and want to give you a refund. It’s like when your boss needs to see you at the end of the day in his office, and someone from HR is already in there. Or when you text someone after a second date, asking how their day was, and they reply, “good u?”.

I actually couldn’t go in to the office, first thing Monday morning. I was leaving the next morning at 5am for Seattle, embarking on a weeklong road trip down the Pacific Coast Highway.

I explained this to the doctor.

“Caira, your blood sugar is very, very high. [My first name was being used a lot here?] We need to check how much insulin your pancreas is making.”

“Um, ok.”

In a 2013 essay for the New Yorker, author Meghan O’Rourke wrote about the strangeness in telling an illness narrative without an inception. The piece was specifically about autoimmune diseases and the slow, creeping way they moved in to the body and mind over a period of years. When I read it, it was over breakfast, and at a time when late night Google searches for phrases like “headache and dizziness”, or “symptoms exhaustion nausea” had taken over my evenings. 

 O’Rourke said “Illness narratives usually have startling beginnings — the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine.”


Not mine.
It was this phrase in particular that stuck with me, and would eventually resurface when I discovered I had Grave’s Disease in the fall of 2014. 

The hunt for Grave’s  was awkward and painful – Months of insomnia and weirdness and twitching, proceeding years of diarrhea and blood sugar fluctuations. It appeared, finally, one humid and anticlimactic August morning.

If Grave’s Disease had been Prince William’s courtship of Kate Middleton (get on with it already), then Type 1 Diabetes was definitely Rob Kardashian’s of Blac Chyna. (Wait, WHAT?)

And so I stood, phone in hand, overloaded with sugar and disbelief, for just a moment, staring out the window into the street. Then I turned and left the room, and sat back down at the dining table with my family.

 

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I’ll dance at your wedding.

Two of my favorite people in the world married each other last night in Philadelphia.

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The occasion brought together a collection of loved ones from different points in life. We met on the dance floor in sweaty, joyous circles. Time had passed but for a few hours, none at all.

A few times, I nipped up to my room for extra glucose tablets, and to check my blood sugar. I didn’t eat the cake. I switched to water after a glass of whiskey.

One of the best parts was replaying it all today. The couple’s vows to each other, and the warmth of reconnecting to love I’d never lost. Reopening to friends I hadn’t seen.

It looks a little different now, than when it all began. It is a little different now, than when it started. But the essence remains the same.

My Theory of Everything

Now that I feel mostly well, the times that I don’t mean that I, along with that trusty, timeless text on human anatomy, wikipedia.com, are up until 2am “diagnosing” the autoimmune epistemology of critical conditions like “rash”, “indigestion” or “groggy”.

In the early days of December, I returned to my beloved New York after five weeks traipsing through Madrid, Hong Kong, Tokyo and Seoul. I was delighted to be home. I was overjoyed to almost need a winter coat.  I was acutely aware something was amiss.

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Seoul does offer a nice view, however

 

A comprehensive, after-midnight Google investigation gave me the answer I was looking for. At the tenuous age of almost 32, I’d obviously developed lactose intolerance. It obviously stemmed in part from my Grave’s Disease, and in response I would adjust my diet accordingly and start living my best life. Happy new year!

Several days of non-improved misery later, I went to the real doctor – a gastroenterologist with degrees – and he said, “This isn’t your fault. It’s likely a bug you picked up somewhere. Have you been traveling lately?”

“Yes.”

Oh.

Oopsie.

 

Inside Out

What you probably know about this blog is that it documents my experience with Grave’s Disease. What you probably don’t know about this blog is that the idea for it came to me while I was in the bathroom.

A year ago, on sick leave and at my cousin’s house in the suburbs, I was freshly diagnosed and 100% miserable. Kind of like 100% Diesel, but the exact opposite. My cousin was kind enough to let me wallow around in her house for a week and do very little, except sweatily watch movies and drink decaffeinated coffee.

It was on the third day, sometime in between the First Nap Of The Afternoon and Googling the chances of my hair falling out, that I padded into the Torrey household hall bathroom, looked at my hollowed face in the mirror and shouted Eureka!

I would write about this. I would share this story and see if it resonated with anyone else. I would live it, and write it, and it would be the way to make sense of it all. There was something there, something below the sad surface, that knew this was going to be OK. Something that knew, a year later, I’d be back in my cousin’s bathroom, staring into the mirror with full cheeks and a stabilized metabolism. (Who doesn’t dream of such things?)

I was scrolling through old photographs on my phone and arrived to ones taken in June of 2014. It’s my face, but the red rims around the eyes give it away. I see a sick person now, in those photos. I see the watery, staring eyeballs, glazed and huge, and remember what was going on behind them. I doubt a stranger glancing through the pictures would notice the difference. But I do.

Also, I spend a lot of time in my cousin’s bathroom.

Head Case

I have a nightly habit of writing in a journal whatever I’m feeling at that time. It doubles as a process to pen through the stuff and write some kind of resolution to what’s going on in my head.  Sometimes I read through old entries and my thoughts sound poetic. Mostly they are just embarrassing and after I cringe and put the notebook away, I vow to never go back and reread entries. From July 14, 2014, in scrawling green pen, is this question:

Why don’t I feel well?

The words are printed in bold, whiny letters and the ink bleeds through to the next page. When I run my finger over the lines, I feel it dented three pages deep.  I remember the day I wrote it because I remember ripping the drawer from its track to take the pen out.  I didn’t have the answer.

There are some 50 million Americans with autoimmune diseases and most of them begin their illness in the dark, fumbling through protracted bouts of insomnia or depression or nerve pain, until finally, a lab comes back or an infection lasts too long and a diagnosis is pronounced.

The early signs of autoimmune disease are more subjective – they can be described as an overheated 30 year-old lamenting to her journal that she doesn’t feel well, plagued by obscure joint aches. Sometimes it’s nothing you can SEE. It’s nothing you can measure. You’re presenting yourself as a classification of person where there’s vaguely something wrong with you but you’re also kind of OK. Like Nicholas Cage.

(Sorry, Nicholas Cage).

I don’t know what happens next.

What It’s Like.

I hadn’t heard of Grave’s Disease until the morning I began drug therapy to treat it, so I don’t mind when people ask me what it’s like or what it is. The issue becomes when I have their full attention and I see the light go out of their eyes because I’m not delivering the goods. A Grave’s overview doesn’t exactly bring the heat.

“Well, one night last year, as summer was really getting going, I had trouble falling asleep,” I’ll begin. “And then, I noticed an odd tremor in my right shoulder, followed by increased headaches.”

By the time I launch into when the anxiety was full-blown and I was sweating all the time, the crowd has mysteriously dispersed to the bar for another round. Or to check their phone. Or to wait what were you saying again?

So, Grave’s Disease is an autoimmune disease that affects the thyroid and causes it to over-produce. When the thyroid is in overdrive, the body goes berserk – it causes your heart to beat too fast, your thoughts to race. It causes insomnia, sweating and tremors, your eyes to bulge out. Before I knew I had the disease, I actually thought I was going insane. At first, the symptoms are easy to rationalize away – Oh, I live in New York, of course I can’t sleep and am anxious. Oh, it’s summertime, no wonder I’m having hot flashes…at age 30. Eventually, the symptoms culminate in such irrational thoughts and behaviors, you wind up at the doctor or in the emergency room. That was my experience. I’ve talked to a number of wide-eyed folks who share the same. (Yes we know, our eyes are huge).

What There Is:

Dizziness, fogginess, anxiousness

Wondering if it counts as illness when you feel OK. Wondering if this is the best it will ever be when you don’t

Occasionally wearing sunglasses at night to use the computer

Frequent eye drops. More ibuprofen. Less booze. Sweating with caffeine

Knowing the location of every public restroom near the 4/5 train stops on your commute to work

Waiting for Missy Elliot to agree to a Walk for the Cure, for godssake

Occasional growth of things where they don’t belong, like nodules. Occasional loss of things where you’d prefer they stay, like hair

An entry point of conversation with Sia

What There Isn’t:

Bleeding, dying, smoking

General clinging to life

Things falling out, or off

Consistent information on what not to eat (or wear, for that matter)

A cure

Better answers

Certainty

At present, I don’t look sick. Today, thankfully, I do not feel sick. When I explain that I am being treated, there is the collective and conclusive urge to wrap it all up, to proclaim “You’re well at last!” And for me to say “Yes, it’s OK!” so we can end our conversation and move on.  To discuss an ongoing and incurable disease is to agree to a narrative without climax. My particular illness moves in fits and starts. One morning early last winter I woke up with an odd feeling in my head, and blacked out mid hallway shuffle to the bathroom. Other days I shell out exorbitant amounts of money for New York spinning class and feel like a tigress.

This is what it’s like.

There Is No Safe Housing

It happened when I hung up the phone with the insurance company. My ear was warm and sore from holding the phone too close while the voice on the other end droned on about claims I needed to process. The call ended and in the silence I saw the piles of wet clothes and the soggy plaster bits from the ceiling were still there, and something inside cracked. My face contorted and I cried into my blanket. There is no bigger, better purpose to any of this. I was alone, and it was wet. A flip neighbor went out the previous night, New York’s coldest night in 20 years, and left her window open. A pipe froze, burst and drained into my apartment walls.  If the neighbor was home now, she’d hear the drooling, empty howl coming up through her floor.

After several minutes, I stood up to get a tissue and kicked the giant trashcan in front of my bed. It barely moved. It was full of dirty ceiling water, some of which feebly sloshed over the sides when I kicked it again. Suddenly I wanted WRECKAGE. I wanted to hurl that stupid, rubber immovable bin out the window and chuck the pieces of window glass across the room. The pitiful stack of damp sweaters were not enough. I would shred them and throw them into the garbage before I would wear any of them again. I wanted visceral damage. I wanted my apartment to bleed. I wanted to call that dry, even-voiced insurance adjuster back up and tell him there was internal studio hemorrhaging and no amount of placid pressure could stop it.

I blew my nose and had to lay back against my damp pillow. The thumping in my ears subsided and mid afternoon shadows came in through the window, the room darker and quieter now without electricity. Three low hoots from an invisible owl came in too. Every couple of minutes, a piece of ceiling plopped when it hit the floor. It was my 31st birthday.

In the last 8 months, I’ve noticed that on a given day, I can walk down the sidewalk and smile at strangers who smile back. There are chirps and honks and evidence of the city’s changing seasons. On the inside I wonder if I would feel ashamed to walk down the sidewalk with great, bulging eyes. I think about what it’d be like to wear my thyroid on the outside of my neck, dangling in a little plastic bag at the base of my throat, like a necklace. I could point to it when people asked how I was. “My thyroid overacts,” I’d say with a knowing look. “Sometimes I take it out and cool it off so the rest of me can take a breather. Look here.” It is on the sidewalk sometimes, on a perfectly reasonable afternoon, that the desire to explain what is happening overwhelms me.

The morning my ceiling collapsed, my last as a 30-year-old, I awoke with a headache. Light greeted me through the window. It was snowing. My room was silent.

“Look,” I said to myself. “Can we just go easy, today? I know you want to go all existential today because of your birthday tomorrow, but what if…what if we just take it easy? Let’s just take a break and let it be quiet, let us move across floors and rooms with ease today and stop wondering what it all means.”

I sighed and rolled over. Something behind me began to hiss.

Who is taking a shower in my closet?

I turned my head around and squinted one eye, to hear properly. “Someone must be washing the roof.” The sound of liquid rushed against the windows, at first like it was raining, and then like the roof drain had been overturned. My ceiling light flickered. I got out of bed and pulled back the curtain.  Black water pooled onto the ledge. My feet were wet.

“What?”

On the other side of the room the closet door opened on its own. A single stream of water spat from top to bottom – an invisible cherub statued atop my pile of sweaters, pissing directly onto the floor. Behind me, the ceiling light coughed, almost politely, before it too began spitting up water. A warning belch. I leapt across the room and hit the lights.

Pop goes the weasel

Pop goes the weasel

 

 

 

 

 

 

 

I moved quietly through the rest of the day, collecting wet belongings from the floor, pushing furniture into dry corners and emptying pots and bowls when they were full, so they could start again.  It was the next day I cried, when I returned to an apartment that reeked of mildew and saw what had once been my stuff for what it now was – piles of wet shit.

A week later, I was back in the building and in a new apartment. Each night after work, I stopped by old Apartment 3 to see if the door was locked. It never was. The ceiling was gutted, and its insides were still on the floor. It looked smaller, and smelled like a locker room. I’d walk in and set my purse down on the floor. One night, I tiptoed into the middle of what was my living room and sat down. Something began to ache. This just wasn’t my home anymore.

My friend Sam saw the connection before I did. In a letter she wrote, “I suspect that the missing link here, what has not made it onto paper, is that just as your apartment, your housing, let you down, so too did your fleshly housing become unreliable. Caira. There is no safe housing.”

Oh.

The good news is, I don’t smell like mold.

I Have Two Words For Missy Elliot

I know what you’re thinking. “Caira, you and Missy Elliot already have so much in common besides Grave’s Disease. I was surprised when I learned she had it last week, but given your likeness, I am now less so.”

That’s not what you thought at all.

I’ve been waiting for Missy Elliot to come back. The first second thing I did the day I got my diagnosis was Google “Celebrities with Grave’s Disease.” A semi-informative read from 2011 stated Missy had the disease and had been out of the spotlight for several years because of it. Save for her best-of compilation released in 2006, the last time she had a new album on the charts was 2005. “She’ll be back,” I thought. I need her to come back and talk about this – because no one knows what this is and she’ll give voice to it.

And then all of a sudden, there she was – Katy Perry’s sharks be damned.

Oh, hey

 

In the days following, the Internet produced myriad reactions to Missy’s reemergence –  her inextricable ties to the context of today’s female rappers, vapid musings on her weight loss, .GIF-ication of the the word “chocha.”

But I only have two words for Missy Elliot.

One morning in early December I awoke feeling strange. I imagine it’s what you’d feel if someone left a heating pad plugged in, but in the inside of your head. How did this rock get inside my head, I wondered? What’s this dark center doing in the middle of my cranium? I rolled over, too quickly. I saw the room through strips and when I blinked they didn’t move. Well, this is a problem. Walking to the bathroom I lost control of the muscles in my legs and was on the floor, cheek against the tile. When I moved it was blurry.

It turned out that after months of excessive racing, my heart beat had taken a warm dip in the other direction.  My first suggestion was coffee – I’ll take 24 caffeinated cups to go, please – but the doctor felt a boring day at the hospital hooked up to a monitor was a more reasonable course of action.  After several groggy hours, the final test was administered.

The technician, she smiled at me and pointed to the ultra sound. “You get to see your heart today,” she said in accented inflection. I was Dorothy.  The reason for all the fuss appeared on the screen. A pulsing blob, beating soft, low, alive. Innocent.  “That’s your heart, she said. “Take good care of it.”

“I will,” I said.

I watched it beat until they peeled the patches off my chest, leaving gummy rings behind. “Thank you,” I said, as someone appeared to wheel me away.

It’s what I said when my friend arrived that morning to my apartment, to help me from my couch to the hospital – both of us having made the inexplainable choice to wear neon shoes.

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It’s what I said on the first day of 2015, when I realized it’s never straightforward and always better because of it.

And it’s what I said again as Missy returned to the stage in all her slick, racing-suited glory – moving, rapping, having a ball. Thank you.

Thank you, thank you, thank you.

The Case Of the Omnipotently Raised Eyebrow

One sweaty Tuesday morning in August, I walked into an endocrinology clinic in New York City’s Flatiron district. I spent fifteen minutes in the lobby, twelve in an adjoining office and seventeen in a dressing gown, listening as the doctor reviewed options for my diagnosis – surgery, which I didn’t need, radioactive iodine, which I wasn’t ready for, and drug therapy, which I’d start the next day. Some key terms – autoimmune, hyperthyroidism, goiter – made sense, and I walked back out into the daylight less than an hour after I’d walked in. The next morning, I started swallowing pills for a disease I suddenly had, that I hadn’t heard of 24 hours prior.

I didn’t go into work that day, or for the rest of the week. I passed my time alternating between thoughts of “It’d be really convenient if I didn’t have to go to work again” and “Thank God I have a job.”

The thing about Grave’s Disease is that if you passed me on the sidewalk, you wouldn’t think there was something wrong. You wouldn’t say to yourself, “You know, I bet she has a weird autoimmune disease, that one. Look at the slight staring quality of her eyes. See there how her elevated heart rate pulses uncomfortably.” No, that doesn’t happen. No one thinks that.  I don’t look sick. Sometimes I don’t feel sick. Sometimes I even forget there are things I’m not supposed to do, or eat, and then I suddenly feel TERRIBLE and remember – ah, yes. That. That manageable thing I have that is not a tragedy, but rather a perennial rock in my shoe.

There was a fair amount of fuss when I was started showing signs of illness, followed by a fairer amount at onset of treatment, followed by what I deem the omnipotent Raised Eyebrow regard for my condition.

A loved one calls to ask, “So, how are you feeling?” and I can actually sense their eyebrows. I can feel them through the phone. They are raised at me, wary and untrusting, knowing I am not healed from this incurable nuisance but that we’d all prefer I felt as fine as I say I do. Sometimes my reassurance is the truth.

Last night at dinner, on the final eve of the year 2014, I heard myself bring up Grave’s Disease, unprompted, two different times. Why was I speaking about illness at a public restaurant (versus the private confines of the Internet)? How did autoimmune disease work itself into light conversation with strangers?

If you enjoy writing things down to understand them, and are fortunate to have friends who support this practice, you may receive handwritten cards in the mail from time to time musing on such. I received one in December that pondered the following:

“I wonder how you are doing, if illness has created for you a before and an after.

In cataloging what happened – what is happening – to your body, how are you understanding the damage? It can be scary to be rent from your own flesh.”

I was equal parts touched and terrified by the letter’s text. All of my flesh, (#blessed), is still attached, but there are moments when I panic and wonder if today will be the last day I have the normal amount of protrusion in my eye sockets.

It’s a funny thing, to have a chronic condition. For someone with tendencies seared in compulsion to process and metabolize and reflect, the idea of having to let go of sense and continually work with and around something is new. Is uncomfortable. But this is part of where I am. And in time I’ll look back and see it was part of where I was. It’s what helps make up (some of) the stories I tell. It’s part of what fuels uncontrollable anxiety and part of what assuages the need for utmost control.

Happy new year, to you.

On Motherhood, Kind Of

Like all useful information, I found it on the Internet.

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“Well, look at that,” I thought. I can’t be pregnant on these drugs I’ve just swallowed without reading the warning label, and I may not be able to get pregnant with the disease I’ve just been told I have.

This was not discussed during the diagnosis. My doctor, a kindly chap with hearing aids and patience for the times I’ve since asked about the weight I’ll lose or gain when he *adjusts my dosage, needed barely 20 minutes to declare Grave’s Disease. “The staring quality of your eyes – I noticed it as soon as you stood up in the lobby.” I was wired that first day. I was damp, I was uncomfortable and I was shaking my foot the entire physical exam.  “I just need to know what’s wrong so I can go back to work,” I explained in the little room they take you in to ask boring questions. I jiggled my knee in rhythm with my pulse. He shuffled around the room doing bizarre little things -measuring protrusion of orbital structures, stenciling goiter onto paper.

You mean this staring quality?

**Disclaimer #1** I have gained exactly 1lb since beginning drug therapy for Grave’s Disease.

I hadn’t been able to sit at my desk, but I figured as soon as I knew what was wrong, I’d be able to go in and sit down, finally. Like a normal person. I am so over this sweaty bullshit, I thought, flipping hair off my face.

It was mid-August, the sun as unforgiving as the thumping in my chest.

**Trouble conceiving was not mentioned during the diagnosis. And why would it be? I’m single. I say “omg” in texts. The idea of coming home at the end of the workday and something requiring more attention than what I give to the coffee grounds I spilled on my way out that morning is unimaginable. No one said that if I wanted to get pregnant over the next year, the drugs I’d put into my body occasionally cause fetuses to develop without nipples. No one said anything about the miscarriage rate in Grave’s women post medication. No one suggested I reconsider family planning, period.

**Disclaimer # 2** I am not trying to get pregnant right now.

But. Oh yes, and with this shit, you can say you won’t go there, but yes you will – What. If. What if I were ready? What if I weren’t single, and didn’t live in New York and had more than $14 dollars in my “savings” account? What if I didn’t want to dedicate my life exclusively to the pursuit of my career goals?

Guess which of the above is not like the other.

I lived in Chile for a good while, and used to look up places I wanted to live and jobs I could do – separate from the job I had and place was living. Sometime in between that second and third year in Santiago, a coworker and I were chatting about the occasional strangeness of our lives, and that from time to time we forgot we were the ones who’d chosen to live them this way.

He said, ” I want to escape a lot and run away, but then I remember I already am away.” The look on his face when he said it – there we were, longing for anything else right smack in the middle of what we used to look for.

I don’t want to spend the rest of my life hot after my own agenda.  I’m lucky to have a job I like to do, in a city I want to do it. I’m glad it came after years of restlessness and navel-gazing 20s wallowing and wandering. I’m thrilled I indulged a bunch of peculiar, reckless (sorry, Mom) curious ideas when I could afford the luxury. It’s not that I’ve lost the urge to travel or try new things, it’s that I’ve given up on the idea that a particular adventure will make sense of who I am. I’ve been here the entire time.

I used to think that if I made it into a relationship, it said something positive about me – that I’d overcome pre-existing deficiencies in character, childhood. It used to be why I feared but also clung to the idea of a partnership, of motherhood – the inevitability of being tied to something you couldn’t control, but that it was somehow right or better to be part of someone else’s story. See above re: 20s wallowing.

Fortunately, I let that nonsense go.

For my what ifs, I presently have 0/100th of the answers, which suits fine in Month 3 of medication.

But I sure can and will stare at you.