Introduction: The Picture of Health

"Darling, you look too healthy to have all those problems." I'm imagining you reading this phrase with some kind of drawl to it. I have heard some iteration of those words since being about 16. "You just look..." I can look like a lot of things--a grad student, a wife, a female, a dog snuggler, a friend--but I rarely look sick. Despite appearances, I've managed to rack up a bit of a list of autoimmune and other chronic conditions. While rarely life-threatening, living with chronic illness instilled in me a love of the 8 pm bedtime and a frustration towards people who glare when I use my handicap parking placard. 

While my looks are the most commented on, I am continually asked: "What is it like?" And rather than admit that I have historically been too lazy to meditate on that question/it bums me out, I answer with a smidgen of humor and move along. In what little ruminating, I have done, my words cannot show the handfuls of meds I take every morning and night to keep this body going. Or the laugh lines of my Love after an especially weird joke about my body. I have talked for years about trying to convey photographically those moments. Out of that same laziness (and probably fear about vulnerability), I have yet to follow through. 2016 will be the year. And since New Years resolutions are also meant to be broken, if I fail I can chalk it up to too much New Years gumption. 

The content found here is less about my daily life and more divided into experiential categories-- such as body, hospitals, friends, daily shenanigans, etc.. I want to attend to the unconventional ways this body speaks in my life. I want to learn to listen to this body of mine. While the comments will be turned off on posts, if you feel the need to comment or write you may do so by clicking "contact" above. 

In short, my name is Kate, and I've lived with some form of illness since being a kid. I snuggle my pup and cat, live with a boy, and find taking photos a useful way of communication. Thank you for visiting. 

2016 in Memoriam

 

I am the first to make a joke of myself. The memes have declared 2016 is a dumpster-fire year. Not just for me, but for you too. None of us have completely escaped the flame's singe. So don't hold it against me if I don't reveal to you the complete truth. It can be too painful to look our situations in the eye. We're all there, been there, or pretending we are not there. 

2016 I cannot speak too deeply of you. 

A year ago I learned I would need to spend the first weeks of 2016 in the hospital. And that trip revealed that a few months later some doc would be slipping little wires into my heart. Which then led to the unpleasant experiments in medication dosing and interactions. Heart rates up and down, kidneys becoming sensitive to the chemicals, this body just so tired.


And this year, this year has been marked by grief and my world turned inside out in more ways than just my body.  I lack sane words. So while I could write about-- which feels shitty-- I’ll stick with the visual. So 2016, in memoriam-- this is all I've got. 

January - Enough said. 

February - Spent more times within these walls than out. 

March - slow healing, dear friends. 

April - When kids remind you to stay hopeful

IMG_9885.jpg

May - All the therapy a brain can muster - if we're real honest this has been years, but God was there a lot of therapy in May. 

June - Changes

July - when support knows no distance

September - getting stronger

 

October - Watching the best friend get married--being able to support and care for those I love deeply. 

November - set backs. 

December - I have no images. Maybe one of me and the pup going on one of our many adventures into the leafless forests. The small sanity that she brings into the chaos. I am just so thankful that 2016 is ending and hopeful that 2017 will be better. Poems on forest fires-- here and here. A beautiful story on trees here.

I voted.

On the day I voted for a woman,

I wore lipstick and a t-shirt with a unicorn.

I stood in line and waited.

I cast a ballot.

I ate a burger.

 

On the day I voted for a woman,

I remembered laying on the floor in Mrs. Glovier’s kindergarten class.

Sharpie outline.

I wanted to be teacher.

The girl next to me wanted to be president.

While no one said it, there was the feeling

            Our little girl bodies were unequipped for such a task.

 

On the day I voted for a woman,

I remembered sitting in a van full of other 13 year olds.

The driver commented:

            Women can’t be presidents because of PMS, he said.

One of many lessons to teach me to hate my body.

 

On the day I voted for a woman,

A punk-ass dick pulled over his car

To tell me about my body,

To see if I wanted to date him.

 

On the day I voted for a woman,

I remembered my little faith in political offices.

And I paid my first installment on my new health insurance plan

            It will be one-third of my pay.

           And I felt penalized for having this body.

I offered a little (even if lost) prayer that thing might be different.

 

On the day I voted for a woman,

I saw a little brown girl wrapped tight around a mother’s legs.

She cast her ballot, and handed her the sticker.

          Her mother announced, “she’s next.”

On the day I voted for a woman I was reminded

         Imagination is powerful.  

Be Unhealed

 

Sometimes I preach. People always seem surprised by this. Possibly because I always verge on saying the sacrilegious thing—possibly because (to my mother’s chagrin) I have no filter when it comes to my language. Most the time I write my sermons in a bar (and if you know me you know the bar) where the owner always gets a kick out of me preaching and sometimes reads over my shoulder as a write. But I preach. And I did. On my body in fact. Which was strange. But after a very long month—here is August’s fulfillment of my New Year’s resolution—another a stranger resolution—to preach on healing. 

a current revival present here in durham (i did not preach here).

a current revival present here in durham (i did not preach here).

Be Unhealed.

John 5:1-9

 

New Years resolutions. We make them. We break them. We forget about them, until January, 1 rolls around again and in our failure we make them again. That is unless you—I—fatefully tell Catherine your New Years resolution. Because you told her that your resolution this year was to figure out how to preach on healing—to preach from one of the healing passages. She emails your pastor saying you are going to preach.  Because she believes that much in your resolution. Because you yourself are trying to figure out how to exist as a body that is sick and a body that believes in God. Because well—because she and I, and maybe we here together, are trying to hold onto this wily faith. And I tell you all this because now here dances the line between preaching good news and dealing with the personal. Then why shouldn’t it? Healing remains nothing but an act of the utmost personal. Whether you watch someone else heal. Or you are healed yourself.

I.

When Bible stories were read to me as a child I took them literally. All you need is the faith of a mustard seed to move a mountain. I went to my first grade school library and looked up how big a mustard seed was. Tiny. Incy-wincy. Not much faith at all. So if you needed that little faith to move a mountain, you probably needed less to move a hill. Mom found me outside after school staring at the tree-lined hills that surround our house yelling, “Move!” After a long explanation about metaphors, I concluded they suck and that sometimes I wanted for a more literal Jesus. Like one who when we pray for a mountain to move would actually move it. Or when we pray for healing—heals.

This became more true after Dad’s MS put him in the hospital and then home care for a while. At the wizened age of 14 I already assumed that the miracles wouldn’t happen. I could pulp the words of our holy scriptures into a paste and apply it directly to his body—as a healing ointment—nothing would change. I could blend them into the solution I learned to inject into his IV every night and their greatest power would be giving him ink poisoning. I overheard the many people who came in and out of our house, placing hands on him in prayer—nothing happened. And I resented every last one of them.

And then it was my turn to become the patient at 15—to partake in the family tradition of chronic disease. Dad taught me how to enter the temples of the high priests of Science. He taught me how to give freely the offerings of my blood and tissues. I took their potions and subjected myself to their wishes. My dad taught me how to find hope in their multicolored-and varied-viscous substances I swallowed, injected, infused.  And when that was done Mom would take Dad and me before any pastor or priest who would pray. I developed acne on my forehead from being anointed with oil so many times. I resented them all.

I resented the doctors and their vague answers, the unquenchable desire for more data and test. I resented the nurses who lied and said this wouldn’t hurt. And more so I resented everyone who tried to touch my body to pray—their breathy words falling from their mouths onto my head with vague condemnation of my own sin.  I resented their platitudes about looking pretty—becoming a fine young lady “despite.” They questioned how I would go off to college or insinuated that all I needed was to hold out for someone to care for me—“a man.” I resented every sermon that used physical healing as a sterilized life lesson to understand something deeper about God’s love or wisdom. And if there ever was a puddle to be sitting next to, one in which the waters would be stirred up to sooth this body—I felt as though I had no means of getting there.

And time’s movement has provided some wisdom nuggets—watch carefully who is holding anything labeled “holy oil,” it’s alright to be picky about community, it’s ok to tell nice church people no thank you when they ask to pray over you. But as of yet the fear and anxiety of this space with an “unhealed” body has yet to find a quelling. Even as I sit here I am feeling all the ways that my body in this pulpit is different than the bodies who preached the last couple weeks, and those bodies who will stand here in the weeks to come. Sitting feels vulnerable. Feeling my heart speed up and slow down feels vulnerable- I hope not to pass out. (If I do, just get me some salt water?).  

And I feel all this because we have a tradition that loves healing. We have a holy text that loves healing—infused within its words are dusty, sweaty, magnificent bodies. Bodies that move and live and speak and act. Bodies that get sick and die. Bodies that are raised from the dead and are healed. A scripture that invites our bodies to clasp the text and move within and around its words. And we wrestle so deeply with so many of those words that require our bodily actions. To place the words on our tongues and feel them form in our mouths and speak them aloud together.

But healing—healing confounds.

I am not talking about healing in the metaphorical sense. That way we talk about healing apart from the body—that kind of healing that TV preachers who write New York Times best sellers talk about. Where it’s really not healing, but a bunch of self-help bull shit that makes pretty fire kindling. I am talking about blood and sinew stitching itself back together. Feeling the limits of our bodies—its strength; weakness, resilience, and precarity wrapped up into the same skin. The aches after that run where your muscles rebuild—the aches after that surgery when your muscle must learn to become one again. Because when Jesus’ body lived—when his body died—when Mary found his body outside a tomb, it was a body. A really real body—with skin pricks and splinters. At least for the Bible tells me so.

II.

A man sat outside the gate by the pool of Bethesda

For 38 years he lived and tired within his body. Known not by a name, but by a serious of diagnoses. When his symptoms started he paid no attention—they were minor. Soreness and fatigue. Maybe the doctor’s tried really hard to diagnose him. Or maybe he avoided the doctor—afraid of the knowledge. Maybe he couldn’t afford the doctor. But whatever brought him to that—the Sheep’s Gate, the pool of Bethsaida, known for their healing, he lay there for 38 years. By a pool. With many others like him.

It remains unknown why the man named by diagnoses sits alone.

Perhaps he feared asking too much—he already felt the malignant rejection of relationships in which he was once so entwined, because his body was too much.

Perhaps he did have a friend here or there, but when symptoms arose—when his body revealed itself as ill—they did not know how to respond. They sent nice texts about how they missed him and wished he would hang out more. They tried to pretend his illness wasn’t there. So he took the hint.

The man of many diagnoses starts to hear the stirring around him. He pays no attention until an unfamiliar voice addresses him.

“Do you want to be made well?”

Stupid question—what does that mean, made well? The heavily diagnosed man contemplates that absurd question and responds with a reasonable answer—“That water over there, that would be so soothing, I can’t get to because I’ve got nobody.”

“Walk,” The unfamiliar voice replies.

Now clearly the text doesn’t say this, but I imagine the man of many diagnoses had an initial thought after that command— and it was “idiot.” Until he felt the neural fibers in his legs make his muscles twitch, which hadn’t happened in decades.  And his eyes clouded with light and blurred figures. Healing. The man of many diagnoses now needs a name, because he no longer carried those illnesses in his body.

III.

There was no one to lay him in the therapeutic water. No one. That part of the story sticks in my throat. He said, “I don’t have anyone to carry me.” More than the physical healing—that I find myself a wee bit jealous of—I can’t let go his response. It draws to mind that other Bible story of childhood about friends who so desperately wanted their pal to be healed that they dug a hole in a roof. And this man was surrounded by the people always coming in and out of these gates, and still no one to hold his body—no one to touch him, no one to offer such a small comfort, to lay him in the water for 38 years.

To have no one when everyone is present—when I read healing in this story, part of what I read is a healing from having no one. Maybe it’s my own experience with that profound kind of loneliness, where you are surrounded and untouched, or maybe it’s the way the healed man takes off running and the work of his body gives meaning to Sabbath (to rest). I imagine him running off to another community. Maybe even this one.

I don’t know what to do with a Jesus who claims God as healer—a Jesus who gives us healing in a holy text and leaves us with to reckon with our bodies. And while I (want to) hold God accountable for the ways we are left to feel our unhealing—our atomic fragility—I also thank God that in good measure we are not left to feel it alone. I thank God that I have found a community willing to work through the fears of touching awkward and fragile bodies. We are here to carry one another to the waters, to be those waters.

IV.

When I first moved to Durham and found this small community I had a series of ER visits. My first semester of div. school, it was just me and Jane the Cat trying to hold it together. It’s hard to put into words the weight of trying to hold it together and care for a body that at times even resists me, and the care I offer it. But you all without knowing me brought me groceries and invited me to dinner, making me meals to accommodated my ever-changing dietary limitations.

And if I am that one outside the gate—you came and held my body. You wept and swore and kicked the dust with me when it failed again. You picked it up and kissed it—unafraid of it. You fed me soup.  You gave me wine. You let me nap on your couches when I couldn’t get home. What I have found here is a community that invited me into your waiting for healing.

If I have “good news” for you today, it’s that being unhealed is made easier by this place.

If I have a message for you: don’t be stingy with that love, and may invite those who need healing to wait with us.

 

 

 

 

 

 

 

 

 

Super Powers

i. 

You can have one super power in the world, what would it be? And no, it can’t be more super powers – don’t be an ass.

I’ve thought hard about this one. It would be “beverage vision.”

What the hell is “beverage vision?” It’s where I can make any beverage of my desire appear before me. Look there—Whiskey. Wine. Coffee. Smoothie.

Or for you. When you are sad, sick, or celebratory. Beer. Tea. Champagne. Sparkling rosé, if you so desire. 

We can imbibe our love and nurse our emotions.

Janna - babe of wine and bourbon. 

Janna - babe of wine and bourbon. 

 

ii.

I have been on more diets than a first-year college student.

No meat. No gluten.

Yes, gluten. Yes, meat. Organic.

But no dairy. Wait, yes to dairy, but organic.

But no MSG. No Autolyzed Yeast Extract. I eliminated those in the third grade.

What is Autolyzed Yeast Extract? Hell if I know. But it sends me straight to the ER.

I can eat gluten again? But low fiber. No fiber? Low fat? Low carb? High protein?

Soft food. I think that’s the current one.

The hell with it, give me the fries. 

And to hell with all these diets, and that feeling of nausea. May I take for granted the feeling of fullness—

Satisfaction.

My body did not always treat me this way. I use to nibble and indulge it all. But not today. Today I haven’t indulged a thing.

Catherine brings me soup. She set flowers on my table. She brings some new life into my home. After pouring broth into the bowl with care, I watch her hands steady the spoon and walk it to me on the couch. Catherine sits in the chair in my living room. Without my glasses all I see are her long limbs and curly hair. She knows not to ask questions about how I feel—how I feel brought her to me. The conversation drifts casually on to the Kardashians and what outfit Kourtney is wearing—because it's absurd and should be talked about.

I am in one of those seasons. My body cannot hold food. It cannot hold itself. So Catherine has come, broth in hand. Trying to hold all that she can. And despite being slender in frame, she seems to be able to hold my body, my home; my relentless mind in one scoop of her arm. 

The taste of food, tainted by what I know will come of it, vanished for a moment. When I lift the spoon to my mouth, I barely taste your soup. It tastes like love. And I have never tasted this before.

Catherine, patron saint of soup and not judging reality-TV preferences. 

Catherine, patron saint of soup and not judging reality-TV preferences. 

 

 

Casey Brewer- Who loves through cocktails and pups alike.

iii.

In a post-op room, with walls made of curtains, I failed to dress myself. My drugged legs would not cooperate. After several disappointing attempts to operate the simple engineering of pants, Casey, 8 inches and 40 pounds smaller than me, took control. Between my medicated antics she coaxed my limbs into their vestiges. Until she stops half way, clutching my shirt and my modesty she stares at me down and declares without prudence, “you have amazing boobs!” In seconds I am a heap on the bed—my body uncontrolled (once again) in laughter and we both notice our dear friend Scott scooting his feet swiftly from the fabric partitions.

I remember only a few things from that day: Casey’s compliment, talking extensively about my fear of clowns on ride home, and Scott making Casey and me dinner in my 600 square foot apartment as I lay out on the couch. Food laced with laughter.

 

isaac. 

isaac. 

iv.

When Isaac visits, he brings poetry and Locopops. When he reads by my bedside, my eyes get heavy. Not with sleep but with peace.  He brings books of poetry, as we have established that as either a shared interest or my favorite genre to be read allowed—likely a collaboration of the two. He reads slowly—cautiously—offering attention to the words in a way I think the author would hope for—appreciative of every comma. I eat my popsicle and enjoy feeling refreshed. And when He finishes the poem, the stanza, the small vignette, his mouth folds up at the corners, his eyes crinkle, and he lets out a beguiling laugh while staring down at the page asking, “What does that mean!?” I open my eyes and cannot be more thankful for the pieces of conversation that follow. It’s a subtle but meaningful distraction from the IV pole, the hospital sheets; the pervasive smell of synthetic lemon that lingers in the air.

v.

Only having turned 21 a few weeks before graduating college, one could still smell the teenager on me. Naomi and I travailed the Lake Erie coast that June every moment I was freed from my home of the month—the Cleveland Clinic. I have been to the Emerald City, and I took my friends, and there I met the wizard. But while we waited to meet the wizard we drove the lakeshores and the metro parks. Noah and the Whale’s folk ballad 5 years time crooned as we cruised. (In five years time we’ll be walking around the zoo, and there will be love in our bodies and the elephants too.) We let our still teen-girl arms dangle out the car windows and sang the lyrics as we wondered where we would be in five years. We bobbed in and out of stores with teenage girl brokeness. We held on unashamedly to our teenage girl dreams and ordered beers at the local bar with teenage girl insecurity. This was because the Emerald City was not a place to be a kid anymore. We did not meet endeared costumed people who would spiff us up and roll out the carpet. Instead, I was dressed down, and Naomi held my very teenage girl hand as I went through my first round of tests without my mom in the room. A surreal rite of passage into adulthood.  (And it was fun fun fun when we were drinking--It was fun fun fun when we were drunk--And it was fun fun fun when we were laughing). We were no longer kids, teenagers, and we felt it together in that moment. After we drove, with Lake Erie to the North and the Parks to the South to a small bar and ordered one beer to share and didn’t talk about our dreams. We didn’t talk about our future, but played Scrabble. Silently rearranging the tiles, exchanging sips, theses frustration couldn’t also be talked down or dreamt away.  The Wizards would not give us answers. With the knowledge of our fresh college degrees, that June we also learned the balm that a cold beer and a friend can give to cull some of life’s deeper disappointments.  

21 year old Kate and Naomi finding life in Cleveland. 

21 year old Kate and Naomi finding life in Cleveland. 

vi.

If I do have super-powers, (Lupus-powers some might call them) it’s drop of the hat biologic vulnerability—the ability to bring strangers together in shared concern over another’s human frailty and store managers into an instant panic about a lawsuit. Look at you mister, in the candle aisle in this fair Target. We stand here, you and I, contemplating very different evenings with these here candles. We are subconsciously bonding over candles. Maybe we bonded stronger than we thought because BAM, my blood pressure drops and you are now asking me for my name and if I need water and offering the care of a caretaker to a beloved or a babysitter to a child.  Or maybe it’s not the mister in the Target; maybe you are my coworker or my colleague or some stranger at a bar who assumed I was drunk after that one sip.

 

I do not have super powers. I cannot make a beverage appear before you.

I cannot will it. I have tried and will, for the rest of this life, continue to try to have beverage vision.  Because I will never relinquish the idea that beverage vision would be the greatest of the super powers.

 

But I have found those with the power at their fingertips.

 

They offer their sweet nectar freely, abundantly, with love.

 

And with them, I imbibe our love and nurse our emotions.  

Fatigue.

i.

This month has been peppered with fatigue. I am not a poet (though if I could choose to be anything in another life I would be either a poet or a dancer.) I am not even a writer (though having a blog allows me to pretend to be one once a month). And I probably won’t even finish this blog (because right now after 14 hours of sleep I feel I could sleep another 14).

So this is all I got. 

ii. 

Fatigue (a crappy poem)

I’m wearing a snowsuit in July sun.

You talk, I try to respond

To what you said,

about your aunt

about your job

your garden's fledging bean stalks

But despite effort beyond effort,

my mind turns away-

            from our time together

            from the pastries on our plates

And returns to the polyester,

that is melting into my skin.

iii.

Few people know Olive is the poet in the family, quiet famed in canine circles. A regular master of prose. Snout facing out the east windows, she contemplates the birds, the changing leaves, the unknown dog taking a dump on the sidewalk.

But you can’t hear it. Only I can hear it. Call it a woman and her pup ESP.

Olive isn’t your regular ink slinger. She does not care to make permanent her rhymes. She writes her poetry in subtle nods and glances. With her head in the swoop of my back, she presses in deeply, as though offering a healing incantation--to relieve the pain, to supply the energy. She might repeat her little poem for hours or days as I lay curled in bed, on the couch, in a chair. Her patience is part of the performance. She writes her poems in the excited spins she twirls when I lace up my shoes for a walk, ready to celebrate and trod on our small clumps of earth. She writes her poems on the grass she rolls in, body content

Two drinks in we sometimes attempt to recite her poems to each other. We attempt to put into human words her well-nuanced pup dialect only to find that we bastardized and made humorous the whole endeavor.

Birthday suit.

i. 

I was born April 2. A very pink baby with a full head of black hair. My birthday suit pudged with the rolls of newborn fat. Mom loves to tell the story of Dad wanting to finish watching the basketball game when she declared the start of labor. I, wrapped so tight inside my mom’s skin, wrote a story of myself on her body through stretch marks. When they finally arrived at the hospital, I declared my still well-maintained obstinance and delayed my arrival 72 hours longer.  I wrote myself more permanently on her fair skin through cesarean scars. She would always tell me I was her kid because she had the scars to prove it. And I don’t mind her telling me so because that is the story of my entrance into this world—where my own skin enters the world.

My skin fascinates me in that it remains an organ I can watch generate and regenerate while it holds onto its unique branding. I have a birthmark that looks like a spaceship hovering over my belly button and another mark that shades my right palm. Age keeps bringing this skin life-marks—a scar on my hip from the childhood dog dragging me down a path in a failed squirrel-chase, a reddening across my cheeks as symptoms of my disease, small scars populating my abdomen from various procedures, a couple of tattoos that make my mother cringe. This skin—so complicated and delicate.   

ii.

Every three months, the nurse hands me a form that asks if anything has changed. Skin, hair, nails. A detailed inventory of remission, stagnation, or progression. Every visit I check the small boxes. I wonder how much they can tell the doctor about my skin. The categories area always as follows: 

Legs/Feet: 

My knees show a well-played childhood. Look carefully enough you will see the scar from when I wiped out on my bike the first time I tried to ride it on two wheels. It was right before church. Mom was peeved.  But it was worth it to prove to Adam, the boy at school who always found something to pick on me about, that I too could be “cool.” And by cool I mean—because these are first grade standards—that girls can get dirty and not care. Then he almost puked when I ripped off the bandage. Totally worth it.

While I no longer freak out the Adams of my life with impressive wounds, I have been known to panic a doctor or two with my lack of circulation trick. This trick usually involves me sitting, doing nothing, and one of my legs turn a dark purple. I admit this trick is most enjoyable with doctors with whom I’ve had little or no previous contact. To bring it back I just wait. It's not really a trick. 

IMG_8358-3.jpg

Head:

“Headache,” Ms. Conaway read the spelling word, “as in I hope today Katelyn does not get a headache. Headache.”

I was already beginning to feel the tingle on the right side of my face that for most of elementary school became my primary predictor of an ensuing migraine. Now, I was the third-grade spelling lesson. I burrowed my face into my paper scratching out the letters. I got it wrong. Because, despite my ability to define the experience, my spelling remained terrible. If only this had been a lesson in comprehension.

Face:

The rash used to be small—only on one cheek. And you could only see it when I was out in the sun. But now it always sits subtly on the edge of my skin, bridging my nose and making a home on the other side of my face. In a world of glossy magazine covers and the Sephora black-hole, it's hard not to feel mildly to wildly self-conscious about it.  So, I buy expensive products to calm, cover, and protect. And like that no one knows—sometimes not even me—that the mark of my illness is right there all along.   

Arms/Hands:

I didn’t hold hands with a boy until I was in college. Mostly for two reasons. First, most of the boys around where I grew up couldn’t keep up (read I was awkward and they were little shits). Second, no one could touch my arms or hands for almost two years without my involuntary tears of agony. My arms felt wrapped in thick tendons. It was hard to know how seriously to take this. But when mom sat down next to me, accidentally brushing up against my hands, resulting in my screams, she saw my hands were bright, almost flaming, red. She could feel the residual heat of my skin burning. The pain spread from my hands to other parts of my body. I lived in a vice made of skin. After three weeks in the hospital I was able to be a normalish kid again (My sister tells me normal should be saved for other people). I could hold books. I could stand outside in the midst of wind. I could hold some little shit’s hand.   

Skin: 

Little scars have begun to congregate on this skin—a little biopsy there, a little surgery here.  I no longer find them impressive, but I do still hope tropes about “men with scars being sexy” can be applied to women. And more than that I hope that they keep me appreciative of all the wear this skin must endure for everything it holds bellow.  

 

iii.

Skin. I regret challenging myself to think about this skin, to photograph this skin. Mostly because this has been hard, and I feel like I failed. But also because skin is not just skin. My skin. Pink, sometimes red, sometimes purple. While holding this body and all its complexities, this skin engages the world—sometimes without my awareness. Without my awareness, my skin is seen, and looked at, and thought about, and commented on. And sometimes I am made privy of those comments.

Like when I walk down the street…

            Or sit with a friend…

                        Or sit by myself…

                                    Or ride the bus…

                                                Or…

                                                            Or…

                                                                        Or…

 

Because it’s not enough that my skin has to do the miraculous work of gift wrapping all these organs. It’s not enough that this delicate skin has to be an organ unto itself and stay living. This skin, this delicate skin, no thinner than a few millimeters deep, must find itself continuously looked upon. Continuously commented upon. Continuously not entirely its own. And I wish I could give my skin the gift of skin. 

 

The Moment of Becoming Chronic.

i. Dear physician— 

You, physician, describe yourself as a lifeguard.

I openly admit, my experience with lifeguards as limited—either sensationalized Bay Watch babes or post-pubescent teens picking their noses while getting tans.  In both scenarios I know one thing to be true—when a person begins to drown, you jump down off your stand, let the wind catch you hair, and you run. With all power you muster in your legs, you run. Because your job as a lifeguard rests in the name. You guard life. You throw out the raft, reeling in the drowning buffoon who thought it would be cute to take a swim after too many beers and possesses the coordination and aquatic buoyancy of a drunken ostrich. 

So, if I could explain one thing to you, my physician—it’s how you are not a lifeguard. You are not a lifeguard because you often use the words “wait and see.” And when you are the one with the tired, uncoordinated legs, “wait and see” are unappealing words to hear from a lifeguard.  Those words, instead feel like you are trying to teach me how to swim amidst the drowning. Those words do not feel like you running, hair in the wind, muscles pumping out of your body, to come and save me.

It feels like I’m that stupid buffoon stuck in the kelp—just trying to tread water. You, physician, you have the life raft. At least, that’s how it looks to me.

 

And you say—Wait, and we will see.

 

And I say—I’m growing tired.

 

And you say—you can make it longer.

 

But, is this living?

 

But we need Data.

 

But this is my life.                Can I have the raft now? My arms and legs are tired.

 

Just a little longer.

 

And that there, dear physician, is how months and years fold into each other. How you have trained me so well to be aware and suspicious of every feeling in this body. And then you tell me to trust you—you say you won’t really let me drown. And you make awkward jokes that most of your patients haven’t died. (That dear, lifeguard-physician, is not helpful.)

But I don’t want to get to near drowning. I would like to get to near not-drowned.

So maybe, dear physician, you should not call yourself a lifeguard. Maybe we need to find more words for the work you do—the way you hold, move, shape, the lives of the people you treat. Your indelible hands helping to determine my tomorrows.  

Pre-op preparations 

Pre-op preparations 

ii. Dear person reading this—

I could tell you about the procedure—if you want to know. I could tell you about the special soap they sent me home with; that had special instructions on how to scrub my body. How it wasn’t soap but a sponge with plastic bristles. I could tell you how it made me itch.

I could tell you about waiting in pre-op. I could tell you about how many pregnancy tests they made me take –which felt absurd (but I guess they wanted to be sure they were only dealing with one heart, not two?).  I could tell about being introduced to the eight other people in the procedure room—how they introduced themselves and shook my hand, how they made me feel human. I could tell you about being made exposed, how I was the only naked body. They made me modest with special stickers. Covered me all up with them to keep all the electricity in my body. And I could talk about being woken up in the middle of it, laying on the table—feeling it all happen. But really, those are the parts I care about least. Except to say they happened.

The parts I care to tell you about or the ones that never happened. How they fixed the problem. How when they wheeled me into post-op and my groggy eyes opened, I would look up at my Love and smile. We are better. How the pangs of recovery were filled with the hope of physical therapy and being able to run again.

But instead, I am learning, again, how Diagnosis turns Chronic. Where words like “observation” and “collect data” are words that carry their own rituals and rites. Instead, I care to say that after the nurses left and I was alone, feeling hot tears involuntarily form and stream—mouthing the silent prayers of “Oh, fuck,” another day and another day and another day keep coming. And new routines are becoming less new. And incisions heal. Scars form. And this inexplicable body still continues—and people bring soup. And laughs are still had. And more tears have come. And I might just be more resilient than I thought. 

pre-op soap-up. 

pre-op soap-up. 

iii. Dear those who brought the Tupperware— 

To you, dear saints of the Tupperware, this month healing did not come in the form of Medicine or Science. (Or Magic. Because I am always waiting for the Magic and the abracadabra.) Instead, healing came in plastic tubs. You, pilgrims with porridge, filled these tubs with soup and ice cream. You brought these gifts to me, to my family, and sat with me on my front porch. Or in my living room. Or at my table.

I ate your food. And damn, you are good at cooking. Or buying rotisserie chickens. Or picking up burritos. You have excellent taste in ingredients. You know when to bring a Popsicle. When to bring the wine. If life with chronic illness feels like perpetual interruption, you interrupted the interruption. 

You brought books. You brought laughs. You made the incision in my chest hurt. A kind of hurt that reminded me the joy of being so well loved. 

post-op love. 

post-op love. 

Heart.

i. got no heart

“You got heart, kid,” says some coach to every kid playing a sport in some small town in America.

You got heart. You are in the game. You got passion. And that passion, worn on your sleeve. That passion, worn on your face and in your tears. That passion that keeps you angry when you lose the “big game.” That passion that makes the win seem like a small glory.

I never played sports or won the big game. My sister did. She had heart. I felt the house shake from feet stomping up stares after losses. And I watched her shoot countless hoops by herself on weeknights until mom called her in. Her sweat carried the weight of her pulse as it hit the gym floor. The tall girls underestimated, at their own peril, her 5’3” frame. Nothing stopped her. She had heart.

I never had heart. The one time I tried to play basketball I felt the anxiety of the game rise. I ran this way and that. I felt the muscles in my legs tense. I felt the possibilities. We could win. We could lose. I could lose. I somehow ended up with the ball. I huddled over the ball and collapsed to the ground wailing, “I quit.” This was only a scrimmage. On the first day of practice. I never went back. I had no heart. 

a brief introduction to rhythm 

a brief introduction to rhythm 

ii. flutter

The first time it happened I dropped everything, including my body, to the floor of the chemistry lab. I had no idea what happened. But the world spun and felt like a Ferris wheel without the music. I had too much heart. It beat hard and fast. When I would stand. Walk. Go up the steps. My parents looked at me with worried eyes. My family has a lot of heart. Grandma and grandpa. Mom and Dad. They all know what it’s like to feel that heart in those ways where your eyes widen and tear with ache.

I began seeing a cardiologist. He was the first person to feel my boobs. I remember thinking that youth group lied to me — it wasn’t my husband. And none of my friends understood how exposed and vulnerable my body felt.  How could they? They had just enough heart.

The doctor said I would outgrow it. That age would soften the beat. And in time I wouldn’t notice it so much. My body would learn how to handle this beast of a beater.

What test are you here for today, Miss? 

What test are you here for today, Miss? 

iii. he’s got heart

Our first kiss was to “The Big Lebowski.” I sobbed the next day. I panicked. I realized I liked him. My heart started to flutter. I called my dad. My dad is good at common sense. He told me — go to the ER. Because an erratic, pain-inducing 180 beats per minute lying down is not normal.

I got a ride. I lay in a bed in the ER by myself. Every time he flirted with me over text I saw my heart rhythm skip on the monitor. Stress. Something more. He asked me what I was up to. “Lying around,” I responded. No need to worry him with messy details about arrhythmias and whatnot. He asked if I wanted to hang out. “Erm. Kjashkjg,” I responded or didn’t respond. The truth only yields for so long. He picked me up. And the next morning brought me coffee — because he didn’t know anything about “tachycardia” or “arrhythmias.” And when he kissed me that day, my heart didn’t flutter but settled. Because, damn, he’s got a whole lot of heart. 

The fatigue. 

The fatigue. 

iv. “tachy”

White, red, and pink candies overtake a corner of the Target. As a Kid, mom always told me that red and pink clash—such colors are tacky. But to this day, I enjoy them if only to be contrary. By the end of the month it will all be on sale. You can buy a heart full of chocolate for three dollars and some change.

After spending half a day at the cardiologist, the irony of tacky valentine’s decor and my own tachycardia feel cosmic and comical. He waits in the car for me to grab a few things. We feel like we are losing heart. Losing heart that such events will ever stop defining us. I eat a heart-shaped Reese’s. Somehow it tastes better than the normal shaped Reese’s. It must be because-- it’s got heart. 

Un-Instagrammable

Instagram. I am not immune. Snap that image. Hashtag it. Wait for those "likes" to affirm either photographic ability or witticism. Social media- my personal brand for the world to consume. And that small brand has become intentionally or unintentionally crafted. While not an exclusive rule, I try and keep my medical life out of social media. Keep it vague. Don't freak people out. Don't offend people with the awkward reality of this body. And so my body and my illness has remained largely absent. Small posts with a well modeled mug of tea and the words "sick day" with an appropriate, maybe comical, hashtag. 

How do I explain this body in one image. One image that will be smooshed on your ever revolving feed between a picture of someone's baby and another's leftovers? How do I post about a chronic existence in a medium that content predicates being easily replaceable (not that blogs aren't too different). But for one day. If I was to Instagram my life it might look similar to the following. 

#WaitingRoom where motivational pictures of cliffs remind you of where you are not. 

I once made a calculation. If I took a selfie for every doctor appointment I have had since all this began in high school and printed them, and then stacked these photos they would reach the top of a 2 story house. #theselfielife 

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"Take everything off to your waist." She instructed. The nurse then proceeded to aggressively cover my body in magical stickers that told them what I already knew- my heart beats to a different drum. #melodramaticEKGs 

An apple a day keeps the doctor away? 

The yearly eye exam to ensure my medications do not cause visual impairment. #SideEffects

#Fridaycocktails - these mysteries that are the miracles of medicine

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Emergency Rooms. Morphine. And the love of a good man.

#Myfirsttime - it took me an hour. I couldn't press it in. But the doctor said this will help my body feel like it was 25 again. 

Fatigue. That nebulous bastard. The medication causes it. My symptoms bring it on. My daily life flairs it. And so I am always pleased when I make it 7pm and feel no quilt in going to bed. 

I took the bus to the ER. Because nothing says denial like taking a bus to the ER. 

When the male physician tells me that I need a therapist-- because internal bleeding can be made up.