ABOUT BLOODY TIME | Sophia Kartsonis

I’m trying to remember a time when we didn’t live by numbers. 

Surely those first two years when the entire row of forsythia bushes bloomed all together in the front yard, so to drive by was to see a cavalry of yellow blossoms so yellow, they nearly left an afterburn against the retina.

Sitting on the front steps of the first home either of us ever owned, a wedding in the distance, I was overcome with joy. The yellow army before me, the temperature of the day, the funky little home, all bound up in what felt like a clutch of gratitude in my gut. How did I get this life? 

Unlike the forsythia, I bloomed if not, late, erratically. Or maybe I just mean love did. After years of the uncertain geography that comes with pursuing an education, at 43, I craved a settled-down life. Nothing really prepared me for what my blood did when I met The Bookboy, as I nicknamed him, with his wild tumbleweed of silvering hair, green eyes and a slight shyness at odds (in the best way) with his good looks and amazing mind. 

We met at a little coffeeshop at the end of my block in a neighborhood called Victorian Village. Each of us recalls the other as standing near the magazines. Something across-the-room-cinematic. At some point he mentioned a book he was reading about the Fitzgeralds, having no idea that I was crazy about Zelda. Without thought, I blurted out “Pinch me, I’m dreaming.” He laughed and asked me to dinner. That first evening, on my walk back to my apartment, I passed as I did every day, the strange, old building with a vintage font of a sign that read International Brotherhood of Electrical Workers—even that felt crackling with fate.

A cardio-jolt, but also the quiet warmth that bathes the veins on a fall night when for a moment, life feels both secure and serene. 

It was late autumn, after all, my favorite season, we were flush with the opening moves of what was clearly about to be named as love—a love that would grow as strong as his health has been weak. 

But we wouldn’t know that then. The poor health, I mean. You could not, as they say, have seen it from there. Nine years my senior and in great shape, he biked, hiked, held a demanding tech job, and kept up with the endless energy of his step-granddaughter. Quick to laugh and not only funny, but genuinely invested in humor. He loved poetry. Bonus: He’d rescued from euthanasia his ex’s dyspeptic old cat, Zoe. A beauty of a creature who suffered no fools and had attacked him to the point of serious bleeding at least once. I saw this as a sign of loyalty and resilience. (Not so much the cat.) 

My own senior cat Bronte was seventeen, frail and failing quickly. I have early memories of us hanging out with her on my bathroom floor for hours before that final appointment to the veterinarian to say goodbye. 

Bronte grew up with me, traveling from my first undergraduate apartment in Utah to my Masters program in Alabama, on to my doctoral in Cincinnati and finally to my first full-time professorial gig in Columbus. Letting her go was monumentally difficult and significant. Not something I planned to share with a brand-new other person. It might not have been my most romantic opening move, but it was telling. A couple of years later would find us lavishing the ill-tempered but beloved 19-year-old Zoe with final squirts of whipped cream as time (and the dreaded pink syringe) took that final toll. As a couple we were new and I saw this time together with our dead and dying granny cats not as morbid, but as testament to our ability to face older life challenges: illness and death. 

I had no idea how quickly we would test this. 

Within a few months, my parents flew in from Utah to see us in the new house and feed us lavishly. Dinner the night before glistened in memory. Even though the olive oil shipped straight in from Crete had suffered some casualties that made a mess of the post office, the dark richness made it to them in Utah and then to us here in Ohio. Whatever USPS & TSA made of my father’s contraband has never dissuaded him in the least.

My folks adore Bookboy and believed that my chef father’s Greek cooking, my mother’s baklava and most of all the oil would grease the wheels—so to speak—for the long-awaited son-in-law. 

But they also believed that good olive oil could heal whatever ailed you, whether on food or in a shot glass before bed, the small plastic pouch containing a single greenish gold cotton ball sent all the way from Mount Athos monastery and blessed by monks. They believed even in cupping. Circular pieces of fabric were cut from an old torn t-shirt and bound around a fifty-cent piece if one was handy (otherwise quarters would do). They then dipped the edges of the material into the oil, and lit the top, placing it on a sick person’s back, then flipped an empty water glass over the little fire which forced the skin to swell up swiftly into the glass like a hot-air balloon of flesh. 

Fortunately, my husband has neither experienced nor witnessed cupping. I cannot say the same. When I was four, my febrile father laid belly-down on our living room floor. My mother prepared coins, fabric and oil and then performed the ritual. I have memories of the flesh sucking into the glass with a sound that may or may not have been. At the end of the session, a pattern of angry perfect circles lingered over his back like some sort of gruesome wedding ring quilt. 

Bookboy worked from home back then. That morning, we ate breakfast with my parents before he went up to work on his laptop. About an hour later, I walked upstairs to ask if he needed anything and he was face down on the keyboard. 

A whisper-argument ensued. I won and got him into the car and to urgent care. His labs showed a creatinine level of 8.1. What he insisted was the flu, was actually Stage 4 kidney failure, a true emergency that has never lifted. 

Which brings us back to the forsythia. There I sat, eyeball-deep in bliss when one incandescent moment turned into a crappy afternoon and the beginning of the abecedarium of diagnoses. 

CKD caused by sarcoidosis. A big blast of prednisone to try to knock back the sarcoid-invited-osteoporosis. Later, we’d deal with aortic aneurysms, idiopathic seizures, a side of some TIAs, followed by a cerebellar stroke. Did I mention the nerve disorder Charcot-Marie-Tooth? Sadly, this list is not exhaustive.  

The kind of sick where friends and family ask in that one voice "How is he?" every time we speak. He has magnificent veins that make phlebotomists swoon, but that doesn’t prevent the helplessness of watching the third time in one visit where someone blows one trying to insert a port. Or when he receives transfusions and notices a giant bubble rising under the skin. An occlusion, we’re told, where blood gathers under the skin instead of following the neat little highway of vein. For weeks after, the bubble will morph into a forearm painted in a night-plum rage of bruise. 

Then I see a post he made on social media featuring two cartoon melons where he’s written: I am sad for my wife because she loves watermelons and the season is coming to an end.

 ***

Sometimes I think back to those early days. How daunting to be walked over to the dialysis area, watch the videos in preparation for a possible pre-emptive transplant. His creatinine levels once they were stabilized have held him just above the need for either, but always in discussion with doctors about the likelihood.

Bloodwork and more bloodwork. Ultrasound, CT scans, MRIs, x-rays, more tests, strange tests, genetic tests, more diagnoses. 

By the time we’ve reached this new game called Beg for Blood, TLGL has rolled in as a third on the Unruly Blood Disorders party bus. “Welcome” says Factor V Leiden. Soon antiphospholipid syndrome (APS) offers everyone a drink. Something thick and potent. 

But blood never lies, does it?  

Several years ago, I found these lines and scribbled them in a greeting card to congratulate a friend on learning to draw blood. 

Sixteen years later and we’re pondering a proper collective noun for hematologists. 

A rouleaux? A thrombi?

We have met with four. Fired one. Reluctantly moved on from another. Drove three hours to see a specialist in L-TLGL or low t-cell large granular lymphocytic leukemia. That last word lands hard. Now, as with most things, we say it out loud like it’s a normal word for a Wednesday. 

We don’t know whether to expect the transfusion this week or next, but we know it’s inevitable, since like so much that was once unthinkable, it’s now routine.

I say we, but I mean Bookboy. 

When the adjective for how he feels is scoured, he sends a note to Dr. M and we wait for the questions:

“Are you experiencing chest pain? Shortness of breath?” No and no.

“Are you feeling fatigued?” Hell, yes. Tell them if fatigue were a country, you’d be prime minister, tell them…

But my husband, ever-measured, says it’s bad, but not the worst yet. Since his hemoglobin have been as low as 6, I’m not sure the worst should be our level-check. 

There’s a thin line between advocate and bossy, so I hang back. 

As he wraps up the call, I hear the nurse say that if anything worsens to head to emergency. 

Translation: Yes, we have no transfusion today. 

Three days, and a whole lot of lethargy later, we get a call from Dr. M and we’re off to get 1 unit of blood. Or rather, get typed, which means not only make sure to verify his blood type: A-Negative, but check to see if there are any issues with antigens, or any new reason he might reject this most recent stranger’s blood. The threshold for two units was to be anything under 7.5 RBG but due to a blood shortage, he only got one unit on Saturday. Normally, that would hold at least a week and a half, sometimes more, but starting off at only 6.5, we're back on Wednesday for another unit.

It’s about time, one of us says. 

About bloody time, the other replies.  

Though he really needs more, we’re happy to get anything at this point. Funny, how you begin to sympathize with vampires when you love someone struggling with a blood disorder.  

At the first transfusion we were told if a bad reaction to the blood were to occur, it generally happens within the first fifteen minutes. I bring a book which I never open and as they hook him up to a plastic rectangular bag of their deepest red, we chatter nervously, pretending that I am not watching for trouble. 

After the nurse comes in to indicate we’re at minute 16, I relax, looking up at the wondrous bag, marveling at how rich a shade of red can be and mouthing a silent thank you to whomever donated. 

This is a juicy bag, says the nurse and confesses that any one pouch can be a little more generous than another. Some hold just a little bit more, she tells us. I know you were hoping for two, so I asked them to send up the beefiest bag they had.

Maybe tomorrow I’ll have more energy, he says. 

Or tonight you’ll be able to get to sleep. I reply. 

Blood carries so many secrets one can only hear its murmurs in our arteries, its incessant monologue, in the quiet night's bed just before sleep.

Late at night, he asks: Can we put on the TV for a bit?

You’re hearing it? I ask.

Yeah.

Shoot. I say. 

No, Schoom, he replies, smiling. 

Schoom-schoom is part of our new blood language. “The schoom-schoom” is our name for the noise that fills his ears with the sound of what he imagines to be his pulse struggling with the dearth of red blood cells. For him, it represents the very bad music of anemia. For me, more that I can’t fix. 

We turn on a murder show to help calm us and somehow, while people tramp through woods looking for remains, we fall asleep.

I say we but I mean we. Not because I believe suffering is a contest or that I suffer as he does. 

But when you’re a caregiver, a driver, a bestie, a wife, your days are directed by the symptoms and treatments, the numbers, the trips to and from the numerous specialists, pharmacies, and clinics. 

I say you, but I mean us, the collective who smile sadly, the smile reserved for hospital elevators, those unique birdhouses that rise and fall all day long. 

Like the numbers that tell the body’s truths, like the chest as it fills with each breath and releases, like hope itself.

***

Today is an easy day. One medical appointment and we’re running early. Ten minutes from the hospital, I spy a food truck in a gas station parking lot. Middle Eastern spices color the dingy air as we unwrap our food and eat in the car. 

We are parked across from an old cemetery, headstones nearly illegible in their weathering. The kind of graveyard we used to seek out in our early days when we could both wander the rows for hours then call each other over to share the most interesting of them. Taphophiles, we called ourselves. 

The cloud-to-sky ratio has completely reversed from that long-ago day festooned in forsythia when the blue was the most of it, and clouds hung full and white, scattered against so much promising cerulean. Today, the clouds are covering a sky that looks to be peering in through portholes. Clouds that are not fully white, but stained a little with a gray that wants for rain. Like flesh on the arm of someone on blood-thinners. 

My husband worries his illness has saturated my life with despair, but he’s wrong, I still feel so lucky.

So, the sky is bruised a little, and maybe some other time, the metaphor might have differed. 

I might have compared the canopy above us to gemstones or perhaps, to the exact color of ocean we’ve pictured on some vacation we were well enough to take.

What hangs over us might be more troubled, with clouds a bit more threatening, but I tell Bookboy, we’re still under it together, so it’s no less beautiful. 

Sophia Kartsonis is the author of Intaglio, winner of the 2006 Wick Poetry Prize, and The Rub, recipient of the Elixir Press Editor's Award. Her poetry, stories and essays have appeared in The Southern Review, Glimmer Train and Bellevue Literary Review. Kartsonis, who is professor emeritus of Columbus College of Art & Design, is enrolled in the Columbia Narrative Medicine program.

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