In a Dark House
CQ Quintana
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My sister lives in a dark house in a world I don’t understand.
Sisters, sisters, never were there such devoted sisters!1 My wife and her sisters are four in a linked
chain. Their faces like a set of dolls: the judge, the professor, the therapist, the nurse. Collectors’ edition. Of course, it’s never simple. They have their own complications. Even still, when they gather in their parents’ living room for holidays, I feel a pang of jealousy as they sling inside jokes, or even when I catch snippets of their lengthy phone calls.
My own sister and I were once more than two people who shared parents. Five years her junior, my stereotypical older sibling hero worship certainly played its course. She bribed me with bubble gum into toilet training and tutored me in math; for many years, we spoke a comfortable language of Disney one- liners, Weird Al lyrics, and Mel Brooks puns. She – the intellectual, the secret novelist, the video gamer – would disappear to her attic nest, and sometimes she’d let me in. I’d lie on the floor and talk in my own one-sided therapy sessions while she practiced her desktop wizardry.
Today, my sister and her husband live in a sizable house in a neatly planned community. They own four Chihuahuas and – at the slightest movement or sound – they bark like a cascade of dissonant bells. As I enter through their Texas-sized three-car garage — triggering the dogs’ continuous yelps — a vision of heteronormative, suburban existence confronts me. I file past racks of Costco surplus, the gun safe, the oversized washer and dryer units, and into the dim house.
My sister shields herself in darkness because the dark is her best weapon. For nearly a decade, countless doctors could not name her illness, let alone treat it. Her aches and pains metastasized into a prolonged descent. Even now the answers come in limited supply, the pain — including chronic headaches, gastric issues, joint pain — her only constant. Cryoprin-Associated Autoinflammatory Syndromes, or CAPS, is extremely rare, found in between one in 360,000 to 1,000,000 people, and related to a defect in the same protein: cryopyrin2 . The subtype that afflicts her has yet to be formally classified, and as of now, there is no known cure.
Would she attend my wedding? There would need to be a cabana on the beach. Her skin could not have contact with the sun after a horrible reaction at her in-laws’ family reunion months before. Could she attend the reception indoors? Would there be music? Would it be loud? It would all be too much. The travel alone.
//
“If y’all didn’t look alike, I’d have trouble believing you’re sisters.” My best friend since age ten has said time and time again. My sister and I look something like an old school comedy duo. Our faces very similar, bodies distinctly different. She is a few inches taller with dark curly long hair. Her skin, pale like a Spaniard’s, to quote my mother. Mine, always more olive-complected, somewhere in between my mother and father’s tones. Once in high school when my paternal grandmother saw us both for the first time in many years, she looked first to her and then to me:, La gordita y la flaquita, she pronounced as she stepped through the door.
I was the talker, she was the thinker, my parents decided. Sometimes I’d sit in their bedroom, lean against the bathroom door and listen as they spoke about us in a cascade of Spanish and English; their voices echoing as the water rained down around them. There were always plans for her, much more so than for me. She would do great things. She would follow in my father’s footsteps. She would make our family proud. As the children of immigrants, you climb over yourselves endlessly to become the shiniest token on the mantelpiece. Sacrifices have been made for you to have this life, this education, so you’d better make the most of it. The baton is in your hands.
With less expectation, their ideas about my future less rigid, I imagine it was easier for me to slip through the hole in the fence.
For her, however, there were no easy openings.
Her checklist, and its detours:
Step 1: Fulfill role as ideal Cuban-American daughter, i.e. patient, dutiful, studious
[Insert move to New Orleans, i.e. ripped from friends and boyfriend after freshman year.]
Step 2: Ace high school, the Cuban-American way, i.e. exceptionally high GPA and
test scores, limited hanging out and/or ride requests on weekends, long distance
boyfriend.
Step 3: Enroll in local, Catholic university on scholarship with a double major in pre-
med and English, i.e. stay close and become a professional
[Insert college graduation]
Step 3: Enroll in medical school, i.e. please parents, especially by actualizing mom’s
unfulfilled path
[Insert Hurricane Katrina]
Step 4: Meet man during time at satellite campus, elope at 24, ask sister to keep
secret.
[Insert parents figuring it out, i.e. “That’s a nice ring. Wait a minute…”]
[Insert the first substantial symptoms of unknown origin]
Step 5: Drop out of medical school, i.e. the only topic our parents will discuss for years
Step 6: Enroll in classes for American Sign Language (ASL) program at local
community college
[Insert escalated symptoms]
The autoimmune disorder confounded many – or maybe these doctors were too
convinced the condition wasn’t real. Even my parents questioned whether the illness
was, in part, psychosomatic. After all, psychosomatic illnesses produce very real
symptoms.
First there were stomach issues. Reflux. Nausea. Discomfort. A steadily dwindling diet.
Then, there were headaches. Everyday, all the time, constant, pounding, dizzying.
Then, came the doctors—every shape, size, and color. Every town, every specialist, every
combination.
Then, came the medications—the side effects, the nightmares.
Then came more, different, others, again—this and that, that and this, all of the above.
Then, she dropped her classes.
Then, there could be no light.
Then, there could be no career.
Then, there could be no children.
Perhaps, it’s not my story tell.
//
Roughly two years after her departure from medical school, my sister began courses with an interest in pursuing a master’s degree in American Sign Langauge (ASL) interpreting. A new community, a passion, a goal. These were all words I understood. I felt proud, relieved, thrilled to share the news. So, when I received word that she cancelled enrollment for her fall classes, and put her dream on hold, I couldn’t understand. I urged her not to let the sickness stop her. She left medical school for the right reasons, but what about all of that potential? What about her dreams?! As a fledgling playwright in New York, I felt heartbroken – betrayed by her resignation. Here was a woman with an almost perfect score on her ACT, a woman who barely studied for the MCAT and accepted early enrollment into medical school. She had to do something!
I realize now that I had no idea – my insistence callous. Perhaps my parents’ looped conversation on regret somehow leaked into my consciousness. I am not a quitter; I would not give up, so how could she?
At times, I’ve wondered: how bad is her illness? And then, the guilt follows. I have no conception of what it must be like to live in her body. I truly cannot imagine how horrible it must feel to walk away from every single dream you’ve ever worked toward.
//
My sister’s never liked the phone, and barely answers text messages anymore. The brightness of the screen is often too much to bear. In my apartment thousands of miles away, in a life so different than her own — as packed with buildings and train lines as projects and deadlines — it’s easy to forget how we once shared a backseat travelling south to make a new home. How we chuckled at the quirks of Mom’s accent as she negotiated with the locksmith (Carl Jarl, i.e. Carl Yarl) or rolled our eyes at Dad’s latest pronouncement that he quit smoking, for good this time, as he slapped a patch on his shoulder.
She admitted, once, in a necessary logistical call regarding my mother, that she felt like she’s lost the best years of her life. While a heartbreaking confession, that moment was the closest I’d felt to friendship with her in more than a decade. I wanted to urge her to keep going. To tell me what was on her mind. To ask me about my own. I longed for that exchange, the one that would never surface. Mostly our calls – few and far between – lead to dead ends. We’ll see what happens with this medication. It’s been a really bad day. I finally got my shot.
I hope you feel better. I say on repeat. The words are small; they’ll never be enough.
My understanding of video games is limited, but sometimes I imagine she feels like Princess Zelda in her dark house, a maze of right angles among the same harsh music. Come find me. Come help me.
Every time I meet or read about someone with chronic illness, I see if there are pieces of their experiences I can somehow translate or connect to my sister.
One of the spunkiest women in our college cohort, with a boisterous cackling laugh and ever changing bright, self-proclaimed mermaid hair, learned several years ago that she has Addison’s Disease, an uncommon disorder that occurs when the body doesn’t produce enough of certain hormones. The symptoms include extreme fatigue, weight loss, low blood pressure, and abdominal pain, among many unpleasant others. Today she is a self-described wellness warrior, yogi, Reiki practitioner, and craftswoman of second hand materials, but struggles with the daily toll of the disorder, including a steroid-dependency. When I saw her last, she needed a cane to walk—at thirty years old. Even still, she was realistic, but bright. She’s become a fierce advocate for Addison’s and all chronic illness and lives bigger in the face of her own than many I know in “perfect health.” Maybe that’s just her personality; maybe some people are better equipped to deal with these sorts of obstacles.
Not to say that the course has been easy. Everyday is different, every moment is different, she says. When I carefully inquired whether she and her husband, another college friend, had considered children. She said, It’s just not in the cards. It would be like signing our kid up for a single parent. Plus, the chances are high that I’d pass this on to our little one. I regretted the question as soon as I’d asked.
– During the research phase on a project on Epilepsy, a woman I interviewed spoke about the terror of recognizing the loss of intelligence due to years and years of intense medication, necessary to prevent convulsive seizures and allow her to function in the world. A business woman living in a beautiful house, she mourned the slow, self-inflicted decay of her mind. How could she stand it?
– Los Angeles poet laureate, Robin Coste Lewis, describes on the podcast Commonplace the inability to write more than one line a day in the face of a traumatic brain injury. Yet, even one line is significant.
– Novelist Roger King suffers from Chronic Fatigue Syndrome (CFS), which translates to large portions of his life transformed by periods of extreme exhaustion. And yet, he’s managed to persist in writing novels — more slowly, less frequently, but surely.
Once I read an article about a homeopathic treatment program that transformed the lives of many chronic pain sufferers who never found the same level of relief via Western medicine, in large part due to the insensitivity of numerous physicians. A goldmine, I thought! Could this program offer some grain of comfort? I carefully – though naively – crafted an email presenting the possibility — even though my mother advised against it. Ultimately, the program did not appeal to my sister, particularly because of the 3-month residency requirement. I found her resistance difficult to grasp. With that level of constant discomfort, wouldn’t you try anything that could possibly help?
According to my friend with Addison’s, friends and family so often recommend treatments plans and possibilities. They mean well, but predictably the conversations are incredibly frustrating – even when the propositions are rare or a first from the recommender.
I learned from my own single suggestion that I should probably mind my own business. What response was I actually hoping to get from her, anyway? Best to stay out of the way. Let her deal with her own illness in her own way.
//
I mourn my big sister. I wish I could have turned to her about job searching, apartment-hunting, graduate school, relationships, or marriage. Many people assume I am the oldest child or an only child. I question whether this is a bad or a good thing. Maybe just a strange thing, the product of avoiding conversation on the topic.
My sister’s husband — a stocky, brick of a man — has become her caretaker, her fiercest defender, at times, her enabler. Together they’ve combatted dozens of skeptical doctors, the prickly side effects of numerous medications in a war without an end in sight. He is her witness, her advocate, her confidante— and there is little room or energy for anyone else. Our own mother lives less than five minutes away and sees her sporadically, only ever in the confines of her dark house.
We learn the most about ourselves in the most difficult moments. I wonder what my sister has learned in all those quiet, uncomfortable spaces of her life. Is helplessness her own assignment?
Like a blanket of storm clouds, in comes the looming specter of depression. My grandmother, father, and sister in a row — a lineage of suffering just out of one another’s reach. Certainly out of mine. My arms long, fingers outstretched, touch nothing. I always want to do, but sometimes there is nothing to be done.
We wait and hope that my sister’s new round of injections will provide some comfort — that maybe there’s a real life to be had on the other side.
What does that life look like? I’m an eternal optimist, but even still, it’s hard to imagine the light at the end of this long tunnel. I can only imagine what it’s like from inside. What if deep within she’s also trying to find me, even though we now speak such different languages. Release expectations, I’ve been told, and so I am – as best as I can.
1From the song “Sisters” in White Christmas
2Information from Rheumatology.org
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CQ Quintana is a New York-based writer with Cuban and Louisiana roots. She is the author of the full-length play Scissoring (Dramatists Play Service) and The Heart Wants, a chapbook of poetry (Finishing Line Press). Her work has appeared in P.S. I Love You, Queen Mob’s Teahouse, PulpMag, and elsewhere. Most recently, she served as staff writer on the new ABC series The Baker and the Beauty. For more, visit cquintana.com
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