RYR1 encodes the ryanodine receptor—a calcium channel found in skeletal muscles which opens in response to sarcolemma depolarization allowing calcium to move from the sarcoplasmic reticulum into the cytoplasm. Those with RYR1 mutations experience central core disease—a congenital myopathy characterized by profound muscular flaccidity. To a young medical student, this phenomenon is ‘interesting,’ a label reserved for the few and far between cases in medicine when a clear cellular mechanism produced intuitive effects phenotypically. However, no amount of intellectualization can prepare medical students for the sight of a four-year-old intubated girl sitting completely still in her room—the only movement coming from her eyes as she tracks the new presence in her space. Students may find this sight so uncanny that they quickly scan the patient’s medications to check for paralytics, already forgetting what they’ve just looked up regarding the effects of RYR1 mutations.
Students are encouraged to push this unease aside and proceed with their duties, checking with the mother for overnight updates and performing a physical exam. They diligently collect data points for the all-important presentation: one of the many metrics by which students are measured.
My little sister spins around the room in her cracked, calloused bare feet, gloriously fanning out her wild, endlessly flowing curly hair – the envy of virtually all the many young women we’ve had work in our home to help care for her. Nobody dances like Bianca. Now into her 30s, Bianca still needs help going to the bathroom and cleaning herself. Bianca cannot talk, other than rudimentary “ma’s” and “ta’s” if she wants something like a car ride or a piece of candy. She may scream or cry at any time, anywhere between a disconcerting slow boil or a flat-out tantrum, or bang her hands on the table and exhibit other such self-injuring behavior without warning. Bianca has no concept of social norms – of danger when crossing a street, of knowing when to be quiet and be calm in public, of suppressing her inner urge to pinch us or lash out at us when she feels frustrated. Bianca has no hope of independence, not even close. She will need someone taking care of her 24/7 for the rest of her life. I grew up in a household that spoiled Bianca rotten, that revolved around giving her the most stable environment possible, of putting a numbing bandaid on that down-the-road, bleeding fear our family has always had of what would happen to her when my parents were gone.
The blizzard smothered the squeaky old subway as it slowly pressed toward the station. Nighttime had arrived, and the darkness was brightened only by a bit of shimmer from the ice and snow that stubbornly prevailed against any shovel. I rested against my cold, hardened seat, ready to enter this frosty wonderland with a new sense of excitement; I was going somewhere new. Comfortable in my alone-ness, I was quickly awakened from this slumber as I exited the station. I was lost in the city with every street sign covered in a white blanket that chilled me to my core.
Not long later, a shadow made itself out to be a friendly face, a fellow lost traveler. “Where’s the door?!” she shouted, her voice rising above the gusts. Traversing together, we found not only the door but also a piping hot pizza waiting for us inside; we had finally arrived. Thawed by the pepperoni and the conversations of those around me, I warmed up to folks who would become close friends—the kind that have you over for dinner and make their home your home—and experienced the deepest joy as I opened my life up to these new people.
I love theater. I participated in my high school’s drama club, and each year I go see a few plays and musicals in KC. There is something magical that happens on stage—human ingenuity creates dazzling sets, talented actors and actresses draw me into their worlds with wonderful performances, and beautiful music ferries me through the show. And when I was asked to come back to my high school to teach the tech crew how to operate the sound and light boards, of course I had to help.
Returning to theater gives me a chance to reflect on what lessons and parallels I can draw. Most salient to me is the process by which characters are made legible (made comprehensible) on stage, and how I make myself legible to others by playing a script that others can understand based on notions of familiarity and acceptability. For example, in the case of many members of my former high school’s drama club, they must make themselves and their lives legible in a limited range of forms to access scholarships and better education on their college essays. I play the part of a medical student; therefore, I must play it adequately by exuding confidence and competence. If I were to falter at playing this part, I would expect some derision from my peers based on previous experiences of failing at playing my roles appropriately.
I started doing paper quilling a couple of years ago. Quilling uses rolled, thin strips of paper to make 2D or 3D art. I really enjoy making miniature designs and 3D figurines and objects. In this picture, the fairies, table, teapot, and teacups are all made solely of paper and glue. For scale, the teacups are less than 4mm tall.
I enjoyed fashion and accessorizing from a young age. As my baby became more curious and dextrous, he began to pull and chew my necklaces. I was worried about his safety, as well as potential damage to my necklaces, but was sad at the prospect of no longer being able to wear one. I combed Etsy looking for baby and toddler-friendly necklaces and couldn’t find anything that I felt fit my style and didn’t look cheesy. I found a company that sells nontoxic silicone beads designed for chewing, and started designing my own kiddo-friendly necklaces, also known as “chewelry.” I started just making pieces for myself, then friends, then started a small shop on Etsy, ChewtiqueUnique. You can also follow ChewtiqueUnique on Instagram to see a variety of the designs I have made.
Soon, our northern hemisphere will enter into Winter. The sun sets earlier and its warmth fades, sending trees, bears, and countless others into hibernation. In doing so, these creatures can recover from a year’s worth of wear and tear and rest in anticipation of Spring’s growth. As we too retreat indoors, we are also given a chance to look inward; an opportunity to reevaluate our relationship with others, with nature, and with ourself. Winter provides space to think about what has been left behind and what lays ahead. It gives us a chance to be more intentional about those we spend time with, and to witness those who choose to spend their time with us. Though this season may evoke feelings of loss and isolation, it is time spent alone which allows for reflection and growth. As we approach our annual chrysalis, may we put in the work necessary to emerge reborn.
Taken at Loose Park, Kansas City. To me, this photograph represents a scene of pure serenity. I am particularly drawn to capturing scenes that place people in harmony and at ease with their surroundings, whether that be in nature or in the urban core of the city. I very much enjoy using film to instill an almost meditative, intentional focus to my photography. I use it to achieve a dream-like quality, like that of recalling a fond memory. I made this photograph using Fuji Superia 400 film, metered at 200 ISO, though my trusty Konica Hexar AF with 35 mm f/2 lens.
I started gardening a couple years ago after I decided to finally pursue my dream of having a rose garden. The rose garden is still in progress, but I have had so much fun along the way. This year, I started taking photos of the flowers that I grew. It was a productive year; I had so many beautiful Zéphirine Drouhin rose blooms that I made delicious rose jam for my family! My Stargazer Lilies made a stunning and fragrant centerpiece on the coffee table. Some of my Zinnia seedlings died from the heat wave, some were eaten by bunnies, but the ones that survived had bright, vibrant colors. I bought a new bare-root climbing rose in the spring, and I was pleasantly surprised to see it bloom this year, its first year, which can be uncommon. I also saw a hummingbird drink out of my Petunia basket on multiple occasions. I have never seen one in real life and I could not contain my excitement! Other beautiful creatures that I got to see were different types of birds, a hummingbird hawk moth, and a neon-green praying mantis that lived on my Perfume Delight rose. Overall, it was a joyful experience and I am super excited for the next season. But for now, I am busy collecting the fallen autumn leaves to make food for next year’s flowers.
It’s Christmas morning. Her eyes flash open, a result of adrenaline from what’s downstairs. Not the presents or the smell of pine and peppermint, but the screaming. She hears Annie yelling and instantly knows what’s happening. She listens for a while, processing. She knows the cycle is starting again. Being the most observant of the family, she expected this was coming soon. She saw his pupils, the way his hunch was worsening, and even the rattle of the pill bottle in his pocket that she knew he stuffed with toilet paper or cotton balls.