Vol 79: My cross to bear
Mirrors are a tool of visual self-reference extensively used and universally trusted, so much so that the expression ‘mirrors don’t lie’ has become near commonplace. But a strange thing happens as we age. We can find ourselves looking straight at the reflection in the mirror and momentarily ignoring skin tone and hair texture, gazing into our past and seeing instead remnants of the child that once was.
My patient, hereafter referred to as Aaliyah, previously looked in a mirror and saw a truly happy child, never sick, laughing and playing with her brother and sister on the island of Abaco. Today she’s 23 years old and when she looks in a mirror, that cherished reflection of a joyous, stress-free child is long gone.
Eight years ago, Aaliyah began developing rashes on her arms and legs that gradually spread, eventually sparing no part of her body or face. The shocking change in appearance paralyzed her every time she looked in a mirror. Adding insult to injury, the rash was incredibly itchy and when coupled with other symptoms like extreme tiredness, fever, chest pain and headaches, it made life almost unbearable. After a week, her symptoms progressed. Aaliyah began experiencing pain and stiffness in all her joints and she was taken to a local physician.
Initially, her mother assumed the rash was caused by sea lice (jellyfish larvae) which are so tiny, they can rarely be spotted while swimming in the warm and clear turquoise ocean during the summer. To their surprise, the doctor diagnosed Aaliyah with early onset arthritis and referred her to a rheumatologist in Nassau for treatment. Somewhat bewildered, they took his advice and met with the rheumatologist at his earliest available appointment, less than a week later. Blood was drawn and after a thorough examination, Aaliyah was diagnosed with Lupus. The news sent shock waves through her mother as Aaliyah turned to her to understand what was said and how to react.
The next few days were blurred by the shadow of her overwhelming disbelief. The only thing Aaliyah can remember from that week of her Lupus diagnosis is speaking to her beloved grandmother who hugged her tightly and told her that everyone has a cross to bear. It’s up to her to lift that cross high on her shoulders and walk with faith or let its weight drag her down to the ground. Lifting it will strengthen you, she said, but giving it the power to burden your existence will weaken your mind, your body and your soul. Those words and her grandmother’s loving embrace resonated deeply and with her mother’s unyielding support, that day Aaliyah was determined to push forward.
Systemic Lupus Erythematosus (SLE) is an incurable autoimmune disease where the body’s immune system attacks multiple organs and tissues. It creates a life-threatening inflammatory reaction which left untreated can inflict severe damage on the skin, lungs, heart and kidneys. Lupus is characterized by the distinctive malar face rash that’s shaped like a butterfly incorporating the cheeks, bridge of the nose and forehead. While the cause is still unknown, Lupus affects women nine times more than men and is more prevalent in individuals of African descent. Treatment is aimed at improving symptoms and preventing flares.
Aaliyah travelled back and forth to Nassau every three months to have her medication dosage adjusted. The steroids prescribed to mitigate her inflammation caused weight gain and as a teenage girl, she struggled with the changes to her appearance. Her eyes were puffy and so swollen they constantly ached, forcing her to wear shades while at school. Then, by the time she got to grade 12, her cross became heavier and Aaliyah began having seizures, at one point having five epileptic fits back-to-back. Her medication dosage was quickly adjusted and she was started on anti-seizure medication.
After graduation, Aaliyah was accepted to the University of The Bahamas in its Education program preparing her to qualify for a teaching position upon graduation. But the curriculum was intense and the stress caused flares so severe she had to be hospitalized on four separate occasions. The pain in her joints was crippling. Aaliyah experienced hair loss and a headache so crushing that her head felt like it would explode. The inflammation in her brain was also deeply concerning and doctors suspected that she’d have a stroke at any moment. So, after four months, Aaliyah was forced to leave university and return home.
At home, Aaliyah initially worked on one of the Abaco cays but the heat took a toll and caused her to faint. She was relegated to working an office job performing secretarial duties with constant air-conditioning, shielded from the sun. It’s not the career she envisioned, and she hasn’t given up on her dream of becoming a teacher but, she enjoys her work and finds it fulfilling.
Aaliyah’s message to others facing similar trials is to take your medication on time because when she didn’t, her flares were infinitely worse. She also advocates trying to keep your stress levels in check. She’s in pain everyday but the pendulum swings from nagging to unbearable anytime she gets anxious and upset. She’s learned not to worry about things she can’t change and to focus on the good in every situation, especially those precious moments associated with motherhood.
During her pregnancy, her heart rate dropped precipitously without warning and an emergency C-section was performed when she was 34-weeks along. Following delivery, her son was in acute distress and dangerously close to death’s door. He had to be placed on oxygen for two days and monitored for an additional two weeks before being discharged from the hospital weighing five pounds, eleven ounces. He is four years old now and seeing him smile and hearing him laugh reminds Aaliyah daily that she is blessed and that for every cross, there is a crown.
The significance of seeing one’s own reflection cannot be overstated. The first mirror was constructed over 8,000 years ago in Turkey (at the time referred to as Anatolia) using ground then polished obsidian. This glass, made by rapidly cooled volcanic lava, was challenging to collect so surprisingly, it would take several centuries before polished stone, copper and bronze were the preferred source elements for mirror production. Then in 1835, a German scientist applied a thin layer of metallic silver to one side of a clear pane of glass yielding the reflective mirrors widely used today.
During the medieval period, the use of mirrors fell out of favor because of religious protestations that it was a gateway to hell and a tool used by Satan to spy on humans. In modern times, however, it's hard to imagine any home anywhere bereft of mirror adornment. But what may be the most interesting fact is the sheer volume of differences a mirror can reflect. With a world population of some eight billion people, a single mirror were it able to travel to every person everywhere could reflect eight billion different images with eight billion stories to share.
When Aaliyah looks in a mirror today, she no longer sees the younger stress-free version of self that haunted her for years. Today she sees a mother, a survivor, eyes filled with hope and more often than not, shoulders broad enough to bear the weight of whatever cross she’s forced to carry.
This is The KDK Report.
