Vol 39: Thicker than water
Fear is unpredictable. It can turn the brave into heroes or lay bare previously camouflaged cowardly traits for the world to see. But in our darkest hour and for a small few, the fear of the unknown can manifest courage so great it nearly defies explanation. Those are the stories that make headlines. It can also allow those willing to face the storm directly to channel their adversities with grace.
Two months ago, during a sickle cell crisis, my patient and friend hereafter referred to as Natalie, was transported to the hospital in severe pain. She described it as an intense stabbing everywhere along her body but especially in her chest, stomach, back, arms, legs and feet. The pain was crippling and sometimes lasted for hours to weeks at a time. Each occurrence left her body drained and so weakened that she could barely walk. Some cycles were infinitely more debilitating than others. This crisis was particularly ruthless and one of the most intense she’d ever experienced.
On the way to the hospital, the fear in her eyes was evident but even more palpable was the sense of fatigue. Natalie, from the age of two, suffered from Sickle Cell Anemia and for over 46 years had gone into crisis more than a hundred times. She was physically and mentally exhausted. The heavy toll that this disease had inflicted on her now frail body was blatantly obvious and even the most obtuse onlooker could appreciate her profound suffering.
Sickle cell anemia is an inherited blood disorder where the hemoglobin protein within red blood cells has mutated from round to a more crescent moon shape. Given this structural abnormality, the red blood cells are no longer able to transport oxygen throughout the body efficiently. They become stiff, and sticky. This impedes blood flow resulting in pain, shortness of breath and other serious health complications like chronic bacterial infections and stroke.
Currently there is no cure available and patients with this condition with early detection and treatment typically have a life expectancy into their 50s and in very rare cases, into their early 60s. Unfortunately, medications available locally to help reduce symptoms amount to almost $700 per month. Natalie often voiced concern over the fact that this is far too cost prohibitive for the average Bahamian afflicted with this disease since very few insurance policies will cover patients with Sickle Cell Anemia.
Given her own personal experience, Natalie became a physician and a champion for the local sickle cell community. Her practice focused on pain management and wellness in an effort to limit her own pain and to help treat others throughout The Bahamian archipelago.
But as her disease progressed, there was very little that she could do to blunt her pain cycles. While seeking treatment at the hospital for her flare-ups, she became friendly with the doctors and nurses on staff. As such, she was immediately transported to the trauma unit upon arrival and quickly assessed. Routine testing quickly revealed the extensive damage inflicted over the years to her lungs, kidney and liver. So much so that her organs had slowly begun to fail.
In all of our interactions, Natalie remained hopeful that she could prolong her life as much as possible through a healthy diet and the use of high standard supplements that she personally researched and endorsed. Her advice has prolonged the life of many of her patients and saved countless others. Despite this, she remained humble and always found something to laugh about even while recovering from the worst of her episodes. That in and of itself required a remarkable inner strength, something that Natalie had in spades.
On the evening that she was admitted to the hospital, Natalie waved goodbye to her family as the medical team prepared her for transport from the trauma unit in accident and emergency to her room. They left confident that she’d return home like she had so many times before. Tragically, this would not be the same as before. Within a few hours, Natalie’s organs failed and despite doctors’ and nurses’ best efforts, they could not save her.
As Natalie was pronounced dead, the white sheet used only moments prior to provide warmth was used to cover her face. Every medical personnel in the room at that time felt the loss deeply. They were there for every crises and gave a high-five, cheered loudly and applauded whenever she recovered. But today there would be no transient outbursts of support. Today, the room was quiet.
No one felt this loss more deeply than her parents. They were incredibly close to their daughter and spoke to her almost every day from the day she was born to the final time when she was admitted to the hospital. Both carriers of the sickle cell trait, there was an underlying guilt that they both felt from unknowingly passing this disease to their daughter. While they felt guilty, Natalie, had always felt overwhelmed with gratitude to be blessed with two incredibly loving parents, a sister she adored and a grandmother whom she absolutely cherished.
Well known Grammy-award winning singer Tionne Watkins from the popular 90s RnB group TLC, was diagnosed with Sickle Cell Anemia as a child. Now that she’s in her 50s, she credits her mother with helping her to come to terms with her disease and to rise above the limitations that it often imposes. No single medication works well for everyone but over the years, the superstar has found what works best for her in reducing the frequency and severity of her symptoms.
She continues to tour with a massage therapist and regularly takes Cannabidiol (derived from the Cannabis/ Marijuana plant) to respectively reduce her symptoms and boost her immune system. As the current government makes strides towards legalizing medical marijuana in The Bahamas, many patients in the Sickle Cell community, with and without insurance, rejoice that an affordable treatment option may soon become available.
There comes a point when the acceptance of one’s circumstance overrides fear. At that point, with no further hindrance, an overwhelming sense of peace fills the space where fear once ruled. I choose to believe that in her final moments, and after years of valiantly fighting an unconquerable disease, Natalie was granted this divine peace.
May we all take a moment to appreciate the lives of countless unrewarded warriors lost to Sickle Cell Anemia. And as we mourn the lives that could have been, may we also celebrate the beautiful time that they were here, the joy that they spread and the infinite contributions that they collectively made to the world that we each inhabit.
This is The KDK Report.
