Vol 108: The chance to play
According to millions of players across the globe, the game of chess is analogous to life itself. From the shadows, anyone can emerge victorious if able to employ enough cunning and wit and stay two-steps ahead of their opponent. Every move has a consequence and even during times of setback, the game continues. But, if given the chance to play, one soon realizes that strategic planning and foresight does not always guarantee success.
On October 17, 1956, at the Rosenwald Memorial Tournament, Donald Byrne and Bobby Fischer had what was hailed as the ‘game of the century’ and it has been written and talked about in every chess club around the world ever since. During the game, Bobby sacrificed his queen, a move unheard of prior to this, which led to a series of unrelenting attacks and assured his victory at age 13. He scored this unimaginable feat against his opponent, who was 26 years old and easily considered one of the top ten chess plays in the US at the time.
Following their match, Bobby went on to become a grandmaster and the eleventh World Chess Champion while Donald held the title of international master until he died in 1976 at age 45 of complications arising from Lupus. He was inducted into the United States Chess Hall of Fame in 2003, 17 years after Bobby was inducted.
Donald, like my patient Susan (an alias), was diagnosed with Lupus unexpectedly. Susan is well aware that patients with this inflammatory disease face never-ending health challenges. So, with no available cure, the chance to play with her grandkids for as long as possible is her unyielding prayer.
Lupus is an autoimmune disease where the immune system attacks the organs and tissues and, in doing so, creates an intense inflammatory response. Symptoms mimic various other ailments so diagnosis can be challenging for health care providers. As a child Susan was constantly sick. She broke out in intense rashes all over her swollen body and each time she was treated for allergies. During a particularly bad flare, she recalls her mother wrapping her entire body with gauze to mask her rashes so that she wouldn’t be teased but it had the inverse effect. Her symptoms persisted off and on into adulthood but were exacerbated after she became pregnant with her first and only child.
Susan constantly felt weak and tired, she easily became short of breath, her joints were stiff and swollen and her typical rashes intensified into painful lesions. She was tested for Lupus but the test came back negative. The intensity of her flare-ups subsided temporarily after she gave birth to her son. Unfortunately, her reprieve was short-lived. Her mother’s death in 2007 from colon cancer which metastasized to her liver, lungs and brain was soul-shattering and the devastation was so deleterious to her health that Susan suffered her most life-threatening flare to date.
She lost weight, had extensive and intractable mouth sores and she began to exhibit a rash on her face which she covered with makeup. Beyond that, her pain was so mind-numbingly intense that she could barely walk. Her body was tired all the time and felt like it was on fire whenever clothing or sheets touched her skin. Lying in her tub immersed in cool water brought some degree of comfort but, once in, she couldn’t physically get out and knows intrinsically how goldfish stuck in small fishbowls must feel.
It wasn’t until New Years Day, 2011, when she would finally get closer to the answers that had eluded her for a lifetime. She woke up and her entire left body was paralyzed. Susan quickly ruled out a stroke because she didn’t have a facial droop and even though she couldn’t move that side of her body, pain still coursed through it unabated. Her concomitant chest pain made her think she might be having a heart attack.
She immediately saw her primary doctor and was referred to a bone specialist for spinal arthritis who then referred her to a neurosurgeon. The neurosurgeon told her that she had a herniated disc in her neck and recommended surgical intervention. When she realized the herniation didn’t explain her extreme fatigue and rashes, she opted to return to her primary doctor. With each referral she was started on a cocktail of medications with no alleviation of her symptoms.
Several months into the new year she returned to her primary doctor but because her body was so weak and sore, she couldn’t muster the energy required to apply make-up. That decision proved to be life-altering because seeing her facial rash immediately prompted her doctor to order another Lupus test (her third) and this time it was positive. The news, which came over a decade from she initially sought help, was bitter-sweet. All ramifications aside, for so long with no medical explanation to explain her symptoms, she was told that her issues were mental and it was a relief to have a definitive reason for the pain she had endured.
Before she had time to process her new reality, she was walking into work and was robbed at gunpoint by two masked assailants. They stole her car, laptop and purse and Susan was left shaken. The assailants were eventually caught but it was a stark reminder that her life could end at any given moment. So, like Donald, she began to appreciate how to see the full picture and began living each day as if it were her last. Susan wrote her obituary 10 years ago and has already selected the order of service and pictures that she wants to be used therein.
It took almost a year following her diagnosis for her to find the right medication and dosing to effectively subdue her pain. And though the palliative effects are fleeting, Susan remains grateful. Today, she never makes any promises because she doesn’t know if she’ll be alive to see those promises through to fruition. What Susan wants other people to know is that the skin lesions associated with Lupus are not contagious. People going through the flares are already in pain and that pain is worsened when they look in the mirror and their reflection is riddled with lesions. Their depression is then magnified when people make derogatory comments or look at them with disgust. She stresses the importance of compassion and empathy.
Susan also says that Lupus has taught her how unbelievably strong she is because for so long she prayed to die when the pain was at its worse but she kept going. She credits her strong Christian faith for getting her through her toughest days and reminds readers to appreciate the small things in life. Always be happy about being alive, she says, because as long as you’re alive, you have a chance to play and a chance for life to get better.
Chess players like Donald say that the game has taught them to always look at the bigger picture and to recognize opportunities as soon as they appear. They learn quickly from their mistakes because the consequences are immediate. They also know that one move can alter their circumstance for better or worse. Susan and many other patients with Lupus have learned to live in the moment and after hearing their stories, I’m praying that others will do the same.
This is The KDK Report.
