As a sickle cell patient, the typically joyous holiday season can, at times, be mired in the fear of shorter, darker, and colder days.
The frigid temperatures mixed with holiday expectations and the emotional ghosts of lost loves, loved ones and memories of holiday interrupted by illnesses.
Every sickle cell disease (SCD) patient fears the unpredictable crisis and the colder winter temperatures because the colder weather leaves us more venerable and increases the likelihood of suffering longer and more severe crises.
And it dramatically complicates the logistical process of accessing emergency medical care.
It’s a dramatically different process of dressing, driving, parking and walking into a local hospital’s emergency room for immediate care in 70-degree weather than it is in 20-degree weather, not to mention the difficult process of navigating the possibility of rain, ice, sleet and snow.
And, despite the difficult complexity of navigating personal transportation to a local emergency room, it still beats the idea of trusting the staff of an emergency medical tech (EMT) who may have little, if any, knowledge of sickle cell disease.
Also, the emotional ghost of lost loves and loved ones always visit during the holiday season.
I’m not sure if it’s the smells of the season, the ritual of unpacking holiday ornaments, trimming the tree or the familiar music, but the skewed and sometimes unwanted memories flood in without explanation or apology.
And, at times, the good memories left me as devastated as much as the bad memories. And both make it difficult to be present in the many moments of my life which, is in many ways, connects to the definition of depression.
Despite my wife’s love, early, and accurate diagnosis, I, for years, tried to ignore my