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 holidays 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 vulnerable and increases the likelihood of suffering longer and more severe crises.
And it dramatically complicates the logistical process of accessing emergency medical care.
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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, 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
seasonal depression and anxiety by telling myself the holidays should feel and mean less special as we get older.
And, considering my experiences, my fears of, an untimely and disruptive SCD crisis were warranted.
But with the assistance of a trained professional, I finally acknowledged the emotions I was experiencing.
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I also learned how to discuss, unpack and come to terms with my past traumatic experiences and fears. I was taught how to process and understand these emotions and experiences differently.
As a result, I began to understand the importance of each experience and accept the reality of how the weight and impact of these experiences can change over time.
And I began to appreciate the gift of each experience as a gift despite its outcome.
I’ve learned love lost is still love experienced, and the voice, lessons and influence of lost loved ones remain in our hearts and minds forever.
And most importantly, I learned how to manage my mental, spiritual and emotional health, and that has prepared and empowered me to face any unpredictable SCD crisis that I may experience.
