I ran across the word “ataraxia” a while back and I liked it. Not only for the way it rolls across the tongue (at-uh-RAK-see-uh), sounding like so many things: an exotic city on a distant continent, a make-believe world conjured by a child, a potent drink that promises to liberate the soul.
No, I also liked it because of its meaning, from the Greek ataraktos, or “not disturbed”: A state of freedom from disturbance of mind. Calmness untroubled by mental or emotional disquiet
Faced with the ever-shifting challenges of the “new normal” that is life with chronic lymphocytic leukemia, ataraxia is something that we patients and caregivers often find lacking in our lives. We crave calmness of mind. Every bad test result or new symptom is a reminder of just how far we can find ourselves from peace and serenity.
It is therefore no surprise that ataraxia is hard to come by in CLL, as the Mayo Clinic has officially found -- I do believe this disease would present something of a challenge to the coping skills of the Dalai Lama. But nothing is impossible, and I sometimes find vignettes, little triumphs of the spirit that show ataraxia is possible in the face of adversity:
A caregiver, whose husband is in ill health and responding poorly to chemotherapy, wakes up to find that her cow broke through a fence and ate her carefully-tended garden. After she cries her eyes out, she and her daughter go out and buy new plants and, together, start all over again. In replanting, she finds strength.
A patient, who has bad prognostics and is undergoing tough chemotherapy, feels like crap. But he loves to cook, and he cooks a dinner for his wife and their two closest friends. At the end of the night they shoot off fireworks.
A man in his 50s, having fought aggressive CLL with aggressive therapy, including a failed stem cell transplant, rides out into the desert on his motorcycle and plays his guitar, composing songs amid the windswept rocks.
A young mother, whose disease has transformed to something worse after chemotherapy, is in hospice care at home. She is in pain, lymph nodes are pressing on her, but her husband buys her a new coat and the two of them and their three-year-old daughter go to the beach and play in the sand and the waves.
There are more stories like these. I like to keep them in mind. Those of us touched by CLL quickly learn that life is fragile, but these stories also tell me that the will to live is strong and that we are resilient. That at times, even in the worst of times, we can reach ataraxia.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
1 week ago