Medical PTSD: Nina Simone, You Do Know How I Feel (Part 1)
Nina Simone may or may not have experienced post-traumatic stress disorder (PTSD) in her lifetime and she didn’t write the song “Feeling Good”. Fair enough. It’s a song about emancipation written in 1964 for a stage musical, “The Roar of the Greasepaint, the Smell of the Crowd”. Simone’s version of the song was released in 1965 during the Civil Rights Movement and it’s her recording that speaks to me – a middle-aged white woman. I know, here goes another white person co-opting something that doesn’t belong to them. But, friendly reminder, Michael Bublé recorded the song in 2005 and George Michael in 2016. I don’t think either of them drew upon their oppressive ancestral history when they crooned “it’s a new dawn it’s a new day, it’s a new life for me”. Adam Lambert performed the song on “American Idol” presumably because he was “feeling good” about his sexuality. So maybe we can agree that as important the song is to racial equality, the lyrics may hold multiple meanings. For me, the song is about medical trauma.
My medical journey, or what my more valiant friend calls a “medical safari”, stems from chronic lymphocytic leukemia (CLL) diagnosis. Many of us with CLL are initially told by our doctors that it’s “the good cancer”. At 43, “good cancer” didn’t really resonate with me. It’s called that because it tends to creep up slowly. You just wear this cancer badge until you experience worsening physical symptoms or certain blood count numbers shift in the wrong direction. Then it’s time to treat, another confounding phrase that conjures images of a late-night forbidden dessert, the kind that Dr. Mark Hyman would staunchly prohibit. But, this is no chocolate croissant. Most of the treatment is a deleterious concoction that usually goes by a very long and unpronounceable name, like Obinituzumab, which happens to be what I received after CLL and I rubbed elbows for three years. Yet, for most of that time I courageously sang, ”birds flying high, you know how I feel”.
Through six months of treatment and about five years beyond I still belted out, “breeze driftin’ on by, you know how I feel”. Then a routine colonoscopy just before my 50th birthday choked the song right out of me (in a podcast this is where you would hear the harsh scratch of the record needle). I was still groggy from the anesthetic when the gastroenterologist solemnly informed my husband and me that I had colon cancer and it would require immediate surgery. CLL’ers know that secondary cancers are relatively common but I was pinning my hopes on a little patch of skin cancer after age 70, not something as sinister as this.
After several agonizing days the pathology report came back revealing that it, in fact, wasn’t colon cancer; it wasn’t even CLL, which can sometimes show up in the colon, but it was something more benign called Progressive Transformation of Germ Centers. After hours of Google searching I came to understand what this meant: no one had a clue what was going on in there. That’s a little unsettling for someone like me. If I’m going to have a large portion of my abdominal organs removed, I’d like to be better versed as to the nature of why. It’s then I jumped headfirst into the crevasse of medical PTSD. Truly, it’s a thing.
If you do a little cursory research you’ll find that not a lot has been published on medical PTSD and what has been written leans more toward the anecdotal versus scientific. This is astonishing given the widespread prevalence of the disease. It’s hard to believe many people faced with a life-threatening condition say to themselves “Darn, that’s too bad. What’s on Netflix?” Despite the scarcity of research, there seems to be a growing consensus, that the trauma associated with disease and medical procedures can manifest in ways similar to war and combat. According to the Mayo Clinic, PTSD-related symptoms are grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, and changes in physical and emotional reactions.
Read Part 2 of Medical PTSD: Nina Simone, You Do Know How I Feel.
Have you met another blood cancer patient?