BLOODY C’s
Sailing seven C’s, not including Coda.
Sailing seven C’s, not including Coda. C for Child, a hiding, needle-hating, strong-willed me. A small-town doctor house call. he crawls under my parents’ bed and inserts a shot. C for the Cuts to clean. Not yet in first grade. A new adult size Schwinn bike. No training wheels. Kids grow so fast you know. Get on. Get pushed. Let go. A day of disasters mastered. Proud of those scrapes and bloody knees. C for Chin, my sister’s, where the old dentist’s needle poked out through the skin. The same dentist tries me next, After the bite, tells my mother “Never again.” C for Camp and the Curse, my first. The unexpected red. Search cabin counselor’s items. Seize the things with strings. Run to the restroom. Now what? Toilet paper to the rescue. Didn’t tell Mom for months. Why not? C for Cinder track, littered with a skidding hurdler Hurt and humiliated. Looking like a murder scene. No pride that time of new cleats or bloody knees. C for Canoeing. Far into Northern Minnesota’s Boundary Waters. His hand sliced open. Push, pull, paddle through black night miles back. A diving needle like jumping fish pulls together red flesh. Paddle back to rest. C for Childbirth. Historic snowstorm, on nurse phone line all night. 44 hours of labor, six hours of pushing, collapsing the baby’s lung. How I was duped by the natural child birth movement. C for C-section. So, it wasn’t about me. C for Child. Coda C for—Chronic, not the other C word. Call it an overachieving blood disorder. Large-needled phlebotomies, sudsy thick blood fills disposable bottles, like medieval blood-letting, that never lessens the Constant fatigue. Thrilled for the pill that does it all for free with numbers to study me. Call it Polycythemia Vera, the beginnings of Myelofibrosis, a pre-Curser to leukemia. Change this Chronic C to Cure.
PV on TV
I get a kick from doctor shows where a “rare blood cancer” called Polycythemia Vera shows up, and of course, the lead doctor character finally diagnoses it and saves the day. Doc Martin was a fave of ours years ago, and he never missed a diagnosis, even if his bedside manner needed work. PV has also been featured on General Hospital and Grey’s Anatomy.
I’m okay with PV. It’s a chronic cancer which I’ve had for years, and it’s not a life sentence. In fact, sometimes it’s nice to wear a label on those days I don’t do much. We all got our stuff. My numbers are good, there are always new studies and medications, and there’s nothing like having a nudge to focus on what matters, even when the fatigue tries to get in the way.
Karl laughs (thank goodness) when I repeatedly say, “I’m so tired!” There’s surprise in my voice, because it doesn’t seem like I should be tired, and then I laugh, too. Being loved by this sweet guy makes anything bearable. I felt justified when Bart Scott, an oncologist who has worked in this field for almost 30 years, told me he had never met a patient with Polycythemia Vera that didn’t have fatigue. But it wasn’t only about feeling justified. It opened me up to more self-compassion (and other C’s which you’ll see below). Which means I allow myself to focus more on the things I love and want to leave as a legacy. Just don’t ask me to be somewhere in the early morning!
Writing, teaching, talking about creativity, engaging in deep, personal conversations, playing in the arts, supporting creatives of all ages—Mix and match any of them, and I’m game. Without that focus, I can fall into the Fatigue Trap:
FATIGUE Trap
Forlorn
And
Trapped
Into
Grieving
Unavailable
Energy
You don’t need a diagnosis to be energy depleted, or to need more focus. Don’t beat yourself up, and as I often add to that—Don’t beat yourself up for beating yourself up!
Worry and wallowing won’t get any of us anywhere until we make a different C for Choice.
My Choice of C’s are from Internal Family Systems, where the “parts” you hear me talk about have been transformed into an understanding of our inner “selves” and a therapy developed (or you might say discovered) by Dr. Richard Schwartz. These C’s are: Compassion, Creativity, Curiosity, Confidence, Courage, Calm, Connectedness, Clarity. I’m claiming these C’s! We got this. You with me?
I loved this piece. Loved the pace, the way you marched through your history, the background, so we could appreciate the narrative.
As a father of a daughter with a chronic illness, I have a special appreciation for what you wrote. Thank you.
I am so in with you. I need some of those Cs.