Typing and stopping and typing and stopping
Hello.
I keep meaning to write and then the beige butte of hot garbage that is the united states of america fucks with my plans.
Today I talked about the Jan 6 Insurrection with my students. Some of them had no idea how awful it really was and at one point a 12 yo said, “Gruber, want to move to Germany with me?” And I said, “Yes. Yes I do.”
Because what American doesn’t at this point.
Later, at the park, a student approached me to help me with my Spanish, and
I’m proud to report I could understand much of what she said to me and when I tried to reply, en Español, the girl shook her head, put a hand on my arm and said, “Don’t worry, Grubie. You’ll get better.”
This morning, as I got ready for work, I considered the anguish of the past four weeks, the anguish of the past year and some change — the anguish of begging the American Industrial Healthcare Complex for my care (care that I pay for, whether or not I get it, when I pay my health insurance dues), of being terrified by the various High Offices of the American Industrial Healthcare Complex that do not communicate with one another and therefore confuse me and when I am confused about my healthcare, my cancer care, I get frightened and when I get frightened for prolonged periods of time I get angry and when I am angry for prolonged periods of time I get anxious and when I get anxious I get sick and I am tired of being sick.
Like, I have shit to do in this life yet.
I am not ready to live a life devoid of joy, relegated to pill sorters and PET scans and staticy soft jazz (kill me) hold music.
I can’t steer the sea, but I can sure as shit steer my own boat.
I do not wish to spend my lunch hours in the car on the phone with Ye Olde Cancre Centre or Ye Olde Cancre Pharmacy (I’m looking at you, OptumRx) or with the health insurance companies to whom I fork over a chunk of each paycheck I earn in an actual basement in an actual American city in an actual pandemic. I would like to eat lunch during my lunch hour. Perhaps get some air. I don’t want to cry over OptumRx’s refusal to deliver my Ibrance on time because they cannot get their shit together or — rather — they do not care to get their shit together because unless you’re feeding the American Industrial Healthcare Complex salad bowls of cash, no one cares about you. Or you. Or me. This is a matter of integrity. They don’t “have to” (by law, etc) care, so they do not care. Think about all the shit you care about, reader. All the shit you care about that no one asks you to care about or pays you to care about — well, the people running OptumRx do not experience that sensation of “caring about things that do not bring me money.” We can feel sorry for the OptumRx overlords. Or not.
Actually, not. I don’t feel sorry for the bastard CEOs, et al, at OptumRx. This morning, Thursday, I woke up and I said, “Allison” (when it’s serious I call myself by my Christian name). “Allison,” said I. “Let this shit go.”
And in that “let go” I finally accepted that while I can continue, as I’ve been for nearly two years, begging for standard-of-care to treat my stage iv breast cancer (stage v is the “dirt nap” stage), sacrificing lunch for hold music, or I can do what a normal person should do: call to make appointments, show for appointments, swallow pills, reschedule when the “stars do not align,” don’t poison my body too much, and then leave the rest to the universe, or God, or fortune, or the kindness of strangers, or a combination of all four.
Because the fact is all my yelling on this blog and on social media and to anyone who would listen (including God) has come to nothing.
The American Industrial Healthcare Complex is in shambles, and that’s not my fault. I just have the misfortune of having cancer in Shambles America. Not my fault. Probably not your fault either, reader.
No one can hear me.
And I can die mad about this, but I’ve decided I’m not going to.
My story is this: I have a bunch of medical appointments scheduled for the end of this month and into February. I am trying to assemble my medical appointments so they work with my needs as a human being who has a work life, a creative life, a family life, a social life. Without the aformentioned pieces, my life doesn’t feel much worth living. My treatment, at my stage, is more about quantity of life than quality, I realize. However I don’t see the value in quantity of life for quantity-of-life’s sake. Quality counts. Really.
Starting today, I don’t beg anymore. I do what I can to get my treatment, but I do not beg and throw tantrums and exhaust myself, and I let go a little and in the letting go allow hope and good luck to take the reigns.
What I’m trying to say is that I’m still trying to save my life, still willing to get all the treatment I can — the best if andwhen it avails itself to me — but I’m no longer going to beg for my life because my life already belongs to me.
Is my Ibrance late? Yeah. Did I have to reschedule an infusion? Sure did. Last month did I spend up to four hours a week on phone calls trying to resolve these kinds of issues? Yep.
And I’m not doing this anymore, reader.
I will make one phone call per day.
I will offer no more than an hour per week to schedulers and pharmacies and insurance companies.
And that will have to suffice because I’m not punishing myself anymore.
It’s not my fault that I have cancer, and I am not going to let this fucked up system punish me for this fact of my life.
Furthermore, I know that when I die, in my final moments, I will not think “if only I had sat on hold with OptumRx for another hour . . . “ but I will probably think “What wonderful thing could I have been doing while on hold with OptumRx?”
Know what I’m saying, reader?
Like I’m not going to bring down the American Industrial Healthcare Complex. And I don’t have the desire or energy to do this work, anyway.
I’m far more interested in other matters, like teaching kids about creation myths and the Hero’s Journey. I’m more interested in reading World War I literature, listening to good music, and writing about my ancestors. I’m more interested in walks with my dog, and listening to The Velvet Underground.
Here’s to hope of a peaceful Friday. Maybe I’ll get my meds. Maybe I’ll get my infusion rescheduled. And even if I don’t, I know I’ll be okay. Onward, hooligans.
Tonight’s jam was “Venus in Furs.” Have a listen if you never have. Have a listen if you always do. Or don’t. I’m not the boss of you.
