This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
2019 is the year I will find my personal equilibrium, the balance between what I must do, what I should do, and what I want to do. It’s not going to be easy, as I have a horrific time saying no and even more horrific sense of guilt when I do.
Unless it’s before my first cup of coffee in the morning; then saying no is easy and guilt-free because I’m too tired to care.
When the balance between the must, should, and want is out of whack, I’m a mess. I’m impatient, resentful, irritable, downright cranky, and miserable to be around. Everything becomes a chore, even the things I like to do.
That’s not fair to me, to my kids, to my husband, to any poor soul who has the misfortune of being near me when I’m struggling to keep up with everything.
That’s why I’m making 2019 the year when I will stop that crazy self-imposed struggle and focus my energy on the musts and the wants. The should-get-dones will just have to wait.
I will focus my presence and talents where they can do the greatest good – my family, my volunteer work (that means YOU, Band!), my creative projects, my home, my friends.
I will say yes to projects that are a challenge and will help me to grow personally and professionally.
I will cut the clutter in all areas of my life: physically, mentally, virtually.
I will re-examine my limits, and respect those limits, for when I don’t, it’s not good for anyone.
I will say no to school activities and fundraisers that are nothing but money and time-suckers that prevent me from doing other, better things with my kids.
I will say no to family functions that cause my stress level to sky-rocket, even when I’m told over and over again, “it’s for the kids”. It won’t be for the kids when mommy is stroking out on the floor because the in-laws are being asshats again.
I will ask for help when I need it and not wait for someone to see that I’m struggling.
There is no spectacle—no empty, gaudy, tin-hammered mockery bedazzled with tanks and star-spangled jingoism—that can bring honor to the honorless. There is no parade that can instill leadership, or merit, or ethical, rational thought.
There is no amount of desperate, flop-sweat vamping that can erase the knowledge of crimes perpetrated against the American people, or the seemingly bottomless well of sexual harassment and bigotry, or the concentration camps that stand in brutal, ironic contrast to the very notion of Liberty and Justice for All.
There is no shimmering fireworks display that can outshine the glaring lack of empathy toward the rights of women and minorities in our sociopolitical landscape. What sparkler can hope to compete with the blazing trash fire of constricting rights, expanding violence, and vanishing erudition?
Two hundred and forty-three years after this country was founded in pursuit of lofty ideals supported on the backs of the oppressed and displaced and exploited, we find ourselves with much to consider and little to celebrate.
If we would seek Independence in the manner of our forefathers and foremothers, then I would invite you today to seek independence from greed. From capitalist exploitation. From broken, hateful policies and standards that minimize human dignity while seeking to maximize profits for the inhumane. I invite you to declare your independence from the vision of the United States as either the world’s policeman or its enterprising overlord.
I invite you to declare your independence from “fuck you, I’ve got mine” and embrace mutually beneficial collective endeavor as a virtue. Participate in your political process, by all means, but break away from the idea that these grasping, puling monsters are meant to be our masters. Say no to bigotry. Punch a Nazi in the face, because when you stand up with capital-E EVIL, a face punch is the least you deserve.
Say no to equivocation and good-little-cogism. When you see the jackboot descending onto the neck of someone who’s not your color or sex or gender, don’t sigh in relief that it’s not you and look away. Use your voice and your hands and your heart—your raw, wounded, beaten-but-not-dead-goddamnit heart—to lift them up and cast the boot into the sea.
Look away from the scampering puppet show, there in the dark and the muck, where tanks roll like pilfered dollars and anyone too queer, too brown, too female, too empathetic is simply fodder for the beastly machine that feeds and feeds and feeds.
Break away, and look to the light of a tomorrow worth living.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.
I don’t do resolutions. I have never been able to keep promises I made to myself, so I quit trying. However, I can’t say no to Aunt Becky, so I’ve been trying to figure out what “I will…” do this year.
I was coming up blank until my conversation with my mom this afternoon, and it hit me.
I will be OKAY.
That doesn’t sound like much, and yet it’s huge. There was a time when being okay seemed an impossibility. I recall it vividly.
It was April 2, 2005. I was two days out of treatment for addiction, and I was annihilated. That night, I reached the point of perfect misery. I didn’t want to live and could not die. I finally knew that I could not live that way anymore, and I took the first step. I surrendered, and the next day, I began attending Narcotics Anonymous meetings like my life depended on it.
When I first got clean, I didn’t think I’d still be clean 14 years later. I certainly didn’t think I’d ever be okay. But I kept coming back. I got a sponsor. I started working steps.
The idea that I might someday be okay never really occurred to me. There were other N.A. members who I thought would be okay. Some of them are. Some of them relapsed. Of those who relapsed, some made it back. Some didn’t. I never really thought about which category I’d fall into; I couldn’t think that far ahead. Getting through each day, each moment, was too much of a struggle.
Even when I found that each day wasn’t a struggle, I didn’t really think about whether or not I’d be okay.
Until today, when I was laughing with my mom about something that happened today. The event is irrelevant. The awareness it brought me today is what’s relevant. I realized that I just might be okay.
I don’t mean I am cured. I just finally understand that if I keep doing what I’ve been doing to recover from the
disease of addiction, well, I just might be OK.
For somebody who didn’t think she was worth saving when she reached out for help, that shit is huge.
Today is a tough day. All the terror and hatred in the news is weighing me down. I must remember…
There are those who choose to define themselves with hate, so I will choose to define myself with compassion and understanding. I will not “hate” someone because of what or who they believe in, even if I disagree. I will try to understand their ideals and offer them a chance to understand mine. I will continue to teach my children that who someone loves, how they define themselves, where they are from, or how they worship does not negate their humanity.
I may not have the ability to change the world, but I have the ability to change me.