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.
If you are a friend, you’ve no doubt heard me refer to the young Prince and my daughter, Sam. You may not have heard me discuss My Dude, who will be 20.
My Dude has lead a life of struggle – he’s no angel, despite his problems and all of our efforts, we could not help him. We tried our best, we failed him, but when he is ready we will try again, and again, and again, and again.
This left his mark on each of our souls in this family; they say when one person has a disease, the entire family is sick. (Whoever the hell “they” are, that’s about the only thing “they” ever got right.)
He also left his marks on our house. Walls written on, slammed doors, the broken dishes. They’re really silly little things in the grand scope of things, when you consider how many times we’ve had to start over: house floods, hurricanes. When his lows were so low and the anger beast would rage out of his fists and into the walls, nothing was safe.
For years, the holes would multiply, weekly, monthly, until eventually, I learned it was silly to fix them because they would come back, bigger, with more vengeance.
So we stopped. We stopped fixing the holes, we focused on simply surviving the best we could. We made horribly hard choices that parents shouldn’t have to make. He grew bigger, stronger, and his disease became more pronounced while he became increasingly distant.
Two years ago this week, what little was left of my world crashed down.
My Sam-I-am, left for the university; she’s my only daughter, my first born, my best friend, the first thing I had ever done right, and my biggest confidant. I wanted her to escape the madness, to spread her wings and go, but the selfish child in me wanted my friend, my baby, my daughter to stay. Two weeks before she left, I received a medical diagnosis that I kept secret for three weeks so she would go, as she’s the kind of girl who would give up her life to stay behind and help.
The diagnosis was so shocking, the amount of research was mind boggling while coping and adjusting our lives and goals around it. But we did. A couple months later, Dude had a break down, freak out, and then he left.
I have spent one and a half years without him, though he did briefly return twice. It didn’t go well either time, and both times he left on bad terms. Once, after a physical altercation with me.
Every night I go to bed not knowing where my son is, if he has eaten, if he is safe, if he is alive. When my phone rings from another state or an unknown number in the middle of the night, chills run up my spine and I feel like I will vomit, as I prepare for that phone call that no parent wants. Because I don’t know. I beg him to get to a doctor. A hospital. A police station. A shelter. Anywhere.
He’s never had a job. He’s never driven a car. He receives no welfare, no medicaid, no anything, he’s not a drain on your tax dollar, but does have mental illness and he is walking around this country. How has he survived? I have no idea. He is good looking, very good looking. He’s also very smart, and a great con man. I love him dearly but I’m not looking at the world through rose-colored glasses. I wouldn’t want anyone to cross his path because honestly I have no clue what he is capable of: he hasn’t been on medication for over a year and I can’t legally make him take any, as he is an adult.
So for this past year and a half, when I don’t hear from him for a week or longer, and I worry, or I get a call of him just talking crazy I can sit on my stairs and run my hand over that hole in the wall and try to absorb some of his pain. Because I am his Mom. It’s my job. Kiss the booboo, make it all better, right?
But, I can’t. I have never been able to make it all better. He goes from loving me to wanting me dead in one deep breath. So I leave the holes in the wall to remind me of his pain, to remind me of how I can’t fix him, how I can’t help him. All I can do is love him, remember that he is real, even if he isn’t here.
Over the last three weeks he was calling 10-15 times a day, and full of tiger blood and all grandiose, like Charlie Sheen. For some reason the stars lined up and a guy who did drywall came by, so I hired him and paid him. My dad went in the hospital last Friday. I spent the entire day in the emergency room until he was admitted. I got home and at midnight I got a call from another State that my Dude had been picked up, they wanted to know about his mental health and he had asked them to call me. I had to say horrible things about him, to strangers, who think I that am a mother who doesn’t love her son. What they don’t know is I love him enough to say those things so they will get him help.
In a strange twist of fate. The law being what it is, I can’t find out if they have my son, if he is alive, where he is, how he is. Nothing. Tomorrow will make six days since I have had an update and it’s eating at me, yet I have to go on, with work and life and baseball games for the Prince, Sam-I-am turns 22 on the 11th and graduates on the 13th. Still, I know nothing about my Dude. I kick out jokes, posts, tweets, pictures, but why isn’t my phone ringing, DAMN IT? I am his mother, I need to know he’s okay.
I went to the stairs today, put my hand on the wall where the drywall had been fixed. I just sat on there and felt I couldn’t have betrayed him more if I had tried. I’m so sorry, Honey. I hope one day you will understand that I love you to beyond the universe and back.
To all the parents who feel like they are failing, messing up, being judged, on the edge or losing it: you will survive. While I can’t guarantee your sanity, you will survive.
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.
The word rolled off my tongue and entered the heavy air in slow motion, “no.”
He was unbuttoning my shirt, and I put my hands up in resistance. He ignored them, pushing them away. There was a wickedly evil smile painted across his face, and he mumbled something under his breath.
I said it again, “No, please.”
He was determined; he shed my protective layer, and I felt even more uneasy. My hands were on his chest, pushing. I moved my legs so they would spill over the side of the couch. I was ready to get up, ready to leave, to pick up my clothes and turn my back on him. He grabbed at my thigh and placed his hand over my pelvis. A bolt of lightning ran through my body from the tip of my toes to the top of my skull. God, it hurt so damn bad.
No. Please no. No.
I squirmed, and he took that as a silent “yes.”
I shook my head, and I felt my mouth open. The words were foreign; they tasted bitter. I tried to spit them out. I had never begged in my life. Especially for something like the right to my own body.
My heart rate increased, and I felt like my lungs couldn’t get enough air. He forced me to touch him, stroke him, pleasure him.
There were tears running down my face as he stuck his hand down my pants.
“No,” I choked out.
He told me to shut up, and my chest constricted. I was trapped underneath his body. His thigh buried in my hip, hands working all over me, violating me as I hoped he’d stop.
After a while, I gave up. I stopped pushing away, stopped kicking, stopped fighting back. I only pleaded quietly, asking until my voice went hoarse. My body limp and that was the first time I truly felt like a corpse. In shock, my functioning ceased altogether.
He told me to be quiet once again; he slapped me, and I went red hot. My cheek burned. He yanked my leggings down; I heard the seams ripping and straining.
He set his face between my legs. His breath made me gasp, and he thought that was a good sign. I was shaking my head vigorously, convulsing. Broken sobs fell past my lips. Stop. Please stop. No.
He didn’t notice. Or he ignored it.
My body was trembling like an earthquake, and I was crying, pushing my fingers through his hair; I shoved his head away from me.
He was getting angry; I could see it in his face.
He grabbed my wrists, gripped them as if I was being taken into custody. In a way, I guess I was. Taken prisoner in my own body. I could feel the scream bubble up in my chest and throat, but no matter what I did, it wouldn’t come out.
He grinned, and I still despise that smile to this day. Going back to work, his tongue performed sins I couldn’t even think to voice.
“No,” I said. “Stop, please.”
I felt helpless and hopeless. I was stripped down, both literally and figuratively, and I was humiliated. I lost all respect for him.
I felt something pierce through my skin, into my veins. It traveled through my blood and made a home in my heart, rooting itself there. It spread into my muscles and tissues. It crawled into my bones and infected the marrow.
I was hollowed out, emptied. Stripped down until I was nothing but pieces of myself, just so he could put me back together how he wanted.
That was the first time. But it certainly wasn’t the last.
Yet, all of them have always been under my control. I just didnʻt know it.
All this time, I thought they had complete control of me, but the truth is, and has always been, that my demons for me, like yours for you, are ours to tame, name and obliterate (maim). Once they are tamed and named, they can no longer control you.
They can only be your bitches.
While this might seem very simple, I know it is anything but. I know that it is a demon son of a bitch to deal with the thoughts we think, and it is worse when the PTSD kicks in. I know, too, that people think you are pretending, but, I know that you cannot possibly pretend to be the thing that you have been fighting your whole life long – that thing that other people think and believe is your identity, or, sometimes, they think it is your mask.
It is the monster that no one thinks about becoming real in the lives of domestic violence survivors, and the irritating little mother fucker of a demon that likes to rear its head just when you thought you had the shitty little thing tamed. You find out quickly that these demons donʻt want to be tamed. They want to be what you want to be, which is free and wild. They want to be free to run wildly amok in the hallways of your memory, fucking with you until tears fall, and not only do others stop seeing the real you, even you stop seeing the person you always knew yourself to be.
My own demons like to play with me, they like to knock the fuck out of reality and truth, and they like to tell me that I’m not at all what others think me to be. My demons tell me all the time that I am not capable of doing things the right way, because I do things my way, and my demons like to remind me that I am not the prettiest, or the smartest, they tell me I am the most irritating person and that even the people who love me the most also and equally loathe me.
My own demons fight with me, argue the truth until there is nothing left of it, the proverbial pile of mindfuck particles left scattered around my psyche like some sort of diabolical confetti comprised of the memories that made me feel better, or made me feel awful, or made me think things that were not the truth, or made me believe that I was not ever in control of who I am…but that they were.
Then one day I figured out that those demons were askinʻ for it. They were literally, by right of their continuing to pop up in my life at the most inconvenient times, asking to be seen to, to be heard, to be told what to do and how to behave. They needed me to see to them, to stop feeding them the bullshit that, for so long, had made them sick and ugly and loathsome, and just completely miserable, and that kept me under their control.
Lots of times we do not see that we might be dealing with someone elseʻs demons, and ones that they show to us, and only us, for the purposes of healing them, through the power of love and truth all at one time.
Sometimes, the demons respond favorably, and other times, they fight back, wanting to live and be heard until they no longer have voice to scream at us with, or anger to flail through us with, or any other way of being or thinking that lives within us, because instead of letting them become like flying monkeys, we make them into the little fuckers who, no matter what, we have control of.
We canʻt see ourselves as anything but works in progress, and as such, sometimes we need to help those parts of who we are that are not that great. We need them to compare them to what we want to see, what is already there, and what just requires a little coaxing….
I do not know what to do. My owner hit me today. I growled at another dog and she full-out whacked me across the muzzle. Not just once, but again and again.
I am so scared. She has never behaved like this before. She has been so sad for months and months because she lost her dearest friend and was betrayed by another, but she has never been so mean. I would know that she was sad by the way she wouldn’t want to walk me or play with me or train me or even spend time with me sometimes, but she was still a good mummy.
I am trying to be a good doggy, but I do not know what else to do but to ask The Band for help. I listen to her, and she is so scared. She is scared because she is hurting me, and she is scared because she sometimes thinks that I would be better off at the animal shelter than with her. Even though it scares me, too, when she hits me, I do not want to live with anybody else. I just want her not to hit me.
I worry for her, The Band.
She used to love nothing more than to spend time with me or with any dog, but I can count on my 18 toes (if you count my dewclaws) the number of times in the last six months that I have seen her truly happy. That she has loved to take me for a hike or to agility training. I worry for her because she used to believe that a career with dogs is what she wanted, and in the last few weeks I have seen her barely tolerate the dogs that she is pet-sitting. I worry for her because she hugs me and tells me that she just wants to go back to bed.
I know she worries for herself, too. She does not know whether she is upset because she is still grieving over her lost friends, or whether her sadness has become something more. I do not have the answers for her, and that is why I am here.
My muzzle hurts where she whacked it, and my flank hurts where she grabbed it, and my brain hurts where she was sad at me. I do not know who else to go to.
The Band Back Together Project is a group weblog and nonprofit organization that provides educational resources as well as a safe, moderated, supportive environment to share stories of survival.
Through the power of real stories written by real people, we can work together to de-stigmatize mental illness, abuse, rape, baby loss and other traumas so that we may learn, grow, and heal.
All are welcome.