I sometimes wonder if you know how much we love being a part of this fabulous Band you’ve created, and how much of that love is rooted in our love for you. You have a way of letting those around you know that you truly care, and in this often too cold and callous world, that can mean everything.
Those of us who work with you on the Band Back Together Project are reminded daily of your dedication to the happiness and well being of those around you.
Those of us who have followed you for years, through Mommy Wants Vodka and the formation and falter and rebirth of Band Back Together, until today, understand that living our best lives takes a lot of work, a heavy hit of faith in ourselves and an ever-ready sense of humor, but we can get there.
Those of us in The Band, Band Mates in every sense, feel the warmth and love of this safe and gentle place you’ve created for us. We value the kindness and empathy we find here, and we envelope ourselves in it.
And those of us who are lucky enough to count you as a friend are amazed that such a kind, smart, sensitive and connected woman doesn’t see how much of an impact she has made on the world around her. And those friends want, this friend wants, nothing more than to see the flicker in your eye the moment you realize how dear, how valuable, and how loved you are.
So, our Aunt Becky, Happy Aunt Becky Day! We love you to the moon and back. You are our Dose of Happy.
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.
A while back, I was Facebook-friended by someone with whom I’d gone to elementary school, a woman I hadn’t seen in 15 years. In that same week, I was friended by another schoolmate, a man I hadn’t seen in 25 years. I’ll call these two people, who are not Facebook friends with each other, Leia and Mork.
I was happy to be back in touch with Leia and Mork. Leia and I, and Mork and I, in separate sets of messages, chatted in the way that long-lost friends do, telling each other where we live, how many kids we have, what we do for work. We exchanged several messages. A few messages in, both Mork and Leia asked me what sort of writing I did. And so I told them, as simply as I could: I write, under a pen name, about my son, who likes to wear a dress.
And you know what? Both Leia and Mork never wrote back.
Maybe it was a coincidence. Maybe the conversations just dropped off in the way conversations eventually do, and it just happened to be after I dropped the pink-bomb on each of them. Maybe they both got busy, sick, or their computers went on the fritz.
Or maybe they got freaked out.
Because people sometimes do.
I notice that the tomboy in Sam’s grade who plays on the boys’ soccer team is cool and socially in demand, while Sam doesn’t get invited to many birthday parties. Sometimes people look at us strangely when we disclose that Sam, the long-haired kid they’ve taken for a girl, is a boy. Sam’s school administration can talk eloquently about diversity and acceptance up and down, except when it comes to gender, when they get all panicky and quiet.
I make it my business to talk to as many people as I can about Sam (while being careful of his privacy and his safety), to make gender nonconformity something that gets talked about, not something swept under the rug. Because when we hide something, we make it shameful. So I open my mouth, maybe even more than I should, and occasionally I lose an audience member or two, like Leia and Mork.
But maybe the next time they hear about someone’s son who wears a dress, they’ll remember that the woman they kind of liked back in elementary school mentioned something about her son wearing a dress, and maybe that will make it a little bit more OK.
Where my family lives, there are very few people who know what transgender means, even though we are a sizeable city. Not even the doctors here knew what transgender meant until we explained.
Imagine having two transgender children in a community that is extremely conservative and evangelical. The schools are unwelcoming. The churches are unwelcoming. Most people reject the local LGBT individuals. The state legislature is actively pursuing bills that legalize discrimination against people like my children.
Given that the trans population is less than half a percent of my state’s population, the lack of awareness of trangender people is unsurprising.
Visibility of transgender people in the media is increasing, but not at a rate fast enough to make a dent in the general population. Here, where we live, at least, visibility occurs as the few LGBT people come out of the closet to their families, friends, coworkers, and ultimately to the community as a whole.
Being out in a conservative, Republican city and state is often dangerous. Add in any other minority characteristics and the danger to the individual increases exponentially.
My two wonderful teenage transgender sons have to navigate this world. It is terrifying to think of them in the school setting (so they are homeschooled), unbelievably frightening to think of them out there alone and out as they medically transition in the future.
Transgender visibility and awareness is vitally important. My kids were born into the wrong bodies. In the second trimester of my pregnancies, each of them were exposed to increased testosrerone, changing their brain structures to resemble male brains (https://www.sciencedaily.com/releases/2018/05/180524112351.htm).
Like sexual preferences, being transgender is not a choice. My sons, despite the identification at birth being female, are male. Because they are trans males, they are the lucky ones. They are less likely to be abused, less likely to be killed than trans females. They will, with testosterone, grow facial hair, increase their muscle mass and deepen their voices. They will enter into society with the stereotypical male look with ID cards that match their genders.
Most transgender people are not fortunate enough to have accepting families and doctors. Most struggle and suffer because of the extreme prejudices they face.
As allies to the LGBT community we can help change these struggles. We can make sure that all people are accepted and treated equally. Trans visibility is key, but without our speaking up for the community, for our friends and family members, change will be slow. We must make this a seismic change.
I was at odds with myself about writing this post, but the more I watch my neighbours in the US trying to destroy each other every day with an onslaught of barbs, jabs and hate speech, the more I felt moved to offer up my perspective….
I am a gay man. I was born this way – it is not a choice we make, so never let anyone tell you that it is chosen. Those who profess to be cured (“ex-gay”), were never gay to begin with. I am a loving, caring, soulful, spiritual man – an active member of society: I volunteer, I work in my church, I support my friends fiercely with their causes, and they know I will always be there for them. I strive to excel in my workplace and I am respected for both my work ethic and my contributions to my communities. I hold my family in the highest regard, and they bless me with the same love. I love my God and I am blessed in return with more in this life than I could have ever imagined myself. I am respected for “who” I am, for what I contribute, for this person you see before you.
But I am not – to cut through the stereotypes – promiscuous, into children, ready to marry my dog nor do I expect “special” rights. Nor am I a child of Satan, as “Michael Bresciani” has deemed gay people. I wish for the same protections, rights, freedoms, respect and benefits as everyone else. I have no hidden agenda, no secret recruitment scheme, no conversion tactics, no ulterior motive. I am not broken, misguided, evil, sick or less than.
I am exactly as I was created.
I want the same things as everyone else – to find love, to cherish each other for our similarities and our differences, to be respected, to be heard, to be treated with dignity and to make a difference in whatever way I can. For so long, gay people have been labelled as promiscuous, and I will agree that many are – just as many heterosexuals are. Hit any bar/nightclub on a weekend and the behaviour you witness is not so different in either community. However, to then deny us the opportunity to show that we are in committed, loving, respectful relationships or marriages, removes our opportunity to show that we function just like the majority. We too want stable, loving, beneficial partnerships to enjoy.
Same but different is not equal.
I have never understood the argument that “Same Sex Marriage” cheapens traditional marriage. How? How does my love for my partner – wanting that to be something beautiful – cheapen anything? How does it change your bond that I am blessed to live in a country that granted us the right to marriage equality, and have been married?
I was once asked by a friend, quite sincerely, “What does it feel like to be in love with another man?” I simply told her that my feeling of love felt exactly the same as it did for her. I watched as she sat for a couple of minutes – the look on her face changed, the light bulb went on and she apologized for the question. She proclaimed, “I had never even considered that it would be that simple.” I can only speculate as to why she had never considered that the emotional connection would be the same for me as for her, but her one question and my openness changed her life that day.
I am not going to wade into the religious argument – the mud-slinging in the name of God is fodder for numerous other posts – other than to say we were commanded to love each other. Judgements and hate-filled speech in His name don’t fly with me, regardless of which side of the issue you are on.
We seem, as inhabitants of this planet, to have a need to vilify each other on an ongoing basis. Pick a segment of society that has not been targeted in history: Blacks, Jews, Mexicans, Japanese, women…what is our flaw? Why do we have the need to take down that which we find different from ourselves? What if you were next?
Whatever your beliefs, let us remember that we are all “people” – flesh and bone, full of dreams, wants, needs and the deep-rooted desire to be accepted and nurtured. We are “all” special, we are all worth something, we are all valuable. We are “not so different” from each other.
Temper your words, lead with love, speak with kindness; we are all bothers and sisters of humanity.
Go out into this great world, love your neighbour, and most importantly, love yourself.
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.