Maybe a lot of you are too young or too straight to remember the AIDS crisis. I’m not.
It took my cousin, whom I loved deeply.
He was one of the few people in my life that I felt really understood me. It wasn’t until after he was dead from a horrible disease that I knew why. I named my daughter after him. He meant that much to me. And it took a long time for her to come to terms with being named after a gay man who died from the HIV virus in the 90’s, since we lived for many of her formative years in a small, conservative town in rural Iowa.
You see, a lot of people there didn’t much care that my cousin was dead. Many of them thought that he deserved that horrific end—it wasn’t a pretty one. He didn’t even want us to visit. He didn’t want us to remember him in that state, but to remember him full of life and color and joy. And people thought he deserved to die in such a violent way because he was gay.
Tonight I heard a neighbor outside my window saying some bullshit about more people dying in chihuahua attacks than will from the novel coronavirus, COVID-19. I’m certain that isn’t a true statistic. First, because those are some tiny dogs you could just kick into oblivion. Second, because we have no idea what the ramifications of this illness will be in the end. That is why it is called “novel”. It’s new. We don’t have data that is reliable at this point. We do not understand this virus fully, and we don’t know how many people will lose their lives because of it.
But one thing that I have noticed about the response to this virus, much like the one that took my cousin’s life, is that there are many who don’t seem to care what life is lost, as long as the right people die.
Those that are most susceptible to dying, as far as we can tell, are the old and infirm. Those that are most susceptible to dying, as far as we can tell, are the ones with preexisting conditions. Those that are most susceptible to dying, as far as we can tell, are the ones who are already in the categories that our current society—this consumerist machine we pretend is a democracy—does not value. The right people are dying, for the most part. And as long as that is the case, those that do not value them will not make the changes necessary to safeguard the society as a whole.
It is history repeated, but a different set of people are now waiting for the spin of the barrel, and the fated shot, and the moment to reveal itself. Will they live or will they die?
The lesson, if there is one to be learned, would be that all that death didn’t stop the LGBTQ+ community from thriving. In fact, in some ways, it helped inspire us to rally and organize and become stronger. And that illness didn’t just take gay men. It spread far and wide, becoming a leading cause of death for some time. It is still considered pandemic in some countries, where medications that are easily obtained here are not available. I
t still takes lives, even with all the advances we have made and our current ability to make it undetectable in some. It still frightens us. It is still a threat and a life-altering diagnosis and an automatic disability.
It stopped killing the right people. It started killing everyone.
You might not be a high risk individual. You might not know a high risk individual. You might not care about a high risk individual. But know this: you cannot control this novel thing. It might decide that it kills Tom Hanks as quickly as it kills a homeless diabetic. It might decide that getting it once doesn’t make you immune, but makes you more susceptible to reinfection. It might decide that it gives no care to malaria drugs that Trump likes, or to the economy, or to race, or gender, or age, or preexisting anything. It might mutate again and again, creating countless cycles of death on a yearly basis. It might never leave. We may never find a treatment or a cure or develop a vaccine. We may be at its mercy forever. We simply don’t know.
And if you are counting on this being fine because the right people are dying, then you are a monster who deserves not one death, but a thousand. To decide that you are more valuable than another human—that your pleasure or freedom or agency is more important than their life—is the worst possible thing I can imagine. The most heinous of crimes is to imagine yourself a person of greater importance than another, and to sacrifice them in your service.
I remember when I found out that my cousin was dying. I was grieving and distraught. The few people I told about his contracting the virus all asked the same question first thing, “Is he gay?”
Why did that matter? What was their fascination with his sexuality?
I didn’t really understand the question until today.
I saw the man who lives out behind my apartment complex and he asked if I had anything to eat. I told him to wait while I went inside and bagged up some breakfast bars and crackers and bottles of water—whatever I had around that he could easily transport and keep relatively fresh for a bit. I brought it out and handed it to him. I didn’t hug him like I usually do, because of social distancing, but after I went back inside I cried for the first time since this pandemic began. He is the type of person that so many others are unconcerned with. He is the expendable extraneous drain on society that we can let go.
And so am I.
So was Terry.
So were millions of men and women just a couple decades ago.
And yet, somehow, we have already forgotten that our callous hatred then is a blight on our history that we should not be repeating. We are going out to Spring Break or to see cherry blossoms while we let the right people die.
People asked if my cousin was gay because it justified his death, in their minds. It made it reasonable and righteous that an out of control, unknown virus was ravaging his body. They didn’t need to be afraid of AIDS if it was still letting the right people die.
I was taught to believe in a god by people who don’t care if he lets me live or die, so I’m not sure I am a believer in that, exactly, anymore. But I do have a system of belief that includes a Divine. These days I pray often. But I don’t request what you might imagine—health and for my loved ones to make it through this unscathed. Obviously, I want those things. But I find that I am begging that the Divine have mercy upon us, for allowing this lack of empathy and this sociopathy and selfishness and self-aggrandizement to go on, unchecked, for so many generations. I beg forgiveness that we continue to choose races and classes and groups that we deem expendable, as long as our own needs are met.
There is no person that should be sacrificed for our comfort. We should never be comfortable while others around us are losing their lives or freedom or resources. We should be fighting for their lives as if they were our own.
We are all human and we are all equal.
It is time to start treating one another as such, before there are none of us left to watch the others perish, because our greed has swallowed us all.
inequity
Food Chain
I’ve watched this progression happening inside my home over the past month or so. The container garden in my sun porch at some point brought little flying bugs into the environment. Whether they came from the soil or from the great outdoors is unclear, but they arrived, nonetheless. And I have tried several remedies that promise to remove the microcosmic infestation in the front window, to no avail.
But the progressive part is that as the population of the tiny insects increased, so did the incidence of spotting arachnids. Spiders. I hate them. I have an irrational fear of the spiders. I’m the Ron Weasley of the real world—freezing, crying, losing the ability to speak, and basically freaking out when a spider comes calling.
For the most part, the arachnids have been tiny, in correlation to the tiny bugs, I suppose. So, I am coping with relative sanity.
Next have come the “creepy bugs”. Someone once told me not to kill them, because they consume spiders, so they are apparently a friend to the arachnophobe. But they are no friend to me, because I consider them creepy. They look downright scary. They are some sort of centipede, I suppose, but they have legs jutting out the bottom en masse, and they have a symmetrical wealth of leg-like protrusions on the top of their bodies. I’m getting a shiver up my spine just imagining them for long enough to describe them.
I remember a time with my friends Nic and Adam had a snake in their second floor apartment. We lived in the same apartment complex, and when the snake showed up in their environment, I immediately jumped into anti-snake mode. That meant a concerted effort to trap and kill any and all mice or rats that could be present in or around my apartment. I’m not sure how you snake-proof a home, but the concern I addressed was the food supply for snakes, not the snakes themselves.
I never had a snake in my apartment. I did catch some mice. And the mice were present because some lady in another building on the complex had made it her personal mission to capture and send to shelters the cats that lived around the apartments. Had she left them be, the cats would be eating the mice, and the snakes wouldn’t move in because they would have no food supply and a potential predator in the cats.
So, as I watch this little cycle of life in my window sill, I think about where I sit on the food chain. And by this I do not mean that I am concerned with who or what might consider me meat. By this I mean, what threats and resources are affecting my life, and why.
I’m not high on the list as far as human hierarchy goes. I’m a disabled, impoverished, woman. So that is at least three strikes against me. I’m also white and educated, so I am offered some privilege. I suppose if we were to consider the hierarchy of my society (and several others) a food chain, I might be the spider. (Ironic, since I am petrified of them.)
I might be the one who had a few being “below” and a few “above”. I am not in the worst position, but I am not in the best. I assist others, but I also need assistance. I live in this middle space, clinging to a rung halfway up the ladder. And it gives me, I believe, an interesting perspective. I can relate to those with more and those with less. I can relate with the “haves” and I can relate with the “have nots”. But there are days that I cannot relate with either—or I don’t want to.
There are days when I want to leave this underserved, loud, dirty, potentially dangerous area. I get tired of the noise—the sirens, the yelling, the gunfire. I get tired of the long commute to anything and everything. I get tired of not fitting in or looking right or getting stopped by the cops because of my white skin. I get tired of being followed by dudes yelling “damn” at my ass. I get tired of trying to explain away how or why I live here without outing myself as poor. And I get tired of all the other people who seize stereotypes and make assumptions about this place I am tired of being in, because despite its faults, this is my home, and there is much beauty and strength in this place.
There are days when I want to be a person with greater means. There are times that I feel jealous of the friends with cars and homes and second homes. There are times I want the “American Dream”.
There are more days, however, when I want to scream at the people who have all of this, and to tell them what selfish, self-serving, privileged bullshit they participate in, without even knowing. I get tired of people who are wealthy pretending they are poor. I get tired of people whining about the inconveniences of their gigantic remodel. I get tired of people saying they are broke and then going out to dinner every night. I get tired of being associated with this type of upper-middle class person just because I am white and educated. I get tired of people assuming that I belong with the “them” while I feel like an “us”.
Frankly, it is exhausting to be in this middle space, between two worlds, because I feel like I must constantly critique and defend one to the other. I want everyone in my neighborhood to know that there are some generous and kind, rich, white people. I want everyone who would not desire to set foot in my neighborhood to know that it is filled with intelligent, hard-working, kind people. I need to constantly justify all the things to all the people.
And then there is the added stress of my own situation needing to be constantly justified. I need money. I need help. I need time. I need energy. I need surgery. I need to make it sound acceptable to have all of these needs, or people refuse to take seriously or meet those needs.
The middle is an impossible place to live. You can almost touch the better things, but if you reach up you risk falling back down into a worse space. So you stay, clinging to the little that you have. Hustling and hoping. Wanting more but not able to live through less. Clinging to the place where you have barely enough to survive.
If that sounds depressing, it is.
There are no questions as to why my antidepressant medication dose keeps increasing. This rung is a depressing one. This middle of the food chain feels like a constant threat, but also like a huge blessing. I’m not at my worst. But I am also not at my best.
And here we arrive at the statement “ignorance is bliss”. Because if I didn’t know the best, or the worst, I wouldn’t feel trapped in this middle, fearful of losing my grip and too paralyzed to attempt upward mobility. The people around me hope with an unyielding strength I have never seen before. They keep believing in the more, in the higher rungs, and in a new and better day. I know that the new and better day is not what it appears to be. I know that there is just a dollar or two between rungs. I know that there is prejudice at the top that keeps those with enough dollars to move up tumbling back down. I know that there is abundance and that it isn’t being offered to the people on the lower rungs. I know that if the people above would just share, the whole fucking ladder could turn on its side, leaving us with equity, and even footing, and no need to compete at the climbing. I know that those people don’t share unless it is in their self-interest, and their dollars come with strings attached. I know because I am in the middle. I know because I am the spider. I know because I have one foot in poverty and one foot in opportunity.
The proverbial food chain allows for ignorance at the bottom and ignorance at the top. But the middle is the space filled with knowledge—frustrating, hope-stealing, anger inducing, devastating knowledge.
I know poverty and possibility. And I am not better off for it. I am tortured by it.
The wealth of the top is achieved upon the backs of the ones at the bottom. We are the macrocosm of the microcosmic activity in my window sill. We consume one and escape the other.
And I can’t stop thinking that this is wrong. I can’t stop thinking that humanity should be behaving with a more evolved and more educated system than the insects. I can’t stop feeling that we are very far from what we were intended to be, and that the ladder and the food chain and the striving and the inequity are all distractions from where our attention ought to be placed. I can’t stop believing that we should be placing our attention and energy on justice—on ending the ladder.
There is this line spoken by Daenerys Targaryen, a character in J.R.R. Martin’s Song of Ice and Fire Series, that mimics the sentiment that I often put forth. After the many powerful houses of the era are named and called spokes on a wheel, she says with great conviction, “I’m not going to stop the wheel, I’m going to break the wheel.”
In saying this, she expresses that she will not simply be the newest in the line of leaders that overtake the current system. She is, instead, going to destroy that system. She is going to make a new way of being possible by taking apart the system of injustice currently in place.
I’m going to break the wheel. I’m going to break the ladder.
I’m going to create a new system, and not allow the once unjust and oppressive way of being to survive. I’m not going to tolerate the present and hope for a better future, but I am going to smash through the present to create a new present.
What if we stopped being a glorified food chain and broke the ladder? What if we let go of the ideas of “earned” and “deserved” things and status? What would Daenerys do today?
WWDD: What Would Dany Do?
How do we break the wheel in our own society? How do I stop being the spider and consuming the fly? How do I keep the creepy bugs from chasing me? How do we create a system that doesn’t look like the unevolved and inhumane clamoring for power and money and resources, and instead looks like cooperative and compassionate co-existence?
I’m tired of being in the middle, but I am more tired of the idea of the middle. I’m tired of caste systems and hierarchies and patriarchy and all the other systems of oppression and power that make us predators or make us lunch, depending on the situation.
It is time to function on a higher plane. It is time to break the wheel. It is time to end this system and find a new one. It is time for human beings to step outside of the food chain, and use our enlightenment for good and not for evil.
It is time to stop treating one another like meat.
In the Mood
I can’t seem to stop listening to Rachmaninoff. I’m just in that mood. Or so I thought when I first turned my Spotify account in his direction a day or two ago. But the more I listen, the more I wonder: What mood is that exactly? Because one thing I am noticing about his music is that it has a thousand moods, not just across the entirety of his compositions, but in one work there can be angry and playful and lilting and intensity and struggle and peace and fun and frustration…the list goes on. There isn’t usually one space where your mind and heart remain while listening to this diverse and divine music.
I think, at present, I am drawn to the urgency and the drive of many of the pieces to which I have been listening. Life feels like that lately—like there is more urgency. Urgency for or toward what has yet to be determined, but I suspect that it may be tied to the death of my mother.
Life just seems like it needs to be lived, and I feel as though I might not be making enough of my moments.
The other possibility is that the angry parts of me are connecting with the angst-filled phrases of the movements Rachmaninoff has written. It lets me feel anger, without acting upon anger. It is easy to be angry, and easy to displace anger, but it isn’t very easy to cope with angry thoughts and feelings. Of course, I know that anger is always a secondary emotion. It isn’t actually anger that you experience, but hurt or fear or rejection or some other thing, which then comes out as anger. And usually my anger is from hurt or abandonment or betrayal or fear. Lately, I have been wanting to tell myself that frustration is what makes me angry. But frustration is not an emotion, per se. You get frustrated, but you don’t really feel frustrated. My frustration is a result of anger, which is the result of hurts and betrayals and fears that I don’t wish to acknowledge. This is not surprising.
Few of us want to acknowledge our hurts and fears. Few of us want to be vulnerable in that manner. Few of us want to accept what really goes on inside our heart and mind and spirit.
But in order to stop feeling that angst-filled frustrated feeling, I need to acknowledge that it comes from pain. Lots and lots and lots of pain.
No one could know the depth of that pain, because not one single person has ever heard the entire story, or all the little stories pieced together into a lifetime, I suppose. Not even my therapist of the past one and a half years has managed to root out all the moments and combine them into a reliable accounting of all of the pain that my body and mind and heart and spirit have suffered. There are ways, however, to notice what ties those experiences together, and what struggles trigger the strongest reactions. And this week, many of those triggers were set off, and I (like any good PTSD sufferer) went on high alert, and began to tie all of that pain together and swing it around like a sword, desperate for a sensation of, or even the illusion of, safety. And then, once the sword of hyper vigilance fails you, you shut down.
I am an expert at shutting down. My body and mind have found ways to disconnect that I stand in awe of, and my whole person is very capable of shutting out the world through isolation or through what I, for lack of a better term, might call “pretending”—the sense of being physically present without connecting in any real or meaningful way with your surroundings. I can act like I care, or act like I don’t care, or both, depending on the situation. I can adhere to social expectations without being the least bit engaged.
But Rachmaninoff makes you feel. He is turning me back on—giving me the ability to engage with something that resembles human connectivity and emotion, before I can connect with my actual emotion and engage meaningfully with actual humans. He gives me a mood, when I cannot find one on my own.
Eventually, I connected with what I feel, and the reasons I turned off. I was triggered by an idiot employee at a sandwich shop yelling angrily and calling out “HAM AND TURKEY” when I was distracted by an older man with a walker who dropped his change and didn’t notice that the employee now wanted to know whether lettuce was required to meet my sandwich’s completion. He reduced me to my sandwich toppings when he treated them as though they were my name, which reminded me of the times I was called “woman” or “my old lady” or “bitch” or “dumb cunt” or “crack whore” or any number of marginalizing terms that refused to acknowledge my complex identity, but reduced me to an action or a gender or a role. That hurts. Being marginalized always hurts.
I was triggered by the knowledge of the divide between rich and poor, and the continued struggle with accepting that my career has been ended by my illness, and that I may always be poor. This trigger happened in the waiting area of the dentist’s office, when I was waiting to have my teeth cleaned for the first time in five years, since my state-managed insurance plan just began to pay for such services. And, while I was thrilled to be able to have a dental exam and cleaning, I knew that the exam might result in the determination that I must lose my last molar on the lower right side, because this dental care came far too late, and it can be taken away again with a pen stroke–resulting in a face of gaps and gum recession that will make it impossible for me to pass as a person of means, or get a decent job, or be taken seriously by many. I am poor. I don’t want to look poor. I want to continue to pass for someone who isn’t poor. And it hurts that poverty is my situation. And it hurts that I feel continually shamed and sometimes attacked and often trivialized or marginalized because of that poverty. It hurts that poverty is considered downright criminal in the minds of many, including lots of my Facebook “friends” and those whom I once believed I could trust with my story. And it hurts that I recognize all of this and that I know I am complicit in the shaming by desperately wanting to pass more than working harder to end the stigma and embrace myself, even if my self has no money and no teeth. But that work is difficult, and the stigma I carry is already a heavy burden.
I was triggered by the feigned “concern” of others. It is gaslighting that was truly happening, and not any sort of true concerned care for my wellbeing (unless you count the worry over my eternal soul not being allowed into heaven because I am evil and misguided as care … and I don’t). In this particular case, a person misinterpreted and misrepresented the information in my previous post, and expressed that they didn’t sleep well and spent time in prayer and god apparently gave them a “devotion” in reply, which basically said that uneducated people know more than me about god…so I am evil and misguided (but apparently considered very educated, which is true and complementary). It would seem I am meant to be shamed by the person who mangled my ideas and misquoted my post and to recognize that my views are wrong, thereby causing concern for my soul. This feigned concern and this gaslighting have been ever-present for me, starting with childhood sexual molestation, and making stops at domestic violence, victim blaming after sexual assault and rape, shame for pursuing education rather than work as a single parent, blame for the infidelity of a partner, and expressions that discount my sexual identity, before ending once again at the church and its deep concern over my soul (which has appeared many times along this journey). I am not insane or misguided. I need to tell myself this repeatedly in an attempt at self-compassion, because the idea that I don’t know what is right, but another does and will tell me how to be or act or think, was deeply engrained in my psyche after years and years of abuse. When people I once counted as friends begin to use this very abusive tactic, I am deeply hurt. We rarely consider moral, church-going ladies as abusers, but perhaps we should—they are often the worst offenders when it comes to gaslighting. Gaslighting hurts.
So, yes, I am connecting with Rachmaninoff because I am working at getting back to feeling, and because the secondary anger comes out in his music, but so does the calm and peaceful, and the joyful and playful, and the anguish of the pain that is truly behind the way that I am feeling deep down, in a place with which I am still unable to fully connect.
It is difficult to connect with our brokenness.
It is difficult to acknowledge pain. Our society tends to mask or cover or hide or control pain. And it certainly doesn’t want to take ownership of the pain that is caused, personally or societally. We have been taught that pain is owned by the one who suffers, and not the one who causes the suffering. We refuse to admit or confess that we hurt others, either by our active oppression or by our passive inaction to correct situations that produce suffering.
However, if the first step to solution is recognition of the problem, we need to face that hurt head on, and look at the ways we are causing pain. I often think this begins by accepting that we, ourselves, are wounded. The most broken among my friends have become the strongest advocates for others. My own passion for justice was borne from the injustice I felt as I journeyed through forty years of struggle and pain and abuse. This isn’t uncommon. This is the way to bettering ourselves and becoming a better society—this recognition of our own wounds fuels our desire to spare all others from similar wounding.
I think that this connection between my wounds and my areas of passion is key to how I have been struggling the past couple of days. When someone begins to attack those areas about which I am passionate, they are, in a sense, also attacking my wounds.
I fight for the rights of women because my rights to choose what happened to my body and in my life were stripped from me. I fight for reproductive rights because I suffered a lack of care and compassion when dealing with the loss of a pregnancy and a lack of care and compassion as a single parent, and also experienced the failures of birth control and unintended pregnancy. I fight for LGBT+ rights because I know and love many who don’t conform to the standards and structures that the gender binary and the heteronormative patriarchy deem correct and good, and because it took many years for me to even consider my own sexuality, and even more to admit to people that I don’t fit that heteronormative mold. I fight for the end of mass incarceration and for racial reconciliation because I love and live among black men and women who are being violently abused by not only our stereotypes and individual assessment of race, but by the laws of our country and the limits of our compassion to those who look and act and speak and live in ways identical to our own. I fight for a limitation or prohibition of firearms because I see the bodies of boys and girls and men and women who needn’t have died and wouldn’t have died if it weren’t for ridiculous access to what nobody, outside of law enforcement or the military in most cases, should need. I fight for the homeless, because I spent years of my life as a homeless woman, and some as a homeless mother, and I ate from dumpsters and had sex with people just to sleep in a bed for a few safe hours and stole food and toiletries in order to survive, and nobody should ever have to live under those conditions, no matter what else they may have done or not done in life.
I fight for those who are experiencing what I have suffered (and in some cases still suffer).
Saying my fight for these causes is evil and misguided is saying that I am evil and misguided, because these are not just some nameless and faceless people whom you can criminalize and marginalize and oppress. These people are me. And saying that these causes don’t matter, in essence, says that I also do not matter. (But apparently my soul does…just not the rest of me.) That hurts.
So, today my goal is to allow emotion. I intend to acknowledge these feelings, and to connect with these feelings or to let these feelings go, as I choose.
Because we cannot control what we feel, we can only choose how to react or interact with what we feel.
Mindfulness practice has taught me much about how to let the oppressive and hurtful things that others say and do affect me less, or sometimes not at all. I’m learning, slowly and surely, how to leave behind what harms me, and to embrace what loves and holds and builds me. I am the only constant, and even though everything around me changes, I can choose to remain as I am. I am the mountain, as Jon Kabat-Zinn and my therapist are teaching me to remember. So I choose whom I wish to be and to become. Gaslighting church ladies, and poor public policy, and abusers and offenders of all sorts, and the money in my bank account (or the lack of, more truly) do not define me. I define myself, so I am free to acknowledge the comments of others about who I am, or I can let them float away. They need not hurt me anymore.
So, Rachmaninoff, thank you for all the feeling that you have offered me, and for the connections that you allow me to make. Your thousand moods have reminded me that I only need to be in one mood, and that is one that I choose—no one else may choose it for me. And I choose self-compassion and love and grace and peace and truth, as always. I choose to embrace my poor, disabled, non-hetero, non-religious, highly educated, thick and sexy, fighting for equal/human rights continually and with passion self. And I choose to embrace the person I am becoming as well, and know that I will continue to grow in grace and in truth and in love, because that is what I will accept and allow into my life.
I am now in a great mood. 🙂
Learning To Be Whole 