Crisis after crisis, they break like waves. Some can ride them, and some get sucked under. It all depends on how you start and the skills you cultivate. It depends even more on the ones who taught you and the ones who are meant to pull you out.
It was Valentine’s Day, 2017, just over four years ago now, that I was formally, and finally, diagnosed with an inflammatory bowel disease and nothing in my life has been the same since.
I spent the evening before preparing for my first colonoscopy. I had a place all set up with blanket and pillows halfway between the kitchen and bathroom so I could choke down large glasses of prep every 15 minutes then run to the bathroom after throughout the night without waking my wife. It was the first of many depressing evenings we’d spend apart because of this disease.
I was only 32 and far too young in my mind to be preparing for my first colonoscopy, but I knew something was terribly wrong with my gut. I’d been bleeding more and more heavily with every bowel movement up to 15 or more times a day for over a month before and between the pain, exhaustion, and fear I was left little more shell of myself.
The disease was already chipping away at my work performance, my relationship, and my sense of self worth. In that short time, I had started missing days at a time of work. I was unable to socialize with my friends and family. I was too tired to spend time with friends or family, take care of my home, or do anything of the things I enjoyed. It would be my first lesson in this disease. It doesn’t take long for it to strip you of everything.
Arriving at the doctor’s office my dignity was quickly stripped as my clothes we removed and I was wheeled lying down into a room to face doctor whom I’d never seen and who would see more of me than anyone had. I’m thankful for the sedation that came next and the memories I will never have.
I woke afterward, confused and hungry, in a small room with my wife waiting for me to return. She helped me dress and suffered my memory lapses through the last of the sedation. I remember only bits and pieces of what was said then. I remember being handed a packet of papers printed with images from inside my body in exquisitely horrifying detail.
I remember the words ulcerative colitis coming from the doctor and trying to connect the meaning of the diagnosis to images of deep red seeping through the inner wall of my large intestines.
Ulcerative colitis is a type of inflammatory bowel disease, similar to the more widely known Crohn’s disease. My official diagnosis is Ulcerative Pancolitis, meaning that my entire colon is chronically inflamed. This causes debilitating symptoms and, if untreated, can lead to life-threatening complications.
Since that Valentine’s day I have experienced some of life’s steepest ups and downs. There have been a myriad of treatments, procedures, and pills that all work for a time before the troubling but all too easy to dismiss symptoms return and I head straight back to square one. I’m still searching for a new and lasting normal that I can live with but as more years pass and more damage is done the ultimate and last line of defense approaches—surgery to remove my entire colon.
This may sound like a “cure” but I am assured that I would simply be trading one set of problems for another. Still, from here, life without a colon looks better and better all the time. Until then, there are steroids and immunosuppressants. There are meal replacement drinks, supplements, and probiotics. Until then I am simply surviving, but I wonder, at what cost?
To be fair to my body, most of the hardships I face aren’t all down to the healthcare system with its exuberant costs and many layers of bureaucracies. Most of what makes this disease hard to live with comes from society with its values and norms that when can’t be met place the failure squarely on the individual and names them inherently weak, broken, and attention-seeking.
The hardest part, in other words, is a lack of understanding on the part of people who do not have to fight the same battles I do.
The truth is, my disease is often invisible so in an effort to make my life—and the lives of those who suffer similarly—easier, I’ve decided to quit bearing this burden in silence. I’ve decided not to pretend I am normal or delude myself into thinking that I can keep up. I do not hide and I do not minimize. I advocate for myself. I ask for help and insist on rest. I make this invisible disease visible. I educate everyone around me.
So, in that vein, here are some of the ways inflammatory bowel disease has changed my life that I wish the world could see:
When I was first diagnosed, people were very sympathetic to the pain I was in but as the days of pain became weeks and months at a time, I noticed the comforting words waning. Someone at one point said to me, “If it’s everyday I would just assume you would get used to it.” You don’t “get used to” pain. It never stops hurting the same as the first time and as long as I am flaring it never stops hurting. I can push through the pain but you can’t imagine the energy and emotional toll that takes to complete everyday tasks though this.
It’s not the same as tired. It’s a kind of exhaustion that can’t be cured with more sleep, though the body tried. Drowsiness overwhelms me and like a someone who is starving and can only think of food, or severely dehydrated and can only think of water, my mind is often consumed by thoughts of sleep. My mind plots at work looking for dark corners to close my eyes in and I daydream about the moment I can go home and lay my head down. I’m often unable to fight off the drowsiness and days have gone by where tasks, events, and even quality time with my loved ones have to be put off.
Medications and Meals
Ulcerative colitis, though it is a disease that affects the gut, it is not a disease of the gut. It disease primarily of the immune system and this means that treatment includes both strict medication and meal regimens.
Most of my day is structured around my treatment and nutritional needs. I have alarms and reminders that tell me when to eat, when to take medication, when to take probiotics, when to drink water, when to take supplements, when to add fiber, and when to eat more. It’s a lot to remember, and there are days when I don’t want to live this way. It’s a lot and often it doesn’t seem worth all the effort when I still have debilitating symptoms.
Worse still, when you find what does work, that doesn’t mean it will work forever. Finding the right medication or combination of medications is a matter of trial and error and after beginning a new course it can take weeks or months to know whether a combination or strategy will fail and the process of trail and error must begin again.
Embarrassment and shame
I’m 36 years old now and have had at least 3 or 4 colonoscopies. I will probably have another before this year is out. I have given countless stool samples, sent emails to doctors describing my bowel movements, and submitted paperwork to my bosses explaining my symptoms in great detail.
I’ve used every kind of suppository and enema, cream and wipe. I carry a card in my wallet that explains that I have a medical condition and must be given access to a bathroom when needed. I’ve had accidents when I couldn’t get there in time and now carry a second set of clothes with me just in case it happens while I’m at work or out and about.
These sentences my gross some of you out, but this is my life. I often feel that I have no dignity left, that privacy is a luxury I cannot afford, and that there are whole parts of my experience and many emotions I have to keep hidden out of embarrassment.
There is so much that is unknown about this disease and without a cure it’s hard to look forward to a life that will look any better than it does when you are exhausted and hurting. I’m afraid of what this disease is doing to me. I’m afraid of what the medications are doing too. I’m afraid of being too much of a burden. I’m afraid of falling behind. I’m afraid of accidents. I’m afraid of food. I’m afraid of surgery. I’m afraid life will never be like it once ways and I’m afraid I will feel like this forever.
Losing your relationships
It’s hard to ask so much from other people. You wish you could be the strong and capable one and take care of others for a change. Over the long-term caring for someone with a chronic disease can be fatiguing in itself. This is normal. This is okay. I have to accept that on some level I do require extra accommodations and emotional care and that means others have to give a little more when I can’t.
I try to be mindful of how much I ask and how often, and only take what help is absolutely necessary. Still, there are months when the flares won’t end and the house is falling apart or my work is falling behind and I am forced to take more than my fair share of the rest rest and respite. In those moments I see the look on other people’s faces. I know they are wishing I was better, and wishing it wasn’t them that had to take on more for my benefit.
Before my diagnosis, I enjoyed being somewhat active. I used to run and hike. I did simple body weight workouts at home. I went out with my friends. I hardly ever missed work and had a reputation as an exemplary employee who went well above and beyond. I was happier, funnier. I was enthusiastic, focused, and hopeful.
That version of me still exists somewhere. I see glimpses of her when a new round of steroids is started or moments when remission looks possible. When there are days without pain and I’ve been able to sleep for a time, she is there, reminding me that not all is lost, now or forever.
But on days when all I want to lay in bed, when the weight has been coming off and I still find food terrifying, when I’ve had to call out from work again and my wife is missing the person I used to be, on those days, I cannot even recognize myself or this life I’ve come to live.
Love and Community
Ulcerative colitis can be an incredibly lonely disease. No matter how you explain, no matter how much your loved one’s want to understand, no one can know what it’s like to live through what we do, not even our doctors. The biggest help I have found is in support groups. When I have questions, frustration, or fears, there are thousands of people all over the world ready to offer information, advice, and support.
In addition, it’s a credit to my coworkers, friends, family, my healthcare team, and my amazing wife that I have been able to work, love, and live through such pain, fear, fatigue, and shame. Without them I would not have been able to achieve the—admittedly few and far between—glorious months of remission I have known. It is through the love and care they have shown me me that I was able to love and care for myself. It is with them that I have been shown how to find joy in the darkest of times.
This World IBD Day, my heart goes out to all those who truly know what it’s like to live with this disease. No matter how severe your symptoms, or where you are in your treatment, I see you. I know your struggle and I know your bravery. I know how hard you are fighting and I hope you know that even at your worst, at your lowest, at that moment when you want to give up most, you are a warrior.
You are not invisible to me, and I hope one day we will all be more visible to the world.
1. There are other ways to understand.
My plants can’t speak to me, but they have a language all their own and I’ve had to learn to understand it. I’ve had to study soil composition and learn the meaning and purpose of air roots, nodes, and petiole. I’ve closely observed the cycles of new growth and dying back, of yellowing, spotting, and curling leaves. I’ve had to interpret these signs from a perspective foreign to human reasoning.
What at first appears to be a sign of distress could instead be a sign of thriving, a sign of the next cycle, or simply a lesson in letting go. I’ve learned to listen outside of my experience and assumptions and to simply take in what a thing is trying to say.
2. Make time to check in.
A lot can change from day today. Temperatures, amount of sunlight, humidity, growth, and pests can come on and shift within days or even hours. Make time every morning to poke the soil, move some leaves around, inspect stalks and roots, prune, move, or adjust as needed. Make time in the evening too, if you can. You’ll keep from spiraling, from losing motivation, progress, or focus, you’ll keep life from getting too hard to manage and situations from getting too far gone to recover from.
3. Adapt to the needs of each day.
When I first started collecting different types of plants, I set out to set up a calendar and corresponding spreadsheet to track which plant needed water, when. What happened was a lot of swinging from too dry to too damp. A lot of drooping leaves and rotted roots. The problem was, I wasn’t listening. I wasn’t taking into account the changes in temperature, humidity, and light. I wasn’t considering circumstance and change. For some things, planning and preparation are impossible. Some days have to be reacted to.
4. Giving too much can be as detrimental as giving too little.
I’ve often given too much to my plants. Watering before they were ready, placing them in direct sunlight in an attempt to force growth. Soil that’s too rich followed by fertilization far too often, all because I thought more was better. I thought I was doing what was right, but I was only doing what made me feel good and that isn’t the same as love or care. In our relationships, we have to love as others need us to, not as we want to.
5. Appreciate seasons, surprises, and even setbacks.
Viewed within the confines of a home and from day to day today, the life of a house plant hardly seems to change at all, but if you begin to be mindful of the sun, the temperatures, the soil, of each new leaf and each flower, you can see there are seasons even for the sheltered and the carefully cared for.
There are seasons for dormancy, for slowing, for fertilizing, for repotting, seasons to cut back, to water more, and to water less. There are seasons for everything, and no season can be made into another. Take each as it is and for its purpose, you will see so much more progress this way.
6. Take on only what your environment can support.
There are so many beautiful and exotic plants I would love to own, but the hard truth is I live in the wrong climate zone for most. The air is too dry, and the sun sits too low. Temperatures are too cold for too many months out of the year and inside, I have the wrong size windows and none of the faces in any of the right directions.
The kinds of plants I can properly care for aren’t the kinds of plants you see in those Instagram-worthy photos, but they are what works for me, my lifestyle, and my environment. Accepting this has resulted in less stress for me and less stress on my plants.
7. Propagate, give away, share, spread the love.
For a long time, I hoarded my plants. I refused to separate, to cut, to share them with anyone. I had done the research. I had done the work. These pups and propagations were rightfully mine and mine alone, but soon many of them outgrew their pots, my windowsills, and the limits of time I had to give.
I now consider it a testament to how hard I have worked and how much I have learned that I have so much new growth to give away. Now I enjoy potting my baby plants and finding new homes for them. It feels good to brighten the room and moods of loved ones and perfect strangers alike. It feels good to impart these lessons to as many people as I can reach. And if I choose, and there will still always be more left over to keep for myself.
I want you to know more than anything that I see you. I do not look past you to your tragedy, nor do I see through you to the future when you are free from it. No, I see you now and as you are now. I see you as you cannot see yourself.
I see you through the lens of this moment and this moment only because I know you are not who you were then and you are not yet who you are going to become. I accept you for who you still are, who you have worked so hard to grow into, and for what I know you carry with you in every waking moment. I accept you. I accept all of you.
I want you to know that though the road has been unimaginably hard, and the road ahead has its own twists and turns, sharp declines, and uphill battles, I will walk the way with you. I will not fall behind lingering over battles already won, nor I will not walk ahead where you are not ready to tread. I will walk the way with you, hand in hand.
I will speak to you along the way so you know you are not alone, and I will listen without judgment when you need to share your deepest pain. I will remind you of what you have forgotten and remember forever the courage you are teaching me to have now too.
When the way gets hard, I want you to know that you deserve your body. You deserve your mind, your heart, your soul. You deserve your hopes and dreams. You deserve your emotions, all of them, from your light and lovely joy to your red-hot burning rage. You deserve safety and a secure sense of self. You deserve to live and, when you are ready, you deserve the infinite love this world has to offer.
More than that, you deserve the infinite love you have to give yourself.
Until then, dear Survivor, I will hold you in my heart until you can hold yourself again. Until then, I will love enough for us both—for the entire world if I have to! I will love you when you think you cannot be loved. I will love you when you would wish me not to. I will love you at your lowest just as much as I would love you at your best because to me there is no difference.
There is only you, beautiful and bright you, shining through, always.
What is your demon?
I have many. If it isn’t a lack of energy, it’s a lack of confidence, and if it isn’t a lack of confidence, it’s a lack of focus. I suspect at the base of them all is the real demon: a fear of change. To move is to risk the worst as well as the better.
What is the most important part of your education?
The continuation of it. I didn’t graduate from high school, but it wasn’t for lack of interest or intelligence. Now that I have overcome so much of what held me back, it’s time to pursue the journey again.
Which “thinker” has had the greatest influence on your life?
There was a time when I would have answered Charles Darwin, Carl Sagan, or Marcus Aurelius, but I’m broadening my horizons and seeking new influence from thinkers like Simone de Beauvoir, James Baldwin, and bell hooks.
What do you doubt most?
The American Dream. It fails to take into account deep rifts of class, race, and sex and instead places personal responsibility on each citizen not only for their successes but their failures to meet nearly impossible expectations of wealth and health in the face of enormous institutional and systematic obsticals.
What is happiness?
Safety and space, both physical and temporal. So many of us are giving up precious life just to keep a roof over our heads and food on the table. This is simply surviving. Being one misfortune away from losing everything isn’t safety, and without time to focus on our more abstract needs or space to make something of our own, we’re hardly better off than animals.
What does it mean to be human?
To be so aware and so affected by the cold indifference of the universe. We cannot live simply by our instincts. We cannot be content with simple survival and procreation. Instead, we must always be “making meaning” and working to “conquer mortality”. No other organism on this planet is burdened by such senseless wants or worries.
What illusion do you suffer from?
The illusion of time. I often can’t believe I am as old as I am, and I certainly can’t comprehend how little time I may have left. In my mind there is always time to do it tomorrow, later, someday. The reality is time is ticking down and there isn’t a second that has passed that I can get back.
If you could choose, what would you have for your last meal?
The same meal I choose every year for my birthday: crab legs, artichokes, and lemon butter dipping sauce that never runs out. I might add a few dozen oysters and a nice bottle of pinot grigio to wash it all down.
The question you’d most like to ask others?
What is a human life worth? It’s easy to trade lives half a world away for daily comforts here at home when you never have to see or think about it, but if you did, would you keep consuming, polluting, voting, or believing the way you do?
Your favourite word?
Melancholy: a feeling of pensive sadness, typically with no obvious cause.
What is your motto?
“It is what it is, and it too shall pass.” Nothing that has passed can be changed and the present is an undeniable result, but that doesn’t mean you should ever feel stuck. Time is always moving forward and nothing ever stays the same. Not your circumstances, and certainly not you.
What is a good death?
There is no good death. There are better deaths, sure, but no matter how you loving or long, rich or influential a life you have lead, it will inevitably end someday and all that you will leave behind is sadness in your wake. Nothing good comes from death.
What is the meaning of life?
Each life has its own meaning, and the only life’s meaning I might know is my own, and even that is unclear. If I had to guess, I would say to open hearts to a truer meaning of love, and minds to a more complex understanding of the self and others.
It’s been just short of a week now since news broke that the President of the United States had contracted the novel coronavirus and subsequently was taken to Walter Reed to undergo treatment for COVID-19. Since then many liberals and leftists have taken to social media to voice their fear, anxiety, and compassion for the President’s recovery.
In the ensuing uproar of opinion and speculation, the party has broken into warring factions as the misinformation swirled and tempers rose. On one side many on the left sent well wishes to the president, and many others sent wishes not just of severe and worsening illness but of death as well.
Each side attacked the other, preaching and moralizing about whether or not the act of wishing well or wishing ill on a man who had caused the suffering of so many was right or wrong. They debated what this said about the Democratic party, where it’s been, where it is headed, and how it has become—in the eyes of both sides of the argument—exactly what it professes to hate.
If I am honest, I had myself been fervently wishing the President, and his entire administration would contract the virus since at least last March. I heard his downplaying and his rhetoric. I saw how little action was taken. I marked the way blame was passed, and became disgusted.
I wanted him to catch it not so that he would die from it but so that he would understand the severity of the pandemic, empathize with those most affected, and step up and lead the world. I wanted him to protect those he was elected to represent. I wanted him to learn and if he must learn the hard way, then so be it.
This is not the first time I have wished harm on those who believe and vote politically opposite me. For most of my life, I’ve watched as politicians stood behind podiums to spew hatred and disgust my way as well. I am a woman. I am Black. I am queer. There has been no election cycle I can remember that left me unscathed, and year after year I watch as they take and exchange power and give no thought or care to those like me.
This is why I cannot bring myself to sustain friendships with those who identify as conservative or vote Republican. I know my value as a human being and my experience under their power is of no consequence or care to them. They extend me no well wishes for healing or happiness. Their platform is full of wishes for quite the opposite.
And from where I have stood and fought, as one person with so little power that there are years I believe I have none at all, from here, sometimes, all I have is my anger, my disgust, and my hatred to get me through the shame and fear and disappointment.
These past four years I have clung to those emotions and, if I am honest, I never did have any well wishes for the President or his administration. Then, when the news first broke of the President’s illness, I went a step further and reveled in the jokes and the irony. I empathized with the death wishes and I have to admit I was somewhat disturbed by those purporting to take the high road and wishing the President a full and speedy recovery.
How quickly we forgot the hurt him and his supporters had visited on the most vulnerable and the hurt they yet plan to visit on us. How quickly we forget the victims and those who received no such well wishes or resources for full and speedy recoveries. How quickly we bring the enemy into our hearts.
I wish this man no such healing, but I recoiled at the thought of wishing him from this world. In some ways, it felt right to do so, but I stopped short, though I could not put into words why I felt both ways at once about it.
Wishing death on someone, to me, is not morally wrong, it’s just futile. A wish is not a reality. A wish is just a thought and thoughts come both from us and from outside of us. Thoughts come bidden and unbidden, sometimes understood, sometimes not. We think things we mean and things we don’t mean and those thoughts can lead to action or they can be released to float along back to the void whence they came.
A wish is nothing more than the expression of the emotion and history it was born from. Wishing death on someone speaks more to who both the “wisher” and “wishee” are than about what the universe is capable of or what the future will bring, of which it has absolutely nothing to offer.
Only action can influence an outcome and our thoughts and wishes can influence action, sure, but they will not bring about the desired end alone. But maybe that isn’t the why of the wish at all? Perhaps a wish is just a kind of outlet for all that anger, all that hurt, all that disgust, and that unfathomably deep hopelessness so many of us have been navigating somewhere between these past four years and our entire lives.
When the world hates you, wants you dead, and often kills those who live and look just like you no matter how you beg, reason, or fight isn’t it at least reasonable to see the death of those who incite and justify such cruelty as the only, or at least the most available solution? And when the possibility presents itself through an ironic and almost hilarious turn of events, would you not revel in their fate yourself?
When looked at through a lens beyond morality and through one of human suffering the wish itself is not beyond understanding and those who long for it are not beyond our understanding, but there is something somewhat distasteful about it, no?
The internet and its nests of social media platforms and their promise of anonymity and insulation make it too easy. I worry we say things we normally wouldn’t. I worry we say things we don’t mean to. I worry we urge one another to emotions we might not otherwise feel or express if it weren’t for the bubble of approval and ever-growing radicalism the algorithms place us in.
So, what is right, and what is wrong? More importantly, how do I really feel? I have said the same ugly things I see coming up my timeline. I’ve liked, retweeted, and lent affirming words to those dark wishes. I’ve let myself be dragged along by this dark turbulence and I will tell you it has, at times, felt satisfying, even good, even right and I still leave myself open to the possibility that it is right.
To save 200,000 lives, would you sacrifice one? To prevent the starvation, the mutilation, the indignity, the dehumanization of hundreds of thousands, would you give one? That is how some people see it, and who am I to condemn such a point of view so long as it begins and ends as an opinion and free speech? Who am I to know this is not the greatest good or the justice that the arch of the universe so bends?
I can only decide for myself, and if there is no harm to the world if I wish my dark little wishes and dream of easy resolutions to the pain I want desperately to soothe, then why not? I am, after all, only human and what I want is what any human would, a world where the cruelty makes sense, where great suffering is met with great justice and the righteous always win. I want the satisfaction of an eye for an eye.
Still, I pause, and take note of the claim that when I wish that harm on others, I do something darker and more harmful unto myself. They say the soul becomes soiled and we become what we hate most when we put our hatred to language.
Though I don’t believe in souls, I am conscious of how easy it is to get caught up in your emotions, desires, and need to have the world made right by any means necessary. I know how easy it is to lose yourself before you know you are gone. I know there is darkness in each of us that must be daily kept at bay. So, I ask, what do I do to myself when I wish ill on the living? And what does the desire to see those I’ve decided are “them” say about who I am and who I consider the corresponding “us” to be?
When I wish ill on others, I suppose it says that I am angry. It says that I have found no greater outlet or resolution to my anger. It says I have begun to believe some people are unchangeable and unredeemable and that heir harm cannot be made right. It says that I see their bid to retain power puts all of our lives at risk. It says I am afraid, and when a person is afraid they lash out. They lose rationality. They think and even act in violent and tribal ways. It says I am hurt and sometimes when we hurt we want to see others hurt too.
When I stop to reflect on who I am when I wish others would hurt, I don’t like or even recognize that version of me. I don’t believe wishing the worst on someone makes me a bad person, and I certainly do not think it makes me as bad as the ones who would misuse their power, but I am disturbed by those thoughts. I don’t like what it means for what I believe about the worth of human life and the right each of us has to a certain level of respect and dignity. I don’t like what it means for human redemption and or the possibility for growth and contribution.
Of course, I have my doubts people such as these would ever change and I have further fears for the future should the next four years follow the path of the last. I still cannot, or perhaps will not, bring myself to long for full and speedy recoveries. I simply have no sympathy left for those who would not extend it to the vulnerable ones who suffered before or because of their actions and inactions.
What I would like to do is take some control or at least offer peace to that place in me where those dark thoughts have taken hold. So, I have been thinking of a third path, a place where I can give space to both sides of myself and let my most human emotions and thoughts be free but preserve that sense of optimism in the human spirit and believe if the worth of every life.
For those who have hurt me, hurt others, and hurt the world, I do not wish them ill, nor do I wish them well, instead I am allowing myself a place and the peace of neutrality.
I empathize with those who think their useless thoughts and wish their pointless wishes from places of pain, grievance, and fear. I also give space to those who from their place of protected privilege would extend sympathies to those who have caused great harm but who remain human, and for my part, no matter how the outcomes unfold I will not feel disappointed nor will I feel satisfaction.
I will feel nothing, say nothing, give nothing of myself because the opposite of love is not hate, but indifference, and this is what I choose to extend to those who have used their power to harm and divide, or worse. I offer no wishes at all and no feeling whatsoever for your fate. I leave you to the cold, uncaring universe and watch with bated breath to see how you fare with all the rest of us in such a place.
If you enjoyed this piece, why not buy me a coffee?
Michael Barbaro: You used the word “prudential.” And that caught me a little bit. Because you’re not using a word that conveys morality or faith. You’re saying “prudent,” if I’m hearing that word correctly.
Marjorie Dannenfelser: Yeah. I think actually religious people use that term quite a lot. Because it acknowledges a hierarchy of goods and evils involved in any decision. That decisions of great consequence often involved a blend of goods and bads.
And your job is to figure out where the highest good is found. Which choice leads to the highest good. And that’s the choice we had to make in that moment.
I had never heard of Marjorie Dannenfelser before this interview and though, obviously, her views are as opposed to mine as possible, I am very interested in her views and strategies in politics.
Democrats, Liberals, and Leftist have been at each other’s throats on social media these past months, or, really, these past years and elections cycles, over what is the best way forward to both keep our principles intact and win.
I’ve found myself torn between the warring factions of supporting perfect candidates only or choosing the lesser of two evils. I do not think either strategy is morally wrong per se, but I can see the possible harm both paths can lead to.
If you support less than perfect candidates and ideas progress move more slowly and you are complacent in the harms that candidate and their ideas inflict as well as the norms you reinforce by sending the signal that those harms are okay.
On the other hand, if you only support perfect candidates and ideas then change may never happen and, worse still, the other side wins again and again and greater harms can be inflicted in the short term on a greater swath of the population. Just look at how many have suffered and how much we have lost in just the last 4 years because the left could not unite behind Hillary Clinton.
The upside is that you can (in theory) claim immunity against those harms and, when the change does come there is a higher chance it will come faster, be of greater benefit, and benefit a greater swath of the population than you would get through any other imperfect candidate.
In listening to the above interview with Marjorie Dannenfelser I am struck by how simple, how easy, the choice is for her. She looks at the choices she has in front of her of her, not the choices she wishes she had, or the choices she may have four years, eight years, or a generation from now, the choices she has right now, and chooses what, in her mind, will lead to the greatest good.
I think this is the most realistic and the most effective way not just to vote, but to engage in politics on all levels.
Marjorie Dannenfelser, I’m sure, does not like Trump personally. I’m sure his actions disgust and outrage her, just like the rest of us. I’m sure she had to hold her nose when she cast her vote for him, but she is seeing her vision realized through this choice because she knows what she stands for and she saw how to get there. She is willing to make a hard choice for those she believes are vulnerable and need protecting.
Shouldn’t we be doing the same?
And what are we doing on this side of the political spectrum? We are floundering. We are in a constant state of reactionary politics and reshuffling our focus and principles. We blame each other. We ask too much of each other. We do the enemy’s work for them, and all this outrage, worrying, preaching and putting one another down for not engaging the way we want in politics as we wish it was played is not leading to the greatest good. It just feels good.
It’s also a privilege. To have the luxury step out of the ring and refuse to play or support anything that doesn’t perfectly align with your views means you know that in doing so your life will hardly change at all. There are a lot of people for whom the last four years have not been all that different from the four years before that, and for them the next four won’t be all that different either.
The Supreme Court granted me the right to marry. The Obama Administration gave me health care, a diagnosis, and affordable treatment for a condition I might have otherwise died from. My life is vastly different than I ever thought it would be because people voted and my life could vastly change again if people don’t.
I know Biden isn’t perfect and increasingly I doubt any politician ever will be. The thing we have to keep in mind is the wide-ranging changes to all levels of government, everyday life, and the country’s consciousness simply by him being elected, and that is the greatest good I have to focus on right now because who knows what turns the future will take and what we’ll be facing or what choices we’ll have in another four years.
This is what we can control.
This is what we can choose.
The world right is a scary place right now. Every week there is some new crisis, violence inflicted, some new loss or terror to contend with. The world is a changing place and from day to day both my mother and I, in that vague state of anxiety passed down from her mother, to her, and down to me, have been fighting and failing to find our footing.
In our old world, when we were both so young, before the fabric of political, economic, and social life shifted, our talks never passed the boundary of home life. I was still a child blissfully unaware and she, alone and hardly out of childhood herself, was so busy trying to keep us fed, clothed, and sheltered that she had little time for current events and politics. Even in the rare instance the problems of the world would grow too big to keep out of our home, we still viewed it from such different places in life that neither of us knew what they meant nor knew they meant anything to the other.
Looking back, I don’t remember a single instance in which my mother talked about the news, with me or with anyone else, but then again, my childhood preoccupations and wonders may have distracted me from ever noticing. The only memories I have of the news even being on is one afternoon the livingroom TV was showing the O.J. Simpson trial, and she wasn’t even in the room and another memory with no visual, only a vague mention of Matthew Shepard’s torture and death.
What I do remember of my childhood is all wrapped up in suffering and struggle. I remember being worried about money, about where we would live and whether we would have new clothes. I remember cars that never started, evictions, and arguments. I remember she was gone a lot. I remember so much was up to me: to watch my siblings, to cook dinner, to make sure everything was all right for her when she got home.
And our whole world, our relationship and our dynamic was forged in that struggle and suffering. She had her responsibilities, her resentments, and anger, and I had the work no child could accomplish: being good enough to sooth all the problems a parent has ever had.
All this is to say, even though we are decades from those old days of turmoil and strife, and I am all grown up, and she a few decades more past her own fears and bitter past, I have no idea how to talk to her about the what’s going on around us because none of that has ever mattered or even existed between us.
In the past my job has always been to listen and to comfort, not to join the yelling or argue and in my heart that all I want is what I have always wanted, to make it all okay for her, to give the right answer, to sooth the rage and make up for all the hostility and grievances but just as it was all too big for me to make right when I was a kid, it’s all too big for me to make right now that I’m an adult especially when we’ve spent so little time experiencing the world together.
Even as a teenager, when I had my first brush with community tragedy that terrible April afternoon in 1999, even then, after I’d been released from school early shortly after the Columbine High School shooting, even then we barely touched on the larger implications of how such an event came to happen, what it meant for me, or how life would, or should, change after.
I remember no one was home to greet me when I got there. I remember as soon as I got through the front door of that little one-bedroom apartment (I lived with my father that year.) the first thing I did was turn on the TV. That was the first time I remember watching, really watching the news, and I did it all alone.
I can’t remember which one of us made the call and which one answered. I hold two distinct and equally true memories in my mind, one where I needed my mom so badly I picked up the phone and called and one where she was so worried about me that the phone was already ringing when I opened the door. More than likely it was both. I probably saw there was a message on the answering machine and heard her voice asking me to do what I already longed to.
I watched images of chaos and grief, fear and disbelief splashed across the screen while we talked. I remember recounting the events of the day, of how I knew what was happening and how it was I was home so soon. I remember hearing the trembling in her voice on the other end of the line asking me how I was. I remember trying to make it all right by saying I was okay. It was all okay.
The truth was, I wasn’t okay, but before I could process that I was already making it okay for her. I’m sure that wasn’t her intention and I know that at that moment she was genuinely worried about me and trying her best to reach out, to be the parent I needed but I also know that after our conversation about that day and she never mentioned Columbine again.
There was never a conversation afterward about what happened or why. No one explained to me what those images of terror and grief meant. No one checked in on me a day later, a week later. I never got to cry, to question, or to process.
The same silence met me after 9/11, after Clinton’s impeachment, after every election, after every major political or social event.
I know times were very different back then and not every family had those talks around the dinner table at night, but I wish we had. I wish I had gotten to know the side of my mom that existed outside of our home, the side that existed as a citizen, as an American. I would like to have learned about the world from her. Instead, what I know now I’ve come to on my own by a long journey of suffering, compassion, self-education, and change.
This isn’t to say my mother and I never discussed issues, but they were always presented from her narrow perspective.
I knew about racism from the story of my birth and her parent’s reaction, not from descriptions of history or systematic structures. I learned about the one drop rule through the story of her very nearly giving me up for adoption. I knew she felt the N-word was abhorrent and disrespectful, even between Black people after she learned I’d been using it in school. It was never about what was happening at the moment outside of our home, but always about what happened to her and what she thought.
Since leaving my mother’s home, I have consumed political news and information widely and voraciously. I have grown more aware, more connected, and more radicalized year after year. I have grown to be someone who lives the identity politics my mother has only just begun to grasp. Many affect me personally or touch on some passion or trauma close to my heart.
I know that though we never discussed the greater world in our home, the seeds of my political views began with her. Whether consciously or by accident, my mother raised me to be a kind, open, and compassionate being. She’s been through a lot of hard times. She’s felt the sting of invalidation, ostracization, trauma, and abuse and she’s grown from all of that and given me the tools—both by perpetuating and shattering the cycles that shaped her life—and shaped me into an image both like and unlike her.
Our worldviews and values are as much the same as they are different. I’ve grown up in a different time and experienced more suffering in some ways, and less in others. I’ve loved differently and been loved differently.
I’ve never asked my mother about what was happening in the world when she was growing up or when she was raising us. I’ve never asked her what was changing, what she hoped would change, what captivated her, infuriated her, scared her, and she never told me either. I never knew I could.
Now I wonder, how long have these issues mattered to her? If always, why did we never talk about them? If only now, why? And how am I to travel this path with her as her daughter without dampening the painful realizations, hard work, and painful growth that comes with facing your own ignorance, biases, and complacency?
Now it seems my mother watches the news all day long. She calls me most weekends to vent and lament over the current state of the world. From the moment I answer, I am met with a barrage of updates. The latest Presidential gaff or cruel executive order. The latest school shooting, police shooting, the border wall construction and the kids in cages. She tells about gun control, protests, health care, immigration, police brutality, gay marriage, elections, the President, and the pandemic. She goes on about the failures, the antagonization, the injustice of it all!
This calls always fill me with anxiety and leave me speechless. None of the information is new to me, but the source is. My relation to her and to this news is. While she shares her outrage and her worries, I’m left unsure how I’m meant to respond or engage. She is my mother still, and unlike my friends, my coworkers, or even my wife, I can’t debate her or even share in her fury or fears.
I am not that little girl empty of experience or knowledge anymore. I’m not that little girl trying to work out who she is. And she is not the mother I knew then either. This version of her that is so aware is not one I recognize. This attempt by her to discuss her fears and fury and then to hear mine in turn is not an interaction I know how to navigate.
What am I to do when we disagree? How can I tell her that something she has said has hurt me or made me resentful or angry? How can I ever tell her when I think she is wrong? And when we agree, which, I admit, is more often than not, how am I to respond to her anger and anxiety in any other way but soothing or comforting?
I’m not writing this to blame or to rebuke. This separation between my mother and I is certainly no one’s fault. We’ve both done our best. We’ve both grown and learned and changed only we haven’t done it together and now as the world drags us both along toward dire uncertainty we’ve come together as loved one’s only to find we are not so changed after all.
She’s moved past seeing me solely as her daughter to seeing me as a person in my own right, even as a friend, but I may never be able to make the same progress past seeing her as only my mother.
My wish is not that she would pull away again. To retreat into that secretive and lonely place all mothers hold for themselves away from their children, but that she might only be patient, slow, and understanding with me. For the first time the news isn’t something that happens out there but something that happens to us, in us, between us. I’m having to adapt on every level.
For the first time it’s me and not my mother that is trying to let go, to catch up, to change, to meet her somewhere up ahead in life where I can walk with her hand in hand as a citizen of the world.
Written in response to Memoir and Personal Essay: Managing Your Relationship with the Reader: Week One
This year’s Earth Day falls during a time of great global crises and shared isolation and provides an exceptional chance for reflection on the state of the environment, to accept our responsibility for that state, to face the very real possibility of change, and to seize the chance to save what we have so easily forgotten and callously destroyed.
Since the novel coronavirus began sweeping across nations and citizens all over the world were ordered to stay home we’ve started to see what a world that is being given a chance to heal, a world with fewer humans, looks like.
We’re not driving or flying, oil prices are plummeting, the air is clearing and so are our waterways, and wildlife is returning to areas it dared not venture when humans walked about. The human world, it seems, has to get smaller in order for us and the planet to survive.
My hope is that this time away from the all-encompassing need to work and to consume has not just reminded us of what is important: love, connection, health, safety, life, but also reminded us of what we need most in times of great stress and uncertainty, nature.
Nature soothes us: Walking around the neighborhood, through parks and places far away from people, we find the warmth of the sun and find hope and wonder in the budding trees and flowers blooming. When we do not have each other, it is the trees and wildlife around us that are our closest kin.
Earth Day is meant to be a celebration of this connection to the planet and an annual chance to renew our resolve to a more sustainable way of life, but each year the climate crises continue and model predictions more dire. Every year the water and air grow more polluted, ancient forests are further flattened, and whole species are wiped from existence due solely to human action and inaction.
Humans, as a species, do what we can to the Earth and not what we should for the sake of power and ego. We take ownership, we confine, we reshape and restructure; we alter and we kill because we can. We have placed ourselves at the apex of evolution and determined given ourselves domain over all and granted ourselves the inalienable right to do with this planet what we please and to shape the environment in our own mental image of what human life should be, can be. We’ve been able to do this for so long only because our right goes uncontested.
Now it seems all other forms of life depend now not just on the planet but on the benevolence and mercy of humans. Unfortunately for them, we do not connect ourselves to their plight and survival at all.
We do not understand that what we eat, kill, produce, buy, and throw away affects the water air and health of people and animals who live nations away and people and animals who live generations away too. We do not believe that our actions have an impact on the global ecosystem, nor do we believe our futures are intertwined with the futures of other plant and animal life.
We do not connect ourselves to nature because we have done everything we could to remove ourselves from nature. We’ve pushed nature out and away from us, considering any life or structure to be too dangerous to live near, or too useful not to claim as our own.
We have laid the land flat for our buildings and homes, businesses and landfills. We’ve dammed the rivers and mined the mountains hollow. We’ve pumped oil from the depths and refined and burned it to CO2, released it into the atmosphere, and strangled the natural flow of temperature, air, and current. We’ve punched a hole in the ozone layer and bleached the coral reefs. We’ve taken our power and done irreparable damage with it for the sake of more power and pleasure alone.
We have told ourselves a great lie, and it’s time we faced the truth. The truth is, you are connected by this planet to all life that existed and will exist. Your existence depends on the survival of all the life around you and there is no advancement in technology or amount of pure human will that will change that. If the Earth dies, we die. If the Earth dies, it will be because of our stubborn ignorance and cruel consumption. The Earth and every life form on it depend on all of us and you must internalize this for all our sakes.
The truth is, there is no “Planet B” and there are limits to our power. There is no hero on the way to save us and no miracle will manifest to undo what we have done. We will reap what we have sown in our own lifetimes and in the lifetimes to come. All we can do now is try to mitigate the harm, and even that will take a monumental shift of culture and consciousness. We have to be the heroes, each of us. We have to save one another and ourselves in small ways every day.
This year I am asking all of you to take ownership not of the land but of your small place in the ecosystems around you. Find power in the responsibility you have for that environment rather than in all the ways it can be utilized and monetized. Find your place in nature and resolve to save something in it. Start small. It’s better than no start at all.
Plant a tree. Build a bat house or a bee hotel. Change those old lightbulbs. Turn off the faucet. Buy more reusable products. Carpool with coworkers and friends. Volunteer to clean up a highway or a trail. Make some art. Write an essay. Sign a petition. Advocate, educate, protest, and most of all talk.
Talk to your friends and family about the Earth, about the beauty and wonder of nature, about where life came from and where life is headed. Talk about the damage we have done and do every day. Talk about what can be done and what will happen if nothing can is done. The best way to keep nature fully in our minds is to remind one another. The best way to change someone’s heart is to engage with them.
Talk about how we can take the lessons we have learned these past few months and apply them in smaller ways in the future. Perhaps four-day workweeks and more opportunities to work from home? More days a week that businesses are closed. More days a year we are encouraged to step out of our human worlds and instead to walk through the nature around us and take notice.
It will take courage and imagination but watching us all come together to make drastic changes and to trust in what we are told must be done to stay safe has proven we have what it takes to save this planet. It will take remembering what we have forgotten and doing the exhausting and hopeless work of loving something more than we love power and pleasure. We have to do it again and again, every day, as we notice ourselves falling back into old habits and easier ways of thinking.
We all have to do this because we are all guilty and if I’m being honest, I’m as guilty as anyone else. I eat too much meat. I waste water. I pollute. I forget where I come from. I get lost in the power and possibility of human intellect and forget the importance of the human heart. I forget I am only one link in a chain of generations. I forget that I made of all that has come before me and throughout my life; I am participating in the making of all that will come after.
And shame on me for forgetting. Shame on me for my consumption and for my waste. Shame on me for the harm I cause and the responsibilities I fail to take. Shame on me for my place in this grand pursuit of power and pleasure. Shame on me for the actions I chose to take and the actions I chose not too. Shame on us all.
But it isn’t all my fault alone, nor is it yours alone either. Just as we cannot always see the ecosystems we are connected to and our place in them we often fail to see the cultural, political, and economic systems we are a part of and how we are influenced and even controlled by them. The key is to learn to be mindful of both. Look at the human world and look at the world of nature, realize in many ways they are connected, and in many more ways they are one and the same. It’s a simple ask, but it’s the hardest thing a human can do.
It’s emotionally exhausting enough to empathize with people closest to us but to open our hearts and concern to other species? To future generations? To whole ecosystems? That is beyond the capability of one heart for a whole lifetime, and that’s okay.
Humans have evolved to have a certain amount of built-in selfishness. There is no shame in that. We needed it to get this far, but now it has become our weakness and a formidable one to overcome. Instead of expectation and every one of the nearly 8 billion human hearts on this earth to suddenly expand to encompass the planet, why don’t we ask that each of us just care a little more about the bit of nature that can be found around us?
We won’t always get it right but if each of us can start getting it more right right now then imagine how much better we all will be in a year, in ten years, in ten generations?
Imagine air and water that belongs to everyone. Imagine every animal and natural wonder with inalienable rights of their own. Imagine a world we do not own but one we belong to. Imagine a world not built for us, or by us, a world to share and cherish as a bright and blue gift. Imagine how far we might go if all the human love, imagination, and courage in the world were used for good.
Imagine that every day is Earth Day and eat, consume, build, buy, travel, teach, vote, connect, create, love, live and let live accordingly.
Every night each of us is transported to a place inside of ourselves to live out fantastic scenarios and storylines created within our own minds. We travel to a place where the rules of physics and even storytelling do not apply. The images may be in color, black and white, vivid and lively, or they may be abstract and meaningless. We all dream different thing but dreaming is universal and since the dawn of humankind we have been trying to work out the mechanism and the meaning of these alternate worlds and lives we live in nightly succession.
I never remember when my thoughts and perceptions make the leap the space from the real world outside to the inner one of fantasy but I am one of the lucky—or not so lucky—ones that dream in vivid imagery and emotion and carry the memory of these dreams into my waking life. My dreams are so real sometimes that I wake up feeling confused about who and when I am. I am shocked even to find that I have a different life than the one I just woke from. Sometimes I wake relieved. Sometimes I wake and mourn a fantasy I never wanted to wake from.
I am disturbed not just by the visceral nature of my dreams but by the content too.
I dream of old friends and lovers seeking the answers and closure I never had. I reenact my worst self sometimes the way it was and sometimes in ways that are warped or exaggerated to highlight some shame or regret. Most nights I play myself and the scenes are shot from a first-person perspective and sometimes the camera pans out and an actor is mercifully generated from my mind plays me to provide distance from pain and shame.
My rational mind cannot follow the haphazard way the dreaming mind pursues its answers. I cannot even guess at the answers it seeks by its seemingly random choice of setting, situation, and character. Some nights the old antagonists, deuteragonists, and love interests don the faces of present friends and loved ones, but most nights I do not even recognize the actors it asks me to rehearse these scenes with.
There are nights too when those I dream of from the present wear faces from long ago. They are their worst selves this way I am mine. We deceive and hurt one another with unprecedented cruelty and callousness. They say dreams can foretell the future. They say too that dreams reveal a truth we cannot see in ourselves or in others. I wake suspicious of them and of myself. I wake up hopeless that the past will always be repeated and that no matter how I try I will always be this way and the proverbial “they” will always that.
My mind and memory mix and meld the past and the future, my dream mind understanding each as who they are regardless of setting or disguise, as I play out my anxieties and desires as a loop of choices and mistakes I’ve made and will make.
Of these future tense events, I tell myself they would never come true. I could never want this or them. I could never do or think that way, but I wonder too. I am surprised by just how mistaken my unconscious mind is about what I want or what I might do, or maybe I only feign surprise?
I honestly do not know, but where else, how else, could these images manifest if not from some black and hidden part of me? What I dream is a truth told by fiction. What that fiction provides is distance enough to accept for a time that there exists darkness in me. Some put there by others and some that is made entirely of me.
I wonder at this darkness. I try to reach it but it seems buried beyond my reach or want to plumb, buried so deep by upbringing, propriety, and self-image I cannot bear to even try. What might exist there? What other truths or predictions may arise out of that devious and lewd place? How far down does the darkness go?
Those nights I dream of old flings and future affairs, I wonder what it means. Do I still long for those I’ve left behind? Would I have betrayed the one I love now so easily? Those nights I dream of grave danger, I dream I am running, running, running away from a threat so big and so fierce I cannot see or stop to comprehend it. Does that make me a coward at heart? Would I never stand and fight?
I dream of lives so different from my own I hardly recognize myself in them. Where do these new personas originate from? I dream of places I’ve never been to and of people I have never met. I dream that the people who know me either do not exist for me or do not at all, I cannot tell. Do I wish I were someone else, somewhere else, do the people close to me in this time and life mean so little to me, really?
As if future horrors were not enough a few nights a year, and during times of stress, a few nights a week, the dream maker makes for me a nightmare of what I fail to repress, retellings so real I may wake up to real pain and wet tears. Why must the mind bring them up again and again? The emotional self has suffered enough. The rational self has accepted it all. What more can be gleaned from such terrors?
There are no answers to these questions. The parts of me that produce these dreamscapes are ancient and unknowable to me. They evolved eons ago and exist in places I cannot go. The symbols and metaphors aren’t decipherable. I dream I have lockjaw, that my clothes won’t stay on, that my hair is falling out, that I am falling down, that I can fly, that someone is chasing me, that someone is breaking in, that I cannot see my wife’s face, that no one can hear me, that I am being killed, that I am dead.
From the distance of story-telling and narration, I may be trying to say that I need to let go or to rethink. I may be afraid of being seen and I may long to be truly seen. These dreams could mean I am trying to escape or avoid some horror or desire either in me or in my past. I may be feeling unheard. I may be worried about losing my sense of power or I may just be dealing with low self-esteem and a preoccupation with my appearance. I may be trying to face my greatest fears or I may be trying to remind myself of unfinished business.
It might be nothing at all. These stories I make for myself might be made of old pieces of my life found strewn about the cutting room floor of my memory and colored by the emotion of the day. It may be nothing but a way to occupy my mind while daily maintenance is performed and upgrades are installed.
But my gut tells me otherwise. Not every dream may be the dark revelations of the subconscious, nor are they made wholly of excess emotion and dregs of the day’s thoughts. I do not think that the dream makers in us are really so far away as they feel and the meaning might be simpler to discern than we imagine.
Perhaps our dreams are only one of the many mediums we have to interact with and understand ourselves. Perhaps, we are our own best friend and worst enemy down to our subconscious and perhaps because we know ourselves best of all it is in this place, a world both of our own creation and out of our control that we conjure up the worst of ourselves and for ourselves simply because we can.
The interpretation, therefore, may not lie in the dream’s content but in the kind of dreams we choose to construct. What plays out in the course of every night may have less to do with that darkness in you, the secrets you try to keep from yourself, or your greatest fears and may have everything to do with just how you feel about yourself.
It may be that a nightmare is only a way of punishment or a bit of tough love and a dazzling illusion of peace, pleasure, or prosperity a gift or a great and merciful lie and a night of dreams so real you don’t just dream them but live them may have nothing to do with how you feel about this life you have been given and more to do with the distance between your inner life and your outer reality. It may mean signify nothing more than how rich and deep the relationship you have with yourself is.
This post was written in response to the WordPress Discover Prompt, Day 17: Distance, but in the course of exploring the concept I happened upon something else entirely. I hope it still counts.
If you enjoyed this piece, why not buy me a coffee?