Leaves from our red oak appliqué the lawn. The fall-blooming plants have lost their flowers, save for two azaleas. Butterflies and moths have been visiting the azaleas since the butterfly bushes started dying back. Above, I see woodpeckers from time to time. They dance up and down the trunks of our sweet gums. I’ve seen a slate-colored junco on two occasions. Both times, he was sneaking over the fence to take a dip in one of our birdbaths.
We have three birdbaths. Before we moved to this house, I never paid attention to birds, at least not close attention. The birdbaths came with the home, a gift of sorts from the previous owner. The birds who visit our yard regularly were also a gift. Shortly after moving here, I decided it was time to do something about my long-held desire to identify the birds I saw. I got my wish when I was given a set of bird flashcards and a pair of binoculars. The View-Master effect of the binoculars made the whole world pop to life. I couldn’t believe such wonder existed right outside my door. I’ve spent countless hours not only watching birds but also examining trees, the sky, squirrels, the texture of all manner of surfaces, the shrubs at the back of the property that lean into each other like old friends, and so on.
One of my favorite birds is the junco. I remember them from when we lived here years ago, before we moved away (and subsequently moved back). They frequented the yard at our first house. I remember that time fondly. My trauma was about half what it is now, though those earlier traumas were closer to me, more deeply imprinted, less smoothed by time, effort and consideration. Now, the most recent traumas are the jagged ones. They jar me from sleep at night and intrude on my waking hours.
I’ve been fighting for a long time, for myself and for others. For the most part, I feel unheard and unseen. I am frustrated by the lack of literacy around trauma, oppression, discrimination, and other issues that profoundly affect people’s health and well-being. I am frustrated that neurotypicality is imposed on all levels and that social constructs are mistaken for truths.
The birds help. Immensely. They don’t give me answers, and that’s the whole point of paying attention to them. They allow me to stay on a little island called here and now, unaffected by what’s happened in my past and unburdened by the extremely difficult work of being heard above the din of prevailing beliefs and values.
In these small slices of time, there is nothing wrong, nothing at all. The world is wings and air, and I am part of it.
I used to think to be not alone meant / never having to walk through the high wheat / or struggle in the water.
— Allison Seay
I am standing in the high wheat. Field with Sheafs, by August Haake (1911–1914), oil on cardboard. Image used in accordance with U.S. public domain laws.
When I was a teenager, my mother’s best friend came over one night after a long absence from the weekly happy hour my mother hosted. When she arrived, the friend was serious, even somber. She stayed just long enough to tell my mother and their mutual friends that she wasn’t coming back to the group because she had quit drinking.
Couldn’t you just come and not drink, someone asked, flummoxed by the surprise announcement.
No, she said. And I can’t be around any of you again, not while you’re still drinking.
She explained that being around people who drank would jeopardize her recovery. She couldn’t be in that physical or psychological space anymore. My mother didn’t understand, or maybe she understood but didn’t accept her friend’s decision. This was, after all, the woman who had been there through everything with my mom. They’d known each other for more than thirty years. This woman even picked out something for my mother to wear to my father’s funeral. I remember her bringing a selection of outfits home for my mother to try on.
Nothing black, my mother had insisted. I hate it when widows wear black at funerals.
Her friend complied. She fanned out half a dozen wool and satin pieces in beryl blue, emerald green, and ruby red—the rich colors of a painted landscape. My mother sat slumped on the edge of her bed, barely present.
Get up and try these on, her friend coaxed.
Her concern for my mother was evident. It was one of those defining moments in a friendship. Through death, they had become even closer—friends for life, or at least that’s what everyone thought at the time.
After her announcement, my mother’s friend rose and walked purposefully through our paneled den, the one with the mirrored wet bar my father built before his death. She reached the thick cedar door and let herself out.
Empty Space
There are many differences between the alcohol recovery model and the mental health recovery movement. Still, situating myself within the recovery movement feels similar to leaving everyone and everything I’ve known, the way my mother’s best friend had to all those years ago. For one thing, there isn’t a recovery-oriented support group in my area. I don’t feel comfortable at local support groups that follow the disease model, suppress or dismiss research that challenges that model, treat the DSM as authoritative, teach people that medications are the best and often only option for managing their assigned illness, accept funding from pharmaceutical companies, and act as mouthpieces for those companies.
I’ve tried to take part in those groups—to create a space for myself and my view there—and I’ve been met with everything from dismissiveness to outright disdain. For me, they are not places where healing can occur. Rather, they are culdesacs that lead to feeling, and learning to be, what Lewis Mehl-Madrona describes as “forever ill.” In Coyote Wisdom, he writes:
On the down side [sic], support groups for particular illnesses sometimes encourage stories that keep people sick and support them in seeing themselves as ill. People who absorb these stories can come to define themselves as forever ill. A healing story needs to challenge their membership in the community of sufferers.
In my experience, label-specific support groups don’t tell healing stories or encourage peers to create those types of stories for themselves. Instead, I’ve heard group leaders refer to their own mental health labels as “awful,” “terrible” and “horrible.” I’ve seen peers internalize that language and mindset. This does an incredible disservice to the community and is, in my opinion, contemptible. I won’t set foot in those groups anymore because of the culture of self-loathing they cultivate.
Recently, I ran into someone from a group I used to attend. Though it was wonderful to see him, I wasn’t sure how to pick up where we left off more than a year ago. My DSM diagnosis has changed since I attended that group, but that information isn’t important because the DSM isn’t an accurate or helpful classification system. Whatever label I do or don’t have is just that: a label. My thyroid disease has also been addressed, but explaining how that affects my well-being is taxing for even the most attentive listener. So a silence opened in the conversation, like a crevasse in brittle ice. I stood on one side, he on the other. I care about him. I also care about myself and need to do what’s best for me, which includes walking purposefully on my own path, the one that leads to healing. Now I understand how space forms between people, like it did between my mother and her best friend.
Hello, Out There?
There are like-minded people in my area, and I’ve had a difficult time connecting with them. Often, when I reach out, I don’t get a response. I know survivors experience frustration, exhaustion, burnout, and a host of other issues related to trying to have their voices heard while also caring for themselves. Nobody in the recovery movement owes me anything, and I don’t want to take time or energy away from their important work. At the same time, it’s hard to go it alone when I know there are others in town who feel the same way as me. I like to imagine us coming together in friendship and shared purpose. (That’s my internal idealist talking. I’m trying to find my internal realist, but so far she’s eluded capture.)
I’ve had difficulty with recovery-oriented online support groups as well. Members seem to spend an inordinate amount of time fighting with one another, suppressing individual voices, and creating caustic environments in other ways. It’s exhausting to take part in those groups. I often come out feeling worse than when I went in. Online groups also tend to share a great deal of misinformation about mental health, most of which goes unchecked. There are perspectives and opinions, certainly, and those should be respected. But sharing inaccurate information doesn’t help anyone.
Whether in person or online, it probably doesn’t help that, in addition to being an idealist, I’m sensitive, introverted, and have a low threshold for interpersonal strife—either experienced or witnessed. Still, I’m here. I want to speak, write, and act in accordance with what I value, which is a model that promotes well-being over ill-being, individual approaches over generalized protocols, and healing over harm.
I’m over here in the high wheat, in the water. I will stay here even if nobody joins me.
Aside: Reaching Across the Crevasse
One way the mental health recovery movement differs from the alcohol recovery model is that there’s really no room for leaving anyone behind. That silence I felt when talking with my friend recently? I decided to try to connect with him to the best of my ability. He’s my people. Everyone with lived experience is my people, and I am their people. I can’t forget that. While I do need to distance myself from the disease model and the “therapeutic” frameworks that fall out of it, I don’t need to distance myself from anyone who’s open to where I am coming from, even if they remain on the other side of the crevasse.
In part, I told my friend that I am looking at well-being as opposed to ill-being these days, and at a mental health model that supports everyone (regardless of DSM label or lack thereof) having the tools and supports to live meaningful lives. I added that I believe we can all heal from trauma, adversity, and distress—which comes in many forms and touches most of our lives in one way or another. Finally, I said that I don’t think the medical system (physical or mental) goes far enough in not just treating illness and ill-being but in showing us ways that we can thrive and experience well-being.
I guess that’s my new elevator pitch, though it’s a little long. I’ll work on it.
In all chaos there is a cosmos, in all disorder a secret order.
— Carl Jung
This morning, my chihuahua threw up on me in bed. I was curled up in the fetal position, and she was behind me with her chest against my back. You could say she was the big spoon and I was the little spoon, as preposterous as that might sound, given that I am approximately eighteen times her size. But there it is: big spoon = chihuahua, little spoon = human.
Understandably, being woken in this manner led me to believe I might not be in for the best of days. As I took care of my dog, got myself cleaned up, and cobbled together all the linens that needed washing, I felt defeated before I’d even brushed my teeth. Then my centralized pain set in, along with intestinal distress because I dared to eat out yesterday afternoon. As if that weren’t enough, I felt like I was being strangled. Yesterday, my new thyroid surgeon examined the scar on my neck from the thyroidectomy that my old thyroid surgeon performed last fall. He needed to assess how much scar tissue was present. Turns out, there’s a significant amount of scarring, and manipulating the area has made it extremely tight and painful today.
I needed to get it together, and fast. My first session with a holistic therapist was scheduled for noon. This meeting was important to me. I didn’t want to arrive at the therapist’s office sweaty, whiffling, and redolent of dog vomit. I needed to be lucid, solid, maybe even likable. (The last one is always a longshot for me, but I hold out hope with every new interaction.)
I made it to the session with my pestilent body in tow. A sack of pain I was. The therapist put me at ease by pointing out her Carl Jung action figure and saying, Not everyone has one of those.
They don’t, I thought. But they damn well should.
She also had a stuffed Yoda on her desk. He was wearing spectacles. I should probably show her my bright orange, 3D-printed Yoda head at our next meeting. I don’t have any Jung tchotchke to share, but I do feel Jung at heart, so at least I have a pun lined up for next week’s session.
The therapist knew things were serious when she began charting my immediate family, and I was in tears by the time she asked me what my father’s name was. I would have totally lost it if she’d asked my mother’s name. (It was Merry, which is heartbreaking considering how much trauma she was born into and lived through. Given her life circumstances, my mother’s name was a cruel, impossible demand—a mirthful adjective that would never find its occasion. What were my grandparents hoping for, beyond hope, when they fitted her with that albatross?) In short, I wasn’t able to mask my physical or emotional pain, and that made me feel as vulnerable as a fledgling swallow leaving the nest for the first time.
The therapist asked how I was feeling. I told her I was a burning tumbleweed careening down a hill, setting the countryside on fire.
She seemed to understand.
I asked her if she thinks there’s more merit to the diagnosis of post-traumatic stress than other DSM diagnoses. She said she doesn’t give a hanging chad about diagnosis. She only cares about hearing and seeing the person in front of her.
You are not a diagnosis. You are a human being, she said. What I’m hearing and seeing is you.
I tried not to cry because I don’t want Therapy Dana to be someone who is weepy throughout an entire session. But I’m not sure I’m in charge of who Therapy Dana is or isn’t, let alone what she does and doesn’t do.
I chose the Jung quote above because it makes me think about the DSM and its litany of disorders. The DSM is a dead end that never leads back to order. How do you make your way out of that book once you’re in it? My therapist says you have to stop looking at the disorder and start looking at what will help you heal.
I don’t always know where to cast my gaze, but I’m looking.
If you cannot find it in your own body, where will you go in search of it?
— The Upanishads
My freeze response this morning was kind of like this, but without all the great scenery and gentle animals. A Fairy Tale, by Arthur Wardle, oil on canvas. Image used in accordance with U.S. public domain laws.
This morning, I felt like a length of fossilized wood, my body having turned to stone. I was lying in my bed, white sheets a blanket of fresh snow glinting near my mineral-laden bark. Every time I imagined getting up, my torso and limbs tightened. I was stuck. I wasn’t able to move for more than an hour.
This happens sometimes. It’s one of my responses to trauma. Most people have heard of fight and flight, two physiological reactions to threats and perceived threats. There are two other, related responses: freeze and fawn. Many people who’ve been traumatized have some combination of these four responses. I’ve experienced all four, but my primary responses are flight and freeze.
Of the two, I like flight more. Much more. At least with flight, I’m in motion. I feel like I’m getting away from a threatening situation, my body moving, machine-like, under its own direction. Freeze is worse because I have all the emotions associated with flight, yet I have to experience them wherever I happen to be when the freeze response starts. Inside, I might be saying, “Just move. You’ll feel better if do. Start with a muscle, any muscle.” Yet I can’t move. I can’t speak. I can’t even think properly because my limbic brain has sand bagged my neocortex, which can only watch on, enfeebled.
You wouldn’t have known what you were seeing if you had walked in on me this morning. You would have seen a woman in seeming repose staring at a ceiling fan, its faux-wood blades smearing with soothing regularity.
Aside from the discomfort of the freeze response, I hate freezing because it’s triggering. The first time I froze was when I was thirteen years old and my father’s best friend began molesting me. I also froze in 2009 when I was sexually assaulted. Powerlessness, shame and despair are associated with the freeze response. It’s no surprise that people who freeze when being molested, raped, and sexually assaulted have higher rates of post-traumatic stress than those who don’t. There’s more self-blame associated with freezing than with the other responses to trauma.
I had physical symptoms this morning, too. A migraine. A tinnitus flare-up. Burning mouth syndrome. These issues, along with my freeze response, were my body’s way of dealing with distress I experienced yesterday. Along with three other psychiatric survivors, I was invited to share my account of abuse within the mental health system with a local healthcare organization. As I listened to the other women’s stories, I felt like my heart was being fed into a meat grinder, stuffed into a casing, and sewn back inside my chest. Those are the strongest, bravest, most intelligent people I’ve had the pleasure of sitting alongside in a long time. The day took a toll not just because I shared my story, but because we shared our stories. Nobody should endure what we and so many others have endured. Nobody should have to live with the trauma that led us to seek care or the additional trauma that seeking care can lead to. Nobody should have to face the very real risk of being retraumatized every time we tell our stories in the hope that healthcare might improve, that others might understand us, and that we might be able to speak and write our way back to life.
Though I still feel crystalline, I am moving, albeit slowly. I’m writing slowly, too, with my fossilized mind.
Everything I need to know is in my body and always has been. The body is a great teacher, and I am trying to learn from what it is telling me rather than vilifying it. The more I can see why I am freezing, as opposed to resisting the response, the more I am able to see what my body wants me to pay attention to. Today, I am paying attention.
Throw roses into the abyss and say: “Here is my thanks to the monster who didn’t succeed in swallowing me alive.”
— Friedrich Nietzsche
The Roses of Heliogabalus, by Lawrence Alma-Tadema (1888), oil on canvas. Image used in accordance with U.S. public domain laws.
I am alive, despite having experienced trauma for years. You could say trauma is my monster, a hydra that’s reared various heads over five decades, from infancy into middle age. Sometimes all the heads appear at once, like a giant air balloon tied to another, identical balloon—and another and another—a train of memories and flashbacks as real as the window I’m looking through now at the world beyond. But there’s never glass between me and the trauma, not a single pane. I meet it with no shield and no weapons.
Nietzsche says we can’t live as the vanquished. We have to live as the victorious. To do this, we must show our thanks to the monster for not knowing how to devour us. We must throw roses into the abyss. For him, the monster is what lies within us. For me, the monster is both internal and external—and never exclusively one or the other. A thing happens. As a sentient being, I respond. Now the “thing” is within me, kneaded into my response, often long after it has raised its tail and returned to its bottomless lake. This works in reverse, too. As a sentient being, I can’t perceive anything that happens without being informed by my lived experience. The external is never simply external, and the internal is never simply internal. Within is without and without is always necessarily within.
Trauma starts outside us, but it twines its way through each of our two hundred six bones, ninety-thousand-mile nervous system, and more than six hundred forty skeletal, visceral and cardiac muscles. The sequelae of trauma are significant and can include disruptions to nearly every system in the body, behavioral and cognitive changes, high rates of retraumatization, changes in our core beliefs and values, difficulty with living a “normal” life, and much more.
So the monster is not just internal. It is also external. And the two are perpetually engaged in a simple but exquisite water dance. For me, throwing roses at the abyss performs three functions. First, it’s a way to honor the parts of me that have worked together to survive. Second, it’s a way to begin forgiving the monster that is trauma. And third, it’s a way to bring greater presence and beauty to my past, present and future—even if trauma continues to be there, hissing in the margins.
I am alive, and this site is where I throw roses into the abyss. Let them fill the chasm.
I intended to write a piece on poetry yesterday, but instead I experienced a tear in my retina. Right eye. Noonish. I saw white lights like fireworks, followed by a hovering gray blob that obscured my vision. It was roughly the shape of an acorn cap or a winter hat with a fuzzy ball on top. An ophthalmologist at KU Medical Center saw me right away. He looked deep into my vitreous gel with a fancy headlamp that made him look like he was about to go spelunking and exclaimed, I see the acorn in your eye! I thought he was making a joke, but apparently he could see a bundle of proteins torn from my retinal lining floating in the gel.
Why does the poetic image communicate faster than other forms? A few years ago, I asked this very question on Facebook and then proceeded to answer it myself. How annoying of me. My answer was as follows:
Arthur Koestler has an interesting theory. He says poetry requires thinking on a third plane, a kind of “bisociation,” meaning perceiving a situation or an idea in two individually consistent but habitually incompatible frames of reference. This bisociation disturbs our patterns of thinking/feeling and causes a crisis, which requires a third plane of thinking/feeling to arise, one that is antithetical to but that does not negate the strife of the two.
Since this moment of entry into the poem is a moment of crisis, I would argue that we respond to the crisis the way we are hard-wired to respond to all crises—as quickly as possible. Our entry into the poem is similar to pulling a hand away from a scalding object before realizing on a conscious level that the object is hot. It’s instinctual, a survival tactic. Perhaps bisociation in poetry works on this level as well—because of the crisis the poem presents, we move swiftly to a different mode of thinking/feeling that allows us to enter the poem without completely fracturing our identities, without obliterating our ways of seeing and moving through the world. Bisociation is a way of surviving the poem, of seeing the world as we experience it on a day-to-day level, then seeing the world of the poem itself, then seeing a plane on which to stand, one that straddles the two and gives the reader a place to exist, to breathe.
Perhaps this is why poems work on us so quickly, why the image communicates faster in poetry than in other forms of writing. Precisely because poems put us in crisis.
I removed that post from Facebook years ago, but I stashed it in my poetry files. I came across it today and appreciated it as one way to understand how poems work. I also appreciated my former self for leaving me this trace. It could prove useful when people ask me what poems are, how the mean, and under what conditions they operate.
If you look at a vertical sagittal section of the human eye, you are supposed to see something that resembles a camera. That’s not what I see. I see an angelfish without the fins. I’m sure this says something fundamental about me. The watery fish in the head. The brain home to an aquarium. The two specimens that cannot swim, that cannot escape, that do my bidding, that are forced to document the production.
In his poem “Trace,” Eric Pankey writes: To occupy space is to shape it. / Snow, slantwise, is not white / But a murk of winter-black basalt. / In the gullied, alluvial distances, / On the swallow-scored air, / Each erasure is a new trace.
Having a torn retina is not without its consequences. I feel like a mean girl punched me in the eye. Maybe at a bar. Maybe after I looked at her the wrong way. Maybe after she mistook the fireworks in my eyes for something I never intended.
If you look closely enough at a poem while wearing a headlamp, you can enter its recesses and observe the detail held within its vitreous gel. What drifts and where. What has lost viscosity with age and use. What holds fast. But when you occupy the poem, you change it. We change things by looking. There is no way around this.
When I told my husband about my retina, he asked if reading poetry might have caused the tear. I said poetry had no bearing on what happened. He seems to think poetry leads to disaster. I’ve tried to tell him for years now that we all lead ourselves to disaster, with or without poetry. Poems simply document the path from cradle to grave; from point of entry to point of no exit; from one dark, craggy landmark to another.
I grew up eating okra, which my mother breaded and fried. I never knew until I moved to Kansas City and bought a bag of frozen okra that it was hairy on the outside and slimy on the inside. I didn’t know the seeds were soft and moved within the mouth in an unsettling manner, avoiding the tongue and slipping down the throat. Okra and I parted ways after our tryst in the frozen food section of the Piggly Wiggly at 51st and Main, but I see it sometimes in gumbo and imagine what we might have become if we had stayed together all these years.
I feel like I’m in a car driving down a dark road, just two headlights between me and the black world.
I read a poem today that was so good I had to stop reading poems. It wasn’t about okra. It was about family. It was one of those poems that makes me cry and pace and ultimately climb the stairs to the main bedroom, at which point I consider the unmade bed and its implicit invitation to ride out the rest of my day there in the disturbing drift of silence and synthetic down.
Now I’m sitting at the computer wondering what comes after silence. I looked to the moon for an answer, but it seems to have vacated the sky. I don’t trust this level of darkness.
My husband will be home soon enough to invade my senses in the best or worst of ways. My tongue is already burning. My arms tingle. I don’t know if my body will accept or reject the presence of another human being in its vicinity.
There are not enough light bulbs to illuminate this room. I feel like I’m in a car driving down a night road, only two headlights between me and the black world. But I am not moving. I just keep staring at the same two monitors and, behind them, the same set of bookshelves—one shelf sports a thumb piano, the other a rusted monkey with articulated arms and legs.
Maybe I want poems to be pop-up books or choose-your-own-adventure verses. Maybe I want them to be origami. You would buy them flat, and the poem would be revealed as you folded the paper into the proper form.
I wonder if I could sauté okra in water and if I could learn to like it that way, if I could ever eat it without thinking of my mother. I wonder if my husband could lasso the sun and place it on my desk like a lamp. If not, maybe he could take me to the lighting section at IKEA. I could stand under all those fixtures and pretend to be Cinderella at the ball. Someday I will make my own light, like the stonefish or the false moray eel. I will be the bright thing in the shadows.
My CPU warms my feet. The heat makes me think something is curled up next to me, a small being in need of comfort.
I lost my favorite corduroy pants. How does one lose pants? They are big, and it’s not like I keep an untidy home. It’s also not like I leave the house with pants on and return with no pants, except in dreams. I lost this very same pair of pants in a recent dream, in fact. Actually, they were stolen by a plasma physicist from The Big Bang Theory. I woke comforted by the thought that the pants were safely folded once and hung on the appropriate hanger in my closet, loosely filed between my capris and my denim.
People in the poetry world are pressuring me to use the terminal comma. I’ve started using it haphazardly and am now living between two worlds.
I have resorted to wearing leggings today. Brown velour leggings. Someone should break into my home and arrest me for this fashion infraction. It’s not like I have a lot of things here with which to cover my legs. If I lose the leggings, I’ll have to wrap myself in tin foil. Then I might as well just put myself in the oven and get it over with. I could feed a lot of hungry people.
I have a woven dress that I am wearing over the leggings. The blasted thing is pilling. I hate pills on fabric. They speak to abandonment and chaos in ways I find unsettling.
When I talk to people these days, I become giddy and inarticulate. Others’ sarcasm is a strong wind my mind braces for, and it’s taking a toll on my ability to focus, reason and communicate. This is a complaint about my mind, not others’ sarcasm. I once watched a movie about a father, his daughter, and their horse. They lived in Nebraska or some such ugly country. There was little dialogue in this film. Just the three characters and the fourth, unseen character, which was a strong wind. It was relentless. It made walking from the house to the barn like the walk of Sisyphus. I once read that wind can drive a person mad. I don’t doubt it.
Last night, I giggled for a while in bed then woke up hours later with my legs twitching wildly. I’d had a dream about sharing my home with an uncaged hamster. My days consisted of picking up turds. Here a turd there a turd, everywhere a turd, turd. My home had four stories, all connected with steep ramps instead of stairs. Going down was fun, it was all sliding and WHEEEEEEEEE. Going up, I had to wear cleats or else I would slide back down, again a Sisyphus type of situation. It didn’t help that I sometimes polished the ramps with Mop & Glo. I don’t know who I am in dreams, certainly not someone with common sense, but at least I keep a clean house.
I blame the twitching on all the junk food I ate. Now I am punishing my legs with brown corduroy tights. I hope it teaches them a lesson.
People in the poetry world are pressuring me to use the terminal comma. I’ve started using it haphazardly and am now living between two worlds: world in which readers are intelligent enough to recognize simple lists without the crutch of punctuation and world in which readers must have simple lists spelled out in no uncertain terms lest interpretational disaster ensue. I feel like a Flying Wallenda, perched like a bird on the wire between two high rises.
I can touch door handles and other surfaces in public without much concern.
I can go out during flu season without worrying too much about contracting the flu.
I can read about the recent resurgence in measles without feeling alarmed. After all, the measles vaccine is not contraindicated for me, and I know my body has mounted an immune response to the disease.
If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.
My health status never goes from relatively normal to life-threatening in a matter of hours.
When I take antibiotics, they work quickly and I only need one round.
I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.
I have never been on prophylactic antibiotic therapy. I don’t even know what that is.
I don’t have to routinely take medicines such as prednisone that weaken my bones and put me at greater risk for osteopenia and osteoporosis.
I don’t have to wonder what comorbidity might be lurking just around the corner and if it will be a noninfectious condition, a malignancy, or an autoimmune disorder.
I have never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.
For me, boosting immunity means popping more vitamin C or Airborne. I have no idea what immunoglobulin is or why it’s essential to the human immune system.
When I attempt to eat out, I don’t have to think too much about how long items are left on buffet tables or how well food is washed and prepped by food handlers.
When I am out in public, I don’t have to worry when people cough into their hands or without covering their mouths at all.
I can be sure that, when I go to classes, movies or restaurants, I will find a place to sit in which I am free from issues that exacerbate my breathing problems, such as perfumes, fragrances and cigarette smoke.
I know I won’t have to pass on social activities because they would put my health at risk.
I know family gatherings won’t pose a threat to my health, even if young children are present.
If someone I love is in the hospital, I don’t have to think about when I can visit, how long I can stay, or other health considerations. I can fully focus on that person and his or her health needs.
I can attend school, have a full-time job, raise a family, and engage in recreational activities without also having to manage the many conditions that would affect me if my immune system did not function properly.
I can leave meetings, classes and conversations and not feel excluded, fearful, attacked, isolated, outnumbered, unheard, held at a distance, stereotyped, or feared because of my immune system.
If I pick up a magazine or watch television, I will see images that represent me and my experience of my health.
I never have to speak on behalf of all those who are immunotypical. My thoughts about my immune system can be my own with no need for political alliance relative to my immune function.
My actual and potential contributions to society will not be challenged because of my immune system.
I can go for months without thinking about or being spoken to about my immunotypicality.
I am not identified by my immunotypicality.
I won’t lose friends who can’t relate to what I am going through, who think I am exaggerating about my symptoms, or who just can’t deal with having a friend with my health status.
I know I won’t be discriminated against by employers who neither understand my condition nor have the desire to provide a reasonable accommodation, despite the legal mandate that they do so.
I do not have to be afraid that, when I talk with others about my health, they will suggest unsolicited supplements, dietary approaches or exercise programs.
I will not be told by friends, family, and even uninformed members of the medical community that my condition is really just a psychological problem such as anxiety or depression.
I know nobody looks at me and makes assumptions about why I appear to be ill (or well), or why I am too thin (or too heavy), or why I am not fit (or manage to stay fit despite my illness), or why I do (or do not) eat what I do (or do not) eat.
I don’t have to explain why I have a lingering cough, why I might sometimes need to wear a mask in public, or why situations and settings that are safe for others may not be safe for me.
Because I have never had to wear a mask in public, I have never been asked to leave a public place because the manager or owner of the establishment believes I am putting others at risk, when in fact the mask is to protect me from the pathogens others carry.
I don’t have primary immunodeficiency, so I never encounter people who make the assumption that, despite the condition being genetic, I somehow brought it on myself through my diet or lifestyle.
People aren’t embarrassed to be seen with me because of my health status.
When I talk about my health, I can be certain that friends, family, co-workers and others will not become uncomfortable and change the subject.
My partner doesn’t suffer from undue stress and hardship because he or she is my primary or only caretaker.
Nobody tells me I should feel lucky to have primary immunodeficiency because it means I don’t have to work or accomplish anything during the day.
My doctors have seen a lot of patients who are immunotypical. This means I am not put in the position of having to educate them about my immunotypicality, since they are already familiar with it.
When I present in a health crisis at the emergency room, I am given prompt medical treatment, not told I am merely having a panic attack.
Since I don’t have primary immunodeficiency, I am never called belligerent when an emergency room resident refuses to believe I have the condition and I am forced to insist that I do.
I’ve never had the experience of being misdiagnosed over and over again throughout my life.
I don’t have old misdiagnoses in my medical record that can’t be removed without a great deal of time and effort on my part.
I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.
I don’t have to face insurance companies that must review coverage for my life-saving therapy before that treatment is approved; that sometimes make patients go off their therapy for months in order for those patients to prove they still have the condition; and that sometimes deny therapy because they don’t feel the patient is ill enough to warrant it, despite documentation to the contrary in the patient’s file.
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I live with common variable immunodeficiency and wrote this piece for Primary Immunodeficiency Awareness Month. It takes as its jumping off point Peggy McIntosh’s 1993 essay “White Privilege: Unpacking the Invisible Knapsack.”
My husband plays a lot of video games. That’s not too surprising, since he used to be a video game programmer. One of his favorite types of games has a “quest” theme. In the quest game, the hero is on a mission to accomplish something epic. The entire game is built around the hero’s ability to complete his or her challenge.
But in a capitalistic society, it seems to me that there are many more ways to deal in living beings—ways that might not seem obvious until they are deconstructed.
I realized recently that I am on a quest in real life. My “epic” goal is twofold: 1. I want to heed my calling to help others; and 2. I want to integrate my ethics and values—and the faith from which both stem—into my professional life.
This isn’t as easy as it seems, at least not for me. Part of the Buddhist Noble Eightfold Path addresses “right livelihood.” Dealing in living beings is listed as one way in which people can harm others while earning a living. For this reason, dealing in living beings is to be avoided for those aspiring to live their lives according to the path.
I’ve been sitting with the idea of dealing in living beings as it relates to truly helping others. Raising animals for slaughter and engaging in slave trade and prostitution are examples of dealing in living beings that are called out in the Noble Eightfold Path. These are obvious examples. But in a capitalistic society, it seems to me that there are many more ways to deal in living beings—ways that might not seem obvious until they are deconstructed.
We are all being dealt like cards every day, in one way or another. When a healthcare management company focuses on making its partnering physicians and its own executives wealthy instead of focusing on optimizing healthcare and minimizing costs for its patients, is that not dealing in living beings? When university-administered nutrition education programming is both funded and governed by the USDA—a deeply conflicted organization whose partnership with the dairy and beef industries impedes its ability to promote an optimal diet—is that not dealing in living beings?
In the first scenario, the profits are not possible without moving people through the health system. In the second, the programs cannot operate without the recipients of the programming. In each case, who is benefiting? Who is being exploited and potentially left in a worse state than before the interaction with the system? Who is being traded for profit?
At its core, right livelihood means doing work that is ethical. Since I decided to leave the field of communications, I have been trying to find the right path, one that supports and furthers my ethics. Because I want to live a life of service that is guided by respect—for myself and others—I need to find work that is in alignment with those goals.
Gaia University puts it aptly when they discuss the relationship many of us have with our work:
Most of us think in terms of “getting a job” as the primary way to earn a living—which means, of course, that we’re accepting a livelihood that’s been created by someone else and will be working on projects that meet the goals of other people’s agendas, not necessarily our own.
This is not, however, the only way to work in the world, and it’s certainly not the most fulfilling approach. As Ruth Purtilo, et all, state in Health Professional and Patient Interaction: “ … a life guided by respect depends in part on the ability to identify and shape one’s own life according to personal values and those that help to build a stronger community.”
This is what I’m looking for. This is my quest. And, like my husband’s game characters who get knocked down repeatedly in their efforts to find what they need, I’ll continue to get knocked down—and get back up again—until I become the hero of my own life and rise to this challenge.
Dana Henry Martin 