This Life Designed

Abandonment and Chaos

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.

Forty-Four Signs of Immunotypical Privilege

Every day, as an immunotypical person —

  1. I can touch door handles and other surfaces in public without much concern.

  2. I can go out during flu season without worrying too much about contracting the flu.

  3. 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.

  4. If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.

  5. My health status never goes from relatively normal to life-threatening in a matter of hours.

  6. When I take antibiotics, they work quickly and I only need one round.

  7. I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.

  8. I have never been on prophylactic antibiotic therapy. I don’t even know what that is.

  9. 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.

  10. 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.

  11. I have never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. I know I won’t have to pass on social activities because they would put my health at risk.

  17. I know family gatherings won’t pose a threat to my health, even if young children are present.

  18. 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.

  19. 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.

  20. 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.

  21. If I pick up a magazine or watch television, I will see images that represent me and my experience of my health.

  22. 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.

  23. My actual and potential contributions to society will not be challenged because of my immune system.

  24. I can go for months without thinking about or being spoken to about my immunotypicality.

  25. I am not identified by my immunotypicality.

  26. 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.

  27. 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.

  28. 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.

  29. 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.

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. People aren’t embarrassed to be seen with me because of my health status.

  35. 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.

  36. My partner doesn’t suffer from undue stress and hardship because he or she is my primary or only caretaker.

  37. 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.

  38. 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.

  39. 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.

  40. 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.

  41. I’ve never had the experience of being misdiagnosed over and over again throughout my life.

  42. 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.

  43. I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.

  44. 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.

—

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.”

The Quest

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.

Writing: The Measure of a Breath

Two days ago, we learned that Hayden, our beloved chihuahua, has kidney damage. There are things we can do to help her retain enough kidney function to live out the rest of her life before her kidneys fail. This is very encouraging because it means we can do preventive care rather than simply engaging in palliative care. However, there is no guarantee our measures will work. Serious illnesses like this take their own course. Sometimes intervention can’t change that course.

Hayden has done so much for my husband and me since we adopted her just under two years ago. I tell people she saved my life. They think I’m being hyperbolic, but I’m not. We adopted Hayden in part because we knew dogs provide excellent therapy for people with depression, anxiety and other chronic health problems. Now that we have her, I never feel alone. By that I mean I never move into an emotional state in which I am completely inaccessible, one in which I don’t know how to reach out to anyone for support, even myself.

Hayden tethers me to this world—and to her heart, my husband’s heart and my own heart. Each day, she shows me how to be gentle, playful and kind. Because of her, I feel more open. I trust the world more and want to fight for it more passionately. In her eyes, I see the beauty of all living creatures, and I understand the need to protect the environment that supports us all.

I still have so much to learn from Hayden, but right now I need to turn my attention to supporting her to the best of my abilities. I need to remain in the moment so that I don’t impose my own suffering on her. I don’t want my knowledge of her illness to cloud our time together. I need to remember that if, at the end of the day, Hayden has had a good day, that’s all that matters. At the same time, I must think about the future so my husband and I can intervene now on Hayden’s behalf. I can’t just be in the moment or her future could be compromised.

I have a lot of learning and growing to do in order to meet this challenge and be the caretaker and companion Hayden needs me to be. I hope I can do for her a fraction of what she’s done for me. Right now, she’s taking a nap and looks perfectly content. It’s hard to believe there’s anything wrong with her. Earlier, she ran and barked in her sleep. I like to imagine what she might be dreaming about: perhaps a warm day in the park, chasing squirrels up trees; or maybe a scene from her life before we adopted her, a place she only returns to in her sleep.

A train moves through the city; its hollow notes ride the air. This is a dark day, a cold day. Rain pads the windows like fingertips. Even the birds seem to be complaining about the weather in curt and muffled tones.

I’m going to join Hayden now. I will lie by her side and breathe with her. Measured in breaths, even a short span of time feels nearly infinite. I will count every breath and remember that each is a miracle, one we all share.

Sound, Sense, Story, Song

I read poems four ways: as sound, as sense, as story, as song.

As a poet, you can either have a steadfast allegiance to your poetry or to your ego. Please choose wisely.

I need a larger mind today, and a larger heart.

I watch three deer run back and forth across the seam that separates trees from meadow. This is what the human heart and mind do at their best: move between states as if they were landscapes, tracing a crooked line for others to follow.

I am seeing more and more kindness and generosity in those around me. And more and more, that kindness and generosity make my heart and mind sing.

Metadata is my nemesis.

I am a typo.

I think we should stop eating meat and start eating vegans.

I keep reading “Three Days in Austin” as “Three Days in Autism” and thinking, “Actually, it’s been a lot longer than three days.”

Conversation I had today: Person I Was Talking With: “You’re in your late 20s, right?” Me: “Yes, that’s right.”