Wednesday, September 17, 2014

Yellow Wallpaper

I'm quite often silent these days when I'm in The Overwhelm, a black hole of tasks, too many requests for information and documents, as well as the unexpected medical adventure.

The weekend of September 6/7 began innocently enough. I had a new pair of Merrell's running shoes with bright green laces. I'd strained a muscle in my thigh several days earlier by repositioning the washing machine, which has a tendency to move about the basement; thus, I was eager to get out on the sidewalks of my neighborhood and see how these new shoes performed.

Near the end of the third mile and hoping for a fourth, as I headed up the gradual hill around the neighborhood park, with a bank on one side and wall-to-wall parked vehicles on the other, I noticed piles of super-size duffel bags, coolers, and other miscellaneous Little League equipment completely blocking the sidewalk. These new shoes felt so good, I decided on a non-recommended course of action: simply leap over the equipment, why bother to stop running and step around it?

Naturally, my decision became an epic fail as my left foot caught a strap on the duffel and I found myself briefly launched in the air with the single thought, "well, that was dumb." My left cheekbone hit the sidewalk a split second before both of my palms hit. I didn't even feel my right knee impact, hard. Both coaches came immediately to my aid with sincere apologies for blocking the sidewalk, helping me up, bringing towels I initially declined because why get blood all over those?, water, ice, and so on. I laughed and told them that maybe it would have been better not to have things all over the sidewalk, but that I certainly shouldn't have attempted to hurdle over it to begin with.

Mostly, I was fine: knee with a lovely sombrero-shaped edema forming, skin scraped off my bleeding cheekbone, bruise just under it, other assorted bruises and scrapes. Lucky: no damage to my eyes or nose, no broken teeth. One of the players stared at me solemnly and I said to him, pointing to my eye, "this is going to be awesome in the morning, isn't it?" He nodded. Word. It was a massive black eye the next day.

On Saturday morning, I rested my banged-up body in bed, a room down from Robert. Around noon, I heard, or thought I heard, the suction machine running and small cries of pain from my son. I wondered if the nurse were going too deep in his trachea with the suction catheter--she was new. I thought about hauling my body over there, but I heard Roger's heavy footsteps on the stairs.

Within less than 60 seconds, Roger's panicked shouts to come in. I did and walked into a situation it took my brain some time to process: Robert's trach was out, the nurse was holding Robert upright in bed, Roger held the ejected trach and Robert was spurting blood through his stoma as he coughed. Not dribbles of blood, but jets of blood arcing through the air. There's still blood-spatter on the opposite wall and the window.

Approaching Robert more closely, blood was welling up in his throat and he was gargling it away, blood bubbling and trickling down the sides of his mouth. My daughter said I screamed. I'm sure I did--she'd alerted Roger to the problem, while the nurse had not called for help at all. Some confused explanations from Roger, who'd walked in to a similar nightmare panorama.

The bottom-line was: Robert's trach had come out. We still don't know how, exactly, or why as the nurse's story has varied and was unsupported by the facts in the room as it was, the positioning of equipment, etc, Robert's state of half-undress. And why all the blood? That, too, remains an unanswered question. A dislodged trach can sometimes be popped back into the stoma; however, once a trach tube is placed, the insertion post (which has a rounded tip) is removed, and the end of the tube is cut away, rather than rounded, making re-insertion somewhat difficult.

Robert has a trach because his airway is compromised: he can no longer shift well between swallowing and breathing. Trach displacement not only severely compromises his ability to breathe, it opens the possibility of aspiration. A person with a dislodged trach will panic because he or she cannot breathe--in addition to that, Robert experiences the sensation of drowning because he can no longer manage his secretions. The nurse had been telling Robert to calm down--because if he just calmed down, she could re-insert the trach tube. Almost certainly, her efforts to force it in had caused the bleeding.

Displacement of the trach can cause swelling on its own, let alone trying to force the tube back into tissue contracting because the patient is gasping for air. This is why a trach patient always has two unopened trach tubes near him or her at all times: the usual size and a tube two sizes smaller. Both of these were sitting next to the bed in their appointed basket.

We need to put in the smaller trach, I most likely screamed. And I grabbed some gloves, started tearing open the box of the Shiley 4 and ripping the plastic around the tube, inner cannula and guide post. Brief pause while I remembered the tube comes shipped with the inner cannula in place and the guide post separate--why? Remove inner cannula, slip in guide post. I forgot lubricant, but, honestly, the stoma was slippery with blood at that point.

The nurse begins to complain that she is pregnant and it is too much for her to hold Robert upright--not the proper position for trach insertion, but laying him flat would cause him to choke on his own blood at that point. I tell her I understand that, but I'm performing an emergency trach procedure on my child. As I move into position to place the 4, the nurse slips away, leaving me holding Robert with one arm, the tube with the other--Roger has left to call 911. He returns because I realize I'm holding my child at the edge of the bed and I scream for him.

I try twice to gently slide it in and fail, and tell Roger to complete his call to EMS. While he calls, I manage to slide the 4 into place, pull out the guide (which the nurse tells me to do as I'm doing it--she's oddly calm and now seems to think she's my coach). Robert was taken away by the EMTs with excessive bleeding, a compromised airway, and disturbingly low O2 saturation rate (he'd had an airway in place for several minutes before they arrived, so who knows how low they'd been?).

I tell all of this because the nurse's story, as told to the nursing supervisor and others, has her performing all of the actions we performed that day: sending my daughter to get my husband, inserting the 4 herself (and thinking of it), no blood at all, and Robert leaving on a gurney at 98% O2 saturation on room air. Robert left on oxygen and remained on oxygen support until Sunday morning.

I had to tell this story several times over the next week while I hobbled around looking like my husband had beaten me. I grew tired of entering rooms and explaining my ridiculous running escapade to horrified faces--once you're at the hospital, there are a lot of those.

Robert ended up being OK. A couple of scopes by various ENTs at Suburban ER and Georgetown PICU showed no lasting damage to his stoma or trachea. The 4 was exchanged for a 6 on Sunday morning after the swelling went down. He stopped bleeding and coughing up bloody secretions. In fact, he wanted to go to school on Monday.

The episode left me shaken, obviously. First of all, it reminded me once again of Robert's mortality and how that now hangs on the smallest of things--a velcro tab that suddenly loses its grip. I'd prefer not to think of that. Each day he's with us feels right, normative, good. We love him.

Second, though, and it took until yesterday for this to build: the discrepancies between our version of events and the nurse's version of events hinges on the fact that as the parents of a child with disabilities, she can attempt to pathologize our behavior. My husband and I think her odd calmness wasn't shock, but an effort from the beginning to snow us into thinking we were crazy while blood was spurting all over the room and she did nothing to move to the next logical step to save Robert's life. Either that, or she didn't appreciate Robert's life, as though he were merely a bag of disability to be moved around at her convenience, hardly human, just a mechanism into which another mechanism must be inserted.

Yesterday, I lay on my bed with an awful head cold on top of the bruised knee and still healing eye. I hate being sick. So I started reading Kate Zambreno's HEROINES, an innovative critical study of the wives and women of the Modernist era, whose lives, work, and speech were pathologized as illness and insanity. Zambreno writes:
[Eliot's] theories of depersonalization form the foundation of the theoretical school called New Criticism, still the fundamental ideology governing how we read and talk about writing. One cannot portray emotions in excess (in literature or in life). This is a judgment not only of a work of literature but also of propriety, how one should behave. One must discipline one's text, one's self.
As I was reading this work, which takes on Eliot's theories of the impersonal, the objective correlative, all that, with which I'm familiar, more of my life grew familiar to me. How easy it is to pathologize my speech, my writing about Robert. How difficult it is to stand up in an IEP meeting or a PTA meeting or in front of a principal or a nurse or another parent and assert my child's dignity, my family's dignity, my dignity. I never know to whom I'm truly speaking--someone who will take me seriously or someone who will try to pass me off for crazy.

Because it is crazy, to many parents and administrators (not so much to physicians, despite the old bugaboos), to assert that your child, though severely disabled, deserves dignity. Other people may think he deserves sympathy or accommodations, but attempt to discuss equal citizenship or equal rights and a strange look comes over people's faces. Whatever Robert may be, he is not an equal, they think.

I've been almost literally patted on the head and told I was a "good mother" when I suggested to a family member that Robert's choice of colors and direction of lines on paint-your-own pottery showed thought and compositional effort.

I've been told serving "all" children at a school--the motto of the PTA in Montgomery County--doesn't mean what it says. That it means serving the majority. Who are typically developing. When I've pressed about bias, I've been told my child was an outlier and "we can't serve everybody." I am taking away from the needs of others, I am told.

I've been told by the actual special needs liaison to the PTA as I wanted to ask about building access for children in wheelchairs that she hadn't seen any children in wheelchairs or with mobility disorders at the middle school. And, furthermore, she said, "did you know that the majority of childhood disabilities are invisible?" Well, yes, I do know that, but it doesn't mitigate discrimination against those with apparent disabilities. Except that now that the PTA is willing to serve people with disabilities, they want to serve the majority, excluding, of course, people like Robert. I am selfish, it is heavily implied, to want to have my son included.

When the high school principal was determined to prevent my daughter from taking a more advanced science class, her relationship to her brother was pathologized: wasn't it stressful enough for her to deal with a disabled brother? We were, as parents, pathologized for wanting our daughter to be challenged.

My speech has been pathologized by physical, occupational and speech therapists. I am an anxious parent, a little crazy. I see things in my son that aren't there.

Except that they actually were--finding a diagnosis for Robert has removed some of these attempts to characterize me as unbalanced, selfish, greedy, delusional, overly-hopeful, etc.

The worst and most obvious, of course, came from one of my husband's brothers. Their attempts to pathologize the two of us as unstable grifters, using our disabled child for sympathy and as a means to grub money from hard-working people, our evident neglect of our daughter--these air castles had traction in a family that saw little of us, leaving room for imaginative invention. And how easy to turn me into a harpy--a crazy person obsessed with her child, detached from reality. The parting shots from my brother-in-law as I finally attempted to stand up for myself and reveal some of his dirtier stunts were 1) "Did you take your meds today?" and 2) "I SAID, did you take your meds today?"

Zambreno has a point that extends further than she may have thought.

My own pressing concerns as I lay in bed, overthinking everything because I had nothing better to do, had less to do with the past, the insults, the lies, the mischaracterizations. More to do with my worries at how my writing, about Robert, my primary subject, sometimes seems to be received. I'm certain I'm not being taken seriously by any number of literary outlets--although I know I'm taken seriously by many more.

Perhaps that's just the way of the world. I've written and sent out and received acceptances and rejections for too long to take much personally, except I've taken a set of rejections rather personally over the last few months. These have to do with essays about Robert that are based on the facts of my personal experience with health care, diagnosis, medicine, and also tell true stories crafted like fiction, short stories.

The current fashion in nonfiction is against memoir, which is story-telling, no matter how sophisticated. The majority of memoirs are written by women. Nonfiction, a cowgirl genre without many rules, is increasingly subject to what Zambreno describes as "the idea that one must control oneself and stop being so FULL of self remains a dominating theory around mental illness, and, perhaps tellingly, around other patriarchal laws and narratives, including the ones governing and disciplining literature."

Facts! We must have facts in nonfiction--supported by outside authorities! Every essay is a research
paper, guided by minds stronger than ours. Note, for example, these guidelines for an essay contest:
Submissions must be vivid and dramatic; they should feature a strong and compelling narrative and reach beyond a strictly personal or anecdotal experience for some universal or deeper meaning. (Put another way: something should happen, and it should matter to readers.) Our readers also like to learn new things: tell us something, whether it’s about the history of clocks or how the mind processes time, or maybe about how waiting-period laws vary from state to state. We’re looking for well-written prose, rich with detail and a distinctive voice; all essays must tell true stories and be factual accurate.
When I read this, my mind prefaces it automatically with "Now, Ladies ..." We don't want your personal stories, as those couldn't possibly hold a deeper meaning. Those words couldn't matter to readers. Back up your own insights with the insights and observations of people with more authority than you! People who write about clocks! Scientists who study the mind!

Lately, I've gotten several rejections with handwritten or personal notes stating how moved editors were by my story about Robert, how much they enjoyed reading it, expressing concern for my son and my "journey", wishing us well--and saying that my essay is "not for us." While I know better than to pick apart a rejection (just move on), the only way I can make sense of these is to understand that these editors have been pathologizing my carefully crafted speech about my subjects: disability, medical care, bias, etc. I'm not a serious author; I'm a mom writing about her child, writing with understandable emotion, but, still ... I am an emotional train wreck, although I'm careful to temper emotional content in my work. God forbid anyone publish emotional slop.

I've come to realize, working through the world of caregiving and illness and disability, that many people purposefully misread the speech of caregivers or persons with medical issues: there are two acceptable modalities, joy at overcoming obstacles and grief. Joy is often patronized because no one truly understands the magnitude of the stakes. Grief is offered no active solution, just a shoulder to cry on. We are actively dis-composed, highly emotional and messy people. We cannot possibly be composed, rational, logical, funny. It's a way of pushing away what you'd rather not think of, of dismissing ideas and people who make you uncomfortable, insights you'd rather not ponder.

In between these poles, however, lies tremendous insight into the human condition. I could write something about waiting and clocks and disability and medical care, but that would be channeling a story no one really knows or wants to understand into a false narrative so that someone can neatly brush it from their hands as cliche because, well, this fits the narrative of either joy or grief with which we're so familiar.

Yes, there are too many submissions. Yes, it's hard to pay attention to all of them. No, I'm neither special nor a genius. Yes, it's possible these were rejected because they're just not good enough.

There's no yellow wallpaper on the walls of my bedroom--but they are painted a pale yellow. At least I'm up now, out of bed, almost ready to go running again. Once again balancing my needs against Robert's. It's difficult, you know, the absorption of my own self into his and vice versa. Part of what both parent and child need is separation. On my darkest days, those days of the false eerie brightness of the yellow wallpaper, when this whole thing threatens to obliterate me, those days I sense my entrapment, as do other women I know. What will happen to us? Where have our lives gone? We deny it, of course--that's how we survive. No one likes the emotional breakdown. Especially not editors.

Once again, Zambreno: "I use the term 'madness' here to describe these women's alienation, because I see their breakdowns as a philosophical experience that is about confinement, or even death, of the self. This gesture of confinement, of exclusion, occurs when we speak of and name the figures of literary modernism: Us versus Them. The mentally ill ones versus the geniuses. But who gets to decide?"

I don't know and I don't care at the moment. At least I'm free of the room with the yellow wallpaper. And I have shoes designed for running.


Elizabeth said...

This post, this writing, has made me sit up in my own bed where I've been lying, on and off,, for days. It gives me strength. Thank you.

Selene said...

So compelling, thank you.

A said...

A wonderful piece, Jeneva, brimming! And immediately tempting me toward much too lengthy responses, so I'll wait a bit. Perhaps I'll be able to organize my thoughts and edit them down to a few comments.

Jeneva Stone said...

Thank you, all, for leaving comments, Elizabeth, Selene, and my lovely A. My only true wish is that I've given other people something on which to reflect.

Suzanne Edison said...

Jeneva, this is a stunning piece of writing. I am sure you've read the book Stories of Illness & Healing: Women Write Their Bodies ed. DasGupta & Hurst ? If not, do it. You are not alone. And though there is no little irony in the fact that men have essays in this book, as though to legitimize what women say, it is the women themselves who tell it like it is. Where are you sending your work?

Liz the PT said...

Your points are all excellent. And you are saying exactly what I've been trying to articulate when talking about inclusion--no one wants to talk about how to manage that with kids with complex needs (medical or behavioral or both or other). It's an ignored minority that deserves full recognition and dignity and service. ALL kids deserve X (except those kids over there)! I think that in the short term, the inclusion movement will merely further segregate the kids with more significant needs, until those parents rise up and demand the inclusion. And then there's the whole idea that education should be individualized...oy.

Chemical Billy said...

Jeneva, essays like this are why we have art in the first place. Going deep into the personal, sparing nothing, is exactly how you reach the universal, exactly how others with completely different experience can come to care about, be aware of, begin to understand something new & different.

Lisa Schamess said...

I relate to all of this so deeply.

yes. the story of these endless ordinary extraordinary days, neither grief nor triumph in them: too threatening. Keep telling them. Those of us trapped in our respective yellow rooms are listening, and hungry for more.