Monday, April 27, 2015

In the fog between two rivers


All day long I think of lines I should put to paper. As they knit themselves out of my thoughts I think, That one is a keeper. And then—because I've spent nearly every waking hour of the last few days scrambling to prove to state agencies that my husband exists, that he had two jobs, that neither provided him with insurance, that he then had a stroke, and that his inability to work has left us drowning in financial tumult—when I come home and think that I should update this blog those words are lost somewhere in the fog between two rivers. 

The first flows chaotically on choppy waves of happenstance that adorn my juggling-act life. The other is less definable: the current where my husband resides, flowing in and out of dreams about stem cell research and nurses who will let him have Strawberry Surfrider Jamba Juice with extra ice, sometimes peaceful, other times confusing. Savage like grace.

This morning he said, "Here's a strange thing: last night I think B— was here asking me the normal questions." These are: What is your name? Where are we? What is your birthday? What month is it?

Somehow in the blur between Saturday morning, when I first brought my nine-year-old son to the hospital to see his dad after a week's absence, and the lonely hours of that night when I went home to care for the needs of our five children, my husband tangled up details—the identity of who was performing his care. I insisted that, no, B— hadn't been here. But my husband said otherwise. Perhaps angels wear masks. 

I've been promised that our rivers will converge again. I've been told swelling abates of its own accord, and the 11mm midline shift of his brain will eventually return to 0 and stay there without the saline IV and the Manitol. At some point my husband will find his way through the fog. He will stabilize. We will keep working to restore the strength and timing of his swallowing reflex so that he can eat and drink without the feeding tube threaded through his nose, into his small bowel.

This morning, when I helped nurse Rally to bathe my husband, wash and comb his hair, change his hospital gown, I noticed the intense bruising on Mr. PNU's right arm and chest. Yesterday, after B—'s visit, nurse Jacqueline, who didn't like that she'd been moved to ICU for the day, took out her frustrations on my husband. When he wouldn't rouse to her liking she pinched his arms and chest, leaving ugly purple bruises where the blood vessels burst beneath her fingers. As I carefully cleansed him with the sponges Rally provided, I tearfully kissed these bruises, promising my husband I would personally see that nurse Jacqueline not oversee his care again. 

I feel guilty that I ever leave his bedside. But I'm not certain how to be everywhere and all things necessary to my family. I am slave to my human frailty.

When I crawl into the tiny hospital bed alongside him, my husband is happiest. He claims he can feel me when I lay in the crook of his arm on his left side. I suspect that feeling he perceives is security, not my weight and texture, but I am desperately hoping he still feels that I am in this, right now, even when I am a mile and a half away. Because, although I promised I wouldn't leave him, I gave in to fatigue and left him alone tonight in the east ICU wing at 5 p.m. Someone must care for the children. That someone must sometimes sleep.

I tell myself that I must believe it is enough that mighty prayers are being uttered on our behalf. Prayers and influence that course through my body like warm lightning and fill me with strength that is not mine, and peace that I should not logically know, because God is in this too. And so I surrender to the fog, ride the current, trust that the river that carries my husband is living water. This is my greatest hope when he is alone, his mouth parched; when he lays helpless and fragile, and nothing else will quench his thirst.

Sunday, April 19, 2015

The wee hours of missing my husband


This morning, Mr. PNU woke and told me he’d had strange dreams. My own had been vivid, disturbing. Wasps all around, getting in through screens in the windows in a strange place I’d never been before, southern, swampy, hot. My children, L— and B— were with me, but otherwise I was alone. I told him some of the dreams were right out of Inception. My husband then peeled off Poe’s Dream within a Dream from memory:

Take this kiss upon the brow!
And, in parting from you now,
Thus much let me avow —
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away 
Is it therefore the less gone? 
All that we see or seem
Is but a dream within a dream.

I stand amid the roar
Of a surf-tormented shore,
And I hold within my hand
Grains of the golden sand —
How few! yet how they creep
Through my fingers to the deep,
While I weep — while I weep!
O God! Can I not grasp
Them with a tighter clasp?
O God! can I not save
One from the pitiless wave?
Is all that we see or seem
But a dream within a dream?

The recitation may have been a little slurred. I can't clearly recall, but once he'd concluded Mr. PNU told me that his left arm felt weak, the shoulder strange, possibly dislocated. I immediately suspected a stroke, but he protested otherwise. I got frustrated and got up to shower while he Googled other possible explanations. He told me later he even tried a few pushups. When I came out of the bathroom, he was on his knees in prayer. When he got up and told me he loved me his face drooped on the left side. I guided him to the bed and called 9-1-1. 

Ischemic strokes are clots lodged in the pathway of blood flow to the brain. My husband has experienced blockage to the right medial cerebral artery. The clot couldn't be removed for fear of sending smaller clots into the deeper regions of his brain. He is experiencing paralysis to the left side of his body, inability to swallow, trouble opening his eyes, distortions of peripheral vision, and headache. He is being administered blood-thinners and an IV for fluids. Tomorrow he may be intubated for feeding. I was with him until 10 p.m., when nurse Brad sent me home to sleep. It's almost 1 a.m. Our room is lonely. I moved his shoes to my side of the bed even though I hate when he leaves them there on his own. I buried my face in his pillow hoping to find the smell of him, but there was only stink from this morning's vomit. 

I need my husband.

We held each other's hand most of the day. He told me over and over that I am awesome. I told him over and over that I love him. His speech is intact, his mind still sharp, his wit sly and quick, filled with puns. When he asked for pain reliever for his headache, and we learned he could only take Tylenol via rectal suppository, I offered to administer. It was the least I could do to help him maintain his dignity. Then I kissed him and he kissed me back. He told me I am his life; his everything. He repeated this in German because we just saw Woman in Gold together two nights ago. Before I left, I reminded him that he is mine. 

I don't want him to sleep alone tonight. I don't want to sleep alone either.

B— cuddled up next to me two hours ago and I told him that his dad is sick. He cried. "It's one thing that my other dad's left because they were bad. I don't want to lose the very best dad because he dies."
Then, I cried too. 

It's 1 a.m. I know nurse Brad wants me to rest. I'm not certain I can.

Thursday, April 16, 2015

Waiting rooms and merciful spaces


Yesterday, as the young couple I met in the hospital's surgery waiting room began a vigil for their 7-month-old son, my son and I were spending time in the Land of Salt waiting for the apple to digest in his stomach before his incision and drainage procedure at 8 p.m. We caught a documentary, An Honest Liar, at Broadway Cinema, and hung around downtown taking photos of each other and details of the urban landscape that E— found somehow remarkable.


E— fell in love with the view from the parking terrace. He didn't know why. "IDK," he said. "Maybe how the snow is weighing on the flowers, or maybe it's that green wall. I just want a photo. Take one with your phone, mom. My camera is sucky." I didn't know how to frame what he saw, but I agreed. It was a lovely view—my boy, in love with the wonder of the world around us. He hadn't been crazy about seeing the film, but he loved that too. On the way to the music shop, I asked him casually about his views on faith, because we never talk about it and I'm curious what he thinks. "I want to believe there's a god. And I believe in the whole Jesus thing too. Yeah, I like that. But I don't wanna go to church. The people there are weird, and it's not like I can pretend that they get me or I get them and we're all friends." 

I told him where my faith is, and that I get his sentiments on the sociality of religious culture. "If I didn't believe in the whole Jesus thing, too, I don't think I'd ever go. But I go for that, and then, over time, I've come to like the people there. I see how they're important even though I'd probably never have met them otherwise. I get how once I'm there for Jesus, caring about the people around me ends up being my focus. But that didn't come all at once. Humans are pretty self-interested creatures, and I'm human. We're all about selfish preservation of our own interests. I had to keep at it for months before I felt the connection to others in the religious community. It's weird, because I'm always talking about how I care about people. I shouldn't put qualifiers around which people I'm going to care for."


At Greywhale, my son took me upstairs to the punk/indie section. We perused the racks like we did in the North Country before CD stores gave way to MP3s and iPods. If we'd had more than half an hour before we reported back at pre-op I might have spent a fortune. As it were, I purchased a copy of a Baths album for E— and I found a copy of Marissa Nadler's July for myself, because I believe in the concept of the album, the way I believe in the chapbook over individual poems. 

After pre-op, where E— dressed in purple scrubs and a top adorned with purple and blue stars, I walked with him and the anesthesiologist to the surgery wing doors. The doctor asked E— to give me a hug, and he did, with the awkward obligatory movements of a 17-year-old who really does love his mom, but feels self-conscious about showing it in front of strangers. They disappear through a set of doors and I walked back down a long hallway to the waiting room door, lit up in blue. 

Inside, a young couple sat surrounded by family. The group totaled seven in all. When I walked in they motioned to me to sit next to them to join the waiting party. They said they'd already been keeping vigil for four hours; one remained before their baby boy's heart reconstructive surgery would be over and his chest sewn up again. Their baby's name is Miles. They showed me several pictures, both before the life-flight to Primary Children's and after. He is a chubby fellow, younger than I would have guessed from the photos, with sandy hair and enormous blue eyes that gobble up the light around him and shine it back from his enlarged baby heart. His parents said the doctors were shocked that he made it to seven months without the condition manifesting. Usually, infants with this particular defect, 1 in 300,000 births, fail to thrive by four months, and if the condition isn't caught, die before their first year. In Miles' case, he reached seven months in grand style, wearing 18-month clothes, and eating everything his parents offer. He is active and bright and loving. But the croup he's had for the last week labored his breathing, and three days ago his parents took him to the doctor. The exam showed nothing out of the ordinary besides the cold. Most physicians, they told me, would administer an antibiotic shot and send them home, but their doctor told them that something in his gut was telling him they should take the baby straight to the hospital. The doctors there ordered imaging of the chest, which exposed the defect—a heart missing a valve, enlarged ventricles, an output of only 11%. He was immediately life-flighted to Primary Children's, where the pediatric cardiologist explained that the condition was so rare that he'd only performed two or three other operations of the sort needed to remodel Miles' heart. Most babies don't make it to surgery. They just die. His mother kept talking about how blessed they'd been. About the Lord's tender mercies.

So I sat with this family for an hour, and fought back tears, trying not to feel out of place when they asked about my son, who would be going home that night. They were so kind, taking E—'s surgery just as seriously as their own child's. When their surgeon came back first, I sat and listened. He called the heart "horrendous"; still working at 11%. But no worse than when they'd arrived at the hospital two days prior. Now there was the six month wait, to give the heart time to return to average operational capacity. Six months. That's when my surgeon came in. I took my things, gently wished Miles' mother well, and left the family whose baby boy was apparently still somewhere in the woods to rejoin my fledgling man. 

Wednesday, April 15, 2015

I'm with a family waiting for their 7 month old son in the parents room. Incision and drainage is morning

Staph notes



E— has been to the doctor three times in the last week for a new abscess, and also complications with the initial incision and drainage sight. We've been treating his staph for a month now. Primary Children's Hospital did a second culture on April 9th, because the first culture done here by the pediatrician came back botched (after four days it grew nothing). This attempt, three bacterial organisms were identified. At least one is staph. When we left the doctor this afternoon, he was researching what the other two were and whether any of them were classified as MRSA. E—is on two new antibiotics—nine doses a day—and has been referred for a second I&D surgery tomorrow morning.

I wish I could say I've got this. I've done very little homework in weeks. I make progress at the sentence level of my essay, and in phrasing edits in poems. I've studied one unit of Greek, and managed to fall in love with W.H. Auden. So not all is lost; just a lot of the all.

E— is still working, still running about Happy Towne untethered. He wraps his abscesses, wears long pants, acts as though he's not plagued by potentially deadly bacteria. His mother, however, is not nearly so brash. I hear she's delicate these days, cries over her powerlessness, counts success in the time she's spent giving her husband and children attention the sort her books never see. In her "free" time, she pots up pansies and alyssum, remembers she's not so far removed from the earth.

Monday, April 13, 2015

On coming to understand one's self as a Mormon artist

I tread the fine line dividing the margin at the lip of the page where the outland of writing desk begins. I have tried so long not to be a "Mormon" anything other than congregant, a sinner parading as stigmatized saint. This is a funny dance. And I keep trying.

I sat in sacrament meeting yesterday and was pounded by powerful insights as a fellow sister gave the most moving talk on covenants I've ever heard. It wasn't necessarily what she said, but what I understood as she spoke that transported me so. I've been struggling for weeks, nearly months, to approach the defining scene in my final CNF essay. What I've realized is that the act of trying to write the episode as something outside of my understanding is disingenuous to the piece. And when I'm finally able to write the powerful revelations I confronted yesterday, the essay will only be a "Mormon" essay. I know Karin wants a universal work. Except, I'm not a universal agent. I mean to write to an audience to help them better understand the tightrope negotiation of being both in the world and not of it that we are required to balance in discipleship of Jesus Christ.

Today, I am comfortable finding myself nudged into the world of "Mormon" artist. It provides an element of both safety and risk that fuels my work, informs my choices, makes me work harder to produce clean craft and give careful attention to what I finally sign with my name. 

Karin once said that women my age come into their writing because they are finally free. I had no idea that I'd be free to cast off the demands of being an "other." 

I'm squarely decided. 

Monday, April 6, 2015

Ethical gems: a running list

Mr. PNU is sweltering in the heat of Ethics essay season. He won't let me help grade, because that wouldn't be ethical. But my husband is kind enough to share his favorite lines with me. And as long as I don't include his name, my name, the real name of the university, or the name of the authoring students, I get to pass these beauties along to you.

Keep in mind that last year, when I was Mr. PNU's TA, and neither his wife nor girlfriend, grading was my job, and I walked out of Noah, which was supposed to be my respite from grading, and instead went home to finish grading papers with humdingers just like these. I know that doesn't say much about the film, but when there are gems like these to be found, you'll get why I made the choice.

I'm starting with just three lines tonight, but I'll be updating the list over the next couple of weeks. Stay tuned:


#1. "This means that the truth is true, even in a universe with nothing."


#2. "There is no soul that the tongue of evil has not licked."


#3. "The Chinese believe that if you're good when you die, you go to the Netherlands."


#4. "In other words we need food for the minds, and philosophy can occupy that."


#5. "One of my favorite examples I like to refer to is the story of Les Miserables, where Javier is strictly bound by his rules and theory of justice and Jaun val Jaun, though he is a good moral citizen who does follow rules, he is also a very virtuous character and can act on his intuition for the better good of the situation."

Defenders












Saturday, April 4, 2015

He is here

The idea is simple. 
If you live in Happy Valley you know why we chose these locations.


The fact is that residents drive by the poor, the addicted, and the homeless 
each day without registering the implications.


Perhaps some have found a way to see through them.


But because I've been homeless and on the street, I can't.


I had a difficult time deciding whether or not to incorporate actual homeless persons into this photo essay, although originally, I thought the idea was inspired. Today, en route from one photo site to another, L— asked me how the idea came to be. This one was a lightning strike. Sudden and fully developed the moment it drifted into my mental periphery. Several of my friends have been posting their social media contributions to the LDS Easter campaign #BecauseHeLives/#HeIsHere, and I felt prompted to jump on board, extend my outward expression of discipleship, offer my perspective on what the gospel of Jesus Christ means to me. I looked up the Church's webpage, and sure enough, they offer PDFs of the "He Is Here" Google Maps icon. So last night, after double checking with Mr. PNU that I wasn't doing something completely nutters (he's my sounding board, or check-in when I get ideas that I suspect might be detached from reality), L— and B— accompanied us to the library to print off an upside-down teardrop. I affixed it to the back of a Barque's root beer 12-pack case that I cut out square and then laid flat. Then I headed out with my sons to the places I know the homeless and the beggars frequent.

The first person I approached was John. I'd guess he's somewhere in his forties. His hair is gray and he wears a long grizzled beard, with the mustache neatly trimmed. I sensed he hadn't bathed for some weeks, or that his clothes were badly in need to washing. He rode up to Smith's Market on a bike laden with his worldly possessions in a few plastic shopping bags. He was immediately skittish as I approached. I tried to explain I was doing a photo essay, and offered him $5 to be in the shot. But he immediately turned me down, saying, "I wouldn't do it for five grand." Rather than walk away I continued talking to him, to try and explain where I was coming from. I didn't push for the photo, but I did offer the money without the picture. He still refused. Our conversation wandered about wildly. He mentioned evil and corruption, D&C 38, the Georgia Guidestones and the Bilderberg meeting. I quickly realized I was speaking to a paranoid schizophrenic, but I stayed and listened. For half an hour John expounded on the finer points of his conspiracy theories. I commented where I felt it applied, but mainly, I gave him my full attention and just listened. Toward the end of the conversation, John softened his tone. 

"You know," he said. "I think I misread you."

I told him how important people were to me, and that the photo essay wasn't nearly as important as being out in the cold night, giving my ear to the lonely and forgotten souls who roam this city's streets. He nodded. 

"Jesus never left us," he said. "He's everywhere, in our face. If ye have done it to the least of these."

John gestured to himself. "He is here."

I could tell he wasn't nearly so put off that I'd asked for his picture as when he'd initially responded. He'd felt it was an invasion of privacy. No matter how deluded his reasoning, John is a highly intelligent human being. He is terrified of NSA, of social security numbers, of being tracked and fixed in one place on a map. But as I prepared to leave he asked if he could have my phone number so that we might talk again. I've never felt quite so conflicted about my principles and my safety. I decided to give him my old number, to be on the safe side. But it still hurts that I was dishonest with him. I felt I was beginning to gain his trust, and John is one of so many who have no one to cling to. He took the piece of paper, split it in half and wrote several references he wanted me to look up; including Kelly Thomas, and Daniel Estulin. I shook his hand and he shook B—'s hand too. I hope we run into him again, but I suspect we won't. These people are good at disappearing. 

As I lay in bed last night I promised myself I wouldn't exploit people for this project. And so today I employed L—'s help. I took her to each of the photo sites, and when we found Bruce and Albert already occupying the spot, I explained that I just wanted L— in the picture unless they'd like to do it with her. Both readily volunteered. 

Bruce took my money as a girl he's working with walked up and gave him a few more dollars, warning him that cops had been harassing her, before she headed back around the corner. For all I know he's her pimp. We took the photo and left.


Albert, however, spoke to me and L— for an hour about his hard 65 years of living, and refused our money. 

Albert was born two hours north of Happy Towne. He served in the National Guard in Germany for two years beginning when he was 19. He married and had four children. None of them will speak to him now. Albert has done hard time in prison—11 years—for crimes he admits were violent. Incarceration changed him, he said. He's been addicted to heroin for years, detoxed 10 times, relapsed 9. Many of his teeth are missing. He's worked a dozen jobs, but can't seem to keep focus for long. I asked him where he stays, and he told me that he's found a place where the land owners will let him set up his tent each night. He keeps the site clean, refrains from moving his bowels on the property. The land owners don't mind, and he tries to be discrete. He begs for money to buy food each day. If he gets extra he shares it with other homeless folk. Sometimes he panhandles enough to get a room at a Motel 6; a clean place, without bedbugs. He says his heart valves are faulty, that he needs an operation that will cost several tens of thousands. In the meantime, he rides a bike to stay fit and strengthen his ticker. I tell him the cigarettes will kill him, and he insists he only smokes 4-5 a day. Albert says people drive by screaming "nigger" every time he panhandles. He asks me if I know where the word comes from. 


"The slaveowners called us that to dehumanize us," he says. "But it's those that yell nigger who don't understand. I'm not ignorant. I used to take classes from Westminster; got top grades before I fell in with the law. I hadn't learned my lesson yet. But I know now. I used to be a mean one before prison, before I quit the drugs and the drinkin'. Now I realize the importance of trust. Human beings have to be trustworthy and we have to trust each other."

A man drove up in a BMW. He rolled down the window and passed out a dollar that he said was for L—. He must have assumed she was panhandling too. Albert passed it right to her, but she tried to give back it to him, insisting that he needed it more. 

"That man gave the money to you, said he wanted the girl to have it. He trusts me, and I want to be trusted."

 

As we prepared to leave I promised Albert we would pray for him. He thanked us. "That's what God wants us to do. To be concerned for each other. He'll take care of the rest."


Finally, I took L— to the catchout where drifters jump the train cars near our home. My daughter has been asking to see the camp for a year, and today I decided she's ready. I held her hand as we negotiated the embankment that slopes beneath the overpass. She carefully picked her way through the lava gravel, avoiding the spots where I warned her there might be human waste. Here, near the train tracks, there is evidence of much human activity. Comings and goings. Graffiti indicating connecting routes to take, places where transients best steer clear, phone numbers for those who need help. The camp is littered with discarded bottles of used toiletries, cigarette butts, empty food canisters, tattered clothing, an electric griddle, a Book of Mormon, a mattress, a molding lawn chair, a firepit, and a cooler labeled "take what you need and pleez replenish." All that was inside today was a pair of soiled underwear. 

After taking photos and examining the new graffiti, L— and I scrambled back up the embankment. My daughter held my hand all the way back to 7-11 where we'd left our car.

"We're so blessed," she said over and over again. "We're just so fortunate."



Thursday, April 2, 2015

E is for "everything"


My 9-year-old son, B—, is on the spectrum. He was given the diagnosis, PDD-NOS, at the age of four.

That stands for Pervasive Developmental Disorder-Not Otherwise Specified. In short, he didn't speak in complete sentences until he was four. It took him a year to learn six basic colors. He didn't fear eminent personal danger of oncoming traffic, but screamed if I tried to get him to walk barefoot in the grass. There were plenty of other challenges, but really, who's keeping count? He gives back more love and affection than he's ever been trouble.

He tells us, "Four is my favorite number because that's when I got my memories."

B— has accelerated mental acuity in numbers, spacial reasoning, and also empathy. He is ahead of his class in Math, and tackles geometric problems for fun. On top of autism, B— struggles with ADHD and battles tics associated with a diagnosis of Tourettes. But although he is hyper aware of his symptoms, B— is determined to have courage and be kind to everyone, even when he knows others might judge him unfairly.

Someday, B— plans to establish the E-Company. "E," he tells us, "is for everything."

E-Company—which he hopes to locate in New York because B— loves the Statue of Liberty, and because his company will need more employees than are available in small cities—will make anything and everything that might make life easier for the people B— cares about. I don't know anyone B— doesn't care about. He's been at work on designs for his company since he was four, drawing complex geometric layouts that take into account all dimensions of his intended inventions.

B— dreams of creating robots.

Last night, I took B— to see Big Hero 6 while Mr. PNU, whom B— calls "daddy", graded Ethics essays. My son and I sat on the back row of the dollar theater, where he clicked, kissed, and squinted his way through the movie, sometimes curled up next to me sharing the popcorn, sometimes kneeling up on the seat, bouncing up and down when the action climaxed, sometimes wrapping his arms around me, crying along through the tear-jerk scenes. He loved the film. I asked him about his favorite character. 

"Baymax 2.0!" B— declared.  "And I want to go to a school like Hiro so I can design robots for E-Company."

I told B— that if he keeps up the good work in math and science, that just might happen. Watch for it. E-Company.

Wednesday, April 1, 2015

52 days


I have to stalk my daughter on Tumblr to see her artwork these days. It's not that she's hiding anything. We're just at that junction where her life is hers, and mine is mine even though our rooms share a common wall. She's two months shy from high school graduation, already admitted with a four-year, full-ride scholarship to the Pie Tin, making plans for a degree in illustration. I'm sure she has other longterm plans in mind, but those paths seem more plasmic. Her boyfriend is two years younger, finishing high school via online classes, hoping this month to become an engineer; for the last year he's been talking law enforcement. I think plans they made to eventually head off for a life in Las Vegas are fading. Both of them seem to be age appropriate in shifting ideology and faith, if not goal oriented behavior. Neither of them are heteronormative, so the fact that they've found themselves in a heteronormative relationship has its tensions. Hopefully, loyalty will win out in the tug of alternate attractions. If the relationship ends for any other reason, I think I can cope. But if M— were to leave her boyfriend, Z—, for a woman, or if Z— were to leave M— for a man, I think I'll be devastated. They're kids still, tossed about by hormones and psyches that sometimes gel perfectly, other times I wonder how much longer they'll adhere to the same life plan. 

Thing is, I love them both. 

We open our doors to our children's people and create new rooms in our hearts that we certainly don't plan to ever be vacated, even if they are too young for permanence, and we too wise to encourage it.

Path over destination


It's hard not to wander once you've learned that's the point of the path. 
A thousand someones wandered this way before you
until a road surfaced.


And you can follow,
or not.
All around, the woods whisper about other ways;
even game trails promise to peter out on something
in breathtaking fashion
over possible paths
where few someones will ever tread.