Monday, June 29, 2015

Kids on an overcast beach





 








Fight or...

This past week I flew the coop. I was given no other choice.

For three weeks, my husband and I have begun to create a pattern of normalcy since his stroke. We were taking walks almost daily, began visiting local restaurants and evaluating them for wheelchair accessibility. We were settling into a schedule of showering, of going to church, of managing the lessening of visits from friends and family, and spending more time with my children at the nursing home. At home, my children and I have been settling into summer and the comfort of a relaxed pattern living free from extraneous expectations. Those three weeks were needed respite from the constant unpredictability of the preceding two months. Except for the continued financial strain, and the seemingly endless tangled morass of the Medicaid system (which is still proving unattainable for my husband), I was learning to cope. Life seemed to be growing manageable.

And then I noticed symptoms that nurses confirmed were a blood clot in Mr. PNU's leg. And then the State of Jell-O fined me and my husband $6,000 for overpayments in medical and food stamps prior to the stroke. 

Before this his parents had planned to come from Arizona to visit for a week. They weren't planning to stay with us, but during the first month after Mr. PNU's stroke they were present in the hospital and nursing home almost constantly. It was a huge relief for both me and my husband when they finally went home. As last week progressed they informed us their stay would be more like a week and a half—"ish." Then they told Mr. PNU they didn't have a departure date, but that they wouldn't be here come August. 

I saw my grasp on normality slip away again, and with it my ability to mentally sustain the work and stress I have been learning to manage. Mr. PNU and I discussed the situation and the hardship it was causing me. We agreed that for the time being a visit from his parents was not in my best interest, nor in the best interest of our marriage. He called them and asked them not to come. His father replied that they wouldn't be told to stay away. My husband repeated the request that they give us space three more times. Each time, this request was ignored. I wrote my father-in-law and begged that for the time being they give us space.

"I'm pleading with you. Do not come. You cannot possibly help by being here right now. You will add to stress that I have only just begun to get under control. We are keeping you updated. Please. Stay in Arizona for the time being. Our marriage needs the space from family hovering so we can figure this out together. Please, don't be selfish."

He replied, "We will only visit as anyone else would, just with a lot more love. If we can help while we are there or here, you have but to ask."

"No one visits for longer than an hour, and rarely more than once every two weeks," I told him.

"Listen to yourself. [Mr. PNU] is our son."

"He is my husband. Whose needs are more important right now? Yours or our marriage?"

He didn't respond after that, but my husband told me to brace myself for their arrival. 

It took me years to understand the damage done by trauma. 

After growing up in a home where my emotional needs were neglected in exchange for unreasonable ideals—my safety sacrificed to the outward appearance of all's well—I've come to reject the imposition of expectation. That reflex, in fact, is so strong that I can't call that rejection a choice. Intuitive to my survival, I am indelibly equipped with a mechanism that the psychological community dubbed Post-Traumatic Stress Disorder.

Each of us is owner of metered awareness of our personal safety. We may not consciously think to ourselves, "I am safe" one moment, and "I am not safe" the next. But we experience physiological change when that meter is tripped. Cortisol and adrenaline flood the body. The pulse quickens and heart pounds, muscles contract, blood pressure rises, and senses sharpen. This set of changes boosts our strength, the speed of our reactions, and drive an acute focus preparing us for what is commonly referred to as fight or flight.

I grew up in a deceptively unpredictable environment. While schedule and order seemed to dictate the household, any childhood error from that regimen exposed my parents' verbally and physically abusive underbelly. Instead of feeling security at home, I experienced almost constant dread. When would the next wild accusation of my inherent evil fly? When would I feel the next blow? It was not a safe place to be a child or to behave as a child does. By the time I turned eleven years old I knew fight or flight like the texture of skin on the back of my hand, and though I may not have been able to vocalize the knowledge, I was aware that fight further jeopardized my safety; flight did not.

(For the sake of clear definition in the following paragraphs, when I say "needs," I mean those conditions necessary for continued ability to function as a productive adult without incurring further trauma and harm. Needs are not desires to have all things go one's way. "Boundaries" are limitations set to maintain the need for physical and psychological safety, not selfish bullying to have one's expectations met.)

For a long, long time, because of the trauma of my childhood, I didn't understand that it is both acceptable and right for human beings to express their needs and to create boundaries of safety for themselves. When I am threatened I psychologically shut down. I am almost completely incapable of direct interaction in conflict. Not unwilling, unable. I shell over, statue-like and mute. When these threats persist, I break down, unable to take care of myself or my children. I know my limitations. I know the need for creating boundaries to continue being a healthy, functional adult. I am finally at a place in my life when I can openly express both.

I have two longstanding, reliable tools in my emotional toolbox that I acquired as necessary instruments for surviving my childhood, and for negotiating the dangers of a PTSD world now that I am an adult: writing and isolation. Rather than face-to-face confrontation, I write to maintain a safe distance between me and potential threats while I am expressing my needs. When threats to my emotional and physical safety persist after I extend my needs in written form, and after I do what is necessary to create boundaries, I create walls that are hard, fast, and strong. 

I didn't want to leave my husband, but staying and enduring the disrespect and disregard of my expressed needs and boundaries would have meant guaranteed collapse. Mr. PNU and I discussed options and he encouraged me to leave in order to cope. I scrounged together cash I've been saving for our upcoming Christmas and rented a cheap cabin on the Oregon coast for me and my children for the coming week. After considerable prayer, my husband addressed his parents about our concerns this morning. From his report they are beginning to understand their misstep. My fingers are crossed that on my return they will genuinely apologize and we can open a meaningful dialogue that will give room for the needs of me and my husband, and the health and establishment of autonomy of our marriage in the context of the extended family.

Until then, this is what flight look like.

Friday, June 26, 2015

Selfishness

If I disappear for the next week or so it's not like I haven't made it clear that I warned everyone it was going to happen. It's not like anyone does what I need them to in order to make my life easier. It's not like I'm obligated to do what anyone else needs me to do to make them feel good about not doing what I need.

So we'll all be a little selfish together.

Thursday, June 25, 2015

Questions I would put to my grown children

And now, how will your life be?

Will you purchase your happiness, your living thrall?
Will you ravage the confines of your timely shell, and suck up the pulpy marrow that sludges the dark place within your living bones?
Will you press your ear to your own heart until its very last beat?
Will you horror the planet with your ignorant gaiety?

Will you thrive on crushing smaller souls through taxi windows with your pitying eyes?
Will you sleep, confident in the lucre that pads your safe passage?
Will you eat without reflection, and revel in the flavor of fatness?
Will the grain of fabric always rest comfortably against the curve of your elbow and ribs?

Will you have what you need to sleep without remorse?
What are you willing to lose?
What could you survive?
How much will you care beyond your own capillaries and wandering ardent thoughts?

Will you scoop up the earth and sift the coarseness of history between your knuckles?
Will you try to become something more than your pulsing bag of wanting meat and bone?
Will anyone remember?
Will anyone care to remember?

What good will you be?
I am so tired.

Monday, June 15, 2015

Trajectory lines and how it will be


Five weeks ago, Mr. PNU's neurologist at the hospital took me aside and explained what he believed was our projected outcome. He drew a graph, much like the one above, to illustrate expected recovery time and possible physical and cognitive gains. Except, on his graph he drew several lines of trajectory, referencing the fact that while stroke is common, outcomes are diverse. 

He plotted my husband's line beginning much lower on the Barthel Index—somewhere around the 10 or 11. Based on the first three weeks of observed recovery in the hospital, the doctor drew my husband's rate of increase over the first 12 weeks peaking around the 12.

It was easier then to just suck it up, nod, and begin preparing for the remainder of his lifetime in the nursing home. I can't explain why. Those first three weeks I pulled off with a stoic grace I didn't know I had. Now, as we come to the end of the first two months of recovery and the curve of our trajectory line is beginning to bank toward its eventual resting place, I'm experiencing frantic jolts of dread, and I sometimes catch myself thinking, This can't be it.

Mr. PNU and I lay in bed for a long time last night, talking about how far he's come. For the first week or two, I thought he might drool for the rest of his life. I learned that I had no problem wiping his lips and kissing him if that were the case. We've moved beyond that. Then I thought the feeding tube might be his future, and I learned I had no problem showing affection if that were the case. Again, he has regained the ability to eat soft foods, and we've left the tube behind. Next, I thought we might never read together again, and I found he could still delight me with his wit and intellect if I was the one reading the words aloud. Mr. PNU is reading Taylor's Sources on the Self on his own, Plato's Apology with me, and still lets me be the one to read passages from the Book of Mormon each night. Right now I suspect he may be in adult briefs for the rest of his life since moving him to a commode takes at least two people and considerable effort. And I have learned that I have no problem holding the plastic urinal so that he can urinate in bed without a mess; nor do I mind being the one to clean him and change the brief if necessary.

Reality says our lives can continue this way, and this may be it, even though no one wants it to be so. 

But I wonder. What gains are possible in the next four weeks? Will Mr. PNU continue to require the help of two strong people to get into a sitting position, to get into a wheelchair, to stand for a minute and thirty seconds? Because as long as this is the case, he can't come home. I'm not physically strong enough to do the work on my own. His therapists are already concerned that I may injure my back moving him about by myself when aides and nurses don't come when called. And a home health nurse is more expensive than keeping the private room at the nursing facility.

Four weeks remain before the banking line tapers to a plateau and we can reasonably define the "it" for the rest of my husband's life. 

So of course I'm considering wild options for possible recovery benefit. Omega-3s, vitamin B complex, radical supplementation, medical marijuana even, anything to keep that line pitching up and to the right. Of course I am. Because at the end of the next four weeks, I'm the one who is wife and life companion to the man who lays in a nursing home bed all day feeling as though he's only half a human—and that simply cannot be.

Thought experiment

Let's say, hypothetically speaking, that you have a seventeen-year-old son, with whom you have a really good relationship. Said son goes through a rough patch and then admits to you that he's experimented with marijuana. Because you are concerned about the implications of illegal drug use, and because, hypothetically speaking, you may have had a nasty drug habit of your own until 1996, you try to encourage him to stay clean. For the most part, your son complies. 

Let's say, hypothetically speaking, that you have someone near and dear to you who has a massive stroke, and that because of the severity of this stroke your loved one goes to live in a nursing home. Because this person's faith is important to them, you go out of your way to facilitate your loved one's participation in religious observance at the nursing home. After three or four weeks of helping your special someone to attend meetings, you are hypothetically approached by the branch president and his first counselor. In the course of your conversation, the first counselor mentions that he hopes your state will soon legalize, because that would be a great benefit to stroke patients. Hypothetically you stop and say, "Wait. What? Marijuana is beneficial to stroke patients?" And the first counselor in the branch presidency says, "Yes."

Let's say, hypothetically speaking, that the evening nurse at the nursing home is a clean cut, heavily tattooed, empty plug-holed young man who looks like he might be comfortable discussing the possible benefits of medical marijuana for stroke patients. So you ask. And maybe this kid knows a few people back in his home state where it's legal and he agrees to ask around for info as well as look a few things up for you online. 

Let's say, hypothetically speaking, that with the recovery trajectory you've been given by doctors and only four weeks left for major gains, trying medical marijuana simply can't hurt, even if it isn't guaranteed to help, because some stroke patients have seen improved connectivity in neural pathways and brain plasticity following use. And, hypothetically speaking, there's nothing else pharmacological that anyone has offered your loved one that might facilitate improved function.

Let's say, hypothetically speaking, your son knows people who could hook you up with an eighth. And the night nurse is encouraging you to give it a shot. And even though it's still not legal in your state, your loved one is willing to see what it might do for him. And let's say, hypothetically speaking, you have an awesome recipe for brownies.

So. Hypothetically speaking. What would you do?

Friday, June 12, 2015

Eight weeks encapsulated

These days, I catch myself caught up in virulent anger toward monstrously unjust social systems that most people either pardon outright or never think to question: the exploitation of adjuncts in American academia, the defunct American medical system, the inescapable trap of poverty and welfare in capitalist democracy, the common religious belief that righteousness equals prosperity/happiness/wellbeing/health.

And in quieter moments, I wonder at the endless connectivity of the human body with its universal environment. I think I'll write about caring for the body someday. 

In between, I never intend to not write, but there must be time for sleep.

Longterm plans seem a luxury so extravagant that mindfulness is suddenly a convenience rather than an unmasterable skill. 

"For now" must be good enough for now.













These days, I catch myself caught up in virulent anger toward monstrously unjust social systems that most people either pardon outright or never think to question. And in quieter moments, I wonder at the endless connectivity of the human body with its universal environment.

In between, I never intend to not write, but there must be time for sleep.

Plans seem a luxury so extravagant that mindfulness is suddenly a convenience rather than an unmasterable skill. For now is good enough for now.

The sabbath and its requirements for worship has saved me from my usual restlessness on Sundays. I rise, prepare myself and my children for our Sacrament Meeting, and then, once it is over, I leave my ward to dress my husband and assist in the process of moving him into his wheelchair so that he may attend Sacrament Meeting with the tiny nursing home branch. I am still a grumbling mess of questions that are never answered in Sunday School or Relief Society, so the task of seeing to Mr. PNU's desire to worship soothes my inability to overlook doctrinal inconsistencies and the problem with platitudes.

A friend of mine, who's just entered the last third of his mission to Portugal, emailed me a few weeks ago with a quote he heard direct from Elder Bednar at a regional conference in Europe: "There is no doctrine other that what Jesus Christ has done for us, and what we can do for him."

I cling to this when contradictions crop up, and they do.

For the rest of the week there is a Tuesday-Thursday-Saturday shower schedule by which I mark off the passing of days. I insist on being the one to care for my husband's bathing needs. And though this process takes anywhere from one to two hours start to finish, I relish each step in the meditation of cleaning the body.

First, I change into shorts, a sports bra, and a t-shirt. Next, I undress my husband and help the aides to transport him by human forklift into a bed-like apparatus on wheels, called the bath boat. I have assembled a number of hygiene items into a large mesh bag that I sling over my shoulder and then wheel my husband into the shower room. We have a favorite shower stall. Here I lay out the body wash, the shampoo, the bath gloves, five towels, two wash clothes, and a bottle of cocoa butter lotion before turning on the water. Once a week I use an electric razor to shave his neck and trim his beard first. Then I test the stream, running it over my own leg before turning it onto my husband's chest with the handheld shower head. He inevitably gasps each time even though he knows the water is coming. I drizzle the soap over his limbs and carefully lather, loosening any flaking skin with the gloves, scrubbing the human stink from his armpits, and then rinse the suds away. I wash his face and neck, groin and buttocks, and then remove the gloves to lather his hair with shampoo. I take extra time massaging his scalp and the back of his neck, leaning over him until my breasts brush his face and he lifts his head to kiss them. Finally, I rinse his hair and any remaining soap from his body before I turn the water off and begin laying fresh towels over his wet, exposed skin. He lays, swaddled for several minutes while I pat everything dry, and then I wheel him back into his room. An aide helps me transfer my husband back into bed, where a bath sheet is laid across the mattress to protect it from getting wet. The aide helps me to finish the drying and to tuck a new brief beneath my husband's buttocks, and then leaves me to dress him again. I slip the affected limbs into the clothing first, then adjust shirt and sweatpant openings so that Mr. PNU can finish pulling on each article. We use the different settings on the adjustable bed to facilitate pulling shirts down and pants up as the aides have taught us. I comb through my husband's philosopher-length hair, and bring him a toothbrush and spit cup for oral hygiene.

Once I've cleaned the bath clutter from his room, return items to the shower room, and taken soiled linens to the utility room, my husband is usually eager for me to sidle up next to him in the adjacent adjustable bed. And I do.

Thursday, June 11, 2015

Grief

Mr. PNU is improving enough that, because he now recognizes the extent of his deficits, he's begun the grieving process for what he's missing and what may never come back. I held him for several hours tonight, wrapped myself around his body, and tried to offer words that both validated his pain and fears, and also offered encouragement and hope. There is no kind way to tell someone not to be discouraged when his life now is nothing compared to his life two months ago. I've yet to discover the best way to point out positives when my husband only wants to be clear headed, maybe sit up in bed on his own to reach a glass of water, or possibly take a walk with me in the cool of the evening without the involvement of a wheelchair. He tells me over and over that he's trying not to be selfish. 

Friday, June 5, 2015

My mailbox runneth over





Letters and packages arrive on the days I least expect them, but right on time with when I need it most. Thank you for more than competing with the bills, and for lifting my spirits when finally I lay down alone at night.

A little over a year ago, when I was driving Mr. PNU back to his car after a Thai lunch he shared with me and another of his Ethics and Values TAs, he confided in me that when he wasn't teaching, and when he wasn't with his daughter, he lived a solitary bachelor's existence of weighted loneliness. I blurted something like, "Well then, you can hang out with me!" And though I didn't pursue more with him for a few weeks because, well, ethics, I promised the universe then and there that I would do everything in my power to remove that aspect from his life for however long I had the chance. Our courtship was short because we belong together. He's even admitted now, rejections to hard determinism and interventionist deity aside, that he's certain God was pulling strings to help move us toward each other. For both of us, finding this sort of companionship makes every heartache and all the loneliness beforehand make sense. 

The stroke, however, still doesn't make sense. It is hard and cruel, and I'd like to say that because we have each other, the hardship is bearable. But, there is an irony in coming home to a bed occupied by pillows stuffed into Mr. PNU's t-shirts. My husband would be here with me if that were possible, and similarly I would never leave his side. Thankfully, there are good people, selfless people everywhere. And luckily, so many of them have my mailing address.

Thank you, each of you. Every single one.

Giving up on perfection


Mr. PNU likes to write about how great I am. Let me explain why I let him do it.

I've bungled a number of situations in the past few weeks, stepped on toes, hurt people's feelings, dropped balls, screwed up royally, barely slid to the plate a few times. When I said early on that I knew dealing with this life change was going to get messy, I had no idea how right I was.

I try to remind myself that this is my first experience with debilitating stroke, and that I have no idea how to do it any better than I am, but I worry frequently that my lack of tact and general dislike of confrontation will have irreparable outcomes. Like my husband, I hope people around me understand that I'm trying to be a good person, even when I fail at delicacy with others' emotions. In the past six and a half weeks, where I may have been a stellar wife, I have absolutely had moments of sheer mediocrity in the role of daughter, daughter-in-law, sister, sister-in-law, mother, stepmother, friend, and acquaintance. Even though my husband won't admit it, I've not been perfect at being a wife either. I wish I were better at life changing events than I am. 

What I am good at is realizing that in stretching myself seven ways—between my children, my step daughter, my husband, and care for myself—I am absolutely dependent on the grace of God and the atonement of Jesus Christ. From the moment I wake up until I fall exhausted into my bed at night I pour every ounce of energy into the roles of wife and mother. I've given myself an hour of daily gym time to maintain my physical health, but otherwise, except when I'm laying here in bed blogging (which you'll notice hasn't been happening much on the SSW end), my waking time is completely expended by my efforts to do all that I can do for the good of others. At the end of every day, my merits don't matter. I look down at myself and see that I've always left something undone, something I should have done. I always feel I've failed somewhere. I always have to pick up some raveled end of the knitting and try working loose ends back into the project.

What I'm realizing is how unexplainably generous God is in giving us the benefit of the doubt. What I'm realizing is how unjustified any of us are in judging the works, or the lack thereof, of others. We simply have no idea what anyone else is up against, or how hard they're working at getting right everything we don't see when we focus on their faults. What I'm realizing is how often I need to keep my own judgements in check, because if I deserve any slack robbing the same from those around me is negating that miracle in my own life. 

A few months ago after thorough study of Greek verbs, I was altogether too pleased with myself that I'd figured out that the KJV translation of Matthew 5:48 was horribly incorrect. Once the tense, voice, and mood of the "be" verb in Greek is taken into account, and once the original meaning of τέλειοι is understood as "fully developed/complete" rather than "perfect," the scripture reads as a result of acting on the preceding prescriptive passages of the Beatitudes: 

"Therefore, you shall be fully developed/complete even as your father in heaven is fully developed."

Note that in translation from the original Koine Greek, being fully developed isn't something that is commanded right now. The "be" verb is in future tense, meaning it will happen at some other, undesignated time. Also, the voice is middle rather than active. Future tense verbs don't have a passive voice, but the middle voice is translated as passive, which means the action of "being fully developed" isn't something that the subject "you" does as it would if the verb were active. The action happens to the subject. Once the steps are taken to live a life following the example set forth by Jesus Christ in the preceding verses, the active participant is brought to full development, but not on their own. Full development can't be achieved by anyone based on merit. That status is a gift. It is received through grace and atonement, after we have tried lived lives of selflessness, kindness, and charity. But not because of those actions.

Even without taking all of that nerdy technical ancient Greek into account, I cannot offer anyone perfection. I can wring myself out every day of my life, living like I am now, giving and giving until I haven't a drop left to offer, and I still won't get there. And if I only treat people with this consideration because I think it will earn me perfection, I've missed the point entirely. I'm not doing all of this because I believe there is a reward in it for me. No one should. Still, I try to perfectly love my husband, my children, my family members, and my friends. I like being good to people, offering help where I can. But I'm not great at it all the time. And some of the time, I too am human, and then I get caught up in living terrible, messy attempts that few would mistake for love, and no one would call perfect. 

And so I've given up on perfection, except for trying. 

If my husband only sees the good in me, he is so much closer to perfection than I think he imagines, and further along the path to full development than almost anyone else I know. He will protest my assertion. He'll tell you his cognitive and physical deficits make him unworthy. As if floppy limbs and a drooping smile could some how disqualify anyone from the same god-given slack I'm hopping to receive as soon as I log off for the night, pray my meager efforts will be enough, and call Thursday an imperfect day.

Thursday, June 4, 2015


My husband wanders lost on social media after I kiss him goodnight. Tonight, he called me at 11:30 and asked why I hadn't told him we were relocating to Wyoming in the fall. I asked him how he'd cooked up the idea and he told me it was written beneath a picture I'd posted of the two of us cuddling in bed, paying the bills. And perhaps that is where he encountered the information, but it wasn't directly affixed to our image. Rather, a friend of mine, a fellow poet has been accepted to grad school in Laramie, and this evening he shared the news with the Facebook world. 

I explained the mixup to my husband, helped him through the steps of pushing his call light, asking for an Ativan and help putting on his CPAP, and then wished him a goodnight.

This evening I breached the topic of post-stroke apathy. 

Monday, June 1, 2015

I noticed early on that we were a spectacle, and I knew it was nothing lasting; just the latest sensational story in Facebook feeds.

After the initial hype died down and people started realizing that our story was going to last more than two or three weeks I started to get the dysfunction that comes from being the tragedy "it" couple. The attention we got in the first few weeks was enough to bolster us into the really tough phase of the stroke, and then, largely, the excitement wore off. We had to figure out how to be married with a stroke, how to live in two different places, how to balance a relationship when one of us is now responsible to facilitate almost every aspect of that relationship, how to be co-parents, sort of.

This is where I'm sloppy at carrying the task I've been handed.