Sunday, January 31, 2016

She tells me 15 feels important

And I said, "It is. It's half way to thirty."






Ghosting the crisis brigade

Desuetude takes effort. 

I've accumulated five or six rarely-visited social media haunts, and one or two that haunt me. Over the last five years my accounts have either languished through periods of half-hearted neglect, or sprung into manic resurrection. But I tire of the jumbled clutter, and over the last week I took to the various "settings" icons with metaphorical steel wool and Comet. Like a maid whose visa is about to expire, I scrubbed the corners of my online presence. 

There were too many curious onlookers whose initial crisis brigade enthusiasm dwindled over the last nine months toward loosely disguised disinterest or slack ambivalence.  

My cleaning frenzy is an act of ghosting intruders.

I have no desire to take part in sensational celebrity or trauma fame. 

I'm certainly not here to maintain ratings.

Friday, January 29, 2016

Why I won't be at the Blue and Gold Banquet next Tuesday

I've attempted to explain the difficult nature of the caregiving lifestyle to a handful of individuals on the outside. Last night I firmly told one of my son's Scout leaders that expecting me to attend the Blue and Gold Banquet next Tuesday during "me" time was simply out of the question, and that I would remain strictly defensive of the time slot regardless of pressure to support my son by being present for the award of his most recent merit badges. This leader left assuring me that he understood, but his alarm was unmistakeable. I had told him that while I viewed LDS Church activities for family as providing excellent opportunity for wholesome outlet, these activities tend to crowd into our family's life and complicate the delicate balance we are struggling to establish in the face of severe situational re-landscaping. For every call given by LDS Church leaders to simplify family life, there are enough religious programs, award systems, and enrichment activities to choke the possibility of simply breathing.

This is what I'm talking about.

My hardest days are the ones where I wake full of energy, ideas, and a headful of plans. By 3 p.m. the energy is depleted, the ideas a dull mud pie in the back of my mind, the plans surrendered in exchange for twenty minute catnaps before the second shift of my sixteen hour days.

Monday morning I woke an hour and a half before my husband, got my son ready and off to school, took out the garbage, started a load of laundry, set out Mr. PNU's clothes for the day, set out mine, and dressed for the gym. Annie, our personal care assistant, comes Monday, Wednesday, and Friday to help with Mr. PNU's shower, dressing, hygiene, and breakfast. This gives me an hour and a half of free time three days a week to exercise, shower, and prepare for the day. The other four days of the week I take responsibility for my husband's basic needs, or ADL—activities of daily living. Our Annie-days also feature noon physical therapy. I must pack or plan for our lunches, and at 11 a.m., once I've showered and dressed, I load Mr. PNU into the car and drive the thirty-five miles to Sandy for his tri-weekly appointments. The commute takes 45 minutes. We arrive with 15 minutes for car-to-wheelchair transfer and bathroom needs. Today I stopped to get a cup of decaf for myself and a post-cholecystectomy donut for my husband; his first since the surgery. Our therapy sessions generally last an hour and a half, and by conclusion Mr. PNU is spent. There are four wheelchair/car transfers in the coming and going to Neuroworx. Some days I stay with him the duration of his session. Others, I rest in the family waiting area. Mondays, on the way home, we stop in at the medical clinic for our weekly INR to test blood clotting time. On Fridays we go straight to the Pie Tin to participate in a weekly behavioral science think-tank with Dr. Matthew Draper. By 4 p.m. we're home, I'm starting evening meal prep, and Mr. PNU is reading. Our children come and go. There is homework, church activities, social engagements, parenting, and general household minutia to attend. 

We eat. I tidy up, throw another load of laundry into washer and, or dryer, take care of my husband's toileting needs, and occasionally crack open a book, or find a film on Netflix. Usually, by 8:30 p.m. Mr. PNU is winding down. He reads for hours in his chair, and for another hour or so once I help him into bed. I give him his handful of evening meds, and he reads Lord of the Rings aloud to B— for half an hour. By then both son and husband are ready to sleep. At nine we listen to B—'s prayers. I tuck my son into his bed, prep Mr. PNU's CPAP, and kiss them both goodnight. For an hour, sometimes two, I lay in bed and wait for the day's bustle and exhaustion to seep out of my bones, and for sleep to slip in to take its place. The alarm is always set, and as long as my husband sleeps soundly I do too. But Mr. PNU rarely sleeps through the night without knocking the CPAP mask loose, needing the urinal, waking to an aching back or a spasm in his affected leg and arm. I am almost always awake at 4 a.m. for one reason or another.

Tuesdays and Thursdays I rise at 7 a.m., get B— up for early morning choir, and move laundry along. I do my best to prep for the day, breakfast, setting out Mr. PNU's clothes and mine, before I wake him at 9 a.m. I feed him breakfast and give him his handful of morning meds. We shower together, a process that takes on average an hour and a half to get into the bathroom, undressed and in the shower, his neck shaved and beard trimmed, both of us cleaned and shampooed, dried and dressed, combed, deodorized and teeth brushed. By 11 a.m. we are in the car on our way to the Pie Tin, where this past week we lectured together for an hour and fifteen minutes on virtue ethics to his class of twenty-five university students. When Mr. PNU's colleague is not overseas working on peace-keeping efforts, they share lectures. The husband/wife teaching dynamic is a different flavor than philosopher/philosopher teaching. I think eventually he and I can fine tune the former to the point that I will be able to effectively provide the support necessary for my husband to continue carrying a course or two of his own per a semester as long as I mind organization of syllabus and take charge of the grading. At 1 p.m. we have lunch at the cafe counter in the Pie Tin library and then swing up to the philosophy department to socialize with whomever might be available in office until 3 p.m. On Thursdays we drive back into Provo for an hour of talk therapy before heading home. Car-wheelchair. Wheelchair-car. Each transfer means lifting the sixty pound chair in and out of the back of our Kia. Each transfer is a juggle of bags, equipment, human limb, a here-we-go-round-the-vehicle game. Dance-like. Choreographed. Muscle, joint. Balance and heft. Our act certainly must look easy by now, well rehearsed. We get curious looks from passersby where at first we got offers of help. I got the routine under my belt by politely turning them down.

What I haven't detailed are the doctor's appointments, which invariably crop up to fill any downtime that seems to exist on the calendar at the beginning of each week. Surgeons, neurologists, GPs, endocrinologists, urologists, hematologists, lab work, etc. There are phone calls to providers for appointments, and to billing representatives to managed account balances. There is discussion of course materials and how I can better help my husband in the classroom. There is housework, car upkeep, bills to pay. My Christmas tree and decorations are still on display, gathering dust, displaying the dust they gather. I think about packing it all back into boxes and into our shed, but by the time I have time my energy is spent. At 6 p.m. on Tuesdays, Abby comes to sit with Mr. PNU while I go out until 8. On Thursdays, Muchan comes from 7-9 p.m. On Saturdays, Muchan comes for a five hour respite period from 11 a.m.-4 p.m. I try to squeeze all the reading, writing, shopping, children, socializing, and rejuvenation I can from these nine hours. On Saturday evenings my husband and I go out on the town, visit the Temple, or simply prepare for the Sabbath by laying in bed side-by side, exhausted, thankful that God has given us another day, and that there will be more days to work through beyond the coming day of worship,. And once our Sunday meetings have concluded, sacramental covenants renewed, and spirit rekindled, I am altogether grateful that salvation is not dependent on avid, eager participation in Boy Scouts of America, and that by the grace of God I am somehow making it, week by week.

Sunday, January 17, 2016

The things we can live without


My husband had little to offer me when we married; his friendship and his tender passion for me and philosophy. In some regard I think we were worse off than a couple of crazy kids who unwittingly jump into each other's lives for the long haul without the foggiest idea of more than idealism.

He was poor. I was poorer. We had five kids between us and a couple of decades of bad luck apiece. A month or so before our ceremony his sister called to tell me she had a couple of old rings she'd like me to choose from, since we weren't officially engaged if there wasn't a ring. I've faithfully worn the beautiful gold band she gave us since the day I put it on. His ring is a $30 sterling silver Walmart special (and I wore it on a chain around my neck for four months after the stroke while I waited for the edema in his affected hand to subside enough to slip it on his finger again.) This is how a philosopher and a poet marry—in grand romantic style. We came together, because we couldn't go on living apart. Because we were willing to acknowledge all of the other comforts that we might aspire to separately we could live without.

I think we thought we had nothing to lose.

He apologizes sometimes. Says things like, "I know you didn't sign up for this." And I snort and laugh, and maybe give him my best look that replies What the devil are you talking about? without saying a word.

He tells me often that he needs me to hold and reassure him that he's enough of a husband. I stroke his lovely brow and point out that he's my best friend, that I enjoy laying around with him reading and talking and sometimes just sitting in silence. I mention the implied nature of his dependence because he is wheelchair-bound with hemiplegia, and that, yes, when I agreed in our first set of vows to love for better and worse, in sickness and health, I had no idea these circumstances were in store. But by our second set of vows, I wheeled him up to the altar with full knowledge of life after stroke and the indictment of life with acquired epilepsy. I knelt across from him and said yes to anything else that might come before our exit call, and to everything else we look forward to after our term of endurance. And then, in order to seal our eternal companionship, I lay my body across that altar to reach him, and I pressed my lips to his sweet mouth knowing that there was sacrifice in my cards.

It's sometimes disarming how unbelievably happy I find myself amid all this uncertainty, desperation, and hardship; such a strange and blissful juxtaposition. I still chuckle to myself when I remember our Stake President asking me whether I was still in love with Mr. PNU some months after the stroke. I'm sure in many ways our staying power baffles a lot of people. I admit to maintaining my romanticism. I truly think love can conquer all, but that doesn't mean there won't be a good deal of work involved in the process of loving fiercely, completely, well. Ease is something I can live without. My husband is not.

Friday, January 15, 2016

Neither is the man without the woman


I freak out when strangers try to separate me from my husband, or insist that I should allow someone else to care for him when we are out and about—specifically in LDS temples. It might not be such a big deal to me, except that it's happened three times now in three different temples. 

Draper. Timpanogos. And now at Provo City Center.

I should probably be more patient with those who are unaware of our situation, of my husband's ongoing health issues, of my necessary role as his caregiver. But temples are not exactly emotionally "safe" places for me. Too many traumas happened there during my last marriage. Too much tiered language exists there that reflects the oppression and control that existed in both my childhood and my last marriage.

And when I say I freak out when this happens, I mean I really lose it.

When Mr. PNU and I visited the Draper Temple the weekend of our anniversary, I panicked when we were first told I wouldn't be allowed to assist him during the endowment session. Every time we've attended the Provo Temple I've been encouraged and thanked by officiators for caring for my husband in such a way that he is able to participate in proxy ordinances, and during our own sealing. I don't understand how policy could be different from temple to temple, and I broke down in front of the Draper temple workers who were trying to take my husband from me. Even though the Draper Temple President eventually came and assured me that I was fine helping Mr. PNU, I cried for the next hour.

At the Timpanogos Temple on our last temple trip of 2015 we were told policy mandated that I neither sit next to my husband, nor assist him during the session. I insisted that at both Provo and Draper I'd been allowed and encouraged, but the temple worker returned from speaking with the Temple Recorder, and affirmed that he spoke for the Temple President in holding fast to the rule of gender separation in the ordinance. As I was ushered away from my husband, I chose not to protest. But I was an anxious wreck the entire session, and once we were reunited at its conclusion I broke into tears in front of everyone in the Celestial Room. We will not return to the Timpanogos Temple unless we hear policy has changed.

My husband doesn't like being referred to as saintly, but Mr. PNU is the only reason the temple is the least bit comforting for me. There is not a kinder, fairer, gentler man. While we are both puzzled at the tiered nature of the genders in the temple, he considers me his equal and treats me accordingly. He would never use the language of the temple ordinances against me. I know there are other LDS men also willing to assume the genders are equal, but my husband is the first I've been intimately acquainted with who could dominate in our relationship—but doesn't.* 

A week ago I managed to reserve tickets for 11 a.m. this morning, the first day of the Provo City Center Temple open house. The week that followed was rough. Sunday, we went through a second grand mal seizure, and Tuesday, Mr. PNU finally had his gallbladder removed. Between biting his tongue so hard mid-seizure that it bruised and swelled to fill the left side of his month, and pain and oxygen desaturation after the surgery, neither of us thought he would make it to the tour. The night before I'd arranged for a ward member to sit with him while I took my kids. But at 10 a.m. today, after showering him and feeding him breakfast, I couldn't see the sense in leaving him home to be in pain, when I desperately wanted him with me. I suggested I put him in a dress shirt and tie, and he agreed to try. With desaturation comes portable oxygen. My kids took turns helping me juggle wheelchair, husband, and oxygen tank into our car. We drove the mile to our gorgeous new temple, parked, and unloaded. We were each given booties for our shoes, and the oxygen tank cart and wheelchair wheels were coated in saran wrap.

We watched an informative film on LDS temples prior to the tour. It was filled with men and women of all races, both young and old speaking of temple experience and the importance of sealing ordinances in LDS doctrine. Elder Holland quoted Corinthians 11:11: "Nevertheless neither is the man without the woman, neither the woman without the man, in the Lord."

I understood those words in a new way today. In a way I wouldn't without the constant need to be at my husband's side.

A tour volunteer offered to push the wheelchair so that I could hold Mr. PNU's hand and focus my attention on the finished temple rather than on navigating the twisting corridors and hallways as his driver. She assured me that he and I could stay together. My daughter, L—, offered to push the oxygen. The other children went with the able-bodied tour, while this volunteer, my daughter and I became well acquainted with the elevators. The completed temple is astounding. I don't believe there is another one more beautiful in the world. And this, the Provo City Center Temple is our temple. We are within its district, a mile from its doors. So I won't let the morning be spoiled by the fact that halfway through the tour, as we turned a corner, I was suddenly harangued by another volunteer, urgently insisting that I go with the able-bodied tour since someone else was pushing my husband's wheelchair.

In my sudden confusion she shot at me again, I had to follow the RULES!

I looked at my husband waiting for me to join him in the elevator and back at the bossy volunteer trying to separate me from him. For a moment, just a moment, I panicked. It seems strange to me that with the recent push for recognition of the sanctity of marriage between man and woman over other unions, that heterosexual marriages sealed in the temple aren't more hallowed and respected within the rank and file. I shook my head at the woman spouting her insistence of the rules. I turned my back to her and stepped into the elevator to ride up to the Celestial Room with the only person who's offered me safety, equality, and real protection in this Church.


*Most temple-going LDS people privately note that there is gender disparity in the temple language even though they are unwilling to discuss that fact openly due to the sacred nature of temple ordinance. I've studied, prayed, and researched, and there are no good answers why. We have D&C 132, and a few purported accounts of historical second anointing. It seems, at present, a sort of celestial checks and balances approach to keeping married couples in line. Otherwise, I can't account for the temple gender narrative.

Wednesday, January 6, 2016

Shifting star charts

I put us up to this experiment. Don't let me get away with whining.

Of all possible options, keeping my marriage strong, focusing on my husband's recovery, sacrificing everything I've worked toward for myself was the only way I was going to sleep at night. During the weeks leading up to yesterday afternoon, abandoning my own dreams and aspirations, at least for a season, seemed the best choice. I'm the one who decided to take a semester off, who told Mr. PNU that I'd like him to aim for two or three lectures a month, asked his department for the opportunities, arranged the meetings with his colleague, scheduled the week accordingly around the proposed Ethics and Values section, pushed him to commit to his name and email address on the syllabus he is co-teaching with a tenured member of the philosophy department this Spring. I get him up in the morning. I shower, medicate, dress, and feed him. I pack a philosopher's bag, put on his coat and wheel him out to the car. I drive him to campus, set him up in his classroom, and take notes for him. He is happy as a clam, and, except for the professing, pretty much along for the ride.

And with this choice to spearhead a professional leap of faith, I've started feeling less material. Ghostly. Like a holy force, pushing the wheelchair around campus. Hardly visible. Almost forgettable. Like inertia. If I begin to dissolve behind my husband—if at the end of each day I'm so exhausted that doing anything for myself is absurd—it's my own doing. Nonsensically, I remind myself, this is what I wanted.


On Tuesday I wheeled Mr. PNU up to CB 406 where he teaches this semester. The room is  across the hall from the English Department, and the wall outside his classroom is dedicated to Touchstones Journal. The display is a new installment and I took note. Along with a selection of artwork, Universal Surnames: An Elegy to Argo Navis is framed and hung as a representation of the University of Humble Pie's poetic work. Perhaps this is why I am experiencing the thinning out. In some sense I've become someone, written something that is far more indelible than the hand that wrote it. And ironically enough, I've created a name for myself. Now, if only for a few months while we proceed with this experiment and continue to aggressively pursue therapy, I fear she may disappear.

Don't let me get away with whining.


Saturday, January 2, 2016

How an introverted caregiver spends her free time on Saturday afternoon


The caffeine squeal in my ears has gone on for days. It fills up the space carved out by the Provo Library on University Avenue after the librarian at the reference desk hangs up her call, and continues to ring octaves above the hum of the florescent lighting. Pages turn. Somewhere, deep and unseen on another side of the templed hollow, doors close. A young child babbles against the rules and then fades off behind the elevator doors. A ding. A cough. A book replaced on a shelf. The hinge of another mysterious door, closer this time, announces its existence. 

Quiet here is not the absence of sound, but attention to it.

I read another paragraph, making note of the black shape of the font and the tack of the page. Texture in language, texture of the object, textured images on my brain canvas painted by symbols for sounds that symbolize these encouraged illusions. The boy next to me is as rapt by his comedic novel Let Me Off At The Top! as he is by his phone. I watch him fail at reading and attention, and I notice the muffled engine of an accelerating truck on the street through the glass behind me. Pages continue to flicker, throats clear. I hear the inhalation and exhalation of air inside my nasal cavity. The points of perception begin to graph themselves on my brain canvas now, and I am matrixed, pinged in space by the confluence of all these vibrations in the quiet. It becomes a roar really. A subtle rolling orchestration. Like Debussy chromatics or Grieg’s colloquial chords. I am conducting a an unscripted string quartet on my timpanic membrane. Breathing. Rustling book jackets. The elevator’s chime. Another cough. Jeans against green upholstery. That timbre. One distinct from polyester slacks against a rust brocade armchair in another state and not in a library. Newspaper crackles and the soles of shoes scuff against industrial carpet. The carpet fibers are ecru and gray and buff and olive. I try to hear the old man’s pen against his legal pad, but he’s too far off. My fingers against the keyboard obscure my efforts. The librarian types also, loudly and importantly. I try to hear the plant fronds, and instead I note the heavy thud of a child’s boots as she runs after her mother across the floor on the level below me. Her mother has made her selections, and the girl clomps in her boots, long dark blond hair stringing around her face and frizzing in the static left by the comb when her mother last tried to untangle the locks yesterday. Her boots are red. The coat she wears is oversized and gray. Her legs are covered by brown tights. I can’t quite see her dress, but there was a battle between her and her mother over whether it was okay to wear the dress for the third day in a row. I’m assuming the little girl won.

The librarian picks up another call. I ignore the details. The florescent lighting oscillates and warbles on its pitch, like the choir ladies with bluing dyed hair from my youth. The upholstery of the choir seats was pink and the nubs of fabric loops forming textural checkers rubbed against the backs of my legs when I got away with no tights on Sundays like tomorrow. A balding gentleman with sensible black lace-ups and a BYU sweatshirt sits across from the boy who now seems consumed with his book by Ron Burgundy. The boy chuckles. The balding man opens a magazine to an article on super flares. The long gray strands of his eyebrows arch over the tops of his glasses as he reads, shifts the magazine, pops the binding just so. Someone clears his throat, or deep enough that it might be better referred to as his esophagus. I imagine it must have been flavorful, and realize that I don't know the flavor of other people's phlegm. I am okay with that. I think about picking up my own book again. The boy has refocused on his phone. Mr. Burgundy didn’t hold his attention for very long. I exhale and toss my right leg over my left. My hip splays to the right. I lean left, cock my head right, S shaped in my chair. S shaped like a Saturday afternoon. S shaped like the swirl of oxygen through my nostrils and the carbon dioxide the plant fronds suck off of me. We're attracted to each other, but I still can't hear what it might be saying. The library is far too loud for that.

Friday, January 1, 2016

Irresolute


Goals. 

I like making New Year's resolutions about as much as I like form Christmas letters. I'm framing goals instead, telling myself that's somehow different, preferable, more prone to success. Somewhere truth rings a marginal bell.

Here goes:

1) Figure out how to break my Facebook addiction, because my need to check in and click 'like' a few times to feel like I'm not evaporating from my social scene is out of control. I wake up at 4 a.m. every morning even though I have no desire to be awake at 4 a.m., and I am overcome with compulsion to check in. Notifications have too much bearing on the wellbeing of my soul. I have no conclusive plan for how to pull off the chains of social media oppression, but there's my big first goal of the year. One must declare a starting location.

2) Read books, not online articles. Books. I pulled Harding's Tinkers off the shelf a couple of days ago. I also pulled down my copy of Japanese Death Poems, Joan Didion's The Year of Magical Thinking (again), and Momaday's The Way to Rainy Mountain. The stroke spared my husband and killed my attention span. That's what I tell myself. I read a chapter here, a few pages there, then I'm back to combing the internet for articles on passing fancies, or not so passing fancies. I miss books, but it's going to take work to get into and through them again. This requires ironing out my nerves and persistence. That's big goal numero dos.

3) Write. Not just blogging. Publishable material. I've got at least four ideas bubbling for personal essays, two for academic research papers, and an orphanage of lines that want enough skin grafting to count as children within poems. James Franco has a book of poems, for crying out loud. What is my excuse?

4) Get my three incomplete grades changed so that I can apply for scholarships and start classes (or class) again in the fall. This is a huge goal. Important. Necessary, since I have no business taking out more loans for school and a single 3-credit class runs $880 a semester. You know, when I started my bachelor's degree in 1994 a full load of classes cost about $1200. That was 12+ credits. Now a full load is $2700. Adjuncts don't have health insurance. I want you to think about that—for a while. 

5) Get over winter. This damned season does a number to my energy levels and sleep cycle every year. I'd like to manage sleeping, all night long, from 11 p.m. to 7 a.m. Is that really too much to hope for? What gives with the sun and northern hemisphere November to March anyway? It's lame. You'd think that with how hard humans work at climate change we could manage to adjust winter light levels as well. 

6) I should have more goals. Five is a paltry aspiration. But I'm afraid for now I'm itching to check Facebook, and maybe after that, read some articles. I'll have to give my plans for the new year some more thought. I'm certain something will come to me, probably at 4 a.m. tomorrow morning, or perhaps late spring. And then, I'll write that goal down too.