Monday, May 30, 2016

If God doesn't give us more than we can handle, He must think I'm freaking incredible

Hard week. 

Hard.

Third grand mal on Tuesday, mid-lecture on consciousness and neuroscience. Yeah, that weird. Also, I'm not blaming myself, but I am taking responsibility for the breakthrough event, since I failed to stock my husband's medication tray with his anti-seizure meds after I refilled the prescription two days before. Two missed doses in a day, morning and night, is all it takes to get the electrical storm in his brain sparking. I lectured straight through it, instructing the students what they were seeing, helping them remain calm until the paramedics arrived and my husband flew off toward the ER without me. I'm getting far too good at managing crisis. The social workers at the hospital kept coming back, waiting for me to crack, until they just stopped checking on me because I was the one reassuring them that everything was okay. CT scans show no new damage. He got up and went to therapy the next morning out of defiance. Fighter-boy. That's who I married.

Thursday, while pursuing official volunteer status from the university in order to procure a travel grant for a Criminology conference in New Orleans where a paper co-authored by Mr. PNU was accepted for presentation, we were informed administration at the Pie Tin doesn't approve PhD adjunct volunteers on campus because it's "exploitative." Because the Pie Tin would never exploit its adjunct staff. Rather than lose our opportunities with the Integrated Studies and Philosophy department by giving the names/departments/course titles to the woman questioning us, I waived my hand in front of her face and said, "Jedi mind-trick. We are not the droids you're looking for." And then I wheeled my husband quickly across campus away from the administrative offices. She probably thinks I'm nuts. I'm still trying to figure out how to fix this morass in order to secure our place on campus. I may be a little crazy, but I'm not stupid. It has to be dealt with, and unfortunately, the situation is likely going to give me an opportunity to practice *cough*my ultimate strong point*cough*—diplomacy. 

Saturday, I got a bill for $12K from Social Security, due immediately. The explanation for why this is even a thing is so convoluted, you're just going to have to trust me that one's trials can amount to indomitable absurdity.  

I woke this morning with a headache. 

Our kids were off celebrating the holiday with Ex. No. Awesome and his family at a cabin by a lake, somewhere four hours north-eastish. So Mr. PNU waited patiently while I nursed the throbbing in my head with Diet Coke, a couple Tylenol, and four ibuprofen. Finally, I gave up and threw in the give-a-care towel.

I packed the Kia with a cooler lunch, several drinks, the cane, a urinal, the wheelchair, a couple of extra shirts incase the temperature dipped, and my husband. We drove into Provo Canyon and spent the day in the mountains surrounding the Alpine Loop, sometimes talking, sometimes silent, sometimes accompanied by 80s New Wave. I got out every so often to run up a trail here or there to take a few pictures, and then brought them back to the car to share. We ate our lunch at the Aspen Timpanogos trailhead, and then drove over the summit in search of a connector portion of the Bonneville Shoreline Trail that is purported to be paved. It never turned up, even after asking a forestry employee. (I don't know how she got the job. She'd never heard of the Bonneville Shoreline Trail. How can a Utah forestry worker not know about the Bonneville Shoreline Trail?) We reached the end of the Alpine Loop, at the mouth of American Fork Canyon, and debated our options.

Mr. PNU promised that Cascade Springs boasted paved paths and boardwalks—at least it did when he visited last, twenty years ago. He was certain I would like it, he said. I agreed to give it a shot, and we backtracked several miles to the summit where State Road 92 forks toward the west.

The rest of this story is that I've had the loveliest Memorial Day in memory. We left the dead to themselves, closed the doors on the painful past, and instead, soaked in grace.

Today was a "worth-it" day. One in which, when at the same time I am tried, I am also richly blessed.





Saturday, May 21, 2016

The philosopher's wife answers the interview questions


Caregiving has a numbing effect, the way it requires all of one's energy, all one's thoughts, demands singular focus on the now. Mr. PNU's processing capacity is compromised by his brain damage, mine is compromised by caring for him. I realized that today as I sat in my front room drawing blank after stuporous blank at every question posed by VideoWest curator and interviewer, Doug Fabrizio. I have so little opportunity to distance myself from the present that I'm nearly unable to derive meaning from the experience. 

But I've been pondering all day, and I think I know now how to respond.

Give me an idea of the average day.

I wake early to squeeze what personal time I can out of every morning. In these hours I must fit reading, exercise, daily hygiene, and a few light household chores. From the moment my husband wakes until he goes to sleep I'm at his side, keeping him active every day. I keep him fed and clothed. Maintain the business and financial side of our life. I do it all. If he's walking somewhere, it's because I've planned ahead, helped him stand, supplied cane, and except for therapy I'm walking beside him to steady him if he teeters. If he teaches a class it's because I've contacted his colleagues to arrange schedule and teaching opportunity. I'm there to lend support when brain damage inhibits his abilities, to pep-talk him through anxiety spells from hour to hour, to help him communicate with his colleagues when he's slipped into passivity. I remind him of upcoming tasks and plans, keep his calendar, get him to appointments, take him to activities, support his religious activity. Sometimes I forget how much I do because I am the director and most spectators are watching my husband after I've given him the cue, wheeled or walked him onto the stage, called "Action!", and captured the footage that his fans adore. I'm done feeling despair over dissolving into the stroke recovery lifestyle, but I still often feel just as transparent to many onlookers. The three days a week I get scheduled time for myself are always overbooked with other areas of responsibility and thirsty selfhood that I am unable to maintain while I'm steering Mr. PNU's boat. Those parts of life—parenting, poetry, my friends, faith activities, academic projects—are each terribly underserved. I'm exhausted much of the time, mentally and physically, so that my free time is spent sitting somewhere quietly, staring off into space. Mr. PNU is in bed by 9 or 10 p.m. Some days I'm asleep next to him. Some days it takes me hours to lose consciousness.

You'd only been married six months when this happened. You must have thought at some point that you didn't sign up for this, it wasn't in your plans.

Yes. Early on. Three months or so after the stroke when I was scrambling to redefine the marriage post-stroke with a husband whose newfangled passivity left me alone, vulnerable to others' expectations, and feeling very out of control in my new life situation. It was terrifyingly threatening. I left for a week with my kids. I thought about divorce. I also felt I may as well stab myself in the heart if that were my final decision. I came back, wrapped myself around him in his nursing home bed, and I've not thought about ending the marriage since. I do wonder about eventual decline and the end of his life. I worry about having to put him back in a nursing home at some point. I wring myself out stressing that dementia will take hold of what is left—he has noticeable memory lapse from time to time—and that I will dissolve into non-recognition. I'm a late acquisition. As memories go, the most recent are first to depart. 

But even before that, I also wonder what would have happened if he weren't married to me? What if I had left? How long might he have lived? How might everyone else have responded differently? Why didn't they respond that way even though I didn't leave? I'm still here by choice—not obligation—but perhaps my role is seen as obligation by everyone else. I don't know because very few people actually talk to me about how they are processing my husband's stroke. I think it's a taboo subject to some extent. My mother and father-in-law were heartbroken for Mr. PNU. They are both deeply grateful for my work and for how I love their son. I know that. But I still wonder if the entire family wouldn't have simply collapsed over this tragedy if I weren't here to do the work necessary to salvage a life for my husband. Or if he would have been left in the care of strangers. 

Neither of us signed up for this. Neither of us chose this. But I did choose him—personality changes aside—and I keep making that choice every day. 


What does it mean for you to care for your husband, for you to give up your plans?

It means struggling for wholeness, and for a definition of wholeness. Am I whole because I'm completing the parts of him that are gone? Am I whole when I'm able to take an hour to myself? I haven't worked out those details yet. But I didn't fall in love with my husband because of the plans we'd made. We made plans based on the love that is the foundation of us. If that foundation can be protected and maintained, the plans on the top can change almost indefinitely and I won't feel like I've lost life's vital elements. This struggle is the hardest task I've ever confronted. It changes me every day, demands that I remain malleable and useful and selfless. We didn't chose this path, but the point of life is the path. I tell Mr. PNU that our life together is an adventure in learning what we can do. If discovery is the plan, then I'll never be eaten alive by feelings of failure over lost expectation.

Sex. He once stopped you mid-act and asked if your love-making were charity sex. Do you remember?

Yes and no. I've never made love to my husband out of pity. But I worked so hard to give this aspect of his life back to him as early on as I could, and every step of the way took extreme patience and love. If those two things aren't charity, I don't know what is. I recall moments where, because I wasn't expressing my own needs, my feelings were hurt, or he expressed self-doubt and that hurt my feelings too because our sex life and its continued health was so precious to me. Now, a year later, though highly unconventional, it's great. We've refined new approaches and techniques. In some ways, because we must trust each other explicitly, and communicate more openly, it's better, more thrilling, more satisfying, more deliciously sacramental than the six months of astronomical sex before the stroke. I relish his body. He relishes mine. Salvaging our sexuality after stroke definitely contributed to the continued wellbeing of the marriage, and to the wellbeing of each of its participants.


When did it sink in, what life after stroke meant?

February. I finally confronted the grief that pre-stroke Mr. PNU was not going to return, and that I was beginning in some regard to forget who that man was. My lack of anything to show for my extensive investment in education slammed doors of opportunity on me with alarming effect, and I shut down, left Facebook, withdrew from my friends and supports, hunkered down in my winter of disillusionment. I grasped the ongoing, uncertain sacrifice that accepting the role of caregiver dictated, understood that I would lose part of myself in the tradeoff of sharing the remainder of my husband's life, and began to feel as though the two of us somehow bled together into a marital entity, both completed by and also greater than the sum of its parts.


Tell me the love story.

One night, during the four months we dated, we were on the phone an hour apart, both of us outside on the lawns of our respective culs de sac looking at the same sky. We couldn't stop gushing and sighing. I sometimes laugh at how drunken on hormones we both were; the dopamine was so overwhelming still. I asked Mr. PNU to look deep into the darkness between the pinprick points of light that usually catch lovers' attention. I told him that I thought the sheer magnitude of our love then was enough to fill that space—in between the stars. That phrase "between the stars" has made several appearances in our relationship since, like a signature marital slogan. And I still feel like that for him, believe it or not. Sure, the champagne bubbles in my belly aren't as profuse, but I look at him and feel myself go soft all over again at the core. And I also believe in the last year we've graduated from the Milky Way cluster. Now we need the multiverse.

You wrote: I've considered what it would mean to lose my husband so many times that I'm resigned to the fact that I am not in control. Talk about that.

We never know when our time in our bodies may come to a close. I don't want to live with regret that I didn't suck the joy and the potential for beauty and love out of every moment I have to spend with my husband. No amount of work will keep him here when his time is up. I don't know if I believe in ghosts, but there's no better way to be haunted than to take a human being you love for granted only to lose them. I've come to understand the necessity of surrender in this life. And though I'm not finished, I'm learning to allow the love and the gratitude for what time I do have to soak into every corner of my experience. I'm learning the pairing of the bitter and the sweet.

Sunday, May 15, 2016

γίγνομαι

This summer, Mr. PNU is co-teaching a course on the probability of a technological singularity and the ethical considerations necessary to prepare for imminent artificial intelligence. I read the material, tag along, comment when I feel the need. But my summer obsession is FamilySearch.

My husband says I have the spirit of Elijah. I tell him, "No, I have my spirit."*

He's correct, however, in that this Native American family line, through my father, my grandmother, my great-granddad, his birth-mother, Josie Vincent, his birth-father, John Adams, and John's mother, Almira, will not leave me alone. I come upon one fascinating bend after another, and all of it contains elements of the painfully traumatic. This trauma occurrence seems harrowingly multigenerational, but along with each of those agonizing events comes beautiful resilience. I catch myself in awe of everything these grandmothers and grandfathers endured. Strings of crisis. And possibly I, myself, wear some of this in a kind of genetic necklace. My own story parallels my ancestors' in haunting fashion. I relate to their pain and loss somewhere deep and molecular. 

I am tangled up in mid-1800s birth records and census information from the Great Lakes region, trying to locate a lost birth-father—a great-great-great-grandfather, who may also be my great-great-great-grandmother's rapist. I am hunting through facets of her likely agony, wondering if it's time to get genetic testing done for myself and my living paternal grandmother in order to fill in the missing pieces. 

In the meantime, my prayers for understanding of eternal life and resurrection are answered in images that bear endless repetition, or the fibonacci sequence, and I sense my place in time as a touchpoint for all instances both forward and back. I reflect on the fragility and wholeness of now, and the fullness of every breath past and future. The mind's eye explodes in visions of circles—a multiverse of pattern and possibility. All this comes into being, through me. Like an optative dream, their aorist voices echoing and reverberating into a future less vivid. 

The effect is wonderment.







*Mr. PNU's rejection of a soul separate from the mind is another matter, another blog post entirely, but I hope the humor in this exchange isn't lost here.

Tuesday, May 3, 2016

Flying lessons

Tonight, I pass off the pilot’s role, but the idea is basically the same. 

We engage in passing through. Me, forever in love with the boy beside me. Forever looking back, wishing for longer days. And he? He photographs every destination we reach by car. Instagrams these pinion points in time. Like frozen wing beats. He seems just as willing to move toward what’s next as forget where he’s been. We’ve only been on this highway three times since he's taken to the wheel, but he's growing more confident, and the cruising gives way to open hearts and divulgences once he stops worrying about his mirror checks and all things behind him. 

Tonight we pull into the Spanish Fork River Park and wander along the bank as the brilliant day ebbs, pinches the corner of the horizon, flickers a startling end to late spring. 

I tell myself these drives aren't so different from the ones he and I took ten years ago, he as boy and I, young mother, seat-belted into a hand-me-down Plymouth Voyager pushing the vehicle’s limits on our private getaways. We wound into the Targhee forest to peer at owls among the soaring lodge poles, or picked our way through the wetlands of the Menan Butte in hope of spotting snowy egrets and sandhill cranes. Cohorts, searching the failing light for some winged thing. 

And there he was, with me all along. Ever southbound. Departing, one joyride at a time.