Thursday, December 31, 2015

Farewell to the last forty

Twenty-two years ago, a grizzled, Jewish WWII veteran wearing a terrycloth robe, beret, and bed slippers smoked cigarettes with me on the balcony of the Northridge VA Hospital in Los Angeles. He spoke to me in a rich Brooklyn accent and said, "Life is a biblical journey. All you need is a destination and forty years to get there."

I was forty for two years.

In retrospect I realize that the phenomenon, completely my own doing, was an awkward mistake. But it did happen. I went straight from age thirty-eight to telling everyone that I was forty, because as far as I was concerned thirty-nine was a dreadful age to be. I didn't relish the idea of a year spent worrying about turning the big Four-Oh. In 2014, if someone asked, I told them I was forty. And then, on the last day of that year, I in fact turned forty. Rather than continuing to skip my actual age for the next annum I spent 2015 telling the truth.

My kids forgot. My husband forgot. And I missed out on thirty-nine, which any more doesn't seem like such a rough age. 

I took a final forty-year-old selfie yesterday afternoon that some might believe encapsulates arrival after years of wilderness wandering. My husband tells me that rather than failing to achieve or to reach a clearly defined destination, my life is littered with evidence of my priorities and sizable triumphs along the way. 

Today I am finally forty-one.

A few days ago, I took my oldest son on a midnight drive out to Utah Lake. We talked about choosing a path in life, orienting on becoming. I told him if he comes to a place where he decides there is need to change goals, rerouting his course and throwing himself headlong into the work of progress is completely acceptable. My son used to ask me, sometimes with frustration what I "did", probably because I've decided on a dozen course changes since his birth. For a long time I sense he was ashamed that I wasn't like other moms. I didn't exactly stay home, and I didn't exactly work full-time. My jobs and projects have shifted over the last twenty years around my chosen focus—childrearing—which is completely obvious to me now even if it wasn't while I was midcourse. And perhaps, during that time, it seemed to my son that I did nothing. But as he enters adulthood and we look back together, the evaluation is rich with inclusions and activities that have shaped my kids as much as they have me. Those years are an accumulation of music, theatre and visual arts, dance, poetry, philosophy, hiking, photography, volunteering, teaching and mentoring, editing, entertaining, spirituality, friendships, and continued growth and learning in every imaginable discipline. 

No, my life is not without mistakes. Many of them. But even those can be mined for wisdom and insight. Openly accepting responsibility for my faults has taught my kids to feel safe being human; that there is no shame in admitting blunders. Mistakes can help refine the angles in our course correction, and give shape to character. If anything, (you read it here) I am a character. I am as proud of my bruises as I am the muscle I've built. And so,  I encouraged my son to embrace the bravery necessary to begin becoming. In doing so I acknowledge for the first time that in these past forty years—plus one—that I've afforded myself the opportunity to get messy trying everything I wanted to put my hands to.

And it's not as though I've come to the conclusion of this life experiment just because the texture of all this becoming is finally producing a patterned cloth. There are at least a dozen more course changes to come. I'm not so young anymore not to recognize that this animal is set in her ways. Let's check in again and take stock in another thirty-nine. We'll call that our final destination.

Tuesday, December 29, 2015

Notes at the end of raising a son


I have two grown children.

I feel like someone else must have typed that sentence. I'm filled with strangeness and questions.

Where has it all gone? Where is the boy child who nursed so long at my breast? Where is the little one who used to fall asleep facing me each night with a tiny hand pressed to either of my cheeks? Where is that scoundrel child who at barely two years of age unlocked a garden gate, crawled beneath barbed-wire fences, and crossed a pasture with horses looming over him in order to jump on the neighbor's trampoline? Where is my three-year-old so distressed by the change in his parent's marriage that he ran away and hid beneath the computers in the public library when my back was turned so that I spent half an hour frantic that I'd lost him? What happened to the darling bespectacled boy who was delighted by dinosaurs and all things Tolkien at four? Did he even go to kindergarten? I forget. And where is the little artist who chalked magnificent evening landscapes at six, and won drawing contests until he decided the competition wasn't for him? Where is my sullen, angry boy, hurt by injustice and turbulence at seven, eight, and nine, who prayed for a brother each night? What happened to the child who felt the world through the eyes of a frightened animal, so that he couldn't eat meat beyond his tenth birthday? How many dance steps for freedom and joy in those eleven and twelve-year-old feet? Wherein were the emerging gymnastic spring and natural head over heel spin? Why in my memory can I only barely recall the years he fumbled with clarinet and finally took up the skateboard? How now the images he pens? From what source does his music now rise, the insight in his thoughts, and the moments his tempestuous spirit finds occasioned calm? From where his maturity, his willing service and kindness? 

I've lost the years we spent searching for snowy geese in the Snake River wetlands and owls in the forests of Targhee. I'm missing the nights I spent holding him to my heart to hush the over-active imagination fueling his terror-filled dreams. I can't remember the last time I cradled him as less than anything fully grown against my neck. 

The Lord has given me a Man.

Saturday, December 26, 2015

Staring contest

Sometimes you can't deny 
the happiness staring back at you.
Sure, life's hard, and it's nothing 
like you imagined it would be.
But it's really not so bad.
And it's alright to be good at living a hard life well,
or at least well enough.







Monday, December 21, 2015

Silent night


Over the last eight months I've noticed similarities in behavioral quirks between Mr. PNU and my youngest son, B—. Autistic spectrum disorder sometimes lacks interpersonal interface. My husband's brain damage often produces the same disconnect. 

Where we used to communicate with no breach, there are now chasms. Where he used to have impulse filter, there is now only enthusiastic lack of inhibition. Sometimes our interactions are less the sort one would expect between spousal peers, are more like exchanges between a parent and a toddler. One of the biggest challenges poised by this new life is that I am trying my hardest to respect my husband's autonomy, while he has lost the ability to organize his desires into the context of his near complete dependence on me. 

Sometimes I get swallowed up in the demands of fulfilling his wants, and the individual that I am begins to dissolve and disappear. The hardest part of this emotionally is that so many people want Mark to live a "normal" life. They want to see him achieve his goals. They want to see him overcome his trials and limitations. But very few people seem to understand that I am being sacrificed in order to make these things happen. 

Mr. PNU wants time to read his entire library. I have no time to read. Mr. PNU wants to return to teaching. I find I must discontinue my education to meet the demands of his return home. Mr. PNU wants to write and publish articles. I am stealing a few moments while he's in physical therapy to write for the first time in weeks. 

I'm asked frequently if I'm taking time for myself, but I'm uncertain where that time is supposed to come from, and no one offers to help to give me extra hours.

I grow weary of hearing people claim that everything he's able to do now is because of miracles. Such statements erase my efforts and ignore that I am dissolving in order to support the illusion of divine intervention. And to be perfectly honest, he's still completely dependent on me regardless of the miracle of slow but sure progress he makes each week. We're still locked in the odds. Nobody's triumphed. And praising be I think absolves people on the outside from the responsibility of supporting and crediting me to get done what they cheer about. 

All this aside, I woke this morning very happy to be married to my husband. He loves me more than I've ever felt loved. He is patient with my lack of sufficient energy to bring about his every hope for every day. He wants to communicate with me, even when he doesn't, or when he can't. Even within his limitations, his kindness and determination give me the encouragement to keep going. But he is changed. He is not the man I married. And my burden is heavy, and the sorrow and loneliness is sometimes deep.

Monday, December 7, 2015

When zero equals everything else

Urology lab work came in this morning. 

Mr. PNU has testicular failure. We're not having any kids of our own. I'm sad, and I'm calling fair, fair. If my husband can't realize his dreams of providing, why should I have my dream of being a mother again?

So today, I'm thankful for the indemnity clause in A Proclamation to the World:

"Disability, death, or other circumstances may necessitate individual adaptation."

And once that's included, the PW simply instructs Mormons not to be jerks, and to take good care of one another. That leaves plenty of room for everyone to put in hard work. Now, I'm going to sit here quietly in the family waiting room at Neuroworx and ponder on the possibilities this opens that I haven't yet given enough thought.

Sunday, December 6, 2015

Light gives light


Mr. PNU turns 48 this week. On Tuesday.

We lit menorah this evening for the first time, commemorating a year of wonder, and hardship, and the room both make for miracles. 

Tomorrow we meet with our second surgeon for a cholecystectomy pre-op. Our neurologist insisted we have the procedure done in town where my husband's neuro team is located, which required that we switch surgeons. She's also insisted that we see a hematologist before she'll give clearance. As of this evening that means we have to push the operation back into January since the hematologist had no openings prior to the middle of next month. I'm trying to stay cool about the implications of dealing with surgery at the same time I'm beginning a new semester. Of course I'll hit the phone first thing in the morning to try and keep our December 14th operation date, but I'm just one woman and the team of doctors I must coordinate to pull the procedure off at a convenient date is a half dozen. 

Our latest development is in my husband's endocrine system. 

After his grand mal seizure, the neurologist noticed nodules on Mr. PNU's thyroid and ordered an ultrasound to confirm. There are four, just large enough that she said she'd like to keep an eye on them and repeat imaging in six months. That was early in October. We put the matter aside until a couple of weeks ago when my husband's urologist called. He discovered elevated prolactin levels in Mr. PNU's blood and zero sperm in his semen analysis. We were referred to an endocrinologist, who followed up with another set of blood tests to evaluate for a pituitary tumor called prolactinoma, and urged us to piggyback a biopsy of the thyroid nodules with Mr. PNU's cholecystectomy. For reasons mentioned, that biopsy may happen later than we'd like. But in the meantime, our urologist laid out the possible causes for both the elevated prolactin levels and the lack of sperm, or azoospermia. There are three possible explanations. 

(1) The seizure prompted a release of prolactin, as epileptic seizures do.
(2) A prolactinoma is causing high levels of prolactin production that is inhibiting sperm production.
(3) My husband is in early stages of premature testicular failure.

Neither of these options precludes either of the other possibilities. And so we could be looking at a whole mess of further issues. Number one does not solve the problem of the nodules. Number two is treatable, but no one wants cancer. Number three is something we'd just have to accept as the end of our hope of having children together. Bottom line, my husband is in the middle of a physical mess and the end is nowhere in sight. But he is going to make it to his 48th birthday, which is a miracle unto itself. Otherwise, this love of living in the tension has its limits, and I'm struggling for surrender, but mostly I'm just tired. 

Birthday wishes are welcome. We need a few more miracles. There are seven more candles to light.

Saturday, November 28, 2015

An L. Frank Baum kind of love

It seems like the last four weeks have been filled with doctors appointments and physical therapy, and not much else. I'm getting the hang of the routine and the workload, minus any assignments for school. One class, I keep thinking, it's only one class. Somewhere in this new schedule I have to find time for writing and research. 

And in walks another medical issue.

Today I read through a report of Mr. PNU's last visit with his general practitioner. We're seeing a urologist, a neurologist, a sleep specialist, an endocrinologist, and the GP. That's an impressive array of doctors. I adore our GP. He's younger than both my husband and me, and his bedside manner is perfect. He respects my ability to research medical issues and my comprehension of medical terminology so that we can discuss issues at a clinician's level, but he also respects that although I'm sort of the spokesperson in the marriage my husband is the patient.

Our last visit was in preparation for gallbladder surgery planned two weeks into next month to answer gallbladder attacks from a stone the size of a large grape. Mr. PNU is on blood thinners for two instances of deep vein thrombosis during the summer. He'll be on the medication for the rest of his life. The problem is that blood thinners and surgery don't mix. Our tender GP described three possible approaches. The first, putting the surgery off for a couple of months and accepting the risk of emergency surgery in the interim. Second, going off the blood thinner, Coumadin, a week prior to surgery and hoping for no clots. Third, going off Coumadin, but backing it up with Lovenox, which wears off within 24 hours, until the day prior to the operation. Neither of these options is without inherent risk, and I came the closest to crying in front of a doctor as I have in seven months during the visit. My head spun with possible setbacks and complications, and for a moment all I could think was that after all this time and energy I've put into my husband's care since his stroke, I was going to lose him over a gallstone. I asked our GP if Mr. PNU and I could discuss the options privately before we made our decision, and he gave us an understanding affirmative. We left the office and headed to our physical therapy appointment at Neuroworx. Mr. PNU gave no response when I asked for his input. Instead, he told me that he wanted me to make the decision for us. I chose option three—Lovenox.

The report that came in the mail detailed the process of discontinuing Coumadin, beginning the Lovenox injections (which I fear I'll have to administer), and then resuming the Coumadin after surgery until the blood's clotting time returns to an acceptable level when we will then end the Lovenox injections. I've entered the dates into the calendar on my phone and hung the hardcopy letter on the fridge. 

My husband's health conditions were enumerated at the end of the report. Benign essential hypertension, choledocholithiasis, DVT, hemiplegia, hyperlipidemia, major depressive disorder, and partial epilepsy. I read them off, one by one, wondering how we went from planning a 150 mile hike of the Bonneville Shoreline Trail in early April to where we are today.

Mr PNU's forty-eighth birthday is in ten days. I'm throwing a small party with his friends at the pizza joint where I gave him my phone number a year and a half ago. Does it seem like a whirlwind of events played into that day's advent, and like a whirlwind of events have spun out from it? A perfect tornado of sorts, sans the flying monkeys and magical shoes. 

Tuesday, November 24, 2015

Variations on ability

The last three weeks marked the beginning of an experiment 
in what my husband can do.


Walking from bed to the bathroom still requires assistance, 
but Mr. PNU is strong enough to lower himself safely to the floor 
once he's ventured away from the bed by himself. 

After this incident the therapists at Neuroworx 
focused a week and half of practice 
on floor to chair transfers so that next time 
we'll be capable of getting him back into bed
without having to call the home teachers. 


Mr. PNU can fold towels.


Mr. PNU can keep our son's attention for half an hour with The Hobbit. 

The only other thing that keeps our son's attention for half an hour is Minecraft.


Tonight, Mr. PNU booted up the Xbox 
and after an hour of trial and error devised a strategy 
whereby he can operate the controller 
to play Skyrim using his right hand and his chin.

"My only problem is slobbering on the left control.
I hope I don't get a disease from it."


My guess is that he won't and that there is much more to come.

Sunday, November 22, 2015

Hindsight, foresight, and all things in the future


Thirty-one weeks post-stroke, I woke to my third Saturday as a full-time caregiver. 

In some regard, having Mr. PNU home with me greatly cuts down on my stress. I'm in control of his care, and therefore it is done well and with love all of the time. In the sense of workload, I've noted a drastic increase in physical strain. My energy levels are frequently taxed, as are my arms, back, and shoulders. The therapists at Neuroworx have told me the only way for me to get over the hump of adjusting to the strain is to rest. And so I put my husband to bed by 9 p.m., and we both sleep long hours every night. Sleep is a beautiful healing tool. We both grow stronger.

Every so often I've noted incidents in our story that line up like crosshairs of fate. The less superstitious will find these kooky. Even I am willing to call them coincidence. All the same, they are odd.

In April 2013, almost three years ago, I sat through my husband's lecture covering the work of Peter Singer vs. Bonnie Steinbock on animal ethics. Why justify animal testing of pharmaceuticals over utilizing human subjects if intelligent animals are just as likely to suffer as those found within the margins of human intellectual disability? The debate is filled with terribly uncomfortable tension. I left after the lecture and ended up in an alcove outside the Liberal Arts building in tears. But first, my husband confronted us as his students with the very real possibility that each of us might experience deficits in our lifetime that would rob us of cognitive function that separates us from other animals. As example, Mr. PNU volunteed that his uncle had suffered a stroke that caused vascular dementia prior to his death.

He looked at me directly, blue eyes piercing me as if in challenge. "And so I have that in my genetics," he said.

My husband doesn't remember the exchange, but it's crystalized in my memory and I've returned to it often in the last seven months. I was his student then, not his TA. Although he was always cordial in our student/instructor exchanges, we weren't friends. I knew about his work in psychiatric ethics and was already enthralled, but I was doing my best not to act too interested or even inadvertently flirtatious. I'd taken up sitting on the back row half way through the semester when I suddenly found it too uncomfortable sitting close to the front of the room and either attracting, or not attracting his direct eye contact. A clear swath of empty desks lay between where I sat on the back row that day and where he stood when he'd made the statement—there was no one else in his line of vision. Why I was so struck by his admission I can't say. But at the time, it felt personal.

I remember defensively thinking: Really? You think I'm going to be scared off by that? Even though I wasn't in a position to pursue my interest in him then, nor would I be for another year. And now, here we are. 

In March 2015, before this whole life-altering set of circumstances went down, I'd begun hiking Rock Canyon solo again. I floated through the first few months of my marriage in a happy delirium that felt too good to be true, and I took to the mountains looking for God, direction, or maybe just some glimmer of guidance to position my helm toward whatever came next. There's something about an elevated heart rate, how it facilitates iambic pentameter and prayer. We weren't getting pregnant even with hearty and vigorous attempt. Although it didn't feel right to stop trying, immediacy in timing seemed essential to my plan for degrees, my ambition for a career, for projects, and future plans for our family. And if consecrating my body to the service of God and the care of His children wasn't the big plan, then what was in store?

I dared ask. In the quiet forest my heart pounded, my iron breath burned in my lungs as it mingled with the unseasonably warm spring wind, and the stillness of the canyon answered with a steadying peace and certainty that whatever lay ahead, it was the plan and I would be capable. Though we still aren't sure why Mr. PNU's body went rogue after 47 years of fairly consistent health, and though I hate the concept of God's omniscience, there were harbingers of stroke. These last three weeks I've thought a lot about my husband's lecture, and about those last hikes before the final time I fell asleep in both of his arms. I'm still not scared, and in some ways I appreciate the heads up from the universe. 

I read what I've just written to my husband who's laid, resting in this bed next to me for most of the afternoon. He takes me by the hand, looks at me with those piercing eyes, and says, "Mostly because of you, I'm not scared either."

Saturday, November 7, 2015

Thresholds

I've been preparing to write this post for a long time, even before yesterday's announcement of LDS policy change regarding same-sex marriage and the children of same-sex unions. I've vacillated on this post's appropriateness, but today I'm compelled by the pain I feel, and out of concern for closeted LGBT youth and adults in the midst of LDS congregations.

Tomorrow, those of us within the faith who've not given up on holding to the rod will meet together for Sabbath, to worship our God and our Savior, to renew covenants to attend to commandments, to comfort, love, offer charity, and lift our fellow humankind. Spiritually, I need tomorrow's meetings more deeply than I have in quite some time. I need comfort. I need to feel my Heavenly Parents' love for me. And I'm even more terrified for the tender hearts of those closeted members who will sit in silence and hidden pain, because if social media is any indication of the rhetoric they'll encounter, I fear they'll leave feeling empty, downtrodden, and hopeless.

I'm calling for a deeper respect and civility than I've ever before encountered at Church. We have more LGBT members than I think anyone, even our bishops, might suppose. And while the policy toward those in same-sex unions and their children might have changed, none of us is unaware that homosexual acts have never been acceptable within the LDS Church. We know. 

By "we" I mean LGBT Mormons like myself. 

I came out of the closet in 1993 as the "B" in LGBT; a 3.5 on the Kinsey scale (because I can answer one of the questions both ways.)  While I'm obviously in a committed heterosexual relationship, and I live the law of chastity with careful attention, I do experience sexual attraction to women and I have since I was a blooming adolescent. My husband and my children know. A few of my bishops have known, and they've been pretty chill about it as long as I wasn't "acting out." My parents and step-siblings know too, but they've exhibited cold and derogatory language toward same-sex attraction around me to the point that it is clear that I'm expected to stay in the closet and take humiliation if I want to be part of their family. This is one of many reasons I choose not to be part of their family. My closest straight friends know, and my LGBT family knows. I'm more comfortable around queer folk, even in my heteronormativity, than with any other social group. They get me. I get them. Even though I'm not seeking homosexual relationships, and even though I possess conviction to follow the tenets of a faith that creates numerous complexities for me personally and socially. 

Why I've made the decision to pursue heteronormative relationships is personal, and not the point of this post. This post is about those standing in doorways.

I sometimes feel that I live as part of both the LGBT community and the LDS community as a threshold participant. In my early 20s, after choosing to only act on my heterosexual attractions, I almost retreated back into the closet. But I can't deselect my orientation, and so I sometimes feel stuck between two halves of my heart—unable to be completely true to myself with anyone but God. Because of this tenuous situation within two communities I find myself participating as an advocate and ally for LGBT youth, whether they choose to stay in the Church or not. I find I can listen without judgment and that in many instances I can offer comfort that they don't find anywhere else. The choices they make are theirs. My role is to comfort and console when the children who come to me share their brokenness. I've found myself filling this role for 18 years, and I've met and associated with young people who are now near and dear to my heart; so much so that I consider them family. 

Let me share not just from my experience, but from theirs, that sometimes the misunderstanding about same-sex attraction within the LDS community lends a severity to the tension between self and God that becomes harmful. Sometimes fatally so. Things said by straight members, even within the context of gospel standards hit hard. When I was young, these statements were enough for me to realize that I didn't fit in at Church the way my straight counterparts felt they fit in. It created a kind of deep-seeded self-hatred that isn't what God intends for anyone. And these unloving, uncharitable words, meant to proclaim righteousness, ripped me apart a little more every time I heard them. It didn't matter if I was acting on my attractions or not. I felt hideous, deeply wicked, and unworthy. It's only been within the last few years that I've come to understand that those feelings were not from God. 

While I've spent my life developing a relationship with my Savior and my Heavenly Parents, and though I feel deeply loved and accepted for what and who I am, there are a multitude of lost children who aren't there yet. Every time I enter the temple I take three concerns: my present woes, my search for the divine feminine, and a greater understanding of what God intends for His queer children. Every time, without definitive answers, I have felt an outpouring of love and radiating compassion for those souls. Not just for faithful LGBT Mormons, but for all of God's queer kids. We are loved and valued, and I wish more straight Mormons understood both that and the precariousness of life in the Church as an LGBT Mormon.

Like so many of my fellow saints, I don't understand the Church's new policy yet, and that present confusion and lack of understanding hurts me deeply. My young LGBT friends and family are aching as well, and I feel a certain culpability for their wellbeing. I know that the only way I'm going to get through this part of the challenge is to lean on God and trust that all will be well, and I'm assuming the same will be the case for them. 

Imagine them come together with us tomorrow to stand at the door and knock. Never have they so hungered to be called in from the doorway and allowed inclusion in the body of Christ. Never have they needed the tenderness and charity of the Savior's atonement to fill the actions and words of their fellow members. They are searching and hoping, some of them perhaps limping along on a final thread of faith. Let kindness and comfort be our standard tomorrow rather than reproof. Let us welcome them instead of insisting there is no room in our inn as they try to spiritually and emotionally sort out a place in the fold. Let us encircle and protect the delicate hearts of our youth (any of whom could be LGBT youth) whose blooming sexual orientation is sometimes confusing, sometimes alarming, and also so sacredly personal and personally sacred. Finally, if defense of the family is the present mission of the Church, let us protect and defend the spiritual journey of our precious young LGBT brothers and sisters standing like wallflowers before the sacrament bar waiting for our example to tell them if they belong. Let us open our hearts to these threshold children and create safety for them within our chapel walls. Let us help lead them in love to the arms of the only One who truly understands their trials and the beauty of their peculiar hearts.

Sunday, November 1, 2015

Twelve things I've learned in the last six months

1. Instead of a funeral, I had six months of the first year of my marriage in a nursing home. And that was an awesome alternative.

2. I know what double pneumonia sounds like, how to detect deep vein thrombosis, what grand mal seizures look like, and how to handle each of them calmly. I've also learned how to routinely tell doctors and nurses who ask that, no, I'm not in the medical field, even though I know enough to discuss conditions at a professional level.

3. I have no problem caring for human being's physical needs long after infancy. It's not as gross as everyone thinks. In fact, it's an honor and in some sense sacred.

4. Sweating the small stuff is dumb, and everyone does it. We all need to give ourselves and everyone else a break. People matter so much more than any undone thing.

5. Everyone's drama is valid. Everyone deserves compassion and kindness.

6. Being direct and firm is the best way to achieve needed change, even if it makes me feel like a bitch. Men who communicate this way are respected. I should be respected too.

7. Gratitude doesn't negate hardship, but it helps to dull the blade of trial. There's always something to be grateful for, especially for all those people who step in and help when I tell them I don't need help. (I do.)

8. There is plenty of room to find humor in awful circumstances. Dark humor is fantastic. If what we laugh at makes others uncomfortable it's because we're holding up a mirror and they can't bear to look.

9. I've been an able-ist. I didn't think I was, but I was.

10. There is nothing in my life so pressing for me to accomplish that it should take me from my husband and children when their needs are unmet. If I never write a book, or publish my best poems, it simply won't matter. Period. I'd rather be remembered for how well I love than for how well I write.

11. It's okay for me to get a pedicure, write a blog post, take photographs, go on a walk, see a movie alone, eat dinner and read poetry solo, or to take an entire day off from filling everyone else's buckets when mine is empty.

12. 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. There is comfort in letting go and letting God. Tides come in. Tides go out. Nothing stays the same. And that's okay.

Saturday, October 31, 2015

The philosopher's wife


I'm working through the language of eternity—the giving, the receiving. I am my husband's only wife. A few months ago, when I found out that Mr. PNU's ex was seeking a sealing cancellation I drove to her house and hugged her tightly out of joy and relief. 

I lived through Jacob 2 with my second husband. Any woman who thinks she can make polygamy work for her is clueless to what it's like knowing your beloved is sleeping with other women, loving other women besides you. 

For years in tearful prayer I've told the Lord over and over that I may as well be cut off now if sharing my husband is part of the longterm deal. If God is a jealous god, I am the jealous eternal wife of a man on the divinity track who needs me to attain exaltation. The only instance I can make any allowance for plurality is in the case of death and remarriage. I've put some thought into what might happen at my husband's death. When it's his turn to slough off the conscious capsule, I'm done. He is where I belong in this life. I'd rather be alone, missing him, than entertaining the idea that anyone else could even remotely compare as a subsequent spouse. And I'd hate to think what may happen to him should I die first.

So I've entered into a tenuous commitment with God on which I'm placing my own constraints. For what my husband needs in this life, I cannot hold back. For what I need, for as long as this idea is unresolved (and it is unresolved), I am haunted by the question: Is plural marriage eternal doctrine? If the answer is yes, I can't guarantee God has more for us beyond the grave. If my God turns out to be the scriptural jerk that I fiercely believe God has been misrepresented to be, I can only hope for oblivion. Isn't this faith dance a strange relationship?

Thursday, October 29, 2015

On the eve of forever, a reality check

My husband requires constant supervision, 24/7 care. 

I know of people who leave family members this severely disabled in skilled nursing and walk away without batting an eye. Their beloved fill the halls of Happy Valley Rehab and Nursing. I walk amidst them each day. I say hello and ask how they're doing. I listen when they need a listening ear. I hold them when they need hugs. I acknowledge their pain.

I have not been encouraged to bring my husband home. In fact, there have been plenty of voices to the contrary. But he's coming home, because I believe even with his level of dependence and disability that he should be afforded the fullest possible life I can offer him.

Neuroworx is discouraging him from attempting to walk outside of therapy to prohibit developing negative habits that reinforce the left-neglect that simply won't budge, and isn't going to budge at this point. He's been told if he plans to walk, he needs to get used to discomfort. If his attempts feel stable and secure, Matt told him yesterday, he can bet on the fact that he's not using his left leg and relying on the right. No one's telling him he can't walk, but they're in his face about giving up on comfort. He must throw that notion out if he plans to ever ambulate on two feet. I sense we've hit a wall, and now I'm just standing by, cheering him on, hoping he'll find a way over it. But yesterday, for the first time, on the way home, he acknowledged that walking again may never happen. 

So I'm bringing him home, and we're going to figure out how to create a life around one-person assist and a wheelchair. Medicaid offers an in-home option after 90 days in a skilled nursing facility—New Choice Waiver. It provides 29 hours a week of in-home assistance, a hospital bed, a wheelchair, medication, and ADA implements to make bathrooms accessible. It is an option that provides the severely disabled with a home environment, plus care, if there is a family member willing to take on full-time caregiving. I am that family member.

When my husband's doctor advised me to expect to keep him in a nursing home for the rest of his life, it was because he wasn't going to ask me to sacrifice what it's going to take to bring him home. It wouldn't have been ethical. My husband has made it to the point in recovery anticipated by his evaluating physician in the hospital just prior to his discharge. He's not progressed farther. His mind is largely still sharp, but we have days that are foggy, in which impairment is noticeable, and since the seizure he's begun having marked memory lapses that I'm tracking as possible signs of onset dementia. 

The next chapter is not an easy one. But, like I told the Stake President because he had the audacity to ask four days ago during my interview for a living ordinance recommend, I am still in love with my husband. People who are in love do crazy, desperate things for the ones they care for. All I have left to spend with my husband is forever and time.

Linear event in the middle of a ball of time slush

So this is happening:


And except that Mr. PNU's coming home to stay two days later, 
it's about all I can think about.

Saturday, October 24, 2015

What do LDS men get?

I refuse to parse words—LDS culture is sexist because of our lack of understanding of the priesthood. But our understanding is getting better. In his April 2014 General Conference address on priesthood keys and authority, Elder Oaks quoted Relief Society general president, Linda K. Burton. “We hope to instill within each of us a greater desire to better understand the priesthood.” He followed this quote by affirming: “That need applies to all of us.”

I was raised in a home where weekly my father put his foot down about something and told my mother and me that he was “the priesthood.” End of discussion. The atmosphere was nothing less than oppressive. At age eleven I recall sitting in a Sunday School class on the priesthood. I rolled my eyes, probably because by then in relation to my upbringing I understood that priesthood meant I was powerless, and in response, Craig White, the boy next to me announced to the rest of the class that I wasn’t interested due to my gender, “Because she never gets to hold the priesthood.” Since that time I have repeatedly been subjected to counsel to submit myself to the will of men because of their ordination and because of their office.

I get why Ordain Women pushes as hard as it has. While I’m not in anyway affiliated with the organization and while I do not personally seek ordination, I support their effort to get to the bottom of doctrinal explanation for the continued subjugation and exploitation of women by mortal men in the name of God, and to refute that tyranny.

In the meantime, in order to maintain a relationship with deity I’ve had to find answers for myself. Elder Oaks talk, Doctrine and Covenants 121, and 2 Nephi 26 are perhaps the greatest source of comfort and insight I’ve found, and have helped me arrive at a better understanding of the priesthood as well.

Priesthood is the power and ability given to humankind by God to perform good in the name of Jesus Christ and to bring salvation to his people. That’s it. It is received by covenant at baptism by every member of the Church. Each endowed member of the Church is clothed in the priesthood garment as a representation of our covenant commitment to further the baptismal promises we made. We are promised by God in return power to accomplish that aim. Our use of priesthood is exercised every day as we seek to fulfill the baptismal covenant to act as Christ would act to serve and succor humankind both in and out of the ranks of Church membership. 

The authority to perform saving ordinances (baptism, confirmation, blessing the sacrament, washing and anointing, bestowing the signs and tokens of the priesthood in the temple, and sealings, which are extended to the human population of the whole earth vicariously in the temple) is what is given by God to boys and men ordained to the priesthood. We speak of keys. The keys to all power and authority are possessed by Jesus Christ, whose priesthood we are given the opportunity to exercise as we become his covenant children. The authority to perform saving ordinances does not give men power over anyone, simply the right to perform the ordinances on behalf of humankind to bless and edify them, and to create the connecting familial links necessary for the human family to be brought back to the presence of our Heavenly Parents. The sense some men feel that ordination gives them authority over others, especially women, directly contrasts both the purpose of the priesthood which is to serve, and the right to the gift of the holy ghost which is forfeited through unwieldy dominion. 

Presiding is to be in charge. To have something in one’s charge is not necessarily to have power over it, but to accept responsibility for its care. Again, service. Within the Church we’ve tied organizations directly to the gender-specific ability to perform ordinance and assumed that the tiered framework of the Church means that some organizations are below or under the direction of others. This vision of top to bottom effectively causes a rift in our understanding of the priesthood, which I don’t believe was ever intended by Joseph Smith. All members of the Church engaged in service to one another are participating in priesthood activity and exercising power of God to do so. Because of the structure of leadership meant to care for the children of God, there is a boundary of responsibility given to those in office rather than a place in some pyramid of power and authority. 

Rather than thinking of the structure of the Church as vertical, I would like to examine its creation from a linear standpoint. Each of us is equal to one another in the eyes of our Heavenly Parents. We all stand on the same road and it is level. The Atonement does this for us. And Jesus Christ, who facilitates equality and redemption is the first and the last. He stands a the head of the line, and at the rear. He leads us to the door as one family, and simultaneously stands behind with a safety net for those lost and wandering. Similarly, leadership within the Church means that those presiding stand behind their flock, arms outstretched, staff extended when needed, to guide those in their stead toward the Savior. That's about the extent of leadership authority, and any efforts to force the will of God toward obedience immediately forfeits the stamp of approval from the holy ghost and renders authority moot. The role of a leader is to protect, to serve, to comfort, to encourage, to lift, and to place all other’s concerns before oneself. It has nothing to do with power.

When I speak of priesthood power, I am referring to the added strength given to men and women to perform leadership tasks. And each in his or her way is a leader to some degree. What this means in relation to the Church as it exists and operates is that unfortunately we are surrounded by examples of unrighteous dominion and use of power that is not priesthood. I believe attempts are being made to address this problem by the prophet and the Quorum of the Twelve, and that women are being empowered to reject subjugation, coercion, abuse, and derision by those who assert authority where, through their actions, they have none.

What Joseph Smith intended in his ordaining of women and bestowal of keys is hard to say, because we haven't access to more than anecdotal evidence. He was a prophet, not a technical writer, and prophetic definition, because it is godly definition, seems to be multidimensional rather than straightforward. What I am certain of is that no man has power from God to force his way to do anything, or to override the agency and personal spiritual revelation given to women, or other men for that matter. If anything is done in the name of office that is not in accordance with a person’s responsibility to help others build relationship with Heavenly Parents, Jesus Christ, and the holy ghost, the authority they claim is their own and not God’s. And the exercise of force or coercion is never priesthood.

In the end, what LDS men get is responsibility equal to the responsibility given to women, and we are all given a charge to do as the Savior would do. We claim the right to exercise the priesthood, not because we are better or more important, but because we need power from God to help others become happier and closer to Jesus Christ. Because, within the body of Christ as is stated in 1 Corinthians 12:12-28, everyone is important.

Friday, October 23, 2015

Fear and faith—a tightrope act

Lately, I’ve been thinking a lot about fear.

Since the seizure, Mark isn't able to do pool therapy because a repeat seizure in the water would put him in extreme danger. And so we've been on land at Neuroworx for the last two weeks. The problem is the buoyancy and support provided by the water that aided his progress toward finding balance are hard to replicate out of the pool. I don't know if his blog posts have made it clear, but he doesn't have awareness of the left side of his body in space, even with the tingles of sensation he experiences in the affected limbs. In his mind, his arm and leg don't register as present. So his center of balance has shifted dramatically to the right; running vertically from his right foot, through his nipple, to his right eye. And accordingly, most of the ambulatory movement he does favors the right leg. 

When his therapists try to help him center his weight over both feet it feels to him as it might to you or me if we stood on a cliff with our weight evenly distributed between the right (on the ground) and the left (in midair). Our minds trigger a fear response when there isn't solid ground beneath one of our feet. We would experience the sensation that wakes us with a jolt from sleep when we dream we are falling. And yet, the therapists ask Mark to stay in that position, to feel that sensation even when he grips the bar for support and begs to be able to sit or shift his weight to the right again. That instability triggers a fight or flight flood of adrenaline in his brain, that twice this week resulted in explosive fits of rage entirely out of character for my husband. Even after grounding himself on the right, he rants at the therapist’s insistence that he remain unsteady instead of moving toward a place that his brain tells him is secure. I place my hand against his chest and prompt him to feel the objects around him and the floor beneath him until he is able to calm down against the surge of anxiety. Mark immediately feels ashamed at his reaction; he turns the criticism inward and beats himself up. It’s been a heartbreaking week, even though he tries to verbally recognize the work he’s put into each session. 

I confronted him Monday after the first outburst. I said, “You know how faith makes no logical sense? And we do it anyway.” And he nodded, because as he and I have discussed ad nauseam there is no verifiable proof of God’s existence. There is no empirical evidence to which either of us can root our belief, nor is our personal experience with what we classify as deity quantifiable or reliably repeatable so that we can share that evidence as reason for others around us to also believe. We understand skepticism. We get fear of unreliable proof. We get the mountain of evidence to the contrary. We also get the fear of looking like fools because we both are theists, both devotedly LDS.

I am not positing that the act of walking without proprioception is evidence for God’s existence. But in relating the challenge to him this way, Mark is forming the mental connections required for him to stand on both feet—it’s the same kind of leap into unresolved tension or cognitive dissonance. And he must learn to find comfort in the absence of security that we sometimes feel in our religious faith. 

I don’t know if I could do what he’s being asked to do. Even with proprioception, walking is a repetitive act of aiming at momentary balance over a point in space we intend to entirely overshoot, and then toppling over on to the other foot that again momentarily carries us past yet another point in space. Walking is precarious, as is living personal faith or belief. 

Which is perhaps why I try not to judge those who are areligious or whose experiences have lead them down different paths of faith. I’ve wandered around on unsteady legs through shifting definitions of belief and reason for forty years. I’ve found balance within my body, even though it is sometimes unsteady. I’d never be so bold as to impose my personal experiences as the only possible personal experiences. All I can do is ground myself in what I’m trying to accomplish and the relationship I believe I have with a God and a Savior I choose to believe in, even when it’s messy and I’m scared or angry. Even when the world and my surroundings seem disorienting, or make little sense to me logically. I’m not always happy with the struggle. But it’s the struggle I love. My husband and I hold each other up in this way.

What we fear most is harming others. I never want to be the person responsible for attacking or damaging the personal growth of those stumbling through their own obstacle course of development. I tend to make room and allowance for others’ beliefs and experiences both because I respect their humanity and because ultimately what I see in them seems to me infant glimmers of divinity. And everywhere around me—in my faith and without—there are testaments to charity, goodness, and truth. I readily admit, it’s hard for me not to be in love with the whole world. And so I am often a permissive parent and friend rather than a proclaiming believer. Perhaps at times, this might be read by others of my faith or those outside of it as non-commitment. Nothing could be farther from the truth, and if I am at fault in my passivity that is something I’ll have to reckon with my God. But for now, my husband’s tightrope act has me reflecting deeply on my own. I haven't made sense of faith yet, but I'm working at it, one step at a time.

Mark believes he will walk. I’m not going to stand in his way.

Saturday, October 17, 2015

The second half of marriage


We've been married a year and two weeks. Twenty-six weeks have passed since we woke to life after stroke. Yesterday, he finally admitted to me that he's tired of the battle. 

We've weathered six months, two weeks of which he was nearly comatose, a nasty bought of pneumonia, two blood clots from deep vein thrombosis, depression and anxiety, and last weekend, a first grand mal seizure.

I'm tired too.

Fall brings shifts of light and temperature. My complaints about the low quality of care and lack of appropriate healing environment at the nursing home have found us in a new room several doors down from the noise of the nurses' station and the constant din of the adjacent resident's television in the old room. A radical turnover in administration at the nursing home dominated the last month of our lives. I'm still uncertain what spurred the resignation of the old administrator and head nurse, but the staff dynamic here at the nursing home has always been tense, and in the time since the resignations not much has changed. The new room is large, quiet, has a bed for each of us, and provides a lovely view of the mountains we used to hike together. But my husband still feels oddly out of place. Cared for because he provides a job for the able bodied, but not at home.

There are those aides and nurses for whom I'm deeply grateful. But I'm done with providing patience for those who do not care for my husband well.

I've spent hours on the phone and in various offices trying to get Mr. PNU cleared to come home. We're waiting for the city housing agency to make necessary ADA accommodations to our apartment, and for Medicaid to clear my husband for home care. In the meantime, I take him out of the nursing facility for hours at a time each day, provide him academic stimulation among colleagues guest-lecturing on campus at the Pie Tin, take him to therapy three times a week at Neuroworx, facilitate his participation in conferences, and help him to worship at temples. I shower him two days a week, and attempt to remedy the haphazard grooming of nursing home aides the other five. Even though our budget is laughable, I purchase him protein bars and shakes after therapy to keep his protein intake at levels Neuroworx has requested, and share hearty soups with him at the Pie Tin's library lunch counter after lectures in Religious Philosophy. We read and discuss class readings and passages from the Book of Mormon before we pray together each night.

Granted, there are hours that I spend away from my husband each day, resting, caring for my home and children, taking my own class. I'm not certain how full-time caregiving will look yet, and sometimes I wonder if I'm up to the task. But I'm weary of the stress of juggling life between the nursing home, my home, campus, and Neuroworx, and the constant frustration of having to do over the work of aides who seem more concerned in doing their jobs quickly than well. 

Mr. PNU tells me frequently that he's tired of life in the nursing home, and I remind him that coming home will not change anything as far as what he's able to do each day. That part of the responsibility is his. And that is where his weariness from the work of recovery comes into focus. 

Last night I read through a study of stroke recovery outcomes. It was the best I've encountered so far, as it takes into consideration the possibility of recovery gains beyond three, six, and even twelve months with appropriate rehabilitative resources. But it still clearly defines our present level of recovery as severe disability, and points out that after six months since the stroke there are certain elements of recovery hopes that we need to release. The left neglect is more than likely permanent. The lack of left-side proprioception (or the awareness of the body in space) is likely permanent. The use of his upper extremities is more than likely unrecoverable. We are not done fighting for more mobility, but even after hours and hours of therapy, and pushing through the odds to recover trunk strength and movement in his left leg, Mr. PNU is almost completely reliant on others to help him with activities of daily living. 

He's begun to refer to recovery as a years-long process, which means his insight into his disability is growing more clear. Ironically, this too is part of his recovery, and in a sad kind of way I'm glad to see him give up the belief that a fix is right around the corner, although it means that the very real prospect of years-long work sometimes overwhelms him. He hates it. He misses feeling like himself. He misses being able to wrap his left arm around me. He misses feeling like something more than a person to be pitied. He misses the mass of that right cortex and the nuance that it added to his life. 

In exchange, he's learning to be braver and to work harder than he ever thought he'd be required. I deeply wish this had not happened to him. But I'm proud of him. I love him. And it's okay with me that he has hard days, that he gets tired and expresses his weariness, and that, in order to provide him with quality of life for the duration of whatever remains of our trial, I chose in turn to sacrifice some of my own.

Saturday, September 26, 2015

Wandering the heritage of masons

This place is comforting again—
with all its granite reminders of impermanence,
all its arms of flesh pointing toward trustworthy destination.
I love these monuments to the promised outcome
of my every capricious breath.

I believe Heraclitus got it right.
There is only becoming and conflagration.
My body today is a resurrected being in relation 
to my body seven years past.
In another seven years I will possess the body of another stranger.
I will never be the same.
There are only eternal goodbyes,
eternal hellos.

And so, for what it's worth, I spent the afternoon in confrontation
with the universal gift of accretion and entropy.









Wandeing the heritage of masons

This place is comforting again—
with all its granite reminders of impermanence,
all its arms of flesh pointing toward trustworthy destination.
I love these monuments to the promised outcome
of my every capricious breath.

I believe Heraclitus got it right.
There is only becoming and conflagration.
My body today is a resurrected being in relation 
to my body seven years past.
In another seven years I will possess the body of another stranger.
I will never be the same.
There are only eternal goodbyes,
eternal hellos.

And so, for what it's worth, I spent the afternoon in confrontation
with the universal gift of accretion and entropy.









Tuesday, September 22, 2015

1:41 before I kissed him goodnight


I wilt a little more inside every night I have to leave him,
and maybe that means the despondence is trading hands.

I cried all day Sunday in bed 
because of my lonely helplessness over the entire situation.
I'm not going to lie anymore; the nursing home is awful,
and there are no clear routes to bringing him home. 
My prayers for help bounce off the ceiling,
and I'm left fearing something awful is going happen;
that I'm going to lose him.
I don't mean to become hopeless or morose,
 but I'm lacking any clarity of foresight.
I'm feeling desperate.
Our anniversary is in twelve days.
I don't want to do life without him anymore.

Saturday, September 19, 2015

It must be a combination of things
a domino effect. 
One trigger, 
added to another, 
added to another, 
equals: 
I am feeling a mess.

Tonight, I need the husband I had before he had a stroke. 
And that's not going to happen.

Some things don't fix.

Friday, September 11, 2015

Empathy on recovery road


Mr. PNU's eval three weeks ago with Matt Hansen at Neuroworx

While Mr. PNU slaved through the rigors of Matt Hansen's prescribed therapy, I sat for a few minutes yesterday with, Dale Hull, the white-haired, shockingly blue-eyed executive director of Neuroworx

Dale, himself, is fifteen years post spinal chord injury, walking with two canes, continuing his life in medicine as he'd intended prior to paralysis, although down a different path of patient care.

I gave him the basic details of our story. I told him about growing up with a parent with traumatic brain injury, and my experience with the emotional and physical changes neurologic incidents can induce. I recounted waiting for Mr. PNU's prognosis, telling myself I could handle anything as long as the stroke didn't cause him to become violent. I told him about being married only six months before Mr. PNU's stroke, and how after what I'd been through with previous spouses, being the wife of a stroke survivor, one month from my first anniversary was the happiest I've ever been. I shared the frustration at seeing my husband's substandard level of care when I'm not doing the work myself in the nursing home.

Dale listened and then discussed the need for a redefinition of time, and for patience in the recovery process. His own recovery spanned three and a half years. We talked about the trade-off of ability for the personal growth and insight Mr. PNU is gaining, and Dale confided that if possible, he would reverse his spinal chord injury, but not at the expense of losing everything he's learned in the past fifteen years. 

I admitted to him the sad shape of financial prospects for our future, and our desperation to find a way to bring my husband home. He agreed that sadly, with Medicaid restrictions on income and saved assets, the circumstance of being trapped in poverty is predictably common with severe neurologic trauma. He also expressed deep frustration that the government is willing to spend thousands of Medicaid dollars each month for nursing home care, but unwilling to help provide accessible housing for family members willing to care for disabled loved ones at home at a fraction of that cost.

Dale passed along the names of a few authors whose work addresses neuro-plasticity and recovery from neurological trauma, including Norman Doidge. He directed me to apply for a financial aid scholarship for continued therapy from Neuroworx, based off of Matt's evaluation of Mr. PNU's potential gains and our income. And then he told me something that took me off guard, something I've thought to myself privately—felt deeply—but that I'd never heard from anyone since the stroke. He said I needed to know that besides my husband, no one will ever understand the scope of what we're going through. And that even fifteen years out, he still has bad spinal chord injury days where the loss weighs heavy, regardless of how far he's come or the difference he's making in the lives of paralysis victims like my husband.

I looked at him squarely and said, "And Dale, that's okay."

His blue eyes glistened in the light, and he nodded. "Yes. It is."

Wednesday, September 9, 2015

Caught in transit

I often wonder.

Did we get where we were going?
 Was there even a destination in mind?
Or was it always the effect of a shifting frame,
the constancy of the shutter,
and the sticky residue from all those fixed points in time?
Is that what gave us the sense that we were on the move?

I never regret the decision to take a photograph.
Everything in between proves a blur.