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.