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.