Saturday, February 27, 2016

Collecting the missing pieces (part II)


I have two and a half hours left before I have to be back at Mr. PNU’s side as caregiver. Temperatures are warming, and the thawing world has me distracted. I had the afternoon planned before I left home, and now those plans feel too restrictive. I want so badly to just be out, enjoying the day. I want to be unburdened by the stress of overseeing the future that continues to tug at my eyelid.

As part of the necessary act of remembering, I want to tell you about my husband on the last day before his stroke. 

We lay side-by-side in bed last night listening to a recording of his last lecture on Buddhist ethics, made and sent to us by the mother of one of his students. This good lady came to assist her disabled daughter record classes, and after what would be his final lecture  she chatted with my husband while the device continued recording. The anniversary of my husband’s stroke and this encounter is seven weeks away. While we listened to his beautiful pre-stroke voice, it occurred to me that in my management of holding the world together, in the uncanny presence of mind that took over my every action for weeks to follow, I didn’t even think to say goodbye. The ghostly sound of my husband’s lilting voice and the ease of his conversation filled our room, and I ached for the lost parts of him—grey matter and glial cells that have dissolved into the dark resonance that is revealed by MRIs and CT scans.

I love Mr. PNU, the stroke survivor. I love what he is becoming. Some days, I even love the adventure of discovery that stroke has posed for us. But the man I am married to now is a very different person from the man in the recording. So let me tell you about this professor who was so crazy in love with me, so flipped out in his head-over-heels newlywed bliss, that as he shared the story of how we met with this student and her mother after his last lecture that you can hear the giddy smile on his face as he speaks.

“What’s your goal with your career?” the student’s mother asks. “You going to be a full-blown professor, or you haven’t made up your mind yet?”

“That’s what I’d like to do, but I’ve failed at doing that repeatedly,” he says.

“Well, take the Buddhist approach. You just keep going. Eventually you’ll have another karmic opportunity.”

“Eventually I’d like to get a full-time position,” he tells her. “Mostly, not even because of prestige or anything, but I’d get benefits like healthcare.”

“But you do enjoy teaching?”

“I love teaching,” he says with joy.

“It seems to me that’s what you like doing.”

“I love coming to this job. There’s nothing I’d rather be doing, and if I’m poor doing it, fine, I don’t even care. I’m surviving, I mean. I’m alive.”

“Now your wife was coming to this class for a while. Is she teaching as well?” she asks.

“No, she’s actually an undergraduate. I met her because she took this class,” he says somewhat sheepishly. 

“Wow! Really? Cool. Very cool.”

There is much giggling from both student and mother.

“So, yeah, so that happened. We didn’t, like—nothing inappropriate happened.”

“Oh come now, I think it did,” she teases him.

“No, I’m serious,” he says, because if there was anything Mr. PNU worried about during our courtship and after it was that people would assume he’d been unethical in pursuing our relationship.

“No, I believe you,” she reassures him. “I totally believe you. People always want to go there.”

“No, serious. Really,” he explains. “She took my class and she was a very good student, so the next year I asked her to be my TA. And then, at the end of that—we didn’t see each other romantically at all during all of that—and at the end of that she gave me her phone number and said call me, and I did.”

“Well, good for you. How long have you been married?”

“About six months.

“Oh my goodness. That’s awesome."

“Yes, we’d dated for about six months before we got married. So she’s actually TAed for this class.”

“So you’re newlywed?”

“Yeah, pretty much. Second marriage, but I can tell you already, it’s going much better.”

And for me, I sheepishly admit, a fourth marriage. In the grand karmic scheme, I suppose I just kept going. By the time that stroke anniversary rolls around in April, my marriage to Mr. PNU will have lasted longer than either my second or third. But I can tell you, even in light of our traumatic first year, our losses and heartaches, the bizarre and miraculous hellos and the bittersweet goodbyes, he’s still right. Strange as it may seem, as my experience with marriage goes, this one is much better than anything before it. Which is probably why, in grief and love for my philosopher boy, I keep going now.

Saturday, February 20, 2016

Caregiver Survival Tip #1: Kill the Contest


I noticed the oddity in the phenomenon before I realized its destructive nature. And while I wouldn't say the majority of caregivers I've met behave in this way, it only takes one or two jabs from a single source to send repercussive poisonous ripples into the sea of surrounding caregivers. The remarks are offhanded and subtly dismissive. 

When I explain that I'm showering my husband every other day:

Oh really? I shower [survivor's name] every day. And if he decides he doesn't like the first outfit I dress him in I change him into whatever he wants. But isn't that what we should do for them? You know, since they've lost so much. Give them control that they can have.

When I explain I'm nearing caregiver burnout when I bow out of conversation:

You mean, just exhausted like the rest of us?

When I try to relate my experiences with the caregiver of a spinal cord injury patient:

You wouldn't know what it's like. You're only dealing with stroke.

When I explain that I need quiet time while Mr. PNU is in therapy instead of socializing:

You were only up twice in the night? I'm up every two hours turning my quad every night.

In general conversation about caregiving:

I don't know how [insert name of absent caregiver] can complain about being tired. I mean, she has help come in a couple of times a week.

After Mr. PNU came home, I'd only engaged in a couple of these exchanges before I started self-evaluating and weighing that criticism against the job I was doing. How good was I at caregiving if I received in-home help? Was I tough enough if I wasn't having to do the kind of work that the caregiver of a quad must maintain? Were my struggles even valid if I am only dealing with stroke? Basically, I began beating myself up. I wondered. Why was caregiving so hard for me if I receive nine hours of respite help a week? If my husband had half the use of his body? If Medicaid pays for shower aides to help out three of the days I'm not showering my husband on my own? And it really shouldn't be that difficult, because one or two other caregivers regularly tell me how easy I've got it, right? So why was I falling apart so quickly?

I began taking stock of the caregiver community climate a few weeks ago. Most people I've encountered at therapy are totally supportive, regardless of the differences in our particular jobs. It isn't a predominantly competitive environment, but there exists a small handful of caregivers who seem delighted whenever they are given the chance to set themselves up as hardworking and kicking it better than everyone else. 

And I fell for the bullshit.

There's a line I tell my kids over and over, a broken-record recitation—a "momtra".

IT'S NOT A CONTEST 

I was raised by an excessively competitive woman. That fact has had long-reaching negative consequences, so this is a lesson I reteach myself as often as I try to drive it home with my crew. It doesn't matter what you know, or what you do—there will always be someone who knows more, or who does what you do with more skill, more experience, more accolade. And you know what I think about that? So what? There will always be someone on some particular day, no matter how well you've packaged yourself, who will win at the beauty charade, who will beat you to the right answer, who is willing to laugh at your expense in order to feel more worthy. But to what end?

The only role in life worth competing for is the title for kindness. Not feigned hospitality or contrived niceties—true charity. A soft tone. A listening, compassionate ear. A supportive response. Patient encouragement. Withheld reproof. Tender humility and forgiveness. A willing smile. A genuine outpouring of helping desire. Accomplishments and accolades are lovely, but for what if they are won at the expense of our intimates relationship with our fellow humankind?

I think my family hears the wisdom in the words, even though I find reason to continue repeating myself. And so, as I began to unravel a couple of weeks ago, I had to re-evaluate what I'd let become a contest. 

Am I tough enough? Yes. But my husband doesn't need tough. He needs a kind, supportive, happy, loving wife. That's what matters most to him. 

Is there any such thing as just stroke? Spinal cord injury leaves personality and mental capacity intact. While the injury is certain to cause depression, the person—though differently abled and greatly changed physically— really is the same person. It's so funny how we can look at other awful situations and feel jealousy for what ability remains and think we'd exchange our lot for another's. Some days, when I've pushed a 230 lb. man in a manual wheelchair for hours on end, I'd give anything to trade for quad paralysis since so many of the C4s and C5s I meet can operate their own motorized chairs. I don't think my husband would agree. There's no such thing as JUST anything. All hardship is valid. All hardship is hard. Humans struggle when life is hard. It's normal.

If I accept help, does that automatically preclude me from taking pride in the care I give my husband? At the end of this road, if I've cared for my husband with help and maintained the quality and closeness of our marriage, why would any healthy person question the job I've done? Managing survivor/caregiver conflict is a very real issue in the realm of longterm disability. I see the relationships of those around me shred by inescapable co-dependency, obliterating any true intimacy that existed prior to injury. I see caregivers staying with their survivors out of obligation as parents, spouses, and other family rather than willing service. I see the resentment the caregivers sometimes wear, and the returned resentment from survivors unable to escape their complete dependence on the relationship to survive. I hope in choosing to ask for help, and for accepting more and more of it, I can preserve the genuine love I have for my husband, and protect his ability to share his genuine love for me in the exchange. A happy marriage—being a happy wife—is by far the better alternative to winning some imaginary title of "World's-Hardest-Working-Toughest-Badass-Caregiver." Because as soon as comparisons start creeping in, even if I'm comparing myself to other caregivers and not my husband, the balance in this tightrope act is thrown. 

We're struggling enough with balance as it is. So I let go. My imaginary opponent crumples to the ground, tied up in her own rope. I'm still standing, and as I walk away I remind myself again: It's not a contest. It never was.

Monday, February 15, 2016

What a caregiver needs

While my husband was at therapy I spent an hour chatting with a 55-year-old woman who's been caring full time for her husband with MS for twenty years. Though I've only been at this ten months, our experiences are so similar I think I need to start writing about the caregiver phenomenon in greater detail. 


And I'll be meeting with my bishop on Wednesday to outline our needs and to formulate a plan for the elders quorum to assist me with Mr. PNU, because—wow. This is a very difficult job, and no, I'm not getting the help I need. Utah Medicaid is probably the lousiest Medicaid program in the nation. I went from 27 hours of in-home help on November 1, 2015, cut to 9 hours of respite/housekeeping help since January 1, 2015. 

The list of symptoms contained in the above link is hauntingly accurate for how I sometimes feel. Not all the time, but often enough that I definitely need added help soon. The problem that a lot of caregivers run into is finding people who are willing to help in the ways needed, rather than through means that those on the outside perceive as helpful. 


The woman I spoke to this afternoon asked me if I'd seen this video, which started making internet rounds about nine months ago. She asked my opinion. My answer was something like this:

"I think it's incredible that a ward would do the work necessary to keep a woman out of a nursing home or assisted living. It was well produced, as most Church videos are, but certainly doesn't detail the features of the job that are both necessary, likely to be unpleasant, and alarmingly intimate for neighbors to undertake." 

She nodded, "No, it certainly doesn't. And I think it's great a ward would help like that, but mine won't. I don't think they can."

What most people don't understand is that most function that they take for granted—activities of daily living—must be done for the people caregivers attend to. The only differences in this woman's job from mine: my husband can feed himself, her husband can operate a motorized wheelchair. Our spouses are one hundred percent dependent on us for everything from getting out of bed in the morning, peeing at night, clipping toenails and fingernails, assistance urinating and defecating during the day, shaving, showering, dressing, having meals prepared, getting in and out of vehicles, traveling anywhere, retrieving any wanted item, prepping for bed, taking medications, and any other activity or aspect of life that doesn't entail sitting in bed or in a wheelchair. We are living for two, all the while attempting to maintain autonomy and boundaries with our spouses in ways that most normal, healthy couples never have to grapple.

Next she asked me, "Do you read the articles in the Ensign about trial and adversity?"

This time my answer went like this:

"No, I don't. I learned a long time ago that almost none of what's in the Ensign looks like real life. It's not helpful to me. It may be to someone else, but it usually leaves me feeling even more hopeless and guilty for the complete human scope of emotion I go through in a day."

"No, it's not real life," she agreed. "I don't read them either, and I'm glad you don't. When caregiving became too much for me and I started going to therapy I found a number of counselors who encouraged me to steer clear of the Ensign for exactly that reason."

But she did reassure me that, even though I will wonder to myself a billion times over if I'll be able to keep going through the course of my caregiving, those questions are normal for those who take on this task. She reassured me that no matter what help people are able to give, I need to find a way to accept what they can do and make it work for me in order to keep going. And she promised to see me next week, and that no matter how hard it gets for both of us, she's always available to compare notes or to give advice. Today, besides sleep I never seem to get, that was what I needed most.

Sunday, February 14, 2016

Valentines for the birds


I think most parents assume that someday something will magically bring their children back home to visit once the flock flies the nest. Evidently, food is the trick for my grown birds.

I'm known for being a low-key sabbath fare sort of mom. When B— was born in 2005 and I was suddenly caring for four little people on my own, I devised a quick, please-all after-church meal that became a tradition for the next ten years. Our dinners featured tunafish sandwiches, or PB&J, or Turkey-bacon BLTs. I regularly served these with baby carrots and fresh grapes, and while our table might never be mistaken for resplendent, my kids grew accustomed to lively banter and familial silliness as we shared our repast.

These days, the crockpot frequently features on the Sunday menu. Last week I served onion-soup chicken, roasted potatoes, baked carrots, and rolls made from Rhodes dough. Prep time: 20 minutes. Today I served teriyaki chicken in glaze over white rice and Asian stir-fried veggies, plus delicious red velvet Valentines cupcakes I ordered from Mr. PNU's cousin. Prep time: 25 minutes.

They begin flying back to roost at 6 o'clock. The table is set, the family gathered round, and the meal heartily consumed. Then, as I stack dishes and wipe the table clean, my oldest son and oldest daughter dismantle the ornaments from the Christmas tree partridge and all, my youngest daughter serenades us on guitar, and my ten-year-old flits from one sibling to the next like a hummingbird to fading summer flowers. Boisterous laughter. Rollicking jokes. Adjacent heads on adjacent shoulders, and the light outside fades to foggy shadow. The beds at other addresses call, and they fly away, again and again. I learn to praise the fleeting togetherness hours within my home, the shells of simplicity, of food and love, and the affectionate fare that continues to feather my nest on Sunday afternoons.

Saturday, February 13, 2016

I'm a decaf-drinking temple-attending Mormon...which means "Judge not" doesn't seem to apply

ἀπὸ παντὸς εἴδους πονηροῦ ἀπέχεσθε

You know those orthodox folk who subscribe to "avoiding the appearance of evil"? Translation discrepancies are a beautiful thing, not just in the New Testament. For instance, I'm still working through Plato's Parmenides, but the elegance of Reginald Allen's translation blows the socks off of the Benjamin Jowett I've primarily worked with until this last week. And yes, to counter what I'm about to say about the misinterpretation of 1 Thessalonians 5:22, I prefer the graceful style of Allen rather than the fairly straightforward rendition of Jowett. 

"from every form of evil abstain"

Or, without mincing Pauline words, "Don't sin."

And all I have to say: "Well, yeah. That sounds about accurate."

I admit openly, freely, often that I read a lot, and often things that most people don't, and perhaps some feel I shouldn't. I remember one Sunday School a few years ago when I brought up Bushman's Rough Stone Rolling. That comment immediately won me a couple of unexpected new friends, and the critical glances of a few others. (Our shower aide picked up one of our two copies this last week in curiosity. If she's Mormon, she's not active. Mr. PNU and I talked about her interest, and I think we both think she'd benefit from reading the fair and faithful portrayal in Bushman's biography. We'll probably lend her my paperback.)

More recently, I've referred to the 2010 Church Handbook if necessary. (Because I drink decaf, because once a child is born into the covenant no "re-sealing" is necessary even if his/her parents divorce or if their sealing is cancelled, because I needed to know if we'd have to wait a year to have B— sealed to us once his adoption is complete, because I was curious about sperm donation.) The Handbook is such a hot topic lately, I'm wondering why more people haven't read the wikileak copy sooner. It's been available for years.

And I read internet published accounts of other religious practices, both LDS and otherwise, that some might find controversial. 

Ten years ago, when I first got into investigating written material of this sort some of the stuff I found threw me into a faith-crisis maelstrom—polygamous marriage records, switch-er-oo Church policies, doubtable sources of scripture, contradictory scripture, etc. I remember swimming in cognitive dissonance, confronting others in my congregation or family with the information, and begin scolded for reading anti-Mormon tract, when I knew the sources were legitimate. 

"We have to reconcile ourselves with these facts and their implications!" I'd exclaim. 

And most often these cries were met with, "The Church is true." And other dogmatic exhalations that demonstrated a kind of resistance to any challenge of previously held perspectives of the LDS faith. 

I understand this reaction. It was confusing enough for me that I had to start building faith from the ground up, and along the way I gained insights I wouldn't have had otherwise. But expanding my perspective was frightening, because it meant uncertainty during a period of authentic growth, and authentic growth is never comfortable. These perspectives allow me to tread the borderlands, knowing I'm faithful, hanging with the doubters or unbelievers without needing to criticize and with greater compassion for their struggle to adjust to their own ever-shifting world views and experiences. In the end, I feel what I read, learned, confronted and assimilated made me stronger to subsequent waves of doubt and instances of "damning contrary evidence" or "uncovered proof to discredit LDS truth claims."

I'm not always on the same page as other faithful members who haven't wrangled these points, but I'm working on enlarging my patience and charity across the board. If my new groundwork is solid it should help support close association with others of my faith the way it does my association and friendships with non-believers.

So I do. I hang out in coffeeshops and cafes. I drink hazelnut decaf, because I like how it tastes, that it offers an alternative to high fat and calorie hot chocolates, and 

Friday, February 12, 2016

Results

Three things have occurred in the three weeks since I quit Facebook.

1) I've found the time to read books. This week I'm working on David Foster Wallace's Consider the Lobster, and Reginald E. Allen's translation and commentary of Plato's dialogue Parmenides.

2) I write more. Lines and line of as-yet disembodied poetry that I send to myself in text, or that I jot down in the journal from Metropolitan Museum of Art that my sister-in-law gave me for Christmas in 2014. Snips of prose in various documents on my desktop. Transcriptions of my husband's journal notes for blogging and academic papers. This blog.

3) I'm no longer so emotionally lonely or wishing for the emotional support that Facebook somehow seemed to promise but never delivered. One of the most interesting studies on the Facebook loneliness phenomenon came straight out of the Pie Tin. You can find it here. Yes, I still feel under-supported. This is an unforgiving job and an isolating life, and very few people help who aren't somehow compensated by the state for their effort. But I'm no longer sharing carefully selected tidbits from the intimate details of our lives hoping that we'll get more than a "like" or comments that are actually compassionate and affirmative from people who really have no idea what our day-to-day is about.

This morning, when I cracked open my poetry journal to write down the line that's been rattling in my brain since 5:30 a.m.—"I am your three-cornered hat"—the first page fell open. I think this brief entry perfectly explains what life has been like since Mr. PNU's stroke, and apparently I'd figured out some two months before that life in general is exactly this way for all of us.




Wednesday, February 10, 2016

Collecting the missing pieces (part I)

We hadn’t dated but a few months when Mr. PNU approached his bishop one Sunday to request a personal blessing for guidance in our relationship. They met after meetings, in Sugarhouse where my husband was attending at the time. I know, because I went with him. 

I recall two things about this blessing. One, we were on the right path and we were doing well in pursuing the relationship seriously. Two, our coming together was no accident and Mr. PNU was advised to write down the particulars of our story. The second point stood out to me, because unlike my past relationships, when I sat down to write my own details about dating Mr. PNU I always found myself hesitant. Any descriptive formulation of that unfolding felt muddy and disrespectful, lacking sanctity. I wrote almost nothing during those months.

Anything I write now will of course bear the clouded nature of time passed and its absent clarity. But because I am losing my memories of my husband before his stroke, I feel an urgency to encapsulate these scenes in the solidity of language. And so I shall.

I gave Mr. PNU my phone number early in May of 2014 at the conclusion of an Ethics and Values professor/TA pizza party that he arranged at Two Jack’s Pizza on Center Street in Provo. I knew it was my last and only chance to express clear interest in continuing our relationship on a more personal level. I took B— with me to the party as much as social buffer as a likely excuse to duck out if the party climate seemed to go sour. It didn’t, but I was nervous enough that I used my son as a crutch. Mr. PNU sat wedged in the corner of our booth. He greeted my son warmly and I opened to a clean sheet in my notebook and pulled out colored pencils to keep B— happy until the pizza arrived.

Mr. PNU immediately began engaging B—. I already knew he was good with M—, my oldest daughter, his cheerful interaction with my son did not differ. He was wearing his red t-shirt and his forest green zip-up that he’s labeled his Kurt Cobain sweater. His hair was getting long enough that it hung in his eyes, and he frequently tucked it behind his ears and held it in place with his reading glasses. His jaw and chin sported the ever-present five-day beard. This was a classic Mr. PNU look—middle-aged grunge rocker secure in his philosophic aims; adorably sexy-nerdy. 

I myself wasn’t particularly chatty. I get that way when I’m around people who either intimidate me, or for whom I’m hopelessly smitten. With Mr. PNU, it was a little bit of the former and a healthy dose of surrender to the latter. He split a sausage, olive, and mushroom with me and B—. The very fact that he was into mushrooms was pheromone to me. Banter stayed light. The other two TAs were graduating, and they filled us in on plans for relocation and law school. Dave and his wife brought their infant son and Dave’s parents (which was kind of weird and kind of totally fine, since the whole party was awkward for me what with my intentions). Courtney came alone. After an hour or so everyone had eaten. We agreed it had been a good semester, the TA experience positive, and the party began to wind up. I took a spare sheet of paper from the notebook as B— drew, scribbled my name and phone number on one corner, tore it off and pushed it across the table to Mr. PNU.

“There’s my number. Give me a call this summer if you’d like to hang out.” I was going for my best nonchalant tone. My this-doesn’t-matter-to-me-one-way-or-another tone. I suspect though, for my nervousness, that my voice must have sounded pinched in my throat. Mr. PNU took the piece of paper with his best this-is-a-really-sweet-gesture-and-maybe-I-will-when-I-get-around-to-it cool cat smile. We all walked out together. Courtney took off to the left. My car was parked right in front. Mr. PNU was parked to the right down the block. He hung back for a moment, trying at a little more small talk before it all sort of dissolved into ambiguousness for any future beyond that goodbye. I got into my car with my son and drove away relieved and elated and sad and uncertain—really par for the course that entire semester. At least my interest was completely on the table and my phone number in Mr. PNU’s pocket.

What was the standard wait time? I thought I knew: three days.

On day four with no phone call I started to worry. I asked one of the guy trainers at the gym what he thought. Five days, he said. Five tops.

May 12th, day five came and still no call. I couldn’t believe I’d given this professor, my boss, my number and he’d just blown me off. I’d thought we were at least friends. He’d admitted to me how lonely he was when his daughter wasn’t around. Seriously. How could I have so completely misread that he wasn’t at least interested in continued friendship?

I was feeling really dumb, or perhaps in need of a good dose of bitter reality to curb my desperation. So I emailed him:

To: jmolsen1966 05/12/14 at 8:41 AM

“I've heard that persistence is either annoying or endearing. I'm aiming at the latter, but you'll need to tell me if my technique needs improving. SLC Library is hosting this screening of documentary shorts on Thursday. It will give me an excuse for a long ride on the train with a good book, and hopefully a chance to see you once I reach the city. Care to join me?”

He emailed me in return 22 minutes later with more gushing enthusiasm and overt availability than I anticipated.

To: msballetstudio 05/12/14 at 8:53 AM

“I would love to join you. I was planning on calling you today (I really was). I have C— Thursday night, though, and I usually have to have her home by 7:30, which is right in the middle of this. My choices (for this particular activity) then are 1) take C— home early (which I don't like, because I want to spend all the time with my daughter I can. 2) try to get her mom to let her stay out later and bring her with us (not a good idea either) or not do this. Could we do something else this week? I am very flexible with my schedule right now (I am just hunting for summer work and trying to get some reading and writing done etc., so other than seeing C— T/Th after school I don't have much else scheduled (oh--I volunteer at Valley Mental Health on Friday morning, but that should affect these kinds of plans, and I have a dentist appointment tomorrow morning. Other than that I am totally free). You want to catch a movie at the Broadway Friday night or even Thursday night after 8 (or Wednesday or whatever)?”

Except rather than wait for me to respond, he called me three minutes after he’d clicked “send”. I remember that phone call as frenetic and breathlessly upbeat and positive, if not giddily awkward. A whirlwind of conciliatory explanation for why he hadn’t called sooner, a no holds barred joviality, and ad item proactivity that I’d always somehow secretly known was possible. By 9 a.m. Monday morning, we had our first date planned—a showing of the Tom Hiddleston/Tilda Swinton vampire flick “Only Lovers Left Alive” at Broadway Cinema in Salt Lake City Friday, May 16th. I floated through the next four days. My photo dates tell me that in those interim days I took my daughter L— to dinner at Olive Garden and my son E— to the documentary shorts at Salt Lake City Library. I know I mused over what to wear. Except for that I remember feeling calm, weightless, and centered. All else leading up to that Friday is forgotten.


Tuesday, February 9, 2016

Things we all should know about stroke


We're less than ten weeks from our one year mark. Every day is filled with heartache, hard work, joy, and lived patience. Each day, even as he grows stronger and continues improving, Mr. PNU and I are becoming aware of our eventual outcome and the need for surrender. A life of severe disability and caregiving is nothing either of us anticipated. Every day on the battlefront we're learning something new about our capacity for strength. Research accounts for everything else I'm learning. Cats aside, curiosity kills the bliss of ignorance. Because ignorance can kill you, you really ought to know this information too.

A number of people have asked me what happened to the clot that lodged itself in my husband's right carotid artery in April. Is it still there? What about the return of blood flow to the affected areas of the brain? Re-oxygenation can do wonders, right? I mean, the brain is supposed to be able to fix itself, right?

I didn't know anything about stroke besides the symptoms before it happened to Mr. PNU, so I can't blame anyone else for not knowing. Now that we're in this mess, it's become my responsibility to find out and disseminate what I know.

So here's the scoop. 

This link offers a breakdown of the heavy duty jargon on death of brain tissue.



The easy answers are: Yes, the clot is now dissolved by the many doses of Warfarin, or blood-thinner, Mr. PNU began taking in July after his first detected DVT, or deep vein thrombosis in his affected leg. While oxygenated blood is important to all undamaged brain cells, an enormous portion of my husband's right hemisphere wasn't merely de-oxygenated. It died. And once brain tissue dies it liquifies and a crater forms where the healthy tissue once resided. Oxygenated blood does nothing for dead tissue. It's gone. Forever.

And my husband's brain, once smooth and cheerily dimpled, is now pockmarked and lunar. I found images of stroke survivors' brains. Pictures are a good dose of reality. I don't recommend viewing to the squeamish: here

Considering that stroke is the fifth leading cause of death in the United States, a major player in sudden disability, here's what you should know about your likely risk factors and resources for those affected by stroke. 


And because I've been asked about those twenty or so minutes before I called 9-1-1, do not accept hubris in a victim when you spot the signs. Don't throw up your hands if they won't listen to you. Don't walk away to take a shower. Don't let them try to figure it out on their own. Just call. If you're wrong, you're wrong. If you're right you may save brain tissue, function, ability, and possibly a life.

Saturday, February 6, 2016

Grief, Act I

I.

Yesterday, at 10:04 a.m., 30 minutes and nine seconds into a steep uphill march on a treadmill at VASA Fitness, I read the final sentence of Paul Harding's Tinkers. At 30 minutes, fifty-six seconds into the march, Philip Glass' Itaipu trumpeted through my earbuds. My heart rate remained a steady 150 beats per minute. I held fast to the rails of the machine, reduced the incline, hung my head, and continued dragging my body forward through what my therapist calls "ambiguous loss."

This morning I woke at 3:47 a.m. from another seizure dream where my husband's eyes bulge at me like a fish, and he flops uncontrollably in my hands in some strange place where a fit is neither convenient nor safe. In the last two dreams of this sort one of us has been naked.

Loss is hard to wear. Too often the onlooker in my dreams will say: Do not give up faith! As if I have cast off some protective coat in a snowstorm, or a lifejacket just before spring runoff swells the boundary of the frozen riverbank. What I think the onlookers mean is: See! You are naked! Come. Slip back into denial with us, where we are warm and the floodwaters not yet high. But when I look down at my hand it is too late, The peach flesh has already been torn from the clingstone, and even if I were to spit out the juice, my mouth is filled with the taste of ebbing summers and I am drowning in dying light.

I sit up in bed and feel the flex of corded muscles braiding my back. They expand outward from their central origin, ripple and unfurl from a location I cannot see, living and breathing like animals between my shoulder blades. These animals threaten to continue plaiting themselves in plies of strength until a wholly new and unfamiliar creature peels open my spine, sprouts heavenward like wings or a beanstalk, and overtakes my identity.

My back: the first rung on Jacob's Ladder. Me: a reluctant angel. My husband: the clingstone peach, or at least the pit and a few remnants of the flesh that I struggle to recall as part of the whole, sweet fruit.

Thursday, February 4, 2016

Left neglected: an experiment in piracy





We happened onto this idea last night.

It's called monocular eye patching. I got curious about its use in supporting recovery of hemispatial neglect in stroke survivors while Mr. PNU and I were cuddling in bed last night and I experimented with his visual field by placing a hand over each eye interchangeably.

When they were small, both my oldest son, E—, and my youngest daughter, L—, went through periods of eye patching as treatment for amblyopia, or lazy eye. The idea behind the method is that in covering the more active eye, the brain is forced to improve use and function of the affected eye.

The post-stroke hemispatial visual field is equal to the vision experienced when a person covers his or her left eye. While the vision capabilities in both eyes remains 20/20, the damaged portion of the occipital lobe fails to register or pay attention to the left eye's peripheral range. For Mr. PNU, it is as though he were always walking around with a hand over his left eye. He doesn't see me when he rides next to me in the passenger seat of the car. He doesn't see the students who sit on the left side of the classroom. He doesn't see walls, rocks, ledges, or gaping holes on his left side. Thus, the left neglect he experiences leaves him vulnerable to environmental dangers and all the more dependent on others to help him negotiate the world.

There isn't nearly enough research on the use of eye patching in stroke recovery. But there is some, and enough of it positive that this afternoon I purchased a five-dollar eye patch and we've been making jokes about buying blousy shirts and a pet parrot ever since. He's walked up and down our hallway twice, and spent the last hour reading Daniel Dennet's The Intentional Stance without issue. It's likely too early to tell if the patching can trick the brain into rewiring neural pathways to compensate for the lost occipital visual registry and wake up my husband's left visual field, but I swear he's turning left corners with greater ease.

Wednesday, February 3, 2016

Dreams in the meantime


Yesterday I read back through old blog posts from last year, this, this, and this. We have come so far, but there's so much farther to go.

Today, after nine and a half months of tests, speculation, therapy, skilled nursing, and dozens of doctor visits, ten and a half weeks prior to our one year stroke anniversary, Mr. PNU's neurologist offered to refer him to a University of Utah stroke specialist. Doctors have pinpointed Hashimoto's disease and thyroid nodules, removed his inflamed gallbladder, diagnosed temporal lobe epilepsy, discovered testicular failure, treated him for severe sleep apnea, and prescribed blood thinners for his repeated deep vein thrombosis. But we still have no definitive cause for the clot that lodged itself in his right carotid artery and wiped out 2/3s of his right hemisphere.

Had I known the referral was an option, I would have asked for it months ago. We heartily accepted her offer. A specialist doesn't guarantee answers, but it offers us the chance to discuss why we're here and other existing possibilities that we don't yet know to ask about.

As we pulled away from the neurology clinic and headed up State Street toward Neuroworx, Mr. PNU turned to me with a sort of wonder and said, "You really love me."

"Was that ever in question?" I asked.

When I pray, I ask to see far enough into the future to make the next clear decision, to discover real avenues of exploration in guiding our course through the recovery of my husband's identity and our lives. Inevitably, that's what I'm given, and rarely more.

A few weeks ago Mr. PNU declared, "Christ is healing me. It's a slow process, but it's steady, and it is happening."

I'm not going to assume full recovery is possible. But I'm willing to allow myself continued surprise, to be wrong and delightedly so. If someone had told me last May that we'd attain what we have in nine months I would have responded skeptically. There was simplicity in accepting our prognosis. And contrary to the supposition of those who have questioned my faith in this process, I'm learning that faith isn't assurance of any sort of outcome, just as my husband has learned that patience isn't waiting. The challenge to keep going never eases, even when I wonder how long I'll be able to maintain determined effort to remain determined. Mr. PNU slips in between moments where he is comfortable moving forward like cooling tar, and periods of utter frustration and insecurity that his life will never be different than it is today.

Focusing on the sluggish forward momentum keeps my mind off harsh, unavoidable realities. I struggle to remember my husband pre-stroke. The more I try to recall his balanced stride, his even confidence, and his old, jovial nature I fear I am confusing my memories with fantasy. Sunday evening, unable to conjure images of him other than wheelchair bound, I found myself facing down the fact that the man I keep trying to recreate will never return. Denial won't bring him back. No amount of daydreaming will bring him bounding into our bedroom late on some spring afternoon to make love to me, or make him suddenly appear walking toward me in the hallway at the Pie Tin. The ache for those missing parts of him nearly tore me in half. I found myself angry, angrier than I've been since April. I turned that anger flippantly toward God, raging in my heart that He's reduced us in this way, holding nothing back in my murmuring. I sobbed for hours, screamed into my pillow until my swollen eyelids folded in on my eyes. As the heated edge of this pain burnt away I succumbed to sleep. I woke on Monday and acknowledged that all those absent miraculous sightings have been replaced by a strange and joyous surprise each morning I find Mr. PNU beside me when we wake.

We continue—faithful and patient.

You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream.