Wednesday, May 27, 2015

Every kid romantic thinks: When I grow up I want to be one half of the dreamy "love-is-all-you-need" poster couple


I'm trying not to be angry that it seems our society stacks the disabled poor deep and stows them in tight corners to die, but sometimes I can't help it. Especially when I can't sleep.

I caught the stroke. Why wouldn't it make sense that I'd catch the pneumonia too? 

Maybe because Mr. PNU's family and the fundraiser paid $14,000 for a month of care at a long term nursing facility. And because of that fact alone one might have imagined in the first week of his stay that price might guarantee him a shower at least once, or that if he hit the call light to have a brief changed he wouldn't lay in feces and urine for over an hour waiting for someone to respond, or that someone would put a stethoscope to his lungs before I could hear the crackling when he breathed, or that physical therapy staff would check up on the fact that he turned pale, became short of breath and nauseous after they worked with him, or that physical therapy would have some sort of concrete rehabilitation plan developed that was less arbitrary than asking Mr. PNU what he feels like working on from day to day.

The last week and a half on the second floor respiratory unit has been a dream in comparison to our first week on the first floor. The staff is prompt and attentive, kind and helpful. My husband has showered regularly. He never sits in a soiled brief. But dreams come at a price. $500 a day. And the idea is that since Mr. PNU's lungs have responded to the aggressive antibiotic and respiratory therapy he'll be transferred back downstairs.

Reality keeps me up at night. I've stopped dreaming.

Medicaid informed me today that disability determination has been postponed until July when Mr. PNU can undergo a neurology exam three months post-stroke. This seems ridiculous because of the profound nature of his hemiplegia, but I've been told this date is prompt for the government. For any outstanding unpaid balance the nursing home frequently goes after patient homes. The head of nursing said so today in front of my husband. As if he were a low return commodity. As if life is only precious on entrance to the world. Luckily, instead of a house my husband invested in a PhD in philosophy. But the hard, hard truth is, we haven't the necessary resources to provide my husband with any kind of sustained quality of life, and as slow as therapy is progressing my husband is living in a death trap where nobody cares unless you've got capital to prove you're worth saving.

After therapy, I pushed my husband outside in his wheelchair once around the block, hoping for fresh air, fresh perspective, for someone to offer the pinch to wake us both up from life. So here's my new perspective: 

If it weren't for  the constant concern and visits of friends and family, for the fact that I still lay in bed with the love of my life laughing and cuddling every night, and that I get the feeling everything will be okay when we pray together before I go home at the end of every day, this would be a nightmare. We are the poster couple for the belief that love is all you need.

I can't be angry at that. Dreams keep coming true.

Saturday, May 23, 2015

What we've lost

Occasionally I look at my husband and I tell him, "The hardest part of all of this is when I feel like I've lost my husband."

And inevitably he will say in return, "You haven't lost your husband."

At 9 a.m. I listened to a voicemail from Mr. PNU. "I can't cut my pancakes. Can you get here soon and help me?"

My eldest daughter, M—, graduated from high school last night. Festivities ran late. Because I never stop running between nursing home and the needs of my children, feeling well rested when I wake in the morning isn't an experience I can easily recall. This morning was no different. But I skipped a shower, slipped into clothing, washed my face and applied a fresh layer of deodorant to my pits, and drove the 1 1/2 miles to the nursing home by 9:30 a.m.

I encountered the second-floor kitchen aide as soon as I stepped from the elevator. He asked how I was, and I didn't hesitate to inform him. (I'm coming to accept the fact that tactlessness is the single most prevalent trait I inherited from my mother.)

"I drove across town to cut my husband's pancakes."

The aide followed me into Mr. PNU's room, where he watched as I spread the syrup and butter on the cold breakfast, and then used knife and fork with my two good hands to separate the pancake into manageable bites.

Excuses were: Indications on the delivery slip say my husband is supposed to be capable of cutting his food on his own even though the stroke has rendered his left arm useless. If he needs help, my husband should use the call light for the nurses station even though the stroke has stollen my husband's consistent cognitive capability to express his needs.

I stayed with my husband for the next four hours, aiding the nurse to change is brief twice, running errands for water, listening to his commentary of the Turner Classics Movie channel Memorial Day cinematic fare, trying to get a few winks of badly needed sleep in the bed next to him. At 1 p.m. the lunch tray arrived. I repositioned the bed to accommodate my husband with access to his bedside table, and I lifted the lid from his plate. Lasagna, garlic toast, fresh steamed green beans, a glass of milk, a glass of cranberry juice, and an oatmeal brownie. I asked if he needed it cut, and he said he could manage. He took one bite and pushed the meal away.

"How is it?" I asked.

"Passable."

"Isn't it good?"

"You try it and you tell me. Weren't you going to bring me a jalapeno bacon burger from JCW's today?"

I took a bite. I admit that at this point in the day I hadn't eaten breakfast and I was starving, but I thought the lasagna was delicious. For the last few days Mr. PNU has eaten less and less of his nursing home meals and has made requests for outside food to be brought in. After sampling the lunch I confronted him.

"I don't mean to make you feel bad by this, but we no longer have any income. It costs almost $14,000 a month to pay for your care here. The kids and I are reduced to using food stamps. This food isn't bad. You aren't going to be able to maintain your foodie habits and preferences while this is the case."

My husband appeared crestfallen, so I offered, "If I can eat your lunch I'll go pick up a burger from JCW. Does that work?"

He nodded and I scarfed down the lunch. Except the brownie and milk. My husband gobbled those down while I was working on the main dish. Then I left to cross town to the northeast for the burger. The car engine got hot on the way over to JCW and I swung in to Jiffy-Lube for a fluids check. I called my husband and told him that I would be delayed, but that I was hurrying the best I could.

"That's alright. I know you're doing your best. I can be patient," he said.

Forty-five minutes later I arrived back at the nursing home with burger, fries and Coke Zero as ordered. I rushed upstairs and found the aides preparing to shower my husband. They said they didn't mind waiting for a few while he ate and left me to set up his lunch. I unwrapped the burger, placed the fries next to it, and inserted the straw into the lid of the drink. Mr. PNU picked up the burger, looked at it, grunted, and put it back on the bedside table.

"I'm not hungry," he said. "I already ate my lunch, you know."

"No, you didn't. I ate it, and you asked me to get this for you."

"I know I did," he said and picked up the burger again. "I guess I'd better try to eat it so I'm not acting like a spoiled asshole."

"No, don't worry about it," I told him. I rewrapped the meal, placed it back in the bag, and excused myself without looking at him so he wouldn't see my tears. On the way out I told the nurse and her aides that they could go ahead with his shower.

I could go back tonight, but instead I'm giving myself an evening of self-care. Mr. PNU's daughter has spent the last three hours with him on her own, so he hasn't been left alone. But I'll be picking her up in ten minutes for a 7 p.m. viewing of Madmax. She agrees that taking the night off is best for me. I'm trying to allow myself to believe she is right.

Before the stroke, my husband would never have behaved as he has today, in a manner that's becoming more and more common. Before the stroke, he did everything to ensure that in our marriage we took equal share. Anymore, that can't be the case. He is almost completely dependent. Verbal. Cognizant. But very much like an infant in his needs. So although I haven't lost him, nor his love for me, I have lost the aspect of our relationship where he can build me up emotionally. 

I remind myself constantly that what Traumatic Brain Injury has left in its wake is not the person my husband is, but this disability absolutely impairs his capacity to exhibit all of the personality traits of the man I married. In marriage, spouses and circumstances change, which is why we commonly vow to love for rich or for poor, in sickness and in health. I love my husband's remaining abilities, the things not lost: the warmth of his body, his presence in the world, his wit, his handsome charm. But although some days I find myself offering words of gratitude in prayer for what I'm learning from this challenge, I do not love this stroke. I do not love what it's robbed from me. I do not love what it's taken from my darling boy who lays in a bed, unable to feed, bathe, or otherwise care for himself. I do not love feeling helpless to my weakness on a day when I have very little to offer anyone and I feel guilty offering myself a break in order to provide myself with care.

Saturday, May 16, 2015

A year for the birds


This is where I commemorate a year's melodic birth, where I celebrate the end of a year and a half I waited for stars and ethics to fall in line, my perseverance paid off, poems written, a phone number awkwardly scrawled and haphazardly pushed across the table at the end of all complication. This is noting the five anxious days it took Mr. PNU to finally call.

This is remembering meeting him for a Friday night film I can barely recall, the sweaty palms and posturing I couldn't get right in the seat next to his, the texture of his arm briefly touching mine, the thrill of proximity, the problem of following Tilda Swinton and Tom Hiddleston through a plot when all my mind's focus belonged to him. 

This is savoring the flavor of the Himalayan Kitchen, listening to his after-dinner thoughts, sharing a few of mine. This is the laughter and gravity, wandering through the City of Salt at night, picking our way along City Creek and happening upon the sleeping homeless wedged between some cobbled wall and the sidewalk. This is the monument of trusting him with the odd narrative of the month I spent in a homeless shelter in Santa Monica of the 90s, and the driving desire I've carried from that experience to make a difference in the lives of the lost. 

Somewhere in this story is where he stops at a bridge, turns to face me, and asks if I ever tried to make something happen between us before it could. This is how I explained that upon employment as his TA I read the university's sexual harassment policy twice, and that I understood nothing could happen while he was my supervisor and I his grader even if I wanted it to. 

This is where my throat catches in the culmination of all anxiety and hope, as he takes my hand, asking me if I would be his girlfriend now. And here I am, barely a year ago, exhaling an answer in a voice I'm not certain either of us heard, but that might be compared to the breath of a thousand sighing angels, or an exaltation of larks taking wing. But that first kiss that followed, it will forever defy description. We stole a dozen more as we continued journeying those magical May sidewalks, laughing "us" into creation until 4 a.m. as time crept so deep into morning that out of necessity I drove home to my sleeping children before they woke. 

When I pulled into my cul de sac an hour later the birds sang at my arrival. My heart, time, and all the winged things, how they've sung ever since. 

Tuesday, May 12, 2015

Most of the time I even astound myself, but tonight I find myself altogether human. He asked me to take his hand for reassurance, and because his expression suddenly changed I realized that, rather than asking me to help him use the plastic urinal on the bedside table, he's wet himself again.

Love in the ICU


Twenty-four days ago, after my husband had been filtered through the admission process and wheeled into the first room of four during his stay at UVRMC, a nurse handed me a form which asked what questions I might have for the doctor. I am almost ashamed that the only thing I was worried about discussing was our eventual return to sexuality. Except that a week later, when the swelling in Mr. PNU's brain finally stabilized and he was able to remain alert long enough for the first few sessions of physical therapy, sex was his preeminent concern as well.

"I want us to talk to Dr. Call," he said, still caught in the groggy haze of the swelling. 

"What about?" I asked, and he raised his eyebrows flirtatiously. 

"Come here and let me whisper something to you," he said. His voice, flat and expressionless, a symptom of the brain damage, reminded me of Dustin Hoffman in Rainman. I leaned in. "I want to put my mouth on your naked body," he said, without dropping at all in volume. I laughed, maybe somewhat uneasily at his disinhibition. Mr. PNU seemed drunken with coital desire. I promised him we would speak with his physician, and then my husband fell back to sleep.

For the seven months leading up to this stroke, my husband and I have enjoyed a sexually healthy marriage. My husband introduced me to the word "libidinous" to describe our similarly insatiable desire for one another. Where previously I'd been told I was hyper-sexual or over-sexed by ex-husbands, Mr. PNU and I were perfectly matched. A typical day began at 7 a.m., when the alarm went off and we shared the work of getting my youngest son off to school. Then, since my other kids were already gone, we frequently went back to bed for an hour or so of not sleeping until 9:30 a.m., when we had to get ready for the day. We decided before our wedding that we wanted to "try for a baby" right off the bat, since neither of us is young and my window of fertility is near its close. Our practice hasn't yet produced a child, but I have come to see sexuality with my husband and the physical expressions of our love as a kind of fervent worship, more transcendent than ever imaginable. Sex that creates safety. Sex that brings one closer to God. Sex that heals.

The day after my husband's request, I took young Dr. Call aside privately and explained our concerns. He blushed. I didn't know doctors could blush. But after explaining to him that, no, we wouldn't be going all out conjugal, we just wanted to get clearance for a hand job, I dare say this poor doctor wasn't sure what to do with himself. Our nurse, Kim, however, was sweetly delighted. She agreed to have the cameras turned off in Mr. PNU's room, and she made a "Do Not Disturb" sign for our door, complete with red hearts drawn with a Sharpie.

We managed two more repeats, each in different rooms before his discharge this afternoon. I joked that it took a stroke to make us once-a-weekers like most married couples. Mr. PNU, on the other hand, only joked about our doubled use of the full-length mirror physical therapy left in his room. Otherwise, he told me, those precious hours we fooled around in the ICU were the hours he felt the most clarity, the most whole as a person. Normal again. He questioned me, whether I still find him sexually attractive. I told him the truth. Prior to all of this, the thought of sexuality with a stroke patient never crossed my mind. But I do think he's sexy; I still desire him as much as I did twenty-four days ago. 

Intimacy of this nature is still intimacy. But our old tricks do not work the way they used to. I do a lot more maneuvering than before, and I must be willing to offer a greater level of generosity and selflessness to ensure that we are both satisfied. In a relationship where neither partner is disabled, the scales would seem unfairly tipped. But  if my husband is to make love at all, halfway isn't a fair meeting place. He asked me this last time, mid-act, if our love-making was charity sex. I didn't answer. I couldn't. I just pressed my lips harder against his, shuddering through my tears, feeling the fullness of life within him as we defined our marriage again—I with my body and he with his—finding the pure pleasure in making love in the ICU.

Tuesday, May 5, 2015

Miracle of love


Tonight, I am accepting that my miracle is that my darling Mr. PNU is still here. After the rehabilitation consult this afternoon the evaluating physician told me that for a man to suffer a stroke as massive as my husband's and still be alive is astounding. 

The prognosis otherwise is hard.

I'll be searching for a longterm nursing home facility for my husband in the coming week. He is expected to live there for the rest of his life. He will not walk again, though I've not given up that at some point he will learn to sit unaided. He will not teach again, though we agreed tonight that writing a book together is something we're both eager to do. He may eventually be able to eat again, but for now the feeding tube and IV are his primary source of nutrition. 

I'm already assisting in bathing him, cleaning him after his bowel movements, and feeding him soft foods when allowed. Tonight we listened to jazz and cuddled in a hospital bed that is far too small for two people. He cracked jokes about his feeding tube, and his blue lips from the dye used during his swallowing evaluation. We read seven verses from the Book of Mormon, 1 Nephi 21:1-7, and prayed together. He made me promise that no matter what we would always do this and I readily agreed. He apologized profusely that I'm being affected by all of this. I begged him not to mention it, since, even knowing what I know now, marrying him is the best thing that's ever happened to me. HE is the best thing that's ever happened to me. 

I promised him I will visit every day. I will read to him. I will bring him music, and write him poetry. I will fold a thousand paper cranes and hang them from the ceiling in his room. I will bring him treasures and share common pleasures. I will hold his hand, lay in his bed, sometimes press my body, naked, against his body. And someday, somehow, we will make it to the temple and we are going to be sealed because I'm going to be his forever.

"Yes, you will," he said. "Because I want to be with you always."

When 10 p.m. arrived and it was time for me to go home and tell my children, I stood in the doorway hurting that I will never bring him back with me. 

"Goodnight," I told him. "I'm sorry."

He held up his right hand in something like a gang sign. Not quite an "OK".

"What's that?" I asked.

He responded so softly I couldn't make out what he'd said. I came back into the room, back to his bedside and asked him to repeat himself.

"Half a heart," he answered.

I held up my right hand and made the same. And then I left half of my heart in that hospital bed and I drove back to one half of our home.

Saturday, May 2, 2015

How you can help

In times of crisis, when people ask, "How can I help?" I sometimes think what they really mean is: "I have a very specific way I think I can help you. I hope it's what you need, because I'm not willing to do more than what I have in mind." 

I have a handful of fabulous gal pals who each check in on me every few days or so to see if I want to have lunch or dinner, because that it what I told them I need. I suspect I have an entire Relief Society of women who think I don't want help, or that I haven't asked for it because I've specifically turned down meals. I'm rarely home. My children are rarely home. Meals fill the limited space in my refrigerator and go bad before anyone at home thinks they might be hungry. This means meals brought to us cause more trouble than if no meals are brought to us. I've been grateful for the three meals anonymously slipped into my fridge, but most of it went straight into the trash because it went bad after I had a serving or two.

I've been asked what I need, so I think a list is in order:

(1) Flowers. Fresh-cut from a garden, store-bought, picked from a field—I don't care about origins, I simply long for the cheerfulness of blossoms in my house. Mr. PNU picked flowers for me all the time. He bought me a couple of bouquets. We cut them together. Flowers in my home symbolize a season of regeneration. That is the miracle I'm praying for each day.

(2) Letters/notes in the mail. Bills and notices from the state are pouring in to my mailbox. I adore mail. It is terribly old-fashioned, but it makes me incredibly happy.

(3) Poetry. I must have poetry in my life. I will be attending SFYS once a week as an outlet. I plan to try and write more lines, maybe even make it to the readings sponsored by Rock Canyon Poets. I also deeply appreciate poems passed along by like-minded lovers of language.

(4) Friendly visits at my house. I am largely a single parent again. The worst part about belonging to this demographic is the social isolation. I love people. I make it a point to pray daily that my home is a refuge and a place of comfort and love to all who walk through my front doors. Come. Visit me and tell me about your life. I want your company. After marrying Mr. PNU, loneliness was something I never thought I'd have to battle. There is so much emptiness since his stroke. So many rooms of joy to fill with other people.

(5) Usefulness. I NEED to serve. Let me know what I can do for YOU.

(6) Understanding. Love means we give people room to feel and acknowledge their emotions. Sometimes I think people mean well when they try to cheer those in crisis. The motive doesn't translate well through the invalidation. When Jesus reached Mary and Martha to find their brother Lazarus dead, he didn't say, "Everything happens for a reason." or "You'll be blessed by this trail." or "Just stay positive." He wept. Although he knew he had the power to raise his dead friend, although he did, first, Jesus Christ experienced grief with and compassion for his friends. He didn't correct them in their anger and frustration. He listened and he wept. 

(7) I need to be allowed to go through this trial in human ways without judgement. Somewhere in the strange order of the universe, I've managed to fall in line with more tragedy than most people I know. I'm not diminishing anyone else's struggles, but I promise, repeat crisis and hardship effects a person deeply. I've learned to accept that processing loss, grief, and trauma is messy. I've also figured out coping mechanisms that work for me. This doesn't mean they'll work for you, or that the way I cope is going to make you feel comfortable. But when we give each other space to feel out the edges of human experience, trial of this nature tends to bind people together. Pressing those who are dealing with hardship into prescribed constraints of "correct" behavior or reaction has the opposite effect.

(8) Accept that I'm not shutting anyone out, but I don't have a lot of room to extend my energies. It does me good, gives me energy, when others take the time to let me know they care without expecting anything in return. I've been bombarded with Facebook friend requests from strangers for two weeks. I've allowed people into that part of my life, where naturally I'm very selective about the people I share my life with and quite private. Understand that if you find yourself removed from my friendlist it isn't because I don't wish for your interest in my husband's struggle. Read his blog, please. Continue to send him words of encouragement. But I need to retreat back into my private little shell in order to deal with the grief, pain, and difficulty of loss that, today, feels worse than if I'd experienced a death.

The last scan and coasting



I woke at 5 a.m. after three hours of sleep and thought about running away to the Oregon Coast. Not forever; just a few days of sand, sea glass, and the cold surf. The thought still appeals to me at 9:43 a.m., after another three and a half hours of sleep I owe to Ativan, but I'm less likely now to make good on the impulse. How would that look? A wife, two weeks following her husband's stroke packing up and bailing to a remote sea shore? 

Last time I did something of this sort—and by this I mean resorting to drastic measures and a plane ticket in an attempt to find balance and peace—my parents flipped out, certain that I'd gone crazy and that they'd be left to care for my kids. It's funny how everyone else is allowed to grieve and grapple with strong emotions unless affixed with the diagnosis of a major mental illness. Then, if tragedy and trial crops up, you are expected to behave in a perfectly rational manner or those around you (who I might add aren't in the same position of excessive strain) panic that you might go off the deep end. Falling apart in crisis is only afforded to the mentally healthy. 

Ironic. 

Like when my step-sister came to school in her senior year and told everyone her mother had died of cancer. It's true; her mother had cancer. But the woman was still laying in her bed, breathing without aide, brainwaves active. My step-sister has always received a pass for this episode because "no one can imagine how hard it is to lose a mother to cancer." Except that I did lose a parent, first to the effects of an astrocytoma and Traumatic Brain Injury, and eventually to death. But instead of being allowed to react at all, I was expected to behave as I was told by my mother and step-father. This included going along with their insistence that I not attend his funeral. I don't know when I'll be over that.

Two weeks ago I lost my best friend to ischemic stroke and Traumatic Brain Injury. For most of these fourteen days I've been everyone's champ, all-star, cheerleader, the girl with her shit together. I did what had to be done to get our family into a operational financial position. But yesterday, and maybe even stretching into the day prior, I started to get a sense of what this really means in my life. The big possibility that no one wants to talk about, but that I've already experienced as the daughter of a man with similar brain damage. 

My earliest memory of my father is the day he came home from the Veteran's Hospital after recovering from the first excision of his tumor. His flat affect, dull gaze, and monotone speech terrified me. I never stopped being frightened of him. He mostly slept. But there were flashes of impulse aggression and rage that punctuated his behavior. I learned to dodge blows, to bolt out of my starting blocks and keep running till I was fall enough away that I knew I was safe. And then, there were the mind games. He'd been an intelligent man, and cognitively reduced by brain disability made him clever and mean. My mother had every right to collapse under the strain of that marriage. And she stuck with it for 16 years before bringing false allegations of child sex abuse against him that she felt justified abandoning a disabled spouse. Trust me; she had plenty of reason to leave him years earlier.

As I've contemplated taking off, my impulse hasn't been motivated by fear of a repeat of the behavior my father exhibited. It's because, as friends and family stood around my husband's hospital bed the last fourteen days, he was right, we were all at the funeral for his brain. I'm assured by so many, who've never known life with TBI, that miracles happen, all will be well. And I've tried to assure them back that I'm adaptive. And really, who out there has had to deal with the repeat dramatic life shifts I have? This isn't self-pity. It's the mean part of me coming to call on credit due. 

Who's reading that can say they've suffered child abuse, or cold/inflexible parenting and the unreasonable marginalization of "family", or a major mental illness, or single-parented four kids for fourteen years around three ex-husbands who each degraded/abandoned/abused them before the most amazing spouse in the world miraculously popped out of the woodwork only to have a massive stroke after six and a half months of marriage?

I've watched the clamor of his friends and family suddenly eager to jump into his life. Where were you when he was lonely for the ten years after his first wife left him following an emotional breakdown? Where will you be in another two months when our lives are still in turmoil but the media hype has died down? Here? Reading this blog like so many other concerned voyeurs?

I am basically a single parent again, but now I have a step-daughter to support emotionally, and a completely dependent spouse. Tell me that I'm not supposed to feel overwhelming anger and grief. Sometimes I think God wants to beat the snot out of me. Except that no, everything does not happen for a reason. I simply seem to have a way of drawing the short straw every time chance has some crisis to deal out.

Who wouldn't need to run away? Who in their right mind wouldn't crumble? Whom of you could honestly say you'd do life any better than I have? Once again. I am tired of this life. Until Mr. PNU I hoped my remaining years on Earth would be brief. I'm beginning to hope that again. I am world weary, and I miss my best friend with a vicious despair. Do you think God will bring him back to me? Do you think God has ever answered my prayers the way I hope he will?

Except for Second Set of Wings I'm off the social media grid for a long while. I'm done with the distant TBI dog-and-pony spectacle. I still live at my house for those who'd like to come an sit with me and actually give me comfort. Otherwise, I'm done bringing my crisis to the central arena. 

Friday, May 1, 2015

Orogeny

Because Mr. PNU and I need separate places 
to discuss emotions 
involved in the recovery process, 
you may read his side 
of this excursion