Friday, July 31, 2015

Another set of wings

We always want to remember them as this fresh, this full of wonder, this unburdened by the world.

I didn't have the luxury of parents who lovingly helped me toward the edge of the nest, and so I wasn't prepared for how much it feels like exploitation, how they glean every bit of information and your final bits of world savvy in one last mad rush, whether that mode of handling is necessary for their survival or not. I'm still not certain what to do with the belongings she left behind and what they mean. I'm not ready for the moment I know is coming, when it all hits, that the vacancy is for real. She's finally grown and gone. Even if I had known how other parents approach the end of their firstborn's childhood, I don't think I'd be prepared for how abruptly hers ended, for how unrehearsed I was once it arrived. 

She was distant on the phone tonight, farther away than I'd ever planned, inhabiting a space entirely separate and independent from mine. Maybe I was a little too matter-of-fact in my tone, but something in me didn't want to appear vulnerable to the emptiness that now exists in the room next door. So I asked her what she was planning to do with the things left behind, since moving out means taking it all with you. Because that's what my mother had expected; that I take all trace of ever having been there in the first place.

Among photographs I went through this morning I found one I'd thought to take when she was about two or three. It's an odd image—small handprints in the condensation on an early morning kitchen window. She'd have had to climb onto a chair to peer outside. I must have cleaned the windows after I took the shot; I was fastidious then. But I'm thanking myself now for having the presence of mind to capture the handprints left in a moment she stood at the pane, staring in safety beyond the boundaries of her home.

I wish somehow it were the case that I'd never stopped filming, that I had image after image of her. I wish that I could step into the frame again, just for an instant, take her in my arms and twirl her endlessly in the light of early morning, safely through the afternoon bumps of the world, until I tuck her into bed at night. Or at least, I long for these wishes to fasten themselves securely to her back like wings that know the way through all her future storms.

I will lay awake here for hours tonight hoping her dreams are sweet and deep. I will remember holding her until dawn.

Wednesday, July 29, 2015

The silence between the stars

My guess is the answer is that you have no idea what this is like. And I'm guessing without giving you the benefit of hearing the question. Why should I?

There's a person in a bed across town that I haven't spoken to today, and even though I've cared for him for months in a row, cheered for his unlikely full recovery, drunk the faith and hope Kool-aid so to speak, pragmatism gets the best of me. Tonight it's got my tongue and I don't want to speak to him.

Why should anyone out there care? This blog was never meant for mass consumption. Longtime readers know that. If you joined in fourteen weeks ago, my guess is you're just here for kicks and giggles—the dog and pony show. If you're even still around. Shit gets real and frankly readers get tired of real. This ain't no hope pony. 

As I left Anick's office this afternoon she said, "Life's not fair."

That's the best she could do. Thanks doc! It's good to have my head and expectations all shrunk down to a palatable size.

There was this philosopher, this magnetic man, who I could not stop thinking about even when I tried. I climbed mountain after mountain, and my mind always found him somewhere at the top. I signed summit logs repeatedly, and every time this guy was on my mind, wanting to burst from the end of the pen and let every other climber know, "She's hiked all this way and she's still thinking about me!" 

And now, I get people telling me about losing their son, their brother, their friend, and about the decades they had with him. What do I have? I can't answer that question. I have people pointing out things about the man who lays in that bed across town. It's still him, they say. Really? I don't know the guy they seem to recognize. I'm getting to know him, slowly, and what he can do. But I do know that I don't like telling lies, hate the whitewashing that I have to do so that I don't feel like the realist creep. 

He told me a week ago that in the future he sees himself riding his motorized chair to the train station, catching a connecting bus to the university, teaching his classes solo, riding back to the train station and coming home. I don't know how to tell him that where we are right now, even with all his progress, that's a complete impossibility. I don't know how to tell him that right now, even with all his progress, that I still don't foresee his return home in the near future. I make up pom-squad go-fight-win routines that are lackluster not just because I always hated cheer leading, but because when he comes home I'll be confined to caring for him like a child 24/7, ensuring he gets to appointments, ensuring he doesn't fall or go outside unattended, ensuring he has stimulation that keeps the new normal bearable. And ladies and gentleman, the hours and hours I give him now aren't cutting it. I'm a feature in the wallpaper.

He's retracted into this gloomy, quiet shell. The boy I knew who was always bursting with things to tell me, dying to share every thought in his head, barely responds when I am around. My enthusiasm for life no longer amuses him. He doesn't care about my poetry. He doesn't laugh at my lame jokes. He hardly looks me in the eye. Sure, he appreciates the sex. But what girl with a mind wants that to be all?

I shouldn't be angry when he brightens for others, when he starts bubbling with film criticism and philosophy with visitors who don't so much as ply him with queries. They just arrive and receive the gift I work for each day. For me, he is either murky and distant, or he cries. Where am I supposed to find the pull-string for joy? I've sort of become the worry beads. The go-to when there's anxiety, and there is always anxiety. I must be a permanent feature of the room, even if I'm only treated like decor. So why should I want to be there wringing myself out? Why should I care that I was right, there's a new blood clot? Why should I hang on to this moroseness when in my heart of hearts I don't see full recovery? 

I think that kind of faith is stupid. I think it's a self-serving concoction for people who don't have to wipe his ass, or give him showers, or dress him for the rest of his life. 

There was this philosopher boy who once told me I was good, that I was the light in the room. No one has ever said that to me before. My mother has always made sure that I and everyone who knew me was aware that I was a disappointment. Such a nightmare child. Such a rotten, lying, stealing, bound for hell kid. And this same woman has either not shared my contact info with my family, or they have it and no one calls or writes. I have one cousin who's written to me, a step-sister who called the first week to tell me that family gossip was that my husband must have had previous medical issues and that everything happens for a reason, and an adopted sister who texts me hoping to get the approval we never got from our mother, but who never says anything about the stroke. No other family contact or interest. None. 

My house is quiet and hollow. I don't get visitors except my kids friends. I don't get phone calls. Once in a while I get texts for lunch with gal pals. I get lots of mail with scriptures about how Jesus is carrying my burden, how people are praying for me. I walk alone at night.

If people see me they ask how my husband is doing. Well, he's a stroke survivor. Still.

I know you're not asking. People don't ask how I'm doing. I'm having a day. Tomorrow I will have another. The day after that I'll wake up alone again. I ignore my husband's books on the shelves. I ignore his impersonal shelves. I ignore the things he left scattered on his bedside stand. Most of all, I ignore who he used to be. Because he's not that anymore, and he won't be.

And while he's trying to figure out who he is now, I'm being swallowed by facts, and pragmatism, and the dark silence that's replaced my best friend. The darkness only recedes when I begin to disappear. Like clockwork he sends the words "between the stars" like a dog call, asking me to fill the space with strength and energy and vitality that I don't have. Between the stars there is dark matter, and every so often you find yourself pulled into the gravity of the somethings we can't see called black holes.

You're not here to find out how I'm doing. You won't call. You won't stop by my house for a visit. You're here because this distress is more entertaining than Netflix. Because it's free. Because it's not yours. Because you have no idea what it's like, and even though you don't really want to know first hand, it's cool to be abreast of the current drama.

And now that I've pissed everyone off, you know how angry and empty I feel most of the time.

Tuesday, July 28, 2015

How to wrap a successful rebuild

I know a thing or two about reconstruction, and most of the tricks I keep up my sleeve I picked up mid act. The trick I presented to Mr. PNU on Sunday is probably one of the most useful I've encountered.

The concept of wellness is three-fold. 

(1) Identity is based on needs and values.
(2) Needs and values shape actions.
(3) Well actions produce overall physical and mental health.

Ten years ago, six weeks prior to the birth of my youngest son, I experienced a mental break. Spousal abandonment paired with my faulty chemical wiring took its toll. I put in the struggle to stay afloat for three months after I found myself alone, pregnant, already a single mother to three children, and now bankrupted by my second husband. 

My ship sunk and I spent two weeks in a behavioral health unit in the North Country in order to regain a solid footing and start again. But starting over from mental decimation is no simple task. One doesn't simply return to the outside world and resume the activities in which she previously engaged. I was unable to work, and barely capable of maintaining care of myself and my children with the help of a mental health agency and a slew of caseworkers and therapists. The rebuild to independence took a full year. Restoration to my present state, four more.

At first, leaving my house took assistance. I made all shopping trips and appointments with the company of either my caseworker or a psycho-social rehabilitation worker. They made home visits for two to three hours, three times a week to assist me in loading batches of laundry, preparing meals, and endless evaluation of my mental state and the activities necessary to create a health life.

These women helped me build a Wellness Recovery Action Plan, or a WRAP plan, based on my self-image, my values, and the necessities of self-care. The rebuild was incremental. I outlined a personal map of daily activities that I normally participated in when I was at my healthiest: grooming, housework, childcare, dietary, social, and leisure. Around these I created goals; some as simple as brushing my teeth, or taking a 20 minute walk outside each day. During each visit from my mental health workers I filled out a checklist to take stock of my progress. It took months before the word "stability" could be applied to my routine. I was approved for government disability status which opened the financial doors to medical and housing assistance, and after two years on the recovery road, evaluating my gains against this WRAP roadmap, I reached a level of health that allowed me social re-entry as a contributing member of my community. 

I began volunteering at the local high school in the drama department, working with hundreds of young people in annual musical productions. I created a non-profit arts program that facilitated my part-time work outside of the home in a setting that offered dance training to both underprivileged youth and my own children. And although I never fully re-integrated socially in the North Country—an unfortunate result of some of the area's cultural hangups rather than my own limitations—I reformulated my emotional toolbox with enough skills that flow into Happy Towne's academic and artistic communities has proven nearly seamless. 

From ground up, I know reconstruction. The WRAP plan is key.

I explained its ins and outs to my husband this weekend following his fall. He eagerly took to the notion, and Sunday evening we sat on our bed in his room, devising a daily roadmap that he can follow. 

Mr. PNU's identity hinges on his relationships with God, his family, and his friends. He hedges this with his intellectual ability and the value he places on being a good human being. His needs are simple: hygiene, food, sleep, social activities, his therapies, and cognitive work. We outlined his routine, from rising at 7:30 AM and calling his aides to assist him in with toileting and oral hygiene, to a daily check-in with me at 9 PM when we read scriptures together and offer our couple's prayer each night. His goals include being in bed for no longer than 45 minutes at a stretch, making phone calls and attending nursing home activities to initiate social interaction, reading for 1-2 hours each day, doing Lumosity exercises for at least an hour, and spending an hour each day with me enriching our marriage. I've taken these—schedule and goals—typed them up in large font to hang on his wall, where, depending on the time of day, Mr. PNU can self-manage his own recovery.

If Monday's implementation of this approach is any indication of how well the WRAP plan works, my husband is well on his way to cutting through the physical and cognitive barriers that hinder his return home. I can't take credit for this methodology, but I've lived it, and I think Mr. PNU sees me as a kind of testimonial to its efficacy; enough so that he's invested himself completely in the concept. After five years in their care the North Country mental health agency that introduced me to the WRAP plan referred to me as their success story, though I was never comfortable with the title. 

But perhaps now, being this side of recovery and at a point where I can use the skills I've learned to help my husband who is desperate for his own rebuild, I am.

Saturday, July 25, 2015

The fall

The road to hell and it's pretty intentions.

I'm in bed early again, this time drugged with both melatonin and a full milligram of Ativan. I usually ration these out of fear of addiction, but tonight, no holds barred. 

Mr PNU tried to pull off another act of heroics, even more impressive than walking, and ended up flat on the ground with contusions on his left shoulder, elbow, and knee. 

I arrived at the nursing home early afternoon with the intention of showering my husband. He'd called me early in the morning to say he'd gone to the PT gym on his own to do some standing therapy and some weightlifting. I'd asked him yesterday if he couldn't make a phone call to a family member for help with our recent $6,000 repayment fee, and he told me this morning he was feeling very worried about making the call. My husband has known anxiety as long as I have known mood instability. I know not to add to his stress, so I told him to let it go; I would deal with the matter. When I arrived at his room I found him in bed with his call light a brilliant glow. 

"Do you need something?" I asked. Usually I can do anything he might need the aides for. 

"I peed," he said. He's been working on calling for help to get on the commode when he needs toileting. The fact that he hadn't bothered this time surprised me.

"What have you done besides PT today? Read? Lumosity? Call people?" I asked, hoping to generate a conversation about how his day had been going to that moment. 

He looked at me sheepishly and shook his head.

"Did you go to any of the activities?"

Again, he shook his head.

"What have you been doing all day?"

"Nothing," he admitted. "I've been waiting for you to get here."

"In bed?"

He nodded.

I don't get on my husband's case often. He's been an absolute workhorse this week in the gym, always proactive and doing what he can to be independent. I've been open with him about feeling as though I'm wilting into a sort of slow emotional burnout, and this lack of activity "waiting for me to get there" came down hard.

"You have books, an iPad, a phone, a TV, you can get into your wheelchair at any time to visit other residents or go to activities. I'm worn down to exhaustion and you wait in bed all day for me to come and make life happen for you? Hun, how is that supposed to lighten my load? You say you want to help me any way you can, but you can't even make a simple phone call in our behalf."

"I was worried because it's not directly related to my medical costs."

I started bagging up his laundry, choosing my words carefully. "I was doing so much better before I met you, which isn't to say I'm not glad I did. But right now I'm suffering financially in a way that I wasn't before we got married."

He grew silent. I finished piling the urine and feces-stained clothing into the plastic bag, cinched it tight, and walked out. I cried all the way down the hall until an aide asked if I was alright, and then quickly pulled myself together. I hate appearing vulnerable to the aides. I'm supposed to be the poster-child for nursing home wives. When I got home I started the laundry and went back to bed for an hour until Mr. PNU lit up my phone. I let the voicemail answer it, and then listened to the message.

Hey. I did something stupid. I tried to come home, but my arm and leg fell off of my wheelchair in the parking lot and when I tried to pick them back up the chair fell over. I'm back inside now, and I think I'm fine, but the nurses will probably be calling you.

When I got back to the nursing home Mr. PNU was sitting in the wheelchair in his room, his elbow and knee scraped and bleeding. The apology was on his tongue as soon as he saw me.

"I'm sorry. I know that was stupid, but wanted to do something heroic. I wanted to come home. I made the phone call. Can you please hold me?"

I held his tense body in my arms, and he leaned his head against my shoulder.

"Do you want a shower?" I asked. He nodded.

As I soaped him up in the shower chair, gingerly dabbing at the wounds on his body, Mr. PNU explained that the fall had come during his second attempt. During the first, he'd been apprehended on the sidewalk by Joe, a friend of ours, who recognized that my husband shouldn't be out on his own. He wheeled Mr. PNU back to his room and my husband, as he does with all Melchizedek priesthood bearers, requested a blessing before Joe left. Our friend obliged. My husband told me that for the second time in a blessing he was advised not to worry about me, that I'd find my way on my own.

"But you tried to come home again?" I pressed.

"Yes. Almost immediately after Joe left. I'm sorry. I know it was stupid. I promise I won't try it again. I wanted so badly to help you."

"The small things you can do here help me far more than you coming home right now ever could," I gently told him. "And though these thing seem insignificant they build up over time so that you will be able to come home."

Then I told him a couple of stories about time I'd wandered somewhere farther than I should, because we all deserve to feel empathy, even when we make bad decisions. But I took note that even as Mr. PNU is advancing in his physical capabilities, cognitive deficits—impulsivity and lack of insight—are coming to light. Earlier this week, shortly after his first few steps with the walker, he began saying that coming home must be just around the corner. I'm teetering around the ethics of how to respond both compassionately and with realism. As soon as my husband is ready to come home, that's where I want him. But with two person assist in and out of bed, on and off of the toilet, we're still months from that goal, and being in the nursing home where he has daily access to physical therapy is ideal during the first year after stroke. So I try to help him focus on the successes he's had at the end of each day, instead of allowing him to measure himself against the mountain that still must be climbed. And I try to convince him that we have reason to be happy where we are, every day. That's part of the emotional wear on me; positive realism is not easy to conjure day after day. 

After his shower I let him hold me for a long time in bed, even slipping off to sleep in his arms as he said our couple's prayer for the evening. I reminded myself that I need to cherish and be grateful for every single day we have together, and even toyed with the idea of staying there all night. But since the nurse was still conducting neuro-checks every half hour because Mr. PNU said he'd hit his head in the descent, I  roused enough energy to drive the three miles of potholed road skirted on either side by havoc-strewn sidewalks through the seediest parts of town. 

Friday, July 24, 2015

Dreams of sleep

I get worried 
when my husband reports only sleeping six 
or seven hours a night.
I'm a hypocrite.

I spent five hours with him today,
instead of my average—eight.
We did physical therapy together,
took a walk to the local Gandolfo's for lunch,
visited Pioneer Day festivities in the park down the street,
joked around in the shower room bathroom while Mr. PNU sat on the commode,
ate ice cream in bed and shared stories about our Mormon ancestors,
cried over how hard stroke is on both of us,
and then I begged need for sleep.

 I've been back home in bed, since 4:30 p.m., needing sleep, but not sleeping. 
It's now 7:49 p.m.
I'm trying to forgive myself for exhaustion, 
like it's some kind of horrific sin, 
or a glaring manifestation of my inherent inadequacy
at being wife and support to my husband.

I lay here,
so very tired,
and I don't sleep.

If I take five milligrams of melatonin now
I may get a full eight hours for once
instead of six, or four,
or three.
You know, all of those common sleep numbers.

Caregiving isn't a thing I resent, ever.
My present lack of sleep and total inability to do anything 
without feeling the urge to cry 
is another matter entirely.

Tuesday, July 21, 2015

Out of a hat

He says we'll look back on today and remember it for braving the bus system to go see Inside Out, for the turkey sandwich he ordered from Which Wich with lite mayo and bacon because he wanted to both avoid a gallbladder attack and also eat a Turkey Club. And he's right. The three and a half hours we spent out on the town, alone, celebrating will definitely be a happy recall. 

But I will remember this day best for the text that came in at 2:15 p.m.:

Did you hear my voicemail? I walked!!!

I will remember 2:53 p.m. when I finally checked my messages and placed the call to my husband from the Art City splash pad where B— was having a playdate with his best pal from school. I will remember trying to contain my heart within my chest as I left my son in the care of his friend's mother, sprinting in flip-flops across the soggy grass to my car, and speeding the five miles to the nursing home. I will recall trying to mask my impatience as I helped my husband urinate into a handheld urinal, before calling for an aide to assist me in transferring him into his wheelchair, and then wheeling him as quickly as I could to the physical therapy gym. I will remember the heavy anxiety in the silent minutes we waited together for our turn with Tina as she finished with her last patient.

And I will never forget the stupid grin on my face, knowing that I was being filmed, as I walked behind my husband for the first time in 13 weeks and 2 days. For the camera I stuck to that smile, because I was ugly crying—sobbing really—with snot running down my face. I'm usually cheering and calling commands in the gym, but today I've found myself repeatedly dumbstruck. My husband offered interpretive dance, his latest soft shoe routine; an improvised thirty feet across the length of the gym floor. One who struggles with something out of nothing might call it the "Miracle Hat Dance."

No one forgets a performance like that.

Sunday, July 19, 2015

Movie and dinner

Happy Towne Temple.

Some are calling it a miracle. 
I'll take that as a thank you 
from those who just don't get what it takes 
to be a caregiver. 
My husband thanked me. 
He gets that, in most cases, God doesn't pull extraordinary out of a hat. 

That's good enough for me. My husband is welcome.
It was like five hours of normal
that I wish could have lasted forever.

I'm willing to continue putting in the work to make that happen.

Friday, July 17, 2015

Catch and release—a fairytale for grownups

A story about fishing for something that doesn't belong to you:

Once upon a time, there was a girl who met a boy at Rocky Horror Picture Show. And somehow, during the Time Warp, they became entangled on stage, and stayed that way for the next month.

Some April moon it was; a magical waxing and waning. Delusional, really. The girl was certain she'd found the deepest love. And the boy managed to get as deep as a boy could, until he hit the bottom of his conscience, finally confessed that he had a long time girlfriend in a city a hundred miles away. His lover thought he was just taking a break—the off-again portion of give and take. And the delusional girl of our story didn't want to be all heroic or a martyr over this, but yeah, no one wants to be second pickings. She let the boy go. And though their paths kept crossing, she never thought to make a move to steal him back as hers. She never thought she had any sort of claim on him, although she harbored the secret belief that their month had something magical that he certainly must have recognized too. 

And then, ten years later, the boy had a tragic accident, and the girl saw him one day crumpled in a wheelchair at the grocery store with his wife looking weathered. Her first thought was to reach out to him, to tell him how much she cared, to say that he'd always been something special to her. But she hesitated. She asked a girlfriend how to go about writing to him. What was the right thing to say? And that girlfriend gave her the best advice anyone can give or receive—

"He's not yours. He's hers. She's his. They are theirs. 

Your letter is for you. Don't write it. Don't send it. Just keep letting go."

The boy's wife left him after five years, because broken people are heavy and her love wasn't strong enough. He spent his time alone in a longterm care facility, online, nothing magical. And one day he found the girl.

They bumped into each other then as they had fifteen years before on a crowded stage, completely in the dark. And she got the nerve to ask him, "Was it the same for you as it was for me? Something special with awkward timing?"

And he answered honestly, "No. It was just sex."

So reader, let me give you some sage advice. Books close mid-story for very good reasons. Your part in the plot fizzles. The characters grow bored. The tale is little more than a trifling. Your Prince Charming isn't yours. The trick is learning not to try and reopen the book. Other people's stories move on without you while your tale spins aimlessly. And unless you really can't find a way to start your own plot where you're not a wicked witch, keep in mind—

He's not yours. He's hers. She's his. They are theirs. 
Your letter is for you. Don't write it. Don't send it. Just keep letting go.

Saturday, July 11, 2015

Three months on an island

For all the chastisement I receive, disguised as words of encouragement and someone else’s certainty that Mr. PNU will pull through and come home, I wonder how many other caregivers feel completely alone in this journey? 

I’ve been self-censoring—for myself, for the perceived sensitivities and expectation of others—none of it helpful. 

As the twelfth week since Mr. PNU’s stroke arrived this morning, my awareness of this censorship grows more acute. Why am I hiding my truth? Who is above facing reality? And am I protecting others from truth, or am I protecting myself because I know so many well-meaning folk are in denial and I feel compelled to help maintain their self-deception?

I lay in bed two days ago, my head resting on my husband’s freshly-showered chest, and he shook his fist threateningly in the general direction of the rest of the universe.

“I want my life back!”

And who wouldn’t? Twelve weeks ago we were floating through this fairytale newly-wed dream. Both of us veterans of hellish earlier marriages, finally arrived at a bliss that I think we assumed was well-deserved and would justifiably last for decades to come. I believe we privately viewed our happiness was cosmic retribution for the turmoil and loneliness we’d previously known. 

We were deeply involved in each other’s projects and interests both current and future. He was working on a paper dealing with the problem of anger in political/religious disagreement; I was working on an essay surrounding the problem of marginalization and “othering” of the mentally ill in the LDS culture. Together, we had plans for collaborative work furthering psychiatric ethics and awareness of mental health issues academically and in our religious community. I was five classes from completing my bachelors degree and we were already discussing the possibilities for grad school. Mr. PNU was preparing to apply for an in-house opening in Integrated Studies. Our kids were thriving. Sure the adjustment to step-family life saw its share of hiccups, but the merger was going more-or-less smoothly, and though we understood that our age posed challenges for conception we were vigorously enjoying the attempt to have a child of our own. 

We woke together, showered together, theorized together, took care of children together, worked together, ate together, exercised together, played together, read together. The near side-by-side nature of our existence seemed interrupted only by job-related distances on Tuesdays and Thursdays when Mr. PNU spent his days teaching in the Valley of Salt and spending evenings with his daughter. Beyond that we maybe separated for an hour here or there, and then only because I am by far the more introverted personality in our marriage and I find solitude the best way to write. 

We were happy, functional, hardly ever squabbled, quickly found resolution if we did. I remember thinking it was all too good to be true. Worse yet, I think I may have thought I’d arrived

Perhaps since I’d seen so much hardship up to this point, the God who’d allowed so much abuse, pain, illness and injustice to saturate the first forty years of my life saw it fitting to allow me to coast for the next forty. The fact that I was prepared, even eager to live another forty years illustrates how irrationally happy I was during those initial six months of our marriage. Before dating my husband I was done, spent, completely resigned to fade out whenever the universe called my number. My previous life was so ridden with distress and heartache that my friends often remarked at my capacity for compassion and kindness. I was often asked: How does a person experience that kind of repeated assault, misuse, betrayal and turn out a decent human being capable of raising children who are in turn decent human beings?

I still don’t have an answer. But I do know that for some reason the universe is not done dishing it out, and the concept of arrival is dangerous. 

We wish we could go back. But now, twelve weeks later, if we could, what would that life look like? We are both irrevocably changed. Entirely new people than we were upon waking to this slow-motion nightmare.

If fishes were wishes.

Today, when morning came and I noted the hour that twelve weeks ago my husband woke next to me, recited poetry, and then complained of arm weakness I began to panic. For every success story outsiders feel pressed to share with us, there are thousands of other narratives that all bear the label “stroke”. If I have one thing to tell anyone who wants to know how we’re doing, or what it’s like, it is that one person’s stroke never looks the same on another. For all those who insist that we must have hope for full recovery because so and so’s brother’s friend’s sister’s father-in-law had a stroke and he bounced back after just two or three months, I have some advice: Keep it to yourself. Your acquaintance’s experience is not ours and it will not be. While we are struggling through recovery your stories hit us like edicts of failure when my husband still cannot move his left leg more than an inch with extreme effort, when he struggles with toileting, when the “fog” hits and his thought processes slow to a molasses crawl and he is unable to engage the world with the clarity he knew for forty-seven years. We’re happy for your friend, but please, keep it to yourself.

Because we might not get any farther than we have in the past three months, and because no one has the right to rob us the moments that we can find real joy and peace right where we are without full recovery.

For every success story, there are countless others where stroke victims don’t make it beyond the first year because of comorbidity and complications beyond the hemiplegia. They die. I’ve read study after study. A prognosis of only four more years of life after massive stroke is common. My husband isn’t out of the woods. We may just live here for however long he has left. This morning that truth was enough to terrify me. He’s devoting all his energy to regaining what he’s lost, and his body is boobytrapped. I face the real possibility that I could lose him at any time. And what then? 

We began texting at 7:40 a.m. And by 8 a.m. I’d poured out my fears, my frantic sense that our time is short, a million texted kisses, and my plea for him to pray for me because sleep is frightening and elusive. He offered to give me a blessing when I arrive at the nursing home this afternoon, and then encouraged me to take an Ativan and rest. We’ll have eternity, he promised. And oh God! I need that promise. I am so overwhelmed at the prospect of renewed loneliness without him. So helpless to the uncertainty of all the months and years ahead. It may seem silly to those who don’t believe. I’m willing to seem completely irrational and comedic in my need for something more, something longer than what we’ve been dealt and however long it will last. The human condition is desperate for healing and comfort. I will follow wherever my suspension of disbelief will take me.

The truth is, because of our continued deep connection, no one gets the enormity of this life change for my husband like I do. And he is the only person who seems to understand my struggle to maintain the angelic support he deserves. We are on this untethered island of recovery, drifting at sea, no shore in sight. We cling to each other. We hold on for the life of the marriage, for each other. We weep together, pray together, laugh when laughter strikes. And then, night after night, I kiss him goodbye, call for respiratory to help him with his CPAP, and I return to the lonely life that bleeds into my periphery once I pull onto State Street and make the drive back to a stranger's mailing address.

Wednesday, July 8, 2015

Some mornings I still wake up confused because I'm alone.

When I left for the week in Oregon, a few people thought it was because I was burnt out. Since returning my husband has told me that a few souls told him I shouldn't be allowed to spend so much time at the nursing home, for my sanity's sake. And it's true; I spend a huge amount of time at the nursing home. But the idea of being barred from being there all day gets me panicky. When we first arrived it seemed right to follow the aide's suit and jump in taking care of my husband like they do. It's been two and a half months. I know where all the bedding, clothing, towels, wipes, briefs, and garbage bags are kept and I help myself as needed. I know all the aides and nurses on a first name basis, and several of the residents too. The physical therapists are my pals, and I help where I can during my husband's sessions. On good days Mr. PNU and I go for walks, read together, blog, watch movies, make love, play in the shower, talk, hang with friends who come to visit, and sometimes we even share takeout.

Everyone welcomed me back heartily last Friday night, and because I was so exhausted from travel I managed to sleep over for the first time. It didn't feel right being back just because I woke up holding my husband's hand. I felt like I was back around family.

I'm learning what all the years I thought I was being open and loving by smiling at people in wheelchairs feels like from the other side.

Inspiration for poetry and plot twists

It's weird. And it's wonderful.
And it's everything in between.
I'm 40 years old and I am having great sex
a few times a week
in a nursing home.

Sometimes, I stop and ask myself,
"Is this my life?"

And then I laugh, and for a spell 
I shrug it all off, 
and think to myself:
No wonder I'm awful at writing fiction.

Monday, July 6, 2015

Stroke of Jazz: a riff on Duke Ellington

“a melody so strange and sweet
In this sentimental bliss
You make my paradise complete”—Manny Kurtz

On Saturday nights at the nursing home, stars push through 
your window and I wheel your body, half light
half dark, on a gurney into the shower room. You lift your head 

and I lather the melodic curve of scull 
where you are busy at work improvising on the two halves 
of what it is that makes us whole.

You do not offer a hand.
Instead, I lift the one that once cradled the small of my back 
as we slept, newly-wed and still equally portioned.

With water and soap I recall for your fingers the static 
remnants of texture and harmony belonging to mine. I web our fingers, 
duet, like the song that played when kitchen dances once slowed, 

soap suds sliding off our elbows, dishes forgotten,
and our lips met in a sentimental mood. I kissed you then
and I kiss you now. My index taps braille rhythms,

syncopated signals sent into the midnight network of your deaf palm.
Somewhere the notes tangle up in the conflux of synapse,
wandering chord progressions in unmapped dark matter. These fill 

the space between surviving neural stars. This is the room 
we need, you say. And you believe me when I say 
that your forgotten limbs are a part of you,

as I trace the vacated pathways along your silent arm 
and leg, as I scat a soapy tune in circular motions, conducting notes 
upward where nerves begin to recognize blurred connection 

to the self—to the song. And my hand finds rest 
like a heavenly dream against the soft hollow of your chest. 
The collision of cadence. The melody’s home.

Nursing home. Humor.

This evening, I apologized for my lame joke.
He said, "Honey, you're not lame. I am."

I gave him a t-shirt for Father's Day that reads:
"Trophy Husband."
It's his new favorite shirt.

When I say "I'm home," I mean I've come to hang out 
in the bed next to him 
for however many hours of the day I can.

Funny how love translates 
gypsy life.

Wednesday, July 1, 2015

Evening snapshot

I am sunburnt, candy cane striped from afternoon beach combing without a single cloud overhead. This is the summer we will blame for my future skin cancer. 

B— is making noises in his sleep that are hard to explain. He snores if his head is propped, makes chittering jibberish when I remove one of his pillows. He "swam" in a tide pool today. He thinks he's king of the world; I do too. Before he fell asleep he thanked me for the hundredth time for bringing him here. He says he's so used to this place he doesn't miss home.

L— is wide awake. I can hear the fold out sofa creak beneath her insomnia. She pointed out the convergence of Jupiter and Venus in the sky above the sunset this evening. We walked the length of beach taking photographs in front of the surf until the light ebbed and she begged cold at 9:30 p.m.

M— finally said goodnight to her boyfriend and logged off of Skype 20 minutes ago. She's given over to the melatonin. We probably won't rouse her until 3 p.m. tomorrow.

E— hasn't called. I trust he's alright or I would have heard otherwise. I miss him.

I miss my husband too, although we chatted for at least an hour, face-time via Facebook messenger. I miss having him at home in our bed. I miss when he could hold me in both arms. I miss being able to think that maybe someday we would walk along a beach somewhere, anywhere, hand in hand.