Monday, August 31, 2015

Asking for help for Lily

My LDS ward is being hit hard. 

We've recently lost one of our ward family to pancreatic cancer. Another member has lung cancer. The husband of one of my best friends here went through chemo for colon cancer and after months and months of treatment just came through a clean colonoscopy. I have another friend here who is slowly losing her body to Parkinson's. 

And while I sent out requests for continued support for Mr. PNU's therapy tonight, a young mother of two is facing her husband's testicular cancer. He's already had a radical orchiectomy, and tomorrow he begins the first of four aggressive rounds of chemo. Like me, Lily had to go through some hell to find her husband. Now she's terrified at the prospect of losing him. I ache for her.

So I'm not asking for help for myself, tonight. I'm asking for help for my friend, Lily.

Please donate if you can. 

Saturday, August 29, 2015

In answer to the hard questions

An acquaintance asked me yesterday if the stroke has fed my writing or if it drains the reserve. I told him I have more material for memoir than I ever wanted. As for the act of writing, I think about it frequently, and sometimes I jot a few lines before I fall asleep from exhaustion each night. Today, I opened my blog just after 9 a.m. Perhaps I'll get this post up before I leave to take my husband to the temple.

I'm a week into Fall 2015 at the University of Humble Pie, taking a single three-credit class in academic writing, toying with what must necessarily be done to make up the three remaining uncompleted courses from spring, and sitting in on a religious philosophy course with Mr. PNU as guests of his colleague, Dr. Brian Birch. On Fridays I also help my husband attend a behavioral science think tank hosted by Dr. Matthew Draper. Somewhere in all of this I have three children at home; B— in fourth grade, L— in her first year of high school, and E— working part-time at a downtown sandwich shop while he prepares for college. My oldest daughter, M—, is living with her boyfriend's family on the upper east bench across town, struggling to figure out the world of adulthood and a sixteen-credit load in academia. I worry about her constantly. Mr. PNU's daughter, C—, is working full time at a movie theater, and continues to live with her mother. She rarely comes to visit anymore. 

Our finances are worse than I've ever known. The LDS Church is helping a great deal and I am grateful. But still, we owe several thousand in debts which cannot be forgiven, and for which there is no money for repayment. I'm hopeful Mr. PNU's school loans can be discharged; the necessary paperwork is on my to-do list. The trust holding donations meant for my husband's therapy is about to dry up. He puts in two to three hours in the physical therapy gym each day. It costs $45 for each fifteen minutes. July cost us just over $9000. I enrolled him in a non-profit physical therapy program specializing in paralysis recovery located 30 miles north of our home. We have two-hour sessions twice a week priced at $80 a visit. I traded in my little Mazda for a Kia Soul with a $6,000 downpayment from the trust. This facilitates Mr. PNU's transportation to and from the nursing home. 

In the last three weeks we've become skilled at transfers from bed to wheelchair, from wheelchair to the car, from wheelchair to toilet, and so on. These make possible our extended outings from the skilled nursing facility. Extended outings help to combat Mr. PNU's deep depression. 

The same acquaintance who asked about how the stroke affects my writing also said it's hard for him to tell who takes the bigger blow from a stroke; the survivor or the spouse. I told him I refuse to think about it that way. While my husband is the victim of stroke, we are both survivors and similarly both on the recovery road. It's a team effort. As soon as one of us thinks selfishly about the weight required to move through the journey, we lose the joint cadence which supports the balance of the load. 

I do think about it, however. When faced with managing his continued therapy, his thick depression, and our monetary shortage, I wonder if I am capable of the work it will take to bring him home where I know he will be happier. Living under the same roof might lessen the constant geographic struggle of my responsibilities, but it would mean uprooting again, moving to wheelchair accessible housing, relearning routine, and another set of unsettled circumstances under tremendous workload. 

A couple of days ago I told my husband how grateful I am that I've combatted affective disorder for so many years. If I didn't understand the give and take in regular fight for balance, this challenge might have knocked my feet from beneath me months ago. There is endless need to accept grace. I try to teach each of my children that when problems arise we must give all we can in a day. When office doors close on our efforts, and telephone operators stop answering before a day is through, we must necessarily close our own windows of anxiety and call the work enough. There is so much uncertainty at sundown. Rest and forgiveness of self are crucial. A daily Sabbath.

The weeks fly by. Nineteen of them now.

I lay in bed with my prayers at night; both pleading and angry. I demand much of God, and as I look behind us at the trail we are cutting I see these prayers are heard, but that realization only comes with retrospect. My husband begs simply to feel comfort. I don't know what portion he gets. Ahead there is just enough light to continue wandering this uncleared path. And so I go, pushing a wheelchair into the next day, grateful it has a passenger, grateful he hasn't given up either.

And sometimes, when morning breaks and I can see a few more steps ahead, whether I have anything worthy to say, I take a few minutes to write. 

Thursday, August 20, 2015

Tender Marcies

Mr. PNU has been counting his blessings, every night for the last week. I keep them in a journal file that because of a typo we call "Tender Marcies." Gratitude leaves little room for depression, is the idea behind the practice. I believe it's working. And because today has put me through the wringer, let me share some of my Marcies with you.

Saturday, August 15, 2015


O, Father of all these curious feet,
of all the motherless ones—
I am the asking sort of woman.

Make peace with my poor spirit,
and my thoughts, wandering this thirsty maze
in search of lullabies and forgotten lines.

How I limp along in looking,
reaching out to receive my portion,
only to return the gift in awkward poses. 

How I hunger for the shaping sounds 
I want to recall from heavenly cradles 
and kitchens gone mute.

How I long to dance away from 
asthmatic centuries of feminine lostness 
in your house of mirrors. 

Be merciful to my pure and wounded heart,
to these mournful wondering thoughts.
Take up this veil and let me see

the doors to all these keys.
Sculpt my meek mouth in spirited language, 
and, Lord, bid me sing the Mother’s psalm.

Hand and Glove

At five years old, I told 
the neighbor kids my beloved 
gloves were a personal gift, 

each finger yarn-faced, stitched
by my Heavenly Mother, herself.
Told my friends She’d fashioned them 

to fit my hands folded snuggly and tight 
in time for winter. No one believed 
the story. I lost the first glove 

before spring, and kept the other 
until my index wiggled bare, 
through the hole at the tip. I gave up 

those faces made for me, forgot my gift 
and the self-spun yarn I’d believed.
I grew into something I suppose 

is a woman. Who can tell? And Oh!
I have been so cold the many seasons since 
I misplaced my beloved holy glove.

Wednesday, August 12, 2015

Broken wings

I'm due back at the nursing home in ten minutes. The in and out routine today has been emotionally taxing. My husband is getting sucked deeper and deeper into the murky self-talk of his mind. I ask him to live outside himself, in the present, but I'm not certain he's always capable. His depression ebbs and flows. For a week I felt it was lifting, but after last evening and tonight, I'm not so sure. He is spending more and more time in silence when I am with him, and I have no idea how to pry him open and to shine the light on his darker thoughts. 

His doctor has raised his anti-depressants. I am guiding him through cardiovascular activity aside from his physical therapy. We got out for lunch, to the temple, to the movies. But he rarely perks up for more than a rare twenty minutes here and there. Today, although he insists that the three hours we spent out of the facility improved his mood, he's been almost completely shelled off.

I feel helpless to do anything for him.

I came home for an hour's rest between the movie and our evening nursing home bedtime routine, to breathe some courage into my heart before the last hour of our day together. In the grass, I spotted this dragonfly, trapped and torn. I picked it up, told it how beautiful it was, and how sad I am for whatever happened to it. The thing tried to fly, but could only go a few feet, and even then only in clockwise circles a foot off the ground. I followed it until it collapsed on the pavement from exhaustion, and then I scooped it up again. 

It may seem silly, but I cried for this dragonfly before I placed it gently in a bowl in my kitchen, lay a cotton ball soaked in isopropyl alcohol next to its abdomen, and covered the bowl with a layer of airtight plastic wrap. It didn't struggle, breathed hard for a few moments, and then went very still.

Monday, August 10, 2015

Side effects

Because this blog is as much about my daily experience with a mood disorder as it is about anything else in my life, I'm going to write about medication today.

My husband and I made the decision for me to go off my meds last October. 

I'd taken Lithium for nine years, to pretty good success; no full-blown manias in all that time. But we decided that in trying to have a child we'd see how I did without due to possible heart defects in fetuses exposed to the drug in the first trimester. We tried another new mood stabilizing medication, Latuda, for a couple of weeks, which so far shows no effect on the developing fetus in clinical studies, but I developed nasty leg cramps and my doctor took me off the drug immediately. We decided then to approach managing symptoms with exercise and diet rather than relying on pharmaceuticals. And surprisingly, it went well. I won't deny that I experience minor fluctuations in mood outside of the affective norm. My husband noticed the change in my relative mood levels, but he assured me that they weren't anything that required more than patience on his part; they weren't at a clinical level of disruption to our daily lives.

In the six months that my husband and I lived together, I started sorting through my affective background, piecing together triggers and aligning substance use (both prescribed and illicit) with my mood history. What I discovered was nothing short of alarming. There is a one-for-one correlation between medication/drug use and each of my manic episodes, be it my first psychotic episode in conjunction with Ritalin in childhood, to my last manic episode and a standing prescription for Celexa, an anti-depressant. (Anti-depressants are known to trigger mood instability in those individuals with bipolar related diagnosis.) At any time in my life that I've sustained tolerable affective levels I was living free from stimulant substances and medications and participating in regular physical activity. I've since shared this information with my therapist and psychiatrist. Both agree that rather than Bipolar I, I may experience affective turbulence induced by related stimulant medication and/or substances. No one questions whether or not I'm cyclothymic. But the treatments for cyclothymia do not necessarily require the level of medication as cousins Bipolar I and II. 

And then the stoke hit.

I checked in with my psychiatrist within the first three weeks and told him I'd like to resume Lithium; just in case. At first, all seemed well. Then I noticed that my anxiety levels had risen significantly, and I was using Ativan more and more regularly to counteract my anxious disturbance. After two weeks I gave up. The side effects created enough of a problem that I found myself unable to focus my energies on maintaining vigil at the hospital and helping my children remain grounded and secure at home.

Several weeks passed and my regular appointment with my psychiatrist came round again. I explained what had happened and that my moods were still within the manageable range, but I requested once more—just in case—that I begin Lamictal, a mood stabilizer I was prescribed for the three years prior to taking Lithium.

That was two weeks ago. I started off small with a 25 mg ration that I was instructed to increase by double, two weeks at a time, until I reached a dose of 200 mgs. Five days ago I began noticing head and neck tension. These lead to headaches that I dealt with through the weekend. My muscles have grown steadily tighter, my joints aching. This morning, after an adequate night's rest, I woke nearly unable to walk, limping because of my hip pain.

So I checked Lamictal's side effects. Sure enough. I think I'm having another bad reaction; one that like Latuda could result in an incurable condition, tardive dyskinesia.

About a week or two before my husband woke with a clot in his carotid artery, he gave me a priesthood blessing wherein he told me to rely on Christ and on God for healing; that their love would provide greater stability than any medication ever could. I'm looking back, wondering if I remember those words for a reason, because I recall so little else from the blessing's pronouncement. I'm discouraged that presently I don't seem to have reliable options for pharmaceutical treatment of my affective disorder that don't potentially pose life threatening side effects. I'm left with talk therapy and the support of friends and family in order to maintain. These have proven enough for ten months. I hope my husband's blessing was correct, because continuing the Lamictal doesn't seem to be a feasible option.

Sunday, August 9, 2015

70 years later

Elegy to a Shrine


SannĊ torii stands
like a single crane caught 
in late morning,
reflected on the water—
one leg firm in good fortune,
the other holding longevity 
like the smooth edge of an obi
folded under against its soft feathered belly.


In the last breath of summer 
and the ascending light of fall,
the sun reposes midpath,
suspended in its journey. 
Like steam rising over pots of miso and rice,
the gravity of early shadow cuts scattered shapes 
from the camphor-scented leaves
still crisp in the throat.
The sky tangles itself in something sacred,
something profane—
an orb paused on the warpath 
before plummeting from the high plain of heaven.


In these moments of perfect grace— 
deep knee bends
and bicycle tires on some spiritual pavement
—the great bird soars like a pillar
as if over an Earth not yet hot to the touch.
Something like a god.
Something like a reed cut at the root.
And this day sinks into silence,
into the heavy camphor in the heat that is not air,
into so many accumulations of ringing bells:
the beating of wings,
the burning paper in broad autumn light,
a punctuated morning.

*previously published in The Day After/Peace Provocation Witness, Art Access/Utah Campaign to Abolish Nuclear Weapons