Thursday, December 31, 2015

Farewell to the last forty

Twenty-two years ago, a grizzled, Jewish WWII veteran wearing a terrycloth robe, beret, and bed slippers smoked cigarettes with me on the balcony of the Northridge VA Hospital in Los Angeles. He spoke to me in a rich Brooklyn accent and said, "Life is a biblical journey. All you need is a destination and forty years to get there."

I was forty for two years.

In retrospect I realize that the phenomenon, completely my own doing, was an awkward mistake. But it did happen. I went straight from age thirty-eight to telling everyone that I was forty, because as far as I was concerned thirty-nine was a dreadful age to be. I didn't relish the idea of a year spent worrying about turning the big Four-Oh. In 2014, if someone asked, I told them I was forty. And then, on the last day of that year, I in fact turned forty. Rather than continuing to skip my actual age for the next annum I spent 2015 telling the truth.

My kids forgot. My husband forgot. And I missed out on thirty-nine, which any more doesn't seem like such a rough age. 

I took a final forty-year-old selfie yesterday afternoon that some might believe encapsulates arrival after years of wilderness wandering. My husband tells me that rather than failing to achieve or to reach a clearly defined destination, my life is littered with evidence of my priorities and sizable triumphs along the way. 

Today I am finally forty-one.

A few days ago, I took my oldest son on a midnight drive out to Utah Lake. We talked about choosing a path in life, orienting on becoming. I told him if he comes to a place where he decides there is need to change goals, rerouting his course and throwing himself headlong into the work of progress is completely acceptable. My son used to ask me, sometimes with frustration what I "did", probably because I've decided on a dozen course changes since his birth. For a long time I sense he was ashamed that I wasn't like other moms. I didn't exactly stay home, and I didn't exactly work full-time. My jobs and projects have shifted over the last twenty years around my chosen focus—childrearing—which is completely obvious to me now even if it wasn't while I was midcourse. And perhaps, during that time, it seemed to my son that I did nothing. But as he enters adulthood and we look back together, the evaluation is rich with inclusions and activities that have shaped my kids as much as they have me. Those years are an accumulation of music, theatre and visual arts, dance, poetry, philosophy, hiking, photography, volunteering, teaching and mentoring, editing, entertaining, spirituality, friendships, and continued growth and learning in every imaginable discipline. 

No, my life is not without mistakes. Many of them. But even those can be mined for wisdom and insight. Openly accepting responsibility for my faults has taught my kids to feel safe being human; that there is no shame in admitting blunders. Mistakes can help refine the angles in our course correction, and give shape to character. If anything, (you read it here) I am a character. I am as proud of my bruises as I am the muscle I've built. And so,  I encouraged my son to embrace the bravery necessary to begin becoming. In doing so I acknowledge for the first time that in these past forty years—plus one—that I've afforded myself the opportunity to get messy trying everything I wanted to put my hands to.

And it's not as though I've come to the conclusion of this life experiment just because the texture of all this becoming is finally producing a patterned cloth. There are at least a dozen more course changes to come. I'm not so young anymore not to recognize that this animal is set in her ways. Let's check in again and take stock in another thirty-nine. We'll call that our final destination.

Tuesday, December 29, 2015

Notes at the end of raising a son

I have two grown children.

I feel like someone else must have typed that sentence. I'm filled with strangeness and questions.

Where has it all gone? Where is the boy child who nursed so long at my breast? Where is the little one who used to fall asleep facing me each night with a tiny hand pressed to either of my cheeks? Where is that scoundrel child who at barely two years of age unlocked a garden gate, crawled beneath barbed-wire fences, and crossed a pasture with horses looming over him in order to jump on the neighbor's trampoline? Where is my three-year-old so distressed by the change in his parent's marriage that he ran away and hid beneath the computers in the public library when my back was turned so that I spent half an hour frantic that I'd lost him? What happened to the darling bespectacled boy who was delighted by dinosaurs and all things Tolkien at four? Did he even go to kindergarten? I forget. And where is the little artist who chalked magnificent evening landscapes at six, and won drawing contests until he decided the competition wasn't for him? Where is my sullen, angry boy, hurt by injustice and turbulence at seven, eight, and nine, who prayed for a brother each night? What happened to the child who felt the world through the eyes of a frightened animal, so that he couldn't eat meat beyond his tenth birthday? How many dance steps for freedom and joy in those eleven and twelve-year-old feet? Wherein were the emerging gymnastic spring and natural head over heel spin? Why in my memory can I only barely recall the years he fumbled with clarinet and finally took up the skateboard? How now the images he pens? From what source does his music now rise, the insight in his thoughts, and the moments his tempestuous spirit finds occasioned calm? From where his maturity, his willing service and kindness? 

I've lost the years we spent searching for snowy geese in the Snake River wetlands and owls in the forests of Targhee. I'm missing the nights I spent holding him to my heart to hush the over-active imagination fueling his terror-filled dreams. I can't remember the last time I cradled him as less than anything fully grown against my neck. 

The Lord has given me a Man.

Saturday, December 26, 2015

Staring contest

Sometimes you can't deny 
the happiness staring back at you.
Sure, life's hard, and it's nothing 
like you imagined it would be.
But it's really not so bad.
And it's alright to be good at living a hard life well,
or at least well enough.

Monday, December 21, 2015

Silent night

Over the last eight months I've noticed similarities in behavioral quirks between Mr. PNU and my youngest son, B—. Autistic spectrum disorder sometimes lacks interpersonal interface. My husband's brain damage often produces the same disconnect. 

Where we used to communicate with no breach, there are now chasms. Where he used to have impulse filter, there is now only enthusiastic lack of inhibition. Sometimes our interactions are less the sort one would expect between spousal peers, are more like exchanges between a parent and a toddler. One of the biggest challenges poised by this new life is that I am trying my hardest to respect my husband's autonomy, while he has lost the ability to organize his desires into the context of his near complete dependence on me. 

Sometimes I get swallowed up in the demands of fulfilling his wants, and the individual that I am begins to dissolve and disappear. The hardest part of this emotionally is that so many people want Mark to live a "normal" life. They want to see him achieve his goals. They want to see him overcome his trials and limitations. But very few people seem to understand that I am being sacrificed in order to make these things happen. 

Mr. PNU wants time to read his entire library. I have no time to read. Mr. PNU wants to return to teaching. I find I must discontinue my education to meet the demands of his return home. Mr. PNU wants to write and publish articles. I am stealing a few moments while he's in physical therapy to write for the first time in weeks. 

I'm asked frequently if I'm taking time for myself, but I'm uncertain where that time is supposed to come from, and no one offers to help to give me extra hours.

I grow weary of hearing people claim that everything he's able to do now is because of miracles. Such statements erase my efforts and ignore that I am dissolving in order to support the illusion of divine intervention. And to be perfectly honest, he's still completely dependent on me regardless of the miracle of slow but sure progress he makes each week. We're still locked in the odds. Nobody's triumphed. And praising be I think absolves people on the outside from the responsibility of supporting and crediting me to get done what they cheer about. 

All this aside, I woke this morning very happy to be married to my husband. He loves me more than I've ever felt loved. He is patient with my lack of sufficient energy to bring about his every hope for every day. He wants to communicate with me, even when he doesn't, or when he can't. Even within his limitations, his kindness and determination give me the encouragement to keep going. But he is changed. He is not the man I married. And my burden is heavy, and the sorrow and loneliness is sometimes deep.

Monday, December 7, 2015

When zero equals everything else

Urology lab work came in this morning. 

Mr. PNU has testicular failure. We're not having any kids of our own. I'm sad, and I'm calling fair, fair. If my husband can't realize his dreams of providing, why should I have my dream of being a mother again?

So today, I'm thankful for the indemnity clause in A Proclamation to the World:

"Disability, death, or other circumstances may necessitate individual adaptation."

And once that's included, the PW simply instructs Mormons not to be jerks, and to take good care of one another. That leaves plenty of room for everyone to put in hard work. Now, I'm going to sit here quietly in the family waiting room at Neuroworx and ponder on the possibilities this opens that I haven't yet given enough thought.

Sunday, December 6, 2015

Light gives light

Mr. PNU turns 48 this week. On Tuesday.

We lit menorah this evening for the first time, commemorating a year of wonder, and hardship, and the room both make for miracles. 

Tomorrow we meet with our second surgeon for a cholecystectomy pre-op. Our neurologist insisted we have the procedure done in town where my husband's neuro team is located, which required that we switch surgeons. She's also insisted that we see a hematologist before she'll give clearance. As of this evening that means we have to push the operation back into January since the hematologist had no openings prior to the middle of next month. I'm trying to stay cool about the implications of dealing with surgery at the same time I'm beginning a new semester. Of course I'll hit the phone first thing in the morning to try and keep our December 14th operation date, but I'm just one woman and the team of doctors I must coordinate to pull the procedure off at a convenient date is a half dozen. 

Our latest development is in my husband's endocrine system. 

After his grand mal seizure, the neurologist noticed nodules on Mr. PNU's thyroid and ordered an ultrasound to confirm. There are four, just large enough that she said she'd like to keep an eye on them and repeat imaging in six months. That was early in October. We put the matter aside until a couple of weeks ago when my husband's urologist called. He discovered elevated prolactin levels in Mr. PNU's blood and zero sperm in his semen analysis. We were referred to an endocrinologist, who followed up with another set of blood tests to evaluate for a pituitary tumor called prolactinoma, and urged us to piggyback a biopsy of the thyroid nodules with Mr. PNU's cholecystectomy. For reasons mentioned, that biopsy may happen later than we'd like. But in the meantime, our urologist laid out the possible causes for both the elevated prolactin levels and the lack of sperm, or azoospermia. There are three possible explanations. 

(1) The seizure prompted a release of prolactin, as epileptic seizures do.
(2) A prolactinoma is causing high levels of prolactin production that is inhibiting sperm production.
(3) My husband is in early stages of premature testicular failure.

Neither of these options precludes either of the other possibilities. And so we could be looking at a whole mess of further issues. Number one does not solve the problem of the nodules. Number two is treatable, but no one wants cancer. Number three is something we'd just have to accept as the end of our hope of having children together. Bottom line, my husband is in the middle of a physical mess and the end is nowhere in sight. But he is going to make it to his 48th birthday, which is a miracle unto itself. Otherwise, this love of living in the tension has its limits, and I'm struggling for surrender, but mostly I'm just tired. 

Birthday wishes are welcome. We need a few more miracles. There are seven more candles to light.