terminal illness of family member/spouse

My Life as a House


The quaintly cliché notion that surrounds terminal illness has no better friend than fiction.

I suppose if one has never watched another die than the idea that fleeting finality will coalesce into heartwarming relationship building that shores the foundations of love so that it may bear the separation and even jump-start positive growth experiences is comforting. As it is meant to be. But it’s not real.

Rob and I watched Kevin Kline’s 2001 film entitled Life as a House last evening. Of course, Kline’s character is dying. Naturally he is estranged from his child, ex-wife and living life in general prior to receiving his personal wake up call. And as most dying people do, he decides to demo the shack he lives in – interestingly situated on prime California ocean front property – to build a new home to leave to his sixteen year old son.

Although, the house is the least of what Kline’s character hopes to leave behind, a loft full of death-fueled ambition propels this man.

And it’s predictable. Epiphanies pop like flower buds in the morning sun after a night’s rain. Good is rewarded and annoying folk awarded their comeuppance.

Kline’s character dies more convincingly than 99.9% of the screen deaths I have seen. Having stood bedside myself, I am morbidly critical of fake death. His last moments struck truth. Not that I care all that much to see accurate death-bed scenes, but I hate it when they are prettied up.

Admittedly, given Rob’s recent heart attack, Dee’s birthday with all its memories, and it being the season of “anniversaries”*, we probably should’ve watched that horrid Vince Vaughan tripe holiday throwaway I found the last time we were at the book mobile.

But we are fond of Kline. He’s also worth watching. Vince? Not so much.

What’s stuck with me today though is  the lessons thing. That when someone becomes so ill that death is inevitable, those around learn something from that person’s grace under pressure example. Dying people are seen as sages and their loved ones gather at their feet like disciples at the Last Supper.

It’s not like that. Love is more often left hanging on whatever peg it was carelessly allowed to dangle on and recalcitrant children opt to revert even further to the typecasting of their younger selves. Neighbors more often decide to scuttle like roaches than step up and words are left unsaid that need to be spoken and shouted that should be swallowed.

The whole stoic saint persona was/continues to be the most difficult for me.

Rob’s recent brush with acute illness sharply reminded me that I function better in long seige conditions and not in the initial skirmishes when the enemy’s unknown and the terrain is new.

But I did like the house analogy. Death is a metaphor’s goldmine. To me it makes total sense that the old is razed and the new is rebuilt atop. Phoenix from ash. Apt.

I dream a lot about houses. They are never finished and I am usually in transit from one to another. They are always in the college town of long ago, which symbolically makes no sense aside from the education aspect.

I wonder sometimes what it will mean if I should ever dream that I am in a finished house. Of course, I will have to actually live in one first as I need a template.

Three houses passed university and not one ever “done”. Now there is a better analogy for my life.

Best line – “Change can be so slow that you don’t know if your life is better or worse until it is.” That, thank goodness, is not one of my analogies.

*I think the whole anniversary of deaths, non-birthdays, non-wedding anniversaries and – worst of all, in my own opinion – the idea that events leading up to deaths should be observed in any way are products of a society lulled into the false belief that death is the trauma that keeps on refueling. And that ‘s it better to acknowledge and acquiecse to it than simply acknowledge and get back to daily life. I read accounts of people who literally lose weeks to gearing up and ramping down. If I took time out to do more than simply recall that “oh yeah, that happened today”, I would never get up off the floor in the corner I was curled up in. I’d be like that old SNL skit. “Yes, the late Mr. Loomis used to lay in a basket by the door. He had no spine, you know. God rest his soul.”  If grief is a 12 step process, and I suspect strongly that it isn’t, it’s not productive to recycle it yearly. No good can come out of  that kind of hindsight flogging.

Unavoidable


So I dipped a toe into the topic of the avoidable, but didn’t delve into the flip-side, did I?

The young woman isn’t identified in the photo credits. Perhaps the photographer, Chip Somodevilla/Getty Images didn’t ask. It would take a ballsy person to stroll up to such a scene and play 20 questions though I imagine he’d have gotten chapter verse and the annotated notes if he had.The grave belongs to U.S. Marine Corps Lance Corporal Noah Pier. He was killed February 12, 2010 in Marja, Afghanistan and is resting at Arlington National Cemetery in Virginia, which is just outside the capital.

I’ve been there. It’s beautiful, belies its purpose and history. Arlington was the plantation home of Robert E. Lee’s wife. They abandoned it when he turned down Lincoln’s offer to head the Union Army, resigned his commission and went to serve the Confederacy. The mansion was built by George Washington’s grandson and the father of Lee’s wife, Anna.

The house was commandeered and used as a garrison and it was Union General Mieg’s idea to start burying dead soldiers there, partly as a rebuke to Lee. Mieg’s own son was among the first war dead interred there.

I wonder. Did he sleep on the left side of their bed? Is this the first restful nap she’s had in months? Were they married? Engaged?

Not that any of that matters but I bet she’d have told Chip if he asked.

I found the picture in my blog reader and then just after I found a post about John Cazale, the actor. You’d know him if you saw him. He only made five movies before he died of bone cancer in 1978, but all five were nominated for best picture at the Academy Awards, and he is cited by folks like Pacino, De Niro and Streep as being one of their great influences.

But that’s not why I found him interesting or mention him now.

Meryl Streep and John Cazale were engaged to be married when he died. She nursed him throughout his illness. She even took a minor part in The Deer Hunter, just to be with him and take care of him as he went about making his last movie.

She was with him when he died.

And then six months later, she was married.

Some people would find that shocking. Judge her even.

Yet, she’s been married for 31 years and has four children and by all accounts is very content, happy even.

She helped put together a documentary about Cazale and agreed to be interviewed. She is puffy-eyed and tearful at turns on the screen as she talks about him.

And yet …

I wonder about Noah Pier and this girl. On this most recent Memorial Day she is napping on his still fairly fresh grave, but where will she be mid-summer? Or fall? Or next year?

Losing people we love isn’t anymore avoidable than someday being “lost” ourselves. But it isn’t the end … of anything really.

Sunday Morning with Rob and Me


Sundays are lazy. None of that scrambling to your choice of worship theatres for us. Late rising, leisurely breakfast – never empty tea cups and conversation defines the morning for Rob and me.

As we usually do, we share information gleaned over the last several days that hadn’t already been featured as a topic of interest in our conversations. We are news junkies. I mostly Internet and he a combination of the web and talk radio.

Today I brought up a Business Week article by Amanda Bennett where she details the financial end of her husband’s seven-year battle with kidney cancer. It cost $618, 616 to prolong his life with 2/3rds of that expense settling in the last 24 months – when virtually everything that took place, did nothing.

Two things struck me about Bennett’s quite well-written article:

1) She admits that she was unaware of the true cost of her husband’s illness in terms of dollars because their insurance coverage really only presented them with bills for co-pays. It made it seem like a bargain when looking only at their out-of-pocket.

2) Even knowing that the last leg of her husband’s illness – in terms of treatments tried – was a waste of time that probably diminished his quality of life – she wouldn’t change a thing if she could do it again.

Oh, and just as an aside, she writes about dumping an opened bottle of one of the potent cancer drugs he was taking down the bathroom drain after he died. WTF?? Seriously? So wrong. Where was hospice? Obviously not doing their job.

Rob and I come to the terminal illness things from different perspectives – kinda. His wife was able to make her own decisions whereas my husband was mentally incapacitated and all decision-making fell on me. There was a tiny glimmer of hope for Shelley. Will never had a chance regardless.

So Rob can play devil’s advocate to my hard-earned position on illnesses that are inevitably terminal. What do I think is terminal? Anything where the odds are fifty-fifty or worse. North American mindset dictates fight no matter what it costs in terms of money and the emotional well-being of your loved ones, but I think you have to take into account the long-term toll. If you love your spouse and kids, how can you do otherwise?

Of course, I am of the belief that death is not evil, unfair and frightening – which is how it is regarded in the West. Death is. Like life is. I exist in either mode though I am beginning to wonder about what constitutes life really. If I always exist then am I not technically always alive albeit sometimes not corporeally?

Rob and I have some heavy Sunday morning brekkie discussions.

He doesn’t like to show his cards much on this. Shelley fought tooth and nail in the face of extremely bleak odds. A realistic person might say that she never stood a chance at all really. I would not want to say that perhaps her time would have been better spent traveling the world with her husband and girls and making the most of what was left. There is/should be choice.

Will wanted to fight. He didn’t understand that there was nothing to fight with. The only option – bone marrow transplant – would have just killed him sooner or left him as mentally/physically ravaged as he was just before he died.

I was selfish in the eyes of his family and friends because I looked closely at the odds and the long-term and decided that sacrificing the present and the future wasn’t the best option for Dee and I. Will would die no matter what. What was left for me to decide was how much physical hell I would let the medical profession put him through and how much of my life and Dee’s life I was willing to trash in the process. I decided – not much. The whole thing was lose-lose and it was up to me to minimize damage as much as possible.

Had we discovered his illnesses even a year earlier, Will would have decided otherwise. He’d have opted to risk the early death and even the mental and physical disabilities to stay alive. To be with me. To be at least sort of around for Dee. The fact that this would have strained me – even more because he would still be alive and in my care as I type this – wouldn’t have mattered to anyone but me. Wedding vows have hidden consequences.

But it would have been his decision. I wouldn’t have influenced him even if I knew the cost in full.

“I hope, ” I told Rob, “that if I were to ever be in a place where death was mostly likely that I would base my decision on what to do next on what would be best in the long-term for you and the girls.”

I don’t know if I am that strong at present, but I am working on it.