THE LIFE-STEALER

My sister-in-law Nancy was one of those spark-plugs:  vibrant, upbeat…grass didn’t grow.  You know.  For years she chaired an annual event to fund a large senior center, she rollerbladed several times a week around one of the Minneapolis lakes, had two kids and managed to work.

Whenever I think of Nancy in those days, I think of this spunky brunette, maybe five-foot-two, in bermuda shorts and tennis shoes, with her car keys in hand ready to shoot off to the next errand.  "Okay, guys, let's go." Her mantra .

Then eighteen years ago, it hit.  This slow, devious disease of Multiple Sclerosis (MS). It stops people from moving by interrupting the flow of information between the brain and the body.

For Nancy, it began with temporary loss of vision in one eye which occurred again a couple years later.  She was still able to work, keep up many of her activities and even drive.  Her children were then 8 and 11. 

But the disease progressed, producing difficulty with movement, then balance.  And slowly her mobility, and with it, her independence, ebbed away.

For Nancy's 50th birthday, her daughter came home from college.  “Get in the car,” Nancy told her.  “We're going somewhere.”  Despite Sari's pleadings, her mother wouldn’t tell her where they were headed.  When my brother pulled up an hour and a half later at a tiny rural airstrip, Sari understood.  "NO! WE'RE NOT GOING SKYDIVING!" she yelped. 

SkydivingBut sure enough.  That was what Nancy chose to do for her 50th birthday.  And she did. She made that dive (with an instructor, thank God.)  Even I , though relatively able-bodied, wouldn't have done that. And she even pursuaded Sari to do it with her.  My brother calls this a testament to her passion for life and her resistance to being beaten down.

But even those days are gone. Today, she uses a walker, and her vision is impaired.  She tires easily and requires assistance several days a week. She speak slowly, sometimes grasping for words (who doesn’t), but her mind is sharp, and she remembers things I have long forgotten.  And she knows only too well what she now cannot do.

She and my brother moved out of their beautiful home a couple of years ago into a condo that he specifically designed to meet her present and future needs.  Yet a few months ago she fell against a counter and broke several bones in her nose. You try, but you can’t control every minute.Fundraising Cousins Dannon and Marli

And so we walked.  In May , for the annual National Walk MS.  I went to Minneapolis  to take part.  Nancy’s son, my nephew Dannon, raised the largest amount of money for the MS Walk in the Twin Cities of Minneapolis and St. Paul:  more than $17,000.  My daughter, Marli , also came in town from Tulsa, OK, where she is doing a year-long Federal Court clerkship.  She raised over $1000 online.  

We were joined by her elderly parents and it touched my heart to see them having to support their daughter in her wheelchair.  Also on hand were her sister, cousins and about 40 others for Team Nancy, and hundreds more who walked for MS beneath threatening skies by the historic Minnehaha Falls and along the Mississippi River.  Nationally, the 2012 Walk raised over $50 million to combat the illness.

I haven't been on many of these expeditions, but this one was very well-organized.  Vendors showed up with huge catering trucks dispensing hundreds of sticky buns, donus, fruit, coffee, hot chococate and other treats to the marchers.  There were the ubiquitous booths and tee shirts and balloons, and a general sense of celebration,  trying to rev up spirit for those combatting or having a loved one who's combatting such an odious disease.  The wish is to overcome, to find THE cure. As if our collective wills would make it happen.  But for me there was an underlying sadness about the unpredictiblity of life.  If this disease could cut down my vivacious sister-in-law who among us is safe?

In the couple of hours or so it’s taken me to write this, two people were  diagnosed with MS.  It affects approximately 400,000 Americans .

 My daughter, me, Nancy and my brother BobMS is an auto-immune illness that attacks the central nervous system. It wears away the myelin, the substance that surrounds and protects the nerves.  Symptoms vary greatly from patient to patient and over time,  from numbness and tingling, to blindness and sometimes paralysis.  Though it’s an equal opportunity disease,  more than twice the number of women than men get MS, and it is more common in those with Caucasian European background. Though not hereditary, investigators are researching genetic dispositions.

 There’s  progress with new drugs in research.  Stem cells may provide some answers.  Trials of all these things continue, many financed by these monies raised by the National Multiple Sclerosis Foundation.

But statistics don’t tell about the impact on lives.  A few months ago when my brother and Nancy were visiting me in California, I heard a thud behind me.  I turned to see that Nancy had fallen while silently trying to get from one place to another with her walker.  She was quite complacent about it, saying it happens often.  Even though she’s slight, I couldn’t get her up alone.   By the time I had gotten my brother, she had managed to pull herself onto a chair.  This is spirit.   But it is also what tears your heart out.  

Team Nancy

___________________________________________________________________________________

For more information or to contribute, visit www.nationalmssociety.org. or wwwmsfocus.org

Living in the Bible...

I have been out of commission for several months......here's why.

We bought the house almost 35 years ago.  The canyon setting was lovely, away from the bustle and stress of TV news, but the house wasn't my type, so we decided we'd sell it  in a couple of years.  The next year there was a terrible fire in our canyon.   We were evacuated and many houses fell.  When the flames came to our fence the firemen used our pool water to extinguish it.  I have often thought it was the best use ever made of our pool.  Of course the pool man might argue.

The next year or so I learned a lesson about living in canyons, which I once thought were such bucolic, natural settings. When the hills are denuded of foliage by  fire, a flood naturally occurs. El Nino came along, and with the deluge came the mud.  The waters were so high that a Volkswagen was buried in the street in front of our house.  It made the cover of a national news magazine.  And my two-year-old son, so cute in his little hat, made the ten o'clock news as he stood on the "embankment" (once the curb) pointing at the scene.  And this was paradise?

A few months later I was pregnant with what would be our last child.  We decided the house was too small, but the market no longer supported selling it, so we embarked on an upstairs addition so my older stepchildren could have their own rooms.  The contractor was not very conscientious and neglected to put up plastic barricades.  The debris, combined with bad Santa Ana winds, and I suppose some exhaustion, put me into the hospital with what they called "pregnancy-induced asthma."   I was guest of UCLA Med Center for three months, much of it in the ICU battling for the breath of life.

My in-utero daughter, always one to react quickly to a situation, got out fast.   Six weeks fast.  She was actually discharged from the hospital at five  (healthy) pounds before I was well enough to go home. So after many more months we had a new addition, a new baby and over several years and eight surgeries I had new hips courtesy of all the steroid medication I'd been on for the asthma.

Present day:  Last year, on the day I was leaving for Vietnam, a gnarly old oak tree fell on our house.  Luckily, no person was injured, just the roof.  The insurance company came out, removed the tree and covered the roof.  I came home from Vietnam.  It rained.  The tarps didn't hold, and it poured into the house.  That was May, 2011.  All through the summer we kept calling the insurance rep asking when they would fix the roof and  ceilings.  No reply.  Nada.

Tent CityCome October, a new storm  hit.  This time the damage to the house was major.  We had to tear out the entire kitchen and several other rooms, including  ceilings and floors.   The dampness smelled terrible and there had to be major mold demolition.  Huge plastic sheeting barriers were constructed to protect the rest of our home.  It looked like tent city.

We had to pack up much of the house and move out.  the insurance company is paying for accommodations while they've been arguing about the scope of the roof repair.  For the months they spent debating, they could have paid for the whole project  and saved a lot of our living expenses.  Such stupidity.  Finally, the building inspector told them they had to repair the entire roof up to code. 

We have been waiting for the check.  Meanwhile, we have been living in limbo, with some stuff with us in the apartment, and some still at home. When we have to visit what was once our refuge, our castle, , it looks like a war zone. 

And the whole time I have been unable to write a word.  

The check finally came last weekend, exactly one year after the tree fell.

Hopefully, the roof construction will start.  We might be able to move back in one day. But  we still have to tackle the inside and a kitchen I was not  prepared to build.  Maybe, if we're ever done, I'll finally like the house...thirty some years later.

So Eden has been replaced by fires, floods, illness, more floods...and we even have snakes in our backyard. Luckily there were no animals that had to be brought in or out two- by -two.  But the other day when I was  there surveying my garden I thought the apple trees looked pretty sad, and then I spied.... a grasshopper. Can locusts be far behind?   I said a prayer and got out fast.

 Gutted

A Guitar, a Cigarette, an Old Vietnamese Woman, and a Moment on Fire.

I continue my hibernation after being cast out  by the flood damage to my house.  I am lucky to have again as my guest writer Christopher Daradics, who is on his world-wide vision quest and book-writing expedition.  This piece glimpses Chris in Hoi An, Vietnam, a city I also visited last April.  Our impressions were quite different.  I saw a pleasant  old French colonial seaside town with many souvenirs for sale.  And Chris saw...destiny.  Christopher blogs at weoverhear.com. Enjoy.
 

A Vietnamese flag flies on every machine powered boat in Hoi An's small waterway harbor.  Most of the flags are tattered, usually just along top leeward arm of the yellow star which sits smack dab in the center of the solid red background.  To my eye, the flags are hand made, probably sewn by one of Hoi An's thousands of tailors. The flags are all weathered, stubborn, rugged, and steeped in the simple dignity of their persistence. 

Photo by Heather Stevenson

My boat was under human power, she had no flag, but the same story told by the tattered threads which gave to the holes in the middle of the flags was retold in the lines that gave way to the old woman's mouth, which was puckered around a cigarette. The bright whiteness and rigid sraightness of her cig seemed out of place, but only so in its poking out there in the middle of her dark face, under her dirty and worn out rice paddy hat. It sat directly on her lower gums in the space once occupied by her front teeth.  Otherwise, as she puffed and paddled me from my home on Cam Nam island across the bay into Hoi An's ancient harbor, it was a bright white and magical blue smoke kind of day. 

I was playing my guitar on the promenade a few meters up from the water when she, with the deftness and craft of any Venetian gondolier, paddled up and motioned for me to join her. I bit, zipped Annie back into her case, set her on board, and jumped in. Only after leaving the shore did I see the dead, bloated, and floating golden retriever my chauffeur had pinned to the shore when she swooped in to pick me up. The human powered boats of Hoi An, the flagless ones, like the one I was in, are finely shaped, tightly jointed masterpieces of simplicity and endurance. The exposed wood is grey, but looks like it's pleading for a chance to be purple, or blue. The boats look ancient, sleek, soulful, and are apparently well suited for pinning floating carcasses to the shore.

In that Asian boat, with that Asian woman, and her shrinking cigarette I sat like an Indian from the wild west with my legs crossed in the front of the boat. I unholstered my western guitar, played my western songs, and sang in my western language, with my western broken heart. "Earth Angel, earth angel, would you be mine? My darling dear love you all the time."  I sang to her. I sang to the boat. To the water. To the harbor. To the tourists. And to all the world as we made our passage across the bay toward Hoi An's UNESCO enshrined colonial kitsch gauntlet of French buildings that straddle either side of the waterway, I sang.

My gondolier and I, with her rhythmic and ancient boat-on-water, surged and glided, surged and glided, into the harbor. I strummed and sang. Locals and tourists took notice. With each strum on my guitar and stroke of her paddle our journey became more and more Wes Anderson-esque. The colors were over saturated. The scene's beauty was in its simplicity and peculiarity. The lenses groped us, me and my guitar, the wrinkled old lady and her disappearing cigarette. We were pure spectacle. 

The very moment we drew everyone's attention, the clouds worked in vain to save the French buildings, painted in gold, from catching fire behind the gawkers. The buildings caught fire, the boats caught fire too. Blue and purple won out over gray and the wooden paddle boats began to smolder. The powered boats painted in mariner's blues and Asian reds and yellows, with their fiery Vietnamese flags, burned as well, but they with the inorganic brightness and intensity of phosphorus and magnesium. Everything in sight, a burnt offering to the persistence and benevolence of the sun.

The world ablaze, I played past the molten gold dripping from the walls of the century old French buildings. In slow motion I strummed my chords towards the electrified blues, reds, whites, and yellows of the painted power boats, grooved on past the gawking cameras, sang past the smoldering purple and blue of the unpainted row boats. Everyone watched, and we glided by, me with my guitar, her with her few-puffs-left cigarette.

A hunch has been dogging me this whole trip and the last five minutes of my half hour two dollar slow motion music and fireworks spectacle finally put it into a picture I could get a grip on. Time is an ancient and toothless Vietnamese woman whose wrinkled old lips are wrapped around the bright white cigarette called Christopher. Like the soon to be dead and bloated dog that I am, she has me pinned. I'm clenched against her gums in the space left by teeth that have long since rotted out, and baby she's a puffin, and there ain't nothing I can do about it.  The buildings, the boats, the clouds, the water, the people and their hungry cameras, we're all cigarettes in that old lady's mouth, and baby she's a puffin and there ain't nothing we can do about it, nothing but sit back, sing our tune, enjoy the ride, and hand over our two George Washingtons when our half hour is up.