Switched At Birth

p.s.

I was going to put password protection on while I'm going for this fortnight (probably less, you know me, I can't stay away), but when I did, it felt so unfriendly that it made me lonely right away. Feel free to come on in, relax, sit by the fire, walk in the woods and read good stories to each other whether I'm here or not. Write a guest post if you would like!

Thanks, guys. I've put all you "regulars" onto old-fashioned 3 x 5 index cards. Watch out, now. Ya'll are gonna be hearing from me.

When the cat's away

There is something about a Florida house that doesn't tolerate being empty. You may clean it from top to bottom, winterize it, set the thermostat so the air doesn't get too hot or too cool, and lock it up tighter than Dick's hatband before you go away. It doesn't matter. The house knows you are gone, and it begins to retaliate.

Cockroaches develop an overnight immunity to your exterminator's quarterly spray. They call their friends to party. Mice move into your closet and shred the linings from your nicest old jacket to make a nest for their babies. A toilet develops a leak. It seeps slowly from the bathroom tile to the carpeted hallway and after a week or two a black mold-friendly sump spreads to the walls. Brazen Stephen King-size woods rats may eat through a door, sever lamp cords and phone lines, disabling the alarm system in the process.

If you are gone for two months, you may barely recognize the place when you return.

Blogs are strangely like a house. They are happiest when there is a buzz of activity. Vacant, vandals become bold. Spammers know. I don't know how they know, but they do.

There's an old saying about cockroaches, that what's worst about them isn't what they carry off and steal, but what they fall into and mess up. Cleaning up after spammers is disheartening. I would rather sweep up bugs.

You all know that this is a time in my life when my equilibrium has been upset. My writing life has deepened, but the lovely weather talk of wildflowers, wood's walks and gentle musing that has been the tea and crumpets of this blog feels like a foreign language to me right now. It doesn't mean there isn't happiness or light. There is. It's just that my small boat was blown so far off course suddenly that I find myself in an unfamiliar land. It has mountains, tropical flowers, mysterious clouds, nameless terrors and unexpected angelic visitations. It is compelling. I am becoming a lexicographer, navigator, and time traveler.

I will return to this space, perhaps in that iconic time of new growth, early Spring.

LAGNIAPPE

My best tip for writers of fiction and nonfiction alike:  read Robert Olen Butler's book, From Where You Dream. 

Bluetooth Rocks!

Like most long-married folks, Buck and I have little jokes together. One of ours is that since I can't see and he can't hear, it's a good thing we found each other. Actually, I can see up close okay, but you wouldn't want to be on the same highway with me if I was driving without my glasses. I'm quite near-sighted, plus I have this weird astigmatism that makes it difficult for me to tell which lane oncoming vehicles are in.  Just imagine if you saw a driver lower their window, cover up one eye and inch slowly into the road. . . . yep. Other drivers get out of my way.

Buck's hearing impairment has worsened steadily over the years. He's a scary-good lip reader, but we are always on the look-out for new technologies that will give him bionic ears. He wears high-tech silver and black behind-the-ear digital hearing aids made by Phonac. We have a conference-style phone at home that makes it possible for him to have a comfortable conversation, but cell phones continue to be frustrating. Most cell phones these days are  "hearing aid compatible," but in our experience, that hasn't meant much.

The newest, "bleeding edge," hearing aids can now be bought with built-in Bluetooth capabilities that can enable wearers to connect to cell phones, IPods, televisions, and other wireless devices. Hearing aids are very expensive, however, and so we were hopeful of finding a device to improve Buck's cell phone experience and "bridge" him over for another year or so while the latest greatest technology gets even better. As the huge baby boomer cohort enters the age of diminished natural hearing. . . well, you can assume the problem is going to get solved a lot faster. Suddenly, hearing aids aren't just for Granddad anymore. Plus, these days, almost everyone is wearing something on their ears. Hearing aids come in sexy colors now, too, just like Bluetooth headsets.

Buck's audiologist, Dr. Jennifer Reeves Sylvester, did some research for us. Enter the Artone Bluetooth Loopset, made by Westone. It's a nifty looking black and silver Bluetooth pendant on a black cord that can be worn over or under a person's shirt. It pairs with a cell phone, and the audio goes straight into the hearing aid wearer's ears, in stereo. And, at $167, it's a real bargain.

We were skeptical, but it works! So, today, we went out to Best Buy and bought a Plantronics Voyager Pro headset for me. I've never used a Bluetooth ear piece with my cell phone before. I am surprised how much I like it. Best of all, my voice is delivered via Bluetooth through Buck's hearing aids with perfect clarity. It's exhilarating to whisper to each other into the air and have the endearments arrive clear as pillow talk.

We hung out for awhile at Best Buy looking at gizmos. Now that we have the Bluetooth loopset template, we are looking at all sorts of wireless devices in a new way, with an eye toward using them to extend and enhance quality of life and independence. We even began to "blue sky" ideas for a new, smaller house that is truly a gee-whiz electronic cottage, with acoustics, lighting and computer design tailored to keep us plugged into this remarkable world until the day we matriculate to some other form of energy.

Threshold

Early morning. The sky has begun to lighten, but night birds have not yet finished their song. I slip out of bed and pad cat-like down the hall to my study. It has two windows that open onto the clearing out front. The full moon turned a running deer into a silvery unicorn.

I have been awake for hours, listening to the reassuring evenness of Buck's deep breathing, excited about an image that came to me just as I was falling asleep last night. It is a threshold. 

threshold

/threshold, threshhold/

  • noun 1 a strip of wood or stone forming the bottom of a doorway and crossed on entering a house or room. 2 a level or point at which something would start or cease to happen or come into effect.*

*from The Compact Oxford English dictionary

I can't say more at the moment -- only that this image pertains to writing. It makes me laugh this morning, and think, "What more do I need, an engraved invitation?"

Map

A disembodied array of small yellow lights five across and six down, mounted on a metal framework follow me through a dense fog. Sometimes they are in front of me, sometimes behind. Always too close; always threatening. It was a recurrent nightmare when I a young child. I can't explain how menacing those lights were, only that I woke up drenched in sweat, terrified.

the present moment

Listening Notes:

Carrerras, Domingo and Pavarotti

Abby Newton (Crossing to Scotland)

Books in the Queue:

A Life Worth Living: A Doctor's Reflections on Illness in a High-Tech Era by Robert Martensen (recommended by a writing mentor and friend)

From Where You Dream: the process of writing fiction by Robert Olen Butler

Writing Fiction: a guide to narrative craft by Janet Burroway and Elizabeth Stuckey-French

The Book of Tea by Kakuzo Okakura

The Methodist Hymnal (from our summers in Rice Cove in the Beaverdam Community, Canton, North Carolina)

Heart:

Burdened

Mind:

Walks the great labyrinthine night by the light of a three-quarter moon, accompanied by owls; lays a path of antique carved wood dominoes end to end. Their purloined, forbidden ivory dots flash a holographic image; a map. Words were the way in. Words are the way out.

Bladder Cancer Advocacy Network and The Hero's Quest

Until my brother was diagnosed with bladder cancer late last year, I didn't know much about it. When you set out to learn about this disease, it doesn't take long for you to find the Bladder Cancer Advocacy Network support community. It's an online place where folks can share their own experiences and information. I thought I would probably check it out, read a little, and then move on to other research. But that didn't happen. I stayed. These folks are great. I have learned a lot and been comforted by their kindness. It is much more than an emotional warm blanket or a group hug. The participants share detailed information about treatments, resources, their surgeries, pathology reports and how to interpret them, and much, much more.

There are support groups like this one for other diseases, conditions, transformational life experiences, and just about anything you can think of. Most of them are probably terrific, too. I can only speak of this one: the sense of respect for one another, honesty, and caring is the absolute best in "high tech/high touch."

Click on the badge and you'll find that I've started a journal over there. "Pinewoodswriter" is my totally unsurprising handle!

Steve's options for treatment have widened considerably now, and he has selected Dr. Charles Rosser at the M. D. Anderson Cancer Center in Orlando. (I might note that Dr. Rosser has very kindly selected Steve, too.)  He saw Dr. Rosser for the first time today, and will see him again on February 2 for another cystoscopy. Our brother and one of our sisters were with him today, and that's a big dose of warm fuzzies for me sitting at home on the other side of the state and our other sister out in Phoenix, Arizona.

When I started writing here about Steve's diagnosis, I started a category called "Steve's Cancer Trip." Awkward? Uh huh. I began hearing Joseph Campbell's voice as he described the mythological hero's journey and it occurred to me how many of the experiences Steve has already had and will go through in the weeks and months to come fit into the matrix of the classic hero's quest. And so, you'll see that that  category has now changed to "Steve: hero's quest."

L'Habitation Leclerc - a memory

I began to write this morning at the best possible time, that moment of exquisite balance when nightbirds are still singing outside the window, and a mist of gray-green light has begun to rise from the ground. The house is quiet save for it's own organic sounds; the hums, tones, and sighs of a comfortable lifestyle support system calibrated for its occupants. Refrigerator, central heater, and here, in my study, an old clock. Incense sticks in a far corner waft subtle hints of sandalwood, vanilla, and memories of Le Salon Noir.

Haiti is on the frontal lobes of world consciousness for the moment. Everyone knows why, of course. Bloggers may be more plugged into international zeitgeists than most, but everyone is disturbed by the images and moved by the tragedy, possibly even to the point of making a contribution to relief efforts.  Some have an expertise that will help and they join with others, get on a plane and go. They go. Others, such as my sister, Florice and her husband, Charlie, have many Haitian friends in their Arizona neighborhood. They pray with, cry with, mourn with, their friends.

The disaster kicked open a rusted file cabinet in a musty old hallway of my unsorted memory coils. The year was somewhere between 1974 and 76. My first husband and I went to St. Croix, Virgin Islands for about five days. He was on an assignment to write a grant for some entity, which I have forgotten if I ever knew, to apply for funds for an alcoholism rehabilitation program in Christiansted.  From there, we went to Port au Prince, Haiti to spend three days at a small resort, L'Habitation Leclerc. He had seen a tiny display ad for this exotic place in a magazine, and the heart of this staid evangelical-boarding-school-raised boy quickened. L'Habitation Leclerc originally belonged to General Emmanuel Leclerc and his wife, Pauline neé Bonaparte - - Napolean's wild child sister.

In the late 1940s, dancer, anthropologist, and author, Katherine Dunham, bought the property.  She leased most of it to Olivier Coquelin in 1974. Coquelin is often mentioned for bringing discoteque to New York. He hired architect Albert Mangonés to design a 24-villa luxury hotel around the residence. It was a hot spot for awhile, drawing rock stars, jet setters,  and fashion magazine shoots.

My husband and I were just young folks, working for the State of Florida, neither booted nor horsed; most unlikely guests at this posh venue.

The thing that sticks in my mind most vividly, still, is the taxi drive from the airport to the secluded hotel. Crowds of people lined the streets. Some seemed to be living there, with small bundles and baskets on their heads or by their sides.  They all seemed to be offering mangoes for sale. I'm sure that my 58 year old eye traversing that path during the same time period would have seen and retained much more than an image of everyone in the street trying to sell mangoes, but that is the only  image burned into the retinas of the mid-twenties me from the airport-to-hotel ride.

The three days at the hotel were surreal. Uniformed guards with Uzi submachine guns stood atop the stone wall encircling L'Habitation Leclerc. Guests swam in a sparkling swimming pool. It had a fantastical swim-up bar draped by a waterfall curtain. It was a world of manufactured perfection. Beautiful people, like Paige and Dusty, reclined on chaise lounges while white-coated servants delivered lobster and avocado salads in pineapples, and rum drinks in fresh-cut coconuts.

Mornings brought breakfasts of perfectly ripe tropical fruit and croissants, and a lilting-voiced question: "Banana daiquiri, madame?"

Evenings were spent in the dim-lit dining room/bar, Le Salon Noir. We savored rich French meals with a Caribbean accent, and lingered over espresso and cognac, doors open to the sensuous warm night air. There, in the flicker of tall, white candles, embraced by butter-soft black leather furniture, it was easy to forget that any other world existed beyond that walled compound.

The hotel has been gone for a long time, now. Coquelin went on to create an even weirder resort compound in which his pet baby leopards roamed freely. I am not sorry to say I was never there.

Baby leopards grow into full grown predators. Tectonic plates shift, and it all slip-slides away.

 

 

What A Difference A Day Made

I've got good news and bad news. How about I give you the bad news first? Yesterday. Now, that was a doozie of a bad news day. Feel free to skip to the bottom of the page for today. Today was a good news day. Big time.

I spent two hours on the phone with a very nice person, Cindy, with the American Cancer Society. She told me that Florida is one of the worst states in the union to live in if you are uninsured. She reminded me, not that I needed reminding, how hard Florida has been hit by the deep recession, and how many new applicants there are for health care and other services. She told me about Cover Florida, an initiative passed by the Florida legislature last year to attempt to provide health insurance coverage for uninsured folks between the ages of 19 and 64. She advised me to read the small print carefully. Steve has been uninsured for more than ten years, so his recent cancer diagnosis is not covered by any sort of prior condition forgiveness, which makes the Cover Florida program "remarkably unhelpful," to use a favorite press conference phrase of former Secretary of Defense Donald Rumsfeld.

Cindy could not know that with each sentence, her gentle voice was pounding, pounding, pounding me, until I was no longer at my desk, but under it. She advised that even if Steve is approved for Social Security Disability, the Medicare component of it will not begin for an additional two years. Meanwhile, if he is approved for Medicaid health care coverage, that will stop if he begins to draw Social Security Disability because he will be receiving too much money and no longer be eligible.

This conversation came at the tail end of a difficult day, which had started with a woman advising me that the appointment Steve thought he had next week with one of the best urological oncologists in the country was only penciled-in, and tentative, and had, in fact, been canceled. Steve was fully aware that this was only a discounted-fee, cash upfront second opinion and review of his records only, with no "procedures," designed to give him some clue about what sort of treatment he should seek. I won't go into the whole sorry mess here, except to say having to call Steve and tell him there was no longer an appointment was the toughest call I've ever made.
 

 
The distance between five and fifty-five is not so far as we might think. I am sure our mother thought this out-take of little Steve's official kinder garden photo was cute. It is. But it is also the one that got pasted into the old green photo album with the black pages. It made Steve look hapless, and helpless somehow there with his shoes sticking out and a dungarees cuff showing. He's growing everyday now, in that lovely way of blooming adults; a beautiful picture, a disease defying picture.

_______________________________

Steve learned that his "perfect" big sister is capable of swearing a blue streak. We cursed together, and then went back to work. Mary Lou called. She is a terrific woman in New York with the Bladder Cancer Advocacy Network clinical trials matching program. We had talked mid-December, shortly after Steve had gotten the pathology results. She was just making a follow-up call to see how he is getting along and if we had any more information for her to feed into her computer to see if the specs of his cancer matched up with any studies looking for subjects.

I shared my tale of woe about the canceled appointment with Mary Lou. She suggested I call the organization's patient advocate. "They all have one," she said. "And here's a number for the Patient Advocate Foundation. Call them, too." 

I called the patient advocate for the organization that had canceled Steve's appointment.  She is a soft-spoken good listener, well-suited to her job.  She said she would speak to the new patient folks and also to the doctor, that she couldn't make any promises that they would reinstate and honor the appointment, but she would pursue it and get back to me.

The afternoon was wearing on by then, but I made one more call to a different hospital's oncology line. I left a detailed message, made a cup of tea, and sat back down for the call to the American Cancer Society (an impressive group, by the way). "We're here 24/7, and if there is any sentence that has the word 'cancer' in it, then we might be able to help." They might be able to help, for example, with a little gas money to get a person to their treatments,  or help with a repair to a patient's home, or with transportation to chemo. All sorts of things. I liked these people. No BS. Straightforward and forthcoming.

I stood at the fireplace last night and talked to Buck. My misery quotient was high. I went to bed last night deeply worried that no one would treat Steve's cancer; that he would fall through the cracks right before my eyes.

This morning, I resolved to attack the problem from a different angle: to pursue teaching hospitals, even Hill-Burton Act facilities around the country if that didn't work.

The phone rang mid-morning. It was the patient advocate. Steve's appointment was reinstated. I whooped, hollered and did a dance of joy as though his cancer had been cured.

A little later, I was astonished when a woman whose delightful title is RN-Patient Navigator (Beam Me Up) called me from the fine regional hospital whose oncology line I had called and left a recorded message on yesterday.  They will take Steve's case and provide treatment. They have no problem following treatment guidelines from the eminent oncologist Steve will see next week for the second opinion/review of records. 

They will take Steve's case.

Calling Brother Al

There haven't been any posts over at The Longleaf Bar and Grill lately. Perhaps it's a natural asceticism that follows the richness of holiday foods, a leaning toward the dry after a season of juice. I have always been a carnivorous woman, but lately, the smell of steak or rare roast tenderloin makes me nauseous, and therefore, it has disappeared from our plates. Pork, long a staple, has, at least temporarily, lost its sensual allure. Chicken, too, seems just too much. This won't last, of course. It's not a political statement, and I am personally healthy as a young horse. Meanwhile, writing about food is temporarily - excuse the expression - off the table, too.

I'm not wasting away either, so I must be eating something. Oh, yes, I am, and well. Muesli with soy milk, sesame ginger tempeh on baby salad greens, veggie pizza with red and yellow peppers, onion and shitaki mushrooms, roasted beets. Oh, lots and lots of roasted beets, my new love. Oranges, so fragrant I cry at their beauty. I stand at the cutting board and inhale. Deep breathing over a fresh cut orange is the way to go. Trust me on this.

Coffee is still king in my kitchen, but Japanese green tea has become queen. And my treadmill, walking and free weight work has become more routine and more rigorous. Are you sensing a theme here?

I know we will all die - oops, sorry, there I go again talking about that - so avoiding death isn't the point. But it sure would be nice to live to be very, very old and not be sick and then just die. With a younger brother on the ailing list, and our annual physicals fast approaching, I have found diet and exercise religion again, as I do over and over again. They say some preachers are especially good at talking about sin because they know so much about it. That's me.

When I was a child, there either was or I imagined, a radio evangelist named "Brother Al." He preached purple prose over the air waves. His voice would rise to a hysterical high, thin screech, and then drop theatrically way down into a low, growly whisper. Fabulous stuff. He was a master. At the finale, he would tell the audience to put their hand on the radio, pray about what was worrying them, and then send Brother Al a dollar and their prayers would be answered.

Brother Al, old buddy. Call me if you read this. Maybe we can make a deal.