Monday, December 24, 2007

Butt-Crack “Angel”

Reading Penny Richard’s entry about Blue Christmas gatherings reminded me of a time when I needed help finding my joy.

Many years ago, my husband was on strike with his union for six-months. We signed up for food stamps and sold furniture to pay the mortgage. Thoughts of Christmas presents were out of the question. Even though we had a tiny 900 square foot house, figuring out how to pay the utility bills kept us awake at night. Because he worked so little, we had to self-pay our health insurance out of threadbare pockets. We had our first child. I had to have emergency surgery after our baby’s birth. I thought the worst had finally happened when our baby started having seizures.

Until then, my life was untested. I had a reasonably secure working class childhood. I had both my parents, a solid roof over my head, relative health, free public education, potable water, a neighborhood where I could stroll the streets at night, friends… In the grand scheme of things, this was small potatoes. Nevertheless, it was my biggest trial to date.

I felt overwhelmed. Then, things got a little worse…

Very unpleasant seepage began bubbling up from the bowels of the waste removal pipes. It oozed into our basement family room.

“Family room” is a generous description. It was a partially indoor-outdoor carpeted cinder block box, painted Harvest Gold, so popular in its day. We divided it into three small areas; my little stained glass studio, a combined laundry and guest bedroom (Oh, my poor guests.) and a music room. My husband’s saxophones, and other hand-held instruments were safe, but we just were not sure what would become of his precious B3 Hammond organ, amps and other electronic equipment standing in poo.

It happened on the gloomiest of gloomy days; no hint of the sun, just low hanging misty clouds. No green grasses, only brown. The trees reminded me of skeletons and the atmosphere matched my mood. As I sat near the window watching for the Rotor-Rooter guy, I started crying. It was an ugly cry; a runny-nosed, red-faced, woe-is-me, ugly motherfucker of a cry.

When he arrived, I pointed him to the basement, and resumed my cheerless teary perch at the window. Eventually, I heard him clanking things below me. My sense of decorum overcame my depressive fog and I ventured downstairs to offer him a drink and see what he was doing.

I plopped myself down on the last step and watched his backbreaking labor. Bending over a drain, he pushed a snake down, then up a little, then down more. He was a 40-50ish barrel-chested big-bellied fella with a kind face; though I had not seen his face since I let him in the house. No, I was staring straight at the butt-crack end of his body, bent over my sewer pipe.

I started the conversation. “So, what’s the problem?”

“Tree roots”, he grunted as he pushed the snake in deeper.

“Tree roots?” I said incredulously.

He pulled hard on the snake, ripping out the last of the blockage, “Yeah, roots” he said breathing heavily, as he braced himself against the wall.

“That’s just great,” I whined. “It’s the deadest time of the year. Nothing is growing and my tree roots decide to invade my sewer pipes. Great…just great…” my voice trailed off.

He straightened himself up, pulled off his gloves, and accepted my offering of iced tea. Yanking his pants up by the belt loops, he paused, then took a big drink. As he started packing up his tools he gave me what I thought, was my first horticulture lesson. It was so much more.

Now, I swear to you that every word you are about to read is absolutely true--without a hint of exaggeration. I wrote it all down after he left, so I would not forget it.

He said, “Now is when real growth happens. See, in the fall the sap runs down to the roots, and the leaves fall off the tree. It just looks dead in this inhospitable season. In fact, it has never been more alive. The sap is feeding the roots. They grow longer… deeper, making the tree more stable, strengthening it. In the spring the sap will run up the tree and new growth appears above ground. If the tree doesn’t grow at the roots in the winter, it dies.”

He looked straight into my puffy red eyes, smiled slightly, and said, “It’s like that for people too.” And with that, he finished packing his tools, handed me the glass, accepted my check, and was out the door.


I went back to my chair and suddenly the gloomy day looked a little brighter. My funk was lifting. Was it true, I wondered? Was I in a “winter phase;” would spring come again? I wondered if it was also true that, I was growing, getting stronger, making my foundation more firm because of my life circumstances. I wasn’t sure then, but now I know that, of course, it made me a stronger person.

I am not one of those people who believe, “God will only give you as much as you can bear.” There are times and places where people are dealt way too much to bear. But most of the time we can use adversity, darkness, danger, even despair to become more fully human and to recognize that it happens to others too. It can strengthen our understanding and relationships with oppressed people; if we open ourselves to it. Struggles for justice and equality are born out of circumstances like this.

Nor do I think I “entertained angels unaware.” I think the great whomever and her angels are far to busy to worry about my sewer. However, I do believe my rotor-rooter man, with all his humanity, looked up from his drudgery and stepped outside himself, just for me. He saw a young inexperienced mother who, in the midst of her first real crisis, needed support and a different perspective on her hard times.

Now that was a Holiday Miracle.

Peace on Earth, Goodwill To You All.

Saturday, December 22, 2007

Too Late for Nataline

Nataline Sarkisyan was only 17. She had leukemia and recently received a bone marrow transplant from her brother. Complications from that transplant caused her liver to fail. She died December 21, 2007 at 6: PM. Our hearts break for the Sarkisyan family’s loss of their lovely daughter and sister.

CIGNA Insurance Company initially denied Nataline Sarkisyan’s liver transplant surgery. Their justification: “it was too experimental.”

The company finally agreed to pay for the surgery; eight days later after news of their initial decision became public; and just before Nataline died at the University of California, Los Angeles Medical Center.

Clearly, it was a public relations decision, not a health care decision; way too little, way too late and for all the wrong reasons.

Nataline’s death is another illustration of our morally corrupt for-profit health care system; and the lengths insurance companies will go to insure profitability.

What is Experimental?

According to Wikipedia, “Liver transplantation nowadays is a well accepted treatment option for end-stage liver disease and acute liver failure.”

It was 1967 when Dr. Thomas Starzl performed the first successful liver transplant in Denver. Liver transplantation remained experimental and patient’s survived at a rate of about 25% through the 1970s. Sir Roy Calne invented the first anti-rejection drug and patient survival rates dramatically improved. Specialists now perform liver transplantation surgeries at over one hundred centers in the US, as well as numerous other centers worldwide.

1989 saw the first transplant of a partial liver from a live donor. It is possible to donate a portion of a liver, because to some degree, it can regrow tissue.

In 2005, about 6,500 patients received liver transplants in the United States. More than 35,000 people on the planet have had successful liver transplant surgery. About 17,000 Americans are currently on a waiting list for a liver transplant

One-year patient survival is 85-90%, and outcomes continue to improve. Next to the kidney, the liver is the most commonly transplanted major organ.

This is not an experimental surgery.

What was Unusual?

In a letter reversing their initial decision, Deborah Garnsey, a registered nurse who reviews cases for CIGNA, said she had reviewed the family's appeal on Thursday and decided that day "to make an exception in this rare and unusual case."

On Thursday December 20th, friends, family and members of a nurses association held a protest outside CIGNA headquarters in Glendale, urging the insurance company to reconsider.

That is what is unusual about this case. It was the lengths the family and the California Nurse’s Association were willing to go, to bring this story to the public. Unfortunately, CIGNA still won. They delayed their decision long enough to ensure that Nataline would not survive. CIGNA will not have to pay for the surgery or for her after care now.

What would it cost?

According to the United Network for Organ Sharing, estimated charges for liver transplantation are around $314,600; annual follow-up charges run about $21,900 for the rest of the person's life.

In 2000, the Southern Medical Journal published a study titled, Liver Transplantation in the Era of Cost Constraints. Here is what the researchers found:

These tremendous expenditures have brought pressure on the health care industry to minimize cost of services and/or eliminate services. Managed care has been touted as a potential means of limiting the explosion of health care costs. Managed care corporations and third-party payers in turn are putting pressure on providers to limit costs. This has resulted in a shift of the financial risk from the payer to the provider and has put pressure on transplant programs… Studies have shown that transplantation in the sickest patients is not cost-effective… Thus, for transplant centers to become more economically efficient, they must… streamline costs and become more prudent in patient selection. [emphasis added]

Clearly, the decision about who gets a transplant no longer belongs to scientists, but to actuaries. Each year more than 27,000 Americans die of liver diseases.

People with disabilities face a difficult battle with physicians about the value of our lives. However, in this case, we had doctors and nurses fighting to keep Nataline alive, and bean counters signing her death certificate.

What Will Happen Now?

Attorney Mark Geragos told reporters at a Friday news conference that the girl's family will file a civil lawsuit against CIGNA. He is also asking a California district attorney to look into filing manslaughter or murder charges against the company. "CIGNA Health Corporation literally, maliciously killed her...they consciously disregarded her life," Geragos said of CIGNA. "And they did that for one specific reason: they did not want to pay for her after-care."

The California Nurses Association (CNA) publicized Nataline's case, calling it an illustration of the need to abandon private insurance coverage in favor of a single-payer plan.

"If CIGNA could approve the transplant yesterday in response to hundreds of phone calls and people pounding on their door in Glendale, why couldn't they have done it eight days earlier?" said a CNA spokesperson. "The transplant was recommended by the medical professionals at the bedside, they should have been listened to."

Did leukemia and liver disease kill young Nataline Sarkisyan? Or, did she die because CIGNA, a profitable company, was not profitable enough for its shareholders; so they made a callous decision to save some money.

That answer is obvious.

It will take Americans refusing to let an avaricious insurance industry make our health care choices. Fighting for single-payer/universal coverage is the first step.

Friday, December 21, 2007

I’m in Love

Forgive this indulgence. When I started writing Big Noise, I dedicated it to the battle for freedom, justice, and equality; but fighting is the furthest thing from my mind. I have fallen giddily, happily, deeply, and wildly in love.

I am now a grandmother to beautiful baby, Sabine. She was born on December 19, 2007 at 10:17 PM.

My daughter and her husband not only bestowed me the title of grandmother; but allowed me the privileged to present at the baby’s birth.

I know you will believe me, being the objective, analytic researcher that I am, that no more beautiful a child, ever graced this planet.

Mom, Dad, and the baby are all doing great! Mike and I? We are walking on air.

(Photo Description: A picture of me, looking very tired, but happy. I am holding baby Sabine, who is swaddled up in a blanket with only her head and one tiny little hand escaping. She has lots of dark curly hair... just like her grandma).

Tuesday, December 18, 2007

Will Joe be Home for Christmas?

I got a phone call at work. It's the kind that lingers long after you hang up the receiver.

Maria Forest and her husband, Joe, were looking forward to retirement; until their world turned upside down. First, the company where he worked for 33 years, went belly-up a year after he retired; he lost his pension. Two years later, he got a diagnosis of Amyotrophic Lateral Sclerosis (ALS).

No one expects that; they were understandably shocked and insecure. He stayed at home for a while; then landed in the hospital because it was difficult to breathe. Hospital staff, 50-60 miles from their home, decided he needed to convalesce in a nursing home, close to his wife. Maria, not knowing what to expect, agreed.

The man she left at the hospital was not the man she saw in the nursing home just 24 hours later. Joe, in one day, became despondent, weaker and his speech less intelligible. He begged to come home. Maria wanted to bring him home, but didn't know if she could care for him. Besides, she didn't have a respirator and didn't know how to get one.

Within a month Joe was back in the hospital. His central line port was infected and he developed a urinary tract infection. He begged his wife not to send him back to the nursing home. It was the only thing he wanted... to be home for Christmas and to die there.

Maria and Joe started looking for help. The hospice program said they would come in and help Maria care for him. All they needed was to get that respirator. The hospice program suggested she call their local center for independent living's reintegration program, a Medicaid waiver program set up to help people get out of nursing homes.

The person on the other end of the phone was all ready to help; until she found out he was 63. "I am sorry," she said, "this program only goes to age 60." She provided no more information about how Maria might get her husband home for Christmas.

Maria called the doctor who had been caring for Joe. She asked him for a prescription for a respirator, so Medicare would pay for it. The doctor told her, "Sorry, that's out of my territory." Out of his territory? What the hell does that mean? He made no recommendations about "in-territory" doctors.

I'm not sure how she got my work number; probably somewhere in the dance I call, "The Social Service Shuffle."

If you've ever tried to secure services, you have danced this dance. It's like square dancing, only in a straight line that goes absolutely nowhere.

You dance with one bureaucrat and then get passed to another, then another, then another... Each person is perfectly nice, dancing in step, until you hear "You don't fit our criteria." Now it's time to move on; as you leave a particular partner, you get another phone number to call.

Initially, Maria's thoughts were clear; but the system put her in a tailspin. By the time she called me, she didn't know how to tell her story or explain what she wanted. Most people have to tell their story from the beginning... especially those in crisis. They don't have the ability to synthesize and analyze what's happening to them.

As the story unfolded, I said, "You've been working really hard to make this happen, haven't you?" She had no words... she was crying on the other end of the line. Slowly, we deconstructed her story and returned to the need for a respirator prescription.

Remember Joe's , "it's not my territory" nursing home doctor? Maria is pretty sure he is part owner of the facility. Apparently, his "territory" covers what will line his pockets.

I told her there was a doctor at the hospital that was overseeing his respiratory care. I encouraged her to call the hospice and ask them to get the doctor to write the prescription. I gave her my name, spelling it all out, and phone number. I asked her to call me back if that didn't work. No more phone numbers. The shuffle stops here.

It is her question, that lingers with me still. "It's all he wants... to come home for Christmas and to die here. Why can't I make it happen?"

Saturday, December 8, 2007

Divided We Stand

When did:

We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.

I, a person in the United States, in Order to form a more perfect Division, establish Prejudice, insure domestic paranoia, provide for world domination, promote the welfare of a few, and secure the Blessings of Liberty to the power elite and their posterity... do reject and pervert the Constitution of the United States of America.

I understand that when the founders wrote preamble of Constitution, lots of folks were left out. We the people, excluded slaves, women, people with disabilities, peasants, illiterates; really all but white property owners.

But there was, at the very least, the acknowledgment of a social contract between the people; a sense that they were in it together, that their futures were bound together. They thought in terms of "we".

"We've" lost that.

People with little, blame people with less. People with insurance feel absolutely no social contract with those who do not. Domestic tranquility is replaced with race-hatred, gender-biased legislation, ableist discrimination, wall-building and color-coded terrorism threats.
Liberty applies to still a select few. Common defense is now aggressive; offensive (in every sense of the word) attacks. Oil laying under another land, is ours by manifest destiny; as are the vast resources of the world, the diamond in Africa, the spices in Granada...

Repeating Itself
Historians Arnold J. Toynbee and James Burke believe the Roman Empire (a rotten system initially) didn't so much fall, but experienced steadily declining decay of their institutions. In their view, the Empire could never have lasted without radical reforms.

Their economy plummeted into "Raubwirtschaft", or to a plunder economy;
where the goal is to steal the wealth and resources of a another country or area. It also relied on booty and a tax system that drove small farmers into default or into debt to the elite who were exempt from taxation. Their slave labor prevented a middle class with purchasing power. They exported few entrepreneurial or technological goods.

All this was happening at the same time military costs and governmental pomp increased. "Financial needs continued to increase but the means of meeting them steadily eroded."
Sound familiar?

Toynbee & Burke propose that the powerful Roman Empire ended, long before its final dissolution.

Are We Our Brother's & Sister's Keeper?

How and when did this happen to us? Is it human nature or inherent in our system? Is the only way to survive through "radical reforms?" Will those reforms turn toward a new, more inclusive definition of "we?" Or, are we destined to follow the "I" path to our own demise?

We must stop pitting Christian against not as Christian and other religions; race against race;
able-bodied against disabled; heterosexuals against all other sexuals.

Do do otherwise, is to design our final destruction as a people.

Monday, December 3, 2007

The Willard Suitcases

Photograph of an attic filled with what looks like old bunk beds lining each side of the attic. There are suitcases piled on the When Willard Psychiatric Center in New York's Finger Lakes closed in 1995, workers discovered hundreds of suitcases in the attic of the abandoned building. Many of them appeared untouched since their owners packed them decades earlier before entering the institution.

The suitcases and their contents bear witness to the rich, complex lives their owners lived prior to being committed to Willard. They speak about aspirations, accomplishments, community connections, but also about loss and isolation...

The suitcases and the life stories of the people who owned them raise questions that are difficult to confront. Why were these people committed to this institution, and why did so many stay for so long? How were they treated? What was it like to spend years... shut away from society that wanted to distance itself from people it considered insane. Why did most of these suitcase owners outlive their days at Willard? What about friends and families? Are the circumstance today better than they were for psychiatric patients during the first half of the 20th century.

So opens the powerful Willard Suitcase Exhibit. It's not an easy place to visit. It has apparently been up for a while. My friend, Jane, directed me there this morning, I have been unable to think of little else today.

There was no getting out. Any life they knew before was over. From the day they entered Willard, their labor was exploited, their connection with the outside world severed, their very personhood stripped.

My heart is heavy having just left the site. It chronicles the lives of the owners of the suitcases. Peering into someone's suitcase is being a voyeur. I had invaded someone's personal space. I was violating their privacy.

Yet, these people, from the moment they packed those suitcases, lost any right to a private life, for the rest of their lives.

There are suitcases for:

  • Sister Marie Ursuline, #15468 lived at Willard for more than 30 years, after peripheral involvement in a church scandal and depression.
  • Mr. Lawrence, # 14956 who lived there more than 50 years after a head injury. He was the unpaid gravedigger who, upon his death, was buried in an unmarked grave.
  • Roderigo, #15902, survived 72 years at Willard. In the 1960s, someone wrote this observation in his file, "Years of institutionalization appear to have been a mistake, as far as duration, this man appears in perfect mental condition now."
  • And, unfortunately, many more.

Willard Psychiatric Hospital is in upstate New York, about 65 miles from Syracuse. After it closed in 1995, the curator of the New York State Museum drove there thinking he'd grab some old furniture or a nurses uniform, some small artifacts. What he found was over 400 suitcases, untouched for decades; four hundred lives, frozen in time, packed up in the attic of an abandoned building. From 1869 until it closed, over 50,000 people sojourned at Willard.

Why couldn't they keep their suitcases? What was so terrible about having a little something of their own? Apparently, plenty. In institutions, order is the rule. Not unlike the army they break you down until you re-emerge, remade in their image. You walk when they say walk, eat when they say eat, sleep when they say sleep. It's called ''hospitalism'' or ''social breakdown syndrome.'' Symptoms include apathy, withdrawal, and the loss of social skills. The difference between basic training in the Army and basic training in a state run hospital is that in the army, you get the opportunity to leave.

It is heartbreaking to wander through this online exhibit. Others have ventured through before me. Grace, at What if No One is Watching, wrote a very personal response that also raises the issues of gender, class, and race. If you haven't already, read it here.

Is it better today?

The human suffering illustrated by the lives of the suitcase owners continues today, often differing more in form than in substance from the lives of mental patients a century ago. Thousands are admitted to hospitals daily for treatment of emotional distress, often cause or aggravated by social conditions. If hospital stays are considerably shorter today, cue to aggressive use of medications and the service limitations of HMOs, the are no more marked by recovery than in the days of large state hospitals like Willard.

Hell no, it's not better! How many more people will be abused, how many more lives ruined, how many more unmarked graves, will we have to endure until all our people are free?



The Willard Suitcase Online Exhibit. What They Left Behind:
Suitcases from an insane asylum tell of lives long lost. Gonnerman, Jennifer . Village Voice, 1-28/2-3-2004.
State Psychiatry Hospitals forced to Change or Close. Sobel, Dava. New York Times, 2-10-1981

Sunday, December 2, 2007

Picture a Family

When my girls were growing up, they had adult role models that identified their gender/sexual identity in many ways. Though I hate boxing them into categories, they were gay, straight, bisexual, butch, lipstick lesbians and more.

When I had those birds and bees discussions with my children... we talked about birds and birds and bees and bees too.

I also tried to teach them know that “family” is a very subjective term, that is best defined by the people in that particular family. We certainly did not fit the mythical family norm.

I was a single mom of two, who adopted another child as a single parent. My birth childrens' father was active in their rearing, as were other surrogate males; my adoptive daughter knew her dad. We had different names, and we were a family.

I moved away from my birth family when I married, but maintained a strong desire for family. I developed, a “family of choice.” My girls had nearby, aunts and uncles; to this day they continue to refer to them in familial terms.

They were my brothers and sisters. Who is to say these men and women were not my family. Perhaps the inheritance laws would denounce them as next of kin, but I have precious little to pass along anyway.

Take my friends Joannie and Anne. They met when Anne was pregnant with Johanna. It was nearly love at first sight; Joannie immediately became family, and we all joyously awaited Johanna’s arrival.

A few years after Johanna’s birth my daughter was babysitting for her “cousin”. Afterward, Anne dropped her off. I noticed she was fidgety. I poured her a cup of coffee and my daughter ran off to play.

“Why didn’t you tell Angie that Joannie and I were lovers… On the way over here I mentioned that I needed to stop by and pick up my anniversary gift for Joannie.” She spoke in a soft, concerned tone.

My daughter who had been in their home many times and apparently oblivious to the fact they shared a bed responded, “I didn’t know you were a couple… I thought you were roommates.”

Anne replied, “No, we’re a couple and it’s our second anniversary!”

Angie said, “Cool. What did you get her?” And just like that, she accepted them as a couple and was ready to celebrate. Oh, if only adults could be so open-minded.

Anne was pissed… at me! I was surprised. I explained to her, “I have yet to explain the relationship of others who dwell together to my kids. Did you want me to sit them down and say, “Kids… Auntie Anne and Joannie are special. They share special love between women and although the law won’t let them be married, it’s like they are.”

“Or, would you want me to accept your family as I would any other of my home-made family or neighbors, without explanation, and her realization as to the nature of your relationship come naturally, as it did?”

I was really asking. I felt in my gut, I had done it the right thing… but maybe I was wrong. It’s difficult to know, because society puts enormous pressures on its narrow definition of gender identity and even narrow definition of what constitutes a family.

“No… I guess… this was better. BUT YOU SHOULD HAVE WARNED ME.” she said, only half-kidding. (Oy, family!) :)

It is 20+ years later, and I still wonder if I did the right thing. The issues of gender, sexual orientation and family are so complex. What do you think?

(The proud mother in me cannot publish this blog entry without telling you... when Angie rejoined us... she brought with her a homemade anniversary card for Joannie and Anne.)