Tag Archives: high cost of medical care

A Very Human Condition

When I moved to New York City in 2003, it took me some time before I eventually found work as a New York City Sightseeing Guide.  For the first year, I felt ridiculously fortunate to be able to share NYC with tourists who rode with me on the top of a double-decker bus and to get paid for the pleasure.  That wore off eventually, but in the meantime, I got to know Mandy. 

Mandy, still generally called by what would become her dead name, Stephen, was my favorite coworker. A brilliant guide and former attorney, she was saving up for gender reassignment surgery.

Divorce from a greedy wife, mental illness in a daughter whom Mandy would never abandon, and frequent mandate transgressions had led to her being fired from her high-powered law firm, which left Mandy with no money for the ultra-expensive procedures. In the interim, Mandy made concessions of powerful self-assertion by wearing, in all weather, Bermuda shorts fashioned in bright orange sweatshirt fabric, frowzy blouses and tops that plunged below her prominent and rapidly graying chest hair, and neon-colored sneakers. Her hair and mouth were a whirling forest of bright tangerine curls and a soft, pillowy hot pink glossy triangle.

“I’m a lesbian,” Mandy explained to me the first time she asked me out to dinner.

I was flattered. I had never met anyone smarter or funnier than this person, qualities I have always found irresistible in a man. But I had no interest in being romantically involved with a woman, even a woman who was, anatomically at least, still a man. Of course, I didn’t want to hurt Mandy’s feelings, and though I turned down the invitations to dinner, to movies, to theater, we often sat together as we waited between buses.  

I never tired of listening to the stories she told. The personal stories were harrowing, beginning with a Lower East Side childhood, and the professional stories were infuriating. This person had tolerated more than anyone’s fair share of abuse by the system over the years. If I had been differently wired, if I were capable of loving Mandy as she deserved to be loved, I would have spent all kinds of days and nights with this remarkable human being.

Those first months working on the bus were magical.  What a privilege it seemed to explore New York from an ostensible eagle’s view. As a history and culture buff, I was learning in a way no book or school had ever taught me. Mandy’s wide knowledge of the city enriched each day and broadened my tour repertoire.  Having studied architecture, Mandy was conversant with the eclectic nuances of building styles that comprised our city’s makeup. As an astute political observer, she understood the underpinnings of Tammany, why Robert Moses was more tyrant than savior. She explained to me why the Breslin-Mailer campaign to create the great city-state, a movement I enthusiastically worked for in my youth, was basically moronic.  Having studied labor law, her expertise guided our labor disputes. When the company abused us, Mandy spoke eloquently with great erudition. She knew the score.  She understood what we were entitled to and what was being kept from us with malicious, greedy fury.

Winter descended as I rounded the end of my first year on the bus, and with it came the end of the idyll. Cold weather and heartless employers extinguished the joy.

Eventually, Mandy ended too.

Our company, a startup in every sense of the word, provided no bathroom for our relief.  For a while, we were allowed to use the restrooms in the Hilton Garden Inn, which was less than a block from our launch site, and the management there even encouraged us to buy goods in their gift store and food mart by giving us a generous discount. 

Then one day Mandy farted and sighed loudly in a stall in the women’s room, and a tourist seated next to her, the woman in the next stall, securely separated by a metal wall and a locked door, freaked out at the sound of a male voice sighing on the tail of a roaring fart. She complained to the Hilton management. After that, all guides were banned from the place. No more comfy lounge seats, no more cheap candy bars. No more toilet. I saw no solution to the problem and opted to take a break.

I left the buses to edit a book for the friend of a friend. The book was set in NYC, but the London-based author knew little about our city and wrote locations that were amiss and an Iowa-bred protagonist, who was more accurately an Englishman in New York.  To complete the project, I went to the UK for a few months, and when I returned, Mandy was gone. 

Conditions Mandy had fought to improve had killed her.

Mandy was our advocate, the voice that argued for improvement in conditions atop the buses that were unfit for guides.  We had no place to sit.  We were required at times to perform chores – like helping the elderly up the stairs or carrying baby paraphernalia or lugging luggage up the stairs – that put undue strain on all our muscle groups.  We stood for long periods of time, jostled mercilessly about. We had no place to go to get warm, no relief from the harsh winter exacerbated by the harsh wind generated by the moving bus.

Mandy’s back and health could not take it. She suffered pneumonia and bronchitis and then was injured and re-injured until she finally had no choice but to undergo back surgery.  Like many spinal surgery patients, Mandy did not survive. The company management, who never appreciated what an asset they had in Mandy, was relieved. Tethered by Mandy’s knowledge of the law, they had felt forced to retain her. Her illnesses and back troubles cost them money by way of pay they were impelled to dole out and by insurance rate hikes her claims inflicted. The bloodsuckers were free at last. 

We who loved Mandy, lost a precious friend.  I lost a valuable mentor.

I find myself wishing for her presence lately.  She’d tell me why the current state of affairs for Trans people cannot hold.  She’d tell me to keep the faith.

“Don’t give the bastards any power,’ she’d laugh.  “They’ll turn to dust just like the rest of us.”

Save Our Souls

My friend buried her older brother Donnie the other day.  Despite the fact that she buried her husband less than a year ago, and she’s still a young woman, my friend carried herself with stalwart grace, and only once did she lose her composure.

“He shouldn’t ‘a’ died so young.  You know?  It was his meds.  No one paid attention to his health.  They just wrote his ‘scripts and sent him on his way.  No time for assessment.  No time for monitoring.  Just move ’em in, move ’em out.  No one in the system’s interested in overseeing the whole person of a mental patient; they treat the symptoms, satisfy themselves that he won’t kill himself or anyone else, and they’re done for another six months.”

I nodded, not knowing what to say.  I’m no fan of the American health care establishment, and I had had another dose of that reality the day before.

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A friend whom I’ve known for many years invited me to lunch for the first time in a very long time, and we talked, as one does with an old friend, of many random things.  Finally, after nearly three hours of catching up, I asked about his children.  He talked about one, a college freshman, and laughed with fatherly pride at the son who complained vigorously about all the extraneous displeasures of college life — the food, the noise, the weather — but seemed happy enough with his classes.  After a few uncomfortable minutes, I gathered the courage to ask about his other child.

The answers were vague, and, having had enough experience to know the signs, I sensed that all was not well.  Then I found the wherewithall to ask pointedly how the boy was.  Really.

“He must be at least nearly out of his teens by now,” I averred.  “Last time I saw him, he was so cuddly and so. . .”

“Beautiful.  He was the most beautiful child ever,” replied my friend.  Then he was quiet again.  I waited.  Then I had to ask.

“Is he in school? Working?”

“No.  He’s home.”  A long pause, some throat clearing, fingernail cleaning.  Then,  “He is schizophrenic.  And he’s terrified to leave the house.   To tell you the truth, he’s nearly twenty, and he goes nowhere.  In fact,  I haven’t had a night out since we adopted him.  We can’t leave him alone.  He’s incapable of functioning without at least one of us there. ”

Knowing that my friend’s finances are, to say the least, strained, I nodded.  “I guess you can’t hire help.”

“Ha.  That’s a laugh.  If he were developmentally challenged and needed care for retardation, we could get state help.  But for mental illness?  Nothing.  I finally got him on Medicaid, and they’re trying to take it away because I make too much money — which means I make over $7000 a year — but he’s an adult.  No insurance I could possibly afford helps with any of it; we get some breaks on meds, but . . . ” His voice trails off.  He doesn’t really want to complain.  God forbid he seem to feel entitled.

Our conversation turns to the woeful nature of the American approach to mental health.

Insurance is expensive.  And except for the premium types of coverage, few offer assistance for mental health providers, who are also expensive.   Obsessive compulsions, ADHD, anxiety are not considered sufficient reason to warrant insurance coverage, and yet sufferers can be paralyzed by the effects.   Depression and bi-polar disorder are more readily recognized as debilitating, but in order to be helped, the patient often must first be hospitalized for treatment , then marked for life as a result of a violent act against self or others.

As expensive as they are, drugs have replaced the therapist’s couch as coping mechanisms.  It’s rare, except for those for whom money is no issue, that a psychiatrist spends hours with a patient planning behaviors and exploring strategies for self-preservation.  As it was with Donnie, the psychiatrist’s main function is to write the prescription every several months; no more than a perfunctory visit from a social worker sustains the patient between visits.  The appointments with the psychiatrists take no more than 15-20 minutes, and they are basic question/answer sessions.  “How do you feel?  Any headaches or stomach difficulties?”  No examination accompanies the writing of the prescription even if, as in the case of my friend’s brother, the patient is clearly struggling physically.

Donnie, a strapping man who leanly stood 6’2″before he began taking his meds, had grown morbidly obese.  He labored to breathe, complaining of COPD symptoms and of trouble staying awake.  When he died, he was in his early fifties, and no doctor had taken the time to seek out the causes of his discomfort.  His insurance didn’t allow for more than the annual physical, and there was no alternative to the drugs that controlled the mental disease, drugs that necessarily weakened and abused his body.

The problem is not confined to mental health.  We’ve all seen the ads on television promising that if you just choose a fancy cancer treatment center, you will be cured, that drug addiction will lift away when you fly to that special island where ultimate rehab resides, and we all hope we will be lucky enough to get a transplant in the event one of our organs shuts down.  But choice of hospitals and retreats and transplants are governed by money, which is largely controlled by the extent to which insurance covers us.  When another friend needed a second kidney transplant, his wife was a willing donor, but in order to get that kidney into his body, my friend had to prove that he had the resources to see his doctors regularly and to buy his nearly $40,000 worth of medications EVERY YEAR.

But despite the fact that the problem is universal in the realm of medical care, it’s more likely that a patient who cannot get the necessary treatment for cancer or renal failure or hepatitis, etc., will die than wind up on the street unable to care for himself, a burden to his family, a weight on society’s midsection.  In some ways Donnie was lucky.  He took his meds, was fairly lucid and found some measure of happiness before he dropped dead of a massive heart attack.  The moderately ill person who is handicapped by any one of a number of disorders that render him unable to hold down a job, stick to a path, find personal satisfaction is more likely to disintegrate slowly over time, growing more anxious and depressed and lonely by the day.  She may be homeless or displaced, and she will likely be angry and frightened every day of her life. imgres-3

With financial resources that ensure freedom of choice, anyone can find a good physician for any ill.  If at once you don’t succeed, you know you can always try again.  But for those of us with limited resources, a list of providers is offered, and if no one on that list is expert in the illness for which we need care, we are simply out of luck.  Therapists abound, but a good therapist us a precious commodity, one that is too often impossible to find.

I honestly don’t understand why the masses don’t take to the streets over health care.  Every day families — middle class families, families no one would have heretofore thought of as indigent or needy — bury loved ones, children and parents alike, who should have been cured.  Women die in childbirth in this, the richest country in the world, at an alarming rate, and homeless people wander our cities where they live in misery and threaten our safety because they are not being treated for the illnesses that have disabled them.

We tolerate our own demise.imgres-1