Wednesday, March 15, 2017

A Beloved Old Friend Stares Death In The Face

The cold, cruel world paid a visit this week when a lifelong close friend of mine sent me this devastating note below telling me that she has been diagnosed with a rare and fatal disease. She was diagnosed two years ago, but kept it from many of her friends. But she summoned up the courage to disclose it to me. I'm shocked, and heartbroken. Her terrible news just stopped me in my tracks. But I'm proud of my friend's courage, and inspired by her will to live. And I'm sharing her letter with you. Because she wants me to. And because it's important. She asked that I please use an alias for her. She prefers not to use her real name. Because if she is able to get off disability, she fears she will not be able to find work, as she is well known in her community. That's of course the very least I can do for my beloved old friend.
                                                                             --- Jamie Reno


Dear Jamie,

I’ve always said that life can change in a blink of an eye. Mine did, in January 2015, when I was diagnosed with idiopathic pulmonary arterial hypertension (PAH).

A very rare disease, PAH affects 1 in 150,000, or 7 to 8 people in 1 million. Putting it in perspective, that would mean that in New York City, approximately 56 to 64 people are afflicted with PAH.  

It's a chronic disease in which the arteries in your lungs become narrowed, making it harder for blood to flow from your lungs and thus raising the pressure in those arteries.  

This causes the right chamber in your heart to work harder to pump the blood, eventually causing the right side of your heart to weaken and fail.

My disease is fatal. I know how I will die: from a massive heart attack. As I write this, the right side of my heart is three times its normal size. If I don’t die of a heart attack, I will slowly suffocate, gasping for every breath.

Before I found out that I was sick, I decided to leave my corporate job and establish my own company. I had a full medical physical while I still had health insurance with my company. 

I saw a heart doctor, lung doctor, ob/gyn, eye doctor, and my primary care doctor. I did have some shortness of breath, but all the doctors assured me that if I lost a few pounds, I would feel better. 

Great! I had the green light to start my own company. I felt like I had the knowledge in my field to be successful, and grow a company from the ground up. I quit my corporate job of over 25 years, opened my own business, and hired an employee. 

Still, I was short of breath. I had COBRA insurance, and started seeing heart and lung specialists. When I didn’t feel I had gotten a good answer or report, I saw another specialist. And then another.   

I just knew something was off.  Why could I not walk a few feet without getting short of breath? Each specialist thought that I should either lose some weight and/or that I had asthma.  

I started using inhalers, but they did not seem to help. And the shortness of breath was getting worse.

My work is very physical, and can require me to be on my feet sometimes as much as 12 hours a day.  How could I keep my company going, if I can’t walk more than a few feet without having to stop to catch my breath? 

In December of 2014, I noticed that my feet were very swollen. I mean so swollen that I could barely put shoes on. I called a heart doctor, and when he saw my feet, I could see in his face that he was alarmed. He said we need to do a right heart catheterization. Now. 

I prepared for the procedure, and afterwards, he came into my room and said, “Katie, I think you have pulmonary hypertension." I thought, "So, okay, fix it."  He said, “Katie, this is bad. Really bad. I need you to see a specialist.”

He set up an appointment for me with a specialist at a local university hospital. I didn’t know it at the time, but I was assigned one of the finest pulmonary hypertension doctors in the country. I found out that day, that I had this disease, and I began to process exactly how serious it is. There is no cure.  

Because mine is idiopathic, the doctors are not sure how I developed this disease. Since it took so long to diagnose, which is not unusual, my case is Class III, severe.  

Meaning that my heart is in severely bad shape, and that my ability to breathe has become labored with doing normal activities such as bathing, dressing, fixing my hair, laundry, grocery shopping, household chores.  

When you've moved into Class IV, you have trouble breathing while just lying in bed. This disease is often misdiagnosed as asthma. Only a pulmonary specialist can diagnose it, and only after having a right heart catheterization.

I asked my doctor, “How long do I have?”  

He wouldn't answer, but did tell me, “If you don’t take any medication, you will die within 6 months.” 

Six months. I was that sick. I am that sick.

"Great, so now I’m sick," I said to myself. "I’ve only just started a new company a little over a year ago. And I took all my money out of my 401K to put into my company. Oh, and my COBRA is about to run out in 4 months. What the hell am I going to do?"

My doctor started me on two drugs to help slow the progression of the disease, and to help open the arteries of my lungs. There is no cure – there is no possibility of getting better. But they can hope to slow the progression of the disease.  

One drug is called Adcirca and costs $3,418 per month, the other is Opsumit and costs $7,839 per month. That’s $11,257 each month, or $135,084 per year. 

My doctor puts me in touch with a foundation in Virginia which helps people with the top 20 rare diseases in the world. Thank God for these people, as they helped me to navigate the choppy waters of insurance and social security disability.  

After many long conversations with this foundation, I decided that I would need to sell my company and go on disability and Obamacare. That would be the only way I would be able to afford my medication.  

It’s simply too expensive to pay for it with private insurance.  Even with private insurance, my deductible was over $10,000, and each month my medication would have cost me a minimum of $800, out of pocket.   

Meeting those types of numbers each month was out of my reach. I don’t think I could have even done it when I was making a high corporate salary. Being sick is very expensive.

Had it not been for Obamacare when my COBRA ran out, I would already be dead. I had a pre-existing condition.  

I would have had to declare to any insurance company that I had PAH. And my medications were very expensive. Not one company would have insured me. 

Although I was “maintaining” my numbers with my disease, I was not improving with my six-minute walk tests. So in June of 2016, my doctor started me on another medication, hoping that perhaps I would be able to walk further without so much shortness of breath.  

This drug, which was just recently approved by the FDA, is called Uptravi. It costs $22,324 per month, or $267,888 per year. Now for just three medications, my costs are more than $400,000 per year. 

I take 41 pills a day to stay alive. Pills for depression, allergies, water weight gain, potassium… the list goes on and on. My medications all together cost nearly half a million dollars per year. If I won the lottery, it would be gone very quickly, just for paying for mediation. Half a million per year to stay alive.

I'm a single, white, college educated, well-read woman in her mid-fifties who made a nice corporate salary that allowed me to purchase my own home and travel whenever I desired. I wanted for nothing.  

I ate out in nice restaurants nearly every day, and enjoyed a nice lifestyle with my friends and family. I thought I would be just as successful opening my own business. I had, after all, more than 30 years of experience in my field, and was well known in my community.  

I had all the components needed to be successful. Except my health. Little did I know, I had been sick for many years. 

I’m also a women who's worked since she was 14 years old.  I worked every weekend during high school, and during the summer I worked over 40 hours per week. 

During my first three years of college I had a part-time job, and took a full-time job my senior year. Now, in my mid-fifties, I’m on disability.  

To look at me, you would have no idea that I take 41 pills a day and am forced to live on disability because I can’t afford the premiums and the deductibles with my illness. 

However, I do not feel guilty for being on disability. I put into the system for 43 years of my life. I paid 25% of my salary for taxes. I paid my dues.

But I thank God for Obamacare. It allowed me to get insurance, when I first discovered I was very, very ill. No insurance company could refuse me, no matter the cost of the drugs. No matter my diagnosis. 

I’m scared to bits thinking of what Trump and the Republicans will do with healthcare. I will be eligible for Medicare in the summer of 2017. 

What will happen to me? 

I would say to everyone who thinks Obamacare didn’t do much – think of me. 

I would say to everyone who asks, “Why is it the responsibility of the government to make sure every American has health care?” I hope they think of my story. 

Because without help from the government, I will die. With no access to drugs, I will die within 6 months.

Thanks for listening, Jamie. 

Your friend always,

Katie



Sunday, February 26, 2017

La La Land and the Search for Something Real

For the record, I loved "La La Land." It's a touching, masterfully directed story of two Hollywood artists/dreamers searching for success and finding each other. 

It's a unique and unlikely tip of the top hat to the great movie musicals, with terrific songs that stick in your head for days and totally engaging performances by Ryan Gosling and Emma Stone.

But just under the surface of this bright, if bittersweet love story, it's easy to find the dark, ugly underbelly of Hollywood.

"La La Land" is sort of the modern, less cynical companion to "The Day of the Locust," Nathanel West's brilliant and pitch-black novel on Hollywood and its inhabitants - the dreamers, the losers, the locusts, those sad, grotesque hangers-on who think their life has meaning because they once met Gosling's caterer at a party. 

These days, the "locusts" work for TMZ.

Watching "La La Land" conjured up my own decidedly mixed feelings about Hollywood, where dreams are realized but more often shattered. 

Tonight, while you watch everyone celebrating at the Academy Awards, remember that while everyone inside the venue is one of the fortunate ones who had the right amount of talent and/or luck to make it, for every one of these shining stars, there are literally millions of others who never left earth.

They're the ones who still stand outside desperately trying to see, touch or make a connection with one of their favorite celebrities, as if they are gods. And there are even more millions who gave up their dream entirely and went back to wherever they came from.

Hollywood is both a magical place that celebrates creativity and inclusion, and a lost hell, a total facade where, as "La La Land" rightly notes, people worship everything but value nothing. 

And yet the appeal is undeniable. Because we're all dreamers to one extent or another.

La La Land Destroyed America's Finest Novelist

When I saw the film, it immediately reminded me of West's novel, and the underrated 1975 film version of his haunting story. And it reminded me of all the great novelists who sold out and went to Hollywood after their books stopped selling.

Just as Gosling's "La La Land" character, a pianist and jazz purist, sold out by agreeing to join a band that played a bizarre hybrid of jazz and pop that he didn't personally like.

It's not only tragic, and eerily coincidental, it's also fitting that West and F. Scott Fitzgerald, two of the 20th century's most gifted American novelists, died on the same weekend in 1940, and that they both died in California. 

West, reportedly distraught over hearing of his friend Fitzgerald's death by heart attack in Los Angeles, died in an automobile accident near El Centro after ignoring a stop sign.

Sadly, Fitzgerald and West, both of whom came to L.A. along with many other accomplished writers at various times throughout the past century to hack out screenplays for quick cash after their novels stopped paying the bills, both died young and somewhat disillusioned. 

Los Angeles will do that to you. 

"West and Fitzgerald were both writers of a conscience," Edmund Wilson, a writer himself and longtime close friend of Fitzgerald's, once wrote. "Their failures may certainly be laid partly to Hollywood, with its already appalling record of talent depraved and wasted."

Some things never change. Though Wilson died in 1972, I'm convinced he would not only say the same thing about Hollywood today, and but would find plenty of new and perhaps even more damning things to say. 

I think West wold embrace "La La Land" for its ambiguous message about Hollywood, fame, and selling out.

He'd surely conclude that writers and other good people still come to Los Angeles to die, that so much of the real talent in Hollywood is still squandered, and that there remains in that Land of the Lost a locust-like swarm of grotesque wannabes and shrill apologists in chronic denial about the place in which they live and what it does to people.

Los Angeles, which for me is synonymous with Hollywood and vice versa, remains a place that is both wonderful and dismal. 

While there are of course many truly kind, decent people in Los Angeles, the city is largely defined by fake sentiment and blind ambition. It's a place where nothing feels completely real, a place where style suffocates substance, where people are at once perpetually suicidal and obsessed with health and youth. 

In L.A., You're Not Allowed to Age

Los Angeles remains a company town, a show-biz town, a superficial non-city where plastic surgeons are on seemingly every block and even many of its non-famous inhabitants enjoy a bizarre sense of self-importance simply because they drive the same choked freeways as celebrities. 

Many Angelenos who are in no way connected with show business seem to feel this inexplicable validation of their very existence just because they met Emma Stone's personal trainer at the post office or know the guy who washes Hugh Jackman's dog.

Of course, our entire culture, not just Los Angeles, has become fame-obsessed. The locusts, as West called them in "The Day of the Locust," are now everywhere. 

But those who are truly obsessed with both being famous and being near the famous and even semi-famous eventually find their way to L.A. – like bees to a pretty, poisonous flower. 

In Los Angeles, the surreal Mecca of Celebrity, anyone who is even remotely recognizable quickly becomes dangerously delusional and addicted to themselves. It's a sickness for which the only cures are either death or cancellation – which, in Los Angeles, have the same meaning.

Unlike "La La Land," where both lead characters are generally decent people, "The Day of The Locust" is inhabited mostly by monsters.

West eloquently tells a deeply haunting tale of a group of dreamers, has-beens and lost souls all living on the fringes of the movie biz. The story's narrator, Tod Hackett, a smart and personable if benign young observer of the dysfunctional characters surrounding him – not unlike Nick Carraway in Fitzgerald's "The Great Gatsby" – comes to Los Angeles in hopes of making it as a scenic artist. 

Instead, he becomes entangled in a web of lies and fears spun by his superficial new "friends."

Tod develops an unhealthy attachment to Faye Greener, a beautiful, corrupt wannabe starlet who's "kept" by a pitiful, decent simpleton named Homer Simpson (D'oh, yes, that is indeed where Matt Groening got the name for the famous cartoon dad in "The Simpsons"). 

Tod loves Faye, or thinks he does, but Faye, a prostitute by any definition of the word, has stars in her eyes and is neither interested in nor capable of real love. She isn't evil, but she is too narcissistic and insecure to be capable of true feeling.

Faye is classic L.A. If you live in Los Angeles or have ever spent a substantial amount of time there and tell me you don't know at least one person who fits this description, you're lying.

But Stone's character, Mia, too, is classic L.A. She's well-meaning, kind, idealistic and filled with hopes and dreams. And, lucky for her, she has genuine talent.

While Tod continues to try to seduce Faye, he prophetically lands a job working on a film titled "The Burning of Los Angeles," which foreshadows the book's horrific climax: an apocalyptic riot scene outside a Hollywood movie premiere at which Homer, who throughout the book is a gentle yet clearly tormented soul, witnesses the madness around him and finally snaps. 

Up to this point, Homer holds his burgeoning disdain for all the cruelty and immorality in Los Angeles close to his vest. 

But as the lost angels, or "locusts," begin to destroy everything in their path outside the movie house and start a raging inferno, just away from the spotlight the rage and despair in Homer erupts, too, as he mercilessly beats a bratty little child actress who represents to him everything despicable about Hollywood.

It's a terrible, inexcusable act, of course, but Homer isn't really the monster in this compelling story: Everyone around him is – especially this little girl who is both manufactured and destroyed by Hollywood. Homer is simply killing the monster whom he sees as evil. It's disturbing.

Significantly, Tod subsequently leaves Los Angeles, and will, presumably, survive. But the book really isn't as much Tod's story as it is Homer's, who may seem like a minor character, but isn't.

This story is in subtle yet undeniable ways a story told from the perspective of Homer Simpson's innocence. His degeneration from a sweet simpleton to a violent predator powerfully illustrates the influence Los Angeles has on everything it touches.

Fitzgerald Suffers Similar fate to His Most Famous Character

West and Fitzgerald both witnessed this story for real, in a sense, when they came out to L.A. to live among the locusts. When Fitzgerald moved there in the early 1930s, it was indeed the beginning of his slow but sure demise. 

The man who wrote some of the greatest novels of American literature, including "Gatsby," of course, as well as my personal favorite, "This Side of Paradise," did complete "Tender is the Night" while in Hollywood, but soon after he delved deeper and deeper into that eternally sun-drenched Hollywood depression and sank to the bottom of a bottle.

In need of money, Fitzgerald began working as a screenwriter and fell in love with gossip columnist Sheilah Graham (Fitzgerald's wife Zelda had by this time already sadly lost what few marbles she had left). 

Before his death, Fitzgerald began writing "The last Tycoon," a Hollywood novel depicting the life of a compassionate film producer who, like Jay Gatsby, rose from rags to riches. 

Fitzgerald only finished six chapters of this would-be masterpiece, though, before dying in 1940 just a few days before Christmas. His death, the untimeliness and tragedy of it, is not unlike Gatsby's. 

A year later, the manuscript and notes for "The Last Tycoon," which even unfinished amounted to one of the great novels ever written about Hollywood, were published.

But Fitzgerald and West weren't alone. A number of great American novelists – William Faulkner, James Agee and many more – courted Hollywood for various reasons, but typically for money as opposed to any creative pursuit. It was, in virtually each case, an act of commerce, and surrender. Really, it could be said that each of these writers went to Hollywood to die.

My Love/Hate Relationship with La La Land, the place

Since reading "The Day of the Locust" in my early teens and subsequently moving to California after I graduated from high school – though by design I've never lived in L.A. – I've held a sort of morbid fascination with all things Los Angeles, specifically Hollywood. 

I'm intrigued by the fact that Hollywood represents, really, the best and worst of us all. The place where things are more "real" and more "fake" than anywhere else.  A place where some of the greatest art (films and music) in the history of mankind had been created.

I've learned over the years that among those who make great films and music, even those who create lasting works of art in Hollywood with universally positive themes, only some of them ever practice the messages preached in their own art: goodness, fidelity, humility, courage, etc. 

It's amazing how corrupt, immoral, unkind, terribly self-absorbed people can produce such pure, inspiring, life-affirming, wonderfully egalitarian art.

Of course, there are still "real" people in Los Angeles, good people who have normal lives and who insist they do live in a real community. There are lots of people in L.A. who work in the entertainment industry whose hearts and values are in the right place, and plenty more who have nothing whatsoever to do with the entertainment industry. 

And yes, there is real art and real literature and real crime (lots of that), and, to a limited degree, real architecture in Los Angeles.

But for me, L.A. remains a place where the concept of "real" remains elusive. It's still a place defined by the unreal, a place with no center, no true sense of community, and no soul. 

I've maintained through my 35 years living above Los Angeles (Santa Barbara) and now below (San Diego) a healthy disdain and distrust for the place. 

For example, I love movies, but I still generally despise their accompanying culture and the so-called "movie industry." It's such an enduringly false, pretentious world, one in which nothings think they're gods and virtually every inhabitant is in deep denial about one things and/or another.

Denial – of age, of place, of traffic, of crime, of reality, of yourself – seems a virtual prerequisite for living, or at least living happily, in L.A.

If Nathanael West lived in today's L.A., he'd have plenty of fodder for an even more appalled sequel to "Locust." The only meaningful difference between West's Los Angeles and Los Angeles today is the traffic is about 1,000 times worse, there are thousands more plastic surgeons and wanna-be starlets/prostitutes, the Black Dahlia has become O.J., and Homer Simpson has transformed from a well-drawn, sad character in a classic novel into a literally drawn, funny character in a Fox cartoon series. 

Essentially, "La La Land" hasn't changed much since "The Day of the Locust." It remains a sometimes magical place, where, still, nothing feels quite real.