Bad Post

February 10, 2009

So, it's been a few weeks since I blogged. I apologize for my absence. My goal to blog twice a week has turned into once a week. Unfortunately, I haven't even kept that commitment. I've been focused on work and retaining my job in this ludicrously harsh economy. You see, the salary is nice and necessary but the health insurance is essential. Without health insurance, I would be completely broke within a few months.

Let me dimensionalize this for you. Life sustaining dialysis costs over $10K a week and in the past year, I've rolled up about $800K in medical costs when you include surgeries and hospitalizations. Most dialysis patients average two hospitalizations every year. So, this is pretty common for my situation and for the foreseeable future. When you routinely rip open bills that have a $60K bottom line that say "not covered," well...you shit yourself. Then you spend hours on the phone with your insurance company who routinely tests your mettle and will to live with a ticker tape parade's worth of bureaucratic paperwork. It's a freaking part time job keeping them paying, getting approval for meds, etc.

Here's the secret. Insurance companies don't make it easy for you, not because they're grossly incompetent, as is the widely held view. No, it is because they would prefer that you die. At a minimum, they want you to give up trying to get them to reimburse. At best, they want to pass the expense along to someone else, preferably the government, your employer, the doctor, the medical facility, and especially you. Why aren't health insurance companies more efficient? Because there is no monetary incentive in it. There's no profit in streamlining the process. Make no mistake, the vast majority of health insurance companies are profitable.

Why do I tell you this? Why tell you that I'm working for the health insurance, how I'd be completely screwed without it, and then bash it like an electronics store window in a riot? It's simple; the system is broken and must change to benefit ALL of us. I don't like being a drain on the medical system and the economy, but I know something you most likely don't. It's only a matter of time and circumstance before you end up in my shoes, or worse, in some uninsured person's shoes. It's a part of the human condition, living a mortal life. Despite what you tell yourself, you will grow old (if you’re lucky), suffer an unspecified amount and die. It's all much closer than you think.

I urge you to hold President Obama and your local senators and representatives accountable for their campaign promises. The medical system must change. Your life and dignity depend on it.

Good Post

February 10, 2009

It was my birthday last Friday. I’ve never been a big birthday celebrator. I know some folks revel in the attention and turn their birthdays into weeklong celebrations. However, I never enjoyed the attention. That’s odd, isn’t it? This comes from a guy who devoted twelve years of his life to acting. Everyone knows actors are yin-yang swirls of raw, untenderized insecurity and mammoth delusional ego. The only way I can explain this contradiction is that the attention I received as an actor was always for playing a role or inhabiting a character. I’m actually fairly shy in my Jon persona. Every year on my birthday, I slink into the background and pretend it is like any other day until the queasiness passes.

However, this year was different. This birthday had the effervescence and sweetness of warm spun cotton candy. What changed? Friends, there were a couple of times last year when it wasn’t a gimmie that I’d have another birthday. Sheesh, that sounds melodramatic, doesn’t it? The truth is I spent a fair amount of time in the hospital. Between dealing with kidney failure and then later discovering a giant blood clot that spanned from my right jugular to my elbow, there were a couple of times...let’s just say it was more serious than my wife and I let on to friends and family. It’s such a cliché, but there’s nothing like a little glimpse into the abyss to make you appreciate life. So, I’m very happy to celebrate a birthday and grow older. It feels damn good.

Organ Trafficking (not the fun kind)

January 19, 2009

It is Martin Luther King Day. He is a personal hero of mine. I can't watch his "I have a dream" speech without getting electric shivers and wet eyes. It is also one day before the inauguration of President-elect Barack Obama. The historical significance is not lost on any of us. Change is palpable. It is as if a stranglet has escaped the Large Hadron Collider and is spinning, infecting and consuming all rational matter. It's damned exciting. I made my satellite-high expectations clear for Mr. Obama's speech in my last blog. We're all waiting for the national policy, health care, and economic reforms to come. However, I'd like to appeal for one more change.

America must stop all illegal organ trafficking.

Not the change you expected me to appeal for? In Newsweek on January 10th, Janeen Interlandi reported in her story "Not Just Urban Legend" that human organ trafficking has made its way to the U.S. of A. It's a very informative article and I highly recommend you read it just for the horror factor.

I'm just going to cut right to the chase. There is severe tension in the system. As of 3:28 PM EST, there are 78, 197 people on the kidney transplant waiting list. In many parts of the U.S., the wait for a cadaveric kidney can be up to 10 years with a national median waiting time close to six years. The average patient on dialysis lives 5-7 years. Not very promising. Add to this the fact that a donation from a living person can extend the life of a transplanted kidney from 11 years to 19 years. This creates all the conditions for a thriving black market. Indeed, that's what happening. What's shocking is that some surgeons and transplant centers are pretending not to notice and do not ask questions a when a living donor emerges from thin air and doesn't speak English. I can tell you from personal experience that transplant centers review donor candidates rigorously. So, to turn a blind eye is deliberate. Why on earth would they do this? It is simple really; no one wants to see someone die waiting for an organ transplant.

The ethics here are complicated and not as black and white as they might appear. The basic question is...what would you do to stay alive? Especially if you have the means to pay. Is this fair to those that don't have the means? In contrast, if you are desperately poor and have no hope to improve the life of your family, what do you do? The world endlessly debates the right for people to treat their bodies as commodities without resolution. I must remind you that I am just at the beginning of this journey so I can't pretend to know the abject desperation a person must feel as their life dwindles away waiting for a transplant. I also live in a rich country. I have no idea what it is like to go hungry or have little hope for the future. However, I think it is important to take a stand based on my personal ethics.

Here it is: organ trafficking is evil and repugnant. I would rather die than deprive another person of their opportunity for life. I would rather die than exploit another who has no alternative means.

You see, I also have a dream. I have a dream that the world will wake up and the rich and poor will be treated equally. I have a dream that people will sign up to be donors in order to make sense of what could be senseless waste. I have a dream that healthy and generous heroes exist and will continue to give the gift of life. I have the dream that you will join me and sign up to be donor at http://www.donatelife.net/.

As for me, I will wait for my turn and hope to live.

Words Matter. Context Matters More.

January 14, 2009

I admit it, I have high expectations. When Barack Obama takes the oath of office next week and gives his inaugural address, I expect oratory fireworks. I expect words that spark and pulse and burn hot across the curtain of history, setting the damn thing afire. I expect to oooh and ahhh and let the embers slow fade into my memory. This occasion demands greatness and so do the people.

Narrative has a fascinating article called, "First Words: The Best and Worst of Inaugural Speeches." It's ironic and prescient. I highly encourage you to take a look. Just a taste:

George H. W. Bush, January 20, 1989

There are times when the future seems thick as a fog; you sit and wait, hoping the mists will lift and reveal the right path. But this is a time when the future seems a door you can walk right through into a room called tomorrow.

...and apparently a recession and the first gulf war

George W. Bush, January 20, 2001

We will build our defenses beyond challenge, lest weakness invite challenge. We will confront weapons of mass destruction, so that a new century is spared new horrors.

...he told us his agenda in the first few lines of his inauguration.

Words matter, folks. They really do. However, using beautiful or powerful words out of context just makes you a jackass. This brings me to Rod Blagojevich, the soon to be ex-governor of Illinois.

Literary Douchebag of the Week

Allow me to rant here. This Chia Pet-haired and clay-brained doofus did the world of poetry no favors this week. After the Illinois senate voted to impeach him, he held a press conference. The content of the press conference was laugh-out-loud ridiculous. But he really pissed me off, when at the end of the press conference, he delivered his parting shot. He quoted the classic poem Ulysses by Alfred Lord Tennyson. He took the ending of the poem out of context and used it as a defiant rallying cry for his continued fight against his usurpers. Disgraceful.

If you haven't read this poem, you should. It's amazing and you will immediately find it familiar. In the context of the poem, Ulysses is near the end of his life. He finds ruling tedious and recognizes that his skills are a poor fit for the job. He proudly passes his kingdom on to his son, Telemachus. Ulysses is wistful and reminiscent of his times as hero. He rails against the indignity of old age and death. He craves to set sail for one final adventure with old friends. How is that for a little context? It's certainly not a rallying cry for an embittered and corrupt public official. I guess co-opting a classic poem is small change for a man who'd sell a senate seat to the highest bidder.

Just a warning, poetry is not a cloak of invisibility that you can hide behind. Poetry is an invisible cloak that reveals what's within.

Poetry Sucks!

January 5, 2009

Does the video below reflect your opinion of poetry?

Ah, the slow motion raspberry. I bet many of you found this little video to be vastly more entertaining than a poem. Former Poet Laureate Ted Kooser writes in his book "The Poetry Home Repair Manual" that "of every one hundred readers of The New Yorker, ninety-nine prefer the cartoon over the poem." Sound familiar? I can feel you shaking your heads in agreement. Why is this? And as a poet, why on earth would I bring this to your attention?

There are many long-winded arguments, erudite laments, and detailed analyses of the "state of poetry," but I think it comes down to this...ninety-nine percent of you are stupid.

No. Wait. That can't be right. (insert winking smiley face here)

Serioiusly, how many times have you read a poem and said to yourself, "I don't get it," or "what the hell does this mean?" Does the word "Poetry" give you a flashback to high school and some dreaded English teacher droning on about a symbolism and the art of interpretation? The truth is that reading poetry is too much damn work for most people. There are many faster and transparent ways to communicate experience.

The problem is that poets forget about audience. They write to themselves or for the benefit of other poets. Don't get me wrong, there are a few folks out there who pride themselves on their ability to get to the core idea of a poem no matter how difficult it is. However, I'm here to tell you that a poem shouldn't be a puzzle. Good poetry is not designed to make you feel stupid. Does this mean I believe poets should dumb down their work? Of course not. I'm just advocating that poets need to work a little harder to meet the reader half-way.

The best poems offer an alchemy of intimacy between the reader and the poet. Let me explain. It's like cooking. How many times have you followed a recipe to the letter? If you are like most people, not very often. If you're making roast chicken, you may modify any number of ingredients based on your preferences, dietary needs and life experience. You may reduce the salt, use fresh rosemary and lemon thyme, cook the bird upright on a beer can or with root vegetables and other aromatics...it's up to you. At the end you'll still have roast chicken, but it will reflect a combination of the recipe, your experiences and choices.

In the right circumstances, the poet's carefully chosen words combine with the reader's experience and imagination. This creates a unique experience that reflects nuances of the human condition and complex emotions that are hard to replicate in other art forms. A good poem that connects with a reader can change their perception forever.

Here's a good example of a beautiful short poem by former U.S. Poet Laureate and Pulitzer Prize winner Mark Strand. It's called "The Prediction." I think this poem is accessible yet very rich and reflective. Enjoy.

Do you hate poetry? Let me know what you think.

Personal Archeology

December 16th, 2008

I've been doing some excavation. I've been digging into my old works. Why would I do this? I can safely identify a couple of reasons. One: pure morbid curiosity. I've been writing since I was fourteen. I wanted to see if I could discern the original spark of talent that I was so convinced I had. Two: I wondered what it was like for me before I knew I had kidney disease. Was I a less serious person? Was I blissfully happy? I was diagnosed with kidney disease in 1986 at the age of nineteen. So, I had about a five year window when I was writing to see what my life was like before.

So what did I learn? It's complicated. I learned the Jon of twenty-five years ago is an absolute stranger. I have memories like anyone else, but they seem to be from someone else's life. I know that sounds odd, but I am convinced I wouldn't recognize my teen self on the street. As for this idea I may have been "happier" when I was younger or before I knew I had kidney disease, that didn't turn out to be true. Not at all. Look at the poem on the right. It is a fairly straightforward poem that chronicles what it's like to be in the process of growing up. In my case, way up. The language choices in the poem reveal that my internal processes were not without a flare of adolescent ennui and drama.

While this younger Jon may feel like a stranger, we have more in common than I thought. We both have a flair for the dramatic. We both write to help ourselves unscramble our feelings. We both feel like we are "in progress" and growing. Today, I am in the middle of this end stage renal disease to transplant journey. My pain is mostly physical rather than emotional. However the situation has given me the opportunity to imagine, much like when I was younger, what my life will be like "after." I feel much like I did when I was younger that I have the unique opportunity to invent myself (or in reality re-invent myself). I feel there are new possibilities ahead. I feel my life has untapped potential. However, there is one significant difference between me and my younger self. Thoughts of the future and what I might become made the young Jon quite anxious. Most surprisingly, today, I am hopeful.

I've posted a couple older pieces of work on my website http://www.joneseaman.com/. "Inheritance" is a poem and "Absolute Zero" is a short story. I wrote both over twenty years ago. I think these pieces show where I came from and how far I've travelled. Perhaps they even reveal that raw spark of mythical talent as well.

Poet or Patient? Curious Readers Want to Know.

December 4, 2008

The short answer is poet, first and always. However, it took this nasty confrontation with my mortality to spur me to action.

Today I do want to write about being a patient. Many kind folks have emailed me or signed up for the newsletter. The question folks ask repeatedly is "Why did your kidneys fail?" As you can imagine, this is a sensitive topic. Most people are genuinely curious, but sometimes it feels like there is an accusation hiding beneath the polite layers of inquiry. In fact, a few people have even bluntly asked, "What did you do to make your kidneys fail?"

First, I assure you that my kidneys did not fail because of some moral weakness or divine retribution. The damage did not come from alcohol addiction or drug abuse, drinking the water in third world countries, unprotected sex, over the counter pain medication or too many cups of coffee. Lastly, my kidneys did not fail because I struggled with obesity for a time. However, that word "failure" is powerful. Failure is personal and demands introspection and accountability. It carries a heavy aura and acrid bite. Sometime I feel its stench on me. How do I explain this? I have asked myself in quiet moments, "Am I defective in some crucial core way that makes me less worthy of life than someone else?" and "Do I deserve this?"

Here is my personal story, the short version. From the time I was a baby until I was three, I had recurring kidney infections. They discovered my ureters, the tubes that connect your kidneys to your bladder, were defective. This caused urine to reflux (backflow) into my kidneys. So, I had an operation to reimplant my ureters. The surgery worked - no more infections.

The rest of my childhood was healthy, as evidenced by my 6'8" frame and active mind and body. Then in college, at the age of 19, as a joke, I stuck my arm into a blood pressure cuff. My blood pressure was abnormally high. After a month of tests, we found that significant kidney damage was causing the high blood pressure (and vice-versa). This damage stemmed from the reflux I experienced as a small child. Unfortunately, kidney damage is a downhill race. The doctors told me that I would have 2 years until kidney failure. This was in 1986. I cannot explain how this affected me. You will have to read some of my poetry for insight. Suffice to say I felt very "temporary" about myself. This reality colored every aspect of my life.

How does this story end? My kidneys did fail...in March of 2008, beating the estimate by 20 years. You see, I took charge of my life at 19 and went on high blood pressure medication. I followed a diet based on the best medical evidence at the time. I monitored my condition with doctors regularly.

Now when I look deep inside and ask myself if I am a "failure," I smile and say, "Hell no!" I am a success story.

Discoveries

11/19/2008

I'm kind of a science nut. I'm curious about everything. My mind is hungry for the "new." I'm enthralled by anything that peels away the layers of what's visible to reveal the workings of the invisible beneath. I'm equally fascinated by knowledge that expands my field of vision beyond the narrowcast of our daily lives. So, last week when the story broke that astronomers had taken the first pictures of planets outside of our solar system, I totally geeked out. Invest a couple of seconds in this NASA video and see what you think.



A little dry for you? This quote from the LA Times put the accomplishment in a perspective that fired my imagination. "Scientists compared the imaging of these so-called exoplanets to taking a picture from Los Angeles of a firefly buzzing around a searchlight in New York." Creates an image doesn't it. For the full article, click http://www.latimes.com/news/science/la-sci-planets14-2008nov14,0,435832.story

How does all this relate to poetry? Obviously it is source material and inspiration. Poetry uses heightened language to explore our relationships with both the intimate and vast. Poetry illuminates shared experiences and unexpected interconnections. When done well, poetry has a visceral emotional impact. Here's a link to "Astronomy Lesson" a poem by Alan Shapiro. I admire the accessibility, intimacy and relationships in the poem as it contemplates the ordinary and the infinite space between. http://www.poetryfoundation.org/archive/poem.html?id=171394

As for my own work inspired by this discovery, stay tuned.

Revisions

11/14/2008

I continue to work on my first book of poems called "The Skeleton Watch." My goal is to have fifty polished poems ready to go by December 31. I am well on my way to that goal. Central to the work are a few core poems that are gateways into the theme and act as connectors to bring everything together. Last night as I was working on one of these poems, when I realized how intensely personal and intimate these core pieces are and how very difficult they have been for me to write. Let me see if I can explain.

I used to be a professionally trained actor. One of the classic dilemmas my actor friends and I loved to talk about was nude scenes. Would you do a nude scene? What are the specific circumstances where you would be willing to be nude on stage or film? It is a fun gut check where you place your desire for fame, artistic integrity, and morals in a thought blender. The resulting goo was always predictable. The "serious" actors among us would end up with the predictable conclusion, "only, if it is in service of the story." That's a nice and noble answer. The play's the thing, after all. However, it is bullshit. Here what is really behind the nudity question; are you willing to make the most private part of yourself public? Should you? If you do that, what is left that truly belongs only to you? Perhaps most importantly how will people respond? There is nothing more terrifying than exposing yourself and facing rejection, derision or worse apathy.

On the other side of the equation, we have all experienced a moment where someone crosses this line and "over shares." This usually happens with a person who you don't know very well, in a drunken moment, in a public setting and for some reason you can't escape. You just have to sit there and squirm.

Back to poetry. Yes, poetry itself can be a very personal and intimate art form. Unfortunately, poetry can also be a squirm worthy over share. There is certainly a fine line. These core poems in my book are definitely a step beyond my comfort level. They are risky. They express things that I don't talk about at all, with anyone, ever. What I hope is that the construction, the art of the words, the unique expression, earns the intimacy of the reader. I am naked here. Exposing the inner workings. Wish me luck.

Poetry and the Battle Against Cognitive Decline

11/10/2008

This is a risky thing to admit in a blog, but I am experiencing cognitive decline. Sounds melodramatic doesn't it? Unfortunately, this is one of the well-known side effects of chronic kidney disease and dialysis. I have to be honest. I am experiencing this daily. For example, I have found that my ability to concentrate has diminished. My memory is no longer as crisp as a cold Fuji apple. Sometimes specific words I am looking for vanish in a curl of vapor just before materializing on the tip of my tongue. The worst and most frustrating aspect is that my ability to make connections quickly is gone.

Think of it like this; imagine you are an excellent jazz pianist. You have internalized the music and instrument. When you play the music just flows from your fingertips. You easily touch ether without the burden of consciously calculating every note Now imagine you are forced to play with ski gloves. Not only would it blunt your speed and technique, but you would have to rethink nearly every single aspect of how you play.

That is how I feel. Often time for me poems would "appear," translate themselves from the invisible and appear on the page in just a few minutes. Now I find that a similar poem takes four or five hours to make its way to the page. In addition, when it arrives, it does not just need a little polish, everything is askew. It is not as if I missed a button on my shirt. It is more like the buttons are too large for the holes. It's damn defective. The meters all fucked up, god-awful cliches stare at me, and somehow the central threads of emotion are unraveled. This makes me unbelievably angry. Often times in the revisions poems take a much darker tone than I originally intended. I know this is not unique. I think back on other artists who have experience illness. It manifests itself in the work. How could it not?

What keeps me going? Pure stubbornness mixed with shot glass full of hope. I write poetry despite the frustrations because I simply must. What helps me play through the ski gloves is the fact that with a kidney transplant my cognitive ability could return. There is hope. Check it out.

http://www.transplantliving.org/community/news.aspx?id=1171