One Year Later -- A Kidney Transplant Anniversary

May 10, 2011

One year ago at this moment I was waking up in the recovery room after receiving a kidney transplant.   I still can't believe it actually happened.  After all the dialysis and struggle, I received a kidney from an anonymous living donor.  Yes, this is as humbling and amazing as it sounds.  You can read my previous blogs and Don Colburn's Oregonian articles for the full story behind my unique experience.

It's been the fastest moving and most joyful year of my life. I've seen my wife smile for the first time since my kidneys failed. I've met my donor and her family. We've developed a beautiful and unexpected friendship with them. I've had the privilege to leave behind the food and fluid restrictions that come with chronic kidney disease and indulge myself. Oh, the simple pleasures like chicken soup, strawberries, and beer. So much delicious beer. Thank you Portland!

I've had terrific success with my poetry. I won a few contests and was lucky enough to have a poem published in a journal right next to the work of former U.S. Poet Laureate Ted Kooser.  I've also had great professional success. I've taken a new job as the brand manager with a healthcare technology start up founded by Intel and GE called Care Innovations. This allows me to continue my mission to advocate for healthcare reform and new models of care for all of us. Even with all those changes, I've managed to take a vacation for the first time in years. The pictures in this blog are from Maui where Tracey and I ziplined atop the trees and over the canyons. This serves as a pretty good metaphor for my life this year.

Still, I continue to think of those who wait endlessly for transplants and struggle to live a day longer. I brood over the idea that Medicare, which served me well and is so important to our seniors, is under political attack. I lament the widening gap between rich and poor. I ask myself why I can't do more to help. Most regrettably, I find myself returning to old, bad habits, obsessing with work and not communicating often enough with the friends and family I love so much.

Mostly I just feel lucky as hell that I get a chance to keep learning and trying to be a better person. Thank you, Brenda Hanson for this opportunity. I promise to keep zipping above the trees and canyons for as long as I can.

10 Astounding Facts About Jon's Kidney Transplant

May 27, 2010

After a lifetime of chronic kidney disease, kidney failure and 26 months of dialysis, I received a life saving kidney transplant on May 10, 2010.   

This amazing opportunity for me to live a second life is all due to the generosity of an anonymous living donor.  Anonymous living donor!?!  Yes, this is as extraordinary as it sounds.

Here  are 10 astounding facts to help you understand the rarity and true selflessess of this living donor.

1. There are an estimated 16,000 kidney transplants in the U.S. each year.  The vast majority of kidneys come from deceased donors.  Around 6,000 living donors direct their kidney to a family member or friend.  
2. Only 100 or so donations come from anonymous altruistic living donors. 
3. I am only the 7th person in Oregon history to receive a kidney this way.
4. The donor kidney matched me in 3 out 6 tested antigens.  This is the same number as if a parent had donated to me.  Direct siblings only have a 1 in 4 chance of matching 6 of 6 antigens.  The national average matching number of antigens is 1.78.
5. The two programs in Oregon who accept anonymous donations from the the Pacific Northwest Transplant Bank (PNTB) alternate.  Lucky for me, it was my program's (Legacy Transplant Services at Good Sam) turn.
6. There were 5 deceased donor kidney transplants in the 48 hours before they called me in, clearing the way for me to pop to the top of the list.
7. One person turned down the kidney before it was offered to me.  Why?  I will never know, but always wonder.
8. Every effort continues to be made to protect the donor and my identities. All I know about the donor is that "she" is about my age.  I also was able to glean from the docs that she's 5'6" or less and her kidney was big and healthy.  This was fortunate because I'm a big guy at 6'7" and 220 pounds!
9. The donor coordinators, nurses, doctors, pharmacists, surgeons and staff of Legacy Transplant Services and Good Sam have been consumate professionals.  I continue to receive the very best care imaginable.
10. According the the surgeon and observers, my operation was textbook perfect.  As soon as the donor kidney was attached to my blood supply, it "pinked up" and "peed" right on the spot. 
11. Bonus fact:  The picture on the right is an ultrasound of my new kidney given to me by the Good Sam ultrasound techs.  Their enthusiasm helped make my hospital recovery time fly by. 

Obviously, I am tearful, beyond grateful, overwhelmed and humbled by this gift.  I am putting together a thank you to explain to the donor my appreciation and the impact the new kidney has on me, my wife, family, friends, co-workers, and fellow poets.  My life has literally been saved and my life expectancy doubled.  My donor is my hero. 

I've expressed to the donor coordinator that I am a healthcare activist, I publish a blog, have a website and do not have any further expectations that my identity be kept a secret from the donor.  So in essence with this blog, I am coming out.   However, I have ultimate respect for the anonymity of my donor and no expectation that this person will ever reveal her identity.  I just want to honor her gift by living a good and productive life and when possible, give back to others.

That said, there are some more facts you should know:

As of 8:17 p.m. this evening, there are 85,223 people on the kidney transplant waiting list.  To date in 2010, there have been 4,282 transplants.  Of those transplants, 3,258 came from deceased donors and 1,024 from living donors.  Each day, 77 people receive the gift of life with an organ transplant.  Some people wait up to 7 years for their transplant. 19 people die each day waiting.** 

It is estimated that a kidney transplant has a postive impact of improving the life of up to 50 people.  Are you an organ donor?  Have you considered becoming a donor?  Learn more:  http://www.donatelifenw.com/

Have you ever dreamed of saving a life?   Does the idea of becoming an anonymous living donor intrigue you?   There is no greater or more selfless gift.  Learn more:  http://www.pntb.org/aldp.html 

**Data sources http://www.unos.org/data/ and http://organdonor.gov/

Organ Donation No Longer a "Pre-Existing Condition"

March 26, 2010

There is a horrible little secret in the organ donation world.   Insurance companies often punish living donors.  What?!  That's right they deemed organ donation a "pre-existing" condition.  What makes me queasy is that on one hand the transplant's recipient insurance company would pay the all the donor's hospital expenses and even travel costs.  On the other hand, the donor is screwed for their charitable act by their own insurance company or when applying for a new policy.

The true idiocy of this insurance practice is that only the healthiest people are ever allowed to donate.  Studies of living donors show it is very rare to experience any long-term adverse affects.  Some good news folks, the "pre-existing conditions" provision in the new health care reform law stops this practice.   

There's another great benefit.  The new law eliminates annual and lifetime service caps.  This helps folks with lifelong disabilities, chronic illnesses like kidney disease and cancer and people who experience any catastrophic health condition.  This will save hundreds of thousands of people from bankruptcy and despair.

There's one critical area of Medicare that heath care reform did not address concerning organ donation.  Medicare covers organ transplants, but only covers anti-rejection medications for 36 months.   Most transplanted organs last over ten years.  Anti-rejections meds run over a thousand dollars a month.  This puts the poor and people on fixed incomes in a horrible situation.  The ability to pay for anti-rejection medications can disqualify a person from ever getting a transplant. They get stuck on dialysis which is much more expensive in the long term than a transplant and medication.   It doesn't make much sense, does it?  There's was a great story in the Oregonian about a young mother in this very situation.  Click the link below to see the creative way her friends are helping her overcome this issue.  Hint: it involves wine.  Unfortunately, it's not an idea that scales to help everyone, but it is what we should expect until the issue is addressed.  That said, it has been a good week for change we can believe in.
http://blog.oregonlive.com/nwheadlines/2010/03/todays_headlines_wine-for-kidn.html

Open Letter to Senator Ron Wyden

December 17, 2009 --



Senator Wyden,

I voted for you and I'm very proud of your record and tireless work to reform healthcare insurance for all Americans. You are the real deal.

I urge you not to accept or support the Senate's healthcare bill in its current form.

Without offering an alternative to "for profit" health insurance the bill will fail Oregonians and all Americans. Available statistics show that "For Profit" health insurance is strangling the life out of our country. The reforms proposed in the Senate's bill will help, but without a "not for profit" healthcare alternative they will fall short. At every turn the "for profit" healthcare insurance industry chooses profit over people. Isn’t this antithetical to our American values? The Constitution of the United States begins “We the People…” not “We the Shareholders.”

Senator Wyden, I know firsthand what it is like to be held hostage by the healthcare insurance industry. As a 42 year old dialysis patient and kidney transplant candidate, I live with the financial burdens and pressures of managing a chronic illness through all the perils of our healthcare system. Daily life requires an extraordinary force of will. In fact, I am one of the only 23% of those with kidney failure who works full time in order to maintain my health insurance and get a second chance at life. However, through all my difficulties, I am not the person in need here.

The uninsured, uninsurable and the under-insured need your continued help.

Most of us have moved beyond hoping for a single-payer, non-profit system. However, expanding Medicare to cover more Americans is a brilliant idea. As a person with kidney failure, I am fortunate because I am allowed to enroll in Medicare. Because I work, Medicare is my secondary insurance and serves as a critical fallback that saves my family from desperation and poverty. Though the Medicare system is not perfect, it is superior to any proposed alternatives.

It just makes sense good to build on the Medicare infrastructure that is in place and works today. I urge you not to compromise on this key reform.

I also do what I can to help by advocating for healthcare reform with my blog. You can see this letter to you posted there (http://www.joneseaman.blogspot.com/). Of course my blog has a special focus on kidney disease, dialysis, and organ transplants. I sincerely hope that you are a registered donor and that I can continue to laud your achievements on my blog and support your reelection.

I greatly appreciate your service to Oregon and the United States of America.

Sincerely,
Jon E. Seaman

Jon Must Have Been High

December 9, 2009 --

The first year after I graduated college was brutal. The George Bush Sr. recession of the early 90s withered the economy. It wasn't a happy time for young people. If you don't remember what it was like, just think of the angry grunge music that replaced pop music and glam rock. Jobs for graduates were scarce. I felt like everything I'd been promised my whole life (work hard + college degree = good job) was a farce. Between acting gigs and contemplating grad school, I accumulated substantial debt and looked for a real job. To scrape by, I worked as a bouncer, a substitute teacher, a sheet rocker and and jewelery salesman. None of these jobs offered health insurance. I remember I thought I could get by for bit without it. I suffered from the same delusion of invincibility as today's 20 somethings. This is despite an early diagnosis of kidney disease I received in college (when I had insurance). I felt like I was on top of it with inexpensive high-blood pressure meds.

Then I blew out my knee playing basketball. It swelled as large as a truck tire and I couldn't walk. I had no money or insurance, so I delayed treatment and hoped it would just go away. No luck. After a week I dragged myself to the emergency room. For a $1000 bucks, money I didn't have and that added to my debt, they X-rayed me, drained the knee, and injected it with cortisone. I had a medial collateral ligament tear and needed surgery. The doctor recommended I see a specialist and a surgeon. When I explained I didn't have health insurance, he shrugged and gave me some steroids to keep the inflammation down and said, "good luck."

I did not get the surgery. Once I did get health insurance several years later I ended up going to rehab three separate times because my knee didn't heal correctly. Go figure. A few years ago I got an MRI that showed as a result for not getting proper treatment, I have degenerative arthritis in my knee. To this day I have a slight limp and chronic pain.

Moral of my story?

• Jon is stupid and was probably high
• Being poor and in debt sucks
• Working temp, part-time work, or for small biz usually means no insurance
• 20 somethings don't understand the need for health insurance
• Ignoring an injury or medical condition leads to life-long problems and lower quality of life

Often we think of the uninsured as chronically ill people who are refused coverage. This is only part of the story. If you want all the facts please visit, http://www.covertheuninsured.org/. It's a detailed site that uses non-partisan studies from the Robert Wood-Johnson foundation to give you the straight dope. It's worth a scan. Know the facts. One thing that drives me crazy is the assumption that people who don't have health insurance are lazy welfare seekers. Not true, see below.

As the senate does it's back-room deals, don't let them forget about young people. If they extend Medicare and compromise on other alternatives to for-profit health care insurance, they must not do it with their normal superficial ass covering. We need real solutions to help all uninsured people.

The Poetry of Progress; a Thanksgiving Story

November 20, 2009

I had no idea this familiar poem had anything to do with Thanksgiving. I love Thanksgiving. I'm the pie guy in the family. It's a pleasure to cook a pumpkin pie and a pecan pie for the holiday. The last few years, the pies have even been edible! What is not so tasty is that I'm not good at giving actual thanks. In the spirit of the holiday, let me give it a shot.

When I started this crazy poetry obsession, I had no credits to my name. Heck, I had no name. There came a point where my blah, blah, blah about poetry seemed to bouncing off brick walls creating quite the echo chamber. So, I went on a self-imposed quiet period.

The quiet period is over. What a difference six months make. I've won several awards, local and national. I've been published and accepted for publication in some respectable journals. I am no longer creditless.

Most importantly, I've found a supportive Oregon poetry community. I joined the Oregon State Poetry Association and had the pleasure of attending two of their conferences and meeting some of the region's best poets.

I'm part of a group called the "Tall Poets Society" with award winning poets Steve Williams and Shawn Sorensen (we're all over 6'5"). The camaraderie has been wonderful and they've been very thoughtful in providing feedback on my work. Their great work has also inspired me.

When I was stuck with a bit of writer's block this fall, the very talented poet Constance Hall was kind enough to give me some encouragement and advice.

After seeing my work, a very generous Fran Turney sent me a classic book on Hiroshima. She also showed my poems "Japan 1944" and "Hanford" to Lawson Inada, the Poet Laureate of Oregon. This is especially meaningful for me because of his experiences in a U.S. Japanese internment camp.

Sandy Didner, a college professor in Florida, read my poem "Time and Fates of Man" and asked if she could teach it to her students. I also had the pleasure of offering encouragement and advice to a couple of young, talented kids whose creativity gives hope for our future.

My wife Tracey, who really isn't a huge poetry fan, puts up with a lot. She reads my poems, many times under protest. She helps me put together contest entries. She also endures more of my non-stop blah, blah, blah about poetry than you could imagine.

I need to stop myself. I just realized I did not actually say "thank you" to any of the people listed above. I just bragged about myself, again. Horrifying! I told you, I'm not very good at this thanking thing. One more time...

Thank you, everyone, for your kindness and support. Thank you for reading. You've enriched my life and work. You've made everything taste as good as pumpkin and pecan pies. I hope your Thanksgiving is as happy you've made mine.

Names of the Dead

November 6, 2009

If you haven't heard, there's a huge vote in the next few days on the Healthcare Bill before the House of Representatives. The voting will likely follow strict party affiliation. Most Democrats will vote "Yea" while ALL Republicans will vote "Nay." When it comes to healthcare, my affiliation is very clear. I belong to the Human party.

What is the heck is the "Human" party? Quite simply: I choose people over political parties. I choose the rights of people over the rights of corporations. I choose to support the disadvantaged and the handicapped so that they will be able to help themselves. I choose to support healthcare as a basic human right and believe that healthcare for all is the new hallmark of truly great civilizations. Why? Because I know that every human being that has ever lived and lives now will grow sick or suffer injury and die. The only variation in that equation is length of suffering. This is the one experience we all share regardless of century, sex, race, religion, nationality and politics.

I support this bill. I know it is not perfect. I know that many of the proposed changes will not satisfy anyone due to cost, coverage and ideological beliefs. This includes my own belief that the only logical solution to healthcare is a single payer system. I support this bill because it is a start. We desperately need a start here in America. As the most advanced civilizations around the world have proved, universal healthcare does not cause the fabric of the universe to unravel, turn the people into slaves or make them fascism victims. Universal healthcare simply improves the quality of the lives of everyone, not just the rich or fortunate.

I think the seriousness of the issue is best shown on the site namesofthedead.com. Democratic House Member Alan Grayson sponsors it. The site gives voice to those people who have perished because of no health care insurance. You might not care for the politics behind the site, but the data comes from a study by authors from the Department of Medicine at the Cambridge Health Alliance, affiliated with Harvard Medical School. Click here to read a .pdf of the report for yourself. The conclusion: Every year 44,000 people die because of lack of health insurance. That's more than from kidney disease (42,000+), the root of my own advocacy. A just released John's Hopkins study shows that a lack of health care and insurance contributed to the deaths of 17,000 hospitalized children in the last 18 years.

More people die from lack of health care insurance every day than from automobile accidents and homicides combined. The consequences here are very real and demand we take action, imperfect or not, to make immediate improvements to our barbaric system.

I know most of you already have health insurance. However, instead of considering this a numerical or anonymous issue that doesn't affect you, I encourage you to spend five minutes to read some of the stories on namesofthedead.com. It will help you understand the true costs beyond dollars and statistics.

I was shocked to find the name and story of Theron Read from Salt Lake City. Theron was 44 when he died on a light rail train from a heart attack in late July. He, like me, was an actor and a poet. Theron had a pre-existing heart condition and worked for a small business that did not offer health insurance. He, unlike me, did not qualify for Medicare. Why kidney failure is covered and heart conditions are not points to the ludicrous labyrinth of the system. Theron made very little money and could not qualify for nor afford health insurance. He did not have the money to cover the costs of managing his chronic illness or pay for needed medications. He did the best he could with what he had and died needlessly before his time.

I knew Theron. We traveled the same circles and even did a show together in the 80's. He was gentle and kind, quirky and funny. Regardless of economic circumstances, Theron’s family, friends, and the larger community of writers, actors, and musicians in Salt Lake City loved and valued him. I am very sad to hear of his passing and the circumstances behind it.

My friends, healthcare reform is very real check on your morals and values. What do you believe and stand for? Have you thought about it? I have. I believe in humanity. I believe in optimism rather than pessimism, hope rather than despair, learning in place of dogma, truth over ignorance, tolerance in place of fear, and compassion over selfishness. I believe in the fullest realization of the best and noblest that we are capable of as human beings (thank you, Paul Kurtz). I condemn violence, the "I got mine so fuck you" crowd, and greed without purpose.

Please contact your local Representatives and Senators. Ask them to vote for healthcare reform. They won't do it, if you don't demand it.

Neutral Analysis of Obama's Health Care Reform

September 15, 2009

People do care about health care reform! I've heard from many of you over the past week. One of the best emails I received is from Robert Vizza a brilliant marketing strategist and former work colleague. He's sent the following note:

I hope this email finds you well, enjoying the remainder of summer. I had the week off and decided to spend a few days looking at the health care reform issue because 1) I was fed up not knowing what was going on with such an important topic, 2) I was fed up with all of the sensationalist sound bites coming from both camps, and 3) I figured that you might be in a similar situation. By no means did I “complete” the analysis, but I do feel like I gathered some good information and have come away with an educated opinion on the topic. At the risk of offending all of my friends, I humbly submit my analysis to you with the hopes that you become more aware of the issue and, selfishly, educate me where I may have missed the point.

Enjoy,
Robert

While I'm sad that Robert spent some of his hard earned vacation time on writing a health care analysis, I'm happy to benefit from his hard work. Click the link below for a .pdf an easy-to-read analysis of some of the proposed reforms. "Boring?" Not at all. Robert is an excellent writer and he includes many interesting facts that you may not know. For a ten minute investment of your time, you can cut through the media and political rhetoric, and be better informed. My sincere thanks to Robert.

Silence = Death

September 8, 2009

It's diabolical, really. The people who most need healthcare reform are the least able to lobby for it. If you’ve been following my blog, it’s no secret that I have kidney failure. I work fulltime in order to have health insurance to pay for dialysis and, hopefully one day, a kidney transplant. You may have noted this is my first blog in several months. Why? For the same reason I have not paid my way in the healthcare reform debate; I have a limited bank of energy and truthfully, I’m overdrawn.

Speaking of “overdrawn,” please allow me to use a personal example of the absurdity of our current system. My dialysis provider charges my insurance $10,000 a week, or $520,000 a year for my treatments. For the exact same services, my dialysis provider charges a Medicare patient around $1,000 dollars a week, or $52,000 a year.

Did I lose you yet? That’s $520,000 versus $52,000 a year for the exact same services. Ten to freaking one? How can this be? In what universe does this make any sense?

What’s happening here is that the dialysis company doesn’t make profit from Medicare patients. They break even. Therefore, the 10x from my insurance company provides the profit and subsidizes the Medicare patients. Sound absurd? Why would my health insurance company tolerate this? They tolerate this because at the end of a 30 month “coordination period” they get to turf me to Medicare. With the average transplant waiting list time up to 5-7 years and transplant costs averaging $250,000, thirty months of being overcharged is almost equitable. See http://www.transplantliving.org/beforethetransplant/finance/costs.aspx.

Folks, this is how the system distributes the pain of critically ill people. They call this “cost shifting” and this is just one of a thousand examples that reveal the house of cards used to construct our health care system. Cost shifting hides the true cost of illness, creates billing hot potatoes, and, last of all, it still fails the uninsured, the poor, and the unlucky. What’s worse is that cost shifting causes insurance companies, doctors, pharmacies, etc to raise premiums, prices and service fees. The truth is you pay for Medicare and the uninsured regardless of what you think. The money hides as fat in your premiums and payments. Pundits and industry wonks constantly debate cost shifting and its relation to Medicare. Some companies who have figured out how to work the system to their advantage have hired economists to bust the myth of cost shifting or discount it as a very small problem. Here’s my one word response: bullshit. Cost-shifting is real and pervasive.

You may have missed a tidbit from my true-to-life example above. Yes, I am 42 and am on Medicare. Does this surprise you? In 1972, the Social Security Act extended Medicare to anyone with End Stage Renal Disease as long as they paid into the Social Security system. A public option does exist today. You just need to be a special case to get it before you are 65. Truthfully, isn’t everyone a special case? Legally, aren’t we all of equal value? A lackey from my dialysis center actively discouraged me from signing up for Medicare early. She said “the company” wouldn’t like it. I’m sure they wouldn’t - they’re like all other companies whose sole purpose is to maximize profits and return dividends to investors.

Why shouldn’t you have the opportunity to choose the public option? The public option seems to be very good at setting price ceilings and eliminating excessive profits. It incentivizes efficiency. Let me be clear, profit can be a good thing that spurs innovation. However, it needs to be above board and visible. Why do we allow medical finance to hide behind all these twists and turns?

Matt Tiabbi of Rolling Stone has an excellent article on the whole health care reform disaster, at http://www.rollingstone.com/politics/story/29988909/sick_and_wrong/1. He brings up the point that America has 1300 different insurance companies all with different billing procedures and policies. They estimate a single-payer system would eliminate 350 billion dollars of needless overhead. This is more than enough money to pay for healthcare reform.

Why are we allowing the House, Senate and President Obama to take the single-payer system and the public option off the table? There will be no true reform without both. You know and I know it. The time for silence is over. It’s time for the sick to rise up and speak before it’s too late.

Can you believe it? Sotomayor has Diabetes!

May 28, 2009


The standard confirmation process for a Supreme Court nominee is a spectacle akin to the original Scopes trial. Countless political blowhards line up to testify, grandstand and pound their cymbals (and symbols) together like mechanical monkeys. They ask leading questions designed to force nominees to take nation polarizing stands on abortion, gun control, freedom of speech...you name it. Every topic is fair game for inquisition and speculation.

That brings me to Judge Sotomayor's diabetes. Much to my surprise, it isn't the standard political pundits or right wing opposition bringing up her type 1 diabetes. Nope, it's the media. Just Google "Sotomayor Diabetes" and you'll pull breathless reporting from media giants - Time: "Sotomayor Diabetes: Will it be a handicap?" , the Wall Street Journal: "Should Sotomayor’s Diabetes Be Considered In the Nomination Process?" and the Associated Press: "Sotomayor's diabetes helps shape views on discrimination". I could go on for 150 Google search page results. It's ridiculous, but it's also reality. Ignorance creates fear and even better headlines. The AP reports:

"Diabetes renders the 54-year-old Sotomayor more susceptible to heart disease, blindness, nerve damage and kidney damage. An estimated 23 million Americans — 8 percent of the population — have diabetes, according to the American Diabetes Association."

Gasp! How terrible. Can she really be considered for the Supreme Court? How could it be? Is the Obama administration insane? Ready to puke yet? I am.

The good news? Sotomayor and the Obama camp addressed the issue head on. They also went a step beyond and used the issue to help educate the public on basic diabetes information. That's amazing and thoughtful. The Huffington Post has the substance of her press release, "Sotomayor's Doctor Says her Diabetes is a Non-Issue." CNN's headline really cracked me up, "Sotomayor's Diabetes: She Overcomes it Every Day." Well, of course she does. It's a chronic illness, for hell's sake. The AP article is at least smart enough to point out:

"If the Senate confirms Sotomayor, she won't be the only Supreme Court justice to cope with a significant health condition. Chief Justice John G. Roberts has suffered seizures. Justice Ruth Bader Ginsburg has survived bouts of colon and pancreatic cancer. Justice John Paul Stevens, who's 89, underwent radiation therapy for prostate cancer in 1992."

Again, welcome to life, the ultimate process of dying. So what's my angle on all this? I'm freaking delighted. No sarcasm intended. We need people in positions of power that represent more than fake political ideals. Sotomayor has a chronic illness that she's proactively managed with insulin injections and diet since she was eight years old. Hallelujah, a success story! I see the results of poorly managed diabetes in my dialysis clinic three times a week. I can tell you without reservation that Sotomayor is a real role model.

Will her experience with a chronic illness affect her judicial temperament and philosophy? I sure hope so. She's more likely to understand the issues, rights, and laws concerning health care. She's more likely to have a humane perspective. That's not guaranteed of course, but she'll at least have hard won experience. Health care, disability, discrimination, and privacy won't be esoteric legal exercises. Folks, if you haven't figured it out yet, health care is the number one issue of the twenty-first century.

Contest Results Prove it. I am Insane.

April 9, 2009

Some good news today. My poem "Hanford" won 1st place in a regional contest and publication in "Verseweavers." I won the prestigious "Poet's Choice" category. In a couple of weeks at their spring conference, the Oregon State Poetry Association will present me with a certificate and a check for a few shekels. I also get to read my poem to the attendees. This is the first contest I've entered since winning the Willamette Week "Smokin' Word" contest a few years ago. This is a very humbling and satisfying result.

What I really look forward to is meeting the other poets at the conference. Poetry in Oregon is a serious business. I've read the work of many local poets and the level of talent in this state is off the chart. It makes sense when you remember that Oregon poetry is the house that William Stafford built. I started writing seriously in June of last year. It's been very solitary. I realized a few months ago that to grow as a poet, I need to cultivate relationships with other poets and learn from them. Makes sense, no?

For those of you that don't know, I do most of my writing in dialysis. It's taken being pinned to a chair three times a week for four hours at a shot to eliminate the excuses for "not" writing. The process has been slow going. Dialysis isn't exactly gentle and every single minute the treatment progresses my mind slows, dulls, and finally thuds like a dove hitting a window. Let's just say I spend a lot of time in revisions. Honestly, I haven't been able to gauge if my work is any good. I'm often suspicious that I've accidentally hit my head on the diving board while jumping off the deep end. I took me until late February of this year to get the courage to submit my poems to contests and publications. I've asked myself on more than one occasion, "am I completely fucking insane?"

Just so you don't think I'm getting too full of myself, the news of the win came on a day that I received yet another rejection (one of many) from a publication I admire. I was very down, wondering if my words were just spinning in air, breaking up in the tornado. They probably are, but this is confirmation that at least I'm being blown in the right direction.

Click the pictures above to see comedy genius Marty Feldman's Myspace tribute page. It'll cheer you up.

Why Natalie Cole Sucks!

April 3, 2009


Natalie Cole was on Larry King Live this week discussing her kidney failure and pitching the general public for an organ donation. I was very eager to hear what she had to say. As you know, celebrities can help raise public awareness and build understanding for important social issues. Michael J. Fox has done a superior job for Parkinson's. Lance Armstrong has done an amazing job for Cancer. Natalie had a rare and important opportunity on LKL. Unfortunately, she blew it.

My expectations for the interview were fairly modest; educate folks about kidney disease and explain the need for organ donors. Instead, what we saw was a very narrow personal perspective, a misrepresentation of many facts, and a minimization of the struggle people face on a daily basis when in kidney failure. Here's a little snippet. There's more of the interview in associated clips.



Statements that pissed me off:

• "If I don't get a kidney, I will be fine." WRONG. Dialysis patients live an average of 7 years. Dialysis patients 60+ years live 4 years. She's 59, BTW. Also, 20% of dialysis patients die every year. Dialysis patients are hospitalized an average of twice a year. Dialysis patients are at risk of heart disease, bone disease, anemia, neurological disorders, infection, blood clots etc. Through the interview, she downplays the difficulties of dialysis and ignores the very real risks.


• "Dialysis interrupts your life, but other than that...You read, you eat, watch TV, and nap."" Oh yeah, what a party. It's one of the biggest myths. People think we bound from the dialysis chair feeling like Superman. BULLSHIT. I've seen people puke, get vicious cramps, pass out, scream in pain, code (go into cardiac arrest), and get carted off in an ambulance. I've seen a senile old lady pull the needles from her arm and spurt blood all over the floor. She could have bled out. Fun for everyone. You are stuck in a chair and cannot move for four hours. Most people can only watch t.v. because their brain completely fogs out. The people I see look like zombies, not like vacationing debutantes. BTW, food is forbidden at my clinic because they're worried we could choke to death.


• "Dialysis takes 3 hours and 15 minutes." FOR HER. The time spent on the dialysis machine varies based on remaining function of the kidney, blood volume, body weight etc. The average dialysis time is 4 hours. Many people are on the machine even longer. Often times you have to wait for a machine. It can take 20 minutes to get on the machine and 20 minutes to get disconnected (sometimes more). There's also travel time to and from the center. So most people are looking at a 6 hour + experience three times a week. This is the part time job you never wanted. It's not merely inconvenient. In fact, it's so difficult that only 23% of people on dialysis work regular jobs.


• "I have the healthiest blood on the planet." WRONG. WRONG. WRONG. Dialysis, at its best, is a substitute for 15% of normal kidney function. She also didn't adequately explain that dialysis not only filters toxins from the blood, but also removes excess fluid from the body that your kidneys can no longer get get rid of. For example, in each dialysis treatment they remove over 6 pounds of fluid from my body in the dialysis process. Imagine losing six pounds in such a short span. Most people feel like dog shit after dialysis. All Ms Cole would have to do to understand this is look around the freaking room the next time she's in dialysis.


• "All dialysis facilities are the same." Wrong again. Here's just one example of a hundred of how they can be different. The facility that I go to discards dialyzers (the blood filter) after use. Other facilities clean their dialyzers with bleach and reuse them when the patient comes back for the next treatment.


• "I have been on dialysis in Istanbul, Milan..." Good for her, but Medicare and most insurance companies will not pay your dialysis costs if you go out of the U.S. BTW, dialysis costs close to 12K a week, or nearly 500k a year. She made no mention of the costs.


• She poo-pooed the National Kidney Foundation for focusing on "prevention." That's just stupid. Prevention can keep most of the 26 million people with kidney disease from progressing to kidney failure.


• "They really don't know what causes kidney failure or how kidneys work." That's absolute nonsense. The kidneys are one one of the best understood organs.

I apologize. I realize this has been a rant. I don't condemn Natalie Cole for how she got kidney failure, many would and do. I don't have an issue with her using celebrity to solicit an organ donor. I don't begrudge her that. Larry King held up a sheaf of people who sent email that they were willing to get tested. I think that's wonderful.

What I don't like is that she was poorly informed and a poor advocate for the rest of us. And that's why Natalie Cole sucks.

If you are interested in learning more about organ donation, please click the graphic above or visit http://www.donatelife.net/.

Wergle Flomp

April 1, 2009

My good friend Kevin made a suggestion for today's blog. He suggested that instead of focusing on bringing you good poetry, that it would be fun to bring you bad poetry, very bad poetry, poetry so bad that it should be spanked and sent to bed without supper. My pleasure! Normally, I try not to crush anyone's literary dreams (at least in public), but I found a way around this that leaves my conscience unblemished.

So my friends, without further ado, I introduce to you "Wergle Flomp." Just a little background, because jokes are always better with some context.

In your web walkabouts, perhaps you have bumped into Poetry.com, a "vanity" contest site where quality is not a consideration. If you enter this contest, prepare for heaps o' praise for your work. The best part is that everyone who submits is guaranteed to be a "semi-finalist." Congratulations! Now, wouldn't it be great to share your success with friends and family? All you have to do is buy a shitload of expensive, ego stroking junk like poorly produced anthologies, personalized plaques, medallions, silver bowls, coffee mugs, commemorative plates, license plate holders, t-shirts, posters, panties, condoms, tattoos, bible addendums - you name it. Open those wallets and purses! It's a celebration of your genius.

So here's the game: Wergle Flomp is a contest offered by winningwriters.com to reward the person who gets the most outrageous, laugh out loud, ridiculous poem accepted by one of these vanity contests. Here's a "fair use" excerpt from the poem by last year's contest winner, Benjamin Taylor Lally. This work would do Stephen Colbert proud. Click the picture to see the whole poem. It gets funnier as it goes along. If you're a poetry geek like me, there's another whole layer of hilarity as the poem is a spot on parody of Walt Whitman.




Here's another winner for your entertainment. Click the picture to see the whole poem.

There are some poems so unbelievable and outrageous that I could not actually show you them on my little blog, but will happily provide these links for your entertainment. Pure Comedy gold.

Notice the praise that Poetry.com lavishes on this poem by Rick Lupert that is so disgusting, I couldn't excerpt it here.

Here's a past winner, "The Craven", that takes Poe's "The Raven" to new lewd heights.

Finally, here are the poems "Flubblebop" and "Yew Gotta Larf" by David Taub, the genius that started everything. Be sure to scroll down to see what Poetry.com sent him back.

There are many more past winners that will blow your mind. Just cruise around the winningwriters.com site to check them out. Enjoy! Let me know your favorite.

Anniversary

March 26, 2009

Around this time last year, I returned home from the hospital after living through kidney failure. In retrospect, I shouldn't have been surprised. In 1987, the nephrologists told me I had 20% function in each kidney and estimated 2 years until kidney failure. I was 19 years old then and the diagnosis did a Rock 'Em Sock 'Em Robot punch to my skull. The news knocked my concept of "self" into a mist that floated outside my body. I felt very temporary about this world and my prospects on it.

It took 10 years to regain some semblance of consciousness. Thankfully, I have good friends and a supportive family. I avoided any truly destructive behavior, was smart enough to always take my high blood pressure meds and stayed away from known kidney killers. I learned to cope with or ignore the exhaustion, headaches, and gout attacks. I directed my limited energy into work and avoided thinking about the future because keeping busy and good old-fashioned denial seemed to be my best coping strategies. 2 years stretched to 22.

Denial is a mule that can pack a lot of weight. A few years ago, I noticed that I wasn't performing as well at work. I had a hard time having the impact and driving the kind of change that had been so satisfying. I chalked it up to burnout. I contemplated changing careers. I thought that maybe I was depressed and considered anti-depressants and counseling. I decided I was far too fat and got in shape and lost a ton of weight. I went on a half-hearted search for an artistic outlet to replace acting and writing that were so important to me when I was young. Finally, I broke my vow never to marry and even invested in a dog. That's a ton of good positive weight for the mule. It felt good. It still feels good. I was living.

Unfortunately, my ass continued to drag (so to speak). I could barely get out bed. Honestly, I thought it was mental. It seems ridiculous now, but I refused to believe or acknowledge it could be kidney disease. It wasn't until my hands swelled to size of surgical balloons and my face was yellow and puffy with fluid that I looked in the mirror and realized, "oh shit, I'm in kidney failure."

So, a year ago after an emergency doctor appointment, I was hospitalized. Just in time, by the way. My blood pressure was something like 60/40 when I was admitted. Today, I have been on life saving dialysis for one year. I'm not celebrating with a cake and candles, but perhaps I should. Anniversaries are about counting stuff, so here are the numbers: 1 year, that's 156 dialysis treatments @ 4 hours a pop on the machine for a total of 624 hours, or 26 full days. I have also been on the kidney transplant list for six months with probably another 2 years to go.


You know what? I have never been happier. Being stuck in a chair has given me the time to write that I could never seem to find. It's slow going because my brain fuzzes out, but I already have 75 poems to my name and a finished book manuscript. I also know what truly matters to me. I have wonderful friends, a loving wife and an insane dog.

Best of all, I no longer feel temporary about myself.

Shocking Discovery on the Value of Poetry

March 18, 2009

In my last installment, I made a pretty long-winded and lofty argument about the value of poetry and how you could find it for free everywhere. I now refute my entire argument. I am now forced to admit: Poetry is not free. In fact, poetry can set you back a pretty penny. How?

I now present to you the poetry of one Elvis Aaron Presley.


Yes, ladies and gentlemen, for the estimated auction price of $4,000-$5,000 dollars, this little gem can be yours. See for yourself at gottahaverockandroll.com. While we may debate the "quality" and "maturity" of Mr. Presley's literary offering, there's no doubt this light verse from Elvis will inspire the financial investment of a lifetime.

Why would someone be willing to invest hard earned dollars for these specific poetic words?

Many people think "The King" may have been the embodiment and resurrection of Jesus Christ. At the very least, Jesus and Elvis share startling parallels. Now before you send me angry emails, click here for compelling evidence of this truth.

Some of you may be disturbed by the graphic nature of Elvis's poem and find it cruel and contradictory to the teachings of Christ. It is my assertion that hidden in the subtext of the poem, or perhaps even water-marked into the edges of the paper, only visible under ultraviolet light, there is an additional verse where Elvis's next act is to:

"tenderly touch a peanut butter and banana

smeared finger to the sweet birdie's head

and raise the feathered fucker from the dead."

Sadly, I will never be able to test this assertion, because I don't have $5,000 to purchase the original work. My apologies for leading you astray. Alas, I will never doubt the monetary value of poetry again.

Words thus Worlds: A Brief Case for Poetry

March 5, 2009


I finished up and mailed off a blizzard of journal submissions and contest entries for my poetry last month. It was an annoying amount of effort that interfered with time usually spent writing this blog, my newsletter, and even (gasp) poems. I sent off everything from a single poem to complete book length collections. I was very busy. You can check out the poem titles by clicking on the "Word Clouds." Pretty cool? You can make your own at http://www.wordle.net/. See, I'm already giving you great value for investing a couple of minutes reading my blog.

Now, I'm going to give you even more amazing bang for your buck and perhaps even change your life. Bold claim, I know. Just bear me out. Here's my thesis: For the investment of 1 minute a week, you can save time, money and enrich your life. Sound too good to be true? How is this possible?

Simply read a poem a week. It's really cheap and easy to do. 99% of the world's poetry is absolutely free. In fact, you don't even have to do anything special to see it. You will see poems pop up on busses, billboards, in newspapers, magazines, blogs, at church, in programs, novel introductions and an infinite number of unexpected places. You don't have to do a darn thing, except open your eyes and read.

Why you should read poetry? I'm going to answer that question for you right now. I'm so serious about this subject that I'm going to break out the Billy Collins. Please take 20 seconds to click on Billy and read...are you back? Did that poem nail your feelings about poetry, amuse you, make you nod, or even transport you back in time to an unfortunate highschool English class? Amazing, isn't it. A complete adventure in 20 seconds. What's great is that your mind supplied the images that accompanied the words. You co-authored the poem in your head while reading it. What's even better is that because you participated, the images are completely relevent to you and your life. You were the director of the movie that played in your head. You didn't have to suffer the vision or punches of a clod like Uwe Boll.

Here's another example, a wonderful poem called "Prodigy" by Charles Simic. This takes, at most, 60 seconds to read. Not convinced? What's in it for you? For the investment of 1 minute, you will receive the riches of an entire World War Two movie without sacrificing a scintilla of depth or meaning. You don't have to invest a butt-numbing 2 hours and 44 minutes. Just a single minute. What's even better is that this investment can permanently alter the way you see the world. After reading "Prodigy," perhaps the next time you see someone playing chess you'll remember the kindness of others in terrible times. Perhaps when you see a boy at the store clinging to his mother's coat, you'll wonder what you would do to protect a child's fragile innocence. This is the stuff that enriches one's life experience and touches one's bare humanity.

To summarize: poetry is everywhere and it's free. For just a few seconds a week, you can immerse yourself in an entire world that you help co-create. Poetry combined with your imagination can change your perception of the world. All I'm asking for is your commitment to read one poem a week. Please try it. It's a good value. And once you start, I bet you find that poetry is like Lay's potato chips. You can't stop at just one.

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.

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.