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.

Elvis Poem Auction Update

March 27, 2009

It turns out that my $5,000 estimate on the Elvis poem was terribly naive. It sold at auction for over $20,000! Who'd have thought that crushing the skull of an innocent bird would inspire investment.

Sigh, if only it was about the content. I suspect the purchase has more to do with worship of the famous author than the quality of the poem. The rumor is that the new owner plans leach the ink, fingerprint oil, and stray tears from the paper, brew a tea from the remaining sludge, and suck it down with expectations of eternal life.

I digress, back to quality; here is a bit of context for you. One of the top prizes for an individual poem in 2009 is from the Atlanta Review. For winning the contest with the best poem, you'd get, appropriately enough, $2009. However, there's a distinct qualitative difference between Elvis's charmless work and the contest winner. See for yourself. Here's the 2008 winner, "Flower Bomb" by Vivan Quoc Vu. Please, I beg you, click and read it. It's a war poem and your investment of 2 minutes could change the way you see the world.

Best of all, it is free.

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.