11/30/2008

When "Black Friday" Means Mourning

KING OF PRUSSIA, PA - NOVEMBER 23:  Shoppers l...Image by Getty Images via Daylife

We've all read the numerous stories and accounts of the death of Jdmytai Damour, a temporary holiday worker at a Long Island, NY Wal-Mart.

Yet, I can't shake this feeling that something has gone terribly wrong in America. When the ad agencies and retailers manipulate the public into a frenzy with the tacit support of the media it was only a matter of time before tragedy happened.

Each year there are accounts of scuffles and assaults as people fight with one another for bargains, but this year it has ended in a man who was just trying to make a living losing his life on the floor of a discount chain, trampled by hundreds of people who refused to help because they might miss the $798 flat screen which is only on sale for a couple hours. Worse, they know well Wal-Mart and other retailer's trick of only having a few of an item available at the "sale" price.

In the week running up to "Black Friday" not only were there the usual sale papers arriving in my mailbox and in my newspaper but the news outlets themselves felt compelled to get in on the mania with the requisite "Black Friday" news stories. Local TV stations invariably had their junior reporters out whipping up a frenzy in the days before the big event by predicting incredible bargains and gleefully telling people to get out early.

Every year television gets more and more into the act by sending reporters out to interview the nuts who set up camp in parking lots and giving them their 15 seconds of fame. Rather than calling into question the sanity of such behavior, the television stations take the tack that if you don't camp out in the Wal-Mart or Best Buy parking lot you're missing out on all the fun.

After all, to them the holidays are not about family and friends but rather about mass consumption and irresponsible spending. That's the other part of this I don't get. In an economy where everyone is hurting why do people still feel they just MUST have a flat screen TV - even if it's 60% off? Is it because they are told they're "missing out" if they don't buy something they can't afford and don't actually need to survive? Probably.

This year the government has been in on the action as well. The frequent public service announcements about the "switch to digital" have confused many people. I've talked to people who have thought that they must buy a "flat screen High Def" TV in order to even watch TV come February. Most don't realize their plain old TV will work fine since they have cable.

So, these people thinking they must buy a much more expensive television work themselves into a frenzy at these "Black Friday" sales.

This rampant consumerism is disgusting. If stores can offer these products at these prices for a few hours they can offer them at the same price all day or all season. There is no reason to have the "Blitz Line" and "Early Bird Specials" at stores. They serve no purpose but to whip people into a manic mob with everyone fearful they will "miss out" if they aren't the first through the door.

The result of that is a man lying dead on the floor of Wal-Mart on Friday morning while rescuers desperately perform CPR. In this video you can hear people in the background laughing and treating the scene almost as a party. At one point a woefully misinformed man announces they aren't "even giving his CPR. They won't give him mouth to mouth because they're afraid." In fact, the rescuers are using a new emergency CPR designed at the University of Arizona that does not require "mouth to mouth". As the efforts fail you see them pull out an ambu bag and other equipment in preparation for intubation.

While the man was being placed in an ambulance you can see on some videos shoppers continuing to rush out of the store with their big screen TV's and carts full of junk. They don't even pause to notice what has happened.

In the minutes after the tragedy Wal-Mart announced it would be closing. The mob inside protested loudly, many refusing to leave and continuing to shop and demand their purchases be rung up.

I cannot fathom this behavior. I cannot fathom people getting into fist fights as happened elsewhere over Chinese made pieces of junk.

On Thanksgiving afternoon as a news break came of the television about "Black Friday" sales in town, my best friend's mother commented: "Black Friday is such a horrible name. It sounds so evil and ominous."

She could not have been more prescient.

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11/28/2008

A Somber Thanksgiving

Harvey MilkImage via WikipediaI'd meant to post yesterday for Thanksgiving but time got away from me. I was making gingerbread for a Thanksgiving dinner we shared with out dear friends Sandy and Jeff and then spent the afternoon with them and their family. After that I had to run a show for Parazona on BlogTalkRadio so by the time I settled down enough, I was simply too tired.

So, today, I'll post my "Thanksgiving" thoughts.

November 27, 2008 marked the 30th anniversary of the murder of Harvey Milk. Milk was on the Board of Supervisors for San Francisco and one of the nation's first openly gay elected officials. He came to national attention at a time when Anita Bryant and her forces of ignorance and intolerance were running rampant across much of the nation from their base in Florida.

Harvey Milk came out late in life. He was around 40 years old before he finally kicked the closet door open and relocated from New York to the Castro District of San Francisco with his partner. He opened a camera store and began to run for office. After several unsuccessful attempts he was elected in 1977 to the Board of Supervisors for the city.

At the time San Francisco was in flux. The city was split between a working class police force noted for their intolerance of the growing gay community and a decidedly liberal and progressive political structure trying to make the city more open and welcoming.

On November 27, 1978, Milk was murdered along with Mayor Muscone by Dan White, a disgruntled supervisor who had resigned his seat in part over the direction the city was headed. After he cooled off he decided he wanted his seat back and was told it wasn't that simple. White slipped through a window in City Hall with a gun and killed Muscone and Milk at point blank range.

San Francisco saw a series of riots over the event. While White was arrested the police in the city were sympathetic to him and even openly wore their support of White and his murderous act on T-Shirts. Prosecutors failed to challenge the famous "Twinkie Defense" in which White's attorney asserted the murders were the result of his binging on junk food in the days before his crimes. The jury which excluded minorities and gays bought the defense and let White off with a reduced charge of manslaughter. He would serve only 5 years for the double murder and be relocated to Los Angeles after his release. In 1985 he committed suicide in his sister's garage by carbon monoxide poisoning.

This year a new film hit the theaters starring Sean Penn as Harvey Milk. The movie has met with critical acclaim at a time when LGBT people are reeling from the Proposition 8 vote that stripped them of the existing right to marry in California.

Harvey Milk's legacy continues. Famously he recorded a message before his death in which he said: "If a bullet should go through my brain, I hope it goes through every closet door in America." Milk was a strong believer that only through being out would LGBT people achieve any equality and measure of respect and legal protection.

So, this thanksgiving I give thanks for people like Harvey Milk who heroically broke new ground for all of us. He's often forgotten by young LGBT people whose memory of the 70's is more likely to include Abba than politics.

Yet, each of us know people in our lives who have helped us become who we are today. Some are fellow LGBT citizens and others are those who have been with us every step of the way in a world that still would like to deny us even the most basic Civil Rights.

So, today, I'll give thanks not just for Harvey Milk but also for:

My partner Michael who restored my faith in love and understanding. He showed me the depths of love and committment. In the past 11 years he's been by my side every step of the way. On the night of my liver transplant when I was too weak to stand he put me in a shower and washed away the poisons collecting on my skin because my liver could not process them. He memorized dozens of medications and made sure I took each as I was supposed to after my transplant. He slept on the floor of my room and on the floor of waiting rooms so that I was never alone during the process. He played his guitar and sang for me as I recovered in the hospital when I couldn't sleep. He did all this despite fighting cancer himself and being weak and in pain.

My brother Edd who taught me it was OK to be gay. He took me under his wing as a young gay man and made sure I remained safe in a world where gay teenagers are constantly at risk for violence or disease. He taught me the value of being an individual and how being gay did not mean being ashamed or lonely. He gave me the courage to stand up for myself and my fellow LGBT people. My brother came of age before Harvey Milk. He knew the era when gay bars were raided by police and gay men and women shaken down for cash or beaten by cops. He knew how violent the world could be if you're gay and he was one of those who gave us the courage and drive to begin to make those changes that we still fight for today.

My sister Peggy who despite what her churches have told her over the years about her gay siblings has refused to believe it. She has always been the ultimate "big sister" taking care of me whenever I have stumbled in life. I am fortunate to be much younger than my siblings and because of that have a "Sissy" who is as much a mother as a sister. When our own parents passed away her strength and love helped all of us, despite being adults, cope with that singular loss in a close Southern family.

My friends Joyce, Larry, Sarah and their families in South Carolina. Delivering newspapers for a living is not an easy business. Due to the persistent prejudices in our small Southern town, Michael could not make a go of teaching music as he'd done in the past. So, he ended up delivering hundreds of newspapers 7 days a week 365 days a year for almost 10 years. Joyce, Larry and Joyce's mother, Sarah also delivered papers for a living due to disability and retirement. Over time they became our second family. We shared many holidays and special occassions with them and to this day our bond is more than just "friends." When we lost our home after all the medical problems they were right there with us helping us move our belongings and making sure we didn't become distraught. During Michael's treatment for cancer Joyce filled in so I could be with him as much as possible.

My friends Sandy and Jeff here in Arizona. When we left South Carolina I thought I would never find anyone as wonderful as Joyce and her family. One of the very first people I met in Arizona was Sandy and her husband Jeff. Sandy was a member of the paranormal group I joined and immediately I felt a bond with her. Over the past 10 months she has become like a sister to me. We shared our Thanksgiving with them at their home this year. Recently, when I was having the insurance issues, Sandy and Jeff pitched in to make sure I had medication. I can't imagine life here without them and look forward to our frequent visits and our "Horror Movie Fest" that we instituted recently. Shining people and the light of love in a sometimes dark world.

To Dave, my donor whose selfless act has allowed me to continue to share in the love of all these wonderful people over the past almost 2 years. I never met you, but am thankful there are people in the world whose love knows no bounds.

All my friends at SPI and online. I've met some incredibly wonderful people over the years thanks to the Internet. Some I've met, but most I know only through email, blogs, or community groups. All of them are dear and I appreciate their love and support. So, here's to all my friends at SPI with whom I hunt ghosts and my friends from near and far: Ken at Spooked!, Cullan Hudson author of Strange State, Ro Abreau from Louisiana, Jimmy from South Dakota, Dethmama of Dethmama Chronicles, Insurance Guru who also writes there, and Paddy from Canada (Go raibh maith agat!).

Finally, I'd like to say thank you to two very special online friends over the years and a "thank you" to the folks of Connecticutt who defeated an anti-gay measure this year. Thanks to Bill and Kent for all the great blog posts, the great discussions between our blogs over the years and for being a symbol of the stability and love between two people. After being together for decades, my two friends will finally be able to legally marry now. Congratulations guys!

And thank you... for taking the time to read this. Pause not just today (or yesterday) but every day to say thank you to the people you love and even those who tax your patience. We're all in this together and everyone has a role to play.
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11/20/2008

"Mandated Coverage"

Regence BlueShield SignImage by James Callan via FlickrThe insurance industry has "agreed" that if the Federal Government requires every American to buy and maintain their own health insurance (if not provided by an employer) that they'll go along with the idea and accept patients regardless of health history or disability. How white of them...

The problem is, if people can't afford their mainly non-existent coverage now, how are they going to afford it just because the government requires it?

In Michael's case he doesn't have health insurance through the place he works. They just don't offer it. Even if they did, he's a cancer survivor so getting covered would be next to impossible. We can't afford to buy insurance at this point because at the end of the month, we're lucky to have two nickels to rub together after paying for the basics like food, electricity, rent, and gas to drive him to and from work.

So, where is the money to line another insurance executive's pockets going to come from? A tax credit? What good is a tax credit when you don't have the money from month to month to pay the bills?

No, this idea is just another corporate bailout just like the prescription drug program that is designed not to really help the citizens of this country but rather to pay off the big corporations and insure a continued flow of money.

Sure, they'll "accept" everyone, but getting a claim paid would probably be impossible. It's hard enough as it is to navigate things when private, for profit companies get involved in your healthcare, do we really expect that this will change because the government makes us all buy insurance from them?

No, the solution is not giving them more money, it is doing away with the for profit insurance scheme we currently have in this country. That is the only solution to providing care for the millions of Americans who can't afford healthcare now.

The insurers keep whining that "people just won't buy insurance" but the fact is that people can't afford their plans that provide any measure of real health coverage. The plans that most working people could afford without choosing between food and rent are worthless scams.

No, mandated coverage to bail out AIG and other insurance companies is not the answer to this problem and I hope President-Elect Obama has the good sense not to fall for another corporate sponsored disaster.
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11/17/2008

So Long Zip...

SadImage by NatalieMaynor via FlickrIt's almost a stereotype, the eccentric loner in a small Southern town. Harper Lee used it in her masterpiece work, "To Kill a Mockingbird" and it's been rehashed over time in various other literary and Hollywood works.

Yet, at least in my hometown the stereotype lived. His name was Andrew N. Counts but most people called him "Zip". "Zip" passed away recently although I only found out about his passing by browsing my hometown newspaper's website.

He was a classmate of my sister and 62 when he passed away.

Zip Counts, appeared to suffer from schizophrenia for most if not all of his life. I can recall seeing him walking down the street holding heated discussion with people no one else could see. Sometimes he would stop dead still and simply gaze into space.

My grandmother, the embodiment of almost every prejudice known to mankind was terribly afraid of Zip. I can recall on Saturday shopping trips she would warn me to cross the street if he was walking down Main Street. Yet, for some reason, Zip never frightened me.

There was something in his connection to things I could not see that intrigued me. I always wondered whose reality was "real" - his or mine?

When I worked in the Public Library I had more opportunity to interact with Zip. He would come in and pick up a magazine or book to read. He was always extremely polite and seemed to delight in watching the antics of children killing time waiting for story hour.

I found out from the article that Zip was also an animal lover and supported and helped with shelter activities. I had no idea of that side of him.

What most people saw when they looked at Zip was a rather strange man who talked to himself and could wear outlandish costumes. My personal favorite was a hot pink turban of the type you might see a 1940's starlet wear. It was especially fetching when he combined it with mustard yellow pants, orange socks, and multi-colored shirt.

Yet, Zip was much more than that I'm sure. He was a fixture in town and I can't imagine returning to Newberry and not running into him somewhere, either a restaurant or shop or just walking down the street.

So, goodbye Zip. You'll be missed by many for many reasons. As for me, I thank you for making me wonder about the nature of reality for the first time and opening up a lifelong interest in spirituality and perception although you never knew you did that.


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A Trip to Phoenix

Hospital sunsetImage by phxpma via FlickrIn the ongoing drug and health drama, last night I took a ride to Phoenix.

After Michael's BlogTalkRadio show, my face kept feeling very hot. I finally got up to take my temperature and discovered it was about a degree higher than normal. I waited about 5 minutes and tried again and found it had gone up another full degree.

Needless to say, I freaked out. Michael finally suggested we just drive to Banner Good Samaritan in Phoenix and have them check me over. This is in light of the fact that UMC still (as of 1:38 on Monday) not called with the results of the blood tests I had done on Friday morning.

So, off in the car we went to Phoenix. I was impressed by how quickly BGS worked in their ER. No hour long waits or anything. I saw a very nice doctor who understood my anxiety and what I'd been through. She checked me over thoroughly and said I showed no overt signs of rejection but she would run blood tests to make sure.

So, 45 minutes the later the verdict was in: no rejection seen. My white blood count was normal, AST and ALT were normal as well. The only glitches on the whole thing was a slight bilirubin rise, slightly high creatinine and glucose. However, she explained that these could have come from the stress I've been under and the fact I have not been eating and was dehydrated.

So, looks like things are working properly at least and I'm safe for now. She also suggested I call the program at BGS there in Phoenix and see about transferring to their care. I agreed and told her I'd planned to do that anyway.

Of course, my blood pressure was very high during all this and they waited after the results were back and I'd been told to see if it might decrease, but it didn't noticeably. So, she strongly suggested that I see about medication.

This morning I spoke to the folks at Roche who make Cellcept and my shipment should arrive no later than Thursday for them. Hopefully, the Prograf will be here tomorrow or Wednesday at the latest and crisis will have been averted.

Yet, I'm still finding myself hypervigilant and nervous. So, I'm probably going to have to see someone about the anxiety that doesn't seem to be letting up easily. I was diagnosed with generalized anxiety disorder some time ago, so this might have kicked it into high gear and I'll need help to get it under control. We'll see.

A special thanks to Insurance Guru for her kind support during the latter stages of all this and helping me make a little sense of some of the "insurance speak" I've been told recently.

Thanks also to Sandy and Jeff who came to my rescue as only the angelic beings they are could have.

Thanks to Michael for putting up with my being completely nuts for the past 2 weeks.

Deep breath.... and let's see what's next.

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11/16/2008

Mental Meltdown

H.J.Zoid - AnxietyImage by philozei via FlickrThanks to my very dear friends Sandy and Jeff I have enough medication to last until Wednesday. Hopefully, by that time my drugs will arrive in the mail from the drug manufacturer's programs and I will be once more over that hurdle.

In the meantime, I had blood tests done on Friday to check for any signs of rejection from the period of almost 5 days that I went without the Prograf medication last week as I was embroiled in the insurance nightmare and nightmare of having my doctors in Arizona drop the ball by not returning vital paperwork so the drugs could be released to me in any form, either from Medicare's plan or the drug company program.

I won't rehash that nightmare again. But despite having the drugs on hand this weekend I am still an emotional mess. I'm constantly on edge worrying about the results of those test. I was supposed to receive a call late Friday from UMC about the tests, but of course, that call never came. Now, I must wait till tomorrow to hear.

In light of this I am faced with a dilemma. What if the tests show problems? Do I go to UMC for treatment with no confidence whatsoever that the treatment would be timely and appropriate based upon past experience? Do I try to see someone else in the state to verify their results and receive treatment? Do I beg for money from family and friends to fly back to South Carolina to see if my original doctors could treat me and separate myself from my main source of love and support, Michael?

Needless to say, despite the outcome of all this, it has become abudantly clear that I will require treatment for depression and anxiety. On depression screening tests I now can answer "yes" to almost all the questions and the same goes for anxiety screening tests.

There are times during the day when I feel as though I will burst into tears for no discernable reason other than the thoughts constantly swirling in the back of my mind. I find myself pacing and only stop when Michael brings it to my attention that I'm wandering around the house like a zombie. I've lost all interest in my usual hobby and cannot even think about upcoming paranormal investigations that usually fill my free time with research or planning.

The consensus of opinion from people "in the know" is that the better choice for my care here in AZ would have been Banner Good Samaritan in Phoenix. I have heard horror story after horror story of incompetence in the patient support departments at UMC.

I can add to those as well. When I called their transplant cooridnator in a panic after being told Medicare would not pay for my medications and asked if they had someone on staff who might help me make sense of it or help with one of the programs I ended up doing myself, I was told that she didn't really know.

Most centers have a Social Worker who helps patients with such issues and provides guidance as well as making sure paperwork is completed by clinical staff in a timely matter. Either UMC does not have this basic service or the transplant coordinator has never been informed they do.

Regardless, I am an emotional wreck and I suppose my first mistake in all this was choosing the "hometown" program because I did not want to drive to Phoenix as I did to Charleston for treatment. As a result, I have put myself in serious jeopardy after almost 2 years of perfect health after transplant.

So, once I find out what is going on physically, I've got little choice but to seek mental health services now to deal with this anxiety and depression that I don't feel will lessen quickly even if all is well at the outset.

I'm completely off my game and feeling terribly guilty that I made a bad choice for my own healthcare in expecting UMC to provide the same support and caring shown to me at MUSC in South Carolina. If nothing else, I have learned that all transplant centers are not alike and run the gamut from fabulous to questionable.

In the meantime, I continue to freak out every time I go to the bathroom, constantly trying to determine if my urine is darker than normal, checking my eyes for any sign of jaundice, checking my temperature for any spike, looking at my arms and legs trying to tell if they might be the slightest bit yellow, and generally obsessing. I'm so nervous I can't eat and have to make myself drink something. The only relief is when I can get lost in a book long enough to let myself fall asleep which I'm doing more than normal as well.

Right now, I'm thinking "Is my face hot?" and the desire is overwhelming to go, once more, to check my temperature. So, I'll end here...

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11/15/2008

Did I Speak Too Soon?

Ku Klux Klan members at a cross burning in 2005.Image via WikipediaRecently, I posted about the final defeat of the "Old South" in this election and the repudiation of the old plantation and racist ideals in the South.

Perhaps I spoke too soon. In the days after the election racist statements and acts have increased dramatically as those on the losing side turn their incipient and hidden racism into overt and public acts of racism and intimidation.

In just the past couple weeks there have been a number of racist acts across the country:

_Four North Carolina State University students admitted writing anti-Obama comments in a tunnel designated for free speech expression, including one that said: "Let's shoot that (N-word) in the head." Obama has received more threats than any other president-elect, authorities say.

_At Standish, Maine, a sign inside the Oak Hill General Store read: "Osama Obama Shotgun Pool." Customers could sign up to bet $1 on a date when Obama would be killed. "Stabbing, shooting, roadside bombs, they all count," the sign said. At the bottom of the marker board was written "Let's hope someone wins."

_Racist graffiti was found in places including New York's Long Island, where two dozen cars were spray-painted; Kilgore, Texas, where the local high school and skate park were defaced; and the Los Angeles area, where swastikas, racial slurs and "Go Back To Africa" were spray painted on sidewalks, houses and cars.

_Second- and third-grade students on a school bus in Rexburg, Idaho, chanted "assassinate Obama," a district official said.

_University of Alabama professor Marsha L. Houston said a poster of the Obama family was ripped off her office door. A replacement poster was defaced with a death threat and a racial slur. "It seems the election brought the racist rats out of the woodwork," Houston said.

_Black figures were hanged by nooses from trees on Mount Desert Island, Maine, the Bangor Daily News reported. The president of Baylor University in Waco, Texas said a rope found hanging from a campus tree was apparently an abandoned swing and not a noose.

_Crosses were burned in yards of Obama supporters in Hardwick, N.J., and Apolacan Township, Pa.

_A black teenager in New York City said he was attacked with a bat on election night by four white men who shouted 'Obama.'

_In the Pittsburgh suburb of Forest Hills, a black man said he found a note with a racial slur on his car windshield, saying "now that you voted for Obama, just watch out for your house."

It is my hope that these incidents will eventually decrease, but the willingness of so many people to openly espouse violence and assassination and flout the law to protect a legally elected president and regular citizens makes me pause.

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President Elect Obama's Address

President-Elect Obama continues the tradition of weekly radio addresses to the nation but has added a new feature - webcast. His addresses will not only be broadcast but available on YouTube as well. Here's this week's address:

A Turn for the Worse?

In the ongoing saga of trying to get immunosuppressant medication that I need to live, another week has gone by and I'm only marginally closer to having access to these drugs on a regular basis.

Thursday, I wasn't feeling too well. Of course, my blood pressure was 140/130 when I had it checked, thanks in large part to constant stress with all this.

I finally was having panic attacks worrying that because this has been so hard and I've been without the meds for so long that if anything else happened and the drugs did not arrive on Friday then it would be at least Monday and over a week without them.

I couldn't eat and could barely take a few sips of water I was so upset. By afternoon, I was a complete wreck and noticed that my urine had darkened. This is a sign of rejection, of course it's also a sign of dehydration.

About 4:30 Michael convinced me to call someone at UMC to ask if I should maybe come to the hospital to be checked out.

I finally got their transplant coordinator on her pager who had already left the office. She was very brusque with me and pretended that she had no idea I'd been out of Prograf since last Saturday. This is despite repeated phone messages about that and at least one personal conversation about the fact I was out of the drug and desperate for her to do the paperwork that had lain in her fax machine for several days without being touched.

I asked if I should come to the hospital and she told me "No! You need to go buy some Prograf!"

I responded, "If I could afford to buy it I wouldn't be in this mess!"

"Well, you'll just have to buy as much as you can. Even if it's just enough for a few days that you can take half a dose."

"Do you know how much this costs per pill?" I responded.

"Well, you'll just have to do it someway."

So, I asked about my symptoms and asked point blank if she thought it was just psychosomatic and dehydration or a sign of rejection. I honestly had the feeling she just wanted me off the phone from the exasperated sigh I heard.

"Well, go in the morning first thing where you got your labs before and have them do them again. I'll call you in the afternoon and let you know."

So, I tearfully went to Michael and told him what she said. He checked the bank account and we drove to Walgreen's. I bought 2 1/2 days of Prograf for a little over $100. Still, we were hoping my shipment might come on Friday.

Friday morning I went to have my blood work done at Labcorp nearby. I returned home and called Astellas to see if my shipment was due to arrive today. I was told they had the fax from UMC but had not processed it yet, so it would be "a few days" before they decided 1. if they could send the drugs and 2. if they could, actually send them out.

So, no money for more of the Prograf and no hope of the drugs until probably Wednesday or later. Again, I was ready to be committed.

Finally, my friend Sandy who works for a GI doctor emailed me to see how I was. She'd been over Thursday night for our Paranormal group's radio show and supper. I told her what was going on and she was livid.

She began burning up the phones to find out what was going on. She found out that Astellas had approved the shipment and she begged them to get it out today or Monday at the latest. They assured her they would make every effort.

Then she asked how much I had left from what I bought on Thursday. I told her I had enough to last till Saturday night. She then told me that she and her husband would purchase me enough to last until Wednesday. I was speechless. I never expected her to do that for me since she certainly doesn't have loads of money to toss around either. Yet, she insisted that they help, so much to my embarrassment I accepted. After all, swallowing pride versus losing my liver and dying - well, I hope my Mother forgives me.

Of course, UMC was supposed to call me back this afternoon to tell me what the labs showed. Did I get a call? Nope. Nothing. Nada. Once more, their coordinator failed to follow through on an essential part of the job. So, now, though I feel better and my urine has returned to a more normal shade, I have to wonder until at least Monday. I might hear if something is wrong but I'll probably have to call myself just to be sure if they don't see anything wrong.

At the very least, I haven't been pleased with the whole situation. The lack of support from UMC has been mind-boggling. This afternoon, I decided to do a little more research and found the program had been closed for some time beginning in 2002. The official explanation was the "lack of an abdominal transplant surgeon", but the more broad cause was speculation that the program had been poorly run and too many patients were not listed for "non-medical" reasons. Even the Chairman of the department at University of Pittsburgh, one of the leading centers in the United States, blasted UA's treatment of patients awaiting transplant and the arbitrary criteria used to list patients. After this their surgeon resigned and the program closed for a few years until a new surgeon was located.

Of course, this begs the question, how stable can the program be with one surgeon and a staff who certainly seems to have other priorities than patient care?

I'm very hesitant about the care I've received at UMC and plan to speak to my original doctors at MUSC in South Carolina on Monday about possible alternatives to having UMC follow me any longer.

I have an excellent GI doc here in town now who can handle any local orders for blood work or anything. If I need someone on an emergency basis there are some respected hepatologists up in Phoenix. I would just feel much more comfortable knowing that I had MUSC behind me. Even from 2000 miles away they helped when my Medicaid stopped and I was awaiting Medicare. Never once, with them did I go without medication nor was someone not willing to find an answer to a question or return a phone call. And never once did someone make me feel I was a pest because I had a concern about my health.

So, looking at this experience, if I plan to survive out here, I think it will behoove me, once I'm sure I'm OK and my drugs are in hand, to get as far away from the program at UMC as possible!

11/11/2008

I Need a Fix

The fight to get the medications I have to take to live after a transplant continues.

After several calls to UMC yesterday by myself and the good folks at Astellas in order to get the paperwork necessary for them to send out Prograf to me, I find that nothing has been done at University Medical Center in Tucson.

Today, I finally navigated the automated menu to the extent of finding someone who was actually working and answering a phone. She checked the in box for faxes and discovered the two faxes from Astellas sitting there waiting on the doctor's signature and to be faxed back to the company. She also discovered the original pre-authorization request from the pharmacy where I'd taken my original prescription mid-week of last week when it was questionable whether Medicare would cover the drugs.

No one had touched that paperwork at all. They've had two days off for a "holiday" and it seems that they don't have coverage in cases other than people coming into the hospital on emergencies. Beyond that, the original request arrived before the "holiday" and has lain there with no one taking any action.

Since the pharmacy faxed that paperwork, I've learned that Medicare won't cover my prescriptions because I had my transplant before I was eligible for Medicare. Even if they did it would be only 80% of the roughly $2500 cost meaning I still could not afford the drugs.

When I spoke to Astellas, who makes Prograf this morning I learned they still were awaiting the paperwork from UMC that would allow them to fill the prescription and overnight it to me. Yet, I've been completely out of this drug since Saturday.

I learned at UMC that they would "put it on top of the stack" so someone could "see about it" tomorrow.

Honestly, I'm at a loss. Multiple calls from Astellas and myself have gone unnoticed since, when they are "off" no one seems to be checking for urgent messages or making call backs.

Now, even if UMC does their portion tomorrow it will be another two or three days for Astellas to process the paperwork and ship the drugs to me.

In the meantime, I found that I am still eligible to get Cellcept from Roche but need a new prescription. I called MUSC to speak to them about it, although since technically my "doctor" now is at UMC with my physician at MUSC as a backup they may hesitate to reauthorize the prescription from there. That will mean having to reapply to that program as well and waiting for UMC to decide they will get around to sending the paperwork back for that one.

As much as I love Arizona, I am beginning to wonder if moving here with the chaotic state of their healthcare system was a mistake.

Perhaps I should have just kept my mouth shut and continued to receive my prescriptions through the programs as before. Yet, my honesty dictated that I tell them that I had Medicare and because my initial information, which proved incorrect, said Medicare would cover my prescriptions, I informed them that I was grateful but would not need their program providing the drugs free of cost.

In this case, the honesty and desire not to accept charity that was ingrained in me by my parents has endangered my health. It seems that my situation is not of concern to anyone except me and no one seems willing to do even the most basic things to assist.

So, I continue to wait. Not taking the medications that you are told from day one are absolutely necessary for your survival.

Needless to say, I'm an emotional mess right now as I am powerless to do anything to save my own life at the moment... unless I decide to knock over a bank or something to get the money to pay for these ultra expensive drugs myself.

"How much of human life is lost in waiting." - Ralph Waldo Emerson

11/09/2008

A Broken "Hallelujah"

Michael introduced me to this stunning performance of Leonard Cohen's song "Hallelujah" last night.

The lyrics of the song are somewhat complicated and contain a great deal of subtext which makes them open to interpretation.

While Cohen's original version, replete with Biblical references appears to be something of a celebration of the sensuality and sexuality found in the Bible it can also be seen as an indictment of the role of religion in turning both love and its physical expression into something ugly and dirty.

K.D. Lang sang the following version in 2004. It differs slightly from Cohen's original in a few areas.

Lang chooses to include the following lyric:

"But I saw your flag on a marble arch
Our Love is not a victory march
It's a calling and a broken Hallelujah!"

Later she includes this one:

It's not a cry you hear at night.
It's not someone who's seen the light.
It's a calling and a broken Hallelujah!"

I have no idea what Ms. Lang's interpretation of these lyrics might have been. Judging from her passion and soaring voice I think it means much, much more to her than most who sing it.

However, for me, it is the perfect song for the aftermath of Prop 8 in California and our own Prop 102 in Arizona.

What I read here is an indictment of the vanity of religion who seeks to define love for all.

"I saw your flag on a marble arch... our love is not a victory march." Could it be a reference to the banality of churches declaring their "love" and "God's Love" for others while working tirelessly to make people's lives more difficult and less fulfilling? Could it be a reference to the way the churches trot out our right to love whom we will and enter into a lasting relationship in order to "turn out the base" for right wing politicians?

Does "a calling and a broken hallelujah" allude to the fact that we are not allowed to participate in the public celebration of our love and relationships? That our "hallelujah" is stifled by the religious vanity whereby mere mortals think they do "God's Work" by denying others the right to love and have security and just as importantly the right to shout our loves from the rooftops?

Does Lang's version of this song, go much deeper than Cohen's celebration of the physical and its relation to the spiritual?

Could this version by K.D. Lang be both the lament and the call to action in this world of religious intolerance and interference in the right guaranteed to us under the Constitution and by virtue of simple human dignity?

You decide:

11/08/2008

Socialized Medicine Vs. Whatever

I can't help but recall a quote by a voter during the election that Barack Obama would usher in an era of "socialized medicine" that would mean if she needed an organ transplant she would be denied.

socialized-medicine As most folks who have been through such a process can tell you there is much more likelihood that private insurers will deny you a transplant than the "socialized" programs we have now such as Medicaid or Medicare.

I received my transplant after my private insurer dropped me once I became very sick. I had to wait until I was eligible for Social Security Disability and as an offshoot, Medicaid to finally be allowed to be listed for transplant.

The process, once the process was approved and I had the magic card in hand was seamless. I did not have to worry over bills and co-pays. I received my post-transplant medications quickly and without trying to come up with extra money for "upper tier" co-pays and such.

Then, Medicare kicked in with it's attendant Republican backed "prescription drug benefit". This boondoggle and pork barrel project to shore up friends in the insurance industry has proved a disaster for me.

For the first time since my transplant I do not have the anti-rejection drugs that keep me from rejecting my new liver. This past week, I took my prescriptions in to be filled for the first time since my "drug benefit" kicked in only to find the company I have does not cover one of the drugs at all. The other drug is an "upper tier" drug and they cover only 75% of it. If it were something that was $100 a month, that wouldn't be too bad. But, this drug runs almost $1200 a month. That means I'm looking at $300 for this drug and $1300 for the other. That's $1600 a month which is twice what I make a month.

Without these two drugs I will die. It's quite simple, they keep my body from destroying my new liver and without them my body is beginning to attack my liver and it's only a matter of time before it's destroyed and I die a very painful death.

When I had the truly "socialized" system of Medicaid I did not have to worry. Now that I am on the program that the Republicans have "privatized" I cannot the medication I need to survive despite their trumpeting of how much they have helped people.

On Thursday, I called the private insurance company who provides drug coverage for Medicare recipients. I spoke to a very chirpy and upbeat young woman who explained the situation. I explained the gravity of the situation and received the sentiment: "Oh, I'm really sorry about that. If there's nothing else I can do, have a nice day!"

Have a nice day? How am I supposed to have a nice day?

I called my new doctors at UMC here in Tucson to see if there was someone there who might be able to help me. They didn't know. Back at my old facility in South Carolina they have a person who does nothing but help post-transplant patients find ways to pay for medication or have it provided through the drug companies. Here in Arizona there is no such person. No one knew what to do.

I called Medicare and spoke to someone there. She told me my drugs were covered under "Part B" of the program and I just needed to give the pharmacy my Medicare card and it would be no problem.

Relieved, I ran to my local Walgreen's up the street and gave them the card. The woman at the counter took it and my "Prescription Drug Plan" card and typed and typed.

As she worked I noted her angle pin, her cross, and other religious insignia on her frock. Finally, she turned to me and said, "Well, these have to be pre-approved."

"What does that mean?"

"Well, I'm not really sure. But it says in the computer it has to be 'pre-approved'. We'll have to call Medicare and see what we have to do."

Expecting her to pick up a phone I waited. She just looked at me, her little angel pin glittering in the fluorescent lighting.

"Well, do you do that or do I have to?"

"Oh, I can do it. But it usually takes a week or so for them to give us the approval."

Stunned, I said "I have enough medicine for another day and half."

"Oh, I'm sorry." she replied.

"Do you know what happens if I run out of this medicine? I reject my liver and I die."

"That's so sad. But, it'll be at least end of next week before we hear anything. Is there anything else I can help you with?"

The drug companies (those supposedly evil entities) do provide this life saving medication free of charge. The problem is, they only do it if you don't have Medicare, Medicaid, or private insurance. If you have any of those, you're out of luck even if you can't afford Co-Pays or "top tier" premiums.

So, today I run out of one of the drugs completely. I have enough of the other to make it till Monday. After that, I'm done.

If we had a single payer AND single provider system in this country, perhaps I would not be an emotional mess right now. If everything was handled by people using one single system there would be no need to coordinate back and forth with private companies either insurance or provider all trying to protect their bottom line profit.

With a single provider and single payer system she would have been able to type in the information and find out that, yes, I had a transplant and was not seeking to cadge immunosuppressants because I thought it'd be fun to take them. As it is, I now am out of medication for all intents and purposes and just have to wait for a private pharmacy looking to make a profit to decide to give me the medication. I have to wait on an employee at a government office to look at my medical records online and see "yeah, this guy needs these to live" and then call back a private company to OK the deal. Unfortunately, that can take days or weeks.

So, for all those who whine and cry about "socialized" medicine, I say "screw you." If I hit the lottery and can afford medicine that runs almost $2800 a month without blinking then I suppose I won't worry either.

No, that's the difference. I would worry, because I worry about the health and well-being of others as much as myself. Maybe that's why I'm a Democrat and not a Republican.

In the meantime... I wait and hope somebody approves this before I start rejecting.

So, President-Elect Obama, despite what the Republicans whine and cry about, PLEASE fix this system. Your people are hurting and dying.

11/06/2008

For the Doubters...

For those who had our doubts on Tuesday before Pennsylvania and Ohio went into the Obama column....

obamas_got_your_back

The More Things Change....

...the more they stay the same.

As I was still basking in the glow of Obama's historic win, as I was still savoring his beautiful words during his victory speech, as I was still reeling from the shock that truly the world could change and we could all embrace our better angels and reject the hatred and divisions of the past....

My sister from rural South Carolina sends me an email.

Well, actually two emails in a row. The first is one about how an "NBC Poll" shows 80% of American's believe in God. Well, that's not exactly true. The poll wasn't NBC and it didn't ask "Do you believe in God?" It asked "Do you believe the phrase 'Under God' should be removed from the pledge of allegiance and money?" The choices were: "Yes, I believe it violates separation of church and state." or "No, I feel it has historical and traditional significance and should remain." Most people said they didn't mind for historical reasons and did not mention their personal "belief in God".

That one wasn't too bad, other than being the usual sloppy email fact gathering. But the second one brought home to me just how backwards so much of this country remains.

It was forwarded from one "Christian" person to another before ending up in my sister's box. She forwarded it to me and dozens of others including my cousin who once told me I was a "Godless Sodomite" before returning to putting little flowers and Christian platitudes on her latest "prayer list".

The email contained an admonition to boycott the "Muslim Christmas Stamp" and to run to your nearest post office and "protest loudly". It then proceeded to list all the murders done by "Muslims" and announce they didn't even believe in Jesus Christ and shouldn't have a stamp!

Let's look at this analytically since I can't look at things any other way. First, it's not a Christmas stamp. It has been available for a number of years and is in honor of the Islamic holiday Eid which is in September, not December. It has nothing to do with "Christmas". Without this email my sister would never have seen one since the post office tends to put specialty stamps in places where there is interest in the subject. Thus, her city with zero Islamic population would probably never receive a single one. Since she obviously does not know nor correspond with anyone who follows Islam then she wouldn't get one accidentally attached to a letter.

Next point, Muslims do believe in Jesus Christ. They revere him as a prophet. He is not a Messiah to them and he is not some mythological figure who can fly and walk on water. He is an important teacher in their faith. Before the radical era of Islam, which, incidentally was helped along by Western colonialism and imperialism, Muslims regarded Jews and Christians as their friends and fellow "People of the Book".

Finally, certainly radical Islamists have done some horrible things. But does that absolve Christians of the horrible things they've done? Their hands are far from clean and their memories are fatally short.

Did she consider how "Christians" are entitled to their stamps despite the killings they have done? Did she think about how "Christians" keep her brother from being able to have financial and civil security through their endless anti-gay work? Did she think of "Christians" inspiring their young followers to violence against LGBT people in the name of "God"? No, she did not.

To hear the "Christians" who send these things tell it, they are the only ones who've ever contributed to the world. Before my sister sent this did she pause to consider that there are Muslims who serve in our armed forces keeping her safe? Did she consider that Arab-Americans have given their lives in defense of our nation?

How about Arthur Abodeely who flew with the Burma Brigade in World War II knocking out Japanese supply lines by flying deep into enemy territory?

Did she consider Michael A. Monsoor an Arab-American Navy Seal killed in combat keeping her safe in 2006? Did she even think of his Congressional Medal of Honor for Bravery?

No, she did not. That would entail her world view becoming complicated. When those factors are taken into consideration with a healthy dose of self-reflection the world is no longer the black and white of a two year old's conscience. It becomes a technicolor place full of paradoxes.

So, I am reminded that as far as so many in this country have gone there is still a long way to go for the rest. We woke up yesterday to a new day and a new world. In their world it's just business as usual and machinery hate, division, and religious intolerance continues to sputter away.

11/05/2008

143 Years Later

If you read a basic American History text you will learn that the Civil War ended in 1865 with the surrender at Appomattox, Virginia of Robert E. Lee's Army of Northern Virginia. Military history purists will argue it was another few weeks until the final Confederate troops in the field laid down arms.

obama-mlk Yet, in reality this war did not end. It simply moved underground and into the political arena. The creation of Jim Crow laws, poll taxes and other restrictive laws perpetuated the plight of the former slaves for another 100 years, denying them the right to vote, marry freely and enjoy the most fundamental civil liberties and security.

For the past 40 years we have, as a nation deluded ourselves into thinking we were "past" these struggles. Yet, African Americans still held relatively few positions of influence and power in our government. With notable exceptions such as Thurgood Marshall, Colin Powell and perhaps Condoleeza Rice the slate was very bare.

During the past several months we have seen political figures playing to our lesser instincts as rumors have circulated about Barack Obama's heritage, his friendships, his religion, and his race. Too often those operating in the shadows have played the cards of race and fear attempting to widen that not quite healed conflict from the 19th Century.

For the first time in years I watched election results come in without pause. During the early hours following the polls closing on the east coast I listened to pundits describe how this looked just like 2000 and 2004 and I was fearful.

Could America overcome 143 years of division in a single day? Was the hour finally at hand to lay the Confederacy to rest once and for all? Would we, once more, succumb to old prejudices and attitudes that had once launched the bloodiest war in our history?

With trepidation I watched the results. Finally, the news services called Pennsylvania for Obama and I felt a loosening in my chest. Still, though I wondered, how would this play out?

An hour or so later they called Ohio for Obama and I felt my body become lighter. For the first time I truly let myself think that this might be possible. That we might, as a nation, reject the old politics of the 19th and 20th centuries and truly become a nation that embraced diversity and stepped boldly forward together intent on fixing our problems, becoming self aware and finally ending a war that began in 1861 on the shores of Charleston Harbor in South Carolina.

As the night got longer and more and more states were placed in the Obama column I became overjoyed. Finally, they news services called the election for Barack Obama. He would become not only a breath of fresh air in an era of fear, division, and war but also our nation's first African-American President!

Quickly the news media flashed pictures of rallies around the country. At Spelman College in Atlanta I saw young African American women fall to their knees weeping in joy. I saw Martin Luther King, Jr.'s sister weeping openly in Ebenezer Baptist Church in Atlanta and that opened the flood gates for me. I sat watching the outpouring of joy, relief and healing. I cried as I saw people of all races embracing each other and weeping for joy, dancing, and screaming hallelujahs.

To be utterly honest, growing up in the south, I never thought I would see this day. Oh, sure, I would say that "maybe" one day it would happen. But knowing the deep seated racial divisions in my part of the country I never thought it would happen in my lifetime. I dreamed but dared not hope. But Barack Obama showed me the value last night of hope.

I am descended not of slave holders but of two very different parts of Southern society. On one side, I come from a devout Methodist family who repudiated slavery to the point that some left the south entirely rather than live among slave holders. On the other side I am a direct descendent of a plantation overseer. The overseer was the white manager of the slaves on a plantation and lived in a netherworld caught between rich owners and the slaves he drove to exhaustion in the fields.

As I listened to Barack Obama's speech he mentioned a lady 106 years old who cast her vote in Atlanta. I could not help but wonder what my own grandparents would think were they alive to see this day. After all, my paternal grandmother was 106 when she died. When she was young she knew people in her community who had been born into slavery.

In both cases my grandmothers carried those 19th century ideas of race and place with them. When they were feeling charitable they might refer to African Americans as "darkies" or "Negroes" but if perturbed they would often resort to the derogatory "nigger" in an off handed way that is incomprehensible today.

What would they think to see a proud, intelligent and compassionate African American man speaking eloquently of healing and public service as President Elect of the United States of America?  Would my dear "Grandmaude" think it a show as she did of the Moon landing? Would it simply be beyond comprehension for them to see the world in which they had come of age finally and completely fall away?

The news showed John McCain giving his concession speech from Phoenix. He was less than 150 miles from my home here in Tucson and as I watched the crowd booed and threw out many of the old epithets my grandparents would have found familiar. In that moment I thought, "I am watching the death of the Plantation Society at this moment." This was not an observation of Senator McCain or even Ms. Palin but the looks of stark hatred and sounds of catcalls that almost drowned him out as he spoke of his respect for Barack Obama and his desire for healing and shared purpose. This was Old Dixie in her death throes.

That, I think is what scared so many of these people so deeply that even today they continue to scream that the world will end and America will fall because of last night. They realized that their time has passed. America, the "real America" to use Ms. Palin's term, repudiated their values of division, racism and fear. Instead, yesterday, the country rose and said it was time to put an end to 143 years of conflict. It was time for change and it was time that America passed from adolescence into adulthood.

Last night was the night they drove old Dixie down. And, the Band, could not have been more right in their lyrics almost 40 years ago:

The Night They Drove Old Dixie Down,
and the bells were ringing,
The Night They Drove Old Dixie Down,
and the people were singin'.

Yes, I feel like singing... it's a beautiful new day and the Confederacy has at last been defeated. Ring those bells and in the words of Dr. King:

This will be the day when all of God's children will be able to sing with a new meaning, "My country, 'tis of thee, sweet land of liberty, of thee I sing. Land where my fathers died, land of the pilgrim's pride, from every mountainside, let freedom ring."

And if America is to be a great nation this must become true. So let freedom ring from the prodigious hilltops of New Hampshire. Let freedom ring from the mighty mountains of New York. Let freedom ring from the heightening Alleghenies of Pennsylvania!

Let freedom ring from the snowcapped Rockies of Colorado!

Let freedom ring from the curvaceous slopes of California!

But not only that; let freedom ring from Stone Mountain of Georgia!

Let freedom ring from Lookout Mountain of Tennessee!

Let freedom ring from every hill and molehill of Mississippi. From every mountainside, let freedom ring.

And when this happens, when we allow freedom to ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God's children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual, "Free at last! free at last! thank God Almighty, we are free at last!"

Yes, Dr. King, we are free at last! We have cashed the check and this time it has come in "PAID IN FULL"!

11/04/2008

Just Another Day...

It is Tuesday, November 4, 2008. I walk onto my patio in northwest Tucson, AZ and gaze into Tucson's impossibly turquoise blue sky while the light begins to turn gold as the Sun makes it way toward California and day closes in on dusk. A cool breeze comes from the west and I watch a single almost ephemeral cloud float overhead. Perhaps it is a refugee from the rains reported in Southern California and as I watch it seems to fade and finally disappears from view.

I am left with a strange feeling. At once I find myself both excited and fearful because this is not just another day. This is Election Day in the United States, but more importantly it is THIS election day. A day on which Americans are faced with a failing economy, two disastrous wars, a wealth gap that would boggle the minds of the Gilded Age Robber Barons, and a clear choice between a man who represents the politics of the 19th and 20th centuries and one who embodies the ideals of the 21st.

I cast my vote almost two weeks ago thanks to early voting rules in the state. I did not have to stand in lines or participate in the community aspects of the voting tradition. At the time, I was grateful for the respite from the ritual but now, I feel somehow a bit cut off from my fellow citizens.

What is this thing I feel stirring around me? The day seems preternaturally quiet and drained of the usual perception of being surrounded by other people in a small condominium complex. I still hear the rumble of traffic from Interstate 10 to the west. I still hear dogs barking in neighbors backyards. I can't make up my mind. Are they barking more than usual?

What is this weight that seems to make me feel in turns giddy and frightened? Perhaps this is what the turn of history feels like when you stop to consider it.

Am I sharing the feelings of my ancestors during other pivotal times in American History? Even without the barrage of commentators and "poll numbers" did they feel this same gravity and sense that tomorrow could well change the course of the world?

In 1992 I worked tirelessly on Bill Clinton's first campaign. Election day of that year was one of the longest days of my life. Yet, at no point did I feel this gravity. Then, it was more of a party, most of the young people I worked with on that campaign seemed, like me, to simply be exercising their muscle and trying to recapture some semblance of 60's radicalism.

Today is different. I return inside and flip between MSNBC and CNN watching commentators nattering endlessly about race, political ads, "belle weather states", and video clips of notable people casting their votes. Somehow, they don't seem to feel the gravity. To them this is a job. They treat it as we did in 1992 as a sort of party and game.

Then they switch to the rare clip of an everyday voter. In their face you can read that same sense of gravity and history that I feel standing on my patio. Quickly, they return to more polls and telling us what we each feel based on their pollster's questions.

And around me I feel the weight of history. It's an amazing feeling and I find myself tearing up a bit. What an odd emotion, especially for someone who became involved in politics for awhile and became a cynic.

I don't know what the rest of the night will bring. I don't know what tomorrow will bring. But, for once in my life, I truly think that I know what the wheels of history feel like as they turn and I am overawed.

Dedicated to: Susan Harrison, Mid-Carolina High School who taught me that history happens every moment, not just in history books.

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