More Untallied Costs

This is from an article written by friend of Marla, Catherine Philp of the London Times. Go read the whole thing.

 

Trauma, Kidnap and death: all in a day's work for journalists

Five years after the invasion, the former Times Baghdad correspondent reports on the war's uniquely grim toll on colleagues she worked with, and explains why they still take such enormous risks

It is a quarter to one in the morning around the al-Hamra pool and the evening's bacchanalia is just unfolding. Another bottle of Lebanese red is popped open as a notorious Italian photographer tests out his charms on a bikini-clad reporter in the pool. At a rickety plastic table, another reporter is spinning a hair-raising tale of his journey across the Western desert into Baghdad, pursued by armed bandits. By the end of the evening, four of the party will end up fully clothed in the pool.

Five years since that riotous early summer of 2003, less than a handful of that evening's revellers remain in Baghdad. At least six have been kidnapped and held hostage by insurgents. Several have been wounded; several have retired from covering conflict zones, at least for now, too troubled by what they saw there. More than half have sought professional psychological help, or been compelled to by family or employers. Some have gone on to great professional success, or just gone on. At least two never got out alive, swelling the death toll that has made Iraq the deadliest war for journalists in history.

"I don't know anyone who came out unscathed," Caroline Hawley, the BBC's one-time woman in Baghdad reflects.

The psychological toll among journalists remains unknown; many who need help have not sought it and few will discuss it openly. The average time lapse for PTSD onset - seven years - harbingers troubles yet to come.

Shame and a sense of inadequacy have stopped many journalists talking publicly of their inner battles. After all, when you have witnessed such suffering, your own anguish seems woefully small. "I feel embarrassed to be talking about this when you set it against the monumental collective suffering of Iraqis," Hawley says. "I do feel guilty."

PTSD II

This echoes my past post on PTSD. I'm no expert, but this guy is. From the NYTimes:

 

What others view as a mental disorder — post-traumatic stress disorder, that is — Dr. Shay prefers to see as a psychological injury of war. Initially, when a service member returns from war, he or she often retain the behaviors that they adopted for their own survival while in a combat zone, he says.

"Most of it really boils down to the valid adaptations in the mind and body to the real situation of other people trying to kill you,'' he said.

Doh!

My whole family currently has a cold.  First it hit my partner, two days later me, two days later my stepdaughter. So this past Friday evening as we are all sitting around feeling miserable my stepdaughter has this to say:

 

I need to go to the ER

 

For anyone who knows me at all, you can understand the sinking feeling in my heart when I heard that statement. One third of my own household doesn't know that ERs aren't for colds. Especially not on Friday evenings in one of the lowest-income neighborhoods in the city.

Update

The last post that I put up was written a number of months ago, and I simply forgot to put it up. So there it is now. And for the 3 readers out there, I'm not dead. I've just been a little out of it. I will be back.

I just found this today. Loves it!

You Look Great!

"You look great!"

This phrase has come to surpass "How are you?" as my least favorite statement. That might seem odd, both phrases seeming innocuous, pleasant, even something you would want to hear. But for those of us living with an Invisible Chronic Illness, it becomes nails on a chalkboard. The implications of that phrase run deep. Much deeper than the giver of the compliment could comprehend.

Now, before you write me off as an overreacting bitch, let me say that I fully understand that people saying those painful words say them to make me feel better, not to make me cringe. But the effect on me is this: wanting to lunge at them, tell them to shut the #@% up, and/or to crawl into a hole and never come out. It makes me feel lonely, misunderstood, and like a failure. Let me explain.

First off, the times that I get told "You look great" are usually the times that I feel the crappiest. For example, when I'm having a Crohn's flare, I loose weight, falling into that extremely messed up beauty standard of skinnier is better, no matter what. The internal fevers and chills give my cheeks a rosy glow that signifies health to most people. To me it means uncontrollable sweating, and my body going haywire internally.

But I don't let my illnesses and disabilities stop me from having a positive attitude, from going to work, from interacting when I can with the outside world. So how do I respond when I'm feeling like a pile of steaming dung, and every where I turn I am faced with those nails on a chalk board: "You look GREAT"? I usually say: "thanks" and leave it at that. But implicit in that loathed statement is that if I look great, I must feel great. I don't mind most people thinking that. I don't need everyone to know how I suffer, I don't need to define myself by my disabilities alone (though there is no denying they have helped shape who I am, and what I do, and I am not ashamed of that, or I try to not be ashamed of that because I shouldn't be ashamed of it).

The problem comes when it becomes difficult to get people to respect the limits I must set if they think that I'm feeling great. Plus, many people who know that I haven't been doing great (for example, I just had brain surgery, and the honkin' scar that goes from mid skull to the base of my neck, along with the walker I'm using so that I don't fall over when I loose my balance) makes it hard to pretend that everything is OK. So people expect an explanation. Why are you relying on these things that you obviously don't need, why can't you hang out all night long partying, why can't you come back to work, why can't you just push yourself like we need you to when you look great?

It's not just me. From an article from the St. Louis Dispatch on Debi Stanley, a woman living with chronic pain:

Stanley felt isolated, angry and stigmatized, Rengo-Kocher says.

"She needed someone to listen to her, believe her, follow her through the process of controlling her pain instead of letting the pain control her," Rengo-Kocher said.

Stanley's frustration was not unusual, says Penney Cowan, founder and head of the American Chronic Pain Association.

Much of the frustration, Cowan says, stems from the inability of others — including family, friends and co-workers — to see the source of the pain.

One day you're nearly fine, and the next day you can't move. "That sends mixed messages to people when they watch," Cowan said, speaking from her office in Sacramento, Calif. "You could do it today, so why not yesterday?

"It sends a confusing message to the person with the pain, too."

Living with pain sucks, but what sucks even more is when the people who love you and see you every day don't really and fully believe you. It gets you doubting yourself: these people know me, there must be some truth to their disbelief. Maybe I really am causing myself this pain, maybe I really do need to just buck up, maybe I'm not trying hard enough and that is bringing on the pain, maybe I really do just need to get out of the house and that will make me better. Being in pain and thinking that you have control over it, and are just not exercising that control.... ouch. I go through cycles of acceptance, where I realize that I don't have control over the pain, but that doesn't mean that I don't have control over my happiness, my life, my loves and passions, my attitude. But it's amazing how quickly I can be knocked out of that acceptance by one statement or implied statement from someone else, from strangers, acquaintances, but especially from someone I care about.

It has taken me a long time to come to the realization that people can't read minds, and that like everyone else in the world, I sometimes need help. I can't do it all myself. No one can. In order to get the help I need, I sometimes need to ask for it, specifically. That is when I am often faced with those doubting Thomases: "Oh, you can do it. Just try harder. I don't want to coddle you, that's just doing you a disservice. You shouldn't coddle yourself." and so on. That's when the desire to crawl into a hole starts kicking in.

I'm a pretty tough chick. I've traveled the world, pushed through extreme fear, emotions, pain, depression, extreme work conditions, trauma (both physical and mental), being a caregiver for loved ones, and more. And I would like to think I've done these things without whining, without complaining, I've pushed on, without letting on that all I've wanted to do was give up. So when I do finally ask for that help, because I really really can't do X on my own, and am met with such reactions.... I feel misunderstood and terribly terribly lonely.

I may feel lonely, but I've come to understand that I'm not alone.

September 10-17 is National Invisible Chronic Illness Week. There are loads of great resources out there for folks living with hidden disabilities, and those that love and want to support and understand them. Some of my favorite websites that fall into that category are the following: 10 things NOT to say to a chronically ill person (scroll down the page to get to the list); ChronicBabe.com; Beyond Chronic Pain; and the American Pain Foundation.

In honor of this week, and in honor of those who are in your life, or who will be, whether you know it or not, (remember, they aren't called invisible for nothing) who power through life regardless of what holds them back, put your doubts aside and take a looksie. You might learn a thing or two. And for those of you who live with an invisible illness, do the same, in honor of yourself, the person in our lives we are most often the hardest on, and who we need to care for and understand before we can be the great friends, spouses, parents, and family members that we long to be.

Braille Graffiti

Thanks to the AWESOME Wooster Collective for sharing this.

My Inner Life

I have a hard time understanding people's lack of spirituality. I fully understand people's lack of religiosity, especially their disdain for the historical implications of most organized religion, and of any dogma in general. But at the same time, spirituality, my "faith" informs everything I do. That's not to say that I do things because I'm "supposed" to, because it was written down by man, but rather, because it comes from a place deep inside. A place which is both me, and is beyond me, that says: this is the right way; or: this is the wrong way. Something that is beyond self-interest alone (though I'm sure that is a part of it, evolutionarily speaking).

I've never been good at explaining this, and while some of the good people that I surround myself with are spiritual or religious, many, if not most, are not. They find it quaint or slightly amusing that someone like myself has so deeply and completely rooted myself, my life, my actions, in faith. (Personally I don't know how one could know even the basics of the workings of the universe and not live in a mind-blowing state of awe beyond ones self. We are the universe reflecting back on itself and I just don't see that as an accident. If it were an accident, that in and of itself would be miraculous.) At any rate, as I said, I have a hard time explaining what I mean when I say I am spiritual, and that I have faith. So this quote from the Dalai Lama hit a chord with me, it is a good way to explain what I mean when I say that I'm a very spiritual person.

Spirituality I take to be concerned with those qualities of the human spirit -such as love and compassion, patience, a sense of responsibility, a sense of harmony, which bring happiness to both self and others.
-His Holiness the Dalai Lama

Oh Those Frivolous Lawsuits

From the Cincinnati Post/Dayton Daily News

 

Monday, July 23, 2007

Docs don't have to be insured

By Anthony Gottschlich

 

FAILURE TO DISCLOSE BRINGS PENALTY

Failure to disclose a lack of malpractice insurance isn't a crime in Ohio, but it's subject to disciplinary action by the State Medical Board of Ohio. Penalties include a reprimand up to a permanent revocation of the physician's medical license.

DAYTON - Driving a car is enough of a risk that Ohio requires its motorists to carry liability insurance.
But that same reasoning doesn't apply to another life-and-death endeavor: the practice of medicine. There's no law requiring physicians to carry professional liability insurance.

Patrick Wilson found that out after his 44-year-old wife died following her second weight loss surgery in 2003 at Sycamore Hospital in Miamisburg.

Wilson tried to sue the surgeon who performed the operation, Dr. David J. Fallang of the Surgical Weight Loss Center in Dayton, but his lawyer gave up when he discovered Fallang didn't have malpractice insurance and had shielded his assets from civil judgments.

"Dr. Fallang has succeeded in making himself judgment-proof," attorney J. Pierre Tismo of Dyer, Garofalo, Mann & Schultz wrote to Wilson.

While malpractice insurance isn't required, Ohio law mandates that physicians who lack the insurance inform patients in writing and obtain a signed consent form prior to treatment in non-emergency cases.

Fallang, who's been sued 22 times in Butler and Montgomery counties for malpractice since 1991, didn't do that.

"I never knew such a statute existed," Fallang, 57, said from his office at Elizabeth Place, the former St. Elizabeth's Hospital.

This brilliant surgeon's excuse?

The Middletown resident admits "I'm not perfect," but he doesn't believe any of the cases against him involved malpractice. He said the suits were largely manufactured by the "medical malpractice lawsuit industry."

Those damn lawyers, killing patients, just so that the family can become wealthy.

 

"To be perfectly blunt, I don't believe that it's my responsibility to make my patients rich if there should be an adverse occurrence," Fallang said. "My responsibility is to take the best medical care of them that I know how."

 

Now, just about anything can go wrong in any kind of procedure. You know that as a patient going into whatever you are going into. For example, I'm about to have major surgery. I'm not planning on suing my surgeon. I have the utmost faith in him as an upstanding guy who would in fact take the best medical care of me that he knows how. That's cool. And it doesn't mean that something couldn't go wrong, I know that. But unfortunately, not all surgeons are like him. And at the expense of the patients, those few surgeons really fuck it up for the rest of them, making it sound like anything that is actual malpractice, gross negligence, whatever is just some greedy ass person who was willing to die or be deformed or maimed or disabled for life to line their pockets with some doctor's duckets.  I know surgeons are among the top 25 paid professions in the country, they are not stupid, so why do they buy into the insurance industry racket and place the patient at the heart of the problem?

Happy Birthday ADA!

Today marks the 17 year anniversary of the signing of the Americans with Disabilities Act. Almost two decades later and still so far to go.  

I Don't Think I Want to Know the Answer

From The Washington Post

 

In Over Your Head? Ask Your Body 

By January W. Payne

Tuesday, July 24, 2007; Page HE01

 

"The issue of feeling out of control is probably the single most important universal stressor," said David Baron, chairman of the department of psychiatry at the Temple University School of Medicine.

 

So, I have little control over many things, which is apparently important. OK, I know it is important because I struggle with it every moment of every day.  It is part and parcel of having any kind of disability. Damn it, how do you let go of control when you have no option? While simultaneously not freaking out?  You have to grab tight to whatever you can muster control over, but damn it takes alot of getting used to. Advice?

 

Rolling On

I am reading Martha Stewart bridal magazine. Yes you read that right. I am sitting in an airport, listening to announcements of flights to Paris, Madrid, anywhere. I watch people go by with what is obviously many of their worldly possessions on their backs and dragging along behind them. And I can't take it. I can't be in this airport, watching this life go by, and know that my life isn't about to change. I'm not about to meet a group of people my age, who share my passion and faith and bleeding heart and DRIVE and lack of doubt and hope. No possible new best friends waiting across the concourse. No life changing experiences waiting half way across the world. Isn't that what travel is for? Aren't airports just conduits for life altering experiences? If not, I'm not sure what to do in one.

So I buy Martha Stewart Bride. To my defense, I am getting married and it has been a 7 year courtship and to date 13 month engagement with one month of ring to show for it, and that's IT. But that's because I so don't care. "Eh" has always been my general feeling about marriage. Growing up I just figured that I wouldn't have a husband (what would have happened to him was fuzzy, just that he wasn't there anymore and it was me and my kids). I thought if I did get married it would be just like one of the dozens of weddings I went to as the kid of a Eastern European folk music group (a must at most Orthodox weddings). I saw myself in each bride, and man did I love to dance with her. But still.... I never really saw it for me.

Then my brother got married. He had the wedding I had always imagined (though a tad short of the traditional 3 day Serbian gala). Married at our church, reception in our backyard where my mom and us kids grew up in. Lamb roast, lots of slivovitza, and lots of music and dancing (again the traditional kind). So, that happened and I didn't need that anymore. So that left me with nothing. I searched: what would be perfect for us? Most weddings I attended I wanted to run out of the room screaming. And if I had been the bride, I guarantee I would have run down the aisle. I would have waited until that moment and I would have bolted. But I have been to a couple that were so them, so the bride and groom, so non-traditional and fun that I thought: why the hell not? I can do whatever I want. Ooooooooo, what a dangerous thought process. It tends to turn into paralization. I came up with some ideas, mainly a destination wedding to Costa Rica to keep down the cost, to show my love a place that I loved, be able to invite some Central American friends who I haven't seen forever, and could you beat the price? I mean, who would go to that wedding? Short guest list anyone? And for those who did go, it would be the closest family members and friends and it would be fairly easy for them to get around (in comparison to the other beautiful destinations I had in mind). But that plan turned out to be too popular. And the reality set in that his parents probably wouldn't leave the state, let alone the country for a wedding, and this isn't all about me, it's about us.

So I put if off, put it off. Then my dad died. Now I see. Now I see the importance of it all. Having something to celebrate in life. Coming together with those you love in a way that is beautiful. Being happy. Celebrate. That word has taken on a whole different meaning in the past few weeks. I didn't think that I would be able to crack a smile for.... I have no idea how long. Then my Godmother forced us to buy a ring. And there we were, celebrating together already. Celebrating our love for each other, all around. Something positive amongst such negativity. So maybe that's why I bought the magazine. I've railed against such things for so long, that now, now that what is normal....isn't. Well, maybe its time to turn the tables. Might as well give it a try. Of course I haven't been able to enjoy it, and I feel very ill looking at it, holding it, thinking that any stranger might think its mine (though the clerk who sold it to me complimented me on my ring), but I think that will pass and I will be able to indulge in fantasy for a while. When we first bought the ring (the diamond ring, oh my god the diamond ring (its vintage but still)) I almost threw up multiple times in the first few hours. I would look at it and couldn't believe the amount of money I was carrying on my finger. How many children could be immunized with that dough? How many wells built? How many microloans given? How many retired underground gun running revolutionaries from developing countries could buy a slice of peace with those $400? I've obviously have not been very good at wishing for things for myself over the years.

So here's the bright side (and trust me, with how much I've walked through concourses feeling less and less like a real person, today, this is a wonderfully bright side), unlike other airport experiences in the recent past, I don't have a gimpy, though less gimpy than me, 70 something year old 4' 11" woman pushing me in a wheelchair because I can't stand. No extremely uncomfortable woman has to pat me down with plastic gloves as I sit in the chair, holding up the rest of the busy busy busy world in their bare socks.
And now its time to board the plane. Back to my home, my routine, my lackluster existence that I wish no one else had to be subjected to. I could handle it, but I don't want to force others to handle me. I know this is an ablist thought, this feeling of being a burden to all who surround me, but there it is. At least I'm not ready for that plane to crash yet.

Post Script

For those of you finding yourselves all of a sudden the caregiver for your parent, here is a recent USA Today article which has some links to resources that might help. I know for myself it wasn't something I was prepared for in any way. We think about the future, but this part of the future seems to be a blind spot. No one wants to think about it happening, and then all of a sudden, one evening, there you are. The tables have turned, and there is no turning them back. As the first article in the USA Today series says:

"Starting to take over for your parents can be one of the most distressing experiences of a lifetime."

Its not something anyone whats to think about, but its something that you need to know about because its a time you need support, and trust me, social workers, discharge planners, admissions directors, doctors, nurses, aides, hospice teams; they are all great, but not one of them will help you to navigate the choppy waters of long term care and its financing on a personal level. 

 

I think what happens to so many is that their kids can't deal, and the parent gets neglected. The staff at the nursing home were amazed and so happy that Dad had people to care for him. So many family members simply admit their loved one and tell the staff "call me when its over."  Understandable to a degree because the difficulty of being a caregiver for a parent is inconceivable. But our parents deserve more. So take a moment, and begin to think about it. Begin to prepare yourself. You may think you have time, but you may not. My dad had just turned 62.

I Want to be Empowered

A little over a year ago I saw a documentary on PBS that scared me to the core. It was all about MRSA, basically a super staph infection that is drug resistant. Yikes! The rates of MRSA were frightening, but even more concerning was what was being done to minimize MRSA and its impacts on patients, which, with the exception of the VA and the Pittsburgh hospital systems, is next to nothing.  And its not like the steps to be taken to control it are overwhelming. We are talking handwashing between patients, doing a test of incoming patients and isolating those who tested positive for the bug.  Both the VA and Pgh have had great luck by instituting these small steps in a real systematic way. Great for them, but I'm not a vet, and I don't live in Pittsburgh.  But I also wasn't planning on going into the hospital any time soon so I didn't loose any sleep over it.

Fast forward to today and the fear and sense of helplessness in me is growing.  I spent the last 6 weeks in hospitals and nursing homes, caring for my father who passed away last week. During that time he acquired a staph infection, which I think is what ultimately meant: time's up.  The day after he died, I came down with pneumonia. Bound to happen. 8-12 hours a day in a sick care institution, no pneumonia shot, lots of interactions with fluid from Dad.  Add to that the fact that in the next month or two I will become the patient myself as I go in for brain surgery.  Surgery that will leave my spinal chord fluid draining out of a shunt in my spine for 48 hours. Surgery on someone with not the best immune system to say the least. The good news is that I'm not on steroids or immunosuppresants anymore.

 

So my question is: what can I do to protect myself?  I have no control over what health care providers do or don't do. I could remind them every time they enter my room to use the hand sanitizer next to the door, which I'm sure they would just love, but outside my room, I can't know what their hygiene is like, and I certainly couldn't control it even if I did know.  So what can I do as a patient? I'm scared silly.

 

Maybe I wouldn't be so frightened if I wasn't in the midst of a bout of magical thinking brought on by current circumstances. Considering the past 2 months, its no surprise, a quick timeline: 1. I find out about having to have brain surgery 2. my dad goes into the hospital for congestive heart failure 3. my dad was denied care by the insurance company, forcing a fight, and hours upon hours spent dealing with bureaucracies (thank GOODNESS I do what I do for a living, but still it was unbelievable) 4. my father in law has a massive stroke 5. my dad's kidneys fail 6. my dad gets into a nursing home, then goes back to the hospital, then back to the nursing home, then back to the hospital, then into hospice 7. my dad dies 8. I get pneumonia 9. I go to clean out my dad's apartment and discover he was a compulsive hoarder (who knows what kind of bug I might have in my system after cleaning it out) So as you can see, things seem to be going really wrong, and what else but MRSA could fit into this timeline? I shouldn't even ask that question. But still, when you look at the statistics of a newly released report on the problem, I can't help but shudder.

 

If anyone knows of tips for a gal in my position, feel free. Please.

Disgusting

From today's Washington Post.

As the nation struggles to improve medical and mental health care for military personnel returning from Afghanistan and Iraq, about 1.8 million U.S. veterans under age 65 lack even basic health insurance or access to care at Veterans Affairs hospitals, a new study has found.

The ranks of uninsured veterans have increased by 290,000 since 2000, said Stephanie J. Woolhandler, the Harvard Medical School professor who presented her findings yesterday before the House Committee on Veterans Affairs.

"The data is showing that many veterans have no coverage and they're sick and need care and can't get it," Woolhandler said.

Rep. Bob Filner (D-Calif.), the committee's chairman, said taking care of veterans is a continuing cost of war. "All veterans should have access to 'their' health-care system," he said. "This is rationing health care to veterans, those who have served our nation. And I think it's unacceptable for a nation of our wealth and our ability."

The Air We Breathe

This is frightening (what in the world these days isn't).  The American Lung Association has a map reflecting the "State of the Air: 2007" report, which allows you to see what the air quality in your area is, right down to the county level. It tells you how many "High Ozone Days" you've had, particle pollution (aka soot) levels, and who is at risk (well, all of us are at risk as we all breathe, but there are some that are at higher risk than others). Franklin County, where Columbus is located, got a big old F in all areas, putting over 420,000 central Ohioans at increased risk, solely counting those with diabetes, and lung and cardiovascular diseases. Check out how your state and county compare. Then take action and tell the EPA to grow a pair, and tighten ozone pollution standards.

The Difference?

I've been having a hard time getting my mind around what happened at Virginia Tech, how our Country has been collectively grieving, and how this all relates to what is happening, and what we have ignited in Iraq. On the one hand, my heart aches deeply for the families of the victims of this utterly disturbing individual. I know the pain of senselessly losing someone you love to an act of purposeless hatred and violence. I know that we all are in pain from what happened in that quiet town in Virginia. We feel deeply for what happened and collectively ask ourselves: "Why?"

 

But how do I link the outpouring of humanity and love and solidarity with the victims and their families, with the (for the most part) lack of that same thing for innocent lives lost en masse, daily, hourly, in Iraq? It could be said that we know Virginia, or places just like it. We could see that being ourselves, or our loved ones. That is not so easy to imagine when its people who live half way across the world. Someplace whose streets we have never roamed, whose universities we have never studied in, whose cafes and record stores we haven't perused. We tell ourselves: it is different. "I can't understand that, because it is so different from me. Everything about it is different. I don't know what its like to live in a war zone, I don't know what its like to lose 17 members of my family and be left orphaned. Therefore, it is different. The pain must be different, the feelings inside of the people experiencing this must be different."

 

But it is not.

 

I think many of us have imagined over the past few weeks what it must have been like for those terrified students in Virginia. Going about their daily grind, wiping sleep from their eyes, downing that first cup of coffee and settling in for another lecture, then........... I think we've imagined the fear, the panic, the confusion, the "Oh my God, this is happening" feeling that students must have been feeling.  But how many of us have thought of those in Iraq, that same day, getting up, eating breakfast, getting that first cup of coffee, jumping on the bus to get to work, or to the store, or to hang out with friends, or to go to school and then...........

 

It is not because we don't care. It is not because we just don't like brown people, or A-rabs. It's because we think it is different. How could we go on if we thought of it any other way? How could we function, and live our lives if we realized, fully and truly in our hearts, that what happens every day, and has been happening for years now, is the same. This pain, is the pain we would feel. No different. Just more tragic perhaps because the world isn't holding candle light vigils for the innocent civilians, just like you and me, who are caught in this awful, incomprehensible cross fire. What if no one mourned with us after 9/11? What if the world turned its back in indifference and numbness? But they didn't. So why should we? Can we do differently? I honestly don't know. I know that it is hard for me to function on a daily basis thinking about what is happening. If I truly let it in, I would be paralyzed. Then what? I'm still at a loss for what to say, how to react, how to make a difference. But all I know, is that a family's pain half way across the world, is no different from mine.

Buzzzz...First Ever US Malaria Day

Marking Malaria Awareness Day Did you know . . . In a phenomenon known as "airport malaria," infected mosquitoes can be transported to the U.S. by aircraft coming from malaria-endemic countries? Malaria is the single most infectious disease threat to U.S. troops worldwide? Malaria is the biggest killer of children under the age of five in Africa? Wednesday, April 25th, is the first ever U.S. Malaria Awareness Day. Health leaders around the country and the world are recognizing this day in conjunction with Africa Malaria Day . To learn more about the lesser-known aspects of malaria, see 26 Things You Probably Don't Know About Malaria and the Families USA press release on Malaria Day. Families USA has also just completed its Investing in Global Health Research publication series, including a fact sheet on malaria. The publications cover some of the major diseases affecting millions world-wide, and talk about why government investment in global health is crucial for humanitarian, diplomatic, economic, and military reasons. Sign up here to get updates on global health. Families USA's work on malaria is part of its Global Health Initiative (http://www.familiesusa.org/globalhealth ). Visit the web address below to tell your friends about this.  Tell-a-friend! If you received this message from a friend, you can sign up for Families USA. -------- Families USA | 1201 New York Ave., NW, Suite 1100, Washington, DC 20005 www.familiesusa.org | info@familiesusa.org

Don't Mourn- Organize!

Today marks the two year anniversary of our loss of the Marla. Below are remarks I made a number of months ago at the book release of Jennifer Abrahamson's biography of Marla.

*************************************************************************************
The publication of a biography of slain aid-worker and civilian casualty campaigner Marla Ruzicka is a good occasion to reflect on her life, brutally cut short April last year by a suicide car-bomber on the Baghdad Airport road.

Marla and I went to college together. We lived together and studied human rights and social change in New York, Central America, East Africa, the Middle East – and spent some down time in Europe. Our senior year we spent our first semester in Jerusalem. After nearly 4 years of witnessing to the world’s pain, I was feeling hopeless, weary. Marla and I fought hard about this, with her constantly trying to pull me back from that place, that hopelessness. Jerusalem is where she infected me with the swimming bug. Every morning, laps for an hour -- ignoring the lascivious, attentive gaze of octogenarian Israeli men, if she didn't care, why should I? Besides, it always included a wonderful gossip fest in the sauna afterwards, and how can you turn that down?

After Jerusalem we went our separate ways: her to finish up her fieldwork in Southern Africa, me to finish up my fieldwork in Guatemala. My feelings of hopelessness grew during that time, while Marla continued to push forward, and eventually we met back up at college for our senior year presentations.

I wasn't prepared. I had no idea what I was going to say -- no notes, no outline and after about 30 minutes or so of haltingly talking about the history of land rights in Guatemala and the situation on the ground at that time, I finally sputtered to a stop.

Marla's hand immediately shot up "What can we do about this? Like, what can we, sitting here in this auditorium right here, today, do to make things different for Guatemalans?" she asked.


That was Marla: cut to the chase. What could we, personally, do RIGHT NOW.

I was dumbfounded by her question because I simply did not know. I couldn't see a way, a path, right then, and I was immobilized by it.

After graduation, I went back to Ohio to do odd jobs, she to San Francisco to hit the activist circuit and eventually I became unemployed and once again, depressed.

Marla offered to fly me out to San Francisco for my birthday: we would eat burritos in the Mission, go thrifting (a shared passion), have long night chats in the hot tub while drinking red wine, (talking about boys and how the pretty girls got everything handed to them), go salsa dancing with Philip at the clubs. In need of some serious girlfriend time, I took her up on her offer. And we did every single one of those things she promised.

But, I was with Marla -- which meant I also ended up at 3 protests, got arrested, made the local news, volunteered at the office of the non-profit Global Exchange, attended impromptu fundraisers and a million other things. And Marla did even more -- being on east coast time, I would awake at 5 am, and she would have already slipped out to do whatever else she did. I remember her being very excited about finding a gym open 24 hours a day.

During one of those late night chats in the hot tub she gave me some career advice: "just go down to your local peace and justice center and get work."

"Marla," I replied. "It's Ohio, we don't have a peace and justice center to just go down to."

Her response? "Great! You can start one!"

I rolled my eyes, "Marla, this is Ohio. Get real." But I can see now, I was the one who needed to get real. If she had not been Marla, if she had not been so sweet, she would have simply said: "Get over yourself -- all hands to task!"

It wasn't long afterwards that she departed to Afghanistan with a sleeping bag, a few hundred dollars, and a mandate from Global Exchange to survey the impact of the U.S. war to topple the Taliban on the country's long-suffering civilians.

She ended up making history by successfully lobbying for compensation for the innocent victims of U.S. military action -- first in Afghanistan and later in Iraq.

It was a path that became her life's work and which also led her to its bitter, premature end.

When we were in El Salvador, Dean Brackley, a Jesuit priest we met with told us: "You must open your heart to the pain of the world and let that pain break your heart. It may feel as if you are losing your grip on the world, but in reality the world is losing its grip on you. When you can let go and lose control of your world, then you begin to fall in love, then you can truly begin to heal."

I know that Marla and I both felt that way -- we had those kinds of hearts.

But we went different ways with it. Like many people, I fell into a selfish, defensive shell of cynicism. You try to protect your heart. You try to keep the pain out by convincing yourself that there's nothing you can do. I was indulging in that cynicism. Marla saw that, and fought me on it, but she never indulged in it herself. She battled cynicism in herself as well as others, but never indulged it.

She battled fear, loneliness, pain, depression, doubt, herself. But she never let it stop her. She never stopped going. Because she had this underlying motivation: see suffering, do what you can to make it stop -- whether it was her family, her friends, or anyone else in the world -- that is what drove her.

Even if you can't see a way right then, it does not matter: if you keep going, the way will show itself.

Even now, more than a year after she died, I still meet people whose lives Marla changed.

I feel blessed to be able to have witnessed her transformation from a bubbly revolutionary teenager, tripping over her own words so you could barely understand her, into an effective woman who was eventually able to channel all of that revolutionary love and personal love and pain into truly changing the world --

Please visit the website of the Campaign for Innocent Victims in Conflict (CIVIC), the organization that Marla founded, to learn more about the important work that the organization is carrying on. www.civicworldwide.org

A biography of Marla's life "Sweet Relief: The Marla Ruzicka story" written by Jennifer Abrahamson was published by Simon Spotlight Entertainment, an imprint of Simon and Schuster. A movie about her life is being produced by Paramount Pictures, with Kirsten Dunst slated to play the lead.

US Government Releases Documents on Civilian Casualties

Important Announcement From CIVIC:

 

The US government released the first ever documents on civilian casualties through a Freedom of Information Act (FOIA) request made in June 2006 by the ACLU.  CIVIC has also requested this information but until now the government had denied its release.  After years of being kept in the dark about civilian casualties caused by US forces, we now have two thousand documents detailing the human cost of war and a snapshot of what the United States does – and still fails to do – after bullets and bombs harm Iraqi and Afghan civilians.

Through a special arrangement with the ACLU, CIVIC was able to preview the documents before their release this morning.  We noted that there are several serious problems with the US military's handling of the claims, including inconsistent administration of condolence payments to innocent civilians and poor record keeping of injuries and deaths.  Click here to visit the homepage where you can read our press release, the NY Times article published this morning and visit the ACLU's searchable document database to take a look for yourself.

Sincerely,

Sarah & Marla B

Here it Comes

I was just introduced to the best site ever. EVER. oooooooo. If you are a cat person, just click here. Don't sue me if your head explodes or anything.

Pain Part V

If you have pain, if a loved one of yours has pain, if you care about justice, please take a moment to read this Action Alert from the American Pain Foundation regarding clemency for Richard Paey (see Pain Part II for a background article from the NY Times, or here for background from the Huffington Post. It will only take a couple of clicks to send a message to Florida Governor Charlie Christ.

Do the Right Thing

New York City to Reward Poor for Doing Right Thing

By DIANE CARDWELL

March 30, 2007

Seeking new solutions to New York's vexingly high poverty rates, the city is moving ahead with an ambitious experiment that will pay poor families up to $5,000 a year to meet goals like attending parent-teacher conferences, going for a medical checkup or holding down a full-time job, Mayor Michael R. Bloomberg said yesterday

I will be really interested to hear what you all think of this initiative.  I have mixed emotions. My first reaction was: the underlying theory of this "experiment" to get poor people to do what is "good for them," is that people simply aren't doing these things because they just don't want to, they are lazy and greedy, and if we give them money, then they will stop being the irresponsible people we all know they are, because why else would they be poor? But take a look at who were are talking about.

 

To be eligible, families must have at least one child entering fourth, seventh or ninth grade and a household income of 130 percent or less of the federal poverty level, which equals roughly $20,000 for a single parent with two children.

 

To be eligible, you have to make no more than $20,000 for a family of three. And that's $20,000 in NEW YORK CITY, not rural Ohio, where it would still be hard to make ends meet and do everything that you need to do on 20K a year. Once again, do you think the reason people aren't making routine medical checkups, or parent teacher conferences are because they don't want to? I am all for innovative, out of the box, new ideas that could rev things up, and address what is an ever increasing income gap, with the numbers of people living in extreme poverty growing faster than any other sector of the population, but.... is this the way? Hmmmm.

How Many Days Left?

And how much more can we fuck up our world and damage all people, but mostly women and children, during these remaining days of the Bush Administration?  Well, we kind of sort of maybe partially dodged this bullet:

 

WASHINGTON (AP) — The head of the federal office responsible for providing women with access to contraceptives and counseling to prevent pregnancy resigned unexpectedly Thursday after Medicaid officials took action against him in Massachusetts.

This individual, Dr. Eric Keroack, before being appointed by Bush to head Health and Human Services' Office of Population Affairs, had apparently been known, and worked for an organization that doesn't believe in contraception.  That's right, doesn't believe in contraception. Who knows what he has been able to fuck up in the five months that he was in this position, but at least he's out.

 

Rich Bastards Suffer Too

Immigration : The Human Cost

Interesting Influences

The Washington Post did an article this weekend linking together the backgrounds of Obama and Clinton through one man: Saul Alinsky. For those of you unfamiliar with the guy, there is a brief narrative of his life included in the article. I never realized that both had this connection, and how deeply his influence continues to run through our society even today.

I fell into Alinsky style organizing after coming back from tramping around the world in college. My heart had been broken as I saw the extreme change that needs to happen at every turn, and was at a loss on how to make those changes happen, and even unsure if they could happen at all. I had packed my idealism away in the back of some closet of my heart, and tried to make it day by day. Marla was always there, poking and prodding: What are you working on? Why don't you start some radical organization? Organize a protest and just...just...I didn't have the energy to argue with her much about it, but to sum it up, I didn't do those things because I didn't think it would work. I lived in Ohio, she in San Fransisco. Ohio would never get it. So I took various jobs as temps, answering phones, doing data entry, feeling less and less like my dreams had led me to believe I would always feel. Then it happened.

I had finally packed up my dreams, and put them away for a career as an interpreter. At least I would be facilitating communication between people, bringing folks together to understand each other, even if it didn't mean changing much. I accepted my space in the interpreter program at a local community college, and resigned myself. A couple of weeks before classes were to start, I got a random email from an organization that trained organizers in congregation based settings. "Huh" I thought, "this might be interesting, I'll go ahead and drop my hat in the ring." By the end of that week, I had gone through multiple interviews, and bam, I was in training to organize. First book on our reading list: Rules for Radicals by Saul Alinsky.

Ah ha! I thought (and apparently so did Clinton and Obama) here is a way to be idealistic, but realistic at the same time! Ohioans could be moved by their self-interests, not slogans, empathy, or street theater. My pragmatism felt validated. As Clinton noted:

Much of Alinsky's agenda, she wrote after interviewing him three times, "does not sound 'radical.' " Even his tactics, she concluded, were often "non-radical, even 'anti-radical.' His are the words used in our schools and churches, by our parents and their friends, by our peers. The difference is that Alinsky really believes in them and recognizes the necessity of changing the present structures of our lives in order to realize them."

I tried to explain this to Marla, involve her in serious and lengthy debates over ideas. She never really responded to my arguments, just let me know, as always, that she supported me and was so glad that I was finally happy. Well, I wasn't happy, but I was moving forward and after having been so stuck for what felt like forever, that felt almost as good, if not better. Of course in the mean time, Marla was out with her own brand of organizing, "the Marla Model" of organizing, and we all know how amazing that turned out to be. I don't know why I ever tried to push her in any other direction, she was not made for the Alinksy mold. Hind-sight.

Last week I was giving a "community organizing" training to some staff at my place of employment. These are all organizers, but none had been trained in community organizing per se. They were surprised by the ideas of self-interest, one to ones, power, and the like. I was amazed at how helpful they felt it was to have a basic understanding of these things in order to get people to act (their goal, and the reason I was asked to perform the training).

Then today I went to lunch with someone from my job who I have not had the chance to really get to know. I sneakily thought: I need to do a 1-1 with her, and see what makes her tick. We asked each other the normal softening up questions. She asked the same questions I asked. It turns out that even though we are about 20 years apart in age, we both started out being trained in the "Alinksy Style" of organizing. And like Obama and Clinton, we both ended up working the system a bit differently than we maybe had initially imagined.

I could fill up a whole blog with what' s wrong with Alinksy, with community organizing, with organizing in general. But in the end, I couldn't imagine a better foundation of skills on which to build in order to change the world.

Is this guy so prevalent in your lives too?

I Second This Emotion

You are not alone in your sanity and anger. Outtakes from from an article posted on TomPaine.com:

Damn Right, We're Angry
Paul Waldman
March 14, 2007

Yes, we’re angry at George W. Bush. We’re not angry at him because of who he sleeps with, and we’re not angry at him because we think he represents some socio-cultural movement we didn’t like 40 years ago, or because he hung out with a different crowd than we did in high school. We’re angry at him because of what he’s done.

Yes, we’re angry about Iraq, and we may be for the rest of our lives.

We’re angry that America may now be the only country in the world in which torture is an officially sanctioned policy, proclaimed proudly in public.

We’re angry that they tell us we have to shred our freedoms in order to be safe, and that so many of our fellow citizens shrug their shoulders and think it’s no big deal.

And we’re angry that Bush has made our nation so hated around the world.

We’re angry that the federal government is brimming with people fundamentally opposed to the mission of the agencies over which they preside, the anti-environmentalists who run the Interior department, the mining company lobbyists in charge of mine safety and the union busters in charge of worker safety.

We’re still angry about Hurricane Katrina, that our government left thousands of its citizens stranded to suffer and die, while the president thought that the guy presiding over the disastrous failure was doing a heckuva job.

We’re angry that our government sends religious fundamentalists around the world to discourage condom use, thus condemning untold numbers of people to unwanted pregnancy, disease and death.

We’re angry that forty years after the Voting Rights Act, the Republican Party continues to exploit racism and do everything in its power to stop black people from voting in each and every election.

Those are a few of the things we’re angry about, and yes, that’s a lot of anger. But you know what? There’s nothing wrong with being angry. Anger is the appropriate reaction to moral outrages, to crimes against our common humanity, to the actions of those who would turn our country into something twisted and ugly.

Good for Washington

According to Kaiser Daily Health Policy Reports, Washington State is suing HHS over the citizenship verification law. Hells yeah! Governor Gregoire argues that it discriminates against children born to low-income undocumented women. Heck, it discriminates against infants born to low-income women in general.  Another argument on the side of common sense is that "the regulation is illogical because the state already pays the costs of delivering the newborn and, by doing so, validates citizenship." Regular readers will know that this is something that I've been following for a while, and I feel this is a perfect example of our special brand of knee jerk reactionary xenophobic legislative action at its worst.

Search Engine Fun (Part III)

Maybe this is only amusing to me, but it really trips me out how people find my blog through search engines. Here are the highlights for this week:

• if struck by lightening what damage can it do to hear and air unit?
• 'orthotic device for goats'
• flatbush diabetes kool aid
• killing the unicorn is wrong
• take care of your unicorn

These last two make me wonder if people still believe in unicorns? As for the others (who will probably never come back here), I do apologize that I don't know about damage by lightening, or even that goats needed orthotic devices. Hope you found what you were looking for.

Standing up For Rights, and Its Consequences

From the Columbus Dispatch:

 

Priest who lobbied Ohio lawmakers on abuse says he was forced to retire

By Laurie Goodstein

The New York Times

Friday, January 26, 2007

 

DETROIT -- In his last Mass as pastor at the inner-city parish in Detroit where he had served for 23 years, Auxiliary Bishop Thomas J. Gumbleton told parishioners that he was forced to step down as pastor because of his lobbying on behalf of the victims of sexual abuse by members of the clergy, a stance that put him in opposition to his fellow bishops.

Photo by Adam Cairns | the Dispatch

 

The news of this story came through a friend of Marla, who spoke to Bishop Gumbleton who in turn spoke to him about Marla, which is how I was connected with this. In other words, #1 those who speak out for justice are still being persecuted, and not just in other countries, but here as well, and #2 Marla still has that amazing knack of bringing people together. This is what the new friend had to say:
 

Here is Detroit, peace activists are organizing. My guess is that most of the nation's peace activists know him, but may not know of what the church is trying to do to him right now and the local organizing efforts. Bishop Gumbleton was not allowed to speak recently in Arizona because the local archdiocese would not approve.

 

And some background on Bishop Gumbleton from Wikipedia:
 

"In the past the bishop has caught attention due to his public protesting towards violent actions. In 1999 he was arrested outside The White House along with eleven other anti war protesters for disturbing the peace [4] Bishop Gumbleton has more recently been a very vocal opponent of the war in Iraq , being arrested once again outside The White House for engaging in civil disobedience, he was arrested along with United Methodist Bishop C. Joseph Sprague, Rabbi Arthur Waskow, Nobel Peace Prize laureates Mairead Corrigan Maguire and Jody Williams and members of pacifist organisations. [5] Gumbleton has distinguished himself as being the only Roman Catholic bishop in America to have taken such action in protest of the war."

 

 

You all know how we do here at unicornhat. We let those doing the wrong know that we are watching them do the wrong, and won't get away with it. Below is a list of folks who might need to hear from you.

His Eminence, Adam Cardinal Maida                

1234 Washington Blvd.

CH -7^th Floor

Detroit, MI 48226                                           

Phone:  313-237-5816

Fax:  313-237-4642

  infodesk@aod.org

His Holiness, Pope Benedict XVI                            

Apostolic Palace                                                                                              

Vatican City State, 00120

Italy

(Postage required - $0.84 = 84 cents)

benedictxvi@vatican.va

And some more news stories for background:

http://www.cta-usa.org/justchurch/detroit/index.html

http://ncrcafe.org/blog/34 

http://ncrcafe.org/node/880             

http://ncrcafe.org/node/898


 

From A Girl Who Wants it ALL

Since I've been kicking around this planet, there has always been the healthy discussion in society about women's roles in it, and how they have changed and can and should (or shouldn't) change. The question for today's modern woman (yes I know I called myself a girl in the title of this post, shame on me) has always been: Can We Have it All? Can we be effective wives and mothers, as well as succeed to our utmost at our career. Does one have to suffer because of the other? Do we consciously make these choices, or were we brought up to believe that we can have it all, its just a matter of social policy, and therefore we just keep pushing?

I was thinking about these issues last night as I was drifting off to sleep. This was around 7:30 PM mind you. I had seen my love for about 20 minutes total between when he got home from a 12 hour, physically demanding day, and before I snuck into bed as he went out to get food for us. I was very upset, thinking: DAMN! I have NOTHING to give to my family. Nothing. They have to do it all for ME. And its not like their days are easy. Then I thought back over my day. I gave a lot yesterday. Quite a lot. I didn't spend the day in bed, staring at a wall, giving nothing to anyone. I gimped myself to meeting after meeting, did research, tried to think big thoughts, did what others asked of me. I realized that consciously or not, I had made that choice of, if one or the other has to suffer (family or career), I had clearly made my choice, just subconsciously. I will work until I drop, and beyond. Then I will go to bed at 7:30. Damn. I had never framed it in this light: that I had made a choice to put my career first. Is that what I wanted to do?

Then it really hit me. There is a third party in all of this. It's not just about making the choice between work and family, and coming up short somewhere. There is the whole chronic health issue. So the question stopped being: Can we women have it all? but rather, can we ChronicBabes, have it all? We are needed at work, we are needed at home, and by golly our bodies need us to STOP every once in a while.

There has got to be a way, I obviously haven't found it since this just dawned on me. And it doesn't help to have a workaholic personality that will take nothing less than perfection for myself (gawd, how self centered is that?) But an article in today's TomPaine.com entitled Back On the Chain Gang helped shed some light on the subject of working my ass off. It's not just me, it's us. One of the lines in the article states:

It's hard to believe, but at one time people gave their lives for the eight-hour day.

8 hour day, HA! Even 9 hours makes me feel like I'm cheating my employer. So I guess this issue encompasses women, people with disabilities, labor, and politics in this country. Like I said, I sure don't have the answers but would love to hear what others think.