Wednesday, December 23, 2009

It's like Santa or God...

A reworking of previous posts regarding my leaning toward eschewing belief in the unseeable, unknowable.

I was diagnosed with bipolar disorder (Type II) five years ago. I thought it was odd to suddenly be diagnosed with something of this nature at such an advanced age, although I had experienced several serious bouts of depression throughout my life.
The more I read and learn about this condition, the more convinced I am that it is just that--a condition, not an illness. I was diagnosed based entirely on my own reporting of symptoms, just as I was when I had depression.

I was raised in a family where we were told depression and bipolar disorder were not illnesses at all but manifestations of immaturity, emotional weakness, and poorly managed stress. This is why meditation, yoga, adequate sleep, and diet are recommended as helpful treatments.

Isn't most mental health knowledge really just conjecture? Nobody even knows why lithium is prescribed for bipolar disorder--is it just a placebo? Does anyone know for sure why it works? Has anyone actually seen a neurotransmitter? How are neurotransmitter levels measured? How are they tracked and observed within a bipolar or depressed person's brain? If emotional problems like depression and bipolar disorder can't be identified through any tangible means such as a blood test or imaging, then who can say that they even exist?

Isn't depression an emotion? How did it evolve into an illness? Isn't bipolar disorder an emotional issue and not a physical/medical condtition? I'm skeptical about remaining labeled with a highly stigmatized condition that has no tangible means of proving its existence.

Despite trying to live a healthy lifestyle, I have gained 60 pounds from taking medications for an illness I'm not convinced I have. I am sluggish and cognitively dulled. I plan to wean myself off of medication and I'll try to do a better job of managing my emotions and stress without pharmaceutical treatment.

Frankly, I don't see any reason to take medications for illnesses that nobody can prove I have--or that even exist. I made this decision a couple of months ago, pending the outcome of the MRI. The neurologist said that my brain looks, "really good." No bipolar on film.

How many people are sent to therapy following a bipolar diagnosis? Is it because the medications aren't what's really providing therapeutic value? I refuse to go back into therapy. My life is pretty clear to me. I can't think of anything in my mind that needs to be healed other than the humiliation of knowing I totally bought into having nonexistent illnesses. Am I sad? Yes, definitely. The thing that makes me sad so often is that I have significant cognitive difficulties. Being stupid is devastating. I cover up pretty well, but honestly, I think medications are making me worse, not better. I'm living a fraction of my life. As I've said before, I'd rather be dead at 53 having lived my life fully than make it to 73 because I sat on the sidelines sucking down pharmaceuticals that didn't even make me feel better or cure any condition I was told I had.

I'll still have to see Dr. G and Dr. B a couple more times so they can prescribe doses that titrate down appropriately. I need to talk to Dr. B about how much of my diagnosis is fact and how much came about because I was prescribed an SSRI that spun me into a hypomanic mixed state--a condition I never had before. Or since.

How many books and psychology experts are out there saying that to be healthy, de-stressed, and well-adjusted, we simply need to make up our minds to feel that way and it will be so? I tried mainstream health care; now I'll see how the opposite school of thought works for me. Benign neglect certainly can't be any less effective than anything else I've tried.

From now on, I'm only going treat illnesses that have tangible symptoms. I'm all about proof and the concrete. How do you think I became an atheist?

You know it's almost here

It's not Christmas until this lady sings: Darlene Love performs on Letterman every year on the last new show before Christmas. That's tonight!!!

This is a Christmas tradition I've only missed maybe twice in 20 years (including the writers' strike in 2007). I've written about this every year since I started this blog. It's a weird holiday tradition, but Dave Letterman and I both appreciate it.

Crank up the volume!

Sunday, December 20, 2009

Hearts will never be practical until they can be made unbreakable

Everyone I have ever loved has eventually broken my heart. Disappointments are one thing, but heartbreak involves betrayal, pain, or the realization the person you love is not that person at all.

I have a hard time keeping friends. Some drift away, but usually, I just walk away. Despite my overall low self-esteem, my expectations are quite high when it comes to relationships. Hurt me once, shame on you; hurt me twice, well, no, the opportunity for that isn't going to be there.

At least one friend was fired based on the possibility of disappointment. MJ and I met through work about 14 years ago. She had erratic moods and behavior, but she was a good friend. When I was newly diagnosed with bipolar disorder, MJ admitted that she was also afflicted. She told me how she had struggled with finding the right medication, with leading a normal life, with two suicide attempts, and with not dwelling too much on what other people thought.

In those first weeks of my diagnosis, I talked to MJ frequently. I had a million questions and there was a lot of information that only a fellow sufferer could understand. One day, Sonja--who was also MJ's friend--said, "Let me give you a word of advice here. MJ is not reliable. Don't depend on her too much. One day you're going to need her and she's just not going to be there."

I thought about that for a day or two and then I removed MJ's contact information from my phone and email contacts. The same question kept coming back to me over and over in the days after Sonja's admonition: If I can't depend on a friend when I really need her, then what's the point of having that friend at all? What kind of friendship is that?

That was 2004 or 2005, and I've only spoken to MJ three or four times since--and then pretty much by chance. I miss her, but that is greatly outweighed by the possibility of her hurting me.

In the last year, I've lamented the fact that I can't hold onto relationships. It's one of my biggest shortcomings. I believe I do my part, and that's why I expect others to put in the same effort. Take it seriously.

This topic is on my mind because of Joanna. We used to talk frequently, regardless of our respective geographic locations. We helped each other. We were supportive. We tried.

Joanna is an important scientist who works for the government. Apparently, her head is so full of science that the part of the brain that normally controls actions such as dialing a phone or answering an email has been completely excised. Have I called? Yes. Have I emailed? Yes. Have I received any acknowledgement at all? None whatsoever.

Frank and I were trying to figure out when, exactly, we last heard from Joanna, but we couldn't come up with anything in 2009. The last conversation was about three hours long.

Here's the thing. I don't need a three-hour phone call once a year. I'd prefer to know how Joanna is doing all throughout the year. I don't need a marathon phone call or a novel-length email. A simple reply to "Hey, how are you doing? Is everything OK?" would suit me just fine.

I've wondered if she's alive or not. I've wondered if the man she lives with but who doesn't love her is intercepting my phone messages. Has he somehow manipulated her mind?

One of the things about Joanna is that she has always been able to identify the perfect gift for me at any given time. Last year, this hit a snag when she bought me a life-size cardboard stand-up of Glinda, the good witch of the north. I'm a big Glinda fan, don't get me wrong, but I live in a 1200 square-foot house that is already too full of weird stuff that my mother insists on forcing on me. Glinda remains folded up and shoved between storage cabinets where she gets whacked by the doors and where Frank accidentally kicks the edge of her dress (and swears) at least once a week. Sending me the picture from the catalog would have made me laugh; sending me the 6-foot stand-up Glinda just irritated me.

After hearing nothing from Joanna for a year, a Christmas gift showed up on my doorstep. It was from a company that ships packages of Philadelphia foods to those who miss the taste of home. The box contained a hoagie (meat sandwich), a cheese steak (meat sandwich), two Philly pretzels (big carbs I can't have), cherry soda, Golberg's peanut chews, and some Tastykakes.

Let's play, "How well do you know me?" Ummm, I'm a vegetarian and I have been for years. I don't drink anything carbonated and I haven't for probably 15 years. I don't eat chewy breads because of my Eustachian tube dysfunction (doctor's orders). I haven't been able to eat chewy, sticky candy since the early 1990s when I had complex dental work done; in fact, I can't even chew gum. The Tastykakes are in the refrigerator, chilling in a box of spite.

This would have made a lovely gift for someone, but giving it to me really just shows a complete lack of thought. Does the thought still count if, in fact, there is no evidence that thought actually occurred? Has this woman completely forgotten who I am?

After opening the box and laying out the contents on the kitchen counter, I retreated to the living room sofa. For the rest of the evening, I fought back quiet tears, mostly without success. It wasn't because the gift was all wrong; it was because the gift clearly demonstrated how the friendship had apparently become nearly meaningless to someone who I had, until now, always assumed would care about it as deeply as I did. It was devastating to realize this loss.

Frank ate the cheese steak and the pretzels, and he gave everything else away to coworkers.

This is not how holiday gift-giving works. Does it? A heart-felt gift and a gift hastily given out of a sense of obligation are not one and the same--and it's hard to disguise the latter as the former.

All I really hoped for was a phone call or an email. Don't send me a useless gift and expect it to speak for our friendship. Or maybe that's exactly what it does.

Even more normal

On Friday, December 11, I had a full MRI of my brain, with and without contrast. On Tuesday of this week, I met with the neurologist to get the results. I met with him less than five minutes. Actually less than five minutes. Wouldn't a phone call have been easier and a lot cheaper?

The MRI is normal. That's good news, but it leaves me without any answers. Thousands of dollars and over a year of trying to find out what's wrong, and the only thing I know is that I'm broke. And I still feel unwell.

This tells me that there is no reason at all for me to continue treatment. What is the point of seeing doctors and taking medications in the absence of a tangible diagnosis? Do I have bipolar disorder? Prove it. Is my pain nerve related? Prove it. Are my symptoms tied to a vitamin imbalance? Prove it. Can't? Didn't think so.

Operation Detox commences now.

Wednesday, December 9, 2009

May could really benefit from some love and friendship.

My self-esteem and I are not in a good place. Waking up every day this week to 8-degrees-below-zero on the thermometer doesn't improve my view of life any, either. I cry on average twice a day. Not cry, exactly. Weep.

Compounding my misery is the fact that I itch horribly. The itch isn't as bad as the sensation that insects are crawling on me, stuck between my skin and my clothes. This could be a result of B-vitams deficiency. Or Vitamin D deficiency. Or protein deficiency. It's all in the blood work, apparently.

More whining tomorrow.

Tuesday, December 8, 2009

And so it goes.

Dr. S is incredibly perky and optimistic, even when she doesn't have any actual answers. In her office today, her assistant weighed me (199) and measured my waist (?) and hips (48). I've had an unexplained weight spurt that came on so suddenly, my stretch marks are bleeding.

I do not have candida, celiac sprue, or any other number of systemic health issues contributing to my quote, "general malaise." So far, the only possibility is a nutritional deficit that includes malabsorption of B vitamins, Vitamin D, and protein.

Dr. S is completely OK with this. She believes that once the vitamin problems are resolved, my mood will follow, as will my energy level, thyroid function, and cognitive deficits. No real commitment on curing my bipolar disorder and overall dorkiness.

Once Dr. S. runs out of answers, I'll be left with the inevitable explanation for all that bothers me: It's all in my head, I'm neurotic, and I suck as a human being.

I do not believe that we live in a world where anyone much cares about "what's inside." Inner beauty is a consolation phrase people use to comfort their fat, homely, mentally ill friends.

Perhaps my mood is colored by frustration. I never feel well, and yes, I do try to feel well. I do not believe my discomfort is rooted in deeply-buried emotional pain. Oh, please.

December 31 is coming. No answers by then will launch the next phase of being me. I have done things the way they were prescribed but without any resulting benefit to myself. No more doctors, no more medications. Enough.

It occurred to me today that since the temperature has been hovering at about zero degrees (windchill, -8) for the last four or five days, that these are the ideal conditions for my "has a plan, has the means" end-of-life scenario. That's not at all where I am these days. Maybe next week, after I get the results of my $5,549 brain MRI.

Wednesday, December 2, 2009


How is it possible to have so many symptoms, to baffle doctors, and yet have all tests come up normal? If this is normal, I can't imagine what truly sick would feel like.

Many vials of blood and several specialized tests later and all we know is that the blood work came back showing no anomalies at all. None.

No more sitting on the sidelines. I plan to start running myself into the ground like I used to with work and the nonprofit. Apparently, I never needed to scale back, after all. No harm has been done. I'm already senile and exhausted, so it's not like being rundown and stupid is going to result from manic multi-tasking. Of course, I was better at that when I was hard-core hypomanic. I miss it.

I hate life right now, and not just because it's sub-zero freezing and there's snow on the ground--again--when it's too early. I hate feeling so foolish. My doctors must think I'm a hypochondriac.

Granted, this most recent round of blood tests was normal, but it's just one of several sets of labs showing nothing out of the ordinary.

I give up. The next plan (mine) is to titrate down on all medications and go organic. If there's nothing wrong with me, then I don't see the point of taking medicine for illnesses I don't have. The big one--the one that makes me feel so, so bad about myself, well, I haven't decided about that one. Maybe it was all just a medication reaction crossed with extreme stress and a lack of coping skills. This one can't be seen on any test, either. So many naysayers claim it doesn't exist, and when I see people with extreme irrational behavior with the same diagnosis, I think, "That's nothing like me." Maybe I'm just immature.

My goal for first quarter 2010: No medication. I gotta be me. And if that doesn't work out, I will just cease to be.

Tuesday, December 1, 2009


"Write under your own name he said. There's no reason not to take credit for your own work." We were at a baseball game, and I had to squint to keep the setting sun from poking me in the eye.

"Aw, I don't know." I sipped my beer and tried to explain my reluctance to put my name on my work. The conversation started because I said I hold back my real work, my best writing. I said I feared not that nobody would read my writing, but that someone might steal it and pass it off as his or her own.

"Yaaa," he said, waving off my argument into the summer air. "Words. They're just words, and there are plenty of them to go around. Say what you want to say and take credit for it."

I had been to protective of myself. It's not that I think I write all that well, but when I create something, I want credit where credit is due. It has been on my mind lately. Several years ago, I was invited to consult with a very well-known and respected organization that provides technical support and training for agencies around the country that work with refugee populations. I was hired to do some training on the West Coast, and it went well.

I felt a bit uneasy, though, because as I was facilitating the training session, I noticed that one of the people from the organization that had brought me here was taking copious notes and collecting one copy of each handout in my presentation. Several times in the course of the day, this woman commented to me, "That was a really good point." or, "I never thought to explain it that way."

About a year later, I was on the program at a conference about connecting communities and including newcomers in community building. I sat in the front row of a large auditorium downtown. After I spoke, a group from The Organization got up to talk about cultural adjustment in the context of immigration. Looking up at the huge screen on stage, I was more than a bit stunned to see slides from my training program being used. Without my permission. Without even a nod of credit. Without any acknowledgement that I was even in the room.

My coworkers were all shooting me the "WTF" look. I wanted to stand up and shout, "Screw you! How dare you steal my work and imply that it's your own?"

The feeling took a long time to pass. A really long time. There's a possibility it still hasn't passed. Maybe this is also why I feel like it doesn't matter what name I type onto the page. Maybe it's why I can't bear to say all of those words that held in safe keeping deep inside of my head.

Words. Does anyone listen? Does anyone pay attention anymore? Does anyone go beyond the soundbite? Do words matter? Do I have anything worthwhile to say? Probably not so much.

This was actually a good month for words. I was on the local public radio station earlier in the month, and then on national network news, and very recently on NPR--nationally and in the middle of drive time. My words, my voice, my thoughts. Did anyone listen? I'll never know, but I was encouraged to learn that people at major media outlets thought my words were worthwhile enough to share the airwaves with far more important and interesting minds.

Oddly enough, I was so emotionally and intellectually drained after my tour-de-media, that there were no words left for my journal. It's unfortunate because there's actually a lot going on in my life and in my brain, and I know that getting it all out in words keeps me from getting lost in my head. My sense of direction is already starting to wane.

Saturday, November 28, 2009

The best treatment

I've been living in a whirlwind of doctor appointments, medications, advice, daily routines, work, self-education, wondering, lab tests, work, and symptoms that are as random as they are transient.

My life as it is currently takes a toll on me--part physical, part emotional. It's one thing to be sick, but to know you're sick without knowing what you're sick with creates a constant low-level frustration and anxiety. It also becomes exhausting.

Awhile back, Dr. G suggested that I cut back at work. I told her that sounded like a great idea, except there aren't many things I'm qualified to do, and certainly almost none that would bring in my current pay. Besides, I told her, doing nothing, laying low, having no real action in my day would kill me faster than any illness.

It has been interesting to note that I'm getting better at doing nothing--or my version of nothing. I've been working on my sleep. The inability to sleep continues to make me miserable. I've been trying to be more disciplined about maintaining a routine and a set bedtime. I've been sleeping better this week, a week, I should point out, when I only had to work two days.

This morning my husband was talking to me and he said, "You look better." I was a little confused.
"Better than what?"
"Better than usual. You don't look so tired. You look more relaxed. Your color's better."

Oh. No, no, no, no. I cannot accept that a lack of rest is the thing that
is making me so unwell. I am not that person who is so delicate that she must not encounter stress.

Absolutely not. I am made of tougher stuff.

Sunday, November 22, 2009

Not so much as a yawn.

Why am I always unable to sleep?

Tired most of the day, then wide awake at 3:00 in the afternoon. If I didn't take meds, I would stay up until 4:00 a.m. or so.

If I get six hours of sleep, I consider this an accomplishment.

This can't be healthy.

Wednesday, November 18, 2009

Obesity is going to kill us

A new report was released this week that concludes that the number one health threat to the U.S. population is obesity. Americans are getting fatter by the day, and the associated health toll is showing up in medical dollar signs.

The medical insurance companies claim they don't want to insure people who are obese. Let's face it, they don't want to insure anyone who isn't a specimen of perfect health and fitness living a risk-free life.

The thing is, my insurance company, Great West/Cigna, doesn't pay for anything except illness. The policy clearly outlines the many tools for wellness that are not covered including:
--Using the services of a dietitian or nutritionist
--Attending a university diet program (usually at a school's Center for Human --Nutrition)
--Personal trainer
--Gym membership
--Exercise education (classes)
--Fitness incentives

If you want to quit smoking, my insurance company, like so many others, will provide telephone counseling support 24/7, nicotine patches, literature, and if need be, consultations with a doctor. These tools will continue to be available over and over again, until the patient succeeds in quitting smoking or gives up trying.

My insurance will not provide any assistance toward my weight loss; however, it will pay for Lap Band surgery or traditional gastric bypass surgery, should I get to that point. In other words, if I gain another 30 pounds, I can have surgery, but at my current weight, Cigna is uninterested in my wellness.

I am not unique. The point here is that if obesity--which is expected to rise dramatically in the next few years--is such a serious and expensive health threat, wouldn't it make sense for health insurance companies to invest in just that--health?

I have taken a slightly different approach to getting what I need. For the most part, I have watched my weight spiral upward despite my many attempts to make it go the other way. I eventually stopped trying, and my weight, surprisingly, didn't change much at all. It hit a set point at 195 and seems to have found a home there.

This doesn't mean I'm content with that or resigned to it. Not at all. I recently made an appointment with a systemic wellness specialist who does a lot of endocrinology work. She's also a bariatric specialist, but I found that out after I got there.

I told her my story of frustration and fruitless attempts at getting skinny. I told her that being fit didn't matter to me. Being healthier didn't matter to me. I wanted one thing and one thing only and that was to look like an auburn-haired, purse-toting human toothpick.

She smiled. I was not the first to say this. She said something that took me by surprise. She said, "I believe you. I am sure you've tried. Before you can address the weight you're carrying, though, we need to figure out how it got there and we need to understand what your body is doing with its hormone and chemical processes. I suspect you have a lot of things out of whack, and a GP will tell you everything is normal, but as I'm scanning these lab reports you brought, I can tell you it's not."

Here's the thing. My insurance paid for this visit, but it won't pay for the nutrition plan and supplements needed to begin the repairs. Hormones, yes. Nutrition therapy, no. I'll be able to get some of that, but only because the doctor bills this kind of work as something that she knows will be covered. In other words, the only way to get it paid for is to lie.

Where I live, there is a large university with a hospital that does important research. One area they're known for is bariatric medicine. Several years ago, they launched a program to help very overweight (not morbidly obese) people reach a healthy weight through lifestyle changes, customized diet, group therapy, education, and behavior modification. The program has outrageously successful outcome statistics,but there is always a need for more participants. According to an article read, the biggest deterrent for participants is the price. No insurance company will pay for it.

I rest my case.

Sunday, November 15, 2009

my moment

I'm going to be on TV Monday evening. The story will run nationally. I hope I don't come off as the total dork I am.

Later in the week, NPR. Seriously. I have faith I'll sound more intelligent in that interview.

Thursday, November 12, 2009


And before I knew it, I was seated in front of a television camera, giving an interview to a national network. It had been a matter of days since the tragedy, and in an almost surreal turn of events, I had inadvertently helped produce the story.

Sitting in the darkened room, I was aware of my lipstick drying out under the lights, the slight quiver in my voice, and the voice in my head worrying that I would say something stupid or forget something important.

A reporter from the local public radio station then contacted me about doing a different angle on the same story. I found myself sitting, oddly enough, in the basement of my house giving an interview along with three of the other women who also work on the nonprofit. We ended up in the basement after the reporter had inquired on the phone, "And where is your project headquartered?" I blurted out the first funny thought that came to mind, "In the basement of my house." For some reason, the reporter thought this would add a certain authenticity to the meeting. What it really led to was me spending an entire day cleaning up the space. Although you can't see the room on radio, I feared the reporter would reveal the truth in a description along the lines of, "In a dusty, cluttered, pigsty of a basement..."

The interview went well, although the four of us felt a little bit bad when our stories made the reporter cry.

The fruit of a strange whim
In a moment of boredom or distraction today, I decided to google the name of someone I knew as a teenager. This is an oversimplification. In 1975, I participated in a program that matched American teenagers with kids overseas for short-term summer exchange visits. My group was matched with a group in Sao Paulo, Brazil. Patty came to my home in 1975, and I visited her family in 1976.

The trip to Brazil while educational, was akin to a visit to another planet. It wasn't a cultural issue; this was all about class and status. I came from a highly dysfunctional blue-collar family. My parents were chronically deep in debt, and the financial stress of always being broke influenced everything about our lives.

Patty's family wasn't just well-off; they were affluent. Their lifestyle was beyond my comprehension. They lived a palatial house and had live-in staff, including two cooks, a driver, and a handyman. At night, the house was protected by three German Shepherds that were trained not just to attack, but to kill. During the day, the dogs were kept in gated kennels where they snarled at anyone who passed by. I was fascinated that the dogs had been trained only to respond to commands issued in German.

At 15 years old, it is still possible to let curiosity overcome self-consciousness. I enjoyed my time with Patty and her sister Silvia. We kept in touch for a few years, but once college started, we stopped putting in the effort needed to write letters by hand and send them via airmail.

For the past couple of years, I did attempt the occasional Google search to locate Patty, but I was always unsuccessful. Until today. Today it occurred to me to search for only part of Patty's last name, and there it was at the third hit: Her father. It was a professional biography, and although the name left me 50 percent sure I had the right person, the details of the biography erased any doubts about who this was.

I sent an email. I knew the message was going to a public relations mailbox, so I kept it brief and formal. It seemed prudent not to come off as a possible stalker or total wahoo, given the circumstances.

Two hours later, I received a response from Patty's father. It was that easy. Thirty-three years had passed, and in a matter of hours we were back in touch and getting up to date.

Just one more reason to love the Internet.

Wednesday, November 4, 2009

I stand corrected. Sometimes troubling things do come to light.

Tuesday, October 27, 2009

Sometimes, irony is evil

On Sunday, two massive bomb attacks killed 170 people in Bagdhad and wounded hundreds of others. Those are hard numbers to comprehend, let alone think of on an individual-by-individual basis. What does that look like? Who were those people? It was so far away, does it matter?

In the United States, war tends not to meet us on a personal level at all unless it is one of our own who dies--specifically, a soldier. In those cases, we get the full press treatment all the way from family reaction to funeral.

Well, yesterday, one of my own met the war head on and did not survive. You won’t read about it in the news and you certainly won’t hear the story singled out on television. That doesn’t make this loss any less significant. The war has a face and it is the face of Hadiya Ali.

Hadiya came here with her family in March, 2007. She was part of my life on a daily basis for almost a year until she was ready to enroll in school. She also took a free English class on Saturday mornings, a class that had been set up for refugee women living in on the east side of town.

Her participation in both classes is what brought her to be one of the first four women who became the core of the refugee women’s empowerment group. Hadiya was our champion. She not only learned the concepts faster than the others, she taught newly arrived women why it was good for them to be part of the group. She cried when she had her first speaking engagement, and then she asked me to help her write about the experience.

Hadiya was a one-woman public relations machine for women’s empowerment, and she was never subtle about it. She wanted everyone to know about the work we were doing, even after she left us to speak on behalf of Iraqi women and refugee causes.

Hadiya made friends everywhere she went. She met the Mayor and the Governor; she did two public radio interviews and she was the subject of at least two newspaper articles. She knew almost everyone it seemed, as well as a hundred more beyond that. She loved Barack Obama, books (and she read them in English), education, empowerment for women, and being as social as possible. She cooked many excellent meals for Frank because she felt sorry for him, knowing that I was too busy to cook for him myself.

Hadiya used to love to sit and talk. We would talk for hours sometimes. She knew when I was hiding something, and she gave me a hard time about a lot of things. Sometimes she was a major manipulative pain in the ass and when that was true, we didn’t get along at all; of course, it was probably just because we were both hard-headed and opinionated.

Hadiya loved to travel, and her sons made it possible for her to go overseas to visit her other family members. On this trip, she said she would go to Germany and then to Jordan. She stayed far longer than she had said she would, and many of us were wondering if she was planning to come home at all.

Unbeknownst to her family, Hadiya sneaked into Iraq late last week. She was so close and the temptation was too great to ignore. She had some unfinished emotional business she needed to take care of. Hadiya’s elderly father was murdered while Hadiya and her family were in exile in Jordan. The crime was unrelated to the war and it remained a cold case. Hadiya never had closure—she had no way to say goodbye to her father, and she was always pained that he didn’t have a proper funeral. As his only child, she felt his loss keenly. She often spoke of the day she could return to Iraq to visit her father’s grave and to say goodbye properly.

When Hadiya called her husband to say she was with relatives in Baghdad, he was furious. He told her to get out of the country immediately. Who knows what Hadiya was thinking. Perhaps she thought the conflict had eased to the point that it really was safe enough to visit. Apparently, it wasn’t.

Ironically, Hadiya was at the travel agent’s office making arrangements to return to the U.S. when the bombings occurred. Her relatives who survived the blast called her husband, Majeed, to tell him that his wife had been killed.

Hadiya was outgoing, creative, tenacious, stubborn, witty, amazing, and full of personality—probably enough for several people. She had many friends and many fans. It was easy to be impressed with Hadiya.

All who knew her and who have heard the news are mourning. Frankly, most are heartbroken. We work with refugees and we understand more than most what the true cost of war really is. We know why refugees aren't supposed to go home during an active conflict, and we know that for many, never going home again is the deepest wound of all.

Hadiya had said numerous times that when she died, she wished to be buried in her homeland, a country she loved and missed deeply. Unintentionally, she has truly gone home to stay.

Hadiya was buried in Baghdad yesterday, in a grave alongside her father’s.

Tuesday, October 20, 2009

Friday, October 16, 2009

Medication realities

You're losing all your highs and lows,
Ain't it funny how the feeling goes away?
The Eagles, D. Henley/G. Frey

Wednesday, October 14, 2009

Let the games begin

Tomorrow: Physical therapy and then an appointment with the ear-nose-throat doctor.

Next week: Dr. G and more PT.

The week after that: Even more PT and a trip to the neurologist.

Later that week: The brain MRI. I want framed copies.

Sometime after that: Quality time with the bariatric endocrinologist mystery illness wellness lady MD PhD overachiever.

I remember when I used to spend my money on shoes and makeup.

Monday, October 12, 2009


OK, seriously. This freezing cold weather in not-quite-mid-October is tweaking my nerves. I hate cold weather. Hate it. We had a little snow this weekend, for chrissake. Grrrrr. I ordered a jacket from Land's End (one that will actually close and cover my ass) but it hasn't arrived yet. It can't be this cold--I don't have a jacket that fits.

The only way I can keep it together during the season change is to have the light adjustment first, and the temperature change later. The meteorologic gods really need to listen up: May cannot survive shitty winter weather if it's going to start in the first half of October and grind on through April. It is for this reason I do not live in the far north or Mid-Atlantic East.

Perhaps this is nature's plan for me. Survival of the fittest, elimination of the SADdest.

Monday, October 5, 2009

Holy crap! That HURT!

Things happen to me that don't happen to other people. My luck is strange, both good and bad. Today was...bad.

I woke up 35 minutes late and had to rush to get to work. I came out of the parking garage, walked a half-block, crossed a side street, took four steps along the sidewalk, and suddenly felt a horrible crunching sensation on the sole of my foot. And then it felt like I was standing on a lit charcoal briquette for just a second. I took a deep breath and attempted to resume my stride.

As soon as my foot hit the sidewalk, my situation became clear: Something was broken. I limped my way the remaining three blocks to the office. I hoped I could make it across the six-lane street with the 20-second walk signal.

At 12:30, I limped my way to physical therapy. Oddly enough, Monday is not my regular day, but there was a schedule glitch for this week, so I was moved to a different slot. Good timing. Toni took a look at my feet and let me know that my right foot was not broken, but torn. I tore the small tendon that connects muscle just behind the first metatarsal. Its proper name is the flexor hallucis brevis tendon.

Ouch. Walking. I was simply walking and while wearing good shoes, as a matter of fact.

I should be on crutches or wearing a boot-style walking cast, but since I feel like such a dork already, I refuse to add to that problem. Yes, that's right. I am eschewing medical treatment in the name of vanity.

There goes my dance career.

Sunday, October 4, 2009

A whole new direction

What if everything you thought was troubling you turned out to be attributed to the wrong cause? Vague symptoms evolve until they meet the criteria for a diagnosis. Medicine, practiced by process of elimination, yields few good answers. Very strange hoof beats go unheard.

Although my life history shows a predisposition for playing in risky neurological traffic, I hadn't had a full-blown bipolar episode until I was in my forties. A condition like that doesn't usually just jump out from behind the behavioral bushes more than four decades into a life, but in my case, it did. Why?

Systemic disorders with no definitive diagnostic tools such as IBS, allergies, post-herpetic neuralgia, migraines, crashing chronic fatigue, vertigo, vision focus problems, pelvic pain syndrome (encompassing at least five other symptoms), random rashes with no apparent cause, and insomnia, all torment me. Nobody has been able to tell me why.

I have always felt inextricably wed to Western medicine. It's not that I reject other medical beliefs on principle, it's just that I like to know how the answers came about. Where is the empirical data? How were the research studies carried out? How much data is there? From Reiki to homeopathy, I remain skeptical without vetted, peer-reviewed data.

There is a fungus among us
This brings me to Candida. No, not the yeast infection everyone knows. Systemic Candida found in the intestines could be the key to everything. Apparently, Candida run amok is sending Americans' health into ruins. We're all going down in blobs of wheat and dairy products, fermented with heaps of sugar. Heaven help us all.

Did I mention there is no definitive test for Candida? It's all a trial-and-error hunch. Hmmm. This sounds a lot like getting to a diagnosis of Bipolar disorder. Leap of faith. Have I mentioned how desperately I want to discontinue medication? It's making life better for the people around me, but frankly, things are not so fabulous from the inside out. But if this Candida thing turns out to be the real deal, maybe I won't need any medication for anything ever again.

If this turns out to be true and I endure some truly unpleasant months treating the condition, then I will be cured. Period. Just...cured. Cured from the brain to the toes. Cured of everything.

Here is just some of what yeast is supposedly doing to our bodies:
Genito-urinary infections, food and chemical allergies, chronic skin infections, rashes or itching, recurrent hives, cravings for sugar, breads, or alcoholic beverages, unusual or severe fatigue, spaciness, lethargy, mental fog, depression, poor memory, ADD, numbness, tingling, burning, insomnia, muscle aches, weakness, joint pain, swelling, dry mouth or throat, bad breath, nasal congestion, post-nasal drip, nasal itching, recurrent cough, wheezing, bronchitis, itching inside ears, ear infections, earaches, abdominal pain and cramps, bloating, gas, Irritable Bowel Syndrome, heartburn, mucus in stools, loss of libido, endometriosis, PMS, anxiety, depression, irritability, cold extremities, drowsiness, low body temperature, uncoordination, mood swings, headaches, dizziness, body odor not relieved by washing, excessive sweating, cancer, heart disease, MS, hypoglycemia, asthma, breast cancer, and arthritis, among others. Or so I've heard.

If I had known it was yeast that was making me so miserable, I would have tried to fix things long ago.

In the medical community, Candida has a nickname: The Disease that Doesn't Exist. I think that this diagnosis was made up to placate people like me who say, "You can see the symptoms, but why, oh why, can't you find the cause?" They could say it was gremlins or the effects of post-alien-abduction stress, but that wouldn't sound quite as plausible. You can always say a diagnostic tool is getting closer when talking about yeast, but you can't really get anyone to believe you when you say that about gremlins.

I feel miserable and have for so long that I will clap my hands and try to believe. Whatever it takes.

This thought was put into my head by the fine medical professionals who have been treating me with limited success. Even they are looking for some other avenue to pursue. We're all frustrated, but at least they are getting paid.

After doing lots of research online, I decided to buy a book: Complete Candida Yeast Guidebook, Revised 2nd Edition, by Jeanne Marie Martin and Zoltan P. Rona, M.D. This book says what all of the Internet information said, except it gives more in-depth explanations of the syndrome and it includes 200 recipes you can make out of wishes, brown rice and spinach--that's about all you can eat on the Candida diet.

Just for the record, I haven't had a vaginal yeast infection since 1988. I have never had thrush or any candida goo in my esophagus or mouth. I don't think I've ever had a fungal nail infection. I have, however, had topical (external) yeast infections of the skin across the throat area of my neck the past few summers. Just so you understand how confounding this is.

Candida is controlled entirely by diet and stress reduction. Meditation, yoga, and regular exercise are recommended. I think there's a rule out there somewhere that requires the stress-reduction-meditation-yoga-exercise clause be attached to any treatment for any illness, including leprosy.

You need to see the food list, or lack of food list, to really appreciate Albicans treatment. This includes: no caffeine, no sugar at all in any form ever, no wheat, no dairy, no gluten, no condiments, no peanut butter, no grapes, no (most) fruit, no juice, no mushrooms (no loss), carrots, alcohol, coffee, tea, cheese of any kind, no potatoes, no grains (most), no cereal, no legumes, no packaged foods, and nothing that contains any kind of yeast at all. I am a lazy typist, so this list is far from exhaustive.

The idea is to starve the yeast. I believe the real idea is to starve the patient and then make her so fucking miserable, she will never again complain about any symptoms because she will have something much worse to use as a reference on the misery index.

I am going to do this, but I'll bet I still don't lose weight. I'm pretty sure I am still immune to that.

Thanks, Jolie

Thanks, Jolie, for letting me pull so deeply from our correspondence so that I can test-drive my thoughts pre-blogging. --MV

Saturday, October 3, 2009

May needs a hobby

If I am to believe what I read, social isolation and a lack of interest in activities are key indicators of an unhealthy mind. Just raising the mere suspicion of being a mental outlier can find you sitting shoeless under the watchful eye of an armed guard when you least suspect it.

I haven't made any strides at all in allowing relationships into my life; in fact, I've put more effort into keeping people away from me. A hobby is in order. I don't want the thought police to use my lifestyle against me. OK, I already have a hobby--jewelrymaking--but lately I enjoy buying beads far more than I enjoy sitting still and focusing the way making jewelry requires.

Sunday is soapmaking day. I signed up for a class and it cost enough that I can't decide not to go. the truth is, I signed up for two classes in two different places. tomorrow is "cooked" soap, and at the end of the month there will be a class on cold-process soap.

If I really like this and I have an aptitude for it, maybe I'll start a business: “Soaps for the Psyche: We're crazy about soap.” My soaps will be infused with herbs, botanicals, and maybe a few leftover meds that lend unusual therapeutic qualities or, at least, inspire good names that imply those qualities:
  • Inner Calm Cakes
  • Bipolar Bubbles
  • OCD Enabler
  • Serotonin Suds
  • The Soap, Not the Rope!
  • Mood Lifter Lather
  • Cog-Fog Cleaner
  • Soooap—It’s-About-Time-You-Worked-Up-The-Enthusiasm-To-Take-A-Shower-And-Change-Your-Clothes
  • Slippery Slope Soap (Cleans up emotional baggage)
  • Better Than Therapy Bar
  • Showers of Happiness
  • A Whiff of Hope Soap
  • Mania Mender (sold in bulk); and,
  • Depression Circling the Drain.
I'm going to need a bigger crock pot.

Wednesday, September 30, 2009


When the going gets tough, May gets busy trying not to think so much, and certainly not to feel so much. That leaves me in a visual world, so I get my camera out and try only to see.

Monday, September 28, 2009

a good reason to call it a night

I had a terrible day. Terrible. Things kept going wrong. I can survive that, but I'm not so good at survivng the things that happen as a direct result of someone intending to make me feel bad.

Two of those in one day. Three, really.

Why do I insist on surviving? Not even I know the answer.

In all of my 500+ posts, I've never come out and said what my plan is if I decide to call it a life. Apparently, if you articulate something like that, you can go to jail. Ha! I would claim it was an artistic expression of creative writing.

My plan requires certain conditions. See, I wouldn't want to die in my house or in my car because that would be unpleasant for Frank. I wouldn't ever wreck the car because that would be a waste of a perfectly good car. I would never jump in front of a car because I couldn't possibly risk damage to someone's vehicle or safety. Why make the day miserable for someone who was innocently driving along?

I hate guns and I won't have one in my home, so that's out. I don't want to look gruesome, and my goal these days is to get out of pain, so no hanging, shooting, or cutting.

This is what I came up with. It would need to be very, very cold outside. I would deeply sedate myself to the point of overdose and then go outside and lie down on the ground. I would probably spread out a plastic tarp and lie on top of that so I wouldn't stick to the ground and it would be a lot easier to move my body after the fact.

Giving this further thought, I would probably tape a note to the door telling Frank not to come outside, but to just call the police.

The cold weather and cold ground are key to this plan. Use medication to slow the heart rate, and then utilize nature to induce hypothermia. Use a tarp, don't make a mess, be considerate.

No need to squirm. It's going to be 85 degrees tomorrow.

That's so Frank

Frank is the greatest admirer of his own home improvement projects. His latest might push me over the edge.

Our house has an internal bathroom--it's located in the exact center of the house. The room is extremely small, a condition made more obvious because the location means it is windowless and dark if the light isn't switched on. The bathroom itself was hideously ugly when we bought the house. The ceramic tile on the walls was a mustard-gold speckle on an off-white background. The toilet was gold and had a plastic tank. The sink was old, faux ceramic with glittery gold streaks blended among brown swirls. The vanity was stapled together and listing to one side. The walls may have been white at one time, and they were embellished with a pink floral Victorian-themed wallpaper border along the top edge. The floor was covered with roll-out vinyl faux tile that had become torn and curled up at the edges of the room. Apparently, no one had remembered to buy the adhesive. (That is not our bathroom in the picture, although the glow looks familiar.)

I designed an extensive makeover that included soft gold paint on the walls, a new, nearly silent fan, new light fixture, new power-flush toilet, a gorgeous wood vanity with a sink that sort of swoops forward, and the floor is 12-inch travertine marble tiles. We couldn't afford to swap out the wall tile, the shower surround or the gold tub, but once the room was painted and we installed a sage-green shower curtain, a green painted cabinet, and sage green towels, everything worked together incredibly well. The room is sophisticated and attractive despite its small size. But it's dark.

Maybe what happened next is really my fault. I commented that I wished there were a way to brighten up the shower area because it was really too dark for activities like leg shaving (which I only need to do about five times a year, anyway). I said, "Wouldn't it be awesome to have a skylight in here?"

This put in motion a four-year odyssey of Frank relentlessly researching skylights and calcuating the ways one could be installed, given several structural challenges. Eventually, we decided that a sun tunnel would be the way to go. Of course, which one to buy required another two years of research. Frank debated the pros and cons of different sizes and tube finishes--merely silvery or full-on mirrored?

I weighed in with my opinion: "Buy the biggest one that will fit between the ceiling joists." And so he did, but only after concluding that the skylight would fit only over the tub, above the end opposite the faucet. It would be like having an overhead light in the otherwise dimly lit shower.

Eight or nine months after all of the components were purchased, Frank finally installed the skylight. It is pretty fabulous. The entire room is illuminated and bathed in a soft, sunny glow. In the tub itself, there is actual sun glare on the porcelain. Of course, Frank scrubbed the tub after finishing the installation specifically to garner this result. He's very proud of his work, I can tell. I keep finding him in the bathroom, just standing there, looking up at the ceiling and admiring the installation.

For five years, I have always made a point of closing the shower curtain before leaving the bathroom in the morning. When I lived alone, this wasn't a big issue for me, but Frank likes the way it looks, and he really is his mother's son in so many ways. I have learned to conform to the shower curtain arrangement.

Imagine my surprise, then, when I found the shower curtain pushed into the center of the rod every time I entered the bathroom. I push it the length of the rod, I come back and it's clumped at the center. It's like living with a defiant ghost who has fixated on sage green crinkly satin.

"Frank, what's up with the shower curtain? Are you still gluing or something in there?"

Frank looked at me and blinked. "Nooo. The curtain is too dark. It hides the light. Maybe we should get glass doors instead."

His words struck fear into my heart. I grew up with sliding glass shower doors in a house that had water so hard it would knock on your head when you took a shower. Glass doors were a nightmare to clean, and although cleaning chemicals have evolved since then, I can't imagine cleaning the glass is that much easier. Minerals are an economic anchor in this state and that is reflected in the water.

I glanced in the bathroom. The door was not only wide open, but pushed as far open as the laws of physics would allow. The hallway was bathed in the soft light spilling from the bathroom. "Frank, the shower curtain is not inhibiting the light. It's like a sunny day in there. You could tan or get caught up on your daily dose of vitamin D just by going in there to pee. Stop it with the shower curtain."

Today I noticed the Bed, Bath & Beyond flyer was opened on the kitchen counter. Shower curtains. Pale, floaty fabric shower curtains. They do not match the color scheme. They do not afford much privacy.

Frank. The skylight is lovely and the bathroom is great just the way it is. Back away from the 20% off coupon. Now.

It's that time

Now entering the danger zone known as fall. Cooling weather, shorter days, more work, fitful sleep, and dark, dark mornings.

Every year, I am sure I won't survive it. This year is no exception. I've been told I'm resilient.

Maybe so. Time will tell.

Saturday, September 26, 2009

Me duelen los pies. Pasé diez horas en pie después de una semana de dias de trabajo de 12 o 14 horas.

Necesito una copa de vino y un día de sueño.

Tuesday, September 22, 2009

No title

Longing for something
Wishing to see true beauty
My eyes need a rest.

Sunday, September 20, 2009

My thoughts exactly

Dear God
Hope you got the letter and...
I pray you can make it better down here
I don't mean a big reduction in the price of beer
But all the people that you made in your image
See them starving on their feet
Cause they don't get enough to eat
From God

I can't believe in you

Dear God
Sorry to disturb you but...
I feel that I should be heard loud and clear
We all need a big reduction
In the amount of tears
And all the people that you made in your image
See them fighting in the street
Cause they can't make opinions meet about God

I can't believe in you

Did you make disease
and the diamond blue?
Did you make mankind
after we made you?
And the devil too?

Dear God,
Don't know if you noticed but...
Your name is on a lot of quotes in this book
And as crazy humans wrote it
you should take a look
And all the people that you made in your image
Still believeing that junk is true
Well I know it ain't and so do you, dear God

I can't believe in
I don't believe in
I won't believe in heaven and hell
no saints no sinners no devil as well
no pearly gate no thorny crown
you're always letting us humans down
the wars you bring
the babes you drown
those lost at sea and never found
and it's all the same the whole world round
the hurt I see helps to compound
That Father, Son, and Holy Ghost
is just somebody's unholy hoax

And if you're up there you'd perceive
That my heart's here upon my sleeve

If there's one thing I don't believe in...
It's you, dear God.

--Andy Partridge, XTC

Clarity at post #500

It came to me in the car. Suddenly, the future was no longer dark and hazy. What I needed to do seemed so clear and so doable. I just needed a plan--a real one, not a collection of abstract thoughts and possibilities.

The plan formulated itself in my brain before I finished my commute. Clarity. The plan, the things I need to do, no longer overwhelm me.

Before I can achieve true freedom, there is some work to be done, some personal housekeeping. I can do it. I will do it.

My options will have no barriers.




I can see it so clearly.

I am ready now.

Wednesday, September 16, 2009

It's not shiny--it's brilliant!

This is jewelry I would buy, but then I'd have to explain it to people who wouldn't understand anyway. But it is pretty awesome!

It's the Seratonin necklace from the Molecule Jewelry Collection.

Click here to see the full details.

Monday, September 14, 2009

But, but, but...

Wherein May screams...


When I forgo niceties so I can shell out $200 for a pair of tickets to a show I waited months to see, I expect to see the show in its entirety, not with the last half-hour (of a two-hour performance) omitted. ESPECIALLY WITHOUT EXPLANATION OR APOLOGY.

I thought Frank was going to cry, I really did. I can't remember the last time he looked so sad. The parts he had specifically wanted to see never happened.

Wow. Wow. Wow.


And that's all I can say without revealing too much about myself.

Sunday, September 13, 2009

Whining email to Jolie

Many, many thoughts rolling around in my head. I'm coming to terms with some things, and that kind of transition is never easy.

  • I will never feel better. This is as good as it's going to get emotionally and physically. This is a disappointing substitution for wellness.
  • I am apparently incapable of experiencing happiness (although I still can appreciate some humor).
  • I struggle to be who I need to be.
  • I lead a painfully boring life, but I have neither the energy nor the means to change it.
  • My best work is behind me.
  • My best ideas have already come and gone.
  • My best days have passed.
  • I've done whatever it is I was going to do
  • My sense of compassion is shrinking a little more each day. It was my last redeeming personal trait.
  • I rarely do anything right or as well as it should be done.
  • I don't have much to offer anymore--I think I passed my "use by" date.
So, what I have left is the hard work of maintaining the appearance of worth. I have to work to pay off my debts and that means being cordial or possibly even pleasant toward people I can't stand. I need to sort through the physical clutter in my world so I can put my past away for good. Photos, boxes of papers, cards, notes, junk and all of the other things taking up space in my world need to be managed. I should really sell my bikes. Frank has waited long enough for me to come to terms with that part of my life.

My disengagement and need to clean up are the same at work as at home.

Sometimes I imagine leaving--just leaving--but not starting over. Not starting something new. It's more like wanting to downsize. Just me, bare necessities, living someplace isolated and needing only enough money to keep the car running and to have some food in the very small house. (I would call it a cottage, but that sounds pretentious.) Nobody would be able to find me or contact me. I think this is what my life needs to be.

If I can live in a situation where I have no expectations and no one has any expectations of me, that would be ideal (unless it's prison).

Thursday, September 10, 2009

ready to pop

So many thoughts...the Brainucopia is bloated but without the ability to push those thoughts into well-formed phrases. It's uncomfortable. Mental constipation.

Tuesday, September 8, 2009


My mom has been safely delivered to the airport. Now it's all up to American Airlines to see her safely to Florida.

My husband said he is starting to understand a lot about my life before he met me. It wasn't that he didn't believe me; it was just that what I have described has been so foreign to him, it was too abstract for him to be able get any real grasp.


Saturday, September 5, 2009

I blog, therefore I am...what??

The joy of working in an old building is, well, there is no joy in that. Living in an old building may net you some charm factor, but old commercial buildings tend to crumble around you and let you watch the entropic dissolution. One thing that happens when your building has high historical significance is that a charitable foundation will step up every now and then to pay for some restoration work. They started a few years ago by patching the roof and upgrading the electric. This summer's project felt like a big, shiny gift, wrapped up in yellow-and-black caution tape and meant just for me. The world's oldest restrooms finally failed to the point that they couldn't pass any public code in any developed country. I have bathroom issues. I must have peace and quiet. I must have cleanliness. I must have functioning toilets. Without access to these things, I cannot tend to my own functions, and things being the way they are with my body, that's courting disaster. Imagine my delight upon walking into the ladies room only to see no stalls, no toilets, no sinks. Paper towel dispensers were still in place. Oddly, they had been replaced first, last winter, but the high-tech, motion-activated units looked woefully out of place among the vintage porcelain and under the light of the bare light bulb meant to illuminate the space. About two weeks ago, the restroom was re-opened (what I did in the meantime is a whole different post). It is bright, it is pristine, it is modern, and it was worth the wait. The room still holds the smell of ivory-colored oil based paint in the air. The new stalls align properly with the doors, and the doors lock. One week ago, I walked into a stall and was horrified to see that someone had boldly and broadly tagged the stall wall with a fat-tip marker. It wasn't even a proper tag, just a three-foot wide scrawled, jagged line. A custodian had tried to remove the marker, but the stall's paint was damaged in the process. I took this affront to decency and respect for property personally. Who would dare to do this? What would make someone come into the building (it is open to the public), use the restroom, and think, "You know, this clean and lovely space really needs to be defiled." I do not understand vandalism. Graffiti is one thing--in some cases, it passes as art. But tagging? Tagging is intended only to mar something for no practical or justifiable reason. Want to make your mark? Get a tattoo. My inner older-person-Republican reared her indignant head about this in the staff meeting room. A colleague--a social worker--said, "Taggers do that to show they're here." I wondered... if they wanted attention, why not dye their hair pink? My colleague, we'll call her Cheyenne, said, "No, it's about identity. It's like, it's like people who have blogs." She had my attention, albeit through narrowed eyes. I didn't like where this was going. I asked her to elaborate. Cheyenne said, "Yeah, people who keep blogs, what's that about? It's about being heard. It's about saying, 'hey, look at me--I exist, even if you don't care.' Bloggers do that because that's their platform for attention." "No, Cheyenne. Here's why it's not like that. I maintain four blogs and although each serves a different purpose, none serves to damage anything. Yes, I blog in a public forum, but nobody is forced to participate in my process. Tagging is a toddler's unfiltered rage channeled through a permanent marker in the hands of a belligerent adolescent. There is no meaningful expression, especially if the scrawl is illegible." Cheyenne looked...surprised. She tried again. "I mean, check it out, check it out, OK? Taggers want to be seen, they want to feel they have an identity. They're trying to establish self-esteem. Bloggers will write about anything they feel when they feel it because they want a reaction. The reaction gives them self-worth." "No, no. It is not a parallel expression. I have kept a journal since I was about 14. Three years ago, I put it online because I thought that sharing my words--or at least making them available--seemed like a way to maybe broaden the conversation going on in my head. It was never important to me to have anyone else read my blog. People do read it, though, and we sometimes have thoughtful discussions about the subject matter. I have to tell you, Cheyenne, I don't think any one of us is establishing our self-esteem or reveling in our identity--especially since we all use fake names. If you want to compare, writing requires thought; tagging does not. Blogging requires commitment; tagging requires a magic marker and a muscle spasm. Blogging may lead to thoughtful or thought-provoking discussion and building of community; tagging? I don't think so. And seriously, how god-awful small does someone need to be to gain self-esteem from destroying property and scrawling an unintelligible streak with a magic marker?" Cheyenne thought about that, and said, "Well, the people who do that are expressing themselves through rebellion." I had to get back to work and I spent the rest of the day still pretty sure that Cheyenne didn't understand my point any more than I had understood hers. I was also pretty sure that blogging didn't make me feel any more or less invisible than I felt before I started doing it. I think; therefore, I get a head full of thoughts. I think many thoughts, therefore I blog. There are not enough magic markers in the world to express everything that is spilling out of my head. When I think, I write. I write a blog. I write a blog and I don't deface anything in the process. Blogging doesn't reassure me of who I am; it helps me understand why I am who I am so I can do better next time. I blog; therefore, I evolve. And I know I'm here, even if nobody ever reads a word I write.


My mother is here. So far, low drama. She can barely walk and she has been scratching her shins bloody. I explained that she has sciatica because she lives almost constantly seated. The itching in her legs is a form of parasthesia caused by slow circulation. It is a vein problem--she knows that--but the best way to treat it is not a second surgery--it is movement.

When I mentioned that walking around her housing complex once a day or doing some very easy stretches, she won't feel the tickling itch that drives her to gouge at her skin. She said she has no interest in stretching.

If you could see the carnage, you'd understand my concern. While she's here, I plan to do my best to convince her that she is a staph disaster waiting to happen.

Otherwise, we need to figure out some activities that don't require lots of walking or any shopping. As long as my mother doesn't work my nerves too much between now and Tuesday 5:00 p.m., we'll get through this OK. Here's hoping.

Friday, September 4, 2009

what to do

I've been trying to cut my daily 1200-1500 calorie load down to 900. It's easier said than done. I probably went over the 1500 today because I'm made of weak stuff. I had
about 1.5 cups of whole-wheat shredded wheat with soy milk,
an apple,
a Weight Watcher's macaroni and cheese entree (270 calories, 2 grams of fat),
a nectarine,
15 wheat thins,
a 100-calorie skinny bread,
a slice of cheddar cheese (possibly reduced fat),
a small glass of white wine, and
a square of Ghiradelli chocolate

Not so long ago, I used to spend three hours a day working out at the gym, in addition to riding my bike to work. Now I have to nap after watering the patio plants and the garden. Oh, how I wish I were joking about that.

I heard that some insurance companies are going to start charging a fat tax. If you're overweight, obese, if you smoke, you'll pay higher insurance premiums. I'll have no problem with that if Great West Now A Part of Cigna uses that money to provide me with a visiting personal trainer at least twice a week, and the services of a Skype-based nutritionist. Otherwise, they'll just piss me off for lumping me in with the people who eat 3,000 calories of fried, sugar-laden crap all day long. I'm not one of those people.

Thursday, September 3, 2009

Stripping away the rhetoric

Republicans get sick. Liberals get sick. Independents and politically unaffiliated persons get sick. Illness doesn't show any particular preference for one opinion over the other.

I lived a good piece of my adult life without adequate health care, and at least ten years of my life with very little money and no insurance at all. During one of those periods, I had a classic household accident wherein the palm of my left hand was impaled by a seven-inch Henkels chef's knife at a depth of about a quarter inch. It bled. A lot.

The wound hurt tremendously, but not only in my hand. The pain radiated through my fingers and up through my wrist. I could not bend my middle finger, and my ring finger no longer had full funcionality. Mostly, though, it hurt and bled a lot.

I did my best to clean the wound and close it with butterfly bandages (because you can't buy sutures unless you have a license). I took Ibuprofen and applied ice packs. I feared that my hand would never recover. The only consolation came from knowing I hadn't severed any body parts in the mishap. I had really needed a trip to the emergency room, but there was just no way I was could afford it. I couldn't even afford urgent care or a family doctor. The long-term outcome for me has been a left hand with occasional mild pain and one finger that will never completely bend to the full extent it should. No insurance, no money, no help when I needed it.

Since my current health odyssey began in 2003, I have often taken pause to think about how things would have progressed if I hadn't had medical insurance. Even crappy insurance, which was the case in the beginning. The deductibles are huge. The medications are expensive. The blood work needs to be done on a regular basis. Doctor appointments are not optional.

My husband works for the state, and we live in a state where mental health care parity is mandatory for any insurer doing business with the state or providing insurance to state employees. Millions of other people don't benefit from this safety net. Many insurers will do anything to get out paying claims, and even more to avoid paying for behavioral health expenses. Always the bastard stepchildren.

Within the shouting, confrontations, and misinformation being spread about changing America's health care system, there is a simple truth being missed: People are sick. People are sick with insignificant illnesses that they can't afford to tend to and those small problems are becoming big problems that cost everyone more money. Sometimes they cost the patients their lives and other lives are irrevocably impacted.

Tonight when I logged onto FaceBook, the same message appeared again and again on my new feed:

No one should die because they cannot afford health care, and no one should go broke because they get sick. We are only as strong as the weakest among us.

If you agree, please post this as your status for the rest of the day.

I shared this with my family members via email. They love me, but they are conservatives in a big way. I doubt they'll understand how close to home this issue actually has come.

Tuesday, September 1, 2009


This CNN online headline caught my eye. Not that it isn't tragic, but...
FAA safety inspector dies as helicopter hits house

Monday, August 31, 2009

This one is for Sophie I.T.M.

I stepped outside into the cool night air before getting ready for bed tonight, looked up, and saw a wonderous sight. The moon is bright orange--a result of the fires in California.

For a better look, click on the picture.


Put me out of my misery. If I can't have the me that worked so well for so long, I'm not interested in making do with this bland, colorless, unappealing version.

Fuck it.

Saturday, August 29, 2009

Godspeed, Ted

You're going to be missed. Your friends, supporters, and even your opponents came forward to say that you were larger than life, passionate, and committed. You never stopped fighting the good fight--many good fights--continuing on even when you were starting to fight the illness that eventually took your life.

I'm glad you never became president. If you had, you never would have been able to flourish with your imperfections. Some of your most important work never would have become reality. Despite your own privileged upbringing, you were always able to champion the cause of the average, working-class American, including the most downtrodden among us.

I was never what one would call a Kennedy fan or supporter, but I had a deep appreciation for the issues you were willing to take on as if each was a personal burden. If ever I had had the opportunity to meet you, I would have thanked you personally for your legislative work that made my life a bit easier to live. It wasn't limited to just one thing, either. I appreciated your ability to see the bigger picture and future impact when choosing your Congressional battles, particularly in your tenacious and hard-fought work to establish mental health care parity. It was an unpopular issue that you defended fearlessly and for that, you have my deepest gratitude.

Now, let the sails billow with a late summer wind heading toward the horizon.


Thursday, August 27, 2009

Every victory has a taste that's bittersweet.
--Mark Knopfler, Dire Straits

This really should have been included in the post titled, Well said. It's quite suited to accompany Kaye Redfield Jamison's quote about being a lesser version of herself once she became stable.

The song, On Every Street, is the first song on my iPod's "Sleep" playlist. The entire second half of the song is a four-chord phrase that repeats and builds from something spare until it becomes a lush blend of four instruments played to their potential. It is stunning.

And then it's over.

Wednesday, August 26, 2009

Sometimes it feels bad

I am unliked by those who know me.
I am unpopular.
I am insignificant.

I fully understand why. This is not among the mysteries in my life.

I am the leftover piece, the piece that never fits. There is no right place in the wrong context.

Alone is a state of being.
Alone is an empty feeling, a jar filled with gravel.

Sometimes, the pain in my heart is almost unbearable. With whom do I share these thoughts? Well, nobody. Jolie is far away and beset with deep troubles. Frank has no comfort to give right now. Joanna appears to have bowed out entirely.

That's the entire roster.

I am on my own. Blogging can't address every difficulty in my life. People can't, either.

I'm quitting therapy. It's useless in my situation. This is a bit of a bipolar slide, but being sad is much more acceptable socially than the churning storms of a mixed state.

There is no hope. The box of hope has gone missing.

Saturday, August 22, 2009

Well said

This Saturday night, the Brainucopia is full of feelings, thoughts, and ponderings. I was looking for a quote that could describe how I feel about Facebook, somewhat believing that would be an impossible task. Turns out I was wrong.

We seek pitifully to convey to others the treasures of our heart, but they have not the power to accept them, and so we go lonely, side by side but not together, unable to know our fellows and unknown by them.
— W. Somerset Maugham

Somewhere amidst the many quotes I found about all sorts of fascinating things, words uttered by people far more clever than I will ever be, was this one. It's near and dear to my heart not only because of who said it, but because she did such an astounding job of describing my life when she wrote about her own.

"I compare myself with my former self, not with others. Not only that, I tend to compare my current self with the best I have been, which is when I have been mildly manic. When I am my present "normal" self, I am far removed from when I have been my liveliest, most productive, most intense, most outgoing and effervescent. In short, for myself, I am a hard act to follow."
— Kaye Redfield Jamison, An Unquiet Mind: A Memoir of Moods and Madness

What I had really hoped to find was a quote about illness, the unknown, and uncertainty. Or, perhaps one about whether it's better to know or not know. Maybe one about a situation appearing to be headed from bad to worse. Thinking about it all made me wonder if I might derive any sense of relief from being able to say, "It was never bipolar disorder. My behavioral health was wrongly accused of offenses that were actually rooted in something much more socially acceptable but with far more terrible consequences in the end."

That's a lot to think about when you think about it.

Photo by me, last week.

Friday, August 21, 2009

Dilemmas of anonymous blogging

I just read this article on CNN online: The coming-out stories of anonymous bloggers.

It starts like this:
By John D. SutterCNN

(CNN) -- Blog fans in Pittsburgh, Pennsylvania, saw PittGirl as their masked superhero -- a comedian and local commentator who jibed the mayor without reserve and ranted freely about her hatred of pigeons.

Virginia Montanez says she was fired because she revealed her identity as a local blogger.

But despite her effort to keep her real name secret, people started to figure out who PittGirl was.

Feeling pressure to take control of her identity before someone else outed her, PittGirl on Wednesday posted pictures of herself on her blog and introduced readers to her real-world self: Virginia Montanez, a 35-year-old married mother of two who worked in the nonprofit sector.

"My friends and family call me Ginny," she wrote on her blog. "But you can continue to call me Your Majesty, because I've grown accustomed."

On Thursday morning, Montanez was fired from her job because of her online persona, she said.

Thursday, August 20, 2009

Wednesday, August 19, 2009

Staycation, day, oh, I don't know

Note: I am on vacation; therefore, there is no proofreading at this time.

The to-do list was long. It's still long. I haven't accomplished much. My intentions were good, but frankly, I'm tired. Much more tired than I thought.

I'm ready to go to the island with Jolie. Our island. It's our plan. We're going to go to an island where we will be the only inhabitants. We will not have to take meds because nobody else will be there--there won't be any need to be anyone other than who nature intended us to be.

We understand each other. We don't offend each other. Much. If we do, it's no big deal. We've learned not to take things personally.

When I told Frank about the island, his immediate concerns were pragmatic: "How will you get supplies?" I said we'd have them airlifted and dropped from planes. "Well, what if you get sick of each other and one of you kills the other?" I replied, "We probably had it coming."

Frank got quiet and asked, "Can I come visit?"


The other day I interrupted Jolie's peaceful retreat from civilization with a phone call. My loneliness was getting the best of me. the boredom was even worse.

"Jolie, I always thought I would be a world traveler. The bad thing about FaceBook is that I'm finding out that everyone I ever knew has traveled extensively while I've been driving in circles."

I don't think Jolie can really empathize here. She's already covered, like, half the planet. I tried to explain that I was supposed to be a world traveler. It was my plan and I thought it was my destiny. I had already been to South America twice--without my parents--by the time I was 18. Now I'm on vacation and I've put 14 miles on my car since August 7. There is no travel now or in my future.

Jolie asked me if I have a passport. Oh, great, now I'm going to really look like a loser.

"No, Jolie, I do not have a passport. The one I got in 1976 expired in 1981, and I haven't had any need for a new one."

"But what about when we go to our island?"

"Jolie, if we're the only ones there, we won't need passports. It's not like there's going to be any immigration or TSA people waiting for us."

She thought about that and said, "Well, there could be processing en route."

Good point.

"Here's the thing. I thought about getting a passport in case I needed to flee the country or something--especially during the Bush years. I filled out all of the paperwork, but I hated how my picture came out. I went to a different place and got my picture taken again, but I didn't like that one, either. I put the passport application aside and when it was almost ready to expire, I got my photos retaken. They weren't any better than the previous ones, so I threw them away and shredded the application. That's why I don't have a passport."

This vacation, I had a budget of $50 for the entire two weeks. That kind of puts the whole passport issue into perspective.

On a related note, I've been taken aback by the number of people who suggested camping as a vacation activity. Oh my god, why do people camp? I can't think of anything worse for a vacation, except for ending up on that show, "Locked Up Abroad." Camping? Seriously? Outside? Where there is either no bathroom or one I would have to hike to in the dark when I wake up in the middle of the night? Plumbing. Without 21st Century plumbing and electricity, trust me, it won't be a vacation.

Frank will only travel to countries where English is the first language. I will only travel to places with good plumbing and modern bathrooms.

Perhaps this explains a lot about why we don't travel.

My brain is off

It appears that my brain has no thoughts to process, or else, it's not trying very hard.

However, the word of the week is: parasthesia.

Yes, I think my brain has locked up. Hmm. Didn't see that coming.

Friday, August 14, 2009

Better late than never

When I graduated from college, I had to move back to my parents' house. Having paid for my college education myself, I was absolutely broke. It took a year, but in January 1985, I packed up my stuff and moved into my first apartment. I had a roommate, and it was she who had invited me to live with her since her roommate at the time (her sister) was about to get married.
Our apartment was in the center of town, above the Army-Navy store. Just around the corner was the storefront gallery of a local artist whose work I loved. I used to stand on the sidewalk and wish that I would someday be able to afford one of the watercolors or lithographs on display in the window--many of which depicted Doylestown streetscapes.

When my 24th birthday came a few months later, my roommate was waiting for me as soon as I woke up. She handed me a heavy cardboard tube and said, "You can't even imagine..."

She was right.

The tube held a lithograph of David Frame's print, Dance. Frame had pencil-signed the print and written a birthday message along the bottom of the paper. I was astounded.

Dance by David L. Frame, 1976

I knew how much this print cost, and I couldn't imagine how my roommate, a college student, had been able to buy it. She told me that she stopped in to take a look at the lithograph a few days before. She asked the man who was sitting there reading a magazine if the gallery had anything small she could see. They didn't. He asked her why it had to be small and she said, "Because I know that I can't afford anything big."

My roommate went on to chat with this guy for quite some time. She explained that she was shopping for a birthday gift for me, that we were newly on our own, both totally broke, and that I loved art and was generally interesting. She told him that I traveled overseas without my parents--twice--as a teen and that I spent my senior year in Chile. She also explained that I had just graduated with a degree in communications/broadcasting/journalism, but I hadn't yet broken into the field. She also said that I had a nice collection of coffee-table art books, but that I had never been able to buy a "real" piece of art. In fact, I didn't have one thing to hang on the wall of our apartment.

She mentioned that she was standing in this gallery because I absolutely loved David Frame's work. The man asked her which subjects I liked and she pointed to Dance. She said that I was so taken with the print, that I had stopped in several times just to look at it.

The man said that in order to show her some things I might like, he needed to know how much she could afford to spend on this gift. She told him, and it was about half of the selling price of Dance.

And then it happened. David Frame introduced himself as the artist, saying that being the artist qualified him to be flexible in his pricing.

I never had the money to get the lithograph framed. Something always came up, or I was in the process of moving, or sending money to my parents, or needing a car, or paying for graduate school, or something. Every year around my birthday, I would take the picture out of the tube and just look at it before tucking it away for another year.

This went on for too many years. This year, I decided that I wanted to spend some money on something that wasn't medical or pharmaceutical in nature. One Saturday afternoon, I took the tube out of its storage spot and headed out to, of all places, Hobby Lobby. I had a coupon.

There is something about this picture. The framing technician unrolled the print and weighted the corners with little sandbags. After a day full of baby pictures, ten-dollar posters, memorabilia and the other things people want to frame, he was stunned to be looking at, as he said it, "the real deal."

I gave him the short version of the story of how I got the print and what I knew about the artist. He stepped aside to take a call, and gradually, a small group of people gathered around the Frame print. Everyone was taken with it, and everyone had questions. I love this picture and I was glad to be able to tell about it. The framing shop manager came over and asked if I needed help. I said, no, I was waiting for the other framer to finish his call. The manager immediately fell in love with the print and asked me a lot of questions about the artist and about Bucks County.

Then he asked me why it had taken me 24 years to get the picture framed. I explained about finances, grad school, life, and my recent medical expenses, as well as the financial realities of my choice to work with refugees. I said, "I still can't afford this, but enough is enough. It's time."

When my framing tech came back, his boss called him aside and talked with him briefly. The tech came over and said, "My boss wants me to do this job for you for half price, no strings attached."

And so it is that I finally have this large, gorgeous picture prominently displayed in my little house. It looks perfect.

David Frame's bio/obituary.

View some of David Frame's art by collection