Quiet reflection at the core

Every day, I wake up and ask myself, "Can I still do this? Is today the day? Is it worth the effort? Is it worth the effort to fake it at least?" Every day, without exception.

A few years ago, I promised myself I would not force myself to live if I could not see a reasonable return on the investment. Every morning, upon opening my eyes, I need to take stock and evaluate my situation. There are always pros and cons, and how the list is weighted to one side or the other changes almost daily.

For me, having bipolar disorder is very difficult. The symptoms themselves are distressing, but there's more to it than that. The constant, chronic side-effects of medication frustrate and disgust me. Just having to take medication is a constant reminder that there is something terribly wrong with me and it cannot be fixed. I would prefer to have a surgery or a cure. Perhaps "prefer" is not the right word. I want these things to be reality so I can live a normal life. A normal life. More on that in a moment.

The argument can be made that there are millions of people who take daily medication, but here's the part that grinds into my spirit: When you have a chronic illness, you have it alone. When you have a brain-based illness, you can't even tell anyone, so there is this incredible isolation that, for me, is incredibly painful.

I am expected to take medication not so much for my own benefit, but so I can be socially appropriate and not be a bother or source of discomfort for other people. I have yet to meet someone whose interest in the treatment of a patient like me had more to do with getting us to feel better nearly as much as they just wanted the odd and sometimes offensive behavior to go away. I believe intervention is always about behavior and judgment and has little to do with concern for the sick person's health. I have yet to meet someone "normal" who has proven me wrong.

From this observation and belief, I have come to feel a tremendous, pervasive pain inside of myself. What makes me feel so burdened is this truth about suffering alone. I have an illness I cannot tell anyone about. It is a secret, something that must be hidden and kept to myself. There is the reality that nobody really wants to know, but there is also the paradox that those who might want to know what affects me so profoundly will be the very same people who will judge me for it. How can a patient be judged for being ill? Are people judged for their asthma, lupus, or epilepsy?

I cannot let anyone know the truth about me. They might overhear me say that I pay $300 per month for medications. They might see that I am prone to dark moods. Nobody notices the really good moods because, culturally, everyone likes those and so they can't possibly be seen as a problem. When I was first diagnosed, both my doctor and therapist cautioned me to be very, very selective in whom I told about my illness. They both acknowledged that this was a shitty way to have to go through life, but we do not live in a culture that is forgiving of or welcoming to people with this particular illness. The stigma is real, and it is prevalent--even within the medical community.

My secret is an actual physical heaviness I feel inside. It feels worse some days than others. On the worst days, I find it hard to breathe because the heaviness is too consuming, sucking all of the oxygen out of my body. This is a lot to carry. I can't tell anyone why I'm weepy today or why I may not have slept in a week or why I can't stop talking--and a mile a minute, at that. I live in a state of near constant sadness. It's not depression, it is loneliness. How can I be expected to live an integrated and productive life without ever being able to just be who I am? I am constantly vigilant in my self-monitoring so as not to reveal a symptom or tell-tale behavior. I am exhausted from the effort.

This secret, this loneliness, this knowledge that judgment is always lurking if given the opportunity, this is what drags me to the place where not living is far more appealing than living yet another day of a tightly compartmentalized life. To admit what is wrong with me is to invite skepticism and scorn. Bipolar disorder is the stuff of tabloid rumors and social mockery. Revealing the illness immediately invites a near total loss of credibility, one that, no matter how hard one works to prove his or her lack of a disability, will still be thrown into that's person's face at the first slip up. It doesn't matter why we make mistakes, get angry, have moods, or achieve amazing success. Either way, the mention of Bipolar disorder will surface as a disclaimer or accusation, depending on the situation. I find this to be a particularly cruel reality. and it is a reality.

I need to work. I need to function. I need to remain integrated into the greater world. I am sick. I cannot tell and still have the life I know. This is the Gordian knot that binds me into loneliness and sorrow. I am trapped with this illness that has no cure, only a deeply entrenched stigma.

I have nobody to talk to. I can blog, journal, ruminate, go to therapy or support groups, and read the words of others who are similarly afflicted, but at the end of the day, I am still alone, still living with a secret, still unable to have close friends, still living in fear of being ostracized, marginalized, and even more isolated.

This is a hard life to live day after day. I am increasingly less sure it's worth it.

It's official. My boobs are weird.

It is a quest that has spanned over a year, many,many stores, and countless brands and styles. No bra seems to fit me.

Today I went to the charming boutique where I got lingerie for my wedding. This place is like the cathedral of all bra knowledge. It's the kind of place where just after you walk in, the owner will look you over and produce exactly what you need and in the right size.

I explained my fit problem to her. I also explained that since I had shingles, I found wearing a bra to be almost unbearable. This makes fit especially important.

She whipped out her measuring tape and hurried me into a fitting room. She measured and measured again. She clucked her tongue and bustled out of the fitting room. She came back with one bra. One. It is the one I bought for the wedding. It hurt just to look at it, and as soon as I had it on, the saleswoman scowled and kind of bit her lip. She left and came back with another bra. That one sort of fit, but if I'm going to fork over $67 for a bra, I want it to fit like it was made just for me.

And that was it. That was my entire selection. My friend who was with me, though, the one who takes a 32D, had an entire drawer full of delicate, lovely, sweet bras to try on. They all fit and they all looked perfect on her.

The saleswoman came back once more with a whole bunch of C-cup bras. I told her there was no way, not even at my current 181 pounds, I would ever fill a C cup. She told me try on a few anyway. After the second one, she got the message loud and clear. May is not even close to a C cup.

So, I muddle along with my impossible bra size, lingering shingles pain, and a collection of very utilitarian bras that don't quite fit. Sigh.

8-27-08 12:11 p.m. My backyard

(Click on the picture for the really psychedelic view.)

Truth in advertising and then some

It's been a while, but it's time once again for May's Adventures in Customer Service. My husband and I are looking for a headboard for the guestroom. We decided to look online to see what we might find in stores. One local retailer had a nice headboard that might work. Read carefully:

• Solid Pine Construction
• Iron Scroll Accents
• Wax Finish
• Guaranteed to Warp, Crack and Split
• Hand made in Mexico

After reading and then re-reading the description, I felt I had to send an email to the company. Here is the transcript of our e-conversation.

Dear Furniture Store:
My husband and I have been shopping around for a headboard. We saw one we like on your Website, and after reading the description, we would just like to clarify something.

The description for this item clearly states that this solid pine headboard is: "Guaranteed to Warp, Crack and Split" Since the piece is only wax finished, we can see that this description is certainly plausible, but we just wanted to make sure we understood this correctly. Thanks for clarifying.

Hello May,
Thank you for your inquiry, The description is true and accurate, the piece as many others we carry is of solid construction pine wood in rustic style. Once again thank you and we hope to hear from you soon.

Henry Guzman
Online Sales Manager

Mr. Guzman,
Thanks for your prompt reply. So the wood really is “guaranteed to warp, crack and split” as it says in the description? That was the part for which I needed clarification. We have other furniture that is similar, but it hasn’t self-destructed as has the furniture described in your product listing. Good for you and your company for being so honest about the furniture’s future behavior! This is helpful to know and we do appreciate the honesty.

Get your Twinkies on

When's the last time your artistic senses were tickled by Jell-o, paint, Cap'n Crunch, and Twinkies?

Sometimes, the cure for momentary boredom is creativity. Even if you don't feel creative, you can still take a shot at making something original. It's fun, it's silly, and despite the description, it's not messy at all.

Take some time, make some art. Save it if you want, or just leave it and go on to something else. Your canvas is virtual, your medium is mostly junk food. It's more fulfilling than you might think.

Click here to enter your studio. Your tools are across the top of the screen. Your cursor is your paint brush. When you finish your work, type a message to the masses. Preview and then keep, send, or have an artist's hissy fit by trashing your canvas. This is way better than fingerpainting. No mess! No more stress!

Have fun.

I love the Internet.

Four hours

Four hours of sleep. I actually slept, so that in and of itself is a miracle. I want to live without Ambien. It was never intended to be a long-term medication. There is some concern in the medical world that nobody knows what long-term effects this drug will have on the brain and brain wave patterns. My brain has been smacked around enough. Let's give it a little love and try to do without the Ambien. I'm becoming immune to it anyway.

I'm tired. I want to take a nap. Nap = bad. Falling asleep in front of the TV = bad. Must stay awake all day.

It's a gorgeous, sunny day here. I should probably step away from the computer and do something outside. I'm avoiding that because my back patio is full of handmade textiles that need to air out. They smell like mothballs. They spent quality time in a jungle. If I go outside, I will be reminded that all of those things need to be ironed or steamed because they're terribly wrinkled. I can't tell you more about that whole story because it's connected to a part of my life I don't share here. Trust me, it's interesting.

I was outside earlier today, trying to clear my head and not think about life so much. The late-summer wave of flowers has bloomed in my garden, so I went out and tried to take pictures. My hand tremor has been pretty bad lately, though, so most of the pictures were out of focus. I did my best uder the circumstances. My husband said he has noticed that my hand tremor is getting worse. He really never noticed the tremor before, but now he can clearly see it.

I hope this doesn't mean lithium is going to fail me. As much as I don't look forward to kidney failure, as much as I hate the weight gain...Lithium works. I am not dead. That's called proof. I live with a nagging fear that any of my meds will crap out. It took a long time and a lot of misery to get the mix just right. I have no interest in revisiting that process, although I hear it's inevitable.

I hate my brain. I hate medication.

My brain is tired. I am tired. Why does everything overwhelm me? Get off the couch, May. Go outside and get some fresh air and sunshine, May. Drink more water. Get a life, May.

Fuschia cosmo

Zinnia

Pink cosmo

Sunflower center

I want to sleep

It's 3:30 A.M. I should probably go to bed. I finally took my evening meds, and now the nausea has set in something fierce. I usually sleep through it. This is my life. I have no hint of sleepiness--none--until I medicate. I could stay up indefinitely, but as I've mentioned before, I don't want to cause my husband undue worry.

Wow. There is nothing on TV at this hour except for infomercials. Half of them are for diet products or exercise equipment. Apparently it's the fat, out of shape people who stay up all night. Oh. Wait. Forget I said that.

To bed I go. Good morning, good night.

I want to believe

Every now and then, I take a stroll through cyberspace to see what the other bipolar boys and girls are up to. Some of what I find is interesting, some is truly incoherent, and some if it is infuriating if not flat-out insulting

Bipolar Chicks Blogging has its moments (they're funny!), but I get a little confused by the group blogging because I can't always tell who's writing. Elsewhere there are a lot of people out there who aren't so funny and who take themselves verrrrry seriously as imparters of bipolar related knowledge. They have a bead on some good information, but their intensity hints of desperation to be taken seriously. I want to be taken seriously, but sometimes it feels like other similarly afflicted people are the only ones even making the effort.

There are the God people. They do not refute the existence of bipolar disorder (I'll get to that in a moment), but they have an unshakable belief that only through God's love will they find relief from their illness. They have a lot to say about God and Jesus, and how prayer and living in Christ's love will lead all of us BP patients to healing. They do not have any advice for atheists like me, other than to accept God into my life or I will live under the curse of BP forever. I had God, I found science, and faith in the omniscient unproven was one less irrational belief cluttering up my already addled brain.

And then there are the other kind of nonbelievers. These are the people who are angry and bitter at having been told they have bipolar disorder. They took medication. It proved uncomfortable. They stopped medication. They found clarity. They found they may have been misdiagnosed all along (didn't they ask questions at the time? Baaaaaa?). Now they have reached the apparently obvious conclusion that not only don't they have bipolar disorder, nobody else does, either, because we can't have an illness that does not exist. Some of them really believe in God, but since I don't, this might make us even.

I knew that Tom Cruise and the followers of Scientology (is L. Ron Hubbard God?) do not believe in mental illness at all, and their vitriolic scorn and skepticism of psychiatry is legendary. What I did not realize, though, is that there are a lot of people out there who believe that the best way to cope with mental illness is to deny its very existence. I have bipolar disorder? No, no, no. There is no mental illness. POOF! I no longer have bipolar disorder! If one could not possibly accept the diagnosis, I could see the case for throwing out the baby with the bathwater, so to speak (not really a BP kind of behavior, though), and declaring the illness to be wholly...nonexistent. There. See? I can't have something that doesn't exist, and--good news--that means you don't have it, either. Or you, or you, or you! A misdiagnosis combined with a failure to ask questions and do one's own homework does not negate the legitimacy of the illness.

I miss Spalding Gray. Nobody could speak about mental illness with the same level of humor and empathy. I was thinking about him this week because (here we go, May's brain in action...) I was listening to Mickey Hart's Apocalypse Now Sessions CD. This got me thinking about war films set in Southeast Asia, which made my brain jump to The Killing Fields, which logically led to Swimming To Cambodia, Spalding Gray's best spoken-word performance, ever. I liked his voice. His voice... I switched to Blue Man Group's The Complex CD, and skipped to the song, Your Attention. Spalding Gray's voice is one of three heard speaking in the background of the song. His is referred to as "the low self-esteem voice." You have to listen to understand. Given Spalding's frequent and candid reflections on his own complex emotional layers, I've always thought his part of the three voices was a sly wink and a nod to those who are in the know.

Anyway, as I stumbled upon blogs and Websites related to my illness, I noticed that many people who have it feel an intense need to write about it. I think we all want to understand it just as much as we want to understand how we feel about it. It's not like it's something you can discuss in polite company. We are alone with our situation but not alone in the greater electronic community. It's validating to be able to compare notes and see how similarly the illness disrupts the lives of all of the good boys and girls whose brains went Pop!

You might want to re-read that...

A message to the three people (that might be a generous estimate) who read this blog.

In a more coherent moment this morning, I went back and edited all of the posts from the past week. In some cases, I had to re-write entire paragraphs to articulate what I really wanted to say the first time around. --MV

Well, I'm not insane

The PsychCentral Website has an array of insightful diagnostic tools to measure your sanity and overall mental well being. You have to register, but that takes less than a minute and the only personal information required is your email address.

Being ever curious about scientific assessments of my mental health, I started with a lengthy tool called the Sanity Score. As it turns out, I'm relatively sane (compared to whom, I'm not certain); however, I have some serious "concerns." Oddly enough, bipolar disorder didn't even register on this test. You're not in serious trouble until your score exceeds 150. Here are the highlights of my test:

Your Sanity Score
116

(The Sanity Score is based upon a scientific algorithm with scores ranging from 0 - 288.)

Based upon your answers, you appear to be experiencing some distress at the moment -- your overall mental health is affected by this distress. People with similar scores tend to experience more difficulty in coping with life, and may feel like they need more help than they're currently getting. Because of this, your mental health could likely use a little boost.

(Subscales range from 0 - 100)

(!)General Coping: 64 People with similar scores as yours tend to feel overwhelmed by life or specific things in life right now. You appear to express a great degree of unhappiness with life right now, which strongly suggests a change would be helpful, such as seeking out professional help or talking to a doctor about your concerns.

Life Events: 31 You're experiencing events in your life that may be negatively affecting your overall mental health and your ability to cope with other things in your life. This may also affect your mood.

(!)Depression: 84 People with scores similar to yours are typically suffering from a moderate to severe depressive episode. This is also known as clinical depression or just plain depression. People who have answered similarly to you typically qualify for a diagnosis of major depression and have sought professional treatment for this disorder. (I'll get right on that...)

Anxiety: 45 People with scores similar to yours are typically experiencing some degree of anxiety, which may or may not be a concern serious enough to seek out professional help. Remember that a little anxiety in normal, everyday life is to be expected and is a good thing. Nobody should be without any anxiety whatsoever, as anxiety is our body's way of telling us that we should pay closer attention to a situation, event or person in our lives (even if that person is ourselves). Scores in this range suggests a person may be experiencing elevated levels of anxiety that may be causing some distress in an individual. The most common anxiety disorders diagnosed are either panic disorder or generalized anxiety disorder.

(!!)Self-Esteem: 100 (ding!ding!ding! We have a winner! Or a loser, if you're me.) People with scores similar to yours express some major concerns with their self-esteem. Self-esteem is most often the product of our upbringing and personalities. It is something that a self-help book or psychotherapist can help a person learn to readily improve in even just a few sessions. (Snort laugh of skepticism and disgust)

Eating Disorders: 40 People with scores similar to yours often have a trait or two associated with an eating disorder, such as anorexia or bulimia. Eating disorders occur due to poor self-image and self-esteem, often as a result of childhood experiences. People with scores similar to yours often go through life with a somewhat unhealthy attitude and approach to eating, but aren't bothered by it enough to seek professional assistance for it.

Your BMI: 33.
Your body mass index suggests you may also be dealing with obesity as an ongoing life issue. (This thing is fuckin' psychic.)

Dissociation: 25 People with scores similar to yours sometimes lose track of time, people, places or events, but not to the extent that it causes serious problems in the individual's life.

Relationship Issues: 31 People with scores similar to yours often have a minor or moderate relationship issue that is causing them some concern.

Physical Issues: 50 People with scores similar to yours often have a physical issue that causes them some concern or effort in their daily lives.

(!)Technology Issues: 69 People with scores similar to yours often complain about having difficulty controlling their time or use of the Internet and other technologies. People with this sort of problem often identify it as being "addicted to the Internet." Some therapists may be able to help you with this issue and reduce your Internet use or use of other technologies so that it interferes less with important relationships in your life, such as those with your friends, family, or significant other. (I'm surprised this score wasn't higher.)

Obsessions & Compulsions: 25 People with scores similar to yours are sometimes diagnosed with an obsessive-compulsive disorder or have obsessions or compulsions that affect a person's life from time to time. Many people who have similar scores live with these occasional obsessions or compulsions fairly well and do not seek additional treatment for them. (We're all a little OCD.)

Posttraumatic Stress Disorder (PTSD): 42 People with scores similar to yours sometimes have a trait or two associated with posttraumatic stress disorder (PTSD), a disorder characterized by reliving a suffered trauma through flashbacks, nightmares or other recollections of the event.

Borderline Traits: 54 People with scores similar to yours often have traits associated with borderline personality disorder. (OK, this result just plain hurts. Seriously. Ouch.)

Recommendations
You have 5 serious concern(s) that we've identified. Generally such concerns should be checked out with a mental health professional as soon as you can. (I'll get right on that.)

You have 9 milder concern(s) that we've identified. Such concerns may be a part of an ordinary person's usual up's and down's in life.

starving

Today's mood started with a Chico's gift card. My sister-in-law gave me one for my birthday back in May. I keep forgetting I have it, and when I do remember, I have trouble keeping track of it. Maybe it's a subconscious block. Why would I want to put expensive clothes on a body like mine? It's ridiculous. Part of me also knows that there is nothing in that store that is going to fit me. Of course, the accessories are nice, but on principle alone, I just can't bring myself to pay $50 for a necklace I can buy at Target for $10.

So, more than three months after I got this gift card, I have managed to stall on spending it. This makes it very difficult to answer the question, "So, what did you buy with the gift card we gave you?" (Stick with me here. This post isn't going where you probably think it is.)

Since I'm on vacation now, I thought I would take an afternoon and torture myself with a trip to Chico's. Buying online is not an option when you are my size and shape. I stayed in my pajamas all morning, and finally got in the shower at 1:00. I ironed some decent clothes to wear. Chico's is one of those stores where the sales people follow you around and pay attention to you and start a dressing room full of clothes you'll never fit into. In other words, I decided to wear decent clothes because I knew someone would definitely be looking. Oh, and the store is in the upscale fashion district that I generally avoid, except to go to the bookstore.

I stepped out of the shower and felt sharp pangs of hunger. I tried to ignore that while I put hydrocortisone gel on all of my itchy welts. I slapped on my EMSAM patch, skipped the lotion, and remembered that I hadn't weighed myself in a few weeks. It is just pointless. Still, I've been really conscious about what I've been eating for the past two months, and I've all but eliminated eating anything between meals. I used to eat fruit or some crackers with a slice of cheese, or maybe a handful of nuts and raisins, but when I gained a pound and a half last month, I could see that even these snacks were harmful to me.

Today I ate what I eat every morning: plain shredded wheat with soy milk, a cup of coffee, and a cup of cantaloupe chunks. Three hours later, my stomach was growling loudly and my hands were trembling. I thought about eating, but decided it would be better to weigh myself first. The numbers popped up in their digital coldness: I have gained another 1.4 pounds.

I am hungry. I want to eat. I don't understand why I am hungry if my body will not even use the goddam calories I dole out to it now. I am eating less and less and gaining more and more. And I am hungry.

I am hungry for food. I am hungry to feel like I am satisfied. I want to stop thinking about every morsel that goes into my mouth. I am starving. I miss food in all its aspects: shopping for it, creating recipes, cooking new things, sharing it, and enjoying what I ate. Now food just gives me anxiety.

I am not sure how much less I can eat without crashing my blood sugar and affecting my medications. Would exercise help? No. Exercise just makes me too hungry to not eat. Any exercise I do is cancelled out by the resulting overwhelming hunger that eventually forces me to eat. Weak character.

While visiting Jolie, I found that when I walked around the house, I tended to keep my head down while I concentrated on the tile floors. The problem was that mirrors were everywhere in her house. Not so in my home. The mirrors in my house are small and generally only reveal a human reflection from the chest up. The only full-length mirror is in the basement storage area, and it is covered in dust. Jolie has huge mirrors that hide nothing. The tile floors are quite beautiful.

This story isn't really about food. It's about love. It's about loss. I have lost many of the things I used to love, and now I am starving. I don't know how to replace them without making everything worse. I don't have friends anymore, at least not anyone physically present within thousands of ZIP codes, and definitely not anyone I can really talk to without having to leave things out. Nobody. Now that I quit therapy, I truly have nobody to talk to. My work causes me extreme anxiety since I worry incessantly that I'm going to do something wrong. I am not good at anything anymore. Nothing comes easily, but I still live under the very high, very mistaken expectations of others who just don't understand that I cannot be the person I once was. My brain is fucking fried, the neurotransmitters don't work, and I just can't do things the way I used to. If I can't have hypomania, I want the rest of my brain back as compensation. Why do I have to give up so much in order to make other people comfortable with what I am?

In a former life, I prided myself on my intelligence, my ability to hide my feelings, my exceptional skills as a liar, and my ability to think about dozens of things simultaneously while keeping them all straight. I was a coherent conversationalist, I was creative and resourceful. I know that at one time, I was an excellent friend, a sincere friend, a good daughter, and someone who was capable of loving other people. None of this is true now. None of it. No matter how hard I try.

I am lonely, and I am empty, and I am starving.

From the New York Times

The New York Times has an entire Website dedicated to informing the world about bipolar disorder. It's great. I highly recommend the multimedia section called "Voices of Patients." It takes about ten minutes to get through all nine commentaries. I skipped the guy who doesn't take medication, only because he is both incredibly annoying and sounds like someone I know but just can't stand. There is something I can relate to--painfully--in all of the other eight stories. This will be insightful for anyone who wants to move beyond a definition of BP and find out how people are defined by the illness.

There is also a recent article about a patient who struggles with BP2, like me. His story and its accompanying frustrations could easily be mine. This article is short but dead-on accurate.

Several stories on the site make a point of mentioning that as many as 20% of people with BP commit suicide. Bipolar disorder is the sixth leading cause of disability in the United States.

There's some not-so-tasty food for thought.

Origins

(I edited this post significantly on Saturday, August 23.)

Last year I participated in a NIMH research study about the genetics of bipolar disorder. Results of this study and its predecessor--which are starting to be released now--may eventually reveal the genetic components that ultimately result in me having bipolar disorder but the rest of my family being spared.

How does it happen? Who passed it along? What parts of ourselves come from those before us and which parts come along randomly? Fifty percent of patients with bipolar disorder have a family historyof the disorder. And the other 50%?

For the most part, there's more stability in my bloodline than not. My great grandfather was an esteemed colonel with a very long career in the army. He was the organizer of the Inter-Allied Games, otherwise known as the Military Olympics, which took place in France in 1919. He also was largely responsible for the estabishment of the YMCA in Europe. He served as part of the Allied Expeditionary Force, whose WWI soldiers were known as the Doughboys. His regular job was as the personal aide to General John J. "Black Jack" Pershing. He was eventually awarded the Distinguished Service Cross, given to those who didn't quite meet the criteria for a Congressional Medal of Honor.

From Great-Grandfather Wait, (yes, his name was Wait), I got my organizational, planning, and project management talents. I did not inherit any of his esteemed athletic prowess.

His son, my grandfather, was a musician and eventually, a drunk. He was also exceptionally intelligent and well educated, but a free spirit who had no interest in the military or the blue-blood life of privilege he had always known. He married my grandmother, a beautiful teen desperate to leave rural New Mexico and her half-Mexican Indian heritage. My grandmother loved fun. She became severely alcoholic, and in a bizarre bit of irony, died sober when the car she was riding in was hit head-on by a drunk driver. My great-grandparents set up a generous trust fund for my mother that should have left her set for life. Unfortunately, my grandparents managed the trust, then mismanaged it, and finally just drank it away.

From my maternal grandparents, I got my love of socializing (now gone), good cheekbones, big hips, a natural instinct for cooking, and a deep love of percussion instruments (Grandpa was a drummer). I also got a strong streak of irresponsible behavior and a lack of financial management skills bordering on a disability.

On my father's side, I am the descendant of Irish immigrants who fled poverty in Ireland to become coal miners in central Pennsylvania. They were steady and reliable folks who lived a no-nonsense, no frills life. They led spare, structured lives centering around family, hard work, education for the males, staunch Catholicism, and frugality.

From this side of the family I got blue eyes, a deeply stubborn nature, and the gift of gab with an additional knack for storytelling. I also inherited a strong work ethic, an innate love of gardening, and the ability to make fabulous pies. I did not get the gene for drinking copious amounts of whiskey and beer or the tendency toward self-denial of material things. I did, however, come pre-programmed with a sense of humor.

My parents. What a disaster. My mother has Borderline Personality Disorder and a volatile nature. She used to drink too much, but that has improved. She is an hysteric who thrives on personal drama. I got her body, and I'm furious about it. My mother has always been a terrible housekeeper with very limited domestic skills overall. Despite his upbringing, my father was an alcoholic who was frequently depressed and anxious, except for when he was viciously angry. He had OCD that worsened as he got older. When sober, my father loved to tell story jokes and to tease his children and their friends, but not in a malicious way. He demanded structure, obedience and achievement from his children, and he firmly believed that children should be neither seen nor heard. For many years, he went to great lengths to keep my siblings and I in line, mostly so we wouldn't annoy him. He wanted privacy, he wanted quiet, and he believed that discipline was best achieved through physical and emotional abuse.

On the upside, he was a voracious reader. He had been an athlete and sailor until his mother couldn't bear the thought of her eldest being so far away, so he came home, became a carpenter, and eventually married my mother.

From my parents I got mental illness, allergies, gut trouble, and a predisposition to being fat. I also got more than one person's allotment of anxiety and low self-esteem, along with the drive to prove my worth through my achievements--which comes with a near pathological intolerance for my own mistakes. On a more positive note, I also got a love of learning and reading. I did not get any athletic tendencies, although all of my siblings did exceptionally well in this area. I believe the roots of my housekeeping deficiencies lay in my upbringing more than in my genetic inheritance. I only mention it because one of the measures for mental health problems on many psychological evaluations has to do with the subject's slobbiness at any given time.

As far as I know, the Bipolar gene in my family tree was recessive and probably dormant for generations. I just happened to hit the mental illness genetic jackpot. My siblings were spared. I have multiple, chronic health problems that have dogged me since childhood or adolescence. Again, my siblings were spared.

My whole genetic soup might make the case for eugenics.

I itch. It's not funny.

Somewhere around Sunday night, maybe Monday night, I got five little welts on the back of my upper left arm. The southernmost welt was on my elbow bone. This is one of those areas you can't see without a mirror, and even then it's just easier to ask someone else, "Do you see something on my arm? What does it look like?"

I thought I had mosquito bites, but since I was pretty much surrounded by the Sonoran Desert, the prospect of encountering rabidly munching mosquitoes didn't seem likely. The itchy spots have continued to multiply on my arms and legs. There may be one on side of my left breast, but I'm too lazy to look since it would mean getting half-undressed. It takes a major effort me to convince myself to make the big change from pajamas to clothes in the morning, so I'll just have to speculate about why that particular spot itches.

Itch. Oh, the itch. These little spots are absolutely evil. I haven't itched like this since the shingles episode. Itching is one of the most maddening sensations the body can produce, I think. I don't want to scratch anything because that might make it worse.

Hives and rashes are a familiar thing in my life. Sensitive skin is a curse. Usually, though, I can do a little detective work (It's called remembering) and figure out what the trigger for any particular rash might be. Not this time, and that's alarming when the situation is getting worse.

Nothing has changed for me: Not soap, shampoo, lotion, clothes, detergent, food, beverage, nothing. Wow. How boring is that? OK, there may have been one thing, but it's unlikely. About ten days ago, I switched to generic Lamictal. Well, I didn't switch, my insurance company did about a nanosecond after Lamictal was available as a generic. That was good for me as it changed my copay from $50 to $10. I never thought any more about it, except when I had to stop swallowing all of my meds at once (9 pills in assorted shapes and sizes) because the lamitrogene pills are decidedly pointy on both ends. Actually, that seems like a hazardous design.

I know that generics are supposed to be identical to the original medications they copy, but I wonder if there are some quality control issues. What if the inert ingredients are different and it changes how the medications are released into the body? What if the dosing isn't right? What if the blue dye is a different brand that induces welts? What if???

It seems especially cruel that I can't take benedryl because it's not compatible with my other medications, including Lamictal. Ah, is that the scent of irony in the air? I should know better than to trust those generics.

So, how many times have you scratched an imaginary itch while reading this? If you would like to know why that happens, check out this story on NPR, The Mystery and Power of the Itch. I heard this story when it originally ran, and found it fascinating, if not a tad prickly.

Bring on the hydrocortisone cream. Quickly.

Now what?

Home again.






Now that my trip is over, I am left with the following ways to fill my time until September 2:

• Sort through piles of mail that have accumulated for months
• Sort clutter in pretty much any room of the house
• Sort through mountains of clothes in the basement (they don't fit and I need to get over it.)
• Pay bills
• Sleep (ha!)
• Read something more substantial than More magazine
• Bake something for my husband
• Cook dinner for the duration of the summer
• Update my iPod
• Try to (once again) teach myself to play my djembe drums
• Clean the house (hahaha!)
• Design a landscaping/hardscape plan for the now-rock-and-bark-chip-free 50'x15' swath of land behind the house.

I will also have to observe my dog. She had a seizure yesterday, and my husband is a wreck. We're waiting on blood work results and then a trip to the neurologist. My husband said that of course the dog I adopted would have a brain problem. Yes, he was kidding.

I have no friends within a range of about 5,000 ZIP codes, so I am already missing the company of Jolie, her husband, and her doggies.

Sigh.

Tomorrow, a story about my favorite addiction, Bijoux Terner and the weird sales clerks who always seem to be there when I am...

The view from here

In 1995, I took a road trip through part of the West. Along the way to Taos, I stopped off and visited the Great Sand Dunes National Monument in southern Colorado. The dunes sit up against the Sangre de Cristo Mountains, on the east side of the San Luis Valley. The prevailing winds etch away bits of the San Juans on the west side of the valley, but the wind cannot maintain the momentum needed to carry the bits of sand over the Sangre de Cristos. All of those little grains carried on the wind have been continuously deposited in the same spot for millions of years. And so it is that the tallest dunes in North America are not along any shore, but rather, sit check-to jowl with the Rocky Mountains in an otherwise innocuous farming valley.

I had read about the Sand Dunes in the AAA travel guide, but I couldn't picture what they must be. As I rounded the curve leading from the toll gate leading into the park, my mouth fell open and I caught my breath. This was one of the most spectacular geological wonders I had ever seen. How had I gone far into adulthood and never heard about this place?

The dunes are the subject of constant study by geologists and biologists. Nobody totally understands them. There is a lot of discussion and speculation, but the dunes are always shifting, always evolving, always revealing something new and unpredictable, even to those who know them best.

I tried to climb to the top of the dunes. I never made it. The whole place is an optical illusion and nothing, absolutely nothing, is how it first appears. I climbed through the soft sand for hours, and was repeatedly discouraged by my lack of progress. I worked hard, I was hot, I was frustrated. I kept going, but it seemed like the top of the dunes kept moving away instead of rising up to meet me. Why couldn't I get there when I could see the top so clearly?

By the time I gave up, I had made it less than half-way to the first summit. This didn't seem possible, given the grueling climb I had made--and for such a long time. Coming down the sand mountain was much easier than going up, but just as tricky. There were places where the slope would just fall away into a deep hollow on the side of the dune. Taking the wrong track could mean having to go further up to circumvent a hollow in order to continue coming down. There was a lot to keep track of in both directions, and no single way to approach it. I have puzzled over this place since I first laid eyes on it.

When I boarded a flight to see Jolie earlier this week, I was happy to have a window seat so I could rest my head against the bulkhead while I napped. I started to doze off almost immediately. For some unknown reason, I awoke suddenly, as if startled, and looked out the window. It took me a second to realize what I was looking at. Beautiful mountains looked like a relief map. Little bits of snow were still tucked into north-facing recesses near the peaks. As the mountains gave way to the valley, I could see an enormous field of textured tan earth that stretched for miles and was almost circular in shape. I couldn't make sense of it, and I hadn't seen anything like it on any flight, ever.

And then, it hit me. I understood what I was looking at. This was the place that had so fascinated me in 1995. I clearly saw the Great Sand Dunes, but from a very different perspective--one that couldn't make sense to anyone who had not seen them the other way, from the ground. I was seeing something I knew, but without my previous frame of reference, I doubt I would have recognized it.



I have known my friend, Jolie, for two years now. Most of our friendship has been spent online, where we have come to know each other through the exchange of emails and pictures, music and favorite websites. One thing that was evident in our friendship early on was that Jolie was in much better shape than I was. To me, it always seemed that despite Jolie's struggles with deep depression, she was able to cope far better than I could when I was at my worst. Now it is Jolie who is not doing well. I feel that my attempts to soothe her intense hurt are woefully inadequate. Seeing her this way has taken me by surprise, as I am so used to our situations being reversed.

This is the first time I have witnessed her struggle up close. I barely recognize my funny, resilient friend, mostly because I have never been physically present to see her this way. I understand what she feels right now because I have been there--too many times to count. I have been there, but I have never, until now, walked beside someone whom I know and love as she feels the depth of that despair and overwhelming pain. I have always been the person experiencing the darkness, not the one seeing it from the window. It is like looking at a photograph of yourself when you had never seen yourself in a picture before.

I ask myself, If this is what I am like when I am profoundly depressed, why are people so judgmental? At my lowest emotional depths, I always worry what other people think of me. They must think I'm pathetic. He must be so sick of me. I am a burden. Nobody wants to be around me. I must look terrible. She probably thinks I'm worthless since I can't fight this thing. Everybody must think I'm such an albatross--who would want me around? Maybe I shouldn't stay around...

Yet, as I spend time with Jolie and watch for her feelings to be revealed on her face, I think none of those things. In fact, nothing even remotely like that occurs to me at all. Instead, I worry. I worry that she'll feel too much despair to keep living. I worry that she's not taking care of herself. I get waves of anxiety because I care about her, but I feel so powerless as I can't do much to change her situation. I hope that at least I bring her comfort. I cannot fix the pathology, but I want to wrap my friend in my empathy so she never feels alone when things get this bad. She is not alone, but how to convey the sincerity and love behind that truth?

As I bear witness to this human tragedy from an outside perspective, I can't imagine feeling inconvenienced or irritated or judgmental as I know others have. No, what I feel are my own despair and sense of inadequacy. I feel what I wish others would feel at those times when I am in Jolie's current situation: Compassion.

When I look at Jolie now, I know I am actually seeing myself as I must so often be seen by others--perhaps hard to recognize for some, and quite changed in demeanor. I know this place, this feeling, this state of being; it's just a bit of a surprise to see it in someone else, let alone someone I know. Despite what I know, this time I am on the outside looking in, looking in at myself, not at Jolie, seeing the excruciating sadness in a way that feels akin to an out-of-body experience.

In my most crushing sadness, I struggle to communicate that I am still me, I am still inside of the illness, but I am very much aware that the people around me think it is my personality that has changed, that I am no longer May. From the inside, I want it to end. Now, Jolie wants it to end. She talks about it as a theoretical, anyway. I may be on the outside with everyone else right now, but unlike most, I know that Jolie has a problem--she herself is not the problem. Nobody wants to feel depressed. The related behavioral changes and irritability are not even the issue; they are the manifestation of a horrible illness deep inside the brain. I get that. Jolie gets that. Why doesn't the rest of the world get that?

I want Jolie to survive. I want her to feel better--a lot better. I want her to find relief, calm, and clear-headedness. Mostly, I want the sadness to simply leave her body. I want to give her hugs that somehow transfer the benefits of my medications through that shared energy. You are not alone; you are not alone. If she can't do it, then what hope can I reasonably expect for myself?

The sand dunes come to mind as I think of Jolie. Flying over them I could see clearly that they were still the same dunes, but I was seeing them from a different and unexpected perspective. This doesn't change their beauty or their uniqueness. Flying over the dunes and seeing them differently gives me one more insight into something familiar, and so it is now with Jolie. I understand her situation from the inside, but it also helps to see it from the outside. You can tell me about the shape of the dunes, but it's too abstract--I have to see them from several sides. I had to see Jolie in order to better understand me. This has changed how I interpret what is part of both of us. This is a good change that comes from a place of knowing and understanding.

Jolie and I have this in common: We are chameleons who adeptly adjust to our situation. We have used myriad coping skills to stay alive in the face of a debilitating illness and an unsympathetic society.

The dunes constantly make subtle changes, ever reshaping themselves to accommodate the uncertain winds. Maybe we are all dunes in our way, unique and beautiful, shifting as we need to if we are to survive the wind that is constantly pushing against us.

Yesterday was a travel day. I am visiting my friend Jolie for about a week. She looks extremely tired and a bit washed out. That's probably normal, given all she's been through in the past six months.

The flight here was uneventful and the views were spectacular. This flight was much easier on me than my last two trips when I was still wracked with shingles pain. Getting a window seat was key. I took a few pictures along the way because I saw some really cool things.

Jolie and I spent quite a bit of time talking about our "differently wired" brains. It is actually a relief to have a conversation about life with a wonky brain, and to know that the other person understands exactly what you're talking about and why it matters. There is no patronizing promise that life will get better. There is no feigned interest in the subject matter. There is a lot of familiarity and common ground. Yes, it's a relief to know we can speak honestly and know there is no judgment. For once.

I'm worried about Jolie. She looks so beaten down. Her spunky demeanor has been replaced by a sadness so deep, she can't even try to pretend she feels otherwise. In a moment of levity, we played therapist and patient today. I asked Jolie all of those questions my therapist asked me for two years. Sitting there and role playing, I realized that during my therapy sessions, I had been giving witty, insightful answers to painfully trite questions. Jolie's answers alternated between painful and painfully funny. She hasn't lost her sense of humor, just the mental energy to use it very often.

I am incredibly impressed by Jolie's progress in her recovery from the motorcycle accident. Her bones and muscles are healing well, and she has been diligent in carrying out her prescribed therapy routine. She is walking well and doing it well ahead of schedule.

The head injury has not healed as quickly. Jolie scowls a bit and tunes out as she works her way through word search puzzles and sudoku. She reads articles about head trauma and impatiently waits for the return of her cognitive abilities. She wants to feel better. She wants to feel happier. She wants to look forward to getting out of bed in the morning. Right now, she doesn't look forward much at all, since there is so much to concentrate on in the moment.

Jolie asked me how I would feel if she died. It was a hard question to answer. I would be devastated, I do know that. I believe that if she had died in the accident or if she were to die as a suicide, I would grieve deeply either way. She is one of the few close friends I have. How would I feel? Sad. Lonely. Lost. Times a hundred. Or a thousand.

My biggest brain defect

Adenosine. Has anyone seen my adenosine? My other peptides and receptors are here. Dang. Where is it??

Say cheese

In about a month, it will be three years since my father died. His death was not a surprise, yet my mother had done almost nothing to prepare for it. She thrives on the drama of a manufactured crisis.

My father used to buy things and intentionally never use them. He would talk about buying something for a long time, and eventually he would get it, and promptly put it away. He also did this with gifts, and if we asked him why he wasn't using something he had claimed to have wanted, he would just say he was saving it. After his death, my mother realized that the majority of the things in my father's dresser and closet had never been used. The price tags were still attached.

His seemingly hoarded possessions consisted of shirts, T-shirts, jackets, socks, wristwatches, books, cowboy boots, a telescope, tools, videos, coffee mugs, jewelry, caps, and cameras, among other things. The camera equipment included a video camera he used less than a handful of times, at least a half-dozen cameras, expensive lenses still in their boxes, and a tripod that had never had the plastic or tags removed.

The week after my father passed away, I was in Florida helping my mother plan Dad's funeral. I asked if she wanted me to go through some of his things so she wouldn't have to do it. I did this because for months she had been saying that when I came down, she wanted me to sort through as much of his stuff as I possibly could. When the time came, though, she said she would just have somebody come in and take it all away. It hadn't ever occurred to her that my brothers, my uncle, or I might want some of these things for our own. She would never think of something like that.

One thing I did take home with me that trip was my father's Minolta 35mm film camera. It's a great camera, and I have used it many times. My dad never quite mastered the automated settings, yet he bought lots of lenses and accessories for it. I thought there were only a couple of photography related things left, but I was wrong. Today, a large box arrived in the mail. I opened it and a 50mm Nikon lens literally fell out into my hand, narrowly missing the hardwood floor.

The box was filled with camera bags that were haphazardly stuffed into the box without any packing material to cushion the contents. Each camera bag was just as haphazardly filled with cameras, lenses, flashes, manuals, and more. Among the equipment, there is a video camera, a movie camera, and a seriously vintage (1940s) Argus 35mm camera. There is more, but I haven't yet had a chance to sort through it and take a proper inventory. Will I ever find a place for film again in my now-digital world? Do these cameras really mean something to me?

I hope nothing is broken. My father cared for things so meticulously it bordered on obsessive-compulsive behavior. He would have had a heart attack had he seen my mother's latest passive-aggressive act of spite. No bubble wrap, no newspaper, no styrofoam peanuts. This is how my mother operates. She is not a patient person, and if she resents doing something, she barely does it all. She knows the camera equipment she sent is worth at least $1,000--probably more--but since it's of no interest to her, she threw it in a box, barely taped it shut, and sent it without insurance or even so much as a "fragile" sticker on the side.

Now it is up to me to figure out what to do with these items. I already have 14 cameras of my own, none of which are compatible with the lenses my dad had. I noticed there is a half-used tape in the video camera. It might take me a while to take a look at that. The Argus is worth serious money, especially since it is in its original custom leather case and it has the user's manual, which is in perfect condition. There is an Argus Collector's Club that is alive and well around the world. Someone will want this camera.

Upon seeing the opened box, my husband's first question was, "What is this stuff worth? Will you sell everything or just some of it?" He sees this as a major Ebay opportunity, but he has a serious Ebay disorder, so he sees anything that hasn't been used for a few weeks as a possible revenue generator via auction or Buy It Now with free shipping. The fact that there might be sentiment involved for me hasn't registered yet, but he'll get there.

In the meantime, I keep coming back to the same troubling question: Given the amount of equipment spread out in the guestroom, where are all of the pictures? Surely my father took some pictures along the way. I hesitate to ask my mother.

Occluded joy

It is 12:20 a.m. I planned on just staying up tonight so I could watch the meteor shower. When I heard the distinct rumble of thunder and saw the dog skulk into the bathroom, I didn't want to look outside.

I did look outside, though, only to see a white sky opaque with cloud cover. Lightning flashed off to the north and more low thunder rolled through the night. Along with an ambulance and a firetruck.

We live less than a half-mile from the interstate, and just a couple of blocks off of a main road. We hear sirens all the time. Tonight, though, I heard the sirens and then they stopped at the edge of our neighborhood. About 30 seconds later, though, I saw the flash of red and blue lights blurring through the window shade. Ah, no noise in the residential areas after midnight. I did what anyone would do. I got up to take a look.

Both vehicles came to a stop about a half-block straight ahead of my front door (our house caps off a "T" intersection). Lots of people exited both vehicles and went into the nearest house. I turned off the lights at my house, grabbed the binoculars out of the closet, and stepped onto the porch. This is really the most fascinating thing going on at this time of night, and having been denied my meteor shower, I was willing to be a nosy neighbor just for the hell of it.

I realized that perhaps I wasn't being all that mature when it occurred to me that I had wedged myself into the darkest corner of the front porch. That was a challenge, since there's a street light right out front.

My binoculars are very good. I took the opportunity to adjust the binocular vision and reset the focus. Obviously, my husband had recently been nosy, too. I'll have to ask him about that. He'll probably tell me he was looking at the shingles on the roof.

Eventually, someone was put into the ambulance, but there didn't appear to be any urgency in anyone's demeanor. The ambulance stayed several minutes before leaving. The neighbor who lives across the street from where the ambulance was seems to somehow be involved with this, as he came out of the house with the EMTs and stayed and talked to them for quite some time. He had his cell phone out and was using that, as well. As the ambulance pulled away, the neighbor went into his own house. Hmmmm....

I really need to get a life.

Two evils, none the lesser

Pharmaceuticals are the conundrum of my life. Without them, I will surely die by my own hand. Intellectually I know this, yet it's hard to believe when the drugs do what they are supposed to do and hold my mood firmly within the acceptable range.

The thought of my own death does not trouble me. I worry about my husband, though, as I know he would struggle with being left alone. Still, even he is aware that taking medication is something I do mostly for the benefit of other people, so as not to irritate them with my moods or unfiltered thoughts. Given all options, I would not be medicated.

I am not addicted to hypomania. In this, I am very different from many, many people with my diagnosis. Hypomania is fabulous, I admit that, but I know how to live a productive life without it. Hypomania has been thoroughly medicated out of me, yet this is not what bothers me about medication.

The medications are very expensive. I pay about $300 per month for my medications, and that's with insurance. I can think of far more satisfying ways to spend that money, but that is not what I find most unpleasant about medication.

Side effects are the true burden of psychotropic medication. Five of the medications I take are sedating. When anyone tells me that I'm tired and lacking energy because I don't exercise, a huge knot of frustration and sadness fills my chest. I know I wouldn't drag so much if I weren't taking meds. At my very best, I am still in a fog.

Lithium. Lithium is not an easy road, at least, not for me. It does what it's supposed to do, but it also means that every day of my life I have brain fog, painfully dry mouth and eyes, hand tremor, and probably some degree of diarrhea along with significant nausea. Let's not forget the total inability to read anything longer than a few paragraphs due to compromises in concentration, and the speaking troubles, including a big problem with word-finding. The 50-pound weight gain is none too pleasant, either.

The lithium-related cognitive effects are profound. Major loss of IQ points. I used to be a quick thinker, a fast learner, and I had a very quick wit. I kissed all of that goodbye. When I make reference to this, it is not uncommon for people who know me to say, "Oh, you're OK. There's nothing wrong with your brain. It works just fine." This is actually insulting because it is so dismissive of something very real and important to me. The decline in my cognitive function causes me great distress and I mourn that loss every day. Just because I compensate in ways that make the deficits less noticeable does not mean my loss is trivial. I know what I have lost, and I bristle at the notion that since I seem OK, I should stop worrying about it.

Ambien CR. I hypno-shopped quite a bit. That wasn't the big problem, though. Ambien and lithium both make me chronically dizzy. Ambien is only marginally successful in helping me sleep, yet it manages to stay in my system for many hours after I wake up, meaning I am not alert most of the time.

EMSAM. Where do I begin? Selegiline is notoriously harsh on the body, just as harsh as lithium. The dose I take is high enough that there are dietary restrictions. This medication has significantly raised my heart rate and blood pressure, and it could eventually lead to a stroke. Unfortunately, neither tri-cyclic antidepressants nor SSRIs have any therapeutic benefit for me. This was a medication of last resort, and if it eventually fails, my entire treatment protocol will likely collapse.

Lamictal. Epilepsy drugs are difficult to describe. There's drowsiness, cognitive deficit, dizziness, lack of coordination (oy!), irritated nasal lining, hand tremor, gut pain, more diarrhea, more nausea, more headaches and my favorite, blurred vision.

For the first year I was taking EMSAM, I had to take Xanax, as well. The EMSAM triggered frightening waves of anxiety that were bad enough but that also made my stomach feel like I was on a roller coaster. Xanax XR mellowed me out and took the edge off the anxiety, but eventually, I started breaking in out in huge, hard, lumpy, itchy welts. These were the biggest hives I had ever seen, but they came only one or two at a time so I didn't realize what they were at first. this is considered a very serious side-effect of Xanax, so I stopped taking it, but did not become any less slow and sleepy.

I live every day of my life in a state of significant, nonstop discomfort. I would like to not be so thirsty. I would really like to get my balance and vision back. I would like to live without constant nausea. More than anything, though, I really want my intelligence to be restored. I want thinking to be something I just do, and not something I have to constantly work at.

Medications have made me flaky and stupid, and that is the worst side effect of all.

Beautiful, strong women

Last night, I didn't get home from work until 10:00. I had to do a home visit in a less-than-great part of town. I was supposed to meet with two Burmese women to go over some service documents. There was a volunteer there to meet me, ready to observe and receive some field training.

Two women. That became three, then five, then more. At one point, there were about 15 people and a pack of small children crammed into the tiny apartment, including one Oromo woman from Ethiopia. I couldn't hear myself speak over the noise and chaos.

When we finally spilled out of the apartment and into the summer night, I was reminded of the rich experiences these women have and are willing to share with me--even when it brings them to tears. Last night, everyone finished with a smile and in a boisterous mood.

Here is a picture of the women I met, along with the volunteer who will help with their case.



Mu Paw and her son. She is ethnic Karen and lived in Mae La for 15 years. Mumina and her two kids (and one on the way) are ethnic Oromo from Ethiopia. She lived in Dadaab camp, perhaps one the worst places on earth. Mary. Htoo Ma Paw is ethnic Karen and lived in Umpium camp for 16 years. It's her birthday today. Sa De Ha Baw is part of a group called "Black Karen." They are neither Black nor Karen. She is ethnic Indian, Muslim, and pregnant, due in November. She speaks Burmese, not Karen.

Exhausting visit, fabulous women. They energized me.

See, I'm not kidding

My husband walked past me while I was putting together the previous post. He stopped dead in his tracks and burst out laughing at the picture. Why? Because he thought it was so spot-on perfect, given the real-life version. Seriously.

Can we talk about my hair?

OK, here's the thing. I knew the haircut wasn't what I wanted, and I knew it was barely a change, but I didn't know to what degree. Every time I look in the mirror, I just get resentful and pissed off. Really pissed off. $40 gone, pissed away, poorly spent.

Why don't hair stylists listen to me? I think I speak clearly and articulately. I bring pictures, for god sake. What the fuck?

I got my hair cut on Tuesday. Since then, I have heard this countless times:

• "May, I thought you were going to get your hair cut."
• "May, why didn't you get your hair cut?"
• "May, did you decide not to cut your hair after all?"
• "May I like your new hair color. Are you waiting to cut it?"
• "What day is your hair appointment?"

What does this tell you? It should tell you that I am neither lying nor exaggerating about the hair cut situation. I am frustrated.

I'm not going back to get it fixed. Why would I want to sit under the scissors of a stylist who has just been told her work is unacceptable? I think that puts me in a vulnerable position.

On Wednesday, I emailed the David Cassidy picture to a coworker. When she actually saw me, she burst out laughing and said, "Oh...my...God..May. You look like the picture but more flippy. I am so sorry."

This incident has done absolutely nothing to restore my faith in hairstylists.

May is furious and embarrassed.

8888

It's a good night to rent a movie from 1995 called Beyond Rangoon, starring Patricia Arquette and Frances McDormand. The film recounts the events of the August 8, 1988 uprising in Rangoon, Burma that eventually led to the oppressive government abuses the country continues to experience today.

At this time, the UNHCR is in the process of resettling 100,000 Burmese refugees who have been living in camps on the Thai border for 20 years. It has become painfully evident that they will never be able to return to Burma, and so they are now on their way to the U.S., Canada, Australia, and Sweden, among other locations.

The 8888 Uprising saw the beginnings of the pro-democracy movement in Burma, a movement that resulted in death or imprisonment for thousands of upon thousands of people who stood up for their beliefs. It was from this event that Nobel Prize recipient Aung San Suu Kyi became an international icon representing people who struggle for human rights around the globe.

Take a moment and feel blessed that you have known democracy.

(To learn more about this film, including the ending, click here.)

Stand tall, Lopez

I live for moments like this. The story you are about to read (I hope) isn't only about a refugee or a moment of honor. It is also about a group of Olympic athletes who made a choice based on character and something more compelling: By choosing a teammate who came to the U.S. as a refugee from Sudan, a man who spends a good deal of his time raising awareness of Darfur issues and whose organziation co-founder was denied a Chinese visa based on his political views surrounding Darfur, these athletes made a statement about the integrity of governments, including our own.

The relationship between the U.S., Sudan, and China is complex and a bit nauseating. Many people don't want to know. The members of the 2008 U.S. Olympic Team want to make sure we all take notice. I wonder if George Bush will even give it a thought when Lopez Lomong strides past him at the opening cermonies tomorrow night.

(This story is a composite of several of those issued by wire services today, including CNN, Reuters, AP, and the Times of London. )

Eight years ago, Lopez Lomong didn't have a country. Now he will carry the flag for his adopted nation, leading the U.S. Olympic team into the opening ceremonies Friday.

On Wednesday, Lomong, one of the Lost Boys of Sudan, won the honor of leading America's athletes into the Bird's Nest Stadium in Beijing after a vote by U.S. Olympic team captains from each sport.

Lomong, a 1,500-meter runner, will be the flagbearer only 13 months after becoming a U.S. citizen.  

Lomong was born in Sudan, but was separated from his parents at gunpoint when he was 6 years old. With the help of friends, he escaped to a refugee camp in Kenya. He lived in the refugee camp for 10 years, and in 2000, he walked five miles to watch the Sydney Olympics on a black and white television. His dream of competing in the Olympics began there.

After watching American athlete Michael Johnson run, Lomong wrote an essay about what he would like to accomplish if given the chance to live in the United States. In 2001, he came to America as part of a program to resettle lost children from war-torn Sudan. He lived with a foster family in New York state. After high school, he went to college in Arizona.

"The American flag means everything in my life -- everything that describes me, coming from another country and going through all of the stages that I have to become a U.S. citizen," Lomong said. "This is another amazing step for me in celebrating being an American. I don't even have the words to describe how happy I am."

He earned his spot on the U.S. team at the Olympic trials on July 6, exactly one year to the day after he got his U.S. citizenship. Last year, he returned to his village and saw his own grave, dug by his family in the absolute certainty that their son was no longer alive.

"In America, everyone has a chance to do all these things," Lomong told the AP. "I'm feeling so blessed to get an opportunity to represent the United States of America, to present the United States flag in front of my team."

You can't always get what you want

Yesterday was the big day. I had planned for it and budgeted my money accordingly. And then it was time for my first haircut in a year. One entire year. It's more profound if you understand that I screw around with my hair constantly, and to do nothing for a year was an exercise in extreme patience and self-control for me.

I booked an appointment for a consultation. The stylist kept trying to steer me toward longish hair, saying she thought it was flattering and gave me more options. I assured her that long hair and warm weather are a terrible combination. I also told her that I don't need options because I don't do anything to my hair. I have two styles at this length: down and messy or pulled up in a butterfly clip with barrettes on the sides.

When my hair is long, I play with it incessantly to the point of annoying myself. When it's short, I use styling products so it doesn't go flat, and that's enough for me to stop putting my hands in my hair.

I am not a morning person. I never have been and don't expect this aspect of me to change, ever. I have more than four decades of experience to draw on here. This is why, when I went for my haircut, I was surprised that the stylist didn't believe me when I explained why I never style my hair before I go to work.

I brought pictures. I brought pictures of what I like and what I don't want on my head. I thought my pictures were clear, and I had captioned each one to indicate what I did or didn't like about it. I thought this made my preferences very obvious. Somehow, the stylist got it into her head that because I hadn't cut my hair in a year (to grow out a very, very bad haircut), that I had anxiety about cutting my hair and that I didn't want layers. I never said anything to this effect, but it's how the stylist interpreted my situation.

I showed her the pictures and said, "See this one? I know this would look OK and my hair would do this, but I do not want this style because it's just a cleaned-up version of what I have now and I definitely want a change from what I have now."

As she worked on my color, Sara the Stylist told me all of the reasons why she thought I should not cut my hair short. "You'll be able to do a lot more things with your hair," she said, "And it will only take five minutes in the morning." Five minutes? No hairstyle other than a ponytail takes five minutes. Believe me, I've tried many styles and I know.

After the color, Sara continued her pitch, telling me in an ominous tone that any shorter style would mean getting layers "all over again." I just blinked and said, "I have no problem with layers as long as they're done right and my hair doesn't stick out."

We went back and forth. She showed me up-do styles (Hahahahaha!), ways to wear combs and clips, and how much fun I could have with my hair. I showed her the pictures again. Across the top of the page, I had typed the following:
Bangs = must, but out of my eyes! Side part = preferred. Flat = bad, bad, bad. Volume = good. Quick and easy = best. Blow dry + iron + curlers + product = not realistic. Minimal prep time = important. Mornings = very hard.

I reminded Sara that these were not exaggerations; I really wasn't in the market for a hairstyle that required anything more than a towel, a comb and a claw clip. I really wanted a lot of hair removed from my head.

My wishes went unfulfilled. Sara insisted that we could always go shorter later, but I probably didn't want a super-drastic change if I was used to having long hair. "Sara," I said, "I'm actually used to having short hair. I only grew it out so I could start with a clean slate." Alas, this fell on deaf ears.

And so, I got a haircut, but you can't really tell. My husband wasn't even sure if I had gotten it cut, or if it was just styled differently. The color is more obvious, because I went from reddish-blondish/brown to dark, dark brown. Really dark.

When I got home and looked in the mirror, I realized that what I had on my head was a classic shag from the 1970s. I decided that I had the same hair as Carol Brady. This morning, though, I realized that I actually look like a cross between Carol Brady and Keith Partridge. This is definitely not what I had in mind.

I got up 15 minutes early today so I would have enough hair time. My resentment was already building as I knew I would have had a bigger benefit from the sleep than from the hair styling. After I showered, I towel-dried my hair. I got dressed, ate breakfast, and took my damp head to the powder room. I put in mousse, and lightly dried my hair the way I had been shown. Except it wasn't all the way dry because I have no patience for that.

I put in the three Velcro rollers per Sara's instructions. I did a little more blow drying, lost my attention span, and took out the rollers. Instead of getting height or volume, I got hair that was flat across the top and then sort of bubbled out on each edge of the top of my skull. Verrrrry attractive look.

Having achieved total disgust, I grabbed an elastic, made a ponytail, clamped on the claw clip, and headed out the door, looking like David Cassidy with an updo.