Tuesday, December 30, 2008

Beware the mood monster

May has been buried under a very bad mood she can't seem to think her way out of. She is depressed, irritable, extremely self-deprecating, filled with despair, and consumed with negativity.

My heart hurts.

I want to die. Maybe not.

Last night, before falling asleep, I took some time to read the latest issue of O, Oprah Magazine. It's full of self-help advice for those of us who have failed to maintain our bliss. Every article tells me I have the power--I just have to change how I think about circumstances around me. If I can put a positive spin on things, make lemons out of lemonade, my life will come together and I will feel happy. Holy crap, why didn't I think of this?

Those articles had no mention of overriding errant brain chemistry. Maybe that's the point. Chemistry is irrelevant; thinking is everything. My psychiatrist is going to be surprised by that news.

I spent some time on Amazon this morning looking for "better thinking" books. I'll probably get the audio versions since reading books is very difficult for me.

  • The Four Agreements: A Practical Guide to Personal Freedom, A Toltec Wisdom Book by Don Miguel Ruiz
  • The Voice of Knowledge: A Practical Guide to Inner Peace also Ruiz
  • Happier: Learn the Secrets to Daily Joy and Lasting Fulfillment by Tal Ben-Shahar (He teaches this class at Harvard)
Grumpy May. I am sandpaper. A cactus. A rash. Gravel. Teeth and claws.

Monday, December 29, 2008

Making a list, throwing it out

The New Year is just a couple of days off, and I thought I would sit down and make a list of things to accomplish in the New Year. Here is what I would like to do:
  1. Lose 70 pounds
  2. Be a better housekeeper
  3. Don't buy anything unless it's a critical situation
  4. Learn to be sweet.
  5. Exercise every goddam day
  6. Read a book.
  7. Cook more often than not.
  8. Wean off of medication, accept my reality, and learn to live with what I am, the way I was made.
  9. Boldly quit work without having a backup plan
  10. Free myself if I want to. Enough of feeling obligated to stay for the benefit of others. Note to self: Edit this one to give myself permission to give myself permission.
Since I know what I am and am not capable of, maybe I'll skip making a list, after all. Why set myself up for failure? Number eight looks very attractive, though. Might give that a try.

freak-ING unbelievable

One of the last times I saw Laurel in person, I told her that it didn't matter how long a bipolar sufferer had experienced symptoms, the one thing any of them could pinpoint was The Big One. That is, there is that critical incident when the symptoms overpowered any and all attempts to keep them suppressed. For awhile, I was unable to track my own timeline. I had to go backwards and associate linked events. I'm still not sure I have it all straight in my head. Nothing is all that straight in my head.

I've always been very organized and detail oriented, except for when I was in the midst of The Big One. Then I couldn't even remember if it was a workday or a weekend day. The anger and frustration of being so muddled made me determined to not let stupidity run my life.

Sometimes, I regress. I missed a loan payment and found out about it today. Immediately following The Big One, the cost of treatment sent us into very rocky financial territory. Part of that was because we had to change insurance companies three times in one year (not by choice--it was an employer snafu), and that meant shoveling huge sums of cash into the deductible monster.

In order to calm the financial storm, I borrowed against my 401K. I've been at this repayment for well over two years--going on three. I missed a payment once before, and that was in the midst of another Great West billing disaster. Paying bills is something I take very seriously and I do diligently. My many meds have wreaked havoc on my ability to keep details straight, so all of my money happens without me. My pay goes into the bank via direct deposit, and the next day, all of my bills are paid by way of electronic bill pay. It's a near-foolproof system. I only have to check my statements when they come in the mail so that I verify my account is set up to pull the right amount of money for each payment.

Except. The wrinkle in my brow, the fly in the ointment, the pain in my ass. It's name is ING. I cannot use automated bill pay to send $257 each month to ING. My little credit union can handle it no problem. The issue is on the other end. ING, according to their customer service people, "is not set up to take electronic payments." Say what?

Here's what ING has to say about itself: ING provides services to over 85 million private, corporate and institutional clients in more than 50 countries. With a diverse workforce of over 130,000 people... they still can't set up electronic money transfers. I ask every six months. I asked today. This must be a bajillion-trillion dollar company with computers and calculators and email and everything. Apparently not. A customer like me can't even make an online transfer via the ING Website. Nope. Checks only. The phone rep today said that my bank can send them a check, as long as it includes a payment coupon. Gee, I'm sure they'll be happy to take care of that for me every month.

Why does everything have to be so hard? These details, dates, times, appointments, bills, medications, adult life--they just swim in my head and I use carefully constructed scaffolds to keep me functioning like a normal person. BP killed off some brain cells, I think, and then the meds scrambled everything else. People who deal with me on a daily basis have no idea; that means my systems are working well enough that nobody knows I am secretly stupid.

ING is giving me a headache. I have the damn coupons. I write it in my calendar. Argh! The phone girl told me there's no harm done yet, but if I'm late again, they can dump the account and I'll have to pay all of the taxes and penalties on it as if it were a distribution. I told her that if it weren't for this neurological problem, I wouldn't need this loan at all. I said that as long as my brain tumor doesn't grow, I should be able to remember to make the payments. I said that the tumor makes it hard for me to remember things sometimes, and why, exactly, can't ING accept automated payments? She had no answer.

So, yeah, I lied and said I have a brain tumor. It sounds better than "BP medication has transformed me into a moron." Pesky tumor. Maybe it will eat my brain once and for all.

Saturday, December 27, 2008

It's called an address book

This morning finds me finally working on holiday cards. There's no mention of Christmas or New Year's on them so they can go out after Christmas but not appear to be late.

It took a long time to get the newsletter finished and the cards organized. Everything takes me a long time. This particular task requires a lot of horizontal space so I can lay out letters, cards, envelopes, address book, and laptop. So far, so good, until my husband decides to vacuum around me. This pisses me off. I want to say, "If you feel an overwhelming compulsion to do housework, Hazel, go wash dishes, clean the bathroom, or do your laundry. There are many hours in the day when you can run the vacuum cleaner away from my concentration-intensive task. I don't understand why you need to do the noisiest housework possible around my head or why it needs to be done right this minute."

This is something that drives me crazy about my husband. If I find a task of my own in the basement, he will come down and start working in the basement. If I go outside to work by myself, he's there within ten minutes, doing some non-essential task that gets in my way. Sometimes I just want to be alone with no noise, no interruption, and no company at all. Argh!

I hate addressing cards. I loathe this task, but since people keep moving, it takes just as long to update a database and print labels. Hand addressing it is. I need to keep track of who moved. I need to remember who gets a card and who couldn't care less. Who will notice, who won't.

I have an address book. It is low-tech, but it works in any setting, it requires no electricity, there is no software involved, and it's easy to update. I do this. I actually update my address book on a regular basis. It is a mystery to me when we get mail sent to our old address. We've lived here for four-and-a-half years. We're in the phone book. Why don't people at least find a logical place to tuck away change-of-address announcements? Why???

This brings me back to my husband. I've been asking for his address book so I can send cards to his siblings. He kept stalling. In frustration, I went online, but there's no way to know if a listing is current. "Husband, does your brother live on Maple Lane or Leafy Elm Court?"
"I'm not sure."
"You were just there six months ago."
"Well, look on Google Street View. That's what I do. I know what the house looks like."
"Are you saying that you've looked up your siblings' addresses repeatedly using the address and Google pictures, but you never bothered to actually record the address anywhere?"
"Well, I know what the house looks like, and it only takes a few minutes to look it up online when I need the information."
"Do you have your family's phone numbers written down anywhere or saved in your cell phone?"
"No. I just look it up online."

What this means. First of all, husband's brother and sister live in rural areas where Google Street View is never going to go. Can he really tell from the satellite picture of a roof in a forest that it's the right address?

Second...I must wait for husband to stop dicking around with unnecessary housework so he can be available to look up his sibling's addresses on the Internet. (He just went outside to play with the dog, BTW.) He will forget to do this until I nag and nag, and then he will profess that he's just not sure.

When we sent out wedding invitations, I had a stack of five for his family that went unmailed until about a week before the event. By then, it was really just a formality since all of the information had been given by telephone. In disgust, I put the invitations on husband's dresser and said, "Here you go. I know your family wants these, but at this point, you'll have to take care of getting them into the mail. I have other things I need to get done." I'm pretty sure that his invitations arrived while his family was boarding a plane at Newark. Of course, by doing it this way with holiday cards every year, I never get the addresses myself, so I can't put them in my address book. When husband's brother moved last year, he emailed the new information to my husband. My husband purges his read email weekly, never thinking he might have information there that he should archive.

Why do people do this? An address book is so simple to use. Even if you're too lazy to write new addresses in the book, take the little return address labels or the paper torn-off of the email and throw them in the book until the day, month, or year comes when there's time to record the information into the book. Or use tape and just tape it in the book.

Here is what will irritate me now: These still unaddressed cards will sit on the kitchen counter until April when I will finally just throw them away.

To review:
My method: Collect new addresses. Put into address book. Keep book updated.
Husband's method: Delete emails, throw out cards that come in the mail. When an address or phone number is needed, turn on computer. Get online. Use an online phone directory to look for everyone in the state who has the same name as the one needed. Narrow it down to most likely listings. Go onto Google Maps. Enter addresses and see if the Street View or satellite pictures look familiar. If not, send email to verify address. Wait days for a reply. When the reply comes, address the envelope, delete the email without printing it out or writing the address and phone so it can all be repeated next time.

Maybe my method is just ridiculously unreasonable.

Yawn? No?

It's 1:35 in the morning: Do you know where your bedroom is?
Apparently not.

Thursday, December 25, 2008

Merry ho ho

Merry Christmas!

Christmas seems subdued this year--not just at my house, but in general. Is no one's heart in it?

I finally got around to working on the stollen in earnest. It's a big recipe that makes two massive loaves. Pounds each. Once I got the dough going, I worked in the drunken fruit and dumped the whole thing out on the counter. As I kneaded a dough ball the size of my head, bits of citron, raisins, and currants flung themselves all about the kitchen, but mostly onto the floor. Our dog, Sparkle, was quick to react. She worked her way between my legs and the dishwasher and licked up everything that fell onto the floor, from flour to fruit bits.

Once the dough was set aside to rise, my husband said, "I seem to remember something from Animal Planet about dogs and raisins." I was skeptical. My husband checked on the Internet and came back with a report: Raisins are toxic.
"How many?"
"I don't know. They're just toxic."
"To all breeds? All sizes?"
"I guess. It's a newly recognized toxin."
"You're kidding."
"No. I'm calling the vet ER."

My husband spent about five minutes on hold--busy day in the ER. Eventually, he got a tech on the phone. All she did was verify that raisins are problematic--one serving being enough for trouble. I had to ask, "How much is one dog serving of raisins?"

He called the vet ER again. This time, after waiting on hold, he came back with a directive to induce vomiting in the dog. I had to ask, "How do you induce vomiting in a dog?" He looked at me and gave a big sigh as he reached for the phone.

A few minutes later, he came and found me and said, "A little bit of hydrogen peroxide squirted in her throat with a turkey baster." I had to ask, "How much peroxide is a little bit?" My husband did not reach for the phone. He said, "I don't know. Let's just put some in a cup and go for it."

We rounded up the dog and loaded the turkey baster. The dog obediently opened her mouth when asked, and my husband took his best shot. The dog took a step back and gagged. She spit out some peroxide, and I hoped it was at least hitting her teeth going in or coming out--they could use a little freshening.

We watched. A little more gagging, but nothing else. The dog grabbed her tennis ball and ran out into the yard to play. My husband called the dog back to the patio and we tried again. More gagging, no vomiting.

My husband dejectedly reached for the phone. He waited on hold again, and while he was doing that, I let the dog back into the house. While my husband chatted with the tech--who said we could bring Sparkle in and they wouldn't charge the ER surcharge--the dog sauntered into the kitchen. She looked up at my husband and puked with gusto all over the kitchen floor. And then she puked some more, and then some more after that. The vet tech cheered on the the other end of the phone.

We convinced the dog to drink some water, and then my husband cooked some plain white rice for Sparkle.

I finished the stollen, put on some makeup, and we headed out to visit friends. Upon our return, the dog met us at the door. The house was fine, the dog was happy, and all is well our world.

Except for the plethora of knick-knacks sent to us by my mother. As expected. For reasons I cannot fathom, she sent me two bath pillows (I don't take baths), an umbrella (very dry climate), and a pink-and-orange striped vinyl, rigid-sided wallet that's about the size of a $3 greeting card. I don't even carry a purse. My current wallet can be slipped into my jeans pocket with room left over for lip balm or keys. What was she thinking? Was she thinking? If not, is it still true that it's the thought that counts?

My husband, on the other hand, gave me something quite special. It's called the Metta Prayer Mobius Bracelet. It looks like this:

The Buddhist prayer is:

May all beings be peaceful.
May all beings be happy.
May all beings be safe.
May all beings awaken to the light of their true nature.
May all
beings be free.

This meditation encourages us to give metta to ourselves so we may be more able to bestow it upon others. I may need to wear this bracelet a lot.

Wednesday, December 24, 2008

Twas the night before

(I haven't proofread.Maybe later.)

This is the year we didn't decorate. I'm not sure where things went off track, but the plastic crates full of decorations that are down in the basement remain there. Late this afternoon, I pulled out our "pine" garland and some stems of silver leaves out and decorated the front porch. I put a big velvet bow on the door and a wreath on the front porch post and that was that. I couldn't find the extension cords, so the wreath is not lit up. Better than nothing.

My husband is usually the one who wants to make it look like Christmas. For the two consecutive Christmases when I couldn't function--and didn't really want to--it was my husband who pulled out the decorations. He would ask me where each thing was supposed to go, and he just kept asking until I gave an intelligent answer.

Part of the problem is that the house looks like a bomb hi it. It's hard for me to organize myself to straighten up and put things away. The clutter is ubiquitous. I want to clean it up, but I can't figure out how to sort, organize, prioritize, or otherwise get the job done. It's overwhelming, even when I break it into smaller jobs. I need one of those home shows to send a professional.

And so it is that my husband didn't want one more thing added to the clutter. It's still going to get done. I'm hosting a small party on January 3, and the house must be cleaned, decluttered, and spruced up in a holiday way.

How did it ever come to be that I don't have the mental capacity to organize the solid matter occupying my home? When did I lose interest in picking out the perfect gifts for my family? This year, I spent the money on household items and warm clothing for the refugees here. I started getting ready to bake a stollen, but got hopelessly distracted shortly after putting the fruit ti soak in the brandy. I'll try again in the morning, but by then the fruit will be exceptionally...drunk. It will make for a very cheerful stollen.

I would have sucked at being a parent. I can't even wrap my mind around the kind of stamina, planning, and thought that would go into putting together Christmas for kids. I'd never even make it through the shopping.

There was a time, I did this stuff. I shopped--carefully. I decorated. I baked. I cooked, I made my own wrapping paper, and generally overachieved in a Martha-esque manner in all areas of holiday merry-making. Throw some lithium into the eggnog, and look what happens. Santa can't find his way out of the North Pole.

For years, I had a Christmas Eve ritual that was just for myself. I lived in a town (and then another after that) with many old churches. When the church is full of people in winter clothing, there's usually a need to open the windows. Perfect. Around midnight, I would walk around town and listen. The music was sweet and warm. I heard bits of O, Holy Night, Silent Night, and the Hallelujah Chorus. It always gave me time to myself when I really needed it. I used the time to reflect, but mostly just to listen and enjoy the music and the enthusiasm of the people who had gathered to sing it. Now I live in a residential area where the churches are miles apart, not blocks apart. The cold goes right through me, and since the churches here have modern HVAC systems, I wouldn't hear anything anyway. I did watch The Voices of Christmas tonight on CBS. It wasn't even close to the real thing, but I like the music and singing, just the same.

It's getting late. I should go to bed. I already know what Santa's going to bring, so there's no anticipation keeping me awake. I'm just bored. Is this any way to spend Christmas Eve?

Saturday, December 20, 2008

Self, absorbed.

Amber was a therapist who specialized in working with survivors of war-related trauma and torture. During a workshop on secondary trauma--a job hazard for anyone who works with refugees--she talked about her own experiences that left her in need of specialized care.

Amber had run from a car when a rifle-toting military thug in Africa pushed his gun into her face. Although she had missed getting shot, the terror stayed with her for years. It was eventually compounded when she was involved in a near-fatal car accident that left her unable to function in everyday life. These two stories gave Amber's presentation a credibility it otherwise would have lacked for me, especially because I knew Amber to be a credible, genuine person.

Amber and her copresenter, Sissy, talked about somatic memory. I hadn't heard of it before. They showed pictures of brain scans illustrating electrical activity in the brains of people who had endured tremendous trauma and stress. They explained why the psychological component of torture is often more dangerous than the physical abuse. Then they talked about what happens when thoughts, memories, and feelings are buried. Maybe ignored. Possibly rerouted. Thoughts are taken out of the processing loop and pushed into a far corner of the brain where they no longer cause anxiety, sadness, and fear, otherwise lived over and over again.

I still have the handout somewhere. It includes a diagram of the brain, showing which sections control thoughts, memories, emotions, instincts and reflexes. Amber told us that each part of the brain needs to process information in its own way. There was no avoiding it, although delay and reinterpretation were possible.

The presentation fascinated me because it was the first academic explanation I had heard outlining why stressed out people get sick so often. While the brain is busy putting constant--but not conscious--effort into suppressing bad thoughts, it is no longer spending as much effort keeping the body's systems in top working order. It was the first time I heard the term somatoform illness. It was the first time I had an in-depth lesson on PTSD.

Survivors of torture and deep trauma who never effectively process their experience often exhibit somatoform symptoms in addition to the more straightforward evidence of PTSD. Given enough time, the brain will actually rewire itself so the somatoform illness becomes ingrained. The only way to stop the physical symptoms is by reconciling the emotional.

Amber stated that those deeply emotional experiences, when not neutralized, literally take up residence in the tissues of the body. We carry our troubles like a heavy suit that wears us down with each day it is not removed. It can become too physically painful to overcome.

Chronic pain can be both a cause and a form of somatoform illness. Not wanting to miss anything, my doctor is addressing my rapidly worsening problem with medication, physical therapy, nerve manipulation, meditation/visualization, EMDR, and lifestyle. No matter what the source of the pain turns out to be, the goal is to not let it get so far along that my brain starts to register it as a normal condition.

My pain is real. I just hope it isn't rooted in memory--some new and unprovable humiliation spun out of an already deeply defective brain. I can't think of any hidden trauma--physical or emotional that I've forgotten about. I believe that with all of the therapy I've been through, there can't be anything left to tease out of the folds of my brain tissue.

I told my husband that I want to feel better because I cannot survive this level of unrelenting, excruciating pain if there is to be no end in sight. Aside from the pain itself, I'm not sure I can survive the humiliation if this knife in my gut turns out to be nothing but uncollected thoughts seeping into the viscera.

I am not a hypochondriac. How do I prove it given this maddening absence of physical evidence?

I wasn't making it up

Back in July, I wrote a brief post about how, when driving to work one day, I saw the Google camera car. This is the vehicle that takes all of the pictures for the Street View function on Google maps. By the way, as of last week, all of the images for that have been greatly improved with higher resolution. Your house looks really clear now.

When I told the story at work, people were skeptical. Until yesterday. I decided to see if the reglar street view images had been updated lately, and they had. I looked up that intersection from last July, and there it was. Me, I mean. There I was. Here I am:

(If you click on the photo, you can see the blurry shape of my head and my hand on the wheel. Maybe the blur to my left is me waving.)

Thursday, December 18, 2008

No longer a Hallmark holiday

I heard this story on NPR this week and it struck a nerve (although which nerve I cannot say, seeings as how they're all confused). I don't need to see the Holy Family on my Christmas cards, but I do miss all of the pretty cards depicting holiday scenes that used to come to my house. They've been replaced with photo-cards, and nobody even signs those.

I'm never sure what to do with these cards. They don't stand up on the bookcase and they don't lean against aything without falling. And after Christmas...Can I just throw them out? I hope so.

In response to this, I've been sending out pictures of my pets now for at least three Christmases. Oddly enough, nobody seems to understand that it's a joke. Which reminds me--I have a holiday letter to write.

While I'm working on that, here is the NPR story. I love it! Jesuits rock.

Printed entirely without any permission whatsoever...

All Things Considered, December 17, 2008 · It's the middle of the day, and I'm opening my Christmas cards. And what do I see when I tear open the envelope? Not Baby Jesus in his manger. Not the Virgin Mary. Not even the Wise Men. No, chances are the card will be a photo of a family on some beach in the Caribbean. Or a picture of somebody's house. Or someone's dog wearing reindeer horns.

These are the new favorite Christmas cards, for even the most pious Christians: the family cards.

Family cards display — on the front — a photo of a happy family, typically wearing red-and-green scarves or red-and-green sweaters. Sometimes the family dog is included, wearing a scarf covered with slobber. Just as often, family cards show the clan on their summer vacation, posing jauntily in bathing suits in the Caribbean. These cards don't say "Merry Christmas" as much as "Look where you didn't go!"

Look, I love family photos during the holidays. Plus, I actually read those annual holiday letters, all of which start with "What a busy year it's been!" Seeing photos of my friends and their families and even enjoying a few sunny beach scenes when it's cold and dark outside is a highlight of December.

But I enjoy the photos more when they're inside the card, not the card itself. Because more and more, even devout Christians have been replacing Jesus, Mary and Joseph with themselves. Doesn't it strike you as weird to set aside the Holy Family in favor of your family? Does a photo of Cabo San Lucas trump the story told by the original San Lucas? Is Christmas really about you?

Still unconvinced? Try a thought experiment. For your next birthday, how would you feel about getting a birthday card with my photo on it? "Happy Birthday! It's a photo of me!" My modest campaign against family cards has less chance of success than another Ralph Nader presidential bid. People will accuse me of being anti-family. But I'm not: I'm more pro-Holy Family. Plus, I'm battling Snapfish, Shutterfly, Kodak and a lot of online card stores that have been promoting this idea with more resources than a poor Jesuit can muster.

So I'll leave you with a simple plea. Place those great photos inside the card. Or how about this: When choosing your Christmas cards this year, think more Jesus and less you. Or, more Virgin Mary, and less Virgin Islands.

The Rev. James Martin is a Jesuit priest and author of My Life with the Saints.

Nervous. System.

It's been three months since I saw the urologist last. Actually, I see her assistant, a feisty nurse practitioner named Mary. When Mary came into the exam room, she knew immediately something had changed. "What's going on? This isn't the happy face I usually see."

I explained that while I had been making progress with the interstitial cystitis for many months, it all got unraveled in the last six weeks. I explained in detail my issues with stabbing abdominal pain, back pain, nausea, and a litany of other symptoms. I offered that it was probably unrelated and I should just make an appointment with an internist and get a physical while I was at it.

Ha. That it should be so easy.

Mary listened to me and asked questions for 15 minutes. Then she stood up and said, "You need a CT scan. Soon. I have some other thoughts. I'm going to go talk to the doctor and we'll see what she thinks."

It gave me pause. Mary has never called in the doc for as long as I've been going there.

Twenty minutes passed and the doctor came in the room. She was much warmer and friendlier this time. We talked a long time about my physical symptoms, my emotional load, the issues that come with working with survivors of trauma and torture on a daily basis, my shingles and lingering PHN, and my other health concerns, including BP and IBS.

The doc sat back and said, "May, you are on the verge. You are in a precarious situation and you don't even realize it. There is help for you, but I can't do it all and you can't do it alone. You think you can do everything alone, but this time, you're going to have to take a team approach. You have to be on the team. By the way, could you have a more stressful job?"

I asked who else was on the team. Those people include a pain specialist whose work concentrates on conditions related to the nervous system. There's a physiatrist, a psychologist, a therapist who does EMDR, and a physical therapist. I have two books to read, a website to look at, and a CT scan scheduled for next week.

I looked at the list in front of me and asked, "Isn't it possible this is just a flare-up that will go away when whatever irritated me goes away? I mean, yes, this hurts a lot, but it was getting better a few months ago."

Doc looked at me with a sad smile and said, "May, your body is on the verge of a nervous system short-circuit. All you've been through this past year was the start of it, and if you don't take this seriously now, the results could be disastrous. Your nervous system is on overdrive. It is sending out massive waves of signals that are so misinterpreted, they will cause permanent nerve damage if not corrected. The problem is escalating and you need to accept that it's time for a multi-disciplinary approach. There is no waiting."

This really isn't how I hoped to start 2009. I thought bizarre medical conditions would be put to rest in time for the start of the New Year.

So, once again I end the year wanting a whole new brain, but I'd also like to add all new wiring, as well. And a better metabolism.

Tuesday, December 16, 2008

One more week 'til we feel the Love

I'm not much for holiday traditions, but there is one thing that puts the cherry on my fruitcake. On the Tuesday before Christmas, Darlene Love belts out her version of Christmas cheer on Letterman. I was feeling pretty low last December as it was, and then with the writer's strike, my mood sank even lower into the snowdrifts--Ms. Love was silent for the first time in over 20 years. It was just plain wrong.

Count down the days with me, won't you? To help you get in the spirit, here's Darlene Love bringin' it for the 2006 Letterman performance.

(My husband suggested I explain why I feel so strongly about Darlene Love's Letterman appearance. OK. Back in the mid 1980s, I thought I was going to be married fairly soon. That was the plan, anyway. In October of said year, I found myself quite unexpectedly alone. A few weeks later, I lost my job. A couple of weeks after that, both of my roommates moved out, leaving me more alone and empty than I had ever been in my life. As Christmas approached, I felt as if everything inside had been hollowed out as if I were a chocolate Santa. One night, I was sitting at home and I heard Elvis singing Blue Christmas on the radio. I called my ex and left a rambling phone message. He responded by letting me know that although it had been less than 90 days since our breakup, he was freshly engaged. I got drunk and turned on the TV later that night. Letterman was wrapping up, and there was Darlene Love. I'm sure I had seen her do the Christmas show before, but it han't meant anything. I listened to the song and Darlene was singing everything I felt about my ex at that moment .

I thought that breakup would kill me. So did my family. It didn't. Now I watch Darlene sing
Christmas: Baby, Please Come Home every year as a reminder that I have been through some pretty crappy holidays and survived--despite my own doubts.

Monday, December 15, 2008

I thought I left this back East

I thought this was bad...

Until I woke up this morning to see that it was NEGATIVE 15 degrees. That's just not right. I froze my toes and my nose.

Sunday, December 14, 2008


Who came up with this holiday nonsense? It makes people mean. Not me--other people. Driving and shopping are getting to be acts of courage.

I am willing to do some holiday decorating--something I ceased to do entirely after 2004. We don't get a tree because the house is too small and the cats and dog find that sort of thing far too intriguing. If we had decided to put up a tree, I had a great idea for unbreakable decorations. I have a big pile of empty pillbottles from all of my prescriptions. I was going to attach ribbons to them and to the lids, and then hang them on the tree, along with a garland paper chain made from all of last year's insurance statements that turned out to be wrong (not in my favor). It would be my most personal tree ever.

I told my family that my husband and I had no interest in exchanging gifts with anyone (meaning them). Everyone was OK with it except for my mother, who will surely shower us with the usual array of cheap and useless Chinese-produced crap. Feeling obligated given her response to our original announcement, we're buying her Omaha steaks and chardonnay. If I could, I would hire a wait staff to cook it and serve it to her. Of course, then she would complain that I should be there to do that for her.

I have no idea what my husband wants. He won't say. It's not that he wants me to guess; I think he feels guilty for asking anyone to spend money on him.

People become so weird and complicated this time of year.

I had some money to spend, so I bought some things for me. I found a fabulous, $6 pair of pink gloves with black fur trim that match the Barbie coat exactly. I found some really lovely things at some of the alternative gift markets I happened upon this season. Mostly, though, I bought things to donate to the refugees I know. I bought things like fluffy towels, nice dishtowels, candles, matched sets of glasses, fancy shower gel with those nylon pouf thingies, gloves, hats, scarves, notebooks, office/school supplies, and all kinds of things pretty, practical, and personal. These gifts may not be extravagant or all that imaginative, but I know they will bring a moment of happiness to the people who receive them. And isn't that the point?

Saturday, December 13, 2008

Sad validation

(EDIT: I wrote this last night and accidentally hit "Publish" before I finished writing. Decided to get some sleep and finish this morning.)

What is the best way to gauge how people see us and whether or not our existence has value? How do you know? Is the value we assign to ourselves enough evidence that the daily effort of being is worthwhile?

I make no secret of the fact that I live in a paradoxical state of conflict: I no longer trust myself to make the right decisions about being involved with people beyond the most superficial relationships. I am lonely. I don't want to let anyone near. But I'm still lonely.

For this reason, I depend on professional relationships to keep me connected to the bigger world outside of my head. It's how I remember how to talk to people and to understand what is relevant in the world. If it weren't for this, I would get lost in my own head.

I have to work at it. I have to make sure I don't devolve into being completely socially retarded. Still, I am pleasant and funny and conscientious and aware. That does not mean I am liked. I am sure, in fact, that there are very few people who like me to the point of wanting anything more than those surface encounters.

I've never been popular. I don't have the looks for it, for sure, but I just don't have the personality for it, either. I think too much and say too many dorky things. I have, over the course of my life, proven to be highly...forgettable. I'm not the kind of person that people care about. My value to the world is in what I contribute, what I do for other people, what service or knowledge I can provide. Beyond that, though, I'm mostly under the radar. Unless someone wants something from me, it is quite evident that my presence or lack thereof would go unnoticed.

I try not to dwell. I tell myself I have what I need and it's a neat package inside of my head. There is my friend, Jolie, who may be a thousand miles away, but she's just a phone call away. That's it, though--she's a thousand miles away. Our phone calls are usually quite short and I come away wondering if I'm bothering her.

Joanna. We used to be close, but now she pops her head in only every three or four months or so, no matter how many messages I generate.

For someone who used to talk so much, I never thought I would see the day when the only conversation partner I would have would be binary code rolling off into Cyberspace. I'm not sure if that's a commentary on me and my place in the world, or just a cultural shift in general.

If I stop working, would I cease to exist, or, left with no one to chat with, would I finally shut the fuck up? Hmm.

What prompted today's musing? The realization that when I tried an experiment--to not call anyone, indefinitely, the only phone calls I received in six weeks were related to the nonprofit or to other business. No personal calls. People I call don't call me back. I can live with this invisibility, but it doesn't feel good. My husband tries to console me again and again with the same sentence: "People are busy and involved with their own lives, May; they have important things going on." So, I am not valued.

Not feeling sorry for myself. Just realizing that my worth in the world outside of my home is strictly utilitarian. Chairman Mao said that being useful was the most honorable aspect of life. Still processing that.

Safety cloak

(Edit: I felt compelled to write this post as I was rearranging a closet. I had my hand on my gorgeous, size 10, plum-colored, cashmere-blend coat that likely will never fit me again in this lifetime. Still, I can't bear to give it away. I love that coat and it makes me resent the replacement.)

Last year, I needed to buy a coat. It wasn't a pleasant task since the reason for my quest was my ever-expanding ass. Coats that fit in the chest and shoulders had no interest in meeting around my hips.

I went to Ross. It's my favorite store and where I do 90% of my shopping. They had lots of really ugly coats that fit. I wasn't going to pay $80-$90 for something hideous. Instead, I found something outrageous for only $30. I call it The Plus-Size Barbie special. The weird thing is, as much as I detest this coat, I get a lot of compliments on it.

The coat is bright pink, like Dubble-Bubble. It has big, black buttons, cuffed sleeves, a modified empire waist, and a bit of a swing cut (hence the ability to fit around my hips and actually button closed). It's a Liz Claiborne, but I'm sure that Liz didn't design it with my body shape in mind. I hate this coat. I suppose that if I had bought it under different circumstances, it might not irritate me so much, but for now it's a very pink reminder of my failure to actually look like Barbie. I'll bet that this coat is adorable on a size 6 woman.

The upside of this coat is that it offers a degree of protection in an urban environment. Every day, I have to cross one of the busiest streets in the city. Drivers routinely ignore the "No Right On Red" signs, and the "Yield to Pedestrians in Crosswalk" sign is, apparently, invisible. I figure that when I get run over, the driver responsible for my demise will be laughed at as he is led away by the police when he says, "I just didn't see the XXL pink overcoat in the crosswalk." Please.

Mousse me, baby

Good hair. I have a good haircut. Finally. I have never received so many compliments on a haircut.

My faith in cosmetology has been restored.

Friday, December 12, 2008

Just one thing at a time

On Monday I woke up five minutes before the alarm, seven minutes before the SAD wake-up light. I was full-on awake, too, not the usual foggy, groggy, reluctant half-awake that starts most mornings.

My stomach lurched and a sense of dread took over, covering me just as effectively as the fuzzy blanket touching my cheek. I couldn't quite catch my breath and my stomach clenched. Anxiety. I was being squeezed in the tight grip of anxiety. Not a great way to start a Monday morning.

I fought back tears and tried to identify the source of my misery. The wake-up light switched on and the cat, who had been gently licking my hand, walked on my head, abandoning me for the wave of photons pouring out of the light. She's in love with that thing. The light only made me more irritable because now that I could see, I couldn't concentrate on finding the reason anxiety had slapped me awake at 5:55 A.M.

Breathing was a challenge, but I realized it had nothing to do with anxiety. Lately I've felt like my lungs have been pricked full of pinholes, so air goes in but doesn't build up any satisfying, chest-expanding pressure, nor does it seem to stay in my lungs. My most recent inhale generated a loud creaking noise that sounded more like a tired sofa than like a gentle breath.

I made it through the morning routine, but I was slow--so damn slow my husband had to get my breakfast ready. On the way to work, the anxiety almost choked me and I started to cry. There's a huge, perpetual construction project along the creek that I knew I couldn't cry through--it required my complete attention.

Throughout the week, the anxiety showed up several more times, but it was overshadowed by something much more acute. For the past month, a pain has been growing in my lower abdomen. I have IBS and the devil's constellation of symptoms related to interstitial cystitis. One more abdominal pain doesn't usually get my attention, but this one has steadily worsened to the point of being debilitating. I'm not bleeding from any part of my anatomy, so it's not cancer. I can't even identify its origination point. I have something akin to cramps, but much worse. It feels like I am being scraped and poked from the inside out by a thousand jagged pins. Using the toilet has become agony as any function there results in not relief, but almost immediate gut-tearing pain that takes my pinhole-fragile breath away. When I walk, it feel like my bladder is bouncing hard on a rickety suspension system. I can't pull in my gut--the pressure is too uncomfortable and I am chronically bloated. This pain is bad. Really bad.

Fatigue. I went from being a person who couldn't sleep to one who can't stay awake. I'm exhausted half-way through my work day. When I come home, I fall asleep on the couch by 7:30 and don't wake up until 10:00. This is no winter malaise, despite the cold. Sometimes I get so cold, my feet hurt from the sensation. My body is wracked with chills that come in great spasms. The only relief is to wear pajamas, socks, and a fleece, and then get into bed under lots of covers with an oversized heating pad to warm my core.

I don't know if this is urinary, intestinal, or gynecological. This is exactly where I started two years ago and a succession of blood tests, ultrasounds, and digital exams revealed nothing. I have no interest in going through that again.

My body's pain mechanisms haven't worked right since I had shingles. It's bad enough I have chronic breast pain (harmless--it's referred pain from the shingles nerve damage).

I'm worried about the nonprofit. I'm concerned about my lackluster job performance lately. I'm obsessed with the thoughts surrounding my health. For whatever reason, I am petrified my BP drugs are going to fail. What will I do if and when that happens?

Anxiety. It's never just one thing. It's not the fear the drugs will fail; it's a gut-wrenching fear that my BP will overpower them and I will break apart into a shattered mess of irrational, rude, hyper-kinetic, labile mood, socially inappropriate unpleasantness. Why can't hypomania be unipolar the way depression is?

Coping would be much easier if these things would visit one at a time.

I am not afraid to die, but the thought of chronic suffering has me sliding into that dark place where anxiety finds a fertile environment that throws me even more off-kilter.

If I could just sleep a little bit more, maybe someone could wake me when it's over.

Thursday, December 11, 2008

Semantics, implications and inference

First comes the agonizing confusion, gut-wrenching erratic feelings, and anxiety. Next comes the diagnosis and medical treatment, supplemented by self-education and the eventual realization that not all illnesses are perceived equally. Some are serious but not taken seriously. Some are grave and if the patient decides to go for treatment, he or she is considered to be "brave." And then there is an entire class of illness that, because the word "mental" is tacked on before the word "illness," well, the patient is in for a fight, but will never be considered courageous.

Somewhere near the beginning of this blog, someone wrote that instead of calling it by any euphemism, this class of malady should be called, simply, illness. I agree. Why do we differentiate? My illness is biological, it is unpredictable, I did nothing to bring it on, and there is nothing, absolutely nothing, I can do to cure it. A cure is exactly what I want, though.

If you have diabetes or if you survive cancer, you can still run for political office, open a daycare center, and buy a gun. If you go on Oprah, it will be as a role model, not as a worst-case scenario.
I once posed a question on a bipolar forum, "If it's neurological in nature, why is it considered a mental illness?" Nobody was able to give me a satisfactory answer. One person said, "It's because this illness affects the mind and behavior." Well, so do other illnesses. The thing is, the term "mental illness" tells very little about the illnesses themselves. The implications, however, are unmistakable.

We live in a culture of insidious implications. To say someone is ill is meant to imply that it is a physical problem, and probably one that couldn't have been avoided. It is forgiveable. When you say mental illness, though, only those who have intimate knowledge of what those illnesses bring with them can really understand why any and all illness is illness. Everyone else infers the following:
  • It's not real.
  • It has no tangible etiology.
  • It's willful.
  • You could change it if you wanted to.
  • You brought it on yourself.
  • You're weak.
  • You're trying to get attention/avoid responsibility/be hurtful/get out of something.
  • It's because you lack maturity.

The term mental illness robs us of credibility just as it is used to explain away inexplicable actions. It is a catch-all, get-out-of-jail-free card for criminals, celebrities, and politicians.

It tells nothing, but implies far too much.

Friday, December 5, 2008

I gained five pounds in two weeks for no apparent reason, and it's definitely not water weight. I am too traumatized to write.

Saturday, November 29, 2008

Turkey. What was I thinking?

What happens when a devout vegetarian decides to have "just a bit" of turkey for Thanksiving, along with gravy and stuffing?

Um, you don't want to know. Pepto Bismol is not the answer.

Wednesday, November 26, 2008

Pass the Kleenex

The Brainucopia runneth over. It is congested--not with thoughts, but with snot. My husband was sick last week--still is--and now it's my turn. Last winter, I made it through to spring without a cold but finished the season with shingles. This season, I'm starting off with viral toxicity. I'm still not sure which is worse.

It is a long-standing tradition in my life to fall ill the week of Thanksgiving. In fact, of the four times I've had pneumonia, two were during the week of Thanksgiving. It seems to be hard-wired into my brain. I don't think about it; it just happens. And it sucks. And blows. And coughs.

My body produces mucous exceptionally well and with admirable efficiency. Throughout my life, solutions have appeared only to be taken away. Phenylpropanalomine (PPA) was an absolute lifesaver during some of my worst colds and bouts of bronchitis. Nothing else before or since worked as well. Unfortunately, this medication had an unexpected side effect. It was an excellent appetite suppressant. And here is where Americans slide into that murky swamp of no accountability. When the medication went over the counter, it wasn't long before people who refused to diet found out that the drug was quite helpful for those who wanted to lose weight effortlessly.

The thing is, though, that long-term, heavy use of PPA was already known to cause heart attacks and high blood pressure. It was clearly printed on the label. The medication was never meant to be a weight loss aid, it was never prescribed as such, and the manufacturers never mentioned it might be good for that. Unfotunately, the Dexatrim people sold it off-label anyway. People don't think real life applies to them. Chronic dieters developed serious health problems, not the least of which was heart failure. Rather than admit they were idiots to inappropriately ingest a powerful medication in high doses for years, they got together and did what Americans do: They filed personal injury lawsuits against the drug manufacturers citing reckless endangerment and "They should have told us not to do this."

In response to this, PPA was pulled from store shelves and completely taken off the market in 2000. I'll bet the lazy ass diet cheaters never got any thinner, but I started drowning in my own mucous every time I got a cold. And then, of course, I got pneumonia because there was no effective alternative to stop a run-of-the-mill head cold from turning into a major medical condition.

Sudafed never worked very well for me, but it was a serviceable, cheap substitute for PPA. At least, when I needed it, I could get oxygen into my body. Bonus for not dozing off while cooking or using power tools.

Of course, things became less convenient when the crystal meth addicts became drooling, face-picking, toothless shoplifters, clearing store shelves of huge quantities of Sudafed. turns out that the only other decongestant that ever worked is the key ingredient in meth. Can someone please stage a national intervention for these people? Sudafed wasn't eliminated from the American pharmacopoeia, but it started to feel somewhat unsavory when I had to start asking for it at the counter. Suddenly, stopping my runny nose took on the feel of buying a nickel bag.

All was better, if not great, for a few years. When it became evident that SSRI medications were not for me, my doctor prescribed an MAOI. The medication works great, although I do have to take a fairly large dose for the benefits to be apparent. Read the back of any cold medication and you'll see the warning: Do not take this medication if you are currently taking an MAOI.

I have a cold or something worse. I cannot take a decongestant. There are none left for me to take. I am now dependent on water to save me. I use a neti pot to flush out my sinuses. I drink hot tea. I have multiple vaporizers going at any time. I own five vaporizers and a humidifier. Is that excessive?

Let there be no doubt. Although some of those therapies are soothing, they don't do much to halt mucous production. I am congested. I am choking, and my eyes are watering.

I want to kick the collective asses of the lazy dieters and the hallucinating, thieving meth addicts every time I catch a cold. If only I could just wipe them down with a slimy, wet Kleenex.

Seems fair to me.

Sunday, November 23, 2008

I am what I am

My professional life is all about people. I am not only involved in the lives of refugees and the community in which they live, I am entrenched. My life focuses on helping and arranging for help. I have a sympathetic ear and a sincere desire to help people hurt less.

My husband hates this. He hates it when I invite people to our house. He hates it that I have a lot of things in the house that are related to my job. He dislikes that I am required to work a fair amount of nights and weekends. He gets irritated that I often have to work on work at home. He does not answer the phone. He has no friends.

My husband said I am neglecting him and my home life. He said that my work is my life. I asked him this: "What do you want me to do? What do you want that is lacking? If I dropped it all tomorrow, got a clerical job with very structured hours, and had no obligations after 5:00 or on weekends, what would you see me doing here at home or with you that is not happening now? I don't have very many people in my life, at least, not on a personal level, but let's say I never invite another person over, I never take another phone call, and I am always 100% available to you, please tell me what you see me doing with that time here at home."

He had no answer. Eventually he said, "I just think you neglect us and you should pay as much attention to us as you do to your work and to the nonprofit." But still no mention of what "it" is I don't do that I should do.

My husband is very much like our border collie. He must have something to do almost every minute of his waking time. He is obsessed with home improvement. When I have down time and I am ready to be still and quiet, there is always a project going on in close proximity. I am frequently told we can't go here or there or do this activity or that one(Let's go away for the weekend. Let's visit so-and-so, Let's see a movie/exhibit/concert/whatever will get us out of the house...), I am shot down every time. "I have to finish the window. I want to paint the door. I'm going to fix the gate." Our house is not really a fixer. It's solid and in good condition. At this point, anything that needs to be done is strictly a choice or cosmetic. Why would I hang around for that?

I know there's a compromise in there, but I'll be damned if I know how to find it. I am not interested in doing home improvement work. I can no longer ride a bike, ski, rollerblade, hike, or even walk for exercise--not with my husband, anyway--he practically sprints. We don't go shopping since we have no money. It all belongs to the house. We watch TV together. I don't know what's left for us to do other than that. I guess I could hand him the tools or hold the light when he's improving the house. Yeah...because that's an outstanding use of my time.

He knew I was a workaholic when he met me. Why is it suddenly an issue?

Friday, November 21, 2008

She doesn't get it

Sonja came in my office visibly upset. When I asked what was wrong, she told me that Bill, a man she knew professionally had committed suicide in a lake in New Mexico. I knew they weren't close, so I was surprised at her reaction.

She told me she was angry and sad and she couldn't understand how he could do that to his kids. Why didn't he reach out? Why didn't he try to get help? didn't he realize how angry and upset people would be?

I listened to her and calmly said, "Sonja, there was nothing anyone could have done. You don't know that he didn't reach out. And if he did, he didn't find what he needed among the people he knew."

Her eyes teared up and she said, "But his two little kids. What will their lives be like? What are they going to think knowing their father committed suicide?"

I chose my words carefully. "Sonja, Bill had arrived at the conclusion that his kids' lives would not be better by having him here. The truth is, he was in so much pain that not even his love for his children could make it bearable."

I thought, Why don't you understand that this isn't about making other people feel happy or comfortable? After all I've tried to teach you, why don't you accept this simple fact: People kill themselves because they want the pain to stop.

She tried one more "Why didn't he/how could he..." and I had a calm, measured response to that, too. She was getting angry. She should have known she chose the wrong person to have this conversation with if what she wanted was someone to validate her sense of guilt and helplessness regarding Bill's unwillingness to endure his situation. First, I don't have much tolerance for people who stigmatize death. I believe everyone would be just as sad had Bill died of a heart attack. A heart attack doesn't make people examine their own role in the relationship, though, and it is that reflection that is at the root of the discomfort Sonja is feeling.

Why didn't he reach out? When Bill started to unravel, Sonja distanced herself and told him to get help. He rebounded briefly, but after admitting that he wasn't doing as well as he appeared, Sonja distanced herself again. She talked about his demise and said he was messed up and pathetic. Several months ago, Bill left Sonja a voicemail saying he was selling everything and taking off--he had no idea where.

When she retrieved the message, she got angry and very agitated, saying, "Who does this? What is that supposed to mean? That's not fair. You can't just leave someone a message like that!" Not that she picked up the phone and tried to call him back to see if he was, in fact, reaching out. From my perspective, it seemed that Sonja had soundly rejected Bill's attempts at asking for help. How could she possibly feel any anger about his suicide?

She looked at me and said, "Look, it's just that, that someone I cared about* died and I feel sad and, and..."

I said, "Yes, I know you do. I'm sorry about that. I'm sorry you feel bad."

She left abruptly.

Later, I sent her this message:

I am sorry that you hurt right now. I do understand that you feel a loss in your world and that it’s sad and emotional. It must be hard to know that someone you cared about rejected everything and everyone in his world in one swift stroke.

Personally, I can’t say that another’s suicide is terrible or was a mistake. It doesn’t mean I don’t have feelings about it when it happens, although I am aware I may sound clinical and detached. It’s just that I cannot question and cannot judge the depths of someone else’s pain. As humans, we do not have the capacity for that kind of emotional insight. I do understand, though, how it feels to be judged, dismissed, and second-guessed—Trust me, having the people you know invalidate your reality only adds to an already excruciating discomfort. Perhaps this is among the reasons Bill didn’t go to the people who cared about him most—he knew there was no chance for objective assistance in his emotional state.

People in crisis know they can act on their desire to stop the unbearable emotional pain, but they also know it is dangerous to talk about it. It may be the only punishable “thought crime” in our society. Some of us know that it is too easy to be misunderstood by those who don’t grasp the complexity of the inner conversation that takes place while working toward a solution—whether that solution is life or death. It is very possible that the reason Bill didn’t reach out was that he didn’t want anyone else to judge him or to take away his right to control his own decisions, his own life. Ultimately, it was his decision and it was a decision that spoke clearly of his despair and inability to see any other way to stop his pain—he concluded that no one he knew had whatever it was he needed.

I know that what I am saying is of little or no comfort—I apologize for that. I am sorry you lost someone you cared about. Since I no longer possess a comforting demeanor anymore, let me at least offer some information.

May I suggest some very good reading? It was understanding that brought me some peace in my own troubled soul. These are not bereavement books; they are psycho-social analyses that all attempt to answer the question, “But why?” They do a good job of it, too.

Night Falls Fast
Kay Redfield Jamison
My preferred work on the subject.
I met Dr. Jamison a couple of years ago, I was grateful to have the opportunity to tell her that she was one of the three people responsible for keeping me alive. This book helped me understand that it was biology that had betrayed me so badly—not my character. Skip the part about Meriwether Lewis—it’s not that helpful.

The Suicidal Mind
Edwin Shneidman

November of the Soul: The Enigma of Suicide
George Howe Colt

Wednesday, November 12, 2008

I want to say this, but I can't

This is a personal matter and a personal request for reflection on your part. I want you to mull this over. It's not really up for discussion; rather, it's something to think about in the spirit of examining attitudes.

No, I don't want to talk about it, I'm not being neurotic, and I'm not being critical. I'm just asking for sensitivity or a reasonable facsimile thereof if sensitivity is to be absent. Otherwise, my regular level of chronic sadness will only be compounded and I would rather know nothing than know something that makes me feel worse than I do on a typical day.

You've known me for nine years. I helped you start a career, find a husband, and attain citizenship. Because of this, you think you know me, you think you get it, but you don't. I know you, but the opposite has yet to materialize.

In the course of the past four years, I've tried to educate the people who know me about the difficulties I struggle with every day. And I do struggle along a daily path that is often grueling in its required effort, exhausting in its assault on my body, and, humiliating on many levels.

I really don't talk about much of anything of a personal nature anymore and I haven't for a long time. I try really hard not to, anyway, and that means that things have reached a point where there are some very huge gaps in what you (or anyone) knows about me, my health, and my prognosis. Only my doctor, my husband, and one friend have access to those facts. It is safer for me, safer for my future, but mostly safer in that it shields me from being talked about behind my back. There are a lot of details I must remember to keep to myself.

I never want my successes or failures to be blamed on my health, nor do I want to be held up as an example of what "people like me" are or do. I learned the hard way that as long as I just keep living up to expectations and others' perceptions, my life won't be up for scrutiny, speculation, or judgment. The only way to make sure I stay safe and under the radar is to shut up and keep up, at any cost. Any cost.

I doubt anyone has noticed just how deeply I've withdrawn, and that's actually a good thing--it means I am an outstanding actress and I am meeting everyone's needs and expectations, leaving no room for accusation or "See? I-told-you-so." If nobody is feeling disappointed by their interactions with me, then I am doing everything the way I need to in order to stay safe. Safe, safe, safe. I will be pleasant and friendly even to people I can't stand if it will keep...me...safe...from judgment.

It takes a lot of work to stay safe and out of the judgment zone. Every minute, every day, I am vigilant: Vigilant of my own behavior, vigilant of other's attitudes toward me, vigilant about listening to the words and attitudes of people around me, and vigilant about making note of what is said by those with whom I interact. People reveal a lot when they think it doesn't apply to the person with whom they are discussing a matter. What I see and hear is so abundant, I come home and write about it every night. It helps me see where there might be cracks in my own security walls.

Anyway, in all of that listening, I learn. I become aware. I take note and I see clearly what other people believe and think. Sometimes I wish they would be more careful, too, but we all wear our attitudes on the outside when we don't put enough effort into hiding them.

Here is an example. I am going to paraphrase a conversation, and I want you to think about how it sounds with a simple change in vocabulary that should alter nothing, yet, says everything that I, May Voirrey, need to know. Everything.

Sonja reaches over to the passenger seat and pats me on the knee. She says, "Don't take this the wrong way, but I think I see some symptoms of diabetes in Susan."

I reply, "Hmm. No, I don't see that at all. Although she does seem to have a lot of anxiety."

I think, "Well, yeah, I do have diabetes, but is she implying diabetes is something to be ashamed of? Should I worry that my medical condition is socially offensive, even to people who know me as more than just a pancreatic malfunction, a chemical blip??? Wow. Am I really something less because I have diabetes? It's not like there was anything on this planet I could have done to avoid having it. I guess I was absolutely right in thinking that people will say they've read the brochure and they understand, but in the end will talk about me behind my back if they find out I take insulin or that my illness affects how I feel from day to day. The world disappoints me yet again. Note to self: Never, ever mention the diabetes to anyone. You never know what attitudes people harbor, but my observations tell me that diabetes seems to carry a lot stigma, even among people who have the facts."

Do you know what my worst fear is in the whole world? My worst fear is that my husband will die. My second-worst fear is that my brain will stop responding to the many therapies it endures; therapies I endure so you and my husband (and only you two) do not reject me in my respective roles as employee and wife. Between you, you two determine whether or not I have something to anchor me. I endure physical and emotional discomfort you cannot imagine
not for my own wellness, but only so I can function in a way that is pleasing to my boss and my husband. But you probably knew that. I'm sure I said it before somewhere along the line.

Now I worry that my attempts at education haven't had any effect at all because it seems you look for evidence that "diabetes" is seeping through the tight seams I've stitched up so neatly around myself. Stop looking for what isn't there. Stop looking for it in other people. This particular illness presents so differently from patient to patient, it can be nearly impossible for a trained professional to recognize it as the same illness in two people who have it. You know that, right? No two cases are the same. Ever. When you imply that Susan has what I have, and that you know anything about how specifically the symptoms have to fit together to qualify as a diagnosis, you demean me with your belief that the illness is so ridiculously mundane that anyone can diagnose it. If only it were so simple. There is good reason it takes, on average, ten years of treatment before a correct diagnosis is made. It's not because patients don't seek help--it's because the helpers rarely get it right the first four times diagnosis is attempted. And those are M.D.s

One of the reasons I try not to talk about my cerebral anomaly is that (1.) nobody wants to know. Who gives a fuck, seriously, as long as I'm meeting my performance benchmarks in life? and, (2.) it doesn't change anything. Just know that if my brain ever betrays me again, I will not embarrass or disappoint you, my husband, or myself. I am a trooper and a hard worker and one who doesn't give up on things easily, but let there be no doubt: I will die before I will suffer again the way I did for four excruciating years. What I know that you do not know is how that time felt from my side of the fence. Had I known at the outset what was ahead of me, I never would have made that journey. Having made it, though, I remain obedient and compliant, doing everything that I have been instructed to do, never missing a step or stepping out of line. I am too afraid of the penalty.

I know that my illness is something that is likely to anger you, irritate you, disillusion you, and inconvenience you. I can't control how you react or what you believe, but your reaction did teach me the importance of not letting an illness be apparent if I need to be around you. You must always understand, though, that if my health seems compromised, it isn't from lack of vigilance and medical treatment on my part. I do what I can, nature does what it will. We fight about it every day.

This rambled a little bit, but there was a point. In the end, I'm left mulling something over, too. My illness is hard, but I don't see it as a source of personal embarrassment. When you said to me so condescendingly, "Don't take this the wrong way..." I realized that in that moment, I probably did understand you--and your perceptions--perfectly. What I heard is that you still perceive my illness as a personal shortcoming, and, it's offensive to say someone has it.

Monday, November 10, 2008

The personal cost of conflict

Today is November 10, a day that bloggers around the world are dedicating their space to raising awareness of refugee issues. The issue most in the spotlight, though, is the impact the world's conflicts have on families.

Think about the dream you had as a child. Do you remember? It was the dream where you were standing alone in a strange place with nobody familiar anyplace nearby. You were physically OK, but the fear and swelling panic in your chest were almost unbearable as you realized there was no familiar face to anchor you, no family member to accompany you as stumbled through the chaos.

That dream.

Around the world, millions of refugees have lived this scenario as a frightening reality. Fleeing for their lives, they became separated from family, from their spouses, from their young children. They didn't know where to look for their loved ones, and there was no way to find out where to start. But they do look, and they start in some of the most dangerous places they have just fled.

This reality isn't characteristic of just one conflict; it is a running theme that has continued across continents and through centuries, snaking its way from family to family, war to war.

1995. Somalia. Sitey was awakened by the sound of gunfire outside. She lived in the same village her family had lived in for generations. They were pastoral farmers, poor, but self-sufficient. She gathered her infant son close to her chest and looked out the window. Somali soldiers were attacking her neighbors outside, and homes were succumbing to bright fires that snapped like angry, biting jaws. Sitey roused her other children and her husband, and all fled into the night.

When dawn came, Sitey was missing two children. She waited for as long as she could--long after her family and neighbors had run to safety. Her children were nowhere to be found. She started walking toward the Kenyan border, but when she caught up with relatives, she asked them to take her baby--she would not go on without looking for her kids.

Aliza is tall and dark-skinned, a Sudanese woman of Chiluk heritage. She stands tall and walks gracefully, and her beautiful smile is enhanced by her high, striking cheekbones. She is soft spoken. For the first time in the three years I've known her, Aliza spontaneously begins talking about her life in Sudan.

Shortly after her first wedding anniversary, her husband disappeared. He vanished without a trace. Aliza had an infant son and no money. She braved her first ride in a rickety rowboat as she set off to look for her husband in the last place he had been seen. All she could think about was that when her older brother was only ten years old, he was taken at gunpoint by soldiers. He was forced to serve, forced to fight. Neither Aliza nor any family member saw the boy again, although they searched frantically, asking strangers in nearby villages for any information about the child. He wasn't seen again until he was 26 years old and very, very far from home. By then, years of a brutally hard life--most of it spent firing a gun--had taken their toll. His family tried to scrape together the money to go to him, to bring him medicine, but time ran out. He died less than a year later of respiratory illness. Aliza said, "And he died alone, not even one person to be there with him. Nobody knew where was this boy. Nobody saw him. He was alone. He was my brother. I waited for him all those years, but I didn't see him."

Selver watched his home burn at the height of conflict in Kosovo. He gathered his kids and headed out of the village, nervously taking note of the bodies of his neighbors strewn along the side of the road. Villagers came on foot and on tractors--their cars had been confiscated by the Serbs. They family made their way out of town, only to be stopped by soldiers at a Serb checkpoint. The Serbs collected everyone's documents and identification, stripping the Kosovars of their proof--proof of everything they were or had been.

When Selver made his way to the Albanian border, it was raining. A makeshift refugee camp had started to emerge from the empty fields, and a growing number of plastic tarps stretched across the uncertainty. Selver kept his kids close. Several of his friends were missing, and he knew that once a person strayed from sight here, it was possible they would vanish with the morning fog. Selver knew that no matter what else he and his family did, they must stay together. He told me once that so many people from his village disappeared, he couldn't name all of them anymore.

To be a refugee means many things. It means starting over with the never-completely-lost hope of going back to what ended. It means having nothing but your life. It means knowing how strong you are and how resourceful you can be and that's how you survived. It also means facing loss. Loss of home, loss of the familiar, loss of the past and perhaps of the future only dreamed of. For many, it also means the loss of loved ones.

Liberata lost her children on a dark night in eastern Congo. When they fled, they ran to the forest. In that night of chaos, Liberata had to keep going, hoping against hope that her kids were doing the same thing somewhere close by. Liberata walked through the jungle for months. She made it all the way to the Congo River and headed north, walking, walking, until she crossed the border into the Central African Republic where she officially became a refugee. She has no idea where her family members are. None. She is here with a daughter and a nephew. She is down one husband and four children.

For anyone who has never experienced war, there is no way to comprehend all of the levels of loss. Losing everything has no real meaning until a survivor realizes there is no family, there are no friends. They might be alive, they might have perished. Are they looking for me? does someone know where they are? It is the not knowing that ignites both hope and gut-clenching anxiety. To lose something precious is painful; to lose something and not know if it is really lost or just waiting to be found is maddening.

Aliza was eventually reunited with her husband, but friends who were secretly jailed never came home. Sitey located her two children in the orphanage at the Kakuma Refugee Camp in Kenya. Unfortunately, it was a brief moment of reunion--Sitey's immigration documents were ready, and her departure to the U.S. was imminent. She hasn't seen her kids in five years, and they are not eligible to come to the United States. Sitey grieves deeply about this, but she is comforted by at last knowing where her children are in the world.

After World War II, the Red Cross spent a great deal of effort trying to reunite Europe's war refugees. It was a tedious and difficult task since so many people had perished or moved on. The Red Cross continues this work in post-war settings today.

There is another group, though, that is using the power of the Internet to help refugees worldwide connect with their lost loved ones. Refugees United is a very small nongovernmental organization providing a secure and widely accessible portal service for separated refugees. Check out their Website, read about what they do, and spread the word. Silence is the enemy of the lost.

Saturday, November 8, 2008

The Lazy Blogger

Yeah, you're right. I've been phoning it in.

Monday, November 3, 2008

Some days are better

The last few years of my life have had far more bad days than good ones. I take bad days for granted. I feel bad, or I gain weight, or I'm sick or I get hit with an unexpected medical bill, or I lose something I desperately need.

Today was not that day. Although my weekend was rife with disappointment and resentment, I'm taking a moment to appreciate the following grace notes from today:

  • My 5-year car loan was finally paid off this morning.
  • I got a present in the mail. It's something I need for the startup nonprofit. It's small but really helpful and it was unexpected.

  • I was able to book an appointment with a private hairstylist. She's not in a salon--she has a private studio and an outstanding reputation. I'll spend the $70 if it's the right haircut. Oh, and I got an appointment within a week of asking for one--unheard of.

  • When I got home from work today, there was a rebate check in the mail from 1-800-Contacts. I had forgotten all about it, especially since it really does take eight weeks.

  • There was a box sitting on the kitchen counter with an Indiana return address. I don't know anyone there, so I was puzzled. I opened the box and inside there was a brand new Flip video camera. Ah, yes! I got this as a reward for submitting 17 reports to Angie's List in October. Sweet! It would have been reward enough that my household is going to be the subject of a future article in the Angie's List magazine. Fame but absolutely no fortune.

I celebrated all of this by spending an hour alone in the bedroom where I immersed myself in voting. The mail-in ballot in my state was huge. Two long cards, double-sided. It was exhausting, but my civic duty is done. Almost. My ballot still has to be hand-delivered to the drop-off site tomorrow.

Now, it's fingers crossed that my car doesn't blow up or get demolished. I cannot afford to go through this process again (Experience death of car. Buy new car. Pay off car. Experience death of car via crash with errant blue Volvo. Buy a new car. Pay off car.) That car crash was the sart of my great unraveling, and I really, really can't afford to go through that again.

Saturday, November 1, 2008

Guilty pleasure

Every Saturday night, I make a date with destination television. I get comfortable and turn on Fox and sit spellbound for an hour of America's Most Wanted.

And that's pretty much the highlight of my weekend.

Wednesday, October 29, 2008

Prime time problems

The TV droned on in the background of our cooking and chatting about the day. I wandered into the living room just in time to see a commercial for an upcoming program about an obese woman who lost some weight. A lot of weight.

Later, The Biggest Loser came on. I flipped channels, and every time I passed this show, I thought, "Shit, when did weight loss become a goddamn game show? Where's the healthy spin on that?" There were weigh-ins and disgusting plates of high-calorie temptations, insults and recriminations, but no details on body mass index, blood pressure, or emotional wellbeing.

Perusing Discovery Health, there were at least three programs about an obesity clinic, a group of doctors who do bariatric surgeries, and a story on Entertainment Tonight about Valerie Bertinelli's weight loss and the book that was just published about it. Is that really a book worth publishing? Aren't there more valuable wayas to use a printing press?

When America became a nation of overweight slugs, it was, initially, considered a health crisis. Now it's considered a sport, a medical drama, entertainment. What have we become as a culture? Seriously. Fat is prime-time entertainment both on network television and on cable, but nowhere has anyone metioned the underlying psychological causes of the problem, nor have they shown any compassion for those who are the subjects of these programs. Compassion is conspicuously absent.

I have a lot of fat clinging to my frame, yet I can't imagine my fat being the subject of a magazine article, book, sitcom, documentary, talk show, or reality TV. I prefer to be known for my brain capacity not my high circumference, but even if I were brilliant, I am still nobody and nobody gets press coverage for that.

Be afraid. Be very afraid.

Saturday, October 25, 2008

Time management

It's 1:15 a.m. I'm awake, but not because of insomnia. In approximately 12 hours, I am scheduled to do a presentation at a professional conference. At least I didn't have to travel to this one.

1:15. In the morning. I haven't written the presentation yet. I haven't assembled the props yet. I haven't checked to make sure the projector will cooperate with my laptop. I haven't ironed something to wear because I have no idea what I will wear.

This is not a confession. The truth is, I am ambivalent about this presentation. The topic is a little obscure and we're scheduled in the last slot on the last day. It wouldn't surprise me if it turns out that there are more of us on the presenting team than there are in the audience.

I have hours of work ahead of me because, ultimately, I won't do this in a half-assed manner. It's not my nature. Still, I wonder. There are four of us presenting and two more assisting, yet, I'm the only one working on the content and PowerPoint. I asked for all sorts of things from the others on the team. I gave them 89 days to prepare. When it was time to put everything together, I had nothing from the other people. Nothing.

Maybe I don't care about the impression I make. I am actually pressured by something else: Reputation. I didn't keep a low profile for many years. I went to meetings and workshops and I presented at conferences. I helped plan conferences (I don't recommend that for the faint of heart or easily stressed). People know who I am and they know that I do good work, and damn it, I can't skate through this thinking nobody will notice if I phone it in. I took a two-year break from presenting at conferences, but I think I should have made that three.

1:15 (a little later). It wasn't procrastination. My job--the part I get paid for--has been increasing in workload for months. I am one person doing the work of two (maybe three), and there's still too much to do. There was no time to steal from the regular work to devote to writing the presentation.

I think I am precariously close to burnout.

There's no time for burnout. I have a presentation to finish writing.

I'm tired.

Tuesday, October 21, 2008

Win some, lose some

Mental health has been very much in the news for the past month or so. Some of the news has been encouraging, some has been distressing, and some has been chewy food for thought. Here are some of the highlights:

We win one. Finally.
In Washington, DC, this month, the economic bailout plan got a lot of attention. There was a provision attached to the bill that got far less attention, yet helped to bolster the chances for passage of the controversial legislation. The Mental Health Parity Law had been lingering, if not languishing, on Capitol Hill for 12 years. It was the personal crusade of the late Senator Paul Wellstone and Senator Pete Domenici. After Wellstone's death in 2002, Domenici continued to keep the bill in play with lobbying support from advocacy groups such as NAMI.

The health insurance industry fought this legislation tooth and nail. Ultimately, though, the tragedy that is the US economy presented exactly the right circumstance that made the law a reality.

Under the Mental Health Parity Law, insurance companies and employers will no longer be allowed to make a benefits distinction based on a patient's type of illness. Until now, insurers have been allowed to provide fewer benefits for mental illness, or, to charge more money for treating these illnesses than, say, epilepsy or asthma. Whereas hospitalization for a chronic heart condition might be covered for 60 days of inpatient care, a mental illness--with preapproval only--would max out at 25 days per year.

By making mental health care parity law, the government has also paved the way for lessening stigma through legitimization. It won't be quite as easy for insurers to make arbitrary decisions when doling out benefits to consumers of psychiatric and addiction recovery services.

And you lose some.
While listening to NPR the same week that the mental health parity legislation was in play, a story blipped by on the news so quickly, I had to Google it later to make sure I had absorbed the irony. I am sure this story made the news only because of and as a counterpoint to the mental health parity story.

Keeping in mind that health care in this country has little to do with compassion or patient wellness and everything to do with profit, this news gem sparkled like CZ under the bright lights of the Home Shopping Network.

Out west in Denver, the University of Colorado Hospital announced that it will no longer maintain inpatient psychiatric services. The 18-bed inpatient psych services ward sees approximately 750 patient admissions each year; by eliminating this department, hospital administrators say they can accommodate an additional 300 admissions annually. Hospital spokespersons stated that this is in no way a financial decision, it's just that other patients need the beds more than the psych patients do. Could that be the patients whose illnesses are more lucrative for that hospital?

Dr. Greg Stiegmann, vice president of clinical affairs at UCH, said that since the new facility opened roughly 15 months ago, the hospital has been at 100 percent capacity and finding spaces for patients has become increasingly difficult. Upon further reading, I was surprised to learn that University Hospital is a brand-new, billion-dollar facility. I cannot comprehend how, with a decade of planning, ongoing needs assessment, and years of construction, the people in charge of this hospital grossly underestimated how many patient beds the hospital would need at opening and going forward, allowing for population growth in the area.

So, what did the administrators do? They looked at the patients to determine which ones would be the easiest to jettison while allowing the greatest financial gain. The NPR story (which I cannot find!) included a blurb of an administrator stating that it is the hospital's hope that the affected patients will find care within their communities. Errrr....Would that be on the benches in the city's parks?

This story is happening all across the United States. According to hospitalconnect.com, government figures show that, nationwide, psychiatric facilities have decreased by more than 14% in the last decade. The number is expected to keep climbing.

Sometimes we shrug
From CNN: http://www.cnn.com/2008/HEALTH/10/21/Healthmag.suicide.increase/index.html
After a decade-long decrease, U.S. suicide rates have started to rise, largely because of an increase in suicides among middle-aged white men and women.

Overall, the suicide rate rose in the early 1980s, then dropped each year from 1986 to 1999. From 1999 to 2005, however, the rates have increased 0.7 percent annually.

In all, 32,637 people killed themselves in the United States in 2005, a rate of 11 per 100,000 people.

Too bad the newly-in-crisis won't be able to get help at the hospital.