Sunday, June 17, 2007
Anyone with a neurobehavioral illness can tell you about the reality of relationships amidst the chaos of illness. While you are trying to keep yourself moving forward as you push past medication side effects, outrageous medical bills, doctor appointments, physical discomfort, and the stress of not wanting to go on, you may well find that you are walking that road alone. Very alone.
Is it human nature to abandon even the people we love when the situation becomes awkward or uncomfortable? For some people, it is. When they are used to knowing you will be there to listen, to help, to support, they are there, too. When they know they can count on you to be fun and funny, articulate, level-headed, and nurturing, they'll be there. When they know you can always come up with something interesting to do or to talk about, you will not be alone. However, you may be left grasping for explanations when you realize that if you don't fit your usual image, when you are not able to sustain the personality you have when you are well, when the going is difficult, painful, slow, and unpleasant, even the people you trust the most might bail out. Even worse, when you start to stabilize and heal, they may reappear, expecting things to be as they were before, because surely the coast is clear and your ordeal hasn't changed you a bit.
This situation isn't unique to people with neurobehavioral illness or depression. Ask anyone who has lupus, cancer, fibromyalgia, or chronic anything; all will tell you about the friends who were there and the friends who weren't anymore.
Someone told me that the reason people act this way in the face of discomfort is because they don't know what to do or say, so they fade back. They can't empathize enough to put themselves in your place because that is too frightening a thought to even contemplate. They can't imagine having to change and adapt to the new you, and anyway, it is far easier to walk away. In response to this, I say bullshit. You don't have to say the right thing or even anything at all. You just need to show your solidarity and keep reiterating that you care. Unless, as it turns out, you don't.
There is another side to this issue of friends. There is the story of those who stay, those who tenaciously hang on with you for the harrowing ride and for the long haul. In my case, I have been able to count those people on three fingers, and I am married to one of those. And then...there is a fourth person who entered my life amidst the fray, and I'll get to that in a moment.
Going through the life changes brought about by chronic illness really does set the stage for people to show their true colors. For me, much of this experience was devastating, at best, and disillusioning at least. But then, I realized that a dedicated spouse and two fearless, unshakable friends may be enough to get you through that long, dark journey of the body and soul. My love for these friends has gone to a level deeper than I ever imagined, and I know that these friends understand that despite the circumstances that have transformed me, ultimately, I am still me, despite those profound changes.
Sometimes, the cosmic forces send someone to you who you never saw coming, but who you needed more desperately than you knew. I am not religious, but I do believe in karma and cosmic blessings. When my struggle left me wrung out and wasted, I depended heavily on an Internet forum for support. Through this online community, I met one of the most special people to have ever come into my life. She didn't know me, yet she did--she understood me. She took the time to listen and to share her own experience as a means of showing me a way to understand my own. By way of the Internet and email, we became...friends. The real kind. The kind you keep, the kind you work to keep because to do otherwise would be an unconscionable waste of love.
Her birthday was this week, but I was the one who received the blessing and the gift. My newest friend came from out of state to meet me and to tell me how important this friendship is to her. We were together 12 hours, but it felt like a moment. It felt like we had always been there, together, laughing, talking, understanding. In an almost Hollywood-scripted coincidence, my other soul friend flew into town for a business trip on a moment's notice. For a short time, the visits of these two friends overlapped, and I sat there, wholly conscious of the love in my life and the blessings pouring over me. Perhaps even more importantly, at that moment, I realized I was letting go of the bitterness and anger that had twisted into my core. I could see that I no longer had any use for that kind of resentment. My friends were here, and I hoped that I would always remember to be present in their love, to never take it for granted, and to always, unfailingly give whatever I could whenever I could to be the best friend possible to these two women, my husband, and my other remaining friend, who also happens to live in a far-away state. I am responsible to hold fast to this precious treasure.
Divine providence is a thing of astounding beauty.
Thursday, June 14, 2007
Wayne LaPierre is not what I would call an eloquent spokesman for his or any other organization, yet there he was pontificating on the need to keep firearms out of the hands of the mentally defective. No clear definition yet of what that means.
Rather than repeat myself, I prefer to direct you to About.com's Mental Health/Bipolar Disorder Website. When the bill passed, I wrote a letter to the editors of this site recommending that they address the issue on their site, especially for those who were unaware of the legislation. (Click on the underlined hyperlink in that previous sentence to access the article.)
I write under no fewer than six psuedonyms "out there" because stigma is very real in this culture and I can't risk being marginalized any further. The "community member" they quoted is me.
Wednesday, June 13, 2007
Getting stable was a long and arduous ordeal. The thing about BP meds is that the same medications do not work for everyone, and often work differently on different people. There's no way to predict how a patient will respond to a particular medication. The only way to find out is to try it. In a world full of miraculous medical advances, treating BP is really just a matter of throwing darts. If that's not enough to make you lose your faith in modern medicine, then I'm not sure what is.
I read somewhere that researchers have only accounted for 20% of the brain's secrets. That means that they have no idea what's going on--or why--in the other 80%. That is not an encouraging statistic for those of us who are having a bit of brain trouble. Advances such as the functional MRI allow us to see brain activity in real time, but it's like watching a foreign movie without subtitles--you can get a general idea of what's happening on screen, but there are bound to be gaps. Big gaps. The brain is akin to an Almodovar film, which means without subtitles you're pretty much at the mercy of speculation.
Much of what is known about the bipolar brain has come about via autopsy data, often post-suicide. Much of that information is fascinating, if not disconcerting. Dr. Kay Redfield Jamison, a Bipolar's Bipolar, explains the research findings in her books, An Unquiet Mind and Night Falls Fast. I took comfort in Jamison's reassurances that my condition is a physical problem, chemical in nature. It just happens to manifest though my thinking and behavior, and that makes it hard for "normal" people to grasp let alone sympathize with my suffering. That includes a bit of neglect from the medical world in general.
Lithium has been the most interesting drug among those in my arsenal. While it has done a stellar job of regulating my mood swings, it has also bestowed upon me a lifetime of dizziness, diarrhea, loss of mental acuity, and dry mouth. I will probably fry my kidneys at a young age, and thyroid failure is almost guaranteed. The most dramatic and noticeable change, though, is that lithium initiated a 50-pound weight gain that came on with alarming speed and didn't slow down and stabilize for almost three years. I look like crap, but...I'm a lot more tolerable to be around.
EMSAM lifted me out of a seemingly incurable depression. It has done what no other medication was able to do, and as a bonus, after worrying my way through a flurry of questions, I found out firsthand that the people at Bristol Myers Squibb are quite lovely (not in keeping with my deepest-held beliefs about big pharma and the people who keep it running).
Lamictal is the epilepsy drug that seems to broker unity among my other medications. There are conflicting reports about whether this is really an effective drug for treating BP, but for many of us who take it, there is no doubt. Lamictal makes everything else work together.
I have insurance. I am extremely fortunate. I have spoken with many bipolar patients who do not have access to the medications they need because the cost of BP treatment is astronomical. It's appalling. For several months out of each year, I am, for all intents and purposes, uninsured while I whittle away at my very large deductible. It is painful. My pharmaceutical bill alone hovers around $600 a month. At least the lithium comes in a generic at the bargain price of about $6. That leaves $594 for four other medications. Per month. And people wonder how the mentally ill end up homeless and hoping for hospitalization.
For a long time, I resented the hell out of the money I spent on my Bipolar Disorder. There isn't a day that goes by that I don't wonder if maybe--just maybe--I could get by au naturel, no meds at all. Actually I tried that, and the results were nearly tragic.
Elizabeth Kubler Ross nailed it when she articulated the stages of loss and grief. Recent studies show that Ross's model, although correct in its content, is not linear. Ask anyone with a chronic illness, and they'll tell you what I already know: It's more of a two-steps-forward-one-step-back process of getting to acceptance. Today I am accepting, yesterday I was bargaining, next week I could be in a bit of denial, I continue to revisit anger, and although I think I'm done with depression, it's just a fact that this one can smack me around at any time. This cycle doesn't stop just because you've visited each station. It's not a progressive dinner; it's a complex negotiation with a most unpleasant reality.
Was mich nicht umbringt macht mich starker.
If someone had told me three years ago that getting treatment was only the first step, the easy part, I would have shrugged off the thought with unbridled hubris. I think there is a reason we can't see our future. We can only hope and speculate, and believe we have a reasonable idea of how things will unfold, but not being able to see affords a protection we seldom appreciate. Had I known what was ahead of me, I would have quit before I got started. I never would have thought I had the courage to face the pain, the frustration, the devastation and the astounding loss that were yet to come. Had I seen the whole picture in an advance screening, I would have opted for jumping off of the bridge instead of crossing it.
If you haven't been there, you can't possibly imagine. There are still a few more bridges to cross, and it's probably to my benefit that I have no idea what the tolls will be. I don't need to know. Not yet.
Tuesday, June 12, 2007
We got buried in snow around the holidays, and the snow was relentless. The term "Stir crazy" actually had meaning to me. I couldn't leave my house, and nothing was open even if I had.
Spring rolled in with cold temperatures and a lot of wind, and deluges of rain. It's actually raining now. I feel like I'm back on the East Coast. The wind is still here, too. In what is otherwise a very dry climate, it's humid. And cool. Where is the early summer weather?? My mood depends on abundant sun and pleasant days to thrive. I'm not thriving.
So, a couple of weeks ago, I had a mammogram. It was raining then, too, a blustery day with whipping winds and stinging bouts of hail. The sky was dark as twilight, and the whole atmosphere felt ominous. I should have known. There's no history of breast cancer in my family at all. My gyno had to nag me for three years to get me to make an appointment, and even then I did it begrudgingly.
This mammogram hurt like hell. I thought my breasts would never regain their shape. "Enough," I thought, "I'll do this again before I'm 50 and no sooner." Ah, not so fast. Apparently, there is something on my films that requires "further evaluation" plus ultrasound, despite the fact that the nurse told me "It's almost always nothing."
If it's probably nothing, I don't see a lot of point in going to the appointment.
Even if there's something as serious as cancer, I can't afford to treat it. Why would I treat it? I'd come out the other side bankrupt, unemployed, homeless, and weak. Ooooo. There's something to live for.
I have enough to manage with BP, work, home, and my mind. I don't need this. I don't have the energy for this.
Sunday, June 10, 2007
I haven't slept for seven years
I think I've forgotten what it's like to dream
But I know I used to close my eyes
and drift off into deep blue skies
At least, that's what I do remember...
To a Maddening Ghost, Sara Hickman, copyright 1993-2007, Sara Hickman/Sleeveless, LLC
Every once in awhile, you hear a song and it's so relevant, it stops you where you stand. The first time I heard the opening lines of this song, I literally got goosebumps and my breath caught in my throat. It was the first time in my life I heard someone describe insomnia so eloquently.
What do you know about insomnia? It's obvious we live in a sleep-deprived nation--just watch TV on any given evening and engaging commercials for Lunesta, Ambien, and Rozerem are ubiquitous. If only sleep itself would be present on such a regular basis.
I have endured bouts of insomnia from the time I was about 15 years old. They came on without warning and have dogged me ever since. When I had my pre-college physical, I remember the family doctor noting in my file, "Has chronic, episodic insomnia." My mother insisted I would outgrow it, but I never did.
If you have never had to make it through night after night of sleeplessness, you can't imagine how frustrating and depressing it actually is. I want to sleep, really, I do. If you say you can't sleep, almost anyone you talk to will have a quick remedy to recommend, and I can assure you that none of them are effective. My latest drug in the war on sleeplessnes is Ambien--Ambien in any strength and form. I feel like I'm collecting the whole set, and all of the bottles are lined up in the cabinet from mildest to strongest, regular on the left and CR (controlled release) on the right. They mock me, those little amber bottles from Walgreens. Hope springs eternal, though, so I keep taking the medication, usually to no avail.
One of the other medications I take, EMSAM, has "sleep disturbance" listed as its first possible side effect. No kidding. I was barely making friends with the sandman before EMSAM came into my life, and since I've been slapping those patches onto my body, sleep has become something I would dream about if I could ever achieve REM sleep.
Each night I lay me down to sleep
The Lord my soul I pray to keep
But as he watches over everyone
My night has only just begun
Staring at the ceiling...
Sometimes I think Sara Hickman is channeling me. Or I'm channeling her. To a Maddening Ghost is just one of many of Sara's songs that sound like they're based on my life. Sometimes it's spooky.
Sara says that her mind just won't stop and that's why she can't sleep. There are a lot of things you can do for that particular issue. My problem is strictly chemical, the result of neurotransmitter traffic that won't let the adenosine cross the intersection, so to speak. It's all about the brain, baby, and mine is not interested in getting any downtime. Sigh.
According to the National Institutes for Health, at least 40 million Americans suffer from chronic, long-term sleep disorders each year. That means that although I'm not alone, it frightens me that there 40 million people out there wandering around in my same sleep-deprivation-induced stupor. The NIH has a few tips on sleep hygiene, and let me tell you, I am the poster girl for sleep readiness, but to no avail. I am getting by on about four hours of sleep per night; unfortunately, those four hours do not come in a row. Yawn.
Today I stopped at the bookstore on my way home from work. I passed the sale section and found a book with 20,000 keys to interpreting dreams. Although the book looked intriguing and I almost bought it, in the end, I shrugged my shoulders and thought, what's the point?
Last night, after trying in vain to fall asleep, I got out of bed and moved to the couch thinking that a change of venue might do the trick. I lay on the couch, listening to the sound of distant traffic on the highway (something I don't notice during the day), the shafts of light coming in from the street and the moon, and the clicking of my dog's nails as she came down the hall checking on my whereabouts. It was cool in the living room, and very still. I drifted off, nearly slipping into the dreamworld, when something touched my bare ankle and I bolted awake. My cat, who is obsessed with any lotion from Bath and Body Works, had stealthily made it onto the back of the couch and upon detecting the irresistible yumminess of coconut-lime-verbena lotion, decided that my ankle was the perfect midnight treat. Damn it.
I envy people who sleep well. I envy people who fall asleep quickly and wake up refreshed eight hours later. I yearn to know what it's like to sleep without trouble, without effort, without going into sensory deprivation via sleep mask, earplugs, and Breathe-Right nasal strip. Apparently, when I do sleep, I snore. What a fetching bedtime specimen I must be.
Every night, I brush my teeth, take my medication, and hope that this time, this night, things will be better. Usually they aren't and I find myself giving up and doing things like gardening at 5:00 in the morning because I'm bored.
Sometimes I think I can't take it another night, and I won't make it through another hazy day. It's wearing me down. I am worn down. Sara said it best:
Please let me rest in peace
Oh, I'm dying to rest...in...peace
Saturday, June 9, 2007
If you answered "yes" to any of these questions, then you've just nailed the reason why I don't tell anyone about my condition. It's a conundrum. If I tell, then I risk be written off as a mentally ill wacko who has no credibility--the disorder itself gets pegged as the excuse for any behavior that anyone else might not particularly like. On the other hand, by never 'fessing up, I leave myself open to the brazen speculation of others who talk behind my back trying to identify the source of my erratic moods and words. I've decided to let them wonder.
The truth is, if you didn't know me within three years of my diagnosis, then you probably wouldn't have any idea that something had gone so seriously wrong in my brain. I go to work every day. I work not one, but two challenging jobs and I do them well. I pay my bills, I iron my clothes, I work in my garden, and I lead a productive life. This is why I bristle every time I hear that someone has made news because of their outrageous and unconscionable behavior and then chalked it up to Bipolar Disorder. I hate these people and the damage they cause to those of us who are trying to prove how fucking normal we are.
OK, I'm not completely normal, but I try very, very hard to maintain that illusion. Here's what happens when the medications fail:
- I am mean. I am a bitch. I say terrible things to people that are the verbal equivalent of being poked (hard) with a sharp stick.
- I do not sleep.
- While I'm not sleeping, my brain processes thoughts at about quadruple normal speed--at least. Trying to focus is akin to trying to catch minnows with your bare hands, fingers splayed. And it's just as frustrating.
- I spend money like I have the bank account of a lottery winner, just one of several self-damaging behaviors endemic to BP.
- I get depressed. When I say depressed, what I really mean is that I want nothing more out of life than to be finished with it and to die. die.die. Obviously, I haven't killed myself, but I must admit, I remain ambivalent about that.
- When I am depressed, I can do only two things: I can go to work, and I can lie on the couch watching TV. I can also drive while crying--sobbing in fact--without missing a turn or running a stop sign.
Bipolar depression is like the worst depression you can possibly imagine, but on steroids. It is one of the most difficult forms of depression to treat, and for many sufferers, it will always remain stubbornly treatment-resistant. There is a reason why one in five people with BP commits suicide. You really have to experience this kind of depression to even begin to comprehend how bad it is. This soul-gutting depression really does make death seem like a reasonable alternative. Why? Because it hurts. A lot.
A year ago this month, my doctor decided to take the bold step of putting me on a new medication. I don't mean it was new for me; it was on the market only about six weeks when I started on it. To understand why this matters, you should know this: When I was first diagnosed with BP, I read that it takes about three years to get the meds worked out. I felt so bad at the time, I decided that if I couldn't find relief within three years, I would kill myself.
Enter EMSAM. Before I could start EMSAM, I had to get off of several other medications I was taking. That in and of itself made me want to put a plastic bag over my head. During the withdrawal, my brain started having some kind of auto-electroshock therapy. Every few seconds, my brain emitted what felt like electrical shocks throughout my body, ending at my fingers and toes. Every few seconds for weeks. Zap! Zap! Zap! Zap! Zap! It was exhausting.
Then there was the nausea and the vertigo. For some reason nobody has been able to explain, my sense of smell became hypersensitive, and it made the nausea even worse. I couldn't sleep. I couldn't speak right, and I didn't want to even try to be socially integrated. Work was overwhelming, and my memory was like Swiss cheese. I think I missed an entire month's schedule of staff meetings simply because I forgot to go.
EMSAM took forever to kick in, but once it did, my mood improved dramatically. My moods became more stable in general. Who would have thought that a micro-thin, two-inch square of adhesive plastic would be the thing protecting me from death?
EMSAM isn't perfect, but it's close. It exacerbates my insomnia and causes its own special strain of irritability. That's OK because there are treatments for those side effects, and those side effects are a walk in the park compared to the alternative.
More on EMSAM, suicidal tendencies, and insomnia next time.
Friday, June 8, 2007
For the past few years, I've been encouraged by those who know me to start a blog. I hesitated because I worried that someone would steal my words or bully me for my sometimes controversial opinions. It occured to me that anything I have to say has probably already been said by someone else, and, most opinions are controversial to someone, so that excuse was out.
So here I am. I have a brain full of thoughts. A brain full of trouble. A brain that doesn't work according to the manufacturer's specifications. A brain that sometimes betrays me and then confounds me with its paradoxical intelligence.
At the age of 42, I got married for the first time, bought a house, got my first dog, and was diagnosed with Bipolar Disorder. I was devastated to learn that what I had was no mere hormonal flux or chemical hiccup in the brain that could be banished with a short course of medication and some rest. I felt that I had just been handed down a life sentence, a diagnosis that held so much stigma it could not be discussed in polite company nor could it be shrugged off, ignored, or allowed to run its course. This was not the news I had anticipated.
As I added up the denominators and took stock of my life's more notable moments, the diagnosis made sense. It also made me angry. How does someone make it to 42 years old with a malady such as Bipolar Disorder and not know it? More importantly, how do doctors miss it repeatedly over the course of decades of the afflicted trying to get treatment for recurring episodes of what now seem to be very obvious symptoms?
Bipolar Disorder is not my life and it is not the primary subject of this blog. However, to have a workable frame of reference for whatever I write, you need to understand what it is that has such a jarring impact on my day-to-day life. In the three years since my diagnosis, Bipolar has changed everything. Friends I had since the 1980s suddenly couldn't find a way to be supportive, so they ignored me. Family members were so uncomfortable they not only ignored me, they hid. They're still hiding. My career aspirations came to a screeching halt, and I had to learn how to manage the very limited energy resources I still had left.
In the fall of 2003, I sought the services of a psychiatrist after two years of being treated most unsuccessfully by my family doctor for what appeared to be a stubborn, protracted, agitated depression. By the time I made it to the psychiatrist's office, the chaotic malfunction in my head had already started its version of a thermonuclear meltdown, and there was no stopping it or slowing it down. Whatever was in process was going to have to have its way with me before treatment could kick in. It is a miracle that I am still alive.
Bipolar disorder is no mere mood disorder. It is a sleep disorder, a light sensitivity disorder, a collection of brain structure anomalies, a tendency toward significantly uncomfortable irritability and racing thoughts, neurological damage, cognitive deficits, plus a bad batch of neurochemical soup. It is a gross oversimplification to describe BP as somthing as simple as emotional highs and lows, mania and depression. Ha! If only it were so clear cut.
I've had to swallow my pride along with handfuls of medications. I've had to learn that my brain fatigues very easily and my body follows suit quite quickly. Where my energy goes, so go my moods. I've had to tell people to be vigilant about changes in my thinking or behavior so they can alert me to a possible meltdown or hypomanic eruption. I need them to know that there is only so much I can control about my illness, and when I'm in the throes of cycling, nothing I say should be taken too personally. How embarrassing to have to admit that.
To keep my brain on an even keel, I take medication and see a therapist every week. My current daily medication regimine is 650mg of lithium, 200mg of Lamictal, Ambien in varying amounts (more on that later), EMSAM transdermal 900mg (the big girl dose), and Xanax as needed, which lately is never.
Sometimes my brain functions better than most. When I am good, I am very, very good. I excel at my work, and that's something I cannot bear to see change. I teach for a living, a career I came to later in life. My students are adults, and they do not speak English. They are here because they had to run for their lives. Think Darfur.
At the moment, I have students from Burma, Vietnam, Burundi, Rwanda, Congo, Somalia, Ethiopia, Eritrea, Sudan (not Darfur), Mauritania, Ukraine, the Krasnodar region of Russia, Uzbekistan, and a smattering of others. The mix is always changing according to world politics.
In addition to teaching, I connect others to teaching. It's a very people-intensive job, which can be hard for me because I find it agonizing to be around people a lot of the time. Having BP has done something to my social skills, and it's not an enhancement, that's for sure.
For the moment, this is all you need to know about me. In the future, I'll be sure to tell you about my pets, my husband, life in a fixer-upper house, World Refugee Day, why I'm not the liberal everyone assumes I am, unrelenting insomnia, suicide, right-to-die issues, my personal campaign to have the term "mental illness" eradicated from the English language, peri-menopause, and other tidbits of brain overflow. There's plenty in there and I need to make some room.