Voices

‘The disease is personal. The treatment is that elusive’

A ‘Lamatical-Cymbalta-Clonazepam-cranial-sacral, road-biking, chainsawing manic-depressive’ offers vignettes and observations about his journey through, and life with, his illness

If you have a heart attack, you have a heart attack. If you have cancer, you have cancer. If you have diabetes, you have diabetes.

These diseases, horrific as they may be, have names. In general, medical professionals know what is going on inside you - and which medicines or procedures might help. Or at least how they work…or why they might not.

What we call “depression” has many names. And - despite all the talk of serotonin, norepinephrine, and dopamine; of SSRIs, MAO blockers, and tricyclics; of cognitive therapy, shock therapy, and homeopathy, naturopathy, and shaman therapy-diagnosing and treating it is a crapshoot.

As far as I'm concerned, the most trustworthy healers - whether western or eastern, traditional or alternative - are those who have the wisdom to admit they don't really know what's going on, but do have the experience and sensitivity to intuit what might help.

I've read the diagnostic criteria for major depressive episode, manic episode, cyclothymic disorder, hypomania, bipolar 1, and bipolar 2.

At various times I could have met all of them.

* * *

Not only are there many names for this disease, there are countless treatments, many of which I had the pleasure of experiencing. All of them work for some people. None of them works for all. And only a few, if any, work for most of the people most of the time.

Sometimes I think they should throw out all the fancy terms and give diagnoses based on our current way of dealing with it.

In other words, at one time I was a fairly high-functioning Celexa-Wellbutrin, acupuncture-ing, business owning, gardening, road-biking depressive.

For several years I was a barely functioning, try-just-about-anything, exercising-like-crazy, manic-depressive.

Currently, I'm a stable, productive Lamictal-Cymbalta-Clonazepam, cranialsacral-ing, wood-stacking, road-biking, writing-a-whole-lot manic-depressive.

And, by the way, before all that, I was an extremely unpredictable cigarette-smoking, whiskey-drinking, vitamin-taking, “self-medicating” manic-depressive.

But, to provide a “precise” diagnosis of anyone, you'd have to add details about gender, weight, genetics, hours of sleep, diet, the number of close friends ... the list is endless.

The disease is that personal.

The treatment is that elusive.

* * *

Many friends have told me that, though they knew I was having a hard time, they had no idea how just hard.

Masking the symptoms of bipolar disorder - or making them seem like not a big deal - takes a combination of careful planning (where you'll be and when), fairly constant dissembling (even to yourself), and, when all else fails, enough willpower to hang in there and act relatively normal until you're alone again.

Kay Redfield Jamison, author of An Unquiet Mind, finished her Ph.D. in psychiatry and managed to become a nationally recognized expert on manic depression before anyone but her closest friends knew she suffered from it.

Sometimes the mask crumbles without warning. One day early on, I picked up the phone, heard my daughter's voice, and started sobbing (not easy for even a grown child to hear).

I recently asked my wife - who managed somehow to keep her own sanity while watching mine crack - if, perhaps, in retrospect, I've been overstating the symptoms. She says that, if anything, I've been understating them

* * *

It's clear from the emails I've received since “outing” myself, just how many people have experience with major depression and/or bipolar disorder-in themselves or someone close…even children.

Occasionally, I hear the list of medications that a kid is taking for depression, anxiety, mania, ADHD, and other psychiatric issues.

I recognize a lot of these drugs, and the idea of a 10-year-old trying to juggle Depakote, Lexapro, Concerta, and Lorazepam makes me a little crazy. Still, I'm in no position to say that anyone is over-medicated…often, without those drugs, the child's life could be even more difficult.

I do, however, suspect that, in some cases, we may be under-monitored.

When you first go on a medication, you might “just” feel shaky, lose your appetite, get headaches and/or nausea, and/or dizziness, and/or insomnia - the list goes on and on. But what's worse is that you might get more depressed, more anxious, more manic, and even more suicidal. And what's positively mind-boggling is that sometimes the drug won't work unless you take more.

Going off a med is even riskier. And, if you do it suddenly, all bets are off.

In fact, one of the many arguments for universal health care is that some patients stop taking their medications too quickly because they can no longer afford them - sometimes with tragic results.

* * * *

I have extraordinary respect for both modern medications and alternative therapies. While we may or may not be over-medicated, we're certainly under-cured. But that's not for lack of trying.

Even the much maligned drug companies are trying to help. The overworked psychiatrists or doctor are trying to help. The nutritionists or alternative healers are trying to help. Sure, these people and companies all have their vested interests in wanting their cure to be the one that works. But to cast aspersions on a whole class of businesses or professionals seems unfair.

There's a certain conceit in the claim that any practitioner could treat the whole person the whole time. Whole person? We're talking 11 systems, 22 internal organs, 206 bones, 600 muscles, 60,000 miles of arteries/veins/capillaries, 100,000 hairs (on a good day), 100 trillion cells. Plus individual combinations of genetics, lifestyles, environment, and astrological influences. Plus individual mental, emotional, physical, sexual, and spiritual capacities and/or experiences.

So, it's worth questioning the underlying cultural assumptions that make some patients feel like failures when they “resort” to western medicine; or feel “weird” when they try an “unproven” complementary treatment.

Patients, especially depressives, have plenty of reasons to fret, without having to deal with other people's judgments about how they're trying to be cured.

* * *

Right now, I am not depressed, bipolar, manic, dysphoric, or agitated. Except for the occasional blip, as long as I take my meds, I rarely experience the symptoms.

I guess you could say that I'm a person living with dysphoric mania or agitated depression, in the same way that someone might be living with HIV/AIDS, diabetes, high blood pressure, or high cholesterol.

Hey, we've all got problems, right?

And many of us have prescriptions and/or a cupboard full of supplements to show for it.

Until, if ever, there are reliable cures that work predictably for just about everybody all the time, patients with those conditions tend to accept the fact that they need to keep taking their antivirals, insulin, beta blockers, or statins indefinitely.

But many depressives - including myself -consider depression a temporary condition, not a chronic disease. I don't picture myself taking these drugs for the rest of my life.

Instead, I think about when it would be a good time (spring) and a good year (well, not this one) to start tapering off. However, if I'm ever convinced the apocalypse is right around the corner, I will rush downtown to the drugstore to stock up on all my meds - at full retail if necessary - before I bother with milk and eggs.

Unfortunately, while there are fairly objective ways of measuring antibodies, insulin, blood pressure, and HDL, depression is just too subjective to define what it would mean to be “cured.”

That doesn't stop people from trying: “Depression recurrence” beats both “cancer recurrence” and “coronary recurrence” by plus-or-minus 3 million web-search results.

So, I suppose, whether I realize it or not, I'll always be living in depression's shadow. Then again, maybe we all are.

* * *

This morning, I'm sitting in a small cabin in Montana, drinking tea, and writing. Outside, it's snowing. Big fluffy flakes. The Grateful Dead's streaming onto my laptop.

It doesn't get any better than this.

Four years ago, it would've been a nightmare. I can still hear echoes from that time:

My flight home is in 24 hours. What if it keeps snowing? What if my ride can't get here? What if we spin off the road into some pasture where we won't be discovered until next spring, except maybe by the coyotes?

What if the flight is cancelled? Did I just smell a little smoke? Must be a forest fire. Didn't they say that if there's a fire out here everyone has to stay and fight it? I'm going to be here for days, maybe all winter - and that's if I don't get engulfed in flames. Calm down, Dave - check the weather again, maybe it's not that bad (I would have been doing this compulsively anyway). Oh, my god - it says there will be an 80 percent chance of rain, and will turn to all snow after 11 a.m.!

When you have some form of anxiety-laden depression, rational thought seems incredibly naive. The world is riddled with minor glitches that can trigger apocalyptic disasters: elevators whose doors pause a second too long before opening, people whose names you've forgotten walking down the street, appointments you're five minutes late for, checkbooks that don't balance, typos in an email you just sent.

Your car doesn't start? Forget it. You're toast.

I'm relieved to be able to make light of this today. And I hope my words bring at least a wry smile to the face of anyone who knows exactly that of which I speak.

* * *

I woke up a little sad the other morning. No big deal.

Plenty of the people I saw that day probably woke up a little sad. It's a far cry - actually, many far cries - from a major depressive episode.

As the day progressed I became increasingly agitated. No big deal.

Plenty of the people I saw that day were probably agitated at some point. It's a far cry - actually, many bursts of inexplicable behavior - from a serious manic episode.

But, confident now that it would pass, the experience gave me the chance to ponder and study the differences between sadness-depression and anxiety-mania more closely.

I experience depression primarily in a swath of sensation that runs from behind the eyes-where tears form-to the base of the throat - where “lumps” form. Occasionally, I feel something called a “heavy heart,” but even that could be more accurately described as a “heavy chest.”

My feelings of agitation, while also centered in the throat and chest, seem to radiate through the whole body.

I assume these experiences are fairly universal - i.e., that I'm not just indulging in sensational narcissism here.

A lot of people, including me, have tried to describe depression. There are even tests you can take to see if your emotions meet the clinical criteria. They ask questions about things like sleep, suicidal thoughts, appetite, weight, ability to focus, and frequency/duration of sad feelings. (Hint: try to score low.)

In other words, while researchers seem to have found ways to quantify certain hallmarks of mania and depression, those of us on the inside are far more concerned with our own qualitative experience.

Is my sensation of sadness a thin scrim that could be lifted by a call from a friend or another quarter pill? Or a seemingly impenetrable dark curtain that could resist the efforts of a psychological or psychotropic bucket loader? Is my experience of agitation something I can get under control with, for example, a good workout? Or will it send me catapulting out of bed at 4 a.m. and onto a frantic walk that just makes it worse?

There's a vast continuum between sadness and depression, minor agitation and mania. And everyone draws the line in a slightly different place.

* * *

Today, 6 a.m.: Sitting too close to the woodstove, waiting for the cabin to warm up. Legs really hot, fingers really cold.

I'd like to go back to sleep, but I have too much caffeine in me. So I start looking around.

My cabin is a mess. I still have boxes of childhood stuff that I've been meaning to sort through (i.e., throw out) for years. I have drafts of novels, piles of paper, and half-filled notebooks scattered all over the place. There are things pinned to the wall I haven't looked at in months. There are paper clips on every surface, photos in frames that have fallen over, tangles of wires near every outlet, little organizing contraptions that haven't organized anything in years.

Four years ago, this scene of chaos would be enough to break my heart. It could have sent me back under the covers, out on a manic bike ride, rummaging in drawers for a Valium or sleeping pill, calling every alternative therapist I could think of - to see if they could possibly see me today, preferably this morning, preferably right now. All while I would be wondering if it was time to bite the bullet and risk another hazardous journey down the unpredictable paths of western medication.

Today, thanks to three different kinds of those medications and, undoubtedly, many mysterious forces beyond my control, I have other options.

I can sit still and keep looking around. I can have come up with some new idea for how to deal with the mess. Then another. And another.

Then I start thinking about writing this piece. And then about going in the house and getting another cup of tea. And then coming back out and writing something else. And then having breakfast. And then taking a nap! It's a beautiful day in the neighborhood.

Actually, all I've done is some trivial thinking that's barely worthy of the word “creative.” But for someone with a history of depression, there's nothing trivial about it. Because, at least for me, the opposite of being depressed isn't really being happy, it's being inspired.

And that may turn out to be a brilliant insight into human nature - or, at least, my own.

* * *

The holidays are the best of times and the worst of times, particularly for those struggling to make it until the turkey/Valium/whiskey kicks in. (Don't try this at home - or anywhere, for that matter.)

At least, on Thanksgiving, you don't have to deal with the everyday stresses of work. It seems perfectly reasonable to say, “I think I'll go to my room and take a little rest,” as opposed to, “I think I'll skip this meeting, go to my office, close the door, and hide under the desk.”

On the other hand, you have to deal with the stresses of being with a lot of people who haven't seen you all year.

And this means masking your symptoms in entirely new ways - unless you want to spend all weekend watching mom and close relatives give you deeply concerned, if furtive, looks.

I assure you, however, that a lot of those “looks” are in your imagination (along with a familiar toxic brew of other paranoias).

You might think that you're broadcasting your fragile state at full volume. But, for the most part, it's muffled by the cacophony of conversation, laughter, china, turkey, television, and the occasional frustrated expletive as some traditional family holiday squabble repeats itself.

Still, it's a time when you reconnect with people who know you in a way that maybe your friends back home don't. I remember my annual Thanksgiving walk with my brother in 2005. It was the first time my nephew joined us. Being able to pepper him with questions about school, sports, music, and the latest technology gave me a lot of “cover.”

My brother did see through some of the act, and a few weeks later I came somewhat clean in an email to him. But, even now, he admits to not really understanding what I was going through until he started reading what I've been writing about it.

Rest assured, even people who can tell there's something wrong have a hard time figuring out how serious it is, especially when you respond with the Traditional Thanksgiving Depressives' Disclaimer:

“Yeah, I had a bit of a hard time a while back, but things are getting much better."

Depending on your circumstances, you might want to add one or more of the following:

“I just started:

• taking a new drug

• doing yoga

• seeing a new psychiatrist

• planning a trip to the south of France.

• writing, painting, weaving, sculpting, baking, and/or having sex again.”

Regardless, the key is to speak really fast and finish the run-on sentence with:

“So hey - how are you doing?”

Now that I'm better, I can honestly say I give more than lip service to the thanks in “Thanksgiving.” And, in honor of the occasion, I will even surrender my usual resistance to resorting to New Age visualizations/affirmations, and surround all of you still in the trenches with intense white light and offer the prayer/mantra I received from a friend during my experience:

“It will pass.

Be kind to yourself.

It's okay to ask for help.”

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