by Terri Cheney
CHOOSE YOUR POISON
I once was referred to a mental health support group located in a spotless, shiny wing of a spanking new hospital. It was full of articulate, pleasant people, and I felt like I might have found a home. Until I started to share my story, and the leader stopped me.
“We don’t talk about medications in here,” he said.
“You’re kidding.”
“It’s our policy. We don’t want to be seen as giving medical advice.”
Well, I thought that was about the stupidest rule I’d ever heard, so I walked out. I’ve since discovered that many other organizations (many AA chapters, for example) don’t discuss psychiatric medications for various reasons. Again, beyond absurd to me. I talk a lot about medications because I take a lot of them, and they’re a big part of my life.
In fact, along with really good therapy, meds are the cornerstone of my recovery. I wouldn’t be here without them. Which doesn’t mean I idealize them, by any means. I probably complain more about my meds than I do about any other subject. But it’s my right—I suffer through the damn things.
Like the other night: completely out of the blue, my body decided to revolt. It wouldn’t obey my stern command to lie quietly and fall asleep. Instead, I started twitching all over. My knees jerked, my back spasmed, my muscles wouldn’t stop fidgeting. I kept trying to find a comfortable position, but the minute I thought I’d found one, some part of me complained. So I got up, stretched, and walked around. The discomfort let up for a second, then returned. I had to keep moving in search of relief.
You know that special agony when you’re strapped into a tiny airplane seat, miles above an endless ocean, and all you want to do is move? That’s how it felt—like I was on a fourteen-hour flight somewhere, consigned to the purgatory of coach, trying hard not to panic. Except there was no airplane. I was trapped inside my own body.
This lasted all night, and when it showed no signs of dissipating, I left an urgent message for my doctor at daybreak. I knew it had to be my drugs. Whenever something truly bizarre goes wrong with my body, it’s always the drugs. I specialize in rare side effects, it seems—like odd rashes and acute photosensitivity and eyelash loss. I’m also not a stranger to the garden variety problems: fatigue, weight gain, acne, tremors, insomnia, blurred vision… You name it, I’ve had it.
But I persist because my mind needs the leash. Sometimes, when my mood is under adequate control, I believe the medication is magic—until it misbehaves and reveals itself for what it truly is: black magic, as much a product of superstition as science. By the time my doctor called me back, I’d worked myself up into a tizzy and had difficulty understanding what he was trying to tell me.
“It sounds like akathisia,” he said.
“Aka what?”
“Akathisia. It’s a painful, sometimes excruciating inner restlessness, usually caused by the atypical antipsychotics. I can give you something now for the symptoms, but we may have to cut down your dose of those drugs or wean you off them altogether.”
That frightened me more than the pain itself. Atypical anti-psychotics—the latest generation of psychotropic drugs—are the main ingredient of my medication cocktail. They’ve made all the difference in the world to my recovery, and I can’t imagine my life without them. I told my doctor just that.
“Sometimes you have to make a choice,” he said, but what I heard was “You can have your mental health or your physical health. But not both.”
Suddenly I felt furious and had to hang up the phone before my rage spewed out all over my doctor. Of course I knew it wasn’t his fault (although that didn’t stop me from being irrationally angry with him). But whose fault was it? God’s? Fate’s? What horrible act had I ever committed to be placed in such an untenable position? It wasn’t fair, and unfairness is a hot-button issue with me. The more I contemplate the injustice of the universe, the more depression seeps into my psyche and drowns out all remnants of reason.
I decided, ultimately, to stay on the drugs. I knew I would. Physical discomfort may be extremely hard to take, but for me, mental torment is unendurable. And it’s dangerous, even deadly, for someone with my history of suicidality. Worst of all, it feels like it’s going to last forever—the body at least has its boundaries, but psychic suffering knows no limits. So in the end I chose to protect my mind. But in truth, I wondered: did I really have a choice? Mind vs. body: which wins?
SIDE BY SIDE BY SIDE EFFECT
“Oh no, not that!”
“Dear God, make it stop!”
“Somebody call 911!”
Stick around my house long enough in the middle of the night, and you’ll be sure to hear me shrieking something along these lines. I wake up in a sweat, shivering and frantic. It takes me a while to remember where I am—that the vampire bats aren’t real, the coffin’s not mine, the earthquake is all inside my head. It’s not my hormones raging, it’s my dreams. They’re so vivid and terrifying my subconscious can’t cope.
I’ve repeatedly complained to my psychopharmacologist about this. His explanation is that several of my bipolar medications can cause extremely vivid dreaming. “But of course the content of your dreams is up to you,” he said. Meaning, I suppose, that if I were saner I could be enjoying the fruits of my drugs and having dreams of wild sex and winning the lottery.
I’ve experimented with all sorts of ways to reinvent myself as a dreamer. I’ve tried acupuncture, hypnosis, visualization techniques. I’ve meditated before falling asleep. I’ve abstained from spicy foods and alcohol and coffee. I’ve exercised, not exercised, I’ve tried it all—all except giving up the pharmaceutical agents that are vivifying my dreams. It’s ironic: they keep me sane during half of my life, the part where I’m awake; but they make me quake with terror during the other, more defenseless half.
Does there always have to be a trade-off for sanity?
It’s a question I’ve grappled with most of my adult life, since most of it has been spent taking psychotropic drugs. I can only begin to list the side effects I’ve had to endure: a forty-pound weight gain from one medication; dangerous fainting fits from another; nausea so intense I was sure I was pregnant; and then the general dopiness, fuzziness, and zombiedom I’ve come to expect as a matter of course.
My best horrible side effect was when I inexplicably started lactating one day while I was arguing a motion in court (and no, I wasn’t pregnant). Milk just started pooling out of my breasts, obvious to anyone who dared to look. The judge took pity on me and asked if I needed a recess. That gave me some much-needed time to look up a case opposing counsel had just cited, which ultimately helped our side prevail. Had it not been for my mental illness, the malfunctioning medication that shot up my prolactin levels, and my resultant leaky breasts, I doubt we ever would have won. Justice, that day at least, was served.
But most of the time, I’m just plain cantankerous about the compromises I have to make. When I travel, it’s absurd how much fuss and bother I have to take over my myriad of pills. A few years ago when I went to Dubai to speak about my mental illness—at a psychiatric convention, no less—I was required by the laws of the United Arab Emirates to keep all my psychotropic medications in their original containers; get sworn affidavits from my prescribing doctors; have those affidavits notarized; then get them officially certified by the California Secretary of State. In the end, I had to obtain special permission from the consulate in Dubai to bring my drugs into their country. I try my best to see the dark humor in things, but that episode still makes me fume.
But am I angry and upset enough to stop taking the pills? Not yet. Although I know a lot of people have been helped by alternative remedies, and I definitely believe they have their place in recovery, for me they only last as long as the placebo effect. But when the drugs work, they really work. They keep me alive and relatively balanced and safe. Staying compliant on my meds is a big sacrifice sometimes, but it’s one that I’m willing to make and keep on making because right now, drugs
feel like my last, best hope. It’s the Dark Ages, I grant you—even in ultra-civilized Dubai—but for me they’re a glimmer of light.
MIND CANDY: THE EPIDEMIC OF OVERPRESCRIBING
A friend of mine recently told me that he had decided to go off his antidepressant because he felt “too mellow.” I stared at him in disbelief. My life with mental illness has been many things—tumultuous, raucous, ecstatic, chaotic—but I would never in a million years describe it as mellow. Mellow was something to aspire to, a far-off goal like nirvana and serenity. How could anyone ever have too much serenity?
“I don’t seem to worry as much when I get up in the morning,” my friend continued. “It makes it hard to get stuff done.” Again, my open-mouthed stare. A troublesome lack of worry sounded frankly absurd to me, and I found it hard not to laugh.
I knew that my friend was not chronically depressed. He didn’t have bipolar disorder or social phobia or panic attacks, or any other psychiatric diagnosis that I could put my finger on. What he had was a spate of nasty luck—a series of stressful experiences that had made his life harder than normal and dampened his usual high spirits. He told his primary care doctor about this, and she had whipped out her prescription pad and prescribed the antidepressant. No recommendation or referral to talk therapy, or cognitive behavioral therapy, or even a local support group. Just sleight-of-hand psychiatry—a little bit of magic to balance on the tip of the tongue. A subtle dose of mellow.
I can hear the anger bubbling up behind my words, but I can’t help it. It upsets me when psychotropic medications are casually prescribed for situational depression (as opposed to major depression or bipolar disorder). Antidepressants are supposed to address a chemical imbalance in the brain, not just appease a patient who’s having a bad month or two. In my opinion, my friend could have benefited immensely from a short round of therapy. And who knows? He might have learned coping skills that would not only help him through his current situation, but serve him in good stead for the rest of his life.
Overprescribing psychiatric meds doesn’t just hurt the patient who lacks a viable diagnosis. It makes it worse for the rest of us who really, truly need these drugs to function. Skyrocketing demand naturally drives up the cost, which is already shockingly prohibitive. (Just one—one—of my medications is over $5,000 per month without insurance. And that’s no typo.) The drug companies can blithely charge what they like, knowing that every day patients are going to walk into the doctor’s office seeking that latest miracle pill they saw on TV, the one that made the sad girl smile.
My friend, like so many other people these days, doesn’t have an ongoing relationship with his doctor. He sees her intermittently—there’s no real oversight or follow-up. So when I asked him what his doctor had said about how to go off his antidepressant, he looked at me blankly. “I’m just going to stop taking it,” he said, at which point I had to get up and walk around the room to release the steam building up between my ears. It’s essential to carefully titrate down with an antidepressant, or you risk severe withdrawal. I’ve been through it, and it’s hell. My friend didn’t know this because his doctor hadn’t told him.
I explained about the need to go off the drug slowly. My friend wasn’t convinced, or maybe he was just too mellow to appreciate the seriousness of the situation. “You’re making way too big a deal out of this,” he said. That’s exactly the problem, and that’s why I’m so bothered. Drugs are a big deal, they’re a very big deal, and it’s time that we all recognize this—doctors and patients alike. Antidepressants aren’t mind candy.
What bothers me most about overprescribing is that it cheapens the experience. Taking psychiatric medication ought to be a solemn thing. Those side effects spelled out in the Physicians’ Desk Reference and splattered all over Google aren’t there simply for shock value. You shouldn’t be ready to pop a pill just because your wife’s cousin did, or you heard an enticing thirty-second sound bite. The decision to take these meds should be entered into wisely and with reverence: because believe me, it’s a sober contract.
BLISS OR LITHIUM?
This past spring, the urge to feel splendid disturbed my sleep: the desire to travel, to see fresh sights, to live a vivid new life without any constraints. I blamed it on the jacaranda trees. Whenever the jacarandas burst into bloom, I feel like I should be blooming, too. Which would be fine, except for one thing: when you have bipolar disorder, full bloom often means full-blown mania, and not even for the siren call of spring was I willing to take that path.
Still, I eyed my lithium warily each night. What would happen if I only took half the dose? The idea was enticing, although I knew that lithium was my friend. But some friends are, frankly, a drag. Lithium helps me stay sane, but it also tamps me down. My creativity suffers, exuberance flees, and I experience a certain degree of cognitive dulling—not unbearable, but by no means pleasant, either. And pleasure was all I was after.
Joy! The whole world seemed steeped in it, from the crabgrass run riot in my neighbor’s yard, to the Easter lilies that sprang up from nowhere on my hill, to the songbirds that trilled all the way through dusk. I noticed these things but I didn’t inhabit them, not the way I would if I were manic. Perhaps if my blood weren’t so diluted by lithium, I thought, it would sing in sympathy with the birds. My heart would open with the lilies. I’d stare at a solitary stalk of crabgrass until I knew the oneness of many things.
How I longed for my old intensity, even though it wasn’t always limited to pleasure. Pain is more difficult to remember, but I knew that it was out there, too, watching me with eager eyes. Lithium may be a barrier to joy, but the numbness does help keep desperation at bay. The trade-off was worth it, or so I kept on telling myself as I stared at the oblong pink capsules in my hand. “It’s worth it,” I whispered furiously each night, before reluctantly taking the pills.
And yet, I became intensely envious whenever a young woman in my writing group described her latest romantic adventures. She was in ecstasy, she was in agony, she was so tormented by her flood of feelings that she wept every single time she read. I wondered if my writing would take such flights if I weren’t so tethered to sanity. What images would enchant my imagination, what words would flutter off my tongue… And far more interesting: what would my own love life be like, if I dared to set it free?
They’re so tiny, those pale pink capsules. No bigger than my fingernail. And yet how heavily they weighed in my hand. Was it really worth it, after all?
I was debating this again one night when my phone rang. It was my best friend, distraught and sobbing. I gradually pieced her story together: Her daughter had attempted suicide and had just been admitted to a psych ward. What should she do? I gave her what comfort I could, but when I hung up the phone I felt a surge of relief. Thank God, this time it wasn’t me. It wasn’t my mother having to make those anguished phone calls late at night. Please, can you help me? Please, can you help her? I was here, safe at home, pills in hand. That’s when I realized that true joy isn’t a flood of bliss. It is, quite simply, a lack of drama. Gratefully, I swallowed my lithium, yet another night.
In a strange stroke of serendipity, the next day I stumbled across a quote from Epicurus (341–270 BC): “Pleasure is the absence of pain in the body and of trouble in the soul.” The fact that this was ancient wisdom made me feel even more secure in my epiphany. Pleasure may be heightened intensity for some, but for me real pleasure lies in absence: the absence of too much emotion, too much awareness, too much sensation. Too much tumult, even if the tumult sometimes feels like delight.
THERAPY
“Education never ends, Watson. It is a series of lessons, with the greatest for the last.”
—Arthur Conan Doyle (1859–1930), His Last Bow
It’s generally accepted that the most effective treatment for mental illness across the spectrum is a mix of some form of therapy and medication. This is particularly true for major depression. In a large study reported in the New England Journal of Medicin
e, chronically depressed adults given both medication and cognitive behavioral therapy had vastly improved results: “The combination of the two was whoppingly more effective than either one alone,” said one of the researchers. “People suffering from [mental illness] often have longstanding interpersonal difficulties, and the virtue of combined treatment in this case may be that it simultaneously targets both symptoms and social functioning.”
Simply put, therapy sometimes reaches places where medication can’t. As the chief of staff at the Menninger Clinic observed, “Mental illnesses are complicated. Medications can do part of the job, but the rest must be done by a careful partnership between [therapist] and patient, a thoughtfully crafted treatment plan that includes psychotherapy and/or high-quality psychosocial interventions. It’s respect, compassion, genuine interest, and professional expertise that [therapists] must bring to the patient, to form a therapeutic relationship.”
Medications alone can’t deliver that all-important personal touch. Critical as they are to a successful treatment plan, their benefits may end when you stop taking them. The benefits of therapy, however, endure. That makes it a good investment, according to Forbes magazine: “The positive gains continue and grow over time, as some of the work gets further consolidated after therapy stops.”
For those who prefer hard science over warm and fuzzy benefits, consider this: Like medication, therapy can rewire the brain. Imaging studies have shown that psychotherapy can alter activity in the medial prefrontal cortex, the anterior cingulate cortex, the hippocampus, and the amygdala—regions involved in executive control, emotion, and fear. It’s true, therapy may not be a quick fix or a magic bullet. But a pill can’t tell you it cares if you’re alive.