Death Grip (37 page)

The sorry bugger: He almost spilled his drink. Think of how tragic that would be to have to start over again, to have to go buy another coffee.

*   *   *

F
or the first time in
a long time, I don't have to explain myself. The woman sitting across from me knows exactly how I feel. I've met Alison Kellagher at the Amante coffee shop, a European-style, cyclist-friendly café with tiny granite tables in a new mixed-use building along Broadway in far north Boulder. It's afternoon, bright and empty inside, a rerun of last year's Tour de France playing on a flat-screen in the corner. I drink steamed milk while Alison sips chai. The sun is streaming in, keen light bouncing off dirty snow heaped on the sidewalks. I'm still locked in hell, but at least for this hour I needn't explain its specific contours.

“You know, they thought I was bipolar at one point, too,” Alison is saying. “My moods were all over the place after I stopped benzos, let's see, the fourth time? Fifth? I kept bouncing around—high, low, high, low—and so they put me on mood stabilizers, but I didn't take them for very long.”

“Yeah, I can see why,” I say. “I'm all over the place too most days.” It's true—I'll be almost manic, rushing around in a frenzy, then feel fatigued and depressed, then flatline at neutral all in the space of an hour.

Eventually, Alison continues, her moods got better, more predictable and consistent. Alison is fifty-one, pretty, petite with the lean build of the cycling champion that she is, her blond hair piled high above bangle earrings. She lands somewhere between Boulder athlete and New Age hippie, but not in the flaky, airy, spacey way. This woman is sharp. At present she is completing her master's in counseling from the Naropa Institute, a private Buddhist university in town. Alison is four years out from taking benzos, no longer takes any meds, and has been winning her age category in cycling and cross-country-skiing events. She feels, she tells me, healthy, strong, and normal, like the Alison before benzos. She'd first started taking the pills in 1986, but before then she'd been a competitive road biker for six years, named to the national cycling team for 1983–84 and earning a bronze medal in the National Championships in 1984 in New Hampshire. At her peak, Alison rode two to three hours a day, six days a week, before retiring from competition to design cycling clothing. Like me, she even had equipment sponsors.

Alison's story is so much like my own, it's uncanny. Perhaps because of pushing so hard athletically or perhaps because of her high-pressure job, she began to have panic attacks in the mid-1980s, around the time she retired from competition. A doctor—the same doctor she would see all along—prescribed Xanax, and Alison's usage became a daily fact of life in 1986, even as she soon began “waking up in absolute terror” and having to take her first dose immediately to beat back the fear. By the time she'd shed benzos, seventeen years later, she was taking seven milligrams of Klonopin a day, all prescribed by the same physician. (Alison did her final withdrawal at detox in just weeks.) Like me in my bleary tolerance-withdrawal years, Alison came to dwell in a “weird twilight existence,” “fading away with a whisper,” a “shadow person” who disappeared from her friends and even quit riding her bicycle in 1991. As she will tell me later, “I wasn't interested in anything really. I lost interest in my career. That part of myself was just missing, that part of myself that really wanted to even do much of anything.” Alison was a shell, functioning at the bare minimum, taking the benzos solely to stave off withdrawal. She wanted to quit but was perpetually unable. Alison tried four times before it stuck, each time reinstating at the four-month mark because the symptoms were so extreme.

And because nobody told her what to expect, as she is telling me right now.

“So, you said you're having some pretty weird symptoms, right?” Alison asks.

“Yes, you could definitely say that … nutty stuff, crazy stuff like a bad acid trip. Only this one doesn't stop. Everything is distorted, like a kind of waking nightmare or…”

Her eyes light up: “Yes, exactly! You just described it so perfectly. It
is
like a bad acid trip … which I know about, unfortunately.” She laughs, then says, “I remember that: Everything is distorted and scary and coming at you so quickly; nothing looks like itself or sounds like itself, even your face in the mirror or the sound of your own voice. How horrible that was … you poor, poor man.”

“Yes, like that!” I say. “Like, way overstimulating. And I can smell everything way too much, and I keep hearing sounds and, like, well, like music one room over but there's never anything there. Music and dim, kind of, voices? It's scaring the shit out of me, Alison. Some of these symptoms are almost supernatural or something. It's been positively demonic.…”

“
Ohhh
, I know what that is,” she says. “That's actually no big deal. I used to call that ‘hell music.'”

“Hell music?”

“It sounds like the music you'd hear in hell.”

“Yes, precisely!” I say.

“Are there any things around your house that make constant noise, like a TV or water pipes or a refrigerator? For me, the hell music went on for months,” Alison says, “until I found the source.”

“It did?” I ask.

“Yeah. I'd hear it every morning when I was home alone, and it scared me senseless until I realized it was just sprinklers in the park behind our house.”

Sprinklers …

“Oh, wow, you know something, Alison?” I ask. “We live in this old rental, and the refrigerator buzzes and vibrates like crazy when it kicks on…”

“Aha!”

“It must be then that I hear the music … Holy shit, it's all right there in front of me: hell music. My brain is hearing the refrigerator and turning it into something else. I guess I'm not going crazy after all.”

“No, you absolutely are not.”

We talk symptoms for another hour, and Alison says that she's felt every last thing I'm describing. Each time I hear her confirmation, I relax a little more. In Alison's opinion I'm very strong to have come this far. She says that many people in my situation simply give up and go back on the pills—and adds that if she were me she'd consider staying the course because reinstating probably won't help at this juncture. I'm too far along into the cold turkey. The damage has been done. Finally I ask, when will I get better?

“Well … my sense is that if you can get through these first few months,” Alison says, “you'll start to notice milestones, with certain symptoms dropping away at three months, then six months. Then more at a year, then feeling pretty good at a year and a half. Most of the benzo people I've talked to recall noticeable milestones of wellness around these markers. Eighteen months is a pretty standard timeframe for healing.”

Eighteen months: It sounds like an eternity, but then Alison reminds me that I won't feel this
particular way
the entire time. Each month will elevate the floor such that the very worst days one year from now will be better than the best days at present. She says that I might not be symptom free in a year or even eighteen months, but that I might feel well enough to no longer be symptom-
focused.
I also ask Alison what she knows about protracted withdrawal. Alison again urges me not to worry too much about labels or timeframes, but to just believe that I will get better given time. Time: It's every recovering benzohead's worst enemy but also his primary ally. Never have I seen time, which I wanted to fly by, instead creep by so slowly—to protract, as it were.

In her paper “Protracted Withdrawal from Benzodiazepines: The Post-Withdrawal Syndrome,” Dr. Heather Ashton defines protracted withdrawal in medical terms. It is, she writes, a “post-withdrawal syndrome, which may linger for months or even years” and affects 10 to 15 percent of chronic benzo users.
1
Dr. Ashton suggests two possible root causes: the slow reversal of receptor changes in the brain, and the exposure of poor stress-coping abilities and other personal difficulties previously masked by benzos. (In other words, if you never learned to control panic attacks without benzos, a bad withdrawal will only highlight that shortcoming.) Going off cold turkey can also put you at greater risk for protracted withdrawal, by essentially shocking down-regulated GABA receptor sites. However, there's so much variance in individual tolerance and history (some fortunate souls do seem to come off quickly or without trouble) that it's often difficult to pinpoint where a long, painful but “normal” withdrawal ends and a protracted one begins. In other words, there's no clear, objective measure of the point at which withdrawal becomes protracted. For myself, seven years out with recurrent (but background) difficulties breathing, I certainly qualify as protracted, though I no longer have panic anxiety. In any case, I don't think of myself as still in withdrawal, having resumed 90 percent of my normal activities.

On the purely pharmacological level, the acute withdrawal syndrome, writes Ashton, is “classically described as lasting five to twenty-eight days, with a peak in severity around two weeks post-withdrawal”—the two weeks of “flu-like symptoms” and “slightly elevated anxiety” that the Hopkins doctors warned about. But Ashton argues that even this time period has probably been underestimated, as most clinical studies end after one or two months, after which ongoing symptoms are no longer monitored. (And these studies can fail to account for dropouts, who often leave to resume taking benzodiazepines possibly because of strong symptoms.) “Indeed,” writes Ashton, “persistence of high anxiety levels beyond twenty-eight days post-withdrawal is usually interpreted not as a withdrawal effect, but as a reemergence of an underlying anxiety state previously controlled by the benzodiazepine.”
2
Voila! What happened to me!
In America, this bit of misinformation—the so-called “underlying panic disorder” Dr. Porridge cited even as I was in the throes of acute withdrawal—is the most commonly accepted version of the truth and is certainly responsible for keeping untold thousands in the benzo trap. Patients are told that it's them, not the chemicals, and they lose all hope. They go back on the pills and keep chasing diagnoses, or they succumb to the darkness. On the Yahoo group I will join, a tale will circulate about the brother of one moderator who, taken cold turkey off Restoril (a benzo sleeping pill) at detox and given the party line about a brief, uncomfortable post-withdrawal period, subsequently came home and shot himself dead.

You can find plenty of horror stories like this on the Web and in benzo forums—about nightmare withdrawals, protracted symptoms, and even rumors of brain damage (what Dr. Ashton has called “equivocal evidence” of cortical atrophy and neurological impairment, perhaps reversible upon cessation). But for anyone in the acute phase I would urge that you not dwell on such tales, for four reasons: First, you don't want to imprint negativity or fearful thoughts onto your extremely delicate psyche. Second, you don't know what will happen—everyone heals in a different way and at a different rate. Third, it is often difficult to distinguish where protracted symptoms end and a person not facing the underlying issues—depression, isolation, lack of purpose, buried trauma, or other psych-med use or substance abuse—begins. And fourth, you do not want to enter withdrawal with the idée fixe that this is the worst thing ever and that you will never be the same again, because it will become a self-fulfilling prophecy; by fearing the fear, you only increase its influence. As Ashton will state in a phone interview with me, withdrawal need not be a horror, even if that was my experience of it. If you go slowly, letting yourself learn, relearn, or put in place anxiety-coping mechanisms as your dose declines and GABA receptors up-regulate, you can mitigate your fear. It also helps, Ashton has written, if the patient dictates the rate of taper, ideally on an outpatient basis within the structure of his or her life—in other words, away from hospitals and the culture of illness, and with some sense of personal destiny and control. The problem, of course, in America is that there are scant few places that offer a slow (months, not weeks), supervised withdrawal on either an outpatient or an inpatient basis—the infrastructure is lacking. Sure, a detox center can get you off in days but they might also hook you on barbiturates or antiepileptics on your way off; either way, they've sown further addiction and possible years of protracted symptoms. That American need for a quick fix—the same one that drives us to seek pharmaceutical crutches in the first place—can, paradoxically, land you in a unending maelstrom.

“[There's all this] media hype, especially in America, that benzos are terrible, that you can't go off them without going through terrible hell,” Ashton will tell me. “That's true for some people, but holds mainly for people in these detox centers.” Ashton posits that the syndrome has been “terribly hyped up by the media and those who go to the benzo groups,” which by their nature attract those who have the very worst withdrawals and thus can't be seen to represent the entire population. “Most people get off well and quietly, so they're not going to need to visit those groups,” she'll tell me. Now consider that benzos are most commonly prescribed for anxiety. To Ashton's mind, anxiety sufferers tend to subjectively experience the worst withdrawals because of their proclivity toward fear. “Benzos are most efficient in their actions, especially if you're anxious to start with,” she'll say. “People who are anxious love them … Then people get all these messages that it's going to be hell to get off, and the fear compounds.” (On the flip side, I have corresponded with a few people who, prescribed benzodiazepines for problems like sleep disorders or muscle spasms, developed anxiety issues during withdrawal that they'd never experienced before.) Alison Kellagher will later bring up her own complementary theory: that while not all who taper get the withdrawal syndrome, a certain percentage might unknowingly do so but end up misdiagnosed and placed on further meds, “staying in the psych-med world” forever, as I nearly did. Or they might reinstate because the fear and symptoms are intolerable, as Alison did. In either case, they drop back into the Psychiatric Death Machine, becoming statistical ciphers.