Second of two parts
Do you have current reasons for living?"
"I hope I'll get better. You can't get better if you're not alive ..."
"Do you have doubts things are going to improve?"
"Do you believe your doctor when he says you'll get better?"
"My doctor wouldn't dare tell me that."
In a small windowless office in Baltimore's VA Medical Center, study coordinator Aaron Jacoby took notes on the state of Laura Riley's emotional well-being. The 28-year-old doctoral student, with his Palm Pilot efficiency, and the 46-year-old veterinarian, with her faded jeans and penchant for irony, were determined but awkward partners in a scientific duet. Week after week, they worked from the same set of questions. Week after week, they labored to determine whether the patient was getting better.
It was July 2001. Laura Riley suffered from bipolar disorder, a deadly mental illness that had caused her to give up her veterinary practice in large animal medicine the year before. Now she was trying extreme therapy: A pocket-watch-sized generator, surgically implanted in the upper left side of her chest, was sending regular stimulation to the part of her brain controlling mood. Dubbed the "brain pacemaker," the vagus nerve stimulator was being studied in clinical trials. Researchers hoped it would help stabilize the moods of patients for whom other treatments had not worked.
Laura's illness first appeared in 1997 after she stopped drinking. In the four years since her diagnosis, she had tried more than 30 medications and a course of electroconvulsive therapy. She had spent more than 100 days in psychiatric hospitals fighting suicidal depression.
Any improvement in her condition seemed worth the risk of serving as a medical guinea pig.
While all study participants were implanted with vagus nerve stimulators, only certain devices were activated during the acute phase of the trial. Jacoby did not know whether Laura was among the participants whose vagus nerve stimulators had been "turned on." Officially, Laura did not know, either. But a strange new sensation coursing through her throat eliminated any doubt. Every few minutes, when the device went off, Laura felt electrical impulses roll up her neck like a "million little air bubbles." They prickled, made her feel like coughing. It didn't hurt, but it wasn't pleasant. She supposed it felt like those buzzers people use for surprise handshakes.
The stimulator also made her voice quiver periodically, like a bad connection on a telephone. Before the interviews with Jacoby, protocol required Laura's device to be turned "off" by another researcher to eliminate any tell-tale signs that might bias the study. After the questions, she would be switched "on" again.
Laura realized having the device in her body was a crap shoot. It was like tinkering around under the hood of a car, trying to pull the right wire or bang the right component, until the engine started. Were the charges frequent enough? Did they last long enough? Were they too strong? No one knew. It was possible that the stimulator could even make her illness worse.
Once again, she was navigating uncharted waters. But this time the season was on her side; unlike the short, dark days of winter, summer was usually kind.
Laura began each research session tackling a lengthy list of questions ranging from the banal to the painfully personal. Clipboard on her lap, she checked off little boxes that described the severity of her aches and pains, her sad feelings and panic symptoms, her irritability and hopefulness during the previous seven days. Did she wake up too early? Sleep too late? Eat too much? Too little? How well could she concentrate, make decisions? She pondered her vision of the future and her ability to feel pleasure. She tried to remember how frequently she had thought about death, about suicide, about sex.
In their interviews, Jacoby would go over similar material in greater depth. The questionnaire he used, the Hamilton Depression Rating Scale, was developed in 1960 by British psychiatrist Max Hamilton. It was still considered a "gold standard" for assessing subtle mood changes in depression trials.
Laura couldn't remember some things, like how many times she sighed each day. And there were other topics -- like how often she thought about suicide -- that she didn't want to discuss. It was hard enough to talk about those things with her psychiatrist, Mark Crandall, who knew her intimately. Here, she was a color-coded binder in a clinical community of individuals known to posterity only by their numbers.
When she could, Laura chose to look at the bright side.
"I like what you said about the test shining a light on my illness," she told Jacoby during one session.
"It can feel traumatizing," he agreed. "You have to face it and think. Part of the sacrifice of the study is that you have to put up with those questions."
And so they continued to probe her mental well-being.
"Have you felt self-critical?"
"Let yourself or other people down?"
"I have another friend who is sick. I was asked to step up to the plate and I basically said, 'I don't have it to give.' "
"How much time do you spend ruminating about this each day?"
"Mmmm, four minutes. I'm not trying to be sassy, but I wouldn't say I was ruminating."
"Have you felt like you're being punished in some way?"
"Have you heard voices or seen visions?"
"Did you have thoughts of hurting or killing yourself?"
She nodded. "Hurting myself."
"Cutting myself ..."
"Cutting yourself for what reason?"
"It makes the intangible tangible. You can see it."
Outside the office, Laura's life was up and down. She was depressed some days, animated on others. There were still times when she heard ringing in her head and felt the breath of what she called "the black dog" of mental illness. At those moments she called Dr. Crandall. She also remained mindful of the words of her sponsor at her alcoholism recovery group: Keep your eye on the goal and never pause to look at the spot where you fell.
In general, her mood remained stable enough to allow her to attend more meetings of her 12-step program, an important source of support and perspective. She assisted newly sober members. And she soldiered through Social Security's clerk-filled bureaucracy in pursuit of disability benefits.
As she tried to push forward, though, her sessions at the VA Medical Center reminded her of how different she still was, particularly from the person she used to be. Her voice would get softer and softer as she answered certain questions.
"In the past week, have you had thoughts that life is not worth living?"
"Did you wish that you were dead?"
"Did you have thoughts in which you imagined yourself dead?"
"Have you had thoughts of hurting yourself?"
"What did you think about?"
"I don't want to say."
"I've got to know. ... Overdose? Car crash?"
"That would be too creative. Lethal barbiturates are right there in my house ..."
"How much were you thinking about it?"
"Did you feel you were preoccupied by those thoughts?"
"But were they persistent?"
"Yes ... I thought for sure I would end up at Hopkins."
"But you didn't go down that path?"
"I did. I called the resident and got the ball rolling. But my mood started to get a little bit better so any hint that it's going in the right direction, I would prefer not to use up my days because October always finds me in [psychiatric treatment]. ... So I can't squander those days," she said, referring to her insurance coverage.
"When was the worst?"
"Friday, Saturday, Sunday, Monday ... "
"Thank you for helping me out on this," Jacoby said. "This is always a touchy subject when we talk about it, but it's important."
Later, as dictated by the interview protocol, they returned to it.
"Would you say that you had explicit plans for suicide if there were an opportunity?"
"I have a new theory on this whole thing about suicide," Laura replied. "I think it should be called murder. I think that it should be thought of as the person was murdered by their disease rather than that the person committed suicide. That's my new understanding of it. That makes more sense to me. 'Cause I really don't want to kill myself, but in some sense I don't see how I can survive this illness. That doesn't answer your question but I thought I would just enlighten you as to where I have arrived in my feelings about it."
Jacoby waited a moment before continuing.
"Would you say you have an explicit plan and if there were an opportunity you might have done it?"
"I have had an explicit plan for four years. So ..." she sighed.
"But the opportunity is always there, too. Right? You could do it at any time?"
"Sure," she sighed again.
By the end of July, Laura was convinced that the vagus nerve stimulator was working. A physician who had treated her in the hospital thought he could detect improvement. Did she feel "50 percent back to her normal self?" he asked.
The question stumped her. Who was her "normal" self? Did this person answer the phone automatically? Accept social invitations without worrying about her potential mental state? Manage life without visiting the psychiatrist twice a week?
"Life feels dangerous to me because it has been dangerous for me," she wrote. "How does one learn that the dog no longer bites?"
One step toward trust, she decided, would be getting through October without going into the hospital. For the past four years, she had spent a good part of that month wishing she were dead. Would the vagus nerve stimulator change that?
If she made it through October, maybe she could make it all the way to January. Maybe she could spend an entire year off the psychiatric floor. What would that mean? She didn't know.
By now, Laura had gotten used to her trembling voice. The frequent stimulation also made her short of breath, compromising her goal of losing weight through exercise.
However, she was accomplishing things. She had gone from being a one-task-a-day person to often managing two or three. She spoke to Hopkins students and residents about alcoholism and depression. She finished organizing material for her vet tech courses at Essex. And she experienced creative moments so sublime that she just had to believe she was meant to become a writer.
One morning she awakened filled with the music of mysterious gospel songs. She began to write, immediately, before the dream vanished, "like wisps of steam rising off of a pond." She wanted to describe what she had encountered, express gratitude for life.
"If I were from the South and I were a gospel-singing soul, I would sing Hallelujah like I meant it," she wrote. She felt so good that she dared imagine that she would one day complain, like everyone else, that life was whizzing by. She imagined telling vividly amusing stories without fretting whether they were inappropriately manic. She imagined climbing into her veterinary truck to treat a llama with indigestion.
But she couldn't shake the sensation that she was still walking on ice -- without knowing where the thin spots were. "I have forgotten what it feels like to go forth with some element of faith in the world itself," she wrote. "I have had no faith in myself for so long that I have retreated. And while on retreat, I have forgotten."
October awakened her memories.
Driving through the countryside one day, she was overwhelmed by the beauty of the yellow-orange embers of foliage. This time last year, she reminded herself, she had watched the World Series from a day room chair bolted to the floor. Was there any better way to chart progress?
"I am not especially happy, nor am I free from angst," she wrote. "The world remains particularly difficult for me to navigate. I remain a fragile sort. Responsibility weighs heavily upon me, and the littlest task is still a trial. I don't know that I will ever be whole again -- or free from the feeling that the black dog of mental illness is slavering at my heels. But I am on the outside of the locked door. ... It is true that I am better. It is undeniable -- yet somehow disappointing because unlike the snake I cannot immediately shed the skin of my past and leave it discarded somewhere behind me."
Fall also brought the end of the acute phase of the clinical trial. Dr. Crandall began adjusting her medication. It was none too soon: Laura's disorder was affected by daylight, and her equilibrium was sliding as the days grew shorter. So was her optimism. By December, she figured it was only the gift of Dr. Crandall's phototherapy light box that helped her cope at all.
And although a researcher could now adjust the intensity and frequency of her vagus nerve stimulation, Laura and Dr. Crandall did not believe the alterations were helping.
"Are you optimistic or pessimistic about your future?" Aaron Jacoby asked in one session.
She considered the question. "Is there something in between?"
Still, Laura Riley was writing. Mark Crandall watched in awe as she practiced her craft, slowly redefining her sense of purpose. Begun as a way to cope, Laura's writing had also become a way for her to help others. Sometimes the psychiatrist would listen, tears filling his eyes, as his patient read passages from her journal, and later a novel. She managed to give meaning and beauty to what seemed senseless and ugly.
Her illness had uncovered this gift. Now she was working hard to develop it in a writing course at .
In February, Laura celebrated her fifth anniversary of sobriety. And, after 18 months of calls, visits and physicians' appeals, she was approved for disability benefits.
The next news, however, was crushing. Cyberonics, developer of the vagus nerve stimulator, announced that the acute phase of the FDA trial showed no significant difference in mental well-being between the activated and placebo groups. It would consider restructuring the study and starting new clinical trials after evaluating the program's long-term data.
Meanwhile, Laura continued her follow-up visits to the VA Medical Center. The long-term statistics from an earlier study were promising: It appeared that the longer the device remained in your body, the better you did.
When she entered the study, the device had already been approved to treat depression in Canada and Europe. A swift FDA approval would have set the stage for Dr. Crandall to learn how to adjust her stimulation. As a study participant, Laura had limited control over the device. Although she could temporarily turn it off by taping a large bulky magnet to her chest, she needed to visit the VA Medical Center to have the device turned off, then return to be reactivated, if she wanted greater freedom for such activities as lecturing or exercising.
But it was also true that she remained outside the psychiatric ward. For whatever reason, Laura was better at enduring her symptoms and getting help when she needed it. Writing had yielded important insights: Dr. Crandall noticed she no longer behaved as if her illness might consume her life. Instead, she was making decisions about her future.
One was to sell her veterinary equipment. Another was to join a chorus at . One evening a week, she would tape the magnet to her chest so she could join three other altos, eight sopranos and "one poor soul struggling to sing bass."
Driving home after one rehearsal, Laura poured out her enthusiasm: "The music is so beautiful. We're singing some spirituals and stuff -- I love that. So even though my experimental brain [pacemaker] surgery study is a bust, singing is always a nice thing to do."
It was day 362. Three more, and she would celebrate one year away from the psychiatric ward.
Room 409 of the Meyer Building at Johns Hopkins Hospital looks out on Wolfe Street and the facade of the School of Public Health. All in all, a grayish view. Meyer 409 needed brightening up, and Laura had come prepared.
She softened the room's institutional complexion with a patchwork quilt a friend had made, a bright splash of 1970s pink and green. She'd also brought along her red clogs, her pillow with its flowered pillowcase, her Mark Twain reader and the rubber frog that stuck out its tongue when squeezed.
Many of the faces at Meyer were familiar. Nurses, cleaning staff, the admissions officer greeted her with the same knowing sentence: It's great to see you, sorry you're here.
It was her 13th psychiatric hospitalization, her 11th at Hopkins. It was Feb. 22, 2002: One year, two weeks and one day since her last stay.
Returning to the hospital had been an agonizing decision. Her mixed mood states -- those periods of depression poisoned with dark energy -- had begun to come steadily, about once a week. Writing, singing, friendships, vagus nerve stimulator, light box, medication, talk therapy, prayer -- nothing had prevented the thoughts that insisted that she kill herself. Laura consistently awakened at 3 a.m., thinking: Lock the dogs in the back bedroom. Call 911. Go to the basement and hang yourself.
At first, she resisted. Be tough, she told herself. You've been through this before. It will pass. Just give it time. You can do it. Increase your meds.
But as Dr. Crandall watched her energy dwindle and her spirit fade, he grew concerned. There are worse things than going to the hospital, he reminded her. They both knew how much sicker she could get without warning. There would be no such thing as a suicide "attempt."
She alerted Hopkins that she was once more at risk, activating the machinery of admissions. Now, her task was to hold herself together until her insurance was approved and a bed was found. Could she make it? Dr. Crandall saw her every day and called to check up on her.
The day before she was admitted, Laura sat in a depressed stupor on her living room couch, refusing the company of friends, barely able to deal with her dogs. That grim ringing sound filled her head. Once more, she felt paralyzed: I can't move ... I want to die ... How much longer do I have to do this?
Then her thoughts took an abrupt turn: She found herself watching an unusual bird perched outside on a branch. What is that? She wondered. A woodpecker? Could it be a pileated woodpecker? Is pileated the right word? Aren't those birds pretty rare around here? A pileated something woodpecker ... Wow!
At that moment, some safety switch deep inside Laura Riley flicked on.
OK, she told herself. OK. I am pretty happy I saw that bird. Now, how much time can I get out of this droplet, this molecule of grace? Can I milk this moment for the next five minutes? For the rest of the morning? Is it enough to get me out of the house?
The bird was another tiny life jacket that helped her reach Hopkins.
Re-entering the hospital was an ordeal. Forms, medical and security checks and interviews consumed seven hours and six vials of blood. Only then was she completely free to seek sanctuary in her room.
Closing the door was a finish line of sorts. Laura Riley had managed to rescue herself one more time. Now, no matter what kind of treachery her illness planned, she had gained the upper hand. Kind, knowledgeable people were going to take care of her.
She was safe.
This visit would be short -- five days -- and relatively easy.
Last time, a young resident had kept her company. He sat by her bedside, holding her hand. When she cried out Why won't God let me die? Why won't God let me die?, he had apologized for not being qualified to answer those kinds of questions.
Such earnestness pierced her misery: She patted his hand, managed a smile. This man wanted so much to understand what she was going through -- maybe she could help him. She couldn't teach experience to young doctors, but she could share hers. She could open their eyes to stereotypes about mental illness.
If you come away with one thing, it's that this disease is real, she would tell them. And if you can't deal with that, refer that patient to someone else because it's lethal.
This time, during morning rounds, Laura asked attending physician Frank Mondimore about the new drug he had prescribed and its side effects. Would he increase the dosage levels? What criteria would he use?
The small, charming woman created a portrait of the ideal patient: Knowledgeable about her condition, motivated to seek the best treatment, capable of making good decisions, trying very hard to get better. Still none of it could protect her.
She voiced her concern: I'm not going to get any better, am I?
The psychiatrist replied that he couldn't answer that question. He reminded her that a lot of new treatments were being developed.
Later, she scolded herself: So what did you expect him to say to a suicidally depressed patient? On the other hand, she thought, he could be right. Maybe this anti-seizure drug would do the trick until summer. With the boost of long days of sunlight, she'd be OK until October -- when she might have a longer view.
For now, though, she would try to focus on what her illness had revealed to her, a new calling in teaching and writing. Perhaps in speaking out, in finding the words to tell her story, she could keep the black dog at bay.