Dr Sacks’ classic tale of Witty Ticcy Ray finds an echo in bipolar disorder.
by JP Sutherland
“I hate to complain,” said Jennifer, “because I know that valproate has been good for me. But I can’t help missing the highs that I used to have.”
‘Uh-oh,’ I thought, immediately picturing her appearing in the emergency room accompanied by police, and then being so irritably disinhibited that we had to consider an intramuscular sedative. While she might only be thinking about a change in her medication, I had watched this play out enough times to know that it often ended with non-compliance and rehospitalization. And one of my jobs was to try and prevent that.
“Tell me what you miss.” I said, suppressing my worries for the moment.
“Oh, the parties. I know I took it too far, and never went to bed all weekend, but now I feel so dull. I used to be the center of attention, and now I’m more of an onlooker.”
“You might have been the center of attention because of the manic things you were doing.” I said, thinking of the disinhibited, fast-talking, and recklessly spendthrift individual I had to hospitalize.
“I know, I know. So maybe I did go to bed, just not to sleep.” She said, with a slight chuckle. “Can’t I have a little of that back again? Normality seems so dull by comparison.”
Jennifer’s bipolar disorder was well controlled by sodium valproate. Now in her early thirties, she was an accomplished saleswoman, and her episodes of mania were looking like they might all be in the past since we had settled on what I thought was an acceptable medication for her. However, she wasn’t satisfied with the state of ‘normality’ that valproate gave her. She described feeling slow and inhibited, even though I could see no objective evidence of this. Our medications can sometimes slow an individual’s thoughts and actions, but I also know that many patients who have experienced the highs of a bipolar illness can find normality sluggish by comparison, even though they aren’t actually slowed. I tried suggesting this to Jennifer, but she wouldn’t have it. We therefore started a dance of changing medications from one to another in the hope that we would find one that would be more satisfactory and freer from perceived side effects. And as often happens, there wasn’t a wholly good solution.
So maybe I did go to bed, just not to sleep.” She said, with a slight chuckle. “Can’t I have a little of that back again?
Of all the physicians who have written medical memoirs based on case histories, it is Oliver Sacks who I admire most, notwithstanding his recently uncovered failure to acknowledge where he embellished his patients’ stories. I have read and enjoyed Henry Marsh, Jillian Horton, Julie Holland, David Goldbloom, Atul Gawande and many others, always learning something from them. But it is Sacks who is the grandfather of the modern genre, and his book The Man who Mistook his Wife for a Hat remains my guide to interweaving clinical detail and human perspective, while always keeping a respectful tone towards the patients whose story he is retelling.
I first came across his work during my residency. As well as becoming specialists in our own field, psychiatrists are supposed to have a generalist’s level of competence in all other areas of medicine, and especially neurology, which was Sacks’ field. Psychiatry and neurology are close cousins in the medical family. Neurologists’ work is concerned with the hardware of the computer-like brain, whose malfunctioning leads to problems in motor function and sensation, while I work with the less tangible software that produces emotional states and perceptual disturbances. I dutifully attempted to read a textbook or two on neurology, but as my yawning became more and more of an issue, I let those heavy tomes slip from my hands, and repeatedly picked up Sacks’ light paperback instead. There I found lots of neurological diagnoses, but now they were set out as fascinating case histories, with the educational material deftly braided with the human story. As a result, I likely became less expert in neurology than I should, but the foundation for my writing was set, and I like to think that Sacks’ humane approach also made me a better doctor.
“Aripiprazole isn’t any use,” said Jennifer at our next meeting, “it makes me restless. I know I was wanting to be more lively, but this is unpleasant, and I feel I can’t sit still.”
“I’m sorry,” I answered, noting her feet shuffling even as she sat opposite me. “You have been unlucky with all the different medications you’ve tried. What you’re describing is a side effect that can happen with this drug, though most people don’t get it. You should certainly stop the aripiprazole.”
“So now what?”
“You know, I think that valproate was the best medication for you. I understand that you didn’t like it, but I couldn’t detect any side effects.”
“But it stopped me from feeling high.”
“You say that like it’s a bad thing, and I understand that’s how you feel. But the highs were also what got you into trouble, even being hospitalized.”
“I know, I know. But I only want a little of the highs back again. Can’t I take a reduced dose?”
“That’s not a good idea. I see what you’re thinking, but the risk is that a lower dose would let your bipolar illness break through again, and you’d end up with a manic episode.”
“But then I’d just restart the medication.”
“Unfortunately, once an episode gets going it tends to keep going for the usual month or two. You might end up hospitalized again.”
“So, what else have you got to offer?”
“There’s still some of the antipsychotic medications that you haven’t tried.”
“But both risperidone and aripiprazole were that kind, weren’t they? I don’t want anything like them. I’ll go back on valproate, but start to reduce the dose.”
“Jennifer, I can’t mandate what you do, after all it’s your life. But I really recommend against it.”
“I hear you,” she said with a smile, and gathered her things to leave, “but I’m in charge now.”
And with that she was gone, leaving me to fear what came next, and whether I would even see her again in my office, or just back in the ER with an unwanted police escort.
But at the weekends he became wildly non-compliant, so his tics returned, and with them came his former eloquence with his drumsticks.
In Witty Ticcy Ray, one of my favourite case histories by Oliver Sacks, he describes his treatment of a man with Tourette’s syndrome. Tourette’s is a disorder characterized by tics (which are unwanted jerky movements), and coprolalia which is the shouting of unwanted obscene words (such as suddenly and uncontrollably saying ‘shit’). Fortunately, it’s quite a treatable disease and its treatment uses medications that psychiatrists know well, such as haloperidol.
Ray had spent years untreated before coming to see Dr Sacks, and had learned to use his tics as inspiration for his hobby of drumming. His technique was to convert the sudden unwanted movements into unusual improvisations that made a name for him in his local jazz community. However, Tourette’s syndrome was very wearing on the rest of his life, and so he finally sought treatment. Haloperidol brought his tics under control well, but the first dosage slowed him too much. He returned to Sacks’ office with a black eye from failing to dart nimbly through a revolving door, and promptly discontinued the treatment. His bruises faded quickly, but he was left with a bigger worry. Having lived for decades with Tourette’s he felt lost as a man without the tics that were so much a part of his character.
“Suppose you could take away the tics,” he said, “there’d be nothing left.”
This prompted three months during which Ray and his doctor met repeatedly to address his existential concerns. Only then, after what appears to me to be an impressive example of psychotherapy (especially from a neurologist!), did Ray agree to a second trial of the drug.
This time things went better. His tics subsided once more, and either he was less slowed this time, or he had learned to adapt to his new non-Touretting body. He then proceeded to hold a steady job, having been repeatedly fired in the past, and his marriage also stabilized. But he wasn’t wholly happy with this new ‘normal’ life, despite the adjustment in his expectations resulting from his therapy with Sacks. And of all the things he didn’t like about life without his tics, it was his drumming that pained him most. Having previously been the unconventional star with his tic-inspired variations, he now felt himself to be a dull and average musician. This led him, and Sacks, into their most unusual next step.
Recognizing the benefits that haloperidol brought him, Ray continued to take it dutifully during the working week, allowing him to remain steady at work. But at the weekends he became wildly non-compliant, so his tics returned, and with them came his former eloquence with his drumsticks. Then having had a speeded, ticcing, and inspired couple of days, he duly restarted his pills and became the sober citizen that Monday morning required.
To me this wonderfully encapsulated the dilemma of how far into someone’s life a physician should intrude, and I loved the compromise that Ray forced on his doctor, as well as appreciating how the physician accepted the individual’s needs. I returned to the story repeatedly, and recommended it to all my students, but it was so unusual that I thought I would never be called on to do anything similar. But of course, I hadn’t yet met Jennifer. And when I did, I found that I didn’t like the issue half as much in reality as I did reading about it in a book with someone else’s patient.
Jennifer did return to see me as planned at her next appointment, and I was relieved enough to see her that I said so.
“What? You thought I wasn’t coming back? Don’t be silly, someone has to prescribe the valproate. I still need a supply. And if it goes wrong then you’ll have to pull me out of it again.”
“I’m glad to hear you recognize a risk. Is there any sign of mania yet?”
“No. But I only stopped the pills for one weekend.”
“Stopped them? I thought you were going to cut them down.”
“Yes, I started like that, but it didn’t make any difference. So, this last weekend I went without.”
“And..?”
“It was good. I went to a couple of parties and enjoyed myself. It was a little bit like the old days. Why are you looking at me like that?”
“Sorry,” I said, trying to recompose myself into a more professional stance. “I was just looking to see if I could see any sign of relapse.”
“Do you?”
“Not so far. You look happy enough, but not excessively. Can we go through all the symptoms?”
“Sure. I know you always ask about sleep. I only got two or three hours at the weekend, and that’s all I needed, but it’s better again now.”
“That’s a worry for me. Once an episode of mania gets going then we might not be able to rein it in so easily, and poor sleep is usually the first sign.”
“I know. But I’m OK. What are the other symptoms you look for?”
And so we proceeded through the litany of DSM criteria, with me noticing no change in her speech or thought pattern, no distractibility, and nothing grandiose.
“How about your behavior at the weekend? Can I ask if there’s anything you did that you might regret? Spending money excessively is one example.”
“And another one is sex. I remember. And no, nothing I regret.”
“Well, I don’t see any sign of trouble right now. But I do worry that you’ll relapse sooner or later if you keep this up.”
“I know. I’ll be careful. But I’m pleased with it this far.”
Once Ray had settled into his routine of conforming weekdays and wild weekends, he reflected on his situation.
‘Having Tourette’s is wild, like being drunk all the while,’ he told Dr Sacks. ‘Being on haldol is dull, makes one square and sober, and neither state is really free… you ‘normals’, who have the right transmitters in the right places at the right times in your brains, have all feeling, all styles, available all the time – gravity, levity, whatever is appropriate. We Touretters don’t: we are forced into levity by our Tourette’s and forced into gravity when we take haldol. You are free, you have a natural balance: we must make the best of an artificial balance.’
When I returned to Ray’s story for the first time after treating Jennifer, this passage jumped out at me. If I replaced ‘Tourette’s’ with ‘bipolar disorder’, or ‘mania’, then surely Ray might have been describing Jennifer’s predicament, or that of anyone with a bipolar disorder, as much as his own struggles with Tourette’s. She felt her medicated self to be as equally dull as Ray’s, even though to an outside onlooker she appeared wholly normal. She craved her manic state, or at least some elements of it, as much as Ray missed the unmedicated freedom that haloperidol had denied him. And when manic I’m sure Jennifer would also describe being ‘forced into levity’.
Personally, I don’t think that any of us is truly free, in the way that Ray suggested that we ‘normals’ are. I, for instance, am bound by my introversion. I’m quite content with it, but it does prevent me from ever being the center of attention, or the life and soul of any party. However, the perspective of someone like Ray whose life is limited by a major disorder reminds me of the relative freedom I do have, compared to most of my patients.
“You’re looking older, Dr Sutherland,” said Jennifer. “I see more grey hairs.”
“Uh-oh,” I thought. Making unflattering personal comments about one’s doctor is still relatively unusual, and a psychiatrist’s ears will immediately pick it up and suspect mania. During a manic episode, people who suffer from a bipolar disorder often become disinhibited. This shows in the overspending and promiscuity that Jennifer and I had previously discussed, but it is also evident in simple conversation, in the way she had just demonstrated.
“Well, I guess neither of us is getting any younger.” I replied. “We’ve been meeting now for how long?” I flipped back through her chart to see. “Almost five years now.”
She made a face.
“It feels like longer.”
“I know. How are you doing. Any sign of mania?”
“Just the usual. Though last week I actually stopped my meds for five days. It was great!”
Now it was my turn to grimace.
“That’s so risky, Jennifer. I know you’ve managed to avoid a relapse for a long while now, but the longer you go unmedicated, the more you risk a full-blown manic episode and hospitalization. I thought you were just stopping for a couple of days at a time.”
“I know. And I agree it was too much last week. I didn’t notice it myself, but finally two different groups of friends called me on it, and said I was being weird. My friend Sally knows about my bipolar, and pretty much ordered me back on my pills.”
“Thank you, Sally.” I said out loud. “How bad had it got?”
“Oh, mostly the usual things. Not much sleep, and lots of parties. But everyone said that I was talking so much that I was being annoying. That’s when I realized I’d gone too far.”
“And how much better are you now?” I asked, noting that her speech seemed to have retreated back to a normal speed and volume, from the symptom we call ‘pressure of speech’ that her friends had likely noticed in the previous week.
“Pretty good.” She smiled. “I think I’ll just stick to skipping medication at the weekend.”
“That’s just what Ray did in that book I lent you last year. Did you ever read it?”
She shook her head.
“I tried. But he didn’t have a bipolar illness which meant I couldn’t relate to it. And anyway, I don’t have time to read books, there’s so many better things to do.”
As for the question of whether her weekend mini-manias are truly her or a mental illness, we will never agree. And at the end of the day, who amongst us can truly say.
In the final paragraphs of Witty Ticcy Ray, Sacks notes that Ray had been stable in his pattern of weekend Touretting and weekday normality for three years. As I write this, I can report that Jennifer has maintained her pattern of intermittent non-compliance for seven years, and during that time has never been readmitted to hospital. I almost wrote that she ‘has remained well’, which shows how much I have adapted to her situation. But the truth is that I think she is far from well at times. An abnormally elevated mood, a marked reduction in her need for sleep, and a level of disinhibition that sees her party like a teenager – these are all symptoms of her underlying bipolar illness. But although a psychiatrist labels them as symptoms, Jennifer herself would disagree. She would call them signs of her true self, the one that she feels is inhibited by her medication.
It is a fine line that she walks, repeatedly veering towards a full-blown episode of illness, yet always pulling herself back from the brink with a reinstatement of her medication. I continue to advise her against this pattern of weekend non-compliance, and I still fear that one day she will fully relapse for months. But now I know that she won’t heed my advice, and part of me acknowledges that I am just saying it to cover myself professionally.
As for the question of whether her weekend mini-manias are truly her or a mental illness, we will never agree. And at the end of the day, who amongst us can truly say.
All names and other identifying details have been changed to protect patient confidentiality.
The quotes from Witty Ticcy Ray are taken from The Man who Mistook his Wife for a Hat by Oliver Sacks, published by Vintage/Penguin.
JP Sutherland 