A Flicker of Hope

It’s interesting what catches our attention when we surf the apps on our smartphones nowadays. Some of the more provocative articles have dubious sources, of course, but with a little digging the original study can often be found and the claims checked. The problem, however, is that even these results need to be reproducible in case either the methodology or the results were unreliable –and also the conclusions drawn from them. That’s why it’s often unwise to believe everything you see reported –or, on the other side, to report everything you want to believe… Fear and Hope are wonderful incentives, and so the issues in the study need to be thoroughly researched and vetted for bias and innuendo and references to the original study need to be included.

Perhaps because I am now retired, any article about time-related changes catches my eye more easily. So I find myself particularly interested in studies that suggest progress is being made -not with respect to age itself, but more the evolving process of aging: the gerund. It was with considerable interest that I read the BBC news on the use of flashing light therapy for Alzheimer’s http://www.bbc.com/news/health-38220670

I also attempted to read the original paper from MIT (entitled Gamma frequency entrainment attenuates amyloid load and modifies microglia) published in the December 2016  issue, of the journal Nature should you wish to struggle though it, but I have to confess that for me, even the title was difficult…

At any rate, the article suggested that flashing light in the eyes of mice that were genetically engineered to have Alzheimer’s-type damage in their brain, ‘encouraged protective cells to gobble up the harmful proteins that accumulate in the brain in this type of dementia. The perfect rate of flashes was 40 per second – a barely perceptible flicker, four times as fast as a disco strobe.’ And ‘Build-up of beta amyloid protein is one of the earliest changes seen in the brain in Alzheimer’s disease. It clumps together to form sticky plaques and is thought to cause nerve cell death and memory loss.’ Research has focused on ways to prevent this plaque formation using drugs, but with limited success so far. If a non-invasive method like a flickering light can activate the immune system to do it by itself, so much the better. ‘The researchers say the light works by recruiting the help of resident immune cells called microglia. Microglia are scavengers. They eat and clear harmful or threatening pathogens -in this instance, beta amyloid. It is hoped that clearing beta amyloid and stopping more plaques from forming could halt Alzheimer’s and its symptoms.’ Fine with me.

I did, however, initially wonder about how bothersome the flickering would be –news reports on television usually caution their audience whenever even flash photography is found in the report, presumably because of the risk of triggering epileptic seizures. But, as the article discussed: ‘For the patient, it should be entirely painless and non-invasive “We can use a very low intensity, very ambient soft light. You can hardly see the flicker itself. The set-up is not offensive at all,” they said, stressing it should be safe and would not trigger epilepsy in people who were susceptible.’ Better and better! It’s just preliminary stuff, of course, but at least it opens up new pathways and ideas for further research.

As if even reading about the concept was in itself therapeutic, the article immediately triggered what, at first blush, would seem to be a non-sequitur memory of a patient I saw many years ago. The issue as I recall was not so much about mental aberration -although the patient herself was apparently suffering from paranoid schizophrenia- but more about her speculation on the possible effects of flickering light on mental function.

I was, I think, in my first year of residency training in the gynaecology program and was doing a rotation in one of the older teaching hospitals in the city. In those days, things were very busy on the wards and so our tasks were apportioned according to our seniority, the senior residents doing the lion’s share of new consultations, while we juniors were given those jobs that, while important, required less experience -pap smears, usually.

My senior’s name was Sara, I remember, and she decided I should be the one to go to the psychiatric ward to do a pap smear on one of their more ‘unusual patients’ as she said to tease me.

“What do you mean ‘unusual’?” I asked. Sara didn’t like to go onto that ward, for some reason, so she usually made some excuse.

She stared at me for a moment before answering, I remember. “Oh, you know, she has paranoid delusions and hallucinates, or something…” But it was clear that Sara really had no idea why our department had been asked to do the pap, nor had she any intention of doing it herself.

I was beginning to suspect this was merely another sluff. Sara fancied herself a consultant now and able to delegate things she didn’t want to do. “But if she’s paranoid and hallucinates, wouldn’t it be better if the doctor doing the pap smear was female?”

Her expression turned angry at that point, and I recall her almost attacking me with her eyes. “Oh for god’s sake, there’ll be a nurse there with you the whole time… Or maybe they said two…” she added, uncertainty softening her glare, but not her resolve to send me to that ward.

I showed up at the psychiatric area and was allowed in only after identifying myself via the phone just outside the door. Then I was led to the brightly lit nursing station, and a rather large matronly nurse handed me the chart of the woman needing the pap.

“She hasn’t had a pap smear in years,” the nurse said in a soft voice, so it couldn’t be heard in the corridor outside of the station. “And her voices told her she has cervix cancer…”

“Her voices?” I should have been more professional, but I was already feeling a bit apprehensive about being inside a locked ward. “I mean, shouldn’t we wait until she’s feeling a bit better before we…”

“We can’t seem to find any good medication for her yet,” the nurse interrupted. “The doctor thought that we could at least calm her by checking her cervix.”

Greta –I still remember her name- was already in the examination room, sitting in her gown on a little table that had a set of rickety old metal stirrups at one end. They’d apparently had to borrow everything from another ward for the job. As soon as I entered with the nurse, Greta examined me from top to bottom with suspicious eyes.

“You’re a man,” she said before we were even introduced.

The nurse, whose name I forget, walked over to Greta and held her hand. “You remember we talked about this, Greta,” she said in the same soft voice she’d used before. “And you said it was okay…”

Greta nodded, smiled and lay back to put her feet in the stirrups. “They said I should show you my cervix,” she said, the italics staring at me between her knees. “Not the one with cancer, though…  I’m supposed to keep that one hidden.”

“Her voices,” the nurse quickly whispered in my ear as I sat on a little stool they’d also borrowed for the occasion along with a light on a long, flexible metal pole. It looked as old as the stirrups.

I got the speculum and the pap smear paraphernalia ready as the nurse readied the light. The bulb kept flickering, though. I fiddled with the bulb to see if it was loose, but it seemed tight enough. And it was obviously plugged into the wall. On, off, on, off… the light was beginning to annoy me. I snapped the switch a few times, but still, it insisted on flickering. On, off, on, off…

“I’ve got a flashlight,” the nurse said, but when she turned it on, it was so weak, I knew I wouldn’t be able to see cervix high up in the vagina with it.

“Well, maybe I can do the pap smear with the flickering light,” I said and shrugged.

Suddenly Greta raised her head and stared at me again. “Sometimes the prongs don’t make good contact in the wall. Everything’s so old in this place,” she added, shaking her head. “Take the plug out and squeeze the prongs.”

By this time I had the speculum in my hand, so I nodded to the nurse to try Greta’s suggestion. Sure enough, squeezing the prongs stopped the flickering.

Greta was still staring at me through her legs. “I may be crazy, doctor, but I’m not stupid…”

I put the speculum down on the medical tray I had on my lap. I sensed Greta wanted to explain something. “It’s a signal, you know.” I didn’t think I should reply. “The light’s always trying to tell you something –sometimes it’s angry, but more often it’s just trying to help…” Her feet still in the stirrups, she raised herself onto one elbow and continued. “It gets right into the brain to help, you know. It doesn’t stay there long enough, though, and that’s why it has to keep going in and out, in and out… And each time it tries, it flickers…” Then she stopped talking for a moment and stared at the nurse with an amazed expression on her face. “That’s what the doctors should be trying –not all those horrible pills…”

Maybe that incident stands out because it was the first pap smear I’d ever done. I don’t remember the result in Greta’s case –I was near the end of my rotation in that hospital- but I do remember Sara asking me what I’d done with that patient.

“Why?” I asked, afraid Greta had accused me of doing something improper.

“The ward told me that your patient seemed much calmer after you left and she apparently kept telling everybody you’d come up with a new treatment, or something…” And then I remember Sara smiling condescendingly at me, as if to say that junior residents could never do anything of the sort.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What’s in a Word?

Alexithymia. Ever heard of it? Me neither. It sounds like one of those words you’d get in a national spelling bee when they’re trying to off you. Fortunately it has a rather pedestrian etymology: ‘a’ meaning ‘without’; ‘lexis’ –speech, or words; and ‘thymos’ – soul, or emotions. In other words: no words for feelings. Hmm… Who would have thought it was a condition? Mind you, since there’s one called anhedonia, the gloves are off.

I’m fairly certain that its shadow would never have darkened my office door, had not a patient pulled it deliberately from her purse while reaching for her phone. Pandora comes immediately to mind, but this lady’s name was Alexis – or, rather, Alexisse as she quickly corrected me- with the accent on the last syllable would you believe? She seemed innocent enough sitting in the waiting room, but in retrospect, she was more a pier in the currents of a hectic room than a middle aged lady. The usual waves of noise and confusion seemed to break over and around her with as little effect as a storm on a breakwater. Throughout the maelstrom, she maintained a smile on her face, but she later admitted to me that it was a well-practiced artifice –a mask that she would always carry with her to help her to blend in.

Her clothes certainly helped as well –a grey skirt worn just below the knees, white blouse buttoned tight around her neck, but loose at the wrist, and black shoes with just a hint of a raised heel. Her light brown hair was short and tidy and her nails long and uncoloured. An average height, she would have melted into any crowd without a trace. Indeed, she followed behind me to my office like a shadow.

I’m describing her like this in the full light of retrospect, however. We always tend to remember things in ways that make sense to us I suspect, although at the time, only the word stood out. She presented as a model patient, and was not at all upset that I was running behind time and was almost an hour late before I was able to see her. “These things happen,” she said with the same smile she’d worn through the whirlwind out front. “I carried a book with me, just in case.”

I brought up her file on the computer as she sat contentedly across the desk inspecting the art work on the walls. I’d not seen her before, but the only thing the family doctor had sent me was the result of a pap smear she’d done recently. Alexisse was a new patient for her as well, and apparently had not had a pap done for over ten years. But worse, the smear was read as showing some malignant cells.

“Did you find the pap smear results?” she suddenly asked, the smile still on her face.

I nodded and looked at her for a moment before speaking. She didn’t seem at all upset so I assumed her GP hadn’t discussed the results with her. Of course the diagnosis was unlikely to be firm until a biopsy of her cervix had been done, so perhaps she had decided to wait until I did that before discussing it with Alexisse.

“Dr. Mandel said you’d be able to confirm the diagnosis with a biopsy.”

The smile never left her face but I was drawn instead to her eyes –they were totally neutral. Cool, if anything. “What did Dr. Mandel say about the pap smear?”

Alexisse shrugged. “Well, for a start, she tried to downplay everything. She said that pap smears are only screening tests and so sometimes they are mistaken…” She stopped for a moment and stared at me with an unchanged expression. “But even when somebody goes to great lengths to paint a black paper white, you know it still ends up looking grey.” Her eyes sought mine to see if I understood.

I approached the topic carefully. “So… What do you think she was trying to tell you?”

Another shrug. “That I have cancer of the cervix.” She said it as if I had asked her about her last period.

I was speechless for a moment. There was no sign that she was upset. No tears. No tightening of her facial muscles. Just the smile –the mask. “You don’t seem very upset. Your family doctor must have done a good job of discussing it with you.”

Alexisse shook her head. “She seemed a little confused about what to say. She asked me if I had any questions, and when I didn’t, said she’d send me to see you.” She stared at me for a while and when she saw that I looked puzzled as well, sat back in her chair.

“I have alexithymia,” she said as she reached nonchalantly into her purse to turn off a phone that was ringing. I must have cocked my head, because her expression intensified. “It’s a condition that makes it difficult to feel emotions –even identify them as such. I’ve learned to put a smile on my face along with my makeup in the morning.”

I started to ask if it was a type of autism, but she saw the word forming in my mouth and waved it away. “Only half of us with the condition are autistic, if that’s what you’re going to ask…” She took a deep breath and let it out slowly. “I’m sure it’s a spectrum disorder –worse in some, less in others.” The smile appeared again. “And the next question you’re going to ask is about my name. Isn’t it a little suspicious that my name is almost the same as the condition? I mean I can almost see everybody thinking it. Go online and you’ll see the community calls its members ‘Alexes’. It’s why I’ve started pronouncing my first name differently…” She sighed briefly. “I don’t think the condition is even accepted by mainstream psychiatrists yet. It wasn’t in the DSM IV at any rate… But I have to admit I haven’t looked lately.”

“So…”

She crossed her arms and stared out the window. “I’ve always wondered about why everybody except me seemed to get excited about things. I can’t remember ever being angry, or crying at a movie. People thought I was weird.” She shifted her position on the chair. “Anyway, I looked up the etymology of Alexis –which is how my parents spelled the name- and realized it came from the Greek for ‘without speech’. It didn’t take Dr. Google very long after that to introduce me to alexithymia.

“And no, I haven’t had a formal diagnosis. Dr. Mandel asked me about that.”

I sat back slightly on my chair to get the computer screen out of the way. “Well, frankly I’m more concerned with doing a biopsy as soon as possible than with any personality disorder you might have…” I wanted her to know that the most important thing to think about at that moment was her health. I meant well, but her facial expression changed immediately. She looked almost angry –hurt, at the very least.

“Personality disorder? And that I might have?” Her whole body tensed at the perceived insult. “I think you’re being entirely too insensitive, doctor!” She shook her head slowly. “Just like my family doctor. Now you see why I don’t go to doctors very often.” She started to get up from her seat. “Your secretary can let me know when you’re going to do the biopsy,” she said, still shaking her head in disbelief. “You all seem to ignore who I am for what I have…” She fixed me with a glare that almost pinned me to my seat then left the room with a toss of her head… Anger?

She never showed up for any of the biopsy appointments despite multiple phone calls from both our office and her family doctor’s. I can only hope she sought help from someone who listened to her pleas for understanding. I don’t know whether she actually had alexithymia or some other mental issue such as schizophrenia, but it clearly seemed to interfere with her ability to process information appropriately. I’ve since learned that alexithymia is often associated with other psychiatric disorders, so perhaps she had decided to fixate on a more acceptable but obscure variation. Maybe she’d been wearing another mask -one that even she had not suspected. Or one that she found too difficult to acknowledge…

I also Googled the word and discovered that the BBC had an article on it that was dated a month or so prior to her visit: http://www.bbc.com/future/story/20150818-what-is-it-like-to-have-never-felt-an-emotion I remain open to convincing, but I keep remembering what Iago said in Shakespeare’s Othello: ‘I will wear my heart upon my sleeve for daws to peck at. I am not what I am.