#yes the [specific symptom] is distressing but i know it will end soon. the real pain is knowing it will come back. again. and again.

[otterknowbynow]

Altean Home Economics (17/?)

Goo is great, but Hunk sure would feel better if they had kitchen access, even if that does mean figuring out some extraterrestrial foreign substances and ending up with a lot more than he bargained for. Set between 2x07 "Space Mall" and 2x08 "The Blade of Marmora," stretching time a little bit.

all chapters in this tag | full work on ao3

“We don’t know who sent the signal yet,” Lisanne says for probably the third time, but Elian is pacing the center of the council chambers, not anywhere near being a reasonable person for the moment -- if he ever is, Yeskia thinks. 

“If this is some kind of prank, we’re going to have to reopen the prison chambers specifically for whoever pulled this stunt.” Elian sniffs in a way Yeskia can only interpret as haughty; she keeps from rolling her eyes, but only just. 

“Nil said it was in the medical sector,” she says tightly, trying not to give away too much. She and Elian have butt heads plenty of times over the cycles, but there’s no reason to openly antagonize him in the middle of a crisis. “I think it’s safe to assume this isn’t a prank -- someone will be back soon with more information, and we’ve sent for an engineering representative already.” 

“It’s never safe to assume,” Elian says, pausing in his pacing to fix her with a withering stare. Yeskia keeps her face pointedly neutral, though she can see Lisanne roll their eyes from their seat at the council table and lay their head in their hands. 

“Well, then it’s not safe to assume the worst, either,” Yeskia says simply, her tone light. Elian doesn’t respond to that, just returns to his pacing after giving one last sniff in her direction. Yeskia takes that as at least an admission that there’s no point in panicking or turning against their own people. In any case, she has a pretty good idea of who might have sent that signal, or at least why. She and Lenida have started showing symptoms just when Hilvra is worsening -- they’re lucky it hasn’t affected Zoric yet, but if things have gotten worse since she left the house this morning, she can’t imagine her spouses have felt there was any other option. And if anyone should be making the call in this case, of course it should be medical, though she’s not sure why they used the citizens’ array...unless…

“Zoric.” She says it aloud before she can stop herself, and even though her voice is quiet, it cuts through the silence of the council chambers perfectly clearly. 

“I’m sorry?” Elian says, stopping his pacing again, this time at the far end of the chamber. He projects his voice as if he needs to in order to be heard, loudly enough that it’s actually more difficult to parse his words. Yeskia clenches and unclenches trembling fingers in her lap; she can feel her face heating up. 

“I need to disclose something to both of you, councilors, though I feel I must emphasize that I haven’t put either of you at risk,” she says, looking vaguely toward Lisanne without making eye contact.

“At risk for the disease?” That’s Lisanne, who still sounds calm and collected. As she nods at them, Yeskia can see Elian approaching them in her peripheral vision, less calm, less collected. He stops several yards from the councilors’ table, mouth agape. 

“What do you mean you haven’t put either of us at risk? Why would that be a question?” His voice has lost its haughtiness, but gained a sharp edge that she doesn’t like any better, and his eyes are wide behind the tiny half-moon spectacles perched on his nose. 

Yeskia swallows before continuing. “Lenida tested positive for UAD -- the new sickness that’s been circulating. They’re calling it Unknown Altean Disease, but trying to use the initials as much as possible, because, well…” she trails off, lifting one slightly shaking hand to gesture in circles. 

“People won’t love that,” says Lisanne, nodding. 

“Not love it? They’ll hate it,” Elian adds, incredulous. “Can you imagine? Naming a disease after the very planet most would give anything to return to --” he cuts himself off, clapping a hand over his mouth. “-- I’m sorry,” he adds, speaking through his hand now. “You said Lenida tested positive?” 

“Yes, and I imagine the reason the citizens’ array is activated is likely because Zoric has tested positive as well.” She stops speaking, swallowing past a bit of a cough. She takes a drink from her vessel, and as she does, Lisanne continues seemingly for her. 

“...and he wouldn’t want to risk the two of them having to go activate the personnel one,” they say, frowning. “Speaking of which, we really ought to amend code on that, to allow personnel to have their respective alerts in their homes. It seems like it would have been best for us to know immediately that this alert came in a professional capacity -- assuming, of course, that you’re right, Yeskia, which I imagine you are, I mean -- you know your husband.” Yeskia nods, looking pointedly at Lisanne.  

“Updating the codes is something to handle when we’re not in the middle of a crisis, perhaps, though it’s a good point,” she says diplomatically. Lisanne looks a bit sheepish, but nods in turn. Elian sniffs, bringing the others’ attention back to see he’s apparently recovered from this bit of news, at least enough to have opinions again.

“Why didn’t you share this information immediately?” he asks, and this question at least Yeskia supposes is unavoidable. 

“Because we didn’t know enough,” she says. “They’re still working on their report, and so far we’ve had no fatalities -- it didn’t seem worth disclosing until things came to a point where we had something coherent to share and could use official channels.” 

“Or until we got into a crisis,” Lisanne says, and their jaw is set in frustration also, which Yeskia is pretty sure is unfortunately directed at her. 

“Yes, and we probably should have foreseen that, what with Hilvra’s decline.” She takes a deep breath. 

“Is there anything else you might need to disclose?” Lisanne asks, waving away the rest of what Yeskia intended to become a true apology. 

“Oh, it goes along with --” 

“-- Hold that thought, councilor,” says Elian, raising a single finger toward her as he looks at his now frantically beeping wrist communicator. “We should take this.” Yeskia darts a look at Lisanne, but they’re frowning toward Elian, their focus shifted completely, and in a split second Yeskia realizes why. Elian hasn’t once interrupted a council discussion to take a call -- Yeskia may have only been on council for a half-dozen sun cycles, but if there’s one thing Elian has, it’s a reputation for observing decorum. 

“Elian, good,” says a voice from the communicator as soon as he presses the release. Yeskia shakes her head to be sure of what she’s hearing, but that’s absolutely Zoric’s voice coming out of Elian’s wrist, and a moment later her husband’s holographic form appears, wearing a strange strip of fabric across his sickles. She frowns as Zoric continues. “Yeskia’s not picking up. Is she with you?” Elian shoots her a look of disapproval before answering.

“Yes, of course she’s here, medic.” Yeskia pulls up the sleeve of her jacket to find her communicator flashing bright red -- three missed calls, all from Zoric. She feels the heat come to her cheeks as she realizes that with the trembling in her hands she hasn’t felt the vibrations. Quietly, Yeskia takes off her wrist communicator and puts it on the council table in front of her, the better to monitor it. 

“Good, good.” Zoric sounds exhausted, and from what she can see of his holographic form from a couple meters away, he looks it as well. Yeskia feels a sharp pang in her heart -- this kind of open wilting isn’t like him, she thinks. It’s not like any of the three of them. “You all need to know that we had a fatality this morning -- the first one from UAD.” He pauses as all three councilors breathe in sharply in unison, then continues. “You also need to know that I’ve sent Renturin to set off the off-world signal -- he has both keys and it should have gone by now --” 

“-- it did,” Yeskia says, standing up and moving to stand by Elian. The communicator won’t pick her up as a hologram, but it will take her audio. “But it’s the civilian one, Zoric -- why didn’t you send him to the personnel --” 

“I did,” Zoric says slowly, and she sees his hologram face frown. “And he had Edessa with him -- from the market --” 

“Yeskia,” Lisanne’s voice cuts in, and Yeskia turns to see them nodding toward her communicator on the table, which is buzzing so frantically it’s skittering across the surface. She steps over to it quickly and picks it up, hitting the release without bothering to look at who the call is from. 

“She’s getting a call,” Elian says primly to Zoric’s tiny hologram, and Yeskia doesn’t see or hear how he responds to that, because in front of her is a hologram of a woman who’s such a fixture of the market that Yeskia feels instantly comforted, despite the frantic nature of this whole day so far. 

“Edessa,” she says warmly, holding the communicator as steady as she can so it will capture her hologram properly. “Are you with Ren? What --” 

“I’m sorry to cut you off, Councilor, but we’ve got some rather strange news -- Ren asked me to call Zoric, but he’s not answering, and we need to tell someone --” Her voice cuts off as Ren’s smaller one cuts in. 

“-- we couldn’t set off the real one, Mama, the one Papa wanted us to.” He sounds frantic, and Yeskia feels a tug at her heart, barely resisting the urge to race out of the building and across the dome to him immediately. “It wouldn’t open; I don’t know why -- so we did the other one, the citizen one? The one you said I should only touch in an emergency, but Papa seemed clear that this was an emergency, so --” 

“-- You did the right thing, Ren bird, you did,” she says as comfortingly as she can, trying to keep her face clear of her own distress, her free hand trembling more than it has been all morning to compensate. “Don’t worry -- we’re figuring out how to respond now, all right?” 

“All right, Mama,” he says, and there’s some relief in his voice, at least. She can see the hologram of Edessa move her arm to hold a bag out of frame, and she’s filled with a swell of affection for the baker for whatever comforts that bag might hold. When Ren speaks again, his mouth is clearly full. “Should we -- go -- home?” he asks, chewing. Edessa’s eyes crinkle with amusement and she turns back to speak to Yeskia again. 

“I’ll take him home if that’s where we should be,” she says. “Unless there are other missions we need to complete here?”

“We need to know why the personnel one didn’t work,” Elian says sharply from behind her. Yeskia turns to see his communicator is closed and away now. She frowns, hoping he at least relayed to Zoric what happened before he hung up. 

“Well, of course, Councilor.” Edessa says formally, and Yeskia nearly laughs at her not using Elian’s name when she’s easily twenty cycles his senior. Edessa’s on friendly terms with everyone, nearly. 

“Actually,” Yeskia says suddenly, because it’s true, Edessa is on friendly terms with nearly everyone. “You can probably help us with that, or, well -- Jenis can. We sent a page to find them nearly -- well, a while ago -- and if they’re not both back yet --” 

“Jenis must be nowhere to be found,” says Edessa, smiling warmly at Yeskia now. “That I can help with. Give us a few ticks. Say bye to your mama for now, Ren.” 

“Bye, Mama!”

“Bye, Ren bird,” she says softly as the communicator clicks off the call.

[mosaic-system]

Hi hi!! This is someone. Who thinks they may have DID, but I want to get it from someone who has DID. What're the main experiences with DID? And can you explain to me the basis of it?

Oh gosh I’ll do my best

First off, definitely recommend seeing a therapist or other professional because I’m not that well versed in psychology and there can be other disorders that have some overlap so 10000% research (from good sources) is your friend

I will try to cite sources as well and other systems feel free to correct me if I am misinformed, as I’m still learning more even after being dx’d

For the officially official labels, the DSM says the criteria to be DIAGNOSED with DID is as follows:

1. Disruption of identity characterized by 2 or more distinct personality states involved in marking discontinuity in sense of self and agency

2. Reoccurring gaps in the recall of everyday events,important personal information, and/or traumatic events inconsistent with normal forgetting

3. Symptoms cause clinically significant distress/ imparment

4. It’s not a culture or religious thing (for kids it’s not an imaginary friend)

5. Symptoms don’t spawn from the effects of substance (ie alcohol blackout, LSD) or another medical condition (some types of seizures can mimic this)

Common symptoms (besides alters)

- depersonalization- this isn’t my body/mind/ life is in the third person

- derealization- my surroundings aren’t real/ are foggy/ everything feels far away even though it’s not

- dissociative amnesia- this goes back to the gaps in personal information and trauma, but can also extend to the last few days/weeks/months

- identity confusion- yes alters but this can extend to not knowing what your favorite things are, what religious views you have, what your sexual orientation, or professional ambitions is (especially on this one i will say this is NOT criteria, not knowing what you like can be a common human experience)

I will also add there are some other dissociative disorders that are similar but slightly different such as OSDD a/b that I cannot speak on because I am not dx’d with either nor do I know much on them, but they’re definitely worth checking out too

Another thing to note is DID has to start in childhood with repeated childhood trauma or abuse (no specific ages are named in the DSM-5, but most commonly under the age of 9, as this is a critical time for personality integration)

From what I personally understand from this sem-reliable website (take it with a grain of salt) is that people that have DID tend to have several years in the mental health system with a lot of varying diagnoses before finding a good therapist/psychologist that sees to the root of the problem (ourselves included)

These “misdiagnosises” could also be comorbidities, so it’s good to see a professional, or they could be the correct diagnosis that just happens to have some similarities with DID instead

Our Experience

We know we had childhood trauma, the extent is not known but I as Host knew of one instance but since all of this have learned it’s a lot more extensive than I thought

Since now my boyfriend knows he’s named many instances of our switch outs without either of us realizing that’s what it was until hindsight. I have been told that I’m very moody which also ended up being that others would switch out (switch meaning another altered state of consciousness comes and takes control of the body)

I’ve had many diagnoses prior ( Major Depressive Disorder which was later changed to Persistent Depressive disorder due to length of time, Bipolar Type 1, Dermatilliomania, Generalized Anxiety Disorder, Panic Disorder, PTSD now changed to C-PTSD, SPD, ADHD) and none of them seemed to “fit” what I was experiencing

I also heard voices since forever but as soon as I was old enough to understand not everyone does (and that those that do tend to end up in a mental institution, which now I understand is a very stigmatized and false belief) I told no one because of the mistrust I had from trauma and the fear of what would happen to me if I told someone

The straw that made me let that last bit out of the bag was the loss of time and amnesia were getting out of control to the point where someone would buy things and I’d find them and I could no longer be productive with the amount of time unaccounted for

End all be all, you can have most of these and not have DID, and that’s okay, if you’re worried about it see a professional, even if you have something else they will be able to help with life stabilization and symptom management which is much more important than any official diagnosis

I hope this is helpful and we’re here if you have anymore questions for us :)

-Host/Jay

[thejakeformerlyknownasprince]

"“Post-Infestation Affective Blunting Syndrome,” Dad was saying in the other room. “By far the most noticeable symptom is the flat affect—the relative lack of emotional expression—which can create the illusion that the person is genuinely not emotional, but usually that is not the case. I know that it appears Joey isn’t responding to you, but that is an adaptive response for him right now. It is a normal, healthy neurological reaction to the sort of stress...”"

DVD commentary: Is my inner Psych student showing?  Pretty sure my inner Psych student is showing throughout THX 1138.  

Seriously, though, being a huge Psychology nerd made me fascinated by the idea of how the field would respond to the discovery of yeerk infestation.  I may or may not have gone up to multiple Psych friends at multiple parties and started conversations with “You just found out that aliens which can more-or-less demonically possess people exist, and have existed for years.  What are the implications for our conception of selfhood?”  Being as it is that most nerds are also geeks, I got plenty of surprisingly good answers to that question—credit for the realization that the symptoms best parallel catatonic schizophrenia goes to a counseling peer.  I also miiiiight have written an entire DSM-IV-TR entry for “Post-Infestation Affective Blunting Syndrome.”  Because I’m a dork.

However, if you actually think about it, yeerks would probably have a big impact on the DSM-IV-TR, which was coincidentally released right around the same time this fic is set.  Psychology is eternally descriptive rather than prescriptive (although you’d never know that from watching Hollywood depictions) and as soon as a new pattern of distress or maladjustment starts emerging, psychologists start running around trying to figure out how to alleviate it.  The specific name is my attempt to imitate the real naming conventions of the DSM: “Post-Infestation” is a pretty parsimonious way of describing the fact that (unlike most things) the distress has a known origin, “Affective Blunting” is the technical term for a lack of emotional expression that isn’t underpinned by a lack of actual emotion, and “Syndrome” refers to the fact that it’s a loose collection of observable symptoms whose long-term development and course aren’t well-known.  (Like most people, I have A Lot Of Feelings on the inadequacies of the disease model of mental disorders, but *emphatic sigh* for now “syndrome” and “disorder” are the generally agreed-upon terms.)

Of course, the “affective blunting” would be just the most obvious manifestation of the experience that gets problematically shorthanded into “zombieism” throughout my series.  The difficulty of executing willful bodily motions comes partially from my own speculation about the effect of cognition and behavior being dissociated on natural neuroplasticity (basically what Steve explains with synaptic pruning going into overdrive if one isn’t using one’s body) and partially from the sparse descriptions of ex-hosts we get from canon.  Chapman and Eva are both unable to walk on their own or speak normally in the first several minutes after regaining control of their bodies, and a future in which the yeerks have had control for years is shown as one in which caged hosts are slumped over in apparent apathy rather than calling for help or fighting back (#7, #41).

However, as I wanted Steve to emphasize in that passage, PRETTY MUCH ALL MENTAL ILLNESSES ARE SITUATIONALLY ADAPTIVE.  The simple fact is that depression is an adaptive response loss of situational control, anxiety is an adaptive response to situations in which threats are both common and ambiguous, rituals are reasonably-adaptive responses to executive control problems, psychosis is a reasonably-adaptive response to perceiving the world as full of patterns and accepting all sensory stimuli, and that most symptoms are pretty good at getting people through acute Bad Shit and only later causing chronic Bad Shit once the immediate threat is gone.  That fact is important because we need to cut down on the stigma against mental illness, but it’s also important because it (we hope) potentially holds a lot of the keys to trying to help people dismantle some of that distress and maladaptation.  

I really try my best to apply that “everything has survival value, yes even things that hurt you” principle when writing about the ex-hosts and Post-Infestation… (PIABS?  Let’s call it PIABS.)  There are several moments with Tom (and, I hint, Bonnie) experiencing partial or complete dissociation, because dissociation does a decent job of mentally removing an individual from a situation that the individual cannot physically move away from.  I have some of the hosts display repetitive motions (Tom folding and unfolding his right hand, Eva spinning her bracelets, the lawyer from #23 and his finger-twitch) that are meant to be a little like rituals and a little like stimming, because both of those are repetitive motions that soothe an individual and—in this case—help to serve as reminders that one is in control of one’s own body.  Even learned helplessness (i.e. sitting still and literally not moving even to blink for hours on end) would probably be adaptive under circumstances where fighting back could only get you hurt by the yeerk.  It was also one of my personal principles to name the syndrome at all, because (and Cates was the one who pointed it out to me, but now I can’t unsee it) there are waaaaaay too many works of [fan] fiction out there that describe entire disorders (PTSD, GAD) or specific symptoms (panic attacks, flashbacks) without ever using the specific name, as if trying to have it both ways: to explore the issue without really exploring the issue through playing coy with a stigmatized topic.

On the subject of which, I felt I couldn’t show the hosts having invisible disability without showing stigma as well, because there are (in all of human history) very few instances of disability or disorder without stigma.  Le sigh.  Humans suck.  There’s this natural human tendency to go “you don’t look like you’re suffering, so you must not be suffering” that comes up in everything from conflating depression with sadness to denying assault survivors’ experiences if they don’t act in ways that align with people’s (usually Hollywood-based) ideas about what trauma looks like.  So I have to imagine that it would be hard for people who never experienced infestation firsthand to wrap their heads around the reality of it, and the fact that distress in ex-hosts often manifests as sitting there (apparently) calmly and not reacting to the situation.  Ergo, side characters like the angry mom in this scene who… just don’t get it.  And do a lot of harm with the best intentions in the world, thanks to their Not Getting of It.  Ergo, the need for ex-hosts to spend time around each other in order to support each other (i.e. the entire plot of Eleutherophobia).

And god I hope I’m being respectful about this.  I don’t know if I’m doing this right, I’m just trying my best from what little I know.  This series is just the best I can do to try and explore realistic complications of the Animorphs war.

[nancygduarteus]

The Man Who Saw Inside Himself

Sonia Ramamoorthy has plenty of smart patients. A surgeon at the University of California at San Diego, she counts among her patients members of that school’s faculty, many of whom arrive at her clinic remarkably well informed.

“They’ve been to the internet, and they’ll come in with 50 questions,” she says. But nothing prepared her for Larry Smarr. During her consultation with him about an intestinal affliction in October 2016, he interrupted her to ask, “Do you have a quick minute? I have a PowerPoint presentation.”

I wrote about Larry in this magazine five and a half years ago, documenting his remarkable efforts with a supercomputer at UCSD to study his own body in unprecedented detail—efforts that had led to his self-diagnosis of Crohn’s disease, long before definitive symptoms had manifested. Although Larry’s academic background is in astrophysics and astronomy, he has evolved into one of the world’s foremost experts in applied computer engineering. He founded, and heads, the California Institute for Telecommunications and Information Technology, or Calit2, which is exploring advanced digital technologies to rethink the way medicine is practiced.

Larry is using his own body, and his ongoing struggle with Crohn’s, as an experiment. He keeps precise measures of his body’s input (what he eats and drinks) and output (the energy he burns and what he excretes—and yes, that is precisely what it sounds like). He undergoes periodic MRIs, has his blood and stool analyzed frequently, submits to annual colonoscopies, and has had his DNA sequenced. Among the things Calit2 does with all these data is create a stunning, regularly updated three-dimensional image of his insides, which he calls “Transparent Larry.” His colleague Jürgen Schulze projects it inside “The Cave,” a virtual-reality room that literally places the viewer inside the picture. Larry can not only chart the changes taking place inside his body; he can actually see them.

As a result, he arguably knows more about his own inner workings than anyone else ever has. His goal, as he puts it, is for each of us to become “the CEO of our own body.”

In the years since I first met Larry, he and Calit2 have produced a steady stream of groundbreaking studies, most notably work charting the body’s microbiome, the jungle of bacteria that line the human intestines. We have at least as many of these alien cells inside our bodies as we have cells that carry our DNA—Larry and some other researchers believe they may actually outnumber our DNA-carrying cells by a factor of 10 to 1.

It is useful to adopt Larry’s way of thinking about the body as a torus, a donut-shaped structure with a tunnel that runs through its center: our gastrointestinal tract. Food and drink are foreign objects we send through this tunnel from mouth to anus, with various way stations in between: esophagus, stomach, small intestine, large intestine, and so on. As the food or liquid progresses, nutrients are extracted and waste is propelled downward. Much of this work is performed for us by bacteria, a whole ecosystem of microorganisms that were uncountable, unclassified, and therefore essentially unexplored before the declining cost of gene sequencing and the exponential increase in computing speed made all that possible. Working with UCSD’s Center for Microbiome Innovation, Larry has his biweekly stool samples genetically sequenced, and then transfers that information into a supercomputer, where it is correlated with changes in his diet, weight, medications, and symptoms.

This regimen is more than any normal person could, or would, undertake, but Larry believes that portable sensors and tracking software will soon make such monitoring simple enough that it will become commonplace. If and when millions of people ultimately pool their personal data on the internet, they will establish the first comprehensive, fact-based, real-time template for the human body. This will enable physicians to define disease not as a theoretical grouping of symptoms but as a precise physical anomaly in a specific patient. Treatment of his own disease has given Larry an opportunity to demonstrate exactly how this might work.

Crohn’s, an inflammatory bowel disease, was an unpleasant discovery during what began as an effort to simply lose weight. With the help of Transparent Larry, he discovered the affliction well before clinical medicine could have diagnosed it. But when I met him, in 2012, the effects were clear: abdominal bloating, rectal bleeding, intestinal discomfort, and other problems. Looking at 3-D images of his intestines, Larry could see a severely inflamed portion of his colon, which was the likely cause of his increasing distress, and which, he suspected, at some point would have to be removed. In the years since, the disease—which is not fatal, but can be quite painful—has progressed.

Three and a half years ago, when he underwent an unrelated hernia surgery, Larry asked that a colorectal surgeon take, in effect, a “flyover” look at his colon. At his request, Ramamoorthy, the chief of the colorectal-surgery division at UC San Diego Health, was called in, and after examining Larry’s colon closely, she noted in his records that the afflicted segment looked inflamed, but that the condition was not serious.

It looked and felt serious to Larry, however. In time, his symptoms became indisputable. He was in his family’s hot tub in March 2016 when his son noted that his stomach looked very swollen. Already, the volume of stool he was producing had been getting smaller and smaller.

A full-body CT scan and a CT virtual colonoscopy showed that the walls of the affected six-to-nine-inch stretch of colon were dramatically inflamed. In essence, the contents of his intestines were being forced through an opening that had shrunk from the width of a fire hose to that of a soda straw. His colon was locked in a self-reinforcing cycle: The distress worsened the inflammation, which further narrowed the tube. Harvey Eisenberg, the doctor who founded the imaging center that performed Larry’s scans, saw the changes and told him in the summer of 2016, “This is getting pretty bad. You know, I’m not your doctor, but if I were … It’s time to get this out. It can’t do anything but harm.”

Larry made an appointment with his primary doctor, Bill Sandborn, an internationally known gastroenterologist, not to ask him what should be done, but to tell him what should be done: “I have come to the conclusion that my future health depends on removing six to nine inches of my sigmoid colon,” Larry wrote in a pre-appointment email. “This is NOT an urgent issue, but I would like to get the process beginning.”

Larry made a full presentation to Sandborn in early September, complete with a 3-D-printed plastic model of his colon whose design was based on an abdominal MRI. Sandborn concurred with Larry’s diagnosis and referred him back to Ramamoorthy.

Surgery is a conservative profession. Regularly skating on the edge of life and death demands a certain amount of ego; experience—both good and bad—has a way of hardening convictions about the right way to proceed. “We’re stubborn,” Ramamoorthy told me. “Surgery is a time for people to focus, for people to be serious.” Experimenting with fancy new technology is not always a surgeon’s top priority.

Ramamoorthy is from a family of engineers, however, so she was intrigued. She knew that Larry was one of the stars at UCSD, so she was more willing than she might otherwise have been to work with a patient who not only thought he knew best but who wanted, in effect, to hijack her operating room. “I mean, he’s obviously a genius,” she said. “Why would I not look at what he was interested in?”

“She was a dream doctor for me,” Larry told me. “She knows that more information is going to make her a better surgeon, with a better outcome for the patient.”

Larry told Ramamoorthy that he felt like he was going to explode. His belly was severely distended. The rectal bleeding had worsened, and the volume of his stool was still in decline. Then came the PowerPoint. Among the data Larry presented were details about his C-reactive-protein levels, which measure inflammation, and which had multiplied nearly sixfold in the previous month. Last, he invited Ramamoorthy across campus to his Calit2 building, where he brought her into the Cave.

Like everyone who sees the virtual-reality room, Ramamoorthy was at first amazed. Then she was struck by how useful the images were. Inside our bellies, the intestines are a jumble of coiled tissue, resting among other organs and vital blood vessels. The twists and turns are not the same in everyone, so when a surgeon peers in, she encounters a layout that can differ from one person to the next and that, considering the coils are folded into such a small space, can be hard to sort out. In the operating room, the patient is placed on a reclining board with his head down, so that gravity eases compaction and makes the work a little easier. The first step in the procedure, under normal circumstances, is to insert a scope into the belly for a look around.

“We see kind of the lay of the land, and get a sense of what we have to do,” Ramamoorthy explained. She performs surgery with a state-of-the-art robot called the da Vinci Xi, a four-armed device that nearly fills the operating room. At the end of each arm is a narrow tube that can be inserted into the patient’s body; each insertion point is called a port. A small camera or the robot’s delicate fingers can be threaded through the tubes at these ports. Placement of the ports is crucial, because the camera and fingers that extend from them into the patient’s viscera must be set precisely in the area where Ramamoorthy intends to cut.

When using the da Vinci, Ramamoorthy does not peer directly into the patient’s body, but instead views it through a scope at the da Vinci’s workstation, which has a screen to project what the robot’s cameras see, and hand controls with which she can manipulate the robot’s fingers. The first step in Larry’s procedure would be to determine exactly where to place the ports in his belly.

Inside Transparent Larry, however, Ramamoorthy got a jump on the surgery a week early. She could see which portion of the colon would have to be removed, where it was located, and how it was shaped. All the peculiar twists and folds of Larry’s organs were displayed. She could see, near the upper-left end of his colon, where it was attached to his spleen, and where, in another spot, one of its folds pressed against his bladder—both areas of surgical risk. “You’re the doctor, not me,” Larry told her, pointing to a precise spot, “but I would start cutting here.” Pointing to another spot, he added, “And cutting here makes a good deal of sense.”

“That’s about right,” she said.

She would later calculate that this virtual inspection “probably saved us about an hour’s worth of time during surgery.” That’s a valuable advantage, she explained, because the longer a patient is under anesthesia, the more likely he is to suffer postoperative complications.

When it came time for Ramamoorthy to review the necessary consent forms with Larry, both understood the surgical plan exactly, where the danger points were, and when decisions might have to be made in the moment—not in a generic sense, as with most surgeries, but with great specificity. Larry was functioning, in a concrete sense, as his body’s CEO.

“I was really the learner and he was the teacher,” Ramamoorthy said.

Before the surgery, Larry arranged for Intuitive Surgical, which makes the da Vinci, to work with Jürgen Schulze, his colleague, to feed his 3-D images directly into the robot. This would enable Ramamoorthy to see 3-D virtual images in her scope alongside the real images of Larry’s colon from the da Vinci’s stereo high-definition camera. Days before the surgery, she told Schulze that she wanted him to participate in the procedure. When Schulze initially demurred, citing a discomfort with blood, Larry told him: “Man up.”

The scene in Larry’s operating room on November 29, 2016, looked more like a crowded booth at an engineering convention than a surgical theater. Larry’s supine body, completely draped in blue paper except for his swollen belly—tinted orange with antibacterial swabbing—was surrounded by a thicket of white, plastic-clad robotic arms and industrious doctors, nurses, and technicians. The university’s media-relations office had gotten wind of the groundbreaking effort, so a video crew was present too. Schulze was there with his laptop, manipulating the virtual version of Larry’s insides. Ramamoorthy, after making the initial incisions and inserting the rods containing the robot’s camera and fingers, sat in a corner at the controls, orchestrating the procedure. “I love it!” she exclaimed as they began. “This team is on!”

Explaining her moves as she worked, the surgeon called out from time to time for Schulze to tinker with the virtual image. “Maybe give me a lateral view of the bladder from the right side,” she said at one point.

The virtual images were so helpful, she said later, that she wishes she could have them every time she operates: “It was wonderful. It was like the difference between driving around before and after Google Maps.”

The only overtly bloody moment came when the portion of Larry’s colon was removed. It was hugely swollen, a mass of inflamed tissue the size of a melon.

About four months later, presenting his case in a lecture to the medical staff of UC San Diego Health’s Moores Cancer Center, Larry quipped, “I myself had a sort of a cameo. I played the belly in the video, sort of a Quentin Tarantino thing.”

Larry proudly passed around a plastic model of his new, streamlined colon. His symptoms had abated, and he had gone back to walking 10,000 steps a day only two weeks after his five-hour surgery. And although his blood and stool biomarkers are now back in the normal range—one of them 2,000 times lower than it was at his sickest—Larry is still on the case, trying radical shifts in his diet and tracking the effects on his microbiome. He will be 70 this year, and he hopes to find a more permanent solution to his affliction. He is still frustrated, he told me, echoing the lament of scientists everywhere, “by what I don’t know.”

Turning a two-dimensional MRI into three dimensions is not that hard, Larry told the audience at his lecture. The remaining challenge is to get more doctors to be like Ramamoorthy, and to get more engineers working in concert with them. Larry wants to build a hub on the UCSD campus to meld the isolated disciplines into a functioning whole. “We have the top-line medical people and facilities, and we have the researchers,” he said. “It’s just the social organization of getting out of the stovepipes long enough to put these kind of teams together.”

When I first met Larry Smarr, he was trying to chart a new future for the diagnosis of illnesses. Today, he’s also charting a future for the surgeries used to treat them. And he’s demonstrating—quite dramatically—what it’s like when the patient, not the doctor, is in charge.

This article appears in the March 2018 print edition with the headline “The World’s Most Body-Conscious Man.”

from Health News And Updates https://www.theatlantic.com/magazine/archive/2018/03/larry-smarr-the-man-who-saw-inside-himself/550883/?utm_source=feed

[ionecoffman]

The Man Who Saw Inside Himself

Sonia Ramamoorthy has plenty of smart patients. A surgeon at the University of California at San Diego, she counts among her patients members of that school’s faculty, many of whom arrive at her clinic remarkably well informed.

“They’ve been to the internet, and they’ll come in with 50 questions,” she says. But nothing prepared her for Larry Smarr. During her consultation with him about an intestinal affliction in October 2016, he interrupted her to ask, “Do you have a quick minute? I have a PowerPoint presentation.”

I wrote about Larry in this magazine five and a half years ago, documenting his remarkable efforts with a supercomputer at UCSD to study his own body in unprecedented detail—efforts that had led to his self-diagnosis of Crohn’s disease, long before definitive symptoms had manifested. Although Larry’s academic background is in astrophysics and astronomy, he has evolved into one of the world’s foremost experts in applied computer engineering. He founded, and heads, the California Institute for Telecommunications and Information Technology, or Calit2, which is exploring advanced digital technologies to rethink the way medicine is practiced.

Larry is using his own body, and his ongoing struggle with Crohn’s, as an experiment. He keeps precise measures of his body’s input (what he eats and drinks) and output (the energy he burns and what he excretes—and yes, that is precisely what it sounds like). He undergoes periodic MRIs, has his blood and stool analyzed frequently, submits to annual colonoscopies, and has had his DNA sequenced. Among the things Calit2 does with all these data is create a stunning, regularly updated three-dimensional image of his insides, which he calls “Transparent Larry.” His colleague Jürgen Schulze projects it inside “The Cave,” a virtual-reality room that literally places the viewer inside the picture. Larry can not only chart the changes taking place inside his body; he can actually see them.

As a result, he arguably knows more about his own inner workings than anyone else ever has. His goal, as he puts it, is for each of us to become “the CEO of our own body.”

In the years since I first met Larry, he and Calit2 have produced a steady stream of groundbreaking studies, most notably work charting the body’s microbiome, the jungle of bacteria that line the human intestines. We have at least as many of these alien cells inside our bodies as we have cells that carry our DNA—Larry and some other researchers believe they may actually outnumber our DNA-carrying cells by a factor of 10 to 1.

It is useful to adopt Larry’s way of thinking about the body as a torus, a donut-shaped structure with a tunnel that runs through its center: our gastrointestinal tract. Food and drink are foreign objects we send through this tunnel from mouth to anus, with various way stations in between: esophagus, stomach, small intestine, large intestine, and so on. As the food or liquid progresses, nutrients are extracted and waste is propelled downward. Much of this work is performed for us by bacteria, a whole ecosystem of microorganisms that were uncountable, unclassified, and therefore essentially unexplored before the declining cost of gene sequencing and the exponential increase in computing speed made all that possible. Working with UCSD’s Center for Microbiome Innovation, Larry has his biweekly stool samples genetically sequenced, and then transfers that information into a supercomputer, where it is correlated with changes in his diet, weight, medications, and symptoms.

This regimen is more than any normal person could, or would, undertake, but Larry believes that portable sensors and tracking software will soon make such monitoring simple enough that it will become commonplace. If and when millions of people ultimately pool their personal data on the internet, they will establish the first comprehensive, fact-based, real-time template for the human body. This will enable physicians to define disease not as a theoretical grouping of symptoms but as a precise physical anomaly in a specific patient. Treatment of his own disease has given Larry an opportunity to demonstrate exactly how this might work.

Crohn’s, an inflammatory bowel disease, was an unpleasant discovery during what began as an effort to simply lose weight. With the help of Transparent Larry, he discovered the affliction well before clinical medicine could have diagnosed it. But when I met him, in 2012, the effects were clear: abdominal bloating, rectal bleeding, intestinal discomfort, and other problems. Looking at 3-D images of his intestines, Larry could see a severely inflamed portion of his colon, which was the likely cause of his increasing distress, and which, he suspected, at some point would have to be removed. In the years since, the disease—which is not fatal, but can be quite painful—has progressed.

Three and a half years ago, when he underwent an unrelated hernia surgery, Larry asked that a colorectal surgeon take, in effect, a “flyover” look at his colon. At his request, Ramamoorthy, the chief of the colorectal-surgery division at UC San Diego Health, was called in, and after examining Larry’s colon closely, she noted in his records that the afflicted segment looked inflamed, but that the condition was not serious.

It looked and felt serious to Larry, however. In time, his symptoms became indisputable. He was in his family’s hot tub in March 2016 when his son noted that his stomach looked very swollen. Already, the volume of stool he was producing had been getting smaller and smaller.

A full-body CT scan and a CT virtual colonoscopy showed that the walls of the affected six-to-nine-inch stretch of colon were dramatically inflamed. In essence, the contents of his intestines were being forced through an opening that had shrunk from the width of a fire hose to that of a soda straw. His colon was locked in a self-reinforcing cycle: The distress worsened the inflammation, which further narrowed the tube. Harvey Eisenberg, the doctor who founded the imaging center that performed Larry’s scans, saw the changes and told him in the summer of 2016, “This is getting pretty bad. You know, I’m not your doctor, but if I were … It’s time to get this out. It can’t do anything but harm.”

Larry made an appointment with his primary doctor, Bill Sandborn, an internationally known gastroenterologist, not to ask him what should be done, but to tell him what should be done: “I have come to the conclusion that my future health depends on removing six to nine inches of my sigmoid colon,” Larry wrote in a pre-appointment email. “This is NOT an urgent issue, but I would like to get the process beginning.”

Larry made a full presentation to Sandborn in early September, complete with a 3-D-printed plastic model of his colon whose design was based on an abdominal MRI. Sandborn concurred with Larry’s diagnosis and referred him back to Ramamoorthy.

Surgery is a conservative profession. Regularly skating on the edge of life and death demands a certain amount of ego; experience—both good and bad—has a way of hardening convictions about the right way to proceed. “We’re stubborn,” Ramamoorthy told me. “Surgery is a time for people to focus, for people to be serious.” Experimenting with fancy new technology is not always a surgeon’s top priority.

Ramamoorthy is from a family of engineers, however, so she was intrigued. She knew that Larry was one of the stars at UCSD, so she was more willing than she might otherwise have been to work with a patient who not only thought he knew best but who wanted, in effect, to hijack her operating room. “I mean, he’s obviously a genius,” she said. “Why would I not look at what he was interested in?”

“She was a dream doctor for me,” Larry told me. “She knows that more information is going to make her a better surgeon, with a better outcome for the patient.”

Larry told Ramamoorthy that he felt like he was going to explode. His belly was severely distended. The rectal bleeding had worsened, and the volume of his stool was still in decline. Then came the PowerPoint. Among the data Larry presented were details about his C-reactive-protein levels, which measure inflammation, and which had multiplied nearly sixfold in the previous month. Last, he invited Ramamoorthy across campus to his Calit2 building, where he brought her into the Cave.

Like everyone who sees the virtual-reality room, Ramamoorthy was at first amazed. Then she was struck by how useful the images were. Inside our bellies, the intestines are a jumble of coiled tissue, resting among other organs and vital blood vessels. The twists and turns are not the same in everyone, so when a surgeon peers in, she encounters a layout that can differ from one person to the next and that, considering the coils are folded into such a small space, can be hard to sort out. In the operating room, the patient is placed on a reclining board with his head down, so that gravity eases compaction and makes the work a little easier. The first step in the procedure, under normal circumstances, is to insert a scope into the belly for a look around.

“We see kind of the lay of the land, and get a sense of what we have to do,” Ramamoorthy explained. She performs surgery with a state-of-the-art robot called the da Vinci Xi, a four-armed device that nearly fills the operating room. At the end of each arm is a narrow tube that can be inserted into the patient’s body; each insertion point is called a port. A small camera or the robot’s delicate fingers can be threaded through the tubes at these ports. Placement of the ports is crucial, because the camera and fingers that extend from them into the patient’s viscera must be set precisely in the area where Ramamoorthy intends to cut.

When using the da Vinci, Ramamoorthy does not peer directly into the patient’s body, but instead views it through a scope at the da Vinci’s workstation, which has a screen to project what the robot’s cameras see, and hand controls with which she can manipulate the robot’s fingers. The first step in Larry’s procedure would be to determine exactly where to place the ports in his belly.

Inside Transparent Larry, however, Ramamoorthy got a jump on the surgery a week early. She could see which portion of the colon would have to be removed, where it was located, and how it was shaped. All the peculiar twists and folds of Larry’s organs were displayed. She could see, near the upper-left end of his colon, where it was attached to his spleen, and where, in another spot, one of its folds pressed against his bladder—both areas of surgical risk. “You’re the doctor, not me,” Larry told her, pointing to a precise spot, “but I would start cutting here.” Pointing to another spot, he added, “And cutting here makes a good deal of sense.”

“That’s about right,” she said.

She would later calculate that this virtual inspection “probably saved us about an hour’s worth of time during surgery.” That’s a valuable advantage, she explained, because the longer a patient is under anesthesia, the more likely he is to suffer postoperative complications.

When it came time for Ramamoorthy to review the necessary consent forms with Larry, both understood the surgical plan exactly, where the danger points were, and when decisions might have to be made in the moment—not in a generic sense, as with most surgeries, but with great specificity. Larry was functioning, in a concrete sense, as his body’s CEO.

“I was really the learner and he was the teacher,” Ramamoorthy said.

Before the surgery, Larry arranged for Intuitive Surgical, which makes the da Vinci, to work with Jürgen Schulze, his colleague, to feed his 3-D images directly into the robot. This would enable Ramamoorthy to see 3-D virtual images in her scope alongside the real images of Larry’s colon from the da Vinci’s stereo high-definition camera. Days before the surgery, she told Schulze that she wanted him to participate in the procedure. When Schulze initially demurred, citing a discomfort with blood, Larry told him: “Man up.”

The scene in Larry’s operating room on November 29, 2016, looked more like a crowded booth at an engineering convention than a surgical theater. Larry’s supine body, completely draped in blue paper except for his swollen belly—tinted orange with antibacterial swabbing—was surrounded by a thicket of white, plastic-clad robotic arms and industrious doctors, nurses, and technicians. The university’s media-relations office had gotten wind of the groundbreaking effort, so a video crew was present too. Schulze was there with his laptop, manipulating the virtual version of Larry’s insides. Ramamoorthy, after making the initial incisions and inserting the rods containing the robot’s camera and fingers, sat in a corner at the controls, orchestrating the procedure. “I love it!” she exclaimed as they began. “This team is on!”

Explaining her moves as she worked, the surgeon called out from time to time for Schulze to tinker with the virtual image. “Maybe give me a lateral view of the bladder from the right side,” she said at one point.

The virtual images were so helpful, she said later, that she wishes she could have them every time she operates: “It was wonderful. It was like the difference between driving around before and after Google Maps.”

The only overtly bloody moment came when the portion of Larry’s colon was removed. It was hugely swollen, a mass of inflamed tissue the size of a melon.

About four months later, presenting his case in a lecture to the medical staff of UC San Diego Health’s Moores Cancer Center, Larry quipped, “I myself had a sort of a cameo. I played the belly in the video, sort of a Quentin Tarantino thing.”

Larry proudly passed around a plastic model of his new, streamlined colon. His symptoms had abated, and he had gone back to walking 10,000 steps a day only two weeks after his five-hour surgery. And although his blood and stool biomarkers are now back in the normal range—one of them 2,000 times lower than it was at his sickest—Larry is still on the case, trying radical shifts in his diet and tracking the effects on his microbiome. He will be 70 this year, and he hopes to find a more permanent solution to his affliction. He is still frustrated, he told me, echoing the lament of scientists everywhere, “by what I don’t know.”

Turning a two-dimensional MRI into three dimensions is not that hard, Larry told the audience at his lecture. The remaining challenge is to get more doctors to be like Ramamoorthy, and to get more engineers working in concert with them. Larry wants to build a hub on the UCSD campus to meld the isolated disciplines into a functioning whole. “We have the top-line medical people and facilities, and we have the researchers,” he said. “It’s just the social organization of getting out of the stovepipes long enough to put these kind of teams together.”

When I first met Larry Smarr, he was trying to chart a new future for the diagnosis of illnesses. Today, he’s also charting a future for the surgeries used to treat them. And he’s demonstrating—quite dramatically—what it’s like when the patient, not the doctor, is in charge.

This article appears in the March 2018 print edition with the headline “The World’s Most Body-Conscious Man.”

Article source here:The Atlantic