Kim Drew Wright

Octopus Daughter, Octopus Mom 

Autophagy means ‘self-eating.’ A seemingly healthy octopus will stop feeding. She trembles and becomes uncoordinated – her central nervous system gone awry. Altering her posture, she holds her arms stiffly at their base while the tips curl inward and then bites one off. She usually dies within a couple days. If a scientist examines her brain, they will see no clear evidence of damage. 

You’d have thought that I’d rounded up all the knives in the house at one time, but that’s not how it happened. The illusion was if I just got rid of that knife, then the temptation would be gone. So I hid them sporadically, stashing them in convenient places when my fourteen-year-old daughter handed one over after cutting her fingers. You might find a steak knife in a pot under the kitchen cabinet. A boning knife deep in the back of a nightstand. If I needed to shave my legs, I got my razor out of a gift bag on the attic steps. After I’d hidden all the smaller knives, I found her hovering over the kitchen sink, a butcher knife sunk into her thumb. I asked her why she did it. She answered, “To help me feel something.”

     Mattie had been my happy child, the one I never had to worry about. In middle school she won the Positive Humor Award – As one who sees the world from a positive, humorous, or good-natured point of view. The first indicator that anything was wrong happened on a Sunday night in February with the simple phrase, “I’m not thinking right.” She had congestion and a sore throat. 

     Abruptly, my sunshine daughter became the complete opposite of how she’d been her entire life. She had a natural inquisitiveness, loved learning and earned a spot at Maggie L. Walker Governor’s School, one of the top-ranked public high schools in the nation. Now, second semester freshman year and she refused to go. She got in the car and cried. She immediately turned off the radio. She fretted, “I don’t think I can sit through classes acting normal.” I asked the obvious questions, “Did anything happen at school? Did someone do or say something mean to you? Are you stressed by the work or grades?” The answer to all of my questions was, “No. Nothing has happened. I don’t know why I feel this way.”

      Suddenly, she peppered sentences with “fuck,” “bitch,” and “shit,” whereas previously she reprimanded her brothers when they cussed and used cute terms like Hades for hell.  She picked at her food during meals. She had difficulty concentrating on tasks she used to fly through easily. She couldn’t read or watch television. She had headaches. Everything was too loud. She grew agitated if more than one or two people were in a room. The lights in our house were too bright. Each day got astronomically worse until she was barely eating. I worried that she was anorexic, but she showed no signs of body image issues. She said, “It feels wrong to eat.” 

     Her breathtaking dive into a depth previously unfathomable sent us flailing to various doctors. A pediatrician instructed me to bring her back in a month to weigh her when I described her abrupt refusal to eat and weight loss. She did suggest a strep throat swab, rolling her eyes while commenting that PANDAS had become a “big thing lately,” like parents were jumping on a new fashion trend instead of begging for hope for their sick children. The swab was negative. When I looked up PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, the most noted symptom was sudden Obsessive Compulsive Disorder and that did not seem to fit. Her allergist we were seeing for extreme environmental allergies, who had won multiple Best Bedside Manner awards, asked why she didn’t “just snap out of it” when I mentioned her drastic plummet into depression. A therapist suggested holding an ice cube in the palm of her hand to distract from the sudden desire to cut, which did distract some but not enough. 

     I searched for other coping strategies to help her manifest her pent-up energy in safer ways. I bought her boxing gloves and a punching bag. She used a red marker to draw on herself where she wanted to cut. Her fingers, hands, and wrists remained red. In hindsight, I should have taken her straight to a neurologist, but everyone only wanted to focus on the psychiatric symptoms and the only specialists we were referred to were pediatric psychiatrists. Each one I called was booked for months. There was a national shortage. We took a tour of a teen outpatient partial hospitalization program. I worried about the other teens. I didn’t want her to be given more ways to hurt herself. I didn’t want her to hear more reasons to hurt.

     My daughter talked about suicide by hanging and where in the house to do it. She casually informed me “you go up the river, not across,” referring to the most effective way to slit your wrist. She mentioned she didn’t think she would leave a suicide note. She began to have periods of frantically needing to self-harm, during which she mostly became mute and huddled in on herself like a cornered animal. She said she was terrified, that her brain was noisy and loud. Her frustration escalated until she became frenzied. During these episodes her eyes grew black and wild. With enlarged pupils in her pale face, dark circles under her eyes like punctuation, her stare became distant and panicked. 

     One night she ran into my bathroom. I wedged the door open with my shoulder before she could lock it. She stood near the toilet with clenched jaw and fists, her body coiled with tangible tension. For the first time, I was afraid she might hurt me. She was small, not quite five foot two inches. I only had a couple of inches on her. She lunged toward me to get to a drawer that she thought contained a shaving razor. In a low growl she demanded that I “go away.” I told her repeatedly that I wasn’t going to leave, that I had to make sure she was safe. A determined look in her eyes made me frightened she would hit me. Then she climbed in the bathtub and started clawing furiously at a bar of soap with her fingernails, sending little shivers flying. She whittled one end into a point. She pressed it against her bare legs. 

      She gave up and dodged past me to lie down on the floor of the alcove in my room where she had recently started sleeping to be near me. When she became this overwrought, the only thing that reset her was going to sleep – like a drunk person sleeping it off. When she woke she was more like herself again. These frantic episodes, when her eyes went large and black and wild, made her appear possessed. My child was gone. Something dark and sinister had clawed its way to the forefront in her mind and taken over. 

Octopuses exposed to the same seawater circulation system as one with autophagy can develop the condition. Originally thought that self-eating occurred when the animal was stressed or starving, researchers have since determined autophagy is more likely a result of an unknown infectious agent such as a virus or bacteria.

The night Mattie woke and told us she had a nightmare where she killed herself by wrapping a plastic bag around her head and duct taping it closed, I was afraid to go to sleep. I gave her an ultimatum that we could, either, go to the ER right then, or, she could attend the teen outpatient program we had toured. She chose the emergency room. We drove quietly into downtown, the interior of the car flickering light and dark with the passing streetlights. It was eerily quiet in the pediatric waiting room at midnight. 

     They put us in a room near the nurses’ station. The wall on the hall side was glass. We were in a fishbowl. A man in a dark jacket said he was our “sitter.” A sitter is hired by a  hospital to stay with and watch, at all times, a patient who is suicidal. 

      A Security Officer took Mattie’s backpack to do a belongings search, removing anything that could be harmful. He did not give it back. Throughout the night, hospital personnel came in and out of the room, asking the same questions. Mattie repeated how she wanted to kill herself. Her words pounded through my head and reverberated along my spine like church bells clamoring a funeral dirge. 

     There was no medical work up or scans. No neurologist. Bloodwork and a urine test were done for drug screening. A social worker searched to see which pediatric psychiatry facilities within the state had an open bed. They could send her anywhere. One had a bed three hours west of our home. Fortunately, by midday a patient was discharged from the pediatric psych facility associated with the hospital we were currently in and a police escort arranged to transfer Mattie to the center just a handful of blocks away. Only a few weeks ago, I would have never, in a thousand years, imagined we’d end up where we were. As we rode in the backseat of the police car, everything felt strange, like we were holding our breath, swimming underwater.

     After the paperwork and short tour, we left Mattie with a nurse in the residential area. I started crying. It had been an excruciating 24 hours. A staff member with the title “care partner” who walked my husband and me through the building to the exit, looked surprised and asked, “You haven’t done this before, have you?” He explained a lot of patients came and went, and came back again. For many of the girls this wasn’t their first admittance. 

     Horrible thoughts crossed my mind. What if this seemingly nice man turned out to be a pedophile? What if another patient hurt Mattie? Could they keep her safe from herself? Did the nurses know to watch her at all times? What if simply being admitted to a psych hospital traumatized her?

     As terrified as I was to leave her there, I hoped that we would get the help we needed. However, our nightmare was just beginning to burst forth. Our daughter would stay behind locked doors for fifty-nine days and nights. We drove home shell-shocked – the backseat empty. 

Octopuses have many defenses for survival. The common blanket octopus, tremoctopus violaceus, carries poisonous tentacles from the Portuguese man o’ war as a weapon to ward off predators. The veined octopus, amphioctopus marginatus, collects coconut shells to build shelter. At around five inches, one of the tiniest octopuses, the blue-ringed octopus, is the most venomous creature in the ocean. Small, with bright blue circles, they look innocent and easy to touch, but simply one bite can quickly kill you. 

The “unit” was the name for the area where Mattie and the other patients lived. The walls were cinder block and painted a dingy yellow that, just like the patients, had seen better days. If yellow could be unhappy, it would be that shade, an anemic cousin to sunshine – sickly, pale, and tinged a dull gray. The floor was speckled gray linoleum. The commons area had round tables and seats bolted to the floor. A nurses’ station behind thick glass ran the width of the room. There were three bathrooms on the right-hand side of the unit. The larger one had a couple shower stalls. The ceiling dripped when the patients in the upstairs unit took showers. A bucket  caught the leakage. 

     Unlike most psychiatric facilities, they had a lenient visitation policy and encouraged parents to participate. A parent was allowed to sleep on a rollout cot in their child’s room. It usually got quiet pretty quickly on the unit at night. Although, the first night I slept in the cot, an anxious girl could not stop pacing and imploring Jesus to help her and to help her daddy. This went on for hours until a nurse sat with her and recited the Lord’s Prayer repeatedly into the night. It was sad. It was sweet.

     Hydroxyzine, or vistaril, was an antihistamine that made the girls sleepy. It was listed on Mattie’s chart as a PRN medication that could be given for anxiety or at bedtime to help induce sleep. PRN comes from the Latin “pro re nata,” which means “for an occasion that has arisen.” Once her favorite subject, Latin was now simply used to describe her medication. Her treatment team placed her on an antidepressant, and discussed whether to add a trial of additional drugs for “severe depression that does not seem to be improving.” They noted, “patient is not getting better and it is not for lack of patient trying.” They added Trazadone, which would later be switched to Seroquel to induce sleep. Lithium was added in an effort to try and stem the constant suicidal thoughts. During her stay, they would switch her antidepressant three times plus add an adjunct trying to find a drug that worked. 

     Sometimes, the care partners would ask the girls if they wanted little cups with cotton balls soaked in aromatherapy oils like lavender or lemon. Mattie especially enjoyed lemon and described it as being “surrounded by color.” The girls held the tiny paper cups to their noses, breathing deeply then placing them back on the table to discard on their turn of the nightly card game of Uno or Skipbo. Mattie always held a stuffed animal, usually a yellow Easter Peep named Tom who she referred to as her “anchor.” The girls spent hours at the tables coloring or playing games. Trouble was another favorite, where you pushed down on a plastic bubble to flip the dice inside, then moved colored pegs around the board trying to get back home. 

Widely known for their ability to camouflage themselves to their environment, octopuses effectively hide in plain sight. They change color via pigment sacs in their skin, and change texture through papilli, areas that expand or retract. The mimic octopus, thaumoctopus mimicus, takes this a step further to impersonate other species, especially venomous ones like lionfish or banded sole.

Occasionally, the nurses would perform room checks, tossing the girls’ rooms in search of contraband. Mattie grew clever at hiding things, but the nurses would find broken utensils within packs of cards and magazines. The girls who cut took the plastic utensils from the cafeteria, snapped them in pieces and dug the jagged edges into their skin. 

     Patients discussed upcoming discharge dates like they were inmates doing time. Mostly they were happy to get out, but some were anxious. Within a week, no one was left who had been there on day one. Even though people surrounded us 24/7, we grew lonely. The names and faces of the girls blurred. The other parents were of two types, either you never saw them or they spent as much time as they could on the unit, like me. Most of the parents were absent, even those of the young kids. The visitation rooms usually did fill up around dinnertime. You could only use them if your child was considered low suicide risk. Mattie stayed at moderate almost the entire time inpatient, which meant she could never be alone even while using the restroom. Several girls told Mattie she was lucky to have a mother that cared. One teen asked me to adopt her.

     The girls added up quickly. One was a talented gymnast. One was there for fighting, but quick to laugh. One taught me the card game Trash. One asked to borrow Mattie’s stuffed animals. One had a tough face, but admitted she wanted to win Uno really badly. One looked like a Barbie Doll. One had a dirty mouth, but liked to pray. I didn’t know how the staff could do their jobs. My emotional reserves quickly depleted. The girls’ strong adaptations broke my heart. The absent parents broke my heart. The panicked looks on the parents that were there broke my heart. My sick little girl who couldn’t come home did my broken heart in.

     The counselor  assigned to Mattie pulled me into a meeting room. He asked how I was doing. I told him, “I feel how Mattie feels. Until she’s better, I won't be okay.” He explained about enmeshment, when the boundaries between two people became permeable and you felt each other’s emotions. I thought of the adage, “A mother is only as happy as her saddest child,” while he wrote my response down in her chart.  According to the medical records, a core chunk of therapy time consisted of discussing with Mattie how my visits made her feel. He suggested I not visit as much. I started shortening my time within its walls. She called to ask when I was coming. She stole a fork at dinner. She carved LOSER into her wrist. I didn’t think these were good indicators that she did better without me. 

     On the facility’s fact sheet the medical director stated, “On any inpatient psychiatric unit for children, upwards of 90 percent of children will have some kind of history of trauma.” They asked her if her brothers touched her. Even after Mattie told them that she knew what trauma meant and nothing like that had happened to her, their explanation for her continued suicidal ideation remained, “She’s just not telling us something.” I couldn’t understand how they could be so nonchalant, slow, and closed-minded about searching for a cause. I had taken psychology classes in college. I knew how easy it was to blame the mother. I felt trapped under thick glass. I wanted to scream at their dull, calm faces. I knew I was the only one reacting appropriately.

     When they asked about our visits Mattie said, “My dad treats me how I used to be, he talks about going to Busch Gardens this summer. He treats me like nothing has changed, like I’m the same person.” She said his visits were hard because she was not herself. Astutely, she said that I treated her “like some other kid.” Her illness had hijacked my precious child’s life and stolen her from me. 

When an attack is imminent an octopus will eject toxic ink that contains tyrosinase, an irritant that dulls the senses of sight, smell and taste. The expulsion should propel the octopus forward and away from their predator, for if they do not escape their own ink cloud they can die. 

Mattie was absent from school and it didn’t look like she would be going back to normal daily life anytime soon. We were past the point of no return and it was time to be completely open about what our family was struggling through. I posted on my social media feed, describing Mattie’s abrupt 180 in personality. People reached out who had been touched by major depression. Several people mentioned PANS – Pediatric Acute-onset Neuropsychiatric Syndrome and an advocate reached out to me. 

     PANS veered from PANDAS in that, sudden severe food restriction could be the main symptom instead of OCD or movement tics and a strep infection did not need to be present. Numerous other triggers could be the catalyst for the illness. Parents often mentioned that the onset was so drastic they could name the day they lost their child. For us, it was that day in February when she had cold symptoms and declared she wasn’t thinking right. 

     The National Institute of Mental Health’s second main criterion for a PANS diagnosis was the acute onset of concurrent neuropsychiatric symptoms from two additional categories: anxiety; depression; irritability; developmental regression; motor/sensory abnormalities; and somatic symptoms. Sudden intense separation anxiety was often noted in younger children. Dramatic personality changes and a sense of inexplicable inner agitation might occur. Self-injurious behaviors and suicidal ideation were common. Concentration, memorization, and attention span decline were noted as affecting school performance. Sensitivity to light, noise, smell, taste, or texture might appear.

     One aspect that differentiated PANS from a more straightforward psychiatric diagnosis was that patients with PANS tended to get worse on certain antidepressants instead of better. We had already seen girls improve and leave the hospital, a pattern that would repeat each week that she was inpatient until she had a two-column list of names written in her notebook, and a blur of faces in our memory. More than one nurse mentioned to me, mother-to-mother, that my daughter did not present like their typical patient and they would be seeking additional medical attention, too. Mattie continued to get worse. 

     The third major criterion was that symptoms were not caused by another medical condition, and this precluded that doctors perform a comprehensive diagnostic evaluation that ruled out other potential disorders. That was what we so desperately wanted to determine. We repeatedly requested various blood tests and that other medical conditions be considered. The psychiatrists hindered our efforts by repeatedly refusing. The first time I asked them to perform a Lyme test, the psychiatrist responded, “You don’t get Lyme in Virginia. That’s more likely if you’re in New England after hiking”. Eventually, a PANS advocate persuaded a neurologist within the hospital system Mattie was in to examine her inpatient. He spent an hour and a half with us. He said, “There is nothing in her story to rule out PANS.” He recommended a 28-day trial of antibiotics. They would start his protocol and then stop halfway through.

Octopuses’ brain-to-body ratio is larger than any invertebrate, making them surprisingly wily creatures. They have been known to sneak out of their tank, visit another fish tank, eat the fish, close the lid, and return to their own tank as if nothing happened. They kill time by playing with objects, like bouncing pill bottles off a stream of water from the intake valve like a child knocking a ball against a wall. One kept squirting water at the lights, short-circuiting the aquarium’s power and causing the University of Otago in New Zealand to release the culprit back to the sea. In an experiment at the Seattle Aquarium in which one trainer consistently fed them and another poked them with a bristly stick, the octopuses were capable of recognizing and identifying the individual staff. An octopus that took a dislike to a certain employee would spray her with water when she walked by its tank. Scientists have noted that, unlike fish, these creatures are aware of their captivity and their behaviors are influenced by that awareness. They, also, seem to know when they are being watched and when they are not. 

Each week of hospitalization brought a rotation of medical teams.  The intensity of week four would make the first few weeks seem like a day spa. While Mattie did not have a love for any of the psychiatrists, she especially disliked Dr. J, the new attending. She was taller than the previous doctors and had long black hair and a rigid posture. Mattie told Dr. J during rounds, “I want to make myself bleed.” Dr. J asked how much of her wanted to die versus to live. Mattie answered that ninety-five percent of her wanted to die and only five percent of her wanted to live. She said she didn’t have the opportunity to kill herself within the hospital, but if one arose then she would take it. She told her that suicide “felt like the next step. I just want to be out of my misery.” 

     Dr. J told her that if she really wanted to kill herself, she was smart enough to know what to say – that she was getting better and no longer wanted to hurt herself – in order to get discharged to actually have the opportunity to kill herself at home. Mattie felt like she was basically daring her to do it. She cried and told Dr. J that she did know that she could lie and get discharged, but that she didn’t want to do that – she wanted them to help her get better. Her suicidal thoughts ranked 10 out of 10 that day. After talking to Dr. J, she said she wanted to punch someone so they might understand her pain. 

     Mattie had always been pale, but now she was sickly white. Her pupils, which had grown huge and black during her frantic episodes before the hospital, now seemed to be that way all the time. She had dark circles underneath her eyes. LOSER stood out red and oozing on her wrist. Did that ugly word scarred into her flesh mean she was branded for life? I wanted to drop to my knees and wail for my lost girl. What had happened to my beautiful little girl who wanted to conquer the world? Where was my child who had made t-shirts with her face on them when she was running for class president? Was she still inside this shell of a girl wasting away inside of this place? 

     The psychiatrists asked her what she thought about “her mother’s pursuit of a PANS/PANDAS diagnosis.” Mattie replied, “I don’t care what anyone calls it – I just want to get better.” Dr. J described Mattie as having, “…obsessional thoughts of suicide and self-harm with increasing self-harm behaviors. She continues to report severely depressed mood, suicidal ideation, urges to self-harm as a proxy for suicide, but seems generally brighter and more hopeful despite statements to the contrary.” Dr. J described Mattie’s affect as “mostly flat, baseline irritability, fewer smiles and laughter.” She planned to discharge her by the end of the week. 

     We demanded a meeting. Our daughter was more suicidal than when we drove her to the emergency room. Our concerns were met with Dr. J’s comment, “There are plenty of suicidal people walking around just fine.” 

     They would not collaborate with our new pediatrician versed in PANS. They would not allow a temporary discharge to see a specialist. They would not perform an EEG. They refused to do requested labwork. Mattie punched the rubber mattress in her room until her knuckles bled. A nurse reported, “When learned she was going home, [she] said everyone was giving up on her and she was going to kill herself.” I might not have been a psychiatrist, but I didn’t think calling the bluff of a teenager who repeatedly said that she would kill herself was a good idea.  

Octopuses’ optic glands are programmed for self-destruction called senescence after mating.  The mothers starve, focusing solely on protecting her hatch of eggs, while the male leaves to focus on his own death. The giant Pacific octopus has a large brood of up to 100,000 eggs, but only one percent are expected to survive to adulthood. The mother usually spends up to six months protecting her eggs until they hatch. Aristotle commented that octopus mothers after giving birth “…become stupid, and are not aware of being tossed about in the water.” During this time, she stops feeding, only gaining energy by metabolizing her own body. The skin around her eyes retracts, making them loom large and ghostly in her head. Her movements become uncoordinated. She grows pale. White lesions appear on her skin and do not heal. She continuously waves her arms over her brood, ensuring they receive an adequate oxygenated and nutrient-rich water supply while warding off predators. 

My nerves were shot. I needed a Xanax if I was going to be able to deal with any more distressed girls and doctors without answers. I asked to be let off the unit so I could visit my locker. I bit the inside of my cheek, willing myself not to cry while I waited for someone to unlock the door.

     Lawanda was one of the regular staff members who walked visitors on and off the unit. She was an unassuming woman, who didn’t say much but always had a kind word. 

    I walked quickly, muttering, “I don’t know if I can take much more of this.” She unlocked the closet with the lockers. I shook as I fumbled my pocketbook out and dug through it for my pill bottle. In a calm voice, Lawanda instructed me to take some deep breaths. “You have to take care of yourself so that you can take care of your girl. Stay strong.” She breathed with me, grounding me. My breath and shaking slowed. She asked, “Do you need a hug?” I nodded, since tears closed my throat. It wasn’t scripted. I’m sure it was against the rules. Lawanda wasn’t a psychiatrist. She didn’t have a fancy office with a medical degree framed on the wall, yet, she showed the most understanding, compassion, and empathy that I would experience in that place. I was learning that the people who were trained to listen were often the ones who heard you the least.

     A second opinion determined it wasn’t safe to discharge Mattie actively suicidal. I demanded Dr. J be removed from my daughter’s case. Dr. M got assigned. Dr. M suggested a crisis stabilization facility in Leesburg, a two and a half hour drive north from Richmond, just shy of the Maryland border. She estimated that Mattie would stay there for several months and then transfer to a facility in the eastern part of the state for long-term residential. She guessed our daughter would be away from home for a year to a year and a half. The psychiatrists often spoke of “evidence” for diagnoses, yet when I asked her reasoning she replied, “We think she’s just not telling us something. She’s stuck.”

     The Leesburg application listed behavioral concerns to circle if applicable, including: violent preoccupation, sexual preoccupation, gang involvement, abusive to animals, deceitfulness, threats, and fire setting. It focused heavily on sexual reactivity, when a child has been sexually abused, so that inappropriate sexual behaviors become learned and they, in turn, repeat the behaviors. There was space to list legal charges, convictions, and substance abuse history. Most of the kids were court ordered into the facility. 

     Their handout stated, “The children we treat have long histories of sexual, physical, and/or emotional abuse. Often they respond in ways that are interpreted as characteristic of personality and/or conduct disorders. These are youngsters that may respond by committing sexual offenses, aggressive acts, and/or other aberrant behaviors.” The center had 87 beds.

     Visitation times were a couple hours on the weekend and Wednesdays. I was already worried that Mattie might be misdiagnosed. Why would we want to send her to a residential facility where it would be impossible to get additional testing or specialist consults? Why were they willing to ship a girl off to a residential psychiatric hospital for the indefinite future with no other reasoning other than “she’s stuck?”

     An internet search for Leesburg showed that, five months earlier, a fifteen-year-old patient had died after a guard performed a restraining hold. Two employees were charged with involuntary manslaughter. During the previous year, the facility had fired employees for pushing a patient into a wall, stepping on a patient’s head, and using restraints unnecessarily. All incidents were confirmed by video. 

     Dr. M’s notes that day stated the other facility “might be [the] best option” because the patient was “not getting better in this hospital.” Our insurance had begun to refuse to pay for our continued stay. Also, our plan didn’t cover the state-required educational portion at a residential treatment center. Our out-of-pocket educational costs at the places they suggested for long-term bedding were between $22,500 and $29,700 for a typical nine-month school year. We had gone from one of the top public high schools in the nation to a residential psych facility’s instruction. 

     We begged for neurology and endocrinology consults. We petitioned other hospitals to do a direct transfer in order to explore our growing medical concerns. Nobody wants to take responsibility for a girl stuck in inpatient psych. She’s a liability. It was impossible to transfer out of inpatient psych to a pediatric AE or PANS clinic. Where did we fucking go if no one would take her other than a residential psych facility that served to administer a cocktail of mood stabilizers, antidepressants, and antipsychotics and keep her subdued and suppliant instead of focusing on getting her well? There’s a fine line between diagnosed and discarded. 

Octopus mothers can live an unusual length of time in this state of starvation for the sake of guarding offspring. The longest observed octopus to mother her teardrop brood was a graneledone boreopacifica, off the coast of Monterey Bay, who guarded her eggs for fifty-three months before they hatched and she was free to sink into her own death. 

We continued to question the drug combination and asked them to wean her off some since none were working. The treatment center’s answer was to jack up each of the four psych medications she was on to their maximum dosage. She grew paler, skinnier, shakier, and developed a rapid heartbeat that caused the doctors to order ekgs of her heart to see if the drug combination was causing heart damage. I only learned of the ekgs after Mattie told me she’d had two. No one from the hospital told me. The veins in her palms bulged blue until nurses made notes in her chart. She profusely sweated with no exertion. She developed a cogwheel shoulder. It was getting harder for her to write or color as her hands shook. Her side effects had become seriously worrisome, to the point that I thought she might drop dead at any moment. What she had been unable to do – kill herself – the psychiatrists were going to accomplish. As I write this, there have been over 25,000 liability lawsuits against the manufacturer of one of the drugs they had her on, Seroquel.  The FDA stated that people taking Seroquel were much more likely to suffer sudden death from heart failure. 

     We’d grown desperate enough to agree when their hospital system’s refractory depression expert consulted and gave his plan for treatment that started with adding an anti-inflammatory, further investigating her endocrine system’s response, and ended with either ketamine infusions or electroconvulsive treatments in as soon as six weeks. At least he was considering her entire body and had a specific plan of action. However, the treatment center said it should be implemented elsewhere. When I asked why, Dr. M initially gave the example that their in-house pharmacy couldn’t fulfill the common anti-inflammatory. They admitted another facility might not be willing to implement their own doctor’s instructions. They had a meeting with their ethics department and claimed they weren’t obligated to follow any consultants’ recommendations. When our PANS advocate sought outside advice, they ignored that as well. Dr. Susan Swedo of the National Institutes of Health, the most revered researcher on PANDAS and PANS, confirmed Mattie needed a complete autoimmune encephalitis and PANS workup. The Duke board of their pediatric Brain Clinic requested a lumbar puncture, specific labs, and a brain EEG and MRI be done. The facility refused all.

Sannakji is a Korean delicacy dish made from the naki octopus, sometimes translated as “baby octopus” because of their small size. It is served raw and wriggling on the plate. Approximately six people die each year in South Korea from the tentacles grasping onto and sucking in throats, suffocating their would-be eaters. Restaurants post warnings to thoroughly chew before swallowing. Chances are higher for choking when the tentacles are chopped large or the entire octopus is eaten whole, a rarer but still observed custom. A sensationalized court case occurred after a man was charged with murder when his girlfriend choked to death on a live octopus he had purchased and fed her in their hotel room. The timing of a life insurance policy with him as sole beneficiary made the incident highly suspicious, although a superior court ruled that the circumstantial evidence was insufficient to prove guilt. 

A talented artist prior to her decline, Mattie spent the first few weeks inpatient covering pages with different sized circles. Now, the pages were filled with lists of negative thoughts and imaginative ways to kill herself. She wrote, “It’s too noisy. My mind goes a hundred miles. I can’t keep fighting much longer. Give up on me please. Nothing works. Everything feels wrong. I want to die. I need to die. I’m not strong enough. This is consuming me. I’m trapped in my own skin. Everything is gray. Every minute is the same. I have no future. I eat for others. I do art for others. I live for others. I wish I was never born. I wish someone else had my life instead. I’m so weak. I’m in so much pain. No one understands. I hate myself. I’m not getting better. I wear a mask for others. Every day is eternity. Why?”

     One page had faded blue circles radiating out of a center filled with purple lines and the heartbreakingly simple description, “I’m terrified.” Another page had “DIE” diagonally in orange and black increasing in size. Another was covered repeatedly with “Don’t wake up” in red. In the center she had written in blue “I’m miserable.” On another she’d written in purple, “Nothing’s working. My head is a hundred pounds. I’m hurting people around me. I’m scared of myself. I hate being around myself. It hurts. Everything hurts. I’m so tired. I need to give up.” Toward the end of her hospitalization she began to write everything backwards, a technique called mirror-writing. It’s common in stroke patients, especially if the left hemisphere of the brain was affected. She wrote her will backwards. 

     A PANS advocate helped us attain a medical malpractice lawyer who wrote the facility with our request to keep Mattie and treat her with their refractory depression expert’s treatment plan, which they still refused. Since it was clear, no matter how hard we fought, we weren’t going to get the help we desperately needed for our daughter within their walls, I scrambled to find a specialist who was knowledgeable in AE and PANS that would either admit Mattie to their hospital or, at least, give us a quick appointment. We needed a diagnosis and treatment plan. We needed hope. An out-of-state specialist who had confirmed that Mattie’s symptoms sounded like AE or PANS and needed urgent treatment, had refused to admit her to his hospital since they did not have inpatient psych. My second call to him was on a weekend. He was the neurologist on call. I pleaded with him to examine Mattie. He said he would see her Thursday. 

     Our lawyer’s original letter had declared we would hold the facility responsible if they discharged Mattie knowingly suicidal and she harmed herself or others. Now they hemmed and hawed, reluctant to release her to our care so that we could drive to the obtained appointment. I had our lawyer send a second letter saying we would take full responsibility. 

     After being inpatient for eight weeks, Mattie had grown dependent on the secure hospital setting and we had to convince her to leave. She requested handcuffs for the car ride and hotel. I ordered them online. On Thursday we drove from the facility parking lot in Virginia straight to the neurologist office in Maryland, where Dr. S spent an hour marveling at what little they had done. He said Mattie’s condition was clearly not just psychiatric. He was amazed at her demeanor and called her “sophisticated.” He said, “Follow me,” rushing out of his office and across the street to Sinai hospital. At the Children’s Diagnostic Clinic he set up a lumbar puncture for the next day. She needed IVIG and steroids as soon as possible. He ordered labs. He ordered an ophthalmologist consult to check her enlarged pupils. He ordered a CT scan, ECG, and 24-hour EEG. He cared for our daughter. Mattie astutely commented, “The psychiatrists had intelligence but not wisdom because they didn’t listen to me. Dr. S has both intelligence and wisdom because he listens.” She was not cured, but he initiated a path to recovery. 

Mythology shows the octopus in both the light of creator and monster. In Hawaiian folklore the octopus is the sole earth occupant to survive from a previous alien universe. Kanaloa is the octopus god of the underworld who teaches magic. Kuna people of Panama used a swastika (originally an amulet of good luck and long life prior to Nazi Germany) to symbolize their myth of an octopus that created the world. A Fijian legend claims that a mighty octopus defeated Dakuwaqa, the shark god, in a wrestling struggle and forged a bond to protect shipwrecked islanders from shark attacks. 

She read Coraline to me in the psychiatric hospital – a short chapter at a time. She had always hated that story. The button eyes freaked her out. Like the cutting, she said she read it to feel something. The parallel of a little girl trapped in a nightmare “other” world being read out loud to me by my mentally terrified “other” daughter was obvious. The demented love of the “other” mother frightened both of us. Life felt like a surreal landscape where the rules of reality no longer existed. There were no guarantees other than pain and confusion. I didn’t want to do this. When did the healing begin? People didn’t just lose themselves and never come back, did they? Where had my daughter gone? 

     Walking through the Maryland hospital for Mattie’s MRI, we passed what looked like a large baby crib, a bed with high metal bars. I joked that it was baby jail. We had been assigned a sitter, since it was a general medical hospital and not psychiatric. The sitter spoke of a woman she watched in an institution that was basically in a cage like that with plastic over the top because she threw feces. I locked my mind down. I didn’t want to wander the path paved with “what ifs” for my own sick daughter. I had already had panic attacks about Mattie being sent to residential bedding and never coming back. 

     At first, simply eating a bagel at a coffee shop was a success. We went to one Mattie had liked prior to that fateful day in February. A woman wrote quietly in a corner of the café – like I used to do. I envied her. What stories about us she might make up in her head…nothing nearly as drastic as reality. What did people think when they saw my daughter’s scars on her wrist? I doubted the woman would notice from where she sat – casually, calmly like the world was not imploding around us.

     After living a panic attack for three months, I felt numb, like I was wearing weighted boots that held me on the bottom of the ocean floor. Every once in a while, Mattie would have a good afternoon and I would buoy back up to the surface.

     We spent seven months forging ahead with IVIG, intravenous immunoglobulin  infusions, made from up to 15,000 donors’ plasma, but scheduling and insurance would push them few and far between. Standing in the hallway of Sinai Hospital that fateful day, Dr. S asked, “She needs IVIG, but insurance might give us a hard time. It’s expensive.”

     “How expensive,” I asked.

     “Each treatment is like…the equivalent of buying a small car.”

      “She’s been through enough. Go ahead with the infusion. We’ll deal with insurance later. She needs help.”

     The first few weeks, we handcuffed our daughter, willingly, to her bed at night. I worried social services would bust in and drag her out of our home and into an institution where she wouldn’t get the neurological treatments so needed. But, she couldn’t be trusted not to kill herself and we were so exhausted that we couldn’t guarantee we might not drift off and her pass us even as we still lay on her bedroom floor each night. I cannot emphasize enough how much we epitomized a “normal” family prior to that one night in February when it all went to hell. Our story could be any family’s story.

     We found a psychiatrist that we trusted and listened to us. He weaned her off the psych medications and found ones to add that aided the PANS treatments. Dr. S tried IVIG, different antibiotics, steroid bursts, and Ritalin experiments. Two weeks after the first infusion she was hungry for the first time since getting sick, but she was still not anywhere close to the same girl. My imagined visions of Mattie turning to me smiling saying she felt better, minutes after some magic liquid came down the IV line and entered her body, disappeared. There was no magic left. Healing took time. 

     We slept on the floor of her room and watched over her. For an entire school year she was homebound, trying to make up credit for three core freshman classes she’d been in when she became ill. The teacher came to our house twice a week for an hour. She was kind and not in a hurry. She taught us another lesson in patience and perseverance.      

     I couldn’t imagine ever being okay again. We craved normalcy. Sleeping in her bed without handcuffs – a success. Watching a fifteen-minute cartoon. Sitting half an hour with her new homebound teacher and not crying. Reading a paragraph of schoolwork. Much, much later being able to leave a knife in the silverware drawer. 

Octopuses have their share of negative portrayals, from the demon god Rogo-tumu in Tahitian legend to the infamous Kraken from Scandinavian tales, a giant beast waiting to grasp its prey atop the ocean waves and pull them under to drown. Stories of monsters have been told to try and explain the inexplicable. The Lusca in Caribbean tales is a fantastical creature made from a combination of animals, usually depicted as half-shark and half-octopus, although sometimes described as half-woman. They lurk near Blue Holes or the Mexican Cenotes, where human sacrifices to appease the gods once occurred. The Asian legend of Akkorokamui tells of a gigantic monster that can both heal and cause mayhem. Cast to sea and poisoned as punishment for causing destruction, Akkorokamui learns how to harness the venom as a weapon for its own protection. 

     Mythology captivates us with images of wild powerful octopuses, while the sheer reality of a creature with three hearts, blue blood, capable of transforming its color and texture, is in itself mystic. 

The next spring, we drove her to Maryland for Rituxamab infusions, an antibody drug used to treat Leukemia and Non-Hodgkin’s Lymphoma. A couple weeks later she began to sketch like before she became ill. 

     When we grew worried that the slow pace would never end, we revisited the refractory depression expert’s opinion that no matter what the cause, it was the depression that must be treated. He said her type of depression was seen mostly in people older than sixty. We teased her that even in depression she was advanced. She had a dozen electroconvulsive treatments before she was able to sleep in her own room alone – over a year from when her illness began. They switched the leads placement on her skull, added a caffeine adjunct, and cranked up the power. They played with getting the seizure length long enough to be effective, but not so long to cause horrendous headaches and nausea. Her mood started to lift and she gained a bit of relief. Her concentration slowly started to come back enough for her to at least watch short videos again. They began bi-monthly maintenance treatments until her 28th treatment got canceled due to the new coronavirus hospital measures. I fought for her to keep her spot in the governor’s school. The following school year she walked back into school, both an educational year behind and a lifetime past her peers. 

     They found my cancer a month after Mattie got discharged from the pediatric psychiatry center. A 3.5 cm mass turning my right nipple and invading lymph nodes. I blamed the stress of battling psychiatrists. Ten months earlier I’d had a clear 3D mammogram. I got chemotherapy for five months while Mattie was hooked up to IVIG. They gave me bilateral mastectomies and a seventeen lymph node dissection for the New Year. Still not able to stay home alone, Mattie sat in the parking lot and cried during my five weeks of daily radiation. I chatted with the other cancer patients in our gowns waiting to be called back, mentioning how concerned I was for my daughter left in the parking lot. I worried as they lined the red lasers up to the center of my chest, if she would still be safely in the car when they got done with me. 

     When my grandmamma called me to tell me she was dying, I was living in the middle of the country and was pregnant with my daughter. I told her I was going to give the baby her name. My granddaddy had borrowed a car and told her to get in, they were going to get married. They were both teenagers and poor. She birthed three children in the home with packed-dirt floors my granddaddy built for her. She had never gone to a gynecologist, until recently when she’d lost her appetite and they’d found her ovarian cancer. 

     Grandmamma said the dying didn’t scare her as badly as how she might handle it. She wasn’t used to hospitals. She didn’t want to cry and carry on. She wanted to die with grace.

     I wasn’t sure how I stacked up in the grace department either. It was hard to maintain grace during battle. I wasn’t sure grace looked the same to me as it had before this past year. Grace was no longer a quiet beauty. It had morphed into an ugly fierce creature with scars that don’t heal, throwing herself on the knife. 

     I yearned for my grandmothers. I missed my own mother, a state away. I missed my mother-in-law who had died of breast cancer. It didn’t seem fair, these organs that gave and nourished life could be the death of us. I wished for the comfort of mothers, yet I was too busy being one to linger long on wishes. Unlike the heroes of myth, a mother was the only creature I knew that would brave the deep, cold sea and all its dangers to unfailingly wave her arms over you, the sole survivor of an alien universe unwaveringly guarding and giving life. 

For more information on PANS visit:

https://med.stanford.edu/pans      

https://neuroimmune.org/patient-and-family-resources/ 

Sources: AFP News, “Acquittal upheld in S. Korea ‘octopus murder’ case;” Anomalien, “Lusca: St. Augustine and Bahamian cryptid,” Jake Carter; BBC Science Focus, “Octopuses: playful, choosy, and smarter than you think,” Peter Godfreysmith; Britannica, “Octopus;” Island Culture Archival Support, “The Octopus - a Fijian legend;” Journal of Applied Animal Welfare Science, “Octopus Senescence: The beginning of the end,” Anderson et al; Journal of Comparative Psychology, “Cannibalistic behavior of octopus,” Hernandez-Urcera et al; National Geographic, “Octopus cares for eggs for 53 months, then dies,” Ed Yong; National Institute of Health website; PBS Nature, “Octopus legends and urban myths,” Heather Toner; Smithsonian Magazine, “Ten Curious Facts about Octopuses,” Rachel Nuwer; South African Journal of Marine Science, “Autophagy in Octopus,” B. U. Budelmann; Wikipedia, “Akkorokamui,”  “Guna people,” “Kanaloa,” “Rogo-tumu,”