I am a decade-long survivor of false imprisonment and abuse in the mental health system. I am reaching out to organizations such as pyschrights and Seth Farber’s mindfreedom after trying and failing to get my story told and recognized in my small community in Northern California.
Teenaged Onset and My First Experiences with Stigma
For the first time since I began showing symptoms in 2003, I am now being seen by a primary care provider for my “unspecified seizure disorder.” I have always known my emotional and behavioral issues have stemmed from something neurological, but as a 13 year old growing up in a small farm community in Colorado, I was never able to specifically ask for help with it. My first symptoms were compulsive breath-taking and hand-twitching. My mother brought me to a local child therapist who told me I was imagining things, and anxious. I found it difficult to talk to the therapist due to my habit of ‘zoning out’ when people talked to me, something I now understand as absence (petit mal) seizures. I was also diagnosed with tourettes, OCD and ADD and struggled in school due to attention deficit.
Since I was told my symptoms were psychogenic, I set about learning to control my facial and body contractions. I hated myself for the times that I couldn’t control it, and became fairly anti-social to hide the symptoms I felt responsible for. My mind gradually split into pieces and I developed problems with rage and suicidality. I cut myself frequently and made my first suicide attempt in 2007 after my hand-twitches and facial tic got so far out of control that I couldn’t handle the self-loathing and embarrassment any more. It was my first experience on 5150 in Humboldt County’s mental health crisis unit (Sempervirens) in California. Since I was a minor, I was locked in a small room with a bed and a camera and an older man who sat near my bed all night. These guards are referred to as “StarGuards,” commissioned from American Star Security Corporation. (This part may be edited out as the evidence is only circumstantial: I have information that StarGuard may be a front for an organized child pornography ring associated with Boy Scouts of America in Martinez, CA. They were fully operational in the early 90’s and I do not know if they are still. Denny Peterson of Stockton School District was probably a major organizer – now a PE teacher who was recently filmed battering one of his students).
In between the suicidal gestures, rage, and general issues in school, I was placed on 5-10 different medications as a teenage including Effexor. Effexor caused severe and consistent myoclonic jerks as well as insane out-of-body experiences and compulsive grabbing movements. As usual with akathesia, I was told it would get better with time. I eventually stopped taking the medications cold turkey when I went into University a second time in 2008.
With the support of my friends in school I was able to live with my symptoms for several years and make progress towards my degree. It was only near the end of my school career that my symptoms started taking over again. I would have severe attacks of abdominal crunching, twitching hands and face, racing/repetetive thoughts and compulsive thoughts of suicide. My memories of these times are hazy, and difficult to bring up due to the trauma I experienced.
Sempervirens: Humboldt County, CA
My best friend brought me to Sempervirens because she wanted me to get help with my suicidal thoughts. These thoughts are incredibly difficult to admit to and even more difficult to admit to their cause, which was humiliation over loss of motor control and difficult controlling my bouts of depressive/obsessive thinking which are related to my absence seizures. At first, they refused to admit me because I didn’t explicitly say I had a plan to kill myself – because I didn’t, I only had recurrent thoughts about it – I knew I wanted to live and that’s why I was asking for help (duh). But they manipulated me into saying I had a plan to kill myself, admitted me to Sempervirens (SV) and from that point I became a “child of the system,” so to speak. I confused the things they made me say with things I actually felt. I was given ridiculous amounts of Lorazepam (benzodiazipenes) which smoothed out my tremor but caused days/weeks-long memory lapses in which I acted totally erratically. The staff at SV gave up even making an effort to get me home after discharging me; I often found myself wandering the streets, 7 miles from home, with no idea where I was and no recollection of how I got there.
Suicide attempt: #2
Eventually I gave up hope too, and didn’t want to end up back at SV, so I took the entire bottle of Lorazepam the doctors had given me. Witnesses (friends, paramedics) say I then tried to walk to my friends house but started having seizures on my neighbors front lawn. EMS was called and I woke up in the ICU several days later to my parents’ faces. I had a catheter and a 1-to-1 babysitter. For some reason I had severe metabolic acidosis and hypokalemia, and the doctors told me I must be bulimic. I explained that that was ridiculous and that worked on two different farms at the time and if I spent all my time throwing up I would pass out or waste away. Obviously they didn’t believe me, and the metabolic issue was never addressed.
My parents, who were vehemently opposed to me going back to SV, had me transferred to St. Helena’s Mental Facility in Vallejo for over a week. There I was forced to undergo severe Benzodiazepine withdrawal with no medical aid except a very small dose of seroquel at night. I remember convulsions
wracking my body for several days, and my heart rate was consistently over 110 (it is usually about 70). I was locked in the “quiet room” with padded walls and a camera until I “calmed down.”
Silver Hill Mental Facility
After Vallejo my parents sent me to Silver Hill mental hospital in Connecticut. At this point the doctors at SV had come to the conclusion that I had Borderline Personality Disorder (BPD) due to my returning to their facility so many times, which they saw as attention seeking. Dialectical Behavior Therapy
(DBT) is the supposed wonder-cure for BPD and so my parents had me committed to Silver hill for a minimum of 30 days. Predictably, the residency program didn’t go well at Silver Hill. While my parents complained constantly about their $30,000 going down the drain, I tried to make sense of having been shipped all the way across the country to “get better,” being placed on SSRI’s, Abilify, and Trazedone and dealing with their akathesia and somnolent effects, and did I mention that Hurricane Sandy hit, which completely wiped out power for the hospital and the entire hospital staff’s homes?
I thought the DBT program was a sham since their therapy program was comprised entirely of AA/NA meetings and “mindfulness activities” like blowing bubbles or drawing pictures. After 28 days my hopelessness and despair grew and I was deemed hazardous to myself yet again and sent to their maximum-security (Acute Care Unit) lockdown facility for another month. I had a bed surrounded by cinderblock walls, a private bathroom fitted with anti-hanging devices and which constantly leaked a putrid feces odor from the toilet. There was a small hallway with a window at the end facing the forest which I spent hours staring out of. There was also a day-room with several tables, a couch, an
exercise bike and a television. This was my prison for over a month. I received even less medical/therapeutic attention than I had before. My treatment consisted of my crazy “doctor”
approaching me for about 5 minutes once every few days to say things like, “so, you still gonna go kill yaself?” I wised up and would insist that I had no suicidal thoughts or plans and just wanted to go home, for the love of god. Her typical answer was, “Yah lyin,’ and ya gonna be stuck hyah forevah.”
Easterners… I wasn’t stuck there forever though. They kicked me out the morning after my insurance refused to keep paying for my stay. That was a six A.M. taxi ride alone to the airport and a six hour flight alone to the airport in my hometown. I walked a mile down the road to where I parked my car two months previous, and it was completely covered in mold.
I returned from Silver Hill with determination to keep myself out of the system. And I succeeded for a while, held down several good jobs and hung out with friends. My mental health faltered again after my roommate and friend Jason Lovell (http://alturl.com/kxtr9) killed himself after getting chewed up and spit out of SV. I found myself cycling in and out of SV again, addicted to Ativan again, and acting pretty maniacally. I once escaped from a hospital ER after taking a handful of benadryl to “make the thoughts stop.” I apparently got also into a car accident I forgot about.
Incarceration & Criminal Charges
Because I had woken up so many times in SV, sometimes tied to the bed with people sneering at me, with no idea how I got there, I came to the conclusion that the people at SV were “after me.” I was so symptomatic I could no longer do my job, and wanted to go to the ER but feared going to a hospital anywhere near SV. So I drove North – I got all the way to Coos Bay, Oregon where I entered the ER and gave them a fake name: Dylan Lovell.
Bay Area Hospital in Coos Bay admitted me to their psychiatric ward, where I refused to eat their food or appear to be “looking for a place to stay” in any way, since I had already received that stigma. At that point I was calling my episodes “brain-seizures” and wanted desperately to tell people what was going on and get help. Unfortunately no one ever approached me to ask why I was there. A doctor came in to tell me that I wasn’t in their medical database and that they knew my name was fake and that I wasn’t cooperating. I had written notes about my brain-seizures and taped them to the wall, hoping someone would read them since I wasn’t given the opportunity to speak.
At 11am on my second day in the hospital, I was approached by the group therapist. She calmly spoke to me about my problems with “reality checking.” She said that I was paranoid in thinking that the police were coming to get me and take me somewhere bad. She said she thought I was hearing voices, even though I never said I was. But she offered to come back at 1pm; I would give her my real name and medical history and in return she would get me some ‘real help.’ We made the pact and the mysterious woman went on lunch break.
At 12 noon, a different nurse came bustling in with my clothes. She threw them on the bed, told me to change and “get out.” The doctor then came in and handed me my discharge papers, on suspicion of being ‘un-cooperative.’ At this point my seizures were severely triggered, and my only response was to walk up and down the halls saying, “they said they would help me,” over and over again. Every time they tried to interrupt, I would say it louder. I never became combative or dangerous. They called the police and had me arrested for trespassing, and I went with them quietly and cooperatively.
I was cuffed, driven to the the Douglas City jail, isolated, booked, and harassed. The officers started throwing nuts and me and on the ground, telling my arresting officer his “nuts were getting away.” They treated me like I was retarded. I later paid a lawyer $1,000 to appear for me in court and I’m not really sure whatever came of those charges. They’re the only charges on my criminal record now besides reckless driving – I’ll explain that in a minute.
After I was released from jail, I drove like an idiot to Roseburg, OR and walked into another ER and collapsed on the floor. I was again taken to the psych ward, admitted to Mercy Medical’s psych ward, and locked in a room with a camera and a table. I crawled onto the table which only had a thin sheet and a pillow, sucked my arms into my shirt and put the pillow over me for warmth. I awoke several hours later to a woman ripping the pillow off me and throwing it against the wall. She was screaming, demanding to know “what the hell are you doing here,” “why did you come here,” and “what kind of stupid-ass name is Dylan Lovely anyway?” The screaming and the desecration of my recently deceased friend’s name caused me to start crying, quietly, on the table, and she screamed “if you don’t stop crying, I’ll strap your ass to the bed and forget about you.” This woman had me imprisoned a full day, and refused to let me call my family. I was finally able to call my father but she kept yanking the phone out of my hand and screaming at my dad about what a “liar” I was, and that I was “hospital surfing, looking for a place to lay the head.” My dad convinced the woman that he may sue if she didn’t change her attitude, and suddenly a different nurse appeared. I was then driven via medical transport to Medford to Hallmark mental health wing, where I stayed for about four days. On the last day, they released me with Propanolol, saying there was “nothing they could do for me.” At least nobody screamed at me there. They put me on a greyhound – still in my scrubs and in shoes they found which were 5 sizes to big and without food. People on the bus joked about me being a nurse, I guess because the hospital scrubs looked like nurse scrubs. One kind man was nice enough to see that I was a patient and bought me some Taco Bell. I left California immediately, got a job as a wilderness guide and began learning about the most important equation for someone with neurological problems:
- (trigger=episode=impulse) + compulsive action = hospital
- trigger + impulse – action = normal life
Fort Collins Nightmare
My next episode occurred in Fort Collins, CO. After my first season as a wilderness guide I was attempting to move into an apartment in a region that was undergoing severe flooding. All housing was reserved for refugees and I ended up sleep-deprived, hungry, and homeless, but not without money. And so I ended up in the mental health system yet again, this time with repeat visits to Touchstone Mental Health in Fort Collins.
At this point my tremors, shakes, twitching, dementia (confusion) and outbursts of rage were completely uncontrollable. I was living with the stigma of Borderline Personality Disorder, so any attempts to talk about my muscle contractions was met with disapproving looks, accusations, and stacks on stacks of freaking breathing exercises. I went through a severe dystonic reaction to neuroleptics in which my extrapyramidal movements completely crippled me. When the ambulance dropped me off at Poudre Valley Hospital, I was given 1mg Ativan for the reaction and forced to leave. I didn’t want to leave and felt scared and seizure-y, but they pushed me out the door in a hospital gown at one in the morning, again several miles from my home and without transportation. I was also placed on Cogentin, a so-called “anti-tardive dyskinesia” medication for uncontrollable jerks and mouth movements.
Depakote and/or Geodon and/or Ativan caused me to have sudden and frequent absence seizures (petit-mals, staring spells). My tongue and jaw became leaden and uncontrollable and I was experiencing visual flashing and extreme somnolence. I drove to Touchstone to complain about all of these symptoms, and they told me I was “just looking for a place to hang out.” They gave me directions to a homeless shelter and told me to get going. So… I got in my car and drove. I had an absence
seizure and drove directly into oncoming traffic. I don’t remember the car accident, and I don’t remember how I skipped from being in an accident to being in Mountain Crest Behavioral Health for a week afterward. But I’ve read my admission to Poudre Valley ER, and this is the official report:
Cheif Complaint – Patient presents with:
HPI 23 yo WF presents to ED with anxiety after being involved in a minor MVA with minimal damage to vehicle and no injuries. Pt recently admitted to Mountain Crest (10/3/2013). The medications she was prescribed are not helping her currently. She wants to go back to Mountain Crest. She complains of her heart pounding and some mild neck pain.
My insurance has payed out over $5,000 in vehicular damage and bodily injury to the two other drivers involved in the accident, and they are currently suing for more due to extensive spinal damage that one victim received. My car was crushed completely on one side, totaled, and dragged directly to the junk yard. I complained constantly of severe, relentless shoulder pain. I said it felt like they were coming out of the sockets, which I imagine they did during the crash.
This made me homeless, jobless, and carless.
After the crash I got an apartment with a nice guy, but still melted in and out of calling suicide hotlines looking for help with stomach contractions and pain (I thought they were panic attacks); they would tell me to go to the ER; I would go to the ER, get screamed at, get 1mg Ativan and be sent away in the
middle of the night. My father often sent the police to my house for random “welfare checks.” which stressed my living situation. I decided to get tested for Autism after taking an online Asperger’s test.
Excerpts from my Autism writeup, NeuroDevelopment Center of Colorado
Vico received inpatient care at Mountain Crest during the course of this evaluation. She reported that she was hospitalized due to “sensory overload” (e.g. overly bothered by noises, lights, confused thinking, and rage. An automobile accident prompted the second hospitalization. Hospital records indicate that she was treated for approximately one week for symptoms of psychotic disorder, mood disorder, and borderline personality disorder). Vico is currently without stable housing and reported that she is unsure she will be able to live “like an adult.”
Vico reported unusual sensory experiences, aggression, rage, confused thinking, headaches, and self-stimulating behaviors (e.g. body rocking, looking at shiny objects). She denied racing thoughts or decreased need for sleep.
Vico was referred to the local community mental health center in Fort Collins post hospitalization. The intake therapist indicated an initial impression of Borderline Personality Disorder due to Vico’s emotionality, anger, and confusion. Records from the last two years from the community mental health center in Pagosa Springs, CO [Axis Mental Health] indicated sporadic mental health treatment. Clinical records indicated that Vico sought an Autism/Asperger’s diagnosis [at Axis] and that her suspiciousness made her treatment difficult.
At the time of intake, Vico was reportedly prescribed Depakote, Ativan, and Geodon.
During the initial intake session, Vico presented as anxious, confused, and disorganized. She expressed distrust of the mental health system. Vico reported that her visit to the local mental health center was challenging. She stated that her medication regimen made her feel confused and likely contributed to the events leading up to her auto accident. Vico reported that the medication rendered her unable to talk clearly to the intake therapist at the mental health center. She stated that she would like to conduct a study of women who have been diagnosed with borderline personality [like me, Vico] and test them for autism spectrum disorder [or other neurological disorders] so that she can publish results in journals [I said good experimental master’s theses are published in journals]. Vico expressed a strong desire to fix the “broken mental health system” and to be an advocate for others. [These were later interpreted as “delusions of gradiosity”]
During the testing sessions, Vico continued to display anxiety and confusion. As she acclimated to the testing environment, she appeared calmer and more focused. Vico became tearful and agitated when discussing her immediate future and expressed anxiety regarding how to secure food and housing. When agitated, she displayed voice and hand tremors, body rocking, desire for comforting objects, and she requested dimmer lighting. When this examiner called the intake therapist at the mental health center to coordinate care, Vico expressed anger towards the mental health center therapist. Although Vico appeared agitated at times, she was respectful towards the examiners in this clinic.
Throughout the evaluation, Vico was talkative and expressive. She sustained attention and was compliant with examiner requests. Vico appeared to put forth her best effort on all tasks. Overall, results are considered a valid reflection of Vico’s neurodevelopmental status.
The difference between her performance on the Verbal Comprehension Index and the Perceptual Reasoning Index was statistically significant and renders a Full Scale composite inaccurate.
Verbal Comprehension Index: 98th percentile
Visual and spatial reasoning reasoning abilities: 68th percentile
Working memory: 82nd percentile.
Processing speed: 30th percentile
Vico was administered the Wisconsin Card Sorting Test to asses frontal lobe functions such as planning and set-shifting. While she was able to grasp the general concept of this test, she found it challenging to sustain her attention and engaged in self-talk to keep herself focused. (…) Though the process appeared effortful at times, she was able to engage in successful problem-solving strategies. Overall, Vico’s executive functions were assessed within the normal range.
Behavior and Social-Emotional Functioning:
Vico appeared anxious during the administration of the ADOS. She looked down at the table during the majority of the session. Vico spoke rapidly and with a flat intonation. She freely shared a great deal of information regarding her experiences and difficulties. Vico often provided more information than was needed. It was difficult to follow her description of non-routine events as her speech was often tangential.
Vico appeared anxious when asked to engage in creative activities. She was observed to have a slight tremor in her voice and she rocked back and forth slightly during these tasks. These behaviors were most noticeable at the beginning of the session and gradually decreased as Vico acclimated. The majority of her conversation focused on the difficulties that she is currently experiencing. This preoccupation is expected given her current situation. Vico frequently drew on the table with her finger or rubbed her stomach and arms while speaking. This appeared to be a coping mechanism for anxiety as opposed to a ritualized behavior.
Vico reports feeling confused, emotionally labile and angry. She indicated that she has difficulty thinking and concentrating. When in crisis, Vico experiences episodes of impaired judgment and deterioration in reality testing. This may include unusual perceptual experiences, magical thinking, or delusional beliefs.
Impressions and Recommendations
Axis 1: Bipolar I disorder, Most recent episode depressed with mixed featres, with anxious distress, and mood-congruent psychotic features
Axis 5: GAF 30 [Defined as: Behavior is considerably influenced by delusions or hallucinations OR serious impairment in communication or judgment (e.g., sometimes incoherent, acts grossly inappropriately, suicidal preoccupation) OR inability to function in almost all areas (e.g., stays in bed all day; no job, home, or friends).]
Vico has researched Autism Spectrum and raised many good points regarding her own thoughts and behavior during interviews. As we find with other bright adults who have struggled with personal relationships and adaptive skills, it is understandable why she requested we explore this possibility. After completing a comprehensive evaluation; however, it was evident that Vico’s reciprocal social communication, insight into emotional experiences, range of interests and capacity for empathy are more advanced than that of adults on the Autism Spectrum.
I decided to let go of getting a diagnosis for whatever was wrong with me. I moved back to California with some friends January 2014, quit taking pills, and have been suicidal thought-free, med-free, and hospitalization-free since October 2013. I allowed my body to do what it needed to do, which was to seize (myoclonus) every morning for about two hours. I developed methods of anxiety control and continued my career as a wilderness guide.
I started using cigarettes as an emotional crutch in 2014, but I got my degree, thank you very much. I received a Bachelor of Science and performed an Honor’s Thesis complete with experimental field design. Career-wise, I’m well-respected within my field.
On Dec 27, 2014, I fell snowboarding at work and hit the back of my head. My work was demanding and I didn’t go to the ER until around midnight that night. They gave me narcotics and sent me away. A month later, I had my first grand-mal seizure. I collapsed several times before anybody noticed and then fell backwards trying to get on the bus to work in the morning. I seized for several minutes and was transported by ambulance to the ER. Gunnison Valley Hospital in Gunnison, CO apparently contains no doctors who know anything about neurology/seizures, or so they told me. I wasn’t given any medication, treatments, or referrals, and made to walk two miles back to my house. I filed a complaint for negligence, which was reviewed and dismissed.
After the first grand mal, I stopped calling for help when they happened. I had two more this Spring, along with countless absence seizures and persistent myoclonus. I finally quit my job due to the hazard I posed to my clients on July 5, 2015. I went to the Mad River Hospital ER in Arcata, CA on July 29th 2015 and got a patient advocate to help me get attention for my seizures. They immediately confiscated my driver’s license but told me to get myself to a doctor’s appointment on Friday. The “doctor” they referred me to was nurse practitioner Vicki Fowler of Mad River Health Clinic (previously Humboldt Open Door Clinic). She performed some sort of exam where she pressed on my stomach and declared I needed an ultrasound, not EEG’s/MRI’s. She said I was “crazy if I thought I was going to get a referral to a neurologist.” She told me my posture was “horrible,” and that I needed to purchase a book from Amazon called “How to Fix Your Own Neck.” I told her I was unemployed and didn’t have cash for books, and she decided that I was “just looking for pain pills,” and told me to “get the hell out of her office.” Guards were summoned. My current partner tried to speak up for me, but we were both forcibly removed. I then collapsed and had 3 grand mals lasting 5 minutes each on the sidewalk outside of the ER department/Mad River Health Clinic. Doctors and nurses were apparently walking by, unconcerned, and the guards only stood by uncertainly for a while before leaving. Finally, a receptionist from a different clinic came out to offer us some water, and referred me to my current primary care physician.
Where I am now
I am currently supporting myself with savings, using friends for rides to the grocery store and post office. I’m going through the hoops of qualifying for state-sponsored insurance and food stamps. I’m working with the patient advocate to get my $5,000 “mental-health” bill expunged from my record. I’m not taking narcotics, and I’m unable to work. I have an appointment for an MRI but have yet to get accepted as a patient by any neurologist. My lack of a diagnosis makes my family doubtful and unsupportive. I seize for about 4 hours a day in the morning and at night.
I appreciate any feedback you might have on my story, as well as any resources you may know of that I can contact for legal/emotional support. I’m wondering if I have any sort of case for negligence with any of the previously mentioned institutions. I now also suffer from severe PTSD as a result of the trauma I experienced in the hospital, and have never considered going back to the mental health system for support. As a high-functioning and gregarious adult, I have an extensive community of loving friends across several states whom I rely on for emotional support, but I’ve never met anybody with experiences similar to mine. I hope to connect with people who understand.
Thank you for your time.