There is something indescribable about feeling completely and utterly alone, despairing that you may never live a normal life again, never see your family again (except in heavily supervised settings), never read a book or draw or write intelligibly again, and never have clarity of thought, feeling, or mind again. It is the anguish of knowing you may die alone in a facility many decades from now, far past the point when everyone you have ever loved has completely forgotten about you despite their best efforts to remember who you used to be. I have had those feelings and thoughts, having spent a month in a mental facility being told that no one had a clue what was going on with me, and that they could not in good conscience release me for fear that I might harm someone else or myself. Having been in that place, I now get sick to my stomach every time I realize that there are countless others less fortunate than me who are doomed to a life of loneliness, confusion, anger, and despair at the hands of an otherwise indifferent system.
Long before this experience, at the age of 21, I was diagnosed with OCD. I’d been having intrusive thoughts about harming others and about potentially killing myself as a last resort to prevent this uncharacteristic and unwanted violence. This led me to check myself into a mental health facility for one week. My OCD diagnosis led me to take a semester off from college and enroll in a three-month-long, intensive outpatient program for OCD. The program met three days a week for three hours a day and focused on Cognitive Behavioral Therapy (CBT) including Exposure with Response Prevention (ERP) and group therapy. The mental freedom that I gained from the program was revolutionary, and I would not be the functioning adult I am today without it. I also tried a few different medications, working with my psychiatrist, and landed on Prozac, which I have taken ever since. I later met the love of my life, graduated from college, went to graduate school, got married, and started my career. I am now 37 and have a four-year-old son with my wife and a position as a high-level design professional in a large East Coast City.
Three years ago, in December of 2017, I went upstate with my wife and son to visit my sister and her family for the holidays. I had forgotten to bring my Prozac for the seven-day trip and so on the fourth day, I started to have withdrawal symptoms including lightheadedness and tracers in my vision. I was able to get an emergency supply from a local pharmacy and while there also bought some DayQuil and NyQuil. Everyone in my sister’s family had a bad cold, and I had gotten it, too. The next day or two were a blur of sleep and taking medicine. On the night of December 30, we all sat down to watch the movie I, Tonya after the kids had gone to bed. Later my wife would discover I had accidentally taken seven doses of DayQuil in less than 24 hours (the maximum recommended is six). It is also quite possible I had taken an extra dose of my already high dosage of Prozac that day.
Several scenes into the movie, I started to feel like I was communicating with the movie through mental telepathy. I excused myself to the bathroom. I then felt time and experience separating into individual “frames” like a movie projector reel. It seemed to me that each frame was a branch or fork in which infinite alternate realities awaited me. Simultaneously, I became aware of the presence of the experiences of all of human life. I had the sense that I was standing on the edge of an enormous precipice, as though I could see all of existence at once and realized that I and everyone in this world at this moment are standing right next to the exact center of all things, all time, all existence, in a never-ending cosmic whirlpool. While in some ways mesmerizing and fascinating, the feeling was ultimately terrifying. I wanted only for it to stop, so I walked quietly over to my wife and said, “I think I’m having a problem.”
Shortly thereafter my family decided, and I foggily agreed, that it would be best for me to get medical attention. I was driven to an emergency room in the city. After my wife explained to them my history of OCD and my medicine intake over the last few days, I was admitted to the psychiatric emergency room, or CPEP, for the night. One image I will never forget is that of my wife registering everything happening to me that night and the tear rolling down her cheek as she said goodbye. To the misfortune of us both, she was not allowed to stay with me, and she would have no contact with me for another 14 hours. I spent the rest of the night wandering aimlessly around CPEP and falling deeper and deeper into confusion and delusion. The next morning after little to no sleep I was interviewed by the on-call psychiatrist, who got nothing out of me but a stupid grin and me repeating the word “reality” over and over. I was immediately prescribed Risperidone, an antipsychotic, taken off of my Prozac, and admitted to a ward.
Next, I remember “waking up,” though I hadn’t fallen asleep, alone in a drab patient’s room with a full-length window overlooking snow-covered houses. I had no idea what was happening or how I had gotten there. When I finally remembered that I had a son, I began to panic as my paternal instincts told me that he could be in some kind of danger. I desperately looked for a way to escape, eventually finding my way out of the room (I couldn’t work the doorknobs at first) into a larger hallway where I was told by a nurse to go back to my room. Having no idea what that meant, and in a panic to get to my son, I took action. I found a common area with similarly large windows, backed up into another patient’s room, and sprinted as fast as I could at the window, jumping at the glass with all my might in an effort to escape; we were on the fifth floor.
Thank God for strong glass.
I was not hurt except for some bruising and a small scrape on my right leg. I was taken back to bed and possibly given a light sedative. I collapsed and fell asleep until the evening. When I woke up, I felt completely fine again and was totally aware of the madness and confusion of the past 24 hours. My sister and wife met with me during visiting hours, and we discussed everything as I sobbed and tried to make sense of what had happened and what might have caused it. Since this hospital considered my recent actions to be attempted self-harm, I was told I would be held indefinitely, though if I had no further symptoms, I’d possibly be let out in a week or so. Feeling as though the worst was over, I resolved to make the best of the time with reading and drawing and said goodnight to my family.
Due to the weekend and the New Year’s holiday, I was on Risperidone for three days before I finally saw someone in charge. That person was Connie, a nurse practitioner, with whom I immediately got off on the wrong foot when I asked to see a doctor. She refused, stating she had been assigned my case. I had requested this because I had become aware in the last three days that I was otherwise back to normal except for becoming increasingly confused and “foggy.” It had gotten so bad that I could no longer focus enough to draw, read, or even write more than a few scrawled, incomplete sentences. I never got to explain any of this, however, as Connie dismissed me after five minutes. In hindsight, I was probably confused, slightly irritated, and my sentences were disorganized, so I assume she felt she had observed enough and that I was still having the same problem for which I was admitted. Connie refused to hear any more from me that day, setting the tone for all of our future interactions.
On day five or six, Connie came to see me again in the morning for our daily five-minute meeting. I was extremely confused and disorganized, barely able to speak, and terrified because of it. I ran out of my room when I saw the social worker, Deb, walking by, who had been the one person thus far who had treated me like a human being. I babbled something in the way of “Please, help!” Seeing I was in great distress, Deb held my hand as we walked back to my room. I somehow made it clear through random words and frantic gestures that I wanted to speak to Deb only and wanted Connie and any other nurses out of my room. Deb said it was fine and Connie begrudgingly agreed.
Deb had me lay on my bed and take deep breaths, but after a few minutes, she said she had to leave. I walked out of the room after her, trying to tell her she was the only one who could help me, though unable to bring words from my brain to my lips. I was quickly restrained by about five nurses who pulled me to the ground, where I sat sobbing, babbling, and trying to say anything that might help. After an internal struggle with my brain, I finally shouted to a nurse, “You never look any patients in the eye because you’re afraid to connect with crazy people!,” an observation I had made about that particular nurse since I’d arrived. It was a huge moral victory for me because it was the longest complete sentence I had said all day. I’ll never forget the look of horror on her face, or the triumph I felt in my heart.
That night, though I could barely hold a thought in my head, I resolved to stop taking the Risperidone. I suspected it may have had something to do with my confusion and inability to speak, though I was not sure. At medication time, I refused to take it from the nurse. Connie happened to be working late that night and she soon approached me to discuss it, or more accurately, to bully me, as I was unable to reasonably discuss anything in that state. Nonetheless, I tried to stand my ground, shaking my head and crying. Connie reminded me that I was being held because I had thrown myself at a window and that I was still acting strangely (I instinctively felt the two might be unrelated, but I had no way to prove it). She threatened that if I didn’t take the Risperidone voluntarily, I’d likely be held even longer if my condition worsened, which she assured me it would. I’d also be further detained from seeing my son, and I’d be forced to take the medication anyway. This hit me in my most vulnerable spot, since getting back to my son was all I cared about or could even (barely) focus on. So, sobbing quietly, I took my medicine.
During the first two weeks, I continued to have my daily five-minute meetings with Connie, where I begged to be taken off the Risperidone and to be put back on the Prozac with whatever focus I could muster. I tried desperately to explain that I feared my OCD would worsen. However, Connie told me several times that what she was seeing was not OCD—that a person with OCD would not have such a cluttered and messy patient room. At around the two-week point, she told me that my OCD diagnosis of 13 years was “fake news.” It was then that my father (who’d been visiting every day) and I decided that we needed to act somehow to get me off of the Risperidone. Since I had arrived, my dose had been tripled as my “symptoms” became more pronounced. By the end of the two weeks, even my doctor half-suspected I was having Risperidone side effects and finally brought the dose back down to the minimum again. With the help of my father, in a meeting in which I was unable to sit still because of muscle tension and agitation and barely able to produce a clear thought, let alone a full sentence, I compiled a description of the missteps I felt had occurred in my treatment with the intent of appealing to a judge to have me released.
The next day, I met with the hospital’s attorney and asked to be seen immediately by the judge.
However, after meeting with my father again, Dad and I agreed that I was in no condition to illustrate my sanity to anyone, so we decided to wait a week (court appeals were done weekly). It was a holiday that Monday, and I worked myself up into such an angry panic that I demanded to see a doctor. Connie was luckily out that day, so after jumping up and down in place and shouting “I want a doctor! I need a doctor!” I was finally able to convince someone to call the on-call doctor.
He examined me and immediately diagnosed me with akathisia and “NMS-like symptoms,” which included extreme agitation and mental confusion. NMS is short for Neuroleptic Malignant Syndrome, a possible side effect of Risperidone, though I was never told that by a medical professional at that hospital, or ever. The most I was told was that it appeared I might be “allergic” to the medicine, as though it was in some way my or my body’s fault and not a known side effect of the drug. I was immediately removed from Risperidone and put on a Parkinson’s Disease medication to combat the akathisia. The next day, a nurse told me during a daily wellness check that my resting heart rate was below 100 BPM for the first time in two weeks (my normal resting heart rate is usually 60-70 BPM).
Upon my own independent research much later, I found that NMS accounts for every symptom I experienced in those two weeks after being admitted, including fever, akathisia, elevated heart rate, agitation, and restlessness. It is also potentially fatal.
Some scientists believe that dogs do not perceive time; that they are forever stuck in the current moment. My experience from that point forward was much the same – I felt forever stuck in my present moment, which included agonizing discomfort, panic, and frustration, and the constant and desperate need to search for something to relieve those feelings. I begged daily to be put back on Prozac. Though my mind was starting to clear, I was now experiencing the worst OCD symptoms in my life in addition to the still-constant muscle tension and agitation. I began tapping my hands, pacing constantly to the point of painful shin splints, both unable and afraid to sit still for fear that the still unexplained mental confusion might come back with force. I became terrified of germs and saw them everywhere.
Nobody seemed to care. I was threatened by one patient who said several times he would kill me, and bullied and mocked by others for my constant pacing and my general look of terror all the time. With a few kind exceptions, the nurses and staff dismissed me and took any claims of panic or distress as false alarms. They told me to “deal with it.” I was given no anti-anxiety medication despite constant insomnia and panic attacks; to this day, I cannot fully understand why, though Connie seemed to indicate at the time that she thought I might be a drug seeker and she did not want to release me on any “heavy” medications.
I had slept little since I arrived at the hospital, averaging less than five hours a night and sometimes less than an hour. But in the last week or so before I was released, I barely slept at all, getting 30-to-60 minutes here and there throughout the night and never during the day. In the 72 hours before my release, I did not sleep at all and, in fact, spent the entire time relentlessly pacing, calling my father in a panic on the public phone, and compulsively taking showers in a failed attempt to relax (I took 10 or more showers my last night in the hospital).
The way I was finally able to gain release from the hospital was questionable at best. Through a combination of continued threats to see the judge (I was now coherent enough to speak, though extremely jumpy, sleep-deprived, and irritable), denial of thoughts of self-harm (though contemplating suicide was the only thing that brought me any cosmic relief), and a false reassurance to Connie that OCD was never in my past—“You’re right, Connie, I’m beginning to think I might have never even had it”—I was able to essentially con my way out.
I have never felt more like a criminal than I did when I left that place. It felt like a prison break. Sadly, upon returning home to my wife and son that evening, I had the worst night of all. I became terrified that I posed an immediate physical threat to my family, so I spent the night pacing and talking to my father on the phone yet again. The next day, after spending three hours in an emergency room, I was admitted to another CPEP. Through careful negotiation involving discussion about my mistreatment at the hospital upstate, confirmation of my choice to stay as completely voluntary, description of my symptoms as clearly OCD and extreme panic, I was admitted and finally issued an anti-anxiety medication: Klonopin. But my admittance to yet another psychiatric facility after barely escaping the previous one could not help but feel like the clear and bitter end to any hopes I may have had for my life.
Luckily, my despair did not last long. A nurse gave me my first dose of Klonopin, pushed my head down gently onto a recliner, and I finally collapsed into sleep. Eleven beautiful hours. To this day, I think about how good that night’s sleep was; I slept beyond oblivion to a realm of complete and total stillness that I hope to God to experience when I die. And the relief the next morning was like being reborn. I still had trouble staying still the next morning, but this time it was out of the sheer joy of knowing that I might actually make it through this nightmare alive and be able to rejoin my family.
I spent the next eight days at a suburban facility, where a team of doctors and nurse practitioners met with me for 30 to 60 minutes every morning to discuss my treatment there, my mistreatment upstate, my extreme OCD and panic symptoms, and how to properly recover. I essentially had what I’d call “cycling obsessions” at that point, meaning that from one moment to the next I jumped from fears about my actions to religiosity to fear of contamination to inappropriate thoughts, and on and on. I was finally discharged to an amazing, private anxiety outpatient clinic in the city where I still receive services every two weeks.
It has taken me close to three years and a 10-week PTSD intensive to finally be able to live with my memories from the hospital upstate, which for months had come back unwanted in the form of flashbacks, sleepless nights, bouts of intense anger, and feelings that left me in varying states of panic, depression, and general stuck-ness in my own mental prison. Even now, these memories are very difficult and cause me intrusive thoughts about my responsibility in the whole thing and how it could have been prevented. Despite all of this, I feel compelled to speak out about my experience. Now more than ever, I believe that one’s right to the truth and to freedom from persecution due to reasons beyond their control are at stake. I sincerely wish never to feel that alone again, and that no others will have to experience the hell that I have.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.