The world needs some formal training about mental illnesses and the lifetime of “people afflicted with these diseases suffer.” Truly, I’m tired of hearing “You have to understand it’s their culture to believe you just get over it” or “You can’t change anyone but yourself and your reactions.” Damn, I’m so freaking aware of these two things I could recite them if I was comatose.
Lack of compassion from said individuals is perfectly okay and something I should just ignore? When family members watch me take my medications at night and repeatedly say, “There you go taking medicines you don’t need,” it is a soul-shattering statement that translates as “You’re a druggie.” People who refuse to acknowledge that sleep is a huge component in mental healthcare; however, these people have attended doctors’ appointments, watched me spend a week in an inpatient psych unit, experienced me when I am at my worst and hallucinating.
In the years since 2015, and especially since 2018, I have worked my ass off to overcome multiple phobias and strengthen my mental fitness. Because I appear better a majority of the time, many think that means I am cured. Hear this: There is NO cure for extreme mental illnesses. There are only treatments. There will be relapses, this week has been one of the worst I’ve had in months, but instead of support, I get “You keep taking medicines you don’t need.” Here’s an idea, become a licensed psychiatrist and I will consider your recommendations at that time. What nobody understands is, by saying things like this, they are doing more harm than good.
Why you ask? Because I value this person’s opinion more than anyone else’s, I stopped taking many of my medications. Guess what, I’m willing to bet my guilt and stupidity is to blame for this relapse. MY guilt and MY stupidity. I know better than to try to take myself off medications, there is no one to blame but me, and what an ego boost that is.
I recognize many people do not know the harm they are doing by making these types of statements. Oddly enough, my psychiatrist is of the same culture as my family members, so the “that’s just their culture” doesn’t ring true to me.
Today, I am angry, hurt, and deeply heart-broken. I have nothing else to add.
I came to consciousness one early morning; confused and scared. A nurse called my name and sat me in a chair to do my vital signs. Other individuals, both men and women, wondered around a room with a couple of worn couches, one round table and another longer one sat toward the other end of the room. A counter placed against a wall held a coffee pot and water. Other than the nurses standing behind the nursing station, nothing clearly marked as to where I had slept the night with these strangers.
This room should have been familiar to me as I did my mental health nursing rotation in this facility, specifically, inside this room. Only after talking to my mother on the phone later did I realize I had been committed to the Pavilion, my city’s only in-house psych facility. No recollection of the several days leading to this point existed. Not after I talked to the nurses, the doctors, the counselors, or the patients. Not after I spoke to anyone in my family.
Sketchy pieces of memories from that hospital stay flashed–continue to flash–in my ungrounded mind. The things my family revealed to me frightened me to the core; however, the things other people have told me are suspicious. Skepticism lingers at the edges of my every move, peeking out here or there, like peripheral vision. You catch a glance of something too quick to identify before it disappears again.
What I have been told, that I do not remember, is I was found disoriented with slurred speech. I rode in the ambulance to the hospital where I stayed in the ER for a while. From there I was transferred into a semi-private room where my daughters stayed overnight with me. There are some flashes of this memory I recognize. However, apparently, at some point, and I don’t know when, I begged my family to take me to the cops so I could turn myself in. For what? Hell if I know. Upon my release from the medical hospital, I was asked if I wanted to be admitted to the Pavilion and I said yes. As my oldest daughter said, “That’s when we realized how sick you were.” Apparently, I answered all the “orientation” questions correctly and the healthcare workers diagnosed me as being in my right mind, so off to the Pavilion I went.
**The entire time I stayed at the Pav, nobody could convince me I wasn’t in some sort of experiment or job interview or reality TV show or a torture chamber. I followed the pack to groups, to meals, to bed. I never questioned anything aloud but boy did my mind try to solve all sorts of puzzles. Little arrows carved into tiny tiles on the floor led me to the bathroom and back to my bed again. A book I read said I needed to just lay down and die, so I tried to hold my breath. (Yes, I was a nurse and know you can only hold your breath until you pass out and then you start breathing again. I can tell you that at this time, on this day, as of this moment.)
**Everybody watched me, observed my every move, I actually thought at some point the patients were implants to trigger my paranoia. And, still to this day, I am unsure of what I experienced. The questions are always there, creeping and filling my head with doubt. Why was that one always on the phone? Why was that one asking me questions he already knew? Why did they sit outside my room at night and discuss me? How did paperwork from 2006 get hung up around the unit in 2015? So many questions that I don’t have the answers to and may never know the answers. Without a concrete memory, there is nothing tying me to the situation.
The attending psychiatrist found me to be partially catatonic at the Pav and wouldn’t release me until “I asked to go home with a smile.” This, I remember vividly. Maybe because I have never been so scared or wanted to go home so bad in all my life. Maybe because asking to go home and smiling seemed like an impossible fete.
I’ve seen my medical records from the medical hospital and know they also characterized me as catatonic. I also know I had not tried to commit suicide or overdosed on anything because I have my medical records from that day, and my medical records from the next several times I showed up at the emergency room. Only benzodiazepines showed up in a minuscule amount and since I was prescribed Xanax, it stands to reason that the test would show positive. I am afraid to peruse my records from the Pav because I’m not certain I will believe them.
**Once home, every sound bothered me. My husband’s video games talked to me. My dogs weren’t really my dogs. People drove by to check on me. The house was booby-trapped so I could only move and touch certain things. I always saw “messages” on the television. My lack of concentration kept me from reading. The fear of what I saw kept me from reading, writing, or much of anything else. People who called my phone were decidedly not real. Appointments magically changed dates. My family continuously played a game by moving their feet around.
And so much more.
Honestly, my family didn’t know how to communicate with me, so they side-eyed me, talked to me in soft whispers, and treated me as if I was truly insane. They all say they never met with one of my counselors, nurses, or doctors and were left in the dark as what to do with me.
These bouts of paranoia continue to plague me, though I am stronger now than I have been in many years, I recognize my thought processes and can usually turn them around before falling into Alice’s rabbit hole.
My last episode happened in May of this year. My husband knew something was off and so did my oldest daughter. I made a doctor’s appointment that brought about skeptical feelings. They wanted a urine sample and I was unable to give them one. Once we got to the emergency room, when they pulled me back three hours later, they plied me with normal saline and a urine sample was obtained. This incident nearly had me begging to go back to the Pavilion again. A place I promised I would never enter again as a patient.
So many memories. The scariest yet to come.
Maybe my most terrifying delusion of hallucination involved my sister and her wife who flew up to make certain I wasn’t being “a drain on society.” To make certain I was making some “positive efforts and functioning as a normal human.” They trapped me in my room threatening to take me back home with them where they would track everything I did on the computer, cell phone, or reading tablets
I’m not sure where this scenario came from, but, my sister and her wife had found a way to turn me into a piece of cloth that would blow with the wind and eventually, the cloth would deteriorate until I was, literally, nothing more than a piece of sand and my existence was erased from all of history. No birth record, no baptism certificate, no marriage certificate, no children, no husband–only a grain of sand. Nothing more.
When I come to my senses, I recognized how impossible it would be to turn me into a piece of cloth, but people, hear this; in the middle of a psychotic event, everything feels real. My sister and I don’t have an unhealthy relationship. We are friends, my family all just took a vacation and we stayed with them. Nothing abnormal happened.
To put all this succinctly, I was fucking scared. (I don’t apologize for the language, because come on people, there’s no other way to describe this experience.)
Again, this routine would return several times over the next few years; it still returns presently. There is a single commonality among every “episode.” I always have a urinary tract infection when these things happen. After over four years of this, I find that too pretty of a package tied up with a bow. I have read study after study talking about how UTIs can cause major psychoses but after everything I have been through, my brain refuses to fall for such an easy answer.
I’ve been free from these spells for over six months. While this is positive, there is also a tickle in my mind wondering when the next hallucinations will strike.
I am much better now. I can write about it and talk about it but most people don’t get my dark sense of humor. Every breath I take is another second of life that cannot be wasted.
*As I’ve mentioned before, the things I write are my experiences and mine alone. Each person in my family has their own stories but those I cannot tell.
**These paragraphs are filled with imagery and my experience inside a psychotic break.
My life is amazing. It is full of people who love and care about me, I’ve been married twenty-five years this month, I have two beautiful grown daughters–almost 19 and 24–who brighten my days, my parents are still married and support me in many ways, we own our home, two furbabies drive me crazy but make my days more enjoyable, we aren’t hurting for anything, save our son who died in 2003 at the age of five. This is the trigger that sets everything in motion.
A parent should never have to see their children die. Simply put, it just isn’t fair.
A parent’s mourning never ends and I wish I could say it gets easier, but for me, it hasn’t. Memories plague my mind. They also warm my soul.
Depression has always been a part of my adult life, even before the death of our son. However, the trauma and tragedy of his passing triggered an entirely different set of symptoms. My ability to continue on with life stopped. A year later I lost a great job, one I loved with all my heart and soul. Yes, I went on to get an even better job, but eventually, I lost that one too. This would become a cycle until the day I couldn’t fathom walking outside of my house and into a workplace.
The day DJ, my son, left this earth to meet his Maker I was taking a final exam for my Community Nursing course. I remember it as if it happened yesterday. We were presenting projects for our exam and the class ran late. Three of my best friends and I jumped into my car and headed for home. My husband called and told me I had to get to the hospital as soon as possible and provided very little information other than something was deathly wrong with our son. Without thinking, I turned on my hazard lights and stepped on the gas pedal.
Any police officers could follow me to the hospital and give me a ticket there.
We shot past cars, only stopping at a red light to let one of my friends out so she could jump in the car with her mom. She was heading out of town in just a few hours.
Even as I think about it now, my heart races and my stomach fills with pterodactyl sized butterflies. Horror washed over me as we entered the emergency room and were escorted to a private family room–reserved for the worst cases. My son had stopped breathing while taking a nap. The paramedics were able to restart his pulse but he had to be put on a ventilator.
Things you should know about my son:
He was born 15 weeks early, weighing 1 lb 5 oz.
His first home was the NICU unit at the trauma hospital. He lived there for three months.
His lungs were not fully matured and he spent about six weeks on the ventilator.
One of the ventilators vibrated fiercely to keep his lungs expanded.
This caused him to have a bleed in his brain.
At age 3 he was diagnosed with cerebral palsy (actually, we knew this much earlier but, at the time, cerebral palsy could not be diagnosed until age 3.)
His fine motor skills were the most affected. He rolled, crawled, pulled himself up on anything he could reach, he even climbed. He talked, laughed, and cried. He smiled and made friends with anyone he came into contact with, except his physical therapist. She made him work and he loved being babied.
With the brain bleed came many surgeries: the insertion of a VP shunt into his head to relieve any extra pressure, a permanent feeding tube, a fundoplication–a type of hiatal hernia operation–two more surgeries to replace the initial shunt and another to add a second shunt.
He had seizures. He had headaches. He projectile vomited for the first three years of his life.
Even with all of these issues, he loved fiercely and unconditionally. He taught us all many lessons about life. And today, as I write this, I am smiling at the memories.
My son always had an experienced caretaker near. If my husband or I weren’t home, he had grandparents. He also had, at the age of three, a personal assistant. I roll my eyes thinking how he twisted the two girls around his finger. One of the PAs had put him down for a nap ten minutes previous to my husband coming home and found him only minutes later.
To shorten this lead-in to the tumultuous times ahead, he walked into God’s arms that night in the spring of 2003. Our hearts shattered, our family shattered, my daughters suffered more grief than any child should.