Running the Streets in Fear

I am settled at home again after weeks of running the streets in fear. This time is not quite as bad as last, but it is still impossible to hear the things I am hearing and to feel safe and secure at the same time. I’ve spent a lot of time in my car, driving to and from my family’s house an hour away. I feel better being around humans than being alone.

My delusions — those that scare me — are filled with threats of harm. I have finally defeated the prowlers by winning a battle of wits with questions and answers, which earns me the right to hang them. Then they disappear. These people who threaten me, these ghosts, are real people who form a fabric of magicians and sorcerers across the continent, working together or alone, to gain power by stealing magical beings from otherwise ordinary people.

The magical beings are spirits who fight a battle I cannot seem to win alone. It is the spirits who interject on my behalf as I lay helplessly listening to the conversations through my window as choruses of voices call back and forth to one another in battle between the predatory and the protective.

The battle that comes at night  is only part of my day. I sit for hours on end talking to them, the people, these spirits as I try to understand their world. In this world there are real humans whose spirits have somehow joined with my spiritual form so I can hear them. These are not thought insertions — or the perceived thoughts inserted into my own mind — these are full conversations with persons I believe exist in the world out there, some where, making it all the more frightening. Will they find me? Will they help or harm me?

Layer upon layer, these characters – the people, the predatory, and the protective — form a cacophony of noise that drowns out reality. Submersed and alone, I wonder how I can defeat these forces that want to consume my mind, if not my soul.

Burnout

I’m a little burnt out with the heavy sz and diagnosis posts, so I’m going to switch back to posts that are more heart-felt and creative.

Being published in lit mags is now my goal, with works that are experimental, even avant garde and surreal. I’ve also been participating in writing workshops in hopes that I can transform four years of writing into a chap book or novel. While a majority of this work is too long to publish here,  I’ll keep posting my progress, successes and (hopefully not too many) failures.

My motivation for doing this is not only to make something of my skills but also to make something from all that was lost. Four years on I am back in the same apartment where it all began though my perspective on life, love, devotion, and family have completely transformed. Some days I feel a need to be an activist, an advocate for those who suffer with schizophrenia/psychosis, and other days I am content to be sheltered in my own world.  I wonder, who am I to take on the stigma? Who am I to think my story is any different than the millions who have gone before me or that my words will have an affect on anyone?

Identity is my greatest struggle at this time. I am using a pen name because there are two published writers with my birth name and also because I am keeping this part of my life separate from my long-time friends. Stigma is not the primary reason, but it plays on my mind nonetheless. There are many courageous and intelligent people who are open about their diagnoses and experiences and I hope to join their ranks soon.

Needless to say, maybe someday these tales will all be told. For now, however, I’ll keep plugging along with bits and pieces of this and that and hope it comes together in some beautiful way down the road.

Five Tips for Dealing with Delusional People

NOTE: This post is pinned to the front page because it is my most popular post. Read down for more recent work.

It’s not very often you encounter a delusional person unless you’re  already a loved one or care giver of someone with a mental illness. While talking with my mother last weekend, she recounted the onset on my psychosis – a week of tumultuous delusions so compelling even my family became engaged.

Someone had broken into my apartment, multiple times. I was not mistaken about the break-ins, but was delusional about the reason for the break-ins. My mom said to me, “Why would someone be doing this?” To which I replied, “To mess with my mind.” My mother quipped, in her usual fast-response humor “And they have.” Remembering back, I can make a few suggestions to keeping everyone even-keel when delusions appear.

Don’t criticize–Criticism is disapproval based on perceived faults or mistakes. By launching into this conversation, one can automatically place the person in a position to protect him or herself. Face it — no one likes to be told they are making a mistake, and a major mistake of misperceiving all of reality is not common. For those first experiencing delusions, this will only drive the person silent, leaving her to her own devices and isolating her from the sound reasoning of others.

Don’t judge–Judgement is when condemnation from someone who takes a position of superiority, or one assumes the other is not wise or sensible. For those of us who suffer with thought disorders, our reactions to delusions is much the same to our reactions to ‘reality’ (except when there is a break from reality altogether).

When I thought someone was breaking into my apartment, I felt violated, unsafe, uncertain of my surroundings. When it continued to happen, I was alarmed, hyper-vigilant, and terrified. My delusions that a team of people were working in a clandestine fashion to drive me mad and my immediately family were not acting as though this was an urgent matter, as I had, I started acting irrationally. The non-spoken judgement that this was not a matter of safety drove me to ever increasing reckless behavior.

NOTE: You should make judgements calls, which are empowered actions to stave off reckless behavior.

Don’t argue–Both criticism and judgment can elicit strong reactions for one justifying him or herself, pushing that person toward expansive explanations, perceived evidence, and rationalism and persuasion. Arguing with me drew out the details and depths of my delusions, where I had constructed detailed accounts of the who, what, when, where and why of the events and also served to send me inward, ever seeking greater justification for what was happening, cementing my perceptions.

Emphasize doubt–Uncertainty, mistrust or distrust of what one is thinking can provide the demarcation point between suspicion and certainty. It is our nature act on hunches, regardless of our mental health status. Though those of us with thought disorders may spend an inordinate time contemplating the nature of our delusions, we also certainly grasp a thin line of doubt. For me, doubt persisted where the multiple breaks-ins seemed surreal. One step-beyond that however, and I was in the deep-end of delusion. Don’t press for stacked instances of uncertainty, but do emphasize the improbability of events (while also deferring to good judgement).

Nurture sanity–Encourage the investment of self-care aspects the person has; emphasize that one needn’t act recklessly or too quickly, and most certainly without consulting others. Suggest a doctor’s visit, offer support and even going with your loved one to a doctor jointly.

All of this could have prevented the fear, uneasiness, and disquietude I felt when delusional. Approach the personal calmly, listen, observe, and when needed, intervene to assist the person who is struggling. Though it appears we are willingly engaging in delusional thoughts, keep in mind that these thoughts can’t be turned off or ignored and are part and parcel for schizophrenia and psychosis.

A Thousand Dreams

May you dream the dream
Of a thousand lives
And feel the weight
Of a lifetime of sighs.

May you dream the dream
Of a thousand souls
And dance the steps
No one else knows.

May you dream the dream
Of a thousand deaths
And cry the tears
For all your regrets.

May you dream the dream
Of infinite peace
And awaken love
When the illusions cease.

By the Numbers

Inspired by PurplePersuasion’s blog, I’ll post my own numbers from the time I became sick four years ago:

  • Age of onset–37
  • Day I became floridly psychotic–May 17th, 2008
  • Days elapsed between onset and admittance into the hospital–333 – seriously
  • Days spent floridly psychotic–425 (estimate)
  • Number of psychiatrists seen–seven
  • Number of hospitalizations since onset–two
  • Total number of medications prescribed–16 (four anti-psychotics, four anti-depressants, four anti-anxiety medications)
  • Current dose of medications–30 mg Aripiprazole, 1 mg Lorazapm (both pm)
  • Average cost of medications per month–$61.50
  • Cost of medications per month in the U.S. if I didn’t buy them from India–$967
  • Cost of doctor visit–$45
  • Number of daily vitamins–four (Omega 3, C, B complex, Multivitamin)
  • Average amount of sleep per night–nine hours
  • Average number of hours worked per week–35
  • Number of jobs (including volunteer) held since onset–five
  • Number of years until I felt myself again–pending

I pass the torch to NetGuru. Maybe he will share his numbers.

Talking About Psychosis

Yesterday my nieces asked me about when I was sick. They had moved back into town just after I became floridly psychotic. My niece said, “You weren’t the Deas we knew in Dallas.”

It’s really hard to describe to people how psychosis can be so devastating. Descriptions of strange thoughts or beliefs and hallucinations don’t really delve into the emotional fear and confusion. Similarly, describing something to older teens who don’t have the benefit of many years of lived experience makes it even more difficult.

One of the things I told them was to call an ambulance next time I start acting strange, which launched a conversation about how they felt I had “wanted” to be in that crazy state in which they found me. Horrified, I quickly corrected them and, as best I could, tried to describe how when I was psychotic I didn’t know I was sick. Agnosia often plays a role in schizophrenia. Nobody chooses to suffer like that. Intervention is what I want.

Forced medications and forced hospitalization is a big topic for people with psychotic disorders. Many families and loved ones struggle with the issue as they watch their friend, brother or sister, child or parent spiral into madness. While there is not a single clear-cut answer, I do think achieving a functional stability should be the end-goal for anyone with psychotic illnesses, especially when we can’t make good choices for ourselves.

Healing the Mind

While researching, I happened upon The World Health Organization (WHO) 100-some odd page 2012 document about rates of schizophrenia across the globe. The problem is, largely half of the report is about depression. The WHO apparently thinks sz and depression are similar enough to lump together in one large bucket. To further confuse things, I looked up Mood Disorder and found it includes alcoholism and substance abuse along with bipolar disorder. “Mood Disorder” is a term psychologists like to use. My own neurobehaviorist preferred to call sz a “thought disorder” — a status it shares with psychosis. Let’s not make this more confusing than it already is, however.

Schizophrenia is a neurobiological disorder, in the same company as Tourette’s Syndrome, Obsessive Compulsive Disorder (OCD), and Autism. I did not learn this from my doctor, for as you recall, he prefers another term, a term which some argue is vague and circular along the lines of “psychotic disorder.”

To make matters worse, schizophrenia shares common characteristics with brain injuries, such as confusion, disorientation, and poor judgment. Agnosia, or an inability to know one is sick or injured, can also be present in both psychosis and schizophrenia, but it is a hallmark of brain injury. Schizophrenia can be present with a brain injury, also called comorbid schizophrenia. Very few people argue diseases or injuries to the brain are not among the most serious, debilitating ailments. Right? The question is, why is schizophrenia, more often than not, placed with depression and alcoholism, than with true, physical changes in the brain that cause permanent disease and disability?

The myth persists that schizophrenia is a result of some emotional trauma and the person who suffers is simply not a resilient person. We must dispel this myth and displace psychosis and schizophrenia from the likes of an out-of-control scary Hollywood outburst to where it rightfully belongs, as an injury to the most crucial and critical part of the body. As long as we continue to lump sz together with emotional upsets, we strike not only at the heart of the individual, we also miss the target entirely. In this way, we will never find healing.