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.

Diagnosis, Anyone?

Option G, "Stella Starr"
Option G, “Stella Starr”

My illness is littered with what the doctors like to call uncommon traits, denoted intentionally as being “less than rare” but not unheard of for a diagnosis of schizophrenia, notably my age and the speed plus the severity of onset.

The age of onset for me was 37, which is not formally considered the “late onset” schizophrenia that occurs after the age of 40. Schizophrenia can occur at any age but there are two peaks for women: the late 20s and menopause in the late 40s. (Note, the age of onset is earlier for men and they don’t have a second peak.)

Signs and symptoms leading up to psychosis, referred to as the prodromal phase, can often be seen months or years in advance in most traditional cases. The symptoms I expressed prior to my psychotic break appeared approximately the week before and not previously in waves or in the traditional slow decline most commonly seen in schizophrenia.

Also, the severity in which psychosis struck me was notable. Now, some people get annoyed with the use of the word “struck,” claiming illnesses don’t actually “hit” people. I will tell you from personal experience, when the solidity of reality falls away overnight, it does feel as though you’ve been hit by an overwhelming and unimaginable force. I was instantly debilitated, unable even to read words.

Because of these two factors – my age and the severity of onset – I was given a positive prognosis for recovery. This seems counter-intuitive, but my recovery has been more than even I thought possible, though not less than I had hoped. I have returned to work and most of my faculties have returned to their near-previous states. What remains for me, the auditory hallucinations, seems insignificant to my psychiatrist now, who says what I experienced was not schizophrenia but a singular incidence of intense, long-term psychosis. Hence, I now have the diagnosis of Psychosis Not Otherwise Specified (NOS).

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.

The Game of Knots

A Games of KnotsMom sat at the kitchen table throwing down cards as if she were playing Solitaire, but he piles were jumbled as she sat there, staring at me.

“What are you doing?” I asked.

“I don’t know what I am doing! I’m trying to figure that out!” The words were pressured, impatient.

“What don’t you call it The Game of Knots?” I happily volunteered, for I had found  a secret to this madness and I wanted to share it.

Mom was supposed to be getting ready for work but instead she was looking at me, dumbfounded. I knew at the time she was trying to tell me this was how she perceived me: disorganized, directionless, chaotic. What she didn’t see was the piece of paper I kept moving around the house, and the knots I was making, placing each on something to make combined object-messages.

Knot+banana, I was not bananas.

Not+bell, I was not a bell, not able.

I was not able to explain what happened to me, I was not able to communicate what I was experiencing. Inside I was all tied up, confused, afraid, and very much alone.

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.