Shedding a Light on Stigma

6ghZ86KLiving with the stigma of Schizophrenia is pretty daunting. Trying to date and talk openly is impossible. Sharing your condition with co-workers is unthinkable. Even talking to family and friends can lead to off-the cuff and insensitive remarks. I feel like I carry with me this huge secret, and I don’t like that feeling of living a double life – the life inside and the life I present to others. Having to constantly monitor my words in every facet of life is nerve wracking. I just smile and laugh, but in reality, the hidden truth weighs heavily on me.

Stuck in this feeling, I wrote the President asking he make a National Awareness Day for Schizophrenia – you see, in America, there is none. Schizophrenia is the second leading cause of disability here, but we don’t even acknowledge its existence. I thought perhaps shedding a light on this and related illnesses at the National level could help garner support for my own personal cause and the plight of many, many others who struggle with symptoms daily.

I took the time to write President Obama about this lack of National Awareness. While I was out and about, dating and enjoying the summer sun, I completely forgot I had sent the letter. Then comes in the mail, this huge package from the White House. In response, he sent me a printout of his recent proclamation declaring May National Mental Health Awareness Month. Though not exactly the win I was hoping for, he clearly heard me – one little voice among so many. I’ll keep trying!!


Cigarettes and Smoking Spells

They are teaching me how to smoke — not just light up and inhale like the neighbor kid taught me — but to use a cigarette as a magical tool. Smoking is a sacred act, a secret act. I am being taught how to smoke so that I can share the knowledge, not to become a smoker as an end in itself.

There aren’t just the smokers, there are categories: there’s the smoking smokers, those who smoke people with their magic cigarettes. There’s the non-smoking smokers, those who smoke people by other means. The non-smoking non-smokers are the most peaceful, or conversely, those who have smoked so many they are no longer allowed to smoke. I fall into the final category: the smoking non-smoker, for I am learning how to smoke, so my cigarette is nothing more than tobacco and filter. A benign habit.

The smoker will always smoke on the left side when smoking someone. I hold the cigarette away from the body to keep the effects as far away from me as possible. Every action while smoking can take on meaning, but there are some universals.

Throw it down, crush it, I want no part of this.

Toss it out the window and let the life burn to its natural conclusion.

One crush…

Two crush, three crush, four. Each has significance. Since I am learning still, I put out the ash instead. Poke. poke. poke. poke those cinders away. I am not ready to crush my opponents, my foes, my enemies. I’m not allowed to smoke them until I’ve matured, until I’ve become a magician myself.


Delusions Versus Voices: A Quick Distinction

I’ve had two delusional episodes since my initial break in 2008. Though I haven’t fallen into deep psychosis since my first break at the age of 37, these delusional episodes are completely disruptive of my life. These episodes are different and distinct from my “new” average daily life of hearing voices.

The voices themselves don’t bother me, whereas the story lines of delusion do. The voices I can disregard through diverting my attention, concentrating on anything from music to reading or surfing the internet. Conversely, delusions are invasive, pervasive. Listening to the voices alone is interesting and I think it is exactly because I can tune in and tune out. Like listening to an overheard conversation in a cafe, someone may be saying something funny or obnoxious, and not knowing what you will hear is a part of the interest.

Delusions are no more predictable than voices, but for each person there is often on on-going theme. For some it is religious, as in institutionalized religion. For others voices are spiritual in nature — ghosts or angels, spirits or demons talking. The altered senses may be  extraordinary perceptions for others. The story line of my delusions centers around magic, magical beings and disembodied persons who speak through me.

Delusions are separate and distinct from the hallucinated voices. Webster and the DSM would have us believe that delusions are “a belief in that which is not real”. I would say they are more akin to a personal experience so extraordinary and intimate it is doubtful anyone else could relate (except, perhaps, in fictionalized narrative story form). I’ve come to believe anyone would have my same reaction to what I hear and feel during my delusional cycles. It’s in the hearing 24/7 that makes you believe it is real. You simply cannot escape.

My anxiety level reaches top notches when I am delusional, based again on what I hear: the world of magic seemingly rests upon my shoulders, it is a fight between chaos and order (not good and evil, per se) and only my day-to-day actions and habits can help those disembodied souls and spirits who accompany me. Twice now I’ve had this experience since my diagnosis in 2008, with the same results: I become enveloped in an impenetrable, mysterious world and not much in this reality matters. Luckily I’ve managed to keep my job though these episodes.

This is not my personality — being some extraordinary savior — before psychosis set in. That’s delusion. I have to laugh because it all sounds so absurd when I far away from in, grounded in common reality. When “in flight” it is such a disparate reality, that I try to reconcile in my mind because it is at complete odds with my reality. “How can this be true?” See, it feels so real.

Are my extraordinary perceptions real? They sure feel that way when I am in the thick of it. Should I make changes in my life based on what I hear? What can I do to make a difference in my life, make a difference for these lost souls?  I think these are questions every schizophrenic must deal with, and since the delusions never stop for most, our behaviors become erratic and disconnected from any thread of consistency, making us seem, well, mad.

The voices I tend to believe the beings behind them are real, while I don’t take their words too seriously. For delusions, it is the opposite: I don’t take their personalities too seriously, but their stories are deadly real to me. At least until the meds kick in again. To me it seems there must be different mechanisms for delusion and auditory hallucinations and I can see why outside observers can’t distinguish between the two. It’s even too hard to describe from the inside out.

In essence, I can choose what I believe to think about the audibles, but for delusions, when I am in that space, there is no choice: I believe and I am encompassed.

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).

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.