My bread crumbs…

It took me a while but I eventually bought in to the sick brain narrative.  It was expensive getting there.  My initial (and only) psych hospitalization was somehow paid for with money left over from my college fund.  We’re talking six figures—money dealing that would put Oliver North to shame.  My delusions were so ingrained that those seven weeks were one long joke–soon I’d be exonerated even celebrated as the truth would be revealed to all.  Each morning I dovetailed to the New York Times expecting to see something on the front page.  This was a month before Election Day 1992 and the revelations of my convoluted family history could sway the result.  I was living a Tom Clancy novel.  It was actually kind of fun.

The high didn’t last forever.  The first blow came soon after I escaped from the hospital.  I had miraculously made my way from my Rye, NY suburb to FBI field headquarters in lower Manhattan.  The assassins were coming and I had to get out.  When the patient investigator, after listening to my long rambling tale, suggest this as something to be handled by local law enforcement I was crestfallen.  He could not be dissuaded.  In a daze I wandered to Washington Square, downed a couple 40 ounce malt liquors and called the hospital for them to pick me up.

From there the story is much more mundane.  Realizing I wasn’t going back to college any time soon and would instead be titrated on a special anti-psychotic drug Clozapine I became despondent.  The drug was presented with much fanfare and I was whisked away to a quirky upstate halfway house.  Schizophrenia was not a new diagnosis for me but it now felt quite permanent.  My prognosis seemed quite dour.  Expectations were greatly diminished.

I was treated like cattle by the onsite psychiatrist.  Talk therapy was provided but it certainly wasn’t a priority.  I surrendered to the idea that my brain had a chemical imbalance which the Clozapine sought to correct.  I exhibited both forms of schizophrenia–positive symptoms (i.e., hallucinations and delusions) and negative symptoms (i.e., catatonic demeanor and social withdrawal).  Clozapine was touted as revolutionary in helping with the latter which had historically been harder to treat.  It’s a pretty major drug which requires regular blood tests (I still have them 25 years later) and which led to serious side effects ranging from sedation, metabolic syndrome and weight gain.  Eventually the active delusions diminished.  Instead I settled into a chronic state of lethargy, resignation and disappointment.  While I showed steady improvement, never needing further hospitalization, my state of mind remained altered and I didn’t enjoy life.  Dreams of childhood and adolescence fell by the wayside.  My social circle tightened around others in similar circumstance.  I was too embarrassed to show myself to old friends.

My diagnosis was qualified as Schizoaffective to allow for the mood component.  I accepted the idea that my brain had a chemical imbalance which the medicine (I was now also auditioning various SSRIs) sought to correct.  My social and vocational advancements were proof that my treatment was working and I should stay the course.  I resigned myself to the idea that I would take this medicine for life, not to do so would recall my disease.  In a way that was comforting.  It absolved me (also conveniently my parents) from blame in the matter.  The common analogy was that my situation was like that of a diabetic needing insulin.

This remained my mindset for well over a decade.  Slowly though I became sensitive to what I perceived to be hubris in psychiatry.  Unpleasant symptoms were routinely ascribed “to my illness”.  Negative reactions, I had at one time ballooned to over 250 pounds and consistently overslept, were par for the course and not indicative of an invasive or poisonous medicine.  No one could properly explain to me exactly the mechanism of psychiatric drugs because no one actually knows (literature always prefaces with “is thought to…”).  I began to ascribe my recovery more to hard work and rigorous self-exploration than the pills I was ingesting.

Reading Robert Whitaker’s “Anatomy of an Epidemic” was the true epiphany.  In it he provided a scholarly study of the limits (and perhaps detriments) of traditional psychiatry.  I didn’t rush out and flush my meds down the toilet but it got me thinking in a broader sense of my history and prognosis.  It was empowering.  I began to believe in a resilient brain and discovered other narratives like mine that seem to puncture the medication for life sentiment.

Another special moment came from reading Bessel van der Kolk’s “The Body Keeps the Score”.  Disparate painful memories of childhood began to coalesce and I acknowledged the damage inflicted of long ago trauma.  My vision of recovery has become more holistic and my attitude much more hopeful.  Emotional responses are not foreign and un-definable.  I feel a sense of community with people.  Most importantly it has made me reflective and thankful.  I don’t blame myself or others for my circumstance instead I seek understanding and feel motivated to help others.

Part of that sentiment led me to starting nolongerlonely.com.  My most recent self-discoveries have motivated me to devote my full attention to it.  This blog provides the breadcrumbs for my story.  I plan to use this space to amplify my new understandings and you will see that the concept of socialization and peer support will be central.  I hope you stay tuned.