Holes In My Brain – Neesa’s Story

Proponents and advocates for the legitimacy of mental health’s existence often tout the following statement:

“There is a chemical imbalance in the brain, and one needs to take medicine to correct it. Would you ever tell a person with diabetes to stop taking their medication? Would you discriminate against someone with cancer? Of course not! So it is the same with mental illness.”

The most devastating reality of mental illness is that it compromises the quality of one’s life, stifling a person from realizing their full potential. But while the “chemical imbalance” analogy is easily touted, the internal experience of mental illness goes far beyond this statement, and is different for each person.

I spoke to a couple of mental health advocate friends of mine about the ways they perceive their experience with mental illness, as well as the relationships they have with their brains, so to speak. Their experiences are vastly different from one another:

“[I experience] a deep fog, a soup with a fast current I have to swim through.” – ML

“I feel there are shadows representing my depression, and that sometimes my synapses aren’t firing.” – PH

I have my own analogy as well:

“Mental illness is like being an amputee. There are holes in my brain, and my medications fill those holes. When I don’t take my medications, the holes come back, and I am unable to use my brain the way I need to in order to live a fulfilling life. I need my medications, as much as an amputee needs a prosthetic leg in order to run freely.”

For many years, I felt feelings of shame and stiflement due my condition.  It began when I started taking violin lessons as a small child. While I was passionate about performing, I had a short fuse when it came to patience and discipline with practicing. I avoided this as much as I could. This might seem mundane, but it worsened as I got older.  As a pre-teen, practicing caused panic attacks and teary depressions, so I avoided playing as much as I could. The vibrations of the strings underneath my ear seem to trigger something in my brain, which even today I know not of its source.  I was previously diagnosed with hyperacusis, a hearing condition that makes me sensitive to certain frequencies of sound.

For college, I attended a prestigious conservatory with hopes of enjoying a career as a professional violist. But still, practicing was torture. My brain seemed to progressively degenerate, and badly. By graduate school, I developed Schizoaffective disorder (a combination of schizophrenia and bipolar disorder). I had to drop out of school, forever abandoning a performance career. When I tried to return to school to become a classroom music teacher, psychosis again struck. In 2011, I resigned and went on disability, prepared to live a life of unemployment and dependence on food stamps and monthly SSI payments.

This is when I truly started to feel like I had holes in my brain. Deep down, I knew I was a creative person with musical and poetic inspiration swimming within my soul. But whenever I tried to write a poem or a song with my guitar, my thoughts would suddenly disappear, seemingly hitting up against a wall. No amount of emotional effort could break through this wall, so I just gave up trying. I could only manage to write a song maybe every two months, or maybe a spurt of a few days where I’d write three songs. I felt angrily stifled. This blankness of mind I experienced was the sheer face of everything I hated about my mental illness.

I was furious that the medications I took did not fix the holes. While they did eradicate my maladjusted behaviors and delusions, it did not feel as if the holes were filled in. It only felt as if a sheet of metal was placed over them, so as to make them aesthetically disappear. Unbeknownst to the world, my holes still remained, and even grew deeper underneath with each passing year. I still thought I was the reincarnation of Beethoven at times. I still was too volatile to hold down a job, and too paranoid to feel happiness.

My life radically changed four years ago, when I started taking Clozapine. I began this medication in December of 2012, during a long stay at an inpatient psychiatric unit. My initial failure to improve caused psychiatrists to confront me with the possibility of long-term hospitalization.  But then Clozapine did its magic, and I was able to leave the hospital after three months.

I was still fragile after discharge, and spent all of 2013 in rehabilitation programs. Slowly, my medications restored me to sanity, allowing me to achieve an even higher level of mental wellness than that I had experienced before it all began. Fatalistic thoughts I had since childhood left me, and I finally felt “normal.” This was a feeling I had never felt even in childhood.

Clozapine has destroyed the wall.  Clozapine has filled the holes in my brain.

For the first time in my life, I am able to hold down a full-time job without fears of being fired. It has been over two years now!  I am also able to enjoy a constant, unstifled flow of creativity, which I express through writing. Poetry helps me channel my abstract, sometimes nonsensical thinking. I share my experiences and insights on mental illness by writing essays for online publications.  This process helps me to accept and embrace my past turmoil. My sufferings have not been in vain. Such I am compelled to believe.

I am still dependent on medications, but I no longer feel ashamed. I have come to peace with this present reality, and am not inclined to forget my past. On the occasion when I forget a dose of Clozapine, my mind begins to revert to what it once was. When I sit down to write, fingers at the keyboard, I feel that wall again.  It feels as if the parts of my brain which I use as a writer is missing. Gone. No matter how hard I try to use them, there is only empty space. This is why I liken my experience with mental illness as that of an amputee. I feel as if parts of my brain disappear when I do not take my medications.

Those of us with mental health conditions are often thrust onto the road of self-discovery. Speaking from my own experience, I felt compelled to “search for a cure” due to my personal sense of competitiveness. Why are others happy, but I am not?  I approached my illness as an intellectual quest, analyzing my every thought and behavior both through journaling and talk therapy. It is this sentiment that allows me to now understand the nature of my illness as I personally experience it.

Psychiatric diagnoses are formally defined and classified in the DSM-5, and yet these definitions only scrape the surface of the whole mental health experience. An afflicted person feels not only the indicated symptoms, but a whole amalgam of feelings, emotions and intuitions that are not sufficiently described by clinical language. Artistic expression can help people to describe how they experience their conditions. Doing such can help people feel more understood by others.The creative process also affords an opportunity for a person to get to know themselves better.

We are very much in the infancy stages of discovering the details of mental hygiene, far behind what we know regarding physical hygiene. I believe that the concepts of creativity and self-exploration can hold answers for effective treatments for mental health conditions. The first step lies in allowing people to creatively define themselves and their experiences.

Our Peer Support program services can be accessed over the phone at 403-297-1402 or through email at peer@cmha.calgary.ab.ca.