Thoughts About Compassion’s Effect on the Mental Illness Experience

I have been a recipient of mental health services since I was ten years old, due to depression instigated by domestic discord. And right from then, I figured the major principle of the therapeutic process: tell everything on your mind, so as to be honest and thorough. Most of the time, I have been received well in therapy. I am verbally articulate and intelligent, and so therapists enjoy working with me. Even in my worst times, during psychiatric hospital stays, I have been considered as “highly functioning,” and a favored patient by doctors.

I have enjoyed staying in the nicer of hospital units in New York City. Following ER visits, I have been sent to New York Presbyterian’s units in both the East Side and in Westchester. I have been to NYU Langone Medical Center’s psychiatric unit twice, where I enjoyed art therapy twice daily, five days a week. My final hospitalization was at Long Island Jewish Zucker Hillside Hospital, and it was this place that best rehabilitated me to functioning normalcy. After a two-plus month stay, four years ago, I am now steadily climbing higher and higher towards recovery. I hope to never return again, but if circumstances force me to, I will again gladly accept the help as an inpatient.

I realize that my inpatient experiences have been overwhelmingly positive. I have never been shipped off to scarier places like Bellevue Hospital, or to any state institutions such as Creedmoor Psychiatric Center. It was only my last hospitalization (the seventh), when I was required to follow up by spending a year in an outpatient treatment programs. (Note that an outpatient program is often full-time, thereby disrupting one’s ability to work or attend school.) After previous hospitalizations, doctors did not mandate me to attend any outpatient treatment programs.. Instead, they gave me permission to return to my previous engagements, uninterrupted. Many times, I really was too ill to continue, but doctors gave me the benefit of the doubt, overestimating my capacities.

It disturbs me then…if I am offered benefit, then who is not? Why me, and not others? The truth could be as scary as blaming it on race and socio-economic status. I myself am of mixed heritage (half Nepali/half Caucasian), and come across as an olive white person. I do not bear the brunt of institutionalized racism. I also have a devoted mother who has caught me every time I fall. When I was unable to support myself, she provided me with food and shelter. Although my father was abusive to us in my childhood, my mother fought back by providing me with unconditional love. This gave me a fighting chance.

By no means is my small family wealthy. My mother and I struggle merely to remain in the middle class. Yet she always gave me the very best. She paid for me to have violin and viola lessons, and I became skilled enough to receive a bachelors degree in music performance from a prestigious conservatory. When I was suicidally depressed in middle school, she scraped pennies together and put me in a private school. Whenever I was hospitalized, she would visit me every single day, for weeks on end.

I am so lucky, it’s ridiculous. I don’t say this to be arrogant, but rather to make a point. If I did not have this support from my mother, I would not have had the clean clothes on my back. I would not have had a place to return home to after discharge. Instead, I would have been shuffled into the public assistance system, ending up in a homeless shelter. I’d get into public housing eventually, forced to live on a shoestring budget, perhaps in an unsafe neighborhood.

What if my circumstances were switched, and I did not have my mother to catch me when I fall? Would I be sitting at this desk right now, typing out this article? Would I be mentally lucid enough to organize my thoughts, in a way that allows me to impart my experiences in a sensical manner? Would I be as pleasant to look at? I remember five years prior, when I was living at home with my mother, with only a disabled future on the horizon. I was obese, unable to keep down a job, and at times convinced that I was the reincarnation of Beethoven. And while my skin’s shade may have then still been what it is today, skin color does not determine how sick one can become. Mental illness can affect anyone.

I work at a mental health agency now as a peer specialist. My agency provides services and housing to people with mental illness disabilities, and I specifically work at one of their housing offices. We have apartments in the community that our clients rent, and we manage that whole process. As for being a peer specialist, I relate to clients by remembering my own experiences, and then using that wisdom gleaned from experiences in order to empathize.

Aside from my mother’s support, I still have had the experience of being on subsidized health insurance (Medicaid and Medicare), receiving food stamps (EBT benefits) and also monthly SSI disability payments. I know what it’s like to wait on lines for hours with a ticket number in my hand. I know what it’s like to have a bank account in someone else’s name. Little things like this really help me understand the day-to-day living of clients.

And yet I see so many people suffering. Suffering because they don’t have the support of family. Exhausted, because they have been shuffled through the system for years. Hopeless, due to having numerous hospitalizations, thereby impeding a person’s capacity to hold down a job. How is a person expected to fully recover, when these barriers become insurmountable?

In my experience, New York City offers excellent psychiatric care to those who are disabled and on public assistance, in comparison to other parts of this country. I remember living in Indiana when I was in college, encountering psychiatric professionals who were only really able to manage depression. Once I developed schizophrenia, I was beyond their capacity.

In the future, it is my hope that people with mental illness can be provided with opportunities to better themselves, on a “personal journey” level.  I think a great way to achieve this is through the arts.  Teaching people to express themselves through creative discipline.  When one takes violin lessons, or learns to paint, s/he practices the skill, learning to improve from a mentor.  In this process of artistic growth, personal psychological growth can also occur.  And for those not artistically inclined, there is writing, athletics, and so forth.

A return to “apprenticeship education” can help a person grow and develop, while also benefiting from highly-personalized interactions, and dare-I-say faith.  Faith that the person will succeed.

And if we went back to this type of education, we might have a resurgence of Renaissance. People, not only being productive and profitable, but creative.  I’m tired of seeing boxy brick houses.  Why cannot we allow workers of all types to adopt creative techniques as they apply their skills?

I muse, I wander here in this post.  But such I feel.  Society must abandoning the negative assumptions that stigmatize the “mentally ill.”  Instead, they can offer unconditional love and belief in a “crazy person’s” ability to grow and develop, like anyone else.  When we water a seed, it grows.  Such too is mental wellness.  Such it needs to be.
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The Joy of Working Despite Disability

It is a wonderful privilege I enjoy, having a full-time job.  In fact, it is a sheer miracle, given that I am diagnosed with Schizoaffective disorder.  This is a combination of both schizophrenia and bipolar disorder.  I have suffered from tactile hallucinations, delusions, paranoia, depression, mania and anxiety.  Such crippled me mercilessly for years, and I was unable to hold down any job.  I went on disability, prepared to never work again.

 

Yet I recovered against all odds.  Four years ago, I started the drug Clozapine, and it completely reformed my life.  No longer do I relapse and fail, repeatedly falling to square one.  Instead, I can climb higher and higher each day, dedicating myself to my profession.  And my current profession?  Mental health work and advocacy.  Namely, I work as a peer specialist at an agency that provides housing for people with mental illness disabilities.  Given that I am diagnosed myself, I am able to understand clients on an equal level.  A degreed professional cannot do this.

 

Now that I have a profession, I enjoy going to trainings and conferences where I can meet and network with other similar professionals.  It feels good to belong to such a passionate community.  I also now sit on three committees with the NYC Department of Health and Mental Hygiene (DOHMH), sitting at the table as a representative for those who receive Medicaid health insurance for a mental illness disability.  My insights and opinions are well received.

 

As I devote myself to mental health advocacy, and as I encounter professionals with masters degrees, I realize that the “world” of consumers in the system is much different than the “world” of well-off, working professionals.  Working professionals can assume a cushion of sanity within their their minds, while those struggling with mental illness suffer from being robbed of stability.

 

Mental illness can be difficult for an unafflicted to fathom.  Why would a person behave paranoid without provocation?  Why would a person spend thousands of dollars wildly at fruitless investments, without being able to discern imminent failure?  If I could explain succinctly why I personally once behaved this way, I would say thus:  I had no choice.  Thoughts attacked me, and I had to express them outwardly if I was to have any emotional release and releif.  Bottling thoughts up is unhealthy for anyone.  If insanity is what comes out, then just imagine what that person’s internal condition is.

 

For some people, only Christian hell can compare.

 

Looking back at my own unstable years, I realize that I had no capacity to learn from past experiences.  I was unable to learn from the people around me, and I was unable to grow and develop as an adult.  This is because the voices in my head never evolved.  Thus, the same conditions afflicted me year after year.  This lack of change served to keep me at the same age and maturity level for many years.  I failed to age emotionally.

 

This is why I often feel younger and less mature than others my age.  At age thirty-one, I only have worked two years full-time, and have not yet earned a master’s degree.  (The latter is not so terrible.)  I see friends from school now working as doctors and lawyers, and I feel dreadfully behind.  What makes me different from them?  Why was I afflicted, and not they?  I suppose it does not matter.  I have survived.

 

That is all that matters in the end.  I have survived.  And now, I want to help others survive.