Nothing About Us Without Us?

By Angela Cerio, CPRP

Not at the American Psychiatric Association’s annual conference

I went to the APA conference in Philadelphia May 5^th and 6^th 2012 as press, representing New York City Voices, in order to assess whether person-centered, recovery-oriented principles had filtered up to the psychiatrists. In my opinion, the answer is “no”—at least among most of the presenters. The only “consumer” presenter I am aware of was Dr. Kay Redfield Jameson. (See Melissa Farrell’s article in this issue.) I was reminded of the NY State Office of Mental Health Annual Research Conferences which I had attended over 10 years ago. Ken Steele, the founder of City Voices and the Mental Health Voter Empowerment Project was the only one of “us” among the presenters. Yes there was definitely an “us and them” atmosphere, both back then and at the APA.

One big difference between “then” and “now” is the reduction in value of the “freebees” the pharmaceutical companies are allowed to use to lure the psychiatrists to their displays. One workshop “Psychiatrists and Pharma: How Should They Interact?” addressed the issue of “samples” left by pharmaceutical representatives when they visit the psychiatrists. It was suggested that these samples should be “pooled” for use by all physicians within the practice or agency.  Press was not invited to the special “educational dinners” at swanky hotels in the area sponsored by the various pharmaceutical companies.

There was an “Ethics Tract” and I attended an interesting workshop: “Ethics and Diagnosis: The Medicalization of Predicaments.” It was sparsely attended compared to all the workshops on medication, diagnosis, and the financial considerations of psychiatric practice. I knew I was in the right place when the presenter stated, “Those of you who came to this session are probably not the ones who need to hear what we have to say.” They spoke about how distressing life events are often diagnosed in order to justify billing for medication and treatment, and how that diagnosis can lead to lifelong interaction with and dependence upon the mental health system.

I had originally planned to go to Mind Freedom International’s protest over the new DSM5. And I did. (See photos.) On Saturday, I marched with my peers from the “Society of Friends Center” to the Philadelphia Convention Center.  One marcher dressed up as a psychiatrist, complete with a huge hypodermic needle.  This protest was widely advertised as “Occupy the APA”, and there was obviously a lot of security in place at the convention center to prevent us from doing so.  The march included an event outside of the convention center in which people who had been diagnosed by psychiatry held signs in front of them with the diagnosis they had been given, tearing them up and holding up new signs with labels of their own choosing such as “human being”, “wounded healer”, “human rights activist”, “advocate”, or whatever words they wished to use to identify themselves. George Ebert of the Mental Patients Liberation Alliance in New York State, provided motel rooms for those who stayed over until Sunday to hear speakers Robert Whitiker, author of Mad in America and Jim Gottstein, Esq., founder of the Law Project for Psychiatric Rights from Alaska, a well known human rights activist.  An entire bus of protestors came in from Albany, so New York State was well represented.  Spearheaded in Philadelphia by Susan Rogers of the National Mental Health Consumers’ Self-Help Clearinghouse, this protest was widely covered on the Internet by Mind Freedom; Lauren Tenney and Dan Hazen on Youtube, and on websites www.theopalproject.org and www.mindfreedom.org.  Any event which brings together people who want to see change in the field of mental health, I find to be exciting and empowering, and this protest was no exception.

The 2012 APA Conference in Philadelphia

By Melissa Farrell

My perspective on the booths and presentations

I attended the American Psychiatric Association’s 2012 Annual Conference in Philadelphia on the weekend of May 5^th through May 7^th. I found the conference insightful in some ways, but lacking in many other areas. The areas that I found progressive included a Swami, who was also a psychiatrist, presenting his research findings on the benefits on alternate nostril breathing. A yoga instructor I had years back taught me to practice alternate nostril breathing. I was practicing this for a while when I was anxious and could not sleep at night; I did not want to give into the temptation of popping a pill to quiet my mind.

My traveling companion Angela Cerio and I spoke to a psychiatrist who agreed with us about the benefits of wellness, health and exercising. The psychiatrist even stated that she would rather her patients go to yoga than to have them medicated unnecessarily. 

What I was really appalled by was the excessive number of manufacturers present pushing Electroconvulsive Therapy (ECT) machines. There were at least five manufacturers of ECT machines present. ECT is such a drastic treatment resort and the benefits are often questionable, not to mention the long-term damage that its use can cause to patients. In my eyes this machine should not be such a hot commodity and so broadly advertised. This type of therapy should not be publicized the way it is, because of its known side effects. 

I also did not like the large presence of pharmaceutical companies either. I spoke to a representative who was there to promote Equetro, a form of Tegretol. I told him that I noticed there are not many so-called mood stabilizers on the market and he agreed with me. I noted that there is an over-abundance of neuroleptic or anti-psychotic drugs that are being produced. It is known that these types of drugs are prescribed by psychiatrists to children and adults who do not have the disorders that the drug was originally intended for. There are a lot of lawsuits for off-label use.

Additionally, I did not see any services that promoted alternatives to drugs at any of these booths. I did not see any information on orthomolecular therapy.  This type of therapy often involves high potency vitamins, supplements and proper nutrition.

I listened to a presentation by an Indian psychiatrist elucidating how our modern day Western psychotherapy is based upon the Bhagavad Gita, a sacred Eastern text. Highlighted were the text’s moral statements and the laws of the Universe like treating others with kindness, practicing gratitude and being humble. All of these principles are applied to the Western psychotherapy we have today.

Throughout the entire conference, I did not hear anyone using the words “peer” or “recovery.” The only notion of “peer” in this conference was by a peer provider, Dr. Kay Redfield Jamison, a prominent researcher and clinician and an authority on bipolar disorder. She was the only individual at this conference who disclosed about her lived experience with mental illness. She teaches and researches at the very prestigious Johns Hopkins University. I found Dr. Jamison very inspiring. She spoke so eloquently and openly about her life. She spoke about the difference between clinical depression and grief. She revealed that her spouse, another famous researcher and clinician from Johns Hopkins had died about 10 years ago and although it was very difficult for her to deal with, it was grief and not clinical depression that she was experiencing. Dr. Jamison spoke about how we need to normalize our experiences and not accept a clinical label to what are simply normal emotional states. She also spoke about the difference between clinical depression and other normal life experiences.

I would have loved to see peers involved in the conference. I thought it would be really out of place for me to disclose to anyone at the conference that I have a mental illness. I would have liked to see less emphasis on pharmaceutical drugs and more on integrative-type methods used in treatment. In conclusion, I believe that treatment is not about making money at another person’s expense but about doing what is morally and ethically right and true.

The Garden of Human Attachments

By Annie Elizabeth Martin
How human relationships change in the light of mental illness and recovery

Oftentimes, we find ourselves wondering why particular relationships we had nurtured and maintained for so long could suddenly become so dried out and desolate. It’s like discovering the carefully grown garden that you had patiently sowed had one had day become an empty, dry desert.
Growth and evolution between two people is inevitable. It is sad inevitably when best friends don’t stay best friends; when lovers don’t stay lovers, or even when a family doesn’t always stay close. I believe that all people are different and that everyone evolves.
But what if the changes in your relationships are not fully under your control? What if the differences between individual persons developed out of shame or misconstrued assumptions? And, what if it were a mental illness that produced such isolation?
Mental illness is not easily understood. Even with 1 in 4 people affected by a mental illness at some point in their lives, it’s something that many people still deeply suppress. With shame comes silence, and with silence comes distance between people. We fear what others might think of our emotional difficulties. We fear that no one could ever possibly grasp the complexity of mental illness. We fear being seen as abnormal in the eyes of others. We fear being rejected outright by the ones we love. Many other times our worst fears are realized by inconsiderate and careless people. So we remain hidden and isolated, fearing others’ judgment.
It’s easy to feel abandonment when mental illness comes into play. Not only do we feel alienated from ourselves, but we feel the love from others we had slowly built, dwindling as well.
However, by continuing to isolate, we notice that our garden which had once been filled with the blooms of fellowship with others become starkly alien. We ask ourselves: If supportive people are not here now, were they ever really there in the first place? We may make excuses for our friends due to the drought and weathering these relationships have endured. We may wish to repair the garden, but we realize that it takes more than one person to grow a friendship.
There may be times when we believe that others are looking down at our empty gardens. But it’s crucially important to remember that a barren garden isn’t our fault. Hard work often falters due to the caprice of Nature, and sometimes no matter how much patience you have, some relationships will never be the same. Sometimes all it takes is finding the courage to go back outside to the broken pots and plant oneself anew in the midst of the desolation. Once there, we must recognize that everything begins with ourselves. Only then can we begin to notice just how much room there is for growth.
If the gossiping of others returns at any time, recognize that these murmurings do not belong within your field of personal growth. Realize that these people see what they want to see. But if you allow yourself to be the gardener, you will have the skills and tools to plant a new garden and evolve a vision of what you want to be.
Water this new growth. Remember that it is okay to allow old seeds that wish to bloom once again. Some people may have moved on to be replaced by new relationships. Once in a while it is be okay to look back on how it all used to be.  But just remember not to stare too long, because you now have a whole new budding garden under your feet.

To see more of what Annie is up to, visit http://waitinginthedarkproject.tumblr.com/

The Depressed Donkey and the Manic Monster

By Andrew Wolf

How I took the drama out of my mental illness

The Depressed Donkey: 2002-2007

I felt like shoving a shotgun into my mouth and clicking the trigger, but the thought of splattering the wall with crimson raw hamburger was too much—that, alongside the unknown afterlife consequences.

Living with grey, gloomy lenses made life stale, cold and so lifeless. My brain was stone, like living encased in a rocky underground cavern. This persisted from the eighth grade to my freshman year in college. Due to my depression, I had no friends: people just didn’t acknowledge me. I played this role of the dark, twisted wanna-be serial killer, listening to Slipknot and Marilyn Manson alone in my car before class. I was locked into this persona of the dark drama king. I loved reading Stephen King, as well as Edgar Allen Poe’s Raven, which spoke to me. It was like I could dwell with a bird pecking at my skull, never to experience romantic or any form of deep heart love, for “evermore.”

Occasionally, the “Manic Monster” busted out its horned head, provoked by excessive energy drink consumption, but it could not ram all the way out from the cavern. So the glazed-eyed, hazy-brained donkey played its part for the majority of the drama.

The Manic Monster: 2007-2009

But the depression did not last forever. In the winter of 2007, the year I became a college dropout, the Manic Monster broke through. So I became like the naturally over-caffeinated Tigger from Winnie the Pooh, a total transformation from being the lethargic monotone donkey (also from Winnie the Pooh).

I boomed such absurdities as “I am God!” or “Stick it in your ovaries!” Now, I knew, even when possessed by the Manic Monster, that I was not actually God. Rather, I was merely imitating Robert De Niro from the film Men of Honor, gripped by his sense of deluded, carefree and unrestrained arrogance.

Due to my colossal arrogance, I got arrested three times. The first time, during the first manic spree, I had kicked in a door at the Village Pharmacy, spurred on by the deluded image of being abandoned by my peers during high school. I spent time locked up in isolation for two weeks. There was no charge due to "incompetence" during the time of the offense. The judge deemed me mentally unfit in that moment of kicking the door—I was seen as too insane to be charged with a crime.

The second time I was arrested for yelling out a hard rock song while listening to it through headphones during midday, in the middle of a college campus! Before I knew it, I was being frisked by the chief of police, who told me to leave the premises, but I refused. Hence, I was arrested, though luckily not tossed in jail. Instead, I was given a ticket for disorderly conduct. The third time I was arrested occurred when I scared my sister into punching me with two full blows to the face, but I had not touched her. I called the police on her, clearly with the malicious intent of giving her jail-time experience. Yet again, due to my being the primary aggressor, I was arrested and spent one more night in the same isolation cell as I’d stayed before.

Now

I am now attending the same college where I had both dropped out and had roared out the hard rock music. Last semester, I took 12 credits, retaking the classes I had previously failed. The tuition is fully paid by government grants, and I have earned all A’s, bringing my GPA up from the original 2.5 to 3.48, and I will attend classes next semester. This was made possible by my previous success at a community college which I left with a GPA of 3.5.

How did I manage all of this? Medications: they work! It took a few tries to find the correct dosages of the right medications. I started with Lithium, but now I’m taking Lamotrigine and Depakote that help me to maintain mental stability. During my previous role as a Manic Monster, I was unemployed for about two years. Now I have been employed as a waiter since 2010. I still have difficulties with low confidence and lack of friends; but I am functional and I no longer experience symptoms of major depression, nor symptoms of mania.

To complement this medication, I work with a cognitive therapist and a psychiatrist, and practice meditation. In particular, I am investigating “mindfulness,” which is being attentive to the awareness of the reality of things (especially of the present moment) which can be used as an antidote to delusion. Mindfulness practice, inherited from the Buddhist tradition, is being used in Western psychology to alleviate a variety of mental and physical conditions. Jon-Kabat Zinn is a major proponent of mindfulness. “Google” him or find him on “YouTube” to view one of his presentations. Eventually, I see myself becoming medication-free, but only in the next few years, after careful consultation with my psychiatrist and employing gradual dosage reduction.

Overall, I recommend getting professional help, taking the prescribed medications, and meditating to create the foundation to free yourself from bipolar madness.

Mental Illness & Addiction is Double Trouble

By Andrew Roberts

Dealing with both is a challenge

My name is Andrew and I'm 28 years old. I was born and raised in New Jersey. I have a sister who is slightly younger, and both my parents are still living and are together. I was asked to write my story, because I am living with mental illness. I am sharing my life story in the hopes that it can inform and maybe even prevent someone from unknowingly making a negative decision that will forever change them and their families’ lives.

I had a generally happy childhood. When I was 8 years old or so, I was diagnosed with ADD (Attention Deficit Disorder) and prescribed Ritalin. Though my grades improved, I did not like or accept that I was different. It was at this time that I first began therapy. I grew up participating in the Boy Scouts, and eventually attained the rank of Eagle Scout in 2001. I started playing guitar when I was 12 and I still play to this day. I got decent grades and was accepted early into college. I had an apartment on campus, which was normally filled by older students.

I started college when I was 17. It was also the age I stopped taking my Ritalin. I had always heard stories about how people went to college, partied hard, but still did well. My roommates were older and all friends with each other. They were into drinking and drugs. My first drink was on my first day on campus. It was only about a week afterwards that I tried drugs. Soon after that I would be sitting in class thinking about the party afterwards. I stopped going to class and focused on "mind exploration," as I called it. One day there were none of the usual substances around. A friend had told me about drinking cough syrup. Had I known that this would be the act that would eventually have me sleeping on a park bench, I would not have done it.

My descent into depression was quick. It didn’t take long before I started drinking cough syrup early in the morning and just remaining lying in bed. After a few more weeks I knew I was failing all of my classes. Rather than using substances as a learning experience or recreationally, I began relying on substances as a way to escape my misery.

To properly describe my state of mind, I feel I must go into the effects of Dextromethorphan (DXM, the active ingredient in cough syrup). When I took it, my thoughts went out of my body. I could barely walk and often would fall and hurt myself. My speech would slur and I eventually just stopped talking. It is a substance that while ingesting it, it is not possible to function at all in daily living.

To summarize, I dropped out of college and moved back home. My using escalated, as my depression deepened. While I was at home, my friend from high school killed himself. Aside from my mourning for him, I began to obsess about the idea of doing the same. When I was under the influence, I voiced that I was going to jump off a bridge. This was my first introduction to the mental health unit of the hospital. I began to see a psychiatrist and I was diagnosed with bipolar disorder and an anxiety disorder. Again I had issues with self-acceptance and took the news of these diagnoses like it meant that I would no longer be able to do anything in life. I was using DXM everyday and the idea of harming myself brought my drug usage to my parents’ attention. I was asked to leave their house. While the weather was nice, I slept on a bench in the park or in the woods. As time went on, I just “drifted” with various people around New Jersey. After hitting my bottom, I finally decided to seek treatment for my addiction and psychiatric disorders.

It is now 10 years later, and things are very different and much better. My recovery process was and still is gradual, but beneficial to my survival and peace of mind. In the last few years, I’ve gotten involved in volunteer work with people like me, living with psychiatric disorders and in recovery from addiction. I have a steady and very nice place to live. I will be starting school in about a month to become an electronics technician. I still play guitar and on the side I give lessons. My past has made me not only a stronger person, but also a much better person in the areas of patience and understanding. My bipolar disorder still surfaces with mood swings and I still have panic attacks from the anxiety. The education I receive in therapy as well as consistently taking my medication has made the severity and frequency of these symptoms manageable.

Although I have this illness, I do not define myself as ill. The complexity of life, its challenges, and the ability to overcome them are what I believe make me who I am. I am Andrew, I am 28 years old; I live with mental illness and I am happy. Thanks for reading.

City Voices Author Will Jiang, MLS Presents Autobiography A Schizophrenic Will: A Story of Madness, A Story of Hope at MDSG Oct 9th, 2012

Published Author Battles Schizophrenia

By William Jiang, MLS

New York City Voices helped me along the way

New York City Voices was founded by Ken Steele in 1995, 17 years ago. I was recruited by Dan Frey in early 2000, shortly after Ken died and left Dan at the helm of the newspaper. I shared my own personal story of recovery at that point in 2000 with the paper, and now, in 2012, my personal story of recovery continues.

A lot has happened in my life since then. When Dan recruited me I was fresh out of library school with my Masters, and I was excited to work with a newspaperman. The internship at City Voices was a good idea to get some job experience. Dan got me to work as a grant writer, webmaster, advertising manager, and freelance journalist. I parlayed the City Voices experience into my first career position as an adjunct lecturer at Kingsborough Community College as a librarian. The Kingsborough Community College position led to a seven-year position at the prestigious New York State Psychiatric Institute as the chief librarian of their Patient and Family Library. At New York State Psychiatric Institute I wrote my autobiography titled A Schizophrenic Will: A Story of Madness, A Story of Hope, which, recently, has outsold Sylvia Nasar’s A Beautiful Mind on Amazon.com. I am now in the process of returning to university part-time to study German at Hunter College, and to keep myself busy. I am currently tutoring people who seek further knowledge in Spanish, French, math, Photoshop, video editing, and book design.

However, life has not been an easy, straight road. I continue to struggle with clinical depression, physical aches and pains that I have accumulated over the years, as well as the schizophrenia that I have had since 1992. I was lucky to survive 2011 as I had two hospitalizations in November that involved suicidal ideas and urges. In November I welcomed the institutional halls of Columbia Presbyterian in White Plains because in that hospital was a measure of safety. I was afraid of what I might do to myself if let go without a medication regimen that did not work. After the mood stabilizer lithium failed, I was scared that nothing would work. The doctors were going to try Depakote on me. After an empowering conversation with a mental health therapy aide, I convinced my doctors to try me on Saphris or Fanapt as a mood stabilizer. My doctor put me on Saphris as a mild mood stabilizer, and the good news is that in addition to regular exercise, the Saphris seems to be helping me to stabilize my mood.

Another thing that has helped me, over the years, is my power of insight and my ability to fine-tune my medicines, with my doctor’s ok, to keep me out of the hospital and out of trouble. For some odd reason, when I start losing touch with reality, I sense it happening. I am able to take a little more of my antipsychotic, Navane, when this happens, and by using this technique, I have been able to keep myself out of the hospital for many years. This apparent control I have over my medication and neurochemistry has been a blessing for me because I’ve been able to take less of the antipsychotic than otherwise, and I have had the benefit of less sedation than if I were on a consistently higher dose. I feel that I work as a team player with my psychiatrists in my recovery. The game plan is to stay in therapy and keep an eye on my medication so we can beat the unbeatable opponent that is in my head: the schizophrenia. Although, I have not beaten schizophrenia for over 19 years now, neither has my competitor beaten me, and we continue to play the game. I feel I am playing as a worthy opponent against a formidable diagnosis.

My great regret is that I have had few girlfriends over the years and that none of them have stuck. That is the one thing in life that I feel that I am missing right now: a good girlfriend to share the highs and lows, the good times and the bad, in this drama that is life. I know I’ll meet her someday, and the figurative hearth burns with a steady, warm flame.

In the meantime, I work, I hang out with friends, and I study. I salute New York City Voices for their continued role as the oldest, and largest free newspaper for the people of New York City who suffer from the slings and arrows of mental illness.

Note: The author does not suggest that you manage your own medications as he does unless you talk to your psychiatrist and decide together that it is a safe and practical thing to do. As always, the medical advice of your doctor or your pharmacist should be heeded. To contact Will email fishmonger1972@gmail.com.