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National Alliance on Mental Illness (NAMI) Walk May 5, 2014

Posted by Crazy Mermaid in NAMI.
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Back on May 28, 2008, I was locked up at a psych ward in a mental hospital  and stripped of my civil rights. All the doors were locked, and no one would tell me what I had to do in order to leave. My stay centered on how long a particular psychiatrist, Dr. Suh, thought I needed to stay. What I needed to do in order to get released was a mystery that no one explained. After a few weeks of being locked up, I came to believe that my husband was the source of my problems. I was sure he had me locked up because he was sleeping with my sister, and he didn’t want me in the way of their budding romance. I explained my theory to Dr. Suh, but he didn’t believe me and wasn’t about to release me. This scene played out for three long, agonizing weeks. Each day Dr. Suh asked me stupid questions, and each day I gave him my answers. But they were the wrong answers, because he never would tell me that I was free to go.
Finally, after three weeks, my court appointed attorney, whom I hadn’t seen since my commitment hearing three weeks prior, showed up and told me I was being released the following day. Since Dr. Suh had just indicated hours earlier that he wasn’t going to release me, I didn’t know whom to believe. Was Danica, my attorne,y right and I was being released, or was Dr. Suh right and I was staying? I planned for the worst but hoped for the best.
The following morning, my caseworker, Michelle, summoned me to a stifling little room and told me I was leaving. She had me sign some paperwork (I actually was unable to write my name but that didn’t seem to matter) and then brought my husband into the room. At that time, she told me I should go to a support group sponsored by National Alliance on Mental Illness (NAMI). She said it was a group therapy kind of environment, and that only people with a mental illness could go. She indicated that attending that group would help me stay out of the mental hospital. I was all ears.
I was indeed released that day, and reveled in the freedom of not being locked up with no end in sight. I took Michelle’s advice and attended the support group, called NAMI Connections. My husband had to drive me to the meeting, which was held at Crossroads Mall in Bellevue, WA, because I was physically unable to drive because of all the drugs they had pumped into me at the hospital.
Once we arrived at the meeting, he left me at the door and Victoria, the co-facilitator, took me in hand. For reasons unknown to me at the time (but subsequently realized were induced by my medication), I started crying hysterically and couldn’t stop. Once the group started, Victoria led me out of the room and stayed with me while I tried to get control of my crying. The meeting only lasted 90 minutes, and I took up about half an hour of it with my crying jag. Finally, I got control of myself and we returned to the group. Once there, I was surprised at the number of people who had spent time at a mental hospital. In that environment, it wasn’t unusual at all. Many of the attendees could relate to my three weeks of being locked up. I felt good knowing that there were people in that room who understood what I had gone through. I felt a comradeship with them.
Once my medication started to kick in, my psychosis left me for the most part (I still hear voices when I get under stress), but I have continued to attend these support groups because of the fact that there are others like me there, dealing with the same problems I have. I don’t feel alone.
As I got better, I started getting more involved with NAMI. Now, I run a Connections support group and speak at colleges, hospitals, and police stations to audiences about what it’s like to live with a mental illness on a daily basis. That program is called, appropriately for me, In Our Own Voice, and it helps to put a face to mental illness in order to break down some of the stigma surrounding mental illness.
All of NAMI’s programs are free, but it takes money to run them. NAMI Washington’s only fundraiser is a Walk designed to raise money and awareness on Saturday May 17th. My team is called Merry Mermaids and Mermen, and this is a request for donations for my team. If you want to donate, any amount will help. The link is: https://securewalks.nami.org/registrant/LoginRegister.aspx?eventid=132532&langpref=en-CA&Referrer=direct%2fnone. Feel free to donate to either my team or me personally. Thank you for your consideration. Kathy ChilesNAMI Walk of Washington in Kirkland, 2011.

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In Our Own Voice December 4, 2011

Posted by Crazy Mermaid in mental illness, NAMI, Schizophrenia.
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The National Alliance on Mental Illness is a grass-roots organization that sprang out of the accusation by the medical profession that schizophrenia was simply the result of poor parenting.  Specifically, the mothers of schizophrenics were called “schizophrenogenic  mothers”.   Eventually, after years of being blamed for their child’s illness, the women banded together to fight the accusation that they had caused their child’s schizophrenia.  That first organization eventually branched out to include all people with mental illnesses and their loved ones and friends.  The organization eventually changed its name to National Alliance on Mental Illness, called NAMI for short.

NAMI has chapters in all States, and has several different Affiliates in each State. They can be reached at http://www.nami.org

NAMI has several “signature” programs that they offer in all 50 States, including NAMI Basics, NAMI Family to Family classes, In Our Own Voice, and several support groups.  Some of the groups are geared towards people with friends or loved ones who have a mental illness.  Others are geared towards people suffering from mental illness.  Because the needs of the loved ones diverges greatly from  the needs of those suffering from mental illness,  the two groups are kept apart.

I have been involved in a program called In Our Own Voice (IOOV for short) for several years.  This program is free, and it brings people who have a mental illness in contact with groups that want to learn about mental illness.  The program is structured into five parts, and includes a DVD that interacts with the presenters as well as a question and answer session at the conclusion of the class   There are two presenters, both of whom have been diagnosed with a mental illness.  I of course am one part of the team. My partner is a practicing chiropractor.  We are a good match, since we both have had psychotic episodes.  Coincidentally, we both purchased very expensive cars while psychotic.  I have been told that we are both fascinating people to listen to during our presentation.

Anyway, our favorite presentation is the one we do in front of a Family to Family class.  The free  Family to Family classes educate family and friends of people with mental illnesses about their illnesses. Generally speaking, these people are seeking to understand what is happening to their friend or loved one and how best to help them.  It’s our favorite class to give our presentation to because the audience is so thankful that we’re there.  I’ve been told many times that our stories inspire hope that one day their loved one can improve enough to live a better life.

In my portion of the presentation, I talk about what led to my psychotic episode and what it’s like to be in a psychotic episode.  The audience is allowed to ask questions, and we are supposed to make sure that we don’t answer any questions that we think are uncomfortable.  Keeping in mind that one of my “go-to” symptoms when I get under stress is hearing voices, I am asked often whether I’m hearing voices during that presentation.  Since I am uncomfortable admitting it, I deny that I’m hearing voices, which tends to surprise the participants.  I don’t know whether they believe me, but it is a form of self-protection .

I encourage anyone interested to call their local NAMI office and request an IOOV presentation. You’ll be glad you did.

Mental Illness Awareness Week Oct 2-8 2011 October 5, 2011

Posted by Crazy Mermaid in mental illness, NAMI.
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October 2-8 is Mental Illness Awareness Week. MIAW is a time to learn about serious mental illnesses such as major depression, bipolar disorder and schizophrenia.

One in four adults experiences a mental disorder in any given year. One in 17 adults lives with serious mental illness such as schizophrenia, major depression or bipolar disorder.

MIAW is especially important this year as severe budget cuts threaten mental health services in many communities around the country. People who do not receive treatment end up in hospitals, shelters, in jail or dead.

Learn more about mental illness and support, education and advocacy to improve the lives of individuals affected by serious mental illnesses at www.nami.org. Please join the public dialogue during MIAW.

Mental illness is a medical illness. No one is immune. About 60 million Americans experience mental health problems in any given year. One in 17 lives with the most serious illnesses.

Treatment works, but it can take 10 years, between the onset of symptoms and getting help. Half of cases begin by age 14, but less than half of children or adults get help when they need it. People with serious mental illness live 25 years less than other people.

Fight for community mental health care. Watch PBS’s new program Minds on the Edge: Facing Mental Illness: www.mindsontheedge.com. If nothing else, rent DVDs of the movies Canvas and The Soloist and discuss them with family and friends. Let’s learn and watch out for each other.

(From NAMI’s “Letter to the Editor” marketing package)

Virtual Hallucination Machine and Mental Illness Awareness Week September 30, 2010

Posted by Crazy Mermaid in mental illness, NAMI.
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October 3rd to 9th is Mental Illness Awareness Week (MIAW).  In celebration of this, some of the local National Alliance on Mental Illness (NAMI) chapters will have a virtual hallucination machine available for the general public to try out.  (Note: Eastside NAMI Washington will have it available Monday October 4th from 6:30 to 9 pm). What is a virtual hallucination machine?

Created by Janssen Pharmaceuticals, a Belgium pharmaceutical company, its purpose is to give mental health providers, police, and the public an idea of what it is like to have a psychotic break with reality. The virtual hallucination machine is designed to mimic the sensations that someone with schizophrenia or who is in the middle of a psychotic break with reality experience.

Consisting of goggles and earphones, the participant is set in various situations, with the goal of accomplishing a certain task such as getting a prescription filled at a pharmacy.

Once the goggles and earphones are on, voices begin to hiss, whisper, and sometimes yell at the participant.  There is no way (short of removing the goggles and earphones) to get the images to stop. As the experience continues, the participant becomes more paranoid as he “realizes” that the pharmacist is trying to poison him or have him committed or the pizza delivery man is delivering a poisoned pizza or any other obviously errant perceptions of reality suddenly become very real.

“Things flash out of nowhere. Small voices saying, ‘Go get your medication.’ The bus driver is talking to you normally and all of a sudden he starts calling you ‘Your Highness.’ Then he becomes part of the hallucination,” says one participant. “It’s a whole busload of children, then it changes to a busload of adults. There’s a nurse involved. You see normal things and then all of a sudden someone pulls up next to you and says, ‘Get off the bus.’ ” You are in the role of the individual on the bus, seeing what is in the mind of someone who is like that.”

Participants get to experience the very real perception of that situation from the psychotic point of view, and come away with an appreciation for the high degree of Hell the psychotic person experiences during that psychotic break with reality.  Unlike the participant, the psychotic individual is unable to simply remove the earphones and goggles and walk away.  The psychotic individual is stuck in that awful place for as long as it takes to get him out of there.

Said one participant: “It was a very tiring and painful experience. I don’t know what you can do if you cannot turn it off,” he said after taking off the goggles and earphones on the Virtual Hallucination Machine. “It’s the emotion it brings up in you from within. The voices are rude and insistent, demeaning and demoralizing.”

“The neurons are firing images in random order. Like being awake but dreaming. Like a lot of jumbled thoughts,” said another participant. “Like being trapped in a nightmare but you are awake.”

For more on this subject, check out the following:

Virtual Hallucination Fact Sheet NAMI http://namifingerlakes.org/Documents/Virtual%20Hallucinations%20Fact%20Sheet%20CRC%20FINAL%206%202%202006.pdf

Cruel Voices http://namifingerlakes.org/Audio_Files/Cruel%20Voices%20-%20Schizophrenic%20Auditory%20Hallucinations.mp3

Straddling the Line of Insanity (trying out a virtual hallucination machine) http://www.denverpost.com/news/ci_4076750

Legislators, the Media and the Public experience Schizophrenia http://www.nycvoices.org/article_737.php

Mindstorm: simulating psychosis; A new virtual reality experience depicts hallucinations in 3-D.(A Virtual Hallucination: Mindst http://www.entrepreneur.com/tradejournals/article/171253778.html

Rebranding Mental Illness to Brain Functioning Impairment July 22, 2010

Posted by Crazy Mermaid in mental illness, NAMI.
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The tainted reputation of the age-old term “mentally ill”, used to describe people with brain functioning impairment (BFI), has added to the burden of suffering caused by the malady itself.  In general, the public’s only contact with people suffering from BFI is when the term “mentally ill” is used in the news media to describe a person with BFI who committed a crime (usually murder).

The irony of using the term “mental illness” to describe brain functioning impairment is that it is an inaccurate application of the word “illness”. According to Thesaurus.com, the distinction between an illness and a disease is that the term “illness” means sickness or poor health, while a disease is an impairment of health or a condition of abnormal functioning. So in reality using the term “mental illness” to describe an impairment of brain functioning is certainly not the most accurate terminology.

One of the most fascinating points of brain functioning impairment is how criteria in the health spectrum are defined as either “physical” or “mental”.  For example, migraine headaches, although technically a BFI, are considered part of the physical health rather than mental health spectrum. This is because the manifestation of that BFI is physical pain in a specific locale.  In general, if you can perceive the manifestation of the injury in physical form (cuts and/or bleeding from blunt trauma to the head) or “feel” it at a specific location (migraine headache), then it’s thrown into the “physical illness” category.  If you can’t see a direct physical manifestation of the disease, then in most cases it’s deemed a mental illness. I’m generalizing here, but the main point is this: perception would change dramatically with the re-branding, since one of the points of the re-branding is to challenge the illogical way that BFI is categorized.

Eventually, with the advent of the new brain imaging tools, brain functioning impairment will hopefully take its rightful place in the ranks of a “physical” rather than the esoteric “mental” category, and will earn a more empathetic public persona.  Until that happens, however, there are things we can do to speed up a more positive view of brain functioning impairment in the public’s eye. We need to re-brand.

Re-branding the current term “mental illness” to the more accurate description “brain functioning impairment” (BFI), will go a long way toward solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out the awful connotations of the old term. At a minimum, rebranding will go a long way toward forcing the general public to change its perception of people with BFI.

For example, imagine how differently a news story would play out if the news media were forced to use the more appropriate and accurate description. “Joe Blow, affected with Brain Functioning Impairment, is a suspect in the murder of Jane Doe” would certainly go a long way towards stamping out the intolerance and embarrassment engendered by the mental illness misnomer. Forcing the use of the re-branded term BFI would put the proper emphasis on the impairment as the cause, rather than the murderer’s sinister moral bankruptcy.

Traditionally, in Lance Armstrong’s “yellow” cancer campaign, the color yellow, the shirt color of the winner of the well-known bicycle race, is associated with success and winning.  It’s natural for breast cancer survivors to fasten onto the color pink because of the color’s long association with females. Similar reasons tie Heart Disease Prevention to the color red. But mental illness?  Do you know what the color is? It’s silver.

Publicly promoting identification of the color silver with BFI is a natural first step in the re-branding effort. Selling silver wrist bracelets similar to the ones sold by the Lance Armstrong Foundation would kill two birds with one stone, generating both positive publicity and money to further support the re-branding effort.  Actively working to put a well-known face and personality to BFI will further the re-branding.

Please join me in pushing to effect this change by actively working to encourage and persuade major organizations like NAMI (National Alliance of Mental Illness) -info@nami-eastside.org (WA) or info@nami.org (National) and DBSA (Depression Bipolar Support Alliance – info@dbsalliance.org- to become a front-runner in our re-branding effort.  It won’t be easy but it will be well worth the effort.

Who Is Thomas R. Insel and Why Should You Care? June 1, 2010

Posted by Crazy Mermaid in Healthcare, mental illness, NAMI, Recovery.
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Who is Thomas R. Insel and why should you care?

I first came across Thomas R. Insel’s name in April 2010’s Scientific American article, Faulty Circuits.  (I wrote a blog about that article).  After seeing his name listed as one of the keynote speakers at NAMI’s (National Alliance on Mental Illness) Washington D.C. National Convention, I became “curiouser and curiouser”, to quote Alice in Wonderland.  With the miracle of Google to aid me, I decided to do some research to assuage my curiosity .  Who exactly was this guy?

As it turns out, Dr. Thomas R. Insel is the Director of the National Institute of Mental Health (NIMH). Part of the United States Department of Health and Human Services, it is the largest research organization in the world specializing in mental illness.  Formally established in 1949, research is conducted in Bethesda, Maryland at a central campus- not too far from NAMI’s roots in Baltimore. Their mission,  “transforming the understanding and treatment of mental illness” aims to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior, with particular focus on genetics, neuroscience, and clinical trials of psychiatric medication.

Based on blog entries In his Director’s Blog ( http://www.nimh.nih.gov/about/director/index.shtml) as well as the Scientific American article, it’s not surprising that his tenure at NIMH has been distinguished by groundbreaking findings in the areas of practical clinical trials, autism research, and the role of genetics in mental illness.  What is surprising is the refreshingly honest glimpse into the state of affairs that his blog gives the general public.

In his March 30 entry, Who Will Develop the Next Generation of Medications for Mental Illness, Insel examines the mass exodus of the pharmaceutical companies from the psychiatric medication development programs.  According to Dr. Insel, two of the major pharmaceutical companies, GlaxoSmithKline and AstraZeneca will  no longer develop new psychiatric medication for a number of reasons that he goes into depth about in his article.  He then comforts the audience with the exciting notion that “the scientific opportunities for progress (in the psychiatric medication development department) have never been better”, and then goes on to explain how NIMH can help get the job of developing new psychiatric medications done.

In today’s blog, Dr. Insel cites several surprising (to me, at least) statistics, including:

  1. Each year, there are nearly twice as many suicides (33,000) as homicides (18,000).
  2. The life expectancy for people with major mental illness is 56 years (the average life expectancy in the U.S. is 77.7 years).
  3. Mental disorders and substance abuse are the leading cause of disability in the United States and Canada.

Then, he moves on to show how much mental illness and incarceration are intertwined and what can be done about it.  As he is in a position of authority, with the power to make changes, I have hope that he will be able to make a difference. This one man, in the right position at the right time with the right experience and knowledge, will no doubt make a great difference in the lives of the people living with mental illness, both inside the prison system and outside of it. He just might even change the face of the prison community.

Overall, his blog, highlighting the challenges and successes of his work at NIMH, presents hope for those of us suffering from mental illness that progress is indeed being made on the medical front.

I am excited to have such a distinguished gentleman in such an important position. Great things can and will be accomplished with Dr. Insel at the helm of the NIMH.  In conjunction with NAMI, we will no doubt see great strides made in the way we look at and treat mental illness in the not-too-distant future.

New Mental Health Parity Law February 9, 2010

Posted by Crazy Mermaid in Healthcare, mental illness, NAMI.
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Sunday’s Wall Street Journal article by Jillian Mincer, Mental-Health Benefits, heralded the new Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, which took effect January 1, 2010.  Paul Wellstone, Democratic Senator from Minnesota, and Pete Domenici,  Republican Senator from New Mexico, formed an unlikely bond through their personal family stories of mental illness, coming together to ultimately pass a new law designed to make the world a better place for people suffering from mental illness.

The forerunner of this new act, The Mental Health Parity Act of 1996 (MHPA), was the first such effort. Basically, it said that a group health plan couldn’t impose annual or lifetime dollar limits on mental health benefits that are less favorable than any such limits imposed on medical surgical benefits. This act was necessary because it was common practice  for insurance companies to  pay more for medical illnesses than mental illnesses.

For example, if Harry required open-heart surgery, an insurance company limited the amount of money it would pay a provider to $2 million over the course of Harry’s  lifetime for his heart. That same insurance company would turn around and limit the amount of money it would pay a provider for Tom’s depression to $750,000 over the course of his lifetime. The MHPA of 1996 mandated that if the insurance company allowed Harry $2 million in insurance for his heart, then Tom got $2 million for his mental health treatment. But that law didn’t go far enough. The insurance industry still managed to heap tons of discrimination on the treatment of mentally ill patients.  So we went to work, cutting away some of the insurance industry’s wiggle room.  The result was the Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008.

The Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 went into effect in October 2009. But the new coverage wasn’t available until only a little over a month ago (January 1, 2010), which is when new insurance policies went into effect.

The MHPAEA still allows companies to decide whether  to offer mental health and substance abuse disorder (MH/SUD) benefits in their benefits package. They don’t automatically have to offer them when they offer medical health policies. So that means that the only groups that are affected by the new law are those that  already have mental health and substance use disorder (MH/SUD) benefits in their benefit packages and choose to retain those benefits.

Key changes made by MHPAEA, which is generally effective for plan years beginning after October 3, 2009, include the following:

• If a group health plan includes medical/surgical benefits and mental health benefits, the financial requirements (e.g., deductibles and co-payments) and treatment limitations (e.g., number of visits or days of coverage) that apply to mental health benefits must be no more restrictive than the predominant financial requirements or treatment limitations that apply to substantially all medical/surgical benefits;

• If a group health plan includes medical/surgical benefits and substance use disorder benefits, the financial requirements and treatment limitations that apply to substance use disorder benefits must be no more restrictive than the predominant financial requirements or treatment limitations that apply to substantially all medical/surgical benefits;

• MH/SUD benefits may not be subject to any separate cost sharing requirements or treatment limitations that only apply to such benefits;

• If a group health plan includes medical/surgical benefits and mental health benefits, and the plan provides for out of network medical/surgical benefits, it must provide for out of network mental health benefits;

• If a group health plan includes medical/surgical benefits and substance use disorder benefits, and the plan provides for out of network medical/surgical benefits, it must provide for out of network substance use disorder benefits;

• Standards for medical necessity determinations and reasons for any denial of benefits relating to MH/SUD, must be disclosed upon request;

• The MHPA parity requirements under existing law (regarding annual and lifetime dollar limits) continue and are extended to substance use disorder benefits.

While these new requirements are getting us all closer to a more just mental health system, we still have a long way to go.

Note: Check out Time Inc.’s interview with Senator Pete Domenici.  Senator Donenici, whose daughter suffers from schizophrenia, worked closely with National Alliance on Mental Illness (NAMI) in order to get his bill passed into law.  A fascinating read. http://www.time.com/time/nation/article/0,8599,1848887,00.html.

Mental Illness and NAMI Family to Family Facilitation Training January 21, 2010

Posted by Crazy Mermaid in mental illness, NAMI, Recovery.
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This past weekend, I had the opportunity to participate in some training. Orchestrated through NAMI (National Alliance on Mental Illness), the training, called Family to Family Support Group facilitation training,  was designed to teach us how to facilitate a group of family members coming to a peer support group.

When I signed up for the training weeks ago, I was given the distinct impression that both mentally ill and non-mentally ill people would be participating in the training. It made sense at the time that both groups could effectively facilitate such a support group, although the perspective of each facilitator would necessarily be different.

I was surprised if not shocked, however, to discover when I arrived that of the 14 students, I was the only one who was mentally ill. There were fathers, mothers, daughters, and sons of mentally ill people, but not mentally ill people themselves. Except for me.

At that point, I became very concerned that I had overlooked some obvious point. Why was it that I was the only mentally ill person there? What did all of the other mentally ill people know that I didn’t? Why weren’t they here with me? And so I gave it serious thought to leaving.

Seriously considering abandoning my mission before I even began, I explained my concerns to my trainer, Kate. Together, we faced every one of my concerns head-on, leaving nothing left unsaid or unexplored.

I was worried about how well I would take listening to all of the pain and suffering the mentally ill person (like me) managed to inflict on family members (like them) who would be showing up for the support groups.

I was concerned that family members (like them) might be afraid to really share their feelings with the support group after they learned that mentally ill people (like me) might be present. We worked through each of these issues, and ultimately she told me that the decision of whether to stay or go was mine.

Making the decision easier in some respects and harder in others was the fact that my roommate for the weekend just happened to be a licensed mental health counselor who just happened to know my sister, also a licensed mental health counselor.  As anyone experiencing any sort of emotional trauma can tell you, life with a professional counselor is much, much better than life without one. It’s like having a heart attack when your neighbor is a heart surgeon. A good place to be ill, in other words.

Ultimately, after much thought, I decided to stay, with the caveat that if I became uncomfortable I was going to just get up and leave without any fanfare.  Giving me her business card, Kate asked me to call her right away if I suddenly bolted, just to make sure that I was in an emotional state that allowed me to drive myself home. I agreed to her request. Fortunately, it never came to that.  Surprising myself, I stayed for the entire training.

In retrospect, I probably shouldn’t have been there. But I’m glad that I was.

Mental Illness Rebranded (Revised 12.16.09) December 14, 2009

Posted by Crazy Mermaid in mental illness, NAMI.
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RE: Rebranding

The tainted reputation of the age-old term “mentally ill”, used to describe people with Brain Functioning Impairment (BFI) has added to the burden of suffering caused by the malady itself. In general the public’s only contact with people suffering from BFI is when the term “mentally ill” is used in the news media to describe a person with BFI who committed a crime (usually murder).

One of the most fascinating points of Brain Functioning Impairment is the way criteria in the health spectrum are defined as either “physical” or “mental”. For example, migraine headaches, although technically a BFI, are considered part of the physical rather than mental health spectrum. This is because the manifestation of that BFI is a physical pain in a specific locale. In general, if you can perceive the manifestation of the injury in physical form (cuts and/.or bleeding from blunt trauma to the head) or “feel” it at a specific location (migraine headache), it’s thrown into the “physical illness” category. If you can’t see a direct physical manifestation of the disease, then in most cases it’s deemed a mental illness. This practice of forcing the separation of “physical” from “mental” would have to stop with the re-branding. Brain trauma, brain cancer, dementia, depression, migraine headaches, schizophrenia, and bipolar disorder would all fall under the same general category: “Brain Functioning Impairment”. Imagine the political and economic powerhouse of a category whose umbrella spanned such a wide array of ailments. It’s enough to make a lobbyist salivate all over himself.

Eventually, with the advent of the new brain imaging tools, the term “mental illness” will become obsolete, taking its place next to the “bleeding” done to people a hundred years ago in the name of “health”.  Until the changeover diagnosis tools such as MRI’s and brain scans take deep roots, we can speed up a more empathetic public persona with one simple action: Rebranding.

Re-branding the current term “mental illness” to the more accurate description “Brain Functioning Impairment” (BFI) will go a long way towards solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out that awful connotations of that old term “mental illness”. At a minimum, re-branding and expanding the definition of BFI to encompass ALL brain-impacted impairment will go a long ways toward forcing the general public to change its perception of people with BFI.

Lance Armstrong’s “yellow” campaign focuses on the association of the color yellow (the shirt color of the winner of a well-known bicycle race) with success and winning. Similarly, it’s natural for the breast cancer survivors to fasten onto the color pink because that color has long been associated with women.  The color red is a natural for heart disease. But mental illness aka Brain Functioning Impairment? Nothing. Nada.

Because the color blue is already associated with depression (having the “blues”) publicly promoting identification of the color cobalt blue with BFI is a natural first step in the re-branding effort. (NOTE: I don’t really care about a specific color as much as the selection of SOME color). Selling cobalt blue wrist bracelets similar to the ones sold by the Lance Armstrong Foundation (with a cute little saying similar to LIVESTRONG )would kill two birds with one stone, generating both positive publicity and money to further support the re-branding effort. Putting a well-known face and personality to BFI (Kay Redfield Jamison comes to mind)  will go a long way towards the re-branding effort.

Please join me in pushing to effect this change by actively working to persuade major organizations like NAMI (National Alliance of Mental Illness) to become a front-runner in our re-branding effort. It won’t be easy, but it will be well worth the effort.

NOTE:  One of my readers told me that someone “beat me to the punch” HAPPILY!!!  The color’s silver, not blue…….  check it out at http://www.silverribbon.org/

My (Fake) Funeral November 11, 2009

Posted by Crazy Mermaid in mental illness, NAMI, Recovery, Therapy.
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My upcoming 50th birthday has been weighing on my mind, but not for the usual reasons. I have no qualms about turning “old”- whatever that means.  But as the day approaches, I’m dreading it more and more. To celebrate it would be a lie.

Because the person that I used to be suddenly and irrevocably died last year. It was a slow death, sort of. Or at least the process of dying stretched out for months. The mental breakdown that started in February 2008 began the process of cutting away at the very core of my being, and the medication I began taking in late May 2008 finished off what was left of me.  All of what I was is gone, survived by the shell that houses my physical being.

How, then, to celebrate the occasion of the 50th anniversary of my birth?

In my therapist’s office this morning, we arrived at a solution- of sorts. Rather than look at the situation as the anniversary of my birth, I will acknowledge the anniversary in the form of a funeral.  It will, at least for this year, represent my death 16  months ago rather than the anniversary of my birth.  The funeral will be a ceremony in which my grieving can be publicly acknowledged for what it is: the loss of life. The grief is for the birthday that I cannot have.

I returned from counseling and told my husband that in lieu of a big party,  I wanted to have a funeral for my 50th. Not the usual joke-type party where everyone dresses in black and brings old-people gifts. The real kind of funeral. The kind that recognizes the enormity of my loss. I explained that because I died last year (see my blog entry “I Am No More”) celebrating my birthday would be a lie. I told him I’d like just 4 of us, including my sister and brother-in-law and him and I, to go to a nice restaurant, all dressed in black. I said I want a funeral flower arrangement- the kind with the 3 gladiolas. (Did you ever notice that funeral arrangements usually contain those three gladiolas?) One sticking straight up and the other two at 90 degree angles? I told him I wanted one of those. And I want to write my obituary and post it on my blog.

At first, he was in shock (understandably). Then he said that from his perspective, I don’t appear to have changed much. Or at least I have recovered from my psychosis and from those horrible, horrible side effects of the medication I was taking. I no longer believe, sadly, that I am a Mermaid. I no longer have the Parkinson’s, no longer have trouble peeling a banana. I can once again read and write. Getting all of these abilities back after losing them gives the impression that, at least physically, I am back to my old self, whole again.From his perspective, I’m back to normal- more or less.

But it’s really not about how I appear physically to him. It’s about how I am emotionally. And I know that I will never be the way I was. For better or worse, the person that I used to be died. Quickly. Last year. And so for that reason, I cannot in good faith celebrate the 50th anniversary of my birth.  My therapist gave me permission to have the funeral. And after discussion with my husband, he agreed that if that’s what I want, then he’s willing to go along with it also. My sister, I must confess, doesn’t yet know anything about my wishes. But I’m sure that she will honor my request.

We will wear black at dinner. I will purchase a funeral arrangement. I will write my own obituary, to be posted on my blog. The final sentence will say: “In lieu of flowers, donations may be made in her memory to her favorite charity, NAMI”.  Just like the real obituary will say when my shell also dies.

And so we’ll have a funeral. A private funeral, but still a funeral. Because that’s what it really is.