NAMI
On the first Saturday of October, for as long as I can remember, the local Chapter of NAMI joins together for a barbeque at McFarland Park next to the Tennessee River in Florence, Alabama. NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots organization for people with mental illness and their families. Founded in 1979, NAMI has affiliates in every state and in more than 1,100 local communities across the country.  NAMI is dedicated to the eradication of mental illnesses and to the improvement of the quality of life for persons of all ages who are affected by mental illnesses.


It was a warm but cool autumn day with a gentle October wind blowing from the river and a cloudless piercing blue sky was overhead.  The sunlight was warm but the air was cool as people arrived in cars, vans and buses.  The crowd quickly grew from just a few to over a hundred.  For the most part people wandered around although some gathered in small groups waiting for their instructions.  You see this is a very special group of people who for the most part have been either abandoned or forgotten by their family and friends by no fault of their own.


Some call them throw a ways, other call them freaks, a few call them crazies but I assure you that they are just like you and me with one exception:  their mind has a disease that many people cannot deal with because of a variety of reasons but I think it is mostly ignorance.  For the most part society does not instruct us concerning how we can and should understand actions of our mentally ill brothers and sisters.  The mentally ill really do not ask much of us except for a little understanding and some compassion.


The local President of NAMI rose out of the crowd and welcomed everyone to the barbeque.  Finally some instructions were to come and everybody would become more at ease!   Instructions are very important otherwise the people would not know what they are expected to do or how to act.  He said he wanted to begin my saying grace:


“Our Father which art in Heaven, Hallowed be thy name.  Thy kingdom come.  Thy will be done, as in heaven, so in earth.  Give us day by day our daily bread.  And forgive us our sins, for we also forgive every one that is indebted to us.  And lead us not into temptation; but deliver us from evil”.

“Now it’s time to get in line.  We are going to have two lines.  One line will begin here on the right of the picnic table and the other line will be on the left of the picnic table.  Wait to be served your food.”  The line on the right began to form but not on the left.  Then a couple of people got into the line on the left and then few more until both lines we even.  Everything was very orderly and no one cut into the line and everyone patiently waited for their turn to get a cold hamburger, or a cold hotdog, there was cold barbeque beans, potato chips and a choice of beverage.  Most of the patients are in their 50’s and  60’s and most of them have lost their fathers and mother.  I think of them as the forgotten ones who live in isolated small rooms throughout the city.  Some care for themselves but others require the care from others.


After some had eaten their lunch they began to meander away.  Some returned to their van or bus to patiently set until everyone boarded.  Others nervously smoked cigarettes or chewed gum.

How can I volunteer with NAMI?

As a grassroots organization, NAMI relies on volunteers at all levels of the organization. Contact the NAMI National HelpLine at info@nami.org or 800-950-6264 for opportunities at the national office as well as referral to state organizations, affiliates, and NAMIWalks events in your community.

p.s.

It was hard to talk about my sister, Connie, when I was growing up. She had her first psychotic break 1969. She ran out of the house, "Help! There is something inside me."


Eventually, Connie was diagnosed with a mental disorder -- schizophrenia, and she is ranked at the top 10 percent of the most severely ill.


She sees and hears things that are not real.  Most people with the severity of her disorder take their own lives.


One day we were driving to a doctor's appointment and she covered her face with her hands and simply said, "I don't know who I am; I don't know where I am." 


Most of my life I never wanted to read anything about schizophrenia because it frightened me. I was always reluctant to discuss my sister's illness because of the associated stigma, and I wondered if others would think there might be something wrong with me or my family.


Sadly, I think most families suffer in isolation. Isn't it a shame that there is still a stigma today? It shouldn't be, because everyone is affected in some way by people with mental problems. Although it may not be discussed, we all know a cousin, an aunt, a co-worker, a friend, or even a parent with depression, bipolar disorder, obsessive compulsive disorders and addictions. The severity of these problems varies widely. 


Some patients may require only psychotherapy; some may need low doses of medication and therapy. In the most severe cases, patients may require hospitalization. 


Perhaps education is the answer. We should think of those suffering with a mental disorder as we do with diabetes or any other medical problem.


I love my sister, the person underneath the illness, the woman the caregivers often couldn't see. That love kept my mother and me searching for answers.


Eventually, the doctors were able to treat my sister with medication. Combined with the supportive care of an outstanding psychiatric rehabilitation program, the medication enabled my sister to live a more stable and contented life. She lives her life quietly now, and with dignity. 


After my mother's death, I became the principal caregiver for Connie and as such often became frustrated and discouraged, prone to feelings of despair, resentment and exhaustion. After discovering siblings cope differently with family illnesses and crises, it relieved these negative feelings.


Now, I realize that people like me overfunction in an effort to control the situation and as a result enable others to underperform to their full ability. It is critical that caregivers set boundaries and seek help in order to live happier, more balanced lives. 


Understanding this has given me an overwhelming sense of forgiveness and acceptance.


The medical community has made great progress in the treatment of mental disorders through pharmacological breakthroughs and community rehabilitative programs. Many people incorrectly continue to assume that mental disorders are the result of parenting and early childhood stressors. In the past decade, tremendous strides have been made in the area of biological research that supports a physical and chemical, or physiological, cause for the most serious of mental disorders.


Improvements in medications in the past 20 years have enabled a mass exodus from the state psychiatric hospitals, greatly reducing the number of patients who require long-term institutional care. While some state hospitals have campuses the size of universities, the buildings now stand empty.


The public may believe these large unoccupied state hospital facilities demonstrate that the problems of people with mental disorders have been cured or managed. Certainly, the patients have greatly benefited from the improvements and enjoy a higher quality of life because they are blending back into society.

In some cases, the medication alone is not enough to sustain people with moderate-to-severe mental disorders. They need the support of psychiatric rehabilitation that helps them live as independently as possible in the community through job coaching, medication supervision and housing.


People with mental disorders need to be respected and embraced. These disorders could affect any one of us and they don't discriminate based on race or socio-economic status.


How would you want to be treated if you or your loved ones developed a mental disorder?


Let's erase the stigma of ignorance, tear down walls of shame and build bridges of compassion.




Comments:
 
PrestoBlammo   PrestoBlammo wrote
on 12/29/2008 4:09:41 PM
I'm not so sure about the medication improvements causing a mass exodus from the mental hospitals. I'm more of the opinion that people just didn't want to pay for them any more. Some of the mentally ill made it, or if they're lucky they get to live in group homes. Many wound up in rest homes with the elderly--another group we'd like to pretend to take care of--the rest wound up on the street. Homelessness is directly related to mental illness, these aren't all cases of happy hoboes out there. Fifty per cent of all mentally ill people have been forced to self-medicate putting them at risk of alcohol and addiction problems. Their medication is expensive and often unaffordable unless they're lucky enough to wind up in a good clinic or program. One in five people will suffer from mental illness at some point in their lifetime. We all need to start working on these things. A society is measured by how it treats it's ill, infirm, and elderly. From what I can see, we're not doing too well on that count.

BlueIris   BlueIris wrote
on 10/11/2008 6:21:42 PM
Thank you for sharing about your sister. I love how you wrote, "She lives her life quietly now, and with dignity."... In my comment before, about the first part of your piece--I had felt that it needed more personal or emotional touches, although it was still very moving. You gave wonderful details about the beginning of the event; then it seemed to me like it was suddenly over. I was left wondering about the patients and what happened during lunch. I think you could include some of what you wrote in your comment to me, in your writing. You could mention that a lot of the patients have schizophrenia. You could also explain about the limited conversations. Although they didn't speak much, they were considerate, and the socializing was important to them. They crave some social interaction, just like the rest of us, even if it is limited by their disorders. Those were just some thoughts.

zaidsong   zaidsong wrote
on 10/11/2008 11:38:14 AM
Thank you so much for sharing your story, Hank. As a therapist and as a former director of a psychiatric rehab program for severely, persistently mentally ill people, I am so grateful for you. Thank you for speaking your truth, for exposing the reality of how mental illness effects a family, and for working so hard at your own residual issues, leaving you in a place where you can advocate and care from a centered place. It's so hard for people to get past the behavior adn see the precious person who is tangled up in the web of it all. You are a gift, and so is this writing. (((((((((((((((((((((((((((((((((((((Hank)))))))))))))))))))))))))))))))))))))))))))))))))))))))))

Hank   Hank wrote
on 10/8/2008 1:57:04 PM
BlueIris: Most of the patients have a mental disorder call schizophrenia. That's a mental disorder characterized by abnormalities in the perception or expression of reality. It most commonly manifests as auditory hallucinations, paranoid or bizarre delusions, or disorganized speech and thinking with significant social or occupational dysfunction. Onset of symptoms typically occurs in young adulthood. Diagnosis is based on the patient's self-reported experiences and observed behavior. Therefore, conversations are limited to only a few words before the patient get very nervous.

BlueIris   BlueIris wrote
on 10/7/2008 4:26:50 PM
I assume you were a volunteer there, and I would love to read more about some of the individuals you met and conversations that went on.

Hank
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Synopsis
Some call them throw a ways, other call them freaks, a few call them crazies but I assure you that they are just like you and me with one exception...Let's erase the stigma of ignorance, tear down walls of shame and build bridges of compassion.
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