Author Archives: Fred Friedman

I have not written in here for a long time. During that time, I have drafted some posts but for one reason or another have not posted them. They are not perfect and I post them with some trepidation.

I wrote this last month.

This is a very difficult post/email for me to have to write. I have been very sick for several months and as a result I have not been very productive. In general, I do not know how to both accept personal responsibility and yet forgive myself and move forward.

As most of you know, I suffer from a mental illness, severe depression with psychotic features.  When my symptoms are active, I have problems functioning. In addition, I also suffer from Ankylosing Spondylitis, which causes my bones to fuse together.

Last September, I fell and apparently suffered a hairline fracture in my back. I was in a great deal of pain, and required a lot of pain medicine.  I slept a great deal. Unfortunately, many of my responsibilities as Head Organizer of Next Steps fell victim to my inability to function, and went undone.  For that I am very sorry.

Fortunately, I got a shot which relieved my pain, and my energy increased. I may need to get one or more shots so the pain reduction will be permanent. I am hoping to rebuild Next Steps and hope many of you will be willing to help me do that.

Over a year ago I wrote

I am writing this on the train to Springfield on Sunday night on the way to a news conference and rally on Monday. I have not written in here for a long time; partly because I never seem to have the time, partly because I do not know what to write.

I tell stories, mostly stories about myself and my experiences.  I have told the stories over the last ten years and the words come out easily; rubbed smooth with constant repetition .

“I am very sick and very poor. I suffer from a severe, chronic and persistent mental illness. Ten years ago I lost almost everything important to me; my wife, my profession, and most of my possessions, including my home of ten years.” I must have said these words hundreds, if not thousands of times.   They almost always move my audience, and almost always move me.  Yet…

We, you, the reader of this note; and I, must find a way so others do not lose almost everything. My story does not matter much, except to me and those few who love me.

I do not know what to do except what I have done for the last ten years. It is not enough but it is all that I know to do. I feel alone. I suspect that it is my illness speaking but how can I know?

I have been told that nobody really cares about my problems; they have enough of their own. Others say that I should be a positive role model. That I should provide hope for those who do not have hope for themselves.  I try but sometimes when I do, I feel like a fraud, because I do not have hope for myself. Others say that I do not listen to the pain of others and that is often true. I find hearing others’ pain hurts me. In the psychobabble I have learned, it triggers me.

I have not written in here for a while. In part this was due to my illness, in part because I did not know what to say.

I join the nation in grieving the shooting of Rep. Gabrielle Giffords and other Arizonans. I grieve any act of violence perhaps in part because my brothers and sisters, who along with me have a severe mental illness, are 11 times more likely to be victims of violence.  While the shooter was apparently mentally ill this is extremely rare.

According Daniel B. Fisher, M.D., Ph.D.:

“Let’s not scapegoat and stigmatize an entire group for the actions of a single individual,” Fisher said. “A literature review has shown that the homicide of a stranger by a person with severe mental health issues occurs to 1 in 14 million persons. This is so rare that the authors concluded it was impossible to predict violence by individuals with mental health issues (Nielssen et al., Schizophrenia Bulletin, 2009).”

“As usual, there are calls for forced treatment,” he continued. “Yet Arizona already has involuntary outpatient commitment (IOC)” – which allows the compulsory treatment of individuals with mental health conditions who live in the community – “and that did not prevent this violence. In fact, IOC makes people afraid to seek treatment, fearing services that are stigmatizing and coercive.”

I support the provision of hopeful, compassionate services and support, and research into holistic approaches. I know from experience that peer support can reach isolated, frightened persons. Yet there is talk of reducing community based services.

I also grieve because the people shot were also my brothers and sisters. They were all trying to make the world a better place. Trying to do this is hard enough without the risk of getting shot.

Perhaps the most important concept of a recovery based system is hope. I must admit that I find hope hard to find this week.

I have not written in here for a while. I have had the flu which has laid me low.

On Monday, I attended the Mental Health summit. The consensus was that one of the major issues facing us is the proposed reform of the Medicaid rules.

The legislators are meeting on Medicaid reform to discuss how the state could save money in a program that helps thousands of Illinoisans get the help they need.  I am afraid that the result will be reductions in services. We must do our best to stop this.

However, there is one reform that advocates for the mentally ill, the disabled, and seniors have been pushing for years.  That reform is a serious effort at rebalancing our system and giving people viable and fully funded options in the community.  Illinois lags behind dozens of other states in giving people options in the community.  This has led many of us having no option but to be put away in institutions.  I was one of those people.

As the deficit in Illinois climbs and bills pile up, organizations that are struggling to deliver options for people that wish to stay in their home and facing bankruptcy and closure while waiting to be paid.  When these organizations close more of us will face a dire choice to go without services, becoming homeless, or be placed in an institution.

This is a very grim picture and it’s made worse by the fact that it does not have to be this way.   Community based services are not only what must of us want but they are cheaper for the state.  Using the example of a person facing going without service or institutionalization, the state’s choices will push that person into an institution where it pays approximately $3,000 per month instead of finding ways to keep the community viable and only pay on average $1,000 per month to support that person.  Thus a real reform would be our elected leaders doing only what make sense: giving us the support we need in our homes and using our tax dollars wisely.  One way to do this is opening the door to funding home and community based services from funds previously used to pay for institutional care.  This is real Medicaid reform and real savings.

The question is not whether or not Illinois should do this but why didn’t Illinois do this sooner?  How much smaller would Illinois deficit be if it only gave people the services they have been asking for? How much further would people be on their recovery?

First, and most important, I am better. For those you, who were worried about me and offered to help, thank you. I am in your debt. Please do not assume that because I could not, or did not, take advantage of your offer that it was not appreciated.

It is the nature of my illness that when I am ill, there is little people can do to help me feel better. There are many things that people do that make me feel worse. Thus when I am ill, and forced to talk to people, I talk about how much pain I am in, hoping that people will understand and leave me alone. Sometimes it works, sometimes it does not.

Rereading the last paragraph I realize again that I describe my symptoms like an on-off switch. As if I am either sick or I am well. It is not that simple, it is more like a dimmer switch. I get sicker, and I get better, but it is not linear or even predictable. It is chaotic, up and down with little predictable pattern.  Sigh I cannot predict it, how can other people deal with it?

In any event, I do not want to step on the lead. I am better and am up for talking.

Well it has been a hard few weeks for me.

Of course, I had many reasons to feel bad. My tooth hurt. Both my shoulders hurt. I worked five weeks without a break. The event, on the 26^th while a success on many levels, did not raise nearly as much money as needed to keep staff on. My decision to keep them on nonetheless has brought Next Steps to near bankruptcy. On Friday, I laid off staff anyway because Next Steps could not afford them..

Yet that does seem to be a good enough reason me for me responding as I did.  I took to my bed. I did not focus and made bad decisions.   I missed meetings that were important to me. I did not honor commitments I made. I am ashamed.

Someone has suggested that means that I am powerless. I suppose that is true… but I believe that my acceptance of that fact is harmful to me. I need to believe that I can, by the power of my will, change my life. If I accept that I am powerless then my life is over although the pain will continue.

Another way to put that is: Reasonable people adapt to the world as it is; unreasonable people do not. Therefore all progress is made by unreasonable people. I will continue to be unreasonable.

I got the painful tooth pulled. I got steroid shots in both shoulders.

I spoke at a CIT training. I had a telephone conference with a potential Friend of Next Steps. I attended part of a training on framing our message.

I am not going to kill myself today or tomorrow, I might as well try to make the world a better place. Please join me in this pledge.

I feel helpless, hopeless and lonely.

For last few weeks, I have not done as much as I would like.

I am tired and I hurt.

I find being around people painful.

I am ashamed.

The key word is “feel.” In the past, these feelings have been less intense. They almost never go completely away.  I suspect that they will subside again. I also suspect that they will rise up again.

It is my responsibility to have those feelings cause as little pain for myself and others as I can.

The key words are “as I can.”

I can only do what I can do. I always, almost by definition, do the best I can with what I know. I take my responsibilities very seriously. I always have. Yet in the past similar feelings has caused great problems for me and others. I hope that I have learned a little about making them cause fewer and less significant problems for me and others.

Perhaps the key word is “hope.” I do not know that I can. I hope that I can make my feelings cause fewer and less significant problems.

Well, I will not kill myself today or tomorrow so I might as well try to make the world a better place.

http://www.youtube.com/watch?v=faTovfkLayI

I am not going to kill myself, today or tomorrow, so I might as well try to make the world a better place.

The last few weeks have been hard for me. No good reason, it just seems to be the way my body and mind reacts.

I want to make the world a better place. If I cannot do that, and I do not know if I can, I want it said when I die (apologies to Martin Luther King), “He tried to do good. He tried to give food to the hungry, power to powerless and hope to those without hope.”

I want you, whoever is reading this, to make a similar pledge. Tomorrow, you will not kill yourself, and you try to make the world a better place.

I cannot do this by myself and I do not want to.

You take it from here