ECT and My Secret Setback by Kurt Sass

ECT and My Secret Setback

By Kurt Sass

The Hidden Side Effect of Shock Treatment

During the years of 1999 to 2000 I had a total of 22 ECT (electro convulsive therapy) treatments—also known as “shock” treatments. These treatments literally saved my life. At the time I started the treatments, I had been in such a deep depression for the previous 11 months I could not even eat or get to the bathroom without assistance, and suicide was a constant thought.

While these treatments did indeed give me my life back, unfortunately they have caused a severe side effect which I have not revealed to a single person (except for my doctors) for all these many years until this article. This side effect is one of an acute short term memory loss.

Fortunately, I do not have the type of severe long-term memory loss suffered by about 10% of ECT users in which one can permanently forget family members, friends and events. With my memory loss, if you tell me something in the present, there is a somewhat decent chance I might forget it, at least for a brief time. I might remember it the next day, but not 10 minutes after you told me.

To be honest, at first I wasn’t even aware of the memory loss. In fact, when I went back to work a few months after the ECT treatments, my employers would constantly praise me for always being on top of things and never forgetting. My secret was that I had developed a skill of writing everything down on index cards, even the smallest of tasks. I also incorporated this system into my home life. I now had lists for everything. For the longest of time, I just thought I had become a very, very organized person. Slowly, however, it started to dawn on me that since I had never kept lists before in my previous 43 years of existence, so maybe there was a reason behind it.

When I finally did become cognizant than I suffered from short-term memory loss, I was devastated. To prove to myself that I did indeed suffer from it, I tried to go through my daily routine without writing notes. I didn’t make it to the afternoon. For example, I went to the store, which was only 4 blocks away, to purchase a number of items, but by the time I got there, I could only remember one. I know for a fact I had intended to buy many more items, because I had over one hundred dollars in my wallet.

Unfortunately, this memory loss is permanent. I have learned to cope in many ways. I still have my lists, of course. When an assignment is given to me at work, I usually send a confirmation e-mail to make sure all the details are covered. If the assignment is given over the phone or in person, I will no doubt ask a second time so I can write it down. Even the smallest of items has to go on my list. People will sometimes question me as to why I write everything down, but a quick joke about my “getting on in years” satisfies their curiosity.

The reason I haven’t told anyone about the memory loss before is that I didn’t want them to treat me differently because of it. I am certainly not ashamed of it, just as I am certainly not ashamed of my mental illness. I just don’t want people to feel that they must speak slowly or have to remind me of things, because there really isn’t any need. I have developed the skills and mechanisms to cope and overcome.

As to the reason why I have decided to finally open up about my memory loss? Well, just like with any other secret, the longer you keep it inside you, the more it festers inside you until you set it free. I learned this many years ago when I decided to tell people about my mental illness, so it is only natural that it should carry over with my memory loss.

Well, that’s it for now. Time to write a note to remind myself to edit this story tomorrow.

A Life Stifled by Donald

A Life Stifled

By Donald

I was about six months old when my sister and oldest brother had to babysit me. They did not want to, and so stuck me in an opening in the pillar under the Shickshinney Bridge. I still don’t know how long I remained there in that pillar. All I remember is that when I came out of it, I was sitting on a sofa chair and my sister was dangling a pair of baby blue plastic toy baby shoes. I guess she was probably testing me to see if I was conscious. I believe that I must have appeared to be retarded. Later on in my life, I started to understand what was going on and what people were saying. Because of my mental condition, I would misinterpret a lot of things going on around me. I still do, and because of that, my caseworker calls my attention to it.

When I was 39 years old, my wife left me and I had to go to court for a child support hearing to decide how my support payments would be made. I had no idea how to go about making child support payments. I never knew enough to let anyone know about that. To tell you the truth, I am not sure if it would’ve made that much of a difference anyway. They put me in prison for 90 days. It was my first offense, and I should have gotten only 30 days. But I guess that did not make any difference either. While there, I was put into solitary confinement for 24 hours. I could hear another prisoner being raped. I felt totally helpless and sad that there was nothing I could do about it, even though I was not locked in my cell. I can still hear that prisoner scream in my mind. I was scared to death the whole time I was in there, especially when they made me take a shower. Ever since then, I have been scared to death, especially when any man stands too close behind me.

Bruni in the City: Love and Arrows By Christina Bruni

Bruni in the City: Love and Arrows
By Christina Bruni
I Struck Out on OKCupid
I've had a wackadoodle time online. I don't recommend any of the Internet matchmakers.  OKCupid is only for hook-ups. The six foot tall guy I contacted there responded by telling me since I was only five feet tall he couldn't have sex with me, so he wasn't interested.
Imagine that: I was too short and too skinny for a guy even though I'm beautiful: go figure.
With OKCupid you take a quiz. If it rates you as less kinky and less adventurous, no guy will contact you. The service is rigged for sluts and gigolos.
I had no great experiences with chemistry.com and eHarmony as well. eHarmony caters to conservative Christians. If you write in your profile that you like to attend and perform at poetry readings no eHarmony match will contact you. They're looking for church-going hausfraus, not left-of-the-dial indie girls.
The matches on chemistry.com were incompatible too. One guy wrote the love of his life must love animals. I detest dogs, and cats creep me out. Dog hair sheds all over and dirties your clothes. Take your animals, Jack, and open up a zoo. Or find a woman who's willing to vacuum the couch and de-lint your suits; she isn't me.
You can see why I'm skeptical of Internet dating services; they promise so much and deliver so little. The alleged matches aren't compatible if you're looking for the right person, not just an almost-perfect person. I don't think like the author of that book who proposes you should settle for Mr. Good Enough. I think you should aspire to meet and date a great guy.
No guys on OKCupid were reliable. I could tell they weren't on the level. Guys would send this message: “hi.”  Just “hi.” That doesn't bode well for their conversational skills on a date. Guys, you respond to a woman online. Refer to something she wrote in her profile. You say “hi,” and I'll say “goodbye!”
I took a dating break this winter in the polar vortex. As I write this, it's March 2nd and a snowstorm is on the way, even though there's only three weeks until spring. My goal is to resurrect the love search in June when the weather is warmer.
Any woman who is desperate to meet a guy because she doesn't want to be alone will only attract Mr. Wrong, a guy who's going to use her, or worse. My hardship is that I have other more pressing goals and it wasn't ever my number-one goal to be in relationship. Meeting my soul match would be the icing on a tasty cake. I already have the cake; it's time to frost it.
I wanted to bet my friend a wager that I'd meet Mr. Right-For-Me in the summer. “D” turned me down even though I offered him a free meal, not a monetary prize. So, I'm going to bet the readers of New York City Voices a friendly wager: If I meet the guy this summer, I get to tell you I told you so. If I don't meet a guy, you can smirk at me.
To the victor go the spoils. To the heartbroken go the Kleenex. I've stocked up on the tissues just in case.

Pullout: “Imagine that: I was too short and too skinny for a guy even though I'm beautiful: go figure.”

Book Ends: Silent Screams by D. Cross

Book Ends: Silent Screams by D. Cross

Reviewed by Columnist Kurt Sass

Silent Screams is a brutally honest, well-written account of the life of a woman who has endured a myriad of hardships most of us could barely imagine.

Although the first four chapters are devoted exclusively to her experiences with (and failures of) the mental healthcare system, the remainder of the book is a biography of a life full of setbacks, and more importantly, uncaring people.

The book is full of countless example of how people in all facets of life had failed her. For example, growing up, many doctors would dismiss her many symptoms until her condition grew worse and worse. This neglect continued until she finally got diagnosed with tuberculosis, far later than necessary. In addition, the nuns refused to believe her when she said she had difficulty walking up stairs.

Years later, while in a psychiatric hospital for six weeks, she was never told her diagnosis, participated in completely silent group therapy and psychiatry sessions and was discharged even though told that she had no home to go to.

Ms. Cross also reveals later in the book about an illness later in her life and the many many delays in getting a proper diagnosis and treatment, all the time while in constant pain.

If all this wasn’t enough, throw in some uncaring relatives and three “predators” and you can see what a brutal existence this women had to deal with.

The major point I got from this book, unfortunately, is that no matter where you turn, especially the ones in whose hands you put your life, they will disappoint you. Ms. Cross’s viewpoint, as stated in the end pages of the book, has been one of acceptance.

While I recommend this book to most people, there are some that definitely should not be reading this. To most people, this book is a good example of how, in some cases, the medical/mental health care system, in the regard to how they treat people, has not changed (in some cases) over the years. Great strides have been made, and patients for the most part, have been treated with more dignity, but this book will show as evidence that much more needs to be done. For this reason, I recommend this book, especially for mental health and medical healthcare advocates. While I am glad Ms. Cross has found peace in acceptance, I wish she had an advocate during her times of need to help get the proper care and treatment she needed.

On the other hand, this book should not be read by anyone who is currently undecided about their opinion of mental health or healthcare professionals in general or anyone who is contemplating seeing a therapist or healthcare professional for the first time. It does not give a full representation of healthcare professionals. This is just one person’s experience and is not typical. It is also a very depressing book.

SSI, SSD and Employment: What You Need to Know

SSI, SSD and Employment: What You Need to Know

By Tim Deal, Paralegal, MFY Legal Services, Inc.

PART ONE

The Importance of and Barriers to Employment

Entering, remaining in, or returning to the workforce is an important goal for many people experiencing mental illness. In addition to the financial benefits of earning employment income, there are many other benefits to working. For many people, employment is a vital part of the recovery process.

Unfortunately, as they seek to join the workforce, some people find themselves confronted by a variety of barriers. One serious barrier is a fear of losing their Supplemental Security Income (SSI) or Social Security Disability (SSD) benefits. Another barrier is fear of Social Security overpayments. Overpayments occur when the Social Security Administration (Social Security) alleges they mistakenly increased a recipient’s payment and then decrease that recipient’s SSI or SSD payments until Social Security has been recouped, paid back for their supposed overpayment.

MFY’s New Employment Initiative

MFY Legal Services has provided free civil legal assistance to low-income New Yorkers for over 50 years. The Mental Health Law Project at MFY has been helping New Yorkers with mental illness with civil legal issues since 1983. At MFY, we recognize both the importance of employment for people with mental illness and the seriousness of these Social Security-related barriers to work. In response, the Mental Health Law Project started a new initiative to support the employment goals of people with mental illness. We want to encourage employment by letting people know that they can work while receiving SSI and SSD. In fact, if they do, in most cases they will end up in a better financial situation.

Additionally, our employment initiative seeks to address Social Security overpayments in two ways. First, we want to help prevent overpayments from happening in the first place by educating people on Social Security’s reporting requirements. And, for those who have already received notice of an overpayment, we want to assist them in the overpayment appeal process by helping complete the appropriate Social Security form, and when possible, helping to negotiate with Social Security and appearing at Social Security hearings.

In what follows, we hope that readers will gain an understanding of how employment affects SSI and SSD, as well as what they need to do to prevent and fight overpayments. People who receive both SSI and SSD face a more complicated situation, because they have to deal with both sets of rules; SSI rules apply to the SSI money they receive, while

SSD rules apply to the SSD money they receive.

How Employment Affects SSI and SSD

One of the most common questions we hear is, “How exactly does my work income affect my Social Security benefits?” Social Security’s rules for how employment affects SSI and SSD are very complex. However, there are some general rules to keep in mind when going back to work while receiving Social Security benefits.

Employment and SSI

For people receiving SSI, Social Security adjusts their SSI checks every month that they earn work income. Here is how it works: Social Security wants to know how much money SSI recipients receive in total from work each month before taxes. Once they know this amount, they do a few things. In general, Social Security will ignore the first $85 that an SSI recipient earns at work each month. Then they will cut what remains in half. This amount is what Social Security deducts from the SSI check. The key here is that Social Security does not deduct an SSI recipient’s work income dollar-for-dollar from their check so, if they work, they will end up bringing home more money. In 2014, most people who receive SSI can earn up to $1,700 per month and continue to be eligible for at least some money in their SSI check.

Example One: Let’s say Ms. Smith is an SSI recipient who begins earning $685 a month at work. Social Security will ignore the first $85 dollars that she earns, reducing the amount of employment income it considers from $685 to $600. Then they will cut that $600 in half, bringing it down to $300. This $300 is what they will deduct from Ms. Smith’s check. So, if she receive $808 in her SSI check before working, that amount will be lowered to $508. The important thing to remember is that, in this example, Ms. Smith is earning $685 and receiving an SSI check for $508, increasing her monthly income to $1,193.

This article has been split into two parts. In part two, we will discuss how employment earnings and SSD work together, showing in several examples how various incomes and SSD payments add up. We will also discuss preventing and fighting overpayments.

Contacting MFY

If you have any questions about how working effects SSI and SSD, or if you would like assistance appealing an existing work-related overpayment, MFY’s Mental Health Law Project is here to help. Our intake line is (212) 417-3830. That line is opened Mondays, Tuesdays and Thursdays from 10:00 AM to 5:00 PM.

I Can See the Light by Andrea

I Can See the Light

By Andrea

I am 45 and I have been “sick” for the past 12 years of my life. I have bipolar II, an illness that I would not wish on anyone. I grew up very loved and very happy, but eventually my world was shattered.

My first marriage left me abused and broken. I tried, and succeeded for a while, to put that part of my life in the very back of my mind. Some things just can’t stay buried forever. Flashes of the past came back to haunt me, and major depression set in. I went into a very dark place, and it has taken me 12 years to even slightly pull out.

My days have been empty, and everything has seemed so dark. The darkness is frightening. It is lonely, filled with self-loathing, disgust and pain. Lots of pain. The kind that starts in your soul and seeps through your veins until it has taken over your body. I keep my doors shut and my curtains drawn. I don’t answer the phone or the door. I keep everyone and everything locked out. I don’t even open the mail. Every time I see a glimpse of the light I retreat. The darkness is now what I know. It has become too familiar. It seems that the scariest place I’ve ever been has turned into the only place where I want to be.

I spend my days and nights alone. At this point I wouldn’t have it any other way. Isolation has become my best friend, or so it seems. The anxiety added to the sadness has been an awful curse. Then you add the voices to that and it makes life almost unbearable. The voices are loud, and at times unrelenting. They tell me I’m worthless, ugly, a failure. I’m not sure why, but I always believe what they say. They tell me to hurt myself. They tell me to cut. Between the voices, and the sadness, and the anxiety, sometimes I do what they say. Cutting always seems like a good idea. It always seems like it will make me feel better, but it never does. Sometimes I do it hoping to bleed the illness out of me. Sometimes I do it just to be in control of something. I can’t control the darkness, but I can control the blade.

I’ve attempted suicide four different times, and obviously lived to tell about it. I would be so angry at whomever had rescued me. My family and the ER. I mean seriously! Why couldn’t they get it? I would be better off dead! People don’t understand and they can’t understand unless they’ve walked this road themselves. I would always hear, “what will your children do without you?” What could they do with me? My wanting to die had nothing to do with them or anyone else, it was only about me. Well, that’s selfish you might say. I don’t think so. It’s the direct result of an all-consuming illness. It’s something that I could not control.

I’ve been hospitalized over 15 times at several different hospitals. A couple of times for only 3 or 4 days, but mostly at least a week, and many times as long as a month. I’ve met and I’ve observed lots of people. Some looked like me. They looked like they didn’t belong there. At other times, some looked like me when the darkness had taken over. The hospital started out as a scary place that I wanted to get out of, but it has turned into a safe haven. It’s a place where I could feel and act exactly the way that I felt. I didn’t have to worry about putting on a face and pretending that everything is okay. It’s sad to say, but the hospital became such a safe place that sometimes at night when I can’t sleep because my anxiety and fear is running high, I will pretend that I am there. That is sick I know, but honest.

I have had many ECT treatments. They only worked against, not for, me. I will go back and say, as I did in the beginning, that I have come out of the darkness for a while and for that I’m grateful. It has taken years of therapy, a great psychiatrist and lots of medication, but I’m pulling through. The dark is not always here now. Sometimes I can actually see the light.

A Facilitated Conversation On Mental Health: A National Dialogue

A Facilitated Conversation On Mental Health: A National Dialogue
By Sharon Goldberg
On July 23, 2013, Marvin Spieler and I attended a facilitated community conversation about Mental Health as part of The White House’s National Dialog on Mental Health, sponsored by MH Mediate. On January 16, 2013, President Obama began this initiative to raise awareness of mental health issues and ultimately reduce the stigma associated with mental Illness. One vital aspect of these discussions is in the creating of community solutions. People throughout the country are being encouraged to discuss mental health related issues and determine the best course of action to improve mental health services in their own communities.
We were organized into groups and seated at round tables, each person having the opportunity to discuss various aspects of mental health as it related to services. Our table had three mental health service consumers. One individual not only received mental health services, she was working on her doctorate in social work and had been providing services to mentally ill clients. Another individual was a social work student intern. Another worked with troubled children and adolescents and was primarily concerned with obtaining mental health services for them. Our two facilitators had very little knowledge about the issues facing mental health consumers and acknowledged their enhanced knowledge as a result of our candid discussion.
The three major topics discussed were: (1) how mental health stigma affects our society and what we can do about it; (2) what barriers to communication about mental illness exist and how can we overcome it; and (3) what strategies we can use to ensure full access to mental health services. All ideas from these discussions will be transmitted to The White House.
Of the many examples of stigma, barriers to communication about mental illness and solutions to these problems discussed, most noted was the criminalization of mental illness in the recent mass shootings in Connecticut, Colorado, and Virginia involving persons with some sort of mental disturbance. Another example closer to home was the mentally disturbed individual who had pushed Kendra off a subway platform, resulting in “Kendra’s Law,” or AOT. Also discussed was how providers of mental health services, often themselves, stigmatize the mentally ill in that they are often selective in whom they wish to treat. The news media was also cited as a culprit for its stigmatizing headlines in newspapers and insensitive TV and radio news reporting.
Our conclusion about communication barriers to mental illness discussed included such varied factors as fear, culture, stigma, prejudice, blame, lack of training and lack of listening. We could improve communication by bringing in family, opening up to cultural understanding, and moving away from the medical model of treatment to a more humane approach. The patient is a person first, not a disease. We should stop the media from misrepresenting the mentally ill, and we should make it easier to navigate and access services.
The question of what problems need solving when it comes to obtaining better mental health services include housing, education, employment and community supports. As Marvin Spieler stated, “A home, a job, a friend.”
Overall, it was a very positive experience. I had the chance to express my views and get positive non-judgmental feedback. I believe these discussions will lead to a better understanding of mental health issues, more humane treatments and positive outcomes for consumers of mental health services.