Mental Illness Can Seem Like Alzheimer’s

By Kerri Dyan Gentine

Recognizing my illness, I lost friends but I gained myself

“(My good fortune is not that I’ve recovered from mental illness. I have not, nor will I ever.) My good fortune lies in having found my life.”—Elyn R. Saks, from The Center Cannot Hold.

As part of my recovery from a nasty manic episode, I have been spending time with an elderly couple from church. They are lovely people and the woman, Sally, has Alzheimer’s Disease. I spend two evenings a week with Sally and her husband, Aubry, eating supper, going for walks, and listening to Aubry’s reminiscences about his life with Sally. He tells stories about her that he had learned from her family and friends along the way.

In her earlier days, Sally was a bookworm turned research librarian. She was also a forthright woman who became a community activist. She had a keen wit and a sharp tongue. She was known more for her intellect than her domestic skills. She “wore” her braininess proudly. Now, however, Sally’s brain is her worst enemy. It is in the process of slowly destroying her and there is nothing that can be done about it.

Recently, as I was thinking about Sally’s relationship with her brain, I remembered something I used to ponder concerning myself. Seventeen years ago I was suffering through a serious depressive episode, one that made me realize that I probably needed to get help. I hadn’t been able to identify such spells as depressive in the past. I took my moods for granted as did those around me. But this time I looked back and made sense of the fact that I had been experiencing such states of sadness and despondency since I was about eight years old (I was then 28). The dark moods went away but always came back more intensely and for longer periods of time than before. In my mind, suicide had become an option.

I, too, had always been known more for my intellect than anything else. I was a child genius who enjoyed the benefits of a classical education and earned a Ph.D. in English. I am a former university professor and award-winning public radio journalist. I, like Sally used to, “wear my brain” proudly. During the aforementioned depressive episode, however, I pondered the irony that while my brain was my dearest friend, it could annihilate me if given the chance. Over the years I had stopped thinking about this as much because the day-to-day reality of living with bipolar disorder tends to take away the luxury of existential ruminations. Sally’s struggle, however, has again brought this awareness about myself to the forefront of my mind.

A while back, Sally’s son-in-law asked me how I knew Sally and for how long. I told him that I had met her at church a couple of months previously. He responded “Oh, so you never knew Sally.” I replied, “She is still Sally.” I think I made him a bit uncomfortable with this statement. His discomfort reinforced an awareness that the people who knew Sally before the onset of what Aubry calls her “condition,” seem to be rather unsettled by her as she is now. I have come to the conclusion that this is because they have memories of Sally to compare her with as she is now. Sally, now is incapable of being that woman anymore—the woman who among other things, was devoted to fighting for the rights of others.

Again, this unsettled me, because there was a time when I was well loved, admired and considered successful. People wanted to be around me, to get to know me, to spend time with me. My family in particular, (my mood changes excepted), saw me as the woman who could do anything I had set my mind to do, and I could do it all extremely well with a minimum of effort. I was, a golden girl, lovely, bright, sunny, smart and witty. When I finally did start seeing professionals during that depressive episode 17 years ago, the people who knew me had to face the fact that I was in certain ways, a broken person compared to the vision of loveliness that they had pegged me as being for so long. I have, sadly, lost many friends because of my condition. And my family struggles along with me in light of it.

I am, however, much more at peace with myself these days. I have come to understand that everyone changes and grows, mental illness or not, Alzheimer’s or not. Sally cannot win the battle she is engaged in with her brain. It will kill her. I only hope for those who know her that it won’t be too soon. I, however, stand a fighting chance in my own struggle with bipolar disorder. It is one battle I intend on winning.

Mental Health Film Festival 2012!

The 8^th annual Mental Health Film Festival in New York City took place last spring and was, as usual, a resounding success with a turnout of at least 150 people, among whom were consumers, family members, mental health professionals, advocates and students. The event was co-sponsored by Community Access, an organization that has been providing programs for consumers since 1974 and NYAPRS, a statewide civil rights advocacy group that has been fighting for consumers since 1981. The theme for this event was Crisis Intervention: Interacting with the Police, which sometimes ends tragically as with the death of Iman Morales in 2010 and Shereese Francis, more recently. Both deaths could have been avoided if the police were trained to deal more sensitively with situations involving mental health consumers. Carla Rabinowitz, festival organizer, said, “The festival shined a powerful light on the growing movement advocating for this and it also shared what too many people don’t often get to see: people with psychiatric diagnoses just getting along with their lives like everybody else.” Hope to see you at the festival in 2013.

Expressing Yourself Through Art Can Save Your Life

By Elisabeth Bailey

Subtitle: Being creative more effective than meds

I have always been a creative person and seen life and the world from different eyes. It was quite apparent just how different I was at a very young age. After turning five years old I first verbalized suicidal ideations. Later the same year I announced I would not believe in a God which allowed so many horrors to occur in this world. Psychiatric appointments have been a part of my life for as long as I can remember, and every morning and night, rainbows of pills wait to be swallowed.

I wasn’t a happy child and my home environment was anything but stable and safe. I grew up with a bipolar, megalomaniac, abusive father. I feared and reviled him from the start. My mother was submissive, and often seemed blind to his abuse, so I was left to deal with these situations on my own much of the time.

As I grew older, I often lived without any close friends or had a typical social life at all. My depression worsened greatly and I began experiencing irrational fears. I often comforted myself, daydreaming of different ways to end my life, to stop the exhaustion of my existence

As I entered college, things began to look up, but new problems arose. I learned how to make friends and create a social life, but stress leapt upon me with ferocity. I punished myself for failures, and the negative self-talk that had been my shadow for so long grew louder and more powerful.

As mania of my own began to surface more and more, I took drugs, drank more, and soon found myself utterly exhausted and depressed. It was early in my college years that I first spent time in a psychiatric hospital.

After dropping out and starting school again and again through the years, I gave up. My mental health was poor and it controlled my life. Either the pain was so great and endless, or mania and hallucinations warped my logic and self-control. I burned and cut myself on a regular basis, and suicide attempts became almost a schedulable event. Soon, I tried electroconvulsive therapy, and was left in an even worse place than before. I was lost. Lost to my family, my friends, the life I once lead, and most of all, lost to myself.

Through all the insurmountable struggles and disasters, I turned to art and creative pursuits. It was not until about a year ago that I realized that expressing myself creatively helped me more than any medication I had been on, any psychologist or therapist I had seen, and any treatment I had gone through. It had always been a positive part of my life, and it was always there.

I have embraced the life of an artist, and find that being an artist gives my life a sense of purpose. It has always been there for me, and will always be there. Now I know that when things are awry, I have something to turn back to, something to re-direct my focus on. When I am manic, it gives me positive activities to pour my energy into. When I am depressed, it helps distract me. Though I have always loved art, it is only now that I realize I have been an artist all my life.

We each have creativity within us. The hard part is learning to find one’s own way of expressing it, and even harder is embracing that we are each artists each in our own way. You don’t have to earn a living or have works in shows to be creative; in fact it really doesn’t matter who you are and what you do. One needn’t paint the ceilings of a church, write a song that hits the top of the charts, or re-create an image of a can of soup. You are a creative being. Explore that part of you which is hidden. Try different media. Paint, write, dance, sculpt, sing, whatever! It really does not matter what you try, it is the process that counts. Nothing you create has to be seen or judged by others, it is just there for you. Tap into it, and you may find that, just as I have, art may be the best medicine for us all.

Editor at Large: As I See It

By Marvin Spieler

Some random thoughts about our plight

Government Cuts

I bragged to a new counselor about the length of time I’ve been hospital-free. In a way I want him to know who I am in this area. He related without mentioning a name a consumer who has been hospital-free an extremely long period of time. However, this ended recently. Why? Through no fault of her own, Medicaid took her psychiatric medicine off the drug formulary, a list of approved drugs for the Medicaid program. She can no longer receive from her pharmacy the medicine that helped her stay hospital-free for so many years. The new medicine, I assume a generic or a much cheaper medicine, was prescribed. Unfortunately, this wasn’t helpful and caused a relapse. This was a totally unnecessary consequence!

Hospitalizations can be costly in many ways. First generation psychiatric medicines are in generic form making them much cheaper. The government’s theory is this: a hospitalization is cheaper than the higher monthly cost of the newer second generation of psychiatric medicines. However, from personal experience and that of my friends, the effect of the newer medicines are much better. You can stay out of psychiatric hospitals and have a higher quality of life. Besides, to have symptoms return by taking generics usually is detrimental in a number of ways. Your quality of life can hit an all-time low. Paranoia or depression or manic episodes can reappear. One’s functioning may stop altogether unfortunately.

A hospitalization may be recommended to readjust to a new combination of medicines. This would be an ego-deflator. Also the shock of a ward’s environment can be that of “a house of horrors.” We may have put the idea of a possible hospitalization behind us. Also, we may lose our self-confidence as well as a held job. Income will probably be lost. Every day enjoyable activities may stop as well. Our high quality of life can be lost unnecessarily.

We have regressed through no fault of our own. The government’s theory of saving money put us back in a hospital. This is a downer. Other means of saving money should be found.

The solution may be for legislators to spend a week or more on a psychiatric ward. If they personally knew what it was like on a ward their current policy would stop and a sane policy of help will occur.

Penny wise and pound foolish. However, the disruption to our lives supposedly to save money is extremely severe. I feel we are receiving cruel and unjust treatment as a result of government financial policies.

Training of Psychiatrists

Under Obamacare there is a provision for doctor training. I propose that doctors be offered scholarships to go into geriatric psychiatry to meet the need to alleviate the shortage that now exists. I propose a 10% refund in college loans per each year of service as a geriatric psychiatrist not to exceed five years of loan forgiveness.

Apartment Programs

More of an attempt should be made to join consumers together who will share an apartment. This can more easily be done if consumers know, trust and are friends from the provider’s residence program if they have one. Also if a bad match exists in a supportive or supported apartment, the consumers should not be forced to coexist. Literally putting consumers together with no consideration of individual lifestyles is definitely wrong. Consumers are human beings with feelings and emotions. Showing no regard for an individual’s needs in apartment programs is cruel and should be avoided.

Note: How would you improve the mental health system? Let me know. Write to me at newyorkcityvoices@gmail.com or snail mail me at the address on page 2. Include a way to communicate with you if I think it is necessary to do so. All correspondence will be kept confidential.

Consumers Can Be Great Service Providers

By Kurt Sass

Peers have a special way of establishing trust with clients

There is a growing trend for the better in the mental health field to hire more mental health consumers, especially in direct care positions. As little as 15-20 years ago, this practice was relatively non-existent. During my most major depression 12 years ago I did not run into a single mental health “professional” who ever identified him or herself as a fellow consumer. Not a single doctor, therapist, clinician, or anyone else. I spent 2 years getting advice from people (though good-intentioned for the most part) who had no real first hand experience of what I was going through.

The closest I came was when I was already on the road to recovery, and my new therapist recommended that I start going to support groups in addition to seeing her. It was the way she explained it that really hit home with me: “Now I know we’ve made a lot of progress in the few weeks since we’ve met, but I feel you really need to talk to others that have gone through exactly what you have. To be honest, Kurt, I myself have never had Major Depressive Disorder or Bi-Polar Disorder, so I can’t honestly tell you that I know how you feel.”

And she was so correct. How would most therapists or psychiatrists be able to relate to lying in bed helpless for months at a time, or having constant suicidal thoughts, or not being able to sleep for days on end due to non-stop, rapid, racing thoughts? With insight like that, no wonder she stayed my therapist many years.

Once well enough to work, I was fortunate enough to find employment with Community Access, an organization that helps individuals with psychiatric disabilities. They also are dedicated to hiring at least 51% consumer staff, destroying the myth that mental health consumers are bad hiring risks. (Don’t worry, if you don’t have a psychiatric disability you can still apply—they don’t discriminate!)

My first position at Community Access was as a Service Coordinator, and I can’t begin to tell you how many times being a mental health consumer myself helped my “clients” (we actually use the term tenants as they each hold their own lease in many of our housing programs) through a difficult situation. I can’t tell you how many times, but I’m going to tell you of two right now.

Tenant AB (HIPAA privacy regulations) came to the office one day (which is located in the same building he lives) and he looked awful. In fact, he had progressively looked worse over the previous few weeks. He kept saying his stomach hurt him very bad, but had no idea why. I brought up the possibility of side effects from his medications as a possible cause. He did not want to discuss his medications at all. I then mentioned to him that once I had very similar side effects when I took Lithium. “You took Lithium?” he asked in utter surprised. Why? He inquired. After explaining briefly my mental health history, I told him about the side effects I had experienced with Lithium, but that I had talked to the psychiatrist, who made a change to the medication whose end result was the disappearance of these side effects.

Once AB knew my story, he really started opening up to me. He told me all the medications he was taking and about the recent changes in these meds, which seemed to coincide with his severe abdominal pain. I was able to convince him to see his psychiatrist, who ended up adjusting his medications to a level his system could tolerate. Without AB’s trust in me as a fellow consumer, he probably would have never revealed the information needed to get him the help he needed.

Tenant CD came into the office one day completely distraught. She felt that she needed to go the psychiatric emergency room (ER), but was afraid of what would happen if she was admitted, as she had never been there before. Having been in numerous psychiatric wards myself, I was able to tell CD both the good and the bad experiences I had there. CD said she felt very relieved after speaking to me, as she thought they simply tied most people to their beds, but felt much better about her decision to go to the hospital knowing someone who had actually experienced it as a patient. I was able to escort CD to the psychiatric ER and help ease and comfort her through the experience.

The bottom line is that clients (for lack of a better term) feel much more comfortable and empowered when at least some of the staff they encounter are their peers. Fortunately there are organizations such as Community Access out there that actually go out of their way to hire people with psychiatric disabilities, not just to give them an opportunity, but also because they realize what a valuable asset their experiences bring to their organizations.

Book Review: Sugar & Salt-My Life with Bipolar Disorder

By Kurt Sass

Sugar and Salt by Jane Thompson is her story of decades-long battles, setbacks and triumphs against bipolar disorder.

One thing that sets this book apart from other writings from people dealing with bipolar disorder (Manic Depressive Disorder) is that Ms. Thompson does not glamorize the manic phases of the disorder. I’ve read other people’s accounts of their bipolar disorder in which the emphasis is so heavily on the manic phases and the deeds done during those periods (shoplifting, wild sex-capades, etc.) it almost makes the outsider crave for a taste of the experience of the mania.

While it is true that many people do feel a burst of energy and creativity during a manic phase, Ms. Thompson gives the full picture of mania, inclusive of a constant state of confusion and inability to concentrate—she once went through a period having 27 jobs in 3 years—as well as extremely poor decision-making and its consequences. She does talk about hyper-sexuality during her manic periods, but not to glamorize it, yet to explain that during her mania she mistook this sex for love.

The other thing that sets this book apart from other writing from people with bipolar disorder is that she does not write only about her bipolar disorder. I have read other people’s accounts in which every single sentence was in relation to illness. It was refreshing to see that Ms. Thompson’s bipolar disorder does not define her, that it is only one part of her.

On a personal note, what really kept my interest was the many similarities between myself and Ms. Thompson. We both have battled bipolar disorder for decades, were both misdiagnosed for years, and both had parents that were never diagnosed. I am positive that anyone dealing with bipolar disorder can relate to Ms. Thompson’s story. I would particularly want to point out the appendix starting on page 155 for some very helpful advice.

In summary, I would recommend Sugar & Salt to anyone who would like an honest and accurate account of what it truly feels like to endure and live with bipolar disorder as well as anyone currently going through the disorder to see how a long-time member of the club has handled it successfully.

MFY Legal Services, Inc. Announces New Legal Clinics to Assist with Obtaining Access-a-Ride

By Dinah Luck, Senior Staff Attorney, MFY Legal Services, Inc.

It’s complicated, let attorneys help free of charge

Access-A-Ride (AAR) is an accessible transportation system operated by the Metropolitan Transit Authority (MTA) for people who cannot use subways and buses due to their disabilities. The Americans with Disabilities Act (ADA) requires the providers of public transportation to provide comparable public transit services to people with disabilities. People who are unable to take public transit due to a psychiatric disability are eligible for AAR, but they might face particular problems in the application, assessment, and appeal process.

Applications

Although the application can be found on the MTA website at http://www.mta.info/nyct/paratran/access_application.pdf, the MTA has told MFY that they only accept applications mailed to the applicant by the MTA. Therefore, applicants should call 877-337-2017 to obtain the application and an appointment for an in-person assessment. The application requests, but does not require, medical documentation. However, an applicant should provide a detailed letter from her treating psychiatrist or therapist describing the applicant's functional limitations. A letter stating a diagnosis is not sufficient; the letter should describe the symptoms that prevent the applicant from taking public transit. An AAR official reported to MFY that the MTA does not defer to a person's own doctor, but instead relies upon its own assessment. Nonetheless, it is optimal to submit a detailed letter from a treatment provider because it will increase the applicant’s chance of being approved.

All applicants are required to undergo an in-person assessment that primarily involves testing for physical disabilities. AAR's reliance on in-person observation over reports from a person's doctor can make it very difficult for a person with a psychiatric disability to be found eligible. For example, while a physical test can be given to an applicant who claims that a physical disability prevents her from climbing stairs, it is more difficult to ascertain how an applicant’s anxiety disorder impacts her use of public transportation. An applicant with a severe anxiety disorder, for example, can appear calm at an assessment, leading to a denial of the application even if she provided a compelling and detailed letter from her treating psychiatrist or therapist about the functional limitations to her accessing public transportation caused by the disorder.

The Disability Rights Education and Defense Fund recommends that people whose disabilities are not easily evaluated by an in-person functional assessment tell the evaluator that their disability cannot be assessed in that format. An applicant with a psychiatric disability should direct the evaluator’s attention to her doctor’s letter, and explain why her limitations cannot be observed during the in-person assessment. An applicant who cannot advocate for herself can bring someone—a friend, social worker, therapist, or family member—to help. Because the eligibility determination relies so heavily on in-person observations at assessment centers, rather than on reports of functional limitations from applicants’ treatment providers, the AAR assessment may have the effect of discriminating against people with psychiatric and other invisible disabilities.

How to Appeal a Denial of an Application

If an applicant is denied AAR, she has a right to an appeal. But the AAR appeals process suffers from several procedural problems that prejudice appellants. The agency is required to provide appellants with a notice that states the reasons for the finding and “an opportunity to be heard and to present information and arguments.” However, the AAR notices are not individually tailored to the applicant. The AAR notices simply provide a laundry list of denial reasons. For example, the denial notice for a person who applies due to an anxiety disorder may include a list of irrelevant and confusing statements about physical disabilities, such as “You are able to go up/down subway steps. You are able to travel three to four blocks to fixed-route bus/subway station.” It is difficult for an applicant to prepare for an appeal based on a notice that contains only conclusory and possibly irrelevant statements.

The difficulty in preparing an appeal is exacerbated by the fact that the MTA does not provide the applicant with a copy of the record of her case prior to the appeal, nor does it have a process for the appellant to secure the record prior to the in-person or written appeal. In fact, the MTA has told MFY that it has no obligation to do so. The only means to obtain the record is through a Freedom of Information Law (FOIL) request, which is time-consuming and requires the appellant to pay for copies of her records. Although MTA points to the availability of the FOIL process as a possible remedy of its failure to provide the record on appeal, MFY has learned that it refused to adjourn an in-person hearing until the FOIL records were produced.  Without the record, an appellant cannot examine the assessments or other evidence relied on by the agency when it denied her application. This leads to an applicant being confronted at the hearing with evidence she's never seen, depriving her of the opportunity to prepare a challenge to the evidence.

Finally, although the MTA offers two options for an appeal—in writing and in person—it has no publicly available written procedures that describe its appeal processes. Based on the information we have been able to gather, MFY recommends the in-person appeal because testimony from the applicant and, if possible, a mental health professional can be more compelling than a paper review. In addition, a paper review suffers from the same defects as the initial assessment—the decision will be based primarily on the AAR in-person assessment, which the MTA weighs more heavily than an assessment by the applicant’s own treatment provider.

MFY Legal Clinic to Assist AAR Applicants

To try to remedy these and other problems, MFY Legal Services, Inc. and Pillsbury Winthrop Shaw Pittman LLP are launching a pro bono project to help people obtain and maintain eligibility for AAR services. We’ll be holding AAR Legal Clinics at independent living centers, senior centers, and other community locations. During those clinics, volunteers will provide a range of services, including helping people fill out the AAR application, request MTA records regarding an adverse eligibility determination, appeal a denial of AAR services to the Paratransit Appeals Board, appeal a suspension of AAR services, or file a complaint about AAR services with the MTA. To find out the details regarding the next clinic, please call 212-464-8110 or go to www.mfy.org.