Tuesday, January 29, 2008

Turning into the Sun

by: Anna Pearce, known as actress Patty Duke, is the author of Call Me Anna and A Brilliant Madness, and has served as a NAMI spokesperson.

When I was diagnosed with bipolar disorder in 1982, my immediate response was, “Thank God it has a name—and a treatment!” Within 10 seconds, it was like turning into the sun from a very dark pit.

Was there some self-consciousness about being a person with mental illness? Yes, but it was short-lived. About six months after my diagnosis, I was on medication, feeling balanced, and I realized that I had an opportunity.

As an actress, what I enjoy most is pretending, connecting with the child in me. In the theatre, I love hearing the energy come back from the dark. That’s the most fun, connecting with people. Television and film are other mystical worlds for me, as I have to translate with my eyes.

Playing Helen Keller in “The Miracle Worker” was a kid’s dream—I got to beat up an adult and people laughed. Acting in that role was when I first began to understand what it meant to transcend connection with another actor. Between actress Anne Bancroft, who played Annie Sullivan, and I, the biggest miracle was us together.

Portraying Helen exposed me to different stigmas in society. The power of the stories of Helen and Annie’s lives became infused in me at such a vulnerable age. Helen has been an example my whole life. I was involved with causes for the blind, for instance, but because my illness is so immediate to me, I was compelled to focus on advocacy for others with mental illness.

I knew that I had a certain amount of celebrity, a certain amount of access to the press. I could go public and reach people. Like Patrick Kennedy, this drive comes from a pure place.

Both writing Call Me Anna, my autobiography, and acting in the television version were difficult experiences, but I just wanted to get the word out about mental illness.

Almost 26 years later, I know that this is my calling in life.

If you know something this good, you have a moral obligation to share it.

At first I thought, If I can reach one person, that will be enough. I’ve learned that was a big, bold lie.

I want everyone!

There is no reason for anyone to suffer without treatment. I know that so many of our social ills come from a mental illness of one form or another.

I can hope pretty deep. I hope that people who are suffering will find that there is a process that will stop the suffering.

I was recently appointed to the Center for Mental Health Services National Advisory Council and I know there are truly wonderful mental health facilities out there. We need to build a stronger network.

When I speak to audiences, there’s part of me that wants to run. I focus on the people when I’m speaking…everything from that point on is easy. Floodgates open, we compare notes.

Maybe I’ll say something that resonates. I always walk away feeling that I’ve been refueled.

This is the closest I’ve come to understanding communion.

To those who have been recently diagnosed or discouraged by stigma, I say, “Welcome! You’re on the path. This may not be what you want your recovery to be yet, but it will be.”

80 comments:

mountainowl said...

Reading A Brilliant Madness was a turning point for me in learning about my bipolar illness. Thank you, Anna for making a difference in my life. Imagine the difference we can all make together, helping each other.

Thank you also for speaking out at the NAMI press conference that released the landmark Grading the States report. www.nami.org/grades. One more way that you and NAMI have made a difference.

rckayla said...

Thank you Anna Pearce/Patty Duke for writing this blog entry about your illness. I loved your blog as much as I did your book "A Brilliant Madness!" In order for our loved ones and other's to understand and support us, we must write and tell about what we're going through. If there was no stigma attached to having a mental illness, more people would seek help. And wouldn't go through a lifetime of wondering "what's wrong with me?" Thank you for also being an advocate for NAMI, and letting the world know that suffering with a mental illness is the same as a physical one.

Micki said...

Dear Ms. Duke,
My 23 yr. old son who had schizophrenia was run over and killed by a train 5 months ago. Over the last four years it has been a tremendous struggle to get decent care for him through the mental health system. You would not believe that in this day and age things that he endured go on but they do and to many others as well. He suffered many injustices including being assaulted and fell through the cracks over and over. He was housed in run down residential motels with no toilet in the room, no phone, cock roaches, and no locks on the doors with parolees, sex offenders, other mentally ill and drug addicts. Even in his death he had no dignity. The newspapers published a picture of his mangled dead body on the tracks and called him a transient (which he had never been) and the article also showed an emergency person picking up a part off the tracks. A horrible image I will never get out of my head! One of the main points of the story was how traffic was held up due to this accident. My son was a good person who would do anything for someone who asked and who would never hurt a fly. He didn't deserve the treatment or lack of treatment and the indignities he suffered over the last few years of his life and to die the horrific death that he did with a crowd gathered around gawking at his body. His four year old brother will never get to know him and he won’t see him grow up.
I would like to get his story told and would like to ask you if I could speak with you further. There is so much more to this story and I need someone to help me be the "voice". I don't want another soul to suffer what he did. He wouldn’t want that either. Many others are afraid to speak out because their loved ones are still in the system. I am not afraid anymore because I already lost what was most valuable to me! Please as a mother/activist I am turning to you to help me. I am a member of NAMI San Mateo, CA and can be contacted through them.
Thank you!!!

celebopinion said...

Dear Anna,
I too have been heartened by your public discussion of mental illness. One area that I felt needed some work was helping with student loans. Many people with bipolar disorder or depression took out student loans to go to college, then the disease struck and all bets were off. Many are not able to work full-time to better manage their stress, and this makes it very hard to pay off their loans. The federal government only will discharge loans if a person is *totally and permanently* disabled. If one is partially disabled--in other words able to work a little bit--then there is no relief. I thought this issue was important enough that I started a 527 group (www.disabledalumni.org) to advocate for changes to help disabled alumni. Financial stress from having to pay back loans on a low income is likely to be exacerbating the mental health of many people across the U.S.

There's a lot of work to do, and we're all doing our part.

Best wishes, and thank you for the work you are doing,

Andrew Straw

Sandra. said...

Dear Ms. Pearce, I will buy "A Brilliant Madness", read it, and pass it on.

Educate, educate is the name of my game. I speak to officers during CIT training and recently became a Peer-to-Peer mentor.

Thank you for all the wonderful work you do. Please keep it up!

mustangbarbs said...

I am glad Patty shared her story. My son was diagnosed 9 years ago. He has paranoia schizophrenia with Neg effects. He is in Napa state hospital. I am going through the process of becoming a teacher for Family to Family. I want to understand him more and to be able to help others. I also have quite a history now with all that he has been through, and my expericence and help others.
Thanks to anyone who shares their personal stories...Barb

Anonymous said...

Thank you, Anna/Patty,
This blog entry was beautiful and inspiring. I am so grateful that you are speaking out about the issue of mental illness.
I have OCD and an incurable cancer. Which has been more painful for me? The OCD, no question about it.
My sister has schizophrenia. She has suffered greatly. I can't even imagine what her world is like. She also has diabetes. She said to me once, "You wouldn't believe how much more respect I get as a diabetes patient than a mental health patient". I pray for the day no mental health patient feels this way.

suzie-q said...

Anna, Thank-you for stating that we need to reach more than one. I have been diagnosed with bi-olar type 2 for years and I had volunteered at a COS Agency for 4 years and that is where I was educated on mental illnesses. My children donot understand my illnesses. I wish they'd take the time to because they would understand me then and maybe themselves. I always liked you as an actress and I always dreamed of becoming one. Everyone said I'd be a good one but it never happened yet. I plan on writing a book myself. I also have an inner child and it is very hard to deal with sometimes. Again thank-you so much and this mental illness doesn't care who you are. It affects everyone. Suzie-q,Columbus, Ohio

One Lucky Bastard said...

Thank you, Anna, for all you do to be a voice for those of us with mental illness. I was diagnosed 15 years ago with bipolar illness. It took a long time to get the right medications for me, and I feel I lost years of my life. I can't get those back, but the life I have now is good and full of opportunity and blessings. Because of people like you, people like me can more easily find a place in this world.

janesbluheaven said...

Dear Anna,
I am diagnosed with BiPolar Type 2 and PTSD. The last 8 months I have been in a depressive state (I am getting meds adjusted frequently), but I write in curiosity; do you have times when your moods fluctuate? Do you still have moments of mania or depression?

Bridgett said...

Reading Call Me Anna opened my mind up to acceptance of the mental illness diagnosis was finally correct. It was hard for me to open my doors of madness and realizing I was not alone helped tramendously. I can honestly say one of the biggest positives for me now. Is with everything my three children endured with me over the years we are closer than ever. Thank you so very much for being open with yourself and giving me what I needed to continue my journey in life. I can honestly say it has not been easy, but when ever I had doubts I so often thought of your strength and will power for your children. My children even though adults now with families of their own are still my inner strength. All I do know is I'll never be able to make up for the lost years we had, but I can most certainly try by staying in control. So yes I do agree helping each other is the best way for us to Imagine a better life for ourselves and others.

CM said...

I would like to have a NAMI widget for my blog--maybe the widget can take people to a donation/NAMI sign-up page?

http://carolinamaine.blogspot.com/

Anonymous said...

I was a Mom at 17 and worked really hard until I was 25. I graduated university, two long relationships and being a good Mom.

i had my first manic episode was when I was 29. I had a couple of migraines that put my in the hospital twice before, but I didn't feel the stress of my younger years until years later.

The first time was the hardest and kept me in the hospital lock-up for two months. I told everyone every delusion I had and refused medication.

The court forced me to take thorazine and I was released after doing everything the hospital said. I also stopped telling anyone my thoughts.

My second episode in 1999 and my last in 2006 simply resulted in take valproic acid and stabilizing. However, my family and friends have not stabilized with the proper support for Bipolar.

No matter how much I want people to respect mental illness as an illness, they will not. Too many people think mental illness is just a weakness, a flaw or self inflicted.

I told everyone about my last episode to try to gain support and educate people about my condition, but I was treated like I screwed up in some way and did not deserve being treated as being sick. I lost my jobs and have not been able to get another unless I keep my mouth shut and not tell anyone I take medication everyday for bipolar.

Now I am 44 and understand a lot about people living on the streets. They had no support when they needed it and then their families did not help; not with money, but with understanding!!

CM said...

I second that regarding student loans...

I have a loan mortgage literally.

Although, I do think I can work with my illness--and I very much want to do so.

I am new to the job market...

I think working is good for consumers, but I think they should qualify for loan reductions (cases like mine) because the stress of huge loans and low incomes can exacerbate mental illness problems.

omtattoo said...

I am the sister of a woman with a mental illness called schizophrenia. The painful reality of this heart-breaking illness that takes loved ones has kept me in powerless form. I've been on my own healing path and feel now I'm in a place to take action for my sister and mother.
For at least 13 years my sister has lived with this illness under my mother's roof with no medication. It was her choice not to continue the medication in 1992 after her first visit to a psychiatric ward, and also at that time she left her husband and two small boys. Her last 72 hr. hold was in 1995, after an attack on my mother, who she sometimes doesn't think is her mother and calls her by her first name. I am in the process, again, of getting financial assistance from SSI for my sister and must prove that she is disabled. But her paranoia is keeping her from signing the needed documents to continue this process. On my visit last weekend I did my best to let her know there is money for her and from what my mother told me she did hear me.... but when I called 3 days later she hung up on me....I was told by a NAMI advocate just to continue the process even if I can't get her signatures.
At the SSI office I'm told I have 10 days for her to sign papers. Suggestions appreciated ...

jeanne said...

Try using your sister's delusions in a way that she will trust that signing the papers is nothing to fear. Many people have had success in getting treatment for their loved ones with schizophrenia by telling them, for instance, that their medication is for IBS or chronic fatigue, etc. The book "I am not Sick and I don't Need Help" discusses how to partner with someone with an illness. You might find some ideas in there. Getting SSI is fairly easy to get for someone who has been seeing psychiatrists, therapists and who has had hospitaliztions. Make sure that a trusted "payee" is assigned to manage the money as well. It is not a lot of money, but it helps. If you live in CA, getting Medi-Cal is instant once someone is approved for SSI, and this is worth its weight in gold.
Good Luck.

Jeanne

Nico said...

Anna, you are an inspiration. Thank you for speaking up about your illness, for your advocacy, and for helping to fight stigma. It is because of people like you that I was able to find the road to wellness...

Andrew, I hope you revisit this blog. I am a full-time working individual with Bipolar I. I am also paying off about $50 thousand in student loans. To date, I have not had to default on my loans.

A few years back, I was seeking a professional degree. After two fun rounds in the hospital and a correct diagnosis, I dropped out of the program. Not receiving the degree not only broke my spirit and self-esteem, it also left me with a rather big tab to pick up. So, I packed up my bags and moved home.

At first, it was a struggle just to make ends meet. I decided to consolidate my loans and repay the money I owed over a 25 year period. With conditions, I was able to live with a family member for a few months until I was able to get up on my feet (or at least out of bed). I started working part-time at a café I could walk to, making just a little above minimum wage. As I started to get better and manage my illness more effectively, I found work that paid a little better. Of course, I did have a few set backs… An employer asked me to leave a job, friends walked away when I was depressed and family members didn’t always know how to help when I needed them to. At times, I had to commute by bus 3-4 hours a day for decent work.

Today, I earn a reasonable income and receive benefits. I am also able to make rent, pay bills, and enjoy dinner and a movie out with a friend on the weekend. For once, I am not living paycheck to paycheck. Student loans no longer engulf a huge portion of my paycheck. In a few years, I hope to buy my first condo. Maybe in 10 years, I’ll get a graduate degree (using the pay as I go principle). Serving bagels, selling books and doing secretarial work all helped me to build the confidence I needed to get better and to find the road to wellness. These jobs were stepping stones to get me to where I am today.

In the future, I hope individuals who are temporarily disabled find solutions to help them meet their loan responsibilities. I thank you for your efforts to do this on their behalf. I also thank advocates, like Anna Pierce, who provide some of the best leadership needed to help consumers get back on their feet and to live up to their potential.

merimaker said...

thank you so much for your hard work in this difficult field.

i have many health problems; and when i see a new heath care provider. they spend more time questioning me about my bipolar state before treatment then my health condtions.

i wish so much that we can explain that mental illness is not the same as criminal behavior and they are in no danger.

living in the state of iowa; where with a grade of f its hard to explain without support of professional and the press.

thank you for all that you do and for openning the door to more discussions.

NESundgrdboss said...

I have just returned from the funeral of my dear friends 16 year old daughter. She took her own life Sunday night. Mental illness a contributing factor, and as a mother of several children with severe mental illness, our worst nightmare. It is with a heavy heart, that despite loving parents, supportive friends and family, and assorted support services, that we realize that the deep abyss of darkness was more than she could bear. As a mom, it renews the worry I carry around everyday, wondering if I the meds are right, her enviornment safe, treatment teams the best that they can be for her, does she know how much we love her. I can only continue to hope and pray that our daughter knows how very much we love her, that no matter how hard the road she travels is, we will be there cheering her on or brushing her off, and that nothing will ever change that.

Anna, I just wanted to thank you. It seems a tad ironic that today of all days, when my hope and faith are on the low side, that you should appear in my email. Mental illness can be terminal, we all need to raise our voices louder, use whatever gifts we have been given and continue to educate society, until we are heard and mental illness no longer is associated with the stigma it carries today. There is still so very much to be learned by our society, and, as a society,so much more we can and should be doing.

Anna, keep talking and sharing, knowing that today you gave strength to a mom who was floundering in despair, reminding her of how very powerful our stories can be.

Be well. Be safe. Be strong.
Teri Otis

wingstofly said...

Anna,when I was a child I adored Patti Duke. Of course, as it goes, tv stars were "perfect" to me. Then later, followed life as I knew it, isolated, not knowing why I felt so different. My wish is that no one would have the feeling growing up that "something was wrong with me", no matter how hard I tried to fit that is the feeling I had. That was then, but now ...!!! We can make a difference!

I'll be honest, I haven't read your book, but WILL, for my recovery needs you strength, hope, and experience as we say in AA. I'm 20 yrs in Recovery from alcohol and drug abuse, what I thought I needed to self medicate....to escape the feelings...although it only worked for such a short time...

Any way, God Bless you for what you are doing. We need more like you to stand up and say so!

Anonymous said...

My case manager is Leanna Rush, I can't find how much it costs to belong to NAMI without going to a lot of steps on NAMI site.

Anonymous said...

Where do NAMI chapters meet, perhaps this would be a useful funtion for a clubhouse to host NAMI meetings?

Anonymous said...

Jim & guidedog Dave feel our casemanager should be nominated a NAMI for visiting her blind client who has a mental illness when he was in a hospital Pittsburgh Pennsylvania. Jim and guidedog Dave would also like to recognize how much are casemanager Leanna Rush spent so much time visitingme in my home, when attending physical therapy. Not many people would spend so much time with a blind person who has a mental illness. Thanks for considdering this nomination request?

Anonymous said...

Jim and guidedog Dave are seeking prefered member of clubhouse to transport blind person to clubhouse meetings or other interested parties interested in transporting blind person to support groups? For further info please contact casemanager Leanna Rush, llrush@upmc.edu or 412-389-1188. Thanks for everyone's assistance?

Anonymous said...

If my guide dog and I decide to signup for excersise group for March at Western Psych Institute Pittsburgh Pennsulvania my physical therapist would like my guidedog and I to walk briskly in safe settings with no fear of getting lost, so could we start excersise walking group? Afternoon would be better although if somebody calls casemanager Leanna Rush offer ride more ontime dependible than www.projectaction.org, time may be little more flexible. Thanks for assistance?

Anonymous said...

I've read a Brilliant Madness and I must say that Patty Duke aka Anna had a really bad case of Bipolar Disorder. Unmedicated and being really famous was quite a combination. I'm SZ-A and read a lot of the messages on the SZ-A and Bipolar message boards here at the NAMI site and it has helped me so much in learning about the illness and what others are going through. For Patty Duke to go public and describe her experience back in the late 1980ties when there weren't any Bipolar websites and message boards or much awareness of MI by the media must have been so scary. We all must be grateful to Patty Duke to have had the bravery to go public and raise awareness and combat the stigma that MI carries. I am so very thankful for her. She is a fantastic actress also. So people really respect her and her messages to the public about her life with the illness. She is a great spokesperson for us.

longsuffering said...

It is certainly wonderful what NAMI and others affected by serious mental illness have done to improve the lives of those affected in recent years.

I have what might be described as moderate mental illness -- probably a personality disorder, though never officially diagnosed as such. Well, I tested positive on 2 assessments, but one place was looking for people with BPD and I didn’t qualify and another was a psychologist who specialized in dissociative disorders, which I had reason at the time to believe I had, so even though I tested positive for obsessive-compulsive personality disorder, he continued to treat me for what he thought was dissociative disorder, even though I did NOT assess positive for that.

45 years ago I was hospitalized with anorexia nervosa. I recovered and accepted an identity as a “mental patient”. That certainly helped me to live longer than holding onto an identity as an anorexic. I finished college, went to work, did OK, got married, had children. When I had problems with depression I would go to a psychologist, psychiatrist, or counselor. That was the thing to do so I did it. Never helped much, but I went. I will not bore you with the emotional effort and money I went through, trying to do therapy “right”.

According to some authorities, personality disorders cannot be cured. According to the Mayo Clinic’s website, “People with personality disorders have traits that cause them to feel and behave in socially distressing ways, which often limit their ability to function in relationships and at work.”

For the last 5 years I have been going to a support group. That has helped where individual therapy did not. Because I found out what it really was to BE accepted I could understand how much I had previously felt unaccepted. Only I didn't know it.

There has been a lot of legitimate interest in Borderline Personality Disorder recently. From what I have read, this can be a terribly distressing and disabling illness and so the interest is welcome. It is included among the serious mental illness that NAMI covers.

For the rest of us moderate to high functioning people with personality disorders, there is no advocacy organization. That’s understandable, since many of us tend not be very social or at least not very socially effective. So -- no generally accepted effective treatment and no advocacy.

Would NAMI or anybody reading this blog be interested in starting such an advocacy or study group? Again according to the Mayo website, “as many as 15 percent of U.S. adults have one or more personality disorders.” Since we tend not to work or live our lives up to what is seen as our potential, that’s a lot of waste. Not to mention the enormous pain and distress that are common parts of our lives every day. It seems likely that many people suffering from bipolar disorder and other serious mental illness might also have comorbid personality disorders which contribute to their distress and the mortality.

Anonymous said...

We will definitely buy “A Brilliant Madness,” read it and later share it with our son.
Our son, who will be 11 years old next week, has been diagnosed with bipolar disorder, ODD, and ADHD. In addition he has a learning disability, and as one of his therapist said it best, "a smorgasbord of things."

After years of infertility, we adopted our son when he was two months of age. This was a private adoption, and later information revealed that possibly both or one of his birth parents were perhaps bipolar.

Regrettably, despite three hospitalizations, partial hospitalization, out-patient and later in home therapy, medication changes/additions, IEPs, therapeutic school (which is not actually very therapeutic as we thought it would be), he is progressively getting worse and we have been advised to consider residential placement. Residential placement was discussed as they feel our safety is at risk as he is quite impulsive and although remorseful, he cannot control his anger and verbal and sometimes physical outburst.

We have been disappointed with the services. My son’s teacher initially said he was “immature,” and his psychiatrist refused to listen or hear us when we said we felt it was more than depression, and when we suggested bipolar disorder. We found another child psychiatrist who came highly recommended, and he did confirm that our son had bipolar disorder. We were unable to this doctor as he did not take any insurance and we would not be able to continue long care treatment.

We went to another psychiatrist with the diagnosis of bipolar disorder. At our last visit in September 2007, he presented a treatment plan to take our son to the ER if he had another outburst as he may need inpatient. We proceeded to follow-through with his treatment plan recommendation, and despite seeing this provider for almost two years he never called the ER doctors, he never returned our calls, and he didn’t even call the his own hospital.

My husband and I are brokenhearted and also disappointed with the system and the thought of residential treatment, but we know our son needs more. We would appreciate any information regarding residential placements and/or other recommendations. We recognize that this history is limited, but we are seeking any guidance and help.

Thank you allowing us to share.

Anonymous but seeking help

Anonymous said...

Can caseworkers and therapists be in-clinics?

Anonymous said...

Can Mimi Smith be Jim & guidedog Dave's casemanager?

Anonymous said...

Dear Mrs. Duke,
My name is Raul Gonzalez Jr. I relate to everything you said in your testimonial. Life is really hard for me right now and with a world of knowlege and the skills to make anything happen at my fingertips.?.?
If there was ever a time where you and your organization could possibly help a young bright individual who has nothing to loose....
Today is the day.. Please return my inquary. 1(559)972-0206
(verizon cell#)
37711 Millwood Dr.
Woodlake, CA 93286

deathb4dishonor14@yahoo.com

Rick Hill Jr. said...

awesome read!

Mel said...

I appreciate the openness of Anna-Patty. Stigma fades as we share the pain of the mental illness with those around us.
My son, a victim of Bi polar for the last thirty years found in patty and the members of our NAMI group the strength to move out of this shell. He remains subject to periodic mood changes and depression. But in the clear moments he finds courage for living.
WE have to continue to spread the word and help folks recognize that their is some hope.

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Anonymous said...

Thanx so much Anna/Patty...I will definitely be buying anything you write to keep me updated on this illness. My daughter Lauren, 25 years old, just just had a baby five months ago...we all thought it was post-partum depression. She was like she was before but, only worse. We suspect bipolar...the doctor is treating her for depression but the medicine is only making her have more manic episodes and more frequent.
I am going to my "first" NAMI meeting tonite for more incite into this illness and hopefully more support and understanding for friends and family.
It's like laying one little brick at a time to build a road so that maybe someday my daughter can find her way back to happiness...keep laying those bricks Patty!! We need more angels on our shoulders like you...more than you know! God Bless! (Praying with you here from Ohio)

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