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September 25, 2006

Triumph of the Human Spirit

I saw the preview of a bold theatrical presentation on bipolar disorder (also known as manic depressive illness) at an off-Broadway theater in New York City on Thursday, which was funded by an Edelman client. The acting company presents three vignettes on living with someone who has bipolar disorder. In one skit, a young woman buys twelve varieties of household cleaner, then proceeds to remove spots and soot from the rug and the window sill, starting at 2:30 in the morning, reaming out her husband for reining in her enthusiasm. Intended to be a press event on Tuesday the experience thrust me back in time to my own home over 30 years ago.

I had just arrived home from my freshman year in college. I was informed that my mother had taken to her bed. Strange, I thought, she couldn't wait to see me, at least according to our most recent phone conversations. Then the bedroom door burst open and my mother strode down the hallway in our apartment, stark naked, mumbling words like "wang, bang, mang, hang." She was in a hurry, oblivious to her nakedness, unable to do more than nod in my direction. She strode back and forth in this agitated state for a half hour. I called my father at the office, begging him to come home, while I persuaded my mother to don a bathrobe. She was taken to a mental institution for a few days while the doctors stabilized her. She had been so profoundly depressed that her physician had prescribed "an upper" which sent her beyond normal into a super-mania.

My father recounted her descent into manic depressive illness. This had been a closely guarded secret, even from her three children. We always thought it a bit strange that my mother would be able to sustain such incredible bursts of energy. She would be able to work with us on our homework, accompany my father on one of his myriad business dinners and organize a major charity event. Then she would collapse, taking to her bed for a few days of what seemed to be normal R and R. We attributed this to her perfectionist streak and a periodic long nap. For her, it was always the needs of others that had to come first, for us it was easier not to know so that our lives could proceed as usual.

We learned early on that her father had died when she was only four. We had been told that he drank bad bathtub gin at a speakeasy during Prohibition in the early 30s, which poisoned him. Now the true story came out; my grandfather had also been a manic depressive, had not been treated, and killed himself in despair.

My mother is fortunate to be in the first generation of patients who have a range of anti-depressants that can be used to moderate mood swings. It seems that each of the drugs has a span of effectiveness from 18 months to 2 years for my mother. Then she is again part of a personal clinical trial, in the experimental phase with multiple drugs, looking for that middle ground that does not dull her vibrant personality but also does not allow her to fly into the stratosphere. There have been difficult moments while she is in these interludes, such as her total loss of control in front of the Regency Hotel in New York City a decade ago, when she verbally attacked my father, the doorman and even the late Bob Tisch, the hotel owner, about everything from not getting a taxi quickly enough to the lousy food and pathetic service at the hotel. When asked about her behavior only 30 minutes later, she remembered nothing about the incident.

Don't feel sorry for Ruth Edelman. She does not want that. She believes that God gave her this condition because she could handle it. She has become an outspoken advocate for Federal funding of mental health, testifying before Congress. She has tirelessly lobbied for workplace rights and business reimbursement of mental health expenditures. Now well into her seventies, she is proud that she has maintained an active and normal lifestyle.

Look around you and see whether any of your friends or colleagues exhibit this type of behavior. Then go with them to a psycho-pharmacologist and make certain they are getting help. And don't listen to them when they quote from "Touched With Fire: Manic Depressive Illness and the Artistic Temperament," suggesting that the manic depressive state and artistic achievement (or madness and genius) are related and that you should not deprive them of their potential for greatness. It may be true that Mendelssohn, Byron, van Gogh, Coleridge, Sylvia Plath and other geniuses were manic depressives but author Kay Redfield Jamison's real conclusion is that lengthy calm periods may allow more sustained productivity. My story has a happy ending; make sure that yours has the same.

Posted by Edelman at September 25, 2006 1:09 PM

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Comments

Richard, thank you for the post. I also have a parent (father) with bipolar disorder that first manifested when I was seven years old. Thank goodness my mother decided to tell all of us (4 children) what Dad was going through. I have diary entries saying ?Dad had to be taken away to a hospital today. He will not be coming back for a while. He has to take medicine everyday forever.? Because I grew up with that knowledge and an understanding of what bipolar disorder is, my family was able to help another person. When my older brother started to manifest at the age of sixteen, we were able to connect him with doctors and medication to help him succeed. My father and mother have not had an easy time with the illness and the social stigma of having a "mental disorder" was never easy. As a result of being an open book with our friends and community, many additional opportunities to help others have been afforded us and all my siblings do not have to harbor a ?secret.? Knowledge is power and you are exercising a powerful muscle by telling your story.

Also, I agree with your statements about treatment options. I have seen my father at his most frail moments without his medication and honestly, it is frightening on both ends (depressed and manic). Granted, we may be a family of "geneses" but functioning in everyday society is something that is very important to each of us. Thank you for using your personal experience to address that hotly debated topic.

Thank you again for posting this message and taking the time to tell your story. You are helping someone today!

Posted by: Michelle at September 25, 2006 2:21 PM


Thanks for posting this, Richard. What's the name of this play, and this theater? I'd like to be able to recommend it to people i know in the NYC area.

Like you, I am close to some people with bipolar disorder, and I know how difficult this illness can be -- not just because of the difficulty in treating it effectively, and not just because of the chaos it causes, but also because of the layers of shame and secrecy often attached to it.

As a matter of fact, about a year ago I did a survey on my weblog Contentious asking people about their comfort level with various types of personal disclosures on web sites that they read mainly for professional reasons. The second most negative reaction I found was to a hypothetical disclosure of depression -- a very common mood disorder.

See: http://contentious.com/archives/2005/08/16/survey-question-5-disclosure-of-mental-illness

Shame and fear are two big reasons why any kind of mental illness goes untreated, mistreated, or under-treated. And obviously, with lack of understanding of mental health issues so widespread and mentall illness still being generally taboo, mentally ill people do have reason to fear others' reactions.

I figure one of the best things we can do to improve the outlook for everyone's mental health is to be willing to discuss mental illness frankly and in constructive terms -- as you've done here. Bravo.

- Amy Gahran

Posted by: Amy Gahran at September 25, 2006 3:28 PM


How refreshing to hear people talk so candidly and openly about Mental Health.The fear and stigma attached to these issues such as bipolar are still very evident, especially in the UK. Here in the UK on BBC1 they are running a documentary series presented by Stephen Fry interviewing celebrities who suffer from the disease. Stephen Fry who has bipolar disorder says "There's no doubt that I do have extremes of moods that are greater than just about anybody else I know." The series is great as it has really lifted the lid on the issues surrounding mental health,exposing the disease and showing how it affects suffers and their family. In my support I am running in The Great North Run this Sunday 1st Oct 06, a half a marathon in the aid of Mind the Mental Health Charity and lots of lovely people here at Edelman London have sponsored me- so thank you all so very much.If anyone else would like to donate to this event, they can do so my clicking on the link below http://www.justgiving.com/lindyloo I must remember when running that exercise is excellent for your mental health or so the voices in my head tell me! Posted by Linda Hall at September 26, 2006 5:35 AM

Posted by: Linda Hall at September 26, 2006 5:46 AM


Richard,

Your dad gave me my very first job 20 years ago and I have always considered him to be one of my role models for a number of reasons both in business and in life. While I didn't know of your mother's illness I am not at all surprised at how successfully she and your family have faced these challenges.

My daughter has a hearing loss and has had to where hearing aids since kindergarten. We have always told her that this was her gift from God and what she chose to do with it was up to her. For her it was never an excuse but a reason to do even more.

It is hard to remember that no matter what challenges we are given in life it is always better to own them as a part of the journey!

Thanks for the great post!

Posted by: LaVonn (Plummer) Schlegel at September 26, 2006 11:41 AM


Richard,

Thanks for the courage to deal with a personal family medical challenge head on in your blog. Let us pray that it spurs others to seek the help they need for themselves, family members and friends. You are an inspiration for all of us who try to deal with the world in an open and truthful manner. Not only good for us personally, but also professonally as PR counselors.

Bill Church

Posted by: Bill Church at September 26, 2006 1:46 PM


Richard - amongst the many things I have read today, this is the standout piece. It is deeply personal but relevant to us all - your message is powerful and affecting.

Posted by: Joanna Tidball at September 26, 2006 4:25 PM


I met Marilynn Mobley from your Atlanta office at a Duke University event last night. She directed me to your blog after I recalled with fondness your parents. Thank goodness for your openness on the subject, and that your Mom sought help. I know two marriages that the condition ravaged, and I am happy to know your parents are doing well together, and that your mother plays an active role in helping others affected. Best regards to all your family, especially your mother, who was most welcoming to me and my sister in Chicago years ago.

Posted by: Ann Bierbower Lally at September 30, 2006 8:50 AM


Your story reminded me of Chicago Magazine's Rebecca Cutler. Her parents created a foundation in her honor:

http://www.rebeccacutlerfoundation.org/rebecca-dream.html

You should get in touch with them.

Sincerely,
Rita

Posted by: Rita Desai at October 2, 2006 9:40 AM


Richard,

I was actually looking at your website (since its content has been praised) and found your blog. Just sent it to my daughter Meredith, a college sophomore who was diagnosed bipolar at 14. In hindsight she's likely had it since early childhood. Meredith is remarkable --she's one of the most articulate and resilient people I know. She is also very open about her disease. Not only does she have bipolar but she struggles with learning differences and another chronic illness as well. She is starting a mental health advocacy group at her school Alma College. In high school she testified before our state legislature for better treatment and insurance coverage for those with mental illnesses and even wrote her college essay about being bipolar.

Posted by: Maura Campbell at October 5, 2006 10:26 AM


Thank you so much for sharing this story!

Although I am not very familiar with manic depression, major depression runs in my family. Therefore, I have very strong opinions on this topic and I am extremely passionate about creating awareness of this widespread and often misunderstood illness. From my experience, understanding depression as a medical illness instead of a "character flaw" usually only comes when someone you know and love experiences it. Suddenly, the magnitude and devastation of this illness becomes so real, and you truly recognize the need for treatment.

I always say that having a mother, and several other family members who have had depression, is both the most negative, and the most positive aspect of my life. To see someone you love become a different person because of depression is devastating; but to see them overcome the illness and emerge as a stronger person - ironically - makes it all worth it.

Much like you, my story has a happy ending. Every one of my family members who has been diagnosed with depression has also reaped the benefits of anti-depressants, making me a strong advocate for treatment as well. They are all leading happy, healthy and fulfilling lives and, along with your mother, have garnered a great amount of respect from everyone that has the honor of being around them ... myself included.

Posted by: Jamie at October 10, 2006 3:13 PM


Dear Richard:

In a phone call last night with Elaine, she happened to mention your blog on your mother's bipolar disorder. I got up early this morning to read it, and was bowled over by what I read. Not for the reasons you might first assume, however.

My 11-year-old-son, Patrick, has early onset bipolar disorder. We had known something wasn't quite "right" with Patrick from the time he was 3. After 5 years of taking him from one therapist or psychiatrist to another, and chasing many misdiagnoses, we were lucky enough to find a professional at Mass General who could tell us what was going on with him.

I am so proud to see that you're sharing your mom's diagnosis with the world via your blog. If I had known the extent of bipolar disorder in Steve's (my husband's) family, we might have saved years of agonizing over what was wrong with our little boy, and wondering why we were such awful parents that we were raising a son who threw hour-long temper tantrums at the age of 7, had no friends, and couldn't seem to stop beating up his big brother.

I had heard stories that Steve's paternal aunt and possibly an uncle, might have suffered from manic depression, but it wasn't talked about in his family It wasn't until we got Patrick's diagnosis and I called up his aunt in Michigan to ask her if it was true that she was bipolar, that I found out, "bipolar disorder runs rampant through our family" (her words). Now I've taken it upon myself to talk to Steve's extended family about this disease and what they should look out for in their own kids. I wish my in-laws and some of Steve's other relatives realized the potential harm they were causing by pretending it's not happening and thinking that maybe it would just go away if they ignored the problem.

I always heard that parenthood brings more worries with it than any other change in your life, and I never believed it more than when I had a bipolar child. I worry about his face puffing up from all the Lithium he takes. I worry about the side effects of the antipsychotic medicines he takes. I worry about him succeeding in school when he's too wrung out at the end of the day to pay attention because he's had to hold his emotions in check all day. I worry about whether he'll ever be able to live on his own. I worry that one of my other kids or my husband will exhibit symptoms some day. I worry about Social Services coming to our home one day because Patrick has lost it and, in a raging fit, has pushed his little brother into a brick wall.

I can find myself starting to wallow in self-pity and worry about what will happen to this kid, but then I have to focus on the good things. We are so blessed to live where we do -- we see a psychiatric nurse practitioner whose supervising MD is one of the top experts in the country on pediatric bipolar disorder, and we have a wonderful family therapist. (If they could just find a BP drug that worked on an ongoing basis. The drug merry-go-round can be maddening -- you find one combination that works, then he grows two inches or has some new hormones kick in and it throws the whole thing out of whack.)

But you're right about it being best not to feel sorry about it. Patrick's situation can be heartbreaking if I let myself think about it too much, so I try to think about the incredible gifts we've been given in this child. He's extremely bright (although he suffers from some executive function disabilities common with BP kids), has a witty sense of humor, is very generous, and has a heart of gold when he's feeling stable. He has a passion for WWII history and the space program, and can outfox any adult on his knowledge of both. He has a prodigious memory, never forgets anything he's read, and is great to have around to help with the Sunday crossword puzzle.

Anyway, I just wanted to congratulate you for having the courage to share your very personal family history on the web, and to let you know that, once you tell your story, it's amazing how many people you'll find who can relate personally to what you've been through.

Libby

Posted by: Elizabeth Fox at October 25, 2006 9:56 AM


Richard:
This is a profound posting.
Thank you for your leadership in telling us this aspect of your story with such truth and clarity.
It offers a great lesson in so many areas. All we really have is the truth of our story and when we tell it - it creates connectedness with others.
It is my ideal in being a communicator.
Your courage and straightforwardness are inspiring.
Connie

Posted by: Connie LaMotta at October 30, 2006 12:04 PM


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