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March 02, 2005

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Palo Alto Online

Publication Date: Wednesday, March 02, 2005

Response to 'Loss of Son' column

There has been an unprecedented reader response to Weekly Editor Jay Thorwaldson’s March 2 On Deadline column, “There is more than one way to lose a son.”

Excerpts from some of the more than 100 e-mails and handwritten notes and letters, show the range of responses and stories shared -- and there has been no let-up. Names and all but generic identifiers have been removed, but will be included in future correspondence if people indicate.

Additional stories and responses are invited will be added every few days.


• “My first wife was not bipolar, but did end up getting into drugs, which, in part, ruined my first marriage and greatly affected our three kids’ lives after that (although all of us learned to cope). Life has many surprises, some pleasant and some, simply stated, not nice at all.

“I hope that it was helpful for you to write the article, but I sense that the pain will linger on forever.”

– A Palo Alto civic leader

• “My mother is mentally ill, likely bipolar (though she was diagnosed as something else), and has been on numerous occasions 'a danger to self and others.' Not just for this reason, there is something of a constant prayer in the back of my mind, 'just let them (my kids) grow up safe and well.' (Hope you remind yourself, about your son, that it wasn't for any lack of love that it happened.)”

– A mental-health case manager

• “Nothing is tougher than the loss of a loved one. (My wife) has been gone for four years, and I continue to miss her as much as I did the first day.
“Your situation is different, of course, but in some ways it must be even tougher.”

– A former city official

• “I read with interest, compassion, and empathy your article titled, ‘There is more than one way to lose a son.’ … I can be very empathic because I, too, have a wayward son who has messed up his life and his siblings by his lies and his false perceptions of his life. Though both our families live in the nice affluence of Silicon Valley, family problems can be so engulfing and so unfair. You work so hard, then you are dealt something you cannot fathom. Life is NOT fair. It makes the story line of “Million Dollar Baby” so real. You must see it if you have not already.”

• “One of my brothers has had similar struggles with drugs, alcohol, and crime, although he's not bipolar. He's doing well now, at least for the last few years (he's 44). I never gave up hope, as had all other family members. However I also simultaneously tried to ensure that I wasn't an enabler when I did try to help. I think some family members played the role of enabler for decades to his -- and their -- detriment.

“After a lifetime of doing otherwise, they finally declined any request for help, even for what I considered to be sensible pleas.

“Third, a variant on your theme, there is more than one way to lose a brother. My older brother is filled with rage at me, and I don't understand why …. It hurts, and I mourn that I've lost a brother, however not the brother that I've been preparing my entire life for losing.”

• “Only another parent can have any idea about the kind of pain you describe …. Our wonderful son … has been struggling for seven years now with a heroin addiction. It has been harrowing … and a great anguish ….”

• “I understand some of the problems of mental illness because my brother's son was diagnosed is sociopathic, and I have witnessed first-hand the pain and suffering that goes with the diagnosis.”

• “I think it means so much for people to hear that their experiences aren't singular and that they don't need to carry around a certain stigma or guilt forever just to love a relative who is sick.”

• “My condolences for the experience with your son. … I lost a cousin in a murder-suicide event some years ago. The progression of events you describe is eerily familiar.

“What seemed at first to be quirky, almost amusing behavior, in time veered further and further from the pathway of normalcy.

“Then it was so far from normal that he was beyond reach.

“When he died, I (and everyone around him) asked myself what more could I have done to rescue him. You are not alone.”

• “I rarely discuss what I'm about to share with you with anyone. … There is so much to say about the pain and anguish and desire to make things ok and fix it or not add to their daily ordeal. You want to be positive and not create more stuff that might add to the problems.

“You want to fix it and help them get better any way possible. You want the answers and you have a million questions. As you depicted those with any experience with family mental illness are more often familiar with it staying behind closed doors or not discussed often.

“There is a stigma of sorts unlike any other disease that I know of and a pain threshold that does not have a normal gauge before (one is) almost destroyed by this loved one. Any age has not been protected from this painful experience. Having not heard if your son had offspring of his own that live with his legacy was unclear. It is a haunting reality no doubt that it came on later in your son's life. For you, the memories of the good times cannot bring solace now but maybe someday you'll get there. He remembers too.....

“The point I feel like sharing with you is my own mother committed suicide over 30 years ago and to this day, she remains a part of my almost daily thoughts. Randomly things will trigger a thought of her.

… “As a mother of an almost 4 year old, I reflect now on who I am as a mother and how her relationship with me as a child taught me lessons on being this woman I am today in spite of her illness, eight suicide attempts, drugs she was taking constantly, etc. The crazy part is WE LOOKED NORMAL! We hid it from everyone around us and until the bitter end you would not believe the way things appeared from the outside.

“And years later, it finally was safe to bring out in the open and talk about it and think about it and deal with it. …

“I look at how this is the way it is and maybe in another lifetime the medical world can find the panacea and help people with chemical imbalances more effectively and allow more peaceful existences. To say the least, it is not easier to be the one living with this disease day in and day out and out of control constantly and unable to get out of their own way.”

– A former colleague

• “I was deeply moved by your column in today's Weekly. I have bipolar illness and I am a recovering alcoholic. I've been writing short biographical stories that I hope to publish someday. I also hope to do some kind of work where I can become a social advocate to improve education and health care for people who suffer from addiction illness and mental illness.

“I'm by no means ready to go public with my story, but some day I will. My struggles and suffering have been hidden and internal. I'm lucky to have a healthy family, a beautiful home in Palo Alto and a distinguished career. But sometimes all that made it harder to get well and sometimes impacts staying well.

“… Maybe together we can up with some ideas about how we can make our community and world more able to meet the needs of your son and all those poor souls suffering in jail who need medical care and addiction treatment instead of punishment.

“With heartfelt thanks for opening the door for me to speak up.”

• “There but for the grace….”

• “My brother's story is so close to that of your son. At 28 he's in prison in Texas for the third time, to be released this time in July. Bipolar. Using. Disappearing. All of it. Also he has a child. So painful.

“I watch my own 20-month-old son and wonder how I could withstand it if he suffered the same .…

“I yearn for the day when this disease/these behaviors are better understood. When our hope can rest on something more solid.”

• “At times, the work I do can be more exhausting than you might -- er, check that; YOU do know!

“Your piece came to me at a time when I was emotionally spent. Words cannot express how your story helped me to regain much fervor, and to remember why I continue to do the work I do ....”

– A public defender

• “We need to be able to tell the truth about the painful realities of our life. Mental illness is not only an individual condition, it is part of a community system. There may even be a contribution to brain dysfunction from toxins in the environment, such as mercury.

“We have such shame about our imperfections, mental illness, abortions, addictions, clutter, academic struggles, financial problems. People try to keep these things secret from one another and we end up isolated and not able to learn from one another or benefit from one another's love and experience. We also then can't organize to find solutions that would address the underlying causes or meet communal needs.”

• “As soon as I saw the headline I knew I had to read the article. My son will be 40 this month and wasn't diagnosed as bipolar until age 33. Your pain and mine are experienced by so many who are afraid to talk about it.

“… A cousin of mine who is bipolar once said to me, "Remember that no matter how hard it is for you at times, it is harder for him.”

– A Menlo Park resident

• “… We too have a son who was originally diagnosed bipolar, but is now believed to have schizo-affective disorder -- which lies somewhere between BP and schizophrenia, with symptoms of both.

“So much in your article rings true for all families that it would take volumes for me to respond. I plan to do some of that in a letter to the editor. … Thank you for an article that strikes a tremendous blow against stigmatizing people with mental illness. It is disgraceful that in our society, that because of stigma it is easier to admit to being an alcoholic than to admit one might have a biological illness in their brain. With your help
that can and WILL change.”

– A Palo Alto resident active in the National Association for Mental Illness

• “Oh Lord, what a story. I've now read it three times, wondering what the hell to say to you. It is just so tragic, screwy and almost unreal.”

• “None of us can be sure when our children are born that they will be as perfect as we see them at that first instance. As they grow we have less and less control over them.

“… This bipolar disorder is not new to me. There are two other young adults in Menlo Park that we know well whose families are going through similar experiences. I also have a cousin with a daughter who was diagnosed as a teenager. In each of these, the families have dealt with the disease in their own ways.

“The hardest thing they have each had to do is to let go. As a defense mechanism I know you cannot keep going to his rescue only to be disappointed when he breaks down again. He has to make choices himself. It is not up to you to protect him forever.”

• “I am a son who was out on the fringe and made it back with so much to be grateful for. I can’t tell you how moved I am by your piece, except to say that it has renewed my belief that I must do something for another, make a difference or at least try to help someone.”

• “My wife and I as well as others at work were immensely moved by your article. As parents of occasionally scary teenagers we sympathize with your saga.”

• “Your column today … left me in tears. … I'm sure other parents in the same situation have felt as desolate as you, and will find your eloquent words of great comfort. I am sending your column to my brother's wife in … Maryland, who inherited a bipolar stepson when she married my brother (now deceased) many years ago.

“She still finds it too painful to discuss with the rest of the family, except for assuring us that [he] is living in a group home and managing. [His] brother and sister, whom I am close to, grieve. They will be comforted by your words ….”

• “You did a real service in opening up and setting forth such a difficult situation. You will have comforted many people. … Those folks and others will be comforted by your words on not blaming themselves, and seeing that such tragedies can happen in many families. … You might want to read the New York Times Magazine article from a couple weeks ago in which a dad described his experience with his son's drug addiction. I read it to my kids.”

– A local school board member

• “Life can be so unfair.… Your beautifully written story will affect everyone who reads it. There is much there to think about. Our health care system is not set up to catch and treat medical conditions as ‘a bipolar condition,’ ADD, Schizophrenia or even manic-depressive personalities.

‘I have another friend who has such a similar story with his son. I know your story will move him to tears. In the seven years I have known him, he has constantly struggled with his son. The end point is not pleasant for him either.”

– A Palo Alto neighborhood leader

• “I, too, have a bipolar child. She went through many hospitalizations, many terrible times, but has been taking her medicine faithfully now for several years and seems to be doing wonderfully well as a wife and mother. I am so grateful for that, and so sorry that your son's life is not working in that way. Thank you for saying how terribly sad, how dreadfully hard, it is to try to help a child with bipolar. Most people don't have any idea.”

– A Palo Altan involved in civic affairs

• “… I understand -- from a fraternal rather than paternal -- standpoint. Wow.”

– A Palo Altan with a schizophrenic brother who is out on the streets

• “… It is ironic that Josh spent evenings with his grandmother who was dying of breast cancer and the effects. My nieces spent much time as 6, 7, 8 year olds visiting their grandmother, who couldn't eat due to the effects of chemo during her last years, dying of breast cancer.

“Both nieces became anorexic, later bulimic, into eventually alcohol and drugs. The oldest survived, the younger died from a drug overdose …. The oldest niece was hospitalized at Children's Hospital at age 10 with anorexia. That was almost unheard of then.

“The charm, the flair, the intelligence of these young people almost seem to camouflage the early stages of these elusive illnesses.”

• “We lost our son, inch by inch, eight years ago to cancer. He was 36."

• “It's been about twenty minutes since I read your piece in today's Weekly …. I was stunned into silence ….

“When my late mother was institutionalized for mental illness in the 1960s in New York my dad told us (my sister and brother) to tell people she was away visiting family. Years later, when we moved to Palo Alto (in part, to escape the stigma and start over) she was not able to tell any of her employers about her struggle with the chemistry in her brain.

“When my dad left the scene a few years later my mom was unable to hold onto a job, which resulted in both my sister and me dropping out of high school. (I finally finished Paly the following year, my sister never went back, and ended up with a GED, a brilliant person who has worked in low paid clerical jobs her entire life).

“‘Griefs, at the moment when they change into ideas, lose some of their power to injure our heart,’ wrote Proust, in a line that I carry around in my heart.

“We have a long way to go to fully remove the stigma of mental illness and to make more available the effective long-term support the removal of that stigma will make possible.

“Your latest column gives us a potent new weapon. I am deeply grateful, as I know my mom would have been.”

– A member of a school board in the Midpeninsula area

• “Profound thanks …. Those of us who suffer from bipolar disease know it as a virtual brain cancer -- sometimes in remission but seldom gone for good.
“And we must forever ask ourselves the question, ‘Where do I leave off, and where does the disease begin?’”


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