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by Toby Serrouya
Paralegal, Mother, Donor – Brain & Behavior Research Foundation 

Alan at high school graduation with mom (right) and grandmother (left)

My son was first diagnosed with a debilitating form of bipolar disorder when he was 19. His diagnosis was changed eight years later to schizophrenia and he died at the age of 27 and a half.

Alan began to exhibit signs of obsessive behavior in junior high school. In high school, though he was in all honors classes in a very advanced private school, had trouble completing his assignments on time and being ready to go anywhere on time. The car pool was always waiting for him!

But it was when he was a sophomore at Yeshiva University that things took a dark turn. Alan began to sleep all day, not go to classes, and he even stopped eating. We received calls from his friends in the dorm telling us that something was very wrong with him. We took him out of school for a long Thanksgiving recess break and had an evaluation done by the Chief of Psychiatry at St. Barnabas Hospital in Livingston, NJ. It was there Alan was diagnosed with bipolar disorder.  The doctor advised us to take Alan out of school with a leave of absence, and have him begin therapy immediately. I didn’t realize it at the time, but there were no medications that existed that could help him in the long-term. There is still much work to be done in terms of research breakthroughs and medications. It was only after Alan’s death that I learned how low a priority fund-raising is for mental illness – it is the “step child” of all fund-raising endeavors, even at the Congressional level.

So I decided to organize my own annual fundraiser, A Walk for a Cure, back in May 2001, and looked around for an organization to donate funds to. A good friend of mine, Janet Reckenbeil,  gave me a NY Times clipping of a wonderful article that talked about the Brain & Behavior Research Foundation (then called NARSAD), and the rest is history.

The psychiatrist wanted to put Alan on medication ─ Alan fought it for a long while, but finally agreed. We quickly learned that until the right combination was found, each medication could exacerbate the symptoms it was meant to alleviate. We finally found an effective combination with lithium as the catalyst.

Alan, celebrating college graduation with mom and friends

Lithium enabled Alan to return to college, read and focus again, and ultimately graduate, going on to get a great job. Unfortunately, this medication began to attack his kidneys and he had to be taken off of it. His doctor was never able to find an adequate substitute.

Because people often mask the signs of mental illness, some of my friends thought Alan was faking it and that I was spoiling him, and even refused to accept his diagnosis. It wasn’t until Alan died that those around him accepted the truth.

One devastating night in 2000, the police department called and gave us the news every parent dreads: that our son had been in a terrible accident, and to come to the police department as soon as possible. On the ride to the police department, I kept asking why we weren’t going to the hospital, but I soon learned why. My beautiful private school-educated son had jumped to his death from the roof of his apartment building. He was just 27 and a half years old.

Once I returned to work after a period of mourning, my colleagues greeted me and told me that they were going to help me heal ─ and they did! Part of my healing process after Alan died was to take their suggestion to write a book. The solitary, healing exercise brought back happy memories of raising Alan, which had been eclipsed by all the years of his illness. I wrote the dedication “in loving memory to my son Alan who always wanted to do the right thing and have all of those whom he knew and loved do the right thing as well.”

People still view mental illness as something that only the homeless or criminals have. The only way to change this is to share stories of people like my son, and to let others know that mental illness can strike anyone – your mother, your sister, your best friend, your son. That’s why I want to keep fighting and tell others to keep fighting mental illness, and keep raising money for the wonderful research that is funded by NARSAD Grants.

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By Dolores Emory
Donor, Brain & Behavior Research Foundation 

Me (Dolores) and my son Todd

This is a true story about what happened to a family when mental illness struck one of its children.

My son Todd Christopher O’Connell was born April 18, 1965. It was an Easter Sunday. Everyone said “Todd is going to be special because he was born on Easter Sunday.” And special he was. He was gifted and talented. He was an honor student and showed such promising potential in art, poetry and early language skills. He was reading at three years old. Everyone was amazed at his precociousness.

Unfortunately, a few weeks after his 18th birthday, Todd became mentally ill. For the next 26 years he was in and out of mental institutions and treatment programs. He was a complicated mixture of schizophrenia and bipolar, with severe paranoia. Todd took lots of medicines, but nothing ever seemed to work. Todd often referred to himself as a tortured soul.

Now his suffering is over. He made a deliberate choice not to go on. Todd is at peace.

I will miss my son every day, as will his brother Brett. He was our soldier. He marched proudly with a debilitating disease until he could march no more.

None of us have surfaced “the same.” There has been growth and enlightenment, along with regression and submission. There have been so many conflicts of emotion amongst us that it is difficult to name them all.

I tell our story, however, because every day other people are beginning their journey. My heart aches for them and my prayers are with them. I want these mothers and fathers to know that they are not alone. There are others that share their pain, and understand their anger.

I believe the answer is in science. The Brain & Behavior Research Foundation makes it possible for scientific research to be done and for new treatments to be created, so that people like my son Todd will not have to suffer the despair and anguish of mental illness.

I want people to know in the depths of despair and hopelessness, a strength and life can reinvent itself. You can ride it out. Is that advice? I wouldn’t dare. I took the hard road, the long road, and I only want to say when you feel that you can’t go on, you can, because you will. And then you won’t be “you,” you will become a different “you,” a new “you.” And then you will join a different world, the world of “seeing, caring, and knowing,” not a world you would have chosen, but a world that has chosen you. Through this you’ll find an inner strength and wisdom that can only come from having been there.

My Todd

I’m So Proud of my Todd
by Dolores Emory

I’m so proud of my Todd
He is a winner with a loser disease
He recognizes and works hard with doctors
On regulating his meds.

Everyone at the board and care love him.
He’s generous, kind, thoughtful and happy.

He helps others.
He has not lost his memory and he cares about the young people that come and go from the
board and care. He knows everyone’s medicines and diagnosis, including his own.
He has found the strength to give up the street drugs.
It was hard.
I ought to know.

Now when we go to lunch on Saturdays we enjoy each other,
we talk rationally
we talk lovingly about the past.

It’s amazing how the right doctor and the right board and care can take away a lot of the worry and pain.

I’m so proud of my Todd.
Each day he faces the day with new hope,
new promise.
He follows the cures with interest.

He is at peace at Casa with Barbara.
And that gives me peace.
It has been a long journey and there are still times that I resent it.
If Todd feels that way he never mentions it,
I’m so very proud of him.

At this point I might ask God for the things to make his life complete.

                        The first is that his father would visit and embrace him.

            The other is that the Rolling Stones would stop by.

After all I’ve purchased their tapes over and over and over.
I believe I have purchased Beggars’ Banquet 100 times alone.
In the days when Todd kept giving them away, and trading them.

Those days are over. And I’m so very, very proud of my son.

Todd

By Dianne Ackerman, Associate Director of Communications and Public Relations, Brain & Behavior Research Foundation

The recent suicide of professional hockey player Wade Belak is the latest in a string of sports tragedies—his death follows those of New York Rangers forward Derek Boogaard and Winnipeg Jets forward Rick Rypien. There have been many others over the years. Just last February, NFL Football player Dave Duerson of the Chicago Bears committed suicide. Duerson believed the answers would be found through research, and he decided to donate his brain to science before he died. It was found that he suffered from successive traumatic brain injuries that may have contributed to his deteriorating psychiatric state. Research has shown us that mental illness is often a combination of environment and genetic predisposition. Boston University’s recent study on retired athletes found that those who had had three or more concussions had a three-fold higher incidence of depression compared to players with fewer brain injuries. While these studies find so much in the physical, there is an important aspect that few are willing to expose: the devastating social stigma that comes with mental illness. This can be even crueler for men in our society than for women. We’ve created an environment where we idolize athletes, as well as men in general some argue, for being tough, resilient and infallible. Enforcing these stereotypes leaves no room for vulnerability, disclosure, or to do anything other than “tough it out.” Would any of these athletes be alive today had they disclosed their mental illness to an accepting society and received better treatment? An astounding 1 in 4 Americans—that equals 77 MILLION Americans—suffer a mental illness. There is no escaping the fact that this statistic reveals we are all personally affected in some way by mental illness. We have triumphed in overcoming what seemed in recent decades to be irreversible stigmas like cancer, HIV, and sexual orientation. It is time to overcome the stigma of mental illness. It is time to create change in our own circles and exchanges, and elevate this topic into the fore of our societal dialogue. We can celebrate the fact that breakthroughs are being made every day through research, and that science continues to illuminate the profound mysteries of the brain. Let’s join in our power to break the silence so that no one must suffer alone. Lives can and will be improved, and it all begins with our willingness to talk—and act.

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