Friday, November 5, 2010

Andrew Solomon's Comment on Impact

Once again it is before 5AM and I'm unwillingly awake, lids heavy but legs and hands fluttering madly.

As I was unable to change the settings so that Andrew Solomon's comment on my post about him ("Productive Lives? Awards!) appears unfolded automatically, I am re-posting it on its own, with my response below.

Andrew Solomon is an award-winning journalist, novelist, and sufferer of depression, author of The Noonday Demon, An Atlas of Depression, which I remember reading over several days when I could not force myself to leave my bedroom.

Andrew Solomon said...
I am the winner of that award, so I just thought I'd reach out to you and say that I'm sorry if it's made you angry for us to receive these kudos.
 I agree with much of what you say--that most people with mental illnesses can't have productive lives, and that it's dangerous to suggest that everyone can.
 But I also know that I couldn't have had one if I'd lived 30 years ago, and that I couldn't have one now without the work of those NARSAD scientists, and I saw this as an opportunity to say to a roomful of scientists that their research is making a huge difference in actual lives, that it's not just some abstract intellectual exercise, and that those of us who have been able to get good lives out of their work are grateful. 
But I did also take it as an occasion to say how much more work is needed, and how relatively few people are helped by medication to a sufficient degree to be really productive.
 I just wanted to tell you that I hear you.
 And also to say that I did have a whole lot of unproductive years before I pulled through, and that when I get sick again, as happens every couple of years, I am right back in that place of darkness and unable to function. 
I hope you'll find some hope, but even if you don't, you're not invisible. 
Best, Andrew
Jessica Hirst / Palmer Fishman said...
Hi Andrew, Wow! What a pleasant surprise to hear from you. 
Truly, both pleasant and a surprise. I appreciate your hearing me and understanding my points. I am not angry for you and the others to receive kudos – it’s fantastic.
 As I mentioned to some of my friends, I think it’s more that I’m envious.
 I thought I was going to have a life of accomplishment, and it hasn’t turned out at all the way I expected during my first 25 years. Like you, I did very well academically, graduating Phi Beta Kappa from Stanford. I had straight A’s all the way from first grade until I started Prozac in my third year of university. 
My first job was in the Clinton White House, where I worked on international climate change policy and drafted a bilateral agreement signed by then-Vice President Al Gore and the President of Costa Rica, Jose Maria Figueres.
 I thought it was only the beginning of a great career. I started medication and therapy at age 15, and I thought it was working. 
Then around age 25 I came unwound in a series of breakdowns, half-recoveries, and new breakdowns. I reinvented myself as a hi- hop dance teacher and choreographer. That worked out for a few years, but my inconsistency and inability to function or even communicate on some mornings eventually terminated my employment. I too am grateful for medication. I am quite sure that without it I would have committed suicide already, and I am glad to be alive, despite how I feel some days. I am extremely grateful for your comments to the NARSAD scientists. 
My current psychiatrist is the best I’ve ever had, and I think so because she 
freely admits the limits of current medical knowledge. 
She acknowledges that we (she, I, and the drug companies) are still experimenting on my brain, and that it’s not easy. I appreciate intensely being heard by you. I enjoyed Noonday Demon, and your amazing ability to express yourself. 
I think society, at least US society, would benefit from understanding that 
even you still have days when you do not function well, and how much the 
world would miss out if you were 
dismissed from consideration 
because of that.
Knowing that I am not employable has been liberating in some ways. 
I have learned that I can only work with people who are willing to negotiate openly my disability, who are willing to make some accommodations in order for our joint venture to be successful. It is not easy, but it is what I have to do.
 I will keep working with what I have: my performance art, my text and images, the family foundation I serve, and my voice. 
I am more hopeful today than yesterday that it will be heard. Thank you, Jessica Hirst

Sleep!! Sleep??

During my years of depression I've had a love/hate affair with sleep.
The luxuriant joy of
into pillows and comforters after
fighting all day to stay present
The stale stench of having not just
overslept, but

having remained cowering in bed,
crumpled under the sheets for
days without
talking to another human being let alone
Getting up to use the bathroom was a major feat of
  courage, on the Lord of the Rings scale

And yet now
with abilify and prozac pumping
me up
sleep has become not only
undesirable but

I haven't slept through a night since I started to feel human again
this worries me, and my
not sleeping is a symptom of mania
not sleeping can cause mania

but my legs are jiggling
hands are rubbing together
I jump around and sing and shout just to
let off steam, as it were

Is it like the fairy-tale of the little mermaid?
not the Disney version, but the one I remember from childhood, where she
gets to be with her prince, but only by
suffering stabbing pain with every
step on her human feet?

Is this the price for wanting to be alive each day?
or is it just that the meds aren't well-adjusted

Waking up at 4 AM
incredibly sleepy in the head and chest
a vibrating live wire from the stomach
down seems like some kind of torture at Abu Graib
You know your brain craves sleep, but your
body won't calm down.
body wants to play ball.

I can't believe some people take these drugs for funsies

Thursday, November 4, 2010

"Productive Lives" Awards

NARSAD Announces Discovery to Recovery National Awards Dinner and Honors Three Extraordinary Individuals with Second Annual ‘Productive Lives’ Awards

"(GREAT NECK, N.Y. – October 12, 2010) NARSAD is proud to announce Kay Redfield Jamison, Elyn Saks and Andrew Solomon as recipients of the NARSAD 2010 Productive Lives Awards. 
They are being recognized for their lifelong struggle and tremendous success in overcoming the staggering odds those living with mental illness face to become highly accomplished and fully contributing individuals – both in their respective professional fields and in their private circles."

I don't know if I can explain how frustrated this news leaves me. I have read their books, heard their interviews, and seen them on television.  They make me incredibly distressed.
Their successes damn my failures.

 "All three demonstrate that recovery is possible." 

I know their 'recovery is possible' mantra is supposed to make me feel hopeful, maybe even inspired.
But it makes me ANGRY.  
Because these sorts of awards, setting up these very unusual people as the standard-bearers for mental illness, mean that 
all of my bosses, teachers, legal professionals, basically everyone I deal with who has some power over my well-being, 
EXPECT THAT I SHOULD BE AS TOGETHER AND 'RECOVERED' as Kay Redfield Jamison, or Elyn Saks, or Andrew Solomon.

"They are best-selling authors, disclosing their personal stories about living with mental illness. They have also played important roles in furthering research and encouraging public discourse on these often invisible illnesses."

There is NO WAY they could be suffering the sorts of symptoms I deal with on a regular basis and write books, let alone publish them, let alone keep commitments to students, to television stations, to show up and certain times and places.

Unless you are already famous, independently wealthy, hopeless, or have a uniquely valuable skill, it is not safe to disclose one's personal story publicly.

There is nothing invisible about my illness.  Just ask all my last employers, who either fired me or declined to renew my contract after I
a. failed to show up for work 
b. went into the hospital, or
c. failed to show up for a performance and failed to notify anyone

You could say I was invisible by my absences, but my illness was definitely noticeable.

"NARSAD honored J. Randolph Lewis, senior vice president of Walgreen Co., with the inaugural 2009 Productive Lives Award for his commitment to providing an inclusive workplace that integrates people of all abilities, including those with mental illness."
I hope this guy is for real. 
 The world, and those of us with mental illnesses, need more employers who can work to our strengths. 
 I have met so many people with diagnosed mental disorders who have a lot to offer the world, who want to have 'Productive Lives,' 
but who are denied the right to participate in almost any workplace.

“We are extremely proud to present our second annual Productive Lives Awards and to recognize these highly accomplished and courageous individuals who serve as role models for the countless individuals struggling to live with mental illness,” said Benita Shobe, NARSAD president and CEO.

 “They serve as inspiration not only to us at NARSAD and our donor community, but for the millions of others who suffer silently from these debilitating illnesses. Although there is much more work to be done in our quest to discover causes, develop improved treatments, and eventually prevent and cure mental illness, their stories highlight that there is hope.”
I'm sorry Benita, but these individuals drive me more to despair. I think they are comforting to mainstream America, letting employers and others continue in their expectation that everyone with a mental illness should be able to 'be productive' and act normal if they
a. get on medication, and 
b. try hard enough.

I have been on medication for almost 25 years and I can't keep any type of job that requires me to be in certain places at certain times.
I try hard every day.
I have a very good psychiatrist and have had years of therapy.
Sometimes it just doesn't work out so neatly.

'“This celebration is unique in the annals of psychiatric science as it demonstrates both the potential of breakthrough scientific research in brain and behavior, and of science in 
giving lives back to creative, productive people,” 
said Dr. Herbert Pardes, president of the NARSAD Scientific Council, president and CEO of New York-Presbyterian Hospital, and former director of the National Institute of Mental Health.'

I would love for scientific research and science to give me back all the years of lost opportunity, productivity and basic happiness I have lost.
But for right now we're not there yet.  
And I think those of us who AREN'T
 the lucky blessed 
Productive Ones
 would be better 

served by honoring 

more individuals who 
speak out about the 

reality of living with mental illness, 
or who work actively to 

create flexible, inclusive workplaces.

Kay Redfield Jamison, Ph.D., is the Dalio Family Professor in Mood Disorders and professor of psychiatry at the Johns Hopkins University School of Medicine and co-director of the Johns Hopkins Mood Disorders Center. A distinguished scholar in her field, she was co-author with NARSAD Scientific Council member Frederick K. Goodwin of the standard medical text on bipolar disorder, or manic depressive illness, which was chosen as the most outstanding book in biomedical sciences by the American Association of Publishers in 1990.
The broader public knows Dr. Jamison through her writings and public appearances as an impassioned advocate for those, like herself, who struggle to live with mental illness. Her best-known book, An Unquiet Mind, chronicles her own devastating, near-fatal experiences with manic depression. Published in 1995, it was on The New York Times best-seller list for more than five months.

Previous NARSAD honors include the 2000 Falcone Award and the Silver Ribbon Award, presented at a NARSAD Los Angeles event in 2007.
Elyn Saks is a distinguished legal scholar, Ph.D. in psychoanalytic science, best-selling author and recipient of a 2009 MacArthur Foundation “genius” award. In her book, The Center Cannot Hold: My Journey Through Madness, she relates her 30-year struggle with schizophrenia. Wrenching in its honesty and beauty, it was one of Time Magazine’s top 10 nonfiction books of the year and was on The New York Timesextended best seller list following its release in 2007.
Dr. Saks is the Orrin B. Evans Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Law School, and adjunct professor of psychiatry at the University of California, San Diego School of Medicine. She is also on the faculty of the New Center for Psychoanalysis, where she earned her Ph.D. She has written extensively on mental illness and the law in both scholarly and popular articles, and in three books.
Andrew Solomon is an award-winning novelist, journalist, critic and essayist, who has written on subjects ranging from art and travel, to psychology and Proust. Most recently and famously, he wrote The Noonday Demon: An Atlas of Depression, an exhaustively researched survey of the history and science of depression and an intensely personal recounting of his own and others’ painful encounters with depression. An instant best seller, American Library Association Notable Book of 2001 and New York Times Notable Book, The Noonday Demon won the 2001 National Book Award, the Humanitarian Award of the Society of Biological Psychiatry, and many other prizes, and has been translated into 24 languages.
Mr. Solomon was educated at Yale University, graduating magna cum laude in 1985, and at Jesus College Cambridge, where he received the top first-class degree in English, the only foreign student ever to be so honored, as well as the University writing prize. Splitting his time between New York and London, Mr. Solomon is working toward a Ph.D. at Cambridge on the relation between biological and psychosocial models of early attachment between mothers and infants. He is a lecturer in psychiatry at Weill-Cornell Medical College, and has endowed the Solomon Summer Research Fellowships at Yale University in Gay and Lesbian Studies.

Another blogger's take on the awards:

What do YOU think?

Nervous Energy

As I child I used to rub my hands together
I shook my hands so fast that the fingers
slapped together
I made strange percussion
between my palms
for years and

then I didn't
years and
a childhood quirk, i thought

but now, and 39 years of age,
i'm rubbing my hands together again!
all the time!

i recently started ingesting a new combination of
      psychotropic chemicals;
        Abilify plus prozac plus lithium and it's
allowed me to beat back the depression,
to stop seeing shiny projections of my imminent self-inflicted death
around every corner

I feel I'm in my 10-year-old body
bursting with excess energy,
with nowhere to go but out,
out through shaking hands, rubbing hands,
palms slapping together
I can't decide to call is simply a
     side effect
     or a
bizarre time-travel restoration to my pre-depression chemical balance of being

By the way, I've been having a lot of fun at my art residency in Spain.  For some of you the horrifying posts may be more compelling, but I hope we can all appreciate and celebrate the moments of respite.
The times when playing is possible!
Check it out at:

necklace assembled from finds at Les Encants flea market.
shirt gifted from Carla, Portuguese writer.

channeling Frida with wearable lung-wings