What we carry

These remarks are excerpted from a speech made at the May 8, 1999, Walk for Research For Mental Illness. Some […]

These remarks are excerpted from a speech made at the May 8, 1999, Walk for Research For Mental Illness.

Some of the things we carry come from our close relationship with mental illness/brain disorders.  A lot of these things are intangibles, but they have tangible weight.

We carry the weight of the disease, of the diagnosis.  We carry like battleship anchors, the labels: mentally ill, insane, crazy, loony, psycho, psychotic.  Like a ball-and-chain, we wear words like: depression, manic, obsessive-compulsive, schizophrenic, paranoid, borderline personality, panic-disorders, nervous affliction, nervous breakdown.  We bear the well meaning but misguided advice: pick yourself up by your bootstraps; get over it; snap out of it; God never gives you any more than you can handle; you don’t have enough faith;, what’s wrong with you;  it’s God’s will.  All these are just words, just names, but we know the weight of these words.  They have their own power and substance.

We haul the stigma of the disease everyday: the beliefs that we are not to be trusted; that we are dangerous; that we are broken; that we are less than; that we have no credibility because we are “crazy.”  We with the disease have learned the heavy truth that you are NOT really paranoid if everybody REALLY does hate you. We carry the history of anger and fear that the cure has often  been worse than the disease.  We carry the weight of that histo

ry: insane asylum, mental ward, straight jacket, isolation cell, electro shock, thorazine, sterilization, lobotomy, 4-point restraint, commitment.

We carry the weight of the question “Why Me?” Moms and Dads believe it was something they did or didn’t do.  Those with the  illness believe it was something they did or didn’t do.  And we  have all sought to know why it happened to us.  As long as we  keep asking the question “why?” we subtly avoid the very painful fact that it did happen to us, and we would rather explain our  hurt than feel it.  But we also carry the gift and the possibility of mercy, love, and the chance to imagine that there are no “whys.” We can believe that we didn’t do anything wrong in  having a brain disorder, or someone in our family with a brain  disorder.   Sickness doesn’t look in your heart and say “this is  a bad person” or “this is a good person.”  It just happens.

We carry our own stories, stories filled with moments of joy and sorrow that shaped the way we have grown. Our stories speak about how it was–how every day we were held, hurt, loved, ignored, honored, abused, cared for, alone, frightened, strong, watching, listening–each day adding up to a story of our lives. It is vital and true and deeply required that we tell our story, trace the shape of it, speak of the place in our bodies where we carry it, where it still lives, weep the tears of it, allow it to be seen and known.  To have someone know the story of how we came to be here, how we came to be this way.  But we need to go past the story, to then let the story fade away, revealing our true nature.  Once our story has helped us pay attention to our own history, named it, mourned it, it is time to let it go.

In the past we have carried the sense of being alone in this struggle.  We believed there are only a few to carry the burden of changing the ancient fear and ignorance about mental illness.  But days like today are changing that sense of isolation.  It’s a weight that many cannot bear.  But it’s a weight we CAN carry, are happy to carry, even honored to carry.  It honors those few who have carried this burden before us, and it can sow courage into others’ hearts, inspire others, as we have also been inspired.  It will make a different and better world for our children. 

I’ve always admired the civil rights leaders of the ’50’s and ’60’s who stood up and changed the world.  They have become some of the greatest American heroes of the 20th century.  This struggle of ours is not unlike those civil rights battles.  A battle for equality, a war against both the terrible nature of this disease, and the equally terrible lies and myths that shroud it in mystery, shame and dread.  This is THE cause of the 21st century.  And as Rabbi Hillel once said, a saying used also in the civil rights struggles, “If not now, when? if not us, who?” And we are lucky that we carry this responsibility, this privilege, this chance, this hope.  That the world can be different.  That people’s attitudes can change.  That our “inner tyrants” can be silenced.

A simple walk on a Saturday afternoon around a beautiful lake doesn’t seem dramatic or important.  Not much of an adventure. But done with the purpose and mindfulness and celebration that we bring here today, for this cause, for these people, these could e some of the most powerful steps we ever take.

Ultimately, what we carry is each other.

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