August 16, 2010

Emily Dickinson: Poet, Recluse, Epileptic**?

Photograph by Jack Illingworth.
"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Emily Dickinson's words have inspired generations. In particular, the poem above seems to have struck a chord within the special needs community--perhaps because Emily Dickinson is one of us?

Known for her reclusiveness as much as her creativity, it was long thought that Ms. Dickinson suffered from mental illness. New research revealed in her biography Lives Like Loaded Guns: Emily Dickinson and Her Family's Feuds indicates that her condition was more neurologic than psychiatric. According to author Lyndall Gordon, the drugs prescribed to Ms. Dickinson were ones used at the time for epilepsy.

With the diagnosis of epilepsy, many strange aspects of Emily Dickinson's life tumble into coherence. Her reclusiveness transforms into the common fear of having a seizure in public. Her unmarried state is due to the stigma associated with seizures--in many states "epileptics" were forbidden by law to marry. Her white wardrobe and adherence to routine? An attempt to reduce overstimulation and resulting seizures. Even her creativity? Temporal lobe epilepsy has long been associated with creative genius.

This book doesn't focus solely on the poet's epilepsy; it includes the many familial struggles she faced. But, given the hurdles which individuals with epilepsy still face today, the beauty that Emily Dickinson managed find and create is made even more astounding.

Thanks to Lyndall Gordon's investigation, Emily Dickinson, who has long inspired us with her words, now inspires us with her life.

**Disclaimer: I am using the word "epileptic" here for historical accuracy and grammatical consistency. The term "epileptic" is no longer used, as individuals suffering from epilepsy are not defined by their condition. After all, no one refers to someone suffering from cancer as a cancerian, right? That said, as I've witnessed some spectacular showdowns over the use of the E-word, please don't crucify me!


  1. Hi Cristina,
    This has been one of my favorite poems since way before I had little John. In fact, when I opened your blog and saw the name of Emily Dickinson and the picture of the bird I immediately thought of the poem before reading your post! Thanks for the insights!

  2. I love when I hear about people with "disabilities" who went on to do incredible things. People that are deaf, blind, autistic, have CP...and yes, epilepsy. Very inspiring indeed!

  3. Heh, sugar magnolia used the word 'autistic'. Word battles still going on in that community but you will not find me entering the fray except to say that whatever word is rejected, another one must be chosen. Expect the chosen word to be rejected eventually, too. Like I did here:

    Your post is beautiful, Cristina. Just think that the word police need to pay attention to the context of how the words are used. Barbara

  4. Unfortunately, the word police strike online all the time regardless of context. The episode that scarred me, however, took place in person at an epilepsy conference last November. At the end of my row, a young man and his wife asked a question of a panel. The young man said he was just diagnosed as an "epileptic". (I believe he received a head trauma in the war.) One of the panel members dressed him down for using the E-word in front of the entire auditorium! The poor guy turned bright red and I think neither he nor his wife asked another question the entire conference. I felt heartsick for them. Here they were just learning the ins and outs of a new debilitating condition to be publicly humiliated for not knowing the current trendy word for it. Someone could've taken them aside at the end of the session to say something instead, but that's not how it happened. :( Context is key. I wish more people were sensitive to it.

  5. That is a horror story, Cristina. (I bet I could think of a diagnosis for that panel member.) He not only silenced the man and his wife but others in the audience, too. (I've seen classroom teachers use that technique. Gah.) Disclaimer necessary language. Gah.

  6. Thinking back, you're right Barbara! I didn't raise my hand after that either. :( I was really afraid I'd accidentally say something wrong too. I am sure I wasn't the only epilepsy-newbie who was made worried and self-concious when instead we should've all been learning and supporting each other.

  7. Cristina and Matt,
    I came across your website after really enjoying this:

    I am in tears. Dickinson's poem and Bertrand's sweet smile and beautiful energy just melted my heart. Thank you for sharing your story and for tirelessly seeking support for research around difficult genetic disorders. Bless you in all you do.

    I also wanted to share with you a quote that touched my heart as I've been struggling to understand the meaning behind suffering. Here is my blog post about it:

    "Human beings are created from the dust of the earth; but do they resemble dust? Grapes come from vines; but do grapes look like vines? Does theft have the same shape as gallows? Does piety resemble eternal life? Nothing resembles its consequences. So the root of pain and torment is not evil." - Rumi

    Love to you and countless prayers. Enjoy every breath and moment with your son, he is truly a gift of beauty to this world =)

  8. My family has a history of epilepsy in it. Currently, my pregnant sister, but also my deceased grandmother who suffered the destructive "treatments" of the 1940's "hospitals." We really have come a long way in our understanding of what the disease is. I just wish they would figure out how to CURE it...

  9. Saw your websight and thought i would give perspective. I have bipolar and take lamitcal which is also used for epilepsy treatment. I am also a decendent of emily dickenson. There is some genetic history there. Bipolar has a nero componet so it could go either way. Thank you for yoir article. God bless

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