Tag Archives: media

Life In Status Epilepticus, Or, What To Do When You Think You’re A Jellyfish

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The Jellyfish

One day she awoke in her room

And discovered she had become

A jellyfish

Her tentacles retracted

Her body shrunk

And she sunk to the ocean floor

She had neither a brain, nor a heart

And she realised she was a butterfly

Who had reverted to its cocoon

A chicken

Who had crawled back inside its egg

She had become a blueprint

Humans would try to use without success

To potentially cycle indefinitely

Between baby and maturity

Maturity and baby

But she realized regeneration

Was a pendulum between

Good death and bad death

Bad death was to lose fertility

Good death was to accept

Damaged crops and replant

But what could she do as a jellyfish?

A jellyfish had no hands to hold

No legs to chase

No lips to kiss a lover

No time to waste

What is the point of living with no love to give?

No thoughts to share?

No lungs to breathe?

One day she awoke in her room

And realised she would never die

Her tentacles retracted

Her body shrunk

She sunk to the ocean floor

And never came up for air.

‘The Jellyfish’ – Claire Fitzpatrick, 2017

1.

In 1894, railroad worker Phineas Gage changed the study of neuroscience forever. His job was to clear rocks for railway tracks, however, one day his iron rod – which he used to tamp down explosives before lighting the fuse – scraped the side of a pile of rocks, igniting a spark which set off the gunpower prematurely. The explosion sent the iron rod straight through his left eye, into his skull, through the back of his head, and back out to the ground almost thirty metres away. Miraculously, Phineas survived, yet became unreliable, partial to swearing and inappropriate remarks. Because of the sustained damage to his frontal lobe, Phineas developed Epilepsy as well as Witzelsucht, a neurological condition characterised by the impulsive and often uncontrollable desire to tell jokes, puns, and pointless stories. In 1860, at the age of 36, he died ‘in status epilepticus,’ described as a single seizure which lasts more than five minutes, or two or more seizures within a five-minute period without the person returning to cognitive normality between them. [1]

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It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness

When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.

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“We cannot talk about mental health without talking about prisons”: A Conversation with Melody Moezzi

Human rights activist, attorney, writer, Iranian American, and Muslim American feminist: Melody Moezzi is all of these. She is the award-winning author of War on Error: Real Stories of American Muslims and published her memoir Haldol and Hyacinths: A Bipolar Life last September. She also blogs for the Huffington Post, Ms., and BP Magazine and has provided commentary for CNN, NPR, and BBC, among others. Her memoir is a frank account of her journey with bipolar disorder, her times in and out of mental health care facilities, as well as her life as an Iranian-American woman in Middle America and the South. Written with grace and often hilarious, Moezzi’s book fills a gap in mental illness memoirs, in that is told from her perspective as a Muslim American feminist activist and attorney.

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Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

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Is There an Underlying Problem With How We Frame Autism? Gender, Race, and Misdiagnosis

When I was 16 years old, hands flapping rapidly against the arms of the therapy room chair, a psychologist informed me I had Asperger’s Syndrome. I had never even considered it before, I barely knew a thing about autism spectrum disorders, but once I started learning, everything quickly fell into place. But it left me wondering: why was I diagnosed so late? How did no one notice, in all the years I’d been at school, that I was autistic?

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Why Dylan Farrow’s Open Letter Should Spark Coalition-Building Amongst Survivors With Mental Illness

This week, I have been compulsively following every aspect of Dylan Farrow’s open letter in the New York Times–its fallout, reactions from Dylan’s supporters, and, at times, the blatantly histrionic defenses of Woody Allen offered by some of his friends and colleagues. Dylan’s letter–and its detractors–triggered me to the point of being physically sick. I take my nighttime antipsychotic medicine and my daily morning mood stabilizer, all for my Bipolar Disorder-2 diagnosis three years ago, but I am haunted by conversations about Dylan. People that I trusted say she is a liar and mentally disturbed. These statements triggered me, and I thought I was headed toward a mixed episode with the amount of sadness and anger I felt. Reactions such as Stephen King’s tweet that there was “Palpable bitchery” in Dylan’s letter, or that of one person on my Facebook post about the incident, “You can’t take every sob story seriously, I know plenty of crazy people who would lie and try to convince the courts that the other parent was a horrible human being just to ‘win’ custody [sic]” have made my skin crawl. And those who “don’t care” and “will continue to watch his [Allen’s] films” may do well to heed the words of Beth Richie on the silence surrounding domestic violence: “Loyalty and devotion are enormous barriers to overcome.”

I know plenty of “crazy” people, too. I look in the mirror every morning, and one stares back at me. And here is what this “crazy” person has to say.

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Ticked Off: Under Our Skin and the Gender(ed) Politics of Chronic Lyme Disease

Chronic Lyme disease is one of a rather varied group of disabling and/or debilitating health conditions that have in recent years become subjects of controversy within the medical community, as well as public and media scrutiny and skepticism—often to the consternation of people who deal with these illnesses on a daily basis. Similar to multiple chemical sensitivity (MCS), fibromyalgia, Chronic Fatigue Syndrome, and Restless Leg Syndrome, chronic Lyme has been a subject of considerable debate amongst medical doctors (see these posts on Science-Based Medicine for some interesting background material), and has also been particularly galvanizing within patients’ rights communities.

Despite the ongoing controversy, people who have been affected by chronic Lyme or some sort of post-Lyme syndrome have fought to be heard by the medical establishment, the media, and the general public. In recent years, “chronic Lyme” has been getting more attention from the media and the public, and has even come up in popular culture in recent years. In Sini Anderson’s 2013 documentary film on influential riot grrl feminist and musician Kathleen Hanna, The Punk Singer, Hanna reveals that the energy-sapping health issues that have been plaguing her since 2004 (and which caused her to stop performing in 2005) stem from chronic, late-stage Lyme disease. A feature-length documentary about Lyme disease, Under Our Skin, was released in 2009.

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