Category Archives: Health & Medicine

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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Nervous Systems: Part 2

Here is the second installment of my theoretical/graphic memoir on disability, visibility, and gender! Previously: Part 1

Image descriptions can be found below the .jpgs; click the images for larger versions. Should you need more background on the “Supercrip” trope, a piece that I wrote for Bitch on the topic (all the way back in 2009) is cited on page 7.

NS-page7

 

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Six Things I’ve Learned From Dealing With Chronic Pain

Six Things I’ve Learned From Dealing With Chronic Pain

As I have written about in many locations around the web (including this site), I have chronic pain and fatigue caused by a condition called fibromyalgia. I started experiencing symptoms at 20, was diagnosed at 21, and in the eight years since my diagnosis have learned some things that may or may not prove useful to both other people with chronic pain and/or health conditions, and “healthy” people as well. The following is less about what having this condition is like on a daily basis (please see my xoJane article linked above for more on those aspects), and more about (insert triumphant violin swells here) WHAT I’VE LEARNED from having a debilitating illness that I will have for the rest of my life:

Sometimes a “positive attitude” is not the best course–try to aim for a realistic attitude instead. I know that maintaining a “positive attitude” is all the rage these days, but for some people it is simply not a great choice. There is no faster way to make yourself feel bad about having “negative” thoughts/energy/whatever than to try to actively banish these thoughts by trying to “think positively” instead of, y’know, dealing with those negative feelings. Bad feelings are a part of life, and they need to be dealt with so you don’t end up making yourself feel worse by trying to wish them away. This is why I try to cultivate a realistic attitude–I have both good days and bad days when it comes to pain and fatigue, and I can acknowledge and work with that instead of stuffing any negative feelings down under the guise of being POSITIVE all of the time.

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Waiting

Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.

I am grinding my teeth.

I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.

I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.

I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.

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Drawing Out Whiteness and Disability: Introductory remarks and part 1

Accessibility note: The image descriptions for this series, since they are very long, can be found under the image .jpgs in each installment, rather than in the alt-text field. 

Introductory remarks: I completed the following multi-part, miniature graphic work on whiteness, white privilege and physical (dis)ability in 2010 as part of a final assignment for an anthropology class on the construction of race and ethnicity–and, old as it is, I’ve decided to share the entire work on Disability Intersections for what I hope are fairly obvious reasons. I’m not a professional artist by any stretch of the imagination, but I believe very strongly in both the accessibility of graphic work as a tool for anti-oppression work, and how graphic work can allow certain things to be conveyed that cannot always be conveyed in writing–particularly academic writing.

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Misunderstanding the Mind/Body Connection

Many people with chronic health conditions, chronic pain, and/or mental health conditions are well aware that the mind can influence how the body feels on both acute and more long-term levels. A Google search for “chronic pain and depression” brings up around 42 million results; it’s not surprising that mental health concerns are a problem when it comes to chronic physical health problems, whether mental health issues precede chronic illness or spring up long after a person has been dealing with chronic pain and illness. In many cases, mental health issues and chronic illness/pain affect each other, but for those who have both, it’s not so much a chicken-or-egg problem of “which came first?” rather than trying to deal with and manage each issue on an ongoing basis.

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Brain Drain: Chronic Pain as a Disability

Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.

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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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