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Two Malaysians defy limits to leave a legacy of creativity and courage

Live Your Dream painting by Janet Lee

Janet Lee (1989–2023), born in Kuala Lumpur, Malaysia, was an internationally recognized colorist celebrated for her vibrant palette and free-flowing, expressive strokes. Despite living with intractable epilepsy and receiving a diagnosis of intellectual disability at age 16, Janet overcame these challenges to produce artwork that reflected joy, harmony, and a profound love for life.

She was a dedicated contributor to the Hidden Truths Project’s 1:26 The Art of Epilepsy with ongoing support from her family. We are deeply honored to see her legacy continue through the establishment of the Janet Lee Gallery in Kuala Lumpur and an upcoming documentary, which will also feature the Hidden Truths Project.

Janet is featured in The Star article, “Two Malaysians Defy Limits to Leave a Legacy of Creativity and Courage.” Click here to read.

The lived experience of the burden of normality: Explored through the lens of art therapy

Abstract

Within the clinical and research spheres, there is increasing recognition of the importance of understanding the lived experience of ongoing illness and incorporating this voice into research and clinical practice. The current paper provides insights into the lived experience of undergoing epilepsy surgery, explored through the lens of art therapy. Six pieces of self-portraiture are presented that highlight key features of the burden of normality as experienced by joint first author Sarah Brown (SB) after her epilepsy surgery. Self-reflections from SB about her artwork are integrated with findings from the empirical literature that detail experiences of post-operative adjustment, providing novel insights into the post-operative adjustment process from the lived experience perspective. This approach highlights ways in which key findings from the research literature, which summates experiences at the group level, can be applied to the individual situation. The study also underscores the potential value of art therapy as a complementary therapy for holistic post-operative rehabilitation practices.

Epilepsy Explained from an Individuals Perceptive

Welcome!

“This is a website about understanding epilepsy.

I created it because I believe there’s a need for plain-spoken, practical information about this affliction, especially for the families and friends of people who have epilepsy.”

Jane Deal

https://www.instagram.com/janedealcateringandart/

Please note: The information provided is for educational purposes only and is not intended as medical advice.

COMMUNITY IN MOTION

COM·​MO·​TION: FROM THE LATIN, “COM”, MEANING ALL TOGETHER & “MOTIO” MEANING MOVEMENT

ComMotion – Community in Motion builds community and improves well being through adaptive and inclusive movement.  

We provide people of all walks of life the opportunity to engage in fun activities that will stimulate the mind, body and soul.  Our unique multi-sensory programs have reached, inspired, and moved more than 35,000 people from around the world.

Meditation Changes Your Brain. Here’s How.

Meditation Changes Your Brain. Here’s How.

It’s Mental Health Awareness Month. If you’re one of the 32 percent of US adults who experienced symptoms of anxiety or depression last year, your doctor or mental health care provider may have recommended you learn meditation to help manage your stress. But how exactly does this age-old practice change the brain? Neuroscientist Richard Davidson, PhD ’76, the William James and Vilas Professor of Psychology and Psychiatry at the University of Wisconsin–Madison, discusses his decades of research on meditation—enabled in part by a collaboration with the Dalai Lama—and dispels myths about how it works and when, where, and how it can be done.

Disability Inclusive Language Guidelines

Disability Inclusive Language Guidelines

These guidelines have been prepared by the United Nations Office at Geneva as part of efforts to implement the United Nations Disability Inclusion Strategy, launched in 2019. The Strategy is a key framework for policy and action to mainstream disability inclusion at the United Nations. It is aimed at removing barriers and engaging persons with disabilities in all spheres of work and life in order to achieve sustainable and transformative progress on disability inclusion.

Its indicator 15 on communication, in particular, requires that internal and external communications should be respectful of persons with disabilities. This document contains recommendations that United Nations staff, experts and collaborators can use in their oral and written communications on disability or other subjects, including speeches and presentations, press releases, social media posts , internal communications and other formal and informal documents. It is based on an in-depth study of disability-inclusive language materials and a consultation process with a diverse range of experts, including persons with disabilities.

Sacred Lives: The Social Impact Of Epilepsy

Sacred lives: An Account of the history, cultural associations and social impact of epilepsy.

Sacred Lives tells the history of epilepsy from ancient times, when the condition was felt to be sacred, to the present day. The initial chapters deal with the early myths and mystique that surrounded it and led to persecution, demonization, incarceration and social rejection. It is only by the nineteenth century that epilepsy becomes accepted by physicians as a physical condition and not a manifestation of madness or the result of a dangerous contagion. The first pioneers of scientific advancement, along with their contributions, are described along with the often serendipitous discovery of effective drug and surgical treatments.

The Advent Of Epilepsy Directed Neurosurgery

The Advent Of Epilepsy Directed Neurosurgery The Early Pioneers And Who Was First

Efforts to treat epileptic seizures likely date back to primitive, manmade skull openings or trephinations at the site of previous scalp or skull injuries. The purpose may have been the release of “evil spirits,” removal of “cerebral excitement,” and “restoral of bodily and intellectual functions.” With progressive discoveries in brain function over the past 100 to 300 years, the cerebral cortical locations enabling voluntary movements, sensation, and speech have been well delineated. The locations of these functions have become surgical targets for the amelioration of disease processes. Disease entities in particular cerebral-cortical areas may predispose to the onset of focal and or generalized seizures, which secondarily interfere with normal cortical functioning. Modern neuroimaging and electroencephalography usually delineate the location of seizures and often the type of structural pathology. If noneloquent brain regions are involved, open surgical biopsy or removal of only abnormal tissue may be undertaken successfully. A number of the early neurosurgical pioneers in the development of epilepsy surgery are credited and discussed in this article.

Universal Auras, a Personal Experience by Ingrid Pfau

Universal Auras by Ingrid Pfau

My name is Ingrid Pfau, and I am not afraid to share that I have active epilepsy. After all, I am a filmmaker who works with people with disabilities in Birmingham, AL at the National Center on Health Physical Activity and Disability (NCHPAD). My journey toward understanding that I had drug-resistant epilepsy happened at the University of Alabama, Birmingham (UAB), where after 10 years of unsuccessful drug treatments, I had stereoEEG (SEEG). Accepting that my hair would vanish, 14 electrodes were drilled into the temporal region of my skull and brain and left there for 10 days. During this time, I could not walk out of my hospital room and had multiple tonic-clonic seizures. My comprehensive epilepsy care team found where my seizures were coming from—the whole point of an SEEG. Unlike most people, I asked to have everything that was used during the procedure given to me as a gift when I left UAB.