Patient Voice

Patient Voice was made possible by a grant from the Arnold P. Gold Foundation, created in collaboration with the Children’s Brain Tumor Foundation. We worked with an amazing group of young people who created images which they narrated for a video to describe their own experiences – My Diagnosis, The World of Medicine (the good and the bad) and What Keeps Me Going.

Most recently, with grants from both the Fred J. Epstein Foundation and the Arnold P. Gold Foundation, we are continuing our “Patient Voice” work, engaging people in sharing their experiences to educate those working in the world of medicine.

My father, locked in his body but soaring free

Published on Oct 19, 2014

At TEDMED, photographer Kitra Cahana shares a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that transforms into an inspiring and imaginative spiritual journey.

What motivated you to speak at TEDMED?

It’s very difficult to express the sublime and the surreal in words and photographs. I wanted to attempt to communicate all that my family had experienced in the summer of 2011 – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. When my father first had his stroke, I wrote down these words, and whispered them to him when I first came to his bedside: “We only ever needed one pair of hands, two legs, a respiratory system to keep the world afloat between us.” This became my mantra. We can sustain ourselves through each other. This is what my father taught us; he said that all who came into his room of healing should expect to be healed themselves. Healing has to be mutual.

The stroke ruptured my reality as well as his. In those initial months, so devoted to his limp body and to allowing him to communicate all that was bursting to [...] continue the story

Stag Beetle

By Ptolemy Elrington

COUNTRY: United Kingdom

DISEASE: Psoriasis

FORMAT: Mixed Media Sculpture

ARTIST’S SUMMARY

This beetle is heading somewhere. It has purpose and strength and is preparing to fly. We often feel small under the eyes of others, and with a visible and constantly uncomfortable affliction this can cause us to feel reduced to the status of an insect. But everything has a place, and therefore everybody has validity which we must strive to recognize, and must strive to apply to how we view ourselves and others. This patient’s moment of meaning centers on hope, progression and potential.

PATIENT’S PERSPECTIVE

“For over 17 years Psoriasis had become the essence of me, dominating family life. I was isolated, fearful and self-loathing, overwhelmed by long periods of hospitalization and endless clinical appointments. Although my Psoriasis is not cured, since 2005 it has become manageable. Psoriasis reminds me of its presence at the least convenient times. It no longer holds me back but propels me on to make my voice heard in improving the services available to other sufferers.”

About Perspectives

‘Perspectives – Art, Inflammation and Me’ is an initiative that brings together more than 200 artists with patients in more than 40 countries. Together, they have created a series of paintings, [...] continue the story

Wild Cards

By Fong Ku

Medium used: Silkscreen print Artist Biography Fong Ku is in her second year of a Bachelor of Fine Arts degree at the Alberta College of Art and Design. With a previous degree in international development she is drawn to printmaking’s historical role in social and political movements, its emphasis on process and the inter-disciplinary combination of drawing, painting, and in the case of plate preparation, sculpture. Creating a successful print requires the artist to constantly investigate both sides and many layers of an idea, resulting in a varied and meditative practice of intentional mark making in one direction to expose the reflection of the artist’s vision. Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning Printmaking’s capacity for producing multiples complements education and awareness initiatives. This silkscreen print, the third in an edition of three, affirms the spirit of cross-sector collaboration, and reminds us of our interconnectedness. Deb, an avid runner, introduced her health condition as the cards she was dealt. Despite severe hip joint degeneration, she insisted on being carried to her treadmill instead of the wheelchair. Card playing’s mix of fate, chance and risk has a long history. This artwork conveys [...] continue the story

Define

By Terese Mullin

Medium used: Acrylic on canvas

Artist Biography

Terese Mullin is in her second year of study at the Alberta College of Art and Design (ACAD) after having worked as an artist for ten years. She was awarded an entrance scholarship from ACAD, as well as receiving an award for earning a high GPA in her first year. Terese’s strongest artistic interest is in painting, with recent work exploring the human figure and nature, often combining and intertwining the two. She enjoys abstracting what is seen in the physical world, as well as creating non-representational work.

Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning

In speaking with Deborah, who suffers from two immune-mediated inflammatory diseases (IMIDs), I learned that one of the worst aspects of having these diseases was loss of mobility. Deborah was a runner before the diagnosis, and could not fathom losing that integral part of her life. Adamant that she was going to “define” her diseases, instead of letting the diseases define her, she forced herself out of her wheelchair and relearned how to run, adapting her stride, speed and type of run. Deborah has a strong spirit and is [...] continue the story