July 27, 2015 Loading Docs

Frail, in Pain, and Craving Dignity

Filmmakers hope Gina’s story of battle with mystery defect will open people’s minds to voluntary euthanasia.
Filmmaker Jeremy Macey said learning Gina's story had been a humbling experience.
Filmmaker Jeremy Macey said learning Gina’s story had been a humbling experience.

Gina can’t see, is bedbound and has to avoid light and sound as they are painful to her eyes and ears.

She has to eat quietly, avoiding noisy foods such as potato chips or apples, eating only pureed food. Gina is pro-euthanasia. 

She did not want to share her last name for fear of repercussions but we can say she is in her 50s and lives in darkness with the walls of her room in a Wellington rest home dotted with notes reminding people of what she can and can’t tolerate. Her muscles have wasted away, causing painful pressure areas from head to toe, and although she can roll her frail body over by herself, it’s a struggle.

There is no name for Gina’s condition, but it’s suspected it is hereditary as her brother and sister have it, although not as severely.

Gina’s name is the title of one of the 10 three-minute documentaries produced by Loading Docs, an annual initiative promoting filmmaking talent, launched by production company Notable Pictures, and funded by the New Zealand Film Commission and NZ On Air.

This year’s theme was “connection”.

Gina was created by Wellington filmmakers Wendell Cooke and Jeremy Macey and focuses on voluntary euthanasia, which was brought to the Government’s attention this year by lawyer Lecretia Seales, who failed in her High Court bid to allow her doctor to help her die without criminal prosecution.

The pair planned to use interviews from euthanasia advocacy organisation Exit International when inquiries led them to Gina. Macey said learning Gina’s story had been a humbling experience.

“When I realised the enormity of what she’s living with, it just made me even more respectful and awed by what she puts up with and just so grateful to walk outside under my own steam into the daylight, look around and hear the sounds and all that’s not available to her … it’s only when I visited her and felt the reality of being in her room that it struck home and that’s something that I’ll never ever forget as long as I live.”

He hoped Gina’s story would open people’s minds about voluntary euthanasia.

Gina’s sister, Roslyn, portrays her sister in the movie.

Gina, who has had the condition for 10 years and been severely disabled since 2006, said “it would be a dream come true to finally be released from this”.

“It would give me great peace of mind knowing I have a choice. I can decide when the time is right for me to end my suffering in a dignified way.”

She missed her independence and privacy, but also her life. “[This] is an existence, not a life,” Gina said.

Roslyn said there was still no name for the condition that plagues them, but it continued to worsen.

“We’re not aware of anyone in New Zealand [with the same condition], but through the internet have found someone overseas with the same symptoms,” Roslyn said, adding that specialists believed it was some kind of genetic collagen defect.

“It’s a connective tissue disorder, the body doesn’t regenerate successfully or recover. Gina is physically frail but mentally strong.”

A GP visits Gina regularly but can only look after general wellbeing as there is no effective treatment.

Roslyn is wheelchair-bound and cannot talk so the sisters communicate via a touch alphabet method through a friend – a slow process.

To watch the documentaries visit: loadingdocs.net

About Gina

•Light and sound cause pain
•Condition has not been diagnosed
•Aged in her 50s and already in a rest home
•Is pro-euthanasia
•Her life is the subject of a new documentary

via The NZ Herald