Rotorua woman Kirsty Gerlach talks to a documentary film-maker about living with motor neuron disease. Photo / Stephen Parker
Rotorua woman Kirsty Gerlach talks to a documentary film-maker about living with motor neuron disease. Photo / Stephen Parker
Rotorua woman Kirsty Gerlach has been described as a "medical miracle".
Two years on from her diagnosis with the most aggressive form of motor neurone disease - bulbar palsy, she is still alive and her attitude is something to be admired.
Gerlach is a well-known and loved Rotorua figure. Fromher involvement in her church to owning a successful audiology clinic Kirsty Gerlach Hearing for many years.
Now her journey has been made into a short documentary film, which Gerlach wants to share with every person who has touched her life in the Rotorua community.
Things for Gerlach had taken a turn since the Rotorua Daily Post last spoke to her.
Fortunately, movement in one finger allows her to type and "clever gadgets" have kept her talking, she says.
Looking back at the past year, she says a highlight has been attending her son's university graduation and having her whole family around her for her 60th birthday.
Highlights are not without lowlights though and she says something she misses greatly is the "beautiful forest walks" Rotorua offers.
When asked what gets her through, she says to do this journey without faith would be truly "depressing and hopeless" and she finds comfort through her religion.
Fourth-year film student Keziah Manabat became interested in Gerlach's story after seeing it in the media and approached her to create the documentary.
Gerlach says Manabat came into it knowing next to nothing and as soon they began talking, "it all clicked".
She says filming took place in her family home over a week in September last year.
Gerlach was still able to talk at this stage and it showcases interviews with close friends and family, she says.
"In the end, it's a peek into the shock and hope of the journey."
She says it is "very moving and confronting, yet comforting" and "love pours out of it".
The 25-minute film titled Kirsty looks at a day in the life of Gerlach, her journey from the day of diagnosis and sits down with her family to reflect.
She says she always tears up when she sees the film.
Seeing the pain in her children was "heartbreaking" and she finds it hard to "hit those hard memories again".
She says although there is no such thing as a good death, there can be "peace" in it.
"The film is my legacy for them [her children].
"Life can be lived above the rottenness and death can be faced with unshakable hope."
Manabat says her inspiration for the piece came from her interest in how people with terminal illnesses felt about death.
Rotorua woman Kirsty Gerlach talks to a documentary film-maker about living with motor neuron disease. Photo / Stephen Parker
She approached Gerlach in June and it hit home for her when Gerlach said she might not be alive for filming in September.
She looks at Gerlach as an inspiration, someone with so much joy regardless of the cards she has been dealt with.
She says she hopes the film can be passed down generations so her family can carry on her wonderful legacy.
"It was so nice to get to know Kirsty and see the perspective from the people who love her the most."
She is thrilled and nervous for the showcase but hopes it will show Gerlach's incredible "essence" and spread a message of hope.
It was Gerlach's idea to put on the documentary viewing at the local church and the planning of it had "given her an extra spark", says close friend Jessica Newman.
She is still the most "joyful and positive" person she knows and had not changed one bit inside since her diagnosis, says Newman.
"She is a medical miracle."
Newman says the piece had been "beautifully put together" and there "definitely wouldn't be a dry-eye" at the viewing.
Bulbar palsy sufferers progressively lose their ability to speak, to swallow and eventually to breathe. The life expectancy is between six months and three years from the onset of the first symptoms.
A study at the end of last year found that New Zealand's motor neurone disease death rate is the highest in the world and five times the global average.
The viewing will be on September 8 at Living Well Church between 4pm and 5.30pm.
Admission is free, but donations are welcome.
What is motor neurone disease? • The name of a group of diseases which cause the death of the nerve cells that control the muscles that enable us to move, speak, swallow and breathe. • Muscles gradually weaken and waste away causing progressive loss of mobility, speech difficulties and problems breathing and swallowing. • In New Zealand more than 300 people are living with MND. • Each week MND will cause the death of two people in New Zealand. • Symptoms include muscle weakness or cramping and slurring of speech.
