“The project gave my father strength and purpose”

Safi Alia Shabaik is the US-based photographer behind ‘Personality Crash’, a visual series documenting her father’s experience of Parkinson’s. She shares what it was like to collaborate with her father on this moving project – and how it has highlighted the need for “open conversations”

Tell us a bit about yourself.

I am a Los Angeles-based interdisciplinary artist working in photography, collage, sculpture and experimental video. I grew up in the San Fernando Valley, just over the hill from Hollywood, where I was raised by culturally diverse parents – my father was Egyptian and my mother descends from French, Scottish and Native American bloodlines.

I have always been a little atypical. I love anomalies and oddities, things that are curious or different, and gravitate towards things that most people would choose to overlook. My parents instilled in me an appreciation for the beauty of difference and individuality at a very young age. This continues to shape me as an adult and has heavily influenced my creative subject matter.

Having pursued an eclectic and creative life path on both coasts of the US, I returned to Los Angeles when my mother noticed changes taking place with my father. I cared for my father during the last few years of his Parkinson’s journey.

“Papa receives a kiss from Virginia, his wife of 49 years.” Credit: Safi Alia Shabaik.

What is your photography series ‘Personality Crash’ about?

In the early stages of his Parkinson’s diagnosis, my father and I agreed to make this body of work to help bring us closer – knowing illness would eventually pull us apart. With my role as documentarian and eventually primary caregiver, we created the work for a handful of years until my father’s death on the first day of the new year in 2018.

‘Personality Crash: Portraits of My Father Who Suffered from Advanced Stages of Parkinson’s Disease, Dementia and Sundowners Syndrome’ explores the human condition when altered by disease from an intimate perspective. The work presents my family’s personal story, but also serves as a universal reminder of what it means to be human.

Our collaboration stemmed from a heartfelt desire to understand disease, mental illness and loss of self. My father was an active participant and collaborator from the beginning until his last living day. I would often have the camera by my side while tending to him in case a moment arose that he or I thought should be captured. We agreed to present an honest and compassionate story to honour his journey. The project gave him strength and daily purpose.

“Papa pauses at the bathroom sink, ready to begin his morning routine.” Credit: Safi Alia Shabaik.

Tell us about your father and his experience of Parkinson’s.

Aly Shabaik was the first of his family to leave Egypt, when he moved to the US to pursue higher education in a language that was not his native tongue, carving a path for his younger siblings to eventually follow suit. He received a PhD in Mechanical Engineering from UC Berkeley, found love, created a family and provided a very comfortable life for all of us.

My father’s generosity was enormous, yet he gave without the need for recognition. He loved dining with family and friends, and secretly picking up the tab. He loved teaching me how to build things out of wood and how to use hammers and power tools safely. He was a quirky dancer, fabulous builder and technical genius, and he would steadfastly attribute any problem-solving successes to his “ancient Egyptian ingenuity!”. He also had the cutest accent and an unusual sense of humour. His arms seemed to stretch the length of the earth and envelop my little body in the most protective hugs. His love for us was infinite and unwavering, as was ours for him.

He was diagnosed with Parkinson’s seven or eight years prior to his death in 2018. Initially, we noticed some changes in his facial expressions, personality traits, attention span and the development of a small tremor in his right hand. As Parkinson’s progressed, he experienced many recognisable symptoms including bradykinesia, gait freezing, drooling, fatigue, irritability and an overall muscle rigidity. In his final year, he experienced hallucinations that presented the onset of dementia.

How did it feel to have a parent diagnosed with Parkinson’s?

It was tough to find out about the diagnosis – no one wants to receive news of a life-altering disease, for themselves or a loved one. It’s devastating. Having no real connection or exposure to anyone with Parkinson’s, we had no idea what to expect. But having a diagnosis meant my mum and I could research steps to make the journey more manageable for Papa and for us.

This condition doesn’t just affect the individual – it also affects the family. It became a daily reminder of my own mortality and gave me focus to adjust my own life priorities and goals.

“Virginia helps Papa get dressed.” Credit: Safi Alia Shabaik.

What was it like to document your father’s experience?

The most challenging part of the collaboration was bearing witness to the intricacies of my father’s decline. He had been my protector, champion and role model, who seemed indestructible in my eyes. In his last year, my father had increasing moments of confusion, hallucination and disorientation. I literally parented my parent and would go to all ends to guarantee his visibility and dignity in the world.

But on the flip side, my father and I got to spend an incredible amount of time together. We became even closer through this journey. He was always a loving father and towards the end of his life, he would often reach out from his home hospital bed for a hug and tell me that I was from heaven. It was his way of expressing his gratitude and I will always treasure those moments. He was very proud of this project and collaboration.

“Papa sits on his shower bench and conducts his morning shower routine.” Credit: Safi Alia Shabaik.

What do you hope to achieve through your collaboration with Parkinson’s Foundation?

Our intentions are to bring visibility, raise awareness and encourage dialogue about the multifaceted complexities of Parkinson’s disease, aging with disability, end-of-life care and dying with dignity. The importance of teaching compassion for those living with this condition is immediate, as instances of the condition will only increase with time. We hope to educate those unfamiliar with Parkinson’s, and to provide understanding for those experiencing a similar journey.

Why is it important to encourage conversations about Parkinson’s and end-of-life care?

This journey with my father reinforced the notion that it is necessary to be unapologetically vocal, and to strongly advocate for oneself or for loved ones who cannot advocate for themselves. You have to do your own research, be firm in your requests and not settle for the status quo.

“Though Papa is sound asleep, his dreams appear to be hallucinogenic.” Credit: Safi Alia Shabaik.

Disease, dying and the active transition from life to death are topics that are not embraced openly in our society, so I agree with the ‘death positive movement’ – that these topics should be discussed. I believe it is empowering to understand your options and make decisions that align with your own beliefs and choices. We must have open conversations about these topics to remove the stigma, create awareness and embrace diversity.

No two experiences are the same, which means each of us holds the gift of teaching and learning from each other – but we have to share our stories openly to allow that. If our experience can help others gain understanding, then we’ve achieved something.

Read more:

“I want to break the silence and stigma associated with Parkinson’s disease”

A father and daughter on how Parkinson’s disease changed their lives