Note: English translation of Chinese in Project Details.
Residency #14 – Tan Ngiap Heng – Holding Space
Artist Statement
We loose a loved one to a chronic or terminal illness. Or perhaps we are the one facing this illness.
Sometimes a doctor can tell us how or what is happening, but it does not empower us. There is no turning back time, no solution to the inevitable. No one can really give us an answer to the loss of a loved one, because there is no answer. There is simply that loss.
So it is futile to attempt answering the loss. We ‘Hold Space’ for someone in pain by being there for that person. We can only be present, provide compassion, a human touch that is light. ‘Holding Space’ is simply support for living life once a part of us is lost.
This project is an attempt to ‘Hold Space’ for caregivers and people facing chronic or terminal illness, even though there is no true way to resolve the loss or even comprehend it. The process is awkward, the results too simplistic. However, in ‘Holding Space’ for one another, life continues, a part has gone, a part remains inside us.
What gives us strength to live on? Our faith? Our family? Our Community?
Mum and Dad: Then and Now (2018)
ngiap-heng_chinese-text-translations
Exactly Foundation – Residency #14 – Holding Space by Tan Ngiap Heng
December 2018, Singapore
NOTE: No part of ANY text and material related to Holding Space can be used, copied, published or quoted without written permission from the author(s).
Artist’s Statement
27thApril 2019
In 2010, while traveling overland from Singapore to London, I got a phone call from my father who was on holiday in London and I was in Helsinki, he told me that he had a stroke. I had to fly to London and look after him and my mother for six weeks. After which we flew him back to Singapore. I have been his care giver ever since then. Since then, my mother also had a stroke in 2015 and my father had a heart attack in 2017. I have set up my parents’ house as a care centre. It has not been an easy journey for me. And it has never been the same from moment to moment, incident to incident. Several times both my parents have been close to death, and I had to face a load of intractable questions. My family and friends gave me support. I had to slowly find good help to look after my parents. I had to also look after myself, I had to pace my life and I got myself a counsellor.
So this is my starting point, how do people care give for chronic or terminal family or friends? Looking at the location of the Exactly Foundation, where there are religious institutions from all the major religions, I wondered how people found the strength to continue through the challenges of the care giving process. Coming from an non religious but spiritual family, I had to work my own way through the grief and acceptance with the philosophy left to me by my father who was a meditation teacher. I did not so much go back to his lecture notes, but all the lessons that he had imparted to me before his stroke, and his rationale for them, had given me a framework to understand and accept that death is inevitable. I had also learned that one had to be grateful for all the good times in life, to accept it’s painful and bitter challenges. When I was younger my father said that he did not want a funeral when he died, he wanted a celebration. I could not understand that then, but now I can. I can understand how he has profoundly given me and many of his students the tools to navigate this harsh reality of life.
So I was curious how other people cope. This started making me question, what is the relationship between family or close friends who are confronted with the fragility of their lives? Modern medicine sometimes distracts us from the loss and the grieving within with courses of actions that we can take. There are so many practical decisions to be made, all seemingly in an effort to prolong life, but without asking about the quality of life of the patient. And as a care giver, it is also important to understand what the patient would have wanted if they had been able to speak for themselves. Care givers sometimes can only make the best decision that they can with what they know, and live with the consequences. In the midst of the emergencies, there is no time to work out the emotional challenges. There is really no correct answer. How do care givers cope? How do friends and loved ones support care givers? There are never really the words to say that actually gives comfort. What then can someone do? They can hold space for the care giver, acknowledging their situation, listening to the care givers and witnessing their emotions. Aging and death can only be put off so long. At some point of time we all have to transition from care givers to people who hold space for people coming to terms with their mortality. Sometimes we have to hold space for ourselves, as we grapple with the fragility of our own bodies.
Holding Spaceis about being a conscious, supportive, non-judgemental witness to a person facing
the incomprehensible end of someone they love or even themselves. Humans are complex, thinking, storytelling beings. There is no truly logical way to understand how a life is strung between birth and the inevitable ensuing death. For once we are born, we only know living. How do we measure the worth of a life well-lived? Can we really not go gently into the good night? Can we be consoled with family and friends sending us off with love? Do our religious beliefs give us hope of a heaven after life? After being part of a family or community for a long time, how does one person’s journey end in the physical plane? How does it continue in the memories of those who remain?
Added to the complex emotions are difficult practical and medical questions. What decisions can and should a caregiver make when a patient is no longer able to represent themselves? When does a family defer to a doctor’s advice? When should medical practitioners override the decisions of the family? How strict a framework can the government set on people who have chronic diseases or are facing complex end of life situations? How can one define their wishes before they are not able to speak for themselves? What is the tension between a doctor’s imperative to prolong a life and a patient’s comfort at the end of life?
Holding Space is a photographic project, which attempts to be a practice of holding space for families who are in the middle of dealing with mortality, chronic illness and the fragility of life. The project does not attempt to look for answers as there is no prescriptive answer for what individuals and families face. And yet, how families navigate such a personal, challenging time, can be informative for the greater community. Using photography, found materials and interviews to consciously bear witness, it is hoped that the collected material will spark conversations in a larger audience. The contemplation of death and how we support those approaching death can teach us a lot about what is important in life. It can teach us to live life in a more meaningful way.
In this project, I have been very fortunate to meet people who were willing to share their stories with me. Some were patients and other were care givers. Some patients face terminal illnesses while others face chronic illnesses, and I had a range of different ages. Although this is a photographic project, the most important process was to listen to the people involved to hold space for them. At least a couple of times I was told that it was cathartic to open up to me. To be able to share their stories with someone else. On my part, I found the stories heart wrenching at times, and also inspiring that people have found ways to continue living and functioning in spite of their circumstances. And I think that to me, I learned that resistance is futile in the long run, and acceptance of the reality of life enables one to cope with the challenges. I also learned that if one lives life fully, without regrets, then death does not hold one in a grip of fear.
The stories I have from eight different families are all complex. As much as photographs can capture emotions, they hardly suffice to tell the complex and layered stories of each family. And so I layered the portraits that I took, with images from my subjects and layered it with excerpts of the interviews I had with them. I was trying to extract the most salient passages, but the amount of text shows how truly difficult it is to summarize the stories. In some ways it shows the limitations of photographic images to reveal the context of its making.
Acknowledgements
I would like to thank Li Li Chung who invited me for this residency with Exactly foundation. I appreciate the conversation and guidance of Dr Teoh Ren Shang. Sr Geraldine Tan from St Joseph’s Home was very kind for allowing me to meet and interview Joey Kurian. I thank Checkpoint Theatre for kindly letting me have photographs from their archive. Tan Ching Yee, Cindy Chew, Irene Lee and Li Li Lee, from Hospice Care, were very supportive of the project and introduced me to two of the subjects. I appreciate their help and the role they play in our aging society. I would like to thank Chee Wei Teck for helping me transcribe some Chinese interviews and my wife for writing out the Chinese text. Last but not least, I would like to thank my subjects who were very generous with their time and energy to share their very personal stories with me. I hope that I also helped them hold space in their current situations.
Exactly Foundation – Residency #14 – Holding Space by Tan Ngiap Heng
December 2018, Singapore
NOTE: No part of ANY text and material related to Holding Space can be used, copied, published or quoted without written permission from the author(s).
Word from the ‘Wart
27th April 2019
What is holding whatever? Is it a standstill? Is it waiting? Holding still, holding tight? Is it about bracing for some even bigger disaster? Is it coming to terms with the unknown? It is so uncomfortable.
Ngiap Heng’s Holding Space happened at a most opportune time for me personally, to reflect on my own experience. My 100-year-old mother passed away this March 11th, in the midst of this project. I knew that that call would come, but when it did, it was still disbelief. My mother had dementia for 20 years, mostly in fulltime care, in an elder care home in Taipei. My mother lived in Taipei and I here in Singapore, so I outsourced her care. I have to constantly reason with myself that there is care and there is care. My siblings (both in North America) and I are the caregivers but the daily chores of physical care can be (and are) delivered by a hired professional, 24×7. I ask myself: why can’t I do everything, like a good daughter? Only obvious to me over time, I found that with time and immobile-ness, my petite mother expanded to 67 kilos; I am not strong enough to do the frequent lifting of her to/from bed and wheelchair, which was for nearly ten years. However, I convinced myself that despite her advanced dementia in the last decade, she did acknowledge my presence by flickering her eyelids and moving her lips. That was the entire extent of our communication for the last ten years. The emotional care of my mother is my job; the physical can be outsourced.
When my mother developed breathing difficulties late last year, she went into ICU and had to undergo a tracheostomy (cutting an opening in her neck, below her vocal cords to place a tube into her windpipe, allowing for air to enter directly into her lungs). The procedure is considered uncomplicated (normally takes 15-20 minutes), but she was in surgery for an hour; the last 30 minutes of not knowing what was going on was excruciating.
The big question from the medical staff was always: “do we resuscitate?” They said that she is so old, resuscitation is aggressive, so aggressive that it would damage her. So what’s our decision? I had to think very hard, consulting my two older siblings. We had mixed feelings as our mother did not leave any instructions. Death is a topic that our mother refused to talk about. We finally said “yes, resuscitate” and I added, “yes, at least once”. I thought very hard: not what I personally would have wanted, but what our mother would have wanted. I centered the decision on her character, what I remember of her. While growing up, our mother would go all out to preserve life, for herself and her loved ones. One sniffle and her aspirin tablet would show up. She had not gotten to 100, ignoring being sick. She would have wanted us to try to resuscitate her.
My mother was a devout Christian, daughter of a pastor, married to a pastor. She believed dying to is going home to heaven, to God. And yet, she had great discomfort about her journey getting there, the pain of ill health and treatment, the pain of loss, and the pain of not seeing her children, grandchildren and great grandchildren. I often wonder if she could change and take comfort in the possibility of seeing again the people she loved, who had passed on (her husband, her own family).
What do I believe? It is natural to live and natural to die. From the moment we are born, we are already expiring. Yet, there is so much living to do, so consuming that we don’t want to think about death. What I am and can still become are in God’s hands and I trust Him to put angels in my path. I admire my mother for her tenacity, stamina, love for food and just plain goodness. I want to be like my mother … but I also don’t: I want to be better prepared. End-of-life preparation adds to faith and headspace to enjoy living. It also removes confusion, mystery and unwanted help for my son (who lives overseas); to minimize his fumbling around gives me peace of mind. Yet, I find Singapore social welfare policies lacking in options for individualized planning; the assumption is that immediate family is the primary port-of-call. What if one doesn’t have family in Singapore or live in private housing? Where is the licensed caregiver?
Anyone’s final end is easy to grasp (you are dead, done), it is what’s in-between that is so trying. Imagining God, He will throw me a surprise. I need more options. Today, at the end of each day for me, Holding Space is about holding on.
