The Start of 2018
Don’t get me wrong, I know the 8th of Jan can hardly be counted as the 1st of Jan. Time has morphed and merged over the last 3 month that it is hard to describe when 2017 ended and when 2018 started. So to me, today, when I have some clarity of thought and a little more head space, I can truly start reflecting proper and start the year afresh.
I can’t start 2018 before mentioning a little about how 2017 concluded. The last days of 2017 for me were filled with bittersweet moments. A highly emotional period. While others may have spent their Christmas and New Year’s Eve celebrating with all smiles and cheers, my family and I spent our days and sometimes nights holding vigil in the hospital.
To those who know me, when I mention my family, it is always beyond my immediate family and extends to my maternal tribe. My mum, the eldest of 8 siblings unofficially took on a matriarchal head role when my grandparents passed away. I grew up with my aunts and uncle living under the same roof or close by. The children grew up with me and my sister as the eldest of the second generation. I never understood how cousins see each other maybe once or twice a year whereas I see most of my cousins at least once a week. We celebrated together, we stayed at each other’s house, we talked about grades, career, housing, finance, politics and swopped advice with each other. No doubt, I grew up with a strong and powerful knowledge that I have an entire ecosystem and network to fall back on. To outsiders, we are described as an anomaly, a family unit who is eerily and annoyingly tight.
The bonds between mother, father, aunty, uncle, niece, nephew, cousins, sister, brother have as a result, been strengthened and entwined so much that these titles and distinction are arbitrary. To us, we are just family.
So, when one member hurts, it reverberates throughout the family network and all hurts as one.
My cousin has been battling with brain cancer since he was 18 years old. At that time, our family took it hard. He was the golden boy, the smart one who also has a heart of gold. Always laughing, always respectful, too mature for his age and just an all round awesome kid. He was and still is, loved by all. Among the 11 of us cousins, he and his sister were the closest to me. We have spent countless sleepless nights all rolled onto one big bed, hiding under the covers whispering gossip about our family and playing games. We would run back from school eager to see each other to spend the afternoon together. When I was old enough, I would take my own transport to their house just to hang out and wait for each other to come back. I remember my reaction then (which honestly hasn’t changed much); I went through the stages of grief in the most typical way. I denied it and refused to believe it was true. When the results came back I was angry and bargained with God to take it away, to take me instead, to perform some form of miracle. I prayed, no I demanded for healing and I was disillusioned and hurt at the thought of his suffering. I don’t believe I was alone, I think most of my family members were praying the exact same words.
And then he made it through that surgery and we heaved a sighed of relief and life went on. A few years later, the tumours came back and in he went again. And again, he bounced back and tackled life with the same enthusiasm and positive attitude as always. And then it came back again and again for the next 10 years. I’ve lost count. I’ve lost count on the number of times he has been in there, in the Intensive Care Unit, in the operating theatre, in the general ward, in the hospital. I’ve seen him in multiple hospitals. Each time, he has made it out, but each time it takes him longer and destroys just a little more of him. His movements, his ability to walk, his mental agility. And each time, he makes it out, he embraces life just that more, he values the family all the more, and he inspires and fights for his right to live. He never want to see the family cry so we always try and hide it, but coming from a predominantly women environment, we are basically running taps next to him. And so, he tries to keep us out of it, he handles and synthesizes the information and makes decision on what surgeries to go for. When his heart stopped at the operating theatre last year and they revived him and he made it out, got married and bought a flat… My cousin has proven it, he is a fighter and a survivor. And barely a few months after that, on December 2017, he had to go in again.
We always knew he was on borrowed time. We always knew he was a ticking bomb. We just allowed ourselves to have hope that’s all. After all, we love him and were just happy to have him around us.
On 6th December, he was scheduled for an operation to remove a tumour that had caused him a seizure. The op was difficult and he came out, unable to speak or move his right limbs. Complications after complications arose and he went in for multiple surgeries and procedures which completely exhausted his body and severely weakened him. He was running a fever, fighting an infection from an open wound that would not close. For the month of December, the vigil in the hospital has started. There were times when he seems to be stable, and there were times when he was plummeting. We had far too many emotional scares and we are not out of the woods yet.
We have different ways of processing this. For me, being in HK, I was glued to the updates coming in on the group chat. Any news that came in sent me into a spiral of an uncontrollable ball of tears, crying into Sam’s arms while I wailed at the injustice. I can be at work and the tears would just come as I thought of the pain he is going through. I can be in the middle of a friend’s gathering and would pause as I wonder how he is doing. For others who are physically closer to him, they see his pain and are more acutely attuned to his suffering than I can ever be. They stay with him in the hospital. They stay with each other to find unity in our common pain.
I flew back from HK to Singapore with Sam on 22nd December. We went to the hospital immediately. I walked in, afraid to do anything watching this poor swollen chap with all the tubes and bandages. Sam walked around, took his hand and spoke to him gently. We tried to be light-hearted, we joked, we tell stories about what we were going to do… We hit silence because we ran out of things to say. We were choked by our own emotions to stay longer. The waiting area outside the ICU was soon commandeered by the family. Even though we couldn’t do anything, we draw comfort from being near him and near to each other. The family had earlier made plans to go to Batam to celebrate Christmas. Even though we knew he would not be able to join us, we carried on thinking it was only 2 days away and we should go on with our celebration. Some members opted out, preferring to stay with him, the rest of us proceeded. No point moping around the hospital. The night before we left, Sam and I visited him on our own. It was late at night and I walked in, held his hands and prayed with him. I made him laugh, I told him I love him and I’m so proud of him fighting so hard. He looked at me and acknowledged my presence which was enough for me but it made leaving him all the more harder.
On arrival at the resort, at 5.30pm, my family received a call that he had 72 hours to make it through. They would not be doing any more operations, it seemed so bleak. We made plans to return the next day. We cried in the beautiful resort while the sun was setting. I recorded a message for him, I recorded a message from Ryan for him.
A few hours later, we agreed that this was not the way to spend Christmas and we should carry on with our celebrations as we were still family. We played games, we sang song, we drank, we ate, we laughed. My family has proven of our resilience and strength, no matter what, the circle of life continues.
And then morning came and we rushed back to Singapore. Straight to the hospital. What was the hardest for me was when the priest came in to give my cousin his last rites. Seeing him place the cross on his body, blessing his head with water, telling him to let go if it is God’s will and find peace… That broke me. I was struggling to calm the side of me that didnt want to let go and the side of me that had come to terms with the finality of his situation. Earlier that week, his wife had whispered to him; “Dear, if God wants you to go, you just go ok, we will all be ok.” Even my cousin, in his sedated and fuzzy state can shake his head in protest. That’s my cousin, he is a fighter.
He made it past the 72 hours mark. He stabilised. I remembered Sam and I hugging my family at the hospital late on Christmas eve, wishing them Merry Christmas at the stroke of midnight. So much love.
The next week was an androgynous concept of time where we spent each day balancing between work, gym, eating and heading to the hospital. Some days, my cousin was so alert he was listening to everything you say. He can’t speak but he can squeeze your hands and look at you. Some days, his eyes were rolling as he drifted in and out of consciousness.
Then the doctors came and gave us the options. We would not be able to operate any more on him as his brain has undergone tremendous stress from this last op. He has permanent brain damage and therefore we should not expect recovery of his right limbs or speech. He has an unhealed and open wound and has high fever from the infection. Option 1: Wean him off antibiotics and let his illness consume him. Option 2: Go for a high stakes surgery to patch his wound by grafting a patch of skin from another part of his body. This does not give him a prolonged life, even if the surgery was successful, he would only have less than 6 months to live. Going for such a surgery meant that he could come out of it even more uncomfortable and even more dysfunctional that he is now at the moment. He could even be on life support. Option 3: Go for the surgery and if anything happens, agree to a DNR (Do not resuscitate) so he can die on the operating table – in their words; a more dignified way to go.
We chose option 3.
It was his wife who had to deliver the news to him. How, how do you tell someone the choice you have made. How do you tell someone to prepare for death. But she did. She told him, as practically as you can through tears, how she believed he would want it too and how she would not hesitate to personally pull him off life support if it comes to that as she does not want to prolong his suffering. She told him of the prognosis and why she made the decision. How she knows he is not one to shy away from this and to approach this with courage and strength.
In a rare moment in a state of clarity, he looked at her and nodded in agreement to everything.
I have learnt many lessons in the space of a few weeks. I have learnt and seen true courage, I have learnt and seen true love. Never before have the saying; “through thick and thin” resonates so much as seeing the young couple in front of me, holding each other’s hands, staring into each other’s eyes and tearing. Never have I ever been so grateful and blessed to have the family that I have because the amount of love, the outpouring of support is overwhelming. Never have I been so confronted with the realities of mortality and life that it has forcibly heightened the sense of what is important. Never have I cried so much, so continuously for so many days.
It’s now 8th of Jan. My cousin has survived yet another operation. Since I saw him a few hours ago, he is super alert with a healthy hue. He has the ability to smile and his left hand seems stronger. The operation has gone smoothly and his infection and fever has dissipated. I am heading back to Hong Kong with an ease of mind. I know my cousin does not have any delusions about what he is fighting for, he knows his timeline, he is fighting now to die in the comforts of his home and not in the hospital. I have once again, been humbled by the fortitude of his strength and resolve.
My last moments with him before I boarded the plane was nothing short of poignant. I looked him in the eye and said “I love you, very much”. He removed his hand from his wife and lifted them to me, all the while, locking eyes with me. I took his hand and he placed it on his chest. The message back was clear, I love you too.
And it is with these learnings, these mixed feelings of sadness and love that I crossed the new year and begin 2018. Along with it, a determination to make better use of the life that I have. Unlike my cousin, I have been dealt with a better hand in life. I am healthy, have resources of my own and am independent. What am I going to do with my life so that when I see him next, I can proudly tell him, it’s because of you, you have inspired me to do these, to be these and to choose these.
And so, with a heavy, humbled but reinvigorated heart, I begin my 2018 journey anew.
