Category Archives: Journal

18/08/2020 marks a 100 days since Mizah passed.
It would also have been our 7th wedding anniversary.
It’s hard to not see it as more than a coincidence.

It’s been a few weeks since I discovered the coincidence of dates. It kept surfacing up in my mind and demanded attention, and I eventually did what all of grieving demands of me. I sat with it. I didn’t have the strength to revisit wedding photos and videos. But I did dust off the words that I wrote and promised her:

1. I vow to always treat you with tenderness, warmth and love, not only when you are easy to love, but also when you are difficult or when I am.
2. I vow to be your husband, your friend, your soulmate, in young and old age, good fortune and bad luck, dark sickness and pink of health and everything else in between.
3. I vow to begin and end each day together with love and gratitude for your presence in my life.
4. I vow to be open, loyal, respectful and truthful to you in every thought and action.
5. I vow to love you for who you are and none of your current or future scars can make me love you any less.

We had also hoped for a life that we could live well with each other, have kids, grow old together, and then ’till death do us part’; but we only got two out it. That’s the life that we were gifted and it was still pretty damn good.

It’s no surprise or secret that she was the best of me and the one who brought out the best in me. I was a man in search for a home and I found it in wherever she was. She was my companion and my light, and now she is a star — one of the stars in the universe that might be gone but still sending its light through space and time, bright in the sky, beautiful to look at, and still helping me to navigate through new adventures.

It’s fair to say that the last 100 days have been nothing short of a wild adventure. In that time span, I have:

• Lived through the Hari Raya Puasa & Hari Raya Haji festivities without her
• Lived through her birthday without her
• Went into isolation and then learned how to crawl out of it to meet close friends and family.
• Packed and donated away a lot of our things
• Experienced too many flashbacks from the last 3 months of the most intense stage of caregiving while under Covid19 lockdown
• Seen my therapist a few times
• Slept very little and a lot
• Cried a lot at predictable times. Then a lot at unexpected times. And now just letting it happen when it needs to happen which on the whole is slightly lesser
• Struggled with being sad, and then learning how to live with it
• Started learning how to cook properly
• Watched too much Netflix
• Got a PC and started playing PC games
• Got back to work and started to try and figure things out by going through it
• Got back to a meditation practice
• Learned to put the social back in social media but not ready to put social into social life
• Wrote more words than I’ve written in the last 1 year
• Walked hundreds of kilometers
• Considered and embraced the possibility that there are new adventures to be lived
• Decided to sell the house and start afresh elsewhere
• Start designing my new house
• Re-learn how to smile & laugh & enjoy things
• Tried to bake bread
• Adopted a cat

Clearly a lot has happened in that 100 days. A period where Grief and Happiness have been slowly converging to become a completely new set of feelings that I am constantly learning how to be comfortable with. Behind all of this is the promise I made to Mizah towards the end of her life. She was always worried about what my life would look like in the future and she made me give her my word that I will take care of myself and figure out how to move on. That is the nudge behind all the things I am doing, and the rest is just pure momentum.

It has been 101 days since Mizah said her last words to me. Deep in the middle of the night, after I had cleaned and carried her to the bed, she muttered weakly to me, “Thank You Sayang”. I replied with a whisper to her ear, “I love you, now go get some rest.” I didn’t know then that it would be the last words we would say to each other. I hope she knows that the pleasure, honour, and privilege of the life we had together was all mine. All 7 glorious years of married life and the couple before that when she became part of my life.

7 years later, 100 days later, and many more to come. She is and will always be loved.

Back in 2011/2012, I was living in a small single-storey black-and-white house in Changi Village. I was then dating a young lady named Mizah and I knew of a small corner shop in the neighbourhood that sells good-looking and delicious chocolate cakes. I bought the cake to celebrate special occasions with her. Little did I know that both the girl and the cake would be so important in my life.

We loved the cake a lot and it became our shared indulgence. We bought the same cake for each one of our birthday. It became our thing.

Today would have been her 34th, but 33rd was her last. She lived all of it fully with joy & love, and I’m glad that she managed to enjoy her last one with the people who mattered most to her.

I cannot share this cake with her anymore but I bought it anyway and shared it with the P!D team. Though we cannot celebrate this with her, we will always celebrate everything about her. We ate cake and smiled because that’s how it has always been with her. That’s how we remember the Mizah that we all love.

I supposes the whole point of this is: a cake is not just a cake. It is an opportunity to make memories. So always eat cake with your loved ones.

“Now shall I walk or shall I ride?

‘Ride,’ Pleasure said;

‘Walk,’ Joy replied.”

― W.H. Davies

I’ve been doing a lot of walking lately. Long walks, alone.

Instead of trails across lakes and mountains, I settle for pavements.

One foot in front of another, along park connectors and water collectors, because that is all I have for now.

~

I see couples & families strolling & cycling;

men & women checking their Apple Watches while jogging past me who is just glad to be walking.

It’s not the kilometers that I am clocking but I’m just walking so that I am moving

and right now I’m thinking that there is a metaphor in here, waiting.

~

This walking is my way of figuring out things.

A conversation with myself on being. In some ways, an act of becoming.

It is me, committing to asking myself answer-less questions of person, profession, and passion,

and lately, of legacy and me.

~

And so I walk without destination to channel the laws of Newton and put some momentum in a certain direction.

I take these repetitive meditative steps to settle the mind and remind myself that life has a way of working out fine.

~

In a way, with each step I complete I plant a seed for a tomorrow where perhaps this sorrow can grow to something else.

Maybe a kind of morning where there is less mourning.

Maybe a kind of loving of this life that we’re living.

Maybe if I keep walking, keep moving,

and maybe if I do it enough,

I will see a clearing with a path.

“There was nowhere to go but everywhere.”

– Jack Kerouac

The journey that Mizah and I went through – Mizah as a cancer fighter, and myself as a caregiver – was helped along by not just families, friends, and medical professionals. We also leaned on the generous sharing of experiences by others who have gone through this arduous journey to get us through it. Their stories gave us guidance through the mental and emotional battles that accompanied the physical challenges, and listening to them offered us hope, strength, comfort, and wisdom. It also reminded us that although many do not understand what we have to go through, there are many others who do.

This list is for you and your loved ones. I tend to consume media across disciplines, perspectives, and faiths so that I can form my own position and approach to things. Your mileage from these might differ but I do hope it helps you in some way.

:: If you have other resources to add to this list, please send me a DM (@adibjalal) on IG, Twitter or email ~ hello@adibjalal.com

Podcasts

Videos

Heal – A Documentary

TED talk video by cancer survivor, Suleika Jaouad

TED talk by creator of Terrible, Thanks for Asking podcast, Nora McIrney

Books

The Art of Letting God by Mizi Wahid

Call Upon Him by Mizi Wahid

Chasing Daylight: How My Forthcoming Death Transformed My Life by Eugene O’ Kelley

That Good Night – Life and Medicine in the Eleventh Hour by Sunita Puri

When Things Fall Apart by Pema Chodron

Radical Remission by Kelly A. Turner, PhD

A Year to Live – How to Live This Year as If It Were Your Last by Stephen Levine

Radical Compassion by Tara Brach

1.

Finding the right combination of words has been difficult lately. I struggle to find the right words to reply when I am asked ‘How are you doing?’, and I’ve also found it challenging to figure out what to write about, how to write it, and in what order. It’s not for a lack of things to say but rather, how to capture it wholly, in all its splendour and range of human emotion.

I looked through my journal for clues and I saw incoherent sentences alongside lengthy paragraphs sprawled across the pages. I saw confusion, contradictions, and occasionally, clarity in my words. I saw the actions and emotions that were both documented and left unwritten. It sent me into a warped vortex of time and space as I recalled what life has been like over the last two weeks.

2.

The first few days of Mizah’s passing remains nothing more than a sketch in my mind and all I know about it is that it was filled with deep pain and grief. There was an emotional backlog that rushed to the surface very quickly. All I could feel was a release of the pain and sadness built up over the last of couple years that I’ve had to block out in order for me to function as Mizah’s primary caregiver. There was a lot of crying and anguish. Each part of the house was and still remains a trigger point that flash memories of all the suffering that she had to endure. It feels like a form of PTSD that I may have to live with for a while.

The momentum of post-funeral administrative tasks helped to direct my attention elsewhere for the first week. I busied myself with coordinating legal and financial matters, taking stock and donating away Mizah’s surplus medical supplies, and sending thank you notes in small batches. The social restrictions from the Covid-19 pandemic meant that there was very limited contact with family members, something which was both a struggle and a blessing for I did not have the energy to engage with others. Having my sister live with me during this period helped to remind me of the presence of other humans in this world.

With it being the fasting month of Ramadan, I took refuge in prayers, seeking blessings for Mizah, expressing gratitude for all the love and guidance that has come my way, and begged for strength and wisdom to take the next step. Sleep was scarce as my mind and body struggled to come to terms with what was happening. The vacuum of time was often filled with sorrow and it was hard to feel anything else.

3.

A morsel of strength presented itself at the start of the second week. It was a flash, one that sparked me to engage in a bit of self-care. I decided that I needed to go for a long overdue haircut to give myself a boost. I also booked a session with my therapist to start working through my front row experience to this life event. I created a to-do list with more administrative tasks to help direct my attention – a technique that seemed to be effective a week ago. How stupid was I to think that it would be that straight forward.

A much greater force hit me. My days which were already featureless due to the Covid-19 Circuit Breaker limits had its hollowness amplified. I felt how aimless and purposeless my life had become. My heart was heavy from being empty. I wanted so badly to hold on to the glimmer of strength that I had touched briefly in the beginning of the week but it was futile. The days were dark and difficult and I had to make an extraordinary effort to hold on to the light that Mizah was in order to get me through it.  Large segments of the day simply dissolved into thin air, inexplicably unaccounted for as day turned into night. On good days, I felt numb enough to not feel anything and able to work on my to-do list. On bad ones, I spent most of it curled up in a ball on my bed, incapable of doing anything.

That second weekend after Mizah’s passing was also made harder as it was Hari Raya Puasa. Already mellowed down by the pandemic-led restrictions, a world without Mizah was more acutely felt. There was no desire for any form of celebration and I couldn’t bear the weight of not having the love of my life with me. Since her diagnosis in April 2018, we knew that being able to celebrate any Hari Raya after that would be a blessing, and this is to be the year that I ran out of it. The night before Hari Raya and the morning of it was unbearably painful.

I stayed away from social media and any festive entertainment shows for most of the day so that I would not have any reason to feel jealous at the joy that others have the opportunity to feel. I gave myself permission to cry a little bit in the morning but vowed to myself that I would not bring my sadness to the Zoom video conference gatherings with family members. I willed myself to find comfort and joy in the love and care that my family has shown me in this difficult times. All I wanted to do was survive the day.

4.

I am unsure how I survived that second week after Mizah’s passing, but as I began this third week, it felt as though a switch in me has been flipped. There seems to be some space that has opened up inside me. A space where other emotions can co-exist beside my grief.

I have felt a tiny desire to reach out to some friends. I have felt a small urge to get myself exercising. I have felt a glimpse of comfort, peace, and perhaps even joy manifesting in the cracks. Alongside these glimmers of positivity were also the emergence of new existential troubles and life concerns that have been suppressed so far. The pain from losing and missing Mizah still sits firmly in me and I still have trouble sleeping at the end of my aimless days, but it seems that there is now a wider gamut of emotions all existing beside one another in me. Sometimes I go through an entire range of emotions in a single day, and sometimes they clash to exist together in a single moment. It’s a different kind of difficult and I am trying my best to hold space for it.

5.

In recent days, I have started to answer the question  “How are you doing?” with some variations of the statement: “Some days are terrible, some days are better.” It’s broad, but those are the best words I can come up with for what life has been like since Mizah passed away on 10th May 2020.

Then, when I think of the right words to write the rest of this story that Mizah and I have lived through, I not only see sorrow and despair, but also a lot of faith, grace, joy, and gratitude. I see a story about love and hope too, right alongside all the shittiness and rage that occasionally breaks through the surface.

However, this story is not special. Every day, there are many others who go through much worse than what Mizah and I experienced and there are many who did not enjoy the privileges that we had. I am only hoping that my story can give others who cannot fathom what having their person go through cancer, a glimpse of what it is like. And if some of all this tragically resonates with another stranger out there, I’m sorry that you’ve lost your person too and I hope you find a light to navigate your way through it.

It has been 7 days of waking up to the emptiness on the other side of the bed. At times, my brain still thinks that my wife is warded in hospital for one of her long hospitalisation spells, and I can get up, get dressed, and be by her side to accompany and comfort her. This would then be rudely and quickly replaced by the memory of her taking her last breath on this very same bed, the funeral rites in this very house, of me climbing down into the ground to lay her lifeless body to rest, and looking back to only see a pile of earth to mark her final resting place.

Over the past days, I have also received hundreds of messages from family and friends, close and distant, mine and hers. Unfortunately, I am incapable of replying individually to each one of you, but please know that I am deeply grateful for the condolences, tributes, and check-ins. I have read it all, and it has been both heartwarming and heartbreaking to be reminded of what a wonderful woman Mizah was, and that we all have to refer to her in the past tense.

In Mizah, I found a true partner in life and work. In her, I found someone who was my better half in every sense of the word. In her, I found love and hope. Our lives were intertwined so deeply and she was the sun which my life revolved around. I have no doubt that she was a blessing from God to me, both in good health and when she was ill.

She was the kind and gentle queen of many hearts. Her own heart was beautiful, her self was beautiful, and she made everything and everyone around her more beautiful. A quiet calmness descends when she is around, and her light always made the people around her feel comforted and safe even in the darkest of times. She was also always thinking and caring about others even when she herself needed the most care.

Someone half-joked that while Mizah was small, she left big shoes to be filled. She found her purpose in giving a voice to others in the design process, and used her talents and willpower to make it a reality. She was a quiet force of nature who was fiercely determined and courageous as she ventured for what she believed in. She achieved more in her short career than what some of us can ever hope for. Yet, despite being recognised all over the world, she was always humble and was never motivated or distracted by fame or wealth. The impact of her work will continue to reverberate for many years to come, and the light that she has lit in the field of participatory design in Singapore will continue to guide many others.

Unfortunately, everything will be taken away from us at one time – inevitably.

For Mizah and me, that started in April 2018 when she was diagnosed with Stage IV Colon Cancer. It was unexpected and shocking. Only close family members and a small circle of friends were made aware of it, and I had the privilege to walk beside her at every step till the end. This privacy enabled Mizah to live on her own terms and for us to navigate through it in our own way. We went through and learnt much, and she was brave and graceful throughout it all. But in the end, cancer broke her body and my heart. In the end, I found myself comforting her for the last time as I received her body in the grave and buried her.

Today, there is a choking pain that sits between my throat and chest. There is an intense emptiness everywhere I look. Even as I try to find my feet again, my spirit shatters silently everyday. And yet, I know she would want me to find the courage to live with love and joy without her because that’s the kind of person she was. It was also her wish that I find the words in me again so that I can write my way through my grief and offer some light to those who may have to go through what we had to.

It will be difficult, but for her, I must try.