100 Days After Jaya

Jaya

Patton Oswalt is a famous stand-up comedian who Lesley and I have long enjoyed. He lost his wife suddenly, about a month before we lost Jaya. His story hit us when it happened. Little did we know we’d experience our own version soon after; our infant daughter instead of his wife. He wrote about grief around the 100-day mark, and I was struck how closely his experience matched ours.

Source: https://www.facebook.com/pattonoswalt/posts/10154029789952655

But 102 days at the mercy of grief and loss feels like 102 years and you have shit to show for it. You will not be physically healthier. You will not feel “wiser.” You will not have “closure.” You will not have “perspective” or “resilience” or “a new sense of self.” You WILL have solid knowledge of fear, exhaustion and a new appreciation for the randomness and horror of the universe. And you’ll also realize that 102 days is nothing but a warm-up for things to come.
You will have been shown new levels of humanity and grace and intelligence by your family and friends. They will show up for you, physically and emotionally, in ways which make you take careful note, and say to yourself, “Make sure to try to do that for someone else someday.” Complete strangers will send you genuinely touching messages on Facebook and Twitter, or will somehow figure out your address to send you letters which you’ll keep and re-read ’cause you can’t believe how helpful they are. And, if you’re a parent? You’ll wish you were your kid’s age, because the way they embrace despair and joy are at a purer level that you’re going to have to reconnect with, to reach backwards through years of calcified cynicism and ironic detachment.

He inspired me to write about our love and loss for Jaya once again, and about the path through grief. One of his albums is called “My Weakness Is Strong”, which — though unintended — is a pretty succinct characterization of my struggle with grief. A collection of unconnected thoughts about losing one of the great (if brief) loves of your life follows.


I’m a photographer (among other things). On one hand, this brings me great joy, knowing we have some amazing memories captured of Jaya with her family and on her travels. On the other hand, I can’t look at many pictures of her yet — videos are worse. I’ve wondered why, and I think there’s a secret here.

There’s a backlog of photos on my computer from Jaya’s last weeks that I can’t bear to look at. I can’t bring myself to parse new images of Jaya, even after spending hours carefully assembling the familiar photos we used for her funeral and slideshows and eulogy and obituary and everything other goddamn thing. I’m too weak. I’m furious at myself. I feel like I’m failing her. But I can’t look at them, and I’m so sorry. What am I even scared of? I think I’m afraid of what I’m going to feel when I run out of new, unexamined pictures of her to look at, knowing that each time I process a set of photos, I am one step closer to losing her forever — again.

Forced myself to choose a new picture for this writing — Jaya saucer overhead, two days before she left us

My usual ambitious summer plans to experiment and explore photographically got drowned out by depression, hopelessness, and a desire to keep my family close. I still work hard at my shelter photography efforts and will do any favour for friends or old pets (I appreciate the importance of having photos to remember more than ever), but anything just for me fell away.

Irrationally, I now only use one memory card. When she was here, she went on a long family trip with Jaya and Navin, and I filled up all my cards with family pictures the whole way through. The pictures are on my computer and backed up, but I can’t bring myself to erase photographs of Jaya to free up more memory cards. Almost everything about her has been ripped from our arms and hearts — why voluntarily lose more?


We live in an emotional lead vest. We are both back at work, and we’re often “normal”, but we are hiding the truth: normal now takes a lot of effort. Not giving in to our feelings, keeping our guard up, navigating through direct and indirect triggers, pushing down memories which come up at the wrong times, and suppressing the irrational guilt over laughing while Jaya is dead — all of this takes a lot of work. We don’t look much different than we did before, so it’s a quiet burden to carry. But we pay an invisible emotional tax, life’s other great certainty, alongside death.

There’s a ceiling on our capacity for happiness. Curled up on a crowded couch for Sunday morning cartoons, Navin, Lesley, Sprocket and I barely fit. But as happy and squished as we were, we would have made room for one more — we know something important is missing. She was so little and light, but left us with an impossibly heavy burden to bear.

It took a lot of effort in the days after losing Jaya to figure out how to feel about the world, about how to cope with the anger, about how to live with the grief, and how to find a way to move forward, pressured by the knowledge that we only have one shot at life — as delicate and brief as it is — to figure out how to chase the sunlight and live happily again.

Almost the entire crew crowded onto a single-seater chair

Intermission: (from an interview with Stephen Fry)

Bryne: Suppose it’s all true, and you walk up to the pearly gates, and are confronted by God. What will Stephen Fry say to him, her, or it?
Fry: I’d say, bone cancer in children? What’s that about? How dare you? How dare you create a world to which there is such misery that is not our fault. It’s not right, it’s utterly, utterly evil. Why should I respect a capricious, mean-minded, stupid God who creates a world that is so full of injustice and pain. That’s what I would say.
Byrne: And you think you are going to get in, like that?
Fry: But I wouldn’t want to. I wouldn’t want to get in on his terms. They are wrong.

I gave up drinking any great amount; I never have more than a drink or two. It used to be about calories, but now it’s about control. “In vino veritas” — in wine, truth — and I’m scared of ever speaking the full truth of my feelings and about what this world did to us and took from Jaya. I’d rather not put my friends or drinking buddies through that. Diet soda pop can’t be that bad for me, right?

Sister act

Kudzu is a vine-growing plant, a member of the pea family, and is regarded as a noxious weed. It likes to grow on trees, but if left uncontrolled and unchecked, it will rapidly cover the tree entirely, killing it with heavy shading. Grief is kudzu, we are the tree. We’ll never escape it entirely. We have to respect it, and we have to work on it, and we ultimately have to control it, or it will finish us by blocking out the sunlight we need to live and thrive.

Here comes the sun

Dads in Hollywood movies make me feel guilty. How many stories have been told about fathers whose children were endangered? Men who fought villains, battled natural disasters, survived famine or war, through it all, and they kept the family together?

And when death came for my daughter, where was I? When it snuck into her crib and SIDS took her breath, why didn’t I protect her? Where so many succeeded, why I did I fail? My rational brain knows this is fool’s talk — but my emotional brain still gets a say. And it makes me hate myself, just a bit, just for a while.


I experience my grief through symbols — photos and videos have too much power over me right now:

She was cremated in a onesie with an acorn and the words “I will be mighty”. A copy of the image lives on my desk at work and makes me cry when I’m asked about it or when I think about it.

Lesley’s friend from high school made a painting of the flowers we gave away at her funeral for guests to plant, and they keep her urn company.

Jaya’s flowers, from C. Walker

The cremated remains of Jaya’s body are dwarfed by a stack of condolence cards much taller than her urn, at once a testament to the love and support we received for her, and the unfairness of her short time with us. Every day we’d open a few cards, and reach our emotional breaking point, our daily grief appointment.

Jaya’s urn, and countless condolences

Flowers and trees, and the hope they represent. Everyone who attended the funeral was able to grab purple pansies to plant, and many have (ours didn’t last the summer). Many have contributed to have trees planted in her name, many have planted trees and flowers in their parks and garden. We will have two trees planted in the parks which she attended most, and in where Navin spends most of his free time, so she can always be with us. Like the acorn on her onesie, a riverside oak and weeping willow, with granite reminders of Jaya who was tiny but mighty.

Navin was gifted her stuffed froggie, but the one from her crib — amply drooled upon — sits on our bedroom dresser, the first thing we see in the morning and the last thing we see at night.

Every trip past her urn and painting, every look at froggie, every time I’m caught staring at the print on my desk, I try and build up my tolerance to the accompanying grief and loss and despair and sadness.


On day 99, we got a letter from our insurance company. Our claim required additional information — the itemized bill from the funeral home we had provided had the line item “cremation” circled, and the accompanying letter requested additional detail.

Our reaction was unprintable. Bureaucracy is inhuman.


Sometimes, I listen to movie clips on my phone while running.

From Rocky Balboa:

Let me tell you something you already know. The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward.”

Rocky is speaking to his son. The monologue hits me like a battery of punches. “The world ain’t all sunshine and rainbows. It’s a mean and nasty place.”

I rewind, and mouth the words to myself. Rocky is speaking to Rohit. “I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it.”

I rewind, and mouth the words at myself. Rohit is speaking to Rohit. “You, or me, or nobody is gonna hit as hard as life.”

I rewind, and shout the words at myself. Rohit is yelling at Rohit. “But it ain’t about hard hard ya hit. It’s about how hard you can *get* hit, and keep moving forward. How much you can take, and keep moving forward.”

I catch myself, make sure nobody around me heard, and wipe away my tears, without missing a stride in my run.

Jaya, your daddy got up, and I’m going to keep moving forward for you and for your family, no matter how much it hurts.

Jaya didn’t get a lot of selfies, but we made them count

Lesley and I have never been this sad for this long. Day in, day out. My first thought every morning is to remember what we lost. There’s no solution, and no end. We’ve been given a grief sentence, not a life sentence or death sentence. We’ve been condemned to miss Jaya every day for the rest of our lives. And barring further tragedy — please, spare us for now — we already know what we’ll be saddest about when our time comes, when our lives flash before our eyes.

Maybe we’ll feel *as much pain* again, but we’ll never feel anything worse. Forget Hell. Fuck Hell. We lived through Hell. And we’re still here.

There is no scriptural or supernatural evil that can conceive worse than what we felt holding our beautiful Jaya’s body in the back of the ambulance, singing a song for what remained of our child from just a nap ago.

And though this cruel world stole our daughter’s life, we won’t let it strip away our love, our hope, our humour, or our heart. My trust in the abstract ways of the universe are diminished, but I make up for it with a surprising — even and especially to me — resilience of hope. I don’t fully understand it, but I’m glad it’s there, and glad to have Navin to prove me wrong when it feels like laughter is lost. A contributing factor probably lies in a life long love of laughter, whether it’s being funny for others or pursuing our love of comedy. Bill Watterson had a theory about humor as a coping mechanism for absurdity that I’ve never been able to forget, especially recently.

I know that laughter is the heartbeat of my hope, and that the best sign we’ll be able to move forward without Jaya, but with her love in our life. Knowing that we laugh and make each other laugh every single day. And so we refuse to relinquish hope for a better tomorrow (how could it be any worse than a hundred yesterdays ago?), and we chase the light.

As Winston Churchill said, “do your worst; we’ll do our best”.

We miss you so much, Jaya.

I always end on this, simply because we love her so much

PS:

Jaya’s full story is linked below. And thanks from the bottom of my heart for reading about my little girl Jaya, because I don’t know what else I can do for her as her dad but write about her when it hurts to miss her so much.

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