Whispers from The Joker

I decided to name Abdi’s tumor “The Joker”. Ironic? Yah, exactly. We made his acquaintance in October 2020.

Let’s recap...

40 DAYS AGO | ER physicians discovered a grapefruit-sized mass in Abdi’s chest

“I’m an agent of chaos…” –The Joker

29 DAYS AGO | Abdi received his formal cancer diagnosis - a primary mediastinal seminoma

“We stop looking for monsters under the bed when we realize they’re inside of us.” –The Joker

5 DAYS AGO | Abdi finished his first round of chemotherapy

“You can't sell dreams to someone who has walked through nightmares.” –The Joker

Abdi’s diagnosis and treatment has not been the slap in the face that I expected it to be. Instead, most days it’s Novocain. I have become numb, unfeeling, hollow. Everything is so unbearably unfair and uncertain. Between cancer and COVID-19, I am out of gas. I feel like a failure. The apparently unfeeling caregiver. The seemingly ungrateful charity case. A new, unfamiliar, subpar version of me who cannot live up to the expectation of what I should be - what I once was.

“Madness, as you know, is a lot like gravity, all it takes is a little push.” – The Joker

I know what some of you must be thinking… “This is depressing. Why is she sharing this?” I want to unburden myself from the mounting pressure I feel. Pressure to live up to my reputation as a joyful, energizing and positive person. Pressure to navigate this unwarranted, untimely obstacle like caregivers do on the Hallmark channel. The unwaveringly helpful and hopeful wife who gives the protagonist sage advice about believing in himself, always assuring him of his strength to beat this, never displaying, even for a moment, weakness or fear.

But this isn’t a movie where they treat cancer as a plot device for character development. People with life-threatening diseases aren’t hollow props. I am not a character designed to teach people about how precious life is, to pull at heartstrings, to leave viewers feeling inspired.

This is reality. These once heart-warming films are now painfully untruthful, failing to capture the primal instincts that take over when you witness the person you love most in the world stare death in the face. Failing to portray the earthly thoughts and feelings that accompany that...

“Is he going to die?”

“What is going to happen to me if he dies?”

“If he is gone, there will be nothing left for me here.”

When I emerge out of my protected state of numbness, I feel.

Tired

Mentally, physically, emotionally.

Sad

I feel robbed of many things - luxurious and simple joys - but most of all, time. My heart is heavy, and not just psychologically. It literally feels like a boulder is sitting on my chest, all the time.

“You don’t listen, do you? You just ask the same questions every week. ‘How’s your job?’ ‘Are you having any negative thoughts?’ All I have are negative thoughts.” –The Joker

Angry

I see friends chomping at the bit to be allowed back to their “normal” lives, knowing we won’t be able to join them. Jealousy and rage. I wish people would understand that their freedom does not mean freedom for all of us. In fact, for some of us, exercising your “freedom” has consequences.

“The real joke is your stubborn, bone deep conviction that somehow, somewhere, all of this makes sense! That’s what cracks me up each time!” –The Joker

Anxious

The lack of control and uncertainty this diagnosis has thrust upon us is exceptionally anxiety-inducing. To manage, movement has been my medicine; but even that has presented unintended consequences - including rapid, involuntary weight loss.

I understand, some outsiders looking in read these words and feel deeply uncomfortable. It’s not the “positive spin” you are used to hearing from me. It is the unprotected, explicit, cold hard truth. If you are a reader who feels uncomfortable, I am glad. Truly, I celebrate that you can’t relate, and therefore can’t understand. No one should have to go through this. I am glad you haven’t had to, and I hope you never will.

“Whatever doesn’t kill you simply makes you stranger.” –The Joker

I aim to normalize these demonized, rarely shared emotions.

If this resonates with you - cancer caregiver, cancer patient, COVID-19 impacted human, or other - hear this: you are not alone.

I will sit with you.

We fight on.

Laura