Rage Against the Dying of the Light

Do not go gentle into that good night, 
Old age should burn and rave at close of day; 
Rage, rage against the dying of the light.  

-Dylan Thomas

She sifts into my thoughts at work, between classes. She drifts into my heart on my bicycle rides. She floats into my mind, surfing on the crest of car radio music. She sits besides words in the book I'm reading, drawing me down from the exploits and escape of a fun, fictional heroine. 

My worries for my cousin and her children and my own children permeate my dreams. 

There exist degrees of suffering, from shifting in one's seat during an interminable virtual meeting, to stubbing one's elbow into the wall so that the pain radiates out for the next ten minutes, to trying to cope with the concept that a loved friend and family member is hopelessly ill.

My cousin is ill. And I, who choose to be the keeper of the hope for my family, don't know where to look for it anymore. Her cancer is evil, it's a behemoth, it has fed upon her body and mocked us all with its power over life, death and suffering. 

I'm not here today to toll on about my grief, although it curls up in my chest like a bear burrowing in for winter. I'm not writing about PANS and PANDAS and Lyme, although I could--oh, could I--as these are never beyond my daily thoughts; they pervade our lives now, as they have for years.

I truly don't want to make you sob. But I want to ask, no, demand: WHY? 

Why take a wonderful person, a mom-wife-teacher-sister-daughter-cousin-a first friend-a vibrant, extroverted, fun-loving, people-loving woman--one who JUST found she was a twin, found her twin, loves her twin sister--and thrust upon her, of all things, pancreatic cancer? 

On a selfish level, why hurt me through my cousin? Leave her out of this. I've had enough angst and so has she. I do wonder why pain keeps coming and coming, much as the earth revolves around the sun.

I bicycle. I write. I breathe and contemplate and try to still the fears. Because I just do not understand a world that involves so much hurt.

As a parent of kids who have dealt with illness, I have shed enough tears, known enough sorrow, to last lifetimes. Yet I am constantly reminded (by myself, of course) of the Holocaust. Of American Slavery. Of people who never had happy endings, people who died while in bondage. 

We all get it, ok? There are no guarantees. This is no prettied-up picture book, nor young adult fantasy novel we're living in; this is cold, steel drama that robs us of those we deem the most important.

Make your hero suffer, they tell us writers. So you can, first of all, have a story, an arc, and second of all, see how they react, how they grow. It's about the internal journey as well as the main plot. 

Let it ring it from the rooftops: WE ARE GROWING! WATCH US SHED OUR SKINS AND BECOME! Now, give us our happily ever after!

If this were a book, or a TV show--the kind I like to watch, not the kind my husband finds fascinating (i.e. G.O.T.), my kids would be better already.

If this were my kind of book, my cousin, who underwent chemo while continuing to teach, who, with her twin sister, is writing a memoir of their incredible story, would find a way to save herself or be saved, due to the fact that she has fought fiercely and furiously for a year and a half.

We don't know if there will be saving. For my cousin.

I continue to work on saving my kids. But as bad as Lyme and PANDAS are, as little as we know about treating these medical infections, as deadly as they can be, in my life, at least, they move just a little down the priority ladder for today.

It's past midnight as I write this. Part of me is willing to run into the screaming cold rain and cry out to the clouds. Part of me wants to curl up with my dog, who doesn't smell overmuch and let him lick my tears.

I shared with my class the other day, in a quiet, few-words way, that I worried about my cherished cousin, my childhood friend. One student then told us that his friend's mom has stage 4 cancer. A girl said that her dog just died but she hadn't shared it till that day. And so on. I had debated telling my students anything at all, and I never talk about PANDAS and Lyme with them, but by exposing my sadness over my cousin's fight, I opened up space in the room for all to be honest and receive verbal caring.

The next day, a student brought me a hand-made card for my cousin.

I bicycle. I write. I wake up and think about my cousin, my kids, my cousin again, my kids. I text them all. I post a funny meme to social media. I post to PANSLife Facebook. And I imagine my cousin in her home, with her husband taking care of her, her sons by her side, the oxygen tank. 

What is the purpose of life when it brings suffering to those who love so much? Why do so many bad things happen? Why do we know so little about the brain and the immune system?

As a high school senior, we read Waiting for Godot and learned about existentialism. I was shy, emotionally and physically young and also silently suffering as my parents fought nightly, preparing for divorce. But until I was told I was alone, I had not realized it. The sudden awareness of being solo in the world sent me flying out of the arena, into the sky, untethered, unable to ever find my way back.

Suddenly, I felt abandoned. By my family (which was to happen), by Gd.

But not by people. If there are angels, they come to us through other people. And my cousin is one of these people who bring love and positively affect the lives of others.

Many years ago, pre-Lyme, pre-kids, I read Rabbi Harold S. Kushner's book, When Bad Things Happen to Good People. He writes:

“We can't pray that Gd make our lives free of problems; this won't happen, and it is probably just as well. We can't ask Him to make us and those we love immune to diseases, because He can't do that. We can't ask Him to weave a magic spell around us so that bad things will only happen to other people, and never to us. People who pray for miracles usually don't get miracles, any more than children who pray for bicycles, good grades, or good boyfriends get them as a result of praying. But people who pray for courage, for strength to bear the unbearable, for the grace to remember what they have left instead of they have lost, very often find their prayer answered.” 

Quite frankly, this doesn't cut it for me right now. I'm raging inside.

For those interested, see: Twins reunite after watching CNN film ‘Three Identical Strangers’