Joy

“….so I would recommend you consider taking full medical leave sooner.  If the Navelbine stops working, you could have less than six months.  It is your liver, after all.”

We’d started the appointment with my recount of her advice the last time we met, when I asked her if I was in the one year range.  I was considering taking medical leave in the Fall, but didn’t want to take it too soon.

She said I could very well die within a year, but that she wouldn’t bet money on it.

And she still stands by that.

She wouldn’t bet money on my not surviving a year.

But she knows statistically I could very well die within six months as well.  So I’m pretty certain she wouldn’t bet money on me not dying within six months either.

All bets are off.

 

“Time to shit or get off the pot.”

Interestingly, it’s my Dad’s voice I hear first.

I’ve been flirting and dancing with the idea of my death for over a year and a half now.

But I’ve definitely been avoiding the crappy work.

I’m a member of The People’s Memorial group, but I’ve not made funeral arrangements.

I have the name and number of a good, affordable lawyer, but I’ve not called to make an appointment for our will.

I have hundreds of photos of me with each of my kids, but I haven’t organized them and  sent off to be made into memory books.

I know how to find the names for my Human Resource representative, my life insurance and my social security agent, but I’ve not written them all done for my spouse.

There’s some shit to get done.

So just to be clear: I don’t plan on dying in six months.

I’ve got classes to teach and Hawaiian mountains to climb.  I’ve got dogs to train and children to nag.

But still.  There’s a responsibility that is invoked when a professional gives you advice based on a lot of science and experience.

And there it is.  That promise to be honest with our kids about any changes in my treatment, symptoms or prognosis.

There’s that.

Relativity July 1953 Woodcut 28.2x29.4cm
Relativity
July 1953
Woodcut
28.2×29.4cm

I’m trapped in this pyscho-emotional Escher puzzle where passages and doorways are simultaneously upside down and right side up.  Left turns right and over is under.

Grief turns terrifying in its confirmation of death.  Knowledge feels all powerful, as if by merely believing the possibility of a prognosis, I can make it so.

A short prognosis from a trusted oncologist turns into a ring of power and I sit at the edge of the volcano certain that if I can control these emotions and choose the right place in my heart to be, I can avert disaster.

 

My practitioners Reiki takes up a lot of that electric, thundering storm.  It leaves me with a bit of peace.

A place to share with my kids.

And when my 11-year old son starts sobbing in his bed, I can come to him with a quieter heart and mind.

I hold him.  I listen.

Sobs.

I hate my life!

Sobs.

But if I didn’t have my life I would never have you.  So I love my life.

Sobs.

This is so terrible.  It is so awful and there’s nothing I can do.

Sobs.

I just hope so desperately there’s someone out there.

Sobs.

I just hope there someone who can help us.

Sobs.

Because I can’t do anything.

Sobs.

It’s too soon.

Sobs.

I’m not ready.

Sobs.

I’m not ready to lose you.

Sobs.

I need ten years.

Sobs.

I need five years.  Five.  They can find a cure in five years.

..

Me too, I tell him.

Me too.

And when we’re done sobbing, he says he feels better.

And we talk.

We talk about hope.

About cures that have been discovered and treatments that keep people alive.

We talk about AIDS.

We talk about that feeling we both have always had that someone, something, somewhere is out there.   That presence of love we say is kind of like what some would call God.

Something bigger than us that cares.

We each have our own stories we share.

And we find joy.

 

 

 

 

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