I don’t know anything, I never have.

I learn as I go, what feels right or wrong in my gut.

Tomorrow I am supposed to get the new CF drug – Orkambi.

My mail service pharmacy people called me last Wednesday and went down a list of questions.  I was recorded and it seemed as if I said “No” to anyone of the questions the order would had been thrown out.  I felt like I was in a virtual courtroom.

My doctor’s office had to test my blood to verify that I really do have cystic fibrosis.  A requirement by all of the insurance companies.

They asked if I was taking birth control, if I have liver tests recently, and a few other questions.  I passed.

The cost of this is medicine is outrageous, just under $21,500 for a one-month supply; my co-pay only $50.

Now the tough part – my hands start to shake – will this drug work? Can my body take it? 

The thing is, it is all more than that – the possibility of this was always so far out in the future, if it ever was to be.

It is like a unicorn appearing in your house.
Or Little Red Hood knocking at your door.
Or the mighty ruby red slippers.

It is the sky that never darkens,
The heart that never weakens,
Your eyes that are always open,
And the love that is never shaken.

It is the ever-hopeful wish that could be.

Cystic fibrosis is such a selfish, relentless being.  It truly is. But, then it gives so much –

Kindness at its center.  All arrows point from that.
Beyond love or friendship.

Just kindness.

I often say in my heart “Love and peace.” Love and peace bring forth kindness in everything and everyone. That is the only way I know how to live.

In the documentary film “I AM” Dacher Keltner asks –

“How do I bring out the good in you?”

It is essentially how we connect to all living things.

Never about taking, but giving.

This is the biggest thing in my life, thus far.

Love and Peace.

 
Citation:
Shadyac, Tom. “I AM”. 2010. http://www.iamthedoc.com/.