Friday, February 19, 2010


I understand associations want to reach out.
They want to help others in a similar place.
They want others to feel less alone and prepared.
And most of the time, it really helps those who are experiencing some sort of tragedy.

On Saturday, the day after the accident, I received a huge canvas bag from the Brain Injury Association.
It had pens, notepad, snacks, some toiletries, a blanket, a camera, telephone card.
And the one thing that did not help me at all - hope.

There were pamphlets of what was going on in Roger's head.
Answering some frequently asked questions.
Describing brain injuries.
And describing how so many people had recovered.
People in car accidents. People who were young.
They told me how Roger was going to recover.
How it would be a very slow process.
How he would have to learn to talk again.
And walk again.
And he may be grumpy.
How he would be discouraged but I had to stay positive.
It warned me how it would be draining and exhausting for me as well.

But they did not talk about what really happen to me.
It did not warn me that Roger would die.
It did not talk to me about what to do when he died.

And guess what...
He did not survive.
He would never recover.
He never got to speak to me again.
He never got to walk around.
Or touch me.
Or hug me.
No, Roger died.

The notepad did come in handy.
To note all the people and business of death.
The camera is somewhere in a drawer.
And I deleted all the pictures of Roger lying in the hospital bed on my own camera.
And I still have the stupid bag.

I will probably have to throw it out when I find it again.
It makes me angry.
That bag was full of hope.
Full of dreams.
But not for Roger.
And definitely not for me.


Supa Dupa Fresh said...

I hear ya. That's why I've completely disengaged from cancer advocacy. No one in that group wants to know either, not any more than the civilians do.

You think cancer sucks? Meet death.

But I'm hoping we can do something about this. Things are changing....

I'm so sorry. I'm thinking of you.



Hello said...

I completely agree with you.

In my job, we advocate for the bereaved. We focus on life after death.

I understand why the patient advocacy organizations center their attention on hope. I'm sure it's what most people want/need at the time. But the question becomes, when do we start to look at the realistic option that they may not survive? And if they don't - what then? Who's there with a pamphlet then?

It's an emotional, yet political tight rope. I hope it changes some day.

Kim said...

The function of a shaman was to cure or heal ailments AND guide the souls of the dead. They could not compartmentalize the way we do in our culture because they were INTEGRATED into their community of practice. There was no avoiding the failures of practice. For all our advancements, we have lost so much. We have lost a shared community response. I am so sorry for this slap of grief. Blessings.

Christian Sinclair, MD said...

Supa Dupa Fresh passed this link on to me. Great post. Very simple yet powerful. As a palliative care doc, I am often surprised how little mention mortality gets in information given to patients. It doesn't have to doom and gloom, but some balance would be nice and help us all to be better prepared.