Seven Days

VII

“It is true that every day has its own evil, and its good too.
But how difficult must life be, especially farther on
when the evil of each day increases as far as worldly things go,
if it is not strengthened and comforted by faith.”

—Vincent Van Gogh


Seven days. I swore to myself at the beginning of this journal to exclude politics, except when relating a story. I now break that vow, but only with a tactful and inoffensive comment or two. Hey GOP: We told you at the RNC in NYC what would happen if you didn’t grow some ethics. Okay Democrats, we just threw a bunch of bullying, oil-fed pigs out.
You got your second chance. Now Do Something.

Oh, and, hey Rummy. Screw you. Do you know what happens to guys like you in prison? Yeah? Good. So does the International Criminal Court. So, good luck with that whole War Crimes thing…
[If you object to my opinions, just relax…take a deep breath…and click the comment link. Go nuts.]

I spent a good chunk of the day spinning my wheels; in a pain/med haze, trying to telephonically weave through a labyrinth of the Medical Industry protocols…pre-op tests need to be done that haven’t been done. Much of this back and forth, doctor to doctor, blathering had to be done from bed.
So much of the minutiae involved in major surgery is left in the patient’s hands, in fact is specifically made the patient’s responsibility. It is hard to give up any shred of what remains of my independence. Even though good people [it should be noted here, especially my guardian angels: Mom, Gayle and Jenna] are willing to help, it is hard to ask for that help. At first I thought I was clinging to my life-long need for independence; then I realized it is more about the blows that such a wholesale loss of control over the simplest things have done to my sense of self-worth.
People who struggle with illness don't isolate on purpose, it sneaks up and yanks us into a dark alley. We fight to maintain the illusion of who we were before, not who we are now.
This is how things get twisted up and people who love each other get frustrated when dealing with the bureaucracy of disease.

It is frightening to catch glimpses of the cognitive changes in me, the fraying apart of my wits, through the reactions of people who love me and know me well.

So much has been taken from me, in terms of my ability to break trail in my own life. To have the gift of freedom of movement, and freedom from pain, that I used to enjoy.
Yet In the same breath I must admit that I have gained a precious, invaluable new awareness as a result of this personal disaster.

Pre-Chiari, I lived in my own world, pursuing life based on what moved my heart: poet, civil-disobedience activist, stagehand, dishwasher…etc. I love my family, but I was emotionally distant from them, both branches. Not on purpose, just through a habit of self-involvement, that I never realized was occurring. Of course, they did notice, and feelings were hurt all around. Meanwhile, I just thought I was living my life, quixotically driving after the things I am passionate about. When I thought of this distance I always told myself that ‘they understand how I am’ or ‘they know I love them and…’ But I see now the thin excuse, the sour rationalization, this was. And also a lousy way to treat people who care about me.
At last I understand what it means to step up and be a real human being.

When I came home my family embraced me; in fact, long before I came home Mom was keeping me out of poverty. They moved Heaven and Earth to get me into an apartment, even hooking me up with cable to whittle away difficult hours, they turned on the phone, listened to me whine...they did for me what I could not do for myself.
They worked hard to never let me feel, for a second, that I was alone in this. Gratitude is a poor word for what I feel, but it is the best we have, for now.
And just as important, I feel, is the awareness that I have gained:

There was never any distance between us, only the silence that I had created. Life rushes us along, and we think there is always time to make amends for the hurts we cause, that there will always be time to share the love we feel.
And then one day someone looks at you and says Brain Surgery

When it happened to me the first thing I realized was that I could never get the time back that I had frittered away, not one second. I thought of my family and friends, how I wanted to know them all better. I wanted time to make things right.
I am lucky enough to have been given that chance.
Seize your chance now, before someone says brain surgery to you, or something worse.

Would I have learned this crucial lesson without the Chiari forcing me to see it? I want to think that I would have matured, eventually, enough to recognize the priceless blessing I have been given in my family and friends.
And maybe I would have, but I know this truth:
The malformation of my brain
saved me from a malformation of my Spirit.

—End Transmission—
Dawn McKenzie