Chiari on Private Practice tonight

October 15, 2010

Hi All

Tonight Private Practice featured chiari malformation. I can't believe none of

us knew it was coming.

At first, I was so thrilled. They portrayed it so well...what we live everyday.

They showed an MRI, the grewsome pain we live with, even part of the

decompression surgery....and I was thrilled this was on primetime TV.

And then the emotional part came. The woman's husband said (while she was in

surgery) the part of her he fell in love with was gone...because of the pain. I

completely lost it. It's been 12 years for me...I thought I was at peace with

this...most days I really am at peace with it..but I am a wreck right now,

grieving what this pain has stolen from me.

I remember at about 2 1/2 years into this...before I was diagnosed...one of the

closest friends I had then, who truly loved me, said to me... " I don't know what

it is, but it's stolen the twinkle from your eyes. " At that moment, I

appreciated that at least he understood that this hidden, horrible creature had

taken some part of me that I couldn't control or get back...I loved him for

knowing me enough to notice while I was trying so hard to be brave and to

pretend I was still the same me. I felt so vulnerable in that moment.

And ten years has past since that night. Diagnosed, multiple surgeries and

years of coping and coming to terms with it...and one hour unexpectedly has me

grieving again.

I lost my career, my marriage, all financial stability, my stamina, some days my

will, and most of my old friends...and I've gained more insight and compassion

and strength than I ever imagined possible.

Most of us live every day with a pretend smile, pushing though, so we don't make

others uncomfortable. Some days, we have to just cry....because none of what we

live with is fair...because none of us deserve this...because no one should have

to live like this.

Tonight I cry...tomorrow I will be strong again...and I will get through this.

I will find the blessings everyday and realize what this pain has given me and

taught me...but tonight I will cry.

God bless

Love to you all

in Pittsburgh

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