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The Brain Diaries: "Her Voice"

Sometimes I feel like a red hot balloon. When that happens, I either write, or I clean. I don't apologize for either.

Since my pal Eric found this blog for me 11 years ago, it's brought me salvation and the text in my head has found a home. And recently, since my wife was diagnosed with a brain tumor and had brain surgery almost three weeks ago, and it's summer and I have a reprieve from University Life, my inner being has been poking me in the face, night after night. I wake up with text in me. I sweat in verse. I can't listen to music without needing to speak through it...about me. So thank God for this thing. My corner for my spirit.

And through this ordeal I got permission to share it with the Universe, from my wife. Chrisanne is a very private woman. She doesn't want the world knowing what's happening to her. The people she loves and who love her know what's going on, and she's good with just that. No more. For me...I not only need everyone to hear me, I need everyone to pay attention. To me. A lot.

I have stuff I work on.

So although this thing that's happening isn't happening to me...I mean, it's not My brain that's bandaged up, that's having trouble energizing, that's bruised and battered and healing and exhausted. That's not me. That's not my journey. Mine is worrying and the holding and the raging at the doctors and the gratefulness of the surgeons, and the constant state of wonder and total confusion that sits between what's real and what I picture in my head. The horrors I believe might happen are nothing compared to the horrors of what she's actually living. And for a moment, my wife wrote down what's true for her and what's going on, and I asked if I could print it out and paste it here in my little corner.

She was generous, and said Yes.

So I did.

These is Chrisanne's text...






"Friday is the day the stiches come out. It was supposed to be last Friday, but I started leaking and had to go to the ER and get new stiches.

So, with that in mind, I wanted to share some thoughts, memories, etc. of these past couple of weeks.

This was never life threating (well, maybe for 5 minutes) to me. But it has been life changing. Benign is a kind word. I can only imagine how the word malignant would change me and for those of you who know that first hand, I am in humble awe.

I go forward now. I mean to live by a couple of catch phrases. Never put off tomorrow what you need and should do today and Life is Important - live it that way.

Impressions and memories since the surgery:

Lysa Fox. When I got in the ICU (directly after surgery), Tom, Allen, Alex and Lysa were there waiting. I did the last scene from Wizard of Oz (and you were there, and you were there…) and then said to Lysa “Oh honey why are you still here? You need to be on the road to Montana.” She replied “it’s okay. I’ll get there in plenty of time”. Here’s the thing folks. Lysa had delayed driving long enough to see me into surgery. When I came out, she was on the road to Montana. But her spirit was there and talking with me and comforting me. Thank you my dearest.

Also in ICU – waking up for about 1 minute and watching my wife curled up in a hospital chair sleeping.

The hospital room was so very quiet. I’ve been hearing a hissing sound out of my right ear for the past 4-5 years. Since the surgery, no hiss. I love the quiet.

The careful, professional, caring presence of the nurses and staff that took care of me. My arms may be black and blue, but I never felt any pain or discomfort from any of them.

Alex remembering everything we needed for the hospital stay. She never left me.

Waking up and Allen sitting there reading. I think we talked a little bit and then I went back to sleep.

LEG MASSAGERS. Okay, if you have to go to the hospital, you must insist you have these always. They are used to massage your calves so that you don’t get blood clots and have a heart attack or stroke. But they are the SPA of the hospital. Day and night they massaged my legs. I begged to have a pair come home with me, but to no avail. I’m still a little bitter.

Throwing up on the physical therapist. The first time I saw her, we worked on sitting up. Which I did fine. Then I tried standing up and as she turned to get the walker, I threw up on her. She came back the next day!

My mom coming right from the airport to the hospital. She arrived on Thursday and I was released the same day. It was something joyful and wonderful.

Getting home. Our apartment is on the 3rd floor, no elevator. I walked up those stairs, Alex and Mom on either side or in back of me. We did it together.

Tuesday. A couple of things. As Alex was out getting the drugs, Mom read to me. I will never forget the sound of her voice. Also, I will never forget what PROUD means. It is not a good thing to be PROUD if it is taking the place of listening to those who know more or love you. Tuesday was also life changing.

Listening to Mom and Alex laughing at some TV show. Through our bedroom window I can hear into the TV Room. I just listened to the 2 of them and smiled myself back to sleep.

I can’t taste anything on the right side of my tongue. In fact, taste is something that is coming back very slowly. Plus, the right side of my body is weak. So, my concentration is on chewing my food and not the inside of my mouth, keeping my right eye lubricated (my eyelid doesn’t fully shut yet) and scrunching my face up to work the muscles in it. It’s the little things in life…

I love you all."

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