Sunday morning the day of our flight. It’s been a crazy two weeks of getting to this point and I’m really ready to be back in New York and to see the surgeon to move forward with surgery and post-surgical treatment.
Also cannot wait to see many of the people I have missed who have been seeing me through this from NYC. This from Miguel: “Wow. You have no idea the relief (of) you coming back home. It has been so hard to miss you so much. I have tried to give you a little space. I love you!’
In the past couple of days I’ve been having some wonderful if hard talks with Antonio and he rightfully acknowledged that all of the updates that I’ve been sending out have been filled with my perpetual optimism and seeing the glass half-full – and that is all real. But it’s also important to knowledge the glass half empty part. I love that Antonio pushes me to say what I am thinking and feeling. It’s so needed. I’ve had so many ups and downs and that while mostly I’ve written about the upsides, the downside has been there, sometimes feeling like I am falling into a black hole. I can go from smiling and taking in all of the love you all send and find my way back to the black hole – and all of that can be within about five minutes and then I can flip again. If you saw the movie Inside Out(http://movies.disney.com/inside-out) about the 11-year-old girl, Riley, who was trying to balance her major emotions, she went back-and-forth within moments among anger, fear, disgust, sadness and joy. And that has been me over the past couple of weeks. The fear may be pretty obvious: the idea of somebody cutting open my skull and messing around in my brain is pretty frightening. Even knowing that I have one of the best brain surgeons in New York does not take that fear away. What happens if in spite of the two lesions being superficial, he goes just a little bit too deep and then I wind up losing my ability to love or feel in the same way that I have been loving or feeling emotion to the same degree that I have until now. (I know this is highly unlikely, but the fear is there.) In the film Riley’s brain is controlled by five busy, contentious emotions: Each one has a necessary role to play, and they all carry out their duties in Riley’s neurological command center with the bickering control center. Maybe deep inside I’m an 11-year old girl!
Good news – in the middle of the night, I woke up with a deep feeling of pure love for Antonio, after too many days of loving him more for all that he has been doing to support me rather than love just for love! It was a beautiful feeling!
The fear: after surgery, will this mean that when I go to a movie I will no longer cry? Anybody who’s ever gone to a movie with me, whether it has been a funny movie, a sad movie or any other kind, knows that my tendency is to cry almost a moment the credits come on. I hope that will not change. And while rationally I don’t think that will change, the fear is nevertheless there.
Yesterday evening, we went to see Room a potent film in its ability to express the wonder and confusion of 5-year old Jack to escape to see things he’d only experienced through a screen. Room makes that disorientation so visceral to viewers, communicating the angst and the elation of breaking free. I am feeling a prisoner in myroom – my brain – and can’t wait to break out of this prison. I cried like crazy yesterday during the film and then laughed. Antonio thought I was crazy! I am right now!!!
On the sadness side, I still wonder why this is happening to me even if I know there’s no real reason that can be found in something that I did. It makes me sad that in spite of my healthy lifestyle, being surrounded by love and trying to do good in the world, something like this can still happen.
When it comes to anger, that is all mixed-up in the fear and sadness.
Joy has also been very high up on the emotions that’ve been running around in my head. I’ve had great joy in all of the love and support that I’ve been getting from everyone to help me here in Madrid – Antonio and friends plus the medical and support staff – as well as everything that is being done in New York to make sure that all is ready when I get back later tonight
One last metaphor – went to see the Miro exhibit on Friday. Amazing and seeing how Miro deconstructed painting and sculpture was one more symbol for what my head is doing with my body. Deconstructing it and soon, reconstruction begins!
Could be titled “My Brain DECONSTRUCTED” by Joan Miro:
Landed at JFK after easy 8 hour flight. Slept almost the entire flight. Can’t wait to deplane and get home.
Antonio by my side.