I want to blog because I did not yesterday, and now I remember none of it. DOH!
This morning I played thinking games, working old formulas and playing in math books to wake my brain up. I took a good nap, and felt very alert when I woke up. So I think that was all very good.
The downside of becoming more alert is that you become more aware of how much you cannot do, and that leaves me frustrated and impatient.
I did step out into the sunshine, and feeling the sun on my skin did make everything better. What a miraculous feeling we take for granted, what a gift of life in such a simple moment.
I am walking better and my motor skills are better today, but the biggest breakthrough is that I am finally starting to make friends with the horrific noise in my head since surgery. It is an awful static, and it reminds me why some people go crazy after this surgery, and why so many people quit on their cochlear implants before ever getting to the phase of learning sound. It is horrible.
It is a loud static, screaming at you, roaring at you, and you cannot turn it off or run away from it.
As I was laying there, I was thinking about what the doctor said about it being the sound of “brain noise”, which hearing people learn to tune out when they are babies. I am hearing it now because of the electrodes in my head, and the brain swelling is making it worse.
But I realized that if it was a natural sound, and not the mechanical monster it seemed, then it must have meaning to it.
And so for the last three days, I have tried hard to tune into it instead of wanting to claw my way out of my own skull. I wondered if I could tune in well enough, what sound – like learning to hear with my processor – what MEANING could I find in that awful static, how could I de-code it, so that the sound could be ignored or tuned out or familiar – even comforting.
So I began to listen.
And finally, the breakthrough was that I realized part of what I could hear in the static was my own heartbeat.
This was good and bad – at first it was hard because then the static had a rhythm, and that was almost more torturous than the constant static. But then as I let myself breathe to the rhythm of my own heart beat, I found that my pain lessened and I slept better and I was able to focus more.
But still there was a painful sound in the static I could not identify – not until I realized it was like one of the beeps at the audiologist office, when I get the electrodes tested or a new mapping done. So I knew it had to be related to my implant, and not one of my body sounds exactly, but somehow connected to an electrode issue. So I kept listening, and I realized it was the same sound I hear in my left implant (still) when I am too tired or do too much – it is the beeping of one electrode or another (meaning different tones, high or low), but to the beat of my own pulse… faster if I am upset or doing too much, or a slow alert beep if I am too tired or exhausted. I realized then the reason I did not like this beep was because it was too connected to my pain level. So when I hurt more, that beep was louder and more persistent, beating out the pulse of my pain.
And so it irritated me, and it annoyed me, and it was like poking a stick at me where I already hurt.
It was just uncomfortable.
But that was two sounds within the static that I had found – my heartbeat, and my pulse. Related, but not the same, and completely different sounds within the static. The heartbeat sound is like the inside heartbeat sound, like on an ultrasound. The pulse is the mechanical beep of the electrode.
Still behind it was static.
And so I kept listening.
Then I began to cry, for because in my pain and my just-this-side-of-a-fever, I had an experience where the static seemed to turn to song. It was as if the pulse beep became the tick of a metronome, and the heartbeat sound became the rhythm and strings section of an orchestra.
This is what happens when you go to the symphony just before brain surgery.
But it was amazing, and beautiful, and made me cry – not weep, because weeping would have hurt.
But then, it got better – it was as if this simple march-rhythm, the constant, steady beat of the pulse and the heartbeat sound – it led me to realize that the static was a song indeed, and this is what I heard:
It was as if a choir of angels were singing to me through the static, specifically mens voices and then female voices, and then all of them together – and it was if it was this very song, except all the words were changed, as if it were a prayer to me.
I mean, not a prayer TO me, but like a blessing, where it was sung to me and the words were for me.
It was very sacred and special and words not for blogging. But it was the most amazing experience, even if it was some combination of spiritual-ness-meets-brain-surgery-meets-symphony-ness. Except I think it was more, of course, but it was amazing.
And since then, the static sound has not haunted me.
I still do not like the beeps when they come, but the heartbeat reminds me I am alive, and it is comforting. It lulls me to sleep in my womb of blankets, and it comforts me when the pain is especially difficult.
But the static? I now know the static is song, and so I wait for the words to come.
It makes me less afraid to take off my processor at naptime or bedtime.
It makes me calm and comforted instead of panic-ed or afraid or dreading the moment I have to remove it.
It makes the loud world in my head become a soft place of prayer again, as it was before the first surgery.
It is relief.
And yet, when I add the other processor on – the first one, on the left – when I put it back on, the static noise dies away. It as is if when the world invades or distracts, then it is too impossible to hear the songs of angels. And yet, the angels are not far, and still meaning comes to me when my processor hears sounds.
“They” thought I might lose my progress on the left side when I had surgery on the right. They thought I might lose my ability to process sound, and my ability to speak. They thought I might have to start all over after surgery.
I still might, after they add the second processor on the right. We will see.
But for now, on this day, I have lost nothing. I still can speak. In fact, I actually can hear myself speak better than I could before, and I don’t know yet why that is or how to explain it. Also, I can still hear fairly well when I listen with my processor, though some soft sounds are hard to pick up because of the static. But mostly, mostly it is fine.
I have not really watched tv or listened to music much since surgery. I tried a couple of times, and a couple of times friends were here who did. But the static had been my enemy then, like pre-baptism, when I thought it static instead of angel choirs, and so nothing made sense. I thought maybe I could still understand voices but had lost music.
Today, since my static breakthrough, I was able to go to my car (my car is where I can hear best, just because I get to sit in a stereo system), and I was able to listen.
Again, I would have wept if it had not been too painful to do so.
We listened to the entire performance of Mozart’s Piano Concert No 24 in C Minor, and it was amazing.
Here is a clip from the 2nd movement:
It was powerful to me, and it moved me. It felt as warm as the sunshine did on my face.
I was glad I to be alive.
And I could hear.
I really could! I could hear the swell of the notes, the individual notes, some cords, the piano pieces specifically – which did make the pulse-beeps on th
e right go away, and sometimes some other instruments even though I could not yet tell which was what or which. But it was lovely.
I especially love being able to hear each note – each note is such a miracle to me, and each one has its own color and life to it, as if I could sit in my car and listen, and without my body leaving that space, my spirit could waltz past a thousand individual flowers, each that smell uniquely and have their own shape and texture, yet all together reaching high to wave at the clouds passing by.
It was amazing.
This is the miracle of sound, and this is why I am fighting through one more surgery.
Because it is worth it.
The static-song in my head has changed from “O Come All Ye Faithful” to “Joyful, Joyful”, but again with its own Emily words, and I sit and listen and ponder in my dreams which words are poems I write, and which are angel blessings sung to me so that I might breathe another day.