I still do not have an answer to – or even an appointment regarding – my continuing “brain shocks” that have plagued me for the past twelve days. The shocks vary in intensity and, to be fair, some days are not bad. The nice part (if there is one) is the absence of pain leading up to or following the shocks. The worst part is not the jolt itself but the location of the jolt. The brain is the part that senses pain and figures out how to compensate. If the brain itself is in pain, perspective is lost. (Note to self: is there a song in there? “My brain in pain ex-plains why I’m in-sane.”)
I dealt with serious hernia pain for six years and – though much worse and chronic – it was just that: pain. You can hit the rest of my body with blunt objects and I can take the pain. But something going wrong inside head, where I produce thoughts and dream up music, is unnerving.
The worst part is – though random – the shocks seem to occur when I am in more of a dream-state, when I am imagining things, when I am relaxing or when I am thinking abstractly. Last week, when MJ and I were off the grid, I had plenty of opportunities to relax and heal. Yet I was afraid to let go into complete mental rest (and justly so, if you read on). If I did this, I was more likely to take a major shock.
I can sense the big ones coming. My left ear rings loudly and the pitch makes an eerie downward glissando with an exponential crescendo until it explodes with a sudden electric jolt. It feels like a sadistic guard monitors me and uses a cattle prod to punish me for relaxing. Nights are okay, but during the day I must really keep on my toes. When I hugged MJ once, pausing for a moment to feel that simple sensation of oneness between people who love each other, my brain took a major zap. How bad is it when you fear putting your mind into that vulnerable state which allows you to feel love? For me, it is that bad.
Ten days ago I explained this to my neurosurgeon. He understood and referred me right away to whom he thought was the best neurologist in town.
I waited for my file to arrive at the neurologist’s office. They called my answering machine and I called theirs back. After more phone tag, I finally spoke to a person.
“How soon can I see the neurologist?” I asked.
“That doesn’t work for me. How about tomorrow? Is tomorrow good?”
“I’m not feeling the love here,” I said. (Maybe I didn’t say that?) I think I said, “I had a brain tumor taken out a few months ago and I’m suffering from some strange neurological attacks. You know, like, ‘ka-POW! I’s gonna blow ya head off. Ka-POW!’ Like that. The note from my neurosurgeon explains how serious this is. Are you certain the neurologist has seen my file and does not want to see me until July?”
“Let me get back to you,” the woman said. “I’ll do some checking and will find a time much sooner.”
“Great!” I said.
I never got called back.
In the meantime, friends in the medical field suggested other names for excellent neurologists. But I first need a referral, so I called my primary care physician. I explained everything to the woman answering the phone.
She was very understanding and said, “Your doctor is not in today but he can call you first thing in the morning. You can discuss this with him over the phone and he can make the referral right then.”
“Great!” I said. I added, “I can also be there in person first thing in the morning. Does he have an opening then?”
“Yes, if you want.”
I said, “It’s probably easier for me to be there in person to make sure he understands what is going on. I live close by. It’s very easy for me to be there.”
She said, “We could do it that way, but it’s just as easy if the doctor simply calls you first thing in morning about this. I’m making a detailed note for him. You’ll be called just before 8am and right after that we’ll have you in touch with the neurologist.”
I hung up the phone. It was 3pm, and I left the house to rehearse the Walton violin concerto with Midori. During the rehearsal my brain was shocked two or three times.
At 6:30pm MJ and I returned home in between the two rehearsals to feed Noah. My answering machine was blinking.
YOU HAVE ONE MESSAGE.
I pressed the play button.
A strange woman’s voice spoke into the machine. “Hello? I have a note here someone has left me saying . . . I think? . . . you want your doctor to . . . call you? We don’t usually do things this way and I would need to ask you some questions to clarify something before I can leave this note for him . . . Please call me back.”
I dialed the number.
A message played: “Thank you for calling. The office is closed. If this call is of a routine nature please call back during regular business hours. If this call is regarding a life-threatening emergency, please hang up and dial 911.”
I hung up the phone.
We left again to rehearse more of the Walton violin concerto with Midori. Four more shocks.
We came home at 10:30pm. No more messages.
This morning I woke up at 7:30am. At 7:45am the phone did not ring. At 8:00am the phone did not ring.
At 8:15am I dialed my primary care physician.
“Hello?” a new woman’s voice answered cheerily.
I began to explain and quickly deduced there was no note of any kind left anywhere. The person working yesterday was “filling in.” Yesterday was yesterday. Let’s start fresh today, shall we?
“So what is this concerning?” the new person asked.
I Explained. At. Length.
“Oh, then let me put you through to the voice mail.”
“DON’T!” I asked nicely. (Voice mail informs you to “please allow three days” for someone to get back to you.)
“Okay,” she said.
“Does my doctor have any openings today?”
“Can he call me? This is just for a referral. He specifically told me referrals can be done with a quick phone call between us.”
“Okay,” she said.
“So can he call me?”
“I’ll leave a note for his medical assistant to give to him to call you.”
This sounded eerily familiar, but it was as far as I was going to get.
And as of this writing, I have not received a call.
This wonderful post should not be on your blog. IT SHOULD BE PRINTED IN A NEWSPAPER SO THAT DOCTORS WOULD BE SHAMED INTO HELPING THEIR PATIENTS.