Anniversary

One year ago today I found myself with a broken foot.

On this one year anniversary, I went to the neurologist.

We talked for a few minutes about how life is so much better now, I am back to being myself and I am not taking any meds and I am free.  Free as a bird.  I said, One thing I know for sure, is that I learned a lot from all this, and I have no regrets.

And then she reinstated my driving priveleges.

I can drive! But. I don’t have a car, so I’m just going to imagine driving.

I had one last pumpkin scone* to celebrate the most fabulous neurologist appointment ever.

Where to now?

*You can find out how to make your very own scone here.

 

Third Person Thursday

Before she started taking brain-altering drugs, to alter her brain, her brain would do a little something like this:

Her brain would start thinking thoughts….one thought per circle. The circles would swirl and rotate and beat against each other and vie for attention. Her husband put it into words best: the circles! the circles!

He could see when she was being absolutely beaten alive by the maniac circles between her ears and would declare: Too many circles!

She understood but didn’t at the same time. In many ways, she was the leader of the team of circles.  She would egg them on and poke at them and run through them like a two year old with bubbles.  She was their tornado-captain whirling and swirling them around.

She could think of 16 things at once until the medicine….then it was 1 thing at a time, if that. She was lucky if 1 circle would present itself and command some sort of brain power.

Over the past few months as she has weaned off her medicine that polarized and nearly obliterated the circles, the circle army has gathered together again.  One by one each circle of thought has re-entered the space that they occupied before.

Perhaps they are reluctant because their leader is the same person but a different version.  Perhaps the leader is really leading now, so the circles maintain more order.  Perhaps the circles did some growing up while they were gone; moved from juveniles to sophisticated young adults.  Whatever it is, the circles behave differently now.

The circles clump together and slowly, calmly move together in unison while one circle takes it’s turn in the foreground.  They are always moving, hovering, active, but only one gets the spotlight at a time.  She can focus.  She learned to focus while they were gone.  She can think about the background in a peaceful exuberant way, but the urgency is gone.  She knows she will get to the circles that are now patiently, dare she say, serenely waiting?  She feels a balance, a yin and yang amongst the tribe of circles.  They: She and the circles, have gathered back together and are playing on the same team.  A team that’s winning.

Breaking Free

Today marks the first day in over 2 years that I have not swallowed a brain pill.
I know why the caged bird sings. by Maya Angelou

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill for the caged bird
sings of freedom

The free bird thinks of another breeze
and the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom.

I have been set free from my Keppra Kage. It’s been 6 weeks weaning off of what I now consider to be debilitating drugs.

As part of my new start to life, I got the med tag on my bracelet replaced with a birdcage charm.  It serves as a reminder to me of how I am free now and I need to take full advantage of that. The bird inside swings.

It’s also fitting because KAGE is my blog name. It’s my initials with an e at the end to change the pronunciation from KAG (rhymes with BAG) to Kage (like cage). Writing as Kage throughout this ordeal has meant the world to me. My readers have given me such amazing support. Thank you.

Keppra has been my cage for 2 years. I never knew just how imprisoned I was, until I gradually separated myself from it. Words simply cannot express how great it feels to be rid of it.  To quote Samwise Gamgee from Lord of the Rings: “Then let us be rid of it, once and for all….”

Every cell in my body hopes for this….once and for all….please.

Third Person Thursday

The past few weeks have not been without a few moments of brainy break-throughs.  She always struggles to describe what exactly that is:

She tries:

The feeling you get when you land funny in an elevator
white noise that you can’t hear
behind the eyes
not pain
irritation
cloudy thought
interruption of the blending of the senses
sensation that she needs to close her eyes and it will go away
“meningitisy” is what she used to call it before she was diagnosed with a seizure disorder

She has a little extra pill that she can pop to treat the symptoms. It’s working. She would rather take one of these as needed to calm the symptoms and in turn calm her down and hopefully calm down her brain’s possible desire to reboot (seizure), then stay on the AED’s…and here’s why:

She’s happy!

She’s energetic!

She has a bounce in her step!

She’s not walking against the ocean water anymore!

She can rise easily out of her bed!

She is feeling like herself again!

She asks:
Hi self! It’s been a few years….how’ve you been buried under those chemicals?

The extra buzzy braininess is irritating, and a few facial twitches have resurfaced, but she’s pulling the tools out of her emotional tool belt and addressing her anxiety and emotions. She’s talking herself through it, popping the tiny dissolvey pill a few times a week, and she reminds herself that if she keeps practicing, her twitches and buzzes might disappear. She’d rather have to address a situation like this a few times a week and be happy and energetic than be paralyzed by the drugs with the black label and the long list of side effects that simply, absolutely, unequivocally suck.

First Person Sunday: My Story

I talk about “my story” a lot.  ”My story” has different parts to it, sometimes one part is all there is, sometimes all the parts make the story, it just sort of depends on what’s going on in my life.  The past few years since I have literally been smacked upside the head to pay attention, I have done a lot of studying and searching.  I have learned from Byron Katie and Eckhart Tolle that I should shed “my story”, eliminate it from the equation completely.

Byron’s website’s tagline: “Who would you be without your story?” is quite a question.

Here is an excerpt from an interview with Eckhart Tolle:

“We can see, for example, what’s happening in the middle East with the eternal insane conflict between Israel and Palestine. We can see how each faction is totally convinced that their mental position is the correct one. Each faction sees itself as the victim of the other. There was a writer I read last year who said each side cannot recognize any narrative other than their own; that’s also true. Narrative means the story through which you interpret reality.

People have collective stories which are mental perspectives and mental positions. Of course, when they explain it to you, it sounds absolutely right. Then you go to the other story, and they explain it to you, and that sounds absolutely right. Both are so entrenched in their narrative, their mental positions and their identifications with mental positions that they cannot see anything else. That really symbolizes the very thing that lies at the core of human dysfunction.”

As much as I believe what these two people are dedicating their life’s work to, is right and true, and as much as I want to be who I am without my story, I am who I am today because of that story. I share the story on the blog and in conversation, in part because I make new discoveries each time I do.  I also feel I am giving parts of it away, thus diffusing it’s power, making it less of a mass that is following along with me, sometimes crowding me into submission.

I found myself telling parts of my story on a roadtrip this past weekend.  As I was talking I made a really important realization*. Someone asked me why I wanted to go off my seizure medicine.  The answer did not immediately roll off my tongue. It’s like it had disappeared.  I was confused for a moment and then I remembered a part of my story:

I was trying to get pregnant, and one day I woke up with my head bashed in, and I was put on medicine that increases the chance of birth defects and I went from the mid-wife natural childbirth girl who was gonna do it again in 2008, to the high-risk black-label drugs brain girl.  In an instant the future changed.  And I didn’t realize this until recently, but I began the stages of grief for what SHOULD have been, with a new baby topping the list.  And “getting off the meds” was so that I could finally have that baby that I had been trying for.  Every time I went to my appointment I asked my doctor about pregnancy and how long until I could get off the medicine.

I struggled through watching friends and relatives become pregnant and have babies and for the first time I felt a small portion of what other women feel who cannot have what they so want: a new baby.  You know those women who proclaim: “I’m done” when the topic of more children comes up? Well, that topic seemed to come up a LOT around me and I never said that.  The answer was always a sorrow-filled “we’ll see..”, “I don’t know.”, & “Well, I’ve been having these health problems and…”

At times I was riddled and completely drowned in thoughts of a baby.  I would bring it up to my husband and he would feel so cornered by talking about something that could not even be at the time. I would talk about it seriously, jokingly, hypothetically, I often picked it as my “falling-asleep topic”. At times I was completely obsessed with it.  I have names in my back pocket all ready to go.

A few months ago my anxiety got extremely high and I went to visit my therapist thinking we would discuss the new york city school ridiculousness and it’s affect on my family.  I left having discovered I was still, almost 2 years laster, grieving the loss of the baby that never was.

I took that in for several weeks and explored the stages of grief and realized I was in stage 4: Extreme Sadness.  Knowing that, and being validated for my feelings and stages made the sadness slowly dissolve into Stage 5: Acceptance.

The realization* I made in the car when asked: Why do you want to go off the meds? was that my answer had completely changed.  Even 3 months ago, the answer was: I do not want to have a baby on the medicine, and so I need to get off so that I can try to get pregnant.  And this weekend the answer was: Ummmm….hmmm…let me think for a second, well, because I don’t want to be on meds that I don’t need to be on, and endure the side effects (sleepiness, muscle weakness, etc.), I want to feel like myself again.

I realized in that moment that baby #3 who never was, will never be.  That baby’s chapter was opened towards the end of 2007, and was tried for, prayed about, dreamed of and taken away over and over again until March 27, 2010, when the chapter closed, through the telling of my story.

I realized that if I successfully get off this medicine and there is a baby in my future, that’s baby #4.