Brain Blips: An Epilepsy Journey
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Learning about and Living with Epilepsy, a Mother/Daughter Blog.
Brain Blips: An Epilepsy Journey
2y ago
We were so hopeful. Again. That we were done.
But we weren't. And again, we aren't.
With intractable seizures.
With epilepsy surgeries.
And with pandemic surges.
Awesome had another round of
Epilepsy pre-surgery testing
In the summer and fall of 2021.
All this testing
Culminated in a 13-day SEEG in October.
And then in late November,
Two days before Thanksgiving,
All of Awesome's doctors' meticulous data gathering
Careful analysis,
Deliberations, discussions, and decision making--
Things at which they'd worked so long and diligently--
Came to fruition:
Awesome had ..read more
Brain Blips: An Epilepsy Journey
3y ago
It is the winter solstice.
The days are short, cold, and dark.
There is little light.
Or warmth.
And very little good news.
By the time we wake in the morning,
There are only six hours of daylight left before it's dark again.
We are under siege.
Every day is the same.
It is always night.
In this endless year
The Covid-19 pandemic with its mind numbingly scary
Knowns and unknowns surrounds us.
We shelter in our homes,
Avoiding each other as if each of us
Might be the Angel of Death in disguise.
Two weeks ago
Awesome's grandfather tested Covid positive.
Five days later ..read more
Brain Blips: An Epilepsy Journey
3y ago
"And she never gave up." It's what her shirt says.
This girl, Awesome, it’s her Sweet 16 today (during the Covid pandemic).
She is Smart. Talented. Kind. Social. Friendly. Loyal. Loving. She marches to her own drum, joyfully and self-confidently. She is strong and brave. She is a fierce warrior who has faced and endured more in her 16 years than most people who are twice or three times her age.
She said her first words at 6 months, was talking in sentences at 1 year, and was r ..read more
Brain Blips: An Epilepsy Journey
4y ago
Today is the 6 month anniversary of Awesome's SEEG surgery. There are some days and life experiences that you will never forget. That day was one of them.
Early January in New England. Cold. And at 4:30 AM, very dark.
We'd choreographed the morning plan, rehearsing it over and over again in our minds, looking for holes--for things we'd forgotten. In those kind of situations, one does everything possible ahead of time. We'd laid out our clothes for the day. Packed Awesome's and my suitcases. Put coats and boots by the back do ..read more
Brain Blips: An Epilepsy Journey
4y ago
We live in such strange times.
Housebound. Isolated.
More germ-phobic than Monk.
Characters on TV amaze with their casual attitude
Towards being physically close to each other.
Were we too once brave enough to be close?
Was there really a time when we didn't shrink
At the thought of being in close physical proximity to
Other human beings--whether family, friends, or strangers?
Did we really once crowd together in groups?
On elevators, in airports, at weddings, and everywhere?
Did we really once share the same airspace?
And not worry?
Was there really a time when we didn't shrink
At the ..read more
Brain Blips: An Epilepsy Journey
4y ago
As you recover from a seizure
Your service dog and I watch over you
With love and concern.
And I think of the ironies
Of the situation in which we find ourselves.
I think about how
In the middle of hardest January
Following close on the heels of scariest December,
You cried and declared,
That you could not go on.
That what life had handed you,
That what was being demanded of you
In January
Was too hard.
That you could no longer do it.
(Though we both knew there was no way out
Except by enduring the hard things before you.)
And I told you
Not to give up then.
Because you were in view ..read more
Brain Blips: An Epilepsy Journey
4y ago
Epilepsy is all about uncertainty
And unpredictability
From moment to moment
From hour to hour,
From day to day
We're on the other side of Epilepsy Surgery
But the uncertainty is still there.
We live with it every hour of every day.
And it's not just the usual
Uncertainty and unpredictability of seizures.
But it's also now, the big picture of not knowing
Whether we're on the amazing threshold of a new life
Without seizures.
Or whether we've traveled a long way
Simply to end up back again
Exactly where we started at the beginning.
Or perhaps somewhere in between:
Doctors can't give us an ..read more
Brain Blips: An Epilepsy Journey
4y ago
It's been a very long journey with a lot of twists and turns, but after two Phase 1 testings at two different hospitals in two different regions of the country, and after three different Children's Hospitals' epilepsy surgery conferences--encompassing scores of the best neurosurgeons, epileptologists, and other epilepsy medical professionals in the US--considered, debated, and weighed in on Awesome's case, Awesome finally had two epilepsy surgeries in January.
On January 9, Awesome had a five hour SEEG surgery to insert 10 electrodes directly into her frontal lobes via burr holes in her skul ..read more
Brain Blips: An Epilepsy Journey
4y ago
As we were leaving the hospital yesterday with our daughter Awesome who has intractable epilepsy and who'd just undergone pre-surgery neuropsychological testing, we were waiting to turn left onto a main street that runs through our local state university. And as we were sitting there at the stop light, which is right across the street from the one of our Children's Hospital's parking decks, I saw two enormous (story-high) purple ribbons affixed to the front of one of the university's buildings. I pointed them out to my daughter.
Awesome, who is always noting how no one cares abou ..read more
Brain Blips: An Epilepsy Journey
4y ago
Five minutes isn't a long time,
Except when a child is seizing.
And then it's an eternity.
And ten minutes
Is the equivalent of two eternities--
And two eternities, without intervention
Can become a serious--even a life-threatening--
Medical emergency
--------------------------
I can't put into words the emotions I feel
As I glance at the clock on the wall,
And once again rise from my chair
On the edge of the circle of moms.
Five minutes have passed since I last saw Awesome.
But I must go find her again
To make sure, once again, that she's safe.
And that she isn't seizing ..read more