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One of the reasons I have loved my return to teaching is that at some point early on in my return, I had the epiphany that teaching English was a wonderful opportunity to help mold better humans.

How so? In my classes, we read a lot: books, essays, short stories, poems…well, maybe not so many poems.  I’m still working on my poetry analyzing skills, but the point is, we read.

A lot.

And then we discuss.

That is when I feel like I am helping to mold better human beings. We talk about the choices characters, major or minor, make. Would we make the same choices? Would we not? Why? There are never right or wrong answers. When it comes to discussion, I don’t believe there are wrong answers as long as you can back up what you are saying with contextual evidence.

I believe that if you can find some way to relate to characters in a book, whether you like them or not; if you can understand the choices characters make in a book, whether you agree with them or not, then you are more likely to have a capacity for empathy.

To me, empathy, true empathy, is something that makes each and every one of us better. Empathy allows each of us to take at least a moment to walk in another person’s shoes, to live the life they lead, to experience the path they take. It prompts us to choose kindness.

***

Yesterday I attended a presentation from a speaker who had some good ideas. My perspective on certain things were challenged, but for the most part I felt that I was actually getting something out of it…

…that is until the end when this speaker chose to close her presentation by gleefully making fun of those who need certain accommodations in the world in order to have access to a life the rest of us have.

She essentially said that accommodations like signage letting people know where to stand was an example of society falling apart. Slide after slide she continued to talk about the absurdity of needing signs that said, “Please don’t run” or “stand back to respect patient privacy” or “don’t stand on toilet”. There must have been ten, fifteen, maybe twenty slides, each inciting ever growing laughter from the crowd…

…each a slap in the face to Brooke, my autistic and epileptic daughter, and individuals like her that may need a little help knowing where to go, what to do, or when to do it. Each slide the laughter rose as did my concentrated rage.

According to the presenter, we shouldn’t have these ridiculous accommodations, because  nobody should need them – people should just learn them. Apparently Brooke’s needs are not worthy. Apparently the needs of those like Brooke are not worthy.

The more people laughed, the angrier I became; not at the audience – they had been set up to laugh. No, my rage was directed solely at the presenter who should have known better. She is a social and emotional behavior “expert”. Today I put that in quotes quite purposefully.

She went after a group of people who are vulnerable for laughs. She went after those who most need the rest of us to be empathetic. She was punching down.

Here’s the thing: I am a big fan of teasing. Teasing those we know well can help solidify our bonds. But the key is teasing should generally happen between people who know each other, people who care about each other, people who understand each other. Teasing allows us to self-reflect and acknowledge our own shortcomings…we all have them.

But when you tease an entire group indirectly, especially a vulnerable group for the sole purpose of getting laughs from a group you perceive as an “us” vs an “other”, then you’re behaving like a bully.

I don’t know this presenter well enough to know whether she is a bully or not, but her actions were that of a bully.

Whether the presenter realizes it or not, she sees my Brooke, and those like her, as less.

She and those like her are NOT less. She and those like her deserve to be treated with dignity. She and those like her should have access to the rich experience of life, just like the rest of us.

Accommodation, no matter how absurd it may feel to you or me, gives normalcy to someone who needs it; it allows those who this woman would classify as “others” to be part of “us”.

We all deserve to be “us”.

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Week 0.2

I feel like I’m off to a good start.

Of course, that’s easy to say just two, three days into training while I’m still bathing in the excitement of having signed up for another marathon.  The truth is, the “training” doesn’t really start for another six to eight weeks. For now, it’s just about trying to build a small base to work off of.  That being said, 0.2 weeks in, I’ve managed to get in a couple of runs when I would not, in my current life, normally have.

Friday, after school, I slipped into the gym to hop on the treadmill for what felt like a snappy 4 mile run. Thirty two minutes later my legs were spent and I had my first moment of “uh oh, what have I gotten myself into? How the heck am I going to pace my friend to a 3:40?” Still, it felt good to sweat from running.

This morning I hit the roads for 4.61 miles.  The first mile, in 36° weather, was a struggle at 8:40, but I finally managed to settle into a nice pace in the 8:10-8:15 range – breathing was normal, heart rate was higher than I’d prefer. I picked up the pace over the last half mile or so, finishing my run in 37:47.  I was happy with the pace, but I’d like to bring my average heart rate (150bpm) down a little.

To get my friend to the end of Sugarloaf at three hours and forty minutes on the nose, we’re gonna have to run about an 8:23 per mile pace…for 26.2 miles. After 0.2 weeks, I know I have a long way to go to a) get back into marathon shape and b) be in the kind of shape that I can cover the distance in less than 3:40, but I’m feeling good.  I’m confident that we can do this.

I have no deep, profound thoughts from my two runs this week.  I’m just trying to rediscover the magic.

Week 0.2 Totals:
2 run
8.61 miles

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26.2 Weeks for 26.2 Miles

Today I signed up to run a marathon.

In six months I will be running Sugarloaf.

This time around I will not be running to raise money; this time around I will not be running to raise awareness.

I will be returning to the course of my second fastest marathon…seven years later.

Seven years older.

Though I am technically running because I promised a friend I would pace her to a 3:40 finish, the truth is, I want to know if I can do it.

I want to know if I can run 26.2 miles again.

I want to know if I can run that fast again.

I want to know if I have the strength to train hungry again.

The race takes place in 26 weeks and two days.

26.2 weeks.

Kind of poetic, I think.

Sugarloaf 2012

Sugarloaf 2012

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The Voice

Every time she has a seizure, there is a voice in the back of my head that whispers my most terrifying fears.  Over the last few years, after countless seizures, I have learned to manage that voice.  I have built emotional walls and intellectual buffers, soulful charms and spiritual amulets to ward it off, to keep it at bay.  Over the last few years, I have managed to confine that dark, horrifying voice to a small piece of mental real estate in the far recesses of my brain..

But it is always there.

Waiting.

Its presence is palpable.

And when the seizures do come, it whispers with evil intent.  It knows that despite the walls and buffers and charms and amulets, I can hear it.

Most of the time the voice is low, distant.  It has become something I can uncomfortably live with.  I hear it, but I do what I can to ignore it.

Every once in a while though, a seizure will last longer than usual.

And then the voice gets louder.

Every once in a while though, there will be no verbal response from my baby girl for four, five, six, seven minutes or longer.

And then the voice gets louder.

Every once in a while though, the positioning of her body will cause her to choke, in turn, making it difficult to breath.

And then the voice gets louder.

Every once in a while though, her lips will turn blue.

And then the voice is screaming in my head – screaming my worst fears.

This afternoon was such a day.

***

And then things are back to…”normal”.

I don’t even know what normal frakking means anymore.

She laughs, she squeals, she skips, she laughs.

I smile, I sigh, I love, I force a smile…

Because the voice…the voice is always there.

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Zero

Boot Camp is about to start.  My campers are trickling in.  One, a camper who had moved away to another town, has managed to come for a “guest appearance”. We catch up, talking about this and that.  Inevitably the conversation turns to Brooke.

“How’s she doing,” a camper asks.  I sit on a bench and sigh.  

“As of today, we are two weeks seizure free.”

“That’s great,” another camper says.

“It’s a start,” I say, “hopefully two weeks becomes a month and then a year.”

Another camper walks in.  

“Time to get these folks warmed up,” I think.

And then my watch rings, followed by the speaker my phone is set to stream music too.

“Jess iPhone” the screen screams.  It’s 6:55, five minutes before class.  

I pick up the phone.

“Did you get my text,” she asks, her voice unsteady.

“No,” I say, but I know exactly what she wrote.  I know exactly what she is going to say.

Brooke had a seizure.  We’re on our way to the hospital.

I look up at my campers.  They see it on my face.  I don’t have to say a word.

“Go!” they say in unison.

***

“14 days” is gone.  The count returns to “0”…again.  After throwing my equipment in my car, I race as fast as I can to the hospital.  My mind is racing.  I hear parts of our broken conversation.

“It was bad,” is what keeps playing over and over in my head.  I bang the steering wheel with my fist.  I try to stop myself from crying.  I scream at the top of my lungs.  I am sad, angry, lost.

“14 days” is gone.  The count returns to “0”…yet again.

“It was bad,” she said.  

I have come to hate the color blue.

***

With each seizure, my run this Fall becomes more deeply personal.  I will push and push to raise all that I can to help find a cure for epilepsy.  I know I keep asking, and I am so grateful that you keep giving.  With your help, I have raised $10,340.  With your help and at your urging, I have raised my goal from $3,250, to $5,000 to $7,500 to $10,000 to finally $15,000.  

If you are moved to donate, you can do so —> HERE <—.  I would also be just as grateful for prayers for my little one and shares of this post.

My hope is that someday, we will never have to return to zero.

Brooke, this past weekend, so happy to be hanging out with two of her best friends.

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Searching for Patterns

Brooke and I at the beach last summer


I gave up on religion a long time ago.  I still say a prayer every night before I go to sleep, but honestly, it’s more a combination of habit and hedging.  Lately, I am finding less and less reason to believe.  

***

It started a little over a year ago: a call from the nurse, a rush to the school.  Even as the events were described to me, I really could not visualize what had happened. Twelve days later, it happened in my arms – my worst moment of fatherhood and now I cannot not see it every time I close my eyes.

A visit to the doctor, a prescription and then…

…nothing.

Nothing for twelve days, thirty days, three months, six, the turning of the calendar, ten months and then…

…a speed bump…

A seizure?  Maybe.  We’re not sure.  It was something.  No, yes, we’re pretty sure it was a seizure.

A few weeks go by…

And then a late night event, stumbled upon because one of us heard something – something that could have easily been brushed off as nothing, something that thank God we didn’t ignore.

We up the medication.  Another couple of weeks and then…

BAM! BAM! 

An MRI, an EEG…nothing unusual, nothing abnormal, nothing to report. Nothing to tell us what to do.  A new medication…a new hope and then…

BAM! BAM! BAM!

And another one today; I literally ran to be with her…

Daddy is here, Mama is here.

Nearly once a week…for four weeks…no, five weeks, no four…

I hate that I can’t remember if we are at six or seven in the last two and a half months! How can I not remember?

I look for patterns, for triggers, for reasons.

Is it light? Is it sound? Is it the weather? The season? Her hormones? 

Is it her diet? Is it her iPad? Is it the water? The environment? Her…what?
Hey, GOD!!! What is it?  

Answer me! Tell me! Help me!!!…help her.

And then I remember: I stopped believing in You a long time ago.

I’m…scared.

***

And so I keep looking for patterns, for triggers, for reasons.  

Her doctor has recruited more doctors.  She now has a team.

I will be Daddy.  

I will hold her, and hug her and kiss her.  I will sit with her, be with her, love her.

I will look for patterns, for triggers, for reasons…

…and I will run.

***

If you are so inclined, I would be grateful for any donations to my New York City Marathon run to raise funds for the Epilepsy Foundation. You can donate —> here <—. I run because it is something I can do to help scientists and doctors find answers; to help them help Brooke. Your incredible support has already pushed me past $10,000.  I have set a new goal of $15,000, which would be over 30% of the team’s overall goal of $49,000 by November 5th.  You keep pushing me to push harder.

As always, thank you for your ever present support of Jess, me and more importantly to us, of Katie and Brooke.

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Every Moment

Brooke on my shoulders, taken almost a decade ago…


Every twitch, every shake, every sudden movement.

Every prolonged silence, every glazed look, every lost in deep thought.

Every loud noise, every patterned sound, every random anything.

I hold my breath, my heart jumps, my mind races.

Every phone call, every text, every email.

Every “Daddy”, every “Honey”, every “Hey”.

Every cough, every irregular breath, every moment…

I hold my breath, my heart jumps, my mind races.

Every race, every run, every mile.

Every push up, every pull up, every sit up.

I do because every moment…

I hold my breath, my heart jumps, my mind races.

Every moment…

Every, single moment…

Every…single…moment…

I hold my breath, my heart jumps, my mind races.

***

You can donate to my fundraising campaign to help end living in fear of the next seizure —> here <— .  Thank you for your love and support.

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