Archive for the ‘Uncategorized’ Category

She is not Less

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.


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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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 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…


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…


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.



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…


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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300 Seconds

Timer set to five minutes…300 seconds

As a marathoner I was always counting: mileage, pace, time.

It was constant.  

Toward the end of a marathon, or any race for that matter, I would distract myself from the pain in my legs and lungs by constantly running the numbers of how far I had gone; how many miles were left; what my current time and pace were and what I needed to do over the remaining distance to achieve the time I wanted. With every step the variables would change, so I would run the numbers again and again and again.

It got to the point that I would find myself doing similar things when driving long distances.

Lately, the numbers game in my head has changed.  I haven’t run as much in recent years, and it has been over three years since my last marathon.  Recent changes to our landscape however, have forced me to have a different kind of math running through my head…and this math is ever-present.  Today the number that is constantly going through my head is 300.  Over and over again my brain begins a simple countdown starting at 300.

But I never let myself get to zero.

Wherever I go with Brooke – to the market, to a restaurant, even a short, five minute walk with the dogs – I carry her diastat (her rescue medicine) with me in a small backpack.  It is the the emergency medicine we administer to her if she does not come out of a seizure within five minutes.  That’s 300 seconds.  300 seconds during which the body is not breathing.  I can barely hold my breath for 90 seconds. Multiply that by 3 1/3.

As short as 5 minutes is, 300 seconds is a painfully long time-especially if you are watching a loved one go through a grand mal seizure.

300 seconds is an eternity.

We have a monitor in her room now, but she likes to move about.  Whenever she walk out of view of the monitor, or goes to another room, or if I have to shower, or she goes to the kitchen to get herself a drink, the timer in my head starts.

300, 299, 298, 297, 296, 295, 294, 293…

Even with the monitor, one has to stay vigilant.  If I’m studying, grading, reading, watching a show, I still have to check the monitor.  What good is a monitor if you aren’t using it? 

…292, 291, 290, 289, 288, 287, 286, 285…

To be honest, I never get past 2 minutes without…

“Brooke, you alright?”


I imagine she gets tired of the constant check ins.  Sometimes I change it up…



“I love you.”

“I love you too.”

I will tell you this, the girl knows her daddy loves her.  


But the counting is constant.

The counting doesn’t stop.

Lord knows that if at some point I call out to her and she doesn’t answer because of a seizure, I have to know potentially how long she has been seizing.

The counting is constant.

The counting doesn’t stop.

I count ourselves fortunate in that we have had to use “the rescue” only once.  

The counting is constant.

The counting doesn’t stop.


As I work my way back into running, I know I will pick up my old math habits again-the habits that eventually went away.  

I wonder if I will ever stop counting the 300.


If you are so inclined, I would be grateful for your support as I raise fund for the Epilepsy Foundation.  You can visit my fund raising page —> here <—.  As of this writing, you have helped me raise over $9,500.  My current goal of $10,000 will need to be adjusted.  The New York City Marathon team as a whole is trying to raise $49,000.  We are just over $20,000 at this point, in no small part due to your tremendous generosity.  I am grateful for your continued support of our family and of the causes we champion.

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Changing Landscape

Brooke having lunch with Clifford after getting set up for “their” 24 hour EEG.

When Brooke was first diagnosed with autism, Jess and I sat in our car and cried.  We did not know what to expect.  We did not know what lay ahead of us.  Our journey would take us down the typical path of the time: fear, anger and then demands for a cure.  We would eventually come around to the realization that Brooke’s neurology was not broken; it was, scratch that, it is different.

In those early day I found myself looking for a purpose.  I was a stay at home dad whose world had just been turned upside down.  Honestly, autism scared the shit out of me. I felt helpless.  How could I help my girl?  How could I make her better?  Quite accidentally I stumbled into running (a story for another time maybe).  At first it was a stress reliever, but the more I ran, the more “running for a cause” began to creep into my consciousness.  I eventually hooked up with Autism Speaks and ran in three New York City Marathons and one Boston Half-Marathon raising awareness and thousands of dollars in the process.  At one point I was literally on billboards in different parts of the country encouraging people to sign up to “run with Autism Speaks.”

Ultimately, Jess and I parted ways with Autism Speaks (another story for another time perhaps).  Simply put, we had evolved in our view of autistic individuals.  We began to listen to autistic adults.  What they told us was that there were other ways, better ways to help.  We began looking for other charitable organizations.  

It was shortly after this time that Brooke began to show some signs of epilepsy.  We had all the tests done.  Nothing.  They told us just “keep an eye on things”.

Then last year on St. Patrick’s Day everything changed.  I was coming home from the grocery store.  As I pulled into the garage, Jess was on her way out.

“She had a seizure,” is all I remember.  I dropped my groceries and we sped to school.

There would be one more twelve days later before Brooke would be put on meds.  

Despite the other stressful things going on in our lives, this part of it, the Brooke part, would, with the help of medication, return to a distorted sense of normalcy.  That normalcy would be shattered almost ten months later.

Over the last few months we have had to deal with seizures that are occurring at an increased frequency.  Medication are being adjusted as we go, but we are still in a state of uncontrolled seizures.

This new landscape has brought back 11 year old memories.  I think about that scared father a decade past and I realize that I am more scared now that I ever was then.  Yes, there are challenges to being autistic for Brooke, but epilepsy is a whole new thing.  Anyone who has witnessed a grand mal seizure can attest to the ultimate helplessness one feels.


The landscape for us has changed.  We have learned to embrace Brooke’s alternate neurology.  We continue to fight for her right to access, but long ago rejected the idea of a “cure”.

The landscape for us has changed.  The impact epilepsy has on any given moment is overwhelming.

The landscape for us has changed; my body has changed too – I am no longer as strong or as fast as I was nearly decade ago.  But my determination to help make the world a better, safer place for my baby girl has not wavered.  I stopped running regularly a few years back – I’m not sure I ever truly bounced back from my 100-miler.  

My legs are older; my lungs are older; my stamina is not what it used to be.  My heart is heavy.  But as the landscape around me changes, I must do the same, and sometimes changing means returning to the past.  

Without really thinking about it, after one of Brooke’s recent seizures, I signed up to raise money for the Epilepsy Foundation.  I will be running the 2017 New York City Marathon.  As of this writing, with your help, I have already raised over $9,200, nearly three times the required minimum and less than $800 short of my goal (with nearly seven month to go – perhaps I should raise my goal again?).

I had originally planned on returning the the marathon distance in two weeks at the Providence Marathon, but in my eagerness to get back into distance running, I injured my leg.  My run in November is too important to risk derailing my training this summer, so I am taking the time to let my leg heal.

I will not be as fast or as strong, but I will be as, if not more determined.  

This is what I wrote on my fundraising page:

No one should have to live in fear of the next seizure – not the one who suffers from epilepsy nor the loved one who can only watch, powerless, helpless. The next seizure is a fear that haunts every parent who has a child who suffers from epilepsy. 

Lives turn upside down; sleep becomes a rare commodity; relaxation a dream. Time is spent on the edge.

As a father these moments, these very worst moments of my parenthood, constantly linger at the edge of my consciousness. I am never not thinking about “the next seizure”.

It is exhausting.

I am tired.

But I know that I have to do something, something so my daughter, my family, my friends, you do not have to live in fear of the next seizure…the worst moments.

I know that we can’t solve epilepsy in one day or even with one fundraiser, but we need science to develop the tools to mitigate if not eliminate these worst moments. This is why I am raising funds to make a difference in the lives of people living with epilepsy.

This is why I am running again.

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. 

Please support this cause by making a safe and secure donation to my fundraising webpage. Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the 3 million people in the U.S. who are living with epilepsy and seizures like my Brooke. 

Thank you for your help and support.


This week won’t involve any running.  Jess and Katie are taking a week long trip that has been planned for over a decade.  Brooke and I will be doing whatever Brooke wants to do for the April break.  I’ll continue to rehab my leg and focus on core strength.

If you are so inclined, I would be grateful for any donations to my effort to raise funds for the Epilepsy Foundation.  You can donate —> here <—.

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

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My shoes arrived Friday afternoon.  Because the delivery tracking has said they would arrive around 8PM, Friday night, my thought had been that I would wait until Saturday to take them out for a spin.

But they arrived in the afternoon.

Inertia and routine are a funny thing – they don’t like change…they fight change.  I stared at my cool, new, Boston Saucony Kinvara 7s.  I thought about taking them out for a run, but someone mentioned dinner and inertia and routine had their way…for the moment.

At dinner, I decided perhaps I would go for an early evening run, so I ordered light and skipped my usual beer.  I wasn’t going to let inertia and routine have their way with me.  They fought back.  About half way through dinner, the proprietor of the restaurant came to me an oversized bottle of Japanese beer.

“Mr. Matt!  I spilled a little of this when I opened it for a customer, so I can’t give it to them.”  There was still at least 90% of the beer still in the bottle.  “So, here you go!  On the house!”

What was I supposed to say?  I poured a glass and took a few sips.  I love beer.  I really, really love beer and after a long week, those few sips went down nice and easy.

Inertial and Routine rubbed their hands together, smiling…an evening run drifted from my mind…but only for a moment.  Half a glass later, I put it down and asked for the bill.  My beer loving friends would be horrified, but I was not going to let the Universe win this one.

Upon returning home, I was determined to get myself out for just a short run.  I picked up the shoes and headed upstairs, but as I passed the front door, I looked out.  It was raining.  Inertia and Routine were throwing up one last hurdle.

“How bad do you want it, Luau?”

Ugh! Do I really want to take my brand new shoes out in the rain, I asked myself ridiculously.  Seriously, I asked myself that question.  Inertia and Routine are insidious.  I balked, decided I’d go anyway and balked again.

Finally, I realized that I need to heed the same advice I give to my clients – if not now, then when?  The problem with tomorrow is that it rarely, if ever, arrives when it comes to getting things done.

So I gave Inertia and Routine the middle finger, put on my running clothes, found my earbuds, and went out the door.  What followed was an uncomfortable 3 miles that was surprisingly even paced (the last 2.5 miles being paced between 4:28 and 4:30 1/2 miles – final time was 27:23).  My average heart rate was 147 bpm…way above what it used to be for a run at that pace.  After spending this morning with clients, I followed up yesterday’s run with another 3 miler; this one at a little zippier 23:31 (mile 2 even coming in at 7:29), but with an average heart rate of 166.

It’s a start, but I’ve obviously got a ton of work to do if I want to even think about contemplating the idea of running a BQ (3:25) again.  What I do know is this: round 1 of my battle against the universe, specifically inertia and routine, goes to me.

The battle continues…

Stay tuned!


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