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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.

Luau

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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Battling the Universe

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!

~Luau

The journey of a thousand miles begins with one step
-Lao Tzu

Or, in my case, the journey of 26.2 miles.

Every year, twice a year, once in mid-April and again in early November, I feel the pull.  The gravitational waves of the marathon hit me, remind me, call me.  This past weekend was no different.  Though I was away from Boston visiting family, I still saw the feed of marathon photos on Facebook, reminding me that I have been away too long.

It’s been three years since I’ve run a marathon of any kind, full or ultra…and I miss it.  Yes, I miss the crossing of the finish line, but I also miss the training – the sweat, the pain, the flow, the highs, the lows…there is something about running, about marathon training in particular, that is meditative…an almost zen-like journey of self-discovery.

Life has little by little nudged me away from running and I don’t like it.  So today I took a proverbial first step of what I hope will be my journey back to 26.2 miles…I ordered a fresh pair of running shoes, the newest iteration of my favorite running shoe; the one that took me to my 3 fastest marathon times.  They arrive tomorrow, just in time for a weekend run.

I hesitate to call it a comeback…it’s still early and I’ve had a few false starts over the years, but maybe if I start writing about running again, that will help too.

Don’t call it a comeback…not yet anyway.

Stay tuned!

~Luau

Special Snowflake

Amy Roe, a fellow runner, one I do not know, recently wrote this for the Guardian:

I was ordering coffee when I noticed a well-dressed woman staring at me.

“You look like you just did a class,” she said, giving me the once-over. I had no idea what she meant so I said nothing.

“Or swimming?” she offered, with a tight smile.

Oh, that. I’d just run 12 miles and the hair sticking out from under my hat was wet. It took me a moment to formulate an answer.

“Um, running,” I mumbled finally. “I just … sweat a lot.”

I took the paper cup of drip coffee and hustled past the condiment bar. Screw the half-and-half; I’d drink it black.

Once safely inside my car, I threw off my damp running cap and flipped up the hood of my sweatshirt in embarrassment. I wanted to dive deep into that Lululemon Scuba and never come back up for air.

Eventually the caffeine kicked in and it hit me: I’d been sweat-shamed. Sweat-shaming is when someone points out your sweatiness as a way to signal disapproval.

Now, maybe it’s that as I get older, I get less tolerant of this kind of bullshit.  Perhaps, because I’m a man, I have gone through life sweat-privileged.  Perchance, there really is a thing called “sweat-shaming”…but this, dear Amy, this, you Special Snowflake, was not that.  This was someone making friendly conversation while she, like you, was waiting for her over-priced coffee (mind you, I love my Starbucks…Italian Roast Clover…zing!).

What you did, Ms. Roe, was what we call “Friendly Conversation Shaming”.  Well, that’s not really a thing either, is it?  Maybe you were “Well-dressed Shaming”…”Observation Shaming”?  I digress.

Had she said, “whew!  YOU stink!” or “Ew.  How can you walk around like that.” you might be on to something, but this:

“You look like you just did a class,” she said, giving me the once-over. I had no idea what she meant so I said nothing.

“Or swimming?” she offered, with a tight smile.

Um, no.

Your reaction was more a reflection on how YOU feel about sweat; how you think others feel about sweat.  It has nothing to do with that well-dressed woman.  She was making small talk.  Perhaps, wanting to start an exercise program of her own, she was inspired by you?  Well, you’ve killed that now, haven’t you?  Maybe she liked your $120 hoodie and wanted to know what brand it was?  Speaking of which, why you felt the need to point out that you wanted to bury your head in your Lululemon Scuba, I have no idea.  It screams, “I’m white, I’m wealthy, I’m privileged and Waaaah!”

It’s possible that she simply was trying to make the world a friendlier place by finding a topic you might have in common (maybe she’s loves taking exercise classes).

Roe goes on to write:

If I were to re-imagine the sweat-shaming incident as a music video, it would play out like this: a spotlight comes down, and maybe a disco ball. Baristas dance back-up around me.

“I don’t think you’re ready for this sweaty,” I belt out, to the tune of Bootylicious.

It’s just a fantasy, but it helps me see how I might react differently. I’ve got another long run this weekend and afterward, I’m going to sit down with my coffee, all sweaty and transgressive.

The stigmas surrounding women’s bodies are powerful, but they’re no match for how powerful I feel after running.

Several things – first off, how old are you?  Seriously!  14?  Because that is how old you sound.  Perhaps you need to look in the mirror and sing “I don’t think you’re ready for this sweaty,” to yourself before doing it to random strangers, even if it IS in your own fantasy.  Second, a better response might have been something along the lines of, “yeah, just did 12 miles.  Tired, obviously,” as you point to your hair, “but totally worth it.”  Third, transgressive? Really?  You’re going to sit with your coffee, all sweaty and transgressive?  Nothing like responding to a perceived wrong, and I emphasize perceived, with an actual wrong.  If you are actually really sweaty after a 12 mile run (I know I always am), don’t sit on the chairs at Starbucks…that’s just rude, and again, you’re revealing your own insecurities and immaturity.  Finally, you say that “the stigmas surrounding women’s bodies are powerful, but they’re no match for how powerful I feel after running.”  Your own post contradicts this.  After a long run, I am generally soaked.  I wear that sweat like a goddamned badge.  I do feel powerful after I run, no matter how tired I am.  And if I walk into a Starbucks after a long run, if anything, I am “You’re-Not-Working-Out-As-Hard-As-I-Am-Shaming” everyone in the place.  Crawling into your $120 Lululemon hoodie does not bring “how powerful I feel” to mind.

Get a grip.

Let’s be clear, you say, “Strong may be the new sexy and fit may be the new skinny but sweaty is as gross as ever.”  Wrong.

Sweat. Is. Sexy.

I give you…

Serena...

Serena…

tn-gnp-sp-0812-rousey-pg-014

Ronda…

Alex-Morgan

Alex…

9524926b80919875b847796f03041e86

Lindsey…

3763076286_2a4f7560b7

Gina…and many, many more.

I rest my case.

Projecting your own insecurities onto others does nothing to move society forward.  Assigning “Sweat Shaming” to “You look like you just did a class,” is immature, insecure and most likely, narcissistic.

Own it, Amy.  You are not a Special Snowflake and not every comment is an attempt to “shame” someone.  This post, however, is.

Listen

There are times I look at #BlackLivesMatter and I understand neither the tactics nor the intended message.  There are time I read about or listen to #BlackLivesMatter and simply cannot relate.  There are time when I see a thread on Facebook regarding #BlackLivesMatter and I am tempted to jump in and say “try this!” or “do that!” or “I really think that if you said or did it this way you would get your message across better.”

But here’s the thing.  I’m not Black.  I don’t consider myself white (less than 1/2 of my heritage is white…15/32s the be exact), but the way I look, especially as I spend less and less time getting a dark tan that generally used to last me through the winter, allows me to pass as white; that, in turn, allows me to experience the privilege White people experience in this country.  That very fact is why when I follow a conversation or social media thread that touches on #BlackLivesMatter, I tend to shut my mouth and open my ears.  When Black people speak about racial issues and #BlackLivesMatter, I don’t speak; I listen.  I truly believe that no matter how well intentioned my beliefs or opinions might be about being black in America, the experience and opinion of someone who has lived that life will trump my thoughts on the topic every, single time.  If my thoughts on the topic don’t match up with what Black people are saying, in all likelihood, the problem is mine, not theirs.

If asked directly, I will gladly give my thoughts on the topic, but in general, I will defer to my black friends for guidance.  To me, #BlackLivesMatter is a manifestation of Black people taking back control of their voice, one that has, for too long, been in the hands of people who really didn’t know what it means to be Black in America.

You see where I’m going with this, right?

My daughter is autistic.  I am not.  In a vacuum, facing her initial diagnosis, my inclination, my goal, my purpose was to make her better.  All I knew about autism was what I had seen on TV and then what I had read and heard through Autism Speaks.  I bought in and ran. I ran and ran and ran some more, raising money for Autism Speaks along the way.  They were going to fix my daughter, cure her, make her better.  Speaking with other parents of autistic kids, we found encouragement to keep doing what we were doing.  We spoke at kickoff events.  We recruited. We got others to raise money.  We had direction and purpose.

But slowly, too slowly, we began to listen to voices that questioned what we were doing.  Why were we raising money for Autism Speaks? Why were we supporting Autism Speaks?  These voices did not come from fellow parents, the people we could most relate to.  No, these were the voices of the very people we were “helping”.

At first, I thought, well, they just don’t understand.  I could not have the structure of the world I had built dismantled.  This advocating gig was what partly defined who I was.

But the voices got louder.  Jess was the first to come around.  I continued for a while to work with Autism Speaks, believing that as long as I insisted I was doing it to raise awareness, I was doing a good thing.

But these were autistic voices, speaking for autistic individuals, saying, “Hey! We’re right here! We want OUR voice heard. We want to speak for OURSELVES!”

Yes, I am a dad. I am a dad of an autistic girl.  I am not autistic.  I know what it is like to be the parent of an autistic girl.  I don’t know what it’s like to be autistic.  

In a vacuum, I will gladly speak for my girl; for both of my girls.  But if they want to, if they can advocate for themselves, and they tell me that I am not expressing their desires, their wants, their needs, perhaps I need to step back and let them speak; perhaps I need to step back and listen.  Today’s autistic advocates are the grown up versions of Brooke.  I may not understand their message all of the time or their priorities, but their message, their priorities are for Brooke, for all of the Brooke’s in the world.

If a black person is speaking about #BlackLivesMatter, and you are not black try to listen.  Don’t speak, listen.

If an autistic person is speaking about autism and what the autistic community needs, and you are not autistic, even if you are a parent, try, at least for a genuine moment, try to listen – I mean REALLY listen.  

Don’t speak, listen.

1440456598-ashmadimage

If you’ve been here for more than a few moments, you probably know that politically I lean left – left center on some issues, far left on others.  I have to admit that not so deep down inside, a part of me has taken some glee in watching several social conservative celebrities and politicians squirm and perform figurative gymnastics in the wake of this whole Ashley Madison data dump.  That glee, of course, stems from the fact that many of these social conservative types preach and preach and preach and preach about family values, claiming that same sex marriages and working moms eat away and destroy the moral fabric of our society.

Right.

Karma…she’s a funny lady.

My gut reactions when the names of these social conservatives started popping up was, “good!  they deserve it.”  My initial reaction when some wrote asking why “conservatives were getting slammed and not the gajillion other (liberal) people on Ashley Madison?” was “well, those gajillion other people aren’t preaching conservative family values.  They aren’t condemning gay marriage because it will break up traditional families…blah, blah, blah.”

I really felt like they were getting what they deserved.

Lately though I am having a harder time with this.  My overall feelings toward those social conservatives hasn’t changed.  I think they’re dopes, especially those who are getting pregnant while swearing by abstinence, but my gut feelings toward those caught up in the Ashley Madison data dump are now tempered with a sense of uneasiness.

The Ashley Madison hack was theft, plain and simple.  Many of us, including myself, have been laughing at these social conservatives for what we say is their own stupidity or cluelessness.  They were asking for trouble, we say.

They were asking for trouble.

Here’s the thing though…they didn’t do anything illegal.  Did they do something dumb?  You betcha!  Maybe even reckless?  Sure.  Immoral?  I suppose it depends upon who you ask.  But they did nothing illegal.

But a crime was committed.  Information was stolen.  People who had no right to that information released it to the public.  I haven’t seen one post from my fellow liberal friends shaming the hackers.  How would you react if a thief broke into your house and shared every secret you may have hidden in your closet to the world?  Can you honestly say that there is nothing in your home that might be a cause of at least a little embarrassment?

Instead, we on the left have gleefully shamed the social conservatives caught in this mess because they deserved it…because they were asking for trouble.

That sounds a lot like language some of our conservative friends use to downplay the way women are treated in this country.

If you are in a monogamous relationship and you want to check on whether your spouse was on Ashley Madison or not?  Well, I suppose that is between you and your spouse, but unless that is the case, who is or isn’t on Ashley Madison is none of our business.  We don’t know the inner workings of each marriage.  Your  neighbors’ approach to marriage may well be very different from your approach to marriage, despite outward appearances and that is none of our business.

We on the left talk about keeping government out of bedrooms.  How about we keep everyone who hasn’t been invited or doesn’t live there out of them as well.

 

Justifying the Means…

A few weeks ago I got suckered.  I read this amazing post about a person who had been fat-shamed publicly online while minding her own business at a baseball game.  A trainer had called her out on his Facebook page and, having caught wind of the post, the victim hit back and wrote a wonderful piece about how she was on a journey of weightloss; working toward a more healthful lifestyle, but remembering to enjoy the present.  It was a wonderful message, reminding all of us that we don’t know where someone is on their journey in life.  I posted it on my Facebook page because I found it inspiring.

A day or two later, I found out that it was all a fraud.  A blogger, know to many as the anti-Jared, had seen the trainer’s post and decided that since he knew someone who had experienced something similar, HE would take on the persona of the victim, whom he did not know.  I felt icky, used, misled.  I was told that he does this from time to time and that anyone who follows his blog knows this.  I, along with millions of others, do NOT know or follow his blog.  I, along with millions of others was duped into believing an inspirational story that turned out to be nothing more than a ploy to go viral – which is why I will NOT link to it.

He later offered a non-apology to those who felt they were misled…kind of a “I’m sorry that you misunderstood, but…” kind of apology.  I hate that kind of crap.  It passes blame to the very people who deserve an apology and exonerates the person who perpetrated the misdeed…

In the end, his tactics only hurt the cause.  His post could have been just as powerful had he opened with a disclaimer.

To the anti-Jared, the ends justified the means…

The ends should NEVER justify the means.

***

As I was contemplating this post, I saw two anti-vax memes.  Now, as many of you are aware, I am a proponent of vaccines.  I hear the arguments of those who are adamantly against vaccines and those who advocate a choice and I still feel like the best course is the one we are on.  But this post is not about the debate whether one is for or against vaccines; it’s to ask, do the ends justify the means?  The posts I saw were from a heartless, dark souled woman who goes by the name Tenpenny.  In one meme she compared getting vaccinated to getting raped.  She had posted it several times because, she said, that whether we agreed with the message or not, it was promoting discussion.  To her, it didn’t matter that she was belittling the experience of millions of woman who have been brutally violated.

Let me be clear – you and I may or may not agree on vaccines.  Some of us want them; some of us don’t.  Nobody wants to be raped.

Her second meme asked, if the rise in autism  was a result of better diagnoses, where were all of the nonverbal autistic adults walking around in diapers and helmets.  I stared at the screen waiting for what I saw to change into something, anything else.  Forget the fact that she has a distorted view of pre-verbal autistic individuals – to her it doesn’t matter that she insults and belittles an entire portion of the population, making massive assumptions.

To her, the ends justify the means.  To get her message across, she doesn’t care who she hurts.

The ends should NEVER justify the means.

I thought about posting the two memes here so you could see just how awful and repugnant they were, but upon further consideration, I thought better.

***

I am sure that along the way, I have been guilty of some questionable posts.  I hope I have never done anything as egregious as the anti-Jared or Dr. Tenpenny.  If I have (or do in the future), call me on it, please.  Unless I am able to justify the means on their own, independent from the ends, I will take down the post and apologize profusely.  I expect no such apology from the soulless, attention seeking types like the anti-Jared or Dr. Tenpenny.

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