Kohl and the Gang

The night of September 25, 2006 will be with me forever.  I had just started dating my wife Sarah who, like many others, has a tangible passion for the New Orleans Saints.  Perhaps it was my season tickets and not my devastating good looks that initially drew her to me.  Either way, she was ready to stab me in the chest when I chose to bring one of my best friends over her to the now-famous “Domecoming” game in which the Saints played the Falcons in the first game when the Superdome re-opened after Hurricane Katrina. From my perspective, it was early on in our courtship, and taking my friend that I had known since we were five years old was an easy decision.

From her perspective, I was a douche bag for making that move and I would continue to hear about that snub even after she had the pleasure of attending all home games during the 2009 Super Bowl season when I was away on active duty military orders.  We eventually got married, we attend all the home games together and have what I would qualify as a happy and healthy marriage.  She still thinks I’m a douche bag though.

The biggest moment in that game, which is now considered one of the most famous plays in NFL history, was the blocked punt. That play and that game gave me chills for many years thereafter for the typical reasons: the symbolism of rebirth of a city and a team that I care about deeply.  And the fact that the play was made by Steve Gleason, a longtime fan favorite and household name for us was also pretty cool.

But a lot has happened since that day.  The person I was that day was so much different from who I am now. That play still gives me goose bumps, but now for a wholly different reason.

Gleason retired from the NFL, married a New Orleans girl, decided to stay in the city he loves and was diagnosed with ALS. Shortly after his diagnosis, he found out he would be a father.  So, he decided to start recording video blogs for his son to watch one day.  Those videos, along with other video footage of the Gleason family turned into a documentary that they released this past summer.

Shortly after the Gleasons welcomed their first child, we welcomed ours, and on January 12, 2012, Kohl was born.  Because of some rare complications with labor and delivery, he was born with global brain damage and now suffers from severe disabilities. Having embarked on our own life-altering journey after encountering something traumatic and devastating, I find myself admiring the Gleason family even more. This weekend, Sarah and I finally sat down to watch this much-anticipated documentary.

Neither I nor anyone else outside of Steve and Michel Gleason will ever truly understand their daily struggle.  Yet, watching the documentary, I couldn’t help but notice a few parallels between their journey and ours.

Here are a few examples:

Grief’s unexpected bitch slaps

If you have ever been on the receiving end of a traumatic incident, there are plenty of tears and a thousand different ways to deal with it.  But one thing is constant.  Grief never goes away, it constantly lurks beneath the surface, and every once in awhile, it rears its ugly head in the most unexpected places.  There was a scene in which Gleason was participating in a race, not long after the diagnosis. It was a happy atmosphere with some drinking, revelry and friendly competition.  But it was juxtaposed with his wife Michel, who mostly appears pretty stoic, watching from a distance and shedding a tear after seeing the first signs of her husband’s physical deterioration.  We lead very light-hearted lives, but they are also punctuated with little bitch slaps from grief along the way.  Whether, it’s having to sit with Kohl on the sidelines at a birthday party while all the other kids are playing, figuring out ways to sit him up during bath time since he cannot do so on his own or biting our tongue when listening to other parents of healthy children complain about petty bullshit.   It is difficult to capture the full extent of how much this sucks in words, but it is pretty goddamned heart-wrenching.

Sometimes you just have to laugh

One of the ways to deal with these random, unannounced appearances that grief likes to make is through humor. In my opinion, we all take ourselves too seriously. When attempting to deal with the devastation that life throws at us sometimes, being serious can make those situations even worse.  Kohl had to have six surgeries before his second birthday.  Somewhere along the way, I got tired of explaining  to people what kind of operation he was having, so my go-to answer after about surgery number three became: “He’s having a penile reduction.  It’s causing some balance and low back problems.”  In the documentary, there is a scene in which Gleason has lost control over his bowels and requires the intervention of a nurse to extract his bowels the old-fashioned way and, mid extraction, asks the female nurse: “Am I the hottest guy you have ever ass fingered?”

Perhaps I use humor and light-heartedness to a fault and as a cover for not confronting and truly dealing with issues head on.  But fuck it. Sometimes you just have to laugh.

Bad Days

To be sure, however, there are bad days. The Gleasons are heroes to so many.  They started a foundation – No White Flags – that has raised awareness and hundreds of thousands of dollars to benefit people with ALS.  They have inspired millions of people they’ll probably never meet, including us.  In so many ways, they are the shining example of resilience, hope and the power of love.  But they have bad days too.  You see a heart broken wife that never asked for any of this just doing the best she can with a truly awful situation.  There is a clip of Gleason during the waning days of being able to speak on his own showing so much frustration after having a bad day and wanting to just punch something but no longer having the physical ability to do so.  It was agonizing to watch, yet it resonated with me.

My wife and I have spent countless hours and thousands of dollars on therapies not covered by insurance.  I have actually given up my career to pursue training as a practitioner in a form of therapy for Kohl that, on some days, feels like it is not even doing much of anything.  And that is unexplainably difficult.  It is unexplainably frustrating.  I have not and probably never will fully process or accept what happened to my son.

The result is mountains of bottled-up frustration and rage that I sometimes let erupt at the wrong places, at the wrong times and against the wrong people.  I am far from perfect.  It’s nice to know that the heroes among us have bad days too.

***

The Gleason documentary is, at its core, a love story.  The love between husband and wife, and the love between father and son.  And while they deal with extremely difficult situations with poise, humor and light heartedness, they too are far from perfect.  Their life is messy too, and they have plenty of dark days.  But it appears that that through those dark days, they are able to better appreciate the light. They love each other on a level that may not have been possible but for the dark.

My son Kohl does not yet walk.  He does not yet talk.  He does not yet sit up unassisted.  He rarely makes eye contact.  I have never played catch with him.  I have never even had an actual conversation with him. And I may never get to do any of these things with him.  My relationship with my son is complicated to say the least.  But one thing my relationship has given me is perspective. I love him, his sister and my wife on such a level, the depths of which I may have never known.

And that’s what it’s all about.

“What the fuck?  Five percent?” — Reuben Leonard Chrestman III [on his decision to cast his first third party vote]

Politics is rarely a topic of conversation in our family.  Any discussion of ideologies or political candidates almost always gives way to more important topics like friends, family, sports or detailed discussions of the various foibles of the members of our clan.

We often discuss Reuben/Dad’s curmudgeonly disposition and complete abhorrence of social interaction.  We comment on the irony of  Mary Ann/Mom being his polar opposite with her keen interest in people, penchant for asking overly personal questions of complete strangers and subsequent inability to hear their answers.  We all overtly and covertly revel in relentlessly pestering Sarah/Wife just to illicit what is, 99 percent of the time, a hilariously angry outburst.

But politics is usually left alone because we all fall on different segments of the ideological spectrum, and the rare political discussions usually involve some ridiculous comments, some eye rolling and quickly changing the subject. Moreover, no one ever listens to me or generally takes me seriously in the first place.

So it was with utter surprise that I got a phone call from Reuben immediately after voting.  “Your mom and I followed your advice and voted for that third party guy [Gary Johnson].”  He sounded genuinely excited about his vote, like he was part of the revolution that would soon gain traction.

That excitement quickly faded, however, as we decided to grace him with our unsolicited presence to watch the election night coverage, ruining his planned evening of peace, quiet and freedom from hearing the drivel of talking heads.

“That guy’s an asshole.  He doesn’t know shit,” he said of NBC’s Chuck Todd, one of many political pundits that made fools of themselves Tuesday night  as their prognostications and polls proved that they do not, in fact, know shit.

“Yeah, Chuck Todd also looks like he exclusively wears tighty whities,” I added.

“That’s just weird,” my wife Sarah observed.

Reuben’s depression became more palpable as the night wore on not just as it became apparent that Donald Trump would be our next President, but also he began to see how meaningless his third party vote seemed to be.

As polling in one state showed a third party candidate with an unusually high five percent of the vote, that was noteworthy enough to get a mention.  Reuben, however, was not impressed.

“What the fuck?  Five percent,” he asked me angrily as if I needed to explain. “That’s the last time I follow your advice, ass hole.”

True, I am an ass hole, and you’d probably do well to generally not follow my advice.  And while I may have lost Reuben, I stand by my decision to vote third party.  Here is why:

1. That’s how a democracy is supposed to work: I believe that in our free, democratic society, you should not only vote, but vote for whomever you want to vote for.  It is that simple.  You shouldn’t feel obligated to vote for candidate (a) even if you happen to like candidate (b) better but are afraid of wasting your vote because candidate (b) has no statistical chance of winning.  That may be true right now when third party candidates have stood no real chance of winning any presidential election, but who cares?  That mentality of not wanting to “waste” your vote and, as a result, feeling pressured into voting for someone you do not like as much just because they are the Republican or Democratic party’s nominee is bullshit.  I poop on that idea.
2. There’s no such thing as wasting your vote: And speaking of ideas I like to poop on, the idea of wasting your vote is stupid. Actually, not voting would be wasting your vote, and to the 49 percent of eligible voters that did not bother, I hope you had a legitimate excuse.  If not, take a knee and punch yourself in the face.  I have a theory about this year’s election that there are a substantial number of Americans that, in their heart of hearts, liked someone else on the ballot better than Donald Trump or Hillary Clinton.  But because they felt like they would be wasting their votes, they held their noses and voted for one of the two of them that they hated less.  That’s bullshit, and as long as people keep doing that, the status quo will continue.
3. The Democratic and Republican parties are a joke. The party nominations over the last several presidential election cycles have gone, in my opinion, from bad to worse with this year taking the cake.   One party’s nominee committed an offense that would have gotten anyone serving in the military discharged had they committed that same offense. Yet, she suffered no repercussions in the ultimate shit sandwich of political elitism, double standards and hypocrisy.  The other nominee and now president-elect is a pathologically lying, narcissistic turd who looks like a spray-tanned scrotum with a bad combover that has divided this country even further at a time when we really need it to come together.

So you can be like Reuben and dismiss my sage, political advice.  Or, if you are like most Americans I talk to, you are also completely fed up with the Democratic and Republican parties.  To you, I say, during the next election, vote for whomever you want to vote for with no considerations of wasted votes, which candidate that stands the most chance of winning, or any other bullshit.  Just vote for whomever you want to vote for. If that’s the Democratic or Republican nominee, fine, although for many of you I bet it won’t be.  Heed my advice, all of you, and maybe, just maybe a legitimate contender who is not the Republican or Democratic party’s nominee will emerge.  And you will have me to thank for essentially saving our republic.

I will end this rare, political rant on a positive note. As I dropped off my two-year-old daughter at school the morning after the election, we were having an in-depth discussion of her favorite color, which shifts with the direction of the wind.  But on this particular morning, she quickly informed me that her favorite color was purple without taking her usual moments of deep thought before answering the question.  Someone later pointed out that purple is the combination of red and blue which, to me, was earth shattering.  Amelia was clearly making a political statement that now, more than ever, we as Americans must come together.

I would adopt this poignant observation as my own.  I would assign much deeper meaning to what my daughter told me and paint her as a pants-shitting, booger-eating little Confucius. I couldn’t wait to tell my wife.  She would be so impressed not only with the wise counsel from our two-year-old but also with my ability to correctly discern the undertones and sub-text of her statement.

Me: When I dropped off Amelia at school today, I asked her what her favorite color was, and do you know what she told me?

Sarah: What?

Me: Purple.  Do you know why that’s significant?

Sarah: Yeah, it’s the mixture of red and blue.  That’s why I wore purple today along with most people at the office.  Everyone knows that.  Dumb ass.

Yep.  She was impressed.

Dear Stay Puft Marshmallow Man,

Well, we had a nice run this year, didn’t we?  For the last 26 days, you have graced our tiny front yard with your humongous presence.   I know that not everyone in this gang was on board with you, and I’m sure you were tentative about coming here because of my wife Sarah’s well-known reputation within your community of decorative yard inflatables. Her hatred of your kind is well-chronicled.

It began some years ago with some snooty comments any time we would pass by other yards filled with your people.  “Those are so tacky,” she would say.  “I just don’t understand what possesses people to put up those stupid inflatables in their yards.”  I was troubled by these comments and thought, maybe, that if she had a yard inflatable of her own, she would come to accept you.  I could not have been more wrong.

In fact, those comments escalated to outright aggression when my father and I elected to welcome Bob, Carl and Dave to the family last year to help us celebrate Christmas.

Despite the fact that neither Bob, nor Carl, nor Dave ever did a thing to Sarah, snide comments turned to offensive gestures when she flipped them off on arriving home and discovering their presence.  The mean-spirited comments, stern eye contact and outright hatred being spewed towards Bob, Carl and Dave during that time was a real black eye on what is supposed to be a season of joy and thanksgiving.

That brought us to October 2016.  I thought that almost a year of introspection and reflection would have produced a kinder, gentler Sarah.  A Sarah who judges based on character rather than appearance or the fact that one happens to be a yard inflatable.  It would appear, initially, that Sarah had not moved past her hatred, however, as I sensed a little bit of resistance from her when she met you for the first time:

The pain you felt at Sarah not accepting you was as transparent as your beautiful, marshmallowy skin.  You showed a consistent refusal to stand erect requiring almost nightly tinkering, but also allowing me to amuse myself in setting a new record for using the word “erect” in a 26-day period.

You even tried to make a run for it one particularly windy night when I received a frantic message from a neighbor that you had attempted to roll into the street.  Those were dark days for you, and I can only begin to imagine what you must have been going through.

But despite these early setbacks, you came around.  You took the high road and, on Halloween night when it counted most, you stood tall in 13-feet of inflatable glory.

And you know what?  I think it may have worked.  To say that Sarah has welcomed you with open arms, I think, is a stretch.  But I believe we are moving in the right direction. In time, I’m confident that she’ll come around.  I’m confident that over the next 300 or so days, as you lie deflated and stuffed into a tiny white garbage bag, she will continue to grow and that maybe, just maybe, she’ll love you as much as we all do.

Until next time, Marshmallow Man.  It has truly been a pleasure.