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.
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.