I’ve been trying to write a blog post for the past week, but all that comes out are the ramblings of a crazy person. It’s been so hard to collect my thoughts, and I’m not sure I’ve done it here successfully at all.

Case in point, I’d like to start with a completely random digression. I’ve known a few crazy people in my life. The woman in my college town who yelled at canned goods in a bus stop alcove. The guy in the same town who used to stand outside the bagel store in his Delta Gamma sweatshirt (according to him, he was a member of the sorority), hassling frat guys and flirting with girls. When I went in to grab a cup of coffee and a bagel, he would sit with me and talk about his upcoming wedding, which was probably imaginary. But it was a welcome break from studying. Everyone called him Scanner Dan, I guess because he used to count things. Dan was short, bearded and far older than the average person that I encountered on State Street. He would sit across from me at a round table, his grubby fingers and greasy hair setting him well apart from the rest of us. Still, he was a part of the college experience. The word at UW Madison was that there was a psychiatric hospital across the lake and that when people got out and went to halfway houses, some of them just started hanging out on campus. It makes sense, I suppose, and is probably something I could confirm with a quick Internet search. But there are crazy people everywhere. Anyway, I don’t think I’m one of them, I just think my latest unposted blog efforts have seemed a little… unhinged.

Part of the problem is that I was trying to write about my experience watching the Gleason documentary last week. I had so many thoughts during and after the film, but they wouldn’t coalesce into anything particularly readable. You could tell that I was fueled by an insane level of emotion, but wasn’t really utilizing my normal tools, like punctuation or linear thought. I was—still am—overwhelmed.

I loved the movie. It was hilarious at times, which I hadn’t necessarily expected. Of course it was heartbreaking. It was thoughtful and thought provoking, beautiful and devastating. There is much to talk about, but what I have been obsessing over for the past week is the idea, and realization, of a marriage that turns into a caregiving situation. The intense and terrible ways in which that changes the playing field. The things that will never be the same, and the psychological difficulties of accepting that.

Gleason, for those who don’t know, is a documentary about former New Orleans Saints football player Steve Gleason and his family in the aftermath of his ALS diagnosis in 2011. Sorry, let me try that again. An amazing documentary about Steve Gleason and his family.

The movie opens in select theaters across the country on July 29, and everyone should see it. We—that is myself, my sister, her husband, and their three month old baby—had the privilege of watching it in San Francisco at Premier Theater in the Presidio. Rob was, very unfortunately, out of town. If there is one person I should have seen this movie with, it is definitely my husband.

Marriage is supposed to be a union, but the struggles of being a caregiver/spouse and the struggles of being cared for are divisive. Steve Gleason and his wife Michel Varisco do an admirable job of managing despite his illness, but the difficulties are obvious. And they are shown honestly throughout the movie. In one scene, the couple lies in separate beds, and he says to her using his computer that he feels like she has no compassion towards him. Like she rushes everything, and doesn’t even look at him. She apologizes, but she’s tired. He asks how he can improve. She responds that she is the one who needs to improve. But (and now we’re back to my own words) the situation is unreasonable. How can anyone improve it?

When a caregiver is burned out from the physical and psychological load of this disease, their sick partner still requires more of them emotionally. The person with ALS needs more than just their physical needs met. Those things seem basic, they seem like a minimum in what was once a complete, an equal, relationship. But for the caregiver who is expending all of the energy and doing all of the work, handling the physical aspects is so exhausting that they often have nothing left to give.

Michel calls ALS a mindfuck and a motherfucker. Her language throughout is divine, and I mean that with zero sarcasm. There is Steve on the screen, playing football, walking and talking. And there he is again, doing a Microsoft commercial, controlling a computer with his eyes, There he is, talking to his unborn son with a voice just slightly slowed. And there he is, using a computer to ask his wife to put their growing child in his lap. This passage of time on the screen, this incredible depiction of a family going through something that most people would consider unthinkable, what Steve and Michel have done through their foundation, alongside all of the wonderful people at Team Gleason: it’s all a mindfuck. Are we sad for them? Of course we are. But we’re also so drawn in and impressed and grateful. It’s enough to make anyone feel a little bit crazy.

Please consider donating to ALS research. #whatwouldyougive

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