If you know me, you know that I love movies and, to complement that love of movies, I listen to and also love The Big Picture, the esteemed podcast from The Ringer with hosts Sean Fennessey and Amanda Dobbins. I do not miss an episode and, on occasion, I even listen to them discuss a movie that I have not seen. In fact, that frequently happens because getting to the theater is hard. I really have to carve out time, arrange for someone to watch the kids, and then, hope that what I want to see has not left theaters during the weeks it took me to secure said viewing time.
I was listening to such an episode (one in which the hosts discuss a movie I haven’t seen) in October, when Sean interviewed the writer and director of If I Had Legs I’d Kick You, Mary Bronstein. To help out, here’s the one sentence synopsis from IMDB, “While trying to manage her own life and career, a woman on the verge of a breakdown must cope with her daughter’s illness, an absent husband, a missing person, and an unusual relationship with her therapist.” The connection I feel to this movie (I still haven’t seen it!) and its writer/director is that Bronstein’s daughter had a serious illness and Bronstein played caregiver for a long, hard time. Okay, let’s go to the interview.
Right out of the blocks, Sean asks, “Do you remember the exact day you began writing it?”
Bronstein gives a long, eloquent answer, but one thing she says hits me so hard, some truth that I had felt before I listened to this pod, but a truth that was really good to hear someone else utter, especially an artist. Bronstein answers that she had a “sense of existential dread that I couldn’t put my finger on and, at first, I thought it was because the situation I was in, like, will she get better? What will happen? Then I realized it wasn’t that at all. It was the feeling that I felt like I was disappearing, because everything, every part of my being was put into taking care of her and making sure that she was gonna get better and we could get back to New York and get back to normal. But then I realized, oh wait, she is gonna get better and we are going to go back to New York and our home and it is going to go back to…normal. But like what then? What then? Because I’ve been in this state now for so long…in this caretaking role for so long it’s been my whole life, what then? What’s gonna happen?…In a very literal sense I felt myself disappearing, my being, my self, and I started writing…in that state.”
That’s the quote. And if you’ve been a caretaker for someone before, especially of a child with some disease, disorder, or illness, you know that regardless of the severity of that disease, it can be all consuming and it can completely suffocate the will you have to do anything else with your time, if you’re lucky enough to have any time leftover.
Although I didn’t realize it then, my time as a caretaker started nearly 12 years ago when my daughter was born at 26 weeks. She had, at times, a very rough NICU stay that lasted 109 days. After discharge, we were back at the hospital several times a week for appointments. That lasted months. Years later, we still had a lot of appointments, assessments, and scares. Then after teachers expressed concern, more assessments, a diagnosis of Autism Spectrum Disorder, Level 1, and new, ASD-focused, home therapy for years. Then another diagnosis, this time of ADHD, a common dance partner of ASD. Then individualized education program (IEP) meetings. Then 504 (not quite as accommodating as an IEP) meetings. Then more worry. Then back to an IEP.
All that time, much of my interests were pushed aside, as happens to any present parent, and I let worry for my daughter and her future absolutely break down hope I had for myself, belief that I would get to do anything else. I felt myself disappearing. There were fits and starts with writing, but I have gone years without it. Actually, the only thing that I have consistently practiced for the last 12 years, outside of managing the house and taking care of the kids, is running. That’s the one thing I have held fast to. I guess that’s why it became an obsession of mine, which if you don’t know, we haven’t spent much time together in the last decade. But trust me, if you stick around here for any length now, you’ll know.
Anyway, back to myself disappearing, dissolving into worry and insignificance. I started to hear a voice, my voice, and it has been urging me to make sure this part of me, the one that has always loved the written word, both reading and writing it, to make sure that part does not die like all the other parts. To save that part, that’s the end game, if you will. What will come of it? I am not sure, nor do I want to dwell on that either. I know it’s a big part of me and one worth saving, one that makes me a better person in my other roles of husband, dad, and son. But you’re still gonna get running posts and don’t forget movies. I love movies.
What have I found to be helpful?
d oxygen tanks in the car, in the stroller, in my backpack, I always knew the baby was getting oxygen. In the rare case my baby looked a little winded or was turning blue, all I had to do was walk over to the giant oxygen tank in my living room and let her loose up to 1/4 flow. Baby turns the right color, but falls asleep right before it is dinner time. Not to worry. This is why there is a nasogastric tube, feeding at the right time is always an option.
the FoCo dad 