Four years ago today I was on a plane, trying to stay calm. I’d had to throw stuff in a bag and get on an app to find a flight that left a day earlier than the flight I had booked, which was a thing I did in a Lyft on the way to LAX. It wasn’t the plan. The plan was that I was going to fly back to NYC the following day, December 8th, to be there when the hospital discharged my mother into hospice care at home.
I’d spent the last couple of days doing the paperwork and switching her into the hospice network, setting up the team to meet her at the apartment where I grew up, where she still lived, where I now seemed to live more than I didn’t. I’d been coordinating times for a hospital bed to be delivered, buying an easy chair that reclined all the way back and had good reviews so the hospice team could maybe get some sleep here and there, figuring out shifts for everyone. She was going to need 24-hour care in addition to me, my brother and my stepdad. You have to know when you’re beat, and I did.
I’d had a bad feeling, though. My mother hated the bipap machine. That was the machine that forced oxygen into her lungs, and sucked CO2 out. I couldn’t blame her — her jaw was slack because of the ALS, so they had to use a visor and velcro straps to secure it to her face and around the back of her head. She’d been on a ventilator for 12 days before that, and when she came off the ventilator (a thing they weren’t sure she would do at all) her breath was shallow and weak.
She didn’t like the feeling of the “aggressive breaths” being forced in and out of her. She scrawled those words on a notepad — her perfect, Catholic-school-girl cursive a thing of the past. She shook her head at me helplessly, and even that took effort. Her eyes were two huge pools of sadness. She didn’t like the velcro straps, the machines beeping, the tubes everywhere. I can’t write anymore about this right now.
I’d gotten into the rhythm of being back in NYC, sleeping in the bedroom that was mine before my brother was born, spending 12-hour days in the ICU with my mom, who was dying. I’d fly back to Los Angeles for a night, hug my kids, make sure they were okay, and then get back on a plane the next day. It had been going on for a month. I never imagined I’d be taking planes like cab rides, and I did not allow myself to look at my credit card statements or even worry about how I was going to handle any of it, I just did it.
For as far back as I can remember, I’ve longed for my mother. Sometimes I longed for her in a room full of people, sometimes when it was just the two of us talking. As a child I never felt that I “had” her — it seemed like she wasn’t very interested in me no matter how hard I tried to be good or perfect. If I had her attention, it was because I’d enraged her.
We struggled as I got older, because I could see she was in pain. People do not drink like that for no reason. I wanted someone to help her, and to help me by extension. She refused to admit there was a problem. Everyone else refused to challenge her.
There’d been so much pain between us. She was hurt, and she’d hurt me. Then when I receded, as any sane person will do if you hurt them, she felt betrayed. I was supposed to pretend the bad things hadn’t happened, and my inability to do that — and later, my refusal to do that — made her furious. As I got older, that response of hers enraged me.
At the end of her life, none of it mattered. I would have fought an army by myself with nothing but my broken heart to save her if I could have. I tried. It was enough, though, because she saw me trying. Everyone saw me trying. I would have given almost everything for more time with her, because the ALS took every last thing from her, including her ability to drink. Including her ability to rage.
It didn’t happen all at once, the year leading up to her hospitalization was a thing that was so brutal it’s hard to comprehend sometimes. As the disease ravaged her, she lashed out at me in ways that hurt my heart when I think of them. I’m still recovering from it all, four years later.
But the last three weeks of her life, when she could not speak anymore…that was when my mom and I started to communicate in the only language you ever really need. It was the only thing I’d ever wanted or needed from her. I finally had her in that way I’d been longing to have her my whole life.
Three weeks felt like such a short amount of time to have her, and then to have to let her go. I did make it to the hospital in time to be with her the last few hours of her life, thanks to a huge line of people at the taxi stand at JFK who let me cut to the front. Do not ever let anyone tell you New Yorkers are not kind. I still think of those people and wish I could hug every one of them.
For anyone who is grieving or missing someone this time of year, this episode is for you. I will let you know that I had to stop a few times, and there were tears. But that’s okay. You have to let the grief move through you.
Sending love to all, and to my mom, who left this earth of ours at 3:37 AM EST on December 7th, 2021. I miss her every second.
