Love and Footnotes
I fell in love with Joe because of his mind. It wasn’t sexual or romantic, or I didn’t recognize it as that for quite a while, because we bonded over books. It was…academic. Analyzing stories, comparing our lives to the narrative, admiring passages that spoke to us. Literary nerd stuff. He taught me to write in the margins. Underline, highlight, doodle. The book is part of you now. Up until that point books had been sacred to me—I didn’t fold a corner, or dare put ink to page! I also primarily used the library and there was no marking up those copies. But once we started mailing our own favorite books back and forth with each other’s marginalia, the texts surpassed sacred. I’m not sure what the word is for that. But This Boy’s Life, A Moveable Feast and Tuck Everlasting are just a few that became part of the Us that would burst into bloom months later. Somehow, miraculously, all three of those survived the fire we had 2018. Now and then I page through them and try to have conversations with the people who freely expressed themselves among those other writers’ words. But a lot has happened since then and I sometimes find it hard to connect to where we began.
Right now Joe is napping in the hotel room adjacent to mine. I just spent about thirty minutes swimming and fifteen soaking in the jacuzzi. Took a hot shower and used this incredible woodsy-scented sugar scrub a friend gifted me. Put lotion on my hotel-parched skin. Popped an anti-anxiety pill. It’s been about four months since I’ve had as much as an hour to myself. For someone who thrives in solitude, who relies on her mind and writing to make sense of everything, this is akin to locking Jim Carrey or Britney Spears in a dark closet. While I’ve had some mornings here and there when I wake early and pour a coffee and meditate on Wordle for a hot minute (wtf whiff), my mind has still been completely consumed with worry, planning, unplanning, and that alertness that only a caregiver knows—when you are pretty sure the baby is crying or that was definitely the sound of throwing up or is someone calling my name again? Being a competent mom or taking care of a loved one who is ill thrusts you into a constant state of hypervigilance that not many people can see. It’s an invisible, thankless role, one you feel just as equally privileged to do as completely dried up from doing. I deeply miss the days when my husband asked me if I was okay.
This is Joe’s last week of chemoradiation treatments, eight weeks total, and this is the first time I had to get my own room. He’s up half the night from restless legs, constant spitting from the radiation sloughing off the tumor in his esophagus, and lately a lot of coughing and gagging. It can be tortuous to witness, and even more agonizing simply staring at the ceiling, waiting for the next bad spell. Last week, one night I was still wide awake until after four. I don’t need a ton of sleep every night—6 or 7 hours is perfect. And I was sleep-trained well at twenty-four when I had an infant and a one-year-old, so I can function for quite a while without great sleep, but eventually it catches up. I get really cranky (that’s a nice word for it) and I’m no good to anyone after that kind of sleep deprivation. I know this from that same era of babies. And so this week I got my own room so I could sleep. As we head into this final week it’s honestly all I can do to keep myself going, especially considering even when the treatments are over the side-effects continue. He feels the same. He is so done. He’s not an easily defeated person, so it’s difficult to see him like this.
He’s lost his body to weakness, his mind to fatigue, and he says if he had to live this way forever he would choose not to live. An awful thought, but I assure him this part will not last forever, words I say out loud for me as well, because I totally get it. Losing yourself, especially as a person who is physically and mentally active all the time, is terrifying. We are both people who have reinvented ourselves a few times, and thrive on finding new outlets, ventures, places and people, hobbies, homes. I imagine he’s disoriented a bit—he’s lost the swirling creative ideas and worlds that normally consume him. Be it books or games or lesson plans or his own imagination simply off on some internal adventure, his mind is never still, and that has protected him throughout his life in many ways. He’s been blamed for being too lost in a fantasy world, but I tell you, it’s a gift. If more people saw the world the way Joe does, we would have a better world. But right now, that gift, that self-protection, has been completely stripped from him and when I look in his sunken eyes I can feel that wall crumbled, swept away. He is at his most vulnerable with me right now. His most raw. A lost boy.
And I am the opposite.
My mind is also never still.
But I am shored up.
Armored up.
Awake, up.
I get up, I get everything, I do everything. I am everything.
I feel guilty taking the time to write these words because for all I know he could be getting sick in his room, alone. And because I know how fragile he feels right now, it makes me feel like I should be at his side continuously. My eyes should never shut. But I cannot without sacrificing my own strength because I am also worn down, even while on watch, and need to keep myself intact to help him.
The conflict reverberates on my skin.
I am the type of person to get so attached that I will give myself up for another. I’ve done it before; I am prone to do it again. I guess it’s kind of a love co-dependency. I gave my entire life up to my first husband. When I was a young mom, I completely sacrificed myself to my children. I didn’t know any better; I thought that’s what a good wife/mom was supposed to do. I loved them. It took me a few years to realize that was not the definition of love and I was so much better for them when I had a life in addition to motherhood, an identity outside of marriage. It’s not any different taking care of Joe, I remind myself. I still have a life. While much of it is rightly paused, I don’t have to sacrifice my entire well-being. I’m learning to find the line between this transformational, unconditional love we share and my own Self. So as I approach a new version of my life once more, I think I’m finally learning to retain a bit more of my personal welfare. That may mean a whole new career path in order to gain my own security, or simply my own hotel room for four nights just so I can breathe a little bit. Most likely both.
Joe will get his body and mind back, maybe not exactly in the way he was before, but he’ll be able to wrap himself up in his beautiful, imaginative armor again. He’ll go back to work, he’ll game with friends once more, he’ll keep writing books. I’ll no longer need to be his protection. I don’t know if we’ll ever go back to writing notes in books though. Those days of new discovery are long passed, and we fast-forwarded to the kind of thing we didn’t expect to happen for at least twenty more years. Life is tricky that way, as so many of us learn over and over and wish to talk to our younger selves and say just slow the fuck down.
I look back on those early days of sharing each other in the margins with so much gratefulness; I never thought I’d have a love like that. Like this. Those days when I saw glimpses of the intelligent, gentle man my husband is, and the fierce woman I can be. And in the moments when I feel like I’ve lost everything I’ve worked for, everything we’ve built together, everything we love about each other, I know we will always find ourselves in the marginalia. Love and footnotes will carry us.
And sometimes my own room.