A recent fall walk to visit Jacob Two Tress, the troll. (Thanks to Susie and Richard for hanging out with Ida, who would not have been happy with the length of our walk.)

I have been avoiding writing about Lucas and his care here in part because I think (I fear?) that my family will get sick of me writing about them. Over the past year I’ve been proud to publish my writing about my unique path and learnings as a parent, but that ends up making Lucas — and sometimes Burke and Ida, too — into supporting characters for my own plot and drama. It’s a weird thing, being a writer of such personal material. I’m sure it’s even weirder to be a family member of a writer who writes about family. (I think there’s a maxim out there about not marrying a writer… good thing Burke and I still aren’t married!) Here is my attempt at writing about having cancer and our family, trying to tell some of my and our story without attempting to tell their stories.

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I often think about the idea of interconnectedness. I think disability scares people because of the way it forces us to admit our interdependence. I always use the word “interdependence” – maybe because it is a political term, maybe because at a macro, society-wide level, we all depend on each other. Raise your hand if you can get rid of all your trash, clean your own poop water, make electricity, manufacture all your own medicine and build your own shelter while growing your own food? We humans need each other, and not just for our physical survival.

But disability also makes you dependent. Sometimes needing more than you can give. “Interdependence” feels like a glossing over of the fact that Lucas’s body is utterly dependent on the hands and arms and bodies of non-disabled people to get through the day. As a giant human (and non-human) family, we are interdependent, but in smaller groups, some of us rely more on others.

One of the hard things for me about recovering for surgery has been letting go of doing so many physical tasks our family needs. I’ve managed to figure out how to cook and get dressed and even make the bed one-handed. With one hand, I can read to Ida, pick up the detritus of her endless “art” projects around our house, and even, with her help, clean the cat’s litter box. But, often, I cannot help Lucas. I can’t even adjust his head one-handed. I can’t lift one of his hips with one hand and slide a pillow in under his butt with the other to relieve pain. I can’t help him with food or bathroom or bathing or getting dressed – the ADLs, activities of daily living. (For those of you insisting that we ask for more help — I tried. We have tried. And his needs are so specific that I couldn’t train someone on the fly or even in a day to do these things.) Fortunately we have nurses most days. But mostly, we have Burke.

Burke is doing his full time job while also meeting all of Lucas’s needs from 5:30pm to 7:30am. I am committed to not making Burke a side character here, so I’ll let him tell you about that if he wants. (I keep starting to type my observations, and then deleting!) It’s hard to just tell my story when we live in a family that relies on each other. MTM and now cancer feel like a collective experience, even as they are housed in individual bodies. My experience: physically, it is easier for me to be a giver than a receiver. Burke does so much for me and our kids physically, already, pre-cancer. Now it is even more. I hate needing to ask Burke to do my laundry when he’s also done the dishes and changed Lucas’s clothes. (Burke is trying to de-incentivize my doing physical tasks by giving me nasty side-eyes, sometimes with a growl, like when I try to do the dishes.)

I guess I am saying I am grateful for Burke. Of course grateful for each and every one of us, disability included. But right now, as post-op renders me physically dependent, I am grateful that Burke is so physically able. So able to support us all.

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We have scheduled Lucas’s major surgery for mid November. I am also grateful to be healing so quickly, glad I will be able to care for Lucas’s body again by then. Grateful that I have so much support in healing so that I will be able to physically support Lucas through this. Hopeful that the surgery relieves some of the pain he deals with.

I met up with a friend yesterday for a walk and she teased me that it’s hard to get a slot on our meal train. That’s on purpose. We don’t want food to go to waste (one of the fastest ways to really irk Burke), and we also knew we would be needing a lot more support soon. Lucas’s surgery will be November 14. We’ll need food delivered, maybe to our house, maybe the hospital. We’ll be reaching out to see about Ida overnights at your houses. We don’t know how long we’ll be needing support, but it is likely that Lucas will be hospitalized post-op for a few days, and probably home bound and needing a lot of physical care through all the winter holidays. We may need people to come to us. Also, we’ll have nurses, and so we may all need various breaks from nurses and each other as we figure out how to care for Lucas’s post-op, healing body. We’ll need calls, texts, back rubs, days in the outdoors to remember the world outside our healing house goes on.

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I keep thinking about how to write about Israel and Gaza, doubting I have the right words. I am devastated by the violence, going back to the Holocaust, and to the displacement of so many Palestinians in 1948, to last weekend, to what feels like a coming (or ongoing) genocide against the people of Gaza. The killing of so many people, particularly children and elders. Every time there is war, I think of the people like us who cannot flee. I say “us,” even though I have been told by some disabled people that they don’t like parents using the “we” to talk about disability in a family. But when I am told to prepare for natural disasters, or if I imagine us in Israel or Palestine, I think about how we could not easily hurry Lucas anywhere. How a 24 hour notice to evacuate would mean nothing to us, to a family that needs electricity to survive. I started to listen to yesterday’s The Daily, with interviews with two people in Gaza. It is a good podcast — please go listen if you have capacity. But when one of the interviewees in Gaza started talking about caring for elders who cannot get out of bed while missiles soared, I broke into sobs. I hate being a citizen of a nation that is part of the problem. That is arming one side while dehumanizing the other. I do know that our vast interconnection is real, and that some of us are more dependent and vulnerable than others; I feel it all in my bones. I feel heartbreak that pours love out, across the oceans, to my Palestinian and Israeli siblings.