thinking with victor (attempts at an ancestral practice)

Sorry for the late post. My body really got the better of me these last two weeks. 

Sometime this past spring, my therapist and I were talking about (my) internalized ableism and how it is that I came to know disability and what it means to be disabled. “Who have been your examples of disability?,” she asked me, or some question like that. This led me to think about several family members (including my mother and my mother’s brother, my uncle, both of whom have the same autoimmune disease as me). Then a few months later, I came to think about Victor.

Victor was my cousin. He had been born with sickle cell anemia. He eventually died of complications in early 2000. He was 32 years old at the time. I was 7, just a month away from my 8th birthday.

I felt tremendous guilt when I eventually thought of Victor and realized that it had taken me so long to think of him, that I had forgotten to think of him, that I had forgotten him in relation to this important, emerging part of my life. That maybe part of me had just forgotten him.

I never talked to Victor about his illness when he was alive. I always knew that he was chronically ill, to the degree that I understood chronic illness at that point in my life, and I knew that meant that sometimes he was too sick to get out of bed and sometimes he had to go to the hospital, things that when they occurred I viewed as tremendous inconveniences. Because there was always so much for us to talk about, to watch, read and make together, anything that impeded on our hanging out was an inconvenience, and his disease was more often than not that thing (“adults” and their schedules were usually the other thing). This is very much the way I view my own illness now: a tremendous fucking inconvenience. And part of that maybe that’s because this is the way I came to understand illness as a child through my relationship with Victor? Or maybe that’s how I remember feeling about Victor’s illness because it’s the way I feel about my own now? 

It’s difficult for me to trace out cause and effect because I guess the truth is that I don’t really remember Victor. Or maybe I should say that it’s not that I don’t remember him, but that my memories of him are not really memories, but something else that I don’t yet have the language to name. Something more like what the equivalent of wisdom to knowledge is, but to memory. Something deeper, more embodied (in the body), more sensual than what I typically think of as memories. They are abstract and unreliable. Settings often change, I can never remember what age we were at the time or who else was with us. I often remember myself saying things in a way I might say them now, but of course I was a child back then. And crushingly I remember almost nothing of what Victor himself said. For some reason, he is always silent in my non-memory memories, which is crushing and ironic because many times throughout my life since he died, even before I got sick, I have thought to myself I wonder what Victor would say about this? Because see, Victor seemed to ask questions about/of life that no one else in our family seemed to be asking, and when I came to want to ask some of those same questions, I didn’t know who else to ask them to. When he first died, people told me that when I prayed I could talk to him whenever I wanted. I used to do that a lot. I also wrote songs for him that I would perform to my friend Kelly on the playground during recess. (Lord have mercy!) But he never responded. Which honestly, I think I knew would be the case. Like I don’t think I ever really believed that the praying would work. Like I knew he wasn’t going to respond back to me, at least not in words. But I guess a part of me did hope/believe he might send a sign. Maybe knock one of my beenie babies off my bookshelf or something. But no sign ever came, and eventually I stopped talking to him. And that’s when he died for the second time.

But all of this is essentially a long-ass winded way of prefacing that lately I’ve been trying again/anew to find ways to communicate with Victor because it feels like I need to, like there’s something I need to say, or maybe there’s something I need to hear. Or maybe what I am trying to do this time isn’t so much talk to him as trying to think with him, to ask questions of/about life (living disabled) with/to him. So, to that end, I’ve been trying to open up a space of co-creation – a meeting point for study? – by revisiting things we made together in the past and the conditions in which we made them. 

I can’t go back to grandma’s house where we used to spend all of our time together because they sold it not long after she died. So instead, I look at this photograph I took just before it sold (with a sepia? filter circa 2010) to help locate me:

Auntie kept most of our art after you died, so I had her send me pictures of some of it, including our paper angels, which she keeps on the top of her bookshelf, kind like how we kept them on that random shelf above the doorway in the breakfast room. They seem to like being up high. I try to spend some time with their photographs every day, but it ends up being more like 2-3 times a week. 

And finally, I’ve been (re)watching the PBS documentary on Calder that you showed me. Calder was your favorite artist. So you showed me this documentary and then we made our own mobile out of cardboard, string and a wire hanger, which Auntie has too. 

 

A few weeks ago, I sat down and rewatched the documentary from start to finish. Afterwards, I drew for about a half hour. Since then I’ve been letting it play in the background while I sit, sometimes at my desk, sometimes on the couch, with my notebook and a pen and draw. I try to draw quickly – just a few seconds on each page – to stop myself from (over)thinking too much. So there’s room for you to come in if/when you want to. I don’t know if you have yet, but I think imma keep at it. 

Here’s some of what I/we’ve made so far:

And here’s my favorite picture of me and Victor. I love it because the way we are looking at each other across the table, it feels like/reminds me we were (always) already communicating without words.