I majored in anthropology in college and then went to graduate school for the same. I was primarily interested in biological anthropology, although there was no such differentiated major as an undergrad. At that time (and probably still now, although I don’t know, I haven’t paid attention for over a decade) the “four field approach” was key. Every anthropology student at all levels had to be proficient in cultural, physical (biological), archaeological, and linguistic anthropology. Every grad student had to be able to teach all four at the intro level. As an aspiring academic, I did just that. I even taught at the medical school as a lab assistant in the gross anatomy lab for a couple years, a thought that crosses my mind every now and then while looking at the usually 20-something year old medical students and residents and even the attending physicians and look up their bios and do the math. Were any of these people ever my students? Probably not. CHOP doctors don’t generally come from that school. I know because I read their bios. Medical school is probably its own liminal state.

I’ll skip the discussions of Victor Turner and the origins of the term liminality. I cannot discuss the theory. This is not an academic paper. I couldn’t write one of those anymore if I tried. I’m very far out of the academe. This essay is about my own liminality, and Shawn’s, as we are experiencing it right now.

So lets just stick with good old wikipedia for a definition. Because we’re being intentionally non-academic. And it works.

Liminality (from the Latin word līmen, meaning “a threshold”) is the quality of ambiguity or disorientation that occurs in the middle stage of rituals, when participants no longer hold their pre-ritual status but have not yet begun the transition to the status they will hold when the ritual is complete. During a ritual’s liminal stage, participants “stand at the threshold” between their previous way of structuring their identity, time, or community, and a new way, which the ritual establishes.

My academic friends have used this term more than once when reading my blog posts and when we’re chatting about what’s going on. My elevator post sparked the most discussion about the topic. Because what can be more transitionally ambiguous and disorienting than being literally in between floors in a pediatric hospital? There were times that I got off on the wrong floor or pushed the wrong button simply because I was distracted and couldn’t remember where I belonged on that day or hour.

I’ve also told people that when we’re at CHOP I sometimes think that this is what a foster kid might feel like. No matter how spread out we might be in a room there, if they tell me we are moving rooms or floors, I can pack all of our stuff up into two bags in less than five minutes and carry it to wherever we’re going next. And sometimes I have to do it faster than that.

The current plan involves trying to keep us at home as much as possible so that Shawn (and presumably the rest of us, too) can live a “normal life”. But even home doesn’t feel like home. Bill and Lilly physically moved us into this house in October while Shawn and I watched via text messaging and FaceTime. And in this house, we sometimes have a lot of fun. But often “sick” takes over. This house is good. It’s our home. But it’s not our “normal” lives. And we lost our cat.

This week I was CCed on a letter from Shawn’s primary neurologist to his primary care pediatrician, summarizing an outpatient visit but also telling her that Shawn will now be followed by a doctor in neuro-oncology. This was not new news to me. We’ve had these conversations for many weeks. I know all these doctors. I trust all of these doctors. But it’s inherently disorienting to be transferred to oncology without an actual diagnosis and treatment plan. I’ve said before, too, that I will probably be one of the few parents to feel relief when given such a diagnosis. We just need a plan. Right now we are in no department. No one knows what to do with us. In that elevator post, I wrote about the parents getting off on the oncology floor looking the most tired and haggard. If those are my people then let me be with them. Let’s meet the kids there. Let us structure our time, identity, and community in a way that makes some amount of sense and provides some sort of structure and home. Because we certainly don’t have that now.