My Pain Made Me Multidimensional

by Valerie Ivy

My husband resents me.

He, (Charles), won’t admit it because only a “bad” person would resent their partner for being disabled. Charles is pretty good at knowing what CC, “Cutout Charles,” should feel. So while CC “definitively does not resent me,” he does think me a hypochondriac, as does Charles. I fear my son is heading there too.

Okay, I did use Dr. Google – just a smidge – because I’m still “infected,” despite finishing my antibiotic ration. But don’t worry; I realized I will die of cancer within 48 hours roughly six years ago. This is when exhaustion, pain, depression, brain fog, skin tenderness, anxiety, diarrhea and vomiting, (yes, usually at the same damn time) debilitating nerve pain and general all-over body annoyances, became my pain, no longer orphaned.

Because it is mine. It is not something I can share with Charles, or CC or my son, Royal, no more than they can share theirs with me. It’s one of the few constants in my life and I fear I may actually love it. Wow. Am I in love with my pain?

I breastfed my son for 14 months until he and I both were done. Weaning was easy, potty training was easy—my son is a very “easy” child in most respects. So many people made sure I knew this, usually through comparisons to their pants-poopers and nipple-demons. But Royal can be quite needy of his mother specifically. And I am his mother, but I am also a person who needs to sit in her own thoughts. I try my best to be present. No, that isn’t even true. I should be more present.

My pain restricts many of my desires and needs. When I do have the patience or focus, the selfish researcher in me wants to hide in the garage and fall down various rabbit holes, the latest being New Jersey and Pennsylvania’s abundance of teak midcentury-modern furniture. (You know teak cannot be currently harvested, right? I do. I know quite a bit about teak wood now actually.) There is so much information out there, but not enough for me to have my very own diagnosis.

For example: are my depression and anxiety secondary to my physical conditions, or are they the cause? Or is it really some sick circle-jerk where nearly everyone, except fatigue over there, is just trying to finish? I did notice, fights with Charles, (and with CC to an extent), mean stomach problems for several days. But also, there are times there is no noticeable trigger and I am just sick.

I know Charles dreads answering my 10 a.m. phone calls. I know because he waits until the. Very. Last. Ring. These are the ones where I’ve tried muscling through the morning with Royal, but call, needing my husband to leave work and “come home right now ” And once COVID-19 shut down Royal’s school, I was on the line at 10 a.m. a lot. I know CC makes Charles answer.

Just between you and me, even without my disabilities, I would make a terrible stay-at-home mom. My son needs chatter and noise. He needs outdoor activities and exercise and laughter and kids, other kids. I need too wander around inside my own head and enough connected minutes for the hike. So, I found him the absolute best school for his personality and interests. It’s a forest school, where an arboretum is his classroom and mud his medium. I shudder imagining our life without them and the scholarship (see?: research), as Royal is thriving with them.

At first, I got away with just saying “nature-based learning,” when family and friends raised eyebrows at me, a woman with little means and no job, pawning her child off during the week. Now, I offer no explanation. This is simultaneously liberating and like sounding an internal war drum. My own cut-out, VC, I suppose, would over-explain but therapy is teaching me better. Another bonus of Royal’s school is when he comes home, I am usually ready and waiting to receive him. I am here, present.

If I get my very own diagnosis, I also get my very own prognosis. Charles needs this more than I do: he is a fixer but he cannot fix me. I learned to keep my expectations low when it comes to doctor visits, labs and imaging. I wouldn’t go so far as to say I have “actualized” (what does that even mean, really?), but I have adopted my pain, absorbed and accepted it as part of me. Maybe that is what I meant by in love; I no longer fight it? Maybe it is more like Stockholm syndrome. Seriously though, I own my ailments so well, when I experience a new symptom, it is hard to stop myself from overexplaining the sensation to Charles. CC nods. Charles rolls his eyes.

Until my diagnosis falls from the sky, or manifests itself in list form or some other tangible way, Charles may continue doubting me, resenting me. I’ve grown fond of CC though and will miss him if he goes.