"Well, well, look who's inside again, went out to look for a reason to hide again." -Bo Burnham

My great-grandma died when I was in elementary school. There was a grief group at school and, though I don’t remember much about the meetings, I remember that I was mostly quiet during them. Until the last meeting when, just as everyone was leaving and we were saying goodbye to the counselor, I burst into tears. She was surprised. I hadn’t shown much emotion until then.

This has not changed much. 

I’ve never been good at sharing my feelings. I used to think it was because I’m a robot and don’t have them, but now I think it’s because I have too many of them. I feel everything. Even little upsets seem to affect me to a degree I admit is TOO MUCH. I cry when other people cry, even fictional people. I feel upset if other people are upset. I get anxious if I know someone is mad, even if they aren’t mad at me. Sometimes it ruins my entire day. 

I’ve always been sensitive, perhaps overly so, which makes it extra frustrating that I also have a hard time talking about the feels flooding my body. I need time to think about them, to nail down what the feelings are, where they’re coming from, and what to do with them before I’m able to talk about them, and even then, I’ll only do it if someone directly asks about exactly what’s wrong. Instead, I retreat into myself, making it hard for anyone to know how I’m really doing (ask Joe, it’s infuriating).

Back when I couldn’t talk, Joe and I devised a simple system for how to communicate when I was upset, and what I needed at that moment. We called it Turtle/Otter. If I was upset or stressed or anxious and I needed a hug or comfort in some way, I signed “otter” to him. If I needed some time to retreat, to pull into my shell, I signed “turtle,” and he knew to give me some space, to let me sit and think. 

The turtle/otter system works well with Joe, but I’m beginning to think I need a new code word or phrase with everyone else. I’m not sure I’ve been altogether honest with everyone about how I’m doing. Not mentally, anyway. I try to stay upbeat, but I’ve been in a pretty deep funk lately. I’m able to get through life on a day-to-day basis, I’m even able to find joy in things, but inside? I’m a roiling mass of sadness and anger and uncertainty and confusion. My baseline, every day, is that I’m pretty miserable about my current situation in life, and it takes a fair amount of effort to dig myself out of that hole in order to put on my Jennie mask and get through the day. And times around big medical things (like my upcoming CT scan) affect me in ways I’m often not even aware of, other than being able to eventually identify, “Huh, maybe I feel bad/sad lately because of SCANXIETY.”

I think I mentioned early after diagnosis that I wasn’t sure how to answer the questions, “How are you doing?” or “Are you OK?” because the real answers are not ones we’ve been conditioned to give. The things I say out loud are “Fine,” or “Yes,” or maybe even, “Not great, but manageable,” but often my real answers are, “Fucking miserable, this is UNIMAGINABLE,” or “How did this become my life?” or “How do you THINK I’m doing?” But I usually don’t say these things. Not unless someone happens to catch me in the perfect moment, one where I don’t mind if I come off sounding less like Pollyanna and more like a Grinch, when I have the mental energy to maybe have a conversation about why I’m feeling that way, and only if I trust that the person won’t respond with a list of reasons why I should be more positive. 

I also have to take into account my tendency to feel others’ feelings, which is why therapy has been such a blessing. I can unload all of these things on my therapist without worrying that I’m upsetting someone. It’s hard enough to sift through my own feelings about everything, but every time I start to imagine what others might be feeling in regard to my situation, I start to spiral and it’s hard to pull myself out of it. So I just leave everything on my therapist’s doorstep like a flaming pile of dog poop, unburdened of my own dark feelings without having to feel anything extra. 

The truth is, I’m not sure there is a way to be OK in this situation. Not really. Joe said the other night, curled up on the couch with me at the end of one of my Bad Cancer Days, that he hoped things were getting a little easier. “No,” I said. “I don’t really think they are.” The words came out before I really knew they were true. But they’re not getting easier, we’re just learning how to cope with everything better. Most days. 

Really, for someone in our situation, I feel like we’re coping about as well as we could be. Mostly because there’s no other option, but also because we’ve got such a wonderful support system. But am I OK? Like really OK? I don’t know. Yes and no. I have good days and bad days every week, just like everyone else. Sometimes the bad ones outweigh the good ones and I have to just try again next week. Sometimes I give up and take a nap, even when I’m not tired, just so I can have a break from (gestures wildly) all of this. (Don’t worry, my therapist said it was fine, so that’s basically a prescription for naps.)

I’d really prefer for no one to ask how I’m doing or if I’m OK ever again. Because the answer is “BLERG” and “no.” Joe and I have talked about this a lot, and have discovered that while those broad questions are hard and frustrating for me to answer, I’m OK (ha!) with the more specific ones. Things like “how is your pain level today” or “how did you sleep” or “do you feel good or Hulk smash.” Those things are easier to quantify and don’t usually spin me into an existential crisis (which doesn’t take much, honestly). 

And, of course, I’m forever open to questions about any kind of animal but especially birds and otters and dogs. Even though these have nothing to do with cancer. (Maybe especially because they have nothing to do with cancer.)