Just Your Average Hard-of-Hearing, Chemobrained Amputee

I'm trying to write about my chemobrain, but keep getting distracted. Collecting my thoughts takes more wrangling than it used to.

Chemobrain, also casually known as Chemo Fog and more intimidatingly known as Post-Chemo Cognitive Impairment, refers to the changes in memory, communication, and other cognitive tasks induced by serious regimens of chemotherapy. It's perhaps the least obvious of my disabilities that stem from treatment due to osteosarcoma. It becomes more apparent as my day wears on, as my week crowds with appointments, and during times where I am otherwise overloaded. It's also an average part of my life now.

As someone who works on narratives about disability and technology, I post a lot of things on Facebook about disability. Sometimes about my own disabilities, but often about disability activism, language, and pride. I don't often talk about my chemobrain, but the other day I shared one of my "new normal" chemobrain experiences on Facebook:

"I was having trouble finding the word for suitcase, and asked [my spouse] if he could grab the green and gestured toward the closet. As way of explanation, I said, "You know how the words."

He replied: "I know how the words."

And that's how my chemobrain goes sometimes, especially when I am tired. He had to relate the phrase "You know how the words" back to me twice so that I could share this."

This post wasn't meant to lament my chemobrain. I loved using "You know how the words" as a description - so much that I wanted to preserve and share the conversation. My spouse and kids do indeed "know how the words" go with me: with gestures (acting out hand-washing to my children), with extra descriptions around the words I cannot quite find ("the machine that makes toast"), with the sounds the words I can't find make (imitating the sound of the washing machine), with action and color (green and pointing, like the suitcase). It's boring, domestic words that slip out of mind.

As a multiply-disabled 33-year-old, understanding myself has taken some time already. The hard-of-hearing and amputee parts of me are much easier to see, quantify, recognize, and grasp. My audiogram can be handed out to be believed and one need only glance down to see my leg.

It's harder to describe how a very intense regimen of chemotherapy has changed my mind -- my deeply personal experience with language, planning, and communication. Plus, my cognitive changes due to chemo are mostly felt only by me and those closest to me, so it isn't a disability that everyone would necessarily understand even if I found the right way to communicate it.

Getting used to my leg amputation was really difficult. Accepting that my hearing wasn't going to get better was a little easier, though it took longer. I was so focused on my leg for some time that I didn't address my other disabilities. But with chemobrain, none of this strikes me as sad. Some of it is even funny, and, several years out of treatment, it all seems rather normal.

People could look at me and see that I was an amputee. It was easier to see and feel. People can't hear how I hear: now with tinnitus and loss on some higher pitches. The experience is inside, but can be quantified on audiograms and through other diagnostic tools. I have hearing aids now - and I sometimes wear them too.

My chemobrain sits with me inside. It's different from how things were before, but it can vary by day, time, energy level, distractions, and the amount of things I am trying to hold in my head. It's not just changes in language, though that's probably the most focal for my family when I'm acting out the food I am trying to suggest we have for dinner (noodle arms!).

I can also forget what day and what appointments I have. I'm lost without a good calendar reminder system; I didn't used to have to check my calendar this much! I used to wake up knowing what day of the week it was, instead of having to check my phone (or my spouse). It's always awful to have hope that it's a Friday, when it's really a crushing Tuesday morning. This difference in my experience of time and memory can't really be felt by anyone by me - except when I miss a meeting.

When I refer to myself as a hard-of-hearing, chemobrained amputee, I am not putting myself down. I actually spend a lot less time worrying about having a normal body and a normal brain, several years out from my diagnosis of osteosarcoma. The cancer I had - or, should I say, the cancer that had me? - was and is truly awful. The treatment for the cancer that had me is something I still have trouble talking about, but not due to chemobrain. I've actually found that I have a lot more space to love myself with my disabilities than I did when I was nondisabled. I feel freer and unconfined just by saying them outloud. I'm way past normal.

What advice would you give to others dealing with "invisible" disabilities? Share in the comments below!

Photo courtesy of author.