Prior to spring 2021, I didn’t think of myself as someone who was a stranger to cancer. After all, my paternal grandfather had died of lymphoma when I was in high school and a good friend had lost her mother when we were both young. Recently, a colleague and friend had successfully ended a bout with cancer and I would have told you that I had some sense of what it might be like to teach through cancer.
I was wrong.
From my colleague, I had learned that starting radiation involves getting tattooed in order to ensure that the radiation is consistently aimed at the same spot. So, once I had agreed to use radiation as part of my so-called “treatment,” I started thinking about my tattoo. Since my tumor is in the parietal lobe, I thought I might get a tattoo more or less where the incision was for the brain surgery. To be honest, I wasn’t sure why I needed a tattoo since the incision is a fairly clear indicator of where they needed to aim the radiation, but I’ve learned to keep my thoughts somewhat to myself in the past few months of dealing with the doctors. When I asked about the tattoo, I was told that they don’t tattoo the back of the head because of all the hair. But I was told that there would be a tattoo, so I then began to imagine having a permanent tattoo on my forehead. After all, one of my maternal aunts had just told me that she still has her tattoo from a bout of cancer from years ago, so I was working to acclimate myself to the idea of a permanent dot on my forehead.
As it turns out, I was wrong. In early June, I went to an appointment at the hospital and had a plastic mesh mask melted onto my face, covering my nose, mouth, eyes, and the whole front half of my head. Did they tell me that they were melting it onto my face? Sort of. Did they tell me that the mask is bolted to the table? No. Did they give me any advance warning so that I could have walked into the appointment understanding that I was going to have plastic mesh melted across my mouth and face? No. As someone who experiences claustrophobia, I was left shaking and in tears when I walked out that day. And I was left questioning why it was so difficult to just tell me.
In Special Education, we frequently put the accommodation in individualized education plans (IEP’s) for students to “preview” vocabulary, class activities, etc. In light of my recent life experiences, such as the mask, I’m coming to realize how powerful that one line accommodation really is. I’ve had students in the past who needed warning about fire drills. The level of anxiety and panic that they experienced during an unannounced fire drill would result in an inability to engage for the rest of the day or longer. I often felt like this was an exaggerated response. However, it has taken me quite a few weeks and a full-on adult temper tantrum at the clinic before I found ways to process the shock that I experienced from having that mesh melted across my face as my head was bolted to the table. As I processed the experience, I was able to finally put in words that part of what would make working with me a success on the medical front would be that I had to be informed of things in advance in detail. Given information, I would experience little to no anxiety and I would be able to fully engage in the medical process.
Thanks to my tantrum, I was given two extra appointments with the oncologist including one where she showed me the room they would use, the machine, and the augmented MRI scan that would be used to map the daily zaps. She also introduced me to the technicians who would be doing the scans. Recently, one of the technicians let me know that she was being rotated to a new part of the hospital. Not only did she preview the change for me, but she also brought the new technician to introduce her to me and they reassured me that they will continue the process they had developed of talking me through the 15 minutes of radiation each morning. It’s hard to describe how terrifying it still is to be left alone in a room with my face covered in plastic and my head bolted to the table, knowing that I don’t actually know how to unbolt myself in the case of an emergency.
What does this mean for our students? I’m really thinking about how powerful it is to just give our kids a heads up. For me, being talked through experiences in advance does not generate more anxiety. If I have an opportunity to ask questions, especially as I build relationships where people see me as human, I can feel my anxiety reduce even as I face increasing side effects from the radiation each day. Why wouldn’t we offer this to our students as well? To my mind, providing information like a calendar with daily topics and projected dates for assessments or projects should be presented to students as an opportunity to be engaged, educated, knowledgeable, and aware. I do understand that some students perseverate and I think this is an opportunity for us to support those students in understanding that knowledge is powerful, not stressful. For myself, I know that I will be thinking very differently about the ways in which I withhold information from students and the ways in which I try to work with them to have them engage with previewing information in powerful and healthy ways.
Universal Design for Learning 