I Might Change Colours: A Draw-Tell Exploration of Technology Use During Bereavement and Chemo Therapy Brain Fog

Denise Lengyel, Open Lab, School of Computing, Newcastle University, UK

Amy K. Hoover, Ying Wu College of Computing, New Jersey Institute of Technology, USA


Amy Hoover is an AI researcher whose work centers around evolutionary computation, music, and games. The experiences she shared are from the isolation she felt during the onset of COVID-19 lockdown coinciding with her cancer treatment and recovery. She is neurodivergent.

Denise Lengyel is an HCI researcher whose work centers around arts-based methods in HCI, including drawing and storytelling. The experiences she shared are from a death-related bereavement she experienced shortly before the COVID-19 pandemic. She is neurotypical.

We know each other from other research endeavours but during our discussions we noticed that there was an interesting overlap in our personal and technological lifelines: how technology was a factor that helped and hampered our lives during intense phases of brain fog and stress.

So we decided to meet and exchange our experiences, exploring differences and similarities with a focus on digital technology design and how it was (not) accessible for us and/or did (not) support us during this time in our lives.


Before we met to draw and talk about our experiences, we had two one-hour meetings in which we brainstormed on our lived experience connected to 'Neurodivergent Self-Determination' and technological design. We explored and narrowed down the topic for us this way. It also helped us to each choose a concrete experience to reflect on and then choose the method(s) with which to explore these.

We first drew our experiences for 15 minutes using SketchTogether, a web browser app for collaborative simultaneous drawing. Amy used her desktop PC and mouse, Denise used her laptop's stylus and touch screen. We drew at the same time and on one and the same canvas, Denise on the left and Amy on the right side. Denise took care of the timing using her mobile phone and Litalico's Mouse Timer. Before we started drawing, we had typed in four keywords in the middle as a guidance, which were inspired by the workshop call (neurodivergence, brainfog, self-determination, design tech).

We then discussed our drawings and underlying experiences for 25 minutes, remotely via a Signal video chat. We created a transcript of our conversation using Otter, which we then manually corrected and shortened to focus on the most relevant elements of our discussion. After that, we individually reflected on our drawings and conversation to identify key take-aways for us. Below, you can find the resulting drawing, a condensed version of our conversation and our reflections.


This image shows two drawings, one in black-and-white on the left and one in mainly red and orange colour on the right. Between the two drawings are written the words neurodivergence, brainfog, self-determination and design tech. The left drawing shows four scenes from death-related bereavement, including a person not being able to follow a conversation or answer questions, a person being cut off while they're talking and a person sitting in front of a laptop being confused about the structure of information provided on it. The right drawing shows three scenes from chemo therapy related to cancer, including two people sitting next to each other with one being linked to colourful boxes above them, a scene showing a person sitting on top of these boxes and a scene with a person on a couch far away from the boxes, which are now gray, on top of each other and connected by squiggly lines.


D: So how was the drawing for you in the first place?

A: It was fun. I didn't get to finish the main point, I think, which ultimately ended up being the lines connecting. The small boxes are all the apps that I would typically use to function on a normal working day. And so I think that this has something to do with the connection between people and whatever app was serving whatever purpose I needed. Where it was super structured is not ‘normal’. It was structured in my own way, with all of these connecting lines to different ideas and to different people, but the boxes were at least somewhat separate.

D: That's okay, I think you can still put in the connecting lines after.

A: Thank you. I also might change colors, but I, you know, tools are what tools are. Yeah… What about yours?

D: So for me, if you look at the lower left, it's this collection of things that I'd usually use and it got narrowed down more and more to where I could just function on paper, because I got so much mail and paperwork, and all of the online information didn't help. And so there was this overwhelm and this lack of guidance. I had to rely on so many people and the tech didn't help me at all. Communicating with people through tech did not work for me at all; face to face conversations were difficult enough as they were—but I didn't feel self-determined cutting these things out and pressing the pause button on tech.

A: I think there's a big difference between us. It sounds to me like you were able to get your important issues under control through a good support network and through printing out these papers or in communicating with people face to face. Whereas mine ends in—like, the first one has two people, that's a student and me; the second one is me at home and then me at the hospital; and the third one is me alone, not being able to move from the couch, having all of these things to do and tools to use, and I was not able to accomplish anything. So I think that—if it's accurate, the way that I perceive what you've said—that's a major difference in the self-determination.

D: Well, yes and no. There is this overwhelm [which we share]. For me, it was not being able to sleep, not being able to think, because I needed to pay attention to my phone, my email and all of these things chasing me. It was important which channel you used to communicate with me, if you did it online. But the majority of German admin is through phone and letters, so I've barely had the chance to even use the tech that I wanted to. Also, I think people take self-determination away from you. People assumed instead of asking questions, they didn't notice when I was overwhelmed by information. And there was also this tendency for people to finish my sentences, finish my stories. They wanted to do this out of love, to protect me. But it annoyed the fuck out of me. And the same thing I experienced with technology. Also, I didn't want to be presented with all the ifs and buts. I wanted to be presented with ‘do this there, with them and like this’. No ‘but you could do it like this, you could do it like that, I'm gonna suggest something to you, maybe you want to try that’.

A: I felt like the programs themselves I was trying to learn to use during brain fog, I felt like the way that they restricted me was similar in the way that ‘you could do this, or you could do that. Or you could do this.’ And what I really wanted, was for it to say ‘use a notetaking application on the iPad’, a couple of specifications, like infinite scroll or something. And so I had to get the overhead of opening the app, figuring out where the next thing to click was, the next thing and the next thing and then trying to figure out how to export it so that I can put it into something. Each one of those steps feels like another piece of your decision tree, where somebody is giving you another thing that you have to explore. So it's like: me trying to understand the model feels like the explosion that you were feeling. Not that I know what you were feeling. But that's a similarity, I think.

D: Yeah for sure. I also wasn't aware that it can actually cause me more anxiety than it can do me good if my data is shared between services. So for me, that was a conundrum I just couldn't solve.

A: Yeah, I gave up that control immediately because it was beyond my ability to restrict. And I can imagine that confounding… I feel similarly I think.

Final Reflection


I think that 'normal' is often understood as in relationship to everyone else, as our desire to fit into a particular social group at a particular point in our lives. Probably many academics have felt ourselves as 'different' in middle school (ages 11-14) or high school (ages 14-18), but now in our adult lives after finding our niches can look back and see how unimportant it was to be 'normal' then [Matt Stone in Bowling for Columbine]. In fact, sometimes we can see an almost inverse correlation between success in our adult lives and normality during our teenage years.

I ended up telling my students that I was teaching during recovery that not only had I never been normal, but now I couldn't even approximate it. I felt lost in a sea of interface designs that should be able to work for me, but left me stranded mid-thought or mid-chore. I felt so horribly alone and incompetent. Brain-fog during cancer recovery is terrible.

But during grief or cancer treatment, our relationships to nearly every aspect of ourselves and how we fit into society is subject to change. It was during this brain-fog that it became so clear to me that nearly all of the interfaces I was interacting with were designed by people who had the mental energy and flexibility to quickly model what they expected and needed from the app. It was obvious that simplicity may have been understood syntactically, but not semantically.


I had co-designed and programmed a digital storytelling app for children with autism, their parents and teachers during my work on the 3DBI project. And I had the nagging feeling that, as researchers and designers, we sometimes get things backwards: Our app (and apps similar to it are often the same) focused on parents and teachers telling stories aimed at behaviour change in the children reading them. And, yes, we co-designed rewards with the children, which they would be shown after reading. But we did not co-design other parts of the app, including the interface and stories. We did things FOR them rather than WITH them, I felt. I was reminded of that when people put me in a similarly 'passive' position during my bereavement, and the same again when I had Covid brain fog later. They did things for me at times, not with me, leaving me feeling feeling dependent and 'externally controlled'.

I'm wondering what we're designing and designing for: Is self-determination what is enabled and/or achieved during the use of a product or service? Or are we giving people the tools to develop it after having used said product or service? Also: How is self-determination connected to actually being able to use the product/service and access it via the interface(s) it provides? How many interactions die on the hill of interfaces, hidden functionality etc? Amy's experiences and reflection remind me to revisit and reflect anew the old motto that design makes up the important 10% through which the other 90% of functionality can (or cannot) be accessed. How much do those 10% really count? Are they indeed only 10%?

And how can we improve our methods of working together with neurodivergent people to ideate products and their designs? Are arts-based methods, such as visual ones like drawing as Amy and I did here or performative ones like (TableTop) roleplaying, a way forward in search for a different way of expression and understanding? What could an arts-based kind of 'thinking on the page', of thinking with one's hands and body contribute here?

How to Cite

Lengyel, Denise and Amy K. Hoover. I Might Change Colours: A Draw-Tell Exploration of Technology Use During Bereavement and Chemo Therapy Brain Fog. Presented at the INTERACT'23 workshop "Designing Technology for Neurodivergent Self-Determination: Challenges and Opportunities" at INTERACT 2023: IFIP Conference on Human-Computer Interaction Conference, York (UK), August 2023. https://tincrow.net/interact23-neurodiv


This paper was peer-reviewed by, accepted to and presented at the INTERACT'23 workshop "Designing Technology for Neurodivergent Self-Determination: Challenges and Opportunities". The research was funded by the Center for Digital Citizens (EP/T022582/1). For the purpose of Open Access, the authors applied a CC BY public copyright license to any Author Accepted Manuscript (AAM) version arising from this submission.