Maybe humbled isn’t the right word.  Learning new things. Having aha moments. Being challenged in an educational way. I just like those moments. This entire brain tumor experience has been a continuous learning experience.  I’ve learned about medical insurance. I’ve learned about the amazing resources they have for people who are dealing with these issues (the American Cancer Society Hope Lodge or as I affectionately call it the Cancer Condo – check this out if you aren’t familiar with it..free facilities around the country). I’ve learned lots about my brain and cognitive functioning in general. I’ve learned about all different kinds of cancer, all different kinds of therapies that people undergo. I have started working on my Spanish lessons and learned I might actually be able to roll my r’s if I don’t overthink it; though I have yet to find a book store that actually has a book to help me on the Braille side.

I’ve observed how dramatically differently people in my life have handled my diagnosis and experience, how people in Mom’s life have handled my diagnosis and treatment and her role as a caregiver, how other patients and caregivers here at the cancer condo are dealing on a daily basis. It is very interesting to see how some people surprise you in both directions. It makes me think about how I would handle the situation from the outside as opposed to the inside or how I would have handled this 20 years ago.  The young folks here in there 20s are the ones who I feel humbled by. I feel I’m doing fine and that my old age of 39 brings me wisdom, and yet, I’ve only been dealing with this for 4 months.  They have been dealing with their issues for years, when teenagers, before they really got to live their lives. They’re getting transplants and immuno-therapies and that is the only life they have known. That is certainly not something I have any experience with…and it makes me think that I have more to learn from them than I realized.

Today marks the first day of Summer and the halfway point of my radiation. So I put on a summer dress and we’re getting Insomnia Cookie Ice Cream sandwiches are we kill off some A-A-Ron cells this afternoon. Take some time and do something good for your brain cells today!

 

Lately I’ve been thinking a lot about how I’ve become my own data point.  For years, I’ve done user research on others, observing their behaviors and their comments and then describing their needs based on my analysis.  The only time I really ever used myself as a participant is during expert reviews where I pretend to be a user and act as they would act while interacting with something.  What is happening now is clearly different. Rather than focusing on a specific interaction of interest, a job task or a specific decision someone needs to make, I’m just observing myself going through life and having little aha moments about how I’m seeing  the world or how my behavior has changed. Some things that  I have noticed:

• I am much more aware of the effects that chemicals and medications have on neural processing, and particularly with how they aren’t necessarily stable.  After my surgery, my medication fluctuated over the course of a couple months, which impacted my mood, my cognitive processing, my rationality, my energy, etc.  I didn’t realize it until later on when I looked back and saw how much I was different.  That realization has me thinking about designing for patients who don’t have a stable mental state, which may or may not include some kind of perception or cognitive deficit. Prior to this, my thoughts were much more attuned to environmental factors that affected a situation and one’s ability to handle that situation. Now the thought that there may be a lot more going on internally is a fascinating one. Clearly my interest in healthcare matters is likely to grow with this experience.
• With a visual deficit, I find myself interacting with the world differently.  Because I don’t process the full visual field as easily, it is just easier for me to follow someone else doing something as opposed to trying to figure something else out.  This is new. I’ve never been shy about being first in line for anything, picking the direction to travel, starting the train moving, etc. Now it is just easier for Mom to lead or pick the table or whatever.  She’s not used to this from me either.  The realization came when we went into a public restroom and I walked up and got in line behind a woman.  Turned out she wasn’t in line, just blocking the walkway, and there were plenty of stalls available…but I didn’t look beyond her, I just followed the standard convention of getting in line behind someone that looked like they were in line. Even though I’m aware of this now, I’m not sure I will wind up doing anything differently until my vision gets any better…just interesting to be experiencing. My vision will likely be shifting for at least another month or so, so I’ll just enjoying riding in the passenger seat and no longer caring about what others around me think of me because I can’t really see them anyway to care. 🙂
• Curious to see what comes next…

My vision continues to be interesting. Although some of the left periphery is starting to be slightly active, I still find myself seeing mostly the right side of something first and then having to work my way back to the left to figure out what I’m looking at. I suppose it would have been easier for me if I read a language from right to left. Alas, I’m a left eye dominant girl in a left-to-right reading world. Today’s amusement was a sign that said “Women’s Rights Matter”, but I read “Men’s Tights Matter.”

It is amusing also that I have for years had this pet peeve about font size.  Designers like to have elegant, classy fonts that are often very tiny and difficult to read from very far.  Users should not have to strain to read things from their expected viewing distance, especially when they are engaged in critical decision making tasks.  It became a consistent pattern over the years working with many designers and I started referring to it as the Spinal Tap  mini stone henge issue. I’ve even been called the font police. Now, rather than being empathetic to the “average user”, I literally have a more difficult time seeing smaller fonts, text with less contrast, and just crappy fonts that are difficult to read in general.

It will be interesting to see how my vision shifts over the coming months during and after treatment.  The issue is not my eyes, but my visual processing pathway within the brain. Neuroplasticity  is very real and it’s possible my vision will improve drastically.  It is also possible I will have a longer term deficit.  Either way, the world continues to entertain me in whatever way it can and I’m sure I’ll keep the pet peeve regardless of whether I can  actually read stuff easily or not. I may wind up noticing really good designs as opposed to bad designs because I will actually be able to read them. That would, frankly, be a nice change of pace for a human factors engineer. 🙂

MEN’S TIGHTS MATTER!!