Thoughts for the newly diagnosed

I have been thinking about one thing I would have done differently if I knew then what I know now. I wish I would have looked at a support group as an additional information source. I didn’t start going to one until 6 months into my treatment. I could have learned so much about what I was about to go through by just listening to other people’s experiences much earlier. I could have heard questions and topics I wasn’t even familiar with. I might have been prepared for insurance denying me treatment. I might have better understood the effects of steroids. I only looked at a support group from the emotional support aspect and I didn’t feel I needed that. My perspective shifted when new people came into our Cancer Support group early on and I felt like I had useful information to pass along. So my suggestion is to find a support group right away…for survivors, for caregivers, for anyone related to your situation. You don’t even have to talk. You will absolutely learn things that can help you navigate what is to come.


Training my brain

I recently had a cognitive evaluation to understand how my brain is actually doing after surgery, radiation, and chemotherapy. The results were in line with what I’ve been experiencing, so it’s nice to have validation. Now I can focus on doing things that will target my impaired areas. I’ve actually been pretty spot on with my previous suggestions of playing piano, learning braille, and my paint by sticker books (in terms of them being good exercises for my brain). I will be adding each of these to my daily activities to the extent I can. I also have known that I need to challenge my brain with new things – and my neuropsychologist also suggested some things that I clearly will not be good at, such as playing catch or tennis. I’m going to take this guidance as a challenge to have adventures, to actively try things that I wouldn’t have because I’m scared or am convinced I won’t enjoy or I’ll be terrible at. As long as it is something safe (Dodge Ball is probably out), then why not?  When my gut reaction is no, I’ll stop and rethink. (It’ll be like Jim Carrey in “Yes Man” when he just says yes to everything). I need to work on hand-eye coordination, so maybe I’ll add juggling into my activities! That will be hilarious. A dance class? Also would be hilarious.  There will probably be many frustrations along the way, but there’s no reason not to add a little adventure to my recovery! Suggestions are welcome!

Sometimes I question my disability

Am I disabled enough to be eligible for things for the disabled? I know I don’t have to “look” disabled to BE disabled, but even I struggle with this concept. I felt the need to look up the definition, which is: a physical or mental condition that limits a person’s movements, senses, or activities. I absolutely fall under that definition. I don’t know if that will appease my struggle, but it’s good information to have.

This past weekend, activities reminded me that I AM disabled. I took myself to a concert in a large arena this weekend. I had a seat in the nosebleed section and as soon as I started up the steps toward my seat, I because anxious and uncomfortable. Once I sat in my seat and looked around, it only took about 15 minutes before I had a headache, felt dizzy, and my eyes were incredibly strained. The perspective from up there was so visually jarring, things seemed very odd sizes, the section was very steep and disconcerting. When I couldn’t take it any longer, I headed downstairs to speak with someone in guest services. Eventually, after much back and forth I was able to get a seat in the accessible area right off the concourse that is available for people in wheelchairs or who are semi-ambulatory. I’ve now learned that I need semi-ambulatory seats for anything in that kind of venue. They cost more but at least I don’t feel like Alice falling into the Looking Glass there. And I learned that in order for me to get tickets for events like that in the future, I have to call a special number at Ticketmaster; they are not available through the website.  As frustrating as all of this was, at least now I have the information and it won’t happen again. It’s just one new experience that doesn’t turn out the way I had anticipated. Guess I’ll have to attempt to get used to that uncertainty.

My brain, it lives!

This morning I watched the sun rise for the first time in 18 months. I used to do it every morning right after my brain surgery when the steroids were keeping me awake. I would listen to music and just watch. This morning I had some black coffee and listened to Explosions in the Sky while I watched the sky turn from dark blue to salmon to pink and then an orange-ish yellow.  It gave me time to reflect on how much has happened and what is different now.

It’s hard to explain to people what it’s like to have a brain after it has been injured in some way. This article is the closest I’ve seen anyone get to an explanation:

My thoughts this morning have been on not just the after-effects like in the article, but what I think is different about me now. Here are some of the things I came up with:

-My taste in colors is different. I’m drawn to higher contrasts and brighter colors because they are easier for me to see. Subtlety does nothing for me anymore.

-My taste in music has changed. I prefer more relaxing music than the hardcore and cacophonous music of my youth.

-I shop for clothing and other things by sight and touch equally. Once I find something I like, I HAVE to touch it and see how pleasing it feels. This is extremely important to me now. No online shopping for clothing for me.

-I walk into things a lot, even in a familiar space where I know the layout. This is mostly from the missing vision, but probably also just the slower cognitive processing.

-I still refer to my brain in the third person, as if it were a separate entity completely. After surgery my brain was a definite “he” for some reason. Now it seems to be an “it”.

-My plantar fasciitis disappeared immediately after surgery and has not returned. I chalk it up to relaxed nerves. The one major bonus to my brain surgery!

These are self-reflections; it is likely that others who know me would have their own thoughts on what is different in today’s interactions vs. pre-surgery interactions.




If it were me…

I find it amusing how often people feel the need to express their judgment of a situation by making a statement about how they would handle a situation if they were in it. I was reminded of this again from Joe Biden’s recent comment about how he would have handled Trump.  I suppose in a way the “If it were me” perspective is the opposite of empathy.  Instead of trying to put yourself in someone else’s shoes to try to understand where  they are coming from and how that has impacted their behavior, the speaker is placing judgment on the person in the situation and putting themself hypothetically in the situation, yet making the whole thing more appropriate or acceptable?

To borrow the March for our Lives slogan, I call B.S. on this. Until you have actually lived in a situation that is stressful or emotional or incomprehensible, you really cannot say you know what you would do in that situation. You know your own personality, sure, but we all find ourselves in situations that we never expected to be in and we are forced to interpret, respond, adapt, etc. as a situation unfolds. Think domestic violence, sexual harassment,  being diagnosed with an illness, having a sick child, being involved in a tragedy, etc. etc. Yet this behavior of saying “if it were me…” is so commonplace. I know, I used to do it just as much as the next person. Until one day I simply stopped. I don’t assume I know all the factors involved in someone else’s choices; therefore I don’t assume I know better. Also, who am I to judge?

I advocate for the following: Try putting yourself in someone else’s shoes with empathy rather than putting your hypothetical shoes in someone else’s situation with judgment.

My first piano lesson in decades

I decided that taking piano lessons would be a good idea for multiple reasons, including evaluating my stamina, building those connections in my brain, learning a skill, etc. I had a lovely woman named Emily come to my apartment for 30 minutes earlier this week.  I have played a little bit here and there in the last year and I guess the same is true for the last 30 years. I took lessons as a kid but never really followed through.  Anyway, I learned some interesting music theory stuff that comes with taking lessons as an adult, but I also learned that taking piano lessons for me is very difficult because of my eyes. I couldn’t really follow her finger when she was pointing to a particular spot on the music sheet, nor could I actually see what she was doing when she was demonstrating things to me.  Even though her hand was right in front of me pushing down on the keys, my eyes just couldn’t really see it because of the minimal contrast between her fingers and the piano keys, the movement of pushing a piano key is minimal, and I simply cannot process all five fingers at once.

The good news is that I now know my baseline and have somewhere to start from.  It is just much more challenging for me than the average person to learn via demonstration at this task. Though, amusingly, Emily told me that for children the hardest part is NOT looking at their hands but focusing on the music.  Well, I literally cannot see my hands and the keys in a useful way, so I don’t have to worry about that!

Lesson number 2 next week!

I’m 40 but see the world as a 4 year old

I recently had a conversation with a good friend of mine about her 4 year old son and how he hasn’t learned yet to prioritize visual stimuli so he easily misses things or  is overwhelmed.  The filters aren’t yet automated for him. It was funny because I didn’t have to explain to her what I’m experiencing from my visual deficit because she gets it…I see the world like a 4 year old, except I KNOW that I see the world like a 4 year old. (Does this warrant a shout out to my brain tumor?!?) Instead of not learning it yet, I am very aware that I have lost my filtering mechanisms. I am conscious of missing things. I don’t trust my vision because of this. I am that person who will only cross a street at the crosswalk and when the light tells me to or while holding onto the arm or shoulder of the person I’m walking with because otherwise I am literally afraid I will get hit by a car that I did not see. This is obviously just safer anyway and how crosswalks are designed to be used in the first place, so in the end I guess my wonky eyes have forced me to be a more law abiding citizen and a better role model for all those actual 4 year old kids crossing the street with their parents. Yay me!