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.

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!

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.

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:

https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know

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.