This evening I had a Lyft driver who, upon finding out I was returning home from the Cancer center, shared with me that she was a breast cancer survivor and then proceeded to tell me all about her beliefs in alternative medicines and how she has cured her own cancer without traditional Western medicine. I listened politely and engaged in some conversation, while getting the clear message that she knew more about cancer treatment than I did and she was bestowing her knowledge on me. This got me thinking a little bit about this innate urge we have to help people when we learn of some “problem” they may need assistance with. It seems to be a reflex in some ways, even when the situation is absurd when you dig a little deeper. For instance, why is it our natural response, when someone tells us they cannot whistle, to respond by showing they we can whistle? Or when someone says they cannot roll their tongue, we naturally roll our tongue to show them. Whistling or rolling your tongue at someone who cannot do it in no way helps them learn how to do it. If you think about it, it is essentially a slap in the face, a na-na-a-booey to someone who has just shared a personal limitation with us. Yet we don’t even think about it, it we just do it automatically. So is it the same absurd phenomenon with the Lyft driver talking to me as if she has better information about my medical issues and treatment than I myself do? That certainly seems absurd. Or is that completely different and just a personality issue? Is that a kind of a know-it-all complex of sorts? Thoughts are a-swirling. I was recently reading about how one of the theories about why yawning is contagious is empathy. Maybe this need to be helpful stems from that? I don’t know. It’s definitely absurd. At least my Lyft driver on the way there gave me recommendations for a great Turkish restaurant, so I’m going to say that makes up for the return trip driver.
I had suspected for a while that I would not be good at an escape room. I had tried this once years ago so I knew what the general concept was. Given that I don’t do well in time-sensitive activities anymore and that I’m not the best at puzzles anymore, I figured an escape room would be pointless. However, my need to keep stepping out of my comfort zone and trying things like this triumphed. With four people I didn’t know and one person I did, I spent an hour in an escape room trying to solve the mystery of the black widow. As expected, I was pretty much useless in helping solve any of the puzzles and I couldn’t really follow what was going on with the group and any time I thought I might have something to contribute, they were already way ahead of me. Luckily it was a small room and only a group of 5 people in addition to myself so while it was over-stimulation of a sort, it wasn’t the kind that made me extremely uncomfortable. I simply surrendered to my limitations and amused myself with how different my reality is. The four people I didn’t know didn’t have any idea who I was or what I’d been through, so for all they knew I just wasn’t very bright. More likely they were just focused on the game and didn’t even notice that I didn’t really contribute. It matters neither way.
I used to be really good at solving puzzles and I loved doing puzzles for entertainment. My cognitive testing from last year suggested that I can solve any problem if I have no time constraints. The escape room is a timed event, so that puts me immediately into that category of things I have difficulty with. I did wonder afterwards, if I was given the same instructions and allowed to just be in the room for as long as I needed to, would I have been able to figure the whole mystery out? I have figured out how to put furniture together on my own, though the instructions for those aren’t intentionally trying to trick me. Maybe one day I’ll make friends with someone who runs an escape room and ask them if I can get in on a day they are closed and just see what happens. Anyone know anyone with an escape room hookup?
In addition to validating my lack of escape room skills, I also “attempted” to play ConnectFour and it was a laughable venture. My brain just had no idea how to use those old highways, clearly bogged down with lots of construction and detours that prevent my little signals from reaching their destinations in any useful time frame. Maybe one day my brain will be able to connect more dots again…
Recently I’ve had some successful adventures that produced so many smiles that my face has hurt! I’ve mentioned numerous outings that have resulted in headaches or over-stimulation or general disappointment, so it’s nice to be able to mention some of the ones that exceeded expectations. A few weeks ago, I rode go-karts! Since I do not drive anymore, I really wanted to try something that would let me simulate that experience to just see how it felt with the world zipping by me. Last summer my friends suggested go-karts as an option. When I got the chance, I jumped on it! I had a little trouble with the car getting started, but once it did I had a blast. I rode around that track with rain falling on my head and skidding around the corners and it was fantastic. Although the rain shut the track down after only one session, I was happy to have gotten the chance and know that I will be able to do it again.
My most recent adventure was roller skating! I had no idea that people still did this! We went to an outdoor roller skating pavilion in a park where you just give them your ID and they give you skates for free. My first time roller skating in over 20 or 30 years probably shouldn’t have been done on concrete, but I had a blast and didn’t injure myself. The place was hopping, there were all kinds of crazy outfits, there were even people who could seriously skate, dance while skating, do spins and other tricks, and just look super smooth in general. Watching them was just as much fun as skating! There was so much joy in that pavilion.
I hope we all find more of these joyful, carefree adventures and do them more often!
I have been having an internal conversation with myself lately. We have all heard about the power of words. Our internal dialogues are as important as the words we speak out loud. Speaking positive affirmations out loud is even supposed to impact our DNA. I have noticed how much I mention my wacky brain or having half a brain or being blind, etc. I say these things sometimes in a joking manner, sometimes in a matter of fact explanatory manner. I don’t even really think about it. I’m just speaking my reality. The awareness, though, got me thinking about what impact, if any, this is having on me. Humor is certainly a valid way of dealing with difficult issues. It has helped me over the last couple of years for sure. I even think I’ve probably had more laughs related to my brain tumor than the average brain tumor landlord. I suppose the humor is my way of letting the people around me know that I’m OK and it is not a sensitive topic. I would say the humor has been a positive thing overall and as I write this, I realize that I think I have answered my own question. It has brought positivity to my life, so I think I’ll keep it around. I’ll remain a positively awesome, partially blind girl who likes to laugh at my wacky brain. It’s probably more fun anyway.
I still struggle with feeling like I’m a productive member of society. I volunteer one day a week, but I’m on full time disability because my brain is still healing and adjusting to its limitations. I wrestle with wanting to do more but not being capable of what I used to. Today I decided “my job” would be to spread some joy by wearing my “Smile. You’re Awesome.” shirt. I had this shirt custom made a while ago but forgot about it. I find that the shirts that say “Smile IF you’re awesome” don’t have the sentiment I really want to convey, so I made one that did. I don’t know how many people actually noticed it beyond the two women who work in my building, but it made them both smile so I consider that a success. If it also has the same effect on you, then more success!
In addition to my shirt, I picked up trash during my morning walk, I said “Good morning” to everyone I passed, I helped an older gentleman cross the street, and I gave a flower to my building concierge. While I may not be solving world problems, at least I can influence the space around me for the better.
Although I mostly write about my bizarre experiences with my brain tumor and my wacky vision, I thought I’d give a few words on brain tumors overall for the month of May.
Did you know that the ribbon color for brain tumors is is GREY? As in grey matter!
The best article I’ve come across that speaks to what it is like to have a brain injury is this one and so many of these things ring true for me (I couldn’t remember whether I posted it on here before (which will not be surprising once you read it!)
Celebrate Brain Tumor Awareness Month!
- Sign up for your local Brain Tumor 5k
- Donate to the American Brain Tumor Association (https://www.abta.org/ ) and/or the National Brain Tumor Society ( https://braintumor.org/take-action/ways-to-give/ )
- Give your brain tumor survivor a hug!
For more than 2 years now, I’ve been afraid to ride a bicycle. In fact, I’ve been worried that I may never ride one again. In the past I have enjoyed renting bikes at the shore and riding on the boardwalk while enjoying the fresh morning saltwater air. However, after my brain surgery, my loss of vision, my slower reaction times, and my occasional balance issues have all made me concerned that riding a bike would be both dangerous and disconcerting. I’ve been wanting to try it now for a while to find out one way or the other. This past weekend, I rented a bike and went for my first ride and it was AWESOME. It wasn’t scary or difficult. In fact, it was, literally, just like riding a bike! As long as I keep to paved trails or flat surfaces and there aren’t people or animals running out in front of me that require quick reflexes, then I’m good, especially if the only brain power I really have to give if following someone else on a bike in front of me. I am so very excited for this new discovery and to add to the list of things that I both enjoy doing and feel comfortable doing. Woohoo!
And if you haven’t ridden a bike on a nice sunny day in a long time, I highly recommend you do it soon. I bet will put a smile on your face too.
I do think for my own sake, though, I’ll stay far away from scooters and segways!