Friday, June 28, 2019

Living with brain impairment: dumb stuff

Living in a post AFE world is really strange. I'm lucky to have found a great online support group of other survivors and have connected with several of them. I know a lot of them go through similar things and some don't have much impairment in any area. We really are all different, no two paths or the same and sometimes that's lonely.

I was talking to someone the other day as we were waiting in line to check out at Target. Just benign chit chat with a stranger and when the cashier gave me my total, I completely blanked out. Suddenly I didn't know where I was, if I had my kids with me, what I'm supposed to do, how do I pay, why am I buying stuff, what do I do with this stuff, how am I going to get home, etc.

The closest thing "normal" people have to relate to is you know when you take a nap and wake up hours later having no idea what time or day it is and you felt like you've slept for a decade? It's like that, but scarier.

This woman looked concerned, obviously, and asked if I was OK. I said I was but I'm just forgetful (haha) and I struggled to figure out what I was supposed to do. Thankfully, she was a decent person and helped me use the card reader because I couldn't figure it out, it was like looking at a foreign object. I have my PIN written in marker on the front of my card because I can't remember it anymore. By this time Olivia wandered back and she helped me get back to the car. By the time we loaded things in, my memory "snapped back" and I knew exactly where I was, how I got here, who I was with, my plans for the day.

This happens all of the time. I often have people say, "well you look normal" and I do. I look normal. Looking at me you would never know this happens. You wouldn't know sometimes I forget how to get dressed. You wouldn't know sometimes I forget how to brush my teeth or how to fix my hair. You wouldn't know that sometimes I can't tie my shoes or I can't find my way home. You wouldn't know that I can't always tell you my phone number, address, or birth date. I know I have four kids but I don't always know how old they are or when their birthday is.

Sometimes I'll go to a doctor and they'll give me instructions on what to do with my next medication. I won't remember it. Sometimes someone will explain to me how to do something, even easy things, I won't remember it. If I'm doing any kind of an activity (typing, texting, scrolling on my phone, cooking, putting things in my purse, putting shoes on, etc) and you're talking to me about something? I won't remember it. If we're in a crowded place and you're talking to me? I won't remember it but I'll also struggle to follow because I can't focus on just you. If I'm reading a book I sometimes have to read chapters four or five times before I understand what I just read. Sometimes I never do.

I can't put those numbers in order. I was playing a few weeks ago and realized that's a good example of something I can't do. I can't tell you which is the highest or lowest number. I can't always count coins or cash. I can't do any math in my head. I can't figure out a tip. I have a hard time dialing a phone number. I can't read recipes or follow them.

I could go all day with things that I can't do. What I can do is try to help myself. A couple of years ago my friend Shirley bought me an Erin Condren planner and I loved it. The following year I bought a significantly cheaper store bought knock off and I hated it. Last year I bought an Erin Condren planner for myself because it REALLY helped me stay on track. Every appointment, every thing I need to do goes in my planner. I need to grocery shop? I put it in there. I need to run an errand? In my planner. Olivia needs an outfit for band concert? In my planner. Literally EVERY THING goes in my planner. The entire family knows my planner is basically our family's Bible. I'm not kidding. If you ever hear me say, "I'll remember that", I am lying to you so I don't look impaired and I will not remember.

I hate, hate, hate looking like I'm not normal. I don't like looking like I need help with basic, common, dumb stuff. I know that I DO need help, I don't like people seeing me in that moment, I feel self conscious and dumb. Rational? NOPE. But it is what it is. 
So about a month ago I ordered my 2020 calendar because I already have doctor appointments lined up for 2020 and some book reviews, school calendar stuff, etc. It was time to get my new one. 
Look how pretty it is! I'm all about colorful stuff so I went with this one. AND put my name on it just because I could. 
I also got some notepads (because I write a lot of random notes of things to remember), bookmarks, and some address labels. Want a really good gift idea for me? ADDRESS LABELS. 
Isn't it pretty? Truly. It has a lot of sections in it that I didn't use in my last planner but I want to use in this one. I told my therapist I'm going to start a grateful journal and write things down that were good from each day, and the worst thing from that day and hopefully one outweighs the other.

Do you have ways to stay more organized? I'm taking ideas now because I'm really struggling.


Beth (Coffee Until Cocktails) said...

I love planners. I still use them even with all the digital stuff we have nowadays. I think if it helps you, you need to do it. And it helps so much when you have such a fun pretty planner like that!

Shooting Stars Mag said...

I always tell my family I'm like a baby - "out of sight, out of mind" which is why I write notes for myself and I have a physical planner, etc. Obviously I can't even fathom your situation and I hate that you have to go through that. I'm glad the lady at the store was so kind - more people should be like that, because you just don't know what someone is going through.

I love your new planner though, and I'm glad you have some new sections to use. The gratitude journal sounds like a lovely idea. I've always thought I should try that...maybe someday!


coach-daddy said...

I love that you've taken such a positive approach to a challenge. And a good organizer is everything! I struggle with them, though, because I start in them, then stop. There are many organizers in my closet with stuff in them for a month or two.

I've done better with my gratitude journal, but not perfect. If I don't write things down, I will forget them. Simple as that.

My only suggestion is to also maybe use index cards. If I have a project, I get it out of my head and onto paper. On index cards, I can organize the steps and make little check-off boxes by each item.

San said...

I love that a planner helps you with your day-to-day... I mean, a lot of people use planners, but it's REALLY helping you with the stuff that you can't remember or forget. How wonderful!

Shellie Lynn said...

This sounds absolutely devastating!! I'm so sorry for all you have been through! But, oh my gosh have you done some amazing work to keep yourself on track and keep going every day. Not everyone could do that. And if something as simple as a planner is helping you, you are doing FREAKING amazing. Sending you many warm and healing thoughts as you continue on your journey. 💜