By: C. M.
Before I became ill, I was like my own little Google. I knew so many random facts. I easily studied for classes and exams. Had no difficulty creating a presentation and getting up there without notecards to cue me. I remembered every birthday, holiday, test, big meeting and person’s name. Until pain happened. Life with “pain brain” is complicated. Here is why.
1. I fondly remember my life before becoming ill and how on top of everything I was.
I also remember the earlier years of my condition when it seemed my cognitive abilities were not being adversely affected by my medications or pain. I graduated high school with a 4.2 GPA, despite missing 40 days my senior year due to my, then, undiagnosed conditions. I was accepted to almost every college I applied to and knocked my ACT out of the park. I continued the trend in college. Despite being sick, I was still performing well. Fast-forward four years after graduation and I don’t know who that person is anymore.
2. My cognitive abilities now pale in comparison to what they used to be.
When I brought up the concern of my declining memory to my physicians, they told me it was expected. Why? Because my body is so stressed by pain, that all resources are diverted to handling it, leaving my memory, speech and ability to learn deficient.
3. I wouldn’t survive without calendars and planners.
Now, I rely heavily on multiple calendars, both physical and digital, as well as an Amazon Echo and the kind reminders of Alexa. If it weren’t for the availability of reminders on every device I own, I would seldom arrive anywhere on time or complete projects.
4. I must reread things multiple times to absorb and understand the content.
Even then, if it is a bad day, I do not retain the information for long. If it is a really bad day, I won’t even remember what I was doing, let alone how to apply to an upcoming project or at a meeting.
5. Conversing is hard.
Finding the right words for what I am trying to say is difficult. Following what others are saying is also problematic. If there is anything else on my mind or distracting me, I cannot follow the conversation. I ask for people to repeat things, admit I am not understanding and request a simpler explanation for things.
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6. Speaking is physically difficult.
I know I mentioned that conversing is hard, mostly due to my inability to find the right words to describe things; however, there is another component to speech that I find far worse. Stuttering, slurring my words and jumbling things together. It makes me sound inebriated and I hate it. I feel so self-conscious when I struggle to pronounce things or put words in an odd order for no apparent reason.
7. I forget things quickly and easily.
I ask my friends and loved ones questions repeatedly, every day. Clarification of plans, what’s on the grocery list, where I need to be for Uncle Bob’s birthday or that one story that happened that one time.
8. I refer to people and places by very descriptive adjectives, not their names.
You know, like my coworker, what’s his name? The one with the black hair and funny, tortoise-shell glasses. How about my favorite restaurant? You know, the one across the street from the yellow barn with that yummy kinda fried but not like in a fryer chicken. Why? I don’t know. How can I remember such descriptors but blank on the name “Jim?” …I have no clue.
9. Thank God (or Apple/Android) for text messages and email.
You know that problem following conversations and speaking? All is well when it is in text. It saves me the embarrassment of stuttering, and I can also re-read things whenever I want, sparing my friends, family and coworkers the pain of asking them 5,000 times about something.
10. I repeat things.
Since I forget things people say, I often repeat things because I can’t remember if I said it already. It isn’t until people tell me I have already mentioned it that I realize I forgot telling them. Sometimes I only say it twice, but, I have repeated something as many as five times a day to my dear fiancé and he kindly reminds me each time after the first three.
11. Spell check is the best invention. Ever.
I do not know what I would do if it were not for spell check. The pain brain can really kill my ability to spell even the simplest words and I would sound like an incoherent mess trying to email coworkers or communicate with friends if it weren’t for that amazing little red squiggly line.
12. The upside, I can sing any song to you, anytime, anywhere.
Weird, right? I don’t know why, but, every song I have ever listened to, I can sing it back to you. Identify it by the first few notes. Maybe it is because music is my solace when I am shutting myself away on a hard day. It helps me focus when I need to get something done and helps me better understand my own feelings because songs can put things into words I can never manage to say. I have no idea how, but, my ability to know lyrics and songs hasn’t been touched at all. Bad days, good days and every day in between, I can sing you any song that has touched my life
in some way. Karaoke, anyone?
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