I used to have the most amazing memory. I had friend's phone numbers memorized, as well as all my credit card numbers, and my driver's license number. I could watch a movie once and recite all the one-liners on command. I could read an entire book in a day, or over the weekend (depending how long it was). I could multi-task like a mad woman, juggling five things at once. It was easy for me, it was my normal.
All of that changed when I slipped on a patch of ice one cold, February morning. I landed full-force on the back of my skull and sustained a traumatic brain injury (TBI), along with numerous other physical injuries. I had no idea the journey that I was about to begin, and the struggles that I would endure.
The most immediately apparent effects were short term memory loss, cognitive functioning, and aphasia (not being able to recall words, or using the wrong word). I was originally told I had a severe concussion and that most of my symptoms would resolve themselves in a few weeks.
All of a sudden it was eight weeks later, and I was still struggling. At that point, I had an MRI to rule out any major bleeding or damage. It fortunately came back clear, but that's not to say I didn't have minor tearing, which does not show up in imaging, and can cause long-term problems.
What was clear, was the fact that this was a traumatic brain injury, and there are no clear cut "rules" on recovery. No two TBIs are the same. They have a lot of similar symptoms, however, the combination of those and the length of time it takes to recover can vary greatly.
I know survivors who had mild TBI (like myself) and have taken years to get better, while someone with a severe TBI (in a coma for an extended period of time) was almost fully recovered in a year or so. There is no magic formula, and no guarantees that you will ever completely recover.
Actually, most TBI survivors never make a full and complete recovery. They are left with some part of their brain impaired. There are coping skills that we can learn to help us: such as notebooks to help us write everything down, GPS to help keep us from getting lost, calendars to keep track of appointments, and the like. However, even with all the coping mechanisms in the world, there is no substitute for the way it was before. I am now the post-it note queen.
Adapting to your "new normal" is incredibly frustrating. Especially when the "old you" is so vivid in your long term memory. You know how you used to function, and you expect that part of you to come back at the snap of your fingers. But it doesn't. It takes time. Lots of time. And the more time that passes, the more frustrating it becomes.
Julia Potocnjak-Overn from Tyler, Texas sustained her TBI after a car accident two years ago. She sums up her memory:
"My memory is kind of like a garbled sentence. Bits and pieces here and there, but no clear thoughts. Lots of half thoughts, or thoughts that disappeared into the abyss. I used to get frustrated by having a difficult time remembering daily tasks, questions, or even trying to find the right word."
Heather L. George from New Brighton, MN suffered two TBIs within two years of each other, in 2012 and 2014. She struggles with memory issues like I do, and has found a useful coping skill:
"I used to have a very 'tape recorder quality' memory, now I expend a lot of brain energy trying to make sure that I haven't forgotten something, or panicking and literally losing sleep because I fear that I may have forgotten something.
When I pass the stove on my way to let the dog outside, I set the stove timer so that it reminds me to let him in. I use the stove timer a lot to remind me of things such as: when the oven should be done preheating, when I should check water to see if it is boiling, when I should tend to items that are soaking, etc. It works as long as I remember WHY I have set it. If I don't, it at least makes for an amusing treasure hunt."
Kara Harkins from Lexington, KY suffered a TBI in 2012 after a car pulled out in front of hers. She has no memory of the accident, and presently suffers from memory issues:
"I have short term memory issues. Not tragic like so many stories I see and read, but because it is so invisible very few people understand or even try.
I get extremely frustrated trying to learn new things. I can't keep up with notebooks (I loose them or don't remember what the notes mean). I survive on lots of reminders in my iPhone. My issues are diagnosed as permanent and I am on disability. My 10-year-old daughter is my biggest reason for getting up each day and provides as a great source to help me recall things & reminds me of things."
One of the worst things you can say to a TBI survivor is: "Oh, I forget things all the time too," or the like. I realize you are trying to empathetic, but honestly, it feels like an insult. I can assure you, it it not even close to the same memory issues that I am dealing with.
I know because I remember what it was like to have a normal "absentminded" moment where you forgot where you put your car keys or who you were supposed to call back. You eventually recall that information and carry on with your life. This "new normal" with my memory is so very different from that. It is like a black hole that the memories just seem to completely disappear into. Without a trigger (like a Post-it note, or an alert in my iPhone) I will likely never recall it.
You may also like to read: "Lost: Life With a Traumatic Brain Injury"