IT HAPPENED TO ME: I'm Living With Retrograde Amnesia

Try to fathom looking in the mirror and not knowing who you were looking at.
Publish date:
June 26, 2015

Ever have a hard time remembering where your keys are or where you put the remote control? Now imagine that’s your identity and personality that you can’t locate.

Imagine looking at a picture and not recognizing yourself in it. You recognize all the other people in other photos and you still don‘t know who that one is. Then it dawns on you, that’s a picture of you.

Try to fathom looking in the mirror and not knowing who you were looking at. Time and time again, it’s a stranger that looks like me.

There’s a cliché’ saying that memory makes us who we are; I disagree, experiences do. Memories are just a part of who we are and memories come from those experiences.

On January 4, 1995, I was involved in a catastrophic car accident. Broken ribs, fractured pelvis and spine, punctured lung, paralysis, deep coma, and traumatic brain injury. I was unconscious for 2 weeks. The longer someone is unconscious, the worse the outcome after they wake; if they do.

After spending 7 weeks in the hospital, from a car accident/brain injury, I came home to reacquaint myself with everything. It wasn’t until several weeks after getting home that I realized that I had no reference to my 24 years of life.

I knew I had amnesia when I was in the hospital, but I was so focused on getting home, that it never hit me how bad it was and that there was more than one type of amnesia. Because my brain jostled around the entire skull, every lobe was damaged and so was my brain stem.

I’m told that I’m still the basic same Sandee I was before the amnesia. Without memories to pull from for reference, I was a blank canvas, personality-wise. I found that I had to become a new version and discovered from other people what the differences were. The memories I get back now have no weight on the person I am now.

What I have is Retrograde Amnesia; from the past. Anterograde Amnesia would be forgetting what is happening now, like in the movie Memento. Being able to keep new memories is a gift and what was and is important.

The first type of memory issue I recognized was language: aphasia. I didn’t understand what words meant at times; didn’t understand sarcasm; I called things and people by the wrong names; and I didn‘t know how to take a joke.

One day it was raining outside and my mom said “It’s raining cats and dogs outside.” I ran to the window and said, “Where?” Mom thought it was funny, I didn’t because it made me feel stupid.

I also had Broca's Aphasia (expressive) -- I had a hard time getting the right words out to get the point across and it got frustrating when someone didn’t understand. It was also frustrating for others who couldn’t grasp what I was trying to say so they could help.

Memory isn’t stored in one area of the brain, it’s spread out everywhere. Sometimes one comes back. It was really strange at first to get a memory back because it was really confusing what was happening and why. It was like feeling lost in time and space. Sometimes the memory came with uncontrollable emotions.

Over time, I noticed that any of my senses could trigger a memories. They came mostly from external cues, sometimes internal cues. Most memories that come back make sense. At times they are whole memories, but sometimes they are partial, like puzzle pieces and they put together a picture eventually.

I went to a family wedding several years ago, in the old neighborhood I grew up in and the church I went to as well. As soon as the wedding organ started I began to cry uncontrollably; this continued through the ceremony. Happy tears you think right? Nope, I sat, emotionally and slightly visually, through my grandma’s funeral all over again. It was horrifying!

Another time I was listening to the song Vogue by Madonna; I had heard it many times before. In a few seconds of listening, 10 years of dance at Henry Ford Community College came back; performances and classes.

The words "bottle of pills" in a poem being read at an open-mic triggered the most horrible images and a huge feeling of guilt and despair. My mom confirmed that, at 16, I was in the hospital for a overdose attempt. I have no recollection of why I did it and no one else knew why either; no note left.

Each memory I get, I may have to relive it again, emotionally. So that pain or guilt or turmoil I had at that experience, I go through it again. It's hard to control. The map of the brain needs to do it of it’s own physical healing. I’ve had people tell me to get over it or move on. It’s not that easy.

A few times I would get a clue to two, and I knew it was related to something, but had no more to go on. Another clue would come and I knew it was connected to that other piece, but nothing else. It took me about 14 years to fully understand 2 specific memories and I can’t express enough how joyous it was to finally get them back, because it was extremely frustrating before that.

One memory started as an odd song with only one verse repeated in my head, on and off, for years. Some humor song about being in love with a rubber doll. Then a radio station and the 1980s came to me; then more lyrics came back. I searched and searched in random word pairings to figure out what it was. I’m not sure, what I did that day, to come across the comedian in the Detroit Michigan area that is responsible for that song. And then it all made sense and I was doing mental cartwheels.

The other one was a man I had acting class with. Triggered by a cassette tape that has his name on it; a mixed tape of songs he made for me because he liked me and vice versa. More memories of him came over time. Some of the best memories I get are tender ones like that. But no matter what they are, even the horrific ones, they are precious because I’ve been given it back because of the exceptional science and healing that the brain does on it’s own. THE HUMAN BRAIN ROCKS.

The changes and memory challenges were weirder for my family than me. They were astounded at the small things: that I hated certain foods I had loved before. I always gave my friend a hard time about liking and drinking coffee; I thought it was gross. I can’t drink enough of it now. I thought my mom was crazy for reading true crime when I was much younger. I not only now read it, but I got my college minor in Behavior Science with a focus in psychopathology.

One of the biggest challenges is when I don't recognize people I should know. I went to my 25-year class reunion and because I had bumped into a few people I graduated with who knew my situation, I sat at a table with them. So many strangers, so many explanations, so many questions, and I still had a great time.

I’m getting older, pain is a constant issue and Alzheimer's Disease runs in my family; my short-term memory issues are slowly becoming an issue. I do what I can to keep my brain strong; puzzles, word games, hidden objects games, and writing.

I love spending time at home with my husband, Rob, and our three pugs and one cat. They are such good therapy for me. Because I am unable to work, I pass the time writing picture books, early reader and teen fiction; with the hope of one day being in print.

Carpe Diem has a whole new meaning for me.

You can read more about Sandee's story here, or read her writing here.