Stories of Amnesia after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
In a matter of seconds, I became a stranger to myself. I miss the old me so much that I question why I would survive the accident only to be forced to live in the shadow of my former self. But I know that the important parts of me were not lost even though it is a constant battle for me to find my way in a world that is moving so fast that I cannot keep up.
Two full weeks between, no clear memory, despite verifiable purposeful activity during the interim. The medical records leave no doubt about the 10-15 minutes of retrograde amnesia of events before the accident. It is harder to verify but there was likely two weeks of post-traumatic amnesia. In between, a life-changing car wreck.
Angela has a period of classic amnesia, not remembering the 10 minutes before the accident and being confused when she got tothe ER. Yet, the full extent of her amnesia was never appreciated until much later, because no one was checking for amnesia in the critical period after her discharge.
After recovering from her bruises, she went back to work, right after the 4th of July, at a time she was still amnestic.
Chris states she doesn’t remember a whole lot before the accident which happened when she was 15.
Chris’s mother states that Chris was in a coma for 3 months.
Chris has no memory of being in her first two hospitals, spanning a period of at least four months. She also says she remembers nothing of her sophomore year in high school (accident happened in January of that year) and has little memory of her childhood.
Now the moment after the collision you are actually still lucid, awake?: “I remember, the last thing before he hit, the kids screaming. I remember that. I still hear those screams in my head. Yeah, I was, enough to get them out and I swear somebody helped me get them out, but evidently not.” Getting the kids out of the car is your last memory?: ” Yeah, and it was actually my first cognitive memory. I had what they call post-concussion amnesia for a good eight months and pretty severe. I actually went back to work with the amnesia believe it or not and they let me do it.” If we’re to take a period a minute after the wreck you would have no memory for as much as eight months?: “Correct. Well, bits, sporadically, because it didn’t make any sense what I remembered.”
When we talk about amnesia there are, there’s the period before the accident. There’s the period after the accident. You’ve mentioned that you’ve had some amnesia for a period of eight months. When is your first memory after that other than that first minute? When is your first memory after the accident? : “I don’t know because it’s, it’s pretty much amnesia but I did Christian camp. Hence that is where the brain injury camp comes from. I did the youth and I didn’t want to let them down and so we did this fall camp. And I shouldn’t have been there. I remember walking around and a gal named Toni who was in psyche ward and I knew her. I took care of her son and so glad that I didn’t run into her when I was there. I remember thinking that. She’s looking at me because she had a brain injury a couple years previous to that. She goes, “you know you’re going to crash.” They were her words to me. And I looked at her like she was crazy. I remember doing that camp and I just remember like from Point A to Point B, I couldn’t remember what I was going for, ever.”
While we were off camera, you had some additional thoughts about the amnesia questions.: “Well, yeah, just a lot of things that, the timelines, are kind of confusing and how to, how to figure them out. I’d say a good year and a half the timelines are jumbled in my head. Even though I remember weeks before the accident I don’t remember much of my childhood, which is a good thing. But part of my injury was because of my childhood, and I’m not going to get into that because it’s kind of bad, but I was in foster homes for most of my early life and so I spent a lifetime processing that, and a lot of that I remember coming back out.”
Now, you said that you were having some amnesia even after you went back to work. Can you give me some examples? Please remember what you don’t remember. (Said with an ironic smile.): “With DHS there’s a lot of paperwork. Of course the upper people in the system had no problem letting me know that they didn’t have the paperwork because billing was done by the paperwork. Incident reports – Procedural things, policy, just everything was falling through the cracks. My priorities, that was one of the things that, prioritizing I think was one of the things I really struggled with. It was more important for me to make sure that people were taken care of than the paperwork turned in. Unfortunately in the real world, the paperwork is important for the company because that’s how they get paid. So, so that was an issue.”
First, it highlights that the timeline for determining retrograde versus anterograde amnesia, may actually be two timelines. The first timeline begins the moment when he struck his head, say 4:30 p.m. The second timeline begins point at his neurological function deteriorates to the point that an ambulance was called, say10:30 p.m. He has very little retrograde amnesia before the first neurological insult, the blow to the head. However, he has considerable retrograde amnesia before the second neurological insult, the increase in intracranial pressure. One could argue that the amnesia between 4:30 and 10:30 is anterograde amnesia to event one, yet I am not sure that is correct. It seems more probable that it is the beginning of anterograde amnesia for the second neurological insult, the increase in intracranial pressure. One would think as important as amnesia is to prognosis, that these kind of issues would be delineated in the treatises â€“ textbooks on neurology and brain injury. I have never found such a discussion in those texts, perhaps because historically so many people with rapidly forming ICP events like DJ, never lived to be questioned about the problems.
He doesn’t remember any of the details himself. He has complete amnesia for almost a month. I kind of remember bits and pieces about Christmas, but after that nothing much. He remembers very little of anything else in December. His accident – January 23rd, 2003. He was 27 then, is 35 now. He was working at the hospital in Duluth at the time. I was in a coma probably – let’s see – I think they said I was probably in a coma until, because I remember – “once I came out of the coma, they shipped me to Milwaukee – so that must have been probably sometime in February or March, March. So I must have been in a coma until March.
Doug had a brain injury, broke both of his legs and was in a coma for about 2 months. Doug had to rely on others to tell him what happened because he doesn’t remember much from that day or from about two months before the accident. Doug suffered from what is known as retrograde amnesia, where events which occur prior to injury are forgotten.
Elizabeth doesn’t know how much posttraumatic amnesia she had after the coma injury. Elizabeth states; “I honestly can’t tell you. I remember, once I got out of my coma I remember people coming to visit me and I remember being taken down to have X-rays or, you know, making sure I took the pills they gave me, relatives that came to visit, flowers that people gave me. I remember all that stuff.”
An important issue in predicting recovery from a coma, from any brain injury, is the length of amnesia, both before and after the injury. Loss of memory for events before an accident is called retrograde amnesia. Loss of memory for events after an accident is called anterograde amnesia, or more commonly, post traumatic amnesia. Gina has surprisingly short periods of both.
Helena states what the doctors had told her after they did surgery “I remember that I was driving and driving carefully and driving under the limit, but we determined later, especially from the weeks before, that I, in all likelihood I had had a CAT seizure and lost consciousness and that, because it felt different than, you know, if you’re going fall asleep or whatever.” She claims to have continuous memory beginning the next day and remembers her time in ICU, which is quite unusual. What Helena’s story demonstrates is that brain surgery and brain damage are not necessarily synonymous. Brain surgery is done to limit secondary brain injury and in an extraordinary case, could limit the brain damage to such an extent, that an individual would be fully aware as soon as they awoke from the surgery. The length of amnesia is a far more accurate predictor of poor outcome than brain surgery and that Helena has memories of the events both before and after the wreck, are both positive indicators.
When asking Ian about his amnesia he responded; “Two weeks before and two weeks after are gone. I have no idea what happened, where I did, nothing. Not, how would you say this? I’m trying to remember how it â€“ I just remember being in the hospital and seeing somebody and talking to somebody, but I can’t remember what it was. All I know is I was on fourth floor of Saint Vincent’s. Went in (to St. Vincent’s) of course the night of the accident, which was October 4, and came home Friday, November 17.”
When asked the length of his amnesia he responded; “On, well amnesia was years before the accident as well because I lost much memory that I had prior to the accident but, little things here and there I did not lose apparently. Or now I have lost them, some of them.But, like for instance, I guess, I was speaking French, which I hadn’t had since â€“ I had one semester in college, one summer semester. And, I was talking to my wife’s friend who speaks fluent French in Canada and, I guess, I don’t remember doing that but, I guess, I was speaking French pretty well. And, and I, I’ve had many people say that I, I sound like I’m foreign accent as well so. ” So you have not just a period of pre-accident amnesia, but you have lost selective memories going back throughout your life prior to the accident?: “Yeah, it doesn’t seem as much as long-term memory losses as much as it does, you know, but about like, I guess, if years are long term, like yeah there’s a lot I can’t remember from the 90s, that I had remembered.But, the thing about this period of time was that there you need I believe you need to be plugged into the time, given a prompt for it and given someone who will tell you about it and such and for that
So you’re, you have no retrograde amnesia, meaning amnesia for events before your injury?: “No.” Do the events that you remember actually coincide with what physically happened to you?: “Yes.” What do you remember of the day before your injury?: “I remember that I went, I supposedly had a date the night before and I went on the date, but the date was a no show, so I called the friend that introduced me to the sup, the expected date and she said he’d gotten called away on some other, some other, something else and that he would not be there. I said okay, thank you for letting me know. I remember that very clearly, then I came on back to the home, to the ranch, to the house where I was living and gave the little dog a bath that night.”
There is sometimes just no logic to amnesia. Kelly asserts that she has a clear memory of the pantomime of shooting the nurse, to be left alone. Yet she had a trach at the time, yet doesn’t have a memory of having the trach removed. While it is possible that Kelly’s memory of the pantomime has been reconstructed, it is also possible that this is a small island of memory in a sea of amnesia. Almost all severe brain injury survivors have some sort of island of memory. The end of amnesia is not when these islands of memory begin to exist, but when continuous memory returns.
As we have discussed in most of our previous stories, the length of amnesia is the most significant indicator of severity of brain injury. A loss of memory for more than a month indicates a very serious injury. He was in University Hospital in Madison just over a month.
Lori describes her first memory from the time of the accident : “My memory is not real clear, because it’s been so long. And I have eyewitness statements, so sometimes I might tell what I’ve heard. What I know that I remember, the first thing that I really, really remember is after I’d been in the hospital for a while and I was in physical therapy, and I was on a balance ball, and I remember just laughing.”
There are primarily two methods to classify the severity of brain injury, the length of coma (or loss of consciousness) and the length of amnesia. In assessing amnesia, it is not so much the loss of memory for events before the injury that is significant (retrograde amnesia) but the length of time before amnesia ends after the injury (post traumatic or anterograde amnesia). So in terms of categorizing your amnesia – and I do this because it is probably the most accurate way to compare the severity of, of injuries – you have only a few seconds of loss of memory before your accident and two to three weeks afterwards.: “Yeah.” It is important to keep in mind that when assessing the severity of her amnesia, the one isolated memory (such as Lori’s the balance ball) does not mark the end of the post traumatic phase. Amnesia ends when continuous memory returns. It is not unusual to have an island of memory in a sea of amnesia, particularly if that memory has an emotionally charged element, like laughter or something negative. The geographic structure of the brain probably has a lot to do with that. The amydala and the hippocampus are located adjacent to each other in the lower brain, part of the limbic system.
Now when I asked the question about amnesia you did pinpoint that you remembered the hay falling off the truck. But are there periods of time, other than that specific frightful moment, that you have a harder time remembering – other things that happened in the month, the six months before the accident?: “People have asked me that question before, and so I’ve tried to think about what do I remember. I remember driving that morning, and I remember moving into my apartment the January before. But I don’t remember very much from my graduation from high school to the time that I moved into my apartment. So that was from the time I was 18 until I was 24.” Would you describe what you don’t remember during that period as something where it’s there but it’s hard for you to track down those memories? Or is it just completely missing?: “I can’t track them down on my own. If I speak to one of my friends or my parents about that time – and that’s the time when I met my husband – if I speak to them about that time and they bring up things that happened, or cars that I drove, or things like that, then I think I can recall.” So it would almost be more that you’ve lost your index of memory more than you’ve actually lost the content?: “Yes.
One life-devastating day I was in a car accident on my way to work. I spent 7 days in ICU in a coma, when I became alert following the coma I had amnesia regarding all aspects of life. I spent many months as an inpatient with various therapies. When I became strong enough, I moved back in with my parents as I continued to require 24-hour supervision.
Now do you remember anything that happened in March 1993?No.So when you say came home from spring break, you really don’t remember?: “I don’t. Actually, I remember one thing, and you have to pardon me because vernacular is not very well, but I was working for my dad on the day of my car accident. Now we were driving home and in Louisville there’s main strip called Bardstown Road and on Bardstown Road there was this oriental restaurant and right behind it was an animal clinic and I thought was just funny.” Animal clinic?: “An animal clinic. That’s all I remember from the whole week, actually, for that whole year. My, my parents with – my long-term memory have to fill in the blanks or change things because I don’t remember them correctly. My short-term memory is terrible. That could be asked by my fiancÃ©e, Becky, and I’m kind of in the middle, it’s completely terrible.” There are many theories as to how islands of memory can appear in a sea of amnesia. It is thought the more emotionally coated a memory, the greater likelihood that it will be remembered. The amygdala, the brains primal emotional core in the lower brain, assists its neighboring structure, the hippocampus (the brain’s save button) in
So you stood up for his wedding about two months before your accident and you don’t have any recollection of it? That’s pretty serious retrograde amnesia.: “Yes.”
Otto’s Wife’s explanation of his failure to remember the conversations they were having, is clear evidence of amnesia. Otto’s amnesia was never formally assessed despite your efforts to have somebody look at it?: “That’s what I understand.” You would tell him something and he wouldn’t remember it.: “Correct. He might remember it for a minute or two but he wouldn’t remember it an hour or the next day. I wouldn’t even say it was minutes. It was talking to a Alzheimer’s or dementia patient that was repeating. Well how is she today? She’s doing really good. Well how is she today? Well she’s doing really good. I mean it was that instantaneous that he wasn’t even cognitive that he was saying, making a question to me.” When asking Otto about the accident he replies: “Do uou remember making that phone call?: “I do remember making that phone call and then from that point I remember nothing. I don’t remember where the accident took place. The only, I guess, the last memory I have I saw the truck that hit us do spins, and I just saw headlights, taillights, headlights, taillights, that’s it.”
Do you remember the game?: “No.” Do you remember the day?: “I only rememberâ€¦ I remember before the hockey, I dropped off my wife at her dad’s house and I don’t remember from then on. I drove to the right address. I passed a friend who was going to work at the emergency room that I got flown to a couple of hours later and he came out and told my wife we’re holding him down and so on. I don’t remember that. I don’t remember skating three games. I don’t remember most of my hospital stay. I do remember seeing some friends, some family. I don’t remember all of them. She wrote down names of people that visited, you know. I’m shocked I don’t, I don’t remember seeing them.” Do you remember being in Delray at all?: “I don’t know. I remember seeing certain people. I don’t remember. I remember coming home.”
One of the least connected of the dots in identifying brain damage related amnesia is the role emotions and adrenaline play in the islands of memory in a sea of amnesia. The more emotionally charged a memory, the more the amygdala helps the hippocampus imprint that memory from short term to long term memory circles. Likewise the more adrenaline involved in an experience, the sharper the focus, the clearer the memory image in what is otherwise a foggy mess. Quinn’s recollections of bits and pieces of memory on his readmission to the hospital show clear evidence of the emotions role in memory formation.
I focus much of our TBI Voices inquiries around amnesia for specific reasons. First, I believe that it is the best way to categorize the seriousness of the injury. The longer the brain is unable to normally imprint memory, the more likely the injury will be serious. Consistently reporting all that I can about the length and nature of the participant’s amnesia, gives a scale of comparison between our individual case studies. Further, I have found that amnesia is never well documented and it is hoped that by continuing to ask and probe questions about it, I can help to change the methodology for identifying it in the brain injury population.
I believe that the nature and extent of amnesia is a better predictor of severity and outcome than the specific pathology in the acute phase. So I have asked each of our survivors, as I asked TJ, about the nature of his injuries and about the extent of his amnesia:Do you remember being at Spalding?: “A little bit.” What do you remember about being there?: “Not really anything. It’s really a little bit.” You have your step-mom in the background, giving you a, a little bit of prompting.: “I just need her for the dates. The dates and times and so.”