Stories of Memory 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.
I could remember everything about every loan that I was working on at the time before the accident.
Two full weeks between, no clear memory, despite verifiable purposeful activity during the interim.
Angela’s story, as all stories, jumps around between present and past. Questions about past memory problems often lead to answers about current memory functioning.
After recovering from her bruises, she went back to work, right after the 4th of July, at a time she was still amnestic.
I didn’t remember anything about what I was doing or remember anything about what I should be doing.
I won’t remember what I said, I never remember what I said, but I have lived a good life, I am still living a great life, enough that I know good things about the world, whatever the conversation is, by shifting the attention from whatever is taking place at the table that is extremely overwhelming for me, I can take control by talking myself
A store is a distraction filled world, with countless decisions to make, which most of us give little thought to. Those little decisions challenge the frontal lobes, interfering with memory capacity and the environmental challenges can cause meltdowns and huge errors in judgment. Angela recounts some of these types experiences including a trip to Ikea where she went for one thing and was at the checkout with a pallet full of furniture.
Brain injury, brain damage is thought of as a thinking disorder, a problem which effects memory, concentration.
Most cognitive challenges are far more subtle than what an Alzheimers or severely learning impaired individual might have. Much of the brain may be unaffected by even a severe injury, including long term memory and communication ability. Both Angela our first case study and Betty are perfect examples of that.
Betty states; “I see myself having improved greatly and one of the biggest things I keep in my mind is I’m open and I look forward to improving even more. So the deficits that I do have now, you know, as far as memory, I remember, I, I mean I keep a date book with me at all times, I used to be very upset that I had to write things down, but now I keep it with me and if somebody says are you doing something next Friday, I can open my date book, see if we’re free. Try to work on my memory. I’m trying to improve, trying to improve my short term memory, my long term memory is basically pretty good but the short term is what I have problems with.”
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.
Did you remember your friends? “Yeah, just not their names. I remembered their faces, but there was some I did not remember really well.”
The Chris story begins with the contrast between the absence of memory for the survivor to the nightmare ordeal of the parents of someone in a coma. Chris was hurt in January of 1998, when she was 15 years old. Now she is in her late 20’s. She was a pedestrian, walking over a bridge when a drunk driver jumped a curb, hitting her from behind. Her Mom heard of the accident from a friend who was listening to the police scanner, before she realized it was her daughter.
Chris lost almost all of the memory of her sophomore year in high school, both before and after the January accident. Her physical injuries include noticeable left sided problems, particularly her left arm. She has balance problems, can’t run nor stand on one foot safely
Before the transfer to Clearview, she had been at the combative stage, aware but unable to speak. Chris’s Mom continued to visit every weekend and has nothing but good to say about her time in Clearview. It is while she is in Clearview that Chris’s memory begins to return. She remembers the transition from a wheelchair, to a walker, to a cane.
Doug discusses the effect of the drugs he was prescribed: “And so, I’m browsing through these gunning things and it just dawned on me: I didn’t feel like this until I started taking the medicines. The memory loss – Xanax was causing severe memory loss with me, so I started go looking at side effects on things. And sure enough the side effects is what I was getting off the medicines.”
So, your first island of memory after the accident is actually about 7 to 8 weeks post?: “Almost, almost ten weeks.” Do you remember coming home from the hospital the first time at three weeks? : “Yeah I remember not; I remember being glad to be out of the hospital but I remember not being so glad to, uh, going home.”
How is cognitive therapy different from speech therapy?; ‘Well, I was having some, I guess you would call them environmental issues. And a lot of them were normal things that you can fix. Like my memory â€“ if I parked my car, I couldn’t remember where I parked it. And so we practiced. I wouldn’t remember where I’d park in the mall. We would walk in the store and walked around and I had to find these different things. I mapped them out ahead of time. And then when we were done we’d walk out the door and (the therapist said): “All right find your car.” And the first couple of times I didn’t do so well, but it’s retraining yourself to remember. And then as far as the behavioral, coming up with like, kind of just plans, for myself, little time outs for myself. And I take them to this day and I push myself. And everyone that I work with knows that, if I don’t call you back it’s because I’m overwhelmed.
Did they give you a series of different medicines in terms of treating the migraines?: “Oh yeah. I had morphine. I had, Percocet. They tried everything, but I was to the point where the drugs were doing more damage than the headaches were because I wasn’t functioning. I even got the marijuana card, thought that would do it, but that was a mistake. I mean, my memory had issues before? I mean, I couldn’t remember anything. I know people say that’s a great product for them, but it didn’t work for me.”
DJ explains the onset of his memory loss; “So from the time I got home, into the shower, and then subsequently getting into an ambulance was maybe an hour, and already I had fallen apart to the point where I don’t remember anything from somewhere around 11:30 on the night of October 8, 2005, well into November.”
When asked about the day of his accident this is what DJ remembers: “Not 100 percent sure, I know I hit my head that day, the reports say I hit my head that day, and it was around 4:00, I say 4:30, whatever. I really, I don’t remember anything specific about that day, except I know I crawled up onto the, the form, it was metal strapping around the form that we had to dump the concrete in and I was literally straddling it with my feet. I do remember that. I do remember it being dark, so there could be a period of three hours that I may have zonked out, don’t remember.” DJ continues; “So, the story that you told us about being in a boat, going underneath the bridges, these are things you’ve learned from other people who were with you?No, I remember being under the bridges and I also remember the storm coming in. So I remember the storm coming in, and I remember it being very violent. To this day I can see the lightening underneath the 405 Bridge going into Cape Canaveral Air Station. I can still see the storm in my head, and it was violent, and we were being thrown around on that 27 or 30-foot boat. I remember that, and then I remember a little bit later on literally straddling the form, on maybe two inches of
DJ explains he did not know his parents : “They came to the hospital for the next seven days and I didn’t remember my mother. I remember my father though. And I’ve read, in some articles, where they say that the person that disciplines you, when you were younger, is the person when you come out of a coma that you will recognize, and that would, that would be my dad. But I did not recognize my mother.”
Do you remember anything about HealthSouth in Melbourne?: “All I remember about HealthSouth was I made cookies, I remember that. I did Sudoku. I did check writing. I remember the physical therapist, she was a pretty girl. I remember her telling me something that was very important and I still use to this day. I was still having some very extreme hard headaches. I was taking a hydrocodone back then and, you know, some powerful drugs. But again, I didn’t know they had shot up my neck, but I would fall asleep after doing almost nothing.” HIs memory returned once he got to Center for Comprehensive Services, Subacute Brain Injury Rehab â€“ which is in North Tampa, Lutz, Florida. So the time you get to North Tampa is just before this sort of light went on in terms of your memory kick in?: “Kick in, yeah, yeah. It was a week or two I was there and I’m literally laying sideways in bed at the rehab facility and I, I can still remember, I don’t remember exactly what opened up, what information came back, maybe parents, maybe family, I don’t really remember. I just know that, that one day something opened up and I proved it to the staff. I said, you know, my name, address, phone number, whatever. I don’t remember
What have the neuropsychologists told you about your MMPI profiles?: “I don’™t think they discuss them. I think they discuss the neurocognitive deficits more than that. I mean they just say that your memory, your short-term memory’™s bad. There was some discussion, that nurse case manager I met in November of ‘™05 said that I was a 12 drink a day alcoholic as reported by my parents who never reported anything like that. Once again that’™s just another case of bending the truth a little bit. It was proven in one of the neuropsych evaluations that long-term memory was almost intact. I mean you can see how much I’™m filtering to you about my journey and, you know, long-term memory but you asked me when we came back on what were we talking about? The short-term memory’™s just not there. So they determined that the long-term memory deficits cannot be from alcoholism or anything like that, so I was, I was very happy to read that.”
DJ could not be a waiter anymore. Not only would he have trouble remembering orders, the attentional demands, as the pace and the noise got greater during rush periods, would push all of his cognitive functioning to its breaking point. DJ considers his short-term memory to be one of his biggest ongoing deficits. Short-term memory problems do not have a single cause. Many times the memory centers are working to some degree, with the real problem stemming from the inability to focus on the information that should be stored, at the time the information is streaming by. Tools he uses to help him remember: “I had sent one to one of the caregivers at Communicare and she lived right around the corner from me. When I eventually moved out, she brought me this little teapot, twisty thing. Sodas were another thing, like you take a box of sodas, you get them from the store and they’re warm, take a box of sodas or one or two and you place them in the freezer. Brain injured, forget it, ka -blewy, they blow up and they create quite a mess. So she gave me this little timer and I do use that for certain things now where I’ll take it with me and I know if that goes off, I got to get back to the kitchen. It looks like a little teapot, and
While the low-tech option of the teapot timer helps him in the kitchen, DJ has found that his PDA is very useful to adapt to his memory deficits. DJ explains: “DJ discusses more tools that help him remember. “What works is you tell me we’re going to meet again tomorrow at 1:30, and I know we’re not, but it’s got to be on my PDA phone. The doctor scripted one in March or August of 2007. They are coming up with these super-gadget phones now and so we went to Verizon with a speech pathologist and they wrote a script for the Verizon 700 Trio, Palm Trio 700 WX. I use it with my grocery list and I literally take my phone in the kitchen. I go in the refrigerator, there’s no milk, you can hit the task button, you have to build a list, so I mean you can have a hundred items.” What else do you use the phone for?; ‘The calendar. I have my Yahoo calendar on there that I can go right into actually my Yahoo mail account and use my calendar. Your email of when you were going to be here stayed right at the top and I deleted around it for several days. The email is very important to me. Facebook.’
Do you find that because you are creating written communication so much of the day, that you are beginning to remember better?: “I mean you, look at how much I’m quoting my medical records and what I did on July 9th of 2005, you know, I, and I was at a baseball game. I was at the Red Sox versus Rays game on July 9, 2006, I’m sorry, 2006. But yeah, I find that repeating it over and over again helps me to where I know where my settlement was done. I know how much it is, I read it all the time, I know what it should be.”
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.
As one can tell from his explanation of this recipe, his memory functioning is far better than one might assume seeing his physical limitations and knowing the length of his inpatient stay at Clearview.He states that he doesn’t have to write everything down. He learned about the time for our interview from the facilitator of his local TBI support group and told his aide, who wrote it on his day planner. Doug was on time for his interview.Doug was wearing a Packer jersey and we interviewed him in the middle of the Packers’ playoff drive to the Super Bowl. As a check of his memory capacity, we asked him about the Packers. Doug states;”It’s pretty exciting that they’re going to the Super Bowl. I would not have thought they were going to the Super Bowl with 14 players being on injured reserve earlier in the year, but it’s pretty amazing that they’ve come this far.”
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. I do have the short-term memory and a lot of things I can understand now, but there’s with the short-term memory, me talking to you or other people, I can’t remember certain things. I remember some people. I couldn’t get their names all straight, but I knew them by seeing them. Some I called the wrong name. Elizabeth states that once she was outof her coma she remembers all the people came to visit and what they brought to her.
After I left the hospital I could not stay alone, and my husband worked different shifts and somebody had to be with me 24 hours a day. So they took me to my mom and dad’s house in Wisconsin Rapids and I saw the speech therapist down there, and he was good for putting up with me. He was working really hard with me to try to help me understand, and because of my short- term memory, not being able to remember things, he’d have me write things down, you know, and try to figure out what he said and tried to repeat him, and so that took about two months it took to do that. And I was doing the best that I could, and when he said pretty much this is the best you’re going to get, then it was time to move, time to move back home. Elizabeth explains what she had to do to get back to work after the first TBI; ” I had to go see a therapist, a speech therapist so I could learn to talk better, so I could try to understand more things, and then when I got done seeing him then I went back to work in June.”
Like other of our interview subjects, her memory and comfort levels are best when she is doing the talking. Elizabeth explains; “Talking gives me the attention with someone and it makes me be able to try to understand more and get it the right way instead of totally losing it. This is going good (discussing our interview and her cognitive functioning during it.). Wonderful things that I can think about that I understand and it’s easier this way where to like writing stuff down. Write a question down and I can look at it and it can take sometimes ten minutes, sometimes a half an hour, well what is the right thing to say to it or to, it’s like I forget. My, my understanding of things.” Memory can be broken up into a lot of different terms, but in lay terms, it is most helpful to talk about the memory that’s lasts 30 seconds versus the memory that last five minutes versus the memory of events of yesterday. While all of those are types of short-term memory, they involve distinctly different functions. For Elizabeth, she didn’t demonstrate either the 30-second lapses or even the five minutes. When quizzed, she remembered parts of our conversation, even those parts where she wasn’t doing the talking for up to five
Elizabeth explains how her memory doesn’t work right when it come to simple household tasks such as where she puts things and how to do dishes, laundry, cooking, etc.: “I try to organize stuff and it’s like putting my keying down on the table. I can do that every day and I can put them there and I can walk right by them and I can’t find them and that’s doing dishes, doing laundry.”
Two brain structures and the way in which they communicate with the frontal lobes are undoubtedly part of her picture, based upon the significant functional changes in her memory and the issues she has with stress and anxiety.
In evaluating the severity of his injury, it is important to note that his retrograde amnesia (loss of memory for events before the accident) is likely a full month. It is at least two months after his accident before his memory returns. Brain surgery was not necessary but they did put an ICP pressure monitor in his skull.
His mother explains his state of mind when he was transferred to Norwood hospital; “He had problems with being angry, impatient, confused. He still didn’t necessarily recognize us on a consistent basis. He would forget where he was. He’d forget if people came to visit.”
Fred’s Mom explains: “Well, when he came home he was doing very well, I mean for the most part. I would say he was – personality wise and everything he seemed a lot like the boy he was. He still had his issues. He still had to deal with confusion, anger, forget, you know, forgetfulness. And he would get frustrated because he would see where he was lacking at times. But at that point we always had a positive attitude coming into that, that it would always get better, and that’s what we always just kept relying on.Anger. I don’t know if he was violent per se. He – they – apparently brain injury people do have violent issues. I know in the hospital he would do that. They had to restrain him a lot and they said that was normal. At Norwood he, he would verbally lash out at times but not physically. He never lashed out physically at anyone. He looked kind of scary in a way in, in the fact that – because mentally he wasn’t, you know, coherent so he’d have this look on his face which was not, you know, I, I don’t want to say – I don’t know if for lack of a better thought, intelligence, you know. He looked lost and, and kind of like a wild man, you know? That was, that was probably the
When asking Fred if his memory is affected he responds with; “Not as bad as I used to. I used to forget things really badly. My medication. I’d forget to take my meds at night and, you know, becausebecause I take my medication at night and, you know, I would just, some nights I thought I took it, but I didn’t. I’d make, I told myself I took my meds but I really didn’t. And I would just forget to take them. One night I took my meds twice.My memory has improved. I believe that (therapy) has definitely something to do with it and I burned into my brain, too, with my medication, because I have the, one of those holders that says, you know, S, M, S, T, W, T, F, S, or something like that. And, so, I know what day I’m on and I have it figured out in my head.
Fred comparing his fathers TBI to his (fathers was never diagnosed or treated);”I have a better memory, which is funny, because he doesn’t have the best memory. He’ll, he’ll forget to do things and there, and then his concentration, he can’t multitask very, he can’t really do more than one thing, and he’ll, yeah he starts one thing and then forgets he was doing something else, and.
Gina was in Theda Clark for approximately 9 days. She actually has a memory while still there. Gina states; “I remember the – my first memory actually is the last day I was there and I was being, what do you call it, told I had to go to Green Bay. I remember actually sitting in the bathroom on the toilet and they were removing stitches from my head, which was very painful, and they forced me to look in a mirror at myself; because apparently I had been feeling around where the stitches were. I was aware that they had shaved half of my head.” It is not unusual to have an island of memory during a period of amnesia when a particular memory is emotionally charged. This occurs because of the role of the amygdala’s (one of the brain’s most primitive emotional centers) role in memory creation. Both the amygdala and the hippocampus are located deep inside the brain, in the limbic system. If a memory is particularly emotionally charged, the amygdala will help the adjacent hippocampus to imprint this memory. This is likely the explanation as to why she would remember just this one thing from her time at Theda Clark. Her memories of Green Bay Hospital are as she states; “I remember the first night because they put me in this
Regarding performing her job as an insurance agent she states; “Before this accident, my boss used to refer to me as the walking manual because he could read off a situation, per person when they called in and I would know usually one or two companies that would probably offer the best rate, a couple companies that they don’t qualify for, the percentage. Like if we can try to sell multi policies, to try to sell them a home, try to, home policy or renter’s, that type of thing. (I was) able to just in my head while I’m talking to them, say you got a 20 percent discount if we do this; this is approximately what it’s going to run and this is what your discount would be and I could just do that all in my head while I was talking to them. Now, I, I’m not able to do that. I still know what companies but as far as being able to predict which one is going to be the better option, no way.”
Her husband relates and example of her memory problems; “It was really confusing seeing her frustrated, you know, her frustration. I do remember just issues with her memory. She got a bowl of cereal and took the milk out of the refrigerator and got her cereal ready and when she was done she put the milk in the cabinet and the cereal in the refrigerator and, you know, confusing things like that. And it was hard to see her struggle with that.”
When taking phone calls Gina had trouble remembering; “I would forget to ask what other changes they wanted to make. Are they replacing a vehicle or just adding it? What deductibles do you want and then if they did call and ask a question about do I have towing? Do I have rental reimbursement, that type of thing or what specifically what does uninsured motorist or specific coverage’s, what exactly does it cover?” She continues with stating; “So he had me write it down, every single thing, and get phone numbers. That was the big thing. Get the phone number of where the person can be contacted because if I forgot something or it didn’t seem”
Gina explains that when her routine has been changed for her she has difficulty adjusting and forgets things; “I didn’t know what to expect with my son and with the schools and the program. I had a whole list of questions that I was going to ask which I had looked online at the school already, how they were handling some things but I had questions and I forgot my list. So then trying to recall what some of these questions were threw me off because, and then I got home and realized I didn’t even ask half of what I wanted but I wasn’t happy. Part of it was her, part of it was, a lot of it was me because I didn’t get my questions answered but that’s not her fault. I forgot the list.” She still has major concerns about her memory.She states; “It’s, I have, my memory is bad. It’s getting a little bit better. My biggest thing that I have learned to do is write every single thing down. I used to be able to remember phone numbers off the top of my head. Now what I have to do is they give me the phone number and I have, I, he had me repeat it. I still do to this day. I’m still, I’m so used to it. Just repeating everything. They call in a change or have questions, a lot of times before I answer it, I’ll repeat the question
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. I was on neuro ward for one day, and then I went into rehab. There is a part of my brain that absolutely did not work; it was black. And there’s another part of my brain that was struggling to identify things that would keep letting me know that I was alive and that my brain could function in some way. So I kept journals and I have a little part of my journal that’s called jokes from ICU. And that was one of them, I was thinking, you are barely conscious and yet you’re aware that they’re doing this psychological inventory.
The puzzle in this story is why a neuropsychologist would think she could have done this job? Key to valid neuropsychological testing is that everything is done in measured time. While the neuropsychomotrist isn’t being time in the same way that the patient is, the time stress would still be significant. Further, accuracy is paramount. Memory, especially memory for new learning can be expected to an area of deficiency in someone with Helena’s weakness. Further, as shown by the testing when she was the test subject, speed of information, numbers and multi-tasking are areas of relative weakness.
He says that he remembers about half of his six week stay at St. Vincent’s. when asked what his first memory was he responds; “It’s hard to say. Well, I got things â€“ what I’ve been told and what I remember they’re just kind of overlapping each other. So I’m trying to figure out which is the memory, which part is what was told to me is. That’s kind of hard to do.”
When asking his friend “Did his memory started to improve then, too?” he responds; “A little bit. He started recognizing people and putting names to faces but it took him a while and that included family members.” He also states that it took about a week for him to know him.
When asked “Do you have problems with forgetfulness?” Ian responds; “Yes. Sometimes it could be, say, somebody tells me their name. A few minutes later I can go do something and come back and it’s like, what was your name again? And it’s, it doesn’t or a phone number and I forget it. There’s some things I’ll remember every time you ask me, and there’s other ones you tell me and within seconds it’s gone. I have no idea. And I know my, my wife and my friends, my mom and dad and everybody that do know, know me, they said Well, I just told you 10 seconds ago. Sorry, I don’t remember it. And, and then there’s sometimes where they can tell me it, I can’t remember it, and the next day when I wake up it’s like oh, I know what that is. It’s like how’d that come in there?”
Thus, I asked him whether he actually remembered what happened in the wreck: “No, but oddly enough I do, I did remember the computer on the seat and reaching for it. I don’t know how long after I came out of the coma I was in but I told a friend of mine what happened. Now, I don’t remember that now but, I remembered it oddly enough shortly after the accident.” Do you remember anything else in the month of your accident â€“ October of 2003? “Yes, actually oddly enough too, I remember two days before that helping move some furniture and such. It was for my younger brother and I was with my brother-in-law and he and myself, maybe we’re the only three but, because I was in the back of a pickup truck traveling but, I didn’t get injured, of course, in that. I remember work because I remember what I was doing and I remember the people that I was talking to at my new job, because it was a, a pretty good position and, you know, I was looking forward to it all. It is likely that he has less total amnesia for events before the accident, retrograde amnesia, than he has trouble accessing his memory – as if the index or table of contents has been lost. It is likely that those memory are still there, just hard to access. I asked him
Jeremiah’s clearest memory was of what happened as he was leaving UW hospital. He explains: “Well I can remember things such as how I was being taught to walk, and very good person, but to me he was mean because he actually would, what I remember is, he would drag me up the stairs, and my feet would just be hitting the stairs as I learned to walk up a stairs and such, and yeah that, that’s, that’s probably the main thing. And I, and I can remember going out on a patio, where it was chilly out one time.” The memory Jeremiah that stands out clearly in his mind was the day he left the hospital and his wife found his hospital records just laying there on a table in the cafeteria. It is no wonder that this is the clearest thing Jeremiah remembers of his stay at the hospital. An argument where he was asked to personally take a position, repeated position, with the ultimate resolution involving the police. Not the recommended treatment for a vulnerable coma survivor, but clear evidence of the role that stress and emotions play in memory formation, towards the end of a period of amnesia.
Jeremiah states; “As I was told by the doctor â€“ and this is very true â€“ prior to a brain injury is like a person or myself who knew how to type. After a brain injury you are hunting and pecking. So everything you do, you had learned was natural, is no longer natural, and I even take it one step further. It’s like hunting and pecking on a keyboard that has the keys rearranged each time you come back to do it. Just like you can’t remember things. That’s why, because of my memory disability.”
Well there I started out just trying to remember many things, and even using the phone was difficult, because that’s what I had to do a lot of. I had to talk to other businesses and learn what they were doing on a particular product, and then determine did that meet a specific standard. It wasn’t a super-difficult process for me to do, but the memory part was difficult, and even remembering how you use their phone versus at home you pick it up and dial, which was hard to begin with too. But then you had to learn, remember to keep track of this on paper. The brain of mine would not remember so much. I had to learn, I shouldn’t say even learn, but I did have to learn â€“ but I had to enact these things that I was taught by rehab of memory methods. – mostly writing down and typing in the computer. So I had to (remember the) processes that I would remember how to look at them too. Write your messages each, by time, by date. But then you’d like well what day did I talk to this person last? I don’t remember. What was the name of the company? So a computer is very helpful because you can type in the name and it’ll, it’ll do all that scanning for you.”
In regards to special accommodations in the workplace; “What I had to have was a recorder for phone calls, so I could remember what I said. It was hard for me to tell you what I had to, because it’s hard for me to remember other than that.”
What were your biggest obstacles to success in your return to work?: “Memory and pain. Memory and pain and fatigue, and I’m sure there were other ones too.” What were the memory problems that you had at work?: “Well they, they were remembering how to do things from one day to the next.” Remembering what you did the day before?: “Right. That would, that might, might be difficult, especially, but with, with keeping good records, that would help, but then again, like I say, you have to remember how you order your records, because you can have whatever written down, but if you don’t know where to look on the sheet that you wrote. Same thing in your brain. It’s like a brain injury on a sheet of paper, because you can’t.”
In guitar you use your left hand to some degree more than your right, because you make the chords with your left hand (fine motor control of the fingers) versus strum with your right. This was fortunate for Jeremiah as his right hand is far more disabled than his left. Did you have to relearn the chords that you used with your left hand?: “I had to relearn, yeah, a lot of that, yeah, the chords.” Jeremiah is a unique story with respect to his music because he not only plays music but writes it. Another question for the brain localization scientists will be where is poetry written and how different is that function from the normal use of vocabulary and speech. Jeremiah used rhymes to help his memory of people’s names: “I figured out ways to try to think of their names, but it was typically with a set of a rhyme so put everybody’s name together or in my prayer at night, I’d have to think through it, if I’d see one of my people I didn’t remember their name. It was this use of rhymes to help his memory that started his flirtation with lyrics, which has lead to his songwriting.”
At what point does your memory begin again?: “That’s kind of hard to say because I could only pinpoint back to my mother’s journal and what she wrote. But, but yes, I do remember one thing. The nurses kept coming in to check my level of comastocity, uh, uh, that’s probably not a word, but the level of the coma that I was in because there’s like different levels, and they would poke me and prod me, can you feel this, can you feel this? Yes, I can feel, I mean, hearing is the last thing to go in a person, and, and yes I could hear that, and yes I could feel that but, it’s, it’s irritating when you’re able, when you’re able to hear and feel but you’re not able to respond because of a tracheotomy or oxygen in your throat and you can’t talk because it, it’s frustrating. But they kept poking me and poking me. My landlord, who I was living, I was living on her residence before I moved in with the coworker to help her with her children, she came up to see me too and she told the nurses as she was leaving, she says nurse, Kelly can understand you, she knows what you’re saying, she just will not respond to you because you’re, you’re irritating her, but if she, if she were fully awake she would raise her hand
At what point does your more continuous memory return?: “That one’s easy. Because I was a legal adult without caregiver support consator, conserva, conservatorship, things of that nature, my mother had come out to see me and to become my legal caregiver/guardian/conservator. She had to go to court and go through all kinds of hoops and loops and things to become my conservator, my guardian, and she did that. I remember having to go do that. She was staying at the Ronald McDonald House, which was right behind the hospital. She came to see me every day, and I remember her telling me that she had to go see the lawyer and she’d asked me where was a good place to eat and I remember telling her good places to eat in Austin, because, because everything’s good. I remember those things, and then she would come back and she says now somebody’s coming to visit you, and she’d tell me who was coming to visit me and I’d say have them bring me a calatche.
Do you remember the day that you got hurt or was it days or weeks before your injury that you can remember?: “I remember before it happened, like I had to work overtime that Saturday at Morgan Corporation where I used to work and then went home and took a shower and went to Cornfest in Darien and then play some Bingo and then, then we left there and I go, let’s go to the Chilifest just, just because of their band you know.” You remember up to an hour before you got hit? Do you remember your daughter and wife leaving?: “Yeah, yeah, that part I did.” Did you know what injuries you suffered? Did you have a skull fracture?: “That I’m not sure, but I was in a coma for 12 or 14 days and I, after that I remember nothing from transfer to Edgerton to Med Flight to UW Madison Hospital and, and I don’t remember none of UW at all. Or again the coma or nothing like that.”
Do you have problems with forgetfulness?: “Yes I do.” What kind of things do you forget?: “Like, like I’m going to say something and like I got something in my thought, or and then I’m going to say something and all of a sudden I’m going to forget, like my memory’s short, they call it short-term memory whatever. And that just frustrates, gets me frustrated. I mean, I mean a couple of times a day it happens you know and “”
So you, your ability to remember things as important to you as sporting events isn’t bad. What types of things do you forget?: “Like it’s hard to explain, like short-term, like I want to say something then I forget what I’m going to say. That kind of stuff.” Do you have more trouble remembering things that you say than things that you might watch in a football game?: “Yeah. Like I’m going to say something and all of a sudden like I’ll be talking to somebody and all of a sudden I can’t remember what I was going to say. And it happens often too and it drives me, I don’t like it you know. It frustrates me.”
Did that disrupt your day or was that a good thing?: “Probably both. See the good thing is I tried to explain what happened to me, or what I go through. But today, it’s one things I should have wrote this down, I had this appointment but I didn’t write it down. and that’s one things that I got a little notebook I should have wrote it down. That kind of frustrates me too. I didn’t know I had to do it, and I have had this appointment (book). If I’d wrote it down, it’d be different. You know what I’m saying? See while I was in rehab like at Mercy of Lakeview they told me to write things down. Like for appointments and all. Like today’s an appointment. And I didn’t write it down. Stuff like that, I don’t write down stuff like I should, to remind myself.” Is it getting harder for you now, we’ve been doing this for an hour and 45 minutes?: “See I was going to say something and then I, then I, then I can’t remember what I was going to say, that’s what irritates me the most.”
In trying to answer the question, I explained that the brain doesn’t know what to do with a blank slate of memory, especially about something as important as THE ACCIDENT. Thus, it searches the bits and pieces it has been told about what happened and mashes that together with other information and creates what the injured brain sees as a plausible and detailed memory, that has no basis in reality. Just as the universe abhors a vacuum, the injured brain abhors a blank memory and â€œdigitally enhancesâ€ almost random information to fill in the hole.
For the survivor of severe brain injury, it is not just walking that has to be relearned. There is a need to go slow, to heel to toe so much of life. Memory, conversation, shopping â€“ they all work better when done step by step â€“ heel toe, heel toe. Speech is more complicated, less universal, yet it is like walking, something learned as a child that is much more difficult to learn with an injured brain versus a developing brain.
As we have the benefit of Lori’s book, we can learn not only more details of what happened in the accident, but Lori’s process of integrating what was known about the accident with her limited memory of it. ” As my reading became stronger, over the next 10 years, I read and re-read that document. I tried to build the accident into my memory. I was desperate to add this ingredient to my memory. It still is nowhere in my mind. – ” The driver recounted that a truck in front of me had dropped a bale of hay. “She gained on the truck.” That must have been the moment that I had recognized my need to change lanes. Before I could a move, another bale fell on my car. This last bale dropped on my windshield. I spun off the road. Before the drop of the second bale of hay, my memory stopped.”
Traditionally it is thought that long term memory is usually intact after even severe brain injury, except in truly profound cases, far more severe than Lori’s. Conservative neuropsychologists often routinely dismiss pre-injury, long-term memory deficits. Yet, my experience is that most survivors of brain injury do have some unpredictable difficulty remembering pre- morbid (pre-injury) events.
What do you remember of your time in the hospital?: “I remember seconds of time prior to when I was able to be transported to the therapy department. So I remember seconds of time when I was, I needed to stay in my hospital room. And I only remember seconds of that, it like, almost like blinks of seeing a few people that I knew and loved. That’s the only memory I have of that.”
“What else therapy do I remember with the doctor? Like you said, I can remember the 90s and I can remember the, the late, you know, I remember, I got married in 1989 and the car accident was in 1986, so I pretty much remember my neuropsychology from 1989 to ’92, but prior to that probably just, uh, finish the questions kind of thing.”
“I don’t remember my parents feeding me. I think from the time I moved back to my parents’ house I was always able to at least shove food into my face. I remember, I don’t remember changing my clothes. I remember needing help to go to the bathroom and I remember embarrassment because there were times when I pooped in my bed. I remember a time after I didn’t have to have my straightjacket in my crib, and I pooped in my bed and I found, recognized that I did that and I climbed over the walls of my bed and I crawled to the bathroom and I washed myself up and then I found the linen closet and I got fresh sheets and my mom heard me and ran upstairs and had a fit because she thought I was getting hurt, so I remember that incident. But that’s actually a proud moment, you know, I think it made my mom happy, too.”
So you were still not really ambulating, not walking well, that first months. How long were you in the crib?: “I don’t know. So if I think of seasons, that was June when I got there, and it seems not long, because it seems like by the time fall had begun I wasn’t even in a wheelchair. And I don’t remember being in a wheelchair but I know I was.”
At some point did they bring down the walls of the crib?: “Yeah, and I don’t remember that and I don’t remember the time that I went from the crib to a regular bed, but I know it happened. And I don’t remember being in a wheelchair, but I know that that happened. I remember walking but not walking very well, but walking. And I remember pushing everybody away from me, don’t help me walk, let me fall, let me, I remember that.” Where was that?: “That was when I was staying at my parents. For outpatient rehab, there was a van, a hospital van that came and got many of us that had outpatient rehab, and the van would come get us at our homes and take us to the hospital and then bring us back. And I don’t remember being escorted from the house to the van or escorted from the van to the house but I know that it happened. I remember when I didn’t need escort from the house to the van and from the van to the house. And I remember, my first memory of not needing to be escorted from the van to the house. The van had driven onto the street of my parents’ home and I said: “Today I want to walk to the house on my own.” And there was a driver and then an assistant or whatever, and they said, “well okay, but we’re going to watch.”
That’s your first memory?: “That’s my first memory and then after that things fade in and out. I remember doing some of my rehab, walking, learning to talk again. I haven’t learned how to eat again. I still have problems with that. I had to learn to use the restroom again. We have up to – when you had that feeling, I guess, to go.” And it’s not until sometime later that you begin to actually have what they would call continuous memory?: “I guess at some point. I didn’t get my continuous memory maybe a few years ago. I still have problems.”
Talk to me about this whole concept of kinetic thinking. We’ve talked about that in a number of different interviews, learning to play the guitar for example. Or learning to play the piano or things where you have to remember and use your fingers at the same time. Is that sort of the same concept?: “That was the same concept. While you’ve got the pencil in your hand and you said the word and you filled it out, you were seeing the letters, you were hearing yourself say the letters and then you were seeing yourself writing the letters.” Why do you think that works?: “I believe Dr. Nash explained it â€“ when you’re using most of your senses to writing and understanding you have more of a remembrance of say the word or what you’re doing.” So in essence what the doctor is saying is that it’s sort of like you’re overlaying the same memory?: “Overlaying it to where I wouldn’t just remember it by just likeâ€¦ I can remember it with all my senses so the memory of that would be more permanent.”
You remember being interviewed last summer? : “I remember you being there, what we talked about. I know we talked about my dog, and that’s really all I can remember.”
While confused about it the first time we met, by the time of our interview, Mike had been able to piece together what had happened to him. He explains further: “I remember going down to the corner bar, going in there and having a couple of beers.” Now you do remember that in your own memory not from what other people have told you?: “Yeap.” There was a time you thought you got hurt from a chainsaw right?: “Right.” When did you realize that that isn’t how you got hurt?: “(Because the injuries) didn’t match to a chainsaw blade.”
What’s the closest to the time of the accident date that you remember, the day before, a week before?: “That’d be the day of the accident.” What do you remember about the date of the accident?: “I remember going down to the corner bar, going in there and having a couple of beers.” Do you remember the week before the accident? Was that the only thing you remember?: “That’s all I remember.” Do you remember going to work the day of the accident?: “I kind of remember it. Some days were pretty much the same. That’s the thing about routine, if it doesn’t stand out, you’re not necessarily going to know that’s a specific day.” Do you remember Christmas?: “Yes. I remember going home. My wife took me home for Christmas. Christmas, yeah, then I came back here right after Christmas.” What do you remember about Christmas?: “I remember going home, we had the kids over Christmas day, my grandsons, my son little boy that he raises.” Get any special Christmas presents?: “My son bought me a nice hat. It was a nice wool hat that I liked very much.”
So when she first wakes up she’s essentially blind. Could she see light from the beginning when she woke up?: “Right. Right. I don’t think that there was any issue with that. Something that was quite interesting though is being a reader, she was a reader, really good vocabulary, high vocabulary for a fourth grader, and, because she couldn’t see, she could hear everything. I always told everybody, this is a happy room, there’s no, nothing sad here, there’s no, information given that is negative. We have to go out in the hall and talk about it if there is because she could almost repeat verbatim sometimes the conversations we had. So she started learning auditorially as her major (source of information)Her memory seems to be excellent during this period?: “Yes. Like if, if we were talking in the room, she could repeat back chunks of the conversation almost verbatim ” I would say at least, you know, full sentences or a full sentence.” Did she have problems taking that immediate memory and moving it into long-term memory? Would she remember having been there the day before? Did she have continuity in her memory?: “No.” Explain: “I would ask her, do you remember having the applesauce yesterday, and
So what are the last ten days like in Madison?: “The last ten days are better as far as her talking and conversing a little bit. But she still never engaged in anything. They have a craft center there where the kids go and you can do a lot of different crafts. They have a lot of high school and college volunteers come in and she was being tutored by a teacher as well. The teacher said she knew what the words were on the book but she could not go back and remember what the words were. Like the vocabulary words that she needed to know for say history or something, she’d know them if she read them right away and she could repeat them. But there was no, it didn’t seem like there was a recall later on in the lesson when she had to write them down, or try to write. For brain to hand it was, it’s still very difficult for her, from brain to hand to write.”
Does she remember who she was? I mean, now it’s been nine years, but for , going back to May and June of, of her fourth- grade year, does she remember at that time how different her life was? What her life was like? What does she remember?: “I don’t think that that was even on her mind. I don’t think she could put that into terms. Embracing ” we went to ” there are a couple of fourth-grade activities that we’re going on. One related to a sleepover at the school and it’s in the middle of winter when there’s not much going on anywhere else, and so the kids stay over. They make T-shirts. They put on a play. They do all sorts of things. Well, she’s invited there for the dinner and, , they also have, like I said, making T-shirts and things but the – when she walked in the room the noise level was so high for her that that was disturbing; put her on edge, so that was a stressor. And they all ran up to her and hugged her and the emotion in her face wasn’t “oh I’m so happy to be here”, “oh this is too cool”. It was absolute terror.”
So are his memory problems related to the morphine or are they related to a head injury?: “I think they’re related to the head injury because when he came off the morphine even it was like that. It was a good two weeks before I could carry on a normal conversation with him where we could just talk and have a dialog where he remembered things.”
If we were going to prioritize memories, the most important thing would be that your daughter has been in an accident and she has had brain surgery and is in Madison, that is a 10 on a 10 point scale. He remembered that almost from the beginning?: “Right.” But when you get less significant memories he had more and more difficulty?: “Correct. Conversation was nonexistent and there wasn’t any because it just was too much repetition.” Throughout this whole time though he did remember his daughter was in Madison with a brain injury?: “Yes.” Elaborate on what he did and didn’t remember: ” When he came to see Nancy, he had talked to me about the accident and what had happened and it was very little. He remembers pulling off to the side of the road. Other than that I don’t think he remembers anything after that. I don’t know how much retention he actually had but he had talked to the in our truck who had told him and filled in the blanks. Then they were trying to do as best they could trying to get the story straight, in his own mind I think and it was Chris our passenger that actually filled in the blanks.” How long did it take him to be able to even keep the reconstructed story straight?: “I would say a
Do you feel like you have any residuals from the head injury that you had in this accident?: “Oh absolutely.” “Tell me about those: “Well for one thing that I can’t remember hardly any of my childhood. The things that I’ve done that, uh, my parents tell me that I did when I was young, I can’t remember. I can’t remember my graduation. I barely remember my wedding. It’s just so many things.” This extent of loss of long term memory is rarely reported after a Mild Traumatic Brain Injury. It may indicate there was more focal damage in Otto’s brain than identified, or it may just indicate that significant amnesia for events before the injury is more significant in MTBI than research has shown. It could be that â€œno long term retrograde amnesiaâ€ after a MTBI is such a given, that few researchers have ever explored it and that it is more common than current research claims. One explanation for this large gap in long term memory would perhaps be some injury to the brain’s â€œfinderâ€ (a Mac term, I use for the brain’s index/table of contents). Did you find anything start to come back on terms of those memories when you were there?: “Well unfortunately the school that I went to, they had torn it down and built a new
“When I came home from the hospital, I have no recollection of how to work any of the equipment whatsoever. I’ve had to take classes several times, repeatedly to learn how to operate my home system and learn the industry all over again. Which is kind of frustrating because that short-term memory, that learning how to do that all over again. It still takes several times and several tries even when, after I’ve learned a system. So, it, it’s weird how the memory doesn’t, doesn’t work.” Did you get out of commercial real estate because of the problems with the real estate market?: “Yeah. I never got out. I’m still in it or I’m still licensed. I still have the ability and the memory of how to do transactions and stuff like that is much better than the closed circuit TV stuff.”
What do you remember of being at Bethesda?: “I remember, I remember being taken there and I remember I had to take a piss, unbelievable and they had me tied up to the gurney and I kept asking them before I got onto the ambulance could you untie me. I got to piss and they kept just looking at me because it was coming out gargled, but I could hear, like I was thinking it. I got to go to the bathroom. Please undo me. But it was coming out wrong and all the way to the hospital and now I’m on the gurney in the hospital waiting to go for a CT or MRI or something and they gave me a urinal or something that, a bottle and just put it, positioned it. Maybe he’s got to pee and I guess I threw it at my wife and mother-in-law a bunch of times. I only remember throwing it at her once because she said she’s got to pee and left the room and I started screaming and yelling and ra, ra, ra, ra.” I guess. I, you know, I mean, when they finally figured out maybe he’s got to pee, on the way back from the MRI or whatever, they let me go to the bathroom. They had to carry me into the bathroom and they held me up and let me pee. I slept like a baby the rest of the night and it was amazing. I mean, I don’t remember that part but as far as memory
Do you have that type of cognitive capacity, that kind of cognitive achievement in other areas?: “I don’t know. I mean, I want to say love for my wife, love for my family is, to me has been enhanced. I thank her every day for what she’s done for me, for being a rock, for, you know, me putting her through hell, for not, just one stupid strap on my helmet wasn’t on right and I put her through a year and a half of hell. She has been there for me through sickness and in health, and I never thought that line would ever mean anything, and it is, she’s been unbelievable.”
Steven has no memory of the accident itself. How close in time to the accident do you remember things?: “Around that time period, but most all my pre-wreck memories are a little bit – I don’t know what the word is – maybe convoluted would be a good word or kind of like a dream that you had, say three or four months ago, that you have a vague overall image of, but I don’t have any specifics.”
So clearly, you have fairly accurate memories of the types of things that you did at work before you got hurt?: “Especially when it’s stuff like right real close to the accident because that was at the time probably the longest I’ve held a job consistently.” Do you remember about your last time being at work?: “Not at all. I knew it was the day before the accident.” Do you remember your supervisor from work or your, your former boss?: “I kind of remember him, but I couldn’t say the name right now.” Do you remember your childhood?: “Yes, sir. What I do remember of that, I prefer not to. I wish I could’ve lost all of it.”
So what is the first thing you remember after your accident?: “Blanking out in a really bright room, real chemically smells. You know, I haven’t a clue as to what’s going and finding all these different wires and hoses coming out of me and being strapped to the bed.” So you have a few very vague memories of the first five weeks of your stay?: ” Yes, sir, because I do remember I was a smoker at the time, and I remember, being wheeled up there above like where the main entrance is to go smoke a cigarette.”
Steven – Any Pilot in the TBI Storm to Smooth Transition to the Real World After Severe Brain Injury
So that would mean that you’ve at least lost a week and a half completely in terms of your memory?: “That’s pretty much it, sir.” At the time that she’d told you that she’d been your girlfriend, you had lost enough of the memory before the accident you weren’t sure that she wasn’t?: “Right. I mean, I wasn’t going to argue because I didn’t have many people come up there and see me as it was anyway.”
Do you have a problem where you get something taken apart and can’t put it back together?Yes, sir. I just don’t remember if I have like these â€“ if I have any more – exactly what these are and where they go. I might not remember if they go there I can get in there and then find out out I have got this put up but I still got this stuff here that should have went somewhere.
Now, do you remember what happened just before your crash, do you remember being in the chase?: “I remember everything, up until before I hit. I remember pain and then, I remember everything up until before I hit.” When his stepmother was asked,Tell me the difference of what he told us versus what actually happened: “Well, he only remembers what he hears me speak about. So, what he says happened, yes it’s true, but it’s not his recollection of what had happened, and he didn’t really come to an awareness state until probably about October and he was released July.”
Was he at Spaulding before he began to realize who you were?: “Ah, no; when he, actually he did not have, he knew who his family was right away. It wasn’t like he didn’t know who they were. People that he had met prior to the accident, like the girl he was in the accident with, he had no idea who she was. Her mother, they came to visit once. He had no idea, but if my husband’s family, my family, his mother’s family, he knew who everybody was.”
Do you remember coming home?: “A little bit. I thought I was in Bridgeport, Connecticut in jail, to be honest.” Were you in Connecticut, when you got hurt?: “No. I turned around and thought I was in jail; they caught me. They told me I was in jail.” You remembered the chase and thought that you were in jail?: “I remember the chase, yeah. That’s why I thought I was in jail. I thought they caught me and they took me to jail.” So your first memory is something that’s actually, fairly emotional, fairly traumatic, thinking that you were in jail?: “Yes”
Many of the people I have interviewed have had remarkable recalls of sporting events. But he doesn’t seem to really remember sporting events.: “No.” Is that typical that he really doesn’t absorb very much into his short term memory?: “Right.”
What problems do you have with your memory?: “It’s fair for the most part. If I see somebody I feel like we are like maybe a day goes by or something and so it’s really not as bad as it was. It used to be bad but it ain’t bad no more.”