Madeleine L. Transcript

So this is Madeline. For reference, I am 27 years old and currently based in Germany, working with the German Red Cross and in a school and living a much more exciting life than I was when I originally had experienced some brain injury, so there is hope. I experienced my first major injury when I was 16 years old. I was a part of a high school organization that would take trips out to Crow Creek Reservation in South Dakota, and our high school guidance counselor had a relationship with folks out there on the reservation. Basically, so that we would provide cultural exchange day camp programming. So we will learn about the Lakota culture, while people there would be able to drop their kids off and you’d be able to watch them, you know, give a little childcare in exchange. And when I was out there one winter, we would go out into these hills behind where everyone lived– in these massive green rolling hills. We took a golf cart out into the hills with a couple of folks, there were five of us in total, and found a bunch of horses, so we’re about 20 minutes drive away from where we were based. And it is a sunset and so I took my camera out and was taking photos of the horses, and suddenly somebody said, “Hey, Madeline, why don’t you jump on one of the horses. I dare you to jump on one of the horses.” And I had just had a conversation with somebody earlier that day, who I really admired, had a crush on, and he said “when do you ever do anything irresponsible?” And so I took those things together, with the fact that I had it on my bucket list to ride a horse bareback, and I grabbed the mane of one of the horses and I jumped on. And I remember counting to six while the horse was bucking and don’t remember when I actually flew off and hit the ground. But I did. And I only remember opening my eyes four times after that. And each time I was in different locations. So the first time I was talking to folks, not really sure what happened to where I was the second time I was already in the golf cart. And third time I was in an entirely different location, but still on the golf cart going back. And the fourth time, I was talking to an EMT who was on the trip and she was asking me these questions like, you know, “What’s your name? Where are we?” And I knew those questions and then she asked “What day is it?” And I go “shoot, you know, I don’t know exactly. I know it’s December. Maybe it’s a 2020 is 21st 22nd, but I don’t know for sure. It’s winter break.” And she was kind of nodding along and at the end said, “Yeah, well that was better than the first time that I asked you. “

So, I still don’t remember the first time that she asked, and I don’t remember much of that day in total.I The only memories I do have are of a grape Propel bottle. For whatever reason, somebody had given me that to drink and then every time I placed it down somewhere for the rest of the day, I had that snapshot of where the Propel bottle was, but not how any of those other images or series throughout the day connect. And I chose not to go to the hospital. I was actually pretty adamant about that because I didn’t want to burden the care system because it was a very rural area. And I didn’t feel like I was having an emergency– part of that probably was just being stubborn and not wanting to look like an idiot for having jumped on a horse in the first place (laughter) — but I wound up not going and basically going home after that. And it was about a 12 hour drive home that we all took together. This is towards the end of our trip.

And the thing I remember the most in terms of effects was just head pain. I had a really big headache for the next couple, next couple of days. But because it was winter break, I had a lot of time to rest, and I don’t remember there being any sort of significant after effects of that, but it was probably something that influenced the later head injury that I had, which happened quite a bit of time later. I was 22, a couple weeks before turning 23, and at that point in time, I was living in San Diego. I just finished a year of AmeriCorps service so I’m out of university at that time.I was literally had that day finished, finished the year and the following week was going to be starting a new job with the same organization working in refugee resettlement. So the background is that I had to be using a lot of different languages for the work and then also, you know, working with a lot of different people in the kind of ever changing environment. And I also was– and am a dancer, and I went to Zook dances, Zook is a Brazilian partner dance characterized by a kind of fluid circular movement.

I always usually danced with partners and I had taught it at that time, and it was dancing with somebody else that night who also taught the dance in reality dance step three songs together. And then the fourth song he was kind of looking around him trying not to run into anybody, but wasn’t paying attention to where my body was and I was down in a dip and I was kind of thrown pretty seriously into the dip. So I lost my balance and when he pulled me up, I couldn’t control my own body and he wasn’t paying attention and basically moved my head, like swung my head into his collarbone. And at that I did not lose consciousness. I did however immediately feel nauseous, like ran to the bathroom, was throwing up water, and just felt absolutely horrible. I went and laid in a back room for a couple hours. Just with my hands over my ears. Everything was super loud. I felt like I could feel feel the music in my body even though I wasn’t anywhere near the dance floor, went outside and had people ask me the same kind of questions that the person the EMT had asked me back in South Dakota and didn’t find that there was anything that was dramatically wrong. And so I thought like “Okay, should I go to the hospital?” but decided not to because again, I hadn’t– in my opinion it hadn’t been the “worst.” I’m using air quotes here.

Injured the last time that I had one because I lost consciousness for so long and really had such terrible memory. But then, those next few days, I was feeling really, really depressed, really out of it. And when I went into my new job, and I was talking to a co-worker, and she was talking about what we’re gonna do the next week, and she said, “Yeah, we’ll talk about it in our meeting on Tuesday.” And I remember sitting there for a second as she walked out of the room and like “Huh. I don’t know what Tuesday means.” Like, I could tell you nothing about it. Just I could maybe find that on the calendar, but I couldn’t tell you that it was a day of the week. I couldn’t tell you that it was, you know, that anyone had certain opinions of Tuesdays in comparison to Mondays– no other information for me about Tuesday existed. And what I would find out is that was because it happened on a timeline. So I actually completely lost my sense of time.

And the sort of words that surrounded that. For example, “a quarter to 10” or “half past” like all of that ceased to have meaning in my understanding of the world around me and though I could show up to work on time, and kind of move through my day, I had no ability to conceptualize where I was in time or what I could do in the future. So I could not plan at all. I could not like think about the past because to me everything that had ever happened was happening at that same moment, including anything that ever could happen. So everything just was in in that one minute, second of experience. And once I was realizing that that I mean, that was challenging in itself, but it was not until I was at work and my co-worker and other co-worker was talking to me. And I realized I couldn’t hear what she was saying because there was a fan going on in the background. And I couldn’t distinguish between her voice and the fan that I realized that something else was pretty seriously wrong. And so I didn’t go to the hospital at that point, which was about 10 days after I had actually hit my head. And they told me that I should get my ears cleaned and they kind of laughed at me. They’re like, “Yeah, well, you hit your head dancing, like, that couldn’t mean anything.” And so I tried to advocate for myself, but I couldn’t find the words. I started having problems just like pulling words to the front of my mind to be like, you know, I’m really sure that something is wrong. Like I think I have a concussion again. “Yeah, go see a different doctor, you’re fine.”

I did see a different doctor who kind of also said, “Yeah, well come back in a couple of weeks if it’s not better.” I was trying to say “No, well, it’s already been a little bit of time and it’s getting worse,” and unfortunately wasn’t able to be taken seriously until about a month after that, at which point in time I had such consistent terrible headache that I couldn’t make it through the day without being in tears. It felt like there was a stake going from my left eye through the back of my head. And was just like on the one side was pounding piercing pain, and I couldn’t really talk when I had experienced that pain. It wouldn’t necessarily go away when I was sleeping either.
And so I would just kind of stay home from work on certain days, and wound up eventually getting a prescription for a low dose of Amitriptyline which is a kind of antidepressant actually but used for very serious head pains from head injuries occasionally. And it helped a little bit to hit the pain. But at least at that point I had also been in conversation with people at work and everyone and was able to take a medical leave– take a more serious at first two months off. And so I went back to the Chicago area, which is where my family is from and was able to stay with my parents which I was very lucky to have because I was able to have an advocate in that time. Because I really– like that time– I remember calling “tables” “potatoes.” I tried to say “magic trick” and it came out “maggot trick.” Like there was no vocabulary.

I couldn’t count on my own vocabulary and my own ability to communicate anything, much less the seriousness of what I was experiencing. And the one neurologist gave me more of the medicine, which actually made me start to feel worse because it kind of, while it numbed the pain, it numbed rest of me as well. And I mean, the tricky part– what a lot of people don’t talk about with head injury– Is this, I mean, the traumatic nature of it and because I have this sense of all things on the timeline also being erased, like there was no timeline,
I was experiencing pretty significant PTSD as well. Both from the injury, but then also from other things that had happened in my past and to feel that sense of apathy was really, like from the medicine, was scary in a whole other way. And so, I started to after a couple months realize that I wanted to get away from that, especially after I experienced– I had like four people die within that time. So trying to navigate death while having no sense of time was something that I still don’t necessarily have the words to describe.

But in a weird way, because I almost had to have this sense of unconditional presence because I didn’t have a concept of the past or the future. And so it allowed me to processes things in a way that I would never have done so otherwise. So I think about that a lot still. That’s probably the thing that I think about the most from the whole experience.

But after a couple months, I went to another what was called a neuropsychologist who ran a series of tests. It took about four hours and was exhausting. And after that she told me that I was basically making my pain up and making everything up, and based on my results from the test, which I think is an important thing to realize because there’s different kinds of tests and different abilities out there. So I, for example, had absolutely no problem remembering visual things. I could recognize shapes, I could recognize images and I could pair those things and also would keep things in short and long term memory, but for me it was when it came to producing speech or when it came to remember anything that had to do with numbers. Like I had, again, I guess maybe because numbers are similar to time I’m not sure. I couldn’t remember those quite as well or recite those. And so even though I scored like in the 13th percentile on the one auditory test because I scored the upper percentiles for the other one, she basically said that “Mm, nope, you’re you’re fine.”

And that was given to the other neurologists that I went to who then it’s like, “you’re fine,” even though I was still experiencing this whole other sense of un-being. And I went to another neurologist after that, who, thankfully he was able to get a second opinion and say “Actually, you need to do what’s called vestibular therapy,” which works on the neck because the neck muscles can strengthen or weaken in response to serious head injuries. And I would also then in vestibular therapy, go on to do exercises like eye push ups, which is where you take a popsicle you write like a letter on a popsicle stick, maybe the letter A and then you kind of move it close, move it far away. You’re focusing on that letter, but using different colored popsicle sticks or different backgrounds, maybe first it’s a very plain background and then it’s a more colorful background and then you have a moving background like a street that you’re watching and that’s helping your eyes focus. And that helped me a lot with my sense of nausea and a little bit with the head pain as well once I started to be able to focus on things more. And then that neurologist also had suggested taking different supplements like magnesium and riboflavin which were very helpful for me but you know, again, every head injury is different, so after those things though and after after reducing the medication that I was on for the head pain and switching back to the kind of like NSA IDs I was able to slowly start to move back in the direction of recovery and return to work after about three months at a very part time basis. And then after another three months or so I was back to full time. And it took about nine months before I could listen to things again, like music.

I remember the first day that I listened to like somebody play an instrument for the first time it was like a really
then it took probably another year or two for me to feel like I was at 90 or 95%. But at this point in time, I’m able to do better, or I am much better. I still occasionally will have issues with a lot of overstimulation, whether that’s from like a light or an auditory standpoint if there’s a lot of noises happening at once and I’m not rested and that’s exhausting for my brain.

And eventually, I mean, kind of what that whole time taught me is like you have to become your own advocate and so, you know your body and you can make those choices accordingly. And I’ve also tried to maintain a little bit of that sense of, like, unconditional presence as much as possible, but easier said than done and honestly, it’s nice sometimes to be able to put things in the past.

And to have some sort of sense of being able to look forward to a future. I know sometimes the future can be a scary thing, especially when recovering from injury because you don’t know what it’s going to hold. But even imagining, like the process of imagining things, that could happen in a positive light is a thing that I have appreciated being able to get back.