Interview with Mackenzie Meyer -Being a Speech Pathologist Graduate Student with TBI During Covid-19
Tina: To start, can you please introduce yourself? Share anything you want: name, age, and anything important for your audience to know.
I am Mackenzie Meyer. I'm 25 and I live in Iowa. I am a speech-language pathologist. I got a brain injury in the fall of 2019, right before COVID.
I had suffered several concussions, probably five or six, in my life prior just through sports.
Tina: What sport do you do?
I did volleyball and dance. Then I was in a tubing accident when I was younger. None of those concussions were really taken too seriously. For volleyball, I couldn't play for some time because of the protocols that they had in place. But the other ones like through dance, and my tubing accident, were just brushed off. I was to blame for that, too. It wasn't really a priority for me or other people, and I lacked the knowledge of how serious concussions can be.
Then I was a senior in college and I was working in a sports bar in my college town. When I was in the back doing dishes, I slipped and fell and hit my head in the kitchen. I knew immediately that it was not good. I was by myself, so I don’t even know if I was unconscious. Eventually, I went home, texted my roommates, and texted my parents.
The next day, I drove myself to the campus clinic to get it checked out. When they asked for my address and student ID number, I didn't know it. That's when I was like, “Oh no, this is not good.” They did all the screenings. They asked, “Did you drive yourself here? You shouldn't be driving!”
My boss wasn't too pleased that I couldn't go to work that day, so he made me come in the next day. I was making all these mistakes and they were like, “Why is she here? She needs help.” I went back home.
I was in the middle of applying for graduate schools for speech pathology, taking the GRE, and presenting research all at the same time. All my professors advised me to take some time off but I said “I don't have time to take time off. This is the moment of my college career that means the most right now.” I remember one teacher made me get an accommodation plan and I was really mad. But in hindsight, it was exactly what I needed.
Then COVID happened. During winter break, I took my GRE, did all of my research, and finished presenting one. I was still having migraines, which I was never a person that had headaches, nor was I a nap taker. But because everything was online, I thought that I was having these headaches from screen time. That I’m just really tired from being in lockdown.
That summer, I went into my first year of graduate school. I was still taking naps, like once or twice a day, but the world is just not normal right now. My first semester of grad school was very intense and I was a graduate assistant at the time too, which is another layer on top of everything. I was having these debilitating migraines. I was hiding them from my friends and my professors at the time because I didn’t want to let them know that I'm struggling as much as I am. They knew that I had migraines so they extended me and offered an accommodation plan. But I refused.
Midway through my first semester, I thought I needed that back because something was wrong. I was also able to see a neurologist out in my college town, but they weren't too helpful. They stated, “Oh, you're stressed out? Or do you need to drink more water?” I knew all of those are partly true, but I was also studying brain injuries myself in school. I knew that you don't necessarily have to have anything show up on a scan for you to have a brain injury — a mild to moderate brain injury won't show on a scan. It's really deceiving that my scans came back clear. I am thankful, but that does not mean that there's an issue happening. So, I went to a place in Omaha, hoping that they would listen to me. They did not and told me the same things as the previous neurologist. I was taking all of the meds they told me to take and doing self-injections.
Every day, by 11 o'clock or noon, I would be in the worst pain of my life. I would work my GA job from eight to noon. I would go home, and zoom in to my classes with my camera off because I'm nauseous and throwing up, simultaneously trying to retain that information. Then I would take a nap because my brain would shut off and go to a clinic where I would have clients from three to five. After that, I come back to my apartment, sleep more, do my homework, and eat a meal. It was just the most insane life that I was trying to pull.
Tina: Wow, I don’t understand how you pulled it all together. This sounds crazy to me!
Yeah, it is, it is. Eventually, when I started having classes in person, I would leave and go to the bathroom. At this point, my close friends in my program knew. The professors kind of had an idea of what was going on. However, they really didn't know the seriousness of what I was trying to do to make it so I was still successful in school.
I would go to the grocery store on the weekends and literally get lost in there. I'd have a list but I would be going all over the store. It was a two-hour event that would drain me.
So finally, I failed an exam.
Tina: I’m honestly just shocked that it took you that long to fail one. It’s so impressive how you pulled everything together for so long!
Yeah, it’s crazy. The school said, “we need to talk to you. And I thought to myself, “Oh, no, I'm getting kicked out or something.”
They brought me into the office and asked me how I was, I just lost it. I was sobbing. They state that they know something is wrong. And I was told that I know too, but no one was listening to me. They thought I needed to get into Madonna. I said that was terrifying. Because that's a place where I want to work, not be a patient like that. I don't want to go there. I don't want to know myself as a patient.
But eventually, I put in a referral myself to Madonna rehabilitation in Omaha in Lincoln, Nebraska with the help of my family doctor who signed off on the forms. I went there in April of 2021.
Has it really been that long?! I had a seven-hour evaluation. Seven hours! It was actually very interesting. The staff was amazing. I did every physical therapy assessment you can think of. But, it was interesting because it came to the speech assessment. They could only give me assessments that I didn't know. However, I knew a lot of them because I had been giving mock assessments.
A staff member pulled out this assessment and asked if I’ve done this before. I state yes, I know how to pass the test. There were some screeners that I knew, and I still couldn't pass them. I knew the strategies that would give a patient to pass them, but I couldn't pass them. Clearly something was wrong.
When I got my diagnosis, I was alone. It was relieving to get that if someone had finally listened to me. But it was also very scary at the same time, because, being a speech student, I treat patients with brain injury. I thought my life's over. I can't be a speech therapist and have a brain injury. What am I going to do?
Once I got my diagnosis, my professors and I sat down and reworked my graduate plan. In hindsight, I only graduated a semester late! I was so upset at first. The summer of 21, I moved home. My classmates did coursework in the UF clinic in the summer. I did one online course and I lived at home and I didn't do any clinic. I was also at Madonna twice a week, all summer. That was hard because with graduate school cohorts, most of the time they're very small. I had 18 in my grade class, and they all graduated last May. I was the only one to graduate last August. It was sad that I didn’t get to experience that with them. But to be successful, that's what I had to do.
At Madonna, I tried a bunch of different things. I started Botox, met with a neuro optometrist, and had occupational therapy; since when I fell, I hit the back of my head first, which messed up my vision very badly. I did have physical therapy, which I didn't think I needed. And I'm still in physical therapy.
Now I am a speech-language pathologist in the schools. I work with children and I hope someday after I'm not so wigged out being a first-year SLP, I can be on our brain injury team. All the speech therapists and physical therapists and anyone other than a teacher really, you're employed through what's called an AEA. It's Northwest AEA, and they employ everyone essentially, besides teachers in the schools. We have different teams like an autism team, a brain injury team, and a Down Syndrome team. I'm hoping I can be part of the brain injury team and build it up a little bit. There's not much that they do right now from what I'm aware of. Besides that, that’s my story.
Tina: Thank you, I don't even know where to begin! The whole time, I'm just trying to wrap my head around how on top of everything you literally completed high school, college, and graduate school, and now you are so successful.
Yeah, one of my professors told me to journal my experience. I'm glad I did because it was a unique experience. All of my therapists were so supportive of me, and my speech therapist and I are still in touch. She was wonderful.
I was just very frustrated and I remember just being very irritable. Because I know enough about brain injuries where it's scary. Like I know what's happening to my brain, and I can't fix it, and you can't ever fix it. But, it's also given me a voice for myself and others, to advocate for what we need. I had to plan out my pills for the day when I was on all these meds before Madonna. I remember my mom sitting down with my pill calendar, reading each bottle and trying to put it in, and I got so mad that I just threw them off the table. My mom looked at me like I'm not the type of person to do something like that. She asked why I did that.I said I was frustrated and I couldn’t even look at it. It felt like no one’s listening to me. And unfortunately, you have to advocate for yourself. It's just exhausting, like having a brain injury for one. Then doctors do not believe you and then find the time and the energy to fight for help.
I knew it existed, but I never lived through it. But now I'm like, no wonder people don't get help for this. That was exhausting. I was lucky enough to have my doctor sign off on it. I don't know what I would have done if I had a doctor that thought it wasn’t prevalent. It’s just crazy to think what my life would be like if I didn't go and get that kind of help.
When I returned to school after that summer, of course, all my classmates said I look so much better. I gave them a mini presentation of what I did, what it looked like, and some insights into what the speech therapy aspect was.
Madonna had set me up with a load of accommodations and then they just sent it to my school. All, which was very nice. I remember sitting in my brain class about brain injuries, a whole semester dedicated to brain injuries. This was before my diagnosis. I would turn my camera off when I would start to laugh because I'm like, that's me. We would give each other assessments and unsurprisingly, I did not get a good score.
When I first went to my speech therapist, I was embarrassed. And she said I wasn't the first speech therapy student she had and that she had seen it before. One of my friends works in Omaha, as a speech therapist now and her mentor has a brain injury, and she separated hers when she was in her 30s. I don't know her personally. But I want to meet her and ask her about her story and experience because everyone is so different.
I've started a blog called Making Mackenzie, where I give updates and insight and share information to friends and family on Facebook, or Instagram, within the checkout, and I've gotten some good feedback from that. It's been very therapeutic for me to do that. Because another aspect of a brain injury is the grieving part of life, I will never be able to do some things again. I've always wanted to go skiing but I can’t go again because I can’t afford to hit my head again. There are just certain things where it's like, my speech therapist would call it risky behavior, where you're gonna put yourself in danger of getting hurt. There are just certain things where I think it is a bummer. I am going to a Taylor Swift concert in July and I am already preparing what I need to do in order to not get or reduce a migraine. So life is different after that, and I think that was the biggest emotional piece to get over — what you thought you had in your future is different.
For example, thinking about having children someday, and I'm terrified to go outside because I'm afraid of falling. As I said, I'm clumsy and it’s icy here in the midwest. I fell twice and my therapists suggest I stay inside. It was just those little things that I definitely took for granted before. I just want to raise more awareness to people with brain injuries. We have to grieve a part of ourselves, or our caregivers have to grieve a part of the person that they're caring for, that no one really tells you about. I think that's been part of the main reasons for my blog, too, is to kind of raise that awareness. Yes I have migraines, and yes, I have difficulties and different things I have to do to be successful in my job that someone else might not have to do, I have to take a little more time and I have to organize it in a certain way. Or else it's not going to make sense to my brain.
Tina: Thank you so much for your amazing story! You touched on a lot of important and amazing topics in the community, like the invisible disability aspect of TBIs, you talked about coming to accept facts and the grieving part, which is something I’ve never heard of often before in my past interviews. And I really appreciate you highlighting this part that often gets ignored.
One last quick question to really wrap it up, I’m really interested in what you're doing now, as a speech pathologist with brain injury.
I try to live a normal life. But as I said, I have migraines and those still occur. They’re not nearly as bad as they once were. On days where I get really upset or depressed about wanting to go to dinner with friends, sit on the couch, or read a book. And I can't because my brain hurts, I get really frustrated. But I try to remind myself that there's always going to be a day where I'm not feeling 100% and the next day, I could feel 100%.
I still receive Botox injections for pain. I get them all over, there's like 32 that I get. I get them in my jaw, my neck, shoulders, and head all over and they help a lot. So I have decided to go back to physical therapy, just because my shoulders, neck and everything just get on top of everything else.
I was in a minor car accident during my sophomore year of college. I got whiplash from it and I probably got a concussion from it too. I had physical therapy from that. My fall, but I had my initial brain injury fall, I probably had whiplash and got it treated. It was just a mess. Madonna helped a lot. I went back to grad school, I was doing my exercises as they told me to do. I moved back home for my internships and I stopped doing my exercises because I thought I was alright. So it regressed. I do physical therapy once or twice a week now.
I started using a Cefaly device, which is like an electrode that you put on your head and it stimulates your trigeminal nerve. I do it every morning before I go to work for 20 minutes. There's like a preventative mode on it that you do every day. Then there's also an acute mode. When you're having a migraine, you can do it for an hour. I love it. It's so nice. It feels so good. So, I do that. Yeah, it's just kind of hit or miss.
I try my best to still be productive during my day at work, like not only seeing my students and making sure they're receiving good therapy but also like if I do have a break. I always sit before I do anything. I kind of do a self-check like, such as, What is my pain level on my head? What can I do? Do I take medicine? I do have emergency meds that I can take. Do I take medicine? Do I put oil on? Or do I just take a break and shut my lights off and just sit here for 10 minutes? Sometimes that's all I need to do and then I feel a little better. But I think I do feel better now that people at work know about it. It’s not like I want them to know, but sometimes my friends and family can tell if I have a migraine and I'm hiding it because they say that my eyes change. They just look different. Now I think they're starting to pick up on that too. If they catch me in the hallway, and I am not responding the same way. I'm not being rude. I just need to get out of the conversation as fast as possible.
Tina: And that's kind of good, you know, to have that understanding.
Yeah, it's almost like a weight is lifted when people know because I don't like I said it felt I was hiding something because it's such a big part of who I am now. That's if they don't know about it like they don't know me. It's such an awkward thing to bring up. But, I like when people ask about it. Like, if I casually just say something about it. I like when they ask. I don't want anyone to feel scared or question, I want them to be curious. I want them to learn something. And it's also eye-opening because everyone knows someone that went through a similar experience as me. I want people to realize that it's very, it's very common, unfortunately. I want to go into middle schools and high schools and tell them how serious it is. Because I was the high schooler who brushed it off.
Did I plan on falling and hitting my head in college? No. But it will happen. And it's like, what I would have been fine prior. If that didn't happen, wouldn't that fall haven't happened? Maybe Yeah. But I would have fallen again, or gotten hit in the head again, sometime in my life, that would have just been the tipping point of everything. Even when I was in high school, and I had a concussion from volleyball, it's just kind of like a bum or you can't play but you can do all these other things to help the team out. Such as doing padding and taking stats at the game. The coach didn't know, because I was way at the end because I wasn't playing. And so they like to pass the clipboard down as it lands on me. I was taking stats.
Concussions are brain injuries that heal. In my blog, I explained it as brain injuries that heal. But if you have multiple concussions, it's kind of like having multiple bruises kind of all over your head that don't heal. Because your brain is just so crazy. It's so like jello, fragile, and it does everything in your body, which is bizarre to think about. Now my brain just has a new way of doing things. I just kind of had to retrain my brain to do it differently. Which is possible for people you know, like that's the whole point of going to rehab for stuff like that. Concussions are very common and they're not taken as seriously as someone sprained their ankle. Your coach will let you do things because you sprained your ankle. With a concussion, they think you look fine. That's the hard part of life, any chronic illness, any invisible disability. It’s also the fatigue that comes with that, when everything's like that, you kind of build up a pain tolerance to that. On an average day, my pain skills are around three or four. When I tell people that they're surprised. I would love every single day to be four. I would love that, you know?
It's been fun creating that blog. For me, it's been therapeutic and I talked to people about it when I was in graduate school. It was in my internships, there's a brain injury network in Nebraska, a pilot for a support group. For individuals with brain injuries, they pair you up with someone, and you go through these brain injury modules, at your own pace with this person. You meet with them on zoom in, you get to share stories and reflect. I made a friend, she's older, she sustained a brain injury when she was 16. She never really received any help for it. Her parents let her live with it with minimal help, that's the end of it. She never went through the grieving part of that. When I was talking about that, she said that she had a lot of work to do, trying to get over that part of what she was going through. It was just very interesting to compare stories and symptoms, and also feel the same way. You wake up, and you feel awful, and you don't go to work, but you look fine. I feel guilty if I don't go to work one day, or I leave early because I look fine. I still have to go home, make dinner, and do all the things.
I don't have a stuffy nose, I don't have a cough. I don't look sick, or sound sick. But I am sick. It was nice to talk to someone who also kind of gets it. There are other people like me out there. It's so crazy. I always just get so excited when I meet somebody else with a brain injury because you do have such a unique experience now that everyone's brain injury is different in their life.
Unfortunately, we all have a lot of similar experiences when it comes to health care. And now I'm learning a lot. We have very common stories from insurance to insurance. I'm getting good deals on things, but it's like, how feasible is this further ever, right? Botox is very expensive. And luckily right now, I have two insurances covering it, so I can handle that. But everyone on the brain injury Facebook group posts stuff and it's always insurance.
I would love to be, I'd love to be an advocate for brain injuries at a local state level someday because there's always policies thrown around. All those people that are doing that don't have an experience in that and, or a family member that has that need that care or that bill to be passed.
Once I get through my first couple of years as a speech therapist and kind of get on my feet, I plan on doing a lot more. I have a lot of good ideas for my future. It's just kind of waiting until I have the time to do them.
Mackenzie’s Blog! - Making Mackenzie (http://makingmackenzie.weebly.com/)