Hi, I'm Carrie, a stroke survivor and BIND member.
And I'm Kezia stroke survivor and a member of BIND as well and today we welcome a member of BIND and someone that is actually our new producer of BIND waves. Her name is Jeni, and we're going to have her here to welcome and share her story and her experience of having and living with, um, after having had a concussion. So, thank you so much for coming, Jeni
Hey, I was so excited to be here.
You do sound very excited. That is really fun. All right, Jeni. So can you let us know a little bit about your story and your experience?
Yeah, for sure. So, um, I am a pre-K teacher and um in September of 2020, I was assaulted by one of my students. Um I was he punched me in the head right here on my right temple. Um, and then I worked real hard and then two years later, the same thing happened. It's like the weirdest coincidence. Um different kid, different school, same spot and so it's been a wild two and a half years.
Yeah
For sure.
I know this is like the second time I hear your story. So this is every time I hear it, I'm like, oh my goodness.
Yeah.
As a teacher, you'd definitely, I feel like that's something that I wouldn't have really expected.
Yeah, you don't anticipate when you go into teaching, you don't anticipate getting a brain injury that's for sure. They don't prepare you for that in teacher school.
Well 'll give you a little heads up. They don't teach or prepare anyone for any kind of brain injury.
Thats true, they don't prepare anybody.
But, so going back to that and with concussions, a lot of you know concussions are different and people just think, oh, concussion versus brain injury.
Right.
Some concussions turn into brain injuries. So when did you realize that your injury was more than just a bump on the head? And it was having profound impacts on your daily life.
Well, a few days after I got my concussion. Um, I was at the grocery store. You know I was doing my normal, weekly grocery shopping and I remember kind of blinking out and then coming back and forgetting where I was. You know, this is the same store I was at every week. Doing the same routine I was doing, and I completely forgot where I was and that scared the daylights out of me and that's when I realized that something was wrong.
Um and then, you know, I went to the doctor and they were like, oh, it's, you know, you'll be fine. You'll be fine. But I, I, it took me a long time to get to fine whatever fine is.
Yeah. And what happened the second time.
So the second time I noticed effects immediately. So right away, I noticed that my, my balance was off. Um, I couldn't walk right. Um, I was very much in a daze. Like I was slow to respond to questions. I looked zoned out. At least that's what I was told. I don't really remember much about the second time. Um, but fortunately you know the staff at my school jumped into action and they said, this is not the Jeni. This is not the Jeni we know and was able to call 9 1 1 and get me care immediately.
Oh, wow.
So I am so grateful for that
So, so I guess, what do they do different? Like when they take it the hospital, how do they decide this concussion is more than a concussion and someone needs to stay with you. You can't get to sleep for 24 hours. Cause that's what I remember as a kid.
Right.
When did they go? No, this is more serious than just let's watch her for 24 hours. There's something really wrong.
Right. Well they did a CT scan and you know, I'd also told them I have a history of another concussion in the same spot. So they, they gave me some instructions, you know, at the hospital, they discharged me the same day. Um, but, but certain things to look out for and fortunately, since I've been through this before, I had already, I already knew. Okay. I need to watch out for dizziness. I need to keep track of my memory.
Um, I had my, you know, my medical team, like on-call that day, you know, it was like, Hey, it happened again. You know, so I could get everything I needed real much quicker this time.
Okay.
And you just said, you just talked about your memory and your dizziness and all of that. Um, after having had concussions. Um, did it affect your driving issues or like, or your ability to drive?
So that's something that my care team and I are actually deciding right now. Um, I took, I started, uh, OT recently and I took a test that, uh, measured my reaction time to like visual stimulus. And um it, my reaction time was so slow. It was, um, not not safe to for driving. So that's something that I'm going to have to talk to my neurologist about and determine if driving it right now is a safe thing for me to do.
Oh, wow. That's really interesting for sure.
Yeah. I
I think that at first, like after I had a stroke driving was definitely not safe, especially cause I hadn't seizures and now it's not that it's more likely fear. I really like to hear that you've been really trying and trying to get better and even taking that risk to take these tests cause I think at the at the time I would be scared to even take the test.
Right. Well the difference is, you know, I live by myself. So I didn't have someone to available. You know, readily to take me to doctor's appointments or take me to therapy or whatever. I had to depend on myself and my family does not live close either. So, you know, I had I had no choice. Um, and it's not until recently that I discovered there's an alternative so I'm looking into that now.
Now Yeah. That's good. Driving is a great key back to independence.
Yes.
We are scared when it starts.
Yeah I'm I'm really nervous about that. That part of independence being taken away but if it's it's for my own safety and the safety of others and I'm willing to do it sure.
Sure sure. We didn't want to do any more to integrate our brain.
Yes.
But, so you've talked a lot about your care team and your medical doctor. So did you receive the medical assistance? Did you find it adequate or not, like the medical assistance that you initially got or did you create this medical team and care team later?
So at first, um, the, the doctor, the first neurologist that I saw and basically said, this is back in 2020. He said, oh, you know, it's a concussion. You just need to lay in a dark room for three months and avoid screens and don't think and that's something that I do constantly. If there is something that I cannot not do, its thinking. And so I tried, right. I was in bed.
You know, a bed-bound for three months, um, barely getting up, trying to limit stress, limit thinking and all of that and nothing changed. And so after four months of no improvement, I advocated for myself and that's when I sought out my own treatment and I'm SO grateful for my doctors. I'm very proud UT Southwestern girly. So all of my, uh, doctors and all of my therapists are through UT Southwestern and once I saw them and I got into therapy, that's when I saw improvements.
Oh, well, so what are some of the improvements that you saw?
So like with PT, when I first saw Carly, who I adore. Hi Carly. Umm
She better be listening to us.
She will be listening.
Ok good.
Um, you know, Carly was actually the first person to like truly believe and see the struggles that I was having. Um, and when she told me she looked me in the eye and said, Jeni, I believe you. I started crying because nobody had said that before. I had only heard, oh, you're faking for so long. Uh, so to be believed was like the best was the best feeling. Um, so I basically had to relearn how to walk, how to go up, learn how to go up and down stairs.
Um, you know, like any sort of up and down movements, like it was there that was a big, big challenge of mine. Especially because my job is so physical. It's not like I sit at a desk all day. You know, I'm a pre-K teacher, I'm up and down. I'm chasing kids. Um, you know, we, we joked that pre-K is hurdding kittens and so you can't just be still and, and do do do that job well. So I had to do that. Um, I was in speech for a memory issues. Um, I still have memory issues.
Uh, if you guys know me at all, I live and die by my planner. I have it with me all the time with these color coded stickers that tell me where to go and what appointments I have when. Um, because if I didn't have that, I would forget. Um, and I also have to use my planner to write down like what I've done each day, because if someone asked what to do over the weekend, I don't know. Unless I write it down and go, oh, I went to my friend's house this weekend. We had a barbecue.
That was a, that must've been fun. Yeah. Cause I don't, I, I have very little memory of it.
Yeah. I actually am really proud of you and just saying all these, um, what you've been working on them along with what your biggest challenges are because you've been saying your challenges and how you've been working on them, them together. So that's pretty awesome.
Yeah.
Very proud proud Of You. That's really great.
I'm pretty proud of me too.
Good. Yeah. That's good. You should be.
And can I talk about, so you mentioned you're going to, you know, talk to your neurologist some more and you've got your, all your UT people. So what are the other maybe other than just your, your binder that you're doing on your own, are you doing other things still with recovery? Are you still in PT? Are you still in speech? You still working towards those things?
Yes. So I'm still in speech. Hey, Liz. Um.
I think we haven't, we're going to have like top fans.
All the shout outs, I'm going to shout out all my people. Um, so Liz, who I adore, um, you know, I'm still in speech. I see her every week to every other week. Um, and we're working on memory recall, you know. We've worked a lot on deductive reasoning, um, remembering to do basic things like eating. That's one of the things she asked me, every session, Jeni, have you been eating? And I'm like, uh, I think so. I have, have I been eating? I'm not, I'm not sure.
Um, you know, and building a consistent schedule and things like that. So that's, there's that, and then I'm also, I just started OT, so, Hey, Megan, I'm not going to leave you out. Um, And, uh, so I'm with that and working with hand-eye coordination, visual scanning. Um, one of my big goals with recovery right now, it sounds so trivial to a normal to normal people, but to people with brain injuries like us. And wildly want to go to the grocery store by myself.
Oh, nice.
Um, and right now I can't do that at all. So, you know, I go to the grocery store with support once a week and I literally just follow people around with the shopping cart. And that is enough to wear me out for the day at this point. So.
Yeah.
You know, being able to do those independent self-help skills.
Sure, that's not trivial at all.
And I can't. Um, you know, I could not do it without my my care team and I'm so grateful for them.
That's great. I honestly didn't even think about it. I have not gone grocery shopping by myself. At all, because it's really overwhelming.
It's so overwhelming
And just looking at the lines and I didn't think about it that that could definitely be an issue because for me, I was just like, even thinking about it, being in the line and searching and walking around and like having to read where things are. Oh my godness.
There's so many steps to grocery shopping that people can take for granted. Yeah. And it's really complicated when you think about, you think about it and break it down into all the steps.
Yeah. OK I am going to break you on grocery sharpen for just a quick second. And ask our listeners to go ahead. And click that like button and share button and continue listening. And I will say I understand grocery shopping and I, I cheat, not really, but I need it. I ride the scooter. I do make my list before I go. I have my dad goes with me so he can carry all this stuff. Hey. But he rides the scooter back. He puts a scooter back, you know, But yeah. It's something definitely. Normal people.
And he's like, don't think about that sometimes grocery shopping is not a one person job after a brain injury.
Right, and I mean, fortunately I, I can get my groceries delivered. Thank goodness for technology.
Oh, yeah.
Um, so, you know, I'm glad that I have those, those things accessible to me.
Yeah. And honestly, you've been talking a lot about what you're using to progress to make changes happen and like work on yourself and continue to recover. Um, is there some, like they have more future plans like that working on a for an a couple of months or next year or two years like, what are your future plans overall?
Yeah. So for the future, um, I, so right before I got my second brain injury, I started grad school. I'm getting my master's in social work from UT Arlington. Go Mavs! Um, And I did that with the goal of working with brain injury patients because you know, my first go round with recovery. I didn't have anybody that understood what it was like to have a brain like ours. And, um, I really wanted to be that empathetic ear and support um, for people who are in recovery.
Um, and I was told by my professors Jeni that's too niche. No one, there's not enough people with brain injuries for you to be a social worker with brain injuries. I found out that it's wrong it is.
That is wrong.
That is not true, that there are lots of opportunities for social work with brain injury. So that's my like ultimate goal once I graduate and get healthy enough to like go back to school and things like that, that's what I really want to do.
That's great.
And I think that's a great goal, especially cause you had it even before your second, yeah, concussion. So I think that everything in. I don't know. I positive way of thinking things. Things happen.
Yeah.
And that like, things happen for a reason, but there's always a purpose.
Yes.
You know, so I think that'll be great for you. For you.
Yeah there is magic in this mess for sure. For sure.
Absolutely. Sure. Sure. So, do you do your goals also in plan? Do you want to go back to teaching preschool, go back to teaching your job? Can you go back to teaching?
That's a great question. Uh, the jury is still out on that at the moment. Um. Just judging from what my medical team is saying. I can't teach right now. Yeah. Um, but you know, if I can go back, I will go back it. Everything is up to my medical team at this point, and I'm going to follow their recommendation.
Sure. Well that's and again, I'm so glad that you found a medical team and that you have a group of people behind you and I mean, I wish I had thought of doing something like that more than just, you know, mom and dad having to be responsible for it all. I'm so glad that you have that. Yeah, for sure. Yeah.
And now it does look like you have us here at BIND.
I know.
So, how did that happen? How did you hear about BIND? I mean, you're a teacher you're definitely more involved at the time before all this happened to you and like a like a lot younger years and years and years and years before. All of us here on this table, but like, how did you hear about BIND?
Liz it's I'm here. It's all Liz's fault. That's what I tell her.
No Liz, thank you very much. We appreciate you.
Yes, Liz at UT Southwestern Frisco. You know, I'm her favorite patient? So.
Okay. Now you're going to put this sticker on yourself too.
She knows. Everybody knows. Um, so Liz, you know, we were, I was really dealing with isolation and really struggling because I'm very much a people person. And so being at home alone, watching Netflix all the time and just being in bed with my cats, as much as I love my cats. Um, it wasn't good for me. And she goes, I I think you need to do find somewhere to go. And she goes, have you heard of BIND? And I was like, Hmm. No what's and she told me, and I was like, this place sounds so weird.
I don't know. So then I came for a tour and I was like, I don't know. This place is still weird but once I, um, like started coming because she was strongly recommended that I come, she was like, it's going to be so good for you. It's going to be so great. Um, that's when I really realized like how, how much how much BIND can help me. And how much it has helped me. Um, like where I was in terms of like my mental health in January, when I started compared to now it's like night and day.
Um, like everybody in my life has noticed for sure. And what I love most about BIND is that here I feel capable. Like here I feel like I can accomplish things and I feel normal here and when I go home or I'm with my friends, I have to feel, I have to really be very careful with like accommodations and my energy and you know, what can I can't I do, do I, you know, do I have enough energy to go hang out with this friend or whatever. But I don't have to do that as much here.
And when I crash here, I'm like, all right, y'all, I'm going to go home and take a nap. And everyone's like, okay. Bye. Yeah. You know, it's just the most supportive environment ever. And in a lot of ways, I wish I had known about BIND my first go round, but that's okay. You know, I'm here now and that's, what's important.
So talking about your mental health, because I know that we all need to struggle with that, but, so how has your experience of having a concussion affected your um, perspective on life. And in the beginning, maybe it sounds like it was not so good, but sounds like it's getting better.
It's it's getting better for sure. Like I already know. I have a long way to go, right? Like I can manage here at BIND for a few hours and then I literally go home and take a nap and I'm like done for the day. That's where I'm at right now. And that's totally okay. You know.
I'll tell you, Jeni it is totally okay. Yeah. I've been coming here for long time and I mean, in the beginning, I mean, just thinking back even, you know, just a year and a year and a half ago, whenever that was when we did our first round of podcast and we actually did several in a day, we both went at the end of the day. We were like uh uh. Go home take a nap thats that's very normal for those with a brain injury so.
For sure.
And we've had several members that start with an hour a day and work their way up again. That's why we're saying right. Come as long as you want. Right.
As long as you can tolerate, right. So, like, that's so much better. Um, and like, I, you know, I could say like you said by like my perspective is, you know. Part of me is really frustrated that, you know, the universe conspired that that I needed another brain injury for some reason, like I said, there's magic in this mess.
Yes.
Magic will come from this. Um, and so there's about gotten to the point where I thought, well, if I can get better once because I've done it once. Then I can definitely do it again.
Yeah.
And I will, because I tell Carly I'm stubborn and she goes, no, no, no, Jeni you're not stubborn. You're persistent.
There you go
Persistance. Yeah. Good word.
So I am very persistent and have not learned to let someone dictate, well, you can't do this. Because then I'll just go watch me.
Exactly.
And I love it.
And I'll do it.
I I love it, I love your answer over all of this. But I do want to ask you, what would you give as a tip for someone that would be, um, probably having a concussion or someone that would be with someone that they love? What is your number one, tip, advice?
So just as for concussion and really you know, for brain injuries in general, find support. Um. Having your brain injury can be so isolating. Um, I know that a lot of BIND members have felt that isolation before they came here. You know. Find, there are other, you are not alone. That's the biggest thing. You're not alone. You're not unique in your situation. There are others like you and we're here for support. So find, seek out support.
Um, for the loved ones of someone with a concussion, believe them. Take them for their word. When they say they hurt, they hurt. You know, cause I'm not one to say. I hurt I'm not one to admit that I'm in pain. Right. I'm used to be too proud for that. I can't do that anymore. So when I say I hurt it's because I'm hurting. If I say I'm tired and I can't go, it's not for lack of desire. It's literally I can't move and I have to take care of myself. So just take them at their word, believed them.
You know, have patience because we're, our brain is all kind of we're rewiring our brain. And, um, it's going to take some time.
Yeah.
You know.
Thank you so much, Jeni it's been a great episode thus far for sure. So much for being here and I want to thank all of the listeners that are listening to us and Jeni for this episode.
Thanks guys. Sure.
Sure. And remember if you'd like to contact us, you can email us at bindwaves@thebind.org. Visit us follow us on Instagram and also check our website at I'm looking so I don't make sure I say it right. The website is thebind.org/bindwaves. Again, follow. Check us out, email us questions, concerns, ideas. We'd love to hear them.
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Until next time.