Brain Injuries Don’t Take a Day Off

We think about, like, what happens at the hospital, what happens at rehabilitation, what kind of Occupational Therapists did we have that really helped us in recovery, Speech Therapy, Physical Therapy. But when we get home, a lot of things happen that we didn't even think about, our family didn't think about, um, and our friends didn't think about. So we're going to be talking about that.

And as you hear in every episode, you realize that a brain injury and after a brain injury, just our life changes. Um, so we're going to talk about today on this episode and then the next couple of episodes you're going to be hearing about it. Um, just day to day life and day to day life skills that we just had to relearn about it. So I hope that you guys find this episode really interesting and that you enjoy the conversation between Carrie and I.

I couldn't use my left arm, my fingers. So in, while we're in the hospital, that's what you think about. That's the first thing we learn how to do. We learn how to just stand. And they call it weight shift, so that you're not just standing all on your good leg. You're standing balanced proportionately on both legs, which is very challenging and hard.

And for me, because of the way my ankle rolled, I had to get what we call an AFO, it's an Ankle Foot Orthotic, to even, before I could even take my first steps. So that's a lot of things you have to learn about, is, you know, not everyone needs an Ankle Foot Orthotic, but that doesn't, like, so like, you don't need it. Most people with their foot like this, mine does this, I can't put it down flat. So I have a brace, for lack of a better word, that keeps my foot flat.

So that was a new change for me, because I still cannot walk without that brace. That gave me the independence to be able to walk. But when I first went home to live with mom and dad, you know, I, could not really walk. I was, I barely could transfer from my wheelchair to the bed, from the bed to the wheelchair to the car, that kind of stuff.

So. Mom would have to roll me to the bathroom, get inside the bathroom, pick me, you know, help me stand up, and then we would have to, she would have to walk me into the shower to sit on the shower chair, help me take this AFO off, and then unfortunately, actually, she had to help me shower, because again, my left arm didn't work, so, that's a lot of fun 38 years old and having your mom shave your armpits for you. I do not recommend.

And I didn't realize, and neither did my parents realize, that moving back to, at the time, my apartment, my bed was too flat and I had to get pillows and I had to be told that I had to stay still in my sleep. And I'm like, I sleep on my, like, arm, like, normally. I don't sleep on my back, I don't sleep on my belly. Like, I move in my sleep. But at that time, I, my parents had to be educated that due to the surgery that I had, and that I didn't have part of my, my skull, my cranium.

I was not allowed to move in my sleep. So I had to like, get trained on how to sleep going back home. Oh, that's crazy. Yeah, and it was so uncomfortable. I honestly don't even move in my sleep till this day. Like, I think I just like, think about it. And I, I mean now I do move like a little tiny bit, but I don't move that much because I had to stay still, and I had to have pillows. And then when I moved to Texas, I actually got a new bed that like I can use a little controller.

So no, you don't want to do that. Um, so that's, that's a lot of things you didn't think about. And then this is another one that I give people a hard time about, or not people, but guys, when people were talking about, you know, you have to relearn how to dress, you have to relearn how to dress yourself. Like a lot of people don't think about because of the left side paralysis. I have to put my left arm in the sleeve first. And then my right arm, and then pull it over my head.

Same with my pants. The left leg has to go in first, and then the right, the right leg, because it just, it doesn't work if you don't, I mean, we used to do a, we had an event at our Gala years ago where I would, we brought, like, button up shirts, and we would, we would have our guests try to put it on. We would say, okay, pick an arm, and you're paralyzed. Now put this shirt on. And they would always put it on the good arm first. And then they couldn't figure out how to get their shirt on.

So, a lot of fun. A lot, a lot of fun. Not really.

These two fingers, I can't feel that much. And the third one, I can, I can kind of feel it. But like on this side, I can't. So it's like, I burn myself a lot. But yeah, it's so hard that like these are things you learn like in your, you know, in the teenage year and your practice and how to get things right. You know, dress yourself up and then like at some point something can happen and then you forget and then you have to relearn these skills

So in the summer I can put it in a ponytail well. How do you? Put your hair in a ponytail when you only have one hand? Can't figure it out. I've been trying to work on it So now I have short hair because trying if you think about it, most people have big brushes, when they blow dry their hair, they curling irons, flat iron, flat irons. They have all this stuff to make to fix their hair. I just blow dry my hair and go on about my day.

'cause yeah, it's, it's just those things you don't think about that you have to totally relearn, like you wouldn't think you would have to relearn how to walk, how to dress yourself, how to take a shower.

Uh, when I was actually in rehabilitation, um, in Chicago, I, uh, I thought they had these dogs there for me to make me feel happy, and like, I could pet dogs. It was great, but I later understood that these dogs are coming to me, so I can practice speaking with these cute cuties, these dogs, so cute, uh, and really learning how to say words correctly, because the dogs will not follow what you're saying if you don't say it correctly.

I think in a hospital, in rehabilitation, you're seen as you need help. You're seen that way. Uh, but at home, you're, like, I was looking, right? I look normal, right? So how do I explain that to people and how do I, uh, have my family understand that, especially if like, for example, my brother wasn't at the hospital a lot.

He didn't see me that in a traumatic kind of way, but he needed to learn how to have the patience to talk to me and how do I treat myself with grace and with patience for me, myself, like how do I talk and how do I communicate what I need? Um, because in the, um, Hospitals, all of those people are very aware of patients and help and how to help people, right? They're the doctors, the nurses, the therapists that have this day to day experience, but our family doesn't.

So, it was definitely a challenge, um, being back home. So, it was, it was very difficult.

I mean, I moved home, a 38 year old independent woman, who now is a 38 year old woman, wheelchair bound and needs a lot of help and they no longer saw me as that 38 year old independent woman. They saw there, I don't even know what age they probably were trying to treat me as, but a teenager, let's just say that, that needed help with everything. Not a toddler, but, you know, but consonant, do you need anything? Can I help you? What can I do for you? What do you, what do you need?

You know, and I, it just caused frustration for me, and I didn't know what to do, so it took a while before I realized that I had to sit them down and say, Okay, we have to talk like adults, we have to have a real communication, you know, and talk about how we're gonna work around in this house. You need to give me the chance to be independent. Now, if you see me doing something unsafe, absolutely come and stop me, but If I want something, I will ask for it.

You don't have to constantly ask me, do I want something?

Um, I was going to say about your, um, experience with boundaries. Uh, we've had actually In the future, in a couple of weeks, you are going to listen to us, um, like you listeners. We're going to listen to episodes that are talking about these topics from our guests. Uh, one of our guests actually is a, um, chaplain. Chaplain. Chaplain at UT Southwestern. Yeah, and he talks about these experiences he's had, uh, with, survivors, but also with the caregivers?

And how do you, how do you do with that? Right? It's really interesting, for sure. Um, and then also, I think on behalf of the communication with families and the brain injury survivors, when do you say that you need help? It's very difficult. Um, but also like, for on my end, um, I don't have any, um, mobility issues, but really, how do I get back to where I was before at managing my own money, managing, like, my own scheduling, what I want to do with my days, um, that was very difficult.

How do I take my medicine? I went from never taking medicine to all of a sudden taking, like, so many medications. medications, and when do I pick them up from my doctor? How do I ask? I don't understand what these, these, this medicine is for. Um, it was definitely difficult, um, just learning how to control your own day to day life. Um, and that's something that we had to relearn, and not only us, but also our patients. Our family, our friends, um, that are going to be there supporting us.

And, hey, do you remember that you need your, your seizure medication by 8 a. m.? Um, your blood medicine needs to be at the same time. If not, your, your INR is going to be different. So

Practice that, but then you also have the, you have to figure out how to remember to, when you're low, Reorder new prescrip reorder your prescriptions and it's, you know, that sounds so simple and so easy for everyone normal day to day, but the thought processes that have to go into us remembering, I mean, just remembering things in general. I know my short term memory was a big deal in the beginning, too. Um, but I, you know, everybody has to find their own coping skills.

So, for me, from coping skills, what I learned, I mean, I don't know what people did years ago when we didn't have smartphones. I would email myself from my phone, like when I was here at BIND and I knew I needed to do something when I got home, or if I was out wherever I was, I needed to do something when I got home, I would email myself. So, when I got home and checked my email, I'd go, Oh, that's right. I need to reorder this pill. Or, I need to do this. Or, I need to check that.

So, I mean, and again, everyone's different. But, every brain injured survivor has to relearn all the basics that you don't think about. And some of, like, we have one friend, Carl, well, y'all know Carl, Carl H. He's been a co host with me. He likes to say, um, We're the children and the staff here are the adults.

Because, after a brain injury, You do feel like a child again because you're relearning everything, how to walk, how to talk, how to eat, and I didn't even mention that earlier, how to eat. So for a lot of stroke survivors, um, I'm not going to say this right and my speech therapists are going to come back and get me, but that's okay, um, but because of the way the esophagus is and whatnot, and I don't know if it was because of the facial droop I had on the left side because of the paralyzation.

Um, they worry about you being able to swallow and choking yourself to death. So, you have to go through a swallow test before you can eat real food. So, I started out on like, thickened liquids. Just nasty, nasty stuff. Um, thickened liquids and pureed foods. You know, and then you gradually, you know, you have to take these tests. You swallow barium, they watch, you know, where it goes. And if you're swallowing correctly, I think I took it twice before I was allowed to eat real food again.

So, I mean, again, you know who, who that hasn't had a brain injury thinks that you have to relearn how to eat? Or how to just swallow water. Like, I couldn't even drink just water. I had to eat ice chips in the very beginning.

Um, and I literally signed up for the Chicago Marathon. I was still in the hospital, but I was like, well, I can walk now, you know, I can walk now. So I'm sure by October I will be a runner, right?

So I didn't understand my limits, my physical limits, but also like, even when I was already in Texas, understanding my cognitive, uh, disability, well, not fully disability, but my, how the stroke changed my, my functional, like, skills, like, how, how, when am I going to be able to manage a, a, a team? Um, and that was very difficult. And like, how do I multitask? How can I think about big solutions in a big picture kind of way? Um, that was definitely very difficult.

And we also have a great episode coming up within this couple of weeks about someone that just became, was able to start working. Um, even when he was in recovery at a, a recovery, like, I don't know if we can say this, but CNS, um, how was he able to manage recovery and being able to go back to work? And that's really just questioning and understanding your own skills and what level are you in and being very clear on yourself and then also who you talk to, right?

Um, that was a very interesting conversation that we had. How do you do that? Um, and then also just the people around you being, um, supportive and he had some pretty cool, a pretty cool boss that was able to stand with him.

So, making new friends is fine and it gets easier, um, especially if you're like Kezia and I, I'm pretty social anyway, doesn't take much, but, um.

Uh, but if I'm not, like, relaxed, like, slept well, if I just didn't wake up to have a good day with all my energy, like my whole brain charged to 100, it is so hard. It is so hard, and the socializing part was definitely hard too understand I think on my end because I was like always judging myself like, oh my god I went to get pizza in Chicago.

My mouth is already really like so hungry for pizza but anyway I went to go get pizza with my friends and it was like the first time I was in pretty comfortable going into social platforms and go somewhere with a lot of people. And I was with these amazing women that were there to support me through my recovery, to support my friends, I mean my family, to learn about aphasia and all of these things. And I was like, I'm so ready for this.

And then I get to this pizza place in Chicago, and it was packed. And there was music and it looked so fun. But at that time I somehow found myself in the corner with amazing women there supporting me. But just, I was having such a hard time to keep up with the conversations. And that day I was like, I can't do this. And I still have a hard time doing that.

I prefer one on one conversations because I truly can gather the conversation to 100 percent and traveling and meeting my friends, I need that like 100 percent and my full attention to that. And I would love to meet in a pizza place with a bunch of people, with music, with, with, you know, but I would need to stay in Chicago for like the full year to like, you know, be able to do that again. And at first I felt so bad. Like they probably think that I don't want to be here.

They probably think that I'm ignoring, they probably think I'm being bored, but really that's not the issue at all. It's just the difficulty of conversing in large spaces.

He may even just have to leave, you know, and we understand that, like, and he's a big hockey fan, but I can't take him to the hockey game with me because it's just too loud. It's too stimulating. Um, some of our brains just can't recover to that point where we can handle that much stimulation. That seems normal to anyone else. I mean, can you imagine being a big rock concert fan and after a stroke, you can't go back to a rock concert. A, it's too loud, too much music. Too many people.

I mean, I worry about people for my balance that someone's going to just knock me over. So, I know that it's kind of scary, but we just, like we said, we want to just kind of share a little bit about our lives. We know you've learned a lot about us over the time, um, but the next couple episodes after this one are, like we said, you'll be hearing from a different couple of people, like the chaplain who's on communication, a gentleman who had a stroke, who's gone back to work.

We have, um, I don't remember who else we, um,

There is also a, probably there's a link to our email, and there is a form there if you would like to become a podcast guest to fill out and say what you want to talk about, what you think needs to be heard or said and shared, and as well if you're looking to be a member of BIND, there's a form there to fill out. So again, just check out all that good information.