S10E30: What is aphasia?

0:00 My beautiful survivors, how are you? This is Karina, the host and creator behind Stroke Surviving the Odds of the podcast. The mission of the show is really to help you move forward past the events of the stroke. Reclaim your life, reclaim your identity and everything you might have lost during the stroke.

0:18 You're going to be getting it back today. I'm Karina. Like I said, I suffered a brain stump dissection 27 years ago that led me to Coma Interlockton Syndrome. Evidently, I am here with you guys today and I vowed to share everything I learned in the past 27 years that would help my community of survivors.

0:44 I want to remind you that we have an audio podcast that is available on Spotify, Google Podcast, iTunes, Apple. Make sure you download the episodes so you will not be missing anything and you can listen to it as you are recuperating yourself. Also, we have once a week video podcast that is on YouTube. I'll invite you to subscribe also because you don't want to miss my special guests.

1:12 I have all kinds of guests that are going to help you get back to your new reality. And last but not least, I want to remind you to share the podcast, guys. The more we share, the more the algorithm puts the podcast on the forefront and the more we get to help stroke survivors around the world. And just an FYI, guys, you made this possible. We are now top 4 #4 worldwide in the category of Stroke Survivor Podcast.

1:46 And there's a few out there. So we are making a difference. We are making a change. What I love about the show I'm offering to you guys is not only that I'm in it, ha ha ha, but it is one of the very few shows that I hear about moving forward past the stroke, afterlife, after stroke, everything else, our stories and and, and our story is a big, big, big, huge part. But so many survivors think that life is over when in fact it's not.

2:27 I want you to realize that. So in true Karina fashion, today I'm going to ask you to grab a pen and paper because the faintest of the faintest of ink is better than the best memory. Come and join me here today as we are recording today's show. Last night I made a post on social media and the post was asking as such. If you never had a stroke but your friend just had a stroke, what would you tell them to show empathy and compassion? Very clear question.

3:12 I can count I got about 80 different on my platforms in the groups about 80 responses. I can count on two hands the amount of people that fully understood the question. So that inspired today's episode. I realized that being cognitively affected after stroke is huge for many people. A couple of things are happening here. After stroke, we tend to read the first line or the second line and we think we know what the question is, but in fact you need to read the full question.

4:01 So just by the way people answer, I could tell and people were getting great, amazing advice. Like I could tell that stroke survivors everywhere have learned so much and are so generous towards other people that have strokes because they share willingly and openly everything that means the world to them on their recuperation.

4:34 But the operative word here was empathy and compassion. What would you tell them to show your compassion and empathy? The to answer that I have some people that said I would tell them that I'm there for them. Another one said let me know what you need and I'll do whatever I can to help you. Another one said I feel for you. I don't know what you're feeling but I feel for you because I love you.

5:11 That is showing empathy. But when we go about telling people advice, it's because we've gone through it ourselves. So I think that the message here I'm trying to convey is you need to fully, fully read questions and fully listen to people. I, this is something that I, it's still a work in progress for me, guys. I'm not going to lie about it.

5:46 After the stroke, as I told you before, I was intubated and I had a trach and I couldn't talk for three months. And as soon as my trach got covered, corked, covered my mouth, just went at it. And I interrupt people. It's a very bad habit I picked up. I interrupt not to be mean, not to be rude. I interrupt because I, I, I'm afraid of forgetting what I want to say. Does that happen to you?

6:32 I know that it's a common thing, people interrupting after stroke and people that don't have a stroke are spouses or friends or coworkers. They think that we are rude when in fact we are not. We just never mind are impatient. We just don't want to forget. So I said a couple of things that are important.

7:01 Really listen to the full question or the full phrase somebody is talking to you about. That way you can give the right answer, give great answers. You need to give the right one too. You agree? Another thing that I say that I want to make sure people understand 'cause I guess I'm not clear. I speak for the masses.

7:32 And if you don't know or you're not quite understanding, I, I expect people to tell me. Karina, what do you mean? But as a stroke survivor, I know that it's hard to raise your hand and ask questions by fear of appearing either ignorant or innocent or anything negative or stupid even. So that's on me, guys. That's really on me.

8:04 I'm going to really, I think that stroke survivors want to feel between brackets. Normal folk survivors want to feel not any different than everybody else, even though you know you are. So when I come here in the podcast, I talk to you guys as if you're everybody else. I'm not treating you any different.

8:39 The only time I treat you differently is when I give advice, when I share things that I know can help you guys. Otherwise, you're just like me because I think that I'm just like everybody else. So if you don't understand, if I talk weird, if I say weird words because I love vocabulary and I'm always looking for a word of the day, OK, please reach out to me and just say, Karina, what did you mean?

9:14 Right? So one of the things that I say that might bring confusion to you is be your best advocate. You are your best advocate. That means that nobody does it better than you. That means that nobody knows what you need more than yourself. Nobody knows what you're feeling more than yourself. People might say I know how you're feeling.

9:43 They don't freaking know, man. They, they, they don't know. Even people that don't have strokes, that never had anything like this are going to say it by habit. It's something that we say often. I know how you feel, but in reality, nobody knows because we are unique, just like you don't know how other people feel about not having a stroke because you had a stroke.

10:15 So when I say you're your best advocate, you have to speak up. You can't be quiet when you're in the doctor's office and take everything he's he's saying to face value. It's not fair to you. So by being your best advocate is also being able to say, no, I think I need something else. I think I need a second opinion. Being your best advocate is maybe your doctor told you you're never going to walk again and you went home with your head, with your tail between your legs like a little puppy, and you're so down on yourself and upset. Doctors only say scientific stuff. Doctors don't want us to expect miracles. So the fact that you're alive, the fact that even if you're in a wheelchair, the doctors are

11:22 happy about that, but you're not. So you go home with your tail between your legs. So you're going to be saying, well, the doctor said I'm never going to walk again, so I'm never going to walk again. And so if that's the way you think, then I'm sorry, babe, but that's wrong. But if you choose and you decide, and that's what the podcast is about, giving you back your choice, your voice, if you choose to go to your therapies and work your ass off to start walking again, trust me, you are. You are because you are your best advocate. And last thing that I might say, guys that might bring a little bit of confusion is when I say, is your environment conducive to your recuperation?

12:24 Conducive means that it is working with you. Is it helping you or is it hindering you? Conducive means example, me. I'm in my office living room right now. I'm surrounded by plants and my dog and there's bright light coming in from the window. For me, that is conducive to my production, to my producing the projects that I want to do to get my brain working and flowing to what I personally want. There's no major clutter.

13:07 There's a lot of blankets lying around 'cause I'm I love cuddling on blankets and at night, but other than that, there's no particular clutter. There's nothing on the floor because I trip over flowers in the carpet. That means that I can't have anything on the floor. So to me that makes me happy. Right now my juices are flowing.

13:33 I'm talking to you, I don't script, I'm talking to you. I'm having a coffee, I love it. Conducive is your environment, not only the room you're in, but maybe the people you know. And I'm not talking about spouses. And listen, I'm I'm not here to, to at all talk about that. And and not because I got divorced after my stroke 10 years after, but not because I chose that route.

14:09 That means that I'm what I'm saying. That is so not what I'm saying. But I got weird friends that were toxic to me that were energy vampires. I'm a stroke survivor also. I don't have a lot of energy left. So I put it where I need to. So my environment is not only my home. My environment is the people around me and also the information that I take from others are people putting me down all the time because then I don't want them around me.

14:46 But if they lift me up, they tell me my truth. If I'm full of shit, they're going to call in, call me out and they're going to say Karina, calm down. But they got my back and they encourage the work that I'm doing because it makes me happy. So when I use the word conducive, it's only to make you advance that much more.

15:16 My beautiful survivors. This is what I have for you guys today. I hope you enjoyed it. I hope you got inspired yourself to be your own advocate, to have a conducive environment to being so productive and not listen to everything that's being told around you. OK? And don't forget to have a little bit of compassion and empathy towards yourself.

15:43 The message when I asked the question last night, the message was compassion and empathy because we all have an inner child. And what the kind of words you would be telling your friend. I wish you would be telling them to yourself. With that being said, I love you immensely. Make sure you download the episode on audio, you subscribe, you like you follow on YouTube and you share with Sugar Bear. You share the podcast to the masses. Those are things that are free, guys. And if it's free, it's for me.

16:21 But you know what? It feels great to give to others. That being said, I love you immensely. Bye.