S10E41: COMMUNICATION & UNDERSTANDING BETWEEN SPOUSES (guest, Mike Jankowski)

0:00 Hello everybody. How are you? This is Karina from Stroke Surviving the Odds. The show's mission is to help you move forward past events of the stroke, help you rebuild your life, rebuild your identity. God knows, a lot of it shifted when the stroke happened Myself, 28 years ago. I had a brainstem dissection that led me to coma Interlochen syndrome. At the time I was 25 years old.

0:29 As you can see, I am living life to the fullest and you are very big part of it such as Mike is as well. Our guest today. So make sure that you follow us and you know that we are on Spotify, iTunes, Apple, Google Podcast. So you like follow and share, share with Sugar Bear. We are now on YouTube.

0:57 That's why you're seeing this right now. Every week I have amazing guests ranging from stroke survivors, authors, physicians, dietitians. We have an amazing list lined up for the whole year and today is not any different. Mike Jakowski. Am I saying it right? Mike Jakowski is not only a husband, father, brother, grandfather, but he is also a volunteer, very big advocate and volunteer for the National ofpasia Association and also a very important member and also advocate for the, let me read this correctly, the Crohn's and Colitis Foundation.

1:50 We're going to hear a little bit more of his story. That is wow. So Mike is unable to work physically, but guess what? He's got the gift of gap. He's got the personality to match it. So he's making his physical inability of working an asset. He's working his ass off. I would like for you guys to to welcome Mike Jakowski. Thank you so much.

2:19 I appreciate that so much. I appreciate. It you're very welcome. You're very welcome, my friend. So tell us for a little bit about you before the stroke, before we get into the meat and potatoes. I want to know you as a man. So before the stroke I was working two jobs. Three jobs and volunteering at the same time as an EMT rescues tech.

2:57 I worked as a basically a security guard. My God. For a department store full time, I was working for Turkey Hill as the they called it the beer manager. They were putting alcohol in some of the stores, so I was managing a store and I was a paid EMT with a vacation resort in the Poconos. Wow, so those are your three jobs?

3:38 Yeah, three jobs. OK. Yep. Yes, yes, yes. But those were your three paying jobs. Wow. So let me get this, Mike, right off the bat, you're telling us that you felt like Superman before the stroke. You could do it all. I tried. I tried. OK, OK. And on top of that, I was a husband, dad, grandpa. I was all of those things, but I had them in the wrong priority order.

4:18 I put my job one, I put my job is #1 above everything, including health and including my family and. It takes a very, it takes a very strong and self assured man to be able to see that and acknowledge it. So congratulations. Thank you. Thank you. It it it took a lot to realize that and thankful for the stroke that I had the opportunity to realize my wrong ways and fix them.

5:08 So what I'm hearing here, Mike, is that because a lot of people, the Ruff, we ruffle feathers, you, me and many others, we ruffle feathers by saying we are grateful for the stroke because it humbled us. It brought us back to priority. A lot of people don't get that and I don't, I don't want to offend anybody, but this is how we feel, right?

5:36 This is how Mike feels. And can you tell us before we go into, so now we know you before, right And before we find out about you after now all the beautiful work you do, do you feel like bringing us back in time into how the stroke happened? Why you think the stroke happened? So I know why this stroke happened because again, I wasn't doing all the things the doctor said I should be doing. I had high blood pressure, I had some other things and the doctor would say take this medicine and do this and and watch your intake.

6:30 I was too busy for all that I was. I I skip a dose of medicine. Oh well, I'll get it next time. And it it went on like that. And one day, you know, Fort fortunate, unfortunate, whatever, my wife was off of work to have a procedure done on her eye and we were both off because I was going to take care of her the day after we were both off so she could recover. I was sitting in the living room watching TV. She was resting in the bedroom.

7:17 And that is all I remember for about two weeks. I woke up from that and I had had a massive hammer hemorrhagic stroke that came very close to ending everything ending. So while your wife was recuperating and resting in the other room, you are in the living room having a stroke and fighting for your life? Basically, yes.

7:59 And wow. Wow. How does your wife Anna feel about all this now? It is very hard to think about and I I can never and will never be able to understand how she felt it. But it was very scary for her. And what? You're kidding. I all the people that I would run calls and fires and stuff with were here in my house trying to save my life and get me to the little it again.

8:49 I was unconscious. I don't I don't remember any of it. And her fear, I I've heard what she has to say, but I can never understand that fear. Oh, my God, I can only imagine. I, I my heart goes with, with your wife. Of course it goes with you. But at that moment, oh, yeah, I'm sorry, but it has to go with your wife. I'm sorry.

9:20 Absolutely. Oh my God. OK, I like what you said, that you've heard her say how she feels about it, but you will never comprehend and you will never be able to fully understand how she felt about it. And that makes a lot of sense, Mike, because our feelings belong to us. And just as people can tell us how to feel, they can also not tell us how not to feel. That's.

9:52 Correct. That is awesome. So I mean, I think that your wife is just as strong as you. And this story specifically is the first story I hear in six years I've been working with stroke survivors. It is the first story I hear where I can see the impact of a stroke survivor and a caregiver. I'm always saying that the stroke is like a tornado. It deshuffles everything around.

10:30 It does. You had the biggest impact, right? You have the physical disability, the aphasia. But for her, psychologically, she's wow. You know, she is Puerto Rican and I call her and she's in my phone and everything. She's called Miroka. What does that mean? It means my rock. Rock, yes, my rock.

11:07 And for everything that she has been through and put up with and dealt with from me, she is nothing less than the rock of the entire family. No doubt. No doubt she is. I could not be more fortunate than to have her. I'm going to ask you a hard question like because I sense you can take it and I do like to ask hard, hard emotional questions.

11:48 Before the stroke, did you feel like this about your wife as as as much as you do now? I I would love to sit here and say without a doubt, yes, I felt this way. The answer is I like to think I felt this way. I did not feel this until afterwards. Beforehand I would tell you she was my everything and she was all that I ever could ask for and she she is every minute.

12:37 But. I wasn't taking anything properly the way it should be. Yeah. You know. But you said it at the very beginning like. Yeah. What did you say at the very beginning of all this? About. There you put you put your work. Of. Grace no, you, you put, you were putting your so I mean you were putting your work before everything else. Oh, without a doubt with.

13:10 And now you're putting her and the family before. And and, and that is, you know, I I had to re evaluate what is important in life and her and the family are more important than anything. And you? Yes, but to me, her, us, the family. Get it? That is beyond it is much more important than work and everything else, like everything else, will fall into place. I'm so proud of you for saying that. Thank you.

14:06 Thank like I can't stop thanking you because so many survivors that we know together feel alone and lost and you just shed a big light on on where priorities lie. And I'm I'm fortunate to realize that before it was too late. Before it was too late. Can I ask you that beautiful mind of yours? What clicked?

14:37 What? What what made you become the man you are now? The advocate, the volunteer this the the the successful stroke survivor that I see in front of me right now. You are living a good survival life. How? And I know people are going to be. Pissed how? Do you do it? And that's and that's fine, but this is the truth of what I've been through. OK, I'm going to tell you a quick story of my amazing wife and what she did when I was in therapy after the stroke. I was in a very dark place, very dark, very down on me. How am I woe?

15:26 Why does this happen to me? One day she walked up to me. She had tears in her eyes. And the one thing about me, I don't like it when my wife is crying. I don't like it when I'm the reason why she is crying. And she kissed me on the forehead and she smacked me upside the back of the head. And she didn't like and she did it 'cause she loves me. And she looked at me straight in the eyes and she said snap out of it.

16:01 We all need you. And she walked out of my room crying. And it was that moment when it all snapped in my head and it I realized that all I needed to get to work, I needed to get things done. I needed to reprioritize what was important and know what I can do to be useful because it's not about how the stroke affected me. At that point it became how is the stroke affecting us? Because in my case, everything that happened and affected me was not affecting me, it was affecting us. She was going through it just like I am. For better or for worse, right?

17:14 I think that that this particular case is living proof of better or for worse. It without any hesitation. Yes, with SO. Now your mind was like, gung ho, I'm, I'm, I'm, I'm, I'm full speed ahead. I'm doing what I got to do because they need me. You have, it was, like you said, a switch in my head and I went from why is this happening to me to what do I get to do now?

17:49 How do I fix it? Exactly how how am I, what do I have to do? And the next time the therapist came in, I said what do I need to do? What are the goals? And it's funny because the doctor said you will probably never walk again. And that just I'm like. Challenge accepted. Don't. Don't push the red button.

18:17 Well, guess what, You just push the red button. Mm hmm. Mm hmm. Two months later, I walked out of the rehab with a Walker and I walked to the car. There you go. Bam. That's how you do it, baby. And, and, and you know what, At that moment, I realized anything is possible. And everything changed.

18:42 Everything changed. And it was on my shoulders. Yeah, things that were going wrong is because I was work, work, work and everything else when it could fit. Now family goes and everything when it fits. When you volunteer for the aphasia, the National Aphasia Association, when you do advocacy for them, what is your I forget the word what's, what's the part of the aphasia, the platform? Any platform that will let me share it's everybody's different.

19:38 When you break an arm, you break an arm when you have aphasia. If you saw me with aphasia and somebody else, two different things, nobody has aphasia the same way. And it's amazing how some people do and sharing tips and tricks and anything. Will help one person. That's all that needs. That's all that matters.

20:17 I agree. One person. That's it, That's it. Yeah, we don't. You can't change the world as in a unit. You have to do it one person at a time, right? That's it. If you can, you know, I, I say this all the time, if I can help one person with one issue, then everything I do is absolutely worth it. Absolutely worth it. One person.

20:51 That's all. So, you know, so I'm going. To ask you, because we do have a lot of listeners that are that are affected by aphasia. So what would be maybe a trick or a strategy that you could help people deal with aphasia and work on it? I I've done a couple of videos myself, but I have not had a lot.

21:18 I've had aphasia for about 3 months. The big aphasia, OK and and slow, but I, that was the part of me that worked a lot 'cause when I was in the hospital I was like this. Slowly and gradually my, my, my speech therapist would make me go down and down and down. What would you recommend? What would you recommend at home to do? Don't ever stop practicing.

21:51 Practice what? You talk just, you know, one of the biggest helps is just talk. Just like me, we talk with my wife. We talk for a little bit about anything. Practice. Don't, don't stop. If you have trouble talking, practice talking. If you have trouble reading, practice reading. If you have trouble writing, practice writing. Because aphasia is not only speech, right? What is it exactly?

22:32 Can you tell our audience what it is? The aphasia affects your ability to communicate, whether it's talking, reading, or writing. Some people aphasia cannot read, or they don't comprehend what they are reading. Some people can't write because it all you, you got to practice. Some people can't talk. Some people with aphasia can't make words at all and you have to just practice it all.

23:17 You have to keep trying. You know when they say practice 30 minutes a day? Man, practicing 8 hours a day to get back to where I am at it's. A lot of work man. It all the time. Every. Even now, four years later, I still practice all the time. I want to, I want to ask you something funny when you wake up in the morning, OK, Because I'm laughing because I'm affected in the morning, OK. When you wake up in the morning, can you speak clearly or does your wife tell you I can't understand you? You're talking like a hot potatoes in your mouth. In the morning when I just wake, there's times where she's like, you know, she calls it a a reset, just hold on and I have to wake up a little bit and then

24:30 it's good. But yes, I have when I'm very tired. I get you're saying I I. OK, yes, so, so this right now that what you just said, what your wife tells you, just wake up, stretch, wake up and then talk. Yes. That's a good tip. That's a good tip to give people that have aphasia. Yes, and you have to trust yourself. You will know when you need to take a break, take the brakes when you have to.

25:12 Don't push because you're not helping anyone. If you think you need to take 10 minutes and not talk, then that's what you have to do. My wife knows that if I say I just, I need to to not think, she goes, OK, let me know when you're ready. And she turns around and she starts doing something else. There's no question.

25:47 No judgment. There's no why no. Question. Nothing. It's OK. Let me know when you're ready. I love that I I think that your wife needs to come and do a live with us. You know. What She sounds exceptional. She understands. And that is important for couples. She understands and she doesn't question as long as you explain why things are happening, she's good.

26:28 But don't just throw something without any reasoning for it. You know, So she wants to know. But absolutely there's there's your 10. Minutes. So. OK, that sounds, that sounds like a plan. I'm already thinking of the next time we're going to see each other, that we're going to have a, an, an aphasia event. I, I cause 'cause you know that I, I like the nonverbal communication for people that have aphasia after stroke because many feel like they're not sexy, how they talk. They can't, they can't, you know, it affects the intimacy, not the SEX act, the intimacy between two people. And you right now are saying that it shouldn't. There's a lot of respect that has to be had with people with aphasia and their caregiver

27:35 spouse. And it takes a while to accept that what you're saying does not just, hey, OK, it's good, then we're good. It took me a long time to respect that and believe that that. You still have it. The hesitancy or at times, but she is very quick to remind me that it is not an obstacle. It's not. It's not even a concern.

28:20 Love it. Not even a concern. But I want to know what was in your mind at that point when you did not feel like Mike. Now we're we're going into another conversation. But I think it's important for people with aphasia. I'm going to make sure that this is part of the description of today's video because this is a huge part. So I want to know how you what was your thought process of not feeling like Mike?

28:53 What made me not feel like Mike it was not being able to do all the things that I loved to do. And that was. In an intimate context, right? So hold. Hands. Yes, OK, it is hard to How do I say this? It's hard to be caring and loving and intimate when you can't find a word or you say something wrong or things like that.

29:41 All those things, yes, take the mood and it's out the window. I get it when you have spouse or a partner who doesn't hear all of those things, who just hears you. However I need to say it or get through it man Again, nothing. I can't do nothing. Love it. That's amazing. Wow, you, you both sound very you're growing into, you're growing into this new life, into this new habit. Yes, every day.

30:36 Now my friend, wow, I'm so proud of the both of you. Honestly, I can't wait to meet her. But I do have a show to do, and I want you to give us a little glimpse of why being an advocate and a volunteer for the Crohn's and Colitis Foundation. Why does it mean the world to you? Why? Why do you do it? So I have, I was diagnosed in 2000 with Crohn's and it changes everything that you think you know. I've had to adjust how I eat, what I eat, when it flares, what you can do during a Crohn's flare. I've been through surgeries and procedures, countless, countless.

31:47 I couldn't count. I couldn't use two hands to count them all. They it's just getting people who get new to this and they say you have Crohn's, this is what you can do. Well, there's 1000 different stories and books and everything else you can read. But if you talk to somebody, to me, it's so much better than the. Connection.

32:24 Reading it right, so and you know that saying is if I don't know the answer, I will find it for you. That is a powerful thing to say to somebody because I am not going to say anything that I don't know is true. Straight up. If you ask a question and I don't know, I'll find out. Or you probably find that here.

33:01 It it, it, it will go 1,000,000 miles. Better than lying and saying, eh, maybe, yeah. I agree with you, Yeah, there's nothing. Nothing replaces human connection. And I find that in the era of AI and phones and everything electronic that we live with it. It kind of removes that human touch. It it is.

33:36 While it's convenient, it doesn't replace something that we all just need. Uh huh. Yeah, exactly. Even if it's, even if it's through Zoom, man, you can't replace that. You can't replace it, Yeah. Mike, I thoroughly enjoyed our talk. I can't wait to work on projects together. I can see a few things happening here. Do you have any final words my friend, that you would like to talk tell the stroke survivor community? Here is the one thing that I will say that I stand by. You're not in this alone.

34:34 Understand that there is somebody out there that wants to listen, help, answer questions, whatever it is, don't hesitate to reach out. If I could slap my e-mail and phone number for anybody and everybody to see. And if they have something, you know, we all have to stick together. Nobody is alone.

35:11 But also give yourself a break. Give yourself a break. If your brain is telling you take a break, take the break. Don't push too far. I love that that high 5, high 5 dude, high 5. Every time, man, Absolutely. I love that air. I think that's a perfect way to end Mike. That is like, wow, check it out guys. You're surely gonna see Mike again here on stroke Surviving the Odds, the podcast.

35:46 But for today, I want to remind you that you can listen to it on Spotify, iTunes, Apple and all that good stuff. Make sure you like, follow and share with Sugar Bear. The more the algorithm knows, the more the community of stroke survivors don't feel alone, they feel heard. Let me be your voice. Let might be your voice.

36:13 Now remember when you're on YouTube, ring that bell guys. It is very important. That way you're subscribing again, it's free. If it's free, it's for me. You are subscribing and you're not missing any of my amazing, amazing guests and I have a couple. I have one thing to say. Where do you live, Mike?

36:38 I am right outside the Poke Poconos in Pennsylvania. Wow. OK. Well, Pennsylvania is Pennsylvania. Pennsylvania, yes. Pennsylvania. OK, I'm in Canada, that's why. OK, well I have good news. I received news this week that the podcast has made it to the top 10 most influential podcast in the US. So so. I mean, you're part of it, man.

37:14 All of you that are listening and viewing, you are part of this. And I you know the list of the 20 most popular podcasts in the States for stroke survivors. This podcast is numero Uno. Oh that is awesome. So, so I mean, what you're talking about today is going to hit a lot of people, a lot of people in the US and a lot of people worldwide because we are top 4 worldwide.

37:49 So this message of yours is going around the world, baby. I love it. Wow, I'm so thank you, blessed, thank you. You are amazing and I love. It and. Wow, absolutely amazing. Thank you. Great. Thank you. Thank you. So that being said, guys, I have to share my little bit of good news with you guys. I love you immensely and I'm going to see you soon, OK? We love you.