S11E15: FINDING PURPOSE IN YOUR CHALLANGES. ( guest, Nicholas Kelly)

Hello, my beautiful stroke survivors. How are you? This is Karina from Stroke Surviving the odds. If you're watching this, you are probably seeing it on YouTube. So the mission of this show is particularly to help stroke survivors and survivors of the world reclaim their lives, reclaim their identities.

Very important. And today's guest is going to amplify the meaning of all this. Today's guest, I have to read this. Today's guest has an approach. He's a certified dietitian and he has this approach where nutrition can definitely help in the healing and in the recovery of your mind, body, and soul where everything works.

From infancy, he knows everything about adversity because from infancy he suffered from cystic fibrosis and he's had to adapt. He's had to adapt like all of you stroke survivors. So another thing that is amazing about Nicholas is that he did a TE DX talk that is excellent and he spoke to the FDA in advocacy, I'm guessing for drugs and whatnot. And he believes, like me, that communication is the biggest form and what use is information without transformation. So without further ado, I would love to introduce you to Nicholas today.

Hello. Hello. How is everyone doing? I appreciate you having me. I'm excited for today. Likewise, likewise, I saw a lot of similarities in our survival stories and I just knew that you had to be here, you had to be here. So I love to start the show with you as a man. I'd love you to introduce yourself before we get into the meat and potatoes of all this seriousness of life.

I'd love to hear about you. So a little bit about myself. I am 39 year old male living with cystic fibrosis. I am Cleveland born and raised. So Cle stand up I have I've been a mediatitian. I'm a professional speaker, but I'm also an author. I'm an artist, so I was a professional dancer for 12 years.

I do poetry, I DJ, so I'm really big into the arts. That's one of my biggest passions. I was diagnosed as systole. I broke that three months. The interesting thing about that is it was actually my mother who diagnosed me because 39 years ago, they didn't think African Americans did have the disease. So no one would test me for it.

So it's actually my mom who learned the symptoms that she diagnosed me. So that's an interesting part of my story. So I, I'm a person who loves to travel. I've been to 646, excuse me, 46 of the 50 states so far. So I, I'm a person who just loves life and is passionate about it. And I'm excited to learn for people to learn more about me.

Wow, wow, wow, what a beautiful beginning. You're you're a beautiful man. Shit, man, You're really, really beautiful man. And I can see that you're extremely creative. Oh my God, you do all this stuff. That's amazing. What's your favorite from all of them, even though they're it's your passion? So it's either poetry is my biggest like non professional passion and then speaking is my biggest professional passion. Love that, love that very much growing up, did you? I'm talking about your teens and up, OK, maybe in your 20s and up.

Do you find that cystic being, having cystic fibrosis all your life, being an African American has made you stronger and having a will to survive even more? I think a combination of things has helped my will. You know, being CIS fibrosis is definitely, it's not who I am, but it's a part of my story.

So that's a huge thing. Just, you know, outliving all the expectations. You know, I wasn't supposed to make it to 1. I wasn't must make it to 257, you know, all the way up to 16. And after that, after that they just start, they stop counting me out. So I, you know, all these things. When I was 5, I had open heart surgery.

So, and I spent six months in the hospital. So I had COVID 3 times. The first one I spent 67 days in the hospital. So I I have experienced life in a bunch of different challenges, but I think that for me has just made me stronger. I see that for our listeners and our viewers that are not familiar with cystic fibrosis and my stuff, I'd like to know a little bit more.

Can you in a nutshell explain what cystic fibrosis is? Yes. So in a nutshell, it is a genetic disease that affects the lungs, pancreas and GI system. What they don't tell you when you sign up for this disease, it affects everything else. So what happens is this thick, sticky mucus builds up in the body.

Specifically, when it builds up in the lungs, it attracts bacteria. That bacteria causes infection. Those infections eventually called scarring, which decreases your lung function, which honestly, is terminal, which is terminal because there's no cure. OK wow, wow, wow. OK, so could that that that's probably why you had COVID 3 times and you had a very long hospital stay? Yes, because you know, you combine two things that affect the lungs and the body and then you have a perfect store. And you just said that you had open heart surgery. At five years old, yes I did.

Holy shit man, so so open heart is one thing and cystic fibrosis is another. Or they're related. No CF is one thing and the open heart surgery was another. Oh my God. Well then you are a badass. You are. Appreciate it. Absolutely. Wow. I am honored to meet you, see you. And for my listeners and viewers, I mean, I say mine, but in reality it's ours because there's no I in team, right?

And no I in team. There's no IN team. No, Sir. Bob, Wow. Now I have an important question. You said your mom diagnosed you because 39 years ago it did. I hear correctly they did not think and they did not want to test you for cystic fibrosis. That's correct. Wow. OK, so check this out. Check this out because this is a conversation, right?

So I'm not Barbara Walters, I'm not Oprah Winfrey. I, I anchor into you, into your story, into your teaching for us today. And I listen, I listen with the heart and with my ears. Now, 39 years ago, your mom diagnosed you because they didn't think an African American child would have that right. So growing up knowing that, knowing that racial profiling, how has that affected your recovery and your adaptation? I think it was hard for me to understand early, but later in life I started to realize that I was a minority in multifacets. I'm already a minority as being an African American. I have a minority, you know, disease, and inside of that disease I'm a minority.

And I'm also another minority inside of the disease because I have a rare mutation. So I'm just a multi time minority. So it it affects me in different ways and I'm able to see that. But it's part of the reason I advocate for people who look like me with this disease or people who don't look like me that are minorities with this disease. Absolutely.

Thank you. Thank you for being there for for those people. Does that sound bad? Does that sound racist? I mean, it must not be. I, I, I, I, I have so much compassion for what you went through. And I don't like to talk about the color of the skin, but in this case, it's a huge factor in this young boy's life. And I'm sorry.

I'm so sorry you have like, I want to cry. I'm so sorry you had to go through that. So we're going to shift. We're going to shift all that. I'm going to give you the floor because you're I know TEDx, you're you're you're one of the great ones. So I'm going to give you the floor. OK, OK. And I'm going to collect myself and tell us a little bit about you professionally.

So professionally I am a registered licensed dietitian with my Masters of Food and Nutrition. I have worked in pretty much all nutrition areas. My favorite is sports nutrition. Big part of that is because I was an athlete and I can resonate and I just love sports. I'm a big sports fanatic. So being able to help people accomplish their goals and help them reach that through nutrition has always been really cool to me.

And then I also have a cookbook out at, you know, as a dietitian. So I have a cookbook. It's called No Need for Seconds. It's called No Need for seconds. It's a high. Calorie comfort. Being Amazon or my website which is Nicholas kellyrd.com. OK, You're going to give me all that and we're going to put it on all the advertisement we're going to do, OK.

OK, so so I'm that I'm also author to children's books. So I have three children's books, which are the inventions of Miss Messi, Susie Magoo, and those talk about a little girl with CF who navigates through the world learning different therapies. But it's colorful, it's bright. So anybody can any kid can learn from it and have excitement around it. So that's the three books over that. And so and then you switch over to, I'm a public speaker, so I have travelled the country doing different talks. I love speaking to people.

It's one of my biggest passions because I love sharing my knowledge and expertise. What I'm getting from what you're saying so far is that you are grateful. Very grateful. And you're non judgmental? Also true. And I'm getting that you are adaptable and generous. Those are those are good. I'm a little bit of crazy. I appreciate you adding the creative part. I'm just a little bit crazy.

Really. I'm, I'm amazed. I'm so, so amazed. Yeah, go on. And so for me, it's just one of those things, especially that I'm always trying to strive to be better. And that is in my professional and personal life, I'm always striving to be better. I'm always striving for the next step. I'm always striving for what's next. I see that, I see that.

Do you feel like you have a need to be so busy and productive or when do you sleep by the way? I, I work, you know, in spurts. So I get sleep in spurts. I, I work in spurts and I just, I'm always looking for my next thing. So, you know, in a bunch of ways, like I want to stay busy. I want to find my next project and, and work through that.

What's my next project? What's the next thing I can accomplish? OK, makes sense. Do you feel that you've had to overcompensate over over the span of your life when you tell us all about that, your accomplishments and what you're doing, do you feel you had you felt like you had to overcompensate?

I don't know if I would say I felt I had to overcompensate, but I do feel like I've challenged myself to be better than I was the day before and to be better than I can be next day. So I I've challenged myself with the rigors that it takes to be great, the rigors for success. I think that's very well answered.

That is very well answered. So you said that you love your professional passion is public speaking. So when you did your TEDx talk, what was it about? Hearing through the human experience is what it's called. And so pretty much it's all about communication at different levels. And I use my experience as a a patient. I call myself a professional patient with clinical training. So I use my experience as a patient to help guide the communication aspect of the text. OK.

OK. And can we expand a little bit because I have a feeling this particular subject topic would be pertinent to stroke surviving the odds. Would would you be OK with that? Yeah. So it really kind of talks about how understanding how we can bridge that gap between clinician and patient by using communication as a, a tool or a Ave. for the vehicle.

So I talk about like my different experiences I've had all the way from starting my diagnosis as well as I've been called a hypochondriac. So I go into that story. I go into the story about how I got diabetes and how the clinician was not helpful in there. So I talk about a lot of stories where I there was a lot of pitfalls that could have been better and how those how the communication could have been improved.

So ultimately improves my patient outcome and my patient satisfaction. I get a lot of that question. A lot of people say they feel like they're. I'm saying a lot of people, as in my survival community, OK, say that when they talk to a doctor, they don't feel like you say that communication, that they don't feel connected, they don't feel listened to. What would you tell a patient between brackets that is a way to communicate?

What should they communicate? Communicate your needs and your expectations. You know people. At the end of the day, clinicians are just people. Sometimes you'll, you'll jive with them, sometimes you won't. But it's they, they're there to help you with your health. So it's important that you understand that, you know, no one wants to be in the back seat of their own health.

You got to take the driver's seat because no one's going to care about your health more than you do. And I think it's really important for people to understand like it's on you. It's on you to take the wheel and and force the kind of care you need. I'm taking notes. I'm always telling my community that they are their best advocate.

And sometimes, and that's basically what you just said, that you have to say your needs, you have to say what it is. Now, can you give us an example? Because some people are, they feel like they don't have a say because in life it might be a little difficult to share. They feel not listened to or whatnot. So when they get to the doctor, they take everything the doctor says.

Can you give an example of maybe something nice, polite, but give me what I want, you know what I mean? Yeah. So one of the, I can give you an example, and this is using a strategy and saying, OK, understand that I'm in this position and I need you to understand the position I'm in so we can navigate how to get out of this position. So that's a good way to just say it because you're, you're being direct, but you're understood letting them understand like this is your current situation.

So the position I'm in. So for me, I could say my current position is that I'm having chest pain consistently. I need to do something to relieve this chest pain. And then you can go into the conversation and they can talk about it. Another example is try to use objective data instead of subjective.

So using things that would say I've been in pain at a 7 out of 10 for five days in my lower abdomen or in my stomach region, because that gives me a timeline and gives me a scale that I can judge off of. So that objective data is what a lot of clinicians want and need because they feel that helps them diagnose. So trying to form subjective data into objective data, subjective data into objective data as well. Yeah, yeah, I get it.

I love, love that. I think I'm going to reinforce that. I think that it's something that the survivors would definitely learn because I'm finding even that's my way of teaching also, that when you do A, you get this result, but when you do B, you get a better result. So I love, I love the example that you just gave us right now.

Now when it comes to reclaiming confidence, because stroke is not just physical, stroke is emotional and psychological and mental health is a very big issue in this. So when it comes to reclining confidence and you have to get all those 3 aligned, how would you go about it? With small steps is the first thing is taking small stuff that you call them small victories. Finding small victories in the sometimes the daily life, sometimes it's in the mundane, sometimes it's in a a big goal. But taking small victories and allowing those to be your guiding force in the game, your confidence back. Like for example, in a stroke survivor saying OK today I was able to, I was able to walk 10 feet instead of before I was able to walk 5.

You know so to. Reinforce instead before. So I love that. So today I was able to walk 10 feet versus last week when I could only walk 5. So it's to me. And do you believe that by verbally saying it, our brains subconsciously gets it? I do. I believe when you sometimes you have to recognize your victories.

You know, for me, I've always been someone who doesn't stop and smell the roses, if you will. I, I'm kind of just go, go, go. But I also had to learn when during my times of being sick of I had to take stock and saying, OK, I know this is rough. I know this is tough. But today I was able to do the thing I didn't do yesterday or tomorrow. I'm looking forward to doing something new. So you have to take these victories and you have to take solace and the the small wins and that'll help regain your confidence.

Oh, OK, you said something interesting. You said I have a hard time smelling the roses. At least you acknowledge that. But do you find that you still have a hard time smelling the roses? I do, I know I do. It's one of my, it's a flaw I have and I do everything I can to try to celebrate my wins and do so. But I also am always thinking about, OK, I'm celebrating this wing, but how long do I get to celebrate it before I say, OK, what's on the next project?

And sometimes that has gotten me in trouble because I finished the project and I moved on to the next project so fast. I didn't do anything with my first project. So I it's a balance that I've had to learn and and continue to to work towards. I love that. I love that you're acknowledging it and I, I'm sorry, I'm big on that, but it's important to take a step back.

So I'm sure that after today's interview, you are going to remind yourself to celebrate those little victories. Maybe give yourself not 5 minutes, but maybe a day. Maybe a day. 24 hours. I know for you it would be extremely hard because you're always go, go, go, go. But I think that if or even just doing something for you, it would be a beginning, right? Even if you did, you bought yourself a pair of Nikes that you've been eyeing for the longest time. And today is the day.

And every time you're going to be wearing those shoes, you're going to be, oh, yeah, I got those because I did this. So you're, you're going to be reminding yourself of those, the feeling even momentarily of that little victory that that, that it takes a big man to acknowledge that man. And how would you? Now I'm going to ask you not for you, but but to tell our audience, how would you go about celebrating? What would you do?

Well, what are examples? So one of the examples is like you said, shop therapy, buy yourself something that you've always wanted or that you were been eyeing or something like that. Taking yourself on a trip or taking yourself on a day out, giving yourself a day like those kind of things. Or even just celebrating the winds with your friends saying, OK, this is to me, cheers to me, you know, holding, holding a book release.

If you do a book, you know, if you celebrate the winds of The Walking, for example, you know, being able to tell your friends, call them up and accelerate and allow yourself to be excited about it. Allow yourself to be excited about it. A lot of people feel guilty about that, and I'm glad you bring it up.

A lot of people feel guilty about even being here. That and that that's a that's a tough thing. That's a tough thing to get over, but that's also when you want to, you know that survivors guilt and things is very real and I understand that and it's something I've I've struggled with as well. So, but you try to find the reason that you're here and saying you're still here because you have a purpose to complete, whether that purpose be something for someone you know else.

So whatever that purpose might be, you have a purpose, you have a purpose to be here and that will indicate through your passion. That's a very another common question that I get is I can't find my purpose anymore because before they identified the example, a woman identified herself as the mother and the wife, OK, before everything else. And now she finds herself in a wheelchair and she has all all of these health problems and she thinks that she's less of a mom and less of a wife because her physical and cognitive aspect changed.

And what you're saying is that it doesn't change. It's hard, but it does not change. Yeah, that's what I say. So the way I look at it is passion. Finding passion utilizes purpose to increase productivity. And what I mean by that is finding your passion. So in her case, her passion is actually caring and loving. That's her passion.

Her purpose is showing that. So she shows that by showing up for them, getting baking fit for them, being able to show up for them, that's her purpose. So purpose is merely the external display of passion. So finding what your true passion is really helps showcase your purpose. That's all purposes to me. It showcases passion.

So when someone says I've lost my purpose, no you didn't. You just don't know how to how to display your passion. So fine, you really what you're needing is define your passion again. I love that. I absolutely love that, Nicholas. That is I, I, I love this interview because we're going back and forth and I feel like it's not an interview, It's a conversation. You know, I'm here with my glass of water and I know you have something on your side.

So I'm thoroughly enjoying this conversation and you're more than I invite you to come to come back any, any time. I try to keep the episode at roughly 3035 minutes, OK, because I don't want to be overbearing. I don't want us to be overbearing. But I have a feeling you have a lot more stuff to tell us.

And one of the questions that I'm going to have for you, I'm telling you now, one of the questions I'll I, I'll have for you is what have you done? Smell. The roses So I held a book release for my cookbook, which was something that I normally wouldn't do, but I doubled it up with my birthday because I, I still felt a little weird just having a cookbook release. It took me so long to finish that. So it was like, I deserve to celebrate this. So I, I launched, I had a book release, I invited my people, I had a DJI did poetry there all, all the things to that way. I got to celebrate that.

I showed my clothing line, so I did. I multipackaged all this work and wow. Wow. Wow, you have a clothing line? Yeah, so I do, I have hats that I go through with my logo on them. They're they're very nice. So I, I launched, I showcased those. So I just got to showcase the different versions of my passion. I think I think that that was great, you know, and it's the second time actually today that you mentioned your your book release you and I love that you incorporated each and everything that you do that you're passionate about. So that is awesome.

So I definitely, definitely would love to have you again, Nicholas, and see where you're at. And I can't wait to get those links for your children's book, your cookbook, and your hat because I there's a lot of hat wearers out there. OK, so any final word that you have for our community of survivors?

So first, if anyone wants to reach out to me, it's at nicholaskellyrd.com. My socials are on Nicholas Kelly Rd. and that's KEOOYR as in registered D, as in dietitian. My e-mail is nicholaskellyrd@gmail.com. So if you if you're not getting the pattern, the way to get a hold of Nick is Nicholas Kelly Rd.

That's how you find Nick. And I always want to tell people the biggest thing and the most important thing a person can have is passion. Passion is what drives you. And if you allow your passion to be the driving force for you, you'll find things that will allow you to be great and your success will build. What a beautiful testimony and in in, in in the way to end our show.

Thank you, Nicholas. I really, really, really enjoyed this. It was great. I only wish for you more success if it's possible. If it's possible, guys, this is what we have for you today. I hope you enjoyed our guests. You know that you can like, follow and subscribe on Spotify, iTunes, Apple and Google Podcast. And I'm always suggesting that you share with Sugar Bear. You share with the community, with the people. It's not your job to know who to share to. Your job is to share.

Their job is to accept or decline. That's it. And if you are watching this or rather when you will be watching this on YouTube, well, guess what? Ring the bell guys, it's free. If it's free, it's for me. Ring the bell. It's going to help me, the community to expand our reach because apparently YouTube has a limit, a minimum limit that you need before going live. And I want to go live.

So that being said guys, I love you immensely and I will see you soon. Bye. Thank you for having me. Bye bye.

S11E15: FINDING PURPOSE IN YOUR CHALLANGES. ( guest, Nicholas Kelly)

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