About me

My Story

You may be asking why I wanted to write this book. Please allow me to take a few moments of your time and try to share why writing this book was so important to me, and why I have reached out to you and asked you to share your experiences. After all, this book is about sharing what it is like from a patient’s perspective to live with a chronic disease. This book is to share what life is like living with Alport’s Syndrome (AS), Chronic Kidney Disease (CKD) and/or End-Stage Renal Disease and dialysis.

As someone who has walked through over 2 decades of illness (i.e. Alport’s Syndrome and End-Stage Renal Disease), I understand and empathize with every frustration that my intentional reader may have concerning treatments—and I have some great insights into healing, which I want to share in this book. I want to see people healthy in mind, body, and spirit. I want to share that to be well, one must eliminate not only the infections, but also their unhealthy beliefs and thought patterns, hectic lifestyle, and a dozen other psycho-spiritual issues that contribute to the breakdown of our bodies.

 

Jeff A. Parke

A brief biography of Jeff Parke

This project is meant to motivate and inspire.  Not only can readers learn from my experiences, but I can touch them emotionally or even spiritually. I wanted to take on this endeavor because I have an innate need to write about life with these illnesses. For me, it is like breaking the chains that have held me back for so many years.  I wrote this book to make peace with the things I cannot control. I wanted to write this to meet my ghosts.

I wanted to write this book to leave a legacy; to journal the experiences I have had and hope my stories will help someone else. I wanted to make a home for oneself, on paper, in time, in others’ minds.

The psychiatrist Victor Frankl posited that the main search of mankind is not happiness or pleasure but meaning. “Life is never made unbearable by circumstances, but only by lack of meaning and purpose,” he wrote in Man’s Search for Meaning. I wanted to discover meaning for my life and writing this book will help me achieve that goal. By finding meaning for myself, I hope readers will find meaning for themselves. Taking on this project has taught me that every story matters to the person living it, and our job is to tell the universal stories, the stories that reveal the story of every person on the earth. I want to bring meaning to the world of the patient who is forced to manage Alport’s Syndrome (AS), Chronic Kidney Disease (CKD) and/or End-Stage Renal Disease (ESRD). This book is for us – for the warriors.

This project has humbled me. It was a difficult project as it made me see things in myself that I did not know were there. I hope my words will also humble the reader and help them become more self-aware and inspire them to make their own impact on the world.

For years I struggled with clinical depression. And starting to journal years ago about my setbacks, my illnesses, my life, I managed to climb out of that dark hole of depression, and I now have this insatiable need to help others do the same. I am an introverted person. I retreat inside myself and writing this book has made me feel like I can help make the world right. I want this book and the knowledge that the patients, the nurses, the editors, the filmmakers, the nurses, and the doctors have shared to liberate those who read this book from and help them learn to not just survive but thrive.

Sometimes I feel that my life, my words, look better on paper and hence the purpose of this book.

 

You are not alone 🙂

Talk By Jeff Parke Video

For all of those who know what it is like to manage an illness. The one thing I have learned through my illness is not to be ashamed of who you are. You did NOT choose to be sick but you are sick and you need to deal with it. There is a lot of pain, sadness, guilt, desperation, but we are strong enough to get through. You are the warriors. We are not different we are unique and know how to teach someone how to truly live. I wrote this “Letter to My Illness” for those who know illness firsthand. I hope you learn something.

Well, actually, I don’t know what to call you. I could call you “Chronic Kidney Disease, CKD, ESRD, Renal Disease” but that’s just your first name. I’m still trying to find out what your last name is and how many middle names you have. My kidneys weren’t enough for you, so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge, and you make being alive more complicated than it should be. I can’t sleep, I have RLS and I twitch all of the time, and so much more because of you,.So I need to undergo a treatment called hemodialysis. Essentially, I have all my blood sucked from my body, sent through a filter, and all put back into my body in 3-4 short hours, lacking many necessary minerals my body needs to thrive. My bones are brittle, my joints ache, I have bad headaches, my skin itches and I am nauseated all of the time. I take medications to help my body do the things it’s lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the same goals I’ve had to set aside.

But thanks to you, I’ve made some new friends. I’ve met so many wonderful people. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They’ve given me unconditional support, and I’ve learned how to offer that support in return.

I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections, and you’ve given us a lot of opportunities to be there for each other when we’re most vulnerable, which is also when we’re most honest when the knots are tied the tightest. Throughout the past five years, I’ve never felt more discouraged, frustrated, tired, and lost, but I’ve also never felt more loved. I know that’s because of you. You’ve caused me a lot of hurt. I grieve my old, normal all the time. I grieve me who was always on the go.

My new normal is different. The new me is quieter but wiser. More tired but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. He’s slower to judge and quicker to empathize. He knows how to ask for help, and he keeps going no matter what. And you know what? I like him, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me, but you’ve made me more grateful. How is that possible? It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and success in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is — I get to choose what I see. And if I look for the good, I know I will find it

You taught me that.

Hold life close as it can be gone in an instant. Cherish the life you have been given – some of us suffer for you.

________________________________________________

I am not the NY Times Best Seller List or among the top 100 sellers on Amazon…yet. But I plan on getting there.

I am practical, modest, humble, and love to share my wisdom.

I WRITE TO LEAVE A LEGACY – But there’s really only one good reason to write a book: because you can’t stand not to write it.

When have you felt the deepest sense of satisfaction as a writer–that moment when you experienced the buzz of “Yes! I did it” … “I got there” … “It happened!”

While the end-product for writers is the same–a piece of published writing–our individual motivations for writing are very different. Our sense of achievement is triggered by different aspects. Identifying what most satisfies us about writing helps us find the right support and to understand what holds us back. I am focused on getting a response from readers and inspiring change.

I was born and raised in Ithaca, NY, a small city in the beautiful Finger Lakes Region of Central NY. If you love waterfalls and snow, then this is the place for you. After graduating from Duquesne University, I lived in Raleigh, NC, where I spent a good part of my life. Now I permanently find myself living with my perpetually understanding family, which does include a family of felines, in Lakewood Ranch, Florida. While I am not working full time in clinical research, I am glued to my laptop, writing, and learning everything I can about the human spirit, faith, and spirituality.

I try to live life forward, even though you can only understand it backward. I love to travel when I have the time. My wife and I take short jaunts to the beach and in that, we often find a lot of peace and tranquility. I am open to just about any adventure, and even a whole lot of situations (or conversations) that most people would consider boring. I have been known to do what some would call stupid, but I am an adrenaline junkie and have a burning need to explore and push limits. I’m fascinated by the concepts of happiness, memory, loss, death, regret, settling, staying put, art, beginnings, and endings. Three things very important to me: compassion, service, and independence. I seek environments exhibiting these values. I appreciate people who don’t take themselves too seriously. I am an unashamed Zen-inspired intellectual who cares about joy and beauty, in a broad sense. I’m occasionally even fun to be around

 

You are not alone 🙂

Talk By Jeff Parke Video

For all of those who know what it is like to manage an illness. The one thing I have learned through my illness is not to be ashamed of who you are. You did NOT choose to be sick but you are sick and you need to deal with it. There is a lot of pain, sadness, guilt, desperation, but we are strong enough to get through. You are the warriors. We are not different we are unique and know how to teach someone how to truly live. I wrote this “Letter to My Illness” for those who know illness firsthand. I hope you learn something.

Well, actually, I don’t know what to call you. I could call you “Chronic Kidney Disease, CKD, ESRD, Renal Disease” but that’s just your first name. I’m still trying to find out what your last name is and how many middle names you have. My kidneys weren’t enough for you, so you’ve taken up residence in other parts of my body as well. You don’t have an official name yet.

But name or no name, the struggle is the same. You make every day a challenge, and you make being alive more complicated than it should be. I can’t sleep, I have RLS and I twitch all of the time, and so much more because of you,.So I need to undergo a treatment called hemodialysis. Essentially, I have all my blood sucked from my body, sent through a filter, and all put back into my body in 3-4 short hours, lacking many necessary minerals my body needs to thrive. My bones are brittle, my joints ache, I have bad headaches, my skin itches and I am nauseated all of the time. I take medications to help my body do the things it’s lost the ability to do on its own since you showed up.

There are so many things I hate about you. I hate that you make me doubt myself and doubt my instincts. I hate that nothing in my life can be spontaneous. I hate that I can’t just have fun without paying you for it. And I hate that no matter how hard I try, no matter how carefully I track you and no matter how conscientious I am, you still surprise me, exhaust me and leave me confused on a daily basis. Thanks to you I spend more time with my doctors than I do with my friends. And thanks to you I watch those friends move on without me and achieve the same goals I’ve had to set aside.

But thanks to you, I’ve made some new friends. I’ve met so many wonderful people. Doctors and nurses, yes, but also fellow patients and kindred spirits. I’ve learned that shared experiences can bring people together in a way that overcomes the geographical barriers keeping them apart. I’ve been lucky enough to find my tribe. They’ve given me unconditional support, and I’ve learned how to offer that support in return.

I kind of hate what you’ve done to my family. I hate the stress, the worry and the helplessness they feel. You haven’t just taken away my freedom; you’ve taken away some of theirs, too. But on the other hand, what you’ve done to my family is kind of beautiful. You’ve strengthened our connections, and you’ve given us a lot of opportunities to be there for each other when we’re most vulnerable, which is also when we’re most honest when the knots are tied the tightest. Throughout the past five years, I’ve never felt more discouraged, frustrated, tired, and lost, but I’ve also never felt more loved. I know that’s because of you. You’ve caused me a lot of hurt. I grieve my old, normal all the time. I grieve me who was always on the go.

My new normal is different. The new me is quieter but wiser. More tired but more patient. The new me is better at giving others the benefit of the doubt and has a better awareness of the fact that everyone is going through something. He’s slower to judge and quicker to empathize. He knows how to ask for help, and he keeps going no matter what. And you know what? I like him, too. I miss the old me, and that hurts, but I like the new me, and that heals.

So how can that be? It doesn’t make sense that you can hurt me and help me, that I can hate you and appreciate you. There are more challenges in my life now, but there is also more joy. You’ve taken a lot from me, but you’ve made me more grateful. How is that possible? It’s possible because of what you’ve shown me: that there are two sides to every story. There are triumphs in every hardship and success in every failure. There is good in everyone and everything, just as there is bad, too.

The thing is — I get to choose what I see. And if I look for the good, I know I will find it

You taught me that.

Hold life close as it can be gone in an instant. Cherish the life you have been given – some of us suffer for you.

________________________________________________

I am not the NY Times Best Seller List or among the top 100 sellers on Amazon…yet. But I plan on getting there.

I am practical, modest, humble, and love to share my wisdom.

I WRITE TO LEAVE A LEGACY – But there’s really only one good reason to write a book: because you can’t stand not to write it.

When have you felt the deepest sense of satisfaction as a writer–that moment when you experienced the buzz of “Yes! I did it” … “I got there” … “It happened!”

While the end-product for writers is the same–a piece of published writing–our individual motivations for writing are very different. Our sense of achievement is triggered by different aspects. Identifying what most satisfies us about writing helps us find the right support and to understand what holds us back. I am focused on getting a response from readers and inspiring change.

I was born and raised in Ithaca, NY, a small city in the beautiful Finger Lakes Region of Central NY. If you love waterfalls and snow, then this is the place for you. After graduating from Duquesne University, I lived in Raleigh, NC, where I spent a good part of my life. Now I permanently find myself living with my perpetually understanding family, which does include a family of felines, in Lakewood Ranch, Florida. While I am not working full time in clinical research, I am glued to my laptop, writing, and learning everything I can about the human spirit, faith, and spirituality.

I try to live life forward, even though you can only understand it backward. I love to travel when I have the time. My wife and I take short jaunts to the beach and in that, we often find a lot of peace and tranquility. I am open to just about any adventure, and even a whole lot of situations (or conversations) that most people would consider boring. I have been known to do what some would call stupid, but I am an adrenaline junkie and have a burning need to explore and push limits. I’m fascinated by the concepts of happiness, memory, loss, death, regret, settling, staying put, art, beginnings, and endings. Three things very important to me: compassion, service, and independence. I seek environments exhibiting these values. I appreciate people who don’t take themselves too seriously. I am an unashamed Zen-inspired intellectual who cares about joy and beauty, in a broad sense. I’m occasionally even fun to be around

 

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