How Do You Do What You Do?   

        Interview with Zachary Lewis, aka the Burly Man   

   

Sometimes sitting down is the hardest thing to do. Sitting means you are down. Closer, to the ground, further from up there where people run and walk.

Where people still can. 

And sitting, that’s where the old people are. See them down there, as far away from you as you could make them. They are there. Your people now. The sick, the invalid. The ones with Velcro pants and elastic waistbands.

Do you remember a day like this? It’s been my reality for the last fifteen years. Like most people this wasn’t suppose to happen to me. I was only twenty six. An athlete. Someone who did what you were supposed to do. But like John Lennon said, life is what happens when you’re busy making other plans.

For Zachary Edward Lewis, aka,“The Burly Man” his time came on June 17th, of 2009, when he had his first of many ER Visits to the hospital. Eight months later on February 12th, 2010, he was diagnosed with Polymyositis, and on August 25th, 2010, Lupus.

Bam! Welcome to your forties.

Wow. What’s that’s you say, polywog ate what?

Polymyositis (PM) a fancy doctor word for a chronic inflammatory autoimmune disease known as overall as Myositis. There are several types of this disease that affect different parts of the body. PM is found mostly in people over the age of 20 and affects mainly the muscles. Muscle weakness usually happens over days, weeks or months and begins in the neck, hip, back and shoulders. Some PM patients experience muscle pain, breathing problems, and trouble swallowing. There are no known cures and the only medications they have suppress the symptoms and in some cases, cause more problems than they solve.

Lupus is another chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. Like myositis and most other autoimmune diseases, there is no known cures and the drugs are the same.

So what do you with that?

We are a quick society. Our patience limited to grumpy cat photos on the Internet. How can we have time for two things that take all of your time? And I mean all your time. Did you get out of chair, walk to the door and skip down the front steps to your car, hop in and drive away in less than a minute?

Try fifteen, twenty. And that’s after it took you an hour to shower and dress. That is if you are one of the lucky ones. The ones that still can.

Well the Burly Man hasn’t taken this lying down. He has drawn on his past experiences and created something amazing. While suffering from two diseases he has written two books, a third is coming out soon and started his own publishing company, WEISHENDO Publications.  Cold Waters Press wanted to find out how he does what he does, so I conducted the following interview via email, the internet, the place that has allowed us all connect. In the dark days we suffered alone. now we have online support groups, which how I met Mr. Lewis. You can find out more about his publishing company at http://www.weishendopublications.com   you can also watch some of his videos on youtube at http://www.youtube.com/polymyositis  

You can also find out more about these diseases at the following links. http://www.myositis.org and Lupus at http://www.lupus.org/newsite/index.html   

Questions for Burly Man

1. A lot of people are not familiar with the nature of auto immune diseases, you happen to be someone who has a couple at the same time, can you tell us a little bit about these? 

        I was diagnosed with Polymyositis on February 12, 2010. I was diagnosed with Lupus on August 25, 2010.  Both diseases are incurable. Polymyositis is an Autoimmune Disease where the immune system attacks and destroys healthy muscle tissue. The primary job of the immune system is to protect the body from bacteria, viruses, toxins, cancer cells, germs, and etcetera. In short, your muscles, and connective tissue are attacked by your immune system 24 hrs. a day. Some of the symptoms are muscle pain, fatigue, chronic pain, and inflammation to name a few. Lupus is an autoimmune disease that affects every major organ of the human body. With it you have a variety of symptoms to deal with. You are sensitive to sunlight on your skin, and eyes. You have muscle pain, skin rashes or Malar Rash on the bridge of nose. Other common symptoms are, fatigue, joint pain, inflammation, swelling, lung problems, etc.... etc.... Because of the symptoms involved with autoimmune diseases, they can be misdiagnosed, or easily mistaken for something else. I was fortunate to have been diagnosed in eight months.

2. Since there are no known cures, what sort of things are you doing to help heal?

        After finding out how both diseases would affect me, I came up with a daily diet, and exercise plan. The diet plan would allow me to lose the extra weight I gained from being immobile for so many months, and slowly rebuild my body so it could fight back against both diseases. The exercise plan would allow me to regain my strength, and flexibility. I went from 215lbs. to 256lbs. in a matter of months. This was also due to a medication called Prednisone. Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug. It also has the ability to make you gain weight.  After being on this drug for over a year, I decided to taper off of it, and lose weight. With continued use of the drug I was in danger of harmful side effects that could be permanent. With the success of my diet and exercise plan In the last two years, I have dropped all but one medication, and lost the weight I gained. I might add that I lost all the weight I gained while still taking prednisone. I quit taking it shortly after. I hope to be off all drugs, and medications by the end of the year. My current weight is 185 pounds, and my current health has improved due in part to my holistic approach to healing myself. 

3. You have written a book about your experiences, how did you manage to write, produce and promote a book while also struggling with illness?

        The book itself started out as a daily journal that I used to record the events that were happening in my life, from June 17, 2009 to June of 2010. I wanted to keep track of everything, so I could possibly find answers to what was going on. The end result was a book that could give people an in-depth look, at what it’s like to live with a chronic incurable disease day to day.  The name of the book is called “The Burly Man”, which was titled after myself. After writing The Burly Man I decided to promote, and produce the book on my own. Through Facebook, Youtube, and other multimedia plate forms, I was able to share with people my triumphs, and defeats. This way I could share with people at my own pace, and still concentrate on my health concerns. It has been a constant struggle to maintain everything on a daily basis physically. The satisfaction that it brings me to help others has been a healing tool within itself. 

4. Can you tell us a little bit about starting your own publishing company? What are some of the things that brought this about; did you try the traditional route, agent, publisher…?   

        I never intended on starting my own publishing company. It was something that came out of necessity. When I first found out how both diseases would affect me, I researched both illnesses on my own. The stumbling block was trying to find information that could give me an accurate description of what my life would be like. Sadly there was nothing out there that could accurately explain what it would be like day to day. So I produced, and published The Burly Man. In the beginning I did approached a few publishing companies, but it was a waste of time. None of them saw a need for such a book. So I decided to form Weishendo Publications, so people like you, and I could find helpful information on autoimmune diseases.

        In Chinese WEI-SHEN-DO means, the way of the active spirit. I had previously written a book called “The Principles & Philosophy of WEISHENDO”. It was based on my own outlook on life, and how to adapt, change, assimilate, and transcend. It was these principles that also help to form Weishendo Publications. I adapted everything I learned in life, changed and assimilated it until I was able to transcend it at will.

5. One of the things I admire most about you is that you are a tireless advocate, not only for yourself, but also for seemingly anyone who needs it. Does advocating for others give you strength and energy to keep up your own struggle?

        Yes it does. I learned a long time ago that giving back, and being positive was the key to living an enlightened life. For years I was bitter, and negative. I blamed everything that happened to me on anyone around me. But after I realized it was all me, I made the change to be more positive. Negative energy fuels a negative persona, while positive energy fuels a positive persona. You have to be willing to accept the choice to be giving, and positive. After accepting this choice I later came up with an equation that I incorporated into my daily life. You occupy the space that you’re in, utilize your time, and be realistic throughout your life.   S t² = R / _∞

6. Martial Arts has been crucial in the spread of and understanding of Chinese and other forms of Asian based medical approaches. How crucial is the practice of martial arts to your healing practice?

        For me martial arts was one of the things that saved my life. I have practiced and studied martial arts for over 25 years. After being diagnosed, I decided to adapt my knowledge and skills so I could help myself & others. The end result was a system that I created called, “The Divine Spear & Intrinsic Staff of WEISHENDO”. It is a daily fitness / diet plan for people who suffer from range of motion issues, and limited movement. It’s a unique blend of eastern and western techniques, and philosophy. The exercise plan teaches you the basics of movement, and how to retrain your body. The diet plan gives you the building blocks to a healthier body. The philosophy helps you to become stronger mentally, so you can deal with the daily struggles of life. All this combined with my other books are a part of what I call “The Road to Remission Series”.

7. For your book you use the image of yourself wrapped in a straight jacket. Can you explain the use of this image? 

        Ah yes the infamous straight jacket photo. I have had a lot of people ask me about this. I was actually going through one of my many trips to the ER at the time. What looked like a straight jacket was actually a white sheet. I was in a severe flare-up at the time. I told my wife Lori I was extremely cold so she gave me a few sheets to wrap myself up with. The nurse took my temperature which was extremely high.  But for some reason I could not get warm enough. For those that don’t know. When you are experiencing a flare-up, the symptoms of your illness can worsen without warning. This will cause you to feel ten times worse than you normally feel. It can also be something triggering the flare-up, depending on the illness. In my case I was extremely fatigued, dehydrated, and going through sever muscle spasms, topped off with a high fever. My body was completely out of sync. So the picture represented the lowest point I had ever been in my entire life. I also wanted to show people the affect an autoimmune disease could have on you if it were out of your control.

8. You and others have often described autoimmune diseases as being invisible. Can you explain to us a little bit about what this is like, to be sick but not look sick or disabled?

         To be sick but not appear to have any sign of a sickness or diseases, can be devastating to you mentally. You are constantly dealing with the side effects of your disease, but you also have to put up with harassment, and abuse from those that have no clue you’re sick. So when you’re out in public, to others you look completely normal. For example. I use a disability placard from time to time when I need to. To those that don’t know me, I look as though I am abusing the system by parking in a handicap parking space. With most autoimmune diseases your physical appearance can look normal, while the internal workings of your body are being affected.  So the term or phrase, “but you don’t look sick”, is often uttered by those that mock people who truly have a chronic disease.  

9. While devastating, illness can often teach us things. What are some of the lessons you have learned since getting sick?

         I think the first thing I learned was to not give up, and keep fighting. I never knew I had an internal will inside of me to keep fighting, until I was diagnosed. I lived for almost fifteen, sixteen years without ever going to a doctor. Then all of a sudden at the age of forty-six, I’m told I have an incurable disease. It was as if someone turned on a switch. I went into survival mode. The second thing was, how humble I became. For years you take simple things for granted. You never know how much you miss something until its gone. The third and most important was that it made me more generous to others, and there struggle. I want to do all I can, so others out there will not have to suffer like I did. If what I’m doing has helped anyone, then I have truly learned what it means to be an advocate. To me an advocate means giving everything you have, and never expecting anything in return.

10.  Any last words of advice for people who want to do what you do?

          The only thing I could say to anyone is what I say to myself every day.  “The will to fulfill, or advance in any task is lost, if you lack the effort to do so.” If you don’t really want to do it, it will show in your actions. You have to have a pure heart, and a compassion for life. If you’re doing this to be seen, or noticed, you will find out rather quickly that you’re wasting your time. Do it because it’s in your heart, and soul. Not because of any greed or lust you have built up inside of you.