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?
