Steroids, Fog, Little People & a 22K

Six years ago I sat on the sofa alone with chemicals being dump into to my body.  A needle stuck into my vein, a tube sending clear fluid into my body, a bag of steroids hung atop a stand next to me letting gravity do its work. This ritual was repeated twice a day for a seven day stretch at a time.  What do I do while this outer-body experience slowly takes over my consciousness? I read a novel by Murakami, “Kafka on the Shore”.  Murakami writes in a subtle and surreal style that blends mundane and fantasy into a single thread; they are the perfect words to explain the altering experience of having chemicals shift your waking reality.

Over the next years the on-again-off-again experience of having mass doses of steroids dumped into my body would occur, almost seasonally it would seem. I would read a Murakami every time.  As the interior of my body would go on an unwanted journey I would give my mind a welcome journey of reading a book.  It was a simple recipe for getting through steroids: drink lots of miso soup, hold 25 minutes of meditation while laying flat on my bed and a Murakami novel to surrender my thoughts to. This became my cocktail of choice to survive the subtle and surreal madness of steroids.

After I finished the complete works of Murakami I decided “that’s it”, no more steroids for me. As a matter of fact, no more daily injections of anything. I even placed the Tylenol back on the shelf.  Bring on an attack, bring on an exacerbation; I will go solo fighting this disease.   No more chemicals, no more medicine. Just a glass of Scotch now and then to keep the demons at bay.

Then it happened. The attack.  Friday night at 1:55am, fast asleep, little people climb inside of me. Down my throat, they pass my heart to settle inside the middle of my spine.  They pull out a taser, the kind police use at riots to shock the unruly into submission. The little people start zapping and shocking my spine with large amounts of electricity. I convulse, I clinch all the muscles in my body at once, I flop around back and forth thinking of the image of a man in the electric chair. It’s like that but I’m lying in bed flat on my back. This goes on for three minutes, then the little people stop.  I lay there, breathless, scared, aware of the pummeled totality of my insides. I can feel not only my heartbeat but the entireness of my heat. I can feel the the complete circumference of my heart, I can feel the whole of my lungs, I am aware of all the organs in my chest, they all sit there as if they were placed there as foreign objects.

I wait for the little people to start attacking again, they do not, thankfully. It’s been months since the last attack and this assault was stronger than the previous ones.  At 2:55am I notice the clock. All quiet. The little people must have left. My breath slowly shallows and I drift off to sleep.

I awake at 7am. Zombie mode: not alive, not dead enough, have enough strength to drink coffee and stare out the window at the fallen leaves that cover the lawn.

Two day later I leave my house to go for a run, the little people have not returned in 48hrs. This is a good thing. I get out of my car and step onto the path.  I take the photo above and think to myself,  “Running into the fog is the perfect metaphor for living a life with a disease. I’m either running into the fog or out of the fog; either way I keep running.”

This Sunday I will run a 22k trail race to help raise awareness/funds for Neuromyelitis Optica (Devices) Spectrum Disease.

P.S.
Started reading a new Murakami novel “1Q84”

Moment

Current Reading: 1Q84 by Haruki Murakami
Current Music: Live at Hollywood High by Elvis Costello
Mood: Thankful
Sounds: Quite house
Smells: Cold morning air
Temperature:
 46 degrees
Thoughts: There is no violence in math.

Pitsburgh Night Skyline

Click on photo to enlarge to see the detail in the skyline, not to often that you see stars in a Pittsburgh sky.

Time Off

~ See you next week... got to run.

Remarkable

Waking up to inspiring words is nice, very nice. Since I have started to share living with a disease, you all keep sharing with me. It's great! I wake up, read e-mails and Facebook while drinking coffee. A few days go by that “you” do not share something amazing with me: poems, stories, painting, inspirational words...keep them coming, I need them.

Remarkable ~ the spirit of a servant's heart and strength of a fighter lives so strong in many of you.

This week I ran further than I ever had: 13.6 miles in 2hrs. On November 13 I will run my first half marathon. Honestly, I question my intentions....run for myself, run to inspire, run to raise money, run away from my fears, run towards a new life?

The one absolute that I have learned this year is living life with “purpose and effort” is good medicine.

“And this I share with you

For when you feel hopeless and alone

Out of the darkness

You shall surely find a guiding light 

That crosses your path to lift you up

If only you have faith 

And you will learn your most valuable lessons.



And I know that one day we will all learn these lessons

Because we are human with human bodies

That will ultimately fail us

The important thing is 
By the Grace of God

We will have lived a life of love and friendships

And then we will know the true meaning of life

Not just recite it -

Love IS all that really matters in the end.”

~ Patti Lellock

Photo of the Week

Essential Nature

4am, Sunday morning and I am up struggling with thoughts about “what is my essential nature?”  Things I think about before coffee?

Recently discovered that a new group of Gnostic texts exist. The writings are Apocalypses text. Simply put if your are familiar with the book of Revelations, the last book of the New Testament, it was when Roman Emperor Constantine and his team were organizing the first bible back in 300 A.D. They had a collection of at least eight books to pull from before choosing the “Revelation of John” to be the last book in the bible, the only book to represent the rapture.

Finding these new (very old) Apocalyptic literatures is exciting for me.  20 years ago when I first stumbled onto the Gnostic Gospels, they opened up a new world of thinking for me; a new way of seeing the world.  “Stumbled” is exactly what happened to me. I actually stumbled into a lady who was reading the Gnostic Gospels by Elaine Pagels. The universe has a way of smacking you into the right direction.

These lost Gospels represent a discovery of a different perspective on how to see the world.  In studying the different texts, I did not care if they were historical truth or divine word.  I was entranced by the idea that different perspectives helped to shape early Christian thoughts.

Nearly all of these books have been discounted by the organized religions of today. For me, I could care less about the arguments that churches have with one another about what is divine and what is false teaching. I like perspective, different viewpoints and I am completely ok with the idea that these books may have been written by the journalistic fringe hoping to shape a new world.

Zen asks you to see with essential clarity.  Not to be obscured by delusions of duality. Basically we, you, I, all of us including God, the universe and the computer screen that you are reading from are all made of the same essential nature.  No duality, just one big “I”. That is essential nature.

The lost Gospels (apocrypha writing) professes to be the narrative of Jesus and his teaching on the nature of God, the essential nature of us.

What you find out is that if you study Zen, the teachings of Jesus becomes clearer. And If you study the teachings of Jesus, the practice of Zen becomes clearer. One coin, two sides, no matter how many times you flip this coin it will always come up essential nature.

This is where it becomes problematic for me; glimpsing essential nature is not a straightforward path, few get to see it.  History has given us the stories of the prophets, mystics and enlightened who have touched this flickering light of essential nature, only to have a brief moment of this truth. From this brief experience they are to walk a lifetime of deep compassion and wisdom, spreading the “word” for the lack of a better example to all of us, the sheep.

What has me up now at 5am is why is this so hard for all of us to experience if it’s our essential nature? Why so many sheep and so few shepherds?

Turtles all the way up and turtles all the way down....if that means something to you then there is a good chance that you have grasped onto that flickering light of essential nature, so will you please explain it to me.

Digital Karma ~ Pirated by Thieves

Nietzsche “No price is too high to pay the privilege of owning yourself.”

You must own your digital karma.  Yesterday, yet again, our work was pirated. 

The sad part is that we love sharing our work. Just give us credit, truly that is all we ask. The distribution of our work has provided a very nice way of life for our family.

Our working philosophy is “Open Hand”. 

We embrace creative commons, even though we use it selectively now due to abuse. We release printing rights and at times copyrights to our clients. We choose to release the rights and educate our clients on all the different resources the digital marketplace has to offer.

We stay away from most conventional marketing and advertising. Choosing to build our business on daily blogging and building relationships with you, the reader.

This is not the first time that we have been ripped off by the digital culture, it has happened many times. It is becoming more and more frequent in the last couple of years.

That is why when our work is pirated by thieves it is the same as having someone break into your home and steal your stuff. 

The digital culture is the bricks that we build our business and life on. To be clear, many great things have happened for us because of the digital culture and our commitment to our open-hand philosophy.  We can no longer tolerate the thieving of our work.  We will call you out.

Deep bows of gratitude to those who have supported and shared our work ethically.  If our blogs, photos or writing resonates with you, please share it.  The sharing of our work is the foundation to how we sustain our business.

If you would like to use any of our work publicly or commercially please contact us by e-mail. Good chance we will say yes.

Art and Disease

It always amazes me that art funding is the first thing to get cut in the school and government budget.  When money is needed in a hurry for any cause, the first thing they do is to call in the artist.

It always amazes me how distant we are to disease. We collectively understand sickness and illness, those are the ailments that you see on TV whereupon commercials are trying sell you a pill. If a pill can fix your ill health, most of the time food, exercise and simple life changes on your part can as well.

You never see commercials on TV for incurable diseases trying to sell you a pill. You don't see commercials for a Cancer pill and the same with Multiple Sclerosis, Huntington's Disease or Parkinson's.

Incurable diseases are not marketable. They are not product driven illnesses, the bottom line is not profitable nor does the bottom line extend quality of life.

We universally care about people with incurable diseases; we do fundraisers of all types to help accumulate money for research.  We put on concerts, we sell paintings, we bake bread, we run far to help raise awareness for incurable diseases.

It's hard to ask you to give to my mission, as there are a lot of good causes out there. They are all of equal importance. 

Even so, I will ask.  Please go to this page (HERE) and read about what I am asking. If you can support me, thank you.

That is why it's up to the to artists to entertain us and to bring humanity to the cause: it's hard to dig deep if you're not raised up.

Arts only purpose is to serve.
In times of war send the musicians in first.

Photo of the Week

Moment

Current Reading: Sitting with Koans by John Loori
Current Music: Reality Tour by David Bowie
Mood: Need to go fast
Sounds: Dishwasher
Smells: Coffee & eggs
Temperature: 47 degrees  
Thoughts: I’m a guy, sitting on a cushion for long periods of time doing nothing come natural to me.

Take Action

Sometimes I forget, yet I can never get used to this sensation. Six years I have lived with this; a second shadow present in the light and alive in the dark. A new normal should arise after six years of living with the symptoms of Devic's Disease, yet it has not and I'm not sure why. Time heals all wounds despite this ever-present sensation, a second shadow pressing down on me. Today I am healthier, stronger, smarter and more grateful, however I can never get used to this sensation.

Tuesday afternoon I ran into the forest with no goals. To breathe and smile was the only expectation I placed on myself. The trail was dry and soft, the air was sweet and fragrant, the sky blue and still. The sights were magical; colors blossomed around every corner while wildflowers and fallen leaves of multicolored rainbows lined the trails. BREATHTAKING.

Earlier Tuesday morning I asked for help on how to organize raising money for NMO (the short name for Devic’s disease). The idea is simple: I will use running as my tool to promote charitable donations to NMO research. The response I received from this Facebook request was overwhelming, my inbox started to fill up instantly. I was taken aback by the immediate influx of help. Grateful is to small of a word to convey my thanks, nonetheless it's the word that I will use. Deep bows of gratitude to all of you. You have changed my life.

I can do this. I can push myself further to show others that you can live a healthy life with an incurable disease.

After I complete my first race I wrote down these words:

“I ran for those who could no longer run, walk or even move much. I ran for those who live with this disease in different stages of progression to show that it could be done. That you could do this...or walk, or jog around the block. In disease, as in life, it's hard to heal the mind if you do not heal the body first.”

I ran fueled by you, the reader, the responders, to my request and it felt good to know where the energy was coming from. Then it happened.

In Zen the word “Kensho” literally means seeing one’s nature, one’s true self. I had this peak experience while running. In a brief subtle moment I knew that I was doing the right thing with my life. I am moving in the right direction. I experientially felt the connection to you, the energy, the flow moving between us all. It may sound silly, but to me it was a significant insight of oneness with all. A transpersonal state of interconnectedness; I felt light and motionless as I ran forward. I smiled, I giggled, my eyes became teary and I knew this was a truth. I experientially felt this to be true. It was short lived, 2 minutes or less and it was subtle and magical...and then it passed.

It was heavenly yet nothing special. I did nothing to bring on this state. It felt magnificent to know that I am moving in the right direction.

Sometimes I forget, yet I can never get used to this sensation. Those words run deep for me. The journey of living with a disease is a mystical bugger of an un-natural world.

I often wonder if I can run further due to the fact that my leg are numb. Maybe I can not feel the pain or the tiredness that comes from running. Maybe that is my gift; to be able to do something I would have otherwise never attempted.

In the winter of this year I walked with a cane. In autumn I ran 10.7 miles for the first time in my life. It felt good. I came out of the woods knowing that I could have gone further. Today as I write this there is no soreness or discomfort in my legs (or body) at all.

November 13th I will run a 22k (1/2 marathon) trail race in the woods of North Park in Pittsburgh PA.

I will be asking for and raising money for Neuromyelitis Optica (the long name for Devic’s disease). Please join me on this journey.

Epilogue (I hope to be ending many posts with the below statement)

I never wanted to talk about my illness. Still don’t. I do not want to be a person whose life is defined by the diagnosis of a disease. I want to talk about the lessons learned from living with the disease. These are no lessons or medical advice or tips or tricks to wellness, nor are these suggestions on how to handle side effects from medicine. These are lessons about putting in the effort.

My goal is to help others lead a life filled with health, creativity and simplicity infused with the “heart of a servant” and the “strength of a fighter”. And that takes practice.

I invite you to join me in this journey. Please pass this along if it inspired you. Facebook this, Tweet this, e-mail this to friends and family struggling with these diseases.

Photo of the Week

This photography is licensed under a creative commons licensing: Please feel free to use and distribute it accordance with the licensing

Portrait of a Kind Man

To learn about this man go (HERE) to meet him (& me) on October 14th go (HERE). I will be giving a testimonial of my time spent with him.

Hope to see you there.

Empty Space

This photo has been sitting in my computer for too long now. I thought there would be a story to go with this image but there isn't. That was my answer.

If I was a painter this is what I would paint. Empty space, it appeals to me. The dream-like state that you have in a empty space is like no other sensation.

When you think about it, why does an empty space have an emotional lure to us at all?

I wish to compose art that can create an atmosphere that will hold attention but still give you, the viewer, the decision of where it goes.

This is what I want from art in my own life.

Street Photography

Tom Dinnning has written a post that I wanted to share with you. Title "S is for Simplicity: How Simplicity Will Improve Your Photography"....

You can see more of Tom's work on "Light Stalking Blog"

Street photography is evolving into a passion for me. Tom's perspective is spot on, thanks for sharing your work mate!

15 Minutes of Sharing

There is much to write about, not even sure were to start. I’ll start with a Thank You for all the e-mails this week, it's been a powerful couple of days of reading and responding to the messages.

This past Sunday I ran a race. Monday I shared it with you. Every day since you all have been sharing with me. Sharing is good. Sharing is something we often forget about. Not purposely, it's just that we are not connected enough to share.

One of my favorite things that was shared with me was motivational advice from a daughter to a mother with Devics. The daughter's words were “You can do anything you want for 15 minutes”...I loved it, I loved that a daughter said that to her mother. When your kid gives you advice like that you know you did a good job parenting. I ran into the woods today with those words chorusing in my head. I ran through muddy trails, slipping and slogging along, wanting to stop. I ran. I am thankful to the mother and daughter for sharing with me.

I wrote down the words in Monday’s post: Body, Mind and Soul has an order to it. That phrase resonated with a lot of you and I'm glad for that. When the body goes, we can share in the pain that it causes in the mind and soul, and it does cause pain.

Good health is weird. Do you know anybody in good health? We know lots of people in better states of health, but good heath? Poor health seems to be the natural condition to an evolved society, in a poor society the mosquitoes kill you, in an evolved society it's hidden toxins in our air, water, and food that kills us. It's strange how mysterious illness is.

Health is not mysterious; it is something we need to do in order to stay alive. Period.

You, we (I) can have an illness and be healthy (this is what many of you have shared with me). Placing effort into being healthy is not a hobby or a past-time. It is something we simply do to stay alive. Nothing special.

In times past we would hunt, fish, farm, gather, and build things to stay alive. Today we do not need to do any of those things to stay alive. We do them for pleasure. Staying alive is simply not that hard. We have stores for everything and pills for the rest of our problems...until that day of illness.

No matter what state your physical body is in, placing effort into being healthy is “nothing special”. It is just what we do to stay alive.

My 15 minutes of sharing.....

Bonus Question:
What does abundance mean to you?

Photo(s) of the Week

It's not to often that I share my wedding photography on this blog. To see the complete work you can go to my wife's blog (here) and our main site (here).

Moment

Current Reading: We Are All Weird by Seth Godin
Current Music: Becoming a Jackal by Villagers
Mood: Sparse effort
Sounds: Cars, wind, kitchen noise
Smells: Coffee & pancakes
Temperature: 72 degrees
Thoughts: Whatever we see is the way, practice seeing compassion.

Race Day Report

Let's start with the stats...
42 years old, 10K (6.2 Miles), 56 minutes

This was the completion (and the starting point) to a summer of work.

Throughout the race I would say to myself “fueled by Grace”. This mantra came from a conversation I had with an NMO patient (Devics patient) whose name is Grace. I never shared this story with you here. I never seemed to be able to write down the experience, needless to say it was good.

I ran for those who could no longer run, walk or even move much. I ran for those who live with this disease in different stages of progression to show that it could be done. That you could do this...or walk, or jog around the block. In disease as in life it's hard to heal the mind if you do not heal the body first.

Heal the body in whatever manor you can. I know some of you reading this have permanent damage, healing the body has a different meaning for you, different levels for all of us. It may be to stand on your own or walk down the hallway in your house or to walk to the mailbox. Whatever your goal is, go for it...I believe you can achieve it. When you do, share it with others.

The phrase "body, mind and soul" has an order to it. Improvements on the outside will help fix issues on the inside (ponder that grasshopper :)) Ok, so I sound like an infomercial, trust me it will help a lot.

The phrase "body, mind and soul" has an order to it.

Let's talk about the highlights of the race for me.

The last 1/2 mile was euphoric for me. I turned a corner and ran into a wall of people cheering. It felt great. I was high-fiveing little kids, waving to the pretty girls cheering, reading motivational signs and thanking spectators for the encouraging words. I loved it. Every step of it.

Around mile four I saw a young man seated in a wheelchair on the sidewalk clapping for the runners as they go by. This was so incredibly powerful for me to see. This young man had no idea why I was running. In truth I’m running to get as far away from the image of being in a wheelchair myself. Living with Devics or MS, the possibility of ending up in a wheelchair is always an ever-present thought. I sit in my neurologist's waiting room and read about my condition on the internet. The long term prognosis of using my own two feet diminish quickly. At that moment of seeing this young man, I think: as long as I can move my body, I will. In turn my body can heal my mind (sometimes thoughts need to be squashed).

The other highlights of the race for me was the other runners; all different types of people were out running. All ages, all sizes, all with a different purpose. I loved it. I loved being part of the pack.

Future goals: 15K, 1/2 marathon (hopefully I can find trail races. I love running in the forest).

The main goal is to run with a group of Devics and MS patients alongside of me. I would like to travel to different parts of the county and run with Devics/MS people.

Thank you for all the e-mails and facebook messages, they meant a lot to me!

Heart of a servant
Strength of a fighter



In the end what I did was nothing special. 14,000 people showed up and ran and that is the lesson learned. Sometimes doing nothing special feels really good.

Photo of the Week

The Accomplishment is Achieve...

The accomplishment is achieve in the act of doing...go sweep the floor. Those were the words said to me.

This past weekend I attended my first meditation retreat (sesshin), lots and lots of meditation. I missed out out on Saturday due to having to shoot a wedding. In truth, taking a day off in between days of sitting was a good thing for me. Waiting around doing nothing while waiting for radical nothingness to happen gets a-wee-bit-boring.

The highlight for me was a private interview (daisan) between teacher and student (me) for examining my practice. This was the first time I met the teacher, even the phrase “The Teacher” became a daunting movie-filled imagery of what to expect. I met the teacher, she looked like Mother Teresa without the veil, kind eyes, small features who smiles when she meditates.

The words that she spoke to me were subtle, direct, simple and light (if that can be a descriptive possibility). “You have a gift. So what. You had nothing to do with it.” “Compassion is adjusting the pillow unconsciously while you sleep. Be present.” OK so it was like having a conversation with Yoda and Mother Teresa combined.

Doing the work that I am supposed to being doing. That is what brought me to Zen practice, I tell her, she smiles. “How do you feel?” she asked. “Uncomfortable” I answer. “Good, do the work.” she responded.

Last week I wrote about “No Goal, No Thinking”. I received lots of feedback. It's never the post that you think will get good a response, it's always the sleepers. That's what I call my early morning work: sleepers.

To me the above sentence: The accomplishment is achieve in the act of doing, is the meaning to “No Goal, No Thinking”. This is the work that I feel I am supposed to be doing...to be sharing with you.

I have received many inspirational e-mails from you over this past month. Thank You! They fuel me. I am going to run my first race (10K) Sunday, and I will be filled with the stories that you have shared with me. I dedicate this run to you.

Heart of a servant
Strength of a fighter

Moment

Current Reading: The Heart of the Universe by Mu Soenq
Current Music: Sting Live in Berlin
Mood: Ready to run
Sounds: TV, wife on a phone call
Smells: Coffee
Temperature: 66 degrees
Thoughts: We are all simply flickering verbs in this dance we call life...

No Goals, No Thinking....

That’s what I am calling my next motivational speech. Want to come? OK, so I do not not have a motivational speech to invite you to, but who would want to attend something titled that pointless?

This summer has been filled with the greatest successes in my entire life. That's a lot to say. This summer I have surpassed many goals from my past. There was that summer when I started using the potty all by myself, that was good. The summer when I took the training wheels off my bike, hello scraped knees. The summer I learned to drive, the summer I went to college, the summer...OK you get the point; these past months have been good ones. Why you ask?

No goals, no thinking...only purpose.

If you happen to be a daily reader of this blog then you know how the events of this summers have transpired for me. If you are new to the blog, Hi! You can catch up on my life (HERE).

I started off this summer simply being, there was no point of failure for me at any time. If I woke up and placed effort into my day I was a winner. What would I win? The chance to get up and do it again. It was like that movie “Groundhog Day”, madness at times. I turned into a witness of my own life, observing the object self. Very trippy indeed.

A snowball's chance in Hell, that was my summer and the snowball survived. How did the snowball survive? By placing purpose and effort into the moments of now. Never planning beyond...(p.s. I am the snowball, trippy, I told you)

Things arise all around us all the time: the sun, the wind, our thoughts, creative passion and our health. The only thing is, we need to notice them.

That's where things get hard: slowing down, simplifying life to notice. This is where no goal, no thinking, is transformed into a powerful tool.

Let me give you two examples from my own life. The first is taken from a friend on photography advice. In photography my goal is to create something that the human eye cannot see. The advice was to slow down and let the story of now unfold to let the photo arise in the moment of now. Not me creating the moment but by me noticing what is arising and unfolding around us all the time. Good photography advice, great life advice, in turn my ability to see, to take better photos has grown exponentially over this summer. Plus I am a happier photographer to boot because of it.

Second example: health. When I started to up my exercise this summer, instead of hiring a trainer or writing out a must do work out list, I simply went out in my back yard and did pull-ups and push-ups. That was it. No set number, no set reps, no goal, no thinking...simply doing. That went well so next I started walking, then running, then I set a goal and all went to Hell.

The goal was to run a 10K (which I still plan on doing) but my running went from a place of joy, a place that I ran for the experience of running to a place of goal setting, a place of falling short of the goal and a place of thinking and thinking of why and what am I doing wrong.

After three days of rest I had a conversation that would get me back on the path. I sat on the back porch with my Uncle telling him about my summer. Telling him how I set out every day with no goals, only purpose. He looked at me and said "Quit thinking too. Thinking just slows you down. You ask too many unanswerable questions when you think."

So I took his advice.

I entered the woods this past week and ran further and faster then ever before.

I ran to notice what was arising...it felt great, I was back.

Lesson learned: Mindfulness is being aware of what is arising. No goal, no thinking needed, purpose and effort is all that is required.

Do the work.

Photo of the Week

Feel More, Hurt Less

Ten years...has it been that long?

A radical reversal will never happen so I sit in radical nothingness counting my breaths. Meditation (zazen) seems like the right thing to do, to offer to the world.

Sunday morning I awake to blue skies for the first time in days. The rain has left the skies.

Shower, coffee, stretching and out the door. The streets are empty, few cars, no people, all is still except for the birds. The birds litter the streets and sidewalks, they mull around in groups. Today even the birds don’t want to be in the sky.

I stop to buy coffee and the place is empty, one girl behind the counter woken out of her daydream by me asking for a dark roast.

I drive.

Music sounds better today. The melodies are healing. Art serves, I will never stop saying this.

Baptism by fire; if you didn't believe that day you never will.

The Sunday following that day, I stood in front of a congregation with a guitar in my arms and I played. In times of war send the musicians in first. The look on the congregation's faces were blank, numb without hope. The music affected all of us. It gave us back our breath.

Music never sounded the same as it did that morning. We choked back the tears as we played. We gave each other hugs between songs, we bowed down.

A radical reversal will never happen, we must live with this.

Moment

Current Reading: Italian Shoes by Henning Mankell
Current Music: So Much Shouting, So Much Laughter by Ani DiFranco
Mood: Concerned
Sounds: Washing machine
Smells: Coffee & Toast
Temperature: 75 degrees
Thoughts: Nothing Special - Get good at it.

Zen Is Not Spiritual

This summer I made the commitment to study and experience Zen. I wanted to put down the books and do the work that I have been reading about for so long. So far this is what I learned.

Zen is not spiritual.

Christianity is spiritual. The surrender, the worship, the not knowing, the afterlife, Heaven, Hell, the giving it all over to Jesus, the confession of sins, communion.

Zen is not spiritual at all, at least not yet, for me. Ten years I have read the works of Gary Snyder, Ken Wilber, John Daido Loori and Thich Nhat Hanh. These guys made Zen come alive for me. The pages read of Satori, the awakening mind, the collectiveness of Nirvana and inner peace found by following your own breath. Mindfulness!

Zen is not spiritual...it is nothing special, nevertheless there is something there.

Getting good at “Nothing Special” has evolved into a mantra of my own this summer. Do the work for the sake of doing the work. There is nothing special in that, yet there is something worth exploring, something worthy to add to life, to thoughts, to action.

Why? Nothing Special is the secret to touching spirituality, the fingerprint of God. Sounds like a phrase to spray on a t-shirt “nothing special" on the front and on the back "Zen is not spiritual".

Can being good at nothing special be the key to ultimate awareness? The new tagline for this blog is health, creativity, life, simplicity. All of these are nothing special. If you think about it, it's what we are suppose to do: be healthy to live, create something to partake in, life-whatever that is-is the journey we all share, and simplicity-who we are outwardly as who we are inwardly, taking off the mask and putting down the persona.

Last night as I walked out of the Zendo and to my car with cool wet air blowing in my face, a stranger walked by me and said “Good evening mate”. I think about my cousin and the news that she will receive today, I hope it's good. I get in my car and turn the music up loud and drive slowly through the college town roads trying my best not to hit the late night runners. I get home and place my hand on my sleeping daughter to feel her breath rising in her belly slowly and letting out of the belly slowly. I pour myself a glass a wine, I sit at the computer to write.

Zen is not spiritual.

Photography Side Projects

I have not been doing much of my photography side projects as of late.

My “Ambient Art” series has come to a close, 5yrs in creating that body of work. Time to step away, bring it to a close and move towards a new subject. The Ambient series has been an important creative outlet. Side projects make me a better photographer on game day.

It seems lately every time I have a conversation or read about photography the subject moves towards taking lots and lots of photos of a single subject and or theme. Simply press down on the shutter and rattling off 8 shots per second and then edit to select the best.

I’ve struggled with the idea that photography is a volume sport. Intentionally creating a photo is where it's at for me, not spraying through volumes of photos to pick the best.

I do understand that this is a personal process for the photographer on how they choose to create. I need to be quiet and selective before pressing the shutter. Creative moments live in the breath for me, not in the aftermath.

This brings me to a new side project and I am considering putting some time into: Abstract Wind is the project that I’ll be working on. I have this vision of capturing patterns in the wind, provided by dust, leaves, debris, cloud patterns and birds. This project has me bowing down to Mother Nature and shooting quick to capture as many frames as possible to find that perfect line and form that I wish to capture. So, I argue with myself on that maybe photography can be a volume sport.

It comes down to how you wish to "Do The Work". In the end the creative process is only about doing the work, those who wait for inspiration.....wait.

Heart & Strength Interview Series w/ Johnna Swilley-Lewis

Today I started a new series in which I highlight people living with Devics and/or MS who live life strong. Please let me introduce you to Johnna Swilley-Lewis, a small business owner living in Fort Smith, Arkansas who is living with Devics.

What prompted me to ask Johnna to do this interview with me is that she is a runner. I am looking for people to inspire me to push myself in my life with Devics/MS. Johnna did that for me. Thank you Johnna.

My goal is to show people that you can live well with a disease by placing “purpose and effort” into your life (not simply waiting for medicine to work, but by “you” the individual being proactive). I have personally opted out of taking medicine for my journey with Devics/MS. In no way in this interview do I wish to sway people on their medicine, that is personal decision. I do hope to shed light on the idea that we can have control over our health.

You call yourself the “crazy blind running fool”. What level of blindness are you at? How do you compensate when running being visually impaired?

My optic neuritis has not taken all of my sight, just the ability to focus.

I have a BIG mastiff "Hoss"(dog) who runs with me. At 225 lbs he is quite a deterrent and being the gentle giant that he is I feel safe. I also run with a local group.

My Opthamologist is awesome. He has seen me through a lot, especially the day that came last March when we realized I couldn't see the "BIG E " on the eye chart, which brings me to my favorite quote. "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot."

You have a goal of running a 1/2 marathon next March. What challenges will Devics/MS place on you during your training?

Currently I am recovering from an achilles tendon tear, after rehab I will start training for a 1/2 marathon in March and with luck a marathon in April. Don't get me wrong , I realize I have to "reason" with "my Devics" from time to time and take a break.

(***Editor Note***) (After reading Johnna's e-mails prior to posting this interview, she inspired me to sign up for my 1st 10k to be held on the 9/25).

How has the practice of alternative medicine influenced your life? (I love the word practice, people need to think about their health as a practice)

A wise man should consider that health is the greatest of human blessings, and learn how by his own thoughts to derive benefit from his illnesses - Hippocrates. I truly believe this, therefore I practice it. I do understand that Alternative Medicine is just that: alternative.

My journey began in 1986 and just like most has been the same. It started at a Rheumatologist, Neurologist, Pulmonologist and a lot of other "ologists". For me Western Meds made my personal situation worse, I was labeled "uncompliant" and even "crazy". I went as far as to get a Psych eval. Either way I HAVE DEVICS, IT DOES NOT HAVE ME! I have a vitamin regamen I follow that was prescribed and adjusted as needed by my Chiropractor, who is a Dr. of Naturopathy. Also, he has my MRIs and is well aware of my situation. I see him weekly. I also use a Massage therapist who specializes in reflexology.

What is your philosophy on living with Devics/MS?

I apologize to no one for the way I choose to face Devics, I OWN my life and until the time comes and I have to give it over to God I will plant my feet or whatever I have available to me and be a force to be reckoned with. I am the "crazy blind runner".

I am the "crazy blind runner". Thank you so much John for letting me share my story with you. God Bless