You Got To Experience Shit Fully

For the past few weeks I have spent an inordinate amount of time asking the same question.  I asked this question to others and myself, never getting a good answer.  Then from a Zen Chaplin the answer was given to me.

I spent the last hour having a conversation with this gentleman.  We meet every so often and talk; just talk about whatever is on our minds. I always look forward to these discussions because I know I will walk away inspired and full of life.

I am standing by the front door getting ready to leave, my coat is on, my hand is on the door knob and I am getting ready to say goodbye. He then proceeds to tell me a story he hadn't yet shared with me. I am standing in a room filled with books and a Jackson Pollack poster hangs on the wall.  I never really got Pollack; people ask me my thoughts on him all the time and I am sure my ambient photography has subtly been influenced by his work. The Chaplin tells me the story of the Ox Herder painting in the Buddhist culture. With an exhausted breath laden with laughter he releases the words: “you need to experience shit fully”.

My question:

Why do we make the decisions that we do? Do we understand the repercussions of our decisions? Question that thought.  More times than not, when we choose on the side of “doubt” we choose sin.

The struggle to answer your own thoughts is the hardest thing that you will ever have to do.  To sit and listen to what your mind creates; to sit with a thought.  But did you create that thought? That thought that you are having right now? Yes, that one right there. Did it arise or did you create it? Are you the manifestor of that thought or merely the witness to what is arising in your conscious?

My answer: “you need to experience shit fully”.

I smile, thank him for his time and walk out into the cold air and bright sun knowing I just had one of those “A-ha!” moments.  I sit in my car and scribble notes down quickly in my journal.  I write “Do more, do less, experience shit fully.” I race home and try my best to describe the conversation to my wife. I am never good at this. I just had this life awakening God-slap-moment and when trying to get the words back out of my mouth in some sort of order it sounds so simple. Mind numbingly simple...it is always simple. Why is it that when you have a sudden realization of a great truth that it sounds so maddeningly simple when you say it out loud??

If I ever made what would be considered a pilgrimage, it was to City Lights bookstore in San Francisco Ca. The mecca for some of my favorite writers: Gary Snyder, Jack Kerouac, William Burroughs and Henry Miller all spent time in this store, both socially, politically and to sell books.

It was some time in the early nineties when I found out that I would be going to San Francisco.  I would be flying out of Pittsburgh, my first trip ever to the West Coast for a photography business trip. It still feels odd after all these years to use the words photo and business in the same sentence, but you gotta pay the mortgage.

Ok, so this is the early nineties, before Google maps and before I had money to pay a taxi driver to take me to City Lights book store before I had the common seance to route out a plan. I had a map of a bus station and a page torn out of the yellow pages taken from my hotel night stand.

I stayed at a hotel over by Fisherman’s Wharf.  The bookstore is a short jaunt by car or long walk right down Columbus Ave. in the heart of San Fran. Three bus stops later, and being lost for over 2hrs, I discover the closeness of my proximity.

This is life: experiencing shit fully, lost in a city and living the words of my favorite writer trying to find my way. This memory came back to me after the Zen Chaplain spoke those words.

Life is about non-stop creating.  Do not give up on being human. This has been my message that I have been shouting from the mountain top. If you stop creating then you give up on being human.  The body wants to be in creating mode at all time.  Creating itself anew is the basic condition essential to support biological growth.  This is how we are made up; the blood never stops flowing.  The body does this on its own.  The mind needs help. The mind will shut down and stop trying if we do not guide it, feed it, place effort and purpose into it.

Creativity is the fuel that move us...internally and externally. 

We create purposefully or the body creates disease, that is what our conversation was about.

Question that thought…is it really true?

It's odd to be told that your are healthy. People get put off when they are told that they are well.  "No, not me I have this problem, I have this ache, I take this pill", they will say.

What is healthy? No fatigue? Good blood work? A small waist line? A person who takes no pills? A person who sleeps well? A person who says their prayers and eats their vegetables?

Good health is experiencing shit fully. Do more, do less, change your routine, get off the treadmill of redundancy, stop reliving Groundhog Day.

Create something new.
Share it with somebody.

Experiences Not Goals

(Photo by Beth Kukucka)
Guitar, pen, camera...I love them all.  Christianity, Buddhism, Zen...I love them all.  Running, swimming, biking...why not?

42 forever, let me be 42 years old forever…..Hendrix, Morrison, Mozart & Jesus all had 33 years, I want 42 eternally. Ok, I do not want to die, but to live with the mindset that I have experienced a lot of experiences throughout this year of my life. It was the year of my rebirth; I hit the low of the lowest and came out the other end swinging for the fence (even hit a couple of them over).

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

With the weather becoming colder I have moved my workouts indoor: spending time on the bike peddling to nowhere and swimming laps in the pool.  This has made me realize the importance of cross-training in all aspects of my life (body, mind & soul).

P.S. For those of you living with MS/NMO swimming is euphoric.  If you live with that heavy numbness and tingling feeling anywhere in your body, it’s gone when you are in the water.

Let's start with the body...transform the body and the rest will follow.  Typically I hate gym workouts, truthfully I hate “workouts”. I enjoy the experience of doing something physical: trail running, hiking, walking.  None of them do I consider working out, to me all of them are about being outside enjoying life.

As my first season of running is winding down due to weather, I did not want to lose my momentum.  I moved indoors to keep my strength up.  At first being in a gym felt more akin to being a hamster on a wheel.  As I started to think about what I could accomplish when the weather breaks my indoor workouts became...well...enjoyable.

I am mulling over  the idea about doing a triathlon next summer (not an Iron Man, not that crazy, yet).  I do not even own a bike, nevertheless, the experience of participating in one is a solid aspiration.

Working out for the sake of working out is boring, this is why most of us fail at it.  We are not meant to be a hamster on a wheel. Placing the experience of a triathlon out there for myself, that's a carrot that I will run after.

This brings me to my lesson learned this year: No goals…..only experiences.

Goals fall short when we are only interested in the ending point (goals create suffering). Place a dream out there and that is something you can enjoy in all aspects of your life.

Set an experience, not a goal, for yourself. Experiences create powerful intentions which you can cross train into all facets of your life.

Cross train the body…health

Cross train the mind...creativity

Cross train the soul...perspective

Too many of us get stuck in being one thing (be it having a disease or job that is overwhelming or whatever it may be for you).

Be open to experience your dream...do not give up on being human.

Human-ness

At 42 you would think that I would have figured “it” out by now. The “it” being what it takes to be a human being.  All I know for sure is that I do not want to give up on being human. Being human, having “human-ness”...whatever the hell that means? Everything is being done for us: pills, plastics and large screen TVs...that's all we seem to need.

Heard a quote last week (sorry for forgetting who said it) and it went something like this: “Transformation happens subtly in the unconscious before it’s ever felt in the intellect”.  I like it.  It got me thinking about simple solutions that I stumbled into over the past couple of years on how to live with this disease.

My greatest hits of simple solutions includes water, walking, breathing and eating real food; the type of food that you would imagine the Garden of Eden had sprouting up all over the place.

I am not sure but I imagine water, walking, breathing and eating could be a formula for being human. At best it's a blueprint on how to live on this planet as long as you're not a fish. Toss in some consciousness with a little contemplation and I think I could be on my way to figuring “it” out. “Human-ness.”

When I look back over the past 50yrs I see the greatest achievements coming from the advancements in digital technology. It has brought us together.  The more I write, the closer I feel to you.  It feels more like a conversation than a blog post.  Digital technology gave that to us. We are connected.  I like that feeling.

The greatest failure of the past 50yrs? Processed food. What we call “food” is not food. With all the achievements in technology, medicine and science our food chain has created a generation of disease.  A planet of obesity or starvation, with few in between those two extremes.

I write this after spending three days in bed getting over my latest episode of a Devics attack.  Some people call them flare ups, exacerbations or an increase in residual symptoms. For me, I call it an attack because when it knocks me off me feet with a stabbing electric shock coming from inside my mid-spine, it’s an attack.  Last month when it happened to me I described it in the following words…

“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. Think 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 heart. 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.”

All of it was pretty much the same this time except I was awake and it lasted for about 15 minutes.

Why do I share this you? Because it’s the comeback story that’s worth telling.

For those of you following my work over this past year, you know about the life change that has occurred in me. 

The above quote “transformation happens subtly in the unconscious before it’s ever felt in the intellect”.  This is what I am getting at. My simple solutions have helped me with my quickest recovery to date.  My body wants to live in a healthy state. Don’t get me wrong, I am still barely getting up on my feet and I just popped two Excedrin before writing this.

This takes me back to why digital technology is good and processed foods are bad.

Digital technology is good because now it is easier to share with each other.  Six years ago when this started happening to me the internet was a little more than a phone book and bunches of scholarly articles. Facebook was still in diapers, my blog was a fetus and the closest I felt to being connected on the web was a pop-up ad that spiked my interest.

Today here we are: you read, I write, we exchange thoughts and even sometimes a letter. This is good.

Food is made fast, food is grown fast, in turn disease spreads fast in you.  Next time you think you are eating food there is a good chance that you are actually eating carbon and nitrogen isotopes, ammonia rather than actual real food (Garden of Eden type of stuff). Why do they do this to food? To move it from factory to the table fast, and being able to do that doesn't just fatten our bottoms, it exponentially fattens their bottom line.  The bulk of our meat and dairy is disease laden exactly because of this process.

So how do we kickstart transformation so it happens fast?  We could log-on to our big plastic screen and see what the Google-God has to say.  We could wait for the pill to kick in, numbing us away.  OR we could go back to eating real food.  Food that is the ingredient, not part of it amongst a gazillion ingredients we can't even read.  Michael Pollan, author of “The Omnivore’s Dilemma” has two good rules of thumb that I follow to understand real food: one - would your Great Grandmother recognize what your eating as food? Two - only eat food with five ingredients or less in them (that you can hopefully pronounce).

That ends my rant for today.  I would like to thank digital technology for helping me bring these words to you.

It's Possible ~ Meet Kirby

Meet Kirby. He is a 5yr old Jack Russell, a stroke survivor, paralyzed from the mid-spine down. Two years of life in his wheelchair to date.

Lesson learned: It's possible to do whatever you want when you do not know that you're lacking something.

Nobody told Kirby to lie down & die, so he didn’t.  Kirby is living his nature, which is to have fun and be a chick magnet for every girl walking by, including my 5yr old daughter. Joy is all this dog knows; he is beautiful in all his glory. This little dog is truly the meaning of the underdog; he is "Grace in action.”

For the next half hour I stood there watching Kirby and my daughter play. A conversation with Kirby’s owner told me that he “brings Kirby to the park to share the joy. No matter what adversity you may be facing Kirby teaches all of us to enjoy life.”

Kirby smacks you in the gut with reality. Life is good, if you want it to be good.

Over this past year on this journey of mine the universe (a.k.a God) keeps opening up doors to show me the way to possibilities. My part is to share them with you.

Think of me as your “Prophet of Possibilities” (haha)...a foreteller of what you can do. 

For a copy of the image above just follow this link (HERE)

On Death & Dying

This is a bloody depressing post today, read at your own state of mind. For those interested I was in a good mood while writing this, go figure.

You have no control over your birth, but you can influence your death. 

Death is a universal shared fate.  It is the only thing in life that we can have mastery over.  Mastery seems like an odd choice of words. The unknown can stop our life at any moment, nonetheless, it's the wakeful life that we can have supreme guidance over. We are given a lifetime to get good at dying.
From every thought, action, reaction, every morsel of food we digest to how we move our body all impact the destiny of the unavoidable. Every breath and each heartbeat brings us closer to the eternal. Let us not waste life.

Do not give up on being human. This is the lesson learned.  This is the reoccurring thought that I live with. If I ever do get around to writing a book I think I would call it “Do Not Give Up On Being Human: The Sequel”. Much has been shared with me this year and the subject of living one's life needs to be pointed out to all reading. 

Collectively it looks as though living-a-life has been forgotten about or maybe it's just too much work.  We exist, sustained on the generation before us.  This (our) generation has bred disease. With all our technology the only thing that we will leave for the next generation is disease, plastic, debt and a raped planet. (Bloody depressing, I warned you.)

When you live with a disease the thought of dying looms everpresent. At times when the illness is stronger than the body, I lie in bed and think about how I will die.

Is this how I will lose my life? Lying in this bed for days on end, fatigued, short of breath, body full of torment, embarrassed to be seen, guilty for the pain that I see in the eyes of my loved ones?

Odd that the inhabitants of the world have division with each other.  When in the end we all share the soil.  Dust to dust, raise up into the clouds reincarnated as rain to fall back down to the soil.

At dark times I think what  my funeral may be like.  Family staring down on my corpse lying in a pine box. I hope they dress me in comfortable clothes. I do not want to be in the afterlife wearing a suit and tie.  T-shirt, loose pants and barefoot is how I wish to walk into the Promise Land. I can hear the mourner's voices peering down at me: he is no longer in pain, he is in a better place, he tried so hard, he is at peace.

Wrap my body in a sackcloth and lower me into the ground, place me under a tree. There is no better feeling than the comfort that the shade of a tree provides, whatever the temperature is I am always comfortable under the shade of a tree.  No embalming, especially no embalming fluid to line the inside of me. If you must preserve me fill me up with Scotch, coffee or red wine do it with something I love.  I have spent my life trying to keep my body clean of chemicals and toxins; do not fill me up with the poisons that I have spent a lifetime avoiding. No cemetery, no tombstone...let my decay feed the Earth. Compost is what I want to be.

Why is it that we can not place effort into our dying? It is the conceivable-unconceivable thought we all must come to terms with. 

Do not give up on being human...this year I was given intimate knowledge of rebirth without the need for the passing of my soul. A living death; I exhaled out my last breath and inhaled new life into the same body. A metamorphosis of sort.

The days since have been a life lead with the purpose of dying well. To remain alive on top of the soil with no regrets, enjoying the shade of the tree.

I think about the stories that will be shared with my daughter on my passing about how her Dad lived life, pushing himself in body, mind and spirit.  I can live with that being my legacy.  I feel as if I have done something purposefully with my life.  You the reader, the sharer of your stories with me have told me so.

Be alive; the body is meant to be in a state of creation and evolution at all times.  Take delight in the destination of dying well.  Die fully present with a smile of grace on your face.  This is how I will go out, with a smile of grace on my face. I will walk through the pearly gates of Heaven high-fiving Jesus as I walk by.

Do not give up on what it means to be human. From a person who thinks about death I have learned to live life. 

Life: nothing special, only a gift given to all...do not squander this gift for as of tonight you have one less day to live.

Until then, I’ll wait and listen for the silence to come.

It’s Possible ~ Race Day Report

It’s Possible ~ Race Day Report

Awoke at 6:15am, turned on the coffee pot, showered, yoga, next I read some e-mails.

Check the temperature, it was currently 52 degrees at 7am, this changes how I need to dress.  I thought I would have been running in the mid-30’s for November in Pittsburgh. Run upstairs (trying not to wake the wife) and swap out shorts for pants and a bandana for a winter hat.

Poured myself a cup of coffee, filled up my travel mug for the drive out and fueled the body with a slice of peanut butter toast.  Pinned my race number to my shirt.  Wool toe-socks on, five-finger shoes on my feet and I’m out the door to run my first half marathon (or so I thought).

The morning air was warm and sweet with the last of the fragrance from leaves adding to the aroma. The morning twilight was starting to burn off, hints of pinks and purples lined the horizon.  The sky was filled with long drifts of white clouds splashed upon a canvas of blue (great day to take photos).  To my left hanging in the sky there was a full moon, sitting there in the empty space, no clouds to obstruct the view, only a rock in the sky to remind us that we all share this one planet. I often wonder if there were multiple moons in the atmosphere if that wold change our view on how we treat this planet. If we were to see three uninhabitable moons sitting there, corpses of dead planets, would that change us?

I arrive at North Park 15 minutes before race time, for a few moments I became fearful that I would be late because of morning park traffic caused by a duck crossings...ducks are not fast.  This then followed up by a herd of deer crossing the road.

Find a parking spot and head down for the pre-race kick off rally. This is only my second time running a race, never before was I in this environment. The room was electric, high energy to say the least. All ages, all sizes and all types of crazies filled up the room.

The race director stands up on a table and goes over the race rules: be nice to other runners. That was it.  Then he goes on to talk about changing the course route, it will now be a 16 mile run, not 13. WHAT? I have never ran more than 13 miles in my life.  The crowd gives a grumble of disappointment, a few cheers but not many. Later towards the end of the race I would discover that the entire course would cover closer to 18 miles.

Mile 1 - 6
Shot gun start and we’re off.  I see a man wearing a race t-shirt from a 50 mile race. “OK”, I think to myself, “I will let the ponytail guy set the pace for me, I will gently follow his lead.” The race started with a long run up a hill (a foreshadow of what is to come). This would be the only time that I would be on pavement for any stretch of time. Atop of the hill we turn left and we are in the woods. This part of the race was great; the landscape was beautiful with genteel rolling hills and sun still on the horizon to our left. We ran verging on military in style: quiet and in a long line formation. We came out of the woods to the first aid station.  My time was 6 miles in 54 minutes, I was more than happy to say the least. Drank down a small glass of water and on to the next leg of the run.

Mile 7-11
This is where the pack of runners broke apart and I found myself running by myself. This felt like trail running: virtually alone in the woods with the soil under my feet and a still mind to guide me through the path. I could see runners in front of me in the distance and a few behind me but never would I pass or be passed for the entire route. This is the part of the trail that I knew from my days of hiking with my dog.  One of the longest hill climbs of the day would be during this section. As I approached the climb I could see a long line of runners walking the hill (“Thank God”, I think to myself because in no way did I want to attempt running that monster of a hill).  I did get the chance to have one conversation on the hill climb. It was with the 50 miler-ponytail-guy from the start of the race. He told me about how extremely difficult this course is and that he is using today as practice for future 50 miler (I would hear more conversations like this as the race went on). Atop of the hill the ponytail guy takes off and I am again by myself, just soil and thoughts to keep me company.

At the end of mile 11 my time was 1hour and 43 minutes. I jogged into the aid station. PB&J sandwiches, pretzels, chips, candy, different colored watery drinks...think of a 5-year old’s birthday party. They had it, I needed it. Downed a couple of drink, ate half of a PB&J and discovered how out of my element I was.

As I rest and eat and talk with the other runners, I start to question if I picked a race greater than my ability. I have a conversation with man training for his “next” Ironman competition, a retired Navy Seal and two others training for their next 100 mile race.  As for me, I am training for nothing; all the training I did was to get me to this point in the race.

I am flooded with feelings of insecurity about my abilities, but on the other hand a sensation of “Damn...I am hanging with a Navy Seal, an Ironman competitor and a couple of ultra distance runners.”  This would be the last time of the day that I would be with this group of people; I’m pretty sure they were home, showered and eating before I would even complete the race.  But hey, I hung with the those people for 11 miles. That felt great.

Mile 12-13 (13.1: the goal mile)
After leaving the aid station the trail was lined up with runners back into military formation.  This part of the trail was all about elevation: you were either going up a hill or coming down a hill.  The leaves that lined the ground became as slippery as ice with all the foot traffic pressing them into the ground. Footing became challenging.  Only once did I fall during the entire day and it was during this part. I was going down hill and luckily there was a tree to break my fall (ouch).

Mile 13 at 2 hours and 7 minutes.
I did it. I ran my first half marathon.  Alone in the woods with only a phone app to give me any sense of accomplishment.

Mile 14 to the Finish.
This is where things got painfully hard. Mentally I was done. Marathon goal reached...despite the rest of the miles to the end.

The terrain continued to be rough. Zig-zags of climbing hills. My phone battery went dead at mile 15, 2 hours and 33 minutes into the race.

At this point I have run two miles further than at any time before and was on my legs a half hour longer than ever before until now.

I ran up next to a lady all in black and she asked me how my toe-shoes were treating me. I told her good.  She politely asked me to pass her because she just ran a 50 mile race yesterday and she did not want to slow me down.  I smile at her and say “God Bless you for the motivation” and she tells me “It’s possible”.

On the next down hill I came out of the woods back to the the starting point.  My wife, daughter and father were there to cheer me on. “I did it”, the breathless words came out of my body. My father went to get me some fluids, my daughter played in the park and I looked into my wife's eyes.

IT’S POSSIBLE…
“It’s possible” I think to myself. Nine months earlier my wife and I were trying to figure out life if I became immobile.  There I stood in pain, not from the disease but from the effort of living.  Having control over your pain, to know where it’s coming from, to know that you are stronger than disease is intoxicating.  Pain from effort feels so much better than pain from a transfixed, motionless state of mind due to some course of disease that you think you must follow.


After the race, I’m home laying on the sofa, my wife comes downstairs to share an e-mail with me that we received. The e-mail is from a woman in the medical industry who is taking care of a Multiple Sclerosis patient. She shares with us the condition of her patient’s progression. Not good.  Then she goes on to share with us that she has been reading my writings to her patient and the improvement that is starting to blossom in her. She is starting to stand on her own and exercise. This brought tears to our eyes. My wife cried as she read this to me.  All we could think was thank God that my condition has never progressed that far, and thank God that my story, my words, were a source of inspiration to her.

To end my race day with such a message of hope was a remarkable moment for both me and my wife.
That is the goal of running: not the miles or time but the awareness of possibilities that live in all of you.

This is what I want to share…..It’s possible….whatever you want is possible.  Living with a disease is nothing special. Do not give your body, mind and soul to something that is not special.  Live your life with the heart of a servant with the strength of fighter….

IT’S POSSIBLE….

Next race Thanksgiving morning.  


    

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”

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.

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.

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?

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.

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

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.

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

A New Chapter

The above photo is of my daughter heading out the door for her day at kindergarten: a new chapter. This day closes a chapter in my life. This day, especially the morning, was the most emotional day I have had since the day she was born. It seems that she was just squeezing my little finger moments after she was delivered and now 5yrs later she's heading out the door. She smiles and tells me she loves me. I smile, “I love you too baby girl”. We walk to the bus together.



Three months ago I set out in search of a fresh direction in life. Not a dramatic life change but a new sense of purpose. A new chapter.



The question was asked to me “What would your life look like if you could not fail?” My life would be the same minus the day-to-day worries. I would keep my business as is, wife and daughter as is, disease (almost) as is. I know how disturbing that must sound, who would keep a disease as is. I do want a cure. I know that this condition has brought me to this moment, to me actually writing down that I can mange this, better yet, I can do something good with it. I like that. It gives me the fresh direction in life that I’ve been searching for.



What gives me this optimistic outlook? I have no idea. Some people like sports, I like optimism. Let me tell you, this attitude of mine can piss people off, funny but true. How do I spread the word without pissing people off?



After I came out of my MS/DD closet and told the world “hey it's possible to be ok” the feedback has been staggered. Some place me on a mountain top, some just want me to shut up. One of the traits I like about myself is the ability to understand multiple perspectives when talking to people. Which means that when people place me on the mountain top those who wish to push me off are equally as right. I pray for a soft landing with the hope of helping a few along the way.



In the coming months I am going to have the opportunity to have a conversation about doing advocacy work. I like that. I hope it works out. I keep telling the world that I want to be the Lance Armstrong of MS/DD, this could be my start.



Let me leave you with a lesson learned (this lesson is equally applied in health, creativity & life).



Perfection is found in the process. Do not concern yourself with the results, concern yourself with the process.



Process over outcome, in every aspect of life.

Thank You's, Feedback & One Minute

It's a new day and before I get going on this post today there are a couple of people I would like to thank for helping me to get my story out to the world.



Joe Perez, who is a writer that I have followed for years. Thank you Joe for your inspiring words and providing me with a title for my story. Neal Griebling of Future Design Studio. Neal has been a guiding voice to me over this summer, helping me to write the next chapter of my life. Chris Miller, thank you for re-designing my blog and bringing a clear message of what I want to present to the world. Lastly to my wife, you are the only medicine I will ever need...



Now onto the feedback. This is what learned from the sharing of my story on Monday.



First, thank you for your e-mails, kind words and well wishes. They mad my day!



I received the greatest amount of feedback from outside the MS/DD community. That was not at all what I was expecting, I was expecting a collective “Yeah, it's possible to live well with a disease.”



What I received (for the most part) from within the MS/DD community were people sharing their stories with me about feeling judged when they tell their positive thoughts on Facebook pages, forums, websites...etc. I have felt that way too and it's an isolating feeling.



To those living with the disease I say THANK YOU for sharing your success stories with me. My advice to you is this: Be Not Afraid, Speak Up, Share, Share, Share those encouraging words.... We need more of this. Months ago I read a story about a man with DD getting back on his mountain bike and riding for the first time in a year. I loved it. There are people who still go for the mountain top. I want to be one of those people.



We all miss our previous life of wellness and pain free living. A life where the nightmares were left in our sleeping state. Today I breathe and that is good. Today you breathe and that is good. Let's do something new with our breath.



Lesson learned #2 (see Lesson Learned #1 HERE). One minute of effort a day leads to the greatest improvements.



Go start a new one minute of practice of your own. It could be one minute of writing, one minute of prayer or meditation, one minute of exercise, one minute of gratefulness, one minute of artistic practice, one minute of...



Share your minute with me.

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Living Life with the Heart of a Servant and the Strength of a Fighter

In October of 2005 I was told that I have a progressive form of Multiple Sclerosis, while also being diagnosed with Devics Disease a few years later. On January 26 of 2006, my wife gave birth to our daughter. I spent the first year of my daughter’s life sick. It was and is a life with symptoms that made it hard for me to walk, hard for me to have any feeling below the waist, both legs numb and tingling at all times never to subside, muscle weakness, loss of coordination, loss of muscle toning causing stiffness, pain and restricting free movement of my right hand and left side of my mid selection, optic neuritis, electrical shock and buzzing sensations zapping the middle of my back, fatigue, and random other whatnots.



Six years into this journey and I still have all of the symptoms listed above. What I no longer am is a person who identifies with being sick. I am not infallible...I get sick for periods at a time, I get flare-ups and attacks, I have an illness without a cure, I live with the effects that this disease has over me, but I am not sick. I live a well life. A life filled with effort and purpose by living a healthy and creative life. Being a father, husband, photographer and business owner has saved my life...all because I want to be there for everything.



I want to help you in your life in whatever way I can. My goal is to get others with this disease to stand and walk, to create things, to connect and to grow; to be well with a disease without a cure.



I want to be the Lance Armstrong of MS/DD. I want to start telling the world about how to be healthy while having a disease without a cure. Armstrong did this with cancer and a bike. I want to do this with MS/DD, a camera, a pen and my feet.



This past winter of 2011 I was barely able to get out of bed and when I did I wasn’t able to walk without the aid of a cane. Slowly I started to move daily...now in August of 2011 I am able to trail run five miles. I have the goal of becoming a charity runner for MS/DD.



For six years I have kept a blog but never used the words MS/DD. Briefly at times I would hint to my illness but never would the words be said out loud. Why? Fear.



I am a photographer, people hire me with the expectation that I will show up. Never have I wanted to place doubt in a client’s perception of me. Fear kept me from telling the world.



Today I can say that MS/DD has made me a better photographer, business man and hopefully husband and a father. It has taught me to show up. To show up to whatever needs to be focused on that day. It has taught me how to live in the present, not to dwell on what might be. Trust me that is hard to do, especially when you’re in a dark place of illness. It has taught me to enjoy life, to give to others without expectations, to live with purpose.



At this point in my life I want to share my success stories (& hopefully your success story) of living a well life with a disease that has no cure.



Let me be very clear that I am not talking about a cure. This is about living well with the disease. I have chased down many snake oil promises for a cure. What I am promoting is not a cure. It’s an outlook and a philosophy on living your life.



I have taken an integral approach to my wellness, body, mind and soul because all are of equal importance. I think about moving my body, I think about the food (fuel) that I place into my body, I think about my relationships, I think about my thoughts, I think about quieting my mind. I journal, I blog, I play guitar, I take photographs, I walk, I run, I pray, I meditate.



This disease can attack me at any moment, and attack is the right word. A right punch from this disease can blindside me at any moment and I have been there, all too often. I get up slowly at times but I always get up.



Lesson learned #1. There is no perfection, only the process of what I can control.



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 not lessons on 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, 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.