Living is the Cure ~ Life with NMO

Living is the cure.
Fueling your body for life is the cure.
My disease is not going away.

Hot pink running tights with a shaved head and a princess tiara adorned on top.  This is what I see about three runners ahead of me.  I pick up my pace to get a better view of her. She is wearing a white tank top that is almost transparent so that all could notice that she had her breasts removed. You could see the scarring breaking through the fabric of her shirt.  I look over at her and give her a nod of my head and hold up my fist in a manner of encouragement. I choke back tears….she nods back and takes off running. It would be the last time I would see her.

16,000 runners and I was lucky enough to run with the strongest one, even if it was only for a brief moment.

She has the cure, I say to myself. A cure dose not come from medicine solely. The cure comes from deep within your spirit.

For myself I am not interested in raising money for the cure. I am not interested in running for the cure. There are plenty of good people already doing that. I am interested in raising up spirits. I am interested in bringing the dead back to life. I am interested in running with the cure.

For this is the cure…getting up and doing is the cure. Fueling your body for life is the cure. Today when I run I move not with the disease, but with the cure. For this action, this moment is about living a life…and that is the cure.

Three months prior to the race on this very same street that I am running on today, I sat at a coffee house with a young man who himself has recently been diagnosed with NMO. It was oddly comforting to share my experience with someone going through what I have been living with. Never in the past decade has the opportunity presented itself for me to talk with another man about life with NMO.

We swap stories about the impressionist life we see out of our legally blind eyes; mine in the right eye, his is in both. We talk about medicine, side effects, hopefulness of being seen by certain doctors. We talk about fear, our future and the unknown. His attitude about living with a disease was promising. I knew at that moment that this young man would have trials ahead of him but in the end he would come out a victor.

“Run this race with me” I tell him. “I promise you when you cross that finish line you will have all the answers you need about how to live with NMO. Have all your loved ones there…anybody who has felt your pain standing at the finish line. For when you cross that line it will be healing to all (especially me).  

In hindsight, that was terrible advice for me to give. Here is a young man who is going through steroids therapy, rounds of infusions, MRI’s, countless blood tests and hours of sitting in waiting rooms. All of this will continue to lie ahead of him for a long time, if not forever. Here I sit across the table asking a legally blind man to spend the next three months training for a race. Luckily, for the betterment of his health, he did not run with me. But be warned: when your life with NMO becomes balanced (and it will) I will be asking you again.
I had to live my words for myself…it was hard.

About six weeks out from race day all started going wrong. I would awake every morning in pain. My legs were weak (and still are), numb and tingly (that in itself in nothing new). Holding my own body weight became a struggle; my balance barely there. Getting out of bed was as if pre-paralysis would set in every night. I would awake with limited mobility to move my legs. I would use my arms to lift myself out of bed, placing my feet on the floor, next pushing myself off of the bed and then catching my balance on the wall. Standing there I would take inventory of what was working and what was not. Holding my arm against the wall I would stand there for a moment to regain my balance and let my bare feet grab hold of the floor. Next with one hand on the bed and one hand on the wall, I would make my way out of the room, using furniture, door frames and the narrow hall wall to keep me standing upright. Next would come the steps; one hand on the railing and one on the wall, it would take all four of my limbs to get me down the steps. Why struggle so much you may be asking? There’s coffee down there. With my coffee and a book I would sit in a chair for about a half and hour before my body would come back to life.

This has become my morning ritual and, with yoga and meditation, soon I would walk out the door either for a walk, bike ride or a run (most or somedays…read on).

I have enough life experience with this disease to know that my body is not broken. My mornings are nothing more than a misfire of brain neurons and nerves not working together. Even though I am feeling pain, there is nothing physically wrong with my bones or muscles.

Sometimes that last sentence make me feel better…sometimes.

Pain from doing something feels much better than pain from simply waking up. But at times that is how my body works…my brain neurons like to sleep in much longer than the rest of me.

So here I am, weeks out from running my first major race since my last setback 18 months ago.

Coming out of that setback I wrote a blog post titled “The New Normal”, which would go on to do a lot of good for people. Every week e-mails and kind messages would pop up almost magically thanking me for those words. Those messages, from all parts of this globe, were the best medicine I could have asked for. It seemed every time I wanted to quit I would receive a note of thanks….God’s ways may not be that mysterious after all. Somedays I would push on, somedays I would take a nap.

Goddamn it, I must live those words.

The most confusing bugger for me was that there was no rhythm to this flair up. Somedays my body would be at 100% and somedays never getting past go.  This “no rhythm” was killing me. For when you get an attack/flair up, you are down for awhile, then you rehab yourself back to health. Rehabbing was not working this time due to the fact that there was no rhythm to what I was going through. Somedays I would go out into the woods and run for an hour and feel light and energetic, and somedays getting to the mailbox was not going to happen.

Life with my body became “the call and response”, as if there was a mystical Baptist preacher yelling out to the congregation and the congregation would respond back to him. My body would call out to me and I would have to respond differently to each message.

This is where things get a little weird. Imagine a miniature Incredible Hulk with a taser gun living in the middle of your spine. This mini-Hulk is trapped inside the flesh monster (a.k.a me) and he is zapping and shocking his way to freedom, but he never gets free. My skin is too thick to set him free. My skin is too thin to hold all of the Hulk’s rage inside of me. This is what happens sometimes, with NMO, when the brain tries to communicate with nerves and there is a misfire (or worse, several in a row). That misfire has to go somewhere and is made up of electrical currents with the mission to deliver messages to your body. Instead of that message reaching its intended target, it hits outside of the bullseye, bringing unimaginable zaps of pain, for me, in my middle back.

Being electrocuted from the inside out is a godawful experience; I am pretty sure that it will kill me someday. The shocks happen randomly and without notice. A 30 second experience of these back zaps leaves me winded and gasping for air, instantly fatiguing me and a black fog of haze sweeps over my mind. I can not hold a thought and listen to music at the same time. The world moves in fast forward as I move in slow motion. The call and response of back zaps is debilitating. The treatment: sitting still and hopefully in silence.

I may go months without an episode of zaps, then for a day or two, the mini-Hulk fights to get out.  Three to four weeks before the race, the mini-Hulk fought hard.

For six weeks prior to race day I had good days and dark days. There was no rhythm; all I could do is respond to the call. I failed a lot. I have drank more alcohol during this time than any other time in my life. I would have two to three drinks a night to numb myself and self-medicate, to calm the mini-Hulk living inside my back and to get through the night (do not do this). In the morning after, I stumbled my way down to the kitchen and make myself the perfect kale smoothie to fuel my body for the hypocritical life that I was living (do make kale smoothies).

With purpose, effort, bourbon and kale I made it to race day. I now run past the coffeehouse which inspired me to enter this race in the first place. I watch as an older, frail man passes me by with the words “pain that feels good” scribbled on the back of his shirt.  I look around at the16,000 other runners, all with their own stories of why they are running today. The one thing that we all share is that we did the work to get us here today…and that feel good.

As I round the last corner before the finish line, there is a line up of little kids on the sidewalk cheering and reaching their arms out, waving to the runners for a high five. I make my way through the pack slowing down to hight five each one of those kids. They filled my heart up with an energy that is unexplainable. If it was not for this disease in the first place I would not be running here today. I choke back tears once again.

I remember that this disease has given so much to me. My days are lived fully because of this disease. I see the world in such a beautiful way now; that’s why I write these articles. I want to share as many of my miracles with you as I can.  This disease has given me life and for that I am eternally grateful.  I am eternally grateful to you for reading and sharing these words with your loved ones and friends. I am eternally grateful for the messages that you have sent me. I am grateful for your prayers…prayers that I will never quite earn.  With deep bows of gratitude, each one of you  are a blessing in my life.

Living is the cure…
Pass it on.

Life with Disease & Other Random Stuff

“No matter how far you my dig into the the depths of your soul, eventually you will come out an asshole” -Norman Mailer

This is a good starting point to what I am about to share with you.

I live with a disease. Most of you reading this most likely know this about me. My feelings about life with a disease can be summed up in two words: nothing special.

We live in the age of compromise where we all carry the weight of diseases. It is nothing special; honestly it's akin to a time when making it through the winter was a hit or miss experience.

Every generation carries the sins-of-life. Our generation has disease.

Your disease may be self-inflicted, you may have smoked and cheeseburger-ed your way to disease or maybe the air and water carried the disease into your bloodstream.

Disease is the product of the past fifty years.  Corporations have been built as temples to the grandeur of illness. Disease is economics. Get a disease someone will profit from it. Someone will dedicate their life to the study of that disease. Someone will give up and sit on the sofa waiting for death to come.

What can a disease teach us about us? It is an "us", it's not a "you" or "I". It's not even a "we"; it's an “us.” Disease is now a social thing. There are clubs, groups, organizations, companies, schools, restaurants, chat rooms, social media sites, tour groups, cruises and vacation destinations all built to serve the ill.  Disease is an industry. That may seem too hard to accept, nonetheless it seems to be truth. Can you argue my point? How many jobs would be lost if disease went away?

Want to dip your toes into the cosmic quagmire? Google “seed, antibiotic, lobbyist” and see how many companies produce seeds to grow food and the very same company produces the antibiotic to cure the disease that may arise from the seed. Circle of life, circle of cash flow, sins of now.

Life is filled up with simple solutions, this has been my lesson learned. Look for the obvious. Walking and water, breathing and smiling...these have been by far my most favorite solutions.

Recently added to the list (forgive the subtle use of words to come next): if your shit stinks that means you are not well. Eat better food.

Simple solutions. Notice how we will stay away from anything that stinks accept for what we produce. Take the time and notice your bodily waste. The body can cure us if we only listen to it (or in this case smell it). Yeah, yeah, yeah, it's gross, I get it. But do you want to escape a life of disease? Truly we can exit the matrix. At this point, please refer to my opening quote. It has deep meaning on many levels.

Simple solutions arise if we only take the time to notice. If you put things in your body that create stink, it creates disease. If you place foods into your body that create an odorless passing, that creates good health.

When I am a healthy person living with my disease in a state of optimal health I feel like a prophet who will preach to anyone who will listen to the message.  When I am struck down by the disease I feel as if I am a fake; a person who could not live his truth.  Then I came to understand that the word "truth" should be replaced with the word "task".

Let me go off-subject to paint a picture about truth & task.

Replace the "truth of” living your beliefs with the “task of" living your faith. This simple flip of words opens up a new way to think about old ideologies.

"Truth" is someone else's idea on how we should live. But "task"...living with a task can give us purpose to live life with effort.  Having a disease is nothing special but it is important work if you choose to do it well.

With the flip of these words it will help us to create less harm in the world. It will help to teach us to live in this age of compromise. Disease is a product of this age but for those of us that live with a disease, we can not only live in the truth of not slowly dying from our illness but also the the task of showing others how to live with optimal health.  

My task 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.

We need to do the work in the soil before we can ever part the clouds.

Run The Play ~ Life with NMO

July 10th, 2013 I wrote a blog post titled "The New Normal Life with NMO", which in a nutshell was about living with a disease that will never give you a normal type of lifestyle. Ever.  Upon first publishing this post I thought that it did not resonate with my readers.  For days it sat virtually unread, but weeks later it found the people who needed to read it. For over 6 months now I have been slowly receiving e-mails and comments about the article.  By December I felt that I had done some good sharing my words.

When I wrote it, it was my swan song about disease writing.  I wanted to walk away from thinking, talking and explaining what life with NMO is like. For months I went silent; quietly rehabbing myself back to life.

For me: My new normal is living in rehab mode.

My body, at times, mysteriously slows down. Muscles become fatigued and week, balance is off, mind clarity is diminished and other random whatnots magically seem to strike me down.  

What do I do? I get back up, daily.  I am very good at getting back up.

Professional rehabbing is what I have become good at.  At times I feel cursed to be a rehabber for life.  I am good at getting better.  I have written the words countless times that you can be a healthy person and have a disease.  A disease is a condition you must live with.  Good health is a decision you must make. I made the decision to be a healthy person who has a disease.  I have lived my words as true as I can possibly hold myself accountable to them. I have succeeded, I have failed, I have gone the distance and I have come up short but every day I have played the game.

And then I went to a funeral.

That's where I learned how to live with my even newer normal.

I have been chasing death longer than anyone my age should.  I read books. Volunteered at a hospice. I sat with the dying. I prayed with the dying. I have romanticized the notion of being present at death. I am in fear of death.

I can remember being in a philosophy class in college (I love writing that; it makes me feel more worldly than I actually am). The class had the existential exercise on talking about one's own death.  The majority of the class spoke about no fear at the moment of death.  For me, at the time being Catholic and new into Zen, I wasn't sure which scared me more: the "Emptiness" of Zen or the "Form" of a Catholic afterlife. I called out bullshit to the class. The idea of accepting one's own death (even at the young age of 19) never sat well with me.  That memory of that specific conversation sits in my soul as a ghost waiting to find its way back home.  Home, be it the white light or the black cave.

I sat in a church pew one day, before this past Christmas Eve, attending the funeral of a man who lived a good life.  A man who died with love in his heart for his family and friends.  He was a good man and he will be deeply missed by all that knew him.

The Priest spoke about his time sitting with this dying man.  The Priest shared with us in the congregation his last conversation he had with him. These are his words as best as I can recall it.

"Father, I do not know how to die. I can see a white light but the Devil is blocking my way. Heal me or take me God. Just RUN THE PLAY. I will do your will."

For me, this is all the advice I will ever need.  You can build a library of all the world's philosophy and never say a thing as strong as those words.  A lifetime of wisdom spoke out loud before walking into Heaven.  This is what is meat by eternal life and eternal love: his words, lessons, compassion and love will live on past any of us reading this today...and that is a very good thing.

With his words "RUN THE PLAY" I now know what to do.  I know now how to live with a disease.

In the past I have used the phrase "Do not give up on being human". My life experiences brought me to those words.  That is what I have learned and have shared with you.  Those words still ring true for me.  All too often I see people with a disease choose not to live, choose not to place effort into their health, choose to give up on the life that they thought they were going to have.  They choose not to RUN THE PLAY.

I want to RUN THE PLAY.

Whatever darkness (disease) may get in my way I am going to look for the light (effort & health). I am not going to sit on the sidelines watching the game go by.  I will continue to not give up on being human until my soul reaches the other side.

I want my last sentence, my last breath of life to be that great...to inspire, to heal, to motivate others to live a good life. That is a legacy.  That is divine.  That is RUNNIG THE PLAY!

What do you want your last sentence to be?


 

The New Normal Life With NMO

This is all that I know for sure:

Eat your vegetables and say your prayers.
In case of emergency, breathe and smile.
Do not give up on being human.

This is it, this is all that I have learned from living with a disease. In the past two years I have written 27 blog posts about life with NMO (Devic’s disease). You would think that I would have lots to share. Sadly, I don’t. Nonetheless it’s an interesting read if I do say so myself! Take the time, give it a read.

For the better part of this year I have not written about my disease, nothing on the blog, nothing in my journal. Did my best to keep it out of my mind as much as possible. I tried to transform the notion of this disease being part of me. I failed.

I was trying to lose my shadow.  My shadow knocked me down. This past March I had an attack that put me in my place. Over two years on my journey towards a radical reversal gone. Back to the starting line. I did the work, slowly, daily, to rehab myself. Progress was minimal, my mindset was to learn to live with the new normal. The “new normal” is that there will never again be a normal.

The best part of my rehab was riding bikes with my wife.  Rides that I soon would call my “soul scrubbing sessions".  During these rides we would go on to have conversations about life, health, spirit and keeping the blue fog of sadness out of my mindset. We would go out for maybe 30 minutes followed by a short walk.  It is good.  It is the best medicine.  It is healing.  If you do not have a “soul scrubber” in your life I recommend you get one; they're not covered by health insurance, but by the grace of God.

Five months since the attack and I can now go for long walks in the woods but I can not run.  I can go for two hour bike rides with my wife, but I can barely climb a hill. Some days I have energy, some days I do not. Some days I am sore all over, some days I feel light as air.  The new normal is that there will never again be a normal.

For a long time I wanted to be the poster child to the NMO community.  I wanted to get people to eat better, to exercise more, to not give up on being human, to live healthy with a disease.

Then one day I no longer wanted to be the poster child.  I became tired of answering e-mails from people who never had the intention of placing effort into their wellness, never had the intention to put down the processed food, never had the intention to take responsibility for their own life.  If this offends some of you, so be it.  I am ok with that. Sometimes people just want to be sick and to have excuses for whatever keeps them from not being happy. Sometimes a disease is the best “get out of jail card”.

I was hoping to get Oprah to interview me for this part of the blog post, sadly she was not interested.  I can imagine the entire show: “Part One: Lance Armstrong falls from grace. And next up after the break, John Craig ousts himself as the NMO poster child, stepping down from a made up position that nobody asked him to do in the first place.”  Sounds like good TV to me.  I’m sure some drug company would be glad to be an advertiser for a show like that.

Then life changes. You get sick, you get better but you are not the same.  I became a chrysalis to my health. Not the same but morphed into something new.

Recently I have been receiving e-mails from people without a disease looking to help and inspire others with a disease. They are looking for someone who has succeeded in transforming their life with a disease. These e-mails breathe fresh air into my world. Thank you.  To these folks writing to me I say: Go out and be that soul scrubber to whoever needs you. Simply writing to me means that your are doing the work needed to help others. God bless you.”

Lesson learned: Let me expand on the above three things that I have learned.

Eat your vegetables: In the begging there was the Garden of Eden, not the chemical laden junk food tree that only produced disease. Fruits and vegetables create a healthy life, processed foods create disease. Your choice.

Say your prayers: If you are going to ask God for help or ask people to pray for you on your behalf...earn those prayers.  I believe in the power of prayer. What I do not believe in is waiting around for prayers to work.  Go out and place effort into the prayers that are being offered up on your behalf. There are lots of things for people to pray for in today’s world. If they are going to pray for you, do the work, put in the effort to becoming a healthy person. God helps those who help themselves.

Breathe: People forget this one all the time. Take five minutes each day and simply breathe in and out slowly.  Disease has a hard time living in an oxygen-rich environment.  Breath is our connection to life. Breath is how we can quiet the mind. Purposeful breath is how we learn to listen.

Smile: Laugh your way through this disease. It’s ok to laugh out loud when you fall down. When you live with a disease it will bring sadness to those around you, to those who have watched you suffer at times.  Giving smiles to those around you is one of the most healing things that you can do for others.  Go ahead right now, breathe and smile. It feels good all over.

Do not give up on being human: (stay with me on this one)
The paradox is that there are no paradoxes. There is no such thing as the new normal. In Zen, we try to transform our suffering. In Christianity, we try to be redeemed from our sins. In disease, we try to get back to “life before the illness”.  But in truth, all there really can be is the “is-ness” of this moment; it is what it is becoming.  How we treat each moment is up to us. Sometimes we do good and sometimes we fall short and that is normal. That is being human. Do not forget that.

In ending, I may not be the poster child that I once envisioned myself to be. At best, I have learned to manage life with the disease...as of today I have not succeeded but I also have not failed.  I hope that these words can help some of you along on your journey of managing your disease.

My journey continues…..

Heart of a servant
Strength of a fighter

John Craig

Race Day Report

I can see the starting line.  Never have I been this close before to the starting line.  In past races I have found myself a mile back from the starting gate.  Today I stand less than 50 feet from the front.

The guy in front of me is a small Asian man with extremely large calf muscles. Next to him is a guy wearing a T-shirt from his last 100 mile race.  On my right I overhear a conversation between two ladies about running a seven minute mile and hoping to qualify for the Boson marathon next year.  I am surrounded by runners...real live actual runners. Not Sunday morning joggers, not people who are out for fun; these people are going to be running and fast, very fast, and I am stuck in the middle of them.

The national anthem is sung, the shotgun goes off and I run.

Mile 1 -2
It starts off on a hill. No problem; I trained on lots of hills.  I am doing my best to keep up with the Asian man with the giant Popeye calves. He is twisting and turning his way through the crowd and I am keeping pace with him.  We make it to the top the of the first hill and then he blasts off.  That would be the last time I would see the small Asian man with the large calves.

Running through the streets of Squirrel Hill is great.  Fans, friends and supporters line the sidewalks as you run by listening to their cheers.  I see mile marker one in my sights. Eight minutes.  Did it read 8:00?? I just ran mile one in 8 minutes. I just shaved one minute off my normal time.

Next is the first down hill of the day and also the dreaded mile two.  Mile two is always the hardest for me. Mentally and physically hard. I talk myself through mile two.  I say things like 'Run your own race and think about how far you have come.' A year and a half ago I started running for the first time in my life.  Seven years ago I was diagnosed with a chronic disease.  I am not going to be writing much about the disease here in this post today (if you wish to read about it you can HERE). This is what I think about while running mile two.  It's like having Dr. Phil and Oprah coach me on in my own head...slightly maddening but it helps pass the time.  Mile marker number two. It reads 17 minutes.

Mile 3 - 4
It starts to rain. I hate running in the rain.  The temperature drops and I get cold.  It seems that I am the only person that can run, sweat and be cold all at the same time.

We turn the corner onto 5th Ave. in Oakland and to my left is one of the buildings that they filmed Batman Dark Night Rises at and to my right is Saint Paul Cathedral where I have shot many weddings. Next up is the first aid station.  A kind person hands me a cup of water.  I notice the rain drops splashing into and out of my cup.  The rain is coming down hard. I run straight through the college district of Oakland; this is the flat part of the course.  I tell myself to keep the same pace for you know what will be coming up soon.

Mile four: Boulevard of the Allies. This is one long grade up hill for the next mile.  One year ago this hill killed me.  It was my first race ever and I had no idea that this rising monster of a hill would have been so hard to run. You see I have driven this road a thousand times before never paying attention to the grade of the road.  This year I trained for this hill. This hill was my race.  I knew if I kept my steady pace on this hill that it would help my overall time and help to heal the wounds of last year. So here I go.  I lean into the hill and start swinging my arms faster, chin up and keep breathing at a steady a pace.  I start passing lots of people.  I am dodging, twisting and turning my way through the crowd of runners.  It was not that I was running faster at this point of the race, it was that I was not slowing down.  I am feeling good. Slightly surprised that my training was paying off.  Top of the hill all is good.  I am wet and cold but I conquered my Everest. In the words of James Brown...I feel good!

Mile 5 - 6
34 minutes into the race and only two miles to go. I start thinking that I should look around and enjoy the goings-on. This is my first race that I have ever listened to music while running and I realize how much of my surroundings that I have missed.  But a very special thank you to Mr. Jack White for providing the soundtrack. It was much appreciated.

This is what I see: a man, or what I think is a man, dressed in a bright orange body suit. Yep, bright orange body suit. This is not your everyday running suit; it is a body glove that completely covers his face, hands and feet.  I catch up to him and give him a long look. I am sure by this point in the race he was used to strange looks from the passersby.  I ask him what his story was and he just gives me a wave of the hand that I took as a sign of 'this is not a good time to talk buddy...running a race here.' If anybody out there knows the story of the orange-body-glove-running-man be sure to tell me.

Final leg: I run into downtown Pittsburgh.

The rain is still coming down but it has lightened up a good deal. The roads are filled with puddles and I am splashing my way through the street.  People line the streets and they are cheering, waving and holding up signs of encouragement for their loved ones.  I love this part. I love seeing all the supporters out and I am grateful that they are here in the rain.

Finish Line
I rounded the corner into Point Park and cross the finish line.

Let's end with the stats
43 years old. 10K (6.2 miles) in 51minutes. Sixth race completed in one year.

Lessons Learned: Do the work. Run your own race. Enjoy

To those living with NMO thank you for all your e-mails and kind words that you have shared with me over this past year.  I hope to run with each and everyone of you.

Inspire * Commit * Doubt

As of late I have been receiving e-mails about how my story has inspired people to commit to a healthier life. In all honesty it feels great to receive these notes of commitment.  Please keep them coming.

People are running races, biking the trails, starting advocacy work, eating plant-based diets...and I love it, I love it, I love it. I know this sounds new-agey but I believe it is a manifestation of the intentions that I have placed. Never thought my thoughts could create...well they do. I learned this in many different avenues of my life.  Prayer, purpose and effort will carry you far…but do not forget the hard work: intentions love sweat.

Last year when I had my coming-out-of-the-closet experience (so to speak) of telling the world that I was and have been living with a chronic disease for the past six plus years, at no time did I think it would lead me to what is happening all around me today.

My not telling the world was a heavy burden on my heart for too long.  Not once did I want people to look at me as the sick kid, never did I want my clients knowing that I had a disease, never did I want my daughter to think of her Dad as sickly… Never did I want the world seeing me as those close few did.

During a conversation with a Zen Chaplin, in which he out right told me it is nothing special having a disease, an internal extraordinary shift happened inside me. I had to question hard what for so long I held onto as a belief that I was doing the right thing. Damn that was difficult to hear, but deep inside I knew he was right.

One of the great thing about having a disease is the specialness that comes along with it.  Yeah, your sick most of the time and ok, you have to deal with pain or disabilities but hey, it also comes with the get-out-of-jail-free card that you can use anytime you want.  And we/I used it, all too often. And sometimes, just sometimes, it feels really good knowing that you are holding on to that card.

Little did I know it was nothing special telling the world, he was right.  Nobody cared or at least that’s what I thought at the time.  Nobody cared about the disease, but they did care about me and how I decided to live with the preternatural monkey on my back.

Today I run, bike, eat a plant-based diet, volunteer at a hospice center, meditate and do yoga. I have a wife, a daughter and a photography business that I share with my wife (honestly she does the bulk of the work, I mainly carry heavy things and look good).  I feel happy with the life that I have built alongside my wife...but it is nothing special; it’s only life.

After writing the paragraph like the one above my ego self destructs then reincarnates right in front of me and then proceeds to slap me in the face, all the while calling me an ass that I just listed the random stuff that I am into...nothing special is right, jackass.

This past year I have been battling my ego and my purpose on the topic of “who am I?”...and nobody cares who I am...very existential of me.

Last August I published a blog post titled: “Living life with the heart of a servant and the strength of a fighter”. Inside that I post I wrote “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.” Receiving the e-mails over this past year has made me feel great about what I wrote a year ago.  I also reflect on the fact that I can do none of this for anybody but myself. I will never, nor should I, strive to be Lance Armstrong

Lesson learned ~ Who am I? I am this moment.

I found my spirt after searching for the majority of my life...I can always remember searching for my spirit but I can not recall ever losing it in the first place.  It’s an odd thing seeking something that was never lost in the first place.  Despite that fact, we all seem to seek after the magical bugger that we collectively call “spirit”.

My spirit, my connectedness to my place in this universe, was aloof.  I was looking in all the wrong places. Hence, it was not a “point of enlightenment” or “dark night of the soul” that brought me to this realization...it was my elbows. Yes, my elbows. What an inconsequential body part. You can’t ever really even see them without having to twist and tort your body in an uncomfortable way, but nonetheless these nubs on the back of my arms would turn out to be the awakening that I have been seeking.  How could elbows hold the answers to life’s question, you ask?

Sitting on my meditation cushion in the act of meditating poorly (in all truth most meditators meditate poorly. It’s long, boring and uncomfortable but yet we do it because all the Sages, Prophets and Oprah tell us it’s good to do...and it is) and an unimportant insignificant thought popped into my mind: and awareness that my elbows are always there and ever-present in the moment and all I had to do was notice them.

There is no moment that is special.  My elbows and chronic disease has taught me that.  Spirit is nothing special; it is simply noticing the moment that you are in.

There it was. That item that I never lost...my spirit showing me its original face. I smile back and then my shadow, my spirit and me all go outside holding hands for a smoothie...spirits love smoothies.

Lessened learned ~ Give up on your beliefs and question everything.

Along with a diagnosis of a chronic disease comes a new set of beliefs.  I have no idea how we get this new set of beliefs but all that I know for sure is that it happens somewhere between the doctors’ waiting rooms, standing in line at the pharmacy and doing Google searches. We are magically anointed with a new set of beliefs.

Doubt your beliefs...a lot of bad things happen due to beliefs.  Most evil is done all over the world due to extreme and confident beliefs.  Bigotry, racism, holy wars, terrorism and anti-anything is all done because of our beliefs.  Your beliefs can keep you sick.  A chronic disease does not mean that you have to live with an illness 100% of the time,

Keep your faith but question your beliefs.

Have faith in that nagging calling deep in your gut. That mystical rascal is holding onto some truth that is a perfect fit for you “right now” and in “this moment”.  But don’t forget the belief in doubt. Doubt will tell you to get off your ass and do something...and doing something is much better than sitting down on your beliefs.

Inspire yourself, commit to this moment.

(You may also like)

Radical Reversal: The History of my Future.

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

Race Day Report ~ Jason’s Jog

                          ( photo by ???? If you know who took this pic please let me know so I can give them credit)

Sunday June 3, 10 am and I am on the starting line. This is my favorite moment on race day.  I scan the crowd to see the who's who of runners.  Here I stand with a collective group of runners all running toward the purpose of doing something good. This race felt extra special for me.

This race day report started months before race day.  I had the opportunity to have a networking meeting with the race organizer Sarah Mayer.  Our meeting was not about the run but a business to business networking meet up.  A mutual friend suggested we get to know each other as possible referral resources.  After a few e-mail exchanges I am sitting in a coffee house having a conversation with Sarah.  

It started off like all networking meet ups.  This is what I do, this is what she does, this is how we can help each other's businesses grow.  Then the conversation quickly changed.  I’m not sure how, I think maybe she noticed my toe shoes and asked if I ran. 

We talked about our love for running.  The fun and craziness of a race crowd.  Our mutual passion bordering on obsession for running.  I tell her about life with NMO and she tells me the story of her pregnancy….

“I was 20 weeks pregnant when I found out that my son had a birth defect that is fatal in fifty percent of the cases.  My husband and I were told that our unborn son had a birth defect known as congenital diaphragmatic hernia or CDH for short.  We had never heard of this defect; it sounded foreign to us.  Little did we know then how acquainted we would become with this acronym. “

Today her son is a happy, healthy toddler.  A true success story.  

Sarah decided to do something for her son and all children living with CDH. Once a year she will organize a charity run.  I was hooked; there was no way that I was not going to to be part of this race day.

10K race:

We are running around the lake at North Park.  My decision before the run was to just have fun, not to run hard.  My knee is about 90% better from the Pittsburgh marathon.  I did not want to have a set back on my recovering knee. I told myself that I would take it and easy. I ran with a friend and made a couple of other friends along the way. Conversation while running is a nice thing for me, it made the race go by quickly.

First aid station was at mile marker 2. My hardest mile behind me, no knee pain and nice lady handing me a cup of water. 

The race goes smooth.  The weather was cool and sky was blue and I ran with a collective group all running towards the same goal.

I crossed the finish line at 59 minutes and  high-five the runners that I ran with.  We congratulate each other on a job well done. 

I go over to the race tent and grab an orange slice and a cup of gator aid. 

A day later I receive a Facebook note telling me that I have won for my age group.  Suffice it to say, there is not much competition in the 40 to 45 age group. There was only one other person in my age group and for all I know he could have been a walker. There will be no victory lap for me…..

One thing that does feel really good about the win is...I won on the day that all I wanted to do is have fun and help raise some money for a good cause….and for that I feel great.


To make an online donation to Global CDH in the name of Jaxson's Jog, click here. 

Donate ~ Take Action

Here is a photo that was taken of me as I cross the finish of the PGH 1/2 marathon. You can read my full story of race day (HERE)

Donate

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Race Day Report ~ Pittsburgh Marathon

It felt as if all of humanity lined up for the race. 25,000 people all moving in the same direction.  Every race, creed and color stood side by side; what a privilege to be included. 

I stand in a sea of people as far as I can see in front of me and behind me a sea of runners, all waiting for the start.

I think about the passing of a little boy who will never get to run, I think about the people that I have visited in the hospital, I think of the e-mail conversations that I have had over the last year. I think about the adventure in service this journey has taken me on. 

I am wearing a t-shirt to represent my reason and my cause for being here.  The shirt was designed by a fellow NMO’er and custom-printed by another NMO’er.  In my pocket I carry a small Fairy stone for luck.  The stone was given to me also by an NMO’er.  The stone is for luck and blessing (both I would need as I would come to find out). Within the stone you can see the shape of a cross. I would hold this stone in my hand at the starting line rolling the rock between my fingers, it gave me comfort and helped to settle my nerves.

At this moment the NMO community is being pulled together for a common purpose, not pushed together for a common enemy (living with Neuromyelitis Optica). This is how I felt, I hoped others did as well.

My day started at 5:50 am being awoken by my alarm. I showered, had coffee, did yoga and then watched the morning news to get the weather report..no rain is all I hoped for. The Fairy stone is working already! A slice of toast with peanut butter and out the door I go. 

My father picks me up and drives me as close to the starting line as he could.  I jump out of the car on an off ramp from the highway.  Walked through a patch of grass separating the highway from the down street and there I was at the far back entrance to the starting line. 

It’s now 7:15 and the streets are filled with runners, spectators and race day volunteers.  The volunteers did everything; thank you is too small of a word. They kept us hydrated, updated on mileage and cheered us on the entire way….they made the run so much more fun.

7:30 am the Star Spangled Banner was sung, the crowd erupted.  Over my head a news helicopter flew low, in the upper sky I could see a jet flying between two buildings. It was a picturesque moment. A whistle blows in the far off distance.

The race has started...it would take me another 25 minutes of standing in line before I would even make it to the stating line.

Mile 1-2
This was more of fast walking then a jog.  Trying my best not to knock into anyone and trying my best to avoid the people who are acting like this is a shot gun start.  I ran straight through the middle of downtown Pittsburgh, a road I have driven thousands of times. Today I was in the strangest traffic jam of my life.  People walking, people sprinting, people jogging and me trying not to get stomped on.

In running, the hardest mile for me is always mile number two.  This is when mentally I think of all the bad stuff, I think “am I really doing anything for the NMO community? I could still be in bed, give up now, avoid the pain.” It’s awful.  Mile #2 is suffering. Suffering is the only cure for being human, somebody once told me. I run. There it is: the first hydration station. I did it...I ran the toughest mile of the day and it’s behind me now. I am greeted by a nice lady who hands me a cup of Gatorade and pats me on my back.

Mile 3 - 6
This is where I would run over 3 of the 5 bridges that I would cross.  Pittsburgh is a glorious city to see from a bridge.  If you are ever in this town give yourself a treat and walk the bridges and the riverfront sidewalks.  There is loads of beauty, history and architecture to been seen. Photographically I consider Pittsburgh to be my mistress of creativity, always there and never having to ask permission and she never let’s me down.

My left knee starts to burn, ache and stiffen up. Damn I think to myself, this is not good. I stop to adjust the patellar-tendon knee strap that I was wearing as a precaution (from an injury 3 weeks prior).  I ran a mock-marathon with a city-running-club to prepare myself for the road miles that would I have to put in.  I am a trail runner at heart.  I ran the 12.6 city run with much enjoyment.  After the run my knee had the same sensation that I am currently feeling now.  That day my run was over, today I have 10 more miles to go.

Pittsburgh is known for being the city of bridges, this day it was the city of fans.  The bridge sidewalks were filled with supporters and fans cheering us all on.  This is the part of the race running that I love.  Hundreds of strangers, supporters and families cheering the runners on; the ego inside of me eats it all up.  Plus the distraction is welcoming to get my mind off the growing pain.

Mile 7 - 10
Pain, ego and purpose is all I have left.  The knee is swelling, thoughts of quitting fill my head.  I think about the little boy with NMO who has passed away, I think about all the training I put in.  I grab the Fairy stone that is in my right pocket and place it into the left pocket, the side of pain.

I walk into the hydration station. I take two cups of Gatorade, readjust my knee strap, three deep breaths and I am off.
I run over the West End bridge thinking if I get over the bridge I will make it to the end.  The velcro on my patella strap gives away falling to my ankle. (insert curse words here) I limp over to the side of the road re-attaching the band.  I begin to repeat the mantra “heart of servant, strength of a fighter.” These are the words I would tell myself when this journey of running started a little under a year ago. Here I am the want-to-be-Lance-Armstrong of the  community thinking about giving up.

Endure more pain, chronic disease creates pain that is out of your control, today I am in control of the pain...I can do this. I run.

At the mile marker 10 I yell out “Hell Yea!” This was asked of me by a fellow NMO’er and it was also a great time to yell out load to let off some steam.  Surprisingly no one seemed to care or even take a second look at the limping runner yelling at the top of his lungs.

Mile 10 - 13
Last bridge of the day to cross, this is it the home stretch. I started over the Birmingham bridge leaving the South Side of Pittsburgh to my back.  Halfway over the bridge coming at me is a giant African American man (I do mean GIANT) riding a mythical-of-a-whopper of a mighty Unicycle.  I do mean mighty...this man had to be at least 340lbs with a smile on his face that you would only see in a Barnum & Bailey Circus….must be an illusion, possibly a mirage, a Pittsburgh 3 rivers mirage..it’s possible. I laugh, smile and he high 5’s me, actually he reaches low I reach high as he passes by me with his cackling laugh.

Mile marker 12, Gatorade and kind words from the volunteers cheering me on “1 mile to go, 1 mile to go, you can do it!” they yell out.  God bless these, people they made the day so much more enjoyable.

Run the last hill of the day, run the last down hill of the day and there it will be: the promise land.


Mile 13 -13.1 The Finish Line
This is it. I did it. I endured the pain.  I tell myself to enjoy the moment, take your time and take in all the sights. Then I notice how many people were running with purpose, effort and personal reason...running side by side with me. To my left was a group of ladies all dressed in pink matching t-shirts.  They are running for breast cancer.  To my right is a group of people running in purple for Autism research.  In front of me were four young ladies running arm-in-arm as they crossed the finish line all wearing matching white t-shirt with the words “I run to stop MS”.

I wear a green t-shirt with the letters NMO in large print.  The pain did not matter.  Nor did my time or miles matter...all that matters is the one thing I know for sure….

You do not need a cure to be healed. Today I became a POSSIBILITARIAN!


After the race ~
As soon as I cross the finish line they place a “runner of steel medal” around my neck.  I am going to give this to my daughter, she will love it.  Hopefully when she grows up she will know that her old dad did something that only %1 of the nation will every do, at least for this one day.

I limp over to the aid station and a kind elderly woman hands me a full glass of Gatorade and a banana. I say “God bless you” and give her hug.  Not sure if she appreciated the sweaty strange man hugging her but she was polite and said “on your way now honey”.

I find a patch of grass away from the crowd and sit down for the first time since my Father dropped me off hours ago. 

Sometimes only metaphors will do: “stay with the mystery” I say to myself... once again the earth shined.

Take Acton & Make Some Noise

In 24 days, on May 6, I will run the Pittsburgh half marathon: 13.1 miles of celebrating life. A year ago, to be specific it was ten months ago, it was unimaginable that I would be strong enough to take a long walk. The thought of running at all...anywhere...wasn’t even a consideration for me.

This will be my fourth race and second half marathon since I started running in June of 2011.

It’s about completing not competing.

The above quote is the best description of what it is like living with a chronic illness. There are no winners. It is about getting through the day, every day. Everyday is about completing; doing the best to make it a better day than the one before. That is not easy.

You do not need a cure to be healed...that’s why I run.

I am not running in the hopes of raising enough money that medical researchers will have unlimited funds to do their work. But I do hope you donate.

I am running in the hopes that other people with chronic illnesses will run alongside me in whatever way they can...be it body, mind or soul.

It’s possible and it’s nothing special; it has taken me six years to learn (experience) this lesson. This is why I run.

When all possibilities are removed from anybody winning, this is when the best of humanity comes out. This is why I run.  Run with me in whatever way you can.

All too often in life we need a winner, we need to pick a side, we need to pick an adversary.

I say ~ 
We need to be pulled together for a common gain, not pushed together by a common enemy.  This is why I run.

Help me share this message with others.

Take Action & Make Some Noise…

I run for those who can no longer run, walk or even move much. I run for those who live with this disease in different stages of progression to show that it can 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 invite you to join me in this journey. Please share this if it inspired you. Facebook this, Tweet this, e-mail this to friends and family struggling with a chronic diseases.

For additional reading about me & my journey read:

~ Living Life with the Heart of a Servant and the Strength of a fighter

~ Radical Reversal: The History of my Future

Going Long for the Sake of Going Long.

 

At times life changes you.  At times you can change your life. This happens when you go long for the sake of going long.

Wednesday morning I poured sea salt and honey into my water bottle to make a homemade sports drink. I scavenged through my kitchen cabinets looking for food to pack for my run and discovered five dried apricots. Grabbed my headphones, iPod, toe socks, Vibrams five fingers and I Priused away for my day of trail running.

Drive about 45 minutes from my home, passing the airport, turn right off the highway. Five miles of driving down a county road, passing two bait shops, one gas station and fields of farm land.

I turn left into Raccoon State Park.  I park in a gravel lot, two trailhead markers point my way. I slip on my brown fleece jacket, which would not be warm enough for the day’s weather, tie my bandanna over my head. Twenty miles in either direction will bring me back to the starting point. This is my new goal, my Everest, the Raccoon loop, 20 miles of trail running.

This would not be the day for completing the task, it would be the stating point for the experience.

This day I would go for a 10 mile run.  I would get lost somewhere around mile 4.  I would find the ranger station at mile 6. A frustrated park employee from behind the counter would point me to the main road and proceed to tell me “go that way” with a smirk of don’t bother me on her face. I folded up the park map that I grabbed from the front desk and started running on the road.

At this point I had no idea how far I was away from my car. The map was of no help to me for a couple of reasons: 1) I am a bad map reader 2) I could not find the ranger station on the map for a reference point 3) The park covers 7,572 of acre and I just ran 6 miles through the forest.  I knew my car was parked on this road but I had no idea if I would have to go 1 mile or 10 miles to get back.

The easy solution would be to back track the six miles.  The easy solution seemed to be the hardest thing for me to do at that point.  The terrain was mountainous, the footing was rocky, and the air was cold.  I ran the road.

Going long for the sake of going long.  My favorite thing about running is the goal-less nature I place upon myself.  I run far because I like it.  I am not competing against any thing, myself included. I do set destinations, distances, time on my feet and experiences that I wish to enjoy. However there is no failure point. I run because it feels good (when it’s not hurting me). Some call this the Zen of running; for me it’s just enjoying the run.

Yesterday I was fighting the fear of the unknown distance that I would cover.  Lost on a long road to nowhere.  That’s what it felt like.  I told myself that I would run to the music of one cd. At the end of the music if I was not at my car I would start to worry.  I ran to the music of Bruce Springsteen’s new album “Wrecking ball”, an american roots, gospel-filled album with stories of the working man to keep me company as I ran down the road to nowhere.  When the last song, “American Land”, ended I was runnung into the parking lot.

Dumb luck, good fortune or guided by angels...I do not care about the what or the why of how I made it back on this journey; it was just the journey of doing.

Later on that evening I sat in a room listening to a speaker give a talk on death.  The lecturer said “Deep spiritual healing takes place at the time of death.” This got me thinking about the many small death and re-birth moments we all share, daily at times. How running destroys the muscles only to re-grow them stronger with each run.

We go long for the sake of going long...it’s the only destination we all share.

Enjoy the run.

p.s. The photo above are my new running shoes, Luna Sandals. I hope to have them broken in to run the PGH 1/2 marathon in!  

Updates, Running & Life

The mild Pittsburgh Winter has passed and a warm sunny Spring has sprouted.  Flowers bud in my front yard, birds chirp and kids ride their bikes that have been sitting dormant since the holiday. 

Running season is back; no more treadmill work outs for me.  I'm back in the woods. Running the trails and being chased by a flock of wild turkeys. OK...maybe not chased: I accidentally ran through a flock (or gaggle) of turkey on the trail and the turkeys weren't sure to flee or attack...I ran fast that day.

Last fall I decided that running was going to be a major part of my health and how I would do my advocacy work. My first major race of the year will be the Pittsburgh 1/2 marathon on May 6th.  It looks as if I will have a t-shirt designed and printed by folks who also have a NMO.  It will be a special feeling for me to wear a t-shirt that represents the people and the cause that I am running for.

It has been about three weeks since I wrote my “Radical Reversal” blog post.  Since then I have not written publicly because of my need to digest the feedback that I was getting from the post.  Also, I have not written due to the fact that I have been taking lots and lots of photos. More to come on the photos...good stuff!

The feedback I received from my post was split down the middle...I was either placed on a pedestal or I was knocked off my pedestal. Either place that I was put, I deserved neither the praise nor the put down.  With that said, thank you to all who took the time to write to me, it was appreciated.

Connect and collaborate.....

Radical Reversal: The History of my Future.

I remember sitting in the neuro office surrounded by three doctors, all kind middle-aged men with the best of intentions for what laid before me.

Keep walking as long as you can without the aid of a cain.  Keep playing guitar as long as your right hand permits you. Keep taking photographs as long as your vision is intact.  Every sentence would start and end with an expiration date.

I would stand up, thank them, shake their hands and walk out in to the waiting room. A nurse would hand me a stack of medication literature as if I was planning a vacation. The info would be cleanly packaged in different bags with DVDs, pamphlets and books all courtesy of some drug company.  Believe it or not (believe it) I received junk mail from drug companies before my doctors gave me my diagnosis. There must be some kind of magical line between God and drug companies that sick people and doctors do not know about.

I would, many times, walk out of the doctor’s office and down that long hall to take that long elevator ride down to the sidewalk where I would make that phone call to my wife that would be a conversation with longer periods of silence than either one of us could take.

Living with a chronic disease there is never much hope of a happy ending.  You go home and read list after list on what the times to come will be.  It is hard to avoid the self-fulfilling prophecy that comes from reading the internet.  Everyone will tell you...do not self-diagnose yourself on the internet, nothing good can come from this...that is true.  When the diagnosis has been handed to you by three middle-aged men on a Monday afternoon it’s hard not to seek out what lies ahead. Words like “expectations”, “chances”, “prospective”, “subsequent” and “to come” fill up volumes of novels in my head. 

There was never the hope that I would walk without the aid of a cain.  There was never the hope that I would be able to play guitar or take photographs well into my old age.  There was never hope that I would not lose my vision or my balance or my bowels or my memory.  There it was listed, everywhere, every piece of medical propaganda, every Google search all laden with lists of what was to come. I was overloaded; a pile-high of symptoms to look for. So I did.

I no longer got tired; I got fatigued. I no longer had forgetful moments; I had memory losses.  The bowels, thank God, never became a problem. I no longer got colds or flus; I got flare-ups, exacerbations and unpredictable relapses.  Everyday medicine would become ineffective and I would get my body filled with bags of steroids.

Medicine would become surreal to me...as if my body had a steroid deficiency. Is this what my body needs?

Never did I plan for success, never did I plan to live well with a chronic disease, never did I plan on dying of old age and passing gracefully in my sleep. 

Never did I plan on having a radical reversal of my symptoms until the day that I did.

As I write this it has been six months since I told the world that I have been living with a chronic disease (you can read about it here). I am at the start of my seventh year of living with Neuromyelitis Optica (NMO).  A disease that I will never be able to spell….

This is my journey towards a radical reversal.

When I was diagnosed I was convinced that everything I loved was being taken away from me one-by-one. First my legs would go numb, weak and tingling as if they were permanently asleep taking away my love of walking through the woods. Next my right hand would go numb, stiff, clinching into a fist taking away my ability to playing guitar.  Then my vision would go in my left eye, fearing my right eye would go soon taking away  my livelihood of taking photos, not to mention the overwhelming fear of not seeing my daughter grow up or to enjoy a smile from my wife.  Then the left side of my mid-section of my chest would go numb causing muscle weakness taking away range of motion to practice yoga (my personal workout of choice).  To end the list of “Poor Me” is the electrical shocks that will randomly attack me by zapping me out of restful sleeps (and right out of any chair I happen to be sitting in at the moment).  

The reason that I am sharing my story with you is because there are very few success stories out there for people living with a chronic disease.  My intention is that you will share this will everybody.  When finding a success story it is usually attached to some snake-oil sales pitch.  Buy this, take that, place this trinket on your head, travel to this island for special treatment...the hope is always a giant leap of faith, money and a lifetime away. It is always directed at the desperate needing for you to have to place your faith in somebody else, which turns out more times that not to be a scam. This is not about purchasing! It’s about doing!

When I chose to no longer be guided by the prophecy listed in the medical propaganda, when I chose to no longer look for “what to expect” ghost symptoms in my life got better….

I began to observe my story, to observe myself, to discover that I am not a disease or a symptom. I observed what is true and no longer identified myself as having a disease.  That was a breakthrough moment when I could say:

“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.”

Today I not only walk without the aid of cain but I run, and run far.  I have a new love for trail running, my enjoyment of the woods is back.

Today I not only play guitar but I play better than ever. It does hurt to hold a guitar pick so I switched to  a picking-style that I enjoy more than my previous years of playing.

Today I daily see my beautiful wife and daughter and not only am I taking photographs but I am creating the best work of my life (so far). 

Too often I would read about NMO and feel fated by what was to come.  All too often I would not even attempt trying something new because I have been vaguely pre-warned that people with chronic illnesses should not attempt this.

A breakthrough example that I recently experienced was about heat. Heat can cause exacerbations, I have read this many times, so for the past years I have avoided getting overheated. You want to know what I discovered by avoiding heat? I am cold all the time.

A month ago I said F-it I’m going to try a Hot-Yoga class...in my mind I convinced myself that I would have a flare up, causing harm to myself, but guess what? I was fine, it felt great and 30 days later I am warm and well stretched out.  I’m not advocating that everybody with a chronic disease try hot yoga, but I am advocating knowing your own body and with caution trying something new.  Do not let your life be guided by a list on a website or a medical pamphlet. I do not wish to debunk the lists of lists that are written out there; the information is helpful.  I do wish to debunk the notion that you can not try something new due to the fact that it is listed under the heading of your disease.

That brings me to my lesson learned: Do not give up on being human. Do not hand your health over 100% to your doctor; take an integrated approach to your life. Our bodies are not suffering from deficiency in medicine. We may need medicine at times but it’s not what we need consistently. Our bodies are deficient because we gave up on living and being human. Disease is only a symptom, the body is a mirror of how we live.  The body speaks to us, learn to listen to the whispers.

Until we desire to discover how to be human again, until we observe that the label of disease is not who or what we are, when we identify the whole of who we are…..then we will begin to heal in body, in mind and in soul.

So here is my sank-oil sales pitch to you: go for a walk, create something new, share it, eat food (mostly plants), say a prayer, remember how to be human, again, as you did as a child.

Ask yourself this: Who am I? What is true? Can I identify myself as not having this disease? Question your fears….What if I….

My radical reversal is in my action, thoughts and intentions. I radically reversed how I think about who I am.  I radically reversed the fear of living with NMO. It’s a shadow that I carry with me but it is not me.  NMO no longer feels familiar for me to identify with. 

As of writing this none of my physical symptoms have gone away (yet) but I feel confident that this is just the beginning of my journey….and that feels good.   

Branching Out

The best thing about living well with a chronic disease is perspective. For much of the past six months I have been writing about what it’s like to be healthy with a chronic disease; to have an illness without a cure but not being sick or sickly. I can credit it all to the notion of branching out and doing something new. 

I drink my cup of green tea as I write down a list of things that I am branching out into: hot yoga, kale smoothie, saying no, trail running, not letting myself be taken advantage of, taking the time to watch the falling snow, feeling sad when it's needed, feeling human all the time.

Mid February is a great time of year.  It's the time that we either give up on our New Year's resolution or it's the time that we branch out and commit to the practice.

In Zen there is the expression “empty mirror”: when you see no reflection you have reached enlightenment (or you're a vampire). After reading that it struck me how rarely we notice who is in the mirror.  We see the detail and imperfections reflecting back at ourselves but do we recognize the person? Do you ever feel like you are wearing somebody else's body; you recognize the clothes but the face is a mystery that you can’t place a name too?

When we start branching out we begin to see ourselves. For many of us it is the first time in years or ever that we notice who is in the reflection.

I think the reason why we do not notice our own reflection is due to the fact that we do not branch out in life.  To often we get caught up living in the hamster wheel of life doing loop-tee-loop laps.

Take a hiatus, branch out into something new, go fail at something new. It's ok, have fun.

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.