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.


When did the library get so crowded?

Sunday afternoon I drove to my local library to pick up two books and a cd that were on hold for me. I drove through this small suburban town; a town with sidewalks, small businesses and runners...lots of runners enjoying this sunny mild weather and blue skies February day. 

I pulled into the parking lot and did a couple of loop-tee-loops around the lot to discover that there were no parking spots available.  I turned into the extended lot searching for a spot. Still no luck.  Finally I gave up and parked on the street. The parking meters are debit card friendly, thank God. Who carries spare change anymore? I alway feel bad for people asking for spare change on the street. If they could only come up with a Paypal system for homeless it would be easier to give to these people in need. Instead of giving out a used coffee cup they could hold a swipe machine or better yet maybe an app for direct bank-to-bank transfers. 

I made my way into the library.  This place has been my fortress of solitude for the last ten years; just me and a couple of old men reading the daily newspaper.  Not this day.  This day I walked into a crowded library.  The checkout desk had a line at least six people deep.  The magazine section was filled with browsers. All the computer stations were filled up with patrons.  DVD section was reminiscent of the days when people actually browsed the shelves selectively choosing.  Kids were quietly running around. This place was a mecca of parents and kids, grandparents and grandkids, hipsters, college students, young-biz-start-up-types...it was community culture in action. 

Then it dawned on me why this place was crowded: three big box-bookstores have closed down in this part of town.  If you want to touch a book in this neighborhood you have to go to the library.

My favorite thing about the library is that it is filled with all the knowledge you could ever possibly want.  The library even provides nice people to help you find the stuff that you want.  The best part is the stuff you want is free for the taking. But keep it past three weeks and they will charge you a nickel.

There is even a used bookstore in the basement where you can get last year's bestsellers for two bucks.  All this place needed was a coffee shop to turn it into the holy land!



Makeup & hairy styling by Justine Lyn, owner of Beauty Justified
Flower creations by April Mason, owner of Mocha Rose


Photo of the Week

Happy valentine's day!

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

To download go (HERE)


Weekend After The Super Bowl Photography Workshop

This past Saturday was either my 4th or 5th year of holding my “Weekend After The Super Bowl Photography Workshop”. I have not been good at keeping track.

I never planed out my marketing approach to holding this workshop; I have always picked the weekend after the Super Bowl because, hey, no football on TV. What else is there to do in Pittsburgh on the weekends? 

It appears to be the perfect weekend for holding this workshop so starting next year it will become the…

“Inaugural 6yrs Running 1st Annual Weekend After The Super Bowl Photography Workshop”. 

Catchy isn’t it...

One of the strangest things that I do in this workshop is take the class outside to practice taking photos.  Taking people outside to take photos, not that strange. But taking them out in February, now that's maddeningly insane. Now, for you non-northern people reading this, February in Pittsburgh is cold, crazy Arctic, feel your nose hair, cold. For some stroke of dumb-luck every previous year the workshop has fallen on an unseasonably mild February day. 

This year I made the assumption that my luck would continue.  On account of winter in Pittsburgh this year being non-existent, all I can think of is all the good things that come before the apocalypse of global warming. Do assumptions ever work out for anybody?

I awoke to 3 inches of snow blanketing the roads outside my home. This is not going to be good, I think to myself. To my happiness my good luck continued. C’mon this is Pittsburgh. The class is filled with Pittsburghers. Snow is not a  problem for these people. The class was filled and at 10:15am sharp and we started.

This class was the best ever. Seriously, the best ever.  We have all been in classes or meetings and there is always, and I do mean always, that one person who asks so many dumb questions that is slows the class for everyone else. Well, this class did not have that person, thank God. This class was filled with passionate, motivated, extremely good looking (wink, wink) people interested in discovering the joys of creating a photo.

A recap of the class: we took the journey of a human-centered approach to creating photos (no microwaves, no vending machines...my metaphors are magical).  Then we read our Gospel, which gave us a deeper understanding of the Trinity; it all accumulates with the immaculate reincarnation of a photograph…

In all honesty I can say the class was transfigured by a blinding radiant light from the appearance of the photographs on the back of their cameras…quite blissful if I do say so myself.

Photograph the light
Compose the subject

Just a little reminder about our upcoming March 31, 2012 workshop! Click HERE to register.



Photo of the Week

Lit by moonlight...

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

To download go (HERE) 


Fighting the Anger Inside

Recently I have been having conversations with people asking for permission to “do the work”.

Permission is an odd thing.  We give ourselves permission to take it easy but we have a hard time giving ourselves permission to do the work. 

Permission to sleep in, permission to skip a workout, permission to eat an extra slice of pie, permission to take a day off, permission to not follow up, all easy…..but permission to try something new, permission to take a leap...well that’s where we pause.  All of us.

These conversations happen  1st quarter of every year.  I get invited to have coffee and people ask me questions about photo-biz-life and random stuff. I love every opportunity that I get to have these conversations.  Each one is a teachable moment and life lesson for me. I learn so much, I love it, please keep asking.

Last week we lost a job due to a backhanded nature of a competitive vendor (not a photographer) and we are asking the question: should we take legal action? In our gut with think we would win, easily. But at what cost to us, financially and emotionally?  Do we want the fight? Do we want to be bothered? Do we want the revenge!? Do we want to fight the anger inside?

This is where we find ourselves fighting the fear inside.  It happens to all of us.  Taking the leap. Fighting your own inner voice.

Doing the work and fighting the anger inside; these two concepts go hand in hand in business, art and in life.

“Doing the work” for some people is simply their nature. They simply do.  Doing the work for others is not natural at all.  It’s not that we’re lazy or lacking motivation, it’s that we do not know where/how to start.  We are fighting the anger inside of ourselves about taking action. The idea of taking action and failing is what causes the anger in the first place.  It’s the “why bother” attitude, and that is the answer. If we have a “why bother” attitude then we are not excited nor passionate about the outcome.

Ask yourself “What is the anger inside?” Is it the drudgery of giving yourself permission to fail or is it that the achievement will not be fulfilling?



Current Reading: Here and Now! The Autobiography of Pat Martino
Current Music: Sessions For Robert J. By Eric Clapton
Sounds: Complete silence
Smells: Fresh air
Temperature: 53 degrees
Thoughts: Is corporate culture the only culture left?