Things I think About When You are not Listening ~ Life With NMO

This is what I think about when you are not listening.

I am a highly energetic person who is trapped in a body that is continuously fatigued.   It hurts when I stand, I lose my balance when I walk, I feel normal when I run...until I stop.

My brain sloshes from right to left inside my skull. Always right to left. My vision becomes a jumpy freeze frame as if an old film 35 mm film projector has bounced off track. This experience repeats then fades aways as if the breeze brings relief.

At all times I am alone, even in the company of others.  As if I am a character in a Murakami novel. What bothers me about this surreal state of being is that Murakami characters are always the boring quiet type; why an energetic person relates so well to his writing...I am not sure.

I am the everyday invisible man going on a journey alone. Moving forward on a pilgrimage to the mecca of me. With paths of discovery of how to live with this monster within. I am lost. Incessantly looking within ever so deeply asking myself the same question. The answer never comes...

Constantly watching others look past me trying to see my monster. Pour me another drink and I'll tell you my story. You can nod along and then tell me how good I look. I love this part, for no matter how deep my monster may hide my ego stands up and looks you straight in the eye. I am alone even during conversation...smile, nod, move along.

I should go see a doctor, but I won't. I do not want to be placed back into an MRI tube nor do I wish to have vials and vials of blood taken from my arm. I do not want to hear another kind nurse tell me a sad story about her last patient. I have as of yet to heal from all the previous harm that my past doctor visits has caused to my psyche.  The beat goes on and I turn to the next page.

Russian roulette, preventative medications, kale, bourdon...salvation or purgatory?

Trust me, I am only deep enough to be shallow. A drunk barstool prophet preached those words to me. I will never forget it. This is the truth of me: inwardly I am a scared-pessimist-poor me-take me now Jesus type of person.  Most people that I meet are depressed on the outside, and I question if they are happy on the inside? An odd juxtaposition.

What I miss most in my life is being embraced by reality, for mine is at all times in flux as if I am walking on the cliffs of insanity.

My disease progresses as my health progresses. The seasons change.

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.

Lesson Learned ~ Life with NMO

About a mile and half into the run she asked me, “Daddy, why do you run?” “Because I can.” I tell her.

October 2013 I was supposed to run in my first marathon. February of that same year I had an NMO attack. The attack took away my ability to run, barely leaving me with the ability to walk. October 2013 came and went. My dream of running in the Chicago Marathon faded along with the numbers on the calendar that year. Slowly I rehabbed. I got better as the season changed colors.

September 1, 2014, the unofficial start of autumn, I ran in my first race since my setback.

I say the words to her, "Heart of a servant - strength of fighter. That's what keeps me going. My desire is for you to know that it's possible. That everything is possible. Dream big and do the work." I have always fancied myself as a street philosopher. Here I am preaching to an eight year old little girl who is running simply because she can.

Telling my daughter that I have a disease that was not going away and did not have cure was my biggest fear. Then one day I received a handwritten letter addressed to John & family. The letter was written from a kind woman who herself was raising a son with NMO. The letter was a thank you for the writings I have done on NMO. She went on to express her gratitude for me sharing my journey publicly. The letter filled me with joy and tears. The letter was the bridge (the gift) on how to tell my daughter why daddy got sick for long periods of time.

About a half mile before we cross the finish line my daughter tells me “Let's run for NMO. It's not about winning the race, it's about completing the race.” Yes little one. I pat her little bum and we run until we cross the finish line.

Chicago marathon can wait. This was the best run of my life.

You do not need to be strong enough for whatever life throws at you…..You need to be compassionate enough to be of service to it. Lesson learned.

If you like what you just read and would like to read more I keep an updated page on Medium.com with all my writing on Neuromyelitis Optica. Please share with those who you think will benefits from the writings. 

https://medium.com/@craigphoto/latest

Endurance & Elegance ~ Life with NMO

Your disease is not going away.
What you are about to read is not a cure.
Read on to get better.

Disease is not a living suicide. Society has conditioned us to think that if we have a disease then we must be sick.  It is the biggest obstacle that you will ever face when living with a chronic illness.  A shift in mindset can set you free. Do not be paralyzed by the fear of change.

Aristotle said “We are what we repeatedly do.”

Health is not the absence of disease; good health is defined by what we (you) choose to define as optimal living. If you live in a state of illness and do nothing to improve your wellness then a life of illness is your state of optimal living.

You cannot define health by what it is not. Define health by how you choose to live.

Think about that last sentence. Sit with it. Can you define it? Does it make you mad (mad at me for asking) or mad at the answer you give yourself? Do not deceive yourself. Be life-enhancing; you do not need a special thing to answer the question. The suffering has already been your teacher, coach and mentor.

Get committed and overcome that obstacle (fear, pain, suffering) that is holding you back…that is keeping you from getting out of bed, or off the sofa.  Create a personal practice that keeps you in charge of disease.

Disease is unpredictable. You cannot practice for that, but good health is predictable when you have a good practice in place.

Disease can be a rite-of-passage to transcend the notion of what good health means to you.  For most, good health has become this far off alien thing rather than ideas that is within us at all times.

You know how to suffer.  Life with disease means there will be periods of suffering to endure. The question to ask is “What can I do with my ability to suffer?” Pain from doing something feels a lot better than pain from doing nothing. Life with disease is filled with pain from doing nothing.  Disease-pain arises as a mystery from within us. The body fighting the body and most times the mind is not even invited to the match.

Disease-pain can teach us how to bring purposeful suffering into our lives. Yep, purposeful suffering…most likely voted to be the worst motivational topic of all time. Stay with me. You can now endure more pain than you ever imagined possible. You can handle pain and come out on the other side.

Suffering is an opportunity to improve your condition.  Disease is always on the horizon. You do not have a fix. The only escape is to practice how to endure elegantly. This practice will teach you how to stop hurting yourself and others around you. It will teach you the awareness that you are alive and with that you can cultivate the clarity to be purposeful with your suffering.


Elegance ~ doing something with as few steps as possible.
Endurance ~ living with a disease with as few steps as possible.

What follows is my personal practice for living with a chronic illness. Use mine or create your own.  Whatever you choose be sure to share it with others living with chronic illness.

Plants: Eat plants, lots of them. I am not asking you to go on a diet but I am asking you to change your menu.  In the beginning there was the Garden of Eden, not the chemical laden junk vending machine that only produced disease. Fruits and vegetables create a healthy life, processed foods create disease. Plant-based food is elegant medicine without side effects. Plant-based food only create optimal health. If you want to endure your illness eat plants.

Power: Exercise, move your body. Exercise is an effective drug that treats the whole body. Good health is not achieved with a single step. Taking a pill or giving yourself a daily shot is instant gratification but at what cost? Most people I talk with who live with chronic illness choose not to move because it hurts. This is where purposeful suffering can become your teacher. All that time sitting and suffering with your disease has given you the strength to get up and do anything. So use it, do not let your suffering die in vain. Walk to the mailbox, then to the end of your driveway, then to the end of the block. Try running or biking or swimming or whatever your heart yearns to try. Exercise to compete in your own life. Good things will happen when you put energy into moving your body.

One last thing…get outside.

Prayer: Pray, meditate, yoga, quiet the mind. Create sacred time in your life. Sacred is elegance and endurance in action. Let the mystery of your life talk to you. Stay with that mystery, it will take you where you need to go. 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.

Purpose: No the “why” of why you want to be healthy. To be an example for your children. To be an example for your community.  To enjoy your spouse well into your old age. Life is not complicated when your are honest with yourself.  Be purposeful.

To finish,

I am writing this for myself as a reminder of how I think about optimal health.

Every time I go on a walk, run or bike ride I am carrying the weight of the whole NMO community. Nobody asked this of me. For some reason the weight is there. What I know is if I can live these words and be an example then it will help at least one person to live with optimal health…and carrying that weigh feels great.


Heart of a servant
Strength of a fighter.

John Craig

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 ~ 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.

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!  

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.   

Heart & Strength Interview Series w/ Johnna Swilley-Lewis

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

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

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

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

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

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

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

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

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

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

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

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

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

What is your philosophy on living with Devics/MS?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I never wanted to talk about my illness. Still don’t. I do not want to be a person whose life is defined by the diagnosis of a disease. I want to talk about the lessons learned from living with the disease. These are not lessons on medical advice or tips or tricks to wellness, nor are these suggestions on how to handle side effects from medicine. These are lessons about putting in the effort.

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

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