Venue: Jay Verno Studio
Additional Photos (here) & (here)
5.31.2012
5.30.2012
Moment
Current Reading: Wild by Cheryl Strayed
Current Music: Chimes of Freedom: The Songs of Bob Dylan
Sounds: Jazz guitar chords
Mood: Compassion and mercy
Smells: Coffee
Temperate: 79 degrees
Thought: Give thanks to the morning light, because some did not make it though the dark.
Current Music: Chimes of Freedom: The Songs of Bob Dylan
Sounds: Jazz guitar chords
Mood: Compassion and mercy
Smells: Coffee
Temperate: 79 degrees
Thought: Give thanks to the morning light, because some did not make it though the dark.
5.29.2012
5.21.2012
5.17.2012
5.16.2012
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
Thank you for your kind and generous donation! Your gift directly supports the innovative scientific research of scientists who are working to find solutions for Neuromyelitis Optica (NMO) Spectrum Disease. Only through this website, 100% of your donation goes directly to science research. The Guthy-Jackson Foundation does not allocate any donated monies to administrative support of the Foundation. Once your contribution has been processed you will receive a thank you letter in the mail that you can use as a tax receipt. The Guthy-Jackson Charitable Foundation for NMO is a non-profit 501(c)(3) organization Tax ID # 26-6461545.
Please click the Donate button that will direct you to PayPal to complete the donation 100% of your donation truly goes towards NMO research. We even reimburse the small service fee that PayPal takes out of every donation through the site thus ensuring that we maintain 100% going towards research.
Thank you for your kind and generous donation! Your gift directly supports the innovative scientific research of scientists who are working to find solutions for Neuromyelitis Optica (NMO) Spectrum Disease. Only through this website, 100% of your donation goes directly to science research. The Guthy-Jackson Foundation does not allocate any donated monies to administrative support of the Foundation. Once your contribution has been processed you will receive a thank you letter in the mail that you can use as a tax receipt. The Guthy-Jackson Charitable Foundation for NMO is a non-profit 501(c)(3) organization Tax ID # 26-6461545.
Please click the Donate button that will direct you to PayPal to complete the donation 100% of your donation truly goes towards NMO research. We even reimburse the small service fee that PayPal takes out of every donation through the site thus ensuring that we maintain 100% going towards research.
5.14.2012
Moment
Current Reading: Need, Speed & Greed by Vijay Vaitheeswaran
The Information Diet by Clay Johnson
Current Music: Underwater Sunshine by Counting Crows
Sounds: Music, typing fingers, street construction
Mood: Happy
Smells: Coffee & toast
Temperate: 56 degrees
Thought: You do not need a cure to be healed...become a POSSIBILITARIAN!
The Information Diet by Clay Johnson
Current Music: Underwater Sunshine by Counting Crows
Sounds: Music, typing fingers, street construction
Mood: Happy
Smells: Coffee & toast
Temperate: 56 degrees
Thought: You do not need a cure to be healed...become a POSSIBILITARIAN!
5.10.2012
Do Not Give Up On Being Human ~ Published over at Future Design Studio
Do Not Give Up On Being Human (Future Design Studio has published this article of mine...)
Be sure to take the time to enjoy all Future Design Studio has to offer)
Encore ~ An additional performance…
How often in life are we asked to perform an encore? Wouldn’t that be a grand experience; to stand in front of an audience as they cheered you on for just one more.
In life, additional performances do not start with a roaring crowd begging for more. All too often, it starts with the silence of a loss….the loss of something, be it a career, relationship or your health. Do not expect applause.
Second act starts in silence. The curtains open and we stand in front of the silent crowd. The audience waiting for us to act; it is a scary moment when life asks us to perform. Insurmountable fear of where we must go next in life fills our entire being.
However, life is full of do-overs. We fall, we get up. It’s all part of the process of being human. Being human seems to be second nature to us, centrally not something that needs to be learned or experienced. Yet, as we age we forget how.
As babies we crawl by instinct, we walk by instinct, we dance to the music by instinct, we are motivated by a mother’s hug and a father’s smile. We knew how to be human by instinct, until the day that we forgot.
I spend a lot of time thinking about the notion of what it means to be human and how many of us forgot what it means to be human.
For the majority of us life’s second act will start after a loss and in the utter silence of our own mind. If feels as if we were cast in a play titled “Life” starring us and everybody has a script but you.
We watch the play of Life move scene by scene in front of us as we scramble to find the right words for our part in this play.
Maddening...mental hurdles trip us up on every step of the path leading us toward impenetrable problems.
The ancient Egyptians use the words “life” and “live” interchangeably to mean “reaching fulfillment to enter heaven”, thus giving us an understanding of why the notion of reincarnation never went away. We seek the hope of an encore even in death.
I imagine that if we understood death then all the small deaths in life’s journey would be easier to navigate our way through.
I surmise that we need to remember how to be human again; we need lessons on understanding death...the dreadful experience that will be the final scene in our play of Life.
Too often, lives are spent in fear and avoidance of this natural process that we all must experience. This fear and avoidance seeps into every pore of our life, in turn creating a life of avoiding this brief moment of “the here & now “.
As expecting parents we go to classes about birth and child rearing and we take these classes before that bundle of tenacious-maddening-joy is placed in our arms.
Why not classes on death? We all experience this final ending. We need to be taught.
If I was to teach a class about death, it would start off like a grand motivational speech in front of hundreds as if I were on Oprah’s Life Class or a PBS special. I would stand at over six feet tall and have extremely white teeth, for some reason to have any success as a motivation speaker you must be at least 6’ 5” with blinding white teeth.
I would open the class by repeating the phrase “Do Not Give Up On Being Human”. “Do Not Give Up On Being Human”. “Do Not Give Up On Being Human”…..I would have the audience chanting these words back at me. Tribal drum beats would start off low in the background erupting into an ever-growing cadence to enhance the importance of these words. A light show of red, purple and white would flash over the audience to generate a show that could only be compared to the aurora borealis lights of the great white north.
I would walk out on the stage waving my arms in the air telling the crown to get on up, get out of their seats. I would evoke the spirit of James Brown to capture and enthrall the crowd. It would be speculator!
I would walk to the center of the stage to give my homily on death.…
What is human? My answer is to create...anything.
That is our purpose: to create. I love the story of creationism vs. evolution. My favorite part is that we, humanity, were placed here last. After all the fruit was placed on the trees and the vegetables had grown out the ground, after the clean water ran down hill from the mountain tops, Earth-Gaia-God gave us life, human-life.
We have de-conditioned ourselves from discovering our purpose and living our calling. Dreaming out loud and dreaming quietly to ourselves has been crushed by culture, community and the boxes of time we live in. Life has been divided up into the many boxes of time: work time, family time, personal time, relationship time, running around time. There is no time left to “Do The Work”. To live our purpose and to find our calling you have to put in the work.
Today I give to you an additional performance on the 10 Commandments:
Commandment 1. Do not give up on being
Commandment 2. Do not let the machine think for you.
Commandment 3. Do not concern yourself with the results, concern yourself with the process.
Commandment 4. It’s OK to fail...fail often, fail forward, enjoy the failure.
Commandment 5. Living your purpose is living your calling.
Commandment 6. Do as little harm as possible and be aware of the harm that you do.
Commandment 7. Life is a True-Metaphor.
Commandment 8. Create something new, daily.
Commandment 9. Share.
Commandment 10. There is no #10... It’s up to you.
In the end death is nothing special. It’s not seeking you out or awaiting your arrival; it’s simply the natural process of reaching fulfillment to enter heaven.
Getting good at death is the best preparation for living a full life: to be prepared for your additional performance that all of us will experience … be it a career, relationship or your health
Enjoy your ENCORE!!!
Be sure to take the time to enjoy all Future Design Studio has to offer)
Encore ~ An additional performance…
How often in life are we asked to perform an encore? Wouldn’t that be a grand experience; to stand in front of an audience as they cheered you on for just one more.
In life, additional performances do not start with a roaring crowd begging for more. All too often, it starts with the silence of a loss….the loss of something, be it a career, relationship or your health. Do not expect applause.
Second act starts in silence. The curtains open and we stand in front of the silent crowd. The audience waiting for us to act; it is a scary moment when life asks us to perform. Insurmountable fear of where we must go next in life fills our entire being.
However, life is full of do-overs. We fall, we get up. It’s all part of the process of being human. Being human seems to be second nature to us, centrally not something that needs to be learned or experienced. Yet, as we age we forget how.
As babies we crawl by instinct, we walk by instinct, we dance to the music by instinct, we are motivated by a mother’s hug and a father’s smile. We knew how to be human by instinct, until the day that we forgot.
I spend a lot of time thinking about the notion of what it means to be human and how many of us forgot what it means to be human.
For the majority of us life’s second act will start after a loss and in the utter silence of our own mind. If feels as if we were cast in a play titled “Life” starring us and everybody has a script but you.
We watch the play of Life move scene by scene in front of us as we scramble to find the right words for our part in this play.
Maddening...mental hurdles trip us up on every step of the path leading us toward impenetrable problems.
The ancient Egyptians use the words “life” and “live” interchangeably to mean “reaching fulfillment to enter heaven”, thus giving us an understanding of why the notion of reincarnation never went away. We seek the hope of an encore even in death.
I imagine that if we understood death then all the small deaths in life’s journey would be easier to navigate our way through.
I surmise that we need to remember how to be human again; we need lessons on understanding death...the dreadful experience that will be the final scene in our play of Life.
Too often, lives are spent in fear and avoidance of this natural process that we all must experience. This fear and avoidance seeps into every pore of our life, in turn creating a life of avoiding this brief moment of “the here & now “.
As expecting parents we go to classes about birth and child rearing and we take these classes before that bundle of tenacious-maddening-joy is placed in our arms.
Why not classes on death? We all experience this final ending. We need to be taught.
If I was to teach a class about death, it would start off like a grand motivational speech in front of hundreds as if I were on Oprah’s Life Class or a PBS special. I would stand at over six feet tall and have extremely white teeth, for some reason to have any success as a motivation speaker you must be at least 6’ 5” with blinding white teeth.
I would open the class by repeating the phrase “Do Not Give Up On Being Human”. “Do Not Give Up On Being Human”. “Do Not Give Up On Being Human”…..I would have the audience chanting these words back at me. Tribal drum beats would start off low in the background erupting into an ever-growing cadence to enhance the importance of these words. A light show of red, purple and white would flash over the audience to generate a show that could only be compared to the aurora borealis lights of the great white north.
I would walk out on the stage waving my arms in the air telling the crown to get on up, get out of their seats. I would evoke the spirit of James Brown to capture and enthrall the crowd. It would be speculator!
I would walk to the center of the stage to give my homily on death.…
What is human? My answer is to create...anything.
That is our purpose: to create. I love the story of creationism vs. evolution. My favorite part is that we, humanity, were placed here last. After all the fruit was placed on the trees and the vegetables had grown out the ground, after the clean water ran down hill from the mountain tops, Earth-Gaia-God gave us life, human-life.
We have de-conditioned ourselves from discovering our purpose and living our calling. Dreaming out loud and dreaming quietly to ourselves has been crushed by culture, community and the boxes of time we live in. Life has been divided up into the many boxes of time: work time, family time, personal time, relationship time, running around time. There is no time left to “Do The Work”. To live our purpose and to find our calling you have to put in the work.
Today I give to you an additional performance on the 10 Commandments:
Commandment 1. Do not give up on being
Commandment 2. Do not let the machine think for you.
Commandment 3. Do not concern yourself with the results, concern yourself with the process.
Commandment 4. It’s OK to fail...fail often, fail forward, enjoy the failure.
Commandment 5. Living your purpose is living your calling.
Commandment 6. Do as little harm as possible and be aware of the harm that you do.
Commandment 7. Life is a True-Metaphor.
Commandment 8. Create something new, daily.
Commandment 9. Share.
Commandment 10. There is no #10... It’s up to you.
In the end death is nothing special. It’s not seeking you out or awaiting your arrival; it’s simply the natural process of reaching fulfillment to enter heaven.
Getting good at death is the best preparation for living a full life: to be prepared for your additional performance that all of us will experience … be it a career, relationship or your health
Enjoy your ENCORE!!!
5.08.2012
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.
5.07.2012
5.02.2012
5.01.2012
Waiting to Order Coffee
Sunday morning starts off with me standing in line at Starbucks.
The person standing in front of me is this offbeat character of the local neighborhood. He sells flowers by walking up down a highway holding bunches of bouquets in his arms. He does this daily during rush hour hoping that someone stopping at the traffic light will purchase one.
He has been doing this for years; never once have I seen him make a sale. Never once have I seen him hand a single flower to anyone. But there he is, five days a week walking up and down the street, arms filled with flowers. Dressed in his flower selling uniform...a Michael Jordan baseball cap with the hat-brim twist to the side of his head. On his feet are new bright white Jordan high top shoes, Jordan T-shirt and Jordan shorts….he must be the envy of every boy in the ninth grade. There he is Monday through Friday: a walking advertisement for everything Michael Jordan. This flower-carrying-Michael-Jordan-hipster does not fit the part; he has to be in his late fifties.
Until I stood behind him in line waiting to order my coffee.
The coffee barista greeted him as a regular already knowing his order. He adds a toasted plain bagel to mix things up. They both smile and giggle about him changing up his daily routine. She asks him where he has been running and he lists off about four or five different 5k’s that he’s run in the past couple of days.
It seems when he is not selling flowers on the highway he spends his time driving to different neighborhoods participating in the local 5k. Today he would be driving about an hour outside the city to run in a charity race. Then he would be surprising his daughter with a drop in visit, something he does rarely.
He grabs his coffee and bagel, next he yells out good morning to the barista behind the counter making the fancy drinks. They smile and yell back “good morning MJ” and out the door MJ walks.
Things you can learn standing in line waiting to order your coffee.
The person standing in front of me is this offbeat character of the local neighborhood. He sells flowers by walking up down a highway holding bunches of bouquets in his arms. He does this daily during rush hour hoping that someone stopping at the traffic light will purchase one.
He has been doing this for years; never once have I seen him make a sale. Never once have I seen him hand a single flower to anyone. But there he is, five days a week walking up and down the street, arms filled with flowers. Dressed in his flower selling uniform...a Michael Jordan baseball cap with the hat-brim twist to the side of his head. On his feet are new bright white Jordan high top shoes, Jordan T-shirt and Jordan shorts….he must be the envy of every boy in the ninth grade. There he is Monday through Friday: a walking advertisement for everything Michael Jordan. This flower-carrying-Michael-Jordan-hipster does not fit the part; he has to be in his late fifties.
Until I stood behind him in line waiting to order my coffee.
The coffee barista greeted him as a regular already knowing his order. He adds a toasted plain bagel to mix things up. They both smile and giggle about him changing up his daily routine. She asks him where he has been running and he lists off about four or five different 5k’s that he’s run in the past couple of days.
It seems when he is not selling flowers on the highway he spends his time driving to different neighborhoods participating in the local 5k. Today he would be driving about an hour outside the city to run in a charity race. Then he would be surprising his daughter with a drop in visit, something he does rarely.
He grabs his coffee and bagel, next he yells out good morning to the barista behind the counter making the fancy drinks. They smile and yell back “good morning MJ” and out the door MJ walks.
Things you can learn standing in line waiting to order your coffee.
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