A Beautifully-Brief Life

On the afternoon of Saturday, June 4th, I had the chance to know a friend I had never met before.  Unfortunately, we finally became acquainted when it came time to perform a eulogy at his funeral.  I did not have a chance to know him or help when he needed the most support.

It is no secret in his community or on his mother’s blog that James Ryo Kiyan’s death was self-inflicted.  I did not press for specific details, but will only say that he went off into the woods in the Shenandoah Mountains.  If there is anything comforting to say about this situation…Ryo made this decision while surrounded by the beauty of nature.  He felt safe in a world unfettered by the misunderstandings and irrational fear that often comes from living on the autism spectrum.

I remarked in my eulogy that Ryo was a man who did not receive too many breaks during his brief life, but did the absolute best with his challenges.  There were plenty of unfortunate circumstances contributing toward his decision to give up forever and damage the souls of those who care about him.  But there was one in particular that probably did the worst damage.

Navigating the world with Asperger’s syndrome is like walking on eggshells laced with poison.  Those with the “mildest” form of the condition face the most severe challenges because people don’t identify them as having a disability.  Therefore, the uneducated often react with contempt and/or irrational fear.  It also does not help that these incredible individuals lack the awareness of social boundaries in almost every single environment.  It never gets easier.  And it never will get easier…ever.  The only thing that gets easier is the fear of consequences after having faced them again and again.  Or overanalyzing behavior to figure out how to give oneself a fighting chance.  I have learned how to “back off” in reasonable increments of time to walk the fine line of benign persistence and full-blown stalking.  In my opinion, I also have the right to send elaborate birthday cards to obscure acquaintances because I mean well.  But after a few terrible experiences I have started writing at the end of the card, “I have Asperger’s syndrome and sending cards to acquaintances is how I choose to communicate with people.  If this makes you uncomfortable then that is fine.  But I really have to hear it from you.”  I am unable to let go or change my flamboyant eccentricities.  I am able to compromise and occasionally compromise on the original compromise.  Maybe if Ryo had learned some of these strategies then he would have had more of a chance to survive.  We sat in those pews knowing it could have been different.

Ryo developed a strong infatuation with one of his attractive, single coworkers at the Sullivan County Division of Planning & Environmental Management.  They even spent time having lunch at an Inn and relaxed in her apartment.  Even with Asperger’s syndrome, Ryo probably understood this connection would probably not graduate to a romantic one.  But he wanted to hang on for dear life to the morsel of friendship that did exist.  The woman just wanted to keep things professional and the innocuous crush felt perturbing.

The inability to let go can function as both an invaluable asset and ultimate destructor.  In my eulogy, I mentioned, “When something was broken…Ryo wanted to fix it.”  He wanted to fix the misunderstandings and show the woman there was nothing to fear.  The harder he pushed…the more fiercely she pushed away.  Ryo also suffered from cancer, which drained whatever energy he had left.  His essence will live on in our crusade for mercy and common sense.

It pleases me that everyone enjoyed the eulogy and I had a wonderful day with his incredible family.  I hope this is the final eulogy I’ll ever have to give at this type of funeral.  Please check out the blog of Ryo’s mother, Caroline Crane via the link: http://carolinecrane.wordpress.com/ I won’t let this go and neither should you as we dignify Ryo’s unfortunate choice with action.

My Eulogy for James Ryo Kiyan – A Brilliant Man with Asperger’s Syndrome

Thank you ladies and gentlemen for allowing me to speak here today.  I have not delivered too many eulogies in my life and this one is probably going to be the hardest I’ll ever had to perform.  I did not have the privilege of knowing this incredible man who left our hearts and souls prematurely.  Our physical paths crossed too briefly when we both attended a barbeque last summer at the home of a mutual friend named, Kate Palmer.  But from learning about him through the blog entries of his mother, Caroline Crane, and seeing all the people who have come to honor him today…I desperately wish there was an opportunity to turn back the clock and reach out to him.  Especially if I had known the level of anguish he was battling.  I have heard enough wonderful things about him to speak at this service honoring his contributions, stunted potential, and friendships that were cultivated with all of you.   

Despite being blessed with the support of his incredible mother, Caroline Crane, many of you in he congregation, Ryo was someone who did not receive too many “breaks” in his life, but seemed to do the absolute best he could with his social challenges.  As most of you already know, these challenges revolved around an undiagnosed case of Asperger’s syndrome or mild autism.  Yet he persisted with the passion of an underdog in a constant search for mercy in a world that often treated him like a square peg grindings its way into a round hole.  A world that reacted with fear and ignorance when that was easier than giving him the benefit of the doubt.   But for most of his life, Ryo never gave up, which is one of the factors that probably exacerbated his misery.  When something was broken…he wanted to try and fix it.  When a misunderstanding occurred, he attempted to resolve it.  When there were unanswered questions…he fought for closure.  When someone was afraid of his benign eccentricities…he put all his energy into helping them absolve that fear.  His determined soul was not built for a society that often preferred to give up in favor of what is easiest.   

Ryo never stopped looking for a community to would show unconditional acceptance or at least differentiate between Asperger’s syndrome & malicious behavior.  Even if this meant moving across the country in search for a better life in Los Angeles, Ryo took these actions and more. Ryo was a survivor in both the metaphorical and literal sense of the word.  Even during the grueling, six month regimen of chemotherapy to treat his bout with colon cancer, he refused to give up on work and life.  As his mother, Caroline, wrote in a recent blog entry, Rather than be dependant, he asked the oncologist to go easy on whatever sedative they added to lessen the discomfort. He wanted to stay awake both for driving and for work. His fellow staff members knew he was being treated, but only one, who had been through it himself, really understood the physical and emotional toll.

There were several factors contributing to Ryo’s unfortunate choice, although it is not fair to blame specific individuals for his departure.  But what I do know is things could have, would have, and should have been resolved with a semblance of dialogue and additional compassion.  I will not let this go and hopefully you won’t either as we search for answers and most important…prevention of future tragedies.   Ryo is someone who I would have liked to know better and he could have made a profound difference in my life. The irrational fear and constant misunderstandings that plagued his life are something I can relate to because we share the same diagnosis.  I can also empathize with the feelings of profound helplessness and sometimes wanting to give up in the worst way possible.  Ryo is definitely a man I would have wanted in my life who could have offered hope during dark periods.  In return, I would have done my best to return the favor.  Let the Ryo’s of today and tomorrow know there is an entire congregation of individuals who care about them and will help them fight for ourselves.

Jumping of the Face of the Earth into Mercy

When we are young…the new adventures in life seem much more potent.  Driving has become something of a reflex for me, but I still remember the thrill of driving alone for the first time with a new license.  It was raw and exciting.  I also maintain those memories of traveling Europe on my own during a vacation from a study abroad program in Bath, England.  There is one thrill I have not yet experienced and it is the exhilaration of a lifetime.  Skydiving!!

Another one of my flamboyant ideas has been forming nonstop.  I would desperately like to go skydiving this summer and film an anti-bullying campaign.  The theme will be to plunge off the face of the earth into a cushion of understanding and mercy.  Let’s start off the 2011-2012 school year on a thrilling note.

My family has been pressuring me to suspend the jump until the end of summer when I initially was planning on doing it in a few weeks.  In my opinion, bullying does not take a vacation even when school does.  The torment I sometimes endured over the summer in Day Camp was just an extension of the school year.  But I definitely want the video to make as much of an impact as possible.  My family is not always right and sometimes their guidance is abominable.  They could be right about this one, however.

In accordance with my fantasies…I would like the entire community to wait at the ground when I descend from the heavens.  They will be holding up signs and chanting anti-bullying slogans.  The theme of this video will be the same as the speech filmed at Arlington Middle School last November.  Someday Has to Be Today. Until someone can dangle a crystal ball over someone’s head and predict the definite future, someday is not good enough!  Things did not get much better for me until my book was published in 2010.  Nobody should be forced to go through the extremes I went through in order to earn respect from society.

My previous attempts to promote the anti-bullying campaign have not worked as well as I have hoped.  Maybe things will turn for the better with this new stunt and it is going to circulate like wildfire.  How does a YouTube video even become popular?  I mean…some of them are just so silly like the one with the two girls singing the Justin Bieber as their weird father is dancing in the background.   If the public does not pay attention to a man with autism jumping out of a perfectly functional plane then perhaps nothing will ever work!

Come join me around August 15th, 2011 and launch off the 2011-2012 school year before it begins.  The right way!  It feels good to have such profound support from the community and this is going to be their video, too.  Have a great summer and hope you have goals to keep you occupied.  As for me, I will spend the entire summer working diligently on my second book, which will be titled, Transitioning to Success.  It is going to focus on the often-brutal transition from childhood to full-blown adulthood.  The writing process will grow much easier because I always have so much more energy during the summer months.

I always want to fill up the whole page when writing a new blog entry so I will try to fill in the rest with nonsense.  Sooo….have any of you dared to wade into your frigid pools for the unofficial start of summer.  Rejoice in the summer and know that bullying will not take a vacation even when school does.  I will work hard to make sure your kids have a better chance of earning mercy and acceptance when they say goodbye to their beautiful summer.

Meeting the Great One!

Three days ago, on the evening of Tuesday, May 24th, I had the privilege of meeting Dr. Temple Grandin at the annual Benefit for the Global and Regional Asperger Syndrome Partnership (GRASP), Inc. in New York City.  For those blog viewers who do not know who she is…Dr. Grandin is the most famous individual with autism in the entire world!

It was disappointing to meet Dr. Grandin only because I expected too much.  Dr. Grandin was neither rude or gregarious when she spoke with me and a few others.  My soul split in two when she did not remember reading my book and calling up my editor to rave about my writing.  She did not remember how much her endorsement of, “Brilliant creative writing.  His next book should be a novel” meant to me during the early stages of my writing career.  It is easy to go into the experience and forget that Dr. Grandin is still burdened by the realities of autism.  Social situations will always be cumbersome and perhaps this was a difficult night.  I was able to give her a break and not take it personally, however.  Like the rest of the world, I judged her on accomplishments and intentions as opposed to whether she chose to be the life of the party that particular night.

We walked around the William Bennett Gallery admiring the beautiful artwork and struggling to mingle.  It felt great to meet at least a few people who have found their place in the world as individuals on the autism spectrum.  They were at least employed and not miserable like I have been in the past.  Dr. Grandin’s caliber and the joyous atmosphere did not reflect on the common, sad realities faced by so many of my peers.

It is important to keep in mind that most individuals on the autism spectrum do not have HBO movies and/or books on their resume.  Like Dr. Grandin, people have been judging me on my accomplishments as opposed to the benign weirdness that has provoked society to crucify me in the past.  Most individuals on the autism spectrum fail to receive the “break” they deserve.  It is not fair and is not part of life.  It is a living nightmare.

Hard work and perseverance definitely make a huge difference.  But success will never transpire unless society takes the time to recognize those talents that have allowed Dr. Grandin to have a chance and eventually achieve the celebrity status only reserved for a minute percentage of the population.  I am trying to build on the celebrity status that has been created by Atypical:  Life with Asperger’s in 20 1/3 Chapters.  My next accomplishment will hopefully be to date Jennifer Love Hewitt in the precious span of time she is single.  I will happily be a pioneer to show the world that beautiful women do exist who will take a romantic interest in men who will always be square pegs grinding their way into a round hole.  On that note, Dr. Temple Grandin was presented with the “Distinguished Spectrumite Award.”  Her award was a round peg drilled inside a square hole.  We must sometimes revise the way we look at things and judge how individuals fit into society.  There is nothing more pathetic than talent that is squandered because of a few personality quirks like the ones Dr. Grandin exhibited all night long.

It was easy to take it personally when Dr. Grandin did not seem interested in conversing with me and looked straight ahead.  This was not the public orator I saw at Ulster Community College who was forcing herself to perform in front of many hundreds of people.  But this is autism and it will continue to shine even throughout the most phenomenal successes. She was gracious, however, when I requested a photograph with her and gave me her contact information.  So many public figures would not have done this and those who care about individuals on the autism spectrum will recognize these redeeming qualities.  Anything less will result in doomed first impressions and stillborn chances for these unique individuals…

Gaining toward Doom…

I look down at my protruding stomach and wonder what has become of me?  How did I reach this level of physical decay and when did it begin?  It could have been the months I spent sitting at my computer answering an endless succession of e-mails.  Naturally, I had to sustain my energy via energy beverages and caffeine.  Stimulants only stimulate more lethargy and not metabolism.  Red Bulls are the veritable kiss of death.  I should have just mixed water with copious amounts of sugar and it would have had the same detrimental effect.

When I do lose the weight…I plan to treat every subsequent day like I’m trapped in a mine very slowly filling with toxic gas.  It will kill me, but not for a long time.  There will be no dead canary to give fair warning, too.  I will just look in the mirror and realize it has happened.  The tenacious cycle of trying to take it off again will begin.  Even when I succeed with my goal there will be no end.  We lose weight with the ridiculous illusion that it is gone forever.

I have increased my suffering by constantly raging against reality and preferring to be a square peg that grinds its way into a round hole.  If I do not belong someplace then I want to belong even more.  Perhaps this is why I have always done so well with endeavors like, “The Appalachian Trail.”  As brutal as such tasks may have been, I was always guaranteed success as long as I never gave up.  It is nice to have something profound to fight for and something that will guarantee more self-respect.  Respect for myself and perhaps from the public.

The reason I take on these challenges is partially out of desperation for acceptance in the neurotypical world.  Others need to see the efforts of individuals with Asperger’s syndrome and delegate mercy when mercy is due.  In reality, I am painfully aware that I do not often have control over whether someone shows tolerance and/or gives me a chance.  As long as someone’s actions are not illegal…they have the liberty to treat me with blind contempt.  But I will exercise and make an effort to take care of myself.  This will guarantee success and physiology will show me the compassion that does not always come from other people.

I will try to lose the weight by the start of summer and emerge when the beautiful weather is still in its infancy.  I need to hear those compliments once again.  “You look good…you look good.”   I remember what happened when I did lose about fifteen pounds.  For the first time in about four years I had my first online date who was actually interested in spending time with me after the first outing.  Effort always makes a difference and will buffer some of the realities those with Asperger’s will face in an often-unfair world.

This is why individuals with Asperger syndrome excel in unlikely venues.  They have control over their tenacious persistence and will push their limits.  I hope they will understand that punctuality, integrity, and honesty do make a difference in whether they are given a chance by the public.  It is even more important, however, to show themselves mercy when the rejection is out of their control.  Especially when it is coming from the incurably ignorant.

I now weigh at least two hundred pounds…AGAIN!  My weight hit that milestone a few years ago and my maternal grandmother witnessed this travesty when she saw me in a bathing suit in Delray Beach, Florida.  Her aghast mouth dropped open, but she did say I would lose it with the same determination I used to complete the Appalachian Trail as well as other endeavors.

Let us embrace the harbingers of this beautiful weather and celebrate the reality that this unusually-brutal winter in finally in the past.  Celebrate the pursuit of your own goals and know that the moment you start something is when you start to become successful at it!!