Afterglow

They told me my son was dead. I knew something must have happened. For days I hadn’t heard from him—no answers to my e-mails, no response to my phone calls. But when they told me he was dead, it didn’t seem real. Even now, almost a year later, it still doesn’t.

We had planned, my daughter and I, that I would move in with her once Ryo found a job and was settled somewhere. She took a week off from work to help me pack. Too fast, I thought. But there seemed no reason for delay. I was in a daze.

Someone needed to write an obituary. I had never been clear who did that sort of thing. Never thought about it. Obits simply appeared. It should be a family member, I supposed. I was the writer in the family. I had read enough obituaries and quickly turned out something trite and cliché-ridden. The following appeared in the Middletown (NY) Times Herald-Record on October 21, 2010.

JAMES RYO KIYAN

March 13, 1962 – October 2, 2010

Wurtsboro, NY

James Ryo Kiyan, beloved son of Caroline Crane and the late Yoshio Kiyabu, passed away on October 2, 2010, in the Shenandoah National Park in Virginia.

 Ryo was born in New York City and attended public schools, including the well-known Stuyvesant High School. At Grinnell College he earned a Bachelor’s degree in American history. After that, he worked in law offices in Chevy Chase, MD, and Los Angeles, CA, until he decided his real interest was in map-making. Returning to New York State, he earned a certificate in Geographic Information Systems technology at Ulster County Community College, then a second Bachelor’s degree in geography at SUNY New Paltz. His first and only job in that field was with the Planning Division of the Sullivan County government. Ryo had a brilliant mind but all his life was socially impaired by Asperger’s syndrome. He tried to make the best of it and kept on working at the most satisfying job he ever had, even through a bout of cancer and six grueling months of chemotherapy. He was successful in his work, and his maps can still be seen in various places in the county. In spite of his efforts, eventually he lost the job and was unable to find another in his field. He had gone to Washington DC to look for work, and died on a camping trip in the mountains of Shenandoah Park.

Ryo had a quirky sense of humor, loved animals, and enjoyed hiking and camping. He was a member of the New York-New Jersey Trail Conference, the Sierra Club, and the Basha Kill Area Association. Besides his mother, he leaves a sister, Laurel, and her husband Joe, of NY; a nephew, Kieran; an uncle, Alan Crane and his wife, Tamara of Silver Spring, MD; three aunts, Harriette Kiyabu of Los Angeles, Allison Crane, of Irvington-on-Hudson, NY, and Frances Crane, of New York City, as well as numerous cousins in Los Angeles, Arizona, Hawaii, and Hungary. He is sadly missed by all. Arrangements for cremation are through the Baker-Post Funeral Home of Manassas, VA. A memorial service will be held at a later time. In lieu of flowers, contributions may be made in Ryo’s name to the Minnewaska State Park Preserve.

 Letters, phone calls, and e-mails poured in. If only Ryo had known how many people appreciated him, it might, at least in part, have made up for Sullivan County’s lack of compassion and understanding. When informed of what happened to him, a former girlfriend from Grinnell wrote:

At Grinnell he was considered eccentric (but that was a badge of honor at a place like Grinnell!), but a very good and nice guy and certainly no woman was ever afraid of him. My family enjoyed him. If I may be so bold, he had several very good, intelligent, balanced and capable girlfriends for fairly long term relations (I think we were together for 18 months, he and Pam for a year?). I only wish he would have called myself or Laura Davis when the work problems began because I think we could have helped him to sort it out. I am so sorry he suffered so much. He is remembered by his beloved Grinnellians as the best of people, playful and original.

Other comments from various sources appear in other posts on this blog.

The memorial service had to wait until the family could get together, along with someone to conduct the service. Back in my Wurtsboro days I had been a member of the Summitville Fire Company Auxiliary. The chaplain of the Auxiliary, and someone my sisters and I had met when we occasionally attended church in Summitville, was The Rev. Camille Regholec. What was my amazement when I looked through the listings in the local (Catskill) newspaper and found Camille named as pastor of the Palenville (where I now live) Methodist Church. Even more amazing was that the paper no longer gives the names of pastors, but did then. They had the address and phone number wrong but I finally reached Camille and we settled on June 4, 2011, for the service.

I had been in touch with the Asperger’s support group Ryo sometimes attended. Several members of it, along with many other people, came to the service. One member, Jesse Saperstein, had written a book, Atypical: Life with Asperger’s in 20⅓ Chapters. Jesse was horrified to learn of Ryo’s fate and, as an activist trying to promote a better understanding of Asperger’s, agreed to give the eulogy.

Several relatives were left in tears. Others said it was the best eulogy they had ever heard. Below are Jesse’s words in their entirety.

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 have 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, and many of you in the 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 grinding 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 that would show unconditional acceptance or at least differentiate between Asperger’s syndrome and 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 Ryos of today and tomorrow know there is an entire congregation of individuals who care about them and will help them fight for ourselves.