Tuesday, June 30, 2015

Last Dance: The Final Confession

Originally this blog was called RobWorld, and then it became The Land of de Vries, and then, finally, Confessions of de Vries. The "de Vries" of the title refers to the surname of my alter ego, 'Angelo de Vries', but, alas....I am done confessing in  character. In closing up shop for good, I added a "The" to the name because it felt the right thing to do now that what's been posted can rightfully be dubbed "THE confessions". I feel satisfied that the entries posted over the last four years comprise a deeply personal book that I could not have been entirely aware that I was writing all along. I will check back to refresh links and revisit comments, but The Confessions of de Vries will otherwise remain frozen in time, with my favorite color combination, pink and black, kept intact throughout eternity.

What I wrote was always totally honest, but often guided by an overriding influence: the "Vogue Boy" video, and the desire to entertain and enlighten the people now inclined to think of me as a perennial dancing nine year old. When I began the blog in June 2011, I wanted to be the person whom I had assumed people wanted that boy to grow up to be, or at least who I thought they wanted me to be that one weekend when the video was really, really popular. It may seem silly that I would have felt this way, because it was silly. But I am someone who is always aiming to please, and after that one weekend of mega-virality, I was overwhelmed with gratitude for such a happy experience to manifest during an otherwise sad and frightening time in my personal life.  

By June 2012 I had mostly shed this totally unnecessary "how can I let on that I'm not really a dancer?!" concern in favor of displaying my written work: the pop culture-oriented essays that I had put so much effort into in college; the diary-like works that I had written in high school with no prior intention of ever making public; and a handful of essays about social struggles and sexual self-discovery, the writing of which would lead directly to my being diagnosed, as an adult, with autism spectrum disorder. It was this later trend of adult-oriented work that brought about catharsis, and which I feel is the freshest and most well-written. But it also felt unnecessarily provocative, if not inappropriate, in light of my familiarity to most readers being rooted in knowing me as an intense, gender-queer nine year old dancing eternally to Madonna's "Vogue". 

By June 2013, a number of personal hardships lead to my output on this blog being reduced dramatically. And in the two years leading up to today, as life's challenges became more overwhelming, I only posted seven times. But I am especially proud of those final seven chapters of a book-in-progress that is finally complete, even if the inspiration behind several chapters was and is personally devastating. I offer up four chapters to underline my sentiments.

The very first chapter of The Confessions Of de Vries was written at the height of post-"Vogue Boy" euphoria, a euphoria fueled in large part by the happiness that that mini-phenomenon brought to my mother and father that glorious weekend in June 2011.

The third chapter was about Marilyn Chambers, whom I regard not only as a great and underrated star, but as a beautiful and powerful guiding spirit. 

The penultimate chapter was about another guiding spirit and my most-beloved of all stars, Miss Bette Davis. On the 25th anniversary of her passing, I wrote about the role that my mother and especially my father played in delivering me the news of her death, back in October of 1989. I will always be grateful that my father read this essay and knew how vital this experience was in cementing my lifelong convictions about spiritual immortality. 

The last chapter of my confessions, sadly and yet beautifully enough, is the eulogy that I wrote and read at my beloved father's funeral last February. 

I feel that I have said what I needed to say and represented who and what I needed to represent. Except for one person. I have never posted a picture of my partner Brian before--in fact, I have never even revealed his name! And so although it was taken in the sad weeks following my father's passing, I want to close out The Confessions of de Vries with one, final image: Brian and I. It is presently my favorite picture of us. We were photographed by my Mom, and I can feel my Dad's spirit imbued in every pixel, along with both of my parents' love and appreciation for what Brian and I have shared since 2003.

I will continue to write as 'Angelo de Vries', but only when I am writing screenplays. And hopefully one of those scripts will soon be produced for one medium or another so that I can really introduce you to Angelo! But, from here, my personal writing will be by me and me alone, exclusive and unfiltered. As such, my new, entirely separate platform for original writing (aka "my blog") will be called Confessions of Robert E. I will update the link when it is online, and in the meantime, I hope that you may revisit some of the many chapters that comprise The Confessions of de Vries. Some of them are funny, some of them are painful, and many of them continue to articulate my most important memories, my most embarrassing truths, and my sociopolitical positions more effectively than I could ever hope to otherwise. Until I get back to confessing as Robert E. Jeffrey, I will re-post many favorite chapters throughout the summer via Twitter and shall continue speaking a thousand words at a time on Instagram. And please, don't be shy: I really do LOVE being followed! ;-)

I could never have imagined a more comprehensive summation of my life up to this point as I have now thanks to having written these confessions. And I will never forget the profound era of my life encompassed by each respective chapter uploaded between June 2011 and June 2015. I hope you will join me on the rest of my journey in life and in writing, and I cannot thank you enough for being a part of the ride thus far. 

With love always, 
Robert E. / Angelo de Vries Xoxoxo

Saturday, February 21, 2015

The Legend, The Myth, The Man: For My Father

On February 9th, 2015, my beloved father passed away unexpectedly. He was a deeply spiritual person whose awesome, incomparable influence is perhaps most responsible for my own spiritual convictions, as illustrated in my most recent post to this blog, over four months ago. I am not yet ready to put together and present the comprehensive tribute to my father that he so thoroughly deserves, nor to detail how this event has reshaped the rest of my life. And so instead I offer for all of your reading the Words of Remembrance that I spoke at his funeral on February 17th, 2015. I believe he helped me to write these words. I KNOW he helped me to speak them. 

And so I say to him, here and now, "I Thank You" and "I Love You".

To Jennifer and I, he was “Dad”. To all of you he was “Bob”, “Bobby”, “Uncle Bobby”, “Uncle Bob”, and “R.W.”. But despite all of the different hats he wore, we all knew the same man. Whether he had nothing or had it all, whether he was a child or an adult, whether before or after fatherhood changed his life. At every age and in every context, we all knew the same towering, iconic figure who had the strength of a legend, the integrity of a hero, and the heart of an angel.

Our Dad’s larger-than-life stature was genuine, but he was, like one of his heroes, John Wayne, truly a gentle giant. Underneath his powerful presence and brilliant wit was the precocious child who evolved without growing old. He never mellowed with age, and never lost the twinkle in his eyes that fueled a self-described “insatiable appetite for knowledge”. He devoured information from books, TV, and the internet, storing it in an extraordinary brain that never, ever lost its edge.

To everyone who knew him, our Dad was a living legend. But our Dad was also a profoundly sensitive human being. He always looked up with reverence to his sisters, Barbara and Diane, and viewed all of their children, and our Mother’s nieces and nephews, as his second children. He was a man of deep faith who neither doubted nor downplayed the role that angels played in guiding and protecting he and his loved ones. Chief among these guardian angels was my father’s father, Robert E. Jeffrey, whose name he gave me the honor of carrying. Jennifer and I were not fortunate enough to know our grandfather in life, but we grew up with his portrait watching over us everywhere we lived. And his presence was ever felt through our father’s love of him, and our father’s incurable sadness that his father passed away before his children were born. Jennifer and I now know that sadness, too. But we take our greatest comfort in knowing our Dad is now among the many angels who watched over him, including his Dad.

Dad provided counsel to countless family, friends, and colleagues, and was a natural mentor to the many, many people who looked up to him at every age and facet of life. He was the least judgmental man I have ever known, living by his own, defining motto: “I deal them in before I deal them out.” He believed in equality above all other principles, and my sister and I are blessed to have had a father who was truly and utterly devoid of prejudice. He loved nothing more than sharing happiness with others. He was an individual of boundless generosity who never felt more pride than when someone told him how comfortable they felt around him. Somehow our Dad was always surprised by how truly loved he was. But as with everything else in his life, he earned it. He earned people’s admiration. He earned people’s respect. And he earned his truly iconic reputation.

Our Dad was at his happiest when with Jennifer and I and our Mom, his soul mate and wife of 42 years. Our mother was his muse, the source of his strength, and the love of his life. Theirs is a love story that goes on eternally as he and our Mom continue to get us through this now. Our Dad raised Jennifer and I to only ever be ourselves, and provided unending support and encouragement to follow our dreams. We always felt loved and accepted, because we were.

Jennifer and our Mom and I have felt our Dad’s presence wrapped around us since the the day his journey here ended. And so on behalf of all four of us, I offer my condolences to all of you who loved him, for there are so very many people in this room for whom the loss is no less devastating than it is to us. I know our father is honored and amazed by not only the love and celebration of life, but by the wave of compassion and breathtaking generosity of so many people bringing comfort to our mother and Jennifer and I. We are overcome with gratitude to all of you, and so is our Dad.

Monday, October 6, 2014

25 Years Later: Bette Davis and The 6th of October

Miss Davis with one of her many beloved dogs, Tibby.

As I look back on my life, the profound significance of October 6th is truly awesome. It all began when I was just over a a year old: although unbeknownst to me at the time, October 6th, 1982 was the commercial release date of Madonna’s first single, “Everybody”. I don’t think I need to detail the impact that the first rung on Madonna’s ladder would ultimately lead to in my own life

Exactly one year later was the more profound October 6th for me. That was the literally awesome day when I met my newborn sister Jennifer for the first time, just before she came home from the hospital. I've been blessed to share most of my life journey with her, for she truly became my first and most defining friend. 

On October 6th, 1991, our dog Frisky came into the lives of Jen and I, soon to be joined by her equally beloved sister Chloe. And they changed us both forever. 

In the interim between the October 6th milestones that saw Jennifer and Frisky become defining parts of my time here on Earth, there was the October 6th when the whole world lost an artist and a heroine and gained an angel and a Goddess. It is no exaggeration to say that my life would never be the same. 

I refer to the October 6th of 1989, and to the death of Bette Davis.

Looking back as an adult, and verifying my theories via a calendar for 1989, I can surmise that my family was spending Columbus Day weekend on Cape Cod. We took two cars to get there from where we lived at the time, and my Mom and my sister and I left after my Dad, who arrived at the house while we were still en route. I still remember my mother getting the call on the vintage car phone in our station wagon. It was my Dad, telling my Mom to tell me that Bette Davis had died. The news must have just broken, and I can imagine that that night it would have been all over CNN, which I remember him always watching. The next morning, there was a gorgeous photograph of her face on the front page of The Boston Herald when I came downstairs for breakfast. I vividly remember that moment of seeing that newspaper and, internally, making peace with the finality of her passing. And for nearly ten years, the photo that they selected was immaculately recreated in my memories, too. But I can no longer definitively recall which photograph it was, for I went on to become such an enamored fan that that part of my memory was eventually lost among hundreds of beautiful still photos of Miss Davis that I have since laid eyes on. I strongly believe it was either the most iconic photograph used in the promotion of William Wyler's The Letter or a publicity shot of Bette as Margo Channing in Joseph L. Mankiewicz's All About Eve. I have trace memories of slightly longer hair, like Margo’s, yet with her face sparkling in that indescribable way it always did during the best years at Warner Bros. Either way, she looked utterly beautiful splashed across the whole cover of one of her hometown's two biggest newspapers.

I loved Bette Davis at the time that she died, which was why my father wanted my mother to be the one to break the news to me. But I had a narrowly focused way of showing idol worship at that age, for I was apt to be intensely fixated on only one era in a person’s career. In the case of Diana Ross, my favorite singer at the time, my obsession was all-consuming and yet relegated exclusively to her years with The Supremes. I worshipped Diana, but only as I would have in the 1960s, as if her incredible solo career had not even happened. (Thankfully, I got to enjoy the rest of her magnificent career many years later!) In the case of Bette Davis, I was fascinated and in awe of who she was in the 1980s, as opposed to any decades prior. This was based largely on the impact of being introduced to her via John Hough's infamous/brilliant Disney horror film The Watcher In The Woods. I had not only not been afraid of Bette Davis, as many traumatized members of my generation apparently were, but came away adoring her and apt to rewatch the film, and her performance, repeatedly. 

My adoration of Bette Davis was also based on her priceless talk show appearances. I gather that her ventures into late-night television were always legendary, but they seemed to take on a new air of importance in the 1980s, when she did not let her unbelievably debilitating stroke stop her from electrifying TV audiences with vivid recollections and a razor sharp wit. There was a relevance to the fact that the indomitable Bette Davis should come back from suffering a double mastectomy, a stroke, and a broken hip all within a year to still be the greatest star on the planet. The stroke dramatically affected her ever-copied persona, inhibiting her oft-imitated speech and limiting her defining use of body language. But she soldiered on, proving to the public that nothing could stop Bette Davis. She unconsciously formed a whole new set of mannerisms and speech patterns after the stroke, and it was this grande dame persona that I fell in love with as a child.

The place where I fell in love with Bette was, beautifully enough, Cape Cod, where her theater career blossomed at The Cape Playhouse. It was in Cape Cod where I have the most vivid memories of endlessly rewatching The Watcher In The Woods as well as seeing Bette on TV one afternoon thanks to a late-night TV appearance that my father taped for me the night before. (Like that fateful newspaper cover whose image has dimmed in my memories over the years, I cannot say with any certainty which Bette Davis interview(s) I watched as a child, because I have seen so many since.) And indeed it was en route to Cape Cod that I learned that the incredible life of Bette Davis had come to an end.

The Cape Playhouse, as photographed in 2010 for Cape Cod Today.

About nine months after Bette died, my family and I lost our beloved Grandma Mary, an “adopted grandmother” who had been as integral a part of my and my sister's childhood as both of our biological grandmothers. Grandma Mary’s death was the first loss to hit so close to home. Seven years later, my father lost his mother, and less than two months ago, my mother lost her mother. My sister and I have since found ourselves living in a world without the physical presence of the three matriarchs of our childhood and adulthood. These three losses in many ways are the defining signposts of my personal timeline up to this point. And the loss of Bette Davis preceded all three of them. 

I had already been fascinated with the concepts of life and death and differing perceptions of reality at an extremely young age. But the passing of Bette Davis was the first time my life was consciously affected by death. I was saddened and yet neither afraid of nor confused by the death of Bette Davis. Whether because of upbringing, intuition, or some profound spiritual influence, I put emotions aside and accepted the idea of life ending with death despite, or perhaps because of, a belief in the immortal spirit. My perspective on the sharp distinction between physical and spiritual death has never wavered. I do not feel guided in this by doctrine or delusion or fear, but rather by an internal understanding that has remained with me for as long as I remember being alive. I cannot say that Bette's death fully prepared me for any of the subsequent losses yet to be endured, but I believe that my actively accepting the notion of Bette Davis in spirit has absolutely guided me in the ensuing quarter century.

The back cover of the 1962 first edition of The Lonely Life.

I suppose you could say that I have always considered Bette Davis to be the standard-bearer for all of humanity. But it was not until a decade after her passing that I actually dove into her filmography. In 1999, I read her last book, This ‘n That, saw many of her classic films, and even wrote about Bette Davis (along with Madonna and Dario Argento) for an essay that apparently helped get me accepted into Emerson College. In the mid-2000s, a number of DVD releases reignited my interest in her career and prompted my finally reading her earlier autobiographies, The Lonely Life and Mother Goddam. I ADORED both books, but it was The Lonely Life that offered an unprecedented insight into the mind and heart of an individual who was far more like me than I could ever have realized simply by watching her films or even her dazzling interviews. I feel that I reaffirmed a deep spiritual bond with Bette Davis when I read The Lonely Life at the age of twenty-four. It has since become my favorite book, and based on what I have learned in the ensuing years, I believe it offers a very strong suggestion that Bette Davis was, like myself, an individual with autism spectrum disorder (ASD). Bette's unrelentingly honest insights into her all-consuming drive, obsessive perfectionism, constant desire to work, and lifelong struggles with personal relationships were as relatable to me at twenty-four as they still are at thirty-two. These shared traits are also part of what  lead to my being diagnosed with Asperger's Syndrome/High Functioning Autism. There is much discussion online, thanks to communities like Wrong Planet and one of my personal heroes, Rudy Simone, about the nuances of ASD in individuals like myself and many female Aspies who "hide it" underneath a protective veil of feigned charisma. We may never know if Bette Davis was on the autistic spectrum, but based on evidence left behind, I believe she was. And I believe that that makes her an even greater role model to millions of people just like me.

Aside from being the greatest of artists and finest of human beings, Bette Davis epitomized Joseph L. Mankiewicz's notion of "a great star". I must admit that Bette has even eclipsed Madonna as my favorite star--but Madonna is, of course, a very close second! It really is something that Bette's best films, from any given era of her career, still entertain new generations of viewers in the exact same way that they did upon their initial release. And thanks to Bette's impeccable taste and domineering influence, her best films still hold up on artistic merits, too. In her work and in her life, Bette underlined the role that a brilliant mind plays in being "a great star" versus merely "a celebrity". I take stardom very seriously because of Bette Davis. And I would argue that every culture benefits from stars who break barriers and inspire masses, which Bette Davis did in spades both during, and indeed long after, her incredible lifetime.

Thank you for everything, Miss Davis. XO

Monday, September 29, 2014

The FYI File: Honesty, Grace, and "MAD"-ness

Today marks six months since my last post, a new record for lengthy absences since I started blogging three years and three months ago. Resuming this is not “something that has slipped my mind”. It’s been on my mind constantly, and my failure to do so has illustrated the inertia and creative frustration that has dominated my life for most of 2014. Hence, a no-frills entry to bring us up to the present.

My feline son, Toby, looking especially angelic on 08/22/14.

Just Checking In

This past Spring, after I posted the clunkily titled "I Honestly Know Me: An Evaluation of an Evaluation", I found myself freaking out that I had just revealed way too much about the daily failures of my adult life and sunk into the scariest territory of all: humorlessness. At the time, I was writing down a lifetime's worth of experiences that lead to my self-diagnosis of Asperger's Syndrome, all part of massive preparations, several months in advance, for scheduled neurocognitive testing in July. I was reading John Elder Robison’s Be Different: My Adventures With Asperger's and Rudy Simone’s Asperger’s On The Job at the time, books that were crucial to my self-understanding and self-empowerment. I was inspired by these incredible Aspergian authors to record my own experiences and put them aside for future use in a book. I hoped that fearlessly yet humorously delving deep into my personal experiences, as John Elder Robinson and Rudy Simone had done, might just help fellow undiagnosed Aspies identify and appreciate their uniqueness, as opposed to the more commonly realized experience of suffering in silent confusion. (This is not to suggest that all undiagnosed Aspies endure such struggles: I suspect that most successful people in the entertainment industry, including nearly all of my favorite artists, are fellow Aspies.) Due to a desire to save what I was writing at the time for the potential book-to-be, I found myself without anything to say on the blog. And my drive to find something fresh to write about quickly dissipated when a close loved one was diagnosed with cancer.

In the months since, I have witnessed incredible bravery and strength and sacrifice as my extraordinary aunt has fought valiantly against terminal illness with her sister and children beside her every step of the way. It has been a truly awesome demonstration of humanity at its finest, one that I have been honored to witness. But I would still give anything not to have seen such exemplary integrity, and to instead be in an alternate reality without cancer constantly striking the world's bravest and most inspiring people. My beloved aunt continues her battle, and in the months since it began my family and I have said goodbye to a young friend who died in a matter of days after finding out he had cancer. His loss was felt the world over, for he lived and touched lives on nearly every continent. These past few months also saw the passing of my Mother's Mother. Though just a few months shy of eighty-nine years old, my grandmother's death blindsided all of us who expected her to be with us for another decade, at least. My grandmother was a deeply spiritual person, as am I, and I have felt and continue to feel her near ever since the time of her passing. But this blessed comfort does not change the radically altered landscape for all of us, and particularly my Mother, who have only ever known this world with our beloved Nana in it.

09/20/11: My mother, her parents, and their beloved dog, Blinky, on my happiest of birthdays.

I went into 2014 predicting a year that would be profound and beautiful and a happy end to seven years of bad luck that plagued me since I graduated college in 2007. I cannot say that this year brought with it the euphoria that I hoped for. But it certainly has been profound, and I cannot deny that it has been beautiful, for I have learned more about appreciating life in the present tense than I ever have before. It was not until I was sixteen years old that Madonna’s Ray of Light album/era introduced me to the notion of “living in the moment”. And it would take another sixteen years before I truly understood the vital, urgent importance of taking that approach to my and loved ones’ journey here on Earth. The moments shared with my loved ones in 2014 are among my most cherished moments of all. And each has made me realize how incredibly blessed I am.

"MAD" About Her

Despite the sadness, I would also like to celebrate how many happy times there have been in the six months since my last post. Among the most purely and unoforgettably enjoyable of these experiences was being interviewed for Matteo Maccarinelli’s MAD For Madonna, an upcoming documentary about Madonna’s passionate global fanbase. I was honored beyond words to partake in this film thanks to the fan popularity of my "Vogue Boy" video, because I knew it would give me a chance to speak from the heart about the artist who has had the greatest singular impact on shaping my creative output. 

I spent weeks preparing for my film debut, fearing how I would come across to people who had only ever seen me as the child in the video, worrying I would let them down with how I had turned out. I simultaneously feared that in my state of anxiety I might forget something important I wanted to convey, or just blank out altogether and make myself, and in turn my allegiance to Madonna, a joke. I was so worked up by the day before filming that I couldn't sleep that night. But twelve hours before the interview, I saw a shooting star overhead while outside listening to Madonna’s “Superstar”. And about eight hours prior, a single leaf fell from a tree and glided down near me as I watched the sun rise. I felt the Universe was letting me know that things would play out just fine. And indeed, they did. 

I only got about two hours of sleep before the cameras were to roll, but my adrenaline was pumping and the filming itself was even more enjoyable than I could ever have imagined. The dialogue prompted by the wonderful interviewer/co-filmmaker, Madeline Herec Poirier, yielded a number of unexpected insights that were as beneficial to my understanding of my relationship with Madonna as they were, hopefully, to the film itself. In deciding what I would wear onscreen, I unearthed my favorite Madonna t-shirt, from The Confessions Tour, which I had retired in 2010 after being photographed in it when I met my OTHER favorite living artist, Dario Argento. I opted to resurrect and immortalize this t-shirt on June 6th, 2014, an incredibly well-timed day for filming as it was exactly three years after I uploaded my childhood video to Vimeo. I’m obsessed with dates, and with fate, as anyone who’s read this blog for long enough knows. And filming my interview three years after "Vogue Boy" brought the experience full circle in the most divine way possible.

My sister Jen took this post-filming photo, perfectly capturing the elation of that beautiful June 6th!

There But For A Goddess Named Grace

Speaking of dates and divinity, today marks three months since I began to (also) worship at the altar of Grace Jones. I’d deeply respected her since I discovered her in the '90s and much later became enamored with several of her singles after I fell in love with her in Richard Wenk’s vastly underrated Vamp. But this past June 29th, I decided to finally take a long delayed, well-worth-the-wait dive into her discography. I was inspired by the artwork of one of my favorite blogs, GangsterSaysRelax.com, to start with her 1982 album Living My Life. By the time I reached the closing track, “Unlimited Capacity For Love”, which has since become my favorite, I knew I was about to become a HUGE Grace Jones fan. Ever since that fateful summer evening, Miss Grace Jones has become my most-played musical artist of 2014, dominating my use of Spotify and YouTube for the entire summer before I was fortunate enough to be gifted several of her albums and the DVD of her One Man Show for my birthday on September 20th. I was not surprised to find that the music of Grace Jones is so brilliant, but I was surprised to find that it is so spiritual, and indeed the combination has been key in making her body of work the soundtrack to an unprecedentedly monumental year in my life. This is not to suggest that I’m not still constantly listening to Madonna, Donna Summer, Diana Ross or ABBA. But if Grace has overshadowed these long-time favorites in 2014, it’s because I’ve got a lot of lost time to make up for. And making up for it has been an utterly sublime pleasure.

Jump to 3:05 to witness the overpowering energy that obliterates inhibition and arouses empowerment in everyone who comes into contact with Miss Grace Jones!

Just Like Starting Over

And now, I close with a confirmation: I have Asperger’s Syndrome. 

Of course, you probably don't need me to tell you this if you’re a longtime reader of this blog familiar with the passions, obsessions, and/or writing style of "Aspies". But if you’re not, or if you’re someone like me who can’t rest easy without the validation of a medical professional, I’m happy to say that my diagnosis is official. Following up on several hours of neurocognitive testing at a top Boston hospital on July 10th, an incredible neuropsychologist told me on July 22nd that she agreed with my self-assessment and formally diagnosed me with Asperger’s Syndrome and co-morbid anxiety disorder. (Anxiety tends to go part and parcel with ASD, but my anxiety is severe enough to warrant a separate mention.) Out of respect to this incredible doctor who inspired and empowered me, I’ll withhold further details except to say that it was an entirely positive experience. Insurance challenges notwithstanding, I urge anyone who suspects they are an undiagnosed Aspie to pursue neurocognitive testing: my neuropsychologist's report was, without a doubt, the single most accurate assessment of me that has ever been written. 

I never thought that, at thirty three years old, I would be living with my family with a dusty college degree and no money, no job, no experience, no prospects, and no idea of how to change all of that. I struggle with severe impairment in executive functioning and long-hidden learning disabilities that were revealed in my testing, the combination of which, along with my anxiety, has left me reclusive, afraid to drive, and struggling to function in society as a normal adult. I share all of this in solidarity with others like me on the autistic spectrum, (once) undiagnosed adult Aspies who are, in my neuropsychologist’s words, “incredibly bright” yet unable to apply the gifts that they possess the way everyone around us seems able to.

The gift that I possess, which has kept me from being swallowed up by the inevitable depression that comes from such grave realizations, is the ability to write. For months I have felt robbed of this ability, paralyzed by medical and financial crisis and overwhelmed by fear and confusion. But after six months, I am determined to find a means of taking this gift that I have been given and utilizing it. I have to believe that I can still pull myself, my partner, and my family out of the rut I ended up in after years of living my life as an individual with undiagnosed autism spectrum disorder. With the support of my incredible loved ones and, I hope, a return to regularly writing for this blog, I think I might just have a shot at turning the challenges that haunt me in 2014 into the salvation that defines me in 2015.

My all-time favorite performance of my 2014 theme song:
"NEVER stop the action!"

Saturday, March 29, 2014

I Honestly Know Me: An Evaluation Of An Evaluation

This is a most unusual post. It does not deal with subject matter I normally talk about on this blog, or with anyone outside of my partner, my doctor, and my immediate family. This is my first post about my firm belief that I am an Aspergian (one with Asperger's Syndrome), and the devastating consequences that have resulted from my failing to realize this until well into my thirties. I can only imagine how many millions of people are struggling in their lives, in ways they can neither understand nor express, because they have no idea that they, too, are on the autistic spectrum. This first post is about the role that cultural stereotypes and my own constructed identity have played in making a diagnosis more difficult than I had expected. If not for the discovery of countless personal testimonials in books or online, I might still doubt myself about who I am and what it is that I am dealing with. Based on incredible feedback generated by past posts, I suspect many people out there are facing the same exact challenges that I am, and for the same exact reasons. And I hope that sharing my experiences may be beneficial to any of them who read this.

Part 1: August 29th, 2013

For the month leading up to the appointment, I was under the impression I would be undergoing a daylong series of neurological tests to determine if I, my family, and my referring physician were correct in the assumption that I have Asperger's Syndrome. I was so wrought with anxiety about what these tests would entail and how I would fare under them that I could not sleep for the two nights prior to what turned out to be a forty minute interview.

The appointment began at 8:30 AM. The neurologist came out to the waiting room to call me into an office where the evaluation began with a question along the lines of "so what brings you here today?". The neurologist was polite, but not especially friendly, with voice and body language suggesting to me that the neurologist felt I did not belong there and that this was a pointless exercise. Or, perhaps, that said neurologist was extremely tired. I told the neurologist about my family's encouragement in my being tested and my having many traits since childhood (as corroborated by relatives and many videotapes) up to the present. I told the neurologist that I have a family history of autism as well as bipolar disorder. I noted that while I had a cursory knowledge of Asperger's, I avoided researching too much so as not to impact my evaluation. I was asked a series of questions while the neurologist looked at a computer screen and typed.

I had begun the interview by stating that it was my sister who approached me about Asperger’s Syndrome after viewing Temple Grandin's TED Talk and being reminded the whole time of me. I indicated that growing up in a protective bubble with my parents and sister in a happy but insulated childhood allowed me to feel more comfortable expressing myself but meant that it took me much longer to pick up on how people in the world outside of my home would react to such expression. I even mentioned my “Vogue Boy” video because I felt that the performance people were seeing on video did not match who I really was off camera. What countless viewers interpreted as brave was in many ways blissful ignorance. (Something closer to my personality, if still meant for audience approval, was put on display in another video shot that same summer in a “1-2-3 Video” message booth.)

When asked about my early verbal communication, I referenced having been told over the years by my mother that I had uttered my first word at three months old when I greeted a housekeeper with a "Hi". The neurologist seemed skeptical. It may have been that this seemed out of character for a child with AS. But, that morning, I read the reaction as doubt that this event had even occurred. That at three months I had begun expertly mimicking sounds in response to specific stimuli seemed buried underneath overall suspicion, which fueled my subsequent insecurity about how my answers were being received.

I made it clear that I am a recluse living with my parents in my childhood home and that I had seen hardly any other people for the last year. I stressed that crippling social anxiety, not a lack of desire to be working, was the reason why I cannot get a job and turn my life around in spite of all the people who look at me and see nothing more than a typical “loser” stereotype. When asked about my sleeping schedule, I revealed with my trademark New England/Catholic guilt/shame that I am most inclined to go to sleep around 5 AM and wake up around 2 PM. This counters society's expectations of "normal", and I've spent two decades trying to conform, but it has been my natural tendency since puberty kicked into high gear at the age of thirteen. I didn't get a verbal response. But the neurologist's non-verbal response seemed to me, once again, critical and vaguely judgmental.

The most surprising interaction came about when the neurologist asked me if I dated or had girlfriends in high school. I told the neurologist that I’m gay, and that I knew this back then but was not out at the time. I told the neurologist that I did not cover this up by dating females, and emphasized that I was adamant about not leading girls on after a close female friend had had feelings for me which I could not reciprocate at a time when I could not be honest as to why. While typing, the neurologist stated, in regards to my being gay: “it was pretty obvious, but I have to ask”. At the time, I laughed, as I did not interpret it as hate speech. In hindsight, I feel this was part of an overall sense of dismissiveness that permeated the reactions to my answers.

Asked about my ability to read other people being angry or upset, I noted that my tendency was the extreme opposite: I always fear having just hurt people and I always think people are left upset. I begin to question every move I've made and everything I've said and in what way I could have hurt someone enough with what I've said or done to potentially destroy them. Someone telling me they love me one minute doesn't mean I won't be convinced I have not earned their hate the next minute, hence a perennial need for assurance. I don't know how much of this I conveyed in the office because what was on my mind and how it came out seems to have been somewhat disconnected. But I'd like to think I made it clear that my empathy, while abundant rather than lacking, is still extremely abnormal.

After giving my answers, I looked at my hands or looked at the wall or at the floor while the doctor looked at the screen and typed in silence. All of the neurologist's questions were met with honest answers. Most of these honest answers would indicate AS. But these were ultimately dismissed on the basis that: a.) I get along well with my immediate family, b.) I care intensely and obsessively about not hurting other people's feelings, and c.) "you seem amiable to me". According to the neurologist, my concern for the feelings of others indicated I did not have Asperger’s Syndrome, as “people with Asperger’s don’t really care if other people are happy”. The neurologist felt that my being close to my sister indicated I did not have Asperger’s Syndrome since the difficulty that people with AS have interacting with other people begins at home, and thus it would be unlikely someone with Asperger's would get along with family members.

The neurologist felt that simple therapy would treat what the neurologist perceived as severe social anxiety disorder, which had not only impacted my ability to pursue a job but also my ability to keep one for more than a matter of weeks or months. The neurologist felt that my experiences being a gay teenager at an all boys’ Catholic school in the 1990s could be largely responsible. The neurologist suggested that I was likely still dealing with unresolved anxiety from my semi-closeted high school years.

I reiterated something that I brought up early on in the evaluation, which is that I had been rapidly flapping my hands in states of intense thought or heightened excitement ever since childhood, when I did it openly, and that this is something I constantly still do in private as an adult. In the most alarming statement of the evaluation, the neurologist offered that this, too, was directly related to my homosexuality. “Most of my gay friends use their hands a lot” was the specific response. Once again, I laughed this off. 

The neurologist followed up this summation by noting that if I wanted to I could still make an appointment to undergo four hours of neurological testing to know for sure whether or not I had Asperger’s. At that point, I was anxiety-ridden, discouraged, and in doubt of my ability to understand anything about myself. I could not wait to get out of there, so I turned down the opportunity. I accepted the diagnosis despite my misgivings, I referenced my "Vogue Boy" video (no doubt a an unconscious suggestion to reconsider the diagnosis), and cheerily said goodbye with a big smile because I was so happy to be leaving. 

Part 2: March 29th, 2014

Over six months after my evaluation, I discovered that a number of challenges faced by my partner and I are commonplace in relationships in one which one (or both) partners have AS.  I proceeded to read books and testimonials from Aspergians writing in defense of their unique emotional make-up. Learning that perhaps intense over-empathy is being mistaken as a lack of empathy in a number of Aspies seemed to hit the nail on the head: this was EXACTLY what I was trying to communicate in the office that day about my skewed emotional make-up, but sadly to no avail. Maybe some Aspies, if not most, don't care if other people are happy. But many Aspergians assert that this oversimplification does not accurately describe all people with Asperger’s, and empathetic Aspies like activist/artist Alex Plank are clearly frustrated with not being heard--or, like myself and many Aspergian females, are not being diagnosed at all. 

My going in for the evaluation in the first place was based not only on my own feelings, but also based on the opinions of my parents, my sister, and my life partner. (Subsequent research has lead me to believe that my aforementioned loved ones are themselves undiagnosed Aspergians, hence the surprising closeness with my family.) One month before the evaluation, I had been referred to the neurologist by my physician, who “would not be surprised” if I was found to have Asperger’s Syndrome  based on knowing me through a handful of appointments over seven months. My physician also suspected that if I had AS, it would likely be a “mild” case. Subsequently, my fear about being evaluated was that my desire to please and my aptitude for unconsciously performing would suggest an outgoing personality and belie the fact that said “personality” is, in fact, a lifelong front. Sadly, my fear was realized. 

For seven months now, that morning of August 29th, 2013 has been a frequent source of pain and regret. I spent the preceding weeks anticipating a definitive neurological confirmation that would allow me to approach my life in a positive new way. I was given a diagnosis based on an interview, leading me to believe that I had apparently misunderstood myself for my entire life. I wore a Michael Jackson t-shirt into the office that day, because it was his birthday, or “Michael Jackson Day”, as I call it. Michael has been a guiding influence on me since my birth, and only more so since his death, and going in I assumed he was on the autistic spectrum, too. When I was told Aspies don't care about the happiness of others, I realized he couldn’t be one either. He, too, was obsessed with other peoples' happiness, and like myself, his isolated and intensely creative life was fueled by this aim to please, from his early success as an ultra-precocious child through his troubled adulthood.

I emphasized where I was at in my life, and not without a great deal of shame. I was thirty one, living with my parents, and had become a recluse. I was too anxious to drive a car or see people, and thus incapable of interviewing for a job or shopping around for a suitable therapist. I was spending my days writing by myself and my nights watching movies by myself. It is an endless cycle of solitude that is usually only broken by extended video chats with my partner, whom I feel is a fellow "Aspie" and who is also presently living with his family in a nearly identical situation. I have since learned that my present life, as described to the neurologist, is sadly not an unfamiliar manifestation of undiagnosed Asperger's Syndrome. I am, like so many other undiagnosed adults, suffering the inevitable state of disconnection and uncertainty that comes with not knowing "what's wrong with me" in relation to the rest of the human race. If I had realized just how NOT alone I was, and just how RIGHT I was to be there that day, I would never have turned down the opportunity to undergo the very testing I thought I was showing up for in the first place. I went in for an evaluation based on traits that I saw in myself for years prior to the low point that my life had sunk to. I had no idea that day that said low point is further indication that I am not only correct in my assumption, but would have benefited immeasurably from having been diagnosed years earlier. And I would give anything to have known all of this last August. 

Prior to the evaluation, I was shocked and relieved to learn that rapidly flapping my hands while in a state of excitement brought about by intense inwardness--something which consistently attracted amusement throughout childhood before becoming a hidden, embarrassing trait ever since--is a defining trait of individuals on the autistic spectrum. But I did not know the word for this, “stimming”, until after my evaluation. I suspect that my use of grandiose hand gestures while explaining myself, rather than the stimming that I was attempting to explain, is what the neurologist reacted to. Several days later, my sister sent me a YouTube video of a young boy with Asperger’s whose mother asked him to demonstrate and explain his stimming. His behavior, his demeanor, and his description of his internal experience while stimming illustrated everything I had been attempting to communicate in the office and apparently could not. I saw myself in this child, as did my sister. Subsequently, the mortified reaction of everyone with whom I shared the doctor's "most of my gay friends use their hands a lot" statement preempted my own shock in being given such a stereotype-based response to such an incredibly common behavior of individuals on the autistic spectrum.

I would like to stress that I do not believe that the neurologist I spoke with was motivated by any homophobic inclination. With that said, I feel that my being gay was way too prominent an issue in this evaluation. Addressing my sexuality as “pretty obvious” early on and later writing off my stimming as behavior not unlike “most of my gay friends” was troubling, to me and to many of my loved ones. I have always struggled with social relationships, in predominantly gay as well as predominantly straight environments. Thus I do not agree with the theory that my problems today are directly rooted in my Catholic high school years, particularly not after fifteen subsequent years of being relentlessly open about my sexuality and in a decade-long relationship with another man. Two of my oldest friends, neither of whom I see very often but both of whom have been in my life since our youth, both separately joked that I had gone in for Asperger’s testing and been diagnosed as gay.

Based on the neurologist’s facial expressions and body language, I interpreted skepticism, condescension, and general irritation. I took the neurologist's "so what brings you here today?" as an implication that this was an audition as much as an evaluation. I proceeded accordingly, answering the questions and reading the signs sent by someone who struck me as going down a checklist rather than exhibiting concern for what I was saying and where it was coming from. Throughout the evaluation, I felt that the neurologist was looking at me as though I was looking at Asperger's as a scapegoat for my neurosis. I may very well have been correct in this assumption. Or I may very well have entirely misread the non-verbal cues before me. If indeed I completely misread the neurologist, then I feel all the more convinced that I have Asperger's. But regardless of the accuracy of my interpretation, by the time the forty minutes was up, I felt browbeaten and stripped of any sense of self beyond being gay and seemingly “amiable”. I also felt like such a neurotic stereotype that I turned down the tests I had wanted to have done so as to avoid further embarrassing myself in the eyes of the neurologist. 

I know that I have Asperger’s Syndrome. This is based not only on the overwhelming extent to which I can personally identify with the experiences of diagnosed individuals, but also based on the observations and memories of people close to me whom I have knowingly or unknowingly revealed my true self to in the years between my being an ahead-of-his-years child and a what-went-wrong-with-him adult. I also know that my evaluation had a catastrophic effect on my self-esteem. I feel that a big part of my reaction in this regard was based on the fact that the evaluation seemed bound to end in dismissal from the get-go. That such focus would be placed on my sexuality suggests that perhaps my feigned demeanor had a bigger influence on my diagnosis than did my honest answers to the questions I was asked. Since that day, I have struggled to feel like myself again. But thanks to incredible blogs like SeventhVoice, communities like Alex Plank's WrongPlanet, and activists/authors like Temple Grandin, Maxine Aston, and John Elder Robison, the voices of people whose life experiences I most relate to are leading me out of the dark.

Up to now, this blog has primarily been a platform for me to worship my favorite stars, rave about my favorite movies, celebrate my favorite pop culture anniversaries, and generally indulge in my perceived narcissism--all indicators of Asperger's, I might add! Thus, you may rightfully be asking why I would suddenly feel the need to discuss extremely personal details about my mental health. And that brings me to the questions I’ve been asking myself in the days leading up to writing this post. Is it not possible that cultural stereotypes of gay men as high-strung and idol-obsessed has permeated science and medicine, and to such an extent that autism is being confused with homosexuality? Is it not possible that in the seven months since I accepted my diagnosis that numerous other LGBTQ people have accepted similar diagnoses, putting aside their self-understanding in favor of an expert opinion? And, more importantly, is it possible that doing so has lead to the same depression, anxiety, and overwhelming self-doubt that has swallowed up the last seven months of my own life? 

I have only myself to blame for letting anxiety and self-doubt hold me back from giving a “Yes” answer when offered the testing I so wanted. And so I blamed only myself for the last seven months. Now, I anxiously await the opportunity to finally undergo neurocognitive testing in July. I could not be more excited about Summer 2014, and I pray it provides the assurance and optimism I sought out in Summer 2013. In the meantime, I will fight to believe in MY understanding of myself, even if it means fighting against the real or perceived skepticism of others. I stand alongside everyone waging a war against such doubt, and will keep my comrades up to date through future posts.