Williams Syndrome Support Group
Williams syndrome is a rare genetic disorder characterized by a distinctive, "elfin" facial appearance, an unusually cheerful demeanor, ease with strangers, a love for music, and cardiovascular problems. Persons with Williams syndrome generally possess very good social skills, to the point that this condition is sometimes called "cocktail party syndrome." This group can...
The following is an e-mail I sent to info [at] williams-syndrome.org:
I am posting this because I am an adult with strong reason to believe that Williams Syndrome is more common than diagnosed, like the Age of Autism. TED Talks like this http://www.ted.com/talks/juan_enriquez_will_our_kids_be_a_different_species.html have inspired me. What is more, many of my physiological symptoms have begun to cause me worry: the incontinence, the heart conditions, etc. I do not have a professional diagnosis, granted, but at the same time, I'm seeing Willies everywhere: people with sensitive hearing, peculiar grammatical-linguistic habits, Williams Gazes, endearing smiles, emotional needs, the list goes on. At the same time I have participated in nootropic and psychotropic drug usage, which I believe have only turned the positive aspects of Williams Syndrome into, well, superpowers. Please see http://www.wired.com/dangerroom/2012/12/pentagon-prepare-mutant-future/. In some cases, like with my sometimes uncontrollable ability to mimic others speech in real-time, scares the daylights out of me, to the point where I absolutely must depersonalize. I'm only becoming increasingly worried about what kind of person I will be 5 years from now. At 27, for instance, I wobble-walk and not-infrequently urinate repeatedly throughout the day. And this is a major source of anxiety. Moreover, given my talkativeness, insensitive people are wont to ask, "Are you stoned?", "He must be schizophrenic." When all I want to do is share my ideas and try my best to help others and enrich their lives. I never thought that "being myself" would bring so much anxiety. Now I feel forced to behave normally, as I did when I was a child, to conceal the psychological aspects of what seems to be Williams Syndrome, or a strange version of it.
---
Greetings,
I have strict reasons for believing that I carry, quite possibly, an interesting atypical variant of this microdeletion syndrome, Williams Syndrome ( considering research on the order of: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987159/ ).
But first, the good news (which, in fact, is my strongest reason for coming to such a conclusion):
https://soundcloud.com/nerdfiles/sets/lveat5
All of that music found there came about after roughly ~2 years of guitar playing. It's crude (however, bear in mind _every_ recording is a drop-of-a-dime, cold recording -- every recording), but I'm sure you can hear it; all recorded using Audacity and conversation tips I've picked up in audiomastering and through befriending well-established Houstonian guitarists, and, well, autistic-like, hyperfocusing practice (6-8 hour practice sessions, on a daily basis). I've learned, further, from your website, that the "affinity" for music can be circumstantial. And boy, do I have a set of circumstances for you!
A quick laundry list, I believe, is in order. I have been diagnosed with "right bundle branch blockage" which I believe maps to supravalvar aortic stenosis. My first cardiologist, I recall clearly, had a quaint grasp of the English language, which I immediately found odd upon meeting her. Ultimately, her diagnosis resulted in my being removed from my high school cross country team. The symptoms I identified then were shortness of breath and sharp pains in my heart; that is, not my "chest," but quite clearly and vividly my heart, the ticker. By that point I realized my "social awkwardness" must mean something more significant, and must be connected with the host of physical peculiarities I have suffered with my entire life. As I read through the physical characteristics of Williams, I immediately identify with just about the whole list: from the building up of earwax, the hyperlexia (http://webjournal.nerdfiles.net -- my web journal proves this, I am quite sure), to the dental issues, the awkward tandem gait, the wealth of autistic self-stimulatory tics, the self-harm, the "Williams Gaze" (which honestly gets me into a whole lot of trouble -- I distinctly recall, as if I could forget, being physically attacked on a number of occasions for unwittingly employing such a gaze), to the gastrointestinal issues (which bother me today), and, most importantly, the hyperthyroidism. I could go on; I really could. Sadly... painfully I could.
However, like with the aforementioned article, I believe my circumstances make for something quite interesting. First off: I'm terrible at arithmetic, yet I hold a degree (BA) in Philosophy from University of Houston, where my focus was essentially mathematics (Logic and Philosophy of Mathematics). I am a "Wittgensteinian," speaking candidly. -- It gets better.
As for my professional career, I am a front-end engineer, a profession many people, who are uninitiated, consider to be a form of programming. My deficiencies in mathematics shine here the most, but thankfully, math libraries exist to do a majority of that heavy math lifting. That said, what I believe is most interesting here lies in the question of the relationship between language and other forms of intelligence. I believe in a very critical way, I have either bootstrapped my intelligence using a peculiar obsession with conversation, namely: I can converse with myself for, as a current record, ~6 hours straight. I've done this once, and again for ~2 hours at another setting. However, more shockingly, as a child, I was in "year-around" schooling. The long-and-short of that part of my life is that I had very little childhood friends because my school breaks were simply out of sync with the general population; and so, it became a habit to converse with myself, not once considering schizophrenia or any of that. I simply used my memory to instantiate personas of people and strangers I had recently met. Eventually, my memory muscle, as it were, became excessively accurate, much to the frustration of those around me. Accurate, indeed, but spotty, and selective. That said, I have a collection of monologues I am prepared to recite at the drop of a hat. -- Think I'm done? (=
This, I believe, may be the most interesting part. After a serious encounter with the tragic death of an ex-girlfriend, I decided to simply give up the effort to conceal the laundry list of peculiarities of which I suffer. And even further, I decided to experiment. As of now, I have been practicing psychonautics for the better half of a year. I have smoked marijuana moderately for the better half of 4 years, using it as a tool for enabling my own guitar playing. And it gets better.
I have also employed LSD and magic mushrooms to overcome the emotional impasses of suffering tragic loss and what apparently looks like PTSD (I was also arrested for having a personal quantity of marijuana on me while at Menil Park; wrong place, wrong time sort of situation; where afterwards I lost my job at Waste Management, and then became unable to afford my dental work, which ended in two dental extractions). -- It gets better.
Ever heard of methylone ( http://www.fullvideostream.com/legal-bud/dea-bans-mephedrone-methylone-mdpv-m1-4-mmc-bk-mdma/ )? I will not bore you with the details, and certainly for the fact that on this point, I believe brevity makes it all the more compelling. My ankles started to swell, off and on; all of the autistic symptoms of childhood returned; my own sense of musicality became multiplied tenfold, where now, instead of just guitar, which is the only instrument I've tried to learn, I can play piano and various other instruments without much effort; --
And most shockingly, I developed professional-level soccer abilities within three (3) weeks.
All of that said, I have reason to believe I am not "mild to moderately retarded," and I genuinely believe that there is a very serious and critical opportunity in me toward a better understanding of what Juan Enriquez calls "homo evolutis": www.ted.com/talks/juan_enriquez_will_our_kids_be_a_different_species.html
One thing does remain true: Simply living with this condition is highly problematic. For one, I genuinely believe I am an elf. When you combine the talkative, excessively happy phenotype with a country of citizens who are enduring unemployment, undereducation, and outright poverty, being happy all the time results in a fast-track to isolation.
I want to hug everyone and play songs for them, but they'd rather feign jealousy and spite. I'm nearly homeless now, and at wits end. So, of course, I am also in need of advice, or guidance. I have tons of information to spill about my childhood, which was obviously chaotic and torturous, given that my single, "African American," hyperreligious mother had no guidance on how to deal with a hyperlexic, hypermentalizing child.
That all said: What do?
(I did not proof-read this, by the way.)
I am posting this because I am an adult with strong reason to believe that Williams Syndrome is more common than diagnosed, like the Age of Autism. TED Talks like this http://www.ted.com/talks/juan_enriquez_will_our_kids_be_a_different_species.html have inspired me. What is more, many of my physiological symptoms have begun to cause me worry: the incontinence, the heart conditions, etc. I do not have a professional diagnosis, granted, but at the same time, I'm seeing Willies everywhere: people with sensitive hearing, peculiar grammatical-linguistic habits, Williams Gazes, endearing smiles, emotional needs, the list goes on. At the same time I have participated in nootropic and psychotropic drug usage, which I believe have only turned the positive aspects of Williams Syndrome into, well, superpowers. Please see http://www.wired.com/dangerroom/2012/12/pentagon-prepare-mutant-future/. In some cases, like with my sometimes uncontrollable ability to mimic others speech in real-time, scares the daylights out of me, to the point where I absolutely must depersonalize. I'm only becoming increasingly worried about what kind of person I will be 5 years from now. At 27, for instance, I wobble-walk and not-infrequently urinate repeatedly throughout the day. And this is a major source of anxiety. Moreover, given my talkativeness, insensitive people are wont to ask, "Are you stoned?", "He must be schizophrenic." When all I want to do is share my ideas and try my best to help others and enrich their lives. I never thought that "being myself" would bring so much anxiety. Now I feel forced to behave normally, as I did when I was a child, to conceal the psychological aspects of what seems to be Williams Syndrome, or a strange version of it.
---
Greetings,
I have strict reasons for believing that I carry, quite possibly, an interesting atypical variant of this microdeletion syndrome, Williams Syndrome ( considering research on the order of: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987159/ ).
But first, the good news (which, in fact, is my strongest reason for coming to such a conclusion):
https://soundcloud.com/nerdfiles/sets/lveat5
All of that music found there came about after roughly ~2 years of guitar playing. It's crude (however, bear in mind _every_ recording is a drop-of-a-dime, cold recording -- every recording), but I'm sure you can hear it; all recorded using Audacity and conversation tips I've picked up in audiomastering and through befriending well-established Houstonian guitarists, and, well, autistic-like, hyperfocusing practice (6-8 hour practice sessions, on a daily basis). I've learned, further, from your website, that the "affinity" for music can be circumstantial. And boy, do I have a set of circumstances for you!
A quick laundry list, I believe, is in order. I have been diagnosed with "right bundle branch blockage" which I believe maps to supravalvar aortic stenosis. My first cardiologist, I recall clearly, had a quaint grasp of the English language, which I immediately found odd upon meeting her. Ultimately, her diagnosis resulted in my being removed from my high school cross country team. The symptoms I identified then were shortness of breath and sharp pains in my heart; that is, not my "chest," but quite clearly and vividly my heart, the ticker. By that point I realized my "social awkwardness" must mean something more significant, and must be connected with the host of physical peculiarities I have suffered with my entire life. As I read through the physical characteristics of Williams, I immediately identify with just about the whole list: from the building up of earwax, the hyperlexia (http://webjournal.nerdfiles.net -- my web journal proves this, I am quite sure), to the dental issues, the awkward tandem gait, the wealth of autistic self-stimulatory tics, the self-harm, the "Williams Gaze" (which honestly gets me into a whole lot of trouble -- I distinctly recall, as if I could forget, being physically attacked on a number of occasions for unwittingly employing such a gaze), to the gastrointestinal issues (which bother me today), and, most importantly, the hyperthyroidism. I could go on; I really could. Sadly... painfully I could.
However, like with the aforementioned article, I believe my circumstances make for something quite interesting. First off: I'm terrible at arithmetic, yet I hold a degree (BA) in Philosophy from University of Houston, where my focus was essentially mathematics (Logic and Philosophy of Mathematics). I am a "Wittgensteinian," speaking candidly. -- It gets better.
As for my professional career, I am a front-end engineer, a profession many people, who are uninitiated, consider to be a form of programming. My deficiencies in mathematics shine here the most, but thankfully, math libraries exist to do a majority of that heavy math lifting. That said, what I believe is most interesting here lies in the question of the relationship between language and other forms of intelligence. I believe in a very critical way, I have either bootstrapped my intelligence using a peculiar obsession with conversation, namely: I can converse with myself for, as a current record, ~6 hours straight. I've done this once, and again for ~2 hours at another setting. However, more shockingly, as a child, I was in "year-around" schooling. The long-and-short of that part of my life is that I had very little childhood friends because my school breaks were simply out of sync with the general population; and so, it became a habit to converse with myself, not once considering schizophrenia or any of that. I simply used my memory to instantiate personas of people and strangers I had recently met. Eventually, my memory muscle, as it were, became excessively accurate, much to the frustration of those around me. Accurate, indeed, but spotty, and selective. That said, I have a collection of monologues I am prepared to recite at the drop of a hat. -- Think I'm done? (=
This, I believe, may be the most interesting part. After a serious encounter with the tragic death of an ex-girlfriend, I decided to simply give up the effort to conceal the laundry list of peculiarities of which I suffer. And even further, I decided to experiment. As of now, I have been practicing psychonautics for the better half of a year. I have smoked marijuana moderately for the better half of 4 years, using it as a tool for enabling my own guitar playing. And it gets better.
I have also employed LSD and magic mushrooms to overcome the emotional impasses of suffering tragic loss and what apparently looks like PTSD (I was also arrested for having a personal quantity of marijuana on me while at Menil Park; wrong place, wrong time sort of situation; where afterwards I lost my job at Waste Management, and then became unable to afford my dental work, which ended in two dental extractions). -- It gets better.
Ever heard of methylone ( http://www.fullvideostream.com/legal-bud/dea-bans-mephedrone-methylone-mdpv-m1-4-mmc-bk-mdma/ )? I will not bore you with the details, and certainly for the fact that on this point, I believe brevity makes it all the more compelling. My ankles started to swell, off and on; all of the autistic symptoms of childhood returned; my own sense of musicality became multiplied tenfold, where now, instead of just guitar, which is the only instrument I've tried to learn, I can play piano and various other instruments without much effort; --
And most shockingly, I developed professional-level soccer abilities within three (3) weeks.
All of that said, I have reason to believe I am not "mild to moderately retarded," and I genuinely believe that there is a very serious and critical opportunity in me toward a better understanding of what Juan Enriquez calls "homo evolutis": www.ted.com/talks/juan_enriquez_will_our_kids_be_a_different_species.html
One thing does remain true: Simply living with this condition is highly problematic. For one, I genuinely believe I am an elf. When you combine the talkative, excessively happy phenotype with a country of citizens who are enduring unemployment, undereducation, and outright poverty, being happy all the time results in a fast-track to isolation.
I want to hug everyone and play songs for them, but they'd rather feign jealousy and spite. I'm nearly homeless now, and at wits end. So, of course, I am also in need of advice, or guidance. I have tons of information to spill about my childhood, which was obviously chaotic and torturous, given that my single, "African American," hyperreligious mother had no guidance on how to deal with a hyperlexic, hypermentalizing child.
That all said: What do?
(I did not proof-read this, by the way.)
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