Really hit harder today by Roger Ebert’s passing than any celebrity or public figure that I can remember. He was an amazing writer, communicator, and even artist who was adept at sharing his passion for the movies that I care so much about, and later for how he embraced technologies to give himself a new voice both online and off. Probably most of all because I grew up watching his show every Sunday, both with Siskel and later with others.
Below is a link to my favorite TED talk, not just because of how he pulled it off and the emotions involved, but that he touched so effectively on what makes online communication so effective and powerful for those who can’t always do so in person… and generally how much technology helps those afflicted by illness or disability. But the most amazing moment was the demonstration of the clever technology that had been used to digitally reconstruct his own voice using clips from his commentaries on classic movies. The meaning behind that in his case just goes so deep.
An amazing guy. An amazing voice.
Well, that was about as long a gap after my first post as could be expected. I guess I should probably try to finish the dozen-or-so draft posts I’ve been working on.
In the meantime, I figured my talk at Ignite Hampton Roads tonight would be a good opportunity to start posting more about my condition and experiences, and also to link to some good resources for anyone following up from the talk (Hi!).
To give a really quick summary of dysautonomia – it’s a condition of the autonomic nervous system (ANS) that disrupts the body’s ability to manage its automatic processes. The ANS is the part of the nervous system that controls your heart rate, breathing, digestion, etc., and when that control mechanism is disrupted it can wreak havoc on the body. Here’s a bit from Wikipedia on the various conditions that fall under this term (about four of which I’ve been told I have):
A number of conditions are forms of dysautonomia: postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia (IST), vasovagal syncope, pure autonomic failure, neurocardiogenic syncope (NCS), neurally mediated hypotension (NMH), orthostatic hypotension, orthostatic hypertension, autonomic instability, and a number of lesser-known disorders such as cerebral salt-wasting syndrome.
It affects an estimated 500,000-1 million people in the US, but it also looks like a lot of other conditions, and many doctors aren’t familiar with it – making it particularly hard to diagnose. It’s basically a pain in the ass.
In most cases dysautonomia is a result of some underlying disease or disorder, and I’m still going through tests to get to the bottom of my own cause. But I’m also using (and building) a variety of digital tools to track and understand my body and symptoms, which is the subject of my Ignite talk.
At some point I’ll write up my own experiences going through years of tests and seemingly unrelated diagnoses (fainting, ADD, a sleep disorder, irritable bowel syndrome, tremors, tachycardia, heart palpitations, etc.) until someone decided to strap me to a table and rotate it to see if I’d pass out (spoiler: I did). But I’ll save it for another time.
For more information on the condition, there are two great non-profit organizations that have recently launched: Dysautonomia International is a world-wide organization focused on raising awareness and supporting research, and DysautonomiaSOS is a regional organization focused the mid-Atlantic area that I’m personally involved in, which hopes to improve education about dysautonomia and its related conditions (DysautonomiaSOS will also be launching a full site very soon). Lastly, for any Redditors who may be reading, I have to throw in a personal plug for /r/dysautonomia, the subreddit I started and moderate to connect the surprising number of Reddit users who have learned that they have this condition. (Edit: Dysautonomia Prison also has good insight and is run by someone in the local Hampton Roads, VA area).
Feel free to contact me at the email address on the right with any questions about my own experiences or dysautonomia in general.
And wish me luck that I don’t pass out in front of a large audience tonight…
I hear this blogging thing is going to be big…
So my goal here is create an outlet for more focused writing than what I put into my clever tweets, long-winded forum posts, deep private messages to friends, Facebook statuses, work emails, and other dry software documentation.
I’m really hoping to use this as a place to talk in a little more depth (and a lot more publicly) about things I’m working on, what I’m going through with my health, and other random nuggets that might come out of my head.
It should be an interesting and amusing insight for both of you.