Letter to Congress

My name is Aaron Winborn, and I am a 46 year old father of two young girls, ages 4 and 10, who lives in Harrisburg, PA. I am also an Open Source software developer, who was diagnosed three short years ago with Amyotrophic Lateral Schlerosis, ALS, more commonly known as Lou Gehrig's Disease.

Like the famous baseball player, I face the prospect of becoming locked-in, trapped in a body which is incapable of any movement. Already, my torso, arms, and hands are completely paralyzed, and I am incapable of speaking.

Unlike Lou Gehrig, I happen to live in an exciting time when technology has grown in leaps and bounds, offering me and other similar patients if not hope, as we are still no closer to a cure, then at least independence, from the power wheelchair that can be controlled by the patient's hands, feet, or even eyes, as the need arises, to a communication device, such as the Tobii I-15 that I am using to type this letter with my eyes alone.

This device, acquired mostly through Medicaid Assistance, has been virtually a life saver. It allows me to communicate with my family and friends directly, without the need for flashcards, which would have been my only option for communication a mere ten or fifteen years ago. It allows me to continue writing my blog, which is my portal to the world. It has even allowed me to continue work as a software developer. Most important, it allows me to communicate with my wife and my two young daughters as they try to deal with my ever-declining health.

As you read this letter, I urge you to please consider the future Americans, one every 90 minutes, who will be afflicted with this cursed disease. Imagine for a moment what it might be like to lose the ability to use your hands, your legs, and even your voice. Then imagine the indignity to have no access to a way to communicate with the world, or your loved ones, other than someone watching you blink as they point to a letter board. And yes, the human spirit is resiliant, and yes, people will make due in extraordinary circumstances, but I remind you that we are alive in the twenty-first century, and I ask you, who in this great country deserves to live with such indignities when the solution to their communication issues are at hand?

I will leave you with this thought: where medical science has failed the patient with ALS, technology has picked up the slack. Where medicine has failed to cure us, technology offers the cure.

Sincerely,
Aaron Winborn

Ask Me Anything about Living with ALS this Tuesday

The National ALS Association (ALSA) has invited me to speak at an online event at Reddit's Ask Me Anything (AMA). Join me in honor of the ALS awareness month this Tuesday, May 13, from 2-3 PM Eastern time, to learn what it's like to live with ALS. Bring your questions, or lurk around to read the Q&A of others. Stay tuned for more details as the date approaches!

Last Year’s Successful Charity Effort is Making a Difference

Hello, My name is Aaron Winborn, and I was the recipient of the Society for Venturism's charity last year, to receive a future cryonic preservation at the facilities of the Cryonics Institute for when the time comes. I'm indebted to many of you for your contributions, and I want to thank you from the bottom of my heart for the peace of mind that this gives me. I still have an albeitedly diminished bucket list of things to do, but I don't stay up fretting over the things I'm incapable of accomplishing, in large part to this assurance. I know the odds are still not in my favor, but at least I have a significantly better chance of revival than if I were buried or cremated.

That said, This past year has been both challenging and a blessing. Challenging because of all the difficulties brought on by having to adjust to the continuing degeneration brought on by Amyotrophic Lateral Schlerosis, ALS, better known in the United States as Lou Gehrig's Disease, or Motor Neuron Disease in other parts of the world. Although I am not yet completely paralyzed, or locked in as they say, I am confined to my wheelchair, and cannot move my hands or arms. My breathing capacity is no longer measurable, and I cannot go for more than thirty seconds without mechanical ventilation before I'm in distress. I am not yet on a vent with a tracheostomy, but we are considering that as the next step to prolong my life. It's a difficult decision to make, however, because of the extraordinary amount of care that I would require around the clock, not to mention the possible loss of a quality of life. It's no wonder that only about ten percent of patients choose a tracheostomy, and only fifty percent of those go on to survive another year.

If that sounds scary to think about, well yes, it is. I could go on with a report of challenges we face, including the utter loss of the ability to speak or to understand spoken language, to the loss of the ability to eat or drink, to the devastation this awful disease has wreaked on my wife and our two young daughters, but I wouldn't be able to do it justice in a few short paragraphs, especially when I want to make sure that I leave space for the good things in my life. So on with the good.

First, I have, after a year or so of giving up reading anything not available on the Internet, have reawakened my love of literature. I've rediscovered the ebook format, and am now devouring about two books a week. Mostly science fiction, but dotted with the occasional contemporary fiction. I'm also still participating in the Drupal community, with a friend who volunteers two hours a week and a tricked up communication device.

Although I have been largely holed up this winter, I still manage to get out every couple of months to see a movie with some friends, and it's been fun sitting at the picture window and watching the girls play in the snow. Oh, how I look forward to the warmer seasons when I'll be able to "walk" the neighborhood again.

I also have been exploring new ways of communicating with my sweetie. Certainly challenging, because of my inability to use the verbal bandwidth, and because so much of her time is taken up as both my primary caregiver and being almost a single parent. On top of that, my day is so broken up and consumed with my caregiving that I find it difficult to even focus on an email that I find myself consolidating my efforts and try to cheat, by counting in my mind a quick CC in an email, or say a mention in a magazine article or a blog post as a valid form of communication. But I know in my heart that doesn't fully count, so I continue to find new ways to let her know how special she is to me.

I am enjoying the simple things in life. I know that's a cliche, but as with all good cliches, there's an element of truth to it. From when our cat decided that my lap is warm and available for napping, to the spontaneous hugs my youngest daughter gives my leg, to watching my older daughter play computer games, to watching my wife's beautiful smile. These are the things that make up life, and I am so excited to have another day of it each morning I awaken.

Stay strong,
Aaron Winborn

This letter first appeared in the latest issue of Long Life magazine: http://www.cryonics.org/images/uploads/magazines/LLV46_N01.pdf

Pirates Aren't Afraid of the Dark

The power went out last night, while Sabina and I were playing pirates. She wore a patch on her eye, and I had my eye closed, and we were both shouting, "Arrh! I'm a pirate!" Ashlin helped translate.

Then the lights flickered off, and Sabina started crying. Michelle picked her up (Gwen was at Lowes) and I said, "Pirates aren't afraid of the dark." That was the best interaction and the first fatherly advice I've had with her in months.

I'm in a period of rapid decline, after a most welcome year of a relatively stable plateau. The changes are noticeable on a nearly daily basis, ranging from a bib to catch my drool, to giving up the bidet for a shower/commode chair, to struggling to find comfort in my new hospital bed, after having finally gotten comfortable sleeping in my recliner. It's been a glorious and busy year. From the Halloween parade of pirates, witches, vampires, and a princess firefighter, to a few concerts throughout the year by my daughters, to watching the entire, what, first six seasons of Mad Men with my Sweetie. I bet you can remember the days when you had to wait an entire, get this, week to watch the next episode of Friends or Mash.

I had a nightmare the other night. I lived in a walled village that was under siege by a pin-headed giant. My father was one of the village elders, and he nominated me to go out and slay the giant. I was afraid to do this, and asked my father why he'd volunteered me. "Because you're the bravest person in the village," said he. But I didn't feel brave. I spent the rest of the night trying to get on with the inevitable fight, because you have to face your fears head on, even in your dreams, but I was instead assailed by some rather inane dreams, except for one with my old friend and mentor Stephen Poplin, who told me to stop worrying, that the fight wasn't scheduled for a week Friday.

The book of the week was Neptune's Brood, which takes place some seven thousand years in the future, after the fourth extinction of the human race. Spoiler Alert: This space opera by Charles Stross has as its protagonist an actuary historian, and features bat-winged insurance underwriting pirates, a shapeshifting zombie high priestess, and bitcoins! The first fiction I've read featuring bitcoins, and it's a doozy, written by the author of such post-singularity works as Accelerondo, Singularity Sky, and Glass House. I highly recommend this sequel to Saturn's Children, and you don't have to read the other one first. But this book has only whetted my appetite for good bitcoin fiction. Please let me know of other such works out there!

Last Week's Reads

This contains spoilers for the Hunger Games trilogy.

I finished the Hunger Games trilogy, and was abhorred, but not surprised, by Katniss' choice to hold a revenge hunger games. I wonder if Hollywood will treat that the same, or if they'll leave that part out. I'm glad for Donald Sutherland's part as President Snow; I can't wait to see his portrayal of his final hours. We have a wait, though, with Hollywood's new formula to extract more money from the masses by splitting the final book of a series into two movies.

Next, I started Greg Bear's Vitals, but wasn't able to get past the beginning. Instead, I read Charles Stross' Saturn's Children, which was a riveting blend of what would happen if Heinleinesque sexbots got ahold of Asimov's three laws of robotics. And I was completely enthralled, as I imagined I would be, by the author of such forward seeking works as Accelerondo, Glass House, and Singularity Sky.

Next up was Twilight, which I promised a friend I would read. It wasn't entirely bad, once the vampire part of the story began, but I'm not certain I'll finish the series.

Enough about books. What I want to say is that when my health declines and I find myself gasping for breath, or in a funk because I can't scratch an itch, I always come back to thinking about how my dad would handle this horrid disease, and that gives me the fortitude to go on, because I expect that he wouldn't moan and grumble quite so much as I.

How to Get Wealthy Beyond Your Wildest Dreams in Two Easy Steps

  1. Buy a Bitcoin.
  2. Die.
  3. ????
  4. Profit!

In the spirit of Open Source, I'm going to share with you the secret that wealthy men have been literally dying to learn since at least the age of pharaohs. How to take it all with you after you're gone. In the interest of disclosure, first let me tell you that I am, as you likely already know, fast on my way myself, having been diagnosed with ALS some nearly three years ago, which has the pleasant side effect of leaving me trapped in a body that has progressively forgotten how to move, before my diaphragms collapse entirely, leaving me in respiratory failure. And ALS could care less that I have two young daughters that I am responsible for raising.

But I'm not here today to tell you about that. I'm going to lay out my two step plan to have glorious wealth, and take it with you at the end. Another disclaimer: I am not a professional financial advisor, and you can take what I offer with a grain of salt.

Okay, on to the nitty gritty. Step one, get a bitcoin or three. Yes, this plan depends on large part on that shadowy currency of Silk Road fame, but we're going to play it safe. Only tie up a small few of these bitcoins, for several good reasons: first, because you don't really want to risk too much wealth in some hair-brained scheme you heard about on the Internet, do you? Secondly, possibly you would like to leave a legacy? I mean, I know that like any good information, once the cat's out of the bag, there's nothing stopping someone from using it for nefarious reasons, but I would hope that you're not seriously considering taking it all with you? I expect you have kids, or plan to someday, or at least have a charity that you would like to leave a bequest to or something? I would change the title of this post, except it's too catchy, and besides, it's too damn hard to make Dasher, the Open Source eye gaze typer that I use, to back up to the top of the page.

The last reason that it's not a good idea to tie up too much wealth is more philosophical than anything, and understanding it requires knowing step two of my plan. You have to die. And by that, I mean you have to die in every current legal and medical definition of death, and then you have your body frozen. And you thought the bitcoin was a long shot? Well, it's nothing compared to what I have in mind.

But let's say for the sake of argument that I'm right, and there is someday a technology capable of reviving the dead, assuming a proper cryopreservation. Hello, everyone's going to want to "die," and let their wealth accumulate a little interest, and be revived a lot wealthier. The living will grow to resent their earnings going to the dead, and the next thing you know, stagnation or revolution, either of which could prove disastrous to our hopeful revivals.

Now that we've read the warning label, let's find out how to take this bitter pill.

I just realized that some of you might not actually know what a bitcoin is, so I'll briefly do it an injustice and mangle a quick explanation. At its core, a bitcoin is a string of seemingly random characters, which many geeks and libertarians have decided to give value to. It's obviously slightly more complicated than that, involving a ledger that is held in the public commons, complex equations that are solved by prospectors digging for this virtual cryptogold, and millions, billions, or potentially quintillions of wallets to store all this cash on your hard drives. But that's just the beginning; look up bitcoins on your favorite search engine if you want a more vigorous definition. For the purposes of our demonstration, we only need to know that a bitcoin is currently trading for several hundred dollars, and that the potential growth on the timescales we're imagining could exponentially rise to levels that might make today's millionaires seem like paupers.

We also need to understand a little bit about computer security. As in, there ain't no such thing.

Let's say, for argument's sake, that you've created a bitcoin wallet, and have purchased a shiny new coin to store in it. Or to be conservative, let's say you've only bought $20 of it, since you don't have to buy a full coin to get in with the bitcoin crowd; this is part of the beauty of the system: each bitcoin can be divided to eight decimal points.

Just what do you do with it? Well, if you're like most people, you leave it on your laptop or smartphone and forget about it, which is fine for a small amount that you might use to buy a pizza or tip a starving blogger. But what happens when a virus hits your laptop, stealing your precious bitcoin for some Russian syndicate? Or you accidentally sit on your phone? Don't say I didn't warn you.

Okay, so the first disaster can be averted by keeping your anti-virus software up to date, and by encrypting your wallet. That's jargon for use a password.The second case is admittedly more difficult to protect against.Bitcoins are irreplaceable if lost, whether by damaging the device it's stored on, by theft, or by forgetting the password.

Unless you have some fancy insurance policy, you're better off forgetting about bitcoins, right? Wrong! I'm happy to report that there is a way to keep your bitcoins safe from nearly any calamity. Keep them in your brain!

What? I hear you cry. Have you gone off the deep end? How do we store a currency in our brains? I'm glad you asked.

I'm not going to go to the details of how to make a brain wallet. There are some good tutorials out there already. But, it is important that I reiterate what I said about there being no such thing as computer security. This truism extends to brain wallets. When choosing your passphrase to store it, you can forget what your grandma taught you about choosing a password.

You basically have the following two choices: memorize a string of fifty random characters, or a sufficiently randomized but easy to remember passphrase with enough entropy to throw off the quantum computers of the future.

What I mean to say is that it will do no good to have a password of only eight characters, or even sixteen, for there are squatters sitting on those already, waiting to snatch up any stray bits that anyone foolish enough to use might leave. Because, there's money to be made in bitcoin, and like the wild west, there are claims and prospectors jumping those claims.

So what kind of password are we talking about? I would suggest at least fifty characters. But don't fret, that's only ten words. And before you pack it up and leave in frustration, because who can remember even ten words, I'll pass on a few tricks. First, let's use a lyric from a well-known song. Say, Twinkle, Twinkle, Little Star.

Before you go and throw away your hard earned cash on a song, another word of warning: don't use any phrase from a popular song or from literature. There are criminals out there just waiting for some easy money.

But that's okay, we're going to mix it up a little. We'll just add a change of phrase, a few random punctuation marks, and the first hundred digits of pi. That should throw them off our trail!

But I can't possibly remember the first hundred digits of pi! Well, yes, you can, but you don't need to. I guarantee that a future that honors bitcoin will also have search engines.

So we end up with the following memorable and uncrackable little ditty: Twinkle, twinkle, Aaron's b!tco!

n, you are my 3.1415926535897932384626433832795028841971693993751058209749445923078164062862089986280348253421170679 in the sky.

And that takes care of step one! I hope that it's a long, healthy time before you have to tackle step two, but if you do, there's always cryonics. And if you choose that route, don't be an idiot. It can be quite affordable to fund it with a life insurance policy.

For the record, although I do have a small few bitcoins, I'm not planning to take more than a couple with me on my minute a million year sleep. The bulk I intend to leave for my daughters on their twenty-first birthdays. If you want to donate towards that end, you can send your bits of bitcoin to this address: 1KmYox1fy3SGVDGhzcok12Xxjk7XThmGGJ.

Stay strong,
Aaron Winborn

Happy Halloween

Aaarrrrh! Shiver me timbers, it's Trick or Treat night, which for the first time since we've moved to this blooming city, falls on Halloween.

The first year we moved to Harrisburg, when Ashlin was four, Halloween was on a Tuesday, I believe, and the Thursday before, we were all getting ready to go out to dinner, when the doorbell rang, and a cute princess held out a basket and said, "Trick or Treat."

Color me surprised, literally fifteen seconds later, and Ashlin would have missed out on Halloween. While I was still trying to figure out what was wrong with the girl's parents, I mean didn't they get the memo that Halloween was still five days away, Gwen was busy throwing on a costume on Ashlin.

A neighbor later filled us in about the peculiar custom in Central Pennsylvania where they celebrate Trick or Treat night on a different night than Halloween.

Ostensibly this is to fool teenaged hooligans who might be interested more in tricks than in treats, because supposedly they're too confused to know which day is Roll your Neighbor's House Night, although I figured for some time that it was secretly because Jesus didn't want little devil worshipping Batmen and Hannah Montanas going door to door with their sacrilegious greetings of Happy Halloween on Halloween. It wasn't until two years later, when Ashlin compared notes with a friend at school that I learned the real reason: different neighborhoods celebrate Trick or Treat night on different nights of the week, which means seven nights of candy heaven for the ingenious kids who can score the rides.

In any case, here it is, Thursday, and the girls are all decked out for their night to stock up on their sweet tooth fixes. Ashlin is a spooky vampire, and Sabina is a fire fighting fairy princess. Except she decided the fire fighter's hat was too hard to keep on.

Gwen is a witch, and I, courtesy of Diana Sheppard, am a swashbuckling pirate, complete with ship, and flying the Jolly Rogers! I was the hit of the neighborhood! Yo ho ho and a bottle of rum, aaarrrh!

Helen Keller with ALS

We have an amazing group of volunteers, who help to make our lives just a little bit more tolerable in the face of the devastation caused by my having ALS. They are coordinated by a smaller group of co-captains who meet occasionally at our house. This afternoon, they met, and asked me as part of the agenda, how was I feeling. I said that I was feeling fine.

I lied.

One of the lesser known facts about ALS is that it, contrary to common wisdom, does have an effect on the brain. I don't know, maybe they say that it doesn't to try to soften the blow when you've been diagnosed with a terminal illness that will slowly rob you of the ability to move a single muscle in your body. "At least his mind will be unaffected."

It turns out that about 40% of ALS patients are afflicted by some cognitive disability, caused by scarring in the frontotemporal lobe. Some 10% experience such an amount of cognitive changes that they are diagnosed with a related illness called Frontotemporal Lobe Degeneration, which ends up resembling dementia. The rest of us experience more minor symptoms, which are normally not even noticed in a clinical setting.

But they are noticed by the families.

At the beginning of my particular journey with ALS, about three years ago, I experienced what I thought at the time was hearing loss. I was not surprised, because my father has always been hard of hearing. Although he attributes it to his nearly thirteen years aboard a submarine with no hearing protection, I figured that it may have had a genetic component. In any case, it had caused just enough conflict in my own home that at the same time I was going to the doctors to find out just why were my arms getting so damned weak, I was also going to an audiologist to find out why I couldn't understand what my wife was saying so frequently.

It turns out that my hearing was fine. Other than a slight loss in upper ranges in my right ear, there was absolutely no problem with my hearing. Except for a slight, inexplicable anomaly: I was unable to understand about twenty-five percent of spoken words. They tried me on hearing aids for a couple of months, but they simply became earwax collectors.

After my diagnosis of ALS, my hearing continued to deteriorate, so back to the audiologist I went. Yet again, my hearing was nearly perfect. Only this time, I was unable to understand fully seventy-five percent of words. According to my wife, this ensued in some hilarity, as the doctor said some things like truck, ice cream, and ball, and I would repeat ridiculous answers such as onions, avocado, and hot dog.

Eventually, Gwen did some research and learned about the potential cognitive losses attributable to ALS. At the top of the list was Receptive Aphasia, which includes the loss of the ability to understand spoken language. My neurologist said that hearing loss is not, no, he said that it is "unequivocally not related to ALS." An assistant of his later admitted that yes, indeed, they have occasionally found patients exhibiting symptoms similar to mine.

So we have adjusted as well as could be expected, given the circumstances. Although it stinks, I have learned that I can sometimes read lips. And the Regal Cinemas have also come to my rescue, offering glasses that project subtitles on the lenses of all their movies. If only life came with subtitles…

But the story doesn't end there. Starting sometime this spring, I learned about another manifestation of my flavor of the curse of Lou Gehrig. For no discernable reason, my eyes shut about ten times an hour, and I am incapable of opening them again of my own volition. My neurologist doesn't know if this is muscular or cognitive. As with the other symptom, this is another rare outcome. About ten percent of patients lose the ability to move their eyes. Although at least he admits that this might be caused by ALS. He told me of a patient who is unable to close his eyes.

To make a long story short, I find myself often trapped in a dark world, filled with mumbling and white noise, as my brain recoils at the sensory deprivation. I found myself at the co-captains' meeting this afternoon, surrounded, blind, by a group of Charlie Brown's teachers, when I was asked how I was feeling. Because it's so difficult to speak, thank you Lou, I lied and said I was fine.

But I'm not feeling fine. I feel sad, and frustrated, and angry, that I am locked out of the world of verbal communication. That I am frequently forbidden from even being a spectator to my life, when my eyes shut unbidden, without an attendant at arm's reach to pry them open. I feel like Helen Keller, but without the benefit of not knowing the difference.

Dealing with Spasticity

Okay, here is my experience with and some solutions to the problem of spasticity, more commonly known as muscle cramping or charlie horses. Other than frozen shoulder syndrome and the recovery from various surgeries, this can be one of the few, albeit annoying, sources of pain suffered by ALS patients. If, like me, you're left in the dark by your neurologist, until it gets to the point where you need medical intervention, fear not, for there are some tricks you can use to make it bearable, or even pain free.

I'm part of the Keynote at Drupal Camp NYC 13

I have been invited to the wonderful opportunity to come speak as part of the keynote address for Drupal Camp NYC 13 this weekend. You should come too, at least if you're in New York, and you have an interest in Drupal, or just want a chance to watch me make a fool out of myself on stage.

I have been invited, presumably, because of my work with the Media project of Drupal. Although I would question their choice, as my work would not have been possible without the work of the giants on whose shoulders I stand, not to mention the work of countless other developers who have and continue to contribute to making the Media project as awesome as it is. I am, as the saying goes, but a drop.

But regardless of my thoughts on the matter, I'm the person they've chosen to come chew your ears for ten minutes on Saturday, July 13, in the evening, following Larry Garfield, one of those giants I mentioned. So please, come to Drupal Camp NYC 13, to experience what it means to be part of the Drupal community, to learn from some of the giants in some of the many offerings available in the sessions over the weekend, to help make history in one of the sprints following the camp, or just to hear an old fool pontificate because the organizers didn't know what they were getting themselves into.

By the way, I've been told that 100% of the proceeds from the camp after expenses will be donated to the Special Needs Trust that has been set up for my family and me, because of my ongoing struggles with Amyotrophic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig's Disease. Just one more reason you need to be there. Plus, you'll get to hear me do my Stephen Hawking impersonation with the speech assist device I'll be using. Now if only they could make a speech-writing assist device...

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The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.