aaron's blog

First, some background. My name is Aaron Winborn, and I am a developer for Drupal, which is an open source content management system, used to make web sites. I also the father of two young girls, who bring much joy into my life, and married to a beautiful woman. You may have heard of her, her name is Wonder Woman.

Just over two years ago, I was diagnosed with ALS, also known as Lou Gehrig's Disease. In short, that means that my mind will increasingly become trapped in my body as the motor neurons continue to die, and the muscles atrophy and waste away, until my diaphragm dies, bringing me with it.

My hands and arms are already completely paralyzed, and I'm confined to a power wheelchair. My diaphragm strength is largely diminished, and I am using breathing assistance 24/7, and I am at imminent risk for respiratory failure.

Even if I am fortunate enough to survive another year, which is only likely if I opt for a tracheostomy, my chances of surviving much longer become increasingly unlikely, as pneumonia becomes a specter haunting the late stages of ALS. There is no cure for this awful disease. My family gets to take care of all my needs and wipe the drool off my face, until I die, and leave them to pick up the pieces.

But yes, there is a silver lining to this all, such as it is. Kim Suozzi made a similar plea to the Internet a year ago today, and came up with the brilliant idea of freezing her body in the hopes of a distant advanced technology being able to revive her someday. Her body now rests at liquid nitrogen temperatures. http://www.reddit.com/r/AskReddit/comments/uvaqe/today_is_my_23rd_birthd...

I approached the organization responsible for raising the funds to help her out, the Society for Venturism, last November, and they agreed to take on my case as well. http://venturist.info/aaron-winborn-charity.html

But I am actually telling you all this in order to come up with a sort of reverse bucket list.

I've had a full life, with no regrets. I've done some travel, have lived in some cool places, like the Netherlands and London. I've made lots of good friends, and continue to do so. I've contributed to my debt to society, working hard throughout my life, as a teacher, a waiter, an open source software developer. I've worked with a few interesting characters, like Elisabeth Kubler-Ross, and even lived in a Buddhist monastery before I met the woman of my dreams.

But I'm not ready to hang up my jacket quite yet.

When I was ten, I came up with three things that I wanted to be when I grew up: a teacher, a writer, and an astronaut. I've been two of the things, which is not bad. As an aside, I once told that to some people, and was asked, "Oh, what did you write?" To which I replied, "I didn't say I've written anything."

Joking aside, I'm looking for some grandiose ideas of things to do after I've died, and have hopefully been revived. And by that, I mean the sky's the limit. Don't worry about whether something seems technically feasible. This is your opportunity to think big. Like, go skinny dipping in the methane oceans of Neptune.

I want to do so much more with my life, but it's not in the cards this go around. I've become a spectator in life, living vicariously through my daughters, and relegated to typing with my eyes at fifteen words per minute on a good day.

But I'm not complaining. I awaken each morning as I always have, excited to take on the day. This is just a way to do some more brainstorming, to come up with a list of things to do during the next century, should we be so fortunate.

Stay strong,

Aaron

PS This question was originally banned from the Internet at http://www.reddit.com/r/AskReddit/comments/1g7h69/anything_awesome_i_sho...

I just got an amazing email from AaronElBorg, a fellow Drupaler, father, and proponent of cryonics, who is also in the Seattle-based band, Glose.

AaronElBorg has placed a geas on me to remember that there is to be a song written in my honor called Wake Up Winborn, and in the ultimate treasure hunt, to look for it after my passing.

Now how cool is that? What an honor, to have a warrior's anthem written after your passing? With the challenge to find it afterwards?

Some may call it a fool's errand, and perhaps I am the fool, but I prefer the Tarot's version of the Fool, with one foot perched precariously off a ledge, ready for a journey of epic proportions, a dog nipping at his heels.

In any case, you'll most likely get to hear it before me. Eventually, I hope to be able to sit down with AaronElBorg and have a beer while we listen to the song, but a lot will need to happen before then. First, we'll need to sufficiently conquer or at least stave off physical death. For me to be able to take advantage of that will also require that we have found a way to reverse death, to the extent that we can repair any damage from the freezing process involved in my planned cryonic preservation. And we'll also need to have kicked the crap out of ALS. Alternatively, found a way to upload our consciousness to a computer or robot or some other containing form.

Tall order to say the least. But even before I can have the chance of partaking of this hypothetical revolution of medicine, we must raise the funds to freeze my body. That's where you come in. A journey of a thousand miles begins with a single step. And even though I can barely take a single step, I am doing my best to walk that long journey, but I need your help.

Please help-- your donation will be doubled with the matching grant posted by Longecity of a thousand dollars.

Thanks, and Rock On!

Hello,

Welcome to the stupid club. So you're at what, a month now? That sucks, my heart goes out to you and your family. I imagine the shock is over now, and you're probably slowly moving towards an acceptance. The first thing I want to say is that your neurologist doesn't know crap. Oh, he or she probably knows a lot about the mechanics of your disease, but what I mean is that they don't know diddly about anything important, from even what caused your neurons to begin to die off. Let alone have the first idea of what to do about it.

Remember that you are in charge of your treatment. And even though there is not much that can be done medically for you, there is some that can be done. Rilutek, yes, since you're bulbar onset. But also, technology holds the only real hope for you.

I used to use Dragon Dictate to control my computer, but now I have switched to an eye gaze tracker exclusively. If I become one of the lucky ten percent to lose control of his eyes, there's brain computer interface, still fledgling but very quickly improving. More importantly, there's the Bipap, which I depend on now to keep my breathing going. And soon, I'll need to have a tracheostomy if I want to go on with this sweet life.

But these are easy to learn about, and even though your doctor doesn't know jack, this is something they can actually do. It's the little things, though, that you'll need to learn about. The things that your neurologist will probably skip telling you about, or tell you about as an afterthought. And it's because your neurologist doesn't have ALS.

Like you'll want to get a bidet as soon as possible. This little device offers me the last bit of privacy and shred of decency. Or the sleeping situation, which you will need to adjust to and experiment with constantly. You'll need to discover for yourself if the bed will work for you, or if you'll need to sleep in a recliner, or even your wheelchair. And be forewarned, the most difficult part of this illness, for me at least, is your ability to get a good night's sleep.

I haven't begun to do justice to what you'll need to learn. There's so much more, like make sure that you get your arms stretched daily, and don't forget your wrists and fingers, if you don't want to end up with claws at the end of your arms. And get a Vitamix to make green smoothies, and don't let them tell you that the cans of so-called food they will inevitably shove down your feeding tube are adequate nutrition. That crap is nothing more than corn syrup and multi-vitamins, and fifteen dollars a can, nonetheless.

I am so sorry that you have been diagnosed with ALS. I wish it were in my power to reverse that terrible death sentence. No, it's worse than that. It's a punishment where you get to slowly watch your body dissolve, as you are forced against your will to become a spectator in life, as the people around you can only watch helplessly as the man they know and love becomes trapped in a hollow shell of a body, and they can only wipe your drool and help dress you like a rag doll, knowing that at the end, which is approaching far too quickly, they'll have nothing left to wipe than their own tears.

But it's not all bad, before I drive you to think there's nothing left to live for. To the contrary, as difficult as my life has become, it's nothing compared to my wife's, Gwen. Or should I say Wonder Woman. She not only has to grieve the little losses every day, and try to pick up the pieces as quickly as they fall, she has to take care of our two young children and me, and take care of the bureaucratic tangle of health insurance and Medicaid, and deal with countless phone calls, as I am no longer able to speak on the phone. And she bears the brunt of my restless nights, unable to even nap during her hectic afternoons. And that is all on top of her full time job and night school as she pursues her Masters.

No, there are lots of little joys in life that fill me up. I relish the time I get with my wife and daughters. Even though it is, by virtue of my physical limitations, as a spectator, these little moments are priceless. Although it comes with a corresponding and utter loss of privacy, I enjoy the company of my nurses, volunteers, and other visitors.

And the retirement is not all that bad. Although it's not at all what I imagined, and it's been thrust on me twenty years too soon, and I've had to make hasty adjustments to my bucket list, there are still good things about life. I still wake up excited about the day, and have a growing list, albeit limited, of projects I want to complete. Like books to write and programs to code on the computer, and even drawings to paint with my eyes.

I hope that my life stands testimony to the resilience of the human spirit, which cannot be killed, even when the mind is trapped in a body unable to lift a single finger in protest. And that even in a world that at times seems harsh and uncaring, that that same spirit grows ever stronger, vigilant against the injustices in the world, ever watchful for the joys it can bring to its fellow man, ever hungry for the simple pleasures to be found in life.

I will conclude with the story I learned in my sojourn in a monastery about a decade ago, of a monk who was being chased by bandits wielding swords intent on killing the monk. They chased him right off a cliff, and he caught onto a branch. The monk looked up, and saw the bandits above him, brandishing their swords and shouting curses at him. He looked below at a ledge beneath, on which paced seven hungry tigers, growling as they waited for the inevitable fall of the hapless monk. And then he looked at the branch to which he clung, and he saw a butterfly. "How beautiful," he said to himself.

Stay strong,

Aaron Winborn

Before I begin writing this, let me start by saying that I have officially given up wrestling with Dragon over control of my computer. Nuance has made an excellent piece of software, and I have no complaints, as it has served me well over the past year and a half. It's just that my voice has degraded to the extent, thanks, Lou Gehrig, that the computer no longer recognizes what I say with any reasonable accuracy. So how are you typing this, I hear you wondering?

I'm glad you asked. World, meet Dasher, the marvel of the twenty-first century. Dasher is an Open Source piece of software that works in conjunction with my eye gaze tracker to allow words to fly across the screen. I'm up to about twenty words a minute, with improvement every day.

My very first memory in life is when I rode on the back of a sidewalk chalk giraffe. I'm sure you didn't see that coming.

Well, it's true. It happened when I was almost three. March 11, 1970, to be exact.

It was dark, I remember. The giraffe was friendly, of course, though you would have already guessed that much, for what other sort of sidewalk chalk giraffe would allow a toddler on its back?

(This image was created by myself with my eyes only, in case you're wondering.)

The giraffe had spots all over its neck, messy yellow and pastel purple spots, just like you would expect. Big round circles, drawn roughly, the sort that typically sport the back of a giraffe of that rare species.

I hold the memory dear, and when they make the movie of my life, I hope they get it right and animate this wild boy riding the sidewalk chalk giraffe of his dreams.

Oops, I gave it away, didn't I? About the dream, that is. And without a spoiler alert, even. Sorry about that.

The rest of that memory becomes a little hazy to me. I do remember the shock of light flooding the playhouse, moments before being lifted rudely without my consent and taken outside.

This is the part where I cannot completely trust my memory, because I first of all remember the rest of this in black and white, and correct me if I'm wrong, but I'm pretty sure that color had been invented well before 1970.

Second of all, although I remember my father telling me that there was someone he wanted me to meet, as he carried me out of the playhouse and away from my sidewalk chalk companion, the memory clearly shows my father standing a bit away, opening the door of a strange car, maybe a taxi, and with a red beard and his sailor's uniform, dashing, but, I hear you complain, how could you know his beard was red if the world was black and white? Bear with me, this is the way that ancient memories of childhood persist.

And finally, I remember quite clearly that my father was still holding me as he opened said car door. What, you ask, dear observant and slightly skeptical reader? Are you implying an out of body experience?

I make no such claims. In fact, I make no judgements of value to this memory. I simply accept it as it comes flying across the decades to this man, sitting in his wheelchair and reminiscing on that far away time, when he could still walk, could still grasp tightly to his father, and had fanciful dreams of being a zookeeper or a sidewalk chalk artist.

And now if you'll forgive me, it's time I take a brief rest, for I've just learned that Dasher interprets my tears as an indication to cause the letters to cascade in a mixed up clutter of word salad at the bottom of the screen, and I am unable to wipe my eyes without assistance.

But wait, I hear you cry. You can't leave us hanging. We don't know who your father wanted you to meet? And please, tell us more about that giraffe.

Well, since you ask so nicely, gentle reader. After all, the cliffhanger is but a cheap literary trick whose sole purpose is to sell the sequel, and besides not wanting to be seen as cheap, I'm not interested in causing undue stress. So let me wrap this up, and in a tidy package with a bow, nonetheless.

So it might have occurred already to you, astute and forgiving reader, that the person my father wanted me to meet may have been a new addition to the family, such as a younger sibling or a puppy or a visiting aunt. And right you are, there's no pulling the wool over your eyes.

In fact, the next part of my fuzzy memory is just that, although you have to remember that even though this memory is brought to you by a forty-five year old man, comfortable in his cliches, it comes from a very, very young child, in fact about the age of his youngest daughter, who should be getting home from daycare in a few minutes.

My father, still holding me from my distant vantage point, if you will recall, opened the door to the cab, an old black and white, if my memory serves me, and my mother, strangely skinnier than the day before, stepped out, holding this tiny, tiny baby. And I remember my dad saying, "Aaron, Meet your new baby brother."

Now we all know how memory works, and we know that some memories are better than others, and that some memories shift and turn in our recollections, transmuting into weird shapes as we try to reclaim them from the hallowed shores of youthdom. And some interlopers, fancy doppelgangers come unbidden in the night to place themselves in our minds, are not even ours.

But regardless of the glaring inconsistencies and window dressings enshrouding this treasured memory of mine, two things have stood the test of time, entrenched in the clarity of hundreds of late night meandering recollections. The first, as I have already relayed, is that as impossible as it sounds, I clutched that sidewalk chalk giraffe's neck tight and rode it through some lazy afternoon nap.

And next, and this is probably the reason the memory has even bothered to persist across the decades is this: the thing that stands out most to me is a vague feeling of annoyance that they dragged me away from my adventure with that sidewalk chalk giraffe for this?

And there you have it, dear and gallant reader, the defining oldest memory of mine, this sanctuary that bears me through difficult, long nights, this persistence of memory.

Last night, I was sent an email from a friend whose email was hacked. I am seeing a lot of that in the past year or 2, so I thought I would share my response to help train folks into better password habits. And seriously, I think that it would be a good practice to install the Password policy module on all your Drupal sites, to help enforce better habits for everyone. That module can be configured to force passwords similar to what I described here, and much more, such as requiring that passwords be periodically changed.

Dear (Friend),

I got those emails, it does look like it's possible that your email was hacked. You did the right thing, by changing your password. However, we need to do a few other things to try to minimize the damage.

1st, it is entirely possible, in fact probable, that they did not actually hack your computer. Identity theft is rampant, and in this interconnected world, does not even require any access to your computer.

That said, it is still possible that your computer has a virus. That would be the 1st thing to check. If you have an antivirus program, you need to ensure that it has been updated. That may require a fee, if you are using a paid antivirus program subscription.

If you do not have an antivirus program, I would highly suggest Avast, which I have been using for years. You can safely use the free version of it, as it is not crippled in any way from the paid version. You can find it at http://avast.com.

After, and only after you have scanned your computer for viruses, then you can get on with the business of securing your accounts against identity theft.

You will need to change your email password yet again, I am sorry to say. Additionally, you will want to change the security questions, which I believe that Yahoo will ask.

Treat the security questions as passwords in themselves, as these are most commonly used to hack in to an email account. That means that you should not use anything resembling what they actually ask for, such as your mother's maiden name or your 1st dog. That can be discovered with Google these days.

Next, a word about passwords. As you may have heard by now, you need to have a password that cannot be guessed. Unfortunately, that is not enough. You also need to have a mix of cases, at least one number, and a special character, such as a punctuation mark. Additionally, you need to have a different password for every account that you have.

I cannot stress that last paragraph enough. It is too easy for a hacker to get into, say an account with a forum, and use that to get into your Wells Fargo account. For instance, to use myself as an example, about 6 years ago, I accidentally broadcasted my password into a chat room, and about 2 weeks later, I got an email from a woman wondering where her Gucci bag was that she had purchased from my eBay account. It turns out that someone in Russia had hacked into my eBay account and listed about 100 fake Gucci bags.

I know that this sounds daunting, but it is necessary. Fortunately, you can use what is called an algorithm to remember your dozens of new passwords that you'll need to create. You can use that to create a new password for any site, and you will always remember it. Additionally, it will be secure for all intents and purposes.

Basically, you will choose a passphrase, modify and, and apply it to any site. For example, and please do not use this example, let say you choose "apple" as your passphrase. We will modify that to have a punctuation mark and a number, so that it will be "@pp1E". Then you would append that to the 1st 4 characters of whatever site that you are creating an account for. For instance, for eBay, your password would be "ebay@pp1E", and your Hotmail account would be "hotm@pp1E". This will make your passwords immune to so-called dictionary attacks, where they try to figure out your password by entering random words from the dictionary.

Much easier to remember, right? And for your financial accounts, I would suggest creating yet another algorithm, as an extra layer of protection.

You can apply this same idea to those security questions that you see everywhere. Basically, you do not want to actually use a real answer, because it is far too easy for a determined hacker to read about that experience in your 1st car that you posted in Facebook. Instead, treat them with the same respect as your passwords. For instance, you might create an algorithm with your grandmother's cat's name that you apply to a site's question for referring to your own pet.

Once you have done this, you should be fairly safe.

Good luck.

As a postscript, and not to deflect responsibility, it is entirely possible that your email was not the one hacked. It may have been a more intelligent hack, where someone hacked into someone else's Facebook account, for example. From there, they may have grabbed the contacts and spoofed an email from it, sending spam and making it look like it came from yours. This is a more insidious form of identity theft that is becoming more common. Still, the best defense is to secure your passwords.