Open Source Software Developer with Terminal Illness Hopes to Opt Out of Death
So maybe you've heard about my plight, in which I wrestle Lou Gehrig in this losing battle to stay alive. And I use the phrase "staying alive" loosely, as many would shudder at the thought of becoming locked in with ALS, completely paralyzed, unable to move a muscle other than your eyes.
But that's only half the story. Wait for the punchline.
As if the physical challenges of adapting to new and increasingly debilitating disabilities were not enough, my wife and two young daughters are forced to watch helplessly as the man they knew loses the ability to lift a fork or scratch an itch, who just two years ago was able to lift his infant daughter and run with the 7-year-old. The emotional strain on my family is more than any family should have to bear. Not to mention the financial difficulties, which include big purchases such as a wheelchair van and home modifications, and ultimately round the clock nursing care, all of it exacerbated by the fact that we have had to give up my income both because of the illness and to qualify for disability and Medicaid.
Meet me, Aaron Winborn, software developer and author of Drupal Multimedia, champion of the open source software movement.
Years ago, I worked for the lady of death herself, Elisabeth Kübler-Ross, the author of On Death and Dying. Of course, I knew that one day I would need to confront death, but like most people, I assumed it would be when I was old, not in the prime of my life. Not that I'm complaining; I have lived a full life, from living in a Buddhist monastery to living overseas, from marrying the woman of my dreams to having two wonderful daughters, from teaching in a radical school to building websites for progressive organizations, from running a flight simulator for the US Navy to working as a puppeteer.
I accept the fact of my inevitable death. But accepting death does not, I believe, mean simply rolling over and letting that old dog bite you. Regardless of the prevalent mindset in society that says that people die and so should you, get over it, I believe that the reality we experience of people living only to a few decades is about to be turned upside down.
Ray Kurzweil spells out a coming technological singularity, in which accelerating technologies reach a critical mass and we reach a post-human world. He boldly predicts this will happen by the year 2045. I figured that if I could make it to 2035, my late 60s, that I would be able to take advantage of whatever medical advances were available and ride the wave to a radically extended lifespan.
ALS dictates otherwise. 50% of everyone diagnosed will die within 2 to 3 years of the onset of the disease. 80% will be gone in 5 years. And only 10% go on to survive a decade, most of them locked in, paralyzed completely, similar to Stephen Hawking. Sadly, my scores put me on the fast track of the 50%, and I am coming up quickly on 3 years.
Enter Kim Suozzi.
On June 10 of last year, her birthday, which is coincidentally my own, Kim Suozzi asked a question to the Internet, "Today is my 23rd birthday and probably my last. Anything awesome I should try before I die?" The answer that she received and acted on would probably be surprising to many.
On January 17, 2013, Kim Suozzi died, and as per her dying wish, was cryonically preserved.
She was a brave person, and I hope to meet her someday.
So yes, there we have it. The point that I am making with all this rambling. I hope to freeze my body after I die, in the hope of future medical technologies advancing to the point where they will be able to revive me.
The good news is that in the scheme of things, it is not too terribly expensive to have yourself cryonically preserved. You should look at it yourself; most people will fund it with a $35K-200K life insurance policy.
The bad news for me is that a life insurance policy is out of the question for me; a terminal illness precludes that as an option. Likewise, due to the financial hardships in store for us, self-funding is also out of the question.
When I learned about Kim Suozzi's plight, I reached out to the organization that set up the charity that ultimately funded her cryopreservation. The Society for Venturism, a non-profit that has raised funds for the eventual cryopreservation of terminally ill patients, agreed to take on my case.
Many of you reading this post have already helped out in so many ways. From volunteering your time and effort to our family, to donating money towards my Special Needs Trust to help provide a cushion for the difficult times ahead.
I am so grateful for all of this. It means so much to me and my family to know that there is such a large and generous community supporting us. I hate to ask for anything more, especially for something that may seem like an extravagance.
But is it really an extravagance?
If I were to ask for $100,000 for an experimental stem cell treatment, I doubt that we would even be having this conversation. No one in their right mind would even consider a potentially life-saving procedure to be an extravagance.
And what is cryonics, but a potentially life-saving procedure?
People choose from among many options for their bodies after death. Some choose to be buried, some choose cremation. Some choose to donate their bodies to science. That last is precisely what happens with cryonics: in addition to helping to answer the obvious question of will future revival from cold storage be possible, many developments in cryonics help modern medicine with the development of better preservation for organ transplantation and blood volume expanders.
Yes, I admit that the chances of it working are slim, but have you looked at the state of stem cell research for ALS lately? Consider that the only FDA approved medication to treat ALS, Rilutek, will on average add 3 months to one's lifespan, and you might begin to see my desperation.
But you should be happy with the life you've had. Why do you want to live forever?
The only reasonable response to that is to ask why do you want to die?
I love life. Every morning, even now with my body half paralyzed, I awaken with a new sense of purpose, excited to take on the day. There is so much I have yet to do. There are books to write, games to create, songs to sing. If I can get the use of my arms and hands again, there are gardens to plant, houses to build, space ships to fly. And oh, the people to love.
So please help me to realize this, my dying wish.
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
- Elisabeth Kübler-Ross