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