Last summer, I wrote a diary called Killing Alan: Suicide by Spreadsheet. Alan has a spinal tumor that's very difficult to operate on because of its location and type, and it's responded only very, very marginally to repeated radiation treatments (which he does not want to undergo again). He has no insurance, and no way to afford the potentially $500,000-$1 million costs in one of two surgical sites in the U.S. that could offer a possible treatment for his specific tumor type and location. His family was doing without some very basic things in order to pay for his medical care and medications. After an incredible two-week journey into the mountains to think about his situation and his future, Alan had just decided that suicide was the most practical option in light of the staggering cost his care was exacting from his family.
Alan's life has changed since I wrote that diary -- changed because of this amazing community of Great Orange Heart & Soul.
He's doing well, he sounds great. The tumor is still there and still growing, but my brother has decided it's practical to stick around a while. He's fighting again, and he has hope.
Within minutes of my diary last June, the DailyKos community responded beyond anything I could have imagined, much less expected. Although I had no intention of asking for or accepting donations, within a few days, more than $3,000 in donations poured in -- as well as offers of assistance with airfare and accommodations to Mayo Clinic and Ohio State University's hospitals/clinics for treatment. (Some even offered assistance if he chose to come to Europe for free care.) People offered invaluable advice about pharmaceutical assistance programs and other information. Someone paid for his family's electricity through the end of 2008.
At first, Alan was pretty angry at me. A very self-reliant person who duct-tapes tools to his increasingly paralyzed right hand so he can continue to work (I am not making this up -- is he amazing or what?), Alan did not want to accept "charity." And even though the donations came in anonymously, he figured I was behind it, so he didn't talk with me for few weeks and I had to talk on the sly with his wife (who's also amazing, by the way).
But soon he became more comfortable about accepting advice and assistance. The information about pharmaceutical assistance programs was particularly valuable, and his medication costs are now down to less than $100 a month. He's also talked with a couple other doctors about the possibility of going to Mayo Clinic for surgery. This is a huuuuuge change from last summer, when that seemed like such an impossibility that he didn't even want to talk about it. Now he's seeking information about it!
Despite increasing disability, Alan continues to work, though he has learned to delegate more. He's is a cabinetmaker and ... well, geez, how do you describe someone who finds the secret essence of beauty inside wood and brings it to life? (A few of you who contacted him directly may have received one of his incredible inlaid wooden jewelry boxes and can attest to his talent.) He's organizing a public art project in the Bryce Canyon area to build a 30-foot-tall picnic table in the woods that will serve as a rest area for people who hike into the woods to appreciate all that's there. Initially, he'd planned to build it himself with some help from local youth organizations, but now he's letting the kids do most of the heavy work while he guides them.
On Election Day, Alan told me that he'd voted for the first time in his life -- and he voted Obama. We talked about health-care reform, and he charged me with keeping up efforts to make sure we get a better brand of health care in our country. Our kids shouldn't have to go up into the mountains with a gun as the most practical treatment option for them.
Thank you all for a year with my brother that we didn't think we'd have. Hope comes in orange.