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Recovery
Process Recovery
Journals
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Our
Story David has surpassed every prognosis he has ever received during his recovery. He now lives in an apartment with other brain trauma victims, swims five days a week, walks where he wants to, attends rehab, and is looking for suitable work. He is learning to cope with some of his deficits, and he continues to overcome others through rehabilitation and hard work. His recovery is astonishing, even miraculous. By all accounts, my brother should not be alive today, yet he is pursuing an active and (we hope) fulfilling life. How has this happened? A key component of his recovery came about almost by accident. I built an online recovery journal that rallied hundreds of people around the country to David's support. www.smotty.com While sitting uselessly in the ICU waiting room, I wrote an email describing what we knew of his accident, his current situation, and his prognosis. I sent this message to a very few friends and family when we got to the hotel room that night. By morning we had received 15 messages of support, about half of them from people not on my original list. We called the ICU to check his status, and I sent another message to the larger mailing list that morning. This message, too, was forwarded far beyond the circle of people that I knew. When we returned to the hotel that evening, I sent the day's report (there was no phone line or Internet connection, mind you, in the hospital), and received over 30 messages in response. The next evening, we received over 70 messages. These messages were all well-informed because the senders had all received the most current information that we had. Therefore, all of the messages focused on celebrating David and on supporting us, his family. My father, mother, sister, her husband and I would sit or lie around the hotel room, passing my computer back and forth reading these messages of support aloud to each other. We read stories about how David had helped a friend in college, or played a trick on a buddy, or made everyone feel better in a crisis, or made a fool of himself in one way or another. We sat in that dingy hotel room and were surrounded by the love that all of these people (many of whom we had never met) felt for David, and we laughed and cried with each of them. Each morning, then, we would carry that love back to the sterile hospital, back to the ICU with the armed guard, and back to David. These stories kept us focus on the David that was trapped inside that comatose body. And we would tell him these stories as he lay there lifelessly, and we could laugh with him or speak soothingly to him and surround him with as much love as we could muster. And most importantly, we did not need to spend all day on the phone. Loved ones around the country desperately wanted to know the latest news, but by sending it out on email, and then posting it on the website, we gave everyone the comfort of knowing that they would get the next report as soon as I could find a phone line. So after we talked with the doctors, and they told us that it really wasn't looking so good, we could type that message once and send it -- we did not have to give voice to that message over the phone, over and over to concerned family members. Imagine the psychological effects of this on a mother -- having to use her own voice to tell people the doctors' dire predictions. "My son has had a setback today." "My son's brain pressure is high and he's doing more damage to his brain." "My son developed meningitis today." Now, imagine a mother having to repeat that message ten times to ten different people. How can that repitition not tear apart the mother's hope and resolve? How can the mother then go back into the room where her son is lying and look at him in the same way? We avoided this situation. We simply sent out regular updates onto our website. Then when we did talk to people on the phone, they already knew what was going on, and they could simply voice love and support to us. These dynamics are subtle, but incredibly powerful. David's website became a bit of a phenomenon. People began to include reading the "morning report" in their daily routine. Friends passed the web site on to other friends, and we received many messages from people that began, "I've never met Dave before, but I saw the website today..." Smotty.com was passed around offices, social networks and churches. David's name ran rampant through at least couple dozen prayer chains. We could never have spread the word so broadly without the website. We could never have maintained such high interest in David's plight without the website. And while I don't pretend to understand the spiritual inner workings of the universe, I cannot help but believe that having thousands of people sending positive thoughts and healing prayers towards David contributed significantly towards his recovery. In the last two years, David's website has received over 52,000 visits. We still update the site periodically, to let people know what's new, when he might be in New York for a visit, or when he's feeling lonely and really would like some visitors. I am told that many people still check on the site weekly. In December 2002, while in San Francisco, Kristen Bergquist (now Kristen Smethurst) and I met with Dr. Geoff Manley, the neurosurgeon who first operated on David after his accident. The gist of this conversation was that David's case is not altogether uncommon. Brain trauma happens all the time, to over 2 million Americans every year. The costs to society are astronomical. And many patients who, like David, are classified as "non-survivable" upon admission to the ER are often given up on by doctors. There are very few resources available for brain trauma victims. The resources that exist are disorganized and difficult to find. There is no "American Brain Trauma Association" like there is a Heart Association or a Cancer Society. There is not a National Institute of Health dedicated to trauma, even though trauma is the leading killer of Americans aged 1-45. Brain trauma also represents a significant percentage of the injuries that military veterans sustain and cope with for a lifetime. The conclusion is that brain trauma is an epidemic, but very little is being done about it. Almost nothing is being done for patients and their families, especially beyond the critical care stage. "Anything that gets done in this area will be a huge step forward," said Dr. Manley, "because nothing is being done today." Kristen and I left this meeting with brains a-buzzing with ideas. After a number of discussions, we decided this was an effort we wanted to support. Therefore we have made a pledge to raise $100,000 in 2003 to fund the development of an Online Recovery Journals tool to support brain trauma victims and their families. We will use these funds to launch a non-profit organization to build and manage this tool into the future. This organization's mission will be to support victims and their families, and to raise awareness of brain trauma. The first phase of this organization's work is the development of the Online Recovery Journals. We are asking for $100,000 in donations from individuals. This grassroots support will demonstrate the importance of this issue and the value of this tool. We thank you for all of your help. Jay Smethurst - jsmethurst@recoveryjournals.com |