The Frustration of Wanting to Fix Things
I’ve been trying to be on the forefront of Trauma Survivor Issues for some time now. The first step was to start this blog and the now defunct traumasurvivor.org—a stab at a community venue for survivors. The trauma survivor community clearly wasn’t ready to jump out and be heard. I guess that’s my first point of frustration. I now clearly understand the hurt, frustration and isolation that Trauma Survivors face, and it seems to me generally speaking that almost to a person, Trauma Survivors are pretty much convinced that they are on their own; that their situation is something they won’t find any help with what they’re facing and going through which is clear truth, not just opinion.
As a member of the Consumer Advisory Board of the American Trauma Society, I know that help is on the way, and in fact is here for at least some new survivors lucky enough to be treated in a Trauma Center that has active components of the Trauma Survivors Network, but it has been slow going for the program. The promise of an active website for the TSN this summer fades with summer itself. The end result for me is having so much hope and inside knowledge that things will soon change. Still, I find it very frustrating waiting and waiting for things to move along.
Even once the Trauma Survivors Network begins to blossom, there will be something of a paradigm shift in surviving trauma. That’s still sometime in the future. The need is great, the need is now. It’s of ultimate importance to me that this happen sooner rather than later. Even my desire and efforts to bring the TSN to the Ryder Trauma Center locally has been frustrating with little to no results so far. There is a very clinical approach, and I’m trying to get through a heart issue. There seems to be very little interest there in issues of the heart. I’ll continue those efforts there, and at some point hope to find the office door of a human heart that has the power and vision to set the process in place.
In the meantime, not enough is being done. Not by me, not by trauma centers, not by the American Trauma Society, none of us.
I’ve been thinking through this dilemma and I really believe the only way to break thorough the slowness and clinical approach to the issue, and that is one of a grass roots movement. What I would really like to do is establish a non-profit to affect and start to fill this void. As I see it, what is really needed is movement and organization by the grass roots, by the survivors. Putting together an organization to do this is a vision I’m now at the very begriming of undertaking. As I see it, this organization should:
This is no small vision. I’m not even sure I can start, much less pull it off, but I’m more and more convinced that it needs to be done and it certainly should be done. My resources are slim at best. Working an hourly job at a meager hourly wage, I’m not even sure I can pull together the resources to apply for the non-profit status with the IRS. If and when I do this, I’m not going to try to undertake the application process by myself. I want the best shot of it being approved first time through and quickly. Pulling together the funding is nearly impossible until that non-profit status is applied for and granted. So I’m currently in a catch-22 of sorts.
Anyone out there with resources they want to share towards this vision would be welcomed indeed. In fact, any other survivors out there with or without resources that think they can share the dream, I’m open to partnering with anyone out there who’s sole burns for these issues.
With the American Trauma Societies efforts, there exists the possibilities that trauma survivors may at one point finally get the resources that every other major disease out there now has. The time has come, WE the survivors out there need to step up and make sure this happens. With my vision of a grass roots effort, all these things can come to fruition a lot sooner than they otherwise would, but I need some help getting it going. I’m well connected with the ATS as a member of the Consumer Advisory Board, I have no doubt that I can put together an amazing board for this endeavor just through the contacts I have, all I need to do is get to the point where this vision can get off the ground.
Wilk – You’re doing such important work! I agree with you that the world of the survivor is complete isolation. After almost 30 years I’m just coming out of mine. Keep up with your vision! (What happened to the TSN website? When will it go live??)
Thanks Michele!
I really have no idea when the TSN website will open. Site still says “Summer 2008″ but obviously that goal was not met. At the National Trauma Meeting in May, they were really hoping for July. I’ve heard noting since, all I know is from my perspective theyr went the wrong direction infrastructure wise and are having problems pulling it together.
There are several Trauma Centers in various stages of implementation of the TNS right now. I hope they can get it working soon.
TraumaSurvivor.org will be among the first to announce it, I hope it’s very soon.