Excuse the sacrilege – it’s just how I feel. Last week was a tough week in HPSland. We lost two HPS’ers. Although I didn’t know either of them personally, the loss of anyone with HPS affects me. I’ve debated about whether to blog about it as most HPS’ers didn’t know either one of these people and I don’t want to upset everyone when there’s no need.
But, I feel it’s the right thing to do – whether we knew them or not. They were part of “our army” and they were the brave ones that went before us. They are the ones that have helped to pave the way for better treatments, and one day the cure. How can we not honor them?
Although my grief isn’t of a personal nature, I can’t help but react. Last week we were having all sorts of troubles with the magazine, troubles that ordinarily would have me plastered to the ceiling – and yet in the wake of this wake up call, no problem at work seemed really that important.
Every day since leaving NIH I’ve thought about my pulmonary function tests and how wonderful they were. But these two losses were a sobering reminder of just how lucky I am right now. They are a sobering reminder of just how much work we have left to do, and just how urgent it really is.
My grief reaction, having not known them personally, isn’t so much wailing and tears – it’s frustration. I’m frustrated that I have such an important task to work on every day, and yet it’s the thing I do at night, after work, when I’m tired and not always totally on top of my game. I’m frustrated that the most important thing in my life, working to help find the cure for HPS, constantly takes a back seat to mere financial survival. We need to do more and we need to do it now. It truly is a matter of life and death.
And to the two that have gone before us – salute. We honor you both and all that you did to help us in this journey.
But, I feel it’s the right thing to do – whether we knew them or not. They were part of “our army” and they were the brave ones that went before us. They are the ones that have helped to pave the way for better treatments, and one day the cure. How can we not honor them?
Although my grief isn’t of a personal nature, I can’t help but react. Last week we were having all sorts of troubles with the magazine, troubles that ordinarily would have me plastered to the ceiling – and yet in the wake of this wake up call, no problem at work seemed really that important.
Every day since leaving NIH I’ve thought about my pulmonary function tests and how wonderful they were. But these two losses were a sobering reminder of just how lucky I am right now. They are a sobering reminder of just how much work we have left to do, and just how urgent it really is.
My grief reaction, having not known them personally, isn’t so much wailing and tears – it’s frustration. I’m frustrated that I have such an important task to work on every day, and yet it’s the thing I do at night, after work, when I’m tired and not always totally on top of my game. I’m frustrated that the most important thing in my life, working to help find the cure for HPS, constantly takes a back seat to mere financial survival. We need to do more and we need to do it now. It truly is a matter of life and death.
And to the two that have gone before us – salute. We honor you both and all that you did to help us in this journey.
Comments