Wednesday, September 03, 2014

The fish and the loaves

A few weeks ago I was talking to a friend of mine. I was expressing my anxiety about all of the things ahead for the HPS Network, all of the doors opening up for us, but the need to have the funds to walk through those doors. While I can work on promoting funding the HPS Network generally, right now raising money for my medical needs is taking priority on a personal level. How do we help the HPS community understand what it takes to make these things happen?

It’s a bigger challenge than you might think. Sometimes there is so much going on that it’s hard to take time to keep everyone in the loop, let alone help them really understand what it took to make things happen. We’d always rather be doing instead of telling everyone what we’ve done, yet if we don’t get better at explaining the process, how can we expect everyone to understand what it takes to keep the journey to the cure moving forward?

Research doesn’t just happen by magic. It takes money to not only fund the actual research, but the infrastructure to make that research possible.

My friend told me about a homily her priest had given that Sunday about the fish and the loaves of bread to feed the thousands.

I think we’re pretty good about making our money stretch and stretch and stretch. We have accomplished a lot with far fewer resources than it should have taken to come this far. It could be scary, or reassuring (depending on your outlook) to know how much of the quest for the cure for HPS happens on acts of faith. We commit on faith that we will be able to rise to the occasion when the time comes. Somehow, it always works out.

As I thought about the fish and the loaves, however, I couldn’t help but think even Jesus had a few fish and loaves to start with to feed the thousands. The more I thought about it, the more it occurred to me that, perhaps with the exception of creating the world, even God needs some buy in to make miracles happen. He needs some loaves and fish to start with, or some water to turn into wine or some faith to raise the dead.

If even God needs that, then how can we ever expect to find a treatment, and one day a cure, for HPS without making an investment in the process? Lord knows the HPS Network doesn’t have the powers of God!

If we, as people touched by HPS, can’t invest in our future, how then can we expect the greater world to just take care of it? It just doesn’t work that way.

For now, I’m trying to have faith that more of us will take on funding the cure however we can. I don’t like praying to God as though he is some sort of wish-granting genie, but I am praying for guidance and wisdom for our community to help us reach the challenges ahead of us.

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