'Hopeless hope'

Yesterday I got an email from the Friedreich’s Ataxia Research Alliance announcing positive results in a drug study and saying the drugmaker is going to submit the drug for approval. That would make it the first approved therapy for FA.

I spent much of last night trying to figure out how I felt.

To be clear, I wasn't offended by the idea of a treatment. The sooner we can eradicate FA is still too late for me. And MOXIe is not a cure by any stretch. It is supposed to slow the disease's progression.

And who knows if or when it gets approved? Or if it would be priced out of my reach? The positive results don't seem that earthshakingly awesome, either.

But ...

I have said that I could survive if I didn't get worse (I don't think I have made this claim recently as I have gotten worse).

I don't like being hopeful but how can I help it?

P.S.: Reynolds Price had the idea of hopeless hope.