Looking into the dark

Im staring into a dark abyss as my husband and I head into tomorrow, and I am nervous. I’d even go so far to say scared. The husband starts a trial drug (Zilucoplan) for ALS and the number one thing I don’t want to do is get my hopes up. Which is ridiculous to even say because we all know I will. Even I am well aware of that. It’s just part of human nature. We hope.

It’s been almost a year that my husband and I received the diagnosis that he has ALS. And here we are on the precipice of something that could help slow the progression. That is, of course, if he gets the actual drug. Neither the doctors, nor we, will know. Probably not even for some time after the preliminary 6 month trial. There is a chance that he could get the placebo. And this disease is not one to “wait.” So, I’m hoping beyond all hope that gets the drug. (See, impossible not to.)

The odds are good (75%), but our luck hasn’t been the best these last two years. Which is why I hesitate to let myself have even an inkling of optimism. I don’t want to be wrong. The hurt would be even worse to have this expectation for positive results, but in the end to not have them at all. It would almost be better to never try it to begin with. However my husband wants his struggle to mean something. And regardless of him receiving the true drug or the placebo will still greatly contribute to the cause. It will help make someone else’s future life better.

All opportunities worth doing in life are scary. These actions are filled with infinite unknown variables. Which is why we do them, why we take these risks. We want to see what comes to us out of the dark. We just hope they’re shimmering in our favor.

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