a few decisions, finally

Yesterday was a day of overdue progress. We don’t have any more answers or even any reassurances, but together with our physicians, we are confident that we have done everything that can be done — and that it’s time to go home.

After two unplanned months in New York City, we are finally packing up and returning to our daughter and dog in a few days.

Sometime — several weeks, perhaps even months — after we get home, our last chance / best and only idea for treatment will arrive. Although we still aren’t certain of a precise diagnosis, we do know that it is a fast-acting, aggressive demyelinating disease like MS – so we’re going to try Copaxone.

Copaxone doesn’t always work even with traditional cases of MS. It may do nothing at all. If that is the case, there is a real possibility that Geoff could die from this. After already having had Chronic Lyme Disease for 30 years, I don’t know how much more his body can take. Then again, maybe Copaxone could help.

Knowing all this, we agree we would rather be home, together as a family, enjoying whatever we can, and hope for some kind of reprieve.

There were a few hours of terror yesterday. Even with Medicare, the copay for Copaxone is almost as much as our income. I wasn’t sure we would even have the chance to try this treatment. But it turns out that there is an organization that steps in for people in our situation — and gives a grant to cover the balance that Medicare doesn’t cover. There’s a group of philanthropists who simply take care of it, just because they can, just so people who need their medication can get it!

I am in awe.

These past several months have been truly horrifying, and we aren’t strangers to the difficult or absurd. But there have been other moments like this, where strangers or friends perform amazing acts of generosity, thoughtfulness and kindness. I am so humbled, and so grateful. I hope that I too may someday be able to help someone in this manner.

Meanwhile, I’m trying to pray through this dark night of the soul, through the confusion and terror and loneliness. I’m trying to not take out my anger on fear on others. Perhaps, for now, all I can do is be grateful.


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