Thursday, May 11, 2017

Erin's Day for ALS Awareness

Four months today. You're everywhere. In the eyes of your kids, in the hearts of your family and friends, and certainly in the eyes of your granddaughter. I wish I were an old hag writing this at the end of my life about a friend who'd already lived a long and full life. Instead, I'll be celebrating my next milestone birthday without your physical presence. And the one after that.

You were supposed to be one of my bridesmaids, if I ever got married. I might have been your maid of honor, had you made it until summer well enough to marry the man you loved. Since your diagnosis, we were all prepared to band together and take one more road trip - your last ride, as it were. You were all for it, but looking back I think you knew it wouldn't happen. I would have wanted to know what you knew but still... thank you for sparing me. I know why you kept so tight-lipped about the severity of the situation.

I said I'd honor your memory, and I meant it - I've been thinking about this blog post for days now.
Erin, in one of her hand-knitted sweaters. So truly talented!
How can I continue to bring to light the awful nature of the bastard disorder that took you from me, from us all? I struggled to figure out where I'd go with this one, as I usually do when I sit down to write. Then I read an article through a link posted by a wonderful guy who has been fighting ALS successfully for quite sometime. A new drug was approved for treatment - the first in twenty years, it said. Then I thought back to the links we sent each other when we were waiting for the goddamn doctors to diagnose you -- I thought for sure it was a trial we had discussed. Whether it was or wasn't doesn't matter. What matters is a new drug was approved. This is incredible news for those who are here, and I know that. But again, I was seized by a selfish human moment.

Filled with anger and sadness, I cried all the way home. I stayed the fuck off Facebook, because I couldn't deal with anything else. In the moment, it wasn't fair. Had the drug been approved sooner (because who knows how long it took -- what was it you'd said? They're quick to stuff us with man-made preservatives and additives that'll rot us from the inside out, but they can't see their way to give us a cure for anything.), would you have made it? Would we have gotten to keep you for weeks more? Months more? Years more?

I'm having a real problem, even now, understanding the ways of the world and why things happen the way they do. I struggle to stay present, to push forward. I miss you. Our crew - the Snack Pack? - isn't balanced without you in this world. We feel you and we feel your absence at the same time. It's surreal. And just when I think I can't cry anymore, the tears come. And yet, because I know it's what you'd want, I will keep fighting the good fight.

The Link:

A new drug, Radicava, became the first drug in 20+ years to be approved for the treatment of ALS. I feel like, despite the victory, we should all be concerned that this amazing new treatment will cost $145,524 a year, according to the manufacturer. I wonder if such an organization exists that helps those suffering with funds to cover the cost of treatment, or at least to aid in paying household bills. It's not a cure, but an effective treatment used to prolong the lives of those fighting.

Readers: A new treatment is great, but there is still no cure. If you are so inclined, please donate to the ALS Foundation to help further research. Visit ALS.ORG for more information.

I love you, Ren. 1977-2017

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