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!|
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: http://www.cbsnews.com/news/new-als-drug-approved-for-lou-gehrigs-disease-radicava/
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.