I don’t say this nearly enough. I am grateful. SO SO SO (imagine about a hundred more SOs here) GRATEFUL for the people in my life that have stepped up to show their love, to see how they could help, to not bother asking how but just doing something.
I’m going to New Orleans this month, for a week, on Megan’s dime. Because she loves me and wants to travel with me and I love that city. We’re going to eat ALL the things. I’m going to Disney World next year, which Danielle and I had been planning for our 40th birthday celebration for awhile, but Danielle has just taken the reins of this thing, asked me what I wanted to do, and planned everything out. She’s even fundraising so that I don’t have to pay for all of it. My dear friend Melody came to visit for a week, all the way from New Hampshire. Just to spend time with me. The lovely Linnea, my first best friend/partner in crime, is coming this weekend.
Dying makes you pretty popular, it seems.
And I always thought of myself as not that special, I mean – sure, nice person, okay, but extraordinary? Hardly. And here are all these people taking me places and coming from far to spend time with me, telling me without words that I AM kind of awesome, shut up.
It’s amazing, and overwhelming, and yeah. I’ve probably said it all a hundred times, and I’ll say it a hundred more. I love everyone in my life. I love the people who have made an effort to visit, I love the people who couldn’t quite get it together to do so, but wanted to. I love the people taking me to real places, I love the people who have gone to imaginary places with me.
This isn’t an easy journey for you guys. I know damned well. It’s easier to ignore me and hope I’ll quietly go away (SPOILER: I am going, but sure as SHIT not quietly). It’s hard to have the conversations with me, it’s hard to hear the jokes. It’s hard to know someone who is dying, and not let that depress the shit out of you or chase you away. Some of you will drop off the line when things get really horrible, and that’s okay. I’m grateful you are staying for as long as you can. Because I know that it’s hard. It’s one thing to say, “I have a friend dying of ALS” in conversation, and it’s another to admit to yourself in the small hours of the night that someone you know is going away and there’s nothing you can do about it.
You’re so incredibly strong for dealing with this. For doling out what kindnesses you can. I did not expect you to, and I’m grateful you stayed. You’re amazing people. Each one of you.
So thank you. For being a point of light, for being a celestial body in my universe. The cosmos is infinitely brighter with you in it.
It’s life affirming knowing you, Vashti. I always wanted to more before, always thought you were special and amazing and am grateful to have this chance. Losing you to ALS is very sad, but it’s only sad because knowing you is such a privilege.