Given that, you know I HAD to click on a link about Sir Patrick Stewart being awesome. He helped to surprise Dawn Garrigus, who has a serious degenerative disease, at DragonCon, with a personal meet-and-greet. Dawn has a problem with her mitochondria, which are nicknamed the powerhouses of the cell – as a biologist, my heart sinks reading just the name of the condition. I am so glad she got this chance, and the pictures make it look like the rest of her family join her in being huge Trek fans, like my family. My heart goes out to her, of course, but also to her sibs – of course.
…and yeah, it makes me wonder if I could ever ask the actor my sister only knows as Captain Picard to record a message for her, as “Data” and “Deanna” and “Wesley” all did. My dad now sometimes plays that recording for her (have I mentioned this? if I haven’t, oops! if I have, I’m doing it again!) on the phone. Through a creative use of speakerphones, I was part of one of these moments – I could *hear* that Lily was suddenly sitting totally still. When the message was over, she was just so happy. “Deanna called me on the telephone!” Thanks to the digital transfer we made of that file, we can make this happen again and again.
There are so many people who have been involved in the making of the Star Trek universe, and so many more who are fans in some way, that I know we can’t all be superb humans who never do anything weird or hurtful…but I think we do a great job trying to be the best we can be, among us.
Edited to add: This isn’t meant to be a passive-aggressive way of expressing that someone should pass this info along to anyone, for what it’s worth; I’m not actually ready to ask any other actors for help in crafting something for my sister. And, given that I already have done so? I can do it on my own. (If I were to make a passive-agressive – or direct – appeal to communicate anything? It would be just a “thank you.”)
You might take from this, however, that Make-a-Wish could be a charity to which you would donate…or not to tease a Trekkie in your life as much as you might otherwise. 😉
Something I wrote awhile back:
I just started my new job, in a new place. Most of my stuff is unpacked. Most of my stuff is still a total mess. This first week of teaching – because I’m teaching now – was exhausting. I pushed way too hard. But I learned a lot and am taking some time to recover and plan.
In the middle of all of what I’m going through, my sister continues to amuse and delight me.
The latest story that I wish I’d seen: Lily’s staffing still has some gaps, so they’re interviewing new people. Lily apparently couldn’t remember the name of the person they interviewed this week, and referred to the woman as “Bob” when talking to our mom or to the staffer who was on shift.
This made me laugh a lot, but it also pointed to an interesting thing: my sister may have realized that she didn’t have some knowledge, and filled it in somewhat arbitrarily in order to just get on with her life. She’s forgotten names before, but normally picks names of other people in her life. This is the first time I can remember her making up a name entirely. (I also have no idea where she got Bob; I don’t know that any of us knows people named Bob that we’d share with her!)
* * *
…and more recently:
Mom and I sometimes play Letterpress – sort of a single-word Boggle. Lily was listening in to our “trash talking” and conversation about what words to play while having a speakerphone conversation tonight. Mom had a first turn to take in a new game, and told Lily she could play either “zit” or “goat” (both are inside joke words that we play in the first two turns of the game, if possible). Mom played “goat,” I played “zits.”
Then Mom wanted to use another “z” on the board, and asked Lily for words that start with “z” – Lily correctly suggested “zebra.” This was no good, as there was no “r” on the board. Mom asked Lili, mostly in jest, for another word. (We haven’t really taught her another, besides zebra, but you know, you have to ask sometimes.) Lily clearly was busy thinking for a minute, and then suggested, “horse.”
Seems we have a few more things to teach her about phonics! But it was funny. 🙂 And it makes me laugh at the memory of my doomed Scrabble game with Mom some years ago, home from school on vacation, and we were trying to keep Lily occupied by playing catch with beanbags. (Lily had the habit of snatching Scrabble tiles.) At one point, Lily got exuberant – not sure if she was bored, since I obviously wasn’t paying attention – and launched a beanbag that slid right across the middle of the board, and wiping all of our words away.