Merry Christmas and all that

Sorry again for radio silence. It’s not like things haven’t been happening in VashtiLand, it’s just nothing really to do with ALS so much. It’s been normal. The new normal, not normal. Notmal. Born of a typo, I am adopting that word forever.

Last week I went to California to visit my mom for Christmas (surprise, mom!) and reconnected with an old friend, and got some awesome presents and made a fruitcake. That’s the TL:DR version.

First off, I want it clearly on the record that my little brother is out of his mind. Those that know him will not meet that statement with surprise. Nor is it the first time I’ve ever said those words, in that order. We drove down to Cali in a rental car, because it is much easier and cheaper to haul five people in a car than on a plane, especially when one of them is an infant and one of them is five. My little brother drives a tow truck on the night shift, he loves to drive – seriously loves it – and loves to drive at night, sepecially; he adores the quiet when there’s no one on the road. That’s not why he’s crazy. No. He is crazy because he did a full shift of towing, got off work at midnight, and then decided that NOW IS THE TIME THAT WE DRIVE TEN HOURS TO CALIFORNIA.

Out of his tiny little brain.

So despite concerns about driving tired and insisting that he was fine and promising on the souls of his children that he would pull over if he got tired, we piled into the car (literally; my poor sister in law was coccooned in the back seat with a toddler in his car seat, a baby in her baby seat, and blankets and pillows) and started the drive. We got fast food for the road, talked a little, and he drove, until we needed to pee or feed the baby or change the baby. With him complaining the whole time about this is why he likes to drive at night, you don’t have to stop for pee breaks when everyone’s just sleeping. It’s weird for me to sleep in the car – for ten years I was with a dude who needed a copilot to keep him awake when he drove long distances, like a NORMAL person, so road trips have always equaled THERE WILL BE NO SLEEPING. On this trip I was expected, encouraged to, and that was weird. It was nice though, I will always prefer traveling by car because it’s just SO MUCH LESS HASSLE. No security checks and long lines and fussing about where is the disabled entrance, just the occasionally dodgy public bathroom. And little brother annoyed that we have to stop, AGAIN, because it didn’t occur to his wife to breastfeed when we stopped for potty breaks.


We got to the hotel around noon, napped, got some In N’ Out for dinner, went out to see some friends, looked at lights, came back to the hotel, and settled down for a proper sleep. Which of course meant things had to go wrong. And by wrong, I mean someone hitting a transformer at 3:30AM and knocking out the power grid which triggers the hotel’s fire alarm. And by wrong, I mean the hotel’s emergency lights also do not work for some reason. None of which I knew, of course, just OH MY GOD EMERGENCY NO LIGHTS GET OUT GET OUT GET OUT!!! Cue me, woken out of a dead sleep in a strange hotel room with no clothes on, in complete darkness except for a flashing strobe light and an alarm so loud it is literally impossible to think. They put me in an accessible room (yay awesome hotel manager!), close to the exit, but first I had to get some clothes on, which meant stumbling around in complete darkness punctuated by blinding flashes with the most piercing, annoying screaming in my ears the whole time. I wound up outside barefoot in 34 degrees, in jeans and a backwards tank top, sweatshirt and boots in hand, hobbling through gravel to find a place to sit and put my boots and braces on by a blissfully near-full moon. I found the rest of my family, in the car keeping warm, and we sat in the parking lot, watching the pattern of flashing lights in the three story hotel (which were kinda cool looking from a safe, sane distance), my five year old nephew freaking out because he’s scared as hell and hates loud noises, my brother telling me how he went to check for me and didn’t know if I was still in the room and had fallen down or something so he was relieved that I was okay, and he is MUCH cleverer than I am, because he flipped the safety lock on his door so it didn’t shut all the way. Which meant that, unlike me, he could get back in to his room when the power came back because I’d left my wallet and phone and everything in the world in my room except pants, shirt, sweatshirt, boots, and cane. The fire department came and checked everything out, the power came back on while they were inside, we were all let inside when the firemen gave the all-clear, I had the poor night manager (freaking out because everyone was freaking out at HIM like it was his fault personally that this happened, on the phone with the alarm company because why didn’t the emergency lights come on seriously what the hell) let me back in to my room at around 4:15 or so, and got back to sleep at about 4:30.

Which is when the alarm went off again.

Just once, probably because the manager had finally gotten hold of the alarm people and they reset the system. But still. The punch line to all of this is that I’m doing a sleep study program at the moment, and it records audio while I sleep to see if I talk in my sleep, or what kinds of interruptions happen to disturb me (looking at YOU, Parmesan), so I have a recording of myself when the alarm went off. Turns out, when startled out of a dead sleep by a panic inducing noise and light show, I make a startled little “Oh!” sound like a cartoon.

And with that, it was Christmas Eve!

When I woke up after all that, I messaged my Squirrel Buddy Jim. You know, that buddy you have that you can just get together and squirrel around with. Mine is named Jim. I confess I was nervous about the meeting – I hadn’t seen him in person in too many years and I was/am completely self conscious about what the disease has done to me, how that affects people that haven’t seen me in awhile. Hi, last time you saw me I was 50 pounds lighter and didn’t need a cane and could step up on a curb just fine, how you doin? I guess I’m allergic to people feeling sorry for me? More like, it hurts me a lot when my condition hurts someone else. I get sad when I have to tell someone about it, because they get sad. And Jim has been a happy distraction in my life for almost 25 years and the last thing I want is to make him sad because I love him a lot. And he was not disturbed at all, outwardly, and was the perfect mix of casual ‘let me help you with this’ and ‘this is totally normal no big deal’ about it all, and I could cry, I’m so grateful. I should have expected as such from him, but I was still nervous, and I’m so happy I had no reason to be. We hung out like old times, we showed each other awesome things, I met his kids again, since they were wee and just born the last time I saw them, and we ate cookies he’d decorated and ate miracle fruit and tasted sour things and had a marvelous time as always. We talked from our hearts on the 45 minute drive back to my hotel (he lives in the middle of nowhere), and reconnected as always, and everything was normal and good.

And then Christmas was with my family so that was all just weird. Because family. I’m glad the aunts and uncle and cousins drove up to meet with us at my mom’s house, because I don’t know when I’ll get down there again. Traveling in general is getting harder, and soon I won’t be able to travel at all without special accommodations, which will make me less likely to travel at all. I told them all it’s their turn, now, to visit me.

And then we got up and out of the hotel on Saturday and my crazy brother drove us all home. And it was good to be home, and sleep all day Sunday except when blowing up Raiders in Fallout 4 or dodging Parmesan’s icicle feet because oh my GOD he would not leave me alone all day. And it snowed, just a little, and I slept through it, but that’s okay. It was a good Christmas.

I hope yours was grand.