Celebratory

In two days, I will be completely surrounded by my loved ones.

In what my favorite (non-related to me, ahem) child Emi has dubbed my “Awake Wake”, people from literally across the United States are gathering for a celebration. For me. I am throwing what I hope to be a grand party, to see all of my oldest and dearest friends and my newer beloveds, before this disease takes my ability to speak, to embrace them. To throw one grand shindig and see everyone I love. A funeral in which the deceased has not quite shuffled off this mortal coil.

I blatantly stole the idea from my friends Chad and Dawni. You should blatantly steal this idea too.

In four days, I turn 42.

Each birthday is precious, regardless of your circumstances. Each of mine is especially dear to me, because I don’t know how many more I’m going to be able to celebrate by eating delicious food with friends. Sushi becomes less special when the only way you can ingest it is through a tube, you know? Each day matters. I’ve been laid up with a mild to moderate ligament tear/sprain, and I feel the loss of each mobility day more keenly than I otherwise would. My days on my feet are already limited, and I feel them slipping away. Worst timing ever; my friends are already arriving, and I want to see them as much as possible, I want to show them around this amazing city I live in, want to tell them absolutely everything I never had the nerve to, before. I’ll be celebrating my birthday by going to Clinic, but hopefully that evening we’ll do something fun and delicious.

I’m excited to see everyone. Nervous, because for some of them it’s been just about 20 years. I’m the fattest I’ve ever been; under doctor’s orders, but still my vanity aches a little that after all this time, they’re seeing me like THIS. But it’s important to me that they see me like THIS, and not an emaciated meatbot, unable to do anything but meet their eyes and drool as they talk to me. For now, I can still exchange horrible jokes, still hug like a bear, still tell my friends how much I love them, how each of them shaped who I am. How I am so much better for knowing every single one of them.

Because I am, without doubt, better for knowing every. Single. One.

My life has been stupid charmed by the amount of amazing people in it. And I am grateful than when I said, I’m throwing a party – please come? They are coming. From far and wide. To say hello and goodbye and I love you and maybe play with some stickers and eat some cupcakes. Crying will come later, but for now there are memories to exchange and stories to tell and so much laughter.

I can’t wait.

Bruising for a Cruising

Okay, I have to tell you about this stupid thing that happened, because then I can focus on the good parts, and also tell you something good that came of it all.

TL;DR: ALS RUINS EVERYTHING EXCEPT MAYBE DRAMATIC ENTRANCES.

So, I went on a cruise. I’d arbitrarily decided I wanted to do that, last year, as a bucket list thing. Cruises seemed cool, and at the time I was envisioning myself spending a week on the ocean, cruising to Alaska, taking the time to mentally collect myself and write all of my goodbye letters and look at the water. My friend Beth has been trying to get me to go on this one geeky cruise, but it was in Mexico and I’m not a tropical person. At all. And then, well, my hands stopped working so well, so it was less important that I have all the alone time, and then the geek cruise announced that Zoe Keating was going to be one of the performers and suddenly I am going on that fucking cruise, you’d better believe it.

It’s this one: https://jococruise.com/

One week of music and comedy and geekery. Puce, Lance, and Tam came with me, and we were gonna have a hell of a time and I was going to work up the nerve to say hello and thank you to Zoe Keating, and I was going to look at the water for hours and maybe have a cocktail and perhaps see a whale. And I did all those things and so so so many more. It was incredible.

…Except for this one thing.

From the start, I had concerns about accessibility. I can’t do without the walker, these days. I use a cane to get from the car to the grocery store where I can use a cart to lean on, or I’m using my walker. I wasn’t terribly concerned about the ship itself, though, I mean, these things are practically built for old people, right? I had a quick look at the cabin floor plan and realized with one week to go until the cruise that the bathroom was not even a little bit accessible. I sent a very apologetic and frantic email to the amazing planner people, who totally came through and switched me to an accessible cabin with grab bars and everything and it was all saved and glorious! (HOORAY FOR THO) ..Except for the shore excursions, I was still wary of them. Now, I realize fully well that the A in ADA is for Americans, and the rest of the world is not exactly accessible, which is why I’ve become reluctant to do a lot of traveling. But I completely intended to make do, so long as they could get me to shore, which they promised they could. And I tentatively believed them and didn’t worry about it at all until the day before the first one.

We were going to stop for the most of a day in Cabo. Unfortunately, there was a thing on the ship I wanted to do, right in the middle of the day, so we stopped by the front desk to ask how the disembarking would go down, to see if the hassle was going to be worth it for just a couple of hours. The town was too small to dock in, so they were offloading people by tender, which is a small boat, the woman with a delightful German accent explained. There wasn’t a rail, and there was a small gap between the ship and the tender that would wobble with the waves. Due to liability issues, they could not carry me in, but there were people on both sides to give me a hand. She assured me it would probably be fine. I had my doubts.

We skipped Cabo, and the event I wanted to go to was postponed til Friday, so I wound up spending the whole day on the ship, drinking fake mojitos and staring at the water and having a nap. SO HORRIBLE, YOU GUYS, SUCH MISERY WOW. CRUISES ARE THE WORST. The next day was Loreto, though, and not only a local food festival but an all night concert (Ted Leo will indeed rock your face off, so there was no way I was missing that). I vowed to get my ass ashore and do some sightseeing come Hell or high water – and yes the irony of that is not at all lost on me. The morning came, and so did my apprehension. Again, too small to dock so we were using tenders to get ashore. Lance went to the launch site to see how hard it would be to get me on the boat, and he assured me that it was a little gap, the water was calm, easy-peasy. They’d be there the whole time to help, and I knew they absolutely would. It wound up truly not being that difficult, even though I can’t step up a curb anymore, just a little gap and a lot of helping hands. HOORAY FOR THAT.

The ride to the port was nausea inducing, and the dock we wound up in was basically a narrow-ass pier maybe five feet wide, and then a steep as shit ramp to get up to the port. We had to step down from the tender using two wooden boxes made into stairs and yeah, you THINK you already know where this is going, but NO. I made it down the steps just fine with a lot of help from the crew and my friends, and walked across the narrow pier with no problems, and up the steep ramp without falling. You doubters. We made it to the city and looked around; it took forever for me because hey! No proper sidewalks and steep hills and cobblestone streets! Lance and Tam split off from Puce and I to do some shopping, while we looked at an ancient mission church and its museum of artifacts.

And then shit went sideways…literally. Without going into detail, I fell out of the walker and skinned the bejeesus out of my knees. As usual, the worst part was the strangers. It was right in the middle of the road, in front of a restaurant, so everybody and their mother pretended not to be watching but still managed to stare as we tried to get me up. A well meaning couple helped Puce out, and then overstayed their thanks by over-analyzing why I fell and how to prevent it from ever happening again while Puce and I both repeated YES THANK YOU and tried to move the fuck on with our lives. We limped to an ice cream shop, where I ate delicious ice cream from my childhood while trying to forget that it happened. Remarkably, my tights weren’t ruined, it turned out. Hooray! The day was not completely obliterated, but we agreed it should probably be a short day.

We did the food festival, delicious! and then stayed for the first act when the concert started. We decided to head back to the ship while there was still light to see. I was pretty wiped out by this point, but luckily there were taxis provided by the cruise organizers to get me back to the pier. And….again, I know what ADA stands for, but the van that showed up had a wheelchair symbol on it and yet was the most un-accessible van ever. He helpfully provided a little stepstool for me to get up into the seat with…which was a complete waste of effort because I don’t have the strength to lift my foot up that high to get ON the stool, much less step up with it into the the van. I managed, but it was not pretty and my tights were falling off by the time I was onboard. I discreetly hitched them back up when we got to the dock, I walked so, so carefully down that steep-ass ramp, navigated the narrow pier to the boat…

..and swore a lot because I’d completely forgotten about the fucking steps up to the boat.

Now, I can do a couple of steps if there is a sold handrail, because it’s basically using my arms to haul myself up. Without a hand rail, though, it’s fucking impossible. I quailed, but Puce assured me we would get this done. The diminutive crew took my walker on board, and then I slung my arm over Puce’s shoulder to try the steps. It failed instantly, and completely. I couldn’t help him get me up at all; I couldn’t lift my foot even, on to the first step. The crew tried to help, but they were small Asiatic men trying to assist a fat American giantess, and they were completely ineffective beside grabbing me under my arms and trying to put my feet on the stairs as though the only problem was getting my foot to touch the step. I asked to be allowed to sit for a moment, to catch my breath and rethink the problem. It took them all too much time to understand, this isn’t working, let me go.

I looked around, trying to think of a plan, and not allow myself to become a quivering, humiliated mass of tears. I noticed a line of people behind us and tried not to look at their faces. I noticed a cute girl with pink hair watching, similarly trying to think how to help. And then I noticed Anne Wheaton, one of the cruise’s celebrity guests. You probably would know her best as Wil Wheaton(the kid from Star Trek)’s wife, but she’s a geek in her own right and a fellow believer in the amazing power of googly eyes (for real though, google VandalEyes; the woman is one of my heroes) and was on the cruise doing a reading from her upcoming book. And she was watching me struggle with these ghetto-ass stairs on this unstable-ass boat and these little dudes hurting me while trying to help and I really, truly, just wanted to slip into the water and never come up. But that wasn’t an option.

I had just decided that the easiest thing would be to haul myself on to the boat and crawl over to the bench on my skinned knees like a fucking animal because surely my dignity could only suffer more if I managed to piss myself as well. That’s when the pink haired woman stood up and offered to help, assuring me that she was quite strong. I waved her off once, announcing that it was probably easier if I just crawled, but she repeated her claim of strength and voluntold another man to help her and Puce pick me up. I accepted with as much grace as I could pretend to have. Carrying 230 pounds of dead weight up what are effectively rickety fruit crates and on to a narrow moving boat is not an easy task. I think 8 people at one time were helping me, swiveling me successfully into a bench, and I tried to crawl inside my own skin as everyone else filed on board. Puce was amazingly supportive as always, and silently offered support while we rode back to the ship as I silently prayed for everyone to please forget this whole thing, and did my best to not completely lose my shit until I was alone. The pink haired cutie stayed behind to make sure I was able to get off the tender okay, and of course I could as there were no stairs involved. I thanked her a dozen times, we got back to our cabin, and I cried a lot.

I spent the rest of the cruise fervently pretending that the whole thing hadn’t happened. I had bruises under both my arms, my ego was shattered, but goddammit I had a good time for the rest of the trip pretending I hadn’t made a complete spectacle of myself in front of a boat full of strangers and Anne Wheaton. I mentally chalked it up as a lame-ass claim to fame and joked internally that she’d probably never forget the trip, for damn sure. And managed to forget it, mostly, specially when I got home. I knew I’d probably blog about it, but hopefully in a not-depressing way and try to find some positive angle on the whole ordeal, cause that’s how I fucking roll.

I’m off work for sabbatical now, so I slept late Monday. When I woke up, Puce asked me if I’d been on Facebook yet. That’s…never a good sign. I told him no, mentally wondering who died. He said I should check, and I got nervous and asked what was up. He asked if I wanted to find out myself, or should he tell me, and I didn’t feel like sorting through a time bomb of a timeline, and maybe Facebook’s stupid algorithms wouldn’t even decide to show me what he was talking about at all, anyway. I told him to tell me.

“So…………Will Wheaton’s wife posted to the JoCo Sea Monkey 2017 group about your…incident. It’s very nice, and sweet, and depressing…but she still posted about it, basically to give you support.”

FFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUCCCCCCCCCCCCCCK.

“Then Beth went and tagged you in comments.”

FFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU

OK. Breathe. It’s cool. No big deal. It’s cool. Public humiliation part two. OH MY GOD THIS IS NEVER GOING TO GO AWAY IS IT. I braced myself for the worst and checked the group. And the post was obvious.

“To the young Sea Monkey who was using a walker on the cruise-”

Wincing, I read her account of the incident, mortified that my emotions were so transparent and I was completely casting a shadow on what should have been an awesome night. I hate that my disease is depressing as hell to everyone around me. I try to keep my shit in check for this reason alone. “What I wanted to do was get up and come over to you to tell you not to feel stupid for your body failing you, but it’s not my place to tell you how to feel,” she wrote.

..Holy fuck, this woman gets it, I thought in surprise. Being told not to feel dumb or weak or sad is never helpful. It makes me angry, if anything. And she understood, and elected not to intrude on my struggle like some Feel Good Fairy Godmother with useless words of non-comfort. I wanted to hug her for that. She continued to tell me that she noticed that not one person behind us waiting to get on the boat was irritated or impatient, just standing by not knowing how to help. And..I was relieved. And instantly didn’t mind at all that she posted this story semi-publicly. Was grateful, even. Because of course my brain told me that everyone was watching, feeling sorry or being mad that I was Officially Ruining Everything. She understood how I felt enough to make a point to tell me this. Which was amazing. She gracefully relieved me of any obligation to respond or identify myself, and concluded:

“Just remember, you are not your body. You are an incredible human being facing a really shitty situation who chose to go on a cruise and live life to the fullest. You are an example of perseverance we should all be so lucky to witness.”

I’m…not entirely sure that’s so, of course. I’m just some dumb girl with a fucking ridiculous disease that ruins everything. I didn’t really decide to go despite my disease. Zoe was gonna be there and thus, so was I. The end. But Anne’s words were amazing and timely as shit and I felt immediately better about the whole thing, and I replied with a simple thanks on the post but sent her a more detailed reply in a Facebook message, including a request to pass my thanks to her pink-haired rescue goddess friend who was indeed super strong. She told me why it hit her so hard, and hoped I’d be back next year. I told her I’d like that, but maybe I’d skip the port of call next time (heh), and asked if I could use her words when I inevitably posted about this whole thing. She said okay and she’d be sure to pass on my regards.

And now I have. So, a super shitty thing happened, but as usual, there was a moment of grace in it that gives the incident some worth. I’m only sorry I didn’t get to hear this from her in person so I could hug her. And then show her the googly eyes on my JoCo badge.

Sometimes It Goes Right.

I want to tell you a happy story, but it involves a little bit of angst, but first there is a happy thing, and it has a happy ending, okay?

OK. I thiiiiiink I’ve told you about this before, but shortly after I was diagnosed, my friend Nate gifted me with a subscription to Loot Crate. It’s a monthly subscription box full of geeky fun things, and it’s a delight to receive every month. I ADORE surprises in the mail, and it’s been a bright spot once a month, and Nate is an amazing person for doing this for me. I always love seeing what awesome things they’ve come up with. Sometimes it comes with a shirt, I once got a glow in the dark Tron pencil case (cough cough makeup bag), a plushie facehugger from Alien, a kickass bank in the shape of Hellboy’s fist, the list goes on.

There’s a point to this beside Nathan is OSSEM and I love geek things, I swear.

I was so enamored of the stuff, that when Loot Crate upped their game and offered a wearables-only subscription, I was all over it. A shirt and TWO! TWO PAIRS! of socks every month (OH MY GOD I LOVE SOME SOCKS YOU GUYS) (no really you have no idea) (seriously two drawers overflowing) and it was a done freaking deal. This month I got a pair of Nightmare Before Christmas socks (squee!), a pair of Walkign Dead socks with weapons screenprinted all over them (hee hee hee) and a baseball jersey style shirt emblazoned with the logo for Weland Yutani, the company from the Alien movies. It’s RAD.

I went to see Dylan Moran on Sunday – he’s an Irish comedian who’s been in a lot of things I love (Shaun of the Dead, Black Books), and I decided to wear the jersey. And here is where things get sad. Apparently I was having a really low mana day, I don’t know why, but when I let go of the walker to climb in to the car, I fell. Not a dramatic OHMYGODWEAREGOINGDOWN but just a ‘welp, gravity is a true theory and we all must obey’ kind of slide to the ground. The corner of the car door caught me under my arm and I grasped at it to avoid going down hard, and I heard this awful rip. It was almost comical for a minute; I knew I had to let go of the door, because I couldn’t recover from the fall, but I could hear the ripping get worse and I was inwardly cringing.

Puce was a freaking champion of champions, he was by my side in a flash and had lifted me to my feet before I quite knew what was happening. He hugged me tight and said it was okay, we were still going to go out and have the BEST NIGHT EVER, and helped me back into my apartment so I could change my shirt. I hadn’t even had the effing thing on for an HOUR. I did a pretty good job of not losing my shit. He said maybe Loot Crate would replace it. I said I hoped, but didn’t think so, because it’s not like it’s Loot Crate’s fault I have ALS and fell and ripped my shirt.

I sent them an email that night anyway. Maybe I could buy a new one? They sometimes sell their crates, later, but even though I didn’t need a whole new set, maybe they had a spare shirt I could pay for. It was worth a shot. I sent them this email and photo:

SUBJECT: A Tale of Woe-land Yutani

TL:DR at the bottom. <3 Ok so I had tickets tonight to see Dylan Moran (he's awesome, go see his show if you can), and busted out my brand new Weyland Yutani shirt for its inaugural outing. I headed out to the car, and..well ok, I have ALS (Lou Gehrig's Disease) and my legs don't work well anymore, and as I was getting in to the vehicle they said EFF YOU and I fell. I flailed around for something to catch myself on, and instead the car door caught the shirt as I went down and it ripped. Really badly. Luckily it kiiiinda slowed my fall so I wasn't hurt, yay~! But my brand new jersey I hadn't even had on for an HOUR is now ruined. TL:DR; is there a way I can buy a replacement JUST for the shirt and not have to hope you guys sell this crate later? Even if you can't, thanks for being awesome. -Vashti

let 'er rrrrrrrrrrrrrrrrrrrrrrrrrrrip

The next day I got a reply:

Hi Vashti!

I’m sorry to hear of your woes! As a one-time courtesy for being a loyal Looter and providing a photo of not only the torn shirt but including your kitty as well, I will get a replacement out to you. Due to inventory changes at our warehouse, we ask that you allow up to 10 days for your replacement to ship. Once it has been processed, you will receive an email with new tracking information.

We would like to apologize again for the late delivery of this item. Thank you for your patience and understanding!
Thanks!

Keith ^_^ – Team Marvel
Loot Crate Help Center – https://lootcrate.zendesk.com/hc/en-us

LOOT CRATE IS AMAZING. Keith is amazing. I am not sure what Team Marvel is, but it would not surprise me if the Loot Crate offices are divided West-Side-Story-Style into Team Marvel and Team DC and instead of fighting in alleys they play with action figures and make “pchew pchew pchew” noises at each other over their cube walls (“Cyclops got you with his eye beam!” “NUH-UH, Wonder Woman deflects it with her bracers!” “Her bracers would not be able to deflect his eye beams unless they were made of ruby quartz!” “SHUT UP NO ONE EVEN LIKES CYCLOPS HE IS LAME.” “YOUR MOM is lame!” “Craig do we have to go to HR again?” “….No. But Batman would kick Cyclops’ ass any day. He is like the Aquaman of the X-Men.” “GODDAMMIT CRAIG THAT IS IT.”), and have heated arguments in IRC over who is better, Deadpool or Lobo.

……I digress. But! Thanks to Keith, and apparently to Parmesan being a butt and refusing to let me take a picture without him walking all over everything IN THE WORLD, I have a new shirt coming. SO that is excellent. ALS can’t ruin everything when there are awesome people in the world like Nathan and Keith. My world is an awesome place with fabulous people in it.

…Deadpool would totally kick Lobo’s ass, btw. This is a fact.

Quick – What’s the Best Thing You Ever Bought?

That snazzy awesome dream car you always wanted?

The engagement ring for the girl of your dreams? (She said yes!)

Little Timmy’s life-saving surgery?

WRONG.

It’s this.

NEW BED OMG

Not the bedding, obvs, I paid for that. THE BED. THIS IS MY NEW BED GUYS. You press buttons and it quietly goes “click” “vrrrr” and then it MOVES. I don’t have to make a nest out of pillows and blankets to sit up! It just DOES THIS THING. And then you lie in it and then it’s like the comfiest quicksand where you just kinda siiiiiiiiiiiink in and ahhhhhhhh.

And I can GET UP OUT OF THE THING.

FURTHERMORE, and most importantly, it is IANTO-APPROVED ™.

I suppose you want the deets (that is Street Talk for ‘details’ because I am hip and cool with the electric youths), wellllllll it is a Tempur-pedic Premier base (the part that goes clickvrr) and a Serta Prodigy Everfeel Plush Firm mattress (the part that goes siiiiiiiiink-ahhhhhhh). You guys saved a bundle on it from my Mad Hookups with Jen at Sleep Train (the kids still say Mad Hookups right? Or does that refer to the sexxings now? I get confused, slang changes so fast) and it is SURELY THE BEST THING YOU EVER BOUGHT.

For real yo.

Thank you. So very very very much.

It’s a little too high to sit on and get dressed, which was easily remedied by putting my old desk chair next to the bed which ALSO serves for allowing my geriatric cat to get up. Parked next to my milkcrate night stand, yeah it looks a little ghetto but I SWEAR I am getting some real furniture for there now that I know how tall the bed is. I spent all day in it yesterday, literally, except for going out to dinner with J while some kid outside the restaurant got arrested for public intoxication while his winner friends continued to drink and pretend not to know him. But other than that I was in that marvelous bed, working from home, cuddling with cats. The botox injections for the headaches are REALLY not working out, so I’ve had nasty headaches which are not allowing me to fully appreciate the massagey functions yet, but FULL REPORTS ON THAT WHEN THAT IS REMEDIED.

OK.

Thanks for the peaceful space to sleep, my ninjas. You’re awesome. Even more awesome than the bed IF THAT IS EVEN POSSIBLE.

Ianto Approved (tm)

Resting Easy

It’s really hard to get out of bed.

To be sure, this has ALWAYS been true. I like sleep, more than I like anything else. I find it hard to convince myself to get out of bed even to do things I like to do, because bed is comfy and warm and there are cats there. Bed understands me.

But what I ACTUALLY mean is that it is now physically hard to get my ass out of bed. No leg strength to push out of bed with, nothing to grab on to and pull myself out, a 22 year old cat that absolutely INSISTS that he needs to be on me, on my chest specifically, pinning me down, and all this equals me flailing in the morning like a turned-over turtle to get myself upright. It’s not dignified, or pretty. Probably hilarious though, for the first couple of minutes until you realize why it’s hard and then you get sad and hate yourself a little for laughing at me, you unfeeling jerks. Erm. Sidetracked. I mean, getting out of bed is becoming a herculean physical challenge, when I already emotionally and mentally don’t wanna.

And this, my dear, wonderful people, is where you came in.

My main babe Danielle had set up a Crowdrise account for me. You might remember that; it’s over there on the right. It was set up to collect funds against helping me with affording things related to my disability and bucket list. And now the money, money that YOU have so amazingly, kindly donated, money that Danielle worked very hard to raise on my behalf, has gone to buy me the most amazing bed ever. One of those awesome Old People lifty-adjustey-even-has-a-massage-function beds. To top it all off, my friend Jenn happens to be a sales manager at Sleep Train and got me this amazing, jaw droppingly good deal on the whole thing. I don’t know how much this normally costs, but I know I’ve got this bed for a STEAL. It’s going to help me SO MUCH. And when getting out of bed on my own is no longer an option, it’s going to be a VERY nice place to hang out with my cats.

They deliver it Monday. I’m beyond excited.

And I am so, so, so grateful to all of you for making this possible for me. This is going to be such a great help. And every night, when I lower the head of the bed to sleep and turn on the massagey function, I will think of all of the people who loved me enough to make it happen, and I will dream the sweetest, most grateful dreams.

Thank you.

Moved

Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.

Controversy and Community

I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.

Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.

So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.

One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.

I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.

*stepping off the soap box*

Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.

Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.

I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.

So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.

A is for Awareness

May is ALS Awareness Month.

Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.

It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.

This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.

I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.

I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.

I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.

I’m aware of how cheesy that sounds.

Don’t care.

Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.

Thank you all for being a part of it. I love you. I hope you’re aware of that.

Assisting the Assistance

One of the most common questions I get asked is some variant of “what can I do for you?” or “how can I help?” or “what do you need?” It’s a common response to finding out someone is in distress, when the situation is too large to process at once. It’s a natural instinct, to want to exert some kind of control over a situation that makes you powerless. Okay, it sucks that you have a terminal disease, what tiny little piece can I work at to make it suck a little less? There must be SOMETHING. Anything.

You know the absolute best thing you can do, for anyone going through A Big Deal?

Take care of their caregiver.

The Big Deal sucks for the person who is center circle, no question. But it ALSO sucks for the people around them – as Dr. Doug McClure told me, “You’ll find it’s not that YOU have been diagnosed, WE have been diagnosed.” The caregiver is responsible for keeping everything together when the diagnosed no longer can. They do everything from making/getting to doctor visits to cleaning house to coordinating visits to making sure they’re wearing clean socks. Lifting spirits and lifting patients. Finding hope and finding the damn car keys.

Dying sucks, and there’s a lot of planning and work and Massive Introspective Soul Searching ™ involved, but comparatively? My job is easy. I just gotta die. Whether I work at it or not, the end for me is the same. I just have to let it happen. Danielle, though, she has to plan and prep and care and organize and clean and all the things I can’t, from here on out. It’s a really big deal in its own right. Later on in our joyful journey of doom, if I just let things happen without working at it, I’m pretty much where I was either way. If she lets things happen without working at it? I won’t eat. She worries about keeping my house clean, making sure I’m not expending too much energy, researches places to live, and is pretty much an unpaid personal assistant.

…The woman cleaned up cat poop this weekend to spare me having to spend a spoon to do so. CAT POOP. THAT IS LOVE, PEOPLE. She’s signed on to scoop cat boxes for NOT EVEN HER CAT.

It’s a tough job but it doesn’t have to be thankless. I’ve done thankless jobs, and they’re soul-draining. I’ve done really shitty jobs happily, because I was appreciated for it. It’s amazing how far a thank you goes. An honest, sincere word of thanks. A “hey, I know this thing took up all your weekends for a month and I’m sorry I can’t pay you for it, but let me take you to lunch at least”. Taking a second out of your life to say “I appreciate the hell out of what you’re doing.”

I’ve said it before: it is fucking AMAZING how helpful it is, to simply have someone just acknowledge what you’re doing is hard.

So if you want to do something for me? Do something for Danielle. Buy her a freakin’ Jamba Juice or something. Ask her how you can help share her burden. She needs people to care for her. Someone to give her a break sometimes. And mostly? People to recognize that what she is doing is HARD. She is shifting her entire life to be there for me. People need to appreciate and acknowledge that sacrifice. I appreciate the ever loving SHIT out of her, and it will be extremely helpful to me if others do, too.

Thank the Good LORD for great friends.

Not even an hour after I posted that last entry, and sat here, feeling very small and afraid and helpless, my little brother Eric sent me this:

bahahaha

And I went from crying with grief to crying in laughter.

And that’s how I know I have the best planets in my orbit.

Anniversary

There’s a book called “Miss Peregrine’s Home for Peculiar Children”, which I love, and in the epilogue, it brilliantly describes how anything that changes you forever splits your life into two halves: Before and After.

Before, like anyone else, I had a lot of plans. I just bought a house. I had all the paint, and all the decorating ideas, and SUCH a garden planned in my head. My backyard is luxurious and I had many garden barbecue parties planned already. I had a spare room just for fostering kittens. My kitchen was a thing of beauty, I was planning amazing culinary ventures. This was going to be my forever home.

Before, my health was pretty good. I still had chronic headaches, but they didn’t really interfere with life much. I had lost a bunch of weight and was fitting into 32 inch jeans again – I felt healthy and cute, and was getting confident about my body. I wore size small shirts, and bought new clothes. I had energy, I was doing things and going out.

Before, work was reaching a comfortable zone. I had confidence in my ability to rise to whatever I was asked to do, and I saw a long career ahead. I was going to school to become an engineer and get promoted.

Before, I was comfortable in being single, I was self-reliant and independent. I could do anything by myself.

Before, I never really thought of myself as particularly important or special. I had people in my life I adored, but never felt worthy of their adoration in return.

Before, I never thought about death much. I knew academically that I agreed with assisted dying, I knew that getting paperwork done way in advance was important. I knew I should have an advance directive. I knew it happened to everyone, I knew on a high level what happens and that there’s a ton of complication and high emotion when it occurs.

A year ago today, I was in the middle of the Medical Folderol and had recently discovered I couldn’t stand on my toes anymore. A year ago today, I sat in Dr. Goslin’s office and stared at her hands while she told me that I have ALS.

After, I use leg braces, knee braces, and a cane to help me walk. When I walk down the hallways at work, I usually don’t bring the cane, but walk with one hand brushing against the wall the whole time. My social worker called it “wall surfing”. Walking a block exhausts me. I carried five empty boxes up the stairs last week, setting them on the steps, walk up a couple of steps, pick up the boxes and put them a few steps higher, repeat. I was sweating and out of breath by the time I was done. Walking the mile to the bus stop is out of the question. I carpool with an awesome coworker in his big red truck, and I know there’s going to be a time soon that I can no longer physically get in his truck. I can’t manage the one step up into my house, I have to brace my hands on the doorpost and pull myself in and up.

After, every crowded room is a minefield. Who is going to knock me over? I carefully watch my entire perimeter for unexpected people, or someone in front of me stopping suddenly. Every social interaction is a potential disaster, far and above my usual social awkwardness. There’s no more casually walking around, I have to be keenly aware of movement around me so that I don’t get tripped up or knocked down.

After, everything is a matter of energy budgeting. I wake up already exhausted, and everything is so much harder. My muscles have to work overtime to compensate for the ones that suck. There’s no more “just a quick trip down to the store room” at work. I have to plan that effort. Every little thing sends me in to a sweat. It’s super sexy. There’s no more getting a wild hair and deep cleaning the bathroom. Some weeks the bathroom doesn’t get cleaned at all.

After, my weight ballooned back up. Stress eating. Bleh. But the medical professionals encourage you to gain weight and keep it, with ALS. Heavier patients tend to have better prognoses. And you need that fat, for when you’re not able to eat anymore, like a whale living off its blubber. “Don’t go crazy, you don’t want to need a bariatric chair or anything, but..be nice to yourself and eat what you want.” Cause…fuck it, I’m dying.

After, I’m working hard to sell my house that I love and fought for because it’s becoming a physical impossibility to live there.

After, I am intimately aware of the legality and the complications of death. I’ve met lawyers and social workers and it’s more complicated the further you go. There’s nothing simple about the bureaucracy of death.

After, I know damn well how I feel about assisted dying. And I intend to exercise that right, if it comes to that, and it infuriates me that it’s not an option for Alzheimer’s patients, too. And an option everywhere. Brits should not have to take a permanent vacation to Switzerland to die in a strange hotel-like room. For a lot of money.

After, I am so, so, so blown away – daily! – by how much I seem to matter to people. By the sheer quantity of people who have stepped up to do something, even something small, to make my life a little brighter, simply because it was in their power to do so. And they love me. I thought I was insignificant, someone nice to be around, but certainly not someone who mattered much, and I’ve been told and shown how wrong I was. Constantly. In surprising ways.

After, I know how much I have impacted lives around me. I know how their lives impact mine. I know how important a seemingly insignificant gesture can become, years later. How memories define you, and can change your life without you realizing it. How important it is to reach out to people, all the time, because you never know who will show back up and be a key player when drama unfolds.

After, I know my strength. I know my calm and my pragmatism were not just theoreticals in my head, they are actual and they are real, and they will help me get through this. I know I have the grace and the quiet power that can see me through everything to come, because they have seen me through this far. I know my humor and my compassion will go far and help me survive for as long as I can.

After, I know that I’m seriously a morbid bitch. My dark sense of humor prevailed, and I’m finding things funny that would have appalled me had they been about anyone else. I am in love with a web series called Ask a Mortician, fascinated by the machinations of how we deal with death. I seriously believe we have done ourselves a terrible injury by trying so hard in the last hundred years to pretend that death doesn’t exist, it’s something that happens to other people. Because sometimes, it happens to you. And we, as a society, have forgotten how to deal with that.

After, I am intimate with the kindness of strangers. It never ceases to take my breath away, and it is so life-affirming when a total stranger gives me a kind word, encouragement. When total strangers sent me money to help. When a woman I’ve never seen before or will ever see again looks me sincerely in the eyes and says words of love and strength. And means them. It’s one thing to be told, “Good luck” or “have a nice day”. It’s another to feel someone reach out with their soul and tell you that they wish you all the best, and to keep up my optimism because it will see me through.

After, a year later, I reread my blog and see myself shift in little ways, and discover opinions I never realized I had. I see myself think about hard things, make difficult decisions, and become stronger than I ever thought I’d be. And I know that I’ll be okay.

Before, I didn’t know if I would ever have had strength and support to see me through After. After, I know love and support and strength and grace I would never have discovered Before.

After, I know that by the amazing and profound love of the people in my orbit, I’m going to be fucking FANTASTIC. And I can’t wait to see what the next year shows me.

Clearing Out

We had a huge moving/charity thingy sale last weekend. We could NOT have asked for better weather for it. It was warm, sunny, and beautiful. In the course of our three day sale, I learned some things:

1. People like slowly driving by sales and magically determining that your sale has nothing to offer. And sometimes even if they stop, they don’t bother turning the car off.
2. People will haggle over a $1 item, even at a charity sale.
3. If I had a dollar for everyone who inquired if my ladder were for sale, I could have bought a new one.
4. Dude who offered me “like, around twenny bux” for a $300 collectible KNOWS about Masterworks Replicas, man. He KNOWS.

Also, I was shown, yet again, that I have an amazing support network. Folks I haven’t seen in person in years showed up. People I’ve only known online showed up. Friends donated things to the sale AND bought stuff. After three days, we were exhausted and done and a little bit richer and a lot lighter in stuff.

In between the chaos and crowds, I watched things that used to belong to me become someone else’s. And rather than melancholy, it made me happy. It made me happy to see my Wishbone plushie go to a girl who knew who he was. It made me happy to watch a kid’s face light up when his mom said, yes, he can have that. To watch a woman buy a set of manga – in Japanese! – that I was sure no one else would want. At the end of each day, I looked at the garage, less full, and looked at my friend Danielle, running the show and doing ALL THE THINGS, and was so, so grateful.

The sale was born of grief and hardship. It is to offset the upcoming cost of a horrible thing, and to lighten my load for the move(s) to come. It was hard – SO HARD – to go through my things and decide if didn’t need that thing anymore, with the added implication of, “I don’t want someone to have to deal with this when I die so I’ll get rid of it now.” And I gave up some of my treasures because I knew they were useless treasures to me anymore, and they might become someone else’s. A new life instead of shoved in a box until my brother goes through my stuff when I’m dead. And so I let things go.

And I watched the teenager walk away, hugging Wishbone, and was content with my choices.

Learning New Can’ts.

Every day is a voyage of discovery.

I have recently discovered that I can no longer stand up from a seated position without either swinging my arms wildly in front of me for counterbalance, or using my hands to lift my butt off the seat and pitch forward. I have also discovered that I can’t go in to my backyard when it’s muddy anymore, not even to close the shed door because it’s raining hard and the floor inside is getting soaked, because I WILL fall in the mud and bend my umbrella and muddy the hell out of my hands and knees AND lose the freaking key for the shed lock somewhere in the grass. I have also discovered that I can’t step over the threshold of my house without pulling myself up on the door frame or something. Stairs are becoming akin to mountain climbing.

I’ve had two proper falls since the last Amtrak one. I fell on a wet inclined driveway with mulch while getting out of a car. That didn’t hurt too badly except for very nearly ripping my middle fingernail off. That really sucked. And then I had a fall in my driveway while carrying things inside the house. It was my own fault, I was carrying things with both hands and I have recently discovered that well, I should not be doing that. The fall wasn’t horrible, I didn’t break anything, just skinned the hell out of my elbow and landed on my foot wrong enough that my big toe was a solid bruise for a few days.

Lessons learned.

On the plus side? My arms are fucking BUFF now.

I had my follow up appointment with Doctor Goslin last Wednesday. We mostly talked about meds, new insurance, and stupid administrative crap. She checked my strength in my thighs and hands and arms and was satisfied with the rate of decline – there wasn’t any. My calves, though, are basically devoid of useful muscle now and my feet are done. When I don’t wear shoes in the house, my feet just drop on the floor with each step – I call it froggy feet. I don’t walk down the stairs so much as clomp.

The last time I saw her, she recommended a sleep study to see if maybe my exhaustion was in part because I don’t sleep well. The sleep study found mild sleep apnea – no surprise, it runs heavily in my family – but nothing to explain the lack of energy. I’ve got a follow up study on Valentines Day, how romantic! And I’ve been referred to a pulmonologist to see if they have any recommendations about that, but I’ll probably be getting a CPAP machine. It will help with keeping my lungs strong, if nothing else, she said. I can see that. I have no idea how the cats are going to handle it. It doesn’t make so much noise once it’s on your face, but still.

Today, we start the voyage of discovery that is med changes. I was out of Nuvigil about a week before I had my appointment with her, and OH MY GOD the difference. I went straight back to sleeping 18 hours on the weekends and nearly falling asleep at my desk all the time. I went home from work and crawled in to bed with my laptop and passed out at like 9, those nights. Because this is a new year, new insurance, she tried to prescribe me adderall again, and gave me samples of Nuvigil just in case.

Insurance denied the adderall. But not a blanket denial! Just..she had prescribed one to two a day, and they only covered one. It’s the second to lowest dose of it, and I was only ever going to take one anyway, but it took a couple of days to sort it out. And by couple of days, I mean I just got it yesterday. Today’s the first day, we’ll see what happens.

It’s a world of flux and change, even if I have the answers. I know I’m going to lose my ability to walk, but it’s a question of when, and discovering daily the new can’ts. I discovered that I can’t function without some sort of energy med. I don’t have an answer why not, yet, but it’s a new can’t.

But sometimes can’ts are not a bad thing. I can’t do this on my own, because I have people who love me and won’t LET me. I can’t stop moving forward, even through all of the can’ts, because I have so many people carrying me.

I can’t stop believing things are okay, because I know they will be. They’re gonna SUCK and be full of more can’ts than I could ever imagine, but somehow, it’ll be alright. Things will work out.

It can’t happen any other way.

Life, Death, Something in Between

Metarie Cemetery, NOLA

Every city is a person. San Francisco, for example, is a cooler-than-you power player by day, club kid by night with a serious drug problem and crushingly low self esteem. He’s beautiful, but the kind of beautiful you regret finding in your bed in the morning when his makeup’s come off and you see what he really looks like. Sacramento is his younger sister who wants to be as cool as her older brother and tags along to his parties, but she really just doesn’t get it, and won’t, ever. She’s self important and destined to be either a politician or homeless, depending on whether she’s willing to sell out or not. Portland simultaneously hates himself and thinks he’s better than everyone else, writing mostly bad but occasionally amazing poetry, while drinking whisky flights and watching the rain mist over the concrete outside his rent-controlled studio apartment downtown. He’s beautiful, quirky, and surprisingly athletic, which is amazing considering you’re pretty sure he lives mostly on coffee.

New Orleans is a man who laughs too fast and too hard, talks too much and too long, drinks to work up the nerve to socialize and then keeps drinking until he’s sick, the sort of drunk who can turn on you without warning. He’s a fantastic pal to hang around the town with because he knows everyone and doesn’t mind introducing you, an amazing cook able to whip up the most amazing meals faster than you can blink, and overall will show you a damned good time as long as you’re buying. He’s got a timeless sort of tired beauty, the grace of a man who’s been through some really rough times, and the charm of a desperate charlatan in need of some quick cash. He spends way more than he earns in an effort to make himself seem far less tired and sad than he feels, and he dates twin sisters Life and Death. When Life has partied herself out and goes home in the morning, Death visits by day and they stroll among graveyards and quietly share memories of happier times.

He needs the love of both women to be allowed to be who he is.

New Orleans is a larger than life, boisterous, beautiful place. In some places, the beauty is plastic and painted on, but there nonetheless. In other places, it’s quiet and stately and dignified; beautiful if you notice it or not. Everywhere you look, death and life are married and inseparable. Among the touristy, horrible glitz of Bourbon Street, there’s a smell of sick and decay and deteriorating sidewalk rubble to trip you up at every turn. Among the quiet graveyards around City Park, plants grow between the cracks of the crypts, the living wander freely, and the whispering of traffic is never far off.

New Orleans remembers what it’s like to have a healthy relationship with death.

We visited a very beautiful paper and pen boutique in the French Quarter, called originally enough – Papier Plume – and spent a fair bit of time looking at the most elegant instruments for committing ink to paper. Beautiful glass fountain pens, calligraphy pens, ink of every shade, and journals of artisan paper for keeping track of your life in. Everything you need to spill your living thoughts on to dead trees. As a sort of team memento thing, we all three bought glass fountain pens. We spent more time deliberating on ink than we’d spent choosing the pens, and I’m grateful and surprised that the shopkeeps never got the least bit impatient with us. I found shades I loved, but was dismayed that they weren’t permanent ink – they would fade in light or run when wet. The shopwoman asked why I was so set on permanent ink.

Colin looked back at me for a moment unsure of how I wanted to proceed. I smiled gently. “I ..have a terminal disease,” I explained, “and I mean to use these to write my farewell letters.”

She was quick to recover, immediately understanding and warm. She expressed her condolences, particularly when I mentioned ALS specifically, as – with so many people I’m finding – someone she knew had been lost to it. We made our selections, and she sincerely wished me luck. I appreciated it, and told her so. New Orleans was such a wonderful melt of life and death, that it wasn’t awkward to have that conversation. I only mentally dwelled on it at all in order to marvel at how normal that exchange seemed, before putting it away in my memories.

Several times I felt like I ought to have been somehow overwhelmed by it all, achingly sad to know that it’s the last time I’ll be in that city, thinking on life, death, the afterlife while sitting in St. Louis Cathedral, waiting to be moved enough to weep, and never really feeling like I needed to do so. I felt very comfortable and at peace there. I did not need to mousecreep my way through social interactions, because death was a part of life there. No explanations, no apologies needed, just a warm bath of understanding at the very core of the city. Time enough to relax and revel in a healthy attitude towards death before returning to a world still terrified of it.

I could never live in New Orleans, but it was delightful to be in his company for awhile. I’m grateful for the chance I was provided. Seven days being allowed to be what I needed to be, with two amazing people who love me to the ends of the earth and with whom I feel safe enough to relax my constant need to assure everyone I’m okay, and admit when I’m overwhelmed and need to sit down a bit. Seven days to live and eat and breathe and sleep for a week in a city that made me feel welcome and …normal.. enough to drop my guard in public for a little bit and just be unapologetically weak and flawed and alive.

A chance to be a dying woman in a city perfectly okay with death.

Thrown Off, and Thankful

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.

Followup to that last thing

1) I told that to my therapist last night and he got a bit weepy. Awesome.

2) I sent her an email this morning to thank her for her words, that it was one of the sweetest things anyone has ever told me, and she said, “I thought I was stating the obvious.”

She finished with “Just keep it, joy is something that heals and grows.” And it does. And I’m once again so grateful for the planets in my orbit.

Special offers for a limited time only

I’m taking Amtrak to see my friends Megan and Colin for the weekend. It’s a really nice, leisurely ride through some beautiful scenery, you don’t even notice the three hours gone by. I’ve taken this ride a few times, loved it each instance. SO SO SO much better than a bus. My Greyhound days are behind me, that was enough weirdness tto cover the rest of my lifetime. I don’t know WHAT it is with me and public transportation, why I attract the strangeness. Luckily Amtrak is immune to that. Yay!

I got a little preferential treatment..or different treatment this time. It’s been awhile since I’ve been on Amtrak, this is the first time since the diagnosis. I was asked if I needed help out to the car; I said I did not, I walk with a cane, but I’m still walking, you know? I was hoping he’d put me in a single seat, because that’s easier to get out of, but that’s alright. I’m not yet so far declined that I need that, just..it’s nice to have.

While I waited, I sat beside this lovely woman. She asked if she could sit beside me, and I told her of course. She explained she has Parkinsons, and that her disease makes her tire easily. I told her I know something about that and smiled; she did not recognize “ALS” but she knew “Lou Gehrig’s”. She said she was really sorry, I was so young, and that…was pretty much it, which is awesome. No dwelling, just acknowledge and move on. I don’t at ALL mind questions about it – please ask me ANYTHING! – but the conversation tends to get dark when they dwell on it. There’s a difference between curiosity and just..awkward. Instead, we talked about nail polishes and kids and traveling, and how stupid it was that everyone was lining up to get on the train when we had assigned seats.

“I’m waiting right here,” she told me firmly.

“I’m with you,” I grinned.

When we headed out, we got a club car ride to our cars. OH MY GOD so awesome. Seriously if you have to have a disease, it should have some perks, and apparently club car rides to your train car are part of that. Front door service, man.

I did, however, have a HELL of a time getting on the stupid train. The steps are steep, and I basically had to grab the hand rails and haul myself up. It was…not easy. For a second I wondered if I was going to be able to pull it off, but I did. The club car driver was careful to wait and make sure I got on okay before he drove off with the other woman.. I won’t be able to do this much longer. Mark one more thing I am losing.

But fuck it! I can do it for now. So for now it’s fine. I’ll take it. The lady and I wished each other a happy life.

The point of the trip is to put together a cookbook of my pastry recipes while I’m still able to use my hands. I think it’s a great idea, I’d really like to document my stuff, and I have a lot of fun writing the recipes out, so why not. Colin and Megan will take pictures and typeset the thing, we’l all bake delicious things and eat until we’re fat and sassy.

It’s been a really strange shift in mindset – “while I am still able”. It’s hard to think of things in those terms, and I have a really strong sense of pressure to do as much as I can, while I can. I am though, inherently lazy and I just don’t wanna. So it’s a constant fight between “do this because you won’t be able to later” and “hey let’s curl up in bed with the cats and watch How It’s Made all night”. There’s a balance there, I haven’t found it yet. It’s the same fight with “I want to fit into my clothes” and “EAT ALL THE THINGS! FUCK IT! I’M DYING!”

Just like the balance that the universe seems to be deciding on for me, between being helped and what ALS is taking from me. So far, ALS is winning, and it will continue to, but that’s alright. The universe is mostly balancing it out by showing me just how much people are willing to help me when I need it. And even when I don’t. I don’t have to ask – folks just show up and ask me to let them help. It’s overwhelming and awesome and I’m sorry it took a terminal disease to show me how many amazing people I have in my orbit. I’m still learning that whole “let people help” part, that’s hard.

So uh, this post really has no point. Like most of them. Just, hi. This is what’s going on. And I kind of wanted to get something else up here to move away from the talks about assisted suicide because MAN that was hard to write and I know it was really hard for you guys to read.

But again. You guys overwhelmingly showed me support in my decisions and thought processes. Even those of you who disagree with Death with Dignity, still voiced support in whatever I chose to do. I love you. I literally could not face this without support from you all, and I am incredibly grateful. I’m grateful to the conductor who asked if I needed help getting on the train, I’m grateful to the club car driver who saw the cane and offered me a ride, I’m grateful to the lady with Parkinson’s for keeping me company for a little while.

I appreciate the special offers, even if I’m able to take advantage of them for a limited time only.

Thank God for Happy Planets in My Orbit.

Chat Log from today.

Eric: you write to much
going to need you to cut that down to like 2 paragraphs
thx

me: TL:DR – GONNA KILL MYSELF SOMEDAY AND YOU CAN’T DO NOTHIN ABOUT IT

Eric: yeah add a tl;dr on that shit
process improving
😀
but do tell me before it happens

me: I will. fo sho

Eric: i need to know so i can come steal that zombie tramp poster before anyone else
you know how it goes

me: hahaha I will make sure you get it.

Eric: and your baking stuff then we’ll call it square for all my years of service

me: hmmmm baking stuff might be a hard sell
I can add you to the pool of people to divvy that shit up

Eric: i dont want the divy
i want it all
im more qualified than anyone else

me: ….besides Eryn who went to culinary school with me

Eric: with my deep german baking heritage

me: hehehe

Eric: do i hear bake off?

me: XD

Eric: ok ok
if i make you the most amazing black forest cake
you put my name in the hat twice
deal?
k deal
and now i take my leave
to go sit in a class with people who dont even take notes

me: ok bye

Eric: DEAL
poof

me: (you forget I don’t like chocolate cake)

Eric: no i dont
but you’d eat it because it was the most amazing of all cakes
then you’d be like, shit my als is gone
too amazing
too
amazing

me: hahahahh I <3 you And I really do. Eric’s a good kid. The little brother I never had, even though I have a little brother. He is my spark of mischief, I am his Jimmy the Cricket.