How to Help in Three Easy Steps!

Howdy folks! Brought on by a recent incident, which I will tell you about in another entry, the question was once again asked, both directly of me and in a general forum:

WHAT DO I DO WHEN I SEE A PERSON STRUGGLING WITH THEIR HANDICAP?

Maybe you just saw a blind person attempting to cross the street and having a hard time. Maybe it’s a person in a wheelchair having a rough time pulling something off a store shelf. Maybe you just witnessed me try to get up in to a tiny-ass unstable boat and fail miserably in front of Anne Wheaton in Loreto, Mexico. Whatever the incident, there is someone with some obvious difficulty in life trying to do A Thing and you’re not sure how to proceed. Well, as a public service announcement, I’m here to help.

There are three easy steps*.

1) OFFER YOUR HELP.

Seriously, you’d think this was obvious, but the Bystander Effect is a real thing and you’d be appalled at how often no one says or does anything. Don’t be a grandiose dick about it, just approach the person and offer a specific way you can be of help, or ask if there is something you can do. “Hey, can I grab something off the shelf for you?” “Do you want a hand across the street?” “The boat crew clearly have no fucking idea how to get you off the ground, how can I help get you up?” DO NOT – UNDER ANY CIRCUMSTANCES – ENTER PERSONAL SPACE TO HELP WITHOUT ASKING. Hooooly HELL you would think this is common sense, but I wonder how many blind people have someone just fucking grab their arm and start pulling them across the street. Just ..don’t do this. Don’t start trying to haul me to my feet when I’ve had a fall. I need to muster strength for the attempt, for one, and it’s just incredibly invasive to have a stranger start grabbing at you when you’re already at a very vulnerable moment. Politely announce your presence and ask if you can help. And then…

2) ACCEPT NO FOR AN ANSWER / ASSIST WITHOUT MAKING A BIG FUCKING DEAL ABOUT IT

Sometimes the answer will be “No, thanks.” Accept this and move on. This person’s difficulty is not your Heroic Moment; they are not here to provide you with your Good Deed For the Day. They’re just trying to get some shopping done/cross the street/get on the goddamned boat/live their life like a normal person, and are under no obligation whatsoever to accept your help, even if everyone in the world can see it would be so much easier if they’d just get over it and accept the help. Graciously allow them to decline and move on with your day.

Alternately, if they accept your help, Do the Thing. And give zero fucks about it. Don’t make a big show about helping; just grab the whatever for them, help them across the street like it ain’t no thang, whatever. They will say thanks. Tell them it’s no big deal and believe that it is not. I, for one, would be so much more willing to accept simple assistance from strangers if people were extra chill about it, but usually they act like a big damn hero about the whole thing and I’ve suddenly become someone’s Inspiration Porn and I can already HEAR them telling their spouse when they get home about how they helped a woman in a walker pick up her dropped purse. Just pick up the fucking purse and hand it over and go on with your life. You’re not curing cancer, here, you’re just holding a door for someone who can’t walk.

Whichever option was chosen, the next step is the same….

3) PRETEND THE WHOLE THING NEVER HAPPENED

Most important. THE MOST. If it was a routine thing that you might have done for anyone, like opening a door or helping someone get something from a shelf, then it’s already no big deal and a part of life. Move on. If it’s something like a fall recovery or an unexpectedly needed assist (hello, hands suddenly not working so I can’t swipe my own fucking debit card!), then it’s almost certain that the person in need of help is embarrassed by the unwanted attention already. It’s humiliating to fall on your ass even if there isn’t a disability involved. Whether or not there was a celebrity watching. It’s ALWAYS my most fervent desire that the whole thing would be forgotten immediately. This also ties into the whole “I’m not your good deed” ideal, but primarily? I’m embarrassed to have been caught publicly in a weak moment, whether it can be forgiven due to disease or not. Act natural. Make sure they’re okay, and then forget the whole thing. Please. Don’t make some weak-ass joke, or reassure me that it’s okay and natural, just..pretend it never fucking happened in the first place. Whatever’s whatever, man, no big thing, not even worth mentioning. EVER. AGAIN.

That’s it!

OFFER, ACCEPT/ASSIST, IGNORE.

The only miiiiiiiinor correction to this may be to ignore that I said no thanks and it turns out I DO need some help. Then you may add RESIST, as in RESIST the temptation to say “I told you so” when I accept that I do need assistance after all. I’m still learning my own limitations, and they change every day. be patient with me in this, and I will be patient with you as you learn The Steps. We’ll help each other out, okay?

*Your mileage may vary. Some disabled people are total assholes about this sort of thing. This is just what I think is most useful, for most people.

sadbrain

I’ve had depression most of my life. I’m really, really lucky in that it’s a super high functioning depression; most of the time I can still convince myself to Get Shit Done. I know many, many people who aren’t that lucky. Most days, I can get out of bed even though I don’t want to and my brain asks what is the point, even, and my anxiety tells me a million lies a day that I can usually push aside and do things anyway. A lot of folks with depression are like this; we’re not all like the commercials show you.

Some days though.

Some days it really IS like that. The days you call in sick because you literally just….can’t. The days you cry, the whole day, for little or no reason at all. When you spoon food in your mouth and it sits there, unchewed, for like five minutes. The days when your cat looking up at you and meowing (as he has a million times) is suddenly the worst thing ever and you just shake in frustration because you don’t know what to do. About the meowing, about standing in your kitchen, about being alive at all. And then you go to bed and the next day it’s fine, and it’s like you were possessed. If you’re lucky and female, sometimes you realize that the depression is PMS in disguise and somehow just knowing that takes the sting out. It’s temporary. It’s going to be okay, even if you don’t feel like it right now. Which of course is the same thing you tell yourself the OTHER days, too, but with nothing concrete to point at, you never believe yourself.

Depression and terminal diseases are tricky. Because you have a PERFECTLY legitimate reason to be sad, but you know in those slumps that it’s not why you’re crying. When they talk about your meds, and ask how you’re doing, of COURSE you’re low; you have a terminal fucking disease. Separating the mind disease from the physical disease becomes a very demanding and complicated thing, and of course you won’t get it right all the time. You don’t want to bump up the meds and become a zombie if your uptick is just cause you’re quite reasonably sad; it’s only for the sadness you can’t help, the depression that is there for no other reason than your chemistry is off and your brain hates you. The I-have-hella-circumstances depression can be medicated too, but I don’t like the idea of taking something all the time for something that’s legitimately situational and not just chemical. I like having an as-needed med for those times.

Wednesday was one of those times.

I think it was triggered Tuesday night; I found my newt dead in his tank. Now, the newts were always just above furniture, the same as a fishtank; they hated to be looked at, much less TOUCHED. They were low maintenance, you top off the water when it evaporates and toss in a couple of frozen bloodworm cubes once in awhile. I wasn’t particularly emotionally attached to these animals. The cats found them enchanting, I called it Newt TV and it was Molly’s favorite show. I always felt a little guilty for not getting more enjoyment out of them, surely there was some kid out there who would love these neat little pets more than I, but they were perfectly happy being completely ignored. They looked like pissed-off old men, and I named them after the old heckling muppets, and we coexisted. I was upset when Molly somehow pulled the screen off the tank and she either killed one of them outright or put it on the floor and it dried up and died outside of its tank; it seemed like it was an easily preventable death and I should have noticed he was missing from his tank before he had a chance to mummify in my living room. The last newt, I’m pretty sure died of natural causes – there was water in his tank and he’d CERTAINLY gone longer without being fed before – but I failed to notice until he’d had time to partially decompose in there. It was a warm week, probably didn’t take long for that to happen but I was still horrified with myself. Not guilty, he didn’t die because of neglect, just…I should have noticed that a living thing in my care was no longer living before then. I felt shaky and weird, horrified at his little corpse that I just couldn’t bring myself to fish out of the tank just yet, and went to bed after taking an Ativan.

Wednesday was work from home day. My stomach felt…off..so I called off the housecleaner. And then at some point during the day, sadbrain kicked me in the head. Everything was wrong. Work was frustrating and seemed hopeless. I checked Facebook to distract myself, but that turned out to be the absolute WORST thing, because not only were several friends having terrible things happening to them, but the world was full of screenshots of a dead black man bleeding in the street next to his car. And then I lost my shit. And cried and cried. And then went to sleep for a bit, and woke up crying, and everything was the worst. For the rest of the day, I couldn’t stop crying. The slightest thing set it off, and when you have ALS and the slightest things are stupidly difficult already, the world just seemed …too much. I had social obligations that night, and begged off instead, because I didn’t know if I’d ever stop crying. And then I watched television to distract myself, and HOLY SHIT WAS THAT A DUMB THING I DID.

OK. So. Something about me and my broken brain. This sounds stupid, but, welcome to how my personality disorder works. Look up Avoidant Personality DIsorder, and read all about my dumb brain. I have a really hard time watching new shows, because they’re an emotional risk. I just don’t know how they’re going to make me feel, so I have to be REALLY REALLY brave to try something new. I usually have some kind of an “in” – it’s recommended to me by a friend who knows about my broken brain, it’s by a writer whose work I trust, it’s so dang silly it couldn’t possibly be harmful. Otherwise I stick to ‘safe’ shows, like nature specials (Sir David Attenborough is legit one of my favorite people on the planet), cooking shows, How It’s Made.

So I picked this show that had just been added to Netflix:

Dream Knight (드림 나이트)
Alternate titles: 玩偶骑士
Starring Song Ha Yoon and Im Jae Bum (JB)
Though she’s constantly bullied, orphaned high schooler Joo In Hyeong (Song Ha Yoon) refuses to let life get her down and fills her little home with positive vibes from her favorite boy band. But fandom hits the next level when she discovers the ability to call upon four mysterious hotties (played by GOT7), who turn her world topsy-turvy with magical and hilarious antics, including JYP artist cameos. No matter how tough life gets, she’ll get by with a little help from her friends, especially with dreamy knights!

HOW COULD THAT HAVE GONE WRONG. I mean, it even had wacky sound effects and live-action cartoon antics. Only…she lives in a trailer because her mom died suddenly. Ok, I’ve seen anime like that before, that doesn’t HAVE to be depressing; it can lead to wacky misunderstandings involving four boys unsupervised in a single woman’s home. Classic harem anime formula. Four gorgeous guys show up, but they’re really magical dolls born from her tears of despair, here to make everything better! And what she wants most in life right now is to win a dance competition so she can dance with her favorite idol! Only she can’t really dance because she’s clumsy! THIS IS A COOKIE CUTTER FORMULA. Throw in the “oh noes, when her wish comes true the magical dolls will disappear!’ trope that ALWAYS FINDS A SOLUTION (hint: she falls in love and true love’s kiss saves him!) for good measure. Why not. Oh hey, loophole that if they kill her, they can remain human! O NOES (whatever, they totally won’t betray her).

Only..

Only she lives in the trailer because her aunt fucked her out of her mom’s fortune. Only she’s clumsy because she actually has myasthenia gravis! What’s that? OH ONLY A MOTHERFUCKING PARALLEL DISEASE TO ALS THAT CAUSES MUSCLE WEAKNESS AND EVENTUALLY PARALYSIS. No big deal, not fatal, right? Nothing to be upset about as a viewer? Oh, what’s that? Her disease is progressing quickly and she’ll be paralyzed within a year? Is that her and her knight finally falling in love even though the other knights have decided to betray her after all and she doesn’t know about any of this, including the fact that they’re not human? Is that her praying to her dead mother to give her the strength to dance really well, this one last time, with the man she loves? And then afterwards, she is going to break up with him to spare him a lifetime of taking care of a cripple? Oh, is this her winning the competition, everything is happy, wait a minute ARE YOU FUCKING KIDDING ME THEY ACTUALLY DO DISAPPEAR FOREVER AND THAT IS THE END OF YOUR SHOW YOU ASSHOLES.

After triggering a lot of ALS/terminal disease buttons, you’re not even going to give me a happy ending to your stupid boy band television live action cartoon?

ARE YOU FUCKING KIDDING ME.

….so yeah I cried until I nearly threw up, cried until I gave myself a migraine, called in sick the next day and cried that whole day too. Zootopia was released on Netflix, but I knew it was a not-even-bothering-to-veil-this analogy for race, and after sobbing in despair for a couple of hours about race relations ALREADY the previous day, I avoided that trigger. And just avoided the internet best as I could. And slept. And I don’t menstruate anymore so I couldn’t even lie to myself that it was temporary, and I thought about just not showing up to life ever again, and slept some more, and took more ativan in three days than I’ve taken in the last six months. And slept. And Friday came, and I was no longer crying, but so bone-tired that all I could do was sleep some more.

And the tricky part is looking back at that and trying to figure out what was Depression, and what was Disease. My feelings had a reason; their intensity did not, necessarily. Because I need to decipher what the situation really was, what were the triggers, in order that I might avoid them in the future and not lose three days of my life to crying and sleeping the next time. The dead man on my feed, that was obviously a real trigger, and there is most decidedly some very real buildup to that breaking point – you’ve read the news or failed to avoid it as much as I have. I had reason to cry over that. Maybe not so long. Friends’ issues that came up, I don’t know that there would have been tears to go with the empathy otherwise. Not sure. The frustration that my hands cramped up when I tried to eat something, real. Intensity, probably uncalled for. Etcetera. I have to unpack all of these things, examine them carefully, and put up traffic cones around the ones likely to make me slip again. There is certainly an element of the single straw that broke the camel’s back, here; a lot of kinda shitty things have been going on lately, a lot of micro-stresses, and the weight of the major ones combined, and the dam broke. I was way overdue for a cathartic cry. But not so hard, not so long.

ALS has added a layer of difficulty to this process. I can’t just shrug it off and say fuck it, I had a breakdown, maybe it’s time to try a new med. I’m paying much closer attention to all of this, for as much as I could easily play the “I’m Dying” card when I freak out and withdraw, I don’t WANT to unless it’s true. I don’t WANT to give myself permission to ignore causes and allow myself to drown in slumps like this without trying to figure out how to never do that again. My life is too short to allow whole days and weeks to be wasted if I can do something to avoid that. I quite literally…do not have time for this.

And if I’m being honest? Neither do you. Please look after your mental health, babies.

FORTIFY

on top of gravity:
I asked one of my (male) friends to stop using the phrase “man up” and he has been using “fortify” for the past two weeks instead and it’s just a little thing but honestly it makes a difference
and tbh it’s also pretty funny when I start to deflate in the library and he leans over and goes “FORTIFY”

Seriously try that. J and I use it now and it’s awesome. Sometimes when I’m whining, even though he knows I have every right to (CENTER CIRCLE, BITCHES), he will just grin and shrug and say, “Fortify.” And I will flip him off the best I can, and we laugh and go about our lives.

There will be a real post soon – I know I keep telling you this. But Monday is Clinic Day so there will be lots to report on that front. Meantime I thought I’d check in with just a quick thing about the weekend.

It wasn’t particularly kind, if I’m being honest, but there were moments of goodness interspersed, for certain. I mean, it started with a road trip to Olympia to see a black metal show. How is that not awesome? I’m not generally in to black metal, but Wolves in the Throne Room are an exception. They’re not so much Black Metal as…Black Folk? It’s more melodic than the usual stuff, and they have been properly described as “atmospheric black metal”. None of the cheesy SATAN666OMG stuff. I like it. It was two and a half hours away, on a school night, and the venue was this ADORABLE little place that served surprisingly delicious food and had the cutest waitstaff OMG and delightful bathroom graffiti (next to the signs that declared said bathrooms to be transgender friendly, use whatever restroom coordinates with your identity, and if someone gives you a problem, please report their asses and they will fix it). The music of course, was WAY too loud for the small room, and the geniuses decided that a smoke machine was a good idea so I spent some time breathing through my shirt, and then some jackass decided that you know what this concert needs? For me to blaze up in this tiny room.

So yeah I had a headache.

The show was awesome though, a dear friend in Seattle had joined us, and the opening act was every cheesy stereotype I could hope it to be, including announcing themselves in a Cookie Monster voice “WE ARE BLACK! FUCKING! CANCERRRRRRRRRRRRRRRRR!” And yet, the whole time I was listening, I was so tired I felt like I could fall asleep any minute. Even with Cookie Monster screaming about forests or satan or whatever. I don’t know what the hell that band was about. We got home around 4, because the show was an hour late to open, and had 3 bands, and was two and a half hours from home. I had wisely taken the next day off. I slept until like..3, and then took a nap, and then went to bed early. Working all day and then car ride and then socials and everything was way too much and I was DONE for the whole day.

Saturday I FINALLY got my Fallout 4 install working. I’d had to reinstall my operating system, so everything is cattywampus still, and I hadn’t played in forever because getting everything how I like it was just too daunting most of the time. So I finally got all my add-ins working, got it set up for use in the bedroom so I can lounge and play, annnnnnnnnnnnnnnnnnd…..discovered my hands don’t work well enough to play on the wireless keyboard anymore. My left ring finger seriously droops, and that’s the finger that controls moving LEFT, soooo….unplayable. I tried for a little bit and gave up. I’m going to have to get a controller. Which SUCKS because I am totally a mouse/keyboard gamer.

Sunday I had a friend come over to help me around the apartment. AGAIN – people just…show up! And do cool things! And the hardest part is always just LETTING them help. I’m so grateful I can never even HOPE to say how much. While I was shifting some things around for her arrival, I had a fall. Not a bad one at all, just…wound up on my butt. I got up with little difficulty and went about my day. I continued to think about it, but it didn’t really upset me or hurt me. Just, whoops, on the floor. Get up, move on.

That evening we went to dinner with Gecko for his birthday, and we did Brazil Grill. If you’re not familiar with the place, you sit at a table, and they bring huge hunks of meat around on swords. And they carve you some, and you eat meat until you DIE. And then they bring you cinnamon sugar glazed pineapple and you know you’re in Heaven. I love this place. Only trouble is, when they carve off that beautiful slice of tri-tip, you have to grab it with your tongs and take it to your plate. I had to use my tongs with my whole fist, and still didn’t quite manage to grab it a couple of times. The delightful gaucho (dude with the meat sword) apologized every time, but it was clearly ME dropping it, not him cutting, and I wanted to tell him “It’s not you, my hands just don’t work” but I didn’t. I wound up putting my freakin’ boob in my plate once, reaching over to try and grab the slice properly. And then cutting up the meat was its own challenge, and trying to be discreet when my hands inevitably cramped up with the effort was useless because 1) I have to do a prayer gesture with my hands to get it to stop, and 2) my brother is observant AF. But it wasn’t a huge deal, just a quiet “hand cramping?” “Yah.” and that was the end. I realize next time, I’m going to have to ask someone to grab the slices for me. And probably cut my steak.

Four slaps in the face from ALS this weekend. The exhaustion, the loss of playing video games with mouse and keyboard, the fall, knowing I’m gonna have to have my steak cut for me like a toddler from now on….and yet.

And yet.

Not once did I lose my shit, or even feel like I was going to. Or needed to. Just a quiet acceptance. The exhaustion was to be expected, and things like this are just going to require a full day recovery anymore. That’s how it is. Gaming, well, I knew that it was coming, and I’ve been keenly aware that my ring finger in particular is very weak, so it makes sense that I can’t really do it anymore. The fall, well, they’re going to happen. Until I am no longer able to get up out of a chair, and even then, I’m going to get dropped. Being unable to cut my own food in the future, well, I’m honestly glad I’m still even able to EAT steak. And I have people willing to cut it for me. Gecko and his husband would have done it in a flash, had I asked. And next time, I will.

ALS still sucks. But I’m getting better at coping with the losses, to foresee them happening and bracing myself.

To fortify.

And that’s pretty awesome.

The Week in ALS…

This should probably be a vlog post, but I don’t feel like putting on makeup and sitting in my hot office to record one, so you get a micropost update.

So to sum up:

1) The orthotics appointment for testing various knee braces was stressful and awful. Traffic was horrifying – it took us literally an hour and fifteen minutes to drive a 35 minute distance. When I called to give them a heads-up, she was AWFUL and rude to me, “Well HOW late.” “I don’t really know, maybe five to ten minutes?” “Well where ARE you.” “Two exits away, but traffic is unpredictable.” “I’m going to check with the doctor and make sure that he even has time for you.” I was literally ON the exit when she came back and told me I’d have to reschedule because they really needed EVERY MINUTE of my appointment time to work with me. “How about this. I’m on my way in RIGHT NOW. If I show up too late, I’ll reschedule in person.” When I showed up seven minutes late, they cheerfully had me fill out the paperwork and wait in the office lobby for five minutes. So I guess I’m not allowed to be late, but they can delay all they want.

And then, they had me try on a brace that didn’t help at all, made walking even NOISIER, and when I tried to take them off, I had to shove the velcro between my palms and push them hard together while I pulled at the strap in order to get them unhooked, because my hand strength wasn’t enough. And then they told me that anything sturdier would make sitting and standing nearly impossible, so they have nothing that can help me.

2) Dr. Goslin called and then emailed me yesterday (because I didn’t answer the phone) to tell me that I was disqualified for the new research trial. I did not take it very well; about as hard as I took the initial diagnosis, actually, because it felt like hope for SOME good to come out of this had been pulled out from under me. Again. I spent the entire day sleeping.

3) I woke up this morning still in a funk, and while getting ready for work, I had a fall. Just, knees gave out while I was coming out of the bathroom, and I landed very solidly on the linoleum on my knees like I’d just had a religious revelation. It hurt a LOT, and I resisted crying, but let myself just lay in the bathroom doorway for a little bit while Ianto very nervously sniffed me. Falling and getting up while wearing my braces makes everything suck worse, because it holds my ankles in a fixed and uncomfortable angle while I’m crawling. Usually when I fall at home, the first thing I do is yank my boots off if I’m wearing them, to make getting up easier. But I was already running late.

So, it’s been a terrible week on the ALS front. This is not to say the week has been terrible; I saw my favorite radio play live, with some of my very favorite people, had an awesome Saturday showing off Portland to a friend I hardly ever get to see because she lives far away, and my elderly cat is actually recovering quite well from his sickness. So yay for all those things. Yay.

And now you are updated!

Sometimes Snake Oil is Actual Medicine.

So! I had a follow up with Dr. Goslin about all the things that came up from clinic day, notably meds changes, follow up with the physical therapist, and a general check-in. I found that I had lost 5 pounds, which I am not at all unhappy about. She was unconcerned about that, telling me as usual that maintaining my weight is important; as long as I’m not dropping weight quickly it’s not a problem. Even though I miss being 60 pounds lighter, I suppose that will come in time, and that will be a problem. But until then I am fat and alive.

As far as the physical therapist goes, we didn’t find any braces that helped more than the ones I currently have. Most of them actually exacerbated the problems, particularly on inclines and declines. Instead we’re going to look into some sort of knee brace, as my knees are usually what fails when I fall. We’re thinking some sort of neoprene brace with metal supports; maybe that won’t make it quite so meat-stilty when I walk. We will see. Basically anything that keeps me walking as long as possible is a good thing, in my opinion. Ideally, also not tripping over the cats would be good.

Regarding the meds conversations, we had started me on something to help with the… er.. accidents… And something to may be kickstart the antidepressants again, as they didn’t seem to be doing a whole hell of a lot lately. Lab bladder control made is working out awesomely, we’re going to slightly increase the dosage on that. The other med doesn’t seem to be helping but it also doesn’t seem to be detrimental, so we are going to slightly increase the dosage on that. Maybe we’ll get a reaction. We are also increasing the dosage on Nuvigil, to see if we can’t kickstart my energy levels some more. In that same light, we are decreasing the gabapentin because I’m not sure it’s doing much of anything anymore, and it’s known to cause drowsiness, and I really hate taking something three times a day. Hopefully I can taper off that altogether. The antidepressant kick starter was also prescribed hopefully to reduce the migraines; I haven’t had one in a couple of months and I’m not sure if that’s working, or if it’s just that the Botox is no longer in my system.

Related to the headaches, we had a conversation – again – about the Cefaly device. When she had first talked to me about it, she had explained that she KNOWS that it looks like snake oil and seems super fake. (Seriously so fake.) The science she assured me, was sound and it had potential to be effective. Since then, she had actually tried the device and bought a few for her patients to try; a few of them reported up to 50% fewer migraines. It worked so well that none of her patients have returned it. So she wrote me a prescription for one, and almost $400 later, it should be arriving soon. The crappy part about it is that insurance will not cover it so this was out-of-pocket. Expect future updates when I finally get my hands on it. LIVE FROM THE FUTURE WITH MY SPACE HEADBAND OF MIGRAINES -2 !

We also spoke about medical trials. She hadn’t been able to attend the research symposium, so I told her about my conversation with Dr. Beckman and how frustrated he seems with his complete lack of progress. She shared my sense of dismay and agreed that an actual trial is probably not forthcoming anytime soon. HOWEVER, she told me, there was ANOTHER trial about to start. LITERALLY about to start. Like, in August. She was positively geeking out about the potential for this trial, super excited about the potential, and in fact said she felt BETTER about this than the copper trial. It’s centered on inflammatory behavior with ALS degeneration; previous trials had stopped the progression of ALS in patients with those inflammatory markers while they were taking this drug. Only 35 percents of ALS patients have those markers, though. It’s an IV administered drug, and a six-month trial; I think she said five visits for the first two months and three visits a month for the rest of the duration. I’m not exactly sure what it entails in detail, but I suppose I shall find out if I am selected for this trial. Because of course when she asked if I was interested, I said HELL YES. The trial coordinator is supposed to be giving me a call very soon to give me more information and arrange to have me tested to see if I have those markers.

So THAT’S exciting.

She also suggested, which in retrospect seems OBVIOUS, that I go to the physical therapist to learn how to fall gracefully, and how to get back up. It’s the getting back up that’s the problem, usually. So I’m going to go do that. Soon. In the meantime she gave me materials about various “med alert” type devices. Which, I realize I really SHOULD be looking into, but every time I think about it, the phrase “I’ve fallen and I can’t get up” also goes through my head. It’s one of those stupid associations, one of those steps that feels like surrender, no matter how practical and ultimately necessary it may be. I’m working on getting over that.

So that’s the haps. You are now fully updated. I’ll make a goofy video once I get the Cefaly. I’m sorry I haven’t been updating lately, the world those outside and inside has been in that sees stupid, dramatic, and sad. So I’ve been in full out capital avoidant mode, sitting in bed with my cats eating candy and watching nature TV. It’s so much easier.

I hope life is treating you kind. I hope you are safe, and happy.. And I hope it stays that way.

Too private.

“I tend to be pretty private,” she told me, as we talked of grief.

“I keep that close to my chest, usually, too,” I agreed.

“But you’re pretty open, usually? You have that blog.”

“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”

++++++++++++++++++++++++++++++++++++++++++++++++++

So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.

There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.

But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.

I have things to tell you. And I shall.

And then I was just…peeing.

I wanted the title to be something more…dramatic/appropriate/somber, but Jack asked if that could be the title of my autobiography and I said no, but it COULD be the title of this post. So. This is a glamorous post, sure to make you fall madly in love with me.

Wednesday my body totally betrayed me. I mean, with ALS it does that as a matter of course, at all times. There have been FAR more instances of yelling at my legs to Do The Thing (including one total failure and forced sit-down while trying to get in to a car lately), and opening string cheese is becoming less of a struggle and more of a “forget it, I’ll get sscissors”. And now that I’m posting this, I’m realizing how awkward my typing is now. But Wednesday there was an Incident.

It started with a fall. I was cleaning up puppy pads because my elderly cat can’t stop peeing everywhere, and my little brother was coming over to steam clean my carpet for me. Balancing while operating a machine is no longer possible. So while scooping up the wet pads, my knees buckled and I just sat down. Wrenched my ankle a bit, still hurts. I was upset, but not crushed or anything, it happens. Justin the Wonder Brother came over, steam cleaned the office carpets and most of the dining room, and then ran the Spot Bot when Parmesan sauntered in and peed on the still-damp clean carpet.

Asshole cat.

The rest of the night proceeded without incident until I was ready for bed. I went to the kitchen to rinse out my cup and get more juice (see, Dietician? I’m drinking juice instead of soda with my evening pills like I promised!) and as I’m standing there with the water running, I just..start peeing. And I can’t stop.

Now, with ALS I was told soooometimes there is some ‘bladder urgency’ because of muscle spasms. And I’ve definitely experienced that – just all of a sudden YOU GOTS TA GO. And there’s been a couple of times I almost didn’t make it. But this was the first time I just completely lost control. I couldn’t do anything about it but stand there, fervently wishing it would stop, just hold it, just wait, the bathroom is LITERALLY ten steps away, but there was nothing. Just grab the roll of paper towels and wait it out.

And when it was over, I cleaned up the mess, took a shower, and bawled like a broken thing. Because one of the silver linings in all of this was the solace I took in the fact that people with ALS generally maintain bowel and bladder control. If I have to be trapped in a meat shell, at least I don’t have to be a meat shell sitting in a wet diaper. But then this, and I don’t know what to think, and I hope it’s an isolated incident, but it was jarring and scary and I spent alllllllllllllll day yesterday in a terrific funk that I’ve still not entirely shaken.

And then yesterday my nephew fell asleep and peed on my couch so I guess my house is just kinda a pee zone. Hooray for that.

Sorry I’ve not got something more lighthearted for you today. Sometimes with ALS that’s how it is. But I’m still mobile, still alive, still working. Still mostly happy. Still loving all of you.

First Time For Everything: Dropping

Also this weekend! And something I wanted to mark down, and something I should be keeping track of, and so you get this little nubbin post.

Saturday was the first time I dropped something. I was washing a plate in the sink, and I dropped it, and it chipped against a stoneware bowl. I remarkably did NOT lose my shit! Just, “well fuck, I can’t replace this plate, they don’t make them anymore. I guess this goes with the chipped bowl from the same set, now.” Disappointed. Upset. But shit held together.

It’s not the last thing I will drop. It won’t be the last thing I break when my hands prove unable to handle the weight. Maybe if something shatters spectacularly, something I love, that will be the time I lose it. Instead, I turned the plate over, found the chip of crockery in the sink, and sighed. Time to get lighter plates.

Sometimes silence seems safer.

Hey guys.

I’m doing that thing I do, which is to just not say anything if I’m having a bad time, but the point of this space is to document all of it. All of the awesome, all of the real life boring stuff, all of the hard parts, all of the ugly bits. And while I hate burdening people with my woes, it feels disingenuous to not talk about them. Here, of all places. Where I’ve purposely carved a space.

So here goes.

I had a bad weekend. It kicked off Friday, when about an hour before I was supposed to leave, I was asked to provide information in the aid of making people unhappy, basically a sort of “we have to take some toys away from our kids, which ones?” and I know that it’s just going to make things harder and everyone’s already stressed out. There is literally nothing I can do about this, and while realistically I know it’s not up to me to be the Morale Champ of our group, most of the time I feel like it is. So when things are stressful and I can’t fix it, I get unhappy. I have a very limited power, and I use that power beyond what I probably should to keep things together, but it’s worth it to me if I can help my coworkers feel less shitty about their jobs, because I like them.

I’ve been watching my job take things away and make things worse, and it’s the nature of business, I totally get that, but it is supremely frustrating to see things happen and know that it didn’t used to be like this. And so I fell in to a sort of employment despair, because I can’t see things getting any better at all. And in that dark space, I reverted back to the thought that I STILL don’t know the origin of, “one more year. You just have to put up with this for one more year.” And my brain seized on that and began planning my exit and I completely freaked out, both because massive life change and holy shit could I afford this, but also a sort of egotistical WHAT THE FUCK ARE THESE GUYS GOING TO DO WITHOUT ME. If I leave, the smallest, stupidest things will cease to be, things that don’t mean much but make their lives easier. Like a goddamned supply cabinet. We’re supposed to fill out a form on a web tool when we need office supplies, but I deemed that Way Too Fucking Stupid and spent a couple hundred bucks outfitting us with a goddamned supply cabinet so that you can get a fucking PEN when you need one instead of filling out a form and waiting for an intern to bring you one. If I leave, no one is going to maintain that cabinet.

It’s all stupid shit, but it was my first moment of “holy shit my absence is going to cause problems for someone when this disease takes over”. There’s an intellectual exercise in “what would happen if I leave” that I think everyone indulges in, and to a revengey sort of degree when it’s to do with stressful relationships or jobs and we imagine how screwed they’d be if we just walked out; but this was a for-real, scary, “I am going to be gone and my void is going to cause someone genuine discomfort.” And it hit me kind of hard. And my brain, of course, spun in to the nightmare world of trying to plan financial escapes and mentally going over all of the homework I still have to do and…..

My brain still in this space, I went to game night with some coworkers, and that was awesome! Except when filling out a character sheet, and my hands just..wouldn’t work. I have very good penmanship when I take the care to do so. I have been complimented on my ability to write legibly on white boards. I’ve noticed some decline there, but that night I could barely read my own writing. And it sat in my gut and festered, and when I got home that night, I probably should have allowed myself to cry it out, but I tried to medicate it away instead. And that led to a whole weekend of moping and sadness instead of one night of crying jag catharsis.

I laid in bed and my cats sat on me and it was hard to move them off of me, and that made me sad.

I thought about the special pen and ink I got in New Orleans to write my goodbye letters and now I’ve waited too long to do that, and that made me sad.

I looked around my kitchen and the drawers of baking things and knew I’d never bake to the level of professionalism I wanted, and that made me sad.

I read Facebook and found out that my friend with cancer is taking a downturn, and I was sad.

I watched a new series that people were excited about and I just couldn’t get into it, and that made me sad.

Fun plans were canceled for Sunday morning and I just didn’t have the energy to do something else instead, and that made me sad.

A friend with MS reached out to be in a bad space, and I provided what comfort I could, and her pain and anger made me sad.

My cat barfed in the hallway, and I just…couldn’t get up to deal with it that moment, and that inertia made me sad.

It’s lifting now, it’s still there around the edges, but it will fade, it always does. But I need to be honest with myself when I get sad, and I need to give myself permission to mourn, and I should probably find a space to talk about this with someone who gets it but isn’t my therapist, but all of the ALS forums are just so AWFUL, one part “MY LIFE IS THE TERRIBLEST AND YOU DON’T UNDERSTAND AND HERE IS MY LITANY OF WOES” competition and one part “We sadly announce that our member Whassisface died this morning.” Neither is helpful. Cause sometimes it ISN’T terriblest, and I’m going to die, but not today. And sometimes you just need to say “This sucks” and have someone say, “Yeah I know” who really DOES. And then lie and say it’s going to be okay, even though it isn’t.

I’m learning a lot of things. I’m learning to let myself be helped. I am training myself out of assuming that when I accept that help, it is a burden to someone else. I’m learning to let myself be weak. I’m learning to give myself permission to breathe in the in-between times without becoming a lazy depressed lump. And I’m learning to let myself grieve for myself. They’re all hard lessons, things I’ve trained myself out of over a lifetime of only ever being able to count on myself. It’s hard to be vulnerable. And it’s hard to put these things here, it’s so much easier when it’s energetic anger or joy.

But for now, I’m a bit depressed. It’s okay. It’s understandable. And allowed. But it’s hard to be. I want to be my usual bouncy optimistic self, and she’s still around here somewhere, but she’s taking her sweet time coming back around.

So, sorry it’s been so long. I’ve been quiet and I shouldn’t be.

I think of you a lot, though. And I miss you.

Rainbows and Rememberances

It’s been an introspective week, monitoring my stress levels and emotional energy and seeing where I’m at, really. Looking at that last entry, I’m baffled at the strength of my rage over that image. It’s certainly infuriating, and something I feel very strongly about, but the instant passion of my anger isn’t something that’s happened before. Looking at it now, it angers me, but it’s nowhere near the level of pissing me off that it was before. I don’t fully understand why it affected me so strongly, so instantly, and so darkly.

Something for my therapist and I to work on.

Today I found a link on my Facebook feed to a blog post about my friend with ALS who chose to end her life. It is a photographer who connected with her and documented the end of her life, the days leading up to and the actual end. Llewellyn Gannon’s photographs are beautiful, personal, and intimate. Her story gave me closure I didn’t have before, to know exactly how things happened, something more than a final farewell post from my friend on Facebook.

She chose to die surrounded by her loved ones on a beautiful April afternoon. I can’t think of a better way to tell her story, and to show why Death with Dignity is so important, than Llewellyn already has with her pictures and her words. So I will simply link it here, and warn you that there is death, and beauty, and nakedness, and fragility, and love, and power in these images. Proceed with an open heart.

http://www.llewellyngannon.com/she-had-the-right-to-die-1/

Thank you, Sherrie, for showing me the way, and thank you, Llewellyn, for your art and your love and your generosity.

Betrayal

I’m not sure it’s possible to put into words how it feels when your own body betrays you. It’s like Lemony Snicket said about the loss of a loved one: “‘If you have ever lost a loved one, then you know exactly how it feels. And if you have not, then you cannot possibly imagine it.” If you’ve had your body just stop working the way it ought, you know how it feels. And if you haven’t? You can’t possibly imagine it. I can’t properly convey the complicated feelings it invokes. But it’s not gonna stop me from trying.

So.

Falling down.

I’m becoming good at it. By which I mean, I haven’t broken anything yet!

They come with no warning. There’s no preparing, there’s no prevention except possibly living in a bubble and/or strapping in to a wheelchair already/never doing anything ever. One leg or another just suddenly says NOPE and then I’m on the ground. It happened today while I was walking to the title office to sign over my house. I was walking slowly, I had my cane, I was watching for uneven sidewalks, but I was just …on the ground suddenly. There is a split second of OH SHIT I AM ABOUT TO FALL and then gravity. There’s nothing you can do about it. I scraped my knee a bit, wrenched my ankle a little because it’s a whiny bitch that can’t do its job right, and roughed up my palm, but it didn’t really hurt. I managed, in my wobbly goose ascent, to mostly land on my butt. There were no witnesses.

The WORST part was trying to get the hell back up. The cane was mostly useless, I need two hands to haul myself up anymore. I gave it a couple tries, like a newborn deer trying its legs out for the first time, but SCREW those little baby deer, man, they got FOUR legs and I only got two that don’t work. I sat/knelt on the sidewalk for a minute, surveying my surroundings, trying to figure out how I was gonna do this. To my left, shrubbery and then a little steel fence. The fence is perfect, but the shrubbery is an obstacle. To my right, freshly watered grass and a tree. I sacrificed my clean pants and opted for the slightly muddy track to the tree. Kneeling in the dirt, I planted my heels against the sidewalk and kinda pushed myself up against the tree. Once I got back to my feet, I was fine.

There wasn’t a lot of angst involved in the process. Just quick thinking and scheming and logistics. The thinking/feeling comes AFTER I’ve solved the immediate problem. And my thought process was almost entirely:

WHAT THE SHITTING FUCK, BODY?! I THOUGHT WE WERE A GODDAMNED TEAM. WHAT IS THIS RANDOMLY DROPPING MY ASS ON TO THE SIDEWALK BULLSHIT?! DO YOU WANT ICE CREAM? ARE YOU BLACKMAILING ME FOR ICE CREAM? WELL GUESS WHAT, SHITHEAD, WE GOTTA WALK TO THE STORE FOR THAT. AND THAT MEANS NOT DROPPING US ON THE SIDEWALK FOR NO FUCKING REASON.

I’m trying, I really am, my body says back. It’s just hard. Everything is so much harder than it used to be.

YEAH OKAY I GIVE YOU THAT I MEAN FUCK WE ARE SWEATING BUCKETS HERE FROM JUST WALKING TWO BLOCKS EVEN IF IT WASN’T ASININELY HOT OUT ALREADY. BUT FUCK, MAN, COULDN’T YOU HAVE DROPPED US SOMEWHERE I COULD GET UP WITHOUT GETTING OUR PANTS MUDDY?

You have as much warning as I do. I’m sorry. The last few weeks have been rough, maybe we could take it easier for a little bit?

WELL SURE I WOULD REALLY LIKE THAT, BUT WE HAVE TO DO THIS ONE THING TODAY. WE HAVE TO DO THIS AND THEN WE WILL BE DONE WITH THE HOUSE WITH THE STAIRS FOREVER.

…Ugh. Stairs. I’m so glad we’re done with those.

WORD. AND ANYWAY DIDN’T WE GET LIKE, ALLLLLL THE SLEEP ON MONDAY?

We did? But I don’t feel rested at all. You’ll have to take that up with Brain.

hey look dudes it’s been a rough coupla weeks a’ight i’m having a hard time dealing with all this at once so maybe just back off okay

WELL NO SHIT IT’S BEEN ROUGH, YOU WON’T SHUT UP. IF YOU’D JUST LET US GET THROUGH THIS STUFF MAYBE WE COULD NOT SUCK SO BAD AT LIFE AND FALL AND SHIT.

Yeah!

hey fuck you body you’re the problem in the first place you know if you weren’t killing us all by deciding to shut down then there would be no stress over house sales and we would not have fallen probably i’m just saying and we could stay in the zombie tramp house cause we like that place but no you can’t even get up the stairs without sweating like a little bitch

SHE HAS A POINT.

Fuck you both, alright? Can we just get to the signing so we can get on with the day?

WELL I DON’T KNOW, BODY. THAT IS KIND OF UP TO YOU.

Oh. Right.

hahah fuck you loser

OKAY LET’S DO THIS, OKAY. AND BODY, MAYBE YOU CAN STOP DUMPING US ON THE SIDEWALKS SO MUCH.

not to be a dick or anything but maybe we should get an actual walker so if this happens again we can get up off the ground easier and maybe it won’t happen so much cause we’ll be more stable and stuff

…YEAH. YOU’RE PROBABLY RIGHT. FUCK. WELL LET’S JUST GET THROUGH THIS SIGNING OKAY AND THEN WE CAN DEAL WITH THAT.

ok man whatever hey body you ready to do this shit

Yeah. Hey, sorry. I mean…I really am trying. But everything’s so much harder, you know? I’m sorry this sucks so bad. I’m trying.

YEAH. I KNOW. I’M SORRY FOR YELLING..I MEAN, I’m sorry for yelling. We’ve been dealt a shit hand and I need to be nicer to you. I’m sorry. We’ll get through this. I know you don’t mean to be unreliable. I mean, you’re what gets bruised and scraped up after all. I just get embarrassed.

and you know uh also reminded that we’re gonna die sooner than later in a pretty shitty way but maybe that’s just me cause i mean a fall is a pretty clear indicator of decline and stuff but hey

Okay yeah, that too, but that comes later. Usually. But of course now that you’ve brought it up. Fuck. Yeah. I guess I am falling more, lately. They’ve already asked if I want a chair but I ..I just don’t think I’m ready for it, I mean I thought I was getting around okay and so far nothing really bad has happened when we fell, besides freaking out bystanders.

…dick move, brain.

just saying

We hate that phrase, brain, and you know it. It makes us sound like a complete tool. You could replace ‘just saying’ with ‘I’m an asshole’ and still convey the exact same message.

Okay, you two. Fuck it. Let’s go sign away our dream house.

Ok. I’ll get us there. Just go slow.

hey though seriously you know we’re gonna be a’ight though, right cause i mean we’re doing good all things considered and we have peeps at our back and it’s gonna be okay

Yeah. I know. This sale happened quickly, for much more than we thought we’d get, we had so so many friends show up to help, and Justin did all the post work so we didn’t have to. Seriously we’re pretty goddamned lucky, all things considered. Let’s go sign some paperwork.

Can we get ice cream afterwards?

fuck yeah ice cream

Hell yes we can. Let’s do this shit.

Noise

When I was younger and cooler and far more existentially miserable, I wore soft leather boots and flowing skirts and metal belts with chains and coins and bells that made a lot of noise. Not so many as my friend Bascha – you could hear her coming a mile away. But the chains around my waist and the handcuffs through the epaulets on my jacket and the many metal bracelets around my wrists and the key earring clanging against the rest of the rings told you I was around. I loved the weight around my hips like a hug, the bright glint of the lights catching everywhere. And when I danced, I’m sure they all made a wonderful clatter. I delighted in jogging down the stairs, listening to the pinging and the rattling sounds that I made.

Hi, I’m Strange, listen to my wonderful assortment of spanglery. I don’t actually want to be noticed, so much, I don’t want to have to interact with you, but I want you to be aware that I’m here, with my jangling cacophony of industrial noise. I had my own joyous soundtrack of chains and bits and keys and bells, shaking rhythmically to my own walk. I don’t march to a different beat, I am the drummer*.

I have a new soundtrack now, a more subtle one. I have new shoes and they make a lot of noise, because they’re not broken in yet. Creak-creak-creak of the fake leather. It goes with the skrtch skrtch scrtch of the Velcro on my braces. And the soft click, click, click of the cane. And the near constant ‘ahrm’ clearing of my throat due to whatever medication is causing that. It’s not such a joyful soundtrack, but it is my noise nonetheless. A song of medicine instead of industry.

Necessity drives this noise instead of a penchant for collecting shining metal bits, and the undertone is the same. I don’t want to be gawked at but I want you to be aware that I’m here, please don’t back in to me. This isn’t music I chose, but it’s not a bad one. I’m glad it’s not accentuated by the rustling of adult diapers or the scree scree scree of dragging an IV stand around. And not the vshhh vshhh vshh of assisted breathing. Not yet.

I am not so young. Not so cool. Not nearly so miserable, despite it all, and I wonder what my younger, noisier self would have thought about that. She’d be crushed we can’t dance anymore. She’d be confused why I’m so much more content than she is, all things considered. And I’d show her the support these medical noises bring, and the emotional support the medical need has brought, and I think she’d agree I have it better of the two of us.

It isn’t stopping me from thinking about buying a chain belt, though.

*All credit for that line goes to my dear friend Linnea, who uttered that bit of brilliance as we sat in my room as malcontented freaklet teens. I don’t think she ever knew how much that phrase inspired me and cemented my complete adoration of her.

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.

He, She, Me.

He:

A few weeks ago, a few very short weeks, a friend posted something in her facebook along the lines of “our routine doctor appointment turned into a little bit more. He’s being admitted right now, but please don’t worry!”

…and I worried.

She’s like me. Bubbly, happy, all about best possible outcomes, optimism, and smiles. She’s a joy to be around. He’s a sardonic, sarcastic, clever man who used to be my boss. You know he’s awesome if he used to be the boss of me and we STILL talk. He’s snarky and hilarious. They’re both a pair of my favorite people. Still can’t believe they hooked up, much less got married, but they’re fucking perfect for each other and I’m really glad they did. I love them to pieces.

So when she, bubbly, optimistic She, didn’t SAY what had gone awry, I knew it wasn’t good. And then I was invited to a support/information group created in facebook, to keep in touch with what was happening and how we could all help. And then, scary words eventually saw the light of day. Cancer. Stage 4. Scant months to live. Maybe more if chemo works.

And just like that, their lives were over as they knew it. And just like that, the floor dropped away from all of us who knew and loved them.

I can’t even pretend to say I know what it’s like to be told you have a short and definite lifespan. I know how it was for me, how it continues to be, but I can’t even fathom what he’s going through. His time is so much shorter than mine, his notice so much more sudden. He has a wife. And while they’re publicly taking it with grace, no one knows what’s going on inside. Some aspects I can guess at; the panic of Time suddenly a companion, yelling at you about all the things you have to do before you go. The complete bafflement of, how did this happen. Is there something I could have done? But then there’s also the chemo – unlike my timeline, there’s a chance for an extended cut, but only if you can withstand it. And now they have to decide quality of life vs. quantity. And I know that mental argument very well.

There’s absolutely nothing I can do but stand by and love them, and listen, and hold space. And when they make decisions, honor them. Be there as much as they will allow me to be. And then let him go.

It’s the only thing within my power.

She

I wrote about her awhile ago. She was suffering from bulbar onset ALS, and she gave me the chance to figure out and to talk about how I feel about assisted suicide. And she gave me the courage to tell all of you, and start that difficult conversation. It’s a really hard thing, to tell everyone that you are probably going to take your own life and they’re going to have to forgive and be okay with it. She did it with perfect grace.

She had been fighting the Boss Fight of ALS for awhile. Her decline was fast. I only knew her through facebook posts, and it seemed like daily there was another struggle, another development. But she faced it with so much fucking GRACE, and smiles, and gratitude. Her posts weren’t about how she’d never live to see her son grow up, they were about the daily joy she found in his company and the treasure trove of memories she was building for him. Her posts weren’t about her medical suffering, they were about the gratitude for the people who helped her through it all. Look for the rainbows, she says constantly.

April 4th, she had fought enough. She left a goodbye, and a video for her son, and the last words, “Enjoy. I have.”

And then she let go. And so I, too, let her go.

Me:

I’m losing strength in my hands.

I’ve been noticing maybe a month or two now, but I’ve been in complete and total denial. The mailbox lock has ALWAYS been hard, it’s just a bit more difficult to turn the key; must have frozen or something. The lid to the cup is way more difficult to pry off because it’s new. Cutting a piece of steak cramps up my hands, but hey, it’s just cramps. I had AGES before my foot strength was lost after the cramps started, right? My hands are shaking while holding my laptop because I’m just tired. The word of the day and things that I write up on my whiteboard every day just SEEM a little shakier. But I’m sure it’s nothing. Right?

Friday, April 4th, I fell. For no reason. It was the first time that happened; I wasn’t tripping on anything or trying to maneuver, I just…fell. And wrenched my ankle. And felt very sorry for myself and frustrated. And so I told Dr. Goslin this, on Thursday during my appointment. And she confirmed I’m losing strength in my hips.

…And I said I think I might be losing strength in my hands. She did the usual tests. And proved that I am.

I was absolutely right in that this? This is a trigger. This is panic and terror and the beginning of the end. And this makes everything so much worse. My timelines have shifted, and things I thought I had some time to do, I suddenly don’t. I have to write the letters while my handwriting is still stable. I have to do all the things I can’t, soon. And I’m freaking the fuck out. Because I don’t know what else to do but scream.

She asked if I’d like to borrow a motorized wheelchair to see how it works out. And internally I flipped the fuck out because I am NOT ready for that. No way no how. But outwardly I politely declined and said I’d like to wait awhile before going down that road. She agreed that I have a lot more time of mobility left, so there’s no rush. But it’s coming. Danielle suggested one of those old-people jar opening assist things. And I panicked a little but kept it in. I said maybe a walker, but not a wheelchair. Not yet. But my hands are going to have to be accommodated for.

After the appointment we went to the store to get some meds and some air fresheners for the empty rooms in my house that I’m clearing out for sale. And I couldn’t get the fucking tops of them off. I had to use my teeth. I still have dexterity, but my strength is going. And so, too, are all of the things I thought I could do to keep the loss of mobility tolerable. For now I can still type. I can still play video games. But I thought I had so much more time before I had to think about the end of those things. To a time when I can’t use chopsticks, to when I can’t pull myself out of bed, to when I can’t dress myself.

And it scares the motherfucking SHIT out of me.

I’ll get accustomed to the changes as they come. I’ll persevere. But I feel like this is kind of when I really start to die. No mobility? Whatever, that’s okay. Seriously. It sucks, but a wheelchair isn’t that bad. This is a hardship, but not the end. When I am no longer able to draw stupid pictures, no longer able to frost a cupcake, no longer able to chat, no longer able to launch Skyrim…that is the death of me. When I am no longer able to even fucking pet my cats. That begins the days of the useless shell that I become. I wonder if I’ll want to go get the prescription the day I drop something for no reason. I won’t use it yet, but I wonder if that’s going to be the preflight check. When I will start thinking seriously about the endgame.

And I don’t know if I’ll have the strength to let go, when all I feel like doing is trying to hold on.

And I’m really, really scared.

Vocabulary

In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*

MY WORDZ, LET ME SHOW YOU IT:

Godzilla Disorder/Disease
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”

Get-Ups
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.

General Vocabulary, reporting for duty, SIR!

Silk Circle
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.

Spoons

The Spoon Theory written by Christine Miserandino


This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”

Also? she totally stole a spoon from that cafe.

Holding Space

What it means to “hold space” for people, plus eight tips on how to do it well


This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.

There are certain to be words to come. There are always new things. New swear words, if nothing else.

And we’re back.

Yesterday was a bit of a tail-end meehhhhh day but today we are back to our regularly scheduled optimism. Things seem a lot more manageable today. I also have an appointment with my shrinkologist, and I intend to ask him about coping methods. Bad days don’t happen often, but when they do, I’d like more in my toolbox than “take an ativan and go to bed”. Sleep is indeed a panacea in my world, but it’s an inconvenient cure when there’s work to be done.

My main babe Danielle and I have plans to meet with the aforementioned friends for a night of talks and Cards Against Humanity. I intend to show off my “I’m Dying” cards. I have a coupon for 250 free business cards, I think I’ll print some up, wallet sized. And I can carry them around easier (though I LOVE LOVE LOVE the ones Megan sent me and have those in my purse at all times) and divvy them up to my similarly dying friend. I think he’d appreciate them.

What else. I got an awesome new cane! It’s clear plastic and hollow so you can put things inside! But it’s heavier than I thought it’d be, so filling it with things like candy or gaming dice might not be viable. Boo. And a little short. I will have to figure out how to fix that. And then I will have the nerdiest cane EVER.

OH! And I have to tell you about the pulmonologist. That’s it’s own post.

So there.

Bad Days

I’m having a bad day.

Some days are fine, some days are normal, and some days it all just fucking gets to me.

I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..

FUCK.

And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.

No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.

And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.

I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.

Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.

I hate bad days.

“It’s a beastly, undignified business.”

Terry Pratchett died yesterday. He was 66 and suffering from early onset Alzheimer’s disease. He was a brilliant mind, and the world is so much poorer for his absence.

In 2011, three years after his diagnosis, he made a film called Choosing to Die. He met with an extremely British man, Peter Smedley, who had motor neurone disease – known here in the States as ALS. Peter was about the same stage as I am when he chose to die, weakness in his legs that made it difficult to walk and get up out of chairs. He had a very bright mind, and saw clearly the end of his path. He didn’t want his story to end that way, so he went to Switzerland and wrote his own exit. His wife was immaculate and also extremely British and very “keep calm and carry on”. They both kept a very strong face through it all.

I did not expect to actually see the man die.

I am glad they filmed it. It was a very good and honest look at the mechanics of the assisted death. And even though it was hard to watch, I am grateful that he shared his story. It was surreal to see someone at the same stage as I, with the same mindset, take the steps. Earlier than I would ever have. So much earlier. But he knew where he was going and did not want that undignified end, and so he took the poison and his wife stroked his hand and he fell asleep and died.

And he had to go to Switzerland to do it.

I am so, so grateful, again, to live in a state where it’s legal. How anyone can deny someone the right to die comfortably in their own homes on their own terms is quite beyond me.

It is, indeed, a beastly, undignified business.