Answers!

September 15, 2014September 15, 2014 tragerstreitLeave a comment

So I opened the floor to questions, and I got a couple. I hope you guys know you can always ask me questions and I’ll try to answer them as honestly as I can. The usual disclaimers apply – I speak for myself, not for everyone with ALS, your mileage may vary. Hit me up in comments (anonymously if you like) if you can think of anything else you’d like answers to.

Q. How does progression work? Random parts or a clear path with variable timeframe?

Everyone’s experience with ALS is different. Though according to Dr. Goslin, the rate of progression tends to be steady. If it’s a fast progression now, you can expect a rapid decline until the end. If it’s slow and steady (as mine is) it will remain that way. ALS doesn’t go in fits and starts, apparently – it’s a constant rate. I’m losing the ability to walk, but it’s not as though one day I’m going to wake up and my legs just don’t work. They’re going to fizzle out slowly.

Some people start with the speaking/swallowing difficulties, some people’s starts in the hands, some peoples’ start in the hands and feet at the same time. Some people die within months of learning something’s wrong, some people go for years before being diagnosed because they just figure they’re clumsy or getting old. This is the main reason I can’t speak for everyone with ALS. Our feelings and how we deal with the disease are incredibly varied, but nothing so varied as how the disease manifests in the first place. It’s entirely unpredictable except in how the story ends.

Q. Does it hurt? Not trying to do things but just in general?

The disease itself doesn’t hurt at all. That’s one of the things I was actually lamenting during my diagnosis – nothing hurt, so I couldn’t point to any one thing as the problem. The only pain that ever came as a result of ALS were the occasional muscle cramps in my legs, but they’re rare now that I’m taking neurontin to calm the twitches. Kneeling now hurts because there’s no longer that cushion of muscle protecting me – so my bones are pretty much pinching my skin against the floor. ow. But no, nothing hurts as a direct result of the disease. I don’t feel the neurons burning out. My only clue that it’s happening are the random fasciculations and the progressing weakness.

Q. I know you’re Christian – how does that affect your thoughts? Does it give you something to hold onto or is your faith shaken?

H’oboy. Well. I’ve always considered myself Christian in that I believe in the teachings of Christ. It boils down to – Be Kind. Take care of those who can’t take care of themselves. Believe that you, too, will be cared for. Every major religion has some variant of the Golden Rule. I was raised hardcore Evangelical Christian, and I still hold a lot of the same faith, but I don’t believe in the Bible as a literal record of events, and ..yeah. It’s complicated, and changing. I believe in God, but I don’t believe He’s necessarily involved in the minutiae of our lives. I really don’t believe He cares who we’re having sex with. I believe it is in us to be kind and rise above our animal nature, and that brings us closer to Christ, closer to being like God.

My faith (or whatever it is you want to call this) is unshaken, because I don’t think God was necessarily involved any more than God is involved in the changing of the leaves in Fall. I don’t believe that God will fix this except through the minds of brilliant scientists who will figure out a cure. I think things happen for a reason, but sometimes that reason is that you’re stupid and have made terrible life choices. And sometimes that reason is that your DNA is twisted and you were doomed from the get-go. I have ALS for a reason, and that reason is ..whatever it is that causes ALS. I don’t think I was given this disease as a challenge of faith or a chance to show grace, I think it just happened because sometimes people get ALS. We’ll figure out why some day. I’m not going to wake up magically free of ALS, and that’s okay. It’s not God’s fault. It’s not anyone’s. It’s just how the universe manifests itself.

Though I admit, I WAS cursing the universe a bit when I got shingles on top of all of this. Just a little. Cause…dang, man. Really?

Q. Are there really neat treatments upcoming that hold out some hope?

Stem cell research is going to be the key. If we fix this at all, it’s going to be through stem cell research. It’s what shows the most promise. Recent tests have allowed some early-stage ALS patients to recover a little bit of strength. And while some of that is controversial (spoiler alert: not all stem cell research involves embryos), I also believe that if the naysayers were diagnosed with ALS tomorrow, they’d probably be willing to inject fetuses straight into their spinal column if they thought it would keep them alive.

I don’t think we’ll find a cure in my lifetime – no, that’s not entirely true. We might find a cure in my lifetime, but it will never get through the FDA rigmarole in time to reach me before I die. My only hope is through participating in clinical trials, which will carry some risk, but even if that kills me, it provides a data point. Which is precious. And I really do believe we’ll figure this out. Some day ALS won’t be a death sentence, but I don’t think there’s any chance of that happening with me. And that’s okay. We’re working on it, it’s getting attention.

Q. What are your happy thoughts?

I am loved. Seriously. I am so fucking loved. It’s amazing. I would NEVER have thought in my whole life that I had this many people who cared so deeply for me. Any time this stuff gets to me, I can make myself calm down with the knowledge that there are people who would do anything to help me.

It’s a powerful thing, to know you’re not alone. And I know there are going to be days when that knowledge saves my life.

Falling with Grace

September 9, 2014 tragerstreitLeave a comment

I went out to get the mail yesterday after work, and waited for traffic to cross the street. My street’s the only one in the neighborhood that goes all the way through from one major road to another, so it’s busy. Coast is clear, I step off the curb, but here comes a truck. He’s waiting for me, how nice! But the other side is not clear, and it looks like there’s a few cars, so I don’t want the truck to wait for no reason. I think that I will signal to the truck driver that I intend to wait for traffic by stepping back on to the curb.

Except that doesn’t go so well.

Instead, I don’t have the strength in my legs to make that step back, and so I wind up on my ass on the curb in some very crunchy grass. My neighbors don’t water their lawn any more than I do. I’m not hurt at all, just embarrassed, and I laugh nervously, shake my head, and flash the truck driver a thumbs up. Like, hooray for that! ha ha ha I just fell that’s so funny. But I’m okay! He laughs, and drives away.

I wait for traffic to clear to try to stand up. It takes me a try or two.

And I’m not going to lie, when I got back in to the house, I cried. And felt an irrational anger at the truck driver, even though I know if he had understood why I just fell, he wouldn’t think it was funny at all. And I was laughing, too, and he has no idea that it’s a nervous habit I’ve had all my life. When I’m angry, I laugh, and then I cry. When I’m hurt, I laugh. When I’m being insulted, I smile. Until I’m alone. And then I cry. But still I’m a little angry that he didn’t understand it wasn’t my fault I fell. It wasn’t clumsiness. It wasn’t. fucking. funny.

This is the fourth fall. It’s not the worst. The worst one, thankfully, didn’t have any witnesses and was just scraped up palms. It was the day of my diagnosis and my mind was elsewhere so it’s hardly surprising I didn’t quite make the curb. They’ve all been the result of trying to step up and not quite making it, and then not having the strength to correct my balance. So I just kind of sit down. Or kneel. I’ve never been actually hurt, they’re gentle falls.

But they’re a precursor of things to come. A sign that things are going to get worse. Hateful little reminders that my time on my own two feet is limited. The fall itself is frustrating, of course, and humiliating, but they echo of disability and impending loss. There’s no outward injury, just a cringing inside and fear and future loss.

There will be more. Worse ones, too, I wager. And in public, I’ll fall with grace and good humor, and joke about it, and feel like dying just a little, and never let on that I’m not actually okay.

“Nothing bruised but my ego,” I joke. But that bruise hurts like hell.

Kiss Me, I’m Dying

September 5, 2014September 5, 2014 tragerstreit5 Comments

One of my very favorite, most used bits of gallows humor is the idea that the world somehow owes me something because of my disease. I call this the “Fuck It, I’m Dying” defense.

…Of course I don’t actually BELIEVE that, that would be stupid. Even though I know there are some terminal patients who do think that way, it makes absolutely no sense and that’s a ridiculous way to think. I present you my very very favorite poem ever:

A Man Said to the Universe
BY STEPHEN CRANE

A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”

POW. The world don’t owe you JACK SHIT, my friend, if you’re dying today or tomorrow or a hundred years from now. But it’s funny to think so.

Any time I think I might get in a little trouble at work, like I forgot to submit my monthly status report (OH MY GOD I TOTALLY FORGOT TO SUBMIT MY MONTHLY STATUS REPORT! SHIT!) my friend and coworker asks, “What are they going to do, fire a dying woman?” When we don’t choose where I wanted to go to eat, “Demand it anyway. You’re dying. OVERRULED. We’re gonna go get Mexican, bitches.”

I was talking tonight with my dearest Megan (who is awesome and you should BE so lucky to know her) about traveling for business, and sourpuss coworkers who just want to go to the hotel after work and not explore the city. Especially if you’re in another country! COME ON MAN, LET’S GO HAVE AN ADVENTURE. Megan agreed, “Yay, adventure! Demand adventure. Play the I’M DYING YOU HAVE TO TAKE ME ON AN ADVENTURE card.” I told her, “I LOVE that card!”

And then she said, “Okay, now I want to make you cards. Two-sided, business card, or maybe a little bigger, like an old fashioned calling card…One side: I’M DYING. Other side: miscellaneous demands.”

I’M DYING…

I DEMAND CAKE.
I DEMAND SEX.
I DEMAND KITTENS.
I DEMAND ADVENTURE.
I DEMAND FREE STUFF
YOU HAVE TO FORFEIT THIS ARGUMENT
TELL ME I’M PRETTY
BUY ME SOMETHING
CARRY MY SHIT
CARRY ME

I’m sure you all can help me think of other good ones. Let’s hear them.

Talking the Talk

August 28, 2014 tragerstreit2 Comments

I had the second talk today, for Intel employees. I mentioned the talks briefly before, but lemme recap.

The leader of the Veterans’ Resource Group here where I work contacted me to see if I’d be willing to help. Veterans are twice as likely to get ALS and we don’t know why yet, so they’ve dedicated this quarter to raising awareness. Part of that awareness campaign was two scheduled events where they brought out the technology available to assist ALS patients, tried to drum up support for the Walk to Defeat ALS, and talked about ALS in general. He asked if I’d be willing to just give a short talk about my diagnosis, how it came to be, and how technology has come into play. I came to his attention because of the news story on voice banking, and he thought that was a wonderful way to introduce ALS to Intel folks – apparently I am the only Intel employee currently working, who has ALS. He asked if I’d share my story. Of course I said yes, no big deal.

I thought a lot about what to say. I didn’t want to just stand up there and talk about my diagnosis. I didn’t even really want to talk about myself much, except to say, this is what ALS is, and if you have any questions at all about what it’s like, or how you get diagnosed, or anything, please ask, because I want people to know this stuff. There’s a lot of misinformation out there, and most of the information that is correct is cold and clinical, hard to put a face on. And I didn’t want to be a Sally Struthers pity party campaign of DON’T YOU FEEL AWFUL LOOK AT THIS HORRIBLE STUFF YOU SHOULD GIVE US MONEY AND FEEL BAD.

And so instead I talked about the tech. Both times, I didn’t manage to stay on script, but this is more or less what I said. And I wanted to share it here, because it’s valid and important to me.

After a 6 month chase including MRIs, a spinal tap, a biopsy, and several impressions of an electric voodoo doll, I was finally diagnosed with ALS. (As it was stated) ALS is also called Lou Gehrig’s disease, after a then-famous baseball player gave a speech telling America that he considered himself the luckiest man alive.

That April 1st, as I sat in the neurologists office and tried to process the news, the first thought in my head was not that I felt particularly lucky. The first thought was actually, “I have to wait until tomorrow to tell people, because NO ONE is going to believe me when I call them on April Fools’ Day to tell them I have a terminal disease.” And my second thought was, “Ok, now what.”

Some people interpret this as courage; I think it’s actually closer to pragmatism. If anything, working here has honed my natural ability to deal with crises with grace. I *can’t* panic; I’ve suddenly lost the luxury of time, and in less than a year I went from perfectly healthy to planning advance directives and making decisions about feeding tubes and ventilators. And it’s become a full time job figuring out how the heck am I going to AFFORD all of this. Dying of ALS is a very expensive endeavor in the States. There’s all of the mobility equipment I’m going to eventually need, there’s the two story house I had bought a handful of months before I was diagnosed that now has to be sold because stairs are becoming impossible. There’s going to be hospice care, and figuring out who I can rely on to get me to medical appointments.

And even more stressful that figuring out money, I have to tell a lot of people about my diagnosis. When a coworker asks if I’m limping because I’ve hurt myself, I have to tell them why I’m limping, and I find more often than not that it usually entails an explanation of what ALS even IS. When I told people of my diagnosis, while their first reaction is always “I’m sorry” – which feels lame to you? But it helps, it really, truly does – the SECOND thing out of everyone’s mouth is always some variant of: “What can I do to help.” I have never realized how many amazing people are in my life. When I was diagnosed, I knew I’d need someone to lead my care team when I couldn’t, and when I looked up, my best friend had her bags already packed and checklists in hand. When I realized that it’s become so much more difficult to do the simplest things like go to the store, I have a plethora of people offering to take me. My little brother moved his entire family from California to be here for me. Casual acquaintances have become friends. And my coworkers have become my invaluable allies.

I have the very good fortune to be working here at Intel. Our benefits are actually really good, especially when you compare them to the nightmare that is Medicaid. And most importantly? The people I work with are an incredible asset. You have two things we really need if we’re going to defeat this stupid disease. First? I’ll be honest, …we need your money. Research takes money to fund, and did I mention how expensive having ALS is? But second, and probably most importantly, you have intelligence and innovation. If you look at the tech available to make living with ALS easier, and compare it to what is POSSIBLE, you’ll see an almost comical shortfall. Eye gaze tech allows ALS patients to use a computer after their ability to move has gone, but it costs thousands and thousands of dollars, and the best stuff isn’t covered under insurance. There is good technology available, and there’s AMAZING technology POSSIBLE. And you’re just the people to help us push this tech to the next generation and make it available to everyone that needs it, not just those that can afford it.

Ever since that April diagnosis I have been shown time and again that I am completely surrounded by people who are willing and able to make this disease suck less – for myself and every other person with ALS.

And because of that, I realize that I am actually very, very lucky.

INTERNET uses ICE BUCKET CHALLENGE! It’s SUPER EFFECTIVE!

August 19, 2014August 19, 2014 tragerstreit3 Comments

(edit: Oh my dear, precious, sweet sensitive children. How ANGRY you all are. I didn’t write this in perfect seriousness, which I would HOPE was obvious (hyperbole is fun and mental! It’s fundamental!) but I also don’t expect to actually convert anyone to the cause with it. I don’t use gentle, persuasive tones in this piece because I’m not trying to be gentle or persuasive. It’s not a rally, it’s a rant.)

Seriously, world, why all the hate?

I realize that humans are hateful, spiteful creatures and will find a reason to hate on even the most innocuous things.

Awww a sweet boy-meets-girl love story! WHERE IS THE REPRESENTATION FOR THE GAY COMMUNITY!? Uh. Okay. Here’s a sweet boy-meets-boy love story then! WHY ARE YOU SO GENDER BINARIST? HUH? Okay…here’s a ..person meets person love story? WHERE ARE THE PEOPLE OF COLOR AND THE DIFFERENTLY ABLED CHARACTERS? Well I only wrote this with two people total… OH SO YOU ARE BIASED AGAINST POLYAMORY HUH? AND WHAT ABOUT THE ASEXUALS? THIS IS VERY OFFENSIVE.

Seriously, people, calm yo tits.

YOU ARE ASSUMING I AM FEMALE. I AM OFFENDED.

No I’m assuming you’re a bitch.

THAT IS INCREDIBLY SEXIST AND YOUR BLOG IS PROBLEMATIC.

Well my LIFE is problematic, fucker, so what. But while you’re here and angry, my little social justice warrior, let me explain the difference between ACTIVISM and SLACKTIVISM. And why the Ice Bucket Challenge is both, and why that’s okay. (tl;dr – IT IS OKAY BECAUSE IT IS FUCKING EFFECTIVE)

I have a deep-seated hatred for a lot of ‘awareness’ campaigns. I feel you. I cringe when I see pink ribbon bullshit on everything (SERIOUSLY SUSAN G. KOMEN IS AWFUL AND YOU SHOULD NOT GIVE THEM YOUR MONEY). I am actually ANGRY when those stupid games inevitably make their way around on Facebook again, where some girl sends a facebook message to all the other girls on her friends list asking them to post their bra color, or their handbag color, or shoe size, and not explain what that is or why. Let me run this by you:

22!

18!

10!

293495!

…Are you now aware of breast cancer being a problem?

Well, yes, because EVERYONE IS AWARE OF BREAST CANCER. EVERYONE ON FACEBOOK KNOWS WHAT IT IS AND THAT IT IS TERRIBLE. But seeing a string of numbers on your friends feed does NOTHING. Except piss me off, because you’re wasting my time AND feeling smug about it.

This is slacktivism. “Post this status in honor of everyone you know who has died of cancer!” Okay, that does NOTHING. “Sign this online petition!” That does NOTHING. “Retweet this!” NOTHING. Nothing has changed because of you. When you post pictures of abused animals, you are actually HURTING your cause, because I do not like to see that and I will defriend your ass so fast you’ll see smoke.

Protip: If you are friends with the sort of people who need to be told that animal abuse is bad, YOU NEED NEW FRIENDS.

I can see why you might be tempted into Ice Bucket Challenge hate. But let’s see if I can’t calm yo tits FOR you. Hakuna your tatas, as it were:

1. “How does dumping water on your head cure a disease?” It doesn’t. Shut up. No one thinks it does.

2. “This is wasting perfectly good water.” Uh..we can’t send this one bucket of ice water to Africa. Just like the crusts from your sandwiches when you were a kid, this particular act of waste is not taking food/water directly out of the mouth of a person who needs it. If you want to be outraged about water shortages, go write a letter to Nestle and tell them to stop bottling water from drought regions and selling it.

3. “You bought that ice instead of just making some, you could have given that $2 to charity.” True. I also bought this soda, and this shirt, and my bus ticket to get to work. I have a LOT of money I could have given to charity. I didn’t. I’m just not that much of a saint. And neither are you. Until I see you selling your shoes to give the proceeds to charity, until I NEVER see you with a Starbucks in your hand or a store-bought lunch, you can shut it.

4. Most of the videos don’t explain what ALS is. No. Most of them are 7 seconds long, and it takes that fucking long to SAY Amyotrophic Lateral Sclerosis, never mind saying what the fuck it IS.

5. “You’re dumping water on your head rather than donating money”. That’s not necessarily true. In the original bet, it was an either/or. It’s evolved into an AND situation. You don’t get visibility into the bank accounts of the people involved, so you don’t get to see that part and don’t know for a fact that they aren’t. But a lot of people ARE. See #6. Also? There are some little kids doing this. Last I checked, 6 year olds don’t have $100.

6. “This is not doing anything to raise awareness.” You, sir, are a liar. And you should feel bad. Or maybe you’re so wrapped up in your cocoon of IBC hatred that you’ve not seen anything about the RESULTS. So let me educate you:

Today, the ALS Association reported that they have received donations totaling over 22.9 million dollars.

Last year by this time, they’d received 1.9.

Let me do the math for you.

In the last two weeks, the ALS Association has received ONE THOUSAND TWO HUNDRED PERCENT OF ITS USUAL DONATIONS.

ONE.

THOUSAND.

TWO HUNDRED.

PERCENT.

I have no statistic on how much of an increase OTHER ALS charities have seen. Oh wait, let me google that shit for you. Project ALS has raised $96,000 in a single weekend. Team Gleason isn’t reporting, but I know damned well they’ve seen a spike from co-opting this meme (bastards). The MND Association has certainly seen an upswing in donations.

The OTHER thing you don’t see?

Millions of people watching these videos, wondering what the hell ALS is, and then googling it. And learning.

THERE is your awareness, bitches. In these last two weeks, if even a THOUSAND people became aware of ALS without having been directly affected by it (because that’s cheating), then I’d consider it safe to say awareness has been raised. But tens of thousands of people now know what ALS is, when a month ago they were ignorant. And MILLIONS have heard the name.

How the fuck can you hate that?

You can’t.

Sit down. Shut up. Watch the fucking videos. Laugh. Donate some goddamn money. Lighten the fuck up.

ICE BUKKIT LOLZ

August 15, 2014August 15, 2014 tragerstreit2 Comments

I’ve been getting OH SO MANY links to videos of people doing the “ALS Ice Bucket Challenge”. And just as many questions about how do I feel about this?

…That’s complicated.

If you’re somehow unaware of this whole thing, the ORIGINAL idea was put forth by a guy – NOT PETE FRATES, he did NOT start this, okay? – who challenged a friend to *EITHER* donate $100 to ALS research *OR* dump a bucket of ice water on his head. Once you do it, you call out three friends to do the same.

And it’s the EITHER/OR part that gives me mixed feelings.

People have missed the original intent. It’s gone beyond – with people just…dumping a bucket of ice water on themselves. Proudly showing the world that they *won’t* donate to ALS research, I guess? In fact they would literally rather pour ice water over their heads than give money to a charity. According to the original rules.

The most amazing star power has taken this up, and I really really really hope they’ve missed the point and are doing BOTH ice dump AND donate, because if Martha fucking Stewart won’t even slide ALS research a Benjamin? Seriously fucked up. But for the most part, it’s just become this machismo WOOOO ICE BUCKET YAY LOOKIT ME egofest. I’m really happy that nearly all of the celebrities I’ve seen do this make a point of calling it the ALS Ice Bucket Challenge and asked people to donate money to the ALS Association.

..except Steve Gleason. Fuck that guy. His “No White Flags” charity is a good one, but in his challenge video he’s co-opted it for his own fucking charity instead of the actual ALS Association, WHICH IS WHERE THE MONEY BELONGS. NO WHITE FLAGS, NO THUNDER STEALING, ASSHOLES.

The Ice Bucket Challenge has gathered a LOT of hate, too. “This is so fucking stupid. How does dumping ice on your head cure ALS? ”

Uh. It doesn’t. Which, No shit? No one really thinks brainfreeze will magically fix a terminal disease.

Is this promoting awareness that ALS even exists?

YES.

Holy SHIT yes. It’s completely unlike all of those stupid goddamned breast cancer awareness games on Facebook (“post the size of your shoe with a frowny face! teehee! Don’t tell anyone what it means!” HOW THE ACTUAL FUCK IS IT PROMOTING AWARENESS IF YOU ARE ACTIVELY REFUSING TO EXPLAIN WHAT YOU ARE DOING, YOU DUMB BITCHES) – promoting ‘awareness’ to something I’m pretty goddamned sure people are already aware of. Seriously. WHO HAS NOT SEEN THE MOTHERFUCKING PINK RIBBONS BEFORE. YES WE KNOW ABOUT BREAST CANCER K THX. (BTW SUSAN G. KOMEN IS A COMPLETE BULLSHIT CHARITY PLEASE STOP GIVING THEM MONEY, YOUR PRECIOUS PINK RIBBONS AREN’T HELPING DO SHIT. (Seriously Google that shit. They are terrible and have terrible policies. Don’t give your money to a ‘nonprofit’ that pays its CEO more than the motherfucking President of the United States.) )

Unlike breast cancer, ALS NEEDS an awareness campaign. I’ve often bemoaned the fact that NO ONE KNOWS WHAT THE FUCK ALS EVEN IS. Including ME before I was diagnosed. This is how it went when I told people before:

“I have ALS.”

*blank look*

*sigh* “…Lou Gehrig’s Disease?”

(half the time another blank look, but sometimes:) “I’ve…heard of that? I think? Is that bad?”

“It’s going to kill me slowly by turning me into a meat shell and then suffocating me, so yeah, it’s pretty bad.”

And now thanks to this whole ridiculous thing, I’m finding the conversation going like this:

“I have ALS.”

“Oh, shit, I’ve heard of that, that ice bucket challenge is going around. That’s pretty fucking serious, isn’t it? I’m sorry!”

It’s still not common to find someone who knows exactly what it is, but it’s a pretty good goddamned start. ALS doesn’t have a sexy celebrity spokesperson or a beloved childhood actor suffering from it, there’s no “star power” to my disease. The best we have is Stephen Hawking, and half the time people don’t even know who HE is, even after you say, “The scientist guy? In a wheelchair and talks with a robot voice? *sigh* He was on an episode of South Park?” And because human beings are FUCKING TERRIBLE ANIMALS, without ‘star power’, no one gives a shit.

Even though people have completely missed the point (except for example Jimmy Fallon, I fucking love his challenge video), it’s still getting word out that ALS is a thing. A thing that deserves attention and money and time. And thanks to this stupid meme, the ALS Association has seen a DRAMATIC upswing in donations. There’s been SUCH an upswing in donations lately, SO many people hitting the ALS wiki, that it’s goddamned inspiring.

And I just can’t hate that.

Using my powers for evil

July 15, 2014July 15, 2014 tragerstreit6 Comments

I received a jury summons in the mail yesterday. Boooooo. I don’t want to sit on a jury! I have a friend who loves jury duty, but he’s crazy. (edit: I have, apparently, MULTIPLE friends and they’re ALL crazy) If I’m selected, I might have to deal with horrible people having done horrible things, and I have a really hard time dealing with suffering. I can’t watch horror movies – it’s not the gore that freaks me out, it’s the suffering. I’m far too empathetic.

I have a chance, of course, to ask to be excused. The most common way is to declare hardship; “I can’t afford to be off of work this long”, “I have no daycare for my children”, “my job is under deadline and it’s critical that I’m there”, etc. My employer is awesome enough to pay its employees for serving on a jury. I won’t accrue vacation time while I’m doing it, but I’ll at least get paid to sit there, regardless. So I can’t declare financial hardship. I don’t have kids to take care of. And “I don’t want to” is not a valid hardship.

But. A friend is egging me on to say, “I have a terminal disease and I don’t want to use any of the time I have left doing this.”

Which….is valid. Totally.

But it feels like a cop-out. I mean..yeah. Dying, limited time, etc. But, I’d be sitting at WORK if not in the jury box, so …..net time lost is zero, really. And money made, regardless. So, in the grand scheme, it doesn’t actually matter. But at work, I can feel like I’m being useful and screw around on the internet while I’m listening to meetings that don’t really matter. On a jury, I have to pay attention.

I’m likely worrying about nothing. In ALL the times I’ve been summoned, I’ve never had to actually serve.

….and because I just said that, I’m totally going to have to. Hopefully it will be a theft and not rape or murder.

What do you think, Hive Mind? Should I try playing the ALS card to get out of my civic duty?

Simple Gestures

June 19, 2014 tragerstreitLeave a comment

Very little makes me quite as happy as random happy surprises in the mail. For this reason, I was an avid participant at http://redditgifts.com/ , where you sign up to send a random stranger a gift, and another random stranger sends YOU something. I got burned a couple of times, but overall, it was a lovely experience. I’m actually waiting on my Arbitrary Day exchange now! I was matched with someone in the Netherlands, I hope she likes what I gave her.

Awhile back, I set something up with my friends called Happy Boxes. The idea was similar, only you knew who your match was: me. I sent anyone who asked a box full of things that made me happy – things like cake sprinkles, finger puppets made into fridge magnets, candy, stickers, scented candles. In return, they’d send me something. I sent out ten boxes, and I think I got four back? But the ones I got back were awesome. My dear friend Marina went COMPLETELY overboard and sent me a huge box of baking supplies from King Arthur Flour. Another friend sent me a box chock full of awesome things she’d been collecting for me for some time.

It is a guarantee of happy. A complete cure for a wretched day.

I sent a message to my friends on facebook awhile ago, offering to do this again. I had some people tell me they were interested. But thennnnnnnn I bought the house, and then this whole Godzilla Disorder thing happened. So I lost track of the Happy Boxes, and they were relegated to the back burner. Maybe forever.

One of my friends, though, didn’t forget, and a three weeks ago, he sent me a message:

Hey Vash, check this out and gimme a yea or nay: http://www.lootcrate.com/

I thought he was asking for opinions before he got himself a subscription, so I told him I knew a couple of people who subscribed, and I’d heard that they were awesome!

And he told me he “would be honored to buy me a sub”.

And I blinked a few times. And had the most intense mental battle with myself. Because I have a really hard time accepting acts of kindness, as I’ve said before, but I’m ALSO trying to be more gracious about it when people offer to do awesome things for me. So I said okay.

It arrived yesterday, and it was FULL OF AMAZING THINGS including one of the best teeshirts ever. I raved about it to my facebook friends, and posted lots of pictures, and thanked him a lot. Because it was an incredibly sweet thing he did, and the timing was perfect as I’d had a REALLY rough week at work. And among the comments on my pictures, he posted this:

“I want to take a moment and explain my motivation, since this post may reach eyes that don’t know the whole story. For the record, I got permission from my wife before I offered to set this up.

I met Vashti Ross about 12 years ago. We worked together at Stream in a call center, and became friends (as much as two co-workers can become friends, anyway). Years later, we reconnected over Facebook, and I’ve watched the story of the ALS diagnosis.

When the ALS was confirmed, it broke my heart and I wanted to do something to help, but being a work buddy is pretty low on the relationship priority chain. Then, last month another friend Cameron at my current job posted about LootCrate, and I basically had a big House-style epiphany.

“kindness in.” There’s nothing I can do about the disease, and there’s probably a few dozen closer friends/relatives that can help with daily needs, but I sure as hell can add to the “happy moment” pile.

To quote The Doctor: “The way I see it, every life is a pile of good things and… bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t necessarily spoil the good things or make them unimportant.”

Vashti, I am thrilled that I’ve added to your pile of good things.”

Nathan is an amazingly sweet person. I also adore that he quoted the Silk Circle *AND* Doctor Who.

That whole “I don’t deserve this” definitely kicked in. MORE so, when he posted a referral link to that site, where every five people who subscribe through it gets me another month, and then my dearest friend Megan posted that link to her wall: “One of my dearest friends, Vashti, was recently diagnosed with ALS (http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis), and though there is nothing we can do about the stupid disease, there is plenty we can do to shower her with love while we can.”

Annnnnd my heart burst out of my chest and I felt so. Amazingly. Loved. And then another friend shared that link. And then another. I am completely overwhelmed by love. THERE IS GOOD IN THE WORLD AND I AM ITS ~~UNWORTHY~~ RECIPIENT. And while it’s LOVELY to get a box of awesome little nerdy geeky fun things, it’s the fact that someone out there, that I’ve not even SEEN for ten years, cared enough about me and wanted to lighten my load just a little bit….that..I’m not gonna lie, I totally teared up. Am doing so.

I am so so so grateful for the people in my life. In a comment thread on one of those posts, I told a friend-of-a-friend that I was lucky to have such an amazing support network. I didn’t have to ask for anything. When I looked up, everyone had their bags packed for this journey and were coming with me, whether I asked them to or not. “You ARE going to get over yourself and ask for help, and we WILL provide it. Now. What can we do for now?” I don’t know what I’ve done to deserve them all. You all. Every planet in my orbit.

It’s what will make the difference between simply surviving with this disease or living with it.