Tag: i need to talk about this

Accommodations

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If I’d been told five years ago what ALS was, and been allowed to do as much research as I like, and then been asked to write down everything I thought might be a problem for someone with the disease, I’d still have gotten most of it wrong.

That’s part of why I made this blog, I guess. To track those things. Even things I probably would have mentioned, I would not have gotten completely right. I am very, very lucky that I am not the first person with this disease, and so every little one of these little problems that have come up almost always has a solution. And usually? Even a marketed product to fix it. A law to address it. Something.

For example! I have no strength in my feet. That’s a duh observation. But one of the unexpected consequences of that fact is that at night, the weight of the blankets simply resting on top of them becomes painful. The weight of the blankets push my feet down so my toes curl and my heels dig into the mattress. When you have strength in your toes you don’t even register the weight. When your feet are useless, you can actually get bedsores on your ankles and heels just from that little bit of weight. So now you know!

Luckily, folks have had this problem addressed before. One answer is a kind of cushiony boot that you wear to bed, to give your ankles extra cushion. But the BETTER solution is something called a bed cradle – a C shaped frame that slips under your mattress and keeps the covers up off your feet. It’s also awesome for cats to lean against, apparently.

(there will be a cute pic of my cats leaning against the bed cradle here as soon as my site stops being a shit head and lets me upload)

I love this thing.

One thing that ABSOLUTELY occurred to me as a need, however, was the need for a bathroom with bars and enough space to get a wheelchair in. It’s a no-brainer. And yet. AND YET. So many places get it wrong. I …hold on, before I get into this rant, I’ma look up what the legal requirements are. If i were a benevolent dictator, everyone who owns a public place would have to do a day in a wheelchair to get a feel for it and see what the hell people have to deal with, so they could visualize how best to build a proper fucking bathroom. And I know there are absolutely the kind of assholes who comply with the absolute letter of the ADA law but to the point of practical uselessness. I suspect that is the case for the Lake Oswego Stanford’s restaurant, which I’m about to rant about in a second. I am calling them out specifically here because we went there for Thanksgiving, and my experience with their toilet was so goddamned frustrating it verrrrrrrrrrrrry nearly ruined my day because I almost had to call J to come rescue me.

…hoooboy yah that stall was NOT compliant. OK so here is the photo I took of myself sitting on the toilet, in preparation for sending it to J by way of explanation why I needed him to come get me.

(there will be a pic of the bathroom stall here as soon as my site stops being a shit head and lets me upload)

My wheelchair is backed all the fuck back against the door. The foot rests on my wheelchair had to be folded up to get my chair in all the way so I could close the door. My knees are apart because there is literally three inches between the edge of my chair and the toilet bowl. On the one side of the stall is a very flimsy wooden partition and no grab bar. On the other wall? A grab bar AND THE FUCKING DIAPER CHANGE STATION MOUNTED ONE INCH ABOVE IT. The bar was rendered completely fucking useless because of that goddamned thing. There was another bar along the back wall, mounted one inch above the toilet tank.

RESTAURANTS AND OTHERS, Y U DO DIS

I should have not bothered, but I really had to go, so I managed to maneuver the chair in at an angle. I was able to get out of the chair thanks to its seat tilt function, but A GRAB BAR ON THAT WALL WOULD HAVE BEEN FUCKING NICE. Using the bar against the back wall I was able to pull myself forward to lean against the back wall to undress. Then carefully lower myself down, because I couldn’t even lean on that non-bar wall for support (see: flimsy-ass wooden partition). The toilet was lower than my chair, and the instant I sat down I knew I was not going to be able to get back up with any sort of ease.

I finished up and took a long time to figure out how the fuck I was going to get back up. Long enough that J was sending me a text to ask if I was okay, but I was already planning on what I was going to say to him to explain I was going to need his help to get out. Meanwhile the bathroom was suddenly full of women, there was a line for the two stalls, including one woman saying she couldn’t use the other stall because she needed the bars. I almost called out to her that the handicap stall wasn’t going to be of any use to her.

After some consideration, I wound up having to lift my leg to it sidesaddle on the toilet, swivel my bare ass on to my wheelchair from the toilet, then lift myself up from there to pull my underwear back up and my skirt down. When I sat back down, I was out of breath. Humiliated. And then had to open the stall door and do a six point turn in a crowded goddamned bathroom to get to the sink while being stared at by a line of ladies. The woman who needed the stall had to wait for me to wait for both sinks to be clear, because the handicap stall door opened almost against the sink and I had to be completely out of its way to let the door close. Which meant once she was in there and the door closed, I effectively trapped her in there with my chair while I went back up to the sink to wash my hands. I’d wanted to take a picture of the stall with the fucking diaper station obstructing the bar, but there was a very long line waiting for that toilet.

I’m simply saying that Stanford’s was really lucky their pumpkin cheesecake was delicious because I might have burned the fucking place down after that.

As it is, now that I’ve seen the legal requirements and know goddamned well they are not in compliance, I’m proooooooooolly gonna lodge a formal goddamned complaint. We like to go there for family gatherings, but I’d never had to use the bathroom before. I’ve sometimes thought about starting a sideblog for really terrible public toilets and why they are not useful for actual ADA people, but I think it would just be supremely rage inducing for me and no one would give a shit who had any power to change it.

So instead I rant here in slightly TMI tones for y’all folks to read about. You’re welcome.

My bed cradle is still fucking awesome though.

Protip: Maaaaaaybe don’t prey on dying friends?

tragerstreit12 Comments

((I suppose I should be grateful. Instead of spending all day freaking out about tomorrow being my last day of work ever, I spent all day in a blind seething rage. It was a nice distraction, I guess, from the depressing AF thoughts that would otherwise have occupied my thoughts today. I knew halfway through this whole thing that 1) I was definitely going to blog about this, and 2) it was going to contain ALL OF THE SWEARS. You are hereby warned about ALLLLLLLLL of the swearing and anger contained in the following post.))

Today I am going to tell you about Jillian Mai Thi Epperly.

Maybe you’ve heard of her. If you haven’t, well, you’re in for a video treat in a moment. If you have, then this is NOT going to be the rant you expect. Oh no, it’s so much worse.

I met Jillian in fifth grade, at Faria Elementary School in Cupertino, California. She is one of the few girls I remember, because she was one of the few kids who actually was my friend back then. I was very strange little kid, and thanks to my genetic mutation I looked strange as well, and kids are horrible little monsters, so I didn’t really have a lot of friends. She was one of the few who actually spoke to me on a regular basis. I think we bonded a little bit, back then, because she was a super Asian kid with a white girl name, and I was a white girl with the super Middle Eastern name, and we just didn’t match peoples’ expectations. So we kind of matched each other.

She found me on Facebook a few years back. It was ..really strange to hear from her. She asked if I remembered her? Of course I did. You don’t forget a Vietnamese girl with a name like Jillian, especially when she was one of the few people who was ever nice to you in grade school. She said she remembered me, because when we were kids I had told her that the strange weather we were having was a result of El Niño. She told me she always thought that was the funniest thing. I was a little confused at that remark, since um…yeah, El Niño totally WAS the cause of a lot of weird weather we’d had? Why was a huge storm affecting weather patterns so funny, I don’t get it? But okay. I accept your friend request. I quickly learned that Jillian had become a rabid anti-vaxxer, and quickly blocked her from appearing in my feed but remained friends with her and honestly…kind of forgot about her. This was a couple of years ago, and I was a lot more generous and patient towards anti-vaxxers and pseudo-scientists back then. (Not anymore. SERIOUSLY VACCINATE YOUR FUCKING CHILDREN YOU GODDAMNED MORONS. PEOPLE ARE DYING OF PREVENTABLE FUCKING DISEASES WE HAD ALL BUT ERADICATED. WHAT THE FUCK IS WRONG WITH YOU.)

In my personal Facebook, I chronicle bits and pieces of this ALS bullshit journey, and post a link anytime I update this blog. Overall though, I purposely try to keep my Facebook page very light because the world at large is a fucking depressing place and I will drive myself crazy if I talk about nothing but politics and everything that makes me angry. So instead, every month I choose a theme and post related pictures. Usually it involves some kind of pun like Janusweary, with pictures containing foul language, or Gaypril, pictures of LGBT+ positive images. This month’s theme is Awwwgust, and I’m posting lots of pictures of adorable things.

This morning I posted an adorable picture of a kitten that looks for all of the world like it is smiling. It had not been posted for five minutes when I got two comments from Jillian (after not interacting with her for months and months, mind you). The first was link to her website, with a…sort of unhinged screed containing a lot of marketing language along the lines of “Are you tired of the cycle of dependence on drugs, supplements, and herbs spending thousands and thousands of dollars and you are still not feeling better 100%? ” I sighed inwardly, it was a lot of marketing babble clearly trying to sell me on whatever snake oil she was passionately involved in and wanted to evangelize about. The second comment, though, was this: “Remember I told you I’d find something for you well I created a protocol that could give you the opportunity to reverse your condition and I hope you’re open enough to read my book or at least my website before you buy the book”

I just sort of…stared at the screen for a second. Did she just…?

Really? This is what’s happening?

I typed up a reply, deleted it, started to retype, and just…got…so ANGRY. I debated deleting her comments and blocking her for real and moving on with my life, but I am emotionally fried right now for obvious reasons and I was feeling petty as fuck and..kiiiinda wanted to see my friends happen at her. So I allowed her comments to stay, and let them let her have it. And they did, in spades, because I know some VERY SMART and VERY SNARKY people who, as it turns out, are very, very protective of me, and took great delight in dragging her ass, but that’s not what this post is about.

((I love my friends so much I can’t even tell you.))

I decided to respond before anyone else could, though, juuuuust in case I was misunderstanding. The comment I eventually settled on was, “…you’re seriously trying to *sell* me something you think might cure my terminal disease? What predatory fuckery is that??”

And then my friends were all up ons, having a fucking FIELD DAY with her, and that’s when I found out that she was actually a little bit of A Big Deal in the pseudo-science community with tens of thousands of followers in a self-described (!!) “poop cult” and had appeared on Dr. Phil to defend her aforementioned “protocol” cure. Now, I’m not here to talk about her miracle cure “protocol” of fermented salt water and cabbage. That’s not at all what this post is about, and a LOT of other people have already expounded on that subject. Each of those words is a different link that will open in a new window. Enjoy that light reading for later, if you feel like it. Though I WILL include this video link right here for you to watch:

((That man is very smart, and swears like a sailor, and is my new best friend. Because he is smart and swears, yes, and we have the same Bob Ross shirt.
His videos are Good Stuff, but his research on Jillian is amazing.))

Her response was, “Wow vashti wow all I’m trying to do is help you out because of your condition knowing what you’re dealing with but that’s fine if you don’t want to have an opportunity that’s fine you can stay sick and let your friends keep you sick good luck to you” and then, “Because you deserve better than what you have right now if you don’t think you deserve that then you deserve to have whatever you want”

An. Opportunity. To give her money? For information she thought might SAVE MY LIFE.

“….you’re asking me…as a FRIEND with a TERMINAL ILLNESS…to GIVE YOU MONEY to cure my disease. I DO deserve not to be sick. And I ALSO deserve to not be taken advantage of in a vulnerable state. Even if I believed for a SECOND that fermented cabbage water would cure me, it’s unbelievable that you are telling me to give you money in exchange for this information. I don’t give a shit if it works or not; if I honestly believed I could cure anyone’s death sentence, I would hand it over in all quickness. If I could cure a friend’s cancer I would carve out my own kidney for free before they even asked. You’re not trying to help me. You’re trying to make money off of me and that is fucking reprehensible.”

After sanctimoniously telling my friends, “I will let vashti block me I am not going to be bullied by any of you people because I’m trying to help and if you guys want to stay in your little environments with no hope and all sickness then fine”, she responded to me, “And I expect a lot more out of you vashti considering you and I went to school but it seems like your sickness really took you over and made you a very hateful person and I’m sad for you”

“And I expected you to be a decent human being,” I told her, “and not try to take advantage of dying people but WHOOPS guess we were both wrong today.”

And then she blocked me.

There..

There are not enough swears and throwing things and table flips IN THE WORLD to convey my anger. This woman is an absolute piece of shit. Again, NOTHING to do with whether or not her ‘cure’ works or just makes you shit forever until you literally die of dehydration. Just. As a human being. This woman looked at me, a woman she called a friend since fifth grade, saw my debilitating terminal disease, and thought to herself, “this is a perfect marketing opportunity.”

And then after blocking me, she crawled back to her facebook cave and wrote this, which a friend was kind enough to screenshot:

I…she… She felt it was acceptable to try to SELL a theoretical CURE to a DYING FRIEND, because…I am “still well enough to buy things on the internet”.

…

…..

AS LONG AS SHE’S STILL KICKIN’ WE CAN GIT SOME MONEY OUTTA HER YET, BOYS. YEEEHAWWWWW!!!!!!!!!!! SADDLE THE FUCK UP AND LET’S GIT ‘ER PAID!!!!

what the ACTUAL MOTHERFUCKING FUCK.

THIS WOMAN IS AN ABSOLUTE GARBAGE PERSON MADE OF DOG SHIT AND FIRE.

It’s not bad enough to sell false hope to dying people just to make a quick buck, and that is some REPREHENSIBLE SHIT, believe me, but – lady, YOU KNOW MY NAME. WE WERE FRIENDS IN GODDAMNED GRADE SCHOOL. YOU KNOW MY NAME AND MY STORY AND THE HORRORS OF MY FUCKING DISEASE AND YOU SAW THIS AS A MOTHERFUCKING SALES OPPORTUNITY. And then when that BACKFIRED in a frankly GLORIOUS WAY, thanks to my friends, you crawl back to your page and act like YOU ARE THE VICTIM??? YOU WERE ONLY TRYING TO HELP ME?? BY MAKING ME PAY TO BUY YOUR BOOK AND SUBSCRIBE TO YOUR WEBSITE?

You absolute PIECE OF SHIT.

I said just in my last post that I would never wish ALS on anyone, but holy FUCK is she coming close to a candidate. Cause not only allll of this, she is ALSO a goddamned hateful human being who thinks her bullshit will “cure” gays and trans and autistic people. BECAUSE SHE THINKS HOMOSEXUALITY IS SOMETHING THAT NEEDS TO BE CURED WITH SEWAGE. So. Yeah. In the name of science, I hope she DOES get ALS. It will be a scientific experiment. If it works and ALS goes away, we have a cure and she can have a goddamned Nobel prize. If it doesn’t, then the world is rid of a predatory batshit waste of human tissue who spent her final days shitting out her own stomach lining.

I’m good with those odds.

What’s Next

tragerstreit2 Comments

Three weeks, one day. And God knows how many times more I have to repeat this conversation:

“So what are your plans after you leave?”

“Well, for the first two weeks of vacation, I plan to sleep. I’m purposely planning to do absolutely nothing for those first two weeks. It’s going to be GLORIOUS. After that, I’m not really sure. I will probably volunteer somewhere. I will go absolutely crazy with nothing to do for too long. So I’m not sure. I’ll figure it out.”

“Well good luck to you.”

Cue uncomfortable undertones, awkward silence, shuffling to exit the conversation. In reality, here’s how I would like that conversation to go:

“So, what are you going to do after you leave?”

“Die.”

I mean, that is what is going to happen. That is why I’m leaving. I can no longer work because I’m going to die. But because we suck at conversations about dying and death, because our society is so uncomfortable with the mere mention of the D-WORD, in polite society I’m not allowed to say that. Even though we all know it’s true, and no shit, right? Medical retirement; I am leaving because I have a medical condition that is debilitating and ultimately, sooner than we want to admit, terminal. THIS DISEASE IS GOING TO KILL ME DEAD, IS ALREADY KILLING ME, I AM NOT LEAVING BECAUSE I WANT TO.

And so instead, I am forced to have the same inane conversation. And even though they know the real answer, the true answer, I go through the motions and come up with some stupid answer that denies my own impending mortality. I mean, what are they honestly expecting me to say? “Oh, you know, I figured I would take two weeks in the Hamptons. After that, perhaps pursue my scuba certification and do a week in the tropics. Learn a new language. Take up waterskiing maybe. Maybe learn a new vocation. Maybe finally get my baking business off the ground.”

For fucks’ sake. No. I’m going to continue to get my affairs in order, and eventually I am going to fucking die. I am going to keep losing abilities you take for granted, like feeding oneself and scratching your nose and breathing and not peeing your pants. In the meantime, I am going to continue to collect stickers, watch cartoons, and pet my cats until I can’t, and then? I am going to die.

Because ALS is a motherfucking terminal disease.

Three more weeks and one more day of this bullshit conversation replaying itself over and over. Three more weeks and one more day of pretending I’m leaving because I want to, and not because this disease is forcing me to. This has made me extra specially grateful for all of the people with whom I can actually have that frank conversation – the ones who don’t pretend not to notice that my hands are no longer working. The ones who, if they actually asked that question, I could out right tell them “die”. But they know better to ask. Because they already know. So instead they ask how my cats are doing (they’re good!), if I’ve found a house yet (not yet! The housing market in Portland sucks major ass), how well does SSI pay out (not well, but my job has awesome supplemental disability benefits)? Better, more important questions.

Death positivity kids. It’s sorely needed. I crave it like sugar and hugs. I want, I NEED to be able to have these conversations without feeling like I’m intruding on someone’s fragile psyche. Instead of what do I plan to do with my time, like it’s some summer vacation, I would rather people ask me if I have my affairs in order? (Almost!) Do I have a living will? (Yes! And a POLST form!) Do I had support I need the time I have left? (I think so!)

Three weeks and one more day. Before I can get on with the business of dying, instead of pretending like I have some plan for my future.

Because I don’t really have one, anymore.

And you know what? That’s okay. It’s normal. Not everyone gets to see 50. It sucks and it is sad, but it is normal.

Unlike this stilted-ass conversation I keep having with y’all.

Bent Out of Shape

tragerstreit2 Comments

Holy SHIT people are angry about straws right now.

If you’re lucky enough to be completely ignorant of what I mean, now is a GREAT time to stop reading this entry and move on with other happier aspects of your life. No one would blame you. It would probably even save you some heartburn, because damn, there are a Lot of Opinions on the Internet right now.

Quick backstory: a picture of a turtle which had ingested some plastic straws (do not Google it, it’s super sad) has gotten a lot of people up in arms and clamoring for a worldwide ban on plastic straws. Whole and complete, no exceptions. PLASTIC IS EVIL AND MUST BE ERADICATED. This is a great and noble idea, and I fully support nature conservancy and saving the planet and all of that other awesome stuff. Go Mother Earth.

The problem, of course, is that some people actually fucking NEED plastic straws.

I have read more disability erasure bullshit in the last couple of days than I have read probably in the last year. Actual sample quote: “Why is this even a question? You just pick up the glass and drink from it, how hard is it? No one actually needs a straw ever.”

…Well, Susan, you ableist piece of shit, it actually is NOT that fucking easy. Friends who have been out with me to restaurants recently can attest to this, as they have uncomfortably watched me attempt to drink from a water glass without one. With my current rate of disability, picking up a drinking vessel means clasping it between my two fists (because MY FINGERS ARE USELESS GARBAGE MEAT NOODLES) and taking a sip before placing it back on the table, hopefully without spilling or running into anything. If I can pull it off and get the glass back to the table with a simple clink of glass on ceramic plate, I’ve done well. But that’s becoming impossible. FUN SCIENCE FACT: WATER IS HEAVY.

…I need a goddamn straw.

I currently carry around paper straws, for these instances. They’re still pretty wasteful, but it’s a compromise. Carrying around a reusable one is not practical, because I can’t operate fiddly little brushes or squeegees to clean the thing when I’m done with it, necessitating me to carry a sticky dirty straw in my purse until I can get home and ask someone to run it through a dishwasher for me. In a life already fraught with humiliating reliance on other people’s kindness for the simplest dumb stuff, and existing as an increasing imposition on others, a reusable straw is just one more fucking thing to have to ask people to take care of on my behalf. Paper straws are a concession to my disability and a temporary compromise for conservation.

I actually use a lot of disposable things, and feel ashamed for every fucking one. My liberal snowflake heart cringes every time I do, but using paper plates means I can actually lift the thing without spilling food all over my lap because ceramic is too heavy. Using a paper cup means a condensation-slick glass is not going to fall out of my hands and soak my bed when I try to quench my thirst. My hands don’t work well enough to clean out the cat food tin, so it goes in the trash. Every item disposed of makes me feel incredibly guilty, but these are things I have to do now. I don’t have the privilege of washing dishes anymore, or making my life more difficult in the name of reduce, recycle, reuse. It is an inconvenience to you, and a Major Fucking Undertaking to me. And I know in my heart that this is completely understandable, these are sacrifices ALS has demanded of me, and in the grand scheme of things, the amount of trash I accumulate is really not that big a deal.

Not to hear Susan tell it though. I am single-handedly raping the planet because I need a plastic bendy straw.

There’s an awesome chart going around on the Internet right now, and I’ve had the occasion to share it many, many times over the last few days. I’ll share it here, too, because it’s goddamn useful and I am tired of explaining why Product X is not a universally viable alternative to a disposable bendy plastic drinking straw. Observe:

Useful Chart of Usefulness

Currently, I have the luxury of getting away with paper straws. Keyword here: LUXURY. Soon though, soon that will not be an option. The day is coming when I’m only able to slightly turn my head to the side to get a sip of water. Eventually, not even that. I will not be able to lift my body and position myself above a cup with a straw sticking straight up out of it in order to hydrate myself. I need that stupid little bendy thing, that corrugation that makes it almost impossible to make out of any material but plastic and makes cleaning a major undertaking instead of a quick rinse in soapy water. I need the straw to be positionable, and I don’t have a devoted full-time staff who are able to hold a cup to my lips in order to hydrate myself, or constantly wash my dishes, and all of the other things that you don’t even really think about. Because you’re not disabled and you don’t have to.

But I think about them. Because I have to.

I’m learning new things all the time, myself. Before the above chart, straws as a choking hazard didn’t really even occur to me, but now that I think about it, of course they are. Of course putting a rigid thing between your teeth is an injury hazard when your jaw suffers spasticity and clamps down for no reason. Of course temperature tolerance is going to be a concern, when you are relegated to an all liquid diet and not just sipping cool drinks or refreshments. These seemingly no-brainer ideas are new to me, even.

So I’m simply asking that maybe you pause and think about these things too, before you go off on me and people like me who actually need the fucking things. Understand that the ability to do without straws completely is a luxury. Understand there is no simple answer to the horrible problem of plastic waste. Understand that consumer waste is a tiny fucking fraction of this problem, and huge corporations need to be held much more accountable for their part. As the chart says, the burden of a solution should not rest upon this shoulders of the disabled. We are the victims of this problem, not the fucking perpetrators.

Someone who thought they were being clever asked what people did before the invention of straws then, if they are so necessary? Medical professionals answered bluntly: people aspirated liquids, got pneumonia, and died. Plastic straws are LITERAL FUCKING LIFESAVING MEDICAL DEVICES.

So Susan, I’m extremely happy for you that your reusable plastic cup and rigid ass plastic straw is a viable option. For you. Captain Planet would be really fucking proud of you. Go ahead and wear that gold star. Just please recognize that other people on this planet exist, and that your solutions are not perfect ones. Recognize them for what they are. A good idea. A place to start. The beginning of the necessary conversation.

And understand you’re not taking my plastic bendy straws away from me until I’m dead. You can quite literally have them over my dead body.

Death Cafe

tragerstreit4 Comments

I have always been a spooky kid. From a young age, I have been fascinated by the aesthetic of death, the graves and skeletons and ghosts, and later Victorian memorial photography and mourning jewelry. I was peripherally aware of death, of course, my whole life. We all are. It wasn’t until Jack Kevorkian came into the American consciousness that I learned that I had Definite Opinions about capital D DEATH as an absolute, as well as an aesthetic. I found that I strongly believe we all ought to have control over our own mortality, and had my first real experience with how afraid society is to discuss the subject at all. Later, when going through the Diagnosis Cha Cha, I experienced my first profound frustration with peoples’ willingness – and even their ABILITY – to discuss it at all.

Today I attended my first Death Cafe.

You can learn about them here: http://deathcafe.com/ It’s essentially a safe space to talk freely and openly about death, and it’s meant to be a really positive experience. I first found out about them through the Order of the Good Death; I’ve fangirled about Caitlyn Doughty and her Ask a Mortician video series before. I finally worked up the nerve to sign up and attend one; my hesitation was not at all about the subject matter, but about, you know…that whole show up and talk to total strangers. This is what I do here, of course, but in a more one-sided capacity. It was a space to get to know other death-curious people, exchange ideas, and finally -FINALLY – be allowed to talk freely about this whole ‘death’ thing.

We had a wonderful facilitator at the table, who was warm, inclusive, and knowledgeable. There was a young woman who had older parents and didn’t know how to talk to them about death, a wonderful older woman who had the same frustrations with being unable to talk to her loved ones about death, and an artist who works with the dying to design their own crematory urns.

FUCKING AWESOME, RIGHT!?!

…Damn right I got her contact info.

We all spoke for about two hours, about everything from death acceptance to memorial services and keepsakes to death-positive media. I learned about POST/POLST forms (a beefed up Advance Directive that is hot pink and you put it on your fridge so the ambulance folk know what you want). I got a very warm and supportive hug. I taught a delightfully sweary old woman the phrase “lalochezia”. I learned about support groups that aren’t support groups at all for the recently bereaved. We talked about how America doesn’t really have its own death rituals as a culture, and so when it comes to death, we are all at a loss as to what to do. I mean, wen someone dies, you show up with a casserole, but then what? We don’t have societal rules and custom for how to treat the dead, besides paying total strangers to come deal with it and sweep the whole thing under a clinical rug. We’ve become divorced from Death, and it is a damn shame.

I will definitely be attending more of these. It was a pleasant afternoon of drinking tea, eating cookies, and having a chat about things you don’t normally get to talk freely about. I highly recommend you seek one out in your neighborhood. The more we talk about this, the more normal it becomes, and the more healthy our attitude towards death as a culture becomes. And this is a good thing. It helps the dying to not feel so alienated. It helps the grieving to not feel so alone. It helps us all to know what to do, how to have these conversations while we still can.

Knowledge is power, indeed, and by talking about death, we destroy some of its mystique and its terror. We make it normal, and we help each other through impending loss – be it even our own departure. I want to be able to have these conversations with my loved ones, but until that becomes normal and okay, I can have these conversations with strangers.

It’s almost as good.

Aftermath

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I have been granted the singular privilege to bear witness to her grief.

My friend had her father ripped from this earth, eaten alive by cancer while everyone helplessly stood by. Cancer’s a motherfucker like that. Especially it seems, with men; men of an age too stubborn to admit Something Is Wrong until it’s too late, and pride stops them from accepting all of the treatments, all of the chances. Her father was like my grandfather, that way. My grandfather died of prostate cancer, and had refused potential treatments and surgeries because they’d make him ‘less of a man’ or some bullshit, but he fought on his own terms. It was his decision to make. And her father’s.

He had lived in South Dakota, and she had to return, to disposition his estate. She invited me along, because it’s beautiful there. I said yes, because goddammit someone needed to be there while she walked through her father’s place and went through his things. And because I’d never been. And she needed an ally. I went with her in the mindset to be as helpful as possible, to make this transition as easy as possible, to shield her the best I could from the inevitable shitstorm that happens when someone dies.

We had many, many conversations about grief, over the six days we spent together. I’ve always found, and I’m not alone in this observation, that grief brings out the absolute worst in people. Normally loving and trusting people are suddenly quibbling over who gets grandma’s Jell-O mold, and Brother X is angry that dad only left him $20k, but Brother Y got the house, even though Brother Y moved his whole family and job and world to be close to Dad to help him when he got sick and Brother Y never even called who cares because it should be split equal. Meanwhile Aunt Fran is going through the medicine cabinet and the liquor, and Neighbor Q has claimed that heirloom quilt even though you’ve never met her before she INSISTS that she came over like, ALL THE TIME to help and he said she could have it and starts crying, and they let her have it even though we’re all pretty sure Grandma made it for him when he was sick with measles when he was 12 and maybe she’d like it back, to keep her warm at the nursing home while she mourns the son she somehow outlived.

I have my theory that it’s because of a cosmic sense of entitlement. My one true, real, and serious beef with the Universe, is that it doesn’t stop and let you catch your breath when something horrible happens. So out of nowhere, my grandfather died, and I wasn’t allowed to catch my breath at all, I was suddenly thrown into funeral arrangements and visiting relatives I’d never met, and holy GOD, people can you LEAVE ME ALONE, my GRANDPA just died. And the thing is, they’re going through the same thing. Holy shit, my FATHER just died. My BROTHER just died. And we all walk around with this gaping hole in our souls, and it feels like the goddamned universe owes us something for the incredible injury it just caused. And when the materials are settled, you feel entitled to it all, because Jesus God, that was your GRANDPA. The Universe just took your Grandpa, you deserve that fucking stereo of his, something, a piece of him, a memory of the times you were laughing and frustrated trying to teach him how to USE the thing, and the dance party you had to his old music when he finally got it. And next to you, your uncle is thinking, holy fuck, I just lost my DAD. The universe took my Dad, the LEAST it could do is give me his stereo, that I bought him for Christmas that one year. Everyone is bleeding, mourning, thinking that no one else in the room has the slightest fucking CLUE how badly this hurts.

And they don’t. They can’t. Just as you are blinded to THEIR pain, by yours. Everyone is hollow and aching, and scrambling for what they believe the world owes them. In the process, their grief causes harm, the worst comes out in people, and the ending of a life all too often proves to be the ending of relationships. Arguments over funeral arrangements cost friendships. Dispositioning the estate has torn families apart forever.

I watched this process from the outside, flavoring it with my own experiences, because her father and my grandfather had VERY much in common. It was impossible not to draw parallels. Two very strong, hardworking men, good with their hands, generous to a fault, loving, open hearts, strong faith and strong backs. And very easily taken advantage of by unscrupulous people. It was hard watching her have to be The Bad Guy, because she has no record of ‘gentlemen’s agreements’ and no, she wasn’t about to give up two thirds of a property just because they were friends, and it just didn’t seem to get through peoples’ heads that yes, this all belongs to HER now. They’d lost their friend and felt entitled to things, but she was his DAUGHTER and he entrusted her to take care of his estate.

I helped her go through his things, and decide what to donate, what to throw away, what to keep. It was like tiptoeing through someone else’s life, all at once mundane and profound. You get a secret glimpse into someone’s private life, and it feels like sneaking and prying, though they’re not there to mind it. Dirty dishes still in the sink. Half packs of gum on the kitchen counter. Mundane. A shelf of books, a peek into the sorts of things that entertained him. Profound. Clearing out the bathroom of half-used toiletries. Intimate. A total stranger, putting a dead man’s clothes in a bag for donation. Invasive. Every new thing a question for his daughter, “What would you like done with these?” Overwhelmed.

And through this, I gained incredible insight.

I had gone with the express intention of helping her through some serious shit, and provide happy distractions while she showed me around the very beautiful places, but I wound up with a concrete and valuable reaffirmation of a lesson I had already learned. A solid restatement of something I already knew to my core.

DO NOT PUT OFF SETTLING YOUR FUCKING ESTATE.

WRITE YOUR MOTHERFUCKING WILL.

Decide what you want to do with all of your shit, BEFORE you die.

He didn’t want to think about it, and I don’t blame him, really. In his case, settling his affairs was outright admitting he didn’t believe he could beat cancer. Not at ALL because he didn’t love his daughter and didn’t want to make things easier for her, but just because he was afraid. So even though she asked the hard questions, and he knew he should answer them, he couldn’t. He couldn’t face that fear, that pain, that reality. A friend of mine failed to settle his affairs and left his wife in chaos because he didn’t want to think about it. I haven’t sealed up my things because I am lazy and believe I still have some time. There’s a thousand excuses why not to, but it comes down to, it’s boring and depressing, and you’ve told yourself you’ve got time to think about that.

But maybe you don’t. That’s why NOW is the time to settle your affairs. You need to have a Living Will, at least. Those cost nothing. But you should have a plan, a document that lists who’s in charge of your bank accounts, your online accounts, your healthcare decisions, who gets your shit. You should have that settled NOW, before you know your clock is ticking. Because it still is, even if you don’t hear it right now. Everyone should have a plan for what becomes of them, their things, their feelings should be known. Even 12 year olds. Who gets your diary and your band posters?

I realize, more than you know, that it’s really hard to think about. It sucks. A lot. Your brain goes all staticky because you don’t want to imagine that world you no longer exist in. I believe it is literally impossible for the human brain to fully grasp the concept of your own death. It’s too big an idea for your brain to hold. But you have to make this plan. You have to make your wishes known. You have to write down somewhere, how to access all of your accounts. You have to decide who is going to have to be burdened with making sure your will is known and carried out.

Because the alternative is making your wife collapse into tears because you have so much fucking paperwork to sort through and you never talked about what was important and where your passwords are. The alternative is some shifty relative making off with your sewing machine even though you meant for it to go to your sister, but no one knew that because you never fucking wrote that down anywhere. The alternative is someone accidentally donating that book to Goodwill that you had hollowed out and stored ten thousand dollars in. The alternative is your wayward child completely fucking over her siblings because you didn’t SAY who should settle your estate, and your children are too buried in their grief to care as much as they should. The alternative is causing your loved ones a world of hurt and unfairness, on top of the aching loss of YOU, because you found it too depressing to think about. Only now they’re drowning in that depression, and you’ve left them no handholds.

The alternative is my friend, buried up to her neck in funeral arrangements and memorial services and going through her dead father’s belongings and trying to determine what’s valuable while fending off opportunists. Too busy to allow herself to grieve, unable to let herself fall apart, because her father didn’t want to have those conversations while he lived. And so now she lives in a state of suspended grief, unsure when it will all come crashing in, willing herself to keep it together just a little bit longer. When it’s not fair that she HAS to. This was her FATHER. She loved him with her life. She took care of him in his final moments, and the Universe owes it to her to let her mourn.

But the Universe is not fair, because it doesn’t allow us to catch our breath when something important goes bad.

The Universe is an asshole. You don’t have to be. Do your best to not add insult to injury and get your shit together BEFORE you need to.

DO IT. NOW.

Check this out, it’s all wrapped up for you with guides and checklists and shit. I’m even going to put this on the sidebar.

Get Your Shit Together.com

I love you. Get your shit together. And I will, too.

Too private.

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“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.

Spoiler Alert: #everyonedies

tragerstreit2 Comments

Today’s post comes with story time!

Story one:

I’m walking with the cane into the cafe. There’s a girl who works there that I smile and say hello to practically every day. She notices the cane, today. I don’t always bring it down when I get a drink, but today I have. I’m a little wobbly, anymore.

“OH no, did you hurt yourself?”

“No,” I shrug, “I have Lou Gehrig’s. I’ve just gotten weak enough finally that I need this a lot.”

“Oh, god, I’m sorry, I’ve heard of that. Is it painful?”

“Oh no, nothing hurts, really, but it’s just a loss of strength over time. I guess that’s a good thing, nothing hurts even if you ARE dying slowly,” I half-joke.

“Well aren’t we all,” she smiles back.

“Truth,” I tell her, and we part ways.

Story Two:

We’re walking to a restaurant, my coworkers and I. We parked kind of far away, and I’m struggling a little with my cane, to keep up with the crowd.

“Keep up,” he jokes, falling behind to walk next to me.

“I’m trying,” I tell him, grinning. “Y’all bastards walk too fast.”

“Well maybe you’re not trying hard enough to keep up,” he teases.

“Yeah sorry, everything’s slow with me. Neurons burning out, walking, you name it. I’m *sorry* I am slowly dying,” I joke.

“Well, everyone’s dying,” he shrugs.

“Some of us just take the fast track,” I tell him.

The Rant

Please, please stop saying “well technically everyone is dying”.

Please.

It’s like when the cashier is ringing up your stuff and something doesn’t scan and you snort, “well I guess it’s free.” It’s a dumb joke, everyone’s made it, she’s heard it a thousand times. And it’s already old and it wasn’t funny in the first place and you’re not that clever, just pay for your shit and leave. And you know it’s a dumb thing to say, but you said it anyway, and will say it again, but everyone politely laughs even though no one thinks it’s clever.

Only, …no. Okay. It’s not really so much like that. It’s..

It’s dismissive as FUCK is what it is. Yeah, okay I get it, everyone is dying slowly. We are all biding time until our own demise. Everyone, eventually dies. MEMENTO MORI.

When you tell me, “yeah well we’re all dying, right?” I know you’re trying to soften the blow. You’re trying to comfort me in a way, to include me with the rest of the human race, telling me that death is normal and it’s okay. To make light of the situation. And I will always, always joke back.

But I don’t want to.

What I WANT to say is “fuck you”. You’re completely dismissing my death. You’re diminishing the sadness of my struggle. You’re telling me that I’m nothing special, that my disease is no big deal. Everyone dies. So what? My disease will kill me but hey, everyone eventually dies anyway so what does it matter? What do YOU matter? What are you whining about? Everyone dies, so what.

So what? Yes, everyone dies. But YOUR book has a billion potential endings. Boating accident! Heart attack! Cancer! Pneumonia! Peacefully in your sleep with your loved one by your side! Gun accident~! You could die of ANYTHING! You could die during sex! You could die from mountain climbing and being exposed to the elements! You could join an international drug cartel and be gunned down on the private air strip in Boca Raton when Louie rats you out! You NEVER should have trusted Louie! You could fall on the sidewalk and hit your head JUST SO and become brain dead until your tearful mother signs the paperwork and they pull your plug. Choose Your Own Adventure Death! If you would like to die of accidental CO2 poisoning, turn to page 56!

My Choose Your Own Adventure book has three possible endings. A long, lingering loss of ability and strength, humiliation, frustration, and fear that ends in…..

OPTION ONE! Sudden accident. I mean, anyone can get hit by a car, randomly, or some freak accident, lightning strike, store robbery gone wrong. Anything could unexpectedly kill me. We’re even on that front.

OPTION TWO! Suffocation! I choke on my own spit, unable to breathe because my muscles have all atrophied and I can’t swallow or take a breath and eventually I choke to death. Drowned in my own spit.

OPTION THREE! Suicide! I decide somewhere along the story that I’ve had JUST ABOUT ENOUGH, thank you, and take some pills if I can still swallow, or push the meds into my guts via feeding tube.

THAT’S IT. Those are my options. Your roadmap to life has a lot of lingering little trails and you never know where they’re going to take you. You might decide to become a mountain climber at 60, you might die tonight, you might waste your life away at some meaningless job until you have a heart attack at your desk. Your maps are open and wide and the ends aren’t known but the possibilities are endless. My map branches three ways, and there are many many stops along the way. Loss of walking. That cuts off a thousand roads. Loss of hand/arm movement. Well there’s a ton of other destinations crossed off my map. Unable to eat. Well that’s a lot of stuff closed off to me, what with the wheelchair and the feeding tube and hell, you need a special van to travel now, you can’t just pick up and go. So my destinations are the trauma ward, a palliative care hospital bed, or a dose of pentobarbital in a place of my choice.

We’re all dying. Some of us have our stories written, and the endings are not happy. There is no happy ending for ALS. And when you compare your unwritten book to my Cliff Notes, it’s insulting.

Your story probably does not have chapters in it about falling for absolutely no reason and getting a really horrible looking scratch out of it but not allowing yourself to show pain because the people you’re with are freaking out that you fell and you have to assure them you’re okay. It probably does not feature you cleaning out a cat box and breaking out in a sweat over that small, stupid effort. It probably does not feature a feeding tube or respirator as a given course. It likely does not have six introspective chapters, each titled some variation of HOLY SHIT I AM GOING TO DIE IN A REALLY FUCKED UP NIGHTMARE WAY AND I KNOW IT’S COMING. Your story might have a little chapter about being embarrassed in front of someone when screwing up something you were trying to say, but I doubt it has six paragraphs afterwards wondering if that was a one time fluke or is it a sign your tongue is starting to atrophy too? Did I enunciate when I was on the call with my manager earlier? Is this guy saying ‘what’ because he didn’t quite catch what I said or because I have lost the ability to speak and he literally has no idea what I just said? Your book has going to work and going shopping, but does it have a pre-chapter about managing a ride that isn’t going to be too hard for you, or not purchasing #thing because you’re not sure you can lift it up in the cupboard where you’d like it to go? Your story’s ending is unwritten. Mine is written in stone, carved by hands that no longer have the power to pick up a chisel.

Telling me “everyone dies” is the same as co-opting #blacklivesmatter into #alllivesematter. You’re technically correct AND YOU ARE COMPLETELY MISSING THE POINT. And diluting the original message with your vapid need to be included. Of COURSE everyone dies. Of COURSE all lives matter. BUT THAT IS NOT WHAT WE ARE TALKING ABOUT RIGHT NOW. You are dismissing the message and selfishly, HORRIBLY, turning the story about you. In telling you that I am dying, I am not saying no one else dies and no one else has to mourn. I am not dismissing the value of your mortality. I’m not denying your story has an end. I’m telling you mine is brief. As someone put it, by saying “save the rainforests” I am not saying “fuck all the other kinds of forests, they’re deserving of destruction”. By saying black lives matter, it’s not to say others DON’T. To say that I’m dying is not to say that you aren’t.

It’s the same, also, as when you tell a friend your woes and s/he says, “That’s okay, I lost my job today.” IT IS NOT OKAY. YOUR PAIN DOES NOT DIMINISH MINE. You have a right to your suffering, and it does not trump or cancel out anyone else’s. People will often try to one-up your sadness, and I’m guilty of doing this too, sometimes, and it’s a horrible, horrible thing to do. I don’t understand what the point of it is. I see your suffering and raise you “my keys got locked in my car”. Your pain doesn’t matter, because I have a completely unrelated circumstance that I somehow have determined is more impactful than yours and therefor I am suffering worse and I WIN at the FML game! And LOSE at Friendship and Human Interactions! And I leave with a parting gift of making your situation worse by dumping all over you when you wanted comfort from me! I’m going to put that statement again in its own line, because it’s important.

YOUR PAIN DOES NOT DIMINISH MINE.

We are all dying. Some of us just know the way. And if you don’t, then I’m happy for you. Seriously. I rejoice with you in not knowing your end. It’s an amazing, free world of possibilities and I’m delighted you get to dance in that sunshine. I will read my own story, and dance as long as I can, while the rain comes, before I’m washed away. Both of our stories are fantastic pieces of literature, but because I got a sneak peak into the last chapter, it doesn’t make my book any less worth reading. Your book’s unknown end chapter doesn’t make your book better than mine, or different. And when I tell you the plot, you don’t have to tell me that EVERYONE’S story finishes. Because of course it does. I was just trying to tell you about mine for a second.

And I joke about it, because it’s a sad thing and I try to keep things light; but I want you to know that it’s crushing when you dismiss me like that. Everyone dies. Yes. This is an unfortunate fact. A fact that does not change that I have a terrible disease and I’d like to be able to talk about it without it being diminished to a non-problem by the words “everyone dies”. You don’t need to one-up this. You don’t WANT to one-up this. It’s okay. Just say ‘sorry’ or shrug and agree, or laugh with me about it, or tell me to man the fuck up, tell me anything but that I am insignificant because of course everyone dies. And none of this matters. Because I fucking matter. If I didn’t, you wouldn’t be wasting your breath to piss me off with those words.

Everyone dies.

Some of us have a story they’d like to tell, before that happens. Not because they think it’s the best book. Not because they don’t think you have one, too. But because they think it’s worth reading. So, thank you for reading mine, so far. I hope it’s been worth it.

Everyone dies, but I guess not everyone gets to blog about it, yeah?

Assistance

tragerstreit11 Comments

(Okay, sorry, it’s been a long time but I knew this post needed to be next and it was really hard to think clearly about. For reasons that will become very clear. This post won’t be a happy one, I wager.)

There’s a chair, a table. The table has three prescription bottles on it. The chair is draped with colorful striped fabric. She enters the screen, sits calmly, and smiles warmly at the camera. She picks up one of the bottles.

“I got my prescription today, to end my life when I see fit.”

She says it with a little difficulty, but it’s ALS, not emotion, that makes it hard to talk. She’s calm. Confident that she’s made the right choice. Beautiful. She explains she’s not going to take it, not today, because life is still too good. She thanks everyone for supporting her decision to choose. She has bulbar onset ALS and while she’s lost the ability to swallow anything, she can still speak; which is good, she says, because she has a lot to say. She puts the bottle on the table, and she tells her viewers how much she loves them all.

She glances at the prescription bottle on the table, almost lovingly, and faces the camera. Her warm smile brightens her face again, she is serene. “It’s a good life,” she says. “Live it.”

______________________________________________________________________

Assisted suicide. Death with Dignity. Voluntary Euthanasia. It’s an extraordinarily controversial topic. It’s something I’ve had strong opinions on ever since I heard of Dr. Kevorkian. It’s something I’ve thought about a lot since ALS became a possibility for me, and it’s been on my mind almost every day lately thanks to Brittany Maynard.

If you’re not familiar, congratulations, you’re probably one of the five people who’ve escaped this story. You can read it here. The short version is, she was diagnosed at 29 with terminal brain cancer, was told she had months to live and an excruciating death waiting for her. So she chose to end her life under her own terms. She openly talked about how she would do it, and knew exactly when. November 1st, she took her medication and died.

It’s polarized the world it seems. Everyone has an opinion. She had the right, she did not. She was choosing to die with grace, she was a coward committing suicide. She was strong and brave, she was thwarting God’s plan for her. Opinions were very strong, debates were very heated, and theoretical relatives were killed daily in debate, by agonized suffering or suicide, and everyone thinks they know what is best. And everyone – EVERYONE – had something to say about it.

And maybe some day someone close to you will need to decide on this option. Maybe an aunt with cancer. A father who gets into a terrible accident with injuries incompatible with life. Or God help them, someone with ALS. If they live in a select handful of places, they will have this option to choose. They will have this conversation several times with a medical professional. And if they choose to die, they will pay an obscene amount of money for a prescription to die, because it is OH MY GOD EXPENSIVE and insurance will not cover it. (Which is stupid, really, you’d think the insurance company would pay YOU to stop costing them so much.) But they get the prescription, and maybe they take it, maybe they don’t. Whatever side of the fence you’re on, whatever opinion you have on the subject, allow me to make one thing abundantly clear for you.

YOU GET NO FUCKING SAY IN THIS DECISION.

Absolutely NONE.

There is no debate. You get to sit the fuck down and shut your face when that person makes that decision. If they ask you how you feel, fine, but know that you do not get ANY fucking say in what they decide. You can have all the arguments in your head that you want. But if someone makes the choice to die, and their doctor agrees? Then it’s done. You have no right to interfere with it. At all. Keep your opinions. Honor their decision. If you disagree, fine, but know that it makes LITERALLY NO DIFFERENCE.

Comfort them in their last hours, support them until their final days, and keep your goddamned opinions to yourself.

_______________________________________________________________________

I was 24 when Jack Kevorkian came into the public’s eye, when he was arrested and then later sentenced for murder because he’d helped terminally ill people to die. “Voluntary euthanasia” they called it then, in all of the court reports and news articles. Now it’s more bluntly called “assisted suicide”. They mean the same thing, but ‘assisted suicide’ has more of an accusatory feel to it and so that’s what people call it now – because Society Does Not Approve.

“It goes against God’s plan,” is the most used argument against it. “This happened for a reason and you are giving up.”

“It’s Death with Dignity,” is the most used argument for it. “It’s a humane close to an inevitable ending.”

And even then, as these two sides yelled at each other and called each other “murderer” and “sadist”, my 24 year old self thought about it with a calm heart and careful deliberation. “If I were ever in great pain and going to die eventually,” I decided, “I would want to kill myself. I think people should have the right to die on their own terms.”

And my 38 year old self thought about it with the same calm and deliberation. “If this turns out to be ALS,” I decided, “I want that option available to me.”

And my ten-days-away-from-being-39 year old self stared at the carpet for a moment, letting the diagnosis wash over me, and I thought about it with calm and deliberation. ” I’m really, really happy that I live in a state where it’s legal. I need to figure out what is my breaking point so that I can get the process started before it’s too late.”

________________________________________________________________________________________________________

Spoiler Alert: I’m going to get that prescription. I am very probably going to take it.

And you know what? There’s not a MOTHERFUCKING THING you get to say to me about it. This is MY choice. This is a step *I* will take if I want to. I know what’s best for me. I know how much I can handle. You don’t. And you don’t get to dictate to me when I can die.

I already know how my story ends. I’ve seen the last chapter, and it’s terrible. I want to be able to close the book before it gets that far. It’s a shitty close to a pretty good story, otherwise. “Died happily, surrounded by loved ones” is a much more kickass end chapter than “died slowly, suffocating and starving, languishing in agony at not being able to interact with those she loves while watching them steadily stop coming by and trying to talk to her because it was sad and awkward”.

You DO have the right to think and feel anything that comes your way. Even if it’s the bullshit idea that “this is God’s plan” which I will NEVER, EVER ACCEPT. If it’s in God’s plan that I should die like this, then God is a jerk. I don’t believe God hates me this much; I just believe that shit happens. And this sucks. And it’s no one’s fault. And that’s okay. There doesn’t need to be a plan or a reason for this. But if you feel there’s some proper reason for this, that’s fine.

I would never dictate to you how you should feel. It’s not my right, and not my place. Your opinions and your feelings are as important to you as mine are to me. Even if you disagree with me, it is entirely your right. I might debate you on logic, but I can’t and I won’t debate you on feelings. I respect your right to disagree with my choice, but that does not give you the right to interfere with it.

I would never presume to tell you how to feel, because I can’t know. But I will tell you not to presume to know, because you can’t feel.

You’re even welcome to share your thoughts and feelings with me. Just know that it’s going to make absolutely NO fucking impact on my choice.

I don’t know what my breaking point will be. It sort of shifts around, some days I think I can live with things that I can’t fathom, other days. And it may well turn out that I don’t think it’s really all that bad, even at the end. It’s amazing what you can get used to, if the change is gradual. I may think that spending my entire life having ten minute conversations that consist of three words is okay, that being an active brain in a meat shell completely at the mercy of everyone around me is a perfectly decent way to live.

I currently think I probably want to die before it gets that far. The last thing I want to leave is an impression of being a burden. Even if it’s not true, I know that I will start to feel like people are resenting me for being useless, that they’re tired of me taking so fucking long to get anything across with my stupid little eyegaze tablet. Even if I know it’s not true – and I do, I know that I’m loved and people would happily shoulder me for as long as I need them to – I know I will feel that way. Because I know me better than anyone. And that might be harder to bear than the humiliation of having my diapers changed. That WILL be harder to bear.

Some days I think that my mind is active enough, I’m solitary enough, that I’d probably be okay to be so isolated, as long as I have a sliver of communication.

Some days I think, when I’m no longer able to eat.

Some days I think, when I can no longer breathe on my own.

Some days I don’t think about it at all.

I just know that I need to do it, if I’m going to, before I’m no longer able to do it on my own. You have to do it yourself. And even if it’s someone putting the meds in a feeding tube and putting your hand over the syringe so the weight of your hand pushes the meds into your stomach, it has to be you. Which is right and proper, because I could never ever ask someone, “Will you help kill me?” Even if I have people who love me enough to be willing to go that far to help, I would never ever ask someone to carry that burden. It has to be under my own power.

And it could very well be that I’ll get that prescription and never use it. I’ve been told that many more people get it than use it. And that’s okay. But I want the choice to be mine. And I want that option. I want that right, and that power. That decision belongs to me.

And when I die, be it by time or by chemical, you guys can do whatever you want to celebrate or mourn me; throw a party, get drunk, burn my sticker collection. My funeral will be for you – but my death is all about ME. You can decide to celebrate or curse me however you like when I’m gone, it makes no difference because I’ll be absent. And you can celebrate or curse my choice, and it makes no difference, because you’ll be absent. It’s the last and most intimate experience anyone ever has on this earth, and it’s personal and private. Sacred. No one can encroach on that space. No one should ever think they somehow get the right to think they can tell me how to die.

You only get to decide for yourself whether you take my decision on death with dignity.

Updates Needed! ZoMG

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Hello babies! I owe you storytime for a LOT of things. I will get to them this weekend! Probably!

I need to tell you about:

The walk!

Passport Drama!

Neuro Checkup!

New Meds!

Elder Care Attorney Appointment!

Probably Some Other Stuff!

My job has been absolutely CRAY CRAY so I haven’t even had time at lunch to update this. Bleh! I am still here though! And I love you!

Spin on

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I was introduced this week to a comic called Spinnerette. You can read it here. It’s a pretty fun send-up of superhero comics and usually pretty goofy – a fun romp of a comic. I’m not finished with the archives yet, so I can’t give you a complete opinion, but it’s well drawn and occasionally funny.

The reason it was recommended to me, though, is that one of the main characters has ALS. She built a robot suit so that she can use what time she has left to fight crime, Iron Man style. I halfway expected to be vaguely insulted by how they treated the disease, but she’s actually pretty matter-of-fact about it, and the reactions of people around her are pretty faithful. She’s not her disease, that’s not the point of her character. It’s her motivation, but not her reason to exist. I like that a lot.

Similarly pretty accurate is the reaction when she tells the plucky heroine that ALS is degenerative, and she only has a few years to live.

http://www.spinnyverse.com/index.php?id=87

And you can just..feel her frustration. The main character is more sensitive about this woman’s ethnicity than she is about her disease.

This is exactly how not to react when someone tells you they have ALS. Or any other disease for that matter. Please don’t do this. It is REALLY REALLY frustrating. You think you’re being all chipper and optimistic, but you’re really just sticking your fingers in your ears and going LA LA LA LA LA. You’re in denial and it’s really hard to be around you. You’re telling us that we can’t be honest with you when we’re having a bad time. You are obligating me to put a happy face on my hurt for your comfort, and fuck you for that.

ALS isn’t all shit, all the time, but sometimes it really is awful and we should be allowed to be up front about it. Allow us to break the news that YES, this is FATAL. And then let us be okay with that, and help you come to accept it, too. And when you accept how horrible it is, you can truly appreciate how marvelous the rest of it is, most of the time.

…Now where’s MY mech suit, dammit.

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

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(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!

7!

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.

“Put a Smile on It!”

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“…Put a sock in it!”

I’ve been pretty damned whiny the last couple of days because I’ve developed shingles. Which, if you’ve never heard of it, is FUCKING AWFUL. It sounds all happy! SHINGLES! YAY! There’s probably confetti involved! But it’s basically a really horrible version of chicken pox, which can happen to anyone who’s had it; the virus lives on in your body and randomly it may decide to reactivate. Only instead of the red itchy bumps all over, it’s a really angry, blistery rash and searing pain in half my body, fever, nausea, and muscle aches. It’s like the worst sunburn you’ve ever had and the flu at the same time. I am the queen of high pain tolerance – I’ve had dry socket and never even winced when the dentist packed it with that nasty gasoline and cloves shit – and this has had me whimpering and writhing. I had oxycodone left over from the muscle biopsy; I took one last night just so I could get some fucking sleep.

It really fucking sucks. And I’ve NOT been shy about saying so. Because I am goddamned miserable. And while it happens completely at random, one of the things that MAY trigger it, is stress.

Okay, so ALS causes stress. But the actual disease has been the LEAST of my worries the last couple of weeks. I had to put down my cat, Midori, after living with him for 19 years. HALF OF MY LIFE. It was emotionally devastating. I adopted a new kitten, which is a happy stress, but a stress nonetheless. I gave a talk in public which triggered all KINDS of nervous stress. I attended a party full of strangers. There WAS my first Clinic session, too, and the resulting “…goddamnit” of beign assigned a cane and a breathing exercise, but seriously? ALS is the least of my concerns right now. Real life is happening.

And so today, when I posted a tongue-in-cheek: “I’ve figured it out. I have shingles because I’ve been telling people how lucky I am that ALS doesn’t hurt! hahahahhahaawww sad trombone” I didn’t really think a whole lot about it. I had just been enthusing Tuesday afternoon after the ALS talk I gave that it was AMAZING that nothing hurts and how lucky I am. The timing struck me as funny, was all.

But then I was told that I need to cheer up. If I just keep a good mental attitude, I might be able to beat ALS. Just..buck up! ALS won’t kill me if I just think happy thoughts and don’t let it!

Okay. this is important, so I’m putting it on its own line. In bold.

Positive thinking has never accomplished a documented medical result.

NEVER NEVER NEVER. It is not going to cure depression, it is not going to cure a broken leg, it is not going to fucking cure ALS. And I DO have a positive outlook, and I really DO believe things are good and somehow everything is going to be okay, somehow. ALS is not my life. I am not All Disease, All the Time. That’s just not how I work. But having a sunny disposition is NOT going to cure me. I am dying because my motor neurons are burning out. No amount of laughing is going to keep me breathing. No amount of happy thoughts are going to allow me to continue to put my face in a smile shape when my facial muscles stop working.

A positive attitude dictates HOW I have the disease. It does not dictate IF I have the disease.

A cheerful disposition means I don’t lose friends by bringing up ALS and how I’m going to DIE in every conversation and make myself miserable to be around. It means I continue going to work and don’t wallow in self pity while I cease to be able to afford my mortgage because disability is a fraction of my usual pay. It means I keep going as usual. I continue to live my life, as normal, and don’t become a burden to be around, even to myself. It means not every waking moment is filled with terror and “JFC I AM GOING TO DIE WHAT IS THE POINT OF ANY OF THIS SHIT”. It means when someone invites me to visit them in a years’ time, I say “that sounds lovely!” instead of “I don’t think I can, I’ll probably be in a wheelchair by then.” It means “I’ll try” instead of “I can’t.”

And the occasional whining is to be expected. There are aspects of ALS that fucking SUCK. That whole…”you’re gonna die sooner than you thought” is pretty shitty. No longer being able to dance, sucks. Having to take five minutes to haul your laundry up the stairs sucks. Realizing that you forgot something downstairs and having to think long and hard about whether it’s worth the effort to go back, sucks. A stress-induced searingly painful fevery rash of DOOM sucks ass.

And I am fucking allowed to complain about these things. CENTER CIRCLE, BITCHES.

It does not mean that there’s nothing more to my life. The new kitten does NOT suck (except when she jumps up on the bathroom counter and knocks over a glass that shatters allllll the fuck over my bathroom floor). The fact that I am still able to work does not suck. Birthday cake Oreo cookies do not suck. Friends who are willing to help me get wherever I need to go do not suck. The good far, far, far, FAR outweighs the bad. All the time. And always will.

But knowing this, and having a fantastic attitude towards life, the universe, and everything, is not going to save me from an early death. And that’s OKAY. I’m alright with that. It doesn’t mean there’s no point to having a good mentality, it just means it’s not a cure. You *can’t* cure this disease. All you can do is treat the symptoms. And a good goddamned attitude is an amazing restorative.

In the meantime, you’re essentially telling me to just put a superficial happy face on a horrible and serious fucking situation, and that’s selfish. All you’re really telling me is that I can’t turn to you when I’m in a low spot. You’re making me resent you because you’re negating my frustration. You’re telling me I’m not allowed to be unhappy.

You’re telling me that it’s *my own fault* I’m dying because I’m just not happy enough.

And that is COMPLETE FUCKING BULLSHIT.

Being a Force for Good

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I have committed and embraced the Walk to Defeat ALS in Portland. This is a thing. It’s happening. As my team is called The Godzilla Squad, it was suggested (jokingly) that we could all get these:

RAWR
Godzilla REPRESENT

I thought that was basically the best thing ever. I said I TOTALLY needed that. Though, that thing is like $75 and I didn’t really mean that; hahahah how would I justify affording that, no matter how awesome it was? Someone suggested that we make them our team costume, which I agreed would be awesome and hilarious. And then my darling friend Leendah said, “How many do you need and when?”

…I had almost forgotten that Leendah is a kickass costume designer in real life.

Long story short, she is making dinosaur hoods and hoodie sweatshirts for my team at cost.

And the amazing kept happening. People I have not seen in literally a dozen years have signed up to walk with me. My friend Marina not only donated to the walk, but offered to sponsor two people walking with me who wanted hoodies but couldn’t afford the $50. My team is already 8 people strong and has raised $450. That’s….amazing. Seriously, seriously amazing.

There are going to be two talks here at Intel, to recruit for the walk and to just flat out solicit donations, and I’ve agreed to speak at both of them. I am apparently the only person with the disease (that the ALS Association knows about) who currently works at Intel. It’s one thing to say “please give us support in the name of this guy who used to work here and has died”, but it’s another to say “Hi. I work with you guys. You might have seen me in the halls, even, I’m kinda stand-outy. I have this disease, it sucks, please give us a hand.” I’m hardly a Fundraising Warrior or anything, and I’ll never be a marketer even for this – I’m not built for it at all. But if my voice can help out, then I’ll use it towards this goal, while I can.

Tomorrow, for our team staff meeting, I asked my manager for permission to tell the team about it and see if any more of them wanted to join me. I’m not really asking for money, and it won’t cost Intel anything, so he said okay. I’m nervous about it – I’m not good at asking people for something, as I’ve said, but I also realize that for a fair few of them, it will probably be the first time they’ve heard about my disease. And that I have it.

So THAT will be interesting. I am hoping it’s a positive experience with a minimum of awkward.

This is not at all how I imagined my life would turn out to be. But I have to say, I’m not entirely discontent. Some fucking AMAZING people have come out of the woodwork, and my disease has given me some unique opportunities and put people in my orbit that wouldn’t have been there otherwise. I’m really very grateful.

As usual, babies, I’ll tell you how it went, tomorrow.

Fuck You and Your “It’s going to get worse”.

tragerstreit6 Comments

Okay so wow.

https://www.facebook.com/fox12oregon/posts/10152550068903701?comment_id=10152550463373701

I KNOW BETTER THAN TO READ COMMENTS ON THE INTERNET. I KNOW.

But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.

Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.

But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.

Making Video about Audio

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I’ma geek out for a minute about voice banking. Ready? Here we go.

Voice banking is one of the most amazing things to happen for people with ALS, or any kind of degenerative disease that robs someone of their voice. Model Talker allows you to record your own voice, from which they’ll make a synthetic version for use with a text-to-speech program. It effectively lets you “talk” with your own voice, after the disease takes away your ability to speak.

It’s amazing and important and I’m SO GRATEFUL that it exists and that I’m allowed to participate in it. It’s currently in beta, and anyone can apply to be a part of it. ModelTalker is a program you install on your computer, and then you record yourself saying prompted phrases by speaking into a USB microphone headset. It’s best to bank before the disease hits your voice, so that your computer generated voice is as true to your natural voice as possible; so the sooner people with ALS know about it, the sooner they can start banking. It’s a fairly sizable time commitment – I understand there’s about 1600 phrases to record before they have enough sounds to create your voice from. The sentences I’ve seen so far include lines from The Wizard of Oz, and the phrase “There’s more than one way to remove a tooth.” I’ve only just started; I recorded the calibrations and the first ten sentences last night. They’ll listen to the samples, and suggest changes, and then I’ll record the next set. I will be sitting at my desk and recording goofy sentences for hoooouuuuuuuuurs.

But it will be TOTALLY WORTH IT, when my computer generated version of me calls someone a fuckwit for the first time.

This technology is SO IMPORTANT. It’s completely dehumanizing, being unable to properly communicate with others, and that idea frankly scares me. The fact that speech synthesis exists at all is fantastic, don’t get me wrong, but we need to take it a step further. Just look at Dr. Hawking, his voice..it’s become a joke, how robotic his communication is. To have to rely on a robotic voice to tell someone you love them? To try to explain to your loved one why you’re crying with this…fake, cold, not-really-a-voice? That is the worst thing, and I can’t even imagine the stress that adds to an already horrible situation. ModelTalker gives you back some semblance of who you were, to continue to be who you are. It gives you back a little bit of what this stupid fucking disease takes away from you.

I was contacted some weeks ago by my local chapter of the ALS Association wondering if I would like to be part of a local news story about voice banking.

I said yes, please.

They’re going to come to my house next Thursday and film me doing some recording, and then interview me about it. I’m really happy to have the opportunity to evangelize about this technology, to let people know it exists, and it’s out there for free. Technology is solace for people with ALS. It helps us travel when we can no longer walk. It helps us communicate when we’ve lost the ability to speak.

It helps us continue to be human, for just a little bit longer.

Can We Talk About This?

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Avoiding a problem is never useful.

It’s not true that avoiding a problem won’t make it go away. It WILL go away. And you’ll have no control over how it ends, and that will be entirely your fault. If you don’t talk to a loved one about their alcohol addiction, eventually it will kill them, or ruin their life, or continue to make you miserable until you leave. If you avoid thinking about how you can’t pay your rent, they will evict you and then you won’t have to pay rent anymore because you’re homeless. If you avoid dealing with those chronic headaches, it will eventually go away when that aneurysm bursts in your head and you die on the toilet.

If you avoid letting a loved one talk to you about advance directives and worst case scenarios, they’re going to exclude you from those decisions.

I have had the worst time trying to talk to my family throughout this mess. Although I am optimistic by nature, and always believed (errantly, it turns out) that it was going to end up being no big deal, I wanted to have that conversation with the ones I love. Just in case. I would very much have rather had a talk, “I am undergoing tests to find out what the problem is, it may be nothing permanent, but in case it IS, can we talk about what we’re going to do about it?” and then calmly discuss the options as theoreticals and whatifs. It’s easier to imagine making a house wheelchair accessible when you know it isn’t a certainty, because you can look at all of the angles, the practical points, without spiraling into depression because you’re picturing me in that wheelchair already.

I’d much rather tell you when it’s theoretical, than to have to have the conversation be, “I’ve been diagnosed with ALS. This is terminal, and I need to set up an advance directive, and I want to talk to you about that.” Because now you’re freaking out at me – I’ve just told you that I’m going to fucking DIE. And so instead of a theoretical situation, it’s a very real one, and now I have to tiptoe around you flipping the fuck out while I’m trying to tell you to just fucking let me die when I stop breathing on my own. Instead of a calm rational talk, I feel like I have to console you and calm you, when you should be helping me plan the end of my life.

I NEEDED TO TALK TO FAMILY ABOUT THIS SHIT TO MAKE SURE YOU FUCKERS KNOW WHAT I WANT IF THE WORST HAPPENS AND I WOULD RATHER HAVE HAD THOSE CONVERSATIONS *THEN*.

THEN, while they were theoretical and potentials. Instead of attached to a definite prognosis with a finite lifespan, because I wanted to have this conversation WITHOUT you going through your own grief at me while I’m trying to get things squared. I’m trying to tell you how I want to die and when, without having to watch you come to terms with my terminal diagnosis. I needed you to start preparing for that idea THEN, when it was “IT MIGHT HAPPEN AND I WILL NEED YOUR SUPPORT WITHOUT YOU FREAKING OUT ON ME.”

I’d rather have a talk “Hey guys, I might have ALS or something similarly deadly and terrible, so I’d like to talk about what happens if that’s true, but it might not be that at all” and deal with possibilities and still have hope, than “I have ALS, I have maybe 2 years to live. Here’s what I want.” and then have to deal with the wailing and gnashing of teeth and watching them go through the 5 stages of grief all over me.

You must be at least THIS CALM to go on this ride.

Also not helpful? Switching on Christian Mode. It’s another form of denial. “We will pray for you. God will fix this. God is more powerful than anything and he will heal you.”

Okay, but what if He doesn’t? What if, in His infinite wisdom and grace or whatever, He decides I need to die? You don’t fucking know. If all things happen for a reason, then He gave me ALS for a reason and faaaaaaiiiiirly sure it’s not just to fucking cure me of it later. So, pray for me, sure. Yes, please. But also help me plan.

“Our God is powerful and he will fix this” does not figure in to an advance directive.

“Does…she want to be resuscitated?”

“GOD WILL FIX THIS.”

“…She’s flat-lining. We kiiiiiiinda need an answer to that question right now. Does she have a DNR form?”

“SHE HAS FAITH IN THE LORD JESUS OUR SAVIOR.”

“Well, she’s about to meet Him.”

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

My mother – and I love her a lot – had her own brand of denial going. When I first started talking about my problems walking around and how I was starting to get medical help for it, she steered the conversation towards ANYTHING else. And when we started to narrow things down, I wasn’t allowed to admit out loud to her that it was possibly ALS:

Mom:
there are always cons. So they haven’t ruled out ALS yet? What’s wrong with them?????

Me:
oh no, it’s still like a 50/50 chance that it IS ALS.
still VERY much on the table

Mom:
well, it’s NOT.

…And then later in that conversation she told me she was jealous of my medical problem because at least nothing HURT, which is more than she could say for herself.

…I don’t think she’s jealous anymore.

My mom’s not the only one, of course. I’ve been forbidden to die by more people than I can count. “You’re not allowed.” Which, ha ha, yeah it’s cute, but when I’m trying to tell you HEY I AM NOT GOING TO BE AROUND FOR A LONG TIME LIKE WE THOUGHT SO CAN WE THINK ABOUT WHAT NEXT? I need you to have that conversation with me.

The moral of the story is this. It’s an all-purpose statement. When someone you love is going through some serious shit and they are trying to talk to you about it – if you love them, you OWE IT TO THEM TO LET THEM TALK. And you owe it to yourself to participate in that conversation.

Because if you don’t participate in the conversation, you forfeit the right to participate in the decisions.