Inappropriate Friends are the Best Friends, Part 3

February 19, 2015February 23, 2015 tragerstreitLeave a comment

Danielle: I think you should be cremated with all of your stickers. Random thought of the day

me: that’s a LOT of cremation material

Danielle: ok, maybe just some…you can designate your fav binders. all the halloween ones

me: burn my cat stickers, my Lisa Franks, and the halloween ones hehehee

Danielle: hehehee there ya go

me: though that’s the majority of them, I think

Danielle: I was thinking that, yes

me: maybe just sticker my corpse and call it good

Danielle: Oooo it’ll be a wake game

me: hehe see?

Danielle: that was bad

me: Pin the sticker on the Vashti!

Danielle: hehee not entirely ashamed hahahaa

me: Give everybody penny stickers and if they can get them on my eyelids, they win!

…and then, because we’re not TOTALLY horrible people, we discussed her excellent idea of maybe donating my stickers to local teachers.

Beautiful Kitten Fish, Sleep Baby Sleep

February 12, 2015 tragerstreitLeave a comment

I have a very romantic weekend planned. While everyone is eating expensive dinners and watching 50 Shades of Sexual Assault this Valentine’s Day, I will be having my second sleep study. We’re going to try me on CPAP as I’ve said before, and it’s likely I’ll get one of my very own. It’s better than chocolates and roses any day!

…I should note that Valentine’s Day means nothing to me at all. Lest you think I’m actually bitter.

I will call the pulmonologist and make an appointment today, they’ll want to know the results of the study before we get started with equipment and everything. I’m hoping it all helps with the exhaustion and whatnot, I’ve been having a REALLY hard time waking up this last week or so. It might be the med change; we’ve upped the dose of Adderall from 10mg to 20. I don’t know that it’s doing a better job than the Nuvigil did, honestly. But we’ll see.

Sleep’s been kind of elusive these days, but that can be written ENTIRELY off to stress. I’m packing for real, now, and going through things to give up for the garage sale. It’s three times as difficult as it should be – I have to fight my inherent laziness, the high cost of physical exertion that ALS brings, and it’s just..SAD. It’s depressing as hell to go through my things with this air of finality. It’s moreso than the usual “Meh, I don’t need this” when you move, it’s “I will probably never have another use for this at ALL and I don’t want someone else to have to deal with it when I’m dead.” So it makes me tired and maudlin and my brain won’t stop even if I’m physically tired. I have a ton of people on standby who will help me pack if I ask, but they can’t go through my things for me. That’s my sad and lonely duty.

Also, I’ll be honest, the thing with the news article about my work and ALS has stressed me right the fuck out. And that conversation continues on my work’s internal news site.

Work stress, too, was about ALS recently.

Life seems entirely about the stupid disease lately, and it’s all stressful, and it’s really hard sometimes to not just curl up and sleep and avoid it all for awhile. I just don’t have the time to indulge in that. It hasn’t beaten me, not by a long shot, I still know everything’s going to be just FINE, goddammit, but it’s harder right now. It’ll calm down and be okay in a bit, but all I see for awhile is deadlines and packing and expenses and pressure. And while I’d like to just sidestep all that, and play Skyrim instead, I know I can’t, and it will be so much worse for me if I even try.

And so I will continue to work, and pack, and sort, and not sleep very well, and spend too long in the mornings lying in bed and snuzzling my cats instead of getting up and getting dressed for work. For now. For awhile. Not forever. There will eventually be an end to the work, and most of this stress, and I’ll be allowed to properly sleep.

Bloop bloop bloop bleep bleep.

No Comment.

February 8, 2015 tragerstreitLeave a comment

My local news did a story on a theoretical link between my employer and ALS. I declined to be a part of the story.

After seeing the report, I am certain I made the right decision to refuse to be a part of it.

They used my photo without permission, which is really annoying.

That’s all I have to say publicly about it.

Learning New Can’ts.

January 20, 2015 tragerstreitLeave a comment

Every day is a voyage of discovery.

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

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

Lessons learned.

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

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

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

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

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

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

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

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

It can’t happen any other way.

Crying for the Right Reasons

January 9, 2015January 12, 2015 tragerstreit1 Comment

I have probably thought about this entry a hundred times, and started it a dozen. I don’t even know where to begin except to state that I am beyond privileged, and indebted to total strangers at a level I never even dreamed. I don’t have the proper words to put down what’s in my head, to write and entry that isn’t just:

omigodomigodomigodomigodomigodomigodomigodomigodomigodomigodomigodomigodWHHHHHHEEEEEEEEEEEEEEEEomigod

….over and over.

So allow me a moment, if you would, to freak out. I’ll try to keep this coherent.

My best friend works for a non-profit called WUSATA, who are dedicated to helping small agricultural business expand their business to global markets. They’ve been longtime supporters of ALS research at her office; they sponsor a team for the Walk to Defeat ALS every year, and for last year’s ALS Awareness Month, they had a Casual for a Cause campaign in which employees were allowed to wear jeans to work, three times a day, for a donation to ALSA.

When her boss learned that I was afflicted, she was incredibly supportive of me, allowing Danielle the time off from work to ferry me to appointments and coordinate my care. She sent the loveliest emails of support, and they were some of my earliest exposures to the amazing phenomenon of genuine concern and assistance from strangers. Her office raised a lot of money for ALSA for this year’s walk, and then they went one further. Andy, the Executive Director, proposed – and the rest of the team agreed – that WUSATA would hold Casual for a Cause again, from October through the end of the year.

To benefit me.

A charity campaign directly organized to be of specific benefit to me personally. When Danielle told me, I cried. A lot. I was powerfully overcome with..more than gratitude – a sense that the universe works itself out sometimes and takes care of people and maybe karma was a real thing. Beyond flattered, speechless and just…

Holy SHIT you guys. HOLY SHIT.

I mean, who the fuck am I even, that an entire office full of people should care enough about me, I’ve never even MET them, to help me. Even if they get to wear jeans as a result, I mean, seriously, who the hell am I to benefit from such a thing? I felt very …HOLY SHIT YOU GUYS OMG OMG OMG.

The campaign ended last week. Apparently they announced the results in WUSATA’s staff meeting on Monday. In three months, total strangers raised over nine. hundred. dollars.

NINE HUNDRED FUCKING DOLLARS. MORE THAN. NINE HUNDRED THIRTY THREE FUCKING DOLLARS.

Danielle told me by phone chat after the meeting was over. I stared at the phone for awhile, my mind in static buzz, the phone screen becoming blurry because I just…lost my shit. And cried.

Before this happened to me, before all of this drama, I never knew what it was to cry from joy. It was foreign. But now, more than once, this time more than anything, my chest felt like it was going to explode, I was so happy I was freaking out a little.

They sent me a check. The card was adorable. Look!

And they wrote the sweetest message inside:

I am so grateful to the employees at WUSATA for their support. I am so grateful to Janet, for her support for my best friend to be available to support me, and to Andy, who arranged for his employees to participate.

And I am so indebted to Danielle, who championed me and made this possible.

Life, Death, Something in Between

December 26, 2014 tragerstreit1 Comment

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

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

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

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

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

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

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

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

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

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

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

“Privileges”

December 17, 2014December 17, 2014 tragerstreitLeave a comment

I joke a lot about “membership has its privileges” when I get some special attention over my disease. Closer parking spaces. People holding the door for you longer than they normally would. Things like that. I definitely notice I’m getting special treatment, the more debilitated I get, and “privileges” is becoming kind of a tired joke, but I’m learning daily how differently people get treated when they’re “less than perfect”.

I went through Security Theater this morning, to get on a plane to come to New Orleans for a vacation. (Hello from New Orleans!) Megan and Colin were my partners on this venture, and Colin did a fantastic job of running interference for me. We researched what was needed for someone to go through security with a cane and braces, and Colin was marvelous at stepping up and informing the various security peeps of what was expected.

Sidenote: Post 9/11, this was the most pleasant TSA experience I’ve had.

I didn’t have to remove my braces, they swapped my metal cane with a wooden one so I could walk through the metal detector, and then had me (try to) stand in the imaging machine – not backscatter, it turned out, some other technology. Megan’s going to research that. I wobbled. They patted me down a lot and swabbed my hands and shoes for explosives, and then a really nice TSA officer collected my things for me and led me to a chair to wait for the other two.

My cane and braces got us in the fast track through security. My cane and braces got us boarded first. Pre-boarding, bitches! My cane and braces get me more attention and consideration than I’ve ever had. It is just weird to me still, to be granted privilege and special status because my body is betraying me. “Here, you have less time, literally, than the rest of us. To the front of the line, please.” I’m grateful for the consideration, it sincerely does make my life easier. But it feels weird and alien still, because there’s that edge of “I don’t deserve special treatment” and “I don’t NEED special treatment” and on either side of that chasm is a yawning abyss of “Shut up, yes you do.”

I’m not sure what the point of this is. I guess part of me is a little appalled that it takes something like a terminal disease for people to notice and be nice to you. And I’m just as guilty of it. I’m far more likely to smile at a total stranger with some sort of affliction, like – hey, you’re okay, man, you’re cool. I’m on the other side of that now and… it’s not insulting at all, but it’s a little sad. Like, why wouldn’t you hold the doors for that dude but you’ll hold them for me?

And I joke about “membership has its privileges” but..really, it seems only fair that the universe dishes out SOME gentle allowances to soften the blows. Even if it’s only in letting me on the plane 20 minutes before everyone else. For every fall, there’s someone to help me back up. I’m happy to be in New Orleans on someone else’s dime, and I honestly couldn’t ask for two more considerate and compassionate travel companions who are on point and looking out for ways to make my life easier. (They were always there, though. ALS didn’t do SHIT for me on that front.) So I guess, if the universe is saying “Sorry bout your terminal disease, have everyone letting you on the plane first as a consolation” isn’t that bad. At least it comes with something. And I am grateful for those little mercies. They really do soften the blows, and make things just a bit easier.

I’m privileged to have those small mercies.

Thrown Off, and Thankful

December 2, 2014 tragerstreit1 Comment

I don’t say this nearly enough. I am grateful. SO SO SO (imagine about a hundred more SOs here) GRATEFUL for the people in my life that have stepped up to show their love, to see how they could help, to not bother asking how but just doing something.

I’m going to New Orleans this month, for a week, on Megan’s dime. Because she loves me and wants to travel with me and I love that city. We’re going to eat ALL the things. I’m going to Disney World next year, which Danielle and I had been planning for our 40th birthday celebration for awhile, but Danielle has just taken the reins of this thing, asked me what I wanted to do, and planned everything out. She’s even fundraising so that I don’t have to pay for all of it. My dear friend Melody came to visit for a week, all the way from New Hampshire. Just to spend time with me. The lovely Linnea, my first best friend/partner in crime, is coming this weekend.

Dying makes you pretty popular, it seems.

And I always thought of myself as not that special, I mean – sure, nice person, okay, but extraordinary? Hardly. And here are all these people taking me places and coming from far to spend time with me, telling me without words that I AM kind of awesome, shut up.

It’s amazing, and overwhelming, and yeah. I’ve probably said it all a hundred times, and I’ll say it a hundred more. I love everyone in my life. I love the people who have made an effort to visit, I love the people who couldn’t quite get it together to do so, but wanted to. I love the people taking me to real places, I love the people who have gone to imaginary places with me.

This isn’t an easy journey for you guys. I know damned well. It’s easier to ignore me and hope I’ll quietly go away (SPOILER: I am going, but sure as SHIT not quietly). It’s hard to have the conversations with me, it’s hard to hear the jokes. It’s hard to know someone who is dying, and not let that depress the shit out of you or chase you away. Some of you will drop off the line when things get really horrible, and that’s okay. I’m grateful you are staying for as long as you can. Because I know that it’s hard. It’s one thing to say, “I have a friend dying of ALS” in conversation, and it’s another to admit to yourself in the small hours of the night that someone you know is going away and there’s nothing you can do about it.

You’re so incredibly strong for dealing with this. For doling out what kindnesses you can. I did not expect you to, and I’m grateful you stayed. You’re amazing people. Each one of you.

So thank you. For being a point of light, for being a celestial body in my universe. The cosmos is infinitely brighter with you in it.

Bathroom Bitching

November 24, 2014 tragerstreit3 Comments

I promise this isn’t really TMI, but I’m gonna talk about the politics of bathroom stalls. And a personality defect of mine, it turns out.

I’m getting weaker; even if DocGos says she doesn’t notice any difference. When we first met, I used to be able to walk up the stairs with two hands full. Now I can’t; I have to have one hand free for the rail, and on no-spoon days I need both. When we first met, I could stand up on my own from sitting in a chair. I really can’t anymore.

Which means I need the handicapped stall now – I need the bars. Well, it’s like the cane – I could probably manage without? For awhile longer? But it’s so much easier with, and why make my life harder just to prove to myself that I can, that I’m still an independent woman who don’t need no man. erm. Bars. Yes. Bars. That’s what I was talking about.

And because I need the bars, I am trying really really hard to not be bitchy about it when someone who clearly does NOT need that stall is in it.

Okay – confession. I have *always* gotten a bit internally bitchy about people using the stalls when they don’t need to. It’s a serious character flaw of mine – I get bent out of shape when people don’t follow The Rules. I get irritated when someone cuts someone else off in traffic. Even if the person cut-off doesn’t even notice. I get irritated when people cut in line, even if I’m not in that line. I get mad when people at work leave their dishes in the bathroom when the stinkin’ break room is LITERALLY ten feet away. I get SO MAD when people don’t break down their fucking cardboard boxes and just leave them in the hallway. It’s because I tend to get really mad on behalf of other people, whether they even realize they’ve been wronged or not. By cutting that guy off, by sneaking in line, by not taking your dishes in, by not breaking down your cardboard and putting it in the recycle area, you are making someone else’s life more difficult because you are a selfish ASSHOLE. Even if it’s just a minor inconvenience, there was still no need for that inconvenience to exist, you just created it because you are a LAZY SELFISH DICK. And so I get mad. Because you are not following The Rules.

…Bitch.

ANYWAY. At work, we have a huge wheelchair stall, and the normal sized one next to it has bars, so it’s awesome and I use that one, because I don’t need the space, just the help up. But consistently – CONSISTENTLY – the wheelchair stall is taken up. By tiny, tiny women. Like, a regular stall would feel large to them, WHY do they need the extra extra space? It’s always been a phenomenon that made me scratch my head, but there’s actually been a couple of times that it’s made me wait. And I try not to get irritated, but seriously.

YOU ARE FIVE FEET TALL AND 80 POUNDS SOAKING WET WHY DO YOU NEED A TEN SQUARE FOOT BATHROOM STALL.

Answer: YOU DON’T.

So when I go in there, and both stalls are taken, I have a choice between using one of the other ones, and then using the freakin’ toilet paper dispenser to pull myself up and hope to GOD it doesn’t come off the wall, or wait. And if I don’t have my cane with me at the moment, then they look at me weird for waiting. But if I DO have my cane, sometimes they have the good grace to look abashed. Usually not – they’re oblivious, because people at my work are very self-involved. See: previous posts about trying to not get knocked the fuck over in the cafe and halls because they’re not paying attention.

I wonder if, when I’m in a chair, I’ll be any more irritated. Maybe I’ll do the passive aggressive thing and put a note on the door: “THERE IS SOMEONE IN THIS BUILDING WHO ACTUALLY NEEDS THIS STALL – DO YOU?!”

In Comic Sans, natch.

Realistically, I probably won’t. I’m really good at ignoring those breaking The Rules when it’s me getting shafted. Though, I did get really irritated this weekend about it – I went to Bingo at an American Legion lodge (looong story) and wound up waiting for ten minutes for the one handicapped stall. The other two were simply too wide, I wouldn’t have been able to brace myself on the walls to stand, they were just too far apart. There was a line, and I as time went by I started to say kinda loudly every time someone asked if I was in line, “Go ahead, I have to wait for the handicapped stall, I need the bars.”

Man, I dunno WHAT she was doing in there. She took her shoes off at one point. I thought she was changing her clothes, but she came out with nothing but herself. And flushed a HOJILLION times and used up most of the toilet paper. I just…man. Yeah. She was old, there’s all kinds of stuff happening there that I don’t even know. Probably best that I don’t know. I just know I had to wait ten minutes to pee and she totally could have used the other stalls.

This is all the beginning of the inconvenience, the social stage of decline, and it will be really interesting to see how I adapt to it when it gets worse. Maybe I really WILL become the Bathroom Stall Avenger. Maybe I’ll just pull an Elsa and let it go. It will be telling, either way. Just as I’m discovering the true character of those around me, I’m discovering what I’m made of, too. I have kindness and patience I didn’t know I possessed, and intolerances I didn’t know I had in me.

I’m building my character even as my body unbuilds itself.

Followup to that last thing

November 21, 2014 tragerstreitLeave a comment

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

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

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

Beyond a compliment

November 20, 2014November 20, 2014 tragerstreitLeave a comment

A coworker stopped me in the cafe today to talk to me a little bit, she’d just discovered I have ALS and had been told I was choosing the right to die when I want. We spoke a little about prognoses and comforting thoughts and coping mechanisms and …silver linings, if you will? Beautiful ways to think about death, thoughts that get you through it.

I told her that I’m almost (almost!) grateful for the disease, because it’s shown me how much love I have around me, how many people I have willing to support me, and to hear through their words how important they think I am. I’ve always thought of myself as a little bit ..standard, ordinary, unimpressive? But people have come out of nowhere to tell me I’m wrong.

“Well of course,” she said. “You can’t radiate THIS much joy and not draw people to you.”

I think that’s the most beautiful thing anyone’s ever said about me. And I was speechless.

Gravity: It’s the Law.

November 16, 2014November 16, 2014 tragerstreitLeave a comment

I want this out here but I’m not going to say much about it because I’m trying really hard to not let it get to me so much so I’ll be quick.

I had a fall tonight. My first proper one. I was disembarking from an Amtrak train, stepping down from the train to the little foot step they have, and my leg just totally gave the fuck up and I fell. There was just nothing to catch myself on. I’m not really hurt, but there will be bruises and scrapes. Mostly I was humiliated. I was sitting on the ground trying to figure out how the hell to get back up because all I had for support was a stupid yellow footstool while total strangers were bending over me, asking am I okay, do I need help up?

“I’m fine, just really embarrassed,” I told a really concerned woman. She assured me there was nothing to be embarrassed about.

There was an Amtrak employee with the club car right there, apparently he’d been waiting for me because the conductor had told him there was a woman with a cane. The conductor had noticed me, because the train came on the opposite track that the station signage said, and everyone had to run to the opposite platform. And so I held up the whole train while I crossed under the platform and back up to the other side, and the only doors they had open were at the front, so it took me forever to hurry over. He knew damn well there was a woman with a cane on board. And that effort is probably why my legs didn’t quite have the strength to manage – I used up my fucking spoons just getting ON the damned thing, so when I got off, my leg just said “nope” and folded under me.

The driver helped me up, basically by having me wrap my arms around his neck and hauling me up. He asked a million times if I was okay. I repeated that I was, just embarrassed, and he also told me it was nothing to be embarrassed by. He just wishes he’d seen me before I tried to step down. “I’ve see perfectly healthy people WITHOUT canes fall while climbing down.” He gave me a ride through the station and out to the front, where my little brother Justin was waiting for me.

I knew my first fall would really suck, and it does, and I’m not freaking out but it’s really frustrating and sad because I know this is just the beginning. And I hate it.

The weekend was otherwise perfect, and I hate that it ended on this note. But it didn’t ruin anything by any means, and I’m going to end this before I dwell on it too much and it DOES wind up ruining it.

Special offers for a limited time only

November 15, 2014November 15, 2014 tragerstreitLeave a comment

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

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

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

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

“I’m with you,” I grinned.

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

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

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

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

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

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

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

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

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

Assistance

November 11, 2014November 24, 2014 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.

Talking to Strangers

November 3, 2014November 3, 2014 tragerstreitLeave a comment

I was on vacation in Leavenworth this weekend. It was partly to celebrate Danielle’s birthday (which is tomorrow, November 4th) and partly because we’ve been itching for a road trip awhile and a birthday was a good excuse. My weakness reined us in, for sure, but it’s a small town so we didn’t have to compromise much. There were three instances in which I told a total stranger about having ALS, the first being the woman who checked us in to the hotel apologetic as hell because our room was on the third floor when she saw I was using a cane. She asked what happened, had I broken my leg? She was very sympathetic when I told her of my diagnosis, and a little bit baffled because I was so young. She knew about ALS because of the Ice Bucket Challenge (I FUCKING LOVE THE ICE BUCKET CHALLENGE); she was very willing to be as accommodating as she could to help my stay be as easy as possible.

And the other two were on opposite sides of the spectrum.

++++++

One:

Danielle’s dropped me off at a shop to wait for her to park, because she has to park kind of far. (She wound up actually just parking at our hotel and walking the four blocks) I sat on a bench in front of the spice and tea shop we’re going to check out, and after a little while, an older woman with a walker approached. I asked if she’d like to sit, and scootched over to make room for her. I had been in the middle of adjusting my braces, because I’d left some velcro exposed (still haven’t made my straps, dammit) and it was catching on my socks. She asked what they were for, did I hurt myself? I told her that I had ALS, clarifying Lou Gehrig’s when her face was blanked.

“Oh. I’m so, so sorry,” she told me, with genuine sympathy.

“Thank you,” I told her sincerely. “I’m doing very well, though. It’s going to be okay.”

She was silent for awhile. “To tell you the truth,” she says quietly, “I wish to God it was me instead of you. You’re too young.”

I looked over at her and realized then that she was very near to crying. Her eyes were brimming with tears and she had a faraway look. “Oh, sweetie, I’m okay, I PROMISE,” I told her quickly. “My progression is so slow. Nothing hurts. I’m okay, it’s alright.”

She asked how old I was, and repeated “too young” when I told her. We introduced ourselves to each other, her name was Sheila. She asked a little bit about my progression, my symptoms, what my support structure was like. She agreed in the end that I was in the best possible situation and seemed mollified, but still upset. Danielle showed up then, and we said goodbye.

Once we were in the store, I said quietly, sheepishly, “I just made a total stranger cry.”

Two:

We stopped on the way home, randomly, in Goldendale, Washington. Because we needed a pee break and we’d never been there before. We discovered an honest to god observatory, saw some deer in a graveyard, and then Danielle saw a bookshop and wanted to go in. The book store turned out to be an Everything Store – the guy had literally everything. Books, jewelry, games, toys, fishing gear, light bulbs, office supplies, plumbing gaskets, literally everything. The shopkeep was named Dan, and came out when he heard us come in.

“Good morning,” he said cheerfully. “How are you today?”

“Fantastic,” I told him, “you?”

“Wellllll I was GONNA say ‘hobbling along’, but saw your cane and thought better not.”

I laughed and told him it would have been alright. He told me to have a look around and tell him if I needed help finding anything, he probably has it. After looking around a bit, I conceded, “You really DO have a little bit of everything.”

I stood at the counter while Danielle looked around. He looked over to me. “If you don’t mind me asking, what happened? Is it an injury? Something you were born with?”

“ALS,” I told him, “Lou Gehrig’s – recently diagnosed.”

“Oh, I’m sorry,” he said.

I gave him what is now my standard, “Thank you. I’m doing really well, though.”

And after awhile he smiled and said, “You know, I can tell. You’re going to be okay, you’re handling this great. You have a very bright spirit. You’re handling this with the right attitude; you’re gonna be fine. Nothing’s gonna get you down.”

I grinned and told him he was absolutely right. I have the slowest progression, the best support network, and the most amazing friend in Danielle. “That’s the right way to be about it,” he said.

We introduced ourselves, and had a little chat about the origin of my name, he told Danielle and I about the apartment he had in the basement of the store for his kid (“I didn’t want him living at home”) that his son never moved in to, his other property in a town of 93 people, the work he does on it. We chatted about a whole lot of little things while Danielle figured out what she wanted to buy. I bought some Topps stickers – because I’d been on vacation 3 days and hadn’t bought ANY – and instead of selling me five packs for $10, he asked if I’d like to buy the whole box for $15. I said heck yes. We said our goodbyes with a promise to stop in again if we were in the neighborhood. He repeated his complete confidence that I was going to handle this just fine.

We left the shop, and I was in a great mood.

++++++

Both reactions were sincere, neither was an incorrect way to behave. Your reactions are entirely your own. The only ways you could possibly screw it up when I tell you about my disease is to a) gasp and tell me it’s SUCH an awful disease and it’s going to get so much worse, or b) tell me it’s my own fault somehow for a life of sin or something. Or laugh. That would be pretty bizarre and awful of you.

Both reactions sincerely touched me. One left me troubled, one left me buoyant. Neither of my reactions are the responsibility of the person invoking them. I have a hard time accepting the inverse, though. When I tell someone about the diagnosis, and it predictably troubles them, I feel guilty and responsible for bringing them down. It’s not my fault. And it’s not her fault that her deep sadness troubled me so much. It was not his job to cheer me up. And it’s not my responsibility to sugar coat or put a smiley face on a terrible situation.

It is not my responsibility, but it is my nature. And I could tell it was his, too. He and I are of the same “Fuck it, it’s gonna be alright” mentality.

And sometimes, I’m of her mindset, too. This is terrible, I feel helpless, I wish I could change it.

Both reactions are correct and useful, in their own turn. And I’m happy to have met both of them, this weekend. It’s put words to perspective, and both of them were very sweet people and I’m glad they spoke the words they did. It means the world to me, to know I’m not alone when I’m sad, and to know there are cheerleaders who have got my back when things look awesome.

Even when – especially when – that support is from complete strangers.

Legal

October 29, 2014October 29, 2014 tragerstreit3 Comments

Man, real life is just NOT going to give me a break lately! Sorry! But it’s also awesome that I’m still able to DO so much and keep up with what I’m being asked to do. So I will take this all optimistically.

Anyway. The lawyer.

First of all, we used the Crowdrise funds to pay for it, which I felt weird about, but that’s precisely what that fund is for. So it was $650 NOT out of my pocket. Yay! Thank you everyone who donated to that. I love you. For reals. I’ve put off this legal appointment for a long time because I simply couldn’t afford it.

We were recommended to use a particular elder care lawyer, who had a lot of dealings with ALS patients. For lack of knowing what the hell we were doing anyway, we went with him. He had the stereotypical swanky corner office with floor to ceiling windows, nice couches. I was completely intimidated, I won’t lie. Everything about the place said “You can’t afford this.”

We explained what my situation was. Dying of ALS, need to get my affairs in order. We explained what we wanted. Answers on particular laws and financial advice. I’d filled out a questionnaire (why does that word have two Ns? Millionaire doesn’t. Weird.) that detailed my pathetic assets. Which basically amounted to the life insurance policy through my employer and a little bit of 401k, and my house. Which I still owe almost everything on because I’ve only lived there a year.

(Goddammit. One fucking year. FUCK!)

I told him I was planning to sell the house and buy something single-story. He looked at me like I was on drugs and told me he would absolutely not advise buying another house. I’m not going to get any financial benefit out of it, he told me. It’s going to be nothing but a money sink. Consider renting. There are laws that say landlords HAVE to let you remodel to be ADA compliant. There’s subsidized disabled housing, too, but the wait list is like 2 years and I’m not even actually disabled yet so I can’t even START that process. So why he brought it up I don’t know.

Danielle (my bestie and primary caregiver to be) and Gecko (my brother and finance manager when I die) were with me, and both had a lot of very good questions. Danielle asked about Medicare and Medicaid, what they would cover, how would we/what will be appropriate procedures to move me to assisted care living, ten fifteen twenty years down the road when I need it?

He looked genuinely surprised. “Ten years? Did the doctor give you that long?”

Um. “I have an extremely slow progression,” I told him. “Two years since I noticed a problem and I’m still walking.”

“OH. Oh okay. Okay. Buying another house is NOT so far fetched,” he told me. “Usually when people come to me, they have a small handful of years left. Three maybe. Buying a house you’re only going to have for three years is not advised, but you’ll get benefit out of it if you live there for ten.”

We talked about in-home care vs assisted living. How much worth you have and how much you have to use up before Medicaid kicks in. Living on SSI and how much money you get to keep (hint: HARDLY ANYTHING). In assisted living? It was like $20. That’s all you get. They take care of your housing and food and medical care, sure, but entertainment? Clothes? Toiletries? if you have a cat? You’d better figure it out because $20 is all you get. If you live at home you get to keep more of it, but of course you have to deal with mortgage and bills and food on your own. It’s REALLY not a lot.

So, hope you’re independently wealthy! Cause otherwise your life is going to be small and hollow. Sorry your disease sucks, but let’s make it worse by bogging you down with money woes and bureaucracy and complicated decisions! What can you afford? Nothing! A small bed in the corner of a nursing home somewhere where we’ll tuck you away there until you die.

We talked about executors of estate, who I want to have as my finance controller, who I want to be in charge of medical decisions. He gathered information and after the appointment he mailed me papers to certify all of that. He told me to get my living will in order and spread copies of that to everyone. He also said we need to draw up my will to state who gets what portion of what assets I’ll have, and I can attach a sheet later dividing up physical goods.

I kind of froze. Who gets what? I don’t fucking know. I threw out some percentiles, and Danielle insisted she did not need to be figured in there anywhere but if anyone deserves ANYTHING when I die then holy fucking SHIT is it Danielle. My brother Justin a close second. Gecko third, for being willing to deal with all my debts and shit when I’m dead.

Though I DID find out that when I die, Gecko will NOT be responsible for dealing with my debts. With very small exceptions (that I do not have), those debts get written off when I die. “I’m not suggesting you go run up your credit cards,” he cautioned with a shrug. “But.”

When we left, my brain was full of doom and money and gloom and responsibility and numbers, so many fucking numbers. What’s fair. What’s right. What’s necessary. Next steps. Long term, but not long long term because you never know. I was keenly aware of my situation. How little resources I have. How much money it’s going to take to keep me alive. How little time I have to save any of it.

I was completely overwhelmed, and really wishing I drank at all.

It’s a fucking complicated thing, dying. And it seriously is unfair that this diagnosis does not come with a lawyer, an administrative assistant, and a kitten.

ALS : FTS

Seriously, Fuck This Disease.

Author: tragerstreit