Category: Support Network
Inappropriate Friends are the Best Friends, Part 3
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.
Crying for the Right Reasons
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
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”
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
I don’t say this nearly enough. I am grateful. SO SO SO (imagine about a hundred more SOs here) GRATEFUL for the people in my life that have stepped up to show their love, to see how they could help, to not bother asking how but just doing something.
I’m going to New Orleans this month, for a week, on Megan’s dime. Because she loves me and wants to travel with me and I love that city. We’re going to eat ALL the things. I’m going to Disney World next year, which Danielle and I had been planning for our 40th birthday celebration for awhile, but Danielle has just taken the reins of this thing, asked me what I wanted to do, and planned everything out. She’s even fundraising so that I don’t have to pay for all of it. My dear friend Melody came to visit for a week, all the way from New Hampshire. Just to spend time with me. The lovely Linnea, my first best friend/partner in crime, is coming this weekend.
Dying makes you pretty popular, it seems.
And I always thought of myself as not that special, I mean – sure, nice person, okay, but extraordinary? Hardly. And here are all these people taking me places and coming from far to spend time with me, telling me without words that I AM kind of awesome, shut up.
It’s amazing, and overwhelming, and yeah. I’ve probably said it all a hundred times, and I’ll say it a hundred more. I love everyone in my life. I love the people who have made an effort to visit, I love the people who couldn’t quite get it together to do so, but wanted to. I love the people taking me to real places, I love the people who have gone to imaginary places with me.
This isn’t an easy journey for you guys. I know damned well. It’s easier to ignore me and hope I’ll quietly go away (SPOILER: I am going, but sure as SHIT not quietly). It’s hard to have the conversations with me, it’s hard to hear the jokes. It’s hard to know someone who is dying, and not let that depress the shit out of you or chase you away. Some of you will drop off the line when things get really horrible, and that’s okay. I’m grateful you are staying for as long as you can. Because I know that it’s hard. It’s one thing to say, “I have a friend dying of ALS” in conversation, and it’s another to admit to yourself in the small hours of the night that someone you know is going away and there’s nothing you can do about it.
You’re so incredibly strong for dealing with this. For doling out what kindnesses you can. I did not expect you to, and I’m grateful you stayed. You’re amazing people. Each one of you.
So thank you. For being a point of light, for being a celestial body in my universe. The cosmos is infinitely brighter with you in it.
Followup to that last thing
1) I told that to my therapist last night and he got a bit weepy. Awesome.
2) I sent her an email this morning to thank her for her words, that it was one of the sweetest things anyone has ever told me, and she said, “I thought I was stating the obvious.”
She finished with “Just keep it, joy is something that heals and grows.” And it does. And I’m once again so grateful for the planets in my orbit.
Beyond a compliment
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.
Special offers for a limited time only
I’m taking Amtrak to see my friends Megan and Colin for the weekend. It’s a really nice, leisurely ride through some beautiful scenery, you don’t even notice the three hours gone by. I’ve taken this ride a few times, loved it each instance. SO SO SO much better than a bus. My Greyhound days are behind me, that was enough weirdness tto cover the rest of my lifetime. I don’t know WHAT it is with me and public transportation, why I attract the strangeness. Luckily Amtrak is immune to that. Yay!
I got a little preferential treatment..or different treatment this time. It’s been awhile since I’ve been on Amtrak, this is the first time since the diagnosis. I was asked if I needed help out to the car; I said I did not, I walk with a cane, but I’m still walking, you know? I was hoping he’d put me in a single seat, because that’s easier to get out of, but that’s alright. I’m not yet so far declined that I need that, just..it’s nice to have.
While I waited, I sat beside this lovely woman. She asked if she could sit beside me, and I told her of course. She explained she has Parkinsons, and that her disease makes her tire easily. I told her I know something about that and smiled; she did not recognize “ALS” but she knew “Lou Gehrig’s”. She said she was really sorry, I was so young, and that…was pretty much it, which is awesome. No dwelling, just acknowledge and move on. I don’t at ALL mind questions about it – please ask me ANYTHING! – but the conversation tends to get dark when they dwell on it. There’s a difference between curiosity and just..awkward. Instead, we talked about nail polishes and kids and traveling, and how stupid it was that everyone was lining up to get on the train when we had assigned seats.
“I’m waiting right here,” she told me firmly.
“I’m with you,” I grinned.
When we headed out, we got a club car ride to our cars. OH MY GOD so awesome. Seriously if you have to have a disease, it should have some perks, and apparently club car rides to your train car are part of that. Front door service, man.
I did, however, have a HELL of a time getting on the stupid train. The steps are steep, and I basically had to grab the hand rails and haul myself up. It was…not easy. For a second I wondered if I was going to be able to pull it off, but I did. The club car driver was careful to wait and make sure I got on okay before he drove off with the other woman.. I won’t be able to do this much longer. Mark one more thing I am losing.
But fuck it! I can do it for now. So for now it’s fine. I’ll take it. The lady and I wished each other a happy life.
The point of the trip is to put together a cookbook of my pastry recipes while I’m still able to use my hands. I think it’s a great idea, I’d really like to document my stuff, and I have a lot of fun writing the recipes out, so why not. Colin and Megan will take pictures and typeset the thing, we’l all bake delicious things and eat until we’re fat and sassy.
It’s been a really strange shift in mindset – “while I am still able”. It’s hard to think of things in those terms, and I have a really strong sense of pressure to do as much as I can, while I can. I am though, inherently lazy and I just don’t wanna. So it’s a constant fight between “do this because you won’t be able to later” and “hey let’s curl up in bed with the cats and watch How It’s Made all night”. There’s a balance there, I haven’t found it yet. It’s the same fight with “I want to fit into my clothes” and “EAT ALL THE THINGS! FUCK IT! I’M DYING!”
Just like the balance that the universe seems to be deciding on for me, between being helped and what ALS is taking from me. So far, ALS is winning, and it will continue to, but that’s alright. The universe is mostly balancing it out by showing me just how much people are willing to help me when I need it. And even when I don’t. I don’t have to ask – folks just show up and ask me to let them help. It’s overwhelming and awesome and I’m sorry it took a terminal disease to show me how many amazing people I have in my orbit. I’m still learning that whole “let people help” part, that’s hard.
So uh, this post really has no point. Like most of them. Just, hi. This is what’s going on. And I kind of wanted to get something else up here to move away from the talks about assisted suicide because MAN that was hard to write and I know it was really hard for you guys to read.
But again. You guys overwhelmingly showed me support in my decisions and thought processes. Even those of you who disagree with Death with Dignity, still voiced support in whatever I chose to do. I love you. I literally could not face this without support from you all, and I am incredibly grateful. I’m grateful to the conductor who asked if I needed help getting on the train, I’m grateful to the club car driver who saw the cane and offered me a ride, I’m grateful to the lady with Parkinson’s for keeping me company for a little while.
I appreciate the special offers, even if I’m able to take advantage of them for a limited time only.
Thank God for Happy Planets in My Orbit.
Chat Log from today.
Eric: you write to much
going to need you to cut that down to like 2 paragraphs
thx
me: TL:DR – GONNA KILL MYSELF SOMEDAY AND YOU CAN’T DO NOTHIN ABOUT IT
Eric: yeah add a tl;dr on that shit
process improving
😀
but do tell me before it happens
me: I will. fo sho
Eric: i need to know so i can come steal that zombie tramp poster before anyone else
you know how it goes
me: hahaha I will make sure you get it.
Eric: and your baking stuff then we’ll call it square for all my years of service
me: hmmmm baking stuff might be a hard sell
I can add you to the pool of people to divvy that shit up
Eric: i dont want the divy
i want it all
im more qualified than anyone else
me: ….besides Eryn who went to culinary school with me
Eric: with my deep german baking heritage
me: hehehe
Eric: do i hear bake off?
me: XD
Eric: ok ok
if i make you the most amazing black forest cake
you put my name in the hat twice
deal?
k deal
and now i take my leave
to go sit in a class with people who dont even take notes
me: ok bye
Eric: DEAL
poof
me: (you forget I don’t like chocolate cake)
Eric: no i dont
but you’d eat it because it was the most amazing of all cakes
then you’d be like, shit my als is gone
too amazing
too
amazing
me: hahahahh I <3 you And I really do. Eric’s a good kid. The little brother I never had, even though I have a little brother. He is my spark of mischief, I am his Jimmy the Cricket.
Assistance
(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
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
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.
I’m still alive
I’m doing science and I’m still alive!
I am still doin stuff, and I have things to tell you, but a total lack of the time to write it up. Man. Life is crazy but it’s good that I have the energy to keep up with it still. I still need to tell you about the lawyer, and other things.
This weekend, my bestest and mainest of babes is throwing a huge-ass garage sale to fund my crowdrise campaign. She’s been working incredibly hard on it and I can’t even tell you how much I love her.
I hope you guys are doing well. <3
The Walk to Defeat ALS
Overwhelmed. In the BEST of ways.
I’ve gone on and on before about how grateful I am for the support I’ve gotten, how much I appreciate the support I’ve been given, how blown away at the love I’ve been shown. It’s probably become a little bit tiresome.
Well, suck it. There’s a lot more coming.
I admit I totally got press-ganged into doing the Walk in the first place. The Veterans Resource Group had a table in the cafe at work. I stopped by to chat, and met another person who ALSO had ALS for the first time. (I’ve met a fair few since then. We’re a small crew, but we run – or hobble or ride – in the same circles.) Part of the table’s purpose, besides awareness, was to recruit people for the Walk to Defeat ALS. “You should form a team,” I was told. “I bet you’d get a lot of support.”
I was of two opinions on that. On the one hand, it’s asking for something. I’m not good at that. On the other hand, a tiny irrational fear, ‘what if I form a team and no one shows up?’ While I was debating this in my head, a coworker walked up to the table to see what I was up to.
“Vashti’s making a walk team, do you want to join her?”
He looked at me, “You are?”
“I…uh. Apparently!”
And that’s how it started. I put up a poster outside my cube, I wore the red wristband, I talked openly and honestly about the diagnosis when I was asked, but I felt really weird about asking my friends to come over in support of me. I caved and asked my friends to help me name the team at least. We had a lot of really good suggestions, but in the end, The Godzilla Squad won out. On the 16th, I posted my team link.
On the 17th of August – the next DAY, for those of you playing at home – I was at 17 members and over $1000 raised.
To say I was overwhelmed is a gross understatement. So, fun fact! I’d never cried for joy before. I always thought it would be kind of cool if something like that happened to me, but I am not sentimental in the right ways, I guess, so it never happened. Until then.
The Ice Bucket Challenge gained serious momentum, and so did my team. On the 26th, I was at $3k and 26 people. A dear friend of mine in Sacramento also started a team in my name, Team Dinsdale. We met online waaaaaaaaaayyyyyyyy back in the day, before the Internet was a thing, when you had to dial directly in to someone’s computer and leave messages on a digital bulletin board. In the BBS days, my first handle was Dinsdale.
Life continued its usual frantic pace, there was a lot happening, and before I knew it, it was the final weekend. I had four people staying at my house to attend, and one flew in from Sacramento to be here for me. I was spoiled absolutely ROTTEN that weekend, with homemade Ethiopian food of amazingness, fancyface ice cream and donuts for dessert, and the best company a girl could ever ask for.
And then, Walk Day. This is my team:
Amazing people, every one.
We gathered in a spot that was strategic and awesome until the live band started playing. Right. Bloody. There. But we were VERY easily distinguishable in the crowd with the hoodies (OMG SO AMAZING LEENDAH I LOVE YOU) and Danielle, my main babe, had printed out the kitten-vs-Godzilla picture I’d been using for my Walk page, and attached them to an umbrella. And Matt. Oh my golly Matt. He had commissioned a mighty cape of DOOM and a head cover for his staff:
IS THAT NOT AWESOME.
Yes of course it is, don’t even bother answering.
There were a LOT of people there. Oh my god so many. I’m really glad I had my team around me so I was constantly distracted by OH MY GOD HI I HAVEN’T SEEN YOU IN FOREVER instead of ..holy crap I am in the biggest of big crowds and this sucks. We borrowed wheelchairs,Danielle and I, because I can walk a mile, but it sucks, and I think three is out of the question. Danielle had to borrow one because her foot is borked and it hurts her a lot to be on her feet at ALL and walking three miles is similarly out of the question.
It was a FANTASTIC walk. Well. Roll. I got pushed. The chair was surprisingly easy to wheel myself around in, but I had a lot of people willing to help me out. There’d been cold and rain suddenly, but it cleared up in time to be LOVELY for the walk day. Even a little too warm to wear the hoodies all day, for they were made of fleece and are SO COMFY AND WARM but maybe not the best when standing for a while in direct sunlight. Megan was the smart one, she held the umbrella. Some surprise faces showed up – I didn’t expect my older brother there, he told me he had to work but then didn’t have to! – and met a couple new friend-of-friend faces and did not at ALL have time to introduce everybody to everybody. We walked a really pleasant stroll along the waterfront, and groups connected and drifted as we walked.
We finished, exultant, and some of us stayed for a picnic, and some of us had to get back on the road.
I am so. so. so incredibly grateful. I am grateful to everyone who came. Everyone who couldn’t come but donated. Everyone who couldn’t come OR donate, but thought about me.
In the end, my team was 49 members strong, more than 35 of whom showed up to walk, and $5460 raised.
I’ve always strived to be the kind of person someone would care deeply about, and like having around. I …I guess I managed that, if the support and love I’ve been shown is ANY kind of indicator.
I love you all. You’re amazing and the world is lucky to have you in it.
Calling Cards of AWESOME.
Speaking of cards!! You may remember a conversation I had with my dear friend Megan about playing the “I’m dying” card, and she decided to needed to make me actual cards with various demands.
GUESS WHAT.
SHE MADE ME THE CARDS.
She and her fantastic husband Colin actually made me the cards. They are a physical thing. They are sparkly embossed and amazing. They ALSO gave me the Jack Skellington and Oogie Boogie figurines you see (and I heart them SO HARD) and the black heart decoration which does not at ALL show up in this picture. But it is soft and awesome.
Megan is one of the most thoughtful people I know. She once made me a little box of lip cutouts that she’d kissed with lipstick on, for when I need smooches and she is not there to give them. I can’t tell you how amazing she is. Her husband Colin, who I’ve known just as long, is also amazing and full of love. He is the perfect partner in crime for her and I love them more than I can ever possibly tell you.
And THIS, THIS is how I survive with a smile. I am orbited by planets of awesome, and the pull of their gravity keeps me from collapsing in on myself.
I love these cards and I am looking forward to the looks on people’s faces when I actually use them. I love the people who made them. I love the people who gave suggestions for them. I love that I have such amazing people in my life. I love that my diagnosis has shown me exactly how loved I am, and how completely I am surrounded by the brightest and best people in the universe.
I love my life, ALS and all.
This is What A Lucky Girl Looks Like
Longer post to come. But I am so, so grateful to everyone that came out to show me love and support today. So grateful to those that could not but wanted to. So grateful to everyone everywhere who ever gave a shit about another human being. I am so glad to be alive and in such excellent company.
I am so fucking lucky.
Spin on
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.
Answers!
So I opened the floor to questions, and I got a couple. I hope you guys know you can always ask me questions and I’ll try to answer them as honestly as I can. The usual disclaimers apply – I speak for myself, not for everyone with ALS, your mileage may vary. Hit me up in comments (anonymously if you like) if you can think of anything else you’d like answers to.
Q. How does progression work? Random parts or a clear path with variable timeframe?
Everyone’s experience with ALS is different. Though according to Dr. Goslin, the rate of progression tends to be steady. If it’s a fast progression now, you can expect a rapid decline until the end. If it’s slow and steady (as mine is) it will remain that way. ALS doesn’t go in fits and starts, apparently – it’s a constant rate. I’m losing the ability to walk, but it’s not as though one day I’m going to wake up and my legs just don’t work. They’re going to fizzle out slowly.
Some people start with the speaking/swallowing difficulties, some people’s starts in the hands, some peoples’ start in the hands and feet at the same time. Some people die within months of learning something’s wrong, some people go for years before being diagnosed because they just figure they’re clumsy or getting old. This is the main reason I can’t speak for everyone with ALS. Our feelings and how we deal with the disease are incredibly varied, but nothing so varied as how the disease manifests in the first place. It’s entirely unpredictable except in how the story ends.
Q. Does it hurt? Not trying to do things but just in general?
The disease itself doesn’t hurt at all. That’s one of the things I was actually lamenting during my diagnosis – nothing hurt, so I couldn’t point to any one thing as the problem. The only pain that ever came as a result of ALS were the occasional muscle cramps in my legs, but they’re rare now that I’m taking neurontin to calm the twitches. Kneeling now hurts because there’s no longer that cushion of muscle protecting me – so my bones are pretty much pinching my skin against the floor. ow. But no, nothing hurts as a direct result of the disease. I don’t feel the neurons burning out. My only clue that it’s happening are the random fasciculations and the progressing weakness.
Q. I know you’re Christian – how does that affect your thoughts? Does it give you something to hold onto or is your faith shaken?
H’oboy. Well. I’ve always considered myself Christian in that I believe in the teachings of Christ. It boils down to – Be Kind. Take care of those who can’t take care of themselves. Believe that you, too, will be cared for. Every major religion has some variant of the Golden Rule. I was raised hardcore Evangelical Christian, and I still hold a lot of the same faith, but I don’t believe in the Bible as a literal record of events, and ..yeah. It’s complicated, and changing. I believe in God, but I don’t believe He’s necessarily involved in the minutiae of our lives. I really don’t believe He cares who we’re having sex with. I believe it is in us to be kind and rise above our animal nature, and that brings us closer to Christ, closer to being like God.
My faith (or whatever it is you want to call this) is unshaken, because I don’t think God was necessarily involved any more than God is involved in the changing of the leaves in Fall. I don’t believe that God will fix this except through the minds of brilliant scientists who will figure out a cure. I think things happen for a reason, but sometimes that reason is that you’re stupid and have made terrible life choices. And sometimes that reason is that your DNA is twisted and you were doomed from the get-go. I have ALS for a reason, and that reason is ..whatever it is that causes ALS. I don’t think I was given this disease as a challenge of faith or a chance to show grace, I think it just happened because sometimes people get ALS. We’ll figure out why some day. I’m not going to wake up magically free of ALS, and that’s okay. It’s not God’s fault. It’s not anyone’s. It’s just how the universe manifests itself.
Though I admit, I WAS cursing the universe a bit when I got shingles on top of all of this. Just a little. Cause…dang, man. Really?
Q. Are there really neat treatments upcoming that hold out some hope?
Stem cell research is going to be the key. If we fix this at all, it’s going to be through stem cell research. It’s what shows the most promise. Recent tests have allowed some early-stage ALS patients to recover a little bit of strength. And while some of that is controversial (spoiler alert: not all stem cell research involves embryos), I also believe that if the naysayers were diagnosed with ALS tomorrow, they’d probably be willing to inject fetuses straight into their spinal column if they thought it would keep them alive.
I don’t think we’ll find a cure in my lifetime – no, that’s not entirely true. We might find a cure in my lifetime, but it will never get through the FDA rigmarole in time to reach me before I die. My only hope is through participating in clinical trials, which will carry some risk, but even if that kills me, it provides a data point. Which is precious. And I really do believe we’ll figure this out. Some day ALS won’t be a death sentence, but I don’t think there’s any chance of that happening with me. And that’s okay. We’re working on it, it’s getting attention.
Q. What are your happy thoughts?
I am loved. Seriously. I am so fucking loved. It’s amazing. I would NEVER have thought in my whole life that I had this many people who cared so deeply for me. Any time this stuff gets to me, I can make myself calm down with the knowledge that there are people who would do anything to help me.
It’s a powerful thing, to know you’re not alone. And I know there are going to be days when that knowledge saves my life.
Kiss Me, I’m Dying
One of my very favorite, most used bits of gallows humor is the idea that the world somehow owes me something because of my disease. I call this the “Fuck It, I’m Dying” defense.
…Of course I don’t actually BELIEVE that, that would be stupid. Even though I know there are some terminal patients who do think that way, it makes absolutely no sense and that’s a ridiculous way to think. I present you my very very favorite poem ever:
A Man Said to the Universe
BY STEPHEN CRANE
A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”
POW. The world don’t owe you JACK SHIT, my friend, if you’re dying today or tomorrow or a hundred years from now. But it’s funny to think so.
Any time I think I might get in a little trouble at work, like I forgot to submit my monthly status report (OH MY GOD I TOTALLY FORGOT TO SUBMIT MY MONTHLY STATUS REPORT! SHIT!) my friend and coworker asks, “What are they going to do, fire a dying woman?” When we don’t choose where I wanted to go to eat, “Demand it anyway. You’re dying. OVERRULED. We’re gonna go get Mexican, bitches.”
I was talking tonight with my dearest Megan (who is awesome and you should BE so lucky to know her) about traveling for business, and sourpuss coworkers who just want to go to the hotel after work and not explore the city. Especially if you’re in another country! COME ON MAN, LET’S GO HAVE AN ADVENTURE. Megan agreed, “Yay, adventure! Demand adventure. Play the I’M DYING YOU HAVE TO TAKE ME ON AN ADVENTURE card.” I told her, “I LOVE that card!”
And then she said, “Okay, now I want to make you cards. Two-sided, business card, or maybe a little bigger, like an old fashioned calling card…One side: I’M DYING. Other side: miscellaneous demands.”
I’M DYING…
I DEMAND CAKE.
I DEMAND SEX.
I DEMAND KITTENS.
I DEMAND ADVENTURE.
I DEMAND FREE STUFF
YOU HAVE TO FORFEIT THIS ARGUMENT
TELL ME I’M PRETTY
BUY ME SOMETHING
CARRY MY SHIT
CARRY ME
I’m sure you all can help me think of other good ones. Let’s hear them.