You may or may not have heard of Exploding Kittens, a card game that was put on Kickstarter and broke all the records. ALL OF THEM. I backed this project, because I love one of the three guys creating it, and I’m sure I will come to love the other two after this. The game will be released in a bit, but in the meantime they’re looking for playtesters. The condition was that you had to make a video, 60 seconds or less, explaining why you should be picked.
And yeah I totally played the “I’m Dying” card. Literally.
..I can’t tell you how happy I was that I actually had a relevant card.
So I posted this, cause I’m hilarious, and shared it with my friends, and then it…took off. Like, so many people retweeted the link (Even the St. Louis Region ALS Association!!) and shared it on facebook. And I actually feel a little weird about having played the card now cause I might actually GET to do this thing. And it’s weird that I might get to do it because I am dying.
We had a huge moving/charity thingy sale last weekend. We could NOT have asked for better weather for it. It was warm, sunny, and beautiful. In the course of our three day sale, I learned some things:
1. People like slowly driving by sales and magically determining that your sale has nothing to offer. And sometimes even if they stop, they don’t bother turning the car off.
2. People will haggle over a $1 item, even at a charity sale.
3. If I had a dollar for everyone who inquired if my ladder were for sale, I could have bought a new one.
4. Dude who offered me “like, around twenny bux” for a $300 collectible KNOWS about Masterworks Replicas, man. He KNOWS.
Also, I was shown, yet again, that I have an amazing support network. Folks I haven’t seen in person in years showed up. People I’ve only known online showed up. Friends donated things to the sale AND bought stuff. After three days, we were exhausted and done and a little bit richer and a lot lighter in stuff.
In between the chaos and crowds, I watched things that used to belong to me become someone else’s. And rather than melancholy, it made me happy. It made me happy to see my Wishbone plushie go to a girl who knew who he was. It made me happy to watch a kid’s face light up when his mom said, yes, he can have that. To watch a woman buy a set of manga – in Japanese! – that I was sure no one else would want. At the end of each day, I looked at the garage, less full, and looked at my friend Danielle, running the show and doing ALL THE THINGS, and was so, so grateful.
The sale was born of grief and hardship. It is to offset the upcoming cost of a horrible thing, and to lighten my load for the move(s) to come. It was hard – SO HARD – to go through my things and decide if didn’t need that thing anymore, with the added implication of, “I don’t want someone to have to deal with this when I die so I’ll get rid of it now.” And I gave up some of my treasures because I knew they were useless treasures to me anymore, and they might become someone else’s. A new life instead of shoved in a box until my brother goes through my stuff when I’m dead. And so I let things go.
And I watched the teenager walk away, hugging Wishbone, and was content with my choices.
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.
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.
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.
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.
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.
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?”
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.
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.
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.
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 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
I’m sure you all can help me think of other good ones. Let’s hear them.
The hardest thing about my diagnosis so far has not been coming to terms with my own mortality.
It’s been coming to terms with allowing myself to ask for help.
To say I’m fiercely independent is a bit of an understatement. Its source is two-fold – I really hate imposing on other people for things that only benefit me, and I have a stupid deep-seated need to prove to the world that I can do it by myself, thank you. It makes it harder than necessary to get things done, sometimes. I’ll take two hours to show up to a party because I don’t want to ask another friend to drive ten minutes out of his way to pick me up when he goes. I’ll load myself up like a pack mule and walk home rather than ask a coworker “hey, can you swing me by the store tonight?” even though they’ve TOLD me they’re more than willing.
Two true stories:
I had a coworker friend who waited in his car in the parking lot while I ran in for some groceries, because I’d insisted I could walk to the store later, it’s fine, I don’t want to impose on you, I might take forever, it’s okay really, I can do this – so he insisted on taking me to the store and waited outside so I didn’t feel like he was hovering over me and rushing me while I picked up the things I needed. He’s super nice and I still feel bad about that.
My boyfriend at the time once berated me because I occasionally asked him for rides to the store – we’d been dating for over a year, he was living with me so the grocery runs were for our mutual benefit, and goddammit YES I WILL GIVE YOU A RIDE, just tell me we need to go to the store, woman.
My diagnosis has come with a very humbling lesson of “No, you CAN’T do it by yourself, actually.”
The truth is that I can’t carry boxes up the stairs anymore. I can’t walk the mile to and from the bus twice a day, every day. I have had to learn how to ask for help. My outer circles have been amazing at offering assistance – I’ve been told that friends are willing to come over and scoop my freaking litter box twice a week, if I want to set up a schedule. Grocery runs. Yard work. whatever it is, just say, and someone will help me do it. I just have to let them help.
I just have to ask.
The “I don’t want to impose” part of me is appalled at this turn of events, of course. Yes, they’re willing and they say they’re happy to do it, but…they’re going out of their way! For me! Just to take me to the stupid store! I don’t deserve to trouble them so much! The “I’m independent” part of me is learning to shut up as it’s proven time and again that not only is accepting help not a bad thing, it’s becoming mandatory. It’s dangerous, because I’m also lazy by nature, and so the temptation to just not do the things I don’t like to do in the name of saving spoons or whatever other excuse is strong. I hate mopping the floor. And I’ve got people willing to do it. But I CAN still mop the floor, so that independent side of me makes me do it, while I can, because the imposition side of me is mortified at the thought of making someone else clean up the cat puke. Eventually I won’t have the strength to stand up long enough to mop my floor. So I’ll have to ask.
So. The reason this is on my mind today, is that Danielle, my best friend and main babe, has set up a fundraising site for me. And she’s demanded asked that I link it here. This is a thing that is purely for me, to help with upcoming medical expenses and to cross a few things off of my bucket list while I’m still able to do them. The truth is, being sick in America is very, very expensive. Moving house is expensive. Buying and renovating a house for wheelchair access is expensive. Vacations are expensive. And while I have a job – a good job – I’m keeping afloat. But the time will come, sooner than I want to admit, that I have to leave that job and figure out how I’m going to live for the rest of my life on 60% of my income. ALSA says that it takes $200,000 a year to care for a person with ALS. That’s substantially more than the $700 or so I’ll be getting a month from SSI when I’m unable to work. I just can’t do it.
Danielle told me that I have her permission to tell you guys that she made me do this. And she did; this is something I’d never have done on my own. And I’m incredibly grateful to her, because I still haven’t gotten the hang of this whole “take care of yourself first and let people help” thing, and she’s been an excellent coach and an amazing guardian in that respect. She’s been really amazingly good for me. But it’s not entirely under duress; I’m also..just…asking. I admit I can’t be completely independent, and I must impose on the kindness of my friends, family, and complete strangers on the internet. I’ll put it up on the sidebar over there. I’d be grateful if you could help.
..Still liking the Ice Bucket Challenge videos, haters.
I’ve been SERIOUSLY overwhelmed at the amount of friends of mine who’ve done one and given me a shout-out. And most of them mention the Walk team.
OH MY GOD THE WALK TEAM.
SO GUYS. GUYS.
Okay. When I signed up for the Walk to Defeat ALS, I didn’t expect much, really. I thought a few friends of mine would join me, maybe kick in a few bucks. When you set up your account, they suggest you shoot for a target of $210. I knocked that down to $100, figuring it would be far more realistic. And instead of the automatic team goal of $2k, I knocked it down to 1. This was a lofty, pie-in-the-sky ideal though, I never expected to actually reach it. I’d have been happy with reaching $300 across my whole team of maybe 8 individuals.
I have 26 people in my posse. And we’ve raised $5 short of *three thousand freakin’ dollars*.
As I said in the last post, there are dark days. But they are so few and far between, and a lot – A LOT – of that is because of these things. I am CONSTANTLY shown that there are people who love me, people who are willing to help, people who want to support me somehow. It’s amazing, and I am humbled, and so so fucking grateful. More than I could POSSIBLY hope to convey.