A Humble Request

I’d like to formally ask all of you guys to do something that you really ought to be doing anyway:

When you wash your hands, and splash water on the counter, wipe it up.

Again, you should be doing this anyway. But I ask this of you, because I can’t support my own weight on my own two feet anymore, so I have to lean against the counter to turn the faucet on to wash my hands, so I get a big wet line across my gut. And my hands don’t work very well, so I usually have to lean on my elbows to get them under the water and rub them together to soap up, so now I’m also wet to the elbows.

Just, dry your hands, then run that towel across the counter before you throw it away. I promise it’s not hard. I’ve always done it, when my body worked like yours does, so I know it’s possible.

Thanks, darlings.

How to Help in Three Easy Steps!

Howdy folks! Brought on by a recent incident, which I will tell you about in another entry, the question was once again asked, both directly of me and in a general forum:

WHAT DO I DO WHEN I SEE A PERSON STRUGGLING WITH THEIR HANDICAP?

Maybe you just saw a blind person attempting to cross the street and having a hard time. Maybe it’s a person in a wheelchair having a rough time pulling something off a store shelf. Maybe you just witnessed me try to get up in to a tiny-ass unstable boat and fail miserably in front of Anne Wheaton in Loreto, Mexico. Whatever the incident, there is someone with some obvious difficulty in life trying to do A Thing and you’re not sure how to proceed. Well, as a public service announcement, I’m here to help.

There are three easy steps*.

1) OFFER YOUR HELP.

Seriously, you’d think this was obvious, but the Bystander Effect is a real thing and you’d be appalled at how often no one says or does anything. Don’t be a grandiose dick about it, just approach the person and offer a specific way you can be of help, or ask if there is something you can do. “Hey, can I grab something off the shelf for you?” “Do you want a hand across the street?” “The boat crew clearly have no fucking idea how to get you off the ground, how can I help get you up?” DO NOT – UNDER ANY CIRCUMSTANCES – ENTER PERSONAL SPACE TO HELP WITHOUT ASKING. Hooooly HELL you would think this is common sense, but I wonder how many blind people have someone just fucking grab their arm and start pulling them across the street. Just ..don’t do this. Don’t start trying to haul me to my feet when I’ve had a fall. I need to muster strength for the attempt, for one, and it’s just incredibly invasive to have a stranger start grabbing at you when you’re already at a very vulnerable moment. Politely announce your presence and ask if you can help. And then…

2) ACCEPT NO FOR AN ANSWER / ASSIST WITHOUT MAKING A BIG FUCKING DEAL ABOUT IT

Sometimes the answer will be “No, thanks.” Accept this and move on. This person’s difficulty is not your Heroic Moment; they are not here to provide you with your Good Deed For the Day. They’re just trying to get some shopping done/cross the street/get on the goddamned boat/live their life like a normal person, and are under no obligation whatsoever to accept your help, even if everyone in the world can see it would be so much easier if they’d just get over it and accept the help. Graciously allow them to decline and move on with your day.

Alternately, if they accept your help, Do the Thing. And give zero fucks about it. Don’t make a big show about helping; just grab the whatever for them, help them across the street like it ain’t no thang, whatever. They will say thanks. Tell them it’s no big deal and believe that it is not. I, for one, would be so much more willing to accept simple assistance from strangers if people were extra chill about it, but usually they act like a big damn hero about the whole thing and I’ve suddenly become someone’s Inspiration Porn and I can already HEAR them telling their spouse when they get home about how they helped a woman in a walker pick up her dropped purse. Just pick up the fucking purse and hand it over and go on with your life. You’re not curing cancer, here, you’re just holding a door for someone who can’t walk.

Whichever option was chosen, the next step is the same….

3) PRETEND THE WHOLE THING NEVER HAPPENED

Most important. THE MOST. If it was a routine thing that you might have done for anyone, like opening a door or helping someone get something from a shelf, then it’s already no big deal and a part of life. Move on. If it’s something like a fall recovery or an unexpectedly needed assist (hello, hands suddenly not working so I can’t swipe my own fucking debit card!), then it’s almost certain that the person in need of help is embarrassed by the unwanted attention already. It’s humiliating to fall on your ass even if there isn’t a disability involved. Whether or not there was a celebrity watching. It’s ALWAYS my most fervent desire that the whole thing would be forgotten immediately. This also ties into the whole “I’m not your good deed” ideal, but primarily? I’m embarrassed to have been caught publicly in a weak moment, whether it can be forgiven due to disease or not. Act natural. Make sure they’re okay, and then forget the whole thing. Please. Don’t make some weak-ass joke, or reassure me that it’s okay and natural, just..pretend it never fucking happened in the first place. Whatever’s whatever, man, no big thing, not even worth mentioning. EVER. AGAIN.

That’s it!

OFFER, ACCEPT/ASSIST, IGNORE.

The only miiiiiiiinor correction to this may be to ignore that I said no thanks and it turns out I DO need some help. Then you may add RESIST, as in RESIST the temptation to say “I told you so” when I accept that I do need assistance after all. I’m still learning my own limitations, and they change every day. be patient with me in this, and I will be patient with you as you learn The Steps. We’ll help each other out, okay?

*Your mileage may vary. Some disabled people are total assholes about this sort of thing. This is just what I think is most useful, for most people.

Death Cafe

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

Today I attended my first Death Cafe.

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

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

FUCKING AWESOME, RIGHT!?!

…Damn right I got her contact info.

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

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

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

It’s almost as good.

Aftermath

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

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

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

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

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

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

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

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

And through this, I gained incredible insight.

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

DO NOT PUT OFF SETTLING YOUR FUCKING ESTATE.

WRITE YOUR MOTHERFUCKING WILL.

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

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

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

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

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

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

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

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

DO IT. NOW.

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

Get Your Shit Together.com

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

ALS:FTS Video Blog Thingy Numba Seven: EXCITING NEWS YO

Clinic Day! Also, should you send me that article about ALS? (Spoiler alert: yes you should) Promising research! How my disease is progressing. And some VERY EXCITING NEWS. Like, I am nearly in tears for pretty much this entire video because I am going to lose my shit I swear to God you guys.

Rainbows and Rememberances

It’s been an introspective week, monitoring my stress levels and emotional energy and seeing where I’m at, really. Looking at that last entry, I’m baffled at the strength of my rage over that image. It’s certainly infuriating, and something I feel very strongly about, but the instant passion of my anger isn’t something that’s happened before. Looking at it now, it angers me, but it’s nowhere near the level of pissing me off that it was before. I don’t fully understand why it affected me so strongly, so instantly, and so darkly.

Something for my therapist and I to work on.

Today I found a link on my Facebook feed to a blog post about my friend with ALS who chose to end her life. It is a photographer who connected with her and documented the end of her life, the days leading up to and the actual end. Llewellyn Gannon’s photographs are beautiful, personal, and intimate. Her story gave me closure I didn’t have before, to know exactly how things happened, something more than a final farewell post from my friend on Facebook.

She chose to die surrounded by her loved ones on a beautiful April afternoon. I can’t think of a better way to tell her story, and to show why Death with Dignity is so important, than Llewellyn already has with her pictures and her words. So I will simply link it here, and warn you that there is death, and beauty, and nakedness, and fragility, and love, and power in these images. Proceed with an open heart.

http://www.llewellyngannon.com/she-had-the-right-to-die-1/

Thank you, Sherrie, for showing me the way, and thank you, Llewellyn, for your art and your love and your generosity.

Not even going to mince words here.

Fuck everything about this image. Fuck the message it conveys, fuck the people who made it, fuck the president of the stupid fucking website it came from.

suffering is not beautiful
suffering is not beautiful

I’ve ranted about this before. And I will again. Because every time I hear something like this, every time I see something like this, I am filled with a rage indescribable in its intensity. I am sitting here, sobbing, because I’m angry. Because I’m afraid of someone thinking they have the power to make this decision on my behalf. And because I can’t make them understand. Short of committing an act of extreme violence or wishing something horrible to happen to a loved one to present them with the opportunity to reconsider their opinion, I am completely unable to make them understand how fucking HATEFUL this is. I want you to look at a dying woman with inoperable cancer and tell her how lucky she is to participate in the passion of Jesus Christ.

In my rage, I typed, “Let me stick a knife in your guts and then while your stomach acid digests you from the inside out, you can tell me how beautiful your suffering is.”

There is no grace, no beauty, and no “opportunity” inherent in terminal disease. There is nothing beautiful about starving to death because you’re unable to eat. There’s nothing graceful about shitting your bed every day. There’s no opportunity to be found while trapped in a shell of meat you’re unable to control, no opportunity when you’re in a hospital bed wracked with pain that the strongest drugs can’t touch, no opportunity while your memories and self slip away until you’re nothing but a meat robot that looks like someone your friends and relatives used to love.

We FIND grace, beauty, and opportunity in dying because we must. Because we have no choice but to laugh at pain, to smile at death, and to accept. Because we can not fathom a world in which suffering is for nothing and pain has no reason or purpose. And when all hope for life is lost, we find a new hope in allowing an end to the torment. In accepting our own death, at last, we find grace in deciding when your limit is reached, beauty in allowing the suffering to end, and opportunity to end things on your own terms, in your own way, in your own time.

Enjoy the life you live, that you are allowed to have such a hateful opinion because you have no idea what it’s like to be close to someone who wants nothing more than a quick end to their inevitable, pointless suffering. Praise Jesus that you don’t have the opportunity to make this decision for yourself because you’ve still got a life ahead of you. And enjoy that you have the opportunity to think you are entitled to make this decision for others.

Because you don’t.

You really fucking don’t.

Attention Developers!

So, you can now totally play with Stephen Hawking’s voice software:

You Can Now Use Stephen Hawking’s Speech Software for Free

I really, really hope the world takes this and does amazing things. The best and brightest technology always finds its best use in the hands of public developers, so many amazing things created that were not even THOUGHT of by the device creators. If you couldn’t tell, I’m a huge fan of open source, and I’m an ardent worshipper of public projects. Someone out there has something brilliant to make, someone can take this software and make it do something so far advanced we never even CONSIDERED that it was possible. Someone is going to take this tool kit and make ALS so much easier to deal with we’re going to wonder how we did without it in the first place, and I’m waiting.

Let’s make something cool.

Spoiler Alert: #everyonedies

Today’s post comes with story time!

Story one:

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

“OH no, did you hurt yourself?”

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

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

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

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

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

Story Two:

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

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

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

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

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

“Well, everyone’s dying,” he shrugs.

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

The Rant

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

Please.

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

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

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

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

But I don’t want to.

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

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

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

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

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

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

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

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

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

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

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

YOUR PAIN DOES NOT DIMINISH MINE.

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

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

Everyone dies.

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

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

Controversy and Community

I attended a symposium on ALS research today. As a result, my brain’s kinda full. Full of information, full of renewed energy to be a part of the solution, full of the obligatory introspection.

Oh, introspection. The knee-jerk “how does this all affect me” reaction to Serious Things.

So I apologize if this point is disjointed. My brain is random today and I’d really like to write up a full thing about the symposium and everything involved with it, I know that I probably won’t be arsed to do it. So instead, I’ma just barftype what’s on my mind. You’re warned. Two things come to mind, though, two main ideas that went through my brain repeatedly as I listened to three very, very smart people talk about advocacy, research, and a promising drug therapy, in their turns.

One? Thank god for science. Jeebus Christmastime flapjacks. The third speaker, specially, spoke about laboratory mice and their contributions, and the second spoke about stem cell therapy involving foetal spinal stem cells. Both highly controversial. Live animals, dead babies. Dead *potential* babies, I suppose, depending on your beliefs and politics. I don’t care to get into that. What I DO care about is how fucking USEFUL these research methods are, how sometimes really horrible things produce really amazing and life changing things, and how every day those decisions must be reevaluated. “Sacrifices must be made” is such simplistic bullshit, but I can not fathom how we’d get on without some of the amazing research and therapies and information that comes out of doing things not everyone agrees with.

I firmly believe that even the most staunch OMG DED BABIZ U MURDRER SINETISTS BASTURDS protester, if diagnosed with fast progressing ALS and told “there is promising research that may lead to a halt or reversal in your symptoms” will probably suddenly think that well, okay, maybe just ONE dead baby. That would be okay. One dozen babies in my spine to keep me walking and alive suddenly doesn’t seem so bad, I mean…Just as “NO YOU MUST LIVE WITH WHAT GOD GAVE TO YOU” might think differently about assisted dying. Until you are personally affected, until the decision could conceivably have some import to you personally, your opinion doesn’t carry much weight. You really, really don’t know, CAN’T know, what you really believe until it’s challenged and you face some really fucked up choices. While you’re safe from the consequences of that decision, you probably shouldn’t be allowed to make decisions for people who ARE affected. I’m looking at you, old white guys making reproductive rights decisions for women. And you, PETA person. If your kid had cancer, and I told you that 2000 mice have to die in order to give your kid a chance to live? I bet you’d be suddenly less enamored of mousey rights. Maybe skip the hypotheticals and ask people who actually DEAL with the consequence.

*stepping off the soap box*

Oh, idea one point five – saint preserve us from everyone who has “read an article”. Especially off of the internet. You guys pipe down, too. The three panelists do this for a living. They’ve probably read that article. There’s a reason it’s not called out in the slides.

Point two, and the main one, is amazement at the sense of community with ALS peeps. I have met, and kept in touch with, and care about, people I’d never in my life have met otherwise. I’m antisocial (despite what Danielle says (or at least highly socially avoidant)) and it was a bit weird to come to the symposium today and know some of the people there. Simply because we’ve been similarly touched by a disease. Nothing else in common. Just..yeah, I have this disease too, ain’t it shit? Diagnosis comes with an education, and ALS particularly comes with a community. People I see so infrequently, and yet we have something that connects us on a level that no one else could possibly share.

I learned today that a disease is considered “rare” if less than 200,000 Americans have it. The number thrown around for ALS is usually 30,000, but I also learned today that the ALS registry puts it at more like 12,000. That’s really not many. My employer has 17,000 employees in my area, for example. All Americans with ALS are outnumbered by people working in one metro area for one company. So when you find someone else in your area that even remotely understands, you take note of that person and make an effort to keep them around. There’s nothing like being able to share on a deep and intuitive level what you’re going through. Because even though other people might understand on a theoretical level, it’s a completely different thing to find someone that you can just make eye contact with and say, “Fucking ALS.” and they say “yeah.” and …yeah, to their very SOUL they know exactly what you mean. Because fucking ALS. And because you know how shitty it is, you feel similarly compelled to help someone else in the same position to make their situation suck less. So you stick together, and exchange ideas, and cry for each other, and celebrate the triumphs of perfect strangers with whom you only share one horrible, horrible affliction.

So I guess I have a better understanding of why Harry Potter/Supernatural crossover porn forums exist.

A is for Awareness

May is ALS Awareness Month.

Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.

It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.

This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.

I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.

I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.

I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.

I’m aware of how cheesy that sounds.

Don’t care.

Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.

Thank you all for being a part of it. I love you. I hope you’re aware of that.

Vocabulary

In addition to changes to my lifestyle, I’ve made changes to my vocabulary. I thought maybe you would like to know these words, too, because they’re verbal shortcuts, easy ways to explain something, so long as the person you’re dealing with knows these words, too. So! Some of these are specific to me, and I realize that people reading this might not understand. Then there are some that are REALLY useful in dealing with terminal diseases, and the people who have them. It includes reading other pages. That’s right, I just gave you homework. Deal with it. *sunglasses descend*

MY WORDZ, LET ME SHOW YOU IT:

Godzilla Disorder/Disease
This is how my friends and I refer to ALS. It got that name before I knew what it was, it was just a better phrase than “whatever the hell is wrong with me”. My main babe Danielle came up with it, as I was trying to figure out what to tell people when they asked why I was limping. “Just tell them you got attacked by Godzilla. In the legs.”

Get-Ups
These are different than spoons (definition of that to come). There is a specific number of times I can get up, out of a chair, out of a car, off the floor. Once I’m upright, it’s fine, but the effort of getting up takes more out of me than a lot of other activities. It’s like…it takes more gas to stop and start a car at a stop light than to leave it idling. Same principle. Once I’m standing, it’s fine, but there are only so many times a day I can get my ass vertical.

General Vocabulary, reporting for duty, SIR!

Silk Circle
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
If you only read one thing from this list, it needs to be this. This is how to behave when someone is having a hard time. This is how trauma works. Comfort in, dump out. THIS IS IMPORTANT. There is no better way to put this, and no better way to behave.

Spoons

The Spoon Theory written by Christine Miserandino


This is basically the idea that a terminally ill, or chronically ill, person has a very specific allotment of daily energy units. Mana, if you like (you nerd). You spend these points throughout your day, and when they’re gone, that’s it. Game over. You think “Going to work” is one unit. But no. Every little thing that you don’t even think about (getting out of bed, brushing your teeth, put your clothes on) takes one point. It’s good language to check in. “How are your spoons?” “I’m kinda running on a spoon deficit today, sorry, I can’t go.” “Are you gonna have enough spoons to do all that?”

Also? she totally stole a spoon from that cafe.

Holding Space

What it means to “hold space” for people, plus eight tips on how to do it well


This is a relatively new one for me. I haven’t talked about it here before. This is the idea that sometimes, the absolute best thing you can do for someone, and usually the HARDEST thing to do, is hold space for someone. Just stand by, and be available if they need you. Don’t interfere or get involved if they don’t want you to. Just be on standby for when they do. It’s really hard to stand by and be non judgmental and simply offer support; but I want you to know that it’s the absolute best thing you can EVER do for anyone having a hard time. Just, say you’re there to help, and then back off. Hold space for me. And I’ll hold space for you. I can’t promise I’ll be perfect at it, I’m still learning. But I’ll do my level best.

There are certain to be words to come. There are always new things. New swear words, if nothing else.

Chemical Defendants, See.

I imagine a lot of people out there share my weekly regime of tipping pills from many bottles into little plastic containers that mark the days by day and night. Times were, I took nothing (though my recurrent anemia said I really ought to be taking iron, and my living in Oregon says some vitamin D would be good). Occasionally I’d get a wild hair and buy some supplements and taking them maybe a week or two before I tired of it. I don’t have the luxury of tiring of it and setting the pills aside anymore, so once a week, I pull many bottles off of the apothecary shelves, and count them out into little daily pods.

Drugs, man

9 in the morning. Gabapentin (twitches/cramps), riluzole (the only ALS drug), buproprion (for depression), armodafinil (for energy), citalopram (for anxiety), ranitidine (for heartburn caused by these pills), vitamin D (for missed sunshine), coconut oil (because maybe it helps, studies are out). Usually magnesium (for muscles and nerves), but I’m out of it just now.

At 2PM, another gabapentin.

When I get home, another riluzole and buproprion. Also vitamin C, iron, and a multivitamin (because you know why). Yes that is a children’s chewable. Deal with it.

At 10PM, another gabapentin.

5 of these are to deal with effects of ALS. One is to counter the effects of the drugs I take to deal with the effects of ALS. And then supplements, because my body needs all the help it can get. So many pills, and I have never calculated how much this costs me per day. Maybe I ought to. I’d probably be afraid. And then there’s the three optionals I have; cyclobenzaprine (for really bad headaches and stress tightness), lorazepam (for when I start to freak out), and zolpidem tartrate (for when I can’t sleep). I don’t take those very often. The cyclobenzaprine (flexeril) is an emergency maneuver – I’m prone to headaches and this is for when they last for days and for fucks’ sake I just want to relax and sleep. The lorazepam (ativan) is usually taken as a preventative when I am going in to a stressful situation (why hello, legal paperwork regarding my death) or when I have panic attacks. And I’ve had the zolpidem tartrate (ambien) on prescription for ages because I sleep for SHIT. But I rarely ever take it, one bottle of 30 of them lasted me nearly 6 months. They’re also an emergency maneuver (hello, trying to fall asleep with CPAP for the first time), reactionary rather than preventative.

And there is another one out there. A possible addition to my chemical combination.

It’s called GM604. There has been a very limited trial, it’s still crazy early, but they’ve shown it to slow the progression of the disease, and even one specific trial showed a minor return of ability. As you might expect, there are a lot of people trying to get it fast-tracked through FDA approval. There’s a petition here, and a Google Group here. The company producing it is called Genervon, which sounds like something Transformers use to make new Transformers. They’ve been keeping the world aware of their progress through press releases.

At the moment, Genervon is awaiting a decision from the FDA. If they’re approved, GM604 will be available and covered by insurance. If they’re not, they must continue through Phase 3 trials, which even at an accelerated rate that the FDA has promised will still take 3 years. Which means most of the people alive with ALS today will not live to see it. There really hasn’t been enough evidence, though, that it works. There’s enough evidence to prove that they should keep studying it, and have further trials, definitely. But not enough to prove it works.

The MS/ALS news magazine, the ALS Therapy Development Institute, and The Robert Packard Center for ALS Research at Johns Hopkins (yeah I totally cut and pasted that from the website) and many many others are watching this with cautious optimism, but not committing to either endorsing or condemning the drug. They want more trials to make certain it’s safe.

“Wait and see.”

“But we QUITE LITERALLY DO NOT HAVE THE TIME TO WAIT,” says just about everyone with ALS or caretaking someone or in the Silk Circle somehow. “GIVE US THE DRUG.”

“We don’t have enough tests to prove it’s safe,” says the FDA.

“What’s it gonna do,” ALS peeps say, “kill us!?”

And so the world waits. Maybe this is a miracle drug. It’s certainly not a cure, but it may be a substantial step.

Next stop: someone stealing the formula from Genervon and producing it in Mexico. Cue many, many ALS peeps taking vacations in Mexico. Because they just want to live awhile longer and will risk anything to get it. Their life is literally on the line.

I don’t know how I feel about it either way, to be honest. My progression might be slow enough that I’ll live to see the results of that trial. But I also fully identify with wanting to take a chance, if it means more time. More ability. More quality of shortened life. I’ve already said I would participate in trials, and I meant it. If I can create clinical data for this drug by taking it and checking in with doctors, sign me up. If it kills me faster, well, now you have a data point. And if it doesn’t, you also have a data point. From a medical trial standpoint, you win either way. From my standpoint, I might come out better than I went in. Or I might die, which I was going to do anyway. I definitely want to see more testing. Either controlled by the FDA or released into the wild and see what happens.

I’m excited that there is SOMETHING happening, in any case. Even if it’s potentially one more pill in my cases.

No Comment.

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

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

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

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

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:

Because ALS isn't going to stomp itself out.
Because ALS isn’t going to stomp itself out.

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:

Matt the Majestic

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.

This is What A Lucky Girl Looks Like

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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.