Tag: speechless

Faith Versus Proof

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Hey. So…

…First and foremost I apologize in advance, because this is going to get very exclamation point heavy and rambling. I can already tell. I know the gist of what I want to say, but not quite how I’m going to get there. I’ve spent a lot of the past four days completely speechless. In the best way. In a way I never thought possible.

So I guess I will start with reiterating that I am – and have always been, and almost to the level of naivety – an optimist. Even on my way to the appointment in which I was diagnosed with a terminal disease, I felt to my core that things are going to be okay. On my way home from that appointment, I still felt that way; although my definition of okay had changed. For all of my life, and especially for all of this shitty journey with this sucky disease, I knew – KNEW! – my tribe would rally when I needed them. My anxiety lies to me every day, and it lied so much harder and longer when I was younger about the tribe I had; or specifically, that I didn’t have the tribe I thought I did. I knew I was loved, of course, but my anxiety loves to tell me that I don’t have the level of love and support that I would like to think. Once I was diagnosed, that particular anxiety has fucked off forever because my faith in my tribe was swapped for concrete proof. People I didn’t even know very well showed up out of the woodwork to help. People it never even would have occurred to me would show up, did. In full force and with open hearts. When I had to leave my house and cram my life into a much smaller apartment, the core optimist in me knew I would have some help when I asked for it. Concrete proof arrived in the form of 14 friends showing up that day.

I am loved and I knew this. I am loved and you proved this.

I’ve kind of always been a mom friend. Caretaker. I considered it my job to make sure that my friends were okay, basing so much of my pride on my own self-reliance. I am the helper, not the helped. I knew I had people I could rely on for help, but I focused so much of my life and energy on proving to myself and to the world at large that I didn’t need them to. That has been the singular hardest part of this whole stupid disease so far. Admitting that I do in fact need them to. Will in fact increasingly rely upon them to. Will be completely unable to do anything by myself, at all, at some point. My life will become nothing but relying on other people. That’s been the worst part. Not losing my ability to walk, not being unable to control something so basic as my bladder, not losing my job, but knowing that I am going to be completely, utterly helpless. My strongest personality trait, my core sense of identity and pride, taken from me. It’s suuuuuuuuuper shitty.

In the early days of my diagnosis, I had Danielle. Thanks to her, in the early days I didn’t have to ask for anything because she asked on my behalf. We both knew that everything about this disease was going to be expensive, and she set up a CrowdRise fundraiser on my behalf. She organized my garage sale amazingly. Seriously, we had complete strangers complementing how well organized that sale was. It was really pretty amazing and made me a fair bit of money. Money used for moving expenses, and then lawyers fees, and then we stashed the rest away for the next inevitable crisis. Eventually CrowdRise kind of went defunct and became nonprofit only, and that account got closed. Over the last year or so, a few people have asked what happened to it because they had wanted to donate and were unable to. I could never quite bring myself to reopen that account because it was… You know, asking for help. It was something I always meant to do, and knew I probably would someday, I just needed to ask for help with it.

HAHAHAHA ASK FOR HELP. HOO-BOY.

Six days ago on Facebook, I made a post about these amazing mourning bracelets I found online. In the post I said that I was budgeting to hand these out at my funeral. And I am! Because they are amazing and important and you should totally check out that link. But in the comments for that post, along with many of my friends agreeing that the idea was amazing and awesome and worthy, a friend I’ve known forever mentioned again that I really ought to have some kind of fundraiser going. I’m budgeting for my own funeral, and they would like to help. Several friends chimed in to agree. My amazing friend Megan, who had taken over the account from Danielle when that relationship broke apart, hit me up to ask what I would like to do about it. She was happy to set a new one up for me, but she’s in Seattle and I’m in Portland and she would feel much better if the account were handled by someone locally. Which makes a lot of sense; I agreed with her that if some disaster were to befall me (like, as I explained to J later, my van breaking down and suddenly needing hundreds of dollars in repairs, for instance) I would need money right away and couldn’t necessarily wait for a bank transfer.

(In retrospect, I jinxed the fuck out of myself with that one, huh?)

We looked at local laws, and disability regulations, and Medi-Cal requirements and came to the conclusion there was really no reason for anyone to handle any aspect of the account but me. So, Sunday I went about resurrecting an old bank account that had sat idle since my mortgage payments. That took a lot of doing, as they’d put a hold on the account for lack of use, and apparently I had not changed my address with that bank and they have been happily charging me five dollars a month since April 2016 because my mailing address was wrong. Even though my account is paperless? And literally has always been? And they made no effort to call or email me to tell me they were charging me for having the wrong address for all the shit they’re not mailing me anyway? I’m in the middle of arguing with them about that one. Banks suck. Regardless, the account was now open and free to use, all I had to do was set up the actual Gofundme and post a link somewhere.

Yep. All I had to do.

So easy, right?

Just… Create the account. Post a link.

Ask for help.

And you know, that’s probably where it would still be sitting if my van hadn’t blown the fuck up. On my way home Monday night in the back of a medical transport unit, unaware if my van was going to require $200 or $2000 worth of repairs, or if it was repairable at all, I knew I had to set up the fund. That night. So I did. I created the fund, updated the link here on my blog, and then posted a link to it on my Facebook page with the words “Okay. It’s set up. Do whatever you like with this information. <3 I love you.”

Within one hour, I had three donations and 18 shares.

Within 24 hours, I was halfway to the arbitrary goal of $5000 I had set. I bumped it up to $7000. 24 hours later, I was halfway to that, too. Within an hour, I had my first donation containing triple digits. In three days, I was getting donations from complete strangers because my friends had shared the link. Yesterday, a very good friend I’ve made through a perfume decanting group of all things shared the link in that group, generating at least five donations just from that. Several friends with birthdays this month shared the link with their friends and family asking for donations on my behalf instead of birthday presents. (seriously you guys should have held out for a pony or something) Relatives of my friends who have heard my friends speak highly of me have donated. As it is right now, the generosity of my friends has netted me over $4000 and 450 shares.

In only five days.

This. This is where the exclamation points are about to happen. This is where the proof versus faith happened. I knew I would probably get some help once I was bold enough to ask for it. But this.

THIS.

THIS HAS BEEN SO OVERWHELMINGLY AMAZING!

HOW THE FUCK DID I GET SO LUCKY?!

WHAT! EVEN! IS! MY! LIFE!

OH MY GOD, EVERYONE.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m not the sort of person who happy cries much. In fact, every single time I have done, has been directly because of some show of grace and generosity and love related to this disease. The kindness and love of my friends has brought me such emotional satisfaction and security, the likes of which I never would have known had it not been for this stupid disease. My faith said that if my life should turn to shit, my friends would have my back. Circumstances have proven that faith accurate and just – time and time again. But this.

This!

This is been so much more than I ever could have anticipated in my most optimistic of dreams.

I could fill the rest of this blog for all time with just the phrase “THANK YOU!!!!!!!!!!!!!” over and over and over, and it would hardly be sufficient to express my gratitude. My love. My faith, absolutely justified. My awe at having so many amazing people in my life. My feeble attempts to somehow live up to all of the amazing and kind things people have said about me in their shared posts.

This is my blog, but tonight I lack proper words to put in it.

My life is so fucking magical.

Thank you.

Thank you all so much for your love, your generosity, your jokes, your grace, your friendship, your very existence in my orbit.

That’s it. I don’t have any clever way to wrap this up. I will now resist the temptation to copy paste “THANK YOU!!!!!!!!!!!!!” a million times.

I love you all so much.

Moved

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Last Saturday, the hottest day of the year so far, I moved from the Zombie Tramp House to my 2 bedroom, 1 bath apartment. The Zombie Halfway House of Ill-Repute.*

I had a whole gaggle of people show up to help. I was as prepared (stuff-wise) as I could possibly be for the event, disease and time permitting. Though still not as prepared as I’d have liked, I’ll grant you. I have a personal pet peeve about showing up to help someone move and they’re not even ready to do this thing. Like…I’ve had to do dishes, then pack the dishes, then move the dishes. YOU KNOW THIS EVENT IS COMING UP. PUT YOUR SHIT IN BOXES. IT MAKES IT EASIER AND HELPS YOUR SHIT NOT TO GET BROKEN. Some last minute things and cleanup is inevitable, but OH MY GOD PEOPLE WHY IS YOUR CLOTHING NOT IN BOXES YET. I try really, really hard to not be that person. So not only was most of my stuff in boxes, it was pushed out in to the hallway when I could, to make maneuvering as quick as possible.

And it worked! The guys (and gal) had everything in the driveway and front room, ready to rock, by the time we got back with the truck. I had a lot of friends work hard in stupid heat, and I was done in record time. I got the truck at 10:30, it was back to the U-Haul before 3. One last round to get the cats and all my groceries, and then I was all moved! With an hour to spare to get ready to go see Eddie Izzard perform (PROTIP: GO SEE EDDIE IZZARD PERFORM. HE IS A MAGICAL HUMAN BEING MADE OF UNICORN RAINBOWS AND SARCASM).

And Sunday, I was alone in my new apartment.

…which was the problem.

I had been frantically preparing for this move for a few weeks. As much to not be that person, as to keep my brain busy. Don’t think about it. Don’t think about the house being sold. Don’t think of your dream home in someone else’s hands. Don’t think about this being the first major loss to ALS. Don’t think about the sheer magnitude of work that’s going to need doing to find the next place. Don’t think about THAT place as temporary, too. Don’t think about this being the last Saturday you will ever sleep in at the house you own. Don’t think about this being the last time you’ll have to clean your kitchen floor. Don’t think about this being the last shower in a house you own. Don’t think about it. Don’t think. Don’t.

Sunday, I crashed. Left to my own devices, and with sweltering heat besides, I slept a lot. I went out for brunch with a friend, with the intention of going out and running errands and buying things that I needed for the new space, but found myself falling asleep at the table when he went to the restroom. He brought me back to the apartment, and I slept some more. I moved some furniture around, hooked up my TV and made my bed, and slept.

I called off work Monday. “I wrecked myself,” I told my coworkers in an email, “clearly I should have chiggity-checked myself.” And then I slept. I woke around 11AM, answered an email from my realtor, rolled over, and slept. 4PM I woke, with the intention of putting my PC together, and stared at my desk for 10 minutes before just sort of…collapsing out of my chair in to a heap on the office floor and lying there for probably twenty minutes, just staring at the wall. I went back to bed. 7PM I woke up, used the bathroom, fed the cats, unpacked my socks and underwear, and went back to bed. I just had no power to do anything else.

I’m not stupid, I know what depression is. And this? This is it. After all of everything, and a REALLY shitty week last week, I finally crashed and depression grabbed me by the jugular and shook hard. And I bled out and slept.

It’s still there, very much, but I managed to get to work today and do some things. My body is so fucking TIRED but my mind is going a million miles a minute. The sale is not quite final, there’s last-minute fuckery going on. I’m not quite out of the house yet, there was still some storage stuff and a couple of fans and cleaning materials, and then I have to clean everything up to make it presentable to its new owners, just as I’d wanted it presented to me but got a filthy house full of broken and useless shit instead. So much unpacking to do before this apartment is even navigable, much less livable. And so much to do after that before it’s mine. I have medical forms to fill out and new bills to pay and addresses to change. This afternoon, sitting at my desk at work, I cried, overwhelmed at how much was left, how much I had to do, and wishing someone would just fucking DO it for me.

I got a voice mail from some inspection company to reschedule an inspection I didn’t even know was happening at my house. That I still own. They’re doing work on the Zombie House to prep it for the final sale, now, and apparently the buying broker doesn’t think it’s necessary to actually let the owner of the house know that strangers are going to be there, working. I chatted up Justin, the Wunderbruder, and asked him when he was free to help me clear out the rest of the stuff at my house, to make the last storage run. He said he’d already moved all the straggler stuff into the garage, and just needed to sweep it out.

I said he was amazing, and he said Nope. Just a crazy white guy.

I told him it sounded like he had it mostly sorted out, and asked if he needed me; he said, “My thought was to bring to your place what goes there, get the storage key and code, stop back by the old house and get the remaining stuff out of the garage.”

And just like that, my brother had already sorted my shit and had a plan and I didn’t have to do ANYTHING.

“That way,” he said, “you can focus your energy on your new place.”

And I fucking cried. Totally lost my shit at my desk in front of my Sea-Monkeys and everything. Because he was an answer to my desperate prayer. I didn’t have to do anything. I didn’t have to ask. And I can’t even tell you how much that allowed me to just…fucking…BREATHE. For a minute. For a couple of minutes.

He has my back. I never doubted this. All of my friends have my back. I have never doubted this either, though this weekend was serious and hardcore proof. But to have him here, to have him step up and just…fuck. Just. Fuck. Without even….fuck. I can’t even tell you. Grateful. SO fucking grateful. He quiets my brain and I know I’m taken care of. And every time I tell him he’s amazing, he says, “Nope.” But he lies. In my darkest moments, I know I can pull through this because of the love of the people surrounding me. I don’t know what I did to deserve this much light, and this much love, and just..fuck. Yeah. So much love. And gratitude. And just…fuck. All of it. Everything.

Sometimes angels are real. Even if they used to punch you in the head when you were kids.

*That’s from a Dresden Dolls lyric. I’m not that clever.










Life, Death, Something in Between

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Metarie Cemetery, NOLA

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.










Followup to that last thing

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

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

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










Beyond a compliment

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

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

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

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