Tag: Danielle is my main babe

Complicated

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“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” -Terry Pratchett

“Complicated.”

It’s become my go-to phrase when people ask how I’m doing. “Life is complicated.” Check off that box on Facebook, I am officially in a relationship with ALS and It’s Complicated.

Nothing is simple. Everything is terrible, and everything is wonderful. I am cursed and blessed. And everything is complicated. I have, as the late and very great Sir Terry Pratchett said, two diseases. Two minds. The ALS mind and the Knowing I Have ALS Mind. I call them Future and Fatality. They argue constantly over everything I do, every plan I make is scrutinized by both sides, every human interaction is watched with both minds. Future is all about the practicality of the day to day, maintaining a sense of normal through all of this chaos. Fatality is about the hard reality that my time is very much abbreviated and some allowances must be made. Future is the one saying I have to work until I can’t, so as to prolong the quality of my life and finances for as long as possible. Fatality is the one saying FUCK THIS, we are DYING, who the fuck wants to work until all quality of life is gone?! Let’s spend our money making the last days AWESOME. Future says, yeah, but we still have to go to fucking work tomorrow, you moron. Disney World souvenirs don’t buy themselves.

They’re both right.

…It’s complicated.

There is definitely some sense of maintenance of the status quo that’s necessary. Continuing to work not only provides a stronger income than I’ll get on disability, but it’s feeding me a sense of normality, and there’s a great comfort in the routine. I can handle this. Yes. I’m dying. But there’s still work to be done. The floors still need swept, the cats need feeding, and while I’d like to do nothing but sleep, that’s not going to help anything. I can continue because I must, life is moving and so I, too, have to continue to move. Acknowledge that I am not dead yet.

There are definitely concessions that need to be made. Considerations to signing a 30 year mortgage that I know goddamned well I’m not going to see the end of. Allowances to make life fun while I still have the ability to participate. Plans to make so that memories are made and things don’t get left undone. Write your fucking will. Go ahead and spend some money on stupid things because I know in my heart that it doesn’t even matter. Make myself as happy as I can, while I can. Acknowledge that I am not dead yet, but WILL be.

Their key arguing lately has been about living situations. It’s amazing what will trigger me and what won’t, and unfortunately I never know until it happens. I can brace myself for things I think will be problematic, but sometimes they aren’t. Sometimes it’s the stupidest shit that trips me up. And it changes from day to day. Some days I think living with Danielle will be just fine, and some days I think I will do anything within my power to live alone until I absolutely can’t. It’s not about living with her, it’s about living with ANYONE. Some days I accept financial advice with grace, and some days it’s FUCK YOU I KNOW HOW TO SPEND MY FUCKING MONEY LIKE A MOTHERFUCKING ADULT. I HAVE GOTTEN THIS FAR, YOU KNOW. I AM NOT STUPID. Anger comes up unexpectedly, avoidance gets triggered, there are hurt feelings and tears and anger and misunderstandings, and later you sort through it all and you don’t know what happened, even after.

My main babe and I had a huge thing last week. I wouldn’t call it a fight. It was a..surprise boundary test that went very poorly. Plans kind of got put on hold, and I wound up making a rash concession that I had to withdraw and I feel fucking awful about it. Lines were drawn. Many many tears were shed and for a few days there, ativan was popped like candy to try to stave off the panic attacks that just kept coming. It cemented our need for couples counseling. It brought up a lot of good questions. It hurt a lot of feelings. I really, really can’t accept help gracefully and need to work on that. I need to draw lines and feel comfortable, as the center circle, maintaining them. Even if I’m wrong, I’m in charge of my own care. And even if I’m right, other peoples’ opinions are valid. Even if I choose to ignore them in favor of what I want. And a lot of times, I don’t know what the fuck I want.

It was complicated.

We’re still okay, of course, we love each other to pieces and that’s never going to change. It was a surprisingly brutal and hurtful exploration of caregiver/cared-for relationships and I did not like it one bit. And it’s going to continue to happen, and we’re both going to get stronger for it, and it’s going to fucking SUCK while it happens. I hate making her life hard. But I can’t help but do so. Fucking ALS.

I wound up looking for, and finding, an apartment of my own in the interim. My house closes on the 6th of July, but the housing market is extraordinarily chaotic right now, so finding another place to buy is impossible. Especially when I don’t even know what the fuck I’m LOOKING for, and things I am okay with on paper suddenly turn in to panic-inducing dealbreakers. So I am going to live in an apartment, and continue to be alone while I can, and get through life with my best babe and my awesome planets in orbit as best as we can manage. Looking for an apartment is always shitty, and right now rents are INSANE – I wound up accepting an apartment that is 2 bedroom and less than half the size of my house with 6 square feet of patio and a tiny kitchen for $50 less than my goddamned mortgage. And I’m having a really hard time with it. I sit here, typing this, looking out at my amazing back yard that will be someone else’s in a month’s time. I walk the floors I installed myself, I sleep in the room I had not even finished carving out for myself, I sign a lease with all of these rules and regulations that being a homeowner just didn’t have. And it’s hard. I’m glad I found a place and have a place to land, but losing this dream of mine is hard. I’m grateful the work is lessened, happy to have less space to maintain in my lesser state, but goddammit this was MY HOUSE. Future is happy that I’m being so practical about it and is planning the move, and Fatality is punching holes in things when she’s not crying her eyes out.

It’s complicated.

Yesterday we moved all of the extraneous stuff that had been taken down for staging, all of my books and DVDs and winter clothes and decorations and baking gear. We put it in storage. It was a really hot day and we all sweated a lot. The heat kept my mind from wondering if I’ll ever unpack some of these boxes. My ability is waning every day, and the longer I wait to find my proper space, the less power I will have to make it my own. I sacrifice my future nesting to further my independence today. And the weekend was a constant reminder of my lessening ability. My handwriting, as I filled out the lease paperwork, was atrocious. My hands are suffering and I am trying desperately not to just freak the fuck out all day, every day. My stupid feet grew wrong and I’ve got nasty bunions on both my feet, and because of the muscle loss, the bone is barely covered with a little bit of skin and it rubs and pinches and is excruciating no matter what shoes I wear – but the only real fix is surgery, and do I seriously want to give up even MORE mobility to get it corrected? Every movement costs more energy than ever before, and even though I wasn’t allowed to move boxes, I am physically DONE from this weekend. DONE DONE DONE. I am tired and sad and grateful – so fucking grateful – to my friends and brother for coming to my rescue on a miserable day. I put them all through a rough day, and they loved me enough to stay. And though I was grieving, I was grateful.

Future is kind of pissed off that I spent so much money for the lease and renting storage space, because that’s money we could be putting away, and it’s really impractical when I know I’m just going to have to give in eventually anyway. Fatality is flipping her the bird and patting my head and telling me it’s going to be alright even though we both know she’s lying. Usually I side with Future, but right now she can fuck off. I have to leave this house that I love, and it’s cruel that it’s so much work to make that happen. Fatality knows we have people who will help and just chill the fuck out and maybe play some video games tonight instead of worrying about it.

I guess this post kind of wandered all over the place. Sorry. My brain is full, I am mourning my loss of independence even as I struggle stupidly to hang on to a shred of it at great expense, I am obsessing over every detail even as I am actively avoiding thinking about any of it. And hopefully figure out the fine line between standing up for what I want and deciding my own fate, and being a goddamned idiot who needs to admit that she’s not as strong as she wants to be. To learn to accept help gratefully while still asserting control over what help I accept. Stubbornness versus weakness, and strength perceived as stubbornness versus self delusion perceived as assertion. And I usually can’t even tell which is which.

All my life, and now so more than ever, I am very, very complicated.

A is for Awareness

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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.

Assisting the Assistance

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One of the most common questions I get asked is some variant of “what can I do for you?” or “how can I help?” or “what do you need?” It’s a common response to finding out someone is in distress, when the situation is too large to process at once. It’s a natural instinct, to want to exert some kind of control over a situation that makes you powerless. Okay, it sucks that you have a terminal disease, what tiny little piece can I work at to make it suck a little less? There must be SOMETHING. Anything.

You know the absolute best thing you can do, for anyone going through A Big Deal?

Take care of their caregiver.

The Big Deal sucks for the person who is center circle, no question. But it ALSO sucks for the people around them – as Dr. Doug McClure told me, “You’ll find it’s not that YOU have been diagnosed, WE have been diagnosed.” The caregiver is responsible for keeping everything together when the diagnosed no longer can. They do everything from making/getting to doctor visits to cleaning house to coordinating visits to making sure they’re wearing clean socks. Lifting spirits and lifting patients. Finding hope and finding the damn car keys.

Dying sucks, and there’s a lot of planning and work and Massive Introspective Soul Searching ™ involved, but comparatively? My job is easy. I just gotta die. Whether I work at it or not, the end for me is the same. I just have to let it happen. Danielle, though, she has to plan and prep and care and organize and clean and all the things I can’t, from here on out. It’s a really big deal in its own right. Later on in our joyful journey of doom, if I just let things happen without working at it, I’m pretty much where I was either way. If she lets things happen without working at it? I won’t eat. She worries about keeping my house clean, making sure I’m not expending too much energy, researches places to live, and is pretty much an unpaid personal assistant.

…The woman cleaned up cat poop this weekend to spare me having to spend a spoon to do so. CAT POOP. THAT IS LOVE, PEOPLE. She’s signed on to scoop cat boxes for NOT EVEN HER CAT.

It’s a tough job but it doesn’t have to be thankless. I’ve done thankless jobs, and they’re soul-draining. I’ve done really shitty jobs happily, because I was appreciated for it. It’s amazing how far a thank you goes. An honest, sincere word of thanks. A “hey, I know this thing took up all your weekends for a month and I’m sorry I can’t pay you for it, but let me take you to lunch at least”. Taking a second out of your life to say “I appreciate the hell out of what you’re doing.”

I’ve said it before: it is fucking AMAZING how helpful it is, to simply have someone just acknowledge what you’re doing is hard.

So if you want to do something for me? Do something for Danielle. Buy her a freakin’ Jamba Juice or something. Ask her how you can help share her burden. She needs people to care for her. Someone to give her a break sometimes. And mostly? People to recognize that what she is doing is HARD. She is shifting her entire life to be there for me. People need to appreciate and acknowledge that sacrifice. I appreciate the ever loving SHIT out of her, and it will be extremely helpful to me if others do, too.

Anniversary

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There’s a book called “Miss Peregrine’s Home for Peculiar Children”, which I love, and in the epilogue, it brilliantly describes how anything that changes you forever splits your life into two halves: Before and After.

Before, like anyone else, I had a lot of plans. I just bought a house. I had all the paint, and all the decorating ideas, and SUCH a garden planned in my head. My backyard is luxurious and I had many garden barbecue parties planned already. I had a spare room just for fostering kittens. My kitchen was a thing of beauty, I was planning amazing culinary ventures. This was going to be my forever home.

Before, my health was pretty good. I still had chronic headaches, but they didn’t really interfere with life much. I had lost a bunch of weight and was fitting into 32 inch jeans again – I felt healthy and cute, and was getting confident about my body. I wore size small shirts, and bought new clothes. I had energy, I was doing things and going out.

Before, work was reaching a comfortable zone. I had confidence in my ability to rise to whatever I was asked to do, and I saw a long career ahead. I was going to school to become an engineer and get promoted.

Before, I was comfortable in being single, I was self-reliant and independent. I could do anything by myself.

Before, I never really thought of myself as particularly important or special. I had people in my life I adored, but never felt worthy of their adoration in return.

Before, I never thought about death much. I knew academically that I agreed with assisted dying, I knew that getting paperwork done way in advance was important. I knew I should have an advance directive. I knew it happened to everyone, I knew on a high level what happens and that there’s a ton of complication and high emotion when it occurs.

A year ago today, I was in the middle of the Medical Folderol and had recently discovered I couldn’t stand on my toes anymore. A year ago today, I sat in Dr. Goslin’s office and stared at her hands while she told me that I have ALS.

After, I use leg braces, knee braces, and a cane to help me walk. When I walk down the hallways at work, I usually don’t bring the cane, but walk with one hand brushing against the wall the whole time. My social worker called it “wall surfing”. Walking a block exhausts me. I carried five empty boxes up the stairs last week, setting them on the steps, walk up a couple of steps, pick up the boxes and put them a few steps higher, repeat. I was sweating and out of breath by the time I was done. Walking the mile to the bus stop is out of the question. I carpool with an awesome coworker in his big red truck, and I know there’s going to be a time soon that I can no longer physically get in his truck. I can’t manage the one step up into my house, I have to brace my hands on the doorpost and pull myself in and up.

After, every crowded room is a minefield. Who is going to knock me over? I carefully watch my entire perimeter for unexpected people, or someone in front of me stopping suddenly. Every social interaction is a potential disaster, far and above my usual social awkwardness. There’s no more casually walking around, I have to be keenly aware of movement around me so that I don’t get tripped up or knocked down.

After, everything is a matter of energy budgeting. I wake up already exhausted, and everything is so much harder. My muscles have to work overtime to compensate for the ones that suck. There’s no more “just a quick trip down to the store room” at work. I have to plan that effort. Every little thing sends me in to a sweat. It’s super sexy. There’s no more getting a wild hair and deep cleaning the bathroom. Some weeks the bathroom doesn’t get cleaned at all.

After, my weight ballooned back up. Stress eating. Bleh. But the medical professionals encourage you to gain weight and keep it, with ALS. Heavier patients tend to have better prognoses. And you need that fat, for when you’re not able to eat anymore, like a whale living off its blubber. “Don’t go crazy, you don’t want to need a bariatric chair or anything, but..be nice to yourself and eat what you want.” Cause…fuck it, I’m dying.

After, I’m working hard to sell my house that I love and fought for because it’s becoming a physical impossibility to live there.

After, I am intimately aware of the legality and the complications of death. I’ve met lawyers and social workers and it’s more complicated the further you go. There’s nothing simple about the bureaucracy of death.

After, I know damn well how I feel about assisted dying. And I intend to exercise that right, if it comes to that, and it infuriates me that it’s not an option for Alzheimer’s patients, too. And an option everywhere. Brits should not have to take a permanent vacation to Switzerland to die in a strange hotel-like room. For a lot of money.

After, I am so, so, so blown away – daily! – by how much I seem to matter to people. By the sheer quantity of people who have stepped up to do something, even something small, to make my life a little brighter, simply because it was in their power to do so. And they love me. I thought I was insignificant, someone nice to be around, but certainly not someone who mattered much, and I’ve been told and shown how wrong I was. Constantly. In surprising ways.

After, I know how much I have impacted lives around me. I know how their lives impact mine. I know how important a seemingly insignificant gesture can become, years later. How memories define you, and can change your life without you realizing it. How important it is to reach out to people, all the time, because you never know who will show back up and be a key player when drama unfolds.

After, I know my strength. I know my calm and my pragmatism were not just theoreticals in my head, they are actual and they are real, and they will help me get through this. I know I have the grace and the quiet power that can see me through everything to come, because they have seen me through this far. I know my humor and my compassion will go far and help me survive for as long as I can.

After, I know that I’m seriously a morbid bitch. My dark sense of humor prevailed, and I’m finding things funny that would have appalled me had they been about anyone else. I am in love with a web series called Ask a Mortician, fascinated by the machinations of how we deal with death. I seriously believe we have done ourselves a terrible injury by trying so hard in the last hundred years to pretend that death doesn’t exist, it’s something that happens to other people. Because sometimes, it happens to you. And we, as a society, have forgotten how to deal with that.

After, I am intimate with the kindness of strangers. It never ceases to take my breath away, and it is so life-affirming when a total stranger gives me a kind word, encouragement. When total strangers sent me money to help. When a woman I’ve never seen before or will ever see again looks me sincerely in the eyes and says words of love and strength. And means them. It’s one thing to be told, “Good luck” or “have a nice day”. It’s another to feel someone reach out with their soul and tell you that they wish you all the best, and to keep up my optimism because it will see me through.

After, a year later, I reread my blog and see myself shift in little ways, and discover opinions I never realized I had. I see myself think about hard things, make difficult decisions, and become stronger than I ever thought I’d be. And I know that I’ll be okay.

Before, I didn’t know if I would ever have had strength and support to see me through After. After, I know love and support and strength and grace I would never have discovered Before.

After, I know that by the amazing and profound love of the people in my orbit, I’m going to be fucking FANTASTIC. And I can’t wait to see what the next year shows me.

Clearing Out

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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.

Inappropriate Friends are the Best Friends, Part 3

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

me: that’s a LOT of cremation material

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

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

Danielle: hehehee there ya go

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

Danielle: I was thinking that, yes

me: maybe just sticker my corpse and call it good

Danielle: Oooo it’ll be a wake game

me: hehe see?

Danielle: that was bad

me: Pin the sticker on the Vashti!

Danielle: hehee not entirely ashamed hahahaa

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

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

Crying for the Right Reasons

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

omigodomigodomigodomigodomigodomigodomigodomigodomigodomigodomigodomigodWHHHHHHEEEEEEEEEEEEEEEEomigod

….over and over.

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

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

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

To benefit me.

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

Holy SHIT you guys. HOLY SHIT.

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

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

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

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

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

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

WUSATA card

And they wrote the sweetest message inside:

WUSATA inside

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

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

Thrown Off, and Thankful

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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.

Talking to Strangers

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

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

++++++

One:

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

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

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

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

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

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

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

Two:

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

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

“Fantastic,” I told him, “you?”

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

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

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

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

“Oh, I’m sorry,” he said.

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

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

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

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

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

++++++

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

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

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

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

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

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

Legal

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

Anyway. The lawyer.

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

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

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

(Goddammit. One fucking year. FUCK!)

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m still alive

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I’m doing science and I’m still alive!

I am still doin stuff, and I have things to tell you, but a total lack of the time to write it up. Man. Life is crazy but it’s good that I have the energy to keep up with it still. I still need to tell you about the lawyer, and other things.

This weekend, my bestest and mainest of babes is throwing a huge-ass garage sale to fund my crowdrise campaign. She’s been working incredibly hard on it and I can’t even tell you how much I love her.

I hope you guys are doing well. <3

The Walk to Defeat ALS

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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.

Asking

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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.

Okay.

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.

And so I’m asking.

Here is my fundraising site.

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.

I’m asking if you can.

Inappropriate Friends Are the Best Friends, Part 2

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We went out early so that we could have brunch before the clinic appointment; Danielle, Gecko, and I. We went to a favorite cafe in Portland, around 10:30 AM. While waiting for our order to be taken, Danielle looked around at the cafe’s other patrons.

“Wow, there’s a lot of retirees here. This is the life. Just…come on down here, and read the paper and have breakfast.” She looked over my shoulder, gesturing with her chin. “They brought crosswords. That’s adorable.”

I could easily come to love that lifestyle. Wake up later in the morning, meander down to a delicious breakfast, and enjoy a slow morning with a book. Trouble is, when I don’t have to worry about work, I won’t be able to ‘meander’ anywhere. I’ll stop working because it is impossible for me to operate a computer in order to do my job. That means I can’t feed myself either.

“When I’m retired,” she said wistfully.

I pictured Danielle and myself at the tables, me in a power chair, shooting daggers at her with my eyes while she pointedly ignored me in favor of her book. She’s threatened to do terrible things while I’m helpless. Like dress me in pink. I was going to tell her my inappropriate joke, so I started, “I’ll be disabled.”

She cut me off matter-of-factly. “You’ll be DEAD.”

…and then we disturbed all of the retirees with our howls of laughter.