On the virtues of being a data point instead of a statistic.
On the virtues of being a data point instead of a statistic.
I’m not sure it’s possible to put into words how it feels when your own body betrays you. It’s like Lemony Snicket said about the loss of a loved one: “‘If you have ever lost a loved one, then you know exactly how it feels. And if you have not, then you cannot possibly imagine it.” If you’ve had your body just stop working the way it ought, you know how it feels. And if you haven’t? You can’t possibly imagine it. I can’t properly convey the complicated feelings it invokes. But it’s not gonna stop me from trying.
I’m becoming good at it. By which I mean, I haven’t broken anything yet!
They come with no warning. There’s no preparing, there’s no prevention except possibly living in a bubble and/or strapping in to a wheelchair already/never doing anything ever. One leg or another just suddenly says NOPE and then I’m on the ground. It happened today while I was walking to the title office to sign over my house. I was walking slowly, I had my cane, I was watching for uneven sidewalks, but I was just …on the ground suddenly. There is a split second of OH SHIT I AM ABOUT TO FALL and then gravity. There’s nothing you can do about it. I scraped my knee a bit, wrenched my ankle a little because it’s a whiny bitch that can’t do its job right, and roughed up my palm, but it didn’t really hurt. I managed, in my wobbly goose ascent, to mostly land on my butt. There were no witnesses.
The WORST part was trying to get the hell back up. The cane was mostly useless, I need two hands to haul myself up anymore. I gave it a couple tries, like a newborn deer trying its legs out for the first time, but SCREW those little baby deer, man, they got FOUR legs and I only got two that don’t work. I sat/knelt on the sidewalk for a minute, surveying my surroundings, trying to figure out how I was gonna do this. To my left, shrubbery and then a little steel fence. The fence is perfect, but the shrubbery is an obstacle. To my right, freshly watered grass and a tree. I sacrificed my clean pants and opted for the slightly muddy track to the tree. Kneeling in the dirt, I planted my heels against the sidewalk and kinda pushed myself up against the tree. Once I got back to my feet, I was fine.
There wasn’t a lot of angst involved in the process. Just quick thinking and scheming and logistics. The thinking/feeling comes AFTER I’ve solved the immediate problem. And my thought process was almost entirely:
WHAT THE SHITTING FUCK, BODY?! I THOUGHT WE WERE A GODDAMNED TEAM. WHAT IS THIS RANDOMLY DROPPING MY ASS ON TO THE SIDEWALK BULLSHIT?! DO YOU WANT ICE CREAM? ARE YOU BLACKMAILING ME FOR ICE CREAM? WELL GUESS WHAT, SHITHEAD, WE GOTTA WALK TO THE STORE FOR THAT. AND THAT MEANS NOT DROPPING US ON THE SIDEWALK FOR NO FUCKING REASON.
I’m trying, I really am, my body says back. It’s just hard. Everything is so much harder than it used to be.
YEAH OKAY I GIVE YOU THAT I MEAN FUCK WE ARE SWEATING BUCKETS HERE FROM JUST WALKING TWO BLOCKS EVEN IF IT WASN’T ASININELY HOT OUT ALREADY. BUT FUCK, MAN, COULDN’T YOU HAVE DROPPED US SOMEWHERE I COULD GET UP WITHOUT GETTING OUR PANTS MUDDY?
You have as much warning as I do. I’m sorry. The last few weeks have been rough, maybe we could take it easier for a little bit?
WELL SURE I WOULD REALLY LIKE THAT, BUT WE HAVE TO DO THIS ONE THING TODAY. WE HAVE TO DO THIS AND THEN WE WILL BE DONE WITH THE HOUSE WITH THE STAIRS FOREVER.
…Ugh. Stairs. I’m so glad we’re done with those.
WORD. AND ANYWAY DIDN’T WE GET LIKE, ALLLLLL THE SLEEP ON MONDAY?
We did? But I don’t feel rested at all. You’ll have to take that up with Brain.
hey look dudes it’s been a rough coupla weeks a’ight i’m having a hard time dealing with all this at once so maybe just back off okay
WELL NO SHIT IT’S BEEN ROUGH, YOU WON’T SHUT UP. IF YOU’D JUST LET US GET THROUGH THIS STUFF MAYBE WE COULD NOT SUCK SO BAD AT LIFE AND FALL AND SHIT.
hey fuck you body you’re the problem in the first place you know if you weren’t killing us all by deciding to shut down then there would be no stress over house sales and we would not have fallen probably i’m just saying and we could stay in the zombie tramp house cause we like that place but no you can’t even get up the stairs without sweating like a little bitch
SHE HAS A POINT.
Fuck you both, alright? Can we just get to the signing so we can get on with the day?
WELL I DON’T KNOW, BODY. THAT IS KIND OF UP TO YOU.
hahah fuck you loser
OKAY LET’S DO THIS, OKAY. AND BODY, MAYBE YOU CAN STOP DUMPING US ON THE SIDEWALKS SO MUCH.
not to be a dick or anything but maybe we should get an actual walker so if this happens again we can get up off the ground easier and maybe it won’t happen so much cause we’ll be more stable and stuff
…YEAH. YOU’RE PROBABLY RIGHT. FUCK. WELL LET’S JUST GET THROUGH THIS SIGNING OKAY AND THEN WE CAN DEAL WITH THAT.
ok man whatever hey body you ready to do this shit
Yeah. Hey, sorry. I mean…I really am trying. But everything’s so much harder, you know? I’m sorry this sucks so bad. I’m trying.
YEAH. I KNOW. I’M SORRY FOR YELLING..I MEAN, I’m sorry for yelling. We’ve been dealt a shit hand and I need to be nicer to you. I’m sorry. We’ll get through this. I know you don’t mean to be unreliable. I mean, you’re what gets bruised and scraped up after all. I just get embarrassed.
and you know uh also reminded that we’re gonna die sooner than later in a pretty shitty way but maybe that’s just me cause i mean a fall is a pretty clear indicator of decline and stuff but hey
Okay yeah, that too, but that comes later. Usually. But of course now that you’ve brought it up. Fuck. Yeah. I guess I am falling more, lately. They’ve already asked if I want a chair but I ..I just don’t think I’m ready for it, I mean I thought I was getting around okay and so far nothing really bad has happened when we fell, besides freaking out bystanders.
…dick move, brain.
We hate that phrase, brain, and you know it. It makes us sound like a complete tool. You could replace ‘just saying’ with ‘I’m an asshole’ and still convey the exact same message.
Okay, you two. Fuck it. Let’s go sign away our dream house.
Ok. I’ll get us there. Just go slow.
hey though seriously you know we’re gonna be a’ight though, right cause i mean we’re doing good all things considered and we have peeps at our back and it’s gonna be okay
Yeah. I know. This sale happened quickly, for much more than we thought we’d get, we had so so many friends show up to help, and Justin did all the post work so we didn’t have to. Seriously we’re pretty goddamned lucky, all things considered. Let’s go sign some paperwork.
Can we get ice cream afterwards?
fuck yeah ice cream
Hell yes we can. Let’s do this shit.
When I was younger and cooler and far more existentially miserable, I wore soft leather boots and flowing skirts and metal belts with chains and coins and bells that made a lot of noise. Not so many as my friend Bascha – you could hear her coming a mile away. But the chains around my waist and the handcuffs through the epaulets on my jacket and the many metal bracelets around my wrists and the key earring clanging against the rest of the rings told you I was around. I loved the weight around my hips like a hug, the bright glint of the lights catching everywhere. And when I danced, I’m sure they all made a wonderful clatter. I delighted in jogging down the stairs, listening to the pinging and the rattling sounds that I made.
Hi, I’m Strange, listen to my wonderful assortment of spanglery. I don’t actually want to be noticed, so much, I don’t want to have to interact with you, but I want you to be aware that I’m here, with my jangling cacophony of industrial noise. I had my own joyous soundtrack of chains and bits and keys and bells, shaking rhythmically to my own walk. I don’t march to a different beat, I am the drummer*.
I have a new soundtrack now, a more subtle one. I have new shoes and they make a lot of noise, because they’re not broken in yet. Creak-creak-creak of the fake leather. It goes with the skrtch skrtch scrtch of the Velcro on my braces. And the soft click, click, click of the cane. And the near constant ‘ahrm’ clearing of my throat due to whatever medication is causing that. It’s not such a joyful soundtrack, but it is my noise nonetheless. A song of medicine instead of industry.
Necessity drives this noise instead of a penchant for collecting shining metal bits, and the undertone is the same. I don’t want to be gawked at but I want you to be aware that I’m here, please don’t back in to me. This isn’t music I chose, but it’s not a bad one. I’m glad it’s not accentuated by the rustling of adult diapers or the scree scree scree of dragging an IV stand around. And not the vshhh vshhh vshh of assisted breathing. Not yet.
I am not so young. Not so cool. Not nearly so miserable, despite it all, and I wonder what my younger, noisier self would have thought about that. She’d be crushed we can’t dance anymore. She’d be confused why I’m so much more content than she is, all things considered. And I’d show her the support these medical noises bring, and the emotional support the medical need has brought, and I think she’d agree I have it better of the two of us.
It isn’t stopping me from thinking about buying a chain belt, though.
*All credit for that line goes to my dear friend Linnea, who uttered that bit of brilliance as we sat in my room as malcontented freaklet teens. I don’t think she ever knew how much that phrase inspired me and cemented my complete adoration of her.
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.
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.
A few weeks ago, a few very short weeks, a friend posted something in her facebook along the lines of “our routine doctor appointment turned into a little bit more. He’s being admitted right now, but please don’t worry!”
…and I worried.
She’s like me. Bubbly, happy, all about best possible outcomes, optimism, and smiles. She’s a joy to be around. He’s a sardonic, sarcastic, clever man who used to be my boss. You know he’s awesome if he used to be the boss of me and we STILL talk. He’s snarky and hilarious. They’re both a pair of my favorite people. Still can’t believe they hooked up, much less got married, but they’re fucking perfect for each other and I’m really glad they did. I love them to pieces.
So when she, bubbly, optimistic She, didn’t SAY what had gone awry, I knew it wasn’t good. And then I was invited to a support/information group created in facebook, to keep in touch with what was happening and how we could all help. And then, scary words eventually saw the light of day. Cancer. Stage 4. Scant months to live. Maybe more if chemo works.
And just like that, their lives were over as they knew it. And just like that, the floor dropped away from all of us who knew and loved them.
I can’t even pretend to say I know what it’s like to be told you have a short and definite lifespan. I know how it was for me, how it continues to be, but I can’t even fathom what he’s going through. His time is so much shorter than mine, his notice so much more sudden. He has a wife. And while they’re publicly taking it with grace, no one knows what’s going on inside. Some aspects I can guess at; the panic of Time suddenly a companion, yelling at you about all the things you have to do before you go. The complete bafflement of, how did this happen. Is there something I could have done? But then there’s also the chemo – unlike my timeline, there’s a chance for an extended cut, but only if you can withstand it. And now they have to decide quality of life vs. quantity. And I know that mental argument very well.
There’s absolutely nothing I can do but stand by and love them, and listen, and hold space. And when they make decisions, honor them. Be there as much as they will allow me to be. And then let him go.
It’s the only thing within my power.
I wrote about her awhile ago. She was suffering from bulbar onset ALS, and she gave me the chance to figure out and to talk about how I feel about assisted suicide. And she gave me the courage to tell all of you, and start that difficult conversation. It’s a really hard thing, to tell everyone that you are probably going to take your own life and they’re going to have to forgive and be okay with it. She did it with perfect grace.
She had been fighting the Boss Fight of ALS for awhile. Her decline was fast. I only knew her through facebook posts, and it seemed like daily there was another struggle, another development. But she faced it with so much fucking GRACE, and smiles, and gratitude. Her posts weren’t about how she’d never live to see her son grow up, they were about the daily joy she found in his company and the treasure trove of memories she was building for him. Her posts weren’t about her medical suffering, they were about the gratitude for the people who helped her through it all. Look for the rainbows, she says constantly.
April 4th, she had fought enough. She left a goodbye, and a video for her son, and the last words, “Enjoy. I have.”
And then she let go. And so I, too, let her go.
I’m losing strength in my hands.
I’ve been noticing maybe a month or two now, but I’ve been in complete and total denial. The mailbox lock has ALWAYS been hard, it’s just a bit more difficult to turn the key; must have frozen or something. The lid to the cup is way more difficult to pry off because it’s new. Cutting a piece of steak cramps up my hands, but hey, it’s just cramps. I had AGES before my foot strength was lost after the cramps started, right? My hands are shaking while holding my laptop because I’m just tired. The word of the day and things that I write up on my whiteboard every day just SEEM a little shakier. But I’m sure it’s nothing. Right?
Friday, April 4th, I fell. For no reason. It was the first time that happened; I wasn’t tripping on anything or trying to maneuver, I just…fell. And wrenched my ankle. And felt very sorry for myself and frustrated. And so I told Dr. Goslin this, on Thursday during my appointment. And she confirmed I’m losing strength in my hips.
…And I said I think I might be losing strength in my hands. She did the usual tests. And proved that I am.
I was absolutely right in that this? This is a trigger. This is panic and terror and the beginning of the end. And this makes everything so much worse. My timelines have shifted, and things I thought I had some time to do, I suddenly don’t. I have to write the letters while my handwriting is still stable. I have to do all the things I can’t, soon. And I’m freaking the fuck out. Because I don’t know what else to do but scream.
She asked if I’d like to borrow a motorized wheelchair to see how it works out. And internally I flipped the fuck out because I am NOT ready for that. No way no how. But outwardly I politely declined and said I’d like to wait awhile before going down that road. She agreed that I have a lot more time of mobility left, so there’s no rush. But it’s coming. Danielle suggested one of those old-people jar opening assist things. And I panicked a little but kept it in. I said maybe a walker, but not a wheelchair. Not yet. But my hands are going to have to be accommodated for.
After the appointment we went to the store to get some meds and some air fresheners for the empty rooms in my house that I’m clearing out for sale. And I couldn’t get the fucking tops of them off. I had to use my teeth. I still have dexterity, but my strength is going. And so, too, are all of the things I thought I could do to keep the loss of mobility tolerable. For now I can still type. I can still play video games. But I thought I had so much more time before I had to think about the end of those things. To a time when I can’t use chopsticks, to when I can’t pull myself out of bed, to when I can’t dress myself.
And it scares the motherfucking SHIT out of me.
I’ll get accustomed to the changes as they come. I’ll persevere. But I feel like this is kind of when I really start to die. No mobility? Whatever, that’s okay. Seriously. It sucks, but a wheelchair isn’t that bad. This is a hardship, but not the end. When I am no longer able to draw stupid pictures, no longer able to frost a cupcake, no longer able to chat, no longer able to launch Skyrim…that is the death of me. When I am no longer able to even fucking pet my cats. That begins the days of the useless shell that I become. I wonder if I’ll want to go get the prescription the day I drop something for no reason. I won’t use it yet, but I wonder if that’s going to be the preflight check. When I will start thinking seriously about the endgame.
And I don’t know if I’ll have the strength to let go, when all I feel like doing is trying to hold on.
And I’m really, really scared.
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:
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.”
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!
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.
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.
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.
Yesterday was a bit of a tail-end meehhhhh day but today we are back to our regularly scheduled optimism. Things seem a lot more manageable today. I also have an appointment with my shrinkologist, and I intend to ask him about coping methods. Bad days don’t happen often, but when they do, I’d like more in my toolbox than “take an ativan and go to bed”. Sleep is indeed a panacea in my world, but it’s an inconvenient cure when there’s work to be done.
My main babe Danielle and I have plans to meet with the aforementioned friends for a night of talks and Cards Against Humanity. I intend to show off my “I’m Dying” cards. I have a coupon for 250 free business cards, I think I’ll print some up, wallet sized. And I can carry them around easier (though I LOVE LOVE LOVE the ones Megan sent me and have those in my purse at all times) and divvy them up to my similarly dying friend. I think he’d appreciate them.
What else. I got an awesome new cane! It’s clear plastic and hollow so you can put things inside! But it’s heavier than I thought it’d be, so filling it with things like candy or gaming dice might not be viable. Boo. And a little short. I will have to figure out how to fix that. And then I will have the nerdiest cane EVER.
OH! And I have to tell you about the pulmonologist. That’s it’s own post.
I’m having a bad day.
Some days are fine, some days are normal, and some days it all just fucking gets to me.
I found out today that a dear friend has stage 4 cancer and was given 4 – 8 weeks. Maybe 9 months with chemo. And he and his wife are wonderful, amazing people and they don’t deserve this at all and just, just..
And I offered what assistance I can offer, what I’ve learned about the bureaucracy of dying, and just..fuck, man. It’s been weird and wonderful to watch the sudden outpouring of love on them, see the support network spring up ‘out of nowhere’ that I knew was there all along because I’m on the outside of this. Aching because I know the inside and it’s super shitty and they don’t deserve this. Angry, so fucking ANGRY that this is happening and I am powerless to stop it. And I know that panic, and that scramble, and that wait wait wait while you know time is ticking. I didn’t deserve this. They definitely do not deserve this.
No one does. No one ever deserves to be told they’ll be dead in a year. Or soon. The roadmap to life is complicated and strange, and it’s unexpectedly horrifying to see the end of that journey, and count the mile markers on that road. And sometimes you ride in the car and the scenery is pretty and you space out and things are okay. And sometimes, like today, there are potholes and horrific accidents and you just want to pull the fuck over and breathe for a minute, but you can’t. The car keeps driving. Time keeps ticking.
And so sometimes, like today, you lock yourself in the bathroom at work and cry for a little bit. About your friends, but about you, too. About everything. And then on the way home, you buy all of the junk food and sit in front of your computer and eat everything bad for you and play Skyrim and try to tune it out for awhile. Tomorrow will be better. But today is a bad day.
I think bad days are an evil gift, because they give you permission to fall apart for a while. It’s like a valve release, or some days like a punctured balloon. Permission, a reason, an excuse to just completely lose your shit and release all of the FUCK THIS SHIT IT SUCKS SO BAD FUCK EVERYTHING WHY THE FUCK IS IT HAPPENING THIS IS SO FUCKING UNFAIR and embrace the grief and face it down and acknowledge it, and then put your big girl panties back on and live your life. Tomorrow. Until the next time. And the bad days are cathartic and good, and yeah. Necessary, maybe. But it sucks to be having one, feeling like you’re in a nightmare and it’s going to get so much worse. Knowing I’ll feel better tomorrow does not help me tonight, as I eat birthday cake Oreos and cry in my now-practically empty office in a house I don’t get to stay in while my digital persona steals from random barrels and kills skeevers and dragons. Pretending that the world can stop for a bit, committing yourself to losing a night to escapism because it was a bad day. As though it somehow makes up for it when all it does is cost me more precious time.
Just..bad day. Tomorrow will resume my usual dealing-with-grace and optimism and humor. But tonight it all just sucks so much ass. And while it’s okay, normal, expected to have days like this, it feels unnatural and awful and I don’t like BEING sad and angry and pessimistic. It’s not me. I hate this. I hate being emo, I hate that people I love are going through trauma, I hate that I don’t always have the strength and grace to smile. I hate that I can’t always find humor in the dark. Especially when it’s darkness around people I love. I hate this.
I hate bad days.
Terry Pratchett died yesterday. He was 66 and suffering from early onset Alzheimer’s disease. He was a brilliant mind, and the world is so much poorer for his absence.
In 2011, three years after his diagnosis, he made a film called Choosing to Die. He met with an extremely British man, Peter Smedley, who had motor neurone disease – known here in the States as ALS. Peter was about the same stage as I am when he chose to die, weakness in his legs that made it difficult to walk and get up out of chairs. He had a very bright mind, and saw clearly the end of his path. He didn’t want his story to end that way, so he went to Switzerland and wrote his own exit. His wife was immaculate and also extremely British and very “keep calm and carry on”. They both kept a very strong face through it all.
I did not expect to actually see the man die.
I am glad they filmed it. It was a very good and honest look at the mechanics of the assisted death. And even though it was hard to watch, I am grateful that he shared his story. It was surreal to see someone at the same stage as I, with the same mindset, take the steps. Earlier than I would ever have. So much earlier. But he knew where he was going and did not want that undignified end, and so he took the poison and his wife stroked his hand and he fell asleep and died.
And he had to go to Switzerland to do it.
I am so, so grateful, again, to live in a state where it’s legal. How anyone can deny someone the right to die comfortably in their own homes on their own terms is quite beyond me.
It is, indeed, a beastly, undignified business.
Every city is a person. San Francisco, for example, is a cooler-than-you power player by day, club kid by night with a serious drug problem and crushingly low self esteem. He’s beautiful, but the kind of beautiful you regret finding in your bed in the morning when his makeup’s come off and you see what he really looks like. Sacramento is his younger sister who wants to be as cool as her older brother and tags along to his parties, but she really just doesn’t get it, and won’t, ever. She’s self important and destined to be either a politician or homeless, depending on whether she’s willing to sell out or not. Portland simultaneously hates himself and thinks he’s better than everyone else, writing mostly bad but occasionally amazing poetry, while drinking whisky flights and watching the rain mist over the concrete outside his rent-controlled studio apartment downtown. He’s beautiful, quirky, and surprisingly athletic, which is amazing considering you’re pretty sure he lives mostly on coffee.
New Orleans is a man who laughs too fast and too hard, talks too much and too long, drinks to work up the nerve to socialize and then keeps drinking until he’s sick, the sort of drunk who can turn on you without warning. He’s a fantastic pal to hang around the town with because he knows everyone and doesn’t mind introducing you, an amazing cook able to whip up the most amazing meals faster than you can blink, and overall will show you a damned good time as long as you’re buying. He’s got a timeless sort of tired beauty, the grace of a man who’s been through some really rough times, and the charm of a desperate charlatan in need of some quick cash. He spends way more than he earns in an effort to make himself seem far less tired and sad than he feels, and he dates twin sisters Life and Death. When Life has partied herself out and goes home in the morning, Death visits by day and they stroll among graveyards and quietly share memories of happier times.
He needs the love of both women to be allowed to be who he is.
New Orleans is a larger than life, boisterous, beautiful place. In some places, the beauty is plastic and painted on, but there nonetheless. In other places, it’s quiet and stately and dignified; beautiful if you notice it or not. Everywhere you look, death and life are married and inseparable. Among the touristy, horrible glitz of Bourbon Street, there’s a smell of sick and decay and deteriorating sidewalk rubble to trip you up at every turn. Among the quiet graveyards around City Park, plants grow between the cracks of the crypts, the living wander freely, and the whispering of traffic is never far off.
New Orleans remembers what it’s like to have a healthy relationship with death.
We visited a very beautiful paper and pen boutique in the French Quarter, called originally enough – Papier Plume – and spent a fair bit of time looking at the most elegant instruments for committing ink to paper. Beautiful glass fountain pens, calligraphy pens, ink of every shade, and journals of artisan paper for keeping track of your life in. Everything you need to spill your living thoughts on to dead trees. As a sort of team memento thing, we all three bought glass fountain pens. We spent more time deliberating on ink than we’d spent choosing the pens, and I’m grateful and surprised that the shopkeeps never got the least bit impatient with us. I found shades I loved, but was dismayed that they weren’t permanent ink – they would fade in light or run when wet. The shopwoman asked why I was so set on permanent ink.
Colin looked back at me for a moment unsure of how I wanted to proceed. I smiled gently. “I ..have a terminal disease,” I explained, “and I mean to use these to write my farewell letters.”
She was quick to recover, immediately understanding and warm. She expressed her condolences, particularly when I mentioned ALS specifically, as – with so many people I’m finding – someone she knew had been lost to it. We made our selections, and she sincerely wished me luck. I appreciated it, and told her so. New Orleans was such a wonderful melt of life and death, that it wasn’t awkward to have that conversation. I only mentally dwelled on it at all in order to marvel at how normal that exchange seemed, before putting it away in my memories.
Several times I felt like I ought to have been somehow overwhelmed by it all, achingly sad to know that it’s the last time I’ll be in that city, thinking on life, death, the afterlife while sitting in St. Louis Cathedral, waiting to be moved enough to weep, and never really feeling like I needed to do so. I felt very comfortable and at peace there. I did not need to mousecreep my way through social interactions, because death was a part of life there. No explanations, no apologies needed, just a warm bath of understanding at the very core of the city. Time enough to relax and revel in a healthy attitude towards death before returning to a world still terrified of it.
I could never live in New Orleans, but it was delightful to be in his company for awhile. I’m grateful for the chance I was provided. Seven days being allowed to be what I needed to be, with two amazing people who love me to the ends of the earth and with whom I feel safe enough to relax my constant need to assure everyone I’m okay, and admit when I’m overwhelmed and need to sit down a bit. Seven days to live and eat and breathe and sleep for a week in a city that made me feel welcome and …normal.. enough to drop my guard in public for a little bit and just be unapologetically weak and flawed and alive.
A chance to be a dying woman in a city perfectly okay with death.
I promise this isn’t really TMI, but I’m gonna talk about the politics of bathroom stalls. And a personality defect of mine, it turns out.
I’m getting weaker; even if DocGos says she doesn’t notice any difference. When we first met, I used to be able to walk up the stairs with two hands full. Now I can’t; I have to have one hand free for the rail, and on no-spoon days I need both. When we first met, I could stand up on my own from sitting in a chair. I really can’t anymore.
Which means I need the handicapped stall now – I need the bars. Well, it’s like the cane – I could probably manage without? For awhile longer? But it’s so much easier with, and why make my life harder just to prove to myself that I can, that I’m still an independent woman who don’t need no man. erm. Bars. Yes. Bars. That’s what I was talking about.
And because I need the bars, I am trying really really hard to not be bitchy about it when someone who clearly does NOT need that stall is in it.
Okay – confession. I have *always* gotten a bit internally bitchy about people using the stalls when they don’t need to. It’s a serious character flaw of mine – I get bent out of shape when people don’t follow The Rules. I get irritated when someone cuts someone else off in traffic. Even if the person cut-off doesn’t even notice. I get irritated when people cut in line, even if I’m not in that line. I get mad when people at work leave their dishes in the bathroom when the stinkin’ break room is LITERALLY ten feet away. I get SO MAD when people don’t break down their fucking cardboard boxes and just leave them in the hallway. It’s because I tend to get really mad on behalf of other people, whether they even realize they’ve been wronged or not. By cutting that guy off, by sneaking in line, by not taking your dishes in, by not breaking down your cardboard and putting it in the recycle area, you are making someone else’s life more difficult because you are a selfish ASSHOLE. Even if it’s just a minor inconvenience, there was still no need for that inconvenience to exist, you just created it because you are a LAZY SELFISH DICK. And so I get mad. Because you are not following The Rules.
ANYWAY. At work, we have a huge wheelchair stall, and the normal sized one next to it has bars, so it’s awesome and I use that one, because I don’t need the space, just the help up. But consistently – CONSISTENTLY – the wheelchair stall is taken up. By tiny, tiny women. Like, a regular stall would feel large to them, WHY do they need the extra extra space? It’s always been a phenomenon that made me scratch my head, but there’s actually been a couple of times that it’s made me wait. And I try not to get irritated, but seriously.
YOU ARE FIVE FEET TALL AND 80 POUNDS SOAKING WET WHY DO YOU NEED A TEN SQUARE FOOT BATHROOM STALL.
Answer: YOU DON’T.
So when I go in there, and both stalls are taken, I have a choice between using one of the other ones, and then using the freakin’ toilet paper dispenser to pull myself up and hope to GOD it doesn’t come off the wall, or wait. And if I don’t have my cane with me at the moment, then they look at me weird for waiting. But if I DO have my cane, sometimes they have the good grace to look abashed. Usually not – they’re oblivious, because people at my work are very self-involved. See: previous posts about trying to not get knocked the fuck over in the cafe and halls because they’re not paying attention.
I wonder if, when I’m in a chair, I’ll be any more irritated. Maybe I’ll do the passive aggressive thing and put a note on the door: “THERE IS SOMEONE IN THIS BUILDING WHO ACTUALLY NEEDS THIS STALL – DO YOU?!”
In Comic Sans, natch.
Realistically, I probably won’t. I’m really good at ignoring those breaking The Rules when it’s me getting shafted. Though, I did get really irritated this weekend about it – I went to Bingo at an American Legion lodge (looong story) and wound up waiting for ten minutes for the one handicapped stall. The other two were simply too wide, I wouldn’t have been able to brace myself on the walls to stand, they were just too far apart. There was a line, and I as time went by I started to say kinda loudly every time someone asked if I was in line, “Go ahead, I have to wait for the handicapped stall, I need the bars.”
Man, I dunno WHAT she was doing in there. She took her shoes off at one point. I thought she was changing her clothes, but she came out with nothing but herself. And flushed a HOJILLION times and used up most of the toilet paper. I just…man. Yeah. She was old, there’s all kinds of stuff happening there that I don’t even know. Probably best that I don’t know. I just know I had to wait ten minutes to pee and she totally could have used the other stalls.
This is all the beginning of the inconvenience, the social stage of decline, and it will be really interesting to see how I adapt to it when it gets worse. Maybe I really WILL become the Bathroom Stall Avenger. Maybe I’ll just pull an Elsa and let it go. It will be telling, either way. Just as I’m discovering the true character of those around me, I’m discovering what I’m made of, too. I have kindness and patience I didn’t know I possessed, and intolerances I didn’t know I had in me.
I’m building my character even as my body unbuilds itself.
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.
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.”
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.
I saw Zoë Keating in concert last night. She’s an amazing musician who makes sublime music with a cello and some looping software.
Do me a favor. In another tab, open this link. Listen to it as you read this. The piece you are hopefully listening to is called Escape Artist. It’s my favorite. I love the places it takes me, the way I feel, and the calm it brings.
My other favorite is a piece called Optimist, and it’s always been One Of Those Songs. You know. You hear it and it hits you and it’s like, “FUCK, man, this is my song. This is me. This is everything I’ve been trying to SAY.” And while Escape Artist is my favorite because of the emotional and mental places it takes me, Optimist was My Song. It was an embodiment of what I am to my core, the thing I’ve always wanted to be, who and what I am when I take off the mask. My philosophy, my purpose, my soul, conveyed in cello and software. Artistry and technology.
Optimism has been high this week, but it’s been put through the paces. It’s been a week of The ALS Show. The whole weekend was about the Walk, which gave me a boost of love and support. At the end, though, the whole day was a reminder of my disease, and a display of it’s various stages, a glimpse into my future with it. Monday my carpool was traveling so I walked to the bus and I was tired from it all day. Tuesday I had all kinds of job stress because I’ve turned into our purchasing/finance person and it was the end of the quarter. Wednesday I had the appointment with Dr. Goslin. Thursday I had a meeting with the Elder Care attorney and faced a lot of important but terrible decisions. And then a meeting with my amazing realtor and talked frankly about the practicalities of buying a house when I know I’m not going to stay there forever because eventually I am GOING to have to live in a nursing facility until the end. Friday, work was harsh, there was physical labor and stressy conversations, and then the concert. Finally. The concert.
I sat in a dark room, with strangers, listening to my soul resonating. And out of nowhere, I had the thought:
This is what I want to hear as I die.
It just came as a true statement, and I could clearly imagine this sublime music playing as I slipped away, and everything would be calm and perfect. I started crying, and it was a comforting, profound moment of perfect acceptance. I am going to die. And it is still going to be okay. I cried as I sat in the theater and listened to her pouring her heart out through her cello, and I knew for a fact that it was going to be alright. No one noticed that I was crying, it was just the music and I, and it was perfect and calm and connected. With astounding clarity, the universe reached out and touched my shoulder through her music, and whispered to me of comfort and love and understanding.
I keep this blog, and it helps me put order to chaos. I have a job, and it keeps me grounded. I have a fantastic, amazing support group, and they give me strength and hope to survive every day. I have music to keep me sane.
I am, at my heart, an optimist. I’m going to be okay. Somehow. Even if I die, that will be okay, too. It’s going to work out, and on days like this, in moments like this, I am in perfect peace and acceptance.
And now you should listen to Optimist. It would be a perfect end, for this to be the last thing I ever hear. And so I leave it here for you, with love and acceptance and faith that it really IS going to be okay.
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?”
And that’s how it started. I put up a poster outside my cube, I wore the red wristband, I talked openly and honestly about the diagnosis when I was asked, but I felt really weird about asking my friends to come over in support of me. I caved and asked my friends to help me name the team at least. We had a lot of really good suggestions, but in the end, The Godzilla Squad won out. On the 16th, I posted my team link.
On the 17th of August – the next DAY, for those of you playing at home – I was at 17 members and over $1000 raised.
To say I was overwhelmed is a gross understatement. So, fun fact! I’d never cried for joy before. I always thought it would be kind of cool if something like that happened to me, but I am not sentimental in the right ways, I guess, so it never happened. Until then.
The Ice Bucket Challenge gained serious momentum, and so did my team. On the 26th, I was at $3k and 26 people. A dear friend of mine in Sacramento also started a team in my name, Team Dinsdale. We met online waaaaaaaaaayyyyyyyy back in the day, before the Internet was a thing, when you had to dial directly in to someone’s computer and leave messages on a digital bulletin board. In the BBS days, my first handle was Dinsdale.
Life continued its usual frantic pace, there was a lot happening, and before I knew it, it was the final weekend. I had four people staying at my house to attend, and one flew in from Sacramento to be here for me. I was spoiled absolutely ROTTEN that weekend, with homemade Ethiopian food of amazingness, fancyface ice cream and donuts for dessert, and the best company a girl could ever ask for.
And then, Walk Day. This is my team:
Amazing people, every one.
We gathered in a spot that was strategic and awesome until the live band started playing. Right. Bloody. There. But we were VERY easily distinguishable in the crowd with the hoodies (OMG SO AMAZING LEENDAH I LOVE YOU) and Danielle, my main babe, had printed out the kitten-vs-Godzilla picture I’d been using for my Walk page, and attached them to an umbrella. And Matt. Oh my golly Matt. He had commissioned a mighty cape of DOOM and a head cover for his staff:
IS THAT NOT AWESOME.
Yes of course it is, don’t even bother answering.
There were a LOT of people there. Oh my god so many. I’m really glad I had my team around me so I was constantly distracted by OH MY GOD HI I HAVEN’T SEEN YOU IN FOREVER instead of ..holy crap I am in the biggest of big crowds and this sucks. We borrowed wheelchairs,Danielle and I, because I can walk a mile, but it sucks, and I think three is out of the question. Danielle had to borrow one because her foot is borked and it hurts her a lot to be on her feet at ALL and walking three miles is similarly out of the question.
It was a FANTASTIC walk. Well. Roll. I got pushed. The chair was surprisingly easy to wheel myself around in, but I had a lot of people willing to help me out. There’d been cold and rain suddenly, but it cleared up in time to be LOVELY for the walk day. Even a little too warm to wear the hoodies all day, for they were made of fleece and are SO COMFY AND WARM but maybe not the best when standing for a while in direct sunlight. Megan was the smart one, she held the umbrella. Some surprise faces showed up – I didn’t expect my older brother there, he told me he had to work but then didn’t have to! – and met a couple new friend-of-friend faces and did not at ALL have time to introduce everybody to everybody. We walked a really pleasant stroll along the waterfront, and groups connected and drifted as we walked.
We finished, exultant, and some of us stayed for a picnic, and some of us had to get back on the road.
I am so. so. so incredibly grateful. I am grateful to everyone who came. Everyone who couldn’t come but donated. Everyone who couldn’t come OR donate, but thought about me.
In the end, my team was 49 members strong, more than 35 of whom showed up to walk, and $5460 raised.
I’ve always strived to be the kind of person someone would care deeply about, and like having around. I …I guess I managed that, if the support and love I’ve been shown is ANY kind of indicator.
I love you all. You’re amazing and the world is lucky to have you in it.
I was introduced this week to a comic called Spinnerette. You can read it here. It’s a pretty fun send-up of superhero comics and usually pretty goofy – a fun romp of a comic. I’m not finished with the archives yet, so I can’t give you a complete opinion, but it’s well drawn and occasionally funny.
The reason it was recommended to me, though, is that one of the main characters has ALS. She built a robot suit so that she can use what time she has left to fight crime, Iron Man style. I halfway expected to be vaguely insulted by how they treated the disease, but she’s actually pretty matter-of-fact about it, and the reactions of people around her are pretty faithful. She’s not her disease, that’s not the point of her character. It’s her motivation, but not her reason to exist. I like that a lot.
Similarly pretty accurate is the reaction when she tells the plucky heroine that ALS is degenerative, and she only has a few years to live.
And you can just..feel her frustration. The main character is more sensitive about this woman’s ethnicity than she is about her disease.
This is exactly how not to react when someone tells you they have ALS. Or any other disease for that matter. Please don’t do this. It is REALLY REALLY frustrating. You think you’re being all chipper and optimistic, but you’re really just sticking your fingers in your ears and going LA LA LA LA LA. You’re in denial and it’s really hard to be around you. You’re telling us that we can’t be honest with you when we’re having a bad time. You are obligating me to put a happy face on my hurt for your comfort, and fuck you for that.
ALS isn’t all shit, all the time, but sometimes it really is awful and we should be allowed to be up front about it. Allow us to break the news that YES, this is FATAL. And then let us be okay with that, and help you come to accept it, too. And when you accept how horrible it is, you can truly appreciate how marvelous the rest of it is, most of the time.
…Now where’s MY mech suit, dammit.
It seems like every time I post/say/THINK anything remotely depressed-sounding, I am blasted to smithereens by very well-meaning people giving me encouragement and light. Like, I have to be cheered up at all costs. But I don’t need it,usually. And when I do need it, I will say so. Lest you guys get some idea of me drowning in my own misery as I die slowly, let me explain something.
Most days, I’m good. Great, even. Most days I don’t even THINK about my disease, I don’t think about the ugly implications of my staggered walk. And when I think of the future on those days, it’s not a bad place to be. I’m a naturally upbeat person, and it’s easy to be in good cheer. I take the greatest of pleasures in the stupidest things, and that keeps me going. Life is good, everything’s great.
Some days, I am aware of my illness. Maybe it’s particularly hard to walk that day. Maybe I’m suffering from an overdraft of spoons from the day before. Maybe I have a doctor appointment that day. For whatever reason, I am aware of my disease and the limitations it puts on me. But on those days, even when I am aware of this disease cutting my life short as I breathe, I’m still good. My disease is present but it’s not really a problem. I have a realistic idea of what’s coming, but I have security in the knowledge that I have the best team in the world at my back. I can handle this. I can handle everything. Life is okay. Everything’s good.
Every now and again, there’s a moment of panic. It’s usually on the tail end of circumstances conspiring against me, for whatever reasons. My defenses are low. I am a bit “squishy”, as I call it. Just ..sensitive and prone to cry and things seem a little dark, maybe. And then there’s that moment it turns, and everything collapses in on itself and I am crushed under the weight of it all. These days are very rare. But they are inevitable. I’ve got a terminal fucking disease. If I didn’t sink under the weight of how badly I’m being fucked over occasionally, it’s likely I’m just in denial.
Things have been conspiring. I lost my 19 year old cat and just turned in his unused pain medication to my vet, so that someone else who can’t afford it can give their pet some pain relief. I’ve been GO GO GO the last few days and I’m exhausted. There was a screwup with the post office which made them think my house was vacant and that really, really fucked with me because it was a reminder that I don’t get to stay here. The motherfucking shingles. NOTHING seems good when you’re in pain. I’m kind of freaking out about money; I’m about a grand in to my credit card, with a $3k property tax bill going to come due at the end of the year and then January resets my $2k deductible and I’m supposed to go to Europe and I’ve got nothing to spend and…yeah. I feel like I’m financially drowning.
And then this video was shown to me this morning:
It’s…really fucking powerful. Stay past the bikini babe. It’s worth your time. And it left me really raw. And I talked to my brother about putting in a hand rail because I’m beginning to need both hands to haul myself up the stairs, and it hurt. I thought about having to throw all of my things in boxes and maybe not having the strength to unpack them by the time I bought a new place and I panicked.
Tonight I’m tired. And in pain. And lonely. And afraid. And worried. And weak. And angry. And depressed. And really fucking unsure where it all goes from here. And tonight I know there’s not a goddamned thing I can do about any of it.
Tomorrow I will be fine, but I am having a bad night.
And nothing will fix this. No amount of being told it’s going to be alright will MAKE it alright. And nothing will help except to let myself cry.
And so I lock myself away from the world, and I cry.
“…Put a sock in it!”
I’ve been pretty damned whiny the last couple of days because I’ve developed shingles. Which, if you’ve never heard of it, is FUCKING AWFUL. It sounds all happy! SHINGLES! YAY! There’s probably confetti involved! But it’s basically a really horrible version of chicken pox, which can happen to anyone who’s had it; the virus lives on in your body and randomly it may decide to reactivate. Only instead of the red itchy bumps all over, it’s a really angry, blistery rash and searing pain in half my body, fever, nausea, and muscle aches. It’s like the worst sunburn you’ve ever had and the flu at the same time. I am the queen of high pain tolerance – I’ve had dry socket and never even winced when the dentist packed it with that nasty gasoline and cloves shit – and this has had me whimpering and writhing. I had oxycodone left over from the muscle biopsy; I took one last night just so I could get some fucking sleep.
It really fucking sucks. And I’ve NOT been shy about saying so. Because I am goddamned miserable. And while it happens completely at random, one of the things that MAY trigger it, is stress.
Okay, so ALS causes stress. But the actual disease has been the LEAST of my worries the last couple of weeks. I had to put down my cat, Midori, after living with him for 19 years. HALF OF MY LIFE. It was emotionally devastating. I adopted a new kitten, which is a happy stress, but a stress nonetheless. I gave a talk in public which triggered all KINDS of nervous stress. I attended a party full of strangers. There WAS my first Clinic session, too, and the resulting “…goddamnit” of beign assigned a cane and a breathing exercise, but seriously? ALS is the least of my concerns right now. Real life is happening.
And so today, when I posted a tongue-in-cheek: “I’ve figured it out. I have shingles because I’ve been telling people how lucky I am that ALS doesn’t hurt! hahahahhahaawww sad trombone” I didn’t really think a whole lot about it. I had just been enthusing Tuesday afternoon after the ALS talk I gave that it was AMAZING that nothing hurts and how lucky I am. The timing struck me as funny, was all.
But then I was told that I need to cheer up. If I just keep a good mental attitude, I might be able to beat ALS. Just..buck up! ALS won’t kill me if I just think happy thoughts and don’t let it!
Okay. this is important, so I’m putting it on its own line. In bold.
Positive thinking has never accomplished a documented medical result.
NEVER NEVER NEVER. It is not going to cure depression, it is not going to cure a broken leg, it is not going to fucking cure ALS. And I DO have a positive outlook, and I really DO believe things are good and somehow everything is going to be okay, somehow. ALS is not my life. I am not All Disease, All the Time. That’s just not how I work. But having a sunny disposition is NOT going to cure me. I am dying because my motor neurons are burning out. No amount of laughing is going to keep me breathing. No amount of happy thoughts are going to allow me to continue to put my face in a smile shape when my facial muscles stop working.
A positive attitude dictates HOW I have the disease. It does not dictate IF I have the disease.
A cheerful disposition means I don’t lose friends by bringing up ALS and how I’m going to DIE in every conversation and make myself miserable to be around. It means I continue going to work and don’t wallow in self pity while I cease to be able to afford my mortgage because disability is a fraction of my usual pay. It means I keep going as usual. I continue to live my life, as normal, and don’t become a burden to be around, even to myself. It means not every waking moment is filled with terror and “JFC I AM GOING TO DIE WHAT IS THE POINT OF ANY OF THIS SHIT”. It means when someone invites me to visit them in a years’ time, I say “that sounds lovely!” instead of “I don’t think I can, I’ll probably be in a wheelchair by then.” It means “I’ll try” instead of “I can’t.”
And the occasional whining is to be expected. There are aspects of ALS that fucking SUCK. That whole…”you’re gonna die sooner than you thought” is pretty shitty. No longer being able to dance, sucks. Having to take five minutes to haul your laundry up the stairs sucks. Realizing that you forgot something downstairs and having to think long and hard about whether it’s worth the effort to go back, sucks. A stress-induced searingly painful fevery rash of DOOM sucks ass.
And I am fucking allowed to complain about these things. CENTER CIRCLE, BITCHES.
It does not mean that there’s nothing more to my life. The new kitten does NOT suck (except when she jumps up on the bathroom counter and knocks over a glass that shatters allllll the fuck over my bathroom floor). The fact that I am still able to work does not suck. Birthday cake Oreo cookies do not suck. Friends who are willing to help me get wherever I need to go do not suck. The good far, far, far, FAR outweighs the bad. All the time. And always will.
But knowing this, and having a fantastic attitude towards life, the universe, and everything, is not going to save me from an early death. And that’s OKAY. I’m alright with that. It doesn’t mean there’s no point to having a good mentality, it just means it’s not a cure. You *can’t* cure this disease. All you can do is treat the symptoms. And a good goddamned attitude is an amazing restorative.
In the meantime, you’re essentially telling me to just put a superficial happy face on a horrible and serious fucking situation, and that’s selfish. All you’re really telling me is that I can’t turn to you when I’m in a low spot. You’re making me resent you because you’re negating my frustration. You’re telling me I’m not allowed to be unhappy.
You’re telling me that it’s *my own fault* I’m dying because I’m just not happy enough.
And that is COMPLETE FUCKING BULLSHIT.
I have committed and embraced the Walk to Defeat ALS in Portland. This is a thing. It’s happening. As my team is called The Godzilla Squad, it was suggested (jokingly) that we could all get these:
I thought that was basically the best thing ever. I said I TOTALLY needed that. Though, that thing is like $75 and I didn’t really mean that; hahahah how would I justify affording that, no matter how awesome it was? Someone suggested that we make them our team costume, which I agreed would be awesome and hilarious. And then my darling friend Leendah said, “How many do you need and when?”
…I had almost forgotten that Leendah is a kickass costume designer in real life.
Long story short, she is making dinosaur hoods and hoodie sweatshirts for my team at cost.
And the amazing kept happening. People I have not seen in literally a dozen years have signed up to walk with me. My friend Marina not only donated to the walk, but offered to sponsor two people walking with me who wanted hoodies but couldn’t afford the $50. My team is already 8 people strong and has raised $450. That’s….amazing. Seriously, seriously amazing.
There are going to be two talks here at Intel, to recruit for the walk and to just flat out solicit donations, and I’ve agreed to speak at both of them. I am apparently the only person with the disease (that the ALS Association knows about) who currently works at Intel. It’s one thing to say “please give us support in the name of this guy who used to work here and has died”, but it’s another to say “Hi. I work with you guys. You might have seen me in the halls, even, I’m kinda stand-outy. I have this disease, it sucks, please give us a hand.” I’m hardly a Fundraising Warrior or anything, and I’ll never be a marketer even for this – I’m not built for it at all. But if my voice can help out, then I’ll use it towards this goal, while I can.
Tomorrow, for our team staff meeting, I asked my manager for permission to tell the team about it and see if any more of them wanted to join me. I’m not really asking for money, and it won’t cost Intel anything, so he said okay. I’m nervous about it – I’m not good at asking people for something, as I’ve said, but I also realize that for a fair few of them, it will probably be the first time they’ve heard about my disease. And that I have it.
So THAT will be interesting. I am hoping it’s a positive experience with a minimum of awkward.
This is not at all how I imagined my life would turn out to be. But I have to say, I’m not entirely discontent. Some fucking AMAZING people have come out of the woodwork, and my disease has given me some unique opportunities and put people in my orbit that wouldn’t have been there otherwise. I’m really very grateful.
As usual, babies, I’ll tell you how it went, tomorrow.