Vanitas Veritas

Long before I was bestowed with the cosmic middle finger that is ALS, I was gifted with a genetic grab bag of fuckery called ectodermal dysplasia. (There’s GOT to be a cousin-marriage something or other back in my genealogy, because COME THE FUCK ON. My DNA is FUCKED. ) Anyway. I promise this is related to ALS, but I need to give you a bit of backstory.

Ectodermal Dysplasia, for those of you that can’t be bothered to google that shit, is a family of genetic disorders that causes defects in the hair, nails, sweat glands, and teeth. I have a VERY VERY mild case. Some people with these disorders are born with no sweat glands and have to wear cooling vests their whole lives, or have webbed fingers and toes, or no hair at all. I can sweat, I have some if not all of my teeth, I have hair at ALL, I’m ahead of the game. I am very fortunate that I was affected as little as I am.

But growing up with it as a kid?


My hair grew in transparent blonde and sparse, and only ever to about 2 inches long. Except on the sides of my head, that grew up to four in wispy little threads that flew away from my skull like feathery peachfuzz wings. When it got wet, it disappeared. My eyebrows were transparent blond, visible only when I got really angry and redfaced, so they stood out white on my face. My teeth grew in all kinds of crooked and brittle and some never grew in at all. My nails are these paper-thin shreds of nubbins. I was a very weird looking kid.

Fuck, man, you know how kids are little shitheads. I had the nickname Bald Eagle in my neighborhood. The older kids would see me coming and yell, “THE EAGLE HAS LANDED!” and run away. When I was in fourth grade, one of my girl classmates confided to me that one of the boys (that I happened to have a crush on) thought I *could* be cute – if I would just do SOMETHING to my hair, because it looked weird. I had a crooked, gappy smile that I hid behind my hand when I laughed. I had an expressionless face, because my eyebrows were THERE, they were just transparent. Even the adults joined in, unwittingly, mistaking me for a boy until puberty offered evidence to the contrary. I went to a flea market once, when I was about 8 or 9, and I was looking at this vendor’s pretty little necklaces and things, and the shopkeeper came over smiling, “Looking for something for your girlfriend, hmmm?” I was too embarrassed to correct him. When visiting my great grandmother, making the obligatory visit to her next door neighbor Mrs. Day (who always had Grandma Candy) I smiled and thanked her when she told me I was growing up to be such a big boy.

As you could imagine, I had a little bit of a gender issue growing up. It didn’t help that I have NEVER been good at “girl”; I really WANTED to be feminine and cute, but I felt like I was putting on an awkward costume that didn’t fit any time I tried. I was a social weirdo and never learned makeup or dressing girly, I felt awkward and weird, this androgynous thing that didn’t fit in anywhere. I was already Strange, my brain full of ideas that didn’t occur to most, a very intelligent and bored kid, standing out because I was a loner and never felt like I belonged to any of the little school cliques, not even the nerds. I was the weird kid in the back, and weird looking to boot. No seriously. Here’s me at 14, never having had a haircut in my life:


My self confidence and ego never really had a chance.

Eventually I taught myself to embrace that weirdness and make it seem intentional – I dyed my hair strangely and scowled at everyone so they’d think that I MEANT to look that way. Androgyny was cool if you were a punk, man. Or something. I learned to hide it by being angry. I wore that anger as a shield, protecting the hurt and lonely little girl inside. The Bald Eagle is still a fucking RAPTOR man, and it will GOUGE YOUR EYES OUT AND FEAST ON YOUR LIVER. (Oh, poor, 16 year old me; I wish we could chat. How desperately you needed a hug.) But the anger just made me look weirder. My defiant, thrust out jaw just made my face square. My heavy lined eyes just made my invisible eyebrows more obvious. And I never smiled so no one would see my crooked teeth. And weird hair looks weird even if you try to make it look like you meant it.

Vasthi at 16

It took me a lot of years to work through that anger, slowly discovering and adding weapons to my arsenal in my Battle to Defeat Ectodermal Dysplaysia. Eventually I learned to draw on eyebrows to fix my expressionless face. To use false nails to hide and protect my little paperthin fingernails and have pretty, feminine hands at last (they were the one part of me I thought were pretty). I was introduced to hair extensions, after an unsuccessful flirting with wigs, and eventually I even came to revel in my ability to change my hair in a moment’s notice with them. Long hair today, short hair next week, long again the month after that. Through all of this, I let go of that angry teenager, who in turn stopped shielding the lonely and awkward little girl. I learned to allow myself to be a little bit feminine and dress like a girl sometimes, because I actually AM female, goddammit. And it looked cute on me.

And then I had good enough dental insurance to fix my crooked smile and have a beautiful smile for the first time in my life. That was a goddamned game changer. My brothers and I have all suffered the same over our crooked, missing, brittle teeth (I have the better teeth out of all three of us, but got totally ripped off in the hair department). All of us have dealt with being asked if we’ve ever used meth. By dentists. Having methmouth when you’ve never even so much as smoked pot or had an alcoholic drink makes you self-conscious as shit. And it’s cost all three of us countless opportunities. No one wants to hire a methhead. No one wants to date a weird looking girl with a wonky smile. So when I could afford to bridge the gap in my smile, to have straight teeth, I actually felt more normal and okay than I ever have in my life. I went from this:

to this:

And my world changed. And I felt like I finally won.

What does all of this have to do with ALS. I know. Relax, Sparky, I’m about to get there.

It was a slap in the face to be diagnosed with ALS RIGHT when I thought I had all my shit together. I had a really good job that I really like, I was financially stable. I had just bought a house like a Real Live Grownup. And at last? I was at a really good weight, my teeth were awesome, I knew how to do makeup sorta, my nails looked fantastic, and goddamnit I was PRETTY. FUCKING FINALLY. It took 38 motherfucking years, but I actually felt pretty, and smart, and stable. A Real Live Person Who Doesn’t Suck. I still had some shit to sort through, but I was doing pretty fucking good, all told.

…And then just when I think I have shit solid and good, ALS fucks it all up. I’m not going to be able to do my awesome job that I like, working with people I love, eventually. I have to sell the house I am in love with and didn’t even get to finish decorating because I can’t deal with stairs for much longer. I gained a fuckton of weight back because of my good friend Stress Eating. Hey, did you know there’s a German word for the weight you gain from emotional eating? Kummerspeck. It literally translates to “grief bacon”. Isn’t that the most AWESOME THING EVER. I mean, the weight gain sucked, but there’s a WORD FOR IT. And then being told by doctors DO NOT LOSE WEIGHT, you’re going to need it later, and people with extra pounds just tend to do better with ALS anyway. So here is your medical prescription to EAT WHATEVER YOU WANT. Don’t go all apeshit, I mean, we don’t want to have to fit you for a bariatric wheelchair, but you’re dying, fuck it, eat those nachos. Sucks about the not fitting into your clothes anymore though, yeah? Don’t worry, eventually you won’t be able to eat except through a tube and you’ll fit into all that again. So it all works out, yeah?

Where was I.

Right. Early on, it hit me, something stupid and vain – eventually I’m not going to be able to draw my fucking eyebrows on anymore. And I think I’ve just TOLD you why, that bothered the ever loving fuck out of me. I could rely on people to get me dressed, and probably put makeup on my face, but there were going to be days when none of us could be bothered to do that shit. And it really fucking bothered me to be reduced back to my 14 year old self. I had just CONQUERED that, I am not HER anymore. But I’m not going to be able to put on this Armor of Normal Seeming (+1 to appearance and +3 to charisma) forever. Towards the end of days, I’m going to be this emotionless husk, and I’m not even going to have any fucking eyebrows.

And it’s expensive, and vain, and fuck you I don’t care. I got permanent cosmetic tattooing done on Wednesday. I paid a stranger $395 to tattoo eyebrows on my face. And it looks fucking awesome.

And I can’t quite articulate the sense of..relief? Success? Booyah? Even though it was expensive and there are SO MANY better uses for the money, there’s a weight off of me with the knowledge that I can’t go back to 14 year old me anymore. I’m permanently done with her. My teeth are permanently okay, even if I DO still have a baby tooth on the bottom and not all of them ever grew in, they look like normal people teeth when I smile. And now my face is permanently okay, because I don’t have to draw on expression every day. What was already there has been highlighted, so when my hands no longer work, I can still quirk my eyebrow when you say something stupid. For awhile. And then I won’t be able to move my face at all, but my eyebrow game will still be fucking strong, yo. And I’ll never be that expressionless, angry little girl again. I’ve graduated, the tattoos on my face a diploma from Fuck That Shit University, signifying a degree in Being Just Fine, Thanks for Asking.

I am gonna go down, ALS is eventually going to kick my ass, but Ectodermal Dysplasia can fuck off forever. I beat it. I win.

The Eagle has fucking flown.

No Comment.

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

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

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

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

Learning New Can’ts.

Every day is a voyage of discovery.

I have recently discovered that I can no longer stand up from a seated position without either swinging my arms wildly in front of me for counterbalance, or using my hands to lift my butt off the seat and pitch forward. I have also discovered that I can’t go in to my backyard when it’s muddy anymore, not even to close the shed door because it’s raining hard and the floor inside is getting soaked, because I WILL fall in the mud and bend my umbrella and muddy the hell out of my hands and knees AND lose the freaking key for the shed lock somewhere in the grass. I have also discovered that I can’t step over the threshold of my house without pulling myself up on the door frame or something. Stairs are becoming akin to mountain climbing.

I’ve had two proper falls since the last Amtrak one. I fell on a wet inclined driveway with mulch while getting out of a car. That didn’t hurt too badly except for very nearly ripping my middle fingernail off. That really sucked. And then I had a fall in my driveway while carrying things inside the house. It was my own fault, I was carrying things with both hands and I have recently discovered that well, I should not be doing that. The fall wasn’t horrible, I didn’t break anything, just skinned the hell out of my elbow and landed on my foot wrong enough that my big toe was a solid bruise for a few days.

Lessons learned.

On the plus side? My arms are fucking BUFF now.

I had my follow up appointment with Doctor Goslin last Wednesday. We mostly talked about meds, new insurance, and stupid administrative crap. She checked my strength in my thighs and hands and arms and was satisfied with the rate of decline – there wasn’t any. My calves, though, are basically devoid of useful muscle now and my feet are done. When I don’t wear shoes in the house, my feet just drop on the floor with each step – I call it froggy feet. I don’t walk down the stairs so much as clomp.

The last time I saw her, she recommended a sleep study to see if maybe my exhaustion was in part because I don’t sleep well. The sleep study found mild sleep apnea – no surprise, it runs heavily in my family – but nothing to explain the lack of energy. I’ve got a follow up study on Valentines Day, how romantic! And I’ve been referred to a pulmonologist to see if they have any recommendations about that, but I’ll probably be getting a CPAP machine. It will help with keeping my lungs strong, if nothing else, she said. I can see that. I have no idea how the cats are going to handle it. It doesn’t make so much noise once it’s on your face, but still.

Today, we start the voyage of discovery that is med changes. I was out of Nuvigil about a week before I had my appointment with her, and OH MY GOD the difference. I went straight back to sleeping 18 hours on the weekends and nearly falling asleep at my desk all the time. I went home from work and crawled in to bed with my laptop and passed out at like 9, those nights. Because this is a new year, new insurance, she tried to prescribe me adderall again, and gave me samples of Nuvigil just in case.

Insurance denied the adderall. But not a blanket denial! Just..she had prescribed one to two a day, and they only covered one. It’s the second to lowest dose of it, and I was only ever going to take one anyway, but it took a couple of days to sort it out. And by couple of days, I mean I just got it yesterday. Today’s the first day, we’ll see what happens.

It’s a world of flux and change, even if I have the answers. I know I’m going to lose my ability to walk, but it’s a question of when, and discovering daily the new can’ts. I discovered that I can’t function without some sort of energy med. I don’t have an answer why not, yet, but it’s a new can’t.

But sometimes can’ts are not a bad thing. I can’t do this on my own, because I have people who love me and won’t LET me. I can’t stop moving forward, even through all of the can’ts, because I have so many people carrying me.

I can’t stop believing things are okay, because I know they will be. They’re gonna SUCK and be full of more can’ts than I could ever imagine, but somehow, it’ll be alright. Things will work out.

It can’t happen any other way.

We Still Have a Way to Go.

The Ice Bucket Challenge was amazing in bringing awareness about ALS to the general public. It’s gotten to the point now where when I say ALS, there might be a reaction, and I don’t have to continue, “..Lou Gehrig’s?” People are starting to know what ALS is. And that’s WONDERFUL.

But we’ve still got a way to go.

I am looking forward to a time when someone asks what’s wrong, I say ALS, and there is complete understanding. Not just “oh that’s pretty bad, isn’t it?” but “Oh, this is terminal, I’m so sorry.” It would spare me so many awkward conversations about treatment prospects and recovery times. There’s no gentle way to say, “There is no treatment. This is a death sentence.” It’s hard to drop that on someone and tell them that you’re okay, honestly, in the next breath. “I’m going to die. But it’s okay.”

It would be so much easier if they understood the implications already so that I can be spared giving people tidings of death with every conversation about my disease. Not just the mortality part, but the whole gradually becoming stuck in a meat shell until I suffocate part. It would spare so much awkwardness. I can’t even imagine someone having one of these superficial conversations with me, learning I have ALS, and then Googling it later and HOLY SWEET MOTHER OF GOD THIS IS AWFUL IF I HAD KNOWN I WOULD HAVE BEEN SO MUCH MORE SYMPATHETIC OH GOD SHE PROBABLY THINKS I’M THE MOST UNFEELING PERSON EVER. (I don’t. I promise.) But the alternative is unlimited conversations like this:

“Hi, how are you?”

“I’m going to die horribly, thanks, but otherwise grand. How are you?”

Yeah. Awkward.

Okay, so: story time!

I ran into a coworker in the hall a little bit ago. He’s not with my group, but he works on my floor so I see him a lot. Really nice guy, though we got off to a rough start – we met in an argument over who had booked a conference room (I did! And I proved it!) and he was really bitter and snarky at us even though I GAVE him the room and we just found another one. But he had the good grace to make a point of finding me later to apologize and explain that he was really frustrated with getting kicked out of rooms a lot that day because I guess his admin sucked and didn’t actually reserve ANYTHING. But he was sorry he took it out on me. And we’ve been happy acquaintances since.

…Anyway. He stopped me in the hallway and asked me how I was doing. It was a genuine, “How are you?”, instead of the generic “How are you” that you pray to God the other person will just superficially say “Fine! You?” and you both can go about your day. He was actually concerned, and I was a little confused because we hadn’t talked about my disease before – had he seen the spot on the news?

“I’m good,” I answered him honestly. “Doing alright.”

He voiced that he had seen my walking kind of deteriorating and was wondering if I was okay.

“Ah, that. Well, I have ALS.”

There was a little bit of recognition there, and he sympathetically told me, “I’m sorry to hear that.”

“Thank you. But I’m doing okay.”

“So it’s a progressive thing?”

“Yep, someday I’ll be in a wheelchair.” I shrugged.

“Oh. Is it hereditary?”

“Sometimes. Not with me, but 10% of cases. Usually it just comes out of the blue.”

He was sympathetic, nodding.

“But nothing hurts,” I continued. “I’m doing okay. I’ll be working as long as I can.”

We’d reached the end of the hallway where our paths split. He gave me a warm smile and said, “Please let me know if I can help you in any way.” And he meant it.

I was touched. “..Thank you, I will.”

He turned to go, and said in farewell. “Well, I hope you feel better.”


Yeah, awareness has a long way to go.

When I say Amazing, I mean Amazing.

I gush a lot about Dr. Goslin. BECAUSE SHE IS AMAZING. But, I’m also prone to hyperbole. I get it. You might think I’m exaggerating. But here’s this thing that happened.

Lately, I’ve been having a few more rougher days than usual. Some depression is absolutely expected with a terminal diagnosis. Duh. And I was on antidepressants before I was even diagnosed, because broken brains run in my family and I am no exception. But this last couple of weeks I’ve been more prone to let things get to me, like the Ice Bucket Challenge haters, and slight arguments turn into self-hate sessions, and I am just having a hard time with things right now. In addition to this, things are harder to do, physically. They’re taking a lot more energy than I would think. I’m tired all of the time. And I don’t know if I’m tired because I’m depressed, or if I’m depressed because I’m tired? But everything seems so much harder than it feels like it should be. Friends and family have noticed, and my little brother has mentioned several times joking-but-not that I should ask my doctor for some Adderall. Maybe I’d have the energy to get things done and cleaning won’t be a herculean task that wipes me out for the entire next day.

Monday was a holiday, and a classic Depression Day with lots of sleeping and moping. It carried over to the next morning, which is unusual. I’m typically over it the next day. So I got fed up with being a mopey, tired lump and that afternoon I sent Dr. Goslin an email:

We have an appointment to meet in a month, but I wanted to let you know that when we do meet, I’d like to talk about medication adjustments. I’m not sure the wellbutrin’s doing anything anymore, and I’ve been completely devoid of energy. I know some tiredness is to be expected of course, but for example, yesterday I slept from midnight to noon, ate some lunch, then slept from 2 to 7. And back to bed at 11. It’s to the point my brother told me I should talk to you about adderall or get a speed habit or something. hehe. So when we meet, can we talk about this?

I was expecting maybe an email in a couple of days to acknowledge the question, a quick “Yes, we can discuss your medications when we meet.”

Instead she called me after work. We talked for about about my symptoms, where I was at, and where I thought I should be. She asked what I’d like to do. Do I want to attack the depression, the fatigue, both? I told her I didn’t know, because, (as I said up in that second paragraph) I wasn’t sure if they were separate issues, or if the one was feeding into the other. She gave me many options, made sure I was seeing a therapist regularly, and told me about different drugs, what they did, what their side effects were; she usually prescribes another antidepressant that deals more on the anxiety side, that is a nice compliment to the Wellbutrin, would I like to try it? Additionally we COULD try some energy-producing meds, if I thought that was something I would like to try. She carefully explained all of my options, made her suggestions, and ultimately left it up to me to decide which route I wanted to take.

I didn’t even have an appointment. She won’t get paid for that time, probably. But she made the effort, she called me outside of her office hours, to talk to me and see that I was taken care of. Because she didn’t want me suffering for another month if we could start to do something about it NOW. And this is why I tell people she is amazing. And why I love her. She is one of the most powerful players in my support team and I really don’t know what I’d do without her.

So, without hyperbole and in all seriousness, Dr. Kim Goslin is the mutha-f**kin BOMB.

Having to Rethink

There was another way that yesterday was ALS-centric, and it deserves its own post.

I gave blood yesterday. The Red Cross comes to my work every two months or so, so I really have no excuse to not go down there and bleed in the parking lot for an hour. I’ve been deferred a few times for low iron count, but since I take the supplements daily now, it’s not been a problem. I made it past that screen, and picked a bed.

I had to wait awhile, because another coworker donor was having a bad time. Like, “could not stand up without nearly passing out” bad time with an emesis basin and everything. He was insisting he had to go to the bathroom, they were insisting he lie the fuck down until his color improved because they couldn’t have him passing out in the parking lot. While listening to this, I was thinking about how it’s strange that some people have that reaction. And wouldn’t it be weird if he was actually having a reaction to chemical fumes or something in the bus and not wobbly reaction to losing blood at all.

Cue a panic attack for NO reason at all.

I laid there for five minutes, dizzy and nauseous and not breathing very well, willing myself to CALM. THE FUCK. DOWN. It wasn’t really because I thought there were fumes on the bus, but I told myself IF THAT WERE TRUE THE NURSES WOULD ALL BE SICK, THEY’VE BEEN ON THIS BUS ALL MORNING anyway. Maybe because I was mortified at the thought of having a problem at work that might require ERT? I’m not sure. None of my thought trails led to further freaking out, except the FACT that I was freaking out very quietly. I CAN’T BREATHE. Of course you can, idiot, calm yo shit. I AM GONNA PASS OUT. No, you’re not, you’re fine, and even if you did, there’s nurses here, so so what. I AM GONNA THROW UP. No, you’re fine. Cheesy Christmas, woman, chill. I’M FREAKING OUT. Well, yeah, but you KNOW that, so what’s the actual problem? UH..NOTHING I GUess okay I think I’m okay.

The phlebotomist finally came back around to me, got the needle started, and as I usually do, I let my mind go wherever it wanted. And then a quiet voice spoke in my head.

Idiot, you have a terminal disease. Should you REALLY be donating blood?


While I bled into a bag, I looked things up on my phone. There are a couple of hospitals which have a policy against people with ALS donating blood. There’s a forum with someone asking about donating organs or blood, and some jackass going off on them about how they’re APPALLED YOU WOULD EVEN THINK THAT WAS OKAY FOR FUCK’S SAKE YOU HAVE A TERMINAL DISEASE AND NO IDEA WHY IT HAPPENS YOU ARE LITERALLY POISONING PEOPLE IF YOU DONATE YOUR DISEASED PARTS YOU EVIL SON OF A BITCH. Which is why I don’t go to forums usually. There was NOT, however, anything on the Red Cross site or anywhere on the web that said no. Blood donated to the Red Cross doesn’t always get transfused, it gets used for research and medicines, too, and I don’t know if that means even if my blood can’t go in to a person, could it be used for medicine?

I finished bleeding, they gave me the standard spiel, call this number if you experience any flu-like symptoms in the next 7 days, or think of anything that might mean your blood shouldn’t be used, go eat some cookies and have some apple juice.

I finished up in there, and called that number later. The nurse on the phone didn’t know if it was against the rules for ALS people to donate, she couldn’t find out anything that said no. She would do some more research, though, and call me back or send a letter.

We don’t know what causes ALS. It’s not contagious, as far as anyone knows. But we don’t know a lot about it, and I’m not sure it’s a good idea. The Red Cross will be the final authority, of course. I’m sad about not being able to help out this way anymore, it’s a simple, easy thing to do and it can be tremendously helpful and they ALWAYS need people and I’m O+ so 85% of the population can be given my blood.

Unless it’s tainted.


Dr. Goslin’s sidekick, the amazing and trusty Donna, emailed me this morning.

“Cigna denied the prior authorization request for Athena. Dr. Goslin did a peer to peer review, and they still denied it. It is unfortunate that this got dragged out so long, only to have them deny it in the end. I am sorry.”

Athena, of course, being the company that does the genetic testing. We were going to see if I had the markers to allow me to participate in the bulk of clinical trials going on. And Cigna said no. Even after Dr. Goslin explained to their faces why it was important. And it IS important.

I feel defeated. Like…this test? And the ability to participate in the best research going on? It gave me hope that maybe my fucking disease might be USEFUL to someone. We won’t see a cure for this in my lifetime, but goddammit I wanted to be a datapoint at least in GETTING there. I want to HELP.

I don’t know how much the test costs. The last one was nearly $12,000. So yeah, I won’t be able to just DO the test on my own. I am beyond frustrated. I am angry, defeated, disappointed, crushed, depressed, all of this and everything else.

I want this fucking disease to mean SOMETHING to SOMEONE. To get SOME good out of it. To be useful.

And now instead of having the chance to be a data point, I’m relegated to be a statistic.

Fuck You and Your “It’s going to get worse”.

Okay so wow.


But this was important. This is something I care a lot about. If someone out there wants more information about this, I’d like to be able to step in and help out. And Jack asked if I’d seen them, and linked me, so I clicked.

Most of them? Lovely and supportive. Hooray for those people. I love them. And my friends who spoke up in support. I love you.

But a hearty FUCK YOU to the shitshark who felt compelled to comment “Pretty lady if she didn’t put all that metal in her face.” Yeah, I got enough of that oh, at EVERY FAMILY GATHERING GROWING UP EVER. And I didn’t give a shit about how my FAMILY felt about it, why the fuck would you think YOUR opinion matters to me? Get fucked SIDEWAYS. I didn’t have to weigh in though. My posse stepped up and put him straight before I got there. <3 These other ones, though. HOLY SHIT, people. "My father died because of ALS. He was one of four in one family. And I tell you to have the voice record is the smallest problem you will have when you have ALS!!!" "Mom passed from ALS in 93, not bn able to talk was the least of our worries. Absolutely horrible disease" …I've actually heard of people approaching someone with ALS and say, "It's going to get so much worse" ..AT A MOTHERFUCKING SUPPORT GROUP. GOD DAMN IT, PEOPLE. Here's a clue you are so DESPERATELY NEEDING: Telling someone with a terminal, degenerative disease "it's going to get worse" HAS NEVER BEEN USEFUL TO ANY ONE IN THE HISTORY OF FOR FUCKING EVER. The only one who get ANYTHING out of that is YOU because you get to feel OH SO FUCKING KNOWLEDGEABLE. Your dad has ALS so OBVIOUSLY YOU KNOW ALLLLL ABOUT IT and someone who actually HAS this disease HAS NO IDEA WHAT THEY ARE IN FOR so you had BETTER TELL THEM. Fuck you. Keep your fucking mouth shut. NEWSFLASH: You are NOT helping. You are NOT helping me prepare for the harsh realities of the disease. You are NOT educating me. You are not even freaking me out. You are JUST PISSING ME OFF. Let me educate YOU. When you are going through the medical rat maze of trials and tests, and ALS is among the possible exits, THEY TELL YOU ABOUT THE DISEASE. If you didn't know about it already, THEY TELL YOU WHAT IT IS. When you narrow it down, THEY TELL YOU A LOT MORE. If you don't do the sensible fucking thing and research it yourself, there are medically trained professionals who will talk to you about it. THE PROCESS OF DIAGNOSIS COMES WITH AN EDUCATION. And here's something I did NOT know. When you are diagnosed? THEY GIVE YOU BOOKS ABOUT IT. Seriously. Like, six of them. My diagnosis came with an appointment with a social worker, and she had books for me, a book for the people who would be my caregivers, and pamphlets about estate laws and wills and power of attorney. People bend over BACKWARDS to tell you anything you could possibly want to know. And by "people" I mean TRAINED AND LICENCED MEDICAL PROFESSIONALS and not "some stupid opinionated bitch on the internet." So let me be the first and hopefully last to let you know, you're not helping. You're not wise. You're obnoxious, detrimental to my emotional well being, and a waste of my time. It alllllllllllllll goes back to the Silk circle, and the magic phrase: "I'm sorry this is happening." Comfort in. Otherwise shut the fuck up. And if you make the mistake of telling me "it's going to get worse" to my face, I will obligingly tell you all of this in person. And just when you think I'm done yelling? It's going to get worse.

The Interview

The interview I did aired last night; I sat in my living room with my brother and his wife and watched it streaming off his laptop to my television. I guess I didn’t look TOO stupid. She mispronounced my name, but it was otherwise a really good story and I’m happy I was a part of it.

Here it is!

So now the two of you who read this who don’t already know me personally know what I look and sound like. XD

I came in to work this morning to an email from a coworker:

I saw the story on KPDX regarding your diagnosis of ALS and the preparations for your future with this disease and wanted to reach out. I am the Employee Resource Group leader here in Oregon for the American Veterans ERG. If you were not aware, American Military members are twice as likely to contract ALS as the general population. The cause is yet unknown. Due to this connection between veterans and ALS, my ERG is using Q3 to promote ALS awareness here in Oregon.

I was reaching out to you to see if you would be interested in being involved in this event. I would love to be able to meet with you and talk to you about what we are planning to do in regards to raising awareness here at Intel. Feel free to call or email anytime so that we could arrange a meeting if you are interested in doing so.

I told him I’d be happy to be involved. I hope we figure out what the hell that correlation is someday, because yeah. Vets and ALS. Such a strange and scary statistic.

My facebook has been blowing up today, all kinds of people linking that video and tagging me, and SO MUCH SUPPORT and encouragement from those I love. Every day I learn how well I’m loved.

Hooray for getting more people aware of this stuff, and hooray for it being OVER so I can stop being nervous about it. Heh. “When she’s not baking, she’s banking.” I SEE WHAT YOU DID THERE, NEWS PERSON.

6-11-14 Followup, Checking In.

I had my followup with Dr. Goslin about the prednisone and whatnot. More shocks and stabs, more with the scrapey tool against the arch of my foot, more of the “hold your arms out” pushy/pully tests. She concluded that there’s no difference between this session and the last. So that either means the prednisone is keeping me stable, or my progression is just so slow that there wouldn’t have been a difference anyway. She’s taking me off the prednisone now, and we’ll check back in a couple months to see which is the case. If the prednisone was helping, then we’ll have to talk about alternative treatments, maybe IVIG.

You can’t, of course, just stop taking a steroid. It’s a recipe for bad times. So we are tapering me off; down 30 mg from the 40 I was taking, for 4 days, and then down 5mg every four days after that until I’m done. I’m happy to be done with it. I’m grateful that the bitchy side effect never happened; as side effects go, weight gain is not that terrible. It still SUCKS, do not get me wrong, but at least I wasn’t screaming at my loved ones while I bloated up like a whale.

Dr. Goslin is still a little stumped by me. I’m just…odd…enough that she’s not comfortable putting the ALS stamp on my forehead with assurance. She’s like, 99.9999999999999999999999999% sure that’s what’s going on, but how did she put it, something to the effect of, my symptoms are exceptional outliers. So basically, “I’m really pretty sure that this is ALS, but juuuuuuuuust in case some years down the road it turns out to be something different, remember she wasn’t completely certain.” She asked that I be open to further experimental treatments as ideas occur to her.

Let’s see. The only other thing going on with all of this is that I have a cough – which may just be a cough; sometimes? You just get a cough. It’s been about a month now, though. Eeeeeeverybody in my office got some kind of plague, but I don’t think it’s that, as I FEEL okay, it’s just that I cough and clear my throat a lot. My nephew was sick about a month ago and had a cough with it, but it also had a fever, which I never had. And my coworkers and nephew are all better now. For an unrelated reason, I was checking on the various side effects that my Fistful O Meds have, trying to track down the actual culprit for the heartburn I have a lot even though I’m taking ranitidine now. I found out that one of the possible side effects of riluzole is…coughing.

I’ve been on riluzole…about a month.

I really hope they’re not related. It would be a REALLY SHITTY CHOICE, do I live for a little longer? And have a cough for my entire life? Or no cough, but dead sooner. Or potentially take ANOTHER med to counter that.


Fatty McFattersons

Rooouuuuuuuuuundabout four, five years ago, I hit what you might call “a rough spot”. End of my marriage, purchase of a house, the move, mom had a health crisis, things like that. A rough spot. And I grew up incredibly poor, so food has always been a comforting thing. Thus, I have always been…a little rounder than necessary, usually right around 160 when the charts all say I should be 140, but fuck those BMI charts anyway, I like a little curvy. But this little “rough spot” pushed me to be far heavier than I’ve ever been. I freaked out when the scales tipped past 200, did the paleo diet thing, and lost 40 pounds.

I weighed pretty close to my target weight, I had a shiny new house that needed some decorating, I looked cute, my job was going great!

And then this whole thing kicked in for real. Annnnnnd I began stress eating. And so I gained back ten pounds.

And then my little brother and his family moved in with me while they wait for their new home to become ready, and they have a little kid, and they eat a lot of processed food. I am surrounded by unhealthy food and people giving me permission and non-judgment to eat it. And it tastes good and is easy, which is why I got fat in the first place. So I eat fast food while we are out, I eat processed food smothered in ranch while I’m home, and drink sugared soda again instead of diet. And so I gained another ten pounds.

And theeeeeeennnnnnnnnnnnnnnnnnnnnnnnnnnnn prednisone.

Fucking prednisone.

With the water weight gain and the wanting to eat ALL. THE. TIME. And there’s nothing around me but junk food. And so I gained another twenty pounds.

So now I’m just about back to the weight I was when I lost my shit in the first place and started hardcore dieting. I had to buy new clothes because I’d either thrown away or turned my fat pants into painting pants. I feel gross, I feel unattractive, I feel like a loser. …As I shove another handful of candy in my mouth because holy SHIT does the prednisone make me want to eat, like, ALL THE TIME. And my life is incredibly stressful right now, so I console and reward myself with delicious food. And so I gain weight.


I tell myself I’ll get back on the paleo diet just as soon as my little bro and his family are out – I’ll be cooking for myself only, and I can buy non-processed shit. I won’t have someone else to cook for me, and I won’t be going out to fast food every other night anymore. I will Eat Right and Lose Weight. And I won’t be on the prednisone for much longer, so that will help a lot, too.

Except eeeeeeeverything I’ve been reading about ALS has said in big bold print that if you have ALS, YOU SHOULD ABSOLUTELY NOT DIET TO LOSE WEIGHT. Because…well….you’re not going to be able to eat, eventually, and you’re going to NEED that extra weight to live off of. And statistically, my doctor tells me, people with extra weight tend to have better prognoses.

It’s every fat girl’s dream! Not only PERMISSION, but RECOMMENDATION to stay fat!


…But I don’t WANT to be fat. Yes, food is delicious, but I really liked being able to fit into 32s. I felt healthier, I looked cute. I want to be there again. I want to be rid of this emerging double chin. I want to fit into medium girls’ shirts – I’d say small, but I’ve always been too busty for that nonsense, and I am OKAY WITH THAT – because I have some really awesome ones. My Night Vale shirts are all mediums and I miss them. I want to not sweat so goddamned much. I want to not have my shirt flip up in the back when I sit down. I want to be not so self conscious about it when it does.

I don’t want to be fat.

I have the power to not be fat. I have the self control. I have proven this. In 5 months, I lost 40 pounds. I can do it again. I just don’t know if I SHOULD. I mean, yes, eventually I will not be able to eat at all. Probably. It doesn’t always happen. I don’t think this necessarily gives me permission to eat whatever I want though. And I don’t know that hauling around this extra weight is any healthier, in the long run. It’s such a slow progression, and I can’t be fat for years and years “just in case” I start to become unable to eat.

So do I trade healthier and happier NOW for just healthier later?

I will ponder this some more, while I eat my Taco Bell lunch.

Mmmmm Baja Blast.

Making Video about Audio

I’ma geek out for a minute about voice banking. Ready? Here we go.

Voice banking is one of the most amazing things to happen for people with ALS, or any kind of degenerative disease that robs someone of their voice. Model Talker allows you to record your own voice, from which they’ll make a synthetic version for use with a text-to-speech program. It effectively lets you “talk” with your own voice, after the disease takes away your ability to speak.

It’s amazing and important and I’m SO GRATEFUL that it exists and that I’m allowed to participate in it. It’s currently in beta, and anyone can apply to be a part of it. ModelTalker is a program you install on your computer, and then you record yourself saying prompted phrases by speaking into a USB microphone headset. It’s best to bank before the disease hits your voice, so that your computer generated voice is as true to your natural voice as possible; so the sooner people with ALS know about it, the sooner they can start banking. It’s a fairly sizable time commitment – I understand there’s about 1600 phrases to record before they have enough sounds to create your voice from. The sentences I’ve seen so far include lines from The Wizard of Oz, and the phrase “There’s more than one way to remove a tooth.” I’ve only just started; I recorded the calibrations and the first ten sentences last night. They’ll listen to the samples, and suggest changes, and then I’ll record the next set. I will be sitting at my desk and recording goofy sentences for hoooouuuuuuuuurs.

But it will be TOTALLY WORTH IT, when my computer generated version of me calls someone a fuckwit for the first time.

This technology is SO IMPORTANT. It’s completely dehumanizing, being unable to properly communicate with others, and that idea frankly scares me. The fact that speech synthesis exists at all is fantastic, don’t get me wrong, but we need to take it a step further. Just look at Dr. Hawking, his’s become a joke, how robotic his communication is. To have to rely on a robotic voice to tell someone you love them? To try to explain to your loved one why you’re crying with this…fake, cold, not-really-a-voice? That is the worst thing, and I can’t even imagine the stress that adds to an already horrible situation. ModelTalker gives you back some semblance of who you were, to continue to be who you are. It gives you back a little bit of what this stupid fucking disease takes away from you.

I was contacted some weeks ago by my local chapter of the ALS Association wondering if I would like to be part of a local news story about voice banking.

I said yes, please.

They’re going to come to my house next Thursday and film me doing some recording, and then interview me about it. I’m really happy to have the opportunity to evangelize about this technology, to let people know it exists, and it’s out there for free. Technology is solace for people with ALS. It helps us travel when we can no longer walk. It helps us communicate when we’ve lost the ability to speak.

It helps us continue to be human, for just a little bit longer.

Playing House with Godzilla

Before I had a name to my disease, I was calling it Godzilla Disorder.

…Okay, yeah, I need to explain that one.

I didn’t have a name for my problem, only symptoms. Only theories. And so, when someone asked why I was limping, I had no real answer. Just vague theories. “I have some kind of neurological thing going on.” Hand-wave. Again. How do you break that to someone who’s only a casual acquaintance, anyway? “Just losing my ability to walk, thanks. How are you?” While complaining about this dilemma to my very patient best friend and main babe Danielle, she suggested I just tell people “I got attacked by Godzilla in the legs.”

And this is why we love Danielle.

And so ever since, I refer to this as Godzilla Disorder. Even now that it has a proper name. A name scarier than Godzilla. Someone later asked if I called it Godzilla Disorder because it made me walk like I was in a rubber monster suit. Which also made me laugh. Thankfully this was pre-braces, so my walking is SO much better now. I’ll have to attack Tokyo another day.

So, to get to the REAL reason for this post. It’s about back when I was still calling it Godzilla Disorder because I had no name for it. When we didn’t know what was going on, and I’d been through a lot of doctors and tests and MRIs and a spinal tap, I noticed that everyone had their pet theories for what was wrong with me. I had many people playing Dr. House and suggesting obscure things that aren’t ALS or a neuropathy but have similar symptoms. Could it be a vitamin D deficiency? Lead poisoning? Shellfish poisoning? This other, obscure disorder that has maybe 3 documented cases in the US but it’s worth a shot to look in to because it just causes weakness in the feet and stops there?

I’ve noticed this is a pretty common way for people to react to a scary medical unknown. It’s curious as a coping mechanism – you feel powerless to help, so you look for answers and try to be helpful, just in case the doctor ‘forgot’ something. And I’m sure there are doctors that have overlooked everything. It’s really tempting to think that maybe it’s not this complicated, maybe I just need to take some supplements and be cured! And there’s the tiny, egotistical desire to find the problem and be the fixer! 

For example, my aunt asked me to tell my neurologist about the time I got really really sick from shellfish (on my BIRTHDAY. We rented a cabin on a really awesome bed and breakfast THAT WAS A BOAT ON THE OCEAN -fucking awesome and I was looking forward to it for WEEKS – and we checked in and then went out to a really nice lobster dinner that I didn’t even get to eat because we started with steamed clams and I won the shellfish lottery and got CRAZY SICK from one while everyone else was fine and I spent the rest of my whole amazing romantic birthday trip throwing up. FUN TIMES.). She’d read that shellfish poisoning can actually stay in your body for years and cause problems that mimic neurological disorders.

First of all, good memory, Aunt Phyllis. Second of all, way to do your research! 

All of this isn’t a rant – I’m not complaining about this at all. Far from it, actually! I am totally fascinated with this, and I’ve learned some really interesting things. There are an AMAZING amount of things that mimic symptoms of ALS. And it’s important for those I love to cope with this in their own way, and sometimes that way includes researching for that one thing that I might have that is totally curable. Something, anything that isn’t ALS. Anything to remove Godzilla’s teeth. Here, just take these vitamin D pills and it will all just…go away.

A lot of people in my life have done this, with a few really ardent researchers. Like Lance. Research is what he does, in all things. When things first started coming to light, every day he had a new wiki entry about some new disorder – and they were all about obscure disorders that get better with treatment, or some weird variant of a scary disease that is a not so scary version of it. Always something optimistic. 

I’ve told my friends and family that I am happy to forward these thoughts along to Dr. Goslin; she’s never been insulted or offended with my questions. In fact, she responded to Phyllis’ food poisoning theory with, “I don’t think you have this, but I appreciate that people are continuing to think about this.” She’s amazing.

Sometimes, it has actually been useful – my brother suggested I tell her about the genetic defect that I share with my brothers, because apparently it has been shown to have a possible link with neurological disorders. I had no idea. My neurologist is very interested in that research, and has asked me to find out which particular variety of that defect I have, because there’s like 200 of them. If I find out, and there’s a link, then I can help that research by becoming a data point. So, by all means continue. I know that it’s important for you to feel like you have some control over what’s going on, to be helpful.

And who knows, maybe you WILL find the answer and it will be simple. 

Just, please don’t be offended when I shoot down your theory with, “I’ve been through that line of reasoning, here’s what came of it.” I’ve been tested for heavy metals. At this point I’ve been tested for every damned thing missing or present in my blood. And my spine. Yes, the doctor has heard of that disorder. And that one, too. She’s a neurologist specializing in motor neuron diseases, she’s very smart.

And she has access to Wikipedia and WebMD, too.

Where the Fuck’s My Trophy, Then?

A couple of weeks ago, I got a letter from the ALS Association: “The March of Faces Banner Campaign is a wonderful way to promote ALS awareness. A banner consists of a pictorial display of 20 courageous women and men, both past and present, who have been diagnosed with (ALS)… We are writing to invite you to become part of this important campaign by adding a picture of yourself to the banner.”

It’s an awesome idea, and I’ll participate, of course, if nothing else because I think it’d be awesome to have some girl with piercings and purple hair on their banner alongside all of the typical 50/60 something grandparent types. But there’s one thing about that letter that bothered the hell out of me. Something that’s ALWAYS bothered me when people talk about cancer, or ALS, or any other horrible disease.

There is nothing inherently courageous about being diagnosed with a terminal disease.

I’ve had a bone to pick with this thinking for a LONG time, and it’s especially near and dear to me now that it applies to me, too. ALS is not a qualifier for bravery, world. A kid with cancer is not automatically brave. Bravery and courage is a behavioral CHOICE. I did not have a choice in this. Because if I had? I would have said no. I AM A COWARD AND WOULD HAVE DECLINED, THANKS. BECAUSE I DO NOT WISH TO DIE.

Especially not of something like this.

Not everyone who has a terminal disease is courageous. Some of us spend the remainder of our lives whimpering in the corner. Or punching holes in walls. Not all of us just take it on the chin and carry on. We’re human. We’re weak.

And we’re scared.

Mostly though? Referring to someone as “courageous” just because they have a disease is completely unfair. It sets an expectation on them, that they may or may not feel up to living out. “The brave kids in the childrens’ cancer ward” are scared out of their minds. They shouldn’t have to BE brave, and you’re unjustly setting that burden on them.


The world seems to expect someone with a terminal/chronic illness to behave one of two ways. You can be bitter and weak, or you can be brave. You can never, never be both. You’re either angry and sick, and someone to pity, or you’re brave and courageous, and you’re someone to admire.

Guess what. We don’t need your pity OR your admiration.

The real harm in this thinking, besides the HOLY SHIT CRAZY AMOUNTS OF SELFISH, is that when you fail to be courageous all the time, they become bored with you and your story ceases to be compelling. How dare you be human. YOU ARE SUPPOSED TO BE AN INSPIRATION. YOU ARE BRINGING US DOWN WITH ALL THE CRYING. It’s not about how they appear to you, the reader; it’s a very personal and intense battle against their own bodies, their own hearts, their own faith. I do not have ALS to inspire you to believe in the triumph of the human spirit. The human spirit can go fuck itself. Sideways. And you’re just a casual observer in this fight. You don’t get to pick and choose the qualities that make for a better story. If you’re going to support someone with a chronic or terminal illness, you owe it to them to allow them to be weak, too. You don’t just cheer on a runner at the finish line. That’s not when you need the encouragement the most. You don’t need to be told you’re amazing when you’ve just won. You need to be told waaaaaaaay back at that third turn, there, when your lungs were on fire and your legs were jelly and your mind was a blur of I CAN’T. I CAN’T. I AM GOING TO DIE HERE. I CAN’T. I CAN’T.

I’m doing just fine. I will be brave in parts, and weak in parts, and strong in parts, and soft in parts. Sometimes I’ll scream rage into the void, sometimes I’ll melt quietly in the corner, sometimes I’ll be paralyzed with fear. You’re welcome to observe, but I don’t owe it to you to make myself a plucky heroine in a made-for-TV drama. I’m not in this to be a Reader’s Digest inspirational story. I’m not courageous. I’m just a sassy bitch. So many other people out there have it so much worse, there are so many other more interesting stories to be told. It’s just that I can only tell mine.

It’s the only one I know by heart.

I Am Not My Diagnosis.

I am not ALS.

I’m not even a PALS. And not just because I hate that cutesy-ass word for us.

I am a person who happens to have been diagnosed with ALS.

I am very clear about this particularity, because I am terrified of becoming my diagnosis. To get to a point where that is all there is to me. I’ve seen what that is, and how miserable it is to be around, and I can’t even imagine how miserable it must be to live that way. To get to a point in your life where all there is to you is a terrible disease. Where you feel there is nothing more interesting about you, nothing more important about you, than a medical diagnosis.

I know several people who are their disease. Fibromyalgia in most cases, Crohn’s disease or MS in another. And these are horrible things to have, their suffering is very real, do not misunderstand, and I sympathize with them completely. But every single conversation with them somehow comes around to their disease.

“It’s a beautiful day!”

“Yeah I’d do gardening if I wasn’t sure it’d cause a flareup.”

“I had the most delicious cheese the other day.”

“I can’t have cheese, it wrecks my guts.”

“Today is my birthday. This statement is all about me.”

“…I have Crohns disease you know.”

It becomes tiresome. Quickly. You stop hanging out with these people because every single thing always comes back to their disease. And they might be lovely people, and their struggle is very real. …Usually. It’s been my unfortunate conclusion that most people who complain the most are the ones suffering the least. The girl I know with Crohns is the major exception; she’s been through a lot of surgeries, had a lot of her guts removed, and her pain and suffering is a very real thing. But still. That’s all she ever talks about. Even when she posts about something pretty she’d like to buy, it inevitably includes a wistful comment that she can’t afford it because she can’t work because SHE HAS A DISEASE YOU KNOW.

It’s the same as people who are nothing but their sexuality – be they HETERO MAN or LESBIAN or whatever, wearing that one little piece of identity like a badge and an explanation. “Describe yourself. ” “I’m a gay man.” “…okay but what else? Do you like pasta? Where are you from? What kind of hobbies do you have? What information can you give me besides your preferred gender for sexual contact? THERE IS SURELY MORE TO YOU.” Or their job. GOD. THAT one. “I’m a lawyer.” “Okay, but for the OTHER hours of your life, who are you?” “…I don’t know what you mean.”

“Describe yourself.”

“My name is Ella and I have fibromyalgia.”


These people are MISERABLE to be around. They suck the joy out of every conversation with each reminder of their sickness. They dampen the mood, they darken the tone, they blight your soul a little bit. Speaking to them is an effort, and you have to mentally brace yourself for each encounter. And even worse – they harden your heart. It gets to a point where each facebook post makes you care less. When they post about wasting an entire day because they just couldn’t get out of bed for the pain, you get to a point where you just keep scrolling instead of replying “Oh my god! I’m so sorry! What can I do to help?” because…that’s the third time this week, and there’s nothing else to their feed. It becomes old hat. Typical. And I hate that you make me feel that way. And when “typical” for you is some variance of “I have a disease” then maybe you need to reevaluate some things.

This disease is a facet of me. It’s a very real part. And a very important part. But it is just that – a PART. Just like my gender, the color of my eyes, my weight, my sexuality, my hair color, my preference for apple juice over orange.

Every new development in my progression pushes me closer to the “I am my diagnosis” line. Every new prescription makes me feel like I am getting closer to being THE GIRL WHO TAKES ALL THESE PILLS BECAUSE SHE HAS A DISEASE. I refuse to hide the braces when I wear skirts, because fuck that noise, but it is an advertisement that I HAVE SOMETHING WRONG WITH ME EVERYBODY. Every missed hour of work due to a doctor appointment I have to make, every concession to my lifestyle I need to make, every time I ask to be dropped off at the curb so I don’t have to walk allllllll the way across a quarter mile of parking lot, choosing the bathroom stall with the handrails because it’s just easier, makes me feel like I’m becoming more of That Girl. That Girl with ALS.

It’s a hard line to walk. I’ve become aware that I talk about my situation freely – it’s nothing I’m ashamed of, nothing that I’ve done wrong, and so it’s nothing to hide – but I need to be careful that I don’t mention it in EVERY conversation. I talk a lot about it because it’s new. I want to be completely upfront about it, and I know people are curious but afraid to ask for fear of offending me somehow. So I’m blunt. But that’s not all I talk about. This blog is “All ALS, All the Time”, because that’s the POINT of this space, but in my journal, my facebook timeline, my day to day conversations, there’s so much other stuff going on. So many happier things. So many better things to talk about. There’s so much other interesting shit going on out there. ALS is depressing and boring, stickers are awesome. Japanese tea ceremonies are fascinating. Horchata is the fuel of the gods. Today’s Google homepage has a Rubik’s Cube you can solve!

There is so much LIFE out there. So much life in ME. So much more in there than just a shitty disease.

Yes, I have ALS. And grey eyes. And O+ blood. And several tattoos. And a mole above my lip like a beauty mark. And eyebrows so blonde they’re transparent so I have to draw them on every day. And two piercings in my nostril. Any of these things are just as valid a description of me than any other, and they’re not even the most interesting descriptions. They’re just descriptions of my body. Which, I like my body, but it’s not the best part of me. My kindness, my love, my fondness for petite swiss fruits candy, my mouse-like sneezes, my sarcasm, these things are more important. They’re WHO I am, not WHAT I am. And the WHO will always outweigh the WHAT.

Which is why it’s a fucking shame when you make the WHAT your WHO.

Spare Me the Explanations

My workplace has been STELLAR about all of this. Just putting that on record. They’ve been very accommodating about the time off, and there are a metric FUCKTON of resources available to me, including generous disability packages. And one benefit I just learned about was something called a Medical Case Worker – someone to work closely with me and act as liaison between my job and my doctor to make sure that I’m getting the assistance I need to be able to continue to do my job. I don’t actually need anything yet, but I’m trying to get everything figured out early so I can easily manage changes as they come up and not have to scramble.

I met with my medical case worker over the phone today. She was a very chirpy woman, she briefly explained who she is, and what she can provide, and asked me if I could tell her a little bit about why I’m contacting her.

“I’m not sure how much you want to know,” I told her, since there are all kinds of corporate things everywhere that carry DO NOT DIVULGE PERSONAL INFORMATION warnings on forms and everything. I don’t care who knows what, but I could see how an unsavory management type could use this against me.

She explained cheerfully that I don’t have to tell her anything I don’t want to, but she’ll be working closely with my doctor to arrange accommodations as needed, so she’ll need at least the basics.

“Ah. Okay then. Well, I’ve been diagnosed with Lou Gehrig’s Disease.”

I could hear the change in her over the phone. It was a moment before she spoke, and when she did, it was a human being on the other end and not SmartyCo Medical Case Worker. “…I’m so sorry.”

And I let out a breath I didn’t know I’d been holding. I’ve come to realize over the last month that I really, really prefer to tell people when they already know what ALS is. There is this intense relief that comes over me when I break the news of my diagnosis to someone, who knows EXACTLY what that diagnosis means. I don’t have to have that typical awkward conversation:

“I have ALS.”

*Puzzled look*

“..Lou Gehrig’s?”

“Oh! I’ve heard of that. But I don’t know much about it. Is it pretty bad?”

“Well it means I have a terminal disease, so yeah, that’s pretty bad.”

And then they feel horrible and stupid, and I feel like a heel. But when someone already knows what it is, what it means, then the sympathy happens organically, no pressure, just a gentle “I’m sorry” and we can move on from there. They know exactly what I mean, they’re allowed to express how genuinely sorry they are; it’s a short intimate exchange and then we can continue. Much preferable to a stilted conversation with half-explanations while my awkward social situations allergy flares up and my brain wants to claw out of my nose to get out of having to have this conversation.

But as it was, I said a grateful “thank you” and we continued to talk about what I need, and what’s available to me without things going all squirrelly. And I was very relieved about that. It makes things so so so much easier.

Which is another reason why I really need to be more active with raising awareness about this fucking disease.

The Followup

I had my followup with Dr. Goslin today. I had some questions for her, and I wanted her to meet my brother Gecko and my will-be-primary-caretaker and best friend Danielle. Gecko unfortunately couldn’t make it because the poor bastard got a migraine this morning. Suck.

I went in expecting to be taken off the prednisone, I haven’t noticed any change at all except in my weight. I’m all pooufeeh. She did the standard pushme-pullyu battery of tests, and then a little bit of EMG. She decided that I’ve actually gained a little (liiiiiittttle) bit of strength. There was a nerve signal she caught slightly today that she wasn’t able to get at all before. We’re going to keep me on the prednisone for another month, and if there’s another increase, then we’ll discuss more permanent treatment along that line, because prednisone forever is not an option. She not only told me not to worry about the weight gain, but that it’s GOOD that I have some extra weight. People who are a bit overweight tend to last longer, she said. And I’ve already got a slow progression going for me, so….keep that up.

So not only doctor permission to not lose weight, but an active advisement AGAINST it.

Now’s the time you kinda wish you were me.

We talked about familial ALS versus spontaneous, and she told me that there’s increasing evidence that a larger portion of ALS patients have familial ALS than the 10% everyone thought. There is a lot of research being done towards this, and that’s also where a lot of clinical trials are. Our next step is to get approval from my insurance company to get the genetic test that will show if I’ve got those markers or not, and thus make me a good candidate to participate in all the exciting things going on. I don’t think my insurance will turn it down.

We’re also going to start me on Riluzole. Because taking 8 pills a day wasn’t enough. But also mostly to see how well I tolerate it. Because it’s known to do SOMETHING, and if it’s not going to hurt me, then why the hell not. We did some baseline blood work today to measure against potential liver damage down the road, and we’ll see if I get nasty side effects that make the potential extra 6 months not worth it. I don’t wanna have 6 more months of feeding tubes and ventilators if I spend my whole life up to that point feeling nauseous.

ALSO I have an appointment in 3 months to attend an ALS clinic. Mostly to get a feel for how they work, and also baselining and meeting all of the key players in the medical soap opera that is becoming my life. That will be in August. I’m really curious about it.

I forgot to talk to her, but emailed later and discussed that way, about anxiety. I don’t want to be on a maintenance drug for it. At all. Most of the time I’m handling everything just fine. But there are some nights I need a little hand. Usually when I’m trying to think about something really important that I NEED to be thinking about. Like advance directive. I’ll sit and think about it and my brain suddenly goes all staticky and KRRRRSSSSSSSSSSSSSSSSSSSSH and then I either have a panic attack or my mind goes OMG KITTENS AND STICKERS AND SUNSHINE YAY and thinks about literally ANYTHING ELSE. So I told her it’d be nice to have a hand with that, sometimes. She suggested ativan, which I’m leery of because it can be habit forming and makes you sleepy more than just calm.

And then she said, “Medical marijuana can certainly help with anxiety and there are many non-smoking forms of it if you wanted to try that.”

..I have a lot of complicated feelings about pot. Mostly negative. I’ll be posting about that allllllll on its own. I’d be lying if I said I hadn’t thought about it, though – I’d actually mentioned it offhand before to her because I’d thought about giving it a shot for my chronic headaches, before. But yeah. I need to figure some things out. In the meantime, I have a few ativan prescribed to me. I don’t have work tomorrow, and no appointment until 1PM, so I’ll probably take one tonight and see if I can work on advance directive stuff.

So that’s where we are at with the stuff. Tomorrow is my followup physical therapy/orthotic appointment to see how I’ve been dealing with the braces (awesomely). And now you are up to date.

An Unnecessary Secret

I don’t care who knows I have ALS.

Just putting that out there.

I’ve had more than one person, upon learning about my diagnosis, “Don’t worry, I won’t tell anyone.” …Why the fuck should I worry about you telling someone? Tell everyone, I don’t give a shit. It’s not a dirty secret, it’s nothing bad that I did. I’m not ashamed of this. ALS does not diminish me in any way, it just means there’s some shit I can’t do so easily anymore, and someday I won’t be able to do it at all. So what.

And in some cases, it’s easier for me if you DO know. It’s better that my coworkers know what the hell is going on, so that they don’t think I’m snubbing them when I’m invited along for the 3PM team walk for beverages and exercise. I adore being included in this kind of stuff, and I worry about being seen as aloof when I repeatedly decline. If they know that I have ALS, then they realize that no, going on a walk isn’t going to happen, but hey, invites after work for beer and hangouts is lovely (even though beer is gross and tastes like gasoline and rotten wheat). Knowing that I’ve got this stupid thing going on means that when planning team building events, mayyyyybe make sure there’s something for me to do while waiting for you guys when you’re ziplining. That’s all.

Nearly everyone I’ve told about this has behaved like I’ve entrusted them with a secret. It’s not a secret, it’s as much a part of me now as the color of my skin or my favorite flavor of ice cream or my height. For most everything, the fact that I have ALS doesn’t mean a goddamned thing. But it’s not going to make a difference to me if you’re aware of it. It’s a part of who I am, and some circumstances need to take it into consideration, but it’s only as big a deal as you choose to make it. Not everyone cares about my favorite kind of cake, but some people might. Not everyone needs to know my sexuality, but it’s a part of me and I’m not ashamed of it. I’m not going to apologize or make excuses for having ALS any more than I’m going to make excuses or apologize for having some of the music on my iPod that I do. (Screw you, guilty pleasure music is still pleasure. I like Michael Jackson as much as Tool. O-Zone gets as much play as Bastille. My-ya-HIIII!) I have tattoos, I have ALS. I chose the former, the latter chose me. But they’re still very much a part of me now and nothing I need to keep secret.

I guess they’re worried on my behalf that people will treat me differently. This is something of a concern, because I’ve already had people deciding for themselves what I am and am not capable of – another post for another time – but I’m more than happy to show people for myself what I can do. This shit is not going to break me, and y’all fuckers need to recognize that. I’m not afraid of people seeing me as suddenly handicapped, I’m afraid of people misinterpreting my physical limitations for disinterest. I’m afraid of not being able to speak freely and openly about what’s happening to me because people feel like this is something that should be buried. I feel like I should be able to ask to be dropped off at the door rather than walking a quarter mile across the very full parking lot without it becoming this huge THING. I want to be able to tell my coworkers WHY I have had a million instances of being late or leaving early from work. I’m not skiving off work, I promise, I’ve just got a bazillion medical appointments.

So, so many medical appointments.

It’s not a secret. I don’t care who knows. It’s nothing I did, nothing I can control, nothing I’m ashamed of, nothing I’m worried about people changing their perception of me. I WANT people to have a different perception of me. The perception of some girl who’s not gonna let this shit beat her. Take a seat, darlings, and watch me work. Feel free to talk amongst yourselves.

And when the new guy shows up late to the party, feel free to tell him what’s going on.

Can We Talk About This?

Avoiding a problem is never useful.

It’s not true that avoiding a problem won’t make it go away. It WILL go away. And you’ll have no control over how it ends, and that will be entirely your fault. If you don’t talk to a loved one about their alcohol addiction, eventually it will kill them, or ruin their life, or continue to make you miserable until you leave. If you avoid thinking about how you can’t pay your rent, they will evict you and then you won’t have to pay rent anymore because you’re homeless. If you avoid dealing with those chronic headaches, it will eventually go away when that aneurysm bursts in your head and you die on the toilet.

If you avoid letting a loved one talk to you about advance directives and worst case scenarios, they’re going to exclude you from those decisions.

I have had the worst time trying to talk to my family throughout this mess. Although I am optimistic by nature, and always believed (errantly, it turns out) that it was going to end up being no big deal, I wanted to have that conversation with the ones I love. Just in case. I would very much have rather had a talk, “I am undergoing tests to find out what the problem is, it may be nothing permanent, but in case it IS, can we talk about what we’re going to do about it?” and then calmly discuss the options as theoreticals and whatifs. It’s easier to imagine making a house wheelchair accessible when you know it isn’t a certainty, because you can look at all of the angles, the practical points, without spiraling into depression because you’re picturing me in that wheelchair already.

I’d much rather tell you when it’s theoretical, than to have to have the conversation be, “I’ve been diagnosed with ALS. This is terminal, and I need to set up an advance directive, and I want to talk to you about that.” Because now you’re freaking out at me – I’ve just told you that I’m going to fucking DIE. And so instead of a theoretical situation, it’s a very real one, and now I have to tiptoe around you flipping the fuck out while I’m trying to tell you to just fucking let me die when I stop breathing on my own. Instead of a calm rational talk, I feel like I have to console you and calm you, when you should be helping me plan the end of my life.


THEN, while they were theoretical and potentials. Instead of attached to a definite prognosis with a finite lifespan, because I wanted to have this conversation WITHOUT you going through your own grief at me while I’m trying to get things squared. I’m trying to tell you how I want to die and when, without having to watch you come to terms with my terminal diagnosis. I needed you to start preparing for that idea THEN, when it was “IT MIGHT HAPPEN AND I WILL NEED YOUR SUPPORT WITHOUT YOU FREAKING OUT ON ME.”

I’d rather have a talk “Hey guys, I might have ALS or something similarly deadly and terrible, so I’d like to talk about what happens if that’s true, but it might not be that at all” and deal with possibilities and still have hope, than “I have ALS, I have maybe 2 years to live. Here’s what I want.” and then have to deal with the wailing and gnashing of teeth and watching them go through the 5 stages of grief all over me.

You must be at least THIS CALM to go on this ride.

Also not helpful? Switching on Christian Mode. It’s another form of denial. “We will pray for you. God will fix this. God is more powerful than anything and he will heal you.”

Okay, but what if He doesn’t? What if, in His infinite wisdom and grace or whatever, He decides I need to die? You don’t fucking know. If all things happen for a reason, then He gave me ALS for a reason and faaaaaaiiiiirly sure it’s not just to fucking cure me of it later. So, pray for me, sure. Yes, please. But also help me plan.

“Our God is powerful and he will fix this” does not figure in to an advance directive.

“Does…she want to be resuscitated?”


“…She’s flat-lining. We kiiiiiiinda need an answer to that question right now. Does she have a DNR form?”


“Well, she’s about to meet Him.”


My mother – and I love her a lot – had her own brand of denial going. When I first started talking about my problems walking around and how I was starting to get medical help for it, she steered the conversation towards ANYTHING else. And when we started to narrow things down, I wasn’t allowed to admit out loud to her that it was possibly ALS:

there are always cons. So they haven’t ruled out ALS yet? What’s wrong with them?????

oh no, it’s still like a 50/50 chance that it IS ALS.
still VERY much on the table

well, it’s NOT.

…And then later in that conversation she told me she was jealous of my medical problem because at least nothing HURT, which is more than she could say for herself.

…I don’t think she’s jealous anymore.

My mom’s not the only one, of course. I’ve been forbidden to die by more people than I can count. “You’re not allowed.” Which, ha ha, yeah it’s cute, but when I’m trying to tell you HEY I AM NOT GOING TO BE AROUND FOR A LONG TIME LIKE WE THOUGHT SO CAN WE THINK ABOUT WHAT NEXT? I need you to have that conversation with me.

The moral of the story is this. It’s an all-purpose statement. When someone you love is going through some serious shit and they are trying to talk to you about it – if you love them, you OWE IT TO THEM TO LET THEM TALK. And you owe it to yourself to participate in that conversation.

Because if you don’t participate in the conversation, you forfeit the right to participate in the decisions.

My Medical Posse

I’ve just done the math and figured out that I have seen 22 different medical professionals over the course of things.

Primary Care Physician – whom I first reported the problem, who ordered some blood work with…

Phlebotomist #1 – and also an x-ray from the…

X-Ray Tech – but the images were normal so I was referred by my PCP to the..

Physiatrist – who asked for an MRI with the…

MRI Tech – who sent test results back to my physiatrist, and because there was an anomaly I was sent to see the….

Orthopedic Surgeon – who decided the anomaly was unrelated and sent me back to my physiatrist who then referred me to….

Neurologist #1 – who did preliminary testing, and then referred me for an EMG with with preliminary bloodwork from the…

Phlebotomist #2 – who did the first round of blood draws – sixteen tests over six vials, but I hadn’t been told I needed to fast for one test so I had to make an appointment to see the…

Nurse – who dealt with my glucose tolerance test (melted otter pops never tasted so gross) and then I was free to see the….

Neurologist #2 – who did the EMG and asked for an upper spine and neck MRI with the….

MRI Tech #2 – who did her job spectacularly and then the results came back to the neurologists but they were baffled so I was referred to…

Neurological Specialist #1 – who was completely baffled and surrendered me to…

Neurological Specialist #2 – who has become my guide and ally through all of this, and she did more EMG pokery and sent me for more blood work with…

Phlebotomist #4 – but those results were normal too so we opted for a very expensive genetic test which required a blood draw from…

Phlebotomist #5 for Athena Diagnostics – and while we waited for that result, I was referred to weekly physical therapy with..

Physical Therapist #1 – and the next week with…

Physical Therapist #2 – and the next week because of terrible weather with…

Physical Therapist #3 – and sometime in there the results came back negative so I was sent off to see the….

Spinal Tap surgeon – who put a fucking NEEDLE IN MY SPINE (tho it seriously wasn’t that bad, House lied to me) and the tests were all normal and meanwhile I had a consultation with…

Physical Therapist #4 – who was called in to do consultation work on me with PT #2, and my doctor referred me to get a biopsy done with…

Surgeon for biopsy – who did the cuttery which led to test results which led to my diagnosis.

..And yesterday I added a technician with a medical prosthetics company to my menagerie.

There will be more, of course – there will eventually be a dietician and a speech therapist and a host of other people. But for now, my posse is 22 strong.