Calling Cards of AWESOME.

Speaking of cards!! You may remember a conversation I had with my dear friend Megan about playing the “I’m dying” card, and she decided to needed to make me actual cards with various demands.



I can play this card whenever I want!
I can play this card whenever I want!

She and her fantastic husband Colin actually made me the cards. They are a physical thing. They are sparkly embossed and amazing. They ALSO gave me the Jack Skellington and Oogie Boogie figurines you see (and I heart them SO HARD) and the black heart decoration which does not at ALL show up in this picture. But it is soft and awesome.

Megan is one of the most thoughtful people I know. She once made me a little box of lip cutouts that she’d kissed with lipstick on, for when I need smooches and she is not there to give them. I can’t tell you how amazing she is. Her husband Colin, who I’ve known just as long, is also amazing and full of love. He is the perfect partner in crime for her and I love them more than I can ever possibly tell you.

And THIS, THIS is how I survive with a smile. I am orbited by planets of awesome, and the pull of their gravity keeps me from collapsing in on myself.

I love these cards and I am looking forward to the looks on people’s faces when I actually use them. I love the people who made them. I love the people who gave suggestions for them. I love that I have such amazing people in my life. I love that my diagnosis has shown me exactly how loved I am, and how completely I am surrounded by the brightest and best people in the universe.

I love my life, ALS and all.

Madam, My Card.

OK kids, quick diversion. This is something I wanted to do for a little while now and I finally got my act together to make it happen.


I have calling cards now! I’ve had a lot of occasions where I’m talking to someone about my blog, and it’s not QUITE got enough Google Juice to find by ALSFTS, so I wanted something proper to hand over. “Yeah, I actually wrote all about how I came to the diagnosis and what my symptoms are. It’s at my blog which is..oh hell. Here’s the info.” And then hand over the card like a pro.

Of course I wanted a cheap option, and there are all kinds of sites out there that do the “250 cards! Free!” and then charge you for everything. “Oh, did you want INK on those? Well that’s $5. Gloss? That’s $5. Shipping? Fifteen dollars.” Pffffft. I wound up at Printastic because I found they had the best templates and I’m NOT about to design my own shizz yet, I just wanted something quick. They had the usual free 250 cards thing, but only like two bucks for gloss and then I think 7 for shipping, so it’s not bad at all. I didn’t expect much, something better than a Post-It.

But they actually look really COOL (even if I do say so myself!) and are decent quality, not flimsy or anything. So hooray! Here’s what they look like!

Networking! With Swears!
Madam, my card.

Now if you will excuse me, I’m going to go hand these things out like a BOSS.

This is What A Lucky Girl Looks Like


Longer post to come. But I am so, so grateful to everyone that came out to show me love and support today. So grateful to those that could not but wanted to. So grateful to everyone everywhere who ever gave a shit about another human being. I am so glad to be alive and in such excellent company.

I am so fucking lucky.

Spin on

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.

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.


So I opened the floor to questions, and I got a couple. I hope you guys know you can always ask me questions and I’ll try to answer them as honestly as I can. The usual disclaimers apply – I speak for myself, not for everyone with ALS, your mileage may vary. Hit me up in comments (anonymously if you like) if you can think of anything else you’d like answers to.

Q. How does progression work? Random parts or a clear path with variable timeframe?

Everyone’s experience with ALS is different. Though according to Dr. Goslin, the rate of progression tends to be steady. If it’s a fast progression now, you can expect a rapid decline until the end. If it’s slow and steady (as mine is) it will remain that way. ALS doesn’t go in fits and starts, apparently – it’s a constant rate. I’m losing the ability to walk, but it’s not as though one day I’m going to wake up and my legs just don’t work. They’re going to fizzle out slowly.

Some people start with the speaking/swallowing difficulties, some people’s starts in the hands, some peoples’ start in the hands and feet at the same time. Some people die within months of learning something’s wrong, some people go for years before being diagnosed because they just figure they’re clumsy or getting old. This is the main reason I can’t speak for everyone with ALS. Our feelings and how we deal with the disease are incredibly varied, but nothing so varied as how the disease manifests in the first place. It’s entirely unpredictable except in how the story ends.

Q. Does it hurt? Not trying to do things but just in general?

The disease itself doesn’t hurt at all. That’s one of the things I was actually lamenting during my diagnosis – nothing hurt, so I couldn’t point to any one thing as the problem. The only pain that ever came as a result of ALS were the occasional muscle cramps in my legs, but they’re rare now that I’m taking neurontin to calm the twitches. Kneeling now hurts because there’s no longer that cushion of muscle protecting me – so my bones are pretty much pinching my skin against the floor. ow. But no, nothing hurts as a direct result of the disease. I don’t feel the neurons burning out. My only clue that it’s happening are the random fasciculations and the progressing weakness.

Q. I know you’re Christian – how does that affect your thoughts? Does it give you something to hold onto or is your faith shaken?

H’oboy. Well. I’ve always considered myself Christian in that I believe in the teachings of Christ. It boils down to – Be Kind. Take care of those who can’t take care of themselves. Believe that you, too, will be cared for. Every major religion has some variant of the Golden Rule. I was raised hardcore Evangelical Christian, and I still hold a lot of the same faith, but I don’t believe in the Bible as a literal record of events, and ..yeah. It’s complicated, and changing. I believe in God, but I don’t believe He’s necessarily involved in the minutiae of our lives. I really don’t believe He cares who we’re having sex with. I believe it is in us to be kind and rise above our animal nature, and that brings us closer to Christ, closer to being like God.

My faith (or whatever it is you want to call this) is unshaken, because I don’t think God was necessarily involved any more than God is involved in the changing of the leaves in Fall. I don’t believe that God will fix this except through the minds of brilliant scientists who will figure out a cure. I think things happen for a reason, but sometimes that reason is that you’re stupid and have made terrible life choices. And sometimes that reason is that your DNA is twisted and you were doomed from the get-go. I have ALS for a reason, and that reason is ..whatever it is that causes ALS. I don’t think I was given this disease as a challenge of faith or a chance to show grace, I think it just happened because sometimes people get ALS. We’ll figure out why some day. I’m not going to wake up magically free of ALS, and that’s okay. It’s not God’s fault. It’s not anyone’s. It’s just how the universe manifests itself.

Though I admit, I WAS cursing the universe a bit when I got shingles on top of all of this. Just a little. Cause…dang, man. Really?

Q. Are there really neat treatments upcoming that hold out some hope?

Stem cell research is going to be the key. If we fix this at all, it’s going to be through stem cell research. It’s what shows the most promise. Recent tests have allowed some early-stage ALS patients to recover a little bit of strength. And while some of that is controversial (spoiler alert: not all stem cell research involves embryos), I also believe that if the naysayers were diagnosed with ALS tomorrow, they’d probably be willing to inject fetuses straight into their spinal column if they thought it would keep them alive.

I don’t think we’ll find a cure in my lifetime – no, that’s not entirely true. We might find a cure in my lifetime, but it will never get through the FDA rigmarole in time to reach me before I die. My only hope is through participating in clinical trials, which will carry some risk, but even if that kills me, it provides a data point. Which is precious. And I really do believe we’ll figure this out. Some day ALS won’t be a death sentence, but I don’t think there’s any chance of that happening with me. And that’s okay. We’re working on it, it’s getting attention.

Q. What are your happy thoughts?

I am loved. Seriously. I am so fucking loved. It’s amazing. I would NEVER have thought in my whole life that I had this many people who cared so deeply for me. Any time this stuff gets to me, I can make myself calm down with the knowledge that there are people who would do anything to help me.

It’s a powerful thing, to know you’re not alone. And I know there are going to be days when that knowledge saves my life.

Falling with Grace

I went out to get the mail yesterday after work, and waited for traffic to cross the street. My street’s the only one in the neighborhood that goes all the way through from one major road to another, so it’s busy. Coast is clear, I step off the curb, but here comes a truck. He’s waiting for me, how nice! But the other side is not clear, and it looks like there’s a few cars, so I don’t want the truck to wait for no reason. I think that I will signal to the truck driver that I intend to wait for traffic by stepping back on to the curb.

Except that doesn’t go so well.

Instead, I don’t have the strength in my legs to make that step back, and so I wind up on my ass on the curb in some very crunchy grass. My neighbors don’t water their lawn any more than I do. I’m not hurt at all, just embarrassed, and I laugh nervously, shake my head, and flash the truck driver a thumbs up. Like, hooray for that! ha ha ha I just fell that’s so funny. But I’m okay! He laughs, and drives away.

I wait for traffic to clear to try to stand up. It takes me a try or two.

And I’m not going to lie, when I got back in to the house, I cried. And felt an irrational anger at the truck driver, even though I know if he had understood why I just fell, he wouldn’t think it was funny at all. And I was laughing, too, and he has no idea that it’s a nervous habit I’ve had all my life. When I’m angry, I laugh, and then I cry. When I’m hurt, I laugh. When I’m being insulted, I smile. Until I’m alone. And then I cry. But still I’m a little angry that he didn’t understand it wasn’t my fault I fell. It wasn’t clumsiness. It wasn’t. fucking. funny.

This is the fourth fall. It’s not the worst. The worst one, thankfully, didn’t have any witnesses and was just scraped up palms. It was the day of my diagnosis and my mind was elsewhere so it’s hardly surprising I didn’t quite make the curb. They’ve all been the result of trying to step up and not quite making it, and then not having the strength to correct my balance. So I just kind of sit down. Or kneel. I’ve never been actually hurt, they’re gentle falls.

But they’re a precursor of things to come. A sign that things are going to get worse. Hateful little reminders that my time on my own two feet is limited. The fall itself is frustrating, of course, and humiliating, but they echo of disability and impending loss. There’s no outward injury, just a cringing inside and fear and future loss.

There will be more. Worse ones, too, I wager. And in public, I’ll fall with grace and good humor, and joke about it, and feel like dying just a little, and never let on that I’m not actually okay.

“Nothing bruised but my ego,” I joke. But that bruise hurts like hell.

Kiss Me, I’m Dying

One of my very favorite, most used bits of gallows humor is the idea that the world somehow owes me something because of my disease. I call this the “Fuck It, I’m Dying” defense.

…Of course I don’t actually BELIEVE that, that would be stupid. Even though I know there are some terminal patients who do think that way, it makes absolutely no sense and that’s a ridiculous way to think. I present you my very very favorite poem ever:

A Man Said to the Universe

A man said to the universe:
“Sir, I exist!”
“However,” replied the universe,
“The fact has not created in me
A sense of obligation.”

POW. The world don’t owe you JACK SHIT, my friend, if you’re dying today or tomorrow or a hundred years from now. But it’s funny to think so.

Any time I think I might get in a little trouble at work, like I forgot to submit my monthly status report (OH MY GOD I TOTALLY FORGOT TO SUBMIT MY MONTHLY STATUS REPORT! SHIT!) my friend and coworker asks, “What are they going to do, fire a dying woman?” When we don’t choose where I wanted to go to eat, “Demand it anyway. You’re dying. OVERRULED. We’re gonna go get Mexican, bitches.”

I was talking tonight with my dearest Megan (who is awesome and you should BE so lucky to know her) about traveling for business, and sourpuss coworkers who just want to go to the hotel after work and not explore the city. Especially if you’re in another country! COME ON MAN, LET’S GO HAVE AN ADVENTURE. Megan agreed, “Yay, adventure! Demand adventure. Play the I’M DYING YOU HAVE TO TAKE ME ON AN ADVENTURE card.” I told her, “I LOVE that card!”

And then she said, “Okay, now I want to make you cards. Two-sided, business card, or maybe a little bigger, like an old fashioned calling card…One side: I’M DYING. Other side: miscellaneous demands.”



I’m sure you all can help me think of other good ones. Let’s hear them.

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.

Difficulty Level: Beginner

There are things that are more difficult to do now. This is hardly a surprise, it’s a lovely happenstance when your motor neurons burn themselves out and your muscles atrophy. But there are some things it never would have occurred to me would be harder.

Like putting my shoes on. I have no strength in my toes at all, so when I put shoes on, they just kinda curl under when I shove them in. I can’t flex them so set it right, so I have to push on the tops and sides of my shoes once they’re on to get my toes to try to uncurl so I’m not walking on them.

Scrubbing floors is harder, not necessarily because my energy pool is lower, but because I have no muscles in my lower legs anymore so kneeling on the wooden floors hurts. There’s no real padding, so it’s like I’m knocking my bones right on the wood. And then once I’m done with that section of floor, getting up to shift a few feet away is hard because I don’t have the strength to push myself up from a squat, so I crawl on my knees, knock knock knock, and ow. Sucks.

Same for standing a long time. It’s not that my legs don’t have the strength to hold me up as much as it’s the lack of muscles in my feet so I have no padding to protect me. It’s like standing on concrete, even in spongy shoes. After about an hour or so, it’s not that I’m muscle fatigued from walking around, I have to stop because my freakin’ FEET hurt.

I’m also finding it hard to stop short, when walking. My toes have no strength to balance me out. So when I walk up to the elevators, I have to make a lot of little cha-cha steps when I stop in order to not fall over. It’s easier now with the cane, but it’s still weird.

Maneuvering in the hallways at Intel has always been hard. There are a TON of very…..self-involved engineers here. There are the ones looking at their phones walking on a direct collision course with you. There are the ones gathering in clusters right around the corner so you crash into them when you turn. There are the groups of them walking three people across down the halls, leaving you LITERALLY no way to walk around them, so you wind up just standing there, waiting for them to either physically crash into you, or notice you and pull the cluster a little tighter to squeeze by you as you’re hugging the wall.

Walking through work now is like dancing in a minefield. I have to be vigilant at all times because if I get bumped into, I’m going down. I can’t quickly sidestep someone turning the corner too sharply. In the cafe, when someone stops short, I can’t avoid crashing in to them. So I advance cautiously, looking for potential problems, and keep a two person length in front of me at all times. I have become the granny driver of walking in the cafe.

I didn’t foresee any of this. When they tell you that you’re going to lose strength in your legs, you think “walking is going to be harder, going up stairs will be nearly impossible.” You don’t think “I can’t squat down to tie my shoes ever again”. Or any of the things above. It’s a bizarre safari of self discovery, and it’s not even upsetting, not really, not OH WHY ME I CAN’T KNEEL ON THE FLOORS TO SCRUB UP CAT PUKE ANYMORE”, it’s just been, “Huh. Okay. So that doesn’t work anymore.” and working out what to do instead.

Milk crates. Milk crates are what you do instead. Milk crates are my friend. You just park your butt on it, and lean over for scrubbing the floor, or sifting the litterbox, or tying your boots. Milk crates are awesome. They used to be book shelves, then moving boxes, now they’re butt support. Universal problem solvers.

Eventually I won’t have to worry about any of this stuff. I’ll be in a chair, and I’ll just run over the engineers who get in my way. There won’t be a balancing act when stopping short, just brakes. I’ll be sitting when doing the cooking. And the floors…well, someone else will probably have to deal with that. Problem solved for ME, either way. But it’s interesting, finding out these little things that no longer work.