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.

Things I Say that I Apparently Only I Think Are Funny, Part One

“You are getting on what might actually be my last nerve.”

“I quite LITERALLY do not have time for this.”

“*insert thing I don’t wanna do* is not on my bucket list, thanks.”

“At least come a zombie apocalypse, I’ll be safe to be around. Even if I turn, what the fuck am I gonna do? Gimp after you? NEERRRRRRRRRRVES…”

I don’t care what you fuckers think. I AM HILARIOUS.

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.

A Walking Pharmacy

I take ten pills, every day. In two weeks, it will be eleven, when the riluzole dosage increases.

An anti-depressant, twice a day. Riluzole. Two prednisone. Vitamin D because I live in Oregon and the sun is a rare thing. Iron because I’m always getting deferred from giving blood for low iron count. Vitamin C to help absorb said iron. Magnesium to help with the cramps. And an all-purpose multivitamin – dinosaur shape. Because fuck yeah, dinosaurs.

There are three other meds I take on an as-needed basis, ativan (which is new), ambien, and flexeril. The flexeril is for when the daily headaches I get become so horrible I just want to sleep. I don’t take that one much at all, mayyyyyybe once every other month. The ambien I’ve mostly been using because of the nighttime cramps I get. No more than twice a week, ever. And then there’s the occasional OTC pain killers for the daily headaches when they get obnoxious and I just want to take the edge off. Which is maybe once every other week, but I make a concerted effort to not take them if I can help it so as not to build a tolerance. If I took one for every headache, I’d fuck up my stomach and have no liver.

So many pills. All of them to deal with one specific aspect of the fuckery that is my body.

And speaking of bodily fuckery: of all of the symptoms of ALS, the cramps bother me the most, so far. It sucks having a hard time walking up stairs, sure, but when I am just trying to sleep and my ankles turn in and my calves craaaaaaaaaaaamp the fuck up, that is RAGE inducing. Sleep is my favorite thing. You do not fuck with my sleep. Sitting on my bed, reading comics with my cats, and a sudden random sneeze (I sneeze more often than anyone I know, and almost always in threes or fives) will cause my sides to cramp up like the worst runners’ stitch ever. A really good morning streeeeetchOWOWOWOW MY FUCKING BICEP WHAT THE HELL. I’ll sit cross legged on the floor and the muscle above and behind my knee suddenly tells me to fuck off and sit some other way. FOR NO REASON. I can just stand up, and then it’s fine when I sit back down. One time I was walking up the stairs and the back of my thigh gave the middle finger so hard I had to sit down on the stairs and wait for it to go away, which was a little embarrassing. Saturday, though, while dyeing my hair, my hands got in on the action and several times I had to stop what I was doing and press my wrists against the counter to try to unfuck my hands.

I’d hit up Dr. Goslin about the cramping in the same email as the anxiety concerns, but we got sidetracked and didn’t get back to addressing it. I sent her another email today. She responded very quickly, because she always does and is amazing, and reminded me that before we tried klonopin for the cramps (VERY BAD WOULD NOT RECOMMEND OMG), she’d mentioned neurontin. ‘It’s a medication used to treat seizures and it decreases the nerve irritability that is causing the cramps. Let me know if you want to try it. It is a very safe medication that is well tolerated except that it can make some people (but not all) feel tired or sleepy.’

And I am not sure I want to try it. And that uncertainty is ENTIRELY because of the ten fucking pills I already take every day. I have discovered that I have a real problem with this. And it’s entirely one of self-image and I need to get over myself. I’m worried about the drugs and supplements interacting, of course, but mostly it’s a problem of image – of seeing myself as Sick with a Capital S because only Sick people take so many damned pills every day, but I’m not really Sick, I just have a bit of a hard time walking so far. I mean, Sick comes later, right? It’s not now. I’m not geriatric, not clinging to a better life through chemistry. I don’t HAVE to take something for the cramps.

And I also don’t HAVE to take something for depression. I can sit around and mope and be unable to perform the simplest things like getting out of bed without a Herculean effort. That’s an option.

I don’t HAVE to take the prednisone. But it might be helping me keep some of my strength, which is helping it be JUST a hard time walking so far.

I don’t HAVE to take the riluzole. But it is extending the time I have, time while it is JUST a hard time walking.

I don’t HAVE to take the iron. I can keep getting deferred from donating much needed blood because my iron count is too low and wasting everyone’s time when I try to volunteer. And have blood like water.

I don’t HAVE to take the vitamin C. I can let the iron twist up my guts.

I don’t HAVE to take the magnesium, I can find out for myself how much worse the cramps are without it.

I actually don’t HAVE to take the multivitamin, I suppose. Or the vitamin D. I’m not sure those actually ARE doing anything, but they’re certainly not harming me and the least of my concerns. And the dinosaurs are tasty like candy.

I don’t HAVE to be a walking pharmacy and take eleven pills a day to maintain some semblance of normalcy. I am free to live without any of these things and deal with the effects of their absence.

But I also don’t HAVE to see it like that, and realize that I have the power to make my life easier in a very simple way, by just getting over myself and swallowing a couple of fucking pills.

Cosmically Unfair

Terminal diagnoses should come with a complimentary administrative assistant and a lawyer.

It’s not fair that you have to suddenly deal with the whole “you’re going to die, and here’s how” idea, but there’s SO MUCH PAPERWORK. Bills to pay. Forms to file. People to inform. Insurance to adjust. Huge, heavy decisions to make and then notifying all the people involved. There’s so much BUSINESS to dying, or preparing to. Shit that really, everyone should be cognizant of anyway, but you never really bother to think about it properly until it’s too late, and then your relatives have to deal with it when you’re dead. But because I have warning, and because I want to make this as easy as possible for those I love, I’m trying to take care of as much of this as I can. And quickly, so I can put it aside and not have to think about the end of my life every minute of every day anymore and just get back to living while I can.

..And a kitten. Terminal diagnoses should come with a free kitten. Yeah.

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.


I have an awesome bed. It’s a heavy black wooden frame, vaguely Asian looking, beautiful, and you could lose yourself in it. My boyfriend and I bought it together, had it custom made for us, and it was a California King sized futon mattress. You could sleep three in it; he was an active sleeper, so the expanse of it allowed for him to not bother me with activity when we slept. The two of us had our own universe sized bed to ourselves and three cats. We eventually got tired of the futon and got a pillowtop mattress instead. Being a pillowtop mattress on a futon frame made the thing come up to my waist, I had to hop up a bit to get in to it. The relationship ended, I kept the bed. It was the one thing I insisted on, though he gracefully capitulated without a fight over it.

I really fucking love this bed.

I had to make some small concessions for my elderly cat, when he became unable to climb in; I put a little set of stairs at the foot, up to some storage bins covered in a blanket. The bins became a bench for me to sit at and put my boots on in the morning. But lately it was becoming a bit of a chore for me to climb in, anymore. I found that I was bracing myself against the wall next to the bed and kind of pushing myself in, or vaulting up.

So today, I asked my handyman brother to cut the bed legs down. He took about seven inches off. It was a hell of an effort, because I had to break it all down and the headboard and footboard are each one solid wood piece, the headboard weighs a ton. I disassembled it, he took the pieces outside, and cut all but an inch off of the legs.

OH MY GOD so much easier to get in to bed now. I can just sit down on the bed and not have to climb up in to it. I’m so grateful to him for having done this for me today. The cats are a bit pissed off, because they can’t go under the bed anymore, there’s only an inch clearance. Which is AWESOME for me, because that means they can’t run under there to puke anymore. It was…pretty gross under there after I’d disassembled it. Took me the better part of an hour to clean my floor.

I’m feeling a little maudlin about the whole thing, if I’m being quite honest. This is the first concession I’ve had to make for myself. The first home arrangement, the first furniture change to allow for easier access with my diminished ability. And it sucks that it had to happen to my glorious bed. Someday I’ll need help getting in and out of this thing, when my arms no longer have the strength to lift me up. That day is far away, but the day I’ve first needed to make a change is today. The bins at the end of the bed, originally for convenience, will be mandatory someday too. This is the first in a long line of things I’ll have to change because I just don’t have the strength to do it another way anymore.

The sadness I feel about having to butcher a beautiful piece of furniture, though, is diminished by my joy at it being much easier for me to get IN to the fucking thing.

Liste du Bucquette

I have a complicated relationship with the idea of a bucket list.

Okay, so, first? The name ‘bucket list’ kind of bugs me. I can’t really pinpoint why. It feels a little disrespectful, I think, but that doesn’t make sense as I am PERFECTLY willing to make all kinds of jokes about my condition and I’m notorious for not taking it as seriously as some people might like. Maybe it just feels a bit…man, I don’t know. Whatever.

Everyone seems to assume that the moment you are told you’re terminal, the first thing you do (after you cry a lot) is run out and make a list of things you want to do before that happens and start working to check things off. I’ve had a LOT of questions about the sort of things on my bucket list. But here’s the thing – I DID NOT HAVE ONE. I did not immediately start figuring out what life experiences I wanted to have before I died, I was FAR too busy figuring out how I’m going to LIVE. I have a lot of plans to make, and I’m still dealing with that whole “my life is suddenly very finite” idea. Figuring out grand adventures was honestly the absolute last thing on my mind. I had research to do, and people to tell, and disability to work on, and medical appointments to go to, and a house full of chaos besides. I have no time at work to think about these things. The idea of setting aside some time specifically to think about “what would I like to do before I die” is bizarre to me, and I’m not the sort of person who thinks about that as a matter of course. A lot of people have some vague idea, or have that one thing they want to accomplish – my main babe Danielle wants to see Australia, badly. I didn’t ever really have things like that. There’s been a lot of “this would be really cool to see” but there’s never been a primal PULL to accomplish anything before I die. Nothing I need to have done so I can consider mine a life well-lived.

The idea of a bucket list has brought up another major point: I really suck at accepting nice things. Whether it’s a compliment or an extravagant gift, I am easily overwhelmed and hesitant to accept. It’s likely a combination of growing up extraordinarily poor and having crushingly low self-esteem for most of my life (and still, to a large extent). There’s a large dose of “I don’t feel like I deserve this”. There’s a large part of “there are other people who definitely deserve this more than I do.” So when people have asked to help make some bucket list items come true, I’m like a deer in headlights. One friend has offered to fly me to Maryland to see her and then daytrip to New York for an honest to God Broadway show and fancy dinner. Another was asking how I’d feel about an international trip, because she is totally willing to take me on one, do I have a passport? And I’m overwhelmed. Because that’s a lot of money. A lot. More than I would probably ever justify spending on myself, even if I had it. So I’m very tempted – it is in my NATURE – to politely decline.

My friends know me very well though, and I was preemptively asked to consider their position. They have a friend who is dying, they want to make one good memory with her before that happens. And they have the means to make it an extravagant memory. So that, when she dies, they have no regrets over time lost and opportunities wasted. Do I really want to deny them that? Won’t I consider how they feel, and realize this is as much about them as it is about me?

…And I can’t fault that. If it were anyone but me, I’d totally be on board, I get it. But being on the receiving end of that feels strange.

I certainly don’t feel like I deserve magical golden presents. And though I’d love to see Italy and Japan and New York, it’s not likely that I’d travel there, even if I had the rest of my natural lifespan. So why do I suddenly get the option to do these things just because I’m going to die sooner? Why does ALS equal a ticket to New York when there wasn’t going to be a ticket to New York in my future otherwise? How does THAT work? Consolation prize? SORRY ABOUT THE SLOW DEATH, HAVE SOME PASTA IN ITALY.

There’s also a battle within me of pragmatism. Part of me wants grand adventures, yes, but there’s a large part of me that just kinda…wants to continue to live life normally. Take a vacation occasionally, sure. But nothing so extravagant. And otherwise stay the course. Go to work. Be as normal as possible for as long as possible. Maybe that’s a form of denial, but ALS has already completely disrupted my life and I feel like I need to mitigate that disruption. So, suddenly becoming a jetsetter is weird for that reason, too.

So no, I didn’t really have a bucket list. I was given that as a homework assignment Wednesday, and whaddyaknow, there’s a website for it. So I made one, and I’m continuing to add to it. I was told specifically to only include fun things. “sell the house” and “work out disability benefits” do not go on that list; there’s a separate ‘shit I gotta get done’ list for that stuff. This was to be a list of everything I can think of that would be awesome to see/do/make/have before shuffling off this mortal coil, no matter how unlikely. So, here it is so far:

I’ll keep adding to it as I think of things. It’s a work in progress; it’s hard to think about this for too long without spiraling down, for one, and there’s so so so much cool stuff to do, how do I figure out what should be on this list? The next step will be to figure out what’s actually feasible, and then sort that smaller list in order of physical demand so I can do that shit first, before it becomes too problematic. I was told I should make that list public, so that friends of mine could sign up to be buddies for adventures – like, “You want to go to Yellowstone? Awesome! I do, too! I’ll go with you and that way it’s definitely going to happen!” And they can choose the events that would be most meaningful to them to participate in. Not everyone gives a shit about being there when I get a tattoo, but for other people that might be a meaningful moment to share with me. Maybe one of my friends has also always wanted to learn how to pin insects.

Annnnnnnnnd then there’s the idea that’s been floated by me by a few friends of putting up some kind of donation thing, so that friends can outright sponsor a bucket list item, or donate towards one. And that also feels weird. Again, there’s the “I’m not worthy” part, and there’s a chunk of “your money could be spent making YOUR life more awesome, you should do that” or “ALS research needs the money more than I need a new tattoo”. But it’s not about ALS research, or potential vacations, or any of that. It’s about the crushing sense of helplessness they feel, and this is one thing they can do. Something solid. Something concrete. Something that makes their friend’s life a little brighter for as long as she continues to have it.

Mehhhhhhhhhhhhhh if I keep talking maybe I’ll convince myself. I’m still not buying it. I’m hardwired not to. I’m trying to be more gracious about accepting help when I need it. I’m trying to teach myself to see that accepting these happy things will make me better at accepting help for the not happy things. If I can get over myself and accept a trip to NYC, I can get over myself and accept a hand taking a shower later.

But overall, I am grateful. So, so grateful, that I have friends who want to do these things for me. I’m grateful to the universe that they’re in a position to be able to. They’re lovely people, and I’m glad they’re doing well. I’m grateful that these people were put in my reality and that they remained in my orbit. And I’m overwhelmed with the love and support everyone’s shown me in their enthusiasm to make this list happen.

I know the best, most awesome, most generous, most loving people. And I adore them. I am a lucky girl.

We can make her better. Stronger. Faster.

Ottobocks: more than meets the eyes!
New AFOs for Vashti!

I got my braces today! These AFOs (ankle/foot orthotics) make walking SO SO SO much easier. All the fashionable Wicked Witches of the East are wearing them this year. I’m going to make leather straps for them, though, because the crunchy crunch of the Velcro is I walk is driving me nuts.