This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.
“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”
“Oh! Hi! How are you?”
“I am good, but zees walkair, are you okay?”
“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”
“I have not haird of zees ALS, what ees eet? Are you going to be ok?”
“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”
“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”
Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.
Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.
The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.
Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.
A new level of awkward.
“I tend to be pretty private,” she told me, as we talked of grief.
“I keep that close to my chest, usually, too,” I agreed.
“But you’re pretty open, usually? You have that blog.”
“I post a lot of things people would consider private and personal, sure. But when I get really sad about my own situation, I tend to shut up and not post for awhile.”
So I haven’t posted for awhile. Not that things haven’t been happening. Things being thought, that I ought to write down. Feelings to document, frustrations to record. Things. But it’s hard to write, when you feel bad. There’s a bullshit self-imposed rule of “if you can’t say anything nice”, when the whole POINT of this was to record the good and bad. The funny among the fucked up, the grace between the grief, the other alliterative things that mean shit happens and sometimes it sucks and it’s all valid and okay.
There’s been a vast lack of energy, both physical and spiritual, lately. I spent the entire weekend in bed. Sleeping or playing video games. Safe to say I’m in a depressive streak, and things are hard right now, but good stuff still happens. I have a lot in my brain. Work is stressful as shit, and that’s its own post, one of many that I feel I owe you, this place, this blog, my future self. One of many. It’s harder to type and that makes me not want to do it. I am tired. I am lazy. I would rather be escaping into virtual realms, the Commonwealth, the biome I call my Minecraft home, Discworld, anywhere but here. I am squandering the time I have left and the ability I have to do things with it, and I can’t bring myself to care, most days.
But I have things to tell you. And I shall. I’m sorry to myself, and to whatever audience here, and to the universe in general for not being a diligent reporter, for not allowing myself permission to post even the bad days, when the bad days aren’t funny. It’s just easier to sleep, instead.
I have things to tell you. And I shall.
There hasn’t been a post in a bit, I know. It’s not really because I don’t have anything to say. I have a lot to say about a lot of things. But not much of it is good. I’m just stalling.
I love you guys.
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.
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?”
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.
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.
There’s not a lot of good in a diagnosis of ALS. Probably there’s NO good in it, except possibly finding out the real character of the people around you. Which does not always amount to a good thing. You learn things you didn’t want to know. Sometimes people show unexpected grace, sometimes they display amazingly cold-hearted selfishness. And sometimes you find out that someone you didn’t pay much attention to is actually an amazing person, and now you don’t really have a lot of time to get to know them properly.
I’m saying it sucks.
I’m facing a lot of challenges. The worst is yet to come, I’m certain; I still have most of my functionality, I have a good job, everyone’s being really supportive. No matter what I may be dealing with right now, it will all pale in comparison to the day I’m finally confined for good in to a chair. When I need help to get dressed. When I can’t eat. When I eventually stop breathing and die.
But for now? The worst part, EASILY the worst part, is having to tell people what’s happening.
I’m a stupidly empathetic person. I don’t know how to simply be sympathetic. “This must suck for you” may come out of my mouth, but my heart is breaking for you. I don’t know how to not do that. I don’t know how to just observe someone’s pain or anger or fear. I’ve never, ever been good at this. I have always reacted more viscerally to other people’s drama than my own. I will let myself be stepped all over, but God help you if you fuck with a friend of mine. There is no such thing as casual observation in my world. All of the stupid sappy videos on the internet – ALL OF THEM – hit me square in the feels. I can’t watch movies that contain a lot of suffering, they freak me out.
I don’t know how to tell someone I’m going to die without it destroying me on their behalf.
It’s really fucking stupid. I mean – it’s happening to ME. This is MY life cut short, but I find myself apologizing profusely when people find out, and I’m very quick to reassure them that I’m okay. Even though I’m not.
I told a coworker today.
He got on the elevator with me this morning, just the two of us, up three floors. This guy and I are not close coworkers, he’s a total asshole, but I kind of respect him for that. He’s blunt. Very straight forward. When I had a problem with another coworker, he was one of my staunchest allies because he calls bullshit when he sees it. I admire his ability to stand up for himself like that.
He wished me a good morning, and asked if I’d ever found a solution to the back/hip/knee thing that has been plaguing me.
“Uh. Yes, actually,” I told him. “It’s uh…ALS. Lou Gehrig’s.”
And I watched the reality hit him and take the light out of his eyes for a split second. He’s probably the first person I’ve told that immediately understood exactly what this meant. “Oh my god, I’m so sorry.”
I smiled at him, “Thank you. I’m doing okay, though. I’m going to keep working as long as I can. I’ve got lots of time.”
He asked what the prognosis was.
“Typically three to five years,” I said, “but my progression is really, really slow. I’ve got time.”
It felt like I was stabbing him. “I’m so sorry.”
And because he was shaken, and because this was terrible news to him, I felt like I had to cheer him up. “I’m doing okay though! I’m happy to have an answer! I’m doing fine!”
He put his mouth in a smile shape.
“…I’m sorry for bumming you out,” I told him quietly.
“NO,” he said quickly, “no no no. You didn’t. I’m sorry this happened.” His mind was elsewhere.
He and I didn’t say much else as we got off the elevators and walked to our cubes. I sat here at my desk awhile, my brain going a million miles an hour, wondering how the hell I could have said that different, how do I frame that so that it’s not ….
…so that it’s not exactly what it is, which is a coworker/friend/family member/acquaintance telling you “I have a terminal disease”.
It is likely only so touchy and raw right now because the diagnosis is still so new to me. I can’t expect someone to blithely accept something like this when *I* haven’t even dealt with it yet. And there’s no real comfort I can supply. “It’s okay” is a lie. It isn’t. And I’m not yet okay with it not being okay.
I’m saying it sucks.
I don’t have the tools in my Cabinet of Social Awkwardness to deal with this properly. If I’m going to be so goddamned empathetic, I feel like I should at least ALSO be intuitive enough to know how to tell people something like this in a way that’s not going to be shitty.
“Do you like baseball?”
“Hey, heard of Stephen Hawking? Turns out we have a lot in common!”
“Good news! It’s NOT cancer!”
A friend with a sense of humor just as fucked up as mine suggested, “Oh, it’s not cancer! And it’s not heavy metal poisoning! They said that I don’t have to worry about either of those; because those take YEARS to kill you!”
…yeah I don’t think that’d go over so well.
For me? I prefer to be told straight up, with a matter of fact idea of what to expect. It’s how I was told of my diagnosis to begin with, and I couldn’t have asked for better. But not everyone can deal with that. This is why I tried to tell people all along that something like this was a possibility – I’d rather have that be mulling around in the back of their head for awhile, and then confirm their worst fear, than tell them “I have ALS, I’ve got a handful of years to live” and have them freak the fuck out all over me. Because THAT is what makes me freak out. Not my own diagnosis, but the way people react to it.
THAT, so far, has been the hardest part.
I’m sure in a year’s time I’ll look back on this and laugh myself sick that THIS is what I was agonizing over.
But for now, I am hurting those I love and I’m powerless to stop it.
And I hate it.
I’m saying it sucks.