Wakey Wakey

A friend of mine, the one recently diagnosed stage 4, had a Celebration of Life party a couple of weeks ago. It was like a wake, only he was there.

I think that’s the coolest thing ever.

Wakes are always awesome in theory, you don’t mope and mourn, you throw a party! And talk about the good times! Yay! But there’s always a little regret; “Why didn’t I tell them this while they were alive”. And the cheer is forced, a bit. WE ARE TOTALLY HAVING A GOOD TIME BECAUSE THAT IS WHAT HE WANTED EVEN THOUGH I AM LEGIT SAD AND THIS IS SHITTY AND LOOKING AT ALL OF YOU TRYING TO KEEP YOUR SHIT TOGETHER IS MAKING IT WORSE. Or the “HOW CAN YOU BE HAPPY WHEN OUR LOVED ONE IS DEAD” crowd that just sit in the corner and sigh. They’re miserable at other parties, too. But the idea of a wake is excellent. Yes. Talk about the good times. Talk about how this person changed your life. Talk about the stupid way they used to sit in a chair and lean allllll the way back until you swore they would fall but they never did. Until that one time. And remember that laugh? Oh god. We got in SO MUCH TROUBLE that night. And allow yourself to miss them, and be sad, and be okay with it, but celebrate who they were, and be thankful that your paths crossed for awhile.

The idea is rad. So why don’t we do this while people are still alive? Someone is diagnosed with something awful, someone is going through a really shitty experience, something happens that is changing their life forever in a bad way, then help it all by throwing a party for the people that love them, invite them all to come and drink and talk about how amazing this person is.

Chad’s party was a little weird at first, like you’d expect. It’s a wake? But he’s here? Um. Wow. Okay. So we just…um. Wow, I don’t know a lot of these people. But we played a game, and they did a really awesome thing with the game to remember us all by, and it was fun. We got to talk, we got to eat, and it was a really, really fantastic excuse to get people to go out of their way for an evening to come and say hello. And for Chad it was probably awesome to have all the visits done in one shot – I know for me, anyway, coordinating visits with people is tiring, and the visits are exhausting, but you really, really love them so it’s worth it. But it would be fantastic to just show up somewhere for a couple hours and have people able to come over to you instead of scheduling ten million things and cancel some of them at the last minute because there’s no spoons or shit happened, or whatever.

So yes. Do that for your people. Divorce, diagnosis, moving far away, whatever. Uplift and encourage. WHILE THEY ARE AROUND TO APPRECIATE IT. It’s better to say this stuff to them while they’re still alive, still present, still able to have their entire day made by a kind word.

When I was diagnosed, and this amazing community sprang up around me, I listened and read while my friends told each other about how they came to meet me, how important I was, how awesome I am. As expected? Total ego boost. But I learned a lot of things I don’t think I’d ever have known. A friend of mine credited me with getting her into our social scene, because I was the only one of the CreepyKids who came over to say hello, so she was encouraged that we all didn’t hate her and it was okay for her to be among us. Which is weird to me, because I didn’t consider myself really IN that crowd, and it would never have occurred to me that I might ever be a gatekeeper to such a thing. But she said I was, and I did, and she never forgot. And I would never have known that.

I don’t know that I’ll ever have such a party, but of course there will be a wake sort of thing. And while talking to Danielle this morning, we determined there’s going to be party favor bags. With a pair of my socks, some stickers, a tiny Japanese thing, and a container of sprinkles. All things I have too many of. All things I adore. All little pieces of me, who I am, and what I like. I think that’s an awesome idea. Once upon a time I made a Happy Box Exchange, and I made little boxes full of things that made me happy. Music, stickers, little toys, sprinkles, candy, delicious scents. Things like that. I didn’t get all of the participants to respond back in kind, but the ones that did, came in FORCE. A baking care package. Another box in kind of all kinds of music and stickers and things. It was a really uplifting experience. Happy surprises.

So imagine that, only instead of stickers and candy, it’s memories and feelings. That would be the best thing ever.

You should do it.

Assisting the Assistance

One of the most common questions I get asked is some variant of “what can I do for you?” or “how can I help?” or “what do you need?” It’s a common response to finding out someone is in distress, when the situation is too large to process at once. It’s a natural instinct, to want to exert some kind of control over a situation that makes you powerless. Okay, it sucks that you have a terminal disease, what tiny little piece can I work at to make it suck a little less? There must be SOMETHING. Anything.

You know the absolute best thing you can do, for anyone going through A Big Deal?

Take care of their caregiver.

The Big Deal sucks for the person who is center circle, no question. But it ALSO sucks for the people around them – as Dr. Doug McClure told me, “You’ll find it’s not that YOU have been diagnosed, WE have been diagnosed.” The caregiver is responsible for keeping everything together when the diagnosed no longer can. They do everything from making/getting to doctor visits to cleaning house to coordinating visits to making sure they’re wearing clean socks. Lifting spirits and lifting patients. Finding hope and finding the damn car keys.

Dying sucks, and there’s a lot of planning and work and Massive Introspective Soul Searching ™ involved, but comparatively? My job is easy. I just gotta die. Whether I work at it or not, the end for me is the same. I just have to let it happen. Danielle, though, she has to plan and prep and care and organize and clean and all the things I can’t, from here on out. It’s a really big deal in its own right. Later on in our joyful journey of doom, if I just let things happen without working at it, I’m pretty much where I was either way. If she lets things happen without working at it? I won’t eat. She worries about keeping my house clean, making sure I’m not expending too much energy, researches places to live, and is pretty much an unpaid personal assistant.

…The woman cleaned up cat poop this weekend to spare me having to spend a spoon to do so. CAT POOP. THAT IS LOVE, PEOPLE. She’s signed on to scoop cat boxes for NOT EVEN HER CAT.

It’s a tough job but it doesn’t have to be thankless. I’ve done thankless jobs, and they’re soul-draining. I’ve done really shitty jobs happily, because I was appreciated for it. It’s amazing how far a thank you goes. An honest, sincere word of thanks. A “hey, I know this thing took up all your weekends for a month and I’m sorry I can’t pay you for it, but let me take you to lunch at least”. Taking a second out of your life to say “I appreciate the hell out of what you’re doing.”

I’ve said it before: it is fucking AMAZING how helpful it is, to simply have someone just acknowledge what you’re doing is hard.

So if you want to do something for me? Do something for Danielle. Buy her a freakin’ Jamba Juice or something. Ask her how you can help share her burden. She needs people to care for her. Someone to give her a break sometimes. And mostly? People to recognize that what she is doing is HARD. She is shifting her entire life to be there for me. People need to appreciate and acknowledge that sacrifice. I appreciate the ever loving SHIT out of her, and it will be extremely helpful to me if others do, too.

Updates Needed! ZoMG

Hello babies! I owe you storytime for a LOT of things. I will get to them this weekend! Probably!

I need to tell you about:

The walk!

Passport Drama!

Neuro Checkup!

New Meds!

Elder Care Attorney Appointment!

Probably Some Other Stuff!

My job has been absolutely CRAY CRAY so I haven’t even had time at lunch to update this. Bleh! I am still here though! And I love you!

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.

http://www.spinnyverse.com/index.php?id=87

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.

Yep….

..Still liking the Ice Bucket Challenge videos, haters.

Suck it.

I’ve been SERIOUSLY overwhelmed at the amount of friends of mine who’ve done one and given me a shout-out. And most of them mention the Walk team.

OH MY GOD THE WALK TEAM.

SO GUYS. GUYS.

Okay. When I signed up for the Walk to Defeat ALS, I didn’t expect much, really. I thought a few friends of mine would join me, maybe kick in a few bucks. When you set up your account, they suggest you shoot for a target of $210. I knocked that down to $100, figuring it would be far more realistic. And instead of the automatic team goal of $2k, I knocked it down to 1. This was a lofty, pie-in-the-sky ideal though, I never expected to actually reach it. I’d have been happy with reaching $300 across my whole team of maybe 8 individuals.

I have 26 people in my posse. And we’ve raised $5 short of *three thousand freakin’ dollars*.

ZOMG.

As I said in the last post, there are dark days. But they are so few and far between, and a lot – A LOT – of that is because of these things. I am CONSTANTLY shown that there are people who love me, people who are willing to help, people who want to support me somehow. It’s amazing, and I am humbled, and so so fucking grateful. More than I could POSSIBLY hope to convey.

I have a posse. And they have my back.

And so I can live on.

Happy.

Let’s Get Clinical! Clinical!

Clinic.

When I was a kid, and my parents spoke of taking me to the clinic for one reason or another, my child brain heard “clink” instead. I had once heard of being in jail being called “thrown in the clink”, so my kidbrain thought my parents were taking me to jail, just because I didn’t feel good.

The concept of Clinic Day can sound a little bit like jail too. Five hours and a host of doctors and experts cycling through in a dizzying whirlwind. I attended my first one yesterday, which was primarily to get me introduced to the people who will be working with me to keep me alive and functioning as long as possible. I was warned it was long, it was overwhelming. My appointment was scheduled from 12 noon to 5PM. The long haul.

I showed up with Danielle and my older brother Gecko. They’ll be the primary caretakers of my health and my (so-called) estate, so it was important for them to know what to expect in the days to come. The practical upshot of this was that we were our own peanut gallery and amused ourselves through the day with HIGHLY inappropriate jokes. Which would have been even worse, only Lance from ALSA asked if I’d mind someone sitting in on my clinic – she’s just started her job with ALSA and wanted to know what the clinic experience was like. I said okay, since I knew there was nothing really major happening with me, and we tried our best to rein in the Your Mom jokes and gallows humor. Which is the best humor.

We didn’t always succeed, but she was a good sport.

The first appointment was with an occupational therapist and a physical therapist. Tag team! The OT was there to judge my hand strength and to see what kinds of things I can be doing differently to conserve my energy. She didn’t like that I carry my laundry up the stairs, and suggested a duffel bag that I can fill and kick downstairs, and then haul up by a rope or something once I’ve walked up the stairs. She also suggested a rolling cart for my kitchen, sitting down whenever I can, that sort of thing. She measured my grip strength with this weird metal handle device, and amused me greatly by shouting encouragement while I squeezed. “GO! GO! MORE! DO IT!” and I thought “People would probably pay a lot of money to have an Asian woman yelling at them.” And then I realized, I *am* paying her. My grip strength and arm strength were 5s all around, I’m good. My favorite suggestion of hers by FAR, though, was that I get someone else to come over and clean the litter box and hairballs so I don’t have to be on the floor. I am actually worried about my “I can do it” being overridden by my innately LAZYFACE nature – I mean, hell YEAH I’d rather not clean the litter box, but I don’t want to make someone I love have to make a special trip out to my place to scoop the freakin’ box for me. That’s dumb.

The PT was there for walking ability – I’d met her before, when I was doing physical therapy regularly before Godzilla Disease had its other name, my usual therapist had called in because it was snowing, so she filled in. She watched me walk down the hall after asking if I had any concerns. I told her I (and other people) have noticed that I lean on walls whenever I can while I walk. I’d kind of thought to myself lately that a cane would be kind of awesome to have around, something else to lean on. We tried me with a walker, which was really awkward. It’s instinctive to lean on it with some weight, but you’re just supposed to use it for balance. And while it’s awesome to have a seat that you carry around with you all the time, it just felt awkward and weird, so I won’t be using that yet. The cane, though, we had me walk with that (again – balance! not support!) and my gait was better. “You kind of..sashay without it, but you’re more stable with that.” I agreed. We tried me with two and THAT was ..comical. I mean, I don’t even get that whole two cane thing. Hikers do it. It looks dumb, and it turns out that it feels pretty goddamn ridiculous, too.

So I have officially graduated to a cane now. I am borrowing one from the ALSA loan closet (which if I have not said before? is a FUCKING AMAZING resource to be able to have, they’re awesome) but I’ll get my own. They said I can keep it as long as I want, spray paint it, whatever; I get the feeling they’ve got quite a few of them.

Speaking of ALSA, the next appointment was with Lance, with his Social Worker hat on. We talked about financial planning, and the major upshot of that was GET AN ELDER LAW ATTORNEY. It’s expensive now, but they can help me plan financially for the future care I’m going to need, and if I have tax-shelter like options, it’s better to take care of them NOW, since SSI looks back a little ways when you apply for benefits. We talked a bit about the Walk coming up, and then his time was up.

The next appointment was all about making sure I can still speak and swallow okay. This made me a little self conscious because it involves making a lot of goofy faces to make sure you can move your mouth fine – stick your tongue all the way out, now try to lick your nose, etc. With three other people looking at me. It was not helped at ALL when Gecko whipped out his iPhone like he was filming, even though he wasn’t because he loves me and I would genuinely be mortified if he posted any pictures like that. (*Author looks sternly at her brother* RIGHT??) Then she gave me a graham cracker and water, to watch how I eat and swallow. That, also, was weird to do with a total of four people watching me. She explained how the mouth moves when you eat, and how that starts to break down, when ALS progresses, and what to watch for. But I was doing excellent, she said, and everything is normal.

Then I met with a nutritionist. We talked about my weight, about my diet, about how evil prednisone is for that. She agreed that it’s not good for me to lose weight, because heavier people have better prognoses, and I’ll NEED that fat later, but I also don’t want to be super fat so I need bariatric equipment or anything, so take that in moderation. Losing weight is tricky, because the body burns through muscle before fat and…I really kind of need that. She gave me advice on what to eat, how to do portion control, and was justifiably disdainful of how much soda I consume (even though it’s diet) and was exasperated when I told her I hate water because it tastes gross. And it does. You can say all you LIKE that water has no taste but you’re a LIAR. She suggested infused water – which my work cafe has all the time, they just dump some melon or something in ice water and call it fancy. I guess I can do that. But…soda, man. Delicious soda.

Next up was Shana. <3 We were short on time for her appointment and ended up spending most of it talking about Doctor Who anyway, because Danielle is ALSO a Whovian and she hadn't met Shana yet so yeah, we totally devolved. But it was awesome. Then we met the respiratory specialist; I was gonna be cute and call her a breathologist, but that sounded familiar and it turns out it's a thing and it's a pretty dumb thing at that. So. ANYWAY. She had all KINDS of toys. There was a thing to measure my ...cough aptitude? (which is good) but I had to do it twice because Danielle is a bitch. hehe. It involved coughing really hard into a plastic kazooey thing and she said it was a good cough, but Danielle said, "you wanna do it again?" as a joke but then the specialist said, "That's a good idea". Damn her. And then we measured my lung capacity, which made me REALLY self conscious because it involves breathing out as hard as you can and keep going even after you can't. I sounded a bit like Muttley. And had to do it a couple of times. THAT one I'd rather not have an audience for again. But it wasn't as bad as the breath stacking. Oh my GoD. So! You get a thing (I walked away with fabu-less prizes!) that is a modified one of these: [caption width="800" align="aligncenter"]hurrhhhh...hurrrhhhh... BREAAAAAAATHE[/caption]

Mine is a prettier purple and collapses. It’s a mouthpiece that you clamp your lips over, connected to a tube, which is connected to that bag. You breathe in as much as you possibly can, and then squeeze MORE air into your lungs with the bag, and again, and again, and then hold all that in for five seconds. And then rest a minute and do it again. And then one more. It feels a little like the opposite of drowning? But you’re in total control so it’s not panic inducing or anything, but you think your lungs just can’t hold any more and then you squeeze more in and then again and oh my god I think I’m gonna pop and what do you mean I have to do one more squeeze oh fffffffffuuuuuuuuuuuuuuuuuu

I have to do that routine every day. For the rest of my life.

It’s to improve my lung capacity, and since ALS kills you by robbing you of your ability to breathe? I’m TOTES WILLING to put up with it. But it..dunno. I guess it was a big-ass reminder of HEY DUMBASS DID YOU FORGET YOUR DISEASE WAS TERMINAL OR SOMETHING? BECAUSE IT IS.

Next step was a quick check in with Dr. Goslin, we went over how I’ve been doing and the results of my clinic so far. We’re checking my liver again because Riluzole can cause damage and it’s no good extending my life by 6 months if I’m going to die earlier because of liver failure. We’ve got an appointment in 2 more months for an extended visit to just recheck everything and see where we’re at. It was good for Gecko to meet her, too. She did a quick strength check, we chatted just a little bit about anxiety and stress factors, and then that was done.

And it was only like…3PM with one more visit to go. During one of the waiting times, Danielle mentioned that she thought it would be more of a meeting room environment, instead of the standard doctor office with exam table that it was. “Yeah,” I told her, “I thought there’d at least be a table, so we could color.” The day was hot, and the room was a bit stuffy even before there were four bodies in it at all times.

The last visit was with a nurse. He was a very nice guy – well, EVERYONE I met yesterday was super nice and patient. His job was to talk to me about things like advance directives. He had a packet about all of that, we talked about what it would take to get the form all official – it doesn’t need to be notarized or anything, he said, just signed with witnesses who aren’t involved in the health care decisions. But just in case someone decides to fight it later, it’s a good idea to send a copy to your doctors, and everyone involved in the decision making. The only thing I ever expect would be a problem on that front is some of my very religious family might be opposed to yanking the plug when it’s time because sanctity of life BLAH BLAH BLAH just let me fucking die when it’s time.

I have faith in my posse, though, to see my wishes done.

We were done by 3:30, and I left with some lovely parting gifts – an appointment for next time, an appointment for a followup with Dr. Goslin in 2 months, an order for bloodwork to be done downstairs before I left, a loaner cane, a breathing excercisey thing (they’re called ambu bags when they’re not modified, but I don’t know if there’s a proper name for them when they’re in ALS patients’ hands after modification), and ALSO an application for a disabled parking permit.

Which, when we left, the DMV was still open so we did that so now I have a gimp parking pass! WOOO!~ Instant popularity when we go out for lunch! “Ride with me!” “NO! Ride with ME!” And I also discovered, because Danielle is ON TOP OF THINGS, that I get to skip to the front of the line when you get a disabled parking pass. I guess terminal diseases have SOME benefit, which is awesome because I was number 608 and they were serving 545.

Danielle was amazing through all of this. She kept very diligent notes, which she is transcribing and putting on our shared Google Docs drive where all of my care info is kept (like meds list, lab results, etc). I quite literally don’t know what I’d do without her. Gecko was also awesome in keeping me happydistracted and he had some really good questions. So I’m grateful that they came with me. And then we ate delicious gyros.

And that’s the story of how I did time.

The Interview

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

Here it is!

http://www.kptv.com/story/25869456/als-patients-preserve-their-voice-with-voice-banking?autostart=true

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

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

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

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

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

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

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

Making Video about Audio

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

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

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

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

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

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

I said yes, please.

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

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

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.”

BZZZZZZZZZZZZZZZZT. THANK YOU FOR PLAYING, WE HAVE SOME LOVELY PARTING GIFTS FOR YOU INCLUDING ME NEVER STARTING A CONVERSATION WITH YOU AGAIN.

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.

Can We Talk About This?

Avoiding a problem is never useful.

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

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

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

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

I NEEDED TO TALK TO FAMILY ABOUT THIS SHIT TO MAKE SURE YOU FUCKERS KNOW WHAT I WANT IF THE WORST HAPPENS AND I WOULD RATHER HAVE HAD THOSE CONVERSATIONS *THEN*.

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

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

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

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

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

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

“Does…she want to be resuscitated?”

“GOD WILL FIX THIS.”

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

“SHE HAS FAITH IN THE LORD JESUS OUR SAVIOR.”

“Well, she’s about to meet Him.”

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

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

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

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

Mom:
well, it’s NOT.

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

…I don’t think she’s jealous anymore.

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

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

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