Author: tragerstreit

This is my site, that you are looking at.

Where the Fuck’s My Trophy, Then?

tragerstreit2 Comments

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.

It’s like saying SHUT UP AND BE BRAVE, QUIT YOUR WHINING, BE COURAGEOUS SO WE CAN LOOK UP TO YOU AND NOT JUST FEEL SORRY FOR YOU, YOU STUPID CRIPPLE. YOU WANT US TO FEEL BAD? THEN SHUT UP AND BE BRAVE.

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

tragerstreitLeave a comment

“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.

tragerstreitLeave a comment

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.

Spare Me the Explanations

tragerstreitLeave a comment

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

tragerstreitLeave a comment

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

tragerstreitLeave a comment

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

tragerstreitLeave a comment

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

tragerstreitLeave a comment

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.

Concessions

tragerstreit2 Comments

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

tragerstreitLeave a comment

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:

http://bucketlist.org/list/tragerstreit/

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.

tragerstreitLeave a comment
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.

Home Owned

tragerstreitLeave a comment

For the longest time, I never thought I’d want to own a house. It seemed like a lot of work, and a lot of money, for little reward. I got married, and the idea of owning a house didn’t seem so bad, but still way more work and money than I ever wanted to put in to it. The marriage ended, and I had a three bedroom rental house to myself, and..I liked it. I could put whatever I wanted, wherever I wanted. I could cut out the place and make it my own.

Almost.

I could paint, sure, but..it still belonged to someone else, and the yard was the size of a postage stamp. I wanted a garden. Fruit trees. A yard I could sit in the shade in, and read books. Build a catio, hang out with my cats while I tended the garden. Suddenly I could see myself owning my own house. So I did some math, and some future projecting, and I applied for preapproval, and got accepted. So suddenly I was house hunting. That took FOREVER. And when I finally found the house I wanted, the house I could see myself living in for the foreseeable future, it turned into a short-sale fiasco that took six months of babysitting for signatures and phone calls and a lot of work from the most excellent real estate broker in Portland. (Seriously, if you live here and are in the market, hit me up for her contact info. I love her. She’ll do amazing things for you.)

But finally, finally finally the house was mine. I took possession of it in June of last year. It is, of course, a traditional two story house. Because I don’t like ranch style houses.

I’d only been noticing a problem for about 7 months by then, and they were so, so minor. A little hitch in my walk by the time I got the keys. Certainly nothing to freak out about. I’d started the gamut of doctor appointments maybe two weeks before I got the keys, and over the course of the initial appointments, when I found out that it might be a hip problem needing surgery, I made mental plans of setting up a futon downstairs while I recovered from surgery, but went ahead with all of the flooring and painting that needed doing. And time went by, and I worked on the house, and the limp got a bit worse, and it went from me not having a problem at all with stairs to me using the hand rail more often than not to now, where I need the hand rail to go up and can not carry anything down the stairs requiring two hands.

So now, here I am, in a house I fought for, that I can’t stay in. The layout of it is such that it is ENTIRELY unpractical to think I can still live here when it becomes necessary to use a wheelchair. Even with a stair lift, the doorways are too narrow and everything – my office, the library, my bedroom – is upstairs and there’s no practical place to have a bedroom downstairs. And no way at all to modify the half-bath into a full with a roll-in shower, certainly.

I’m going to have to sell this house. There’s absolutely no question.

The question I’m dealing with now, though, is this: Do I sell and just rent a place for as long as I can live alone? Or do I sell it and buy a single story, smaller house? And if I buy a single story, when? Should I wait for the last minute, until I just can’t even do the stairs anymore? I mean I haven’t even owned this house for a YEAR yet. Or do I start working on that NOW, so that I can buy a house and make it my own while I am still physically able? I was advised to make the necessary renovations as soon as possible.

Just, FUCK.

Fuck fuck fuck.

I don’t want to leave this house. I love it. It’s got its problems, but I’ve got plans. I JUST got my office done where I like it – and since ‘where I like it’ involves…lemme count here…26 wall shelves full of toys, 3 bookcases full of binders and books and toys, and a zillion plastic drawers with all of my computer parts and crafty shit..that was a HELL of a lot of doing. And the ceiling slopes from 11 feet on one end to 7 on the other, and the 11 foot wall is FULL of shelves with toys/models/ stuff. It took me a lot of hours on a 7 foot ladder to get all that up there. And I don’t think I could do that again. I have a ceiling fan that needs an extension put on so the blades can turn without hitting the slope of the ceiling, and I’m not allowed, says my brother, to climb up there myself and do it. The thought of having to pull all of that down again, when I only just fucking got it UP, actually sends me into a precursor of a panic attack. IT TOOK HOURS. It FINALLY feels like I live in here. And to have to pull it all apart and move it again.

FUCK.

But the alternative is to wait too long. And then someone else will have to pull it down for me. And then put it back up in a new house. Or I move in to an apartment, and it probably does not get put back up at all. And I spend the rest of my shortened life living somewhere that doesn’t feel like it’s mine.

So what do I do?

Do I abandon the house I wanted, and finish what I absolutely must in order to sell the place? And sooner than later? Leaving the vision I had of this place unfinished?

Do I go through the whole rigmarole of home searching again? It was SO MUCH FUCKING WORK. SO. SO. MUCH.

And then holy FUCK the whole MOVING thing. I HATE packing. At least this time, hiring movers isn’t even a question, but it cost me a thousand goddamned dollars to do it. I don’t have a thousand dollars to move. I don’t feel like I have the energy to pack my shit.

And then if I buy a new house, then I have to renovate the fucking place, sooner than later.

I just wanted a place of my own that looked how I wanted it to look, with honeycrisp apple trees in the back yard, a nice big kitchen where I could turn those apples in to pies in, and a quiet space to live alone. And now I can’t have that. But do I give it up now or later? Do I wait for it to become an issue? Or do I preemptively resolve long term issues now while I have the strength and the ability? How long do I let life happen to me before I do something about this?

Why couldn’t I have been diagnosed BEFORE I bought the place, dammit?!

Just..FUCK!

I have a lot of hard choices to make, and there’s a lot of work ahead of me regardless. I suppose to real question, is do I want to have a hand in that work and a choice in how things turn out, or do I wait too long to be able to do this myself and have those choices made FOR me. I’m not too hot on other people deciding my future for me. It’s bad enough this goddamned disease is telling me what’s going to be allowed (not that I’m listening), but to leave everything I DO have a choice about, up to loved ones when it’s too late for me to have a say is pretty much bullshit.

I’ve never just allowed life to happen to me, I’m not about to start now.

But this is a really huge, expensive, work-intensive decision. I have some time, but not a lot, to think about it. At least I’ve already made a profit on the house – it was appraised at more than I locked the offer in. So hooray for that. I guess my first step is to call my realtor and ask for her advice.

But first, apparently, I’m going to whine on the internet about it.

I Did a Thing

tragerstreit2 Comments

Reddit hosts sessions with celebrities, where you can ask them literally anything. They did one with the CEO of the company I work for, they did one with Jackson Galaxy of My Cat From Hell, allll kinds of people. But really anyone can do one, based on a life experience (I climbed Mt. Everest) or who you are/what you do for a living (I work in cryogenics) that makes you special. A good friend’s wife is recently going off of her epilepsy meds after 22 years; she hosted a session. It inspired me to do one of my own, so I invited total strangers to ask me anything:

IamA Newly Diagnosed Person with Lou Gehrig’s Disease. AMA! from IAmA

Overall, I had some really great questions, so so so much encouragement, and I learned about some new research. It gave me the courage to go through with making this blog public after all.

Care and Feeding of Your Center Circle

tragerstreitLeave a comment

This one’s important. It was hard for me to originally write this up. You can skip everything else if you want, I’m pretty boring, but if you feel like you want to support me through this shit, then this is what I need you to know.  The tl;dr is at the end in bold, you can skip to there if you want to.

I’m a big fan of optimism. I am a very (obnoxiously) optimistic person. There is, however, a thin line between optimism and denial, and I skirt that line every day. In order to do a proper advance directive, I need to dip my toes in the other pool. The one that says I am going to end up in a wheelchair and then hospice and then I’m going to die. I need to think about how I want to handle all of those things from a practical standpoint, and at what point do I really think I want to be done with it? What is my timeline? And when things get bad, who can I rely on? Who am I going to burden with taking care of what? And in order to do all of this, I need to be allowed to be sad. I need to be allowed to really, truly feel the panic of knowing I’m going to die. To know that I’m going to be trapped in a meat shell with a clear mind. And that fucking SUCKS. I need to deal with that grief and mourn who I will never be allowed to be, in order to get past that and make rational decisions.

There’s gonna be a lot of crying. And anger. And despair. And I need to be allowed to do that, on my own, without interference. I know that you want – NEED – to be here for me. But I hate being a burden and I’m really bad about reaching out for help when I need it. I don’t like seeing people I care about in distress, especially when I’m the cause of it – whether or not I can help being the cause. Believe me, I’d love to not have anyone have to worry about this. I really, really would.  And part of my inability/unwillingness to reach out for help is my stupid avoidant bullshit. Because I don’t want to cause drama, I am allergic to awkward situations, and even worse is when I reach out for help and don’t get what I need.

So let me help you out, and help myself by doing so, and maybe help some other people going through serious shit and need support. I’m going to give you a phrase. Use it liberally.

“I’m really sorry that this is happening. It must be really difficult.”

That’s it. Or some close variant. Acknowledge my suffering, and empathize. I don’t need “everything’s going to be okay!” or “it could be worse!” or “hopefully it won’t actually come to that!” Sometimes, often times , I don’t need an uplift. I just need someone to know that it hurts, and it’s hard. That’s all. I don’t need you to solve the problem for me. I don’t need to be rescued. I don’t need to be cheered up or distracted. When I want those things, I will ask for that specifically. If I reach out, if I say, “I’m having a really hard time right now and I need support for a bit,” I just want you to listen to me for a little bit and then say “I’m really sorry that this is happening. It must be really difficult.” If I say, “I’m having a really shitty time, I need a happy distraction,” THAT is the time to pull out the anime and kittens or whatever. If I trust you enough to tell you I need you there for me, I just need you to hear me, and agree that it is shitty. 

Also? KNOW that I am shit at reaching out. Maybe check up on me once in awhile. Just “hey, how are you holding up?” once in awhile. I’ll tell you what I feel like telling you. And this is important, so I’m putting it in a line all to itself:

Don’t fucking ride my case if I tell you after the fact that I had a hard time because I didn’t call you. 

This is a very important one. Because it will sincerely piss me off. Chiding me for failing to call you feels like you’re vilifying me for my own suffering. Don’t do this to me ever. Just tell me that option is available. “If it happens again and you need someone, I’m available.” not “You should have called me.” I mention this specifically because I kind of got in a fight with a friend over this, and it caused me to be pretty unkind to him. Disclaimer: I GET it, that’s how he is, he is like me and uses goofy kid words, and jokes to make a serious thing lighter. It’s why we’re the best of friends and I love him a lot. (I do love you. But holy shit this was the exact wrong thing to say at that precise moment.) But when your best friend – who is dealing with some serious, maybe life-threatening shit – tells you that she had a really rough week last week and she’s kind of in a weird headspace, this is NOT how to respond:

“Erg. No good! Why didn’t you call me! I mean, I know I can’t help balance the chemicals in your body out, but I could have given you a shoulder and some distraction! You were a naughty sad-face!”

Naughty. Motherfucking. Sad-face.

I didn’t ASK for a shoulder because I didn’t WANT one. I KNEW that it was chemical depression, that week, because I was on a new medication and it was seriously fucking with me. And when the real crying happens, it needs to be PRIVATE and PERSONAL so that I allow myself to just BE without worrying about how I’m distressing someone else. I did not WANT a distraction. I would have asked for one. And unfortunately, I’m probably going to be LESS likely to call on him, because he treated me like a fucking three year old when I said I was sad. Like I’m not able enough to handle my own shit, I have to have adult supervision. An adult that chides me with toddler words.  He also threatened to start randomly coming over to check on me if I didn’t reach out more.

…Don’t ever do that to me. Even when things are going great. I fucking HATE surprise social situations. Being an introvert AND an avoidant personality makes me allergic to surprise social situations. I will be gracious to your face when you show up, and hate you a little bit while you’re here, and be very, very resentful when you leave. Also so much less likely to call on you when I do need to reach out to someone. I promise you that it would NOT go over well. Because it never has.

I have been told that I should reach out and call because the thought of me crying my face off by myself is a depressing thought. Which is a really sweet sentiment, I get that you are concerned about me , but that statement makes the whole thing about YOU, and reaching out when I’m like that may be impossible and probably counterproductive. I can not be honest and open with my own feelings when I know I have a witness. I just can’t. I can sort out for myself what the fuck I’m feeling and then express that to you later, but when I am experiencing them for the first time, I need to do it privately. Maybe it hurts you to think that I was suffering alone (again, this isn’t really about me, it’s about you – and it feels like you’re using it against me as emotional blackmail). And when I apologize for making you really sad and uncomfortable with my conversation, don’t tell me “not hanging out with you and feeling like you are having to deal with everything on your own makes me even more sad and uncomfortable”.

Because sometimes it’s not about you.

In fact, this is NOT about you. At all. This is about me. Center motherfucking circle.

I need to be free to not give a shit that you’re unhappy that I don’t reach out when I’m unhappy. Because if I feel like I need to be alone in my unhappy, then I will BE alone. If I feel like I need a voice, I will call you. And if I don’t want to talk, I won’t. Because it is all. About. Me. Don’t make me feel like I have to alter MY behavior when I’m sad in order to make YOU feel better. I really fucking DON’T. I am allowed to be sad, and cry until I throw up, alone in my room. In the dark. And not call you. I probably wouldn’t be able to make myself understood through the crying, for one. And then on some level, I’m going to feel obligated to pull myself together a little bit because there’s someone else around, which interrupts my grief and makes it less effective catharsis. I need to be allowed to have my mourning alone. When I want to NOT be grieving, when I want to be happier or comforted or distracted, THEN I will call you. But sometimes? A bitch has just got to get her sobs on. It’s part of the whole thing. And the spectacular way that I am psychologically broken means that I need you to back the fuck off and let me do it privately.

I know this is hard for people that care about me. And you have every right to your reactions and your suffering. And I want you to be able to tell me about them without feeling like you’re burdening me about something that’s happening to ME in the first place. I care about you very much and I want to be able to tell you it’s going to be alright, one way or another, because it really is. I promise it’s going to be okay.

But, see, if you are center circle – REGARDLESS of the severity of the problem – and you tell me you just need to talk, I will listen. And I will not make any kind of demands for your time and attention, even if I think – even if I KNOW – you’d be better off for it. I will remind you that I am available if you need me, and say “I’m sorry that this sucks for you too. It must be really frustrating.”

Because that’s what you’re supposed to do.

tl;dr:

It doesn’t hurt to check up on me once in awhile. I have a hard time reaching out.

Don’t chastise me if I don’t reach out when I have a bad night. I don’t necessarily want or even need someone every time.

I know you’re there if I need you. If you feel I need the reminder when I tell you I’m having a hard time, remind me. Don’t fucking mandate it.

DO NOT threaten to just dropping by to check on me unannounced if I don’t start reaching out. I don’t need a goddamned babysitter and I WILL resent you for it.

I will ask for distraction if I need it. Encouragement, if I need it.

Otherwise, “I’m sorry this is happening” is all you need to say.

I can’t control this situation. I can’t control what is happening to me. I can’t control your reactions and your feelings. I can only own how I react and deal with all of these things, and I’m trying to figure all of that out. I’m looking for a therapist for some professional help with this, too, because I don’t have those coping tools. I can’t predict how I’ll react to any given thing. This shit didn’t come with a manual. 

And neither did I, which is why I am telling you all of this.

The Silk Circle Theory vs Sympathy Points

tragerstreitLeave a comment

Okay, the first thing I need you to do is go read this:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

It’s important enough that it lives in my sidebar forever and for all time. I wish this was mandatory training in school when we are children. It would have saved me from accidentally being an asshole and inadvertently causing grief for those I love when they’re having a hard time. The center circle is the Sun, the outer rings are the planets; the closer they are to you, the tighter they’re pulled in to your drama orbit. You radiate pain and complaint, and they absorb it in the name of love and comfort. The Silk Circle theory takes the phrase “it’s not about you” and expands it to include a very simple two-rule set of mandatory behavior. Comfort in, dump out. The end.

I have taken “CENTER CIRCLE, BITCHES” to be kind of a mantra. It’s as much a reminder to the people around me that I need support, not drama, as it is a reminder to myself that it’s okay to be selfish about some things. I do not *have* to consider the feelings of other people when writing up my advance directive. I do not HAVE to be shy about what I honestly want on my bucket list. I do not have to apologize for being the bearer of bad news when people ask me if I’ve figured out what the limping is about yet.

I do not have to participate in my caregivers conversations involving delegating responsibilities. My social worker actually said that it’s best if I’m NOT involved. Just…work that shit out behind the scenes, and I will rely on you as a whole that it is getting done. Because I appointed you as caregiver. Because I trust you.

As center circle, though, I need to be cautious that I don’t burn out the bigger rings. The diagnosis is new. I have some leeway. But I am absolutely NOT allowed to make them miserable by complaining non-stop and insisting that life is All Vashti, All the Time. There are other channels besides ALS SUCKS ASS. The channels that made people tune in to me in the first place.

In addition to the Silk Circle, there are Sympathy Points. I’ve had this belief for more years than I know, it’s something that’s always been true and eventually I figured it out in words. Sympathy Points are a crucial part of any crisis, too. They work like this:

You get ten.

Each instance is one event. One illness, one accident, one breakup, one lost job, one stupid mistake, one whatever it is that puts you in center circle. One instance of you totally losing your shit and you need me to help put you back together. And for each of these ten instances, you have everything that I am capable of giving to you for help. Ten instances where I will give you my absolute sympathy. I will do my UTMOST to help you and fix your problem. Ten instances of me taking the bus to the hospital to sleep in a really uncomfortable plastic chair in your room with a watch timer set to go off so that I wake up to press your morphine button for you so that you can sleep without pain. Ten instances of 2AM phone calls in tears because you can’t believe he left you and I will listen to you even though I have to be up at 5 for a very important presentation at work the next day. Ten emergency showings-up to your house this weekend because you suddenly got evicted and you need to move your shit, like, NOW. Ten instances of me loaning you the content of my savings account because you can’t make your rent because you were sick too often this paycheck.

Sympathy points regenerate, over time. Slowly. You might spend more than ten over our relationship. But if you use them all too fast? Then they’re gone forever. Once they run out, you never get another one. That means I don’t loan you money. I don’t show up at your house with cupcakes and cartoons because she just left you. I don’t take the bus two hours out to your place after work to watch your kid because your babysitter bailed on you. I won’t go out of my way for you at all. Instead, I will pat your back sympathetically and tell you I’m sorry that this is happening to you.

The end.

Because running out of sympathy points means you’re a fucking trauma queen.

Ten is a LOT. And to have ten crises in a short time is very, very hard to do; it’s more likely that you’re not having ten legitimate crises; you’re probably overreacting, or creating the drama for the sake of the drama. Or you just have a really, really shitty outlook on life and take everything as the worst case scenario. Either way, that means you’re toxic. And that means I do not need you in my life.

As center circle, it is my duty to not burn through my sympathy points. This is, as a matter of fact, all about me, but I must be careful to not burn out my support structure. I have an advantage of being automatically inclined to optimism, and I have a buoyant personality by nature. I can’t NOT pay attention to how my actions are affecting other people. On your fifth or sixth time around being Center Circle, you ought to look around and make sure your circles aren’t drawn around yourself for no reason. Make sure you’re not the boy who cried Wolf, make sure you actually need some help instead of just wanting attention, or eventually you’ll discover you’re out of sympathy points and find that there’s no one who gives a shit. Alone in your center circle.

I need to be careful to not kick my planets out of orbit. I need those guys. They’ll forgive the first couple of solar flares, but after awhile, I’ll find only cosmic dust.

All of My Stuff is Shit Someone’s Going to Have to Deal With

tragerstreitLeave a comment

I am a very ‘stuff’ intensive person.

It’s not hoarders level, no, not quite yet, everything has a place and a reason for the most part. Except the boxes of VHS tapes out in the garage I need to go through and convert some of it to digital. The rest of those are just random comedy and shit I’ve taped over the years because I have an insane need when I like something to obsessively collect ALL OF IT. But there’s some important stuff on some of them. My 6th grade school play, videos of cast performances of Rocky Horror Picture Show. You know. Blackmail material. Important stuff. Other than that, though, I’ve got like 7 boxes of VHS tapes to toss. When I get around to sorting through it all.

Tthere’s been a lot of sorting through stuff already, but it could easily be a full time job if I let it.

A terminal diagnosis gives you a different perspective on a lot of things, it goes without saying. But one of the perspective changes that’s hit me hardest, one of the most concrete OH HEY YOU ARE REALLY GOING TO BE DEAD slaps to the face is the knowledge that someday, someone is going to have to go through all of my shit and decide what’s worth keeping.

…Not a lot.

I’ve been casting a more critical eye on my belongings lately. WHY do I have that thing. WHY do I keep those papers. What is someone going to think of when they have to sort through this box of random crafty shit. Are they even going to bother? Am I REALLY going to use this notebook of blank paper with water damage on the edges? Is anyone else going to want to? Am I going to actually make something out of these little bottles or is it taking up space? Having a suddenly finite time to get shit done forces you to narrow your perspective and see your belongings with an outsider’s eye.

So I’ve been getting rid of a lot of things, but I have to be careful that it doesn’t turn into a fatalistic FUCK IT THROW EVERYTHING AWAY IT’S ALL MEANINGLESS. Just…”This is a drawing I did in 6th grade. No one is going to care about this but me. Hell, *I* barely care about this, I haven’t even looked at it in like 20 years.” So I scan it and toss it, or just toss it. “This is a skirt I’ve meant to mend, but I know damn well I’m never gonna.” Toss. “This is a stack of books I’ll never read again.” Sell. “This is a dirty plushie that has some small significance to me but has been languishing in this box for sentimental reasons for like, ten years.” Toss.

This is all stuff I should have been thinking about, all along. A critical eye that everyone should ALWAYS have when keeping things around. I’ve collected a lot of random things with no lasting importance in the grand scheme of things, and I’ve carried them around with me for a lot of years, without ever looking at them. It’s been pretty interesting, viewing my stuff as an outside observer. “Why the FUCK did she have, like, a MILLION blank notebooks?!” “What the hell is with this little jar of cat whiskers.” “Forget the cat whiskers, why does she have a glass baby bottle full of burnt out matches?!”

BECAUSE IT LOOKS AWESOME.

I have a lot of stuff I’ve been collecting for creepy décor. Probably won’t make it to BE décor now, but maybe I can find someone who would appreciate it. I’ve been making an effort to go through all of this stuff as time permits NOW . Not only so that when I die, someone else doesn’t have to, but so that when I inevitably have to sell this house and move someplace wheelchair accessible, I don’t have to deal with it THEN either. Thinking of likely adoptees for some of this stuff, and realizing with more than a bit of sadness that some of my most awesome things mean absolutely nothing to anyone else, and will be trash.

And then there’s the dozen photo albums full of stickers. It’s an awesome and an embarrassing burden.

At what point do I stop collecting things? My collection still makes me happy, and so I still want to add to it, but there’s a gut-wrenching feeling, knowing that it’s…kinda pointless and is just going to be something someone has to deal with when I am dead. Realistically? That’s true of everything, and always HAS been. Everything you own, unless you deal with it, someone else is going to have to, when you’re dead. It puts a very somber note to material possessions.

Which does not mean I’m going to throw or give everything away while I am still alive. I like my stuff. It’s just that I’m developing a keener eye towards what is actually useless, even from an entertainment perspective. I have birthday cards from when I was a kid. Am I ever going to look at them again? No. But it feels so awful to just chuck them in the recycling bin. Those are my memories. But they’re just mine, and no one else cares, and they’re taking up space and eventually they will take up someone else’s time, needlessly.

Some days I care more about that than others.

Some days I feel like giving away everything that I can while I’m alive, to know that it was accepted and appreciated by the people I wanted to have it the most. Regardless, I want to ask people to be honest with me when I ask them, “would you like this?”. I feel obligated to do my level best to sort out these things while I’m still able to, so that no one has to deal with it when I’m gone. No fights over anything, no arguing over who has to deal with it, no resentment that X person got Y thing and you only got Z. Which is a real thing that has happened in my life before with Christmas presents and it devastated me. I’ve also had to stand by and watch relatives argue over my dead grandfather’s things. It’s a really shitty situation.

And you know, there is really no delicate way to ask someone, “when I die, is there something I own that you want?”

Who gets my drawings?

Whoever gets my computer gets it sans hard drive and that’s all there is to it, sorry. My best friend has strict orders to destroy that.

Don’t think that’s not going in my advance directive.

Can We Talk About This?

tragerstreitLeave a comment

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.

My Medical Posse

tragerstreitLeave a comment

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

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

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

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

Physiatrist – who asked for an MRI with the…

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

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

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

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

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

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

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

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

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

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

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

Physical Therapist #1 – and the next week with…

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

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

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

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

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

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

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