Category: Coping Mechanisms

Inappropriate Friends Are the Best Friends, Part 2

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We went out early so that we could have brunch before the clinic appointment; Danielle, Gecko, and I. We went to a favorite cafe in Portland, around 10:30 AM. While waiting for our order to be taken, Danielle looked around at the cafe’s other patrons.

“Wow, there’s a lot of retirees here. This is the life. Just…come on down here, and read the paper and have breakfast.” She looked over my shoulder, gesturing with her chin. “They brought crosswords. That’s adorable.”

I could easily come to love that lifestyle. Wake up later in the morning, meander down to a delicious breakfast, and enjoy a slow morning with a book. Trouble is, when I don’t have to worry about work, I won’t be able to ‘meander’ anywhere. I’ll stop working because it is impossible for me to operate a computer in order to do my job. That means I can’t feed myself either.

“When I’m retired,” she said wistfully.

I pictured Danielle and myself at the tables, me in a power chair, shooting daggers at her with my eyes while she pointedly ignored me in favor of her book. She’s threatened to do terrible things while I’m helpless. Like dress me in pink. I was going to tell her my inappropriate joke, so I started, “I’ll be disabled.”

She cut me off matter-of-factly. “You’ll be DEAD.”

…and then we disturbed all of the retirees with our howls of laughter.

Walk This Way

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I’ll be in a wheelchair someday.

 

This is just fact.  It isn’t sad or depressing, maybe frustrating because I’m powerless to do anything about my own impending powerlessness. For now, I’ve got braces on my legs.  Then probably a cane, and then probably those crutches that have the arm bands.  I’m sure there’s a medical name for them.  Hang on.  Lemme Google that.  They’re called “forearm crutches”.  Well, that’s disappointingly obvious.  There are some pretty cool looking ones tho.  ANYWAY.  Tangent.  Sorry.  After the crutches will be a wheelchair.  Maybe a manual one because my arms are still really good, and maybe not, but certainly, inevitably, an electric one.  Vrooooooom.

 

Even before my diagnosis, when I was losing the ability to walk, everyone told me “you’ll have the coolest wheelchair EVER” and “You’ll have the pimpenest cane EVER”.  And I really, really plan to.  I joke about cards in the spokes and streamers, but dammit, if I’m gonna sit in the fucking thing forever, I’m going to make it a comfortable and classy ride.  And if I’m going to carry something around with me everywhere I go, it IS going to be an awesome cane.

 

A dear friend of mine was having his own sudden health crisis, and he showed up to work with a cane.  He commented that it’s a lot harder to walk with than you’d think.  I don’t doubt it.  With every step of this progression, I am having to relearn how to walk.  I had to learn to be more conscious of my foot drop so I didn’t trip over things.  With the braces, I’m having to learn to trust them not to break and not feel like I have to stoop over when I walk so I don’t lean on them.  They’re so lightweight and springy I feel like they’ll snap, but carbon fiber’s pretty hardcore and as long as I don’t go all Portal with them, I’ll be fine.

 

In said friend’s post, a friend of his commented that he hopes my friend got a really cool cane.  And since my friend is a musician, he linked this one:

 

https://www.etsy.com/listing/93330041/custom-order-walking-cane-tenor-guitar

 

….WHICH IS FUCKING AWESOME.

 

And of course, because etsy is already one of my favorite wastes of time (as evidenced by the number of things from etsy on my Amazon wishlist (thank you very much Amazon for making that feature because it is awesome (okay I think that’s enough parentheses (no, we need to go deeper (ok seriously I’m done (let’s see if I correctly close them all out))))), I poked around on that sire awhile to see what kind of cane I’d buy for myself, if I needed one right now.  And I have a lot of options, just from etsy alone.  I’ve learned a couple of things.

 

  1. People on etsy make canes that would actually, physically HURT to use for their intended purpose.   I intend to wear gloves when I have to go this route so I don’t callus the shit out of my hand, but can you imagine having to trust your weight with your hand on this? http://etsy.me/1s3I1Jt
    1. SERIOUSLY.  http://etsy.me/1sIA2hu
    2. http://etsy.me/1r4zhSp  WHAT AM I SUPPOSED TO DO WITH THAT, SIR.
  2. You can go out in to the woods, pick up a stick, put a rubber stopper on it and call it a cane.  And charge $60 for it.  http://etsy.me/1jkM0O8
    1. Or $69.  http://etsy.me/1nfS31E
    2. http://etsy.me/1r4zIvL  $87 ARE YOU KIDDING ME
    3. HOW IS THAT A CANE http://etsy.me/1s4UxaO THAT IS CLEARLY JUST A STICK THAT YOU FOUND.
  3. You can buy canes that are going to break the moment you put your weight on it.  http://etsy.me/1ory69e
    1. Or might look awesome but still look like they’ll break  http://etsy.me/1jinDuJ
    2. Seriously this one is awesome but it feels like it would snap instantly http://etsy.me/1q0FvBT
  1. And then there’s this fucking thing.  http://etsy.me/1oJr971  *makes Skeksis noises*  Channnnncellor!
  2. Also, there is such a thing as a cane cozy.  http://etsy.me/1oOK1kn  I can’t tell you how much that weirds me out.  Or explain why.  http://etsy.me/U6Ye16  Just..wow.

 

But there are really good ones out there.  A lot of solid, dependable, suited-to-the-purpose-without-being-medical-looking ones.  If I had to get one today, it’d probably be either http://etsy.me/1xErFHy or http://etsy.me/1qoL3Ds .  Or both.  One for dailies, one for Sunday best.  😀

Outfitting yourself with a cool accessory is a powerful coping mechanism, I’m finding.  I feel SO much better about my pills and pills and pills since I made the apothecary shelves with them.  OH!! I haven’t showed you that lately!  I have Apothecabinet Mark II now.  Separate post.  Yep.  It’s like consoling yourself to go through chemo by thinking about all the awesome wigs you can get and have a different hairstyle whenever you feel like it.  I have to take a lot of damned medicines, but I feel better about it dispensing them all from little awesome jars.  Yeah, I’ll have to walk with a cane eventually, but it’s gonna be an awesome accessory, besides being functional.

My chair will totally have metallic glitter paint and stickers.

Denied

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Dr. Goslin’s sidekick, the amazing and trusty Donna, emailed me this morning.

“Cigna denied the prior authorization request for Athena. Dr. Goslin did a peer to peer review, and they still denied it. It is unfortunate that this got dragged out so long, only to have them deny it in the end. I am sorry.”

Athena, of course, being the company that does the genetic testing. We were going to see if I had the markers to allow me to participate in the bulk of clinical trials going on. And Cigna said no. Even after Dr. Goslin explained to their faces why it was important. And it IS important.

I feel defeated. Like…this test? And the ability to participate in the best research going on? It gave me hope that maybe my fucking disease might be USEFUL to someone. We won’t see a cure for this in my lifetime, but goddammit I wanted to be a datapoint at least in GETTING there. I want to HELP.

I don’t know how much the test costs. The last one was nearly $12,000. So yeah, I won’t be able to just DO the test on my own. I am beyond frustrated. I am angry, defeated, disappointed, crushed, depressed, all of this and everything else.

I want this fucking disease to mean SOMETHING to SOMEONE. To get SOME good out of it. To be useful.

And now instead of having the chance to be a data point, I’m relegated to be a statistic.

Inappropriate Friends are the Best Friends

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AKA: Things I Say That Apparently Only I Find Funny, Part Two

At my job, we go through a yearly review process called Focal. As a part of that, mid-year we do a baby Focal with our managers as a way to touch base with where we are, where we’re going, and how to get there.

I had the following conversation over work chat with my friend Jack:

Me: Can I list “was diagnosed with a terminal disease and successfully did NOT lose her shit” as a focal point?
*Organized
*Team-centric
*Dying

Jack: “Dying but upbeat! Until she dies.”
“Then no beat.”

Me: Areas for Improvement: Dancing.

Jack: Notable accomplishments: Swagger.

Me: Strengths: Pretending that any of your shit even matters, in the grand scheme.

Jack is one of my favorites because he goes with it and is even more horrible than I am.

Support Structures

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I never got to meet the other woman involved with the voice banking story; she’s much further along in her progression than I am, and it’s really hard for her to get around, so they did her segment at her house. She sent me an email yesterday, expressing regret that we didn’t meet. She asked if I had been to a support group yet, and told me “It can be a bit scary at first but you soon forget all that and come to enjoy the great people.”

Scary, maybe. Intimidating as all FUCK, certainly. I’m an introvert, I have social anxiety, I…don’t do well in crowds. Outwardly, I’m just fine. Inwardly, my mind is racing “oh shit oh shit she’s going to come talk to us oh shit shit shit what do I even SAY oh shit here she comes she’s asking our name WHAT DO WE TELL HER oh right our name that’s easy. Ask hers. ASK HERS. CASUAL. FUCK. WE ARE NEVER GOING TO REMEMBER THAT. I hope we never meet her again even though she seems nice because we won’t remember her name and it will be HUMILIATING and OH SHIT SHIT SHIT SHE IS ASKING ABOUT SOMETHING. WHAT IS IT. DO I HAVE KIDS. OH SHIT. WHAT’S THE POLITE WAY TO SAY FUCK NO NEVER NOT IN A MILLION YEARS YOU MUST BE JOKING? “I have cats and that’s close enough for me”? Really brain? That’s the best you could co..oh she’s laughing. GOOD JOB BRAIN HIGH FIVE. Oh but what if she’s laughing AT US. OH GOD WHAT TIME CAN WE LEAVE HOW LONG HAVE WE BEEN HERE oh five minutes, that’s all? Shit. Shit shit shit.”

All social interactions are scary to me. With strangers, exponentially so.

Though, I admit I do have some fears about going to support group. I know it’s going to be a harsh reality check to see people in advanced stages of my disease. I’m not sure I’m ready to be confronted with that. I already have a little bit of the “huh, that’s what the future looks like” when I see people in wheelchairs. Mostly that’s fascination, though. But my real fear is that the support group is going to be like the ALS forums.

Because CHEEEZUS MARY CHRISTMAS.

The fucking NEGATIVITY and SELF PITY and ENTITLEMENT. “ALS IS THE WORST THING EVER AND MY LIFE IS SHIT AND NO ONE UNDERSTANDS AND EVERYTHING IS TERRIBLE AND HOW DARE YOU HAVE FUN AT ALL WHEN I AM DYING SLOWLY YOU SELFISH FUCKERS.” And then there’s the constant “We lost a member today! RIP Twitchy Twitchertons, who lost his battle with ALS today.” Negativity and Mortality! Two great tastes that taste great together! YOU GOT YOUR OBITUARY IN MY COMPLAINT! YOU GOT YOUR SELF PITY IN MY FUNERAL ANNOUNCEMENT! *slow camera pan as they both realize that they can be miserable..TOGETHER! Fade out as they live happily ever afte….oh who am I kidding. They die alone after alienating everyone they ever knew* And scene. Print it.

I’m terrified that support groups are going to be live action reenactments of all that. Because my social anxiety would never let me stand up and say “SHUT THE FUCK UP, SALLY, LIFE IS REALLY NOT THAT BAD.” “Yes, Don, you’re DYING. So is EVERYONE ELSE EVERYWHERE. You are not a unique snowflake and your terminal disease is NOT licence to be a FUCKING DICK.”

…I’m so gonna print that on a bumper sticker.

Well, at least I won’t have to deal with the “Sometimes? I get tired. And my leg fell asleep yesterday. Does this mean I have ALS?” people. “NO SRSFACE GUISE I AM NOT AS STRONG AS I USED TO BE I THINK I GOT LOU GEHRIGSES.” You’re seventy. Yes. You’re probably weaker than you used to be. IT IS CALLED AGING. It, too, is terminal, but it doesn’t have its own nonprofit. But I’m pretty sure there are support groups. They CALL it bingo night, but let’s be honest, that’s not what it’s for.

I’ll probably go and check one out, though. I’ll be brave. And hopefully I won’t have to deal with my OTHER fear, which is me sauntering in there with my leg braces and the others being all “PFFT, BRACES-GIRL, COME BACK WHEN YOU’RE DEALING WITH THE REAL SHIT.” even though I KNOW that’s completely irrational. There’s no DME exchange rate on entrance into the ALS Club. You must be THIS bogged down in medical equipment to go on this ride.

Support is important, though. As is advice, from people who have fought on the front lines, so to speak. The woman who wrote me that email suggested that I get a signature stamp made sooner than later – and I don’t know that it occurred to me yet, that I’m going to need such a thing. I bet there’s all kinds of amazing tricks to this shit, resources I don’t know about yet, that other people can give me. And maybe, when my bouncy happy freaklet self waltzes in there, maybe I can give them a breath of fresh air by NOT being one of the Forum People.

Because my second circle has strict orders to put me down, if that happens. Occasional lapses into self pity are fine, but if I become all about “WHY ME” all the time and “I HAVE IT WORST OUT OF EVERYONE ALIVE” then ….Old Yeller style, out back behind the barn. Ka-blam. I will NOT become that person. There’s enough of those assholes already, and they’re all on the forums.

Sweat, Surrender, Strength.

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The pamphlets and the wiki articles and the doctor advice all say that ALS is exhausting. Your muscles are working harder than normal just to keep you upright. Your body is burning massive amounts of energy just to BE. And then when you ask your body to actually do something? It’s like you’ve run a marathon.

Literally.

It’s just under one mile to the bus stop from my house. It’s not a hard walk, it’s all curvy residential streets, there’s no sidewalk for a little of it, but it’s not that difficult. Google Maps says it takes about 18 minutes. It takes me about 25 to 30. Yesterday morning, I headed out to run a couple of errands, so I walked to the bus stop to head out. It was 58 degrees and overcast; I was dripping sweat by the time I got there. Everything is so much harder than it used to be, in the stupidest of ways.

That bullshit thing with the spoon theory and the budgeting of your energy? It’s not really bullshit, turns out. …Not that I thought that it was to begin with; I’ve had chronic headaches my whole freakin’ life and I knew how draining it is, to be in pain all the time, how it steals your energy and makes it hard to just be alive. The budgeting, though. Man. I knew nothing about the budgeting. I thought I did, but HOLY FUCKBALLS I had no clue. I HAVE SEEN THE LIGHT. AND IT HAS SPREADSHEETS AND SCHEDULES.

My errands yesterday were *supposed* to be simple. Take the bus up the road to the post office to mail something, then head back home and stop at the store on the way to pick up my new, smaller prednisone scrip. Only…the post office didn’t have an actual COUNTER open, like they used to, it was just a machine that prints shipping labels, and it didn’t do international. I had to take a different bus to the main post office to mail it instead, which was about an hour away after waiting and bus ride and walking. After accomplishing that, I should have come home, but I was on a mission for little shelves for my apothecary bottles, anyway, so I walked about a half mile to the mall, and wandered a home goods store, but they didn’t have anything shelf related but DID have socks with lobsters on them. So I bought those. I got some lunch, then went to the beauty supply store nearby cause I’m out of top coat, then to another store in that same parking lot that might have shelves but didn’t, and then to the bus towards home. I hit up the store on the way home, got my scrip, and then wandered around a little while looking for various things (shelves, cute socks), bought some cleaning supplies, and walked the mile home. My backpack was full; not really heavy heavy, but it had some heft to it.

It was 64 degrees, 4 PM, and I was panting like I’d run home.

Out. of. goddamned. spoons.

And that budgeting thing is for REAL REAL because at the end of the night last night, I had to stop every other step when I brought up a laundry basket. I was just done. Stick a fork in me. This morning, I found myself pulling myself up by the rails going upstairs, because there wasn’t strength enough in my feet to get me there by themselves. I am bringing laundry upstairs by setting the basket on the stairs, walking up to it, set the basket up two more stairs, lather, rinse, repeat.

That will teach me, right? I mean, I KNEW it was stupid to do so much, but my stupid brain was all “Hey, we used to do this all the TIME, man! Just..take the bus out, walk around, maybe buy some stuff, maybe not, but just have a day wandering around. Good times, man.” and my body was all “Dude we’re not in college anymore, go home and sober up, Brain. And stop peeing in my bushes. I WILL call the cops, asshole.” “Douche. You used to be cool.” “Yeah that was back before you made us walk all the fuck around the city to prove to yourself that we still could. Turns out we CAN’T, asshole. Now seriously, I wasn’t kidding about the cops.”

It’s taken some getting used to. I’m having to relearn some behaviors, but they’re not all bad. Asking for help comes easier, which was a hard lesson. I’m a fiercely independent person; I can’t stand bothering other people for things I should be able to do myself. For the whole first YEAR of my ten-year relationship with the boy, I STILL asked for rides to places, to the point where he told me, “I will DRIVE you to the store, woman. Just tell me you need to go get groceries and we’ll go. You don’t have to ASK every time.” But I did. Now, though, there is no more demurring when there’s an empty seat on the bus. Before, my social awkwardness would make me just stand there the whole ride, even though all I had to do was ask someone to move a little so I could sit. Any more, ‘Excuse me, may I sit?’ is easily out of my face if I don’t just brush them aside gently and plop myself down.

I’ve learned to stop denying myself an easier time because I didn’t want to ask for it.

I’ve had to swallow my own advice to friends in need – there’s no shame in asking for help. There are people around who love me, people who want to help me. A ride to the fucking store may be the only way they can help, but IT MEANS THEY CAN HELP. And I should let them. There will be time for independence, time when I can’t do things for myself, but I don’t need to refuse a hand now to prove to myself that I don’t NEED help. I can ask for it anyway. Even if I can still do it myself. It’s breaking me in, for a time when I can’t. When asking for help will be mandatory and not a luxury, when my pride writes checks my strength can’t cash.

Besides, sweating is gross, and if I don’t have to, then why the hell should I?

Socialsssszzzz

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heh. Now you can like my posts.

I AM AN ATTENTION WHORE APPARENTLY.

Seriously, though, as much as it probably came across as needy and weird when I replied to a comment to the effect that “OMG THX 4 UR COMMENTZ” on that last post, I really do love to hear you guys. YouTube aside, sometimes the comments are the best part of a blog. Besides, no matter who you are, when you are going through something rough, you can get lonely. Even surrounded by people. And sometimes it’s enough to know you’re heard.

So thank you, for letting me hear your voices, too.

Playing House with Godzilla

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Before I had a name to my disease, I was calling it Godzilla Disorder.

…Okay, yeah, I need to explain that one.

I didn’t have a name for my problem, only symptoms. Only theories. And so, when someone asked why I was limping, I had no real answer. Just vague theories. “I have some kind of neurological thing going on.” Hand-wave. Again. How do you break that to someone who’s only a casual acquaintance, anyway? “Just losing my ability to walk, thanks. How are you?” While complaining about this dilemma to my very patient best friend and main babe Danielle, she suggested I just tell people “I got attacked by Godzilla in the legs.”

And this is why we love Danielle.

And so ever since, I refer to this as Godzilla Disorder. Even now that it has a proper name. A name scarier than Godzilla. Someone later asked if I called it Godzilla Disorder because it made me walk like I was in a rubber monster suit. Which also made me laugh. Thankfully this was pre-braces, so my walking is SO much better now. I’ll have to attack Tokyo another day.

So, to get to the REAL reason for this post. It’s about back when I was still calling it Godzilla Disorder because I had no name for it. When we didn’t know what was going on, and I’d been through a lot of doctors and tests and MRIs and a spinal tap, I noticed that everyone had their pet theories for what was wrong with me. I had many people playing Dr. House and suggesting obscure things that aren’t ALS or a neuropathy but have similar symptoms. Could it be a vitamin D deficiency? Lead poisoning? Shellfish poisoning? This other, obscure disorder that has maybe 3 documented cases in the US but it’s worth a shot to look in to because it just causes weakness in the feet and stops there?

I’ve noticed this is a pretty common way for people to react to a scary medical unknown. It’s curious as a coping mechanism – you feel powerless to help, so you look for answers and try to be helpful, just in case the doctor ‘forgot’ something. And I’m sure there are doctors that have overlooked everything. It’s really tempting to think that maybe it’s not this complicated, maybe I just need to take some supplements and be cured! And there’s the tiny, egotistical desire to find the problem and be the fixer! 

For example, my aunt asked me to tell my neurologist about the time I got really really sick from shellfish (on my BIRTHDAY. We rented a cabin on a really awesome bed and breakfast THAT WAS A BOAT ON THE OCEAN -fucking awesome and I was looking forward to it for WEEKS – and we checked in and then went out to a really nice lobster dinner that I didn’t even get to eat because we started with steamed clams and I won the shellfish lottery and got CRAZY SICK from one while everyone else was fine and I spent the rest of my whole amazing romantic birthday trip throwing up. FUN TIMES.). She’d read that shellfish poisoning can actually stay in your body for years and cause problems that mimic neurological disorders.

First of all, good memory, Aunt Phyllis. Second of all, way to do your research! 

All of this isn’t a rant – I’m not complaining about this at all. Far from it, actually! I am totally fascinated with this, and I’ve learned some really interesting things. There are an AMAZING amount of things that mimic symptoms of ALS. And it’s important for those I love to cope with this in their own way, and sometimes that way includes researching for that one thing that I might have that is totally curable. Something, anything that isn’t ALS. Anything to remove Godzilla’s teeth. Here, just take these vitamin D pills and it will all just…go away.

A lot of people in my life have done this, with a few really ardent researchers. Like Lance. Research is what he does, in all things. When things first started coming to light, every day he had a new wiki entry about some new disorder – and they were all about obscure disorders that get better with treatment, or some weird variant of a scary disease that is a not so scary version of it. Always something optimistic. 

I’ve told my friends and family that I am happy to forward these thoughts along to Dr. Goslin; she’s never been insulted or offended with my questions. In fact, she responded to Phyllis’ food poisoning theory with, “I don’t think you have this, but I appreciate that people are continuing to think about this.” She’s amazing.

Sometimes, it has actually been useful – my brother suggested I tell her about the genetic defect that I share with my brothers, because apparently it has been shown to have a possible link with neurological disorders. I had no idea. My neurologist is very interested in that research, and has asked me to find out which particular variety of that defect I have, because there’s like 200 of them. If I find out, and there’s a link, then I can help that research by becoming a data point. So, by all means continue. I know that it’s important for you to feel like you have some control over what’s going on, to be helpful.

And who knows, maybe you WILL find the answer and it will be simple. 

Just, please don’t be offended when I shoot down your theory with, “I’ve been through that line of reasoning, here’s what came of it.” I’ve been tested for heavy metals. At this point I’ve been tested for every damned thing missing or present in my blood. And my spine. Yes, the doctor has heard of that disorder. And that one, too. She’s a neurologist specializing in motor neuron diseases, she’s very smart.

And she has access to Wikipedia and WebMD, too.

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

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“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.

Liste du Bucquette

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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.

Care and Feeding of Your Center Circle

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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.

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

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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.