Three weeks, one day. And God knows how many times more I have to repeat this conversation:
“So what are your plans after you leave?”
“Well, for the first two weeks of vacation, I plan to sleep. I’m purposely planning to do absolutely nothing for those first two weeks. It’s going to be GLORIOUS. After that, I’m not really sure. I will probably volunteer somewhere. I will go absolutely crazy with nothing to do for too long. So I’m not sure. I’ll figure it out.”
“Well good luck to you.”
Cue uncomfortable undertones, awkward silence, shuffling to exit the conversation. In reality, here’s how I would like that conversation to go:
“So, what are you going to do after you leave?”
I mean, that is what is going to happen. That is why I’m leaving. I can no longer work because I’m going to die. But because we suck at conversations about dying and death, because our society is so uncomfortable with the mere mention of the D-WORD, in polite society I’m not allowed to say that. Even though we all know it’s true, and no shit, right? Medical retirement; I am leaving because I have a medical condition that is debilitating and ultimately, sooner than we want to admit, terminal. THIS DISEASE IS GOING TO KILL ME DEAD, IS ALREADY KILLING ME, I AM NOT LEAVING BECAUSE I WANT TO.
And so instead, I am forced to have the same inane conversation. And even though they know the real answer, the true answer, I go through the motions and come up with some stupid answer that denies my own impending mortality. I mean, what are they honestly expecting me to say? “Oh, you know, I figured I would take two weeks in the Hamptons. After that, perhaps pursue my scuba certification and do a week in the tropics. Learn a new language. Take up waterskiing maybe. Maybe learn a new vocation. Maybe finally get my baking business off the ground.”
For fucks’ sake. No. I’m going to continue to get my affairs in order, and eventually I am going to fucking die. I am going to keep losing abilities you take for granted, like feeding oneself and scratching your nose and breathing and not peeing your pants. In the meantime, I am going to continue to collect stickers, watch cartoons, and pet my cats until I can’t, and then? I am going to die.
Because ALS is a motherfucking terminal disease.
Three more weeks and one more day of this bullshit conversation replaying itself over and over. Three more weeks and one more day of pretending I’m leaving because I want to, and not because this disease is forcing me to. This has made me extra specially grateful for all of the people with whom I can actually have that frank conversation – the ones who don’t pretend not to notice that my hands are no longer working. The ones who, if they actually asked that question, I could out right tell them “die”. But they know better to ask. Because they already know. So instead they ask how my cats are doing (they’re good!), if I’ve found a house yet (not yet! The housing market in Portland sucks major ass), how well does SSI pay out (not well, but my job has awesome supplemental disability benefits)? Better, more important questions.
Death positivity kids. It’s sorely needed. I crave it like sugar and hugs. I want, I NEED to be able to have these conversations without feeling like I’m intruding on someone’s fragile psyche. Instead of what do I plan to do with my time, like it’s some summer vacation, I would rather people ask me if I have my affairs in order? (Almost!) Do I have a living will? (Yes! And a POLST form!) Do I had support I need the time I have left? (I think so!)
Three weeks and one more day. Before I can get on with the business of dying, instead of pretending like I have some plan for my future.
Because I don’t really have one, anymore.
And you know what? That’s okay. It’s normal. Not everyone gets to see 50. It sucks and it is sad, but it is normal.
Unlike this stilted-ass conversation I keep having with y’all.
Me: “Some diseases are invisible. Just because you can’t physically SEE pain, doesn’t mean it’s not there. It’s not up to you to validate someone’s disability; no one should have to prove they’re ill. There are no ADA police to determine who qualifies as disabled or not.”
Also me: “Motherfuckers buying ADA seats at theater performances should have to fucking PROVE THEY NEED THAT SEAT. I am so sick of shit selling out because some bitches with no actual mobility problems bought out the only SIX goddamned wheelchair spots in the whole fucking theater! WHAT IS YOUR MOBILITY PROBLEM, MOTHERFUCKER, THAT YOU NEED TO SIT THERE.”
….This is why, anymore, I don’t ask friends to join me at events. I don’t wanna see five mobility spots taken up by four able-bodies schmoes and me.
If the cube move happens on schedule, which I doubt, ten more in-office days.
And then two weeks of paid vacation.
The rest of my abbreviated life, I suppose. The real work begins to find the home I’m going to die in, to make it a place I can live in until that happens, and then finally – FINALLY – my immediate life can be all about just dealing with my symptoms as they come. To deal with my abilities as they go. To actually live the rest of my life until I’ve had enough.
Some not-insignificant part of me is grateful to have an Out of the workforce. It’s a forced retirement, but it’s an escape from the 9-5 capitalist bullshit that has eaten the prime years of my life. The prime of yours, too. I’ve always been a damn Liberal, but more than ever, I am seeing the absolute stupidity of the 40 hour workweek. The need to work, to justify your living with a paycheck.
And it IS a justification.
I’ve seen sneers turn into surprised respect when I tell people what I do for a living. Yeah fucker, this weird-haired, pierced and tattooed bitch has a real life respectable job that requires actual smarts. I earn more money than you, asshole, surprise.
And with the surrender of my employment comes a surrender of that piece of me, that legitimacy in the eyes of strangers that should mean fuck all and yet…it does. It really does. I wish it didn’t. I know it doesn’t mean anything, not really, but our fucking capitalist society has keyed so much of our identities into our paychecks – and who provides that paycheck – that it is going to be really hard to let that go. From being respectable to being a goddamned leech on our social security system even though I HAVE PAID INTO IT MY WHOLE WORKING LIFE, YOU ASSHOLES, I DESERVE THIS BECAUSE I PAID FOR IT AND IT IS MINE. I paid to let your grandma afford her groceries, would have paid more, gladly, as I earned more, to share what I have. That’s what social security is FOR. That’s why we have it. And yet now that it’s time to cash in, even though it will be a very limited time, I feel less than deserving. Am made by much rhetoric and many conservative motherfuckers to feel like I deserve nothing.
Believe me, fuckers, I’d rather be working instead of dying.
One more month of being valid.
Four weeks plus five days plus two weeks vacation.
One more month of being a job instead of a person.
Now that ALS has started to incorporate itself into my subconscious, more and more of my symptoms and new realities have started showing up in my dreams. I can usually still walk. My hands usually still work. ALS isn’t tied into my subconscious self on a permanent basis, yet; it hasn’t become fundamentally part of who I am in my dreams. But occasionally ALS will tiptoe into my dreams and I’ll be in a wheelchair, or I’ll have that dream where you’re trying to run but can’t, but it’s not panic inducing because …of course I can’t.
My current reality with Radicava has apparently assimilated itself into my subconscious as well. In real life, I have a port which is attached to a tube that snakes its way into my arteries. Once a month a nurse comes, and stabs a bent needle through my skin into that port, from which an IV line can be run. We attach medication to that IV line, and thus my infusions are done. Gravity plays a hefty part in this role and the flow can go both ways; we found out the hard way that if there is not medication running into the line, then blood can run out. There has been a couple of times that we’ve been a little delayed in cutting off the flow at the end of the infusion while unhooking the bag, and dark arterial blood starts running up the line. Blood is *supposed* to be able to travel up the line, it’s one of the things they look for when they first access the ports, to know that there is good flow. That’s probably because the first couple of times I’ve accidentally bled into the line he freaked out a little bit. Now we are super casual about it, because it’s honestly no big deal. We just have to push a little saline down the line to get my blood back in my body, and throw that line into the biohazard ban instead of the trash. NBD.
…It is still a little unnerving to know that if I really wasn’t paying attention and things went wrong, when the port is accessed, I could just…bleed out.
I guess my subconscious thought so too. Last night I dreamed that J was helping me with the infusion while we were in some hotel, and somehow the IV bag came off and we didn’t notice. The end of the line just spilled out into nothingness, and I had bled out over a pint before either of us noticed. In my dream J instantly went into panic mode, and started furiously trying to clean up the blood once we clamped off the line, while I assured him that a pint of blood is practically nothing, and people donated this much all the time, and I was fine. I conceded that cleanup was definitely in order, the place looked like a murder scene a little, though. I was more worried about explaining blood stains in the carpet to the people that actually owned the place.
And then the cop showed up.
Suddenly in my dream I’m explaining to a very nervous and suspicious policeman about ALS, and what it is, and what the infusions are all about, and how this was a medical mishap and is not an attempted murder, actually, despite what it looks like, while J is furiously scrubbing blood out of the carpet. I think in the end I convinced the cop that everything was okay, but J was still panicking and worried that he was going to get arrested for trying to murder me.
So yeah, apparently Radicava is normal enough to me now that it’s showing up in my subconscious dreams. That’s a new one.
Holy SHIT people are angry about straws right now.
If you’re lucky enough to be completely ignorant of what I mean, now is a GREAT time to stop reading this entry and move on with other happier aspects of your life. No one would blame you. It would probably even save you some heartburn, because damn, there are a Lot of Opinions on the Internet right now.
Quick backstory: a picture of a turtle which had ingested some plastic straws (do not Google it, it’s super sad) has gotten a lot of people up in arms and clamoring for a worldwide ban on plastic straws. Whole and complete, no exceptions. PLASTIC IS EVIL AND MUST BE ERADICATED. This is a great and noble idea, and I fully support nature conservancy and saving the planet and all of that other awesome stuff. Go Mother Earth.
The problem, of course, is that some people actually fucking NEED plastic straws.
I have read more disability erasure bullshit in the last couple of days than I have read probably in the last year. Actual sample quote: “Why is this even a question? You just pick up the glass and drink from it, how hard is it? No one actually needs a straw ever.”
…Well, Susan, you ableist piece of shit, it actually is NOT that fucking easy. Friends who have been out with me to restaurants recently can attest to this, as they have uncomfortably watched me attempt to drink from a water glass without one. With my current rate of disability, picking up a drinking vessel means clasping it between my two fists (because MY FINGERS ARE USELESS GARBAGE MEAT NOODLES) and taking a sip before placing it back on the table, hopefully without spilling or running into anything. If I can pull it off and get the glass back to the table with a simple clink of glass on ceramic plate, I’ve done well. But that’s becoming impossible. FUN SCIENCE FACT: WATER IS HEAVY.
…I need a goddamn straw.
I currently carry around paper straws, for these instances. They’re still pretty wasteful, but it’s a compromise. Carrying around a reusable one is not practical, because I can’t operate fiddly little brushes or squeegees to clean the thing when I’m done with it, necessitating me to carry a sticky dirty straw in my purse until I can get home and ask someone to run it through a dishwasher for me. In a life already fraught with humiliating reliance on other people’s kindness for the simplest dumb stuff, and existing as an increasing imposition on others, a reusable straw is just one more fucking thing to have to ask people to take care of on my behalf. Paper straws are a concession to my disability and a temporary compromise for conservation.
I actually use a lot of disposable things, and feel ashamed for every fucking one. My liberal snowflake heart cringes every time I do, but using paper plates means I can actually lift the thing without spilling food all over my lap because ceramic is too heavy. Using a paper cup means a condensation-slick glass is not going to fall out of my hands and soak my bed when I try to quench my thirst. My hands don’t work well enough to clean out the cat food tin, so it goes in the trash. Every item disposed of makes me feel incredibly guilty, but these are things I have to do now. I don’t have the privilege of washing dishes anymore, or making my life more difficult in the name of reduce, recycle, reuse. It is an inconvenience to you, and a Major Fucking Undertaking to me. And I know in my heart that this is completely understandable, these are sacrifices ALS has demanded of me, and in the grand scheme of things, the amount of trash I accumulate is really not that big a deal.
Not to hear Susan tell it though. I am single-handedly raping the planet because I need a plastic bendy straw.
There’s an awesome chart going around on the Internet right now, and I’ve had the occasion to share it many, many times over the last few days. I’ll share it here, too, because it’s goddamn useful and I am tired of explaining why Product X is not a universally viable alternative to a disposable bendy plastic drinking straw. Observe:
Currently, I have the luxury of getting away with paper straws. Keyword here: LUXURY. Soon though, soon that will not be an option. The day is coming when I’m only able to slightly turn my head to the side to get a sip of water. Eventually, not even that. I will not be able to lift my body and position myself above a cup with a straw sticking straight up out of it in order to hydrate myself. I need that stupid little bendy thing, that corrugation that makes it almost impossible to make out of any material but plastic and makes cleaning a major undertaking instead of a quick rinse in soapy water. I need the straw to be positionable, and I don’t have a devoted full-time staff who are able to hold a cup to my lips in order to hydrate myself, or constantly wash my dishes, and all of the other things that you don’t even really think about. Because you’re not disabled and you don’t have to.
But I think about them. Because I have to.
I’m learning new things all the time, myself. Before the above chart, straws as a choking hazard didn’t really even occur to me, but now that I think about it, of course they are. Of course putting a rigid thing between your teeth is an injury hazard when your jaw suffers spasticity and clamps down for no reason. Of course temperature tolerance is going to be a concern, when you are relegated to an all liquid diet and not just sipping cool drinks or refreshments. These seemingly no-brainer ideas are new to me, even.
So I’m simply asking that maybe you pause and think about these things too, before you go off on me and people like me who actually need the fucking things. Understand that the ability to do without straws completely is a luxury. Understand there is no simple answer to the horrible problem of plastic waste. Understand that consumer waste is a tiny fucking fraction of this problem, and huge corporations need to be held much more accountable for their part. As the chart says, the burden of a solution should not rest upon this shoulders of the disabled. We are the victims of this problem, not the fucking perpetrators.
Someone who thought they were being clever asked what people did before the invention of straws then, if they are so necessary? Medical professionals answered bluntly: people aspirated liquids, got pneumonia, and died. Plastic straws are LITERAL FUCKING LIFESAVING MEDICAL DEVICES.
So Susan, I’m extremely happy for you that your reusable plastic cup and rigid ass plastic straw is a viable option. For you. Captain Planet would be really fucking proud of you. Go ahead and wear that gold star. Just please recognize that other people on this planet exist, and that your solutions are not perfect ones. Recognize them for what they are. A good idea. A place to start. The beginning of the necessary conversation.
And understand you’re not taking my plastic bendy straws away from me until I’m dead. You can quite literally have them over my dead body.
Ohh MAN my friends had some salty words about my last post. I love you bitter people. Your Machiavellian minds delight me.
The best suggestion was to go ahead and make reservations somewhere and then just not show up. Instead? I have devised a better, a saltier plan. You guys want guilt? You want to play the emotional blackmail game? FINE.
Here’s the invite to my official retirement party:
I have about 9 weeks of work left (7 weeks of actual work and then 2 weeks vacation). Until that time is over, I can’t exactly be as candid about work as I’d like in certain situations, and be public and honest about all the reasons I’m very, very, very glad to be leaving. Dumbass CEOs firing 10% of the global workforce to please the shareholders, lecturing his employees about business ethics and integrity after getting busted doing insider trading, and THEN getting caught having an affair with an underling aside. (Bye, Felicia)
I can tell you, though, that I’m really, really glad to be leaving my particular job. I’ll miss the idea of work, the regularity, the sense of being needed, and a lot of the coworkers that I’m leaving behind, but I’m very glad that an end is in sight to my working career. Frankly, the job’s become kind of a piece of shit lately and the universe is telling me it’s time to be gone.
Perfect case in point, my manager asked what I would like to do as a goodbye celebration. I told him I wasn’t sure I even wanted to HAVE one, since I’m not exactly leaving for very happy reasons, and I really don’t want to be around a bunch of people crying or looking at me with pity for a couple hours, or talking about literally anything else. Not my idea of a good time. I kind of just… want to sneak out the back. Coworkers that I had personal attachments to had their chance last year to say goodbye at my wake. He said that was fine, but I should know there were lots of people who wanted a chance to say goodbye after almost ten years of working with me, and if I did not want to a going away thing, then that was my choice, but I needed to let him know so that he could inform me coworkers in Arizona that if they want to say goodbye they would have to make their own arrangements.
I flat out told him that was emotional blackmail. But I conceded that a going away thing wasn’t about me at all and I would think about it. He told me to pick a time and a place and let him know when I’d made arrangements.
…The FUCK I am going to plan my own going away party.
It’s already shitty that for almost the last 10 years, I’ve been performing the team’s emotional labor on my own (practically. James was really good at picking up some of it and made a point of not treating me like a fucking admin, while he was on our team). I am not going to plan, organize, and make reservations for a party – for MYSELF – that I don’t even want. I’ve been sending flowers for every, birth, wedding, and death in my team. I got nothing when my father died. …because I wasn’t there to send *myself* flowers.
It’s definitely time to go. If I weren’t leaving the team, the company, the workforce as a whole, I’d sure as shit be leaving this particular team anyway. Probably the company. We ceased giving a shit about each other a long time ago. That really sucks, because I miss the team we used to be. The team that hung out after work together for Beer Tuesdays and invited me even though I think beer is gross. The team that genuinely gave a shit about each other and had fun even when the work itself sucked so much ass. I miss that camaraderie.
The old team sure as fuck would not have told me to throw my own goddamned retirement party.
holy fuck I can’t believe I just sent this. I have officially given notice to my job, and will cease working on August 31st.
With regards to my unfortunate medical difficulties, we’ve previously discussed potential timelines for my final day at Intel, with loose plans being made. I promised you a final answer pending my clinic appointment on the 18th of June. Given my current rate of decline, and my remaining quality of life, I’d like to officially submit my final day with Intel to be September 16th, 2018. It will be my 10th anniversary at Intel, and seems a good time to go.
I have vacation days I’d like to use before then, so with your permission I’d have my last working day to be August 31st, with medical leave to begin Monday, September 17th (WW38.1). Our cube renovations will have begun by then, so my final in office date would be August 22nd (WW34.3), office visits to return equipment notwithstanding.
As you might imagine, this is not at all an easy decision. I will do my very best to document and transfer every scrap of knowledge I’ve gathered in my time here, and to hopefully train my replacement in the next ten weeks. It has truly been a pleasure to work at Intel, and I am genuinely sorry to end my career – for reasons above and beyond the obvious. Please accept my thanks for your guidance, and my eager assistance in making the transition as painless as possible for you and (team).
I was told twice yesterday that I had been unkind. Once about a caustic post I’d made that I didn’t realize had such a caustic tone, which I didn’t intend at all. Once about letting in-character anger spill over into an out-of character moment during a game.
It’s fucking with me more than I want to admit out loud.
I want to think I’m patient and a nice person. I want to BE a kind and soft person. With swearing as needed. I also want to think I can take constructive criticism. Both times, I tried to take the information in with a whole mind and open heart. I freely accepted valid points, admitted areas of ignorance – I genuinely did not realize my irritation with a sub-group of people spilled over into a perception of complete disdain and impatience for a related whole category of people. I vowed to be more aware, and work on it, and thanked them for bringing it to me. It’s a brave thing, to tell a friend they’re being a bit of a bitch.
But it’s fucking with me.
I don’t want to be unkind. It bothers me that someone would think I am. It bothers me that I speak without careful consideration, to have words and actions misconstrued.
So I lie awake until 3AM mulling over every interaction I had that day, wondering who else thought I was being a bitch, and what I can do to make amends. Usually these criticisms are self-inflicted, so coming from an external source, that knows me well, is especially jarring.
Before I moved away from Sacramento, several friends told me later, I became a bit of a bitch. My joking a little too caustic. I wondered if it were a subconscious self-defense mechanism, distancing myself from people I cared about in an effort to make it less shitty to leave.
I’m terrified of doing that same thing, knowing that I’m dying. From Diagnosis Day I have been fearful of being that embittered person in a wheelchair, lashing out at loved ones because I’m afraid to leave them. To be remembered as a total and complete bitch at the end of my days, in an effort to somehow distance myself from them so that the parting will be easier. Knowing it won’t help a goddamned bit. I do not wish to be a caustic person with nasty words where my love should be.
I’m glad my unkindness was called out. I’m glad I have time to work on it.
But until I am nothing but kind, it’s gonna fuck with me.
My ALS Clinic team is getting a new doctor. Dr. Goslin called me and said they were putting together a newsletter to welcome him, and asked if I would write something about my experiences with the clinic. “Hopefully positive,” she said, and she needn’t have worried. I told her I’d be delighted. This is what I wrote.
It is not hyperbolic to state that ALS is one of the worst things that can happen to someone. Second perhaps only to Alzheimer’s disease in the completely undignified and terrifying way it kills, a diagnosis of ALS is absolutely devastating. It is also not hyperbolic to state that one of the best weapons against the ravages of this disease is the multidisciplinary ALS clinic. I personally cannot imagine going through this disease without my care team. A dedicated team of experts coming together to get the big picture and provide not only treatment, but expectations and support, is a luxury very few people are ever gifted with.
The ALS clinic makes the journey not only better, but perhaps even possible at all. Scheduling so many appointments with so many separate providers would become a job in itself; a Herculean task when one is already exhausted from just continuing to be alive. One day every three months for a four hour whirlwind tour of health is a tremendous relief of burden, even without considering the travel times. In addition to the vast benefit of freed time and effort, the end-of-day consultation when the whole team comes together to talk about me as a whole and complete person, instead of a series of interesting little snippets, provides for a much better plan of attack. A completely holistic and complete picture of me as a person with ALS, instead of a case file of how ALS is affecting Patient X with regards to diet/respiratory/insert-your-favorite-discipline-here. It is so much better for the patient when doctors talk to each other – who knew?
ALS affects each person differently, and we collectively know so little about it that research on one’s own is almost pointless. It’s only through the collective care and knowledge of the team at Providence that I’ve been able to get a grasp on my disease at all. Every question I ask is answered, every minor complaint met with compassion and understanding, and above it all, the concern I’m given is genuine. I’ve never had such a beautiful working relationship with medical professionals before. The care and compassion of this clinic’s providers are one of the greatest tools a person with ALS could ever hope to have; a wonderful consolation prize.
If ALS is a Pandora’s box of symptoms and troubles, then the ALS clinic is the remaining hope. I’m wholly grateful for this resource. I literally could not do this without it.
Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.
I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.
My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.
For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.
But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.
Because fuck that shit.
Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.
My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.
We’ve forgotten how to die. We’ve forgotten how to be dying, and how to comfort. How to be okay when things are definitely Not OK.
We’ve lost the ability to not be absolute shitheads to each other by accident or ignorance when something terrible happens.
In my adventures with dying, I’ve accumulated quite a wealth of pretty words and useful words on the subject of death, dying, and grief. I’ve always meant to catalog and share them. When a friend who’d lost their mother was told today that she’s going to hell because she refuses to just leave her grief up to God and put on a happy face, I kiiiiiinda lost my shit. And knew the time to publish this is NOW.
Spoiler alert: I don’t really like children. I’ve never wanted them, I don’t generally like being around them, they are messy and loud and completely irrational and they trigger my social anxiety like woah.
Disclaimer aside: I fucking love how brutally honest and open children are.
They can, as Fred Rogers said, spot a phony a mile away, and they will call it exactly as they see it. And a quality I’ve come to adore: they will ask questions. Adults will stare and make a point of NOT staring, and talk about anything BUT what they want to ask, and dodge the subject so thoroughly you’d think it was a game everyone is playing but you. Don’t Mention the Wheelchair, the worst party game ever.
But kids? Kids will come out and ask and feel no shame, and it’s refreshing as hell.
We went to dinner tonight, at a place with a LOOOOOOT of stairs. There’s a secret elevator entrance way in the back, but you have to have a host/hostess escort you because it’s seriously a maze and you have to go through a business building’s security desk. So tonight, when J wheeled me to the front counter to await seating, it was understandably baffling to a little girl how someone in a wheelchair was going to get up all the stairs she’d had to navigate to get in.
She couldn’t have been older than four. Adorable little thing in sparkly shoes and pigtails, and she turned to her mother when she saw me rolling up. Asking in that louder-than-normal-voice-whisper that kids have, she asked, “How’s she gonna get up here?”
To her credit, her mom was unembarrassed and handled the question honestly. “She’s not.”
“There’s a back way,” I told her.
The girl asked her mom, “Why’s she in the chair?”
“I don’t know,” her mom answered. To my delight, she did NOT try to hush the child up or make a big deal about it. When parents try to silence their kids’ questions, it feels like I’m some sort of shameful thing that has to be swept under the carpet. And hey guess what, when you skirt the issue? You pique the kid’s interest. Oh I’m NOT supposed to talk about this? GUESS WHAT WILL BE OUR TOPIC OF CHOICE TONIGHT. I *can’t* say those words? Well then BUTTS BUTTS BUTTS FART DOODY oh hi Grandma! Today I learned FARTS!
The child then, sensibly, turned to me. “Why are you in that chair?”
“My legs don’t work,” I told her honestly.
“How come your legs don’t work?”
“I have a disease. It makes them very weak. I’m not very strong anymore.”
“Oh.” She considered this new information, and then very logically continued, “well *I* am.”
“I can see that! You look very, very strong.”
And she flexed her little arms for me, beyond proud.
And that was the end of that. We shifted the topic to her shoes, which were very sparkly and lit up when she stomped, and she danced her own little disco until our table was ready and I was wheeled away. Hopefully, she will retain that honesty and people in wheelchairs will remain something normal, to have frank discussions about, and hopefully her parents continue to raise her well and when the answer is “I don’t want to tell you why I’m in this chair” or “It’s private why I only have one eye”, both parties deal with it with grace.
I see it as a continuation of all the conversations I’ve had with children, “Why is there earrings in your nose” or “how come you got purple hair” or “why did you draw all over your skin forever”. I enjoy those conversations because of their complete lack of judgement, their total curiosity. Not, “ewww you are weird and that’s bad” just “why are you different?” It’s an honest, open conversation and the world needs more of that.
So that’s the story of a completely charming child I spoke to last Sunday.
So uhhh I have my port installed. It was …an adventure. Lemme tell you all about it!
When last we left our intrepid heroine, she had a really nasty reaction to the adhesives on her PICC line dressing. We moved to a different type of dressing that didn’t adhere for shit. The day I was done with the 14 day initial run, my awesome home infusion nurse came by to change the bandaging. She recommended we get the PICC pulled ASAP so I could get the dang adhesives off my skin.
It took a little convincing to get the nurse to refer me for a port; she was concerned that if I had a reaction to the adhesive as it was, having a port would be just as bad. I was concerned about not having tubes sticking out of me at all times; at least the port would give me a 2 week break every month. We eventually secured the referral, and my surgery was scheduled for 12:30 on December 27th, with a separate appointment that morning at 8:30 to get the PICC removed. When I told my home infusion nurse, she arranged to come by that evening (after her company holiday party, even!) to pull the PICC so we could get the wrappings off me and let my skin recover a bit. We love Deena, she’s rad. It was surreal to see her pull the line…it kind just kept coming out, like a magician’s scarf of surgery and horror. It was MUCH longer than I’d thought. And it was friggin’ DELIGHTFUL to have all that out/off. And the shower I was finally able to take was goddamned MAGICAL.
I received a call from St. Vincent’s hospital the next day – the surgeon I’d been scheduled with wasn’t actually going to work that week, could I go to Providence Portland instead? At 9:30am? Sure, no problem. The next day, they called again – sorry, could we make it same time, but back at St. Vincent’s after all? No problem. J worked that day, so I asked my sister-in-law-of awesomeness Jeanette to be my ride.
And then I made a terrible mistake.
OK so I’m a smart person, and with intelligence comes curiosity, and I wanted to know exactly what I was in for with this port. I watched a video of a woman demonstrrating how to access a port; no big deal, kind of persnickety with regards to keeping everything absolutely sterile, but whatevs. And thennnnnnnnnnn I watched a video of a port install surgery. OK, I am not really squicked out by surgery, and I found the whole thing fascinating until the phrase “BLUNT DISSECTION” came up, and the surgeon LITERALLY TORE A HOLE IN THE PERSON BY JAMMING HIS PINKY IN THE INCISION AND WIGGLING IT AROUND. HOLY FUCKBALLS. My brain went NOPE, FUCK THAT, FUCK THIS, AND FUCK YOU FOR SCHEDULING THIS MOTHEFUCKING MEDIEVAL-ASS SHIT. Intellectually I knew it was fine – MORE than fine, because I was gonna be hopped up on Versed and remember NONE of it and get some good drugs afterwards – but the actual crux of the mistake had been watching this video righe before bedtime, so my brain just did donuts in the parking lot for awhile.
The morning of the surgery, I got a call from the hospital – would I mind coming in early? It was 8:30 and I was scheduled to check-in at 9:30, so I was a bit confused, but I told them I’d be there as soon as I could. We parked too far away and I was a sweaty mess when we arrived at check-in, where I was told…I was scheduled at the OTHER hospital, still. I explained the conversations, they luckily sorted it out. I went upstairs, put the goofy little gown on, and waited. The nurses came in, partly to take vitals and start an IV and make sure I wasn’t pregnant, and partly to play peek-a-boo with my adorable niece. The doctor came in to introduce himself and ask if I had questions. he was delighted that I referred to the Huber needle I’d be using to access the port as “the crooked needle”. I was delighted by his use of the phrase “twilight sleep” to describe the conscious sedation I’d be under. They’d give me benadryl in my line along with the sedatives and a dose of antibiotic, he said, hopefully I’d just sleep through the whole thing.
I remember them wheeling me into the surgery, and seeing the GINORMOUS fucking monitor he’d be using to make sure he was placing the port properly, with x-ray. It was weird to see my name there. The several nurses had their A-Game banter going, and we were having a great time explaining names and tattoos to each other. One nurse thought I had an accent, and asked how long I’d been a Yankee. “My whole life?” A male nurse/technician/whathaveya scrubbed me down with a blue solution, making me the world’s least convincing Smurf. I was freaking cold, despite the warmed blanket they’d put over me. The IV nurse told me he was putting the antibiotics in my line now, and I felt the cold sting. he told me he was starting the sedative now, and then I…
I do not remember a thing after that.
I woke up with a very large image of my x-ray on the monitor, showing the line running into my artery. I was shivering. They wheeled me back to the recovery room, and I slept a bit. Jeanette had taken my niece Jewel to get some lunch or something. They brought me a turkey sandwich, which I devoured. They had put the dressing on a bit shitty; I couldn’t raise my head all the way, or turn my head much because of the way my skin was taped up. It itched a bit. I was given discharge instructions and no pain killers (“Just take some Tylenol”). My sister came back, I got dressed, she took me home, and I slept some more.
The next morning I was aware something was up. I was naughty and pulled the dressing off a bit to allow myself the ability to raise my fucking head, and where the dressing had been tugging was now an angry red wound. I was very itchy. All over my chest. Angry red hives, all over my chest, up my neck, and across my chin. Tylenol, it turned out, did not fucking suffice, so I took some of the hydrocodone I had leftover from breaking my ankle that the doctor hadn’t wanted to give me either because ibuprofin should be fine. YOU JUST TORE A HOLE IN ME BIG ENOUGH FOR A 1 INCH SQUARE MEDICAL DEVICE AND ALSO CUT MY NECK TO SHOVE WIRES INTO MY VEINS – NEWSFUCKINGFLASH TYLENOL AND IBUPROFIN ARE NOT SUFFICIENT FOR THIS. BLUNT. DISSECTION. BITCHES. I slept some more. I woke up to even angrier hives, annnnnnnnnd my eye was a swollen bag of fluid.
So uh…yeah. I was having an allergic reaction to something. It couldn’t be the dressing itself, since the hives were everywhere. It got worse and itchier over the night. I had a different IV home nurse visit that day, to change the bandage since they’d thoughtfully left a needle in the port for me to start the infusions, but I’d bled a bit so there was gauze under the dressing which needed to go. She was very concerned about the reaction, namely that it might be a reaction to the port itself. My delightful friend Lizzie was coming over that day with delicious food for me, and she kindly picked up some Benadryl on her way in. Luckily I had a doctor’s appointment already scheduled for the next day, for an unrelated issue and holy FUCK will I rant about that in a bit. I took Benadryl, ate delicious home made food, and slept a lot.
My PCP is a cool guy, and didn’t mind dealing with the reaction as well as the initial problem we were scheduled to deal with. He suggested two more antihistamines in addition to the Benadryl, and to contact the hospital if it didn’t clear up by Tuesday (Monday was New Year’s). Luckily it did, mostly. I think the problem was the smurf shit they scrubbed me down with, since the hives pretty much appeared everywhere they used it. I have no explanation for my eye becoming a blister, tho.
We’ve now completed the second round of infusions, the port works beautifully, and we pulled the needle out last night. I am once again dressing-free for two weeks. The scar is already nearly healed up, and the itching has almost entirely subsided now that I’ve got no more adhesives on me. I can feel the port under my skin, and it’s weird.
You already knew this. Probably. Almost definitely. If not, welcome to me; I’m a giant nerd.
Most every Wednesday, I play a table top role-playing game with a group of guys that have become good friends. We are virtual murder hobos, adventuring and killing monsters and arguing amongst ourselves about which monsters need killing, and it’s a lot of fun. I absolutely adore the group. The only hitch at all is that my stupid disease gets in the way a lot – I’ve had to miss a lot of games because of appointments, or a couple of times I’ve fallen and hurt myself, or sometimes my mana is just too damn low to deal, or once or twice Sadbrain said nope. Luckily, they’re very cool about me missing games; they understand. We had a talk once to just make sure that it wasn’t that I was not enjoying the game but was too polite to say so, so I was making excuses; once they were assured that I absolutely enjoyed the game but my disease is stupid, we were all good.
Part of that hitch is getting to the place we game. It used to be at the storyteller’s house, which had two steps and no rail. It was…not fun getting inside. Luckily before that became an impossibility, we switched to another player’s house, which has just one step. Much easier. Still an effort, and some days a Herculean one, but better. This last Wednesday, I had low energy, and I sarcastically complained to J as we were heading over, “Tim needs to get a fucking ramp.” If J didn’t drive a little car, I’d probably have bought one of those portable ramps to just carry around with us for these occasions. It would definitely make things easier. I’d never actually expect someone to modify their home for me, obviously. But some days it probably would be the final straw in deciding if I had the energy to go to to game or not. Stupid disease.
We pulled up to the house, and everyone was standing around outside, which was…odd, because it was cold as hell. We usually start game at 5:30, but we were told tonight was a late start, so maybe everyone had just gotten there. I got out of the car, and they all kind off…turned to face me. Matt, the storyteller, told me that they all understood that I had hella circumstances and that it made it really hard for me to get to game sometimes. For a moment, I thought, “OH shit, they’re kicking me out of game because I’m unreliable. Well, I can’t really blame them.” He continued to say that they really appreciated the effort I made to show up, and that they all wanted to make sure that I’m able to continue doing it for as long as I can, so…they all parted to show me something behind them.
THEY BOUGHT ME A FUCKING RAMP.
To get in to the house. A ramp. For me. And they even put stickers all over it.
One of the worst things about acquiring a disability is feeling like you’re a burden. Your friends and family have to make plans around your diminished abilities, suddenly old traditions have to be abandoned. Even though everyone insists – INSISTS – that you’re fine, they want you there, they’re happy to make the changes, you can’t help feel guilty that they’re missing out on cool things because of you. A lifetime of Sadbrain convincing me that I’m not worth the effort in the first place does not help the matter, and I’ve worked my whole life to make that voice be silent, with very mixed results. In the meantime, events are missed, changes are made, things are rearranged, and my friends and family do their best to accommodate me and tell me it’s alright.
Funny word, accommodate.
It can mean providing sufficient living space, or making a compromise, or adjusting to something new. It means somehow going out of your way for someone. In my world it’s usually got a slightly cynical sister word attached, “reasonable”, when dealing with work and places of business. Reasonable accommodation. Legally doing the absolute bare minimum in order to convince ADA enforcement laws that you’ve done …something. (I’m a little bitter, yes)
When it’s your friends, though, and you know they sure as shit didn’t HAVE to do anything, that they made an effort because they legitimately want you around, and here is absolute proof? Yeah I totally teared up. It was an amazing thing. A selfless thing. An important thing.
It makes dealing with it easier. It makes being alive easier.
Good thing we’re gonna go ahead and do the port; when the dressing was swapped out Thursday, my skin was all KINDS of pissed off. I was pretty sure I was having at least a mild reaction to the adhesive, because surely it shouldn’t be THAT itchy? Apparently no. It should not.
Soo we are trying a different adhesive that doesn’t adhere as well, I’m finding, and we will hopefully get the port installed soon.
So! Today is the last day of the first run of Radicava. I’m confident at this point that any side effects are tolerable, and I want to continue. The only potential things I’ve noticed is that there MAY be an uptick in the frequency/severity of my headaches, but it’s nothing I can’t tolerate, and there’s been a few times when there’s been a weird panick-attacky feeling, where my heart is beating in my throat, but that always goes away. Labs will be drawn to make sure I’m not experiencing anything serious, of course, but my own internal feeling is that everything’s GO for continuing.
Whether this is even doing any good, I won’t know until March, the next Clinic Day. But it’s not hurting anything, so we’ll keep it going. This also means I’ve asked to go ahead with the port install. It will be a vast relief to no longer have these tubes coming out of my arm that need babying, not least of which is because the adhesives that protect the PICC line itch like a MOFO.
Since my fall last Tuesday, I’ve noticed my hip hurting a bit, one spot particularly. I kept expecting a bruise to form, but it never did. Two nights ago, I was pushing on the spot, to figure out exactly where it hurt, and my fingers found a hard lump that rolled around a bit under my skin at the joint. And I remembered wayyyyyyyyyyy back at the beginning of my Godzilla Disease diagnosis attempts, how we initially thought the problem was in my hip, and then I got an MRI, and the MRI showed a small tumor thing in my hip meat. It was deemed medically uninteresting, though, and ruled out as the cause of my woes. I was told that it had probably been there, like, forever, and wouldn’t be a problem, but maybe keep an eye one things and recheck it in a few years.
I guess, yeah, it’s been a few years, so it’s time to get the dang thing rechecked. So THAT will be fun, as I can’t really get up into MRI machines these days. I’ll make an appointment soon. One more damn thing. I’m sure it’s fine, but dang, man.
I’ll let you all know when I get the port installed. 😀
It was the urology follow up, and the day began with a clear reminder of why the appointment was needed, followed by massively uncomfortable prep, and then the Lyft ride to the hospital. I was half an hour early, thankyewverymuch. Once inside, I don’t even know exactly what happened, only that my walker was moving faster than I was, and I didn’t have the strength to pull it back under me, and suddenly I was kneeling on the ground. Two older men noticed my plight, and asked if I needed help.
“Yes please?” The question mark was because I had serious doubts these two were going to be able to get me off the ground. Doubts well founded. They were not. A third, younger man assisted and we finally got me seated on the walker. They all left with my profuse, if a little breathless thanks. I wasn’t hurt at all. After catching my breath, I stood a little shakily (yay adrenaline!) and made my way to the urologist, who has a very heavy office door. A gentleman inside noticed I was having a hard time pushing the door open, and opened it for me.
…Only I was leaning on the door knob at the time. With my support pulled away from me, I lost my balance and landed on my back in the hallway.
Please ask if someone needs help before ‘accommodating’ them? This is the first time it’s actually caused a fall, but I’ve NEARLY been pushed or pulled off balance many times by someone trying to help. Please offer to help, but wait until I am aware of you and ready before doing the thing. Thanks.
I was surrounded by noisy, concerned people, including the really bitchy admin from last time who was actually quite sweet this time. One of the people who helped me up this time was one of the same older gentlemen from before. “If I’d known you were coming here, I’d have waited with you.” We got me seated again, and I was left to rest in the lobby, blissfully left to my own devices once everyone was sure I was OK.
The appointment itself was…uncomfortable. All sorts of probes and wires were inserted or otherwise attached, then my bladder was filled and i was instructed to bear down. Nothing leaked, which in retrospect was hardly a surprise because it’s only when I get UP that problems happen, but I didn’t have the presence of mind to point that out. The wires were disconnected, the doctor came in and looked at my results, and…instructed me to pee more often.
That’s her whole plan. Just get up every three hours and pee, maybe you won’t leak. Oh and keep doing those Kegels with muscles you no longer possess. She clearly does not speak ALS.
I left angry and frustrated, and took a Lyft home, only to find Amazon had delivered a package while I was gone. Right in front of my door. My case of Monster. My very heavy 24 count case of 20 ounce cans, right in front of the door. Annnnnnnnnnnd in trying to move it enough to get inside the door, I uh..yeah I fell again. Badly this time. Pain shot through my previously damaged knee and my freakin’ ankle that was broken. My mom, alerted by the noise of the fall (but not the swearing, oddly enough, she didn’t hear me yell), came out to try to help, but there wasn’t anything she could really do. Once I caught my breath and got my legs out from under me, I was able to shove the Amazon box out of my way and crawl inside. It was good to have my mom there this time; even though she could in no way help me up, she was able to get the walker out of my way and put our stepstool by my bed so I could use it to haul myself up.
Thank God I had taken an ativan that morning before leaving, or I’d have been a blubbery mess. As it was, I took a well deserved nap and was pretty sadbrained the rest of the day. Yesterday I was pretty dang sore all over and worked from home. Landing on your ass three times in 2 hours takes it out of a girl.
BUT! Yesterday was also the completion of my first week of Radicava! I think it’s going well. It maaaaaaayyyyyyyy be exacerbating my headaches though; I’m keeping an eye on it. It’s been an eventful and stressy week, so hopefully the coming one is kinder and a more useful baseline. I won’t know really if the meds are helping anything until March, the next Clinic day. I’m committed to keeping it going at least until then.
So now you’re up to date, and I’m gonna go play on the internet. <3