Sorry about that.
I love you.
Thank you.
Vashti L. Ross died the morning of July 11, 2023 due to complications from ALS.
To learn more about her journey with this insidious disease, please keep reading, or see https://alsoregon.org/vashti-ross/.
If you would like to help with her final expenses, please visit https://www.gofundme.com/pruzh-dying-is-expensive.
I’ve been Officially Sick for seven years now. Two years longer than the outside average life expectancy, and still doing really well, all things properly considered. Yet, for some reason, this year’s Saddiversary was really, really hard.
Like. Really fucking hard.
A solid week leading up to the actual date saw me in a total despondent state. True and proper depressive episode, sleeping and crying a lot, medicating the living shit out of myself, unable to find joy in anything, looking desperately to climb out and get just a little happy again. The tiniest bit. Anything. Please.
I imagined myself in a room. Depression Land. It’s very much like my actual room, only greatly exaggerated. The bed takes up most of it, and has shackles. I spend over 80 percent of my time in this bed. This last week I had to ask J to help me medicate the skin on my ass where it is threatening to become bedsores. Bedsores caused by sedentary lifestyle fed by depression and then feeding back into it. The bed is my world. There’s a bright spot here, a pulsing lifeline that is my laptop, my connection and my distraction and my salvation. It’s a dim light, during these episodes, the barest of dim glows, but it’s still there. There’s a bed caddy with the remote controls for my tv and my bed, my phone, and my drink. (Holy shit am I going to miss drinking soda. I will hold on to the ritual of my morning Monster energy drink for as long as I can. SODA IS AWESOME OKAY) In Depression Land, it tastes like nothing. There’s piles of blankets here but they don’t keep me warm. They entangle, instead, and stifle.
There’s a pile of luggage in the corner. It’s a matching set, poison green with little corona viruses all over them. They smell like dust and bitterness, and they represent all the things I missed out on because of the corona virus. One whole year of my extremely limited life, with my rapidly diminishing ability, gone to this fucking virus. There are twin suitcases here labeled “Portland Dining Month”. One nice sized one labeled ‘Saddiversary celebration in San Francisco with J’. One labeled ‘birthday 2020’. Six or seven labeled with various concerts and show names. There’s also a pile of cardboard boxes, hastily marked with Sharpie, “Help moving”. That one smells especially bitter.
The bitter aroma also extends to my wheelchair, relegated to a role as bathroom taxi and doctor appointment shuttle. In Depression Land, the SS Opportunity is covered in mildew and cobwebs. It never gets to go anywhere fun. She’s not my freedom, here; there’s nowhere to go. In Depression Land, this glorious machine is nothing but a tool, and a laborious one at that.
My closet, too, is mildewed. All my cute clothes relegated to the darkeness because WHAT EVEN IS THE POINT.
Books, turning to dust, snacks, tasting like ashes.
I fucking hate Depression Land.
The only good thing about it is, I know my stay is temporary. Even if it doesn’t feel like it. I’m usually able to remind myself of that, when I’m desperately scrolling through Amazon looking for some stupid little tchochke that will make me happy for five minutes or trawling the depths of TikTok to find something, ANYTHING..
Eventually, I remember.
Or in this case, eventually, the day comes and goes.
I’ve been flying a lot lately to San Francisco for a medical trial. Most people, when I tell them that, inherently all understand that traveling is a bit difficult when you’re in a wheelchair – but I don’t think they quite understand exactly how complicated it is. And there’s no way for you to know unless I tell you. So! here’s what it’s like to fly when you’re in a power chair! (standard disclaimer, this is what it’s like for ME, your mileage may vary, put on your own oxygen mask before assisting others.)
I’m very lucky in that this study is paying for all of my travel. Luckily I don’t have to do with the expense – I’m not PAYING to go through all this nonsense. I’m also extremely fortunate that my local chapter of the ALS Association is loaning me a power chair specifically for travel. The airline has managed to damage two wheelchairs so far. The manual chair I was using had one of its brakes completely bent to un-usability, and the power chair had a knob completely sheared off that controls the headrest position. Fortunately in both cases the airline resolved the problem and everything was very cool in the end (they bought a new manual chair, and sent out a tech to my home to fix the headrest). It sucks to have to deal with, but I seriously thank the ALS Association for the loaners, thus preventing the damage happening to my own personal chair. If the S.S. Opportunity got broken, I’d lose my mind.
So! On to the airport!
Phase 1 – Security
The two airports I have to deal with, and I imagine every other airport, have a priority lane for people with disabilities. It’s like the ONE saving grace in all this nonsense. It’s usually my brother going with me, so he and I go through the short lane together. Shorter waits to get to the long wait at the luggage scanners. In the San Francisco airport, the priority lane is marked off with ropes on bases that are inevitably placed too closely together, making the lane much too narrow, so Gecko has to adjust them or I run them over. We show our IDs and boarding passes and get in line for security. My brother is a pro at getting all of our stuff on the belts by now. I don’t bother taking my boots off anymore, but I do have to surrender my shark purse and my hoodie and all that fun stuff. We let the security screener know that I’m going to need someone to check me through, as I’m not able to get out of the chair. The security screener shouts FEMALE ASSIST!! the first of several times. Usually, they point out that I have forgotten the bag hanging on the side of my chair and will need to put it on the belt, please. I politely explain that it is a catheter bag and thus attached to me so I will be unable to do so. Occasionally they take this news very gracefully, but usually they get flustered and mumble an apology and bark FEMALE ASSIST!! another time to change the subject.
Gecko stays with our stuff as it goes through, and I wait on the side for my FEMALE ASSIST!! to show up. There’s no good place to park a wheelchair in a security lane, so I’m often just kinda…there, while other people mill around, unsure if I’m in line. I’d like to live in their reality, where it’s possible for a power chair to fit through a body scanner. When a FEMALE ASSIST! eventually shows up, often she will point out that I have neglected the bag on the side of the wheelchair, I again explain that it is catheter bag and thus attached to me, and I’d be delighted to put it through if I could. And for some reason the FEMALE ASSIST!! are usually much more graceful about this information. Sometimes an apology, usually just an oh okay, and we get on with our lives. Life lesson: women seem generally much cooler about pee bags, in general. I’m led to the back, where everyone else is putting their shoes back on and getting their stuff together, and brought to a little table with a chemical sniffer on it. From here, the officer goes into robot mode. She is very obviously going through a mental checklist and script. She asks if I am comfortable being screened here, or would I like a more private area. Usually – usually! – what’s to come is not too terribly exposing, so I always opt to go ahead and do the scan where we are. She explains very carefully everything that she is about to do, where she is going to touch me and how she is going to do so. Up and down the arms, along the back, between and under my breasts with the backs of her hands, etc. I’m asked if I can stand up at all, and when I say I cannot, I am asked if I can at least lean to the side for her to get her hands under my buttocks. They always use the exact word, buttocks. It amuses me. I say I can at least lean for her the best I can and she satisfied with that. She then proceeds to do exactly what she said, in varying degrees of thoroughness. They always do exactly what they state they will do, but the intensity of the search varies from agent to agent. In one instance, I had an agent go so far as to pull my shirt up and stick her hands in the waistband of my skirt all the way around, exposing my belly to the whole security area, but typically it’s a perfunctory exam. She feels up my arms, my legs all the way to the crotch, under my buttocks (teehee), pats my head because I’m wearing a handkerchief, and then tests her hands for chemical traces. Sometimes she asks if I can remove my boots, and I tell her she’s welcome to do so but I cannot assist with that – usually that gets a nevermind, but once or twice they’ve taken my boots off anyway and put them through the scanner. They never help me put them back on. She then tests my chair by pressing on all of the padding in the back, seat, the arms, she does a visual inspection of everything to look for any obvious explosive devices, and then tests her hands again. The last thing they do is test the catheter bag. Often they’re content with me just squishing the bag around to prove it’s not anything rigid inside, sometimes they want to visually inspect inside the bag, and one time she made me take the urine bag out of the backpack. ATTENTION PDX: THIS IS WHAT A BAG OF URINE LOOKS LIKE. That was awesome. Then they swab my hands for chemical traces one more time, and when it declares me safe, I am free to go.
I find Gecko and he helps me put my boots and my sweatshirt back on, we load the luggage back up on the chair because I play pack mule on these trips, and we go to find our gate.
Phase 2 – Boarding
The way our schedules usually go, we have a bit of time before the gate agents are even available, so we have a moment to grab something to eat. When the gate agent shows up, Gecko goes to the counter and gives them The Schpiel. He lets them know that I am traveling in a wheelchair, that I will need assistance boarding the plane, and as a courtesy if they would like to allow whoever is in the window seat in our row to board with us so that they do not have to climb over me, that would be great. That last request was a hard earned lesson of awkwardness. Once I’m seated, I can only sort of swivel to the side to allow people in and out of the row, so whoever is stuck in the window seat has to climb over me like a human jungle gym. We have asked for premium seating from our travel agents and they’re usually pretty good about getting it to us – not because we want the free snack, but because there’s usually a little more legroom to allow the stranger sitting beside us to climb over me a bit easier. A bit less invasively. There’s paperwork to fill out for the chair, the details of which he lists by rote. The chair weighs 385 pounds. It is a gel type non spillable battery. The brake levers are located on the front lights, which he will be happy to demonstrate to the ramp crew. They mark all of this on a bright orange tag which is rubberbanded to my chair. Another tag for gate check is attached, and we are given the other half as a claim ticket. And then we wait.
About half an hour to actual boarding, we begin the circus. Hopefully, our aislemate is allowed to go on ahead. Ideally, the passenger assistance people have been alerted and there are two strapping people waiting for me. Often however, it’s a small Asian man, or 100 pound just out of high school girl, or a 5 foot nothing woman, or a man with back problems. And often just one of them. We patiently explain that I am not able to stand or walk on my own at all, and so I will require a dead lift into the aisle seat. Usually they are smart and request backup. Sometimes the tiny people stubbornly insist that they’ll be able to handle it. I explain that I am 240 pounds of dead weight, it’s not a matter of strength alone but also sheer physics, but if they think they can do it I’m game to try. This is me, being polite and stupid. I wheel to the end of the walkway just outside of the plane, where the aisle chair is waiting. The aisle chair is a tiny little wheel seat with straps on it. There is the inevitable discussion of logistics, and I explain that coming from the left side of me is the best way so we don’t have to work over the control panel for the motor chair. Sometimes, they try to take the catheter bag away from me to make it easier, and they usually recoil like they’ve been burned when I tell them it’s a catheter bag. The guys, mostly. Again, women generally seem cooler with pee bags. Hilarity. We move the arm of my chair and the aisle chair out of the way, and then there is the actual lift with mixed success. Because again, physics. It’s hard to do even if you’re very strong, it’s just an awkward carry. Sometimes they nail it. A few times I’ve gotten to very capable individuals who lifted me with no problem and got me in the chair with no sweat. A few. More often they find out the hard way that I’m not kidding that 240 pounds is a lot, and sometimes it takes more than one “123 lift” attempts. There is a very specific way to lift a person that they are obviously trained in, which makes the process easier on everyone, that involves them coming up under my arms and grasping my forearms while I cross my arms across my chest – but sometimes they’ll just grab on to me and just sort of haul for all they’re worth. They’ve left bruises on my arms before from this. I never complain, I’m just grateful as hell to have someone who can help me transfer. This process always knocks the wind out of me, and they’re on a very tight schedule so I’m not allowed time to recover before they start strapping me into the chair. Again, I’m a big girl now, so the straps they place across my chest usually just barely fit. If I’m having a particularly bad air day, they’re slightly suffocating. Once we have all the straps across my chest and across my legs, I tell them they’re going to have to physically lift my feet and put them on the bar, otherwise my feet will be dragging the entire way. They do so, sometimes half-ass and my feet fall and drag. So we have to pause and pick my feet up and try again.
I’m turned around in the chair and pulled into the plane backwards. Once we get me maneuvered to the aisle, the real fun starts. My ass is exactly as wide as the aisle is, so I hit the armrests on both sides every single time. The very first row is usually especially tight, so I crossed my arms over my chest and tell them they’re just gonna have to push. They do. Sometimes for extra fun the belts I’m strapped with will get caught on the arm rests as we pass. Once at our seats, the assistants busy themselves unstrapping me and then we do the haul. If we are lucky, the armrests in my plane seat raise out of the way. They don’t always, and an “up and over” lift sucks exponentially for everyone involved. If I am extra lucky, the assistants remember to raise the arm of the aisle chair before they try to haul me out of it into my seat. Often they don’t. “What are we caught on?” “MY RIBS” – which is honestly my bad as well, because I should know better than to assume they’ll remember. And it’s digging into my side so you would think I’d be aware of it. But maybe a third of the time we forget, so that hurts. One way or another we finally heave my ass into my plane seat, while my rock star brother deals with all of the carry-on luggage getting stowed and I try to catch my breath. Ideally whoever has the window seat is already seated, having gone on before us, and is vaguely amused by the whole thing. Someone ought to be. We manage to get me seatbelted in, and then we wait for everyone else in the world to board the plane.
And then we sit at the gate and wait. Usually the luggage crew don’t know what the hell to do with the power chair, which is ridiculous because people do travel with them. I’m living proof. I’m not unique. And yet every time, my brother has to show them how to engage the brakes, how to drive the thing, where the fuse is to disconnect the power – which is understandable, every single chair is unique – but then they don’t seem to know how the F to load the thing onto the plane itself. These people trying to figure that out delayed our flight almost half an hour once. And the pilot announced overhead exactly what the delay was about and cheerfully pointed out that if we wanted to look on the right-hand side of the plane we would see my chair being loaded onto the cargo. That was fucking delightful, being singled out like that. It was the best thing ever. There is nothing quite like giving a plane full of irritated people a target for their aggression. Pro tip: disabled people absolutely love having attention called to them. Introverted disabled people, doubly so. I said out loud to the plane that I was sorry. My brother kind of wanted to punch the pilot in the face. (Happy postnote to that story, one of the passengers stopped as they were deboarding to tell me I must never apologize for taking time and space. If people get bent out of shape because we have to wait for the chair to be loaded, that’s on the flight crew, not me. It was very kind and I told him so.)
The flight itself is like any other flight in the world. For whatever that’s worth.
Phase 3 – De-planing, Boss!
About 10 minutes before we actually land, I lean over to our aislemate and explain that when we land I will do my best to lean out of the way so they can get out. Sometimes they make polite noises about “Oh no it’s fine, I’ll just wait”, until I explain that I am literally going to be the last one off of the plane. It takes like 30 minutes. First on, last off. They usually see reason and struggle to get over me at that point. We wait until every last person is off of the plane. De-planing always seems to take twice as long as boarding for some reason. The cleaning crew always start before everyone’s completely off, and I feel really bad for them that we are in their way but there’s nothing to do about it. Eventually everyone’s off, and the passenger assistance crew show up with the aisle seat. Repeat: the entire rigmarole with explaining about deadlifts to people who are or are not capable of performing said deadlifts. Repeat the actual lift in, the strapping in, and the shoving through the too narrow hallway and out of the plane. I think maybe once my chair was waiting for me, every other time we have to sit there and wait for them to unload my power chair and bring it up the ramp to me – it has to go up an elevator, through the gate itself, and down the walkway to me.
If I’m lucky, the weight is less than 10 minutes, strapped into this narrow ass uncomfortable chair while the passenger assistance people occasionally make it pretty plain that they have other things to be doing. Sometimes they offer to swap me into a different chair so we can go up to the gate and wait for the chair to come – they can’t take the aisle chair out of the skyway and they can’t board the next flight until we’re out. I leave it up to them if they really feel like transferring me twice. They always say it’s up to me, but we usually wind up just hanging out and waiting for the power chair. If I’m really lucky, my chair shows up intact. It doesn’t always. See above. Once my chair arrives, we discuss the logistics of getting me from aisle chair to wheelchair, because this is a new crew, and really there’s no easy way to do it. The power chair is much taller than the aisle seat, so going from low ground to high ground is just more difficult. The headrest is in the way, and there’s just no graceful way to do it. Plus again, 240 pound deadlift. But when we do get me into the seat? It’s like heaven after all of that. My seat is so much softer than the airplane seat. I’m back in control. I’m free to go. We load as much of the carry-on as we can onto my chair, and we get the hell out of there.
The Conclusion
I honestly don’t know if I would do this if I were traveling for pleasure. It’s definitely worth putting up with for the medical trial and the chance to participate in it, no question. But of my own volition? I’m not sure it’s worth it. The loss of dignity, the invasive touching, the potential bruises, the singling out and staring from other passengers. The people I hve to deal with are always polite and usually kind, but it’s awkward for everyone. If it weren’t for Gecko helping me through all of this, there’s no way in HELL I could do it at all. That’s an absolute. But for now, we continue this once a month. For science.
And now you have a taste of what it’s like. I do not recommend it. Don’t get ALS, it sucks.
If you call me when I’m sleeping, I’m gonna miss your call. That’s how it is. It’s a physical comedy of errors when the phone rings while I’m sleeping, and it goes like this:
So yeah, if I’m not anticipating your call, I’m missing it. Leave me a voice mail. I’ll call you once I catch my damned breath.
In this installment of Things It Never Occurred to Me I’d Have To Worry About: Bras.
In a vague way, of course it occurred to me that it would eventually be a problem. But it was kind of lumped in with clothing in general. I knew I’d have trouble dressing, and understood eventually I would require help. It’s the intermediary stage that is proving to be a pain in the ass. Zippers took a little bit of doing, but eventually I figured out that simply adding key rings to the zipper pulls allowed me to work zippers myself. A little device that looks like a Swiss Army knife helps me with buttons. I worked out a trick for pulling up skirts or dresses down by capturing the fabric between my wheelchair and the palm of my hand to hold the fabric stationary and shifting my body. Makeup gets done two-handed these days.
But bras are tricky. They are fiddly things in the best of times. You have to simultaneously tug and latch tiny hooks into tiny eyelets. At my current state, I can tug or I can latch. You get one. And eventually I won’t be able to do that either. So I’m in this weird in between stage, not quite broken enough to require full-time assistance, but not really able-bodied enough to take care of myself completely either. A lot of days I can’t manage the bra, so I just do without. I really don’t like leaving my house with no bra on, it makes me feel trashy and holy SHIT boob sweat is totally a thing. There are some shirts that I cannot wear if I do not have a bra on. So what is a terminally ill woman whose hands are garbage meat noodles to do?
The obvious answer of course, is to get some help. Have someone else do it. And of course I can, eventually I’ll have to, but I’d rather delay that as long as I can. And it seems stupid that someone hasn’t invented something to cope with this problem. I’m not unique. The situation has come up for other people before. There has to be a solution.
Spoiler alert: there really doesn’t seem to be.
I spent more time and money than I’d like to admit trying to figure out a workaround. There are manufactured solutions for women with limited grip due to arthritis or the like, but they pose two problems. One, they usually go only up to a C cup, and I have not been a C cup since I was maybe 16. Even at my thinnest, I have always been a busty girl, and even normal bras were hard to find in my size. It’s easier these days, but in my 20s I had to shop at “big girl” stores before I was a “big girl”. So your medical device of a bra that only goes up to 38C is just not gonna cut it. Two, they’re ugly as shit. I already had problems with only being allowed to have bras in fat girl beige or white – the alternative is spending $40-$60 each at Lane Bryant or somewhere. (Thank God for Torrid. That’s all I have to say.) But cute or not, they still have the hook and eye closure that is rapidly becoming actually impossible.
There are front closing bras, but that offers the same exact hook and eye closure problem. There are no help. Sports bras are great, but they are necessarily restrictively tight and require strength to get on. So-called adhesive bras don’t work. See: busty girl. They just become kind of glorified pasties, no actual support. And as a bonus, they’re made of self-adhesive silicon which never stays on, or they’re basically stickers made with latex, which I am allergic to. Actual pasties or other kinds of nipple cover solve one problem, but a woman really requires structure when she gets of an age and of a size. A good bra is like an all day hug.
I don’t have an actual solution. My workaround currently is nipple cover stickers and really baggy shirts. Or one bra that I have which I can clasp because it’s too big for me so it doesn’t support well. I have to choose between functional and cute – you make that decision often with chronic or terminal conditions. On special occasions when I would like to dress up, I have to get help. (Again I am very lucky that J was my husband at one point so he’s already seen me naked and it’s not as awkward as it might otherwise be. Again, J is amazing.)
There has to be a better way to this. It’s dumb. Someone invent a magnetic clasp bra that’s strong enough to hold a double D. And hurry it up please, I don’t really have a lot of time to wait.
If I am approaching you from behind in my wheelchair, and I gently say “excuse me?”, or tap you on the shoulder if you can’t hear me, what I need you to do is:
1) Take one or two steps forward so that I can get behind you,
and
2) Watch your toes
That’s literally it. What I do not mean for you to do is:
1) Wheel around dramatically, see me in my wheelchair, apologize loudly and profusely, and make a big show of getting out of my way
or
2) Injure yourself in an effort to remove yourself from my path
or
3) Manhandle your friends/family and shove them out of my way
I promise you – wheelchairs are not contagious. I just need a couple extra inches of floor space, and your situational awareness so that you don’t accidentally back into me, that’s all.
Please go about your business.
*This post brought to you by the girl at Salt & Straw who literally fell into her friend’s laps trying to get out of my way last Sunday.
Man, what even IS my life anymore.
I got a voice mail the day after that last post from my awesome nurse. “Hi, I read your blog, and I have some ideas about the AVAPS.”
Uhhhhh..hi there. I forget that people read this, sometimes. I have the best freaking care team ever, you guys. I got contacted from three different folks to ABSOLUTELY ASSURE ME that the machine would get paid for, the rules are more bendy for folks with ALS so please don’t stress about it. And then thanks to Nurse Awesome, I was contacted yesterday by Providence Respiratory to adjust my settings remotely to ramp that sucker down.
OMG SO MUCH BETTER GUYS.
It had previously been forcing air down my throat so hard my ears were popping. Seriously. I can handle it now. I might even get compliance on my own without my awesome peeps having to argue for leeway. It’s still not exactly comfortable, but it’s so much more manageable.
Thursday was noooooooot a good day, there were a million things going wrong, including hurting myself by trying to lean over in the chair to pull something out from under my wheels. I felt and heard something go POP, and owowowowowow. Not a crack, though, and breathing was still ok, so I just rode it out and after a few days’ soreness I’m alright. Then Thursday night someone said something a bit unkind and I kinda completely lost my shit for awhile. Occasionally there’s a trigger and I mourn the person I don’t get to become. Five years ago, I had my very own house, I had just lost a lot of weight and was fitting in all my cute clothes again, I was going to school to further my career, I had all my shit sorted out and my life was pretty fucking great, actually. Thursday night I let myself grieve for her, because that future is dead, and I let myself be angry at people who say really stupid shit.
Friday I had the distinct displeasure of taking the sodding van in for repair. It cost me $919. I’m extremely grateful to Intel for their short term disability benefit easing me out of the workforce, because fortunately I HAVE that money. For now. Although now the brake light’s coming on. So that’ll be fun.
Saturday I did nothing but sleep and fuck around on the internet.
Sunday I did something SUPER COOL but is not my story to tell, so just believe me when I say it was amazing.
This morning my cat woke me up because I could hear him chewing on plastic. When I located him, he had a huge long piece of cellophane coming out of his mouth, and was choking on it a little. I could not get him to come to me for ANYTHING, and when I stood up and tried to get to him, of course he backed away. I took another step towards him and fell right on my ass. It didn’t hurt, even though I’ve kinda got no muscle in my ass to cushion the fall anymore, but it knocked a bit of breath away.
And then since I was on the floor, my fucking cat decided to come check me out and I was able to get the plastic out of his mouth.
Motherfucker.
The fall didn’t hurt, but getting off the floor did. I wound up sitting on my foot rests and using that wheelchair lift feature to get myself up off the ground, but even with the grab bar on my bed, the chair to push off of, and my walker on standby, I wasn’t able to get over up on the bed. I had to lower myself back to the floor and let myself catch my breath before I tried again, and was very, very grateful to the Depends company for their fine product and my forethought to start wearing them to bed otherwise I’d have exacerbated my situation by having to catch my breath sitting in a puddle.
Welcome to the TMI Show.
Now, I have my awesome watch, so I was never stranded. I always had options. I’m just stubborn as fuck. I texted J but he was not immediately responding, so I tried the wheelchair lift again, and used it to ALSO steer myself right up against the bed this time, and was able to get in bed. And then after catching my breath, getting up to go to the bathroom to change my disposable shorts. I cried for like half a second, but realistically I know this is definitely going to happen again. Probably not the cat part, but there will definitely be another fall, and next time I very probably will not be able to get myself up. It’s twelve hours later and even though I’ve been in bed all day I’m still exhausted from the ordeal. So that sucks. If I hadn’t had such a huge meltdown Thursday, it would have happened today.
So that’s my life, this last week. Kinda a shit show, but there were definitely some good bits in there.
Also I wanna restate that my care team is amazing, especially my nurse. <3
My friend and insanely talented artist and compassionate person Tamara owns a cute shop/art gallery called Redux here in Portland. She occasionally has art shows at Redux, and occasionally those gallery shows are to benefit a good cause, like for the Cat Adoption Team. She asked if I would be interested in in a show she was planning about Death Positivity. I said OH HELL YES PLEASE. She asked if I would mind it being a benefit for the ALS Association. I was all kinds of verklempt and said I thought that would be amazing. She asked if I would like to read something at the show. I said I would be honored, and I would try. This is what I wrote, and what I read tonight.
There’s a lot they don’t tell you about dying. I mean, it’s not as if terminal diagnoses come with any kind of handbook to begin with, but there are a few things one usually expects, typically to do with your specific disease. Spoiler alert: with ALS you stop being able to walk really well, or at all. You may also expect to lose the ability to speak and swallow. They tell you what kind of trajectory your disease is probably going to take, and they can usually give you some form of a timeline.
No one tells you though, how profoundly, emotionally tiring it is. I had to learn that on my own. There is a physical exhaustion that typically comes with whatever ails you, of course; hell, it’s usually one of the symptoms that told you something was wrong to begin with. But no one can properly prepare you for how soul crushingly exhausting the whole business of dying is. How the psychological process of navigating your own death saps what little energy you have to fight the physical troubles before you. How…lonely, this whole business is.
Here’s something else I had to learn for myself: it absolutely doesn’t have to be.
This is a hell of our own devising.
It’s a hell born of ignorance, paranoia, and good intention. It’s a hell that comes in slices, tiny slices of death denial force fed to us from a young age. When adults use phrases like “gone to sleep” or “gone to Heaven” to explain why Grandma isn’t going to be coming over for Christmas this year. When our beloved old pet goes to some imaginary farm to live out their twilight years. When we get older, and we learn what death is, hell is fed to us in new rules: you’re not allowed to say DEAD. Ever. They have gone to the Lord, or passed away. It’s not a dead body laid out in a coffin, their earthly remains lie…in repose. In an obscenely expensive burial chamber. Undertakers become funeral directors, graves become memorial sites, corpses become our dearly departed. A whole lexicon of mortality is denied to us, with harsh social consequence if we ever dare say BURIED instead of “laid to rest”. We cheerfully eat this poison, we send ourselves into fits of delusional paranoia as though merely mentioning someone is dead is some sort of invitation for disaster, to brush death under the carpet and never talk about it in polite company. As a society we have decided that this is healthy behavior.
But it isn’t.
Because let me tell you, this culture of death denial makes it REALLY, REALLY HARD to *be* dying. It is impossible to deal with the practicalities of the matter when no one will say it out loud. Any time you mention the D Word, you get uncomfortable silence and furtive glances and abrupt subject changes, or you get laughter and even more obvious subject changes. People are so worried about offending my delicate feelings that I am not allowed to express those feelings at all. Some have swallowed the belief that if you don’t talk about it, it magically can’t happen, or the other inane idea that thinking positive will fix everything! OH SHUSH DON’T TALK LIKE THAT THEY ARE GOING TO CURE THIS YOU WILL SEE – THE ICE BUCKETS WERE MAGIC. THOUGHTS AND PRAYERS ARE PANACEA. SHUT UP WITH YOUR DEPRESSING DEATH TALK. It is profoundly frustrating. It makes it difficult to plan what’s to become of my cats, or ask what earthly possessions would someone like to have, if they just hand wave and assure you that you have plenty of time to think about it. Later. Much later. Or never. That works too. Let’s deny that any of this is happening and just spend time together ok? Without talking about ..you know. It’s just so…morbid.
Instead, you’re expected to shut up about it, and bottle it up, and in the end you’ve spent your last days spiritually exhausted from having to pretend you’re not dying all while secretly dealing with all the emotional, physical, and bureaucratic nightmare of actually dying. And then of course it’s too late for those conversations, you’re capital D-Dead and all of your favorite things go to some charity or yard sale instead of the people who might cherish them for their history and their sentiment. Your stuff in the garbage, instead of a friend’s home, your social media accounts deleted instead of put in memorium, memories gone forever and your favorite dishes gone to your greedy aunt who will be selling them off for profit instead of your collector friend who’d actually appreciate and use them for what they are, and love them for whose they were. The letters you carefully wrote as goodbyes tossed into the recycling instead of delivered because you couldn’t tell anyone where they were. Who you are, your legacy, written over without your control or input simply because no one could look you in the eye and say “You are dying and that sucks, and since neither of us can do jack about that, I would really enjoy your cook books when you are gone.”
Death positivity is the cure for that hell. We’re going to die. That is okay. It is normal, and proper, and natural. Death positivity means understanding that, and even though it ABSOLUTELY SUCKS, not letting that get in the way of your daily business. Hell, it can do nothing but improve your daily business. Ever have a brush with death? Then you know this already in your bones. Mornings seem so much brighter when you almost didn’t have another one. Flowers smell so much sweeter when you know someday you will have smelled your last. Time becomes so much more precious when you understand there is a finite quantity. Marketers understand this and bank on it, or else “limited edition” would mean nothing.
Death positivity means understanding that YOU are limited edition.
“Repose” has another meaning. A lack of activity, a calm and composed manner. At rest, but alive. At peace with what’s to come, without need for euphemisms and coverup language. Call Death what it is, and fear it less. Talk about it openly, and remove some of its bite. Let me tell you what I need in order to die at peace without dancing around the reasons why. Ask me the questions you need answered, without fear of awkward silences or recrimination. Death is weird, be curious about it. Enjoy the time we have, because it’s limited. Make plans and understand why those plans are necessary. WRITE YOUR ADVANCE DIRECTIVE. Make sure your loved ones know where it is and what’s in it. Make peace with the idea of your own death, because it is going to happen and it doesn’t have to be a nasty shock when it does. We’re all going to die. It doesn’t have to kill you before you get a chance to stop breathing.
Build a better relationship with your own pending demise. Use the words DEATH and DYING, normalize it, and maybe, just maybe, we can all have some repose before we are In Repose.
Clinic was Monday! Let’s break down how it went, shall we?
PT/OT: My hands now no longer register ANYTHING on the strength test. Fuck. My arms are still plenty strong, though. My biceps are a force to be reckoned with from essentially doing push-ups on my walker every day. I have an appointment to follow-up with Deb the Awesome to reimagine my spider hand braces, since my wrists droop badly enough now they’re not helping much. It doesn’t do a lot of good to keep my fingers propped up if my hands as a whole are curling under. My finger joints are doing great though, still a lot of flexibility in them so I’m not going to be clawhands any time soon. Yay!
Dietician: (Hi, Kelly!) My weight remains stable, so I’m to keep doing what I am doing. I need to keep mindful of feeding myself while I’m at home, now, since I don’t have the routine of work to set that schedule for me. My mom doesn’t know to bring me food unless I ask her because she’s old as hell and eats like, a tic-tac a day and calls it a meal. (Hi, Mom, love you!)
Nurse: I forgot to ask her what my chair weighs. Dangit. It’s written down somewhere in my chart and I’m curious what that thing weighs without me in it. Combined, we are 627 pounds of geddafuggoutmaway. She arranged my appointment with Deb, and I didn’t otherwise have much for her. I rarely do. That’s a good thing.
Social Worker: Have I waxed poetic lately about how amazing the ALS Association is? Because damn. Single-handedly saving my sanity more than once, and saving my ass multiple times. We arranged for them to pick up equipment that I’ve borrowed (FOR FREE) that I no longer need because my disease has progressed beyond their use. We then spoke about some other situations that are stressing me out, like the lack of social services for my elderly disabled mother, and she promised to dig up what resources she could for my mom in our area. She sent me an email not even a day later with a bunch of places to check out. THAT is how amazing ALSA is. My mom’s not even on their roster, but because helping her would help ME, they were totally on it. I LOVE THE ALS ASSOCIATION.
Neurologist: Usually I’d be seeing Dr. Goslin, but today I met with her new partner. I’d seen him talk at the ALS Research Symposium, and I’d been given his bio before when I was asked to write something up for him explaining why the ALS Multidisciplinary Clinic was such an awesome thing. It was nice to meet him, and the dude has one of those old-school doctor bags that J wanted to steal. Plus for geek. It was a general get-to-know-you kinda appointment.
Speech: These appointments always go fast because I’ve got no symptoms at all yet. Puff up cheeks, move your tongue, eat this dry-ass graham cracker so I can watch you swallow. NBD, nothing to report.
Respiratory: Yeeeeeah this is always my absolute least favorite, not least of all is because it’s actually HARD. I’ve actually been noticing decline here, and since this is the part of ALS that actually IS going to kill me, I don’t like having a concrete measurement of how shitty my disease is. And yet. I want that measurement, so that I know, so that I can plan, and manage expectations. I came to this appointment knowing my breathing has gotten a bit worse lately; it’s taking a bit longer to recover when I exert myself, and there’s been a few times I wake up in the night because my breath is a little short. I also had to report that my CPAP machine (which I am now supposed to use every night) is busted, doesn’t power on at ALL. We are going to get me a new machine, called an AVAPS and I have no idea what the difference is because I keep forgetting to look it up.
Hang on.
“Noninvasive mechanical ventilation with average volume assured pressure support”
That tells me nothing. 2 secs.
…Oh. It’s…basically a non-invasive respirator. So it’s hardcore. OK then. That’s…intimidating. But I had the choice between getting my CPAP replaced or getting this new hotness, and since I still have Cadillac Intel Insurance for another year, I really want to get the expensive stuff now.
With that out of the way, we did all the usual tests. First they stick a rigid plastic thing in my mouth and I exhale as hard as I can to make these little indicators move; it measures cough strength. Cough strength is still normal; it was down ten points from last visit but she wasn’t worried about that at all. The next test involves a soft plastic mask over my nose and mouth and inhaling sharply; I always ace that one by going beyond what it measures; I guess I’m really good at..sucking…? Monday was no exception. The last test is the worst. Both in what it portends, and the work it takes to perform. My dudes, it is HARD. It blew goats even when my lungs were as strong as ten oxen. It involves inhaling deeply, plugging your nose, and then blowing out as hard as you can, for as long as you can, while getting encouragement shouted at you to GO GO GO MORE MORE MORE MORE and then when you can’t possibly exhale anything else and you feel like you’re going to pass out, another sharp, fast inhale.
Do that three times.
It actually makes J a little uncomfortable to watch, because it’s so obviously hard. It’s intense, it feels like hell, and at the end you have a number that represents your average lung capacity. When I started going to clinic, my scores were over a hundred percent – a very strong set of lungs. Over the last year, I’ve watched that number go down. She wasn’t concerned, really, even 80% was still really good! and she had no recommendations for me except to continue with the breath stacking exercises, which is where you inhale as much as you can and then use a balloon and tube to squuuuueeeeeeeeeeeeeze more air in. and hold. and release. And when you’re no longer light-headed, do it again. And again. I often describe it as reverse drowning, because that’s what it feels like. I do that, but not as often as I should. Six months ago at Clinic I hit 70% and she was a little less cavalier about me not doing them every day. 3 months ago on Clinic day, the machine was busted so I was spared. She wasn’t worried about it though, as my other tests were about the same as last time and she expected the same for this test, too.
I knew it wasn’t going to be the same. I feel a difference. When I eat too much food, I can feel that it’s harder to breathe – not that I’m short of breath, exactly, but I feel that when my lungs don’t have proper room to expand, there’s less strength in my diaphragm to bully the rest of my guts out of the way, maybe. It’s not harder to breathe, exactly, but I notice that I am breathing. And I was keenly aware that the breathing test this time was the hardest it’s ever been. I could feel veins on my forehead. She told me the result.
60%.
I’ve gone down 10% in six months.
I am now to do breath stacking twice a day, and sleep with the AVAPS every night, once it arrives. Next Clinic maybe we’ll do the respiratory early; having it be the very last thing in the day might have fudged my numbers a bit since I’d be tired. But somehow, I didn’t think that will matter. I didn’t take it well at all, and was in a shitty mood the rest of the night, and spent pretty much all day Tuesday crying or sleeping. I feel better now, hence why I have it in me to post tonight, but it kiiiiinda cemented something I’ve been thinking the last few months, something that I haven’t said out loud or posted or anything because I don’t want panic, either from myself or from any of you.
I am pretty goddamned sure I don’t have another 4 years.
I mean, it would be nice? But I’m not going to live to 50. I know that. I’ve been really fucking lucky to make it 4 years, and still be able to be on my feet awhile and wipe my own ass and everything. Some people with ALS don’t make it through ONE, and I’ve already had four, officially diagnosed, and probably closer to six since symptoms first appeared. I’m so, so fucking lucky. I get to see my death coming and plan for it. It was just rude as fuck to see that imaginary timeline become somewhat ..truncated, from what I was telling myself. But now, the part of ALS that will kill me has officially begun to kill me and I don’t have as much time as I thought.
You know what though?
That’s okay.
It really is. This is how ALS goes. This is normal. It’s okay. I’m alright.
Tonight, I am sanguine. There will be more freaking out; count on it. (See you at 3am, stupid brain) At this exact moment though? I have a clarity most people will never, ever experience. I see a world in 5 years without me in it, and it’s a good world and those I love are doing fine, in that long-term place. There’s a delicious release that comes with knowing so far in the future is officially Not My Fucking Problem. Today though, I am making many short-term plans. Hangouts with friends. An art show opening. The Walk to Defeat ALS on Sunday. A zoo trip with family. Neil DeGrasse Tyson – TWICE – in November. I still have a future to plan. It may be abbreviated, but goddammit I have SOME time. I get to make plans. It’s a fucking privilege to tell someone I’ll come to an event in April and know I can. After that. Who knows. My timeline is finite, truncated, and not guaranteed, but I have one. I can see what’s coming and make peace with it before it happens. I get the rare and amazing privilege to become friends with my own death.
And that is fucking awesome.
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?”
“Die.”
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.
One month as of tomorrow.
Four weeks and five days.
Twenty three working days.
If the cube move happens on schedule, which I doubt, ten more in-office days.
And then two weeks of paid vacation.
And then?
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.
Six weeks of being justified in my existence.
This is such unbelievable bullshit.
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:
Come Join the Walk to Defeat ALS, September 23rd, 2018.
You want to say goodbye? Walk with me, bitches.
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.
Hello (Manager),
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).
Most sincerely,
(me)
Four years ago, I was told I was going to die.
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.
One more year down. One more point for me.
Fuck yeah.
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.
I had a 3AM epiphany after watching one of many, many, many nature shows. I’ve been on a Carl Sagan and Brian Cox kick lately, having completely exhausted all things Sir Attenborough. My mind latched on to the idea and wrestled with it rather than letting me sleep: people are like volcanoes.
No wait, stick with me.
Our outer shell is a hard rocky thing, but internal emotions are a seething, writhing mass of potentially deadly stuff. Some people bottle that up and become a tall cold stately thing, very impressive to look at but not all that interesting. Some people let emotions seep out all over the place until they are thin, flat, and stretched out to a similar on interestingness. Most of us though, keep it bottled in until it can’t be bottled anymore, and there’s an explosion. Sometimes there are signs for months or even years before the event that an impending irruption is eminent; irritability, depression, reclusiveness the equivalents of smoke and the occasional ash plume. Sometimes the eruption is sudden and violent, and nothing around it is ever the same. And once the eruption is over, we may become a stark hellscape of stripped trees, chartered earth, and acrid air. Or, we may become an amazingly fertile landscape of lush vegetation, the ash of emotional eruption fertilizing our lives afterwards. We can either be scarred by the experience, or renewed by it. And we can, if we are lucky, even use that emotional lava to build something new.
I suppose I saw it coming for weeks, this latest eruption. I had a serious bout with Sadbrain, to the point last Wednesday while having dinner with J, he repeatedly asked me if I was okay, because I clearly wasn’t. I didn’t know what to tell him. Of course I wasn’t. I’m never going to be “okay”, not ever again, but I can be okay with what’s happening. Occasionally. Right now, in this moment. Naturally sometimes are going to be rougher than ours, of course they are, but Sadbrain is another beast entirely. It’s born of, but not entirely created by, current events of course, but there is an insidious undercurrent of malignant chemistry in the mix to make things even worse.
He and I had had a chat about suicidal ideation lately, I don’t even remember how it came about. I told him I’ve never been properly suicidal, never really wanted to commit suicide, to which he immediately scoffed. I corrected myself that of course I’ve thought about suicide, everyone does, even if only in a sort of philosophical way. But I’ve never actually thought about killing myself. “I don’t want to kill myself,” I told him, “but …sometimes I just don’t want to be alive anymore.” Being alive is hard, and often it would be so much easier to just …not. I don’t have the impetus or the energy to actually end my life, and I would never want to, but I can’t help sometimes to just… not want to exist.
And, this is the space I was in. Everything seemed unnecessarily difficult. My job had thrown a bit of a curveball at me, physically of course things are continuing to decline, there was drama with my cat, bad things happening to the people I love, horrors occurring daily in the world which I keep failing to protect myself from hearing about, and my continued search for a living situation is so desperately difficult it deserves its own post. Which, I may or may not get up the emotional fortitude to create some day. And so, two days ago, I completely erupted.
I was working from home that day. I had a role-playing game session that night planned with my friends, and was kind of freaking out about just not wanting to deal with the outside world. Not that I didn’t want to see my friends, and it’s not that I didn’t want to play, but that the concept of existing I any capacity in the outside world seemed untenable. Jay gave me an opportunity to decline to go, but of course my social anxiety and sad brain told me that if I couldn’t even manage to go out and have fun, then I was truly worthless. I was determined to make myself go out, even if I didn’t feel like it. I was watching Cosmos with Carl Sagan while I worked that day and I listened to Sagan talk about our thousands of nuclear bombs and how one of them is the equivalent destructive force of the entirety of the destructive force of all the bombs used in WW2. And then he wistfully pondered how we could wipe out the entire world population in the space of “a lazy afternoon” instead of one small corner of the world over 6 years and I just …totally lost my shit and started bawling.
Completely erupted.
The next 30 to 40 minutes were spent sobbing like a heartbroken thing, wailing into my hands, hyperventilating, or staring at a space on the wall with tears spilling down my cheeks. I can’t even articulate why I was crying, or what I thought it would help to rub the scratchy hand towel into my face until it hurt instead of blowing my nose, or why it just seems natural to rock my body back and forth or hold my fists in front of me and just shake, but that’s what I did. For almost an hour. There was no one sore spot, no one trigger, just that everything was terrible and I was broken and I wanted more than anything to just… Not have to exist.
Needless to say, I did not go to game that night.
Instead I took more than my usual dose of Ativan, put on a nature show that had not a shred of social commentary in it, cuddled the hell out of my cats, and eventually tried to sleep. Eventually I succeeded. I guess that’s one blissful thing about mental and emotional breakdowns, they leave you so completely exhausted that it’s easier to get to sleep.
I feel that this particular eruption is not quite over, there’s still a little hiccups that keep happening. I came across an image today, posted below, and I kind of lost it again. Just for a minute. Molly woke me up at 5 AM this morning to be petted, and I’m probably projecting but she seemed frustrated that I can’t quite had her properly anymore. And this is the first post I’ve ever cried while dictating. Sad brain has a lot to do with this, but of course there are legitimate underlying reasons for all of my distress definite geological pressures to go with the mystical phases of the moon and planets aligning just right. I wish I knew what drugs to take, how many virgins to sacrifice, to prevent these eruptions from happening again, but I know they’re going to. For as long as I am physically able to draw breath, and think, and feel. All I can really do is monitor the seismic activity of my emotional state and declare a state of emergency when I feel interruption is pending. And do my best to mitigate the damage when these eruptions are sudden severe, and catastrophic.
And try my damnedest to make sure this results in a verdant forest instead of a hellscape.
It really doesn’t take much to tank a mood when you’re already predisposed to depression. I’m pathetically prone to frustration, as well, so it really doesn’t go well when I try to do something and am thwarted. Especially when it’s something simple, and I really ought to be able to Do The Thing, dammit, only Godzilla Disease says “HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAnnnnnnnno.” I’m getting better with accepting physical limitations, but I’m still having a really hard time with accepting that I just don’t have enough mana to do a lot of things anymore. Like..the strength is there, but the exertion makes the thing impossible, or damn near. Or makes it impossible to accomplish anything AFTER Doing The Thing.
This comes up today because I was gonna do a video for you (really, honestly I truly was), but there were certain “beauty” regimens I’ve been completely neglecting and I’m FAR too vain to let y’all internet strangers see me with no hair extensions in and no makeup on. So I was doing stuff, and I wore myself the hell out even getting READY to take care of things, and then I got really frustrated and headachy, and my mood tanked. So rather than cry and feel sorry myself and sulk for the rest of the afternoon, I’m posting instead.
So here’s a list of things that wear me the hell out, that didn’t used to, and it’s frustrating as all get out.
1. Walking to my desk from the car when I go to work.
2. Restocking my minifridge with sodas.
3. Taking a freaking shower.
4. Laundry.
5. Feeding the cat AND getting food for myself in the same trip.
6. Putting on tights.
7. Shaving my head.
8. Going to more than two stores in one trip, even if I use the stupid little go-cart things that never work well.
9. Petting a cat for even half as long as they want me to.
10. Any stupid little repair/decorating thing like putting the poster back up that Molly knocked off the wall because she is a bitch.
Godzilla Disease is hard because it removes your ability to do things, but slowly, and gradually, so you can’t even get used to your new limitations because they are constantly changing. Which is DUMB and stupid and frustrating.
Anyway, that’s why you don’t get a video today. Soz.
I’ve always, always hated April Fool’s Day.
I’ve only ever been – at best – ambivalent towards the holiday. I don’t generally like pranks, because usually what I see aren’t so much as pranks as people being complete dicks to an innocent person. It’s a really mean-spirited holiday. I believe in open communication and trust, and this holiday celebrates being awful to people. The general rule is, “if it’s not at least as funny to the victim, it’s not a prank.”
Three years ago, April fools became something else to me. It became Diagnosis Day. Sadiversary. Three years ago, I sat in a doctors office, and was told I was going to die. Horribly. I had previously joked about having this appointment on this holiday, joking on Facebook that regardless of the results of this appointment, no one was going to believe me. I now tell people that my diagnosis was the un-funniest April fools prank ever.
Three years later, I’m taking stock of everything I thought since then, and everything that has become. I knew that no matter what I thought was going to be the problem, my real troubles were likely to be things that never occurred to me. I was mostly correct. I’m a pretty smart person, and observant, so I saw a lot of my troubles coming. I’ve surprised myself with how well I’ve handled some things I thought would destroy me. The loss of my hands. The death of my 23-year-old cat. And, predictably, some things surprised me by how intensely I reacted to them. Or, as has usually been the case, how little I reacted to them. My first fall. That was kind of a, “well that sucked.” Instead of a nuclear eruption of emotion. Often times a completely excusable meltdown has instead been met with, “yeah, okay, there’s that.”
Tuesday, I had my second semi serious fall. As is mostly usual I can’t even tell you exactly what happened to make me fall. I can tell you that’s a major contributor is that I OUGHT to have been holding onto something, and I wasn’t. That would’ve helped. Instead, I went down like a ton of bricks and somehow twisted my knee. It hurt badly enough that I was nauseous for a moment, and had to lie there a moment to catch my breath. I can tell you exactly how I managed to twist my knee, but I did so. Just so. And so for the last few days, I’ve been having a taste of what it’s like to be immobile. I’m used to being able to walk around my apartment, simply leaning on the walls for support. I couldn’t put any weight on my knee at all. And living alone meant that in order to get to the bathroom, I had to swivel myself onto my Walker and push myself around the apartment with my good leg. It was really…
… Lonely.
I wasn’t expecting that. I was expecting helpless, and frustrating, certainly. But it hasn’t really been the helplessness and being bedridden lately that got under my skin so bad. I’m a very independent person, and will fight to hold my own, on my own, until I am actually dead. It wasn’t really that I wanted help? But it was just as when I’m sick. I just wanted someone else around. Had I had a roommate at the time, I would have completely ignored them. As usual. But sometimes it’s pretty awesome just knowing someone else’s around. Especially when you’re hurt or ill.
Three years ago, I was completely able to stand up out of a chair on my own. Without using my hands, without even thinking about it. And now, when I try to get up off of the toilet I can’t even remember how my legs did that. How my body was able to just… Stand up. How I was able to run up a flight of stairs. It’s not even depressing so much as bizarre to me, that I have completely forgotten how to do simple things I used to do without thought. I expected frustration, anger at my ability to bend over, balanced on one leg, to pick something up off of the floor being taken away from me. But I find myself staring at whatever it is on the floor that is vexing me, baffled at how my body used to Do the Thing. Without will, without thought. Unthinkable.
It’s been three years since I was officially diagnosed. Self-inflicted injuries notwithstanding, I’m still on my feet. This is amazing. A lot of people with ALS would be dead by now. I’m losing the use of my hands, which is why I’ve been using voice dictation to create this post, but I can still do the basics. I can use the toilet by myself. I can go get myself a drink from the fridge, as long as I’m careful carrying it back. I can still pet my cats. For now. My progression is still very, very slow. And I am extraordinarily grateful.
I still hate April Fools’ Day. I can’t really blame the holiday for my diagnosis, or even the timing, because I was given the option to have this appointment on this day. I knew in my gut what this appointment was going to be about, by virtue of having been given the option to move the original appointment closer. I could’ve waited two days. But I already hate the holiday, so why taint any other perfectly good April day with an anniversary such as this?
Regardless of how you feel about the holiday, please treat your fellow humans with respect. Make sure your prank is funny, and not just you being a dick.
Life is enough of a dick as it is.
I suck at asking for help.
I know, you all are alerting the media right now. OH MY GOD REALLY!? DID YOU ALSO KNOW THAT WATER IS WET? IT IS TRUE!!
I’m getting better at it I swear. I will give the soda bottle one good try and then hand it over to someone for opening. I allowed friends to help with cleaning my apartment. I’ve brought jewelry out to the car on our way somewhere, for J to help me put it on rather than just not wearing it. I trust folks to help me up a curb without feeling like I’m going to pull us both down to the ground. It’s hard, and it’s definitely going to be a continuous work in progress until I no longer have the OPTION but to let people help, but there are definitely areas that I have a harder time with than others.
Like the cat box.
I don’t know why that’s such a trigger. Because it’s gross? Because my cats are not technically part of ME and so admitting I need help caring for them when they are not a medical necessity seems …frivolous? Even though I would literally rather die in a house full of shit than live without them? Because my cat Parmesan is 22 years old and shits wherever he wants and right now my front room is so absolutely goddamned GROSS that I am mortified at the thought of someone else having to deal with it?
But I have to.
I got a notice of inspection when I came home Tuesday; they’re coming in to check the fire alarms. No big deal. But yesterday I had to clean the cat box area, because that’s the first thing you see (and smell) when you come in to my apartment, and it needed doing. I’ve got puppy pads spread out all over my dining area, because Parmesan does what he wants and I can’t stop him and I love him enough that it’s a price I will pay for his company. The carpet is …unhappy with its lot in life, at this point. And that’s a fair part of why I had laminate floors in my house, because once a cat pees on something it is RUINED FOREVER. AND EVER. Cat owners know this. No amount of Nature’s Miracle will ever completely get rid of the smell. And so I just lay out the puppy pads so that hopefully Parm pees on them and then Ianto will NOT try to bury it and drag them all over the place trying to scratch over it, exposing the carpet where Parm will inevitably pee again. J steam cleaned the carpet not long ago, but it needs doing again. Until then, the spotbot and puppy pads will have to do. It’s not easy for me to do this, because I can’t just bend down to pick up the soiled pads, and crouch down to scoop the box. I have to get on the floor, which is less like “getting down on the floor” and more like “a controlled fall”. Then, pulling out the tray from the litter robot (SERIOUSLY BEST THING EVER), replacing the bag, collect all the pads, put out new ones, scoop out the other box, somehow get up off the floor, heft the heavy bag of used litter into the trash can, and then put it outside.
It didn’t used to be a huge production. Twenty minutes, tops.
Last night demonstrated that I can’t do this anymore. I couldn’t carry the water tanks for the spotbot without dropping them. I couldn’t effectively scoop out the boxes. I had the worst time opening and levering a box of cat litter to refresh the boxes. My hands wouldn’t uncurl after grasping the puppy pads. I had to use two hands to spread them out instead of the casual flick it used to take. I almost was unable to get off the floor when I was done, and I was out of breath and dripping sweat.
I can’t do this anymore.
I had a really, really hard time telling myself this last night, as I cleaned myself up and waited to stop sweating. And I don’t know why I’m so stubborn about this, but it seemed like it was the end of all things. I know it’s not. I’ve had friends volunteer, cheerfully, to come over and help with the cat boxes. It just seems like a special brand of failure, to no longer be able to do this. When I adopted my cats, I promised to love them for all time, and to be responsible for their care. I feel like I’m failing them at it. I am losing the ability to give them head skritches, to play with them, and to give them a sanitary place to do their thing. And it’s the worst. I am failing at Cat Mom, and it bothers the fuck out of me.
I’m not dealing gracefully with this at all.