Clinic Day 3/8/21

Clinic Day again, darlings. It’s virtual today, so I’m able to liveblog it. Hehehe. I apologize for not being very faithful with these updates lately. The changes I see are very slow and gradual, but I realize if I haven’t given updates for awhile, progression can seem very abrupt to YOU. So.

Spoiler alert: Not much has changed! I’ve had this 3-5 year life expectancy disease for almost 7 years now and I’m still able to walk a little. Things are, blissfully, going slooooooooooowwww.

First appointment: Nursing! I really like my nurse. We did the ALS-FRS test, which we did a week and a half ago, so SURPRISE! no changes. I didn’t have any new demands or needs, so we mostly talked about how miserable traveling in a power chair is.

Second: Pulmonary! I got my usual headpat for being good about using my AVAPS, which as usual feels a little undeserved now that I NEED it, otherwise I have nightmares about suffocating and keep waking up ’cause I’m not breathing well. He still doesn’t think I need a feeding tube yet; normally he suggests them once breathing gets below 50%, and last we checked I was 46%. My progression, though, is so slow he’s not worried about it just yet. We’ll check my breathing soon, it’s a whole ordeal and a separate appointment to get that done now, thanks to Covid. Fucking Covid. We also spoke briefly about an ALS Association event I spoke at, since he was there. I got a headpat for that, too. Yay.

Third: OT/PT! We didn’t have much to discuss because again: slow progression. I had some questions about Hoyer lift logistics, about eventually needing to get transferred to the toilet – do they have slings that uh..accommodate that? They do. My only experience with the lift (transferring to the exam table during research appointments) involved a very coccoon-like sling and I didn’t know how TF I’d transfer in that to a toilet or commode. Answer: I won’t! There’s a much easier kind of sling. I don’t need it yet or soon, but it’s the kind of thing I wonder about as transfers get a liiiiiittle bit harder month to month. So I ask now. Otherwise, the appointment went very quickly. I was reminded that hey, dummy, wrist braces exist, in fact I own a pair, and I really very should USE THEM when holding eating utensils especially. They make things Much More Stable.

Fourth: Palliative Care! This is an appointment I don’t technically need yet, not at all, but I haven’t talked to him since 2017 so I figured a check in chat wouldn’t hurt. When last we spoke, we set up my POLST (Physicians Orders for Life Sustaining Treatment – a document that tells medical professionals how far to go in order to save my life (spoiler alert – not very), kind of an Advance Directive but with a lot more weight to it)). I found out that they do NOT have a record of my Advance Directive on file, so it’s very good we spoke today. I’ll get that right over to them. The nurse is a very pleasant man to talk to, so it was lovely to chat.

Fifth: Dietician! It wasn’t the usual lovely person, so we didn’t get to chat and I was DENIED my chance for new kitten photos. Boooo. Her stand-in was a very nice woman but we only had official stuff to talk about, so it was short. Just: Keep doing what you’re doing, call us if something comes up.

It’s a recurring theme on Clinic Day. Which is a very good thing.

Sixth: Speech therapy! It WAS the usual lovely person, and I hadn’t seen her in a YEAR, so it was good to check in with her. It was another whirlwind appointment, just: make these funny faces, eat something so I can see you swallow, drink something so I can see you swallow, everything good? OK see you in 3 months.

Seventh: Social Worker! A fifteen minute chat to see if the ALS Association can do anything for me at the moment. I thanked them for the loaner power chair, which they’ve collected. Seriously. The loan of that chair saved SO much grief and damage to my own. I’m so grateful and they are worth every dime I’ve raised on their behalf. Speeeeeeaaaaaking of whiiiiiich….

***WARNING: SHAMELESS PLUG AHEAD***

So, the Walk to Defeat ALS is happening in May this year, and it’s a virtual walk again. If ya happen to have a coupla spare bucks, maybe donate to my walk?

***HERE IT COMES***

https://www.facebook.com/donate/3825898757530235/

***WE NOW RETURN YOU TO OUR SCHEDULED POST. THANK YOU***

Eighth: Neurologist! I like my new doctor. Dr. Goslin retired rather suddenly (to us; she’d been planning it for awhile apparently) late last year. I miss her like whoa, but the new one seems to know her shit and I trust her. I don’t envy her position, though, of having to fill a particularly beloved pair of shoes. There was nothing new to report on the ALS front, but there IS another drug we could try to get rid of the daily headaches, so we’re gonna give that a shot.

And with that, we’re done! 3 hours of visits in one go, rather than eight separate appointments. I LOVE THE CLINIC DAY MODEL. IT’S SO GOOD.

And now…I am gonna take a freakin’ nap.

<3

The ALS Association: A Love Letter

I was recently asked if I would be willing to speak to a group of people about the good work that the ALS Association does. My answer was an immediate and fervent HELL YES I WILL. I’ve expounded on their virtues before, and they will certainly will do again, it occurs to me that I have never devoted a post solely to that purpose. It’s long overdue. So here it is.

I was introduced to the ALS Association the day I was diagnosed. I was immediately given a phone number and a contact name, with promises they’d be able to help me along my newfound journey with a terminal disease. I waited a couple of days to call them, of course, because I needed time to let things settle. But once I did call them, within only a few short days I was sitting with a social worker in my living room. I liked her immediately, as I’ve come to like every single person I’ve ever met who works for the organization. The social worker was kind, patient, and definitely knew her stuff. She offered her sincere condolences for my diagnosis, and introduced me to the ALS Association and everything it could do for me.

So, as she introduced me, I introduce to you – what the ALS Association does for me.

INFORMATION: They had a wealth of information for me right out of the gate. She came with a stack of booklets on what to expect from various aspects of the disease; feeding tubes, ventilators, dietary needs. Even as she was handing the booklets to me, she was quick to point out that I absolutely did not have to look at any of this information or even think about it until I was ready. If I didn’t even feel up to taking the booklets, I did not have to. They had information about coordinating the care I was going to need, with solid advice on how to arrange it, or more appropriately – how NOT to arrange it, how to designate a primary person to manage all of that for me. I was given a book for that, too. I was given information about biweekly support groups. I was given information about hiring an elder care attorney to get my affairs and estate in order. In the space of one afternoon, I had every question answered, including questions I hadn’t even thought to ask yet.

SUPPORT: the biweekly support meetings are not only a place to support and commiserate, there is usually some kind of a presentation. How to select a caregiver, and how to know when to start that process. How to use a Hoyer lift with demonstrations. That sort of thing. I’ve only been to a couple, but in every single one of them I have felt heard and cared for. It introduced me to the ALS community at large, which is a subject for another blog post soon to come. In addition to the support groups, during my quarterly clinic days one of my appointments is with my social worker and a check in to see if there’s anything else they can do for me. They put me in contact with other people in the community who had resources I need, and set me up to be a penpal with other people in need of support themselves. They joined me on my house hunt. They helped me look for a van. They found me a lawyer. The annual Walk to Defeat ALS is a huge event that raises a lot of money, and is the single greatest ALS community event, hands-down. I cannot begin to describe to you how it feels to have such a horrible disease, and to show up to one of these events and see the LITERALLY THOUSANDS of people who have showed up to support me and those similarly afflicted. It awes me every time.

RESEARCH: the money raised by the ALS Association goes to fund research, along with everything else. Very important research. The ice bucket challenge raised literally millions of dollars for this endeavor. Research is the only way we are ever going to find a cure for this disease. The ALS Association funds research that leads to clinical trials, like the clinical trial I’m currently participating in. This research WILL ultimately save lives. Until then, it is helping make lives less miserable day by day.

FINANCIAL ASSISTANCE: twice a year, I am eligible for a $500 grant from the ALS Association to help me cover my expenses. Last year that grant paid for my medicine. And raised toilet seat. And wrist braces. I don’t even need to tell you how expensive it is to have ALS; I’ve said it before, and I’m sure you can imagine. One of my meds (for which I received a separate grant thankfully) costs $19,000 out-of-pocket. A month. Anytime you tack the word medical on top of something, it’s price goes up three times over. The cupholder on my wheelchair costs $60. The $500 could never hope to cover all of my expenses, but it is such a tremendous relief to have. A break. And all I have to do is ask for it.

EDUCATION: the ALS Association has a class in mindfulness that I was able to take. In times to come, I am very much going to need that skill, to get out of my own head when things get horrible. It was a good class. The ALS Association also hosts a research symposium, which features speakers on all of the latest research and medical trials happening. There’s always a QA session after the presentations, and I have never failed to learn something new and exciting.

PURPOSE: through the ALS Association, I’ve been able to participate in a number of extremely fulfilling projects. I’ve been interviewed for newsletters, I loaned my picture to fundraising efforts, I’ve been connected to people I can hopefully help. The moment I was diagnosed I knew I wanted to help in some way. I have been dealt a poor hand, but I can do something with it. I can help other people. Through research I can contribute to science and help find a cure. My life and death will mean something on a grander scale. The ALS Association has helped facilitate this. I cannot possibly be more grateful for that.

EQUIPMENT: the ALS Association has a wealth of equipment that they are happy and eager to share. Every single time my doctor has suggested some new piece of equipment, the ALS Association was quick to offer to loan me one. I mentioned in clinic that it was getting hard to stand up in the shower; they loaned me a shower chair. Then a shower bench when I could no longer step into the tub. They loaned me a cane. I had trepidations about graduating to a wheelchair when the time came, they loaned me one so that I could get used to being in it and try it out with no pressure. They offered to loan me a power chair to get used to it and see what kind of features I wanted. When I begin participating in clinical research in San Francisco, I was extremely nervous about having the airlines handle my wheelchair; the thing costs $47,000 and is my freedom. I was super paranoid about it getting damaged. The ALS Association loaned me a power chair for the express purpose of traveling in it so that my own chair was not at risk. The airline has managed to damage wheelchairs I was using four times in the last year and a half – I cannot even imagine what I would’ve done if that damage had been done to my personal wheelchair. I would be completely…well, screwed. They knew that damage was a risk and still very happily loaned me the chair. Because that’s what the ALS Association does. They help.

Let me be perfectly clear here: NONE OF THIS HAS COST ME A DAMN THING.

NADA.

Life with ALS often feels insurmountable. With the help of the ALS Association, I feel less alone in this struggle. I feel less lost. I feel like maybe there’s a little hope for us.

They’re good people, is what I’m saying.

TWD: Traveling While Disabled

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.

Dear Ableds,

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.

Freedom

Excuse me while I slip into my patented Rants Pants ™.

I’m going to make a very simple, polite request of you, and then I’m going to share a maddening picture, and then I’m going to rant for a bit. Ready? Here we go!

A simple request: please do not use the phrase “wheelchair-bound” or “confined to a wheelchair”.

Here is the picture:

DISCLAIMER: I actually love the sculpture here. It’s a very sweet tribute, and a very impressive bit of engineering. The picture’s awesome except that caption.

Okay. Here’s the rant:

I get what the original picture was going for, and it’s a very sweet sentiment, and the person who posted that picture meant well. How-the-fuck-ever, it is not accurate, honest, or just. It is exactly backwards. The wheelchair is not the confinement, it is the freedom. The wheelchair is not the problem, it is the goddamn solution. Until there is a cure for ALS, the closest thing we have is motherfucking technology. This modern miracle of metal and plastic and circuitry is the only reason I have anything close to a semblance of a normal life anymore.

I ain’t confined to SHIT.

The only thing I am bound to is this defective body. I am beholden to this shit-tastic disease. I am not confined to my wheelchair. I am not bound to it. It is not some magical item that I need to spend willpower on to activate. (That was an nerd reference for nerds.) The only binding my wheelchair provides is in the very literal sense when I am seatbelted into it for safety.

My wheelchair, the $47,000 marvel of technology that is the SS Opportunity, is my freedom.

Without my wheelchair, I would’ve had to quit my job more than six months before I actually did. Because I had the wheelchair, I was able to stick it out at work and have the energy to show up every day and do my work and still have some bit of energy left at the end of the day. Without it, I often went without lunch because I simply did not have the energy to go downstairs – literally immediately downstairs – to get some lunch. Without it, I had to constantly bother my fellow employees to do basic tasks that were actually part of my job such as fetching packages and mail because I did not have free hands to carry those things because I had a death grip on my walker. Without my wheelchair, I had to agonizingly plan every aspect of my work day to best budget the limited energy I had with my walker to get around. Without my wheelchair, I would have missed every work meeting I was not able to dial into. I would have missed every break room celebration of birthdays. Without it, I spent every day dehydrated because I couldn’t bring myself to ask a coworker to bring me something to drink as often as I needed it. Without it, I literally peed my pants at work because I was not able to get to the bathroom fast enough.

Even after my disability deprived me of my job, my wheelchair continues to afford me amazing freedom. Without my wheelchair, there would be no quick trips on my own to check the mail. Without my wheelchair, I would have to ask other people to lay out my clothes for me literally every fucking day because without it I cannot get into my closet. Without it, there would be no getting out of this apartment when I go stir crazy to catch a few Pokémon or whatever. Without my wheelchair, I would be confined to bed. All the time. There would be no grocery trips, no game nights, no dinners out with friends. My wheelchair allows me to do these things. My wheelchair is literally the only thing that allows me to leave the house. At all. Ever.

I fucking love my wheelchair.

So please, please stop saying ‘bound to a wheelchair’ or ‘confined’ or any other limiting word that is the exact opposite of what a wheelchair truly is. Until medical insurance covers palanquins, it is the key to my independence and literally the most liberating thing that I own.

deep breath

Okay, thank you for coming to my TED Talk. I’m going to take my Rants Pants ™ off now.

I love you. Please go about your business. And enjoy your freedom, as I enjoy mine.

The Best Present

I received a happy box in the mail yesterday! Something very cool was inside of it and I wanted to tell you about it.

Occasionally, I get random happy packages from certain friends. My friend Jim particularly, he sends me random boxes of completely bizarre things that he finds and thinks of me. Anything from Pez dispensers that have no head, to creepy little trinkets he finds in thrift stores, to snippets he cut out of a magazine. Lots of chicken related things. I adore getting random packages in the mail. I think everyone does, really. Something like 10 years ago, I did a happy box exchange in which I invited my friends to participate, and I sent out a box full of things that made me happy to each of them. I burned CDs of music that I like, made little packets of cake sprinkles and stickers, made happy little finger puppets from IKEA into refrigerator magnets. I included a note on everything to explain what it was and why it made me happy. Why it was important to me to include in that particular box. The idea was for it to be in exchange, and once they had received my package, they would send me a box of what made them happy back. Not everyone sent me a box back, but many did (with a couple notable people going way, way overboard above and beyond), and I adored every single one of them. Satou-chan was one of those who reciprocated (in spades).

I’ve known her for many, many years. She’s one of the very first people I ever met online and forged a real-life friendship with. We bonded over a common love of Japanese culture, writing, and a particular manga called Fushigi Yuugi. I flew all the way from Oregon to Atlanta, Georgia to attend my very first anime con with her and Holly, our other anime obsessed writer friend. It remains one of my happiest memories. I’m grateful every day that we kept in touch. She wound up moving to Arizona, and I was lucky enough to be sent there for work sometimes, and on one happy occasion we were able to sync our schedules and meet up in person again. That, also, is one of my happiest memories.

Satou-chan just sent me happy box.

She had texted me to let me know it was coming, and to confirm my address, and to apologize for the length of time it’d been since we last spoken. I truly wasn’t worried about that last thing, because communication works both ways and I’m just as guilty about not keeping in touch. I honestly don’t get offended when people go long periods of time without contacting me, because I am absolutely awful at it myself. My most cherished friendships are the ones in which I usually don’t speak to them for months, sometimes even years at a time, and when we do pick up it’s right back where we left off like no time at passed at all. My friendship with her is one of them.

Inside the box were many truly happy things. Including one of the most amazing cards I have ever seen in my entire life – it was a paper craft tray of sushi. Inside, she’d written all sorts of almost embarrassingly praising words, letting me know how much she cherished me and my friendship. The sushi card was because one of her favorite memories was of our Ariona hangouts and going to sushi together. I won’t lie; I totally cried. She also sent me stickers, because duh, and some happy fairy sparkly things, a glorious pair of socks, and probably the sweetest children’s book I have seen in forever. She said it was her favorite, and it reminded her of our friendship. (Yeah, I cried reading that, too.) Everything in the box was wrapped in tissue paper, separate little packages for me to unwrap and reveal surprises within. Every little packet had a note on it, explaining why she was giving me that particular thing, or what was on her mind when she bought it, or simply “This box contains tiny dinosaurs. I am sending them with love. <3 “

I loved every single gift, every single note, every single thought.

But the one that stood out the most, and the one that is probably my favorite thing in this whole entire box, was the note attached to a little bundle of things like lip balm, a keychain, and a little (freaking ADORABLE) notepad: “So… I realized early on that a lot of the stuff I bought for your happy box might be hard for you to use. (One reason I didn’t send.) Then I realized I had no business deciding that for you, and decided to send them anyway.”

And THAT, my friends, is how you be a fucking ALLY.

Accommodations

If I’d been told five years ago what ALS was, and been allowed to do as much research as I like, and then been asked to write down everything I thought might be a problem for someone with the disease, I’d still have gotten most of it wrong.

That’s part of why I made this blog, I guess. To track those things. Even things I probably would have mentioned, I would not have gotten completely right. I am very, very lucky that I am not the first person with this disease, and so every little one of these little problems that have come up almost always has a solution. And usually? Even a marketed product to fix it. A law to address it. Something.

For example! I have no strength in my feet. That’s a duh observation. But one of the unexpected consequences of that fact is that at night, the weight of the blankets simply resting on top of them becomes painful. The weight of the blankets push my feet down so my toes curl and my heels dig into the mattress. When you have strength in your toes you don’t even register the weight. When your feet are useless, you can actually get bedsores on your ankles and heels just from that little bit of weight. So now you know!

Luckily, folks have had this problem addressed before. One answer is a kind of cushiony boot that you wear to bed, to give your ankles extra cushion. But the BETTER solution is something called a bed cradle – a C shaped frame that slips under your mattress and keeps the covers up off your feet. It’s also awesome for cats to lean against, apparently.

(there will be a cute pic of my cats leaning against the bed cradle here as soon as my site stops being a shit head and lets me upload)

I love this thing.

One thing that ABSOLUTELY occurred to me as a need, however, was the need for a bathroom with bars and enough space to get a wheelchair in. It’s a no-brainer. And yet. AND YET. So many places get it wrong. I …hold on, before I get into this rant, I’ma look up what the legal requirements are. If i were a benevolent dictator, everyone who owns a public place would have to do a day in a wheelchair to get a feel for it and see what the hell people have to deal with, so they could visualize how best to build a proper fucking bathroom. And I know there are absolutely the kind of assholes who comply with the absolute letter of the ADA law but to the point of practical uselessness. I suspect that is the case for the Lake Oswego Stanford’s restaurant, which I’m about to rant about in a second. I am calling them out specifically here because we went there for Thanksgiving, and my experience with their toilet was so goddamned frustrating it verrrrrrrrrrrrry nearly ruined my day because I almost had to call J to come rescue me.

…hoooboy yah that stall was NOT compliant. OK so here is the photo I took of myself sitting on the toilet, in preparation for sending it to J by way of explanation why I needed him to come get me.

(there will be a pic of the bathroom stall here as soon as my site stops being a shit head and lets me upload)

My wheelchair is backed all the fuck back against the door. The foot rests on my wheelchair had to be folded up to get my chair in all the way so I could close the door. My knees are apart because there is literally three inches between the edge of my chair and the toilet bowl. On the one side of the stall is a very flimsy wooden partition and no grab bar. On the other wall? A grab bar AND THE FUCKING DIAPER CHANGE STATION MOUNTED ONE INCH ABOVE IT. The bar was rendered completely fucking useless because of that goddamned thing. There was another bar along the back wall, mounted one inch above the toilet tank.

RESTAURANTS AND OTHERS, Y U DO DIS

I should have not bothered, but I really had to go, so I managed to maneuver the chair in at an angle. I was able to get out of the chair thanks to its seat tilt function, but A GRAB BAR ON THAT WALL WOULD HAVE BEEN FUCKING NICE. Using the bar against the back wall I was able to pull myself forward to lean against the back wall to undress. Then carefully lower myself down, because I couldn’t even lean on that non-bar wall for support (see: flimsy-ass wooden partition). The toilet was lower than my chair, and the instant I sat down I knew I was not going to be able to get back up with any sort of ease.

I finished up and took a long time to figure out how the fuck I was going to get back up. Long enough that J was sending me a text to ask if I was okay, but I was already planning on what I was going to say to him to explain I was going to need his help to get out. Meanwhile the bathroom was suddenly full of women, there was a line for the two stalls, including one woman saying she couldn’t use the other stall because she needed the bars. I almost called out to her that the handicap stall wasn’t going to be of any use to her.

After some consideration, I wound up having to lift my leg to it sidesaddle on the toilet, swivel my bare ass on to my wheelchair from the toilet, then lift myself up from there to pull my underwear back up and my skirt down. When I sat back down, I was out of breath. Humiliated. And then had to open the stall door and do a six point turn in a crowded goddamned bathroom to get to the sink while being stared at by a line of ladies. The woman who needed the stall had to wait for me to wait for both sinks to be clear, because the handicap stall door opened almost against the sink and I had to be completely out of its way to let the door close. Which meant once she was in there and the door closed, I effectively trapped her in there with my chair while I went back up to the sink to wash my hands. I’d wanted to take a picture of the stall with the fucking diaper station obstructing the bar, but there was a very long line waiting for that toilet.

I’m simply saying that Stanford’s was really lucky their pumpkin cheesecake was delicious because I might have burned the fucking place down after that.

As it is, now that I’ve seen the legal requirements and know goddamned well they are not in compliance, I’m proooooooooolly gonna lodge a formal goddamned complaint. We like to go there for family gatherings, but I’d never had to use the bathroom before. I’ve sometimes thought about starting a sideblog for really terrible public toilets and why they are not useful for actual ADA people, but I think it would just be supremely rage inducing for me and no one would give a shit who had any power to change it.

So instead I rant here in slightly TMI tones for y’all folks to read about. You’re welcome.

My bed cradle is still fucking awesome though.










Repose

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.










Protip: Maaaaaaybe don’t prey on dying friends?

((I suppose I should be grateful. Instead of spending all day freaking out about tomorrow being my last day of work ever, I spent all day in a blind seething rage. It was a nice distraction, I guess, from the depressing AF thoughts that would otherwise have occupied my thoughts today. I knew halfway through this whole thing that 1) I was definitely going to blog about this, and 2) it was going to contain ALL OF THE SWEARS. You are hereby warned about ALLLLLLLLL of the swearing and anger contained in the following post.))

Today I am going to tell you about Jillian Mai Thi Epperly.

Maybe you’ve heard of her. If you haven’t, well, you’re in for a video treat in a moment. If you have, then this is NOT going to be the rant you expect. Oh no, it’s so much worse.

I met Jillian in fifth grade, at Faria Elementary School in Cupertino, California. She is one of the few girls I remember, because she was one of the few kids who actually was my friend back then. I was very strange little kid, and thanks to my genetic mutation I looked strange as well, and kids are horrible little monsters, so I didn’t really have a lot of friends. She was one of the few who actually spoke to me on a regular basis. I think we bonded a little bit, back then, because she was a super Asian kid with a white girl name, and I was a white girl with the super Middle Eastern name, and we just didn’t match peoples’ expectations. So we kind of matched each other.

She found me on Facebook a few years back. It was ..really strange to hear from her. She asked if I remembered her? Of course I did. You don’t forget a Vietnamese girl with a name like Jillian, especially when she was one of the few people who was ever nice to you in grade school. She said she remembered me, because when we were kids I had told her that the strange weather we were having was a result of El Niño. She told me she always thought that was the funniest thing. I was a little confused at that remark, since um…yeah, El Niño totally WAS the cause of a lot of weird weather we’d had? Why was a huge storm affecting weather patterns so funny, I don’t get it? But okay. I accept your friend request. I quickly learned that Jillian had become a rabid anti-vaxxer, and quickly blocked her from appearing in my feed but remained friends with her and honestly…kind of forgot about her. This was a couple of years ago, and I was a lot more generous and patient towards anti-vaxxers and pseudo-scientists back then. (Not anymore. SERIOUSLY VACCINATE YOUR FUCKING CHILDREN YOU GODDAMNED MORONS. PEOPLE ARE DYING OF PREVENTABLE FUCKING DISEASES WE HAD ALL BUT ERADICATED. WHAT THE FUCK IS WRONG WITH YOU.)

In my personal Facebook, I chronicle bits and pieces of this ALS bullshit journey, and post a link anytime I update this blog. Overall though, I purposely try to keep my Facebook page very light because the world at large is a fucking depressing place and I will drive myself crazy if I talk about nothing but politics and everything that makes me angry. So instead, every month I choose a theme and post related pictures. Usually it involves some kind of pun like Janusweary, with pictures containing foul language, or Gaypril, pictures of LGBT+ positive images. This month’s theme is Awwwgust, and I’m posting lots of pictures of adorable things.

This morning I posted an adorable picture of a kitten that looks for all of the world like it is smiling. It had not been posted for five minutes when I got two comments from Jillian (after not interacting with her for months and months, mind you). The first was link to her website, with a…sort of unhinged screed containing a lot of marketing language along the lines of “Are you tired of the cycle of dependence on drugs, supplements, and herbs spending thousands and thousands of dollars and you are still not feeling better 100%? ” I sighed inwardly, it was a lot of marketing babble clearly trying to sell me on whatever snake oil she was passionately involved in and wanted to evangelize about. The second comment, though, was this: “Remember I told you I’d find something for you well I created a protocol that could give you the opportunity to reverse your condition and I hope you’re open enough to read my book or at least my website before you buy the book”

I just sort of…stared at the screen for a second. Did she just…?

Really? This is what’s happening?

I typed up a reply, deleted it, started to retype, and just…got…so ANGRY. I debated deleting her comments and blocking her for real and moving on with my life, but I am emotionally fried right now for obvious reasons and I was feeling petty as fuck and..kiiiinda wanted to see my friends happen at her. So I allowed her comments to stay, and let them let her have it. And they did, in spades, because I know some VERY SMART and VERY SNARKY people who, as it turns out, are very, very protective of me, and took great delight in dragging her ass, but that’s not what this post is about.

((I love my friends so much I can’t even tell you.))

I decided to respond before anyone else could, though, juuuuust in case I was misunderstanding. The comment I eventually settled on was, “…you’re seriously trying to *sell* me something you think might cure my terminal disease? What predatory fuckery is that??”

And then my friends were all up ons, having a fucking FIELD DAY with her, and that’s when I found out that she was actually a little bit of A Big Deal in the pseudo-science community with tens of thousands of followers in a self-described (!!) “poop cult” and had appeared on Dr. Phil to defend her aforementioned “protocol” cure. Now, I’m not here to talk about her miracle cure “protocol” of fermented salt water and cabbage. That’s not at all what this post is about, and a LOT of other people have already expounded on that subject. Each of those words is a different link that will open in a new window. Enjoy that light reading for later, if you feel like it. Though I WILL include this video link right here for you to watch:

((That man is very smart, and swears like a sailor, and is my new best friend. Because he is smart and swears, yes, and we have the same Bob Ross shirt.
His videos are Good Stuff, but his research on Jillian is amazing.))

Her response was, “Wow vashti wow all I’m trying to do is help you out because of your condition knowing what you’re dealing with but that’s fine if you don’t want to have an opportunity that’s fine you can stay sick and let your friends keep you sick good luck to you” and then, “Because you deserve better than what you have right now if you don’t think you deserve that then you deserve to have whatever you want”

An. Opportunity. To give her money? For information she thought might SAVE MY LIFE.

“….you’re asking me…as a FRIEND with a TERMINAL ILLNESS…to GIVE YOU MONEY to cure my disease. I DO deserve not to be sick. And I ALSO deserve to not be taken advantage of in a vulnerable state. Even if I believed for a SECOND that fermented cabbage water would cure me, it’s unbelievable that you are telling me to give you money in exchange for this information. I don’t give a shit if it works or not; if I honestly believed I could cure anyone’s death sentence, I would hand it over in all quickness. If I could cure a friend’s cancer I would carve out my own kidney for free before they even asked. You’re not trying to help me. You’re trying to make money off of me and that is fucking reprehensible.”

After sanctimoniously telling my friends, “I will let vashti block me I am not going to be bullied by any of you people because I’m trying to help and if you guys want to stay in your little environments with no hope and all sickness then fine”, she responded to me, “And I expect a lot more out of you vashti considering you and I went to school but it seems like your sickness really took you over and made you a very hateful person and I’m sad for you”

“And I expected you to be a decent human being,” I told her, “and not try to take advantage of dying people but WHOOPS guess we were both wrong today.”

And then she blocked me.

There..

There are not enough swears and throwing things and table flips IN THE WORLD to convey my anger. This woman is an absolute piece of shit. Again, NOTHING to do with whether or not her ‘cure’ works or just makes you shit forever until you literally die of dehydration. Just. As a human being. This woman looked at me, a woman she called a friend since fifth grade, saw my debilitating terminal disease, and thought to herself, “this is a perfect marketing opportunity.”

And then after blocking me, she crawled back to her facebook cave and wrote this, which a friend was kind enough to screenshot:

I…she… She felt it was acceptable to try to SELL a theoretical CURE to a DYING FRIEND, because…I am “still well enough to buy things on the internet”.

…..

AS LONG AS SHE’S STILL KICKIN’ WE CAN GIT SOME MONEY OUTTA HER YET, BOYS. YEEEHAWWWWW!!!!!!!!!!! SADDLE THE FUCK UP AND LET’S GIT ‘ER PAID!!!!

what the ACTUAL MOTHERFUCKING FUCK.

THIS WOMAN IS AN ABSOLUTE GARBAGE PERSON MADE OF DOG SHIT AND FIRE.

It’s not bad enough to sell false hope to dying people just to make a quick buck, and that is some REPREHENSIBLE SHIT, believe me, but – lady, YOU KNOW MY NAME. WE WERE FRIENDS IN GODDAMNED GRADE SCHOOL. YOU KNOW MY NAME AND MY STORY AND THE HORRORS OF MY FUCKING DISEASE AND YOU SAW THIS AS A MOTHERFUCKING SALES OPPORTUNITY. And then when that BACKFIRED in a frankly GLORIOUS WAY, thanks to my friends, you crawl back to your page and act like YOU ARE THE VICTIM??? YOU WERE ONLY TRYING TO HELP ME?? BY MAKING ME PAY TO BUY YOUR BOOK AND SUBSCRIBE TO YOUR WEBSITE?

You absolute PIECE OF SHIT.

I said just in my last post that I would never wish ALS on anyone, but holy FUCK is she coming close to a candidate. Cause not only allll of this, she is ALSO a goddamned hateful human being who thinks her bullshit will “cure” gays and trans and autistic people. BECAUSE SHE THINKS HOMOSEXUALITY IS SOMETHING THAT NEEDS TO BE CURED WITH SEWAGE. So. Yeah. In the name of science, I hope she DOES get ALS. It will be a scientific experiment. If it works and ALS goes away, we have a cure and she can have a goddamned Nobel prize. If it doesn’t, then the world is rid of a predatory batshit waste of human tissue who spent her final days shitting out her own stomach lining.

I’m good with those odds.










Hypocrite

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.










Bent Out of Shape

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:

Useful Chart of Usefulness

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.










Resolving the Dilemma

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.










The ALS Clinic

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.










Keep Your Mouth Shut, Or Just Say You’re Sorry

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.

So here it is, A Grief Primer.










Brutal Honesty

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.










A Humble Request

I’d like to formally ask all of you guys to do something that you really ought to be doing anyway:

When you wash your hands, and splash water on the counter, wipe it up.

Again, you should be doing this anyway. But I ask this of you, because I can’t support my own weight on my own two feet anymore, so I have to lean against the counter to turn the faucet on to wash my hands, so I get a big wet line across my gut. And my hands don’t work very well, so I usually have to lean on my elbows to get them under the water and rub them together to soap up, so now I’m also wet to the elbows.

Just, dry your hands, then run that towel across the counter before you throw it away. I promise it’s not hard. I’ve always done it, when my body worked like yours does, so I know it’s possible.

Thanks, darlings.










How to Help in Three Easy Steps!

Howdy folks! Brought on by a recent incident, which I will tell you about in another entry, the question was once again asked, both directly of me and in a general forum:

WHAT DO I DO WHEN I SEE A PERSON STRUGGLING WITH THEIR HANDICAP?

Maybe you just saw a blind person attempting to cross the street and having a hard time. Maybe it’s a person in a wheelchair having a rough time pulling something off a store shelf. Maybe you just witnessed me try to get up in to a tiny-ass unstable boat and fail miserably in front of Anne Wheaton in Loreto, Mexico. Whatever the incident, there is someone with some obvious difficulty in life trying to do A Thing and you’re not sure how to proceed. Well, as a public service announcement, I’m here to help.

There are three easy steps*.

1) OFFER YOUR HELP.

Seriously, you’d think this was obvious, but the Bystander Effect is a real thing and you’d be appalled at how often no one says or does anything. Don’t be a grandiose dick about it, just approach the person and offer a specific way you can be of help, or ask if there is something you can do. “Hey, can I grab something off the shelf for you?” “Do you want a hand across the street?” “The boat crew clearly have no fucking idea how to get you off the ground, how can I help get you up?” DO NOT – UNDER ANY CIRCUMSTANCES – ENTER PERSONAL SPACE TO HELP WITHOUT ASKING. Hooooly HELL you would think this is common sense, but I wonder how many blind people have someone just fucking grab their arm and start pulling them across the street. Just ..don’t do this. Don’t start trying to haul me to my feet when I’ve had a fall. I need to muster strength for the attempt, for one, and it’s just incredibly invasive to have a stranger start grabbing at you when you’re already at a very vulnerable moment. Politely announce your presence and ask if you can help. And then…

2) ACCEPT NO FOR AN ANSWER / ASSIST WITHOUT MAKING A BIG FUCKING DEAL ABOUT IT

Sometimes the answer will be “No, thanks.” Accept this and move on. This person’s difficulty is not your Heroic Moment; they are not here to provide you with your Good Deed For the Day. They’re just trying to get some shopping done/cross the street/get on the goddamned boat/live their life like a normal person, and are under no obligation whatsoever to accept your help, even if everyone in the world can see it would be so much easier if they’d just get over it and accept the help. Graciously allow them to decline and move on with your day.

Alternately, if they accept your help, Do the Thing. And give zero fucks about it. Don’t make a big show about helping; just grab the whatever for them, help them across the street like it ain’t no thang, whatever. They will say thanks. Tell them it’s no big deal and believe that it is not. I, for one, would be so much more willing to accept simple assistance from strangers if people were extra chill about it, but usually they act like a big damn hero about the whole thing and I’ve suddenly become someone’s Inspiration Porn and I can already HEAR them telling their spouse when they get home about how they helped a woman in a walker pick up her dropped purse. Just pick up the fucking purse and hand it over and go on with your life. You’re not curing cancer, here, you’re just holding a door for someone who can’t walk.

Whichever option was chosen, the next step is the same….

3) PRETEND THE WHOLE THING NEVER HAPPENED

Most important. THE MOST. If it was a routine thing that you might have done for anyone, like opening a door or helping someone get something from a shelf, then it’s already no big deal and a part of life. Move on. If it’s something like a fall recovery or an unexpectedly needed assist (hello, hands suddenly not working so I can’t swipe my own fucking debit card!), then it’s almost certain that the person in need of help is embarrassed by the unwanted attention already. It’s humiliating to fall on your ass even if there isn’t a disability involved. Whether or not there was a celebrity watching. It’s ALWAYS my most fervent desire that the whole thing would be forgotten immediately. This also ties into the whole “I’m not your good deed” ideal, but primarily? I’m embarrassed to have been caught publicly in a weak moment, whether it can be forgiven due to disease or not. Act natural. Make sure they’re okay, and then forget the whole thing. Please. Don’t make some weak-ass joke, or reassure me that it’s okay and natural, just..pretend it never fucking happened in the first place. Whatever’s whatever, man, no big thing, not even worth mentioning. EVER. AGAIN.

That’s it!

OFFER, ACCEPT/ASSIST, IGNORE.

The only miiiiiiiinor correction to this may be to ignore that I said no thanks and it turns out I DO need some help. Then you may add RESIST, as in RESIST the temptation to say “I told you so” when I accept that I do need assistance after all. I’m still learning my own limitations, and they change every day. be patient with me in this, and I will be patient with you as you learn The Steps. We’ll help each other out, okay?

*Your mileage may vary. Some disabled people are total assholes about this sort of thing. This is just what I think is most useful, for most people.










Death Cafe

I have always been a spooky kid. From a young age, I have been fascinated by the aesthetic of death, the graves and skeletons and ghosts, and later Victorian memorial photography and mourning jewelry. I was peripherally aware of death, of course, my whole life. We all are. It wasn’t until Jack Kevorkian came into the American consciousness that I learned that I had Definite Opinions about capital D DEATH as an absolute, as well as an aesthetic. I found that I strongly believe we all ought to have control over our own mortality, and had my first real experience with how afraid society is to discuss the subject at all. Later, when going through the Diagnosis Cha Cha, I experienced my first profound frustration with peoples’ willingness – and even their ABILITY – to discuss it at all.

Today I attended my first Death Cafe.

You can learn about them here: http://deathcafe.com/ It’s essentially a safe space to talk freely and openly about death, and it’s meant to be a really positive experience. I first found out about them through the Order of the Good Death; I’ve fangirled about Caitlyn Doughty and her Ask a Mortician video series before. I finally worked up the nerve to sign up and attend one; my hesitation was not at all about the subject matter, but about, you know…that whole show up and talk to total strangers. This is what I do here, of course, but in a more one-sided capacity. It was a space to get to know other death-curious people, exchange ideas, and finally -FINALLY – be allowed to talk freely about this whole ‘death’ thing.

We had a wonderful facilitator at the table, who was warm, inclusive, and knowledgeable. There was a young woman who had older parents and didn’t know how to talk to them about death, a wonderful older woman who had the same frustrations with being unable to talk to her loved ones about death, and an artist who works with the dying to design their own crematory urns.

FUCKING AWESOME, RIGHT!?!

…Damn right I got her contact info.

We all spoke for about two hours, about everything from death acceptance to memorial services and keepsakes to death-positive media. I learned about POST/POLST forms (a beefed up Advance Directive that is hot pink and you put it on your fridge so the ambulance folk know what you want). I got a very warm and supportive hug. I taught a delightfully sweary old woman the phrase “lalochezia”. I learned about support groups that aren’t support groups at all for the recently bereaved. We talked about how America doesn’t really have its own death rituals as a culture, and so when it comes to death, we are all at a loss as to what to do. I mean, wen someone dies, you show up with a casserole, but then what? We don’t have societal rules and custom for how to treat the dead, besides paying total strangers to come deal with it and sweep the whole thing under a clinical rug. We’ve become divorced from Death, and it is a damn shame.

I will definitely be attending more of these. It was a pleasant afternoon of drinking tea, eating cookies, and having a chat about things you don’t normally get to talk freely about. I highly recommend you seek one out in your neighborhood. The more we talk about this, the more normal it becomes, and the more healthy our attitude towards death as a culture becomes. And this is a good thing. It helps the dying to not feel so alienated. It helps the grieving to not feel so alone. It helps us all to know what to do, how to have these conversations while we still can.

Knowledge is power, indeed, and by talking about death, we destroy some of its mystique and its terror. We make it normal, and we help each other through impending loss – be it even our own departure. I want to be able to have these conversations with my loved ones, but until that becomes normal and okay, I can have these conversations with strangers.

It’s almost as good.