Category: DME

Hugs

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I miss hugs.

I’m not even talking about being touch-starved because of COVID, either, though that is also certainly a thing. I’m talking, full body contact, chins on each other’s shoulders, arms wrapped tight, feeling each other’s heartbeat hugs. Rhythmic syncing of breathing hugs. Every thing in the world is going to be okay because I have you. Here. In this moment. Hugs. Swapping body heat and comfort and love hugs.

The good shit.

I’ve been told I give great hugs. I didn’t used to. My household was not a hugging family at all. No touchy. In junior high, I’d watch the girls hug each other hello, even though they’d seen each other scarcely two hours ago before lunch, and think: I want that. So over time, I let myself do that. And I confirmed what I’d suspected all along:

HUGS FUCKING RULE.

I miss them so much. I miss the touch. I miss the ritual of it. I miss standing in front of J and throwing my arms around his neck, him wrapping his arms around my ribcage and squeezing until my spine popped. I miss the kind of hugs where the other person runs their hands over your back.

Proper hugs are another thing ALS took from me. You can not hug someone properly from a wheelchair. You get a cheek touch, clumsy arms around your shoulders while you try not to stick your face in their cleavage.  Awkward.  They’re still good because they’re still hugs!  But they’re not GREAT hugs.

Being in a chair is lonely. Being in a chair in a pandemic is hell. I miss hugs.

If you can, today, give someone a hug for me. Get you some of that good, good oxytocin shit. Aww yiss. Hugs fucking rule. Have one on my behalf and improve your day. 

The ALS Association: A Love Letter

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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.

Washed Up

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Yesterday began quite poorly. The tube going to my catheter’s drain bag popped out during the night, and apparently I slept hard enough I didn’t wake up until you could wring out my pajamas like a washrag. Thankfully I sleep with a mattress protector so it wasn’t a total disaster. Unfortunately my port is accessed right now, so I couldn’t take a shower and had to make do with washcloths and soapy hot water.

Fortunately I have a J. He’s more amazing than I could ever tell you and OH HOW I HAVE TRIED. He’s working from home, so he brought his work laptop over to monitor work requests and emails and changed out my bed. Best. Friend. Ever. While he was putting things through the wash, he asked me where a particular soap was.

“I don’t fucking know,” I told him, exasperated and in a bad mood. “Why would I know? I haven’t done laundry in TWO YEARS.”

The universe did a record scratch and the words turned to ash in my mouth.

“Thaaaaaaaaaaaat was not a happy thought,” I said quietly. A gross understatement. I haven’t done any real cleaning in my apartment in about two years. I can’t push a vacuum cleaner or wash a window. I can barely even wash my own hands. If I didn’t have my mother living with me to bring me food, I’d be screwed.

I know I am not just worth my productivity. I know I’m worth more than what job I can do, what tasks I can perform. But sometimes it’s so easy to forget. It’s easy to feel worthless when you have no tangible contribution to make. After a lifetime of hard-won self reliance, losing that control of my own destiny is a hard lesson I’m still learning.

And until I do learn – if I do learn – then every self-awareness moment like this is going to continue to punch me in the guts. All I can do is try not to let it under my skin so much when it does.

Meanwhile, I have a J to help me wash the sheets. Even if I don’t know where the soap is.

TWD: Traveling While Disabled

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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.

Feed Me, Seymour

tragerstreit5 Comments

Well hello. It’s been a minute.

I’ve had a couple of doctors appointments which I guess I should tell you about, since I tell you everything. (Just about. More than I ever thought I’d tell someone. Never did I ever think I’d be telling absolute strangers about my poop. Welcome to this!) I had MRIs done to make sure there weren’t obvious physical deformities causing the problem and there weren’t – the MRI came up normal, except I apparently have a growth on my adrenal gland? because of course I do. We’ll check on that in six months to make sure it hasn’t grown. What’s one more medical problem to keep tabs on? Add it to the pile! I mean, even if it IS cancer, the fuck are we going to do about it except have a race to see which one kills me first? Winner literally takes all.

ANYway. We started down the road of gastroenterology to figure out what was going on there, and that whole appointment was a complete farce. It started out as a disaster before we even got there -literally everything went wrong in getting me out of the house and to the appointment to begin with. The first ice of the season needed to be scraped off my windshield, and I don’t have an ice scraper in the van yet (hooray for hotel card keys!), we missed a turn, there was an accident on the road causing a delay, and then we wound up going to the wrong place altogether, which was totally my fault for assuming I knew where it was. There is a huge Providence Hospital which contains many professional medical offices inside, and that’s where my urologist was, so that’s where we went. It turns out on that very same street there is a little business park next door, which is where I should have gone. It was ridiculously close but just too far to walk in the literal freezing cold. So we had to go back across to the parking structure, load me into the van, strap my chair down, drive half a block, park, unstrap, unload, get inside. I arrived 11 minutes late for my appointment and was told that exactly 10 minutes is the cut off and I would need to reschedule. She wasn’t even allowed to ask for an exception, she cheerfully told me. I had tried to call them to tell them I was running late, but wound up in a phone tree to press one for physical address, two for the fax number, and if this is an actual emergency etc. etc. and no way to speak to a human being at all. So, irritated, I conceded defeat and made an appointment for later that afternoon with a different doctor and apologized a lot to J for making him wake up at 6AM the day after Christmas for nothing and now he had to miss even MORE work because of me.

At that rescheduled appointment, the doctor was 25 minutes late coming in (because when doctors are late it’s fine), hadn’t even looked at the MRI which had been done, and so he wound up leaving the room to go do that while we waited some more. The doctor came back, confirmed that everything looked normal there and there seems to be no physical reason for my issue. He suggested a load of tests for bacterial infections, and a host of other possible issues in my guts. Also he told me to cut out caffeine and artificial sweeteners for week and see how that went. All of this can cause loose stools, he explained, so we’ll start with the basics and go from there.

All of which has absolutely nothing to do with the main problem.

In the meantime, collect a stool sample with hands that don’t work! Poop in this thing and then stand up and grab it from under you without spilling everything – you can do that right? Here’s four tightly capped containers – threemwith liquid to spill everywhere! – and tiny little spatulas to collect the sample. And gloves that you can’t put on because, again, your hands don’t work. Easy peasy!

I am legitimately afraid of the prep work that will be required when he decides I need a colonoscopy. I quite literally do not know how I’ll pull that off.

I’m sensing echoes of my treatment course with the urologist, where we try a whole bunch of stupid things that aren’t going to make a lick of difference, but at least we can be said to have tried something. And then we’ll get tothe invasive as hell tests and conclude that welp, there’s weak muscles there and that’s probably the problem. BECAUSE I HAVE A NEURODEGENERATIVE DISEASE. Because of course actually listening to me in the first place and taking into account I have a disease that’s killing all of my muscles is just crazy talk. My urologist outright stated I had no strength in my pelvic floor and then still wanted me to try Kegel exercises. YES LET’S EXERCISE MUSCLES THAT DON’T EXIST SURELY THAT WILL SOLVE EVERYTHING. My gastro apparently is focusing on the loose stool part of the equation as if somehow that’s magically going to help me retain poop. I guess the problem WILL go away once they get me constipated enough, and we’ll just ignore that that comes with its own problems. And as with my urologist, I am 100% certain that the ultimate solution is going to be surgical, it’s just a matter of waiting for the specialist to arrive at that conclusion.

So there.

This last Thursday was my follow-up with Dr. Goslin. I reported in everything that I just told you about, and she agreed that the ultimate solution will probably be surgical. And in the worst segue ever, like, “oh, speaking of surgery… ” she asked if I had given any more thought about a feeding tube.

I hadn’t come prepared to have that conversation. I repeated what I had told the pulmonologist, that I knew I was going to get one eventually, but I hadn’t really thought of it happening yet. She repeated his point about the breathing being the accelerator of the timeline; it’s not that I can’t eat on my own, it’s that my breathing is declining and is making the surgery more dangerous. She said that she really liked to strongly consider it once breathing hits 50%, and I’ve been hovering around 48% for a little while. It’s a bit different from the 40 to 20% that the pulmonologist told me. Whereas he had told me somewhere between six months and two years, she made it sound like, “so what are you doing on Wednesday?”

Even though I’ve been mulling over since last clinic, I still haven’t actually visualized that happening in a practical way. It’s an idea, not a visualization yet. It looks like I have to start that process now. She pulled out a rubber torso that had feeding tubes installed in it, to show me what to expect. She went over the basics on how to take care of it, and stressed that I’m welcome to eat for as long as I can, this won’t interfere with anything, it just needs to be flushed with water once a day. She gave me a photocopy of a photocopy of a photocopied pamphlet titled “So They’re Telling You to Get a Feeding Tube”. It was written by one of her patients and was actually pretty informative. It talked about who pays for supplies, how to get supplies, recommended procedures for care, what to expect from healing, and things like that. It kind of read like one of my blog posts if I’m being honest. Without the sarcasm. I’m grateful it exists, and really, really grateful I’ve got friends who’ve dealt with them personally, both as patient and provider to answer all the questions I know will come up.

It’s an outpatient surgery, but she said they like to keep you overnight for this one, just to make sure everything’s okay. It’ll be my first overnight stay in a hospital ever. For now I’m thinking it over and tentatively making some minor plans, but nothing set in stone yet. We’ll talk about it more in depth next month at clinic. I need to schedule it around the clinical trial that I’m still participating in. It shouldn’t be that big a deal. Physically. Psychologically, emotionally, it is a Very Big Deal.

It’s just that with the catheter, this, and a colostomy bag in my future, I’m beginning to feel like a reverse porcupine. A little more Capital-S sick. A little closer to the end of the journey. It’s hard to think about. I don’t want to think about it. I’m death positive as hell but that doesn’t mean I’m in a hurry. I’ve still got a lot more to say. More I want to do. So much more food I want to eat. None of this means I can’t do those things, it’s just a reality check that my timeline is more abbreviated than I want to admit.

And that really sucks.

In the meantime, I’m going to eat all of the delicious food that I can and get remarkably fat. That’s gonna rule. March is Portland Dining Month, where a lot of local restaurants serve a special menu on the cheap, and this year I’m going to take SUCH advantage. Food is awesome. Eat something delicious on my behalf, darlings, because food is amazing and so are you.

Bra Ra Ra

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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.

Aftermaths

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Well hello. I survived the surgery, it went really well and I am recovering nicely.

…Except for the part where the nurse used chlorhexidine on my hand when starting my IV. Despite the bright red wristband stating I am allergic to chlorhexidine and latex. So that was a weeks worth of itchy fun.

…Except for the part where the IV came out of my hand during surgery so they had to start a new one on my other hand.

…Except for the super nasty UTI that happened and went undiagnosed for a couple of days because I figured it was just irritation from the catheter during surgery. That sucked, really really bad. PROTIP: urine should not be dark and cloudy with red bits floating in it. Get that checked out.

…Except for the doctors really, really not fucking around when they say OxyContin causes constipation. Do not ignore this advice when they tell you to get lots of fiber.

…Except for my hands being unable to fasten and unfasten the elastic bands that keep the bag strapped to my leg. So the bag just kind of kicks it with me in bed.

…Except for the night before last when somehow the bag became unscrewed? And I secondhand peed the bed?

…Except for my body apparently deciding overnight that since I don’t HAVE to use the toilet to pee anymore, getting up off of the toilet is not a thing we get to do. Not easily. Helluva thing to discover at 1 AM due to getting stuck sitting on the toilet for 45 minutes until I finally managed.

All sarcasm and bitterness aside, this thing is fucking amazing. I wore proper underwear for the first time in almost a year. I did not have to put on a pee pad for the first time since October 2017. It’s taking some getting used to, of course – being able to feel balloon inside my bladder has taken some serious adjusting. I also wasn’t really expecting it to be literally a slit cut in my belly with a tube shoved in. There is no connector, no futzy plastic anything, literally a slit with a rubber tube sticking out of it. Thank your lucky stars I’m not about to show that to you. I now have the most hardcore body piercing EVER.

There’s a couple of things I have to do to fully adjust, including hitting up my seamstress friends to help me build some kind of a cover for this thing – so that it doesn’t accidentally become unscrewed again, I don’t get super sweaty having this plastic thing that doesn’t breathe sitting against my skin, and I don’t have to look at a literal bag of urine sitting next to me all the time. I want to get some fat quarters of spooky fabrics and make cute little bags to stick the bag in and disguise it somewhat. Anything to make it look even a little less than exactly what it is.

For now though, I am obscenely grateful for having only to get up once or twice to empty this thing a day, which only involves me getting in the wheelchair and rolling up to the toilet to dump it. I don’t have to transfer all if I really didn’t want to, I have a receptacle to empty the bag into while still sitting in bed. But so far it hasn’t been a problem. I’m not sitting in my own pee right now. I can’t tell you how amazing it feels to be DRY. How awesome it is to be able to wear my cute underwear again. It was worth it. Absolutely no question about it. I’m so glad I did this.

And I’m sure you’re super glad too, because this is hopefully the end of my urine stories. I’m not even gonna make the title a pee pun. You’re welcome.

Clinic Day

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Okay kids, it’s that time again. Let’s have the update on the status of things.

My first appointment of the day was with the social worker from the ALS Association. I was introduced to a new employee, and I had been asked if this new employee could sit in with me for the whole day to get an idea of what clinic is about. I’ve had a couple people sitting with my sessions; I think I’m a good candidate for kind of easing someone into the job. I’m not so far down the road that I’m a bitter, depressing train wreck, I’ve got a pretty good attitude about things, and – as evidenced by this blog – I am not opposed to sharing. He was a really nice guy and understood a lot of the gaming and geek references that J, Gecko, and I shot back and forth with each other throughout the appointments as usual. There was nothing new to report on my part for this segment, the house search is still ongoing, the appeals for help are coming along, I’m doing okay here.

Second appointment was with Kelly the dietitian. Because she is also my friend, she had brought me birthday presents of two graphic novels from a series I adore called Lackadaisy. Happy birthday to meeeee! The official part of my appointment went smooth as usual, I received my typical good-natured lecture about drinking water instead of soda, otherwise everything checked out. I remarked to Tony, the observer, that presents aren’t usually part of appointments, but I would never be upset if they were. ALS shuld come with fabulous prizes. Or at least an administrative assistant. Kelly is incredibly thoughtful and it’s a pleasure to be her friend – not just for the comic books.

Third appointment was nursing. I had a few things to talk about here, things that would be addressed by the corresponding specialists as the appointments happened that day, but it’s always good to give the nurse a heads up so she knows what to follow up on.

Fourth was respiratory. My absolute least favorite appointment of all time. We started with the standard cough check, which is still great. Second thing we always do is check my inhale capacity, a test where I put a mask over my nose and mouth and inhale as sharply and strongly as I can. I’ve always done really well on this test. The respiratory specialist agreed with me and told me my sucking was great, upon which J, Gecko, and I did our level best to not lose our shit laughing. We are 12. The last test is the worst one, where I lean into a mask again with my nose plugged and after a couple normal breaths I forcibly exhale as much as I can and keep exhaling and keep exhaling until I feel like I’m breathing myself inside out, and then sharp inhale. I do this three times. During this appointment, the test machine said “great effort!” on all three tries, which it doesn’t always do, so I felt really encouraged. Until she told me my breathing had actually still gone down a bit. Not as dramatically as before, though. Still not dangerous levels yet, but still very much declining. I tried not to get discouraged and mostly succeeded.

Appointment number five was neurology with Dr. Olney, the new partner for Dr. Goslin. I mentioned to him the biting my tongue in my sleep thing, and how I’ve been using a night guard to get around it, and he asked me a very obvious question. “When did you start your new medication, again?” I replied it was… Right around when I started biting my tongue. Derp. It had not occurred to me at all that it might’ve been the side effect of the new medication, but when he asked that question it seemed very obvious that it was the problem. It’s still not a dealbreaker, just like the weird sleep pattern is not dealbreaker. That is the price I pay for not spiraling into a black mood at 4 AM every day, and it is worth the price of admission. I also talked to him about bladder control, or in my case the absolute lack of, as a follow-up to my previous conversation with Dr. Goslin. She had told me what my options were, and I went home and researched the mall because that’s what I do, and I had pretty much made up my mind how I would like to address this. I’m getting really sick of wearing adult diapers, they’re expensive, and they don’t always work properly and I wind up wetting the dang bed anyway, and I’m getting preeeeeeetty tired of sitting in my own pee. I have two options for a catheter, one is the traditional Foley catheter which is just a tube snaking into your urethra and a bag attached to the other end. It’s functional, but prone to infection, and for women it’s not something that is fun to have to sit on at all times. The other option, the one I’m now pursuing, is called a superpubic catheter. It’s where they punch a hole into your abdominal wall, connecting a tube through there, which drains into a bag, same as the other. It’s reversible, it’s not a horrible procedure to have to endure, and it would eliminate the need for a very uncomfortable tube in a very sensitive place. We talked about my previous experience with the urologist, how I stopped going to her because it was obvious she had no idea what ALS was. (Here’s a clue: we are not going to fix my problem by doing Kegel exercises.) He gave me the names of two urologists that have worked with their patients before and were trusted. I’ll keep you posted on how this goes.

Sixth appointment was pulmonology. The last clinic had me meeting with the pulmonologist also,and so this is a new part of the Clinic routine. My standard physician was on vacation in New Zealand (jealous!) so I had seen a practice partner. Who I actually really liked, though my regular doctor isn’t a bad guy at all; his partner has a better sense of humor is all. He had grabbed my breathing machine records from the net, because my AVAPS automatically uploads my sleep reports to the cloud and that’s not even creepy at all what are you talking about. He was overall pretty happy with my results, but still chided me about needing to use my machine for more than four hours a night to get the best results, and more than 60% of the time. I was properly chastised and promised to be better about using the machine. Which I stayed true to by the way. So far. J came over and helped me this last weekend with cleaning and organizing, and now my AVAPS doesn’t live on the arm of my wheelchair or the corner of my bed anymore, it has a proper home now, on a shelf just out of reach when I’m lying in bed. Since I have to wake up properly and sit up to turn the machine off, I’m not pulling the mask off after only four hours anymore. I also was encouraged to keep up with breath stacking. Because of course I was.

Seventh and final appointment was with PT/OT. I didn’t get to see Deb unfortunately, but I like all the specialists. We breezed through the appointments since I didn’t really have anything to report. We tried the grip meter on my left hand just for funsies, and it registered nothing at all. “…You got it to move,” she told me encouragingly. But not enough to register as a grip. Meh. I promised to hit them up when I start needing help with other things, like toileting and whatnot. I’m still doing pretty okay on my own with those things, for now. But I will be very happy when I don’t have to get up to pee anymore. I can still do the necessary things, but only having to do them once a day instead of four or five will be a very welcome change.

So that’s what we did. And that’s how it went. Steady as she goes, with nothing new to report except a 6% decrease in breathing capacity. They didn’t even have me bother talking to speech therapy this time; I never have anything to report. Oh, there is one weird thing that happened. We did the FERS scale and my self-evaluation actually had me at 32, higher than the 26 I was last time. When I got the letter afterwards, they hadofficially put me at a 30. Which is still higher than it was last time? I have another appointment with Dr. Goslin in a few weeks and I will ask her about that then.

And now you are up-to-date.

Dear Ableds,

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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

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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.

Retrospectacle

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Obligatory 2018 retrospective post coming right up!

This last year seemed particularly unkind. I honestly can’t recall another year in my life in which I was so tightly wound, all the time. My stupid disease actually seemed like the least of my worries. I distinctly recall thinking on many occasions, “please can this bullshit be over so that I can just focus on actually dying?” Our current political climate was a massive source of stress, every day, all the time. I had set up filters for my Facebook and other social media to automatically purge all mention of that asshole currently terrorizing us via the White House just to maintain some shred of sanity. Even still, it intruded too much of my reality, too often. I lost entirely too much sleep just panicking on behalf of those I love, and myself, and total strangers. Too many nights spent in abject fear as I watched my country descend into absolute fascism. In our last session together, my therapist actually told me that his wish for me in the coming year is to stop giving a shit. I can do literally nothing about any of this, and I would be so much happier if I could just let it go.

But then, he conceded, if I did somehow managed to pull it off he wouldn’t even know who the hell I was.

January I got my new wheels. She is named the SS Opportunity, because even before I get in that chair it weighs almost 400 pounds, and so if you do not get out of my way when I am in it you will have an opportunity to experience being in a wheelchair for yourself. I didn’t start using the chair right away, primarily because I had no real way to transport myself and the chair to places I needed to be. I needed a wheelchair van first. I also got a new boss at work, my sixth in 10 months. He came with a bold set of new ideas and new plans and promptly set about firing all of my techs and replacing them with new guys. It’s a given at that company that every time there is a new leader, they have to put their fingerprint on everything. It was a lot of shakeup and stress I really didn’t need.

February was particularly ugly. There was a very abrupt end to a very young life that fucked with me more than I can tell you. It’s not my business to tell you. I questioned a lot of things. My mom had a heart attack. Fuck February. The end.

March. I had my first clinic day of the year, my hands were officially decreed garbage as they registered nothing at all on the grip test. My estranged father, whom I had not spoken to or heard anything about in 20 years, died. I paid for his cremation. That’s all I have to say about that. Stephen Hawking died, and so ALS lost its one celebrity.

April was my fourth Sadiversary. I also had my 43rd birthday. We road tripped to Arizona to buy a wheelchair van, because they averaged five to $10,000 cheaper there. The road trip was entertaining, we learned a lot about how ADA regulations are apparently just a suggestion in Arizona, and no one who writes the rules actually has any fucking idea what it’s like to be in a wheelchair. Spoiler alert: a grip bar behind the toilet is absolutely useless and in it self does not make for an accessible bathroom. The van was at the mechanics within the month for a door closing issue. However, thanks to having the van I was able to start taking the SS Opportunity to work. She makes everything not only easier, but sometimes possible at all. I had gotten used to doing without a drink at work, or waiting until I was nearly peeing my pants to use the bathroom and planning what else I could do while I was up, because of the effort required to do those things with the walker. With the chair, I could just… Get up and go whenever I wanted. Wherever I wanted. It’s kind of nice to be able to put in a full day’s work and still have a little bit left of energy at the end of the day. I had forgotten what that was like.

May was blissfully uneventful.

In June, I put in notice at work. I lost a lot of sleep over that decision, and popped more Ativan than I’m probably comfortable admitting. My manager was kind of the opposite of devastated, which cemented in my brain it was absolutely the right decision to make. I gave him almost 3 months notice, and set to work making sure I did everything I could to keep the wheels at my job turning after I left. I was asked many many times why I bothered, and towards the end I started asking myself the same question. I freely admit though, to enjoying heaping spoonfuls of schadenfreude (I am fucking amazed that this program knows schadenfreude) when the CEO of that company was ousted for unethical behavior. I watched an amazing, very positive and life-affirming concert, and a burlesque show. June was pretty all right.

July saw me making official announcements to coworkers about leaving, and many many things happening at work that cemented it was a great idea to be leaving now. Which is not to say that I didn’t obsess and stress and freak out about it anyway. So much of your identity is tied into what you do for living, and I had – am having – a really hard time letting that go. The world at large collectively lost its shit over plastic straws. It had been quite a long time since I had seen so much ableist garbage on my newsfeed, so I guess we were overdue. I spent a good chunk of time educating idiots on exactly why plastic straws are a literal lifesaving device. I also got the bill for my wheelchair this month, and was eternally grateful yet again for the health insurance my job provides. I could have bought a very, very nice car for what this thing cost. I got angry again that the insurance company does not consider the lift feature to be necessary when they refused to pay for it. Still, I’m very glad I opted in for that anyway. I use it probably every time I sit in that chair, and it makes everything so much easier. It’s rather nice to be able to look people in the face when you’re talking to them; you really do become invisible when you sit in a chair. If you’re not eye-level, people forget about you.

August was when I stopped actually reporting to work. August 31 was my last official day, with three weeks of vacation to follow. So much angst. August was also when Jillian happened at me with her rotten cabbage juice bullshit. It takes a lot for me to get that angry. It was nothing however, compared to the anger of all y’all. That was a delicious thing to behold. I am grateful for you every day. I will never, ever doubt that you all have got my back.

September was the end of my working career for reels. It still doesn’t seem like a thing that genuinely happened. I had my last clinic day of the year, and my breathing was officially rated problematic. So that was fun. I had a team walk with me in the ALS Association’s walk to defeat ALS, and that was a very uplifting experience. As usual. And again, if I ever had any doubt that I have a tribe that supports me, that doubt is gone. I am loved and supported, and I will never forget that.

In October, I gave a death positive talk at an art show. It is probably one of my favorite things I’ve ever done. I’m genuinely proud of what I wrote for that show, and hopefully I convinced some people to fill out their advanced directive. Death positivity continues to become a mission in what’s left of my life. Halloween is my favorite season of the year, and we did a whole lot of celebrating and shopping and buying delightfully useless decor and stuffed animals. October is also Jay’s birthday, and I simply don’t have words to convey how important that man is in my life, and how grateful I am that he remains my best friend and my strongest ally and my chief supporter. I literally do not know what I would do without him.

November. Elections. Just… So much. I don’t think I really slept at all in November. It was the start of a pretty serious slide into depression that I am still fully immersed in. Hence my silence. Having nothing to do is waiting very heavily on me, but I also don’t really have the energy to do anything specifically. I’m not ready yet to look for volunteer work or anything. I bought a new laptop. That was pretty cool.

December has been spent desperately attempting to make something of what my brain has fixated on as my last proper Christmas. Also be around for the next one, but my hands won’t be able to open presents, or wrap gifts, or bake a fruit cake. Leaving my bed much less my apartment has become an ordeal. I fully realize a lot of that is the depression talking. But most days, things seemed pretty dark. Because they are. I have a terminal disease, and sometimes I just can’t find that sense of humor about it. Most days I can. Some days, it’s even actively hilarious.

Today marks the new year. Even if I die in the next five minutes, there is one number higher on how long I’ve lived. I have no fucking idea what the coming year brings. All I know for sure is there are a couple of concerts I have tickets to. In September, my short-term disability runs out. I really, really, really hope I have a permanent place to live by then. At some point during the new year there will be a post all about that I’m sure. Meantime, I have some eggnog and some snacks and a warm bed and very cute cats and no plans to do anything tomorrow but sleep and play video games. Can’t complain. I will take 2019 as it comes, and simply pray that it is kinder to me than last year was. I hope that for all of us.

Happy new year, my darlings.

Accommodations

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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.










Surreal

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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










Catching My Breath

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Jeez, peeps, it’s been a month since I’ve posted. Good thing this blog isn’t monetized or anything. A kind commenter left me a little prod about being so quiet, and I realized I should get off my ass and say something. Or…get ON my ass, since writing involves that position. It’s been awhile that I’ve been in a place to be able to pace and dictate or whatever.

I digress.

The first couple weeks of October, I don’t even have an excuse for not posting anything except perhaps laziness. Well, obviously laziness. No ‘perhaps’ about it. The last two weeks were kind of rough if I’m being honest. Politics caused me a lot of sleepless nights, and I wish I had it in me not to care about any of it, but I don’t. I often say the one silver lining to this disease is that I get to check out early, whereas the rest of you people have to stay and deal with this. I won’t be alive to see California slide into the ocean, or Handmaid’s Tale cease being fiction, or Auschwitz’s rebirth in my own goddamned country. There is a small grace in that. It still doesn’t prevent me having sleepless nights just absolutely freaking out over everything I cannot change and crying a lot. I wish the only thing I had to worry about was my actual disease.

The main thing going on in the last couple of weeks has been transportation problems, and breathing problems. I had an appointment to get my new AVAPS sleep machine, which I was very nervous about because it’s a whole new goddamned concession to this bitch of a disease, and I’d asked J to go along with me. Unfortunately, when we got there I was not able to get out of the fucking van because the automated door mechanism decided not to work. At all. We were used to it being a flaky bitch and sometimes not latching closed properly, but this was new. The door would not open all the way even with J pulling it open manually, so the ramp could not extend. And so I sat in the parking lot missing my fucking appointment while Jay feverishly tried to figure out how to free me. The door mechanism has been kind of flaky pretty much since I got it, and she’s been in for repairs twice already. J managed to get the door to open all the way, but he missed work the whole day instead of just a couple of hours while we took her in for an emergency appointment. The mechanics there were able to temporarily Band-Aid the problem.

By pretty much breaking my door.

Their fix to my door not automatically opening was to simply cut the cable that opened it and turn it into a manual door. Which is not, of course, a fucking fix. It was a preventative measure to keep the cable from snapping of its own accord and shearing apart the motor. We got a proper appointment later that afternoon to see what could actually be done, and after having my van for over an hour they explained that the entire mechanism would need to be replaced. Oh and now also the cable. Which, after the last time the van was in for service, we already knew replacing the assembly was going to be the next step which is why I had previously asked them to replace the entire assembly in the first place, and they never called me back. A month ago. So yes please can we actually REPAIR THE FUCKING VEHICLE.

This was all after getting pissed off that the mechanic would only talk to J and ignore me – because I’m just stupid dumb woman who doesn’t know anything about vans LOL. J very politely asserted that it was only MY name on the paperwork and registration and I would be the one paying for the repairs, so really he should be addressing me, not him (J is a champ). Thankfully, the mechanic did speak directly to me after that. But seriously. Dude wasn’t even old, he really ought to know better. They always do that; they will look at the paperwork read my name, and then turned to Jason and address him as Mr. Ross (THAT IS NOT HIS NAME EVEN) and explain what needs doing.

BITCH I AM SITTING RIGHT HERE AND WILL BE PAYING FOR THIS HI HELLO HOW ARE YOU. FUCKER.

Moral of the story is that we agreed the door assembly and cable need replacing. I kind of had to insist that we do that – the mechanic was seemingly trying to talk me out of it like, the door is working? (HI NO IT IS NOT BECAUSE IT IS A MECHANICAL DOOR THAT IS NOT FUNCTIONAL AT THIS TIME) The repairs will be expensive? (I HAVE A FUCKING WARRANTY) We got our van back, with the door still needing to be manually opened and closed before the rant will work, and the mechanic sets to ordering the parts that were needed and getting warranty authorization for repairs.

…A week later he calls to inform me that the warranty is declined for the repairs, because my contract does not cover those parts. He thought it sounded fishy and asked to see my actual contract. I have agreed the hell it doesn’t cover the freaking door, I paid $2000 for that fucking warranty it had better, and agreed to send him a copy. Turns out my fucking contract does not cover anything but the ramp itself, and the drive train. Literally nothing else. I paid $2k for them to not fix anything but a catastrophic failure THANK YOU ARIZONA MOBILITY FOR YOUR USELESS GODDAMNED SERVICE CONTRACT. So I am on the hook for $1000 repair. I have an appointment to go ahead with the repair on Friday, and then yesterday the ramp itself decided it doesn’t want to work either and refused to work for a moment. And then did work. Much like the door itself would sometimes decide to close and sometimes not. So I probably get to look forward to getting that repaired soon as well. Theoretically at least that will be covered. IN THEORY.

After missing the breathing appointment, I came to find out that the respiratory folks would actually have been able to come to my apartment in the first place to set up the machine. THIS IS USEFUL INFORMATION I WOULD HAVE LIKED TO HAVE. YOU KNOW, BEFORE. So we set up an appointment for them to come to me, and last Tuesday they delivered my new machine. It is, as promised, the most powerful noninvasive ventilator you can get. It costs $6400. If I can prove compliance – by which I have to use this machine at least four hours a day for 21 days out of 30 – then my insurance will pay for it outright. Otherwise I’m going to have to rent this thing for $700 a fucking months Covered by insurance, sure, but my co-pay is about to reset in January and I will be goddamned if I am paying for this fucking machine on top of everything else. I’ll save my precious out of pocket money for the $17,000 a month infusion meds that aren’t helping. I guess. So I just need to prove to Providence I am going to use it when I sleep. Pinky promise.

That’s turning out to be much easier said than done.

This machine is indeed much more powerful than my old CPAP was. Too powerful. It’s kind of like breathing from a turbine engine. It has a ramp function, where it will slowly turn the air up, but even that is not exactly comfortable. By which I mean it is genuinely hard to breathe with that machine on. I can’t take a little bit of air, it’s like drinking from a fire hose. If I try to breathe shallow to prevent the machine inflating my lungs like balloons, it freaks out and tries even harder. Eventually I have to pull in a huge lungful of air, which the machine helpfully cuts off the airflow after a second and I have to breathe through my mouth to catch my breath entirely. I have fallen into a routine of putting the mask over my face and then just checking out the Internet or watching TV or something for an hour or so before bed to try to get used to it before I am actually attempting to sleep. Like, distract myself and trick my body into being cool with my new overlord breathing on my behalf. It’s not really working. The only way I’ve really been able to sleep with it is if I medicate myself either with Ativan or Ambien first. Even then, I wake up fairly often. I find myself constantly checking the machine to see if I’ve hit four hours of use yet so I can pull the mask off and sleep comfortably.

This machine has taught me what my actual limit for life is.

As I lie in bed struggling to breathe, I know that when this becomes my existence, and not just an artificial effect produced by a machine, I am going to be done. I cannot live that way. It is abjectly miserable, and it is impossible to do anything else when you are struggling so hard just to get air into your body. That is not going to be a life worth living. When the machine is doing my breathing for me, and there is nothing in my brain except an animalistic fight for control over the oxygen coming in and out of my lungs, that will be the time to say goodbye. Because that is not a life.

For now though, I have the ability to pull the mask off. I counts down the time until four hours has passed, when I can pull the mask off and sleep properly. For now life is still great. I have ideas and plans. Including a very important plan to call the respiratory specialists and see if there is some adjustment that can be made to make me a little less abjectly miserable when I’m trying to sleep. To make sleep possible at all without taking potentially addictive medications. Friday I will take the van in and try to get it limping along for a little while. I literally just needed to last a couple of years. Sunday, I get to do something really really awesome I am super excited about. I have things to do. People to see. Life to live.

One breath at a time.










Clinical Anxiety

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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.










Hypocrite

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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

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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.










Saddiversary Part the Fourth

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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.










Brutal Honesty

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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.










Accommodation

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Fun fact: I AM A GIANT NERD.

You already knew this. Probably. Almost definitely. If not, welcome to me; I’m a giant nerd.

Most every Wednesday, I play a table top role-playing game with a group of guys that have become good friends. We are virtual murder hobos, adventuring and killing monsters and arguing amongst ourselves about which monsters need killing, and it’s a lot of fun. I absolutely adore the group. The only hitch at all is that my stupid disease gets in the way a lot – I’ve had to miss a lot of games because of appointments, or a couple of times I’ve fallen and hurt myself, or sometimes my mana is just too damn low to deal, or once or twice Sadbrain said nope. Luckily, they’re very cool about me missing games; they understand. We had a talk once to just make sure that it wasn’t that I was not enjoying the game but was too polite to say so, so I was making excuses; once they were assured that I absolutely enjoyed the game but my disease is stupid, we were all good.

Part of that hitch is getting to the place we game. It used to be at the storyteller’s house, which had two steps and no rail. It was…not fun getting inside. Luckily before that became an impossibility, we switched to another player’s house, which has just one step. Much easier. Still an effort, and some days a Herculean one, but better. This last Wednesday, I had low energy, and I sarcastically complained to J as we were heading over, “Tim needs to get a fucking ramp.” If J didn’t drive a little car, I’d probably have bought one of those portable ramps to just carry around with us for these occasions. It would definitely make things easier. I’d never actually expect someone to modify their home for me, obviously. But some days it probably would be the final straw in deciding if I had the energy to go to to game or not. Stupid disease.

We pulled up to the house, and everyone was standing around outside, which was…odd, because it was cold as hell. We usually start game at 5:30, but we were told tonight was a late start, so maybe everyone had just gotten there. I got out of the car, and they all kind off…turned to face me. Matt, the storyteller, told me that they all understood that I had hella circumstances and that it made it really hard for me to get to game sometimes. For a moment, I thought, “OH shit, they’re kicking me out of game because I’m unreliable. Well, I can’t really blame them.” He continued to say that they really appreciated the effort I made to show up, and that they all wanted to make sure that I’m able to continue doing it for as long as I can, so…they all parted to show me something behind them.

Guys.

GUYS.

THEY BOUGHT ME A FUCKING RAMP.

To get in to the house. A ramp. For me. And they even put stickers all over it.

For me.

One of the worst things about acquiring a disability is feeling like you’re a burden. Your friends and family have to make plans around your diminished abilities, suddenly old traditions have to be abandoned. Even though everyone insists – INSISTS – that you’re fine, they want you there, they’re happy to make the changes, you can’t help feel guilty that they’re missing out on cool things because of you. A lifetime of Sadbrain convincing me that I’m not worth the effort in the first place does not help the matter, and I’ve worked my whole life to make that voice be silent, with very mixed results. In the meantime, events are missed, changes are made, things are rearranged, and my friends and family do their best to accommodate me and tell me it’s alright.

Funny word, accommodate.

It can mean providing sufficient living space, or making a compromise, or adjusting to something new. It means somehow going out of your way for someone. In my world it’s usually got a slightly cynical sister word attached, “reasonable”, when dealing with work and places of business. Reasonable accommodation. Legally doing the absolute bare minimum in order to convince ADA enforcement laws that you’ve done …something. (I’m a little bitter, yes)

When it’s your friends, though, and you know they sure as shit didn’t HAVE to do anything, that they made an effort because they legitimately want you around, and here is absolute proof? Yeah I totally teared up. It was an amazing thing. A selfless thing. An important thing.

It makes dealing with it easier. It makes being alive easier.

It makes it WORTH it.