My friend posted this on her facebook recently.
Every time it shows up in my feed, I want to respond “walk”.
..But not everyone would find it as funny as I do.
My friend posted this on her facebook recently.
Every time it shows up in my feed, I want to respond “walk”.
..But not everyone would find it as funny as I do.
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.
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.
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.
Let’s talk about drugs, baby
Let’s talk about THC
Let’s talk about all the good thing and the bad
About five years ago, I documented my experience and thoughts about marijuana. They were… Not exactly complementary. More a diatribe, if I’m being honest.
My conclusion then, and remains today, that I fully support the use of cannabis for whatever purposes the user deems fit, and I fully support it being legal everywhere for all times.
I still don’t like being high, and THC does nothing to alleviate any of my symptoms. There was another experimentation with THC between then and now, and I found an edible that got me high without making me sick, and it just cemented the fact that I really don’t like being high. So I gave up on cannabis entirely for a very long time. It’s done some very amazing things for people I love, and I completely believe it has amazing medical benefit potential and wants more research, for sure. I’ll not disparage its use for anybody else, it’s just not for me.
I really wish it were. I really wish it worked for me.
I’m currently on three different drugs for mental health. Two for depression, one for generalized anxiety. It’s difficult to say if they’re working or not really, because I have legitimate reasons to be depressed and anxious and so it’s hard to tell what’s genuinely a good day and what is the medication making things okay. They’re definitely helping; I have less sad brain days with the meds than without them, for certain. ALS just puts everything on hard mode, and this year has exacerbated all of that beyond belief. Of course I’m depressed and anxious, I have a terminal disease, but I suffered from those brain problems even before I was diagnosed. When those three drugs don’t quite cut it, and some nights they don’t, I have a scrip for Ativan to take the edge off. It definitely helps. It zones me out and usually negates any panic attack I may be having at the moment. Which is nice.
The problem is I don’t always want to zone out. If I’m having a full-blown panic attack, then certainly, yes, please God, zone me out, make it go away and let me breathe. Quickly. But in general, my level of anxiety is far less dramatic than the mind racing, can’t breathe, holy shit I think I’m actually going to die RIGHT NOW panic attacks. An ongoing low level panic attack perhaps, a buzzing in the back of my brain, 1,000,001 things clamoring for my attention and every single one of them stressful and sad.
There’s just so much to think about, things to do, things to plan for, everything coming at me at all times from all sides. It’s really easy to get overwhelmed. The tiniest little side thought can lead to a spiral of panic and fear. A television show that shows someone in a hospital, connected to machinery and unresponsive? My brain automatically thinks “that’s going to be me someday, and how I do not want that life for myself”. WHEE DOOM!! Wondering if my loved ones will have the strength to let me go when it comes to that. A character finding it hard to find the right words to say will lead me down the road of thinking about how I’m not going to be able to speak at all someday. Usually I can fight the downward spiral, but not always. Some days I lose.
I have so much to do. I have so many plans to make, things to document, wishes to make known and official, legal obligations to fulfill before I die. There is never a moment in which I could not be doing something to help my loved ones through my death. Items to be sorted. Organization to be done. If I don’t actively fight it, I fall into an anxious despair just thinking about everything that I have to do and being so overwhelmed I end up doing none of it and feeling trapped and never feeling like I can just… take a breath. I sit here and do nothing all day, knowing full well that my time is short. The weight of those obligations makes it impossible for me to relax sometimes and the crushing anxiety of all of these responsibilities stifles me constantly and I spiral.
Some days I just want to not think so hard. Turn my brain down a little, not off. Sometimes I just want to breathe a little bit. Not necessarily forget everything, but just an emotional step back and a breath of fresh air. Get a little space between me and my anxiety so it doesn’t seem so insurmountable.
So what’s a girl to do?
A month or two ago, I was out doing errands – properly social distanced and very careful of course, I’m not a covidiot. My friend and I were both pretty stressed out, in general because… gestures vaguely at everything… and because of the pressure of the errands and danger being out in the world. One of our stops was a store called New Seasons, which is like a small local Whole Foods but it doesn’t suck. While we were there, we noticed they had a special on CBD drinks and we had both been curious about it. Now, I had tried pure CBD before as a tincture and it did nothing for what I was trying to do with the time. It didn’t affect my headaches, my twitching, my panic attacks. But I know a lot of people that swear by CBD, and extol its virtues for everything – particularly stress. It’s becoming much more prevalent and accepted for its benefits. So that being said, and everything being what it is, my friend and I figured what the hell, and bought one each and drank it.
SELTZER WATER AND POT IS NOT A GOOD TASTE BY THE WAY. VERY BAD. EVEN IF YOU SAY IT IS BLACKBERRY FLAVOR IT IS POTBERRY.
And a little while later I felt… Okay. A little more relaxed, maybe. Feeling a little more capable of handling things at the moment. We were able to finish up our errands with a bit more calm.
Relaxed until the aftertaste hit of course. BLEAUGAHAUGHERGH. POT TASTES SO GROSS!!
Pot burps notwithstanding, it was much more in line with what I wanted. Not brain-dead, not staring at the walls, just a little more emotional wiggle room. And I fully concede that it may entirely be a placebo effect. But if it works, then fuck it. Even if I just believe that it works and is doing nothing. GOD BLESS THE PLACEBO EFFECT.
So I guess I’ve made peace with cannabis. I found something that does something. It does not, however, do one major thing that I really wanted it to do – I really wanted something to stop my brain over thinking before I fall asleep. Because THAT’S when the anxiety and depression get me. I stare at the ceiling and my brain spins for over an hour before I’m able to fall asleep finally. I wanted CBD to take the edge off of that and let me just rest, maybe. Nope! Turns out CBD can cause nightmares, apparently? Anecdotally, mind, it’s not been properly studied (get on it, Science!), but it apparently does with me. I already dream weirder than most, my subconscious does NOT need any chemical assistance with coming up with unpleasant situations involving insect faced people in a gorefest speakeasy shootout or menacing floating toasters in my bed about to touch me. So apparently I can’t take it right before bed, which is too bad. I’ll be sticking with Ativan and Ambien for that when things get rough.
But for now, at least I found a little daytime breathing space. Which is amazing in itself.
I will fully accept that minor victory.
I feel badly that I don’t post as often as I used to, because it’s getting harder, but I know it sucks to have to refresh a blog over and over in the hopes there’s something new.
Should I set up a mailing list? Is that something you’d be interested in?
That was the longest break I’ve ever taken. Between no longer having a job, and COVID warping the reality of time itself, the last three months have gone by in an instant and an eon at the same time.
It’s been long enough I think I need to do a general check-in. So that’s what this blog post will be all about. If you don’t care, that’s totally cool and I will have something else for you very soon.
My FRS scale has gone down a point or two. I’m beginning to notice weakness in my arms now. I can still wiggle my fingers and grasp things between my first finger knuckle and my thumb. That’s going away though. My laptop is becoming too heavy to manage. I can still just about move my toes, I can’t kick with any real strength, but I can stand as long as I’m leaning heavily on something else. This means I can use the walker for a step or two, but I haven’t tested anything longer than a couple steps lately. There’s not really any way to pick me up off the ground if I fall, here, so I’m not going to take stupid risks. I’m still able to transfer myself to my wheelchair, and to the toilet from there, so I’m still pretty independent. I can still write a little bit, especially if I’m using a special pen that one of my blog readers was kind enough to send me. Along with some lovely edible treats. The pen she sent me is a kind of crutch for my finger, and it is much more easy to control with fingers that are weak. I’m not going to be writing any new novels anytime soon, but I can still sign my name and fill out short forms.
For the longest time, we weren’t able to test my breathing because Covid. When you’re dealing with a disease spread by droplets and aerosols, the last thing you want is someone purposely and forcibly blowing air into your face. Last month during my medical trial though, after getting a Covid test to prove I was clean, we were able to test my forced vital lung capacity. The Covid test sucked so bad. They dug around in the very back of my sinus cavity and I felt like I was a dead body being prepared for mummification and they were going to pull my brain out through my nose. I was coughing and sneezing and I watery for a couple of hours after the test. It sucked, is what I’m saying. The last time we tested my breathing back in March I was at 52%. When this all started I was at 115%, to give you an idea. This last trip I tested at 46%. Quite a drop. I am definitely feeling this change, I am so much more easily out of breath. I am still breathing okay this, I only noticed when I exert myself somehow. If I lose my breath it takes me a bit longer to catch it back. There’s no need for breathing apparatus yet, except the AVAPS machine that I use at night. I’ve still got some time.
I need help cutting up my food, but I can still feed myself. I have not begun choking on food or having things go down the wrong pipe – at least no more than average people do. It’s awful when I do choke on my own spit though, because in order to get my breath back I have to take these huge ragged breaths in to be able to cough it out, and it makes this horrible death rattley noise when I do it. It scares the living shit out of everyone around me, and I don’t have the breath to explain to them that I’m all right – as long as I’m choking I’m still breathing – but it’s gonna sound like I’m dying for a minute. Which is not to say that I’m not also scared, being unable to breathe is one of the worst things in the world, but I know that the choking is only temporary. And even if I do pass out, there’s a couple of minutes before any possibility of brain damage sets in, and my airway will probably be cleared out by somebody attempted CPR and up be fine again. I have not had to make any concession to the disease with regards to how I eat. So far, we haven’t had to make any concessions to the disease in regards to what I eat, either. I am still fat under medical advice. I have an obscene amount of junk food in my room for snacking on. I mean, obscene. I’ve got a little three drawer shelf unit full to the brim, and two square baskets that slide into IKEA furniture full. I have a habit of craving something obscure, and then allowing myself to get that thing because fuck it, I’m dying, but the only way I’ll be able to find it on Amazon or wherever is by the case. So now I’ve got a case of whatever. People also gift me edible things all the time, because they are amazing, and they don’t want to burden me down with material things but they do want to give me a present. Candy is perfect in that regard. And I love it. I love it all. The problem is I don’t actually eat that much junk food, so will have a couple of pieces of whatever and then it just sits here while everything else piles up around. Hence, three drawers and two baskets. This isn’t a complaint, at all. I love candy. And obscure Australian treats, and macadamia nuts, and pop tarts, and marzipan, and Lara bars, and Apple chips, and every other thing that is currently shoved in to my little space. Love it.
My voice is becoming affected. If I talk for too long my voice goes a little wobbly and raspy. This is most likely due to my breathing more than anything, there isn’t enough breath being forced out when I speak to make my voice strong. I can still enunciate properly, and get my point across. But something’s happening there.
ALS doesn’t really affect your cognitive behavior, which is all at once the best and worst thing about this disease. You retain your faculties, but eventually you become trapped in your own body with no way to communicate, still perfectly aware and understanding of everything around you. There are some cognitive issues possible though, and I’m wondering if I’m having problems with that. It seems recently that I have much more of a problem getting my point across because my thoughts are so scattered. It could quite possibly also just be ADHD or something, but I’ve never noticed it so much as in the last year. I have lots of other ADHD traits so who knows. I was never formally diagnosed with that but I also never formally sought out a diagnosis for that. My brain has always gone very quickly in circles and I seem to say something completely unrelated to what we were talking about; but I do have a definite path that I used to arrive at what I said. We were talking about chocolate, which makes me think about dogs being unable to eat chocolate, which makes me think about a cute dog video I saw with a dog biting at a stream of air from a compressor, which makes me think of really windy weather, which makes me think of another video of an umbrella rolling down the beach with dramatic music, which makes me think of going to the beach. And that’s why when you say “I really like this dark chocolate”, I respond “we should go to the beach soon”. There’s a path there, a definite way I arrived where I did, you just don’t see it. Lately I am having trouble even explaining that path out loud, even though my brain understands completely.
This one. This is the one I’m struggling with the most, if I’m being honest. I have the absolute worst time being unable to help myself. All my life I have been entirely self reliant, and any help I accepted was on my own terms. I obviously don’t have that luxury anymore. Friends come over and help me unpack, and I can literally do nothing to help them, and that eats at me. Even though I know they don’t mind, and are even happy to do so. I sit here in my room and see something that needs to be done, and it would take me all of five minutes to take care of it forever if I were able-bodied. But I’m not. And so it must become this hour-long effort to get someone here with enough time to spare, and explain what needs to be done, and then have them do it. And so much remains undone because it seems so stupid to call someone in here just to push a thumbtack in that had fallen out of the wall. It is frustrating in a way that I have never thought possible. And it absolutely eats at me to know that it’s just going to get worse. More than my own death, I fear being a burden. And my friends and family can say all they want, that I’m not a burden, but I will never be able to believe that. And that’s just how it is. Still, I have many more good days than bad days. I try to take things at face value as they come and be gracious about the help I do receive. I mean, I’m still going to completely obsess over it mentally and examine it from every angle in minute detail And stare at the ceiling until 3 o’clock in the morning thinking about it, but… um… Where was I going with that.
We are slowly but surely getting into this house and settling in. It is taking an excruciatingly long time because of the three people living here only one of them is able-bodied and he has a job. Thanks to some amazing friends who have come over to lend a hand, we are much further along than we would otherwise be. For example this is what my study looks like now!
Neato torpedo. The place is actually beginning to resemble my living space now. We’ve been pulling things out of boxes that I haven’t looked at in over five years because they were packed up from the house that I owned and then just put into storage while I lived in the apartment. It’s nice to be able to go through these things, and get rid of so much. My friend Tamra did all of the work you see up there. She is absolutely an amazing person and I’m lucky to know her. We have some semblance of the living room, rather than boxes piled upon tables and couches, you could almost sit in it. We are still discovering the um.. Character that this house has. Like the skeleton of a rat in a rat trap in the crawlspace. And the very interesting decisions or more owners made in regards to the electrical wiring. And duct placement. Our back porch is still a mess of boxes and other things needing to be sorted and there’s an entire storage unit out there, full of even more stuff from my old storage that we need to go through. We are taking it a little bit at a time. This house feels much more like a home now, already, and it will only become homier.
I am still participating in a medical trial which necessitates traveling by plane to San Francisco once a month. It’s usually a two or three day trip, but it seems to take half the month to prepare and recover from it. As per my previous post, traveling in a wheelchair is not easy. I can’t tell you much about the trial itself, except that I do undergo a spinal tap each and every time. It’s… becoming routine. Which is not something I ever thought I’d say – spinal taps aren’t something I would ever think someone could get used to? But here we are. I can, however, slip you this link which details some of the preliminary findings of the trial in general. The results are looking pretty good.
I have to keep all of my mental and emotional facilities trained to what’s immediately around me, because the outside world is pretty fucking scary right now. I live near Portland, which the president is trying to paint as a lawless expanse of criminals and terrorists, but really there’s protests happening in two square blocks in the inner city and the damage is mostly confined to the federal buildings. Driving through downtown is not unsafe. The president has promised a tax break should he get reelected, which would mean disability becoming unfunded by next year, so I’m pretty scared about that. I’m really scared about the slide into fascism that our country is taking and the wannabe dictator going unchecked when he says really dangerous shit. Some really scary shit going on outside and I can’t do anything about it, so I do my best to bury my head and just not think about it. Sometimes that works. Sometimes it takes Ativan. Otherwise I spend every waking minute angry and terrified. I cannot wait for a time when a week can go by and I don’t even think about the president. I hope I live to see that.
Overall though there’s nothing too horrible or too awesome to report. I’m settling into the new normal at the house, settling into the new normal of my disease day by day, and settling into a sort of routine. One of my absolute biggest stresses was finding a house, and getting this place has helped immeasurably. So I don’t really have all that much to complain about. Overall I’m doing pretty good. I still feel like I have some time. I still have things to do, things to say, cats to pet.
And all this junk food to consume.
I’m not dead yet!
Darlings, the move was a DISASTER. But it’s over! Now I just have to deal with my guilt over not being able to help unpack. J the Magnificent bought me Animal Crossing to occupy my brain instead, so my life the last month has been this
J is doing what he can, and people are offering to help, but so much is dependent on other things – for instance, I can’t have most of those boxes unpacked until I get shelves installed because I have no places to PUT things yet. My awesome brother is helping with the shelves (as well as refinishing the floors before we moved in, and installing sink and toilets, and moving an entire wall) but he’s on-call as a tow driver so he can’t come over regularly to help.
So it’s moving sloooooowly.
This might well take the rest of my life (har har) but we’ll get it there. In the meantime I’m set up enough to be comfortable in my nest of a bed, the cats are introducing themselves to each other, and I have animals to cross.
I’m doing okay. I hope you are, too.
Seven years ago today, I had just started cleaning and painting my new home. I’d had keys for a scant two days and there was a lot to be done. Seven years and two days ago my dream of homeownership had finally come true. It was pretty much my dream home. Huge backyard, a shed AND two car garage for storage, five bedrooms, huge kitchen. I had such dreams for that house. I was going to convert one of the bedrooms to be a kitten room and foster kittens. I was going to install baker’s racks I my kitchen and get serious about patisserie in my spare time. My office was set up for studying for my computer science degree in the works, a spare bedroom-slash-library for guests, my bedroom with a ceiling like the night sky. It was gonna be a giant garden in the back and a haven for the snakes I was delighted to learn lived there. I was going to install bat houses.
Six years, eight weeks and one day ago I received news that changed everything.
One of the first things to hit me, after the whole “holy shit, I have a terminal disease and I’m going to die” thing was “oh no I have to sell my house.” My new dream house was two story you see. I was beyond crushed, I was devastated. I hadn’t even had it for a year and now I was looking at having to give it up. And unfortunately giving it up was not a question. I tried every scheme I could come up with. There was no way to put a master bedroom downstairs, no way to expand the downstairs bedroom to encompass a roll in shower, no way to put a lift in to get the wheelchair upstairs. The hallway was just too narrow. The layout was just too open downstairs. The only aspect of choice I had was, do I sell it now? Or do I wait until I’m physically forced out of the place.
I chose option one. The thinking was, I could get out of this house and purchase a new one while there was still ability in me to decorate the new place. If I waited until I was wheelchair-bound and had useless hands, I wouldn’t be able to make the new place my own. So I sold it pretty much right away, at a nice profit, even. It wasn’t even on the market a week. I had owned my dream house for just over two years. I rented an apartment as a temporary measure, because I knew it would be a little bit before I could find the perfect place. The new place had to be single-story, had to be wheelchair accessible or at least have the bones to renovated to be so. And crucially? It had to be affordable on what I was going to make while on disability. I had estimates of what I was going to be earning, and at the time Danielle was going to move in with me so I would have help with the mortgage.
It has turned out to be a nigh impossible task. The economy recovered in spades, and suddenly I couldn’t afford literally anything in the area. People were coming from California and other places with cash to purchase homes and I simply could not compete. Real life then conspired to interfere, Danielle and I split as friends, so I was suddenly going it alone. Jay decided to move in with me and so all of his needs also needed to be addressed in the house search. My stepfather passed away, leaving my mother unable to afford her home, and so I moved her in with me in my 2 bedroom apartment and we weren’t sure what was going to become of that, if her living with me would be a permanent solution or not. My needs became very, very complicated, my buying power dwindled to almost nothing thanks to the booming house market and the pittance you earn on disability, and my “temporary” apartment became more of an unwanted permanent fixture.
Staying permanently in an apartment was never an option though. I need a roll in shower. Apartment complexes tend to frown upon you doing demolition in their units, so installing one here is not an option. Ideally I wanted to stay in the same-ish area so I could keep near my support network. Leaving Portland metro, thus leaving the care of Doctor Goslin, was NEVER an option. I need a bedroom big enough for my bed, wheelchair, and a lift to eventually get me out of bed into the wheelchair. This place simply does not have that much space; I play a stupid game of Tetris with my wheelchair, walker, cat scratcher, and closet door every time I get dressed. And even after the economy recovered somewhat, and even though Jay was willing to commute up to an hour each way to work every day so I could extend our search parameters to include BanjoLand (where our neighbors were GUARANTEED to hate our liberal asses), there was simply nothing out there for me. Everything we found was falling apart, or the master bathroom wasn’t even big enough to get a wheelchair in, much less turnaround in, or the side bedrooms where J and my mother would be staying were closets.
Quick shout out here because credit where credit is fucking DUE. My real estate agent Christina Griffith is one of the most patient people on the face of this planet. I half expected her to give me up as a client at any time. It was frustrating for us both, but she never quit on me. I didn’t have an option to quit and she did, and I’m grateful as FUCK she did not take that route.
All I wanted was a place to live until I died, one way or another. My last breath in my own bed, with my cats beside me. No more transition housing. A place I could get around in my wheelchair, with place to store all of the necessary equipment (like a huge-ass Hoyer lift) that will become part of my life as the disease progresses, with space for the people taking care of me. (And the option for grocery delivery because I’m in a wheelchair and mom is blind and J can’t do everything.) I didn’t care what kind of dwelling it was. House, condo, manufactured home, as long as it was accessible, and affordable, I could literally give a shit. It has been the single greatest stressor in my life ever since I was diagnosed. No hyperbole. All I want is a place to just be and be allowed to die in and not have to worry about my belongings getting packed up and my cats transitioned a to new environment separate from me while I still drew breath. The actual disease and its effects have actually been secondary to all of this. My life has primarily been all about finding a home.
It’s taken five years.
One thing I’m definitely grateful for is all of the people helping me look. My realtor is amazing, as I said, (seriously if you’re in the Portland metro area look her up) and I had lots of friends and family keeping an eye out for me, as well as automated searches on places like redfin. This lead came from my psychiatrist of all people. He’d been keeping an eye out, but most of the places he found were way out of my price range. A client of his was sadly transitioning to a care home, and his wife had to sell their home. It was a depressing thing for them but could be a godsend for me – it was already ADA set up. Ramps to everything, even the backyard, doors wide enough for a chair in every room. He gave me the owner’s email address, and I didn’t have high hopes to be honest, because there was no way I was going to be able to afford this place. I contacted them anyway, and the wife turned out to be a total peach. She answered all of my questions gracefully, but sure enough their asking price was $50,000 more than I had been approved for. I told her thanks anyway. She said hang on. let’s talk. It meant a lot to her that we’d been introduced through my shrink, and she really wanted the accessibility features to be of use to someone. Let’s have me look at the place, she said, and we can discuss it.
I didn’t get my hopes up. I didn’t dare.
We toured the place, and it was such an awesome feeling to be able to actually go into a house I was looking at purchasing, and wheel around freely with nothing off-limits to me. Typically when we go to look at a house, I stay in the van while J and Christina go inside and then report back to me. All I’ve had to go off of was their opinions and maybe a video tour taken on Christina’s cellphone. But here, here I was able to see for myself. And here I was able to see myself living in this space. This could be My House. The space was big enough. There are already ramps everywhere. The shower even was already a roll in shower. It was not quite perfect, the other two bedrooms were still kind of small. But with a little renovation we could make things work. So not daring to get my hopes up, I checked with my bank to see if maybe I could get approved for just a little more money. It still wasn’t what they were asking, but it was all I could afford. The bank said OK, and I presented an offer tens of thousands less than they’d said they were going to ask, fully expecting a counteroffer or flat-out refusal.
They said yes.
I get the keys tomorrow.
It’s been a very fast roller coaster ride, having to scramble to get all the paperwork together, and proving that even on SSDI I can make the mortgage (thanks ENTIRELY to Intel’s retirement plan), getting everything coordinated and submitted and 10,000 signatures on triplicate and witnessed by two rabbis and a chimpanzee, but it’s all sorted. It’s taking literally everything I have saved and my 401(k) and what little stock I still owned, but we’re doing it. There’s gonna be some work to do, we need to move a wall to make one of the bedrooms a livable size for J. There’s painting of course, but that’s just cosmetics. My fondest wish is to see what putting in central AC will cost, because the placement of the windows are not great for the window units that I have and I am a huge baby when it comes to heat and it’s going to SUCK when I’m too hot and unable to push the covers off. I’m not sure I’m going to be afford AC, but it’s a dream I have. Buying a house is incredibly expensive and there’s always going to be one more thing to purchase that you never thought of. I have to hire movers. Not that I don’t have a squad of willing volunteers, but for one – COVID is still very much a thing, even though America has seemed to decide that it’s boring now so we’re just not gonna quarantine anymore – and for two, most of my friends are willing but not necessarily able. I’m 45 years old and most of my friends are around the same age bracket. We can’t just haul shit around willy-nilly anymore. And my adjustable bed weighs a ton and I’m not subjecting people I love to that nonsense. So I’m doing what I can and praying that I am able to afford it all. So hey, if you ever thought about dropping a dime into my GoFundMe, now would definitely be a good time.
I called all of the utilities today to transfer them into my name, and every single one of them wished me congratulations on the new house. It’s a magical phrase. My new house. I was sincerely beginning to despair it was ever going to happen, and I would be relegated to sponge baths in my bed until I needed to be transferred to a care facility. I’m so happy it was wrong. I’m so happy this finally happened. I’m so glad I get a permanent address at last. I wish it hadn’t taken so long, and I’m no longer able to do all the decorating myself, but I can be a damn good supervisor and project leader. My friends are amazing and they will help me. I will have the space worthy of dying in, at last.
My final resting place.
What even is time anymore.
I had a stray thought last night that it had been a couple of weeks since I’d updated the blog and it was probably time. I checked my blog and saw that the last post was on April 8 and I had a little baby crisis of time – holy shit it had been almost a month! It was longer than I thought! I had better get on this. I resolved to make a post the next day when I woke up, and went to sleep. Now that I’ve opened up my blog to post a little something, I’m actually awake enough to do the math and realize it had been only 12 days. Hardly a month. Calm down, past me. We’re fine.
I have absolutely no concept of time anymore, apparently.
To be honest? I started losing it when I was officially unemployed. Whilst working, it was a key part of my job to be keenly aware of what day it was, what week it was and how it relates to the rest of the workweeks, what financial quarter we were in, even. After little time away from my job, the days kind of started to blend together. It does that when you’re unemployed. The days of the week are the first thing to cease meaning anything. Or more precisely, weekends are the first concept to go. Everyone else is celebrating because it’s finally Saturday and you’re here thinking… Yeah okay, and? The days of the week all blur together eventually. And then the months. There is no clear delineation anymore between the months of the year. January? That was like a week ago wasn’t it?
Quarantine, of course, has brought the entire world to that level. Except for the “essential workers” being martyred on the altar of capitalism, a lot of us simply don’t know what time it is anymore.
And let me tell you, that is a really weird way to live when you know for a fact your time on earth is limited. “Hurry up and wait” has taken on such a different meaning. As I touched on in previous posts, there’s a part of me that feels very much like I am wasting precious time by sitting here and doing nothing. And there is that part of me that thinks if I had a complete choice in the matter, sitting in bed petting my cat and playing on the Internet is pretty much what I’d be choosing to do anyway. So imagine that… with an underpinning of urgency. There are things I really need to have done, and soon, and they’re not getting done. Now, when I have all the time in the world until I suddenly don’t. I have a will to file. I have an inventory of all of my belongings to document and set up for disposition for after my death. Holy FUCK do I have a lot of belongings. I’ve been trying to buy a house for the last five years – I should probably be starting to think about packing up. (Moving. Yeah, that’s its own post.)
Of course I need to be a little kind to myself, and realize that my capability is limited. I’m not who I used to be, I can’t just get on a tangent and sort and refile all of my paperwork in an afternoon like I used to. I can’t just decide to reoragnize and pare down my cosmetics. I have the time, I just don’t have the ability anymore. Unfortunately, I do still have that inclination. And so many afternoons I sit here in bed looking around and thinking about all of the things that need to be doing that I could do if only my hands worked. It’s not like I’m being lazy and not getting things done, I just don’t have the capability to do them myself.
I also need to give myself a little bit of shit; because while it’s true that I cannot do these things myself, I have a whole lot of friends who would happily come over and help me do exactly those things. Friends who would happily hang out with me for little while and put my stickers into albums for me while we chit chat about everything and nothing. I had a friend come by and completely clean out and reorganize my pantry for me, therefore I know these people are available and willing, I just need to ask. And I am so very bad at asking.
Obviously right now quarantine doesn’t make asking for help possible. So I have the inclination, but not the ability, and not even the ability to call for help. My only possibility is to sit here, and feel time slipping away from me while none of this gets done. I have so much to do, and so much time to do it in, and I just can’t. Time and I have a very complicated relationship right now. Someday, sooner than I’d like to think, time will run out. And there’s nothing I can do about that. There will definitely be many things left undone. I am guaranteed to not have as much time as I think, much less as much time as I want.
So in the meantime, I spend my too much/not enough time petting my cats, and playing on the internets, and stressing about everything I still have to do. I think right now with quarantine, a lot of people are feeling some version of this. And we all need to be a little gentle with ourselves right now. A little forgiving. A little softer. Not all of it’s going to get done and were going to have to be okay with that. We are all in trauma response mode right now, and for me there’s a weird sort of calm that comes with this disaster pandemic. I feel like the playing field is little more even between the world and me. Like, a lot of people understand where I’m coming from now that simply didn’t have that capacity earlier. And we all sit, and wait, and feel like we should be doing something with our time and not doing that thing and feeling incredibly guilty for it when really? We shall be congratulating ourselves for just existing right now. Things are hard. Time is its own thing, and it’s going to do whatever the hell it wants to.
I hope regardless of what’s happening in your too much/not enough time, you’re being safe and being kind to yourselves. And patient with each other.
Much love, from 6 feet away.
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.
So. 2020, huh?
I came into the new year at a handicap – no pun intended. The holidays weren’t particularly kind, it feels a bit like I didn’t get a proper Christmas and with my Christmases so limited I really felt robbed. The new year was particularly rough. It was a prime chance to feel incredibly sorry for myself. Everyone was reflecting on the last decade, which forced me to do so as well, primarily reflecting on how much the last 10 years took from me. I lost my romantic partner. I lost my best friend. I lost my house. I lost my health. And then everyone started talking about the new decade, and all of the marvelous opportunities it was going to present, and I’m just sitting here thinking I don’t GET another 10 years. It is supremely unfair.
So yeah, not a great start. And then the world just conspired to keep everything as shitty as possible. The idiot in charge nearly started World War III with his playground bully behavior. Australia caught fire. And now this pandemic. Everything’s going wrong. It’s very easy to feel helpless and hopeless.
At the risk of sounding like a motivational poster though? I’m in a uniquely privileged position right now. Terminal diagnosis aside, I have a LOT to be grateful for. I’m very worried about COVID of course, but not in any immediate way. I know damn well with my already hindered breathing, catching it would basically be a death sentence. But I’m smart. I’m careful. Those people I physically interact with are also careful. I worry about it in a vague way, but all of the day-to-day concrete problems that are affecting most people aren’t touching me right now and I am incredibly grateful.
I don’t have to worry about losing my job, because I’m already medically retired. I don’t have to worry about keeping my job or finding a new one when this is all over. I don’t have a job to force me to interact with the public on the daily.
I don’t havr to worry about making my rent, because I’m on a fixed guaranteed income. Until they take away Social Security and disability benefits, I am secure financially. These stimulus checks everyone’s talking about would be nice if they happen? But I don’t NEED it in a strict sense. I have savings. Granted, they are earmarked to buy a house, but if things went seriously pear-shaped I can float us for six months. This pandemic has not been a financial hardship for me.
I don’t have to worry about cabin fever, because I’m an introvert by nature. I’ve always been self entertaining. Being pretty much bedbound for the last year or so has honed my skills to a sharp point. I have a lot of things to entertain myself with. Though of course now that I’m told I can’t socialize, I’ve been wanting to. I’m not an introvert or an extrovert apparently, I’m a jerkivert. I’m more like a cat than I thought; I do crave interaction but only on my own terms. And if you tell me I must remain away that’s when I want to be around. Meow.
I don’t have to worry about supplies, because I’m naturally the sort of person who buys groceries for 12 people even though there’s only two of us. Right before all this went down, I had bought a case of toilet paper and paper towels. There is food literally overflowing my pantry, I have a freezer outside in my storage unit chock-full of food. We are well stocked for a couple of months of absolute isolation if we had to be.
I don’t have to worry about emergency supplies either, because I have so many incredible people in my life who have made a point of asking me if I need anything. I’m already well acquainted with mail order, so that’s also been a blessing, but if I needed anything in emergency I can think of six people off the top of my head who would go get it for me. I am safe and secure and well positioned for whatever needs arise.
I don’t have to worry about a support network, because I already have the best one. We keep each other safe and protected and loved and secure. We do kind things for one another whenever we can, and I quite literally do not know how I would survive any of this without them. This includes you also, dear reader. I’m reminded time and time again that the kindness of strangers is a very real thing. You keep my faith in humanity alive. You give my optimism a serious reason to exist. There’s definitely precedent.
And so until – or IF it even happens – until myself or my loved ones contract the virus, this whole pandemic thing hasn’t fazed me, really. I’m in a good position to deal with this. I’m actually in a pretty good position to support others who are going through it, and that’s a massive blessing. Or stroke of luck. Or happy circumstance. However you want to view it. Things aren’t that bleak right now. It could have been so much worse for me. I’ve said it before, I will say it again, probably 100 or more times on this blog even – I am a very lucky woman.
I’m so fortunate to have what I have.
So how are you folks holding up? Anything I can do to help you?
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.
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.
Generally speaking, there are two reactions to a terminal diagnosis. The first is to try and cram as much life as possible into the time remaining – you become obsessed with completing bucket list items, reaching out to estranged loved ones, and generally doing all of the things that you swore you’d get around to but never did. Your remaining life becomes a frantic race against time. The second reaction is to go about life as usual; either through pragmatism or complete denial, nothing really changes about your day-to-day.
I’m absolutely in the second camp. I’m a complete pragmatist. And honestly, I just don’t have the energy to be at first kind. There are a lot of things to do that I would have liked to complete, but I’m not going to devote my life to checking off boxes. I will go out of my way to see more shows and hang out with those I love more, but really that’s about the only concession I’ve made. I’d have loved to go to Japan, and I could probably still make that happen if I REALLY wanted to, but now it’s just too much of a pain in the ass.
To a lot of people this probably seems like I’m wasting what little time I have left. I spend the vast majority of my time at home, in bed, screwing around on the Internet, and hanging out with my cats and my best friends. This is exactly what I would be doing if I did not have a terminal disease. It suits me just fine.
While I’m screwing around on the Internet though, I usually have something playing on the television. There are a set list of things that are probably on my television at any given time, even when I’m sleeping. Nature shows, Mr. Rogers, Bob Ross, science programs like Cosmos or anything by Brian Cox, Invaders Zim, Monty Python. Those are the main ones. There are also movies that I will watch over and over like Clue, The Last Unicorn, Nightmare Before Christmas etc. Even if I’m not really paying attention, it’s on-screen. I don’t tend to watch new programs very often, even though I have a lot of time in which to consume new media. I’m literally in bed all day, with nothing better to do. I could be watching all kinds of new things. But no. It’s David Attenborough.
My friends expressed concern over this habit, not as a criticism of my lifestyle so much as concerned that one day I will feel like I’ve wasted what time I had. Sometimes I think about that, but overall I’m really not worried about it. I’m doing exactly what I feel like doing. I did, however, talk to my therapist about it, about how I kind of feel like at least I should be watching something different. But the usual shows are just so comfortable. He told me it’s because they’re safe; I know what’s going to happen, there are no nasty surprises waiting for me in it. My real life is complicated enough and I just want to give my brain a break.
My therapist is an extremely clever man.
He’s absolutely right – that’s exactly what it is. I have a real hard time reading any new books or watching any new television because I don’t know what’s going happen. I’m nervous that this new media is somehow going to somehow betray me. It might seem a little bit ridiculous, but due to the way that my brain is wired, new media is very much like meeting someone new. Wholly unpredictable and it feels unsafe. If someone introduces me, I have some kind of endorsements and some kind of assurance that things aren’t going to go sideways, but usually I hang out with the ones I already know because I can relax.
The other day I got brave and binged the entirety of Fleabag.
This was a very bold decision on my part, a little reckless. I’d seen some clips though, and a lot of people told me it’s hilarious, and it’s won a lot of awards. So I watched all of it.
I genuinely regret watching the show.
It’s a black comedy. It is brilliant, the writing is amazing, the actors are wonderful and it absolutely deserves all the praise and awards. And it is ABSOLUTELY not for me. There are genuinely hilarious moments in it, but for the most part it’s just watching this woman’s life become a complete train wreck. Every time she gets a little bit of a break something knocks her three steps back. She’s kind of a toxic person so she digs her own holes, but most of the people in her life are also just genuinely horrible people who say and do terrible things to her. Because I’m an optimist, I kept watching and expecting things to turn around for her. But no. The show ends in a complete heartbreak. And it completely destroyed me.
I was up watching until 5:30am and I was up until 9am crying like the heartbreak was my own. And for the entire next day I was in a really deep melancholy. Because of all of this I have a renewed dedication to watching the same shows over and over and over. I’m safe there. That sucked. My life is indeed entirely too dramatic already. The only drama I need to add to it is whether or not that cheetah catches up to the zebra.
I may be wasting my life away, but I’m comfortable. And I’m perfectly okay with that. Boring is sometimes the best thing in the world. Some people need to spend the rest of their time climbing mountains and composing operas, and I’m just not like that. I chose to work for as long as I could, and I will happily spend the rest of my time playing video games and eating junk food and petting my cats and learning about cool creatures.
Programs about arthropods are my favorite.
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.
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.
…Why is it most of these stories are about Jack?
Anyway, we’re chatting about VR rigs, like ya do, and I mention my mom can’t use them because she’s legally blind. He asked how that happened, like, did she stare at the sun or something (because Jack is Like That).
“It’s age related,” I told him. “Hehe it’s literally called Age Related Macular Degeneration.”
“Ugh I hope I don’t get that. I get feebles floating in my eye and that’s bad enough.”
“Yeah. It’s genetic, too, so I’m dodging THAT bullet! Hooray!”
“Though points in your mom’s favor, she’s not likely to see Death coming unless he’s trying to do a sneaky and flank her.”
It’s a panther that pounces from the dark places, claws raking across your body, physical pain created from shadow. You’re suddenly on the ground, mind screaming, emotional wounds fresh and bloody. It feels like it came out of nowhere.
It’s a python, winding around you and taking your breath away. You feel like you’ll never breathe again. How did you manage to do it, before?
It’s a chameleon that changes its color, surprising you by seemingly showing up out of the blue. It’s always been there, just blended in. You only just realized it’s been there all day.
It’s a peacock, demanding attention with large displays and raucous calling. Notice me. You can’t help it. There is nothing in your life so important as this feeling.
It’s a spider on the wall, offering you a choice. Do you get up and kill it? Do you pretend it’s not there? Or do you gently scoop it up, carry it a moment, and set it down somewhere safer?
It’s a parasite, eating you from the inside, until you’re a malnourished shadow of your former self. You don’t notice its gradual effects, but your friends notice. To them it’s obvious.
It’s a mosquito, annoying and just out of swatting distance. It leaves a hundred tiny wounds, and they all itch. Sometimes, it’s satisfying to just scratch and scratch and scratch.
It’s a seeing eye dog, guiding you through your transition into a new life and showing you how important small moments are. A small bump to remind you not to go to the restaurant you had your first date in, don’t drive through the intersection where the accident happened, don’t listen to That Song. Not yet.
It’s a pigeon, showing up absolutely everywhere, making a total mess, and discouraged from existing at every turn. But sometimes. Sometimes? It’s nice to sit in the park and feed it for a little while anyway.
Eventually, it’s a fish in a tank – familiar and part of the background of your life, but occasionally you’ll notice a movement and turn your attention there. It’s no longer a panther, just a little colorful part of you, beautiful in its own way.
And always. Always. It’s the elephant in the room no one talks about.
First, a quick check in about the research study in San Francisco. That’s still going on, still going well, and now that it has shifted to once a month rather than every two weeks, things are calming down and much easier. My brother Gecko is the kind of advocate a girl dreams of. He’s been amazing throughout all of this.
So, clinic. Well.
It wasn’t an easy one. My breathing is only a little weaker than it was before, so that’s good. My overall limb strength is about the same. My diet is great, my weight is stable, although I am the heaviest I have been in my entire life and I hate it, I’m doing what I should. Overall, each of my many appointments went as per usual except for two.
For my one-on-one with Dr. Goslin, I had to finally admit that over the past few months I have been losing bowel control. Admit to someone besides J who I tell every-fucking-thing to and my mother, who’s had to help me with the um. Fallout. There have been a few major accidents, and many minor ones. It’s exactly as my bladder incontinence happened, I don’t have an urge to go at all until I suddenly do, and that when I stand up to go I’m just… going. It was a fucking humiliating thing to talk about, never mind in such clinical detail and with two other people in the room with us. But those two other people were J and Gecko, people who need to know exactly what’s going on with me. She listened carefully, asked a lot of questions, and then told me that she’s never had another ALS patient completely lose bowel control. Accidents, sure. But you have two sphincters and one of them is involuntary, so there’s no reason I should lose complete control.
So that means I’m either a medical anomaly and an ALS first, at least for her, or I have another severe, separate medical issue happening.
I did not take this news very well. I’d already worked out before Clinic that the next step was going to be to speak to a gastroenterologist, and I did as much research as I dare and realize that it’s there is…really not a lot to be done about losing bowel control. I dared not delve into the humiliating tests that were likely to be performed; this has already given me too many panic attacks these last months. There are artificial sphincters that can be installed, but they only work some of the time and are not considered worth the surgery risk. Or there’s the colostomy route. Punch yet another hole in my abdomen, another medical accessory to be maintained. A very large piece of my dignity destroyed, at any rate.
…ALS sucks, don’t ever get it.
So I came away from that with a referral to a gastroenterologist, and a referral for an MRI of my lumbar spine and pelvis, just in case there is something obvious going on. Maybe the lumbar punctures I’m getting for the medical study screwed something up, though I’m pretty sure it started well before I was in the study. Maybe it exacerbated it, I don’t know. In the meantime, I was told to stop my magnesium supplement, and I’ve started taking Imodium every day. We have a plan of attack.
The last appointment for the day was with my pulmonologist. He looked over my chart notes so far for the day, and then asked me if I had thought about survival measures when the time comes and I’ve progressed too far. Do I want to be on a ventilator, that sort of thing. I told him I thought very long and very hard about these things, and so I have a POLST form (Physician’s Orders for Life Sustaining Treatment – basically an Advance Directive, but with a lot more legal weight).
“Well, if you’re considering a feeding tube,” he told me, “you had better consider that sooner than later.”
I… was not prepared to hear that. I blinked at him.
“It’s your breathing,” he explained. “Ideally we want to do the feeding tube when your breathing is somewhere between 40% and 20%. After that it becomes much too dangerous to put you under anesthesia. Right now you’re at 48%, so we’re looking at somewhere between the next six months and the next two years.”
Which, I knew this surgery was coming. Even back in the early days of diagnosis, when I looked at the roadmap ALS typically leads you down, I knew I would be getting a feeding tube before actually needed it. And I knew it was because my breathing would make the anesthesia too dangerous to wait until there was actual need. I just…
… I just wasn’t expecting it so soon.
I FULLY realize that soon is relative. I’ve had ALS for five and half years now, way longer than I have any right to expect. My progression is very slow, and I am very very very lucky. And I am very very grateful. And I expected this talk, eventually. It was just a really harsh reality check. A metaphorical punch in the gut. This is really happening, it’s really progressing, and the end stages are a lot closer than I’d like to think.
So depending on how the gastroenterologist appointments go, I may have three holes LITERALLY punched in my guts. I joked with my therapist that I’m going to need a little sidecar for my wheelchair for all of the medical gear coming out of me. I’m not really fooling anyone with the catheter bag at this point, I think. If anyone gives me more than a casual glance they can totally tell that’s what’s going on. Add to that a colostomy bag and a feeding tube, and it’s going to be nothing but baggy sweaters for me ever again.
A little bit of my old life chipped away. A new normal to adjust to. New change, new life, less a bit more dignity and control.
For now? On with the thing. This hurts, but it’s hardly the end of me. I spent last week feeling very sorry for myself, and now I will do what comes next. I will follow up with the GI and hopefully learn and control my obnoxious new symptom. I will continue with the study until it is completed or until I can’t. I will adjust to my new life of being completely on government financial support. I will embrace my new normal because it is my life and it is still possible. I’m still here dammit. And whether or not my dignity is intact, I will keep breathing until I can’t. And that’s not for some time yet.
I still have so much to do.
It’s been a long time since I’ve done a general symptom check-in to let you know where my functionality is at. I also don’t think I’ve ever talked in-depth about what the ALS-FRS scale is, at least a quick peek through the tags comes up with nothing, so I think this is as good an excuse as any to go a little deeper into something that is pretty dang integral to my life now.
In the simplest terms, the ALS-FRS is a way to numerically represent my decline. It stands for ALS Functional Rating Scale, and it’s a series of 12 categories that cover the basic symptoms of ALS. You rate your functionality on a scale of 0 to 4, with 4 being completely unaffected, 0 equals no functionality at all. The FRS very helpfully provides examples of each category’s numbering. At the end, you add up your score and that gives you a numerical score that tells you how badly ALS is impacting your life. By tracking this number over a period of time, you can also determine your progression rate.
The last time I took this test was for the clinical study I’m involved in, about 3 weeks ago. I gave my answers verbally so I don’t know what the tally was, but my last Clinic Day’s score was 29 out of the possible 48.
Let me show you around the ALS-FRS while I tell you about my current state!
|Normal speech processes|
|Detectable speech disturbance|
|Intelligible with repeating|
|Speech combined with nonvocal communication|
|Loss of useful speech|
For a lot of people, speech is the first thing they notice going wrong. A little bit of a slur, being slightly mush mouth, nothing too dramatic. That’s called bulbar onset, as opposed to limb onset like I’ve got. Fortunately I haven’t really noticed anything amiss in this department yet so my score here is four.
|Slight but definite excess of saliva in mouth; may have nighttime drooling|
|Moderately excessive saliva; may have minimal drooling|
|Marked excess of saliva with some drooling|
|Marked drooling; requires constant tissue or handkerchief|
Again, this is a pretty common bulbar onset symptom. A friend of mine who had ALS had to keep a handkerchief in her hands at all time so as to blot up the drool. The same mechanism that doesn’t allow you to speak properly means you can’t swallow very well either, so there’s nowhere for your saliva to go. Another common thing this symptom causes is choking on your own spit a lot. Fortunately I don’t do that anymore often than I ever did. So for now, my score is a four.
|Normal eating habits|
|Early eating problems-occasional choking|
|Dietary consistency changes|
|Needs supplemental tube feeding|
|NPO (exclusively parenteral or enteral feeding)|
Slightly different than choking on your own spit is food going down the wrong pipe. That will eventually start to happen a lot to people with ALS. Eventually you move to a thick liquid diet (thin liquids are too easy to aspirate) and then eventually you can’t swallow at all so you have to make a choice about supplemental tube feeding or starving to death. Fortunately that decision is some distance away for me. My score here is a four.
|Slow or sloppy; all words are legible|
|Not all words are legible|
|Able to grip pen but unable to write|
|Unable to grip pen|
The key word here is functional. This scale doesn’t measure in terms of strength but rather in terms of what activities your symptoms are preventing you from doing. It doesn’t matter that my hands curl up when they’re at rest, it only matters that I can or cannot hold a pen and sign my name. It’s a very practical scale. More medicine should be based on practicality in my opinion. Unfortunately for me I do not have a perfect four in this category. I have to sign my name by writing from the shoulder rather than from the wrist in order for it to be legible at all. I can very painstakingly write a short simple note, but it’s gotten to the point where not all the words say what I meant when I wrote them. It’s hard to tell what I was going for sometimes. So right now my score here is a two.
|5. Cutting food |
|Somewhat slow and clumsy, but no help needed|
|Can cut most foods, although clumsy and slow; some help needed|
|Food must be cut by someone, but can still feed slowly|
|Needs to be fed|
Here the scale diverges. There is a 5A and a 5B. It depends whether or not you have a feeding tube. My hands fail me at this point to where I can’t cut up a steak or serve myself from a common dish. I can stab at food with a fork, or spoon something into my mouth, but if food needs cutting, someone else has to do that for me. I could probably butter my own piece of toast, but butter knives are pretty heavy actually, and so that’s becoming more and more difficult. If the butter is cold, forget it. My score here is a one.
|6. Dressing and hygiene|
|Independent and complete self-care with effort or decreased efficiency|
|Intermittent assistance or substitute methods|
|Needs attendant for self-care|
This category should probably be two, in my opinion. Dressing and hygiene are completely separate, particularly if you are a woman. As far as self dressing is concerned, men would probably score higher in this category than a woman of the same progression, simply because that dude never has to deal with bras. I could pull a shirt over my head and sweatpants on, but dressing more feminine requires so much more effort than that. We won’t even talk about shapewear. Anyway, I digress. Gender and/or biology disparities aside, hygiene is also a completely different ballpark. And yet it is one category. At this point for me, taking a shower by myself is impossible because I cannot operate the mechanism to get the showerhead to work. I have to have my mom come in and activate the shower. Once the water’s on I’m okay, but it’s extremely difficult and exhausting and I don’t feel fully clean at the end of it. I never get that freshly scrubbed feeling anymore. Toileting – and that is such a great word – is going okay in the wiping up and taking care of things department, but it’s becoming very difficult. I have to use a wand that holds toilet paper. I resisted it for a very long time simply because those devices are the punchline of jokes about morbidly obese people. I’m fat by medical directive, but I’m not morbidly obese and I am stupid self-conscious about it, and so I resisted buying a device that actually made my life easier for far too long. Yay society. So while I am able to take care of myself in this department, sometimes some help is greatly appreciated such as when zipping up boots and putting on socks. I usually rate myself as a three here, but if I’m being fully honest I’m a two.
|7. Turning in bed|
|Somewhat slow and clumsy, but no help needed|
|Can turn alone or adjust sheets, but with great difficulty|
|Can initiate, but not turn or adjust sheets alone|
See? Practicality. Pure and simple. This category represents something you don’t really think about until you start to have problems with it, and then it becomes dire. Turning in bed is no big deal until you spend literally all of your time in bed. I am so, so grateful I have an adjustable bed. My life would be so much harder without it by now. I’m not to the point yet where I’m completely helpless, I can still adjust my own blankets and adjust my body, but sleeping on my side is no longer possible. That’s more to do with breathing than physically turning in bed, and that comes later, but for now I don’t have to struggle so much to sit up in the morning because I push a button and I set up automatically. So for all intents and purposes, my score here is currently three. It’s teetering on two, but we’re not there just yet.
|Early ambulation difficulties|
|Walks with assistance|
|Non-ambulatory functional movement only|
|No purposeful leg movement|
This category is where my symptoms began. It is the most noticeable change in me. I can currently focus really hard and move my toes the slightest little bit, but with my heel on the ground I cannot lift my toes. I cannot turn my feet to left and right. I used to be able to wiggle my left little toe independently of the rest of my toes but that stupid party trick is now gone. With weight on them, my feet are now completely useless for balance. Even the weight of a blanket pressing down on my toes is too much, so I have a device on my bed that keeps the covers off of my feet. I described my legs as useless meat stilts, and that’s pretty much what they are. I can prop my body up on them and clumsily move one forward at a time to perpetrate some semblance of walking, so long as I have both hands on some sort of other assistive device. I can kick my legs up while sitting, but I can’t lift them parallel anymore. I can lift my knee just the slightest bit, but once the doctor puts any pressure on them they go right down. I’m currently able to use the walker to get to the bathroom, but any trip longer than that and I become winded and seriously worried that I’m going to fall. I’m technically able to walk still, but for all practical purposes I am in a wheelchair. My score here is a two, but in real life is much closer to a one.
|9. Climbing stairs|
|Mild unsteadiness or fatigue|
|Occurs when walking|
|Occurs with one or more of the following: eating, bathing, dressing (ADL)|
|Occurs at rest, difficulty breathing when either sitting or lying|
|Significant difficulty, considering using mechanical respiratory support|
This is a very fancy word that means shortness of breath, specifically when exerting yourself. What makes you winded. Luckily my breathing is not so terrible yet that I struggle for air just sitting around, but I know that day is coming. Just not yet. I do get winded at the stupidest little things, and it is frustrating. Getting dressed for example. I break out in a sweat and breathe a little harder when I have to get dressed in people clothes. A walker trip to the bathroom leaves me very sweaty and breathless. Taking a shower involves frequent breaks to catch my breath. Talking for long stretches of time can leave me breathless. I claimed three here probably longer than I should have if I was being honest. For now I’m holding steady at a two.
|Some difficulty sleeping at night due to shortness of breath. Does not routinely use more than two pillows|
|Needs extra pillow in order to sleep (more than two)|
|Can only sleep sitting up|
|Unable to sleep|
Another fancy word for shortness of breath, but this one pertains to breathing while lying down. I don’t use more than two pillows, but my bed tilts so that’s cheating. I can no longer sleep lying completely flat, because it’s hard to breathe. Not impossible, but difficult. My score here is a two.
|12. Respiratory |
|Intermittent use of BiPAP|
|Continuous use of BiPAP|
|Continuous use of BiPAP during the night and day|
|Invasive mechanical ventilation by intubation or tracheostomy|
When I was first assigned a BiPAP machine, I didn’t really need it. I had no breathing problems at all, and just enough sleep apnea to barely register. I was prescribed this machine more because eventually I was going to need it and I should get used to it sooner rather than later. That machine died, so now I’m using an AVAP machine – which is the strongest noninvasive ventilator there is. Not because I need that strength yet, but because I will. I can definitely sleep without it, but it’s beginning to get to a point where I like to have it. My breathing is still above 50%, but only just. My score here is a three. I fear this category the most, because this is what’s going to kill me.
So unless I’ve done the math wrong, my score is still 29. It’s a good thing, when the score stays steady.
So that ALS-FRS scale. It’s not perfect obviously. There are symptoms besides these that come up; my incontinence for example. There’s not a damn thing about that on the scale. There is nothing about muscle cramps or twitching. It only covers the major symptoms that happen to the most people with ALS. It is not a complete picture of living with ALS, but it is a very good numerical representation of how well someone is surviving – not necessarily living – with ALS. It is a standard against which to measure, a way to measure decline, a common language. It is a very useful start.
And hopefully this post was useful to you.
Oh man, so the medical trial ate my life for awhile there – I was going for 3 or 4 days every two weeks and that was kiiiiiiiinda my job and existence for a bit. With all the attending fuckery, of course.
In the meantime, I was officially and finally terminated by Intel. I have applied for SSDI and not received it yet, though I’m not anticipating any troubles there. The agent I’ve been working with has been using the phrase “WHEN you’re approved” rather than IF. ALS is kinda a shoo-in. I’m not 100% confident that there won’t be something to go wrong, this is a government thing AND a medical thing soooooooo the situation is RIPE for angst and bureaucracy to do its thang.
I lost my health insurance through Intel as of the 30th of September. I don’t have Medicare through SSDI yet, so I am in Happy Funtime COBRA Land. I’m paying $750 a month to continue my coverage.
Orrrrrrrrrrr……I will be.
I signed up for it right away. And then I got a call on Tuesday the 1st about some parts I’ve ordered for the SS Opportunity, like longer armrests. They tried to bill my insurance and Providence says I’m not covered. I panic a little but not too much; I only just signed up for it after all and maybe it takes a couple days?
Wednesday, they delivered my $17,000 box of infusion meds. Thursday, the nurse came to my home to access the port. Friday, the wheelchair peeps called because my insurance was STILL not active. I start to panic a bit more. Saturday I had the home health nurse come out to swap my catheter. Monday I got a phone call from the infusion pharmacy because guess what? My insurance is invalid! So I called Intel’s HR in a complete panic and learned:
In the meantime I have two options:
“I will gladly pay you in 3 weeks for a doctor today.”
I just….seriously. This is what I have. This is how it works. I hate the American (lack of) healthcare system SO MUCH. I should not be running interference between my insurance company and my medical providers. I should not be spending hours on the phone. I should not be worried about the financial aspects of dying, I should be allowed to just be DYING. I should be spending my time in bed watching Carl Sagan explain the cosmos to me while eating gummy sharks and finding cute Halloween pictures on the internet while my cats sleep at my feet, surrounded by a dozen blankets.
Dying should not require a fucking secretary.