I Feel

In the early days of my disease, when encountering difficult things, or when someone would give me sympathy, I would say, “oh it hasn’t BEGUN to get hard.” For years. It wasn’t to be a doomsday preacher or anything, just acknowledgement of a fact. It was going to be harder someday, so I should both appreciate the good stuff while I had it and be prepared for when they did.

Things are officially Hard.

Several phrases describe me now that both hurt to hear and seem so surreal. “Late-stage ALS.” “Effectively paralyzed from the neck down.” Statement of fact. I don’t think that I get to have another birthday. True things. I am, technically, on a ventilator – while I CAN breathe without the AVAP, I choose to use it because it SO. MUCH. EASIER. But it all leads to I am capital D Dying.

Only.

Only I don’t FEEL like I’m Dying. Or even dying. I expected to be in a constant state of misery, when it got this far. I’m not. My body doesn’t work but nothing hurts. I feel FINE, it’s literally just that I can’t BREATHE. There is no deathbed, it’s just my tempurpedic.

My disease doesn’t feel awful, it just manifests as a thousand inconveniences. I would have posted months ago, but I was waiting to get my speech-to-text software running. Now that it’s installed and troubleshot and running, I find that it won’t work for me because my voice is too soft and the AVAP bakes be sound like I hab a code. It’s not the end of the world, it just means I must use the onscreen keyboard and type things out. Inconvenient. I can control my laptop using my eyes, but I can’t install anything because Windows’ little “are you SURE you want to allow this software to make changes “ prompt disables the eye gaze software so I can’t click Allow. Frustrating. But not a crisis.

Some day sooner than I would like, the ventilator won’t be strong enough. I’ll take the self checkout, because like HELL am I getting a ventilator surgically installed (you can fuck off with that ok thx bye. It is a viable option for a lot of people, but I absolutely do not want it). But that day will come, because I don’t fancy suffocating. And on that day, chances are I’ll feel fine except for breathing.

When I die, I’ll say goodbye, I promise. Until that day, expect more fuckery.

The Sitch

Hello, my name is Vashti, and welcome to this old body. Bob Villa couldn’t make it today.

I figured it’s time for a check-in. Even local friends don’t know exactly how far my symptoms have progressed, what I can and can’t do, so let me show you around. We’ll do this from the bottom up.

Feet – useless. I can’t move them all. I still have full and complete sensation in them, they just don’t move when I asked them to.

Legs – some movements, no walking. I can shift my legs around a little bit, raise my knees just a little bit, and that’s it. Boom. I made you a poem. My knees have become stiff with lack of use, so it was getting to be excruciating what I had to bend my legs to be in the sling or whatever. I now sit with a blanket curled up behind my knees to prevent this.

Bathing suit area – OMG potty talk ahead LOL LOL LOL – I pee exclusively through a suprapubic catheter. It is a surgical tube installed straight into my bladder about halfway between my groin and enable. It is a single best surgical decision I have ever made. I get UTIs a lot, which sucks very much considering one of them wound me up in the hospital earlier this year. Pooping is hard, because the muscles I used to bear down are starting to wither away. So it’s a weird kind of constipation. I’m not sure what we’re going to do about that when it gets worse, laxatives are not really an option because I’m not going to be able to make it to the toilet quickly when they kick in. So that’s fun.

Guts – I have a feeding tube installed, but we haven’t started using it yet. We flush it daily with water to keep it open and clear. I can still eat food so it remains installed but auxiliary.

Arms – mostly useless. I cannot raise my hands to my face. I need things to be in both hands if I am to use them, if something is out of immediate reach, it is off in space for all it matters to me. I have had to surrender control of the bed for this reason. I need someone else to raise and lower the head. I need someone else to dress me these days, I can’t really participate in anymore. I am an unwieldy doll.

Hands – mostly useless. My range of motion is extremely limited. Mostly it’s just my thumbs can move a little bit. My cell phone is in my hands, I can swipe up and down but I can’t reach the other side of the screen. Using a cell phone is very hard these days. This entry is being brought to you by eye gaze technology and speech to text software! Hooray for technology!

Lungs – getting pretty bad. My lung capacity is now around 23%, actually probably lower than that because I haven’t had it tested in a few months. Breathing is officially getting hard. For the most part I still only use the AVAP when I’m sleeping. There are days though, there were three of them so far, which went where my breathing was so shitty that I wore it all day. This will be what kills me. There is no way in hell I am having a ventilator, so when my breathing gets too bad then that will be it. Hopefully they can make me comfortable.

Speech and swallowing – I can still do both of these things. My speech is unaffected except by my breathing, which makes my voice high and reed sometimes. I’m beginning to have problems swallowing. It might take me a gulp or two to get something down. Don’t have problems with things going down the wrong pipe very often, which is great because I can’t draw and breath strong enough to get it out when it happens. I wind up having to make these horrible horrible noises trying to draw in breath. It’s pretty damn scary for everyone involved. I’m afraid that’s how I will go out – choking on something. I’m very careful and diligent when drinking and eating so I think I’ll be okay.

Brain – the brain meats are doing their job but often with protests. I get a lot of panic attacks these days, mostly related to my breathing. I find myself a little out of breath, which triggers panic, which makes me unable to breathe, which makes me panic about not being able to breathe, and it’s just a vicious cycle. Praise God for Ativan is all I’m saying. I’m mostly coping. Things are getting more real, I’m definitely in planning stages for what will happen to all of my shit when I’m dead. I have a lot of stuff. I am trying to make my death as easy on people as possible. It’s a bureaucratic nightmare, so I’m doing what I can to alleviate that.

This concludes our tour. Please return your seats to their full upright position and make sure your table trays are locked and stowed. Moral of the story here, I guess, is that things aren’t exactly great but they could be so so much worse. I still have a sense of humor about it, and as long as I can find it funny, I’ll be okay. Thanks for coming along for the ride. Wait, I was doing a This Old House Parody. Okay well wear your safety goggles and check your measurements twice. Join us next week. We’ll be making mountains out of mole hills.

Record Scratch

The most intense, personal, physical feeling is not an orgasm.

It is someone scratching an itch you had for hours.

I knew this would be a problem – it’s actually one of the few things that I did realize was going to be a problem. The itching. It’s very frustrating to have a itch that you can’t scratch, and not even being able to wiggle to get some relief is torturous. I’ve actually gotten panic attacks from itching – being so helpless with such physical intensity, knowing you can do absolutely nothing about it.

This is where other people come in. I will regularly ask Jay for scritchies, and sometimes the relief is so intense my eyes roll in the back of my head. Now that it’s winter, of course my skin is drying out, so more scratchings. He’s a saint to put up with it, and to cater to me so well. It’s an intimacy, someone else scratching an itch. And I am here for it. Hallelujah.

I Lived!

I did not die on the operating table.

I also did not have chlorhexadine used on me.

I DID, however, have an allergic reaction to – I’m assuming – the antibiotics they put me on before the surgery because I had a UTI. I was a little bit itchy on my arms before the surgery, but afterwards it was a full-blown rash down my sides that became a traveling nightmare of itch. So unfortunately, I was not spared the itching this time either. But it was not at the negligence of the hospital crew! Progress!

They attempted to do the surgery laparoscopically, but couldn’t manage it for whatever reason. So they wound up having to do open surgery. I now sport two puncture marks and a 3 inch incision. The healing has gone okay, I’m having some minor issues with the bumper on the outside of the two digging into my skin because I may be too fat for the tube that they used. I’m waiting on the doctor to call me back to discuss that further. The pain was not as bad as I honestly expected. I haven’t had to take the opioids nearly as often as I would have figured. Tylenol and Advil have been taking care of it just fine, usually. It’s typically not so much painful as uncomfortable – like a bloated sort of “I’ve had too much to eat” kind of feeling rather than a specific sharp” I’ve had surgery” pain.

My nightmare scenario of being unable to get out of bed to use the toilet never materialized. By the time I needed to do the thing, I was able to shift myself. I’m pretty much back to where I was, except that twisting to reach things is harder. Or currently impossible. I’m sleeping with the AVAPS machine on my bed instead of in its little cubby because I cannot reach over to turn it on and off. Scootching myself in and out of bed is far more laborious at the moment, but it is not impossible. Just time consuming.

The tube is just a future proofing for now, I’m not using it at all. Every day though, we need to flush it with water to keep it happy. It is a very strange sensation to have suddenly drunk 60 ML’s of water without having swallowed it. Hopefully I don’t need to actually use the tube for quite some time. I am having no troubles chewing and swallowing, the only trouble I have eating at the moment is physically getting the food into my mouth, because my hands suck. Otherwise everything is grand.

Hopefully this is the last surgery I have to have, unless I decide to install a ventilator. Hopefully that’s some distance down the road. For now I have two tubes sticking out of my torso, and I am now a series of tubes. Like the Internet. It’s one more concession to the disease, but I’m not really having any big feelings about it. I had big feelings about the idea when it was first presented to me, and I had some big feelings when the actual surgery was scheduled. The first time. But now I think it’s been such an ordeal I’m just glad to have it done. Now I just need to have it heal and it will be another part of me and that’s all there is to that.

I could have done without the itching though.

Fed Up


It’s finally happening. I’m getting a feeding tube placed. My surgery is slated for November 24th, the day before Thanksgiving. 


I don’t NEED it yet, not even remotely. My ability to swallow has not been hindered by my disease at all. I’m still able to eat perfectly. My breathing, however, is becoming enough of an issue that this surgery needs to move forward. Any time you go under anesthesia, there’s risks. But with my breathing numbers being what they are, the risk is far greater for me, and they are getting worse the lower my lung capacity gets. We need to get ahead of the surgery before it becomes completely impossible to perform. That’s why we’re doing this now.


Just because I’m getting it now doesn’t mean I have to use it. I’ll still be able to eat normally. Some basic maintenance will have to be performed daily, just flushing the tube with water and maybe changing some gauze daily. Eventually when eating becomes a chore, I can eat what I feel like eating and then just use the tube to supplement the nutrition I’m not getting because it’s too burdensome to eat. And then of course when I’m not able to eat at all, it will be my main source of calories. But I feel like that’s a long way off. My arms are going to quit before my jaws do. I’m going to have to have someone spoon feed me, before I have to use the feeding tube, but I think I’m going to be eating for a long time still. The installation of the feeding tube is literally just because I won’t be able to survive the anesthesia with my breathing being what it is for much longer.


We had the consultation last Friday, to answer any questions that I might have and to go over what the procedure is and nail down any details. I didn’t have a lot of questions, because I am a compulsive researcher and had already looked up a lot of it. I was told they were going to keep me overnight – THAT was a surprise. All of my research had indicated that this was a simple outpatient surgery. But no, my clinic typically keeps patients overnight for observation, so this will be my very first overnight stay in a hospital! I’m not sure how I feel about that, some combination of nervous about the procedure as a whole plus annoyed about not being allowed to sleep in my own bed plus excited for a new experience. I know damn well I’m not going to be able to actually sleep that night; no one ever sleeps in a hospital. I was kind of hoping to come home after the surgery and climb into my own bed while I was still kind of doped up on painkillers.


I’m not nervous about the surgery itself at all. It’s a super basic surgery, very little can go wrong, and the recovery rates are very quick. People in my support group have said that it’s not difficult at all except for the first day. The main thing I’m worried about is being able to transfer in and out of bed with a stomach wound. I basically have to use my arms and drag myself across the bed to get in and out to use the bathroom, and it’s a HUGE effort. If I’m absolutely unable to do so though, we have a Hoyer lift, and we’ve practiced using it. We’re not exactly smooth practiced professionals with it, but I think we can get the job done. I’m also incredibly pain tolerant, so the concern isn’t really that it’s going to hurt too badly to move, more that I will be physically unable to do so. I guess we will see how that goes.


The clinic called to make the appointment on Monday, and the first appointment they had was for Wednesday November 24th, the day before Thanksgiving. The date actually worked out very well for a lot of reasons, primarily because Jay has that week off work. He takes so much time off of work to take care of me I really didn’t want him to have to take more days off on my behalf. We don’t really celebrate Thanksgiving because it’s a colonizer holiday, but we do like to eat so we typically just overeat and call it good. We won’t be able to do that on Thanksgiving this year because I’ll be waking up in the hospital with a gut wound, but we can make up for that at any time really. We will have a make up Thanksgiving dinner. Maybe even two. No one can stop me. MWUAHAHAHA


I’ve been sitting with the idea that a feeding tube was coming for over a year now, and the idea gained more solidity earlier this year when my pulmonologist basically said no. Really. You’re going to have to do this and soon. The clinic before last, I made up my mind to bring it up the next time I spoke to him, and next Clinic I was ready to make the appointment, but then my pulmonologist retired and I had a new one who wasn’t quite as gung-ho about it. I thought about it and contacted him after Clinic was over though, and asked him to set it up anyway. I’d like this over with. While I still have my contributions to my out-of-pocket maximum paid, before all that refreshes, and just so I can be done with it. I’m not in a hurry to get it done, not at all, but it’s this big deal that’s been hanging over my head for months and months.


This post is going to serve as my announcement to my friends that I’m getting this surgery the week after next. I purposely allowed myself a week to sit with the knowledge that I had the appointment and everything was said and I was ready to go. I wanted to let feelings settle in, before I was ready to answer questions and ready to talk about it. I’m doing surprisingly okay. I kind of figured it would be a much bigger deal? And maybe it will be once the surgery is done. I know I will be a bundle of nerves the actual day of surgery of course. But the significance of this surgery has not devastated me like I kind of expected it might. This is kind of it. From here, the next surgery is going to be the installation of a ventilator if I decide to have that. And I don’t think I will, at the moment, but that’s a problem for future me to work out. But this is the next big big step, the next big concession to my disease. I’m getting a feeding tube placed because I’m not going to be able to eat food like a normal human being. I’m going to have to eat blended food and give up one of the things that I enjoy very most in life. I love to eat. The main thing I’ve missed during this whole pandemic is eating in restaurants. And while getting the surgery right now doesn’t mean I HAVE to use the feeding tube, it’s an indicator that I’m GOING to, someday. Unless of course, my breathing is so shitty that it kills me first, which isn’t exactly a happier thought.


For now though, I’m handling it just fine. I’m a little nervous about the surgery itself, because I’m always nervous about surgeries, because there’s always a risk associated anytime you go under. But that’s not a big Cosmic worry, that’s just common sense worry. I’ve had ample time to mentally prepare for this. I have plans in place. We have prepared for the worst case scenario of me not being able to transfer in and out of bed. I’m doing okay. This is going to be just fine.


I can’t wait to share all the gross details with you once I’ve had it done.

Fuck you, it’s funny.

“Should I throw these out,” J asks me, indicating a pile of adult diapers beside the toilet. They have tabs to close them on the sides rather than being the step in brief kind I usually wear. I’m not able to stand and pull up briefs on my own anymore, so I bought these to try out, in a bid to hold on to my autonomy. It was a massive failure; I’m not able to get them under my ass properly, never mind operating the Velcro-like tabs with my failing hands.

“No, keep them,” I tell him. “Once I’m not able to get out of bed at all we’ll want them. You’ll need to undo the diaper, get me in the sling, lift me up, get the diaper off me, get me to the commode or whatever to do my biz and them lay out a fresh diaper. We’ll need the tabbed diapers.”

“I thought we said we didn’t want kids,” J tells me.

We laugh our asses off.

*************

The clip on my catheter bag has somehow come undone and there is a pool of pee next to the bed. I’m mortified, of course, and feel terribly about J having to clean it up.

“Someday I’ll be dead,” I tell him brightly, smiling like a television ad, “and you’ll never have to clean up my bodily fluids again!”

He eyes daggers at me while I laugh, like, “what the fuck is wrong with you.”

*************

Some days, the gallows are hilarious.

Helpless

I’ve been away. Obviously. I have a good excuse – my mom died. Twice, actually.

…It’s ok – she’s back with us. We’re all still getting used to everything that this entails. A new normal for everyone involved, new limits, new routines, new paranoia, new hospital bills. New PTSD for both of us.

It was 4am on a Sunday morning when she came into my room, eyes wide and her voice high pitched with panic: “I can’t breathe” between frantic gasps. I whipped off my AVAPS mask and pushed it into her hands, and she tried desperately to use it to breathe. I called 911, screaming for J, at the other end of the house and on the other side of a closed door. 

He never heard me. 

My mother collapsed into my wheelchair while I breathlessly gave the operator my address. Could I get her on to the floor, he wanted to know. Mentally screaming in panic, I would have given ANYTHING to be able to perform CPR on my mother. I explained I couldn’t and why. I watched my mother’s eyes roll back. She stopped attempts at breathing and slumped over.

She’sdeadshe’sdeadohfuckshe’sdeadshejustfuckingDIEDjesusfuck

I told the operator she’d lost consciousness, optimistically. The operator asked again could I get her on the floor. I saw flashing lights outside. I couldn’t yell loud enough to get J to come unlock the door to let the paramedics in. 

I was absolutely, totally Helpless. 

I couldn’t do CPR. I couldn’t get her in recovery position. I couldn’t yell loud enough for help. I couldn’t unlock the door for the paramedics. I could do nothing. 

J was awakened by the paramedics pounding on the door. They came in, hauled her on to the floor and started CPR. I was a helpless audience, trapped in my bed while a room full of people in uniform brutalized my mother’s body. CPR is a harsh, ugly thing to witness – I already knew this, but I was unable to look away. I heard the word “asystole”, which my brain knew meant dead. My mother was dead. I was right. I’d watched her die. They continued to push. They wanted more room. They moved her to the kitchen. All I could do was sit in my bed and hear them work some more. I heard “got a pulse”.  I heard “let’s move her”. A police officer came in and said they were talking her to Saint Vincent’s. 

J was finally allowed to come to me; the emergency crew had blocked him from my half of the house. He helped me get dressed while I told him what happened, still wide-eyed with shock.  We drove to the hospital. And waited. I signed a DNR, in case she crashed again. We’d talked before about it, and she’d said she wanted to be let go. I wondered if I’d fucked up already. I wondered if she would wake up.  I called my brothers.  I finally let myself cry.   I felt scared and completely helpless. 

Mom spent ten days in the ICU.

We found out later she’d flatlined again en route. We were very, very lucky to haver her still with us, but it was perfectly clear that it was a very fragile hold on life. Every minute was by chance. I visited her as often as I could. Thanks to COVID, there were some really fucked up visitation rules which meant only my older brother and I could visit. At All. Not per visit, not per day, at all. She could die any day and my younger brother an his wife weren’t allowed to see her. Her prognosis changed by the hour, and the doctors made it seem like any minute my brothers and I were going to be called upon to decide to pull the plug on her or not. 

….Which was pretty fucked up, because she was conscious sometimes, just sedated as fuck. Day three she regained consciousness but couldn’t communicate because of the tubes and the drugs, and we weren’t sure how much brain damage there was from being dead for a bit. So even as they’re asking us whether or not to consider a lifelong ventilator our a graceful exit, we’re like, shit, dudes, she’s RIGHT THERE. Maybe lay off the sleepy juice for a bit and see if she can tell us what she thinks?  She was conscious yesterday, why didn’t you ask her?

For most of her ICU stay, she was intubated, so she couldn’t communicate well. Just vague gestures towards her feet when they were cold. Weak motions at her face because she wanted the tube adjusted.  And when she finally could communicate, she usually asked for simple things. Her eyelids were sticky. Her lips were dry. Her feet were dangling off the side of the bed; could they be lifted back into place please. 

Things that an able bodied visitor would have been able to take care if in a jiffy, but things I had to call a nurse in for every. Fucking. Time.  I felt useless. I couldn’t get my mother a sip of fucking water. I could fix her eye crusties in two seconds with a damp washcloth if only my fucking hands worked. 

Meanwhile at home, I was left alone for the first time in years while J went to work. We were both nervous about it. The silence in the house was deafening. Mom is a quiet roommate, but I can still tell she’s around. I had to be extra careful to have my smart watch or my phone on me at all times in case something happened, so I could call J. We had to figure out lunches for me that didn’t require heating or prep that I could have in my mini fridge, since no one would be around to get me food. I ate a lot of lunchables. 

I realized that I couldn’t make myself a sandwich now if I wanted to. I’m helpless to feed myself without prep. 

Mom recovered enough to spare me the decision to kill her or not; in fact, got the vent removed, moved to a biPAP machine, and then to a regular nasal cannula and was moved to a regular hospital room in one day. I brought her a celebratory Pepsi, which I had to ask a nurse to pop for her. She didn’t remember anything, thanks to the sedation drugs.

After a week in the hospital, she had to do three weeks’ time in a nursing facility to recover.  She wasn’t even strong enough to hold her cellphone when she was admitted. She quickly built up her strength, though, like, SUPER quickly, and though she’s not quite 100% back to where she was, she’s something closer.  I was deathly afraid of her checking in and not checking out of that place, but she worked hard and busted out of the joint.

She, of course, is worried about taking care of me. She’s not back to her former caretaker duties and she may not ever be again; any time she comes in to talk to me about something, she has to sit in my wheelchair and catch her breath from coming in.  Once she worked up the nerve to sit in my wheelchair again, that is; that took some working up to. I told you: PTSD. We’re not back to how things were but she’s home.

I’d give anything to be able to keep up the house and cook her healthy meals and cater to her so she can just concentrate in healing. She’s fucking DIED. TWICE. I want to give her the luxury of time to repair. 

But I can’t. I’m helpless. 

Helpless in my own behalf sucks and I hate it. Having to rely on others to do things for me blows. 

But this helpless on behalf of others bullshit? It can fuck right off. I just want the strength to make my mom an egg sandwich. Or do her laundry. I just want to help her. Whether it’s fetching a drink or sweeping her floor.

Being this useless blows goats.

Seven

I’ve been Officially Sick for seven years now. Two years longer than the outside average life expectancy, and still doing really well, all things properly considered.  Yet, for some reason, this year’s Saddiversary was really, really hard.

Like. Really fucking hard. 

A solid week leading up to the actual date saw me in a total despondent state. True and proper depressive episode, sleeping and crying a lot, medicating the living shit out of myself, unable to find joy in anything, looking desperately to climb out and get just a little happy again.  The tiniest bit. Anything. Please.

I imagined myself in a room. Depression Land. It’s very much like my actual room, only greatly exaggerated. The bed takes up most of it, and has shackles. I spend over 80 percent of my time in this bed.  This last week I had to ask J to help me medicate the skin on my ass where it is threatening to become bedsores.  Bedsores caused by sedentary lifestyle fed by depression and then feeding back into it. The bed is my world. There’s a bright spot here, a pulsing lifeline that is my laptop, my connection and my distraction and my salvation. It’s a dim light, during these episodes, the barest of dim glows, but it’s still there. There’s a bed caddy with the remote controls for my tv and my bed, my phone, and my drink. (Holy shit am I going to miss drinking soda. I will hold on to the ritual of my morning Monster energy drink for as long as I can. SODA IS AWESOME OKAY) In Depression Land, it tastes like nothing. There’s piles of blankets here but they don’t keep me warm. They entangle, instead, and stifle.

There’s a pile of luggage in the corner. It’s a matching set, poison green with little corona viruses all over them. They smell like dust and bitterness, and they represent all the things I missed out on because of the corona virus. One whole year of my extremely limited life, with my rapidly diminishing ability, gone to this fucking virus. There are twin suitcases here labeled “Portland Dining Month”.  One nice sized one labeled ‘Saddiversary celebration in San Francisco with J’. One labeled ‘birthday 2020’. Six or seven labeled with various concerts and show names. There’s also a pile of cardboard boxes, hastily marked with Sharpie, “Help moving”.  That one smells especially bitter.

The bitter aroma also extends to my wheelchair, relegated to a role as bathroom taxi and doctor appointment shuttle. In Depression Land, the SS Opportunity is covered in mildew and cobwebs. It never gets to go anywhere fun.  She’s not my freedom, here; there’s nowhere to go. In Depression Land, this glorious machine is nothing but a tool, and a laborious one at that.

My closet, too, is mildewed. All my cute clothes relegated to the darkeness because WHAT EVEN IS THE POINT.

Books, turning to dust, snacks, tasting like ashes. 

I fucking hate Depression Land.

The only good thing about it is, I know my stay is temporary. Even if it doesn’t feel like it. I’m usually able to remind myself of that, when I’m desperately scrolling through Amazon looking for some stupid little tchochke that will make me happy for five minutes or trawling the depths of TikTok to find something, ANYTHING..

Eventually, I remember. 

Or in this case, eventually, the day comes and goes. 

The ALS Association: A Love Letter

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

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

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

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

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

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

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

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

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

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

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

NADA.

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

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

CBDon’t

Let’s talk about drugs, baby
Let’s talk about THC
Let’s talk about all the good thing and the bad
About C-B-D!

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.

Washed Up

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

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

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

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

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

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

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

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

TWD: Traveling While Disabled

I’ve been flying a lot lately to San Francisco for a medical trial. Most people, when I tell them that, inherently all understand that traveling is a bit difficult when you’re in a wheelchair – but I don’t think they quite understand exactly how complicated it is. And there’s no way for you to know unless I tell you. So! here’s what it’s like to fly when you’re in a power chair! (standard disclaimer, this is what it’s like for ME, your mileage may vary, put on your own oxygen mask before assisting others.)

I’m very lucky in that this study is paying for all of my travel. Luckily I don’t have to do with the expense – I’m not PAYING to go through all this nonsense. I’m also extremely fortunate that my local chapter of the ALS Association is loaning me a power chair specifically for travel. The airline has managed to damage two wheelchairs so far. The manual chair I was using had one of its brakes completely bent to un-usability, and the power chair had a knob completely sheared off that controls the headrest position. Fortunately in both cases the airline resolved the problem and everything was very cool in the end (they bought a new manual chair, and sent out a tech to my home to fix the headrest). It sucks to have to deal with, but I seriously thank the ALS Association for the loaners, thus preventing the damage happening to my own personal chair. If the S.S. Opportunity got broken, I’d lose my mind.

So! On to the airport!

Phase 1 – Security

The two airports I have to deal with, and I imagine every other airport, have a priority lane for people with disabilities. It’s like the ONE saving grace in all this nonsense. It’s usually my brother going with me, so he and I go through the short lane together. Shorter waits to get to the long wait at the luggage scanners. In the San Francisco airport, the priority lane is marked off with ropes on bases that are inevitably placed too closely together, making the lane much too narrow, so Gecko has to adjust them or I run them over. We show our IDs and boarding passes and get in line for security. My brother is a pro at getting all of our stuff on the belts by now. I don’t bother taking my boots off anymore, but I do have to surrender my shark purse and my hoodie and all that fun stuff. We let the security screener know that I’m going to need someone to check me through, as I’m not able to get out of the chair. The security screener shouts FEMALE ASSIST!! the first of several times. Usually, they point out that I have forgotten the bag hanging on the side of my chair and will need to put it on the belt, please. I politely explain that it is a catheter bag and thus attached to me so I will be unable to do so. Occasionally they take this news very gracefully, but usually they get flustered and mumble an apology and bark FEMALE ASSIST!! another time to change the subject.

Gecko stays with our stuff as it goes through, and I wait on the side for my FEMALE ASSIST!! to show up. There’s no good place to park a wheelchair in a security lane, so I’m often just kinda…there, while other people mill around, unsure if I’m in line. I’d like to live in their reality, where it’s possible for a power chair to fit through a body scanner. When a FEMALE ASSIST! eventually shows up, often she will point out that I have neglected the bag on the side of the wheelchair, I again explain that it is catheter bag and thus attached to me, and I’d be delighted to put it through if I could. And for some reason the FEMALE ASSIST!! are usually much more graceful about this information. Sometimes an apology, usually just an oh okay, and we get on with our lives. Life lesson: women seem generally much cooler about pee bags, in general. I’m led to the back, where everyone else is putting their shoes back on and getting their stuff together, and brought to a little table with a chemical sniffer on it. From here, the officer goes into robot mode. She is very obviously going through a mental checklist and script. She asks if I am comfortable being screened here, or would I like a more private area. Usually – usually! – what’s to come is not too terribly exposing, so I always opt to go ahead and do the scan where we are. She explains very carefully everything that she is about to do, where she is going to touch me and how she is going to do so. Up and down the arms, along the back, between and under my breasts with the backs of her hands, etc. I’m asked if I can stand up at all, and when I say I cannot, I am asked if I can at least lean to the side for her to get her hands under my buttocks. They always use the exact word, buttocks. It amuses me. I say I can at least lean for her the best I can and she satisfied with that. She then proceeds to do exactly what she said, in varying degrees of thoroughness. They always do exactly what they state they will do, but the intensity of the search varies from agent to agent. In one instance, I had an agent go so far as to pull my shirt up and stick her hands in the waistband of my skirt all the way around, exposing my belly to the whole security area, but typically it’s a perfunctory exam. She feels up my arms, my legs all the way to the crotch, under my buttocks (teehee), pats my head because I’m wearing a handkerchief, and then tests her hands for chemical traces. Sometimes she asks if I can remove my boots, and I tell her she’s welcome to do so but I cannot assist with that – usually that gets a nevermind, but once or twice they’ve taken my boots off anyway and put them through the scanner. They never help me put them back on. She then tests my chair by pressing on all of the padding in the back, seat, the arms, she does a visual inspection of everything to look for any obvious explosive devices, and then tests her hands again. The last thing they do is test the catheter bag. Often they’re content with me just squishing the bag around to prove it’s not anything rigid inside, sometimes they want to visually inspect inside the bag, and one time she made me take the urine bag out of the backpack. ATTENTION PDX: THIS IS WHAT A BAG OF URINE LOOKS LIKE. That was awesome. Then they swab my hands for chemical traces one more time, and when it declares me safe, I am free to go.

I find Gecko and he helps me put my boots and my sweatshirt back on, we load the luggage back up on the chair because I play pack mule on these trips, and we go to find our gate.

Phase 2 – Boarding

The way our schedules usually go, we have a bit of time before the gate agents are even available, so we have a moment to grab something to eat. When the gate agent shows up, Gecko goes to the counter and gives them The Schpiel. He lets them know that I am traveling in a wheelchair, that I will need assistance boarding the plane, and as a courtesy if they would like to allow whoever is in the window seat in our row to board with us so that they do not have to climb over me, that would be great. That last request was a hard earned lesson of awkwardness. Once I’m seated, I can only sort of swivel to the side to allow people in and out of the row, so whoever is stuck in the window seat has to climb over me like a human jungle gym. We have asked for premium seating from our travel agents and they’re usually pretty good about getting it to us – not because we want the free snack, but because there’s usually a little more legroom to allow the stranger sitting beside us to climb over me a bit easier. A bit less invasively. There’s paperwork to fill out for the chair, the details of which he lists by rote. The chair weighs 385 pounds. It is a gel type non spillable battery. The brake levers are located on the front lights, which he will be happy to demonstrate to the ramp crew. They mark all of this on a bright orange tag which is rubberbanded to my chair. Another tag for gate check is attached, and we are given the other half as a claim ticket. And then we wait.

About half an hour to actual boarding, we begin the circus. Hopefully, our aislemate is allowed to go on ahead. Ideally, the passenger assistance people have been alerted and there are two strapping people waiting for me. Often however, it’s a small Asian man, or 100 pound just out of high school girl, or a 5 foot nothing woman, or a man with back problems. And often just one of them. We patiently explain that I am not able to stand or walk on my own at all, and so I will require a dead lift into the aisle seat. Usually they are smart and request backup. Sometimes the tiny people stubbornly insist that they’ll be able to handle it. I explain that I am 240 pounds of dead weight, it’s not a matter of strength alone but also sheer physics, but if they think they can do it I’m game to try. This is me, being polite and stupid. I wheel to the end of the walkway just outside of the plane, where the aisle chair is waiting. The aisle chair is a tiny little wheel seat with straps on it. There is the inevitable discussion of logistics, and I explain that coming from the left side of me is the best way so we don’t have to work over the control panel for the motor chair. Sometimes, they try to take the catheter bag away from me to make it easier, and they usually recoil like they’ve been burned when I tell them it’s a catheter bag. The guys, mostly. Again, women generally seem cooler with pee bags. Hilarity. We move the arm of my chair and the aisle chair out of the way, and then there is the actual lift with mixed success. Because again, physics. It’s hard to do even if you’re very strong, it’s just an awkward carry. Sometimes they nail it. A few times I’ve gotten to very capable individuals who lifted me with no problem and got me in the chair with no sweat. A few. More often they find out the hard way that I’m not kidding that 240 pounds is a lot, and sometimes it takes more than one “123 lift” attempts. There is a very specific way to lift a person that they are obviously trained in, which makes the process easier on everyone, that involves them coming up under my arms and grasping my forearms while I cross my arms across my chest – but sometimes they’ll just grab on to me and just sort of haul for all they’re worth. They’ve left bruises on my arms before from this. I never complain, I’m just grateful as hell to have someone who can help me transfer. This process always knocks the wind out of me, and they’re on a very tight schedule so I’m not allowed time to recover before they start strapping me into the chair. Again, I’m a big girl now, so the straps they place across my chest usually just barely fit. If I’m having a particularly bad air day, they’re slightly suffocating. Once we have all the straps across my chest and across my legs, I tell them they’re going to have to physically lift my feet and put them on the bar, otherwise my feet will be dragging the entire way. They do so, sometimes half-ass and my feet fall and drag. So we have to pause and pick my feet up and try again.

I’m turned around in the chair and pulled into the plane backwards. Once we get me maneuvered to the aisle, the real fun starts. My ass is exactly as wide as the aisle is, so I hit the armrests on both sides every single time. The very first row is usually especially tight, so I crossed my arms over my chest and tell them they’re just gonna have to push. They do. Sometimes for extra fun the belts I’m strapped with will get caught on the arm rests as we pass. Once at our seats, the assistants busy themselves unstrapping me and then we do the haul. If we are lucky, the armrests in my plane seat raise out of the way. They don’t always, and an “up and over” lift sucks exponentially for everyone involved. If I am extra lucky, the assistants remember to raise the arm of the aisle chair before they try to haul me out of it into my seat. Often they don’t. “What are we caught on?” “MY RIBS” – which is honestly my bad as well, because I should know better than to assume they’ll remember. And it’s digging into my side so you would think I’d be aware of it. But maybe a third of the time we forget, so that hurts. One way or another we finally heave my ass into my plane seat, while my rock star brother deals with all of the carry-on luggage getting stowed and I try to catch my breath. Ideally whoever has the window seat is already seated, having gone on before us, and is vaguely amused by the whole thing. Someone ought to be. We manage to get me seatbelted in, and then we wait for everyone else in the world to board the plane.

And then we sit at the gate and wait. Usually the luggage crew don’t know what the hell to do with the power chair, which is ridiculous because people do travel with them. I’m living proof. I’m not unique. And yet every time, my brother has to show them how to engage the brakes, how to drive the thing, where the fuse is to disconnect the power – which is understandable, every single chair is unique – but then they don’t seem to know how the F to load the thing onto the plane itself. These people trying to figure that out delayed our flight almost half an hour once. And the pilot announced overhead exactly what the delay was about and cheerfully pointed out that if we wanted to look on the right-hand side of the plane we would see my chair being loaded onto the cargo. That was fucking delightful, being singled out like that. It was the best thing ever. There is nothing quite like giving a plane full of irritated people a target for their aggression. Pro tip: disabled people absolutely love having attention called to them. Introverted disabled people, doubly so. I said out loud to the plane that I was sorry. My brother kind of wanted to punch the pilot in the face. (Happy postnote to that story, one of the passengers stopped as they were deboarding to tell me I must never apologize for taking time and space. If people get bent out of shape because we have to wait for the chair to be loaded, that’s on the flight crew, not me. It was very kind and I told him so.)

The flight itself is like any other flight in the world. For whatever that’s worth.

Phase 3 – De-planing, Boss!

About 10 minutes before we actually land, I lean over to our aislemate and explain that when we land I will do my best to lean out of the way so they can get out. Sometimes they make polite noises about “Oh no it’s fine, I’ll just wait”, until I explain that I am literally going to be the last one off of the plane. It takes like 30 minutes. First on, last off. They usually see reason and struggle to get over me at that point. We wait until every last person is off of the plane. De-planing always seems to take twice as long as boarding for some reason. The cleaning crew always start before everyone’s completely off, and I feel really bad for them that we are in their way but there’s nothing to do about it. Eventually everyone’s off, and the passenger assistance crew show up with the aisle seat. Repeat: the entire rigmarole with explaining about deadlifts to people who are or are not capable of performing said deadlifts. Repeat the actual lift in, the strapping in, and the shoving through the too narrow hallway and out of the plane. I think maybe once my chair was waiting for me, every other time we have to sit there and wait for them to unload my power chair and bring it up the ramp to me – it has to go up an elevator, through the gate itself, and down the walkway to me.

If I’m lucky, the weight is less than 10 minutes, strapped into this narrow ass uncomfortable chair while the passenger assistance people occasionally make it pretty plain that they have other things to be doing. Sometimes they offer to swap me into a different chair so we can go up to the gate and wait for the chair to come – they can’t take the aisle chair out of the skyway and they can’t board the next flight until we’re out. I leave it up to them if they really feel like transferring me twice. They always say it’s up to me, but we usually wind up just hanging out and waiting for the power chair. If I’m really lucky, my chair shows up intact. It doesn’t always. See above. Once my chair arrives, we discuss the logistics of getting me from aisle chair to wheelchair, because this is a new crew, and really there’s no easy way to do it. The power chair is much taller than the aisle seat, so going from low ground to high ground is just more difficult. The headrest is in the way, and there’s just no graceful way to do it. Plus again, 240 pound deadlift. But when we do get me into the seat? It’s like heaven after all of that. My seat is so much softer than the airplane seat. I’m back in control. I’m free to go. We load as much of the carry-on as we can onto my chair, and we get the hell out of there.

The Conclusion

I honestly don’t know if I would do this if I were traveling for pleasure. It’s definitely worth putting up with for the medical trial and the chance to participate in it, no question. But of my own volition? I’m not sure it’s worth it. The loss of dignity, the invasive touching, the potential bruises, the singling out and staring from other passengers. The people I hve to deal with are always polite and usually kind, but it’s awkward for everyone. If it weren’t for Gecko helping me through all of this, there’s no way in HELL I could do it at all. That’s an absolute. But for now, we continue this once a month. For science.

And now you have a taste of what it’s like. I do not recommend it. Don’t get ALS, it sucks.

Feed Me, Seymour

Well hello. It’s been a minute.

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

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

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

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

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

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

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

So there.

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

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

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

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

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

And that really sucks.

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

A Punch in the Gut

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…

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.

Like, FRS Sure

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!

1. Speech
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.

2. Salivation
Normal
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.

3. Swallowing
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.

4. Handwriting
Normal
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  
gastrostomy
Normal
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
Normal function
Independent and complete self-care with effort or decreased efficiency
Intermittent assistance or substitute methods
Needs attendant for self-care
Total dependence

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
Normal
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
Helpless

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.

8. Walking
Normal
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
Normal
Slow
Mild unsteadiness or fatigue
Needs assistance
Cannot do

HAHAHAHAAHHAHAHAHAHAHAHAHAHAHAHAHAAHHAAAAAAaaazero.

10. Dyspnea
None
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.

11. Orthopnea
None
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
insufficiency
None
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.

Rise and Shine

If you call me when I’m sleeping, I’m gonna miss your call. That’s how it is. It’s a physical comedy of errors when the phone rings while I’m sleeping, and it goes like this:

  1. Realize the phone is even ringing. This has always been a problem, specially if I’m having a weird dream. All my dreams are weird.
  2. Untangle limbs from the blankets by flailing like a flipped turtle. I sleep with blankets free-floating on the bed, to be scrunched up as body pillows and bolsters as needed. When I fall asleep, I usually have the comforter and sheet across my belly, one blanket scrunched up under each elbow like arm rests, and one bundled up across one shoulder to cradle my head in place. God knows how that looks when I wake up. Some days, all of the blankets are still on the bed. Some days.
  3. Find the phone. Where is that noise coming from. Unearth it from the stratum of blankets.
  4. Pick up the phone. This needs both hands.
  5. Determine who is calling. If it’s someone I need to contact, proceed to step 6. Otherwise, go the hell back to sleep.
  6. Find the bed remote, to raise the head and sit up.
  7. No seriously, where is the remote. I left it on my stomach when I fell asleep. Did it fall alongside me? Is this it? No, that’s the AVAP hose. Is this it? No, that’s the catheter tube.
  8. Seriously where is the fucking remote.
  9. Give up and try to sit up from laying nearly flat. This involves flailing my arms like a contorted back stroke, realizing I can’t sit up because I’m tangled in a Gordian knot of throw blankets, unearth myself, perform the bed-ridden backstroke again to get myself up on my elbows, and heave myself upright.
  10. Pull off the AVAP mask.
  11. Lean over to turn the AVAP machine off.
  12. It’s too far. Scootch my butt closer so I can reach the button.
  13. Paw ineffectively at the machine because my fingers are garbage meat noodles, finally manage to turn it off.
  14. The phone has stopped ringing.
  15. Find the fucking bed remote lying one inch out of my previous reach.

So yeah, if I’m not anticipating your call, I’m missing it. Leave me a voice mail. I’ll call you once I catch my damned breath.

Friday Night Panic

(It’s Friday night. J is over, we’re playing Horizon Zero Dawn. It’s late. We’ve been playing for hours and my back is a little cramped from sitting weird on the bed. Things quickly went sideways.)

we need to move

Ok, Body, we’ll shift a bit.

no, like, we need to move right now. right now. move. need.

Move where?

the chair i don’t give a fuck need to move now it’s kinda hard to breathe

Ok, I’ve asked J to let us out. We’ll sit in the wheelchair for a little bit. He’s gotten up to go to the bathroom. Let’s take our time.

HEY WHY CAN’T WE BREATHE RIGHT NOW

We can, Brain, but it’s always a little hard to catch our breath when trying to scoot across the bed. It’s an awesome bed, holy crap so comfortable, but damn is it hard to move around in. We’re just short of breath from trying to haul ourselves to the edge. It’s ok.

it’s absolutely not ok

OK YAH SERIOUSLY? WE CAN’T GET AIR IN. LIKE AT ALL.

I can reach the breath stack exerciser. Let’s use that to get a proper breath and then we’ll move some more.

it’s not working can’t breathe

WHY IS IT NOT WORKING WHAT’S GOING ON WHY CAN’T WE BREATHE HOLY SHIT

Calm. We’re just tired, let’s get to the edge of the bed and sit up straight. Expand the lungs.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Ok, how about the AVAPS machine? It’ll help. It’s designed to breathe when we can’t.

IT WON’T POWER ON WHY WON’T IT POWER ON??? HOLY FUCK!! ARE WE GOING TO DIE RIGHT NOW?! WHY WON’T IT POWER ON? WE ARE DYING!!

No, just..

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

J IS GOING TO COME BACK AND FIND US DEAD ON THE FLOOR IF WE DON’T START BREATHING!! RIGHT NOW!!

Maybe we can call him for help.

not enough breath to yell can’t breathe can’t breathe can’t breathe

WE ARE GOING TO DIE RIGHT NOW

Oh god. We really can’t breathe. What do I do?

You Calm Down. You’re Not Dying.

Um…you’re new. Hello? You are?

Hello. I Am Your Higher Brain.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

YOU KNOW WHAT IF WE DIE RIGHT NOW IT WOULD TOTALLY BE OKAY IF THIS IS WHAT IT’S GOING TO BE LIKE ALL THE TIME BECAUSE WE CAN’T BREATHE

I have a Higher Brain?

Sure. You Know How When You’re In A Crisis, You Get Really Pragmatic And Don’t Panic But Just Do What Needs Doing? That’s Me. I’m The Opposite of Lizard Brain, Your Primal Instincts.

sssssUP, hOW’SSSS iT gOING?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

HEY WE SHOULD TOTALLY CALL 911 RIGHT NOW. TRY TO STAND UP, GET SOME AIR IN HERE?? WE ARE GOING TO DIE. LITERALLY DIE.

I’m standing but it isn’t helping!

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Listen. Calm The Fuck Down. If You Can’t Breathe, You’ll Pass Out. That’s Not Dying. You’ll Have More Than Enough Time For An Ambulance To Arrive. This Is OK.

BUT EVEN IF THEY COME IN TIME THIS IS JUST GOING TO HAPPEN AGAIN AND AGAIN. MAYBE WE SHOULD DIE AND BE DONE WITH IT. THIS IS THE WORST THING THAT’S EVER HAPPENED.

J is here, let’s have him call an ambulance. I’m standing here gasping like a fish and I can’t tell him what’s wrong. Oh no, he’s ..kinda panicking.

Then Don’t You Think We Should Stop?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

STOP WHAT? DYING?

Panicking. If We Calm Down, We Will Be Able To Breathe.

Wait, is that what’s going on? …Is that why we can’t breathe?

ALS Isn’t A Switch. It’s Gradual. You Don’t Suddenly Lose Use Of Your Hands, Why Would You Suddenly Stop Being Able To Breathe?

Oh. Ohhhhhhhhhhh. Shit. OK. Yeah. J even just asked us if that’s what this is. That’s exactly what’s happening. This is a panic attack. This is the worst panic attack I’ve ever had in my entire life, but it is just a panic attack.

can’t breathe can’t breathe can’t oh…ok..i think i remember how to. ok. gonna try to pull in breaths nice and slow. ok. i think we are ok.

NOT DYING! WOOOOOO!! HEY, OUR BAG JUST CAME UNDONE AND WE ARE SECONDHAND PEEING ALLLLLLLL OVER THE CARPET!

My Job Is Done. Later, Guys.

Cool, only now what do I do about calming J down and dealing with the pee going everywhere?

Not My Department.

HEY IT PROBABLY CAME UNSCREWED A BIT WHILE WE WERE SCOOCHING ACROSS THE BED, YEAH? THAT WAS LUCKY.

Wait, what?

yeah what, how is this helpful?

WE’RE NOT PANICKING ANYMORE. NOW WE’RE WORRIED ABOUT THIS. THAT WAS A USEFUL DISTRACTION. J’S WORRY AND THIS MINOR CRISIS HELPED PULL US OUT OF THE WORST PANIC ATTACK OF OUR LIVES. OH ANDI GUESS HIGHER BRAIN HELPED A BIT. BUT NOW WE CAN BREATHE. HOLY SHIT THAT WAS SCARY.

You make several fair points.

COURSE. THAT’S WHY I’M THE SMART ONE.

…Whatever You Say.

Aftermaths

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

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

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

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

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

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

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

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

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

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

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

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

Pee Brain

When will I stop writing about urine, I hear you ask.

NOT FUCKING TODAY, FRIENDS.

Strap on your diapers, because I am not done yet. BUT MAYBE SOON!! For today I’ma tell you how my urology appointment went.

The short answer is: disasterously, and then really well. The longer answer is: I fucked up and thought my appointment was at 10:30, not 10, and so I missed it like an idiot. I made another appointment for their next free spot, June 4th. Meh. Luckily, someone ELSE fucked up THEIR appointment and missed it, so they called me as I was wheeling myself back to my van and they were able to see me after all.

Two wrongs do, in FACT, make a right.

Sooooo I wheeled myself back to their clinic, we filled in my new patient paperwork even though I am not a new patient, and after all the stress of the morning, J and I got a bit testy with it. “Please list all of your medications” it said. “Go fuck yourselves, you already have this information like eleven times and I am NOT WRITING OUT ALL THIRTEEN MEDICATIONS AND VITAMINS I TAKE,” I thought, and J angrily wrote in “see your records”. I felt guilty for like…a microsecond, because they were being nice and seeing me after I fucked up but HOLY SHIT SERIOUSLY YOU GUYS ALREADY HAVE THIS INFO AND MY HANDS DO NOT WORK SO I WILL NOT BE WRITING YOU A LIST. AGAIN.

We were called back to the room. I was cheerfully asked if I could provide a urine sample. I thought, but did NOT say, that they were welcome to wring out my diaper for some if they want it that badly. Out loud I said that would be very hard, can we skip it. She cheerfully said it was no problem, ushered us to our room, and then came back with an ultrasound machine to see how much urine I had in my bladder. Luckily I was able to lean back my wheelchair so she could turn down the waistband of my skirt to get goop all over me, swipe a wand across my belly, and announce I have 208.

208 what, was never explained.

She disappeared and the urologist came in. I am getting of an age, finally, when sometimes my doctors are younger than I am, but my first thought was “what is she, TWELVE??” so I had to quiet my internal grandma. In order to address my outer grandma problems. She recapped my problems in a nutshell, from my records, to see if she understood properly. She pulled a list of my meds from her chart folder to confirm them with me.

I FUCKING TOLD YOU SO.

She asked how often I get up to go to the bathroom. 3 or 4 times a day, I told her, but it’s closer to say anymore that I go to the bathroom, then get up. Or get up as I am going. Depends on the day. Depends on my body. Depends, literally, are on my body. I would like that no longer to be necessary. She told me that 4 times a day isn’t enough, I really should be going every 3 or 4 hours.

My heart sank. PLEASE PLEASE PLEASE DO NOT SUGGEST KEGELS AND REGULAR BATHROOM BREAKS. PLEASE. PLEASE KNOW WHAT ALS IS. I CAME TO YOU BECAUSE THE OTHER ONE DIDN’T.

“That said,” she told me, her manner becoming instantly less dismissive, “that isn’t very useful to you. You can’t spend half your day and all of your energy just peeing. Not to mention the dramatic increase in fall risk, from transferring in and out of your chair all day.”

Friends.

Friends?

FRIENDS.

The heavens split asunder and choirs of angels with pom poms appeared in the sky and the stars spelled out SHE FUCKING GETS IT. I remembered to breathe.

“Let’s talk options,” she said, and she told me everything I’d already researched myself. We agreed the superpubic catheter was a great option for me, she told me the risks and rewards. It’s a procedure done under sedation, she said, but she’s done emergency ones at bedside with just a local; it’s really simple. I did not tell her I had watched a video of one being done bedside. She said her people would call me to schedule the procedure, and to expect to have it done within the month.

Just like that, five minutes. All agreed and going. They called me the next day. My procedure is on the 4th, the day my rescheduled appointment was supposed to be. Within 2 weeks, I will be on my way to diaper independence. I have so many pairs of cute underwear I can not wait to be able to wear again. I can wear my awesome leggings again without having to worry about peeing them if I can’t peel them off fast enough. I will be done sitting in my own urine because I could not get out of bed fast enough and wondering if I have the energy to get up and do something about it or not.

Most importantly?

I will be done telling complete strangers on the internet all about my incontinence.

And now you’re as excited about this as I am.

Scars

ALS is whittling my body, and marking it as it goes.  Most of the changes to my body are slow, gradual shifts that are only noticed once the damage has gone pretty far.  Holy shit, I’ll realize one day, the palm of my hand is concave at the base of my thumb.  Huh.  My calf just tapers from my knee to ankle, instead of the graceful curve it used to have.  A slow, glacial injury without drama, but still with much import.

Some of the marks ALS has left on me were more sudden; sharp, violent signs of change.  I’m no stranger to scars – I used to self-harm as a teen, into my twenties, and what is a tattoo after all but a pattern of scars filled with ink?  Each of these little marks my disease has left me tells a little piece of my story – a concession, a loss, a search for an answer.

The first scar is the first nail in my coffin.  One and a half inches, on the outside of my left thigh.  A thin, straight line of white against pale skin, flesh tone once described as “ghost-ass white”.  I’m regaining sensation there, but for a long time it was a patch of numb skin.  I got this scar from the biopsy that sealed my diagnosis.  A little chunk of flesh taken to examine for nerve degeneration, degeneration that was confirmed and my fate thus sealed.

The second scar was First Blood. An L shaped mark behind my right side, under my rib cage. I took a fall getting out of a car, catching my flesh on the corner of the door as I went down. My first disease related injury, and sadly not the last – but so far the only one to leave a mark on the map of my body.

The third scar is two-part. A dash and a dot. The scars of my port surgery. A dot over the right artery in my neck, where a line was fished through, snaked into my system of valves and tubes and blood, and connected to a bubble of plastic that rests under the second scar. A one inch line cut and pulled apart for the port to be shoved in and connected to the plumbing. This was a violent scar but a relief to get; it’s made infusions of medicine indescribably easier. My only visible to the public scar, a surgical badge of Legitimately Sick.

The fourth scar is one of persistence. A year of puncturing the port for infusion has left a pink dot under the incision line. Scar tissue building up with each stab, eventually making the stabs less painful. A welcome scar.

I have an appointment on the 20th of May to discuss acquiring my fifth scar, the scar that will hopefully make my life oh-my-GOD so much easier. I’ll speak with a urologist actually familiar with ALS and therefore not liable to suggest that I do some motherfucking Kegels to keep from peeing myself all the time. I’ll ask for a superpubic catheter to be inserted, and hopefully get approval and a surgery date. And hopefully then I can go back to wearing clothes that I don’t have to strategize how to get out of in 30 seconds or less otherwise they get peed on. I wanna wear my shark onesie again.

I’m willing to get a scar over it.