Category: Diagnosis

I Feel

tragerstreit4 Comments

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.

Home. Coming.

tragerstreit7 Comments

Seven years ago today, I had just started cleaning and painting my new home. I’d had keys for a scant two days and there was a lot to be done. Seven years and two days ago my dream of homeownership had finally come true. It was pretty much my dream home. Huge backyard, a shed AND two car garage for storage, five bedrooms, huge kitchen. I had such dreams for that house. I was going to convert one of the bedrooms to be a kitten room and foster kittens. I was going to install baker’s racks I my kitchen and get serious about patisserie in my spare time.  My office was set up for studying for my computer science degree in the works, a spare bedroom-slash-library for guests, my bedroom with a ceiling like the night sky. It was gonna be a giant garden in the back and a haven for the snakes I was delighted to learn lived there.  I was going to install bat houses.

Six years, eight weeks and one day ago I received news that changed everything.

One of the first things to hit me, after the whole “holy shit, I have a terminal disease and I’m going to die” thing was “oh no I have to sell my house.” My new dream house was two story you see. I was beyond crushed, I was devastated.  I hadn’t even had it for a year and now I was looking at having to give it up. And unfortunately giving it up was not a question. I tried every scheme I could come up with. There was no way to put a master bedroom downstairs, no way to expand the downstairs bedroom to encompass a roll in shower, no way to put a lift in to get the wheelchair upstairs. The hallway was just too narrow. The layout was just too open downstairs. The only aspect of choice I had was, do I sell it now? Or do I wait until I’m physically forced out of the place.

I chose option one. The thinking was, I could get out of this house and purchase a new one while there was still ability in me to decorate the new place. If I waited until I was wheelchair-bound and had useless hands, I wouldn’t be able to make the new place my own. So I sold it pretty much right away, at a nice profit, even.  It wasn’t even on the market a week. I had owned my dream house for just over two years. I rented an apartment as a temporary measure, because I knew it would be a little bit before I could find the perfect place. The new place had to be single-story, had to be wheelchair accessible or at least have the bones to renovated to be so. And crucially? It had to be affordable on what I was going to make while on disability. I had estimates of what I was going to be earning, and at the time Danielle was going to move in with me so I would have help with the mortgage.

It has turned out to be a nigh impossible task. The economy recovered in spades, and suddenly I couldn’t afford literally anything in the area. People were coming from California and other places with cash to purchase homes and I simply could not compete. Real life then conspired to interfere, Danielle and I split as friends, so I was suddenly going it alone. Jay decided to move in with me and so all of his needs also needed to be addressed in the house search.  My stepfather passed away, leaving my mother unable to afford her home, and so I moved her in with me in my 2 bedroom apartment and we weren’t sure what was going to become of that, if her living with me would be a permanent solution or not. My needs became very, very complicated, my buying power dwindled to almost nothing thanks to the booming house market and the pittance you earn on disability, and my “temporary” apartment became more of an unwanted permanent fixture.

Staying permanently in an apartment was never an option though. I need a roll in shower. Apartment complexes tend to frown upon you doing demolition in their units, so installing one here is not an option. Ideally I wanted to stay in the same-ish area so I could keep near my support network.  Leaving Portland metro, thus leaving the care of Doctor Goslin, was NEVER an option. I need a bedroom big enough for my bed, wheelchair, and a lift to eventually get me out of bed into the wheelchair. This place simply does not have that much space; I play a stupid game of Tetris with my wheelchair, walker, cat scratcher, and closet door every time I get dressed. And even after the economy recovered somewhat, and even though Jay was willing to commute up to an hour each way to work every day so I could extend our search parameters to include BanjoLand (where our neighbors were GUARANTEED to hate our liberal asses), there was simply nothing out there for me. Everything we found was falling apart, or the master bathroom wasn’t even big enough to get a wheelchair in, much less turnaround in, or the side bedrooms where J and my mother would be staying were closets.

Quick shout out here because credit where credit is fucking DUE.  My real estate agent Christina Griffith is one of the most patient people on the face of this planet. I half expected her to give me up as a client at any time. It was frustrating for us both, but she never quit on me.  I didn’t have an option to quit and she did, and I’m grateful as FUCK she did not take that route.

All I wanted was a place to live until I died, one way or another. My last breath in my own bed, with my cats beside me. No more transition housing. A place I could get around in my wheelchair, with place to store all of the necessary equipment (like a huge-ass Hoyer lift) that will become part of my life as the disease progresses, with space for the people taking care of me. (And the option for grocery delivery because I’m in a wheelchair and mom is blind and J can’t do everything.)  I didn’t care what kind of dwelling it was. House, condo, manufactured home, as long as it was accessible, and affordable, I could literally give a shit. It has been the single greatest stressor in my life ever since I was diagnosed. No hyperbole. All I want is a place to just be and be allowed to die in and not have to worry about my belongings getting packed up and my cats transitioned a to new environment separate from me while I still drew breath. The actual disease and its effects have actually been secondary to all of this. My life has primarily been all about finding a home.

It’s taken five years.

One thing I’m definitely grateful for is all of the people helping me look. My realtor is amazing, as I said, (seriously if you’re in the Portland metro area look her up) and I had lots of friends and family keeping an eye out for me, as well as automated searches on places like redfin. This lead came from my psychiatrist of all people. He’d been keeping an eye out, but most of the places he found were way out of my price range.  A client of his was sadly transitioning to a care home, and his wife had to sell their home. It was a depressing thing for them but could be a godsend for me – it was already ADA set up. Ramps to everything, even the backyard, doors wide enough for a chair in every room.  He gave me the owner’s email address, and I didn’t have high hopes to be honest, because there was no way I was going to be able to afford this place. I contacted them anyway, and the wife turned out to be a total peach.  She answered all of my questions gracefully,  but sure enough their asking price was $50,000 more than I had been approved for. I told her thanks anyway. She said hang on. let’s talk.  It meant a lot to her that we’d been introduced through my shrink, and she really wanted the accessibility features to be of use to someone. Let’s have me look at the place, she said, and we can discuss it.

I didn’t get my hopes up.  I didn’t dare.

We toured the place, and it was such an awesome feeling to be able to actually go into a house I was looking at purchasing, and wheel around freely with nothing off-limits to me. Typically when we go to look at a house, I stay in the van while J and Christina go inside and then report back to me. All I’ve had to go off of was their opinions and maybe a video tour taken on Christina’s cellphone. But here, here I was able to see for myself. And here I was able to see myself living in this space.  This could be My House. The space was big enough. There are already ramps everywhere. The shower even was already a roll in shower. It was not quite perfect, the other two bedrooms were still kind of small. But with a little renovation we could make things work. So not daring to get my hopes up, I checked with my bank to see if maybe I could get approved for just a little more money. It still wasn’t what they were asking, but it was all I could afford.  The bank said OK, and I presented an offer tens of thousands less than they’d said they were going to ask, fully expecting a counteroffer or flat-out refusal.

They said yes.

I get the keys tomorrow.

It’s been a very fast roller coaster ride, having to scramble to get all the paperwork together, and proving that even on SSDI I can make the mortgage (thanks ENTIRELY to Intel’s retirement plan), getting everything coordinated and submitted and 10,000 signatures on triplicate and witnessed by two rabbis and a chimpanzee, but it’s all sorted. It’s taking literally everything I have saved and my 401(k) and what little stock I still owned, but we’re doing it. There’s gonna be some work to do, we need to move a wall to make one of the bedrooms a livable size for J. There’s painting of course, but that’s just cosmetics. My fondest wish is to see what putting in central AC will cost, because the placement of the windows are not great for the window units that I have and I am a huge baby when it comes to heat and it’s going to SUCK when I’m too hot and unable to push the covers off. I’m not sure I’m going to be afford AC, but it’s a dream I have. Buying a house is incredibly expensive and there’s always going to be one more thing to purchase that you never thought of. I have to hire movers. Not that I don’t have a squad of willing volunteers, but for one – COVID is still very much a thing, even though America has seemed to decide that it’s boring now so we’re just not gonna quarantine anymore – and for two, most of my friends are willing but not necessarily able. I’m 45 years old and most of my friends are around the same age bracket. We can’t just haul shit around willy-nilly anymore. And my adjustable bed weighs a ton and I’m not subjecting people I love to that nonsense. So I’m doing what I can and praying that I am able to afford it all. So hey, if you ever thought about dropping a dime into my GoFundMe, now would definitely be a good time.

I called all of the utilities today to transfer them into my name, and every single one of them wished me congratulations on the new house. It’s a magical phrase. My new house. I was sincerely beginning to despair it was ever going to happen, and I would be relegated to sponge baths in my bed until I needed to be transferred to a care facility. I’m so happy it was wrong. I’m so happy this finally happened. I’m so glad I get a permanent address at last. I wish it hadn’t taken so long, and I’m no longer able to do all the decorating myself, but I can be a damn good supervisor and project leader. My friends are amazing and they will help me. I will have the space worthy of dying in, at last.

My final resting place.

Not Safe for Television

tragerstreit1 Comment

Generally speaking, there are two reactions to a terminal diagnosis. The first is to try and cram as much life as possible into the time remaining – you become obsessed with completing bucket list items, reaching out to estranged loved ones, and generally doing all of the things that you swore you’d get around to but never did. Your remaining life becomes a frantic race against time. The second reaction is to go about life as usual; either through pragmatism or complete denial, nothing really changes about your day-to-day.

I’m absolutely in the second camp. I’m a complete pragmatist. And honestly, I just don’t have the energy to be at first kind. There are a lot of things to do that I would have liked to complete, but I’m not going to devote my life to checking off boxes. I will go out of my way to see more shows and hang out with those I love more, but really that’s about the only concession I’ve made. I’d have loved to go to Japan, and I could probably still make that happen if I REALLY wanted to, but now it’s just too much of a pain in the ass.

To a lot of people this probably seems like I’m wasting what little time I have left. I spend the vast majority of my time at home, in bed, screwing around on the Internet, and hanging out with my cats and my best friends. This is exactly what I would be doing if I did not have a terminal disease. It suits me just fine.

While I’m screwing around on the Internet though, I usually have something playing on the television. There are a set list of things that are probably on my television at any given time, even when I’m sleeping. Nature shows, Mr. Rogers, Bob Ross, science programs like Cosmos or anything by Brian Cox, Invaders Zim, Monty Python. Those are the main ones. There are also movies that I will watch over and over like Clue, The Last Unicorn, Nightmare Before Christmas etc. Even if I’m not really paying attention, it’s on-screen. I don’t tend to watch new programs very often, even though I have a lot of time in which to consume new media. I’m literally in bed all day, with nothing better to do. I could be watching all kinds of new things. But no. It’s David Attenborough.

My friends expressed concern over this habit, not as a criticism of my lifestyle so much as concerned that one day I will feel like I’ve wasted what time I had. Sometimes I think about that, but overall I’m really not worried about it. I’m doing exactly what I feel like doing. I did, however, talk to my therapist about it, about how I kind of feel like at least I should be watching something different. But the usual shows are just so comfortable. He told me it’s because they’re safe; I know what’s going to happen, there are no nasty surprises waiting for me in it. My real life is complicated enough and I just want to give my brain a break.

My therapist is an extremely clever man.

He’s absolutely right – that’s exactly what it is. I have a real hard time reading any new books or watching any new television because I don’t know what’s going happen. I’m nervous that this new media is somehow going to somehow betray me. It might seem a little bit ridiculous, but due to the way that my brain is wired, new media is very much like meeting someone new. Wholly unpredictable and it feels unsafe. If someone introduces me, I have some kind of endorsements and some kind of assurance that things aren’t going to go sideways, but usually I hang out with the ones I already know because I can relax.

The other day I got brave and binged the entirety of Fleabag.

This was a very bold decision on my part, a little reckless. I’d seen some clips though, and a lot of people told me it’s hilarious, and it’s won a lot of awards. So I watched all of it.

I genuinely regret watching the show.

It’s a black comedy. It is brilliant, the writing is amazing, the actors are wonderful and it absolutely deserves all the praise and awards. And it is ABSOLUTELY not for me. There are genuinely hilarious moments in it, but for the most part it’s just watching this woman’s life become a complete train wreck. Every time she gets a little bit of a break something knocks her three steps back. She’s kind of a toxic person so she digs her own holes, but most of the people in her life are also just genuinely horrible people who say and do terrible things to her. Because I’m an optimist, I kept watching and expecting things to turn around for her. But no. The show ends in a complete heartbreak. And it completely destroyed me.

I was up watching until 5:30am and I was up until 9am crying like the heartbreak was my own. And for the entire next day I was in a really deep melancholy. Because of all of this I have a renewed dedication to watching the same shows over and over and over. I’m safe there. That sucked. My life is indeed entirely too dramatic already. The only drama I need to add to it is whether or not that cheetah catches up to the zebra.

I may be wasting my life away, but I’m comfortable. And I’m perfectly okay with that. Boring is sometimes the best thing in the world. Some people need to spend the rest of their time climbing mountains and composing operas, and I’m just not like that. I chose to work for as long as I could, and I will happily spend the rest of my time playing video games and eating junk food and petting my cats and learning about cool creatures.

Programs about arthropods are my favorite.

Feed Me, Seymour

tragerstreit5 Comments

Well hello. It’s been a minute.

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

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

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

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

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

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

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

So there.

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

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

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

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

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

And that really sucks.

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

A Punch in the Gut

tragerstreit1 Comment

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.

Why

tragerstreit2 Comments

Oh man, so the medical trial ate my life for awhile there – I was going for 3 or 4 days every two weeks and that was kiiiiiiiinda my job and existence for a bit. With all the attending fuckery, of course.

In the meantime, I was officially and finally terminated by Intel. I have applied for SSDI and not received it yet, though I’m not anticipating any troubles there. The agent I’ve been working with has been using the phrase “WHEN you’re approved” rather than IF. ALS is kinda a shoo-in. I’m not 100% confident that there won’t be something to go wrong, this is a government thing AND a medical thing soooooooo the situation is RIPE for angst and bureaucracy to do its thang.

I lost my health insurance through Intel as of the 30th of September. I don’t have Medicare through SSDI yet, so I am in Happy Funtime COBRA Land. I’m paying $750 a month to continue my coverage.

Orrrrrrrrrrr……I will be.

I signed up for it right away. And then I got a call on Tuesday the 1st about some parts I’ve ordered for the SS Opportunity, like longer armrests. They tried to bill my insurance and Providence says I’m not covered. I panic a little but not too much; I only just signed up for it after all and maybe it takes a couple days?

Wednesday, they delivered my $17,000 box of infusion meds. Thursday, the nurse came to my home to access the port. Friday, the wheelchair peeps called because my insurance was STILL not active. I start to panic a bit more. Saturday I had the home health nurse come out to swap my catheter. Monday I got a phone call from the infusion pharmacy because guess what? My insurance is invalid! So I called Intel’s HR in a complete panic and learned:

  1. I am covered by COBRA as of the 1st of October. HOWEVER….
  2. COBRA is a pre-pay benefit. So…
  3. I’m covered but it’s not active until I pay the $750.
  4. I can’t give them a payment over the phone to sort it all out.
  5. In fact I can’t pay them AT ALL until I receive a bill.
  6. I won’t get a bill until the 10th of this month, and…
  7. it will take up to two weeks for the payment to go through, AND
  8. I’ll be billed for two months, October and November.

In the meantime I have two options:

  1. Pay out of pocket and wait maybe months to get reimbursed once the insurance is active (Not with a $17,000 bill I’m not gonna)
  2. Call my medical providers, explain the situation, and ask them to please try rebilling in two to three weeks? But please keep my existing medical appointments anyway?

“I will gladly pay you in 3 weeks for a doctor today.”

I just….seriously. This is what I have. This is how it works. I hate the American (lack of) healthcare system SO MUCH. I should not be running interference between my insurance company and my medical providers. I should not be spending hours on the phone. I should not be worried about the financial aspects of dying, I should be allowed to just be DYING. I should be spending my time in bed watching Carl Sagan explain the cosmos to me while eating gummy sharks and finding cute Halloween pictures on the internet while my cats sleep at my feet, surrounded by a dozen blankets.

Dying should not require a fucking secretary.

Scars

tragerstreit3 Comments

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.

Clinical Anxiety

tragerstreit1 Comment

Clinic was Monday! Let’s break down how it went, shall we?

PT/OT: My hands now no longer register ANYTHING on the strength test. Fuck. My arms are still plenty strong, though. My biceps are a force to be reckoned with from essentially doing push-ups on my walker every day. I have an appointment to follow-up with Deb the Awesome to reimagine my spider hand braces, since my wrists droop badly enough now they’re not helping much. It doesn’t do a lot of good to keep my fingers propped up if my hands as a whole are curling under. My finger joints are doing great though, still a lot of flexibility in them so I’m not going to be clawhands any time soon. Yay!

Dietician: (Hi, Kelly!) My weight remains stable, so I’m to keep doing what I am doing. I need to keep mindful of feeding myself while I’m at home, now, since I don’t have the routine of work to set that schedule for me. My mom doesn’t know to bring me food unless I ask her because she’s old as hell and eats like, a tic-tac a day and calls it a meal. (Hi, Mom, love you!)

Nurse: I forgot to ask her what my chair weighs. Dangit. It’s written down somewhere in my chart and I’m curious what that thing weighs without me in it. Combined, we are 627 pounds of geddafuggoutmaway. She arranged my appointment with Deb, and I didn’t otherwise have much for her. I rarely do. That’s a good thing.

Social Worker: Have I waxed poetic lately about how amazing the ALS Association is? Because damn. Single-handedly saving my sanity more than once, and saving my ass multiple times. We arranged for them to pick up equipment that I’ve borrowed (FOR FREE) that I no longer need because my disease has progressed beyond their use. We then spoke about some other situations that are stressing me out, like the lack of social services for my elderly disabled mother, and she promised to dig up what resources she could for my mom in our area. She sent me an email not even a day later with a bunch of places to check out. THAT is how amazing ALSA is. My mom’s not even on their roster, but because helping her would help ME, they were totally on it. I LOVE THE ALS ASSOCIATION.

Neurologist: Usually I’d be seeing Dr. Goslin, but today I met with her new partner. I’d seen him talk at the ALS Research Symposium, and I’d been given his bio before when I was asked to write something up for him explaining why the ALS Multidisciplinary Clinic was such an awesome thing. It was nice to meet him, and the dude has one of those old-school doctor bags that J wanted to steal. Plus for geek. It was a general get-to-know-you kinda appointment.

Speech: These appointments always go fast because I’ve got no symptoms at all yet. Puff up cheeks, move your tongue, eat this dry-ass graham cracker so I can watch you swallow. NBD, nothing to report.

Respiratory: Yeeeeeah this is always my absolute least favorite, not least of all is because it’s actually HARD. I’ve actually been noticing decline here, and since this is the part of ALS that actually IS going to kill me, I don’t like having a concrete measurement of how shitty my disease is. And yet. I want that measurement, so that I know, so that I can plan, and manage expectations. I came to this appointment knowing my breathing has gotten a bit worse lately; it’s taking a bit longer to recover when I exert myself, and there’s been a few times I wake up in the night because my breath is a little short. I also had to report that my CPAP machine (which I am now supposed to use every night) is busted, doesn’t power on at ALL. We are going to get me a new machine, called an AVAPS and I have no idea what the difference is because I keep forgetting to look it up.

Hang on.

“Noninvasive mechanical ventilation with average volume assured pressure support”

That tells me nothing. 2 secs.

…Oh. It’s…basically a non-invasive respirator. So it’s hardcore. OK then. That’s…intimidating. But I had the choice between getting my CPAP replaced or getting this new hotness, and since I still have Cadillac Intel Insurance for another year, I really want to get the expensive stuff now.

With that out of the way, we did all the usual tests. First they stick a rigid plastic thing in my mouth and I exhale as hard as I can to make these little indicators move; it measures cough strength. Cough strength is still normal; it was down ten points from last visit but she wasn’t worried about that at all. The next test involves a soft plastic mask over my nose and mouth and inhaling sharply; I always ace that one by going beyond what it measures; I guess I’m really good at..sucking…? Monday was no exception. The last test is the worst. Both in what it portends, and the work it takes to perform. My dudes, it is HARD. It blew goats even when my lungs were as strong as ten oxen. It involves inhaling deeply, plugging your nose, and then blowing out as hard as you can, for as long as you can, while getting encouragement shouted at you to GO GO GO MORE MORE MORE MORE and then when you can’t possibly exhale anything else and you feel like you’re going to pass out, another sharp, fast inhale.

Do that three times.

It actually makes J a little uncomfortable to watch, because it’s so obviously hard. It’s intense, it feels like hell, and at the end you have a number that represents your average lung capacity. When I started going to clinic, my scores were over a hundred percent – a very strong set of lungs. Over the last year, I’ve watched that number go down. She wasn’t concerned, really, even 80% was still really good! and she had no recommendations for me except to continue with the breath stacking exercises, which is where you inhale as much as you can and then use a balloon and tube to squuuuueeeeeeeeeeeeeze more air in. and hold. and release. And when you’re no longer light-headed, do it again. And again. I often describe it as reverse drowning, because that’s what it feels like. I do that, but not as often as I should. Six months ago at Clinic I hit 70% and she was a little less cavalier about me not doing them every day. 3 months ago on Clinic day, the machine was busted so I was spared. She wasn’t worried about it though, as my other tests were about the same as last time and she expected the same for this test, too.

I knew it wasn’t going to be the same. I feel a difference. When I eat too much food, I can feel that it’s harder to breathe – not that I’m short of breath, exactly, but I feel that when my lungs don’t have proper room to expand, there’s less strength in my diaphragm to bully the rest of my guts out of the way, maybe. It’s not harder to breathe, exactly, but I notice that I am breathing. And I was keenly aware that the breathing test this time was the hardest it’s ever been. I could feel veins on my forehead. She told me the result.

60%.

I’ve gone down 10% in six months.

I am now to do breath stacking twice a day, and sleep with the AVAPS every night, once it arrives. Next Clinic maybe we’ll do the respiratory early; having it be the very last thing in the day might have fudged my numbers a bit since I’d be tired. But somehow, I didn’t think that will matter. I didn’t take it well at all, and was in a shitty mood the rest of the night, and spent pretty much all day Tuesday crying or sleeping. I feel better now, hence why I have it in me to post tonight, but it kiiiiinda cemented something I’ve been thinking the last few months, something that I haven’t said out loud or posted or anything because I don’t want panic, either from myself or from any of you.

I am pretty goddamned sure I don’t have another 4 years.

I mean, it would be nice? But I’m not going to live to 50. I know that. I’ve been really fucking lucky to make it 4 years, and still be able to be on my feet awhile and wipe my own ass and everything. Some people with ALS don’t make it through ONE, and I’ve already had four, officially diagnosed, and probably closer to six since symptoms first appeared. I’m so, so fucking lucky. I get to see my death coming and plan for it. It was just rude as fuck to see that imaginary timeline become somewhat ..truncated, from what I was telling myself. But now, the part of ALS that will kill me has officially begun to kill me and I don’t have as much time as I thought.

You know what though?

That’s okay.

It really is. This is how ALS goes. This is normal. It’s okay. I’m alright.

Tonight, I am sanguine. There will be more freaking out; count on it. (See you at 3am, stupid brain) At this exact moment though? I have a clarity most people will never, ever experience. I see a world in 5 years without me in it, and it’s a good world and those I love are doing fine, in that long-term place. There’s a delicious release that comes with knowing so far in the future is officially Not My Fucking Problem. Today though, I am making many short-term plans. Hangouts with friends. An art show opening. The Walk to Defeat ALS on Sunday. A zoo trip with family. Neil DeGrasse Tyson – TWICE – in November. I still have a future to plan. It may be abbreviated, but goddammit I have SOME time. I get to make plans. It’s a fucking privilege to tell someone I’ll come to an event in April and know I can. After that. Who knows. My timeline is finite, truncated, and not guaranteed, but I have one. I can see what’s coming and make peace with it before it happens. I get the rare and amazing privilege to become friends with my own death.

And that is fucking awesome.










Unkind

tragerstreit1 Comment

I was told twice yesterday that I had been unkind. Once about a caustic post I’d made that I didn’t realize had such a caustic tone, which I didn’t intend at all. Once about letting in-character anger spill over into an out-of character moment during a game.

It’s fucking with me more than I want to admit out loud.

I want to think I’m patient and a nice person. I want to BE a kind and soft person. With swearing as needed. I also want to think I can take constructive criticism. Both times, I tried to take the information in with a whole mind and open heart. I freely accepted valid points, admitted areas of ignorance – I genuinely did not realize my irritation with a sub-group of people spilled over into a perception of complete disdain and impatience for a related whole category of people. I vowed to be more aware, and work on it, and thanked them for bringing it to me. It’s a brave thing, to tell a friend they’re being a bit of a bitch.

But it’s fucking with me.

I don’t want to be unkind. It bothers me that someone would think I am. It bothers me that I speak without careful consideration, to have words and actions misconstrued.

So I lie awake until 3AM mulling over every interaction I had that day, wondering who else thought I was being a bitch, and what I can do to make amends. Usually these criticisms are self-inflicted, so coming from an external source, that knows me well, is especially jarring.

Before I moved away from Sacramento, several friends told me later, I became a bit of a bitch. My joking a little too caustic. I wondered if it were a subconscious self-defense mechanism, distancing myself from people I cared about in an effort to make it less shitty to leave.

I’m terrified of doing that same thing, knowing that I’m dying. From Diagnosis Day I have been fearful of being that embittered person in a wheelchair, lashing out at loved ones because I’m afraid to leave them. To be remembered as a total and complete bitch at the end of my days, in an effort to somehow distance myself from them so that the parting will be easier. Knowing it won’t help a goddamned bit. I do not wish to be a caustic person with nasty words where my love should be.

I’m glad my unkindness was called out. I’m glad I have time to work on it.

But until I am nothing but kind, it’s gonna fuck with me.










Saddiversary Part the Fourth

tragerstreit7 Comments

Four years ago, I was told I was going to die.

Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.

I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.

My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.

For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.

But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.

Because fuck that shit.

Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.

My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.

One more year down. One more point for me.

Fuck yeah.










Rad

tragerstreitLeave a comment

The latest word on the street in ALS Land is Radicava.

It’s a new, FDA approved treatment, and we’re all pretty dang excited about it because there’s been nothing new AT ALL in 30 years. All we have is riluzole (brand name Rilutek) which you take twice a day and maaaaaaaaaybe gives you another six months or so? Or maybe destroys your liver? Other than that, the only treatment is really an attempt to mitigate some of the symptoms, like the muscle twitches (‘fasciculations’) and cramps, your muscles locking in place (spasticity), the complete fatigue because everything is a lot harder when half the muscles in your legs are gone, depression and anxiety – because it’s not really the five stages of grief so much as the five constantly cycling whirlwind moods of grief. Sometimes I hit them all on the same day.

Radicava (generic name edaravone) isn’t a miracle drug, by any means. It’s completely ineffective for a lot of people, and at best gives just a 33% reduction in the rate of decline. It has a lot of issues, of course, it can cause problems in people with asthma, and well..it’s expensive as all hell. I’ll get to that in a moment. For now, here’s the basics, if you want to read some more, and here are some of the naysayings about it.

Me, though, I wanted to try it from the get-go. I’ve been abundantly clear (or so I thought) that I am willing to try any new treatment, just to be doing something, to provide a little more data for future research, if nothing else. Every Clinic Day, we asked about the latest updates, the most recent news, when is it available. And so I was frankly…crushed, and a bit angry when I found out at last Clinic that people have already been trying it and I wasn’t contacted. That anger increased when they seemed surprised that I was interested in trying it. Like..how could I have been more clear?

Anger turned to rage when I was told that insurance would not pay for it. Because..once again..I have had ALS for too long. Because statistically, I should be dying any minute now. The average life expectancy is three to five years, and I hit three years in April. Never mind in actuality I’m still VERY MUCH alive and not going anywhere soon, thenkyouverymuch. And it wasn’t the pharmaceutical company denying me, it was the insurance company. I wasn’t worth the cost. If I’m statistically almost dead already, it’s not cost effective for them to pay for this. You’ll recall I said it was expensive – let me show you how expensive. Radicava is administered by infusion. Each infusion lasts for about one hour and administers a 60mg dose. The cost for each infusion is as follows:

The medication itself: $1238.80
The medication to flush the IV/PICC/port line into your vein: $180
If you do in-home infusion, the nurse’s time costs $251.20 for the first 2 hrs, $86.10 each hour after if needed
If you go to an infusion clinic, the cost for nursing is $107.10 for the first 2 hours, $50 after.

Now, since it’s not easy to get anywhere and do anything with ALS, we’ll go with in-home infusions, so that is $1,670. Per dose. How many doses do you need? Well, you start treatment with 14 consecutive days of infusions. That’s $23,380. Then you take 14 days off. Then you do 10 consecutive doses over the next 14 days. Then 2 weeks off. Then 10 over 14. For the rest of your life. It’s over twice what I make a year, to use this drug. As much as I hate it, I get why insurance would consider this a dumb investment. I hate that that is even a consideration in whether or not I have access to this.

Knowing that I was going to get denied, I asked to try anyway. I filled out a form giving the infusion clinic access to my medical records, on the off chance they could use this to leverage my insurance company to pony up some dollars to help a dying girl out. Monday I got a call from Searchlight, the company coordinating the treatment, and they said that typically my insurance covered this treatment after a 5% copay. Luckily, she said, once I hit my out of pocket max, it’s all covered. Did I have any questions?

“Yes,” I said. “…Does this mean that I actually am going to be covered for this?”

“Well, we’ll be sending your information along to your doctor provider, but it looks like we’re good to go.”

I dared to let myself hope. Just for a moment. I went out with J and had celebratory sushi, but said nothing to anyone else (except my mom, who was here when I got the call) just in case it was a misunderstanding.

It wasn’t.

Wednesday I got a call from the nurse to discuss the actual cost, how much I was responsible for, and to start making appointments. She gave me the above price list, and we discussed would I like a PICC line or a port? Since this was pretty much going to be a regular thing, infusions by regular IV aren’t an option – imagine having to get your vein stabbed every day for an hour long IV drip. Folks on dialysis, infusions, or chemotherapy usually opt for either a PICC line or an implantable port. A PICC (peripherally inserted central catheter) line goes in your upper arm, and then into a central vein in your chest. An implantable port, or port-a-cath, gets implanted under the skin in your chest and also snakes into a central vein. PICC lines are technically good for a month, though if you treat it carefully, it can last much longer. A port-a-cath is considered a permanent implant. PICC lines are much simpler to install, it’s just a complicated IV insert with a chest x-ray to make sure it’s done right, but a port requires at least conscious sedation. A PICC line needs upkeep once installed; it’s basically two little ‘pigtails’ as she called it, sticking out of your skin and held in place by tape. You can’t get it wet, and have to wear some kind of sleeve to keep it from getting caught on things. A port is just a little bump under your skin, no maintenance required. PICCs are easy to remove if you change your mind. You’re kind of stuck with a port for the rest of your days.

So yesterday I had a PICC line installed.

If I tolerate the meds, we’ll install a port.

This is happening. Even if it does me no good at all, even if it actually makes things worse, we have tried. I am a data point. I did something. I did everything I could. I should start infusions next week.

I can’t wait to keep you guys posted.










A New Awkward

tragerstreit2 Comments

This morning, while being wheeled into work (because J is a freaking rockstar of awesome), we met up with a former coworker of ours. This woman is French, and has a super thick accent, and is very sweet. She hadn’t seen me for quite a while, and the walker was new to her.

“Good morneeng, Vashtee, are you okay? Deed you hurt yourself?”

“Oh! Hi! How are you?”

“I am good, but zees walkair, are you okay?”

“Oh. Uh.” I looked at J, who was no help. He was busy trying to get my wheels over the building’s threshold, something we struggle with every morning. “Not…really? I..have ALS.”

Blank look.

“Lou Gehrig’s?”

“I have not haird of zees ALS, what ees eet? Are you going to be ok?”

“It’s…” Ugh. What do I tell her? I’m gonna die, sorry we haven’t seen each other in awhile?
She misinterprets my struggle as reluctance. “Eet’s okay, you don’t ‘ave to talk about eet, eef you don’t want to.”

“Oh, no, no.” I settle for, “It’s a degenerative disease, I’m losing my ability to walk.”

Even that slice of information makes her sad. And it’s awkward. A new kind of awkward, a language barrier, subtleties of tone and subtext kind of awkward. Usually if someone doesn’t recognize the names of my disease, I can say, ‘neurodegenerative’ and they infer the ‘terminal’ part by tone and expression. And then we move on. But she doesn’t understand, and I don’t want to be so crass as to just cheerfully say “I’m dying” as I do with folks I know better, but there aren’t better and simpler words that are gentle. So I leave it there.

Delivering news of a terminal diagnosis is hard. I have complete empathy for doctors, this has to be the shittiest part of their job. But when the diagnosis is yours, and that relative/friend of the patient is a dear friend/relative of yours, not just some professional duty, it’s harder. It’s a strange and terrible combination of delivering devastating news and divulging a horrible secret. And watching the parade of emotions cross your faces, the ‘holy shit this is awful but this is HER dying so I can’t be selfish and grieve on my own behalf I have to be strong for her and not let it phase me but holy GOD, man I can’t believe she is DYING but she’s standing there looking like she’s sorry for ME..’ That part doesn’t get less awkward.

The worst time was when I told Danielle. She started crying, and when I reached over to comfort her, she brushed me off, dismissing her tears with a headshake and “It’s not about you.” I still don’t know what the hell that was supposed to mean. But I never asked.

Delivering the news hasn’t gotten easier. I’ve gotten better vocabulary, gotten a smoother delivery, but telling someone who has English as a secondary language was an all new difficulty level for me. It was an interesting experience.

A new level of awkward.










This Was Spinal Tap

tragerstreitLeave a comment

This Was Spinal Tap

So yeah! Part of my diagnosis cha-cha was getting a spinal tap – lumbar puncture if ya wanna be all techyface about it. It was primarily to eliminate the possibility that I had MS. Of all of the testing and poking and everything, this was the only procedure that I had any real nervousness about. I got some practical advice from t3h J03 who had been through one already, which helped, but I was kinda braced for it to be awful. I’d seen a lot of episodes of House, where they tell the patient to curl up on their side and brace themselves because… *dramatic sympathetic look* …it was going to hurt. I knew it wouldn’t be NEARLY as bad as House makes it look; I wasn’t afraid of the pain, but I had concerns about the possible side effects or complications and just kind of freaked out in general because OHMY GOD THEY ARE GOING TO SHOVE A NEEDLE IN! MY! SPIIIIIIINE!!! YOU HAVE A FINITE AMOUNT OF SPINAL FLUID AND IT COULD ALL LEAK OUT EVERYWHERE!! I COULD DIE!

Obviously I did not die.

It was actually a piece of cake. I’ve honestly had routine blood draws more painful. I wanted to post about it, for the curious, and also to reassure anyone who might need one. THEY ARE LEGIT NOT A BIG DEAL. Technology is amazing, and it’s not nearly as archaic as the tv shows make it to be, and it seriously did not really even hurt. Here’s how it all went down:

I was crazy early, and they also had some emergencies come through so they actually took me back 45 minutes late. They were playing The View on the little waiting room TV, which cemented my hatred of daytime television. So many screeching women talking about shit that doesn’t matter. When you have the former World’s Fattest Man on your show to talk about his amazing weight loss story and his reentry into society, and his girlfriend joins the panel, IT IS VERY RUDE TO ASK ABOUT THE MECHANICS OF THEIR SEX LIFE. Specially as he was so, so very British. I could FEEL the discomfort off of the television.  UGH HOW DO PEOPLE WATCH TELEVISION.

So I was very happy to be taken back!

I changed out of my clothes into pants and gown big enough to swim in. My tech apologized that she did not have smaller pants, just do the best I could. I could have fit in them three times over. We went into the radiology room, where I had a bit of blood drawn for something or other, and I literally did not feel it. I watched him do it and everything, and commented on his magic touch. Blood draws aren’t particularly painful or anything, but it was weird to feel nothing at all. 

The tech explained everything that was going to happen, step by step. Here is this big-ass table, upon which you will lie as still as you can, we will use live x-ray to see exactly where we are going, and if you feel any discomfort at all please tell us. The radiologist came in and did the same, and I signed the consent forms and crawled up on to the table. They had me lay flat on my stomach, and the tech was all “I’m just gonna pull these down a bit,” meaning the pants, and promptly exposed my entire ass to the room. THANKS LADY. HI HAVE THAT. They chatted amicably while they worked, about skiing vacations and everything while he washed my back down with iodine which I swear to GOD they store in the freezer. I was warned it was going to be cold but HOLY CRAP KIDS. That, I think, was the worst part of the whole ordeal, and really it was nothing. He marked the spot he wanted, and jabbed lidocaine under my skin. That pricked a little, but no big deal. He was watching himself work under the x-ray monitor to guide the needle through. I felt it push in, which was a weird jolt of pressure, and kept waiting for the pain, which never came. He pulled out a vial of maybe like, a tablespoon of fluid, and then three more vials of like a half teaspoon each. One of them would be tested for MS, and I’m not sure what other battery of tests were done. It was weird to see these vials of clear fluid and think that your brain is floating in that stuff. 

And then we were done. I think I was in that room for twenty minutes, most of which was waiting for the doctor to show up. Maybe ten minutes on the table, tops. I was wheeled on a gurney to a recovery room, where I had to lay for twenty five minutes or so to make sure my spine wasn’t going to leak out everywhere. They gave me a sammich to eat while hanging out. I kinda expected to feel…something. But I was totally fine. No headache, no nausea, no dizziness, nothing. So I got dressed and we got out of there. Danielle hung out with me that afternoon to keep an eye on me, but I think she was a little surprised at how little I needed tending to; she even made a comment as she left about feeling useless. I was perfectly fine, and able to get around okay.  The only result from the tap was eventually I got a bit of soreness across my lower back, which just felt like I was sitting too long, and the rare side effect of a spinal headache. I had actually resigned myself to getting a spinal headache, since headaches and I have such a close relationship, but most people don’t. Spinal headaches are strange; if you stand up, it hurts, but reclined in bed you feel perfectly fine.  I was able to go back to work quickly, but I had to kick my feet up on the desk and recline for most of the day. It’s not a conducive posture to actually getting much work done.

All in all, I think it felt a bit anticlimactic, if anything. I was geared up for ….something, and it was totally nothing. No big deal. At all.

So now you know.










April Fool

tragerstreit2 Comments

I’ve always, always hated April Fool’s Day.

I’ve only ever been – at best – ambivalent towards the holiday. I don’t generally like pranks, because usually what I see aren’t so much as pranks as people being complete dicks to an innocent person. It’s a really mean-spirited holiday. I believe in open communication and trust, and this holiday celebrates being awful to people. The general rule is, “if it’s not at least as funny to the victim, it’s not a prank.”

Three years ago, April fools became something else to me. It became Diagnosis Day. Sadiversary. Three years ago, I sat in a doctors office, and was told I was going to die. Horribly. I had previously joked about having this appointment on this holiday, joking on Facebook that regardless of the results of this appointment, no one was going to believe me. I now tell people that my diagnosis was the un-funniest April fools prank ever.

Three years later, I’m taking stock of everything I thought since then, and everything that has become. I knew that no matter what I thought was going to be the problem, my real troubles were likely to be things that never occurred to me. I was mostly correct. I’m a pretty smart person, and observant, so I saw a lot of my troubles coming. I’ve surprised myself with how well I’ve handled some things I thought would destroy me. The loss of my hands. The death of my 23-year-old cat. And, predictably, some things surprised me by how intensely I reacted to them. Or, as has usually been the case, how little I reacted to them. My first fall. That was kind of a, “well that sucked.” Instead of a nuclear eruption of emotion. Often times a completely excusable meltdown has instead been met with, “yeah, okay, there’s that.”

Tuesday, I had my second semi serious fall. As is mostly usual I can’t even tell you exactly what happened to make me fall. I can tell you that’s a major contributor is that I OUGHT to have been holding onto something, and I wasn’t. That would’ve helped. Instead, I went down like a ton of bricks and somehow twisted my knee. It hurt badly enough that I was nauseous for a moment, and had to lie there a moment to catch my breath. I can tell you exactly how I managed to twist my knee, but I did so. Just so. And so for the last few days, I’ve been having a taste of what it’s like to be immobile. I’m used to being able to walk around my apartment, simply leaning on the walls for support. I couldn’t put any weight on my knee at all. And living alone meant that in order to get to the bathroom, I had to swivel myself onto my Walker and push myself around the apartment with my good leg. It was really…

… Lonely.

I wasn’t expecting that. I was expecting helpless, and frustrating, certainly. But it hasn’t really been the helplessness and being bedridden lately that got under my skin so bad. I’m a very independent person, and will fight to hold my own, on my own, until I am actually dead. It wasn’t really that I wanted help? But it was just as when I’m sick. I just wanted someone else around. Had I had a roommate at the time, I would have completely ignored them. As usual. But sometimes it’s pretty awesome just knowing someone else’s around. Especially when you’re hurt or ill.

Three years ago, I was completely able to stand up out of a chair on my own. Without using my hands, without even thinking about it. And now, when I try to get up off of the toilet I can’t even remember how my legs did that. How my body was able to just… Stand up. How I was able to run up a flight of stairs. It’s not even depressing so much as bizarre to me, that I have completely forgotten how to do simple things I used to do without thought. I expected frustration, anger at my ability to bend over, balanced on one leg, to pick something up off of the floor being taken away from me. But I find myself staring at whatever it is on the floor that is vexing me, baffled at how my body used to Do the Thing. Without will, without thought. Unthinkable.

It’s been three years since I was officially diagnosed. Self-inflicted injuries notwithstanding, I’m still on my feet. This is amazing. A lot of people with ALS would be dead by now. I’m losing the use of my hands, which is why I’ve been using voice dictation to create this post, but I can still do the basics. I can use the toilet by myself. I can go get myself a drink from the fridge, as long as I’m careful carrying it back. I can still pet my cats. For now. My progression is still very, very slow. And I am extraordinarily grateful.

I still hate April Fools’ Day. I can’t really blame the holiday for my diagnosis, or even the timing, because I was given the option to have this appointment on this day. I knew in my gut what this appointment was going to be about, by virtue of having been given the option to move the original appointment closer. I could’ve waited two days. But I already hate the holiday, so why taint any other perfectly good April day with an anniversary such as this?

Regardless of how you feel about the holiday, please treat your fellow humans with respect. Make sure your prank is funny, and not just you being a dick.

Life is enough of a dick as it is.










Spoiler Alert: #everyonedies

tragerstreit2 Comments

Today’s post comes with story time!

Story one:

I’m walking with the cane into the cafe. There’s a girl who works there that I smile and say hello to practically every day. She notices the cane, today. I don’t always bring it down when I get a drink, but today I have. I’m a little wobbly, anymore.

“OH no, did you hurt yourself?”

“No,” I shrug, “I have Lou Gehrig’s. I’ve just gotten weak enough finally that I need this a lot.”

“Oh, god, I’m sorry, I’ve heard of that. Is it painful?”

“Oh no, nothing hurts, really, but it’s just a loss of strength over time. I guess that’s a good thing, nothing hurts even if you ARE dying slowly,” I half-joke.

“Well aren’t we all,” she smiles back.

“Truth,” I tell her, and we part ways.

Story Two:

We’re walking to a restaurant, my coworkers and I. We parked kind of far away, and I’m struggling a little with my cane, to keep up with the crowd.

“Keep up,” he jokes, falling behind to walk next to me.

“I’m trying,” I tell him, grinning. “Y’all bastards walk too fast.”

“Well maybe you’re not trying hard enough to keep up,” he teases.

“Yeah sorry, everything’s slow with me. Neurons burning out, walking, you name it. I’m *sorry* I am slowly dying,” I joke.

“Well, everyone’s dying,” he shrugs.

“Some of us just take the fast track,” I tell him.

The Rant

Please, please stop saying “well technically everyone is dying”.

Please.

It’s like when the cashier is ringing up your stuff and something doesn’t scan and you snort, “well I guess it’s free.” It’s a dumb joke, everyone’s made it, she’s heard it a thousand times. And it’s already old and it wasn’t funny in the first place and you’re not that clever, just pay for your shit and leave. And you know it’s a dumb thing to say, but you said it anyway, and will say it again, but everyone politely laughs even though no one thinks it’s clever.

Only, …no. Okay. It’s not really so much like that. It’s..

It’s dismissive as FUCK is what it is. Yeah, okay I get it, everyone is dying slowly. We are all biding time until our own demise. Everyone, eventually dies. MEMENTO MORI.

When you tell me, “yeah well we’re all dying, right?” I know you’re trying to soften the blow. You’re trying to comfort me in a way, to include me with the rest of the human race, telling me that death is normal and it’s okay. To make light of the situation. And I will always, always joke back.

But I don’t want to.

What I WANT to say is “fuck you”. You’re completely dismissing my death. You’re diminishing the sadness of my struggle. You’re telling me that I’m nothing special, that my disease is no big deal. Everyone dies. So what? My disease will kill me but hey, everyone eventually dies anyway so what does it matter? What do YOU matter? What are you whining about? Everyone dies, so what.

So what? Yes, everyone dies. But YOUR book has a billion potential endings. Boating accident! Heart attack! Cancer! Pneumonia! Peacefully in your sleep with your loved one by your side! Gun accident~! You could die of ANYTHING! You could die during sex! You could die from mountain climbing and being exposed to the elements! You could join an international drug cartel and be gunned down on the private air strip in Boca Raton when Louie rats you out! You NEVER should have trusted Louie! You could fall on the sidewalk and hit your head JUST SO and become brain dead until your tearful mother signs the paperwork and they pull your plug. Choose Your Own Adventure Death! If you would like to die of accidental CO2 poisoning, turn to page 56!

My Choose Your Own Adventure book has three possible endings. A long, lingering loss of ability and strength, humiliation, frustration, and fear that ends in…..

OPTION ONE! Sudden accident. I mean, anyone can get hit by a car, randomly, or some freak accident, lightning strike, store robbery gone wrong. Anything could unexpectedly kill me. We’re even on that front.

OPTION TWO! Suffocation! I choke on my own spit, unable to breathe because my muscles have all atrophied and I can’t swallow or take a breath and eventually I choke to death. Drowned in my own spit.

OPTION THREE! Suicide! I decide somewhere along the story that I’ve had JUST ABOUT ENOUGH, thank you, and take some pills if I can still swallow, or push the meds into my guts via feeding tube.

THAT’S IT. Those are my options. Your roadmap to life has a lot of lingering little trails and you never know where they’re going to take you. You might decide to become a mountain climber at 60, you might die tonight, you might waste your life away at some meaningless job until you have a heart attack at your desk. Your maps are open and wide and the ends aren’t known but the possibilities are endless. My map branches three ways, and there are many many stops along the way. Loss of walking. That cuts off a thousand roads. Loss of hand/arm movement. Well there’s a ton of other destinations crossed off my map. Unable to eat. Well that’s a lot of stuff closed off to me, what with the wheelchair and the feeding tube and hell, you need a special van to travel now, you can’t just pick up and go. So my destinations are the trauma ward, a palliative care hospital bed, or a dose of pentobarbital in a place of my choice.

We’re all dying. Some of us have our stories written, and the endings are not happy. There is no happy ending for ALS. And when you compare your unwritten book to my Cliff Notes, it’s insulting.

Your story probably does not have chapters in it about falling for absolutely no reason and getting a really horrible looking scratch out of it but not allowing yourself to show pain because the people you’re with are freaking out that you fell and you have to assure them you’re okay. It probably does not feature you cleaning out a cat box and breaking out in a sweat over that small, stupid effort. It probably does not feature a feeding tube or respirator as a given course. It likely does not have six introspective chapters, each titled some variation of HOLY SHIT I AM GOING TO DIE IN A REALLY FUCKED UP NIGHTMARE WAY AND I KNOW IT’S COMING. Your story might have a little chapter about being embarrassed in front of someone when screwing up something you were trying to say, but I doubt it has six paragraphs afterwards wondering if that was a one time fluke or is it a sign your tongue is starting to atrophy too? Did I enunciate when I was on the call with my manager earlier? Is this guy saying ‘what’ because he didn’t quite catch what I said or because I have lost the ability to speak and he literally has no idea what I just said? Your book has going to work and going shopping, but does it have a pre-chapter about managing a ride that isn’t going to be too hard for you, or not purchasing #thing because you’re not sure you can lift it up in the cupboard where you’d like it to go? Your story’s ending is unwritten. Mine is written in stone, carved by hands that no longer have the power to pick up a chisel.

Telling me “everyone dies” is the same as co-opting #blacklivesmatter into #alllivesematter. You’re technically correct AND YOU ARE COMPLETELY MISSING THE POINT. And diluting the original message with your vapid need to be included. Of COURSE everyone dies. Of COURSE all lives matter. BUT THAT IS NOT WHAT WE ARE TALKING ABOUT RIGHT NOW. You are dismissing the message and selfishly, HORRIBLY, turning the story about you. In telling you that I am dying, I am not saying no one else dies and no one else has to mourn. I am not dismissing the value of your mortality. I’m not denying your story has an end. I’m telling you mine is brief. As someone put it, by saying “save the rainforests” I am not saying “fuck all the other kinds of forests, they’re deserving of destruction”. By saying black lives matter, it’s not to say others DON’T. To say that I’m dying is not to say that you aren’t.

It’s the same, also, as when you tell a friend your woes and s/he says, “That’s okay, I lost my job today.” IT IS NOT OKAY. YOUR PAIN DOES NOT DIMINISH MINE. You have a right to your suffering, and it does not trump or cancel out anyone else’s. People will often try to one-up your sadness, and I’m guilty of doing this too, sometimes, and it’s a horrible, horrible thing to do. I don’t understand what the point of it is. I see your suffering and raise you “my keys got locked in my car”. Your pain doesn’t matter, because I have a completely unrelated circumstance that I somehow have determined is more impactful than yours and therefor I am suffering worse and I WIN at the FML game! And LOSE at Friendship and Human Interactions! And I leave with a parting gift of making your situation worse by dumping all over you when you wanted comfort from me! I’m going to put that statement again in its own line, because it’s important.

YOUR PAIN DOES NOT DIMINISH MINE.

We are all dying. Some of us just know the way. And if you don’t, then I’m happy for you. Seriously. I rejoice with you in not knowing your end. It’s an amazing, free world of possibilities and I’m delighted you get to dance in that sunshine. I will read my own story, and dance as long as I can, while the rain comes, before I’m washed away. Both of our stories are fantastic pieces of literature, but because I got a sneak peak into the last chapter, it doesn’t make my book any less worth reading. Your book’s unknown end chapter doesn’t make your book better than mine, or different. And when I tell you the plot, you don’t have to tell me that EVERYONE’S story finishes. Because of course it does. I was just trying to tell you about mine for a second.

And I joke about it, because it’s a sad thing and I try to keep things light; but I want you to know that it’s crushing when you dismiss me like that. Everyone dies. Yes. This is an unfortunate fact. A fact that does not change that I have a terrible disease and I’d like to be able to talk about it without it being diminished to a non-problem by the words “everyone dies”. You don’t need to one-up this. You don’t WANT to one-up this. It’s okay. Just say ‘sorry’ or shrug and agree, or laugh with me about it, or tell me to man the fuck up, tell me anything but that I am insignificant because of course everyone dies. And none of this matters. Because I fucking matter. If I didn’t, you wouldn’t be wasting your breath to piss me off with those words.

Everyone dies.

Some of us have a story they’d like to tell, before that happens. Not because they think it’s the best book. Not because they don’t think you have one, too. But because they think it’s worth reading. So, thank you for reading mine, so far. I hope it’s been worth it.

Everyone dies, but I guess not everyone gets to blog about it, yeah?










I guess it does get easier.

tragerstreitLeave a comment

Best, easiest breaking of the news so far; ran in to a guy in the cafe who used to be our network guru. He noted the cane I was leaning on.

“What happened, you hurt yourself?”

“Naw, man, Lou Gehrig’s.”

“Oh. …That sucks, I’m sorry.”

“Thanks. I’m alright. How’s the new job?”

“It’s going great! I’m really glad to not be in charge of things anymore.”

And then we dished about network infrastructures and technology and selling houses for ten minutes. And that was all. He asked as we parted if there was anything he could do, I told him I was okay, thanks, but I’d keep him posted. Sometimes the best reaction is just, “Well…shit. Sorry.” and then move on.










Genetic Go Ahead

tragerstreitLeave a comment

As you may or may not remember, I was formerly denied genetic testing that would show if I had the genetic markers that would show if I’m a good candidate for trials. Since I’m on a different insurance plan, I asked if we could try and get approval again. Cigna said no, maybe Providence would say yes, since their own doctor fought so hard for it last year.

They said yes!

I’m not sure how much my portion of it will cost. I don’t really care, to be honest. I’ll afford it. There is a lot of exciting research being done right now, some promising results, and I’d love to be a data point among them.

I’m looking forward to having more information. To BEING information. I hope the tests allow me to participate. I hope I can be useful.

I hope this diagnosis is good for SOMETHING.










He, She, Me.

tragerstreit4 Comments

He:

A few weeks ago, a few very short weeks, a friend posted something in her facebook along the lines of “our routine doctor appointment turned into a little bit more. He’s being admitted right now, but please don’t worry!”

…and I worried.

She’s like me. Bubbly, happy, all about best possible outcomes, optimism, and smiles. She’s a joy to be around. He’s a sardonic, sarcastic, clever man who used to be my boss. You know he’s awesome if he used to be the boss of me and we STILL talk. He’s snarky and hilarious. They’re both a pair of my favorite people. Still can’t believe they hooked up, much less got married, but they’re fucking perfect for each other and I’m really glad they did. I love them to pieces.

So when she, bubbly, optimistic She, didn’t SAY what had gone awry, I knew it wasn’t good. And then I was invited to a support/information group created in facebook, to keep in touch with what was happening and how we could all help. And then, scary words eventually saw the light of day. Cancer. Stage 4. Scant months to live. Maybe more if chemo works.

And just like that, their lives were over as they knew it. And just like that, the floor dropped away from all of us who knew and loved them.

I can’t even pretend to say I know what it’s like to be told you have a short and definite lifespan. I know how it was for me, how it continues to be, but I can’t even fathom what he’s going through. His time is so much shorter than mine, his notice so much more sudden. He has a wife. And while they’re publicly taking it with grace, no one knows what’s going on inside. Some aspects I can guess at; the panic of Time suddenly a companion, yelling at you about all the things you have to do before you go. The complete bafflement of, how did this happen. Is there something I could have done? But then there’s also the chemo – unlike my timeline, there’s a chance for an extended cut, but only if you can withstand it. And now they have to decide quality of life vs. quantity. And I know that mental argument very well.

There’s absolutely nothing I can do but stand by and love them, and listen, and hold space. And when they make decisions, honor them. Be there as much as they will allow me to be. And then let him go.

It’s the only thing within my power.

She

I wrote about her awhile ago. She was suffering from bulbar onset ALS, and she gave me the chance to figure out and to talk about how I feel about assisted suicide. And she gave me the courage to tell all of you, and start that difficult conversation. It’s a really hard thing, to tell everyone that you are probably going to take your own life and they’re going to have to forgive and be okay with it. She did it with perfect grace.

She had been fighting the Boss Fight of ALS for awhile. Her decline was fast. I only knew her through facebook posts, and it seemed like daily there was another struggle, another development. But she faced it with so much fucking GRACE, and smiles, and gratitude. Her posts weren’t about how she’d never live to see her son grow up, they were about the daily joy she found in his company and the treasure trove of memories she was building for him. Her posts weren’t about her medical suffering, they were about the gratitude for the people who helped her through it all. Look for the rainbows, she says constantly.

April 4th, she had fought enough. She left a goodbye, and a video for her son, and the last words, “Enjoy. I have.”

And then she let go. And so I, too, let her go.

Me:

I’m losing strength in my hands.

I’ve been noticing maybe a month or two now, but I’ve been in complete and total denial. The mailbox lock has ALWAYS been hard, it’s just a bit more difficult to turn the key; must have frozen or something. The lid to the cup is way more difficult to pry off because it’s new. Cutting a piece of steak cramps up my hands, but hey, it’s just cramps. I had AGES before my foot strength was lost after the cramps started, right? My hands are shaking while holding my laptop because I’m just tired. The word of the day and things that I write up on my whiteboard every day just SEEM a little shakier. But I’m sure it’s nothing. Right?

Friday, April 4th, I fell. For no reason. It was the first time that happened; I wasn’t tripping on anything or trying to maneuver, I just…fell. And wrenched my ankle. And felt very sorry for myself and frustrated. And so I told Dr. Goslin this, on Thursday during my appointment. And she confirmed I’m losing strength in my hips.

…And I said I think I might be losing strength in my hands. She did the usual tests. And proved that I am.

I was absolutely right in that this? This is a trigger. This is panic and terror and the beginning of the end. And this makes everything so much worse. My timelines have shifted, and things I thought I had some time to do, I suddenly don’t. I have to write the letters while my handwriting is still stable. I have to do all the things I can’t, soon. And I’m freaking the fuck out. Because I don’t know what else to do but scream.

She asked if I’d like to borrow a motorized wheelchair to see how it works out. And internally I flipped the fuck out because I am NOT ready for that. No way no how. But outwardly I politely declined and said I’d like to wait awhile before going down that road. She agreed that I have a lot more time of mobility left, so there’s no rush. But it’s coming. Danielle suggested one of those old-people jar opening assist things. And I panicked a little but kept it in. I said maybe a walker, but not a wheelchair. Not yet. But my hands are going to have to be accommodated for.

After the appointment we went to the store to get some meds and some air fresheners for the empty rooms in my house that I’m clearing out for sale. And I couldn’t get the fucking tops of them off. I had to use my teeth. I still have dexterity, but my strength is going. And so, too, are all of the things I thought I could do to keep the loss of mobility tolerable. For now I can still type. I can still play video games. But I thought I had so much more time before I had to think about the end of those things. To a time when I can’t use chopsticks, to when I can’t pull myself out of bed, to when I can’t dress myself.

And it scares the motherfucking SHIT out of me.

I’ll get accustomed to the changes as they come. I’ll persevere. But I feel like this is kind of when I really start to die. No mobility? Whatever, that’s okay. Seriously. It sucks, but a wheelchair isn’t that bad. This is a hardship, but not the end. When I am no longer able to draw stupid pictures, no longer able to frost a cupcake, no longer able to chat, no longer able to launch Skyrim…that is the death of me. When I am no longer able to even fucking pet my cats. That begins the days of the useless shell that I become. I wonder if I’ll want to go get the prescription the day I drop something for no reason. I won’t use it yet, but I wonder if that’s going to be the preflight check. When I will start thinking seriously about the endgame.

And I don’t know if I’ll have the strength to let go, when all I feel like doing is trying to hold on.

And I’m really, really scared.










Anniversary

tragerstreitLeave a comment

There’s a book called “Miss Peregrine’s Home for Peculiar Children”, which I love, and in the epilogue, it brilliantly describes how anything that changes you forever splits your life into two halves: Before and After.

Before, like anyone else, I had a lot of plans. I just bought a house. I had all the paint, and all the decorating ideas, and SUCH a garden planned in my head. My backyard is luxurious and I had many garden barbecue parties planned already. I had a spare room just for fostering kittens. My kitchen was a thing of beauty, I was planning amazing culinary ventures. This was going to be my forever home.

Before, my health was pretty good. I still had chronic headaches, but they didn’t really interfere with life much. I had lost a bunch of weight and was fitting into 32 inch jeans again – I felt healthy and cute, and was getting confident about my body. I wore size small shirts, and bought new clothes. I had energy, I was doing things and going out.

Before, work was reaching a comfortable zone. I had confidence in my ability to rise to whatever I was asked to do, and I saw a long career ahead. I was going to school to become an engineer and get promoted.

Before, I was comfortable in being single, I was self-reliant and independent. I could do anything by myself.

Before, I never really thought of myself as particularly important or special. I had people in my life I adored, but never felt worthy of their adoration in return.

Before, I never thought about death much. I knew academically that I agreed with assisted dying, I knew that getting paperwork done way in advance was important. I knew I should have an advance directive. I knew it happened to everyone, I knew on a high level what happens and that there’s a ton of complication and high emotion when it occurs.

A year ago today, I was in the middle of the Medical Folderol and had recently discovered I couldn’t stand on my toes anymore. A year ago today, I sat in Dr. Goslin’s office and stared at her hands while she told me that I have ALS.

After, I use leg braces, knee braces, and a cane to help me walk. When I walk down the hallways at work, I usually don’t bring the cane, but walk with one hand brushing against the wall the whole time. My social worker called it “wall surfing”. Walking a block exhausts me. I carried five empty boxes up the stairs last week, setting them on the steps, walk up a couple of steps, pick up the boxes and put them a few steps higher, repeat. I was sweating and out of breath by the time I was done. Walking the mile to the bus stop is out of the question. I carpool with an awesome coworker in his big red truck, and I know there’s going to be a time soon that I can no longer physically get in his truck. I can’t manage the one step up into my house, I have to brace my hands on the doorpost and pull myself in and up.

After, every crowded room is a minefield. Who is going to knock me over? I carefully watch my entire perimeter for unexpected people, or someone in front of me stopping suddenly. Every social interaction is a potential disaster, far and above my usual social awkwardness. There’s no more casually walking around, I have to be keenly aware of movement around me so that I don’t get tripped up or knocked down.

After, everything is a matter of energy budgeting. I wake up already exhausted, and everything is so much harder. My muscles have to work overtime to compensate for the ones that suck. There’s no more “just a quick trip down to the store room” at work. I have to plan that effort. Every little thing sends me in to a sweat. It’s super sexy. There’s no more getting a wild hair and deep cleaning the bathroom. Some weeks the bathroom doesn’t get cleaned at all.

After, my weight ballooned back up. Stress eating. Bleh. But the medical professionals encourage you to gain weight and keep it, with ALS. Heavier patients tend to have better prognoses. And you need that fat, for when you’re not able to eat anymore, like a whale living off its blubber. “Don’t go crazy, you don’t want to need a bariatric chair or anything, but..be nice to yourself and eat what you want.” Cause…fuck it, I’m dying.

After, I’m working hard to sell my house that I love and fought for because it’s becoming a physical impossibility to live there.

After, I am intimately aware of the legality and the complications of death. I’ve met lawyers and social workers and it’s more complicated the further you go. There’s nothing simple about the bureaucracy of death.

After, I know damn well how I feel about assisted dying. And I intend to exercise that right, if it comes to that, and it infuriates me that it’s not an option for Alzheimer’s patients, too. And an option everywhere. Brits should not have to take a permanent vacation to Switzerland to die in a strange hotel-like room. For a lot of money.

After, I am so, so, so blown away – daily! – by how much I seem to matter to people. By the sheer quantity of people who have stepped up to do something, even something small, to make my life a little brighter, simply because it was in their power to do so. And they love me. I thought I was insignificant, someone nice to be around, but certainly not someone who mattered much, and I’ve been told and shown how wrong I was. Constantly. In surprising ways.

After, I know how much I have impacted lives around me. I know how their lives impact mine. I know how important a seemingly insignificant gesture can become, years later. How memories define you, and can change your life without you realizing it. How important it is to reach out to people, all the time, because you never know who will show back up and be a key player when drama unfolds.

After, I know my strength. I know my calm and my pragmatism were not just theoreticals in my head, they are actual and they are real, and they will help me get through this. I know I have the grace and the quiet power that can see me through everything to come, because they have seen me through this far. I know my humor and my compassion will go far and help me survive for as long as I can.

After, I know that I’m seriously a morbid bitch. My dark sense of humor prevailed, and I’m finding things funny that would have appalled me had they been about anyone else. I am in love with a web series called Ask a Mortician, fascinated by the machinations of how we deal with death. I seriously believe we have done ourselves a terrible injury by trying so hard in the last hundred years to pretend that death doesn’t exist, it’s something that happens to other people. Because sometimes, it happens to you. And we, as a society, have forgotten how to deal with that.

After, I am intimate with the kindness of strangers. It never ceases to take my breath away, and it is so life-affirming when a total stranger gives me a kind word, encouragement. When total strangers sent me money to help. When a woman I’ve never seen before or will ever see again looks me sincerely in the eyes and says words of love and strength. And means them. It’s one thing to be told, “Good luck” or “have a nice day”. It’s another to feel someone reach out with their soul and tell you that they wish you all the best, and to keep up my optimism because it will see me through.

After, a year later, I reread my blog and see myself shift in little ways, and discover opinions I never realized I had. I see myself think about hard things, make difficult decisions, and become stronger than I ever thought I’d be. And I know that I’ll be okay.

Before, I didn’t know if I would ever have had strength and support to see me through After. After, I know love and support and strength and grace I would never have discovered Before.

After, I know that by the amazing and profound love of the people in my orbit, I’m going to be fucking FANTASTIC. And I can’t wait to see what the next year shows me.